‘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

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Radev, S., Freeth, M., & Thompson, A. R. (2023). ‘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), 1394-1404. https://doi.org/10.1177/13623613231212794

Publication date: 24 Nov 2023 Added to AutiHub: 6 Jul 2026 Type: Article Article language: English
Publisher source (DOI) Full text OpenAlex source

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Authors

Publication authors
3
Publication authors identified as autistic
1 / 3 (33.3%)
  1. Sarah Radev *
  2. Megan Freeth
  3. Andrew R. Thompson

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.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 2 Oct 2026 13:58.

Cited references
34
With a DOI
32
Without a DOI, from raw bibliography text
2
3 / 34 (8.8%) cited references include at least one author identified as autistic.
References with data to complete
1 / 34 (2.9%)
References with detected author names
34 / 34 (100.0%)
Without detected author names
0
Without a structured title
1
Without a stable identifier
2
References with raw author names still to review
0
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
135
From DOI or external metadata
135
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
0
50 / 135 (37.0%) names are linked to an author already present in AutiHub. 85 / 135 (63.0%) names are not yet linked.
Names linked to a person identified as autistic
6 / 135 (4.4%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 6 / 50 (12.0%). Distinct people identified as autistic: 6 / 128 (4.7%).
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