The transition from high school to adulthood is difficult for youth with autism spectrum disorder and their families. Recognizing these challenges, there is a small but emerging body of literature testing interventions to improve the transition process. But there are many challenges in performing intervention research that have yet to be fully addressed. We discuss issues that should be considered when conducting interventions with individuals with autism spectrum disorder to improve the transition to adulthood, drawing from our study of a parent training to facilitate access to adult services during the transition years. Issues covered include (1) timing (when is an intervention most effective?), (2) mode of delivery (what is the best way to present information?), (3) outcomes (how can intervention outcomes be accurately measured?), (4) target population (who is the intervention designed to help?), and (5) level of intervention (who should the intervention target?). Our answers, though preliminary, show the need to be flexible, to adopt a trial-and-error stance, and to listen to the needs—both explicit and implicit—of youth with autism spectrum disorder and their parents as they navigate the difficult transition from adolescence to adulthood.
Accreditation Council on Service for People with Disabilities (1995) Outcome Measures for Early Childhood Intervention Services. Landover, MD: The Accreditation Council.
2.
AgranMCainHMCavinMD (2002) Enhancing the involvement of rehabilitation counselors in the transition process. Career Development for Exceptional Individuals25: 141–155.
3.
AndersonKBalandinSStancliffeRJet al. (2014) Parents’ perspectives on tele-AAC support for families with a new speech generating device: results from an Australian pilot study. Perspectives on Telepractice5: 52–60.
4.
BiancoMGarrison-WadeDFTobinRet al. (2009) Parents’ perceptions of postschool years for young adults with developmental disabilities. Intellectual and Developmental Disabilities47: 186–196.
5.
BraddockDHempRRizzoloMCet al. (2014) The State of the States in Developmental Disabilities, 2014: Emerging from the Great Recession. Washington, DC: American Association on Intellectual and Developmental Disabilities.
6.
BurkeMMMeadan-KaplanskyHPattonKAet al. (2017) Advocacy for children with social-communication needs: perspectives from parents and school professionals. Journal of Special Education. Epub ahead of print 28 June. DOI: 10.1177/0022466917716898.
7.
BurkeMMPattonKATaylorJL (2016) Family support: a literature review of families of adolescents with disabilities. Journal of Family Social Work19: 252–285.
8.
CaldwellJHellerT (2007) Longitudinal outcomes of a consumer-directed program supporting adults with developmental disabilities and their families. American Association on Intellectual and Developmental Disabilities45: 161–173.
9.
CarterLMMuirLMcLeanD (2011) Narrative as a means of understanding the multidimensional benefits of telehealth: an exploration of telehealth stories. Canadian Journal of University Continuing Education37: 1–13.
10.
CasaleEGStainbrookJAStaubitzJEet al. (2017) The promise of telepractice to address functional and behavioral needs of persons with autism spectrum disorder. International Review of Research in Developmental Disabilities53: 235–295.
11.
CasonJBehlDRingwaltS (2012) Overview of states’ use of telehealth for the delivery of early intervention (IDEA Part C) services. International Journal of Telerehabilitation42: 39–46.
12.
EversonJMZhangDGuilloryJD (2001) A statewide investigation of individualized transition plans in Louisiana. Career Development Exceptional Individuals24: 37–49.
13.
FileTRyanC (2013) Computer and internet use in the United States: 2013. American Community Survey Reports, ACS-28, 13 November 2014. Washington, DC: US Census Bureau.
14.
FongLWilgoshLSobseyD (1993) The experience of parenting an adolescent with autism. International Journal of Disability, Development and Education40: 105–113.
15.
FoxxRM (2008) Applied behavior analysis treatment of autism: the state of the art. Child & Adolescent Psychiatric Clinics of North America17: 821–834.
16.
Hanley-MaxwellCWhitney-ThomasJPogoloffS (1995) The second shock: a qualitative study of parents’ perspectives and needs during their child’s transition from school to adult life. Journal of the Association for Persons with Severe Disabilities20: 3–15.
17.
HellerTCaldwellJ (2006) Supporting aging caregivers and adults with developmental disabilities in future planning. American Association on Intellectual and Developmental Disabilities44: 189–202.
18.
HellerTMillerABHsiehK (1999) Impact of a consumer-directed family support program on adults with developmental disabilities and their family caregivers. Family Relations48: 419–427.
19.
Individuals with Disabilities Education Improvement Act of 2004, Pub. L. No. 108-446, 20 U.S.C. 1400 et seq.
20.
KimKTurnbullAP (2004) Transition to adulthood for students with severe intellectual disabilities: shifting toward person-family interdependent planning. Research and Practice for Persons with Severe Disabilities29: 53–57.
