An excerpt from A Regular Guy: Growing Up With Autism
“Hi Laura. Just giving you a heads-up. There was a program last night on this cable channel about miracle treatments for autism. Something about a hyperbaric chamber, and there was another treatment—chelation, I think they called it. They also mentioned the diet thing, so you might be getting some calls. I’ve already gotten a few. Talk to you soon!”
This first phone message, from my brother Scott, was followed by three others, all from well-meaning friends.
I have grown to dread the news reports on autism breakthroughs and the phone calls that followed them because of the way they make me feel. Angry. Offended. Insecure. Guilty.
I feel angry because I have tried so many treatments already: speech therapy, psychotherapy, auditory training, behavior modification, psychotropic drugs. Can’t people see how hard I’ve worked?
I’m offended because they can’t accept Matthew as he is. Can’t they appreciate his honesty, his humor, and the pureness of his soul?
I’m conflicted. Maybe I should be open to some of these new treatments. Maybe they will improve his life. I followed every lead when he was young; I tried everything. Have I lost my resolve, have I become lazy, are my weariness and skepticism shortchanging Matthew?
I feel insecure because perhaps I haven’t done enough, and friends and family think that I could have done more. “If it were my child—”
I feel guilty. Just plain guilty. Since he’s not cured, maybe I just haven’t done enough.
But then clarity returns.
The friends and family who call me about new treatments have seen me struggle through the years and have heard my horror stories. They genuinely want to help. Haven’t I shared the good stories, the heartwarming stories, too?
Did I tell them how I lay awake the night Matthew was born just to hear the squeak, squeak, squeak of the bassinet being rolled from the nursery with my hungry baby boy?
“Can you leave him here with me now?” I had asked, and the nurse had smiled and said yes. Yes, of course.
Had I shared my joy when Matthew and Andy, at age three and one, ran out to greet their dad home from work with gurgly, contagious laughter? Maybe not. After all, it was a common thing in most families, but precious in ours for the sibling joy and sharing it showed, a sharing we feared was fleeting.
Or the day when Matthew was twelve, and I had scolded him for pushing his brother John into a swimming pool fully clothed. For the first time, Matthew showed genuine remorse. He doggedly repeated his apologies until he was satisfied that he was understood and forgiven. An ordinary occurrence in most families, but a rare victory in ours. Maybe I kept this to myself.
And then when Matthew was fifteen, I went to the skateboard store to buy a shirt for Andy. There was Matthew behind the counter, pretending he worked there.
“May I help you?” he inquired. Matthew’s helper, Ben, browsed nearby, pretending to be a customer as well. Have I told others how this made me feel—to see my damaged son trying desperately to be the responsible worker?
The most crippling aspect of Matthew’s autism is his social awkwardness. If we could put him in an oxygen chamber and smear him with cream that would suck the metals, good and bad, out of his body, would he become suave and understanding, insightful and clever? Would he learn to read faces and gestures and react appropriately? Would he be sympathetic?
Would he still be Matthew?
Matthew is now an adult, and I accepted long ago that he will not be cured of autism. I want others to accept this, too. It is not easy to be Matthew, someone who wants desperately just to be a regular guy. But I admire him for trying.