Biases, Barriers, and Possible Solutions: Steps Towards Addressing Autism Researchers Under-Engagement with Racially, Ethnically, and Socioeconomically Diverse Communities / Melissa MAYE in Journal of Autism and Developmental Disorders, 52-9 (September 2022)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 52-9 (September 2022) . - p.4206-4211 Titre : Biases, Barriers, and Possible Solutions: Steps Towards Addressing Autism Researchers Under-Engagement with Racially, Ethnically, and Socioeconomically Diverse Communities Type de document : texte imprimé Auteurs : Melissa MAYE, Auteur ; Brian A. BOYD, Auteur ; Frances MARTINEZ-PEDRAZA, Auteur ; Alycia K. HALLADAY, Auteur ; Audrey THURM, Auteur ; David S. MANDELL, Auteur Article en page(s) : p.4206-4211 Langues : Anglais (eng) Mots-clés : Autism Spectrum Disorder  Autistic Disorder  Bias  Cultural Competency  Healthcare Disparities  Humans  Autism  Engagement  Ethnicity  Participation  Race  Socioeconomic status  to disclose. Index. décimale : PER Périodiques Résumé : Autistic individuals who are also people of color or from lower socioeconomic strata are historically underrepresented in research. Lack of representation in autism research has contributed to health and healthcare disparities. Reducing these disparities will require culturally competent research that is relevant to under-resourced communities as well as collecting large nationally representative samples, or samples in which traditionally disenfranchised groups are over-represented. To achieve these goals, a diverse group of culturally competent researchers must partner with and gain the trust of communities to identify and eliminate barriers to participating in research. We suggest community-academic partnerships as one promising approach that results in high-quality research built on cultural competency, respect, and shared decision making. En ligne : http://dx.doi.org/10.1007/s10803-021-05250-y Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=486 [article] Biases, Barriers, and Possible Solutions: Steps Towards Addressing Autism Researchers Under-Engagement with Racially, Ethnically, and Socioeconomically Diverse Communities [texte imprimé] / Melissa MAYE, Auteur ; Brian A. BOYD, Auteur ; Frances MARTINEZ-PEDRAZA, Auteur ; Alycia K. HALLADAY, Auteur ; Audrey THURM, Auteur ; David S. MANDELL, Auteur . - p.4206-4211. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 52-9 (September 2022) . - p.4206-4211 Mots-clés : Autism Spectrum Disorder  Autistic Disorder  Bias  Cultural Competency  Healthcare Disparities  Humans  Autism  Engagement  Ethnicity  Participation  Race  Socioeconomic status  to disclose. Index. décimale : PER Périodiques Résumé : Autistic individuals who are also people of color or from lower socioeconomic strata are historically underrepresented in research. Lack of representation in autism research has contributed to health and healthcare disparities. Reducing these disparities will require culturally competent research that is relevant to under-resourced communities as well as collecting large nationally representative samples, or samples in which traditionally disenfranchised groups are over-represented. To achieve these goals, a diverse group of culturally competent researchers must partner with and gain the trust of communities to identify and eliminate barriers to participating in research. We suggest community-academic partnerships as one promising approach that results in high-quality research built on cultural competency, respect, and shared decision making. En ligne : http://dx.doi.org/10.1007/s10803-021-05250-y Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=486

Expanding Research on Contextual Factors in Autism Research: What Took Us So Long? / Teresa BENNETT ; Leann S. DAWALT ; Maureen S. DURKIN ; Gordon FORBES ; Patricia HOWLIN ; Catherine LORD ; Anat ZAIDMAN-ZAIT ; Lonnie ZWAIGENBAUM ; Vanessa H. BAL ; Somer L. BISHOP ; Chung-Hsin CHIANG ; Adriana DIMARTINO ; Christine M. FREITAG ; Stelios GEORGIADES ; Matthew J. HOLLOCKS ; Meng-Chuan LAI ; Matthew J. MAENNER ; Patrick S. POWELL ; Julie Lounds TAYLOR ; Alycia K. HALLADAY in Autism Research, 18-4 (April 2025)  

