Utilization of health services among adults with autism spectrum disorders: Stakeholders' experiences.
Adults with autism still hit wall after wall in everyday healthcare—your behavior plan must include system-level advocacy.
01Research in Context
What this study did
Ghanouni et al. (2021) talked with adults with autism, parents, and healthcare workers. They asked about real-life visits to doctors, dentists, and clinics.
The team used long interviews, not check-box surveys. People told stories about what helped or blocked good care.
What they found
Every group said the same thing: getting care is hard and the care is often poor. Problems start with making an appointment and end with follow-up.
Barriers were bigger than any one doctor. They sat in the system—insurance rules, clinic design, and staff who had no autism training.
How this fits with other research
The finding lines up with Bruder et al. (2012). That earlier survey showed most primary-care doctors felt under-trained for autistic adults. Parisa adds patient voices that prove the doctors were right to feel unprepared.
Morris et al. (2019) scoping review of 27 studies also saw providers struggle with role overload and scant autism tools. Parisa’s interviews give the lived details behind those provider stats.
Pimentel Júnior et al. (2024) zoomed in on dental care and listed the same gaps: few trained clinicians, hard-to-access clinics, and no clear protocols. Parisa shows these dental headaches mirror the whole health system.
Why it matters
If you serve teens or adults, expect health-care hurdles to outlast your behavior plan. Coach clients to ask for quiet waiting areas, written instructions, and longer visit slots. Build a short hand-out that explains autism and needed supports—give it to nurses, front-desk staff, and doctors. Your advocacy can turn one more clinic into an autism-informed site.
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02At a glance
03Original abstract
BACKGROUND: Autism spectrum disorder (ASD) is a lifelong disorder, beginning in early childhood, which often accompanies with several healthcare challenges. There is a need for consistent and continued healthcare services throughout the life of an individual with ASD. The majority of previous studies have examined healthcare services in children with ASD and there is limited evidence about healthcare needs of adults with ASD. OBJECTIVE: The aim of this project was to capture the experiences of stakeholders including adults with ASD in receiving healthcare services. METHOD: We interviewed 22 stakeholders, including adults with ASD (n = 13), parents of adults with ASD (n = 5), and service providers (n = 4). Open-ended questions were used to explore their experiences with the healthcare system. We analysed the data thematically to develop the overarching themes. RESULTS: Three themes emerged from interviews including a) availability and accessibility of healthcare services, b) provision of quality healthcare and service delivery, and c) striving for better health outcomes. CONCLUSION: This study found that many adults with ASD can experience a continued lack of access to services and the care they receive is often of limited quality. The unmet healthcare needs lead stakeholders to feel stress, frustration, exhaustion, and possible burnout. The detrimental cost of limited services not only impacts adults with ASD but also their caregivers.
Research in developmental disabilities, 2021 · doi:10.1016/j.ridd.2021.104120