Can the real autism expert please stand up? (#116)

In his "classic" 1943 article on autism, "Autistic Disturbances of Affective Contact," Leo Kanner noted that the mother of Richard M. "watched (and recorded) every gesture and every 'look,' trying to find their specific significance and finally deciding on a particular, sometimes very farfetched explanation. She thus accumulated an account that, though very elaborate and richly illustrated, on the whole revealed more of her own version of what had happened in each instance than it told of what had actually occurred."

Well, of course, Richard M.'s mother recorded her "version of what happened." One could equally analyze Kanner's essay to show how it too provides a "very elaborate and richly illustrated" account of eleven children with "inborn autistic disturbances of affective contact" that is altogether Dr. Kanner's "version of what happened" to these children with their "extreme autistic aloneness." The essay establishes Kanner, an Austrian who wrote the first textbook in English about child psychiatry, as an expert about this "condition," as the model of an autism expert.

I have to wonder what Kanner might have thought of all of us parents blogging away, recording the daily ins and outs of our children's stomach aches and new words and lives, or thoughtfully analyzing the arguments about the autism-vaccine link. Parents writing in a public forum about autism--about a "disorder" that once meant lifelong institution for a child and shame for a family, that meant the segregation of a child from the life of the rest of us--provide a first-hand, sometimes raw, very often straight from the heart, account of our lives with autism, with our beloved children. Of course there have been many books by parents--such as The Siege by Clara Claiborne Park--but the immediacy and fast accessibilty of the Internet makes autism blogging a true means to parent empowerment.

And autism parents are in particular need of this, in part at least to debunk the much-refuted notion of autism parents (and especially mothers) as the cause of what is a biological, neurological condition. No parent, certainly, or teacher, or therapist, or doctor, or psychologist, or school or other governmental administrator, gives any credence to the notion of autism as caused by refrigerator mothers. But cultural attitudes can last for a long time in us, albeit unconsciously, and I do think that there are many, many misperceptions about "what autism is" among the general public and even among us parents and professionals.

The witness that we parents provide by writing in the hyper-public forum of the Internet is not simply valuable. It is crucial to our society's continued understanding of what autism is, and of the understanding of the place and of the rights of our children in society. My son who has autism, and who presents with some of the more challenging and certainly uglier, aggressive and self-injurious, aspects of autism, has every right to be educated just as much as any child by our country's school system. He is not a problem but simply another child who must be educated, who must be taught; it is his right as a citizen of this country. Even as we build ramps and install bars in bathrooms for those who have physical disabilities, so must we put in place the accommodations for those who, like Charlie, are cognitively disabled. We must make adaptations for Charlie and children like him in the public sphere.

But, some may say, funds spent on special education mean that there is less for the other students and, in particular, for those students who are "gifted and talented." This is a thorny issue that has many angles and arguments. I was an automatic candidate for "gifted and talented" programs as an elementary school child; I have been more than fortunate to have attended some of this country's top educational institutions where my classmates were at the top of their classes not only in the US but in the world. (Yes, Kanner would have noted that Charlie comes from a "highly intelligent" family.) But I have never once had to struggle to learn as I have seen Charlie. It was a challenge to excel and to keep up with my classmates in college and graduate school but my efforts were nothing compared to Charlie getting himself through the two hours of his therapy session this afternoon, working on matching upper and lower case letters and words-to-pictures. He told his therapist "no downSTAIRS" when she came; he went up because he anticipated reinforcement; he cried and knocked stuff off his desk, he came right back and worked; he came to the table with a smile every time. The therapist worked through the full two hours getting Charlie to play games and talk nice and clear and I could hear his laughs and grins especially in the last fifteen minutes.

Writing an autism weblog empowers parents, whose experience has too often been disregarded by "experts." Due to Charlie's language disability, the testimony of Jim and me has too often had to stand in for what might be Charlie's own account as we discuss his medication with the neurologist or speak with our home consultant about the causes of his banging his head. We parents may be wrong about what is going on in our children's minds but we can never be wrong about how we feel and what we are trying to see while raising our children.

Autism parents are autism experts by fiat; we may not have letters behind our name but we know what autism is. We know that a child's having a bad day is because he is having a massive stomach ache. We know that, while a child evinces minimal signs of undersanding the calendar, he yet knows down to the day when his grandparents are visiting (my parents are visiting from California next week and Charlie has been talking about them, "Californy" and "airpane). We know that, as much as a child loves his grandparents, he is nonetheless wracked with supreme anxiety at the prospect of their visit. (And so Charlie, at 9.30pm this evening, started to kick and moan on and off and alternate between saying "Gong Gong Po Po Californy" and "No Gong Gong Po Po all done.") (The outcome is that Charlie is always glad to see his grandparents, but the change in the usual routine of things can agitate him no end.)

We know that, at the end of one tough week, getting brown noodles--rice noodles in peanut sauce with shrimp--says "I understand, I love you" more powerfully than any words. This week I heard an autism parent and professional say that "children with autism have the same IQ as their parents." She also noted that, when a child is determined to have an IQ of 60 from a test, the examiner should be commended for getting that score (which, of course, is simply what the child scored on the IQ test, not what her or his actual "IQ" is.) I have not heard this said so simply before and I think of it as a statement of hope, for all that is in Charlie and all of our children, and all that society must rightfully, and justly, do for them.

Autism Children Science Health Parenting

Comments

[natalie]

I enjoyed reading your blogs. Charming and insightful. I have a 2 1/2 year old autistic grandson and I am always looking online for information. I was wondering how we would know if Robbie was in the right program and I could identify when you talked about the peacefulness and smile on Charlie's face.