Public ISBD [article]  inAutism Research > 18-4 (April 2025) . - p.710-716 Titre : Expanding Research on Contextual Factors in Autism Research: What Took Us So Long? Type de document : texte imprimé Auteurs : Teresa BENNETT, Auteur ; Leann S. DAWALT, Auteur ; Maureen S. DURKIN, Auteur ; Gordon FORBES, Auteur ; Patricia HOWLIN, Auteur ; Catherine LORD, Auteur ; Anat ZAIDMAN-ZAIT, Auteur ; Lonnie ZWAIGENBAUM, Auteur ; Vanessa H. BAL, Auteur ; Somer L. BISHOP, Auteur ; Chung-Hsin CHIANG, Auteur ; Adriana DIMARTINO, Auteur ; Christine M. FREITAG, Auteur ; Stelios GEORGIADES, Auteur ; Matthew J. HOLLOCKS, Auteur ; Meng-Chuan LAI, Auteur ; Matthew J. MAENNER, Auteur ; Patrick S. POWELL, Auteur ; Julie Lounds TAYLOR, Auteur ; Alycia K. HALLADAY, Auteur Article en page(s) : p.710-716 Langues : Anglais (eng) Mots-clés : autism  behavior  contextual  longitudinal  outcomes  research Index. décimale : PER Périodiques Résumé : ABSTRACT Although autism is a childhood-onset neurodevelopmental disorder, its features change across the life course due to a combination of individual and contextual influences. However, the influence of contextual factors on development during childhood and beyond is less frequently studied than individual factors such as genetic variants that increase autism risk, IQ, language, and autistic features. Potentially important contexts include the family environment and socioeconomic status, social networks, school, work, services, neighborhood characteristics, environmental events, and sociocultural factors. Here, we articulate the benefit of studying contextual factors, and we offer selected examples of published longitudinal autism studies that have focused on how individuals develop within context. Expanding the autism research agenda to include the broader context in which autism emerges and changes across the life course can enhance understanding of how contexts influence the heterogeneity of autism, support strengths and resilience, or amplify disabilities. We describe challenges and opportunities for future research on contextual influences and provide a list of digital resources that can be integrated into autism data sets. It is important to conceptualize contextual influences on autism development as main exposures, not only as descriptive variables or factors needing statistical control. En ligne : https://doi.org/10.1002/aur.3312 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=554 [article] Expanding Research on Contextual Factors in Autism Research: What Took Us So Long? [texte imprimé] / Teresa BENNETT, Auteur ; Leann S. DAWALT, Auteur ; Maureen S. DURKIN, Auteur ; Gordon FORBES, Auteur ; Patricia HOWLIN, Auteur ; Catherine LORD, Auteur ; Anat ZAIDMAN-ZAIT, Auteur ; Lonnie ZWAIGENBAUM, Auteur ; Vanessa H. BAL, Auteur ; Somer L. BISHOP, Auteur ; Chung-Hsin CHIANG, Auteur ; Adriana DIMARTINO, Auteur ; Christine M. FREITAG, Auteur ; Stelios GEORGIADES, Auteur ; Matthew J. HOLLOCKS, Auteur ; Meng-Chuan LAI, Auteur ; Matthew J. MAENNER, Auteur ; Patrick S. POWELL, Auteur ; Julie Lounds TAYLOR, Auteur ; Alycia K. HALLADAY, Auteur . - p.710-716. Langues : Anglais (eng) in Autism Research > 18-4 (April 2025) . - p.710-716 Mots-clés : autism  behavior  contextual  longitudinal  outcomes  research Index. décimale : PER Périodiques Résumé : ABSTRACT Although autism is a childhood-onset neurodevelopmental disorder, its features change across the life course due to a combination of individual and contextual influences. However, the influence of contextual factors on development during childhood and beyond is less frequently studied than individual factors such as genetic variants that increase autism risk, IQ, language, and autistic features. Potentially important contexts include the family environment and socioeconomic status, social networks, school, work, services, neighborhood characteristics, environmental events, and sociocultural factors. Here, we articulate the benefit of studying contextual factors, and we offer selected examples of published longitudinal autism studies that have focused on how individuals develop within context. Expanding the autism research agenda to include the broader context in which autism emerges and changes across the life course can enhance understanding of how contexts influence the heterogeneity of autism, support strengths and resilience, or amplify disabilities. We describe challenges and opportunities for future research on contextual influences and provide a list of digital resources that can be integrated into autism data sets. It is important to conceptualize contextual influences on autism development as main exposures, not only as descriptive variables or factors needing statistical control. En ligne : https://doi.org/10.1002/aur.3312 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=554

Factors impacting employment for people with autism spectrum disorder: A scoping review / Melissa SCOTT in Autism, 23-4 (May 2019)  

