Developing a Measure of Key Adult Outcomes in Adults with Developmental Disabilities: Conceptual Model and Item Generation of the REALS (Relationships, Employment, Autonomy, and Life Satisfaction) / Kristen T. MACKENZIE ; Kelly B. BECK ; Shaun M. EACK ; Katharine N. Zeglen ; Caitlin M. CONNER ; Carla A. MAZEFSKY in Journal of Autism and Developmental Disorders, 55-2 (February 2025)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 55-2 (February 2025) . - p.428-439 Titre : Developing a Measure of Key Adult Outcomes in Adults with Developmental Disabilities: Conceptual Model and Item Generation of the REALS (Relationships, Employment, Autonomy, and Life Satisfaction) : Journal of Autism and Developmental Disorders Type de document : Texte imprimé et/ou numérique Auteurs : Kristen T. MACKENZIE, Auteur ; Kelly B. BECK, Auteur ; Shaun M. EACK, Auteur ; Katharine N. Zeglen, Auteur ; Caitlin M. CONNER, Auteur ; Carla A. MAZEFSKY, Auteur Article en page(s) : p.428-439 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Employment, social relationships, and autonomy are priorities to people with intellectual and developmental disabilities (IDDs). However, few validated measures exist to systematically assess these key adult outcomes in this population. This research includes first steps to develop self- and proxy report measures of life outcomes for adults with IDDs-the Relationships, Employment, Autonomy, and Life Satisfaction (REALS). A literature search identified existing adult outcome measures, and comparison of their domains informed initial conceptual model development. External consultants revised the model, and items were generated. Autistic adults (n = 15), adults with other IDDs (n = 7), caregivers of autistic adults (n = 13), and caregivers of adults with other IDDs (n = 10) completed in-depth cognitive interviews to assess comprehension of items and response categories, factors influencing how participants respond to items, and the inclusiveness of the item pool. A final conceptual model was generated with three subdomains (social relationships, employment, and autonomy), including assessment of life satisfaction within each domain. Cognitive interviews revealed that response set restructuring and item-level revisions were needed to capture the complexity of adult life and make the measure more accessible across a range of abilities. This study developed a conceptual model of relationships, work, and autonomy specific to adults with IDDs. Future work will involve collecting data from 800?+?self-reporters with IDDs and 800?+?caregivers of adults with IDDs to conduct psychometric analyses. Improving measurement in this area is critical to better understanding the needs of adults with IDDs and improving services available to them. En ligne : https://doi.org/10.1007/s10803-023-06219-9 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=548 [article] Developing a Measure of Key Adult Outcomes in Adults with Developmental Disabilities: Conceptual Model and Item Generation of the REALS (Relationships, Employment, Autonomy, and Life Satisfaction) : Journal of Autism and Developmental Disorders [Texte imprimé et/ou numérique] / Kristen T. MACKENZIE, Auteur ; Kelly B. BECK, Auteur ; Shaun M. EACK, Auteur ; Katharine N. Zeglen, Auteur ; Caitlin M. CONNER, Auteur ; Carla A. MAZEFSKY, Auteur . - p.428-439. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 55-2 (February 2025) . - p.428-439 Index. décimale : PER Périodiques Résumé : Employment, social relationships, and autonomy are priorities to people with intellectual and developmental disabilities (IDDs). However, few validated measures exist to systematically assess these key adult outcomes in this population. This research includes first steps to develop self- and proxy report measures of life outcomes for adults with IDDs-the Relationships, Employment, Autonomy, and Life Satisfaction (REALS). A literature search identified existing adult outcome measures, and comparison of their domains informed initial conceptual model development. External consultants revised the model, and items were generated. Autistic adults (n = 15), adults with other IDDs (n = 7), caregivers of autistic adults (n = 13), and caregivers of adults with other IDDs (n = 10) completed in-depth cognitive interviews to assess comprehension of items and response categories, factors influencing how participants respond to items, and the inclusiveness of the item pool. A final conceptual model was generated with three subdomains (social relationships, employment, and autonomy), including assessment of life satisfaction within each domain. Cognitive interviews revealed that response set restructuring and item-level revisions were needed to capture the complexity of adult life and make the measure more accessible across a range of abilities. This study developed a conceptual model of relationships, work, and autonomy specific to adults with IDDs. Future work will involve collecting data from 800?