Managing the health care needs of adolescents with autism spectrum disorder: The parents’ experience.
Open accessAbstract
Parents of adolescents with autism spectrum disorder (ASD) experience the challenges of navigating the health care system, locating information about ASD, lacking an understanding of prescribed medications, and experiencing minimal social support from health care providers. The purpose of this phenomenological study was to describe the experiences of parents who manage the health needs of an adolescent with ASD. Qualitative interviews were conducted at a university setting with 12 parents of 10 adolescents with ASD residing in Central Virginia. Data were analyzed using Moustakas' method in which the phenomenologist asks the following questions: What are the individual's experiences and in what context did they experience them? This study maximized credibility using 3 strategies: prolonged engagement, peer debriefing, and member checking. "Parents needing assistance" emerged as the essence of the parents' experiences. Four themes representing the essential challenging elements of the parents' experiences included concern with medications, frustrations with health care services, recognizing secondary health issues, and the need for resources and services. Findings of the current study revealed key factors to be considered in the development and delivery of health care for adolescents with ASD. These include creating and planning interventions for parents, sharing information about resources and services, and collaborating with others in the health care field. Additional researc…
Integrity signals
Registry
Cites
Statistics
Claims the paper makes
Claims other papers make about this one
Each is checked against this paper’s own text: does it say what the citing paper says it does?
In one study, parents reported frustration related to the inadequacy of care provided and not being listened to.
“In one study, parents reported frustration related to the inadequacy of care provided and not being listened to (Strunk et al., 2014).”
From A meta‐synthesis of how parents of children with autism describe their experience of accessing and using routine healthcare services for their children (2021) · cites this paper as Strunk et al., 2014
The need to recognise and explore the issues holistically in relation to each individual child was expressed.
“In addition, the need to recognise and explore the issues holistically in relation to each individual child was expressed in the following quotes:”
From A meta‐synthesis of how parents of children with autism describe their experience of accessing and using routine healthcare services for their children (2021) · cites this paper as Strunk et al., 2014
Cites
(1998) · Cited by 18,576 · see citing works
Phenomenological research methods
Moustakas, C. (1994) · doi:10.4135/9781412995658 · Cited by 13,919 · see citing works
Sample size in qualitative research
Sandelowski, M. (1995) · Research in Nursing & Health · doi:10.1002/nur.4770180211 · Cited by 4,372 · see citing works
Anxiety Disorders in Children and Adolescents with Autistic Spectrum Disorders: A Meta-Analysis
van Steensel, F. J. A., Bögels, S. M., & Perrin, S. (2011) · Clinical Child and Family Psychology Review · doi:10.1007/s10567-011-0097-0 · Cited by 1,463 · see citing works
Davis, N. O., & Carter, A. S. (2008) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-007-0512-z · Cited by 1,212 · see citing works
Estes, A., Munson, J., Dawson, G., Koehler, E., Zhou, X.-H., & Abbott, R. (2009) · Autism · doi:10.1177/1362361309105658 · Cited by 865 · cited 1× · see citing works
“…ranking lowest in impact (3) Child syndrome group had a negative impact above and beyond the contributions of behavior problems and cognitive level Estes et al (2009), Autism United States Level of Evidence: IV Emerging Theme: Stress N=74 mothers and their children (those with ASD and those who…”
