"I do my best to do right by her": Autistic motherhood and the experience of raising a non-autistic adolescent daughter / Natalie LIBSTER in Autism, 28-6 (June 2024)  

Public ISBD [article]  inAutism > 28-6 (June 2024) . - p.1357-1368 Titre : "I do my best to do right by her": Autistic motherhood and the experience of raising a non-autistic adolescent daughter Type de document : Texte imprimé et/ou numérique Auteurs : Natalie LIBSTER, Auteur ; Robin HARWOOD, Auteur ; Karen MEACHAM, Auteur ; Connie KASARI, Auteur Article en page(s) : p.1357-1368 Langues : Anglais (eng) Mots-clés : adolescent daughter  autistic mother  interpretative phenomenological analysis  parent-child relationship Index. décimale : PER Périodiques Résumé : Little is known about the parenting experiences of autistic mothers, yet there is reason to believe that autistic mothers of non-autistic daughters have a unique set of experiences, especially during their daughters' adolescence. Seven autistic mothers of adolescent (n = 5) and adult (n = 2) non-autistic daughters were interviewed about their experiences of raising their daughters during adolescence. Data were analyzed using an Interpretative Phenomenological Analysis (IPA) approach and four superordinate themes were identified: (1) Closeness in relationships (expressed affection, safety and support, understanding mothers' autism), (2) Parenting strengths (problem-solving skills, positive strategies for managing conflict), (3) Identifying own social challenges (understanding social dynamics, friendships and social groups), and (4) Building daughters' social skills (concern about daughters' social development, creating opportunities for positive social interactions). This research highlights the strengths of autistic mothers and the loving relationships they have with their daughters. Mothers in this study also revealed specific challenges, such as interacting with other parents who often ignored or excluded them. This study, therefore, emphasizes the need for greater societal awareness, understanding, acceptance, and inclusion of the autistic community. Lay Abstract Little is known about the parenting experiences of autistic mothers, especially those who have daughters who are not on the autism spectrum. In this study, we interviewed seven autistic mothers who have raised or are currently raising non-autistic teenage daughters. Mothers were asked to describe what parenting was/is like during their daughters' teenage years. We analyzed the transcripts of the interviews and found several common themes. Mothers described their relationships with their daughters to be loving, safe, and empathetic. Mothers described several strengths when it came to parenting, such as helping their daughters solve problems and using positive strategies to handle conflict with their daughters. Mothers also described challenges they faced when interacting with other non-autistic people and when trying to form relationships with them. Mothers tried to build their daughters' social skills so that they would not experience the same challenges. This study shows that autistic mothers have close, loving relationships with their non-autistic teenage daughters but have trouble forming relationships with other non-autistic people. It is, therefore, important that non-autistic parents are more understanding and welcoming of autistic mothers. En ligne : https://dx.doi.org/10.1177/13623613241241577 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529 [article] "I do my best to do right by her": Autistic motherhood and the experience of raising a non-autistic adolescent daughter [Texte imprimé et/ou numérique] / Natalie LIBSTER, Auteur ; Robin HARWOOD, Auteur ; Karen MEACHAM, Auteur ; Connie KASARI, Auteur . - p.1357-1368. Langues : Anglais (eng) in Autism > 28-6 (June 2024) . - p.1357-1368 Mots-clés : adolescent daughter  autistic mother  interpretative phenomenological analysis  parent-child relationship Index. décimale : PER Périodiques Résumé : Little is known about the parenting experiences of autistic mothers, yet there is reason to believe that autistic mothers of non-autistic daughters have a unique set of experiences, especially during their daughters' adolescence. Seven autistic mothers of adolescent (n = 5) and adult (n = 2) non-autistic daughters were interviewed about their experiences of raising their daughters during adolescence. Data were analyzed using an Interpretative Phenomenological Analysis (IPA) approach and four superordinate themes were identified: (1) Closeness in relationships (expressed affection, safety and support, understanding mothers' autism), (2) Parenting strengths (problem-solving skills, positive strategies for managing conflict), (3) Identifying own social challenges (understanding social dynamics, friendships and social groups), and (4) Building daughters' social skills (concern about daughters' social development, creating opportunities for positive social interactions). This research highlights the strengths of autistic mothers and the loving relationships they have with their daughters. Mothers in this study also revealed specific challenges, such as interacting with other parents who often ignored or excluded them. This study, therefore, emphasizes the need for greater societal awareness, understanding, acceptance, and inclusion of the autistic community. Lay Abstract Little is known about the parenting experiences of autistic mothers, especially those who have daughters who are not on the autism spectrum. In this study, we interviewed seven autistic mothers who have raised or are currently raising non-autistic teenage daughters. Mothers were asked to describe what parenting was/is like during their daughters' teenage years. We analyzed the transcripts of the interviews and found several common themes. Mothers described their relationships with their daughters to be loving, safe, and empathetic. Mothers described several strengths when it came to parenting, such as helping their daughters solve problems and using positive strategies to handle conflict with their daughters. Mothers also described challenges they faced when interacting with other non-autistic people and when trying to form relationships with them. Mothers tried to build their daughters' social skills so that they would not experience the same challenges. This study shows that autistic mothers have close, loving relationships with their non-autistic teenage daughters but have trouble forming relationships with other non-autistic people. It is, therefore, important that non-autistic parents are more understanding and welcoming of autistic mothers. En ligne : https://dx.doi.org/10.1177/13623613241241577 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529