+?self-reporters with IDDs and 800?+?caregivers of adults with IDDs to conduct psychometric analyses. Improving measurement in this area is critical to better understanding the needs of adults with IDDs and improving services available to them. En ligne : https://doi.org/10.1007/s10803-023-06219-9 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=548

Emotion dysregulation in autism: Severity and correlates in early childhood / Jessie B. NORTHRUP in Autism Research, 17-12 (December 2024)  

Public ISBD [article]  inAutism Research > 17-12 (December 2024) . - p.2662-2675 Titre : Emotion dysregulation in autism: Severity and correlates in early childhood Type de document : Texte imprimé et/ou numérique Auteurs : Jessie B. NORTHRUP, Auteur ; Amy G. HARTMAN, Auteur ; Kristen T. MACKENZIE, Auteur ; Shalini SIVATHASAN, Auteur ; Safaa ELDEEB, Auteur ; Carla A. MAZEFSKY, Auteur Article en page(s) : p.2662-2675 Langues : Anglais (eng) Mots-clés : autism  dysphoria  emotion dysregulation  irritability  preschool Index. décimale : PER Périodiques Résumé : Abstract Emotion dysregulation (ED) is common and severe in older autistic youth, but is rarely the focus of early autism screening or intervention. Moreover, research characterizing ED in the preschool years (when autism is typically diagnosed) is limited. This study aimed to characterize ED in autistic children by examining (1) prevalence and severity of ED as compared to children without an autism diagnosis; and (2) correlates of ED in autistic children. A sample of 1864 parents (Mean child age?=?4.21?years, SD?=?1.16?years; 37% female) of 2?5?year-old children with (1) autism; (2) developmental concerns, but no autism; and (3) no developmental concerns or autism completed measures via an online questionnaire. ED was measured using the Emotion Dysregulation Inventory-Young Child, a parent report measure characterizing ED across two dimensions: Reactivity (fast, intense emotional reactions) and dysphoria (low positive affect, sadness, unease). Autistic preschoolers, compared to peers without developmental concerns, had more severe ED (+1.12 SD for reactivity; +0.60 SD for dysphoria) and were nearly four and three times more likely to have clinically significant reactivity and dysphoria, respectively. Autistic traits, sleep problems, speaking ability, and parent depression were the strongest correlates of ED in the autism sample. While more work is needed to establish the prevalence, severity, and correlates of ED in young autistic children, this study represents an important first step. Results highlight a critical need for more high-quality research in this area as well as the potential value of screening and intervention for ED in young autistic children. En ligne : https://dx.doi.org/10.1002/aur.3264 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=544 [article] Emotion dysregulation in autism: Severity and correlates in early childhood [Texte imprimé et/ou numérique] / Jessie B. NORTHRUP, Auteur ; Amy G. HARTMAN, Auteur ; Kristen T. MACKENZIE, Auteur ; Shalini SIVATHASAN, Auteur ; Safaa ELDEEB, Auteur ; Carla A. MAZEFSKY, Auteur . - p.2662-2675. Langues : Anglais (eng) in Autism Research > 17-12 (December 2024) . - p.2662-2675 Mots-clés : autism  dysphoria  emotion dysregulation  irritability  preschool Index. décimale : PER Périodiques Résumé : Abstract Emotion dysregulation (ED) is common and severe in older autistic youth, but is rarely the focus of early autism screening or intervention. Moreover, research characterizing ED in the preschool years (when autism is typically diagnosed) is limited. This study aimed to characterize ED in autistic children by examining (1) prevalence and severity of ED as compared to children without an autism diagnosis; and (2) correlates of ED in autistic children. A sample of 1864 parents (Mean child age?