BackgroundKogan, M. D., Strickland, B. B., Blumberg, S. J., Singh, G. K., Perrin, J. M., & van Dyck, P. C. (2008) · PEDIATRICS · doi:10.1542/peds.2008-1057 · Cited by 625 · see citing works
Bullying Experiences Among Children and Youth with Autism Spectrum Disorders
Cappadocia, M. C., Weiss, J. A., & Pepler, D. J. (2011) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-011-1241-x · Cited by 555 · see citing works
Living in a World of Our Own: The Experience of Parents Who Have a Child With Autism
Woodgate, R. L., Ateah, C. A., & Secco, L. M. (2008) · Qualitative Health Research · doi:10.1177/1049732308320112 · Cited by 451 · see citing works
Rao, P. A., & Beidel, D. (2009) · Behavior Modification · doi:10.1177/0145445509336427 · Cited by 427 · see citing works
Myers, B. J., Mackintosh, V. H., & Goin‐Kochel, R. P. (2009) · Research in Autism · doi:10.1016/j.rasd.2009.01.004 · Cited by 420 · see citing works
Self-citationTrends in Adolescent and Young Adult Health in the United States
Mulye, T. P., Park, M. J., Nelson, C. D., Adams, S. H., Irwin, C. E., & Brindis, C. D. (2009) · Journal of Adolescent Health · doi:10.1016/j.jadohealth.2009.03.013 · Cited by 392 · see citing works
Access to Care for Autism-Related Services
Thomas, K. C., Ellis, A. R., McLaurin, C., Daniels, J., & Morrissey, J. P. (2007) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-006-0323-7 · Cited by 369 · see citing works
Benson, P. R., & Karlof, K. L. (2008) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-008-0632-0 · Cited by 300 · see citing works
Parenting Children With Autism Spectrum Disorders
Brobst, J. B., Clopton, J. R., & Hendrick, S. S. (2008) · Focus on Autism and Other Developmental Disabilities · doi:10.1177/1088357608323699 · Cited by 286 · see citing works
Family Functioning and Coping Behaviors in Parents of Children with Autism
Altiere, M. J., & von Kluge, S. (2008) · Journal of Child and Family Studies · doi:10.1007/s10826-008-9209-y · Cited by 260 · see citing works
The Medical Home for Children with Autism Spectrum Disorders: Parent and Pediatrician Perspectives
Carbone, P. S., Behl, D., Azor, V., & Murphy, N. (2009) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-009-0874-5 · Cited by 255 · see citing works
Parenting Stress in Mothers of Children With Autism Spectrum Disorders
Phetrasuwan, S., & Shandor Miles, M. (2009) · Journal for Specialists in Pediatric Nursing · doi:10.1111/j.1744-6155.2009.00188.x · Cited by 209 · see citing works
Positive Experiences of Mothers and Fathers of Children with Autism
Kayfitz, A. D., Gragg, M. N., & Orr, R. R. (2010) · Journal of Applied Research in Intellectual Disabilities · doi:10.1111/j.1468-3148.2009.00539.x · Cited by 187 · see citing works
Liptak, G. S., Orlando, M., Yingling, J. T., Theurer-Kaufman, K. L., Malay, D. P., Tompkins, L. A., & Flynn, J. R. (2006) · Journal of Pediatric Health Care · doi:10.1016/j.pedhc.2005.12.008 · Cited by 180 · see citing works
Storch, E. A., Sulkowski, M. L., Nadeau, J., Lewin, A. B., Arnold, E. B., Mutch, P. J., Jones, A. M., & Murphy, T. K. (2013) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-013-1795-x · Cited by 157 · see citing works
Enrichment, stress, and growth from parenting an individual with an autism spectrum disorder
Phelps, K. W., McCammon, S. L., Wuensch, K. L., & Golden, J. A. (2009) · Journal of Intellectual & Developmental Disability · doi:10.1080/13668250902845236 · Cited by 154 · see citing works
Lee, G. K., Lopata, C. J., Volker, M. A., Thomeer, M. L., Nida, R. E., Toomey, J. A., Chow, S. Y., & Smerbeck, A. M. (2009) · Focus on Autism and Other Developmental Disabilities · doi:10.1177/1088357609347371 · Cited by 148 · see citing works
Reaction to diagnosis and parenting styles among mothers of young children with ASDs
Wachtel, K., & Carter, A. S. (2008) · Autism · doi:10.1177/1362361308094505 · Cited by 139 · see citing works
