Using Experience Sampling Methodology to Capture Disclosure Opportunities for Autistic Adults

Love, Abigail M. A.; Edwards, Chris; Cai, Ru Ying; Gibbs, Vicki

doi:10.1089/aut.2022.0090

Cited by 5 publications

(6 citation statements)

References 4 publications

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“…These findings suggest that our users were different from previous study participants and research that may have attracted participants drawn to advocacy and, more importantly, those who felt their personal disclosure opportunities were more positive than negative (e.g. Farsinejad et al, 2022; Huang et al, 2022; Love et al, 2023). In addition, the research was strengthened by the co-production approach that was embedded from conception to dissemination.…”

Section: Discussioncontrasting

confidence: 81%

“…We also found that a lack of understanding about autism leads to fear and anxiety around anticipated autism disclosure or, for others, negative consequences following an actual disclosure experience. This lack of understanding about autism is extremely problematic within employment contexts, a consistent finding in other autism disclosure work (Huang et al, 2022;Johnson & Joshi, 2016;Lindsay et al, 2019;Love et al, 2023;Romualdez, Heasman, et al, 2021;. We were able to capture workplace disclosure outcomes beyond initial experiences by detailing the discrimination that autistic people encountered over time in employment settings, particularly highlighting how common it was for autistic users to share that they felt disclosure led to the loss of job.…”

Section: Discussionmentioning

confidence: 85%

“…Autism disclosure, or choosing to tell others that they are autistic, can be one of the most complex decisions autistic people experience (Botha et al, 2020). Disclosure can result in increased understanding, acceptance, support or strengthened relationships, but it may also expose the autistic person to being dismissed, judged or misunderstood (Huang et al, 2022; Lindsay et al, 2019; Love et al, 2023; Romualdez, Heasman, et al, 2021; Thompson-Hodgetts et al, 2020). Given the potential risks around disclosing, some autistic people are selective in their disclosure and many engage in ‘camouflaging’ or ‘masking’ to hide who they are (Cage & Troxell-Whitman, 2019; Cook et al, 2021; Huang et al, 2022).…”

mentioning

confidence: 99%

“…In addition, questions in surveys and interviews are framed by researchers, again limiting the scope of the information that can be gathered (Lloyd et al, 2019). To address these limitations, Love and colleagues (2023) utilized a smartphone application to record real-time disclosure and non-disclosure experiences of autistic adults over a 2-month period. Their findings detailed the decision-making considerations and varying reactions that autistic adults experienced from others on a day-to-day basis.…”

mentioning

confidence: 99%

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‘Most people have no idea what autism is’: Unpacking autism disclosure using social media analysis

Edwards,

Love,

Jones

et al. 2023

Autism

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Autism disclosure can be a complicated decision that autistic people experience. Positive outcomes can include feelings of acceptance and support, but negative outcomes can include stigma and discrimination. Although a surge in research on this topic has led to more understanding around autism disclosure, the methodologies used may have limited who was contributing to the conversation and data. To overcome this, we analyzed 3 years (2020−2022) of social media data (Reddit and Twitter) as this was public information that did not rely on researcher data collection. Reflexive thematic analysis of 3121 posts led to the generation of four themes: People do not understand autism (with experiences related to employment, dating, healthcare and mental health), autistic people just want privacy and respect, autistic people can lead us forward and non-autistic people need to assume more responsibility. We discuss how autistic adults experience the impact of society’s lack of understanding of autism on a daily basis whether they disclose or not, and that it is everybody’s responsibility to challenge negative stereotypes and promote a more inclusive society. Lay abstract Autism disclosure – that is sharing their autism diagnosis or identity with a person or people – is a difficult decision for many autistic people. While telling people they are autistic can be positive and helpful, it can also create a lot of problems. What we have learnt is that disclosure is really complicated. Rather than asking research participants questions about what might happen, we looked at what people were saying on public social media posts (Reddit and Twitter) about what did happen. We used three years of posts that were related to autism disclosure from a wide range of adults (autistic and non-autistic). Four main ideas were created from our data, with the key finding being that society does not understand autism. This lack of understanding creates problems for autistic people in work, dating, healthcare and mental health. The remaining ideas were that autistic people should have privacy and be treated with respect, that autistic representation can help society and that non-autistic people need to do more to help autistic people. Our findings support that society needs to do more through autism advocacy, better media representation and more public role models. Increasing the accuracy of understanding of autism across society will mean that autistic people can feel safer to disclose if they want to.

