Autism in adulthood : challenges and management最新文献

{"title":"Reacting, Retreating, Regulating, and Reconnecting: How Autistic Adults in the United Kingdom Use Time Alone for Well-Being.","authors":"Florence Neville, Felicity Sedgewick, Stuart McClean, Jo White, Isabelle Bray","doi":"10.1089/aut.2024.0148","DOIUrl":"10.1089/aut.2024.0148","url":null,"abstract":"<p><strong>Background: </strong>Firsthand accounts by autistic people describe a need for regular time alone. However, there is little in the literature that explores (1) why time alone is desired, (2) how that time is spent, or (3) where that time is spent. This article describes a neurodiversity-informed, qualitative study that demonstrates the importance and purpose of \"alone-time\" for autistic adults.</p><p><strong>Methods: </strong>We interviewed 16 autistic adults living in the United Kingdom about how and where they spent their \"alone-time\" and the benefits experienced from this time. We conducted the interviews online, some using a video link, and some using a synchronously accessed text-based document, according to the participants' preferences.</p><p><strong>Results: </strong>We used Reflexive Thematic Analysis with the interview data to generate four qualitative themes as follows: (1) reacting to social and sensory overwhelm; (2) retreating from social and sensory overwhelm; (3) regulating, recovering, and recharging; and (4) ready to reconnect with others.</p><p><strong>Conclusions: </strong>These themes highlight a need for balancing social activities and spaces with time and space alone and the benefits of creating or protecting spaces, which encourage recovery from overwhelm.</p><p><strong>Community brief: </strong><b>Why is this an important issue?:</b> Autistic people often talk and write about how they need regular time alone for their well-being, but there is very little in the academic literature on the importance of \"alone-time\" or what \"alone-time\" might look like.<b>What was the purpose of this study?:</b> We wanted to explore why autistic people might want time alone, how autistic people like to spend time alone, and where autistic people like to spend time alone.<b>What did the researchers do?:</b> We interviewed 16 autistic adults living in the United Kingdom about how and where they spent their alone-time and what they felt the benefits of alone-time were. Then we analyzed what was said in the interviews using Reflexive Thematic Analysis.<b>What were the results of the study?:</b> Four themes help describe what the autistic adults talked about: (1) reacting to social and sensory overwhelm; (2) retreating from social and sensory overwhelm; (3) regulating, recovering, and recharging; and (4) ready to reconnect with others. These themes highlight how social and sensory environments can be overwhelming, how finding quiet spaces and/or engaging with intense interests can be helpful, and how socializing can be made less overwhelming.<b>What do these findings add to what was already known?:</b> This study is the first to explore why autistic people might choose to spend time away from social spaces, how they choose to spend this time, and where they choose to spend this time. The findings support previous research on sensory and social overwhelm and on well-being strategies that autistic people use to support their own well-be","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"8 1","pages":"79-89"},"PeriodicalIF":0.0,"publicationDate":"2024-07-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13294714/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148347555","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 World's Really Not Set Up for the Neurodivergent Person\": Understanding Emotion Dysregulation from the Perspective of Autistic Adults.","authors":"Kelly B Beck, Kristen T MacKenzie, Tanvi Kumar, Kaitlyn E Breitenfeldt, Judy C Chang, Caitlin M Conner, David L Mandell, Susan W White, Carla A Mazefsky","doi":"10.1089/aut.2023.0214","DOIUrl":"10.1089/aut.2023.0214","url":null,"abstract":"<p><strong>Background: </strong>Emotion dysregulation is associated with mental health challenges and suicidality in autistic adults. Little is known about how emotion dysregulation manifests in adulthood and whether current services adequately support their needs. We explored autistic adults' experiences of emotion dysregulation and identified key contributors to emotion dysregulation to inform future service development.</p><p><strong>Methods: </strong>We performed qualitative semi-structured interviews with autistic adults, in which they shared emotion dysregulation stories. Three researchers developed the codebook using a consensus approach, coded interviews, and completed thematic analyses. Autistic adults were part of our study team and involved at every step.</p><p><strong>Results: </strong>Fifteen autistic adults participated in the interviews. Emotion dysregulation was described in the context of a pervasive lack of control in various settings, most often experienced in health care settings. Limited awareness of internal states (i.e., emotions, sensory) until it was too late was a prominent theme. Many participants described emotion dysregulation as indistinguishable from sensory overload. Interpersonal conflict, largely social rejection because of being misunderstood by a neurotypical person, contributed to difficulty regulating emotions and low perception of self-worth. Participants described feeling powerless in health care settings and workplaces, where they experienced disproportionate and inappropriate responses to their emotion dysregulation, including involuntary sedation, termination of care, and job loss. Most participants described a lack of safety and supports for adaptively coping with emotion dysregulation, leading to tension between the personal costs of masking and the societal consequences of not masking.