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Perspectives of Autistic Emerging Adults, Parents, and Practitioners on the Transition to Adulthood

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Abstract

Autism spectrum disorder (ASD) is a pervasive neurodevelopmental disorder that is characterized by impact on individuals’ socialization, communication, and behavior. The transition to adulthood can be challenging for many autistic emerging adults and their families considering the core clinical characteristics of ASD, limited social support, and lack of resources. Taken together these challenges make the transition process difficult and may yield undesirable adult outcomes. The current study examines how the process of transitioning to adulthood impacts families. We conducted six focus group interviews with autistic emerging adults (n = 6), parents of autistic transitional age youth (TAY) (n = 7), and transition related practitioners (n = 11). Thematic analysis was used to identify four themes. Autistic emerging adults described Redefining Meaningful Interpersonal Relationships as a salient domain of the transition experience. Parents discussed Being Overwhelmed by Demands and Uncertainty that Leads to Anxiety. Practitioners discussed Parents’ Lack of Readiness–that some parents may have difficulty receiving input from practitioners regarding the transition process. Our findings indicate that emerging adults’ social relationships are greatly impacted during the transition to adulthood. Parents need more support as their autistic child transitions to adulthood to best assist their child and for their own mental health. Practitioners acknowledge the importance of parents’ evolving roles during the transition process.

Highlight

  • The period of transitioning to adulthood was not only impactful for autistic emerging adults but also for parents.

  • Whereas autistic emerging adults focused on normative developmental tasks, it was a time of anxiety for parents.

  • Practitioners had concerns that some parents were not prepared for their child’s transition to adulthood.

  • The transition process can be influenced by support and education for caregiving families.

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References

  • Accardo, A. L. (2017). College-bound young adults with ASD: Self-reported factors promoting and inhibiting success. DADD Online Journal: Research to Practice, 4(1), 36–46. https://rdw.rowan.edu/education_facpub/9/.

    Google Scholar 

  • Alverson, C. Y., Lindstrom, L. E., & Hirano, K. A. (2019). High school to college: Transition experiences of young adults with autism. Focus on Autism and Other Developmental Disabilities, 34(1), 52–64. https://doi.org/10.1177/1088357615611880.

    Article  Google Scholar 

  • American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed). American Psychiatric Publishing.

  • Anderson, K., Sosnowy, C., Kuo, A., & Shattuck, P. (2018). Transition of individuals with autism to adulthood: A review of qualitative studies. Pediatrics, 141(4), 318–327. https://doi.org/10.1542/peds.2016-4300I.

    Article  Google Scholar 

  • Anthony, N., & Campbell, E. (2020). Promoting collaboration among special educators, social workers, and families impacted by autism spectrum disorders. Advances in Neurodevelopmental Disorder, 4(1), 319–324. https://doi.org/10.1007/s41252-020-00171-w.

    Article  Google Scholar 

  • Arnett, J. (2007). Emerging adulthood: What is it, and what is it good for. Child Development Perspectives, 1(2), 68–73. https://doi.org/10.1111/j.1750-8606.2007.00016.x.

    Article  Google Scholar 

  • Arnett, J. J. (2000). Emerging adulthood: A theory of development from the late teens through the twenties. American Psychologist, 55(5), 469–480. https://doi.org/10.1037/0003-066X.55.5.469.

    Article  PubMed  Google Scholar 

  • Arnett, J. (2015). Emerging adulthood (2nd ed). Oxford.

  • Benson, P. R., & Karlof, K. L. (2009). Anger, stress proliferation, and depressed mood among parents of children with ASD: A longitudinal replication. Journal of Autism and Developmental Disorders, 39(2), 350–362. https://doi.org/10.1007/s10803-008-0632-0.

    Article  PubMed  Google Scholar 

  • Biklen, D. (2005). Autism and the myth of the person alone. New York University Press.

  • Bitsko, R. H., Holbrook, J. R., Robinson, L. R., Kaminski, J. W., Ghandour, R., Smith, C., & Peacock, G. (2016). Health care, family, and community factors associated with mental, behavioral, and developmental disorders in early childhood—United States, 2011-2012. Morbidity and Mortality Weekly Report, 65, 221–226. https://doi.org/10.15585/mmwr.mm6509a1.

    Article  PubMed  Google Scholar 

  • Bowen, M. (1978). Family therapy in clinical practice. Jason Aronson.

