“Living Independently Means Everything to Me”: The Voice of Australian Autistic Adults

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Ansari, M. A., Edwards, C., & Gibbs, V. (2023). “Living Independently Means Everything to Me”: The Voice of Australian Autistic Adults. Autism in Adulthood, 6(3), 312-320. https://doi.org/10.1089/aut.2022.0102

Publication date: 6 Sep 2023 Added to AutiHub: 5 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. Mustafa Al Ansari
  2. Chris Edwards *
  3. Vicki Gibbs

Abstract

Background: Despite the desire of many autistic adults to live independently, recent studies suggest that only about one in six autistic adults do. This includes living alone, with a partner, or with friends. This is a rate that is lower than adults with other disabilities. Existing studies from other countries have explored the potential barriers to independent living, with very few exploring the actual experiences of autistic adults. To the best of our knowledge, there have been no published studies exploring the firsthand moving out experiences of autistic adults globally and none that have explored their independent living experiences in Australia. Methods: Autistic adults with independent living experience in Australia were invited to partake in an interview to understand their moving out and independent living experiences. Interviews were held virtually, audio recorded, and transcribed. Transcriptions were coded in NVivo and thematically analyzed. Results: A total of 11 autistic adults were interviewed (aged 21-50 years). Three key themes were derived from the interviews. Autistic adults perceived independent living as important to have their own space with added autonomy and control (Theme 1). However, autistic adults shared that the moving out process and independent living comes with many challenges, and currently supports are limited (Theme 2). Nine of the 11 participants were diagnosed as adults, and they shared the importance of diagnosis and how an earlier diagnosis may have influenced their choice of accommodation and living arrangements (Theme 3). Conclusions: Findings from this study reiterate the importance of independent living to autistic adults and shed light on the challenges of transitioning to independent living. It further adds to the growing literature about the importance of early diagnosis on later life choices. Better pathways toward adult diagnosis and the provision of supports for the moving out process would be useful to ease transition to independent living for autistic adults.

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Bibliography inclusion overview

These indicators describe the cited bibliography imported for this publication. Cited-reference metrics use the cited-reference total as denominator. Cited-author metrics state whether they use all cited-author occurrences or only occurrences linked to authors already integrated in the AutiHub database. They use cached links between cited authors and authors integrated in the AutiHub database. Last computed: 16 Aug 2026 11:30.

