The Politics of Autism includes a discussion of parent experiences. Back in 2004, Jane Gross wrote in The New York Times: "With rare exceptions, no disability claims more parental time and energy than autism because teaching an autistic child even simple tasks is labor intensive, and managing challenging behavior requires vigilance." New studies confirm that parenting ASD children is stressful. This finding comes as no surprise to these parents -- trust me on that -- but as Alison Singer reminds us, it is important to have systematic published research on all aspects of the issue -- even when it merely documents what people know already. Stress levels are an important element in the politics of autism, too. Stressed-out parents may lack the time and energy to engage in legislative and regulatory advocacy outside their individual cases.
We examined daily couple experiences in 174 couples who had a child with autism spectrum disorder (ASD) relative to 179 couples who had a child without disabilities and their same-day association with parent affect. Parents completed a 14-day daily diary in which they reported time with partner, partner support, partner closeness, and positive and negative couple interactions and level of positive and negative affect. One-way multivariate analyses of covariance and dyadic multilevel models were conducted. Parents of children with ASD reported less time with partner, lower partner closeness, and fewer positive couple interactions than the comparison group. Daily couple experiences were more strongly associated with parent affect in the ASD than somparison group. Findings have implications for programs and supports.From the article:
Our findings have important implications for programs and supports for parents of children with ASD. Efforts to foster adaptive daily couple experiences may lead to marked improvements in the psychological well-being of parents of children with ASD. Such efforts should focus on: (1) debunking myths (see Hartley et al. 2010) that parents of children with ASD are fated to experience dismal couple relationships by disseminating evidence that vulnerabilities are limited in scope and degree, and many couples report positive couple relationships. (2) Acknowledging the difficulty of juggling multiple demands (e.g., child with ASD, siblings, employment, couple relationship, etc.) and of having limited time with one’s partner. (3) Encouraging parents to carve out time to share feelings and thoughts and connecting with their partner, as opposed to only working through daily life demands. For example, couples could reserve 5 min in the evening for sharing stories from their day. (4) Supporting parents in creating opportunities for positive couple interactions such as doing a fun activity together or taking a moment to text/email a joke or give their partner a complement over their lunch hour. Achieving these goals may require reducing care demands and emotional stressors by increasing the availability of respite care, family supports (e.g., paid providers to help with childcare and/or household tasks), and/or financial assistance to reduce time and emotional burdens experienced by parents. These goals do not need to be achieved through increasing couple alone time. Instead, they could be achieved by fostering positive and fun family-wide activities (i.e., involving not only partners, but also the child with ASD and other family members), and promoted through child-directed interventions (e.g., child’s social and language therapy provided in context of the family playing a game together)