Autism in Southeast Europe: A Survey of Caregivers of Children with Autism Spectrum Disorders / Amy M. DANIELS in Journal of Autism and Developmental Disorders, 47-8 (August 2017)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 47-8 (August 2017) . - p.2314-2325 Titre : Autism in Southeast Europe: A Survey of Caregivers of Children with Autism Spectrum Disorders Type de document : Texte imprimé et/ou numérique Auteurs : Amy M. DANIELS, Auteur ; Ariel COMO, Auteur ; Sabri HERGUNER, Auteur ; Krasimira KOSTADINOVA, Auteur ; Jasmina STOSIC, Auteur ; Andy SHIH, Auteur Article en page(s) : p.2314-2325 Langues : Anglais (eng) Mots-clés : Southeast  Europe  Caregivers  Diagnosis  Services  Stigma Index. décimale : PER Périodiques Résumé : The aim of this study was to understand the diagnostic, service and lived experiences of families affected by ASD in Southeast Europe. A total of 758 caregivers from Albania, Bulgaria, Croatia and Turkey were surveyed from 2013 to 2015 about characteristics of the child with ASD; service encounters; and caregiver perceptions. The average age at first concern was 24.4 months (SD 11.8) and at diagnosis, 40.0 months (SD 19.0). Psychiatrists were the most common diagnostician; most children received some ASD-related service, most frequently speech and language therapy. Caregivers endorsed challenges in access to care and perceived stigma. Despite country differences, findings relative to age at first concern, disparities in access and service utilization, and stigma speak to common regional needs. En ligne : https://doi.org/10.1007/s10803-017-3145-x Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=314 [article] Autism in Southeast Europe: A Survey of Caregivers of Children with Autism Spectrum Disorders [Texte imprimé et/ou numérique] / Amy M. DANIELS, Auteur ; Ariel COMO, Auteur ; Sabri HERGUNER, Auteur ; Krasimira KOSTADINOVA, Auteur ; Jasmina STOSIC, Auteur ; Andy SHIH, Auteur . - p.2314-2325. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 47-8 (August 2017) . - p.2314-2325 Mots-clés : Southeast  Europe  Caregivers  Diagnosis  Services  Stigma Index. décimale : PER Périodiques Résumé : The aim of this study was to understand the diagnostic, service and lived experiences of families affected by ASD in Southeast Europe. A total of 758 caregivers from Albania, Bulgaria, Croatia and Turkey were surveyed from 2013 to 2015 about characteristics of the child with ASD; service encounters; and caregiver perceptions. The average age at first concern was 24.4 months (SD 11.8) and at diagnosis, 40.0 months (SD 19.0). Psychiatrists were the most common diagnostician; most children received some ASD-related service, most frequently speech and language therapy. Caregivers endorsed challenges in access to care and perceived stigma. Despite country differences, findings relative to age at first concern, disparities in access and service utilization, and stigma speak to common regional needs. En ligne : https://doi.org/10.1007/s10803-017-3145-x Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=314

Autism screening and diagnosis in low resource settings: Challenges and opportunities to enhance research and services worldwide / Maureen S. DURKIN in Autism Research, 8-5 (October 2015)  

