Anxiety Problems Experienced by Autistic Children: Child and Parent Perspectives

Autistic people are at increased risk of psychological distress, particularly anxiety problems. Childhood anxiety problems can lead to various negative lifelong outcomes, including disrupted education and reduced quality of life. Working closely with an Expert Reference Group and co-researchers with lived experience of autism and parenting an autistic child, we explored the experience of autistic children's anxiety to inform autism-specific intervention development. We interviewed nine autistic children with anxiety problems and 10 parents. Interviews were analysed using Interpretative Phenomenological Analysis and Template Analysis. We report five themes: (a) Buffering the constant impact of anxiety; (b) Walking the cliff edge; (c) We're on our own here; (d) Being understood is the safest path and (e) Pursuing a journey of learning. These themes illustrate how anxiety problems can affect autistic children and their families. Key learnings for intervention development include (a) the potential value of delivering support through an established relationship with a safe, trusted adult; (b) the possible amplifying effects of the combination of environmental factors with sensory sensitivities on anxiety and (c) acknowledging the difficult balance for families between helping the child to manage in a neurotypical world, and finding ways to adjust the environment to better meet their child's needs.Lay AbstractAutistic children are more likely to experience problems with anxiety than non-autistic children, which can have lasting effects on their well-being and development. Understanding what anxiety problems feel like for autistic children and their parents can help create better support and interventions. In this study, a research team including autistic individuals, parents of autistic children and clinicians explored these experiences. We interviewed 10 parents and nine autistic children with anxiety problems. The interviews revealed five main themes: (a) Buffering the constant impact of anxiety; (b) Walking the cliff edge; (c) We're on our own here; (d) Being understood is the safest path and (e) Pursuing a journey of learning. These findings highlight the complex and ongoing impact of anxiety problems on autistic children and their families. We found that helpful support for these children may come from a trusted adult with a preexisting relationship, recognising how external factors and sensory sensitivities can make anxiety worse, and considering the experiences of children and families within systems that are not designed for autistic people. This study offers important insights that can guide the development of more effective and compassionate interventions for autistic children experiencing problems with anxiety.