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Saturday, September 24, 2016

Autistic People Face Barriers to Health Care

The Politics of Autism discusses health care, and explains that autism services can be complicated, creating difficulties for autistic people and their families. 

Dora Raymaker and colleagues have an article in Autism titled "Barriers to Healthcare: Instrument Development and Comparison between Autistic Adults and Adults with and without other Disabilities."  The abstract:
Our objective was to use a community-based participatory research approach to identify and compare barriers to healthcare experienced by autistic adults and adults with and without other disabilities. To do so, we developed a Long- and Short-Form instrument to assess barriers in clinical and research settings. Using the Barriers to Healthcare Checklist–Long Form, we surveyed 437 participants (209 autistic, 55 non-autistic with disabilities, and 173 non-autistic without disabilities). Autistic participants selected different and greater barriers to healthcare, particularly in areas related to emotional regulation, patient-provider communication, sensory sensitivity, and healthcare navigation. Top barriers were fear or anxiety (35% (n = 74)), not being able to process information fast enough to participate in real-time discussions about healthcare (32% (n = 67)), concern about cost (30% (n = 62)), facilities causing sensory issues 30% ((n = 62)), and difficulty communicating with providers (29% (n = 61)). The Long Form instrument exhibited good content and construct validity. The items combined to create the Short Form had predominantly high levels of correlation (range 0.2–0.8, p < 0.001) and showed responsiveness to change. We recommend healthcare providers, clinics, and others working in healthcare settings to be aware of these barriers, and urge more intervention research to explore means for removing them.
From the article:
In summary, autistic adults experience many similar barriers to healthcare access as people with other types of disabilities; however, they experience them at higher rates, and also experience unique autism-specific barriers that may be less likely to be addressed in modern healthcare systems.

Autistic adults in our study experienced many of the barriers identified in studies of adults with other disabilities, such as increased socio-economic barriers, difficulty getting sufficient support, and discrimination (World Health Organization (WHO), 2011; WHO, 2013). There were also similarities between the autistic and disability groups in barriers related to executive functioning. Difficulties with planning, sequencing, and understanding complex instructions are reported by many individuals on the spectrum (Landa and Goldberg, 2005) as well as by others (e.g. those with traumatic brain injury, intellectual disability, attention-deficit hyperactivity disorder). Interventions targeted toward improving healthcare access for people with disabilities more generally may also help autistic people, and existing literature and interventions related to these items may be transferrable to autistic patients.

Results also reflect the differences in barriers autistic individuals may experience due to characteristics associated with ASD; specifically, barriers related to emotional regulation, patient-provider communication, and sensory issues.
We recommend that clinicians, disability support professionals, and policy makers be aware of the barriers to healthcare access commonly faced by individuals on the autism spectrum, and work with individuals and systems to reduce those barriers.
  • Lagu T, Iezzoni LI and Lindenauer PK (2014) The axes of access–improving care for patients with disabilities. The New England Journal of Medicine 370: 1847–1851.
  • World Health Organization (WHO) (2011) World Report on Disability. Geneva, Switzerland:WHO.
  • World Health Organization (WHO) (2013) WHO | Disability and health. Available at: