Caregiver Attributions of Toddlers' Behaviors: A Comparison Between Groups of Children with Differing Developmental Concerns / Daina M. TAGAVI in Journal of Autism and Developmental Disorders, 54-3 (March 2024)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 54-3 (March 2024) . - p.983-996 Titre : Caregiver Attributions of Toddlers' Behaviors: A Comparison Between Groups of Children with Differing Developmental Concerns Type de document : texte imprimé Auteurs : Daina M. TAGAVI, Auteur ; Hannah R. BENAVIDEZ, Auteur ; Taylor C. KALMUS, Auteur ; Carlyn C. PERRYMAN, Auteur ; Wendy L. STONE, Auteur Article en page(s) : p.983-996 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Little is known about the attributional patterns of caregivers of autistic children, particularly in relation to caregivers of children with other developmental or behavioral disorders. This study examined differences in caregiver attributions of child behavior between three groups: toddlers with (1) Autism spectrum disorder (ASD) or ASD concerns; (2) Other developmental concerns; and (3) No concerns. Qualitative descriptions of actual child behaviors were coded using a three-stage content analysis. Regression analyses were utilized to determine if group membership predicted types of positive and challenging behaviors caregivers endorsed, as well as their attributions of these behaviors. Caregivers of children with ASD or ASD concerns endorsed similar types of behaviors, but rated their child?s positive behaviors as less characteristic of their child and more a function of the particular situation, less stable or permanent, and less controllable as compared to caregivers of toddlers with other developmental or no concerns. Additionally, they rated their child?s challenging behaviors as more stable or permanent and less controllable as compared to caregivers of toddlers with other developmental concerns or no concerns. These findings suggest that caregivers of children with ASD and ASD related concerns may be vulnerable to a negative attributional pattern, which can have important implications for child and family functioning and overall quality of life. En ligne : https://doi.org/10.1007/s10803-022-05879-3 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=524 [article] Caregiver Attributions of Toddlers' Behaviors: A Comparison Between Groups of Children with Differing Developmental Concerns [texte imprimé] / Daina M. TAGAVI, Auteur ; Hannah R. BENAVIDEZ, Auteur ; Taylor C. KALMUS, Auteur ; Carlyn C. PERRYMAN, Auteur ; Wendy L. STONE, Auteur . - p.983-996. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 54-3 (March 2024) . - p.983-996 Index. décimale : PER Périodiques Résumé : Little is known about the attributional patterns of caregivers of autistic children, particularly in relation to caregivers of children with other developmental or behavioral disorders. This study examined differences in caregiver attributions of child behavior between three groups: toddlers with (1) Autism spectrum disorder (ASD) or ASD concerns; (2) Other developmental concerns; and (3) No concerns. Qualitative descriptions of actual child behaviors were coded using a three-stage content analysis. Regression analyses were utilized to determine if group membership predicted types of positive and challenging behaviors caregivers endorsed, as well as their attributions of these behaviors. Caregivers of children with ASD or ASD concerns endorsed similar types of behaviors, but rated their child?s positive behaviors as less characteristic of their child and more a function of the particular situation, less stable or permanent, and less controllable as compared to caregivers of toddlers with other developmental or no concerns. Additionally, they rated their child?s challenging behaviors as more stable or permanent and less controllable as compared to caregivers of toddlers with other developmental concerns or no concerns. These findings suggest that caregivers of children with ASD and ASD related concerns may be vulnerable to a negative attributional pattern, which can have important implications for child and family functioning and overall quality of life. En ligne : https://doi.org/10.1007/s10803-022-05879-3 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=524

Co-designing a novel service delivery pathway to increase access to autism identification and care within a non-profit community organization serving culturally and linguistically diverse families / Shana M. ATTAR in Autism, 29-8 (August 2025)  

Public ISBD [article]  inAutism > 29-8 (August 2025) . - p.2097-2110 Titre : Co-designing a novel service delivery pathway to increase access to autism identification and care within a non-profit community organization serving culturally and linguistically diverse families Type de document : texte imprimé Auteurs : Shana M. ATTAR, Auteur ; Hannah R. BENAVIDEZ, Auteur ; Carol GICHERU, Auteur ; Colleen ALABI, Auteur ; Risho SAPANO, Auteur ; Wendy L. STONE, Auteur Article en page(s) : p.2097-2110 Langues : Anglais (eng) Mots-clés : autism  co-design  community-based  developmental delay  diversity  early intervention  healthcare access  multilingual Index. décimale : PER Périodiques Résumé : Culturally and linguistically diverse families experience greater challenges accessing timely, autism-specialized care relative to non-culturally and linguistically diverse families, and ultimately experience less optimal health outcomes. Alternative pathways to access autism care for culturally and linguistically diverse families are needed; however, the