'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 et/ou numérique 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 et/ou numérique] / 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

Autistic women?s experiences of self-compassion after receiving their diagnosis in adulthood / Rosemarie B. WILSON in Autism, 27-5 (July 2023)  

Public ISBD [article]  inAutism > 27-5 (July 2023) . - p.1336-1347 Titre : Autistic women?s experiences of self-compassion after receiving their diagnosis in adulthood Type de document : Texte imprimé et/ou numérique Auteurs : Rosemarie B. WILSON, Auteur ; Andrew R. THOMPSON, Auteur ; Georgina ROWSE, Auteur ; Richard SMITH, Auteur ; Amber-Sophie DUGDALE, Auteur ; Megan FREETH, Auteur Article en page(s) : p.1336-1347 Langues : Anglais (eng) Mots-clés : adults;autistic women;diagnosis;health services;interpretative phenomenological analysis;lived experience;qualitative research;self-compassion Index. décimale : PER Périodiques Résumé : Knowledge of autistic individuals' experiences of self-compassion is very limited. This study investigated autistic women?s experiences of self-compassion after receiving their diagnosis in adulthood. Eleven autistic women completed semi-structured interviews analysed using interpretative phenomenological analysis. Three super-ordinate themes were identified: "Disconnect between the autistic self and experience of societal expectations" (the burden of conformity; autism is misunderstood; social challenges; mental health impact); "Unmasking: the process of self-understanding" (autonomy and self-compassion; validation and grief) and "Impact on relationships" (diagnosis disclosure dilemmas; connection and understanding). Frustration with society?s misconceptions of autism and unhelpful thinking styles were presented as barriers to self-compassion. Most participants reported that their diagnosis had led to the development of a greater sense of self-understanding, which facilitated self-compassion. Some participants suggested their own increased understanding of autism facilitated their compassion towards others. Findings from this study have clinical implications for increasing understanding about autistic women?s experiences of self-compassion and possibly ways to facilitate its development, to enhance well-being. Lay abstract Knowledge of autistic individuals' experiences of self-compassion is very limited. This study investigated autistic women?s experiences of self-compassion after receiving their diagnosis in adulthood. Eleven autistic women were interviewed about their experiences of receiving their diagnosis in adulthood and their experiences of self-compassion. Systematic analysis of the interview transcripts revealed common themes in the participants' experiences. Participants reported that their autism diagnosis helped them to better understand themselves, particularly when reflecting on problematic past experiences. After receiving an autism diagnosis, participants described being able to relate to themselves with greater self-kindness compared to previous self-criticism; this included allowing themselves to assert their needs and engage in self-care activities. Participants spoke about having difficult social experiences, including feeling pressure to conform to expectations in society and often feeling misunderstood. The findings highlight the barriers autistic women face obtaining their diagnoses and demonstrate the need for autism training for professionals to support early identification. Findings from this study suggest that interventions aimed at developing self-compassion could support and enhance autistic women?s well-being. En ligne : http://dx.doi.org/10.1177/13623613221136752 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=507 [article] Autistic women?s experiences of self-compassion after receiving their diagnosis in adulthood [Texte imprimé et/ou numérique] / Rosemarie B. WILSON, Auteur ; Andrew R. THOMPSON, Auteur ; Georgina ROWSE, Auteur ; Richard SMITH, Auteur ; Amber-Sophie DUGDALE, Auteur ; Megan FREETH, Auteur . - p.1336-1347. Langues : Anglais (eng) in Autism > 27-5 (July 2023) . - p.1336-1347 Mots-clés : adults;autistic women;diagnosis;health services;interpretative phenomenological analysis;lived experience;qualitative research;self-compassion Index. décimale : PER Périodiques Résumé : Knowledge of autistic individuals' experiences of self-compassion is very limited. This study investigated autistic women?s experiences of self-compassion after receiving their diagnosis in adulthood. Eleven autistic women completed semi-structured interviews analysed using interpretative phenomenological analysis. Three super-ordinate themes were identified: "Disconnect between the autistic self and experience of societal expectations" (the burden of conformity; autism is misunderstood; social challenges; mental health impact); "Unmasking: the process of self-understanding" (autonomy and self-compassion; validation and grief) and "Impact on relationships" (diagnosis disclosure dilemmas; connection and understanding). Frustration with society?s misconceptions of autism and unhelpful thinking styles were presented as barriers to self-compassion. Most participants reported that their diagnosis had led to the development of a greater sense of self-understanding, which facilitated self-compassion. Some participants suggested their own increased understanding of autism facilitated their compassion towards others. Findings from this study have clinical implications for increasing understanding about autistic women?s experiences of self-compassion and possibly ways to facilitate its development, to enhance well-being. Lay abstract Knowledge of autistic individuals' experiences of self-compassion is very limited. This study investigated autistic women?s experiences of self-compassion after receiving their diagnosis in adulthood. Eleven autistic women were interviewed about their experiences of receiving their diagnosis in adulthood and their experiences of self-compassion. Systematic analysis of the interview transcripts revealed common themes in the participants' experiences. Participants reported that their autism diagnosis helped them to better understand themselves, particularly when reflecting on problematic past experiences. After receiving an autism diagnosis, participants described being able to relate to themselves with greater self-kindness compared to previous self-criticism; this included allowing themselves to assert their needs and engage in self-care activities. Participants spoke about having difficult social experiences, including feeling pressure to conform to expectations in society and often feeling misunderstood. The findings highlight the barriers autistic women face obtaining their diagnoses and demonstrate the need for autism training for professionals to support early identification. Findings from this study suggest that interventions aimed at developing self-compassion could support and enhance autistic women?s well-being. En ligne : http://dx.doi.org/10.1177/13623613221136752 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=507

