Autism in adulthood : challenges and management最新文献

{"title":"<i>Correction to:</i> Exploring the Experiences of Autistic Transgender and Non Binary Adults in Seeking Gender Identity Health Care, by Bruce et al. <i>Autism Adulthood</i> 2023;5(2):191-203; doi: 10.1089/aut.2023.0003.","authors":"","doi":"10.1089/aut.2023.0003.correx","DOIUrl":"https://doi.org/10.1089/aut.2023.0003.correx","url":null,"abstract":"<p><p>[This corrects the article DOI: 10.1089/aut.2023.0003.].</p>","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"5 3","pages":"343"},"PeriodicalIF":0.0,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10468543/pdf/aut.2023.0003.correx.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10147390","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"\"Change Isn't Exactly Easy\": Autistic University Students' Lived Learning Experiences During the COVID-19 Pandemic.","authors":"Jacquie Ballantine, Jess Rocheleau, Jasmin Macarios, George Ross, Natasha Artemeva","doi":"10.1089/aut.2022.0032","DOIUrl":"10.1089/aut.2022.0032","url":null,"abstract":"<p><strong>Background: </strong>The COVID-19 (coronavirus disease 2019) pandemic-related isolation measures caused significant unexpected changes in learning experiences for all university students, including autistic students. So far, there has been a lack of information on autistic university students' lived learning experiences caused by the changes in the teaching delivery formats from face-to-face to online during this time. Our study addressed this gap by investigating eight autistic students' reported learning experiences during the rapid changes caused by the pandemic and discussing student-advocated learning supports.</p><p><strong>Methods: </strong>The participants in this qualitative study were eight formally or self-diagnosed, English-speaking, autistic undergraduate and graduate university students from a mid-sized Canadian university. Participants took part in semi-structured interviews that focused on their learning experiences and preferences before and during the pandemic, including what supports they found helpful. To analyze and interpret the data, autistic and nonautistic researchers used reflexive thematic analysis and a consultative participatory approach.</p><p><strong>Results: </strong>Our findings suggest that individual (i.e., organizational skills; mental health), interactional (i.e., prior experiences interacting with instructors and teaching assistants), and environmental (i.e., sensory environments, class sizes, virtual learning environments) factors, which were interrelated, determined the nature and quality of these autistic students' learning experiences and their academic preferences during the pandemic. We also found that each autistic student reported unique learning experiences and needed individualized supports for their learning.</p><p><strong>Conclusions: </strong>Several interrelated factors (individual, interactional, and environmental) affected the nature and quality of autistic university students' experiences during the pandemic. Each student had unique experiences and needed individualized supports.</p>","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"5 3","pages":"325-334"},"PeriodicalIF":0.0,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10468545/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10151872","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Autistic People and Moving Home: A Systematic Review.","authors":"David Mason, Victoria Milner, Lauren Clark, Emily Kelly, Rebekah Pyefinch, Francesca Happé","doi":"10.1089/aut.2022.0016","DOIUrl":"10.1089/aut.2022.0016","url":null,"abstract":"<p><strong>Background: </strong>While many studies have examined where and with whom autistic people live, very few have looked at autistic people's experience of moving home. Choosing where to live, and being able to move residence, could be important for autonomy, and we therefore undertook a systematic review to identify studies about autistic adults' experience of moving home.</p><p><strong>Methods: </strong>We entered search terms relevant to autism and moving home into six databases and Google Scholar. After screening the titles and abstracts, we identified a final set of articles and screened the full text. We then checked the reference lists for potentially relevant articles; then, we conducted a search for articles that cited our final set of articles. Three raters assessed each included article for methodological quality.</p><p><strong>Results: </strong>The search strategy identified a total of 311 articles (initial search, ancestry searching, articles from other sources). After deduplication, we screened a total of 165 articles for eligibility. A final set of seven articles was identified. Our narrative synthesis of the articles suggests that both autistic people and the relatives of autistic people think living independently is a source of positive personal development. However, autistic people reported that poor employment prospects impacted on their financial independence and hence independent living. Parents highlighted concerns about their offspring's personal care, safety, and the difficulty of navigating the housing system for those autistic people with co-occurring intellectual disability.