Tuesday, April 22, 2014

Autism Acceptance is NOT about ABA and Therapy

It was bound to happen. Autism ACCEPTANCE is being (or trying to be) appropriated by other organizations. One is Autism Speaks, of course, which tags things with "autism acceptance" with one hand while saying "I am autism... I know no morality" with the other.

Another business calls itself Autism Acceptance and is getting rather high up in the "hit list" when you do a search on Autism Acceptance. I will attach a photo. This is the same business that tried to trademark "Autism Acceptance" as a term. It is therapy-related, and I think ABA-related. Some Autistics and parents do not like ABA, as it has a history of abuses tending to try to "normalize" us. I won't get into a discussion of ABA here, but do read writings by Autistics and others before jumping on that. And, it's NOT acceptance. Remember "If you're trying to cure something, it's not that accepting." http://paulacdurbinwestbyautisticblog.blogspot.com/2013/04/if-youre-trying-to-cure-something-its.html

I apologize for not being able to buy every single URL that relates to autism acceptance. The person who bought this URL did it as fast as possible, quite a while ago, and there is not much I can do about it.

No, "synaptol" is not a remedy for intolerance. It is a "cure" for autism. NOT ALL THAT ACCEPTING. Yes, I realize that it's just an ad the person bought to monetize their site and get their site higher up in the search engines. While it is perfectly acceptable to legally name your business anything you want to name it, by using Autism Acceptance, it waters down the crucial message of COMPLETE ACCEPTANCE of Autistic people AS WE ARE, not as we might be after some sort of (costly or not) intervention.

Tuesday, March 25, 2014

Autism ACCEPTANCE- Tone it Down Taupe Sponsors iPad Giveaway in April

Tone It Down Taupe -The iPad mini scholarship is on! Details below…

Tone it Down Taupe is sponsoring this fantastic gift giveaway for two deserving Autistic adults for April’s Autism Acceptance Month celebration. TiDT’s initiative is to put a halt to the fear from myths and stereotypes which are perpetuated about Autistic people. TiDT says, “Tone it down. Tone down the fear rhetoric. Tone down the alarmism. It is not necessary to light anything blue to show support and love for an autistic individual.”

Tone it Down Taupe Sponsors iPad Giveaway in April- Radio Show with AWN Blogtalk Radio

During the month of April 2014, any donations I receive will be given to Tone it Down Taupe to help purchase another iPad, to be given to an Autistic adult. Tone it Down Taupe is doing iPad and Android mini scholarships. You can donate directly to them or send it here, since you are here anyway, and ALL the donations will be given to Tone It Down Taupe. If you designate your donation as a gift, more of the donation will go directly to the recipient.

This makes so much more sense than blue lightbulbs:

Light It Up Blue! Burn Money for Autism! 

Monday, March 17, 2014

Autism Acceptance Day 2014

Autism Acceptance Day and Month, 2014 Facebook Event

Autism Acceptance Day and Month continue in our fourth year. Interviews with Autistic people about Autism ACCEPTANCE will continue over the year. This resource of interviews will add to the growing body of accepting views of autism. Interviews will be published on the Autism Acceptance Day blog.


I will publish Autism Acceptance Day and Month events and activities that are sponsored and promoted by Autistics and allies and that are primarily Autistic-led. Some events and activities have stared using the word "acceptance" but have little Autistic input, payments to non-Autistics but not to Autistics, "treatments" and that sort of thing. Those can feel free to do what they want; they just won't appear here.

Autism Acceptance Day. Image by Amy Gould Caraballo, 2011

International Autism Acceptance Decade 2010-2020: Moving beyond Awareness. Image by Landon Bryce, 2013

Thursday, March 6, 2014

Making Investment Dollars off Autism

I read a tweet from Autism Speaks today. The blatant "cure autism" language is back. For a couple of years, Autism Speaks and their cronies (aka sponsors and investment partners) tried to pretend they were all about "acceptance." They were trying to copy ASAN, me, and the many Autistics and family members who are so very tired of the demoralizing and USELESS "cure" language that the media, under the influence of Autism Speaks, uses. Cure-oriented language saturates most conversations about us and wears down parents, Autistics, and everyone else.

Oh wait. Not everyone. Those looking to use autism as their investment opportunity, such as Google Ventures, WELCOME the idea of wiping autism (which is actually Autistic people, no matter how you try to sugarcoat it) off the face of the earth. (As I read this aloud to proofread, my son inserts a line from Star Wars: "Execute Order 66." Go search that if you don't get the allusion).

Google Ventures and Autism Speaks, and a number of business investment journals are all excited about the opportunity to cure us, while making big bucks at the same time.  This week is the "Autism Investment Conference 2014" and the media and investors are being really obvious about 1. their desire for money, and 2. the idea that autism needs to be cured. I am going to post some screen captures and label them when I can. While investors and developers compete for cash, I am working THREE part-time jobs trying to make ends meet, and I need to go back to work. I am partly: self-employed part-to-full-time (depending on the week and month), and two part-time jobs. One thing I will NOT do is try to make money off people with disabilities.

