Autistic Mothers of Autistic Children: A Preliminary Study in an Under-Researched Area.

Abstract

Much research exists on the mental health and well-being of parents of autistic children; however, parents who are themselves autistic have received little attention in the literature. We aimed to compare parenting stress and family outcomes in mothers who do, and do not, identify as being autistic. We matched 20 mothers who identified as being autistic to 20 mothers who do not identify as being autistic on variables associated with parental well-being: child externalizing behaviors, score on the Social Communication Questionnaire, child adaptive functioning, family income, and child and maternal age. All mothers had at least one autistic child. Outcome variables were family outcomes (Family Outcome Survey-Revised) and parenting stress (Parent Stress Index 4-Short Form). Paired t-tests were used to compare scores between the two samples. There were no statistical differences in achievement of family outcomes between the autistic and nonautistic mothers. The small effect size on Family Outcome 4 may suggest that autistic mothers develop stronger support networks, but as a statistical comparison for this item nonsignificant, this should be interpreted with caution. Autistic and nonautistic mothers reported equally high levels of parenting stress. Further research with larger samples is required to explore this under-researched area. Such research would be of value to understand any interaction between parental and child autism characteristics, well-being, and parenting. This could then inform development of supports, which can be tailored for each child's family. Why was this research done?: Despite decades of research exploring the well-being and mental health of parents of autistic children, the experience of autistic adults with autistic children has not been researched in detail. In fact, we could find less than five research studies on the topic.What was the purpose of the study?: We wanted to do some preliminary work in the area and look at whether parent well-being or family outcomes are similar or different between autistic and nonautistic mothers of autistic children.What did the researchers do?: We are part of a team of researchers working on a larger study on a different topic. As part of this study, we asked parents about their own experiences and well-being, which included questions on whether or not the parents identify as autistic. This meant that within this larger study, there were the data to look at parent and family outcomes and see if they differ depending on whether or not the mothers themselves identified as being autistic.To do this, we went to the large data set and first identified the mothers who identified as being autistic; this was 20 mothers. Then, one of the researchers (M.S.) carefully matched the 20 autistic mothers to 20 mothers who did not identify as autistic (nonautistic mothers) on a number of areas that previous research has linked with parent and family well-being and outcomes. Trying to make the two groups as similar as possible in the areas shown to impact parent and family outcomes means that we can be more confident that any differences between the two groups are due to the one thing that is purposeful: whether or not the mothers were autistic.What were the results of the study?: We found that in general, parent well-being and family outcomes did not differ between the two groups.What were the potential weaknesses of the study?: The small sample size and the lack of detailed knowledge around parental relationship status and ethnicity mean that it is not possible to assume that these results represent the wider population. We also cannot be sure that mothers who identified as nonautistic were definitely not autistic (i.e., they may have been autistic but as yet undiagnosed).How will these findings help autistic adults now or in the future?: We hope that this study will be a platform to inspire future research in this area, using different research methods (interviews, questionnaires) to learn from the lived experience of autistic mothers. This can provide a way for nonautistic parents, researchers, and professionals to learn from the experience and skills of autistic mothers and potentially inform future practice.