Autism in adulthood : challenges and management最新文献

{"title":"Menstruation and Autism: a qualitative systematic review.","authors":"Rebecca Ellis, Gemma Williams, Selena Caemawr, Monique Craine, Willow Holloway, Kathryn Williams, Sebastian C K Shaw, Aimee Grant","doi":"10.1089/aut.2024.0307","DOIUrl":"10.1089/aut.2024.0307","url":null,"abstract":"<p><strong>Background: </strong>Menstruation is a biological process which can be irregular, painful, and co-occur with fatigue, social withdrawal, and increased emotions. There is some evidence to suggest Autistic people experience menstruation differently to non-Autistic people.</p><p><strong>Methods: </strong>This systematic review (PROSPERO registration: CRD42023399674) searched four databases in February 2023. We used thematic synthesis to analyse qualitative studies of experiences related to menstruation for Autistic people and people providing support to Autistic people. We also appraised the quality of studies with CASP.</p><p><strong>Results: </strong>Our thematic synthesis of twelve (eight peer-reviewed; four grey literature) sources identified differing priorities between parents, professionals, and Autistic people. Autistic people reported physical, emotional and social impacts of menstruation. Furthermore, there were reports of increased Autism-specific experiences during menstruation such as increased sensory sensitivities, burnout and anxiety, which were often unseen by those who supported them. Autistic people's menstruation priorities were obtaining knowledge and skills ahead of their first period. However, parents and professionals focused on external behaviours including hygiene and obtaining independence in managing periods. Sources poorly described participant demographics and had a limited focus on Autistic perspectives.</p><p><strong>Conclusions: </strong>We conclude there needs to be tailored support to meet the needs of both Autistic individuals and those who support them. This should be informed by research which centers Autistic people.</p>","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":" ","pages":"862-876"},"PeriodicalIF":0.0,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7617708/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144176065","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":"Pilot Test of the Forming Love around Autistic people to Prevent Suicide Program.","authors":"Anne V Kirby, Zack Siddeek, Bobbi Duncan-Ishcomer, Rachel Kripke-Ludwig, Andee Joyce, Kayla Rodriguez, Whitney Lee, Kavitha Murthi, Kristina Feldman, Alissa Atisme, Amber Darlington, Lisa Wexler, Christina Nicolaidis","doi":"10.1177/25739581261486816","DOIUrl":"10.1177/25739581261486816","url":null,"abstract":"<p><p>Notable proportions of autistic people experience suicidal thinking and actions (i.e., suicidality). Many of the identified influences on suicidality for autistic people necessitate broad changes in societal attitudes, services, and supports. Yet most suicide-prevention efforts focus on clinical interventions targeting change for autistic individuals themselves. We used a community-based participatory research approach to develop a novel program for autism-focused (or autism-relevant) community organizations. The program is called Forming Love around Autistic people to Prevent Suicide (FLAPS). FLAPS is a four-part virtual education and capacity-building intervention focused on supporting organizations to incorporate broad autism suicide prevention efforts into their ongoing work. We pilot tested this new program in a single-arm trial. A team of autistic and nonautistic co-facilitators delivered the full FLAPS program three times to grouped organizations. Fifty-one participants, from a total of 11 organizations, enrolled in the program. Our primary outcome measure was the tailored Steps Toward Prevention - Autism Community Suicide Prevention questionnaire, administered at pre-program, post-program, and three-month follow-up. We observed significant increases, with moderate to high effect sizes, in knowledge & capacity and actions. The majority of participants who provided feedback (74%) agreed that FLAPS encouraged them to think in new ways, that it was worth their time, and that their organization can use the information. At the three-month follow-up, over 75% of respondents reported that they sometimes or frequently used concepts from the program. Future work is needed to further evaluate program outcomes, including determining any measurable impact on autistic individuals served within participating organizations.</p><p><strong>Trial registration: </strong>ClinicalTrials.gov https://clinicaltrials.gov/study/NCT06552871.</p>","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2026-09-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13592986/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149018751","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":"Understanding the Impact of Living Situation and Social Satisfaction on Depression and Substance Use in Autistic Young Adults Without Intellectual Disability.","authors":"María E Contreras-Pérez, Xiangyu Tao, Olivia Vezina, Anthony Spirito, Stephen J Sheinkopf, Casey A Cragin, Kristina M Jackson","doi":"10.1177/25739581261474766","DOIUrl":"10.1177/25739581261474766","url":null,"abstract":"<p><strong>Background: </strong>Autistic young adults face elevated risks for depression, and emerging evidence indicates that some engage in substance use. Residential status and social satisfaction may be related to these outcomes, yet little research has examined their interplay in autistic populations.