Brachlow, A. E., Ness, K. K., McPheeters, M. L., & Gurney, J. G. (2007) · Archives of Pediatrics and Adolescent Medicine · doi:10.1001/archpedi.161.4.399 · Cited by 120 · see citing works
The link between emotion regulation, social functioning, and depression in boys with ASD
Pouw, L. B. C., Rieffe, C. J., Stockmann, L., & Gadow, K. D. (2013) · Research in Autism · doi:10.1016/j.rasd.2013.01.002 · Cited by 112 · see citing works
Achieving Family and Provider Partnerships for Children With Special Health Care Needs
Denboba, D., McPherson, M. G., Kenney, M. K., Strickland, B., & Newacheck, P. W. (2006) · Pediatrics · doi:10.1542/peds.2006-0383 · Cited by 110 · see citing works
Children With Autism: Sleep Problems and Mothers' Stress
Hoffman, C. D., Sweeney, D. P., Lopez-Wagner, M. C., Hodge, D., Nam, C. Y., & Botts, B. H. (2008) · Focus on Autism and Other Developmental Disabilities · doi:10.1177/1088357608316271 · Cited by 108 · see citing works
Parenting a Child with Autism: Contextual Factors Associated with Enhanced Daily Parental Mood
Pottie, C. G., Cohen, J., & Ingram, K. M. (2008) · Journal of Pediatric Psychology · doi:10.1093/jpepsy/jsn094 · Cited by 98 · see citing works
Raising an Autistic Child: Perspectives From Turkish Mothers
Bilgin, H., & Küçük, L. (2010) · Journal of Child and Adolescent Psychiatric Nursing · doi:10.1111/j.1744-6171.2010.00228.x · Cited by 89 · see citing works
Parent-Provider-Community Partnerships: Optimizing Outcomes for Children With Disabilities
Murphy, N., & Carbone, P. S. (2011) · PEDIATRICS · doi:10.1542/peds.2011-1467 · Cited by 74 · see citing works
Autism-Specific Primary Care Medical Home Intervention
Golnik, A. E., Scal, P. B., Wey, A. R., & Gaillard, P. (2011) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-011-1351-5 · Cited by 65 · see citing works
Autism and Pediatric Practice: Toward a Medical Home
Hyman, S. L., & Johnson, J. K. (2012) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-012-1474-3 · Cited by 61 · see citing works
South, M., Dana, J., White, S. E., & Crowley, M. J. (2010) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-010-1021-z · Cited by 57 · see citing works
Dating Trajectories From Middle to High School: Association With Academic Performance and Drug Use
Orpinas, P., Horne, A. M., Song, X., Reeves, P. M., & Hsieh, H. (2013) · Journal of Research on Adolescence · doi:10.1111/jora.12029 · Cited by 45 · see citing works
Ever Vigilant: Maternal Support of Participation in Daily Life for Boys with Autism
Larson, E. A. (2010) · Physical & Occupational Therapy In Pediatrics · doi:10.3109/01942630903297227 · Cited by 42 · see citing works
Loutzenhiser, L., & Hadjistavropoulos, H. D. (2008) · Journal of Interprofessional Care · doi:10.1080/13561820801886487 · Cited by 32 · see citing works
Phenomenological research in compulsory land acquisition and compensation
Kakulu, I. I., Byrne, P. J., & Viitanen, K. (2009) · CentAUR (University of Reading) · Cited by 10 · see citing works
Autism in school-age chidren. A complex collage of development, behavior and communication.
Cole, L. L. (2008) · PubMed · Cited by 5 · see citing works
Flagged first, then by citations
Cited by
Sorted by citations
Healthcare Providers’ Experiences with Autism: A Scoping Review
Morris, R., Greenblatt, A., & Saini, M. (2019) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-019-03912-6 · Cited by 167 · see citing works
Robards, F. J., Kang, M. S., Usherwood, T. P., & Sanci, L. A. (2018) · Journal of Adolescent Health · doi:10.1016/j.jadohealth.2017.10.018 · Cited by 160 · see citing works
Walsh, C., Lydon, S., O’Dowd, E., & O’Connor, P. (2020) · Developmental Neurorehabilitation · doi:10.1080/17518423.2020.1716868 · Cited by 107 · see citing works
O’Neill, L. P., & Murray, L. (2016) · Research in Developmental Disabilities · doi:10.1016/j.ridd.2015.12.017 · Cited by 64 · see citing works
