Tuesday, December 2, 2014

Facebook Deactivation

I deactivated my FB account. I did not unfriend anyone. It is December. That is the busiest time of the year for me as a musician. I have concerts, recitals, choir things, extra rehearsals and performances. Since my Facebook page takes a lot of time as it is a quasi-public forum, I find that I do not have time for it at this point. Anyone who wants to get in touch with me may use my contact page here to do so.

Paula C. Durbin-Westby, singing!

One of the organs I play

Another organ I play

Another organ I play. I like to play the organ, a lot.

Me, standing in front of an organ and holding music. Photo by Natural Impressions. I gave a recital on this organ  December 5, 2014 

Thursday, November 13, 2014

Faith Hall's Death and Autistic Mental Health-Reaching Out to Media and Parents

When people are having mental health issues, they are supposed to summon up the courage to "reach out." I am doing that now.

I am reaching out to:

Dee Shepherd-Look, (and NBC writers who says "Frankly, I'm surprised it [murder] doesn't happen more often." http://www.donotlink.com/cg0x

I am reaching out to:

Emily Monicelli, at MLive, who titled an article: "Family says Vicksburg crash victim Faith Hall is "released" from autism, forgives driver for accident. I am also reaching out to Tammy Mills from MLive, who is removing comments because "this is not the time and place." Really? Don't use titles that make it sound liek we are better off dead, then. http://www.donotlink.com/cft9

I am reaching out to:

Marie Myung-OK Lee at Salon, who says "It’s only a matter of time before another child is killed, and we won’t even remember their names."  http://www.donotlink.com/cfqe

I am reaching out to Peter Holley, at the Washington Post, whose recent article made more than one Autistic person upset, including a college student who has worked hard to get where she is today, and whose father wrote about it in the comments section.

I am reaching out to you, and the myriad other media sources and commenters who relentlessly let us Autistics know, in increasingly vivid and dramatic fashion, that our lives aren't worth living. Even when non-autistic children get murdered, autism somehow ends up being the top element in news stories: Non-autistic Child Murdered, Autism Blamed

I will even put in a token "reach-out" to Autism $peaks, which has this to say about us:

"I am autism. I know no morality, no religion, no currency." http://autisticadvocacy.org/2009/09/horrific-autism-speaks-i-am-autism-ad-transcript/

I am reaching out to: Bob Wright (ok, that's a LONG reach), who says "You don't DIE from autism, you can have it for the rest of your LIFE."

Our population is prey to more than the usual amount of bullying, "teasing," inadequate education and educational supports, sexual assault, and, of course, murder. It looks like now we can't even be accorded the dignity to get into a car accident and be killed without our autism being trumpeted in the headlines. 

I have started to read, this past week, comments by Autistic people who are not only hurt, offended, insulted, dismayed, and outraged by the insistence of linking "death" of any type and "autism," but even some who, on some level, are reporting that they also feel like "it's not worth it." You know, LIFE. They report that they are feeling this way in response to your writings, media people and autism "experts." Do you care, one wonders? It certainly does not look like it. While I do not expect the media to care about people it writes about, I do expect some modicum of awareness from "autism experts" that we are reading the stuff you write and that it is making quite a few of us feel depressed and like giving up, in one way or another.

When I start hearing from my people that they feel more despair and hopelessness than usual, so that I start checking in with people to make sure they are OK, and the CAUSE of that despair and hopelessness is not actually "autism" but the constant negative, irresponsible, unempathetic, unsympathetic, damaging and even revolting portrayals of us and our autism, I need to reach out to those who are responsible for perpetuating this insensitivity and misinformation at our expense.

When I myself am standing in line at a coffee shop, and a fleeting thought comes into my mind "I should be dead....I don't belong here..... in this coffee line with the non-autistic people, in public...in the world...." because the news media says so, the "autism parents" who say that they are "all like K. Stapleton or D. Spourdalakis" (that is, murderers) say so, the comments sections (which I ought to know better than to read!) say so, the largest so-called "autism advocacy organization" says so, then I myself need to reach out. The report about Faith Hall's death being such a blessing to her family was what got to me as I stood in line waiting to get an espresso and hoping that would help with my media-and-murder-apologist-caused depression.*

