I was the “different” kid. I had intense interests that I went on monologues about, I missed social cues, and I checked out of conversations to stare at the wall while my mind wandered. Later, when my kids were small, they used to wonder why I watched the television without turning it on.
But it wasn’t until I was 53 that I was officially diagnosed with autism. Increased rates of autism diagnosis — now 1 out of 36 children in the U.S. — are due to a redefinition of the autism spectrum and a welcome recognition that autism has been underdiagnosed and underaccommodated.
Since my diagnosis, which I didn’t disclose for six years, I’ve come to recognize the contributions to biomedicine made by autistic scientists — and to learn about the hardships that many of them have suffered, much more so than I did. These hardships have only been magnified in the recent political debate over the confirmation of Robert F. Kennedy Jr., who has spread the long-debunked idea that vaccines cause autism, despite ample evidence to refute this idea for good.
I also learned about the tension over how to study, address, and talk about autism as a difference, disorder, or disability — and the additional burden this conflict can place on autistic members of the scientific community. I’ve talked to many who have managed to make important contributions despite these challenges, and the common theme is choosing the right collaborators. At a time when we need all the best minds doing and supporting science, building a much better scientific enterprise means embracing the idea of collaboration across all aspects of neurodiversity.
Since disclosing my diagnosis, I’ve heard from many members of the biomedical community who have been diagnosed with autism — or suspect they are autistic — asking for advice. How do they get a diagnosis as an adult? Should they disclose their diagnosis? How do they find mentors and laboratories that will accept them? Many want a diagnosis because of challenges with functioning socially and feeling welcomed in the scientific enterprise.
I mostly try to direct them to folks with more experience; like most autistic scientists before me, I masked my autism for 59 years, and although my diagnosis explained many things and has been a godsend, it came up in a 360-degree professional review, not because I sought it out directly. So, I’m mostly just an expert on apologizing for missing a nonverbal cue or being overly blunt and not realizing it. But I do usually point out that the main reason I have been able to do the things I’ve done is by choosing the right partners in life and work, particularly people who make up for my weaknesses.
Autistic traits include an inability to pick up on nonverbal cues, challenges in knowing how to end conversations, and difficulty communicating through body language, vocal tone modulation, and facial expressions. Also, autistic people experience the “double empathy problem,” where we have low cognitive empathy (the ability to perceive others’ feelings), but high emotional empathy, which is the ability to feel what someone else is feeling — if you know what it is. The double empathy problem causes others to assume we don’t want to connect when we actually crave it. Partners and collaborators who make up for these differences are often extroverts and always folks with high cognitive empathy who can communicate nonverbally. My whole life I have sought out partners and collaborators with these traits, including my spouse, closest friends, and my research mentors. I certainly didn’t make a conscious decision to do this, and I was curious as to whether there is a pattern here that can inform how to build a scientific enterprise that is more accommodating of neurodiversity.
Greg Siegle, a professor of psychiatry at the University of Pittsburgh, is autistic and studies autism. His lab is using neuroimaging to understand why when autistic people have something emotional happen to us, we’re sometimes highly reactive or, conversely, completely unexpressive (and sometimes we react in ways that don’t seem unusual). This causes others to conclude, understandably but incorrectly, that we’re not experiencing an emotion or we’re out of control. Siegle was a faculty member for 18 years before he got his diagnosis. During that time, he struggled with managing conflicts in his research group and with his faculty colleagues.
When I asked Siegle for ideas about how to better include autistic researchers in the scientific enterprise, he said it was crucial to be “intentional about creating a lab environment that allows you to be who you are, and that is easier said than done. We know that if we spend all of our time masking, that’s going to be all of our effort masking and we won’t get things done. And at the same time, we can’t have people running screaming from our labs all the time. So creating an intentional lab environment is currently as much an art as a science, but putting time into that I would suggest is well worth it.”
Siegle has also thought a lot about young researchers disclosing their autism. “It does have positives and negatives. Disclosing that you are autistic is actually quite different than disclosing what it means for people to work with you.” He stresses that scientists can explain the right ways to work together without making a full disclosure of autism. For his part, he has a “users guide” for interacting with him that he gives to his mentees and collaborators.
