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)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 52-10 (October 2022) . - p.4646-4650 Titre : Making Research Possible: Barriers and Solutions For Those With ASD and ID Type de document : texte imprimé Auteurs : Audrey THURM, Auteur ; Alycia K. HALLADAY, Auteur ; David S. MANDELL, Auteur ; Melissa MAYE, Auteur ; Sarah ETHRIDGE, Auteur ; Cristan FARMER, Auteur Article en page(s) : p.4646-4650 Langues : Anglais (eng) Mots-clés : Inclusion  Intellectual Disability  Participation  Research Index. décimale : PER Périodiques Résumé : Participation in research can provide direct and indirect benefit to individuals with autism spectrum disorder (ASD), their caregivers, families, and society at large. Unfortunately, individuals with high support needs, including those with intellectual disability, cognitive disability or minimal verbal ability, are often systematically excluded from research on ASD. This limits the ability to generalize discoveries to all people with ASD, and results in a disparity in who benefits from research. This piece outlines the importance and extent of the problem, which is part of a broader lack of inclusivity in ASD research. It also provides examples of studies that have directly addressed issues that arise when conducting inclusive research and makes recommendations for researchers to reduce disparities in research participation. En ligne : http://dx.doi.org/10.1007/s10803-021-05320-1 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=486 [article] Making Research Possible: Barriers and Solutions For Those With ASD and ID [texte imprimé] / Audrey THURM, Auteur ; Alycia K. HALLADAY, Auteur ; David S. MANDELL, Auteur ; Melissa MAYE, Auteur ; Sarah ETHRIDGE, Auteur ; Cristan FARMER, Auteur . - p.4646-4650. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 52-10 (October 2022) . - p.4646-4650 Mots-clés : Inclusion  Intellectual Disability  Participation  Research Index. décimale : PER Périodiques Résumé : Participation in research can provide direct and indirect benefit to individuals with autism spectrum disorder (ASD), their caregivers, families, and society at large. Unfortunately, individuals with high support needs, including those with intellectual disability, cognitive disability or minimal verbal ability, are often systematically excluded from research on ASD. This limits the ability to generalize discoveries to all people with ASD, and results in a disparity in who benefits from research. This piece outlines the importance and extent of the problem, which is part of a broader lack of inclusivity in ASD research. It also provides examples of studies that have directly addressed issues that arise when conducting inclusive research and makes recommendations for researchers to reduce disparities in research participation. En ligne : http://dx.doi.org/10.1007/s10803-021-05320-1 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=486

Medicaid 1915(c) Home- and Community-Based Services waivers for children with autism spectrum disorder / Diana L. VELOTT in Autism, 20-4 (May 2016)  