Public ISBD [article]  inAutism > 23-4 (May 2019) . - p.869-901 Titre : Factors impacting employment for people with autism spectrum disorder: A scoping review Type de document : texte imprimé Auteurs : Melissa SCOTT, Auteur ; Benjamin MILBOURN, Auteur ; Marita FALKMER, Auteur ; Melissa H. BLACK, Auteur ; Sven BÖLTE, Auteur ; Alycia K. HALLADAY, Auteur ; Matthew D. LERNER, Auteur ; Julie LOUNDS TAYLOR, Auteur ; Sonya GIRDLER, Auteur Article en page(s) : p.869-901 Langues : Anglais (eng) Mots-clés : adult  intervention  strengths-based  vocational rehabilitation  work environment Index. décimale : PER Périodiques Résumé : The aim of this study is to holistically synthesise the extent and range of literature relating to the employment of individuals with autism spectrum disorder. Database searches of Medline, CINAHL, PsychINFO, Scopus, ERIC, Web of Science and EMBASE were conducted. Studies describing adults with autism spectrum disorder employed in competitive, supported or sheltered employment were included. Content analysis was used to identify the strengths and abilities in the workplace of employees with autism spectrum disorder. Finally, meaningful concepts relating to employment interventions were extracted and linked to the International Classification of Functioning, Disability and Health Core Sets for autism spectrum disorder. The search identified 134 studies for inclusion with methodological quality ranging from limited to strong. Of these studies, only 36 evaluated employment interventions that were coded and linked to the International Classification of Functioning, Disability and Health, primarily focusing on modifying autism spectrum disorder characteristics for improved job performance, with little consideration of the impact of contextual factors on work participation. The International Classification of Functioning, Disability and Health Core Sets for autism spectrum disorder are a useful tool in holistically examining the employment literature for individuals with autism spectrum disorder. This review highlighted the key role that environmental factors play as barriers and facilitators in the employment of people with autism spectrum disorder and the critical need for interventions which target contextual factors if employment outcomes are to be improved. En ligne : http://dx.doi.org/10.1177/1362361318787789 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=397 [article] Factors impacting employment for people with autism spectrum disorder: A scoping review [texte imprimé] / Melissa SCOTT, Auteur ; Benjamin MILBOURN, Auteur ; Marita FALKMER, Auteur ; Melissa H. BLACK, Auteur ; Sven BÖLTE, Auteur ; Alycia K. HALLADAY, Auteur ; Matthew D. LERNER, Auteur ; Julie LOUNDS TAYLOR, Auteur ; Sonya GIRDLER, Auteur . - p.869-901. Langues : Anglais (eng) in Autism > 23-4 (May 2019) . - p.869-901 Mots-clés : adult  intervention  strengths-based  vocational rehabilitation  work environment Index. décimale : PER Périodiques Résumé : The aim of this study is to holistically synthesise the extent and range of literature relating to the employment of individuals with autism spectrum disorder. Database searches of Medline, CINAHL, PsychINFO, Scopus, ERIC, Web of Science and EMBASE were conducted. Studies describing adults with autism spectrum disorder employed in competitive, supported or sheltered employment were included. Content analysis was used to identify the strengths and abilities in the workplace of employees with autism spectrum disorder. Finally, meaningful concepts relating to employment interventions were extracted and linked to the International Classification of Functioning, Disability and Health Core Sets for autism spectrum disorder. The search identified 134 studies for inclusion with methodological quality ranging from limited to strong. Of these studies, only 36 evaluated employment interventions that were coded and linked to the International Classification of Functioning, Disability and Health, primarily focusing on modifying autism spectrum disorder characteristics for improved job performance, with little consideration of the impact of contextual factors on work participation. The International Classification of Functioning, Disability and Health Core Sets for autism spectrum disorder are a useful tool in holistically examining the employment literature for individuals with autism spectrum disorder. This review highlighted the key role that environmental factors play as barriers and facilitators in the employment of people with autism spectrum disorder and the critical need for interventions which target contextual factors if employment outcomes are to be improved. En ligne : http://dx.doi.org/10.1177/1362361318787789 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=397

A full semantic toolbox is essential for autism research and practice to thrive / Alison SINGER in Autism Research, 16-3 (March 2023)  