</p><p><strong>Conclusions: </strong>Autistic adults attributed their emotion dysregulation to a lack of control across all contexts. It is important for autistic adults to develop emotion regulation skills, but more work is needed to understand and remediate the impact of social marginalization on autistic adults, as this directly contributed to instances of dysregulation.</p>","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-06-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12490785/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145234275","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":"Why We Need More Autistic Health Care Professionals and How to Support Them.","authors":"Sara Eileen O'Neil Woods","doi":"10.1089/aut.2023.0099","DOIUrl":"10.1089/aut.2023.0099","url":null,"abstract":"&lt;p&gt;&lt;p&gt;Many autistic characteristics (especially attention to detail, social nonconformity, monotropism, and knowledge of autism) set autistic health care professionals apart as especially well-suited for their fields. Increasing the number of autistic health care professionals will benefit their clients, colleagues, and health care fields as a whole. Autistic health care professionals face many challenges, including being misunderstood and discouraged from participating in their fields. Despite the challenges, many health care professionals are thriving. Autistic connections and solidarity are an important part of helping autistic health care professionals overcome obstacles and succeed. Suggestions for making health care more accommodating of autistic people are offered. Recommendations are also provided for autistic health care professionals looking to find community and meet others in the same position.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Community brief: &lt;/strong&gt;&lt;b&gt;Why is this topic important?:&lt;/b&gt; Autistic people have many characteristics that are well-suited to health care. It can be difficult for autistic health care professionals to become health care professionals, and once they do, their autistic characteristics are sometimes misunderstood instead of appreciated. Autistic health care professionals have many traits that set them apart as being especially good at what they do, but others in their fields may not always be aware of that. The autistic community, and people in general, benefit from autistic health care professionals.&lt;b&gt;What is the purpose of this article?:&lt;/b&gt; The purpose of this article is to draw attention to the various ways that autistic characteristics are beneficial in health care and discuss some of the obstacles that health care professionals face. The main point is that although it may be difficult to be an autistic health care professional, we (as a society) need more of them.&lt;b&gt;What personal or professional perspectives do the authors bring to this topic?:&lt;/b&gt; The author is a clinical psychologist working in private practice and in an academic medical center. The majority of her time is focused on autism assessment and consultation, and she spends long periods of time listening to the stories of autistic professionals as they explore their identities and collaborate to find recommendations that will make their work experiences go more smoothly. She also consults with health care providers on better serving autistic clients in different health care settings. The author is also influenced by autistic colleagues and mentors with whom she regularly consults and collaborates. The author combines the knowledge gained from listening to clients' stories, working with autistic people, learning from autistic people, and reading formal research on autistic experiences.&lt;b&gt;What is already known about this topic?:&lt;/b&gt; There are some individual accounts of autistic people thriving as well as experiencing difficulties in health care, and there is some","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"8 1","pages":"5-13"},"PeriodicalIF":0.0,"publicationDate":"2024-06-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13294715/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148347583","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 Trait Level and Reaction Time in Older Adults: The Influence of Sex and Task upon Study Outcome.","authors":"Jade Eloise Norris, Andrea Tales, Julia R Badger, Alecia L Cousins, Emma Richards","doi":"10.1089/aut.2023.0120","DOIUrl":"10.1089/aut.2023.0120","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;The present debate regarding what constitutes \"cognitively healthy aging\" in people with elevated autistic traits is highly relevant to the diagnosis of age-related conditions such as mild cognitive impairment (MCI) and dementia. Behavioral reaction time (RT) is an important component of cognition and everyday functioning, and it is included in diagnostic testing for such conditions. Autism trait level is not typically considered when including participants in aging-related RT research, and therefore requires examination to address whether those with high levels of autistic traits may show differences in terms of their RT performance, as relevant to testing for MCI and dementia.