Abstract
Self-determination refers to an individual's capacity and opportunities to act as a causal agent in their own lives to make choices, decisions, and set goals. The current study examined self- and parent-reports of the AIR Self-Determination Scale in transition-aged autistic youth (Based on stakeholder preferences, we use identity-first(autistic) or neutral language (on the autism spectrum) (Bottema-Beutel in JAMA 3:18–29, 2020)). Autistic youth completed depression and executive function measures, and parents rated their child's social-communication and executive function difficulties. Despite differences between youth and parent reports, both youth and their parents reported lower self-determination skills (capacity) than opportunities to practice self-determined behaviors. Both depression and executive function skills were related to self-determination capacity, highlighting potential intervention targets for transition-aged youth to facilitate increased self-determination and potentially improved adult outcomes.
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References
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
Anderson, C., & Butt, C. (2018). Young adults on the autism spectrum: The struggle for appropriate services. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-018-3673-z
Baio, J., Wiggins, L., Christensen, D. L., Maenner, M. J., Daniels, J., Warren, Z., Kurzius-Spencer, M., Zahorodny, W., Robinson, C., White, T., Durkin, M. S., Imm, P., Nikolaou, L., Yeargin-Allsopp, M., Lee, L.-C., Harrington, R., Lopez, M., Fitzgerald, R. T., & Dowling, N. F. (2018). Prevalence of autism spectrum disorder among children aged 8 years—Autism and developmental disabilities monitoring network, 11 sites, United States, 2014. MMWR Surveillance Summaries. https://doi.org/10.15585/mmwr.ss6706a1
Bottema-Beutel, K., Kapp, S. K., Lester, J. N., Sasson, N. J., & Hand, B. N. (2020). Avoiding ableist language: Suggestions for autism researchers. Autism in Adulthood. https://doi.org/10.1089/aut.2020.0014
Brown, T. A. (2006). Confirmatory factor analysis for applied research. The Guilford Press.
Buescher, A. V. S., Cidav, Z., Knapp, M., & Mandell, D. S. (2014). Costs of autism spectrum disorders in the United Kingdom and the United States. JAMA Pediatrics. https://doi.org/10.1001/jamapediatrics.2014.210
Capriola-Hall, N. N., Brewe, A. M., Golt, J., & White, S. W. (2021). Anxiety and depression reduction as distal outcomes of a college transition readiness program for adults with autism. Journal of Autism and Developmental Disorders, 51, 298–306. https://doi.org/10.1007/s10803-020-04549-6
Cederlund, M., Hagberg, B., & Gillberg, C. (2010). Asperger syndrome in adolescent and young adult males. Interview, self - and parent assessment of social, emotional, and cognitive problems. Research in Developmental Disabilities, 31(2), 287–298. https://doi.org/10.1016/j.ridd.2009.09.006
Chan, W., Smith, L. E., Hong, J., Greenberg, J. S., Lounds Taylor, J., & Mailick, M. R. (2017). Factors associated with sustained community employment among adults with autism and co-occurring intellectual disability. Autism. https://doi.org/10.1177/1362361317703760
Chao, P.-C. (2018). Using self-determination of senior college students with disabilities to predict their quality of life one year after graduation. European Journal of Educational Research, 7(1), 1–8. https://doi.org/10.12973/eu-jer.7.1.1
Cheak-Zamora, N. C., Maurer-Batjer, A., Malow, B. A., & Coleman, A. (2020). Self-determination in young adults with autism spectrum disorder. Autism, 24(3), 605–616. https://doi.org/10.1177/1362361319877329
Chou, Y. C., Wehmeyer, M. L., Palmer, S. B., & Lee, J. (2017). Comparisons of self-determination among students with autism, intellectual disability, and learning disabilities: A multivariate analysis. Focus on Autism and Other Developmental Disabilities, 32(2), 124–134. https://doi.org/10.1177/1088357615625059
Christensen, D. L., Baio, J., Braun, K. V. N., Bilder, D., Charles, J., Constantino, J. N., Daniels, J., Durkin, M. S., Fitzgerald, R. T., Kurzius-Spencer, M., Lee, L.-C., Pettygrove, S., Robinson, C., Schulz, E., Wells, C., Wingate, M. S., Zahorodny, W., & Yeargin-Allsopp, M. (2016). Prevalence and characteristics of autism spectrum disorder among children aged 8 years—autism and developmental disabilities monitoring network, 11 sites, United States, 2012. Morbidity and Mortality Weekly Report Surveillance Summaries (Washington, D.C.: 2002), 65(3), 1–23. https://doi.org/10.15585/mmwr.ss6503a1
Constantino, J. N. (2012). Social Responsiveness Scale (2nd ed.). Western Psychological Services.
