“We go through trauma”: South Asian parents’ experiences of autism diagnosis and early supports for their autistic children in Australia

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Smith, J., Aulich, A., Bent, C. A., Constantine, C., Franks, K., Goonetilleke, N., Green, C. C., Ijaz, R., Patel, K., Said, H., Wood, S., & Hudry, K. (2024). “We go through trauma”: South Asian parents’ experiences of autism diagnosis and early supports for their autistic children in Australia. Research in Autism Spectrum Disorders, 114, 102408. https://doi.org/10.1016/j.rasd.2024.102408

Publication date: 25 Apr 2024 Added to AutiHub: 14 Sep 2026 Type: Article Article language: English
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Authors

Publication authors
12
Publication authors identified as autistic
1 / 12 (8.3%)
  1. Jodie Smith
  2. Alexandra Aulich
  3. Catherine A. Bent
  4. Christos Constantine *
  1. Kathleen Franks
  2. Nilushi Goonetilleke
  3. Cherie C. Green
  4. Rabia Ijaz
  1. Kanisha Patel
  2. Helen Said
  3. Sarah Wood
  4. Kristelle Hudry

Abstract

Growth of the Australian South Asian migrant community has surged over the last decade. Yet we have minimal information about migrant South Asian parents’ experiences of raising an autistic child in Australia. This participatory research informs the issue through reporting first-hand accounts of accessing an autism diagnosis and receiving early supports for South Asian parents and their autistic children living in Australia. Parents from India, Pakistan and Sri Lanka (n = 13) were interviewed in their preferred language. During interviews, parents were asked about their experiences of the diagnostic process and navigating early supports for their autistic child. Interviews were analysed using reflexive thematic analysis. Parents described experiencing myriad challenges to accessing early autism supports, including limited knowledge, funding issues, lengthy waiting lists, and poor-quality clinicians. They also reported struggling to accept their child’s diagnoses and facing judgement from within their community. Unlike other migrant Australian communities, this group of parents did not describe obtaining community-specific supports and often navigated their journeys alone. These cumulative challenges impacted parents’ mental health. Yet, parents also described proactively seeking as much support as possible, preferring goal-based, intensive, behavioural early interventions. Clinicians should be aware that families from particular migrant/cultural minority groups may be more isolated than others, and consider how best to support a sense of community belonging in other ways. That these parents expressed preference for intensive, behavioural autism supports also highlights the diversity of service-related views and desires in the autistic and autism communities.

Bibliography cited by this reference

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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: 19 Sep 2026 01:01.

Cited references
57
With a DOI
46
Without a DOI, from raw bibliography text
10
4 / 57 (7.0%) cited references include at least one author identified as autistic.
References with data to complete
9 / 57 (15.8%)
References with detected author names
48 / 57 (84.2%)
Without detected author names
9
Without a structured title
9
Without a stable identifier
10
References with raw author names still to review
9
References with external metadata lookup issues
1
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
244
From DOI or external metadata
244
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
12
103 / 244 (42.2%) names are linked to an author already present in AutiHub. 141 / 244 (57.8%) names are not yet linked.
Names linked to a person identified as autistic
8 / 244 (3.3%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 8 / 103 (7.8%). Distinct people identified as autistic: 5 / 213 (2.3%).
  1. Elle-Jane Auert , David Trembath , Joanne Arciuli , Donna Thomas (2012). Parents’ expectations, awareness, and experiences of accessing evidence-based speech-language pathology services for their children with autism . International Journal of Speech-Language Pathology, 14(2), 109-118. Informa UK Limited.
    Type: Article DOI: 10.3109/17549507.2011.652673 OpenAlex: https://openalex.org/W2013170976
    Crossref OpenAlex OpenCitations
  2. Nicole McGill , Sharynne McLeod , Kathryn Crowe , Cen Wang , Suzanne C. Hopf (2021). Waiting lists and prioritization of children for services: Speech-language pathologists’ perspectives . Journal of Communication Disorders, 91, 106099. Elsevier BV.
    Type: Article DOI: 10.1016/j.jcomdis.2021.106099 OpenAlex: https://openalex.org/W3157318378
    Crossref OpenAlex OpenCitations
  3. Sayyed Ali Samadi , Roy McConkey , Greg Kelly (2012). The information and support needs of Iranian parents of children with autism spectrum disorders . Early Child Development and Care, 182(11), 1439-1453. Informa UK Limited.
