A commentary on interpreting the United States preventive services task force autism screening recommendation statement / Emily HICKEY in Autism, 25-2 (February 2021)  

Public ISBD [article]  inAutism > 25-2 (February 2021) . - p.588-592 Titre : A commentary on interpreting the United States preventive services task force autism screening recommendation statement Type de document : Texte imprimé et/ou numérique Auteurs : Emily HICKEY, Auteur ; R. Christopher SHELDRICK, Auteur ; Jocelyn KUHN, Auteur ; Sarabeth BRODER-FINGERT, Auteur Article en page(s) : p.588-592 Langues : Anglais (eng) Mots-clés : Uspstf  autism spectrum disorders  diagnosis  prevention  screening Index. décimale : PER Périodiques Résumé : In 2016, the US Preventive Services Task Force concluded that there was "insufficient" ("I" statement) evidence to support universal primary care screening for autism spectrum disorder. The statement led to controversy among research and clinical communities. Although a number of papers have since been published arguing for the potential benefit of autism spectrum disorder screening, none adequately address the potential harms of autism spectrum disorder screening. This evidence gap may relate to confusion regarding how the US Preventive Services Task Force conceptualizes and evaluates potential harm. In this commentary, we explore how the US Preventive Services Task Force operationalizes harm and discuss how the potential for harm was described in the "I" statement on autism spectrum disorder screening. This information can serve as a guide for investigators working to study the benefits and harms of autism spectrum disorder screening in order to fill the research gaps cited by the US Preventive Services Task Force report. Finally, we recommend future research directions for exploring harms of autism spectrum disorder screening, filling cited research gaps, and ultimately ensuring that the benefits of autism spectrum disorder screening truly outweigh the harms for all children and their families. En ligne : http://dx.doi.org/10.1177/1362361320957463 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=442 [article] A commentary on interpreting the United States preventive services task force autism screening recommendation statement [Texte imprimé et/ou numérique] / Emily HICKEY, Auteur ; R. Christopher SHELDRICK, Auteur ; Jocelyn KUHN, Auteur ; Sarabeth BRODER-FINGERT, Auteur . - p.588-592. Langues : Anglais (eng) in Autism > 25-2 (February 2021) . - p.588-592 Mots-clés : Uspstf  autism spectrum disorders  diagnosis  prevention  screening Index. décimale : PER Périodiques Résumé : In 2016, the US Preventive Services Task Force concluded that there was "insufficient" ("I" statement) evidence to support universal primary care screening for autism spectrum disorder. The statement led to controversy among research and clinical communities. Although a number of papers have since been published arguing for the potential benefit of autism spectrum disorder screening, none adequately address the potential harms of autism spectrum disorder screening. This evidence gap may relate to confusion regarding how the US Preventive Services Task Force conceptualizes and evaluates potential harm. In this commentary, we explore how the US Preventive Services Task Force operationalizes harm and discuss how the potential for harm was described in the "I" statement on autism spectrum disorder screening. This information can serve as a guide for investigators working to study the benefits and harms of autism spectrum disorder screening in order to fill the research gaps cited by the US Preventive Services Task Force report. Finally, we recommend future research directions for exploring harms of autism spectrum disorder screening, filling cited research gaps, and ultimately ensuring that the benefits of autism spectrum disorder screening truly outweigh the harms for all children and their families. En ligne : http://dx.doi.org/10.1177/1362361320957463 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=442

