Kristina Lopez, Christina Nicolaidis, Arianne Garcia, T C Waisman, M Ariel Cascio, Bin Feng
{"title":"An Expert Roundtable Discussion on Intersectionality and Autism in Adulthood.","authors":"Kristina Lopez, Christina Nicolaidis, Arianne Garcia, T C Waisman, M Ariel Cascio, Bin Feng","doi":"10.1089/aut.2022.29021.klo","DOIUrl":"10.1089/aut.2022.29021.klo","url":null,"abstract":"","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"4 4","pages":"258-264"},"PeriodicalIF":0.0,"publicationDate":"2022-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9908277/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10765249","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":"Intersectional Stigma for Autistic People at Work: A Compound Adverse Impact Effect on Labor Force Participation and Experiences of Belonging.","authors":"Nancy Doyle, Almuth McDowall, Uzma Waseem","doi":"10.1089/aut.2021.0082","DOIUrl":"10.1089/aut.2021.0082","url":null,"abstract":"<p><strong>Background: </strong>Little research addresses the experiences of autistic people at work, yet employment prospects remain bleak. The extant literature takes a largely remedial perspective and does not focus on harnessing this population's considerable talents. In global organizational practice, several programs purposefully target autistic people for their abilities. However, preliminary evidence suggests that such programs are inadvertently attracting mainly White males, to the exclusion of other demographics. Therefore, stigma surrounding autism at work remains, creating potential compound adverse impacts by marginalizing identities, including gender, race, ethnicity, sexuality, and socioeconomic status. We explored the intersection of autism with other marginalizing identities in the context of work. The research focused on labor force participation for autistic people and, for those in employment, perceptions of exclusion and inclusion. We compared the aforementioned variables by gender identity, racial identity, sexuality, socioeconomic background, and geographic origin.</p><p><strong>Methods: </strong>We undertook a global cross-sectional survey, advertised through various social media platforms and promoted directly to relevant organizations. The survey included a range of validated measures as well as demographic information. We analyzed the data with frequencies, cross tabulations, chi-square tests, and non-parametric, group-wise comparisons.</p><p><strong>Results: </strong>We found preliminary evidence of reduced rates of employment participation by race and geographic location. Females and non-binary people had lower perceptions of inclusion and belonging at work. The perception of accommodation provision had a strong association with inclusion and belonging; more so than incidental provision of flexibility in environment and scheduling not framed as a specific accommodation.</p><p><strong>Conclusions: </strong>The findings highlight the relational aspects of accommodation and a more universal inclusion perspective. We urge practitioners and researchers to monitor employment participation and levels of inclusion/exclusion using intersectional demographic identification. We appeal for cross-cultural collaboration with academic institutions outside the anglosphere to improve our knowledge of global programs and their impact.</p>","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"4 4","pages":"340-356"},"PeriodicalIF":0.0,"publicationDate":"2022-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9908290/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10276917","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}
Kayla M Malone, Jamie N Pearson, Kayla N Palazzo, Lonnie D Manns, Amelia Q Rivera, DeVoshia L Mason Martin
{"title":"The Scholarly Neglect of Black Autistic Adults in Autism Research.","authors":"Kayla M Malone, Jamie N Pearson, Kayla N Palazzo, Lonnie D Manns, Amelia Q Rivera, DeVoshia L Mason Martin","doi":"10.1089/aut.2021.0086","DOIUrl":"10.1089/aut.2021.0086","url":null,"abstract":"<p><p>Black autistic individuals, regardless of age, have not been centered in autism research. Instead, they often exist on the margins-on the periphery of autism research. In fact, Black autistic adults are largely absent from the literature. Most participants in autism research are majority-white autistic individuals and families. In this conceptual article, we use intersectionality and Dis/ability Studies and Critical Race Theory theories to contextualize Black autistic adults' experiences. Second, we argue that systemic disparities and methodological concerns are two contributors to the scholarly neglect of Black autistic adults in autism research. Third, we provide guidelines to support researchers in moving from neglect to inclusive research <i>with</i> Black autistic adults.</p>","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"4 4","pages":"271-280"},"PeriodicalIF":0.0,"publicationDate":"2022-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9908289/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10765245","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}
Shana R Cohen, Kohrissa Joseph, Sarah Levinson, Jan Blacher, Abbey Eisenhower
