Autism in adulthood : challenges and management最新文献

{"title":"Employment and Career Development Among Autistic Adults: Self and Caregiver Perceptions.","authors":"Xinru Jiang, Shana R Cohen, Sasha M Zeedyk, Haley Brown","doi":"10.1089/aut.2024.0216","DOIUrl":"10.1089/aut.2024.0216","url":null,"abstract":"<p><strong>Background: </strong>The number of autistic individuals seeking employment has been rising, but many autistic individuals struggle to achieve optimal employment outcomes. Workplace barriers (e.g., insufficient on-the-job training) have impacted the ability of autistic adults to obtain and maintain employment. Drawing from neurodiversity-affirming practices to highlight the unique strengths that each autistic adult can bring to the workplace, we examined autistic interns and their caregivers' perspectives regarding employment and career development.</p><p><strong>Methods: </strong>Within the context of the 2021 science, technology, engineering, and mathematics-related summer internship, researchers conducted individual interviews lasting approximately 45-60 minutes with 14 autistic interns and 17 caregivers. Researchers audio-recorded and transcribed each interview verbatim and then used a theme-based coding approach and achieved interrater agreement, with pooled Cohen's kappa values ranging from 0.86 to 1.00.</p><p><strong>Results: </strong>Our findings indicated that autistic interns generally felt they experienced difficulty securing full-time, long-term paid positions. Despite previous jobs often not aligning with their interests, interns expressed strong motivation to obtain positions driven by their passions and goals. Although interns faced job access challenges due to a lack of relevant educational background or work experience, their strengths, such as persistence in performing job duties, could support them in obtaining and maintaining employment. Caregivers also expressed concerns about interns finding suitable employment. They felt that previous jobs did not align with the interns' skills and believed that recognizing the interns' potential and capabilities could help them thrive.</p><p><strong>Conclusions: </strong>Our findings suggested that employers should acknowledge the strengths of each autistic individual, as they can bring value to the workplace. Highlighting the unique characteristics of autistic individuals and creating more inclusive workplaces can help autistic individuals fulfill their potential. Researchers discuss implications for potential employers and the neurodivergent community.</p><p><strong>Community brief: </strong><b>Why is this an important issue?:</b> Autistic individuals possess a sense of self-worth, along with strengths and skills that can add value to the workplace and should be recognized by employers. However, employers and workplaces have not provided optimal employment opportunities for this population. By listening to autistic interns' perspectives on obtaining and maintaining employment, we sought to better understand these issues, aiming to inform ways to improve employment outcomes for autistic individuals.<b>What was the purpose of this study?:</b> We aimed to understand the experiences of autistic interns related to obtaining and maintaining jobs. Specifically, we wanted to know what ","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"8 4","pages":"755-767"},"PeriodicalIF":0.0,"publicationDate":"2025-01-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13315288/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148364167","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":"\"For Fear that They Would Turn Away from me\": From Transgressing Boundaries to Sexual Abuse in Spanish Autistic Women and Non-Binary People.","authors":"Anna Ballester-Galí, Irene Garcia-Molina","doi":"10.1089/aut.2024.0226","DOIUrl":"10.1089/aut.2024.0226","url":null,"abstract":"<p><strong>Background: </strong>Autistic women and non-binary people experience higher rates of abuse, including sexual abuse, with different negative repercussions for their mental health. This study aimed to analyze the risk factors that lead autistic women and non-binary people to become victims of sexual abuse.</p><p><strong>Methods: </strong>We conducted semi-structured interviews with seven women and two non-binary people, all of them Spanish and with a late diagnosis of autism. We analyzed the data using reflexive thematic analysis.</p><p><strong>Results: </strong>We generated four main themes as follows: (1) crossing their own boundaries to belong to a group, (2) maintaining the relationship at all costs, (3) abuse by their relationships, and (4) relationships today. We highlight a gradient of severity of the abusive behavior that includes the transgression of boundaries in the first phases of the relationship to fit in with the group, which results in the normalization of abusive behaviors and a lack of identification of these. This escalation of violence by their partners leads them, in most cases, to experience sexual abuse, which they become aware of sometime later.</p><p><strong>Conclusion: </strong>We must address abuse as a social issue and a process of awareness in the population so that autistic people are not pressured to alter their authentic selves to gain acceptance within society.