Autism Spectrum Disorder and Transition-Aged Youth

Abstract

Purpose of Review

This article discusses common issues surrounding transition to adulthood in youth with autism spectrum disorder (ASD). We review recent evidence on co-occurring medical and mental health conditions and topics of education and employment, sexuality and relationships, independent living, and financial support.

Recent Findings

Transitioning individuals with ASD have increased risk for several medical and behavioral health comorbidities and should be routinely screened for co-occurring conditions. Evidence on interventions for mental health disorders is limited but emerging, particularly with respect to mindfulness training and cognitive behavioral therapy. Many autistic adults or their families express a desire for independent living, participation in education/employment, and intimacy and social relationships, but they often lack skills and/or resources to successfully achieve these outcomes.

Summary

The time of transition to adulthood for adolescents with ASD is an opportunity for physicians to provide anticipatory guidance and necessary supports around issues of community participation. To allow time for planning, these discussions should occur well before the child reaches adulthood. Clinicians should also routinely screen for and address medical and/or behavioral health comorbidities.

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References

Papers of particular interest, published recently, have been highlighted as: • Of importance

  1. 1.

    American Psychiatric Association (APA). Diagnostic and statistical manual of mental disorders. 5th ed. Arlington: American Psychiatric Publishing; 2013.

    Google Scholar 

  2. 2.

    Baio J, Wiggins L, Christensen DL, Maenner MJ, Daniels J, Warren Z, et al. Prevalence of autism spectrum disorder among children aged 8 years — autism and developmental disabilities monitoring network, 11 sites, United States, 2014. MMWR Surveill Summ. 2018;67(SS-6):1–23. https://doi.org/10.15585/mmwr.ss6706a1.

    Article  Google Scholar 

  3. 3.

    Kuhlthau K, McDonnell E, Coury DL, Payakachat N, Macklin E. Associations of quality of life with health-related characteristics among children with autism. Autism. 2017; https://doi.org/10.1177/1362361317704420.

    Article  Google Scholar 

  4. 4.

    • Lai MC, Lombardo MV, Baron-Cohen S. Autism. Lancet. 2014;383(9920):896–910. https://doi.org/10.1016/S0140-6736(13)61539-1. This recent review article summarizes the history of ASD as well as recent updates on prevalence, co-occurring conditions, outcomes, and interventions for individuals with ASD across the lifespan.

    Article  PubMed  Google Scholar 

  5. 5.

    Cheak-Zamora NC, Yang X, Farmer JE, Clark M. Disparities in transition planning for youth with autism spectrum disorder. Pediatrics. 2013;131(3):447–54. https://doi.org/10.1542/peds.2012-1572.

    Article  PubMed  Google Scholar 

  6. 6.

    Croen LA, Zerbo O, Qian Y, Massolo ML, Rich S, Sidney S, et al. The health status of adults on the autism spectrum. Autism. 2015;19(7):814–23. https://doi.org/10.1177/1362361315577517.

    Article  Google Scholar 

  7. 7.

    Shea LL, Xie M, Turcotte P, Marcus S, Field R, Newschaffer C, et al. Brief report: service use and associated expenditures among adolescents with autism spectrum disorder transitioning to adulthood. J Autism Dev Disord. 2018; https://doi.org/10.1007/s10803-018-3563-4.

    Article  Google Scholar 

  8. 8.

    • Lever AG, Geurts HM. Psychiatric co-occurring symptoms and disorders in young, middle-aged, and older adults with autism spectrum disorder. J Autism Dev Disord. 2016;46:1916–30. https://doi.org/10.1007/s10803-016-2722-8. This study explored psychopathological symptoms in a cohort of adults with ASD, stratifying by young, middle, and older adult age groups.

    Article  PubMed  PubMed Central  Google Scholar 

  9. 9.

    Kraper CK, Kenworthy L, Popal H, Martin A, Wallace GL. The gap between adaptive behavior and intelligence in autism persists into young adulthood and is linked to psychiatric comorbidities. J Autism Dev Disord. 2017;47:3007–17. https://doi.org/10.1007/s10803-017-3213-2

    Article  Google Scholar 

  10. 10.

    Weiss J, Cappadocia MC, Tint A, Pepler D. Bullying victimization, parenting stress, and anxiety among adolescents and young adults with autism spectrum disorder. Autism Res. 2015;8:727–37. https://doi.org/10.1002/aur.1488.

    Article  PubMed  Google Scholar 

  11. 11.

    Richa S, Fahed M, Khoury E, Mishara B. Suicide in autism spectrum disorders. Arch Suicide Res. 2014;18(4):327–39. https://doi.org/10.1080/13811118.2013.824834.