De Los Reyes, A., Augenstein, T. M., Wang, M., Thomas, S. A., Drabick, D. A. G., Burgers, D. E., & Rabinowitz, J. (2015). The validity of the multi-informant approach to assessing child and adolescent mental health. Psychological Bulletin, 141(4), 858–900. https://doi.org/10.1037/a0038498
Eaton, W. W., Muntaner, C., Smith, C., Tien, A., & Ybarra, M. (2004). Center for Epidemiologic Studies Depression Scale: Review and revision (CESD and CESD-R). In M. E. Maruish (Ed.), The Use of Psychological Testing for Treatment Planning and Outcomes Assessment (3rd ed., pp. 363–377). Lawrence Erlbaum.
Eaves, L. C., & Ho, H. H. (2008). Young adult outcome of autism spectrum disorders. Journal of Autism and Developmental Disorders, 38(4), 739–747. https://doi.org/10.1007/s10803-007-0441-x
Enders, C. K. (2003). Using the expectation maximization algorithm to estimate coefficient alpha for scales with item-level missing data. Psychological Methods, 8(3), 322–337. https://doi.org/10.1037/1082-989X.8.3.322
Enders, C. K. (2010). Applied missing data analysis. Guilford Press.
Gardiner, E., & Iarocci, G. (2018). Everyday executive function predicts adaptive and internalizing behavior among children with and without autism spectrum disorder. Autism Research, 11(2), 284–295. https://doi.org/10.1002/aur.1877
Gaumer Erickson, A. S., Noonan, P. M., Zheng, C., & Brussow, J. A. (2015). The relationship between self-determination and academic achievement for adolescents with intellectual disabilities. Research in Developmental Disabilities, 36, 45–54. https://doi.org/10.1016/j.ridd.2014.09.008
Gillespie-Lynch, K., Kapp, S. K., Brooks, P. J., Pickens, J., & Schwartzman, B. (2017). Whose expertise is it? Evidence for autistic adults as critical autism experts. Frontiers in Psychology. https://doi.org/10.3389/fpsyg.2017.00438
Gioia, G. A., Isquith, P. K., Guy, S. C., & Kenworthy, L. (2015). Baehavior Rating Inventory of Executive Function, Second Edition (BRIEF 2).
Gotham, K., Marvin, A. R., Taylor, J. L., Warren, Z., Anderson, C. M., Law, P. A., Law, J. K., & Lipkin, P. H. (2015). Characterizing the daily life, needs, and priorities of adults with autism spectrum disorder from Interactive Autism Network data. Autism, 19(7), 794–804. https://doi.org/10.1177/1362361315583818
Graham, J. W. (2009). Missing data analysis: Making it work in the real world. Annual Reviews of Psychology, 60, 549–576.