Identification of a distinct developmental and behavioral profile in children with Dup15q syndrome / C. DISTEFANO in Journal of Neurodevelopmental Disorders, 8-1 (December 2016)  

Public ISBD [article]  inJournal of Neurodevelopmental Disorders > 8-1 (December 2016) . - p.19 Titre : Identification of a distinct developmental and behavioral profile in children with Dup15q syndrome Type de document : Texte imprimé et/ou numérique Auteurs : C. DISTEFANO, Auteur ; A. GULSRUD, Auteur ; S. HUBERTY, Auteur ; Connie KASARI, Auteur ; E. COOK, Auteur ; L. T. REITER, Auteur ; R. THIBERT, Auteur ; S. S. JESTE, Auteur Article en page(s) : p.19 Langues : Anglais (eng) Mots-clés : Adaptive functioning  Autism spectrum disorder  Duplication 15q syndrome  Intellectual disability  Social communication Index. décimale : PER Périodiques Résumé : BACKGROUND: One of the most common genetic variants associated with autism spectrum disorder (ASD) are duplications of chromosome 15q11.2-q13.1 (Dup15q syndrome). To identify distinctive developmental and behavioral features in Dup15q syndrome, we examined the social communication, adaptive, and cognitive skills in clinic-referred subjects and compared the characteristics of children with Dup15q syndrome to age/IQ-matched children with non-syndromic ASD. Behavior and development were also analyzed within the Dup15q group for differences related to copy number or epilepsy. METHODS: Participants included 13 children with Dup15q syndrome and 13 children with non-syndromic ASD, matched on chronological and mental age, ages 22 months-12 years. In the Dup15q group, ten participants had isodicentric and three had interstitial duplications. Four children had active epilepsy (all isodicentric). Participants were assessed for verbal and non-verbal cognition, ASD characteristics based on the Autism Diagnostic Observation Schedule (ADOS), and adaptive function based on the Vineland Adaptive Behavior Scales (VABS). Group comparisons were performed between Dup15q and ASD participants, as well as within the Dup15q group based on duplication type and epilepsy status. RESULTS: All children with Dup15q syndrome met the criteria for ASD; ASD severity scores were significantly lower than children in the non-syndromic ASD group. ADOS profiles demonstrated a relative strength in items related to social interest. Children with Dup15q syndrome also demonstrated significantly more impairment in motor and daily living skills. Within the Dup15q group, children with epilepsy demonstrated significantly lower cognitive and adaptive function than those without epilepsy. CONCLUSIONS: The relative strength observed in social interest and responsiveness in the context of impaired motor skills represents an important avenue for intervention, including aggressive treatment of epilepsy, early and consistent focus on motor skills, and intervention targeting joint attention and language within a play context, in order to build on social interest to further develop social communication abilities. Longitudinal research beginning in early development will elucidate the temporal relationships between developmental domains and neurological comorbidities in these children at high risk for neurodevelopmental disorders. En ligne : http://dx.doi.org/10.1186/s11689-016-9152-y Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=348 [article] Identification of a distinct developmental and behavioral profile in children with Dup15q syndrome [Texte imprimé et/ou numérique] / C. DISTEFANO, Auteur ; A. GULSRUD, Auteur ; S. HUBERTY, Auteur ; Connie KASARI, Auteur ; E. COOK, Auteur ; L. T. REITER, Auteur ; R. THIBERT, Auteur ; S. S. JESTE, Auteur . - p.19. Langues : Anglais (eng) in Journal of Neurodevelopmental Disorders > 8-1 (December 2016) . - p.19 Mots-clés : Adaptive functioning  Autism spectrum disorder  Duplication 15q syndrome  Intellectual disability  Social communication Index. décimale : PER Périodiques Résumé : BACKGROUND: One of the most common genetic variants associated with autism spectrum disorder (ASD) are duplications of chromosome 15q11.2-q13.1 (Dup15q syndrome). To identify distinctive developmental and behavioral features in Dup15q syndrome, we examined the social communication, adaptive, and cognitive skills in clinic-referred subjects and compared the characteristics of children with Dup15q syndrome to age/IQ-matched children with non-syndromic ASD. Behavior and development were also analyzed within the Dup15q group for differences related to copy number or epilepsy. METHODS: Participants included 13 children with Dup15q syndrome and 13 children with non-syndromic ASD, matched on chronological and mental age, ages 22 months-12 years. In the Dup15q group, ten participants had isodicentric and three had interstitial duplications. Four children had active epilepsy (all isodicentric). Participants were assessed for verbal and non-verbal cognition, ASD characteristics based on the Autism Diagnostic Observation Schedule (ADOS), and adaptive function based on the Vineland Adaptive Behavior Scales (VABS). Group comparisons were performed between Dup15q and ASD participants, as well as within the Dup15q group based on duplication type and epilepsy status. RESULTS: All children with Dup15q syndrome met the criteria for ASD; ASD severity scores were significantly lower than children in the non-syndromic ASD group. ADOS profiles demonstrated a relative strength in items related to social interest. Children with Dup15q syndrome also demonstrated significantly more impairment in motor and daily living skills. Within the Dup15q group, children with epilepsy demonstrated significantly lower cognitive and adaptive function than those without epilepsy. CONCLUSIONS: The relative strength observed in social interest and responsiveness in the context of impaired motor skills represents an important avenue for intervention, including aggressive treatment of epilepsy, early and consistent focus on motor skills, and intervention targeting joint attention and language within a play context, in order to build on social interest to further develop social communication abilities. Longitudinal research beginning in early development will elucidate the temporal relationships between developmental domains and neurological comorbidities in these children at high risk for neurodevelopmental disorders. En ligne : http://dx.doi.org/10.1186/s11689-016-9152-y Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=348

Implementing and evaluating early intervention for children with autism: Where are the gaps and what should we do? / Giacomo VIVANTI in Autism Research, 11-1 (January 2018)  

