Age-Related Trajectories of Autistic Traits in Children With Angelman Syndrome / Sabine E. MOUS ; Leontine W. TEN HOOPEN ; André B. RIETMAN ; Kamil R. HIRALAL ; Karen G. C. B. BINDELS-DE HEUS ; Pieter F. A. DE NIJS ; Theresa C. MOHR ; Eline J. LENS ; Manon H. J. HILLEGERS ; Henriette A. MOLL ; Marie-Claire Y. DE WIT ; Gwen C. DIELEMAN in Autism Research, 18-4 (April 2025)  

Public ISBD [article]  inAutism Research > 18-4 (April 2025) . - p.870-880 Titre : Age-Related Trajectories of Autistic Traits in Children With Angelman Syndrome Type de document : Texte imprimé et/ou numérique Auteurs : Sabine E. MOUS, Auteur ; Leontine W. TEN HOOPEN, Auteur ; André B. RIETMAN, Auteur ; Kamil R. HIRALAL, Auteur ; Karen G. C. B. BINDELS-DE HEUS, Auteur ; Pieter F. A. DE NIJS, Auteur ; Theresa C. MOHR, Auteur ; Eline J. LENS, Auteur ; Manon H. J. HILLEGERS, Auteur ; Henriette A. MOLL, Auteur ; Marie-Claire Y. DE WIT, Auteur ; Gwen C. DIELEMAN, Auteur Article en page(s) : p.870-880 Langues : Anglais (eng) Mots-clés : Angelman syndrome  Autism Spectrum Disorder  autistic traits  longitudinal  repeated measures  sensory processing Index. décimale : PER Périodiques Résumé : ABSTRACT Angelman syndrome (AS) is a rare neurogenetic disorder. Previous studies indicate a high prevalence of autism spectrum disorder (ASD) with considerable variability. Little is known regarding the longitudinal trajectory of autistic traits. We aim to investigate autistic traits, the effect of age on these traits, and associated features in AS children. This (partly) longitudinal clinical record study at the ENCORE Expertise Center involved 107 AS children aged 2?18 with one (N?=?107), two (N?=?49), or three (N?=?14) measurements. Autistic traits and sensory processing issues were assessed using various instruments, and DSM classifications were used descriptively. Covariates were genotype, gender, and epilepsy. Results indicate a high prevalence of autistic traits and sensory processing issues. Children with the deletion genotype exhibited more autistic traits. Autism Diagnostic Observation Schedule (ADOS) classifications indicated higher rates of ASD compared to clinician DSM classifications. Autistic traits generally remained stable over time, except that ADOS scores significantly decreased for children with the UBE3A mutation genotype, and in the social affect domain for the entire group. In conclusion, incorporating the assessment of autistic traits and sensory processing into clinical practice for AS is important to inform adaptations of the environment to meet the child?s needs. Additionally, clinicians and researchers should be mindful of the potential for overestimating ASD traits in AS when relying on the ADOS. ASD diagnosis in AS should integrate multiple diagnostic instruments, diverse hetero-anamnestic sources, and multidisciplinary expert opinions. En ligne : https://doi.org/10.1002/aur.70017 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=554 [article] Age-Related Trajectories of Autistic Traits in Children With Angelman Syndrome [Texte imprimé et/ou numérique] / Sabine E. MOUS, Auteur ; Leontine W. TEN HOOPEN, Auteur ; André B. RIETMAN, Auteur ; Kamil R. HIRALAL, Auteur ; Karen G. C. B. BINDELS-DE HEUS, Auteur ; Pieter F. A. DE NIJS, Auteur ; Theresa C. MOHR, Auteur ; Eline J. LENS, Auteur ; Manon H. J. HILLEGERS, Auteur ; Henriette A. MOLL, Auteur ; Marie-Claire Y. DE WIT, Auteur ; Gwen C. DIELEMAN, Auteur . - p.870-880. Langues : Anglais (eng) in Autism Research > 18-4 (April 2025) . - p.870-880 Mots-clés : Angelman syndrome  Autism Spectrum Disorder  autistic traits  longitudinal  repeated measures  sensory processing Index. décimale : PER Périodiques Résumé : ABSTRACT Angelman syndrome (AS) is a rare neurogenetic disorder. Previous studies indicate a high prevalence of autism spectrum disorder (ASD) with considerable variability. Little is known regarding the longitudinal trajectory of autistic traits. We aim to investigate autistic traits, the effect of age on these traits, and associated features in AS children. This (partly) longitudinal clinical record study at the ENCORE Expertise Center involved 107 AS children aged 2?18 with one (N?=?107), two (N?=?49), or three (N?