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Section: Discussioncontrasting

confidence: 81%

Section: Discussionmentioning

confidence: 85%

mentioning

confidence: 99%

mentioning

confidence: 99%

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‘Most people have no idea what autism is’: Unpacking autism disclosure using social media analysis

Edwards,

Love,

Jones

et al. 2023

Autism

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“…This disparity in stigma may also be echoed in diagnostic disclosure decisions. Although disclosing one’s autism can be a fraught decision for many autistic people that often depends on many internal and external factors ( 61 ), disclosure of schizophrenia may be especially perilous given rampant biases, beliefs, and misinformation about the condition ( 62 ). Disparities in disclosure between the two conditions may in some respects be a reflection of disparities in the stigma attached to them.…”

Section: Discussionmentioning

confidence: 99%

A mixed method comparison of stigma toward autism and schizophrenia and effects of person-first versus identity-first language

Jones,

Sasson

2023

Front. Psychiatry

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IntroductionWhile stigma toward autistic individuals has been well documented, less is known about how autism is perceived relative to other stigmatized disabilities. As a highly stigmatized condition with similar social cognitive features to autism, schizophrenia may offer a useful comparison for stigma. Previous studies have found that autistic people may be perceived more favorably than those with schizophrenia, but little is known about the underlying volitional thoughts that contribute to differences in how these conditions are perceived.MethodsThe present study utilizes a mixed-methods approach, allowing for a detailed understanding of how young adults perceive different diagnostic labels. 533 college undergraduates completed questionnaires reflecting their perceptions of one of eight diagnostic labels: four related to autism (autism, autistic, autism spectrum disorder, or Asperger’s), two related to schizophrenia (schizophrenia or schizophrenic), and two related to an unspecified clinical condition (clinical diagnosis or clinical disorder). Participants also completed an open-ended question regarding their thoughts about, and exposure to, these labels. Responses were compared across broader diagnostic categories (autism, schizophrenia, general clinical condition), with thematic analysis used to assess the broader themes occurring within the open-ended text.ResultsWhile perceptions did not differ significantly for person-first and identity-first language within labels, several differences were apparent across labels. Specifically, quantitative results indicated greater prejudice towards autism and schizophrenia than the generic clinical condition, with schizophrenia associated with more perceived fear and danger, as well as an increased preference for social distance, compared to autism. Patterns in initial codes differed across diagnostic labels, with greater variation in responses about autism than responses about schizophrenia or the general clinical condition. While participants described a range of attitudes toward autism (patronizing, exclusionary, and accepting) and schizophrenia (fear, prejudice, and empathy), they refrained from describing their attitudes toward the general clinical label, highlighting the centrality of a cohesive group identity for the development of stigma. Finally, participants reported a number of misconceptions about autism and schizophrenia, with many believing features such as savant syndrome to be core characteristics of the conditions.ConclusionThese findings offer a more detailed account of how non-autistic individuals view autism and may therefore aid in the development of targeted programs to improve attitudes toward autism.

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To tell or not to tell – disclosure of autism in the workplace

Nīmante

Laganovska

Osgood

2023

International Journal of Developmental Disabilities

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Using Experience Sampling Methodology to Capture Disclosure Opportunities for Autistic Adults

Cited by 5 publications

References 4 publications

‘Most people have no idea what autism is’: Unpacking autism disclosure using social media analysis

‘Most people have no idea what autism is’: Unpacking autism disclosure using social media analysis

A mixed method comparison of stigma toward autism and schizophrenia and effects of person-first versus identity-first language

To tell or not to tell – disclosure of autism in the workplace

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