</p><p><strong>Methods: </strong>Baseline data were drawn from 267 autistic young adults ages 18-24 (M=21.56; SD=1.76). Participants were predominantly female (65.63%), non-Hispanic White (75%), and enrolled in school (68.76%). Participants reported their current residential status, mental health, and substance use, and completed measures of social and role functioning, social satisfaction, and demographic characteristics. A unified mediation model tested whether social satisfaction mediated associations between residential status and (1) depression, (2) alcohol use, and (3) cannabis use, adjusting for relevant covariates.</p><p><strong>Results: </strong>Living alone, compared to living with a parental figure, was associated with greater social satisfaction, which in turn predicted fewer depression symptoms. In contrast, living alone or with friends or roommates was directly associated with elevated alcohol and cannabis use but showed no indirect effects through social satisfaction. Social satisfaction predicted lower depression but was not significantly related to alcohol or cannabis use.</p><p><strong>Conclusion: </strong>Residential status and social satisfaction jointly shape emotional and behavioral outcomes among autistic young adults. Independent living may enhance well-being when accompanied by fulfilling social connections, whereas peer cohabitation may increase exposure to substance use. Interventions that support autonomy, foster social engagement, and incorporate harm reduction strategies may be particularly valuable in promoting healthy transitions to adulthood for autistic individuals.</p>","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2026-08-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13505494/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148820394","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":"Valid when valued: A community-engaged framework and toolkit to improve identification of autistic people's motor difficulties in research and practice.","authors":"Haylie L Miller, Priscila M Tamplain, Miri Tal-Saban, Stefania Zoia, Anna L Barnett, Sheila E Henderson","doi":"10.1177/25739581261474754","DOIUrl":"10.1177/25739581261474754","url":null,"abstract":"<p><p>Many autistic people experience clinically-significant motor differences that pose lifelong physical health risks including physical inactivity, cardiometabolic disease, falls and injuries, and chronic pain. These differences amplify existing cognitive and social-emotional features of autism and limit daily living skills, which in turn negatively impacts mental health and participation. Yet, professionals often overlook or mischaracterize autistic people's motor difficulties, in part because non-motor factors can affect assessment outcomes. Most standardized motor assessments presume typical communication, sensory processing, regulation, and tolerance of unfamiliar testing environments, leading to construct-irrelevant variance and potential misinterpretation of results. This risk increases when examiners lack autism-specific experience or use rigid administration practices without appropriate adaptation. Adopting a neurodiversity-affirming framework improves validity, equity, and uptake of motor assessment across research, education, and clinical contexts. Here, we present an Adapted Motor Assessment Toolkit for Autism with implementation examples grounded in the Movement Assessment Battery for Children-Third Edition. An interdisciplinary team of clinicians and researchers developed and refined the toolkit in partnership with autistic people and parents of autistic children. The toolkit enables preservation of core task demands and scoring while adapting assessment practices to support accessibility and improve validity of results. Adaptations span five domains: pre-assessment preparation, sensory supports, procedural adaptations, communication supports, and motivation/engagement. The toolkit helps examiners to identify support needs, implementing adaptations, interpreting results, and determining whether normative comparisons remain appropriate. Neurodiversity-affirming assessment practices enable earlier identification of motor differences, inclusion of more diverse participants in research, and tailored intervention and prevention planning to advance physical health equity across the lifespan.</p>","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2026-08-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13458965/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148714770","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 Experience and Aging: A Neurodiversity-Affirmative Approach.","authors":"Mary E Stewart, Anna Day, Hanna Bertilsdotter Rosqvist","doi":"10.1177/25739581261440760","DOIUrl":"https://doi.org/10.1177/25739581261440760","url":null,"abstract":"","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"8 2","pages":"145-148"},"PeriodicalIF":0.0,"publicationDate":"2026-04-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13294710/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148347488","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":"Priorities for Research on Autism and Ageing: A Roundtable Discussion.","authors":"Mary E Stewart, Hanna Bertilsdotter Rosqvist, Anna Day, Joseph Long, Aimee Grant, Marion Hersh, Cos Michael, Mary Doherty, Cecilia Ingard, Wenn Lawson","doi":"10.1177/25739581261440762","DOIUrl":"https://doi.org/10.1177/25739581261440762","url":null,"abstract":"","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"8 