Development of stigma-related support for autistic adults: Insights from the autism community / Emeline HAN in Autism, 27-6 (August 2023)  

Public ISBD [article]  inAutism > 27-6 (August 2023) . - p.1676-1689 Titre : Development of stigma-related support for autistic adults: Insights from the autism community Type de document : Texte imprimé et/ou numérique Auteurs : Emeline HAN, Auteur ; Katrina SCIOR, Auteur ; Eric HEATH, Auteur ; Kana UMAGAMI, Auteur ; Laura CRANE, Auteur Article en page(s) : p.1676-1689 Langues : Anglais (eng) Mots-clés : autistic adults;consultation survey;internalised stigma;intervention development;stigma Index. décimale : PER Périodiques Résumé : Many autistic adults experience public stigma and some internalise this stigma with negative effects on their mental health. While efforts to reduce public stigma are paramount, change can be slow, and interventions to prevent internalised stigma may also be needed. Using a mixed methods online survey, we gathered the views of 144 autistic adults and parents/caregivers of autistic people in the United Kingdom on whether a stigma-related support programme for autistic adults is needed and, if so, what it should 'look' like. Quantitative data (summarised descriptively) showed that most participants felt it was important for autistic adults to have support in managing stigma and revealed diverse preferences in terms of programme delivery, underscoring the need for flexibility. Using reflexive thematic analysis, four main themes were identified from the qualitative data: (1) 'We need to change society not autistic people', (2) 'Stigma is difficult to manage alone', (3) 'Focus on positive, practical support', and (4) 'There is no one size fits all approach'. We discuss the important implications our findings have for how future interventions in this area are framed and delivered.Lay AbstractMany autistic adults experience public stigma, which refers to negative attitudes and treatment from others. Because of that, some autistic adults may also apply unhelpful beliefs to themselves, which is known as internalised stigma. There is some evidence that both public stigma and internalised stigma are linked to poorer mental health in autistic adults. Clearly, it is crucial to change how society thinks and acts towards autistic people. There are several programmes that are trying to do this. But as change can be slow, support may also be needed to help autistic people cope with and challenge stigma. Using an online survey, we gathered the views of 144 autistic adults and parents/caregivers of autistic people in the United Kingdom on whether a stigma support programme for autistic adults is needed and, if so, what it should 'look' like. Most participants felt it was important for autistic adults to have support in managing stigma because of the harmful effects that stigma has on mental health and the challenges that autistic adults face in disclosing their diagnosis. However, participants were also concerned that such a programme could convey the message that autistic people, rather than society, need to change. Participants suggested that the programme should be positive and practical, helping autistic adults to understand and accept themselves, as well as learn context-specific strategies for responding to stigma and/or disclosing their diagnosis. They also stressed that the programme should be flexible and inclusive, recognising that autistic adults have very different needs and preferences. En ligne : http://dx.doi.org/10.1177/13623613221143590 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=509 [article] Development of stigma-related support for autistic adults: Insights from the autism community [Texte imprimé et/ou numérique] / Emeline HAN, Auteur ; Katrina SCIOR, Auteur ; Eric HEATH, Auteur ; Kana UMAGAMI, Auteur ; Laura CRANE, Auteur . - p.1676-1689. Langues : Anglais (eng) in Autism > 27-6 (August 2023) . - p.1676-1689 Mots-clés : autistic adults;consultation survey;internalised stigma;intervention development;stigma Index. décimale : PER Périodiques Résumé : Many autistic adults experience public stigma and some internalise this stigma with negative effects on their mental health. While efforts to reduce public stigma are paramount, change can be slow, and interventions to prevent internalised stigma may also be needed. Using a mixed methods online survey, we gathered the views of 144 autistic adults and parents/caregivers of autistic people in the United Kingdom on whether a stigma-related support programme for autistic adults is needed and, if so, what it should 'look' like. Quantitative data (summarised descriptively) showed that most participants felt it was important for autistic adults to have support in managing stigma and revealed diverse preferences in terms of programme delivery, underscoring the need for flexibility. Using reflexive thematic analysis, four main themes were identified from the qualitative data: (1) 'We need to change society not autistic people', (2) 'Stigma is difficult to manage alone', (3) 'Focus on positive, practical support', and (4) 'There is no one size fits all approach'. We discuss the important implications our findings have for how future interventions in this area are framed and delivered.Lay AbstractMany autistic adults experience public stigma, which refers to negative attitudes and treatment from others. Because of that, some autistic adults may also apply unhelpful beliefs to themselves, which is known as internalised stigma. There is some evidence that both public stigma and internalised stigma are linked to poorer mental health in autistic adults. Clearly, it is crucial to change how society thinks and acts towards autistic people. There are several programmes that are trying to do this. But as change can be slow, support may also be needed to help autistic people cope with and challenge stigma. Using an online survey, we gathered the views of 144 autistic adults and parents/caregivers of autistic people in the United Kingdom on whether a stigma support programme for autistic adults is needed and, if so, what it should 'look' like. Most participants felt it was important for autistic adults to have support in managing stigma because of the harmful effects that stigma has on mental health and the challenges that autistic adults face in disclosing their diagnosis. However, participants were also concerned that such a programme could convey the message that autistic people, rather than society, need to change. Participants suggested that the programme should be positive and practical, helping autistic adults to understand and accept themselves, as well as learn context-specific strategies for responding to stigma and/or disclosing their diagnosis. They also stressed that the programme should be flexible and inclusive, recognising that autistic adults have very different needs and preferences. En ligne : http://dx.doi.org/10.1177/13623613221143590 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=509

