Paula C. Durbin-Westby Autistic Advocacy Blog

Loud Hands Project- Autistic people, speaking

2012-01-31T11:16:00.000-08:00

The Loud Hands Project is a transmedia publishing and creative effort by the Autistic Self Advocacy Network, spearheaded by Julia Bascom.

Currently, the project is raising money towards the creation of our first and foundational anthology (Loud Hands: Autistic People, Speaking) and accompanying website. In addition, other projects will be developed with more funding. Since LHP has already met its initial goal of $10,000, the anthology is a go!

We need this anthology as a corrective to all the quiet hands messages we get throughout our lifetimes.

The Loud Hands Project video is here:

http://www.indiegogo.com/The-Loud-Hands-Project

Check out the tumblr blog here: http://theloudhandsproject.tumblr.com/

I am making a video about VERY LOUD hands, about “quiet hands,” about stimming, and the need for the Loud Hands Project to change the “business as usual” approach when people write about us, without us.

And here it is, finally:

http://youtu.be/nfS1HEh7jRw

Currently:

The Loud Hands Project made over $10,000 in just nineteen days. It’s now at $11,390. The overwhelming and fast (!) response indicates a clear need and strong desire for the projects envisioned by LHP. Additional funding will go to these projects:

Benchmark 1: $15,000 "About us, without us"

"About us, without us" is a video about the Autistic community and our place in the conversation around eugenics and the prevention of autism.
Benchmark 2: $20,000 "Welcome to the Autistic community"

-With these funds, we can rush website development and have the Loud Hands project website complete, fully accessible, and ready to launch on April 2, 2012--Autism Acceptance Day (original Autism Acceptance Day is April 1, and now has been extended to April 1-2.)

-Use the website to commence the development of materials tailored to all ages and abilities explaining autism and welcoming the autistic person to the community.

-Initially, this will take the form of a letter drive, blog carnival, and pamphlet-design competition, with ongoing further refinement and eventual publication of materials.

Benchmark 3: $25,000: Connecting to Community Together

To begin, we will produce a DVD incorporating video and written content from across the history of the Autistic community, establishing our historical context. Then, to explore the state of the movement today, we will use the funds raised to establish a Conference Scholarship fund for Autistic self-advocates to use to attend Autistic and disability rights related conferences and events connecting to the larger theme of disability culture. Scholarship recipients will participate in a second video documenting Autistic community and culture.

In Defense of the Paper I Did NOT Copy from the Encyclopedia 39 Years Ago

2012-01-24T22:27:00.000-08:00

This one is just for fun.

“Required length for paper was 20 pages! You must have copied word for word from these books! Your paragraphs were much too long. Ex. P 4- has only one paragraph. Your print is difficult to read after over 100 pages. A- “

And so, yet again, I was assumed to have been copying my material word for word.

I’m looking at a paper I wrote on dogs when I was in 8th grade. I was trying to write the definitive paper on dogs, with every single thing known about dogs. I also tried this in the 3rd grade and recall writing 76 pages before tiring. When I got up to “show and tell” my paper before my 3rd grade peers, my teacher cut me off (of course! She had to!) but she also shamed me in front of my classmates by saying I had plagiarized the encyclopedia.

I feel that I need to defend both my 8th grade and my 3rd grade paper! Partly this is because, when I read those comments, even 39 years later (more in the case of 3rd grade), it still hurts! Ouch! How could she say that?! I found myself feeling a bit upset all over again. My teacher, to be fair, could not have possibly known that 1) I was not quite copying 2) I was not trying to cheat 3) I had read that book, or section of it, so many times, it was almost like they were my words, and 4) I was not old enough or educated enough yet to really put things completely in my own words, especially things that were way beyond my chronological grade level.

The 8th grade paper was not quite twice as long as the 3rd grade one, coming in at an impressive (to me) 132 pages. Fast forward a decade or so: The college professor who said he’d accept my 17-page (typed, probably single-spaced) paper instead of the 5-pager assigned only if every single word mattered (it did) had no idea what he’d have been in for if he had been my 8th grade teacher instead!

Back when I went to 3rd, 8th, and my first 4 years of undergrad school, one had to write everything by hand. Even when I went to college the first time, 1979-1984, the standard procedure was to turn in a handwritten paper after making a copy of it on some sort of copy machine, I forget what.

In reviewing my copious and meticulous 8th-grade writing (one teacher said “You don’t write, you draw!" like that was some sort of problem!), I see that although I did not copy word-for-word, I paraphrased in a way that both indicates that I wanted to put in everything about dogs one could put in, which meant sticking rather closely to the extant material so as not to leave any fact unrecorded, and also that I did try to put it into my own words as much as possible. At times this meant really confusing pronouns within a (too long) paragraph. The source material would not have mixed “he,” “it,” and “they” interchangeably, which shows that I was attempting to put things into my own words.

For example, I wrote things like: “The Japanese Spaniel looks somewhat like the English Spaniels, only its nose doesn’t turn up as much…They probably didn’t originate in Japan, but in China. He is very aloof with strangers and often snarls when approached.” (Hey, kind of like me at times! [I meant that metaphorically; I don’t actually snarl at people. Really!])

In some places, the words are just WAY too familiar, which means they are probably either copied verbatim or written mostly from memory from a book that I read over and over and over and over and….

What I was not trying to do was cheat. What I was trying to do was show the breadth and depth of my knowledge, and ensure that people would want to read my paper and not need to resort to things like other books or the encyclopedia! I also wanted to show off my fancy, curlicued handwriting.

I was also learning a lot- vocabulary, sentence structure, and more and more dog facts!

Did I mention that my fascination with dogs dated back at least to when I was 18 months old? My mother says that when I was that age, when I would see a dog, I’d bark. A lot. I was fairly convinced as a youngster that I could somehow “crack the code” and be able to talk with dogs directly, and even made up a “”dog language,” which I tried to teach to my dog, as well as trying to bark realistically, so that I could learn his language, too.

I have the dog language written down still. The dog language is recorded in one of the twelve “Rover” volumes that I wrote in 1st and 2nd grade. I must have been hyperlexically in love with the idea of encyclopedias in general, because from the first book, I gave them volume numbers: “Rover Vol. 1” and also wrote things like “Printed in 1966.” Vol. 11 is dated “2nd grade” but I’m not sure if Vol. 12 was much later. In almost every one of the volumes, which are all about 5-10 pages long, with writing and drawings of dogs and girls, my printing style changes completely so that only a handwriting expert could tell that they were written by the same child- maybe. I need to scan these all in and put them online somewhere safe, because the paper is so old and yellowed and falling apart. Then my dear reader will see what I mean about the handwriting.

I got into this tonight because I have started reading the 12 “Rover” volumes to my son. At one point he turned to me incredulously and said “When did you have TIME to write all this?” I said “After school. I went to a full day of school and then came home and wrote. It did not take all that long, we didn’t have tons of homework, and I couldn’t NOT write it.” (My secret agenda is to see if I can inspire him to do a lot more writing than he is doing currently, even if he does not produce twelve 5-10 page “volumes” in the next year.)

I hope that any teachers that read this will think twice before accusing a child, especially a younger child, of “just copying” or plagiarizing. While, in essence, that is what the child might be doing, a teacher might also try to ascertain the reasons for the child’s prolific output, and I don’t mean “Little Professor Syndrome.” I mean things like: “Why are you interested in dogs?” “Why is it important to you to write that much about them?” “How could you say this in a bit different language?” (For that one, do recall that a child like me did know the meanings of those words and did not want to use “easy words” so that I could use the words I thought were really interesting.)

I think that’s all.

Oh yeah. One final thing I really must say: “I did NOT copy the encyclopedia word for word! I didn’t!”

DSM5 Changes to Autism/Asperger's

2012-01-23T13:48:00.000-08:00

It’s really anybody’s guess as to how the changes to the autism section of the DSM5 will play out.

While some people have been concerned about Asperger’s and autism being folded into one autism category, new concerns have arisen about eliminating Asperger’s altogether by means of narrow, restrictive criteria that will cut out part of the autism spectrum.

My view is that changes have been needed. I am in favor of using one term- autism- rather than persisting in trying to tweak an Asperger’s diagnosis to me “not quite autism,” with all the attendant consequences and stereotypes that affect the political, social, and access to services and supports arenas.

Worse would be a change that throws people with what is currently called “Asperger’s” into a supports and services void, with the suggestion that “they are just eccentric and could act normal if they wanted to.” Autistics do not need that kind of change and neither do our family members or society at large.

Debate has raged in the media, online groups, Facebook, and private conversations. Some people are, rightly, concerned that they or their loved ones could be “diagnosed off the spectrum.” Others think it’s all a bunch of hype.

The reason I say it’s anybody’s guess as to what will happen is that diagnosis, barring some sort of biological/genetic marker/brain scan, or the like, remains subjective. If you go to see Fred Volkmar, unless you have fairly pronounced, observable characteristics, you won’t get a diagnosis. Other people who have the authority (and hopefully the knowledge) to “pronounce you diagnosed” will be more lenient and interpret the guidelines broadly. Still in existence are all the tools such as the ADOS, parental and self-reports, and other ways of determining whether or not one is on the autism spectrum. One important determinant of autism that has not been taken seriously or mentioned in the current media debate is self-diagnosis, which I strongly support as a useful tool that can lead to self-knowledge, to an “official” diagnosis, to a sense of one’s place in the world.

The changes can be viewed here:
http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=94

Debate pro and con, media articles, and so forth- a smattering from thAutcast’s page, as I am too busy being an Autistic mom to go look for everything:
http://www.thautcast.com/drupal5/content/dsm-5-pandemonium-updates-and-worthwhile-reading

Autism Acceptance Day 2012

2012-01-14T02:50:00.000-08:00

http://autismacceptanceday.blogspot.com/2012/01/autism-acceptance-day-2012.html>
It's almost time for the second annual Autism Acceptance Day. I have not written a nice, long, blog post about Autism Acceptance Day, mostly because I am tired. Landon Bryce says I write with "deadly brevity and accuracy:" http://thautcast.com/drupal5/content/50-inspiring-autistic-people-2011-parents. I love that, but it's because I HAVE to write with deadly brevity, since I don't always have time for longer musings, and, if I am going to be brief, it had better be deadly accurate!

Speaking of being tired, this is a beautifully-written account, by Lydia Brown, of another sort of tiredness: http://www.shiftjournal.com/2012/01/13/tired/

Part of what motivates me to continue promoting Autism Acceptance Day is what Julia Bascom calls The Obsessive Joy of Autism: http://www.shiftjournal.com/2011/11/30/the-obsessive-joy-of-autism/ Autism really is not all about “devastating disorder” language and alarming statistics. People who write about autism in that way miss the subtleties, and also miss the fact that it is a person they are talking/writing about. Not as in “person-first language,” which I don’t use (for details see http://autistichoya.blogspot.com/2011/08/significance-of-semantics-person-first.html )

I’ll add to this when I get a chance, but it will be over at the Autism Acceptance Day blog site: http://autismacceptanceday.blogspot.com/.

Obviously, I am using my skills at brevity to compile a cool list of great writings that fall under the category of Autism Acceptance. I will be adding more ASAP. Feel free to send me links you’d like to see here. If you see your blog or site linked here and do NOT want it listed, please contact me at pdurbinwestby @ gmail . com

Autistics Who Dare to Write about the Entire Autism Spectrum

2012-01-04T05:08:00.000-08:00

Given the insistence in some quarters that "high functioning" (e.g., person who takes 6 hours to fill out HIPAA release forms) Autistics do not have anything of value to say to parents about their Autistic children, part of me is going "Why bother?!" about the current thing I am writing, which is partly about Autistic kids, and, no, I am not sticking to “my side of the spectrum.” But I realize that this needs to be written, by me and by other people on the autism spectrum. When I finish it–read it or not. It will be there for you if you want it.

It is amazing to me that anyone would not want to read something that might provide insight on Autistic children because it is being written by the “wrong sort” of Autistic. Non-autistics who write, research, lecture, etc. about autism rarely get called out for straying outside their area of personal expertise, which would, if the same logic was used on them, eliminate most research on autism, since it's not being written by someone who has personal experience with it.

(More to follow, after I get some parenting stuff done...)

Another Article on the "Parents vs. Autistics"

2012-01-02T17:05:00.000-08:00

http://susansenator.com/blog/2012/01/the-parents-vs-the-autistics/

I notice that the "self-advocate/parent divide" tends to show up when people (mostly non-disabled parents) want "self-advocates" (disability rights activists who have disabilities) to shut up about whatever it is that is getting in the (non-disabled) parents' way. Because Autistic disability rights activists spend a LOT of time and effort working for similar and often the SAME goals as non-disabled parents (and disabled, including Autistic parents, like myself), I can't really buy the whole "divide" idea, nor can I buy the idea that "high-functioning" Autistics have no clue about what "real autism" is like. We can probably FEEL something closer to whatever it is you think we don't understand about autism, than you as a non-disabled parent can, although you do OF COURSE know your own child better than we do.

The problem is that (some) parent advocates tend to not recognize, and maybe don’t know about, the activism done by Autistic and disabled activists that really will benefit their situation and their children/family members because they are so focused on our assertion that neurodiversity (including but not limited to autism) is a natural part of the human experience. Our focus on the social aspects of disability seem counterproductive to some people, who want “the autism” to go away, since, let’s face it, the social model is only going to be effective if people and institutions who cause social difficulties change, and that really is not likely to happen fast enough to benefit people with significant disabilities. Then there is the fear that if we are legitimized, it will take the focus, and precious resources, away from their own families. I think this is not likely to come to pass- I can’t get services at all, for example, due to not appearing “autistic enough”. I do have some services, which I have to pay for out of pocket, and which I am not sure I can continue from month to month, given the limits on my financial resources.

When our efforts to work for ALL people with disabilities is dismissed, or not recognized, parents are left thinking that we just make noises about “difference being good” and that we do not understand difficulties they face. People seem to think that, or give the impression of thinking that, life on the “high end” of the spectrum is a piece of cake, at least comparatively. A random smattering of blogs written by Autistic (and therefore assumed to be “high functioning” people will give the lie to the idea that are lives are just different, not difficult, and certainly not disabled.

People in general tend to think that no one can know what they are going through, and this is true to some extent of everyone. When Autistics’ purported “lack of empathy” is flung in our faces as a reason we “couldn’t possibly understand,” remember: Some of us are parents (who are also routinely delegitimized and dismissed), some of us are parents of children who do have significant disabilities, and, since we actually do have empathy, we are the ideal allies, not the “enemy.”

http://thinkingautismguide.blogspot.com/2011/09/self-advocateparent-dialogues-day-ten.html

Autistic Parents on ThAutcast's List of 50 Inspiring Autistic People of 2011

2011-12-31T14:38:00.000-08:00

http://thautcast.com/drupal5/content/50-inspiring-autistic-people-2011-parents

Links to writings and video by Tina Jones, Melody Latimer, Paula C. Durbin-Westby, Gavin Bollard. I admire many Autistic parents; glad we made it onto Landon Bryce's short list, and hope to hear from many more over the course of 2012.

Autism, Squeaky Wheels, and "Literalism"

2011-12-24T06:21:00.000-08:00

I am not buying into the notion that if I point out an injustice, a misconception, discrimination, etc., that it's because I have some sort of "limited" "black-and-white" or "literal" thinking. I am hardly limited in my thought processes. I do think literally when I first hear something (usually things I *hear*, not *read,* as it goes by quicker) but I, and many other people on the autism spectrum, are as capable as anyone else of critical thinking. And, many people who are not on the spectrum are not all that capable of critical thinking either. And, I won't be dismissed or silenced by someone saying that I'm not capable of reasoned thought because I have a disability. Nice try.

Happy Hand-Flapping and Autism

2011-12-15T05:42:00.001-08:00

About that hand flapping thing. I have been working to get the percentages right, but they might be a bit off. One thing is for certain: If I feel comfortable in a situation, I will be flapping my hands, either a little bit or a lot, for the reasons I will list below. If I am not VERY comfortable in a situation, then I won’t flap my hands, with one exception. So, the reasons I flap my hands are: 1. Excited about something good: 55% 2. Happy and excited: 15% 3. Happy (without being excited?): 5%. 4. Overloaded sensory: 20% 5. Tired: 3% 6. Spiders: 2%. If you never see me flap my hands, I am probably not comfortable either around you or in the place where I usually see you. If sometimes you see me flap my hands and sometimes not, then it’s whatever I am feeling that particular day- “safe to flap” or “not safe to flap.”. The only exception is: Spiders. I don’t count directing the choir because that’s a different kind of hand flapping.

P.S. If I don't flap around you, or not that much, you don't have to take it personally! It can take me YEARS (literally) to feel comfortable enough around someone to just go ahead and do my own body movements. The exception would be if I am around people who are Autistic who also have atypical body movements.

Mother, Afraid of Costs of Autism, Kills Child

2011-12-06T19:54:00.000-08:00

I am writing here about one aspect of this horrible killing of a six-month-old baby, that of the mother's fears about the costs of having an Autistic child:

http://www.huffingtonpost.com/2011/12/06/stephanie-rochester-trial_n_1131305.html

Whether or not the parent was not legally sane at the time of the killing is not what interests me. The point I am addressing is that she was coherent enough at one point to express her fear that the child would cost her too much, both emotionally and financially.

"Rochester told detectives that she thought having an autistic child would emotionally and financially “ruin” her life."

Let's take a look at some of the things she might have read before she made a decision to kill a six month old baby. While there may have been other reasons for this infanticide, including her state of mental health, the following examples could greatly add to her worries.

First, let's look at common "information" about autism that includes comparisons with deadly diseases (which autism is not), extremely inflated financial "information" that is not even close to the realm of reality (debunked by Joseph at Natural Variation, see below), and generally negative and alarmist views of autism. Autistic disability rights activists and our supporters have been decrying the use of these sorts of "devastating disorder" statistics and this sort of information for years.

I am not implying that any of the organizations or agencies I will list are in any way responsible for this particular crime, of course. I do suggest that these groups, which have the power to influence how people think about autism and other disabilities, take your role seriously and think about the message you are putting out and possible unintended consequences.

Autism Speaks has this to say (in fact, if I recall correctly, A$ is the organization that came up with this "fact"):

"More children will be diagnosed with autism this year than with childhood cancer, juvenile diabetes or pediatric AIDS combined."

http://www.autismspeaks.org/what-autism

The Arc's first page on "I want to learn about Autism & Autism Spectrum Disorder" states, in its second paragraph, that it is estimated that one in 110 children is diagnosed with autism,
"...making autism more common than childhood cancer, juvenile diabetes and pediatric AIDS combined."

http://www.thearc.org/page.aspx?pid=2536

The fact that these three childhood diseases, which are dangerous and scary, but relatively rare have to be lumped together and autism is still "more common" than them is an exercise in fearmongering.

The Autism Society "estimates that the lifetime cost of caring for a child with autism ranges from $3.5 million to $5 million.."

http://www.autism-society.org/about-autism/

The Autism Society got its figures from this Harvard School of Public Health report. The Harvard press release has the title of "Autism Has High Costs to U.S. Society":

http://www.hsph.harvard.edu/news/press-releases/2006-releases/press04252006.html

Armed with all this "knowledge," one could easily be desperately afraid, whether or not one has any mental health condition. If mentally unhealthy, as this article suggests, these statistics running around in her head could have put her over the edge into doing something unthinkable.

http://www.dailymail.co.uk/news/article-2070821/Mother-smothered-baby-feared-autistic-insane-postpartum-depression.html

Most parents won't kill their Autistic kids (thanks, Mom!). These kinds of statistics, however, many of them not much more than speculative, do fuel people's fears about autism.

For a good article debunking the "costs" of autism and the "Autism has High Costs to U.S. Society" idea:

http://autismnaturalvariation.blogspot.com/2006/11/debunking-costs-of-autism.html

It would be questionable on my part to assert that the abovementioned organizations have any direct responsibility for the actions of a single individual, however the almost ubiquitous repetition of fear- and anxiety-inducing statistics on the websites and other communications of large organizations amount to a kind of pernicious influence on both parents of Autistic children and the general public, and sometimes, unfortunately, on Autistics ourselves.

NOTE: I have made two changes since I first wrote this article two days ago. First, I removed one sentence. Some readers of my first version of this article pointed out that my sentence "Most parents won't kill their Autistic kids" does not take into consideration that prenatal testing could be used for selective abortion. I have decided that the prenatal testing issue, which is of importance, and the topic of this particular crime, should not be conflated so have removed that reference in the body of this post.

The second change I have made is to replace the word "murder," which has certain legal meanings, with the words "killing," and "homicide." I share the sense of moral outrage that many people have expressed about the smothering of a baby, and have made the change with some reservation, but it is not always correct to refer to a killing by a person who is legally insane as murder, so I will refrain from doing so in this article.

"Autism Traits May Have Aided Lost Boy"- Not Even Close

2011-11-19T13:41:00.001-08:00

This is the letter I sent to the Richmond Times-Disptach on November 4. I think enough time has passed that they probably won't print it, so here it is. The first part is my letter to the editor. The second part is quotes from the article, with quotes in italics from other sources, which emphasize my point. Additionally, nothing in this post is to be construed as me being in favor things like wandering codes, guardianship, and other measures that limit self-determination. Safety measures are one thing; limiting civil and legal rights is another.

November 4, 2011

Dear Richmond Times-Dispatch,

I am writing in response to the article, “Autism traits might have aided lost boy.” I am very glad that Robert was found. I went out on a search team early on Friday morning. The news that he had been found broke just as my search team was returning, and the relief and happiness of the searchers is something I will never forget.

I joined the team because I am autistic and was hoping that I’d be able to think of something, anything, that would aid in finding the lost child. As a matter of fact, I was nowhere near the place he was found, and I do not have any “autistic superpowers,” although my hearing was once tested as 10% above normal. I would like to interject some reality into myths and speculations about autism because those myths and speculations may prove to be detrimental to someone else.

The three traits that were singled out in the Times Dispatch article are: lack of fear, not being able to feel hunger, and not being able to feel cold. These are not traits associated with being able to survive in the wilderness. It was estimated that a child the size and weight of Robert Wood Jr. could survive from 7-10 days maximum. He was found on the 6th day, lying in the fetal position in a ditch. Lying in a fetal position is not indicative of “survival skills.”

A lack of fear may be, in part, what made him able to take off into the woods without apparent concern, resulting in a 6-day search that required the effort of over 6000 professionals and volunteers. Whether a lack of fear helped him to feel less afraid overall while he was in the woods is anyone’s guess. I hope he did not feel afraid the entire time, but not feeling fear at times that one is in danger can be and often is a critical safety issue for people on the autism spectrum.

An inability to feel hunger would perhaps make a person feel more comfortable or less concerned about the lack of food. The human body, including the body of an autistic person, can only go so long without food and water, whether or not the person actually feels hungry. For many people on the autism spectrum, the inability to feel hunger or to notice the effects of lack of food is an ongoing struggle and health issue, which can lead to chronic and sometimes severe malnutrition with lifelong consequences. Luckily, Robert was found before his body’s resources had been completely depleted.

As to not being able to feel cold or temperature extremes, again, the human body is able to tolerate only so much. Some people, both on the autism spectrum as well as “typical” people, are not bothered by extremes of temperature. I rarely feel hot and do not notice heat waves. I even live in a house that has no air conditioning. The only way I know there’s a heat wave on is because other people mention it to me. Other people are not bothered by extremes of cold. Whether or not a person notices or is bothered by temperatures, they have an effect on the body. If Robert did not feel cold, that was a comfort issue, not a safety or survival issue.

If he had managed to miraculously survive for a time period that was way outside the range thought to be the limits of human endurance, or if he had walked out of the woods unscathed, that might be something unusual, but, in fact, he was found in a serious condition, within the limits that have been given for someone his age, size, and weight. Robert was lucky: he was found within that time frame, the weather held, and, most importantly, people did not call off the search.

I hope you will print this letter so that people will not make assumptions that autistic people can escape unscathed from situations that would cause fear, hunger, or cold/heat in a more “typical” person. I do not know, and apparently those who know Robert do not know, whether he actually did feel fear, hunger, or cold. Regardless of what Robert may or may not have been feeling or thinking, the effects on the body are going to be similar, with not a lot of variation outside the parameters of what the human body is known to be able to survive.

Regards,

Paula C. Durbin-Westby

Snippets from article with other snippets added:

http://www2.timesdispatch.com/news/2011/oct/30/tdmain01-aspects-of-autism-might-have-helped-boy-e-ar-1420870/

"...it's possible that aspects of his autism helped him survive as much as they contributed to his disappearance. He was found lying in the fetal position in a ditch. (according to this: http://www.nbcwashington.com/news/local/Autistic-Boy-Who-Went-Missing-now-Facing-Another-Challenge-133039358.html)

“Educators familiar with Robert say his quiet determination and lack of self-awareness may have carried him through.” He was found lying in the fetal position in a ditch.

"The first thing that I thought of when I heard that he was missing and I went up there to go look for him is this kid's going to be OK. He's a very tough kid, he's a very resilient kid, he's resourceful in his own way"... He was found lying in the fetal position in a ditch.

"He's a … determined little boy, and I knew that … given enough time that we were going to find him because he would be able to kind of navigate his way out there and keep himself out of trouble." He was found lying in the fetal position in a ditch.

For one thing, Robert might not have been aware of how unsafe his situation was and as a result probably didn't become as panicked as another child might. He might not have been as receptive to the temperatures and to being hungry” ...He was found lying in the fetal position in a ditch.

"Robert slipped away from his father last Sunday afternoon within the 80-acre North Anna Battlefield Park in Doswell. For one thing, Robert might not have been aware of how unsafe his situation was and as a result probably didn't become as panicked as another child might.

"... He was probably just doing what he had to do to get through the days. He was found lying in the fetal position in a ditch.

"He'll navigate his world," ... "He's not just going to sit down and give up." He was found lying in the fetal position in a ditch.

”... A little kid like him being able to survive in the woods for five days speaks volumes about what that kid's made out of." He was found lying in the fetal position in a ditch.

“In the woods, it's likely that if Robert saw something that piqued his curiosity, he'd be on the move.” He was found lying in the fetal position in a ditch.

"He was probably wandering and exploring the whole time... While other children would have been very frightened, "he was probably just taking it as it came." He was found lying in the fetal position in a ditch.

“… he was "on the move and checking things out." Not unlike at school.. He was found lying in the fetal position in a ditch.

"Such a great outcome," … "We're just ecstatic about it." Me too. It was one of the happiest moments of my life when I heard he had been found-- but autism traits did not help him to survive in any ways that other children of the same size, age, weight, and exposure level might have survived. In fact, a typical 9-year old might have made efforts to come out on a road and ask for help. It does nobody any good to make this child out to be some kind of successful woodsman or survival savant.

Quiet Hands by Julia Bascom

2011-11-15T19:18:00.001-08:00

http://juststimming.wordpress.com/2011/10/05/quiet-hands/Almost everything I do of importance emanates from my hands: music, art, writing-which is my most accurate and useable form of communication. Julia's post is going viral and I am hoping to help it. It's one of the most cogent pieces on why it DOES NOT WORK to tell Autistic people (including and perhaps especially Autistic children) to not stim or flap our hands.

The Self-Advocate/Parent Dialogues at Thinking Person's Guide to Autism

2011-10-04T19:52:00.000-07:00

The Thinking Person's Guide to Autism hosted a series of dialogues between self-advocates and parents. The initial dialogue expanded to include more non-disabled parents, and parents who are on the autism spectrum.

The entire series of ten dialogues and comments is here:

thinkingautismguide.blogspot.com/search/label/dialogue

My contribution, on the last day, is here:

http://thinkingautismguide.blogspot.com/2011/09/self-advocateparent-dialogues-day-ten.html

Thinking Person’s Guide to Autism: The Self-Advocate/Parent Dialogues, Day Ten- Paula C. Durbin-Westby

I am happy to see the conversation being broadened by the inclusion of Melody’s Day Six post. At first I, and I think a number of Autistic parents, were watching the dialogue between non-disabled parents, and non-parent Autistic advocates from the vantage point of, say, a fan watching a tennis match. The ball goes back and forth but we are definitely sitting on the sidelines and not part of the action.

I am an Autistic parent. As this dialogue progresses, I feel a bit of pressure to say something to bridge the divide (somehow) between Autistics/people with disabilities and parents. At the outset, let me say that I am not writing in order to heal wounds, provide bridges, or smooth ruffled feelings. I am also not writing in order to antagonize people. As Cath Young responded to posts in Melody’s dialogue, “All activism has controversy and militant overtones to it. Change does not come easily and being meek does not get you what you want.” I do hope that something I write here, as an Autistic parent, will provide a way for Autistics (parents or not) and non-disabled parent advocates to come to a better understanding of each other. Nothing I say from here forward should be construed as claiming that all non-disabled parents or all people with disabilities do any particular thing. But I will need to make generalizations at times; otherwise there wouldn’t be much point in writing this.

I don’t tend to use the word self-advocate for myself, preferring the term disability rights activist, but if I had to make a choice between being on the “side” of “the self-advocates” or being on the side of “the parents,” I would find myself squarely in the camp of the self-advocates. This is because I always experience the world as a person with a disability, in this case autism. I can’t not be a self-advocate.

Here is the difference that propels me over into the self-advocate camp: When I am communicating with self-advocates in the disability community, even though I am a parent and most of them are not parents, we work together as equals. My competence is never questioned, even when I sometimes fail to do things as well as I wanted to, or as well as others in my community were hoping for. On the other hand, when I am communicating with non-disabled parents (and non-disabled people in general, if they know I am Autistic), too often the fact that I am a parent is not only not taken seriously, it is actually ignored or dismissed. I’d like to be wearing my “parent hat” but people keep knocking it off my head. I can’t number the times I have talked about being a parent at a meeting or conference and then listened as the other parents were addressed, or asked to make comments, or thanked, or called by name, leaving me, as a parent, completely out of the equation. The first time it happened, I thought it was a mistake. I have now come to expect it.

An interesting sub-thread in Melody’s Day Six dialogue brought up the issue of whether or not non-disabled parents are being given enough room to speak in these dialogues. At one point, the conversation turned on whether or not Melody was being seen as a parent, or whether, because she is Autistic, her parenthood was being dismissed. Part of the conversation seemed to be a misunderstanding, and the language used did not mean to limit Melody to being “just a self-advocate” (even if at points it did seem to do just that). As Ari said on Day Three, “Disabled people are always around the corner—but never in the room.” Even when we are in the room. It’s a weirdly unsettling feeling. I have had the urge to look at myself to make sure my body is still visible. Maybe I’ve inadvertently placed myself behind a potted plant! But, yes, I’m still there. I’m seen, but not seen as a parent. If it is at the end of the day at a conference, I am positioned as one of “the self-advocates” who helped “the parents” understand more about autism. Because parenting is such a huge part of who I am as a person, I can’t help feeling somewhat diminished by this sort of treatment, whether intended or not.

I also am much more likely to be treated as an overall competent person by other people with disabilities, whereas often I am treated as though I have limited understanding by non-disabled parents. Even when I do have limited understanding, there is a qualitative (and often a quantitative) difference between being always already assumed to be lacking somehow, and what I experience in my own Autistic and disability community-- where a lack is something that is not already anticipated or assumed, but is discovered in the course of working together, and addressed (not always effectively, I admit, but that’s better than the alternative).

Also, in what I am calling “my disability community,” I can frankly state what limitations I might have that are coming into play in any given situation. With the non-disabled community, I run the risk of, if I disclose a limitation, being shunted to the sidelines for everything else as well as the specific limitation I have disclosed. I know parents who are on the spectrum, who are not “out” about it, who tell me privately (after looking around surreptitiously to make sure no one is listening) that they are on the spectrum but are afraid their advocacy for their children will not be taken seriously if they disclose their own disability. There are Autistic parents who do “come out” as Autistic, and are not taken seriously thereafter when they advocate for their child with the schools or with other agencies. Although I might wish that more Autistic parents would disclose their identity status, I understand completely why they choose not to. Rachel’s comment on Day Three captures the dilemma nicely:

“Three years later, I'm still the same person, but suddenly, I've become a member of a misunderstood, ignored, stigmatized minority -- a minority in which my own assessment of my own experience is no longer given the respect it deserves, but questioned constantly by everyone from researchers to laypeople.”

In addition, if you do a search on “disabled parents” you will find all sorts of horror stories about people having their children taken away from them. If you do a search on “Autistic parents,” you will mostly not find anything, but there are a few links to things about how bad we are. Not conducive to wanting to come out of the closet. (I was also able to find a link to Melody’s AS Parenting site. Yay!)

http://www.asparenting.com/

Some parents here asked for concrete suggestions. My first suggestion is: If you know a person with a disability who is also a parent, and the topic is, at least in part, about parenting, don’t then refer to the person as a self-advocate only. That seems easy enough. Additionally, Find ways to actively engage the person (if they want to be actively engaged-- do check first) as a parent, and not just as a provider of information about what it’s like for them to be Autistic so that you can apply the information to your own child.

