Assessing gender differences in autism spectrum disorder using the Gendered Autism Behavioral Scale (GABS): An exploratory study / Elaine B. CLARKE in Research in Autism Spectrum Disorders, 88 (October 2021)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 88 (October 2021) . - 101844 Titre : Assessing gender differences in autism spectrum disorder using the Gendered Autism Behavioral Scale (GABS): An exploratory study Type de document : Texte imprimé et/ou numérique Auteurs : Elaine B. CLARKE, Auteur ; Laura HULL, Auteur ; Rachel LOOMES, Auteur ; Carolyn E. B. MCCORMICK, Auteur ; Stephen J. SHEINKOPF, Auteur ; William MANDY, Auteur Article en page(s) : 101844 Langues : Anglais (eng) Mots-clés : Gender  Sex  Diagnosis  ADOS  Autism spectrum disorder Index. décimale : PER Périodiques Résumé : Introduction Gendered differences in autism spectrum disorder (hereafter, ‘autism’) symptomatology, may contribute to delayed diagnoses for autistic females. The aim of this study was to develop a coding system, the Gendered Autism Behavioral Scale (GABS), to identify and measure hypothesized components of non-traditional autism phenotypes. Methods Two independent cohorts of autistic individuals completed modules 3 and 4 of the Autism Diagnostic Observation Schedule (ADOS, 2nd edition). Video-recorded ADOS administrations were coded using the GABS, and separate coding teams analyzed each cohort. Cohort 1 from the United Kingdom consisted of 22 males and 22 females, aged 9–15 years. Cohort 2 from the United States consisted of 40 males and 20 females, aged 4–59 years. Results The coders achieved acceptable inter-rater reliability both within and across coding teams. In exploratory analyses, gender differences between codes were assessed within cohorts. Within Cohort 1, there were significant gender differences, of a moderate size, on several individual items as well as the Managing Emotions subscale and the Total GABS score. Within Cohort 2, significant gender differences were found for two individual items. Conclusions This study demonstrated the feasibility of the GABS across different sites. Validity tests resulted in partial replication of gender differences on the GABS. Preliminary evidence from the GABS suggests that valuable data on hypothesized non-traditional autism phenotypes could be extracted from widely employed assessments such as the ADOS. Future work could capitalize on the GABS’ utility for secondary data analysis to study gender differences in ASD in larger, adequately powered samples. En ligne : https://doi.org/10.1016/j.rasd.2021.101844 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=458 [article] Assessing gender differences in autism spectrum disorder using the Gendered Autism Behavioral Scale (GABS): An exploratory study [Texte imprimé et/ou numérique] / Elaine B. CLARKE, Auteur ; Laura HULL, Auteur ; Rachel LOOMES, Auteur ; Carolyn E. B. MCCORMICK, Auteur ; Stephen J. SHEINKOPF, Auteur ; William MANDY, Auteur . - 101844. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 88 (October 2021) . - 101844 Mots-clés : Gender  Sex  Diagnosis  ADOS  Autism spectrum disorder Index. décimale : PER Périodiques Résumé : Introduction Gendered differences in autism spectrum disorder (hereafter, ‘autism’) symptomatology, may contribute to delayed diagnoses for autistic females. The aim of this study was to develop a coding system, the Gendered Autism Behavioral Scale (GABS), to identify and measure hypothesized components of non-traditional autism phenotypes. Methods Two independent cohorts of autistic individuals completed modules 3 and 4 of the Autism Diagnostic Observation Schedule (ADOS, 2nd edition). Video-recorded ADOS administrations were coded using the GABS, and separate coding teams analyzed each cohort. Cohort 1 from the United Kingdom consisted of 22 males and 22 females, aged 9–15 years. Cohort 2 from the United States consisted of 40 males and 20 females, aged 4–59 years. Results The coders achieved acceptable inter-rater reliability both within and across coding teams. In exploratory analyses, gender differences between codes were assessed within cohorts. Within Cohort 1, there were significant gender differences, of a moderate size, on several individual items as well as the Managing Emotions subscale and the Total GABS score. Within Cohort 2, significant gender