I and my people have been asked time and time again to "look at the other side," as though there was "another side" in the murder of an innocent child. I and my people are called on, time and again, to "walk in the shoes" of a murderer or a parent of a disabled child (as though many of us are not parents of children with disabilities). We are asked time and again to put our own feelings about how we are represented in the media aside in favor of thought experiments about "what it would be like to be the murderer." We are told that, if we can write about our feelings, we are being "too sensitive" (so much for our lack of empathy, Dee Shepherd-Look et al.), and that, of course, we aren't "really" Autistic anyway. In a world in which all Autistic people and people with disabilities are in danger, these overt and implied attempts at silencing us contribute to an unsafe atmosphere for us all, including those of us who are in more danger if we not able to let others know that our lives and well-being are threatened. And now we are being asked to look the other way when a family says that their daughter is better off dead, even though "She really was a friend to everybody. ... She was obviously kind of quiet and reserved, but she just really had a tender heart and cared for others in her own unique way."

The media and people on the "other side" are quite vocal in their concern about the mental health of the murderer. It's time to consider the mental health of the people you malign. That is why I am reaching out to you, to insist that you:

Stop the verbal, emotional, and psychological abuse of Autistics, which harms our mental health and well-being, and leads others to devalue us, often resulting in damage to our physical well-being and even our lives. 

*Note: I am not in any danger of harming myself. That thought did pop into my head, and I have read similar thoughts from Autistic and disabled people in the wake of the current batch of media reports on violence against Autistics. I have a commitment to live as long as I can to counter the dismal material that counts as "autism expertise," so any self-deprecating thoughts that come into my head as a result of the constant injurious depictions of Autistics will be resisted by me. Still, it is very wearing. It makes me depressed. Please note further: autism is not making me depressed; it's the constant damaging comments that amount to emotional abuse of me and my people. Please do not pester me with comments asking if I am "OK." I am not "OK," when it comes to thinking about the daily erosion of self-esteem that is the lot of Autistics and families who have to endure decades of negative media hype about us. 

For disabled people who may be in harm's way, and for caregivers who are concerned that they might harm someone: 

Image is from MLive's article entitled "Family says Vicksburg crash victim Faith Hall is 'release' from autism, forgives driver for accident. Tammy Mills of MLive says "There is a time and place for discussing the impact of such statements, but this is not it." I have added language to the image "MLive tries to silence Autistics, supporters, and family members who have a legitimate concern about the title and slant of the article about the death of Faith Hall. This concern for the family friend obviously trumps any emotional damage Autistics and our families suffer from media irresponsibility and offensiveness. Change the title and slant and you won't get the "critical" comments."


I am not  "reaching" out to the people who have come up with the (trying to come up with a synonym for "evil" here) "documentary" called Who Killed Alex Spourdalakis? because those people are beyond reasoning.

Wednesday, November 5, 2014

Murder of London McCabe, Age Six

It is with a heavy heart and much anger that I report yet another murder of one of our people. Six-year old London McCabe was murdered at the hands of a relative. I have stopped calling these murderers by any sort of parental or familial name. When you murder your child or family member, you stop being a family member. When you murder someone under your care who is dependent on you, you don't get to be called "caregiver" any more. One of our people refers to belonging MORE to the Autistic and disabled community than to a murderous family member. This does NOT dismiss those family or community members who would never have wanted the murder and would have done anything in their power to stop it. It does mean that the murdered person ALSO belonged to the community of disabled people, even if that person was not aware of our (non-monolithic, by the way) community.

News media, including NBC, has the usual "both sides" stories. As though there was a legitimate "other side" consisting of people who would murder their children or are planning to, and that "we" should give "equal time" to those people. They certainly should have enough airtime to be exposed as people who need to be monitored closely, but they don't need their views to be "equal." When someone is murdered because of their race, ethnicity, or sexual orientation, do we give "equal time" to racist supremacists, anti-gay fanatics, or other "justifiers?" No, we do not. At least not in supposedly professional "mainstream media." (Bloggers can, of course, write what they want, and those who support and justify murders need to be watched closely for signs that they are about to commit crimes.)

