Gaps in Healthcare System Seen for Adults With Autism

Adults with autism appear to be at increased risk of hospitalization and emergency treatment compared with adults without the condition, according to a new study that highlights the complex needs of these patients when it comes to healthcare.

Reporting their findings this month in the journal Autism, the researchers say the results suggest that primary care physicians in particular could be doing more to treat these patients.

“Autistic adults are a population within the health care system that is growing,” said Daniel Gilmore, RD, a doctoral student at the Ohio State University, in Columbus, and the lead author of the study, published online December 9 in Autism. Each year, approximately 50,000 autistic individuals in the United States reach adulthood, the authors write, citing 2017 statistics from the Interagency Autism Coordinating Committee of the US Department of Health and Human Services. “These individuals have unique healthcare needs, and they’re needs that the current healthcare system in the United States is woefully unprepared to meet,” Gilmore told Medscape.

Daniel Gilmore, RD

For example, Gilmore said, an autistic adult may require alternative methods of communicating with their healthcare providers or may need treatment in a setting that is not overly stimulating from a sensory perspective. “There are relatively few healthcare providers who are trained to provide this kind of tailored care,” he said.

In a systematic review of the literature, Gilmore and colleagues culled information from 16 previously published studies on the use of healthcare services by autistic adults compared to a population of nonautistic adults. They looked at five health care scenarios:

  • Hospitalization: Autistic adults were more likely to be hospitalized than the comparison groups, including adults with attention-deficit/hyperactivity disorder (ADHD), according to several studies. One study reported higher rates of hospitalization after a visit to the emergency department (ED).

  • Outpatient mental health: Studies consistently found that autistic adults used more mental health services, including a significantly higher odds of using outpatient mental health services, higher mean number of visits, and greater likelihood of case management for mental health conditions compared with nonautistic adults.

  • Preventive services: Three studies found that autistic adults were significantly less likely to receive pelvic exams and cervical cancer screenings compared to controls and ADHD comparison groups. However, two studies found that autistic adults were significantly more likely to receive influenza vaccinations than controls and people with ADHD.

  • Primary care: In two studies, autistic adults had a significantly higher odds of using primary care services compared to either controls or those with ADHD.

  • ED use: Of the 12 studies that examined ED use, one found that autistic adults used emergency care at significantly lower rates than adults with other intellectual disabilities, while two found they had equal or lower ED use compared with adults with ADHD. Three studies found higher ED use among autistic adults compared to controls, and six found no statistically significant difference in ED use.

In other patient populations, increased use of primary care generally is linked with less frequent use of services like the ED, but Gilmore’s group did not observe that pattern — suggesting that primary care services may not be fully meeting the healthcare needs of autistic adults, he said.

The study findings are “very much in line with what many of us already believed,” said Christina Nicolaidis, MD, MPH, a professor and senior scholar in social determinants of health at Portland State University, in Oregon, and the co-director of the Academic Autism Spectrum Partnership in Research and Education (AASPIRE). “Even though they’re getting primary care, there’s a lot of barriers for them to get effective, high-quality primary care.”

These barriers may include patient fear or anxiety, not being able to process information fast enough to participate in real-time discussions about healthcare, concern about cost, facilities causing sensory issues, and difficulty communicating with providers, according to a 2017 study in Autism Nicolaidis co-authored that surveyed 209 autistic adults and other participants.

“We recommend health care providers, clinics and others working in health care settings be aware of these barriers, and urge more intervention research to explore means for removing them,” she and her co-authors wrote.

AASPIRE has a healthcare toolkit available online with primary care resources for providers, such as information on caring for patients on the autism spectrum and legal and ethical considerations. It also has resources for patients and their caregivers.

Gilmore and Nicolaidis reported no relevant financial conflicts of interest.

Autism Published December 9, 2021. Abstract

Karen Blum is a medical journalist in Maryland.

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