    Article  PubMed  Google Scholar 

  12. 12.

    • Hirvikoski T, Mittendorfer-Rutz E, Boman M, Larsson H, Lichtenstein P, Bolte S. Premature mortality in autism spectrum disorder. Br J Psychiatry. 2016;208:232–8. https://doi.org/10.1192/bjp.bp.114.160192. This large population-based study explored rates and causes of mortality of people with ASD compared to the general population, finding increased mortality rates in people with ASD regardless of level of function or gender.

    Article  PubMed  Google Scholar 

  13. 13.

    Butwicka A, Langstrom N, Larsson H, Lundstrom SE, Almqvist C, Frisen L, et al. Increased risk for substance use-related problems in autism spectrum disorders: a population-based cohort study. J Autism Dev Disord. 2017;47:80–9. https://doi.org/10.1007/s10803-016-2914-2.

    Article  Google Scholar 

  14. 14.

    Clarke T, Tickle A, Gillot A. Substance use disorder in Asperger syndrome: an investigation into the development and maintenance of substance use disorder by individuals with a diagnosis of Asperger syndrome. Int J Drug. 2016;27:154–63. https://doi.org/10.1016/j.drugpo.2015.06.003.

    Article  Google Scholar 

  15. 15.

    Mayes SD, Gorman AA, Hillwig-Garcia J, Syed E. Suicide ideation and attempts in children with autism. Res Autism Spectr Disord. 2013;7(1):109–19. https://doi.org/10.1016/j.rasd.2012.07.009.

    Article  Google Scholar 

  16. 16.

    Nylander L, Gillberg C. Screening for autism spectrum disorders in adult psychiatric outpatients: a preliminary report. Acta Psychiatr Scand. 2001;103(6):428–34. https://doi.org/10.1034/j.1600-0447.2001.00175.x.

    CAS  Article  PubMed  Google Scholar 

  17. 17.

    Nadeau J, Sulkowski ML, Ung D, Wood JJ, Lewin AB, Murphy TK, et al. Treatment of comorbid anxiety and autism spectrum disorders. Neuropsychiatry. 2011;1(6):567–78. https://doi.org/10.2217/npy.11.62.

    Article  Google Scholar 

  18. 18.

    Spain D, Sin J, Chalder T, Murphy D, Happe F. Cognitive behaviour therapy for adults with autism spectrum disorders and psychiatric co-morbidity: a review. Res Autism Spectr Disord. 2015;9:151–62. https://doi.org/10.1016/j.rasd.2014.10.019.

    Article  Google Scholar 

  19. 19.

    Sizoo BB, Kuiper E. Cognitive behavioural therapy and mindfulness based stress reduction may be equally effective in reducing anxiety and depression in adults with autism spectrum disorders. Res Dev Disabil. 2017;64:47–55. https://doi.org/10.1016/j.ridd.2017.03.004.

    Article  PubMed  Google Scholar 

  20. 20.

    Hedley D, Uljarevic M, Wilmot M, Richdale A, Dissanayake C. Brief report: social support, depression and suicidal ideation in adults with autism spectrum disorder. J Autism Dev Disord. 2017;47:3669–77. https://doi.org/10.1007/s10803-017-3274-2.

    Article  PubMed  Google Scholar 

  21. 21.

    Tyler C, Schramm S, Karafa M, Tang A, Jain A. Chronic disease risks in young adults with autism spectrum disorder: forewarned is forearmed. Am J Intellect Dev Disabil. 2011;116(5):371–80. https://doi.org/10.1352/1944-7558-116.5.371.

    Article  PubMed  Google Scholar 

  22. 22.

    Fortuna RJ, Robinson L, Smith TH, Meccarello J, Bullen B, Nobis K, et al. Health conditions and functional status in adults with autism: a cross-sectional evaluation. J Gen Intern Med. 2016;31(1):77–84. https://doi.org/10.1007/s11606-015-3509-x.

    Article  Google Scholar 

  23. 23.

    Nicolaidis C, Raymaker D, McDonald K, Dern S, Boisclair WC, Ashkenazy E, et al. Comparison of healthcare experiences in autistic and non-Autistic adults: a cross-sectional online survey facilitated by an academic-community partnership. J Gen Intern Med. 2013;28(6):761–9. https://doi.org/10.1007/s11606-012-2262-7.

    Article  Google Scholar 

  24. 24.

    Cheak-Zamora N, Teti M. “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. Autism. 2015;19(8):992–1001. https://doi.org/10.1177/1362361314558279.

