Development, Feasibility, and Acceptability of a Nationally Relevant Parent Training to Improve Service Access During the Transition to Adulthood for Youth with ASD

Julie Lounds Taylor, Florencia Pezzimenti, Meghan M Burke, Leann Smith DaWalt, Chung Eun Lee, Carol Rabideau, Julie Lounds Taylor, Florencia Pezzimenti, Meghan M Burke, Leann Smith DaWalt, Chung Eun Lee, Carol Rabideau

Abstract

Many youth with autism spectrum disorder (ASD) face challenges accessing needed services as they transition to adulthood. The present study describes the development, feasibility and acceptability of a new intervention designed to teach parents of transition-aged youth with ASD about the adult service system and the most effective ways to access services and supports. As part of a randomized-controlled trial, the intervention-named ASSIST-was delivered to 91 participants in three states in the U.S. Results suggested that ASSIST is feasible and acceptable to participants. Though intended to be an in-person group-based program, due to COVID-19 restrictions ASSIST was primarily delivered online. Results and discussion explore the trade-offs and implications of these different treatment delivery modalities in relation to ASSIST.

Keywords: Autism spectrum disorder; Families; Intervention; Services; Transition to adulthood.

© 2021. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.

Figures

Fig. 1
Fig. 1
Example agenda and treatment fidelity form from the ASSIST session, “Housing and Technology”
Fig. 2
Fig. 2
Percent of sessions attended by participants. Attendance includes both attending sessions live or watching the recordings of the sessions afterwards
Fig. 3
Fig. 3
Percentage of participants who endorsed each circumstance that made attendance difficult (out of n = 62)
Fig. 4
Fig. 4
Percentage of those who took ASSIST both in-person and online, who endorsed each response (n = 20)

