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Perceived Barriers and Existing Challenges in Participation of Children with Autism Spectrum Disorders: “He Did Not Understand and No One Else Seemed to Understand Him”

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Abstract

Social participation is one of the most important predictors of the children’s physical and mental health. Although it is evidenced that children with autism spectrum disorder (ASD) have restricted social participation, it is unclear which factors play a significant role. This research aimed to uncover perceived barriers of social participation by involving 26 stakeholders including parents of children with ASD, youth with ASD, and clinicians working with individuals with ASD in focus groups and interviews. Using thematic analysis yielded three themes including (a) difficulty understanding social situations; (b) maladaptive behaviours; and (c) conflicting priorities and restricted nature of training. This project was the first study to involve key stakeholders to highlight barriers of social participation among individuals with ASD.

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References

  • Aan Het Rot, M., & Hogenelst, K. (2014). The influence of affective empathy and autism spectrum traits on empathic accuracy. PLoS ONE, 9, e98436.

    Article  Google Scholar 

  • American Psychiatric Association, & American Psychiatric Association, DSM-5 Task Force. (2013). Diagnostic and statistical manual of mental disorders: DSM-5 (5th ed.). Washington, D.C: American Psychiatric Publishing.

  • Baio, J., et al. (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, 67, 1–23.

    Article  Google Scholar 

  • Baron-Cohen, S. (2009). Autism: the empathizing–systemizing (E-S) theory. Annals of the New York Academy of Sciences, 1156, 68–80.

    Article  Google Scholar 

  • Baron-Cohen, S. (2010). Empathizing, systemizing, and the extreme male brain theory of autism. Progress in Brain Research, 186, 167–175.

    Article  Google Scholar 

  • Bellini, S., Gardner, L., Hudock, R., & Kashima-Ellingson, Y. (2016). The Use of Video Self-Modeling and Peer Training to Increase Social Engagement in Preschool Children on the Autism Spectrum. Paper presented at the School Psychology Forum.

  • Bensalah, L., Caillies, S., & Anduze, M. (2016). Links among cognitive empathy, theory of mind, and affective perspective taking by young children. The Journal of Genetic Psychology, 177, 17–31.

    Article  Google Scholar 

  • Boyd, B. A., Conroy, M. A., Mancil, G. R., Nakao, T., & Alter, P. J. (2007). Effects of circumscribed interests on the social behaviors of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 37, 1550–1561.

    Article  Google Scholar 

  • Cappadocia, M. C., Weiss, J. A., & Pepler, D. (2012). Bullying experiences among children and youth with autism spectrum disorders. Journal of Autism and Developmental Disorders, 42, 266–277.

    Article  Google Scholar 

  • Chevallier, C., Kohls, G., Troiani, V., Brodkin, E. S., & Schultz, R. T. (2012). The social motivation theory of autism. Trends in Cognitive Sciences, 16, 231–239.

    Article  Google Scholar 

  • Dawson, G., & Fernald, M. (1987). Perspective-taking ability and its relationship to the social behavior of autistic children. Journal of Autism and Developmental Disorders, 17, 487–498.

    Article  Google Scholar 

  • Garfin, D. G., & Lord, C. (1986). Communication as a social problem in autism. Social behavior in autism, 237-261.

  • Gates, J. A., Kang, E., & Lerner, M. D. (2017). Efficacy of group social skills interventions for youth with autism spectrum disorder: A systematic review and meta-analysis. Clinical Psychology Review, 52, 164–181.

    Article  Google Scholar 

  • Geisthardt, C. L., Brotherson, M. J., & Cook, C. C. (2002). Friendships of children with disabilities in the home environment. Education and Training in Mental Retardation and Developmental Disabilities, 235-252.

  • Gresham, F. M., & MacMillan, D. L. (1997). Autistic recovery? an analysis and critique of the empirical evidence on the early intervention project. Behavioral Disorders, 22, 185–201.

    Article  Google Scholar 

  • 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, 554–563.

    Article  Google Scholar 

  • Hodgetts, S., Richards, K., & Park, E. (2018). Preparing for the future: multi-stakeholder perspectives on autonomous goal setting for adolescents with autism spectrum disorders. Disability and Rehabilitation, 40, 2372–2379.

    Article  Google Scholar 

  • Jantz, K. M. (2011). Support groups for adults with Asperger syndrome. Focus on Autism and Other Developmental Disabilities, 26, 119–128.

