Aging in Place in Every Community: Social Exclusion Experiences of Parents of Adult children With Autism Spectrum Disorder

This article offers an examination of aging processes of lifelong caregivers and the possibilities for social exclusion place experienced by parents of adult children with autism spectrum disorder (ASD). This study of parental caregivers (n = 51) sheds light on how enduring caregiving roles can lead...

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Bibliographic Details
Published in:Research on aging 2018-07, Vol.40 (6), p.535-557
Main Authors: Marsack, Christina N., Perry, Tam E.
Format: Article
Language:English
Subjects:
Adult
Adult Children
Adults
Advocacy
Aging
Aging in place
Autism
Autism Spectrum Disorder
Autistic children
Caregivers
Caregiving
Communication
Families & family life
Female
Humans
Independent Living
Male
Parent-child relations
Parents
Parents & parenting
Prejudice
Relatives
Respite care
Social exclusion
Social Isolation
Social Stigma
Stigma
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Summary:This article offers an examination of aging processes of lifelong caregivers and the possibilities for social exclusion place experienced by parents of adult children with autism spectrum disorder (ASD). This study of parental caregivers (n = 51) sheds light on how enduring caregiving roles can lead to social exclusion in three ways: misunderstanding of ASD and stigma, the complexity of the caregiving roles, and impact on daily routines including challenges with long-term planning for both the adult children and the parental caregivers. Implications for practice to address social exclusion include education and building greater communication ties among family member for family members and advocacy for more and higher quality services including respite care. This article concludes with discussion of the impact of this aging, yet caregiving population and the need for knowledge about aging processes and anticipating aging for these caregivers.
ISSN:0164-0275
1552-7573
DOI:10.1177/0164027517717044