Adults with autism report poorer health care

Adults with autism reported poorer access to health care, poorer communication with physicians and a higher prevalence of chronic conditions compared with adults without autism, according to findings published in Molecular Autism.

“This study should sound the alarm to health care professionals that their autistic patients are experiencing high rates of chronic conditions alongside difficulties with accessing health care,” Elizabeth Weir, PhD, a postdoctoral scientist at the Autism Research Centre (ARC) at the University of Cambridge, said in a press release. “Current health care systems are failing to meet very fundamental needs of autistic people.”

Weir and colleagues administered an anonymized, cross-sectional, self-report questionnaire to 1,285 adults with autism and 1,364 adults without autism in the U.K. between July 2019 and January 2021. The researchers assessed the prevalence of chronic conditions, quality of health care, differences in health inequality and effects of the COVID-19 pandemic. The mean age of adults with autism was 41.26 years and 63.5% were born female. The mean age of adults without autism was 38.4 years and 63.34% were born female. A majority of participants in both cohorts were white. Two adults with autism participated in more in-depth interviews with Weir and colleagues.

Adults with autism reported lower-quality health care on 50 out of 51 survey topics compared with adults without autism. Weir and colleagues also found that adults with autism reported “overwhelming” worse quality health care. They were 4.2 to 7.4 times more likely to report that a common health care scenario caused a shutdown or meltdown as well as worse communication with health care professionals. Specifically, only 55.65% (vs. 76.96%) of adults with autism reported that they feel they can bring up a health concern, even if their clinician does not ask about it, and only 52.45% (vs. 82.82%) of adults with autism reported that they know what is expected of them when they seek care from a clinician. Moreover, 38.23% (vs. 73.25%) of adults with autism reported that they were provided with appropriate support after receiving a medical diagnosis of any kind.

Adults with autism were 20% to 36% less likely than adults without autism to report being able to describe their symptoms and understand their clinician, according to the researchers. For every 10 adults without autism who reported being able to describe how their symptoms, pain or senses feel, only two to four adults with autism reported the same. Weir and colleagues reported that adults with autism were four times more likely to report sensory overload in a health care setting. These individuals also experienced poorer quality health care overall before and during the COVID-19 pandemic, according to self-reports. However, adults with and without autism similarly reported feeling like their health care professionals did not care about their well-being during the pandemic (about 19% each).

Meanwhile, individuals with autism had an increased risk for chronic conditions, particularly women with autism. Men with autism had an increased risk for mental health conditions and some developmental conditions compared with men without autism, according to the researchers.

“Health care systems must adapt to provide appropriate reasonable adjustments to autistic and all neurodiverse patients to ensure that they have equal access to high quality health care,” coauthor Carrie Allison, PhD, the director of the ARC, said in the release.

References:

Autistic individuals have poorer health and health care. https://www.newswise.com/articles/autistic-individuals-have-poorer-health-and-healthcare?sc=mwhr&xy=10046886/?ad2f=1&aid=771797. Published May 27, 2022. Accessed June 1, 2022.

Weir E, et al. Mol Autism. 2022;doi:10.1186/s13229-022-00501-w.