=?14) measurements. Autistic traits and sensory processing issues were assessed using various instruments, and DSM classifications were used descriptively. Covariates were genotype, gender, and epilepsy. Results indicate a high prevalence of autistic traits and sensory processing issues. Children with the deletion genotype exhibited more autistic traits. Autism Diagnostic Observation Schedule (ADOS) classifications indicated higher rates of ASD compared to clinician DSM classifications. Autistic traits generally remained stable over time, except that ADOS scores significantly decreased for children with the UBE3A mutation genotype, and in the social affect domain for the entire group. In conclusion, incorporating the assessment of autistic traits and sensory processing into clinical practice for AS is important to inform adaptations of the environment to meet the child?s needs. Additionally, clinicians and researchers should be mindful of the potential for overestimating ASD traits in AS when relying on the ADOS. ASD diagnosis in AS should integrate multiple diagnostic instruments, diverse hetero-anamnestic sources, and multidisciplinary expert opinions. En ligne : https://doi.org/10.1002/aur.70017 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=554

Caring for Children with an Autism Spectrum Disorder: Factors Associating with Health- and Care-Related Quality of Life of the Caregivers / Leontine W. TEN HOOPEN in Journal of Autism and Developmental Disorders, 52-11 (November 2022)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 52-11 (November 2022) . - p.4665-4678 Titre : Caring for Children with an Autism Spectrum Disorder: Factors Associating with Health- and Care-Related Quality of Life of the Caregivers Type de document : Texte imprimé et/ou numérique Auteurs : Leontine W. TEN HOOPEN, Auteur ; Pieter F. A. DE NIJS, Auteur ; Jorieke DUVEKOT, Auteur ; Kirstin GREAVES-LORD, Auteur ; Manon H. J. HILLEGERS, Auteur ; Werner B. F. BROUWER, Auteur ; Leona HAKKAART-VAN ROIJEN, Auteur Article en page(s) : p.4665-4678 Langues : Anglais (eng) Mots-clés : Autism Spectrum Disorder  Caregivers  Child  Humans  Parenting  Quality of Life  Surveys and Questionnaires  Autism spectrum disorder (ASD)  Caregiver  CarerQol  Children  Eq-5d  Health-related quality of life  research, authorship, and/or publication of this article. Index. décimale : PER Périodiques Résumé : This study investigated the association of child, caregiver, and caregiving measurements with the quality of life (QoL) in 81 caregivers (mostly parents) of clinically referred children with autism spectrum disorder (ASD). We used the EuroQol five-dimensional (EQ-5D) questionnaire and the care-related QoL questionnaire (CarerQol) to respectively assess health-related QoL and care-related QoL. Health-related QoL was associated with the caregiver's internalizing problems and adaptive coping, explaining 38% of the variance. Parenting stress and adaptive coping were associated with the care-related QoL and explained 60% of the variance. Child variables were not associated with the caregiver's health- and care-related QoL if caregiver and caregiving variables were taken into account. Findings indicate the importance of the caregiver's mental health, coping, and parenting stress in caring for children with ASD. En ligne : http://dx.doi.org/10.1007/s10803-021-05336-7 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=489 [article] Caring for Children with an Autism Spectrum Disorder: Factors Associating with Health- and Care-Related Quality of Life of the Caregivers [Texte imprimé et/ou numérique] / Leontine W. TEN HOOPEN, Auteur ; Pieter F. A. DE NIJS, Auteur ; Jorieke DUVEKOT, Auteur ; Kirstin GREAVES-LORD, Auteur ; Manon H. J. HILLEGERS, Auteur ; Werner B. F. BROUWER, Auteur ; Leona HAKKAART-VAN ROIJEN, Auteur . - p.4665-4678. