Inextricably tied: Nonbinary autistic individuals' views on how their gender identity and autism are connected / Hillary STEINBERG ; Tamara GARFIELD ; Kyle CHVASTA ; Katherine ARDELEANU ; Maci BROWN ; Lindsay SHEA in Autism, 28-12 (December 2024)  

Public ISBD [article]  inAutism > 28-12 (December 2024) . - p.3156-3166 Titre : Inextricably tied: Nonbinary autistic individuals' views on how their gender identity and autism are connected Type de document : Texte imprimé et/ou numérique Auteurs : Hillary STEINBERG, Auteur ; Tamara GARFIELD, Auteur ; Kyle CHVASTA, Auteur ; Katherine ARDELEANU, Auteur ; Maci BROWN, Auteur ; Lindsay SHEA, Auteur Article en page(s) : p.3156-3166 Langues : Anglais (eng) Mots-clés : adults  autism spectrum disorders  LGBT  qualitative research  transgender Index. décimale : PER Périodiques Résumé : This study explores the experiences and identities of nonbinary autistic people, an under-researched population. While past studies have posited a co-occurrence of autism and transgender identity, little research focuses specifically on nonbinary autistic adults. This community-based study draws on interview data from 44 nonbinary participants. Participants expressed nuanced and informed understandings of their gender identities, highlighting fluidity and a rejection traditional binary gender roles. Participants discussed the connection of their autistic and nonbinary identities and how their identity is shaped by external forces such as politics, community, and interpersonal relationships. Findings highlight the need for the inclusion of nonbinary autistic people in autism research and for autism services and programming to be affirming of various gender identities. Lay abstract This study explores the experiences and identities of nonbinary autistic people. The relationship between autistic and nonbinary identities has not been researched in detail. Few studies focus specifically on nonbinary autistic adults. We interviewed 44 nonbinary individuals for this study. Participants had thought-out opinions on gender identity and emphasized identifying with fluidity rather than traditional gender roles. Participants discussed the connection of their autistic and nonbinary identities and how it affected how people saw them and how they saw themselves. We have recommendations for programming, policy, and research from these findings. En ligne : https://dx.doi.org/10.1177/13623613241257600 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=543 [article] Inextricably tied: Nonbinary autistic individuals' views on how their gender identity and autism are connected [Texte imprimé et/ou numérique] / Hillary STEINBERG, Auteur ; Tamara GARFIELD, Auteur ; Kyle CHVASTA, Auteur ; Katherine ARDELEANU, Auteur ; Maci BROWN, Auteur ; Lindsay SHEA, Auteur . - p.3156-3166. Langues : Anglais (eng) in Autism > 28-12 (December 2024) . - p.3156-3166 Mots-clés : adults  autism spectrum disorders  LGBT  qualitative research  transgender Index. décimale : PER Périodiques Résumé : This study explores the experiences and identities of nonbinary autistic people, an under-researched population. While past studies have posited a co-occurrence of autism and transgender identity, little research focuses specifically on nonbinary autistic adults. This community-based study draws on interview data from 44 nonbinary participants. Participants expressed nuanced and informed understandings of their gender identities, highlighting fluidity and a rejection traditional binary gender roles. Participants discussed the connection of their autistic and nonbinary identities and how their identity is shaped by external forces such as politics, community, and interpersonal relationships. Findings highlight the need for the inclusion of nonbinary autistic people in autism research and for autism services and programming to be affirming of various gender identities. Lay abstract This study explores the experiences and identities of nonbinary autistic people. The relationship between autistic and nonbinary identities has not been researched in detail. Few studies focus specifically on nonbinary autistic adults. We interviewed 44 nonbinary individuals for this study. Participants had thought-out opinions on gender identity and emphasized identifying with fluidity rather than traditional gender roles. Participants discussed the connection of their autistic and nonbinary identities and how it affected how people saw them and how they saw themselves. We have recommendations for programming, policy, and research from these findings. En ligne : https://dx.doi.org/10.1177/13623613241257600 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=543

Methods to reduce fraudulent participation and highlight autistic voices in research / Meghan E CAREY in Autism, 29-4 (April 2025)  

