Parenting, testing, disability, autism

In a recent comment on an older post of Kristina Chew’s, “Eugenics, Fear, and Pain” over at Change.org, one parent says:

I found out three days ago both of my children are positive for the PTEN mutation. There is a link between PTEN and autism. I think it’s that one in every 5 people with the mutation have autism–very strong odds. I opted for genetic testing with my son. The triple screen came back very abnormal. He had 1:6 odds of Down Syndrome. I opted out of an amnio. I’m glad I did because he did not have Down’s and I’m unsure they could have told me if he had the PTEN mutation. Since only 1 in 250,000 people have this mutation I highly doubt he would have been checked for it. I didn’t know I had the mutation until 2007 even though I had every sign there is–just no name. We did not do genetic testing with our daughter. I guess the point of this is sometimes problems exist that aren’t detected. No one is guaranteed what society sees as a “perfect” child. My daughter was placed on the PDD spectrum before her second birthday. We didn’t understand the link at the time as this was around the same time as my PTEN diagnosis. She’s so beautiful and smart. The only problem is reaching her through language sometimes but intervention is changing that. Last night she was speaking to me quickly as she does and I didn’t understand her. I slowed her down and BOOM there was meaning. It’s frustrating for her in not being able to get her point across easily but she’s making great strides.

I just cannot fathom anyone not thinking my child’s life is worth it. As someone who has been through 24 operations and 3 diagnoses of cancer by age 30, my quality of life hasn’t been the greatest. My own father once said if he had known what I would go through he wouldn’t be sure he and mom would have had me. I cannot begin to explain how painful that was.

Institutional Dehumanization

Sometimes, in our current discussions of human variation in the age of genetic manipulation, it is easy to forget the central role of the environment  in shaping human behaviour. This video from United Nations Television provides a powerful example of institutional dehumanization and of the power of families and communities to overcome dehumanization.

A transcript follows the cut.

The Dark End of the Spectrum

In June 2008 the radio program Ideas from the Canadian Broadcasting Corporation (CBC) aired a program titled “The Dark End of the Spectrum.”  The two part program is an investigation and synopsis of autism.  The original summary is below. Links to both parts are below the fold.

First seen as a medical oddity, autism has a fascinating and troubling story. Bernice Landry takes us from the heyday of psychoanalysis, to the blame-the-mother era, the rise of the activist parent, and the decoding of the dark secrets of our genes. For Rain Man it was numbers; for Darius McCollum, it was the New York City subway. Meet the man whose compulsion to steal trains had cost him years in jail long before he ever heard about autism.

An “Outbreak” of Autism?

The New York Times reported yesterday on an ongoing epidemiological survey into a clustering of autism cases among Somali families in Minnesota.  Given such a clustering there are a number of possibilities that might be true, among them:

1. It is a statistical fluke.
2. It is the result of misplaced pattern recognition, similar to seeing faces in clouds or patterns in the bombs dropped on London in WWII.
3. There really is a significant statistical difference among Minnesotan Somali families.

Of course figuring out which of these is really the case will certainly not be easy for the investigators.  As the article points out, the process of diagnosing autism is less that ideal and since there is no known cause the investigation cannot be as targeted as anyone might hope.  Additional complexities, like the involvement of anti-vaccine advocates and the possibilities of racially biased diagnoses further muddy the waters.

If you would like to read the article, you can find it here.

If you are interested in reading more about what is being seen by some as an “autism epidemic” then you might also want to look here.

Think Differently About Autism

From the National Autistic Society, in the UK, a short video on bullying, Asperger Syndrome, and what it’s like; h/t to Asperger Square 8. The video forms part of the NAS’s I Exist and Think Differently about Autism campaigns, which have been ongoing for the past year or so.

Description of video, partial transcript, and further information and links beneath the fold.

We stand for …

This is a great video created by DeedeeMom, and shown on his YouTube channel. It was created for the YouTube “What do you stand for?” competition in 2007.

