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

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

Autism spectrum research and disability language alternatives

Bryce Huebner, a superstarpostdoctoralphilosophygraduate currently working in Marc Hauser’s lab at Harvard, recently sent me the following query. Bryce is writing up descriptions of research on autism / autism spectrum disorder and theory of mind (ToM), research that explores differences between experimental subject populations (you know, controlled studies and all that), often different populations of children. He writes:

I am really struggling with the sort of language to use in discussing some of the developmental data on mental state ascriptions. Here’s my problem. I want to try to avoid ableist language in discussing ToM. But I’m not sure how to discuss the similar capacities that emerge for both ‘normally developing’ children and ‘developmentally disabled’ children in contrasting these capacities with the lack of one sort of ToM that we see in children with autism spectrum disorder. Do you have any suggestions about how to avoid the use of terms like ‘developmentally disabled’ in this case?

My short answer was that Continue reading