At my son Sam's school, the math curriculum has recently been focused on coins. By the time Sam is an adult, all financial transactions will probably take place via the microchips implanted in our heads, but nevertheless, we've been dutifully working to help him understand pennies, nickels, dimes and quarters.
It's been a challenge. Unlike reading, which came easily to him and which he's very interested in, Sam doesn't really care about money (lucky kid). So one night, when we were going over the value of coins for what seemed like the hundredth time, I said to Sam, "Repeat after me. One dime is the same number of cents as two nickels."
Sam tried to repeat what I'd said, but what came out was a string of gibberish, along with the words "dime" and "nickels." Only after I simplified the sentence to "One dime is the same as two nickels" was Sam able to repeat it accurately.
Never has ten cents been so valuable. It's not often that you get a snapshot of how another person perceives the world, but my little "repeat after me" gambit provided exactly that.
Of course, it's no surprise to me and my wife that Sam has problems with receptive language. He's on the autism spectrum, after all, and autistic people often have challenges with receptive language. But it's one thing to know that intellectually; it's another to sample what it feels like from the autistic person's perspective. How much of what he hears every day sounds like gibberish to Sam? And how much effort does it take to compensate for this disability?
These questions touch on larger issues in the autism community -- because the world perceives Sam as a "high-functioning" autistic. And why not? Here we were doing math homework appropriate for Sam's age and having a conversation about it. There are parents of other autistic kids who might tell me that they would love to be in my situation.
But as the definition of autism has expanded and more and more people have been diagnosed, "high-functioning" autism is too often thought of as mere "quirkiness." For example, one blogger dismissed Amy Harmon's remarkable New York Times story about two young people with Asperger's navigating a romantic relationship by writing that the story was about "difficulties with personal intimacy, difficulties faced by most adolescents, whether they are autistic, or whether they are neurotypical."
An earlier New York Times piece, also by Harmon, was similarly attacked by Anne Dachel, a blogger at Age of Autism, who wrote about Justin Canha, the subject of the Times piece, "Justin struggles, as all ASD people do, but he's light years ahead of so many kids I know with autism. Giving us a talented, verbal, intelligent young man like Justin Harmon [sic] neatly pushed aside the severely autistic people of the same age."
Oddly, a mere two paragraphs before dismissing Justin Canha as having nothing to do with other autistic people, Dachel cites two important facts from the Times article: Justin barely spoke before he was 10 and hadn't made a true friend by age 20. Wow, I wonder if you could find any other autistic children who have to deal with issues like that. It's too bad that according to Dachel, Justin is too "talented, verbal, [and] intelligent" to teach those children or their parents anything.
Let's be serious. As Sam's story demonstrates, it's extremely difficult to understand how another person experiences the world, even if you know that person very well. Trying to do it for a person you don't know based on a newspaper article is next to impossible. Someone whom we dismiss as "high-functioning" may in fact have to work very hard to "pass" in the neurotypical world.
Why does the autism community continue to obsess over categorizing people as high or low-functioning? It's true that the needs of one autistic person may be very different from the needs of another, but that doesn't mean that they have nothing in common.
As Justin Canha's story shows, the autistic person who needs a lot of support in one area may become a person who needs much less support in that same area. Justin barely spoke before age 10. Now he's verbal.
He didn't suddenly change from "low-functioning" to "high-functioning." Rather, he received the support he needed and developed his skills. It's nothing more than common sense to say that the story of how Justin did it is relevant to many other autistic people, even if they are currently at a much lower skill level.
Autistic people can't be categorized like so many dimes and nickels. Autistic adults, no matter how much or how little support they need, can be our best resource on what it's like to navigate the world with autism. All we have to do is stop dropping them into ill-defined categories and try to learn more about the world from their perspectives.
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