Who cares? A scoping review about the experiences of parental caregivers of autistic adults.

Abstract

The autistic population is growing and ageing and this also applies to the parents. Despite this, research about parental experiences is still relatively scarce. Even though studies show, compared with adults with other disabilities, parents of autistic adolescents and adults report a decrease in well-being and that caregiving is often a lifelong commitment. This scoping review maps, synthesises and identifies gaps in previous research as regards the experiences of parental caregivers of adult autistic children. The review was based on Arksey and Malley's framework and six databases were searched. The results show how the research has focused on the well-being and consequences of daily caregiving for an American middle-class mother who co-resides with an adult son. To enhance knowledge about formal services and service needs, more research is necessary on different welfare regimes and social contexts.