Addressing current barriers to autism diagnoses through a tiered diagnostic approach involving pediatric primary care providers / Andrea TRUBANOVA WIECKOWSKI in Autism Research, 15-12 (December 2022)  

Public ISBD [article]  inAutism Research > 15-12 (December 2022) . - p.2216-2222 Titre : Addressing current barriers to autism diagnoses through a tiered diagnostic approach involving pediatric primary care providers Type de document : texte imprimé Auteurs : Andrea TRUBANOVA WIECKOWSKI, Auteur ; Katharine E. ZUCKERMAN, Auteur ; Sarabeth BRODER-FINGERT, Auteur ; Diana L. ROBINS, Auteur Article en page(s) : p.2216-2222 Langues : Anglais (eng) Mots-clés : Child  Humans  Child, Preschool  Autistic Disorder  Autism Spectrum Disorder/diagnosis/therapy  Primary Health Care  autism spectrum disorder  diagnosis  early detection  primary care Index. décimale : PER Périodiques Résumé : Formal autism diagnosis from a specialist trained in autism assessment is customary prior to a child accessing early, intensive autism-specific services. However, long wait lists for diagnostic evaluations and limited specialty workforce have created substantial delays. Additionally, lengthy multidisciplinary evaluations are costly to insurers, inconvenient to families, and disproportionally impact under-resourced families. Diagnostic delays can impede access to intervention services. These barriers, combined with evidence regarding the importance of receiving early, autism-specific treatment, demand new approaches enabling access to autism specific services before comprehensive evaluation. Pediatric primary care providers (PCPs) are often the only health care professionals with whom a family interacts during early childhood and can play a crucial role in helping children with autism symptoms access services. Many strategies for autism diagnosis in primary care are being developed and tested; however, they have yet to be broadly adopted by PCPs, primarily due to critical implementation barriers in primary care settings. There is also not enough evidence on the accuracy of PCPs' diagnostic impressions without extensive specialty support, resulting in PCP hesitancy in diagnosing ASD, as well as family and service provider hesitancy in accepting a PCP autism diagnosis. In this commentary, we explore the acute need for shortening waitlists for autism evaluations through a tiered diagnostic approach, in which PCPs can rule in or rule out autism in children, for whom diagnosis is clear, and refer more complex cases for specialist evaluations, and explore implementation challenges to this approach. En ligne : http://dx.doi.org/10.1002/aur.2832 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=488 [article] Addressing current barriers to autism diagnoses through a tiered diagnostic approach involving pediatric primary care providers [texte imprimé] / Andrea TRUBANOVA WIECKOWSKI, Auteur ; Katharine E. ZUCKERMAN, Auteur ; Sarabeth BRODER-FINGERT, Auteur ; Diana L. ROBINS, Auteur . - p.2216-2222. Langues : Anglais (eng) in Autism Research > 15-12 (December 2022) . - p.2216-2222 Mots-clés : Child  Humans  Child, Preschool  Autistic Disorder  Autism Spectrum Disorder/diagnosis/therapy  Primary Health Care  autism spectrum disorder  diagnosis  early detection  primary care Index. décimale : PER Périodiques Résumé : Formal autism diagnosis from a specialist trained in autism assessment is customary prior to a child accessing early, intensive autism-specific services. However, long wait lists for diagnostic evaluations and limited specialty workforce have created substantial delays. Additionally, lengthy multidisciplinary evaluations are costly to insurers, inconvenient to families, and disproportionally impact under-resourced families. Diagnostic delays can impede access to intervention services. These barriers, combined with evidence regarding the importance of receiving early, autism-specific treatment, demand new approaches enabling access to autism specific services before comprehensive evaluation. Pediatric primary care providers (PCPs) are often the only health care professionals with whom a family interacts during early childhood and can play a crucial role in helping children with autism symptoms access services. Many strategies for autism diagnosis in primary care are being developed and tested; however, they have yet to be broadly adopted by PCPs, primarily due to critical implementation barriers in primary care settings. There is also not enough evidence on the accuracy of PCPs' diagnostic impressions without extensive specialty support, resulting in PCP hesitancy in diagnosing ASD, as well as family and service provider hesitancy in accepting a PCP autism diagnosis. In this commentary, we explore the acute need for shortening waitlists for autism evaluations through a tiered diagnostic approach, in which PCPs can rule in or rule out autism in children, for whom diagnosis is clear, and refer more complex cases for specialist evaluations, and explore implementation challenges to this approach. En ligne : http://dx.doi.org/10.1002/aur.2832 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=488