  • Braun, V., Clarke, V., Hayfield, N., & Terry, G. (2019). Thematic Analysis. In P. Liamputtong (Eds.), Handbook of research methods in health social sciences (pp. 843-860). Springer.

  • Brock, L., Burrell, J., & Tulipano, T. (2006). NDTAC issue brief: Family involvement. Washington, DC: The National Technical Assistance Center for the Education of Children and Youth Who Are Neglected, Delinquent, or At Risk. Washington, DC: Author.

  • Burke, M. M., & Hodapp, R. M. (2014). Relating stress of mothers of children with developmental disabilities to family-school partnerships. Intellectual and Developmental Disabilities, 52(1), 13–23. https://doi.org/10.1352/1934-9556-52.1.13.

    Article  PubMed  Google Scholar 

  • Carter, E. W., Brock, M. E., & Trainor, A. A. (2012). Transition assessment and planning for youth with severe intellectual and developmental disabilities. The Journal of Special Education, 47(4), 245–255. https://doi.org/10.1177/0022466912456241.

    Article  Google Scholar 

  • Carter, N., Bryant-Lukosius, D., DiCenso, A., Blythe, J., & Neville, A. J. (2014). The use of triangulation in qualitative research. Oncology Nursing Forum, 41(5), 545–547. https://doi.org/10.1188/14.ONF.545-547.

    Article  PubMed  Google Scholar 

  • Chamak, B., & Bonniau, B. (2016). Trajectories, long-term outcomes and family experiences of 76 adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 46(3), 1084–1095. https://doi.org/10.1007/s10803-015-2656-6.

    Article  PubMed  Google Scholar 

  • Chun, J., Kuo, H.-J., Curtiss, S., Lee, G. K., Lee, H., & Awadu, J. (2022). The interplay of supports and barriers during the transition to adulthood for youth on the autism spectrum. Disability and Rehabilitation, Online first. https://doi.org/10.1080/09638288.2022.2112097

  • Cohrs, A. C., & Leslie, D. L. (2017). Depression in parents of children diagnosed with autism spectrum disorder: A claims-based analysis. Journal of Autism and Developmental Disorders, 47(1), 1416–1422. https://doi.org/10.1007/s10803-017-3063-y.

    Article  PubMed  Google Scholar 

  • Creswell, J. W. (2018). Research design: Qualitative, quantitative, and mixed methods approaches (5th ed). SAGE.

  • Cribb, S., Kenny, L., & Pellicano, E. (2019). ‘I definitely feel more in control of my life’: The perspectives of young autistic people and their parents on emerging adulthood. Autism, 23(7), 1765–1781. https://doi.org/10.1177/1362361319830029.

    Article  PubMed  Google Scholar 

  • Cullen, J. A. (2015). The needs of college students with autism spectrum disorders and asperger's syndrome. Journal of Postsecondary Education and Disability, 28, 89–101.

    Google Scholar 

  • Curtiss, S., Lee, G. K., Chun, J., Lee, H., Kuo, H. J., & Ami-Narh, D. (2021). Autistic young adults, parents, and practitioners expectations of the transition to adulthood. Career Development and Transition for Exceptional Individuals, 44(3), 174–185. https://doi.org/10.1177/2165143420967662.

    Article  Google Scholar 

  • Davey, L. (2020). Using the special interests of autistic children to facilitate meaningful engagement and learning. Good Autism. Practice, 21(1), 43–64. https://www.bild.org.uk/wp-content/uploads/2020/01/Davey-GAP-May-2020.pdf

    Google Scholar 

  • First, J., Cheak-Zamora, N. C., & Teti, M. (2016). A qualitative study of stress and coping when transitioning to adulthood with autism spectrum disorder. Journal of Family Social Work, 19(3), 220–236. https://doi.org/10.1080/10522158.2016.1185074.

    Article  Google Scholar 

  • Gadd, T., & Cronin, S. (2018). A national framework for person-centered planning in services for persons with a disability. https://www.hse.ie/eng/services/list/4/disability/newdirections/framework-person-centred-planning-services-for-persons-with-a-disability.pdf.

  • Gurbuz, E., Hanley, M., & Riby, D. M. (2019). University students with autism: The social and academic experiences of university in the UK. Journal of autism and developmental disorders, 49, 617–631. https://doi.org/10.1007/s10803-018-3741-4.

