Experiencing independence: Perspectives from autistic adults

Added on 09/04/2025

Type de contenu

Journal article of the type Scientific research ( ; english)

Piyali Bhattacharya, Rose Matthews*, Rae Field, Hannah Heath, Kate Woodcock, Andrew Surtees
Experiencing independence: Perspectives from autistic adults published in the journal "Journal of autism and developmental disorders" Preprint, 16 pages , doi: 10.1007/s10803-025-06812-0

*One co-author has publicly identified as autistic. [Learn more about this mention]

- 8% of authors cited in the bibliography of this resource have publicly identified as autistic (24 out of 284 authors).
- 22% of references cited in this resource contain at least one author who has publicly identified as autistic (20 out of 89 references).

=> Unrestricted access and free

Summary/Presentation

Autism diagnostic criteria relate to difficulties in functioning across multiple developmental domains, that often impact on a person's independence. There are different ways to conceptualise and exercise independence, but no previous studies have questioned how autistic adults do so. This qualitative study aimed to understand how autistic adults define and experience independence. It was designed to further our understanding of how autistic adults account for and use coping strategies to overcome barriers to independent living and navigate their way to their desired level of independence. Twelve semi-structured interviews were conducted with autistic adults living in the United Kingdom. The data were analysed using reflexive thematic analysis. The researchers generated three major themes. The first theme 'Independence is "not a one-size-fits-all"' highlights that there is no one definition or concept of independence for autistic people; these are relative and uniquely individual. The second theme '"Being autistic has its setbacks" in a neurotypical world' describes the obstacles encountered by autistic adults seeking independence within a society that favours neurotypical norms. The third theme 'Finding ways of making it work' captures strategies autistic adults use in achieving or maintaining independence. The findings from this study provide a foundation for future research exploring domains of independence for autistic adults. The perceived desirability of achieving different degrees of in(ter)dependence and the fluctuating nature of selfsufficiency are explored through lived experience. Increasing understanding of barriers and challenges to independence has the potential to empower autistic adults and improve services and support.

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.

  • Ayoubkhani, D., King, S., Bosworth, M., & Pawelek, P. (2021). "Self-Reported Long COVID after Infection with the Omicron Variant in the UK". (Source)

  • Brown, L. X. Z. (2012). "Privilege and the myth of independence [Autistic Hoya]. Privilege and the Myth of Independence". (Source)

  • Clarke, V. (2013). "Successful qualitative research: A practical guide for beginners". SAGE Publications Ltd. (Source)

  • W. Adams (2015). "Conducting Semi‐Structured Interviews". Handbook of Practical Program Evaluation. doi:10.1002/9781119171386.ch19

  • D. Adams, K. Young (2021). "A Systematic Review of the Perceived Barriers and Facilitators to Accessing Psychological Treatment for Mental Health Problems in Individuals on the Autism Spectrum". Rev J Autism Dev Disord, 8(4). doi:10.1007/s40489-020-00226-7

  • E. Baker, K. K.M. Stavropoulos, B. Baker, J. Blacher (2021). "Daily living skills in adolescents with autism spectrum disorder: Implications for intervention and independence". Research in Autism Spectrum Disorders, 83. doi:10.1016/j.rasd.2021.101761

  • L. Bishop-Fitzpatrick, E. Rubenstein (2019). "The physical and mental health of middle aged and older adults on the autism spectrum and the impact of intellectual disability". Research in Autism Spectrum Disorders, 63. doi:10.1016/j.rasd.2019.01.001

  • M. Black, D. Greenwood, J. Choo Chen Hwa, J. Pivac, J. Tang, P. Clarke (2024). "What Are You Worried About? Content and Extent of Worry in Autistic Adults". J Autism Dev Disord, 54(5). doi:10.1007/s10803-023-05963-2

  • M. Botha*, B. Dibb, D. Frost (2022). "'It's being a part of a grand tradition, a grand counter-culture which involves communities': A qualitative investigation of autistic community connectedness". Autism, 26(8). doi:10.1177/13623613221080248

  • 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 (2021). "Can I use TA? Should I use TA? Should Inotuse TA? Comparing reflexive thematic analysis and other pattern‐based qualitative analytic approaches". Couns and Psychother Res, 21(1). doi:10.1002/capr.12360

  • V. Braun, V. 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). doi:10.1080/2159676x.2019.1704846

  • S. Brewster, L. Coleyshaw (2011). "Participation or exclusion? Perspectives of pupils with autistic spectrum disorders on their participation in leisure activities". Brit J Learn Disabil, 39(4). doi:10.1111/j.1468-3156.2010.00665.x

