Assessing the Minimally Verbal School-Aged Child With Autism Spectrum Disorder / Connie KASARI in Autism Research, 6-6 (December 2013)  

Public ISBD [article]  inAutism Research > 6-6 (December 2013) . - p.479-493 Titre : Assessing the Minimally Verbal School-Aged Child With Autism Spectrum Disorder Type de document : texte imprimé Auteurs : Connie KASARI, Auteur ; Nancy C. BRADY, Auteur ; Catherine LORD, Auteur ; Helen TAGER-FLUSBERG, Auteur Année de publication : 2013 Article en page(s) : p.479-493 Langues : Anglais (eng) Mots-clés : minimally verbal  school-aged children  assessment  communication Index. décimale : PER Périodiques Résumé : This paper addresses the issue of assessing communication, language, and associated cognitive and behavioral abilities of minimally verbal children with autism spectrum disorder (ASD), presenting a summary of a year-long series of meetings held by a group of experts in the field of ASD and National Institutes of Health staff. In this paper, our goals were to first define the population and then present general guidelines for optimizing assessment sessions for this challenging population. We then summarize the available measures that can be used across a variety of behavioral domains that are most directly relevant to developing language skills, including oral motor skills, vocal repertoire, receptive and expressive language, imitation, intentional communication, play, social behavior, repetitive and sensory behaviors, and nonverbal cognition. We conclude with a discussion of some of the limitations in the available measures and highlight recommendations for future research in this area. En ligne : http://dx.doi.org/10.1002/aur.1334 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=221 [article] Assessing the Minimally Verbal School-Aged Child With Autism Spectrum Disorder [texte imprimé] / Connie KASARI, Auteur ; Nancy C. BRADY, Auteur ; Catherine LORD, Auteur ; Helen TAGER-FLUSBERG, Auteur . - 2013 . - p.479-493. Langues : Anglais (eng) in Autism Research > 6-6 (December 2013) . - p.479-493 Mots-clés : minimally verbal  school-aged children  assessment  communication Index. décimale : PER Périodiques Résumé : This paper addresses the issue of assessing communication, language, and associated cognitive and behavioral abilities of minimally verbal children with autism spectrum disorder (ASD), presenting a summary of a year-long series of meetings held by a group of experts in the field of ASD and National Institutes of Health staff. In this paper, our goals were to first define the population and then present general guidelines for optimizing assessment sessions for this challenging population. We then summarize the available measures that can be used across a variety of behavioral domains that are most directly relevant to developing language skills, including oral motor skills, vocal repertoire, receptive and expressive language, imitation, intentional communication, play, social behavior, repetitive and sensory behaviors, and nonverbal cognition. We conclude with a discussion of some of the limitations in the available measures and highlight recommendations for future research in this area. En ligne : http://dx.doi.org/10.1002/aur.1334 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=221

Change in Behavior Problems from Childhood Through Adolescence for Children with Fragile X Syndrome / Leann S. DAWALT in Journal of Autism and Developmental Disorders, 52-9 (September 2022)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 52-9 (September 2022) . - p.4056-4066 Titre : Change in Behavior Problems from Childhood Through Adolescence for Children with Fragile X Syndrome Type de document : texte imprimé Auteurs : Leann S. DAWALT, Auteur ; Heather FIELDING-GEBHARDT, Auteur ; Kandace K. FLEMING, Auteur ; Steven F. WARREN, Auteur ; Nancy C. BRADY, Auteur Article en page(s) : p.4056-4066 Langues : Anglais (eng) Mots-clés : Adolescent  Anxiety  Autism Spectrum Disorder  Child  Female  Fragile X Syndrome  Humans  Mothers  Parenting  Adolescence  Autism  Behavior problems  Fragile X syndrome Index. décimale : PER Périodiques Résumé : In this study, we examined trajectories of specific domains of behavior problems (i.e., attention problems, depression/anxiety, and aggressive behavior) from age 6 to 18 in a sample of 55 children with fragile X syndrome. We also examined autism status and early parenting as predictors of subsequent behavioral trajectories. We found that attention problems and aggressive behavior declined steadily from childhood through adolescence whereas anxious/depressed behavior demonstrated relative stability over the same period. Youth with highly flexible mothers displayed more optional trajectories of improvement in attention problems. En ligne : http://dx.doi.org/10.1007/s10803-021-05270-8 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=485 [article] Change in Behavior Problems from Childhood Through Adolescence for Children with Fragile X Syndrome [texte imprimé] / Leann S. DAWALT, Auteur ; Heather FIELDING-GEBHARDT, Auteur ; Kandace K. FLEMING, Auteur ; Steven F. WARREN, Auteur ; Nancy C. BRADY, Auteur . - p.4056-4066. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 52-9 (September 2022) . - p.4056-4066 Mots-clés : Adolescent  Anxiety  Autism Spectrum Disorder  Child  Female  Fragile X Syndrome  Humans  Mothers  Parenting  Adolescence  Autism  Behavior problems  Fragile X syndrome Index. décimale : PER Périodiques Résumé : In this study, we examined trajectories of specific domains of behavior problems (i.e., attention problems, depression/anxiety, and aggressive behavior) from age 6 to 18 in a sample of 55 children with fragile X syndrome. We also examined autism status and early parenting as predictors of subsequent behavioral trajectories. We found that attention problems and aggressive behavior declined steadily from childhood through adolescence whereas anxious/depressed behavior demonstrated relative stability over the same period. Youth with highly flexible mothers displayed more optional trajectories of improvement in attention problems. En ligne : http://dx.doi.org/10.1007/s10803-021-05270-8 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=485