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;In the present study, we examined the relationship between RT and levels of autistic traits in 76 community-dwelling older adults (aged 50-78 years). We also investigated whether there were any differences in the relationship between RT and autistic trait level with respect to sex.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;We found that the relationship between an individual's levels of autistic traits and their RT scores varied depending on the type of task used, and on sex. In particular, for females, higher levels of autistic traits were related to slower RTs on the Trail Making task (Trails A), a task commonly used in clinical practice.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusion: &lt;/strong&gt;Our findings indicate that some aspects of age-related cognitive decline may be steeper for older adults with higher levels of autistic traits, but that the impact may be different depending on sex, with higher trait levels in females being indicative of poorer RT performance. These findings may explain some of the outcome variability typical of previous studies, and have important implications for interpreting tests used for dementia diagnosis, particularly for older adults on the autism spectrum.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Community brief: &lt;/strong&gt;&lt;b&gt;Why is this an important issue?:&lt;/b&gt; Reaction time (RT) refers to the amount of time that passes between when we perceive something and when we respond to it. It is an important part of our thinking and reasoning abilities called cognition, affecting how we function in daily life, and is included in the tests used for diagnosing age-related conditions including mild cognitive impairment (MCI) and dementia. It is important to understand more about the relationship between autistic traits and RT, particularly as we age.&lt;b&gt;What was the purpose of this study?:&lt;/b&gt; A person's level of autistic traits are not typically taken into account when reaction time data is collected from the general population. This data is then used to compare an individual's performance with when diagnosing conditions such as MCI and dementia. This means that, for older adults on the autism spectrum, current practice based on such data may be leading to inaccurate interpretation of cognitive ability.&lt;b&gt;What did the researchers do?:&lt;/b&gt; The c","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"8 2","pages":"246-259"},"PeriodicalIF":0.0,"publicationDate":"2024-05-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13294716/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148347416","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":"<i>Call for Papers:</i> Autism and Aging: A Lifespan Approach: Deadline for Manuscript Submission: January 15, 2024.","authors":"Mary Stewart, Anna Day, Hanna Bertilsdotter Rosqvist","doi":"10.1089/aut.2023.29025.cfp","DOIUrl":"https://doi.org/10.1089/aut.2023.29025.cfp","url":null,"abstract":"","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"5 4","pages":"345-346"},"PeriodicalIF":0.0,"publicationDate":"2023-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10727145/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138802697","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":"<i>Correction to:</i> Centering the Inner Experience of Autism: Development of the Self-Assessment of Autistic Traits, by Ratto et al. <i>Autism Adulthood</i> 2023;5(1):93-105; doi: 10.1089/aut.2021.0099.","authors":"","doi":"10.1089/aut.2021.0099.correx","DOIUrl":"https://doi.org/10.1089/aut.2021.0099.correx","url":null,"abstract":"<p><p>[This corrects the article DOI: 10.1089/aut.2021.0099.].</p>","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"5 3","pages":"344"},"PeriodicalIF":0.0,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10468544/pdf/aut.2021.0099.correx.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10147391","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":"\"Simultaneously Vague and Oddly Specific\": Understanding Autistic People's Experiences of Decision Making and Research Questionnaires.","authors":"Rachael Stacey, Eilidh Cage","doi":"10.1089/aut.2022.0039","DOIUrl":"10.1089/aut.2022.0039","url":null,"abstract":"<p><strong>Background: </strong>Autism researchers often use questionnaires to gather the views and experiences of autistic people. However, questionnaires may not always be designed in accessible ways. In addition, answering questions within a questionnaire involves decision making, which some autistic people have reported finding difficult. Therefore, this exploratory study aimed to enhance our understanding of autistic people's experiences of decision making, and to analyze their feedback on questionnaire measures to further understand decision making within the research context.</p><p><strong>Methods: </strong>One hundred seventeen participants completed an online questionnaire. In the questionnaire, they answered an open question about what affected their ability to make decisions. They then completed four questionnaire measures and after each one provided feedback. We used content analysis to categorize participants' qualitative answers.</p><p><strong>Results: </strong>Participants discussed how their internal state, other people, the quality and quantity of information, pressure on choosing a response, external distractions, and lack of time all affected their decision making. Feedback on the questionnaires highlighted how questions needed context, often questions themselves were unclear and difficult to understand, that there were issues with Likert scales, and how measures could have questionable validity for autistic people.