Parents often provide the bulk of caregiving supports for their adult offspring with intellectual and developmental disabilities (IDD). Given the longer lives of people with IDD, however, such caregiving roles may transition to siblings. Thus, it is critical to conduct future planning among family members (e.g., parents, siblings) to prepare for the transition of caregiving roles. To this end, we interviewed 10 parent-sibling dyads (N = 20) of people with IDD about long-term planning. Both parents and siblings reported family-related and systemic barriers to developing future plans. Siblings (unlike parents) reported wanting more communication among family members about planning. Implications for future research and practice are discussed.
Parents of autistic children experience more parenting stress and are at increased risk for poor mental and physical health compared with parents of neurotypical children; however, not all parents are distressed. The present study used a person-centered analytic approach to identify profiles of the parenting experience in a sample of 183 mothers and fathers of an autistic child (5–12 years old) and to examine associations between profile membership and child outcomes. Results indicated three profiles for mothers: Adaptive (41.1%; high authoritative parenting, lowest stress, and highest competence), Average (42.1%; sample average of all parenting indicators), and Distressed (16.8%; high stress, low competence, maladaptive parenting strategies). Fathers were classified into four profiles: Adaptive (33.3%), Average (37.7%), Distressed—Permissive (15.3%; high stress, low competence, permissive parenting strategies), and Distressed—Authoritarian (13.6%; some stress, lowest competence, authoritarian parenting strategies). The profiles differed on child internalizing and externalizing symptoms and autism symptom severity. Comparative analysis also revealed that children did better when at least one parent was included in the Adaptive group. Implications of these findings are discussed and include fostering empowering messages to parents as well as providing useful new insight in the context of family-focused interventions. Lay abstract Research shows that parents of autistic children, on average, are stressed; however, there is likely an array of factors that characterize the parenting experience in the context of autism other than stress. Understanding the diversity in the parenting experiences of both mothers and fathers of autistic children is important in the development of family-based intervention. A total of 188 co-habiting couples with an autistic child described their parenting experiences using a series of questionnaires examining their feelings of stress, parenting competence, and parenting attitudes and behaviors. We then sorted responses into profiles—three for mothers and four for fathers. We found that children of parents who reported the least amount of stress, highest feeling of competence, and use of responsive and directive parenting strategies (the Adaptive profile) had children with the least severe behavioral problems and autism symptoms. It was not necessary for both parents to be in the Adaptive category for child emotional and behavioral problems to less severe. We found that children did just as well when one parent was Adaptive compared with when both parents fell into this category.
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