Autism最新文献

{"title":"'I shouldn't have to educate their school about what autism is': Community attitudes and parent reports of autistic primary and secondary school experiences in Australia.","authors":"Sandra Thom-Jones, Chloe S Gordon, Simone Mizzi","doi":"10.1177/13623613251338908","DOIUrl":"https://doi.org/10.1177/13623613251338908","url":null,"abstract":"<p><p>This study aims to understand experiences of inclusion for autistic school students. The study reports on findings from three surveys, one conducted in 2021 with the general population (N = 1983) and two conducted with parents/carers of autistic school students, one in 2020 (N = 2212) and one in 2021 (N = 528). The general population had a favourable attitude towards autistic students receiving supports in school. However, the lived experience of autistic students, as reported on by their parents, highlighted significant gaps in the provision of support. Qualitative data from the 2021 survey with parents of autistic students found that system-level challenges were pervasive, and a lack of inclusion and support caused significant harm to autistic students. Although the perspective is that of the parent rather than the student, this study may provide insight into the experiences of autistic students who otherwise may not engage with traditional research methods. Future research should seek to hear directly from autistic students themselves and to explore case study examples of schools that are excelling in the area of supporting autistic students. These exemplars could be used to advocate for the provision of support in schools and referred to in professional development for school leaders and teachers.Lay abstractThis study explored the experiences of inclusion for autistic students in Australian schools. Our survey in 2021 with the general public (N = 1983) found that people agree that autistic students should receive support in schools. Our surveys with parents of autistic students, one in 2020 (N = 2212) and another in 2021 (N = 528), found many barriers within the school system that make it hard for autistic children to feel included and supported. This lack of support negatively impacts the well-being of autistic children. It is important to note that this study focused on the perspectives of parents, not the students themselves. Future research should identify and learn from schools that are doing a great job supporting autistic students. These examples could be used to advocate for better support for <i>all</i> autistic students and to help train educators to be more effective in meeting the needs of these students.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"13623613251338908"},"PeriodicalIF":5.2,"publicationDate":"2025-05-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144191426","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Consolidating a framework of autistic camouflaging strategies: An integrative systematic review.","authors":"Jacques Nel, Maxine Spedding, Susan Malcolm-Smith","doi":"10.1177/13623613251335472","DOIUrl":"https://doi.org/10.1177/13623613251335472","url":null,"abstract":"<p><p>Autistic 'social camouflaging' research is proliferating. However, the term is multi-definitional. Our integrative systematic review (CRD42022324957) pursued a single-framework, qualitative meta-synthesis of camouflaging in autistic adults. We report specifically on different types of camouflaging strategies and the contextual factors that moderate them. A total of 2346 articles were extracted from online databases, 'Connected Papers' and citation searching - reflecting qualitative data from diagnostically confirmed, or self-identifying, autistic individuals. The results of 28 studies were coded and thematically synthesised, and included 2669 men, women and non-binary individuals above the age of 16. We noted six types of strategies and four contextual factors that modulate them. 'Imitation' played a notable role in facilitating further learning and development of camouflaging strategies, thus shifting one from behavioural suppression to sophisticated compensations. The results encourage researchers to place camouflaging data within this (or other) frameworks. Limitations include data reflecting only a subset of the autistic community, skewed towards women and the United Kingdom, raising questions about the impact that gender and UK culture has on our current understanding of camouflaging.Lay abstractResearch into autistic 'social camouflaging' is gaining momentum. However, with so many different definitions, the term needs better clarification. We thus reviewed existing articles that discuss camouflaging, in order to bring all of the different understandings of adult autistic camouflaging together into a single framework. This article focuses on findings related to different types of camouflaging <i>strategies</i>, and the types of situations that help or hinder individuals when they use such strategies. After screening 2346 articles (which were listed on online research databases) - we arrived at 28 articles that were included in this study. Data were based on the personal reports of 2669 adults (over the age of 16 years) with confirmed, or self-identified, autism. These reports were in English, qualitative, published papers. We noted six types of camouflaging strategies, and four situational factors that influence them. 'Imitation' was noted as a key means by which strategies develop. The results encourage researchers to build on frameworks such as ours. We also found that much of the sample consisted of women from the United Kingdom, and thus, there is a question of how much influence UK culture has on our current picture of camouflaging.