{"title":"\"My Autism Is My Own\": Autistic Identity and Intersectionality in the School Context.","authors":"Shana R Cohen, Kohrissa Joseph, Sarah Levinson, Jan Blacher, Abbey Eisenhower","doi":"10.1089/aut.2021.0087","DOIUrl":"10.1089/aut.2021.0087","url":null,"abstract":"<p><strong>Background: </strong>School is an important context for identity development across childhood and adolescence. These formative experiences impact adulthood. Minimal research has examined first-person autistic perspectives of how school experiences shape autistic identity as well as other intersecting identities. In this study, we examined the school messages that autistic individuals received and how individuals engaged with these external messages to formulate their identities.</p><p><strong>Methods: </strong>Ten U.S.-based autistic adolescents and adults ages 15-35 participated in qualitative interviews about their elementary through secondary school experiences, interactions with teachers and peers, and how these shaped their identities. Two interviewees also engaged in three follow-up interviews each for member checking and further data gathering. Using a critical constructivist approach informed by grounded theory, we coded interviews inductively. We ensured the trustworthiness of data through peer debriefing, reflexive journaling, memoing, and member checking.</p><p><strong>Results: </strong>In the school context, autistic students received stigmatizing messages from teachers and peers regarding their autism. These messages varied in relation to students' other identities, including race and gender. Participants felt that, following autism disclosure, teachers viewed them narrowly through an autism lens. Participants actively resisted these negative messages from teachers and peers by reclaiming their autistic identity. They reframed and redefined their autistic identity, embraced their autism-related strengths, and actively made choices about how, when, and to whom to disclose their autism. Decisions around autism disclosure intersected with decisions to emphasize other identities such as race or mental health, especially when these identities were more visible or more acceptable to others.</p><p><strong>Conclusions: </strong>The school context conveyed powerful, stigmatizing messages around autism. In response, autistic students actively reclaimed and shaped their identities to prioritize a positive, empowered sense of self. Findings show a need for educators to model positive perceptions of autism, build an inclusive school community, and advocate for autistic representation in schools to facilitate autism-affirming messages.</p>","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"4 4","pages":"315-327"},"PeriodicalIF":0.0,"publicationDate":"2022-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9908286/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9259619","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}
Bérengère G Digard, Rachael Davis, Andrew Stanfield, Antonella Sorace, Sue Fletcher-Watson
{"title":"\"The Languages That You Know Draw the Boundary of Your World\": A Thematic Analysis of the Experiences of Autistic Bilingual Adults Living in the United Kingdom.","authors":"Bérengère G Digard, Rachael Davis, Andrew Stanfield, Antonella Sorace, Sue Fletcher-Watson","doi":"10.1089/aut.2021.0077","DOIUrl":"10.1089/aut.2021.0077","url":null,"abstract":"<p><strong>Background: </strong>Although being bilingual (knowing two or more languages) is becoming a more common experience globally, little is known about the combined experience of bilingualism and autism. Research currently available focuses on quantifying language and cognitive development, and the only two qualitative accounts of first-hand experiences are from either bilingual children or highly multilingual adults (with four languages or more), which may not represent the wider autistic bilingual population. All other accounts focus on parents or practitioners. This qualitative study reports the experiences of autistic bi- and multilingual adults, focusing on barriers and enablers to language learning and the reported benefits of bilingualism.</p><p><strong>Methods: </strong>Thirty-nine U.K.-based autistic bilingual adults (41% female, mean age = 33.2 years, range = 16-61) with knowledge of two to seven languages (mean = 3.6, standard deviation = 1.4) completed an online Demographic and Language Questionnaire, including three open-ended questions about the interplay between autism and bilingualism. A thematic analysis was conducted on the responses to these open-ended questions.</p><p><strong>Results: </strong>Participants perceived many opportunities and benefits brought by bilingualism, in terms of relationships, hobbies, mobility, employment, education, and cultural insight. Respondents reported social communication as being a major benefit of being bilingual, and discussed how bilingualism had broadened their mindset, while identifying factors that had enabled or challenged their language learning journey.</p><p><strong>Conclusions: </strong>This study builds upon the few reports available to highlight the experiences that are shared by autistic bilingual people regardless of the number of languages they know. It is the first study to report the perspectives of U.K.