“There’s Competition Even Among the Parents of Neurodiverse Children” - Understanding the Dynamics of Social Support Groups for Parents of Autistic Children

With the rapid expansion of smart technologies, people using devices such as smartphones and tablets are becoming ubiquitous. This growth has also expanded communication methods, such as social media platforms, that can be utilized for seeking support. However, parents of autistic children often receive inadequate support from existing technology. In this paper, we report findings from a qualitative study with 14 parents of autistic children from five different countries. We analyzed these parents’ experience with receiving and utilizing social support, whether they consider received support adequate, challenges faced, and the types of support these parents seek. Our findings reveal a complex dynamic in the way parents of autistic children seek social support. For instance, the higher stress levels experienced by these parents motivate them to seek support from their families first. However, a lack of autism awareness among family members often leads them to seek support elsewhere, especially from online autism groups. Interestingly, unhealthy competition among parents of autistic children in many online autism groups led some parents to discontinue interacting in these groups and work independently. We provide guidelines for designing new interventions and offer guidelines to redesign existing technologies that may better align with the needs of parents of autistic children.