Medical care experiences of children with autism and their parents: A scoping review
Wilson, S. A., & Peterson, C. C. (2018) · Child Care Health and Development · doi:10.1111/cch.12611 · Cited by 61 · see citing works
Mahoney, W. J., Villacrusis, M., Sompolski, M., Iwanski, B., Charman, A., Hammond, C. A., & Abraham, G. (2021) · Journal for Specialists in Pediatric Nursing · doi:10.1111/jspn.12332 · Cited by 41 · see citing works
Boshoff, K., Bowen‐Salter, H., Gibbs, D., Phillips, R. L., Porter, L., & Wiles, L. (2021) · Health & Social Care in the Community · doi:10.1111/hsc.13369 · Cited by 35 · see citing works
Shogren, K. A., Wehmeyer, M. L., Seo, H., Thompson, J. R., Schalock, R. L., Hughes, C., Little, T. D., & Palmer, S. B. (2016) · Focus on Autism and Other Developmental Disabilities · doi:10.1177/1088357615625060 · Cited by 27 · see citing works
Jensen, E. J., Geisthardt, C. L., & Sarigiani, P. A. (2019) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-019-04245-0 · Cited by 25 · see citing works
Morris, R., Muskat, B., & Greenblatt, A. (2018) · Social Work in Health Care · doi:10.1080/00981389.2018.1461730 · Cited by 24 · see citing works
Social Support Experiences in Parents of Children With ASD: A Qualitative Systematic Review
Gao, X., & Drani, S. (2025) · SAGE Open · doi:10.1177/21582440251336174 · Cited by 21 · see citing works
Mothers’ perspectives of co-occurring fatigue in children with autism spectrum disorders
Keville, S., Meek, C., & Ludlow, A. (2021) · Fatigue Biomedicine Health & Behavior · doi:10.1080/21641846.2021.2008169 · Cited by 20 · see citing works
Ran, Q., Tu, L., Wu, Y., Zhang, S., Zhang, E., Li, H., Su, Y., & Xiang, M. (2023) · Frontiers in Public Health · doi:10.3389/fpubh.2023.1282778 · Cited by 14 · see citing works
Ho, H., Fergus, K. D., & Perry, A. (2018) · Research in Autism · doi:10.1016/j.rasd.2018.05.004 · Cited by 14 · see citing works
Occupational Therapy Shared Decision Making in Adolescent Mental Health
Tam‐Seto, L., & Versnel, J. (2015) · Occupational Therapy in Mental Health · doi:10.1080/0164212x.2015.1036194 · Cited by 9 · see citing works
Joung, W. J. (2023) · Asian Nursing Research · doi:10.1016/j.anr.2023.09.001 · Cited by 7 · see citing works
Parenting a Child with a Disability: A Review of Caregivers’ Needs in India and Service Implications
Gokhale, C. (2021) · Springer eBooks · doi:10.1007/978-981-16-1554-2_15 · Cited by 7 · see citing works
Berg, K. A., Ishler, K. J., Lytle, S., Kaplan, R. S., Wang, F. “., Olgac, T., Miner, S., Edguer, M. N., & Biegel, D. E. (2023) · Autism Research and Treatment · doi:10.1155/2023/6597554 · Cited by 6 · see citing works
Autism Cognizance: A dilemma among medical and Allied Medical practitioners
Akhter, N., Mumtaz, N., & Saqulain, G. (2020) · Pakistan Journal of Medical Sciences · doi:10.12669/pjms.36.4.1703 · Cited by 6 · see citing works
Bond, L., Frawley, T., Moore, K., Gavin, B. E., & McNicholas, F. (2024) · Irish Journal of Medical Science (1971 -) · doi:10.1007/s11845-024-03850-y · Cited by 5 · see citing works
Klinepeter, E., Choate, J. D., Hall, T. N., & Gibbs, K. D. (2024) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-024-06573-2 · Cited by 5 · see citing works
Gustafsson, B. M., & Sund‐Levander, M. (2022) · Children s Health Care · doi:10.1080/02739615.2022.2143360 · Cited by 4 · see citing works
André, T. G., Moreira, N. G., de Lucca, M., Dutra, H. S., Carlos, D. M., Fernandez-Garcia, A. O., & Nascimento, L. C. (2025) · Journal of Pediatric Nursing · doi:10.1016/j.pedn.2025.04.006 · Cited by 3 · see citing works
O’Hagan, B., Foster, S., Ursitti, A., Crable, E. L., Friedman, A., Bartolotti, L., & Krauss, S. (2023) · Journal of Developmental & Behavioral Pediatrics · doi:10.1097/dbp.0000000000001228 · Cited by 3 · see citing works
