Identifying the Barriers to Early Diagnosis and Treatment in Underserved Individuals with Autism Spectrum Disorders (ASD) and Their Families: A Qualitative Study
Abstract
Clinical accounts indicate that disparities exist among families of children with Autism Spectrum Disorders (ASD), and that these disparities impede timely diagnosis and intervention. Furthermore, families living in rural areas are more likely to have reduced access to proper care and use alternative, unproven, and potentially harmful treatments. The purpose of this project was to begin addressing these needs by engaging providers and families of children with ASD living in rural and typically underserved areas. The investigators established a Community Advisory Board (CAB) of ASD professionals (e.g., community-based healthcare and service providers, director of a center for disabilities, psychologist, autism researcher, and special education professional). Next, they conducted four focus groups comprised of a total of 35 major stakeholders (e.g., individuals with ASD, parents of individuals with ASD, community-based healthcare and service providers, school teachers) to determine potential resources, barriers to early diagnosis/treatment, and alternative treatment use in children with ASD. Focus group sessions were audio-recorded, transcribed verbatim, and analyzed by three trained independent coders. Community participants identified several barriers to early diagnosis and intervention, as well as a variety of alternative treatments used in children with ASD. Thematic analysis of focus group transcripts showed several overarching themes regarding barriers to early diagnosis and treatment. Findings from this study have implications for practice and future research.
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Families without access to care in their community are less likely to seek care due to additional cost, time commitment, and disruption to daily obligations associated with long-distance travel.
“Families that do not have access to care in their community are less likely to seek care due to the additional cost, time commitment and disruption to daily obligations (e.g., work) associated with longdistance travel.”
From Tackling healthcare access barriers for individuals with autism from diagnosis to adulthood (2022) · cites this paper as [14]
Many individuals with ASD, their families, and physicians have reported that physicians can lack the specialized knowledge required to screen, diagnose, and refer individuals with ASD.
“Unfortunately, many individuals with ASD, their families, and even physicians have reported that physicians can lack specialized knowledge required to screen, diagnose, and refer individuals with ASD.”
From Tackling healthcare access barriers for individuals with autism from diagnosis to adulthood (2022) · cites this paper as [14]
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Self-citationSocial interactions of children with autism in father-child and mother-child play sessions.
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Tackling healthcare access barriers for individuals with autism from diagnosis to adulthood
Malik-Soni, N., Shaker, A., Luck, H., Mullin, A. E., Wiley, R. E., Lewis, M. E. S., Fuentes, J., & Frazier, T. W. (2022) · Pediatric Research · doi:10.1038/s41390-021-01465-y · Cited by 309 · see citing works
Rural Trends in Diagnosis and Services for Autism Spectrum Disorder
Antezana, L., Scarpa, A., Valdespino, A., Albright, J., & Richey, J. A. (2017) · Frontiers in Psychology · doi:10.3389/fpsyg.2017.00590 · Cited by 218 · see citing works
Karpur, A., Lello, A., Frazier, T., Dixon, P. J., & Shih, A. J. (2019) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-018-3862-9 · Cited by 121 · see citing works
- Authors
- Elder, J. H., Brasher, S., & Alexander, B.
- Affiliations
- University of Florida (US)
- Corresponding author
- Elder, Jennifer Harrison
- Venue
- Issues in Mental Health Nursing
- Publisher
- Informa UK Limited
- Published
- 2016-04-12
- Volume
- 37
- Issue
- 6
- Pages
- 412-420
- ISSN
- 0161-2840 (ISSN-L)
- 1096-4673
- OpenAlex
- W2337350690
- Cited by
- 117
- References
- 9
- Citations by year
- 2026: 7 · 2025: 19 · 2024: 16 · 2023: 14 · 2022: 19 · 2021: 14 · 2020: 9 · 2019: 5 · 2018: 8 · 2017: 6
- FWCI
- 4.03
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Issues in Mental Health Nursing (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
- Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
- Health Sciences › Medicine › Psychiatry and Mental health › Child Nutrition and Feeding Issues
- Keywords
- autism spectrum disorder, early diagnosis, early intervention, barriers to care, underserved populations, rural households, health disparities, alternative treatment, complementary therapy, community advisory board, stakeholder perspectives, parents of autistic children, health care access
- MeSH terms
- Autism Spectrum Disorder, Adult, Aged, Child, Female, Health Services Accessibility, Humans, Male, Medically Underserved Area, Middle Aged, Parents, Rural Population, Focus Groups, Qualitative Research, Early Diagnosis, Young Adult
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