Examining the support experiences of autistic young people with multiple marginalized identities in the United Kingdom

Added on 07/11/2024

Type de contenu

Journal article of the type Scientific research ( ; english)

Examining the support experiences of autistic young people with multiple marginalized identities in the United Kingdom published in the journal "Autism in adulthood" Preprint, 12 pages , doi: 10.1089/aut.2024.0059

*Two co-authors had publicly identified as autistic. [Learn more about this mention]

=> Restricted and paid access

Summary/Presentation

Background: The challenges that autistic young people face when accessing support have been well documented. However, such issues may be exacerbated for autistic young people who have additional marginalized identities (e.g., being from a minority ethnic group or minority gender) compared with autistic young people who do not have additional marginalized identities.
Methods: We took a participatory approach that included autistic young people with multiple marginalized identities at every stage of the research process. Our team interviewed 13 autistic young people (aged 16–25 years) who also identified with other marginalized identities. We analyzed the data using reflexive thematic analysis.
Results: We generated one superordinate theme, which reflected how accessing support was perceived to be challenging for all autistic young people but especially so for this group with multiple marginalized identities. Within the superordinate theme, we generated three subthemes that provide examples of how common challenges were felt to be exacerbated for our participants. First, our participants reported difficulties in obtaining timely diagnoses, which hindered access to appropriate support services. Second, they expressed a sense of exclusion from existing support structures, with services often failing to address their unique needs. Finally, cultural and linguistic barriers meant that our participants’ parents and caregivers did not always know how to help them get support. As a result, some of our participants had to advocate for themselves.
Conclusion: Our findings highlight the need for more inclusive and accessible support services that meet the diverse needs of all autistic young people, including those with multiple marginalized identities. Recommendations include offering a variety of support options to accommodate individual preferences and providing ways to empower all autistic people to advocate for their support needs.


For your information:

(1) References in blue are resources listed on our site.

(2) Authors listed in this bibliography whose names are in color have published other resources referenced on the site. Clicking on the name allows you to see the list of resources they have published and shared on the site.

(3) Authors whose names are followed by an asterisk have publicly disclosed being autistic.


  • B. Adak, S. Halder (2017). "Systematic Review on Prevalence for Autism Spectrum Disorder with Respect to Gender and Socio-Economic Status". J Ment Disord Treat, 03(01). doi:10.4172/2471-271x.1000133

  • A. Psychiatric Association (2013). "Diagnostic and Statistical Manual of Mental Disorders".

  • B. Beresford, S. Mukherjee, E. Mayhew, E. Heavey, A. Park, L. Stuttard, V. Allgar, M. Knapp (2020). "Evaluating specialist autism teams' provision of care and support for autistic adults without learning disabilities: the SHAPE mixed-methods study". Health Serv Deliv Res, 8(48). doi:10.3310/hsdr08480

  • V. Braun, V. Clarke (2013). "Successful Qualitative Research: A Practical Guide for Beginners." Sage.

  • V. Braun, V. Clarke (2019). "Reflecting on reflexive thematic analysis". Qualitative Research in Sport, Exercise and Health, 11(4). doi:10.1080/2159676x.2019.1628806

  • V. Braun, V. Clarke (2006). "Using thematic analysis in psychology". Qualitative Research in Psychology, 3(2). doi:10.1191/1478088706qp063oa

  • M. Cascio, J. Weiss, E. Racine (2021). "Making Autism Research Inclusive by Attending to Intersectionality: a Review of the Research Ethics Literature". Rev J Autism Dev Disord, 8(1). doi:10.1007/s40489-020-00204-z

  • N. Cheak‐Zamora, M. Teti, J. First (2015). "'Transitions are Scary for our Kids, and They're Scary for us': Family Member and Youth Perspectives on the Challenges of Transitioning to Adulthood with Autism". Research Intellect Disabil, 28(6). doi:10.1111/jar.12150

  • Y. Cheng, B. Tekola, A. Balasubramanian, L. Crane, K. Leadbitter (2023). "Neurodiversity and community-led rights-based movements: Barriers and opportunities for global research partnerships". Autism, 27(3). doi:10.1177/13623613231159165

  • K. Cooper, A. Burnley, W. Mandy (2023). "Autism Transition to Adulthood Groups (ATAG)." ISRCTN Registry.