</p><p><strong>Community brief: </strong><b>Why was this study conducted?:</b> We conducted this study because when we talked with autistic women and gender dissidents, they told us many stories about how they did not know how to set boundaries, which often led others to manipulate or even abuse them. Currently, little is known about this subject, and even less so in Spanish culture.<b>What was the purpose of this study?:</b> This study aimed to explore the experiences of autistic women and gender dissidents regarding the transgression of boundaries and abuse by their \"friends\" and partners.<b>What did the researchers do?:</b> We used a semi-structured interview that autistic professionals, researchers, and collaborators created, ensuring that it respects the autistic community. Nine participants told us about their experiences, which we transcribed and analyzed. We observed and searched for patterns in all the data to identify common themes across the participants.<b>What were the results of this study?:</b> We generated four major patterns (themes) that ranged from the least severe experiences (the transgression of boundaries) to the most severe (abuse). Concerning boundary transgressions, we found that some participants reported acting in a certain way to please others or avoid conflicts, for example, always doing what they were told, even though it did not seem right to them. Concerning abuse, we found very distressing stories of manipulation and sexual abuse.<b>What do these findings add to what was already known?:</b> As far as the authors kno","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"8 4","pages":"768-775"},"PeriodicalIF":0.0,"publicationDate":"2025-01-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13315284/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148364033","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":"Taking Off the Mask: Investigating Autism Diagnosis and Camouflaging in Adult Women.","authors":"Sandy Gonçalves Garcia, Cinthia da Silveira Simões-Pires, Juliana Acosta Brum, J Centurion Cabral","doi":"10.1089/aut.2024.0150","DOIUrl":"10.1089/aut.2024.0150","url":null,"abstract":"<p><strong>Background: </strong>Awareness and recognition of autism have grown significantly in recent years. Despite this progress, research on the diagnosis and camouflaging behaviors in adult autistic women remains limited. This study seeks to address this gap by examining the characteristics of autism in adult women, with a particular focus on understanding the role of camouflaging in the challenges these women face in obtaining a formal diagnosis.</p><p><strong>Methods: </strong>Through a cross-sectional study involving 253 autistic participants, we administered a comprehensive battery of psychological assessment instruments to collect data on autistic traits, camouflage behaviors, stress, anxiety, depression, and diagnosis/suspicion-related factors.</p><p><strong>Results: </strong>Our findings revealed that the traits and characteristics of autism did not significantly differ between women and men or non-binary individuals. However, there were significant delays in the formal identification of autism in women, who had a lower rate of early autism diagnosis compared with other genders. In contrast, women often received prior diagnoses of other psychological conditions before their autism was identified. While camouflage behaviors were significantly more common among women than men, these patterns did not directly explain the delay in suspicion and diagnosis in this population. Although camouflaging predicted higher levels of anxiety, stress, and depression, especially in women, there were no consistent associations between masking measures and early autism identification.</p><p><strong>Conclusions: </strong>These findings suggest that while camouflaging behavior may exacerbate psychological distress and make autism more invisible for women, it is not the primary factor contributing to the delayed identification. Instead, gender stereotypes and the inadequacy of clinical assessment tools tailored to more typically feminine presentations of autism are likely major obstacles in the diagnostic process.</p><p><strong>Community brief: </strong><b>Why is this an important issue?:</b> Autistic traits are pivotal aspects of individuals' identities, yet they are frequently misunderstood, especially in girls and women. Recognizing and diagnosing autism in women are crucial for providing self-awareness and appropriate support, when necessary, and improving their quality of life.<b>What was the purpose of this study?:</b> This study aimed to understand the characteristics of autism in adult Brazilian women, including how they might mask their traits and the challenges they face in obtaining a formal identification.