‘I’m sick of being the problem’: Autistic mothers’ experiences of interacting with schools for their autistic children
Authors: Rabba Aspasia Stacey , Smith Jodie , Hall Gabrielle , Alexander Vanessa , Batty Kate , Datta Poulomee , Goodall Emma , Heyworth Melanie , Lamb Siobhan , Lawson Wenn , Lilley Rozanna , Reid Katy , Syeda Najeeba , Pellicano Elizabeth 
Published: November 2024

Successful partnerships between families and schools can substantially improve children’s success in and out of school. Yet parents of autistic children often report considerable challenges with their children’s education. Almost no research, however, has examined autistic parents’ own experiences. We, therefore, sought the views and experiences of autistic parents’ interactions with schools for their autistic children. We conducted semi-structured interviews with 31 autistic mothers of autistic children engaged in education in Australia. We analysed the data using reflexive thematic analysis. Autistic mothers repeatedly expressed feeling like they were in a ‘war zone’, fighting ongoing battles to gain the necessary support for their autistic child and were ‘sick of being [viewed as] the problem’. They also felt that their expertise as parents – and experiential expertise as autistic parents – was often overlooked or ignored. All of this had negative effects on their and their children’s mental health. Despite these negative experiences, autistic mothers who had experienced positive interactions with schools highlighted the importance of mutual respect in establishing and maintaining successful school partnerships and how their own determination and self-advocacy helped to foster these relationships. This research sheds light on the critical ingredients of effective home–school partnerships for autistic families.

Lay abstract

Good relationships between families and schools make a difference to children’s learning – and the same goes for autistic children. But parents of autistic children often find it very stressful interacting with teachers and school staff. In this study, we focused on autistic parents of autistic children. We wanted to know about their experiences of interacting with schools and the impact these had on them and their children. We spoke to 31 autistic mothers of autistic children about their experiences. They told us that they felt they were constantly fighting with schools to get the support needed for their autistic children and compared it to like being in a ‘war zone’. They were ‘sick of being [viewed as] the problem’ and felt that their views and autistic expertise were not taken seriously by teachers and schools. This was damaging to their autistic children’s mental health as well as their own. Autistic mothers did share some positive experiences too. They spoke about the value of mutual respect and its impact on successful school partnerships. Autistic mothers also spoke about standing up for themselves and their children and how this advocacy and self-advocacy helped them to build better relationships with schools. This research showed how difficult it can be for autistic families to interact with teachers and schools and the impact this can have on the whole family. It also showed us that strong, trusting relationships between school and families are possible – when autistic parents feel safe, and when their knowledge and lived experience are taken seriously by educators.