What does last month’s news from the Centers for Disease Control and Prevention — that autism incidence is now 1 in 150 — mean to me, a mother of a 17-year-old severely autistic boy? Unfortunately, almost nothing. Likewise the federal Combating Autism Act signed into law in December. That is because the act and most other autism awareness news focus largely on young autistic children, not older people such as my son. And while I am happy for the families that will benefit from the attention to increasing autism incidence and the influx of early-intervention money that all this new awareness is bringing, there is very little here that will help my son get what he vitally needs: support for independent living.
The necessary resources — adequate programs for education, vocational and independent living training — are few and far between for older autistic children. The same amount of research simply has not been devoted to “late” intervention, even though there are 1.5 million autistic children and adults in this country. Why is that? Is there thought to be more hope for the younger children than the older? Many experts have pointed to the greater elasticity of the brain in a child’s youngest years, underscoring the need for early intervention. I suppose that makes sense: Sometimes, with enough early intervention and school services, some autistic children are able to do well with less later in life. And Nat, who did not receive early intervention, predictably did not make robust progress in his elementary school years. In fact, for the past couple of years, I have just been grateful that he is no longer aggressive. I had given up hoping that he would talk more. I had begun to accept that I had seen just about all I was going to see in terms of Nat’s development.
A few months ago, however, everything changed for us. Nat asked me a question for the first time. It was pretty mundane as big questions of life go: “Where are your [my] pajamas?” he asked, standing in the kitchen in his underwear. I was cleaning up after dinner, and, my mind on dirty dishes, I began to answer, “Oh, they’re under your pillow — “
I stopped. “Nat! You asked a question!” I went running upstairs to my husband, to tell him the amazing news, with Nat behind me, patiently waiting for his pajamas.
As things sometimes go with Nat, my happiness at his progress quickly morphed into something else, a fierce yearning for more. Old feelings, hope that I thought I had long ago let go of, shot to the surface in the form of searing questions: How do we capitalize on this developmental burst? Was he capable of more? Could he improve enough to live independently? Followed by the wrenching, What else should I be doing for him? What should I do next? This is my siren song. It has, in the past, had the power to wake me up at night and make me want to tear my hair out.
Like the parents of young autistic children, I have hopes for my son — though others may not. I just know — at least I hope — that if we strike while the iron is hot we might end up making a huge difference in his future, his independence. We are not alone. The many families of older autistic children have needs, too. We want support such as home-based therapy and job training for our children. We want housing for them. We want to know that they will get the right kind of care when they are adults. And we want educational strategies for them, because often autistic people bloom late, as my boy has.
My heart hasn’t pounded like this in years. Where the younger parents are looking for answers, to understand “why?” in terms of autism, our lives have changed dramatically because of one small question. Nat has taken one big step to cross an enormous chasm: He has figured out how to reach out to another person.
The remaining question is: How do I make sure he gets the rest of the way across?
Copyright 2007, Washington Post