<b>What did we do?:</b> We conducted a survey involving 253 autistic adults and used several psychological assessment tools to collect data on stress, anxiety, depression, camouflage behaviors, autism-related characteristics, and the processes of suspicion and diagnosis. By comparing data from women with those of men and non-binary individuals,","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"8 4","pages":"677-686"},"PeriodicalIF":0.0,"publicationDate":"2025-01-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13315287/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148364254","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":"\"Only Boys Can be Autistic\": A Qualitative Exploration of Gender Stereotype and Socialization on the Diagnostic Journey.","authors":"Ingrid Tien, Arabella Pearson, Sila Sozeri, Kate Seers","doi":"10.1089/aut.2024.0178","DOIUrl":"10.1089/aut.2024.0178","url":null,"abstract":"<p><strong>Background: </strong>Prior research exploring phenotypic gender differences in autism suggests that females are less likely to meet the <i>Diagnostic and Statistical Manual of Mental Disorders</i>, Fifth Edition, criteria and receive a diagnosis. Recent findings also propose camouflaging and gendered expectations impact diagnostic rates for those who were not socialized as males, suggesting a male-oriented stereotype and bias within the diagnostic system. As such, this article explores how the male stereotype of autism impacts the diagnostic trajectory of autistic adults.</p><p><strong>Methods: </strong>In total, 24 autistic individuals, consisting of 14 genderqueer, 8 female, and 2 male participants, shared their experiences with the diagnostic system through interviews. The research team conducted a reflexive thematic analysis using theories of gender socialization and feminist disability models.</p><p><strong>Results: </strong>Themes revealed that the male gender is inexplicitly tied to diagnostic representation of autistic individuals, failing to encompass the difficulties experiences of those socialized as females. Clinicians and family members often gave a differential interpretation of symptoms for those who did not identify as male, leading to late or missing diagnoses. Lastly, participants discussed how their socialization as a female directly led to the suppression of their autistic traits.</p><p><strong>Conclusion: </strong>These findings shed light on the pervasive impact of gender stereotypes on diagnosis and recognition of autism.</p><p><strong>Community brief: </strong><b>What was the purpose of this study?:</b> Research shows that girls and women are often less likely to be diagnosed with autism because their challenges can look different from those typically seen in boys. On top of that, some people may mask their difficulties to fit in, which makes spotting the signs even harder. Since many diagnostic tools and clinicians' understanding of autism are based on the idea that it mostly affects boys, this article looks at how that stereotype creates barriers for non-male individuals to get an accurate diagnosis.<b>What did the researchers do?:</b> We interviewed 24 autistic adults. Of these, 14 identified as genderqueer, 8 as female, and 2 as male. We used reflexive thematic analysis, a method that considers both the researchers' identities (being autistic, etc.) and explains common themes by relating them to other research in the field about disability and gender.<b>What were the results of the study?:</b> Our first theme showed that autism is often seen only as a \"male\" condition, which has led clinicians and family members to overlook the participants' autism. In another theme, participants shared that the traits that are seen as autistic in males-like their male cousins or siblings-weren't seen as autism in them. Overall, participants felt that their gender and the expectations that were associated with their gender i","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"8 4","pages":"698-709"},"PeriodicalIF":0.0,"publicationDate":"2025-01-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13315290/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148364177","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 \"Dual Masking Phenomenon\": A Critical Autoethnography of an Autistic Multiracial Latina Amid the Presence of White Autistic Researchers and Self-Advocates.","authors":"Mayne Souza Benedetto","doi":"10.1089/aut.2024.0105","DOIUrl":"10.1089/aut.2024.0105","url":null,"abstract":"<p><strong>Background: </strong>Autistic camouflage describes how autistic individuals assimilate allistic behavior for societal acceptance, while White mimicry demonstrates how non-White individuals assimilate White identities. These coping strategies, although different, are significant for non-White autistic individuals. Understanding them is crucial for mitigating racial and ethnic biases in autism research and clinical practice, emphasizing the importance of addressing ethnic and racial identity assimilation.</p><p><strong>Methods: </strong>I used a critical autoethnography aimed at advancing the decolonization of research and fostering equitable knowledge production. This approach entwined personal narratives with theoretical frameworks, transcending mere depiction. Validation of findings through peer debriefing was instrumental, while my positioning as a multiracial Latina expounded the intricate dimensions of racial identity and bias within the study's context.</p><p><strong>Results: </strong>The findings revealed the \"dual masking phenomenon\" in non-White autistic individuals, encompassing both White mimicry and autistic camouflage. These complexities reveal challenges within racially influenced societal contexts, advocating for tailored support for non-White autistic individuals. Narratives unveiled prevalent tokenism, microaggressions, privilege, epistemicide, and meritocracy within predominantly White autistic environments, uncovering systemic barriers and the pressure to assimilate Whiteness to access opportunities. The study underscores the imperative to question neutrality and rectify disparities within the non-White autistic community.