Autism in Adulhood – 5-2 – June 2023

Revues de sommaires

LGBTQIA+ Autistic Adults

1. Strang JF, Fischbach AL. A Special Issue of Autism in Adulthood Dedicated to the Intersection of Autism and the Broad LGBTQ+. Autism in Adulthood;2023 (2023/06/01);5(2):109-111.

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2. Gratton FV, Strang JF, Song M, Cooper K, Kallitsounaki A, Lai M-C, Lawson W, van der Miesen AIR, Wimms HE. The Intersection of Autism and Transgender and Nonbinary Identities: Community and Academic Dialogue on Research and Advocacy. Autism in Adulthood;2023 (2023/06/01);5(2):112-124.

Many transgender people are autistic. Community expressions of the autism transgender intersection abound. Some commentators have questioned the proportional overrepresentation of autism among gender-diverse people, suggesting these individuals may not be truly autistic or truly transgender. However, increasing evidence challenges assertions that deny the authenticity of co-occurring autistic and transgender identities. Specifically, research by authors of this article indicates autistic transgender people show neurophenotypes generally consistent with cisgender autistic people and implicit gender phenotypes consistent with nonautistic transgender people. This article features a dialogue between eight leading experts in the field of intersectional autism and gender diversity, including clinicians, researchers, community advocates, and experts who are themselves autistic transgender. Key topics of discussion included: how research findings on autism and gender diversity inform respectful and supportive responses to autistic transgender people; the benefits and harms of increased societal attention toward the autism transgender intersection; and research and advocacy priorities. The expert panel concluded the following: (1) it is important to respect transgender autistic people’s wellness and resilience, while also acknowledging the pathologization and stigmatization they face; (2) autistic gender-diverse people are experts of their own identity and should be involved in all aspects of research and clinical care; (3) research is needed to understand the disparities autistic transgender people face; (4) attempts to restrict autistic transgender people’s access to gender care are unsupported by existing research; (5) adult gender care may benefit from incorporating universal design principles and neurodiversity-affirming strategies to reduce barriers to care and improve clinician?client communication in treatment delivery and the informed consent process; (6) cross-cultural and cross-societal research will improve best care practices in diverse contexts; (7) research and advocacy must be inclusive across ethnoracial identities, including in leadership and perspectives represented; and (8) a life span developmental framework is needed for adult research in this field.

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3. Pemment J. Life As a Sapiosexual Autist. Autism in Adulthood;2023 (2023/06/01);5(2):125-126.

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4. McAuliffe C, Walsh RJ, Cage E. “My whole life has been a process of finding labels that fit”: A Thematic Analysis of Autistic LGBTQIA+ Identity and Inclusion in the LGBTQIA+ Community. Autism in Adulthood;2022 (2023/06/01);5(2):127-138.

Background: Being nonheterosexual and noncisgender appears to be more common among autistic people. This intersection of identities is often stigmatized in research and society. However, we know that community involvement can protect against negative mental health outcomes associated with being a minority; researchers found this effect in separate studies examining participation in the autistic and Lesbian, Gay, Bisexual, Trans, Queer, Intersex, Asexual plus other gender and sexual orientation-based identity (LGBTQIA+) communities. This study examined how autistic LGBTQIA+ individuals navigate their multiple marginalized identities and the LGBTQIA+ community. Methods: Twelve autistic LGBTQIA+ people from the United Kingdom took part in semistructured interviews. Questions focused on identity and community. We analyzed the interviews using reflexive thematic analysis. Results: We identified four overarching themes?Identity (Re)Development, Navigating Authenticity, Exclusion from Community Spaces, and Creating Change. Participants viewed accessing a community of similar others as a means of increasing understanding, self-knowledge, and self-acceptance. We identified several barriers to inclusion, including accessibility and gatekeeping. Participants discussed strategies to combat these obstacles, such as the creation of intersectional community spaces and activism and representation as a means of increasing autism understanding. Conclusions: This study suggests that similar to other marginalized groups, autistic LGBTQIA+ individuals are motivated to engage in communities relevant to their identities. However, community spaces for autistic LGBTQIA+ are often inaccessible due to social, sensory, and identity-based barriers. Participants highlighted autism understanding as a barrier to coming out both in community and noncommunity settings. This suggests that improving autism acceptance and understanding is crucial to achieve accessible, intersectional, and inclusive community spaces.