</p><p><strong>Conclusions: </strong>Autism researchers need to consider how they can make their research as accessible as possible for autistic people. Our study highlights how decision making is not a straight-forward process, and researchers have a role in ensuring they give their participants clear and contextualized information. Involving autistic people in the design of research is a potential way of improving the quality of research.</p>","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"5 3","pages":"263-274"},"PeriodicalIF":0.0,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10468547/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10151874","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":"Early-Career Autism Researchers Are Shifting Their Research Directions: Tragedy or Opportunity?","authors":"Diana Weiting Tan","doi":"10.1089/aut.2023.0021","DOIUrl":"10.1089/aut.2023.0021","url":null,"abstract":"<p><p>Early-career researchers (ECRs) are among the most creative, talented, and energetic researchers, and they play an important role in knowledge production and pushing scientific boundaries. Recent debates have implied that many early-career autism researchers are compelled to shift their areas of focus within autism research as a consequence of their work being scrutinized by the autistic and autism communities. In this Perspective, I draw on my own experience as an early-career autism researcher having recently pivoted my research focus to become more aligned with community priorities. I reflect on whether these putative shifts in research direction are, indeed, a tragedy, as has previously been suggested, or, in fact, an opportunity for autism researchers. I argue that pivoting in research is a demonstration of science adapting to the ever-evolving needs in society and changes in our understanding of neurodiversity, neurodivergence, and research methods. While disagreements between the autistic, autism, and research communities may well feel uncomfortable, these tensions also present an opportunity for us-as non-autistic autism researchers-to reflect and to act toward building trust with the community. I recommend three areas for reflections: the purpose of our research, our position of power, and the epistemic limits of our academic expertise. I end by encouraging ECRs to consider taking actions, however small, to lead the charge in improving practices in autism research.</p>","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"5 3","pages":"218-224"},"PeriodicalIF":0.0,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10468548/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10143372","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":"Lockdown Experiences and Views on Future Research Participation of Autistic Adults in the UK During the First 6 Months of the COVID-19 Pandemic.","authors":"Alba X Realpe, Nicola Mills, Lucy Beasant, Sarah Douglas, Lorcan Kenny, Dheeraj Rai","doi":"10.1089/aut.2022.0027","DOIUrl":"10.1089/aut.2022.0027","url":null,"abstract":"<p><strong>Background: </strong>The COVID-19 pandemic resulted in large-scale public health restrictions and lockdowns across many countries. There is an increasing literature on the varied impact of such lockdowns in autistic adults. However, there is very little research on how the pandemic and related public health measures may impact the willingness of autistic people in engaging and taking part in research. The aim of this qualitative study was to explore autistic adults' experiences of the COVID-19 lockdown and how the pandemic may affect future research participation.</p><p><strong>Methods: </strong>We conducted in-depth interviews with 31 autistic adults between March and July 2020. Transcripts were analyzed thematically within a critical realism framework.</p><p><strong>Results: </strong>Participants identified positive aspects of lockdown such as enjoying the lack of social pressures and using their well-developed skills for dealing with uncertainty. Autistic people also shared challenges of adjusting to lockdown, for example, rapid change in daily routines. While hopeful about the freedom gained from easing restrictions, participants were concerned about the inconsistent communication and application of rules during the transition out of lockdown. This may have exacerbated already rising mental health issues among autistic people. The participants viewed research participation and engagement with increased relevance during the pandemic and welcomed efforts to conduct research using online methods of communication.</p><p><strong>Conclusion: </strong>The COVID-19 lockdown had a varied effect in the lives and routines of autistic people. However, health care providers and researchers need to be mindful of rising mental health issues in the aftermath of the pandemic, especially for people who were already vulnerable. The response to the pandemic may have offered opportunities for innovation in research processes enabling more autistic people to engage with research and making studies more inclusive.</p>","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"5 3","pages":"301-310"},"PeriodicalIF":0.0,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10468553/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10151873","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":"<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}