"Expert" Dee Shepherd-Look was dug up from somewhere by NBC and has this nugget of "truth" (because she's an expert....) "These children are really unable to be in a reciprocal relationship and the moms don’t really experience the love that comes back from a child — the bonding is mitigated." Really? Because PARENTING IS NEVER RECIPROCAL. Newborns don't reciprocate. They cry and need their diapers changed and eat every twenty minutes. Not exactly reciprocal love. SIX-YEAR-OLDS, which London was, whine and beg for candy at the store, even when you are exhausted from whatever else has gone on in your day. They might say "I love you" or not. Their needs come first, especially THEIR NEED FOR SAFETY AND PROTECTION AT AGE SIX. Teens- reciprocating? Sure, but not all the time. Sometimes they are TOO clingy, which is NOT reciprocal. Most teens are not all about "Did I reciprocate enough with my parent?" London will never get to BE a teen. People in their twenties and thirties? They are living their own lives. For a parent who has a grip on what raising a child means throughout the lifespan (a lifespan that London McCabe will never get to experience), the GOAL is to have the person NOT reciprocating all the time. Or even any of the time in some cases. PARENTING IS NOT RECIPROCAL AT ANY AGE. This is not earth-shattering news. Sure parents feel hurt, rejected, even despised at times, depending on the age of the child, the situation, the context, the need for distance.

A number of blog posts have been written in the wake of Shepherd-Look's questionable portrayal of Autistics: A Defense Against Libel

I am DONE with excuses for murder, asking me to "walk in the shoes" of some "mom" who has killed her kid. But before I was finally and completely done with thinking about walking in the shoes of a murderer....

I tried imagining the murderer in the case of London McCabe, because I thought "Gosh, I should actually try this instead of always countering it like I did with Alex Spoudalakis (age 14, brutally murdered including almost hacking off his hand) or Issy Stapleton (attempted murder by charcola burner in car, which she survived). So, I imagined being in the room with the person who murdered London McCabe, and..... I am a very visual thinker, so can easily imagine being right there. And.... what I felt most was that I wanted to punch her. I did not feel this about the other murderers, because I did not try. And won't. I don't want to feel that aggressive about anyone. I can't murder anyone, I can't even feel comfortable wanting to punch a murderer. So sorry, people who want me to "walk in their shoes." I then tried imagining being her and holding a child, even MY child, over the edge. I could also NOT DO THIS because EVERY CELL IN MY BODY would be trying to SAVE MY CHILD not KILL him. This made me feel very frightened and disoriented and wanting to cry and scream. I could not because my child is in the other room and he would want to know what is going on. I did not get as far as imagining letting go of the small hand (Or whatever body part) that would allow my child to plummet to an icy death below. Recently I lost health care access and so access to anxiety medications, but I managed to save a few for difficult times. After doing this thought experiment, and having to go out and conduct a rehearsal tonight, it might be one of those times, as I am still shaky.

I COULD, however, imagine dangling from a bridge and how it would feel to hit water 130 feet below (like hitting concrete) and then drowning slowly. What that made me feel was: frightened, sort of like I could not breathe, cold, and shaking. There. Now those who want to suggest walking in someone else's shoes? Be sure you take that walk yourself- imagine yourself hitting water after accelerating at 32 feet per second per second for 130 feet.

So much for asking me to imagine being a murderer. I will NOT ever try this again, but will go back to JUDGING murderers (but not hating them, actually. Hate is another matter altogether, and hate and negative judgment are not always linked) and countering people who make excuses for the murders or people with disabilities.

London McCabe, age 6, murdered by dropping him off a 130-foot bridge into icy water. Yet, "expert" Dee Shepherd-Look whines about "the moms" [sic] and how they don't get "reciprocal" love. Guess what. PARENTING IS NOT ALWAYS RECIPROCAL FOR ANYONE, MS. "EXPERT."



London McCabe was a wanted child

Comments on the murder of London McCabe by Zoe Gross


Have someone you are afraid might be plotting to kill you? Have concerns about yourself maybe hurting or killing someone? Some resources are here. Not an exhaustive list but might help prevent the worst kind of harm. http://tool-kit-autistic-alternative.blogspot.com/

*Included in being "DONE with excuses for murder, asking me to "walk in the shoes" of some "mom" who has killed her kid," as I said above, I will not be posting comments that then ask me to make excuses for murder for one reason or another, including "I don't approve of what she did, but....". I just won't.