    Article  PubMed  Google Scholar 

  • Hagner, D. (2010). The role of naturalistic assessment in vocational rehabilitation. Journal of Rehabilitation, 76(1), 28–34. https://www.researchgate.net/publication/274710013

    Google Scholar 

  • Hagner, D., Kurtz, A., Cloutier, H., Arakelian, C., Brucker, D. L., & May, J. (2012). Outcomesof a family-centered transition process for students with autism spectrum disorders. Focus on Autism and Other Developmental Disabilities, 27(1), 42–50. https://doi.org/10.1177/1088357611430841.

    Article  Google Scholar 

  • Havlicek, J., Bilaver, L., & Beldon, M. (2015). Barriers and facilitators of the transition to adulthood for foster youth with autism spectrum disorder: Perspectives of service providers in Illinois. Children and Youth Services Review, 60(1), 119–128. https://doi.org/10.1016/j.childyouth.2015.11.025.

    Article  Google Scholar 

  • Hees, V., Roeyers, H., & De Mol, J. (2018). Students with autism spectrum disorder and their parents in the transition into higher education: Impact on dynamics in the parent–child relationship. Journal of Autism and Developmental Disorders, 48(10), 3296–3310. https://doi.org/10.1007/s10803-018-3593-y.

    Article  PubMed  Google Scholar 

  • Henninger, N. A., & Taylor, J. L. (2013). Outcomes in adults with autism spectrum disorders: A historical perspective. Autism: The International Journal of Research and Practice, 17(1), 103–116. https://doi.org/10.1177/1362361312441266.

    Article  PubMed  Google Scholar 

  • Huguet, G., Benabou, M., & Bourgeron, T. (2016). The genetics of autism spectrum disorders. In P. Sassone-Corsi & Y. Christen (Eds.), A Time for Metabolism and Hormones (pp.101-129). Springer.

  • Hull, L., Petrides, K. V., & Mandy, W. (2020). The female autism phenotype and camouflaging: A narrative review. Review Journal of Autism Developmental Disorders, 7(1), 306–317. https://doi.org/10.1007/s40489-020-00197-9.

    Article  Google Scholar 

  • Jansen, D., Emmers, E., Petry, K., Mattys, L., Noens, I., & Baeyens, D. (2018). Functioning and participation of young adults with ASD in higher education according to the ICF framework. Journal of further and Higher Education, 42(2), 259–275. https://doi.org/10.1080/0309877X.2016.1261091.

    Article  Google Scholar 

  • Kerr, M. E., & Bowen, M. (1988). Family evaluation: An approach based on Bowen theory. W. W. Norton & Company

  • Krueger, R. A., & Casey, M. (2015). Focus groups: A practical guide for applied research (5th ed). SAGE.

  • Lee, G. K., Curtiss, S., Kuo, H.-J., Chun, C., Lee, H.-K., & Nimako, D. D. (2021). The role of acceptance of successful transition: A multi-informant comparison among practitioners, families and transition-age individuals with autism. Journal of Autism and Other Developmental Disorders. Advance online publication.

  • Levy, A., & Perry, A. (2011). Outcomes in adolescents and adults with autism: A review of the literature. Research in Autism Spectrum Disorders, 5(4), 1271–1282. https://doi.org/10.1016/j.rasd.2011.01.023.

    Article  Google Scholar 

  • Lincoln, Y. S., & Guba, E. G. (2000). Paradigmatic controversies, contradictions, and emerging confluences. In N. K. Denzin & Y. S. Lincoln (Eds.), The handbook of qualitative research (pp. 163–188). SAGE.

  • Lynch, A. D., Lerner, R. M., & Leventhal, T. (2013). Adolescent academic achievement and school engagement: An examination of the role of school-wide peer culture. Journal of Youth and Adolescence, 42(1), 6–19. https://doi.org/10.1007/s10964-012-9833-0.

    Article  PubMed  Google Scholar 

  • Maenner, M. J., Shaw, K. A., Bakian, A. V., Bilder, D. A., Durkin, M. S., Esler, A., ... & Cogswell, M. E. (2021). Prevalence and characteristics of autism spectrum disorder among children aged 8 years—autism and developmental disabilities monitoring network, 11 sites, United States, 2018. MMWR Surveillance Summaries, 70(11), 1. https://doi.org/10.15585/mmwr.ss7011a1externalicon.

  • Maietta, R. C., Petruzzelli, J., Hamilton, A., & Mihas, P. (March, 2016). Qualitative data analysis camp: Three and a half days of analysis, instruction, mentioning and data work. Carrboro: Workshop presented at ResearchTalk.

