The book is for all parents, but it particularly centers on the author's reaction to his son Tyler's late (age 12) diagnosis of Asperger's syndrome. Which is why Paul and I couldn't wait to read it: we, too, have a son (Andrew) who got a late (age 17) diagnosis of Asperger's syndrome. (Andrew gave me his blessing to write this blog post.)
In fact, our stories are eerily similar. Here's an excerpt from the book that we could have written (except for the names and the job, of course!):
"All good things in my life start with Lori, including the story behind this story. Tyler was 12 years old and I was consumed by the 2010 congressional elections when Lori became hooked on a new NBC drama called Parenthood. It featured a large and loving extended family of Bravermans, including a boy named Max who had Asperger's syndrome, a mild form of Autism. Max frequently lost his temper, rarely made friends, and fixated on insects. His parents, Adam and Kristina, ricocheted between pride and fear. While they recognized max was gifted in his own ways – he was brilliant and preternaturally genuine – they couldn't escape the fact that he was a social misfit.
From the first episode, Lori recognized Tyler in Max – and cried. While our son's issues weren't as severe as Max's, Lori now realized that Tyler's social awkwardness was more than a phase. He wasn't just quirky. His fixations weren't just cute; they were a clue. His grades had fallen. Classmates teased him. He had no friends except for boys on the block, who didn't play with Tyler as much as they tolerated him. Lori thought, He's not going to outgrow it. She watched three more episodes by herself, not wanting to share her fears with me, because I might confirm them. Instead, she kept telling herself, I don't want him to be autistic."
Yes, after years of anxiety and anger and confusion, during which our son attended six different schools and two separate rounds of homeschooling, after talks with principals and teachers and parents who never once suggested Asperger's, and sleepless nights and teary phone calls and worry, indecision, fear...we discovered through a TV show what was going on with our son.
It makes me cry, still, when I think of it. So much grief for what we could have done had we known -- mostly, I think, we wouldn't have been so hard on ourselves, or on him. We found such relief in a diagnosis -- finally, a word to pin it on! We're not alone! Our son wasn't being willful all those times, he's just wired differently!
I also love this passage in the book:
"Why did it take so long? The most benign explanation is that Asperger's is easy to overlook because Aspies are so well-spoken and intelligent, according to [Temple] Grandin and other experts, especially when it comes to their favorite subjects.
Another excuse: We were enchanted. You've heard the expression “Kids say the darnedest things.” They all do. But kids with Tyler's particular wiring are uniquely bright and expressive, which makes them hypnotizing."
That's Andrew. And we're still enchanted!
In specific terms, I'm not sure Andrew's life would have looked much different if we'd known sooner. We we very proactive in helping him find tools to deal with his life in as positive a way as possible. For a family without a diagnosis, I think we did a lot of good things. But. I still wish I'd known when he was a toddler. I wish I'd had that word "Asperger's." Those years would have been more peaceful.
As for Andrew, the a-ha moment came for him after watching the play THE CURIOUS INCIDENT OF THE NIGHT-TIME on Broadway. He recognized himself in that play and ever since has referred to himself as a happy Aspie. He still struggles with things like social situations and reading body cues, and he is largely a loner. But don't we ALL struggle with something? He's smart and kind and witty and steady and dependable. He's precious, is what he is. As all kids are, whether they meet our expectations or not.
And that's really the point of this book. Here's a final quote for you:
"From their first breath – if not sooner – our dreams for our children are at least in the ball park of perfect, because great grades, championship trophies, lots of friends, and professional success lead to happiness, right?
Actually, no. When a parent's expectations come form the wrong place and are pressed into service of the wrong goals, kids get hurt."
The best thing we can do for our kids -- and anyone -- is love them just exactly the way they are.
If you're a parent or know a parent -- read this book.