'Am I gonna regret this?': The experiences of diagnostic disclosure in autistic adults / Sheena K. AU-YEUNG in Autism, 29-8 (August 2025)  

Public ISBD [article]  inAutism > 29-8 (August 2025) . - p.2181-2192 Titre : 'Am I gonna regret this?': The experiences of diagnostic disclosure in autistic adults Type de document : texte imprimé Auteurs : Sheena K. AU-YEUNG, Auteur ; Megan FREETH, Auteur ; Andrew R THOMPSON, Auteur Article en page(s) : p.2181-2192 Langues : Anglais (eng) Mots-clés : adults  autism  disclosure  IPA  qualitative Index. décimale : PER Périodiques Résumé : An increasing number of people receive autism diagnoses in adulthood, and there are few studies investigating autistic adults' experiences of disclosing their diagnosis. This study sought to understand autistic adults' experiences of diagnostic disclosure using interpretative phenomenological analysis. Twelve autistic adults, who received their diagnosis in adulthood, participated in one-to-one semi-structured interviews exploring their experiences of diagnostic disclosure. Quality control and reflexivity procedures were used to ensure rigour. Four group experiential themes and nine subthemes emerged: (1) 'Functions of Disclosure' (subthemes: i. Accessing Support; ii. Becoming Myself; iii. Activism and its Burden); (2) 'Approaching the Conversation' (Subthemes: i. Managing Disclosure and Reactions; ii. Disclosure Started Pre-Diagnosis; iii. Impact on Others); (3) 'Negative Effects of Preconceptions' (Subthemes: i. Disbelief and Imposter Syndrome; ii. Not Having My Needs Met; iii. Caution and Avoidance), and (4) 'Acceptance, Openness and Finding Community'. Disclosure served multiple functions for the autistic participants. There was variability in the support that autistic participants received in preparation for disclosing the diagnosis. More consistent post-diagnostic support is required to engage newly diagnosed autistic adults in considering the practicalities and potential consequences of disclosure, its benefits and challenges.Lay Summary An increasing number of people are receiving diagnoses of autism in adulthood. However, there are few studies investigating autistic adults' experiences of 'disclosure', that is, telling others about their autism diagnosis. The aim of this study is to understand autistic adults' experiences of telling other people that they are autistic after receiving a diagnosis during adulthood. Twelve autistic adults were interviewed about their experiences of disclosure. The interviews showed that autistic people disclose to access support, be themselves and to help others. To disclose, autistic people had to make decisions about what information to share and how to handle people?s reactions. Some people started telling others about their potential diagnosis before being formally diagnosed. Disclosure has an impact on people receiving the news of disclosure. Many autistic people experienced not being believed, resulting in unmet needs. This led them to be more careful about future disclosure. However, disclosure also led to some positive experiences, where autistic people felt listened to and accepted by those they disclosed to. This led to receiving support and feeling part of a community. It is recommended that clinicians and autism service providers include discussions about disclosure as part of routine post-diagnostic support. En ligne : https://journals.sagepub.com/doi/abs/10.1177/13623613251337504 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=564 [article] 'Am I gonna regret this?': The experiences of diagnostic disclosure in autistic adults [texte imprimé] / Sheena K. AU-YEUNG, Auteur ; Megan FREETH, Auteur ; Andrew R THOMPSON, Auteur . - p.2181-2192. Langues : Anglais (eng) in Autism > 29-8 (August 2025) . - p.2181-2192 Mots-clés : adults  autism  disclosure  IPA  qualitative Index. décimale : PER Périodiques Résumé : An increasing number of people receive autism diagnoses in adulthood, and there are few studies investigating autistic adults' experiences of disclosing their diagnosis. This study sought to understand autistic adults' experiences of diagnostic disclosure using interpretative phenomenological analysis. Twelve autistic adults, who received their diagnosis in adulthood, participated in one-to-one semi-structured interviews exploring their experiences of diagnostic disclosure. Quality control and reflexivity procedures were used to ensure rigour. Four group experiential themes and nine subthemes emerged: (1) 'Functions of Disclosure' (subthemes: i. Accessing Support; ii. Becoming Myself; iii. Activism and its Burden); (2) 'Approaching the Conversation' (Subthemes: i. Managing Disclosure and Reactions; ii. Disclosure Started Pre-Diagnosis; iii. Impact on Others); (3) 'Negative Effects of Preconceptions' (Subthemes: i. Disbelief and Imposter Syndrome; ii. Not Having My Needs Met; iii. Caution and Avoidance), and (4) 'Acceptance, Openness and Finding Community'. Disclosure served multiple functions for the autistic participants. There was variability in the support that autistic participants received in preparation for disclosing the diagnosis. More consistent post-diagnostic support is required to engage newly diagnosed autistic adults in considering the practicalities and potential consequences of disclosure, its benefits and challenges.Lay Summary An increasing number of people are receiving diagnoses of autism in adulthood. However, there are few studies investigating autistic adults' experiences of 'disclosure', that is, telling others about their autism diagnosis. The aim of this study is to understand autistic adults' experiences of telling other people that they are autistic after receiving a diagnosis during adulthood. Twelve autistic adults were interviewed about their experiences of disclosure. The interviews showed that autistic people disclose to access support, be themselves and to help others. To disclose, autistic people had to make decisions about what information to share and how to handle people?s reactions. Some people started telling others about their potential diagnosis before being formally diagnosed. Disclosure has an impact on people receiving the news of disclosure. Many autistic people experienced not being believed, resulting in unmet needs. This led them to be more careful about future disclosure. However, disclosure also led to some positive experiences, where autistic people felt listened to and accepted by those they disclosed to. This led to receiving support and feeling part of a community. It is recommended that clinicians and autism service providers include discussions about disclosure as part of routine post-diagnostic support. En ligne : https://journals.sagepub.com/doi/abs/10.1177/13623613251337504 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=564