  • L. Crane, J. Davies, A. Fritz, S. O’Brien, A. Worsley, A. Remington (2022). "Autistic young people's experiences of transitioning to adulthood following the Children and Families Act 2014". British Educational Res J, 48(1). doi:10.1002/berj.3753

  • L. Crane, R. Batty, H. Adeyinka, L. Goddard, L. Henry, E. Hill (2018). "Autism Diagnosis in the United Kingdom: Perspectives of Autistic Adults, Parents and Professionals". J Autism Dev Disord, 48(11). doi:10.1007/s10803-018-3639-1

  • M. Claire Diemer, E. Gerstein, A. Regester (2022). "Autism presentation in female and Black populations: Examining the roles of identity, theory, and systemic inequalities". Autism, 26(8). doi:10.1177/13623613221113501

  • G. Lockwood Estrin, V. Milner, D. Spain, F. Happé, E. Colvert (2021). "Barriers to Autism Spectrum Disorder Diagnosis for Young Women and Girls: a Systematic Review". Rev J Autism Dev Disord, 8(4). doi:10.1007/s40489-020-00225-8

  • J. Hall (1999). "Marginalization Revisited: Critical, Postmodern, and Liberation Perspectives". Advances in Nursing Science, 22(2). doi:10.1097/00012272-199912000-00009

  • E. Han, K. Scior, E. Heath, K. Umagami, L. Crane (2023). "Development of stigma-related support for autistic adults: Insights from the autism community". Autism, 27(6). doi:10.1177/13623613221143590

  • A. Hancock (2007). "When Multiplication Doesn't Equal Quick Addition: Examining Intersectionality as a Research Paradigm". Persp on Pol, 5(1). doi:10.1017/s1537592707070065

  • A. Hillier, N. Gallop, E. Mendes, D. Tellez, A. Buckingham, A. Nizami, D. OToole (2020). "LGBTQ + and autism spectrum disorder: Experiences and challenges". International Journal of Transgender Health, 21(1). doi:10.1080/15532739.2019.1594484

  • M. Hosozawa, A. Sacker, W. Mandy, E. Midouhas, E. Flouri, N. Cable (2020). "Determinants of an autism spectrum disorder diagnosis in childhood and adolescence: Evidence from the UK Millennium Cohort Study". Autism, 24(6). doi:10.1177/1362361320913671

  • S. Jones*, C. Gordon, S. Mizzi (2023). "Representation of autism in fictional media: A systematic review of media content and its impact on viewer knowledge and understanding of autism". Autism, 27(8). doi:10.1177/13623613231155770

  • M. Kalyanpur, B. Harry (2012). "Cultural Reciprocity in Special Education." Brookes.

  • V. Kentrou, D. MJ de Veld, K. JK Mataw, S. Begeer (2019). "Delayed autism spectrum disorder recognition in children and adolescents previously diagnosed with attention-deficit/hyperactivity disorder". Autism, 23(4). doi:10.1177/1362361318785171

  • E. Lewis, S. Dababnah, K. Hollie, I. Kim, Y. Wang, W. Shaia (2022). "The creator did not give me more than I can handle: Exploring coping in parents of Black autistic children". Autism, 26(8). doi:10.1177/13623613211070865

  • A. Makino, L. Hartman, G. King, P. Ying Wong, M. Penner (2021). "Parent Experiences of Autism Spectrum Disorder Diagnosis: a Scoping Review". Rev J Autism Dev Disord, 8(3). doi:10.1007/s40489-021-00237-y

  • N. Mallipeddi, R. VanDaalen (2022). "Intersectionality Within Critical Autism Studies: A Narrative Review". Autism in Adulthood, 4(4). doi:10.1089/aut.2021.0014

  • K. Malone, J. Pearson, K. Palazzo, L. Manns, A. Rivera, D. Mason Martin (2022). "The Scholarly Neglect of Black Autistic Adults in Autism Research". Autism in Adulthood, 4(4). doi:10.1089/aut.2021.0086