-based autistic bilingual adults who, in most cases, grew up in a bilingual environment. Accounts of the factors that can facilitate or hinder language learning will inform the development of strategies to better support autistic people. These findings have implications for bilingual families and practitioners supporting autistic bilingual people.</p>","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"4 4","pages":"328-339"},"PeriodicalIF":0.0,"publicationDate":"2022-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9908287/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10765250","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":"Intersectionality Within Critical Autism Studies: A Narrative Review.","authors":"Nathan V Mallipeddi, Rachel A VanDaalen","doi":"10.1089/aut.2021.0014","DOIUrl":"10.1089/aut.2021.0014","url":null,"abstract":"<p><p>The aim of this narrative review was to examine intersectionality within critical autism studies. A growing body of evidence has demonstrated the importance of intersectional frameworks in highlighting the diverse experiences of marginalized communities. Many disability studies researchers investigated intersectionality to elucidate the impact of race, gender, sexuality, class, and other constructs on disability identification. Within critical autism studies, a field that emerged to challenge the deficit-laden, pathologizing autism discourses favored by the medical community, intersectionality has started to become an integral component of the literature. This review highlights intersectional frameworks utilized to explore autism in both academic and nonacademic contexts, to provide a foundation for future study. Upon analysis, we found overarching themes regarding the explicit, implicit, and descriptive approaches to intersectionality, racial and gender biases within critical autism studies, and the multidisciplinary nature of intersectionality and critical autism studies. We finish the review with recommendations for how to more fully address the experiences of all autistic people-particularly of racial, gender, and sexual minority individuals-in future study. Our recommendations include utilizing intersectionality as an analytical lens for describing previously overlooked phenomena and questioning central tenets of methodology and processes, including developing research questions, analyzing data, and writing results.</p>","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"4 4","pages":"281-289"},"PeriodicalIF":0.0,"publicationDate":"2022-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9908281/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9259621","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}
Simone J Capp, David Mason, Emma Colvert, Jessica Agnew-Blais, Francesca Happé
{"title":"COVID-19 and Perceived Changes to Quality of Life, Anxiety, Depression, and Loneliness in Autistic and Other Neurodivergent U.K. Adults.","authors":"Simone J Capp, David Mason, Emma Colvert, Jessica Agnew-Blais, Francesca Happé","doi":"10.1089/aut.2021.0078","DOIUrl":"10.1089/aut.2021.0078","url":null,"abstract":"<p><strong>Background: </strong>In the United Kingdom, we have experienced many changes to our daily lives as a result of COVID-19. Autistic and other neurodivergent (ND, e.g., those with attention-deficit hyperactivity disorder) adults may be more vulnerable to negative effects of the pandemic due to pre-existing mental health disparities and unmet support needs. Furthermore, there is little research, either pandemic related or otherwise, which considers how the experiences of autistic adults with additional intersecting ND identities might differ from those without.</p><p><strong>Methods: </strong>We collected data from an online survey during June 2020 to September 2020 to explore the psychological impact of the coronavirus pandemic on U.K. adults (<i>N</i> = 286, age 18-72 years). Participants included neurotypical (NT) adults (<i>N</i> = 98), autistic adults (<i>N</i> = 73), other ND adults (<i>N</i> = 53), as well as autistic adults with an additional intersecting ND identity (<i>N</i> = 63). We measured and compared levels of quality of life (QoL), depression, anxiety, and loneliness across groups as well as perceived change in these as a result of the pandemic.</p><p><strong>Results: </strong>Autistic adults, with and without additional ND identities, had consistently low QoL and high anxiety, depression, and loneliness compared with NT adults. We found no differences in these areas between autistic adults with and without additional intersecting ND identities. In some areas, non-autistic ND participants were also doing poorly compared with their NT peers. Many participants felt that their QoL, mental health, and loneliness had worsened due to the pandemic, and this was largely similar across groups.</p><p><strong>Conclusions: </strong>These results highlight that COVID-19 may have led to increased need and demand for mental health services across the U.K. adult population. Both autistic and ND adults may be in particular need of increased (and improved) mental health and well-being support. This is likely because of pre-existing differences in mental health and well-being as well as individuals facing further difficulties as a result of the pandemic.