Cognitive Perspective-Taking During Scene Perception in Autism Spectrum Disorder: Evidence From Eye Movements / Sheena K. AU-YEUNG in Autism Research, 7-1 (February 2014)  

Public ISBD [article]  inAutism Research > 7-1 (February 2014) . - p.84-93 Titre : Cognitive Perspective-Taking During Scene Perception in Autism Spectrum Disorder: Evidence From Eye Movements Type de document : texte imprimé Auteurs : Sheena K. AU-YEUNG, Auteur ; Johanna K. KAAKINEN, Auteur ; Valerie BENSON, Auteur Article en page(s) : p.84-93 Langues : Anglais (eng) Mots-clés : autism  Asperger's syndrome  theory of mind  information processing  eye movements  scene perception Index. décimale : PER Périodiques Résumé : The present study examined how eye movements during scene viewing are modulated by adopting psychological perspectives in both adults with autism spectrum disorders (ASD) and typically developing adults. In the current study, participants viewed house scenes with either non-perspective-taking (look for valuable items/features of the house that need fixing) or perspective-taking instructions (imagine that you are a burglar/repairman) while their eye movements were recorded. The eye movement measures revealed that for the “look for the valuable items” and burglar perspective task, the ASD group showed typical relevance effects (the preference to look at schema-relevant compared with schema-irrelevant targets) in their eye movements. However, we found subtle processing differences between the groups that were related to initial orienting to and processing of schema-relevant items for the “look for the features that need fixing” and the repairman perspective-taking task. There was an absence of a relevance effect for the ASD group for the repairman perspective and its non-perspective-taking equivalent instruction showing that the identification of items relevant to those schemas was more difficult for the ASD group. The present findings suggest that resolving ambiguity may be a defining feature of complex information processing deficits in ASD. En ligne : http://dx.doi.org/10.1002/aur.1352 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=227 [article] Cognitive Perspective-Taking During Scene Perception in Autism Spectrum Disorder: Evidence From Eye Movements [texte imprimé] / Sheena K. AU-YEUNG, Auteur ; Johanna K. KAAKINEN, Auteur ; Valerie BENSON, Auteur . - p.84-93. Langues : Anglais (eng) in Autism Research > 7-1 (February 2014) . - p.84-93 Mots-clés : autism  Asperger's syndrome  theory of mind  information processing  eye movements  scene perception Index. décimale : PER Périodiques Résumé : The present study examined how eye movements during scene viewing are modulated by adopting psychological perspectives in both adults with autism spectrum disorders (ASD) and typically developing adults. In the current study, participants viewed house scenes with either non-perspective-taking (look for valuable items/features of the house that need fixing) or perspective-taking instructions (imagine that you are a burglar/repairman) while their eye movements were recorded. The eye movement measures revealed that for the “look for the valuable items” and burglar perspective task, the ASD group showed typical relevance effects (the preference to look at schema-relevant compared with schema-irrelevant targets) in their eye movements. However, we found subtle processing differences between the groups that were related to initial orienting to and processing of schema-relevant items for the “look for the features that need fixing” and the repairman perspective-taking task. There was an absence of a relevance effect for the ASD group for the repairman perspective and its non-perspective-taking equivalent instruction showing that the identification of items relevant to those schemas was more difficult for the ASD group. The present findings suggest that resolving ambiguity may be a defining feature of complex information processing deficits in ASD. En ligne : http://dx.doi.org/10.1002/aur.1352 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=227

