Scientific Partnerships with Autistics for ASD research

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For years, systems scientist Dora Raymaker and physician Christina Nicolaidis have spent Thanksgiving, Christmas and New Year’s Eve together. Though they are not exactly family, they are close, both figuratively and (in pre-pandemic times) literally: They are research collaborators, and their offices at Portland State University in Oregon are next to each other. Raymaker, who is autistic, and Nicolaidis, who is not, are best friends and use the same words to describe their connection: “We share a brain.”

Partnerships like that of the Portland pair are key to advancing autism research.

Autistic people have shaped science in many ways. Some join studies or turn to advocacy work. But others, like Raymaker, choose a direct route and become full-time scientists or consultants who collaborate with non-autistic scientists on studies. In this story, Spectrum profiles five pairs who have deepened our understanding of autism and opened up new lines of inquiry. They aim to improve healthcare delivery to autistic people, clarify public attitudes toward autism and intellectual disability, and make participation in clinical trials easier for autistic people, among other goals.

Back when Raymaker and Nicolaidis started working together, few people believed in the value of partnering with autistic people, the scientists say. “The work Christina and I have done,” Raymaker says, shows that “not only is this a thing that’s possible, but it actually improves your research.’”

In 2005, Nicolaidis joined a local parent listserv called the Portland Aspergers Network. Her 2-year-old son had been diagnosed with autism in April 2004, and she turned to the forum for help and community. One particular listserv member stood out — an autistic adult who offered advice to worried parents by recounting personal experiences and sharing solutions. Nicolaidis’ son was too young for most of the tips to be relevant, but she saved the posts to refer to as he grew up. In early 2006, she decided she wanted to meet their author.

The listserv contributor seemed interested in science, so Nicolaidis suggested setting up a journal club to discuss autism research. Raymaker, who was pursuing a master’s degree in systems science at Portland State University, quickly signed up. “She not only bit, she offered to have it in her living room,” Nicolaidis says. (Raymaker later called the gambit “adorable.”) As Raymaker and Nicolaidis pored over academic papers, Raymaker pointed out places where study protocols may not have accounted for how autistic people think. In a study of the brain’s resting states, for example, researchers had assumed autistic people would let their minds wander, or ‘daydream,’ when not engaged in a task, and so had not given explicit instructions to do so. As a result, they may have falsely suggested autistic people do not ‘daydream’ in the same way non-autistic people do.

The researchers are using similar methods to define and understand ‘autistic burnout,’ a mental health issue that has been largely neglected in the field outside the autism community, according to Raymaker. “Getting anyone to recognize this or take it seriously or think it’s something that’s not just depression has been a nonstarter,” Raymaker says. Raymaker, Nicolaidis and their colleagues interviewed 19 autistic adults and reviewed social media posts on the topic. In a study published last year, they described how burnout is likely to arise: Autistic people are often overtaxed just from trying to get by in a neurotypical world, such that additional stressors can tip them into this mental state, which is marked by exhaustion, increased sensory sensitivity and a loss of skills and independence.

Raymaker and Nicolaidis now codirect AASPIRE, which is widely considered a model for collaborative research in autism, says David Mandell, professor of psychiatry and pediatrics at the University of Pennsylvania. The pair also launched the journal Autism in Adulthood, which debuted in 2019 as the first journal focused solely on autistic adults.

Back in 1995, in an empty classroom at the University of Tokyo in Japan, undergraduate student Shin-ichiro Kumagaya started a Japanese sign language group after learning that the university did not offer a course. He is not deaf, but he has cerebral palsy, and his work on human rights for people with disabilities prompted him to want to learn to sign. One of the instructors he brought in was a student at another university named Satsuki Ayaya, who has some speech difficulties and often uses sign language to communicate. The two met in the group weekly for two years until Ayaya finished her undergraduate degree in 1997.

Nearly a decade later, in 2005, Ayaya happened upon an autistic woman’s autobiography at a bookstore, and the story reminded her of herself. She reached out to Kumagaya — by then a doctor — to ask him to recommend a medical professional who could evaluate her. In 2006, at age 31, she was diagnosed with autism. But she had trouble relating the diagnosis to some of her problems — for example, her difficulty recognizing the sensation of hunger. She started to note how and when these problems cropped up in her daily life. “I felt compelled to study myself,” she says.

