Last week, AASPIRE (Academic Autism Spectrum Partnership in Research and Education) launched an online healthcare toolkit to provide resources to adults on the autism spectrum and their primary care providers.
According to their website, the toolkit “has information and worksheets for adults on the autism spectrum, supporters, and healthcare providers. It focuses on primary healthcare, or healthcare with a regular doctor. The resources on this site are meant to improve the healthcare of autistic adults.”
The toolkit was funded by a grant from the National Institute of Mental Health. The research for the project was conducted in multiple steps.
“We did a variety of different studies to create the tools, and then we did a study to evaluate the toolkit, and then we used all that data to finalize the toolkit, which is what’s available right now online,” Chrintina Nicolaidis, one of the project’s principal investigators, said.
What sets this study apart from many others regarding autism at Portland State, according to Dora Raymaker, the project’s other principal investigator, is that “this research actually involves autistic people in it and looks at what they want and not what some authority thinks they want.”
The toolkit also features an Autism Awareness Healthcare Accommodations Tool, or AAHAT, where “the patient or the supporter fills out a survey, and then the computer takes their answers and creates a report for the healthcare provider about what strategies and what accommodations are going to be helpful in providing care,” Nicolaidis said. According to Nicolaidis, this is what they’ve done the most studies about.
Raymaker believes that the fact that AASPIRE has begun doing research that includes autistic people and their wants and needs is more interesting and important than the toolkit itself.
“I think our projects don’t try to pretend that there isn’t a connection between science and [social] policy. We want our research to change policy,” Raymaker said. “And maybe somewhere down the line, the healthcare system starts to become more friendly toward people who are being shoved to the margins.”
The toolkit emphasizes resources for adults on the autism spectrum.
“It’s pretty clear that adults on the autism spectrum experience a lot of health disparities and there’s a lot of challenges to getting them good healthcare,” Nicolaidis said.
Raymaker said that pediatric healthcare is more set up to deal with children with disabilities and children on the autism spectrum.
“The adult healthcare system is not set up to deal with any of that,” Raymaker said. “So there’s a lot of that stuff that happens around transition when you have people who are aging out of the pediatric system, but there isn’t any real support for adults with disabilities inside of the adult healthcare system.”
AASPIRE has no definite plans moving forward, but they hope that the healthcare toolkit will help many autistic adults and healthcare providers, including those at PSU.