differences were found for two individual items. Conclusions This study demonstrated the feasibility of the GABS across different sites. Validity tests resulted in partial replication of gender differences on the GABS. Preliminary evidence from the GABS suggests that valuable data on hypothesized non-traditional autism phenotypes could be extracted from widely employed assessments such as the ADOS. Future work could capitalize on the GABS’ utility for secondary data analysis to study gender differences in ASD in larger, adequately powered samples. En ligne : https://doi.org/10.1016/j.rasd.2021.101844 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=458

Autism Heterogeneity in a Densely Sampled U.S. Population: Results From the First 1,000 Participants in the RI-CART Study / Carolyn E. B. MCCORMICK in Autism Research, 13-3 (March 2020)  

Public ISBD [article]  inAutism Research > 13-3 (March 2020) . - p.474-488 Titre : Autism Heterogeneity in a Densely Sampled U.S. Population: Results From the First 1,000 Participants in the RI-CART Study Type de document : Texte imprimé et/ou numérique Auteurs : Carolyn E. B. MCCORMICK, Auteur ; Brian C. KAVANAUGH, Auteur ; Danielle SIPSOCK, Auteur ; Giulia RIGHI, Auteur ; Lindsay M. OBERMAN, Auteur ; Daniel MORENO DE LUCA, Auteur ; Ece D. GAMSIZ UZUN, Auteur ; Carrie R. BEST, Auteur ; Beth A. JERSKEY, Auteur ; Joanne G. QUINN, Auteur ; Susan B. JEWEL, Auteur ; Pei-Chi WU, Auteur ; Rebecca L. MCLEAN, Auteur ; Todd P. LEVINE, Auteur ; Hasmik TOKADJIAN, Auteur ; Kayla A. PERKINS, Auteur ; Elaine B. CLARKE, Auteur ; Brittany DUNN, Auteur ; Alan H. GERBER, Auteur ; Elena J. TENENBAUM, Auteur ; Thomas F. ANDERS, Auteur Article en page(s) : p.474-488 Langues : Anglais (eng) Mots-clés : autism spectrum disorder  comorbidity  female autism  population study  registry Index. décimale : PER Périodiques Résumé : The objective of this study was to establish a large, densely sampled, U.S. population-based cohort of people with autism spectrum disorder (ASD). The Rhode Island Consortium for Autism Research and Treatment (RI-CART) represents a unique public-private-academic collaboration involving all major points of service for families in Rhode Island affected by ASD. Diagnosis was based on direct behavioral observation via the Autism Diagnostic Observation Schedule, Second Edition. For the first 1,000 participants, ages ranged from 21 months to 64 years. Using Geographic Information System and published prevalence rates, the overall cohort is estimated to represent between 20% and 49% of pediatric age persons in Rhode Island with ASD, with demographics representative of U.S. Census. We observed a high rate of co-occurring medical and psychiatric conditions in affected individuals. Among the most prominent findings of immediate clinical importance, we found that females received a first diagnosis of ASD at a later age than males, potentially due to more advanced language abilities in females with ASD. In summary, this is the first analysis of a large, population-based U.S. cohort with ASD. Given the depth of sampling, the RI-CART study reflects an important new resource for studying ASD in a representative U.S. population. Psychiatric and medical comorbidities in ASD constitute a substantial burden and warrant adequate attention as part of overall treatment. Our study also suggests that new strategies for earlier diagnosis of ASD in females may be warranted. Autism Res 2020, 13: 474-488. (c) 2020 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: The Rhode Island Consortium for Autism Research and Treatment (RI-CART) represents a unique public-private-academic collaboration involving all major points of service for families in Rhode Island affected by autism spectrum disorder (ASD). In this article, we provide results from the first 1,000 participants, estimated to represent >20% of affected families in the state. Importantly, we find a later age at first diagnosis of ASD in females, which potentially calls attention to the need for improved early diagnosis in girls. Also, we report a high rate of co-occurring medical and psychiatric conditions in affected individuals. En ligne : http://dx.doi.org/10.1002/aur.2261 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=421 [article] Autism Heterogeneity in a Densely Sampled U.S. Population: Results From