features of a novel pathway remain unclear. A co-design process was used with a culturally embedded non-profit community organization to develop a novel service delivery pathway for increasing access to autism services for culturally and linguistically diverse families in the United States. Twenty-three individuals participated in eight, 2-hour co-design sessions. Participants included front-line staff (seven non-specialist providers), management leaders (two program supervisors and two organization directors), and eight end-users (caregivers) from seven understudied cultural and linguistic groups (i.e. Somali Mai Mai, Swahili, Arabic, Dari/Pashto, French, Amharic, and Tigrinya) and four autism specialists. The co-design identified five key design features: respecting diversity, prioritizing caregiver agency, increasing accessibility, minimizing stigma, and maximizing feasibility. These features informed the co-development of a novel pathway to access autism identification and care for culturally and linguistically diverse families that pairs navigation services with the dissemination of brief, culturally sensitive, and evidence-based parenting and coping strategies. This power-sharing, community-academic partnership may serve as a model for improving equity in autism care.Lay Abstract Early, specialized support is important for helping young autistic children learn and develop. However, families from different cultural backgrounds often find it challenging to access this early help. A university lab and a community organization worked together to create a new way for these families to access autism services. We used a co-design approach, which involves gathering feedback from a variety of people involved in autism care, including service providers, community leaders, caregivers, and autism experts. Twenty-three individuals participated in eight co-design sessions that were two?hours each. Participants were from different language groups, including Somali Mai Mai, Swahili, Arabic, Dari/Pashto, French, Amharic, and Tigrinya. These sessions helped us identify five important factors important for improving access to needed services: being mindful about cultural differences between groups, empowering caregivers, providing information and support for accessing services, reducing stigma around autism, and ensuring the service is practical to use. Based on these factors, we developed a new pathway for families to access autism care. This new approach includes providing help in navigating the medical and educational systems and provides short, culturally appropriate advice for parenting and coping. This project shows how working together with communities can create more fair and effective ways to provide autism support. En ligne : https://journals.sagepub.com/doi/abs/10.1177/13623613251335702 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=564 [article] Co-designing a novel service delivery pathway to increase access to autism identification and care within a non-profit community organization serving culturally and linguistically diverse families [texte imprimé] / Shana M. ATTAR, Auteur ; Hannah R. BENAVIDEZ, Auteur ; Carol GICHERU, Auteur ; Colleen ALABI, Auteur ; Risho SAPANO, Auteur ; Wendy L. STONE, Auteur . - p.2097-2110. Langues : Anglais (eng) in Autism > 29-8 (August 2025) . - p.2097-2110 Mots-clés : autism  co-design  community-based  developmental delay  diversity  early intervention  healthcare access  multilingual Index. décimale : PER Périodiques Résumé : Culturally and linguistically diverse families experience greater challenges accessing timely, autism-specialized care relative to non-culturally and linguistically diverse families, and ultimately experience less optimal health outcomes. Alternative pathways to access autism care for culturally and linguistically diverse families are needed; however, the features of a novel pathway remain unclear. A co-design process was used with a culturally embedded non-profit community organization to develop a novel service delivery pathway for increasing access to autism services for culturally and linguistically diverse families in the United States. Twenty-three individuals participated in eight, 2-hour co-design sessions. Participants included front-line staff (seven non-specialist providers), management leaders (two program supervisors and two organization directors), and eight end-users (caregivers) from seven understudied cultural and linguistic groups (i.e. Somali Mai Mai, Swahili, Arabic, Dari/Pashto, French, Amharic, and Tigrinya) and four autism specialists. The co-design identified five key design features: respecting diversity, prioritizing caregiver agency, increasing accessibility, minimizing stigma, and maximizing feasibility. These features informed the co-development of a novel pathway to access autism identification and care for culturally and linguistically diverse families that pairs navigation services with the dissemination of brief, culturally sensitive, and evidence-based parenting and coping strategies. This power-sharing, community-academic partnership may serve as a model for improving equity in autism care.Lay Abstract Early, specialized support is important for helping young autistic children learn and develop. However, families from different cultural backgrounds often find it challenging to access this early help. A university lab and a community organization worked together to create a new way for these families to access autism services. We used a co-design approach, which involves gathering feedback from a variety