2","pages":"149-158"},"PeriodicalIF":0.0,"publicationDate":"2026-04-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13197623/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148018591","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":"Defining Nonsuicidal Self-Injury in Autistic People: A Framework for Assessment Using Key Elements to Aid in Characterization.","authors":"Ligia Antezana, Caitlin M Conner, Jacob Feldman, Lillian L Manna, Amy Ionadi, Derica J Su, Safaa Eldeeb, Holly Gastgeb, Shalini Sivathasan, Jessie B Northrup, Kelly B Beck, Lori N Scott, Carla A Mazefsky","doi":"10.1177/25739581261423792","DOIUrl":"10.1177/25739581261423792","url":null,"abstract":"<p><p>Nonsuicidal self-injury (NSSI) is the intentional destruction of one's own body tissue without suicidal intent and for purposes that are not socially or culturally accepted or practiced (e.g., intentional self-cutting, self-biting). Research on NSSI in autistic people is limited but increasing. NSSI is strongly associated with suicide, and it is an important behavior to better understand given the high rates of NSSI and suicide in autistic people. To date, research focused on autistic people has mostly used self-report questionnaires to assess NSSI, with a more limited application of clinical interviews of NSSI. However, researchers and clinicians may find it challenging to determine whether a behavior is categorized as NSSI in autistic people, especially since autistic people may present with other behaviors that cause self-injury. We set forth key elements in defining NSSI to support better reliability of NSSI assessment across studies. We emphasize that when assessing for NSSI the behavior must meet these key elements: (1) not intended to cause death, (2) the self-injury/harm is intentional, (3) there is immediate physical injury following the behavior, (4) the injury is to the external body, not internal body, (5) the injury is self-imposed and not done by another being, and (6) it is not a part of social or cultural practices. It will be important for future work to develop measures that can accurately assess NSSI in autistic people and advance mechanistic and intervention research related to NSSI.</p>","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2026-03-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12959480/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147367341","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":"Formative evaluation of PREPARE for Autistic Adults: An adult autism training for resident physicians designed with autistic adults and family members.","authors":"Brittany N Hand, Daniel Gilmore, J Madison Hyer, Holden DeVassie, Deondray Radford, Lisa Juckett, Christopher Hanks, Susan M Havercamp, Daniel Coury","doi":"10.1177/25739581251376162","DOIUrl":"10.1177/25739581251376162","url":null,"abstract":"<p><p>Efforts are intensifying across the U.S. to better prepare physicians to deliver high-quality, patient-centered care for adults with disabilities like autism. To address this need, we partnered with autistic adults and their families to develop a training program for resident physicians called Promoting Residents' Excellence in Patient-centered cARE (PREPARE) for Autistic Adults. Here, we describe an evaluation of the feasibility, acceptability, and appropriateness of PREPARE for Autistic Adults to inform content and format revisions before efficacy pilot testing. We recruited residents (n=14) at one large academic medical center in the Midwestern U.S. to participate in the eight-week virtual training, which included six pre-recorded lectures, six facilitator-led case studies, and two standardized patient encounters. Participants rated feasibility, acceptability and appropriateness of the training, and participated in qualitative interviews to identify improvement opportunities. We analyzed quantitative data with descriptive statistics and qualitative interviews with an inductive rapid qualitative analysis. Participants' median completion rate was 76.9% of training components. Participants rated feasibility, acceptability, and appropriateness highly. We identified four main qualitative themes: 1) Flexibility facilitates feasibility, 2) High-value experiences increase acceptability, 3) Practicalities affecting participation, and 4) High clinical practice relevance enhances appropriateness. We revised the training based on feedback, including clarifying or adding content, modifying standardized patient encounter logistics, and adding optional components for residency programs to supplement core PREPARE content. These results provide information for continued refinement of the training. Our next steps include pilot testing the efficacy of the revised training at one large academic medical center.</p>","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2025-12-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12948151/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147328411","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":"Language Matters in British Newspapers: A Participatory Analysis of the Autism UK Press Corpus.","authors":"Themis Karaminis, Monique Botha, Sophie Longley, Krysia Emily Waldock, Soph Storey, Khiah Strachan, Nick Ransom, Elizabeth Pellicano","doi":"10.1089/aut.2023.0105","DOIUrl":"https://doi.org/10.1089/aut.2023.0105","url":null,"abstract":"<p><strong>Background: </strong>Language around autism plays a crucial role in shaping public attitudes toward autistic people. The use of identity-first versus person-first language and impersonal references to autism can affect how autistic people are perceived. These factors should impact the representation of autistic people in newspapers, where negative and stereotypical representations are often perpetuated.