The rewards & challenges of raising a child with a disability: Identifying pathways to growth

Background: Despite facing significant challenges such as distress and grief, parents of children with ASD have been shown to adapt to their circumstances and many exhibit positive outcomes such as resilience and personal growth. To date, this dual experience of distress and growth in parents is not well understood. Aim: By using a health-promoting paradigm, this study aimed to gather information on both the rewards and challenges experienced by parents of children with ASD; and based on this information, to co-author recommendations for policy change with parents participating in the study. Method: Participants included 12 parents (fathers = 3, mothers = 9) of a child with ASD (0-17 years old). Semi-structured interviews were conducted at two time points, one year apart. The final interview included the co-authoring of policy recommendations. All interviews were analysed using Interpretive Phenomenological Analysis. Results: Preliminary analysis revealed four superordinate themes: Impact of the disability news/diagnosis; ongoing challenges; positive outcomes and growth; coping strategies and resources. Each of these superordinate themes is comprised of a number of substituent themes, which inform policy recommendations. Discussion: While parents reported significant service challenges and levels of distress, they also exhibited personal growth. Parents endorsed a number of recommendations for policy and practice as the roll out of the NDIS moves forward. It is hoped that this data can be used to inform policy and reduce unnecessary stressors, while enhancing opportunities for growth in parents and positively impact the lives of children with ASD. Key Learning Outcomes: Feasible suggestions for policy and practice, such as the vital role that clear and respectful communication from professionals have on the mental health of parents; the need for information and support leading up to and following diagnosis; and the potential for resilience and growth in parents to be communicated by mental health professionals.