Ayaya’s precise descriptions of her sensory experiences — written words “flickering” as their letters crumble into bars and curves on the page, her own voice echoing back to her from the walls of a lecture hall — have formed the basis of research questions about speech and sensory sensitivities in people with autism that she pursues with Kumagaya, who is now associate professor of Tojisha-Kenkyu at the University of Tokyo. (The two are also a couple.) In research published in 2016, they reported that autistic people’s sense of their bodies and personal space is different from that of non-autistic people’s.

In 2009, several years after Valerie Paradiz had been diagnosed with autism, she attended a meeting hosted by a drug company developing a medical test for autistic people that involved a cheek swab. Company officials wanted to know how they could make the process more comfortable for people with autism. To that end, they had reached out to the nonprofit Autism Society, where Paradiz sat on the board of directors. She volunteered to help.

In 2017, she began working with the company as a paid consultant. She traveled as often as once a month to clinical trial and community sites to educate people in the autism community about how clinical trials work and to act as their liaison with study clinics.

In her role, Paradiz suggested adding pictures to clarify written procedures — say, icons that illustrate whether a medical appointment is supposed to take place in an office or by phone — and depicting what might happen at the visit (a blood draw, an imaging test) to reduce anxiety.

She pointed out important logistical considerations: Easy parking can lower stress, as can minimizing the time a child needs to be in a crowded waiting room. Practical problems like these can determine whether a person will quit or stick with the trial.

Paradiz needs her own supports, too. She sometimes asks company officials to call her to summarize email threads to be sure she catches the relevant details. She also plans a day of rest between large meetings, as she finds them exhausting.

In 2017, Reid Caplan was working as a program coordinator at the Autistic Self Advocacy Network when their supervisor, executive director Julia Bascom, made an introduction that would catapult Caplan, who is autistic and transgender, into a second career. (Caplan uses a gender-neutral pronoun.) Bascom introduced Caplan to John Strang, who directs the gender and autism program at Children’s National Hospital in Washington, D.C. She thought Caplan could help Strang with a project on the experiences of autistic people who are gender-diverse — those whose gender identities do not align with the sex they were assigned at birth.

Caplan helped interpret the responses, including offering an understanding about autistic people’s unique experiences with ‘transitioning’ — changing one’s outward gender presentation — which often involves treatment with hormones or surgery. An autistic trans girl, for example, may not opt to look like a stereotypical girl, Caplan says — she may not change her wardrobe because she finds her clothes comfortable, or she may shun makeup because of motor issues. Earlier drafts of the paper had not addressed how such factors could lead doctors to deny autistic people gender-affirming medical care; that changed with Caplan’s feedback.

Since that project, Caplan and Strang have co-authored three additional papers and are working on a new project about autistic transgender young adults in the United States and the Netherlands. For their most recent paper, published in May 2020, they analyzed feedback from 31 neuro- and gender-diverse young people and their parents about their clinical and support preferences and needs. A total of 10 other neuro- or gender-diverse adults and 10 healthcare providers worked with Strang and Caplan, among others, to summarize the findings and come up with recommendations for neuro- and gender-diverse people’s healthcare.

The results of this effort are helping clinicians become more accepting of both different gender identities and neurodiversity, says Finn Gratton, a psychotherapist who is autistic and nonbinary.

In January 2019, Dorota Chapko interviewed for a job as a postdoctoral researcher at Heart n Soul at The Hub at Wellcome Collection in London, a research arm of an arts collective for people with autism or intellectual disability. The data scientist — she has a Ph.D. in public health — would be analyzing data for a project alongside adults with these conditions.

Chapko did not know a lot about either autism or intellectual disability. But Robyn Steward, an autistic person working on the project, appreciated her experience working with people from different cultures. Chapko had organized events in which researchers interviewed hundreds of people in communities in Scotland and two cities in India about their experiences participating in a longitudinal health study.

One of their projects, called Heart n Soul Asks, is a multimedia survey for the general public co-created with seven adults who are autistic, have intellectual disability, or both. It is designed to explore the gap between the positive things people say about individuals with disabilities and the stigma and isolation people with disabilities experience.

In May, they presented their work (virtually) at CHI 2020, an international conference on human-computer interaction whose attendees have in the past included Google and NASA.