Abstract
Most individuals with autism spectrum disorder (ASD)—a complex, life-long developmental disorder—do not have access to the care required to address their diverse health needs. Here, we review: (1) common barriers to healthcare access (shortage/cost of services; physician awareness; stigma); (2) barriers encountered primarily during childhood (limited screening/diagnosis; unclear referral pathways), transition to adulthood (insufficient healthcare transition services; suboptimal physician awareness of healthcare needs) and adulthood (shortage of services/limited insurance; communication difficulties with physicians; limited awareness of healthcare needs of aging adults); and (3) advances in research/program development for better healthcare access. A robust understanding of barriers to accessing healthcare across the lifespan of autistic individuals is critical to ensuring the best use of healthcare resources to improve social, physical, and mental health outcomes. Stakeholders must strengthen healthcare service provision by coming together to: better understand healthcare needs of underserved populations; strengthen medical training on care of autistic individuals; increase public awareness of ASD; promote research into/uptake of tools for ASD screening, diagnosis, and treatment; understand specific healthcare needs of autistic individuals in lower resource countries; and conduct longitudinal studies to understand the lifetime health, social, and economic impacts of ASD and enable the evaluation of novel approaches to increasing healthcare access.
Impact
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Despite the growing body of evidence, our understanding of barriers to healthcare encountered by individuals with ASD remains limited, particularly beyond childhood and in lower resource countries.
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We describe current and emerging barriers to healthcare access encountered by individuals with ASD across the lifespan.
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We recommend that stakeholders develop evidence-informed policies, programs, and technologies that address barriers to healthcare access for individuals with ASD and consider broad, equitable implementation to maximize impact.
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Acknowledgements
This work was partially sponsored by F. Hoffman-La Roche Ltd. Shift Health consults with organizations across the health and life sciences sector, including F. Hoffman-La Roche Ltd. Authors from Shift Health (R.E.W., A.E.M., N.M.-S., A.S., H.L.) were employed under contract with Hoffman-La Roche Ltd for the purpose of this work. Authors not employed by Shift Health (S.L., J.F., T.W.F.) did not receive support or remuneration related to this work. S.L. is supported by an IGAP salary award from the BC Children’s Hospital Research Institute, and is an invited contributor on behalf of Autism Canada. The sponsor (F. Hoffman-La Roche Ltd) did not have a role in the: design and conduct of the literature review; synthesis and analysis of evidence; preparation, review, or approval of the manuscript; or decision to submit the manuscript for publication.
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N.M.-S., H.L., A.E.M., and A.S. conceptualized and designed the study, collected the data (e.g., papers reviewed), drafted the initial manuscript, and reviewed and revised the manuscript. R.E.W., S.L., J.F., and T.W.F. conceptualized and designed the study, reviewed. and revised the manuscript. All authors approved the final manuscript as submitted for publication.
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T.W.F. has received funding or research support from, acted as a consultant to, received travel support from, and/or received a speaker’s honorarium from Quadrant Biosciences, Impel NeuroPharma, F. Hoffmann-La Roche AG Pharmaceuticals, the Cole Family Research Fund, Simons Foundation, Ingalls Foundation, Forest Laboratories, Ecoeos, IntegraGen, Kugona LLC, Shire Development, Bristol-Myers Squibb, Roche Pharma, National Institutes of Health, and the Brain and Behavior Research Foundation and has an investor stake in Autism EYES LLC. J.F. has received research support from Policlinica Gipuzkoa Foundation (PGF), Servier, and AIMS-2 Trials/Project ID 777394. He has received partial support for professional meetings attendance from PGF, ESCAP & AACAP.
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Malik-Soni, N., Shaker, A., Luck, H. et al. Tackling healthcare access barriers for individuals with autism from diagnosis to adulthood. Pediatr Res 91, 1028–1035 (2022). https://doi.org/10.1038/s41390-021-01465-y
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DOI: https://doi.org/10.1038/s41390-021-01465-y
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