Public ISBD [article]  inAutism Research > 8-5 (October 2015) . - p.473-476 Titre : Autism screening and diagnosis in low resource settings: Challenges and opportunities to enhance research and services worldwide Type de document : Texte imprimé et/ou numérique Auteurs : Maureen S. DURKIN, Auteur ; Mayada ELSABBAGH, Auteur ; Josephine BARBARO, Auteur ; Melissa GLADSTONE, Auteur ; Francesca HAPPE, Auteur ; Rosa A. HOEKSTRA, Auteur ; Li-Ching LEE, Auteur ; Alexia RATTAZZI, Auteur ; Jennifer STAPEL-WAX, Auteur ; Wendy L. STONE, Auteur ; Helen TAGER-FLUSBERG, Auteur ; Audrey THURM, Auteur ; Mark TOMLINSON, Auteur ; Andy SHIH, Auteur Article en page(s) : p.473-476 Langues : Anglais (eng) Mots-clés : diagnosis  early detection  epidemiology  intervention Index. décimale : PER Périodiques Résumé : Most research into the epidemiology, etiology, clinical manifestations, diagnosis and treatment of autism is based on studies in high income countries. Moreover, within high income countries, individuals of high socioeconomic status are disproportionately represented among participants in autism research. Corresponding disparities in access to autism screening, diagnosis, and treatment exist globally. One of the barriers perpetuating this imbalance is the high cost of proprietary tools for diagnosing autism and for delivering evidence-based therapies. Another barrier is the high cost of training of professionals and para-professionals to use the tools. Open-source and open access models provide a way to facilitate global collaboration and training. Using these models and technologies, the autism scientific community and clinicians worldwide should be able to work more effectively and efficiently than they have to date to address the global imbalance in autism knowledge and at the same time advance our understanding of autism and our ability to deliver cost-effective services to everyone in need. Autism Res 2015, 8: 473–476. © 2015 International Society for Autism Research, Wiley Periodicals, Inc. En ligne : http://dx.doi.org/10.1002/aur.1575 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=269 [article] Autism screening and diagnosis in low resource settings: Challenges and opportunities to enhance research and services worldwide [Texte imprimé et/ou numérique] / Maureen S. DURKIN, Auteur ; Mayada ELSABBAGH, Auteur ; Josephine BARBARO, Auteur ; Melissa GLADSTONE, Auteur ; Francesca HAPPE, Auteur ; Rosa A. HOEKSTRA, Auteur ; Li-Ching LEE, Auteur ; Alexia RATTAZZI, Auteur ; Jennifer STAPEL-WAX, Auteur ; Wendy L. STONE, Auteur ; Helen TAGER-FLUSBERG, Auteur ; Audrey THURM, Auteur ; Mark TOMLINSON, Auteur ; Andy SHIH, Auteur . - p.473-476. Langues : Anglais (eng) in Autism Research > 8-5 (October 2015) . - p.473-476 Mots-clés : diagnosis  early detection  epidemiology  intervention Index. décimale : PER Périodiques Résumé : Most research into the epidemiology, etiology, clinical manifestations, diagnosis and treatment of autism is based on studies in high income countries. Moreover, within high income countries, individuals of high socioeconomic status are disproportionately represented among participants in autism research. Corresponding disparities in access to autism screening, diagnosis, and treatment exist globally. One of the barriers perpetuating this imbalance is the high cost of proprietary tools for diagnosing autism and for delivering evidence-based therapies. Another barrier is the high cost of training of professionals and para-professionals to use the tools. Open-source and open access models provide a way to facilitate global collaboration and training. Using these models and technologies, the autism scientific community and clinicians worldwide should be able to work more effectively and efficiently than they have to date to address the global imbalance in autism knowledge and at the same time advance our understanding of autism and our ability to deliver cost-effective services to everyone in need. Autism Res 2015, 8: 473–476. © 2015 International Society for Autism Research, Wiley Periodicals, Inc. En ligne : http://dx.doi.org/10.1002/aur.1575 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=269