=?4.21?years, SD?=?1.16?years; 37% female) of 2?5?year-old children with (1) autism; (2) developmental concerns, but no autism; and (3) no developmental concerns or autism completed measures via an online questionnaire. ED was measured using the Emotion Dysregulation Inventory-Young Child, a parent report measure characterizing ED across two dimensions: Reactivity (fast, intense emotional reactions) and dysphoria (low positive affect, sadness, unease). Autistic preschoolers, compared to peers without developmental concerns, had more severe ED (+1.12 SD for reactivity; +0.60 SD for dysphoria) and were nearly four and three times more likely to have clinically significant reactivity and dysphoria, respectively. Autistic traits, sleep problems, speaking ability, and parent depression were the strongest correlates of ED in the autism sample. While more work is needed to establish the prevalence, severity, and correlates of ED in young autistic children, this study represents an important first step. Results highlight a critical need for more high-quality research in this area as well as the potential value of screening and intervention for ED in young autistic children. En ligne : https://dx.doi.org/10.1002/aur.3264 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=544

Interventions to Improve Outcomes for Parents of Children with Autism Spectrum Disorder: A Meta-Analysis / Kristen T. MACKENZIE in Journal of Autism and Developmental Disorders, 52-7 (July 2022)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 52-7 (July 2022) . - p.2859-2883 Titre : Interventions to Improve Outcomes for Parents of Children with Autism Spectrum Disorder: A Meta-Analysis Type de document : Texte imprimé et/ou numérique Auteurs : Kristen T. MACKENZIE, Auteur ; Shaun M. EACK, Auteur Article en page(s) : p.2859-2883 Langues : Anglais (eng) Mots-clés : Autism Spectrum Disorder/therapy  Child  Humans  Mental Health  Parenting/psychology  Parents/psychology  Meta-analysis  Parent interventions  Parent outcomes  Parent training Index. décimale : PER Périodiques Résumé : This meta-analysis examines the impact of parent interventions on outcomes for parents of children with ASD. A systematic review of the literature produced 37 studies that met inclusion criteria. Random-effects models revealed small but significant impacts of intervention on parental outcomes, primarily in parenting confidence and mental health. No improvements were observed in caregiving burden, family adjustment, physical health, or stress. Significant heterogeneity was observed; however, no moderation effects were detected for intervention or sample characteristics. These findings suggest parent interventions improve parenting confidence and, to a lesser degree, mental health. More work is needed to develop interventions that address a wider range of outcomes for parents of children with ASD. Limitations and implications for future research are discussed. En ligne : http://dx.doi.org/10.1007/s10803-021-05164-9 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=477 [article] Interventions to Improve Outcomes for Parents of Children with Autism Spectrum Disorder: A Meta-Analysis [Texte imprimé et/ou numérique] / Kristen T. MACKENZIE, Auteur ; Shaun M. EACK, Auteur . - p.2859-2883. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 52-7 (July 2022) . - p.2859-2883 Mots-clés : Autism Spectrum Disorder/therapy  Child  Humans  Mental Health  Parenting/psychology  Parents/psychology  Meta-analysis  Parent interventions  Parent outcomes  Parent training Index. décimale : PER Périodiques Résumé : This meta-analysis examines the impact of parent interventions on outcomes for parents of children with ASD. A systematic review of the literature produced 37 studies that met inclusion criteria. Random-effects models revealed small but significant impacts of intervention on parental outcomes, primarily in parenting confidence and mental health. No improvements were observed in caregiving burden, family adjustment, physical health, or stress. Significant heterogeneity was observed; however, no moderation effects were detected for intervention or sample characteristics. These findings suggest parent interventions improve parenting confidence and, to a lesser degree, mental health. More work is needed to develop interventions that address a wider range of outcomes for parents of children with ASD. Limitations and implications for future research are discussed. En ligne : http://dx.doi.org/10.1007/s10803-021-05164-9 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=477