Granader, Y., Wallace, G., Hardy, K., Yerys, B., Lawson, R., Rosenthal, M., Wills, M., Dixon, E., Pandey, J., Penna, R., Schultz, R., & Kenworthy, L. (2014). Characterizing the factor structure of parent reported executive function in autism spectrum disorders: The impact of cognitive inflexibility. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-014-2169-8
Henninger, N. A., & Taylor, J. L. (2012). Outcomes in adults with autism spectrum disorders: A historical perspective. Autism, 12(1971), 1–14. https://doi.org/10.1177/1362361312441266
Hill, E. L. (2004). Executive dysfunction in autism. Trends in Cognitive Sciences, 8(1), 26–32. https://doi.org/10.1016/j.tics.2003.11.003
Hill, E., Berthoz, S., & Frith, U. (2004). Brief report: Cognitive processing of own emotions in individuals with autistic spectrum disorder and in their relatives. Journal of Autism and Developmental Disorders, 34(2), 229–235. https://doi.org/10.1023/B:JADD.0000022613.41399.14
Hollocks, M. J., Lerh, J. W., Magiati, I., Meiser-Stedman, R., & Brugha, T. S. (2019). Anxiety and depression in adults with autism spectrum disorder: A systematic review and meta-analysis. Psychological Medicine, 49(4), 559–572. https://doi.org/10.1017/S0033291718002283
Howlin, P. (2003). Outcome in high-functioning adults with autism with and without early language delays: Implications for the differentiation between autism and asperger syndrome. Journal of Autism and Developmental Disorders, 33(1), 3–13. https://doi.org/10.1023/A:1022270118899
Howlin, P., Goode, S., Hutton, J., & Rutter, M. (2004). Adult outcome for children with autism. Journal of Child Psychology and Psychiatry, 45(2), 212–229. https://doi.org/10.1111/j.1469-7610.2004.00215.x
John, T., Dawson, G., & Estes, A. (2018). Brief report: Executive function as a predictor of academic achievement in school-aged children with ASD. Journal of Autism and Developmental Disorders, 48(1), 276–283. https://doi.org/10.1007/s10803-017-3296-9
Kenworthy, L. E., Black, D. O., Wallace, G. L., Ahluvalia, T., Wagner, A. E., & Sirian, L. M. (2005). Disorganization: The forgotten executive dysfunction in high-functioning autism (HFA) spectrum disorders. Developmental Neuropsychology, 28(3), 809–827. https://doi.org/10.1207/s15326942dn2803_4
Kenworthy, L., Yerys, B. E., Anthony, L. G., & Wallace, G. L. (2008). Understanding executive control in autism spectrum disorders in the lab and in the real world. Neuropsychology Review, 18(4), 320–338. https://doi.org/10.1007/s11065-008-9077-7
Kim, S. Y. (2019). The experiences of adults with autism spectrum disorder: Self-determination and quality of life. Research in Autism Spectrum Disorders, 60, 1–15. https://doi.org/10.1016/j.rasd.2018.12.002
Kraper, C. K., Kenworthy, L., Popal, H., Martin, A., & Wallace, G. L. (2017). The Gap Between Adaptive Behavior and Intelligence in Autism Persists into Young Adulthood and is Linked to Psychiatric Co-morbidities. Journal of Autism and Developmental Disorders, 47(10), 3007–3017. https://doi.org/10.1007/s10803-017-3213-2
Lai, C. L. E., Lau, Z., Lui, S. S. Y., Lok, E., Tam, V., Chan, Q., Cheng, K. M., Lam, S. M., & Cheung, E. F. C. (2017). Meta-analysis of neuropsychological measures of executive functioning in children and adolescents with high-functioning autism spectrum disorder. Autism Research, 10(5), 911–939. https://doi.org/10.1002/aur.1723
Landry, O., & Al-Taie, S. (2016). A Meta-analysis of the Wisconsin Card Sort Task in Autism. Journal of Autism and Developmental Disorders, 46(4), 1220–1235. https://doi.org/10.1007/s10803-015-2659-3
Laxman, D. J., Taylor, J. L., DaWalt, L. S., Greenberg, J. S., & Mailick, M. R. (2019). Loss in services precedes high school exit for teens with autism spectrum disorder: A longitudinal study. Autism Research, 12(6), 911–921. https://doi.org/10.1002/aur.2113
Little, R. J. A., & Rubin, D. B. (2020). Statistical Analysis with Missing Data. Wiley.
