My Autistic Child in the Balance

Washington Post, November 23, 2003

At 14, my son has reached a major crossroads in his life — but he doesn’t even know it. While other boys his age prepare for high school and ultimately college, he is now being channeled into a strictly vocational track, to a world of lowered expectations and dim hope — and is losing his academics altogether.

Over the years, and especially recently, I have listened to politicians and school professionals swear that every child — even one as disabled as my son, who has autism — should be expected to rise to a certain level of academic achievement. Congress continues to debate just how much access to the curriculum children such as him deserve, and new federal legislation requires that school systems now push for every child (even mine) to be proficient in English and math in the coming decade. But I have yet to learn how, precisely, that will happen for him.

I do not blame the hardworking people who sit with him daily and figure out ways to reach him for deciding that there is no more use in teaching him social studies or literature. That there is no option for him other than skill-building is not their fault. And in our previous team meetings, the school staff made efforts to offer the state curriculum strands to my son at his level. The language around the table had always been peppered with such familiar terms as “multiplication” and “science.” And even though his program was institutional in so many ways — no art on the walls, no performances, sports, enrichment or even socialization among the kids — there was still a modicum of school atmosphere within the classrooms themselves. The teachers attempted to keep things as “normal” as they could, given the circumstances of fairly severe autism, and I would derive comfort from this apparent illusion of a regular classroom experience, even when the curriculum was not very inspired.

Until now. I reviewed the proposed goals for the coming year, and I saw nothing from the past. Math had become “money skills.” Science and technology had become “learning to e-mail.” Literature had disappeared. I asked about the state standards and how he was going to achieve them, and the room got very quiet.

I am trying to understand how in this culture of high achievement for all, this has happened. And I know, in my heart of hearts, that with all the progress made by educators and lawmakers, it is because there is still very little future for a child such as mine, just as there is so very little understood about how to educate him. We no longer institutionalize, we include. But do we really? How can we, if we still do not know how best to reach people like him? Our approaches are still in the Dark Ages, while the numbers of children out there in need are huge. These children with full-blown autism are perhaps society’s greatest challenge, and yet we know so little about what to do for them. At 14 this son of mine still sucks his thumb in public. He unabashedly loves Disney. He still has difficulty answering simple questions accurately. I understand how limited he appears to others.

It’s just that to me there is so much more. I look at him and I see a quiet but passionate boy with a mischievous streak. A long-limbed kid who is a natural athlete. A person with hobbies, likes and dislikes. If I allow his educational team to decide on this strictly vocational, non-academic direction to his education, am I, too, shortchanging him? Am I asking the impossible of his school, or should I indeed be pushing the people there to work even harder for him? Should I fight to keep the academics in his life, or would I be putting pressure on him to be something he simply cannot be? Having to make this choice for him opens up wounds in my heart that I had thought long healed.

I suppose, then, that this crossroad is mine as well as his. I am being asked to bear a greater sorrow than I imagined possible, perhaps worse than the day I first learned of his diagnosis. I am to accept that this very narrow future, this nearly closed door, is the only remaining place for my firstborn son. Perhaps I should take comfort, for once, in the fact that he is not aware of what people are saying around him and about him. I guess the only thing I can do is take his hand and we will cross, together.