Many people notice the stark difference between the media and "comment section" treatment of murdered Autistics and people with disabilities, and murders where the neurology of the child is "typical" (or presumed to be). An excellent post about this topic is here, comparing the murder of London McCabe and that of Scott McMillan, reported two days later. NOTE: The blog post links to some graphic descriptions. A Tale of Two Murders

Image of London McCabe wearing a hat. Text says "Belssed Be, London McCabe. 2008-2014. NO MORE AUTISM FILICDE

Image of London McCabe holding toy helicopter. Text is #JusticeForLondon

Tuesday, September 30, 2014

Copycat Murders a Concern for Autistics, Most Parents

AMC Theatres is now showing "Who Killed Alex Spourdalakis." The date I notice is October 16 in Dallas at AMC NorthPark 8687 Central Expy 300 Dallas Texas 75225. Does anyone want to organize a protest at the showing? I am not in Dallas or I would be out there with some literature to hand out. This showing does no good, except it makes money for AMC and allows people who want to sidestep the fact that a murder was premeditate and committed to have a very public, national venue in which to (even if unintended) put the idea into people's minds that so-called "mercy-killings" and "angel in heaven" stuff is not as bad as heinous. 

Note: The original press release for this "documentary" was September 1, 2913. K. Stapleton attempted to murder Issy Stapleton on September 3, 2013, two days after the press release. 

Sept. 1, 2013 Press Release of "Who Killed Alex Spourdalakis?"

September 3, 2013 news reporting attempted murder of Issy Stapleton

Do you think this is just coincidence? It might be, of course. Then again, it might not. I am very concerned for my people, and all people with disabilities.

Contact AMC here: https://www.amctheatres.com/contact/feedback

I wrote this to AMC THeatres: I am writing to express my concern about the film called "Who Killed Alex Spourdalakis?" to be shown at Dallas AMC NorthPark 15 on October 16. The video is a thinly-disguised attempt to justify the murder of Alex Spourdalakis by his mother, which included multiple stabbings and  almost severing his hand. seem to be trying to influence the outcome of a murder trial. Since there seem to be some copycat murder attempts shortly after murders of a person with a disability get a lot of media attention, showing this film, which blames the disability and focuses away from the premeditated murder, may be dangerous for those of us with disabilities.  Please reconsider showing this ”documentary.”  

The pre-release of the film was posted on numerous websites that announce upcoming films. Two days later, K. Stapleton attempted to murder Issy Stapleton. With each fresh murder or murder attempt, a bevy of what are sometimes called "supporters" join forces to try to make us "understand" and feel "compassion" for the murderer, not the victim. Some of these people are concerned for themselves, about murdering their own children or people under their care. While attention is needed to the very serious issue of murders of people with disabilities, showing a film that derails the conversation by blaming vaccines, autism, "lack of services" and everything other than the murderer is DANGEROUS for people with disabilities. I have not seen one person write in comment sections on various articles or sites* "Wow, after watching this film, I realized that there is no way I would ever kill my child. I was concerned about myself initially, but now I stand with those who condemn murder." That would be something. That is not what is happening, though.

* (including the Dr. Phil show, which had as one of its effects an attempt to suggest that K. Stapleton not serve time for attempted murder) NOT ONE that I notice

The "Who Killed Alex Spourdalakis (Answer: His Mother)" film is not a documentary offering a "glimpse" into autism or into the workings of the mind of murderers. Instead, the film suggests that "lack of services" leads to the murders of people with disabilities. In news reports after the murder, it appears that the murderers actually turned down services that were offered. The article and the forthcoming video (if it is ever completed) attempt to justify the heinous murder of Alex Spourdalakis, which included multiple stabbings and  almost severing his hand. In fact, the filmmakers, perhaps in collaboration with CBS, seem to be trying to influence the outcome of a murder trial. This "excuse" for murder would never be tolerated in any other circumstance, even difficult circumstances such as poverty. It is not tolerated now, by our community, that of Autistic people, our parents, families, friends, and communities. 

From my previous post on this topic: 

Typically, conspiracy theories, including films, appear after a verdict has been given or when some information is missing, or a person is missing. In this case, CBS and the filmmaker engage in conspiracy tactics before the outcome of the case, and with full information about how the murder was done (pills and knife), where, and how long it might have taken for Alex to die after having been repeatedly stabbed and his hand almost hacked off. There is no "whodunnit" here.

Commentary on the "documentary" by Autistic advocates and parents of Autistic children: 

It is Now OK to Kill Your Child

Whitewashing the Brutal Murder of Alex Spourdalakis

CBS Provides Glimpse into "Documentary" Defending Autistic Teen Alex Spourdalakis' Killers 

Sharyl Attkisson and CBS News: Lying by omission about the murder of autistic teen Alex Spourdalakis

Alex Spourdalakis running, when he was alive
Issy Stapleton

Saturday, September 13, 2014

K. Stapleton Murder Update- Justice for Issy

K. Stapleton, who is being held without bail and faces a life sentence for attempting to murder her Autistic daughter, is getting a day of celebrity on the Dr. Phil show on Monday September 15. The following day, September 16, the program will continue.

