This I Believe: About Autism
Before I had children, I used to believe that anyone who had kids like mine was a bad parent. Now I know that sometimes, our greatest hopes and our best intentions aren’t enough. Despite them we can bear kids whose problems overleap our efforts to love and raise them.
I thought life would advance in a nice orderly way with three boys who are all smarter than either my husband or me. Now I feel like I am careening down a dark highway, not sure where I’m going. Then, out of the corner of my eye, I catch, too late, a sign that reads “You are now entering the Twilight Zone.”
I passed that sign about 10 years ago. We have been travelling in the Twilight Zone of autism ever since. And each year seems to take us further and further into a strange land where expectations are replaced by disappointments.
We bounce continually between hope and despair. Hope springs up on occasions when we learn our oldest, Will, has an IQ in the ‘superior” range. And despair follows when we discover he is failing three classes in his first year at high school.
Similarly, our middle boy, Andy, was three, when we were told he was profoundly autistic. They said he’d likely end up in a group home. But by the third grade his reading tested out at the tenth grade level. After then he began another descent.
Autism is now an epidemic. One in 150 kids, on average, has that label. And I realize it’s tough for them. But I believe it’s tougher for their parents who are trying to make a path for their children into the world. For my husband and I, our reality is now formatted around strategies, advocacy and grief. What other people take for granted, we have to fight for. Every minute, every day.
All those old rules: “I would never do that;” “My kid would never do that” and “That would never happen” are all dashed on the rocks of reality. And we are lying, smashed up, on the ground below. But somehow every autism parent I know dusts themselves off and begins again, vacillating between hope and hopelessness. We go on. That, I believe is heroism of its own category—trying when you no longer have the energy to try.
So, by all means pin a medal on children with autism when they climb a step, a hill or mountain. We are all grateful for every inch of progress along the way. But I also believe, for every tiny triumph, every little victory, that you should pin a medal on their parents too.