The Autism Reality Show (#109)


Tantrums like you’ve never seen before, foodstuff and worse thrown about while paper and grass are eaten, a child crouching in a fetal position lining up trains, cars, and felt-tip markers along the floorboards, lots of screaming, almost no words and a lot of humming plus noises that recall the microwave, bruises, really messy messes in the kitchen and bathroom and bedroom, monster terror about putting a toothbrush into the mouth: Would these be the sort of over-the-top, sensationalist scenes of an autism reality show on network TV?

A sort-of-third-grade-age boy rides to school with a blue fleece blanket over his head. His kindly teacher waits for him to exit and don his backpack, loaded down with 3 lunchboxes (food reinforcers, snack for the afterschool program, actual lunch). He has a high degree of pep and gets through his once-a-week gym class without prompting on the exercises. He calls out “Mom Mommy” at the afterschool program. He works on his new reading program for an hour at home, tells the therapist “downstairs,” and still works, a bit slower. “White noodles” he says when I ask him about dinner and “soyy sausss” and “hahmbooger, peas.” He snatched warm blue and gray golf shirts (his dad’s) and a sheet as I folded them. Jim piggy-backed him up the stairs and he fell asleep in a few minutes. That is the real story of Charlie’s day–the actual Autism Reality Show.

This blog, as is more than obvious, is all about my son Charlie. He is the star of the show, with Jim and his therapists and teachers as frequent co-stars. When I started writing here 114 days ago, I promised myself I would always tell “the whole truth and nothing but the truth” about autism as I know it. And, for me, telling the truth–telling it like it is–means writing all about our son Charlie. I also write about autism in an “academic” context, as my paper on autism and poetry for the upcoming Autism and Representation conference in Cleveland (an earlier version on the same topic is “Fractioned Idiom” and can be found here).

I have undertaken academic research about autism to find out how to help Charlie to grow and live to his full potential, and to help me understand him better. But I do feel a little odd to write about autism and not mention Charlie. It is simply true that I would know nothing about autism or special education or speech therapy or behavior analysis without Charlie. Jim and I were both early readers (4 years old) and largely self-taught; today I sat on the floor watching Charlie slowly match a flashcard with “yellow” with another one that said “yellow,” with gently prompting from his therapist. She and I then poured on the praise, tickles and cheering and “GREAT JOB WAY TO GO that was soooo beautiful” (in life with autism, one learns how to be, at least, a bad actress). Without Charlie, I would be writing academic essays about the Classics and Asian American literature. I would be recalling the time I spent in “gifted and talented” programs and be calling for support for these above all else. (I recently became one of the co-chairs of my town’s parents’ special education advocacy group.)

Like autism parents everywhere, Jim and I live and breath “what Charlie has” or, rather, “who Charlie is.” We both have demanding teaching and adminstrating and advising jobs; we both think constantly about our boy in his classroom in our town, or waiting for Danielle to pick him up at his afterschool program, or sitting at his desk and matching a flashcard. We would still be living in the Midwest instead of Jim’s native, beloved New Jersey had it not been for Charlie.

So, it is near-impossible for me to talk about autism, to hear about “the little professor syndrome,” without saying “my son has autism“. And it’s even more impossible for me to write about autism without telling some story about Charlie. There are shelves of psychological books and journal articles of autism I have yet to read; there are piles of neurological and biomedical research to work one’s way through. But the most valid evidence for understanding autism is, to me, our daily life with Charlie; the downs, ups, ins, and outs, triumphs, trying times, the everything.

I was deeply saddened to read that a fellow autism parent and blogger has decided it is the end of writing about his daughter, Megan. I cannot believe that people have written “invective against me or (incredibly) against Megan herself.” I am ready and willing to field invective and critique of what I write but about Charlie? As if to suggest that he is not trying enough, or trying hard enough?

The power of writing about Charlie is directly proportional to the honesty I bring to my writing. Writing about autism–including much “professional” and “academic” writing, such as the painfully wrong work of Bruno Bettelheim–is steeped in untruth and misunderstanding: Theories of “refrigerator mothers.” Assumptions that autistic children want to be alone because they do not respond in typical ways to language or other social communication. Assumptions that autistic persons who cannot talk do not understand language at all and care not all when others talk about them in their own presence. A professor at a substantial university was shocked when I explained to her that autism is not a “behavioral condition” but a neurological disorder, a disability. Despite no formal, academic training in psychology, medcine, child development, or education–he was a student of art history–Bettelheim was the reigning autism expert for years in this country and we are still living with the aftereffects of his terribly and terribly wrong theories about autism.

That is why I write about Charlie and the nitty-gritty, minute bits of our life. There is so much misunderstanding about autism in the general public–despite so many intense and noble efforts by so many autism organizations–that an autism reality TV show would probably be a painful and altogethr false hodgepodge of a child behaving badly amid frantic parents and worried therapists. The Autism Reality Show is not always the most interesting or exciting–the big event of the day was that Charlie said “Charlie go beach house!” on his own, adding that lovely verb. If you read Bettelheim’s The Empty Fortress: Infantile Autism and the Birth of the Self (1967), you will encounter strangely detailed accounts of Joey the mechanical boy,” accounts that still cling to the general public’s misunderstanding of autism.

The real details of autism are here. The real acount is about Charlie wanting an orange at 9.45pm, and sitting on the kitchen table watching me cut it into eighths, and carrying the bowl very seriously and setting it in precisely position on the blue couch. And about him wrapping himself in the still warm-from-the-dryer laundry, and smiling at me, and saying “knock knock, knock knock” prior to Jim’s “who’s there”. And, “good to see you!” And making a lot of noises that reminded Jim of the sounds of his parents’ garage door opening. And then, “goo night, wight on, turnonna wight.” I flicked on the hall light and called quietly over my shoulder, “Good night, little boy.” “Goo night! Night.” He turned, burrowing under a quilt and his blue blanket.

There is no autism story for us without the Charlie Fisher story. It is a glorious, mundane, and always hopeful tale. And that is just the facts, and definitely the truth, about our life and Charlie’s in (Jim’s coinage) Autismland together.

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