Is it still autism? The increasing broadening of the autism spectrum / Marco O. Bertelli ; Veronica Boniotti ; Katrina SCIOR in Autism Research, 18-1 (January 2025)  

Public ISBD [article]  inAutism Research > 18-1 (January 2025) . - p.37-43 Titre : Is it still autism? The increasing broadening of the autism spectrum : Autism Research Type de document : Texte imprimé et/ou numérique Auteurs : Marco O. Bertelli, Auteur ; Veronica Boniotti, Auteur ; Katrina SCIOR, Auteur Article en page(s) : p.37-43 Langues : Anglais (eng) Mots-clés : autism spectrum  autism traits  broad autism phenotype  diagnosis  outcome  subthreshold autism Index. décimale : PER Périodiques Résumé : Abstract Clinical significance of a broad autism phenotype (BAP) seems to be increasingly supported by growing reports of high prevalence of subthreshold autism spectrum disorder (sASD) or autistic traits (AT) in various demographic samples, particularly in individuals with psychiatric conditions. We question this increasing extension of the autism spectrum and its potential negative consequences for clinical services, research, cultural attitudes, and resource allocation, as well as alternative explanations of what is currently attributed to sASD and AT. In modern psychiatry the diagnostic threshold is paramount and associated with a significant impairment of functioning, implying that symptom specificity is more relevant than sensitivity. Within a syndrome, symptoms have to be present together, with the parts related to and interconnected with the whole. Single autism symptomatic dimensions have low syndromic specificity and can be observed in many different mental disorders. For instance, communication problems may present in communication disorders, social-cognitive difficulties can be found in schizophrenia, and rigid and/or repetitive behaviors can be found in obsessive compulsive disorder. One alternative interpretation of AT and/or sASD relates to personality traits. For example, within the Big 5 Model, low openness is associated with a dislike of change and a narrow range of interests, low extraversion with social withdrawal and coldness, and low agreeableness with disinterest in others and disregard for their feelings. These risks of overreliance on non-specific aspects of autism are particularly likely to occur with screening checklists, self-assessment, or assessment by a lay interviewer with only limited expertise in clinical assessment. En ligne : https://doi.org/10.1002/aur.3282 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=546 [article] Is it still autism? The increasing broadening of the autism spectrum : Autism Research [Texte imprimé et/ou numérique] / Marco O. Bertelli, Auteur ; Veronica Boniotti, Auteur ; Katrina SCIOR, Auteur . - p.37-43. Langues : Anglais (eng) in Autism Research > 18-1 (January 2025) . - p.37-43 Mots-clés : autism spectrum  autism traits  broad autism phenotype  diagnosis  outcome  subthreshold autism Index. décimale : PER Périodiques Résumé : Abstract Clinical significance of a broad autism phenotype (BAP) seems to be increasingly supported by growing reports of high prevalence of subthreshold autism spectrum disorder (sASD) or autistic traits (AT) in various demographic samples, particularly in individuals with psychiatric conditions. We question this increasing extension of the autism spectrum and its potential negative consequences for clinical services, research, cultural attitudes, and resource allocation, as well as alternative explanations of what is currently attributed to sASD and AT. In modern psychiatry the diagnostic threshold is paramount and associated with a significant impairment of functioning, implying that symptom specificity is more relevant than sensitivity. Within a syndrome, symptoms have to be present together, with the parts related to and interconnected with the whole. Single autism symptomatic dimensions have low syndromic specificity and can be observed in many different mental disorders. For instance, communication problems may present in communication disorders, social-cognitive difficulties can be found in schizophrenia, and rigid and/or repetitive behaviors can be found in obsessive compulsive disorder. One alternative interpretation of AT and/or sASD relates to personality traits. For example, within the Big 5 Model, low openness is associated with a dislike of change and a narrow range of interests, low extraversion with social withdrawal and coldness, and low agreeableness with disinterest in others and disregard for their feelings. These risks of overreliance on non-specific aspects of autism are particularly likely to occur with screening checklists, self-assessment, or assessment by a lay interviewer with only limited expertise in clinical assessment. En ligne : https://doi.org/10.1002/aur.3282 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=546

'Who, When, How to Share': Pilot study of a new disclosure decision-making programme for autistic adults / Katrina SCIOR ; Kana GRACE ; Eric HEATH ; Simone Dufresne ; Laura CRANE in Autism, 28-8 (August 2024)  