Robert Ring is the chief science officer of Autism Speaks and investment, not autism or Autistic people, is his forte and major concern. If I had 1/6 of what he makes in a year I would be able to pay off all my debts (won't go into that here) and save twenty additional years of work. BIG BUCKS off autism. I am tired of it. He is getting paid to tweet, by the way. I am not. 

People who want to make our lives easier with services and supports are competing for investment funds. I don't fault those people. I do fault the cure-oriented message behind Google Ventures and business journals' articles. Too bad the legitimate enterprises have to be mixed up with this unscrupulous group. From the article about Google: "In Google Inc.'s game of tackling big, knotty problems with data, there are few diseases meatier than autism." It makes me SICK. Autistic lives are not your "game," Google.

A tweet from Robert Ring @DrRobRingAS. The tweet says "How Google Ventures is looking to cure autism through data, investment" and then a link to an Upstart business journal article. The article's URL says "Google is going after autism through data, investment." The url, via DoNotLink is http://www.donotlink.com/eGn Under that is my response, and I am too tired to write it out here. Sorry

Image: Headline: "How Google Ventures is looking to cure autism through data, investment." I crossed out cure and wrote in ACCEPT. I also put one of those red "no" circles with a line through it across the picture.

This is a screen capture of the same photo, only as it appears on Autism Speaks' page dedicated to the keynote delivered by Google Ventures about "autism-related business opportunities."

And, Autism Speaks is still trying to cash in on Autism Acceptance, of all things. 


Tuesday, March 4, 2014

IACC Reauthorization- Stop Combating Me

NEW. StopCombatingMe blog: http://stopcombatingme.wordpress.com/

I have been working to counter the many glaring deficiencies in the "Combating" Autism Act since 2006. This blog post includes links to some of my testimony and writings, and the new #StopCombatingMe initiative of ASAN and BoycottAutismSpeaks.

This post will be updated over the next week. I have a phenomenal amount of work to do in other areas, so will need to come back and fill in many details. To start with, I will post the Autistic Self Advocacy Network's information about the "Combating" (NOT!) Autism Act Reauthorization. ASAN has been in forefront of IACC reform since its inception in 2006 and was the only organization that dared to counter the "devastating disorder" that was and still is the main focus of the IACC and NIMH. The Public Law 112-32, formerly 109-416, NEEDS TO CHANGE NOW. It's been too many years, and we STILL need a focus on supports and services.

Sign ASAN's action alert here: http://action.autisticadvocacy.org/p/dia/action3/common/public/?action_KEY=10412

Read more about the concerns Autistics and our friends and families have here:


 Factsheet from ASAN:  http://autisticadvocacy.org/wp-content/uploads/2014/03/ReformCAAFactSheet_r1.pdf

I will post links to all the meetings and my testimony when I get a chance. NOTE: I am only ONE of many many Autistics and family members who have grave concerns with the ongoing focus away from services and supports.

Comments I made SIX YEARS AGO (and I have been countering the "combating" problem, and the cure mentality, with barely any focus on what would help us NOW, for EIGHT YEARS. http://paulacdurbinwestbyautisticblog.blogspot.com/2009/11/iacc-commentary-march-14-2008.html

And this is from 2011. Do you notice a pattern? We have needed real, meaningful change for a long time now.
Oppose "Combating Autism Act" Re-Authorization (NOTE! This is from 2011 and not the current initiative!)

I attended and gave testimony at IACC meetings on the following dates:

March 14, 2008

May 12, 2008 http://autisticadvocacy.org/2008/11/comments-at-november-21-2008-iacc-meeting/

November 21, 2008 (invited presentation on ethical issues in autism research)

December 12, 2008

January 14, 2009 http://autisticadvocacy.org/2009/01/comments-at-january-14-2009-iacc-meeting/

February 4, 2009 http://autisticadvocacy.org/2009/02/comments-at-february-4-2009-iacc-meeting/

Note: The IACC Strategic Plan did not even address Augmentative and Alternative Communication! "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."

May 4, 2009 http://autisticadvocacy.org/2009/05/comments-at-may-4-2009-iacc-meeting/

Note: At the May 4 2009 meeting, the IACC finally had a presentation on AAC. See Feb. 4 for the motivation for that. 

"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."

invited participant in IACC Scientific Workshop, 2009 http://iacc.hhs.gov/events/2009/scientific_workshop/index.shtml

October 23, 2009 http://autisticadvocacy.org/2009/10/comments-at-october-23-2009-iacc-meeting/

November 10, 2009 http://autisticadvocacy.org/2009/11/comments-at-november-10-2009-iacc-meeting/

January 19, 2010

April 30, 2010

invited participant September 26, 2011 http://iacc.hhs.gov/non-iacc-events/2011/elsi-workshop-biosketches-sept26.shtml

Note- I just put in those dates from memory. Because I am awesome with "random numbers" like that.
One article I wrote concerning the IACC, with a focus on IACC members' insistence on "scientific research," which is a distortion of the actual law: "Public Law 109-416 Is Not Just about Scientific Research": Speaking Truth to Power at Interagency Autism Coordinating Committee Meetings

In addition please join Boycott Autism Speaks in a flashblog, #stopcombating me. Send your submission to info@boycottautismspeaks by March 11, 2014, by 12 pm EST, which is noon, USA East Coast Time.