Cited references
42
Total cited references integrated for this publication.
Cited references with an identified autistic author
3 / 42 (7.1%)
Cited author occurrences identified as autistic
6 / 155 (3.9%)
Among occurrences linked to AutiHub author records: 6 / 65 (9.2%). Distinct cited authors identified as autistic: 5 / 145 (3.4%).
Cited author occurrences linked to AutiHub author records
65 / 155 (41.9%)
Distinct linked cited authors: 56 / 145 (38.6%)
Linked cited-author occurrences not identified as autistic
59 / 65 (90.8%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 59 / 155 (38.1%). Distinct linked cited authors not identified as autistic: 51 / 56 (91.1%).
  1. Philippa Neary , Linda Gilmore , Jill Ashburner (2015). Post-school needs of young people with high-functioning Autism Spectrum Disorder . Research in Autism Spectrum Disorders, 18, 1-11. Elsevier BV.
    Type: Article DOI: 10.1016/j.rasd.2015.06.010 OpenAlex: https://openalex.org/W1128566613
    Crossref OpenAlex OpenCitations
  2. (n.d.). Australian Autism Research Council. Australian Autism Research Council: 2019 Research Priorities. Brisbane: Autism CRC; 2019.
    Type: Other
    Crossref
  3. Yunhe Huang , Samuel R. C. Arnold , Kitty‐Rose Foley , Julian N Trollor (2020). Diagnosis of autism in adulthood: A scoping review . Autism, 24(6), 1311-1327. SAGE Publications.
    Type: Article DOI: 10.1177/1362361320903128 OpenAlex: https://openalex.org/W3008810253
    Crossref OpenAlex OpenCitations
  4. Roberta S. Rehm , Elena Fuentes-Afflick , Lucille T. Fisher , Catherine A. Chesla (2012). Parent and Youth Priorities During the Transition to Adulthood for Youth With Special Health Care Needs and Developmental Disability . Advances in Nursing Science, 35(3), E57-E72. Ovid Technologies (Wolters Kluwer Health).
    Type: Article DOI: 10.1097/ans.0b013e3182626180 OpenAlex: https://openalex.org/W2000768721
    Crossref OpenAlex OpenCitations
  5. Kristy A. Anderson , T. A. McDonald , Deirdre Edsall , Leann E. Smith , Julie Lounds Taylor (2016). Postsecondary Expectations of High-School Students With Autism Spectrum Disorders . Focus on Autism and Other Developmental Disabilities, 31(1), 16-26. SAGE Publications.
    Type: Article DOI: 10.1177/1088357615610107 OpenAlex: https://openalex.org/W2293290913
    Crossref OpenAlex OpenCitations
  6. Amanda Taboas , Karla Doepke , Corinne Zimmerman (2023). Preferences for identity-first versus person-first language in a US sample of autism stakeholders . Autism, 27(2), 565-570. SAGE Publications.
    Type: Article DOI: 10.1177/13623613221130845 OpenAlex: https://openalex.org/W4306157884
    Crossref OpenAlex OpenCitations
  7. Christina Mohr Jensen , Hans-Christoph Steinhausen , Marlene Briciet Lauritsen (2014). Time Trends Over 16 Years in Incidence-Rates of Autism Spectrum Disorders Across the Lifespan Based on Nationwide Danish Register Data . Journal of Autism and Developmental Disorders, 44(8), 1808-1818. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-014-2053-6 OpenAlex: https://openalex.org/W2081843311
    Crossref OpenAlex OpenCitations
  8. Nancy Cheak‐Zamora , Michelle Teti , Anna Maurer-Batjer , Donna Halloran (2016). Snapshots of Growing Up: Youth with Autism Explore Adulthood Through Photovoice . Journal of Developmental & Behavioral Pediatrics, 37(6), 433-441. Ovid Technologies (Wolters Kluwer Health).
    Type: Article DOI: 10.1097/dbp.0000000000000313 OpenAlex: https://openalex.org/W2340309681
    Crossref OpenCitations
  9. Jillian M. Grey , Gemma M. Griffith , Vasiliki Totsika , Richard P. Hastings (2015). Families' Experiences of Seeking Out‐of‐Home Accommodation for Their Adult Child With an Intellectual Disability . Journal of Policy and Practice in Intellectual Disabilities, 12(1), 47-57. Wiley.
    Type: Article DOI: 10.1111/jppi.12106 OpenAlex: https://openalex.org/W2153405950
    Crossref OpenAlex OpenCitations
  10. Xin Wei , Mary Wagner , Laura Hudson , Jennifer W. Yu , Harold Javitz (2016). The Effect of Transition Planning Participation and Goal-Setting on College Enrollment Among Youth With Autism Spectrum Disorders . Remedial and Special Education, 37(1), 3-14. SAGE Publications.
    Type: Article DOI: 10.1177/0741932515581495 OpenAlex: https://openalex.org/W2106528142
    Crossref OpenAlex OpenCitations
  11. Serena Cribb , Lorcan Kenny , Elizabeth Pellicano (2019). ‘I definitely feel more in control of my life’: The perspectives of young autistic people and their parents on emerging adulthood . Autism, 23(7), 1765-1781. SAGE Publications.
    Type: Article DOI: 10.1177/1362361319830029 OpenAlex: https://openalex.org/W2918237446
