Adults with autism living at home or in non-family settings: positive and negative aspects of residential status.
Moms stay highly involved no matter where their adult with autism lives, but they see co-residence as best for the family and out-of-home placement as best for the adult.
01Research in Context
What this study did
Researchers asked mothers where their adult son or daughter with autism lived. They also asked how each living setup helped or hurt the family and the adult.
The team used a survey. They gathered views from moms across the United States.
What they found
Mothers said keeping the adult child at home helped the family most. They said moving the adult out helped the adult most.
Even after an out-of-home move, moms stayed very involved. They visited, called, and helped with care.
How this fits with other research
McClannahan et al. (1990) warned that most group homes were built for people with intellectual disability, not autism. Borrero et al. (2005) later showed moms still pick those homes when they think the adult will benefit.
Benderix et al. (2006) interviewed one family the next year. The parents felt relief and guilt at the same time. This matches the mixed feelings in Borrero et al. (2005).
Bayat (2007) found many autism families feel resilient and closer. That sounds opposite to the mixed views in Borrero et al. (2005). The gap comes from sampling: M studied support-group families who sought help, while W surveyed moms making placement choices.
Why it matters
When you guide families, show both sides. Living at home may keep daily routines stable for the adult and save money, yet exhaust parents. An autism-friendly group home can ease family stress and build skills, but moms will still need your help to stay connected and monitor care. Plan visits, phone check-ins, and staff training together so the move truly helps both sides.
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02At a glance
03Original abstract
BACKGROUND: Very little is known about the context of caregiving by parents of adults with autism or about the perceived impacts of continued patterns of co-residence vs. out-of-family living. In the present study, maternal assessments of residential status, involvement with adult children living in a non-family setting, and the impacts on mothers of their residential arrangements were examined. METHODS: Mothers from 133 families of adults (aged 22 years and older) with autism spectrum disorder (ASD) completed questionnaires as part of a longitudinal study on family caregiving. Mothers completed open-ended questions regarding the positive and negative aspects of their child's residential arrangement. Mothers also completed scaled questions regarding their satisfaction with their child's residential arrangement, the different ways in which people's lives change after a relative moves from the home, and the frequency of contact with their son or daughter. RESULTS: Mothers found co-residing with their adult child to be of greatest positive benefit to the family while those living apart found this residential arrangement of greatest benefit to the son or daughter with ASD. The greatest negative consequences for co-residing mothers were understood to fall on families, while mothers felt the majority of negative consequences for those that lived apart. There was a high level of contact and maternal involvement between the mother and adult child with ASD even after out-of-home placement. CONCLUSIONS: Residential status, as appraised by mothers, has varying impacts on the individual with ASD, on the family, and on mothers as individuals and caregivers. The present analysis suggests the multifaceted and highly contingent maternal experience associated with where her child with ASD lives. Among families whose children live elsewhere, there is an impressive amount of continued contact between these families and their son/daughter.
Journal of intellectual disability research : JIDR, 2005 · doi:10.1111/j.1365-2788.2004.00599.x