‘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
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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.

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Cited references
34
Total cited references integrated for this publication.
Cited references with an identified autistic author
2 / 34 (5.9%)
Cited author occurrences identified as autistic
4 / 135 (3.0%)
Among occurrences linked to AutiHub author records: 4 / 48 (8.3%). Distinct cited authors identified as autistic: 4 / 128 (3.1%).
Cited author occurrences linked to AutiHub author records
48 / 135 (35.6%)
Distinct linked cited authors: 42 / 128 (32.8%)
Linked cited-author occurrences not identified as autistic
44 / 48 (91.7%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 44 / 135 (32.6%). Distinct linked cited authors not identified as autistic: 38 / 42 (90.5%).
  1. Ousseny Zerbo , Maria L Massolo , Yinge Qian , Lisa A. Croen (2015). A Study of Physician Knowledge and Experience with Autism in Adults in a Large Integrated Healthcare System . Journal of Autism and Developmental Disorders, 45(12), 4002-4014. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-015-2579-2 OpenAlex: https://openalex.org/W1258271155
    Crossref OpenAlex OpenCitations
  2. González Moreno, Andrés Santiago (2013). Diagnostic and Statistical Manual of Mental Disorders . American Psychiatric Association.
    Type: Book DOI: 10.1176/appi.books.9780890425596 OpenAlex: https://openalex.org/W4247665917
    Crossref OpenAlex OpenCitations
  3. Felicity Sedgewick , Vivian Hill , Elizabeth Pellicano (2018). Parent perspectives on autistic girls’ friendships and futures . Autism & Developmental Language Impairments, 3. SAGE Publications.
    Type: Article DOI: 10.1177/2396941518794497 OpenAlex: https://openalex.org/W2888174689
    Crossref OpenAlex OpenCitations
  4. James Briggs (2010). Interpretative Phenomenological Analysis: Theory, Method and Research . QMiP Bulletin, 1(10), 44-46. British Psychological Society.
    Type: Article DOI: 10.53841/bpsqmip.2010.1.10.44 OpenAlex: https://openalex.org/W1607118314
    OpenAlex
  6. Jonathan A. Smith , Isabella E. Nizza (2022). Essentials of interpretative phenomenological analysis. American Psychological Association.
    Type: Book DOI: 10.1037/0000259-000 OpenAlex: https://openalex.org/W3176876566
    Crossref OpenCitations
  7. Sven Sandin , Paul Lichtenstein , Ralf Kuja-Halkola , Henrik Larsson , Christina M. Hultman , Abraham Reichenberg (2014). The Familial Risk of Autism . JAMA, 311(17), 1770. American Medical Association (AMA).
    Type: Article DOI: 10.1001/jama.2014.4144 OpenAlex: https://openalex.org/W1963736913
    Crossref OpenAlex OpenCitations
  8. K. Boshoff , D. Gibbs , R. L. Phillips , L. Wiles , L. Porter (2016). Parents' voices: ‘why and how we advocate’. A meta‐synthesis of parents' experiences of advocating for their child with autism spectrum disorder . Child: Care, Health and Development, 42(6), 784-797. Wiley.
    Type: Article DOI: 10.1111/cch.12383 OpenAlex: https://openalex.org/W2499782818
    Crossref OpenAlex OpenCitations
  9. Tania Celia , Wyona Freysteinson , Nina Fredland , Patricia Bowyer (2020). Battle weary/battle ready: A phenomenological study of parents' lived experiences caring for children with autism and their safety concerns . Journal of Advanced Nursing, 76(1), 221-233. Wiley.
    Type: Article DOI: 10.1111/jan.14213 OpenAlex: https://openalex.org/W2978759509
    Crossref OpenAlex OpenCitations
  10. Debra Umberson , Tetyana Pudrovska , Corinne Reczek (2010). Parenthood, Childlessness, and Well‐Being: A Life Course Perspective . Journal of Marriage and Family, 72(3), 612-629. Wiley.
    Type: Article DOI: 10.1111/j.1741-3737.2010.00721.x OpenAlex: https://openalex.org/W1978000708
    Crossref OpenAlex OpenCitations
  11. Meghan M. Burke , Robert M. Hodapp (2014). Relating Stress of Mothers of Children With Developmental Disabilities to Family–School Partnerships . Intellectual and Developmental Disabilities, 52(1), 13-23. Informa UK Limited.