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5. McQuaid GA, Gendy J, Lee NR, Wallace GL. Sexual Minority Identities in Autistic Adults: Diversity and Associations with Mental Health Symptoms and Subjective Quality of Life. Autism in Adulthood;2022 (2023/06/01);5(2):139-153.

Background: Although disparities in mental health and subjective quality of life (QoL) have been reported for autistic adults, reasons for these disparities are poorly understood. A potential factor in these disparities is exposure to social stressors related to minority status (i.e., minority stress), including stigma and discrimination. Autistic individuals are more likely than nonautistic individuals to be from groups with other minority identities, including sexual minorities (i.e., sexual orientations such as asexual, bisexual, gay). However, to date, few studies have examined whether sexual minority autistic adults experience diminished mental health relative to heterosexual autistic adults, and no research has examined subjective QoL for sexual minority compared with heterosexual autistic adults. Methods: Participants were 651 autistic adults aged 18.5 to 83.3 years recruited through Simons Powering Autism Research’s Research Match. All participants resided in the United States. Participants completed surveys online, including measures of anxious and depressive symptomatology, perceived stress, and subjective QoL. Participants reported their sexual orientation and other sociodemographic variables. Results: A large proportion of autistic adults reported a sexual minority identity (41.2%), and a diversity of sexual identities was reported. Sexual minority autistic adults reported poorer mental health and lower subjective QoL across all assessed domains relative to heterosexual autistic adults. Conclusion: Understanding factors that may be associated with poorer mental health and decreased subjective QoL in autistic adults is critical and has been identified as a research priority by autistic stakeholders. The findings reported here underscore the need to examine mental health and subjective QoL disparities among autistic individuals within a societal context, taking into consideration the potential of intersecting minority identities and increased social stressors, as these added stressors may increase risks for poorer outcomes.

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6. Coburn KL, Williams DL. Quantitative Analysis of Narrative Discourse by Autistic Adults of Underrepresented Genders. Autism in Adulthood;2022 (2023/06/01);5(2):154-164.

Background: Narrative production is an important part of the diagnostic process for autism. Most existing research on narrative production by autistic people has focused on cisgender men and boys. Members of other genders (i.e., nonbinary people, transgender men, and trans and cisgender women) are underrepresented in the research literature. Research with non-autistic adults consistently reports gender differences in narrative production. When adults whose genders are underrepresented seek autism diagnosis as adults, they may be misdiagnosed due to misconceptions about autistic communication that are based on cisgender male speakers. Methods: Twenty autistic adults of various genders each told four narratives: two based on a picture and two about their personal experiences. Dependent variables measured narrative length, grammatical complexity, vocabulary diversity, filled pauses, and internal state terms. Researchers used nonparametric statistics to compare groups of (1) cisgender men and all other participants, (2) participants assigned male at birth and those assigned female, and (3) self-identified women, nonbinary people, and men. Results: Women used significantly less diverse vocabulary than men. Women used more terms to refer to internal states than both nonbinary people and men, but this finding was not significant after correction for multiple comparisons. All other comparisons were not statistically significant. Conclusions: Autistic narrators of diverse genders have more linguistic similarities than differences. Autistic women may be more likely to talk about emotions and other internal states than autistic men. Gender-based expectations for spoken communication about internal states should be carefully reconsidered. More research is necessary to determine whether the results of this small study will generalize to larger samples of autistic people whose genders are currently underrepresented in the research literature.

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7. Wallisch A, Boyd BA, Hall JP, Kurth NK, Streed Jr CG, Mulcahy A, McMaughan DJ, Batza K. Health Care Disparities Among Autistic LGBTQ+ People. Autism in Adulthood;2023 (2023/06/01);5(2):165-174.