    Article  PubMed  Google Scholar 

  25. 25.

    Rehm RS, Fuentes-Afflick E, Fisher LT, Chesla CA. Parent and youth priorities during the transition to adulthood for youth with special health care needs and developmental disability. Adv Nurs Sci. 2012;35(3):E57–72. https://doi.org/10.1097/ANS.0b013e3182626180.

    Article  Google Scholar 

  26. 26.

    Kohn NA, Blumenthal JA, Campbell AT. Supported decision-making: a viable alternative to guardianship. Penn St L Rev. 2012;117:1111.

    Google Scholar 

  27. 27.

    Farley M, Kristina JC, Bilder D, Viskochil J, Coon H, McMahon W. Mid-life social outcomes for a population-based sample of adults with ASD. Autism Res. 2017;11(1):142–52. https://doi.org/10.1002/aur.1897.

    Article  PubMed  Google Scholar 

  28. 28.

    Poon KK, Sidhu DJ. Adults with autism spectrum disorders: a review of outcomes, social attainment, and interventions. Curr Opin Psychiatry. 2017;30(2):77–84. https://doi.org/10.1097/YCO.0000000000000306.

    Article  PubMed  Google Scholar 

  29. 29.

    • Howlin P, Moss P. Adults with autism spectrum disorders. [Review]. Can J Psychiatr. 2012;57(5):275–83. https://doi.org/10.1177/070674371205700502. This systematic review of studies on adult outcomes in ASD spans 23 studies occurring over four decades.

    Article  Google Scholar 

  30. 30.

    White SW, Elias R, Capriola-Hall NN, Smith IC, Conner CM, Asselin SB, et al. Development of a college transition and support program for students with autism spectrum disorder. J Autism Dev Disord. 2017;47(10):3072–8. https://doi.org/10.1007/s10803-017-3236-8.

    Article  Google Scholar 

  31. 31.

    Howlin P, Moss P, Savage S, Rutter M. Social outcomes in mid- to later adulthood among individuals diagnosed with autism and average nonverbal IQ as children. J Am Acad Child Adolesc Psychiatry. 2013;52(6):572–581.e1. https://doi.org/10.1016/j.jaac.2013.02.017.

    Article  PubMed  Google Scholar 

  32. 32.

    Schmidt L, Kirchner J, Strunz S, Brozus J, Ritter K, Roepke S, et al. Psychosocial functioning and life satisfaction in adults with autism spectrum disorder without intellectual impairment. J Clin Psychol. 2015;71(12):1259–68. https://doi.org/10.1002/jclp.22225.

    Article  Google Scholar 

  33. 33.

    Gray KM, Keating CM, Taffe JR, Brereton AV, Einfeld SL, Reardon TC, et al. Adult outcomes in autism: community inclusion and living skills. J Autism Dev Disord. 2014;44:3006–15. https://doi.org/10.1007/s10803-014-2159-x.

    Article  Google Scholar 

  34. 34.

    SRI International. National Longitudinal Transition Study II (NLTS2) study design, timeline and data collection plan. 2000. Retrieved from: http://www.nlts2.org/studymeth/nlts2_design_timeline2.pdf

  35. 35.

    Shattuck PT, Narendorf SC, Cooper B, Sterzing PR, Wagner M, Taylor JL. Postsecondary education and employment among youth with an autism spectrum disorder. Pediatrics. 2012;129:1042–9.

    Article  Google Scholar 

  36. 36.

    Roux AM, Shattuck PT, Cooper BP, Anderson KA, Wagner M, Narendorf SC. Postsecondary employment experiences among young adults with an autism spectrum disorder. J Am Acad Child Adolesc Psychiatry. 2013;52(9):931–9. https://doi.org/10.1016/j.jaac.2013.05.019.

    Article  PubMed  PubMed Central  Google Scholar 

  37. 37.

    Wehman PH, Schall CM, McDonough J, Kregel J, Brooke V, Molinelli A, et al. Competitive employment for youth with autism spectrum disorders: early results from a randomized clinical trial. J Autism Dev Disord. 2014;44(3):487–500. https://doi.org/10.1007/s10803-013-1892-x.

    Article  Google Scholar 

  38. 38.

    Baldwin S, Costley D, Warren A. Employment activities and experiences of adults with high-functioning autism and Asperger’s disorder. J Autism Dev Disord. 2014;44(10):2440–9. https://proxy.library.upenn.edu:2101/10.1007/s10803-014-2112-z

    Article  Google Scholar 

  39. 39.

    Schall C, Wehman P, McDonough JL. Transition from school to work for students with autism spectrum disorders: understanding the process and achieving better outcomes. Pediatr Clin N Am. 2012;59(1):189–202.