</p><p><strong>Method: </strong>We asked five autistic people to judge the sentiment toward autism and autistic people in 1000 quotes from British newspapers (2011-2020). The coders, who did not know the newspaper title and time of publication, made their judgments based on two dimensions, warmth and competence, from the Stereotype Content Model (SCM). We examined the overall judgments of warmth and competence and considered variations in language context and terminology, such as the use of impersonal references to autism or identity-first and person-first language. We also examined potential differences between broadsheets and tabloids, left- and right-leaning newspapers, and changes over time.</p><p><strong>Results: </strong>The majority of quotes from British newspapers fell under a low warmth and low competence area within SCM. Furthermore, impersonal references to autism tended to be rated lower in warmth and competence than references linking autism to an individual, whereas identity-first language was judged higher in warmth and competence than person-first language. Quotes from broadsheets were assigned similar warmth and slightly higher competence than quotes from tabloids. However, left-leaning and right-leaning papers did not differ regarding warmth and competence, and there were inconsistent changes over time.</p><p><strong>Conclusion: </strong>Our study confirms that the portrayal of autistic people in British newspapers tends to be negative. According to autistic raters, associating autism with a person and using identity-first language are linked to more positive representations. Although we found subtle variations in sentiment related to reporting style, our study shows little progress over time toward more positive portrayals.</p>","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"7 6","pages":"698-711"},"PeriodicalIF":0.0,"publicationDate":"2025-11-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12851867/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146108716","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":"Contextual Factors Contributing to Social Participation for LGBTQIA+ Autistic Adults in the United States.","authors":"Elizabeth K Schmidt, Farah Rexha, Mason Williams, Jess Bauza de Garcia, Maya Sicherer, Rachel Hickman","doi":"10.1089/aut.2023.0149","DOIUrl":"https://doi.org/10.1089/aut.2023.0149","url":null,"abstract":"<p><strong>Background: </strong>Separately, autistic and LGBTQIA+ people report experiencing negative social participation outcomes. Specifically, autistic individuals report fewer friendships but a desire for them. LGBTQIA+ individuals report experiences of family rejection, microaggressions from friends, and discrimination. Based on intersectionality theory, we hypothesize that individuals who are both autistic and LGBTQIA+ may have additional challenges with social participation and require unique support. Therefore, in this study, we aim to describe the experiences of social participation and the supports and barriers for autistic LGBTQIA+ adults.</p><p><strong>Methods: </strong>This analysis utilized data from a mixed-method, participatory research study, including qualitative data from 57 LGBTQIA+ autistic adults and quantitative survey data from 107 LGBTQIA+ autistic adults. Qualitative data were collected through virtual semi-structured interviews or focus groups and analyzed using interpretative phenomenological analysis. Analysts used an audit trail and negative case analysis and checked for representativeness of the data across participants to ensure trustworthiness of data. A survey was developed using the findings from the qualitative data and built in Qualtrics for dissemination. Survey data were analyzed using descriptive statistics and merged with qualitative data.</p><p><strong>Results: </strong>Participants discussed relationships with family, friends, and intimate partners-however, primarily focused on friendships. Participants described how they \"found their people\" serendipitously, through shared interests or hobbies, or intentionally online. A subset of participants reported challenges \"finding their people,\" with specific barriers being challenges online and inaccessibility within LGBTQIA+ spaces and events. Participants reported strategies to safely move relationships from online to in-person, such as identifying safe, accessible social activities of shared interest with their friend or intimate partner(s).</p><p><strong>Conclusions: </strong>Autistic LGBTQIA+ adults validate the importance in \"finding their people,\" yet not all autistic LGBTQIA+ adults have successfully developed these relationships. Identified supports and barriers indicate a need for more support to help LGBTQIA+ autistic individuals connect in person, including moving online relationships safely to in-person activities. In addition, these results suggest the need for increasing accessibility of LGBTQIA+ events, such as additional structured activities within the LGBTQIA+ communities and sensory-friendly Pride event options.</p>","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"7 6","pages":"712-723"},"PeriodicalIF":0.0,"publicationDate":"2025-11-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12856568/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146108685","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}