Child Challenging Behavior Influences Maternal Mental Health and Relationship Quality Over Time in Fragile X Syndrome / Heather FIELDING-GEBHARDT in Journal of Autism and Developmental Disorders, 50-3 (March 2020)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 50-3 (March 2020) . - p.779-797 Titre : Child Challenging Behavior Influences Maternal Mental Health and Relationship Quality Over Time in Fragile X Syndrome Type de document : texte imprimé Auteurs : Heather FIELDING-GEBHARDT, Auteur ; Steven F. WARREN, Auteur ; Nancy C. BRADY, Auteur Article en page(s) : p.779-797 Langues : Anglais (eng) Mots-clés : Challenging behaviors  Fragile X  Mental health  Relationship quality Index. décimale : PER Périodiques Résumé : Parenting children with neurodevelopmental disabilities is often challenging. Biological mothers of children with Fragile X Syndrome (FXS) may be susceptible to increased risk of mental health problems. This study examined the longitudinal relationships between maternal mental health, child challenging behaviors, and mother-child relationship quality in children and adolescents with FXS. Fifty-five mother-child dyads were followed from childhood into adolescence. The findings suggest that child challenging behaviors, maternal mental health, and mother-child relationship quality were stable during that period. Additionally, elevated levels of child challenging behaviors negatively impacted maternal mental health. Finally, child challenging behaviors, in combination with maternal mental health, influenced mother-child relationship quality. Clinical implications are discussed. En ligne : http://dx.doi.org/10.1007/s10803-019-04308-2 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=419 [article] Child Challenging Behavior Influences Maternal Mental Health and Relationship Quality Over Time in Fragile X Syndrome [texte imprimé] / Heather FIELDING-GEBHARDT, Auteur ; Steven F. WARREN, Auteur ; Nancy C. BRADY, Auteur . - p.779-797. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 50-3 (March 2020) . - p.779-797 Mots-clés : Challenging behaviors  Fragile X  Mental health  Relationship quality Index. décimale : PER Périodiques Résumé : Parenting children with neurodevelopmental disabilities is often challenging. Biological mothers of children with Fragile X Syndrome (FXS) may be susceptible to increased risk of mental health problems. This study examined the longitudinal relationships between maternal mental health, child challenging behaviors, and mother-child relationship quality in children and adolescents with FXS. Fifty-five mother-child dyads were followed from childhood into adolescence. The findings suggest that child challenging behaviors, maternal mental health, and mother-child relationship quality were stable during that period. Additionally, elevated levels of child challenging behaviors negatively impacted maternal mental health. Finally, child challenging behaviors, in combination with maternal mental health, influenced mother-child relationship quality. Clinical implications are discussed. En ligne : http://dx.doi.org/10.1007/s10803-019-04308-2 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=419

Development of the Angelman syndrome video assessment: quantifying meaningful change / Kriszha A. SHEEHY in Journal of Neurodevelopmental Disorders, 17 (2025)  