    Article  Google Scholar 

  40. 40.

    Burgess S, Cimera RE. Employment outcomes of transition-aged adults with autism spectrum disorders: a state of the states report. Am J Intellect Dev Disabil. 2014;119(1):64–83. https://doi.org/10.1352/1944-7558-119.1.64.

    Article  PubMed  Google Scholar 

  41. 41.

    Nye-Lengerman K. Vocational rehabilitation service usage and outcome for individuals with autism spectrum disorder. Res Autism Spectr Disord. 2017;41–42:39–50. https://doi.org/10.1016/j.rasd.2017.08.003.

    Article  Google Scholar 

  42. 42.

    Wehman P, Schall CM, McDonough J, Graham C, Brooke V, Riehle JE, et al. Effects of an employer-based intervention on employment outcomes for youth with significant support needs due to autism. Autism. 2017;21(3):276–90. https://doi.org/10.1177/1362361316635826.

    Article  Google Scholar 

  43. 43.

    Wehman P, Brooke V, Brooke AM, Ham W, Schall C, McDonough J, et al. Employment for adults with autism spectrum disorder: a retrospective review of a customized employment approach. Res Dev Disabil. 2016;53–54:61–72. https://proxy.library.upenn.edu:2101/10.1016/j.ridd.2016.01.015

    Article  Google Scholar 

  44. 44.

    Frankel F, Laugeson EA. Social skills for teenagers with developmental and autism spectrum disorders: the PEERS treatment manual. Routledge; 2011.

  45. 45.

    Pallathra AA, Day-Watkins J, Calkins ME, Maddox B, Miller J, Parish-Morris J, Herrington J, Kangovi S, Tomlinson R, Creed T, Kerns C, Bilker W, Handy F, Connell J, Dichter G, Mandell D, Schultz RT, Brodkin ES. TUNE In, a novel cognitive behavioral treatment program to improve social functioning in adults with ASD: pilot study results. In: Paper presented at the meeting of International Society for Autism Research, San Francisco, CA. 2017. https://www.centerforautismresearch.org/tune-novel-cognitive-behavioral-treatment-programimprove-social-functioning-adults-asd-pilot-study.

  46. 46.

    Fuller M. (Producer, Director). Autism in Love [Motion picture]. USA: Public Broadcasting Station; 2016.

  47. 47.

    Campbell D. Understanding if people really mean what they say [Online forum comment]. 2017. Retrieved from https://www.autismforums.com/threads/understanding-if-people-really-mean-what-they-say.25790/

  48. 48.

    Ritvo E, Brothers AM, Freeman BJ, Pingree C. Eleven possibly autistic parents. J Autism Dev Disord. 1988;18(1):139–43.

    CAS  Article  Google Scholar 

  49. 49.

    Mazurek MO. Loneliness, friendship, and well-being in adults with autism spectrum disorders. Autism. 2014;18(3):223–32. https://doi.org/10.1177/1362361312474121.

    Article  PubMed  Google Scholar 

  50. 50.

    Fernandes LC, Gillberg CI, Cederlund M, Hagberg B, Gillberg C, Billstedt E. Aspects of sexuality in adolescents and adults diagnosed with autism spectrum disorders in childhood. J Autism Dev Disord. 2016;46(9):3155–65. https://proxy.library.upenn.edu:2101/10.1007/s10803-016-2855-9

    Article  Google Scholar 

  51. 51.

    Turner D, Briken P, Schottle D. Autism-spectrum disorders in adolescence and adulthood: focus on sexuality. Curr Opin Psychiatr. 2017;30(6):409–16. https://doi.org/10.1097/YCO.0000000000000369.

    Article  Google Scholar 

  52. 52.

    Hannah LA, Stagg SD. Experiences of sex education and sexual awareness in young adults with autism spectrum disorder. J Autism Dev Disord. 2016;46:3678–87. https://doi.org/10.1007/s10803-016-2906-2.

    Article  PubMed  Google Scholar 

  53. 53.

    Holmes LG, Himle MB. Brief report: parent-child sexuality communication and autism spectrum disorders. J Autism Dev Disord. 2014;44(11):2964–70. https://doi.org/10.1007/s10803-014-2146-2.

    Article  PubMed  Google Scholar 

  54. 54.

    Post M, Haymes L, Storey K, Loughrey T, Campbell C. Understanding stalking behaviors by individuals with autism spectrum disorders and recommended prevention strategies for school settings. J Autism Dev Disord. 2014;44(11):2698–706. https://doi.org/10.1007/s10803-012-1712-8.