</p><p><strong>Conclusions: </strong>Taken together, our review suggests that autistic people and those who care for them have a positive view of independent living and are aware of the barriers to achieving this. Our review highlights a gap in the understanding of autistic adults' experience of moving home. We briefly describe our ongoing research project [the \"Moving (as an) Autistic Person\" project] exploring autistic people's experiences of moving house.</p>","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"5 3","pages":"236-247"},"PeriodicalIF":0.0,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10468557/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10143371","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Autism-Related Language Preferences of French-Speaking Autistic Adults: An Online Survey.","authors":"Philippine Geelhand, Fanny Papastamou, Marie Belenger, Elise Clin, Lydia Hickman, Connor T Keating, Sophie Sowden","doi":"10.1089/aut.2022.0056","DOIUrl":"10.1089/aut.2022.0056","url":null,"abstract":"<p><strong>Background: </strong>In recent years, there have been increasing discussions surrounding the appropriate terminology to talk about autism. Initially, this debate revolved around the use of person-first language (e.g., person <i>with autism</i>) versus identity-first language (IFL; e.g., <i>autistic</i> person) but has recently expanded to other autism-related terms (e.g., deficits). However, to date, studies investigating autism-related language preferences have been limited to English-speaking countries, and little is known about preferences in other languages. This study addresses this gap by investigating the language preferences of French-speaking autistic adults.</p><p><strong>Methods: </strong>Five hundred and forty-one French-speaking autistic adults (formal diagnosis and self-identified) completed an online survey where they selected terms they preferred to use to talk about: (1) the nomenclature of autism; (2) an autistic person; (3) someone's autistic identity; (4) autism more broadly; (5) the abilities of autistic people; and (6) people without a diagnosis of autism. Participants also revealed more about their language preferences via an open-text response.</p><p><strong>Results: </strong>The most preferred terms were \"Autisme,\" \"Personne autiste,\" \"Autiste,\" \"Est Autiste,\" \"Différence neurologique/cérébrale,\" \"Différences,\" \"Difficultés,\" \"Personne neurotypique,\" \"Neurotypique,\" and \"Personne non-autiste.\" To better understand these preferences, participants' open comments were analyzed, revealing further support for IFL and the social model of disability, and a preference for simple, precise, and validated terms.</p><p><strong>Conclusions: </strong>These results are consistent with autism terminology preferences in English-speaking countries and provide additional insight into the reasons underlying these preferences. Such work has implications for informing the language of researchers, clinicians, and other professionals in the field, as well as the general public.</p>","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"5 3","pages":"275-288"},"PeriodicalIF":0.0,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10499185/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10321400","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Evaluation of an Autism Training in a Much-Needed Context: The Case of France.","authors":"Sabine Saade, Benoît Bockstal-Fieulaine, Kristen Gillespie-Lynch, Chrystel Besche-Richard, Émilie Boujut, Ashley Johnson Harrison, Émilie Cappe","doi":"10.1089/aut.2022.0080","DOIUrl":"10.1089/aut.2022.0080","url":null,"abstract":"<p><strong>Background: </strong>Autistic people in France have called for community education to reduce autism stigma. As such, training is needed to help university students appreciate autistic peers and autistic people they may work with in their future careers.</p><p><strong>Methods: </strong>We adapted an autistic-affirming training from a training developed in other cultural contexts and evaluated it with 107 university students in France using a pretest-post-test design.</p><p><strong>Results: </strong>Questionnaire responses suggested that our brief online training helped improve attitudes toward inclusion, autism knowledge, and stigma among future educators and psychologists in France. Participants' open-ended definitions of autism revealed increased alignment with the neurodiversity movement after training.</p><p><strong>Conclusions: </strong>Findings suggest that wider-scale autistic-led adaptations of autism trainings like the one described in this report could begin to ameliorate autism stigma in France.</p>","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"5 3","pages":"289-300"},"PeriodicalIF":0.0,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10468555/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10143375","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Toward Autism-Friendly Magnetic Resonance Imaging: Exploring Autistic Individuals' Experiences of Magnetic Resonance Imaging Scans in the United Kingdom, a Cross-Sectional Survey.","authors":"Nikolaos Stogiannos, Jane M Harvey-Lloyd, Andrea Brammer, Karen Cleaver, Jonathan P McNulty, Cláudia Sá Dos Reis, Barbara Nugent, Clare Simcock, Tracy O'Regan, Dermot Bowler, Sophia Parveen, Keith Marais, Georgia Pavlopoulou, Chris Papadopoulos, Sebastian B Gaigg, Christina Malamateniou","doi":"10.1089/aut.2022.0051","DOIUrl":"10.1089/aut.2022.0051","url":null,"abstract":"<p><strong>Background: </strong>Autistic individuals might undergo a magnetic resonance imaging (MRI) examination for clinical concerns or research. Increased sensory stimulation, lack of appropriate environmental adjustments, or lack of streamlined communication in the MRI suite may pose challenges to autistic patients and render MRI scans inaccessible. This study aimed at (i) exploring the MRI scan experiences of autistic adults in the United Kingdom; (ii) identifying barriers and enablers toward successful and safe MRI examinations; (iii) assessing autistic individuals' satisfaction with MRI service; and (iv) informing future recommendations for practice improvement.