the First 1,000 Participants in the RI-CART Study [Texte imprimé et/ou numérique] / Carolyn E. B. MCCORMICK, Auteur ; Brian C. KAVANAUGH, Auteur ; Danielle SIPSOCK, Auteur ; Giulia RIGHI, Auteur ; Lindsay M. OBERMAN, Auteur ; Daniel MORENO DE LUCA, Auteur ; Ece D. GAMSIZ UZUN, Auteur ; Carrie R. BEST, Auteur ; Beth A. JERSKEY, Auteur ; Joanne G. QUINN, Auteur ; Susan B. JEWEL, Auteur ; Pei-Chi WU, Auteur ; Rebecca L. MCLEAN, Auteur ; Todd P. LEVINE, Auteur ; Hasmik TOKADJIAN, Auteur ; Kayla A. PERKINS, Auteur ; Elaine B. CLARKE, Auteur ; Brittany DUNN, Auteur ; Alan H. GERBER, Auteur ; Elena J. TENENBAUM, Auteur ; Thomas F. ANDERS, Auteur . - p.474-488. Langues : Anglais (eng) in Autism Research > 13-3 (March 2020) . - p.474-488 Mots-clés : autism spectrum disorder  comorbidity  female autism  population study  registry Index. décimale : PER Périodiques Résumé : The objective of this study was to establish a large, densely sampled, U.S. population-based cohort of people with autism spectrum disorder (ASD). The Rhode Island Consortium for Autism Research and Treatment (RI-CART) represents a unique public-private-academic collaboration involving all major points of service for families in Rhode Island affected by ASD. Diagnosis was based on direct behavioral observation via the Autism Diagnostic Observation Schedule, Second Edition. For the first 1,000 participants, ages ranged from 21 months to 64 years. Using Geographic Information System and published prevalence rates, the overall cohort is estimated to represent between 20% and 49% of pediatric age persons in Rhode Island with ASD, with demographics representative of U.S. Census. We observed a high rate of co-occurring medical and psychiatric conditions in affected individuals. Among the most prominent findings of immediate clinical importance, we found that females received a first diagnosis of ASD at a later age than males, potentially due to more advanced language abilities in females with ASD. In summary, this is the first analysis of a large, population-based U.S. cohort with ASD. Given the depth of sampling, the RI-CART study reflects an important new resource for studying ASD in a representative U.S. population. Psychiatric and medical comorbidities in ASD constitute a substantial burden and warrant adequate attention as part of overall treatment. Our study also suggests that new strategies for earlier diagnosis of ASD in females may be warranted. Autism Res 2020, 13: 474-488. (c) 2020 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: The Rhode Island Consortium for Autism Research and Treatment (RI-CART) represents a unique public-private-academic collaboration involving all major points of service for families in Rhode Island affected by autism spectrum disorder (ASD). In this article, we provide results from the first 1,000 participants, estimated to represent >20% of affected families in the state. Importantly, we find a later age at first diagnosis of ASD in females, which potentially calls attention to the need for improved early diagnosis in girls. Also, we report a high rate of co-occurring medical and psychiatric conditions in affected individuals. En ligne : http://dx.doi.org/10.1002/aur.2261 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=421

Family experiences with supplemental social security income and legal guardianship for autistic adults: A mixed-methods study / Emily F. FERGUSON in Research in Autism Spectrum Disorders, 119 (January 2025)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 119 (January 2025) . - p.102522 Titre : Family experiences with supplemental social security income and legal guardianship for autistic adults: A mixed-methods study Type de document : Texte imprimé et/ou numérique Auteurs : Emily F. FERGUSON, Auteur ; Elaine B. CLARKE, Auteur ; Noa SCHISTERMAN, Auteur ; Catherine LORD, Auteur Article en page(s) : p.102522 Langues : Anglais (eng) Mots-clés : Social services  Transition to adulthood  Legal issues  Community participation  Supplemental Social Security Income  Guardianship  Autism Spectrum Disorder Index. décimale : PER Périodiques Résumé : Background Family interactions with the Supplemental Social Security Income (SSI) program and the decision to pursue legal guardianship are poorly understood in services research for autistic adults. Methods We conducted a