Brief Report: Impact of COVID-19 in Individuals with Autism Spectrum Disorders: Analysis of a National Private Claims Insurance Database / Arun KARPUR in Journal of Autism and Developmental Disorders, 52-5 (May 2022)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 52-5 (May 2022) . - p.2350-2356 Titre : Brief Report: Impact of COVID-19 in Individuals with Autism Spectrum Disorders: Analysis of a National Private Claims Insurance Database Type de document : Texte imprimé et/ou numérique Auteurs : Arun KARPUR, Auteur ; Vijay VASUDEVAN, Auteur ; Andy SHIH, Auteur ; Thomas FRAZIER, Auteur Article en page(s) : p.2350-2356 Langues : Anglais (eng) Mots-clés : Autism Spectrum Disorder/epidemiology  COVID-19/epidemiology  Humans  Insurance  Length of Stay  Pandemics  Autism spectrum disorders  COVID-19 pandemic  FAIR health inc.  Hospitalization  Intellectual disabilities Index. décimale : PER Périodiques Résumé : The COVID-19 pandemic continues to have a detrimental impact on individuals with disabilities. Data from FAIR Health's FH® NPIC (National Private Insurance Claims) database, one of the nation's largest databases of private insurance claim records, were analyzed to understand the experiences of individuals with ASD in the COVID-19 pandemic. Multivariate logistic regression models revealed that individuals with ASD?+?ID were nine times more likely to be hospitalized following COVID-19 infection (OR=9.3; 95% CI: 6.9-12.5) and were nearly six times more likely to have an elevated length of hospital stay (OR=5.9; 95% CI: 3.5-10.1) compared to those without ASD?+?ID. These findings point to the need for prioritizing access to vaccines to prevent COVID-19 infection and morbidities. This is the first study to illustrate a higher likelihood of hospitalization and elevated length of hospital stay from COVID-19 in individuals with ASD and other comorbidities. En ligne : http://dx.doi.org/10.1007/s10803-021-05100-x Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=476 [article] Brief Report: Impact of COVID-19 in Individuals with Autism Spectrum Disorders: Analysis of a National Private Claims Insurance Database [Texte imprimé et/ou numérique] / Arun KARPUR, Auteur ; Vijay VASUDEVAN, Auteur ; Andy SHIH, Auteur ; Thomas FRAZIER, Auteur . - p.2350-2356. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 52-5 (May 2022) . - p.2350-2356 Mots-clés : Autism Spectrum Disorder/epidemiology  COVID-19/epidemiology  Humans  Insurance  Length of Stay  Pandemics  Autism spectrum disorders  COVID-19 pandemic  FAIR health inc.  Hospitalization  Intellectual disabilities Index. décimale : PER Périodiques Résumé : The COVID-19 pandemic continues to have a detrimental impact on individuals with disabilities. Data from FAIR Health's FH® NPIC (National Private Insurance Claims) database, one of the nation's largest databases of private insurance claim records, were analyzed to understand the experiences of individuals with ASD in the COVID-19 pandemic. Multivariate logistic regression models revealed that individuals with ASD?+?ID were nine times more likely to be hospitalized following COVID-19 infection (OR=9.3; 95% CI: 6.9-12.5) and were nearly six times more likely to have an elevated length of hospital stay (OR=5.9; 95% CI: 3.5-10.1) compared to those without ASD?+?ID. These findings point to the need for prioritizing access to vaccines to prevent COVID-19 infection and morbidities. This is the first study to illustrate a higher likelihood of hospitalization and elevated length of hospital stay from COVID-19 in individuals with ASD and other comorbidities. En ligne : http://dx.doi.org/10.1007/s10803-021-05100-x Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=476

Challenges, priorities, barriers to care, and stigma in families of people with autism: Similarities and differences among six Latin American countries / Cristiane Silvestre PAULA in Autism, 24-8 (November 2020)  

