Helpful or harmful? A scoping review of perceptions and outcomes of autism diagnostic disclosure to others

Thompson‐Hodgetts, Sandra; Labonté, Chantal; Mazumder, Rinita; Phelan, Shanon

doi:10.1016/j.rasd.2020.101598

Cited by 73 publications

(59 citation statements)

References 64 publications

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“…Our findings support a recent scoping review by Thompson-Hodgetts et al (2020), which revealed discrepancies between the perspectives of autistic people and non-autistic people regarding the outcomes of diagnostic disclosure. Research from the perspective of non-autistic people suggests that disclosure generally improves attitudes and behavioural intentions towards autistic individuals, especially when explanatory information about autism is provided with the autism label (Brosnan & Mills, 2016;.…”

Section: Discussionsupporting

confidence: 87%

“…Another reason may be that the positive effects of disclosure do not extend to those possessing high existing levels of stigma towards autistic people (Brosnan & Gavin, 2021;Morrison et al, 2019). Thus, Thompson-Hodgetts et al (2020) rightly warned against the assumption that autistic people should always be encouraged to disclose their diagnosis. Rather, these conflicting results suggest that autistic people may need support and guidance in discerning when, to whom, and how to disclose.…”

Section: Discussionmentioning

confidence: 99%

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A systematic review on autistic people’s experiences of stigma and coping strategies

Han¹,

Scior²,

Avramides³

et al. 2021

Preprint

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Autism can be understood as a concealable stigmatised identity. This is the first systematic review to synthesise the literature on autistic people’s experiences of stigma and coping strategies. 2877 records were screened and 26 studies included in this review. The reviewed literature demonstrates that autistic individuals are acutely aware of being stereotyped, judged, and discriminated by others. Autistic people also show signs of internalising stigma, rendering them more vulnerable to low self-worth and poorer mental health. To manage the impact of stigma, the included studies suggest that autistic individuals may use these strategies: concealment and camouflaging, selective disclosure and self-advocacy, as well as positive reframing and reconstructing identity. However, the evidence is limited and mixed in terms of how helpful and effective these strategies are. Future studies should include autistic populations with a wider range of intellectual abilities and explore interventions that seek to support autistic people in managing stigma. The power of language in perpetuating and challenging stigma also has important implications for research and practice, underscoring the need for researchers and practitioners to reflect carefully on the messages they are communicating about autism.

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Section: Discussionsupporting

confidence: 87%

Section: Discussionmentioning

confidence: 99%

A systematic review on autistic people’s experiences of stigma and coping strategies

Han¹,

Scior²,

Avramides³

et al. 2021

Preprint

View full text Add to dashboard Cite

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“…28 Autistic people face stigma and discrimination, which can harm their mental health and well-being 29 and deter them from disclosing their diagnosis, limiting their access to accommodations. 30 Cage et al 31 reported that increased autism acceptance predicted lower symptoms of depression in autistic adults. Feeling supported and accepted may also protect against autistic burnout, as well as reduced expectations, time off, unmasking, and the ability to do things in an autistic way.…”

