To determine whether functional self-care skills and presence of behavior problems in youth with developmental disabilities are associated with parents planning for the youth’s transition to adulthood.
This multi-site study consisted of 167 parents of youth aged 10–22 years with autism spectrum disorder, ADHD and/or other developmental disabilities who completed a questionnaire on transition to adulthood. Parent-rated child self-care status was measured using a six-item scale that had excellent reliability (Cronbach’s alpha=0.90).
Multivariable logistic regression models revealed that parents were less likely to plan for the youth’s transition to adulthood if their child needed more assistance with functional self-care skills (OR 0.78, 95% CI 0.63–0.96, p=.021). Despite this unexpected finding, greater child need for assistance with self-care was associated with lower parental expectations that their children would live independently by age 22 (OR 0.40, 95%CI 0.24–0.66, p<.001) and 35 (OR 0.47, 95%CI 0.35–0.63, p<.001). The presence of behavioral problems (aggression, sexual behaviors and safety issues) was also associated with lower odds of parental expectations that their child would live independently in adulthood.
Despite this unexpected finding, greater child need for assistance with self-care was associated with lower parental expectations that their children would live independently by age 22 (OR 0.40, 95%CI 0.24–0.66, p<.001) and 35 (OR 0.47, 95%CI 0.35–0.63, p<.001). The presence of behavioral problems (aggression, sexual behaviors and safety issues) was also associated with lower odds of parental expectations that their child would live independently in adulthood. Despite parents’ awareness of the difficulties their children will face, less youth independence with self-care skills was associated with lower odds of plans for transition to adulthood and expectations for independent living. Results support the need for continued interventions targeted at improving daily living skills to achieve functional independence in adulthood, as well as interventions focused on aggression, safety and sexuality of the individuals.
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Autism Spectrum Disorder
Attention Deficit Hyperactivity Disorder
Youth with Special Health Care Needs
American Academy of Pediatrics, American Academy of Family Physicians, & American College of Physicians - American Society of Internal Medicine. (2002). A consensus statement on health care transitions for young adults. Pediatrics, 110(Supplement 3), 1304–1306. https://doi.org/10.1542/peds.110.6.S1.1304.
American Academy of Pediatrics, American Academy of Family Physicians, and American College of Physicians, T. C. R. A. G. (2011). Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics, 128(1), 182–200. https://doi.org/10.1542/peds.2011-0969.
Anderson, K. A., Sosnowy, C., Kuo, A. A., & Shattuck, P. (2018). Transition of individuals with autism to adulthood : A review of qualitative studies. Pediatrics, 141(s4), e20164300.
Aragon, S., & Education Commission of the States. (2015). Free and compulsory school age requirements. https://www.ecs.org/clearinghouse/01/18/68/11868.pdf
Bal, V. H., Kim, S., Cheong, D., & Lord, C. (2015). Daily living skills in individuals with autism spectrum disorder from 2 to 21 years of age. Autism, 19(7), 774–784. https://doi.org/10.1177/1362361315575840.
Blum, N. J., Feldman, H. M., Barbaresi, W. J., Schonfeld, D. J., Hansen, R. L., & Forrest, C. B. (2012). Research priorities for developmental-behavioral pediatrics: A DBPNet consensus study. Journal of Developmental and Behavioral Pediatrics, 33(6), 509–516.
Cadman, T., Eklund, H., Howley, D., Hayward, H., Clarke, H., Findon, J., Xenitidis, K., Murphy, D., Asherson, P., & Glaser, K. (2012). Caregiver burden as people with autism spectrum disorder and attention-deficit/hyperactivity disorder transition into adolescence and adulthood in the United Kingdom. Journal of the American Academy of Child and Adolescent Psychiatry, 51(9), 879–888. https://doi.org/10.1016/j.jaac.2012.06.017.
Cheak-Zamora, N. C., Yang, X., Farmer, J. E., & Clark, M. (2013). Disparities in transition planning for youth with autism spectrum disorder. Pediatrics, 131(3), 447–454. https://doi.org/10.1542/peds.2012-1572.
