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Journal of Autism and Developmental Disorders

, Volume 46, Issue 3, pp 987–997 | Cite as

Participation in Daily Activities of Young Adults with High Functioning Autism Spectrum Disorder

  • Mary McCollumEmail author
  • Patti LaVesser
  • Christine Berg
Original Paper

Abstract

Young adults with an autism spectrum disorder (ASD) struggle to assume adult roles. This research assessed the feasibility of using the Adolescent and Young Adult Activity Card Sort (AYA-ACS) with emerging adults with high functioning ASD. Two phases were utilized during this research: (1) comparing the activity participation reported by emerging adults with an ASD and that reported by their caring adult; (2) examining the barriers to participation reported. Preliminary results demonstrate that the AYA-ACS appears to be a reliable and valid method of identifying emerging adults’ participation strengths as well as personal and environmental challenges in a variety of age-appropriate activities. The AYA-ACS could assist service providers by providing an understanding of the challenges to participation faced by this population and aid in developing client centered interventions.

Keywords

Autism spectrum disorder Participation Activity card sort Young adults Emerging adults Engagement Activity involvement Transition age 

Notes

Acknowledgments

This research was supported by Washington University’s Program in Occupational Therapy Grant 93160. We thank all of the participants, as well as the community agencies and Dr. Constantino for assistance with recruitment.

Author Contributions

Dr. McCollum aided in designing the study, completed interviews and data collection, data input, conducted the statistical analysis, analyzed the data, wrote the initial draft of the paper, and participated in revising the manuscript and addressing the reviewers’ comments. Dr. Berg aided in designing the study, assisted with manuscript development, provided guidance and assistance on statistical analysis, assisted with data analysis, and participated in revising the manuscript and addressing the reviewers’ comments. Dr. LaVesser aided in designing the study, assisted with manuscript development, and participated in revising the manuscript and addressing the reviewers comments.