of people involved in autism care, including service providers, community leaders, caregivers, and autism experts. Twenty-three individuals participated in eight co-design sessions that were two?hours each. Participants were from different language groups, including Somali Mai Mai, Swahili, Arabic, Dari/Pashto, French, Amharic, and Tigrinya. These sessions helped us identify five important factors important for improving access to needed services: being mindful about cultural differences between groups, empowering caregivers, providing information and support for accessing services, reducing stigma around autism, and ensuring the service is practical to use. Based on these factors, we developed a new pathway for families to access autism care. This new approach includes providing help in navigating the medical and educational systems and provides short, culturally appropriate advice for parenting and coping. This project shows how working together with communities can create more fair and effective ways to provide autism support. En ligne : https://journals.sagepub.com/doi/abs/10.1177/13623613251335702 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=564

Facilitating Autism Service Navigation, Parenting, and Self-Care Within a Community-Based Organization: A Pilot Feasibility Study With Culturally and Linguistically Diverse Families / Shana M. ATTAR in Autism, 30-10 (October 2026)  

Public ISBD [article]  inAutism > 30-10 (October 2026) . - p.2516-2531 Titre : Facilitating Autism Service Navigation, Parenting, and Self-Care Within a Community-Based Organization: A Pilot Feasibility Study With Culturally and Linguistically Diverse Families Type de document : texte imprimé Auteurs : Shana M. ATTAR, Auteur ; Hannah BENAVIDEZ, Auteur ; Carol GICHERU, Auteur ; Colleen ALABI, Auteur ; Risho SAPANO, Auteur ; Wendy L. STONE, Auteur Article en page(s) : p.2516-2531 Langues : Anglais (eng) Mots-clés : autism  developmental delay  co-design  community-based organizations  early intervention  service navigation  culturally and linguistically diverse  multilingual Index. décimale : PER Périodiques Résumé : Health care and early education systems are common entry points for autism identification and specialized services. However, culturally and linguistically diverse families are less likely to experience timely or positive interactions within these systems. This pilot feasibility study examined implementation outcomes of using non-specialist providers (NSPs) within a community-based non-profit organization to support early service navigation while also promoting caregiver use of evidence-based parenting and self-care strategies. Six multilingual NSPs completed a web-based training and delivered a four-session program, the Family Care Project, to 35 families of children aged 16 months to 5 years for whom there were developmental concerns. Implementation outcomes were assessed using Proctor’s taxonomy, including acceptability, feasibility, appropriateness, adoption, penetration, and sustainability. All families completed all four sessions within 5 weeks. NSPs reported high acceptability, feasibility, and appropriateness of the training and caregiver-facing materials; adoption was high, with 95% of planned module content delivered. At the 5-month follow-up, NSPs reported continued program use with additional families, providing evidence of organizational penetration and sustainability. Results suggest that a low-resource, culturally responsive curriculum can be acceptable, feasible, and appropriate for NSP-led delivery in community-based settings and may offer a scalable complement to health care–based navigation models.Lay Abstract Medical professionals and educators are often the first to identify concerns about a child’s development and help families seek care. However, families who speak languages other than English or who come from diverse cultural backgrounds may face barriers to accessing this support. This study examined whether trusted community providers, who share language and cultural backgrounds with families but do not have specialized clinical training, can deliver autism-related support within a community-based non-profit organization. Six community-based providers who speak a range of African and Middle Eastern languages completed an online training through the Family Care Project and used this program to support 35 families of young children. Providers reported that the program was easy to use and fit well with the work they already do. All families completed the program within 5 weeks. Six months later, providers had continued delivering the program and had supported an additional 24 families. These findings suggest that a low-cost, community-based program led by trusted providers from the same communities as participating families can support early autism-related service navigation. The Family Care Project may help more families access information, resources, and support early in their child’s development. En ligne : https://dx.doi.org/10.1177/13623613261469915 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593 [article] Facilitating Autism Service Navigation, Parenting, and Self-Care Within a Community-Based Organization: A Pilot Feasibility Study With Culturally and Linguistically Diverse Families [texte imprimé] / Shana M. ATTAR, Auteur ; Hannah BENAVIDEZ, Auteur ; Carol GICHERU, Auteur ; Colleen ALABI, Auteur ; Risho SAPANO, Auteur ; Wendy L. STONE, Auteur . - p.2516-2531. Langues : Anglais (eng) in Autism > 30-10 (October 2026) . - p.2516-2531 Mots-clés : autism  developmental