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"13623613251335472"},"PeriodicalIF":5.2,"publicationDate":"2025-05-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144191425","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"From awareness to action: Facilitators and advocacy in healthcare by autistic adults.","authors":"Megan Best, RaeAnne Lindsay, Sarah Demissie, Isabelle Burakov, Saury Ramos-Torres, Meghan Burke","doi":"10.1177/13623613251343350","DOIUrl":"https://doi.org/10.1177/13623613251343350","url":null,"abstract":"<p><p>Autistic adults face various psychological and physical health conditions which often require ongoing medical attention. Despite a greater likelihood of health conditions, autistic adults face many systemic barriers in accessing healthcare services. It is important to identify facilitators to healthcare access and recognize the impact of self-advocacy on these experiences. In this qualitative study, we interviewed 15 autistic participants to understand their experienced and desired facilitators when accessing healthcare services, as well as the role of self-advocacy in accessing these services. Overall, participants agreed that formal and informal supports, provider knowledge about autism, and provider openness to providing accommodations served as facilitators. Participants also shared about their experiences related to self-advocacy and accessing healthcare services such as examples of self-advocacy in healthcare, learning to be a self-advocate, and facilitators of self-advocacy. Implications for research and practice are discussed.Lay abstractAutistic adults often have both mental and physical health needs that require ongoing care. However, they often face obstacles when trying to get healthcare. This study aimed to find out what helps autistic adults get the healthcare they need and how self-advocacy, or speaking up for themselves, plays a role. We talked to 15 autistic individuals about their experiences and what they wished for when accessing healthcare. Participants mentioned that support from others, doctors' knowledge about autism, and doctors being willing to make changes as needed per patient need were helpful. They also shared how self-advocacy impacted their healthcare experiences, including examples of how they advocated for themselves and what helped them do so. The study offers insights that could inform future research and healthcare practices.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"13623613251343350"},"PeriodicalIF":5.2,"publicationDate":"2025-05-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144148987","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Autistic young adults' experiences in physical activity: A phenomenological study.","authors":"Ashlyn Barry, Justin A Haegele, Kristen A Pickett, Daniel Schaefer, Luis Columna","doi":"10.1177/13623613251338377","DOIUrl":"https://doi.org/10.1177/13623613251338377","url":null,"abstract":"<p><p>Young adulthood is a key period for establishing lifelong physical activity (PA) habits, yet little is known about how autistic young adults experience PA. The purpose of this study was to explore how autistic young adults make sense of their PA experiences and the meanings they ascribe to those experiences. Thirteen autistic young adults (ages 22-25) participated in semi-structured interviews about their PA experiences. A phenomenological qualitative approach with an interpretivist paradigm guided this study. Participants described how their PA experiences evolved over time. In childhood, many engaged in team sports, often encouraged by their parents. As they transitioned to adulthood, they shifted toward more independent activities (e.g. running, yoga). Social support from friends and teammates was a strong motivator, while personal achievements (e.g. reaching fitness goals) helped to build a sense of pride. Many participants emphasized the mental and emotional benefits of PA, including increased confidence, reduced stress, and a greater sense of control. These findings described how autistic young adults engaged in PA as they moved into adulthood and pointed to important factors to consider when creating supportive PA opportunities for this population.Lay AbstractMany autistic young adults face challenges in staying physically active as they grow older. This study explores how they experience physical activity (PA), what it means to them, and how their participation changes over time. We talked to 13 autistic young adults (ages 22-25) about their PA experiences from childhood to adulthood. We used a qualitative approach to identify key themes in their stories. Participants shared how their experiences with PA changed over time. As children, many played team sports, often because their parents encouraged them to join. As they got older, they preferred activities they could do on their own, like running or yoga. Friends and teammates helped motivate them to stay active, while setting and reaching personal fitness goals gave them a sense of pride. Many also said that PA helped them feel better emotionally, giving them more confidence, reducing stress, and making them feel more in control of their lives. These findings show how PA can positively impact autistic young adults and provide information into how to create better PA opportunities for them. Encouraging independence, building motivation, and promoting social connections can help support their participation in PA.