Public ISBD [article]  inAutism > 20-4 (May 2016) . - p.473-482 Titre : Medicaid 1915(c) Home- and Community-Based Services waivers for children with autism spectrum disorder Type de document : texte imprimé Auteurs : Diana L. VELOTT, Auteur ; Edeanya AGBESE, Auteur ; David S. MANDELL, Auteur ; Bradley D. STEIN, Auteur ; Andrew W. DICK, Auteur ; Hao YU, Auteur ; Douglas L. LESLIE, Auteur Article en page(s) : p.473-482 Langues : Anglais (eng) Mots-clés : access to health care  autism spectrum disorders  children  Medicaid  waivers Index. décimale : PER Périodiques Résumé : This research aims to describe the characteristics of 1915(c) Home- and Community-Based Services waivers for children with autism spectrum disorder across states and over time. While increasingly popular, little is known about these Medicaid waivers. Understanding the characteristics of these programs is important to clinicians and policymakers in designing programs to meet the needs of this vulnerable population and to set the stage for evaluating changes that occur with the implementation of health-care reform. Home- and Community-Based Services waiver applications that included children with autism spectrum disorder as a target population were collected from the Centers for Medicare and Medicaid Services website, state websites, and state administrators. A data extraction tool was used to document waiver inclusions and restrictions, estimated service provision and institutional costs, and the inclusion of four core autism spectrum disorder services: respite, caregiver support and training, personal care, and evidence-based treatments. Investigators identified 50 current or former waivers across 29 states that explicitly included children with autism spectrum disorder in their target populations. Waivers differed substantially across states in the type and breadth of autism spectrum disorder coverage provided. Specifically, waivers varied in the populations they targeted, estimated cost of services, cost control methods employed, and services offered to children with autism spectrum disorder. Home- and Community-Based Services waivers for children with autism spectrum disorder are very complex and are not consistent across states or over time. Further efforts are needed to examine the characteristics of programs that are associated with improved access to care and clinical outcomes to maximize the benefits to individuals with autism spectrum disorder and their families. En ligne : http://dx.doi.org/10.1177/1362361315590806 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=287 [article] Medicaid 1915(c) Home- and Community-Based Services waivers for children with autism spectrum disorder [texte imprimé] / Diana L. VELOTT, Auteur ; Edeanya AGBESE, Auteur ; David S. MANDELL, Auteur ; Bradley D. STEIN, Auteur ; Andrew W. DICK, Auteur ; Hao YU, Auteur ; Douglas L. LESLIE, Auteur . - p.473-482. Langues : Anglais (eng) in Autism > 20-4 (May 2016) . - p.473-482 Mots-clés : access to health care  autism spectrum disorders  children  Medicaid  waivers Index. décimale : PER Périodiques Résumé : This research aims to describe the characteristics of 1915(c) Home- and Community-Based Services waivers for children with autism spectrum disorder across states and over time. While increasingly popular, little is known about these Medicaid waivers. Understanding the characteristics of these programs is important to clinicians and policymakers in designing programs to meet the needs of this vulnerable population and to set the stage for evaluating changes that occur with the implementation of health-care reform. Home- and Community-Based Services waiver applications that included children with autism spectrum disorder as a target population were collected from the Centers for Medicare and Medicaid Services website, state websites, and state administrators. A data extraction tool was used to document waiver inclusions and restrictions, estimated service provision and institutional costs, and the inclusion of four core autism spectrum disorder services: respite, caregiver support and training, personal care, and evidence-based treatments. Investigators identified 50 current or former waivers across 29 states that explicitly included children with autism spectrum disorder in their target populations. Waivers differed substantially across states in the type and breadth of autism spectrum disorder coverage provided. Specifically, waivers varied in the populations they targeted, estimated cost of services, cost control methods employed, and services offered to children with autism spectrum disorder. Home- and Community-Based Services waivers for children with autism spectrum disorder are very complex and are not consistent across states or over time. Further efforts are needed to examine the characteristics of programs that are associated with improved access to care and clinical outcomes to maximize the benefits to individuals with autism spectrum disorder and their families. En ligne : http://dx.doi.org/10.1177/1362361315590806 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=287

