“You think it’s hard now … It gets much harder for our children”: Youth with autism and their caregiver’s perspectives of health care transition services
Abstract
Adolescents with Autism Spectrum Disorder diagnosis often have complex comorbid physical and mental health conditions. These youth rely heavily on their medical providers and struggle through the often rocky transition out of pediatric care into adulthood and adult-centered care. This study is among the first to qualitatively examine the health care transition experiences of youth with Autism Spectrum Disorder and their caregivers. We conducted four focus groups with youth with Autism Spectrum Disorder (n = 13) and their caregivers (n = 19) and used thematic analysis strategies to identify key themes. Parents’ discussions emphasized (a) loss of relationship with provider and lack of support transitioning from pediatric to adult care, (b) providers’ lack of knowledge about Autism Spectrum Disorder, and (c) concerns about losing guardianship. Youth emphasized their confusion and anxiety around (a) medical providers’ role, especially in the transition to adulthood; and (b) managing their medical lives independently. Our findings are important because they not only improve our understanding of health care transition needs among youth with Autism Spectrum Disorder and their caregivers but demonstrate a sound methodological procedure to facilitate input from youth with Autism Spectrum Disorder.
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Multiple studies found that there is a lack of adult care physicians who have specialized understanding of the medical, behavioral, and social needs of individuals with ASD during transition.
“Further, multiple studies found that there is a lack of adult care physicians who have specialized understanding of the medical, behavioral, and social needs of individuals with ASD during transition.”
From Tackling healthcare access barriers for individuals with autism from diagnosis to adulthood (2022) · cites this paper as [77]
Cites
Lincoln, Y. S., Guba, E. G., & Pilotta, J. J. (1985) · International Journal of Intercultural Relations · doi:10.1016/0147-1767(85)90062-8 · Cited by 45,787 · see citing works
(2006) · Cited by 18,730 · see citing works
Constructing grounded theory. A practical guide through qualitative analysis
Brink, E., Dellve, L., Hallberg, U. E., Abrahamsson, K. H., Klingberg, G., & Wentz, K. (2006) · International Journal of Qualitative Studies on Health and Well-Being · doi:10.3402/qhw.v1i3.4932 · Cited by 6,909 · see citing works
Management of Children With Autism Spectrum Disorders
Myers, S. M., Johnson, C. P., & the Council on Children With Disabilities (2007) · Pediatrics · doi:10.1542/peds.2007-2362 · Cited by 1,125 · see citing works
Supporting the health care transition from adolescence to adulthood in the medical home
Cooley, W. C., Sagerman, P. J., & American Academy of Pediatrics, A. A. O. F. P. (2011) · PEDIATRICS · doi:10.1542/peds.2011-0969 · Cited by 1,119 · see citing works
Epidemiology of Autism Spectrum Disorders in Adults in the Community in England
Brugha, T. S., McManus, S., Bankart, J., Scott, F., Purdon, S., Smith, J., Bebbington, P., Jenkins, R., & Meltzer, H. (2011) · Archives of General Psychiatry · doi:10.1001/archgenpsychiatry.2011.38 · Cited by 903 · see citing works
Trajectory of development in adolescents and adults with autism
Seltzer, M. M., Shattuck, P. T., Abbeduto, L., & Greenberg, J. S. (2004) · Mental Retardation and Developmental Disabilities Research Reviews · doi:10.1002/mrdd.20038 · Cited by 589 · see citing works
Journal of Applied Research in Intellectual Disabilities
Ager, A., & Hatton, C. (2010) · Journal of Applied Research in Intellectual Disabilities · doi:10.1111/(issn)1468-3148 · Cited by 582 · see citing works
Health care transition: youth, family, and provider perspectives
Reiss, J. G., Gibson, R. W., & Walker, L. R. (2005) · Pediatrics · doi:10.1542/peds.2004-1321 · Cited by 568 · see citing works
Adults with Autism Spectrum Disorders
Howlin, P., & Moss, P. (2012) · The Canadian Journal of Psychiatry · doi:10.1177/070674371205700502 · Cited by 559 · cited 1× · see citing works
“Much has been researched and written about children with ASD, but we know very little about their health as they age into adulthood (Howlin and Moss, 2012; Levy and Perry, 2011).”