When I read Zoe’s Day One post in this dialogue, I think “Yes!” She lists quite a few reasons why people with disabilities are disregarded, and I’ve experienced most of them. Then, when I read Robert’s post from Day Five, it at first strikes me as another “we have to present a united front or no one will get anywhere” speech. I have heard this sort of speech from people in positions of power who wield political power and hold the purse strings to various funding sources. The call to present a united front, or a reminder that “the world is watching” generally does not come from relatively disempowered self-advocates. Since the call is not disability-specific, and is sometimes heard in the context of disabilities other than developmental disabilities, it can’t be blamed entirely on people with developmental disabilities’ purported cognitive inability to grasp the importance of banding together in the public eye. I do think Robert is trying, though, especially in his Day Five post, where he suggests that parents can “defer to self-advocating voices more appropriate to the discussion.” This brings me to my second suggestion. For non-disabled parent advocates in Robert’s position, as people who do get chances to be behind the microphone, have books published, and be in the limelight:
Defer to a self-advocate (parent self-advocate or non-parent self advocate) sometimes (even one time is a start!). Invite a person with a developmental disability in to do the speaking engagement in your stead (let people know you are suggesting a switch, don’t just spring it on them!) Not only that, but pay the self-advocate the same amount you would make. I can’t emphasize this enough. It sounds kind of radical as I am writing it! Don’t invite the person with a disability to speak for free, or for one-fourth of what you would make. I’ve been asked to speak for free or for expenses only, when I know that professionals and “experts” at the same conference were being paid reasonable speaker’s fees. This adult with a disability probably makes much less than you do, even if you need the money. Pay the person up front. They might not have enough in the bank to be reimbursed after the fact. Buy their plane ticket, or better yet, invite someone from your own locality. Invite someone who is not a famous self-advocate. Invite someone who is controversial even, who might not tell their version of “how I overcame adversity” because they haven’t (or haven’t yet and perhaps never will, and being asked to do something for free that other people get paid for certainly won’t help with this) overcome adversity or because they have a different agenda or focus. If you quote a self-advocate in a book, give them a part of your royalties. You are building your book’s popularity on the foundation of self-advocate comments (if it’s that sort of book). That will really be putting your money where your mouth is. If you are part of an organization that invites people to speak but does not pay them (small parent support group, for example), do treat the person as an equal adult. Remember, being treated as an equal does not mean not providing accommodations, when they are needed.

Because my child does not have a significant disability, some may be thinking that therefore I do not, and furthermore, cannot, advocate for your child with a more significant disability. Nothing could be further from the truth. I can, and I do, advocate for your child, as both a parent (even one who has trouble fitting in the “parent camp”) and as a disability rights advocate (self-advocate). I may not advocate for exactly what you want; you don’t advocate for exactly what I want for my child, either. But at times, we probably both do. Since 2008, I have worked to advocate for Autistic interests, including the interests of children, who will one day be adults. I have focused primarily on the Interagency Autism Coordinating Committee (IACC). In February 2009, I once again (I had been doing this for a number of IACC meetings; sometimes it takes a bit of persistence) advocated for inclusion of a meaningful approach to AAC in the IACC Strategic Plan. Here is part of what I said: “The Strategic Plan should recommend funding specific research initiatives into emerging promising communications technologies, both for those with no or little expressive language and for those who do have expressive language but cannot always access it reliably.” My comments can hardly be construed as being limited to “high-functioning” people or to those who can speak. At the end of this IACC meeting, there was a discussion about including a presentation on AAC at a future IACC meeting. Although the IACC had been in existence since 2007, it took until May 2009 to have a presentation about communication, which is one of the overarching difficulties for people on the autism spectrum, as well as with other developmental and intellectual disabilities. You can find my AAC comments in the IACC archives, and also, perhaps more easily, at these links:

http://paulacdurbinwestbyautisticblog.blogspot.com/2009/11/iacc-comments-february-4-2009.html

and
http://paulacdurbinwestbyautisticblog.blogspot.com/2009/11/may-4-2009-augmentative-and-alternative.html .

I also have advocated in my home state of Virginia for people with disabilities that are more significant than mine. Virginia was contemplating slashing the budget and taking huge cuts from waivers, at the same time funding the rebuilding of institutions. Although this has nothing to do with me or my family directly, I spent time opposing these measures. A couple of blog posts related to that advocacy for your children, more than for me or my child:

http://paulacdurbinwestbyautisticblog.blogspot.com/2010/01/virginia-budget-hearings-at-general.html

and
http://paulacdurbinwestbyautisticblog.blogspot.com/2010/03/charlottesville-daily-progress-budget.html .

Another person who advocates for your child, like it or not, is Kassiane. Suggestion:
Don’t dismiss the efforts of people with disabilities to advocate for your child. Listen to Kassiane. Listen to her truth. Whether or not she can communicate/type/speak “better” or “more,” than your child, you as a parent don’t want her to be homeless, or without health care access. You don’t want your child excluded from a class, whether a rock-climbing class or perhaps a general education class in elementary school. And, you as a parent don’t want to have to do it alone (as Kassiane all too often does) because that means that one day your child will be doing it all alone, too, not to mention that you need more allies along the way.

I was happy to see that Kassiane’s comments, which did provoke some discomfort, also encouraged a lot of supportive comments and even some concrete offers of assistance.

As a parent, I can so relate to wanting to protect a child, to ensure that accommodations are provided, that the child learns and grows. As parents, whether disabled or not, most of us would go to any length to care for our children (I am reminded of Kassiane’s caveat about abusive parenting so am not saying all).

My child is not neurologically typical, although I don’t like to write about him in detail publicly so won’t say more about him. I advocate for him when I need to, which is not as often as some other parents do, but which is necessary at times. In this respect, I can relate to other parent advocates, both with and without disabilities.

On the other hand, I can not relate to wanting to “normalize” a child. That’s something that I think is not possible or desirable. It’s a bit harder for me to place myself in the “parent camp” at times when the discussion turns on cures and normalization, because I don’t want to cure or “fix” my child and many parents (again, not all) do. Using Amanda’s terminology on Day Eight, our family fits into an ego-syntonic mold. If my son were to sneak around my room seeing what I read, it would be things like Women from Another Planet? or ASAN’s recent Navigating College. http://navigatingcollege.org/ I don’t have a lot of actual parenting books of any sort. Like Melody said, “I rarely take advice except to reassure myself of what I already know.”

Kristina’s post from Day Nine is instructive. The mother of a son who has a more significant disability in many respects than anyone who is posting here, Kristina has been open to actively learning from Autistics. Her husband Jim has recruited Autistic speakers, including some of the people who have contributed to this dialogue. To me, this seems a much more fruitful way to go about interacting than to set up a “self-advocate/parent divide.”

Finally, Autistic parent advocates have much to offer you and your child. Because of our parenting style—as Melody says “I take my life experience and apply it to my children. This is the Autistic parent way.”—we can be more tolerant of differences- in our own children and in yours, too. We might provide a model for thinking differently about parenting, children, parents and children with disabilities. Here is something I wrote, that is my favorite thing I have ever written, although it is short. It’s the essence of what I do as an Autistic parent in an ego-syntonic home (aside from the food, clothing, housing, education, emotional support, and shuttle-to-playdate things) to reduce the divide in this world between people with disabilities and people without, by promoting acceptance of all people with disabilities, one kid at a time. Here’s the teaser: “Mommy, the (LEGO) Power Miners hire people with disabilities. In fact, they are all autistic!” To read more, click here:
http://www.shiftjournal.com/2010/10/28/from-the-pro-neurodiversity-trenches/

Thank you to Thinking Person’s Guide to Autism for holding these dialogues. Thank you also to people on both sides of the “divide” for being courageous in telling your truths and courteous in how you have responded to each other. It’s not always easy (it never is, actually!) to open ourselves to really listening to point of view that initially seems radically divergent from our own. I was going to close by saying that I think people have done a great job of remaining respectful and listening to each other, but that seems too prescriptive. Some people are probably not doing a great job of it and I just have not seen or noticed it. What has bothered some people has not bothered others, and vice versa, as several people have noted. The important thing is that the dialogues are being held, and hopefully people will have learned things from each other.

NIH Workshop on Ethical, Legal, and Social Implications of Autism Research

2011-10-01T14:21:00.000-07:00

I was invited to attend the NIH Workshop on Ethical, Legal, and Social Implications of Autism Research. I'll be posting some of the comments I made when I get a chance.

http://iacc.hhs.gov/non-iacc-events/2011/elsi-workshop-agenda-sept26.shtml

Autism NOW Core Values Survey

2011-07-27T20:36:00.000-07:00

The Autism NOW Center Core Values Survey is now available! The purpose of this survey is to find out what people think about values and ethics as they relate to autism, developmental and intellectual disabilities.

https://www.surveymonkey.com/s/AutismNOWCenterCoreValuesSurvey

The survey is part of a process to create a Core Values Statement for the Autism NOW National Resource and Information Center. Please take the survey and let us know what you think! More information about the Autism NOW Center is at http://autismnow.org/

NOTE: As of August 6, 379 people have taken the survey. Please pass on to your lists, so we can get a wide sample of people from the autistic, autism, and developmental disabilities communities.

Oppose "Combating Autism Act" Re-Authorization: Contact Congress NOW

2011-05-26T08:46:00.000-07:00

Do we want three more years of THIS? 2012, 2013, 2014… How old will you be then? How old will your child be? Do you want an Interagency Autism Coordinating Committee that will work to help you or your loved one be able to be integrated into society via supports, services, communication technology, and other practical efforts? Do you want a Public Law 109-416 that addresses lifespan issues, or do you want one that focuses narrowly on “causes” and “cures?” I am going to single out the IACC, because the IACC is charged with reporting to Congress via the Combating Autism Act’s mandate.

Here's one example, from the IACC "Summary of Advances," of why the CAA’s status quo is unacceptable:

http://iacc.hhs.gov/summary-advances/2010/index.shtml#question6-articles

"Question 6: Lifespan - What Does the Future Hold, Particularly for Adults?
While no articles directly related to Question 6: What does the future hold, particularly for adult? were selected by the committee for inclusion in the final 2010 IACC Summary of Advances in Autism Spectrum Disorder Research, three articles were nominated in this category.."

Here, the full IACC voted on whether or not to include research on "the future for adults" and made sure not to give any weight or importance to adult issues. Maybe they are hoping there won't BE any autistic adults. I wonder what century they think THAT will happen in? In the meantime, three more years of the status quo, after FIVE years have resulted in an almost complete disregard of service-oriented and lifespan issues.

"Question 5: Services - Where Can I Turn for Services?"

Exactly ONE study was included, a study of early intervention services. While early intervention can be important, what about recent studies on topics such as transition, education, accessing community-based services, etc? Like I've said before, the IACC is not the place to turn if you are looking for research on services. They could have included services-related studies so that people could access the studies. At the same time the IACC could have been providing a service to both Congress and the public.

The Autistic Self Advocacy Network (ASAN) opposes re-authorizing the Combating Autism Act in its current, less-than-helpful form. Please join with us to demand a significant rewrite of the CAA.

ASAN’s Action Alert can be viewed here:

http://myemail.constantcontact.com/ACTION-ALERT--Tell-Congress-NO-to-More-of-the-Same-on-Autism-Policy.html?soid=1104220830834&aid=J6r8G9c_NWE

A bit.ly link is here, but sometimes bit.ly has spam, according to people I’ve sent links to:

http://conta.cc/jdEyjc

Today, Senators Menendez and Enzi will be introducing legislation extending the Combating Autism Act for three more years. The Combating Autism Act was passed in 2005 without the involvement or consultation of a single Autistic person, let alone the broader self-advocate community. Without legislative action by Congress, the Act would expire on September 30th of this year. While we respect the Senators' good intentions, the Menendez-Enzi legislation would freeze in place the current flawed CAA programs, which fail to make any provision for services, do not incorporate anything about adults on the autism spectrum and exclude self-advocates. As a result, ASAN opposes any long term re-authorization of CAA without badly needed investments in services and vital program reforms to ensure self-advocates are involved at every level. We're urging you to call your Senators and tell them to OPPOSE the Menendez-Enzi re-authorization legislation as too long an extension without any of the needed reforms. You can reach them through the Capitol Switchboard at (202) 224-3121 by giving your state and asking to be put through to your Senator. Making the call and urging their opposition is important even if you don't feel comfortable having a longer conversation. If you want to provide additional reasons to oppose this extension we have provided several below:

• A three year extension of the existing Combating Autism Act means a three year delay before Congress takes any meaningful action on services for Autistic people across the lifespan. It means three years before any new supports for adults on the autism spectrum are introduced and three years before any of the problems with the status quo are fixed. We can't afford to wait that long.

• CAA's existing programs enable a severe bias in the autism research agenda against services and adult issues. According to the recently released IACC Research Portfolio, less than one percent of autism research dollars spent in 2009 went to research relating to adults while only three percent went to research about improving services, supports and education! This inequity calls out for change.

• CAA's existing structure excludes the very people who should be at the center of the autism conversation: Autistic people ourselves. By locking in place for another three years a bill that was passed without the involvement of self-advocates, Congress would be sending a message that the needs and perspectives of Autistic adults don't matter.

Any long term extension of CAA must involve additional investments in services, greater inclusion of self-advocates in every program and more respectful language shifting from "combating autism" to supporting Autistic people. Call Congress today at (202) 224-3121! Remember to call twice in order to reach both of your Senators. If for accessibility reasons, you need to e-mail your Senators instead you can find their e-mails on the Senate website at http://www.senate.gov/general/contact_information/senators_cfm.cfm

We need your help to remind Congress they can't ignore the voices of the Autistic community. As always, Nothing About Us, Without Us!

Regards,
The Autistic Self Advocacy Network

translational research funding?

2011-05-11T15:56:00.000-07:00

"How about, instead of "Here's your autism diagnosis and your meds,"Here's your autism diagnosis and your AAC device, developed by funding translational research on communication" (which does have an impact on "behavior," including behavior that is commonly indicated for medication). I can dream, can't I? Note: AAC is not limited to people who do not speak."

More on this later. Just trying to get some thoughts down.

http://www.disabilityscoop.com/2011/05/10/autism-speaks-poaches-pfizer/13075/

A Short Pro-Neurodiversity Post

2011-05-01T18:59:00.000-07:00

As a “pro-neurodiversity” proponent, it is incumbent upon me to work to ensure that people with the most significant disabilities (as well as those with not-so-significant, or not-so-noticeable disabilities) receive supports and services. It means that I advocate so that people with significant disabilities do not have the budget (state or national) balanced at their expense. It includes advocating that research dollars be focused towards things that will help people live fulfilling lives, such as AAC and other communication technologies. Someone even recently said that I mostly focus on “low functioning” people. Yes, I sort of do, I guess. I do NOT like functioning labels, but other people find them extremely useful, and that was the phrase that was used. It includes advocating for respect for ALL people, regardless of "level" of disability.

It seems to be not clearly understood by many people that I (and other pro-ND advocates and self-advocates) could possibly ACCEPT someone unless I am somehow asserting that they do not have a disability. To me, this means that the concept of ACCEPTANCE is so incomprehensible to these folks that they assume I could not really accept anyone unless I am denying the existence of a significant disability. They couldn’t do it, so I must not be able to do it either. So much for theory of mind!

NOTE: I am not singling out anyone in particular here, as there are SO MANY people who think that same thing, that I’d have to remember who they all are and make a medium-long list.

When Is a Disability Not a Disability? Autism Speaks Has the Answer

2011-04-26T19:31:00.000-07:00

When is a disability not a disability? When it is a “disorder.” Geri Dawson of Autism Speaks made that clear yesterday in her report out from the Research and Innovation session at the White House autism event. She noted that her session had featured a lively conversation about the terms “disability” and “disorder,” and then weighed in on the side of “disorder.” She said that autism is a disorder, and went on to state that unless we think of autism as a disorder we will never think of it as a disability. Although that does not seem to make any sense at all, it’s actually quite astute. It’s not just “doublespeak,” either. It is critical to understand why it’s important to Dawson and Autism Speaks (and to those researchers who want to prevent autism). Dawson did bring up prevention more than once in her remarks.

Why quibble about two words, both of which begin with “D”?

When a person has a disability that person is still a person. That person with a disability has a body, and a mind. That person with a disability has needs, concerns, desires, a personal history, a context of family, friends, and community relations. A person who has a disability has all the legal and civil rights of personhood (or should). That person has (or should have) the right to make decisions (sometimes with assistance, sometimes not) about what they want for their life, including, at least during adulthood, the right to accept or refuse treatments, make choices about where to go and who to spend time with, and when. That person with a disability has the right to be treated with respect, to have their deepest dreams and desires taken seriously, even when the person has what is often called a “more severe disability.” There are documents such as the Developmental Disabilities Act (the DD Act) that presume that a person with a developmental disability has the right to self-determination, inclusion in the community, the right to care and treatment that maximizes the potential of that person with a disability. The DD Act specifies that no person with a disability can be subject to a greater risk of harm than to any other person in the general population. The DD Act offers protections via the Protection and Advocacy (P&A) system. Various other pieces of disability legislation protect people with disabilities. Legislation also protects, or attempts to protect, children with disabilities. Although they have fewer choices in terms of what treatments and interventions they might want to accept or not accept, children with disabilities are protected by law.

A disorder is not a person. A disorder is a collection of “symptoms” or “undesirable” conditions or traits. A disorder doesn’t have a body. A disorder doesn’t have a mind of its own. A disorder can’t be a child, perhaps a child in need of protection. As such, a disorder does not have any rights under the DD Act or any other act. Only people do. A disorder can be “combatted,” “cured,” “prevented,” and “eradicated” in any manner that researchers and others see fit. Autism Speaks has a habit of depersonalizing autism (remember the infamous “I... Am... Autism...” video with the creepy disembodied voice?) in order to justify eradication and prevention.

There is one problem with all this, and is the reason I think Geri Dawson’s comments are concerning and also very telling of Autism Speaks’ continued focus in eradicating autism. Those disembodied disorders? They are actually part and parcel of people, people with bodies, with brains and minds, people with disabilities. Every “cure,” “treatment,” and other intervention is not actually carried out against a disorder. It is carried out on and sometimes in, the bodies of real people, including children. Disability is embodied. It cannot be separated from the person who has it. Every attempt to eradicate a disorder has to be balanced against the fact that the disorder is carried within a person. Not so disembodied after all, creepy voices or tragic rhetoric notwithstanding.

Dawson made her comments during the report-out from each of the four breakout session groups. In the Education and Employment group which I attended, we had a productive and encouraging meeting, with much thoughtful and sensitive input from advocates and self-advocates. I heard similar comments from participants in the other sessions on Community-Based Services and Public Health and Healthcare. People were putting their heads together- exploring creative solutions, collaborating, with Administration officials asking thoughtful questions and being responsive.

When Dawson got up to speak, the effect was a big let-down. Here we were all moving ahead, getting ideas, making plans. The “disorder” comment was like a return to the past, a past where the only option was “cure the disorder so that society won’t be burdened with these people.” Dawson’s pronouncement was the only really discordant and almost irrelevant note in the proceedings, most of which seemed to be focused on the things that really matter- services, supports, creating more infrastructure for those services and supports, meeting people’s needs in terms of education, health care, employment. I am hoping that Administration officials, at least in some departments, will move ahead with forward-thinking programs and initiatives that will really help people on the autism spectrum, our families, friends, and communities. I hope less focus will be put on finding causes and cures and more on helping people to live to their fullest potential.

Thank you to the Obama Administration for hosting the event and to the Administration officials who listened and asked provocative and important questions.

Update: I've had the honor of having this published at:

Shift Journal of Alternatives: Neurodiversity and social change

http://www.shiftjournal.com/2011/04/29/when-is-a-disability-not-a-disability-autism-speaks-has-the-answer/

ASAN Alert: PBS Series "Autism Now" stereotypes autism and autistic people

2011-04-25T05:15:00.000-07:00

As many of you are aware, ASAN and others in the Autistic Community have significant concerns about this week's PBS NewsHour series "Autism Today". The series relies on old stereotypes against Autistic people and uses poor quality science to advance the personal agenda of the journalist, Reboert MacNeil, who put it together. Our concerns are as follows:

In interviews leading up to the airing, Robert MacNeil, NewsHour co-founder and reporter, made reference to many crude stereotypes about Autism and Autistic individuals and used rhetoric that dehumanized Autistic people. He stated in his interview, Autistic Americans lack "the most human thing we have, which is our ability to look into each others eyes and feel that other person's existence and what might be going on in their mind, and to empathize with them.";

No input from Autistic-run organizations or groups advancing an acceptance-oriented perspective about autism was sought in this supposedly "Comprehensive" approach to the autism spectrum and the issues surrounding it;

The series relies on disproven and scientifically dubious claims around vaccines and biomedical interventions with no basis in science.

We're providing our allies in the blogging, advocacy and academic communities with contact info for NewsHour below to urge you to express your concerns directly to the program and encourage you to send this information out to your networks through whatever means you deem most appropriate. We ask that you voice your opinion! Let it be known that a conversation about Autism should include Autistic people. The contact information is below:

Anne Bell

PBS NewsHour

ABell@newshour.org

Office: (703) 998-2175

Please bcc: info@autisticadvocacy.org so we can keep track of the progress of the campaign and make sure that PBS NewsHour cannot claim to have not received the e-mails you or those you contact

Disclosure Time!

2011-04-23T07:34:00.000-07:00

In response to an excellent guest column article about autism that appeared in my local paper, I wrote a comment and sent it in. My comment thanked the person who wrote the column, and then went on to talk about the Autism NOW Center, where I am Co-Director. http://www.autismnow.org/

I had been planning to write about the Autism NOW Center, since it's Autism Awareness (and Acceptance!) Month and it seemed like a good time to do so. But, I had not gotten around to it, because of all my work at the Center, and other work for the Autistic Self Advocacy Network, and writing and index, and directing my choir.

Speaking of my choir, there was another thing I had never gotten around to: telling everyone in my choir that I am on the autism spectrum! It may seem odd to you, but it just never came up. When I thought about stopping a choir rehearsal to make an announcement ("Choir, please close your hymnals. There's something I've been meaning to tell you...") I just could not ever find the right time or situation. Not to mention that someone is always absent and if I was going to do that, I wanted the whole choir there. My letter to the editor discloses to all and sundry in the Central Virginian readership area that I am on the autism spectrum. It didn't seem to make sense to write about the Autism NOW Center and mention me being the Co-Director without saying I am on the spectrum!

The paper contacted me about my letter, and I talked with an editor about a few details. He said it might be printed in the next edition of the paper. I showed the letter to my priest at church and she asked the provocative question: "Would you rather have them read it in the paper or hear it from you?" My initial thought was "Have them read it in the paper! That way I don't have to say anything at choir!" I have been talking about autism publicly for several years, and feel quite comfortable standing up in front of a room full of strangers to give presentations on various autism and disability-related topics. But talking to a small group of people that I have been directing musically for... almost five years (a little bit longer than I have had an autism spectrum diagnosis)? It was time. Gulp.

So, I "came out autistic" to my choir. We had what can only be described as an entertaining few moments away from rehearsing the music for all our Easter services. Beforehand I was literally about as nervous as I would be if I saw an oncoming truck headed my way! In other words, I was terrified. Really. I can't even describe it. My choir being the wonderful people they are, they put me at ease. Also, the priest had given me some good lines to use. I actually memorized her suggested lines and used those. Thanks, Rev. Ann!

So.... the article did not come out in the paper.... yet. When I got to church on Thursday night everyone was saying "Well, after all that, where's the article?!" They were all looking forward to seeing it. I am hoping it will be in next week's CV as I hate to disappoint!

Stay tuned.....

Fact Sheet on Cafe Press donations to Autism Speaks

2011-04-08T07:06:00.001-07:00

http://conta.cc/ggJ6mz

FACT SHEET: CAFE PRESS AND AUTISM SPEAKS

Earlier this week, Cafe Press announced that the company will be donating 10% of all purchases on products tagged with "Autism" to Autism Speaks. Cafe Press is a popular online store which allows individuals to sell t-shirts, mugs and other merchandise with their own designs. Many within the autism and Autistic communities use this website to sell their designs, including many Autistic adults who oppose Autism Speaks.

We are appalled by Cafe Press forcing vendors to raise funding for Autism Speaks against their conscience and the lack of options for those who wish not to support this organization. Anyone who has ethical problems with Autism Speaks is now being forced to give money to the organization. With Autism Speaks' blatant exclusion of Autistic adults on their board of directors and in executive positions, negative message about Autism, and propagation of stigmas and stereotypes of Autistic people, there should be a choice.

ASAN has compiled this briefing sheet with contact info for Cafe Press to help you rally the community to contact Cafe Press and tell them how you feel. With only 4% of funds raised by Autism Speaks going to services for Autistic individuals and their families, we should all take a firm stance to tell Cafe Press that this must end. Please take the time to e-mail and call Cafe Press and to urge all those you can reach to do the same.

THE ISSUE:

Cafe Press, a popular online store that allows individuals to sell t-shirts, mugs and other merchandise with their own designs on it, is donating 10% of the purchase price for all autism-related products to Autism Speaks in the month of April.

TALKING POINTS:

- Autism Speaks is an organization which fails to include a single Autistic adult on their board of directors and more than token representation in other parts of their organization.

- Only 4% of the funds donated to Autism Speaks go to services for individuals and families.

- Autism Speaks’ advertising relies on fear and pity to raise money and results in increased stigma and stereotypes about Autistic people.

- By automatically donating funds to Autism Speaks on all autism related purchases, Cafe Press is forcing shopkeepers who have ethical problems with Autism Speaks to give money to an organization they oppose.

SAMPLE E-MAIL:

Dear Cafe Press:

I’m writing as a customer to express my disappointment with your decision to donate 10% of all sales of autism-related products to Autism Speaks. Autism Speaks is not a neutral or non-controversial charity. Many adults on the autism spectrum and family members have grave concerns about Autism Speaks’ operating practices and fundraising tactics. Autism Speaks fails to include any Autistic adults on their board of directors or in executive positions. Furthermore, only 4% of the funds donated to Autism Speaks go to services for individuals and families. Many people who care about autism issues find Autism Speaks' advertising and fundraising strategies – which rely on fear, pity and spreading stereotypes about Autistic people – deeply unethical. By forcing your vendors and customers who sell and buy autism-related products to donate money to an organization they are morally opposed to, you break the bonds of trust that connect you with your customer and vendor base. I urge you to reconsider your donation to Autism Speaks – and I will be withholding my business from Cafe Press until you do.

Sincerely,
[NAME HERE]

CONTACT INFO FOR CAFE PRESS:

Bob Marino, President: bmarino@cafepress.com
Monica Johnson, CFO: mjohnson@cafepress.com
Abdul Popal, VP Business/Dev Operations: apopal@cafepress.com
Amy Maniatis, VP Marketing: amaniatis@cafepress.com
Sumant Sridharan, Head of Online Acquisitions: ssridharan@cafepress.com
Kara Parsons, VP Consumer/Retail: kparsons@cafepress.com
Marc Cowlin, Public Relations Manager: mcowlin@cafepress.com
Cafe Press PR Department Phone Number: 650-655-3095

Please bcc: info@autisticadvocacy.org so we can keep track of the progress of the campaign and make sure that Cafe Press cannot claim not to have received the e-mails you or those you contact send.

Neurotypical Discussed in Review of Autism Movies

2011-04-04T11:49:00.000-07:00

http://www.guardian.co.uk/film/filmblog/2011/apr/04/autism-best-film-portraits

"Of the overviews, the two best I've ever seen are The Autism Puzzle, made in 2003 but still very relevant, and the last year's Neurotypical."

Read more at the link above!

Not Everyone On Board With Autism ‘Awareness’

2011-04-01T11:06:00.000-07:00

Not Everyone On Board With Autism ‘Awareness’

by Michelle Diament

This article addresses the new movement for an Autism Acceptance DAY and MONTH.

Through Facebook, a budding movement is growing among those hoping to shift the conversation from one focused on a cure to an effort centered more on tolerance.

“I was a bit tired of seeing ‘awareness day’ events tied to organizations that are asking for donations,” says Paula Durbin-Westby, 52, who has autism and started a Facebook event called “Autism Acceptance Day” after hearing from others who felt hurt by traditional awareness events that didn’t highlight positive aspects of the developmental disorder.

http://www.disabilityscoop.com/2011/04/01/not-everyone-awareness/12761/?utm_medium=email&utm_campaign=April+1%2C+2011%3A+News+from+Disability+Scoop&utm_source=YMLP&utm_term=

So far we have just over 1000 people signed up. I am going to figure out how to make the event last all month!

Autism Acceptance Day radio program on AWN radio

2011-03-30T10:47:00.000-07:00

On April 1, Autism Women's Network will be doing a radio show on Autism Acceptance Day! Please join us at the link below at 1 pm east coast time.

http://www.blogtalkradio.com/autism-womens-network/2011/04/01/autism-acceptance-day

Here's the text from the announcement on AWN's radio site:

Join us for a special show for Autism Acceptance Day! Paula C. Durbin-Westby will be with us discussing the importance of acceptance and how it affects the lives of autistic people. Paula is Program Coordinator for the Autistic Self-Advocacy Network (ASAN) and was on a panel for the Interagency Autism Coordinating Committee (IACC). This day is significant because it is at the beginning of Autism Awareness Month and lets the world know that we need something much more powerful than just awareness...we need acceptance! We will be taking calls and voicing comments from the chatroom from autistic people and those who support and care for them who would like to express what acceptance means to them. Please call in at 917-889-3527.

The Facebook event is at:

http://www.facebook.com/#!/event.php?eid=207480192599697

Autism Acceptance Day- the Blog

2011-03-28T15:33:00.000-07:00

http://autismacceptanceday.blogspot.com/

The blog is a response to a request by non-Facebook people to start an Autism Acceptance Day site somewhere other than Facebook. If you would like to post, comment, etc., I have repealed my longstanding "rule" against having comments on my blog (the reason for the rule is that I can't keep up with them). Please visit the blog and add POSITIVE images of autism, your articles about acceptance, links, etc. Anything original you write is YOUR intellectual property, not mine! I have enough of my own already!

The Facebook event is here:

http://www.facebook.com/#!/event.php?eid=207480192599697

The Autism Women's Network blogradio event is here!

http://www.blogtalkradio.com/autism-womens-network/2011/04/01/autism-acceptance-day

Frequently Asked Questions about CDC’s Proposed ICD-9-CM Diagnostic Code for Wandering Behavior

2011-03-23T09:18:00.000-07:00

Frequently Asked Questions about CDC’s Proposed ICD-9-CM Diagnostic Code for Wandering Behavior

Prepared by the Autistic Self Advocacy Network

http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=131

Q: What is this proposed “wandering” code that so many people are talking about?

A: The Center on Disease Control and Prevention (CDC) has proposed the addition of a new diagnostic code to the International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM) for wandering behavior . The ICD-9-CM is the United States government’s official system of assigning codes to medical diagnoses and procedures.

Q: Why are disability advocacy and professional organizations concerned by this new proposed coding?

A: Disability advocacy and professional organizations from a wide variety of backgrounds, including the Autistic Self Advocacy Network (ASAN), The Arc, TASH, the National Association of State Directors of Developmental Disabilities Services (NASDDDS), the National Disability Rights Network (NDRN) and others, are worried about the potential unintended consequences that may emerge from a medical diagnostic code for wandering behavior. Some of the reasons for these concerns include:

- No research exists to classify “wandering” as a medical rather than a behavioral phenomenon and the code has no definition that would differentiate wandering as a medical symptom from behavior of individuals who simply wish to move from one place to another for any number of reasons.

- By turning the behavior of wandering into a medical diagnosis, people with disabilities with the most significant challenges in communication could be made more vulnerable. For many adults and children who cannot speak, attempting to leave a situation is one of the few options available to communicate abuse, a sensorily overwhelming environment or boredom from repetition of the same tasks over and over. By creating a medical code for wandering, professionals could misinterpret behavior as a medical symptom and miss the legitimate concern the individual is trying to communicate..

- A wandering code could be utilized by service-providers, educators and other professionals to restrict the freedom of people with disabilities, particularly those in residential service-provision settings. This code could easily be used to justify the use of overly restrictive placements and techniques, such as restraint and seclusion, institutionalization, restrictions on freedom of movement and chemical restraint.

Q: Isn't this code just going to help gather data?
A: One of the stated objectives of this code is to help gather additional data on wandering behavior. However, that is not the only purpose of this new coding. First, advocates of this proposed wandering diagnostic code have stated from the beginning that part of the purpose of this is to shift clinical practice as well as to get private insurance to pay for tracking devices and other anti-wandering measures. Second, CDC’s proposal states that among the things this proposal is designed to promote are provider deliberations on safety. While safety discussions are important and necessary, many advocates are seriously concerned that this wandering code will skew those discussions to increasingly more restrictive service-provision settings as “preventative measure” against wandering.

Furthermore, there are other methods of gathering data than creating an ICD-9-CM medical diagnostic code.. Questions on wandering behavior have already been added to a national health survey to be conducted by the Health Resources Services Administration (HRSA) as well as to an additional survey effort organized by private funders. This represents a much less intrusive way of gathering information on this phenomenon without labeling people and without the potential unintended consequences associated with a medical wandering ICD-9-CM diagnostic code.

Q: I’ve heard conflicting things about the public’s opportunity to comment on this coding. Some people have said that the proposal was made available months in advance – others have said that the CDC only informed the public about this new coding the day before the public hearing on the topic was scheduled to occur. What’s true?
A: While the agenda for the public hearing on new ICD-9-CM codes was made available in February and wandering was listed as a topic under the agenda, details of the proposal – including the lack of any operational definition of wandering and the broad language the proposed code utilizes – were not made available until the evening of March 8th, the day before the March 9th-10th meeting of the ICD-9-CM Coordination and Maintenance Committee meeting. As a result, by the time that advocates had the opportunity to review the specifics of what CDC’s proposal included, the public hearing had already been closed to new attendees.

Q: What does the research say about wandering and the advisability of an ICD-9-CM code for it?
A: No research exists that suggests that wandering behavior is a medical rather than a behavioral issue. Of the seven citations CDC uses in their proposal two are incidence studies used to establish the rate of intellectual disability and autism spectrum disorder in the general population, four are studies used to establish that wandering occurs in the intellectual and developmental disability population and that deaths do sometimes occur at the same time that accidents occur, and one is an online survey from an advocacy group’s website. None of the seven citations includes any information that supports looking at wandering as a medical rather than a behavioral issue.

Q: What about children who wander and are injured or even die, and what do the opponents of this new code suggest we do to help them?
A: A number of options exist for addressing wandering behavior that results in children and adults ending up in dangerous situations, without resorting to overly restrictive or even abusive practices, or needlessly restricting freedom of movement of people with disabilities. One proposal that has received support from advocates on both sides of the proposed ICD-9-CM code would be to include children with disabilities in the AMBER Alert system, which exists to mobilize communities to respond to abducted children. Other options that have been proposed include additional educational and behavioral supports, accessible swimming lessons, police training and other measures, which do not carry the same risks as an ICD-9-CM diagnostic coding.