References

  1. American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: American Psychiatric Publishing.Google Scholar
  2. Arnett, J. J. (2012). Human development: A cultural approach. New Jersey: Pearson Education Inc.Google Scholar
  3. Berg, C., McCollum, M., Cho, E., & Jason, D. (2015). Development of the adolescent and young adult activity card sort. OTJR: Occupation, Participation and Health. doi: 10.1177/1539449215578651.Google Scholar
  4. Billstedt, E., Gillberg, C., & Gillberg, C. (2005). 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, 35(3), 351–360.CrossRefPubMedGoogle Scholar
  5. Case-Smith, J., & Arbesman, M. (2008). Evidence-based review of interventions for autism used in or of relevance of occupational therapy. The American Journal of Occupational Therapy, 62(4), 416–429.CrossRefPubMedGoogle Scholar
  6. Centers for Disease Control and Prevention. (2012) Prevalence of autism spectrum disorders—autism and developmental disabilities monitoring network, 14 sites, United States, 2008. MMWR. vol 61, pp. 1–19.Google Scholar
  7. Constantino, J. N., & Gruber, C. P. (2012). Social Responsiveness Scale, (SRS- 2) (Second ed.). Torrance, CA: Western Psychological Services.Google Scholar
  8. Coster, W., & Khetani, M. A. (2008). Measuring participation of children with disabilities: Issues and challenges. Disability and Rehabilitation, 30(8), 639–648.CrossRefPubMedGoogle Scholar
  9. Eaves, L. C., & Ho, H. H. (2008). Young adult outcome of autism spectrum disorders. Journal of Autism and Developmental Disorders, 38, 739–747.CrossRefPubMedGoogle Scholar
  10. Farley, M. A., McMahon, W. M., Fombonne, E., Jenson, W. R., Miller, J., Gardner, M., et al. (2009). Twenty-year outcome for individuals with autism with average or near-average cognitive abilities. Autism Research, 2, 109–118.CrossRefPubMedGoogle Scholar
  11. Gray, K. M., Keating, C. M., Taffe, J. R., Brereton, A. V., Einfeld, S. L., Reardon, T. C., & Tonge, B. J. (2014). Adult outcomes in Autism: Community inclusion and living skills. Journal of Autism and Developmental Disorders, 44(12), 3006–3015.CrossRefPubMedGoogle Scholar
  12. Griffith, J., Dietz, A., & Weissling, K. (2014). Supporting narrative retells for people with aphasia using augmentative and alternative communication: Photographs or line drawings? Text or no text? American Journal of Speech-Language Pathology, 23(5), S213–S224.CrossRefPubMedGoogle Scholar
  13. Hart, D., Grigal, M., & Weir, C. (2010). Expanding the paradigm: Postsecondary education options for individuals with autism spectrum disorder and intellectual disabilities. Focus on Autism and Developmental Disorders, 25(3), 134–150.CrossRefGoogle Scholar
  14. Havighurst, R. (1972). Developmental tasks and education (3rd ed.). NY: D. McKay Co.Google Scholar
  15. Hendricks, D. R., & Wehman, P. (2009). Transition from school to adulthood for youth with autism spectrum disorders: Review and recommendations. Focus on Autism and Developmental Disorders, 24(2), 77–88.CrossRefGoogle Scholar
  16. Hetherington, S. A., Durant-Jones, L., Johnson, K., Nolan, K., Smith, E., Taylor-Brown, S., & Tuttle, J. (2010). The lived experiences of adolescents with disabilities and their parents in transition planning. Focus on Autism and Developmental Disorders, 25(3), 163–172.CrossRefGoogle Scholar
  17. Higgins, K., Koch, L., Boughfman, E., & Vierstra, C. (2008). School-to-work transition and Asperger syndrome. Work, 31, 291–298.PubMedGoogle Scholar
  18. Hilton, C. L., Crouch, M. C., & Israel, H. (2008). Out-of-school participation patterns in children with high-functioning autism spectrum disorders. American Journal of Occupational Therapy, 62(5), 554–563.CrossRefPubMedGoogle Scholar
  19. Hodgdon, L. (1999). Visual strategies for improving communication. Troy, MI: QuirkRoberts Publishing.Google Scholar
  20. 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.CrossRefPubMedGoogle Scholar
  21. Howlin, P., Alcock, J., & Burkin, C. (2005). An 8 year follow-up of a specialist supported employment service for high-ability adults with autism or Asperger syndrome. Autism, 9(5), 533–549.CrossRefPubMedGoogle Scholar
  22. 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.CrossRefPubMedGoogle Scholar
