‘I’m sick of being the problem’: autistic mothers’ experiences of interacting with schools for their autistic children

Aspasia Stacey Rabba*, Jodie Smith, Gabrielle Hall, Vanessa Alexander, Kate Batty, Poulomee Datta, Emma Goodall, Melanie Heyworth, Siobhan Lamb, Wenn Lawson, Rozanna Lilley, Katy Reid, Najeeba Syeda, Elizabeth Pellicano

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

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.

Original languageEnglish
Number of pages13
JournalAutism
DOIs
Publication statusE-pub ahead of print - 24 Nov 2024

Keywords

  • autistic parents
  • autistic students
  • parent–teacher partnerships
  • participatory research
  • school experiences

Cite this