    Type: Article DOI: 10.1352/1934-9556-52.1.13 OpenAlex: https://openalex.org/W2158075420
    Crossref OpenAlex OpenCitations
  12. A. L. Pohl , S. K. Crockford , M. Blakemore , Carrie Allison , Simon Baron-Cohen (2020). A comparative study of autistic and non-autistic women’s experience of motherhood . Molecular Autism, 11(1), 3. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s13229-019-0304-2 OpenAlex: https://openalex.org/W3000239743
    Crossref OpenAlex OpenCitations
  13. Winnie Lau , Candida C. Peterson (2011). Adults and children with Asperger syndrome: Exploring adult attachment style, marital satisfaction and satisfaction with parenthood . Research in Autism Spectrum Disorders, 5(1), 392-399. Elsevier BV.
    Type: Article DOI: 10.1016/j.rasd.2010.06.001 OpenAlex: https://openalex.org/W1986288125
    Crossref OpenAlex OpenCitations
  14. Eilidh Cage , Jessica Di Monaco , Victoria Newell (2018). Experiences of Autism Acceptance and Mental Health in Autistic Adults . Journal of Autism and Developmental Disorders, 48(2), 473-484. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-017-3342-7 OpenAlex: https://openalex.org/W2766434912
    Crossref OpenAlex OpenCitations
  15. Amber-Sophie Dugdale , Andrew R. Thompson , Alexandra Leedham , Nigel Beail , Megan Freeth (2021). Intense connection and love: The experiences of autistic mothers . Autism, 25(7), 1973-1984. SAGE Publications.
    Type: Article DOI: 10.1177/13623613211005987 OpenAlex: https://openalex.org/W3154030996
    Crossref OpenAlex OpenCitations
  16. Michael Larkin , Simon Watts , Elizabeth Clifton (2006). Giving voice and making sense in interpretative phenomenological analysis . Qualitative Research in Psychology, 3(2), 102-120. Informa UK Limited.
    Type: Article DOI: 10.1191/1478088706qp062oa OpenAlex: https://openalex.org/W2082194182
    Crossref OpenAlex OpenCitations
  17. Gemma M. Griffith , Vasiliki Totsika , Susie Nash , Richard P. Hastings (2012). ‘I just don’t fit anywhere’: support experiences and future support needs of individuals with Asperger syndrome in middle adulthood . Autism, 16(5), 532-546. SAGE Publications.
    Type: Article DOI: 10.1177/1362361311405223 OpenAlex: https://openalex.org/W2118012655
    Crossref OpenAlex OpenCitations
  18. Jane Pei-Chen Chang , Meng-Chuan Lai , Miao-Chun Chou , Chi-Yung Shang , Yen-Nan Chiu , Wen-Che Tsai et al. (2019). Maternal and Family Processes in Different Subgroups of Youth with Autism Spectrum Disorder . Journal of Abnormal Child Psychology, 47(1), 177-194. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10802-018-0404-z OpenAlex: https://openalex.org/W2788714756
    Crossref OpenAlex OpenCitations
  19. S. Katherine Nelson , Kostadin Kushlev , Tammy English , Elizabeth W. Dunn , Sonja Lyubomirsky (2013). In Defense of Parenthood . Psychological Science, 24(1), 3-10. SAGE Publications.
    Type: Article DOI: 10.1177/0956797612447798 OpenAlex: https://openalex.org/W2127251891
    Crossref OpenAlex OpenCitations
  20. Laura Crane , Lok Man Lui , Jade Davies , Elizabeth Pellicano (2021). Autistic parents’ views and experiences of talking about autism with their autistic children . Autism, 25(4), 1161-1167. SAGE Publications.
    Type: Article DOI: 10.1177/1362361320981317 OpenAlex: https://openalex.org/W3120478003
    Crossref OpenAlex OpenCitations
  21. Ella Perry , Will Mandy , Laura Hull , Eilidh Cage (2022). Understanding Camouflaging as a Response to Autism-Related Stigma: A Social Identity Theory Approach . Journal of Autism and Developmental Disorders, 52(2), 800-810. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-021-04987-w OpenAlex: https://openalex.org/W3150043110
    Crossref OpenAlex OpenCitations
  23. Beata Tick , Patrick Bolton , Francesca Happé , Michael Rutter , Frühling Rijsdijk (2016). Heritability of autism spectrum disorders: a meta‐analysis of twin studies . Journal of Child Psychology and Psychiatry, 57(5), 585-595. Wiley.