Tell Congress to Reform the Combating Autism Act or let it expire. Twitter Bomb: March 6th Hashtag Everything #StopCombatingMe boycottautismspeaks.com

Flashblog: March 12th #SoptCombatingMe Email your submission to info@boycottautismspeaks.com by 3/11/14 @12 pm EST

Excellent images from Musings of an Aspie:  http://musingsofanaspie.com/2014/03/06/combat-this/

Sunday, February 23, 2014

Autism Speaks "Expert" Says Parents Waste Time Fighting Abuse and Restraint

An article and video came to my attention from NBC 4, Southern California (via DoNotLink):
Lawsuit Against School District Alleges Mistreatment of Child With Autism

"The parents of an 11-year-old boy with autism have filed a lawsuit against the Orange Unified School District on allegations of physical and psychological abuse."  GOOD FOR THEM. Too bad that parents have to fight, one by one, abuses that do occur in schools, some of which have caused DEATHS. For more on that read the detailed GAO report from a 2009 study here: Selected Cases of Death and GAO United States Government Accountability Office Testimony Before the Committee on Education and Labor, House of Representatives SECLUSIONS AND RESTRAINTS Abuse at Public and Private Schools and Treatment Centers . Why was the child is this case RESTRAINED BY TWO ADULTS FOR OVER 12 MINUTES? HE WAS CRYING. It makes ME want to cry.

Interestingly, and, NBC 4 Southern California, please do some FACT CHECKING before you tell parents that their lawsuits won't matter, Block-Nerren, rather than being any autism expert at all, is a marketer and owner at a media services company. FMS raises funds for Autism Speaks, which hardly qualifies one as an "autism expert." I am not sure why NBC wants to tout a theme that suggests that parents are wasting their time fighting abuses in school systems.

This is what the autism "expert" does- raises funds for Autism Speaks. After all that money (remember the 62 million?) that Autism Speaks raises, you would think they would get an expert who could quote law, cases, etc. No. Instead,"An autism expert says there are times when a child can be restrained, such as if they are posing a threat to themselves or to others." and then goes on to "reassure" parents: "According to autism expert [name deleted, why promote it] the legal battle the Ashlines are fighting won't help parents of other autistic children. "There’s this saying that if you’ve met one child with autism, you’ve met one child with autism. And the reason why is because all of our kids are different," ["autism expert"] said." What a downer. Especially for parents who are in the midst of more lawsuits than I can count against school systems where abuses have occurred.

Besides being one of the most inane things I have ever read about "why a lawsuit won't help," (really? Maybe Brown v. Board of Education should have been canceled because no two African Americans are alike?), it shows that people who are close to Autism Speaks, whether staff, or major volunteer-fundraisers (but not actual experts) are, typically, very negative about anything related to autism (other than fundraising). Parents have confided how discouraged they are with Autism Speaks, but to my knowledge, this is the first time one of their representatives has come out so strongly anti-parent. In my sector of the Autistic Community, we are used to Autism Speaks saying things like I am autism. I’m visible in your children, but if I can help it, I am invisible to you until it’s too late. I always thought that meant that Autism Speaks was throwing its weight behind parents, as though "parent" and "Autistic" were somehow diametrically opposed. They're not, but that's a topic for a different blog entry. Now, I am pretty sure that what Autism Speaks really supports is.... Autism Speaks. Look at the client list for Felten Media, and you see a whole lot of ... Autism Speaks. I decided to erase the names of a lot of the other clients, but am wondering if any of the law firms represented are the ones working for the Orange Unified School District. Why doesn't someone other than me follow up on that, please. (They might not be but it is something to wonder about...)

She should clearly stay out of discussing whether or not parents should exercise their rights under the Individuals with Disabilities Act (IDEA). Here's a site to get any parents reading this started. Note: I am doing this whilst also completing a work deadline so am providing one link to get people started: Abuse, Restraints and Seclusion in School.

Dear Autism Speaks "expert," Inappropriate restraints in schools: It happens all. the. time. If class action suits were permitted, it would happen A LOT LESS. Maryland General Assembly: Place the Burden of Proof on School Districts in IDEA Due Process Cases & Support Maryland's Most Vulnerable Children (www.burdenofproofmd.org) Julie Reiley Petition by Julie Reiley Bethesda, MD
Learn more about this legislation here: http://www.burdenofproofmd.org/

NOTE: I removed the name of the media services company. No point in giving them free advertising.

Another note: I removed the screen shot of the person because it was not necessary. At first I thought it would help explain something but it really does not.