Healthcare service use patterns among autistic adults: A systematic review with narrative synthesis

Abstract

Autistic adults often experience barriers to healthcare that can cause their healthcare service use to be unique from other populations. We conducted a systematic review to gather the most recent evidence about how often autistic adults use five important healthcare services (the emergency department, hospitalization, outpatient mental health, preventive services, and primary care) compared to populations of non-autistic adults. We searched six electronic research databases for articles. Our search strategy identified N = 2964 unique articles. Ultimately, we included N = 16 articles in our review. Most included studies (N = 13) were high-quality level 3a studies that compared autistic adults’ service use to a non-autistic population comparison group (N = 11), and examined emergency department use (N = 12). Autistic adults most often had equal or higher use of services than population comparison groups across all healthcare services we examined. Although autistic adults had greater use of primary care and preventive services than comparison groups, frequent emergency department visits and hospitalizations may reflect that these services are not adequately meeting autistic adults’ needs. Future research should identify targets for improving autistic adults’ access to and use of primary care and preventive services, which may ultimately reduce frequent use of the emergency department and hospitalizations. Lay abstract Autistic adults often have complex healthcare needs due to factors like having other health conditions, sensory sensitivities, and limited access to healthcare providers who are trained to provide care for them. All these factors may influence the healthcare services that autistic adults use. In this review, we searched six electronic research databases to gather the most recent evidence about how often autistic adults use five important healthcare services (the emergency department, hospitalization, outpatient mental health, preventive services, and primary care) compared to populations of non-autistic adults. A total of 16 articles were ultimately included in this review. Most articles found that autistic adults had equal or higher use of healthcare services than non-autistic adults. Autistic adults frequently used the emergency department and hospital. This may indicate that routine outpatient care in the community is not meeting their needs. Our findings show the importance of improving care at this level for autistic adults to reduce overuse of the emergency department (in this article referred to as ED) and hospital.

Five Ways Providers Can Improve Mental Healthcare for Autistic Adults: A Review of Mental Healthcare Use, Barriers to Care, and Evidence-Based Recommendations

“…Overall, autistic adults also tend to use mental healthcare more than the general population and other diagnostic groups [ 13 ]. In a Canadian study, autistic adults were twice as likely as adults with other developmental disabilities, and almost 12 times as likely as adults without developmental disabilities, to see a psychiatrist in the past year [ 25 ].…”

“…Autistic adults’ access to high-quality mental healthcare is therefore of paramount importance, especially when considering they are disproportionately more likely to have co-occurring mental health conditions than the general population [ 4 •, 11 ••, 12 ]. Consistent evidence indicates that autistic adults who use mental healthcare services do so more frequently than non-autistic adults [ 13 ], but they continue to experience unmet mental healthcare needs [ 14 ••, 15 – 17 ]. As such, the quality of these services for autistic adults may be poor [ 14 ••, 18 ].…”

Recommendations to improve primary healthcare for people with autism: a Delphi-study

“…Since providing (access to) appropriate healthcare is a main task of general practitioners (GPs), reducing barriers in primary healthcare for autistic people is key (Mazurek et al, 2020). Despite this need to improve healthcare for the autistic population, there is a lack of recommendations that are useful for improvement of primary healthcare, and are also based on both the needs of primary healthcare providers (HCPs) and autistic people (Gilmore et al, 2022;Walsh et al, 2021).…”

Prevalence of Autism Among Medicaid-Enrolled Adults

“…3 The need for autism services, including health care services, does not end at childhood. 4 As the prevalence of children identified as autistic has increased, there is a concomitant increase of autistic adults in the Medicaid system. 5,6 Medicaid is a crucial insurance provider for autistic adults.…”