BackgroundTransition From School to Adulthood for Youth With Autism Spectrum Disorders
Hendricks, D. R., & Wehman, P. (2009) · Focus on Autism and Other Developmental Disabilities · doi:10.1177/1088357608329827 · Cited by 461 · see citing works
Outcomes in adolescents and adults with autism: A review of the literature
Levy, A. K., & Perry, A. (2011) · Research in Autism · doi:10.1016/j.rasd.2011.01.023 · Cited by 448 · see citing works
Post–High School Service Use Among Young Adults With an Autism Spectrum Disorder
Shattuck, P. T., Wagner, M., Narendorf, S., Sterzing, P., & Hensley, M. (2011) · Archives of Pediatrics & Adolescent Medicine · doi:10.1001/archpediatrics.2010.279 · Cited by 337 · see citing works
Transition From Pediatric to Adult Care: Internists' Perspectives
Peter, N. G., Forke, C. M., Ginsburg, K. R., & Schwarz, D. F. (2009) · PEDIATRICS · doi:10.1542/peds.2008-0740 · Cited by 270 · see citing works
Binks, J. A., Barden, W. S., Burke, T. A., & Young, N. L. (2007) · Archives of Physical Medicine and Rehabilitation · doi:10.1016/j.apmr.2007.04.018 · Cited by 249 · see citing works
McDonagh, J. E. R., Southwood, T. R. E., Shaw, K. L., & on behalf of the British Society of Paediatric and Adolescent Rheumatology (2006) · Lara D. Veeken · doi:10.1093/rheumatology/kel198 · Cited by 237 · see citing works
Muskat, B., Burnham Riosa, P., Nicholas, D. B., Roberts, W., Stoddart, K. P., & Zwaigenbaum, L. (2015) · Autism · doi:10.1177/1362361314531341 · Cited by 184 · see citing works
Medical homes for children with autism: a physician survey
Golnik, A., Ireland, M., & Borowsky, I. W. (2009) · Pediatrics · doi:10.1542/peds.2008-1321 · Cited by 176 · see citing works
Access to Care for Youth with Special Health Care Needs in the Transition to Adulthood
Lotstein, D. S., Inkelas, M., Hays, R. D., Halfon, N., & Brook, R. H. (2008) · Journal of Adolescent Health · doi:10.1016/j.jadohealth.2007.12.013 · Cited by 121 · see citing works
Disparities in Transition Planning for Youth With Autism Spectrum Disorder
Cheak-Zamora, N. C., Yang, X., Farmer, J. E., & Clark, M. (2013) · Pediatrics · doi:10.1542/peds.2012-1572 · Cited by 120 · see citing works
Self-citationStewart, D. (2009) · Developmental Medicine & Child Neurology · doi:10.1111/j.1469-8749.2009.03419.x · Cited by 100 · see citing works
Taylor, J. L., & Seltzer, M. M. (2010) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-010-1166-9 · Cited by 80 · see citing works
Focus groups with people with learning disabilities
Kaehne, A., & O'Connell, C. (2010) · Journal of Intellectual Disabilities · doi:10.1177/1744629510381939 · Cited by 76 · see citing works
Kuhlthau, K. A., Warfield, M. E., Hurson, J., Delahaye, J., & Crossman, M. K. (2015) · Autism · doi:10.1177/1362361313518125 · Cited by 64 · see citing works
Schieve, L. A., Rice, C., Yeargin-Allsopp, M., Boyle, C. A., Kogan, M. D., Drews, C., & Devine, O. (2012) · Maternal and Child Health Journal · doi:10.1007/s10995-012-1004-0 · Cited by 62 · see citing works
Healthcare for children with autism: the Autism Treatment Network
Coury, D., Jones, N. E., Klatka, K., Winklosky, B., & Perrin, J. (2009) · Current opinion in pediatrics · doi:10.1097/mop.0b013e328331eaaa · Cited by 56 · see citing works
Interventions for Adolescents and Young Adults with Autism Spectrum Disorders
(2013) · PsycEXTRA Dataset · doi:10.1037/e553942013-001 · Cited by 55 · see citing works
Rehm, R. S., Fuentes‐Afflick, E., Fisher, L. T., et al. (2012) · Advances in Nursing Science · doi:10.1097/ans.0b013e3182626180 · Cited by 51 · see citing works
Health care transition services for youth with autism spectrum disorders.