Family Impact During the Time Between Autism Screening and Definitive Diagnosis / Emily J. HICKEY in Journal of Autism and Developmental Disorders, 52-11 (November 2022)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 52-11 (November 2022) . - p.4908-4920 Titre : Family Impact During the Time Between Autism Screening and Definitive Diagnosis Type de document : Texte imprimé et/ou numérique Auteurs : Emily J. HICKEY, Auteur ; Emily FEINBERG, Auteur ; Jocelyn KUHN, Auteur ; Howard J. CABRAL, Auteur ; Sarabeth BRODER-FINGERT, Auteur Article en page(s) : p.4908-4920 Langues : Anglais (eng) Mots-clés : Autism Spectrum Disorder/diagnosis/epidemiology  Autistic Disorder  Child  Child Behavior  Family  Humans  Parents  Autism Spectrum Disorder  Autism risk  Child functioning  Developmental disability  Difficult child behavior  Family impact Index. décimale : PER Périodiques Résumé : Over the past 10 years, identification of Autism Spectrum Disorder (ASD) risk has dramatically increased due to the wide-spread implementation of screening programs; yet, there is limited understanding about parent perceptions and experiences during the time period when risk is identified, but prior to receiving a formal diagnosis-a period that can last months to years given the long wait-lists for formal ASD evaluations. The current study aimed to examine parent perceptions of family impact (i.e., the impact their child's behaviors have on the family) between the time of risk-identification and formal diagnosis among 277 children identified as at-risk for ASD through screening positive in primary care. We aimed to compare family impact among those whose child met diagnostic criteria for ASD and those who did not. Parents of children who received a non-ASD diagnosis reported a higher baseline level of family impact (F[1, 274]=5.82, p=.017); however, perceived difficult child behavior was a stronger predictor of family impact (t[6]=13.11, p < .001) than later diagnostic group (t[6]=- 2.10, p=.037), and child functioning did not predict family impact (t[6]=-0.31, p=.76). These results suggest that in this population, perceived difficult child behavior is a stronger predictor of family impact than later diagnostic category and should be considered an important factor in family support. En ligne : http://dx.doi.org/10.1007/s10803-021-05354-5 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=489 [article] Family Impact During the Time Between Autism Screening and Definitive Diagnosis [Texte imprimé et/ou numérique] / Emily J. HICKEY, Auteur ; Emily FEINBERG, Auteur ; Jocelyn KUHN, Auteur ; Howard J. CABRAL, Auteur ; Sarabeth BRODER-FINGERT, Auteur . - p.4908-4920. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 52-11 (November 2022) . - p.4908-4920 Mots-clés : Autism Spectrum Disorder/diagnosis/epidemiology  Autistic Disorder  Child  Child Behavior  Family  Humans  Parents  Autism Spectrum Disorder  Autism risk  Child functioning  Developmental disability  Difficult child behavior  Family impact Index. décimale : PER Périodiques Résumé : Over the past 10 years, identification of Autism Spectrum Disorder (ASD) risk has dramatically increased due to the wide-spread implementation of screening programs; yet, there is limited understanding about parent perceptions and experiences during the time period when risk is identified, but prior to receiving a formal diagnosis-a period that can last months to years given the long wait-lists for formal ASD evaluations. The current study aimed to examine parent perceptions of family impact (i.e., the impact their child's behaviors have on the family) between the time of risk-identification and formal diagnosis among 277 children identified as at-risk for ASD through screening positive in primary care. We aimed to compare family impact among those whose child met diagnostic criteria for ASD and those who did not. Parents of children who received a non-ASD diagnosis reported a higher baseline level of family impact (F[1, 274]=5.82, p=.017); however, perceived difficult child behavior was a stronger predictor of family impact (t[6]=13.11, p < .001) than later diagnostic group (t[6]=- 2.10, p=.037), and child functioning did not predict family impact (t[6]=-0.31, p=.76). These results suggest that in this population, perceived difficult child behavior is a stronger predictor of family impact than later diagnostic category and should be considered an important factor in family support. En ligne : http://dx.doi.org/10.1007/s10803-021-05354-5 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=489

Implementation of a multi-family autism transition program in the high school setting / Jocelyn KUHN in Autism, 26-3 (April 2022)  