Maenner, M. J., Shaw, K. A., Baio, J., Washington, A., Patrick, M., DiRienzo, M., Christensen, D. L., Wiggins, L. D., Pettygrove, S., Andrews, J. G., Lopez, M., Hudson, A., Baroud, T., Schwenk, Y., White, T., Rosenberg, C. R., Lee, L. C., Harrington, R. A., Huston, M., et al. (2020). Prevalence of autism spectrum disorder among children aged 8 years - autism and developmental disabilities monitoring network, 11 sites, United States, 2016. Morbidity and Mortality Weekly Report: Surveillance Summaries, 69(4), 1–12. https://doi.org/10.15585/mmwr.ss6904a1
Matthews, N. L., Christenson, K., Kiefer, S., & Smith, C. J. (2021). A mixed-methods examination of the gap between intelligence and adaptive functioning in autistic young adults without intellectual disability. Autism. https://doi.org/10.1177/13623613211018334
Mazefsky, C. A., Kao, J., & Oswald, D. P. (2011). Preliminary evidence suggesting caution in the use of psychiatric self-report measures with adolescents with high-functioning autism spectrum disorders. Research in Autism Spectrum Disorders, 5(1), 164–174. https://doi.org/10.1016/j.rasd.2010.03.006
Muthén, L. K., & Muthén, B. O. (1998). Mplus User’s Guide (8th ed.). UK: Muthén & Muthén.
Pellicano, E., Kenny, L., Brede, J., Klaric, E., Lichwa, H., & McMillin, R. (2017). Executive function predicts school readiness in autistic and typical preschool children. Cognitive Development, 43, 1–13. https://doi.org/10.1016/j.cogdev.2017.02.003
Pennington, B. F., & Ozonoff, S. (1996). Executive functions and developmental psychopathology. Journal of Child Psychology and Psychiatry and Allied Disciplines, 37(1), 51–87. https://doi.org/10.1111/j.1469-7610.1996.tb01380.x
Petcu, S. D., Van Horn, M. L., & Shogren, K. A. (2017). Self-determination and the enrollment in and completion of postsecondary education for students with disabilities. Career Development and Transition for Exceptional Individuals, 40(4), 225–234. https://doi.org/10.1177/2165143416670135
Pierson, M. R., Carter, E. W., Lane, K. L., & Glaeser, B. C. (2008). Factors influencing the self-determination of transition-age youth with high-incidence disabilities. Career Development for Exceptional Individuals, 31(2), 115–125. https://doi.org/10.1177/0885728808317659
Pugliese, C. E., Anthony, L. G., Strang, J. F., Dudley, K., Wallace, G. L., Naiman, D. Q., & Kenworthy, L. (2016). Longitudinal examination of adaptive behavior in autism spectrum disorders: influence of executive function. Journal of Autism and Developmental Disorders, 46(2), 467–477. https://doi.org/10.1007/s10803-015-2584-5
Pugliese, C., Anthony, L., Strang, J., Dudlley, K., Wallace, G., & Kenworthy, L. (2015). Increasing adaptive behavior skill deficits from childhood to adolescence in autism spectrum disorder: Role of executive function. Journal of Autism and Developmental Disorders, 45(6), 1579–1587. https://doi.org/10.1002/aur.1474.Replication
Radloff, L. (1977). The CED-D scale: A self-report depression scale for research in the general population. Applied Psychological Measurement, 1(3), 385–401. https://doi.org/10.1177/014662167700100306
Roth, R. M., Isquith, P. K., & Gioia, G. A. (2005). Behavior Rating Inventory of Executive Function—Adult Version (BRIEF-A). Psychological Assessment Resources
Roth, R. M., Baribeau, J., Milovan, D. L., & O’Connor, K. (2004). Speed and accuracy on tests of executive function in obsessive–compulsive disorder. Brain and Cognition, 54(3), 263–265. https://doi.org/10.1016/j.bandc.2004.02.053
Roux, A. M., Shattuck, P. T., Rast, J. E., Rava, J. A., & Anderson, K. A. (2015). National Autism Indicators report: transition into young adulthood. In Life Course Outcomes Research Program, A.J. Drexel Autism Institute, Drexel University.
