An exploration of the relational experiences of a parent being diagnosed as autistic after a child’s diagnosis with autism
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Abstract
This article is a retelling of the stories emerging from my dissertation research exploring the lived experiences of two autistic parents diagnosed as autistic following their children’s diagnoses. In my research I used Interpretative Phenomenological Analysis (IPA, Smith et al, 2022) to elicit themes which I have used within this piece to frame the stories told by David and Sarah about their experiences.
Societal discourses around autism often occur in the context of ideas from a medical model which views autism as a disorder and situates autistic people as having deficits; such discourses contribute both to the limited literature on autistic parenting lacking attention to the joys and strengths of autistic parents as well as autistic parents being unfairly judged in the absence of support or understanding of their experiences (Murphy, 2021). This article is a retelling of the stories shared by Sarah and David and their experiences navigating familial and social contexts as newly diagnosed autistic parents.
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References
Adams, D, Stainsby, M and Paynter, J (2021) ‘Autistic mothers of autistic children: A preliminary study in an under-researched area’, Autism in Adulthood, 3 (4), pp 329 – 346. https://doi.org/10.1089/aut.2020.0078
Dallos, R, McKenzie, R and Bond, N (2020) ‘Doing things differently: Exploring attachment patterns and parental intentions in families where a child has a diagnosis of autism’. Clinical Child Psychology and Psychiatry, 25 (4), pp 766 – 777. https://d/oi.org/10.1177/1359104520907141
Dugdale, AS, Thompson, AR, Leedham, A, Beail, N and Freeth, M (2021) ‘Intense connection and love: The experiences of autistic mothers. Autism 25 (7), pp 1973 - 1984 https://doi.org/10.1177/13623613211005
De Broize, M, Evans, K, Whitehouse, AJO, Wray, J, Eapen, B and Urbanowicz, A (2022) ‘Exploring the experience of seeking an autism diagnosis as an adult’. Autism in Adulthood, 4 (2), pp 130 – 140. https://doi.org/10.1089/aut.2021.0028
Fletcher-Randle, JE (2022) ‘Where are all the autistic parents? A thematic analysis of autistic parenting discourse within the narrative of parenting and autism in online media’ Studies in Social Justice, 16 (2), pp 389 – 406 https://doi.org/10.26522/ssj.v16i2.2701
Greene, M.J. (2014) On the inside looking in: Methodological insights and challenges in conducting qualitative insider research. The Qualitative Report. 19. (20), 1 – 13. Available at: https://citeseerx.ist.psu.edu/document?repid=rep1&type=pdf&doi=8080c261057e61bd39503cd067809f92a5786066 (Accessed: 23/09/2023)
https://doi.org/10.46743/2160-3715/2014.1106
Harding, N and Carlisle, S (2021) Why didn’t I realise? We were diagnosed autistic after our kids, like Melanie Sykes and Christine McGuiness. The Sun. Available at: https://www.thesun.co.uk/fabulous/16791841/adult-autism-diagnosis-melanie-sykes-christine-mcguinness/ (Accessed: 15/06/2023)
Haydon-Laurelut, M (2016) “Critical Systemic Therapy: Autism stories and disabled people with learning difficulties” in Runswick-Cole, Mallett and Timimi (Eds) Rethinking autism diagnosis: Identity and Equality. pp 121 – 138 London. Jessica Kingsley Publishers. Available at: https://www.researchgate.net/publication/346417595_Haydon-Laurelut_M_2016_Critical_Systemic_Therapy_Autism_Stories_and_Disabled_People_with_Learning_Difficulties_In_Runswick-Cole_Mallett_Timimi_Eds_Re-Thinking_Autism_Diagnosis_Identity_and_Equality_12 (Accessed on 6/11/2022)
Helps, S (2017) ‘The ethics of researching one’s own practice’. Journal of Family Therapy, 39, pp 348 -365. https://doi.org/10.1111/1467-6427.12166
Huntley, MK, Black, MH, Jones, M, Falkmer, M, Lee EAL, Tan, T, Picen, T, Thompson, M, New, M, Heasman, B, Smith, E, Bolte, S and Girdler, S (2019) Autistica Action Briefing: Strengths-based Approaches. Available at: https://www.autistica.org.uk/downloads/files/FINAL-Strengths-Based-Approaches-ActionBriefing.pdf. (Accessed: 21/09/2023)
