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09-12-2022 | Original Paper

A Qualitative Study of Adults’ and Support Persons’ Experiences of Support After Autism Diagnosis

Auteurs: Yunhe Huang, Samuel R. C. Arnold, Kitty-Rose Foley, Julian N. Trollor

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 3/2024

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Abstract

Adulthood autism diagnosis has become increasingly common, but little is known about post-diagnosis support experiences and needs. We interviewed 19 autistic adults and 4 support persons on experiences of formal and informal post-diagnosis support. Reflexive thematic analysis was used to identify themes. Participants reported difficulties accessing suitable formal support, especially regarding education and employment. Informal support was helpful but created challenges in the relationships between autistic adults and support persons. For autistic adults, support from autistic peers fostered belonging and self-acceptance. We also identified complex interactions between adults’ post-diagnosis identity development and support experiences as they resolved the dilemma between self-acceptance and a desire to change. Findings have important implications for services working with autistic adults and their families.
Literatuur
go back to reference Alvares, G. A., Bebbington, K., Cleary, D., Evans, K., Glasson, E. J., Maybery, M. T., Pillar, S., Uljarević, M., Varcin, K., Wray, J., & Whitehouse, A. J. O (2019). The misnomer of ‘high functioning autism’: intelligence is an imprecise predictor of functional abilities at diagnosis. Autism, 24(1), 221–232. https://doi.org/10.1177/1362361319852831.CrossRefPubMed Alvares, G. A., Bebbington, K., Cleary, D., Evans, K., Glasson, E. J., Maybery, M. T., Pillar, S., Uljarević, M., Varcin, K., Wray, J., & Whitehouse, A. J. O (2019). The misnomer of ‘high functioning autism’: intelligence is an imprecise predictor of functional abilities at diagnosis. Autism, 24(1), 221–232. https://​doi.​org/​10.​1177/​1362361319852831​.CrossRefPubMed
go back to reference Baker, D. L. (2011). The politics of neurodiversity: why public policy matters. Lynn Rienner Publishers. Baker, D. L. (2011). The politics of neurodiversity: why public policy matters. Lynn Rienner Publishers.
go back to reference Brooke, V., Brooke, A. M., Schall, C., Wehman, P., McDonough, J., Thompson, K., & Smith, J. (2018). Employees with autism spectrum disorder achieving long-term employment success: a retrospective review of employment retention and intervention. Research and Practice for Persons with Severe Disabilities, 43(3), 181–193. https://doi.org/10.1177/1540796918783202.CrossRef Brooke, V., Brooke, A. M., Schall, C., Wehman, P., McDonough, J., Thompson, K., & Smith, J. (2018). Employees with autism spectrum disorder achieving long-term employment success: a retrospective review of employment retention and intervention. Research and Practice for Persons with Severe Disabilities, 43(3), 181–193. https://​doi.​org/​10.​1177/​1540796918783202​.CrossRef
go back to reference Chapman, R. (2019). Neurodiversity theory and its discontents: Autism, schizophrenia, and the social model of disability. In S. Tekin, & R. Bluhm (Eds.), The Bloomsbury companion to philosophy of psychiatry (pp. 371–389). Bloomsbury Academic. Chapman, R. (2019). Neurodiversity theory and its discontents: Autism, schizophrenia, and the social model of disability. In S. Tekin, & R. Bluhm (Eds.), The Bloomsbury companion to philosophy of psychiatry (pp. 371–389). Bloomsbury Academic.
go back to reference Jiranek, D., & Kirby, N. (1990). The job satisfaction and/or psychological well being of young adults with an intellectual disability and nondisabled young adults in either sheltered employment, competitive employment or unemployment. Australia and New Zealand Journal of Developmental Disabilities, 16(2), 133–148. https://doi.org/10.1080/07263869000033951.CrossRef Jiranek, D., & Kirby, N. (1990). The job satisfaction and/or psychological well being of young adults with an intellectual disability and nondisabled young adults in either sheltered employment, competitive employment or unemployment. Australia and New Zealand Journal of Developmental Disabilities, 16(2), 133–148. https://​doi.​org/​10.​1080/​0726386900003395​1.CrossRef
go back to reference Patton, M. Q. (1990). Qualitative evaluation and research methods (2nd ed.). SAGE Publications. Patton, M. Q. (1990). Qualitative evaluation and research methods (2nd ed.). SAGE Publications.
go back to reference Shakespeare, T. (2017). The social model of disability. In L. J. Davis (Ed.), The disability studies reader (pp. 195–203). Routledge. Shakespeare, T. (2017). The social model of disability. In L. J. Davis (Ed.), The disability studies reader (pp. 195–203). Routledge.
go back to reference Shand, A. J., Close, S. A. D., & Shah, P. (2020). Greater autism knowledge and contact with autistic people are independently associated with favourable attitudes towards autistic people. Experimental Results, 1, https://doi.org/10.1017/exp.2020.46. e46, Article e46. Shand, A. J., Close, S. A. D., & Shah, P. (2020). Greater autism knowledge and contact with autistic people are independently associated with favourable attitudes towards autistic people. Experimental Results, 1, https://​doi.​org/​10.​1017/​exp.​2020.​46. e46, Article e46.
Metagegevens
Titel
A Qualitative Study of Adults’ and Support Persons’ Experiences of Support After Autism Diagnosis
Auteurs
Yunhe Huang
Samuel R. C. Arnold
Kitty-Rose Foley
Julian N. Trollor
Publicatiedatum
09-12-2022
Uitgeverij
Springer US
Gepubliceerd in
Journal of Autism and Developmental Disorders / Uitgave 3/2024
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI
https://doi.org/10.1007/s10803-022-05828-0