'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

Autism. 2024 Jun;28(6):1394-1404. doi: 10.1177/13623613231212794. Epub 2023 Nov 24.

Abstract

Becoming a parent is an important part of adult life for many people, including autistic people. Many parents of autistic children can find getting the right support for their children difficult. Knowledge is currently poor about how this is experienced by parents who are also autistic themselves. The main researcher is also an autistic parent to an autistic child and other experts by experience were consulted in the development of the study. Ten autistic mothers with autistic children in mainstream education were interviewed about their experiences of seeking support for their autistic children from services such as healthcare and education. Participants talked about finding the overall system being the main problem, rather than the individuals working in it, and about needing to fight to get the right support for their children. These are points that non-autistic parents have also raised before. Participants also talked about feeling judged and stigmatised for being autistic, and about struggling to manage sensory and communication difficulties, which is something that has not been talked about by non-autistic parents. Improving services to offer better support to autistic families is important and can be achieved through better training. This training should be developed and run by autistic adults and focus on positive aspects of autism, rather than negative.

Keywords: adults; advocacy; autism spectrum disorders; education services; health services; parents; qualitative research; schoolage children.

MeSH terms

  • Adult
  • Autistic Disorder* / psychology
  • Child
  • Child, Preschool
  • Female
  • Humans
  • Mainstreaming, Education
  • Male
  • Middle Aged
  • Mothers / psychology
  • Parents / psychology
  • Qualitative Research*
  • Social Stigma
  • Social Support