Brief Report: How Adolescents with ASD Process Social Information in Complex Scenes. Combining Evidence from Eye Movements and Verbal Descriptions / Megan FREETH in Journal of Autism and Developmental Disorders, 41-3 (March 2011)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 41-3 (March 2011) . - p.364-371 Titre : Brief Report: How Adolescents with ASD Process Social Information in Complex Scenes. Combining Evidence from Eye Movements and Verbal Descriptions Type de document : Texte imprimé et/ou numérique Auteurs : Megan FREETH, Auteur ; Danielle ROPAR, Auteur ; Peter MITCHELL, Auteur ; Peter CHAPMAN, Auteur ; Sarah LOHER, Auteur Année de publication : 2011 Article en page(s) : p.364-371 Langues : Anglais (eng) Mots-clés : Transcript analysis  Eye tracking  Autism  Social scenes  Gaze following  Emotion processing Index. décimale : PER Périodiques Résumé : We investigated attention, encoding and processing of social aspects of complex photographic scenes. Twenty-four high-functioning adolescents (aged 11–16) with ASD and 24 typically developing matched control participants viewed and then described a series of scenes, each containing a person. Analyses of eye movements and verbal descriptions provided converging evidence that both groups displayed general interest in the person in each scene but the salience of the person was reduced for the ASD participants. Nevertheless, the verbal descriptions revealed that participants with ASD frequently processed the observed person’s emotion or mental state without prompting. They also often mentioned eye-gaze direction, and there was evidence from eye movements and verbal descriptions that gaze was followed accurately. The combination of evidence from eye movements and verbal descriptions provides a rich insight into the way stimuli are processed overall. The merits of using these methods within the same paradigm are discussed. En ligne : http://dx.doi.org/10.1007/s10803-010-1053-4 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=118 [article] Brief Report: How Adolescents with ASD Process Social Information in Complex Scenes. Combining Evidence from Eye Movements and Verbal Descriptions [Texte imprimé et/ou numérique] / Megan FREETH, Auteur ; Danielle ROPAR, Auteur ; Peter MITCHELL, Auteur ; Peter CHAPMAN, Auteur ; Sarah LOHER, Auteur . - 2011 . - p.364-371. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 41-3 (March 2011) . - p.364-371 Mots-clés : Transcript analysis  Eye tracking  Autism  Social scenes  Gaze following  Emotion processing Index. décimale : PER Périodiques Résumé : We investigated attention, encoding and processing of social aspects of complex photographic scenes. Twenty-four high-functioning adolescents (aged 11–16) with ASD and 24 typically developing matched control participants viewed and then described a series of scenes, each containing a person. Analyses of eye movements and verbal descriptions provided converging evidence that both groups displayed general interest in the person in each scene but the salience of the person was reduced for the ASD participants. Nevertheless, the verbal descriptions revealed that participants with ASD frequently processed the observed person’s emotion or mental state without prompting. They also often mentioned eye-gaze direction, and there was evidence from eye movements and verbal descriptions that gaze was followed accurately. The combination of evidence from eye movements and verbal descriptions provides a rich insight into the way stimuli are processed overall. The merits of using these methods within the same paradigm are discussed. En ligne : http://dx.doi.org/10.1007/s10803-010-1053-4 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=118