delay  co-design  community-based organizations  early intervention  service navigation  culturally and linguistically diverse  multilingual Index. décimale : PER Périodiques Résumé : Health care and early education systems are common entry points for autism identification and specialized services. However, culturally and linguistically diverse families are less likely to experience timely or positive interactions within these systems. This pilot feasibility study examined implementation outcomes of using non-specialist providers (NSPs) within a community-based non-profit organization to support early service navigation while also promoting caregiver use of evidence-based parenting and self-care strategies. Six multilingual NSPs completed a web-based training and delivered a four-session program, the Family Care Project, to 35 families of children aged 16 months to 5 years for whom there were developmental concerns. Implementation outcomes were assessed using Proctor’s taxonomy, including acceptability, feasibility, appropriateness, adoption, penetration, and sustainability. All families completed all four sessions within 5 weeks. NSPs reported high acceptability, feasibility, and appropriateness of the training and caregiver-facing materials; adoption was high, with 95% of planned module content delivered. At the 5-month follow-up, NSPs reported continued program use with additional families, providing evidence of organizational penetration and sustainability. Results suggest that a low-resource, culturally responsive curriculum can be acceptable, feasible, and appropriate for NSP-led delivery in community-based settings and may offer a scalable complement to health care–based navigation models.Lay Abstract Medical professionals and educators are often the first to identify concerns about a child’s development and help families seek care. However, families who speak languages other than English or who come from diverse cultural backgrounds may face barriers to accessing this support. This study examined whether trusted community providers, who share language and cultural backgrounds with families but do not have specialized clinical training, can deliver autism-related support within a community-based non-profit organization. Six community-based providers who speak a range of African and Middle Eastern languages completed an online training through the Family Care Project and used this program to support 35 families of young children. Providers reported that the program was easy to use and fit well with the work they already do. All families completed the program within 5 weeks. Six months later, providers had continued delivering the program and had supported an additional 24 families. These findings suggest that a low-cost, community-based program led by trusted providers from the same communities as participating families can support early autism-related service navigation. The Family Care Project may help more families access information, resources, and support early in their child’s development. En ligne : https://dx.doi.org/10.1177/13623613261469915 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593

Shared and divergent mental health characteristics of ADNP-, CHD8- and DYRK1A-related neurodevelopmental conditions / Emily NEUHAUS in Journal of Neurodevelopmental Disorders, 16 (2024)  

Public ISBD [article]  inJournal of Neurodevelopmental Disorders > 16 (2024) Titre : Shared and divergent mental health characteristics of ADNP-, CHD8- and DYRK1A-related neurodevelopmental conditions Type de document : texte imprimé Auteurs : Emily NEUHAUS, Auteur ; Hannah REA, Auteur ; Elizabeth JONES, Auteur ; Hannah BENAVIDEZ, Auteur ; Conor MILES, Auteur ; Alana WHITING, Auteur ; Margaret JOHANSSON, Auteur ; Curtis EAYRS, Auteur ; Evangeline C. KURTZ-NELSON, Auteur ; Rachel EARL, Auteur ; Raphael A. BERNIER, Auteur ; Evan E. EICHLER, Auteur Langues : Anglais (eng) Mots-clés : Adolescent  Child  Female  Humans  Male  Autism Spectrum Disorder/complications  DNA-Binding Proteins/genetics  Homeodomain Proteins/genetics  Intellectual Disability/genetics/complications  Mental Health  Nerve Tissue Proteins/genetics  Neurodevelopmental Disorders/genetics/complications  Quality of Life  Transcription Factors/genetics  Adnp  Chd8  Dyrk1a  Asd  Autism  Neurodevelopmental conditions  Phenotyping  genetics  opinions or views of the National Institutes of Health (NIH). E.E.E. is a  scientific advisory board (SAB) member of Variant Bio, Inc. The remaining authors  declare no competing interests. Index. décimale : PER Périodiques Résumé : BACKGROUND: Neurodevelopmental conditions such as intellectual disability (ID) and autism spectrum disorder (ASD) can stem from a broad array of inherited and de novo genetic differences, with marked physiological and behavioral impacts. We currently know little about the psychiatric phenotypes of rare genetic variants associated with ASD, despite heightened risk of psychiatric concerns in ASD more broadly. Understanding behavioral features of these variants can identify shared versus specific phenotypes across gene groups, facilitate mechanistic models, and provide prognostic insights to inform clinical practice. In this paper, we evaluate behavioral features within three gene groups associated with ID and ASD - ADNP, CHD8, and DYRK1A - with two aims: (1) characterize phenotypes across behavioral domains of anxiety, depression, ADHD, and challenging behavior; and (2) understand whether age and early developmental milestones are associated with later mental health outcomes. METHODS: Phenotypic data were obtained for youth with disruptive variants in ADNP, CHD8, or DYRK1A (N = 65, mean age = 8.7 years, 40% female) within a long-running, genetics-first study. Standardized caregiver-report measures of mental health features (anxiety, depression, attention-deficit/hyperactivity, oppositional behavior) and developmental history were extracted and analyzed for effects of gene group, age, and early developmental milestones on mental health features. RESULTS: Patterns of mental health features varied by group, with anxiety most prominent for CHD8, oppositional features overrepresented among ADNP, and attentional and depressive features most prominent for DYRK1A. For the full sample, age was positively associated with anxiety features, such that elevations in anxiety relative to same-age and same-sex peers may worsen with increasing age. Predictive utility of early developmental milestones was limited, with evidence of early language delays predicting greater difficulties across behavioral domains only for the CHD8 group. CONCLUSIONS: Despite shared associations with autism and intellectual disability, disruptive variants in ADNP, CHD8, and DYRK1A may yield variable psychiatric phenotypes among children and adolescents. With replication in larger samples over time, efforts such as these may contribute to improved clinical care for affected children and adolescents, allow for earlier identification of emerging mental health difficulties, and promote early intervention to alleviate concerns and improve quality of life. En ligne : https://dx.doi.org/10.1186/s11689-024-09532-1 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=575 [article] Shared and divergent mental health characteristics of ADNP-, CHD8- and DYRK1A-related neurodevelopmental conditions [texte imprimé] / Emily NEUHAUS, Auteur ; Hannah REA, Auteur ; Elizabeth JONES, Auteur ; Hannah BENAVIDEZ, Auteur ; Conor MILES, Auteur ; Alana WHITING, Auteur ; Margaret JOHANSSON, Auteur ; Curtis EAYRS, Auteur ; Evangeline C. KURTZ-NELSON, Auteur ; Rachel EARL, Auteur ; Raphael A. BERNIER, Auteur ; Evan E. EICHLER, Auteur. Langues : Anglais (eng) in Journal of Neurodevelopmental Disorders > 16 (2024) Mots-clés : Adolescent  Child  Female  Humans  Male  Autism Spectrum Disorder/complications  DNA-Binding Proteins/genetics  Homeodomain Proteins/genetics  Intellectual Disability/genetics/complications  Mental Health  Nerve Tissue Proteins/genetics  Neurodevelopmental Disorders/genetics/complications  Quality of Life  Transcription Factors/genetics  Adnp  Chd8  Dyrk1a  Asd  Autism  Neurodevelopmental conditions  Phenotyping  genetics  opinions or views of the National Institutes of Health (NIH). E.E.E. is a  scientific advisory board (SAB) member of Variant Bio, Inc. The remaining authors  declare no competing interests. Index. décimale : PER Périodiques Résumé : BACKGROUND: Neurodevelopmental conditions such as intellectual disability (ID) and autism spectrum disorder (ASD) can stem from a broad array of inherited and de novo genetic differences, with marked physiological and behavioral impacts. We currently know little about the psychiatric phenotypes of rare genetic variants associated with ASD, despite heightened risk of psychiatric concerns in ASD more broadly. Understanding behavioral features of these variants can identify shared versus specific phenotypes across gene groups, facilitate mechanistic models, and provide prognostic insights to inform clinical practice. In this paper, we evaluate behavioral features within three gene groups associated with ID and ASD - ADNP, CHD8, and DYRK1A - with two aims: (1) characterize phenotypes across behavioral domains of anxiety, depression, ADHD, and challenging behavior; and (2) understand whether age and early developmental milestones are associated with later mental health outcomes. METHODS: Phenotypic data were obtained for youth with disruptive variants in ADNP, CHD8, or DYRK1A (N = 65, mean age = 8.7 years, 40% female) within a long-running, genetics-first study. Standardized caregiver-report measures of mental health features (anxiety, depression, attention-deficit/hyperactivity, oppositional behavior) and developmental history were extracted and analyzed for effects of gene group, age, and early developmental milestones on mental health features. RESULTS: Patterns of mental health features varied by group, with anxiety most prominent for CHD8, oppositional features overrepresented among ADNP, and attentional and depressive features most prominent for DYRK1A. For the full sample, age was positively associated with anxiety features, such that elevations in anxiety relative to same-age and same-sex peers may worsen with increasing age. Predictive utility of early developmental milestones was limited, with evidence of early language delays predicting greater difficulties across behavioral domains only for the CHD8 group. CONCLUSIONS: Despite shared associations with autism and intellectual disability, disruptive variants in ADNP, CHD8, and DYRK1A may yield variable psychiatric phenotypes among children and adolescents. With replication in larger samples over time, efforts such as these may contribute to improved clinical care for affected children and adolescents, allow for earlier identification of emerging mental health difficulties, and promote early intervention to alleviate concerns and improve quality of life. En ligne : https://dx.doi.org/10.1186/s11689-024-09532-1 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=575

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