Friday, February 29, 2008

autism continued

Just a quick note before heading to the airport. The response to the autism story has been remarkable. Countless people have written to continue the conversation, and the The New York Times blog picked it up a couple of days ago. Take a look if you have a few minutes. The puzzle to the left is part of an autism and brain science story discussed in a short Wired.com piece that accompanies the online version of the story. Meanwhile, below are a few snapshots of what people have written to tell me.




  • "I work directly with this population in the context of securing special education and related services. My clients often face “experts” who claim that autism is directly correlated with mental retardation most of the time. These same experts use this proposition to limit educational opportunities. So, the research that you reported on is very important to my clients and people everywhere in the US trying to get services for their children in public school."
  • A mother of an autistic boy in Colorado wrote that the piece is helping her "voice something I've felt for a long time; my boy is not mentally retarded. I mean, he needs so much leading and guidance right now to respond to questions that he can't even be given an IQ test--so the experts here just assume he must be <70."
  • "One friend is an 8 year old with ASD. He has such a wonderful imagination and ability to put stories together. I suggested to his mom that he should blog. Now he is. Here it is. He’s a great kid."
  • "We have battled that issue with school districts and professionals for years. My son is very intelligent, but he does not test very high on many IQ tests. He has many deficits with so called 'standard problem solving' issues, but on the other hand we do not own a GPS as my son is a human GPS who knows every road by County Road number as well as name. We live [x part of the U.S.] and one of the first things my son read was a sign on the highway 'Traffic moving well on Route [xyz].' Other kids first reading may have been 'The Cat in the Hat' or other well-known children books. My son's was highway warning signs."
  • "As a mother of an autistic son (who is 8), my question is: Then how do I open my mind to understand enough to connect to him? My son is extremely personal/engaging. He will look me in the eye. He talks a mile a minute, in a language I don't understand. The question I didn't see asked or answered was how does someone like me connect with my own child? How do I understand what would enrich his life? Am I doing enough? Does he need something different? How do I integrate my son into a world that only has a place for you if you can master some function of 'society'?"
  • "I know my boy is so smart it can be scary. But he does not seem to comprehend the implications of walking into traffic, and appears to be baffled by ordinary tasks like using toilet paper, flushing, washing hands, and so on. These areas remain a concern. While scientists may debate the degrees of ability and disability, parents want to find a way for their kids to be reasonably self-sufficient."
Not surprisingly, many people writing me are parents of autistic children or people with ASD. One of the things that has struck me is how many parents have written in with positive feedback. Instead of worrying that discussion of autistic ability might pose a threat to social services, they feel it's absolutely necessary--and overdue--so that science and society can better design services that fit their children's needs. If you have thoughts or comments about the story, or about autism in general, please post them here so others can see what you have to say.

6 comments:

Anonymous said...

Congrats, David, on your sensitive and intelligent article about Amanda and the (slowly) changing view of so-called low-functioning autism. My son, DJ, appeared with Amanda in a special CNN aired last November. He, too, is non-speaking and was judged, before my wife and I adopted him at the age of six, profoundly retarded. He's now 15, a fully included ninth-grader in a regular school, earning all "A"s (actually "A+"s), and using a computer to speak. He wrote the last chapter of my recent book: Reasonable People: A Memoir of Autism and Adoption. (We have a web site: www.reasonable-people.com) One small correction: the comment about being "treated with respect" was actually DJ's, not Amanda's, as she herself points out on her blog.
What saddens me about someone like Volkmar is he won't admit that scientists have been wrong about autism (intelligence, theory-of-mind, etc.). HE has been wrong. The debate about neurodiversity is so binarial, so dichotomous. To say the autistic brain is different and ought to be respected for its difference is not necessarily to precude treatment for anxiety, sensory processing problems, life skills issues, etc. Volkmar and others can use the rhetorical hyperbole of the neurodiversity movement to distract people from the fact that they've been wrong AND disrespectful. There IS a pragmatic, middleground position, one that doesn't seek to eradicate autism (for then you would lose all sorts of gifts), but to ameliorate some of its daunting challenges. My son once put it brilliantly: "Autism sucks, DAD, but I see things you don't see. Until Volkmar & Company see autism as another way of being they won't know how to treat it respectfully or adequately judge both its advantages and disadvantages.
Anyway, many thanks for the article.

Best wishes,

Ralph James Savarese, PhD
Associate Professor of English and Disability Studies
Grinnell College
Grinnell, IA 50112

Empty Head said...

Mr. Wolman,

Your article on autism was terrific! I am an attorney and work directly with parents and their children in the context of securing special education and related services. My clients often face “experts” who claim that autism is directly correlated with mental retardation most of the time. As Dr. Savarese comments and your article clearly illustrates, this view is objectively false. These same experts use this proposition to limit educational opportunities. So, the research that you reported on is very important to my clients and people everywhere in the US trying to get services for their children in public school. I did have one question: don’t you think Volkmar has a vested interest in the current model given that
“Handbook of Autism” the bible?

I think Dr. Savarese is correct: it's easy for Volkmar and others with deeply vested interests to divert attention from the real issue--autism is not mental retardation--by discussing the more radical issues of neruodiversity rhetoric. It would be more honest to face the scientific fact that one's research has led an entire generation of therapists and educators to the wrong view and start looking for ways to extend the research and get the word out. Too much to hope for, I'm sure. Your article was a skillful effort in the right direction. Good work!
Carl M. Varady
Honolulu HI

Bill said...

David, I want to thank you for writing that incredible article on Autism in the March edition of Wired. My nephew is autistic and is an amazing little boy. He is eight years old and I know that he has incredible cognitive ability, he just doesn't have the ability to express himself to society's liking. I think your article brings about a much needed discussion in this arena. I will be passing your article around to many friends and family.

Toddie Downs said...

David,
I read your article with jaw-dropped amazement. I've worked with several teens with autism, almost all of whom were non-verbal, and felt in my gut that none of them were of low cognitive abilities, although couldn't prove it. I worried when reading the article that families of children with autism might be angered - angry at the suggestion that their child who can't perform basic daily activities is not actually disabled but merely "different;" and angry at themselves for perhaps not seeing how much might be going on in their child's head. From the comments on this blog, that appears not to be the case, which is a relief.

Incidentally, I've posted a "thumbs up" to your article on my own blog, "WordHappy," (http://toddiedowns.wordpress.com) which celebrates all great writing. Congratulations on a terrific, moving, and important article.

Ed Brenegar said...

Your Wired article on autism,and my friendship with a number of people whose personal behaviors put them in range of being associated with autism or ASD, suggests to me that society is shifting from narrow, uniform compliance oriented social values to ones that find strengths and assets in the way people actually are. Providing a broadening social environment is very important for the autistic person as well as the non-autistic one. I'm glad that this is beginning to take plaace.

Anonymous said...

Congrats on all the great feedback you're apparently getting David, I think it's well deserved!

I found this article to be fascinating even though I have no personal ties to anyone with autism. I do have one connection to the story though--which is a program that I went through in my younger days that was designed for students who achieved well on the "Raven" test. It was called the Seminar program, and was something that the San Diego Unified School District has been doing for a number of years now. Because of my involvement in that program I've always been interested in hearing more about the Raven test and what exactly the implications of scoring well on it are, and your article definitely only further fueled my desire to learn more about this test.

Anyway, thanks again for the interesting and important piece, and please keep up the good work!