Public ISBD [article]  inAutism > 26-3 (April 2022) . - p.615-627 Titre : Implementation of a multi-family autism transition program in the high school setting Type de document : Texte imprimé et/ou numérique Auteurs : Jocelyn KUHN, Auteur ; Kate SZIDON, Auteur ; Bonnie KRAEMER, Auteur ; Jessica R. STEINBRENNER, Auteur ; Brianne TOMASZEWSKI, Auteur ; Kara HUME, Auteur ; Leann S. DAWALT, Auteur Article en page(s) : p.615-627 Langues : Anglais (eng) Mots-clés : Adolescent  Adult  Autism Spectrum Disorder/therapy  Autistic Disorder  Humans  Problem Solving  Schools  autism spectrum disorders  barriers  facilitators  families  high schools  intervention implementation  transition to adulthood Index. décimale : PER Périodiques Résumé : Transitioning Together is an intervention that supports families of adolescents on the autism spectrum as they prepare for the transition to adulthood. While it has been delivered successfully and shown to result in positive outcomes for families in the university setting, questions remain about whether and how well it can be widely provided to families in real-world settings such as high schools. In this study, we analyzed predictors, facilitators, and barriers to providing Transitioning Together to families at 30 high schools across three US states, all of which received training from a team of researchers to deliver this intervention. Our findings highlight struggles and successes with real-world use of the intervention. Seventeen of the 30 schools were successful in providing Transitioning Together to families. Schools who had higher community socioeconomic status, higher quality family involvement, and higher quality transition planning programming before changing anything for this study were much more likely to provide this new intervention to families. Schools who used the intervention were mostly able to deliver it as designed and received positive feedback from families who participated. Common parts of the intervention that schools struggled with most included following the structure of the sessions, including group problem-solving and dialogue in the sessions, and collecting feedback from families. Future research is needed to learn how to make it even easier for public high schools and other service systems to provide this intervention to families, in a way that also maximizes its effectiveness and accessibility for historically underserved autism spectrum populations. En ligne : https://dx.doi.org/10.1177/13623613211065533 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=473 [article] Implementation of a multi-family autism transition program in the high school setting [Texte imprimé et/ou numérique] / Jocelyn KUHN, Auteur ; Kate SZIDON, Auteur ; Bonnie KRAEMER, Auteur ; Jessica R. STEINBRENNER, Auteur ; Brianne TOMASZEWSKI, Auteur ; Kara HUME, Auteur ; Leann S. DAWALT, Auteur . - p.615-627. Langues : Anglais (eng) in Autism > 26-3 (April 2022) . - p.615-627 Mots-clés : Adolescent  Adult  Autism Spectrum Disorder/therapy  Autistic Disorder  Humans  Problem Solving  Schools  autism spectrum disorders  barriers  facilitators  families  high schools  intervention implementation  transition to adulthood Index. décimale : PER Périodiques Résumé : Transitioning Together is an intervention that supports families of adolescents on the autism spectrum as they prepare for the transition to adulthood. While it has been delivered successfully and shown to result in positive outcomes for families in the university setting, questions remain about whether and how well it can be widely provided to families in real-world settings such as high schools. In this study, we analyzed predictors, facilitators, and barriers to providing Transitioning Together to families at 30 high schools across three US states, all of which received training from a team of researchers to deliver this intervention. Our findings highlight struggles and successes with real-world use of the intervention. Seventeen of the 30 schools were successful in providing Transitioning Together to families. Schools who had higher community socioeconomic status, higher quality family involvement, and higher quality transition planning programming before changing anything for this study were much more likely to provide this new intervention to families. Schools who used the intervention were mostly able to deliver it as designed and received positive feedback from families who participated. Common parts of the intervention that schools struggled with most included following the structure of the sessions, including group problem-solving and dialogue in the sessions, and collecting feedback from families. Future research is needed to learn how to make it even easier for public high schools and other service systems to provide this intervention to families, in a way that also maximizes its effectiveness and accessibility for historically underserved autism spectrum populations. En ligne : https://dx.doi.org/10.1177/13623613211065533 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=473

A method for defining the CORE of a psychosocial intervention to guide adaptation in practice: Reciprocal imitation teaching as a case example / Sarah R. EDMUNDS in Autism, 26-3 (April 2022)  

