Working toward agency among the autism community: A participatory action research study

The impact of autism spectrum disorders (ASD) is experienced in many ways as the prevelance rate continues to rise. The Center for Disease Control and Prevention (CDC) suggests that 1:110 children in the US has autism, consequently impacting rising rates of families. A review of research showed that these families experience a multitude of stressors. In addition, previous literature encompassed the history of ASD and the ways that evolving theories have impacted families over time. Little research was found that targeted insider knowledge or positive effects of ASD, included multiple members of the family, or addressed ways to engage families as active in addressing their concerns. The current study employed a Participatory Action Research (PAR) model in exploration of insider knowledges about autism and developing action based off of those knowledges. The research question was two-fold: What is the knowledge that insiders have about autism? and How can PAR principles position a professional to assist the autism community to come together, share insider knowledge, and create action? Ten participants took part in the project, including three mothers, three fathers, and three extended family members, as well as one autism representative. Participants engaged as co-researchers in gathering insider knowledge about how ASD impacts the entire family, reflecting on and evaluating insider knowledges, and finally developing an action plan that addressed their interests and needs. The knowledges uncovered in this project can provide insight to community members, professionals, and families about ways to help reduce negative effects related to ASD. The results yielded a clarification of knowledges rather than an emphasis on finding a voice. PAR allowed for participants to cultivate and develop ideas of interest. Comfort in shared experiences, engaging in new conversations, contributed to a sense of contribution to others that became the basis for action. The discussion reflects on the process of PAR the ways that insider knowledges can benefit the field of Marriage and Family and Therapy, as an alternative way to engage clients and possibly address specific topics or subcultures.