    Type: Article DOI: 10.1111/jcpp.12499 OpenAlex: https://openalex.org/W2207583083
    Crossref OpenAlex OpenCitations
  24. Jennifer Kirchner , Willibald Ruch , Isabel Dziobek (2016). Brief Report: Character Strengths in Adults with Autism Spectrum Disorder Without Intellectual Impairment . Journal of Autism and Developmental Disorders, 46(10), 3330-3337. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-016-2865-7 OpenAlex: https://openalex.org/W2497430009
    Crossref OpenAlex OpenCitations
  25. Michael Larkin (2012). Qualitative research methods in mental health and psychotherapy: A guide for students and practitioners . Qualitative research methods in mental health and psychotherapy: A guide for students and practitioners, 99.
    Type: Other
    Crossref
  26. Hanurawan, Fattah (2013). Qualitative research in psychology . In Advanced Research Methods in Psychology (pp. 175-182). Routledge.
    Type: Book chapter DOI: 10.4324/9780203759851-20 OpenAlex: https://openalex.org/W2525015314
    OpenAlex
  27. Kelda Sproston , Felicity Sedgewick , Laura Crane (2017). Autistic girls and school exclusion: Perspectives of students and their parents . Autism & Developmental Language Impairments, 2, 239694151770617. SAGE Publications.
    Type: Article DOI: 10.1177/2396941517706172 OpenAlex: https://openalex.org/W2613788039
    Crossref OpenAlex OpenCitations
  28. Elise Marriott , James Stacey , Olivia Mary Hewitt , Nienke E. Verkuijl (2022). Parenting an Autistic Child: Experiences of Parents with Significant Autistic Traits . Journal of Autism and Developmental Disorders, 52(7), 3182-3193. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-021-05182-7 OpenAlex: https://openalex.org/W3183669747
    Crossref OpenAlex OpenCitations
  29. David Mason , Barry Ingham , Heather Birtles , Cos Michael , Clare Scarlett , Ian A. James et al. (2021). How to improve healthcare for autistic people: A qualitative study of the views of autistic people and clinicians . Autism, 25(3), 774-785. SAGE Publications.
    Type: Article DOI: 10.1177/1362361321993709 OpenAlex: https://openalex.org/W3159192570
    Crossref OpenAlex OpenCitations
  30. Sandy Thompson-Hodgetts , Chantal Labonte , Rinita Mazumder , Shanon Phelan (2020). Helpful or harmful? A scoping review of perceptions and outcomes of autism diagnostic disclosure to others . Research in Autism Spectrum Disorders, 77, 101598. Elsevier BV.
    Type: Article DOI: 10.1016/j.rasd.2020.101598 OpenAlex: https://openalex.org/W3038469061
    Crossref OpenAlex OpenCitations
  31. Sara Taylor , Samantha Steeman , Brielle N. Gehringer , Holly C. Dow , Allison Langer , Eric Rawot et al. (2021). Heritability of quantitative autism spectrum traits in adults: A family‐based study . Autism Research, 14(8), 1543-1553. Wiley.
    Type: Article DOI: 10.1002/aur.2571 OpenAlex: https://openalex.org/W3177626315
    Crossref OpenAlex OpenCitations
  32. Smith J. A. (2004). bibr23-13623613231212794 Qualitative Research in Psychology, 1, 39.
    Type: Other
    Crossref
  33. Smith J. A. (2009). Interpretative phenomenological analysis: Theory, method and research . Interpretative phenomenological analysis: Theory, method and research.
    Type: Other
    Crossref
  34. Kate Doran , David Harper , Andrew R. Thompson (2013). Qualitative research methods in mental health and psychotherapy: A guide for students and practitioners . QMiP Bulletin, 1(15), 47-49. British Psychological Society.
    Type: Article DOI: 10.53841/bpsqmip.2013.1.15.47 OpenAlex: https://openalex.org/W4315840497
    OpenAlex