Today’s post is from my friend Claire LaZebnik co-author, with Dr. Lynn Kern Koegel, of Overcoming Autism: Finding the Answers, Strategies and Hope That Can Transform a Child’s Life, and Growing Up on the Spectrum: A Guide to Life, Love, and Learning for Teens and Young Adults with Autism and Asperger’s.
I’d be the first to say we got lucky.
Right now we’re preparing for the high school graduation of my oldest son, a boy who was nonverbal at the age of three and still almost entirely echolalic at six, who self-stimmed and chattered to himself in an incomprehensible private tongue throughout his elementary school years, whose prognosis, we were told when he was first diagnosed with autism, was impossible to predict.
In about four months we’ll be dropping him off at a small four-year college on the east coast, where he’ll be just one entering freshman among many.
See what I mean? Lucky.
Or something.
There’s an old joke about a scientist with identical twins. Someone notices he’s only got one of them with him.
“Where’s the other one?” she asks.
“You mean the Control?” the scientist replies. “He’s in the basement.”
In real life you don’t get a control. You have this kid and he gets a diagnosis and you have to start making decisions. And if he improves, you think you made the right decisions and if he regresses or plateaus you switch to something else and all the time you wonder if it’s all hard-wired anyway, and all this stuff you’re doing doesn’t make a difference. With no control, it’s hard to know. And yet …
I love science. I hate supposition, superstition, exaggeration and falsified data. Show me the research, show me the results, show me the conclusions–and then show me some qualified peer reviews of all that.
Don’t give me a celebrity talking about her own kid: give me a well-respected clinician who’s spent years of her life recording trials and outcomes and drawing conclusions based on hundreds of samples-conclusions which she’s able to verify in future studies.
So my husband and I followed the path of science when we were searching out interventions for our autistic son. We visited universities and clinics that had been around for decades. We read books and talked to doctors. Our path led us to behavioral interventions, the kind where you use natural reinforcers (plus the occasional M&M) to encourage your child to talk, to interact, to engage. Progress was slow but it was there.
He needed a one-on-one aide in elementary school. He didn’t in middle school, but he did have a tutor. Halfway through high school, the tutor we liked moved away and so he forged ahead by himself. After all, we said, he’ll be going to college in a couple of years. He has to learn to do things by himself.
And that’s when I realized that at some point we had stopped wondering whether or not he’d go to college and started assuming that he would.
The story’s not over, of course. I know plenty of kids on the spectrum who’ve headed boldly off to college and then fled back home, overwhelmed. But still … we’re lucky even to be facing that possibility.
There are parents who’ve done exactly what we’ve done, followed the science and worked hard with their child every single day, who never got to this point. So there’s luck in there somewhere, luck possibly at some microscopic neurological level.
And for all I know, my son would have succeeded without all those hours of intervention. I mean, I don’t think he’d have done this well without them-but I don’t have a control, so I can’t be sure. All I know is that if I had to do it all over again, I’d do it all over again.
To those parents who are just starting out, here’s my advice.
–Seek out the most reputable and researched behavioral interventions available in your area.
— Find therapists who have clear goals and who trained at a real clinic or university and whose manner of interacting with your child feels right to you.
— Work closely with your school and, if possible, mainstream your child with an aide.
— Look for slow and steady progress and give up on the idea of miracle cures–they’re not out there.
— Love your child for who he or she is and stop thinking there’s a different, better kid “trapped inside.”
— Hope for the best, survive the worst, find humor wherever you can.
Oh, and one more thing: if you can swing it, get lucky.
****