Public ISBD [article]  inAutism > 29-4 (April 2025) . - p.859-867 Titre : Methods to reduce fraudulent participation and highlight autistic voices in research Type de document : Texte imprimé et/ou numérique Auteurs : Meghan E CAREY, Auteur ; Kiley J MCLEAN, Auteur ; Kyle CHVASTA, Auteur ; Ashley DE MARCHENA, Auteur ; Anne M ROUX, Auteur Article en page(s) : p.859-867 Langues : Anglais (eng) Mots-clés : autism spectrum disorders  bot  fraud  methods  online research  qualitative research  research participation  scam Index. décimale : PER Périodiques Résumé : Alongside the rise in online qualitative research, fraudulent representation of research participants is increasing, and current strategies to address this issue within studies of non-neurodiverse samples may exclude autistic voices. Seeking to reduce fraudulent or "scammer" participation in our focus group study, and increase data validity and expenditure efficiency, we implemented strategies suggested in the literature and tested additional strategies. This research adds to the growing conversation around best practices for reducing scammers in autism research using online methods by (1) providing data evaluating the utility of existing strategies; (2) testing emerging strategies; and (3) discussing ethical dilemmas involved in addressing scammers in studies. We received over 200 expressions of interest and the established strategies suggested in the literature plus emerging strategies proved critical for mitigating the enrollment of scammers in focus groups. Protecting the integrity of data about human subjects from fraud is essential for rigorous autism research; trustworthy conclusions cannot be otherwise drawn from analysis. However, the strategies inherently require subjective decision-making that could systematically exclude participants with more limited or atypical communication and result in unfair subject selection. Procedures we recommend incur resources and are time consuming but are beneficial to ensure data integrity and inclusivity.Lay abstract Over the last decade, especially since the pandemic, more research has been happening online. Conducting research online can create opportunities to include autistic people across the world and make our studies more diverse. However, conducting research online had led to scammers, or people pretending to be autistic, participating in autism research studies. Strategies to stop scammers may accidentally leave out autistic people who have difficulty with processing time and open-ended questions. We tried out documented strategies to stop scammers from participating in autism research. We also tested new strategies to understand how helpful they are. Using these strategies, we suspected over 100 people who wanted to participate were scammers and did not invite them to participate. As researchers, we must ensure we stop scammers from participating in our studies. It?s important to highlight autistic voices and guarantee we get accurate results. However, the strategies to identify scammers may also leave out autistic people who have communication differences. This is unfair and could also make our results less reliable. The existing and new strategies to stop scammers take a lot of time and resources but they?re worth it to make sure our data are reliable, and include only autistic voices. En ligne : https://dx.doi.org/10.1177/13623613241298037 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=552 [article] Methods to reduce fraudulent participation and highlight autistic voices in research [Texte imprimé et/ou numérique] / Meghan E CAREY, Auteur ; Kiley J MCLEAN, Auteur ; Kyle CHVASTA, Auteur ; Ashley DE MARCHENA, Auteur ; Anne M ROUX, Auteur . - p.859-867. Langues : Anglais (eng) in Autism > 29-4 (April 2025) . - p.859-867 Mots-clés : autism spectrum disorders  bot  fraud  methods  online research  qualitative research  research participation  scam Index. décimale : PER Périodiques Résumé : Alongside the rise in online qualitative research, fraudulent representation of research participants is increasing, and current strategies to address this issue within studies of non-neurodiverse samples may exclude autistic voices. Seeking to reduce fraudulent or "scammer" participation in our focus group study, and increase data validity and expenditure efficiency, we implemented strategies suggested in the literature and tested additional strategies. This research adds to the growing conversation around best practices for reducing scammers in autism research using online methods by (1) providing data evaluating the utility of existing strategies; (2) testing emerging strategies; and (3) discussing ethical dilemmas involved in addressing scammers in studies. We received over 200 expressions of interest and the established strategies suggested in the literature plus emerging strategies proved critical for mitigating the enrollment of scammers in focus groups. Protecting the integrity of data about human subjects from fraud is essential for rigorous autism research; trustworthy conclusions cannot be otherwise drawn from analysis. However, the strategies inherently require subjective decision-making that could systematically exclude participants with more limited or atypical communication and result in unfair subject selection. Procedures we recommend incur resources and are time consuming but are beneficial to ensure data integrity and inclusivity.Lay abstract Over the last decade, especially since the pandemic, more research has been happening online. Conducting research online can create opportunities to include autistic people across the world and make our studies more diverse. However, conducting research online had led to scammers, or people pretending to be autistic, participating in autism research studies. Strategies to stop scammers may accidentally leave out autistic people who have difficulty with processing time and open-ended questions. We tried out documented strategies to stop scammers from participating in autism research. We also tested new strategies to understand how helpful they are. Using these strategies, we suspected over 100 people who wanted to participate were scammers and did not invite them to participate. As researchers, we must ensure we stop scammers from participating in our studies. It?s important to highlight autistic voices and guarantee we get accurate results. However, the strategies to identify scammers may also leave out autistic people who have communication differences. This is unfair and could also make our results less reliable. The existing and new strategies to stop scammers take a lot of time and resources but they?re worth it to make sure our data are reliable, and include only autistic voices. En ligne : https://dx.doi.org/10.1177/13623613241298037 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=552

Self-identification of autism: Why some autistic adults lack a clinical diagnosis and why this matters for inclusion / Katherine ARDELEANU in Autism, 29-9 (September 2025)  