Mental Health Clinicians' Screening and Intervention Practices to Reduce Suicide Risk in Autistic Adolescents and Adults / Shari JAGER-HYMAN in Journal of Autism and Developmental Disorders, 50-10 (October 2020)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 50-10 (October 2020) . - p.3450-3461 Titre : Mental Health Clinicians' Screening and Intervention Practices to Reduce Suicide Risk in Autistic Adolescents and Adults Type de document : texte imprimé Auteurs : Shari JAGER-HYMAN, Auteur ; Brenna B. MADDOX, Auteur ; Samantha CRABBE, Auteur ; David S. MANDELL, Auteur Article en page(s) : p.3450-3461 Langues : Anglais (eng) Mots-clés : Autism spectrum disorder  Safety planning intervention  Screening  Suicide Index. décimale : PER Périodiques Résumé : Autistic individuals experience elevated risk for suicide ideation, attempts, and deaths. Little is known about how clinicians assess risk or intervene with suicidal autistic individuals. We surveyed 121 clinicians about use of suicide prevention practices with autistic and non-autistic clients. Clinicians reported greater self-efficacy in screening for suicide risk among non-autistic clients (p = 0.01). There were no statistically significant differences in whether they used standardized screening measures or in their reported normative pressure or attitudes towards screening. Clinicians reported similar rates of use of Safety Planning, an evidence-based suicide-prevention strategy, across groups, but greater acceptability for non-autistic clients (p < 0.001). These findings have implications for strategies to increase clinicians' adoption of these tools for autistic individuals. En ligne : http://dx.doi.org/10.1007/s10803-020-04441-3 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=432 [article] Mental Health Clinicians' Screening and Intervention Practices to Reduce Suicide Risk in Autistic Adolescents and Adults [texte imprimé] / Shari JAGER-HYMAN, Auteur ; Brenna B. MADDOX, Auteur ; Samantha CRABBE, Auteur ; David S. MANDELL, Auteur . - p.3450-3461. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 50-10 (October 2020) . - p.3450-3461 Mots-clés : Autism spectrum disorder  Safety planning intervention  Screening  Suicide Index. décimale : PER Périodiques Résumé : Autistic individuals experience elevated risk for suicide ideation, attempts, and deaths. Little is known about how clinicians assess risk or intervene with suicidal autistic individuals. We surveyed 121 clinicians about use of suicide prevention practices with autistic and non-autistic clients. Clinicians reported greater self-efficacy in screening for suicide risk among non-autistic clients (p = 0.01). There were no statistically significant differences in whether they used standardized screening measures or in their reported normative pressure or attitudes towards screening. Clinicians reported similar rates of use of Safety Planning, an evidence-based suicide-prevention strategy, across groups, but greater acceptability for non-autistic clients (p < 0.001). These findings have implications for strategies to increase clinicians' adoption of these tools for autistic individuals. En ligne : http://dx.doi.org/10.1007/s10803-020-04441-3 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=432

A multi-constituent qualitative examination of facilitators and barriers to caregiver coaching for autistic children in publicly funded early intervention / Jordan ALBRIGHT in Autism, 29-1 (January 2025)  

