About That Mensch, Steve Silberman, and How A lot We Miss Him — THINKING PERSON’S GUIDE TO AUTISM
It is still incomprehensible that we lost Steve Silberman more than a year ago. While got it together well enough to speak at his memorial service, it has taken me until now to be able to share my tribute to him, from that ceremony.
For those who didn’t know Steve, please read his compassionate history of autism, NeuroTribes—recently reissued in a 10th anniversary edition—or look up his voluminous writings on autism, science, and The Grateful Dead. In the meantime, here is what Steve meant to me, my family, and our community.
The reason I’m here is that my son, Leo Rosa, is “the boy who loved green straws” from Steve’s book NeuroTribes. I met Steve during the writing of NeuroTribes, when he spent so much time with my family, and especially with my autistic son, Leo.
I miss Steve so much, and part of the difficulty of coming today is knowing that, once we get through this ceremony, he really is gone. Probably many of you were struggling with this feeling as well, in coming here today. Steve was such a mensch. I miss him so much. Any of you who know him, any of you who met him, know he was a well of bottomless compassion. I still can’t believe he’s gone. And I’m so sorry.
I absolutely love the fact that Steve wrote NeuroTribes in the spirit of tikkun olam, the Jewish concept of healing the broken world—which is so important right now, even more than ever. He said that writing NeuroTribes merged his interest in neuroscience, his history in living as a gay man, and his identifying with the marginalization of neurodivergent people because of the marginalization that he himself had experienced.
I’m the parent of three kids who are combinations of neurodivergent and queer, so Steve’s mission hits me right in my marrow. I am so grateful for the fact that he saw my family and my kids for who we are, wrote about how we lived our lives, not the sad ways other journalists tend to write so negatively about autistic people, without understanding how they are and who they are.
Steve used his well of empathy—which suffused his entire being—to show autistic and neurodivergent people, like my son and unlike my son, as fully formed humans with rights and delights and happiness and love, with families who loved them and people who loved them, and that they loved back.
Again, to come back to the concept of tikkun olam, our communities, we need that healing right now. I’m just so sad that Steve’s not here to help do that, so we’re going to have to do it all ourselves. Please take that to heart. Tikkun olam. We’re here to heal the broken world.
Like I said, if you have an autistic child or if you’re autistic yourself, people who don’t know any better tend to have assumptions about you, and how awful your life must be, and how horrible things must be, and what a horrible life you must lead. I’ve tried really hard, and Steve tried his damnedest, to show instead the joy in our lives alongside the struggles. And also that most of the struggles autistic people like my son face are from the medical establishment. They’re from media bias. They’re from ableism. They’re from negative assumptions. They’re not intrinsic to being autistic. It’s hard to be autistic because the world makes it hard, for the most part.
Steve showed people that autistic people like my son, people who require 24/7 support and supervision, can still lead fantastic lives. And also they also have a lot in common with autistic people who don’t need as much support, because of what it means to be autistic. People may say, well, your son is nothing like my dear friend Eric Garcia, who will be speaking here later, or my dear friend and co-editor at Thinking Person’s Guide to Autism, Carol Greenberg, or my dear friend Rina Kor, all of whom are here today.
The thing is, if you listen to these autistic friends tell you about their experiences—because unlike my son, they can do that—and like the autistic people Steve talked to and about in NeuroTribes, there are so many things that they have in common. But too many people don’t see those autistic commonalities because of the externalities that they don’t share. Because people can be superficial. We’re pattern matchers. We see what we see, and we don’t look deeper. Steve showed the actual patterns below the surface and what autistic commonalities were like. For that, I will always be grateful.
I have to tell you one story about the assumptions that people have. My dear older brother is an Army Ranger, trained to be the elite task force of the Army. His Ranger training sessions were so brutal that members of his cohort lost digits to frostbite. Yet, despite all the work that Steve has done, despite all the work that I have done to debunk negative autism stereotypes, I one heard my own brother tell people that watching me parent Leo was the hardest thing he’d ever seen. (He said I could say this, by the way.)
Sigh. If you can take anything away from Steve seeing us, from seeing who we really are, it should be that our lives can be wonderful. Autistic people and their families, we have as much capacity for joy and connection and love and delight as anybody else, but you can’t judge us, and you can’t judge autistic people by non-autistic standards. I think that that is truly what you should take away from NeuroTribes.
I will tell you that my son has been interviewed, he’s been featured in media so many times that every time—Even just two weeks ago, I talked to a reporter from a major outlet, and then the article came out and was like, “[grunts] It’s all about the suffering, it’s about the difficulty, it’s about the hardness.” It’s so hard to dispell these stereotypes!
I hope that if you read NeuroTribes, you understood that my family is not defined by suffering. That is not who autistic people are, inherently. I’m grateful to Steve for making the complex humanity of autistic people so clear. Steve kept a picture by his computer of Leo positing by some graffiti that read, “Life is Good,” because Steve wanted to remember the mission of writing the book, and who he was writing it about, and who he was writing it for. That’s who Steve was.
Another thing that made me so grateful to Steve is that he never patronized Leo. He knew who Leo was. He talked to Leo the same way he would talk to anyone else. Steve would also understand that Leo is not here today because long serious ceremonies are not his jam. Sitting in a nice quiet space for an hour, no, Leo’s not going to do that. Steve would get that not being able to participate is not the same as not caring.
Steve was also a giddy, sassy gossip. [laughter] Any time the phone rang and it was Steve, I always thought, “Oh, this is going to be good.” So often, he would say, “Don’t tell anybody but…” with such glee—as when he found out that his dear friend Oliver Sacks was going to be writing the foreword to NeuroTribes, even though Oliver knew his own days were numbered due to illness. Steve was so bittersweetly joyful, with utter excitement of, “Oliver’s going to write the introduction to my book!” It was lovely to witness.
Mostly, he was a good friend. And, again, a mensch. The last thing I ever told him was, “You know what, Steve, you’re the best,” because he was.
Thank you.
Shannon Rosa, Carol Greenburg, and Eric Garcia at Steve’s memorial service