Applying a User-Centered Design Framework to Develop a Remote Research Assessment Protocol for a Randomized Clinical Trial for Toddlers with Early Autism Characteristics / Daina M. TAGAVI in Journal of Autism and Developmental Disorders, 55-10 (October 2025)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 55-10 (October 2025) . - p.3417-3431 Titre : Applying a User-Centered Design Framework to Develop a Remote Research Assessment Protocol for a Randomized Clinical Trial for Toddlers with Early Autism Characteristics Type de document : texte imprimé Auteurs : Daina M. TAGAVI, Auteur ; Yael G. DAI, Auteur ; Natalie I. BERGER, Auteur ; Marisa PETRUCCELLI, Auteur ; Sabine E. SCOTT, Auteur ; Devon OOSTING, Auteur ; Mya HOWARD, Auteur ; Alice S. CARTER, Auteur ; Brooke INGERSOLL, Auteur ; Allison L. WAINER, Auteur ; Sarabeth BRODER-FINGERT, Auteur ; Wendy L. STONE, Auteur Article en page(s) : p.3417-3431 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : COVID-19 required many research teams to shift from in-person to remote assessments, which posed both procedural and theoretical challenges. While research has explored the utility of remote assessments for autism diagnosis from the perspective of families and clinicians, less is known about their application in clinical trials. This paper describes the development of a remote research assessment protocol for a randomized clinical trial focusing on the implementation of reciprocal imitation teaching (RIT) with toddlers in Part C early intervention. This project spans two phases. For Phase 1, our team developed and documented a series of steps utilizing user-centered design (UCD) strategies (e.g., recruiting potential users, creating a prototype, engaging in iterative development) for the purpose of redesigning an assessment protocol for a remote environment. For Phase 2, we examined preliminary outcomes of the redesign process. Primary end users (assessors) rated post-redesign usability and acceptability, while acceptability was examined using attrition data from secondary end users (family participants). Preliminary fidelity of implementation was also examined. The iterative redesign process allowed the research team to refine aspects of the assessment that ultimately led to promising preliminary ratings of usability, acceptability, and feasibility, as well as high fidelity. Preliminary data suggest that the redesigned assessment appears to be an acceptable, feasible, and usable tool for autism clinical trial research and that assessors can use it with fidelity. Further research is needed to examine the reliability and validity of the assessment, as well as implementation characteristics on a larger scale. En ligne : https://doi.org/10.1007/s10803-024-06455-7 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=568 [article] Applying a User-Centered Design Framework to Develop a Remote Research Assessment Protocol for a Randomized Clinical Trial for Toddlers with Early Autism Characteristics [texte imprimé] / Daina M. TAGAVI, Auteur ; Yael G. DAI, Auteur ; Natalie I. BERGER, Auteur ; Marisa PETRUCCELLI, Auteur ; Sabine E. SCOTT, Auteur ; Devon OOSTING, Auteur ; Mya HOWARD, Auteur ; Alice S. CARTER, Auteur ; Brooke INGERSOLL, Auteur ; Allison L. WAINER, Auteur ; Sarabeth BRODER-FINGERT, Auteur ; Wendy L. STONE, Auteur . - p.3417-3431. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 55-10 (October 2025) . - p.3417-3431 Index. décimale : PER Périodiques Résumé : COVID-19 required many research teams to shift from in-person to remote assessments, which posed both procedural and theoretical challenges. While research has explored the utility of remote assessments for autism diagnosis from the perspective of families and clinicians, less is known about their application in clinical trials. This paper describes the development of a remote research assessment protocol for a randomized clinical trial focusing on the implementation of reciprocal imitation teaching (RIT) with toddlers in Part C early intervention. This project spans two phases. For Phase 1, our team developed and documented a series of steps utilizing user-centered design (UCD) strategies (e.g., recruiting potential users, creating a prototype, engaging in iterative development) for the purpose of redesigning an assessment protocol for a remote environment. For Phase 2, we examined preliminary outcomes of the redesign process. Primary end users (assessors) rated post-redesign usability and acceptability, while acceptability was examined using attrition data from secondary end users (family participants). Preliminary fidelity of implementation was also examined. The iterative redesign process allowed the research team to refine aspects of the assessment that ultimately led to promising preliminary ratings of usability, acceptability, and feasibility, as well as high fidelity. Preliminary data suggest that the redesigned assessment appears to be an acceptable, feasible, and usable tool for autism clinical trial research and that assessors can use it with fidelity. Further research is needed to examine the reliability and validity of the assessment, as well as implementation characteristics on a larger scale. En ligne : https://doi.org/10.1007/s10803-024-06455-7 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=568