On Monday and Tuesday, people will use Twitter to let @DrPhil and his audience know that Issy Stapleton is the victim, not the person who tried to murder her. On Facebook the event for this initiative is Tell Doctor Phil and the Media that Issy Stapleton is the VICTIM. The event organizers write:  "When the media reports on cases of violence and abuse against Disabled individuals, we MUST hold them accountable to telling these stories with respect to the actual victims of these crimes. Our lives matter!  When a Disabled person is the victim of a violent crime, we must not allow the media to talk about "lack of services", or the "burden" of what it is like to care for us. This is the rhetoric of fear, of hate, and victim blaming. That is unacceptable." Please use the hashtag #JusticeForIssy in your tweets and posts.

The blurb for Tuesday's Dr. Phil show reads "Dr. Phil continues his exclusive jailhouse interview with Kelli Stapleton, a mother accused of trying to kill herself and her severely autistic 14-year-old daughter, Issy. Kelli recently pleaded guilty to a felony charge of first-degree child abuse. Does she regret her actions that day? And, hear from Kelli’s best friends. Were there any warning signs that Kelli was reaching her breaking point? Then, another mom, Lisa, says she knows Kelli’s pain all too well. She says her autistic son is extremely violent, and she says she contemplated a similar tragic scenario for herself and her son. Plus, find out how you can help Issy secure a healthy and productive future."

I can tell you how to "help secure a healthy and productive future" for Issy and all disabled people who rely on parents or other caregivers, Dr. Phil:

Don't give any positive attention to would-be murderers. Don't call autism a "jail" just because K. Stapleton does. Be respectful in your descriptions of autism and other disabilities. We Autistics are watching. Don't hurt us with your comments. We won't be safe if we are talked about in a way that makes people think we are barely worthy of life. There's NO "future" for some of us if parents and other caregivers get the idea that we really don't deserve to exist. Interview people other than the attacker's friends. Interview Autistic people. Confront/question members of the audience attending the show who might "take the side" of K. Stapleton. Make sure to condemn murder and call for the maximum penalty so that copycat murders do not occur in the wake of your show. Direct your audience to the Tool Kit of Resources from the Autistic Community or similar resources.

I can only hope that Dr. Phil or some of those who are interviewed will come out strongly against K. Stapleton and in defense of Issy and all disabled people's right to our own lives. 

Note: I only used Stapleton's first name in order to make this post accessible in search engines. I would prefer to not use her first name: many people have pointed out that she gets called by her first name, almost as if everyone is on an intimate basis with her (especially people who pressure those of us who condemn the murder attempt to walk in her shoes) while Issy's name is often not even used. Let us remember who the real victim is here: Issy Stapleton. I am sorry that this mother made this choice, but no excuses for murder/attempted murder of another human being are acceptable. (Shortended link for the post is http://bit.ly/1quEJxI).

The "understanding" that is being called for is often a thinly disguised plea to "go easy on her." The disabled community cannot afford to do that, when one compares the dialogue around the murders of people with disabilities to other murders. Calls for understanding the murderer are part and parcel of any discussion about the murder of a disabled person. This focus on the "humanity of the murderer" rarely happens in other murder settings. Because of this pervasive societal attitude, tipped toward dismissing our lives in a very concrete way, disabled people are in harm's way, all of the time. Many of us are at the mercy of family or other caregivers. A strong stance against violence against us must be maintained in order to counter the tendency to see our lives as not worth living.

For anyone who is concerned that they or someone they know might murder a disabled family member, please look at the Tool Kit of Resources from the Autistic Community which has information and links that can be helpful. Remember, murder is NOT really your "only option."

Short link for this post is http://bit.ly/1q13Gut

Issy Stapleton

Image says #disabilityisnotacrime #JusticeForIssy #OurLivesMatter This image is from the Facebook event linked above.

Related posts:

Petition for maximum sentence:

Changing Conversations: When Parents Murder Disabled Children



I will come back and do more links later. Very tired with reading and writing about this. Please post your appropriate, non-supportive of murder links in the comments section.

