A Systematic Review of Strategies That Influence Physical Healthcare Access for Autistic Adults

Background: Some physical health conditions are reported more frequently by autistic people compared to the general population (e.g. cardiovascular disease). Furthermore, autistic people may be significantly less likely to access preventative screening services (e.g. prostate or cervical screening). Several recent studies reported an elevated risk of premature mortality for autistic people compared to the general population. Autistic people self-report significantly more unmet needs, and lower satisfaction with patient-provider communication. Qualitative work has indicated that inter-personal communication, sensory sensitivities, and self-efficacy may prevent autistic people from effectively engaging with healthcare services.

Objectives: To undertake a systematic review to investigate the barriers to physical healthcare access experienced by autistic people.

Methods: Inclusion criteria: Qualitative, quantitative, and mixed-methods studies published in English; includes a sample, or sub-sample of autistic adults (minimum age of 16 years); includes a qualitative or quantitative description of barriers that prevent effective access to physical healthcare or, factors facilitating healthcare. Databases (including CINAHL; Web of Science; MEDLINE; Embase; and PsychINFO) were searched using a list of terms including: barrier, facilitator, adjustment, access*, delivery of care, autis*. The Qualitative Assessment Tool for Studies with Diverse Designs (QATSDD) was used to evaluate the methodological quality of each study.

Results: A total of 5,177 records were included (including grey literature, n=44). After removing duplicates (n=2,139) a total of 3,308 articles were screened by title and abstract. After screening (n=3,006 removed) 32 articles were assessed for eligibility by full-text read through. Six articles were retained for inclusion in the qualitative synthesis. The QATSDD was completed by two independent raters (Two-way random Intraclass Correlation Coefficient=0.97, p<0.001). Included papers varied in methodology: two quantitative papers (a longitudinal study and measure validation study); two qualitative studies about healthcare experiences; and two mixed methodology studies. Both quantitative and qualitative data identified similar barriers to physical healthcare access. These barriers included: difficulties knowing where to find help; anxiety makes accessing healthcare challenging; sensory sensitivities; negative experiences with health professionals; and problems with patient-provider communication. One study testing a toolkit for improving communication between patient and provider did show a significant reduction in barriers to healthcare access, suggesting improving healthcare access for autistic adults is possible.

Conclusions: Six studies highlighted that autistic people face diverse barriers to accessing healthcare. As these barriers are multi-faceted, helping autistic people access healthcare more effectively is likely to require a nuanced, personalised approach that meets an individual’s unique needs. Given that barriers to healthcare can be reduced our research team will build on these findings with projects that evaluate ways of improving access to healthcare for older autistic adults and, identifying treatable health conditions through specific health checks for autistic people and developing better informed treatment plans.