Experiences of Post-Diagnostic Support for Children and Young People on the Autism Spectrum

Abstract

There is considerable research about individuals’ negative experiences of the process of obtaining an autism diagnosis (Crane et al., 2018), however less is known about experiences of post-diagnostic support. A systematic review of the literature showed a gap for research focused on people’s experiences of post-diagnostic support for children and young people on the autism spectrum. A qualitative approach was taken, and an inductive thematic analysis was chosen to investigate this topic. Eight parents, eleven school staff, and four young people on the autism spectrum, all from one London borough, were interviewed about their experiences, either individually or in a focus group. Thematic analysis of the data revealed five main themes: a lack of knowledge and understanding about autism, a system overwhelmed by unmet needs, the impact of communication on relationships, negative impacts on quality of life, and hope for the future (developing the system to make it work). The overwhelming finding was of a significant lack of post-diagnostic support, and a system poorly designed to support children on the autism spectrum and their families. Findings are discussed in the context of the ecological systems model (Bronfenbrenner, 1992), and in relation to previous research. Important clinical implications and recommendations are presented with the aim of improving post-diagnostic support for children and young people on the autism spectrum, and their families, in the future.