Public ISBD [article]  inAutism > 24-8 (November 2020) . - p.2228-2242 Titre : Challenges, priorities, barriers to care, and stigma in families of people with autism: Similarities and differences among six Latin American countries Type de document : Texte imprimé et/ou numérique Auteurs : Cristiane Silvestre PAULA, Auteur ; Sebastián CUKIER, Auteur ; Graccielle Rodrigues CUNHA, Auteur ; Matías IRARRÁZAVAL, Auteur ; Cecilia MONTIEL-NAVA, Auteur ; Ricardo GARCIA, Auteur ; Analia ROSOLI, Auteur ; Daniel VALDEZ, Auteur ; Daniela BORDINI, Auteur ; Andy SHIH, Auteur ; Gabriela GARRIDO, Auteur ; Alexia RATTAZZI, Auteur Article en page(s) : p.2228-2242 Langues : Anglais (eng) Mots-clés : *autism  *economic costs  *healthcare utilization  *stigma  *treatment barriers Index. décimale : PER Périodiques Résumé : Approximately 6 million individuals with autism spectrum disorder live in Latin America. In order to strengthen autism spectrum disorder research collaborations and awareness in the region, the Latin American Autism Spectrum Network (Red Espectro Autista Latinoamerica) was constituted in 2015, comprising researchers and clinicians from the following six countries: Brazil Argentina, Chile, Uruguay, Venezuela, and the Dominican Republic. This first multisite study from the Red Espectro Autista Latinoamerica network aims to describe the challenges and priorities to identify barriers to care and to map stigma among families of individuals with autism spectrum disorder living in Latin America. A total of 2942 caregivers from these six countries completed an online survey showing that the main priorities were greater community awareness and improvements in the educational system for individuals with autism spectrum disorder. In addition to that, the main barriers to care were related to lack of structure, mainly waiting lists (50.2%), high treatment costs (35.2%), and lack of specialized services (26.1%). Stigma experienced by families was frequent: one third reported feeling discriminated against and helpless for having a child with autism spectrum disorder. Also, 48.8% of the caregivers declared financial problems, 47.4% of them had to cut down work hours, and 35.5% had to leave their jobs because of their child's autism spectrum disorder. This is a pioneer study providing a description of the needs and challenges faced by families affected by autism spectrum disorder in Latin America, helping to build data-driven strategies at the national and regional levels. En ligne : http://dx.doi.org/10.1177/1362361320940073 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=431 [article] Challenges, priorities, barriers to care, and stigma in families of people with autism: Similarities and differences among six Latin American countries [Texte imprimé et/ou numérique] / Cristiane Silvestre PAULA, Auteur ; Sebastián CUKIER, Auteur ; Graccielle Rodrigues CUNHA, Auteur ; Matías IRARRÁZAVAL, Auteur ; Cecilia MONTIEL-NAVA, Auteur ; Ricardo GARCIA, Auteur ; Analia ROSOLI, Auteur ; Daniel VALDEZ, Auteur ; Daniela BORDINI, Auteur ; Andy SHIH, Auteur ; Gabriela GARRIDO, Auteur ; Alexia RATTAZZI, Auteur . - p.2228-2242. Langues : Anglais (eng) in Autism > 24-8 (November 2020) . - p.2228-2242 Mots-clés : *autism  *economic costs  *healthcare utilization  *stigma  *treatment barriers Index. décimale : PER Périodiques Résumé : Approximately 6 million individuals with autism spectrum disorder live in Latin America. In order to strengthen autism spectrum disorder research collaborations and awareness in the region, the Latin American Autism Spectrum Network (Red Espectro Autista Latinoamerica) was constituted in 2015, comprising researchers and clinicians from the following six countries: Brazil Argentina, Chile, Uruguay, Venezuela, and the Dominican Republic. This first multisite study from the Red Espectro Autista Latinoamerica network aims to describe the challenges and priorities to identify barriers to care and to map stigma among families of individuals with autism spectrum disorder living in Latin America. A total of 2942 caregivers from these six countries completed an online survey showing that the main priorities were greater community awareness and improvements in the educational system for individuals with autism spectrum disorder. In addition to that, the main barriers to care were related to lack of structure, mainly waiting lists (50.2%), high treatment costs (35.2%), and lack of specialized services (26.1%). Stigma experienced by families was frequent: one third reported feeling discriminated against and helpless for having a child with autism spectrum disorder. Also, 48.8% of the caregivers declared financial problems, 47.4% of them had to cut down work hours, and 35.5% had to leave their jobs because of their child's autism spectrum disorder. This is a pioneer study providing a description of the needs and challenges faced by families affected by autism spectrum disorder in Latin America, helping to build data-driven strategies at the national and regional levels. En ligne : http://dx.doi.org/10.1177/1362361320940073 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=431

