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

被引:1
作者
Paricos, Arianna [1 ]
Sturrock, Alexandra [2 ,3 ]
Twomey, Katherine [2 ]
Leadbitter, Kathy [1 ]
机构
[1] Div Psychol & Mental Hlth, Manchester, England
[2] Univ Manchester, Div Psychol Commun & Human Neurosci, Manchester, England
[3] Univ Manchester, Div Psychol Commun & Human Neurosci, Manchester M13 9PL, England
基金
美国国家卫生研究院;
关键词
Autism; Quality of life; Qualitative; Women; Neurodiversity; SPECTRUM DISORDER; MENTAL-HEALTH; GENDER-DIFFERENCES; ADULTS; EXPERIENCES; PEOPLE; RATIO;
D O I
10.1016/j.rasd.2024.102338
中图分类号
G76 [特殊教育];
学科分类号
040109 ;
摘要
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.
引用
收藏
页数:13
相关论文
共 58 条
[51]   Observational and Reported Measures of Language and Pragmatics in Young People with Autism: A Comparison of Respondent Data and Gender Profiles [J].
Sturrock, Alexandra ;
Marsden, Antonia ;
Adams, Catherine ;
Freed, Jenny .
JOURNAL OF AUTISM AND DEVELOPMENTAL DISORDERS, 2020, 50 (03) :812-830
[52]   Speaking the Same Language? A Preliminary Investigation, Comparing the Language and Communication Skills of Females and Males with High-Functioning Autism [J].
Sturrock, Alexandra ;
Yau, Natalie ;
Freed, Jenny ;
Adams, Catherine .
JOURNAL OF AUTISM AND DEVELOPMENTAL DISORDERS, 2020, 50 (05) :1639-1656
[53]   Behavior Problems, Psychiatric Symptoms, and Quality of Life for Older Adults With Intellectual Disability With and Without Autism [J].
Totsika, Vasiliki ;
Felce, David ;
Kerr, Michael ;
Hastings, Richard P. .
JOURNAL OF AUTISM AND DEVELOPMENTAL DISORDERS, 2010, 40 (10) :1171-1178
[54]   Elevated rates of autism, other neurodevelopmental and psychiatric diagnoses, and autistic traits in transgender and gender-diverse individuals [J].
Warrier, Varun ;
Greenberg, David M. ;
Weir, Elizabeth ;
Buckingham, Clara ;
Smith, Paula ;
Lai, Meng-Chuan ;
Allison, Carrie ;
Baron-Cohen, Simon .
NATURE COMMUNICATIONS, 2020, 11 (01)
[55]   "We're Not Taken Seriously": Describing the Experiences of Perceived Discrimination in Medical Settings for Black Women [J].
Washington, Ariel ;
Randall, Jill .
JOURNAL OF RACIAL AND ETHNIC HEALTH DISPARITIES, 2023, 10 (02) :883-891
[56]   What does success mean for autistic men? A narrative exploration of self-determination [J].
Webster, Amanda A. ;
Garvis, Susanne .
AUTISM & DEVELOPMENTAL LANGUAGE IMPAIRMENTS, 2020, 5 :1-13
[57]   The importance of critical life moments: An explorative study of successful women with autism spectrum disorder [J].
Webster, Amanda A. ;
Garvis, Susanne .
AUTISM, 2017, 21 (06) :670-677
[58]   Assessing general and autism-relevant quality of life in autistic adults: A psychometric investigation using item response theory [J].
Williams, Zachary J. ;
Gotham, Katherine O. .
AUTISM RESEARCH, 2021, 14 (08) :1633-1644