Background: Lesbian, gay, bisexual, transgender, or queer (LGBTQ+) people and disabled people experience disparities in access to health care compared with others. However, we have yet to understand how health care disparities may be further exacerbated at the intersection of disability and LGBTQ+ identity, particularly among autistic people. Objectives: The primary goals of this study were to (1) examine differences in unmet health care needs and health status between LGBTQ+ autistic people and straight/cisgender autistic people and (2) explore how state policies and demographics predict the unmet health care needs of the autistic LGBTQ+ people. Methods: We conducted a cross-sectional analysis using data from the 2019 National Survey on Health and Disability that included a subsample of autistic participants, with 62 LGBTQ+ adults and 58 straight/cisgender adults. To address our first study goal, we used an independent samples t-test, and to address our second study goal, we used Poisson regression. Results: The LGBTQ+ group reported significantly more days of poor physical and mental health, more co-occurring diagnoses, and more unmet health care needs than the straight/cisgender group. For LGBTQ+ people, protective state health care laws and a lower income resulted in significantly more health care needs being met. Conclusions: Findings from this study suggest that the intersection of an LGBTQ+ identity and autism is associated with greater disparities in physical and mental health as well as unmet health care needs; however, state policies prohibiting discrimination of LGBTQ+ people may act as a protective factor and result in fewer unmet health care needs. Future research should examine additional structural factors that may mitigate health inequities for autistic LGBTQ+ people.

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8. Strang JF, McClellan LS, Raaijmakers D, Caplan R, Klomp SE, Reutter M, Lai M-C, Song M, Gratton FV, Dale LK, Schutte A, de Vries ALC, Gardiner F, Edwards-Leeper L, Minnaard AL, Eleveld NL, Corbin e, Purkis Y, Lawson W, Kim D-Y, van Wieringen IM, Rodríguez-Roldán VM, Harris MC, Wilks MF, Abraham G, Balleur-van Rijn A, Brown LXZ, Forshaw A, Wilks GB, Griffin AD, Graham EK, Krause S, Pervez N, Bok IA, Song A, Fischbach AL, van der Miesen AIR. The Gender-Diversity and Autism Questionnaire: A Community-Developed Clinical, Research, and Self-Advocacy Tool for Autistic Transgender and Gender-Diverse Young Adults. Autism in Adulthood;2023 (2023/06/01);5(2):175-190.

Background: Autistic transgender people face unique risks in society, including inequities in accessing needed care and related mental health disparities. Given the need for specific and culturally responsive accommodations/supports, the characterization of key experiences, challenges, needs, and resilience factors within this population is imperative. This study developed a structured self-report tool for autistic transgender young adults to communicate their experiences and needs in a report format attuned to common autistic thinking and communication styles. Methods: This cross-nation project developed and refined the Gender-Diversity and Autism Questionnaire through an iterative community-based approach using Delphi panel methodology. This proof-of-principle project defined ?expertise? broadly, employing a multi-input expert search approach to balance academic-, community-, and lived experience-based expertise. Results: The expert collaborators (N?=?24 respondents) completed a two-round Delphi study, which developed 85 mostly closed-ended items based on 90% consensus. Final item content falls within six topic areas: the experience of identities; the impact of experienced or anticipated discrimination, bias, and violence toward autistic people and transgender people; tasks and experiences of everyday life; gender diversity- or autism-related care needs and history; the experience of others doubting an individual’s gender identity and/or autism; and the experience of community and connectedness. The majority of retained items relate to tasks and experiences of everyday life or the impact of experienced or anticipated discrimination, bias, and violence. Conclusions: This study employed a multipronged multimodal search approach to maximize equity in representation of the expert measure development team. The resulting instrument, designed for clinical, research, and self-advocacy applications, has parallel Dutch and English versions and is available for immediate use. Future cross-cultural research with this instrument could help identify contextual risk and resilience factors to better understand and address inequities faced by this large intersectional population.

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9. Bruce H, Munday K, Kapp SK. Exploring the Experiences of Autistic Transgender and Non-Binary Adults in Seeking Gender Identity Health Care. Autism in Adulthood;2023 (2023/06/01);5(2):191-203.