  • M. Burke, C. Li, A. Johnston, A. Kaori Terol (2024). "Promoting Advocacy and Empowerment for Individuals with Intellectual Disabilities and Autism". The International Library of Bioethics. doi:10.1007/978-3-031-61565-8_16

  • D. Chan, J. Doran (2024). "Mental health counseling is rated as most helpful by autistic adults: Service perspectives in adulthood". Autism, 28(5). doi:10.1177/13623613231197446

  • M. Cunningham, M. Diversi (2013). "Aging out: Youths' perspectives on foster care and the transition to independence". Qualitative Social Work, 12(5). doi:10.1177/1473325012445833

  • J. Dachez, A. Ndobo (2018). "Coping Strategies of Adults with High-Functioning Autism: A Qualitative Analysis". J Adult Dev, 25(2). doi:10.1007/s10804-017-9278-5

  • A. DePape, S. Lindsay (2016). "Lived Experiences From the Perspective of Individuals With Autism Spectrum Disorder". Focus Autism Other Dev Disabl, 31(1). doi:10.1177/1088357615587504

  • N. Doyle, A. McDowall, U. Waseem (2022). "Intersectional Stigma for Autistic People at Work: A Compound Adverse Impact Effect on Labor Force Participation and Experiences of Belonging". Autism in Adulthood, 4(4). doi:10.1089/aut.2021.0082

  • J. Evans, E. Krumrei-Mancuso, S. Rouse (2024). "What You Are Hiding Could Be Hurting You: Autistic Masking in Relation to Mental Health, Interpersonal Trauma, Authenticity, and Self-Esteem". Autism in Adulthood, 6(2). doi:10.1089/aut.2022.0115

  • P. Ghanouni, S. Quirke (2023). "Resilience and Coping Strategies in Adults with Autism Spectrum Disorder". J Autism Dev Disord, 53(1). doi:10.1007/s10803-022-05436-y

  • P. Ghanouni, S. Quirke, J. Blok, A. Casey (2021). "Independent living in adults with autism spectrum disorder: Stakeholders' perspectives and experiences". Research in Developmental Disabilities, 119. doi:10.1016/j.ridd.2021.104085

  • K. Gotham, A. Marvin, J. Lounds Taylor, Z. Warren, C. Anderson, P. Law, J. Law, P. Lipkin (2015). "Characterizing the daily life, needs, and priorities of adults with autism spectrum disorder from Interactive Autism Network data". Autism, 19(7). doi:10.1177/1362361315583818

  • A. Graber (2017). "Autism, intellectual disability, and a challenge to our understanding of proxy consent". Med Health Care and Philos, 20(2). doi:10.1007/s11019-016-9745-y

  • A. Grant*, H. Kara (2021). "Considering the Autistic advantage in qualitative research: the strengths of Autistic researchers". Contemporary Social Science, 16(5). doi:10.1080/21582041.2021.1998589

  • E. Harmuth, E. Silletta, A. Bailey, T. Adams, C. Beck, S. Pamela Barbic (2018). "Barriers and Facilitators to Employment for Adults With Autism: A Scoping Review". Annals of International Occupational Therapy, 1(1). doi:10.3928/24761222-20180212-01

  • N. Henninger, J. Lounds Taylor (2013). "Outcomes in adults with autism spectrum disorders: a historical perspective". Autism, 17(1). doi:10.1177/1362361312441266

  • R. Hoekstra, F. Girma, B. Tekola, Z. Yenus (2018). "Nothing about us without us: the importance of local collaboration and engagement in the global study of autism". BJPsych Int., 15(2). doi:10.1192/bji.2017.26

  • J. Hong, L. Bishop-Fitzpatrick, L. Smith, J. Greenberg, M. Mailick (2016). "Factors Associated with Subjective Quality of Life of Adults with Autism Spectrum Disorder: Self-Report Versus Maternal Reports". J Autism Dev Disord, 46(4). doi:10.1007/s10803-015-2678-0

  • P. Howlin (2005). "Outcomes in Autism Spectrum Disorders". Handbook of Autism and Pervasive Developmental Disorders. doi:10.1002/9780470939345.ch7

  • P. Howlin, L. Mawhood, M. Rutter (2000). "Autism and Developmental Receptive Language Disorder—a Follow‐up Comparison in Early Adult Life. II: Social, Behavioural, and Psychiatric Outcomes". Child Psychology Psychiatry, 41(5). doi:10.1111/1469-7610.00643

  • K. Hume, S. Odom (2007). "Effects of an Individual Work System on the Independent Functioning of Students with Autism". J Autism Dev Disord, 37(6). doi:10.1007/s10803-006-0260-5

