Making the World Safe for Autism (#124)

What is autism?

This is the question addressed, again and again, in the papers that we have been listening to all day at the Autism and Representation conference. The morning began with a discussion of how we diagnose autism, with careful scrutiny of Leo Kanner’s 1943 article on autism and of Bruno Bettelheim’s 1967 The Empty Fortress: Infantile Autism and the Birth of the Self; how is our "social construction" of autism intertwined with our particular cultural and historical perspectives? We considered the workings of creativity and the imagination and of narrative in persons with autism. We were witness to an engaging dialogue about autistic autobiography, and the role of the conversion narrative in memoirs and other accounts of autism. In the evening, we heard poetry and creative non-fiction by family members of persons with autism.

Some in the autism community may wonder why it takes a whole conference to consider a question whose answer is seemingly well-established. A lot of us parents do not hesitate to say that, if there is one thing we know, it is what autism looks and sounds like. The intense experience of living with our children has made us unexpected experts in our children’s disability. Some would say that we should be thinking about how to "cure" and "defeat" autism rather than to spend a whole weekend talking about how autism is portrayed in film and literature, in medical and psychological texts, and about how these representations influence the public face of autism.

But pause and think of how often you have told someone your child is "autistic" and they have said, with faint curiosity, "oh, artistic?". Or, upon your saying MSHA, said someone launches into an enthusiastic exclamation of, "Oh, I just read that Curious Incident book about the dog–do you think the author gets it right?" Or, "I’ve heard people like that have these special savant skills. Does your child?"

For the record: Charlie is definitely autistic and (as so far evidenced from the crumbled construction paper that comes home in his backpack) does not have an inclination towards art–though (as my mom reported) today, after they brought home a pumpkin and told him they were going to carve it, Charlie went to a drawer and pulled out a (really dull) knife. He drew on the eyes, nose and mouth with help from my dad (who I presume did the carving); Charlie was careful to be sure the "hat-lid" of the pumpkin was precisely fitted back on top. And, while Mark Haddon’s novel may not provide the "truest" representation of autism, Curious Incident can spark a good discussion among a public who may still think autism a "behavioral disorder." And, no, Charlie does not have any savant skills (unless you count his uncanny ability to seemingly smell cassette tapes, even in places he has never been to before).

Most of all, it often seems to me that Charlie, due to his limited speech and his neurological wiring, seems not only "different" but, if I may so, dumb–mentally retarded. Through our life with Charlie day in and day out we know that this is not the case, however he might score on an IQ test. Charlie’s tantrums, his head-banging, his lining up photos and blocks on the floorboards, are all means of his communicating to us and of his self-expression–though we certainly strive all the time to teach him more and the most appropriate means of getting his point across. When Charlie cries out "Whatsa matta, Charlie?" in the midst of a mock-tantrum with squealing and low growling, he is mockingly repeating what had been said to him in school or elsewhere when it could not be figured out why he was so upset.

Jim and I know that, at such moments, Charlie is not simply being "bad" but is telling us something and it is our duty as his parents to try to figure it out. And it is also our duty, as his best advocates, to spread the word about who he is, about autism. It has become our lifework to further understanding of autism, and not simply to promote autism awareness (whatever that might be). And true understanding must start with careful re-examination and reflection of what autism is, by professionals and parents and individuals with autism all together.

For autism is Charlie, and Charlie is our boy, and until we have made the world safe for autism, we all have a lot more work to do.

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