Q: Who will be making the final decisions about this coding and how can I communicate my opinions on it to them?
A: The final decision on the coding proposal will be made by the Director of the National Center for Health Statistics within CDC, Dr. Edward J. Sondik.The period for written public comment extends to April 1st, 2011. Written public comment should be e-mailed to Donna Pickett at dfp4@cdc.gov or sent by regular mail to the address below:

ATT: Wandering ICD-9-CM Code
National Center for Health Statistics
ICD-9-CM Coordination and Maintenance Committee
3311 Toledo Road, Room 2402
Hyattsville, Maryland 20782

April 1 is Autism Acceptance Day- a different kind of “awareness”

2011-03-21T12:50:00.000-07:00

A couple of weeks ago I started a Facebook event called “Autism Acceptance Day.”

http://www.facebook.com/#!/event.php?eid=207480192599697

Within 20 minutes, 81 people had signed up. Currently the total is 572. The response indicates that people, both on the spectrum, parents and family members, cross-disability allies, and others, are ready for something more positive during the (sometimes dreaded) month of April.

Autism Acceptance Day is intended to be a corrective to some of the “awareness” events that start out with “Autism is more prevalent than pediatric AIDS…,” or references to “one in 110!,” references to awareness that don’t include the perspectives of people on the spectrum, etc. My statement at the top of the event page is: “This is the Autism Acceptance Day Facebook event. ACCEPTANCE, not tolerance, not "yes, but...", just acceptance. Pro-neurodiversity, pro-supports and services, against "cures." Please join and post links to your favorite acceptance and neurodiversity sites, blogs, and organizations.”

Autism Acceptance Day is not sponsored by any organization. It’s mostly an online event, although I am trying to plan some activity, if I can get some free time (since I also need to be at work that day) on the day, and I will be online of course! Any sort of pro-neurodiversity, pro-acceptance activity is encouraged! This is the first year of Autism Acceptance Day and there’s no reason why it can’t be an annual event!

Re: the date. I think the first “World Autism Awareness Day” was started by Autism Speaks. It was (and still is) April 2, not April 1. I guess Autism Speaks was worried about “April Fool’s Day.” I have picked April 1 for Autism Acceptance Day, because it’s the first of the month, because two “events” can happen on the same day without too much trouble, and because it’s not the day Autism Speaks picked! It’s also sort of odd to start an “awareness month” on the second day of the month just because you’re concerned that the first day is already “taken.” Some people have expressed concern that it’s the same day as April Fool’s Day and that someone might be offended, but I don’t see April Fool’s Day as a major holiday. But maybe that’s because I am the last person to understand a joke, including the type of practical jokes that some people do on that day. ;)

If you are on Facebook, please sign up for the event to show your support for Autism ACCEPTANCE. If not on Facebook, consider promoting Autism ACCEPTANCE during the month of April.

CDC credibility questioned: "wandering code" not based on research

2011-03-17T08:43:00.001-07:00

Recently the Autistic Self Advocacy Network launched a petition opposing the CDC's proposed "wandering code." Please sign the petition, and more importantly, contact Donna Pickett, Co-Chair of the Coordination and Maintenance Committee, at DPickett@cdc.gov to let her know that this proposed code is misguided, potentially dangerous to people with disabilities including autism, is not even remotely based on scientific evidence, and calls into question the CDC's motives and credibility.

http://www.change.org/petitions/tell-the-cdc-no-on-abuse-enabling-wandering-code?signatures%3Fopt_new=f&opt_fb=t

The CDC proposal is on page 17 of this long document.: http://www.cdc.gov/nchs/data/icd9/TopicpacketforMarch2011_HA1.pdf
The CDC proposal is not evidence-based. It is based on speculative "research" and would include people who make *choices* to leave a situation, such as an abusive guardianship scenario. It also does not seem to me to actually protect anyone, but just to add another diagnosis code. The purpose of the diagnosis code, according to the CDC, is to promote "data collection" which "could" lead to awareness and appropriate responses. It could also lead to controlling a person's legitimate choices, and if the code follows a person throughout their lifetime, could have unintended limiting consequences later in life. Awareness could be increased through other means, and safety measures could be taken without having a diagnostic code.

The Autism Science Foundation has a post supporting the wandering code. It's interesting that the Autism Science Foundation supports an added diagnostic code that is not based on even the sketchiest of evidence-based methodology. The NAA has a survey of parents that suggests that 92% of parents asked said their child had wandered off at least once. Not that the NAA has resources to set up an experiment but I wonder if parents in a control group had been asked, if they also might have said their non-autistic child had *also* "wandered off at least once." The fact that the CDC, which is supposed to be a reputable, science-based federal agency, is basing the decision to add a wandering code, brings the CDC's credibility into question. All six of the supposed benefits mentioned by the Autism Science Foundation, that would supposedly come from adding a wandering code, are speculative. There is no indication that a wandering code would make people more aware, more safe, be subject to less restraint rather than more. I can imagine someone with a "wandering" diagnosis being restrained for convenience by special education personnel, because who would want to take the risk of having someone wander off while they were responsible?!

A child who receives a wandering diagnosis will carry it into adulthood. Some of the unintended consequences of this could be increased guardianship, inability to escape from abusive situations, limitations on adult people's legitimate choices to go places without informing others, and assumptions that people with disabilities need "more supervision" throughout the lifespan, among others. The ONE thing that a wandering code will do is increase "data collection," which would be a good reason for the CDC to adopt it. One "data collection" conversation coming out of the discussion on wandering, at the April 30 2009 full IACC meeting, included contacting people whose family members had died a "tragic death" to donate brain tissue. That short discussion can be found at page 319-321 of this document:
http://www.iacc.hhs.gov/events/2010/transcript_043010.pdf

Interestingly, in the same discussion, several more appropriate ways of dealing with wandering and safety were brought up and discussed, such as Project Lifesaver tracking equipment, swimming lessons, law enforcement training, and home security measures. No wandering code can address these practical matters.

Oppose medical diagnosis for "wandering" related behavior

2011-03-14T08:00:00.001-07:00

Hello!

Will you help us stand up for disability rights? Last week, the ICD-9-CM Coordination and Maintenance Committee met to discuss the future of medical coding in the United States. The ICD-9-CM stands for the International Classification of Diseases, Ninth Revision, Clinical Modification, and is the US government's official system of assigning codes to medical diagnoses and procedures. The day before the meeting, the Centers for Disease Control and Prevention (CDC) posted for the first time information on the codes under consideration - including a new medical diagnosis for "wandering" related behavior in children and adults on the autism spectrum and with other developmental disabilities. If approved, this new coding promises to label hundreds of thousands of children with "wandering" diagnoses that would make it easier for school districts and residential facilities to justify restraint and seclusion in the name of treatment. Furthermore, this diagnosis carries no clear definition and the CDC's proposal uses poor quality research to claim that it should apply to the majority of autistic children and those with other developmental and intellectual disabilities.

The CDC's last minute proposal was made public only the day before the public hearing on these coding was scheduled to occur - well after the registration for people to give public comment had closed! Our only chance to have our voices be heard is to flood the written comment session before that deadline passes on April 1st. Our goal is to reach 3,000 signatures and we need more support. You can read more and sign the petition here:

http://www.change.org/petitions/tell-the-cdc-no-on-abuse-enabling-wandering-code?share_source=share-petition_em&ue=sei

Thanks!
Ari Ne'eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
info@autisticadvocacy.org
(202) 596-1056

Cultural competence

2011-03-04T08:32:00.000-08:00

I'll be adding to this. I have a short paper but this is the only part I am publishing right now.

Cultural competence indicates the awareness of, and ability to interact in a respectful and responsive way, with people of different cultures. The ability to interact across cultures implies acceptance of the culture that is not one’s “home” culture. It implies an openness to the other culture, willingness to try to understand, and other respectful communication skills. It is not one-way, or “top-down,” or “dominant culture instructing the minority culture.”

Cultural competence around autism, and needs of people on the spectrum: The typical approach to autism is to try to “reduce autistic behaviors” through various means- behavioral interventions, medications, sometimes even restraints and seclusion. A common presumption is that autism is negative, unwanted, something to eradicate. Rarely is the focus on what the person on the autism spectrum thinks, desires, wants for themselves. Nowhere is this more apparent than in the assumption that people on the spectrum, in addition to having a disability, in addition to having different neurological “wiring,” do not know what they want, think, or desire. From this attitude stems a string of misunderstandings and injustices, often perpetrated quite unwittingly on people with disabilities, who are required to “fit in,” behave “typically,” and adapt to the dominant paradigm. The problem applies to children, teens, and adults. People on the spectrum are simply not consulted about their dreams, wishes and desires.

Cultural competence regarding Autistic community and neurodiversity: People who do think positively about themselves and their autism are dismissed, their adamant desires and attempts to simply be who they are taken as signs of disordered thinking. Self-determination includes the right of the individual to be who and what they are without undue interference, and a position of support for the individual’s rights to their own belief system, way of life, interests, friendships, modes of communication (whether required communication modes and technology or preferred communication modes and technology).

© Paula C. Durbin-Westby March 4, 2011

Autism NOW Center: From the Co-Director's Chair

2011-03-01T14:16:00.000-08:00

This is my initial post for the Autism NOW Center's new website. The website is at www.autismnow.org

Hello!

First, I’d like to welcome you to the Autism NOW Center. Whether you are a person on the autism spectrum or with another developmental or intellectual disability, a parent (including parents on the spectrum), or other interested person, I hope you will find information and resources that will be of value to you.

As a person on the autism spectrum, I am very excited and pleased to be a part of the Center. The Arc and the Center have demonstrated a real passion for engaging people with developmental disabilities in meaningful leadership positions. My position here is not as “the token person on the spectrum.” As Co-Director, I take a lead position in developing and implementing all aspects of the Center’s activities. My vision for the Autism NOW Center includes ensuring that resources are relevant for people on the spectrum as well as others. Respect for our neurological disabilities and differences is one area I will focus on. I also want to make sure that people on the spectrum and with other disabilities feel comfortable using the website and participating in Autism NOW events. I will work to ensure that people can access the site easily and are able to be a part of the Center and our activities. Self-advocates will not be limited to being talked “at” or talked “about,” but participating “with,” as equals in all aspects of the Center.

I encourage you to contact me with questions, suggestions, and concerns. My contact information is below:

Paula C. Durbin-Westby
Co-Director
Autism NOW National Resource and Information Center
1660 L Street, NW, Suite 301, Washington, D.C. 20036
Phone: 202.600.3489| Toll free: 800.433.5255
Fax: 202.534.3731 | Cell: 540.223.6145
E-mail: pdurbinwestby@autismnow.org

Neuro-typical.com: New Documentary about Neurodiversity and Autism

2010-11-11T11:48:00.000-08:00

I was filmed for this documentary, which is finally finished and making the rounds of various film festivals.

http://neuro-typical.com/

From the main page:

“Neurodiversity may be every bit as crucial for the human race as biodiversity is for life in general.” -Harvey Blume, New York Times

What is the standard that identifies one person as whole and capable and another as disabled and broken?

Neurotypical includes, among the many voices of autistics, those who take exception to the notion of being “cured” and those who offer, through their very lives, a view of what fulfillment might look like.

The film is structured as a triptych by following three individuals on the spectrum. Part one will focus on Violet, 3; part two, Nicholas, 14; and part three, Paula.

View the trailer here:

http://neuro-typical.com/page4/page4.html

or here:

http://www.vimeo.com/16632241

The film also has interviews with many other people, most of them on the autism spectrum.

UPDATE! Neurotypical will premiere at the Thessalonki Documentary Festival! This is all very exciting.

http://neuro-typical.com/page3/page3.php

The film also was mentioned in Variety:

http://www.variety.com/article/VR1118031942?refCatId=19&query=embraceable

A Facebook Message to Buzz Aldrin: Autistics Speaking Day

2010-10-28T21:56:00.000-07:00

I sent this email to Buzz Aldrin. Yes, the Buzz Aldrin who once landed on the moon and who is now a supporter of this: https://communicationshutdown.org/

which claims to raise "autism awareness" by having people voluntarily shut down their Facebook sites for one day (it *will* raise quite a bit of money for the organizations jumping on the "communication shutdown" bandwagon).

The "Communication Shutdown" (EVERYONE COMMUNICATES!) website says that "For one day, you can have some idea of what it's like."

No, you won't get an idea of "what it's like" by sending money to the organizations whose logos pop up in little quote balloons in site's video. What you will get is a chance to send money to an autism organization.

Anyway, here's my email to Buzz:

--

Hi Buzz, I will be en route from Virginia to Florida on November 1st. I’ll be watching STS-133 take off, and remembering the moon walk, which I saw when I was 10 years old, and I’ll also be hoping you read this email. November 1 has been designated as Autistics Speaking Day, as an alternative to the somewhat misguided idea that autistic people do not communicate. If I can get online, I will be communicating in the mode that is most comfortable for me as an autistic person- social networking sites, email, chat rooms. If the “communication shutdown” people had managed to close ALL of Facebook for the day, many of us would lose our access to the way we communicate. Many of us type but not talk, or type better than we speak. We don’t need stunts like “communication shutdown” that suggest we don’t communicate. Even people who do not speak at all [and I should have said "use language-based communication including writing...] but who use gestures, facial expressions, etc., are communicating. Everyone communicates!

Thanks for reading, and here’s the official Autistics Speaking Day site:

http://www.facebook.com/#!/event.php?eid=140107279369668

From the Pro-Neurodiversity Trenches

2010-10-25T19:56:00.000-07:00

© From the pro-Neurodiversity trenches:

Early intervention and treatment is important! If caught early enough, negative attitudes toward autism and other disabilities can be minimized and even reversed!

Read more below to see what happens in our disability-rights oriented home. These comments were taken down by the mom of an almost eight year-old:

“Mommy, the (LEGO) Power Miners hire people with disabilities. In fact, they are all autistic!” [A bit later, after a lot of “truck noise”--] “Mommy, look at this; this is the Power Miner with the disability. Can you tell what disability he has?” [I look; he has one hand]. Me: “He has one hand. Is that his disability?” “Yes, but he only has to operate this lever with one hand.. and boy, he can throw that dynamite!, … and this one is autistic. But he can really drive that truck. And this one is autistic too.” [More truck and heavy equipment mouth noises.] “I know what I’ll put on the sign: ‘Disability rights for Power Miners… um… Power Miners with disabilities are allowed.”

Think about it. Neurodiversity: Acceptance for neurological differences and disabilities. Autism acceptance.

Fast forward to the future (when they have become adults): This is the "kid" you want working in HR when your child applies for a job. This is the kid you want to be a neighbor living next door to your kid. And, right now: This is the kid you want in your child’s class at school (but right now he is being homeschooled- sorry!) This is the kid that I wish could be transported around the country to have playdates when I read about a child who is lonely and does not have anyone to play with and I feel sad and want to do something for that kid and know that my kid might be at least part of an answer.

Parents, teach your children well, I'd say, but I have not "taught" him this lesson. He gets it instinctively from the openness we have about disabilities including but not limited to autism, and from our openly autistic friends, and from meeting and interacting with, and playing with or near, children on the spectrum.

“Introducing…… Drill Destroyer! Here’s the guy with the disability…. This one is autistic!” ©

P.S. My child is not the "perfect playdate." He's a kid. He will complain or tattle or say "No fair" as the situation demands, from his POV!

Here is a link to the same article, only on a much nicer-looking and very interesting website, Shift Journal:

http://www.shiftjournal.com/2010/10/28/from-the-pro-neurodiversity-trenches/

http://www.shiftjournal.com/

November 6, 2010: Join local Autistic Activists against Autism Speaks

2010-10-17T11:25:00.000-07:00

Members of the Washington, DC Metropolitan Area Chapter of the Autistic Self Advocacy Network will be demonstrating against Autism Speaks’ Walk for Autism on Saturday November 6th on the National Mall from 8:00am - 1:00pm. Autistic Activists and their allies across the disability community will carry signs and distribute fliers to walk participants between 14th & 15th Streets and Jefferson & Madison Drives. The National Mall demonstration is part of a series of demonstrations being held across the United States this autumn.

This demonstration is intended to draw walk participants’ attention to Autism Speaks’ lack of representation for those it claims to serve; its exploitative advertising and fundraising practices which compare having a child with Autism to being in a fatal situation, and the failure of Autism Speaks to spend money in ways that help Autistic people across the life-span.

Please join local Autistic Activists demonstrating against the upcoming Autism Speaks' Walk for Autism Charity Fundraiser on November 6th. All prospective demonstration attendees are encouraged to bring their families and friends, the more people that support us the better! We will start to gather at 8am between 14th & 15th Streets and Jefferson & Madison Drives. All who plan to attend are encouraged to bring a demonstration sign with them, please make a large sign with a slogan such as: Nothing About Us Without Us!, I am A Person Not A Puzzle Piece!, or Autism Speaks Does Not Speak For Us!

All those who plan to attend the demonstration, please email asanwashingtondcmetro@yahoo.com so that we know who to expect!

Exclusive: First Autistic Presidential Appointee Speaks Out

2010-10-06T08:01:00.000-07:00

http://www.wired.com/wiredscience/2010/10/exclusive-ari-neeman-qa/all/1

by Steve Silberman

<>"...
The neurodiversity movement takes the concepts of self-determination and equal legitimacy that we as a society have applied to differences of race, religion, gender, sexual orientation, and other disabilities, and applies them to the fact that people are born with different types of minds as well. Instead of asking, “How do other people think we should be?” we’re asking, “What do we want for our own lives?”

The goals of the neurodiversity movement coincide with the goals of the broader disability and civil rights movements. We have a lot of solidarity between us. When a hold was put on my nomination last spring, I was grateful to have the support of groups like the American Association of People with Disabilities and the Leadership Conference on Civil and Human Rights. What we’re all trying to do is in the grand historical tradition of people fighting to achieve equal opportunity and control their own destiny."

Neurodiversity Movement

2010-09-13T19:46:00.000-07:00

This is my current answer to the question "What is the neurodiversity movement?" I will probably tweak some of the wording as time goes on but I doubt I will change any of the basic content.
--

The neurodiversity movement is the practical application of the idea, and the fact, of neurodiversity- neurological diversity is present in the human race whether or not one chooses to accept that fact.

The neurodiversity movement includes people, with and without disabilities, who advocate for acceptance of neurological differences and disabilities. Concomitant with this acceptance is the commitment to advocating for human and civil rights for all people with neurological disabilities and differences, and by extension, all people with disabilities. The neurodiversity movement is therefore a part of the broader disability rights movement.

The neurodiversity movement is not a monolithic “club” with a specific set of beliefs to be adhered to, but has a general direction that moves away from the idea of “cures” or “normalization” for neurological disabilities and differences.

Although neurological differences are not always disabilities, being “pro-neurodiversity” is not the same as denying the fact of disability- differences are often indeed disabilities or are treated as such.

The neurodiversity movement is in line with such international documents as the UN Convention on the Rights of Persons with Disabilities and the Declaration on the Rights of Persons Belonging to National or Ethnic, Religious and Linguistic Minorities.

More:

--

Neurodiversity as a term simply refers to the fact that there is neurological diversity in the human race. The neurodiversity movement refers to people who advocate for acceptance, respect, inclusion in society and the like- civil, legal, and basic human rights, which are often denied to people with developmental, intellectual disabilities. Neurodiversity includes various disabilities, differences, and also includes neurologically typical people within its range.

Sometimes the neurodiversity movement is seen as "radical." Other civil rights movements have also been viewed as extremist, especially at their inception. Although comparisons with such social change projects as the Civil Rights Movement cannot be made item-for-item, some parallels can be drawn. As those movements grew, so did the numbers of people involved, and important social change was enacted. I am excited to see that more and more people of all neurological diversities are thinking about this important concept.

ARC of Virginia State Conference August 12-14, 2010

2010-07-21T11:07:00.000-07:00

http://www.thearcofva.org/state_convention/index.html

"A Life Like Yours: The Journey Continues"

I will be giving a presentation at the ARC of Virginia State Convention. I am very excited about this opportunity. My presentation will be on Communication Diversity and Advocacy: Awareness, Strategies, and Solutions.

The brochure with presentations and workshops is here:

http://www.thearcofva.org/docs/FINAL1011_arc_broc.pdf

Registration information is here:

http://www.thearcofva.org/docs/FINAL1011_conv_reg_sheet.pdf

Senate Confirms Ari Ne'eman's Appointment to National Council on Disability

2010-06-22T14:04:00.000-07:00

Yes, it's true. Finally. I knew he would be confirmed, just did not know when. ("Knew" meaning that I figured someone with Ne'eman's experience and ability would be confirmed eventually, that people would realize that Ari bring a wealth of resources to the NCD and should not be denied the appointment, not that I have any inside info- I don't.)
--

http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=117

The Autistic Self Advocacy Network would like to thank President Obama and the U.S. Senate for the nomination and confirmation of ASAN President Ari Ne'eman to serve as a member of the National Council on Disability (NCD). He will be the first Autistic person to serve as a member of NCD. An independent federal agency, NCD makes recommendations to the President and Congress on issues of importance to Americans with disabilities. To learn more about NCD, go to http://www.ncd.gov

--

Most recent article:

http://news.yahoo.com/s/usnw/20100624/pl_usnw/DC26125_1

National Council on Disability Introduces Eight New Board Members, New Chairman

Thu Jun 24, 9:38 am ET
WASHINGTON, June 24 –

WASHINGTON, June 24 /PRNewswire-USNewswire/ -- The National Council on Disability (NCD) is proud to introduce eight new Board Members who were nominated by President Barack Obama on December 17, 2009, confirmed by the U.S. Senate, and duly appointed as Members. President Obama has further designated Jonathan Young as Chairman. The new Members are: Jonathan Young (Chairman), Gary Blumenthal, Chester Finn, Sara Gelser, Ari Ne'eman, Dongwoo Joseph "Joe" Pak, Carol Jean Reynolds, and Fernando M. Torres-Gil. Individual biographies for each new Council Member are located at the end of this release. (click on the link to read the entire article)

--
The first article announcing the confirmation can be found on Disability Scoop:

http://www.disabilityscoop.com/2010/06/22/neeman-confirmation/9133/
Senate Confirms Controversial Autism Self-Advocate To National Disability Council
By Michelle Diament
June 22, 2010

After months of delay, the Senate unanimously confirmed Ari Ne’eman on Tuesday to become the first person with autism to serve on the National Council on Disability.

In December President Barack Obama nominated eight new members to the National Council on Disability, which makes recommendations to the president and Congress on disability issues. Early this year, all of the nominations were confirmed except that of Ne’eman, who has autism and is the founder of the Autistic Self-Advocacy Network.

The reason: one or more members of the Senate placed an anonymous hold on the nomination, preventing the full Senate from considering it.

Speculation swirled about the reason for the hold, with some suggesting that Ne’eman’s sometimes divisive views on autism could have been behind the delay. In particular, Ne’eman’s belief that autism should not be cured, but instead should be accepted and accommodated has drawn ire from parents of some individuals who are more adversely affected by the disorder.

As secretively as the hold was placed, however, it was lifted Tuesday morning when Senators voted unanimously to confirm the post along with at least 63 other nominations.

“I’m very pleased to have been confirmed by the U.S. Senate and I look forward to taking my oath as a member of the National Council on Disability and to get down to work,” Ne’eman told Disability Scoop.

The confirmations come after news earlier this week that Sen. Claire McCaskill, D-Mo., secured the votes to change the Senate rules to bar holds from being placed anonymously.

--

Another post on Kev Leitch's blog:

http://leftbrainrightbrain.co.uk/2010/06/ari-neeman-appointed-to-national-council-on-disability/

Comment on the confirmation on AS Parenting:

http://www.asparenting.com/2010/06/22/ari-neeman-confirmed/

Joint Letter on Cross-Disability Representation in Designating Medically Underserved Populations

2010-06-12T15:02:00.000-07:00

http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=116

June 9, 2010

To:

Kathleen Sebelius
Secretary
Health and Human Services

Mary Wakefield
Administrator
Health Resources and Services Administration

Pam Hyde, JD
Administrator
Substance Abuse and Mental Health Administration

We the undersigned disability advocacy groups urge you to include representation of the cross-disability community on the Negotiated Rulemaking Committee (NR) that will establish a comprehensive methodology and criteria for designation of “Medically Underserved Populations” (MUPS) and Primary Care Health Professions Shortage Areas. As a cross-disability community, we are stakeholders in the task you will undertake. However, we do not fit within the geographic census track data that has been used in the past to designate medically underserved populations. More than 54 million Americans with disabilities, including individuals with physical, mental health, sensory, environmental, cognitive, intellectual, and developmental disabilities experience inadequate health care because of a lack of primary care providers trained to treat them. In 2000, Healthy People 2010, cautioned that "as a potentially underserved group, people with disabilities would be expected to experience disadvantages in health and well-being compared with the general population.” They have and the data is startling.

Basic primary care is not a guarantee for anyone in the disability community. (Drainoni M, Lee-Hood E, Tobias C, et al., 2006) Three out of five people with serious mental illness die 25 years earlier than other individuals, from preventable, co-occurring chronic diseases, such as asthma, diabetes, cancer, heart disease and cardiopulmonary conditions. (Colton & Manderscheid, 2006; Manderscheid, Druss, & Freeman, 2007) Inaccessible medical equipment and lack of trained physicians, dentists, and other health professionals prevent individuals with disabilities from receiving the basic primary and preventive care others take for granted, such as getting weighed, preventative dental care, pelvic exams, x-rays, physical examinations, colonoscopies, and vision screenings. (Kirschner, Breslin, & Iezzoni, 2007; Chan, Doctor, MacLehose, et al. (1999); Manderscheid R., Druss B., & Freeman E . 2007).

People who are deaf or experience significant problems hearing report they were three times as likely to report fair or poor health compared with those without hearing impairments. (NCD, 2009). They have difficulty communicating with primary care providers who don’t want to pay interpreters or “bother” with a Telecommunication Device for the Deaf (TDD). Children with ADD may have difficulty getting examined by primary care providers untrained to treat them. People with significant vision loss are more likely to have heart disease and hypertension, experience a greater prevalence of obesity, and smoke more than the general population. (NCD, 2009). Further, people who are blind often miss out on the prevention handouts and booklets given to patients by primary care providers. Even providers report they have difficulty communicating with patients who are deaf or have severe visual impairments. (Bachman S., Vedrani, M., Drainoni, M., Tobias, C., & Maisels L., 2006)

27% of adults with major physical and sensory impairments are obese, compared with 19% among those without major impairments (Iezzoni, 2009). Research shows that individuals with intellectual disabilities must contact 50 physicians before they can find one trained to treat them. (Corbin, Holder, & Engstrom, 2005)

According to the National Council on Disability (NCD), 2009 report, The Current State of Health Care for People with Disabilities, “[p]eople with disabilities experience significant health disparities and barriers to health care, as compared with people who do not have disabilities.” Further, “[t]he absence of professional training on disability competency issues for health care practitioners is one of the most significant barriers preventing people with disabilities from receiving appropriate and effective health care.”

Members of the disability community experience a broad spectrum of functional limitations that result from their disabilities. Many experience secondary chronic conditions. As the recent draft “A Strategic Framework 2010-2015 – Optimum Health & Quality of Life for Individuals with Multiple Chronic Conditions “ by the HHS Working Group on Multiple Chronic Conditions” (May, 2010) reported, functional limitations can often complicate access to health care and interfere with self-management. The Institute of Medicine noted there is evidence that patients actively receiving care for one chronic condition may not receive care for other unrelated conditions.

The 1997 IOM report Enabling America bluntly stated that federal research effort in the area of disability was inadequate. On July 26, 2005, the U.S. Surgeon General issued a Call to Action warning that people with disabilities can lack equal access to health care. Though some funds are available for developmental and intellectual disabilities through the CDC, Maternal and Child Health, and the Developmental Disabilities Act, the 2007 IOM report, The Future of Disability in America states that research spending on disability is miniscule in relation to current and future needs. In this Report the IOM also warns that the number of people with disabilities is likely to rise, fueled by aging baby boomers.

We need to assure adequate numbers of primary care providers are trained to treat the population of people with disabilities; people with disabilities from across the disability community have access to adequate primary care; and funding is available for research and programs to end the health disparities people with disabilities face. With the passage of health care reform and the formation of the NR Committee to redefine “medically underserved populations,” HRSA can finally work to rectify the problem for all people with disabilities. Collectively, we are an underserved population and we are not adequately represented on the proposed NR Committee. We urge you to appoint someone to represent the cross-disability community, recognize people with disabilities as a constituency stakeholder within the definition of medically underserved populations, and include subject matter experts who represent the health care needs of the cross-disability community. Our groups are glad to serve as resources for HRSA. Thank you. (References below signatures.)

Sincerely

Access Living
ADAPT
ADAPT Montana
Alpha-1 Association
Alpha-1 Foundation
American Association of People With Disabilities
American Association on Health and Disability
Amputee Coalition of America
American Medical Rehabilitation Providers Association
American Network of Community Options and Resources
American Speech-Language-Hearing Association
The Arc of the United States
Association of Maternal & Child Health Programs
Autistic Self-Advocacy Network
Bazelon Center for Mental Health Law
Brain Injury Association of America
Bronx Independent Living Services
California Foundation Independent Living Centers
Center for Disability Rights (Rochester)
Center for Independence of the Disabled, NY.
Center for Self-Determination
Center for Women's Health Research at UNC
CHADD – Children and Adults with Attention-Deficit/Hyperactivity Disorder
COPD Foundation
Council for Exceptional Children
Disability Health Coalition
The Disability Network
Easter Seals
The Epilepsy Foundation
First Signs
Hearing Loss Association of America
Life Skills Institute and Life Skills, Inc
Little People of America
Mental Health America
National Association of County Behavioral Health and Developmental Disability Directors
National Association of Head Injury Administrators
National Association of Councils on Developmental Disabilities
Khmer Health Advocates, Inc.
National Coalition for Mental Health Recovery
National Council on Independent Living (NCIL)
National Down Syndrome Society
National Organization of Nurses with Disabilities
National Association of Private Special Education Centers
National Association of the Deaf
National Center for Environmental Health Strategies, Inc.
National Multiple Sclerosis Society
National Spinal Cord Injury Association
New York Association of Psychiatric Rehabilitation Services
Not Dead Yet
Physician-Parent Caregivers
Regional Center for Independent Living (Rochester, NY)
Rochester ADAPT
Spina Bifida Association
Statewide Independent Living Council of GA, Inc.
Stop CMV - The CMV Action Network
Substance Abuse Resources and Disabilities Issues Program (SARDI), Boonshoft School of Medicine
TASH
Tourette Syndrome Association
Tuberous Sclerosis Alliance
Master of Public Health Program, Tufts University School of Medicine
United Cerebral Palsy
United Spinal Association
Center on Independent Living, University of Kansas

References:
Bachman S., Vedrani, M., Drainoni, M., Tobias, C., Maisels L., , Provider Perceptions of Their Capacity to Offer Accessible Health Care for People With Disabilities J Disabil Policy Stud.; Winter 2006; 17, 3; 130-136
Chan L, Doctor JN., MacLehose RF., et al. (1999) Do Medicare patients with disabilities receive preventive services? Arch Phys Med Rehabil. 80:642-646
Colton CW., Manderscheid RW.. (2006, April). Congruencies in increased mortality rates, years of potential life lost, and causes of death among public mental health clients in eight states. Preventing Chronic Disease: Public Health Research, Practice and Policy. 3(2), 1-14. Available at www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=16539783.
Corbin S., Holder M., Engstrom K. (2005) Changing attitudes, changing the world: the health and health care of people with intellectual disabilities. Washington, D.C.: Special Olympics International.
Drainoni M, Lee-Hood E, Tobias C, Bachman S, Andrew J, Maisels L. (2006) Cross-disability experiences of barriers to health-care access. J Disabil Policy Stud. 17:101-115.
HHS Working Group on Multiple Chronic Conditions. (2010, May) Strategic Framework 2010-2015 – Optimum Health & Quality of Life for Individuals with Multiple Chronic Conditions. (Draft) Available online at:
Iezzoni, L.I., (2009, January 27) Testimony before the Senate Health, Education, Labor, and Pensions Committee, by Lisa I. Iezzoni, MD, Professor of Medicine, Harvard Medical School and Associate Director, Institute for Health Policy, Massachusetts General Hospital, Boston, MA.
Iezzoni LI, McCarthy EP, Davis RB, Siebens H. Mobility impairments and use of screening and preventive services. Am J Public Health. 2000;90:955-961.
Institute of Medicine, (1997) Enabling America, National Academies Press, Washington, DC
Institute of Medicine, (2007) The future of disability in America. National Academies Press, Washington, DC.
Kirschner K.L., Breslin, ML., Iezzoni, LI., (2007, March 14) Structural impairments that limit access to health care for patients with disabilities. JAMA,. 297:10:1121-1125
Manderscheid R., Druss B., Freeman E . (2007, August 15). Data to manage the mortality crisis: Recommendations to the Substance Abuse and Mental Health Services Administration. Washington, D.C.
National Council on Disability (NCD), (2009) The Current State of Health Care for People with Disabilities. Available online at: www.hhs.gov/ophs/initiatives/mcc/federal-register051410.pdf
US. Department of Health and Human Services. Health People 2010. 2nd ed. With Understanding and Improving Health, and Objectives for Improving Health. 2 Vols. Washington, DC: U.S. Government Printing Office, November 2000

AOL Health comments on Ari Ne'eman's Appointment to IACC

2010-05-01T09:33:00.000-07:00

I can't begin to say how pleased I am that Ari Ne'eman has been appointed to the Interagency Autism Coordinating Committee. My official attempt at being more than happy about the appointment is here:

http://www.aolhealth.com/2010/04/30/praise-for-secretary-sebelius-addition-to-federal-autism-panel/

ASAN's Comments at the April 30 IACC Meeting

2010-05-01T09:11:00.000-07:00

I gave these comments during the public comment session at the IACC meeting on April 30, 2010:

----

Thank you for the opportunity to comment. I am Paula Durbin-Westby. I am on the Board of Directors of the Autistic Self Advocacy Network. On behalf of ASAN, I would like to welcome the new members of the Interagency Autism Coordinating Committee.