21.
LaugesonEAGantmanAKappSKet al. (2015) A randomized controlled trial to improve social skills in young adults with autism spectrum disorder: the UCLA PEERS program. Journal of Autism and Developmental Disorders45: 3978–3989.
22.
MachalicekWO’ReillyMFBeretvasBet al. (2008) A review of school-based instructional interventions for students with autism spectrum disorders. Research in Autism Spectrum Disorders2: 395–416.
23.
MandicCGRuddRHehirTet al. (2012) Readability of special education procedural safeguards. Journal of Special Education45: 195–203.
24.
MartinJEVan DyckeJLChristensenWRet al. (2006) Increasing student participation in IEP meetings: establishing the self-directed IEP as an evidence-based practice. Exceptional Children72: 299–316.
25.
MorganLLeatzowAClarkSet al. (2014) Interview skills for adults with autism spectrum disorder: a pilot randomized controlled trial. Journal of Autism and Developmental Disorders44: 2290–2300.
26.
O’BrienJLovettH (1992) Finding a Way toward Everyday Lives: The Contribution of Person Centered Planning. Harrisburg, PA: Pennsylvania Office of Mental Retardation.
27.
Research and Training Center on Community Living (2013) Residential Services for Persons with Intellectual or Developmental Disabilities: Status and Trends through 2011. Available at: https://rtc3.umn.edu/risp/docs/risp2011.pdf
28.
ShadishWRCookTDCampbellDT (2002) Experimental and Quasi-experimental Designs for General Causal Inference. Boston, MA: Houghton-Mifflin.
29.
ShattuckPTRouxAMHudsonLEet al. (2012) Services for adults with an autism spectrum disorder. The Canadian Journal of Psychiatry57: 284–291.
30.
ShillingVMorrisCThompson-CoonJet al. (2013) Peer support for parents of children with chronic disabling conditions: a systematic review of quantitative and qualitative studies. Developmental Medicine & Child Neurology55: 602–609.
31.
SilversteinR (1999) Emerging disability policy framework: a guidepost for analyzing public policy. Iowa Law Review85: 1691–1806.
32.
SmedleyBDSymeSL (2000) Promoting Health: Intervention Strategies from Social and Behavioral Research. Washington, DC: National Academies Press.
33.
SmithLEHongJSeltzerMMet al. (2010) Daily experiences among mothers of adolescents and adults with autism spectrum disorder. Journal of Autism and Developmental Disorders40: 167–178.
34.
SmithMJGingerEWrightKet al. (2014) Virtual reality interview training in adults with autism spectrum disorder. Journal of Autism and Developmental Disorders44: 2450–2463.
35.
SolomonMPistrangNBarkerC (2001) The benefits of mutual support groups for parents of children with disabilities. American Journal of Community Psychology29: 113–132.
TaylorJLAdamsREBishopSL (2017) Social participation and its relation to internalizing symptoms among youth with autism spectrum disorder as they transition from high school. Autism Research10: 663–672.
38.
TaylorJLDaWaltLS (2017) Brief report: postsecondary work and educational disruptions for youth on the autism spectrum. Journal of Autism and Developmental Disorders47: 4025–4031.
39.
TaylorJLSeltzerMM (2010) Changes in the autism behavioral phenotype during the transition to adulthood. Journal of Autism and Developmental Disorders40: 1431–1446.
40.
TaylorJLDoveDVeenstra-VanderWeeleJet al. (2012) Interventions for adolescents and young adults with autism spectrum disorders. Comparative effectiveness Review no. 65 (Prepared by the Vanderbilt University Evidence-based Practice Center under Contract No. 290-2007-10065-I). AHRQ Publication No. 12-EHC063-EF. Rockville, MD: Agency for Healthcare Research and Quality. Available at: www.effectivehealthcare.ahrq.gov/reports/final.cfm
41.
TaylorJLHodappRMBurkeMMet al. (2017) Training parents of youth with autism spectrum disorder to advocate for adult disability services: results from a pilot randomized controlled trial. Journal of Autism and Developmental Disorders47: 846–857.
42.
TillmanJDFordL (2001) Analysis of transition services of individualized education programs for high school students with special needs. Paper presented at the annual meeting of the National Association of School Psychologists, Washington, DC, 1 April.
43.
TimmonsJCWhitney-ThomasJMcIntyreJPet al. (2004) Managing service delivery systems and the role of parents during their children’s transitions. Journal of Rehabilitation70: 19–26.
Supplementary Material
Please find the following supplemental material available below.
For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.
For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.