</p><p><strong>Discussion: </strong>The inadequacy of relying solely on autistic camouflage among non-White autistic individuals within racially influenced societal settings is highlighted. Instead, adopting traits associated with Whiteness seems to offer a more effective approach. The \"dual masking phenomenon\" reveals this systemic challenge-the pressure for assimilation faced by non-White autistic individuals, worsened by the prevailing systemic racism in predominantly White environments, as illustrated in the results. Recommendations include incorporating racial factors into research by racializing the experiences of White autistic individuals, educating health care professionals on racial dynamics, and fostering resilience and racial stamina, to address disparities within the non-White autistic community.</p><p><strong>Community brief: </strong><b>Why is this an important issue?:</b> Non-White autistic individuals often do not receive the same support and recognition as White autistic people. Most research and advocacy in autism are led by White individuals, which can overlook or misrepresent the needs and experiences of non-White individuals. This study examines how being non-White affects autistic people and how they are treated differently, aiming to bring more attention and fairness to our ex","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"8 4","pages":"710-719"},"PeriodicalIF":0.0,"publicationDate":"2024-12-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13315299/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148364244","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":"Unheard Voices: A Systematic Literature Review of Studies Using Self-Report Methods to Gather the Perspectives of Autistic Adults with Intellectual Disability.","authors":"Vicki Gibbs, Ru Ying Cai, Abigail Love, Chris Edwards, Mustafa Al Ansari","doi":"10.1089/aut.2024.0272","DOIUrl":"10.1089/aut.2024.0272","url":null,"abstract":"<p><strong>Background: </strong>Autistic individuals with intellectual disability remain significantly underrepresented in research, particularly in studies that capture their lived experiences through self-report methods. This systematic review critically examines existing research employing self-report methods in studies where the focus is on autistic adults who have intellectual disability, evaluating the scope of this research, the self-report measures used, and the extent of community involvement.</p><p><strong>Methods: </strong>We conducted a systematic literature review in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. We searched PsycINFO, Scopus, MEDLINE, ERIC, CINAHL, and Web of Science for studies published between January 2013 and July 2023. We conducted a narrative synthesis to evaluate study characteristics, the use of self-report measures, and the involvement of autistic individuals and their communities in the research process.</p><p><strong>Results: </strong>Only 14 studies met the inclusion criteria. The majority focused narrowly on evaluating interventions, with little attention paid to exploring the broader lived experiences of autistic adults with intellectual disability. We identified 24 self-report measures, yet only two had been validated specifically for individuals with intellectual disability. Furthermore, less than half of the remaining measures reported the use of any adaptations or accommodations such as visual aids or simplified language. Alarmingly, community involvement was almost entirely absent, with no studies incorporating co-production with autistic individuals.</p><p><strong>Conclusions: </strong>This review reveals a critical and urgent need for autism research that genuinely includes and represents autistic adults with intellectual disability. It is imperative that future research prioritizes the development and rigorous validation of accessible self-report tools, expands its focus beyond intervention outcomes, and commits to the meaningful involvement of autistic individuals throughout the research process. Addressing these profound gaps is essential for building an equitable and inclusive body of knowledge that fully recognizes and responds to the diverse experiences within the autistic community.</p><p><strong>Community brief: </strong><b>Why is this an important issue?:</b> Autistic people with intellectual disabilities are often left out of research that tries to understand the experiences of autistic individuals. Because of this, their unique needs and challenges might not be fully understood or considered when creating support services. Most research relies on the opinions of parents, teachers, and clinicians instead of hearing directly from autistic people, especially those with intellectual disabilities.