  23. Hume, K., Loftin, R., & Lantz, J. (2009). Increasing independence in Autism Spectrum Disorders: A review of three focused interventions. Journal of Autism and Developmental Disorders, 39, 1329–1338.CrossRefPubMedGoogle Scholar
  24. Koenig, K. P., & Kinnealey, M. (2010). Adults with an autism spectrum disorder. In H. M. Kuhaneck & R. Watling (Eds.), Autism: A comprehensive occupational therapy approach (3rd ed., pp. 235–254). Bethesda, MD: AOTA, Incorporated.Google Scholar
  25. Landis, J. R., & Koch, G. G. (1977). The measurement of observer agreement for categorical data. Biometrics, 33(1), 159–174.CrossRefPubMedGoogle Scholar
  26. Larson, R. W., & Verma, S. (1999). How children and adolescents spend time across the world: Work, play, and developmental opportunities. Psychological Bulletin, 125, 701–736.CrossRefPubMedGoogle Scholar
  27. Law, M., King, G., King, S., Kertoy, M., Hurley, P., Rosenbaum, P., et al. (2006). Patterns of participation in recreational and leisure activities among children with complex physical disabilities. Developmental Medicine and Child Neurology, 48(5), 337–342.CrossRefPubMedGoogle Scholar
  28. Law, M., Steinwender, S., & Leclair, L. (1998). Occupation, health, and well-being. Canadian Journal of Occupational Therapy, 65, 81–91.CrossRefGoogle Scholar
  29. Liptake, G. S., Kennedy, J. A., & Dorsa, N. P. (2011). Social participation in a nationally representative sample of older youth and young adults with autism. Journal of Developmental and Behavioral Pediatrics, 32(4), 277–283.CrossRefGoogle Scholar
  30. Mallinson, T., & Hammel, J. (2010). Measurement of Participation: Intersecting person, task, and environment. Archives of Physical Medicine and Rehabilitation, 91(9), S29–S33.CrossRefPubMedGoogle Scholar
  31. Matheson, L. N., & Bohr, P. C. (1997). Occupational competence across the life span. In C. H. Christiansen & C. M. Baum (Eds.), Occupational therapy: Enabling function and well-being (p. 429). Thorofare, JN: SLACK Incorporated.Google Scholar
  32. Matthews, N. L., Smith, C. J., Pollard, E., Ober-Reynolds, S., Kirwan, J., & Malligo, A. (2015). Adaptive functioning in Autism Spectrum Disorder during the transition to adulthood. Journal of Autism and Developmental Disorders, 45, 2349–2360.CrossRefPubMedGoogle Scholar
  33. Muller, E., Schuler, A., & Yates, G. B. (2008). Social challenges and supports from the perspective of individuals with Asperger syndrome and other autism spectrum disabilities. Autism, 12(2), 173–190.CrossRefPubMedGoogle Scholar
  34. Newman, L., Wagner, M., Cameto, R., & Knokey, A.-M. (2009). The post-high school outcomes of youth with disabilities up to 4 years after high school. In: A report from the national longitudinal transition study-2 (NLTS2). Menlo park, CA: SRI International.Google Scholar
  35. Orentlicher, M. L., & Olson, L. J. (2010). Transition from school to adult life for students with an autism spectrum disorder. In H. M. Kuhaneck & R. Watling (Eds.), Autism: A comprehensive occupational therapy approach (3rd ed., pp. 665–700). Bethesda, MD: AOTA, Incorporated.Google Scholar
  36. Orsmond, G. I., & Kuo, H.-Y. (2011). The daily lives of adolescents with an autism spectrum disorder. Autism, 15(5), 579–599.PubMedCentralCrossRefPubMedGoogle Scholar
  37. Orsmond, G. I., Shattuck, P. T., Cooper, B. P., Sterzing, P. R., & Anderson, K. A. (2013). Social participation among young adults with an autism spectrum disorder. Journal of Autism and Developmental Disorders, 43, 2710–2719.PubMedCentralCrossRefPubMedGoogle Scholar
  38. Pinder-Amaker, S. (2014). Identifying the unmet needs of college students on the Autism Spectrum. Harvard Review of Psychiatry, 22(2), 125–137.CrossRefPubMedGoogle Scholar
  39. Quill, K. A. (1995). Visually cued instruction for children with autism and pervasive developmental disorders. Focus on Autism and Other Developmental Disabilities, 10(3), 10–20.CrossRefGoogle Scholar
  40. Shattuck, P. T., Roux, A. M., Hudson, L. E., Taylor, J. L., Maenner, M. J., & Trani, J. F. (2012). Services for adults with an autism spectrum disorder. The Canadian Journal of Psychiatry, 57(5), 284–291.PubMedGoogle Scholar
  41. Shattuck, P. T., Steinberg, J., Yu, J., Wei, X., Cooper, B. P., Newman, L., & Roux, A. M. (2014). Disability identification and self-efficacy among college students on the autism spectrum. Autism Research and Treatment,. doi: 10.1155/2014/924182.PubMedCentralPubMedGoogle Scholar
