Autism Affinities Project

There is a downside to our always-connected, social media-addled world, but there are plenty of positives, too. One of them: the world has shrunk.

Last week, I began reading Ron Suskind’s book Life, Animated, about his family’s use of his autistic son’s intense love of Disney animation as a pathway to communication. Many of you might be familiar with it from a lengthy excerpt that ran in the New York Times Magazine two months ago.

I mentioned Mr. Suskind in a Tweet, saying how much I was enjoying the book. He replied, but went further than just “hey, thanks”

OK, hearing “you have a way with words” from a Pulitzer Prize winner put a little hop in my step for the rest of the day. Ron (since we’re buds now) and I began a Twitter conversation. It was the kind “meeting” that simply would not have taken place in the days before social media. As we continued our 140-characters-at-a-time “conversation,” we discovered we had much in common beyond our sons on the spectrum.

I told him how the book spoke to me, on nearly every page. Ron’s son Owen and mine occupy different places on the spectrum, but they also have much in common. Reading the Kindle version of the book, I liberally highlighted passages every few pages because they rang so familiar.

The Tweets led to a phone call, and an invitation to take part in what he is calling the “Autism Affinities Project.” As Ron puts it:

In the wake of the publication of Life, Animated, we’ve heard from countless families about the affinities of their own children. That’s what inspired us to start the Autism Artists Project. We hope it will become a space where the affinities of others, and the intricate and restorative art those affinities often prompt, will become more visible. The stakes are high: we believe there is massive therapeutic and social potential for acknowledging affinities as the complex and often beneficial phenomena they are. Please join us for this affini-tea party by submitting a contribution below.

I was in. Ron suggested I film a brief video with my Ryan, talking to him about his affinity for hockey stats. I floated the idea to him, and he was excited. As I wrote last week, he’s taking a real pride in this special ability. I mentioned it in the morning, and by the time I got home from work that evening, he was bugging me to get started.

The result is the video at the top of the page. Ron and I had another conversation, and that became the basis for the post at his site, which you can read here*:

I am grateful to Ron for having us participate in this exciting project, and I am very enthused about scientific exploration of “affinity therapy,” the idea that a person’s affinities may offer a pathway to communication in ways autism researchers and therapists have not previously thought of.

The connection we have enjoyed with Ryan through his love of hockey has enriched our lives in countless ways. It has served as a conversation-starter and a conversation-sustainer. It has served as the basis for road trips and their wonderfully long blocks of time spent in each others’ company. It has given us a common passion, and opened Ryan’s eyes to the idea of possible future employment.

His ability to store, sort and instantly recall thousands upon thousands of hockey data points is not only remarkable, it is teaching me to look more closely at the ways his brain operates to better understand him. And it is also teaching me to be accepting and proud of these special skills.

It is proving to be a pathway.

Many thanks to Ron Suskind and his assistant, Llilia Kilburn, for having us take part in the Autism Affinities Project.

* the names are different. We use our real names on the Autism Affinities Project site.


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