‘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

Radev, Sarah, Freeth, Megan and Thompson, Andrew R. ORCID: https://orcid.org/0000-0001-6788-7222 2024. ‘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 28 (6) , pp. 1394-1404. 10.1177/13623613231212794

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Abstract

The experiences of autistic parents when interacting with statutory services for their autistic children is not well understood. This study investigates the experiences of autistic parents’ interactions with statutory services, including education and healthcare, in relation to their autistic children. Interpretative Phenomenological Analysis was used to investigate their experiences. Ten autistic mothers of autistic children in mainstream education completed semi-structured interviews, which were co-developed with autistic parents. Two superordinate themes were developed: (1) The wider system is the problem and (2) Feeling judged and stigmatised. While Theme 1 demonstrates some similarities in the experiences of autistic parents to that of non-autistic parents in previous studies, theme 2 is unique to autistic parents who may feel that they are being treated differently. These themes indicate the importance of training encouraging a strength-based rather than deficit-based understanding of autism. Participants highlighted the wider system is the problem rather than individual professionals, and that it places some families at a disadvantage. Lay 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.

Item Type:	Article
Date Type:	Publication
Status:	Published
Schools:	Psychology
Publisher:	SAGE Publications
ISSN:	1362-3613
Date of First Compliant Deposit:	18 January 2024
Date of Acceptance:	20 October 2023
Last Modified:	08 Jul 2024 11:15
URI:	https://orca.cardiff.ac.uk/id/eprint/165656

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