</p><p><strong>Methods: </strong>We distributed an online survey to the autistic community on social media, using snowball sampling. Inclusion criteria were: being older than 16, have an autism diagnosis or self-diagnosis, self-reported capacity to consent, and having had an MRI scan in the United Kingdom. We used descriptive statistics for demographics, inferential statistics for group comparisons/correlations, and content analysis for qualitative data.</p><p><strong>Results: </strong>We received 112 responses. A total of 29.6% of the respondents reported not being sent any information before the scan. Most participants (68%) confirmed that radiographers provided detailed information on the day of the examination, but only 17.1% reported that radiographers offered some reasonable environmental adjustments. Only 23.2% of them confirmed they disclosed their autistic identity when booking MRI scanning. We found that quality of communication, physical environment, patient emotions, staff training, and confounding societal factors impacted their MRI experiences. Autistic individuals rated their overall MRI experience as neutral and reported high levels of claustrophobia (44.8%).</p><p><strong>Conclusion: </strong>This study highlighted a lack of effective communication and coordination of care, either between health care services or between patients and radiographers, and lack of reasonable adjustments as vital for more accessible and person-centered MRI scanning for autistic individuals. Enablers of successful scans included effective communication, adjusted MRI environment, scans tailored to individuals' needs/preferences, and well-trained staff.</p>","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"5 3","pages":"248-262"},"PeriodicalIF":0.0,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10468562/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10151875","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Imagining Neurodivergent Futures from the Belly of the Identity Machine: Neurodiversity, Biosociality, and Strategic Essentialism.","authors":"Jacky Manidoomakwakwe Ellis","doi":"10.1089/aut.2021.0075","DOIUrl":"10.1089/aut.2021.0075","url":null,"abstract":"<p><p>Several critiques have emerged of the neurodiversity paradigm and of claims made by activists in the Neurodiversity Movement. These critiques include concerns that the Neurodiveristiy movement downplays the differences between Autistic people. In this article, I argue that the neurodiversity paradigm is a strategically adopted response to current realities. Sometimes, it is strategically necessary to appeal to existing narratives about Autism, or to emphasize solidarity within the Autistic community over the autism spectrum's internal diversity. At times, this can lead activists to neglect a more nuanced articulation of the Neurodiversity paradigm, which allows for the diversity of our community while still calling for solidarity in the face of shared experiences of discrimination. I compare this strategy with strategies of strategic essentialism utilized in the Indigenous Rights movement in Canada. I also explore the ways in which discourses of ableism and racism have historically been intertwined. Both Autistic people and Indigenous people represent diverse communities that must grapple with externally imposed identities to access legal rights, and both identities have been denigrated as mentally inferior by non-Autistic and colonial powers. I conclude that it is sometimes necessary to employ these types of strategies to secure needed resources and protections. I call for both scholars and advocates to take a more intersectional approach to understanding how strategic essentialism is being deployed within the Neurodiversity Movement.</p>","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"5 3","pages":"225-235"},"PeriodicalIF":0.0,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10468558/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10149895","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A Qualitative Study of Autistic Adults' Quality of Life During the COVID-19 Pandemic and Lockdowns.","authors":"Gavin R Stewart, Marguerite Leoni, Rebecca A Charlton, Hannah R Pickard, Francesca Happé","doi":"10.1089/aut.2022.0035","DOIUrl":"10.1089/aut.2022.0035","url":null,"abstract":"<p><strong>Background: </strong>Autistic people experience higher rates of most mental health conditions and report more difficulties with change than nonautistic people. As such, the periods of national stay-at-home orders (known in the United Kingdom as a \"lockdown\") endured since the beginning of the COVID-19 (coronavirus disease 2019) pandemic in March 2020 may have been particularly challenging for autistic people.