    Type: Article DOI: 10.1080/03004430.2011.616931 OpenAlex: https://openalex.org/W2027027276
    Crossref OpenAlex OpenCitations
  4. Australian Bureau of Statistics. (2011). Classification of Cultural and Ethnic Groups (ASCCEG). ABS Canberra.
    Type: Other
    Crossref
  6. Giacomo Vivanti , Margot Prior , Katrina Williams , Cheryl Dissanayake (2014). Predictors of Outcomes in Autism Early Intervention: Why Don’t We Know More? Frontiers in Pediatrics, 2, 58. Frontiers Media SA.
    Type: Article DOI: 10.3389/fped.2014.00058 OpenAlex: https://openalex.org/W2066914637
    Crossref OpenAlex OpenCitations
  7. Australian Bureau of Statistics. (2022). Cultural Diversity of Australia.
    Type: Other
    Crossref
  8. Lauren Bishop-Fitzpatrick , Amy J. H. Kind (2017). A Scoping Review of Health Disparities in Autism Spectrum Disorder . Journal of Autism and Developmental Disorders, 47(11), 3380-3391. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-017-3251-9 OpenAlex: https://openalex.org/W2740425314
    Crossref OpenAlex OpenCitations
  9. Devin M. Casenhiser , Stuart G. Shanker , Jim Stieben (2013). Learning through interaction in children with autism: Preliminary data from asocial-communication-based intervention . Autism, 17(2), 220-241. SAGE Publications.
    Type: Article DOI: 10.1177/1362361311422052 OpenAlex: https://openalex.org/W2118023765
    Crossref OpenAlex OpenCitations
  10. Nataly Lim , Mark O’Reilly , Jeff Sigafoos , Giulio E. Lancioni , Neyda J. Sanchez (2021). A Review of Barriers Experienced by Immigrant Parents of Children with Autism when Accessing Services . Review Journal of Autism and Developmental Disorders, 8(3), 366-372. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s40489-020-00216-9 OpenAlex: https://openalex.org/W3104039511
    Crossref OpenAlex OpenCitations
  11. Amanda C. Gulsrud , Gerhard Hellemann , Stephanie Shire , CONNIE KASARI (2016). Isolating active ingredients in a parent‐mediated social communication intervention for toddlers with autism spectrum disorder . Journal of Child Psychology and Psychiatry, 57(5), 606-613. Wiley.
    Type: Article DOI: 10.1111/jcpp.12481 OpenAlex: https://openalex.org/W2121571884
    Crossref OpenAlex OpenCitations
  12. Virginia Braun , Victoria Clarke (2019). Reflecting on reflexive thematic analysis . Qualitative Research in Sport, Exercise and Health, 11(4), 589-597. Informa UK Limited.
    Type: Article DOI: 10.1080/2159676x.2019.1628806 OpenAlex: https://openalex.org/W2950504429
    Crossref OpenAlex OpenCitations
  13. N. Grant , S. Rodger , T. Hoffmann (2016). Intervention decision‐making processes and information preferences of parents of children with autism spectrum disorders . Child: Care, Health and Development, 42(1), 125-134. Wiley.
    Type: Article DOI: 10.1111/cch.12296 OpenAlex: https://openalex.org/W2124084644
    Crossref OpenAlex OpenCitations
  14. Virginia Braun , Victoria Clarke (2021). To saturate or not to saturate? Questioning data saturation as a useful concept for thematic analysis and sample-size rationales . Qualitative Research in Sport, Exercise and Health, 13(2), 201-216. Informa UK Limited.
    Type: Article DOI: 10.1080/2159676x.2019.1704846 OpenAlex: https://openalex.org/W2996597775
    Crossref OpenAlex OpenCitations
  15. Kate Paton , Harriet Hiscock (2019). Strengthening care for children with complex mental health conditions: Views of Australian clinicians . PLOS ONE, 14(4), e0214821. Public Library of Science (PLoS).
    Type: Article DOI: 10.1371/journal.pone.0214821 OpenAlex: https://openalex.org/W2932296880
    Crossref OpenAlex OpenCitations
  16. June Luong , Marian K. Yoder , Daryl Canham (2009). Southeast Asian Parents Raising a Child With Autism: A Qualitative Investigation of Coping Styles . The Journal of School Nursing, 25(3), 222-229. SAGE Publications.
    Type: Article DOI: 10.1177/1059840509334365 OpenAlex: https://openalex.org/W2124823831
    Crossref OpenAlex OpenCitations
  17. Virginia Braun , Victoria Clarke (2021). One size fits all? What counts as quality practice in (reflexive) thematic analysis? Qualitative Research in Psychology, 18(3), 328-352. Informa UK Limited.