Richard, J., Thériault, M., Audas, R., Ronis, S. T., Tilleczek, K. C., Zhang, M., Bell, B. L., Slaunwhite, A., & Poirier, N. (2020) · Reflets Revue d’intervention sociale et communautaire · doi:10.7202/1067045ar · Cited by 2 · see citing works
Kolukısa, T., & Cinar, N. D. (2025) · Archives of Psychiatric Nursing · doi:10.1016/j.apnu.2025.151912 · Cited by 2 · see citing works
Pomorska, K., & Szymańska, P. (2026) · Pediatria i Medycyna Rodzinna · doi:10.15557/pimr.2025.0031 · Cited by 1 · see citing works
Yu, X., Honey, A., & Barton, R. (2026) · Disability and Rehabilitation · doi:10.1080/09638288.2026.2616390 · Cited by 1 · see citing works
Carter, J., & Iyasere, C. A. (2018) · Current clinical psychiatry · doi:10.1007/978-3-319-94458-6_5 · Cited by 1 · see citing works
Leung, C. N. W., Tsang, B., Huang, D. H., & Chan, R. W. S. (2022) · Frontiers in Psychology · doi:10.3389/fpsyg.2022.841264 · Cited by 1 · see citing works
Domarecki, P., & Plata‐Nazar, K. (2024) · Global Pediatric Health · doi:10.1177/2333794x241258657 · Cited by 1 · see citing works
Ghanouni, P., & Kavanaugh, P. (2026) · Research in Developmental Disabilities · doi:10.1016/j.ridd.2026.105222 · Cited by 1 · see citing works
Pettey, A. A. (2015) · CSUSB ScholarWorks (California State University, San Bernardino) · Cited by 1 · see citing works
Trayner, R. A. (2016) · ScholarsArchive (Brigham Young University)
Begay, K. K. (2016) · ResearchWorks at the University of Washington (University of Washington)
McCann, J. (2016) · TRAP@NCI (National College of Ireland)
Raising An Adolescent With Autism Spectrum Disorder: A Qualitative Study
Ho, H. (2016) · YorkSpace (York University)
Navigating Evidence-Based Practice: A Presentation for Parents and Caregivers
Barr, M. (2015) · Brock University Digital Repository (Brock University)
Zhu, Z. R. (2021) · ResearchOnline at James Cook University (James Cook University) · doi:10.25903/j3z7-eq55
Elger, R. S., Garrillo, M. P., Mehra, S., Louis, R., Stubben, S., Powis, R., Kirby, R. S., Tanner, J.-P., & Marshall, J. T. (2025) · Journal of Child and Family Studies · doi:10.1007/s10826-025-03174-0
Mostovoy, D., Natan, M. B., Masarwa, R., Yonai, Y., & Berkovich, Y. (2025) · Journal of Policy and Practice in Intellectual Disabilities · doi:10.1111/jppi.70023
Zeleznik, T. S., & Limbers, C. A. (2026) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-026-07401-5
Bianchi, B., Casella, S., & Guardamagna, L. (2026) · PSICOLOGIA DELLA SALUTE · doi:10.3280/pds2026-002004
- Authors
- Strunk, J. A., Pickler, R., McCain, N. L., Ameringer, S., & Myers, B. J.
- Affiliations
- James Madison University (US)
- Cincinnati Children's Hospital Medical Center (US)
- Virginia Commonwealth University (US)
- Venue
- Families, Systems, & Health
- Published
- 2014
- Volume
- 32
- Issue
- 3
- Pages
- 328-337
- ISSN
- 1091-7527 (ISSN-L)
- 1939-0602
- OpenAlex
- W2087751646
- Cited by
- 43
- References
- 39
- Citations by year
- 2026: 5 · 2025: 5 · 2024: 3 · 2023: 4 · 2022: 2 · 2021: 5 · 2020: 3 · 2019: 2 · 2018: 5 · 2016: 6 · 2015: 3
- FWCI
- 3.54
- Type
- journal article
- Language
- en
- Open access
- green
- doi.org
- Locations
- Families Systems & Health (publishedVersion)
- PubMed (publishedVersion)
- VCU Scholars Compass (Virginia Commonwealth University) (submittedVersion)
- VCULIBRARIES
- Topics
- Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
- Health Sciences › Health Professions › Speech and Hearing › Adolescent and Pediatric Healthcare
- Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
- Keywords
- autism spectrum disorder, adolescents, parental experiences, health care needs, health system navigation, medication understanding, parental support, transition to adult care
- MeSH terms
- Adolescent, Child, Child Development Disorders, Pervasive, Child Rearing, Family Relations, Female, Humans, Male, Parents, Social Support
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
Are you an author, or do you see a problem with this page? Request a review