Public ISBD [article]  inAutism Research > 11-1 (January 2018) . - p.16-23 Titre : Implementing and evaluating early intervention for children with autism: Where are the gaps and what should we do? Type de document : Texte imprimé et/ou numérique Auteurs : Giacomo VIVANTI, Auteur ; Connie KASARI, Auteur ; Jonathan GREEN, Auteur ; David MANDELL, Auteur ; Melissa MAYE, Auteur ; Kristelle HUDRY, Auteur Article en page(s) : p.16-23 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Despite recent advances, the evidence base supporting early intervention for young children with autism spectrum disorder (ASD) remains relatively sparse. The International Society for Autism Research (INSAR) recently sponsored a Special Interest Group (SIG) on Implementing and Evaluating Community?Based Early Intervention. Across three meetings, in 2015, 2016, and 2017, conveners of this SIG engaged >200 members to identify knowledge gaps and research priorities for moving the field forward. Here, we summarize the perspectives that emerged from group discussion at the SIG meetings as represented by scholars working actively in the field. Despite encouraging progress, critical gaps and research priorities were identified across all the stages of intervention development and testing from conceptualization to community implementation. Key issues include the need for (a) formal theories to guide early intervention development, evaluation, and implementation; and alignment of intervention goals with scientific knowledge and societal changes that have occurred in the decades since interventions were originally developed; (b) increased focus on feasibility of treatment procedures and alignment with stakeholder values during pilot evaluations; (c) use of research designs that allow for comparisons of different interventions and formats, analyses of active ingredients of treatment, and identification of moderators and mediators of outcome; (d) use of community?partnered participatory research to guide adaptation of intervention models to community settings; (e) inclusion of constructs related to implementation processes and outcomes in treatment trials and; (f) an iterative approach to the progression of knowledge from intervention development to implementation. Autism Res 2018, 11: 16–23. © 2017 International Society for Autism Research, Wiley Periodicals, Inc. Lay Summary In this article, we summarize the themes discussed at the INSAR Special Interest Group (SIG) on Implementing and Evaluating Community?Based Early Intervention. Priorities for moving the field forward identified in the SIG included the need for (a) formal theories to guide the development and evaluation of interventions, (b) pilot evaluations that investigate feasibility and acceptability of interventions, (c) methodologies that allow us to determine for whom different interventions bring most benefit and why this is so, (d) strategies to include community members and other stakeholders in the process of developing and evaluating interventions, and (e) understanding of factors that make interventions more likely to be adopted and successfully implemented in the real world. En ligne : https://doi.org/10.1002/aur.1900 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=333 [article] Implementing and evaluating early intervention for children with autism: Where are the gaps and what should we do? [Texte imprimé et/ou numérique] / Giacomo VIVANTI, Auteur ; Connie KASARI, Auteur ; Jonathan GREEN, Auteur ; David MANDELL, Auteur ; Melissa MAYE, Auteur ; Kristelle HUDRY, Auteur . - p.16-23. Langues : Anglais (eng) in Autism Research > 11-1 (January 2018) . - p.16-23 Index. décimale : PER Périodiques Résumé : Despite recent advances, the evidence base supporting early intervention for young children with autism spectrum disorder (ASD) remains relatively sparse. The International Society for Autism Research (INSAR) recently sponsored a Special Interest Group (SIG) on Implementing and Evaluating Community?Based Early Intervention. Across three meetings, in 2015, 2016, and 2017, conveners of this SIG engaged >200 members to identify knowledge gaps and research priorities for moving the field forward. Here, we summarize the perspectives that emerged from group discussion at the SIG meetings as represented by scholars working actively in the field. Despite encouraging progress, critical gaps and research priorities were identified across all the stages of intervention development and testing from conceptualization to community implementation. Key issues include the need for (a) formal theories to guide early intervention development, evaluation, and implementation; and alignment of intervention goals with scientific knowledge and societal changes that have occurred in the decades since interventions were originally developed; (b) increased focus on feasibility of treatment procedures and alignment with stakeholder values during pilot evaluations; (c) use of research designs that allow for comparisons of different interventions and formats, analyses of active ingredients of treatment, and identification of moderators and mediators of outcome; (d) use of community?partnered participatory research to guide adaptation of intervention models to community settings; (e) inclusion of constructs related to implementation processes and outcomes in treatment trials and; (f) an iterative approach to the progression of knowledge from intervention development to implementation. Autism Res 2018, 11: 16–23. © 2017 International Society for Autism Research, Wiley Periodicals, Inc. Lay Summary In this article, we summarize the themes discussed at the INSAR Special Interest Group (SIG) on Implementing and Evaluating Community?Based Early Intervention. Priorities for moving the field forward identified in the SIG included the need for (a) formal theories to guide the development and evaluation of interventions, (b) pilot evaluations that investigate feasibility and acceptability of interventions, (c) methodologies that allow us to determine for whom different interventions bring most benefit and why this is so, (d) strategies to include community members and other stakeholders in the process of developing and evaluating interventions, and (e) understanding of factors that make interventions more likely to be adopted and successfully implemented in the real world. En ligne : https://doi.org/10.1002/aur.1900 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=333