Public ISBD [article]  inAutism > 29-1 (January 2025) . - p.130-142 Titre : A multi-constituent qualitative examination of facilitators and barriers to caregiver coaching for autistic children in publicly funded early intervention Type de document : texte imprimé Auteurs : Jordan ALBRIGHT, Auteur ; Jacqueline A. SHINALL, Auteur ; Liza TOMCZUK, Auteur ; Rebecca E. STEWART, Auteur ; David S. MANDELL, Auteur ; Aubyn C. STAHMER, Auteur ; Rinad S. BEIDAS, Auteur ; Melanie PELLECCHIA, Auteur Article en page(s) : p.130-142 Langues : Anglais (eng) Mots-clés : autism spectrum disorders  interventions-psychosocial/behavioral  preschool children  qualitative research Index. décimale : PER Périodiques Résumé : Caregiver coaching is an evidence-based practice for autistic children that is poorly implemented in community-based early intervention. Previous studies have identified factors that influence implementation of caregiver coaching in early intervention; however, multi-informant (e.g., caregiver, provider, leadership) qualitative research is lacking. As such, the purpose of this study was to simultaneously examine the perspectives of caregivers and early intervention providers and agency leaders for triangulation of perceived barriers and facilitators to caregiver coaching in community-based early intervention. Interviews with 36 providers, 6 agency leaders, and 20 caregivers of autistic children were conducted. We used qualitative thematic analysis to identify barriers and facilitators, which we then mapped onto the Consolidated Framework for Implementation Research post hoc. Several themes emerged, including at the outer setting level (i.e., COVID-19 pandemic), inner setting level (i.e., caregiver views toward telehealth), individual characteristic level (i.e., caregiver attitudes toward coaching, caregivers concerns preventing progress, caregiver expectations regarding services, caregiver stress), and implementation process level (i.e., caregiver and provider collaboration, caregiver and provider relationship, caregivers coordinating services, caregiver involvement, provider flexibility). We offer suggestions for implementation strategies that will increase adoption of caregiver coaching in early intervention for autistic children and their families.Lay AbstractCaregiver coaching is an evidence-based practice for young autistic children, but it is not widely used in community-based early intervention services. Previous research has explored why caregiver coaching is not widespread in early intervention, but only from the perspective of early intervention providers. Caregivers, providers, and administrators are all involved in the decision of whether to use caregiver coaching in early intervention. Therefore, it is important to include all perspectives in research regarding this practice. In this study we interviewed 20 caregivers of autistic children, 36 early intervention providers, and 6 administrators from early intervention agencies and asked questions about their perspectives regarding the use of caregiver coaching in early intervention. We did this to figure out what factors help and hinder the use of caregiver coaching in this setting and to see how caregivers, providers, and administrators agreed or disagreed on these factors. All participants agreed that caregivers' attitudes and expectations can influence whether caregiver coaching is used. In addition, all participants agreed that when caregivers and providers collaborate and have a strong working relationship, it can facilitate the use of caregiver coaching in early intervention. Other factors, such as caregiver stress and provider flexibility were also discussed. Based on these findings, we suggest strategies that can be used to possibly increase the use of caregiver coaching in early intervention for autistic children and their families. En ligne : https://dx.doi.org/10.1177/13623613241272993 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=544 [article] A multi-constituent qualitative examination of facilitators and barriers to caregiver coaching for autistic children in publicly funded early intervention [texte imprimé] / Jordan ALBRIGHT, Auteur ; Jacqueline A. SHINALL, Auteur ; Liza TOMCZUK, Auteur ; Rebecca E. STEWART, Auteur ; David S. MANDELL, Auteur ; Aubyn C. STAHMER, Auteur ; Rinad S. BEIDAS, Auteur ; Melanie PELLECCHIA, Auteur . - p.130-142. Langues : Anglais (eng) in Autism > 29-1 (January 2025) . - p.130-142 Mots-clés : autism spectrum disorders  interventions-psychosocial/behavioral  preschool children  qualitative research Index. décimale : PER Périodiques Résumé : Caregiver coaching is an evidence-based practice for autistic children that is poorly implemented in community-based early intervention. Previous studies have identified factors that influence implementation of caregiver coaching in early intervention; however, multi-informant (e.g., caregiver, provider, leadership) qualitative research is lacking. As such, the purpose of this study was to simultaneously examine the perspectives of caregivers and early intervention providers and agency leaders for triangulation of perceived barriers and facilitators to caregiver coaching in community-based early intervention. Interviews with 36 providers, 6 agency leaders, and 20 caregivers of autistic children were conducted. We used qualitative thematic analysis to identify barriers and facilitators, which we then mapped onto the Consolidated Framework for Implementation Research post hoc. Several themes emerged, including at the outer setting level (i.e., COVID-19 pandemic), inner setting level (i.e., caregiver views toward telehealth), individual characteristic level (i.e., caregiver attitudes toward coaching, caregivers concerns preventing progress, caregiver expectations regarding services, caregiver stress), and implementation process level (i.e., caregiver and provider collaboration, caregiver and provider relationship, caregivers coordinating services, caregiver involvement, provider flexibility). We offer suggestions for implementation strategies that will increase adoption of caregiver coaching in early intervention for autistic children and their families.Lay AbstractCaregiver coaching is an evidence-based practice for young autistic children, but it is not widely used in community-based early intervention services. Previous research has explored why caregiver coaching is not widespread in early intervention, but only from the perspective of early intervention providers. Caregivers, providers, and administrators are all involved in the decision of whether to use caregiver coaching in early intervention. Therefore, it is important to include all perspectives in research regarding this practice. In this study we interviewed 20 caregivers of autistic children, 36 early intervention providers, and 6 administrators from early intervention agencies and asked questions about their perspectives regarding the use of caregiver coaching in early intervention. We did this to figure out what factors help and hinder the use of caregiver coaching in this setting and to see how caregivers, providers, and administrators agreed or disagreed on these factors. All participants agreed that caregivers' attitudes and expectations can influence whether caregiver coaching is used. In addition, all participants agreed that when caregivers and providers collaborate and have a strong working relationship, it can facilitate the use of caregiver coaching in early intervention. Other factors, such as caregiver stress and provider flexibility were also discussed. Based on these findings, we suggest strategies that can be used to possibly increase the use of caregiver coaching in early intervention for autistic children and their families. En ligne : https://dx.doi.org/10.1177/13623613241272993 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=544