The Autistic Self Advocacy Network is the leading organization run exclusively by individuals who are on the autism spectrum. We count among our supporters people on the autism spectrum, parents of children, teens and adults on the spectrum, educators, and practicing professionals.

For those new IACC members who are not aware of ASAN’s priorities for the Interagency Autism Coordinating Committee, I am going to list the priorities we have brought to the IACC over the past several years. I do have one item that I am crossing off my list- for now- “Add another autistic individual to the IACC,” one with a point of view emphasizing acceptance of disability and a proactive stance toward services and supports. It is also critical to have people who have a disability to be involved at all levels of policymaking. I am pleased that the IACC has realized the wisdom of adding additional autistic members, and also, as a committee with multiple members on the spectrum, I urge you to adopt strategies that steer away from the language of “burden” and “sadness” and move toward a more positive stance and appropriately objective language.

ASAN’s other priorities are:

Focus funding toward research and practices that will have practical benefit for people on the autism spectrum, our families, friends and communities.

Focus on services for people on the spectrum throughout the lifespan, including adults, underserved populations such as ethnic minorities, women on the spectrum, people who do not use language-based forms of communication, and others.

Redirect research attention toward developing functional communication systems, through developing and making accessible Alternative and Augmentative Communication systems and individualizing communication systems so that each autistic person can have the most accessible means of communicating. As an adjunct to this, make IACC meetings and materials accessible to people with a wide range of disabilities, both physical accommodations, communication differences, intellectual, cognitive, and developmental accommodations.

Focus away from a fixation on “causes” and “cures,” especially when these research focuses, on a variety of genetic/genomic differences, and various biomarkers for autism, have the potential to bring about a eugenics focus, or the selection out of the “gene pool”, of a certain subset of the American population. Keep eugenics out of autism research.

Ethical concerns must be kept foremost and the ethical concerns need not stop with the concern about how to transmit notions of “risk” during pregnancy. Ethical issues should also be addressed when researching medical and pharmaceutical treatments may, behavioral interventions, also often known by a simpler term- education-, that, without careful consideration of unintended consequences, be physically, psychologically, or emotionally harmful to the individuals receiving these treatments. All such research and subsequent practice must be rigorously monitored so that the health and well-being of the individual person on the autism spectrum is the first priority. In some cases, as Ari pointed out during the DSM-5 discussion, treatments and interventions will be contraindicated. In others, respectful and thoughtful strategies can be used. [note: There was a presentation by Susan Swedo of the DSM-5 Working Group earlier in the day]

Those researchers who work in close consultation with, and call on the expertise of, those of us living on the autism spectrum, in areas of development, interpretation, implementation, and evaluation, are the researchers who will be most likely to make advances that will directly impact the lives of autistic people in a positive way.

In closing, I am going to quote from Ari Ne’eman’s testimony at the November 30, 2007 IACC meeting. “We encourage this Committee to take the first steps towards shifting the main buzzword about autism from “cure” to “communication” and ultimately, to moving the dialogue about the autism spectrum to one of acceptance, inclusion and, above all, respect.”

Thank you.

"On the Spectrum": HealthLeaders Magazine

2010-04-26T10:26:00.000-07:00

I have a quote in this article about health care access:

http://www.healthleadersmedia.com/page-1/MAG-249290/On-the-Spectrum

Rick Johnson, for HealthLeaders Magazine, April 8, 2010

The lack of care coordination for those with autism is costly for patients and providers alike

(some intro material snipped to avoid copying the entirety of the article here. It's a good article, highlighting some of the issues that can come up in receiving health care.):

A perception is forming among those with autism, family caregivers, and medical professionals who specialize in autism spectrum disorders (or ASD) that the healthcare system as it is currently constructed far too often provides inadequate medical care for those on the autism spectrum. The tight-knit medical community specialized in treating those with ASD says delayed or denied healthcare not only compounds medical problems and prolongs suffering, but it could also escalate the healthcare costs associated with people on the autism spectrum.

"I have heard medical practitioners refer to us as 'autism patients,' whether or not the reason for coming in to see a healthcare provider has anything to do with autism," says Paula C. Durbin-Westby, a member of the board of directors for the Autistic Self Advocacy Network.

For years, the stigma of autism kept it from being discussed openly, but in the past two decades researchers have identified it as a neurological disorder, and advocacy groups have publicly promoted early detection, special education, and therapy. The precise causes of autism are not yet known, but some evidence suggests a combination of genetic and environmental influences. As a spectrum disorder, autism affects communication and social interaction in varying degrees; those with ASD often present with restrictive or repetitive behaviors and interests. Last December, the CDC released a report confirming that the prevalence of ASD in the United States is 1% of the population (or one in 110 children 8 years of age in 2006).

(more snipping)

Ari Ne'eman Appointment to NCD on Hold- Talking Points

2010-03-29T22:51:00.000-07:00

Some thoughts on writing to Senators and the media about the hold on Ari Ne’eman’s confirmation to the National Council on Disability. A hold has been placed on this confirmation by an anonymous Senator. If you would like to contact your Senator or respond to media articles, talking points and contact information are below:

--
1. Advocate *for* the confirmation. Focus comments on why Ari is a good choice for the NCD. We aren't trying to fight the opponents of the confirmation. Don’t give any legitimacy (or air-time) to people opposing the confirmation.

2. Think about briefly mentioning what this appointment means to you as an Autistic person or as a family member or as a person with a disability. Personalizing communications seems to be very effective and is always encouraged whenever I go to a lecture or read material about “how to influence your legislator” (or the media).

3. Bringing up Ari's work fighting against abuse (such as the recent restraint and seclusion legislation) and for services will be helpful. Ari’s views on focusing on acceptance and research that helps people are supported by Autistic people, people in the cross-disability community, and families. Some of Ari’s focuses, previous appointments, and other information that I think can be helpful are in his bio on the ASAN website. These could prove to be useful for Senators who are not familiar with Ari’s work:

http://www.autisticadvocacy.org/

4. Keeping the focus on what Ari has done underscores the work Ari would be doing with NCD; the NCD does not focus on cures or treatments for *any* disability, including autism, and has a scope that is broader than just autism-related issues. Ari has a proven track record of reaching out to and working with and for *all* people with disabilities.

http://www.ncd.gov/faqs.htm :

“NCD is an independent federal agency and is composed of 15 members appointed by the President, by and with the advice and consent of the Senate. It provides advice to the President, Congress, and executive branch agencies to promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, regardless of the nature or severity of the disability and to empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society.”

In conclusion, keep it positive, focused on why Ari should be confirmed in this appointment, and focus away from speculating about why a hold has been placed, or on opponents of the appointment.

--

Newsweek article about the hold on Ari’s confirmation:

http://blog.newsweek.com/blogs/thehumancondition/archive/2010/03/29/ari-ne-eman-and-the-controversy-over-an-autism-cure.aspx

New York Times article about the hold on Ari’s confirmation:

http://www.nytimes.com/2010/03/28/health/policy/28autism.html

New York Times letters to editor link:

http://www.nytimes.com/ref/membercenter/help/lettertoeditor.html

Please note: “Letters to the editor should only be sent to The Times, and not to other publications. We do not publish open letters or third-party letters. Letters for publication should be no longer than 150 words, must refer to an article that has appeared within the last seven days, and must include the writer's address and phone numbers. No attachments, please.”

Senate links. You just need to type in your state and you will get all Senators for your state:

http://www.senate.gov/general/contact_information/senators_cfm.cfm

or, http://www.congress.org/

Charlottesville Daily Progress: Budget hurts those with disabilities

2010-03-04T23:22:00.000-08:00

I wrote this letter to the editor, which appeared in the Charlottesville Daily Progress on March 4:

http://www2.dailyprogress.com/cdp/news/opinion/letters_to_the_editor/article/budget_hurts_those_with_disabilities/53053/

Balancing Virginia’s budget by eliminating services and programs for people with disabilities might look good on paper, but this balancing is done on the backs of Virginia’s most vulnerable citizens.

These proposals, which are a step in the wrong direction when it comes to human dignity and civil rights, come a time when most states are eliminating institutionalization as an option. Virginia, on the other hand, is choosing to continue to build and/or rebuild institutions, at a current cost of some $47 million, at the same time shutting the door on many of the services that would allow people with disabilities to remain in the community, with families and loved ones, and to be able to work and participate in community life.

Almost 6,000 people are on wait lists for Medicaid waivers that would allow them to receive services in the community rather than in institutions, a clear testimony to the fact that citizens of the commonwealth do not want institutionalization as their only option.
Under the proposed cuts, some people with disabilities who are able to work, utilizing personal assistant services, will no longer be able to work. People who are living in the community with assistance will have no choice but to go into institutions or nursing homes. Respite care could be slashed to almost nonexistent levels: The proposed cut from 720 hours to 240 hours maximum a year works out to less than an hour of respite care in a 24-hour day, for those fortunate enough to obtain it. Thousands of jobs for Virginians would be lost with the elimination of personal assistant services and other related jobs.

Virginia has responsibilities under the Americans with Disabilities Act and the 1999 Supreme Court decision Olmstead v. L.C., to provide services that ensure that people with disabilities are served in community settings. As the federal assistant attorney general for civil rights, Tom Perez, said in his recent installation speech: “Segregating people with disabilities in institutions is every bit as bad and illegal as segregating children of color in inferior schools.”

This sort of decision-making will force even more Virginia families into warehousing their loved ones, and into financial and personal disaster.

To balance the budget by forcing people with disabilities into institutions and poverty is a disgrace to Virginia.

Paula C. Durbin-Westby is coordinator for the Autistic Self Advocacy Network, Virginia Chapter.

Autism Women's Network radio show on ASAN and IACC Feb. 28

2010-02-27T08:45:00.000-08:00

I will be speaking on the Autism Women's Network radio show on Sunday Feb. 28 at 2 pm east coast time. Topic is ASAN and the IACC.

http://www.blogtalkradio.com/autism-womens-network/2010/02/28/paula-c-durbin-westby-asan-and-iacc

Disability Studies Quarterly Article

2010-02-22T13:03:00.000-08:00

I have an article here in the current issue of Disability Studies Quarterly:

Vol 30, No 1 (2010): Autism and the Concept of Neurodiversity

http://www.dsq-sds.org/

"Public Law 109-416 Is Not Just about Scientific Research": Speaking Truth to Power at Interagency Autism Coordinating Committee Meetings

http://www.dsq-sds.org/article/view/1070/1245

There are so many excellent and thoughtful articles here I should not just single out mine but then I'd be copying in a lot of URLS you can get by going to the main page. Contributors include:

Phil Smith, Christine Routel, Deborah Little, Katrina Arndt, Petra Kuppers, Jim Ferris, Emily Thornton Savarese, Ralph James Savarese, Melanie Yergeau, Stuart Murray, Bill Rocque, Joseph F Kras, Anne M. Donnellan, David A. Hill, Martha R. Leary, Melissa Park, Meredyth Goldberg Edelson, Sarah Birge, Kristina... See More Chew, Scott Michael Robertson, Ari Ne'eman, Paula C Durbin-Westby, Dawn Prince, Amanda Baggs, Nick Pentzell, DJ Savarese, Zosia Zaks, Valerie Paradiz, Jim Sinclair, Tito Rajarshi Mukhopadhyay, Chris Gabbard, Irene Rose, Bruce Mills, Katie Ellis.

Disability Studies Quarterly (DSQ) is the journal of the Society for Disability Studies (SDS). It is a multidisciplinary and international journal of interest to social scientists, scholars in the humanities, disability rights advocates, creative writers, and others concerned with the issues of people with disabilities. It represents the full range of methods, epistemologies, perspectives, and content that the multidisciplinary field of disability studies embraces. DSQ is committed to developing theoretical and practical knowledge about disability and to promoting the full and equal participation of persons with disabilities in society.

Virginia Balances Budget on Backs of People with Disabilities

2010-02-22T06:22:00.001-08:00

I wrote this on Friday. The budget proposals were released on Sunday. I like what I wrote, even though part of it is no longer relevant, so am posting it here. At the end of my post is a link to the Senate Finance Committee presentation, and some language from the presentation, with which I agree wholeheartedly.
--
Feb. 19, 2010

Governor McDonnell’s massive proposed budget cuts target programs and services for people with disabilities, with the chilling effect of targeting people with disabilities themselves. The severity of the cuts will spell disaster for many Virginians. Balancing the budget this way might look good on paper, but this balancing is done on the backs of Virginia’s most vulnerable citizens.

These further cuts to a budget that already proposes to eliminate critically needed services for people with disabilities and our families will eliminate services that help people with disabilities remain in the community, rather than being institutionalized. These proposals, which are a step in the wrong direction when it comes to human dignity and civil rights, come a time when most states are eliminating institutionalization as an option.

Virginia, on the other hand, is choosing to continue to build and/or rebuild institutions, at the same time shutting the door on many of the services that would allow people with disabilities to remain in the community, with our families and loved ones, and to be able to work and participate in community life.

Under the proposed cuts, some people with disabilities who are able to work, utilizing personal assistant services, will no longer be able to work. People who are living in the community with assistance will have no choice but to go into institutions or nursing homes. Up to 14,000 jobs for Virginians would be lost with the elimination of personal assistant services and other related jobs.

The McDonnell budget suggests that entirely eliminating Home and Community-Based Waivers, with their provisions for consumer-directed care and personal self-determination, would be somehow accounted for by the Developmental Disability and Intellectual Disability Waivers: “Individuals in need of these services will still be able to receive them through agency-directed services.” This short-sighted “fix” does not take into consideration that there are already almost 6000 people on the waiting list for those waivers. Many of the people already on the waiver list will be on it for so long that they will never receive services during their lifetimes. The likelihood that people who are currently served by HCBS waivers will be able to obtain services through these other waivers is almost nil.

The criteria for the HCBS waiver states that “The community-based care service under the waiver cannot be offered to individuals unless it can reasonably be expected that the individual would, without this service, enter a nursing facility,” which means that Governor McDonnell, and those who support this part of the budget proposal, are in effect choosing to force people into institutions.

In addition, the proposed budget intends to do away with several important agencies that are charged with planning for people with disabilities. These agencies include the Department for the Blind and Vision Impaired (DBVI), the Virginia Rehabilitation Center for the Blind and Vision Impaired, the Department for the Deaf and Hard of Hearing (DDHH), and the Virginia Board for People with Disabilities (VBPD). These agencies would be folded into the Department of Rehabilitative Services (DRS). Although DRS would assume the functions of these agencies, the positions of Director for each of the agencies would be eliminated. No replacement for the leadership position is proposed. Without adequate leadership and guidance, the service systems for the populations served by these agencies will be severely compromised. The budget proposal also calls for reducing DRS administrative costs, which will reduce the likelihood that consolidating agencies will be an effective way of serving Virginians with disabilities who have been served by these programs.

This sort of decisionmaking will force even more Virginia families into warehousing their loved ones, and into financial and personal disaster.

To balance the budget by forcing people with disabilities into institutions and poverty is a disgrace to the Commonwealth of Virginia.
--

http://sfc.virginia.gov/pdf/committee_meeting_presentations/2010/Subcommittee%20Reports/Complete%20Health%20and%20Human%20Resources.pdf

"Only last week did the Governor and his staff begin “discussing” his budget proposals with the Senate, including freezing health care services for 29,000 low-income children and pregnant women and removing waiver services for the elderly and disabled and eliminating access to inpatient mental health treatment at state facilities. These are proposals that we simply cannot accept. It is clear to me that the public would not endorse those proposals
and that is why our deliberations are meant to be aired well in advance of legislative action. It is our job as policymakers to fully understand the implications of what is being proposed."

URGENT: Virginia: ACT TO STOP DEEP CUTS IN DISABILITY SERVICES—CONTACT LEGISLATORS TODAY!

2010-02-19T06:32:00.000-08:00

From Doris Ray (ECNV)

URGENT—ACT TO STOP DEEP CUTS IN DISABILITY SERVICES—CONTACT LEGISLATORS TODAY!

YOU MUST ACT TODAY!! – In the next two days, the Virginia General Assembly’s money committees will make final decisions on the state budget for FY’2011-2012.

In December, outgoing Virginia Governor Timothy M. Kaine presented the General Assembly with a proposed state budget for the next two years. It contained significant cuts to Virginia’s Medicaid Home and Community-Based Waivers Program, including a yearlong freeze on admissions to 5 of the 7 waivers. It also included an 8% cut in the Department of Rehabilitative Services (DRS) Personal Assistance Services (PAS) Program. Additionally, Medicaid waiver provider reimbursements, including the salaries of personal assistants, respite workers, and companions would be cut by 5%.

As a result of YOUR ADVOCACY, state legislators were considering restoring some of these proposed cuts and offered their own budget amendments to do that.

Yesterday, Governor Robert F. McDonnell presented state legislators with a list of additional budget cuts that he would like the General Assembly to adopt. These proposed budget reductions would significantly cut, and in some cases, eliminate, services vital to the independence, self-sufficiency, and community integration of Virginians with disabilities! He said that these cuts are necessary to balance the state budget, but he also said that he would not entertain raising taxes or doing away with the personal property (car) tax relief program to raise revenues to prevent deep budget cuts.

Governor McDonnell’s recommendations for additional budget cuts include ---

· Elimination of consumer-directed personal assistance, respite and companion services from Virginia’s Medicaid Home and Community-Based (HCBS) Waivers. (A new cut proposed by Governor McDonnell, it is expected to reduce the budget by $62.9 million ) Individuals and families would no longer be able to hire and fire their own attendants. Instead, they would either have to use home health agencies, which are notoriously unreliable, or be forced into nursing homes or other institutions.

· Reduction of the financial eligibility threshold for Medicaid long term care services (both waivers and institutional placement) from 300% of the monthly Supplemental Security Income (SSI) check to 250% of SSI. Those with higher social security/retirement checks, for example, or those attempting to return to work, but who rely on waivers in order to afford personal assistance, would have their services curtailed. This budget recommendation notes that those in institutions will not be in jeopardy because they can simply spend-down in order to continue to receive Medicaid.

· Cuts of 25% in the Virginia Department of Rehabilitative Services (DRS) Personal Assistance Services (PAS) Program for FY 2011 and 50% in FY 2012. DRS PAS helps those not eligible for Medicaid waivers. A significant number of people would lose services, have to quit jobs, and could be forced into institutions.

· Additional reductions in state funding (beyond the 10% cut proposed in Governor Kaine’s budget) for adult in-home chore and companion services provided by local government departments of social services. These services provide an alternative for those needing help with activities of daily living, e.g., bathing, dressing and meal preparation, and who are not eligible for Medicaid waiver or DRS PAS services. The bad economy may force local governments to cut these services or impose waiting lists, especially with significant reductions in state funding.

· Elimination of the Department of the Blind and Vision Impaired, the Department for the Deaf and Hard of Hearing, and the Virginia Board for People with Disabilities. This recommendation was advanced without consultation with the consumers who will have their services impacted. Additionally, the DRS budget would be reduced by 5%.

These are only a few of the myriad of cuts in health and human services proposed by the McDonnell Administration.

In the next two days, the members of the Senate Finance and House Appropriations Committees will consider all of the recommendations regarding the biennium budget and issue their final recommendations on Sunday, February 21.

YOU MUST ACT NOW TO PREVENT DEVASTATING CUTS to PROGRAMS AND SERVICES THAT ARE VITAL TO VIRGINIANS WITH DISABILITIES!!

If YOU, or someone you care about, receives Medicaid waiver consumer-directed personal assistance, respite, or companion services, tell legislators how important these services are to YOU! Remind them that it cost far less to provide Medicaid home and community-based waiver services. In fact, data that Virginia’s Department of Medical Assistance Services (DMAS) provides to the federal government demonstrates that it costs Virginia three times more to keep people in nursing homes and other institutions rather than providing services in one’s own home.

Ask them to reject Governor McDonnell’s proposed cuts because they would force people with disabilities back into nursing homes and other institutions, costing the state more in Medicaid expenditures and in lost human potential! Tell them to restore funding to Medicaid waivers, DRS PAS, and adult in-home and companion services. Tell them it’s a good economic investment for the people served and for the personal assistants who consumers hire and employ. Tell them to restore cuts in attendant salaries also!

Senate Finance and House Appropriations members are making their decisions in the next two days! PLEASE ACT NOW BY CONTACTING THE FOLLOWING LEGISLATORS BY EMAIL OR BY PHONE --

Senator Charles Colgan, Chair of the Senate Finance Committee
district29@senate.virginia.gov, 804-698-7529

Senator Edward Houck, Chair of the Senate Finance Health and Human Resources Subcommittee
district17@senate.virginia.gov, 804-698-7517

Senator Janet Howell (D-Fx), Member Senate Finance Committee
district32@senate.virginia.gov 804-698-7532

Senator Mary Margaret Whipple (D-ARL/Fx), Member Senate Finance Committee
district31@senate.virginia.gov 804-698-7531

Senator Richard Saslaw (D-Fx), Member Senate Finance Committee and Senate Majority Leader
District35@senate.virginia.gov 804-698-7535

Delegate Lacey Putney, Chair of the House Appropriations Committee
DelLPutney@house.virginia.gov, 804-698-1019

Delegate Harvey Morgan, Chair of the House Appropriations Health and Human Resources Subcommittee
DelHMorgan@house.virginia.gov, 804-698-1098

Delegate Robert Brink (D-ARL), Member House Appropriations Committee
DelRBrink@house.virginia.gov 804-698-1048

Delegate Joe T. May (R-LOU), Member House Appropriations Committee
DelJMay@house.virginia.gov 804-698-1033

PLEASE ALSO CONTACT GOVERNOR MCDONNELL – Ask the governor to withdraw his recommendations to eliminate consumer-directed services in the Medicaid waivers. Remind him that Medicaid waiver services are more cost-effective than institutional placements and a good investment for Virginia. Let him know how important it is for consumers to be able to hire and supervise their own caregivers because it results in better quality assurance than using a home health agency. If you use DRS PAS services, let Governor McDonnell know how important those services are for you, and if DRS PAS services help you to stay employed and continue to pay taxes, tell him that!

HERE’S HOW TO CONTACT GOVERNOR MCDONNELL --
Governor Robert McDonnell
www.governor.virginia.gov/TheAdministration/contactGovernor.cfm, 804-786-2211

THANKS FOR TAKING TIME TO CONTACT THE GOVERNOR AND OUR LEGISLATORS!!

Virginia: Ask Governor McDonnell to Support Community for All

2010-02-13T20:46:00.000-08:00

This action alert is from the ARC of Virginia:

Ask Governor McDonnell to support Community for All

HELP GET 1,000 EMAILS TO GOVERNOR MCDONNELL BY MONDAY!

Click on the link here to send an email to the Governor:

http://capwiz.com/arcofva/issues/alert/?alertid=14685101

Critical budget decisions are being made this week. These decisions will determine the future of community-based services for Virginians with developmental disabilities and their families.

Will the waiting list for community services be reduced or will it continue to grow?

Will the community-based system stay intact or will it be dismantled by budget cuts?

Will Virginia commit to "Community for All" or will we rebuild institutions?

Hundreds of people with developmental disabilities, family members and concerned citizens are anticipated to attend the "mArcH for Rights" in Richmond on Monday morning, calling for for Virginia to eliminate the proposed cuts to community services and stop rebuilding institutions. Please join their voices.

Help us ensure the message of Community for All is heard loud and clear!

Our goal is to get 1,000 emails to Governor McDonnell by 12pm on Monday. The 5 minutes you give to take action will impact the lives of thousands.

Clicking on the link it will take you to the alert posted on the ARC of Virginia's website. Just scroll down and enter your name, email and address-then click "send message". Talking points are provided for your email to Governor McDonnell, but please take a minute to personalize your message (i.e. "I'm a family member on the waiver waiting list" ," I'm someone who is affected by cuts to community-based services", "I'm a friend/neighbor/collegue", etc.).

This alert is very time sensitive, Please respond as soon as possible and forward this email to everyone you know asking them to join you in the email campaign on behalf of "A Life Like Yours". If just 10 of your friends and family members respond-it will have a big impact.

-
Please help The Arc stand up for "A Life Like Yours"-email Governor McDonnell TODAY!

Virginia Autism Insurance Bills, February 2, 2010

2010-02-01T07:44:00.000-08:00

Virginia General Assembly Voting on Several Autism Insurance Bills, February 2, 2010.

I just have received notice from several organizations that “the” autism insurance bill will be voted on in the Virginia General Assembly’s House Commerce and Labor committee tomorrow, February 2, 2010.

There are actually 4 autism insurance-related bills in the Commerce and Labor Committee: HB 34, HB 303, HB 730, and HB 1367.

I will discuss only two of them in this article, HB 34 and HB 303.

HB 303’s age provisions are:

“…from the date of diagnosis until the individual completes nine years of age. If an individual who is being treated for autism spectrum disorder becomes ten years of age or older and continues to need treatment, this section does not preclude coverage of treatment and services….”

HB 34’s age provisions are:

“…shall provide coverage for the diagnosis and treatment of autism spectrum disorder in individuals under the age of 21, as provided in this section. In addition to the requirements imposed on health insurance issuers by § 38.2-3436, an insurer shall not terminate coverage, or refuse to deliver, issue, amend, adjust, or renew coverage, to an individual solely because the individual is diagnosed with one of the autism spectrum disorders or has received treatment for autism spectrum disorder…”

HB 34’s patrons are: Marshall, R.G., O'Bannon, Englin and Rust.

I don’t intend this to be a rant against Autism Speaks or any of the organizations that have copied and pasted the Autism Speaks information.

But, seriously, there are many autistic people, children, teens, and young adults, over the age of 9, who would be precluded from the provisions of HB 303. HB 34, on the other hand, provides an additional twelve years of mandated coverage.

Of course, it will be politically easier to get the first bill passed, as it does not mandate coverage for anyone 10 years or older, so that children and teens on the spectrum who do not get diagnosed until an older age (yes, that happens, with some children not receiving a diagnosis until they get to middle school and social and other difficulties become more obvious) will be left out. And so will their families, who will have to come up with money for any educational, speech or occupational therapy services out of pocket.

Since the bill is supposedly going to be voted on tomorrow, February 2, 2010, in the House Commerce and Labor COmmittee Subcommittee #1 at about 1:30. NOW IS THE TIME TO CONTACT YOUR LEGISLATOR.

If you think that autism insurance should cover individuals past the age of 9, please contact your legislator today and let him/her know you would prefer to see HB 34 passed rather than the weaker HB 303.
---

Members of the House Committee on Commerce and Labor are:

Kilgore (Chairman), Morgan, Purkey, Byron, Ware, R.L., Nixon, Hugo, Janis, Rust, Marshall, D.W., Cline, Miller, J.H., Merricks, Loupassi, Johnson, Joannou, Alexander, McClellan, Ward, Lewis, Tyler, McQuinn

Terry G. Kilgore, Chair:
(804) 698-1001
email: DelTKilgore@house.virginia.gov

Lee Ware, Jr. District 65:
(804) 698-1065
email: DelLWare@house.virginia.gov

Morgan, Harvey B. 98th District
Phone: (804) 698-1098
Fax: (804) 698-6798
Email: DelHMorgan@house.virginia.gov

Harry R. Purkey, 82nd District
Phone: (804) 698-1082
Fax: (804) 698-6782
Email: DelBPurkey@house.virginia.gov

Kathy J. Byron, 22nd District
Phone: (804) 698-1022
Fax: (804) 698-6722
Email: DelKByron@house.virginia.gov

Samuel A. Nixon, Jr. 27th District
Phone: (804) 698-1027
Fax: (804) 698-6727
Email: DelSNixon@house.virginia.gov

Timothy D. Hugo, 40th District
Phone: (804) 698-1040
Fax: (804) 698-6740
Email: DelTHugo@house.virginia.gov

William R. (Bill) Janis
Phone: (804) 698-1056
Fax: (804) 698-6756
Email: DelBJanis@house.virginia.gov

Thomas Davis Rust, 86th District
Phone: (804) 698-1086
Fax: (804) 698-6786
Email: DelTRust@house.virginia.gov

Daniel W. Marshall, III, 14th District
Phone: (804) 698-1014
Fax: (804) 698-6714
Email: DelDMarshall@house.virginia.gov

Benjamin L. Cline, 24th District
Phone: (804) 698-1024
Fax: (804) 698-6724
Email: DelBCline@house.virginia.gov

Jackson H. Miller, 50th District
Phone: (804) 698-1050
Fax: (804) 698-6750
Email: DelJMiller@house.virginia.gov

Donald W. Merricks, 16th District
Phone: (804) 698-1016
Fax: (804) 698-6716
Email: DelDMerricks@house.virginia.gov

G. Manoli Loupassi, 68th District
Phone: (804) 698-1068
Fax: (804) 698-6768
Email: DelMLoupassi@house.virginia.gov

Joseph P. Johnson, Jr., 4th District
Phone: (804) 698-1004
Fax: (804) 698-6704
Email: DelJJohnson@house.virginia.gov

Johnny S. Joannou, 79th District
Phone: (804) 698-1079
Fax: (804) 698-6779
(no email)

Kenneth C. Alexander, 89th District
Phone: (804) 698-1089
Fax: (804) 698-6789
Email: DelKAlexander@house.virginia.gov

Jennifer L. McClellan, 71st District
Phone: (804) 698-1071
Fax: (804) 698-6771
Email: DelJMcClellan@house.virginia.gov

Jeion A. Ward, 92nd District
Phone: (804) 698-1092
Fax: (804) 698-6792
Email: DelJWard@house.virginia.gov

Lynwood W. Lewis, Jr., 100th District
Phone: (804) 698-1000
Fax: (804) 698-6700
Email: DelLLewis@house.virginia.gov

Roslyn C. Tyler, 75th District
Phone: (804) 698-1075
Fax: (804) 698-6775
Email: DelRTyler@house.virginia.gov

Delores L. McQuinn, 70th District
Phone: (804) 698-1070
Fax: (804) 698-6770
Email: DelDMcQuinn@house.virginia.gov

URLs for the full text of each bill are here:

http://leg1.state.va.us/cgi-bin/legp504.exe?101+ful+HB303

A. Notwithstanding the provisions of § 38.2-3419, each insurer proposing to issue group accident and sickness insurance policies providing hospital, medical and surgical, or major medical coverage on an expense-incurred basis; each corporation providing group accident and sickness subscription contracts; and each health maintenance organization providing a health care plan for health care services shall, as provided in this section, provide coverage for the diagnosis of autism spectrum disorder and the treatment of autism spectrum disorder in individuals from the date of diagnosis until the individual completes nine years of age. If an individual who is being treated for autism spectrum disorder becomes ten years of age or older and continues to need treatment, this section does not preclude coverage of treatment and services.

http://leg1.state.va.us/cgi-bin/legp504.exe?101+ful+HB34
A. Notwithstanding the provisions of § 38.2-3419, each insurer proposing to issue group accident and sickness insurance policies providing hospital, medical and surgical, or major medical coverage on an expense-incurred basis; each corporation providing group accident and sickness subscription contracts; and each health maintenance organization providing a health care plan for health care services shall provide coverage for the diagnosis and treatment of autism spectrum disorder in individuals under the age of 21, as provided in this section. In addition to the requirements imposed on health insurance issuers by § 38.2-3436, an insurer shall not terminate coverage, or refuse to deliver, issue, amend, adjust, or renew coverage, to an individual solely because the individual is diagnosed with one of the autism spectrum disorders or has received treatment for autism spectrum disorder.

Thursday January 28: Partners in Policymaking Day at the Virginia General Assembly

2010-01-23T08:10:00.000-08:00

This important action alert is from Charlie House, Partners in Policymaking Class of 2009.
---

"An Assault on A Life Like Yours"

Partners in Policymaking Grads,

The introduced budget has proposed many devastating cuts to services for people with developmental disabilities! A summary of the proposed cuts are at the bottom of this email-they total over $300 million.

At the same time as this proposed dismantling of community-based system, the introduced budget proposes to continue plans to rebuild a NEW, $23 million, 75-bed, institution in Chesapeake, VA.

In sum, the proposed budget is a 40-year retreat from the Commonwealth's current policy of community-based supports.

Together, we must take action in large numbers and we need your help to do so.

The Arc of VA needs legislators to hear from self-advocates, family
members, providers and concerned citizens about the potential impact of these cuts/policies. They are asking local chapters, partner organizations, parent groups, etc to come at least one day of General Assembly to advocate for legislators to ELIMINATE these cuts and STOP rebuilding institutions.

The Arc has invited Partners in Policymaking graduates (and friends) to participate in a "A Life Like Yours" Day at the General Assembly next week, Thursday January 28th, to help deliver this message. Timing for this is critical, as legislators are making up their minds on these issues as we speak!

Our "A Life Like Yours" Day will begin with The Arc of VA providing a briefing for Partners in Policymaking graduates and guests on the proposed budget. The Arc staff will also provide us with talking points for visits with our legislators that morning/afternoon. They are telling us while it is important for us to learn the facts, it is even more important are YOUR personal stories!

Here is a schedule for the PIP Grad "A Life Like Yours" Day:

9:30am-10am: Meet and greet, catch up with old friends

10am-10:30am: The Arc of Virginia briefing on proposed budget

10:30-12pm: VISIT LEGISLATORS

12pm-1pm: Lunch in Cafeteria

1pm-2:30pm-VISIT LEGISLATORS

What to do before you come?

Please RSVP to Charlie House, charlie.fitness4u@gmail.com so we know how many packets to prepare.

Before you come, visit
http://conview.state.va.us/whosmy.nsf/main?openform
to find out who your legislator is and try to schedule an appointment before Thursday. Let them know you are a constituent. If you can't get an appointment, that is OK!
You can talk with the legislative assistant (which makes a big difference too!)