<b>What is the purpose of the review?:</b> This study aimed to look at research that directly asks autistic adults with intellectual disabilities abo","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"8 4","pages":"606-622"},"PeriodicalIF":0.0,"publicationDate":"2024-12-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13315303/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148364218","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":"Integrating Positive Psychology and Autism: A Roundtable.","authors":"Patricia Wright, Rachel Moseley, Dan Tomasulo, Hari Srinivasan, Jodie Wilson, Sara Woods, Tayyab Rashid","doi":"10.1089/aut.2024.38246.pw","DOIUrl":"10.1089/aut.2024.38246.pw","url":null,"abstract":"","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"6 4","pages":"389-400"},"PeriodicalIF":0.0,"publicationDate":"2024-12-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11861063/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143525359","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":"\"It Has Shown Me How Much I Am Capable Of\": An Exploration of Autistic Burnout Experiences in Motherhood.","authors":"Ashton Ferguson, David Martin, Amy Pearson","doi":"10.1089/aut.2024.0282","DOIUrl":"10.1089/aut.2024.0282","url":null,"abstract":"<p><strong>Background: </strong>Research has highlighted a relationship between autistic motherhood and autistic burnout, although autistic mothers' experiences of autistic burnout have not been explored in depth.</p><p><strong>Method: </strong>To address this research gap, we used a participatory approach and a qualitative methodology with the aim of understanding: (1) how autistic mothers experience autistic burnout in relation to their parenting role and (2) what support they need to prevent and recover from this. We recruited 13 autistic mothers via social media to participate in an online semi-structured interview. We analyzed these interviews using inductive reflexive thematic analysis.</p><p><strong>Results: </strong>We developed four main themes. Theme 1, \"Depletion,\" focuses on the contributory factors to autistic burnout. Theme 2, \"You have to just get up and keep going,\" demonstrates how autistic mothers continued to care for and maintain their relationships with their children while experiencing autistic burnout. Theme 3, \"New realizations,\" reveals how autistic burnout impacted autistic mothers' self-understanding and self-awareness. Theme 4, \"We need support too,\" discusses the availability and accessibility of support for autistic mothers and their subsequent experiences of this. Findings highlight that autistic mothers' difficulties associated with their autistic burnout are compounded by a lack of autism acceptance and understanding from others, although they felt that burnout did not impact their parenting capacity.</p><p><strong>Conclusions: </strong>We provide several recommendations to improve outcomes for autistic mothers, including a need for increased autistic-led training for professionals, and for the development of formal, autistic-led peer support services and community groups.</p><p><strong>Community brief: </strong><b>Why is this an important issue?:</b> Autistic mothers experience a lot of pressures (e.g., social demands), which can be very stressful and might lead to autistic burnout (extreme exhaustion experienced by autistic people that can make it hard for them to think and act). So far, we know very little about the experience of burnout in autistic motherhood. Knowing more could help us put better support in place.<b>What was the purpose of this study?:</b> We aimed to explore the experience of autistic burnout in motherhood.<b>What did the researchers do?:</b> We interviewed 13 autistic mothers about their experiences of burnout. Our questions included things such as \"how did you first realize you were experiencing autistic burnout?\" We used an inductive, reflexive thematic analysis. This is a form of qualitative analysis where researchers look at what people have said and develop common themes (or patterns) across participants.<b>What were the results of the study?:</b> We developed four main themes. In theme 1, \"Depletion,\" we focused on the things that led to autistic burnout, such as feeling responsible f","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"8 4","pages":"634-645"},"PeriodicalIF":0.0,"publicationDate":"2024-11-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13315298/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148364123","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":"Ethical Complexities and Concerns Surrounding Magnetic Resonance Imaging and the Open-Access Scientific Framework in Autism Research.","authors":"Michelle Sader, Ellen Maloney, Gordon Waiter, Jess Kerr-Gaffney, Kate Tchanturia, Karri Gillespie-Smith, Fiona Duffy","doi":"10.1089/aut.2024.0184","DOIUrl":"10.1089/aut.2024.0184","url":null,"abstract":"<p><p>There is an increasing demand for publicly funded research datasets to be made available for the research community. However, there are multiple issues associated with the use of accessible data, particularly in the Autistic community, where individuals have understandable reservations as to who is accessing these data, what the associated objectives are regarding the use of these data, and why there is insufficient follow-up to individuals who have offered their time to provide their data. These issues particularly extend toward brain imaging research, in which Autistic individuals have expressed long-standing ethical concerns as to how and why this research is performed. This perspective piece aims to outline concerns from the Autistic community in relation to both magnetic resonance imaging (MRI) and the functionality of the open-access scientific framework, utilizing these approaches as examples to outline discipline-wide concerns and barriers to ethical research. This work will also address a bias in research regarding who can reasonably tolerate an MRI scan as an Autistic person and whether certain Autistic characteristics are being disproportionally highlighted and/or suppressed through these research practices. Lastly, this perspective piece will focus on methods with which MRI, open-science philosophy, and general research disciplines can improve practice to conduct ethical autism research.