Monday, September 8, 2014

Citizen Autistic-New Film Release

Citizen Autistic by William Davenport will be released as a DVD on September 9 2014. That's tomorrow, from my vantage point here on the 8th at 3:03 am. :)

"Citizen Autistic offers an inside look at the activists on the frontlines of the autism war the fight for human rights and self-advocacy. Featuring interviews with Ari Ne'eman, President of the Autistic Self Advocacy Network, Landon Bryce, founder of thAutcast.com, artist Robyn Steward, Clarissa Kripke, MD, and activist Zoe Gross, who discuss how Autism Speaks, one of the largest organizations in America, relies on propaganda to raise funds for genetic research without considering families touched by autism. Directed by William Davenport (Too Sane for this World), Citizen Autistic seeks to expose the controversies provoked by the organization's so-called advocacy by giving voice to some of the most articulate members of the communities it claims to represent."

The film also interviews Melody Latimer, Shannon Des Roches Rosa and Paula C. Durbin-Westby. A few people in the film I don't know (or don't recognize!). I will add their names once I learn or re-learn who they are.

This is one autism documentary I like. I am not saying this because I am in it, because we all know that I don't necessarily like films that I am in. I was initially not interested in being in another film but when I saw the material that had been done so far, I realized that this was a project I in which I could safely be involved and contribute something that I hope will help make the world a better place for Autistic people.

Reasons I like Citizen Autistic include:

- The film lets Autistics speak for ourselves, saying what we want to say.
- The people interviewed get a chance to fully talk about their views without being editorialized.
- We are not accompanied by creepy music.
- Our words are not taken out of context. Any additional material in the segments enhances what the Autistic person is saying rather than "mitigating" the effect of our sometimes rather strong words.
- Promotional material is respectful- it does not create a nonexistent story line, nor capitalize on the interviewees in a way that calls our words and our lives into question.
-The film dares to (finally!) counter Autism Speaks' anti-Autistic rhetoric, and it counters the Judge Rotenberg Center's atrocities.

Who else is doing this cutting-edge, difficult, no-holds-barred activism work in documentary version right now?! No one that I know of. Please support Citizen Autistic by buying the film if you can, or by promoting it on your social media. An indiegogo fundraiser for the film is here: https://www.indiegogo.com/projects/support-citizen-autistic-screening-tour

Citizen Autistic Trailer is here.

Autism Speaks Walk - San Jose.. (Citizen Autistic excerpt) interview with Zoe Gross

DC Autism Speaks Walk - Citizen Autistic Excerpt...

TRIGGER WARNING for murder of people with disabilities: Vigil - Citizen Autistic Excerpt... interview with Lydia Brown

TRIGGER WARNING- includes JRC Torture Video: "The Judge - Citizen Autistic Excerpt..." Interviews with Ari Ne'eman and Clarissa Kripke

Gay Rights - Citizen Autistic Excerpt...

This is an image of the beginning of the film. It does NOT lead to a link to view the film. The images is a black background with white lettering that says "CITIZEN AUTISTIC" and below that "The Judge-Citizen Autistic Excerpt. by William Davenport."

Image has CITIZEN  AUTISTIC at the top, a person wearing a green hat ("apple green?"), with headphones and buttons holding a sign that says "I am NOT a puzzle, I am a person," with a blue puzzle piece crossed out in a red circle.

Friday, August 1, 2014

Flawed Fein Autism Study- "Optimal Outcome" Ignores Actual Autism

The New York Times published an article with the title The Kids Who Beat Autism. I do not have time to dissect the article bit by bit, because I am busy trying to function in a world that demands that I appear "indistinguishable" from non-autistics, who certainly are NOT my "peers."

An important post about the idea of "optimal" and the effects of the pressure of that on Autistics can be found here: The unrecovered.

What I will do is post some quotes from the article itself that show that, yes, these young adults and teens are still Autistic, that is, still on the autism spectrum. I am talking about autism itself, which is a pervasive developmental disability, not whether or not some researcher or therapist has pronounced the person "symptom-free." Note that the non-autistic researchers try to have their cake and eat it too, claiming both that the person is now completely non-autistic yet at the same time has "residual symptoms." Hello. The "symptoms" aren't "residual" any more than "side effects" of medications aren't actual effects.

"By then, it had been three years since a specialist concluded that despite some lingering social deficits, Mark no longer met the criteria for autism."

