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

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

Short report on navigating access to care for Medicaid-enrolled autistic youth and young adults: Examining accrual of intellectual disability diagnoses in adolescence / Meghan E. Carey in Autism, 28-3 (March 2024)  

Public ISBD [article]  inAutism > 28-3 (March 2024) . - p.780-785 Titre : Short report on navigating access to care for Medicaid-enrolled autistic youth and young adults: Examining accrual of intellectual disability diagnoses in adolescence Type de document : Texte imprimé et/ou numérique Auteurs : Meghan E. Carey, Auteur ; Katherine ARDELEANU, Auteur ; Steven C. MARCUS, Auteur ; Sha TAO, Auteur ; David MANDELL, Auteur ; Andrew J. EPSTEIN, Auteur ; Lindsay L. SHEA, Auteur Article en page(s) : p.780-785 Langues : Anglais (eng) Mots-clés : adolescents  autism spectrum disorders  health services  policy Index. décimale : PER Périodiques Résumé : Medicaid is a major insurer of autistic people. However, during the transition to adulthood, autistic individuals are more likely than people with intellectual disability to lose their Medicaid benefits. Individuals with intellectual disability may have greater success maintaining Medicaid coverage during this time because most states provide coverage to individuals with intellectual disability throughout adulthood, which is not the case for autism. Using national Medicaid data from 2008 to 2016, we estimated the probability of intellectual disability diagnosis accrual among autistic Medicaid beneficiaries. Medicaid beneficiaries ages 8 to 25 with 1+?inpatient or 2+?outpatient autism spectrum disorder claims, but no intellectual disability claim, in a 12-month eligibility period were included. We used a person-month discrete-time proportional hazards model. Disruptions in Medicaid coverage were operationalized as 2+?consecutive months of no coverage before coverage resumed (yes/no). One in five autistic individuals ages 8-25 accrued an intellectual disability diagnosis. The probability of accruing an intellectual disability diagnosis was higher among autistic individuals who had disruptions in Medicaid coverage compared to those without disruptions, and peaked at age 21 (during the transition to adulthood). Expanding Medicaid to cover autistic people of all ages could decrease the need for intellectual disability diagnosis accrual and improve health outcomes for autistic adults. Lay abstract What is known? In most states, Medicaid waivers provide individuals with an intellectual disability diagnosis generous healthcare coverage throughout adulthood. By comparison, fewer Medicaid programs are available for autistic individuals, and they are more likely to experience disruptions, or gaps, in Medicaid coverage and subsequently not re-enroll. What this paper adds? One in five autistic individuals with Medicaid coverage between ages 8 and 25 accrued a new intellectual disability diagnosis. The probability of a new intellectual disability diagnosis was higher among those who had previous disruptions in Medicaid coverage. Implications for research and policy. Expanding Medicaid to cover autistic people of all ages could decrease the need for intellectual disability diagnosis accrual. Input from autistic individuals and their families regarding their health insurance access and healthcare experiences is critically important to understanding next steps for research. En ligne : https://dx.doi.org/10.1177/13623613231177559 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=523 [article] Short report on navigating access to care for Medicaid-enrolled autistic youth and young adults: Examining accrual of intellectual disability diagnoses in adolescence [Texte imprimé et/ou numérique] / Meghan E. Carey, Auteur ; Katherine ARDELEANU, Auteur ; Steven C. MARCUS, Auteur ; Sha TAO, Auteur ; David MANDELL, Auteur ; Andrew J. EPSTEIN, Auteur ; Lindsay L. SHEA, Auteur . - p.780-785. Langues : Anglais (eng) in Autism > 28-3 (March 2024) . - p.780-785 Mots-clés : adolescents  autism spectrum disorders  health services  policy Index. décimale : PER Périodiques Résumé : Medicaid is a major insurer of autistic people. However, during the transition to adulthood, autistic individuals are more likely than people with intellectual disability to lose their Medicaid benefits. Individuals with intellectual disability may have greater success maintaining Medicaid coverage during this time because most states provide coverage to individuals with intellectual disability throughout adulthood, which is not the case for autism. Using national Medicaid data from 2008 to 2016, we estimated the probability of intellectual disability diagnosis accrual among autistic Medicaid beneficiaries. Medicaid beneficiaries ages 8 to 25 with 1+?inpatient or 2+?outpatient autism spectrum disorder claims, but no intellectual disability claim, in a 12-month eligibility period were included. We used a person-month discrete-time proportional hazards model. Disruptions in Medicaid coverage were operationalized as 2+?consecutive months of no coverage before coverage resumed (yes/no). One in five autistic individuals ages 8-25 accrued an intellectual disability diagnosis. The probability of accruing an intellectual disability diagnosis was higher among autistic individuals who had disruptions in Medicaid coverage compared to those without disruptions, and peaked at age 21 (during the transition to adulthood). Expanding Medicaid to cover autistic people of all ages could decrease the need for intellectual disability diagnosis accrual and improve health outcomes for autistic adults. Lay abstract What is known? In most states, Medicaid waivers provide individuals with an intellectual disability diagnosis generous healthcare coverage throughout adulthood. By comparison, fewer Medicaid programs are available for autistic individuals, and they are more likely to experience disruptions, or gaps, in Medicaid coverage and subsequently not re-enroll. What this paper adds? One in five autistic individuals with Medicaid coverage between ages 8 and 25 accrued a new intellectual disability diagnosis. The probability of a new intellectual disability diagnosis was higher among those who had previous disruptions in Medicaid coverage. Implications for research and policy. Expanding Medicaid to cover autistic people of all ages could decrease the need for intellectual disability diagnosis accrual. Input from autistic individuals and their families regarding their health insurance access and healthcare experiences is critically important to understanding next steps for research. En ligne : https://dx.doi.org/10.1177/13623613231177559 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=523

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