mixed-methods study and incorporated quantitative survey data from 122 autistic adults in an existing longitudinal cohort with qualitative interviews with 12 autistic adults and/or legal guardians. We explored sociodemographic, developmental, and behavioral features associated with the likelihood of having SSI and a legal guardian at 25 years old. Spoken interviews were transcribed verbatim, and interviews were analyzed using a rapid qualitative analytic approach. Results There were quantitative differences in whether families were able to obtain SSI and guardianship based on intelligence quotient (IQ) scores, adaptive behavior, and autistic characteristics, but not by race, ethnicity, or maternal education. Qualitative data analysis revealed six themes that highlighted the challenges associated with obtaining and maintaining SSI, along with the complex, nuanced decisions associated with legal guardianship. Families noted many challenges in navigating these procedures and some potential benefits for each unique circumstance. Conclusions These findings offer new perspectives on experiences associated with pursuing SSI benefits and legal guardianship for autistic adults, including similarities and key differences in these procedures. Findings also provide suggestions for future research to improve coordination and supports for families throughout adulthood. En ligne : https://dx.doi.org/10.1016/j.rasd.2024.102522 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=545 [article] Family experiences with supplemental social security income and legal guardianship for autistic adults: A mixed-methods study [Texte imprimé et/ou numérique] / Emily F. FERGUSON, Auteur ; Elaine B. CLARKE, Auteur ; Noa SCHISTERMAN, Auteur ; Catherine LORD, Auteur . - p.102522. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 119 (January 2025) . - p.102522 Mots-clés : Social services  Transition to adulthood  Legal issues  Community participation  Supplemental Social Security Income  Guardianship  Autism Spectrum Disorder Index. décimale : PER Périodiques Résumé : Background Family interactions with the Supplemental Social Security Income (SSI) program and the decision to pursue legal guardianship are poorly understood in services research for autistic adults. Methods We conducted a mixed-methods study and incorporated quantitative survey data from 122 autistic adults in an existing longitudinal cohort with qualitative interviews with 12 autistic adults and/or legal guardians. We explored sociodemographic, developmental, and behavioral features associated with the likelihood of having SSI and a legal guardian at 25 years old. Spoken interviews were transcribed verbatim, and interviews were analyzed using a rapid qualitative analytic approach. Results There were quantitative differences in whether families were able to obtain SSI and guardianship based on intelligence quotient (IQ) scores, adaptive behavior, and autistic characteristics, but not by race, ethnicity, or maternal education. Qualitative data analysis revealed six themes that highlighted the challenges associated with obtaining and maintaining SSI, along with the complex, nuanced decisions associated with legal guardianship. Families noted many challenges in navigating these procedures and some potential benefits for each unique circumstance. Conclusions These findings offer new perspectives on experiences associated with pursuing SSI benefits and legal guardianship for autistic adults, including similarities and key differences in these procedures. Findings also provide suggestions for future research to improve coordination and supports for families throughout adulthood. En ligne : https://dx.doi.org/10.1016/j.rasd.2024.102522 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=545

Social competence as a predictor of adult outcomes in autism spectrum disorder / Elaine B. CLARKE in Development and Psychopathology, 36-3 (August 2024)  