Cheak-Zamora, N. C., Teti, M., Maurer-Batjer, A., & Koegler, E. (2017). Exploration and comparison of adolescents with autism spectrum disorder and their caregiver’s perspectives on transitioning to adult health care and adulthood. Journal of Pediatric Psychology, 42(May), 1028–1039. https://doi.org/10.1093/jpepsy/jsx075.
Chen, J., Cohn, E. S., & Orsmond, G. I. (2019). Parents’ future visions for their autistic transition-age youth: Hopes and expectations. Autism, 23(6), 1363–1372. https://doi.org/10.1177/1362361318812141.
Davis, A. M., Brown, R. F., Taylor, J. L., Epstein, R. A., & McPheeters, M. L. (2014). Transition Care for Children with Special Health Care Needs. Pediatrics, 134(5), 900–908. https://doi.org/10.1542/peds.2014-1909.
Duncan, A., & Bishop, S. (2015). Understanding the gap between cognitive abilities and daily living skills in adolescents with autism spectrum disorders with average intelligence. Autism, 19(1), 64–72. https://doi.org/10.1177/1362361313510068.
Fernandes, S. M., O’Sullivan-Oliveira, J., Landzberg, M. J., Khairy, P., Melvin, P., Sawicki, G. S., Ziniel, S., Kenney, L. B., Garvey, K. C., Sobota, A., O’Brien, R., Nigrovic, P. A., Sharma, N., & Fishman, L. N. (2014). Transition and transfer of adolescents and young adults with pediatric onset chronic disease: The patient and parent perspective. Journal of Pediatric Rehabilitation Medicine, 7(1), 43–51. https://doi.org/10.3233/PRM-140269.
Fletcher-Johnston, M., Marshall, S. K., & Straatman, L. (2011). Healthcare transitions for adolescents with chronic life-threatening conditions using a Delphi method to identify research priorities for clinicians and academics in Canada. Child: Care, Health and Development, 37(6), 875–882. https://doi.org/10.1111/j.1365-2214.2011.01318.x.
Gerhardt, P., & Crimmins, D. (2013). Social skills and adaptive behavior in learners with autism spectrum disorders (1st ed.). Brookes Publishing Company.
Gotham, K., Marvin, A. R., Taylor, J. L., Anderson, C. M., Law, P. A., Law, J. K., & Lipkin, P. H. (2015). Characterizing the daily life, needs, and priorities of adults with ASD from interactive autism network data. Autism, 19(7), 794–804. https://doi.org/10.1177/1362361315583818.
Gray, K. M., Keating, C. M., Taffe, J. R., Brereton, A. V., Einfeld, S. L., Reardon, T. C., & Tonge, B. J. (2014). Adult outcomes in autism: Community inclusion and living skills. Journal of Autism and Developmental Disorders, 44(12), 3006–3015. https://doi.org/10.1007/s10803-014-2159-x.
Holmes, L. G., Kirby, A. V., Strassberg, D. S., & Himle, M. B. (2019). Parent expectations and preparatory activities as adolescents with ASD transition to adulthood. Journal of Autism and Developmental Disorders, 48(9), 2925–2937. https://doi.org/10.1007/s10803-018-3545-6.
Kane, D. J., Kasehagen, L., Punyko, J., Carle, A. C., Penziner, A., & Thorson, S. (2009). What factors are associated with state performance on provision of transition services to CSHCN? Pediatrics, 124 Suppl(December 2009), S375–S383. https://doi.org/10.1542/peds.2009-1255H.
Kanne, S. M., Gerber, A. J., Quirmbach, L. M., Sparrow, S. S., Cicchetti, D. V., & Saulnier, C. A. (2011). The role of adaptive behavior in autism spectrum disorders: Implications for functional outcome. Journal of Autism and Developmental Disorders, 41(8), 1007–1018. https://doi.org/10.1007/s10803-010-1126-4.
Kaufman, M., Pinzon, J., Canadian Paediatric Society & Adolescent Health Committee. (2007). Position statement: Transition to adult care for youth with special health care needs. Reaffirmed: Feb 28 2018. Paediatrics & Child Health, 12(9), 785–788 https://www.cps.ca/en/documents/position/transition-youth-special-needs.
