Skip to main content
Top
Gepubliceerd in: Journal of Autism and Developmental Disorders 8/2019

02-05-2019 | Original Paper

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”

Auteurs: Parisa Ghanouni, Tal Jarus, Jill G. Zwicker, Joseph Lucyshyn, Stephanie Chauhan, Chelsea Moir

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 8/2019

Log in om toegang te krijgen
share
DELEN

Deel dit onderdeel of sectie (kopieer de link)

  • Optie A:
    Klik op de rechtermuisknop op de link en selecteer de optie “linkadres kopiëren”
  • Optie B:
    Deel de link per e-mail

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.
Literatuur
go back to reference Aan Het Rot, M., & Hogenelst, K. (2014). The influence of affective empathy and autism spectrum traits on empathic accuracy. PLoS ONE, 9, e98436.CrossRef Aan Het Rot, M., & Hogenelst, K. (2014). The influence of affective empathy and autism spectrum traits on empathic accuracy. PLoS ONE, 9, e98436.CrossRef
go back to reference 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. 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.
go back to reference 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.CrossRef 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.CrossRef
go back to reference Baron-Cohen, S. (2009). Autism: the empathizing–systemizing (E-S) theory. Annals of the New York Academy of Sciences, 1156, 68–80.CrossRef Baron-Cohen, S. (2009). Autism: the empathizing–systemizing (E-S) theory. Annals of the New York Academy of Sciences, 1156, 68–80.CrossRef
go back to reference Baron-Cohen, S. (2010). Empathizing, systemizing, and the extreme male brain theory of autism. Progress in Brain Research, 186, 167–175.CrossRef Baron-Cohen, S. (2010). Empathizing, systemizing, and the extreme male brain theory of autism. Progress in Brain Research, 186, 167–175.CrossRef
go back to reference 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. 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.
go back to reference 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.CrossRef 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.CrossRef
go back to reference 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.CrossRef 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.CrossRef
go back to reference 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.CrossRef 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.CrossRef
go back to reference 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.CrossRef 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.CrossRef
go back to reference 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.CrossRef 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.CrossRef
go back to reference Garfin, D. G., & Lord, C. (1986). Communication as a social problem in autism. Social behavior in autism, 237-261. Garfin, D. G., & Lord, C. (1986). Communication as a social problem in autism. Social behavior in autism, 237-261.
go back to reference 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.CrossRef 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.CrossRef
go back to reference 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. 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.
go back to reference 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.CrossRef 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.CrossRef
go back to reference 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.CrossRef 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.CrossRef
go back to reference 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.CrossRef 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.CrossRef
go back to reference Jantz, K. M. (2011). Support groups for adults with Asperger syndrome. Focus on Autism and Other Developmental Disabilities, 26, 119–128.CrossRef Jantz, K. M. (2011). Support groups for adults with Asperger syndrome. Focus on Autism and Other Developmental Disabilities, 26, 119–128.CrossRef
go back to reference Kawachi, I., & Berkman, L. F. (2001). Social ties and mental health. Journal of Urban Health, 78, 458–467.CrossRef Kawachi, I., & Berkman, L. F. (2001). Social ties and mental health. Journal of Urban Health, 78, 458–467.CrossRef
go back to reference 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.CrossRef 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.CrossRef
go back to reference 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.CrossRef 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.CrossRef
go back to reference Krefting, L. (1991). Rigor in qualitative research: The assessment of trustworthiness. American Journal of Occupational Therapy, 45, 214–222.CrossRef Krefting, L. (1991). Rigor in qualitative research: The assessment of trustworthiness. American Journal of Occupational Therapy, 45, 214–222.CrossRef
go back to reference Law, M. (2002). Participation in the occupations of everyday life. American Journal of Occupational Therapy, 56, 640–649.CrossRef Law, M. (2002). Participation in the occupations of everyday life. American Journal of Occupational Therapy, 56, 640–649.CrossRef
go back to reference 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.CrossRef 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.CrossRef
go back to reference 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.CrossRef 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.CrossRef
go back to reference 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.CrossRef 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.CrossRef
go back to reference 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.CrossRef 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.CrossRef
go back to reference 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.CrossRef 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.CrossRef
go back to reference 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.CrossRef 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.CrossRef
go back to reference Lollar, D. J., & Simeonsson, R. J. (2005). Diagnosis to function: classification for children and youths. Journal of Developmental and Behavioral Pediatrics, 26, 323–330.CrossRef Lollar, D. J., & Simeonsson, R. J. (2005). Diagnosis to function: classification for children and youths. Journal of Developmental and Behavioral Pediatrics, 26, 323–330.CrossRef
go back to reference 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.CrossRef 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.CrossRef
go back to reference 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.CrossRef 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.CrossRef
go back to reference 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.CrossRef 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.CrossRef
go back to reference 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.CrossRef 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.CrossRef
go back to reference 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.CrossRef 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.CrossRef
go back to reference 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.CrossRef 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.CrossRef
go back to reference 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.CrossRef 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.CrossRef
go back to reference 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.CrossRef 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.CrossRef
go back to reference 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.CrossRef 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.CrossRef
go back to reference 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. 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.
go back to reference 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.CrossRef 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.CrossRef
go back to reference 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.CrossRef 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.CrossRef
go back to reference Sperry, L. A., & Mesibov, G. B. (2005). Perceptions of social challenges of adults with autism spectrum disorder. Autism, 9, 362–376.CrossRef Sperry, L. A., & Mesibov, G. B. (2005). Perceptions of social challenges of adults with autism spectrum disorder. Autism, 9, 362–376.CrossRef
go back to reference 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.CrossRef 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.CrossRef
go back to reference Thorne, S. (2000). Data analysis in qualitative research. Evidence based nursing, 3, 68–70.CrossRef Thorne, S. (2000). Data analysis in qualitative research. Evidence based nursing, 3, 68–70.CrossRef
go back to reference 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.CrossRef 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.CrossRef
go back to reference 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.CrossRef 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.CrossRef
go back to reference 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. 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.
go back to reference 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. 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.
Metagegevens
Titel
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”
Auteurs
Parisa Ghanouni
Tal Jarus
Jill G. Zwicker
Joseph Lucyshyn
Stephanie Chauhan
Chelsea Moir
Publicatiedatum
02-05-2019
Uitgeverij
Springer US
Gepubliceerd in
Journal of Autism and Developmental Disorders / Uitgave 8/2019
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI
https://doi.org/10.1007/s10803-019-04036-7

Andere artikelen Uitgave 8/2019

Journal of Autism and Developmental Disorders 8/2019 Naar de uitgave