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Adults with autism reported poorer health care experiences
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Adults with autism had significantly worse health care experiences than adults without the disorder, according to recent study findings.
“Clinicians should be aware of potential barriers to care for their patients on the autism spectrum, and they should actively seek out potential strategies and accommodations that can help them provide more effective health care,” study researcher Christina Nicolaidis, MD, MPH, of Oregon Health and Science University, told Psychiatric Annals.
Christina Nicolaidis
Nicolaidis and colleagues surveyed 209 adults with autism and 228 non-autistic adults through a secure online registration system. The study was part of the Academic Autistic Spectrum Partnership in Research and Education, a community-based participatory research project involving health services, disability researchers, adults with autism and their family members, and disability service providers.
After adjusting for demographic characteristics, health insurance and health status, the researchers found that adults with autism reported lower satisfaction with health care provider communication (beta coefficient, –1.9; 95% CI, –2.9 to –0.9), general health care self-efficacy (beta coefficient, –11.9; 95% CI, –14 to –8.6), and chronic condition self-efficacy (beta coefficient, –4.5; 95% CI, –7.5 to –1.6). Adults with autism also reported greater unmet health care needs related to physical health (OR=1.9; 95% CI, 1.1-3.4), mental health (OR=2.2; 95% CI, 1.3-3.7) and prescription medication (OR=2.8; 95% CI, 2.2-7.5).
Adults with autism also had lower rates of tetanus vaccination (OR=0.5; 95% CI, 0.3-0.9) and Pap smears (OR=0.5; 95% CI, 0.2-0.9) and greater odds of using the ED (OR=2.1; 95% CI, 1.8-3.8).
Nicolaidis and colleagues said the results have important implications related to changes to diagnostic criteria in the upcoming DSM-5, which will collapse autism disorder, Asperger’s disorder, childhood disintegrative disorder and pervasive developmental disorder (not otherwise specified) into a single diagnosis of autism spectrum disorder.
“There is concern that those individuals will be deprived of services, self-understanding, and the right to accommodations, which would otherwise be mandated by the Americans with Disabilities Act,” the researchers wrote. “The existence of health care disparities in our sample, many of whom may be at risk for no longer meeting criteria, highlights these potential negative consequences, as not having a diagnosis may deprive patients and their providers of possible insights, strategies, and accommodations to try to improve health care experiences.”
Disclosure: The researchers report no relevant financial disclosures.
Perspective
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W. David Lohr, MD
This comparison of health care experiences in autistic and non-autistic adults by Nicolaidis et al suggests persons with autism report lower satisfaction with many facets of health care and receive lower rates of preventive health measures such as tetanus vaccine and Pap smears and are more likely to use the emergency room than non-autistic adults.
The design of the study is remarkable in that the community-based participatory research approach involved adults with autism as equal partners with academic members to design, implement, and participate in the study. Unlike much prior research, this study involves direct questioning of adults with autism not relying on caregiver reports. The study supports the use of the Internet as a form of augmented communication for adults with autism to reduce the disparities in satisfaction.
Despite similar rates of outpatient utilization, adults with autism were not satisfied with many aspects of their health care such as patient-provider communication, involvement and trust. Decreased self-efficacy in general health care and chronic disease management was also reported.
The authors are involved in preparing a tool kit for adults with autism and their primary care providers to remedy some of the findings. To better serve adults with autism, providers can be aware of the stimulation level of the office environment, and communicate in preferred modes such as typing and writing with visual scales to increase levels of follow-up. The study suggests individuals with autism have a role in increasing advocacy for services and accommodations.
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