Experience of mental health diagnosis and perceived misdiagnosis in autistic, possibly autistic and non-autistic adults / Sheena K. AU-YEUNG in Autism, 23-6 (August 2019)  

Public ISBD [article]  inAutism > 23-6 (August 2019) . - p.1508-1518 Titre : Experience of mental health diagnosis and perceived misdiagnosis in autistic, possibly autistic and non-autistic adults Type de document : texte imprimé Auteurs : Sheena K. AU-YEUNG, Auteur ; Louise BRADLEY, Auteur ; A. E. ROBERTSON, Auteur ; R. SHAW, Auteur ; Simon BARON-COHEN, Auteur ; Sarah A. CASSIDY, Auteur Article en page(s) : p.1508-1518 Langues : Anglais (eng) Mots-clés : adults  autism spectrum disorders  diagnosis  mixed methods  prevalence  psychiatric comorbidity  qualitative research Index. décimale : PER Périodiques Résumé : Previous research shows that autistic people have high levels of co-occurring mental health conditions. Yet, a number of case reports have revealed that mental health conditions are often misdiagnosed in autistic individuals. A total of 420 adults who identified as autistic, possibly autistic or non-autistic completed an online survey consisting of questions regarding mental health diagnoses they received, whether they agreed with those diagnoses and if not why. Autistic and possibly autistic participants were more likely to report receiving mental health diagnoses compared to non-autistic participants, but were less likely to agree with those diagnoses. Thematic analysis revealed the participants' main reasons for disagreement were that (1) they felt their autism characteristics were being confused with mental health conditions by healthcare professionals and (2) they perceived their own mental health difficulties to be resultant of ASC. Participants attributed these to the clinical barriers they experienced, including healthcare professionals' lack of autism awareness and lack of communication, which in turn prevented them from receiving appropriate support. This study highlights the need for autism awareness training for healthcare professionals and the need to develop tools and interventions to accurately diagnose and effectively treat mental health conditions in autistic individuals. En ligne : http://dx.doi.org/10.1177/1362361318818167 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=403 [article] Experience of mental health diagnosis and perceived misdiagnosis in autistic, possibly autistic and non-autistic adults [texte imprimé] / Sheena K. AU-YEUNG, Auteur ; Louise BRADLEY, Auteur ; A. E. ROBERTSON, Auteur ; R. SHAW, Auteur ; Simon BARON-COHEN, Auteur ; Sarah A. CASSIDY, Auteur . - p.1508-1518. Langues : Anglais (eng) in Autism > 23-6 (August 2019) . - p.1508-1518 Mots-clés : adults  autism spectrum disorders  diagnosis  mixed methods  prevalence  psychiatric comorbidity  qualitative research Index. décimale : PER Périodiques Résumé : Previous research shows that autistic people have high levels of co-occurring mental health conditions. Yet, a number of case reports have revealed that mental health conditions are often misdiagnosed in autistic individuals. A total of 420 adults who identified as autistic, possibly autistic or non-autistic completed an online survey consisting of questions regarding mental health diagnoses they received, whether they agreed with those diagnoses and if not why. Autistic and possibly autistic participants were more likely to report receiving mental health diagnoses compared to non-autistic participants, but were less likely to agree with those diagnoses. Thematic analysis revealed the participants' main reasons for disagreement were that (1) they felt their autism characteristics were being confused with mental health conditions by healthcare professionals and (2) they perceived their own mental health difficulties to be resultant of ASC. Participants attributed these to the clinical barriers they experienced, including healthcare professionals' lack of autism awareness and lack of communication, which in turn prevented them from receiving appropriate support. This study highlights the need for autism awareness training for healthcare professionals and the need to develop tools and interventions to accurately diagnose and effectively treat mental health conditions in autistic individuals. En ligne : http://dx.doi.org/10.1177/1362361318818167 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=403

