The Quest for Acceptance: A Blog-Based Study of Autistic Women's Experiences and Well-Being During Autism Identification and Diagnosis

Harmens, Miriam; Sedgewick, Felicity; Hobson, Hannah

doi:10.1089/aut.2021.0016

Cited by 30 publications

(24 citation statements)

References 46 publications

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“…could contribute to development of depression or anxiety and that diagnosis may help with self‐acceptance (Lai & Baron‐Cohen, 2015 ). Consistent with this, studies of adult‐diagnosed individuals highlight diagnosis as helping individuals to move from self‐criticism to self‐compassion, understanding and acceptance (e.g., Harmens et al, 2022 ; Leedham et al, 2019 ).…”

Section: Discussionmentioning

confidence: 89%

Associations between co‐occurring conditions and age of autism diagnosis: Implications for mental health training and adult autism research

Jadav

Bal

2022

Autism Research

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Adult autism studies are increasingly comprised of later-diagnosed adults, yet little is known about how these adults compare to those diagnosed earlier in life. The present study examines medical and psychiatric conditions endorsed by autistic adults and documents differences between those diagnosed with ASD in childhood versus adulthood, as well as across age groups and sex at birth. 4657 legally independent adults (ages 18-85, M = 33.4 years) with professional ASD diagnoses who completed a medical questionnaire were drawn from the Simons Powering Autism Research Knowledge (SPARK) study. Chi square analyses, t-tests, and logistic regressions were used to compare medical and psychiatric conditions between age groups, sex at birth and adults diagnosed in childhood (before age 21) versus adulthood (at or after 21 years). Overall number of conditions endorsed as being diagnosed by a professional was high, with an average of 1.69 (SD = 2.01) medical or developmental and 2.98 (SD = 2.29) psychiatric conditions reported across the sample. Females were more likely to endorse psychiatric conditions (OR = 1.68). Adultdiagnosed adults were more likely to endorse psychiatric conditions (OR = 2.71) and reported more lifetime psychiatric diagnoses (M = 3.15, SD = 2.23) than their childhood-diagnosed counterparts (M = 2.81, SD = 2.33). These findings underscore the need for research to better understand and treat co-occurring psychiatric conditions in autistic adults and report and consider the age of diagnosis in adult autism samples. Moreover, results suggest it is imperative that mental health professionals receive autism training to promote accurate differential diagnosis and equitable access to mental health care for autistic adults with co-occurring psychiatric conditions. Lay SummaryIn a large sample of independent autistic adults, those diagnosed with ASD after 21 years of age indicated having more psychiatric diagnoses than those diagnosed before 21 years of age. This highlights the importance of considering age of ASD diagnosis in research and underscores a need for autism training in the broader mental health field.

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Section: Discussionmentioning

confidence: 89%

Associations between co‐occurring conditions and age of autism diagnosis: Implications for mental health training and adult autism research

Jadav

Bal

2022

Autism Research

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“…However, the extent to which diagnosis improves well-being has been suggested to rely on the level of acceptance both by oneself and others of autistic women. 11 This study found that autistic women can be exhausted by the diagnostic process, which is exacerbated by the stereotypes they face and the lack of acceptance and understanding of themselves and from others. Therefore, timely diagnosis and an increase in knowledge and understanding around autism, especially autistic women’s presentation, may be key in improving autistic women’s well-being.…”

Section: Introductionmentioning

confidence: 85%

Autistic women’s diagnostic experiences: Interactions with identity and impacts on well-being

Harmens

Sedgewick

Hobson

2022

Womens Health (Lond Engl)

