How I decided to disclose my autism diagnosis

So many amazing people helped me on my journey to understand neurodiversity

As I disclosed in an editorial today in Science, I am autistic. I have had had my diagnosis for several years, but have only come to the conclusion to be public about it over the last year. The editorial talks about how I got my diagnosis.

The journey to be more open about this started when I went to a transformative conference on Disrupting Ableism and Advancing STEM organized by the amazing Bonnie Swenor at Johns Hopkins. I was on a panel there and really impressed by all the participants. When I signed up, I naively wasn’t expecting autistic advocates to be there, but was really impressed by many passionate folks like AJ Link, who was kind enough to talk to me afterwards. I had always felt that sharing my diagnosis would be disrespectful to those who didn’t have as many opportunities as I had, but the conference really opened my eyes about the autism spectrum and the need for awareness of difference.

I then went to the best autism researcher I knew, John Constantino, who was at WashU when I was there. He helped me understand a lot about neurodiversity and the way it works in adults. When we worked together at WashU, we only ever talked about children with autism, so it was eye-opening to hear his thoughts on how autistic traits are selected by evolution and how they can affect adult behavior in science and outside. I wasn’t expecting that, and it helped me keep going.

Then I read the great book Neurotribes and was connected to Steve Silberman by my friend Peter Hotez. Steve’s book is a must for folks interested in this, and he was very patient in talking to me about all he learned. A column that he had just written for Scientific American described the “Double Empathy” problem that many autistic adults have because we crave connections but sometimes can’t make them because of stigma that says we lack empathy and don’t actually want to connect.

Next, I reached out to Simon Baron-Cohen whose online assessments helped me further confirm my diagnosis and whose papers helped me understand how autistic traits are prevalent in science. His popular book, The Pattern Seekers: A New Theory of Human Invention, is a great introduction to the role of autism in scientific thinking. Simon was another patient teacher who helped me as I refined my ways of talking and writing about autism.

Then I was standing at the George Washington University booth at the AAAS meeting, and a book called “Nobody’s Normal” was on display. This book, by my anthropology colleague Richard Grinker, explains how all mental illnesses are on spectrums and how culture contributes to the stigma that precludes open recognition and accommodation of these differences. Richard later had lunch with me and has also helped me a lot with my writing. He has a daughter who has severe autism, so he has an amazing perspective.

After the AAAS Meeting where I found Richard’s book, I went to the Denver airport to fly home and saw Temple Grandin at the next gate. I had met her once before when WashU gave her an honorary degree and had been reading her books and watching her great biopic with Claire Danes. She was going to Cincinnati to give a talk to parents of autistic children. We talked for more than 30 min about all kinds of things, and it was inspirational, as it is when she talks to anyone.

In talking to all these superstars, I came to realize that it can be useful for people to disclose their autism diagnosis in order to lower stigma. At my stage of life and with all of the support I have received, I’m in a good position to do so. As I started doing this, I realized even more how important it is. When I give talks in front of young people, in particular, the discussions afterward are inspirational. There are so many talented, neurodivergent people who need to be included in science — and everything else. When I talked to Temple Grandin, she had just met two autistic, teenage boys who were good at math and had much to contribute to science and innovation, but she was worried they wouldn’t get to do so because of stigma and inadequate support. She famously said that an autism label could probably be applied to half of the entrepreneurs in Silicon Valley, and when I asked her about that, she said that she did say that because she wants more autistic people to have the same chance to fit in and succeed. It was hard not to join that mission.

My nervousness about the disclosure went down after all these great folks helped me understand the right words to use. Most importantly, that I was fortunate to have a form of autism that allowed me to do all the things that I have done, that I had resources growing up and supportive friends at St. Pat’s School who didn’t bully me, an amazing family that loves my quirks, and I didn’t have the additional difficulties that autistic people in other marginalized groups experience when stigma is layered on top of other types of bias. I was also fortunate to be in a position as the editor of Science where every autism expert I approached wanted to talk to me. Most autistic people don’t have all these advantages and often have much worse outcomes, as I outlined in the editorial. Still, there’s more we can do if we improve awareness and lower stigma.

It’s a journey we all should join.

I’ll be writing a lot more about this in the time ahead.