Thanks everyone for your support! I know these budget cuts are near and dear to each and everyone of your hearts. This is a short notice request, please do your best to support.

Sincerely,
Charlie House
charlie.fitness4u@gmail.com

Conference Call: All Families Supported

2010-01-22T14:43:00.000-08:00

On January 20, 2010 I participated in a conference call sponsored by SABE (Self Advocates Becoming Empowered), and Easter Seals.

The topic was “All Families Supported: Not Setting Up Separate Systems for People with Certain Kinds of Disabilities.”

A digital recording of our discussion will be available until midnight (eastern) February 20th by calling 800-642-1687 or 706-645-9291, conference ID # 50115853.

Here is the text of my comments:

I’m Paula Durbin-Westby. I’m on the Board of Directors of the Autistic Self Advocacy Network. I’m very interested in empowering people on the autism spectrum as well as people with other disabilities, and for us all to have the same civil and legal rights as other citizens in this country. I regularly attend meetings of the Interagency Autism Coordinating Committee, calling for a focus on services and supports research that will have a practical impact on our quality of life.

It is important to not set up separate systems for people with different disabilities, and also at times a tricky situation to NOT do that, inadvertently. I have heard presenters advocate for treating people with disabilities as PEOPLE foremost, and then turn around and single out autism for differential treatment. Because of our sometimes complex and often misunderstood educational, support, and physical needs, it’s sometimes easier for parents and “experts” to chart a separate course for us. But that can be true for each and every disability and there is a danger that in being separated into various groups, we will lose our effectiveness in advocating for our human and civil rights and those of our family members.

During the course of my learning about disability rights activism, I was first introduced to Autistic advocacy. Many of us are choosing to use the term Autistic with a capital A, rather than “person with autism”, to emphasize that we cannot be divided into the “OK, non-disabled, non-autistic part of ourselves” and the “bad (there always seems to be a value judgment implied that there is absolutely nothing good about autism) autistic part that must be gotten rid of or ignored or shoved aside yet which is central to who and what we are as human beings.” I don’t know that this is as strong a push for other disabilities and would welcome learning more about it, but that’s the one of the reasons behind us calling ourselves Autistic with a capital A and Autistic Community with capital A’s and C’s.

There is also the myth of a “parent-advocate and autistic self-advocate divide” as though we never have anything in common. There certainly is some truth, especially when self-advocates are arguing for the right to be ourselves, and some parents, experts and some self-advocates, want to “normalize” us, going beyond helping us be the best persons we can be. One of the guiding principles underlying the United Nations Convention on the Rights of Persons with Disabilities is respect for the right of children with disabilities to preserve their identities. Autistic children should not have to grow up constantly being told that our natural behaviors and body movements are wrong and that we cannot be accepted as we are.

At the same time, it is also true that many of us on the autism spectrum *are* parents ourselves, and some of us are parents of children who are also on the autism spectrum, and some of us are parents of children without disabilities, and some of us have both children with disabilities and ones without. There is not an easy way to divide us up. Our parenting beliefs and practices are not easily categorized.

ASAN has partnered with various cross-disability groups. We are on the steering committee of the Justice For All Action Network, a cross-disability organization that comes together to advocate on issues of interest to all people with disabilities. We regularly collaborate with cross-disability organizations, parents, other organizations, on issues ranging from employment to restraints and seclusion legislation.

And dividing us up, and I refer to everyone who is involved in disability rights advocacy in any way, can cause conflict and keep people apart, segregated into little islands of one type of disability or another, and it can have a very detrimental effect on advocating for the rights of ALL people with disabilities.

Interestingly I have met people who want to do the opposite, to ensure that, particularly, Autistic children and people do NOT spend time together, citing that “they will imitate each other” or “they will learn from each other,” the implication that we could only teach each other socially unacceptable “behaviors” (and autism is NOT just about behavior). It is very important to me to have time with my own people, people on the autism spectrum. I have learned amazing things from other autistics, including skills for navigating the world, advocacy skills, communication skills, without which I would not be on this call. I learned most of this from people with the same disability as me, including people who do not use traditional methods of communication, such as speech. I learned this not from “experts” and people who wanted me to learn how to do it their way, and my learning curve was phenomenal compared to all the years before.

Back to working together, Recently I spoke at a budget hearing in Virginia. Virginia is one of the few states that are still building bricks-and-mortar institutions rather than complying with the Olmstead decision and moving people into the community. We have a huge backlog of almost 6000 people waiting for Medicaid waivers that will allow them to live in the community rather than being institutionalized. Huge budget cuts including cutting out 1000 waivers yet at the same time spending $23 million to build a new institution. At the hearing were family members, self-advocates, leaders from various organizations, concerned citizens, all advocating for the right to live in community such as is enjoyed by people without disabilities. Despite the diversity of beliefs about autism, a large coalition of over 100 people came together to protest huge budget cuts that will directly impact us, our family members, and communities.

I communicate on a regular basis with parents of children on the autism spectrum, about challenges those parents face, about what their child is doing, sharing successes as well as more difficult times. I also communicate with many autistic people about specific issues such as employment, health care access, and other topics, although I tend to spend more time working on public policy than anything else.

IACC Comments January 19, 2010, with Disclaimer and Suggestions

2010-01-19T11:24:00.000-08:00

January 19, 2010

Thank you for this opportunity to comment on updating the Interagency Autism Coordinating Committee Strategic Plan. I am representing the Autistic Self Advocacy Network.

Much good work has been done to update the Strategic Plan for 2010.

[NOTE: I was sent an older version of the line edits for Question 3 on January 13. In the meantime the IACC reverted back to the original Aspirational Goal for Question 3, which was “ASPIRATIONAL GOAL: Causes of ASD will be discovered that inform prognosis and treatments and lead to prevention/preemption of the challenges and disabilities of ASD.”

The one I approved of was: ASPIRATIONAL GOAL: “Causes of ASD will be discovered that inform prognosis and produce effective treatments, services and supports and lead to improving the quality of life of all those that are affected by ASD.”

The IACC has reverted back to the first version which makes my comments about Question 3 irrelevant. In addition, I assume the rest of the general public did not have access to these line edits until this morning, precluding up-to-date commentary by anyone. I suggest moving the time frame for public comment back to the afternoon time slot so that members of the public have time to familiarize ourselves with changes that may have occurred between IACC meetings, which we are unable to access in a timely fashion.

In addition, the Strategic Plan for 2009 was put out a bit hastily, in order to get something out the door to incoming President Obama. It was suggested that the language from the Strategic Plan 2009 be kept because "you don't rewrite a Strategic Plan every year." While there is a lot of sense in this idea, the fact that adults on the autism spectrum were virtually ignored in many areas of the 2009 Plan merits some major changes rather than a digging in of heels in order to keep the Plan the same.

The much-improved version of the Aspirational Goal for Question 1, with a concern for diagnosis and assessment of adults on the spectrum, has reverted back to an Aspirational Goal that focuses only on children: CHILDREN AT RISK FOR ASD WILL BE IDENTIFIED THROUGH RELIABLE METHODS BEFORE ASD BEHAVIORAL CHARACTERISTICS FULLY MANIFEST. (the 2009 Plan had the age of 24 months as a goal; the current goal eliminates any mention of age and also deletes mention of interventions, since interventions are discussed elsewhere in the Plan.)]--

Because of some of the reversions to language and concepts found in the 2009 Strategic Plan, I need to reiterate several concerns from ASAN’s past commentary.

The aspirational goal that was generated by the recent Scientific Workshop’s Panel 1, for Question 1, “When Should I Be Concerned,” has been replaced with the original language. Although adults are mentioned elsewhere in the text of the plan, this Aspirational Goal should at least reflect some concern with the diagnosis and assessment of adults on the autism spectrum.

The sections in the Plan that address the ethics of communicating genetic risk should be amended to read “genetic and other risk,” in the light of recent developments in maternal autoantibody research.

Under “Research Opportunities” in Question 2, “Research on individuals with ASD who are nonverbal and /or cognitively impaired” should be qualified in some way to indicate that “nonverbal” is a contested concept, depending on how it is used. For example, some people on the autism spectrum communicate other than with spoken language, so it will be necessary to distinguish whether or not the person uses another communication system.

In Questions 5 and 6, there is a stated goal to investigate “… the use of medications to control challenging behaviors in people with ASD, particularly adults.” Do not assume that “we all know what this means.” “Challenging behaviors,” depending on who is getting to do the defining, could mean anything from hand flapping to serious threats to self and others. Any such study should rigorously examine the ethics of using medications to control harmless but socially stigmatizing behaviors.

Another research goal in this section brings up the same concern: “Conduct a study to evaluate current practices leading to the use of psychopharmaceutical medications and their effectiveness in the treatment of “co-morbid” (which should be changed to “co-occurring”) conditions or specific behavioral issues with adults across the autism spectrum.”

Without careful attention to ethical and legal concerns, this research goal could lead to what is in essence chemical restraint, which is one of the prohibited categories in the Preventing Harmful Restraint and Seclusion in Schools Act recently introduced by Representatives George Miller (D-CA) and Cathy McMorris-Rodgers (R-WA) and supported by organizations such as the Autistic Self Advocacy Network, the major teachers’ associations, the Association of University Centers on Disabilities, and many others.

The new proposed Question 7 needs to also be addressed carefully. Avoid autism registries that use personally identifying information without the informed consent of the person on the autism spectrum. If a person cannot (or cannot at that time) give informed consent, or is a child who cannot, or cannot yet give informed consent, every precaution should be taken to make sure that personally identifying information is not included. People who have been added to a registry during childhood should have the right to remove themselves from the registry upon attaining legal adulthood, should they choose to do so. All participation in autism registries should be on a voluntary basis.

To the statement “As more professionals become involved in autism research, there is a need for organized input from established scientists to provide guidance and expertise” should be added the need for organized input from adults on the autism spectrum, in order to assist researchers in making sure research is relevant to the needs of people on the autism spectrum as well as family members and the community.

I would like to close by repeating the call for additional members on the Interagency Autism Coordinating Committee, drawn from the community of autistic adults who have a perspective that focuses away from questionable cures and “elimination” of autism. Nothing About Us Without Us.

Paula C. Durbin-Westby
Board of Directors
The Autistic Self Advocacy Network

Restraint and Seclusion Legislation: National Call-In Day Thursday January 21

2010-01-19T09:12:00.000-08:00

http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=104

--

Dear Friends, Advocates and Community Members,

In one week, Congress will come back in session. The Autistic Self Advocacy Network (ASAN), in conjunction with the Alliance to Prevent Restraint, Aversive Interventions and Seclusion (APRAIS), is asking you to join us in a National Call-In Day on Thursday, January 21st to tell your members of Congress to support the Preventing Harmful Restraint and Seclusion in Schools Act (H.R. 4247/S.2860) introduced last month by Representatives George Miller (D-CA) and Cathy McMorris-Rodgers (R-WA) and Senator Chris Dodd (D-CT). This legislation would provide students with and without disabilities vital protections against abuse in schools. We are providing details on how to contact your members of Congress -- please distribute this announcement widely.

WHAT YOU CAN DO:

Please call this coming Thursday and encourage your friends, family and coworkers to participate by dialing the Capitol Switchboard at 202-224-3121 and asking for your Congressional representative to Co-Sponsor H.R. 4247, and your senators to Co-Sponsor S. 2860.

• To find out the names of your US Senators and Representative, click here (link to www.congress.org)
• Ask for the offices of your US Senators and Representative
• Ask to speak to the person working on education issues
• Identify yourself as a constituent and the organization that you represent (if any)

Message: “ I am calling to urge (Senator y) to cosponsor S.2860, legislation preventing harmful use of restraint and seclusion in schools.”

Message: “I am calling to urge (Representative z) to cosponsor HR 4247, legislation preventing harmful use of restraint and seclusion in schools.”

Thanks for your advocacy. Increasing congressional support for these bills will help move them through the legislative process towards enactment. Please call on January 21, 2010 and tell your friends and family to join you. If you are interested in doing more, please e-mail us at info@autisticadvocacy.org for information about how you can arrange a meeting with your representatives to explain why this bill is essential or visit www.tash.org/aprais to learn more.

Regards,
The Autistic Self Advocacy Network and the APRAIS Coalition

Virginia Budget Hearings at the General Assembly in Richmond VA

2010-01-12T13:10:00.000-08:00

January 11, 2010

I’m Paula Durbin-Westby. I am representing the Virginia chapter of the Autistic Self Advocacy Network, the leading autism advocacy organization whose leadership is made up of individuals who are on the autism spectrum.

First, a thank you to all the members of the General Assembly for your efforts to work with Governor Kaine’s budget constraints in this time of economic upheaval.

State policy for 40 years has called for Virginia to shift from institutions to community supports for persons with intellectual and developmental disabilities. Now, Virginia chooses to continue to segregate individuals with these disabilities in state institutions, and seems to be making a choice to reverse those gains which have been made over the past few decades.

In trying to explain institutions to my young son, he asked “Are they like big warehouses where people store stuff?” For many of us, both people with disabilities and our families, the answer is an unfortunate “Yes.”

People with disabilities and our families have repeatedly requested “A Life Like Yours,” and the statistics are there to show that there are cost-effective community-based solutions to institutionalization.

At a time when massive cuts to much-needed services are being proposed, building yet another bricks-and-mortar “solution” is unconscionable. Rather than investing in another “warehouse”, the State of Virginia should divert funding away from what is essentially a big construction project, and toward the human services, community services, medical and support services that people with disabilities, and our families and communities, need. 6000 people waiting for waivers? Respite care slashed from 720 hours per year to one third that amount? Or, less than an hour of respite in a 24-hour day. This sort of decisionmaking will force even more Virginia families into warehousing their loved ones, and into financial and personal disaster.

In addition, Virginia does have responsibilities under the Americans with Disabilities Act and the 1999 Supreme Court decision Olmstead v. L.C.

As Assistant Attorney General for Civil Rights, Tom Perez, said in his recent installation speech: "Segregating people with disabilities in institutions is every bit as bad and illegal as segregating children of color in inferior schools."

In the name of human dignity and civil rights for all people, including people with disabilities, the Autistic Self Advocacy Network calls on Virginia to honor its stated commitment to include Virginians with developmental and intellectual disabilities, in our own homes, our own communities, from which many of us are now excluded, and Virginia society as a whole.

Thank you for taking the time to consider this urgent matter.

Paula C. Durbin-Westby
Board of Directors
Autistic Self Advocacy Network

ARC of VA Info on VA Budget Hearings January, 2010

2010-01-05T11:34:00.000-08:00

http://www.arcofva.org/docs/budget_hearing_info.pdf

Information from the Arc of Virginia regarding tips and talking points for the upcoming VA budget hearings, to be held in various locations on January 7, 8, and 11.

Included in this link:

How to Prepare a Budget Hearing Statement
Tips for the Budget Hearing
Key Messages
Ideas for Sharing Your Story
Background Facts
ID Waiver Waiting List Count by CSB
Sample Talking Points
General Assembly Letter Writing and Visiting of Legislators
The ARC of VA 2010 Legislative Priorities
Directions to All Locations

Ari Ne'eman Appointed to National Council on Disability

2009-12-17T07:56:00.000-08:00

http://www.whitehouse.gov/the-press-office/president-obama-announces-more-key-administration-posts-121609

THE WHITE HOUSE

Office of the Press Secretary
_______________________________________________________________________________________FOR IMMEDIATE RELEASE

December 16, 2009

President Obama Announces More Key Administration Posts

WASHINGTON – Today, President Barack Obama announced his intent to nominate the following individuals to key administration posts: ·

Marie Collins Johns, Deputy Administrator, Small Business Administration· Gwendolyn E. Boyd, Member, Board of Trustees of the Barry Goldwater Scholarship and Excellence in Education Foundation· Jonathan M. Young, Chair, National Council on Disability· Carol Jean Reynolds, Member, National Council on Disability· Fernando Torres-Gil, Member, National Council on Disability· Chester Alonzo Finn, Member, National Council on Disability· Gary Blumenthal, Member, National Council on Disability· Sara Gelser, Member, National Council on Disability· Ari Ne'eman, Member, National Council on Disability· Dongwoo Joseph "Joe" Pak, Member, National Council on Disability

President Obama said, “I am grateful that these fine individuals have chosen to serve in my administration. They will bring a depth of experience and valued perspective to their roles, and I look forward to working with them in the months and years ahead.” President Obama announced today his intent to nominate the following individuals:

(I have snipped everyone's bio but Ari's. You can see them all on the link above.)

Ari Ne'eman, Nominee for Member, National Council on DisabilityAri Ne’eman is the Founding President of the Autistic Self-Advocacy Network, where he initiates and directs efforts to increase the representation of autistic individuals in public policy discussions. He is a leading advocate in the neurodiversity movement, frequently briefing policymakers and speaking publicly on disability and autism policy issues. Mr. Ne’eman also serves as Vice Chair of the New Jersey Adults with Autism Task Force, where he represents autistic adults in reviewing the state’s autism services. He also previously served on the New Jersey’s Special Education Review Commission, where he authored a minority report on the topic of aversives, restraint and seclusion. Mr. Ne’eman previously served as the Policy Workgroup Leader for the Youth Advisory Council to the National Council on Disability. He is a board member of TASH and the Autism National Committee. In 2008, he received the HSC Foundation “Advocates in Disability” Award. Mr. Ne’eman is currently an undergraduate at the University of Maryland-Baltimore County where he studies political science and expects to graduate in May 2010. In 2000, Mr. Ne’eman was diagnosed with Asperger’s Syndrome, an autism spectrum disorder.

This makes Ari the youngest presidential appointee in U.S. history.

Combating Autism Act Initiative (CAAI) meeting

2009-12-14T11:43:00.000-08:00

December 7, 2009

Combating Autism Act Initiative (CAAI) meeting, December 7-8 2009:

Charting the Course, Tracking Progress

http://www.aucd.org/template/event.cfm?event_id=1769&id=379&parent=379

Speaker bios:

http://www.aucd.org/docs/lend/itac/2009_caa_meeting/speaker_bios.pdf

PowerPoint presentations:

http://www.aucd.org/docs/lend/itac/2009_caa_meeting/plenaries_all.pdf

(My slides are from pages 34-35, and are the set I sent in *before* I made final alterations, which cut out a couple of slides and added some links, and cut some comments. But it’s basically the same. If I can figure out how to post the “real” slides here I will do so.)

When I give presentations, I read the entire thing, except for maybe a few words or phrases. Words in CAPS or italics are cues for me to emphasize a point. I left some of them in here for the same reason.
--

TEXT OF PRESENTATION:

[Slide 1:]

CAAI Annual Meeting:
Opportunities for Systems Change

[Slide 2:]

A bit about me:

I'm a member and on the Board of Directors of the Autistic Self Advocacy Network. I am a mom []. I am an organist and choir director. I am also an indexer of scholarly monographs. If you’re writing a book, I’ll give you both my business cards. ;)

For the next three slides I am going to talk about the Autistic Self Advocacy Network and some of the projects we are involved with.

The Autistic Self Advocacy Network seeks to advance the principles of the disability rights movement in the world of autism advocacy. Drawing on work done by the cross-disability community on such issues such as inclusive education, and community living supports, the Autistic Self Advocacy Network seeks to organize the community of Autistic adults and youth to add our concerns to the national conversation about us. In addition, the Autistic Self Advocacy Network seeks to advance the idea of neurological diversity as a legitimate range of human neurological variation. Autism is a disability, but we put forward the concept that the goal of autism advocacy should not be a world without Autistic people. Instead, it should be a world in which Autistic people enjoy the same access, rights and opportunities as all other citizens. We work in fields such as public policy, media representation, research and systems change. By autism spectrum I mean the entire spectrum, not just. ASAN’s work often finds us advocating for people with significant disabilities, not just limited to autism.

[Slide 3:]

AASPIRE is the Academic Autistic Spectrum Partnership in Research and Education. The Autistic Self Advocacy Network is the community-based partner for AASPIRE. Currently AASPIRE is conducting the AASPIRE Gateway Project, which is a collaboration between Oregon Health & Science University, University of Wisconsin-Madison, Portland State University, and the Autistic Self-Advocacy Network. This project aims to serve as a gateway to research that is committed to the following values:

• Inclusion: Studies have been developed in collaboration or consultation with individuals on the autistic spectrum.
• Respect: Strengths-based and respectful perspectives and language are used in all phases of research including reporting.
• Accessibility: Every attempt is made to create research participation materials that are physically and culturally accessible to all participants.
• Relevance: Research questions are relevant and useful to the autistic adult community.

www.aaspire.org

http://aaspireproject.org/projects/gateway.html

[Slide 4:]

The Partnering with People with Developmental Disabilities to Address Violence project is a CBPR collaboration between the Rural Institute in Montana, the Regional Resource Institute in Portland, Self Advocates Becoming Empowered (Montana and Oregon chapters), and the Autistic Self Advocacy Network (Portland chapter). ASAN was solicited for participation in order to facilitate involvement by the Autistic community in the project. The purpose of the project is to investigate interpersonal violence perpetrated against people with intellectual and developmental disabilities. This is a 3 year project funded by the Centers for Disease Control and Prevention. Information can be found on the AUCD website listed on the screen:

http://www.aucd.org/template/page.cfm?id=426

[Slide 5:]

Language use and systems change: This quote is from the Combating Autism Act Initiative site: “The purpose of the legislation is to amend the Public Health Service Act to combat autism through increased screening, intervention and education.”

Many autistic adults do not like the combat metaphor. We don’t believe there is some sort of "autism in essence" that can be separated from the individual person. After all, it is PEOPLE, and of concern, young CHILDREN, that are being talked about using warlike metaphors. What autism actually is, is a neurobiological disability and difference, affecting each person in a unique way even though there are commonalities in some of the core conditions, behaviors, and ways of perceiving the world. Although the legislation has that title, no one is required to REPEAT that usage in their own documents.

Parents are also turned off by "devastation" and similar language. I had one parent come into my house and literally THROW the information packet she got from the reputable clinic who diagnosed her daughter. The first sentence in the packet was "Parents are DEVASTATED when they learn of an autism diagnosis." She told me the rest of the information was of no use to her. These metaphors are not limited to one end of the spectrum; I have heard them being used about anyone and everyone on the autism spectrum [I could see a number of people nodding assent, through my blurry reading glasses.]

And one other, and this is from the Virginia Dept of Education: A flyer was available during "autism awareness month" that had the usual "Autism is more prevalent than pediatric cancer, Aids, and diabetes combined." and had NO actual information about autism, not even the 3 core conditions! My 7-year old son, who is not autistic, but who has me as a mom, knows more about autism than was conveyed in that flyer. Parents, and children on the spectrum, deserve better and more accurate information than that! In general, a more neutral terminology will foster better outcomes for autistic people by re-focusing priorities toward endeavors that are practical and useful throughout the lifespan, in areas of education, services, societal acceptance, and others.

[Slide 6:]

I was recently invited to be a panelist at the Interagency Autism Coordinating Committee's Scientific Workshop for updating the Strategic Plan for 2010. I was on the panel that focused on diagnosis and assessment.

The aspirational goal for the diagnosis/assessment section in the 2009 Plan read: " Children with or at risk for ASD will be identified by 24 months and receive appropriate interventions."

The panel, after much discussion, suggested a new aspirational goal: "Children at risk for ASD will be identified through reliable methods during the preclinical stage before ASD behavioral characteristics are present and people who have ASD will be detected at the point when ASD characteristics are observable, across the lifespan. "

This introduces the idea of diagnosis of older children, teens, and adults, limits the use of methods to *reliable* ones, and encourages a lifespan approach. This version, which may or may not be accepted by the IACC members, also leaves out the "intervention" piece, which will be addressed by other sections of the plan.

Early Identification is the "Learn the Signs" part of "Learn the Signs, Act Early." Diagnosis can be done reliably at certain ages; it is less clear whether some of the very early diagnoses are accurate or reliable, according to discussions I have been in with researchers, agency officials, and others.

When doing assessments, strengths as well as difficulties must be noted. Some of this assessment work, especially research on assessment methods, should be done in consultation with autistic adults.

[Slide 7:]

• What does “Act Early” mean?
• Assess strengths and difficulties
• Teach to strengths
• Address difficulties in a manner that is positive and respectful
• No stereotypes about what a person can or can’t achieve.

The whole concept of "intervention" is problematic because it suggests, by definition, that the autistic pattern of development is undesirable and that it must be altered and redirected into something else.

Acting early ought to mean determining, in a respectful and unbiased way, how a young child perceives the world and how the child learns best, and then designing an individualized program accordingly. And, as one adult on the spectrum pointed out to me, “that ought to be done for all children, not just the autistic ones”.

[Slide 8:]

• What does “Act early” NOT mean?
• “Let’s try something, anything!”
• NEED INPUT FROM AUTISTIC ADULTS
• Find out from us what works, what does not

Time is short so I am going to give only three examples:

Speech and language therapy, Occupational therapy and others: Use positive methods. Do not take away keyboards in order to force someone to talk. I know adults who refuse to talk due to fear that their PRIMARY means of communication, their keyboard, will be taken from them.

Restraints and seclusion are a big topic these days, what with the General Accounting Office report of last spring and subsequent legislation being introduced in Congress. Several studies done in the wake of the GAO report that were discussed in legislative hearings that I attended discovered that the primary reason that most restraints and seclusion are being done is for purposes of discipline or punishment. That is not what they are for, and is not acceptable. If you are in a field where there is a chance that restraints and seclusion are being used inappropriately you can advocate for an end to these practices. The Autistic Self Advocacy Network is a member of APRAIS, the Alliance to Prevent Restraints, Aversive Interventions and Seclusion, which advocates against the use of these techniques and condones the use of restraints ONLY in cases where there is a clear and direct threat to self or others.

[Slide 9 (picture of my dog looking up adoringly at me):]

This is my dog….[Note: people always like this slide; I got some laughs when they saw it. He’s my eye-contact research ambassador….] Eye contact often gets thrown into the "social skills" area, but it might need to be in the "communication" area since many of us either look at mouths in order to "lip-read" due to auditory processing difficulties, or, if we are visual thinkers, which not ALL of us are, we are quite literally "looking at what we are thinking." I can either look at your eyes or understand what you just said. Some people are also just uncomfortable with eye contact, or do not get much nonverbal information from it, so are not drawn to eyes. Recent comments on eye contact research include “Now we can retrain toddlers to look away from mouths and at eyes,” and this is an example of where the experience and knowledge of autistic adults can be invaluable and prevent something like children being less able to communicate because they are not being allowed to look at mouths to help them process spoken language.

[Slide 10:]

Adults on the autism spectrum, particularly young adults I talk with, who are more likely to have been identified at an early age, have very strong feelings about being "trained" to behave in ways that are not natural for them. People have talked about the high stress level that comes with that much pressure on them to "appear" or even to BE, "normal" or non-autistic. Often it's outwardly noticeable traits like hand-flapping, that are targeted. I have talked with or observed parents who were trying to train their child out of that happy kind of hand flapping that means real happiness. I did an experiment with one mom who told me that she was teaching her son not to flap. We determined that he flapped when he was excited or happy. I asked her if she smiled or laughed when excited or happy. Laughing and smiling, she said "Yes! That's what I do!" I said “The next time you are happy, DON’T SMILE! DON’T LAUGH! and to hire someone to assist her with this to make sure she didn't do it.

IF A BEHAVIOR DOES NOT HARM THE PERSON OR OTHERS OR DAMAGE PROPERTY, AND IS MERELY SOCIALLY STIGMATIZING, then that behavior is neutral. We need to educate people about autistic differences so that they will be less stigmatized. Professionals can ADVOCATE FOR acceptance of autistic differences.

[Slide 11:]

Note: This slide and discussion is not meant to disparage recovery research but to introduce a note of caution which we feel is important. The point is to engage thought and introduce what might be new and/or difficult ideas into the conversations and decision-making about autism.

• Recovery research:
• Co-occurring conditions still present
• Inhibition of “core features” vs. “losing” core features?
• Learning skills and developing, rather than “recovery.”

“Recovery” is a language choice in some ways, but an important one, given the climate of "I'll try anything to cure my autistic child!" “Recovery,” at least at this stage in research, is more of a metaphor than a fact. There is no evidence that they have recovered from AUTISM, especially given the admission that many, or most, of them, still have co-occuring conditions that are common to people on the autism spectrum. What may be occuring is that the person is learning skills, which does happen with people on the autism spectrum. We aren’t not developing, we just do it at a different pace and in different ways.

[Slide 12:]

Some key stakeholders in systems change efforts. None of these stakeholders can be left out if the most beneficial and sustainable systems change is desired.

Adults on the Autism Spectrum:

• Respectful language and concepts

• Respectful educational and other initiatives that are appropriately tailored to the individual

• Move away from institutionalization, including not just physical institutions but a sort of “institutional mindset” that people on the spectrum often encounter

• Person-centered planning and self-determination

[Slide 13:]

Quality of Life issues. All of these are crucial in the life of any person:

• Domains measured by World Health Organization Quality of Life Instrument:

• Social relationships and social support
• Physical health
• Mental health/psychological health
• Independence: mobility, activities of daily living, communication and work capacity
• Transportation access
• Vocation
• Recreation and leisure

[Slide 14:]

Children on the spectrum:

• Have the same right to self-actualization and life choices as non-disabled children
• Individualized programs that are more “supports” than “interventions.”
• Professionals: consult with autistic adults on both general principles and individual cases

[Slide 15:]

Stakeholders: Non-Autistic Parents

• Easily accessible non-biased information about autism.
• Website portal for information access
• Autistic adults involved in development of materials for parents (both for non-autistic and autistic parents)
• Service delivery infrastructure transparent. Parents should not have to wait years to find out details about Medicaid waivers, EDCD, etc.

Parents need to have access to a website or other portal, PREFERABLY ONE-STOP, with accurate, non-biased information. Parents of newly diagnosed children, whether those parents are on the autism spectrum or not, may need both practical and emotional support.

[Slide 16:]

Stakeholders: Parents on the Spectrum

• Parents on the autism spectrum, while not easily categorized:
• Are more tolerant of children’s differences
• Are an invaluable source of information and expertise on autism
• Are less tolerant of coercive “treatments”
• May need help navigating service systems
• May be subject to stereotypes about their parenting: Don’t assume poor parenting

[Slide 17:]

I took out the slide on professionals in the interests of time, but I do want to focus on one segment of the professional population and that is practitioners, researchers, etc. who are on the autism spectrum. These are, and could be, some of the “health care professionals from underrepresented populations” that are frequently referenced in the “Draft Evaluation Design Plans.”

They could be:

• SLPs
• DBPs
• OTs
• Special education teachers

They will interact with, or sometimes be officials, program directors, employees in AUCD-related programs. I know people in all these fields except DBPs, although I know some physicians on the spectrum. I won’t ask for a show of hands from the audience… if you are on the spectrum…. ;)

As part of my preparation for this presentation I sent out an informal set of questions to people on several of my listservs. I asked whether or not they were “out as autistic” at work, and what the impact of that was. I received quite a number of responses.

One group was NOT open about being autistic because of concerns about discrimination, job loss, not being taken seriously.

Another group, more people in fact, *are* open about being autistic. Of these many find that it’s a mixed blessing: they find it easier to work with children, clients, parents but harder to work with colleagues. Some say they have experienced discrimination.

One person, who is a counselor, strongly suggests that only autistics who are trained in a discipline really have the expertise to counsel or work with others in a professional fashion. When talking to non-professionals, you can and should talk to many adults on the spectrum, not just one or two, when learning about what we think about autism and what our experiences are.

People on the spectrum who work in these fields need to be encouraged and supported, with reasonable accommodations. Some of the responses I got were very exciting, about how colleagues seek them out for advice and expertise that they themselves lack. I strongly urge recruitment of individuals on the autism spectrum for health services professions.

[Slide 18:]

Delivery systems: I looked at a lot of sites linked to AUCD, and am picking out one or two just because I got interested in them, and have not had a chance to read everything yet.

The Ohio Autism Internet Modules should be available widely, to parents, professionals, people on the spectrum. I linked to them on Facebook.

Many states have exceptional programs such as this, but they are not linked to resources in other states.

Many gaps right now are being filled, if at all, by entrepreneurial parents and people on the autism spectrum who are starting their own programs at their own expense.

[Slide 19:]

To sum up, some ideas for Systems Change:

• Inclusion of autistic people in meaningful ways
• Culturally competent approach
• What is the “culture”? Autistic individuals, families, communities, carers, shared interests or patterns of characteristics/behaviors:
• Autreat example, ASAN example. [I asked if anyone in the room had heard of Autreat and no one indicated that they had so I gave a brief description.]

Including Autistic adults as colleagues, consultants, and collaborators in areas where we have been either denied access or simply not thought of, will go a long way toward building one type of systems change- the type that not only interfaces with a community of people with disabilities but engages us so that there is an interpenetration throughout that system giving rise to changes that can positively impact on all areas/aspects of the system. Any meaningful systems change initiative will reach its full potential only when people on the autism spectrum are included as full participants in all aspects of the process.

“Questions, comments?”

[Slide 20 is ASAN logo]

--
NOTE:

December 14, 2009. All new material here, this was not a part of the presentation but is an analysis I did afterwards.

I looked at references to “underrepresented populations” in the four Draft Evaluation documents and noticed the following:

References to recruiting and training practitioners from “underrepresented groups” (which could include practitioners on the autism spectrum) are found in the DBP and LEND documents:

http://www.aucd.org/docs/lend/itac/2009_caa_meeting/eval_plan_dbp_2009_1020.pdf (See pages 22, 24, 33, 44)

http://www.aucd.org/docs/lend/itac/2009_caa_meeting/eval_plan_lend_2009_1020.pdf (See pages 15, 22, 30-31, 43)

Interestingly, no mention is made of trainees in the state implementation Draft Evaluation document, and none is made in the Autism Intervention Research Program document:

http://www.aucd.org/docs/lend/itac/2009_caa_meeting/eval_plan_research_2009_1020.pdf

http://www.aucd.org/docs/lend/itac/2009_caa_meeting/eval_plan_state_2009_1020.pdf

An analysis of the four Draft Evaluation Design Plan documents gives the impression that while practitioners and LEND trainees might be drawn from “underrepresented groups,” which might include autistic (and other, such as racial, ethnic, and cultural minorities) trainees and practitioners, no one thought about recruiting and training researchers or state implementation grant staff from these groups. I wonder if the assumption is that these underrepresented groups could not possibly be researchers or grant staff, or that the effort required to expend to recruit into these kinds of programs would not be cost- or otherwise effective? I am not sure, but perhaps the next phase of these documents could include initiatives to reach out to underrepresented populations, including those on the autism spectrum.