    Article  Google Scholar 

  • Kawachi, I., & Berkman, L. F. (2001). Social ties and mental health. Journal of Urban Health, 78, 458–467.

    Article  Google Scholar 

  • King, G., Lawm, M., King, S., Rosenbaum, P., Kertoy, M. K., & Young, N. L. (2003). A conceptual model of the factors affecting the recreation and leisure participation of children with disabilities. Physical & Occupational Therapy in Pediatrics, 23, 63–90.

    Article  Google Scholar 

  • Klin, A., Danovitch, J. H., Merz, A. B., & Volkmar, F. R. (2007). Circumscribed interests in higher functioning individuals with autism spectrum disorders: An exploratory study. Research and Practice for Persons with Severe Disabilities, 32, 89–100.

    Article  Google Scholar 

  • Krefting, L. (1991). Rigor in qualitative research: The assessment of trustworthiness. American Journal of Occupational Therapy, 45, 214–222.

    Article  Google Scholar 

  • Law, M. (2002). Participation in the occupations of everyday life. American Journal of Occupational Therapy, 56, 640–649.

    Article  Google Scholar 

  • 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, 337–342.

    Article  Google Scholar 

  • Law, M., Petrenchik, T., King, G., & Hurley, P. (2007). Perceived environmental barriers to recreational, community, and school participation for children and youth with physical disabilities. Archives of Physical Medicine and Rehabilitation, 88, 1636–1642.

    Article  Google Scholar 

  • LeBlanc, L. A., Coates, A. M., Daneshvar, S., Charlop-Christy, M. H., Morris, C., & Lancaster, B. M. (2003). Using video modeling and reinforcement to teach perspective-taking skills to children with autism. Journal of Applied Behavior Analysis, 36, 253–257.

    Article  Google Scholar 

  • Liptak, G. S., Kennedy, J. A., & Dosa, 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, 277–283.

    Article  Google Scholar 

  • Little, L. M., Sideris, J., Ausderau, K., & Baranek, G. T. (2014). Activity participation among children with autism spectrum disorder. American Journal of Occupational Therapy, 68, 177–185.

    Article  Google Scholar 

  • Locke, J., Rotheram-Fuller, E., & Kasari, C. (2012). Exploring the social impact of being a typical peer model for included children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 42, 1895–1905.

    Article  Google Scholar 

  • Lollar, D. J., & Simeonsson, R. J. (2005). Diagnosis to function: classification for children and youths. Journal of Developmental and Behavioral Pediatrics, 26, 323–330.

    Article  Google Scholar 

  • Mactavish, J. B., & Schleien, S. J. (2004). Re-injecting spontaneity and balance in family life: parents’ perspectives on recreation in families that include children with developmental disability. Journal of Intellectual Disability Research, 48, 123–141.

    Article  Google Scholar 

  • Müller, 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, 173–190.

    Article  Google Scholar 

  • Obrusnikova, I., & Cavalier, A. R. (2011). Perceived barriers and facilitators of participation in after-school physical activity by children with autism spectrum disorders. Journal of Developmental and Physical Disabilities, 23, 195–211.

    Article  Google Scholar 

  • Orinstein, A. J., Helt, M., Troyb, E., Tyson, K. E., Barton, M. L., Eigsti, I.-M., et al. (2014). Intervention for optimal outcome in children and adolescents with a history of autism. Journal of Developmental and Behavioral Pediatrics, 35, 247–256.

    Article  Google Scholar 

  • Orsmond, G. I., Krauss, M. W., & Seltzer, M. M. (2004). Peer relationships and social and recreational activities among adolescents and adults with autism. Journal of Autism and Developmental Disorders, 34, 245–256.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • Potvin, M.-C., Snider, L., Prelock, P., Kehayia, E., & Wood-Dauphinee, S. (2013). Recreational participation of children with high functioning autism. Journal of Autism and Developmental Disorders, 43, 445–457.

    Article  Google Scholar 

  • Rehfeldt, R. A., Dillen, J. E., Ziomek, M. M., & Kowalchuk, R. K. (2007). Assessing relational learning deficits in perspective-taking in children with high-functioning autism spectrum disorder. The Psychological Record, 57, 23–47.

    Article  Google Scholar 

  • Reynolds, S., Bendixen, R. M., Lawrence, T., & Lane, S. J. (2011). A pilot study examining activity participation, sensory responsiveness, and competence in children with high functioning autism spectrum disorder. Journal of Autism and Developmental Disorders, 41, 1496–1506.

