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. Continue reading

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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.

Continue reading

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. Continue reading

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. Continue reading

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: Continue reading

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