Brief Report: Patterns of Eye Movements in Face to Face Conversation are Associated with Autistic Traits: Evidence from a Student Sample / Andrius VABALAS in Journal of Autism and Developmental Disorders, 46-1 (January 2016)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 46-1 (January 2016) . - p.305-314 Titre : Brief Report: Patterns of Eye Movements in Face to Face Conversation are Associated with Autistic Traits: Evidence from a Student Sample Type de document : Texte imprimé et/ou numérique Auteurs : Andrius VABALAS, Auteur ; Megan FREETH, Auteur Année de publication : 2016 Article en page(s) : p.305-314 Langues : Anglais (eng) Mots-clés : Social attention  Mobile eye-tracking  Eye movements  Autistic traits Index. décimale : PER Périodiques Résumé : The current study investigated whether the amount of autistic traits shown by an individual is associated with viewing behaviour during a face-to-face interaction. The eye movements of 36 neurotypical university students were recorded using a mobile eye-tracking device. High amounts of autistic traits were neither associated with reduced looking to the social partner overall, nor with reduced looking to the face. However, individuals who were high in autistic traits exhibited reduced visual exploration during the face-to-face interaction overall, as demonstrated by shorter and less frequent saccades. Visual exploration was not related to social anxiety. This study suggests that there are systematic individual differences in visual exploration during social interactions and these are related to amount of autistic traits. En ligne : http://dx.doi.org/10.1007/s10803-015-2546-y Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=278 [article] Brief Report: Patterns of Eye Movements in Face to Face Conversation are Associated with Autistic Traits: Evidence from a Student Sample [Texte imprimé et/ou numérique] / Andrius VABALAS, Auteur ; Megan FREETH, Auteur . - 2016 . - p.305-314. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 46-1 (January 2016) . - p.305-314 Mots-clés : Social attention  Mobile eye-tracking  Eye movements  Autistic traits Index. décimale : PER Périodiques Résumé : The current study investigated whether the amount of autistic traits shown by an individual is associated with viewing behaviour during a face-to-face interaction. The eye movements of 36 neurotypical university students were recorded using a mobile eye-tracking device. High amounts of autistic traits were neither associated with reduced looking to the social partner overall, nor with reduced looking to the face. However, individuals who were high in autistic traits exhibited reduced visual exploration during the face-to-face interaction overall, as demonstrated by shorter and less frequent saccades. Visual exploration was not related to social anxiety. This study suggests that there are systematic individual differences in visual exploration during social interactions and these are related to amount of autistic traits. En ligne : http://dx.doi.org/10.1007/s10803-015-2546-y Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=278

