A new study finds that adults with autism receive fewer preventive services and use the emergency room more than adults without autism.
According to researchers from Oregon Health & Science University (OHSU), adults with autism, who represent about 1 percent of the adult population in the United States, report significantly worse health care experiences than their non-autistic counterparts.
“Like other adults, adults on the autism spectrum need to use health care services to prevent and treat illness,” said Christina Nicolaidis, M.D., M.P.H., principal investigator and associate professor of medicine at OHSU.
“As a primary care provider, I know that our health care system is not always set up to offer high-quality care to adults on the spectrum, however, I was saddened to see how large the disparities were. We really need to find better ways to serve them.”
For the study, published in the Journal of General Internal Medicine, the researchers surveyed 209 autistic adults and 228 non-autistic adults through a secure registration system for online studies.
Autistic adults reported greater unmet health care needs, higher use of the emergency department, and lower rates of preventive services such as Pap smears, the researchers said.
They also reported poorer satisfaction with provider communication and lower comfort in navigating the health care system or managing their health.
“While I am discouraged by the findings, I am also encouraged by the direct involvement of the autistic community in all parts of this project,” said Dora Raymaker, community co-director of the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE), a partnership where academic investigators, autistic adults and other community members work together.
“In order to ensure research that is truly useful to autistic adults, it is critical to involve us directly in the process.”
The researchers also note that their study has implications related to changes in the upcoming new version of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), which combined Autistic Disorder, Asperger’s Disorder, and Pervasive Developmental Disorder Not Otherwise Specified into one new category of Autism Spectrum Disorder.
There has been some controversy over the new criteria among some advocates and academics, according to the researchers. They point out that some studies predict a significant reduction in the number of people who will meet the new criteria — especially among those with Asperger’s disorder or without intellectual disabilities.
“The existence of health care disparities in our sample, most of whom had diagnoses of Asperger’s and/or high educational attainment, highlights the possible negative consequences of stricter criteria,” Nicolaidis said.
“Not having a diagnosis may deprive patients and their providers of insights, strategies, and accommodations to improve health care experiences.”