Coming to understand the child has autism: A process illustrating parents’ evolving readiness for engaging in care

Abstract

We report results from a large qualitative study regarding the process of parents coming to understand the child has autism starting from the time of initial developmental concerns. Specifically, we present findings relevant to understanding how parents become motivated and prepared for engaging in care at this early stage. The study included primary data from 45 intensive interviews with 32 mothers and 9 expert professionals from urban and rural regions of Ontario, Canada. Grounded theory methods were used to guide data collection and analysis. Parents’ readiness (motivation and capacity) for engagement develops progressively at different rates as they follow individual paths of meaning making. Four optional steps account for their varied trajectories: forming an image of difference, starting to question the signs, knowing something is wrong, and being convinced it’s autism. Both the nature of the information and professional help parents seek, and the urgency with which they seek them, evolve in predictable ways depending on how far they have progressed in understanding their child has autism. Results indicate the need for sensitivity to parents’ varying awareness and readiness for involvement when engaging with them in early care, tailoring parent support interventions, and otherwise planning family-centered care pathways. Lay Abstract What is already known about the topic? Parents of children with autism often learn about their child’s autism before diagnosis and can spend long periods seeking care (including assessment) before receiving a diagnosis. Meanwhile, parents’ readiness to engage in care at this early stage can vary from parent to parent. What this paper adds? This study revealed how parents come to understand their child has autism—on their own terms, rather than from just talking to professionals. It also explained how parents’ growing awareness of their child’s autism leads them to feel more motivated to engage in care by seeking information and pursuing services. Four “optional steps” described how parents’ growing readiness to engage in care at this early stage can vary, depending on their personal process. Implications for practice, research, or policy The results suggest ways that professionals can be more sensitive (a) to parents’ varying awareness of autism and (b) to their varying readiness for being involved in early care. They also suggest ways to tailor parent supports to their individual situation and design care that is more family centered. Not all parents want high levels of involvement. Depending on their personal process, some parents may need care and support that is directed at them before feeling ready for professionals to engage them in care directed at the child.

Pivotal Response Treatment (PRT) - Parent Group Training for Young Children with Autism Spectrum Disorder: A Qualitative Study on Perspectives of Parents

“…These results are consistent with previous research describing the internal process that parents may experience after a diagnosis ASD, from avoidance to accepting and acting on the possibility of ASD in the first place, to feelings of grief and loss, and subsequently to acceptance of the lifelong needs of their children (e.g. Gentles et al, 2020 ; Russell & Norwich, 2012 ).…”

Autism-specific parenting self-efficacy: An examination of the role of parent-reported intervention involvement, satisfaction with intervention-related training, and caregiver burden

“…Parents of children with ASD face disproportionate levels of stress in their role as caregivers (Hayes & Watson, 2013;Parker et al, 2020) and are increasingly expected to serve as partners to therapeutic intervention providers (Gentles et al, 2020;Hastings & Symes, 2002;Schreibman et al, 2015). This study provides preliminary evidence of a positive relationship between perceived parental involvement in therapy, satisfaction with intervention-related training, and PSEa, independent of a child's severity level or language ability.…”

“…Many interventions, particularly for young children with ASD, also rely heavily on "parents as partners" (Estes et al, 2019;Hastings & Symes, 2002;Pickles et al, 2016;Vibert et al, 2020). And although the benefits of parent-mediated intervention in educational and therapeutic settings are well-established (Garbacz et al, 2016;Matson et al, 2009), the challenge of participating in and coordinating these services creates an additional level of intervention-based complexity for parents (Gentles et al, 2020;Schreibman et al, 2015). Understanding the intervention and child/family factors that promote parenting self-efficacy for parents of children with ASD is important in better supporting parents and families through well-considered, family-centered, and efficacy-based, intervention design (Iadarola et al, 2018;Karst & Van Hecke, 2012;Keen et al, 2010;Kuhn & Carter, 2006;Ooi et al, 2016).…”

“…Conversely, the extent of this involvement in intervention may also offer an opportunity for psychosocial support, and the kinds of mastery experiences that can build PSEa. Kuhn and Carter (2006) characterize intervention as not only a space for child-centered skill development but also as an opportunity for parents to process the pressures and complex emotions associated with navigating their child's diagnosis and care (see also Chong & Kua, 2017;Gentles et al, 2019Gentles et al, , 2020Karst & Van Hecke, 2012). From this perspective, a broader goal of intervention is to build parental resilience and resourcefulness as a means of supporting child and family well-being (Ylvén et al, 2006).…”

User Interface and User Experience Design of Family Intervention Application for Parents of Children with Autism

“…It was further explained that the need for further research on the role of parents as an intervention model. Parents have a role in preparing and involving themselves in child interventions and planning family-centered treatment or interventions [10].…”