Public ISBD [article]  inDevelopment and Psychopathology > 36-3 (August 2024) . - p.1442-1457 Titre : Social competence as a predictor of adult outcomes in autism spectrum disorder Type de document : Texte imprimé et/ou numérique Auteurs : Elaine B. CLARKE, Auteur ; Catherine LORD, Auteur Article en page(s) : p.1442-1457 Langues : Anglais (eng) Mots-clés : adolescence  adult outcomes  autism spectrum disorder  early adulthood  social competence Index. décimale : PER Périodiques Résumé : There is a wealth of literature characterizing social difficulties in autism spectrum disorder (ASD). However, little work has replicated longitudinal findings from typical development that adolescent social competence predicts positive adult outcomes in ASD. The current study examined social competence trajectories from 2 to 26 and the utility of three social competence measures collected in adolescence in predicting work, residential status, friendship, and romantic outcomes in a longitudinal cohort (n = 253) of ASD. Using group-based trajectory modeling, we identified two patterns of social competence development: a low trajectory characterized by slow linear gains throughout childhood and plateauing in adulthood, and a high trajectory characterized by steeper linear gains in childhood followed by decline in adulthood. Regression models indicated one social competence measure, Vineland Social-AE scores, significantly predicted employment, residential status, and friendships in adulthood. One other social competence measure, SSQ total scores, also significantly predicted friendship in adulthood. Only nonverbal IQ at 9 predicted the likelihood of having ever had a romantic relationship. These findings highlight the role of social competence in both atypical and typical development and suggest the social impairments associated with ASD do not necessarily impact all realms of social functioning equally. En ligne : https://dx.doi.org/10.1017/S0954579423000664 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=539 [article] Social competence as a predictor of adult outcomes in autism spectrum disorder [Texte imprimé et/ou numérique] / Elaine B. CLARKE, Auteur ; Catherine LORD, Auteur . - p.1442-1457. Langues : Anglais (eng) in Development and Psychopathology > 36-3 (August 2024) . - p.1442-1457 Mots-clés : adolescence  adult outcomes  autism spectrum disorder  early adulthood  social competence Index. décimale : PER Périodiques Résumé : There is a wealth of literature characterizing social difficulties in autism spectrum disorder (ASD). However, little work has replicated longitudinal findings from typical development that adolescent social competence predicts positive adult outcomes in ASD. The current study examined social competence trajectories from 2 to 26 and the utility of three social competence measures collected in adolescence in predicting work, residential status, friendship, and romantic outcomes in a longitudinal cohort (n = 253) of ASD. Using group-based trajectory modeling, we identified two patterns of social competence development: a low trajectory characterized by slow linear gains throughout childhood and plateauing in adulthood, and a high trajectory characterized by steeper linear gains in childhood followed by decline in adulthood. Regression models indicated one social competence measure, Vineland Social-AE scores, significantly predicted employment, residential status, and friendships in adulthood. One other social competence measure, SSQ total scores, also significantly predicted friendship in adulthood. Only nonverbal IQ at 9 predicted the likelihood of having ever had a romantic relationship. These findings highlight the role of social competence in both atypical and typical development and suggest the social impairments associated with ASD do not necessarily impact all realms of social functioning equally. En ligne : https://dx.doi.org/10.1017/S0954579423000664 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=539

Work and well-being: Vocational activity trajectories in young adults with autism spectrum disorder / Elaine B. CLARKE in Autism Research, 14-12 (December 2021)  