Cheak‐Zamora, N., Farmer, J. E., Mayfield, W. A., Clark, M. J., Marvin, A. R., Law, K., & Law, P. A. (2014) · Rehabilitation Psychology · doi:10.1037/a0036725 · Cited by 46 · see citing works
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Sorted by citations
‘Something needs to change’: Mental health experiences of young autistic adults in England
Crane, L., Adams, F., Harper, G., Welch, J., & Pellicano, E. (2019) · Autism · doi:10.1177/1362361318757048 · Cited by 397 · see citing works
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
Weiss, J. A., Isaacs, B., Diepstra, H., Wilton, A. S., Brown, H. K., McGarry, C., & Lunsky, Y. (2018) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-017-3292-0 · Cited by 159 · see citing works
Brede, J., Cage, E., Trott, J., Palmer, L., Smith, A., Serpell, L., Mandy, W., & Russell, A. (2022) · Clinical Psychology Review · doi:10.1016/j.cpr.2022.102131 · Cited by 139 · see citing works
Mazurek, M. O., Stobbe, G., Loftin, R., Malow, B. A., Agrawal, M. M., Tapia, M., Hess, A., Farmer, J., Cheak-Zamora, N., Kuhlthau, K., et al. (2020) · Autism · doi:10.1177/1362361319879616 · Cited by 63 · see citing works
Self-citationAutism Spectrum Disorder and Transition-Aged Youth
Bennett, A. E., Miller, J. S., Stollon, N., Prasad, R., & Blum, N. J. (2018) · Current Psychiatry Reports · doi:10.1007/s11920-018-0967-y · Cited by 60 · see citing works
The Medical Home and Health Care Transition for Youth With Autism
Rast, J. E., Shattuck, P. T., Roux, A. M., Anderson, K. A., & Kuo, A. (2018) · Pediatrics · doi:10.1542/peds.2016-4300j · Cited by 35 · see citing works
- Authors
- Cheak-Zamora, N. C., & Teti, M.
- Affiliations
- University of Missouri, USA
- University of Missouri (US)
- ORCID
- Teti, Michelle
- Venue
- Autism
- Publisher
- SAGE Publications
- Published
- 2014-12-11
- Volume
- 19
- Issue
- 8
- Pages
- 992-1001
- ISSN
- 1362-3613 (ISSN-L)
- 1461-7005
- OpenAlex
- W2102072931
- Cited by
- 109
- References
- 29
- Citations by year
- 2026: 12 · 2025: 9 · 2024: 9 · 2023: 9 · 2022: 13 · 2021: 9 · 2020: 15 · 2019: 10 · 2018: 8 · 2017: 11 · 2016: 3 · 2015: 1
- FWCI
- 11.17
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Autism (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Health Sciences › Health Professions › Speech and Hearing › Adolescent and Pediatric Healthcare
- Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
- Health Sciences › Health Professions › General Health Professions › Child and Adolescent Health
- Keywords
- autism spectrum disorder, care transitions, transition to adult care, adolescents, caregivers, youth perspectives, provider-patient relationship, medical independence
- MeSH terms
- Autism Spectrum Disorder, Adolescent, Adult, Autistic Disorder, Female, Humans, Male, Parents, Caregivers, Patient Satisfaction, Focus Groups, Young Adult, Independent Living, Transition to Adult Care
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