Public ISBD [article]  inAutism Research > 16-3 (March 2023) . - p.497-501 Titre : A full semantic toolbox is essential for autism research and practice to thrive Type de document : texte imprimé Auteurs : Alison SINGER, Auteur ; Amy LUTZ, Auteur ; Jill ESCHER, Auteur ; Alycia K. HALLADAY, Auteur Article en page(s) : p.497-501 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Abstract Individuals diagnosed with autism spectrum disorder (ASD) present with a highly diverse set of challenges, disabilities, impairments and strengths. Recently, it has been suggested that researchers and practitioners avoid using certain words to describe the difficulties and impairments experienced by individuals with ASD to reduce stigma. The proposed limitations on terminology were developed by only a subset of the autism community, and the recommendations are already causing negative consequences that may be harmful to future scientific and clinical endeavors and, ultimately, to people with ASD. No one should have the power to censor language to exclude the observable realities of autism. Scientists and clinicians must be able to use any scientifically accurate terms necessary to describe the wide range of autistic people they study and support, without fear of censure or retribution. En ligne : https://doi.org/10.1002/aur.2876 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=498 [article] A full semantic toolbox is essential for autism research and practice to thrive [texte imprimé] / Alison SINGER, Auteur ; Amy LUTZ, Auteur ; Jill ESCHER, Auteur ; Alycia K. HALLADAY, Auteur . - p.497-501. Langues : Anglais (eng) in Autism Research > 16-3 (March 2023) . - p.497-501 Index. décimale : PER Périodiques Résumé : Abstract Individuals diagnosed with autism spectrum disorder (ASD) present with a highly diverse set of challenges, disabilities, impairments and strengths. Recently, it has been suggested that researchers and practitioners avoid using certain words to describe the difficulties and impairments experienced by individuals with ASD to reduce stigma. The proposed limitations on terminology were developed by only a subset of the autism community, and the recommendations are already causing negative consequences that may be harmful to future scientific and clinical endeavors and, ultimately, to people with ASD. No one should have the power to censor language to exclude the observable realities of autism. Scientists and clinicians must be able to use any scientifically accurate terms necessary to describe the wide range of autistic people they study and support, without fear of censure or retribution. En ligne : https://doi.org/10.1002/aur.2876 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=498

A lost generation? The impact of the COVID-19 pandemic on early career ASD researchers / Clare HARROP in Autism Research, 14-6 (June 2021)  