Increasing Responsive Parent–Child Interactions and Joint Engagement: Comparing the Influence of Parent-Mediated Intervention and Parent Psychoeducation / Stephanie Y. SHIRE in Journal of Autism and Developmental Disorders, 46-5 (May 2016)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 46-5 (May 2016) . - p.1737-1747 Titre : Increasing Responsive Parent–Child Interactions and Joint Engagement: Comparing the Influence of Parent-Mediated Intervention and Parent Psychoeducation Type de document : Texte imprimé et/ou numérique Auteurs : Stephanie Y. SHIRE, Auteur ; Amanda GULSRUD, Auteur ; Connie KASARI, Auteur Article en page(s) : p.1737-1747 Langues : Anglais (eng) Mots-clés : Parent-mediated intervention  JASPER  Toddlers  Autism  Responsivity  Joint engagement Index. décimale : PER Périodiques Résumé : Enhancing immediate and contingent responding by caregivers to children’s signals is an important strategy to support social interactions between caregivers and their children with autism. Yet, there has been limited examination of parents’ responsive behaviour in association with children’s social behaviour post caregiver-mediated intervention. Eighty-five dyads were randomized to one of two 10-week caregiver-training interventions. Parent–child play interactions were coded for parental responsivity and children’s joint engagement. Significant gains in responsivity and time jointly engaged were found post JASPER parent-mediated intervention over a psychoeducation intervention. Further, combining higher levels of responsive behaviour with greater adoption of intervention strategies was associated with greater time jointly engaged. Findings encourage a focus on enhancing responsive behaviour in parent-mediated intervention models. En ligne : http://dx.doi.org/10.1007/s10803-016-2702-z Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=288 [article] Increasing Responsive Parent–Child Interactions and Joint Engagement: Comparing the Influence of Parent-Mediated Intervention and Parent Psychoeducation [Texte imprimé et/ou numérique] / Stephanie Y. SHIRE, Auteur ; Amanda GULSRUD, Auteur ; Connie KASARI, Auteur . - p.1737-1747. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 46-5 (May 2016) . - p.1737-1747 Mots-clés : Parent-mediated intervention  JASPER  Toddlers  Autism  Responsivity  Joint engagement Index. décimale : PER Périodiques Résumé : Enhancing immediate and contingent responding by caregivers to children’s signals is an important strategy to support social interactions between caregivers and their children with autism. Yet, there has been limited examination of parents’ responsive behaviour in association with children’s social behaviour post caregiver-mediated intervention. Eighty-five dyads were randomized to one of two 10-week caregiver-training interventions. Parent–child play interactions were coded for parental responsivity and children’s joint engagement. Significant gains in responsivity and time jointly engaged were found post JASPER parent-mediated intervention over a psychoeducation intervention. Further, combining higher levels of responsive behaviour with greater adoption of intervention strategies was associated with greater time jointly engaged. Findings encourage a focus on enhancing responsive behaviour in parent-mediated intervention models. En ligne : http://dx.doi.org/10.1007/s10803-016-2702-z Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=288

Interventions in schools for children with autism spectrum disorder: Methods and recommendations / Connie KASARI in Autism, 17-3 (May 2013)  

