Portland State Magazine Spring 2015

22 PORTLAND STATE MAGAZINE SPRING 2015 ONE IS a newly minted Ph.D. with autism. One prac- tices internal medicine and has a child with autism. When they joined forces—almost by accident—nine years ago, Dora Raymaker and Christina Nicolaidis tapped a potent mix of clinical expertise, social activism and personal experience. Theirs is a unique story with some made-for-Holly- wood moments. More importantly, the pair already is producing results that could have far-reaching impacts for the growing number of autistic adults and other people with disabilities. Nicolaidis, a professor of social work at PSU and phy- sician at Oregon Health & Science University, had been studying health issues among African Americans and Latinos when her son was diagnosed with autism at age 3. She joined an Internet chat site with other parents of autistic children, and soon noticed that one participant wasn’t posting her problems, but rather her solutions as an autistic adult. (Both Raymaker and Nicolaidis prefer “identity first” usage: autistic adult, instead of “people first” usage: an adult with autism.) Intrigued by this unique opportunity to learn about autism, Nicolaidis collected the posts and was deter- mined to meet Raymaker, but she was unsure how to make that happen. “I knew that if I asked her out for coffee, she would say absolutely not,” Nicolaidis says. Raymaker’s interests are clearly more academic than social. Instead, Nicolaidis invited Raymaker to become part of a “journal club” to help review scientific articles on autism. “She was sneaky,” says Raymaker, who has a back- ground in fine arts and computer programming and is a scrappy advocate for people with disabilities. At the time, she was a graduate student at PSU, fascinated by complex systems and hoping to apply her skills to “computational intelligence”—robots that think, in other words. But as a woman with a disability, Raymaker says, she got little encouragement. Then came the offer from Nicolaidis. A door opened, Raymaker walked through it, and a partner- ship was born. RAYMAKER’S critiques of the state of autism research echoed what Nicolaidis was hearing about studies of other minority groups. Too little participation and buy-in from the subjects, along with “dehumanizing” treatment, was hurting the results. “It wasn’t getting the right answers,” Nicolaidis says. The more she talked with Raymaker, the more convinced she became that it was time to take autism research in a new direction. There were volumes—thousands of pages—about autism in children: how to “treat” it, how to prevent it, how to teach them, how to manage their behavior. There was almost nothing about autistic adults. “The reality is, there are a lot of individuals on the autism spectrum,” Nicolaidis says, speaking from the perspective of a social scientist who thrives on data and of a parent concerned about the future of her child. “And they grow up.” Together, Nicolaidis and Raymaker started the Academic Autism Spectrum Partnership in Research and Education at PSU. The model they adopted—community-based participatory research—ensures that people with autism aren’t just studied, but also are involved in all phases of the study: selecting subjects, designing the project, analyzing the results, disseminating findings, deciding on next steps. The goal: a more accommodating society for autistic adults. For both women, it has been a personal and a professional quest. “I want my child to live in a world that actually supports him,” Nicolaidis says. “I’m just a troublemaker,” Raymaker adds with a smile. AUTISM, which affects an estimated 1 percent of the population, is hard to pin down. Most experts talk about autism as a “spectrum”—ranging from people who have extremely low cognitive and verbal skills to verified geniuses. Raymaker and Nicolaidis have come to the conclusion that WR I T T E N B Y HARRY E S T EVE Teaming up on autism A chance meeting becomes a mission to help autistic adults.