Remembering Steve Silberman

The writer and neurodivergence ally has died at 66

Photo by Luiz Rampelotto/Pacific Press/LightRocket via Getty Images

I learned yesterday that Steve Silberman, the writer and disability advocate, had died. His husband broke the news over on BlueSky. My manager texted me about it. It kind of came like a bolt out of the blue. Even though I hadn’t seen Steve in many years, he had this indefatigable presence online. He’d recently moved over to Threads and I was following him; it felt like the old days of Twitter, with Steve popping up in my feed throughout the day.

I didn’t know Steve very well, but I feel like I owe a lot to him.

Steve wrote a book called Neurotribes; it was published in 2016. I don’t think it’s hyperbole to call it one of the most important books ever written about autism and the autistic community. Steve didn’t coin the term “neurodivergent” but I think he might’ve gone some way to popularizing it. He was one of the first people I’d ever heard use it. Neurotribes was pretty revolutionary when it came out. It was one of the first books to look at autism and the autistic community from a radically sympathetic perspective, expanding on this idea that an autism diagnosis exists as a single star in a constellation of possibilities, that neurodivergent people are a necessary part of the fabric of our society. That autistic people are not wrong or broken. This doesn’t feel as revolutionary now as when Steve was writing the book — I think we’re all now a little more attuned to accepting the neurodivergent among us. And that’s a lot thanks to Steve’s work.

Steve interviewed Carson and I for the book, back in 2011. He came to our house and we had lunch with him out on our patio. He met Hank; this was right before Hank was about to start Kindergarten. We were still getting our legs, our parents-of-an-autistic-kid legs, under us. Hank had only got his autism diagnosis a couple years before. I have an email from Steve, one I’ve just looked at now as I was trying to get my dates straight, and he’s wishing Hank all the best on his first day of school. He was such a kind, thoughtful guy.

Thing about disability, when you exist outside of it, when you do not have hands on experience — if you, yourself, are not disabled or you are not immediately connected to someone who is — it can sort of feel like you’re spectating. You see it all around you, but it can feel like it doesn’t affect you in a concrete way. You are an outside observer; you understand it intellectually, but that doesn’t tend to cut very deep. When we received Hank’s autism diagnosis in 2008, my wife and I abruptly stopped being spectators. We were in the community. That can be very disorienting. It can feel like you have a whole new language you need to learn. There are new politics for you to navigate. Your expectations are transformed; your social lives are immutably changed.

Steve was a big force in sending Carson and I on our path forward. We stayed in pretty regular touch after he’d interviewed us. His perspective helped form our perspectives. It was right around the time we were introduced to Steve when we were also made hip to the people at Thinking Person’s Guide To Autism. We were shown the data we needed to break from our vaccine-eschewing naturopath pediatrician. We learned that Autism Speaks — with its outwardly negative view on autism and the autistic community — was not the only resource for folks being ushered into the world of autism parenting; there were other attitudes, other ideas. This was a sea change for us, and it helped us immeasurably. Steve introduced us to Ari Ne’eman and the folks at the Autism Self Advocacy Network. Here there were models to look to, there were success stories and hope. There were whole communities — many of them made up of actually autistic adults — dedicated to improving the lives people of like Hank. Our kid was not doomed, our lives as parents were not forever ruined — as so many in the Defeat Autism Now camps would have you believe. Suddenly, the future looked brighter.

This was pretty revolutionary for Carson and I as parents. And I think we have Steve to thank for a lot of that sea change.

But my wife and I are only a few of the people whose lives were transformed by Steve’s work. I think his writing and his advocacy has reverberated through the whole disability landscape. When Neurotribes came out in 2016, I remember being so floored by it. It was like a balm, reading that book. Even if you’re not immediately affected by autism or have an autistic close to you — I recommend reading it. It will change how you view the disability.

My thoughts are with Steve’s husband and his sister. My understanding is that Steve’s death was pretty sudden, out of the blue. If his pace of writing on social media was any indication, he was in pretty fit fettle, posting lots of acerbic stuff about the GOP presidential candidate. I think his loss, like his influence, will be felt throughout the disability community and beyond. He will be sorely, sorely missed.