The video is short; it has music in the background but no talking and all the text is fully displayed. The text in the video reads:

NY Times article: This Journey Began Before Starting Line

Photo of Nadine McNeil embracing her 18-year-old son, Tyler.  Nadine McNeil will compete in her fourth marathon, but it will be the first for Tyler.  Photo by Rob Bennett for the New York Times

By CHARLES WILSON

Published: October 31, 2008

Nadine McNeil will reach the crest of the Verrazano-Narrows Bridge on her handcycle soon after 7:30 Sunday morning. Moments later, she will roll swiftly past her 18-year-old son, Tyler, who is autistic. This will be her fourth marathon, and Tyler’s first. She has grown uneasy this week thinking of the moment when she will leave him behind.  “I can’t look back,” she said. “For 18 years, I’ve always known every moment where Tyler is. On Sunday, I won’t.”

Though joint parent-child appearances in the New York City Marathon are not uncommon — Rod Dixon, the race’s 1983 champion, is returning this year to run the race with his daughter — the path that brought Nadine, 42, and Tyler to the marathon is an unlikely one. Nadine had a stroke when she was 8 and lost the use of her right arm and her right leg. Tyler, her only child, is severely speech-delayed. Even now at 6 feet 4 inches, he communicates verbally by using one or two words at a time.

Nadine has poured her life into her son. Tyler, in turn, is what she calls “my right arm.” He compensates for her disabilities by tying her shoes. He does her buttons and zippers. If she tries to put on her coat, he will immediately rush to her side and gently lift her right arm into the sleeve.  Neither would have ever made it to this year’s starting line without the other.  Read the entire article here: http://www.nytimes.com/2008/11/01/sports/othersports/01marathon.html?th&emc=th

CFP: Special Issue of Disability Studies Quarterly on Autism

Submission deadline: Jan. 1 2009
Projected publication date: Summer 2010

Co-editors: Emily Thornton Savarese, University of Iowa, and Ralph James Savarese, Grinnell College

We are looking for completed articles, from a disability studies perspective, on what the medical community refers to as ASD (Autism Spectrum Disorder). We are especially interested in pieces that engage the so-called “low-functioning” end of the spectrum, where increasingly those presumed retarded and lacking social awareness are writing back to the empire of science. As the field of disability studies has theorized cognitive difference, it has had to refine its cherished social-constructionist approach, making sure to account for physiological distinctiveness in the organ of sensibility, a distinctiveness that has been interpreted in a myriad of ways, most quite prejudicial. We are interested in the burgeoning neurodiversity movement, which has self-consciously resisted such prejudicial interpretations, often revealing the “science” of autism to be anything but reliable and objective. How to talk about autistic difference? How to represent it? How to convey its gifts and challenges? Who can talk about it? What role should parents play in this representational arena? What role should teachers, doctors, researchers, therapists, media entities, and academics play? What kind of interdisciplinary approaches are needed to understand, respect, and even cherish autism?

Victims of Violence with Autism

Recent murders, violence, and abuse of children and adults with autism or Asperger syndrome are an incredibly disturbing trend. The following cases are only a sample of the many cases reported within the last month:

19 September 2008 – Margate, FL, USA NBC6 News reports that two men were arrested in connection with a sexual assault of “an autistic girl.”

About How We Talk About Autism

I was able to make it into New York last night and hear philosopher Ian Hacking give his keynote speech on How We Talk About Autism, for the Stony Brook University conference on Cognitive Disability: A Challenge to Moral Philosophy. Some reflections on Professor Hacking’s lecture are here—-the lecture has kind of “jump-started” my thinking for my book on language and neurodiversity.

Savage Language

If you haven’t read what talk show host Michael Savage thinks about autistic children (99% of whom he says are misdiagnosed), go here.

If you haven’t read his attempt to explain himself, go here. Savage cites his own experience seeing his “severely disabled” sibling die in a “‘snake-pit’ of a ‘mental hospital'” New York as why he “[knows] first-hand what true disability is.”

This is my suggestion for providing him with a little autism education. And then things got even more interesting when I brought up a recent use of the word “retarded” by another mother of a disabled child.

Maybe sticks and stones don’t break my bones, but names—but words—can really, really hurt and miss the mark entirely.