Public ISBD [article]  inAutism Research > 14-6 (June 2021) . - p.1078-1087 Titre : A lost generation? The impact of the COVID-19 pandemic on early career ASD researchers Type de document : texte imprimé Auteurs : Clare HARROP, Auteur ; Vanessa H. BAL, Auteur ; Kimberly L.H. CARPENTER, Auteur ; Alycia K. HALLADAY, Auteur Article en page(s) : p.1078-1087 Langues : Anglais (eng) Mots-clés : Autism Spectrum Disorder  Biomedical Research/organization & administration/trends  Covid-19  Career Mobility  Efficiency  Humans  Mental Health/statistics & numerical data  Pandemics  Research Personnel/economics/education/psychology  autism research  early career researchers Index. décimale : PER Périodiques Résumé : The COVID-19 pandemic has disrupted autism research and services. Early career researchers (ECRs) are particularly vulnerable to the impact of the pandemic on job security and career development. The goal of this study was to capture the challenges ECRs are facing during the pandemic and the supports that are needed for career development and research. ECRs were invited to complete an online survey that focused on four major areas; the impact of COVID-19 on their research; changes in productivity due to COVID-19; changes to training due to COVID-19; and current mental health. 150 ECRs were eligible and provided sufficient data for inclusion. All but one ECRs reported their research had been negatively impacted by the pandemic. Reductions in productivity were reported by 85% of ECRs. The biggest impacts included recruitment of participants, increased needs at home and personal mental health. ECRs reported a 3-fold increase in burnout, as well as increased anxiety. ECR supports, such as funding, flexibility, and tenure extensions, are required to ensure ASD research does not suffer from a "lost generation" of researchers. LAY SUMMARY: The COVID-19 pandemic has had negative impacts on research around the world. Loss of productivity impedes autism research discoveries. However, researchers in the earliest phases of their career, specifically postdoctoral fellows through individuals in assistant professor (or equivalent) positions, are particularly vulnerable to long-lasting effects of pandemic-related disruptions which may limit their ability to continue as autism researchers. This survey highlights the needs of this group and identifies mechanisms by which these early career researchers may be supported in this time. This is critical to ensure the next generation of ASD researchers and clinician scientists continue on the path to advancing understanding of autism in the decades to come. En ligne : http://dx.doi.org/10.1002/aur.2503 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=449 [article] A lost generation? The impact of the COVID-19 pandemic on early career ASD researchers [texte imprimé] / Clare HARROP, Auteur ; Vanessa H. BAL, Auteur ; Kimberly L.H. CARPENTER, Auteur ; Alycia K. HALLADAY, Auteur . - p.1078-1087. Langues : Anglais (eng) in Autism Research > 14-6 (June 2021) . - p.1078-1087 Mots-clés : Autism Spectrum Disorder  Biomedical Research/organization & administration/trends  Covid-19  Career Mobility  Efficiency  Humans  Mental Health/statistics & numerical data  Pandemics  Research Personnel/economics/education/psychology  autism research  early career researchers Index. décimale : PER Périodiques Résumé : The COVID-19 pandemic has disrupted autism research and services. Early career researchers (ECRs) are particularly vulnerable to the impact of the pandemic on job security and career development. The goal of this study was to capture the challenges ECRs are facing during the pandemic and the supports that are needed for career development and research. ECRs were invited to complete an online survey that focused on four major areas; the impact of COVID-19 on their research; changes in productivity due to COVID-19; changes to training due to COVID-19; and current mental health. 150 ECRs were eligible and provided sufficient data for inclusion. All but one ECRs reported their research had been negatively impacted by the pandemic. Reductions in productivity were reported by 85% of ECRs. The biggest impacts included recruitment of participants, increased needs at home and personal mental health. ECRs reported a 3-fold increase in burnout, as well as increased anxiety. ECR supports, such as funding, flexibility, and tenure extensions, are required to ensure ASD research does not suffer from a "lost generation" of researchers. LAY SUMMARY: The COVID-19 pandemic has had negative impacts on research around the world. Loss of productivity impedes autism research discoveries. However, researchers in the earliest phases of their career, specifically postdoctoral fellows through individuals in assistant professor (or equivalent) positions, are particularly vulnerable to long-lasting effects of pandemic-related disruptions which may limit their ability to continue as autism researchers. This survey highlights the needs of this group and identifies mechanisms by which these early career researchers may be supported in this time. This is critical to ensure the next generation of ASD researchers and clinician scientists continue on the path to advancing understanding of autism in the decades to come. En ligne : http://dx.doi.org/10.1002/aur.2503 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=449

Making Research Possible: Barriers and Solutions For Those With ASD and ID / Audrey THURM in Journal of Autism and Developmental Disorders, 52-10 (October 2022)  

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Measuring Anxiety as a Treatment Endpoint in Youth with Autism Spectrum Disorder / Luc LECAVALIER in Journal of Autism and Developmental Disorders, 44-5 (May 2014)  

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Measuring repetitive behaviors as a treatment endpoint in youth with autism spectrum disorder / Lawrence SCAHILL in Autism, 19-1 (January 2015)  

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Measuring social communication behaviors as a treatment endpoint in individuals with autism spectrum disorder / Evdokia ANAGNOSTOU in Autism, 19-5 (July 2015)  

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Methodological challenges and opportunities when studying the course of autism / Peter SZATMARI ; Stelios GEORGIADES ; Stephen J. GENTLES ; Jessica GIRAULT ; Patricia HOWLIN ; Meng-Chuan LAI ; Virginia CARTER LENO ; Catherine LORD ; Katie MADGETT ; Stephen J. SHEINKOPF ; Emily SIMONOFF ; Zachary J WILLIAMS ; Lonnie ZWAIGENBAUM ; Alycia K. HALLADAY in Autism, 29-10 (October 2025)  

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Multi-informant International Perspectives on the Facilitators and Barriers to Employment for Autistic Adults / Melissa H. BLACK in Autism Research, 13-7 (July 2020)  

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Naturalistic Developmental Behavioral Interventions: Empirically Validated Treatments for Autism Spectrum Disorder / Laura SCHREIBMAN in Journal of Autism and Developmental Disorders, 45-8 (August 2015)  

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Perspectives of key stakeholders on employment of autistic adults across the united states, australia, and sweden / Melissa H. BLACK in Autism Research, 12-11 (November 2019)  

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Response to letter from Ryan Collis / Amy LUTZ in Autism Research, 16-4 (April 2023)  

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Response to Natri / Alison SINGER in Autism Research, 16-4 (April 2023)  

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