Experiences of Autistic Parents, from Conception to Raising Adult Children: A Systematic Review of the Literature

Background: The objective of this review was to explore autistic experiences of parenthood, as described by autistic people, from conception to relationships with adult children. In addition, we sought to identify whether particular aspects of parenting and/or particular groups of parents are underrepresented in the already sparse literature on autistic parenting.Methods: We searched 10 key databases for articles that reported data on the perspectives and/or experiences of autistic people (formally diagnosed or self-identifying) at any stage of the parenting journey. Following the initial search, we undertook an iterative process of forward and backward searching until no additional relevant articles were identified.Results: We identified a total of 167 articles and included 44 articles in the review following title and abstract review and full-text review. This consisted of four review articles, 12 articles that reported on quantitative studies, and 28 that reported on qualitative studies, with 28 of the 44 included articles published in the past 3 years. Communication challenges were highlighted across the majority of the studies, particularly in relation to communication with health care and other services in relation to participants' children. Sensory issues associated with pregnancy, childbirth, and parenting were also common themes. However, studies also identified strengths of autistic parents including empathy with their child(ren), and a high degree of focus and commitment to child and family well-being. The majority of study participants were mothers, White, and parenting babies or young children.Conclusions: A consistent theme across the studies was the external nature of many of the challenges of autistic parenting and the internal nature of many of the strengths. It is perhaps not being an autistic parent that is in itself challenging, but rather the way that autistic parents are (mis)understood and (un)supported by systems designed for neurotypical parents. Community Brief Why is this an important issue? Research into "autism" and "parenting" largely focuses on the experiences of non-autistic parents of autistic children. There is far less research on the experiences of autistic parents. It is likely that autistic people have different parenting experiences than non-autistic people. Previous literature reviews have focused mainly on pregnancy, childbirth, and infant feeding. That does not tell us what happens to autistic parents when their children get older. What was the purpose of this study? We wanted to understand what has been published in the literature about experiences of parenthood, as described by autistic people. We wanted to know what questions were being asked in the research, who was asking them, and who they were asking. We also wanted to know whether the research was looking at the strengths of autistic parents, and not just their challenges. What did the researchers do? The autistic-led research team searched academic databases for articles that reported autistic people's parenting experiences. We only included articles that had autistic parents' voices, not other people talking about them. When we had found the relevant articles from the databases, we checked their reference lists for earlier articles. We also checked other databases to see whether more recent articles had been written that mentioned the ones we had found. What were the results of the study? We found 167 articles. We excluded 113 after reading the titles and abstracts and another 26 after we read the full articles. We included a total of 44 articles in the review. There has been a considerable increase in research into autistic parenting in recent years, with 28 of the 44 articles published in the past 3 years. Much of the research focuses on pregnancy, childbirth, infant feeding, and raising young children. There is less research on parenting older children or adults. The research identifies common challenges for autistic parents, including sensory issues and communication barriers. Autistic parents have difficulty communicating with health professionals and experience stigma and misunderstanding. There is less research into the strengths of autistic parents. The research that does exist consistently reports evidence of high levels of empathy, commitment to their children's well-being, and positive parent-child relationships. What do these findings add to what was already known? These findings bring together the limited research on the experiences, and particularly the strengths, of autistic parents. They also demonstrate the significant gaps in the current research, including the experiences of autistic fathers, parents who do not identify as mothers/women or fathers/men, non-White autistic parents, parents of older children, and studies specifically focusing on parenting strengths. What are potential weaknesses in the study? The small number of studies limited our ability to draw conclusions about some things. Our interpretations of the research findings are influenced by our own perceptions and lived experiences. How will these findings help autistic adults now or in the future? This review creates a starting point for increasing our understanding of autistic parents' experiences. Importantly, it demonstrates that autistic parents are different from, not "less than" or "worse than," non-autistic parents.