    Type: Article DOI: 10.1080/14780887.2020.1769238 OpenAlex: https://openalex.org/W3048560297
    Crossref OpenAlex OpenCitations
  18. Nilushini Kasilingam , Hannah Waddington , Larah van der Meer (2021). Early Intervention for Children with Autism Spectrum Disorder in New Zealand: What Children Get and What Parents Want . International Journal of Disability, Development and Education, 68(4), 521-537. Informa UK Limited.
    Type: Article DOI: 10.1080/1034912x.2019.1696949 OpenAlex: https://openalex.org/W2990124917
    Crossref OpenAlex OpenCitations
  19. Priscilla Gibson , Laura Abrams (2003). Racial Difference in Engaging, Recruiting, and Interviewing African American Women in Qualitative Research . Qualitative Social Work, 2(4), 457-476. SAGE Publications.
    Type: Article DOI: 10.1177/1473325003024005 OpenAlex: https://openalex.org/W2134973530
    Crossref OpenAlex OpenCitations
  20. Sarabeth Broder‐Fingert , Camilla Mateo , Katherine E. Zuckerman (2020). Structural Racism and Autism . Pediatrics, 146(3). American Academy of Pediatrics (AAP).
    Type: Article DOI: 10.1542/peds.2020-015420 OpenAlex: https://openalex.org/W3081058156
    Crossref OpenAlex OpenCitations
  21. Brinda Jegatheesan , Peggy J. Miller , Susan A. Fowler (2010). Autism From a Religious Perspective: A Study of Parental Beliefs in South Asian Muslim Immigrant Families . Focus on Autism and Other Developmental Disabilities, 25(2), 98-109. SAGE Publications.
    Type: Article DOI: 10.1177/1088357610361344 OpenAlex: https://openalex.org/W2153420823
    Crossref OpenAlex OpenCitations
  22. Gemma Carey , Eleanor Malbon , James Blackwell (2021). Administering inequality? The National Disability Insurance Scheme and administrative burdens on individuals . Australian Journal of Public Administration, 80(4), 854-872. Wiley.
    Type: Article DOI: 10.1111/1467-8500.12508 OpenAlex: https://openalex.org/W3190075664
    Crossref OpenAlex OpenCitations
  23. Rebecca J. Landa (2018). Efficacy of early interventions for infants and young children with, and at risk for, autism spectrum disorders . International Review of Psychiatry, 30(1), 25-39. Informa UK Limited.
    Type: Article DOI: 10.1080/09540261.2018.1432574 OpenAlex: https://openalex.org/W2792921834
    Crossref OpenAlex OpenCitations
  24. Zuleyha Cidav , Steven C. Marcus , DAVID S. MANDELL (2012). Implications of Childhood Autism for Parental Employment and Earnings . Pediatrics, 129(4), 617-623. American Academy of Pediatrics (AAP).
    Type: Article DOI: 10.1542/peds.2011-2700 OpenAlex: https://openalex.org/W2171917821
    Crossref OpenAlex OpenCitations
  25. Bennett M. Liu , Kelley Paskov , Jack Kent , Maya McNealis , Soren Sutaria , Olivia Dods et al. (2023). Racial and Ethnic Disparities in Geographic Access to Autism Resources Across the US . JAMA Network Open, 6(1), e2251182. American Medical Association (AMA).
    Type: Article DOI: 10.1001/jamanetworkopen.2022.51182 OpenAlex: https://openalex.org/W4317776986
    Crossref OpenAlex OpenCitations
  26. Fiona Fox , Nura Aabe , Katrina Turner , Sabi Redwood , Dheeraj Rai (2017). “It was like walking without knowing where I was going”: A Qualitative Study of Autism in a UK Somali Migrant Community . Journal of Autism and Developmental Disorders, 47(2), 305-315. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-016-2952-9 OpenAlex: https://openalex.org/W2556705413
    Crossref OpenAlex OpenCitations
  27. Wai Man Cheng , Timothy B. Smith , Marshall Butler , Tina M. Taylor , Devan Clayton (2023). Effects of parent-implemented interventions on outcomes of children with autism: A meta-analysis . Journal of Autism and Developmental Disorders, 53(11), 4147-4163. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-022-05688-8 OpenAlex: https://openalex.org/W4292854187
    Crossref OpenAlex
  28. Lucy Ellen Selman , Fiona Fox , Nura Aabe , Katrina Turner , Dheeraj Rai , Sabi Redwood (2018). ‘You are labelled by your children’s disability’ – A community-based, participatory study of stigma among Somali parents of children with autism living in the United Kingdom . Ethnicity & Health, 23(7), 781-796. Informa UK Limited.
