'I'm sick of being the problem': Autistic mothers' experiences of interacting with schools for their autistic children.

Rabba, AS; Smith, J; Hall, G; Alexander, V; Batty, K; Datta, P; Goodall, E; Heyworth, M; Lamb, S; Lawson, W; Lilley, R; Reid, K; Syeda, N; Pellicano, E

'I'm sick of being the problem': Autistic mothers' experiences of interacting with schools for their autistic children.

Rabba, AS Smith, J Hall, G Alexander, V Batty, K Datta, P Goodall, E Heyworth, M Lamb, S Lawson, W Lilley, R Reid, K Syeda, N Pellicano, E

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Publisher:: SAGE Publications
Publication Type:: Journal Article
Citation:: Autism, 2024, 29, (4), pp. 13623613241297223
Issue Date:: 2024-11-24

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Field	Value	Language
dc.contributor.author	Rabba, AS
dc.contributor.author	Smith, J
dc.contributor.author	Hall, G
dc.contributor.author	Alexander, V
dc.contributor.author	Batty, K
dc.contributor.author	Datta, P
dc.contributor.author	Goodall, E
dc.contributor.author	Heyworth, M
dc.contributor.author	Lamb, S
dc.contributor.author	Lawson, W
dc.contributor.author	Lilley, R
dc.contributor.author	Reid, K
dc.contributor.author	Syeda, N
dc.contributor.author	Pellicano, E
dc.date.accessioned	2025-04-23T03:16:21Z
dc.date.available	2025-04-23T03:16:21Z
dc.date.issued	2024-11-24
dc.identifier.citation	Autism, 2024, 29, (4), pp. 13623613241297223
dc.identifier.issn	1362-3613
dc.identifier.issn	1461-7005
dc.identifier.uri	http://hdl.handle.net/10453/186978
dc.description.abstract	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.
dc.format	Print-Electronic
dc.language	eng
dc.publisher	SAGE Publications
dc.relation.ispartof	Autism
dc.relation.isbasedon	10.1177/13623613241297223
dc.rights	info:eu-repo/semantics/openAccess
dc.subject	1303 Specialist Studies in Education, 1701 Psychology, 1702 Cognitive Sciences
dc.subject.classification	Developmental & Child Psychology
dc.subject.classification	32 Biomedical and clinical sciences
dc.subject.classification	52 Psychology
dc.subject.mesh	Humans
dc.subject.mesh	Mothers
dc.subject.mesh	Female
dc.subject.mesh	Autistic Disorder
dc.subject.mesh	Schools
dc.subject.mesh	Male
dc.subject.mesh	Adult
dc.subject.mesh	Child
dc.subject.mesh	Australia
dc.subject.mesh	Qualitative Research
dc.subject.mesh	Middle Aged
dc.subject.mesh	Interviews as Topic
dc.subject.mesh	Humans
dc.subject.mesh	Mothers
dc.subject.mesh	Autistic Disorder
dc.subject.mesh	Qualitative Research
dc.subject.mesh	Schools
dc.subject.mesh	Adult
dc.subject.mesh	Middle Aged
dc.subject.mesh	Child
dc.subject.mesh	Australia
dc.subject.mesh	Female
dc.subject.mesh	Male
dc.subject.mesh	Interviews as Topic
dc.title	'I'm sick of being the problem': Autistic mothers' experiences of interacting with schools for their autistic children.
dc.type	Journal Article
utslib.citation.volume	29
utslib.location.activity	England
utslib.for	1303 Specialist Studies in Education
utslib.for	1701 Psychology
utslib.for	1702 Cognitive Sciences
utslib.copyright.status	open_access	*
pubs.consider-herdc	true
dc.rights.license	This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0). To view a copy of this license, visit https://creativecommons.org/licenses/by/4.0/
dc.date.updated	2025-04-23T03:16:18Z
pubs.issue	4
pubs.publication-status	Published
pubs.volume	29
utslib.citation.issue	4

Abstract:

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.

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http://hdl.handle.net/10453/186978