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"13623613251338377"},"PeriodicalIF":5.2,"publicationDate":"2025-05-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144149031","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"'. . . there's so much within the work that we do where all we kind of need is the space and the safety': The experiences of Australian practitioners who support autistic survivors of sexual and domestic violence.","authors":"Jessica Fox, Julie-Anne Carroll, Jodi Death","doi":"10.1177/13623613251344425","DOIUrl":"https://doi.org/10.1177/13623613251344425","url":null,"abstract":"<p><p>Research has found that autistic women experience elevated rates of sexual and domestic violence and may benefit from accessing support to recover. This study aimed to explore the experiences of Australian practitioners and the approaches they use to support the recovery needs of autistic women who are survivors of sexual and domestic violence. Semi-structured interviews were conducted with 14 Australian practitioners to capture their experiences of supporting autistic women who are survivors of sexual and domestic violence. Data from these interviews were analysed using a reflexive thematic analysis, which generated four themes about participants' experiences in supporting autistic survivors: (1) unburdening the processing load of understanding violence and trauma, (2) understanding support and recovery needs as interconnected, (3) lived experience as a therapeutic tool, and (4) the challenges of practicing within unaffirming and invalidating systems. The findings illustrate how Australian practitioners help autistic survivors by accommodating their recovery support needs, and the systematic and structural issues that create barriers to recovery for autistic survivors while putting additional strain on the practitioners who support them. The findings also highlight practice implications around how supporting autistic survivors with interoceptive awareness and understanding their needs within relationships is beneficial to their recovery.Lay AbstractResearch has commonly found that autistic women are more likely than autistic men and non-autistic women to be harmed in their sexual and romantic relationships and may need support in healing from the impacts of these experiences. In this study, we wanted to find out more from the people who provide this support to autistic women. We asked 14 Australian practitioners about what they do to support autistic women who have experienced these types of harm in their relationships, and what makes this harder or easier for them to do. We then analysed the common patterns (themes) in what these practitioners said. From this we found that Australian practitioners often help autistic women to heal by providing a safe and supportive space to process their experiences and recover from what has happened to them. We also found that an important part of the support that practitioners provide autistic survivors is helping them to understand their experiences of violence and build awareness of feelings in their body (interoception). The practitioners in this study also talked about how the autistic women that they support often have bad experiences when getting help from support services and systems that commonly do not meet their needs. This often makes it harder for practitioners to help autistic women heal and a lot of them suggested that services could be made better by learning more about autistic people's different support needs and how to accommodate these.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"13623613251344425"},"PeriodicalIF":5.2,"publicationDate":"2025-05-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144141263","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The impact of state policy on early autism diagnosis: A qualitative investigation.","authors":"Olivia J Lindly, Danielle Abate, Plyce L Fuchu, Jocelyn L Kuhn, Purnima S Mudnal Bharath, Sarah M Asantewaa, Emily Feinberg, Sarabeth Broder-Fingert","doi":"10.1177/13623613251336813","DOIUrl":"https://doi.org/10.1177/13623613251336813","url":null,"abstract":"<p><p>Autism diagnosis before age three to expedite access to critical services is a public health priority in the United States. Still, the average age of autism diagnosis is 49 months with substantial variability across states. By examining policy-defined as laws, regulations, procedures, administrative actions, incentives, or voluntary practices of governments or other institutions-modifiable structural drivers of early (or late) autism diagnosis may be identified. We, therefore, sought to identify policies impacting early autism diagnosis in five states that are part of a larger initiative to improve autism diagnosis (Arizona, California, Connecticut, Massachusetts, and Pennsylvania) and those that exist nationally. We conducted semi-structured interviews from 2021 to 2023 with a purposive sample of 57 autism policy or research experts. The following four themes were identified through conventional content analysis: (1) developmental monitoring is critical; however, developmental screening policies vary within and across states; (2) myriad policy and contextual factors shape early diagnosis pathways within states; (3) early intervention by the state and community-based early childhood programs influence early autism diagnosis; and (4) persistent disparities in early autism diagnosis pathways are affected by policies. Study findings highlight the importance of advancing certain state and federal policies to increase early autism diagnosis.Lay abstractIn the United States, when children on the spectrum are diagnosed before age three, it can help them get the services they need to thrive. There are many differences between states as far as how many children are diagnosed with autism and the average age when they are diagnosed. Some work suggests these