“Constantly overwhelmed and desperate for help”: Parents’ experiences of supporting their autistic child with mental health difficulties in the United Kingdom

Autistic children and young people are at increased risk of experiencing mental health difficulties, but often face delays or barriers to accessing support. While evidence exists regarding parents' experiences of supporting an autistic child, there is a lack of focus on parenting autistic children who are also experiencing mental health difficulties. This is despite the high likelihood of co-occurrence, the increased complexity this can bring, and the potential impact on the parents and their children. Thus, the present study aimed to explore parents' experiences of supporting their autistic child with mental health difficulties in the United Kingdom (UK). Mixed-methods surveys were completed by 300 parents/carers of autistic children who had previously sought help for their child's mental health difficulties. Qualitative data were extracted from open-text questions pertaining to parents' perceived impact of their children's mental health difficulties on all aspects of their life. Data were analysed using reflexive thematic analysis. Three themes, along with associated subthemes, were identified, namely 1) Deteriorating parental wellbeing, 2) The knock-on effect on the whole family, and 3) A lack of support. Findings underscore the significant challenges faced by parents, as they were often left to manage their child's deteriorating mental health without sufficient professional support. The emotional and physical toll on parents was thought to be exacerbated by long waiting times, inadequate support services, and a lack of understanding of autism within healthcare and educational systems. There is an urgent need for more neuroaffirmative, personalised approaches to supporting autistic children and their families, along with timely access to effective interventions. By ensuring earlier intervention and reducing systemic barriers, both the mental health of children and the wellbeing of their families can be significantly improved, ultimately fostering better outcomes for all involved.