A new era for autism research, and for our journal / Liz PELLICANO in Autism, 22-2 (February 2018)  

Public ISBD [article]  inAutism > 22-2 (February 2018) . - p.82-83 Titre : A new era for autism research, and for our journal Type de document : texte imprimé Auteurs : Liz PELLICANO, Auteur ; William MANDY, Auteur ; Sven BÖLTE, Auteur ; Aubyn C. STAHMER, Auteur ; Julie LOUNDS TAYLOR, Auteur ; David S. MANDELL, Auteur Année de publication : 2018 Article en page(s) : p.82-83 Langues : Anglais (eng) Index. décimale : PER Périodiques En ligne : https://doi.org/10.1177/1362361317748556 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=335 [article] A new era for autism research, and for our journal [texte imprimé] / Liz PELLICANO, Auteur ; William MANDY, Auteur ; Sven BÖLTE, Auteur ; Aubyn C. STAHMER, Auteur ; Julie LOUNDS TAYLOR, Auteur ; David S. MANDELL, Auteur . - 2018 . - p.82-83. Langues : Anglais (eng) in Autism > 22-2 (February 2018) . - p.82-83 Index. décimale : PER Périodiques En ligne : https://doi.org/10.1177/1362361317748556 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=335

Notes on a puzzle piece / Roy Richard GRINKER in Autism, 19-6 (August 2015)  

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Pebbles, rocks, and boulders: The implementation of a school-based social engagement intervention for children with autism / Jill LOCKE in Autism, 21-8 (November 2017)  

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Prevalence and correlates of autism in a state psychiatric hospital / David S. MANDELL in Autism, 16-6 (November 2012)  

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Psychiatric Hospitalization Among Children with Autism Spectrum Disorders / David S. MANDELL in Journal of Autism and Developmental Disorders, 38-6 (July 2008)  

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Psychotropic Medication Use Among Children With Autism Spectrum Disorders Enrolled in a National Registry, 2007–2008 / Rebecca E. ROSENBERG in Journal of Autism and Developmental Disorders, 40-3 (March 2010)  

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Publishing standards for promoting excellence in autism research / Sue FLETCHER-WATSON in Autism, 25-6 (August 2021)  

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Publishing standards for promoting excellence in autism research / Sue FLETCHER-WATSON in Autism, 26-6 (August 2022)  

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Race, disability, and grade: Social relationships in children with autism spectrum disorders / Gazi F. AZAD in Autism, 21-1 (January 2017)  

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Research Review: Outcomes of 24- to 36-month-old children with autism spectrum disorder vary by ascertainment strategy: a systematic review and meta-analysis / Megan MICHELETTI in Journal of Child Psychology and Psychiatry, 61-1 (January 2020)  

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School Discipline, Hospitalization, and Police Contact Overlap Among Individuals with Autism Spectrum Disorder / Paul TURCOTTE in Journal of Autism and Developmental Disorders, 48-3 (March 2018)  

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