'Recognized, Valued and Supported'? The Experiences of Adult Siblings of People with Autism Plus Learning Disability

Journal of Applied Research in Intellectual Disabilities : JARID
Rosemary Tozer, Karl Atkin

Abstract

The potential of adult siblings to offer long-term support to a brother or sister with autism is rarely realized. To understand this, our study explores the expectations of social care among adult siblings. Using qualitative interviews, we spoke to 21 adult siblings about their family relationships and engagement with service delivery, met with 12 of their siblings with autism and talked to 12 social care staff. Siblings, although reflecting on the difficulties of growing up with someone who had autism, expressed a commitment towards their brother or sister. Most wanted involvement in their care. While some siblings described positive relationships with services, many felt marginalized. Practitioners largely confirmed their perceptions, while offering a justification for why they struggled to engage with adult siblings. By understanding the way relationships between siblings change over time, adult siblings' contribution to the lives of their disabled brother or sister can be better supported.

References

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Feb 16, 2007·Journal of Child Psychology and Psychiatry, and Allied Disciplines·Krista GassJudy Dunn
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Nov 11, 2010·Journal of Intellectual Disabilities : JOID·Deborah DavysCarol Haigh

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Citations

Nov 17, 2017·Autism : the International Journal of Research and Practice·Jordan SibeoniAnne Revah-Levy
Jun 29, 2018·Journal of Applied Research in Intellectual Disabilities : JARID·Hester NoonanCharlotte Wilson
Jul 11, 2019·Journal of Autism and Developmental Disorders·Alexander C Jensen, Gael I Orsmond
Jan 8, 2019·Disability and Rehabilitation·Megan Elizabeth WareKevin Kane McCully
Feb 27, 2021·Inquiry : a Journal of Medical Care Organization, Provision and Financing·Natalie Zambrino, Ingeborg Hedderich

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