Characteristics of Autism Spectrum Disorder in Sotos Syndrome / Chloe LANE in Journal of Autism and Developmental Disorders, 47-1 (January 2017)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 47-1 (January 2017) . - p.135-143 Titre : Characteristics of Autism Spectrum Disorder in Sotos Syndrome Type de document : Texte imprimé et/ou numérique Auteurs : Chloe LANE, Auteur ; Elizabeth MILNE, Auteur ; Megan FREETH, Auteur Article en page(s) : p.135-143 Langues : Anglais (eng) Mots-clés : Sotos syndrome  Autism spectrum disorder  Behaviour  Social responsiveness scale Index. décimale : PER Périodiques Résumé : Sotos syndrome is a congenital overgrowth disorder with an incidence of approximately 1 in 14,000. This study investigated behavioural characteristics of ASD within a large cohort of individuals with Sotos syndrome (n?=?78). As measured by the Social Responsiveness Scale, second edition (SRS-2), 65 participants (83.33?%) met clinical cut-off (T-score ?60). There was no significant gender difference in symptom severity. There was a significant effect of age, with lower scores observed in early childhood and adulthood, compared to childhood. Furthermore, individuals with Sotos syndrome appear to display a trait profile that is similar to that identified in ASD. Overall, these findings indicate that the majority of individuals with Sotos syndrome display clinically significant behavioural symptomatology associated with ASD. En ligne : http://dx.doi.org/10.1007/s10803-016-2941-z Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=298 [article] Characteristics of Autism Spectrum Disorder in Sotos Syndrome [Texte imprimé et/ou numérique] / Chloe LANE, Auteur ; Elizabeth MILNE, Auteur ; Megan FREETH, Auteur . - p.135-143. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 47-1 (January 2017) . - p.135-143 Mots-clés : Sotos syndrome  Autism spectrum disorder  Behaviour  Social responsiveness scale Index. décimale : PER Périodiques Résumé : Sotos syndrome is a congenital overgrowth disorder with an incidence of approximately 1 in 14,000. This study investigated behavioural characteristics of ASD within a large cohort of individuals with Sotos syndrome (n?=?78). As measured by the Social Responsiveness Scale, second edition (SRS-2), 65 participants (83.33?%) met clinical cut-off (T-score ?60). There was no significant gender difference in symptom severity. There was a significant effect of age, with lower scores observed in early childhood and adulthood, compared to childhood. Furthermore, individuals with Sotos syndrome appear to display a trait profile that is similar to that identified in ASD. Overall, these findings indicate that the majority of individuals with Sotos syndrome display clinically significant behavioural symptomatology associated with ASD. En ligne : http://dx.doi.org/10.1007/s10803-016-2941-z Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=298

A Cross-Cultural Comparison of Autistic Traits in the UK, India and Malaysia / Megan FREETH in Journal of Autism and Developmental Disorders, 43-11 (November 2013)  

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Do Gaze Cues in Complex Scenes Capture and Direct the Attention of High Functioning Adolescents with ASD? Evidence from Eye-tracking / Megan FREETH in Journal of Autism and Developmental Disorders, 40-5 (May 2010)  

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Electrophysiological Evidence of Atypical Spatial Attention in Those with a High Level of Self-reported Autistic Traits / Stephanie A. DUNN in Journal of Autism and Developmental Disorders, 46-6 (June 2016)  

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How accurate are autistic adults and those high in autistic traits at making face-to-face line-of-sight judgements? / Megan FREETH in Autism, 24-6 (August 2020)  

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How healthcare systems are experienced by autistic adults in the United Kingdom: A meta-ethnography / Megan FREETH ; Andrew R. THOMPSON in Autism, 28-9 (September 2024)  

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'I?m not just being difficult .?.?. I?m finding it difficult': A qualitative approach to understanding experiences of autistic parents when interacting with statutory services regarding their autistic child / Sarah RADEV in Autism, 28-6 (June 2024)  

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Intense connection and love: The experiences of autistic mothers / Amber-Sophie DUGDALE in Autism, 26-7 (October 2022)  

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Sensory processing in 16p11.2 deletion and 16p11.2 duplication / Harriet SMITH in Autism Research, 15-11 (November 2022)  

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Social attention patterns of autistic and non-autistic adults when viewing real versus reel people / Beatriz LOPEZ in Autism, 27-8 (November 2023)  

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The distribution of and relationship between autistic traits and social anxiety in a UK student population / Megan FREETH in Autism, 17-5 (September 2013)  

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