Navigating the health care world is hard for anybody. For individuals on the autism spectrum, even calling to make a doctor’s appointment can feel impossible.

Adults with autism are less likely to go in for preventative procedures such as pap smears and tetanus shots. Many say they have skipped medical and counseling appointments they felt they needed. But people on the spectrum use the emergency room twice as often as typically-developing people.

Researchers didn’t know any of that a decade ago when Christina Nicolaidis’s 3-year-old son was diagnosed.

Nicolaidis, the physician and professor who would later go on to identify those disparities, was terrified. Doctors told her if she acted quickly, she could “fix” her son, she said. Nicolaidis met with every kind of therapist in Portland, Ore. She read books and research articles. But the efforts left her more disheartened: the experts often disagreed.

Then she met Dora Raymaker, and everything changed.

Nicolaidis was still looking for information to help her son when she began talking to Raymaker on a listserv for parents of children diagnosed with autism. Raymaker wasn’t a parent. She was a woman with autism who had accidentally signed up for the online group. But as parents posed questions, Raymaker did her best to offer answers based on her own experiences.

Raymaker’s posts impressed Nicolaidis, and the women began talking. Their conversation moved on to what it’s like to be an adult with autism.

Professionally, Nicolaidis had not had much experience with adults with autism. Her health care research focused on African Americans, Latinos and victims of domestic violence. As the women talked, Nicolaidis realized the autism community had the same frustrations as other marginalized groups she had researched.

“Like African Americans, autistic adults complained that research was being done on them, not with them,” Nicolaidis said. “They said the findings often misunderstood their culture or included disrespectful pieces.”

As the women talked, Nicolaidis began to look at her son differently. She started looking at her work as an Oregon Health & Science University doctor differently, too. People with autism didn’t need to be “fixed.” They needed to be made equal partners in the research process, she said.

Together, Raymaker and Nicolaidis created the Academic Autism Spectrum Partnership in Research and Education, an autism research center based at Portland State University. Their goal: create better health care experiences for people on the autism spectrum.

Their work began slowly. Though federal and private researchers spend more than $400 million a year on autism studies, most of that money goes to research on children. Little work existed about adults’ health-care experiences.

That lack of research meant people working to fix the problems couldn’t win grants to pay for their work. Foundation leaders told Nicolaidis and Raymaker they couldn’t give money until research showed that disparities really existed for patients with autism.

“I had thought it was self-evident,” said Raymaker, now a 43-year-old systems science Ph.D candidate at Portland State University.

Nicolaidis and Raymaker created a research team of other people with autism. The team surveyed more than 400 people with and without autism about their experiences with health care. They asked about communication with doctors, about chronic conditions and about respondents’ confidence going to dental and medical appointments.

The results were grim. People on the spectrum said they had trouble communicating with and trusting their doctors. They struggled to manage chronic pains and fatigue. They avoided routine check-ups and vaccines. But they reported higher instances of using the emergency room — a sign, Nicolaidis said, “that primary care is failing to work.”

That research helped Nicolaidis and Raymaker win a grant from the National Institutes of Health to work on solutions. Last month, their team debuted its biggest project yet: an online interactive toolkit for patients on the spectrum, as well as a toolkit for doctors.

The toolkit includes several checklists, designed to guide them through basic interactions with doctors’ offices and hospitals. One walks patients through the process of finding and booking an appointment with a primary care doctor.

“A lot of us don’t know what to say to make an appointment,” Raymaker said. “You call, and then they ask a question and you have to hang up and feel awful.”

For the interactive portion of the toolkit, patients fill out an extensive multiple-choice questionnaire. The program takes those answers and produces a report patients can give doctors to make appointments go more smoothly.

For instance, patients can indicate that a doctor should avoid medical terms, use diagrams or speak in short sentences. Or they can remind doctors that they may ask a lot more questions than the typical patient.

The toolkit includes space for patients to share what types of waiting rooms may make them anxious. For instance, they could check a box that asks health care workers to turn off music and televisions. They can also use the report to request a dimly lit room.

The team also created a website and advice for doctors treating people with autism.

The free toolkit launched in December. Now, Raymaker and Nicolaidis are applying for grants for the next phase — a study to determine whether the report has actually helped.

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