    Article  Google Scholar 

  • Rosenberg, L., Bart, O., Ratzon, N. Z., & Jarus, T. (2013). Personal and environmental factors predict participation of children with and without mild developmental disabilities.Journal of Child and Family Studies, 22, 658-671.

  • Solish, A., Perry, A., & Minnes, P. (2010). Participation of children with and without disabilities in social, recreational and leisure activities. Journal of Applied Research in Intellectual Disabilities, 23, 226–236.

    Article  Google Scholar 

  • South, M., Ozonoff, S., & McMahon, W. M. (2005). Repetitive behavior profiles in Asperger syndrome and high-functioning autism. Journal of Autism and Developmental Disorders, 35, 145–158.

    Article  Google Scholar 

  • Sperry, L. A., & Mesibov, G. B. (2005). Perceptions of social challenges of adults with autism spectrum disorder. Autism, 9, 362–376.

    Article  Google Scholar 

  • Taheri, A., Perry, A., & Minnes, P. (2016). Examining the social participation of children and adolescents with Intellectual Disabilities and Autism Spectrum Disorder in relation to peers. Journal of Intellectual Disability Research, 60, 435–443.

    Article  Google Scholar 

  • Thorne, S. (2000). Data analysis in qualitative research. Evidence based nursing, 3, 68–70.

    Article  Google Scholar 

  • Tobin, M. C., Drager, K. D., & Richardson, L. F. (2014). A systematic review of social participation for adults with autism spectrum disorders: Support, social functioning, and quality of life. Research in Autism Spectrum Disorders, 8, 214–229.

    Article  Google Scholar 

  • Wang, H. Y., & Berg, C. (2014). Participation of Young Adults with High- Functioning Autism in Taiwan: A Pilot Study. OTJR: Occupation. Participation and Health, 34, 41–51.

    Article  Google Scholar 

  • Zagona, A. L., & Mastergeorge, A. M. (2016). An Empirical Review of Peer-Mediated Interventions: Implications for Young Children With Autism Spectrum Disorders. Focus on Autism and Other Developmental Disabilities, 1088357616671295.

  • Zhang, J., & Wheeler, J. J. (2011). A meta-analysis of peer-mediated interventions for young children with autism spectrum disorders. Education and Training in Autism and Developmental Disabilities, 46, 62–77.

    Google Scholar 

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Acknowledgments

We would like to express our sincere thanks to funding agencies, the Michael Smith Foundation for Health Research and UBC Peter Wall Institute for Advanced Studies for their great support.

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Authors and Affiliations

  1. Department of Occupational Therapy, Dalhousie University, 5869 University Avenue, Halifax, NS, Canada

    Parisa Ghanouni

  2. Department of Occupational Science and Occupational Therapy, University of British Columbia, T325 - 2211 Wesbrook Mall, Vancouver, BC, V6T 2B5, Canada

    Tal Jarus, Jill G. Zwicker, Stephanie Chauhan & Chelsea Moir

  3. Department of Pediatrics (Division of Developmental Pediatrics), University of British Columbia, Vancouver, Canada

    Jill G. Zwicker

  4. Child & Family Research Institute, Vancouver, Canada

    Jill G. Zwicker

  5. Sunny Hill Health Centre for Children, Vancouver, Canada

    Jill G. Zwicker

  6. Research Associate, CanChild Centre for Childhood Disability Research, Hamilton, ON, Canada

    Jill G. Zwicker

  7. Department of Educational and Counseling Psychology and Special Education, Faculty of Education, University of British Columbia, Vancouver, Canada

    Joseph Lucyshyn

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  1. Parisa Ghanouni
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  2. Tal Jarus
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  6. Chelsea Moir
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Contributions

PG, TJ, SC, and CM were involved in study design, ethics application, analysis of data, and writing or editing the manuscript. JGZ and JL were involved in the study design, editing, and reviewing the manuscript.

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Correspondence to Parisa Ghanouni.

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All procedures performed in this study were in accordance with the ethical standards of the University Behavioural Research Ethics Board.

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We obtained written informed consent from all participants prior to the study.

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Ghanouni, P., Jarus, T., Zwicker, J.G. et al. Perceived Barriers and Existing Challenges in Participation of Children with Autism Spectrum Disorders: “He Did Not Understand and No One Else Seemed to Understand Him”. J Autism Dev Disord 49, 3136–3145 (2019). https://doi.org/10.1007/s10803-019-04036-7

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  • DOI: https://doi.org/10.1007/s10803-019-04036-7

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