Kingsnorth, S., Gall, C., Beayni, S., & Rigby, P. (2011). Parents as transition experts? Qualitative findings from a pilot parent-led peer support group. Child: Care, Health and Development, 37(6), 833–840. https://doi.org/10.1111/j.1365-2214.2011.01294.x.
Kirby, A. V. (2016). Parent expectations mediate outcomes for young adults with autism Spectrum disorder. Journal of Autism and Developmental Disorders, 46(5), 1643–1655. https://doi.org/10.1007/s10803-015-2691-3.
Klin, A., Saulnier, C., Sparrow, S., Cicchetti, D., Volkmar, F., & Lord, C. (2007). Social and communication abilities and disabilities in higher functioning individuals with autism spectrum disorders: The Vineland and the ADOS. Journal of Autism and Developmental Disorders, 37(4), 748–759 17146708.
Kuhlthau, K. A., Warfield, M. E., Hurson, J., Delahaye, J., & Crossman, M. K. (2015). Pediatric provider’s perspectives on the transition to adult health care for youth with autism spectrum disorder: Current strategies and promising new directions. Autism, 19(3), 262–271. https://doi.org/10.1177/1362361313518125.
Lotstein, D. S., Ghandour, R., Cash, A., McGuire, E., Strickland, B., & Newacheck, P. (2009). Planning for health care transitions: Results from the 2005-2006 National Survey of children with special health care needs. Pediatrics, 123(1), e145–e152. https://doi.org/10.1542/peds.2008-1298.
Lotstein, D. S., Kuo, A., Strickland, B., & Tait, F. (2010). The transition to adult health care for youth with special health care needs: do racial and ethnic disparities exist? Pediatrics, 126 Suppl(December), S129–S136. https://doi.org/10.1542/peds.2010-1466F
Matthews, N. L., Smith, C. J., Pollard, E., Ober-Reynolds, S., Kirwan, J., & Malligo, A. (2015). Adaptive functioning in autism spectrum disorder during the transition to adulthood. Journal of Autism and Developmental Disorders., 45, 2349–2360. https://doi.org/10.1007/s10803-015-2400-2.
McManus, M. A., Pollack, L. R., Cooley, W. C., McAllister, J. W., Lotstein, D., Strickland, B., & Mann, M. Y. (2013). Current status of transition preparation among youth with special needs in the United States. Pediatrics, 131(6), 1090–1097. https://doi.org/10.1542/peds.2012-3050.
McNair, J., & Rusch, F. (1991). Parent involvement in transition programs. Mental Retardation, 29(2), 93–101.
McPheeters, M., Davis, A. M., Taylor, J. L., Brown, R. F., Potter, S. A., & Epstein, R. A. (2014). Transition Care for Children With Special Health Needs. Technical Brief No. 15. Agency for Healthcare Research and Quality.https://www.effreports/reports/final.cfm.
Morningstar, M. E., Turnbull, A. P., & Turnbull, H. R. (1995). What do students with disabilities tell us about the importance of family involvement in the transition from school to adult life? Exceptional Children, 62(3), 249–260.
Morningstar, M. E., Bassett, D. S., Cashman, J., Kochhar-Bryant, C., & Wehmeyer, M. (2012). Aligning transition services with educational reform: A position statement on the division on career development and transition. Career Development and Transition for Exceptional Individuals, 35(3), 132–142. https://doi.org/10.1177/2165143412454915.
Newman, L., Wagner, M., Knokey, A., Marder, C., Nagle, K., Shaver, D., Wei, X., & with Cameto, R., Contreras, E., Ferguson, K, Greene, S. and Schwarting, M. (2011). The post-high school outcomes of young adults with disabilities up to 8 years after high school. A Report from the National Longitudinal Transition Study-2 (NLTS2).
Raghavan, R., Pawson, N., & Small, N. (2013). Family carers’ perspectives on post-school transition of young people with intellectual disabilities with special reference to ethnicity. Journal of Intellectual Disability Research, 57(10), 936–946. https://doi.org/10.1111/j.1365-2788.2012.01588.x.