Restraints and Rights

Today’s New York Times reports on what may be an increase in the use of restraints on children—-with behavior problems, ADHD, autism—-in public schools in America, where there’s less oversight about such abuses than for psychiatric hospitals and in nursing homes. I would have thought the kinds of practices—holding a student down prone on the floor, for one thing—-were the stuff of some benighted Victorian past. But physical restraints were repeatedly used on my own son in a New Jersey town we used to live in, and without the school district telling us that this would occur, as I wrote about in a post today. And in Bedfordshire, in the UK, a family may have their 12-year-old autistic son, Ben Haslam, taken into care by the Local Education Authority, following a dispute about what the appropriate education is for the child. He’s currently in a school where, after a lot of trouble, he’s doing really well.

Both cases highlight how little people take into account the perspective, and the feelings, of disabled children and especially children with limited communication. Of course my son didn’t like—was terrified—when he was physically restrained with his arms twisted behind him—-but he wasn’t even able to say “no” or “stop it.” Ben Haslam does not talk, but you can tell from watching a newscast that his current school has helped him tremendously, that he’s learning and interested.

More onrestraints and aversives used on autistic children here—yes, this is happening in America today, to disabled children. What sorts of people call this “education”?

Excluded: Sorry, it’s not your right

Recently there’s been one story after the next in the news about an autistic child, and about special needs children, being removed (physically, in some cases) from public spaces: A Minnesota church, more than one airplane, a kindergarten classroom. I’ve followed many of these cases on my autism weblog and the discussions that have emerged have often gotten long, and been more than heated—-they’ve been full of vitriol, hostility and disgust that parents of disabled children have so little regard for others’ safety and are, indeed, so seemingly careless of the needs of others.

Parents of disabled children do care very much; indeed they may be the most sensitive of all to how strangers feel when a child “misbehaves” in public. But being parents of kids who often don’t get understood, we have to take care—to advocate—for our kids. Experience has shown me that, at the end of the day, if my husband Jim and I don’t stand up for Charlie, people just walk by. In May, I wrote a post entitled Excluded: On Keeping the Faith about the daily advocacy a parent of a disabled child, and one’s disabled child, find themselves performing everyone we step into a public place and I’m reposting it here.

Independence and Dependence

The 4th of July holiday in the US gets me thinking about what independence means, and the importance—the necessary—of acknowledging how much we need each other. And about fingernails—–you’ll see why at Autism Vox.

Is There Really an Autism Epidemic? A closer look at the statistics suggests something more than a simple rise in incidence

By Scott O. Lilienfeld and Hal Arkowitz, Scientific American December 2007

If the statistic “one in 166” has a familiar ring, perhaps that’s because you recently heard it on a television commercial or read it in a magazine. According to widely publicized estimates, one in 166 is now the proportion of children who suffer from autism. This proportion is astonishingly high compared with the figure of one in 2,500 that autism researchers had accepted for decades. Across a mere 10-year period—1993 to 2003—statistics from the U.S. Department of Education revealed a 657 percent increase in the nationwide rate of autism.

Not surprisingly, these bewildering increases have led many researchers and educators to refer to an “autism epidemic.” Representative Dan Burton of Indiana also declared in 2001 that “we have an epidemic on our hands.” But what’s really going on? {read more}

The Truth About Autism: Scientists Reconsider What They Think They Know

By David Wolman, WIRED MAGAZINE: 16.03

The YouTube clip opens with a woman facing away from the camera, rocking back and forth, flapping her hands awkwardly, and emitting an eerie hum. She then performs strange repetitive behaviors: slapping a piece of paper against a window, running a hand lengthwise over a computer keyboard, twisting the knob of a drawer. She bats a necklace with her hand and nuzzles her face against the pages of a book. And you find yourself thinking: Who’s shooting this footage of the handicapped lady, and why do I always get sucked into watching the latest viral video?

But then the words “A Translation” appear on a black screen, and for the next five minutes, 27-year-old Amanda Baggs — who is autistic and doesn’t speak — describes in vivid and articulate terms what’s going on inside her head as she carries out these seemingly bizarre actions. In a synthesized voice generated by a software application, she explains that touching, tasting, and smelling allow her to have a “constant conversation” with her surroundings. These forms of nonverbal stimuli constitute her “native language,” Baggs explains, and are no better or worse than spoken language. Yet her failure to speak is seen as a deficit, she says, while other people’s failure to learn her language is seen as natural and acceptable.

And you find yourself thinking: She might have a point. {read more}