My autistic son Nat was born 24 years ago this month. And 24 years later scientists would learn that you could diagnose autism at two months of age. When I look back, I knew something was off after only two days, but I had no idea that it was autism. I thought the problem was me. When a friend of my mother’s held him and asked, “Have you ever felt such love?” I remember thinking I don’t know what I feel. I just wanted to cry.
Postpartum depression? Maybe. But I carried around a strange foreboding sense that something was wrong. Any new noise, the slightest jostle and up went his arms in an almost cartoonish alarm. The oddness of it sliced through me every time. It wasn’t anything I could spell out; the oddities were intermittent and unsettling, Cheshire cat-like moments of “why does he…” or, “why doesn’t he…” that never resolved.
It wasn’t until he was 3-years-old that I had a word for it: autism. And by then it was too late for early intervention services.
It wasn’t until he was 3-years-old that I had a word for it: autism. And by then it was too late for early intervention services. So he was put into a special needs preschool classroom run by the public school system. And nothing really changed for him until he was nearly 6, in a school that practiced a strict behavioral approach. Behaviorism was the only thing that could puncture that apparent indifference of his. I didn’t like this approach for that reason. It seemed almost mean-spirited, to force him to pay attention all the time to others’ trains of thought, to reward him like a puppy, with treats, to make him work every waking moment to correct himself. To learn that everything he did was wrong.
And yet this is what people did. We, the autism parents, would try everything until something worked. Very often, behaviorism worked. And it was a well-respected approach. It still is. It has data, after all. I had my own evidence as well. I could see that he was beginning to learn, to read, to talk — to be with people in a more conscious way. “Oh wow, Sue, he’s doing so much better,” people would say, their voices soft with wonder and relief. The hope was still alive that Nat could still somehow shed his diagnosis, and dwell in that promised land of normal.
It didn’t happen. No matter what we did, what therapy we tried, Nat’s progress was not very robust. There were many — including me — who believed that this was because we had missed the age 0 to 5 window of opportunity, the research that found the brain to be its most elastic during that brief time. For years I beat myself up over that, over Nat’s slow and anemic development.
Somewhere along the line I let it go. But when he reached his late teens, there was a stunning burst of growth. The sun’s rays shot out from behind those clouds and suddenly he wanted to be with people. No, he did not de-auticize. He just wanted friends.
How did we do this? What was this cutting edge therapy we had found, this latest in scientific development?
It was plain old being ready. Time. And the nurturing acceptance of Special Olympics coaches. The message that you are perfect just as you are, now let’s play ball. The first year on a basketball team, he learned he could tolerate the noise of the gym — and that was an achievement. The second year he could attend to his teammates’ calls to him. The third year, at 17, he could make a basket. He could take the ball up the court. He still didn’t know what to do once they threw him the ball, but no matter: he was a teammate, and he was happy to be there. The autistic young man was actually happy to be with other people.
When he reached his late teens, there was a stunning burst of growth. The sun’s rays shot out from behind those clouds and suddenly he wanted to be with people.
So when I hear the news that they can now detect autism in infants, I have to wonder: Is this a hopeful discovery? Is this one that we can all use, a finding that we need to invest even more effort and resources into the earliest kind of intervention?
Well, sure, I suppose this gets a lot of kids with autism to develop skills they might not have acquired on their own. But I also cannot help but champion just as much the kind of intervention that we learned about later in his life — when others might have given up, because of that fabled elastic brain time frame. Based on research, we now know that there is no such window that closes in the brain. People go on learning forever. But intervention resources stop at age 22. Even though it makes perfect sense to me that people who are developmentally delayed will, in fact, be delayed in their development. We need research like that. Research that tells us what to do to support the people who are born with autism — whether they are little babies who need to be taught to look and to point, or adults who have only just learned that it’s nice sometimes to have other people around.