Reiss, J. G., Gibson, R. W., & Walker, L. R. (2005). Health care transition: Youth, family, and provider perspectives. Pediatrics, 115(1), 112–120. https://doi.org/10.1542/peds.2004-1321.
Rouble, L., McGrew, J. H., Wong, V., & Yu, Y. (2019). A preliminary study of parent activation, parent-teacher alliance, transition planning quality, and IEP and postsecondary goal attainment of students with ASD. Journal of Autism and Developmental Disorders, 49(8), 3231–3243. https://doi.org/10.1007/s10803-019-04047-4.
Roux, A. M., Shattuck, P. T., Rast, J. E., Rava, J. A., Anderson, K., & A. (2015). National Autism Indicators Report. Life course outcomes research program. A.J. Drexel Autism Institute: Drexel University.
Roux, A. M., Rast, J. E., Anderson, K. A., & Shattuck, P. T. (2017). National Autism Indicators Report: Developmental Disablity Services and Outcomes in Adulthood. Life course outcomes research program. A.J. Drexel Autism Institute: Drexel University.
Schlucter, J., Dokken, D., & Ahmann, E. (2015). Transitions from pediatric to adult care : Programs and resources. Pediatric Nursing, 41(2), 85–88.
Skinner, C., Pauly, R., Skinner, S. A., Schroer, R. J., Simensen, R. J., Taylor, H. A., Friez, M. J., DuPont, B. R., & Stevenson, R. E. (2020). Autistic disorder: A 20 year chronicle. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-020-04568-3.
Timmons, J., Whitney-Thomas, J., McIntyre, J., Butterworth, J., & Allen, D. (2004). Managing service delivery systems and the role of parents during their children’s transitions. Journal of Rehabilitation, 70(2), 19–26.
U.S. Department of Health and Human Services, Health Resources and Services Administration, & Maternal and Child Health Bureau. (2013). The national survey of children with special health care needs: Chartbook 2009–2010. June, 1–109.
This study was partially funded by the MEDTAPP Healthcare Access (HCA) Initiative and utilized federal financial participation funds through the Ohio Department of Medicaid. The MEDTAPP HCA Initiative partners with Ohio’s colleges and universities to support the development and retention of additional healthcare providers to better serve the Ohio Medicaid population using emerging, interdisciplinary, and evidence-based care models. Views stated in this manuscript are those of the researchers only and are not attributed to the study sponsors, the Ohio Department of Medicaid or to the Federal Medicaid Program. The authors would also like to acknowledge the Clinical and Translational Science Award (CTSC) UL1TR 000439 for use of the REDCap software. Lastly, the authors acknowledge the support of the University of Maryland, Baltimore, Institute for Clinical & Translational Research (ICTR).
The authors have no financial relationships relevant to this article to disclose.
This study was partially funded by the MEDTAPP Healthcare Access (HCA) Initiative and utilized federal financial participation funds through the Ohio Department of Medicaid.
Conflict of Interest
Dr. Frazier has received federal funding or research support from, acted as a consultant to, received travel support from, and/or received a speaker’s honorarium from the Cole Family Research Fund, Simons Foundation, Ingalls Foundation, Forest Laboratories, Ecoeos, IntegraGen, Kugona LLC, Shire Development, Bristol-Myers Squibb, National Institutes of Health, and the Brain and Behavior Research Foundation. Dr. Perzynski reports an equity interest in Global Health Metrics and book royalty agreements with Springer Nature and Taylor Francis. The other authors have indicated they have no potential conflicts of interest to disclose.
Ethics Approval and Consent to Participate
This study was approved by the Institutional Review Boards at University Hospitals and the Cleveland Clinic and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
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This author consents for the publication of this manuscript.
Consent to particiate was obtained from the participants completing the survey instrument.
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Reyes, C., Perzynski, A., Kralovic, S. et al. Factors Associated with Transition Planning in Autism and Other Developmental Disabilities. J Dev Phys Disabil (2021). https://doi.org/10.1007/s10882-020-09785-3
- Transition to adulthood
- Developmental disabilities
- Parental perspectives