Background: This study sought to obtain an in-depth understanding of autistic transgender and/or non-binary adults’ experiences in accessing, or trying to access, gender identity health care (GIH). To our knowledge, no prior study researched this topic. Methods: Through semi-structured interviews, we obtained the first-hand experiences of 17 participants. H.B. (cisgender, non-autistic) conducted a reflexive thematic analysis using an inductive approach, in collaboration with K.M., an autistic transgender disability community researcher, and under the supervision of S.K.K., a cisgender autistic autism researcher. Results: Thematic analysis determined that poor knowledge of professionals, accessibility issues, and bureaucratic and economic barriers impacted participants’ experiences when accessing GIH. Participants experienced a perceived lack of professional knowledge around autism and gender diverse health care needs, limited communication methods and accommodations, and misdiagnosis of mental health difficulties. Accessibility issues included unmet sensory needs, disruption to routine, and a lack of local provision. Further, participants shared that they struggled with unclear processes, standardization of care, long waiting lists, and confusing or inaccessible insurance coverage. Recommendations for improvements highlighted the need to listen to service users to positively impact their experiences in accessing GIH. Conclusion: This study suggests that more training needs to be given to health care providers and professionals around autistic experience to help improve providers’ competence in communication and providing person-centered accommodations. More training around gender diverse identities is needed, as well as increased knowledge on the co-occurrence of autism and transgender/non-binary identities, to positively impact patient experiences and help improve access to care.

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10. Steinberg H, Garfield T, Becker A, Shea L. What Category Best Fits: Understanding Transgender Identity in a Survey of Autistic Individuals. Autism in Adulthood;2022 (2023/06/01);5(2):204-209.

Introduction: Calls for improved measures of gender identity to understand the experience of transgender individuals have grown rapidly in the past 5 years. The need for methodological innovation in this topic area has particular importance for the autistic population since a higher co-occurrence of transgender identities among autistic people has been documented but is not well understood. We use a survey with questions that reflect standards in 2018 to demonstrate how binary conceptualizations of gender did not adequately capture gender identities of transgender autistic individuals. Methods: Using descriptive statistics from a statewide survey of 1527 autistic adults (mean age 27.5 years), this study compared self-reported survey responses to close-ended standard questions at the time about gender identity to understand shortcomings in capturing this population authentically. Results: We found a mismatch between respondents answering that they were transgender, the sex assigned at birth, and gender identity on separate questions. We postulate that transgender men and women were likely selecting binary responses when asked about gender identity. Furthermore, we found that many qualitative responses reported in the self-selected ?other? category reflected nonbinary identities and utilized specific terminology that revealed nuance in how they understood gender identities. Conclusions: We urge researchers to provide multiple flexible options when measuring gender identity in autistic populations as they are likely to encompass many identities. We endorse best practices for measuring gender identity for autistic research.

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11. Kallitsounaki A, Williams DM. Brief Report: An Exploration of Alexithymia in Autistic and Nonautistic Transgender Adults. Autism in Adulthood;2023 (2023/06/01);5(2):210-216.

Background: Research has shown that many autistic people have alexithymia, a psychological trait characterized by difficulties in identifying and describing emotions. It is also now clear that there is a high rate of autism among transgender people, but we know little about the intersection of autism and gender diversity or about the clinical features of autistic transgender individuals. Methods: Seventy-eight nonautistic transgender, 56 autistic transgender, 106 nonautistic cisgender, and 107 autistic cisgender adults completed the Toronto Alexithymia Scale-20 and the Autism-spectrum Quotient as part of an online study. We also used the General Alexithymia Factor Score-8 as an additional alexithymia score. Results: We found that nonautistic transgender participants reported significantly higher mean levels of alexithymia than nonautistic cisgender participants, and that there was a significant overrepresentation of individuals in this group who met the clinical cutoff for alexithymia. The difference in alexithymia between autistic cisgender and autistic transgender participants was nonsignificant, with >50% of each group scoring above the clinical cutoff point. Of note, when we used the General Alexithymia Factor Score-8, the difference between autistic transgender participants and autistic cisgender participants was significant, with autistic transgender participants reporting higher mean levels of alexithymia. Conclusion: Results suggest that nonautistic transgender individuals might be more prone to experience alexithymia (including at clinically significant levels) than nonautistic cisgender people. When autism occurs in transgender people, the average level and clinical rate of alexithymia is higher than among nonautistic transgender people and potentially higher than among autistic cisgender people. Our findings are in keeping with evidence of a subgroup of transgender people with ?subclinical autism? and inconsistent with the notion that autism among transgender and gender diverse people is a ?phenomimic? of autism. Lastly, our study highlights the potential importance of screening autistic and nonautistic transgender people for alexithymia.

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