Evidence map›Paper›PMID 39582183›Full record

ArticleAutism : the international journal of research and practice2025

'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 and 4 more

Abstract read
In one paragraph

Article in Autism : the international journal of research and practice, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

14 authors.

Aspasia Stacey RabbaMacquarie University, Australia.ORCID 0000-0003-4320-951X
Jodie SmithMacquarie University, Australia.ORCID 0000-0003-3528-0658
Gabrielle HallMacquarie University, Australia.
Vanessa AlexanderPositive Partnerships, Australia.ORCID 0009-0004-7124-8836
Kate BattyMacquarie University, Australia.
Poulomee DattaMacquarie University, Australia.
Emma GoodallPositive Partnerships, Australia.
Melanie HeyworthMacquarie University, Australia.
Siobhan LambMacquarie University, Australia.
Wenn LawsonMacquarie University, Australia.
Rozanna LilleyMacquarie University, Australia.
Katy ReidMacquarie University, Australia.
Najeeba SyedaPositive Partnerships, Australia.
Elizabeth PellicanoMacquarie University, Australia.ORCID 0000-0002-7246-8003

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

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 abstractGood 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.

Indexed as

Autistic DisorderMothersSchoolsAdultAustraliaChildFemaleHumansInterviews as TopicMaleMiddle AgedQualitative Researchautistic parentsautistic studentsparent–teacher partnershipsparticipatory researchschool experiences

Identifiers

PMID39582183
PMCPMC11967083

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.