Public ISBD [article]  inAutism > 17-3 (May 2013) . - p.254-267 Titre : Interventions in schools for children with autism spectrum disorder: Methods and recommendations Type de document : Texte imprimé et/ou numérique Auteurs : Connie KASARI, Auteur ; Tristram SMITH, Auteur Article en page(s) : p.254-267 Langues : Anglais (eng) Mots-clés : autism  implementation science  intervention  school-based intervention  treatment effectiveness evaluation Index. décimale : PER Périodiques Résumé : Although researchers have identified many promising teaching strategies and intervention programs for children with autism spectrum disorder, research on implementation of these interventions in school settings has lagged. Barriers to implementation include incompletely developed interventions, limited evidence of their utility in promoting long-term and meaningful change, and poor fit with school environments. To overcome these barriers, interventions need to be detailed in manuals that identify key components yet allow for flexibility, and studies need to evaluate long-term, real-life outcomes. Innovative research strategies also may be important, particularly carrying out research on new interventions in school settings from the outset, conducting partial effectiveness trials in which study personnel administer interventions in school settings, using community-partnered participatory research approaches, and redesigning interventions in a modular format. En ligne : http://dx.doi.org/10.1177/1362361312470496 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=200 [article] Interventions in schools for children with autism spectrum disorder: Methods and recommendations [Texte imprimé et/ou numérique] / Connie KASARI, Auteur ; Tristram SMITH, Auteur . - p.254-267. Langues : Anglais (eng) in Autism > 17-3 (May 2013) . - p.254-267 Mots-clés : autism  implementation science  intervention  school-based intervention  treatment effectiveness evaluation Index. décimale : PER Périodiques Résumé : Although researchers have identified many promising teaching strategies and intervention programs for children with autism spectrum disorder, research on implementation of these interventions in school settings has lagged. Barriers to implementation include incompletely developed interventions, limited evidence of their utility in promoting long-term and meaningful change, and poor fit with school environments. To overcome these barriers, interventions need to be detailed in manuals that identify key components yet allow for flexibility, and studies need to evaluate long-term, real-life outcomes. Innovative research strategies also may be important, particularly carrying out research on new interventions in school settings from the outset, conducting partial effectiveness trials in which study personnel administer interventions in school settings, using community-partnered participatory research approaches, and redesigning interventions in a modular format. En ligne : http://dx.doi.org/10.1177/1362361312470496 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=200

Involvement or Isolation? The Social Networks of Children with Autism in Regular Classrooms / Brandt CHAMBERLAIN in Journal of Autism and Developmental Disorders, 37-2 (February 2007)  

Permalink

Isolating active ingredients in a parent-mediated social communication intervention for toddlers with autism spectrum disorder / Amanda C. GULSRUD in Journal of Child Psychology and Psychiatry, 57-5 (May 2016)  

Permalink

It’s who you know: Caregiver social networks predict service use among under-resourced children with autism / Amanda GULSRUD in Research in Autism Spectrum Disorders, 88 (October 2021)  

Permalink

Joint attention and symbolic play in young children with autism: a randomized controlled intervention study / Connie KASARI in Journal of Child Psychology and Psychiatry, 47-6 (June 2006)  

Permalink

Joint Attention Intervention for Children with Autism / Connie KASARI

Permalink

Joint engagement is a potential mechanism leading to increased initiations of joint attention and downstream effects on language: JASPER early intervention for children with ASD / W. SHIH in Journal of Child Psychology and Psychiatry, 62-10 (October 2021)  

Permalink

Making the connection: randomized controlled trial of social skills at school for children with autism spectrum disorders / Connie KASARI in Journal of Child Psychology and Psychiatry, 53-4 (April 2012)  

Permalink

Measuring social communication behaviors as a treatment endpoint in individuals with autism spectrum disorder / Evdokia ANAGNOSTOU in Autism, 19-5 (July 2015)  

Permalink

Minimally Verbal School-Aged Children with Autism Spectrum Disorder: The Neglected End of the Spectrum / Helen TAGER-FLUSBERG in Autism Research, 6-6 (December 2013)  

Permalink

Naturalistic Developmental Behavioral Interventions: Empirically Validated Treatments for Autism Spectrum Disorder / Laura SCHREIBMAN in Journal of Autism and Developmental Disorders, 45-8 (August 2015)  

Permalink

---

1 2 3 4 5 6 (31 - 45 / 87) Par page : 25 50 Tout afficher