Public ISBD [article]  inJournal of Neurodevelopmental Disorders > 17 (2025) Titre : Development of the Angelman syndrome video assessment: quantifying meaningful change Type de document : texte imprimé Auteurs : Kriszha A. SHEEHY, Auteur ; Mindy G. LEFFLER, Auteur ; Rebecca J. WOODS, Auteur ; Robert KOMOROWSKI, Auteur ; Rebecca CREAN, Auteur ; Christina K. ZIGLER, Auteur ; Jessica DUIS, Auteur ; Olivia BOOROM, Auteur ; Nancy BRADY, Auteur ; Lauren DEVALK, Auteur ; Nicole HARRIS, Auteur ; Amber SAPP, Auteur ; Caroline WOEBER, Auteur ; Anjali SADHWANI, Auteur ; Wen-Hann TAN, Auteur ; ASVA DELPHI PANELISTS, Auteur Langues : Anglais (eng) Mots-clés : Humans  Angelman Syndrome/diagnosis/physiopathology  Activities of Daily Living  Video Recording  Male  Female  Delphi Technique  Child  Caregivers  Communication  Adult  Adolescent  Activities of daily living  Angelman syndrome  Meaningful clinical outcome  Neurodevelopmental  Outcome measure  Patient outcome assessment  Patient-focused drug development  Video assessment  during the ASVA Pilot study, approved by the central Institutional Review Board  IntegReview (Austin, TX) and the ASVA source material study (NCT05637697),  approved by Advarra IRB (Pro00057202). All caregivers were legal guardians who  provided written consent for themselves and subjects and received compensation  for their participation. All participating Delphi panelists signed written  agreements to provide consultant services for the purposes of Delphi panel, and  they were provided with an honorarium for their time. Since panelists provided  expert opinion through consultant services, this was not considered human  subjects research. Consent for publication: Not applicable. Competing interests:  The authors declare no competing interests. Index. décimale : PER Périodiques Résumé : BACKGROUND: The Angelman Syndrome Video Assessment (ASVA) is a clinician-reported outcome measure that was developed to assess the functional ability of individuals with Angelman Syndrome (AS) in a familiar environment. Through standardized tasks and associated scorecards, clinicians assess four meaningful domains of functioning: communication, activities of daily living (ADLs, which include fine motor skills), gross motor, and external direction (i.e., the ability to follow directions) via scorecards with pre-established criteria. The aim of this project was to develop and refine the scorecards using a rigorous process in partnership with caregivers, clinicians, and researchers in the AS community. METHODS: The Scorecard development process included four phases: (1) video source material study, (2) identification of initial scoring criteria, (3) scorecard drafts, and (4) two (Caregiver and Clinician panel and PT panel) two-round modified Delphi processes to reach consensus. All phases were conducted remotely except for Round 2 of the Caregiver and Clinician Delphi Panel, which was conducted in person. Votes were held for each scoring criterion and consensus was defined as ≥ 70% agreement. RESULTS: In the communication, ADLs, and external direction domains, scorecard criteria reached 80 to 100% agreement among caregivers (n = 8) and clinicians (n = 2), resulting in a total of 218 scoring criteria and levels across 10 tasks. In the gross motor domain, scorecard criteria reached 100% agreement among physical therapists (n = 8) with a total of 347 scoring criteria and levels across 8 tasks. CONCLUSIONS: The ASVA was developed with insights from the AS community, including caregivers of individuals with AS, clinicians, and researchers. The ASVA is a novel, disease-specific, clinician-reported outcome measure that uses standardized video capture and scorecards that were developed through a rigorous process, resulting in well-developed criteria to quantify meaningful changes of function in individuals with AS in communication, ADLs, gross motor function, and external direction. En ligne : https://dx.doi.org/10.1186/s11689-025-09655-z Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=576 [article] Development of the Angelman syndrome video assessment: quantifying meaningful change [texte imprimé] / Kriszha A. SHEEHY, Auteur ; Mindy G. LEFFLER, Auteur ; Rebecca J. WOODS, Auteur ; Robert KOMOROWSKI, Auteur ; Rebecca CREAN, Auteur ; Christina K. ZIGLER, Auteur ; Jessica DUIS, Auteur ; Olivia BOOROM, Auteur ; Nancy BRADY, Auteur ; Lauren DEVALK, Auteur ; Nicole HARRIS, Auteur ; Amber SAPP, Auteur ; Caroline WOEBER, Auteur ; Anjali SADHWANI, Auteur ; Wen-Hann TAN, Auteur ; ASVA DELPHI PANELISTS, Auteur. Langues : Anglais (eng) in Journal of Neurodevelopmental Disorders > 17 (2025) Mots-clés : Humans  Angelman Syndrome/diagnosis/physiopathology  Activities of Daily Living  Video Recording  Male  Female  Delphi Technique  Child  Caregivers  Communication  Adult  Adolescent  Activities of daily living  Angelman syndrome  Meaningful clinical outcome  Neurodevelopmental  Outcome measure  Patient outcome assessment  Patient-focused drug development  Video assessment  during the ASVA Pilot study, approved by the central Institutional Review Board  IntegReview (Austin, TX) and the ASVA source material study (NCT05637697),  approved by Advarra IRB (Pro00057202). All caregivers were legal guardians who  provided written consent for themselves and subjects and received compensation  for their participation. All participating Delphi panelists signed written  agreements to provide consultant services for the purposes of Delphi panel, and  they were provided with an honorarium for their time. Since panelists provided  expert opinion through consultant services, this was not considered human  subjects research. Consent for publication: Not applicable. Competing interests:  The authors declare no competing interests. Index. décimale : PER Périodiques Résumé : BACKGROUND: The Angelman Syndrome Video Assessment (ASVA) is a clinician-reported outcome measure that was developed to assess the functional ability of individuals with Angelman Syndrome (AS) in a familiar environment. Through standardized tasks and associated scorecards, clinicians assess four meaningful domains of functioning: communication, activities of daily living (ADLs, which include fine motor skills), gross motor, and external direction (i.e., the ability to follow directions) via scorecards with pre-established criteria. The aim of this project was to develop and refine the scorecards using a rigorous process in partnership with caregivers, clinicians, and researchers in the AS community. METHODS: The Scorecard development process included four phases: (1) video source material study, (2) identification of initial scoring criteria, (3) scorecard drafts, and (4) two (Caregiver and Clinician panel and PT panel) two-round modified Delphi processes to reach consensus. All phases were conducted remotely except for Round 2 of the Caregiver and Clinician Delphi Panel, which was conducted in person. Votes were held for each scoring criterion and consensus was defined as ≥ 70% agreement. RESULTS: In the communication, ADLs, and external direction domains, scorecard criteria reached 80 to 100% agreement among caregivers (n = 8) and clinicians (n = 2), resulting in a total of 218 scoring criteria and levels across 10 tasks. In the gross motor domain, scorecard criteria reached 100% agreement among physical therapists (n = 8) with a total of 347 scoring criteria and levels across 8 tasks. CONCLUSIONS: The ASVA was developed with insights from the AS community, including caregivers of individuals with AS, clinicians, and researchers. The ASVA is a novel, disease-specific, clinician-reported outcome measure that uses standardized video capture and scorecards that were developed through a rigorous process, resulting in well-developed criteria to quantify meaningful changes of function in individuals with AS in communication, ADLs, gross motor function, and external direction. En ligne : https://dx.doi.org/10.1186/s11689-025-09655-z Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=576