"Fein’s study found that formerly [sic] autistic people often have residual symptoms, at least initially; these include social awkwardness, attention deficit hyperactivity disorder, repetitive movement, mild perseverative interests and subtle difficulties in explaining cause and effect. For Mark, the main remnant is his continued disgust at food that he considers slimy, like omelets, and his dislike for the texture of paper, which he avoids."

"Mild echoes from his autistic days remain. He told me that he still can’t stand wearing tight or stiff clothes, so he opts for sweatpants or loose khakis instead of jeans. And even though he’s a jokester himself, by his own reckoning he still occasionally has difficulty figuring out when someone else is kidding."

"When Matt is by himself watching an exciting game on TV, Laurie sometimes passes by and sees him flap his hands. “It just seems like a leftover from the autism.

"...although he battled A.D.H.D. and occasional social anxiety..."  

Important for any parents reading this:

"[Ari] Ne’eman says society’s effort to squelch autism parallels its historical effort to suppress homosexuality — and is equally detrimental. He points out that in the 1960s and ‘70s, Lovaas’s team used A.B.A. on boys with “deviant sex-role behaviors,” including a 4-year-old boy whom Lovaas called Kraig, with a “swishy” gait and an aversion to “masculine activities.” Lovaas rewarded “masculine” behavior and punished “feminine” behavior. He considered the treatment a success when the boy looked “indistinguishable” from his peers. Years later, Kraig came out as gay, and at 38 he committed suicide; his family blamed the treatment."

Back to quotes from the article.

"I asked him if there was anything he missed about being autistic. “I miss the excitement,” he said. “When I was little, pretty often I was the happiest a person could be. It was the ultimate joy, this rush in your entire body, and you can’t contain it. That went away when my sister started teasing me and I realized flapping wasn’t really acceptable. Listening to really good music is the main time I feel that joy now. I still feel it in my whole body, but I don’t outwardly react to it like I used to.”

Too bad he traded the joy in for "indistiguishability." It's his choice of course, at least now that he is an adult, but I think the idea that we can "recover" from autism is going to make a lot more parents push their children to trade joy for a pseudo-normalcy they (we) can't ever quite attain. To most people I "look" typical. Then they get to know me. Most of them keep their distance once they sense (even if they don't know) that I am not quite like them.

To the parents who did not tell their son he was Autistic until he was 12 or 13- you don't tell a young teen anything about themselves that has the potential of completely changing their self-perception. The early teen years used to be a typical age to draw adopted children aside and say, in grave tones, "Son/daughter, there's something we need to tell you." It has had devastating effects on some people. Read the literature by LDA's (Late Discovery Adoptees)* and learn something. You don't disclose something that will change their entire perception of themselves to a middle-schooler! Tell them when they are babies, tell them again when they are toddlers, tell them when they are in elementary school, and please don't make a big neurotypical drama out of it.

I wish all of the young people in this article well in their lives. Let no one define YOUR "optimal outcome" for YOU.

For a more complete analysis of concerns about this study, read ASAN's statement, drafted by Research Committee Chair Steven Kapp.

ASAN Statement on Fein Study on Autism and “Recovery”

"Indeed, the study failed to investigate executive functioning, mental health, academics, or even the current nonsocial behaviors of ASD. It allowed the youth paraded as “optimal outcomes” and the “typically developing” control group to be disabled in any of these and other areas. The authors’ failure to measure distress or specifically report current restricted, repetitive behavior and interests (RRBIs)  are alarming, given that solid measures included in the study cover these areas. The lack of attention to RRBIs is even more concerning given not only their inclusion in the ASD diagnosis, but also that the study reported on RRBIs for all Autistic participants as young children. In fact, the supposedly “optimal” individuals had comparable RRBI scores to the other Autistics. The authors even acknowledge that across the lifespan, Autistics tend to appear more socially typical over time, while RRBIs remain much more obvious."

*LDA reference. Look at the parallels with the way Autistics are "normalized" and encouraged to give up JOY because it will cut down on the teasing. From an article on Late Discovery Adoption:

"In the structure of the LDA's family, the lie serves to protect and cover the perceived shameful "abnormality" of adoption. LDA families appear "normal", and the entire family, the LDA included, is presumed to benefit from this normality, in comparison with other adoptive families. Some family members reap more of this alleged benefit than others, however." http://www.adopting.org/LDA.html