differences may be due to state polices, which include the laws and processes governments and organizations follow. Little research has tried to understand the similarities and differences between state policies related to autism diagnosis. Because of this, our study looked at how state policies impact the timing of autism diagnosis in the United States. We interviewed 57 experts in five states and nationally from 2021 to 2023. Four key themes were identified including (1) developmental monitoring often leads to screening, but there is much variation in and across states; (2) family, community, and healthcare factors shape pathways to autism diagnosis in states; (3) early intervention and education programs play a role in autism diagnosis; and (4) systematic differences in access to diagnosis services persist for certain groups of children and families such as those with limited English-speaking abilities. This study's findings point to certain state and federal policy changes or enhancements to reduce the age of autism diagnosis and ameliorate persistent disparities in autism diagnosis.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"13623613251336813"},"PeriodicalIF":5.2,"publicationDate":"2025-05-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144118673","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Methodological challenges and opportunities when studying the course of autism.","authors":"Vanessa Hus Bal, Peter Szatmari, Stelios Georgiades, Stephen J Gentles, Jessica Girault, Patricia Howlin, Meng-Chuan Lai, Virginia Carter Leno, Catherine Lord, Katie Madgett, Stephen J Sheinkopf, Emily Simonoff, Zachary J Williams, Lonnie Zwaigenbaum, Alycia Halladay","doi":"10.1177/13623613251341012","DOIUrl":"https://doi.org/10.1177/13623613251341012","url":null,"abstract":"<p><p>Longitudinal research in autism has contributed a wealth of knowledge about etiological factors, development from childhood through adulthood, life course changes and needs, as well as longer-term adult outcomes for individuals on the spectrum and their family members. This research is essential to better understand the needs of individuals as they age. However, along with the as yet unrealized opportunities to understand an individual in more nuanced ways across time, there are challenges to utilizing this research design that should be considered. These include sample and measurement diversity, retention, outcome measures, analysis, and funding considerations. This article outlines some of the most pressing challenges together with potential solutions to maximize the value of longitudinal research designs that can help address questions that are of high priority to the autism community.Lay AbstractLongitudinal research has been critical to understand the life course of people with autism, including factors which increase the probability of an autism diagnosis, the emergence of early markers, co-occurring psychiatric conditions, predication of future educational and support needs across childhood and adulthood, and understanding what makes each person unique and contributes to the well-being of autistic people and their families. However, these studies take time, patience, investment of families and individuals, scientists and are challenging to all involved. This article will outline some of the issues that have occurred in the past and provide potential solutions to improve the quality of these studies to both the scientific and autistic communities. They include sample and measurement diversity, retention, outcome measures, analysis, and funding considerations. This understanding of the field is important for both scientific research and community engagement in the studies that include the autistic community.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"13623613251341012"},"PeriodicalIF":5.2,"publicationDate":"2025-05-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144118711","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"'Sometimes I'm feeling baffled and they're probably feeling baffled': On the experiences of psychological therapists working with autistic people in a structured primary care service for anxiety disorders and depression.","authors":"Paul K Miller, Samantha Lj Bowden, Natalie Dewison, Barry Ingham, Richard Thwaites, Dave Dagnan","doi":"10.1177/13623613251341610","DOIUrl":"https://doi.org/10.1177/13623613251341610","url":null,"abstract":"<p><p>Autistic people are more likely to experience mental health problems such as anxiety disorder and depression than are the general population. This study reports a qualitative analysis of interview data provided by 12 psychological therapists regarding their experiences of working with autistic people with anxiety disorders and/or depression within a structured primary care mental health service in the north of England. Interviews were analysed using thematic analysis. Four main themes were identified: (1) Experience and Trepidation, (2) Wrong Service, Only Service, (3) Therapeutic Environment and (4) Training and Adaptations. Participating therapists identified challenges in the structure of the services they worked in, the applicability of conventional therapies and the need for autism-specific therapy training ideally led by autistic people. Centrally, participants did not routinely feel fully equipped to separate endemic aspects of autism itself from features of a mental health disorder in an autistic person, which had left some feeling powerless to help in certain cases, or as if they may have done more harm than good. All participants were, however, able to identify positive adaptations made from practical experience, and most reported a growing confidence