  • Maxwell, J. A. (2013). Qualitative research design: An interactive approach (3rd ed). SAGE.

  • McMinn, L. E., Schulz, J., & Ludlow, A. K. (2019). Mothers’experiences of the transition of young people with autism spectrum disorder to adult care. Research and Practice in Intellectual and Developmental Disabilities, 6(2), 129–138. https://doi.org/10.1080/23297018.2018.1428497.

    Article  Google Scholar 

  • Newman, L., Wagner, M., Knokey, A. M., Marder, C., Nagle, K., Shaver, D., & Wei, X. (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). NCSER 2011-3005. National Center for Special Education Research.

  • Osgood, D. W., Foster, E. M., & Courtney, M. E. (2010). Vulnerable populations and the transition to adulthood. The Future of Children, 20(1), 209–229. https://doi.org/10.1353/foc.0.0047.

    Article  PubMed  Google Scholar 

  • Ponterotto, J. G. (2006). Brief note on the origins, evolution, and meaning of the qualitative research concept thick description. The Qualitative Report, 11(3), 538–549. https://doi.org/10.46743/2160-3715/2006.1666.

    Article  Google Scholar 

  • Reupert, A., Ward, B., McCormick, F., Ward, C., Waller, S., & Kidd, S. (2018). Developing a model of family focused practice with consumers, families, practitioners and managers: a community based participatory research approach. BMC Health Services Research, 18(1), 66–75. https://doi.org/10.1186/s12913-018-2844-0.

    Article  PubMed  PubMed Central  Google Scholar 

  • Roux A. M., Rast J. E., Anderson K. A., and Shattuck P. T. (2017). National autism indicators report: developmental disability services and outcomes in adulthood. Philadelphia, PA: Life Course Outcomes Program, A.J. Drexel Autism Institute, Drexel University.

  • Roux, A. M., Shattuck, P. T., Rast, J. E., Rava, J. A., & Anderson, K. A. (2015). National autism indicators report: Transition into young adulthood. Philadelphia, PA: Life Course Outcomes Research Program, A.J. Drexel Autism Institute, Drexel University.

  • Sandelowski, M. (1995). Sample-size in qualitative research. Research in Nursing & Health, 18(2), 179–183. https://doi.org/10.1002/nur.4770180211.

    Article  Google Scholar 

  • Sansosti, F., Powell-Smith, K. & Cowan, R. (2010). High functioning autism/asperger syndrome in schools: Assessment and intervention. Guilford Press.

  • Seltzer, M. M., Greenberg, J. S., Hong, J., Smith, L. E., Almeida, D. M., Coe, C., & Stawski, R. S. (2010). Maternal cortisol levels and behavior problems in adolescents and adults with ASD. Journal of Autism and Developmental Disorders, 40(4), 457–469. https://doi.org/10.1007/s10803-009-0887-0.

    Article  PubMed  PubMed Central  Google Scholar 

  • Severs, R. N., Noel, C. R., Talley, R. C., & Getch, Y. Q. (2020). A collaborative perspectives approach for effective care coordination in autism spectrum disorder. Advances in Neurodevelopmental Disorders, 4(2), 176–189. https://doi.org/10.1007/s41252-020-00154-x.

    Article  Google Scholar 

  • Shattuck, P. T., Wagner, M., Narendorf, S. C., Sterzing, P., & Hensley, M. (2011). Post-high school service use among young adults with an autism spectrum disorder. Archives of Pediatric and Adolescent Medicine, 165(2), 141–146. https://doi.org/10.1001/archpediatrics.2010.279.

    Article  Google Scholar 

  • Shattuck, P. T., Marsha, M. S., Greenberg, J. S., Orsmond, G. I., Bolt, D., Kring, S., Lounds, J., & Lord, C. (2007). Change in autism symptoms and maladaptive behaviors in adolescents and adults with an autism spectrum disorder. Journal of Autism and Developmental Disorders, 37(9), 1735–1747. https://doi.org/10.1007/s10803-006-0307-7.

    Article  PubMed  Google Scholar 

  • Shepherd, D., Landon, J., & Goedeke, S. (2018). Symptom severity, caregiver stress and intervention helpfulness assessed using ratings from parents caring for a child with autism. Autism, 22(5), 585–596. https://doi.org/10.1177/1362361316688869.

