Autistic and Coming (Reluctantly) of Age (The New York Times)


The New York Times | Joel Yanofsky

 

In the last few months, my 14-year-old son Jonah has grown taller than his mother. Which means just one thing: I’m next. In our below-average size family, this doesn’t exactly qualify him for March Madness; still, it should be cause for celebration.

 

Jonah isn’t celebrating. Instead, he seems to be finding the prospect of growing up unsettling.

 

A lot of us do, but, in Jonah’s case, the mysteries of getting older are combined with the even more confounding mysteries of having autism. So while other kids are likely to take your word for it that growing up is a simple fact of life, Jonah is skeptical. Occasionally, he even expresses a desire to be short again, which probably explains why he asks his mother to stand on tip-toes whenever she’s next to him.

 

My wife, Cynthia, the practical one in the family, has dealt with this issue by tracking down a suitable book to read with Jonah. “What’s Happening to Me?” is a primer for boys going through puberty. With chapters like “Getting Hairy,” and “Down There …,” it’s straightforward and cheerful. But I’m still not sure it addresses Jonah’s real issue: which is not why is all this happening to him but why does it have to happen? In other words, why can’t everything go back to the way it was?

 

As the impractical one in the family, I’m ignoring all the puberty stuff – a convenient strategy, I’ll admit – and taking the philosophical high road. When Jonah asks me why he can’t be little again, I tell him that’s just the way life is.

Jonah remains skeptical. He doesn’t come out and say it, but I can guess what he’s thinking: “That’s not fair!” And he’s right; it isn’t. Who wouldn’t want to stop time if they could, or just slow it down a little?

 

I’ve also been telling Jonah not to worry about the future since that’s what is really behind his concern about getting taller. He’s worried about the special challenges he already senses await him. Here, too, my advice isn’t helpful or especially credible. When you’re the parent of a child growing up with autism, worry is all you do. You’d be crazy not to.

 

In her new memoir, “Next Stop: A Son With Autism Grows Up,” the Washington, D.C., writer Glen Finland transforms her worry into a practical strategy as well as an engaging story. She sets out to teach David, her 21-year-old son on the autism spectrum, how to navigate his way around the D.C. metro train system.

 

Of course, more is at stake than David getting from point A to point B. There’s Ms. Finland learning “how to shut off my dependency on his dependency on me.” There’s also the fact that she and her husband are hoping that if David learns to ride the metro, he can get a job and an apartment, pay rent, have “a real life.” And maybe, Ms. Finland adds, “find somebody other than his dad and me to love him well into the future.”

 

For parents of children with autism growing into adulthood, “Next Stop” is a handy map “well into the future.” That’s because, thanks to the dramatic rise in the incidence of autism in recent years, that future is coming whether we like it or not. Someone, soon, had better write the book, “What’s Happening to All of Us?” After all, as Ms Finland points out, her son is just “the first generation to come of age in the age of autism.” There will be more.

 

In the meantime, Jonah is starting to get used to looking down at his mother. Probably because he has tougher questions he needs answered, like where will he live when he gets older and with whom.

 

“Will you still be my father when you die?” he’s been asking lately.

 

“I’ll always be your father.”

 

“No, really?” he says.

 

“What can I tell you, kiddo,” I say as philosophically as I can, “life isn’t fair.”

 

Joel Yanofsky is a writer in Montreal. His latest book is “Bad Animals: A Father’s Accidental Education in Autism.”

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