    Type: Article DOI: 10.1080/13557858.2017.1294663 OpenAlex: https://openalex.org/W2593358094
    Crossref OpenAlex OpenCitations
  29. Nik Lomax , Pia Wohland , Philip Rees , Paul Norman (2020). The impacts of international migration on the UK’s ethnic populations . Journal of Ethnic and Migration Studies, 46(1), 177-199. Informa UK Limited.
    Type: Article DOI: 10.1080/1369183x.2019.1577726 OpenAlex: https://openalex.org/W2921113551
    Crossref OpenAlex OpenCitations
  30. Mohammad Didar Hossain , Helal Uddin Ahmed , M M Jalal Uddin , Waziul Alam Chowdhury , Mohd S Iqbal , Razin Iqbal Kabir et al. (2017). Autism Spectrum disorders (ASD) in South Asia: a systematic review . BMC Psychiatry, 17(1), 281. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s12888-017-1440-x OpenAlex: https://openalex.org/W2740943269
    Crossref OpenAlex OpenCitations
  31. Amelia G. Edwards , Chris M. Brebner , Paul F. McCormack , Colin J. MacDougall (2018). From ‘Parent’ to ‘Expert’: How Parents of Children with Autism Spectrum Disorder Make Decisions About Which Intervention Approaches to Access . Journal of Autism and Developmental Disorders, 48(6), 2122-2138. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-018-3473-5 OpenAlex: https://openalex.org/W2786745651
    Crossref OpenAlex OpenCitations
  32. Nigesh Kalorath , Sukanya B. Menon , C. Jayan (2022). A systematic review on parent mediated intervention programmes for children with autism spectrum disorders in Indi . International Journal Of Community Medicine And Public Health, 9(6), 2718. Medip Academy.
    Type: Article DOI: 10.18203/2394-6040.ijcmph20221332 OpenAlex: https://openalex.org/W4280595671
    Crossref OpenAlex OpenCitations
  33. The PACT Consortium , Kathy Leadbitter , Kathy Leadbitter , Catherine Aldred , Barbara Barrett , Tony Charman et al. (2018). The Association Between Child and Family Characteristics and the Mental Health and Wellbeing of Caregivers of Children with Autism in Mid-Childhood . Journal of Autism and Developmental Disorders, 48(4), 1189-1198. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-017-3392-x OpenAlex: https://openalex.org/W2768693229
    Crossref OpenAlex OpenCitations
  34. Lata Satyen (2021). Gender norms in the Indian migrant community in Australia: family, community, and work roles . Journal of Gender Studies, 30(4), 452-464. Informa UK Limited.
    Type: Article DOI: 10.1080/09589236.2021.1884535 OpenAlex: https://openalex.org/W3131510687
    Crossref OpenAlex OpenCitations
  36. Muhammad Zaid Malik (2009). Religion, Gender and Identity Construction amongst Pakistanis in Australia . In Minerva Access (University of Melbourne).
    Type: Book chapter OpenAlex: https://openalex.org/W2790357697
    OpenAlex
  37. Cherie C. Green , Jodie Smith , Catherine A. Bent , Lacey Chetcuti , Rhylee Sulek , Mirko Uljarevic et al. (2021). Differential predictors of well-being versus mental health among parents of pre-schoolers with autism . Autism, 25(4), 1125-1136. SAGE Publications.
    Type: Article DOI: 10.1177/1362361320984315 OpenAlex: https://openalex.org/W3122857933
    Crossref OpenAlex OpenCitations
  38. Kartini Ilias , Kim Cornish , Auretta S. Kummar , Miriam Sang-Ah Park , Karen J. Golden (2018). Parenting Stress and Resilience in Parents of Children With Autism Spectrum Disorder (ASD) in Southeast Asia: A Systematic Review . Frontiers in Psychology, 9, 280-280. Frontiers Media SA.
    Type: Article DOI: 10.3389/fpsyg.2018.00280 OpenAlex: https://openalex.org/W2797955807
    Crossref OpenAlex OpenCitations
  39. Justin B. Leaf , Joseph H. Cihon , Ronald Leaf , John McEachin , Nicholas Liu , Noah Russell et al. (2022). Concerns About ABA-Based Intervention: An Evaluation and Recommendations . Journal of Autism and Developmental Disorders, 52(6), 2838-2853. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-021-05137-y OpenAlex: https://openalex.org/W3167081998
    Crossref OpenAlex OpenCitations
  40. Francesca Happé , Uta Frith (2020). Annual Research Review: Looking back to look forward – changes in the concept of autism and implications for future research . Journal of Child Psychology and Psychiatry, 61(3), 218-232. Wiley.