Eye Movement Sequences during Simple versus Complex Information Processing of Scenes in Autism Spectrum Disorder / Sheena K. AU-YEUNG in Autism Research and Treatment, (June 2011)  

Public ISBD [article]  inAutism Research and Treatment > (June 2011) . - 7 p. Titre : Eye Movement Sequences during Simple versus Complex Information Processing of Scenes in Autism Spectrum Disorder Type de document : texte imprimé Auteurs : Sheena K. AU-YEUNG, Auteur ; Valerie BENSON, Auteur ; Monica S. CASTELHANO, Auteur ; Keith RAYNER, Auteur Année de publication : 2011 Article en page(s) : 7 p. Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Minshew and Goldstein (1998) postulated that autism spectrum disorder (ASD) is a disorder of complex information processing. The current study was designed to investigate this hypothesis. Participants with and without ASD completed two scene perception tasks: a simple “spot the difference” task, where they had to say which one of a pair of pictures had a detail missing, and a complex “which one's weird” task, where they had to decide which one of a pair of pictures looks “weird”. Participants with ASD did not differ from TD participants in their ability to accurately identify the target picture in both tasks. However, analysis of the eye movement sequences showed that participants with ASD viewed scenes differently from normal controls exclusively for the complex task. This difference in eye movement patterns, and the method used to examine different patterns, adds to the knowledge base regarding eye movements and ASD. Our results are in accordance with Minshew and Goldstein's theory that complex, but not simple, information processing is impaired in ASD. En ligne : http://dx.doi.org/10.1155/2011/657383 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=141 [article] Eye Movement Sequences during Simple versus Complex Information Processing of Scenes in Autism Spectrum Disorder [texte imprimé] / Sheena K. AU-YEUNG, Auteur ; Valerie BENSON, Auteur ; Monica S. CASTELHANO, Auteur ; Keith RAYNER, Auteur . - 2011 . - 7 p. Langues : Anglais (eng) in Autism Research and Treatment > (June 2011) . - 7 p. Index. décimale : PER Périodiques Résumé : Minshew and Goldstein (1998) postulated that autism spectrum disorder (ASD) is a disorder of complex information processing. The current study was designed to investigate this hypothesis. Participants with and without ASD completed two scene perception tasks: a simple “spot the difference” task, where they had to say which one of a pair of pictures had a detail missing, and a complex “which one's weird” task, where they had to decide which one of a pair of pictures looks “weird”. Participants with ASD did not differ from TD participants in their ability to accurately identify the target picture in both tasks. However, analysis of the eye movement sequences showed that participants with ASD viewed scenes differently from normal controls exclusively for the complex task. This difference in eye movement patterns, and the method used to examine different patterns, adds to the knowledge base regarding eye movements and ASD. Our results are in accordance with Minshew and Goldstein's theory that complex, but not simple, information processing is impaired in ASD. En ligne : http://dx.doi.org/10.1155/2011/657383 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=141