Obtaining a First Diagnosis of Autism Spectrum Disorder: Descriptions of the Diagnostic Process and Correlates of Parent Satisfaction from a National Sample / Kristen T. MACKENZIE in Journal of Autism and Developmental Disorders, 53-10 (October 2023)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 53-10 (October 2023) . - p.3799-3812 Titre : Obtaining a First Diagnosis of Autism Spectrum Disorder: Descriptions of the Diagnostic Process and Correlates of Parent Satisfaction from a National Sample Type de document : Texte imprimé et/ou numérique Auteurs : Kristen T. MACKENZIE, Auteur ; Carla A. MAZEFSKY, Auteur ; Shaun M. EACK, Auteur Article en page(s) : p.3799-3812 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Obtaining an autism spectrum disorder (ASD) diagnosis is often challenging for parents. The purpose of this study was to better understand this process and examine how elements of the process may influence parent satisfaction. A total of 406 parents of autistic children participated. Participants were administered a survey covering the ASD diagnostic process. Parents had developmental concerns early but experienced long wait times and usually attended many appointments. Mean diagnostic age was 3.26 years and overall delay was 1.20 years. Stress and being told there was "no problem" were significantly associated with parental satisfaction with the process. Findings provide insight into challenges experienced by families of autistic children and can help pinpoint areas where the diagnostic process may be improved. En ligne : https://doi.org/10.1007/s10803-022-05673-1 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=511 [article] Obtaining a First Diagnosis of Autism Spectrum Disorder: Descriptions of the Diagnostic Process and Correlates of Parent Satisfaction from a National Sample [Texte imprimé et/ou numérique] / Kristen T. MACKENZIE, Auteur ; Carla A. MAZEFSKY, Auteur ; Shaun M. EACK, Auteur . - p.3799-3812. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 53-10 (October 2023) . - p.3799-3812 Index. décimale : PER Périodiques Résumé : Obtaining an autism spectrum disorder (ASD) diagnosis is often challenging for parents. The purpose of this study was to better understand this process and examine how elements of the process may influence parent satisfaction. A total of 406 parents of autistic children participated. Participants were administered a survey covering the ASD diagnostic process. Parents had developmental concerns early but experienced long wait times and usually attended many appointments. Mean diagnostic age was 3.26 years and overall delay was 1.20 years. Stress and being told there was "no problem" were significantly associated with parental satisfaction with the process. Findings provide insight into challenges experienced by families of autistic children and can help pinpoint areas where the diagnostic process may be improved. En ligne : https://doi.org/10.1007/s10803-022-05673-1 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=511

Stakeholder informed development of the Emotion Awareness and Skills Enhancement team-based program (EASE-Teams) / Kelly B. BECK in Autism, 26-3 (April 2022)  

Public ISBD [article]  inAutism > 26-3 (April 2022) . - p.586-600 Titre : Stakeholder informed development of the Emotion Awareness and Skills Enhancement team-based program (EASE-Teams) Type de document : Texte imprimé et/ou numérique Auteurs : Kelly B. BECK, Auteur ; Jessie B. NORTHRUP, Auteur ; Kaitlyn E. BREITENFELDT, Auteur ; Shannon PORTON, Auteur ; Taylor N. DAY, Auteur ; Kristen T. MACKENZIE, Auteur ; Caitlin M. CONNER, Auteur ; Carla A. MAZEFSKY, Auteur Article en page(s) : p.586-600 Langues : Anglais (eng) Mots-clés : Adolescent  Adult  Aged  Autism Spectrum Disorder/psychology/therapy  Autistic Disorder/psychology/therapy  Caregivers  Child  Emotions  Humans  Intellectual Disability/therapy  Young Adult  autism spectrum disorders  