    Type: Article DOI: 10.1111/jcpp.13176 OpenAlex: https://openalex.org/W3003423347
    Crossref OpenAlex OpenCitations
  41. Heneker, K., Zizzo, G., Awata, M., & Goodwin-Smith, I. (2017). Engaging CALD communities in the NDIS.
    Type: Other
    Crossref
  42. Jennifer Lee , Karthick Ramakrishnan (2020). Who counts as Asian . Ethnic and Racial Studies, 43(10), 1733-1756. Informa UK Limited.
    Type: Article DOI: 10.1080/01419870.2019.1671600
    Crossref OpenCitations
  43. Christina Sakai , Christina Mulé , Amy LeClair , Frances Chang , Samantha Sliwinski , Yoyo Yau et al. (2019). Parent and Provider Perspectives on the Diagnosis and Management of Autism in a Chinese Immigrant Population . Journal of Developmental & Behavioral Pediatrics, 40(4), 257-265. Ovid Technologies (Wolters Kluwer Health).
    Type: Article DOI: 10.1097/dbp.0000000000000660 OpenAlex: https://openalex.org/W2933219395
    Crossref OpenAlex OpenCitations
  44. David Trembath , Mandeep Gurm , Nichole E. Scheerer , Dominic A. Trevisan , Jessica Paynter , Gal Bohadana et al. (2019). Systematic review of factors that may influence the outcomes and generalizability of parent‐mediated interventions for young children with autism spectrum disorder . Autism Research, 12(9), 1304-1321. Wiley.
    Type: Article DOI: 10.1002/aur.2168 OpenAlex: https://openalex.org/W2957409637
    Crossref OpenAlex OpenCitations
  45. Jennifer Lee , Karthick Ramakrishnan (2020). Who counts as Asian . Ethnic and Racial Studies, 43(10), 1733-1756. Informa UK Limited.
    Type: Article DOI: 10.1080/01419870.2020.1734229 OpenAlex: https://openalex.org/W2980522899
    OpenAlex
  46. Shefaly Shorey , Esperanza D Ng , Gørill Haugan , Evelyn Law (2020). The parenting experiences and needs of Asian primary caregivers of children with autism: A meta-synthesis . Autism, 24(3), 591-604. SAGE Publications.
    Type: Article DOI: 10.1177/1362361319886513 OpenAlex: https://openalex.org/W2984815026
    Crossref OpenAlex OpenCitations
  47. Nicole McGill , Kathryn Crowe , Sharynne Mcleod (2020). “Many wasted months”: Stakeholders’ perspectives about waiting for speech-language pathology services . International Journal of Speech-Language Pathology, 22(3), 313-326. Informa UK Limited.
    Type: Article DOI: 10.1080/17549507.2020.1747541 OpenAlex: https://openalex.org/W3017300966
    Crossref OpenAlex OpenCitations
  49. Kaylin M Russell , Brooke Ingersoll (2021). Factors related to parental therapeutic self-efficacy in a parent-mediated intervention for children with autism spectrum disorder: A mixed methods study . Autism, 25(4), 971-981. SAGE Publications.
    Type: Article DOI: 10.1177/1362361320974233 OpenAlex: https://openalex.org/W3108150797
    Crossref OpenAlex OpenCitations
  50. Mackintosh (2005). Sources of information and support used by parents of children with autism spectrum disorders . Journal on Developmental Disabilities, 12(1), 41.
    Type: Other
    Crossref
  51. Malik, M. (2009). Religion, Gender and Identity Construction amongst Pakistanis in Australia. In Pakistani Diasporas: Culture, Conflict, and Change (1 ed., pp. 167–184). Oxford University Press.
    Type: Other
    Crossref
  53. National Disability Insurance Agency. (2019). NDIS Culturally and Linguistically Diverse Participants.
    Type: Other
    Crossref
  54. National Disability Insurance Agency. (2022). NDIS Quarterly Report to disability ministers (Q4). Canberra.
    Type: Other
    Crossref
  55. Royal College of Speech and Language Therapists. (2023). https://www.rcslt.org/student/faqs-for-nqps/ . Retrieved 15. 09. 2023 from.
    Type: Other
    Crossref
  56. Royal Commission into Violence Abuse Neglect and Exploitation of People with a Disability. (2021). Overview of Responses to Experiences of Cultural and Linguistically Diverse People With Disability Issues Paper.
    Type: Other
    Crossref
  57. Varghese, P. N. (2018). The Role of the Diaspora. In P. N. Varghese (Ed.), An India Economic Strategy to 2035. Navigating from Potential to Delivery.
    Type: Other
    Crossref