Public ISBD [article]  inAutism Research > 14-12 (December 2021) . - p.2613-2624 Titre : Work and well-being: Vocational activity trajectories in young adults with autism spectrum disorder Type de document : Texte imprimé et/ou numérique Auteurs : Elaine B. CLARKE, Auteur ; K. STERRETT, Auteur ; C. LORD, Auteur Article en page(s) : p.2613-2624 Langues : Anglais (eng) Mots-clés : Adolescent  Adult  Autism Spectrum Disorder  Employment  Happiness  Humans  Longitudinal Studies  Young Adult  adults  aging/ASD in adults  developmental psychology  longitudinal data analysis  phenotype Index. décimale : PER Périodiques Résumé : Young adults with autism spectrum disorder (ASD) experience limited social connectedness, difficulty living independently, and other poor outcomes at high rates. Vocational activities, including employment and postsecondary education, are associated with increased positive outcomes and subjective well-being in typical adults. This study identified vocational activity trajectory groups in adults with ASD, examined change in these trajectories from ages 18 to 28, and compared levels of parent- and self-report subjective well-being across trajectory groups. One hundred fifty-one adults with ASD were drawn from an ongoing longitudinal study. Data on psychosocial outcomes and vocational activities were compiled from parent-report demographic forms. Vocational activities were scored using the vocational index (VDI). There was no significant effect of age on the slope of vocational trajectories (p =?0.787). Participants in the Independent Activities group had significantly higher parent-report happiness factor scores than participants in the No Activities group (F [3, 107] = 3.56, p =?0.017) and significantly higher self-report happiness factor scores than participants in the Volunteer Activities group (F [2, 35] = 6.46, p =?0.004). The Independent Activities group was also significantly more likely to have at least one social contact (X(2) [3, 118] = 10.54, p =?0.014), however, there was no difference in trajectories groups in the likelihood of living independently (X(2) [3, 120] = 1.71, p =?0.634). The results of this study indicate vocational activities in young adults with ASD are stable across time. In the current sample, participation in independent vocational activities was associated with increased levels of subjective well-being. En ligne : http://dx.doi.org/10.1002/aur.2606 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=450 [article] Work and well-being: Vocational activity trajectories in young adults with autism spectrum disorder [Texte imprimé et/ou numérique] / Elaine B. CLARKE, Auteur ; K. STERRETT, Auteur ; C. LORD, Auteur . - p.2613-2624. Langues : Anglais (eng) in Autism Research > 14-12 (December 2021) . - p.2613-2624 Mots-clés : Adolescent  Adult  Autism Spectrum Disorder  Employment  Happiness  Humans  Longitudinal Studies  Young Adult  adults  aging/ASD in adults  developmental psychology  longitudinal data analysis  phenotype Index. décimale : PER Périodiques Résumé : Young adults with autism spectrum disorder (ASD) experience limited social connectedness, difficulty living independently, and other poor outcomes at high rates. Vocational activities, including employment and postsecondary education, are associated with increased positive outcomes and subjective well-being in typical adults. This study identified vocational activity trajectory groups in adults with ASD, examined change in these trajectories from ages 18 to 28, and compared levels of parent- and self-report subjective well-being across trajectory groups. One hundred fifty-one adults with ASD were drawn from an ongoing longitudinal study. Data on psychosocial outcomes and vocational activities were compiled from parent-report demographic forms. Vocational activities were scored using the vocational index (VDI). There was no significant effect of age on the slope of vocational trajectories (p =?0.787). Participants in the Independent Activities group had significantly higher parent-report happiness factor scores than participants in the No Activities group (F [3, 107] = 3.56, p =?0.017) and significantly higher self-report happiness factor scores than participants in the Volunteer Activities group (F [2, 35] = 6.46, p =?0.004). The Independent Activities group was also significantly more likely to have at least one social contact (X(2) [3, 118] = 10.54, p =?0.014), however, there was no difference in trajectories groups in the likelihood of living independently (X(2) [3, 120] = 1.71, p =?0.634). The results of this study indicate vocational activities in young adults with ASD are stable across time. In the current sample, participation in independent vocational activities was associated with increased levels of subjective well-being. En ligne : http://dx.doi.org/10.1002/aur.2606 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=450

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