OAR conference October 23-24, 2009

2009-11-18T10:20:00.000-08:00

I gave a presentation on Autistic Self-Advocacy: Communication Differences in the World of Disability Rights Advocacy

Here's my topic as stated in the conference literature:

http://www.researchautism.org/news/conference/speakers/abstracts.asp#Advocacy

Paula C. Durbin-Westby’s presentation focuses on communication differences and how those differences impact on the way advocacy work is undertaken. Autistic self-advocates are effective communicators, with differences and disabilities that must be taken into consideration in a variety of arenas. From conference calls, to presentations on a wide variety of topics, to panel discussions that can’t easily be scripted, autistic self-advocates employ a panoply of methods and both create and request accommodations that work to get the job done.

Here's my bio:

http://www.researchautism.org/news/conference/speakers/SpeakerBios.asp#Westby

I just now noticed that I am listed as being in "private practice" here. I'm not sure how ASAN fits into "private practice".... wish I had caught this a few months ago!

http://www.researchautism.org/news/conference/speakers/index.asp

--

I decided to make a number of changes to my presentation at the last minute, that being from 1-4 am. I added slides of things like the recent ASAN-PDX protests against Autism Speaks, among other things, to illustrate yet another type of communication that autistics might use to get a message across!

I am eternally grateful to Dora Raymaker, since she allowed me to use much material from her presentation to the IACC on May 4, which formed the backbone for my section on "What Is Communication?"

I talked about various situations that autistic self-advocates might find ourselves in and some ways of addressing communication differences. I covered technology, attitudinal barriers, and other important concerns.

And, although the slide show had 50 slides, I suddenly find myself at a loss for words. It could be because this is my 29th entry to my new blog in less than 24 hours. I will come back to this!

But I would like to put in this one paragraph, which is similar to what I say in almost all my full-length presentations. I like to let the audience know what some of the accommodations are that I am using right there in front of them, that they might not even be aware of. I have often heard people say that they were somewhat dismayed when I said I'd be reading my entire presentation, only to come up to me afterward or to write a comment that they were really surprised that I could pull that off!

--

For some of us, communication involves speech, but for others speech may impede or even prohibit our ability to communicate.

There are many ways to communicate without speech. Augmentative and Alternative Communication (AAC) devices and technology provide a wide range of options.

For those of us who do use speech, or use speech some of the time, AAC other accommodations may be necessary at times.

My experience with speaking is that it is often inadequate to the task at hand. I have trouble with the following: word finding, getting the right words out at the right time, entering a conversation, especially if there is more than one person, and sometimes even if there is only one other person. At times I can't put into words what I am thinking, since I often think visually. Sometimes I literally can not talk at all, but fortunately this has not happened in public [well, now it has, but that's what I wrote on October 23], and I always, ALWAYS write down EXACTLY what I am going to say, even to the point of throwing in a few "whatevers" or "you knows". I also use different fonts and color coding to remind me to put emphasis on certain words or phrases.

For me, WRITING IS MY MAIN MODE OF COMMUNICATION. I can communicate much more accurately, with more detail, information, nuance, etc. This presentation is just writing that I am speaking, for the most part. It might LOOK similar to a presentation you give, but the means of doing it are quite different. I throw out almost all the “rules of public speaking,” such as “memorize, “never READ a presentation,” “make eye contact!” and a host of others.

--

It was "interesting" to have to give testimony at the IACC on the morning of the 23rd, get back to the conference at some point, and give my presentation on the 24th.

Partners in Policymaking

2009-11-18T09:57:00.000-08:00

There is no way this blog would be complete without a post (or many posts, perhaps, if I get around to it) about Partners in Policymaking.

http://www.vaboard.org/policymaking.htm

Here is the Class of 2009, of which I am proud to be a graduate:

http://www.vaboard.org/policymaking.htm#class

I first learned about Partners when I did a yahoo group search for "Virginia" and "advocacy." After sifting through pages and pages of worthy things to advocate for, I was coming to the end of the list when I found Partners in Policymaking. I remember just sitting there looking at the page thinking "I can't believe this exists! This was made just for me!"

I contacted the VA Board for People with Disabilities and filled out forms, got recommendations, and finally our first class was on September 12-13, 2008.

September 12-13 2008
October 10-11 2008
November 14-15 2008
January 9-10 2009
February 6-7 2009
March 13-14 2009
April 3-4 2009
May 15-16 2009 - Graduation

I keep up with some of them on Facebook and sometimes see class members in places where I am not expecting them, like the OAR conference in DC...

We had an incredible array of presenters to teach our class about advocacy work. I am not going to list them all, at least not until I go through my file box and line them up so I don't leave anyone out. Most of them were fairly phenomenal, both in they way they presented material and in the depth and breadth of knowledge they had about various aspects of advocacy work.

I HIGHLY RECOMMEND TAKING PARTNERS IN POLICYMAKING if it is available in your state.

The national Partners in Policymaking site is here:

http://www.partnersinpolicymaking.com/

And, you can take online courses, if you can't get to a physical site, although I recommend taking classes "in person" if you can.

http://www.partnersinpolicymaking.com/online.html

I am saying this even though our particular classroom gave me sensory difficulties which I don't care to describe here, plus I would get "all peopled out" (which seemed to disappear after class when some of us would go to the sports bar in the hotel...)

Higher Education and Autism: Challenges, Solutions, and Success: April 29, 2009

2009-11-18T09:46:00.000-08:00

Higher Education and Autism: Challenges, Solutions, and Success

I gave this presentation at Germanna Community College in Locust Grove, VA. My audience was quite diverse, so I had to make sure to cover issues that would be of interest to: a general audience, students on the autism sepctrum, faculty and staff, counseling and disability services, and parents of students on the spectrum!

A video was made of the presentation, which is accessible via logging in and using a password, which I don't think I should post here. Anyone who is interested can contact me and I'll find out if you can have access.

Subsequently, I have been back to the Locust Grove campus, and also the the Fredericksburg campus, to talk with various people. One day I was on campus at the same time the new tutors were watching the video and learning about students. Suddenly it was realized that I was actually on campus so they asked me to come over to the tutoring meeting. One person commented as I entered the room, "Now we don't have to watch this!" I don't know if that was good or bad. ;)

Annoucements about the presentation are here. Advance apologies for large puzzle pieces:

http://germannanews.blogspot.com/2009/04/autism-in-higher-education-talk-set-for.html

http://www.germanna.edu/publications/documents/newsletters/04-2009newsletter.pdf

IACC Comments: November 10, 2009

2009-11-18T09:41:00.000-08:00

November 10, 2009

Thank you for this opportunity to comment on updating the IACC Strategic Plan. I am representing the Autistic Self Advocacy Network.

My comments on October 23 focused on ethical issues, concerns about the appropriateness of early intervention and associated research, permissions for acquisition of biological materials, and the IACC’s recommended budget being skewed severely in favor of research into “causes and prevention” rather than practical and appropriate interventions, such as improvements in educational interventions, services and supports.

I have had an opportunity, through the IACC Scientific Workshop Panel process, to make some language changes and suggestions that should apply throughout the Strategic Plan. Since I was on Panel 1, “When Should I Be Concerned?” I will use that section of the 2009 Strategic Plan as an example of changes ASAN would like to see incorporated throughout the entire 2010 Plan:

Many of these changes reflect either more accurate and useful terminology or more respectful language that does not introduce an undertone of disrespect, fatalism, or excess pathologizing of autism.

Anywhere the term “high risk” is used to characterize the likelihood of siblings also being on the autism spectrum, the language should be changed to just that: “high likelihood” rather than “high risk.”

“Abnormal” should be changed to “atypical,” as we have done for the Panel 1 final document.

Anywhere interventions are mentioned, the use of the qualifier “appropriate” should be inserted, addressing our community’s concerns about “intervention for the sake of intervention,” and especially in the light of the obvious disregard of and dismissal of autistic input into the research process to date.

Rather than “early warning signs,” we strongly suggest “early indicators,” which is more scientifically accurate and does not introduce negative value judgments into identifying indicators of autism or atypical development.

Instead of “symptoms,” “characteristics” and “conditions” are more appropriate, since autism is not a disease process but a neurobiological difference.

The use of the term, and concept of “severity,” is questionable for several reasons. First, “severity” is often contextual, over both time and other things like situation and location. What is being looked at when using the “severity” criterion is how “observable” the autistic characteristic is. Whether or not a characteristic is observable and to what degree does not necessarily correlate with other aspects of the person. Again, the focus needs to be on improving the quality of life and not on reducing autistic traits. For this reason we prefer the term “variability,” which indicates that both abilities and disabilities can be present in the same person, and that abilities and disabilities can change over time, whether permanently, or temporarily, in the presence of other factors, such as external environment. “Variability” refers to variability of autistic traits. Where the concept of “severity” is used it must be tempered with research into autistic strengths and also neutral, but autistic, characteristics.

I have made another language change, from “pathology” to “differences in neurobiology and cognition,” which is more specific and avoids the concept that all autistic differences are pathological. Many of them are not.

I have rewritten the first section of the Strategic Plan, with its three sub-questions, to read:

“When Should I Be Concerned?”
-“What are the Early Indicators of ASD?” (rather than “What are the early warning signs?”)
-“Are there typical characteristics that are part of an ASD diagnosis?” (I left that the same, since you already used “characteristics”, which is the preferred term.)
-How much variation is there in characteristics and pattern of abilities and disabilities (over time and depending on context)?”

In addition, undue focus should not be placed on “losing symptoms” of autism, without qualifying language indicating that the “loss” could be due to learning of skills, and certainly should not indicate, at this early stage in research, that these research subjects have become non-autistic. Especially in the light of reports that many of the subjects still retained co-occurring symptoms often found in autistics, such as OCD, anxiety, ADHD, etc., the public should not be encouraged to think that “loss of autistic symptoms” is “loss of autism.” I have changed the sentence in Panel 1’s draft to: “Finally, evidence is emerging that some children ‘lose’ explicit characteristics of ASD although it is not clear whether that loss of autistic characteristics is permanent throughout the lifespan, or whether it reflects “learning skills” rather than “losing characteristics.”

I have reformulated one of the Research Opportunities to: “Inclusion of bioethical and other ethical considerations into the diagnosis and screening process, including but not limited to consideration of the implications of genetic testing and detection of maternal antibodies. Maternal antibodies is an emerging area of concern for us which is reflected nowhere in the current Plan or suggested revisions.

NIMH and other grant-making institutions should not fund research that uses or promotes the use of restraints, aversives, and seclusion. There is a growing movement in society away from the use of these draconian measures, reflected in current legislative efforts to ban their use. Restraints, aversives and seclusion are used disproportionately against people with disabilities, including autism and other developmental, intellectual, and behavioral disabilities. In no case should researchers applying for grants to study restraints and aversives, either to further their use or to legitimize that use, be allowed access to federal funds, including funds from private/federal partnerships. Research that promotes restraint reduction and elimination should be funded as a high priority in order to keep autistic and people with other disabilities safe.

Research into communication differences must be given higher priority than it was given in the 2009 Strategic Plan. A mere mention of Picture Exchange Communication Systems is not enough, given that PECS does not work for everyone on the spectrum, nor does it address the needs of people who need communications technology and/or systems part-time, as a supplement to speech and/or writing, or the need for systems that are flexible enough to accommodate a wide variety of changing communication needs. It also does not necessarily address the needs of people who use non-language-based communication and/or non-symbol-based systems. Every person communicates in some form, but that communication is often not well-understood, and to this date, has been under researched. To separate autistics into “verbal” and “non-verbal” categories and leave it at that is to miss a critically important area for research, far surpassing in practical importance the finding of yet another “autism gene” or maternal antibody. The need for all autistics to communicate in ways that others can understand is crucial for our empowerment, life chances, access to basic needs, and for the chance to engage in reciprocal communication with people who do not easily access our various ways of communicating. What do autistics want? Ways of communicating that work for us and that allow us to communicate effectively with a wide range of others. What do parents of autistics want? Ways of communicating with us. A glance at comments online and in news media indicate that more parents are interested in being able to communicate with their autistic children (including adult offspring, who are by no means to be written off) than are interested in what gene/s are responsible for autism.

Finally, in order to accomplish the goal of achieving the best possible outcome for all people on the autism spectrum, autistic adults should be consulted and should participate in all levels and tasks of research on autism. Autistic adults with a perspective that focuses away from questionable cures and “elimination” of autism should be given a seat on the Interagency Autism Coordinating Committee. Nothing About Us Without Us.

Paula C. Durbin-Westby
Board of Directors
The Autistic Self Advocacy Network

I Am Autism Video: (Autism Speaks Gets It Wrong Again)

2009-11-18T09:38:00.000-08:00

http://asannorthernva.blogspot.com/2009/09/i-am-autism-video-autism-speaks-gets-it.html

I rarely post anything like an editorial, but here's my response to the "I Am Autism" video. This is from September 23, 2009.

--

Reminiscent of the failed Ransom Notes campaign, the latest video in the Autism Speaks arsenal uses a disembodied “voice of autism” that uses threat tactics, aimed at parents of autistic children.

“Voice” of autism: The “voice” speaks in a creepy, gloating, clipped tone, accompanied by the type of music reserved for scary movie scenes, saying repeatedly “I will” do (something particularly nasty) to “you,” the parent of a child on the autism spectrum.

The litany of threats listed by the “voice” give an air of criminality to “autism.” Some of the threats include robbery, pain, and “relishing desperation.” “You ignored me… and that was a mistake,” threatens the voice.

“I am autism. I have no interest in right or wrong.” “I know no morality.” How dare Autism Speaks say that we have no interest in right or wrong? Yes, I know the creators of this video would say “It is autism that is speaking, not autistic people.” Think again: You cannot separate autism from the autistic individual; you impute immorality to us by pretending to speak “our” language. It’s offensive and it is damaging to us.

“Voices” of parents: The second half of the film is the “voices” of parents and others who are “fighting back.” A list of people who will fight against “autism” follows. “Parents, grandparents, schoolteachers, pediatricians, friends”, etc. Everyone but anyone on the spectrum.

“We speak the only language that matters,” the voices of the “autism community” assert. The “community” envisioned here is a monolithic community of fighters-against-autism and not the real-life community of parents (including autistic parents), families, and communities, many of whom are disgusted by Autism Speaks’ dehumanizing tactics.

The voices of real autistic people, and of families who do not subscribe to the personification of autism, and therefore their family members, as something sinister and criminal, clearly do not matter to Autism Speaks.

United Nations: Near the end of this section we hear repeated by many voices: “We are the United Nations.” It’s pretty clear that Autism Speaks is trying to gain a foothold in creeping out people in other countries.

The United Nations, by showing this film, violates its own principles in the UN Convention on the Rights of Persons with Disabilities:

“As a change of perceptions is essential to improve the situation of persons with disabilities, ratifying countries are to combat stereotypes and prejudices and promote awareness of the capabilities of persons with disabilities (Article 8).”

Finally, a voice of a parent/autism community member asks: “Autism, are you listening?”

Yes we autistics and our families and friends are. We are listening to myths, negative stereotypes, the co-opting of our very real and human voices, being made, ironically enough, to say things that we would not say, threaten people in ways that we would not threaten them, and participate in our own stigmatization. And we will not rest until this sort of Ransom Notes-esque “autism awareness” campaign is thoroughly discredited.

Posted by ASAN Virginia

Virginia Special Education Comments: May 13 2009

2009-11-18T09:32:00.000-08:00

http://www.townhall.state.va.us/L/viewcomments.cfm?commentid=7034

May 13, 2009

The Autistic Self Advocacy Network, the leading organization run by and for autistic people rather than parents or providers, recommends the following:

The developmentally delayed category must conform, at a minimum, to the age range of three through nine, as detailed in 34 CFR Part 300.8(b). Many children will not be identified by the age of 5; additional time will ensure that children are correctly identified and avoid miscategorization, which can cause severe educational delays. We recommend keeping the current Virginia definition of developmental delay intact, with a definition of 2-5 for preschoolers and 6-9 for elementary-aged children. All language in the proposed regulations that restricts a child’s access to FAPE based on “age eligibility” should be removed.

Expand the definition of autism under 34 CFR 300.8(c)(1)(i) so that the full autism spectrum ranging from what is often called “classic autism,” Asperger Syndrome, PDD-NOS, Rett Syndrome, and Childhood Disintegrative Disorder are included. This will underscore that appropriate services should be provided to all children on the autism spectrum, and also avoid the pitfalls of mislabeling or denial of eligibility for FAPE.

Retain the specific learning disability of dyslexia in the form found in 34 CFR 300.8(10)(i). The proposed revision of the definition of dyslexia is too narrow and by its focus on phonological component of language disregards other components of dyslexia and may result in the denial of appropriate services.

Interpreting services are beneficial for children with disabilities other than deaf and hard-of-hearing. Children with Down Syndrome, apraxia, autism, and other disabilities can benefit from interpreting services. Eliminate disability-specific language so that a broad range of children who need these services can be included.

Retain the child study committee. Elimination of the child study committee may result in missed opportunities for the identification of children with disabilities, which will adversely affect subsequent eligibility for services at an appropriate age. This could set a child up for long-term difficulties in the school setting.

Retain all parental involvement as defined in the current special education regulations, including participation in Functional Behavioral Assessment, parental consent for the termination of services, and involvement in, determination of members of, and notification of changes to the IEP. Parents must also retain all rights outlined in 34 CFR 300.530(e)(1), (2) and (3): Discipline Procedures, in order to ensure that all pertinent information is received and considered, regarding a manifestation determination of a child’s disability.

Address disproportionality concerns by implementing Early Intervening Services found in 34 CFR Part 300.226: “An LEA may not use more than 15 percent of the amount the LEA receives under Part B of the Act for any fiscal year….to develop and implement coordinated, early intervening services…”

Work to address underdiagnosis of the autism spectrum in rural, minority and low-income communities by dedicating funding towards training and other identification measures through the state Child Find infrastructure.

www.autisticadvocacy.org

IACC Scientific Workshop September 30-October 1, 2009

2009-11-18T09:25:00.000-08:00

Here is the report I posted to the ASAN discussion list. Every time I think we are finally finished with Panel 1's tasks, there's another email from OARC (Office of Autism Research Coordination at NIMH). I have enjoyed the process so much that I really don't mind.
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Report: Interagency Autism Coordinating Committee (IACC) Scientific Workshop, September 30-October 1, 2009

I was invited by the Interagency Autism Coordinating Committee to participate in a Scientific Workshop, held on September 20-October 1, 2009.

The stated purpose of the Scientific Workshop was to cover the six questions in the strategic plan, focusing on 1) noted research gaps, 2) new opportunities for advancing research and knowledge about autism, and 3) the prioritization of short-term and long-term objectives in the plan.

The format of the meeting included presentations by invited panelists (clinicians, researchers, people on the autism spectrum and/or family members of people on the spectrum), as well as discussions by panelists, the public and members of the IACC. The panelists worked together before the Workshop to develop recommendations for the full IACC committee to consider at upcoming meetings.

I represented the Autistic Self Advocacy Network (ASAN), and advocated for changes in the Strategic Plan that would better serve autistics and our families, friends, and society.

The invitees were divided into five panels, to address the six areas of concern in the Strategic Plan (one panel took two of the sections). I was on Panel 1, “When Should I Be Concerned?” which dealt with diagnosis and assessment.

Members of Panel 1 were:

Geri Dawson- Chief Science Officer, Autism Speaks
Paula C. Durbin-Westby- Board of Directors, Autistic Self Advocacy Network
Deborah Fein- Professor, University of Connecticut Department of Psychology
Rebecca Landa- Director of the Center for Autism and Related Disorders
and of the REACH research program, Kennedy Krieger Institute
Catherine Lord- Director, University of Michigan Autism and Communication Disorders Center
Nancy Wiseman- founder and president of First Signs

My tasks for the Scientific Workshop included:

Participating in two pre-conference calls
(I also listened to 7 of the other conference calls)
Writing the PowerPoint presentation for Panel 1
Co-presenting Panel 1’s slide show at the Scientific Workshop
Participating in a discussion with other panelists
Participating in discussion with members of the public
Ongoing: finalizing any changes we want to make in documents to be sent to IACC

Pre-workshop conference calls:

A large part of my work took place before the actual Workshop convened. Two –pre-workshop conference calls took place, one on September 17, 2009 and the second on September 22, 2009. Panel 1 had two conference calls, both of which were open to the public. For our second conference call, one could call in and also view a webinar of the slides.

Conference call #1, September 17, 2009:

During Panel 1’s first conference call, we looked at gaps in the 2009 Strategic Plan, and began to identify areas where research opportunities exist. Geri Dawson sent an email with her ideas of where gaps lay and opportunities existed, and the panel discussed these and made suggestions. From our discussions we developed both a PowerPoint presentation for use at the Scientific Workshop and also a document (not yet in final form as of this writing) to send to the IACC with our panel’s recommendations.

We discussed changing the Aspirational Goal for the diagnosis section of the Strategic Plan. The current, 2009, Aspirational Goal is:

Children with or at risk for ASD will be identified by 24 months and receive appropriate interventions.

Some of the panelists wanted to revise the age downward, stating various specific ages. Also, the idea of preclinical diagnosis was introduced. I argued for the inclusion of older children, adolescents, and adults, and a move away from earlier and earlier diagnosis, unless that early diagnosis was not going to promote questionable experimental interventions that might do more harm than good. I insisted upon autistics being involved in all stages of research, including early diagnosis and also early intervention, in order to minimize egregious research practices. Even though our panel’s area of concern was not intervention, I commented that the reason for doing early diagnosis at all was to then implement some sort of treatment and intervention, since the assumption is often that diagnosis, especially early diagnosis, leads to attempts to change the course of development.

My comment: “The focus on early diagnosis for the purpose of prevention of autism is inappropriate on several levels: It assumes that all characteristics associated with autism are impairments, whereas some of our characteristics are neutral, or even valued by us and our families. “Prevention” of disabling conditions associated with autism must also take into consideration societal attitudes, some of which are promoted by the language of the Strategic Plan which uses phrases like “alarming trend,” and “costs to society of ASD” to describe what in fact are human beings.”

At the end of the first conference call, the aspirational goal included both preclinical diagnosis and post-childhood diagnosis, but was not in final form.

September 17-22, 2009: Between the calls:

Between the two conference calls, I rewrote large parts of the document, because the points sent out by Geri Dawson did not reflect a number of concerns I had. I was not able to address these concerns during the first conference call because I did not know that everyone else would agree to the template, and did not have enough time to process it “in real time” during the call due to auditory processing differences and the need to think about what the other panelists had said. I made many changes to the template we used for the first conference call. I also had agreed to write the slides for our panel’s presentation, so wrote slides that featured “alternatives a and b” for each of the points I wanted to change. I sent the revised document and the slides to the panelists via email just before the second conference call. These are the slides that were shown on the webinar, and were modified, so that people viewing could see the modifications, during the webinar.

Conference call #2, September 22, 2009:

The second conference call dealt mostly with my changes to the original document sent by Geri Dawson. Most of the panel participants believed we had come to consensus during the first call. I had made enough changes that, at first glance, it looked a bit daunting, and someone said, and was echoed by someone else, “I thought we had already come to consensus on this!” I pointed out that “we” had not. My comment was “So… you all came to consensus….” At that point, someone suggested that we go through all of my points one by one. I encouraged them by noting that I had not changed every point in the document, just a number of them.. I don’t believe that my approach was appreciated at first but I do think it worked out for the best.

First, we discussed the revised aspirational goal. At this point there were two versions. I explained that the Autistic Self-Advocacy Network does not recommend an emphasis on preclinical diagnosis because of the potential that reliable and prenatal detection could lead to selective abortion as a means to “prevent autism.” The other panelists argued strongly in favor of keeping the “preclinical” language. (I also recognize that some things that can be diagnosed “preclinically,” can be of benefit to a person, and not necessarily lead to unethical practices.)

While the idea of preclinical diagnosis was retained, we also added the very important modifier “reliable methods,” which I insisted on in order to counter any tendency to make claims based on other-than verifiable methods of diagnosis/identification. While this revised goal does not address all of my concerns, it is the compromise version and will be sent to the IACC as part of Panel 1’s recommendations to the IACC.

Children at risk for ASD will be identified through reliable methods during the preclinical stage before ASD behavioral characteristics are present and people who have ASD will be detected at the point when ASD characteristics are observable, across the lifespan.

I also wanted language introduced that would specifically mention groups other than children. For example, females were missing altogether from this section of the Strategic Plan. I argued for broadening the idea of diagnosis. The group came up with this statement concerning overall gaps in the Strategic Plan:

The need for early diagnosis in children is the main emphasis in the current plan; this should be broadened to include identification across the lifespan and in diverse groups (females, minorities).

Much of my commentary and suggested changes addressed poorly-worded or conceptually problematic research objectives.

One of the suggested short-term objectives I made changes to originally read:

“Develop and validate screening measures for detection of high-functioning ASD and Asperger Syndrome.”

I pointed out that “high-functioning” was both inaccurate, a stereotype, that autistics are not easily categorized, that the categories HF and LF are not useful and that thinking of us in those terms precludes the possibility of research questions that might be more useful to everyone on the spectrum. Additionally, I referred to the 1999 Anti-Stigma document/campaign by the Substance Abuse and Mental Health Services Administration that specifically eschews such terms as “slow functioning.” I stated during the conference call and also at the Scientific Workshop itself, that use of such terms should not appear in federal documentation such as the IACC Strategic Plan.

The compromise wording we ended up with is:

Develop and validate screening and diagnostic measures for detection of people with subtle characteristics of ASD.

This does not preclude any researcher from designing a study based on whatever criteria the researcher wants to study but avoids categorizing us into two groups based on “functioning level.”

Some language changes in the document are a word or two, yet I felt them to be of importance in shaping how researchers and the public, think of autism. For example, where the working document originally talked about “co-morbid” conditions, I suggested a change to “co-occurring.”

The first document put together by Geri Dawson did include an objective on ethics, but I felt that it was not worded strongly enough. The “panel minus me” approved of “Identify and consider ways of addressing the wide range of ethical and clinical issues related to the diagnosis, assessment, and communication of genetic, environmental, and clinical risk for autism.”

My objective was quite different in focus. For one thing I do not think that “identifying and considering” is very strong language, and the focus was on communication with parents following a diagnosis, whereas I see a larger area of ethical concern.

My suggestion for addressing ethical concerns was:

Fund at least one study to address ethical, legal, and social issues of early diagnosis and subsequent early intervention.

My rationale for this research objective was:

“Topics can include but are not limited to: effect of pharmacological agents on autistic individuals; effect of early behavioral conditioning on autistic developmental trajectory including unintended consequences; impact of research results on individuals, families, and/or society; researcher bias at every stage in the research process; bias associated with funding sources; priorities and values of people on the autism spectrum, families and society; perceptions of autism portrayed by researchers, clinicians, media, and advocacy organizations.”

The final version of the objective largely used the language that the other panelists agreed on, but added in some of my concern by using the phrase “as well as the social and clinical effects of diagnosis on the child and family.”
This still does not get at what I was trying to introduce into the Strategic Plan.

I brought this up again during the panel discussions at the Scientific Workshop because I wanted it to be heard by all the panelists and IACC members. I said at that time that although our document is intended as a consensus document, the Autistic Self Advocacy Network pushes for more specific and focused research into the topics above. The final wording was:

Identify and consider ways of addressing the wide range of ethical and clinical issues related to the diagnosis, assessment, and communication of genetic, environmental, and clinical risk for autism, as well as the social and clinical effects of diagnosis on the child and family. I am, as of October 7, 2009, asking for a change from “child” to “person” in the last sentence of this research objective, since not all people who will be diagnosed will be children.

--

In the research objective that discussed clinician’s communication with parents and family members, I inserted “respectful and positive” communication, recalling that some of the major clinics have literature they hand to parents of newly diagnosed children that start out, “Parents are devastated when their child is diagnosed with autism.” I noted that I know parents that initially rejected much of what the clinician subsequently had to say because they were offended by the negative language and approach.

An objective that I added is:

“Research the extent to which early diagnostic evaluation leads to appropriate early interventions.”

With reports of earlier and earlier diagnosis (whether reliable or not), and comments by researchers that (to take eye contact as one example) “Now we can retrain toddlers to look at eyes and not at mouths,” it is extremely important that research be done concurrently to determine whether or not interventions are indeed appropriate. We discussed this on the first call and I later added it to the slide show as an objective.

Another research objective I had suggested language changes for was:

“Determine the prevalence of and factors associated with loss or reduction of core behavioral features of ASD.”

I pointed out that behavior was not the only characteristic associated with autism. The rational section for this objective originally used the concept of “recovery,” which I stated had not been scientifically proven. I wanted to use “change” rather than “reduction” because not all changes are “reductions,” and also that gives room for researching positive (from various viewpoints, hopefully) changes in development, and also makes room for “no change at all,” and not attaching a negative value to behaviors that autistics and our supporters find to be either neutral or positive.

The objective was finally changed to this:

Determine the prevalence of and factors associated with changes in core features of ASD.

One of my objectives was rejected outright:

Accessible Outcomes Measure- oriented around more meaningful metrics than “reduction of autistic characteristics” (appropriate interventions)

The other panelists simply did not think that this objective belonged in the diagnosis section. “Create a measure for outcomes that is oriented around the quality of life of the individual on the autism spectrum, rather than the reduction of autistic traits, a less than meaningful concept based on a disputed value judgment. Such a measure should include having available an effective functional communication system, access to social relationships, cognitive capabilities, physical and mental health, community integration and inclusion and broader measures of social, vocational, medical and intellectual outcomes.” Although I tried to tie this to diagnosis, it did not sway the others to include it in our panel. I might have had more success with this initiative if I had been placed on the “treatment and intervention” panel, but I was not. This is something I will comment on at future IACC meetings because I think it is vitally important.

--

Some changes I would have liked to see, but that were not accommodated, were to change the whole concept of “risk of autism” to something more like “likelihood of autism,” to reduce that idea of autism as something that is always negative. While the concept of “risk” does not always carry negative connotations, I think that in discussing autism, it almost always does.

--

IACC Scientific Workshop: September 30-October 1, 2009:

The actual workshop took place over two days. 30 panelists were invited. Of the panelists, 3 were on the autism spectrum. One panelist could not make it to the conference due to illness so that left two of us (me and Lars Perner, who was on the “causes and prevention” panel).

Our panel was the first to present. Geri Dawson and I agreed, via phone conversation, to simply split up the presentation and each take half the slides. The presentation itself was mostly uneventful except when another panelist came up to me, concerned that I was not letting Geri have a turn. (The allocation of slides, with me doing slides 3-7 and her doing slides 8-12, as actually Geri Dawson’s idea.) Once we got that straightened out, we resumed the presentation.

During the discussion session, I tried to get in as many pro-neurodiversity points as I had time for. I commented not only on the research objectives I had introduced or modified but also on the “cure” focus in general, the unfortunate naming of the “Combating Autism Act,” a call for changes in language and focus, away from “prevention” and negative assessment of autism and toward a model that would allow for approaches that would genuinely assist autistics, our families, and society. I stressed the inclusion of autistics at every stage and aspect in research.

Each panelist was invited to comment on all the other panels, so I had the opportunity to stress a wide variety of topics, not limited to diagnosis alone.

I will include some of the most important comments I made here. I can’t put in every comment I made, as the workshop was two full days.

Language use:

(I made quite a few comments about language use in the Strategic Plan, by researchers, and in the media.)

The “cross-cutting themes” section of the Strategic Plan asserts: “Having sound research on the risk factors….for ASD ultimately may allow us to achieve the goal of prevention.” I asked who “us” is and what exactly was meant by “prevention”; it’s clearly not the goal of many autistics, our families, friends, and communities. Perhaps it’s a goal of “society” or “researchers”? Don’t assume that there is some sort of monolithic “us,” who wants to prevent autism. Many people do equate the prevention of autism with the prevention of autistic people, and if this is *not* the goal of some researchers, it needs to be made clear.

All references to “high” or “low” functioning should be kept out of the Strategic Plan. (The current plan has only several references to functioning at all but the term was used a lot during the conference calls and workshop).

Move away from the following (some of these are based on comments I actually heard during the conference and were not considered for inclusion in the Strategic Plan):

Change “disorder” to “disability,” which can also include “difference,” which encompasses both disabilities and strengths, throughout the spectrum and also within individuals.

Do not use “autism patient” in a generic way. I am autistic, but I’m not necessarily a patient (I did make a reference to the cough I was developing and said I’d be a patient if the cough kept up but that I still would not be an “autism patient”).

Editorializing about research findings, such as “Locked in a world of their own…” does not help anyone and is not really scientific.

Also, definitely do not use “deficiently built brain.” (!) We have “differently built brains,” if you want to talk about brain differences.

“I am focusing on language because it does have an effect on how people think about research, about the research they are conducting. If you think in terms of deficiency and limitations, you are limiting yourself as to the kinds of things you study, and perhaps missing a big chance to come up with something, a paradigm shift that could lead to a real research breakthrough, that might actually effective and will be helpful to people on the spectrum.” Here is an example: ‘Our findings lead us to the rather sad hypothesis that…’ A hypothesis is a hypothesis. It’s neither “sad” nor “happy.” (I got a *lot* of smiles of acknowledgement after that comment. Also, some researchers seemed genuinely interested in the idea that if they quit thinking of autism in terms of impairments only they might get further than by limiting their own thought processes. At least that’s what I got from the body language, which I can sort of decipher at times.)