Developmental trajectory of communication repair in children with Fragile X Syndrome / Heather FIELDING-GEBHARDT in Autism & Developmental Language Impairments, 5 (January-December 2020)  

Public ISBD [article]  inAutism & Developmental Language Impairments > 5 (January-December 2020) Titre : Developmental trajectory of communication repair in children with Fragile X Syndrome Type de document : texte imprimé Auteurs : Heather FIELDING-GEBHARDT, Auteur ; Steven F. WARREN, Auteur ; Nancy C. BRADY, Auteur Langues : Anglais (eng) Mots-clés : Pragmatics  Fragile X  language development  social communication Index. décimale : PER Périodiques En ligne : http://dx.doi.org/10.1177/2396941520909014 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=438 [article] Developmental trajectory of communication repair in children with Fragile X Syndrome [texte imprimé] / Heather FIELDING-GEBHARDT, Auteur ; Steven F. WARREN, Auteur ; Nancy C. BRADY, Auteur. Langues : Anglais (eng) in Autism & Developmental Language Impairments > 5 (January-December 2020) Mots-clés : Pragmatics  Fragile X  language development  social communication Index. décimale : PER Périodiques En ligne : http://dx.doi.org/10.1177/2396941520909014 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=438

Effectiveness of Responsivity Intervention Strategies on Prelinguistic and Language Outcomes for Children with Autism Spectrum Disorder: A Systematic Review and Meta-Analysis of Group and Single Case Studies / Jena MCDANIEL in Journal of Autism and Developmental Disorders, 52-11 (November 2022)  

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Predicting progress in word learning for children with autism and minimal verbal skills / Nancy C. BRADY in Journal of Neurodevelopmental Disorders, 13 (2021)  

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Rethinking Measurement Standards of Autism Symptomology in Adolescents with Fragile X Syndrome / Heather FIELDING-GEBHARDT in Journal of Autism and Developmental Disorders, 51-12 (December 2021)  

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Symbolic Play of Preschoolers with Severe Communication Impairments with Autism and Other Developmental Delays: More Similarities than Differences / Kathy S. THIEMANN-BOURQUE in Journal of Autism and Developmental Disorders, 42-5 (May 2012)  

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The impact of parenting stress and cultural orientation on communication skills in minimally verbal children with autism spectrum disorders: A comparative study in India and the US / Suma SUSWARAM in Research in Autism Spectrum Disorders, 112 (April 2024)  

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The Longitudinal Effects of Parenting on Adaptive Behavior in Children with Fragile X Syndrome / Steven F. WARREN in Journal of Autism and Developmental Disorders, 47-3 (March 2017)  

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Using the Clinical Global Impression scale to assess social communication change in minimally verbal children with autism spectrum disorder / Christina TOOLAN in Autism Research, 15-2 (February 2022)  

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