'I’m not mad, bad, and dangerous… simply wired differently': Exploring factors contributing to good quality of life with autistic women

Added on 01/11/2024

Type de contenu

Journal article of the type Scientific research ( ; english)

'I’m not mad, bad, and dangerous… simply wired differently': Exploring factors contributing to good quality of life with autistic women published in the journal "Research in autism spectrum disorders" n°112, 13 pages , doi: 10.1016/j.rasd.2024.102338

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

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Summary/Presentation

Background: There is increasing recognition of under-representation of autistic women in the academic literature and the impact of this on understanding, diagnosis, and support. Previous research has suggested that autistic women have poorer quality of life (QoL) than the general population. However, these findings have been established through use of QoL measures based on non-autistic norms and priorities.

Methods: This qualitative study used bottom-up, reflexive thematic analysis methods to explore how ten autistic women defined good QoL, and the factors identified as key to achieving this, using individual semi-structured interviews.

Results: Findings indicate four main themes that represent routes to good QoL: positive sense of self; feeling supported; autonomy; inclusion. Participants noted that being autistic itself was not a determinant of reduced QoL. Instead, participants’ QoL was underpinned by the extent to which participants understood themselves, others understood and accommodated their needs, and the person-environment fit.

Conclusions: The findings of this study align with a positive approach to neurological difference and have implications for diagnosis, post-diagnostic support and applications of current QoL measures for autistic women.

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.


  • C. Sarah Allely (2019). "Understanding and recognising the female phenotype of autism spectrum disorder and the 'camouflage' hypothesis: a systematic PRISMA review". AIA, 5(1). doi:10.1108/aia-09-2018-0036

  • A. Austin, R. Goodman (2017). "The Impact of Social Connectedness and Internalized Transphobic Stigma on Self-Esteem Among Transgender and Gender Non-Conforming Adults". Journal of Homosexuality, 64(6). doi:10.1080/00918369.2016.1236587

  • M. Ayres, J. Parr, J. Rodgers, D. Mason, L. Avery, D. Flynn (2018). "A systematic review of quality of life of adults on the autism spectrum". Autism, 22(7). doi:10.1177/1362361317714988

  • S. Bargiela, R. Steward*, W. Mandy (2016). "The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype". J Autism Dev Disord, 46(10). doi:10.1007/s10803-016-2872-8

  • M. Bearman (2019). "Focus on Methodology: Eliciting rich data: A practical approach to writing semi-structured interview schedules". FoHPE, 20(3). doi:10.11157/fohpe.v20i3.387

  • L. Black, N. Humphrey, J. Marquez (2023). "The influence of minority stress-related experiences on mental wellbeing for trans/gender-diverse and cisgender youth: a comparative longitudinal analysis". R. Soc. open sci., 10(7). doi:10.1098/rsos.221230

  • A. Boyd, S. Van de Velde, G. Vilagut, R. de Graaf, S. O׳Neill, S. Florescu, J. Alonso, V. Kovess-Masfety (2015). "Gender differences in mental disorders and suicidality in Europe: Results from a large cross-sectional population-based study". Journal of Affective Disorders, 173. doi:10.1016/j.jad.2014.11.002

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

  • 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

  • I. Brown, R. Brown (2009). "Choice as an Aspect of Quality of Life for People With Intellectual Disabilities". Policy Practice Intel Disabi, 6(1). doi:10.1111/j.1741-1130.2008.00198.x

  • E. Cage, J. Di Monaco, V. Newell (2018). "Experiences of Autism Acceptance and Mental Health in Autistic Adults". J Autism Dev Disord, 48(2). doi:10.1007/s10803-017-3342-7

  • J. Connell, J. Brazier, A. O’Cathain, M. Lloyd-Jones, S. Paisley (2012). "Quality of life of people with mental health problems: a synthesis of qualitative research". Health Qual Life Outcomes, 10(1). doi:10.1186/1477-7525-10-138

  • J. Gould (2017). "Towards understanding the under-recognition of girls and women on the autism spectrum". Autism, 21(6). doi:10.1177/1362361317706174

  • T. WHOQOL GROUP (1998). "Development of the World Health Organization WHOQOL-BREF Quality of Life Assessment". Psychol. Med., 28(3). doi:10.1017/s0033291798006667

  • A. Head, J. McGillivray, M. Stokes (2014). "Gender differences in emotionality and sociability in children with autism spectrum disorders". Molecular Autism, 5(1). doi:10.1186/2040-2392-5-19

  • E. Hesselmark, S. Plenty, S. Bejerot (2014). "Group cognitive behavioural therapy and group recreational activity for adults with autism spectrum disorders: A preliminary randomized controlled trial". Autism, 18(6). doi:10.1177/1362361313493681

  • L. Graham Holmes, C. Zampella, C. Clements, J. McCleery, B. Maddox, J. Parish‐Morris, M. Udhnani, R. Schultz, J. Miller (2020). "A Lifespan Approach to Patient‐Reported Outcomes and Quality of Life for People on the Autism Spectrum". Autism Research, 13(6). doi:10.1002/aur.2275

  • 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

  • Y. Kamio, N. Inada, T. Koyama (2013). "A nationwide survey on quality of life and associated factors of adults with high-functioning autism spectrum disorders". Autism, 17(1). doi:10.1177/1362361312436848

  • L. Kanfiszer, F. Davies, S. Collins (2017). "'I was just so different': The experiences of women diagnosed with an autism spectrum disorder in adulthood in relation to gender and social relationships". Autism, 21(6). doi:10.1177/1362361316687987

  • G. Khalifa, Z. Sharif, M. Sultan, B. Di Rezze (2020). "Workplace accommodations for adults with autism spectrum disorder: a scoping review". Disability and Rehabilitation, 42(9). doi:10.1080/09638288.2018.1527952

