A meta-synthesis of how parents of children with autism describe their experience of advocating for their children during the process of diagnosis

Abstract

The diagnostic process for children with autism can be complex for parents to navigate as they advocate for their child in order to obtain answers to their concerns, and receive the subsequent support they need. Gaining an understanding of parents’ experiences during this process, will assist service providers in supporting families adequately. This systematic review was undertaken to consolidate in‐depth qualitative data from parents of their experience of advocating for their child with autism, during the process of diagnosis. A qualitative meta‐synthesis was conducted, whereby fifteen databases were systematically searched. Twenty‐two studies were identified and appraised using an adapted version of the Critical Appraisal Skills Programme tool. Data were synthesised into themes through the steps of review, meta‐aggregation, integration, and interpretation. The date range of the included studies spans 1999–2016. The voices of 1,178 parents are presented in this review describing their experiences in two overarching themes: “Pathway to diagnosis—Confusion and not feeling heard”; and “Pursuing diagnosis—Resilience and commitment.” Each one of these main themes had sub‐themes. Our findings highlight the intense emotional journey for parents during identification of their initial concerns and the formal process of diagnosis, and their perceptions of not being supported by others on this journey. This review illustrates the significant impact that positive experiences with first‐line professionals have during the process of diagnosis, and how these experiences lay the foundation for all future relationships with other service providers. As a result, awareness of parents’ experiences will assist service providers to reconsider their communication style, information sharing, provision of support and to incorporate parents’ contributions in facilitating a more streamlined and more supportive process of diagnosis.