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Objective: There has been suggestion that current diagnostic instruments are not sufficient for detecting and diagnosing autism in women, and research suggests that a lack of diagnosis could negatively impact autistic women’s well-being and identity. This study aimed to explore the well-being and identity of autistic women at three points of their diagnostic journey: self-identifying or awaiting assessment, currently undergoing assessment or recently diagnosed, and more than a year post-diagnosis. Methods: Mixed-methods were used to explore this with 96 women who identified as autistic and within one of these three groups. Participants completed an online questionnaire, and a sub-sample of 24 of these women participated in a semi-structured interview. Results: Well-being was found to differ significantly across groups in three domains: satisfaction with health, psychological health, and environmental health. Validation was found to be a central issue for all autistic women, which impacted their diagnosis, identity, and well-being. The subthemes of don’t forget I’m autistic; what now?; having to be the professional; and no one saw me were also identified. Conclusion: These results suggest that autistic women’s well-being and identity differ in relation to their position on the diagnostic journey in a non-linear manner. We suggest that training on the presentation of autism in women for primary and secondary healthcare professionals, along with improved diagnostic and support pathways for autistic adult women could go some way to support well-being.

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“…Broadly, better EF predicts more camouflaging in autistic adolescents, suggesting that EF skills are needed and afford for camouflaging . Based on autistic people's descriptions of their everyday experiences, camouflaging is resource-greedy, taxing top-down executive functioning capabilities (Bradley et al, 2021;Harmens et al, 2022;Hull et al, 2017). Camouflaging may therefore draw down resources that are already relatively limited, particularly if there is insufficient time to recover from settings in which one camouflages, as suggested by autobiographical accounts and qualitative studies of "autistic burnout" (Mantzalas et al, 2022;Raymaker et al, 2020).…”

Section: Discussionmentioning

confidence: 99%

“…Although (to our knowledge) no study to date has examined associations between perceived stress and camouflaging, the qualitative literature on camouflaging indicates that camouflaging is linked with elevated experiences of stress in autistic adults. These studies have illuminated the lived experience of camouflaging among autistic adults, who describe camouflaging as effortful, exhausting and stressful (Bradley et al, 2021;Harmens et al, 2022;Hull et al, 2017). Indeed, camouflaging is qualitatively linked to "autistic burnout," characterized in part by overwhelming exhaustion and decreased tolerance for otherwise manageable sensory stimuli and social interactions (Mantzalas et al, 2022;Raymaker et al, 2020).…”

Section: Introductionmentioning

confidence: 99%

Perceived stress and emotion regulation mediate associations between camouflaging and internalizing symptomatology among autistic adults

McQuaid¹,

Sadowski²,

Lee³

et al. 2022

Preprint

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Camouflaging is associated with anxiety and depression in autistic adults; however, what drives these associations is unclear. We examined two potential drivers of the association between camouflaging and anxiety/depression: perceived stress and emotion regulation. 787 autistic adults (18.2-78.2 years) recruited via Simons Powering Autism Research (SPARK) Research Match completed questionnaires, including the Camouflaging Autistic Traits Questionnaire (CAT-Q), and measures of autistic traits, depressive and anxious symptomatology, perceived stress, and emotion regulation. Four moderated mediation models were tested. In all models the independent variable was CAT-Q total score, and the moderator variable was birth-sex. The dependent variable was depressive or anxious symptomatology, and the mediator variable was perceived stress or emotion regulation. In what is, to our knowledge, the first study to examine potential drivers of associations between camouflaging and depression/anxiety, we found that perceived stress and emotion regulation each significantly mediated the associations between camouflaging and both depression and anxiety. In the model with perceived stress and anxiety, sex moderated the mediation, with females showing a stronger mediation. There was no significant moderation in any of the other models. We contextualize the findings within the broader literature on camouflaging as a response to stigma and other facets of minority stress.

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The Quest for Acceptance: A Blog-Based Study of Autistic Women's Experiences and Well-Being During Autism Identification and Diagnosis

Abstract: The quest for acceptance: A blog-based study of autistic women's experiences and well-being during autism identification and diagnosis. Autism in Adulthood.

Cited by 30 publications

References 46 publications

Associations between co‐occurring conditions and age of autism diagnosis: Implications for mental health training and adult autism research

Associations between co‐occurring conditions and age of autism diagnosis: Implications for mental health training and adult autism research

Autistic women’s diagnostic experiences: Interactions with identity and impacts on well-being

Perceived stress and emotion regulation mediate associations between camouflaging and internalizing symptomatology among autistic adults

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