in working with autistic people.Lay Abstract<b>The experiences of psychological therapists working with autistic people in a primary care service for anxiety disorders and depression</b>We are a group of autistic people, academic researchers and psychological therapists, with some of us being more than one of those things. We started from the knowledge that autistic people are particularly prone to have anxiety disorders and depression. We were, therefore, interested in how current 'talking therapy' services in England might, or might not, be helping autistic people with those problems. To address this issue, we interviewed 12 psychological therapists in the north of England who had experience of working with autistic people with an anxiety disorder, depression or both. We found that the therapists often felt that they were not prepared or trained to give autistic people their best service. The therapists were also concerned that some of the therapies they usually applied did not always work with autistic people, or sometimes even made things worse. They felt it was important, however, that autistic people should keep using the service, as there was no other service available to them if they had an anxiety disorder or depression. There was evidence, however, that talking therapies still had positive effects for autistic people, and that therapists had therefore probably underestimated their positive impact in a lot of cases. Consequently, training was recommended such that psychological therapists might better understand mental health and specific therapy adaptations that help autistic people.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"13623613251341610"},"PeriodicalIF":5.2,"publicationDate":"2025-05-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144118671","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Caregiver concerns for autistic children differ between publicly funded educational and mental health settings: Findings from a community implementation-effectiveness trial.","authors":"Laurel R Benjamin, Aubyn C Stahmer, Anna Lau, Lauren Brookman-Frazee","doi":"10.1177/13623613251337536","DOIUrl":"https://doi.org/10.1177/13623613251337536","url":null,"abstract":"<p><p>This study sought to characterize caregiver concerns for autistic children receiving care in two public service systems-schools and mental health programs-and to identify child and family characteristics associated with these concerns. Caregivers of 353 school-age autistic children in mental health services (<i>n</i> = 192) or schools (<i>n</i> = 161) named, in their own words, the top three concerns for their child. A modified version of Weisz et al.'s Top Problem coding system was developed to expand beyond the original codes, capturing child emotional and behavioral problems, autism features, and adaptive behaviors. Most caregivers (61.8%) identified externalizing behaviors like aggression, as well as social differences (36.3%) and attention difficulties (35.4%) as top problems. Caregivers also mentioned autism-specific concerns related to social responsiveness (54.7%). Participant characteristics, including child age and caregiver race/ethnicity, were associated with concerns. Controlling for child age and caregiver ethnicity, concerns differed by setting; caregivers in mental health (vs. school) settings named more externalizing behaviors, while those in school settings named more restricted repetitive behaviors and social differences. Findings highlight the need to implement setting-specific interventions individualized to caregivers' priorities and to ensure opportunities for cross-system coordination.Lay abstractThis study explored what concerns caregivers have about their autistic children when receiving care from either mental health programs or schools. Caregivers shared, in their own words, the top three concerns they worry about most for their child. Caregivers had many different concerns, including worries about their child's emotions and behaviors, autism-related traits, daily living skills, and ability to manage feelings and behavior. The study also found that caregivers' concerns were linked to family characteristics like their child's age, the caregiver's race or ethnicity, and how many children live in the home. Caregivers' concerns also differed based on where they were getting help. Caregivers in mental health programs were more likely to worry about challenging behaviors like aggression. Caregivers in school settings were more likely to be concerned about their child's social skills and repetitive behaviors. These findings help us better understand what caregivers worry about when seeking support for their child. The findings also show why it is important to use the right strategies in each setting to meet the specific needs of caregivers and their children.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"13623613251337536"},"PeriodicalIF":5.2,"publicationDate":"2025-05-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144075762","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"'Am I gonna regret this?': The experiences of diagnostic disclosure in autistic adults.","authors":"Sheena K Au-Yeung, Megan Freeth, Andrew R Thompson","doi":"10.1177/13623613251337504","DOIUrl":"https://doi.org/10.1177/13623613251337504","url":null,"abstract":"<p><p>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 SummaryAn 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.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"13623613251337504"},"PeriodicalIF":5.2,"publicationDate":"2025-05-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143960858","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}