</p><p><strong>Aim: </strong>This study explored autistic adults' experience of quality of life and well-being during the start of the COVID-19 pandemic (specifically March to August 2020) using open-text responses from an online survey.</p><p><strong>Methods: </strong>In total, 79 autistic adults from the United Kingdom (aged 21-75 years) took part. Participants completed an online survey, including open-text questions on how various factors influencing quality of life, such as social interactions, general health, well-being, and sensory experiences, were impacted by the COVID-19 pandemic and the first set of national lockdowns that occurred between March and August 2020.</p><p><strong>Results: </strong>Thematic analysis created four key themes, each illustrated by several subthemes. These four themes explore (1) health, (2) social changes, (3) support provisions, and (4) adopting new routines. Many participants discussed the impact that the COVID-19 pandemic and the first set of national lockdowns had on their health and expressed concerns regarding the transition out of periods of lockdown, including readjusting to new rules, going back to in-person interactions, and reacclimatizing to high-stimulation sensory environments. However, several participants reported positive experiences of the periods of lockdown, such as reduced commuting, more control over sensory environments, and more time to pursue personal interests and self-care.</p><p><strong>Conclusions: </strong>These findings highlight the importance of giving autistic individuals the support they need to transition back to \"normality\" as COVID-19 becomes endemic.</p>","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"5 3","pages":"311-324"},"PeriodicalIF":0.0,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10468551/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10143370","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The Inter-Relationship of Emotion Regulation, Self-Compassion, and Mental Health in Autistic Adults.","authors":"Ru Ying Cai, Abigail Love, Ainslie Robinson, Vicki Gibbs","doi":"10.1089/aut.2022.0068","DOIUrl":"10.1089/aut.2022.0068","url":null,"abstract":"<p><strong>Background: </strong>Emotion regulation is one of the key factors that influence mental health outcomes in autistic and nonautistic populations. Recent research has also identified self-compassion as a negative correlate of depression and positive correlate of psychological well-being in autistic adults. Empirical evidence from the general population supports the notion that being kind and compassionate toward oneself during stressful and difficult moments can help with one's ability to regulate negative emotions, which then has flow-on effects on mental health outcomes. However, the inter-relationship between self-compassion, emotion regulation, and mental health has not been examined in autistic samples. Therefore, the aim of this study was to determine if emotion regulation mediates the relationship between self-compassion and anxiety or depression in a sample of autistic adults.</p><p><strong>Methods: </strong>Participants were 153 adults (mean_age = 35.70, standard deviation_age = 12.62) who had either self-reported a clinical diagnosis of autism spectrum disorder or self-identified as autistic. They completed an online survey capturing self-compassion, emotion regulation, anxiety, and depression. We hypothesized that emotion regulation would mediate the relationship between self-compassion and anxiety or depression, and self-compassion would not mediate the relationship between emotion regulation and anxiety or depression.</p><p><strong>Results: </strong>As predicted, only emotion regulation mediated the relationship between self-compassion and mental health outcomes. Self-compassion did not mediate the relationship between emotion regulation and mental health outcomes.</p><p><strong>Conclusion: </strong>This study provides preliminary evidence for the role that self-compassion plays in improving emotion regulation and mental health in autistic adults. If this mechanism of emotion regulation mediating the relationship between self-compassion and mental health is consistently found in future studies, then it would be helpful for future research to examine the clinical benefits of including a self-compassion component in emotion regulation interventions to improve mental health outcomes of autistic adults.</p>","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"5 3","pages":"335-342"},"PeriodicalIF":0.0,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10468559/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10525103","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A Special Issue of <i>Autism in Adulthood</i> Dedicated to the Intersection of Autism and the Broad LGBTQ.","authors":"John F Strang, Abigail L Fischbach","doi":"10.1089/aut.2023.0056.editorial","DOIUrl":"10.1089/aut.2023.0056.editorial","url":null,"abstract":"","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"5 2","pages":"109-111"},"PeriodicalIF":0.0,"publicationDate":"2023-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10280169/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9712111","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}