</p><p><strong>Community brief: </strong><b>Why is this topic important?:</b> Over the past 20 years, we have seen a significant increase in autism research. However, this increase in research output has not always aligned with research aims and priorities of the Autistic community. Understanding and addressing Autistic people's concerns around research practice, including the use of brain imaging techniques such as magnetic resonance imaging (MRI) and the use of anonymized databases of brain images that are accessible to researchers, are required to ensure ethical research. Autistic individuals have historically faced medicalized and dehumanizing language by scientific communities, making it essential to prioritize their voices and needs in the research process.<b>What is the purpose of this article?:</b> This perspective piece aims to shed light on the ethical complexities surrounding autism research, focusing on the understandable concerns the Autistic community has regarding MRI techniques and publicly accessible brain imaging data. For instance, only some members of the Autistic community can take part in MRI scans due to overwhelming sensory aspects associated with the process. There are also many ways with which anonymized databases of brain images could potentially be misused, or used to harm the Autistic identity, such as conducting research focusing on \"treating\" autism. By exploring the in-depth perspectives of Autistic individuals, this article seeks to provide recommendations for researchers and clinicians to improve their practices ","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"8 4","pages":"554-562"},"PeriodicalIF":0.0,"publicationDate":"2024-11-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13315283/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148364126","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 Equity in Hospice Care Utilization Among Medicare-Enrolled Autistic Older Adults.","authors":"Lauren Bishop, Melica Nikahd, Bethany J Wolf, Brian W Patterson, Anne Longo, Deondray Radford, Emma Krantz, J Madison Hyer, Brittany N Hand","doi":"10.1089/aut.2024.0007","DOIUrl":"10.1089/aut.2024.0007","url":null,"abstract":"<p><strong>Background: </strong>Better identification of autistic people and increased life expectancy for people with intellectual and developmental disabilities have given rise to an urgent need to better understand end-of-life care in autistic people. We compared hospice utilization of autistic older adults to non-autistic older adults and examined if known inequities in hospice utilization among the general population are exacerbated among autistic older adults.</p><p><strong>Methods: </strong>We analyzed hospice claims from Medicare, which insures Americans over 65 years and covers hospice costs. Our sample included 5,468 autistic older adults and 10,934 matched population comparison older adults who died during 2013-2021. We used multivariable logistic regression to compare these groups on the odds of any, early, intermediate, and late hospice utilization. We defined early hospice utilization as at least 28 days before death, intermediate as 4-27 days before death, and late as within 3 days of death. Interaction terms were used to assess whether effects were modified by beneficiary's sex, race, or rurality. In a sensitivity analysis, we repeated our analyses in unmatched samples.</p><p><strong>Results: </strong>The autistic older adult and matched population comparison groups had similar odds of any hospice utilization (OR: 1.05; 95% CI: 0.98-1.13), early (OR: 1.01; 95% CI: 0.91-1.11), intermediate (OR: 1.03; 95% CI: 0.95-1.13), and late hospice (OR: 1.07; 95% CI: 0.96-1.19). In our models evaluating the impact of other known inequities, we did not find significant interactions between autism diagnostic status and sex, race, or rurality. Results were similar in the unmatched samples.</p><p><strong>Conclusion: </strong>Given the body of literature documenting health disparities in autistic people, our findings are heartening, suggesting Medicare-enrolled autistic older adults experience similar receipt and timing of hospice as non-autistic peers. Our findings highlight the potential power of health policies that provide zero cost, universal benefits to Americans in reducing healthcare utilization disparities among autistic people.</p>","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-11-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12959372/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147367385","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}