Section: What Did the Researchers Do?mentioning

confidence: 99%

What Is Autistic Burnout? A Thematic Analysis of Posts on Two Online Platforms

Mantzalas

Richdale

Adikari

et al. 2022

Autism in Adulthood

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Background: Compared with adults in the general population, autistic adults are more likely to experience poor mental health, which can contribute to increased suicidality. While the autistic community has long identified autistic burnout as a significant mental health risk, to date, only one study has been published. Early research has highlighted the harmful impact of autistic burnout among autistic adults and the urgent need to better understand this phenomenon. Methods: To understand the lived experiences of autistic adults, we used data scraping to extract public posts about autistic burnout from 2 online platforms shared between 2005 and 2019, which yielded 1127 posts. Using reflexive thematic analysis and an inductive ''bottom-up'' approach, we sought to understand the etiology, symptoms, and impact of autistic burnout, as well as prevention and recovery strategies. Two autistic researchers with self-reported experience of autistic burnout reviewed the themes and provided insight and feedback. Results: We identified eight primary themes and three subthemes across the data. (1) Systemic, pervasive lack of autism awareness. (1.1) Discrimination and stigma. (2) A chronic or recurrent condition. (3) Direct impact on health and well-being. (4) A life unlived. (5) A blessing in disguise? (6) Self-awareness and personal control influence risk. (6.1) ''You need enough balloons to manage the weight of the rocks.'' (7) Masking: Damned if you do, damned if you don't. (8) Ask the experts. (8.1) Stronger together. The overarching theme was that a pervasive lack of awareness and stigma about autism underlie autistic burnout. Conclusions: We identified a set of distinct yet interrelated factors that characterize autistic burnout as a recurring condition that can, directly and indirectly, impact autistic people's functioning, mental health, quality of life, and well-being. The findings suggest that increased awareness and acceptance of autism could be key to burnout prevention and recovery.

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“…Because attitudes about autism are highly variable among NA people (Morrison et al, 2019), recent work has begun to identify factors associated with more inclusionary attitudes, with the hope that these may serve as mechanisms for developing more accommodating social environments (Gillespie-Lynch et al, 2020;. A great deal of recent attention has focused on whether diagnostic disclosure increases acceptance of autistic differences among NA people (for a review, see Thompson-Hodgetts et al, 2020). However, disclosing one's diagnosis is a fraught decision for many autistic adolescents and adults (Lindsay et al, 2019;O'Connor et al, 2019;R.…”

Section: Introductionmentioning

confidence: 99%

Effects of autism acceptance training on explicit and implicit biases toward autism

Jones

DeBrabander

Sasson

2021

Autism

108

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Non-autistic adults often hold explicit and implicit biases toward autism that contribute to personal and professional challenges for autistic people. Although previous research indicates that non-autistic adults with higher autism knowledge and familiarity express more inclusionary attitudes, it remains unclear whether training programs designed to promote autism acceptance and understanding affect subsequent implicit and explicit biases toward autism. In this study, non-autistic adults ( N = 238) completed an autism acceptance training featuring factual information and engaging first-person narratives, a general mental health training not mentioning autism, or a no-training control, then responded to surveys assessing their autism knowledge, stigma, and impressions of autistic adults, and completed a novel implicit association task about autism. Non-autistic adults in the autism acceptance training condition reported more positive impressions of autistic adults, demonstrated fewer misconceptions and lower stigma about autism, endorsed higher expectations of autistic abilities, and expressed greater social interest in hypothetical and real autistic people. However, training had no effect on implicit biases, with non-autistic adults associating autism-related labels with unpleasant personal attributes regardless of training condition. These findings suggest that the autism acceptance training program in this study, designed to increase autism knowledge and familiarity among non-autistic people, holds promise for reducing explicit but not implicit biases toward autism. Lay abstract Autistic adults face prejudice from non-autistic people. They are often judged unfairly and left out of social activities because of their differences. This can make it difficult for autistic people to make friends and find jobs. Some training programs have tried to teach autistic people to act more like non-autistic people to help them gain acceptance. Fewer have focused on teaching non-autistic people how to be more autism friendly. In this study, we used a short training video that teaches people about autism. The video was created with the help of autistic adults and included clips of real autistic people. We found that non-autistic people who watched this video had better knowledge about autism and showed more autism-friendly attitudes than those who watched a video about mental health or those who did not watch any video. They were more open to having a relationship with an autistic person and had more positive beliefs about autism. However, our video did not affect people’s unconscious attitudes about autism. People in our study connected autism with unpleasant traits, even if they had watched the autism training video. This suggests that teaching non-autistic people about autism may promote more autism-friendly attitudes, but some beliefs may be harder to change.

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Helpful or harmful? A scoping review of perceptions and outcomes of autism diagnostic disclosure to others

Cited by 73 publications

References 64 publications

A systematic review on autistic people’s experiences of stigma and coping strategies

A systematic review on autistic people’s experiences of stigma and coping strategies

What Is Autistic Burnout? A Thematic Analysis of Posts on Two Online Platforms

Effects of autism acceptance training on explicit and implicit biases toward autism

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