Not “mental illness” (even though it’s in the DSM), but “developmental disability.”

The categories “nonverbal” and “verbal” might not be the most accurate way to think about communication differences. Also, one autistic pointed out during one of the conference calls that she finds it insulting.

Use “variability” rather than “high-functioning/low-functioning,” which, besides violating the Anti-Stigma policies of SAMSHA, also is potentially more useful as a research paradigm.

Move away from the idea of “forms” of autism, which is not scientifically proven. (There was a lot of talk of “sub-types” of autism by various panelists.)

Pharmacology:

Any medications should be developed with close consultation with people on the spectrum. Pharmaceuticals should not be developed merely for the purpose of eliminating characteristics that are socially stigmatizing, if there is no other purpose for them. Also, safe and effective pharmacological agents for people with epilepsy (not necessarily epilepsy-specific), should be addressed, since people with epilepsy are often excluded from drug trials. Any drug trials should address safety issues with this population since we do not want to introduce any greater risk to people with epilepsy.

In general:

The Autistic Self Advocacy Network does not support “normalization” to make autistics indistinguishable from “neurologically typical” people.

Autistics should be involved in all aspects of research, in all areas.

To address those who say I can’t “speak for” someone who appears much different from me, I point to the fact that no one can really “speak for” anyone. What I try to do is focus on the needs and concerns of autistic people all across the spectrum and advocate for supports, services, research that makes sense for us. Autism is a disability, which can be a difference for some people. I do NOT think that autism is NOT a disability; autism is a disability. If it were another disability, such as blindness, I don’t think people would be as likely to say “You’re not blind enough to give us any input on what it’s like to be blind,” (I got some nods and smiles of recognition from many panelists after I said this. I also had someone come up to me asserting I couldn’t speak for their family member because “you don’t think autism is a disability”).

Final tasks:

The panelists are still working on finalizing the slides we want to send to the IACC (as of October 7). We can make changes based on what we discussed during the Workshop. The slides will be given to the IACC Subcommittee on Planning the Strategic Plan. The Subcommittee will discuss all the panels and determine what is taken forward to the full committee. The Subcommittee will probably meet October 15, and the next full IACC meeting is October 23.

Paula C. Durbin-Westby
Board of Directors
The Autistic Self Advocacy Network

ASAN Virginia and Northern VA blogs

2009-11-18T09:21:00.000-08:00

I forgot to put these blogs into the chronology.

The ASAN-VA and ASAN-NOVA blogs are almost but not quite the same. Not knowing a lot about how search engines find things, I have tried to keep different articles "on top," depending on what I hope will be current.

I have only posted ASAN-related articles to the blogs, and intend to keep them that way, hence my new blog here where I can post some non-ASAN things that I have done.

http://asannorthernva.blogspot.com/

http://autisticselfadvocacynetwork-virginia.blogspot.com/

I should also post ASAN's main site:

http://www.autisticadvocacy.org/

IACC Comments: October 23, 2009

2009-11-18T09:18:00.000-08:00

October 23, 2009

http://www.youtube.com/watch?v=IMg0SwYOthw

Thank you for permitting me to address this meeting of the Interagency Autism Coordinating Committee. I am representing the Autistic Self Advocacy Network.

I appreciate having had the opportunity to represent ASAN at the recent Scientific Workshop. The meeting offered many opportunities to make changes as the Strategic Plan is updated for 2010.

Inclusion of an objective to study ethical issues related to “the assessment and communication of genetic, environmental, and clinical risk for autism” was one of the recommendations from Panel 1, the panel I participated in. This objective does not go far enough in that it only addresses assessment and communication of risk. It does not address other ethical issues which we believe to be important. Therefore we strongly urge an objective that would address ethical, legal, and social issues related to all aspects of research, not just the communication of risk, although that is a critical area, given recent developments in identifying prenatal risk factors.

Another area for concern about ethics is early intervention, as interventions are initiated at earlier and earlier ages . Ideas about what early interventions will work are generally based on assumptions of non-autistic people about what “the reasons for autistic behaviors” might be, with little to no input from autistic adults, who can inform and guide research.

A concerted effort is being made to increase acquisition of biological materials, such as skin fibroblasts, brains, and other tissue types. There is an ethical concern with collecting biologic samples from young children, who are not capable of giving permission. Potentially, children might not want to contribute biological material, if one of the purposes was for developing a prenatal test aimed at selecting people like themselves out of the gene pool. Although there are many reasons for collection of biological materials, this concern must be addressed. People on the autism spectrum who can communicate,* (see below) and people with other disabilities such as Down Syndrome, and their families, have advocated against, and continue to advocate against, such an aim.

In general, recommendations of many of the panelists to include adults in many sections of the Strategic Plan are a step in the right direction.

Although the IACC does not fund research, presumably it has some influence on research priorities, or it would not bother to come up with budget recommendations. Here are some figures from the 2009 Strategic Plan.

Recommended budget for diagnosis and assessment: $133,600,000
For biology and risk factor research, $179,000,000. For causes and prevention, $216,400,000 [almost 28% of the IACC recommended budget]. Treatment and intervention gets $190,100,000.

For “Where Can I Turn For Services?” Where, indeed? Not to the IACC recommended budget, which suggests a grand total of $25,330,000 [3.27%]. If research were really funded at the levels recommended by the IACC, that question becomes even more anxiety-provoking for autistics and our families. We will certainly need to turn to avenues other than the IACC for answers to questions about needed services and supports. Research into causes, biomarkers, prevention, etc. will not help people who are alive today and need evidence-based information about services and supports.

Recent research and initiatives in the United Kingdom can provide a model for services-oriented research and also research into adult issues. The National Health Service has released a study of autistic adults, indicating that prevalence of autism in adults in the UK is one in a hundred, similar to the recent figure here of 1 in 91 children. Interestingly, the NHS report avoids alarmist rhetoric and talk of “an epidemic of autism.” In addition, initiatives such as the “Don’t Write Me Off” employment campaign and “Supporting people with autism through adulthood” can make a real difference in the lives of autistics, especially and young people who are transitioning out of school settings. Sadly, the United States is falling behind on crucial issues related to services and lifespan issues and is failing autistic adults, families and communities.

Currently the Strategic Plan does not address communication differences and disabilities at all. This is a surprising omission, since one of the criteria for an autism diagnosis is communication disability. Although panel 4, on treatments and interventions, mentioned communication as an emerging tool, specific mention of communication research should be incorporated into the 2010 Strategic Plan.

*[Note: The comment "people on the spectrum who can communicate is NOT intended to mean that there are autistic people who cannot communicate. Everyone communicates. It's an error I wish I had caught before I delivered the comments, but I am posting the comments as I delivered them.]

*[I explained more carefully what I intended to say, in my November 10, 2009 IACC testimony:

Every person communicates in some form, but that communication is often not well-understood, and to this date, has been under researched. To separate autistics into “verbal” and “non-verbal” categories and leave it at that is to miss a critically important area for research, far surpassing in practical importance the finding of yet another “autism gene” or maternal antibody. The need for all autistics to communicate in ways that others can understand is crucial for our empowerment, life chances, access to basic needs, and for the chance to engage in reciprocal communication with people who do not easily access our various ways of communicating. What do autistics want? Ways of communicating that work for us and that allow us to communicate effectively with a wide range of others. What do parents of autistics want? Ways of communicating with us. A glance at comments online and in news media indicate that more parents are interested in being able to communicate with their autistic children (including adult offspring, who are by no means to be written off) than are interested in what gene/s are responsible for autism.]

Paula C. Durbin-Westby
Board of Directors
The Autistic Self Advocacy Network

Crusade against "Cassandra Affective Deprivation Disorder"

2009-11-18T09:12:00.000-08:00

July 20, 2009

This letter was sent to the Missouri Department of Mental Health. The article I complained about has been removed.

I also started an "Anti-Cassandra" blog, which has just been re-opened. Submissions are being accepted for anti-Cassandra articles. It's here:

http://cassandra-affective-disorder-woo.blogspot.com/

-
Hello,

I am writing in reference to an article linked to the Missouri Department of Mental Health, Developmental Disabilities section of your website. Your website links to “Network of Care,” which has a library that features, among other items, the following:

"Representing Cassandra in Matrimonial Law: Asperger's Syndrome in Separation and Divorce
By Sheila Jennings Linehan B.A., LL.B., J.D. and FAAAS Inc.

The article asserts that:

“The Cassandra concept is particularly relevant for the case of an AS partner with children. She or he (we will use "she" in this context, because AS is at this present time, recognized in more males than females) will come to the law office and correctly inform her attorney that there are safety issues regarding the parent with AS. However, she will be viewed as an alarmist or, even worse, a parent with parental alienation issues. Thus, though she accurately predicts future harm to her children, she becomes the party labeled as abnormal. British family law attorneys Hackett and Henderson observe in their recent Family Law article that it is, ironically, the non-AS mother who will be incorrectly identified as the problem. When the predicted child safety incidents occur, they are rationalized, normalized and "written off." This is the result of professionals failing to identify the overall pattern and diagnosis.”

This language is disturbing for several reasons. First, there is the fact that no “Cassandra concept” has been developed, recognized or studied by professionals or researchers. Second, it applies one-way, and only to people who are on the autism spectrum, specifically with an Asperger’s diagnosis. There is no mention of a person who is on the autism spectrum and married to a spouse who is a compulsive gambler or violent alcoholic, to name just two examples.

The article characterizes most, if not all, parents with AS as poor parents who jeopardize the safety of their child.
The growing problem of discrimination against adults with disabilities has been recognized by at least one state legislature, that of Maryland, which recently passed Senate Bill 613 and House Bill 689 to protect parents with disabilities from unwarranted discrimination:

“Establishing that, in making a disposition on a child in need of assistance (CINA) petition, a disability of the child's parent, guardian, or custodian is relevant only to the extent that the court finds, based on recorded evidence, that the disability affects the ability of the parent, guardian, or custodian to care for and attend properly to the child and the child's needs; prohibiting a specified department, individual, or agency from withholding consent to an adoption solely because a prospective parent has a disability; etc."

http://mlis.state.md.us/2009rs/billfile/sb0613.htm

Linehan has written other articles that urge differential treatment of partners with AS in her “High-Conflict and Asperger’s Syndrome” where she maintains that:

“Where there is lengthy conflict related to separation, and where one party has Asperger's Syndrome, I submit here that the source of post-separation conflict is likely to be found predominantly in the problems generated by the neurological disability. This view is a radical departure from the literature on high conflict separation which assumes that both parties are the source of post separation conflict.” This assertion suggests that professionals abandon their codes of ethics that demand equal consideration of both parties to a conflict.
[link removed from Blogger so as to not promote this discriminatory concept. You can look it up for yourself.]

Please consider removing this article from your site both for its promotion of discrimination against parents with developmental disabilities, and for its lack of professionalism in asserting that there is such a “disorder” as “Cassandra Phenomenon”. The Network of Care seems to have this article linked on all its individual regional sites. I have tried repeatedly to get in touch with them but do not receive an answer.

Regards,

--
Paula C. Durbin-Westby

IACC Comments: May 4, 2009

2009-11-18T09:07:00.000-08:00

May 4, 2009

Augmentative and Alternative Communication:

It is gratifying to see that the IACC is addressing the critical issue of Augmentative and Alternative Communication.

Now it is time to allocated funding to AAC research. Including a presentation about AAC is an important but preliminary step.

Since communication difficulties are experienced by many, if not most, people on the autism spectrum, funding research in this area should be a high priority. Advances in communication technology, and the development of AAC options that are affordable, will have a practical application to the lives of people on the autism spectrum, throughout the entire lifespan.

Because of the extreme disparity between services/quality of life funding and the funding of basic research, funding for AAC should be diverted from the millions of dollars allocated to genetic and treatment research and NOT drawn from the already minimal funding for service-related research.

Community-Based Participatory Research:

I recommend using a community-based participatory research model for AAC and other research. Autistic adults must be included as collaborators in research, for both practical and ethical reasons. The community-based participatory research paradigm is one model; others may be developed and utilized.

One likely outcome of including people on the autism spectrum as collaborators and co-researchers is that the research will be made more relevant to the lives of people on the autism spectrum, including not only adults but children as well.

One example from a current research area is that of eye contact research. It has been recently discovered by Klin et al., that autistic children look at mouths more than at eyes. Although this is an exciting new discovery for researchers and others, it is not necessarily news to people on the autism spectrum, who recognize the need to attend to both visual and auditory cues when processing information.

Researchers should take into consideration the numerous self-reports of people on the autism spectrum about the necessity of looking at people’s mouths in order to compensate for auditory processing difficulties, among other reasons.

Studies have already been undertaken that show that typically-developing children also use multi-modal perception to process their experiences.

It has been suggested that some sort of retraining could be done to direct children to not look at mouths but at eyes. The theory is that by looking at mouths children, and presumably adults who do not make much eye contact, are missing important social cues.

While it is critical to understand the underlying mechanisms for human communications and processes, the design and application of scientific theories, especially when young children are involved, should have participation, input, and oversight from people on the autism spectrum. Retraining autistic children/adults to look at eyes, because that is what neurologically typical people do, may not be of benefit to those who are on the autism spectrum.

Including co-researchers who are on the autism spectrum can positively inform research so that time and taxpayer money are not wasted and so that studies involving autistic children as subjects do not cause additional difficulties when children are retrained to look away from mouths and possibly lose a significant visual method of accessing receptive communication. Audio-visual synchronies are important not just because they are early indicators of autism but because they are a critical component in how we make sense of communication inputs.

Autistic self-advocate organization as public member:

The time has come for the Interagency Autism Coordinating Committee to include representation from autistic self-advocacy organizations such as the Autistic Self Advocacy Network. Autistic self-advocacy organizations are an increasingly recognized stakeholder in autism policymaking and should not be purposely excluded from the Committee that makes decisions about federal funding for research. Adding a public member from an autistic self-advocate organization will begin to redress the existing imbalance in parity, and add a much-needed dimension of focus on research and policy that will benefit people on the autism spectrum throughout the lifespan.

This will enable research into AAC to move from the “promising practice” realm to a best-practice reality.

REFERENCES:

1. R000239930- Benefits of Averting Gaze and Cues to Comprehension. Doherty-Sneddon, Gwyneth.

http://www.esrcsocietytoday.ac.uk/ESRCInfoCentre/Plain_English_Summaries/knowledge_communication_learning/knowledge/index405.aspx?ComponentId=9673&SourcePageId=11764

2. Read My Lips: Using Multiple Senses in Speech Perception. Rosenblum, Lawrence D. Current Directions in Psychological Science

http://www.eurekalert.org/pub_releases/2009-02/afps-rml021109.php

3. YouTube video on multi-modal processing:

http://www.youtube.com/watch?v=jtsfidRq2tw

-Paula C. Durbin-Westby

(IACC minutes here: http://iacc.hhs.gov/events/2009/full-committee-mtg-minutes-may4.shtml )

IACC Comments: February 4, 2009

2009-11-18T08:57:00.000-08:00

In addition to the comments, copied in below, I have posted a link to the IACC minutes for that meeting. After I gave my presentation, there was talk of having a presentation on AAC at a future IACC meeting. Subsequently, Dora Raymaker and Joanne Cafeiro presented on AAC at the May 4, 2009 meeting.

http://iacc.hhs.gov/events/2009/full-committee-mtg-minutes-feb4.shtml

--

The Autistic Self-Advocacy Network would like to take this opportunity to thank members of the Interagency Autism Coordinating Committee for inviting us to present on Ethical Concerns in Autism Research this past November. We applaud the effort the IACC has made so far in developing a Strategic Plan for autism research.

Much remains to be done.

Funding allocation has been skewed in the direction of finding causes and cures. For example, $75 million dollars have been allocated toward just one research initiative, that of identifying animal and cell models in the attempt to find a “cure” for autism. Compare this with a mere $1.6 million for the entire services research area.

Public Law 109-416 has a broader mandate than research into causes and cures. Although the short title, the “Combating Autism Act,” was geared toward obtaining congressional and public support for the act, it is time to take a step back and seriously think about what funding priorities mean to people who are on the autism spectrum, their families and communities. The research agenda should respect the wishes of autistic individuals and their families, many of whom have written in response to Requests for Information. If you look at the sheer volume of comments in response to the December 19, 2007 RFI you see that approximately 90 comments were received on services and related issues, under the treatments section. If we add comments about education, assistive technology, and concerns about the future, the comments number in the hundreds, a sizable percentage of all comments received.

The Autistic Self-Advocacy Network recommends a shift in focus to research into areas that will actually help families and individuals on the autism spectrum. Such research should address the domains measured by the World Health Organization Quality of Life Instrument, including, in the area of Independence, mobility, Activities of Daily Living, communication, and employment.

Regarding communications technologies and systems, the Strategic Plan mentions Picture Exchange Communication Systems but does not address other systems. PECS can not adequately represent the entire realm of Augmentative and Alternative Communication/Assistive Technology. The Strategic Plan should recommend funding specific research initiatives into emerging promising communications technologies, both for those with no or little expressive language and for those who do have expressive language but cannot always access it reliably.

Examples of such emerging technologies abound, including Aided Language Stimulation, Storybook Aided Language Stimulation, Natural Aided Language, functional communication training with AAC, and Language Acquisition through Motor Planning (LAMP). Augmentative and Alternative Communication and Assistive Technology allow people on the autism spectrum to use and develop language in ways that are natural to us, even if it is sometimes not oral language. Many of the most popular communications systems have been developed entirely without the input of individuals on the autism spectrum. To develop effective communications tools, autistic individuals must be consulted at all stages of the research, from design, through implementation techniques and evaluation.

Article on Asperger's in Northern Virginia Magazine: February 2009

2009-11-18T08:50:00.000-08:00

http://www.northernvirginiamag.com/health-and-beauty/health-beauty-features/2009/02/19/aspergers-sydrome/

Am I On the Wrong Planet?

By Tracey Meloni / Photography by Jonathan Timmes

I enjoyed being interviewed for this. Of course, I wish more really good quotes of mine had been used. ;) View the comments section for responses to the first sentence of the article. I think that sentence was there just to attract attention. I like the rest of the article. Tracey was fun to work with, as was Jonathan Timmes, who took one of the few photos of me that I actually have liked. The main reason that I agreed to being interview for this was that I wanted to promote ASAN. This was back when I was not much of a "public figure" so was very nervous about seeing my name in print. Times have changed...

A short excerpt that I think won't violate IP rights:

The Adult Sphere

Those who grew up before AS could be properly diagnosed tell heroic tales of lonely discovery. Like Plank, many felt they were living on the “wrong planet,” and many have turned adversity into success.

Paula C. Durbin-Westby is Virginia coordinator for the Autistic Self Advocacy Network (ASAN) and board member in charge of the East Coast region. She learned about Asperger’s syndrome some two years ago while at work indexing a scholarly monograph. “I saw the acronym PDD-NOS in a book I was indexing. I looked it up, saw a link to high-functioning autism … I clicked and read my life story.”

IACC comments: Jannuary 14, 2009

2009-11-18T08:48:00.001-08:00

IACC summaries of people's comments can be found on the IACC website under events, then click on the minutes for that meeting.

http://iacc.hhs.gov/events/2009/full-committee-mtg--minutes-jan14.shtml

January 14, 2009

The autism research agenda has been near-exclusively focused on causation and cure, two priorities out of step with the needs and desires of the autistic community. In the year 2008, only approximately 1% of the NIMH autism research budget was allocated to services research.
Research that focuses on discovering and eliminating autism both enters the dangerous and unethical realm of eugenics and avoids addressing the social barriers that autistic people face that prevent quality of life and full participation and inclusion in society at large. Balancing the autism research agenda to focus on quality of life will pay dividends by providing evidence on the most effective methods of delivering services and providing for an effective education across the lifespan. Such a research agenda would compliment other aspects of federal disability policy, such as de-institutionalization mandated under Olmstead v. L.C., the IDEA and NCLB requirements for evidence- and research-based methodologies, the IDEA “Least Restrictive Environment” right and increased numbers of individuals with disabilities, including the autism spectrum, in the workforce.
We recommend the following:
▪ Require that no less than half of the federal autism research budget across all departments and agencies, including NIH, CDC, HRSA, HHS, DOL and others, be allocated towards services-research.
▪ Pursue a vigorous quality of life autism research agenda focused on issues such as improved service-delivery methodologies, social barriers to full participation and quality of life, effective systems change models, means of effectively and respectfully addressing social, behavioral, emotional and other challenges, empowering communication and other priorities.
▪ Mandate that the Inter-Agency Autism Coordinating Committee include representation from autistic self-advocacy organizations, such as the Autistic Self-Advocacy Network, and that there exist parity between the number of parent, provider and self-advocate representatives in the public membership to the IACC.
-Include a specific recognition in the Strategic Plan of the perspectives of autistic adults who do not want to be “cured” of autism and who see severe ethical issues with the cure agenda.
▪ Fund research into Augmentative and Alternative Communication (AAC) options for autistic people across the lifespan, including Assistive Technology, so as to empower all autistic people to meaningfully communicate.
▪ Allocate no less than one third of the federal autism research agenda towards the needs of adults on the autism spectrum, addressing the near total lack of research funding towards the needs of this population to date.
▪Fund Community-Based Participatory Research (CBPR) models including autistic self-advocates as full partners at every stage of the research process, from topic selection to study design and implementation. Look to existing projects as models, such as the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE – http://www.aaspireproject.org).
▪ Provide for Student Loan Forgiveness for services-related and quality of life/participation-based researchers that is comparable to the loan forgiveness offered for researchers who work on basic science research.
▪ Look to research funded by the National Institute of Disability and Rehabilitation Research (NIDRR) as a model for autism research priorities.

IACC RFI: September 19, 2008

2009-11-18T08:45:00.001-08:00

Now I have done it! I have to figure out how to put this post in behind the November ones. I was being SO careful... I wrote these hoping to help people who were in the same position I had been a few months before, when writing my first RFI and wishing I had talking points. I distributed these to various listservs.
--

ASAN BACKGROUND AND TALKING POINTS ON IACC RFI- Sept. 19

Here are the links, and the information reposted. The links were inadvertently left out of the last post.

Send comments to: http://grants.nih.gov/grants/guide/notice-files/NOT-MH-08-016.html and iaccservices@mail.nih.gov. ASAN BACKGROUND AND TALKING POINTS ON IACC REQUEST FOR INFORMATION ON SUPPORTS AND SERVICES

BACKGROUND:

The Interagency Autism Coordinating Committee (IACC) has put out a Request for Information (RFI) to seek input from stakeholders (those interested in autism), including autistic individuals, about what they consider to be high-priority issues and concerns surrounding services and supports for children, youth, and adults with ASD.

The RFI is due no later than Sept. 19, 2008, seven days from now.

This RFI provides an excellent opportunity for self-advocates and allies to make our voices heard. Members of the IACC are very interested in hearing from individuals on the autism spectrum. They’ve heard extensively from the anti-vaccine crowd, from parents, experts, researchers, and from people on the autism spectrum.

More input from autistic adults at this point, when the IACC is coming close to finalizing a budget and mission statement for the Strategic Plan, will mean more attention to the issues we consider to be most important.

The focus of this particular RFI on services and supports is an area that many autistic adults have much to say about; here is a chance to say it directly to the committee that will be allocating resources to various areas. Currently, funding is skewed toward genetic research and research into treatments and interventions.

In the time that autistic individuals have been submitting comments and testifying at IACC meetings, some positive change has been noted in the amount of funds earmarked for research into services and supports.

It is important that the IACC hear from everyone who is able to comment because part of the task of assessing importance is to determine the extent of the population that has an interest in the decisions that the IACC will make.

The IACC decides levels of funding for research into supports and services, but does not fund supports and services themselves.

TALKING POINTS

The Autistic Self Advocacy Network has developed these talking points to assist individuals in writing statements to IACC on the topic of supports and services.

The RFI lists a number of areas of concern that can be addressed. You do not have to address every topic. You can pick the ones that are the most important to you. Feel free to change the wording so that it reflects your most important priorities.

Education:

Studies need to be undertaken that assess current levels of supports and services within the public education system. When treatments and interventions that look promising are developed, additional funding must be appropriated to address implementation so that teachers, students, parents, and other education professionals are up-to-date and have access to information, training, technological resources such as AAC, and other resources.

Health and medical services (including dental):

Access to health and medical services, particularly for adults on the autism spectrum, is of paramount importance for research funding. Current studies that focus on diagnosis and treatment of children do not address the very real need for healthcare access for autistic adults who may not have insurance, may have communication difficulties and other difficulties that prevent them from obtaining adequate care. Education of health care professionals so that they can interact knowledgeable with autistic patients/clients is one area for research into services and supports.

Housing:

Research into housing alternatives, following ideas such as those in the Community Choice Act and Money Follows the Person projects, should be undertaken. Warehousing of individuals in residential centers is undesirable yet often occurs because infrastructure for other types of housing is unavailable or underutilized. Research needs to include cost-effectiveness measures, some of which are already available, which show that housing in the community costs less than residential living.

Transitions:

Research into the most effective transition options needs to be undertaken. Parents and young adults on the spectrum often have nowhere to turn after they age out of the school environment. A clearinghouse of options should be researched and developed so that families will have resources already in place.

Employment:

Research into employment options and opportunities for people on the autism spectrum needs to include components such as accommodations, training, and career counseling. Research in other areas such as treatment, interventions, diagnosis, and genetic research, can be used to counter stereotypes of what an individual on the spectrum can do for employment. Resources for trainers, counselors, employers, and others need to be developed so that autistic people are not discriminated against in the employment world because of stereotypes and misunderstanding. The IACC and NIMH can set the tone for accurate information that can help employers assess individual strengths and weaknesses rather than relying on discriminatory assumptions.

Community inclusion:

Full inclusion in the community needs to be examined and research initiatives should focus on this very important aspect of adult life, and life for children who will grow into adulthood. Community-based participatory research should be implemented that will accurately reflect the actual needs of the autistic teen and adult population.

Safety:

Research into areas that can improve safety for autistic people, throughout the lifespan, and in different situations, needs to be undertaken. Areas to focus on are keeping people on the autism spectrum safe if they have a tendency to wander, or do not understand dangerous situations. Education of parents, professionals, first responders, and autistic people should be undertaken, and the best methods for ensuring safety should be addressed by research in this area. Sometimes autistic people can appear unusual in behavior, which will attract attention from law enforcement and other personnel. Training for professionals in aspects of autistic behavior that might not be understood is a crucial area to address in order to promote the safety of all.

Older adults:

Many older adults remain undiagnosed. Some have no health insurance. Some are living in poverty or are homeless. Many older autistic adults will need medication, including medication for health problems. Research into how to best reach out to older adults who may not have an autism diagnosis but may present as in need of services should be undertaken. Research into the effect of common medications, including for non-autistic-related health problems such as diabetes, should be undertaken. Because of the possibility of extrapyramidal or paradoxical drug reactions, and the general effect of certain drugs on older people, cases should be documented so that any adverse pattern of reaction can be established. Housing, health care, dental care, and community inclusion should all be addressed and tailored to the older autistic population. Community-based participatory research can be invaluable in determining the best ways to access health and other care.

Finances:

Across the lifespan, autistic children and their families, autistic adults and elders will have various financial needs. Research into how to help families and individuals on the spectrum cover the costs associated with treatments and interventions, and a clearinghouse for resources should be developed. In addition, financial resources for autistic adults who have difficulty with financial concepts should be researched and implemented.

Guardianship:

Research into the best ways to establish guardianship should be undertaken, including autistic adults as full participants in the research process in order to establish the most ethical procedures for guardianship. Guardianship should be tailored to the needs of the individual rather than being a one-size-fits-all category, since some individuals will need guardianship in limited areas, but not all aspects of their lives.

Estate planning:

Families with autistic individuals need to take extra precautions in planning an estate, especially for individuals who may need ongoing care throughout life. Autistic adults also may need assistance with estate planning. Research leading to the development of estate planning tools that can assist families and autistic individuals in making sound decisions should be initiated.

Paula C. Durbin-Westby
The Autistic Self Advocacy Network (ASAN)

IACC Comments: December 12, 2008

2009-11-18T08:41:00.000-08:00

COMMENTS DELIVERED AT DECEMBER 12, 2008 IACC MEETING

Public Law 109-416 is not just about scientific research.

The Interagency Autism Coordinating Committee has among its duties, to develop and annually update a summary of advances…related to, among other things… “access to services and supports for individuals with ASD.”

“In general the committee shall be composed of” – and it lists a number of nonscientific agency members including:

“Representatives of other Federal Governmental agencies that serve individuals with autism spectrum disorders such as the Department of Education” and other non-research organizations.

The presence of these representatives indicates that the mandate of the law is broader than scientific research, especailly as it has been more narrowly defined several times during the past two IACC meetings.

So, go back and add in the suggested services objectives such as training, safety improvement, and others. The additions about improving safety and other aspects of service development and delivery are relevant and should be addressed by this committee.

Other things: A person on the autism spectrum is needed to stand in for Stephen Shore when he is not here. This situation needs to be remedied immediately.

Increase the number of individuals on the autism spectrum who have a direct voice on the IACC committee and subcommittees

Make at least one additional change in the composition of the committee, and that is to include another agency with a focus on actual research across the lifespan. For example, the The National Institute on Disability and Rehabilitation Research has as its goal a focus on rehabilitative research that impacts individuals throughout their lives.

Remove language that urges cost savings as a goal of research. There *is* a danger that a focus on cost effectiveness will preclude those who do not “improve” or who are in need of more substantial services throughout the lifespan. The IACC should move away from language of “costs to society.”

Paula C. Durbin-Westby

(IACC summary of public comment here: http://iacc.hhs.gov/events/2008/full-committee-mtg-minutes-dec12.shtml )

IACC Presentation on Ethics in Autism Research: November 21, 2008

2009-11-18T08:40:00.001-08:00

ASAN was invited by the IACC to give a presentation on ethics in autism research. Although I gave the presentation, it was a collaboration among many people, who all worked together to develop the slide show, which can be viewed here:

http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=38

http://iacc.hhs.gov/events/2008/full-committee-mtg-minutes-nov21.shtml

The following are the comments I gave, which can also be found on the ASAN website.
--

Ethical Concerns in Autism Research: Presentation to the Interagency Autism Coordinating Committee on November 21, 2008

Note: This presentation is a collaborative effort of the people listed at the end of the presentation. The asterisks are notes to myself to emphasize certain words during the presentation. I left them in so people can see a few places where I put extra emphasis.

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The Autistic Self-Advocacy Network is an international nonprofit organization run by autistic self-advocates. Our focuses include: public policy advocacy, community-based research, social support groups, and other initiatives.

The Autistic Self Advocacy Network is here today representing the international autistic self-advocacy community's concerns about research ethics for autism. In general, we are pleased to see language in the Strategic Plan that focuses on community settings, and services research funding. We have additional ethical concerns that should be addressed in the Strategic Plan.

Major Ethical Concerns for Autism Research:

Among the most important ethical concerns we have are these:

Expanding the focus of research to the whole individual,

Including a lifespan focus and a more balanced view of Autism Spectrum conditions,

Additional members on the Interagency Autism Coordinating Committee,

Quality of life issues,

Inclusion of people on the autism spectrum in all aspects of research,

Funding considerations that have an ethical impact on the overall state of autism research.

In addition there is an ongoing concern with the lack of mention within the Strategic Plan itself, of potential ethical conflicts in genetic and other research, including “eradication of autism,” and possible unintended or detrimental effects of genetic and pharmaceutical therapies.

Expanding Focus on Whole Individual: A Balanced View of Autism

Expand research to whole individual across the entire lifespan. Ethical research will value and therefore address the entire life of the person with an autism spectrum condition, including individuals of varying abilities and disabilities.

Research that focuses only on impairments may miss positive aspects of the individual person.

Contrast the all-too-prevalent "devastating disorder" rhetoric (which I note is not at all limited to any particular subset of people on the autism spectrum) with literature about other disabilities, where there is a positive, lifespan focus.

For example, the ARC of the United States asserts: "The Arc is devoted to promoting and improving supports and services for all people with intellectual and developmental disabilities".

The National Institute of Neurological Disorders and Stroke refers to cerebral palsy, not as “a “devastating,” or a “puzzling,” disorder, as so much of the introductory material in published autism research does, but asserts” Cerebral palsy isn’t a disease… There is no cure for cerebral palsy, but supportive treatments, medications, and surgery can help many individuals improve their motor skills and ability to communicate with the world.”

While NIMH and the IACC are obviously not first and foremost service-delivery organizations, the goal of all scientific research into any disabling conditions should ultimately be the application of that research to real-life situations in ways that directly benefit the subjects of that research.

Including People on the Autism Spectrum on the IACC:

People on the autism spectrum are a major stakeholder group, yet is felt by many of us that autistic adults have been effectively excluded from the process by virtue of our *organized constituencies* not having had a seat at the table. The Strategic Plan should remain open to additional changes until this issue is addressed and more autistic members are appointed to the workgroups, committees and the IACC itself. If the one member on the autism spectrum is absent during voting and discussion, the concerns of people on the autism spectrum may not be adequately represented. [Note: I tried to put a lot of emphasis on this sentence, which I added when I saw that Stephen Shore was not present and did not have a stand-in.]

The IACC and its workgroups should better represent the diversity of stakeholder groups in the process.

Include people who use alternative and assistive communication, draw autistic members from a wide age range, and draw from people with diverse living and working situations.

In addition, include autistic adults who have perspectives other than “prevention” and “cure.” We are an important stakeholder groups and recognition of our concerns and policy goals must be included in any *ethical* undertaking.

Quality of Life Issues

• Domains measured by World Health Organization Quality of Life Instrument:

– Social Relationships & Social Support
– Physical Health
– Mental Health/Psychological Health
– Independence: Mobility, Activities of Daily Living, Communication & Work Capacity
– Transportation Access
– Vocation
– Recreation & Leisure

All of the domains here are aspects of quality of life in regards to health according to international standards.