Shattuck, P. T., Narendorf, S. C., Cooper, B., Sterzing, P. R., Wagner, M., & Taylor, J. L. (2012). Post-secondary education and employment among youth with an autism spectrum disorder. Pediatrics, 129(6), 1042–1049. https://doi.org/10.1542/peds.2011-2864
Shogren, K. A., & Plotner, A. J. (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
Shogren, K. A., & Shaw, L. A. (2017). The impact of personal factors on self-determination and early adulthood outcome constructs in youth with disabilities. Journal of Disability Policy Studies, 27(4), 223–233. https://doi.org/10.1177/1044207316667732
Shogren, K. A., Wehmeyer, M. L., Palmer, S. B., Rifenbark, G. G., & Little, T. D. (2015). Relationships between self-determination and postschool outcomes for youth with disabilities. Journal of Special Education, 48(4), 256–267. https://doi.org/10.1177/0022466913489733
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
Taylor, J. L., & DaWalt, L. S. (2017). Brief report: Postsecondary work and educational disruptions for youth on the autism spectrum. Journal of Autism and Developmental Disorders, 47(12), 4025–4031. https://doi.org/10.1007/s10803-017-3305-z
Taylor, J. L., & Gotham, K. O. (2016). Cumulative life events, traumatic experiences, and psychiatric symptomatology in transition-aged youth with autism spectrum disorder. Journal of Neurodevelopmental Disorders, 8(1), 28. https://doi.org/10.1186/s11689-016-9160-y
Taylor, J. L., & Mailick, M. R. (2014). A longitudinal examination of 10-year change in vocational and educational activities for adults with autism spectrum disorders. Developmental Psychology, 50(3), 699–708. https://doi.org/10.1037/a0034297
Taylor, J. L., & Seltzer, M. M. (2011). Employment and post-secondary educational activities for young adults with autism spectrum disorders during the transition to adulthood a. Journal of Autism and Developmental Disorders, 41(5), 566–574. https://doi.org/10.1007/s10803-010-1070-3
Tomaszewski, B., Kraemer, B., Steinbrenner, J. R., Smith DaWalt, L., Hall, L. J., Hume, K., & Odom, S. (2020). Student, educator, and parent perspectives of self-determination in high school students with autism spectrum disorder. Autism Research, 13(12), 2164–2176. https://doi.org/10.1002/aur.2337
Van Dam, N. T., & Earleywine, M. (2011). Validation of the Center for Epidemiologic Studies Depression Scale-Revised (CESD-R): Pragmatic depression assessment in the general population. Psychiatry Research, 186(1), 128–132. https://doi.org/10.1016/j.psychres.2010.08.018
Van Hees, V., Moyson, T., & Roeyers, H. (2015). Higher education experiences of students with autism spectrum disorder: Challenges, benefits and support needs. Journal of Autism and Developmental Disorders, 45(6), 1673–1688. https://doi.org/10.1007/s10803-014-2324-2
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
Wallace, G. L., Yerys, B. E., Peng, C., Dlugi, E., Anthony, L. G., & Kenworthy, L. (2016). Assessment and treatment of executive function impairments in autism spectrum disorder: An update. International Review of Research in Developmental Disabilities, 51, 85–122. https://doi.org/10.1016/bs.irrdd.2016.07.004
Wechsler, D. (2011). Wechsler abbreviated scale of intelligence (2nd ed., WASI–II). Pearson.