  • R. Miller, B. Ranon Nachman*, R. Wynn (2020). "'I Feel Like They are all Interconnected': Understanding the Identity Management Narratives of Autistic LGBTQ College Students". College Student Affairs Journal, 38(1). doi:10.1353/csj.2020.0000

  • L. Mottron (2021). "A radical change in our autism research strategy is needed: Back to prototypes". Autism Research, 14(10). doi:10.1002/aur.2494

  • NHS (1995). "Together We Stand: Thematic Review of the Commissioning, Role and Management of Child and Adolescent Mental Health Services." Published online 1995.

  • J. Parr, S. Wigham, W. Farr, I. Male, L. Isard, R. Lees, V. Reddy, G. Saunders, V. Grahame (2024). "A national research survey of childhood autism assessment services in the UK: empirical evidence of diagnostic practice, challenges and improvement opportunities". bmjpo, 8(1). doi:10.1136/bmjpo-2024-002496

  • M. Peachey, L. Crane (2024). "'I Don't Understand Their Sense of Belonging': Exploring How Nonbinary Autistic Adults Experience Gender". Autism in Adulthood. doi:10.1089/aut.2023.0071

  • J. Pearson, H. Meadan (2021). "FACES: An Advocacy Intervention for African American Parents of Children With Autism". Intellectual and Developmental Disabilities, 59(2). doi:10.1352/1934-9556-59.2.155

  • J. Pearson, A. Traficante, L. Denny, K. Malone, E. Codd (2020). "Meeting FACES: Preliminary Findings from a Community Workshop for Minority Parents of Children with Autism in Central North Carolina". J Autism Dev Disord, 50(1). doi:10.1007/s10803-019-04295-4

  • C. Salazar, L. Abrams (2005). "Conceptualizing Identity Development in Members of Marginalized Groups". Journal of Professional Counseling: Practice, Theory & Research, 33(1). doi:10.1080/15566382.2005.12033812

  • H. Schmengler, D. Cohen, S. Tordjman, M. Melchior (2021). "Autism Spectrum and Other Neurodevelopmental Disorders in Children of Immigrants: A Brief Review of Current Evidence and Implications for Clinical Practice". Front. Psychiatry, 12. doi:10.3389/fpsyt.2021.566368

  • E. Simien (2007). "Doing Intersectionality Research: From Conceptual Issues to Practical Examples". Pol & Gen, 3(2). doi:10.1017/s1743923x07000086

  • J. Smith, A. Stacey Rabba, L. Cong, P. Datta, E. Dresens, G. Hall*, M. Heyworth*, W. Lawson*, P. Lee, R. Lilley, N. Syeda, E. Ma, J. Wang, R. Wang, C. Tze Yeow, E. Pellicano (2023). "'They Were Saying That I Was a Typical Chinese Mum' : Chinese Parents' Experiences of Parent-Teacher Partnerships for Their Autistic Children". J Autism Dev Disord, 53(12). doi:10.1007/s10803-022-05748-z

  • H. Tajfel, J. Turner (1979). "An integrative theory of intergroup conflict." In: M.J. Hatch, M. Schultz (eds). Organizational Identity: A Reader. Oxford University Press, 56-65.

  • M. Tervalon, J. Murray-García (1998). "Cultural Humility Versus Cultural Competence: A Critical Distinction in Defining Physician Training Outcomes in Multicultural Education". hpu, 9(2). doi:10.1353/hpu.2010.0233

  • S. Tromans, V. Chester, E. Gemegah, K. Roberts, Z. Morgan, G. Lily Yao, T. Brugha (2021). "Autism identification across ethnic groups: a narrative review". AIA, 7(3). doi:10.1108/aia-03-2020-0017

  • J. Tupou, C. Ataera, C. Wallace-Watkin, H. Waddington (2024). "Supporting tamariki takiwātanga Māori (autistic Māori children): Exploring the experience of early childhood educators". Autism, 28(3). doi:10.1177/13623613231181622


 
Summarize/Comment on/Translate this reference?