Jolly, B (2023) My son’s diagnosis saved my life because I too had symptoms I didn’t recognise. The Mirror Available at: htttps://www.mirror.co.uk/news/health/my-sons-diagnosis-saved-life-29875437 (Accessed: 15/06/2023)
Leedham, A, Thompson, AR, Smith, R and Freeth, M (2020) ‘I was exhausted trying to figure it out’: The experiences of females receiving an autism diagnosis in middle to late adulthood’ Autism, 24 (1), pp 135 – 146. https://doi.org/10.1177/1362361319853442
Lilley, R, Lawson, W, Hall, G, Mahony, J, Clapham, H, Heyworth, M, Arnold, S, Troller, J, Yudell, M and Pellicano, E (2023) ‘Peas in a pod’. Oral history reflections on autistic identity in family and community by late-diagnosed adults’ Journal of Autism and Developmental Disorders, 53, pp 1146 – 1161 https://doi.org/10.1007/s10803-022-05667-z
Marriott, E, Stacey, J, Hewitt, OM and Verkuijl, NE (2022) ‘Parenting an autistic child: Experiences of parents with significant autistic traits. Journal of Autism and Developmental Disorders, 52 (7), pp 3182 – 3193. https://doi.org/10.1007/s10803-021-05182-7
McKenzie, R, Dallos, R, Stedmon, J, Hancocks, H, Vickery, PJ Barton, A, Vassallo, T, Myhill, C, Chynoweth, J and Ewings, P (2020) ‘SAFE, a new therapeutic intervention for families of children with autism: A randomized controlled feasibility trial’ BMJ Open. Available at: https://bmjopen.bmj.com/content/bmjopen/10/12/e038411.full.pdf (Accessed: 21/09/2023) https://doi.org/10.1136/bmjopen-2020-038411
Moorhead, J (2021) A lot fell into place: the adults who discovered they were autistic – after their children was diagnosed with autism. The Guardian. Available at: https://www.theguardian.com/society/2021/dec/16/adults-discovered-autistic-child-diagnosed-autism. (Accessed: 15/06/2022)
Murphy, S (2021) ‘The pros and cons of being an autistic parent’. Good Autism Practice (GAP), 22 (1), pp 87 – 96
Pearce, W.B. and Cronen, V.E. (1980) Communication, action and meaning: The Creation of Social Realities. New York. Praeger
Pohl, A.L, Crockford, SK, Blakemore, M, Allison, C and Baron-Cohen, S (2020) ‘A comparative study of autistic and non-autistic women’s experience of motherhood’. Molecular Autism, 11 (3), pp 1 -12 https://doi.org/10.1186/s13229-019-0304-2
Price, D (2022) Seeking an autism diagnosis? Here’s why you might want to rethink that. Available at: https://devonprice.medium.com/seeking-an-autism-diagnosis-heres-why-you-might-want-to-rethink-that-530e79c272a0 (Accessed: 03/09/2023)
Simon, G, Evans, M, Urbistando Cano, F, Helps, SL and Vlam, I (2020) “Autism and Systemic Family Therapy” in Wampler, KS, Rastogi, M and Singh, R (eds) The Handbook of Systemic Family Therapy Volume 4 First Edition. John Wiley and Sons.
Smit, S and Hopper, J (2023) ‘Love, joy, and a lens of childhood trauma: Exploring factors that impact the mental health and well-being of autistic parents via iterative phenomenological analysis. Autism in Adulthood, 5 (1), pp 63 – 75 https://doi.org/ 10.1089/aut.2021.0101
Smith, JA, Flowers, P and Larkin, M (2022) Interpretative phenomenological analysis. Theory, method, and research. Third Edition. London. Sage
Solomon, AH and Chung, B (2012) ‘Understanding autism: How family therapists can support parents of children with autism spectrum disorders’ Family Process, 51 (2), pp 250 – 263. https://doi.org/10.1111/j.1545-5300.2012. 01399.x
Urbistando Cano, F and Simon, G (2022) ‘From autism spectrum to multi-spectra living’. Murmurations – Journal of Transformative Systemic Practice 4 (2), pp 101 – 147. https://doi.org/ 10.28963/4.2.8
Willig, C (2013) Introducing Qualitative Research Methods in Psychology: Third Edition. Maidenhead. Open University Press.
Winnard, R, Roy, M and Butler-Coyne, H (2022) ‘Motherhood: Female perspectives and experiences of being a parent with ASC’. Journal of Autism and Developmental Disorders. 52, pp 2314 – 2324. https://doi.org/ 10.1007/s10803-021-05122-5
Zaks, Z (2010) I have Aspergers Syndrome, and I am a parent. Available at: https://dsq-sds.org/index.php/dsq/article/view/1057/1243 (Accessed: 18/06/2023). https://doi.org/10.18061/dsq.v30i1