Portland women create better primary care experience for adults with autism

aasoirePortland, Ore. — While trying to find her way through the best care she could give for her 3-year-old son who was diagnosed with autism, Christina Nicolaidis chanced upon meeting Dona Raymaker, a 43-year-old with ASD. It wasn’t long before Nicolaidis realized how daunting a task must it was for adults like Raymaker to navigate through the country’s healthcare. So they sat down and tried to find a solution.

Nicolaidis is a doctor at the Oregon Health & Science University, where her work experiences on health care research are mainly on minorities and domestic violence victims. She later on found through Raymaker that adults with autism find it extremely difficult to avail of primary care. Raymaker told:

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

To address that problem, Nicolaidis and Raymaker soon founded the Academic Autism Spectrum Partnership in Research and Education— a Portland State University-based research center. But the duo found themselves having a difficulty in looking for funding for their work without a research study to back their claim— that there is a need to address the difficulties adults with autism face in trying to avail of primary health care.

With the help of a research team they created, Nicolaidis and Raymaker conducted a survey on 400 individuals with and without autism to find out how their experiences were with the country’s health care system— including their experiences on communicating with doctors, as well as how they felt about going to medical and dental appointments.

As expected, the results suggest that adults with autism mostly skip on routine check-ups as well as vaccinations because they were too anxious about having to deal with the health care professionals. As a result, they had higher instances of going to the emergency room.

The researched helped Nicolaidis and Raymaker receive funding from the National Institutes of Health.

The two women later on came up with AASPIRE Healthcare Toolkit, an online resource for both the adults with autism as well as their health care providers, aimed at helping adults with ASD get a better primary health care experience.

Nicolaidis and Raymaker are now moving on to the next phase of their work— which is to determine if their research was effective.

Contributed by Althea Estrella Violeta

Source: Casey Parks on OregonLive: Portland duo tries to make the world of medicine less daunting for adults with autism

AASPIRE website: AASPIRE Healthcare Tolkit. Primary Care Resources for Adults on the Autism Spectrum and their Primary Care Providers