    Crossref OpenAlex OpenCitations
  13. Laura Foran Lewis (2017). A Mixed Methods Study of Barriers to Formal Diagnosis of Autism Spectrum Disorder in Adults . Journal of Autism and Developmental Disorders, 47(8), 2410-2424. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-017-3168-3 OpenAlex: https://openalex.org/W2615871753
    Crossref OpenAlex OpenCitations
  14. Natalie A. Henninger , Julie Lounds Taylor (2014). Family Perspectives on a Successful Transition to Adulthood for Individuals With Disabilities . Intellectual and Developmental Disabilities, 52(2), 98-111. Informa UK Limited.
    Type: Article DOI: 10.1352/1934-9556-52.2.98 OpenAlex: https://openalex.org/W2155664562
    Crossref OpenAlex
  15. Anke Scheeren , Patricia Howlin , Meike Bartels , Lydia Krabbendam , Sander Begeer (2022). The importance of home: Satisfaction with accommodation, neighborhood, and life in adults with autism . Autism Research, 15(3), 519-530. Wiley.
    Type: Article DOI: 10.1002/aur.2653 OpenAlex: https://openalex.org/W4200435163
    Crossref OpenAlex OpenCitations
  16. Kristy A. Anderson , Paul Shattuck , Benjamin P Cooper , Anne M. Roux , Mary Wagner (2014). Prevalence and correlates of postsecondary residential status among young adults with an autism spectrum disorder . Autism, 18(5), 562-570. SAGE Publications.
    Type: Article DOI: 10.1177/1362361313481860 OpenAlex: https://openalex.org/W2169808177
    Crossref OpenAlex OpenCitations
  17. Collette Sosnowy , Chloe Silverman , Paul Shattuck (2018). Parents’ and young adults’ perspectives on transition outcomes for young adults with autism . Autism, 22(1), 29-39. SAGE Publications.
    Type: Article DOI: 10.1177/1362361317699585 OpenAlex: https://openalex.org/W2760977149
    Crossref OpenAlex OpenCitations
  18. Gray Atherton , Emma Edisbury , Andrea Piovesan , Liam Cross (2022). Autism Through the Ages: A Mixed Methods Approach to Understanding How Age and Age of Diagnosis Affect Quality of Life . Journal of Autism and Developmental Disorders, 52(8), 3639-3654. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-021-05235-x OpenAlex: https://openalex.org/W3191831555
    Crossref OpenAlex OpenCitations
  19. (n.d.). Richdale A Haschek A Chetcuti L Lawson L. Longitudinal Study of Australian School Leavers with Autism. Brisbane: Autism CRC; 2022.
    Type: Other
    Crossref
  20. Wei Song , Mark S. Salzer , Stacy L. Nonnemacher , Kaitlin Koffer Miller , Lindsay Shea (2022). Living arrangements and community participation among autistic adults: Exploring the possible influences of living alone or with others . Research in Developmental Disabilities, 124, 104213. Elsevier BV.
    Type: Article DOI: 10.1016/j.ridd.2022.104213 OpenAlex: https://openalex.org/W4220819533
    Crossref OpenAlex OpenCitations
  21. Darren Hedley , Mirko Uljarević , Lauren Cameron , Santoshi Halder , Amanda L. Richdale , Cheryl Dissanayake (2017). Employment programmes and interventions targeting adults with autism spectrum disorder: A systematic review of the literature . Autism, 21(8), 929-941. SAGE Publications.
    Type: Article DOI: 10.1177/1362361316661855 OpenAlex: https://openalex.org/W2515376401
    Crossref OpenAlex OpenCitations
  22. L. A. Cameron , Bruce J. Tonge , Patricia Howlin , S. L. Einfeld , R. J. Stancliffe , Kylie M. Gray (2022). Social and community inclusion outcomes for adults with autism with and without intellectual disability in Australia . Journal of Intellectual Disability Research, 66(7), 655-666. Wiley.
    Type: Article DOI: 10.1111/jir.12953 OpenAlex: https://openalex.org/W4282916984
    Crossref OpenAlex OpenCitations
  23. Anne V. Kirby , Kristina J. Cottle Feldman , Jenna M. Hoffman , Marissa L. Diener , Michael B. Himle (2020). Transition preparation activities and expectations for the transition to adulthood among parents of autistic youth . Research in Autism Spectrum Disorders, 78, 101640. Elsevier BV.
    Type: Article DOI: 10.1016/j.rasd.2020.101640 OpenAlex: https://openalex.org/W3071634441
    Crossref OpenAlex OpenCitations
  24. Chelsea Auld , Kitty‐Rose Foley , Andrew Cashin (2022). Daily living skills of autistic adolescents and young adults: A scoping review . Australian Occupational Therapy Journal, 69(4), 456-474. Wiley.
    Type: Article DOI: 10.1111/1440-1630.12806 OpenAlex: https://openalex.org/W4225261520
    Crossref OpenAlex OpenCitations
  26. Dimitriadou Ioanna (2020). Independent living of individuals with intellectual disability: a combined study of the opinions of parents, educational staff, and individuals with intellectual disability in Greece . International Journal of Developmental Disabilities, 66(2), 153-159. Informa UK Limited.
