Autism Is A Journey Not a War (Video)
As the mother of a teenager on the more severe end of the autism spectrum, I feel a bit wary about what are being called “autism wars,” the notion that autism is over-diagnosed and the latest “reflection of the culture’s tendency to pathologize natural variations in human behavior” (writes Amy Harmon in the New York Times); that it’s simply “trendy” now to have a child diagnosed, or yourself diagnosed, with an autism spectrum disorder.
My son would have been diagnosed with autism — or, in an earlier era, mental retardation and/or emotional-behavioral disorder — regardless of the latest revisions to the criteria for autism in the Diagnostic and Statistical Manual of Mental Disorders (DSM). Charlie can only talk a little (though far more than when he was diagnosed at the age of 2 in 1999). He has extreme “behavioral episodes” that are not seizures but from some sort of unusual neurological activity and that manifest themselves in ways like thrashing, biting, banging, grabbing — not because there is any intent of hurting anyone but because, again, of something in his neurological functioning.
When I mention some of these episodes, some parents with children with an ASD diagnosis register alarm, suggesting that their child does not do such. There is much variety among individuals diagnosed with an ASD and it is a truism that “if you’ve met one child with an ASD diagnosis, you’ve met one child.” But all children, all of our children, struggle in other ways and deeply.
My husband Jim Fisher and I, while recognizing that Charlie’s cognitive challenges are significant — there is a pang to know a friend’s child who had a PDD-NOS diagnosis when younger is entering a competitive high school while Charlie attends a county autism center — but it is better that more children at all ends of the autism spectrum are receiving a diagnosis. They are children whose struggles would have been written off as due to “lack of character” or “moral failing,” as Jim’s hyperactivity in classes taught by nuns in full habits was considered in the 1960s. Today, Jim would have quickly been given the diagnosis he came to realize he has — ADHD — and provided not only with an Individualized Education Plan (IEP), but sessions in the resource room to help his failing grades in math (in contrast to his very high scores in English and history), extra time on tests and much more. There would be accommodations and understanding, not derision and the message that “something is really wrong with you and you will suffer and it’s your fault.”
In raising Charlie, Jim and I prefer to focus on the day-to-day realities of Charlie’s life; of providing him with the best possible schools and services and programs that teach him to use his abilities (he has many, though it takes specialized teaching and understanding to note these). A young man, Alex Masket, who has some similar struggles as Charlie, is an artist who makes beautiful art out of colored duct tape, legos and other materials. (He did this installation in his New Jersey bedroom.) I was fortunate to meet Alex’s mother a few years ago, shortly before he was turning 21 and therefore on the verge of “aging out” of educational services. She did not mention Alex’s art and I was thrilled to realize that he is her son on watching this documentary, Breaking Boundaries: The Art of Alex Masket:
Charlie has created a picture or two with similar attention to color and symmetry as Alex. So far, Charlie shows limited inclination to do more than the occasional picture or two in art class at his school; his preference is to be outside riding his bike for several miles with Jim. I like to think that, like Alex, Charlie (with a ton of support and love from his parents, especially Jim; together they have ridden thousands of miles over the years, enough to go to Mongolia — I’m not kidding) is finding his passion and his talent, and that somehow this will lead to something good for his future life. Charlie will not be going to college nor will he be able to drive, take care of his own finances, live by himself. Someone must always be at his side when he rides bikes.
We feel privileged that we have been able to accompany Charlie on these rides, so far: Autism should not be about “wars” and catfights over who should be diagnosed or not. Autism is rather a journey that many of us have found ourselves on. We are fortunate to be able to have our boy as our companion and our guide.
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