We left the developmental pediatrician’s office holding two things:
A diagnosis (“your son has clinical features of autism spectrum disorder“) and a practically translucent handout photocopied so many times that the information was hardly readable through our tears.
What we didn’t have in those very early days, thanks to the renowned specialist we consulted for our then 2-year-old boy, was hope.
This was a decade ago, in early 2004. It would be awhile before I completed my medical degree from the University of Google, I wasn’t blogging yet, and social media hadn’t exploded into the share-every-detail-of-your-family’s-lives-behemoth that it is now. Even if I had, the notion of sharing my family’s autism journey (which I now do, in various publications and blogs) was still too new.
At that moment – and in the days and months and years afterward – what I needed and what I craved most were the experiences of other families. I was on a quest for information, absolutely, but also the experiences and knowledge of others who were a few mile markers down this potholed, curvy New Normal Road that my family was driving down without a GPS (we didn’t have that either).
During those days and throughout the decade that followed, I turned to what I knew, what I could count on.
And you know what? I still do. Ten years into this, I’m not done learning. Not by a long shot. As different challenges come up, as our family’s journey takes different turns, as we explore different paths, I always come back to the books.
I almost hesitate to share a reading list, because what resonates with me may be vastly different for you. Like those of us who know and love someone with autism are so fond of saying if you’ve met one person with autism, you’ve met one person with autism. Same with the books. The books that I’d recommend and that have helped me and my family may be very different ones for you and yours.
But an Eleventh Stack post like this almost demands such, especially with tomorrow being the first day of National Autism Awareness Month. Perhaps you’re starting out on that journey where my family was ten years ago. Perhaps you have a family member on the autism spectrum, or a close friend’s child has just been diagnosed. Perhaps you’ve been wanting to learn a little more.
I think there is something intrinsic that compels us to seek out the stories of others and to share ours. That was the case with me. My favorites have been the memoirs written by the fathers (Not Even Wrong: Adventures in Autism, by Paul Collins; Father’s Day: A Journey Into the Mind and Heart of My Extraordinary Son, by Buzz Bissinger, and Not My Boy: A Dad’s Journey with Autism, by Rodney Peete).
The first books I read that made me realize that there were other families having similar experiences as mine (which of course I knew, but there is something validating about seeing such in print) were Making Peace with Autism: One family’s story of struggle, discovery, and unexpected gifts, by Susan Senator and the anthology Gravity Pulls You In: Perspectives on Parenting Children on the Autism Spectrum, edited by Kyra Anderson and Vicki Forman.
There are more books, of course - so many more that this post could be twice as long and go on to praise how people with special needs are being incorporated into children’s and teen fiction (maybe that will be part two. Or three). And that’s the point, really.
It goes without saying that I was – and am – able to read most of these books because of the library.
At a time when we thought we were being handed heartbreak, the books we discovered gave us hope.