    Type: Article DOI: 10.1080/20473869.2018.1541560 OpenAlex: https://openalex.org/W2900895480
    Crossref OpenAlex
  27. 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
  28. Justine Marcotte , Marie Grandisson , Claire Piquemal , Anabel Boucher , Marie-Ève Rheault , Élise Milot (2020). Supporting Independence at Home of People with Autism Spectrum Disorder: Literature Review . Canadian Journal of Occupational Therapy, 87(2), 100-116. SAGE Publications.
    Type: Article DOI: 10.1177/0008417419890179 OpenAlex: https://openalex.org/W2995783266
    Crossref OpenAlex OpenCitations
  29. Whitney D. Taylor , Virginie Cobigo , Hélène Ouellette‐Kuntz (2019). A family systems perspective on supporting self‐determination in young adults with intellectual and developmental disabilities . Journal of Applied Research in Intellectual Disabilities, 32(5), 1116-1128. Wiley.
    Type: Article DOI: 10.1111/jar.12601 OpenAlex: https://openalex.org/W2939823515
    Crossref OpenAlex OpenCitations
  30. Meng-Chuan Lai , Caroline Kassee , Richard Besney , Sarah Bonato , Laura Hull , Will Mandy et al. (2019). Prevalence of co-occurring mental health diagnoses in the autism population: a systematic review and meta-analysis . The Lancet Psychiatry, 6(10), 819-829. Elsevier BV.
    Type: Article DOI: 10.1016/s2215-0366(19)30289-5 OpenAlex: https://openalex.org/W2936336589
    Crossref OpenAlex OpenCitations
  31. (n.d.). Australian Bureau of Statistics. Data from: Selected Living Cost Indexes Australia. 2022. https://www.abs.gov.au/statistics/economy/price-indexes-and-inflation/selected-living-cost-indexes-australia/sep-2022 [Last accessed: November 5 2022].
    Type: Other
    Crossref
  32. Anne V. Kirby , Marissa L. Diener , Evan E. Dean , Amber Nowell Darlington , Alyssa Myers , Jarrett Henderson (2022). Autistic Adolescents' and Their Parents' Visions for the Future: How Aligned Are They? Autism in Adulthood, 4(1), 32-41. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2020.0061 OpenAlex: https://openalex.org/W3200033356
    Crossref OpenAlex OpenCitations
  33. (n.d.). National Disability Insurance Agency. NDIS: Home and Living. 2022. https://www.ndis.gov.au/participants/home-andliving [Last accessed: November 5 2022].
    Type: Other
    Crossref
  34. Simon M. Bury , Rachel Jellett , Jennifer R. Spoor , Darren Hedley (2023). “It Defines Who I Am” or “It’s Something I Have”: What Language Do [Autistic] Australian Adults [on the Autism Spectrum] Prefer? Journal of Autism and Developmental Disorders, 53(2), 677-687. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-020-04425-3 OpenAlex: https://openalex.org/W3007056653
    Crossref OpenAlex OpenCitations
  36. Parisa Ghanouni , Stephanie Quirke , Jennifer Blok , Amanda Casey (2021). Independent living in adults with autism spectrum disorder: Stakeholders’ perspectives and experiences . Research in Developmental Disabilities, 119, 104085. Elsevier BV.
    Type: Article DOI: 10.1016/j.ridd.2021.104085 OpenAlex: https://openalex.org/W3203243544
    Crossref OpenAlex OpenCitations
  37. David Mason , Victoria Milner , Lauren Clark , Emily Kelly , Rebekah Pyefinch , Francesca Happé (2023). Autistic People and Moving Home: A Systematic Review . Autism in Adulthood, 5(3), 236-247. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2022.0016 OpenAlex: https://openalex.org/W4309306661
    Crossref OpenAlex
  38. Nguyen Lan P (2021). Understanding independent living with autism: the role of the housing environment in the experiences of two autistic men . Eur J Creat Pract Cities Landscap, 3(2), 8.
    Type: Other
    Crossref
  40. Sally Nathan , Christy Newman , Kari Lancaster (2019). Qualitative Interviewing . In Handbook of Research Methods in Health Social Sciences (pp. 391-410). Springer Singapore.
    Type: Book chapter DOI: 10.1007/978-981-10-5251-4_77 OpenAlex: https://openalex.org/W4231908614
    Crossref OpenAlex OpenCitations
  41. Cindy Louis-Delsoin , Ernesto Morales , Alicia Ruiz Rodrigo , Jacqueline Rousseau (2024). Exploring the home environment of adults living with autism spectrum disorder: a qualitative study . International Journal of Developmental Disabilities, 70(2), 213-224. Informa UK Limited.
    Type: Article DOI: 10.1080/20473869.2022.2071103 OpenAlex: https://openalex.org/W4228997292
    Crossref OpenAlex
  42. den Houting J (2021). Participatory and inclusive autism research practice guides . Participatory and Inclusive Autism Research Practice Guides, 192236536X.
    Type: Other
    Crossref