OHSU Investigates Healthcare Experiences for People with Autism

Researchers hope to develop a toolkit to help people improve their experiences

November 30, 2011 -- Researchers at OHSU are developing a toolkit to deal with the barriers faced by people with autism in the healthcare system.

“We're talking about improving primary care of autistic adults, not autism treatment,” said Dr. Christina Nicolaidis, associate professor of medicine, public health and preventive medicine at OHSU. Together with Dora Raymaker, she created a research project known as the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE), a community-based participatory research approach funded by the National Institute of Mental Health. “We really have the autistic self-advocates at the core of our mission.”

Nicolaidis, whose son was diagnosed with autism, had prior experience with community-based research focusing on the health of African-American and Latino populations.

Before receiving this grant, AASPIRE conducted a pilot study comparing the health outcomes of adults with autism to non-autistic adults with and without disabilities. That study, awaiting publication, found that adults across the autistic spectrum were more likely to have unmet healthcare needs, less likely to receive preventive care (such as pap smears) and had a higher chance of seeking care in emergency rooms.

The primary barriers to seeking basic care were communication and transportation. And, even the way exam rooms are set up or lit can affect an autistic patient's experience, because many people with autism have sensory issues that make it difficult to stay calm in brightly-lit or loud environments.

“Many primary care providers don't feel comfortable with their own knowledge or skills of autism,” Nicolaidis said. And, most don't see enough autistic patients to justify taking continuing medical education courses to learn how to accommodate this population. Such training may not even be helpful because the autistic population is so heterogeneous.

AASPIRE is developing a toolkit that will enable patients to inform physicians about their needs, assisting them in the communication process -- from the time the appointment is made through the process of referrals or after care.

Raymaker, who is autistic herself, responded to questions from The Lund Report via e-mail because she cannot do phone interviews. Asked about her own experiences with the healthcare system, she wrote, “Ironically, I don't really get healthcare and have had virtually no experiences with the healthcare system. Those few experiences I've had have been confusing and frustrating. The primary barriers that keep me from getting any healthcare are inadequate support, and an inability to navigate the healthcare system (i.e. I need support to navigate the system).”

Because she received support, Raymaker was able to see a dentist for the first time in 25 years that she still sees. However, she’s been unable to get medical care because the program that supported her in finding those resources lost its funding. “I lost the support before I could find a doctor so I don't have one. I try to stay healthy by having a healthy lifestyle and hope for the best.”

 

TO LEARN MORE:

Visit AASPIRE's website.

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Comments

I would be interested in a follow-up to this story. Has such a toolkit been developed? Has it been tested at OHSU and other venues? How does it differ from toolkits for people with other disabilities? Tatiana Terdal