emotion regulation  family functioning and support  interventions?psychosocial/behavioral  mindfulness Index. décimale : PER Périodiques Résumé : Emotion dysregulation (ED) impacts mental health symptoms and well-being in autistic individuals. In prior work, we developed the Emotion Awareness and Skills Enhancement (EASE) to improve emotion dysregulation with autistic adolescents (aged 12-17). The study team partnered with autistic individuals, their caregivers, and expert clinicians to adapt EASE for autistic adolescents and adults with co-occurring intellectual disability and autistic elementary-aged children, groups that often benefit from caregiver support in treatment. In three phases, we (1) gathered caregiver and expert feedback to adapt the original EASE program for autistic adults with intellectual disability, (2) revised the treatment after using it with six autistic adults with intellectual disability, and (3) tested the newly developed caregiver-client team-based treatment, called EASE-Teams, in a small group of 10 autistic individuals with and without intellectual disability (aged 7-25). Families found EASE-Teams to be acceptable and helpful. We found improvements in emotion dysregulation and mental health symptoms for autistic participants. Caregivers reported less stress from their child's dysregulation after participating. These results show that EASE-Teams can be appropriate for different developmental and cognitive needs. Future studies will need to test the benefits of the treatment in community clinics. En ligne : https://dx.doi.org/10.1177/13623613211061936 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=473 [article] Stakeholder informed development of the Emotion Awareness and Skills Enhancement team-based program (EASE-Teams) [Texte imprimé et/ou numérique] / Kelly B. BECK, Auteur ; Jessie B. NORTHRUP, Auteur ; Kaitlyn E. BREITENFELDT, Auteur ; Shannon PORTON, Auteur ; Taylor N. DAY, Auteur ; Kristen T. MACKENZIE, Auteur ; Caitlin M. CONNER, Auteur ; Carla A. MAZEFSKY, Auteur . - p.586-600. Langues : Anglais (eng) in Autism > 26-3 (April 2022) . - p.586-600 Mots-clés : Adolescent  Adult  Aged  Autism Spectrum Disorder/psychology/therapy  Autistic Disorder/psychology/therapy  Caregivers  Child  Emotions  Humans  Intellectual Disability/therapy  Young Adult  autism spectrum disorders  emotion regulation  family functioning and support  interventions?psychosocial/behavioral  mindfulness Index. décimale : PER Périodiques Résumé : Emotion dysregulation (ED) impacts mental health symptoms and well-being in autistic individuals. In prior work, we developed the Emotion Awareness and Skills Enhancement (EASE) to improve emotion dysregulation with autistic adolescents (aged 12-17). The study team partnered with autistic individuals, their caregivers, and expert clinicians to adapt EASE for autistic adolescents and adults with co-occurring intellectual disability and autistic elementary-aged children, groups that often benefit from caregiver support in treatment. In three phases, we (1) gathered caregiver and expert feedback to adapt the original EASE program for autistic adults with intellectual disability, (2) revised the treatment after using it with six autistic adults with intellectual disability, and (3) tested the newly developed caregiver-client team-based treatment, called EASE-Teams, in a small group of 10 autistic individuals with and without intellectual disability (aged 7-25). Families found EASE-Teams to be acceptable and helpful. We found improvements in emotion dysregulation and mental health symptoms for autistic participants. Caregivers reported less stress from their child's dysregulation after participating. These results show that EASE-Teams can be appropriate for different developmental and cognitive needs. Future studies will need to test the benefits of the treatment in community clinics. En ligne : https://dx.doi.org/10.1177/13623613211061936 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=473

The Relationships, Employment, Autonomy, and Life Satisfaction (REALS) Measures for Autistic Adults and Adults With Other Intellectual and Developmental Disabilities: Psychometric Testing of the Self-Report and Proxy Versions / Caitlin M. CONNER in Autism Research, 18-3 (March 2025)  

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