</p>","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"4 3","pages":"233-246"},"PeriodicalIF":0.0,"publicationDate":"2022-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9645677/pdf/aut.2021.0078.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10131447","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":"Adapting Drug and Alcohol Therapies for Autistic Adults.","authors":"Mark Brosnan, Sally Adams","doi":"10.1089/aut.2021.0047","DOIUrl":"10.1089/aut.2021.0047","url":null,"abstract":"<p><strong>Background: </strong>Autistic people may be at a higher risk of drug and alcohol misuse than the general population. Autistic people, however, are under-represented within drug and alcohol support services. This is the first survey of drug and alcohol therapists' perceptions of current service provision for autistic clients and recommendations for reasonable adjustments that therapists can make to enhance successful outcomes.</p><p><strong>Methods: </strong>We conducted an online survey of 122 drug and alcohol therapists, exploring therapists' demographics, training and experience with autistic clients, approaches and adaptations used with autistic clients, and therapists' confidence with autistic clients. Within two focus groups, 11 members of the autistic and broader autism (e.g., family members, professionals) communities reflected on the reasonable adjustments reported by therapists.</p><p><strong>Results: </strong>Most therapists had autistic clients and most therapists had received no autism-specific training. Alcohol misuse was the most common presenting issue, and most therapists reported that treatment outcomes were less favorable for autistic clients than for other groups. Therapists perceived that barriers to successful outcomes were (1) a lack of autism-specific training, (2) a need to adapt therapy for autistic clients, and (3) a lack of shared perspective between the therapist and the autistic client. Previous research has identified a range of reasonable adaptations and, when asked, therapists were moderately confident in their ability to deliver these. Members of the autistic and broader autism communities coproduced guidance detailing how therapists can best adapt their practice for autistic clients including how to structure sessions and the language to use within sessions.</p><p><strong>Conclusion: </strong>This study highlights a need for practical and theoretical training for drug and alcohol therapists to support successful adaptation to current service provision for autistic clients and to develop a shared perspective on the desired aims and outcomes of the therapeutic process.</p>","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"4 3","pages":"214-223"},"PeriodicalIF":0.0,"publicationDate":"2022-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9645670/pdf/aut.2021.0047.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10133486","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}
Isabelle Verhulst, Keren MacLennan, Anthony Haffey, Teresa Tavassoli
{"title":"The Perceived Causal Relations Between Sensory Reactivity Differences and Anxiety Symptoms in Autistic Adults.","authors":"Isabelle Verhulst, Keren MacLennan, Anthony Haffey, Teresa Tavassoli","doi":"10.1089/aut.2022.0018","DOIUrl":"10.1089/aut.2022.0018","url":null,"abstract":"<p><strong>Background: </strong>Rates of anxiety are inordinately high in autistic adults. Sensory reactivity differences, such as hyperreactivity (e.g., strong reactions to sound), hyporeactivity (e.g., no, or slower reactions to pain), and seeking (e.g., fascination with spinning objects), are a diagnostic criterion of autism and have been linked with anxiety. Understanding how individuals perceive these to be causally related can impact the assessment and treatment of anxiety. Therefore, we examined the perceived causal relations (PCR) between sensory reactivity differences and anxiety in autistic adults.</p><p><strong>Method: </strong>Two hundred forty-six autistic adults aged 18-76 years took part in an online study. They completed self-report assessments of sensory reactivity differences, and anxiety, followed by the PCR scale, indicating whether they perceived their sensory reactivity differences to be more of a cause or an effect of their anxiety symptoms.</p><p><strong>Results: </strong>We found sensory reactivity hyperreactivity, hyporeactivity, and seeking to be significantly correlated with anxiety. Further, we found total sensory hyperreactivity, and visual, auditory, and olfactory hyperreactivity, to be perceived as significantly more of a cause of anxiety than an effect, and total sensory seeking, and tactile and vestibular seeking, to be perceived as significantly more of an effect of anxiety than a cause.</p><p><strong>Conclusion: </strong>Future individualized approaches to treating anxiety in autistic individuals may benefit from differentiating between potential sensory causes of anxiety (e.g. hypersensitivities) vs. potential sensory effects of anxiety (e.g. sensory seeking behaviors).</p>","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"4 3","pages":"183-192"},"PeriodicalIF":0.0,"publicationDate":"2022-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9648696/pdf/aut.2022.0018.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10131448","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}