Emily Hotez is a non-autistic researcher at UCLA who has an autistic sister with high support needs and agrees that more disclosure would be ideal in a world with more understanding. “Experiencing stigma is really taxing on mental health,” she said. “We know from science that even anticipating stigma can activate similar stress responses in the body and be equally damaging to mental health.” This makes disclosure intimidating. But the alternative is not great, either. “We see that some studies find that 75% of autistic individuals engage in masking,” Hotez said. “Autistic women in particular engage in masking or camouflaging, which … is very fatiguing. It’s also been linked to a host of really serious negative mental and physical health outcomes.”
Lauren Schiff is a non-autistic OB-GYN professor at the University of North Carolina who has an autistic son. Schiff recently wrote an article for the New England Journal of Medicine providing ideas for giving sensitive care to autistic patients. She agreed with Siegle and Hotez about disclosure. “I think that this question is really important,” she said, “because — similar to being a patient and going into a clinic environment or a health care environment — when you’re in your work environment and it’s also a scientific or medical related environment, there’s this double whammy of having expectations that people around you should understand or should be flexible about your needs. And then when they aren’t, it almost seems even more of a challenge to overcome that.”
Being an autistic researcher in biomedicine also requires scientists to work in an environment that also studies autism itself. It’s no secret that there is a lot of tension within the autism community between the view that autism is a neurological difference that should be accommodated with a social model and the view that autism is a disorder to be studied and even corrected using a medical model. Autistic researchers are likely to be verbal without a need for constant care and therefore likely to ascribe to the social model. But they work in an environment where excellent research on the genetics and possible interventions are being studied in neighboring labs — or potentially even their own.
This places an additional burden on autistic researchers who have to think about the fact that some of their colleagues may want to eliminate their identity. When I asked Siegle about this, he said, “I think that it is reasonable to ask that if we are working in an environment filled with people who are not like us, we learn to understand the people who are around us. So even if we don’t subscribe to a medical model, we can be aware of the ties between the medical and social understandings of autism and ideally strive to see how they’re not in contradiction.”
But he sees the neurotypical autism researchers as playing a role. “I’m also going to suggest,” he said, “we take some level of care in not imposing emotional intellectual labor on autistic people just because they’re autistic. And by that, what I mean is we shouldn’t need to be experts in everything. Just because we’re autistic doesn’t mean we’re experts in all aspects of autism. … We should be allowed to go do the things we are hired to do with the same level of reasonable and socially appropriate understanding of our colleagues that other people have.”
Most neurotypical researchers absolutely do want to understand their autistic peers. Schiff told me that when she talks about ways to care for autistic patients, she is bombarded by questions about how to do so better. Similarly, Siegle says moving beyond the images of Rain Man and other strong cultural images is crucial. When I asked him what he says when someone says he doesn’t look autistic (a question many of us get frequently), he said, “I really like turning that question back on people and saying, ‘So what do you think an autistic person looks like, and where are you getting that?’”
Almost everyone I talk to says that more success for autistic researchers comes down to collaboration. Autistic researchers need to collaborate more with neurotypical researchers whose traits complement theirs. (For many of us, Siegle says, “this will be social skills. So you hire a coordinator who’s particularly good at them.”) Neurotypical researchers need to collaborate with autistic researchers to understand the wide range of the autism spectrum and the changes in ways of thinking about it over the years. And autistic researchers need to collaborate with each other to promote awareness rather than conflict over which model of neurodiversity is the best.
It’s a lot to hope for. “I think it would be ideal to have the autism field come together and have a more unified message that is aligned with neurodiversity and is aligned with science and doesn’t include misinformation,” Hotez said. “But maybe it’s optimistic … to think that that could happen anytime soon.”
She’s right that it’s a huge challenge, one that can seem insurmountable. But when I asked Siegle how he responded to people who challenged his view of autism, he said, “we are all entitled to think about autism and pretty much everything else in a different way than other people do. We have people with different levels of care or who need different levels of care. We have people who are capable of different kinds of perspectives, and at least I’m making it my business to try and call all of them valid and valuable.”
So am I. If we can find a way to do that more frequently, we can build a stronger scientific enterprise that includes everyone and produces valuable, actionable knowledge about neurodiversity.
Holden Thorp is editor-in-chief of Science and professor of chemistry and medicine at George Washington University.