I just learned a catch-phrase often used in the autism community. It goes like this: “If you’ve met one person with autism, you’ve met one person with autism.”
Today, on April 2nd–Light It Up Blue for Autism Day, at the beginning of National Autism Month, — I can’t tell you what the autism walk is like for everyone. I can’t say definitively that these are the causes, symptoms, problems, joys, and challenges all people on the spectrum experience.
I can tell you, though, in a mother’s voice, about one autism hero. My son, James, is 24, and on the autism spectrum.
James is a big guy, 6’2″ or so, and broadly built. He has the thick head of hair my mother’s genes so generously bestowed on many of us; the red glints come honestly from both his Dad and me. Jim has Mark’s brown eyes,–eyes just like his brother Matt’s– as brown and glossy, we used to say when they were each little, as M & M’s. Jim’s eyes seem to snap when he is intrigued, compelled, or outraged.
Big guy that he is, Jim has never been much interested in competitive sport; competition is not a language he speaks. Instead, he’ll walk endlessly, pumping his arms, listening to music on his smart phone, writing–I’m guessing–sagas in his head. Writing is Jim’s passion, and he feeds that passion with film, television, role-playing video games, and books. He started reading at an incredibly young age, and the world of story shapes and defines his life.
At 24, Jim is just beginning to find his stance. The transition from a structured school experience–the end of high school–to a life of choices and options and uncertainty has been difficult for Jim. As I read more, talk to more families, and get to know more adults on the spectrum, I learn that this is one of the few things that can be said universally of [almost] all adults with autism.
Education and job-training programs are built with a kind of ‘one size fits many’ philosophy, and they don’t often work for people with autism. In the adult autism community, unemployment is outrageously high; one study I read recently places it at 85 per cent. The college completion rate, too, is much lower than the average, despite the fact that many autistic adults have higher than average intelligence.
When Jim walks in and sits down, people who’ve just met him don’t say, “Hey. Gosh. A disabled guy.” But things that neuro-typical folks would brush off, cope with, or accommodate, are impassable boundaries to him. (This often appears to be laziness or defiance to people who have no training in, or familiarity with, spectrum individuals.)
Autism seems to mean that a layer of protective insulation against sensory bombardment has been peeled away. Jim is particularly vulnerable to sounds and smells; he couldn’t stand one job, for instance, because Top 40 music played, loudly and constantly. The coordinator, very sensibly and fairly, tried to work out a schedule…the folks who liked Top 40 got their days, Jim could pick the music on others. But it wasn’t a matter of fairness or sharing time; the Top 40 songs were a constant battering to Jim, and he soon left that experience.
“C’mon,” people say. “He left a job because he didn’t like the music?” That, I think, is the place where the path of the neuro-typical and the path of the autistic person start to diverge. Most of us would be annoyed, maybe, but we’d accommodate–we’d wear our ear buds, negotiate a different spot in which to work, or find a compromise all could live with.
That compromise, I have come to understand, is not a possibility for folks on the spectrum. The sensory input is not an annoyance. It’s insurmountable.
An example: A friend of a friend has an adult son on the spectrum who is a hard worker, reasonably social, and very bright. He has held a number of fast food jobs and lost them all. It’s not because he is late, unreliable, or inappropriate. It’s because he cannot–and really cannot, although it seems like ‘will not’–wear the uniforms. This young man doesn’t like the polyester texture or the tags. He says he can’t breathe in those clothes. He says he can’t wear clothes with writing on them. His bosses say, over and over, “Sorry, son. You’re fired.”
Sensory rawness marks these adults as different. Their social reactions can also be very unique and difficult to understand. I’ve found that many people on the spectrum are almost completely literal. If they’ve been told something is true, for example, they believe it should be true in all circumstances.
So a lovely young autistic woman, a former student of mine at a different college, seemed to morph into a virago when told she was not going to be allowed to take a make-up test in the testing center. It was 4:45 and the center closed at 5:00; there wasn’t time to take the test.
But Angie (not her real name, of course) had been told, by her instructor, that she could take the test at the testing center. And so, to Angie, the person who said that wasn’t true was a liar, and she told the poor assistant who had to share the bad news that, loudly and unceasingly. The center staff called for help.
Jim has really worked hard at learning to read social cues, and he does a great job, but he will still ask for help in unnerving situations. Looking in at his world, I sometimes think it must be like living in a foreign country, one where he can learn the customs if he works really, really hard. He never completely understands the random-seeming reasons behind the customs, though, and every once in a while, one practice might just loom as being totally intolerable.
But, like anything, there are flip sides. The literalness that makes some situations difficult for Jim and for others on the spectrum also makes some situations very, very simple. Jim believes, for instance, that all people have a right to respect, and he is always a champion for the underdog. He doesn’t care if you have a label of ‘PhD’ or of ‘DD’; if you’re his friend, you’re his friend. He is impressed by your spirit and not by your title. He is moved by photos he sees in the back pages of magazines of babies born with cleft palates ; he is incensed by injustice to marginalized folks–the mentally ill, the developmentally disadvantaged, gay people who can’t get married, the elderly abused in institutions we should be able to trust. Like competition, injustice is not a language Jim speaks.
Jim has arrived at his point in life by a lot of hard work, a lot of frustration, a lot of luck. He earned his high school degree on a normal schedule. Since high school, he’s completed over a year of college–he’ll return to that pursuit this summer–, and he’s taken part in several different job training programs.
He wants, very strongly, to live independently, and he’s working toward that. At the same time, that thought is pretty scary, and we need to help him take the steps to becoming secure in his ability to navigate independent, adult life.
This might sound like the writing of a wise and competent mother, but the truth is, the mistakes I’ve made are enough to fuel Jim’s conversations with his therapist for a lifetime, at least. Here we are, imperfect and impatient, in this unmapped territory, trying to help our intelligent, funny, vulnerable, loving son find a very good route to where he wants to be.
There’s not a route that’s well-traveled enough, though, for Jim to see the landmarks. In many ways, he’s in a rain forest with a machete, hacking away, not knowing what’s behind today’s particular clump of overgrown vegetation. I have no doubt, though, that he’ll create a path; Jim perseveres long after I would have given up. That, I think, is another gift autism has given him.
Jim is just one gifted, challenged, creative, sometimes difficult, sometimes amazing, always cherished, person with autism. Mark and I sit in support group meetings and are amazed by the commonalities we have with other parents and by the rich and distinct differences our offspring display. We hope that through our meetings, our discussions, our support of Jim as he increasingly takes ownership of his path, we can help, in a small but meaningful way, to ease the path that other young autistic young people will have to take as they reach that adult threshold. We hope there will be precedents or models they can learn from.
But we know that each of those young adults will also need, in so many ways, to walk their own walks. There’s not a one-size- fits-all answer–although there are things we can and must do to make life more livable for adults on the autism spectrum. As the understanding of this diagnosis grows, and its scope is defined (the CDC recently released a study estimating one in 68 persons is on the autism spectrum), we need to create opportunities for these individuals to use their gifts to help make society richer.
If you’ve met one person with autism, you’ve met one person with autism. And you’ve also encountered someone who can change your world view. This month, we celebrate that.