Development and Psychometric Evaluation of the Open-Source Challenging Behavior Scale (OS-CBS) / Izma KHALIQ ; Keeley SCULLIN ; Mirko ULJAREVIC ; Andy SHIH ; Arun KARPUR in Journal of Autism and Developmental Disorders, 53-12 (December 2023)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 53-12 (December 2023) . - p.4655-4670 Titre : Development and Psychometric Evaluation of the Open-Source Challenging Behavior Scale (OS-CBS) Type de document : Texte imprimé et/ou numérique Auteurs : Izma KHALIQ, Auteur ; Keeley SCULLIN, Auteur ; Mirko ULJAREVIC, Auteur ; Andy SHIH, Auteur ; Arun KARPUR, Auteur Article en page(s) : p.4655-4670 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : At present, there are no brief, freely-available, informant-report measures that evaluate key challenging behaviors relevant to youth with autism spectrum disorder (ASD) or other developmental disabilities (DD). This paper describes the development, refinement, and initial psychometric evaluation of a new 18-item measure, the Open-Source Challenging Behavior Scale (OS-CBS). In a large sample (n=2004, 169 with ASD, ages 2-17), results of psychometric analyses indicated a clear factor structure (property destruction, aggression, elopement, conduct problems, and self-injury and a general factor with high loadings from all items) based on exploratory structural equation modeling, good scale reliability (?=.66-.83 for subscales, ?=.91 total scale), measurement invariance across demographics, and good construct validity. The OS-CBS is a psychometrically-sound instrument for screening and monitoring intervention progress. En ligne : https://doi.org/10.1007/s10803-022-05750-5 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=515 [article] Development and Psychometric Evaluation of the Open-Source Challenging Behavior Scale (OS-CBS) [Texte imprimé et/ou numérique] / Izma KHALIQ, Auteur ; Keeley SCULLIN, Auteur ; Mirko ULJAREVIC, Auteur ; Andy SHIH, Auteur ; Arun KARPUR, Auteur . - p.4655-4670. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 53-12 (December 2023) . - p.4655-4670 Index. décimale : PER Périodiques Résumé : At present, there are no brief, freely-available, informant-report measures that evaluate key challenging behaviors relevant to youth with autism spectrum disorder (ASD) or other developmental disabilities (DD). This paper describes the development, refinement, and initial psychometric evaluation of a new 18-item measure, the Open-Source Challenging Behavior Scale (OS-CBS). In a large sample (n=2004, 169 with ASD, ages 2-17), results of psychometric analyses indicated a clear factor structure (property destruction, aggression, elopement, conduct problems, and self-injury and a general factor with high loadings from all items) based on exploratory structural equation modeling, good scale reliability (?=.66-.83 for subscales, ?=.91 total scale), measurement invariance across demographics, and good construct validity. The OS-CBS is a psychometrically-sound instrument for screening and monitoring intervention progress. En ligne : https://doi.org/10.1007/s10803-022-05750-5 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=515

Evaluation of an adapted virtual training for master trainers of the WHO Caregiver Skills Training Program during the COVID-19 pandemic / Afiqah YUSUF ; Hannah PICKARD ; Pamela DIXON ; Andy SHIH ; Stephanie Shire ; Andrew PICKLES ; Mayada ELSABBAGH in Autism, 28-2 (February 2024)  

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Global prevalence of autism: A systematic review update / Jinan ZEIDAN in Autism Research, 15-5 (May 2022)  

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A Global Public Health Strategy for Autism Spectrum Disorders / Simon WALLACE in Autism Research, 5-3 (June 2012)  

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Psychometric properties of the Chinese Parent Version of the Autism Spectrum Rating Scale: Rasch analysis / Weili YAN in Autism, 26-7 (October 2022)  

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The Autism Simplex Collection: an international, expertly phenotyped autism sample for genetic and phenotypic analyses / Joseph D. BUXBAUM in Molecular Autism, (May 2014)  

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The time has come for living systematic reviews in autism research / Mayada ELSABBAGH in Autism Research, 15-7 (July 2022)  

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Urban and rural differences in needs, service use and satisfaction among caregivers of autistic children in Morocco / Mohamed BOUTJDIR ; Tahar EL-KORCHI ; Hafida TORRES ; Arun KARPUR ; Andy SHIH ; Abdeslem ELIDRISSI in Autism, 28-1 (January 2024)  

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