Brief Report: Emergency Department Utilization by Individuals with Autism / Dorothea A. IANNUZZI in Journal of Autism and Developmental Disorders, 45-4 (April 2015)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 45-4 (April 2015) . - p.1096-1102 Titre : Brief Report: Emergency Department Utilization by Individuals with Autism Type de document : texte imprimé Auteurs : Dorothea A. IANNUZZI, Auteur ; Erika R. CHENG, Auteur ; Sarabeth BRODER-FINGERT, Auteur ; Margaret L. BAUMAN, Auteur Article en page(s) : p.1096-1102 Langues : Anglais (eng) Mots-clés : Emergency department (ED)  Autism  (ASD)  Seizure  Epilepsy  Psychiatric  Self-injurious behavior Index. décimale : PER Périodiques Résumé : To identify medical problems most commonly presenting to emergency departments among individuals with autism as compared to non-autistic persons across age groups. Data was obtained from the 2010 National Emergency Department database and was analyzed by age categories: 3–5, 6–11, 12–15, 16–18 and 19 years and older. Epilepsy emerged as the leading presenting diagnosis among those with Autism spectrum disorder (ASD), ages 16–19 years and 19 over. Psychiatric conditions were primary among ASD individuals aged 12–15 years, accounting for more than 11 % of all visits. In this sample, age-related differences were noted in medical diagnoses among autistic individuals as compared to non-autistic persons. En ligne : http://dx.doi.org/10.1007/s10803-014-2251-2 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=258 [article] Brief Report: Emergency Department Utilization by Individuals with Autism [texte imprimé] / Dorothea A. IANNUZZI, Auteur ; Erika R. CHENG, Auteur ; Sarabeth BRODER-FINGERT, Auteur ; Margaret L. BAUMAN, Auteur . - p.1096-1102. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 45-4 (April 2015) . - p.1096-1102 Mots-clés : Emergency department (ED)  Autism  (ASD)  Seizure  Epilepsy  Psychiatric  Self-injurious behavior Index. décimale : PER Périodiques Résumé : To identify medical problems most commonly presenting to emergency departments among individuals with autism as compared to non-autistic persons across age groups. Data was obtained from the 2010 National Emergency Department database and was analyzed by age categories: 3–5, 6–11, 12–15, 16–18 and 19 years and older. Epilepsy emerged as the leading presenting diagnosis among those with Autism spectrum disorder (ASD), ages 16–19 years and 19 over. Psychiatric conditions were primary among ASD individuals aged 12–15 years, accounting for more than 11 % of all visits. In this sample, age-related differences were noted in medical diagnoses among autistic individuals as compared to non-autistic persons. En ligne : http://dx.doi.org/10.1007/s10803-014-2251-2 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=258