Wehmeyer, M. L. (1998). Self-determination and individuals with significant disabilities: examining meanings and misinterpretations. Journal of the Association for Persons with Severe Handicaps. https://doi.org/10.2511/rpsd.23.1.5
Wehmeyer, M. L., & Garner, N. W. (2003). The impact of personal characteristics of people with intellectual and developmental disability on self-determination and autonomous functioning. Journal of Applied Research in Intellectual Disabilities, 16(4), 255–265. https://doi.org/10.1046/j.1468-3148.2003.00161.x
Wehmeyer, M., & Schwartz, M. (1997). Self-determination and positive adult outcomes: A follow-up study of youth with mental retardation or learning disabilities. Exceptional Children, 63(2), 245–255. https://doi.org/10.1177/001440299706300207
Wehmeyer, M. L., Shogren, K. A., Zager, D., Smith, T. E. C., Shogren, K. A., Zager, D., Smith, T. E. C., & Simpson, R. (2010). Research-based principles and practices for educating and social interactions. Education & Training in Autism & Developmental Disabilities, 45(4), 475–486.
Wei, X., Wagner, M., Hudson, L., Yu, J. W., & Javitz, H. (2016). The effect of transition planning participation and goal-setting on college enrollment among youth with autism spectrum disorders. Remedial and Special Education, 37(1), 3–14. https://doi.org/10.1177/0741932515581495
White, I. R., Royston, P., & Wood, A. M. (2011). Multiple imputation using chained equations: Issues and guidance for practice. Statistics in Medicine, 30(4), 377–399. https://doi.org/10.1002/sim.4067
White, K., Flanagan, T. D., & Nadig, A. (2018). Examining the relationship between self-determination and quality of life in young adults with autism spectrum disorder. Journal of Developmental and Physical Disabilities, 30(6), 735–754. https://doi.org/10.1007/s10882-018-9616-y
White, S. W., Elias, R., Capriola-Hall, N. N., Smith, I. C., Conner, C. M., Asselin, S. B., Howlin, P., Getzel, E. E., & Mazefsky, C. A. (2017). Development of a college transition and support program for students with autism spectrum disorder. Journal of Autism and Developmental Disorders, 47(10), 3072–3078. https://doi.org/10.1007/s10803-017-3236-8
White, S. W., Smith, I. C., Miyazaki, Y., Conner, C. M., Elias, R., & Capriola-Hall, N. N. (2019). Improving transition to adulthood for students with autism: A randomized controlled trial of STEPS. Journal of Clinical Child and Adolescent Psychology. https://doi.org/10.1080/15374416.2019.1669157
Wolman, J. M., Campeau, P. L., DuBois, P. A., Mithaug, D. E., & Stolarkski, V. S. (1994). American Institutes for Research: Self-Determination Scale and User Guide. American Institute for Research.
Zalewska, A., Migliore, A., & Butterworth, J. (2016). Self-determination, social skills, job search, and transportation: Is there a relationship with employment of young adults with autism? Journal of Vocational Rehabilitation, 45(3), 225–239. https://doi.org/10.3233/JVR-160825
Zheng, C., Gaumer Erickson, A., Kingston, N. M., & Noonan, P. M. (2014). The relationship among self-determination, self-concept, and academic achievement for students with learning disabilities. Journal of Learning Disabilities, 47(5), 462–474. https://doi.org/10.1177/0022219412469688
Zuckerman, H., Pan, Z., Park, C., Brietzke, E., Musial, N., Shariq, A. S., Iacobucci, M., Yim, S. J., Lui, L. M. W., Rong, C., & McIntyre, R. S. (2018). Recognition and treatment of cognitive dysfunction in major depressive disorder. Frontiers in Psychiatry. https://doi.org/10.3389/fpsyt.2018.00655
Acknowledgment
Brianne Tomaszewski was supported by the US National Institutes of Health NICHD through grant T32HD040127 and the Department of Defense through Grant W81XWH1910826. The work here was supported by the National Institute of Disability, Independent Living, & Rehabilitation Research through Grant ACL 90IFRE0019 and US National Institutes of Health NIMH through Grant K23MH110612.
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Tomaszewski, B., Klinger, L.G. & Pugliese, C.E. Self-Determination in Autistic Transition-Aged Youth without Intellectual Disability. J Autism Dev Disord 52, 4067–4078 (2022). https://doi.org/10.1007/s10803-021-05280-6
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DOI: https://doi.org/10.1007/s10803-021-05280-6