  • K. Hume, B. Boyd, J. Hamm, S. Kucharczyk (2014). "Supporting Independence in Adolescents on the Autism Spectrum". Remedial and Special Education, 35(2). doi:10.1177/0741932513514617

  • J. Johnson, D. Adkins, S. Chauvin (2020). "A Review of the Quality Indicators of Rigor in Qualitative Research". American Journal of Pharmaceutical Education, 84(1). doi:10.5688/ajpe7120

  • E. Kaplan-Kahn, R. Caplan* (2023). "Combating stigma in autism research through centering autistic voices: a co-interview guide for qualitative research". Front. Psychiatry, 14. doi:10.3389/fpsyt.2023.1248247

  • S. Kapp* (2018). "Social Support, Well-being, and Quality of Life Among Individuals on the Autism Spectrum". Pediatrics, 141(Supplement_4). doi:10.1542/peds.2016-4300n

  • S. Yoon Kim (2024). "Understanding Perspectives of Job Coaches of Supported Employment Programs Working with Adults with Autism". International Journal of Disability, Development and Education, 71(3). doi:10.1080/1034912x.2022.2134557

  • M. Lai, C. Kassee, R. Besney, S. Bonato, L. Hull, W. Mandy, P. Szatmari, S. Ameis (2019). "Prevalence of co-occurring mental health diagnoses in the autism population: a systematic review and meta-analysis". The Lancet Psychiatry, 6(10). doi:10.1016/s2215-0366(19)30289-5

  • L. Lin, P. Huang (2019). "Quality of life and its related factors for adults with autism spectrum disorder". Disability and Rehabilitation, 41(8). doi:10.1080/09638288.2017.1414887

  • L. Lin, S. Yu, Y. Yu (2012). "A study of activities of daily living and employment in adults with autism spectrum disorders in Taiwan". International Journal of Rehabilitation Research, 35(2). doi:10.1097/mrr.0b013e32835108b1

  • T. Lorenz, C. Frischling, R. Cuadros, K. Heinitz (2016). "Autism and Overcoming Job Barriers: Comparing Job-Related Barriers and Possible Solutions in and outside of Autism-Specific Employment". PLoS ONE, 11(1). doi:10.1371/journal.pone.0147040

  • K. MacLennan, C. Woolley, E. @21andsensory, B. Heasman, J. Starns, B. George, C. Manning (2023). "'It Is a Big Spider Web of Things': Sensory Experiences of Autistic Adults in Public Spaces". Autism in Adulthood, 5(4). doi:10.1089/aut.2022.0024

  • K. Malterud, V. Dirk Siersma, A. Dorrit Guassora (2016). "Sample Size in Qualitative Interview Studies". Qual Health Res, 26(13). doi:10.1177/1049732315617444

  • D. Mason, H. McConachie, D. Garland, A. Petrou, J. Rodgers, J. Parr (2018). "Predictors of quality of life for autistic adults". Autism Research, 11(8). doi:10.1002/aur.1965

  • J. McLeod, E. Meanwell, A. Hawbaker (2019). "The Experiences of College Students on the Autism Spectrum: A Comparison to Their Neurotypical Peers". J Autism Dev Disord, 49(6). doi:10.1007/s10803-019-03910-8

  • J. McLeod, A. Hawbaker, E. Meanwell (2021). "The health of college students on the autism spectrum as compared to their neurotypical peers". Autism, 25(3). doi:10.1177/1362361320926070

  • D. Jones McMaughan, C. Lewis, A. McGehee, D. Noreen, E. Parker, M. Criss (2023). "Meaningful Social Inclusion and Mental Well-Being Among Autistic Adolescents and Emerging Adults: Protocol for a Community-Based Mixed Methods Study". JMIR Res Protoc, 13. doi:10.2196/52658

  • G. McQuaid, C. Weiss, A. Job Said, K. Pelphrey, N. Raitano Lee, G. Wallace (2022). "Increased perceived stress is negatively associated with activities of daily living and subjective quality of life in younger, middle, and older autistic adults". Autism Research, 15(8). doi:10.1002/aur.2779

  • D. Miller, J. Rees, A. Pearson* (2021). "'Masking Is Life': Experiences of Masking in Autistic and Nonautistic Adults". Autism in Adulthood, 3(4). doi:10.1089/aut.2020.0083

  • P. Mitchell, E. Sheppard, S. Cassidy (2021). "Autism and the double empathy problem: Implications for development and mental health". British J of Dev Psycho, 39(1). doi:10.1111/bjdp.12350

  • N. Mitter, A. Ali, K. Scior (2019). "Stigma experienced by families of individuals with intellectual disabilities and autism: A systematic review". Research in Developmental Disabilities, 89. doi:10.1016/j.ridd.2019.03.001

