Autistic people join autism project – as research partners
Kaiser Permanente investigators provide training in research methods
By Jan Greene
April is Autism Acceptance Month
A group of Kaiser Permanente investigators is inviting their study subjects — autistic people — to participate as research partners, providing their own unique perspective on being autistic. Their initial focus is on gender, sexuality, and reproductive health in autism, but once trained, the advisers could help shape any future research project.
“We wanted to give people skills so that if they’re interested, they could become research partners for any project,” said Lisa Croen, PhD, director of the Autism Research Program of the Kaiser Permanente Division of Research (DOR). “They could be involved at every stage from the generation of the research idea to the execution of the project, writing up the results and figuring out how to disseminate them, particularly to the affected community.”
As part of that effort, a dozen autistic people in the San Francisco Bay Area recently joined a 6-hour online class to learn about the research process and how they can be a part of it. The class was moderated by Morrigan Hunter, a Portland, Oregon-based facilitator who is also autistic.
“It’s really rewarding to do this kind of work because it was clear how much the participants want to be involved with research,” Hunter said. “There were so many things they were really passionate about, and researchers may never have asked what is important to them before. This training could provide them with tools to become researchers themselves.”
The training was developed as part of a project on gender, sexuality, and reproductive health in autism, sponsored by the Autism Intervention Research Network on Physical Health (AIR-P). As a leader of that work, DOR’s autism research team is identifying topics that researchers should be exploring. The team works with a 6-person group of autistic people serving as advisers on the research project; their contributions include collaborating on the research training design.
The course offers a basic grounding in research, said Maria Massolo, PhD, a member of the Autism Research Program team. It covers topics such as what research is, how to do it right, collaboration and dissemination, and the ethics of research. “I believe strongly this is a way to democratize science,” Massolo said.
The training sessions themselves accommodated the needs of participants. Autistic people may differ in communication style from non-autistic people, such as finding it difficult to focus in a situation with many people or distractions. For one course participant, this meant getting one-on-one sessions instead of joining the group.
Some of the participants benefited from the virtual format, which allowed them to be as involved in the conversation as they wished, to warm up to the situation, leave cameras on or off, or to type responses into a chat rather than making a verbal comment, said Colette Blair, assistant director of supported employment services with East Bay Innovations, a community-based nonprofit that supports autistic people and individuals with disabilities. Blair helped identify clients interested in becoming research partners.
The participants also offered some helpful suggestions for future training sessions — such as adding captions so they can both listen to and read the material — and for research itself, such as designing 2-page, simplified results summaries of research that anyone can understand.
The course was designed not just to teach research basics, but to build trust between the research team and potential future partners, Massolo said. “It’s not easy to build trust with people who have been discriminated against all their lives, bullied, and labeled,” she said. “We treated every question they had seriously and respectfully.”
Gender, sexuality focus group
After the research training, the participants joined a 3-hour focus group to discuss gender, sexuality, and reproductive health of autistic people, moderated by an autistic person, Reid Caplan. Their task was to identify questions that research should pursue. The group suggested topics such as how autistic people learn about sexuality and consent, whether their first sexual experience might be different from those of non-autistic people, and stereotypical portrayals of autistic people as being uninterested in romance.
“People with developmental disabilities for a long time were considered nonsexual, and some people do define themselves as asexual, but that doesn’t mean they are not capable of having romantic relationships and attractions,” Massolo said. “The group also talked about boundaries and red flags in relationships, and how to establish friendships with non-autistic people.”
The focus group experience gave participants a chance to talk about topics that are important but hard to discuss, particularly if a person doesn’t have a big social network. “Just to know that there are other people out there like them who are also experiencing these things, I think that was really nice,” Blair said.
The idea that research is not something that is done somewhere by other people, but that they can think about themselves in that role is really empowering.
Incorporating the perspective of the community being studied is becoming more widespread in medical research, said Jennifer Ames, PhD, a staff scientist with the DOR Autism Research Program. “The whole idea of community-based participatory research is growing, particularly in autism research,” Ames said. “We’re hoping to build a national database where people can express an interest in being a research partner on particular topics and investigators can contact them.”
Hunter hopes having autistic people be involved in the early stages of research will generate investigations most relevant to the autism community. “The idea that research is not something that is done somewhere by other people, but that they can think about themselves in that role is really empowering,” Hunter said.
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About the Kaiser Permanente Division of Research
The Kaiser Permanente Division of Research conducts, publishes and disseminates epidemiologic and health services research to improve the health and medical care of Kaiser Permanente members and society at large. It seeks to understand the determinants of illness and well-being, and to improve the quality and cost-effectiveness of health care. Currently, DOR’s 600-plus staff is working on more than 450 epidemiological and health services research projects. For more information, visit divisionofresearch.kaiserpermanente.org or follow us @KPDOR.
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