Public ISBD [article]  inAutism > 26-3 (April 2022) . - p.601-614 Titre : A method for defining the CORE of a psychosocial intervention to guide adaptation in practice: Reciprocal imitation teaching as a case example Type de document : Texte imprimé et/ou numérique Auteurs : Sarah R. EDMUNDS, Auteur ; Kyle M. FROST, Auteur ; R. Chris SHELDRICK, Auteur ; Alice BRAVO, Auteur ; Diondra STRAITON, Auteur ; Katherine PICKARD, Auteur ; Valerie GRIM, Auteur ; Amy DRAHOTA, Auteur ; Jocelyn KUHN, Auteur ; Gazi AZAD, Auteur ; Anamiguel POMALES RAMOS, Auteur ; Brooke R. INGERSOLL, Auteur ; Allison L. WAINER, Auteur ; Lisa V. IBANEZ, Auteur ; Wendy L. STONE, Auteur ; Alice CARTER, Auteur ; Sarabeth BRODER-FINGERT, Auteur Article en page(s) : p.601-614 Langues : Anglais (eng) Mots-clés : Autism Spectrum Disorder  Child  Child, Preschool  Communication  Humans  Imitative Behavior  Parents/psychology  Psychosocial Intervention  autism spectrum disorders  implementation science  intervention fidelity  interventions?psychosocial/behavioral  social cognition and social behavior Index. décimale : PER Périodiques Résumé : Interventions that support social communication include several "components," or parts (e.g. strategies for working with children and families, targeting specific skills). Some of these components may be essential for the intervention to work, while others may be recommended or viewed as helpful but not necessary for the intervention to work. "Recommended" components are often described as "adaptable" because they can be changed to improve fit in different settings where interventions are offered or with different individuals. We need to understand which parts of an intervention are essential (and which are adaptable) when translating interventions from research to community settings, but it is challenging to do this before studying an intervention in the community. This article presents the CORE (COmponents & Rationales for Effectiveness) Fidelity Method-a new method for defining the essential components of evidence-based interventions-and applies it to a case example of Reciprocal Imitation Teaching, an intervention that parents are taught to deliver with their young children with social communication delays. The CORE Fidelity Method involves three steps: (1) gathering information from multiple sources; (2) integrating information from previous research and theory; and (3) drafting a CORE model for ongoing use. The benefits of using the CORE Fidelity Method may include: (1) improving consistency in intervention and research materials to help all providers emphasize the most important skills or strategies; (2) clarifying which parts of the intervention can be adapted; and (3) supporting future research that evaluates which intervention components work and how they work. En ligne : https://dx.doi.org/10.1177/13623613211064431 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=473 [article] A method for defining the CORE of a psychosocial intervention to guide adaptation in practice: Reciprocal imitation teaching as a case example [Texte imprimé et/ou numérique] / Sarah R. EDMUNDS, Auteur ; Kyle M. FROST, Auteur ; R. Chris SHELDRICK, Auteur ; Alice BRAVO, Auteur ; Diondra STRAITON, Auteur ; Katherine PICKARD, Auteur ; Valerie GRIM, Auteur ; Amy DRAHOTA, Auteur ; Jocelyn KUHN, Auteur ; Gazi AZAD, Auteur ; Anamiguel POMALES RAMOS, Auteur ; Brooke R. INGERSOLL, Auteur ; Allison L. WAINER, Auteur ; Lisa V. IBANEZ, Auteur ; Wendy L. STONE, Auteur ; Alice CARTER, Auteur ; Sarabeth BRODER-FINGERT, Auteur . - p.601-614. Langues : Anglais (eng) in Autism > 26-3 (April 2022) . - p.601-614 Mots-clés : Autism Spectrum Disorder  Child  Child, Preschool  Communication  Humans  Imitative Behavior  Parents/psychology  Psychosocial Intervention  autism spectrum disorders  implementation science  intervention fidelity  interventions?psychosocial/behavioral  social cognition and social behavior Index. décimale : PER Périodiques Résumé : Interventions that support social communication include several "components," or parts (e.g. strategies for working with children and families, targeting specific skills). Some of these components may be essential for the intervention to work, while others may be recommended or viewed as helpful but not necessary for the intervention to work. "Recommended" components are often described as "adaptable" because they can be changed to improve fit in different settings where interventions are offered or with different individuals. We need to understand which parts of an intervention are essential (and which are adaptable) when translating interventions from research to community settings, but it is challenging to do this before studying an intervention in the community. This article presents the CORE (COmponents & Rationales for Effectiveness) Fidelity Method-a new method for defining the essential components of evidence-based interventions-and applies it to a case example of Reciprocal Imitation Teaching, an intervention that parents are taught to deliver with their young children with social communication delays. The CORE Fidelity Method involves three steps: (1) gathering information from multiple sources; (2) integrating information from previous research and theory; and (3) drafting a CORE model for ongoing use. The benefits of using the CORE Fidelity Method may include: (1) improving consistency in intervention and research materials to help all providers emphasize the most important skills or strategies; (2) clarifying which parts of the intervention can be adapted; and (3) supporting future research that evaluates which intervention components work and how they work. En ligne : https://dx.doi.org/10.1177/13623613211064431 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=473

Parent stress and coping trajectories in Hispanic and non-Hispanic families of children at risk of autism spectrum disorder / Emily J. HICKEY in Autism, 26-6 (August 2022)  