With only about 1 percent of the NIMH budget for the year 2008 devoted to services and supports research, many of these quality of life issues, which are priorities for people on the autism spectrum, will remain *unfunded* or *underfunded*.

Ethical research studies things valued by autistics (for example employment, education, attitudes, economic and health disparities).

Inclusion of Autistic People As Research Collaborators

One among a number of models for including people on the autism spectrum in research projects is community-based participatory research.

Research is not only scientific and medical but also affects decision-and policymaking about the groups studied.

Ethical research seeks to understand first-hand perspectives -- that is, autistics themselves should be asked about their lives, experienced, opinions, values, etc., etc. rather than primarily having others speak for them.

In addition, we do not find it ethical for the research community (or the professional community) to treat autism like it's a disease or illness. Autism is a developmental disability and not a condition that stands alone. Autism is often discussed in a quite different manner than other developmental disabilities are, as I already mentioned in my previous comments.

In addition, autistic community members should be represented on IRBs/ethic review boards for protocols that include or exclude them, and on grant review panels.

(A slide of the CBPR process was shown, which can be found on the AASPIRE website http://www.aaspireproject.org/about/cbpr.html)

Researchers and community partners each contribute their own strengths to a project. CBPR principles are reflected operationally on each side of this diagram.

The Academic Autistic Spectrum Partnership in Research and Education is one example of a community-based participatory research team. Current research focuses on improvement of health care for autistic adults.

Of the two co-directors, one is on the autism spectrum and the other is not. [I had to cut out a number of comments on AASPIRE, which I have already talked about at previous IACC meetings, due to time constraints.]

Funding considerations

The May 2008 figure I have of 1.6 out of 127 million dollars toward research into supports and services across the lifespan is a somewhat disturbing statement about the priorities of NIMH and the private organizations that partner to fund research.

Choice of topics studied *is* driven by funding. If little funding is available for research that can have an *immediate* impact on the well-being and life chances of individuals on the autism spectrum, researchers will turn to other areas where funding exists, and away from the research that might make the *most* difference in the lives of individuals and their families. We consider supports and services research to be of utmost importance.

We therefore urge a shift of funding away from a narrow focus on causes, cures, and the “recovery,” concept, which has been shown to be invalid for other populations once thought to be “curable,” such as homosexuality. The focus should be on maximizing skills , like communication, and not on “reducing autistic traits,” especially when those traits do not seem to be well understood by non-autistic researchers or the general population.

Move instead toward a focus on services and supports, including communication technology, and *affordable* communication technology, which will be *much* more effective for a larger number of people on the autism spectrum. We also urge replacement or removal of language such as “ASD costs impacts” since true costs are in terms of an inaccessible society. Lack of employment among African Americans does not mean that their presence “costs” society somehow. Whereas in the case of racial and ethnic minorities, change comes in the form of laws that attempt to change inequalities in the structure of society, in the case of people on the autism spectrum, the societal changes come in the form of effective service delivery and supports. We request removal of prevention-oriented language and goals in general, throughout the Strategic Plan. Funding services and supports might indeed be more cost effective than funding attempts to prevent what in all likelihood is a legitimate part of natural human diversity.

Ethical Concerns in Autism Research: Contributors [in alphabetical order]

• Anne Corwin. Team Member, AASPIRE
• Paula C. Durbin-Westby. Board of Directors, ASAN
• Katherine McDonald, PhD, Assistant Professor, Community Psychology, Portland State University. Researcher, AASPIRE
• Ari Ne’eman. Founding President, ASAN
• Christina Nicolaidis, MD, MPH, Associate Professor, Departments of Medicine and Public Health and Preventive Medicine, Oregon Health and Science University. Co-Director, AASPIRE
• Dora Raymaker. Board of Directors, ASAN. Co-Director, AASPIRE.
• Scott Michael Robertson. Vice President, ASAN. Researcher, AASPIRE

This presentation is a collaborative effort between the individuals listed here and a number of other autistic community members and non-autistic supporters.

Ashland University Presentation: November 3, 2008

2009-11-18T08:02:00.000-08:00

I gave this presentation at Ashland University in Ashland Ohio. I was invited by the Honors Class, whose readings for the semester included Mark Haddon's The Curious Incident of the Dog in the Night-Time.
Since I was asked to present on literature and popular culture, I came up with

Autism, Literature, and Popular Culture: The Curious Coincidence of
Autism Metaphors Across Diverse Genres

The lecture can be viewed here. I will say in my defense that the laptop I was using for the PowerPoint was situated to the side so I had to keep looking down to change slides. The camera was level with my head, and most of the attendees were below camera level. Just in case you were wondering....

http://mediasite.ashland.edu/mediasite/Viewer/?peid=719a7a6a-6092-47c9-af49-51f9375e0618

The abstract:

This presentation, Autism, Literature, and Popular Culture: The Curious Coincidence of Autism Metaphors Across Diverse Genres, presents an in-depth look at autism metaphors in literature and popular culture, from the perspective of an autistic cross-disability advocate and writer. The presentation first looks at Mark Haddon’s The Curious Incident of the Dog in the Night-Time, and then branches out to discuss several other contemporary novels. A number of nonfiction sources including books, advertising campaigns, media reports, and government proceedings will be examined. Literature handed to parents of newly diagnosed children is another source of autism metaphors that pervade multiple sites of inquiry. A common trope among most of the genres examined is “the moment of diagnosis,” with the question “To cure or not to cure?” following close on its heels. Critiques of the various novels and documents, by writers on the autism spectrum, shows alternative and perhaps previously unconsidered viewpoints. It is hoped that the audience will gain new insights into the nature of autism spectrum conditions and the lives of those who live, work, and attend college on the autism spectrum.

I also gave "version 2.0" of this presentation at the University of Mary Washington in Fredericksburg, VA, on March 25. 2009. I added an entirely new section on art by autistics, including works by Dora Raymaker http://doraraymaker.com/ and Katie Miller http://www.artistkatiemiller.com/

Florida Hearing on Proposed Rules for the Use of Reasonable Force

2009-11-18T07:46:00.000-08:00

August 28, 2008

Florida Hearing on Proposed Rules for the Use of Reasonable Force by School Personnel:

http://web.tcpalm.com/2008/08/28/restraintranscript.pdf

ASAN Statement on Restraints to Florida Dept. of Education
The Autistic Self Advocacy Network, a grassroots organization of people on the autism spectrum, supports a complete ban on prone restraint, with no exceptions. No child should be restrained because of behaviors that are part of a disability. In addition, we support positive behavioral supports rather than the use of restraints.

Many important areas are not addressed in the proposed rule. The rule as promulgated provides no clarification on use of prone restraint, no clarification of the use of restraints and seclusion for behaviors that are often specific to the student's disability, such as property destruction which was mentioned by one parent here. The term "reasonable" is too vague.

The word "should" needs to be replaced by the word "will," otherwise the regulations become meaningless. We strongly recommend notification of parents for any disciplinary measure. We support the inclusion of language that would hold schools accountable for violations of the regulations. First and foremost the regulations need to be clarified. Too much is left to the discretion of school personnel.

We urge training of all personnel and monitoring of all interventions used with students. We oppose corporal punishment and seclusion techniques. The rule needs to be standardized across the state rather than left up to the discretion of local school boards.

Paula C. Durbin-Westby

JLARC Comments: November 30, 2008

2009-11-18T07:30:00.000-08:00

NOTE: Two problems with the comments: The first is that I was not aware of some of the views of PBS by autistics who have had negative experiences with PBS. I have had numerous conversations with people: autistics, family members, researchers, PBS practitioners, etc., since then and been made aware of a number of problems associated with PBS. Currently I have been dialoging with some individuals and organizations about the need for changes in PBS approaches, especially the need to consult with autistic people about autism rather than just trying to figure out autistic behavior/characteristics from a non-autistic (and therefore not fully informed) point of view.

Second, I did not get full approval from the ASAN Board for these comments, so these are really just my own writing (at the time: If I wrote them again now, they would be quite different in regards to PBS and also "degree of remaining disability," which I don't like for other reasons).

What follows is the unadulterated comments I sent to JLARC:--

The Autistic Self Advocacy Network appreciates the Joint Legislative
Audit and Review Commission (JLARC) opportunity to address the state
of autism services in Virginia.

In general, a main factor that impacts the ability of Virginians on the autism spectrum to access services is the lack of a central location online, or agency-based clearinghouse to access information about services. Information about autism
and developmental disability-related services and programs is not
disseminated from any central location.

Adults on the autism spectrum may need accommodations in order to access information about services, and the services themselves. Some options include online information access in a single location.
Information should include housing options, health care access, and
assistance in navigating various agencies and systems, since often the amount of information, paperwork, phone calls, etc. can preclude
someone being able to access assistance effectively, if at all.
Families of adults on the autism spectrum often also need access to
information about available services. The EasyAccess site does provide some information but a search of that site does not provide autism-specific information that could be useful to parents and people on the autism spectrum.

The VA Board for People with Disabilities or another DD agency should have an online portal, and also dedicated staff, to ensure that families, and individuals on the autism spectrum, are able to obtain accurate and timely information.

Key services needed:

Housing:
Alternatives to group homes, ICF/MRs and institutions. Put
more money into the hands of people on the autism spectrum and
families rather than shoring up aging institutions. Virginia is one of only three states that has closed no institutions. The DD and MR
waiver wait lists are years long. Consider public-private initiatives. Housing considerations should include: accessibility to public transportation, safety considerations, affordability, and availability of support personnel if needed.

In addition, the lack of accessible, affordable housing is a major barrier to independent living.

Health care access for age 21 and over:
Adults on the autism spectrum need access to medical services,
including appointment-making assistance, help with identification
of health needs, preventative health care, and training of medical personnel including office staff, so that access is more likely and more effective.

Identify, develop, and disseminate "autism-friendly" physicians' practices, with such accommodations as online scheduling, some assistance with insurance claims, and the like. This could be a pilot project with input from people on the autism spectrum. A current community-based research project by The Academic Autistic Spectrum Project in Research and Education is studying health care access issues. Utilize findings from this study (when available) in order to determine health care needs and access
needs of adults on the autism spectrum.

Personal assistance services (PAs)
are needed by some individuals on the autism spectrum, both children, and adults who have aged out of education and health insurance systems. The Autistic Self Advocacy Network recommends training of appropriate service personnel, with input from autistic adults, who will have the most informed ideas about what kinds of care they need.

Assistive technology access:
Information about assistive technology, including assistive and augmentive communication devices available, funding sources, and state insurance requirements. Information and links to assistive technology information sites, and decisionmaking options (not just sites that actively sell assistive and augmentive communication devices) should be provided at the central location we recommend.

Transition supports:
Under the Individuals with Disabilities Education Act, students with disabilities who have Individualized Education Plans must receive a plan for transition by age 16. However, Virginia state law mandates that such a plan be implemented by age 14. This earlier age for transition planning should be kept in place. In addition, to facilitate effective transition planning, the state should work to integrate the adult services infrastructures, such as Vocational Rehabilitation, Community Living and similar service-delivery systems, with the transition process in Virginia high schools. Experiential learning options have been shown to have a positive impact on student transition and should be incorporated into student IEPs in a way that works with the unique strengths of autistic students. Furthermore, Virginia must work to increase the number of students on the autism spectrum who will have access to higher education opportunities. As students with disabilities in the post-IDEA infrastructure sometimes require documentation to qualify for ADA accommodations in higher education and the workplace, Virginia should institute a requirement that schools offer parents the opportunity to receive new, current educational testing prior to graduation, in order to ensure students leave school with the necessary materials for accessing their legal rights in the post-IDEA infrastructure.

Employment options:
Training of employers and co-workers so that more people on the autism spectrum can be placed in situations that will work for both the employee and the employer. Suggestions include an information brochure for employers who are identified as wanting to participate in an assisted employment program. Input from adults and teens on the autism spectrum as to needs in the workplace is crucial.

Job counseling for individuals on the autism spectrum. The job counseling should be individualized and tailored to the individual’s needs and understanding about employment options. Job counseling should not follow stereotyped assumptions about what jobs or employment situations are appropriate for people on the autism spectrum. Again, input from and consultation with autistic adults can be invaluable.

Transportation:
Many teens and adults on the autism spectrum do not drive, yet have transportation needs for employment, health care, personal, and recreation needs. Increasing the types of transportation available, both fixed-time and route and on-demand services, is crucial for full integration into the community. In addition, some adults may need assistance with understanding bus schedules and other forms of transportation so as to be able to access available transportation. One model, which takes into account such issues as sensory differences, is the United Kingdom’s Disabled Persons Transport Advisory Committee. This committee works to address barriers to accessibility, including the training of transportation staff in awareness of various disabilities and how they impact users of public transportation.

Adequacy of autism service delivery system:
Diagnoses of young children: Some publications in the state of VA
geared toward newly diagnosed children are unnecessarily alarmist. A
quote from the first sentence in a packet from on of the major
diagnostic clinics: "Parents are devastated when they learn of an
autism diagnosis." This leaves no room for parents to have other
reactions, and has been off-putting in some cases, leading parents to look elsewhere for information. Diagnoses should stick to facts about autism spectrum conditions.

Diagnosticians should consult with parents, families, and individuals on the spectrum as to the best ways of disseminating information about diagnoses. The Autistic Self Advocacy Network currently consults with parents of newly diagnosed children to provide alternative, and more affirming views of autism without neglecting the very real challenges that families and
individuals on the spectrum face.

Public school services:
Training of aides and teaching assistants in understanding of autism
spectrum conditions. In addition to knowledge about behaviors, consult with adults on the autism spectrum for information about why behaviors occur. Consultation with adults on the autism spectrum, who are necessarily more familiar with the needs of autistic persons than anyone else, should be a preferred source of information on this matter.

Strategies like Positive Behavioral Supports should be developed and implemented throughout all school districts. Pilot programs can be developed in several districts and then disseminated throughout the entire state. (*see comments above about my position change on PBS.)

There is no regulation or oversight regarding the use of restraints
and seclusion time-outs for children with special needs, including autism, in Virginia public schools. The only document is the 2005 "Guidelines for the Development of Policies and Procedures for Managing Student Behaviors in Emergency Situations in Virginia Schools Focusing on Physical Restraint and Seclusion."

The preface to the document asserts: "These guidelines are informational and are neither mandated nor required." Without adequate regulation and legislation regarding the use of restraints and seclusion, children, particularly those with special needs, including autism, are at risk for being subject to abuse of restraint devices and seclusion rooms.

Adequacy of coordination of services over entire lifetime:
Many parents and individuals on the autism spectrum feel that once they age out of the school system, there are few services, and the services there are, are not accessible. Parent advocates and self-advocates are creating their own programs (one source is graduates of VBPD's Partners in Policymaking program) to fill in the gaps in: supported employment, housing, community day programs, and others.

State-level and/or public-private initiatives (with oversight) need to be in place. Children who are on the autism spectrum now will grow into adulthood as autistic individuals, many with some remaining degree of disability, even with the effectiveness of early intervention programs. Services and supports need to be in place and ongoing for future generations of Virginians with developmental disabilities.
The Autistic Self Advocacy Network has a growing network of
consultants on the autism spectrum who can assist with development of programs, interface with the public (including families as well as individuals on the autism spectrum).

VA Special Education Regulations: November 30, 2008

2009-11-18T07:07:00.000-08:00

These are comments I sent in to Virginia's Department of Education regarding changes to the Special Education Regulations. The comments are my personal thoughts about the special education suggested changes, and were not intended to be an ASAN comment.
---

I am a concerned citizen writing in regards to the proposed changes to the Special Education regulations.

In general I oppose any changes in the special education regulations that limit parental involvement, that reduce eligibility for services, that reduce requirements for effective assessment, and that support one-sided decisions by school and VDOE personnel that could result in inadequate support, inclusion, and education of students with disabilities.

I oppose the limiting of the developmental delay category to the ages of 3 to 5 years old. Some children are not as easily identified and to limit the time period to 5 years of age will leave many children without services which could benefit them during their school years and beyond.

The definition of autism should match the federal regulations which use the term “identified” rather than “diagnosed.” Diagnosis of autism is not conducted by school personnel and is not the proper term to use in educational settings. If a child is identified by school personnel, rather than having an outside professional diagnosis, for purposes of receiving services, the educational identification should be used.

Disability categories should not include eligibility criteria that exceeds that of federal regulations. Exceeding federal regulations may be a violation of IDEA and a violation of federal law.

I oppose removing the appointment of due process hearing officers from the Virginia Supreme Court list and moving the responsibility to VDOE. Having VDOE be responsible for due process hearing officers is a clear conflict of interest. In addition, other conflicts of interest arise in the proposed changes, such as allowing LEA members to vote on local advisory committees.

Gender and race requirements are not in the best interests of children with disabilities. What is needed is thoughtful and committed individuals. Where are you going to find enough men to reflect, for example, the fact that many more boys than girls are identified as having autism spectrum conditions?

I oppose the elimination of the requirement that a parent consent to termination of special education eligibility and other related services. The best interests of the child are not served by elimination of parental consent. Parents are supposed to be equal partners on the IEP team, but if their rights in this area are terminated, they lose an important voice into the education of their child.

A Functional Behavioral Assessment is not simply a review of previous data. A Functional Behavioral Assessment is supposed to be an up-to-date examination of the child’s current functional behavior, not just a review of paperwork. I oppose changes to the regulations that would move in the direction of FBAs being merely a review of preexisting information.

I also oppose the elimination of parental consent prior to providing special education services to transfer students.

I oppose the elimination of Child Study Committees. The timeline protections would be affected and once again, parental input will be minimized. Child Study Committees are one way that parents and school personnel can work together to come up with the best possible educational plan for children with disabilities.

Respectfully submitted,

Paula Durbin-Westby

IACC Comments: May 12, 2008

2009-11-18T07:01:00.000-08:00

The IACC minutes for this meeting are here:

http://iacc.hhs.gov/events/2008/full-committee-mtg-minutes-may12.shtml

I notice that I've repeated myself several times, comparing with my March 14 testimony. After that, I started trying to put in new ideas in each of my public comments so that IACC members would not automatically turn off their ears when I started talking.

--
Members of the committee:

My name is Paula Durbin-Westby. I’m a wife, mother, and an autistic citizen and taxpayer. I have an interest in how funds from Pub. Law No. 109-416 are allocated.

I am concerned that research priorities not be driven by emotionally charged language used by fundraising organizations, or a disproportionate allocation of funding to research that may have limited application for autistic people and their families.

What is needed is accurate and well-informed research into the real lives of people on the autism spectrum. A large part of the focus needs to be on treatments and interventions that will be beneficial to autistic people now. Studies are needed into effective service delivery across the lifespan.

Community-based participatory research is a promising avenue for exploration. With community-based research, persons affected by the condition are full participants in every stage of the research process.

As outlined in a recent Funding Opportunity Announcement for community-based participatory research into medically underserved communities, “community” refers to populations that may be defined by a number of parameters, including disability or health condition; or to groups that have a common interest or cause. The autistic community, while not a monolithic voice, fits the description in the federal funding announcement.

Treatment research also must include people on the autism spectrum: Treatment studies that focus only on trying to make us seem or be neurologically typical can have detrimental effects. Many anecdotal stories exist of people becoming quite stressed in their 20s, 30s, and 40s, due to a lifetime of pressure brought on by trying to adopt behaviors that are not natural for us. In this area, it is crucial to consult with people on the autism spectrum to determine the best methods for interventions and treatment. Adults who can communicate about our experiences with autism are one of the best resources for determining which treatments and interventions will help without causing unintended damage. Any studies undertaken without the participation of people on the autism spectrum can be marred by incomplete knowledge of the population being researched. Members of the autistic community should be collaborators in the research above and beyond being research subjects.

I am glad to see Stephen Shore as a member of the IACC. I do not know if anyone else on the autism spectrum has a position of authority within the IACC, other federal agencies, or working groups represented by the committee. People from the autistic community need to be involved at every level of research and policymaking.

According to the website for one large fundraising organization, “Today, 1 in 150 individuals is diagnosed with autism, making it more common than pediatric cancer, diabetes, and AIDS combined.” Unlike the diseases mentioned above, however, autism is not a terminal disease. Alarmist language used by fundraising groups has no real place in determining research and policy priorities. Once again, having autistic members on task forces that interface with public about autism can help determine the best language to use to avoid stigmatizing rhetoric. The current FOA for Reducing Mental Illness Stigma and Discrimination should include members of the autistic community, since language needs to be developed that will counteract the negative messages often found in the media.

Do not federally fund research that has eugenic implications. Members of the autistic community are quite concerned that tests will be developed that will be used to eliminate us from the broader spectrum of humanity. Currently there is at least one prenatal test for autism, offered by Children’s Hospital Boston- the chromosome 16 deletion/duplication test. The current level of misinformation, partial information, and use of emotionally charged language about autism might conceivably lead to the same results that have been seen with Down Syndrome where 80-90% of fetuses are aborted. Who would not seriously consider not carrying a fetus to term whose condition is equated with cancer, diabetes and AIDS, if that’s the best information they have? This comment from Suzanne Wright, saying: “We’re now playing catch-up as we try to stem the tide and ultimately eradicate autism for the sake of future generations” really makes little sense unless you can convince entire biological families to stop having future generations of children.

Federal research funding should not be equated with research that could be interpreted as a program of eugenics for any subpopulation of United States citizens. This type of research does not help us or our families, which often have several generations of family members on the autism spectrum.

Thank you for your time and consideration.

IACC Commentary: March 14, 2008

2009-11-18T06:48:00.000-08:00

A reference to this can be found on the IACC website here. Several other autistic self-advocates also commented on this date:

http://iacc.hhs.gov/events/2008/full-committee-mtg-minutes-march14.shtml

Members of the committee:

My name is Paula Durbin-Westby. As an autistic citizen and taxpayer, I have an interest in how funds from Pub. Law No. 109-416 are allocated.

I am concerned that research priorities not be driven by emotionally charged language used by fundraising organizations, or a disproportionate allocation of funding to research that may have limited application for autistic people and their families.

What is needed is accurate and well-informed research into the real lives of people on the autism spectrum. A large part of the focus needs to be on treatments and interventions that will be beneficial to autistic people now. Studies are needed into effective service delivery across the lifespan.

Community-based participatory research is a promising avenue for exploration. With community-based research, persons affected by the condition are full participants in every stage of the research process.

As outlined in a recent Funding Opportunity Announcement for community-based participatory research into medically underserved communities, “community” refers to populations that may be defined by a number of parameters, including disability or health condition; or to groups that have a common interest or cause. The autistic community, while not a monolithic voice, fits the description in the federal funding announcement.

Treatment research also must include people on the autism spectrum: Treatment studies that focus only on trying to make us seem or be neurologically typical can have detrimental effects. Many anecdotal stories exist of people becoming quite stressed in their 20s, 30s, and 40s, due to a lifetime of pressure brought on by trying to adopt behaviors that are not natural for us. In this area, it is crucial to consult with people on the autism spectrum to determine the best methods for interventions and treatment. Adults who can communicate about our experiences with autism are one of the best resources for determining which treatments and interventions will help without causing unintended damage. Any studies undertaken without the participation of people on the autism spectrum can be marred by incomplete knowledge of the population being researched. Members of the autistic community should be collaborators in the research above and beyond being research subjects.

I am glad to see Stephen Shore as a member of the IACC. I do not know if anyone else on the autism spectrum has a position of authority within the IACC, other federal agencies, or working groups represented by the committee. People from the autistic community need to be involved at every level of research and policymaking.

According to the website for one large fundraising organization, “Today, 1 in 150 individuals is diagnosed with autism, making it more common than pediatric cancer, diabetes, and AIDS combined.” Unlike the diseases mentioned above, however, autism is not a terminal disease. Alarmist language used by fundraising groups has no real place in determining research and policy priorities. Once again, having autistic members on task forces that interface with public about autism can help determine the best language to use to avoid stigmatizing rhetoric. The current FOA for Reducing Mental Illness Stigma and Discrimination should include members of the autistic community, since language needs to be developed that will counteract the negative messages often found in the media.

Do not federally fund research that has eugenic implications. Members of the autistic community are quite concerned that tests will be developed that will be used to eliminate us from the broader spectrum of humanity. Currently there is at least one prenatal test for autism, offered by Children’s Hospital Boston- the chromosome 16 deletion/duplication test. The current level of misinformation, partial information, and use of emotionally charged language about autism might conceivably lead to the same results that have been seen with Down Syndrome where 80-90% of fetuses are aborted. Who would not seriously consider not carrying a fetus to term whose condition is equated with cancer, diabetes and AIDS, if that’s the best information they have? This comment from Suzanne Wright, saying: “We’re now playing catch-up as we try to stem the tide and ultimately eradicate autism for the sake of future generations” really makes little sense unless you can convince entire biological families to stop having future generations of children.

Federal research funding should not be equated with research that could be interpreted as a program of eugenics for any subpopulation of United States citizens. This type of research does not help us or our families, which often have several generations of family members on the autism spectrum.

Thank you for your time and consideration.

January 4, 2008: IACC Request for Information

2009-11-17T10:33:00.000-08:00

This is my response to the IACC Request for Information:

http://grants.nih.gov/grants/guide/notice-files/NOT-MH-08-003.html

“The purpose of this time-sensitive RFI is to seek input from ASD stakeholders such as individuals with ASD and their families, autism advocates, scientists, health professionals, therapists, educators, state and local programs for ASD, and the public at large about what they consider to be high-priority research questions.”

My comments are as follows:

--
IACC Members:

In order to implement the many real-life programs that should be made available for people on the autism spectrum, the general public will need to be more accurately informed and less alarmed about autism. It is from the ranks of the general public that future teachers, employers, aides, coaches, and other support personnel will be drawn.
Military language such as “combating autism” and “war on autism” should not be used to talk about autism and autistic people. The language is offensive to many people on the autism spectrum. It may be that when the wording and title for the Act was created, sponsors and policy experts were unaware of that fact. Now would be a good time to change the name of the Act to something with less violent imagery, to reflect the concern that the autism community purports to have toward autistic people.

In addition to research into causes of autism, funds need to be earmarked for developing programs to address the needs of families and autistic persons.

Treatments need to be developed that will address changing needs of autistic people across the lifespan. In addition to a focus on improving individual outcomes during childhood through treatment, a realistic assessment needs to be done that will address the many children who will become adults who will need a range of services, including adult day care, residential and employment opportunities, and community inclusion. Treatments should take into consideration specific needs, abilities, and characteristics of autistic people.

The experience and expertise of people on the autism spectrum should be taken into consideration when developing treatment programs. A wide variety of people on the autism spectrum, not just one or two voices, need to be heard. The input of people on the autism spectrum should be consulted for each subsection of the RFI including treatment, diagnosis, risk factors and biology. A wealth of information already exists online and with the inclusion of autistic voices in the decisionmaking process, advances in many areas can be enhanced.

For example (since numerous articles and comments by adults on the autism spectrum discuss this issue), eye contact training is often stressed, yet autistic teens and adults often talk about the fact that they can, in a conversation, either make eye contact, or follow the conversation, but not both. For people with auditory processing difficulties, the choice to make eye contact may mean missing the meaning of what was said. For others, putting effort into maintaining eye contact means that they have less attention to focus on what is being said. If treatment plans ignore the input from adults on the autism spectrum about their experiences with eye contact, outcomes may be less desirable. A better approach would incorporate multifaceted interventions that would focus on a range of skills and not just eye contact for the sake of eye contact.

Using the same example of eye contact, treatment and intervention plans should also address the environment, both physical and social, that the autistic person will be in. Training for people *not* on the autism spectrum can help alleviate some difficulties, because an accurate understanding of autism can help facilitate communication between autistic and non-autistic people. (Once again, alarmist and inaccurate portrayals of autism spectrum disorders will not help to achieve this outcome). A good article explaining eye contact, by Jean-Paul Bovee can be found at: http://www.maapservices.org/

For the specific subpopulation in residential centers such as the Judge Rotenberg Center and others, studies have been undertaken by the Child Welfare League showing that reduction in use of restraints and aversives is possible, and that the outcomes are often better than with the use of negative reinforcement. Research needs to be done into the most effective ways of using restraints and aversives, if they are used at all, in compliance with USC Title 42, Chapter 6A, Subchapter III-A, Section 290jj.: “Requirement relating to the rights of residents of certain non-medical, community-based facilities for children and youth.”

The funds appropriated for Pub. Law No. 109-416 need to be spread among a variety of approaches, rather than focusing the bulk of research money on finding causes for autism, or a too-narrow emphasis on early intervention. Many children, teens, and adults on the autism spectrum are in need of services now, not far in the future when a “cure” can be found. For those who are living now, and those who will be born up until the time autism can be cured, which seems to be unlikely given the way the brain develops, but the focus of most of the research initiatives, real-world solutions to the problems of daily living need to be addressed.

Policymakers should conduct an accurate assessment and decide on a formula for distributing funds that will take into consideration both interest in research into causes of autism and the needs of families and people with autism.

Support for families:

-Adult daycare programs need to be created that do not just warehouse people. Programs need to be developed that will integrate autistic people into their communities, provide learning opportunities that can lead to employment, and enhance the well-being of the entire person.
-Employment assistance and ongoing support. Creative alternatives for employment such as job sharing, incentives for employers to hire autistic employees, and coaching in various aspects of employment.
-Community involvement and inclusion (which necessarily involves community understanding brought about by accurate portrayals of autism to the general public).
-Housing options, including private housing, group housing, and support systems for those living away from parents and families.
-Insurance coverage, including private insurance, Medicaid options, creative financing options for parents and families with autistic teens and adults who may need lifelong care.
-Respite care for families who cannot realistically take care of an autistic person around the clock every day of the year.

Training of professionals:

-Training programs for people who work with those on the autism spectrum. When programs are developed to address ongoing needs across the lifespan, trained professionals will need to be in place to manage the programs.
-Adequate compensation for persons trained to work with those on the autism spectrum, in order to avoid scenes like the recent event at the Judge Rotenberg Center, where staff administered numerous electric shocks to two residents due to a prank phone call.

Education:

-Training of classroom teachers in inclusion situations, and also training for all school personnel who might come in contact with a person on the autism spectrum. Recent school controversies indicate that teachers, aides, and other staff are poorly equipped to deal with ASDs, often resulting in significant harm to the person with autism and a negative experience for all concerned.
-Parents need to have easily understandable access to laws affecting their child’s placement, IEP, and other issues. Combative stances often taken by schools force parents who are already stretched to their limits to become experts in education law. With more training and a proactive approach to education issues, both families and school systems will save resources, both personal and financial.

Best regards,

Paula C. Durbin-Westby

December 9, 2007: Ransom Notes

2009-11-17T10:19:00.000-08:00

This is from December 9, 2007. I first started working on the Ransom Notes issue about 24 hours after the NYU Child Study Center issued a press release (December 5) about the "ransom notes" ads. Links to the ads and several blog posts (blogs from December 4 and 5) alerted me to the issue.

abfh posted here:

http://autisticbfh.blogspot.com/2007/12/held-for-ransom.html

Kristina Chew posted at Autism Vox. The current link is this:

http://www.blisstree.com/articles/the-invasion-of-the-normal-child-snatchers/

As well as gathering info on who to contact (within the NYU Child Study Center, corporate contacts, etc.) I sent this letter, or versions of it, to all the corporate sponsors of the NYU ads, to various individuals within the Child Study Center, and other associated individuals and organizations:

I'm writing about The NYU Child Study Center’s "Ransom Notes" campaign, to ask you to pull the ads at once.

The "child held for ransom" metaphor has no scientific basis, and the language used is misleading and largely inaccurate.

Some unintended consequences of your ad campaign might be:

1. An *increase,* rather than a decrease, in suicidal behavior among children and youth who see the negative ads as aimed at them personally, or who become even more stigmatized by society as a result of the demeaning imagery.

2. Bullies capitalizing on the “held for ransom” idea who may actually capture a disabled child, with potentially fatal consequences. Studies have shown that when a group is singled out for negative, derogatory rhetoric, an increase in hate crimes against that group often follows.

3. Parents unwilling to seek out treatment for their child because they think the ads reflect the attitudes of staff they might meet at your center.

4. Parents unwilling to seek out treatment because they fear the stigmatization that the ads encourage.

5. Parents who are familiar with these disorders are not going to believe the ads and are less likely to come to you for help, thus undermining your credibility and decreasing rather than increasing the number of children served.

Please end the campaign. Plan any future campaign with input from the disabled and parent communities who are the intended recipients of your services.

Thank you for taking the time to read this.

Paula Durbin-Westby

--
The Autistic Self Advocacy Network sent out a call to action:

http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=21

put out a petition against the Ransom Notes, which had over 1300 reponses:

http://www.petitiononline.com/ransom/petition.html

and put out a letter signed by over 20 cross-disability organizations:

http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=38 (you will need to scroll down almost to the bottom to click on the link to the letter).

Sept. 23, 2007 advocacy

2009-11-17T09:06:00.000-08:00

September 23, 2007. The first advocacy-type thing I have listed in my computer is the initiative opposing criminal charges against a student in Kentucky. A 6-year old child was to be brought up on criminal charges for allegedly assaulting a teacher’s aide. I received the information via another blog on Sunday night and the hearing was on Tuesday. The first record I have of the issue is a post I made to the ASAN Discussion group on Sunday September 23. Short, but to the point:

“http://www.wcpo.com/mostpopular/story.aspx?content_id=1faaed2c-0902-
4c23-8d9a-52c47e6bd24f

Is anyone near KY? What are our options for responding to this?

Paula”

NOTE: I have tried to modify this entry to ensure that it does NOT suggest that ASAN or any individual or organization had a direct effect on the judge in the decision (or it should not have). Thank you to a lawyer for pointing this out to me.

I remember being up all night and getting one hour of sleep as I looked for contact information for officials in Kentucky. I began making phone calls on the 24th. This was back when phone calls made me very anxious! I have gotten a lot more used to them since then.

ASAN rapidly put out a call to action on the 24th. The community-wide response came from ASAN, as well as other individuals, parents, disability rights activists, and was addressed on a national and even international level.