Parents' experiences of navigating the health and education systems for their autistic children: from assessment to school placement

A systematic literature review of the qualitative research was completed on parents’ experiences of having their children identified as autistic. Informed by bioecological theory, the aim of the research was to ascertain parents’ experiences of having their children identified as autistic and their perceptions of the education system. Since the focus was on parents’ experiences, qualitative methods were appropriate. Semi-structured interviews were conducted with a total of seven parents at three points in time. Phase 1 interviews took place in the summer before the children transferred to primary school. Interviews during phases 2 and 3 were carried out during the children’s first and final terms of that school year. Seventeen interviews were completed (phase 1 = 7, phase 2 = 6, phase 3 = 4), and analysed using reflexive thematic analysis. Parents need understanding and support during their children's identification process and early education. Parents encountered difficulties accessing an assessment and school placement for their children. They reported feeling alone and highlighted the need for accurate information. Parents described parent-professional relationships, relaying their interactions with professionals within the health and education systems. In addition to systemic changes, ways of supporting parents as they navigate the health and education systems for their children were identified. The implications of the findings for the professional practice of educational psychologists are discussed. Particular attention is paid to assessment, consultation, intervention, training, systemic approach, and research.