Public ISBD [article]  inAutism > 26-6 (August 2022) . - p.1694-1708 Titre : Parent stress and coping trajectories in Hispanic and non-Hispanic families of children at risk of autism spectrum disorder Type de document : Texte imprimé et/ou numérique Auteurs : Emily J. HICKEY, Auteur ; Michelle STRANSKY, Auteur ; Jocelyn KUHN, Auteur ; Jessica E. ROSENBERG, Auteur ; Howard J. CABRAL, Auteur ; Carol WEITZMAN, Auteur ; Sarabeth BRODER-FINGERT, Auteur ; Emily FEINBERG, Auteur Article en page(s) : p.1694-1708 Langues : Anglais (eng) Mots-clés : Adaptation, Psychological  Autism Spectrum Disorder  Child  Humans  Parenting  Parents  Stress, Psychological  autism risk  autism spectrum disorders  coping  developmental disabilities  family impact  parenting stress  trajectories Index. décimale : PER Périodiques Résumé : Little is known about parent experiences throughout the diagnostic process for autism or how these parent experiences may help explain the disparities that exist between Hispanic and non-Hispanic families in time-to-diagnosis among children identified as at risk for autism. The current study examined trajectories of parenting stress, coping, and perceived family impact over time, throughout the autism diagnostic process among Hispanic and non-Hispanic families. Hispanic families reported lower levels of parenting stress, coping, and negative family impact across time. Further, there were differences in the change in use of coping and the amount of negative family impact reported between Hispanic and non-Hispanic parents over time. These differences shed light on the unique experiences and strengths of Hispanic families demonstrate. Interventions that leverage those strengths and focus on education, empowerment, and resilience might be particularly beneficial for Hispanic families and may also better inform work to increase resilience. En ligne : http://dx.doi.org/10.1177/13623613211001611 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=484 [article] Parent stress and coping trajectories in Hispanic and non-Hispanic families of children at risk of autism spectrum disorder [Texte imprimé et/ou numérique] / Emily J. HICKEY, Auteur ; Michelle STRANSKY, Auteur ; Jocelyn KUHN, Auteur ; Jessica E. ROSENBERG, Auteur ; Howard J. CABRAL, Auteur ; Carol WEITZMAN, Auteur ; Sarabeth BRODER-FINGERT, Auteur ; Emily FEINBERG, Auteur . - p.1694-1708. Langues : Anglais (eng) in Autism > 26-6 (August 2022) . - p.1694-1708 Mots-clés : Adaptation, Psychological  Autism Spectrum Disorder  Child  Humans  Parenting  Parents  Stress, Psychological  autism risk  autism spectrum disorders  coping  developmental disabilities  family impact  parenting stress  trajectories Index. décimale : PER Périodiques Résumé : Little is known about parent experiences throughout the diagnostic process for autism or how these parent experiences may help explain the disparities that exist between Hispanic and non-Hispanic families in time-to-diagnosis among children identified as at risk for autism. The current study examined trajectories of parenting stress, coping, and perceived family impact over time, throughout the autism diagnostic process among Hispanic and non-Hispanic families. Hispanic families reported lower levels of parenting stress, coping, and negative family impact across time. Further, there were differences in the change in use of coping and the amount of negative family impact reported between Hispanic and non-Hispanic parents over time. These differences shed light on the unique experiences and strengths of Hispanic families demonstrate. Interventions that leverage those strengths and focus on education, empowerment, and resilience might be particularly beneficial for Hispanic families and may also better inform work to increase resilience. En ligne : http://dx.doi.org/10.1177/13623613211001611 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=484

Patterns of intervention utilization among school-aged children on the autism spectrum: Findings from a multi-site research consortium / Aksheya SRIDHAR in Research in Autism Spectrum Disorders, 94 (June 2022)  

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Reinvigorating the Promise of the National Database for Autism Research (NDAR) to Advance Autism Knowledge / Michelle L. Stransky ; Laneva Cobb ; Nina Menon ; Emily Barnard ; Cynthia Belfleur ; Lawrence SCAHILL ; Jocelyn KUHN in Journal of Autism and Developmental Disorders, 55-1 (January 2025)  

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The influence of loss to follow-up in autism screening research: Taking stock and moving forward / R. Christopher SHELDRICK in Journal of Child Psychology and Psychiatry, 65-5 (May 2024)  

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