    Article  PubMed  Google Scholar 

  • Shogren, K., & Plotner, A. (2012). Transition planning for students with intellectual disability, autism, or other disabilities: Data from the National Longitudinal Transition Study-2. Intellectual and Developmental Disabilities, 50(1), 16–30. https://doi.org/10.1352/1934-9556-50.1.16.

    Article  PubMed  Google Scholar 

  • Snell-Rood, C., Ruble, L., Kleinert, H., McGrew, J. H., Adams, M., Rodgers, A., Odom, J., Wong, W. H., & Yu, Y. (2020). Stakeholder perspectives on transition planning, implementation, and outcomes for students with autism spectrum disorder. Autism, 24(5), 1164–1176. https://doi.org/10.1177/1362361319894827.

    Article  PubMed  PubMed Central  Google Scholar 

  • Spiers, G. (2015). Choice and caring: The experiences of parents supporting young people with autistic spectrum conditions as they move into adulthood. Childhood and Society, 29(6), 546–557. https://doi.org/10.1111/chso.12104.

    Article  Google Scholar 

  • Taylor, J. L., & Seltzer, M. M. (2010). Changes in the autism behavioral phenotype during the transition to adulthood. Journal of Autism and Developmental Disorders, 40(12), 1431–1446. https://doi.org/10.1007/s10803-010-1005-z.

    Article  PubMed  PubMed Central  Google Scholar 

  • Trach, J. S. (2012). Degree of collaboration for successful transition outcomes. Journal of Rehabilitation, 78(2), 39–48.

    Google Scholar 

  • Trainor, A. A., Carter, E. W., Karpur, A., Martin, J. E., Mazzotti, V. L., Morningstar, M. E., … & Rojewski, J. W. (2020). A framework for research in transition: Identifying important areas and intersections for future study. Career Development and Transition for Exceptional Individuals, 43(1), 5–17. https://doi.org/10.1177/2165143419864551.

  • Trivette, C. M., Dunst, C. J., & Hamby, D. W. (2010). Influences of family-systems intervention practices on parent-child interactions and child development. Topics in Early Childhood Special Education, 30(1), 3–19. https://doi.org/10.1177/0271121410364250.

    Article  Google Scholar 

  • Vincent, J. (2019). It’s the fear of the unknown: Transition from higher education for young autistic adults. Autism, 23(6), 1575–1585. https://doi.org/10.1177/1362361318822498.

    Article  PubMed  Google Scholar 

  • Volkers, N. (2018). Invisible girls. The ASHA Leader, 23(4), 48–55. https://doi.org/10.1044/leader.FTR1.23042018.48.

    Article  Google Scholar 

  • Volkmar, F. R., Jackson, S., & Hart, L. (2017). Transition issues and challenges for youth with autism spectrum disorders. Pediatric Annals, 46(6), 219–223. https://doi.org/10.3928/19382359-20170519-03.

    Article  Google Scholar 

  • Wehman, P., Schall, C., Carr, S., Targett, P., West, M., & Cifu, G. (2014). Transition from school to adulthood for youth with autism spectrum disorder: What we know and what we need to know. Journal of Disability Policy Studies, 25(1), 30–40. https://doi.org/10.1177/1044207313518071.

    Article  Google Scholar 

  • Wehman, P. (2020). Essentials of Transition Planning. Brookes Publishing.

  • Winek, J. L. (2010). Systemic family therapy: From theory to practice. Sage Publishing.

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Authors and Affiliations

  1. College of Education, California State University, Sacramento, 6000 J St, Sacramento, 95819, CA, USA

    Heekyung Lee

  2. Department of Counseling, Educational Psychology and Special Education, Michigan State University, 620 Farm Lane, East Lansing, 48824, MI, USA

    Gloria K. Lee, Hung-Jen Kuo & Christiana Okyere

  3. Department of Rehabilitation Psychology and Special Education, University of Wisconsin-Madison, 000 Bascom Mall, Madison, 53706, WI, USA

    Jina Chun

  4. School of Education, University of Delaware, 25 N. College, Ave., Newark, 19706, DE, USA

    Sarah L. Curtiss

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  1. Heekyung Lee
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Lee, H., Lee, G.K., Chun, J. et al. Perspectives of Autistic Emerging Adults, Parents, and Practitioners on the Transition to Adulthood. J Child Fam Stud 32, 938–950 (2023). https://doi.org/10.1007/s10826-022-02430-x

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