Inexactitude is the best friend (forever) of lousy ideas. This week, The Wall Street Journal ran an article about a young woman who was diagnosed with autism at 21. The article said: “Autism spectrum disorder has always been difficult to diagnose.”
No, it has always not. One more time, let’s recall that when Leo Kanner first described it, in 11 children, in 1943, he called autism “markedly and uniquely different from anything reported so far.” The idea that “the experts” have gotten so much savvier about spotting it is part of the “better diagnosing” canard that has kept alive the idea that autism hasn’t really exploded in the past quarter century. Of course, it really has.
That’s not to say that someone at the margins of the diagnostic criteria won’t be overlooked. This woman appears to fit the diagnosis formerly known as Asperger’s, and is possibly a savant. She was discussing the life cycle of insects with her parents at age 2 – no language delay, a criteria of full-blown autism, there!
But what really got my attention was the comment in the article that “people with autism generally have difficulties relating to others, but many are happily married with children.”
Really? Many adults with autism are happily married with children? That would be wonderful, but I’m skeptical under any reasonable definition of the word – a large number, a good proportion, of those with autism are happily married with children, the Journal is telling us.
First of all, there are not many adults with autism under any definition of the word! If there were, we would not be hearing about the disaster in the making of children born during the “autism boom” starting in 1988 now aging into the adult world and workplace. The moment when the school bus stops coming would not be the financial and social crisis it is if there were many adults with autism. We’d have the hang of this.
Let’s see, if we applied today’s rate of 1 in 68 children diagnosed with autism to the population as a whole, there would be 4 to 5 million adults with adults, right? One in 100 would be 3.2 million people in a population of 320 million, and 1 in 68 would put it over 4.
Given that, if “many” of those millions of autistic adults were coupled and raising families, there would be tens or presumably hundreds of thousands of them. You’d know them and I’d know them. (I do know a few such people, and I admire them greatly, but that is not the issue.) I would assume there would be support, social, and legal-advice groups for Autistic Parents United, or similar organizations. Our once-over-lightly mainstream media would have a field day with mother’s and father’s day featurettes on how parents who miss social clues themselves are nonetheless helping their teenagers cope with adolescence.
As it is, the only real role models for young autistic people are Sheldon and Amy on The Big Bang Theory, and their stumbles toward intimacy are being played for laughs, and syndication rights.
Of course, autistic adults raising families of their own is a consummation devoutly to be wished. Why are so many parents working so hard to recover their children if not in hopes of giving them the gift of independence, happiness, and love? And some kids do recover. Who can forget the video of Bernie Rimland calling recovered children up on stage at an ARI conference?
More recently, and personally, I know the family of a child named Quinn who is shown with severe autism as an infant in Eric Gladen’s marvelous film Trace Amounts. Now, after tireless work by his parents (to recover him from vaccine injury) and Quinn’s own indomitable spirit, he is a healthy happy boy with every hope of having the kind of life we wish for every child whatever their "diagnosis."
But like Quinn, most people with autism in this country are children. Most are far more severely injured than the 21-year-old the Journal profiled, and most, alas, are not going to recover to the point where they pick back up with their peers and exit high school with legitimate hopes for what Freud said were the two pillars of a happy life, work and love.
Tossing out the cheery term “many” in the context of happily married autistic adults with children, and suggesting things will be all rosy and typical for "many" of those to come, is just more denial. It glides right past the real trials faced by today’s autistic generation and their devastated parents. (And of course it ignores the issue of why there would be so few autistic adults, married or otherwise, and so many, many autistic children.)
That’s why I had kind of a bittersweet response to the story Anne Dachel sent around from Florida this week, about 500 children with autism who attended their own prom. Good for them, and their moment to shine.
But will “many” of them go on, as their typical prom peers will, to fall in love, to get married, to support themselves and to raise families? To borrow a famous diagnosis of another generation: Isn’t it pretty to think so?
Dan Olmsted is Editor of Age of Autism.