Parents’ views and experiences of talking about autism with their children

Abstract

The way an autism diagnosis is disclosed to parents has been found to play a crucial role in their acceptance of, and the way they cope with, their child’s diagnosis. Yet, research into parents’ subsequent experiences of disclosing a diagnosis to their children, and talking to their families about autism more generally, is limited. Using an online survey, the current study examined 558 parents’ experiences of talking about autism with their autistic and non-autistic children. Results demonstrated that most parents ( n = 379, 67.9%) had told their autistic children about their diagnosis. Despite few parents ( n = 163, 20.4%) receiving advice or support regarding the disclosure of the diagnosis, those that had disclosed felt satisfied with the process ( n = 319, 84.2%) and felt confident in talking about autism with their children ( n = 339, 92.4%). Those who had not told their autistic children about the diagnosis largely planned to discuss this with their child in the future ( n = 100, 73.5%), felt confident in doing so ( n = 95, 70.9%) and were satisfied with their decision ( n = 95, 70.4%). Analysis of open-ended data, using thematic analysis, highlighted the importance of openness and the need to tailor explanations to individual children’s needs, while acknowledging that disclosure could often be challenging for parents.

How is autistic identity in adolescence influenced by parental disclosure decisions and perceptions of autism?

“…A recent review of the small body of research examining the process of parental disclosure to an autistic child found that some parents may be reluctant to disclose a diagnosis to their children for this reason (Smith et al, 2018). The aforementioned large study that surveyed parents about their experiences discussing autism with their autistic child found that 75% of parents who had not yet disclosed a diagnosis felt their child would not understand their diagnosis (Crane et al, 2019). In the current study, more educated mothers appeared to be less likely to speak openly with their child about their child’s diagnosis.…”

“…Lack of diversity has also been an issue in past work in this field (e.g. Crane et al, 2019). Aligning with prior work about disclosure and identity development (Crane et al, 2019; Humphrey & Lewis, 2008; Jones et al, 2013, 2015; Mogensen & Mason, 2015; Smith et al, 2018), statistical analyses were not used to determine if the current findings are generalizable.…”

“…While this study addresses a gap in the literature, our sample was drawn from a single While our sample of adolescents represented a range of races and ethnicities, a disproportionate number of mothers held at least a bachelor's degree, with many holding a doctorate degree (Table 1), which is not representative of the general population. Lack of diversity has also been an issue in past work in this field (e.g., Crane et al, 2019). Aligning with prior work about disclosure and identity development (Crane et al, 2019;Humphrey & Lewis, Jones et al, 2013;Jones et al, 2015;Mogensen & Mason, 2015;Smith et al, 2018), statistical analyses were not used to determine if the current findings are generalizable.…”

“…More recently, an online survey with parents of autistic youth in the United Kingdom ( N = 558) revealed that most participants had disclosed their child’s autism diagnosis to the child (Crane et al, 2019). Many parents described valuing an early and gradual approach to disclosing and talking about autism, respecting their child’s right to know about their own diagnosis, and feeling that knowing about one’s diagnosis may be empowering and critical for self-understanding.…”

“…Research has found that the mental health and development of autistic children is highly vulnerable to parents’ distress (Park et al, 2013; Totsika et al, 2015; Zaidman-Zait et al, 2014), indicating that parents’ constructive interpretation of an autism diagnosis may be critical. However, parents often struggle with the process of deciding if, when, and how to tell their child about their child’s autism (Crane et al, 2019; Finnegan et al, 2014). Lack of parental disclosure could contribute to many autistic adolescents’ apparent lack of self-awareness of their autism (Green et al, 2000), as many parents may not disclose until adolescence or adulthood.…”