Today is a Tuesday, so as usual you get a couple of reviews. But today is not an ordinary Tuesday, and that’s what I’d like to discuss with you now. Today is World Autism Awareness Day.
If you’ve read Tequila Sunset, you know about the character of Freddie Salas. Freddie is a ten-year-old boy with autism whose mother works as a police detective. Freddie is verbal, but he has impulsivity and temper issues, plus he keeps a fairly regimented pattern of behaviors that, if disrupted, causes him great distress. Those of you who’ve read my blog for any length of time know that Freddie is essentially my son. On the blog we call him Nemo, though that is not his real name.
We first learned that our son was autistic in 2003. He seemed to be developing normally in all respects save one: he was essentially nonverbal. Oh, sure, he could speak a handful of words, but he should have had a vocabulary of a few dozen words by that age. He understood them well enough, which was good, but his speech was a mess. We took him for an evaluation, thinking that he might need speech therapy. We learned far more.
It took a while for the actual diagnosis of autism to come down. He was seven before they would say without reservation that he was autistic. Even then they continued to say that he had Asperger Syndrome, which is a kind of high-functioning autism due to be folded into an overarching diagnosis called Autism Spectrum Disorder. He had been in special education from pre-K onward, receiving various therapies related to his disabilities, which grew in number the older he became. Obsessive behavior was the first after his speech issues, and thankfully he did not develop major problems with his motor skills, though his fine motor abilities were eventually, and continue to be, affected.
The other day I watched the special preview of the new Fox show, Touch. I have some thoughts on the subject.
Just to be clear at the outset, I enjoyed the episode quite a bit, so if I sound critical of Touch it’s not because I’m slamming it. I do think that Touch is going to have some serious issues maintaining the complex storytelling method it lays out for itself in the first episode, but that’s just the writer in me talking. I’d rather discuss something more fundamental to the show, something that parents of children with autism will probably identify with.
In Touch, Kiefer Sutherland’s character is the single parent of an eleven-year-old boy who has never spoken, who shuns physical contact, obsessively counts kernels of popcorn before eating them and who spends most of his time (when he’s not disassembling cell phones) writing dense rows of numbers in various notebooks. Though the show goes out of its way to say that Jake (David Mazouz) was misdiagnosed as autistic — we never get a clear explanation of just what he’s supposed to suffer from — it’s pretty clear that the child is autistic. Or rather, that he represents the common media portrayal of autistic children.
Pretty much from Rain Man onward we’ve been primed by the entertainment industry to believe that all autistic people have tremendous gifts to offset their social and physical issues. Quite often these are related to numbers, such as when Dustin Hoffman’s character in Rain Man instantly counts the number of fallen toothpicks on a diner floor, or picks up on what cards have been dealt in a game of blackjack. And it is true that some tiny percentage of autistic people, children included, have some amazing abilities. The real truth of the matter is, however, that most autistic people are not gifted any more than the average person is, and their condition is crippling.
Some autistic children are so withdrawn that they don’t walk or even sit up under their own power. Some don’t speak, or use very few words or jargon. Some have social deficits that are impossible for them to overcome, even within their own families. Most will spend their lives as dependents, either of their parents, their extended family, or of the state. There’s no magic wand that’s going to make them all better if we could just understand them. Autism is a handicap. It can be severe or minor, but it is a handicap.
My son has autism. I may have mentioned this before. Our family is very lucky to live in a county that will cover his educational needs, sending him to a private school that specializes in physically and mentally handicapped children. They’ve done wonders for him, and though he will never be “normal” — or neurotypical, as they say — he has made outstanding progress in the years he’s been there. He also received early childhood education and instruction through kindergarten and first grade from a public school for disabled children.
I read yesterday about the costs associated with an autism diagnosis.
According to a 2006 study by health economist Michael Ganz, the direct costs to raise a child with autism to age 22 are more than $500,000 — and that’s in 2003 dollars.
That’s a hell of a lot of money, and we would be unable to come up with any of that on our own. So it’s imperative that we receive assistance, which we do, and I am forever grateful for that. Without the schooling my son has received and without the treatment, he’d be completely unreachable.
Education is only part of it. As I mentioned, my son needs treatment and a lot of it. Unfortunately for us, we don’t live in a state where insurance coverage of autistic children is mandated. From the article linked above, we learn:
In the past three years, the advocacy group Autism Speaks has coordinated a push to get states to pass laws mandating that insurance companies cover autism treatment.
“Our community had gone for far too long at the mercy of insurance companies who used autism as the basis of denial for meaningful, necessary, evidence-based interventions,” says Peter Bell, executive vice president for programs and services at Autism Speaks.