  • S. Yoon Kim (2019). "The experiences of adults with autism spectrum disorder: Self-determination and quality of life". Research in Autism Spectrum Disorders, 60. doi:10.1016/j.rasd.2018.12.002

  • A. Krzeminska, S. Hawse (2020). "Mainstreaming neurodiversity for an inclusive and sustainable future workforce: Autism-spectrum employees". In L. Wood, L. Tan, Y. Breyer, S. Hawse (Eds.), Industry and higher education, Springer, Singapore

  • M. Lai, M. Lombardo, G. Pasco, A. Ruigrok, S. Wheelwright, S. Sadek, B. Chakrabarti, I., S. Baron-Cohen (2011). "A Behavioral Comparison of Male and Female Adults with High Functioning Autism Spectrum Conditions". PLoS ONE, 6(6). doi:10.1371/journal.pone.0020835

  • M. Lai, P. Szatmari (2020). "Sex and gender impacts on the behavioural presentation and recognition of autism". Current Opinion in Psychiatry, 33(2). doi:10.1097/yco.0000000000000575

  • 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

  • H. McConachie, D. Mason, J. Parr, D. Garland, C. Wilson, J. Rodgers (2018). "Enhancing the Validity of a Quality of Life Measure for Autistic People". J Autism Dev Disord, 48(5). doi:10.1007/s10803-017-3402-z

  • S. Menéndez-Espina, J. Antonio Llosa, E. Agulló-Tomás, J. Rodríguez-Suárez, R. Sáiz-Villar, H. Félix Lasheras-Díez, H. De Witte, J. Boada-Grau (2020). "The Influence of Gender Inequality in the Development of Job Insecurity: Differences Between Women and Men". Front. Public Health, 8. doi:10.3389/fpubh.2020.526162

  • S. Mo, N. Viljoen, S. Sharma (2022). "The impact of socio-cultural values on autistic women: An interpretative phenomenological analysis". Autism, 26(4). doi:10.1177/13623613211037896

  • NIHR (2015). "Going The Extra Mile". [online] (Source)

  • F. Orfila, M. Ferrer, R. Lamarca, C. Tebe, A. Domingo-Salvany, J. Alonso (2006). "Gender differences in health-related quality of life among the elderly: The role of objective functional capacity and chronic conditions". Social Science & Medicine, 63(9). doi:10.1016/j.socscimed.2006.06.017

  • C. Peterson (2008). "What is positive psychology, and what is it not?" Psychology Today. [online] (Source)

  • S. Rice, N. Telford, D. Rickwood, A. Parker (2018). "Young men's access to community-based mental health care: qualitative analysis of barriers and facilitators". Journal of Mental Health, 27(1). doi:10.1080/09638237.2016.1276528

  • M. Rutherford, K. McKenzie, T. Johnson, C. Catchpole, A. O’Hare, I. McClure, K. Forsyth, D. McCartney, A. Murray (2016). "Gender ratio in a clinical population sample, age of diagnosis and duration of assessment in children and adults with autism spectrum disorder". Autism, 20(5). doi:10.1177/1362361315617879

  • E. Sairanen, R. Lappalainen, P. Lappalainen, A. Hiltunen (2022). "Effects of an Online Acceptance and Commitment Therapy Intervention on Children's Quality of Life". J Child Fam Stud, 31(4). doi:10.1007/s10826-022-02234-z

  • A. Saxe (2017). "The Theory of Intersectionality: A New Lens for Understanding the Barriers Faced by Autistic Women". CJDS, 6(4). doi:10.15353/cjds.v6i4.386

  • P. Strauss, A. Cook, V. Watson, S. Winter, A. Whitehouse, N. Albrecht, D. Wright Toussaint, A. Lin (2021). "Mental health difficulties among trans and gender diverse young people with an autism spectrum disorder (ASD): Findings from Trans Pathways". Journal of Psychiatric Research, 137. doi:10.1016/j.jpsychires.2021.03.005

  • A. Sturrock, A. Marsden, C. Adams, J. Freed (2020). "Observational and Reported Measures of Language and Pragmatics in Young People with Autism: A Comparison of Respondent Data and Gender Profiles". J Autism Dev Disord, 50(3). doi:10.1007/s10803-019-04288-3

  • A. Sturrock, N. Yau, J. Freed, C. Adams (2020). "Speaking the Same Language? A Preliminary Investigation, Comparing the Language and Communication Skills of Females and Males with High-Functioning Autism". J Autism Dev Disord, 50(5). doi:10.1007/s10803-019-03920-6

  • V. Totsika, D. Felce, M. Kerr, R. Hastings (2010). "Behavior Problems, Psychiatric Symptoms, and Quality of Life for Older Adults With Intellectual Disability With and Without Autism". J Autism Dev Disord, 40(10). doi:10.1007/s10803-010-0975-1

  • A. Washington, J. Randall (2023). "'We're Not Taken Seriously': Describing the Experiences of Perceived Discrimination in Medical Settings for Black Women". J. Racial and Ethnic Health Disparities, 10(2). doi:10.1007/s40615-022-01276-9

  • A. Webster, S. Garvis (2020). "What does success mean for autistic men? A narrative exploration of self-determination". Autism & Developmental Language Impairments, 5 (1), doi:10.1177/2396941520945522

  • A. Webster, S. Garvis (2017). "The importance of critical life moments: An explorative study of successful women with autism spectrum disorder". Autism, 21(6). doi:10.1177/1362361316677719

  • Z. Williams*, K. Gotham (2021). "Assessing general and autism‐relevant quality of life in autistic adults: A psychometric investigation using item response theory". Autism Research, 14(8). doi:10.1002/aur.2519


 
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