  42. Shattuck, P. T., Wagner, M., Narendorf, S., Sterzing, P., & Hensley, M. (2011). Post-high school service use among young adults with an autism spectrum disorder. Archives of Pediatrics and Adolescent Medicine, 165(2), 141–146.PubMedCentralCrossRefPubMedGoogle Scholar
  43. Shields, N., King, M., Monique, C., & Imms, C. (2014). Is participation among children with intellectual disabilities in outside school activities similar to their typically developing peers? A systematic review. Developmental Neurorehabilitation, 17(1), 64–71.CrossRefPubMedGoogle Scholar
  44. Simeonsson, R. J., Carlson, D., Huntington, G. S., McMillen, J. S., & Brent, J. L. (2001). Students with disabilities: A national survey of participation in school activities. Disability and Rehabilitation, 23(2), 49–63.CrossRefPubMedGoogle Scholar
  45. Sparrow, S. S., Cicchetti, D. V., & Balla, D. A. (2005). Vineland adaptive behavior scales, survey forms manual (2nd ed.). Minneapolis, MN: Pearson.Google Scholar
  46. Sperry, L. A., & Mesibov, G. B. (2005). Perceptions of social challenges of adults with autism spectrum disorder. Autism, 9(4), 362–376.CrossRefPubMedGoogle Scholar
  47. Stark, S. L., & Sanford, J. A. (2005). Environmental enablers and their impact on occupational performance. In C. H. Christiansen, C. M. Baum, & J. Bass-Haugen (Eds.), Occupational therapy: Performance, participation, and well-being (3rd ed., pp. 298–327). Thorofare, NJ: SLACK Incorporated.Google Scholar
  48. Stewart, D., Staveness, C., King, G., Antle, B., & Law, M. (2006). A critical appraisal of literature reviews about the transition to adulthood for youth with disabilities. Physical and Occupational Therapy in Pediatrics, 26(4), 5–24.CrossRefPubMedGoogle Scholar
  49. Stodden, R. A., & Mruzek, D. W. (2010). An introduction to postsecondary education and employment of persons with autism and developmental disabilities. Focus on Autism and Other Developmental Disabilities, 25(3), 131–133.CrossRefGoogle Scholar
  50. 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. Journal of Autism and other Developmental Disorders, 41(5), 566–574.CrossRefGoogle Scholar
  51. Thompson, J. R., Bryant, B., Campbell, E. M., Craig, E. M., Hughes, C., Rotholz, D. A., et al. (2004). Supports intensity scale. Washington, D. C: American Association on Mental Retardation.Google Scholar
  52. Tsatsanis, K. D., Foley, C., & Donehower, C. (2004). Contemporary outcome research and programming guidelines for Asperger syndrome and high-functioning autism. Topics in Language Disorders, 24(4), 249–259.CrossRefGoogle Scholar
  53. Van Bergeijk, E., Klin, A., & Volkmar, F. (2008). Supporting more able students on the Autism Spectrum: College and beyond. Journal of Autism and Developmental Disorders, 38(7), 1359–1370.CrossRefGoogle Scholar
  54. Wang, H.-Y., & Berg, C. (2014). The participation of young adults with high-functioning Autism in Taiwan. OTJR, 34(1), 41–51.PubMedGoogle Scholar
  55. Wechsler, D. (2011). Wechsler abbreviated scale of intelligence second edition (WASI-II). Bloomington, MN: Pearson.Google Scholar
  56. Weiss, J. A., & Riosa, P. B. (2015). Thriving in youth with Autism Spectrum Disorder and intellectual disability. Journal of Autism and Developmental Disorders, 45, 2474–2486.PubMedCentralCrossRefPubMedGoogle Scholar
  57. Wilcock, A. A. (2005). Relationship of occupations to health and well-being. In C. H. Christiansen, C. M. Baum, & J. Bass-Haugen (Eds.), Occupational therapy: Performance, participation, and well-being (3rd ed., pp. 134–157). Thorofare, NJ: SLACK Incorporated.Google Scholar
  58. World Health Organization. (2001). International classification of functioning, disability and health: ICF. Geneva: World Health Organization.Google Scholar

Copyright information

© Springer Science+Business Media New York 2015

Authors and Affiliations

  • Mary McCollum
    • 1
    • 2
    Email author
  • Patti LaVesser
    • 1
    • 3
  • Christine Berg
    • 1
  1. 1.Washington University School of MedicineSt. LouisUSA
  2. 2.St. John’s Children’s HospitalSpringfieldUSA
  3. 3.University of Colorado DenverDenverUSA

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