‘I’m not just being difficult . . . I’m finding it difficult’: a qualitative approach to understanding experiences of autistic parents when interacting with statutory services regarding their autistic child

The experiences of autistic parents when interacting with statutory services for their autistic children is not well understood. This study investigates the experiences of autistic parents’ interactions with statutory services, including education and healthcare, in relation to their autistic children. Interpretative Phenomenological Analysis was used to investigate their experiences. Ten autistic mothers of autistic children in mainstream education completed semi-structured interviews, which were co-developed with autistic parents. Two superordinate themes were developed: (1) The wider system is the problem and (2) Feeling judged and stigmatised. While Theme 1 demonstrates some similarities in the experiences of autistic parents to that of non-autistic parents in previous studies, theme 2 is unique to autistic parents who may feel that they are being treated differently. These themes indicate the importance of training encouraging a strength-based rather than deficit-based understanding of autism. Participants highlighted the wider system is the problem rather than individual professionals, and that it places some families at a disadvantage.