Brief Report: Meeting the Needs of Medically Hospitalized Adults with Autism: A Provider and Patient Toolkit / Jocelyn CARTER in Journal of Autism and Developmental Disorders, 47-5 (May 2017)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 47-5 (May 2017) . - p.1510-1529 Titre : Brief Report: Meeting the Needs of Medically Hospitalized Adults with Autism: A Provider and Patient Toolkit Type de document : texte imprimé Auteurs : Jocelyn CARTER, Auteur ; Sarabeth BRODER-FINGERT, Auteur ; Ann NEUMEYER, Auteur ; Ann GIAUQUE, Auteur ; Ann KAO, Auteur ; Christiana IYASERE, Auteur Article en page(s) : p.1510-1529 Langues : Anglais (eng) Mots-clés : Autism  ASD  Inpatient  Hospitalization  Autism educational tools Index. décimale : PER Périodiques Résumé : In an effort to meet the needs of adults with autism spectrum disorder (ASD) while hospitalized, a team of experts and providers from Massachusetts General Hospital (MGH), MGH for Children as well as parents of individuals with ASD was sparked in 2013. This became a multidisciplinary collaborative, the MGH Autism Care Collaborative, to improve adult care for inpatients with ASD. The collaborative was created with three goals in mind: (1) to educate internal medicine adult inpatient providers and staff on the unique needs of adults with ASD when hospitalized; (2) to create ASD specific resources for internal medicine adult inpatient providers; (3) to optimize patient care from admission to discharge among adults with ASD admitted to internal medicine services. En ligne : http://dx.doi.org/10.1007/s10803-017-3040-5 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=305 [article] Brief Report: Meeting the Needs of Medically Hospitalized Adults with Autism: A Provider and Patient Toolkit [texte imprimé] / Jocelyn CARTER, Auteur ; Sarabeth BRODER-FINGERT, Auteur ; Ann NEUMEYER, Auteur ; Ann GIAUQUE, Auteur ; Ann KAO, Auteur ; Christiana IYASERE, Auteur . - p.1510-1529. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 47-5 (May 2017) . - p.1510-1529 Mots-clés : Autism  ASD  Inpatient  Hospitalization  Autism educational tools Index. décimale : PER Périodiques Résumé : In an effort to meet the needs of adults with autism spectrum disorder (ASD) while hospitalized, a team of experts and providers from Massachusetts General Hospital (MGH), MGH for Children as well as parents of individuals with ASD was sparked in 2013. This became a multidisciplinary collaborative, the MGH Autism Care Collaborative, to improve adult care for inpatients with ASD. The collaborative was created with three goals in mind: (1) to educate internal medicine adult inpatient providers and staff on the unique needs of adults with ASD when hospitalized; (2) to create ASD specific resources for internal medicine adult inpatient providers; (3) to optimize patient care from admission to discharge among adults with ASD admitted to internal medicine services. En ligne : http://dx.doi.org/10.1007/s10803-017-3040-5 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=305

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 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] / 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

Defining the core components of Family Navigation for autism spectrum disorder / Sarabeth BRODER-FINGERT in Autism, 24-2 (February 2020)  

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Emergency Department Utilization of Adolescents and Young Adults with Autism Spectrum Disorder / D. IANNUZZI in Journal of Autism and Developmental Disorders, 52-2 (February 2022)  

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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)  

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Implementing systems-based innovations to improve access to early screening, diagnosis, and treatment services for children with autism spectrum disorder: An Autism Spectrum Disorder Pediatric, Early Detection, Engagement, and Services network study / Sarabeth BRODER-FINGERT in Autism, 23-3 (April 2019)  

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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)  

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A mixed-methods process evaluation of Family Navigation implementation for autism spectrum disorder / Sarabeth BRODER-FINGERT in Autism, 23-5 (July 2019)  

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Mobile and online consumer tools to screen for autism do not promote equity / Benjamin W SANDERS in Autism, 27-3 (April 2023)  

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Overcoming tensions between family-centered care and fidelity within Early Intervention implementation research / Katherine PICKARD in Autism, 27-3 (April 2023)  

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Parent stress and coping trajectories in Hispanic and non-Hispanic families of children at risk of autism spectrum disorder / E. J. HICKEY in Autism, 25-6 (August 2021)  

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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)  

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