Processing of Written Irony in Autism Spectrum Disorder: An Eye-Movement Study / Sheena K. AU-YEUNG in Autism Research, 8-6 (December 2015)  

Public ISBD [article]  inAutism Research > 8-6 (December 2015) . - p.749-760 Titre : Processing of Written Irony in Autism Spectrum Disorder: An Eye-Movement Study Type de document : texte imprimé Auteurs : Sheena K. AU-YEUNG, Auteur ; Johanna K. KAAKINEN, Auteur ; Simon P. LIVERSEDGE, Auteur ; Valerie BENSON, Auteur Article en page(s) : p.749-760 Langues : Anglais (eng) Mots-clés : irony, figurative language  autism  eye movements  weak central coherence  complex information processing Index. décimale : PER Périodiques Résumé : Previous research has suggested that individuals with Autism Spectrum Disorders (ASD) have difficulties understanding others communicative intent and with using contextual information to correctly interpret irony. We recorded the eye movements of typically developing (TD) adults ASD adults when they read statements that could either be interpreted as ironic or non-ironic depending on the context of the passage. Participants with ASD performed as well as TD controls in their comprehension accuracy for speaker's statements in both ironic and non-ironic conditions. Eye movement data showed that for both participant groups, total reading times were longer for the critical region containing the speaker's statement and a subsequent sentence restating the context in the ironic condition compared to the non-ironic condition. The results suggest that more effortful processing is required in both ASD and TD participants for ironic compared with literal non-ironic statements, and that individuals with ASD were able to use contextual information to infer a non-literal interpretation of ironic text. Individuals with ASD, however, spent more time overall than TD controls rereading the passages, to a similar degree across both ironic and non-ironic conditions, suggesting that they either take longer to construct a coherent discourse representation of the text, or that they take longer to make the decision that their representation of the text is reasonable based on their knowledge of the world. Autism Res 2015, 8: 749–760. © 2015 International Society for Autism Research, Wiley Periodicals, Inc. En ligne : http://dx.doi.org/10.1002/aur.1490 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=278 [article] Processing of Written Irony in Autism Spectrum Disorder: An Eye-Movement Study [texte imprimé] / Sheena K. AU-YEUNG, Auteur ; Johanna K. KAAKINEN, Auteur ; Simon P. LIVERSEDGE, Auteur ; Valerie BENSON, Auteur . - p.749-760. Langues : Anglais (eng) in Autism Research > 8-6 (December 2015) . - p.749-760 Mots-clés : irony, figurative language  autism  eye movements  weak central coherence  complex information processing Index. décimale : PER Périodiques Résumé : Previous research has suggested that individuals with Autism Spectrum Disorders (ASD) have difficulties understanding others communicative intent and with using contextual information to correctly interpret irony. We recorded the eye movements of typically developing (TD) adults ASD adults when they read statements that could either be interpreted as ironic or non-ironic depending on the context of the passage. Participants with ASD performed as well as TD controls in their comprehension accuracy for speaker's statements in both ironic and non-ironic conditions. Eye movement data showed that for both participant groups, total reading times were longer for the critical region containing the speaker's statement and a subsequent sentence restating the context in the ironic condition compared to the non-ironic condition. The results suggest that more effortful processing is required in both ASD and TD participants for ironic compared with literal non-ironic statements, and that individuals with ASD were able to use contextual information to infer a non-literal interpretation of ironic text. Individuals with ASD, however, spent more time overall than TD controls rereading the passages, to a similar degree across both ironic and non-ironic conditions, suggesting that they either take longer to construct a coherent discourse representation of the text, or that they take longer to make the decision that their representation of the text is reasonable based on their knowledge of the world. Autism Res 2015, 8: 749–760. © 2015 International Society for Autism Research, Wiley Periodicals, Inc. En ligne : http://dx.doi.org/10.1002/aur.1490 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=278

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