References

    1. Ameis SH, Lai M-C, Mulsant BH, Szatmari P. Coping, fostering resilience, and driving care innovation for autistic people and their families during the COVID-19 pandemic and beyond. Molecular Autism. 2020;11(1):61. doi: 10.1186/s13229-020-00365-y.
    1. Ballaban-Gil K, Rapin, L., Tuchman, T., & Shinnar, S Longitudinal examination of the behavioral, language, and social changes in a population of adolescent and young adults with autistic disorder. Pediatric Neurology. 1996;15(3):217–223. doi: 10.1016/S0887-8994(96)00219-6.
    1. Bauminger N, Kasari C. Loneliness and friendship in high-functioning children with autism. Child Development. 2000;71(2):447–456. doi: 10.1111/1467-8624.00156.
    1. Billstedt E, Gillberg C, Gillberg C. Autism after adolescence: Population-based 13- to 22-year follow-up study of 120 individuals with autism diagnosed in childhood. Journal of Autism and Developmental Disorders. 2005;35(3):351–360. doi: 10.1007/s10803-005-3302-5.
    1. Buescher AS, Cidav Z, Knapp M, Mandell DS. Costs of autism spectrum disorders in the United Kingdom and the United States. JAMA Pediatrics. 2014;168(8):721–728. doi: 10.1001/jamapediatrics.2014.210.
    1. The Case for Inclusion 2020: Key Findings Report. (2020).
    1. The Case For Inclusion Report: 2019. (2019).
    1. Eaves LC, Ho HH. Young adult outcome of autism spectrum disorders. Journal of Autism and Developmental Disorders. 2008;38(4):739–747. doi: 10.1007/s10803-007-0441-x.
    1. Eilenberg JS, Paff M, Harrison AJ, Long KA. Disparities based on race, ethnicity, and socioeconomic status over the transition to adulthood among adolescents and young adults on the autism spectrum: A systematic review. Current Psychiatry Reports. 2019;21(5):32. doi: 10.1007/s11920-019-1016-1.
    1. Fixsen D, Blase K, Metz A, Van Dyke M. Statewide implementation of evidence-based programs. Exceptional Children. 2013;79(3):213–230. doi: 10.1177/001440291307900206.
    1. Fixsen, D., Naoom, S., Blase, K., Friedman, R., Wallace, F. (2005). Implementation research: A synthesis of the literature. University of South Florida, Louis de la Parte Florida Mental Health Institute, National Implementation Research Network (FMHI Publication #231).
    1. Hacker J, vom Brocke J, Handali J, Otto M, Schneider J. Virtually in this together—How web-conferencing systems enabled a new virtual togetherness during the COVID-19 crisis. European Journal of Information Systems. 2020;29(5):563–584. doi: 10.1080/0960085X.2020.1814680.
    1. Howlin P, Goode S, Hutton J, Rutter M. Adult outcome for children with autism. Journal of Child Psychology and Psychiatry. 2004;45(2):212–229. doi: 10.1111/j.1469-7610.2004.00215.x.
    1. Jones DR, Mandell DS. To address racial disparities in autism research, we must think globally, act locally. Autism. 2020;24(7):1587–1589. doi: 10.1177/1362361320948313.
    1. Lyons J, Cappadocia MC, Weiss JA. Brief report:: Social characteristics of students with autism spectrum disorders across classroom settings [Article] Journal on Developmental Disabilities. 2011;17(1):77–82.
    1. Manning J, Billian J, Matson J, Allen C, Soares N. Perceptions of families of individuals with autism spectrum disorder during the COVID-19 crisis. Journal of Autism and Developmental Disorders. 2020 doi: 10.1007/s10803-020-04760-5.
    1. Nguyen, M. H., Gruber, J., Fuchs, J., Marler, W., Hunsaker, A., & Hargittai, E. (2020). Changes in digital communication during the COVID-19 global pandemic: Implications for digital inequality and future research. Social Media + Society, 6(3), 2056305120948255. 10.1177/2056305120948255
    1. Petrina N, Carter M, Stephenson J. The nature of friendship in children with autism spectrum disorders: A systematic review. Research in Autism Spectrum Disorders. 2014;8(2):111–126. doi: 10.1016/j.rasd.2013.10.016.
    1. Residential Information Systems Project. (2020). How many people with intellectual or developmental disabilities live in the United States? https.//
    1. Rutter, M., Bailey, A., & Lord, C. (2003). SCQ: Social communication questionnaire. Westerna Psychological Services.
    1. 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(6):1042–1049. doi: 10.1542/peds.2011-2864.
    1. Shattuck PT, Wagner M, Narendorf S, Sterzing P, Hensley M. Post-high school service use among young adults with an autism spectrum disorder. Archives of Pediatrics & Adolescent Medicine. 2011;165(2):141–146. doi: 10.1001/archpediatrics.2010.279.
    1. Taylor JL, DaWalt LS. Brief report: Post-secondary work and educational disruptions for youth on the autism spectrum. Journal of Autism and Developmental Disorders. 2017;47(12):4025–4031. doi: 10.1007/s10803-017-3305-z.
    1. Taylor JL, Henninger NA, Mailick MR. Longitudinal patterns of employment and postsecondary education for adults with autism and average-range IQ. Autism. 2015;19(7):785–793. doi: 10.1177/1362361315585643.
    1. Taylor JL, Hodapp RM. Doing nothing: Adults with disabilities with no daily activities and their siblings. Ajidd-American Journal on Intellectual and Developmental Disabilities. 2012;117(1):67–79. doi: 10.1352/1944-7558-117.1.67.
    1. Taylor JL, Hodapp RM, Burke MM, Waitz-Kudla SN, Rabideau C. 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 Disorders. 2017;47(3):846–857. doi: 10.1007/s10803-016-2994-z.
    1. Taylor, J. L., Hodapp, R. M., Burke, M. M., Waitz-Kudla, S. N., & Rabideau, C. (2017b). Effects of a parent-training intervention on service access and employment for youth with ASD. International Meeting for Autism Research, San Francisco, CA.
    1. Taylor JL, Mailick MR. A longitudinal examination of 10-year change in vocational and educational activities for adults with autism spectrum disorders. Developmental Psychology. 2014;50(3):699–708. doi: 10.1037/a0034297.
    1. Taylor JL, Seltzer MM. Changes in the mother-child relationship during the transition to adulthood for youth with autism spectrum disorders. Journal of Autism and Developmental Disorders. 2011;41(10):1397–1410. doi: 10.1007/s10803-010-1166-9.
    1. Taylor JL, Seltzer MM. Employment and post-secondary education activities for young adults with autism spectrum disorders during the transition to adulthood. Journal of Autism and Developmental Disorders. 2011;41(5):566–574. doi: 10.1007/s10803-010-1070-3.
    1. Taylor JL, Seltzer MM. Developing a vocational index for adults with autism spectrum disorders. Journal of Autism and Developmental Disorders. 2012;42(12):2669–2679. doi: 10.1007/s10803-012-1524-x.
    1. West EA, Travers JC, Kemper TD, Liberty LM, Cote DL, McCollow MM, Stansberry Brusnahan LL. Racial and ethnic diversity of participants in research supporting evidence-based practices for learners with autism spectrum disorder. The Journal of Special Education. 2016;50(3):151–163. doi: 10.1177/0022466916632495.
    1. White LC, Law JK, Daniels AM, Toroney J, Vernoia B, Xiao S, Feliciano P, Chung WK, The SC. Brief report: Impact of COVID-19 on individuals with ASD and their caregivers: A perspective from the SPARK Cohort. Journal of Autism and Developmental Disorders. 2021 doi: 10.1007/s10803-020-04816-6.

Source: PubMed

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