Public ISBD [article]  inAutism > 29-9 (September 2025) . - p.2344-2355 Titre : Self-identification of autism: Why some autistic adults lack a clinical diagnosis and why this matters for inclusion Type de document : Texte imprimé et/ou numérique Auteurs : Katherine ARDELEANU, Auteur ; Hillary STEINBERG, Auteur ; Tamara GARFIELD, Auteur ; Samuelle VOLTAIRE, Auteur ; Lindsay SHEA, Auteur ; Maci BROWN, Auteur ; Kyle CHVASTA, Auteur ; Catherine Do TAN, Auteur Article en page(s) : p.2344-2355 Langues : Anglais (eng) Mots-clés : adults  autism spectrum disorders  diagnosis  policy  qualitative research  queer  transgender Index. décimale : PER Périodiques Résumé : Autism research and services have historically focused on individuals with a formal autism diagnosis. However, activists and self-advocates in the United States recognize that there are financial and clinical barriers impeding access to formal diagnostic evaluations for autism. Research also suggests that groups on the margins of autism, specifically those who are not White, young, or assigned male at birth, receive later diagnoses, if diagnosed at all. In particular, individuals who are autistic and LGTBQ+ are likely to not be afforded opportunities to be assessed and diagnosed. We conducted interviews with 65 queer and transgender autistic adults who either self-identified as autistic or had a formal autism diagnosis about their experiences with and perceptions of autism diagnosis. We found that participants derived a sense of meaning and affirmation from their autistic diagnosis and/or identity, faced significant barriers and deterrents to diagnosis, and experienced invalidation as both a barrier to and product of diagnosis. We argue that self-identified autistic individuals provide valuable context and data for many of the social processes and preferences reported by autistic people. We offer recommendations for research and services, specifically that many should not require formal autism diagnoses of participants.Lay abstract Most autism research and services focus on individuals with formal autism diagnoses. However, autism activists and self-advocates have raised awareness about the challenges that can prevent individuals from seeking or getting an autism diagnosis. We interviewed 65 queer and transgender adults who either self-identified as autistic without a formal diagnosis or who had a formal autism diagnosis. We found that participants made meaning of their autistic diagnosis and/or identity and found affirmation in this, faced significant barriers and deterrents to getting diagnosed, and experienced invalidation as both a barrier to and product of diagnosis. Due to the challenges that individuals face in getting a diagnosis, we recommend that researchers and advocates consider including self-identified autistic individuals in research and services. En ligne : https://dx.doi.org/10.1177/13623613241297222 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=566 [article] Self-identification of autism: Why some autistic adults lack a clinical diagnosis and why this matters for inclusion [Texte imprimé et/ou numérique] / Katherine ARDELEANU, Auteur ; Hillary STEINBERG, Auteur ; Tamara GARFIELD, Auteur ; Samuelle VOLTAIRE, Auteur ; Lindsay SHEA, Auteur ; Maci BROWN, Auteur ; Kyle CHVASTA, Auteur ; Catherine Do TAN, Auteur . - p.2344-2355. Langues : Anglais (eng) in Autism > 29-9 (September 2025) . - p.2344-2355 Mots-clés : adults  autism spectrum disorders  diagnosis  policy  qualitative research  queer  transgender Index. décimale : PER Périodiques Résumé : Autism research and services have historically focused on individuals with a formal autism diagnosis. However, activists and self-advocates in the United States recognize that there are financial and clinical barriers impeding access to formal diagnostic evaluations for autism. Research also suggests that groups on the margins of autism, specifically those who are not White, young, or assigned male at birth, receive later diagnoses, if diagnosed at all. In particular, individuals who are autistic and LGTBQ+ are likely to not be afforded opportunities to be assessed and diagnosed. We conducted interviews with 65 queer and transgender autistic adults who either self-identified as autistic or had a formal autism diagnosis about their experiences with and perceptions of autism diagnosis. We found that participants derived a sense of meaning and affirmation from their autistic diagnosis and/or identity, faced significant barriers and deterrents to diagnosis, and experienced invalidation as both a barrier to and product of diagnosis. We argue that self-identified autistic individuals provide valuable context and data for many of the social processes and preferences reported by autistic people. We offer recommendations for research and services, specifically that many should not require formal autism diagnoses of participants.Lay abstract Most autism research and services focus on individuals with formal autism diagnoses. However, autism activists and self-advocates have raised awareness about the challenges that can prevent individuals from seeking or getting an autism diagnosis. We interviewed 65 queer and transgender adults who either self-identified as autistic without a formal diagnosis or who had a formal autism diagnosis. We found that participants made meaning of their autistic diagnosis and/or identity and found affirmation in this, faced significant barriers and deterrents to getting diagnosed, and experienced invalidation as both a barrier to and product of diagnosis. Due to the challenges that individuals face in getting a diagnosis, we recommend that researchers and advocates consider including self-identified autistic individuals in research and services. En ligne : https://dx.doi.org/10.1177/13623613241297222 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=566

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