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 52-11 (November 2022) . - p.4665-4678 Mots-clés : Autism Spectrum Disorder  Caregivers  Child  Humans  Parenting  Quality of Life  Surveys and Questionnaires  Autism spectrum disorder (ASD)  Caregiver  CarerQol  Children  Eq-5d  Health-related quality of life  research, authorship, and/or publication of this article. Index. décimale : PER Périodiques Résumé : This study investigated the association of child, caregiver, and caregiving measurements with the quality of life (QoL) in 81 caregivers (mostly parents) of clinically referred children with autism spectrum disorder (ASD). We used the EuroQol five-dimensional (EQ-5D) questionnaire and the care-related QoL questionnaire (CarerQol) to respectively assess health-related QoL and care-related QoL. Health-related QoL was associated with the caregiver's internalizing problems and adaptive coping, explaining 38% of the variance. Parenting stress and adaptive coping were associated with the care-related QoL and explained 60% of the variance. Child variables were not associated with the caregiver's health- and care-related QoL if caregiver and caregiving variables were taken into account. Findings indicate the importance of the caregiver's mental health, coping, and parenting stress in caring for children with ASD. En ligne : http://dx.doi.org/10.1007/s10803-021-05336-7 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=489

Children with an Autism Spectrum Disorder and Their Caregivers: Capturing Health-Related and Care-Related Quality of Life / Leontine W. TEN HOOPEN in Journal of Autism and Developmental Disorders, 50-1 (January 2020)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 50-1 (January 2020) . - p.263-277 Titre : Children with an Autism Spectrum Disorder and Their Caregivers: Capturing Health-Related and Care-Related Quality of Life Type de document : Texte imprimé et/ou numérique Auteurs : Leontine W. TEN HOOPEN, Auteur ; Pieter F. A. DE NIJS, Auteur ; Jorieke DUVEKOT, Auteur ; Kirstin GREAVES-LORD, Auteur ; Manon H. J. HILLEGERS, Auteur ; Werner B. F. BROUWER, Auteur ; Leona HAKKAART-VAN ROIJEN, Auteur Article en page(s) : p.263-277 Langues : Anglais (eng) Mots-clés : Autism spectrum disorder (ASD)  Caregiver burden  CarerQol  Children  EuroQol five-dimensional (EQ-5D) questionnaire  Health-related quality of life Index. décimale : PER Périodiques Résumé : This study investigated health-related QoL (HRQoL) and care-related quality of life (CarerQol) in clinically referred children with an autism spectrum disorder (ASD), and their primary and secondary caregivers. The EuroQol five-dimensional (EQ-5D) and the CarerQol questionnaires were used to respectively measure health-related QoL and care-related QoL. Primary caregivers reported pain/discomfort (42%) and anxiety/depression (40%). In caring, they mostly experienced problems in the relationship with the child (84%), and in combining care with daily activities (51%). Children with ASD had a relevantly lower QoL. Despite negative effects, almost all caregivers (96%) derived fulfillment from caring for their affected children. HRQoL and CarerQol reports of primary caregivers and children were correlated, both providing useful information to ASD measurement and treatment. En ligne : http://dx.doi.org/10.1007/s10803-019-04249-w Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=414 [article] Children with an Autism Spectrum Disorder and Their Caregivers: Capturing Health-Related and Care-Related Quality of Life [Texte imprimé et/ou numérique] / Leontine W. TEN HOOPEN, Auteur ; Pieter F. A. DE NIJS, Auteur ; Jorieke DUVEKOT, Auteur ; Kirstin GREAVES-LORD, Auteur ; Manon H. J. HILLEGERS, Auteur ; Werner B. F. BROUWER, Auteur ; Leona HAKKAART-VAN ROIJEN, Auteur . - p.263-277. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 50-1 (January 2020) . - p.263-277 Mots-clés : Autism spectrum disorder (ASD)  Caregiver burden  CarerQol  Children  EuroQol five-dimensional (EQ-5D) questionnaire  Health-related quality of life Index. décimale : PER Périodiques Résumé : This study investigated health-related QoL (HRQoL) and care-related quality of life (CarerQol) in clinically referred children with an autism spectrum disorder (ASD), and their primary and secondary caregivers. The EuroQol five-dimensional (EQ-5D) and the CarerQol questionnaires were used to respectively measure health-related QoL and care-related QoL. Primary caregivers reported pain/discomfort (42%) and anxiety/depression (40%). In caring, they mostly experienced problems in the relationship with the child (84%), and in combining care with daily activities (51%). Children with ASD had a relevantly lower QoL. Despite negative effects, almost all caregivers (96%) derived fulfillment from caring for their affected children. HRQoL and CarerQol reports of primary caregivers and children were correlated, both providing useful information to ASD measurement and treatment. En ligne : http://dx.doi.org/10.1007/s10803-019-04249-w Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=414

