“You Have a Lot of Work on Your Hands”: Unsupportive Social Interactions for Parents of Children with Autism

Background: Parents raising children with Autism Spectrum Disorders (Autism) report high stress that greatly affects their daily lives. Family Quality of Life (FQOL) refers to the ways in which a family member with a disability affects parents and siblings. Positive social supports can help to buffer against the strain associated with raising children with Autism. However, negative reactions that parents of children with Autism may receive from others have been less studied. Unsupportive Social Interactions (USI) refer to actions that are perceived as unhelpful or unwanted in the face of a stressful event. Very little research on USIs has been done in the context of parenting children with Autism. This concept is important to understand because negative or unsupportive responses may be more salient than positive social supports to parents’ well-being.

Objectives: The purpose of the present study is to examine how USIs affect parents of children with Autism. This study investigates the extent to which positive social support and USIs are associated with FQOL for parents of children with Autism.

Methods: A sample of 97 mothers and 82 fathers of children with Autism aged four to 11 years completed an online survey (data collection is ongoing). Participants were primarily biological parents, Caucasian, married, had a family income of over $75,000 per year, had completed post-secondary education, and had one child with Autism. The questionnaires pertained to demographic information, family quality of life, social support, unsupportive social interactions, and other variables as part of a larger study. A subset of participants (n =12 mothers and 11 fathers) gave qualitative responses during a phone interview.

Results: Preliminary results suggested that the adequacy and availability of social support from professionals, family, and friends were significantly positively correlated with FQOL in this sample. In addition, a significant negative correlation was found between USI and FQOL, where more experiences of USI were associated with lower FQOL. Themes related to parents’ experiences with USIs are described based on parents’ interview responses.

Conclusions: Although researchers and clinicians have focused on the relevance of positive social supports for parents of children with Autism, it is also important to consider the harmful effects of USIs. The findings of this study support the extant literature that social support is closely related to FQOL. A novel contribution is the finding that USIs negatively affect FQOL for parents of children with Autism. Parents’ qualitative responses illustrated similar findings. For example, one participant in this study described how a stranger in the grocery store said “you have a lot of work on your hands.” The concept of USIs has received little attention in Autism research and should be studied in more detail. In order to promote optimal FQOL for parents of children with Autism, clinicians should also attend to the negative experiences that parents may face and explore ways to reduce their impact. Practical implications of this research are described, including how fostering Autism awareness in the community may help reduce the frequency of USIs.