Public ISBD [article]  inAutism > 28-8 (August 2024) . - p.2090-2104 Titre : 'Who, When, How to Share': Pilot study of a new disclosure decision-making programme for autistic adults Type de document : Texte imprimé et/ou numérique Auteurs : Katrina SCIOR, Auteur ; Kana GRACE, Auteur ; Eric HEATH, Auteur ; Simone Dufresne, Auteur ; Laura CRANE, Auteur Article en page(s) : p.2090-2104 Langues : Anglais (eng) Mots-clés : autism  autistic adults  decision-making  disclosure  feasibility  intervention  pilot  programme  stigma  support Index. décimale : PER Périodiques Résumé : In this pilot study, we report on the feasibility, acceptability and potential impact of 'Who, When, How to Share', a new disclosure decision-making programme for autistic adults. We evaluated this programme using pre-post mixed-methods surveys that included questions about participants'experiences of the programme and four psychosocial outcome measures. While 32 autistic adults completed the pre-programme survey and enrolled into the programme, there was high attrition, with only 19 autistic adults completing the programme and post-programme survey. We found that it was feasible to deliver the programme in a guided self-help format, although a minority of participants (who completed the programme or provided reasons for withdrawing from the programme) found it challenging to work through the programme independently and within the study time frame. High levels of satisfaction and positive qualitative feedback also suggested that the programme was acceptable to autistic adults. Participants provided useful recommendations for improvement, such as more interactive elements to enhance engagement. The programme showed potential to improve decisional conflict, disclosure-related distress, stigma-related stress and internalised stigma among autistic adults, though further evaluation of the impact of the programme is needed. Lay abstract 'Who, When, How to Share'is a new programme that aims to support autistic adults in making decisions around sharing their autistic identity with others. The programme involves working through a self-help guide independently over 3?weeks with optional peer support. We wanted to find out if autistic adults would join the programme and find it useful. Thirty-two autistic adults took part in the programme and 19 of them completed it. Most participants who completed the programme liked the programme and found it helpful, but some felt that they needed more time and support to complete it. They suggested that the programme would be more accessible if it was more interactive, such as including videos and other ways to gain feedback on their progress. Surveys filled in by participants before and after the programme suggested that they became more confident and less stressed about sharing their autistic identity with others, but some felt they still needed to build more confidence in order to handle negative attitudes from others. More work is needed to improve and test the programme further. En ligne : https://dx.doi.org/10.1177/13623613231221685 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=533 [article] 'Who, When, How to Share': Pilot study of a new disclosure decision-making programme for autistic adults [Texte imprimé et/ou numérique] / Katrina SCIOR, Auteur ; Kana GRACE, Auteur ; Eric HEATH, Auteur ; Simone Dufresne, Auteur ; Laura CRANE, Auteur . - p.2090-2104. Langues : Anglais (eng) in Autism > 28-8 (August 2024) . - p.2090-2104 Mots-clés : autism  autistic adults  decision-making  disclosure  feasibility  intervention  pilot  programme  stigma  support Index. décimale : PER Périodiques Résumé : In this pilot study, we report on the feasibility, acceptability and potential impact of 'Who, When, How to Share', a new disclosure decision-making programme for autistic adults. We evaluated this programme using pre-post mixed-methods surveys that included questions about participants'experiences of the programme and four psychosocial outcome measures. While 32 autistic adults completed the pre-programme survey and enrolled into the programme, there was high attrition, with only 19 autistic adults completing the programme and post-programme survey. We found that it was feasible to deliver the programme in a guided self-help format, although a minority of participants (who completed the programme or provided reasons for withdrawing from the programme) found it challenging to work through the programme independently and within the study time frame. High levels of satisfaction and positive qualitative feedback also suggested that the programme was acceptable to autistic adults. Participants provided useful recommendations for improvement, such as more interactive elements to enhance engagement. The programme showed potential to improve decisional conflict, disclosure-related distress, stigma-related stress and internalised stigma among autistic adults, though further evaluation of the impact of the programme is needed. Lay abstract 'Who, When, How to Share'is a new programme that aims to support autistic adults in making decisions around sharing their autistic identity with others. The programme involves working through a self-help guide independently over 3?weeks with optional peer support. We wanted to find out if autistic adults would join the programme and find it useful. Thirty-two autistic adults took part in the programme and 19 of them completed it. Most participants who completed the programme liked the programme and found it helpful, but some felt that they needed more time and support to complete it. They suggested that the programme would be more accessible if it was more interactive, such as including videos and other ways to gain feedback on their progress. Surveys filled in by participants before and after the programme suggested that they became more confident and less stressed about sharing their autistic identity with others, but some felt they still needed to build more confidence in order to handle negative attitudes from others. More work is needed to improve and test the programme further. En ligne : https://dx.doi.org/10.1177/13623613231221685 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=533

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