Children with Autism Spectrum Disorder in Times of COVID-19: Examining Emotional and Behavioral Problems, Parental Well-Being, and Resilience / Donna A. de Maat ; Ruth VAN DER HALLEN ; Pieter F. A. DE NIJS ; Kirsten VISSER ; Dennis BASTIAANSEN ; Femke L. Truijens ; Elisabeth H. M. van Rijen ; Wietske Ester ; Peter PRINZIE ; Pauline W. JANSEN ; Linda P. DEKKER 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.752-763 Titre : Children with Autism Spectrum Disorder in Times of COVID-19: Examining Emotional and Behavioral Problems, Parental Well-Being, and Resilience : Journal of Autism and Developmental Disorders Type de document : Texte imprimé et/ou numérique Auteurs : Donna A. de Maat, Auteur ; Ruth VAN DER HALLEN, Auteur ; Pieter F. A. DE NIJS, Auteur ; Kirsten VISSER, Auteur ; Dennis BASTIAANSEN, Auteur ; Femke L. Truijens, Auteur ; Elisabeth H. M. van Rijen, Auteur ; Wietske Ester, Auteur ; Peter PRINZIE, Auteur ; Pauline W. JANSEN, Auteur ; Linda P. DEKKER, Auteur Article en page(s) : p.752-763 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : This longitudinal study assessed the impact of the COVID-19 pandemic on children with autism spectrum disorder (ASD; n = 62; Mage = 13 years) by measuring emotional and behavioral problems before and during the pandemic, and by comparing this change to a matched sample of children without ASD (n = 213; Mage = 16 years). Moreover, we examined whether indicators of parental well-being promoted resilience of children with ASD. Results showed that the mean change in problems did not differ between children with and without ASD. Importantly, some children showed an increase in problems, while others showed resilience. Parental well-being indicators were not related to resilience among children with ASD. The interindividual variability in responses, particularly among children with ASD, highlights the need for personalized support. En ligne : https://doi.org/10.1007/s10803-022-05846-y Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=548 [article] Children with Autism Spectrum Disorder in Times of COVID-19: Examining Emotional and Behavioral Problems, Parental Well-Being, and Resilience : Journal of Autism and Developmental Disorders [Texte imprimé et/ou numérique] / Donna A. de Maat, Auteur ; Ruth VAN DER HALLEN, Auteur ; Pieter F. A. DE NIJS, Auteur ; Kirsten VISSER, Auteur ; Dennis BASTIAANSEN, Auteur ; Femke L. Truijens, Auteur ; Elisabeth H. M. van Rijen, Auteur ; Wietske Ester, Auteur ; Peter PRINZIE, Auteur ; Pauline W. JANSEN, Auteur ; Linda P. DEKKER, Auteur . - p.752-763. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 55-2 (February 2025) . - p.752-763 Index. décimale : PER Périodiques Résumé : This longitudinal study assessed the impact of the COVID-19 pandemic on children with autism spectrum disorder (ASD; n = 62; Mage = 13 years) by measuring emotional and behavioral problems before and during the pandemic, and by comparing this change to a matched sample of children without ASD (n = 213; Mage = 16 years). Moreover, we examined whether indicators of parental well-being promoted resilience of children with ASD. Results showed that the mean change in problems did not differ between children with and without ASD. Importantly, some children showed an increase in problems, while others showed resilience. Parental well-being indicators were not related to resilience among children with ASD. The interindividual variability in responses, particularly among children with ASD, highlights the need for personalized support. En ligne : https://doi.org/10.1007/s10803-022-05846-y Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=548

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