  • M. Muniandy, A. Richdale, S. Arnold, J. Trollor, L. Lawson (2022). "Associations between coping strategies and mental health outcomes in autistic adults". Autism Research, 15(5). doi:10.1002/aur.2694

  • W. Nguyen, T. Ownsworth, C. Nicol, D. Zimmerman (2020). "How I See and Feel About Myself: Domain-Specific Self-Concept and Self-Esteem in Autistic Adults". Front. Psychol., 11. doi:10.3389/fpsyg.2020.00913

  • Ozonoff, S., & Schetter, P. L. (2007). Executive dysfunction in autism spectrum disorders. In Executive function in education: From theory to practice (pp. 133–160). (Source)

  • A. Pearson*, K. Rose* (2021). "A Conceptual Analysis of Autistic Masking: Understanding the Narrative of Stigma and the Illusion of Choice". Autism in Adulthood, 3(1). doi:10.1089/aut.2020.0043

  • E. Radulski (2022). "Conceptualising Autistic Masking, Camouflaging, and Neurotypical Privilege: Towards a Minority Group Model of Neurodiversity". Human Development, 66(2). doi:10.1159/000524122

  • I. Schneid, A. Raz (2020). "The mask of autism: Social camouflaging and impression management as coping/normalization from the perspectives of autistic adults". Social Science & Medicine, 248. doi:10.1016/j.socscimed.2020.112826

  • S. Silverio, K. Sheen, A. Bramante, K. Knighting, T. Koops, E. Montgomery, L. November, L. Soulsby, J. Stevenson, M. Watkins, A. Easter, J. Sandall (2022). "Sensitive, Challenging, and Difficult Topics: Experiences and Practical Considerations for Qualitative Researchers". International Journal of Qualitative Methods, 21. doi:10.1177/16094069221124739

  • E. Späth, K. Jongsma (2020). "Autism, autonomy, and authenticity". Med Health Care and Philos, 23(1). doi:10.1007/s11019-019-09909-3

  • A. Spriggs, K. Ayres, C. Trump, C. Taylor (2017). "Building Programs Focused on Daily Living and Adult Independence". Autism and Child Psychopathology Series. doi:10.1007/978-3-319-69983-7_9

  • E. Stark, D. Ali, A. Ayre, N. Schneider, S. Parveen, K. Marais, N. Holmes, R. Pender (2021). "Coproduction with Autistic Adults: Reflections from the Authentistic Research Collective". Autism in Adulthood, 3(2). doi:10.1089/aut.2020.0050

  • C. Thompson, S. Bölte, T. Falkmer, S. Girdler (2018). "To be understood: Transitioning to adult life for people with Autism Spectrum Disorder". PLoS ONE, 13(3). doi:10.1371/journal.pone.0194758

  • L. Trainor, A. Bundon (2021). "Developing the craft: reflexive accounts of doing reflexive thematic analysis". Qualitative Research in Sport, Exercise and Health, 13(5). doi:10.1080/2159676x.2020.1840423

  • A. Turnock, K. Langley, C. R.G. Jones (2022). "Understanding Stigma in Autism: A Narrative Review and Theoretical Model". Autism in Adulthood, 4(1). doi:10.1089/aut.2021.0005

  • M. Wehmeyer (2000). "Assessment of Self-Determination—Negotiating the Minefield". Focus Autism Other Dev Disabl, 15(3). doi:10.1177/108835760001500305

  • E. Wise, M. Smith, P. Rabins (2020). "Correlates of daily functioning in older adults with autism spectrum disorder". Aging & Mental Health, 24(10). doi:10.1080/13607863.2019.1647138

  • R. Wozniak, N. Leezenbaum, J. Northrup, K. West, J. Iverson (2017). "The development of autism spectrum disorders: variability and causal complexity". WIRES Cognitive Science, 8(1-2). doi:10.1002/wcs.1426

  • M. Zimmer‐Gembeck, W. Andrew Collins (2006). "Autonomy Development During Adolescence". Blackwell Handbook of Adolescence. doi:10.1002/9780470756607.ch9

  • K. Zuckerman, O. Lindly, N. Reyes, A. Chavez, M. Cobian, K. Macias, A. Reynolds, K. Smith (2018). "Parent Perceptions of Community Autism Spectrum Disorder Stigma: Measure Validation and Associations in a Multi-site Sample". J Autism Dev Disord, 48(9). doi:10.1007/s10803-018-3586-x

This resource has not (yet) been cited on Bluesky.


 
Summarize/Comment on/Translate this reference?