    Article  PubMed  Google Scholar 

  55. 55.

    Visser K, Greaves-Lord K, Tick NT, Verhuost FC, Maras A, van der Vegt EJM. A randomized controlled trial to examine the effects of the tackling teenage psychosexual training program for adolescents with autism spectrum disorder. J Child Psychol Psychiatry. 2017;58(7):840–50. https://doi.org/10.1111/jcpp.12709.

    Article  PubMed  Google Scholar 

  56. 56.

    Anderson KA, Shattuck PT, Cooper BP, Roux AM, Wagner M. Prevalence and correlates of postsecondary residential status among young adults with an autism spectrum disorder. Autism. 2014;18(5):562. https://doi.org/10.1177/1362361313481860.

    Article  PubMed  Google Scholar 

  57. 57.

    Hewitt A, Stancliffe R, Hall-Lande J, Nord D, Pettingell S, Hamre K, et al. Characteristics of adults with autism spectrum disorder who use residential services and supports through adult developmental disability services in the United States. Res Autism Spectr Disord. 2017;34:1–9. https://doi.org/10.1016/j.rasd.2016.11.007.

    Article  Google Scholar 

  58. 58.

    Cheak-Zamora NC, Teti M, Maurer-Batjer A, Halloran D. Snapshots of growing up: youth with autism explore adulthood through photovoice. J Dev Behav Pediatr. 2016;37(6):433–41. https://doi.org/10.1097/DBP.0000000000000313.

    Article  PubMed  Google Scholar 

  59. 59.

    Giarelli E, Ruttenberg J, Segal A. Bridges and barriers to successful transitioning as perceived by adolescents and young adults with Asperger syndrome. J Pediatr Nurs. 2013;28(6):563–74. https://doi.org/10.1016/j.pedn.2012.12.010.

    Article  PubMed  Google Scholar 

  60. 60.

    Administration of Community Living (ACL). ACL Strategic Plan 2013–2018. 2013: Retrieved from https://www.acl.gov/sites/default/files/about-acl/2016-09/ACL_Strategic_Plan.pdf

  61. 61.

    L&M Policy Research, LLC. Autism spectrum disorders (ASD): state of the states of services and supports for people with ASD. 2014. Retrieved from https://www.medicaid.gov/medicaid/ltss/downloads/asd-state-of-the-states-report.pdf

  62. 62.

    Anderson C, Lupfer A, Shattuck PT. Barriers to receipt of services for young adults with autism. Pediatrics. 2018, 141(Supplement 4):S300–5. https://doi.org/10.1542/peds.2016-4300G.

    Article  Google Scholar 

  63. 63.

    Social Security Administration (SSA). Benefits for children with disabilities. 2018. Retrieved from https://www.ssa.gov/pubs/EN-05-10026.pdf

  64. 64.

    Social Security Administration (SSA). (n.d.a). Supplemental Security Income (SSI) eligibility requirements. Retrieved from https://www.ssa.gov/ssi/text-eligibility-ussi.htm

  65. 65.

    Social Security Administration (SSA). (n.d.b). Policy for Section 301 payments to individuals participating in a vocational rehabilitation or similar program. Retrieved from https://secure.ssa.gov/poms.nsf/lnx/0414505010

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Correspondence to Amanda E. Bennett.

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Conflict of Interest

Amanda E. Bennett reports grants from Autism Speaks, Neurim Pharmaceuticals, Stemina Biomarker Discovery, and Roche Pharmaceuticals; her spouse is an employee of Pfizer, serving as director of endocrine clinical research. Judith S. Miller and Natalie Stollon each declare no potential conflicts of interest. Raghuram Prasad reports grants from Aevi and PCORI. Nathan J. Blum reports royalties for the Nelson Textbook of Pediatrics, published by Elsevier.

Human and Animal Rights and Informed Consent

This article does not contain any studies with human or animal subjects performed by any of the authors.

Additional information

We use both person-first language (e.g., adults with ASD) and identity-first language (autistic adults) to represent terminology preferences shared within the community of families and individuals with ASD [https://ncdj.org/2016/01/journalists-should-learn-to-carefully-traverse-a-variety-of-disability-terminology/].

This article is part of the Topical Collection on Child and Adolescent Disorders

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Bennett, A.E., Miller, J.S., Stollon, N. et al. Autism Spectrum Disorder and Transition-Aged Youth. Curr Psychiatry Rep 20, 103 (2018). https://doi.org/10.1007/s11920-018-0967-y

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Keywords

  • Autism
  • Adult
  • Transition
  • Adolescent