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 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] / 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

Associations between autism traits and family functioning over time in autistic and non-autistic children / Leontine W. TEN HOOPEN in Autism, 27-7 (October 2023)  

Public ISBD [article]  inAutism > 27-7 (October 2023) . - p.2035-2047 Titre : Associations between autism traits and family functioning over time in autistic and non-autistic children Type de document : texte imprimé Auteurs : Leontine W. TEN HOOPEN, Auteur ; Pieter F.A. DE NIJS, Auteur ; Geerte SLAPPENDEL, Auteur ; Jan VAN DER ENDE, Auteur ; Dennis BASTIAANSEN, Auteur ; Kirstin GREAVES-LORD, Auteur ; Leona HAKKAART-VAN ROIJEN, Auteur ; Manon H.J. HILLEGERS, Auteur Article en page(s) : p.2035-2047 Langues : Anglais (eng) Mots-clés : autism  caregivers  children  family functioning  longitudinal  parenting  traits Index. décimale : PER Périodiques Résumé : To explore associations between autism traits and family functioning over time, we studied longitudinal data of a mixed group of 168 clinically referred autistic and non-autistic children. Cross-lagged models showed a significant association between fewer autism traits at the diagnostic assessment and better family functioning 1 year later for the whole group, independently of children s internalizing or externalizing behavior. When splitting the group into autistic children (58%) and non-autistic children (42%) based on an autism diagnosis, this association was only significant in the subgroup of non-autistic children with autism traits. We hypothesized that the needs of families experiencing difficulty understanding and adjusting to their children with autism traits, but no clinical autism diagnosis, might be unmet without the training or support facilities offered to families with autistic children. Although further research is needed to explore this association, clinicians may also consider supporting families of non-autistic children with autism traits to prevent family functioning problems. Because high autism trait levels in non-autistic children may be of a different origin than autism, for example, other neurodevelopmental or mental health problems, family training or support should be tailored to the child?s underlying difficulties.Lay AbstractLittle is known about family functioning over time when raising a child with autism traits, with or without a clinical autism diagnosis. Therefore, we asked caregivers-mostly parents-of a group of 168 children about the family functioning and the child?s emotional and behavioral characteristics, as well as autistic traits, twice with about 1 year in between. For numerous reasons, the children were referred to youth mental health care centers, including child and adolescent psychiatric services. Care as usual was offered after the diagnostic assessment if a clinical diagnosis was the assessment outcome. Caregivers reported less problematic family functioning in children with fewer autism traits over time. The child?s additional emotional or behavioral characteristics did not seem to influence this relation. Furthermore, we split the whole group into autistic children with a clinical autism diagnosis (58%) and non-autistic children with autism traits but without a clinical diagnosis (42%) to see whether we would find the same results in both groups. Surprisingly, the relation between family functioning and the level of a child?s autism traits only held for the subgroup of non-autistic children with autism traits. Thus, raising children with autism traits without a clinical diagnosis may affect family functioning over time. We think that families might have difficulty understanding and adjusting to the autism traits of their children but are lacking the support that is exclusively offered to families of children with a clinical autism diagnosis. We must be cautious because we do not know whether there is a causal relation. Although further research is needed to explore and learn to understand this result, clinicians might consider offering support to families of children with subthreshold autism to prevent problems in family functioning. Because high autism trait levels in non-autistic children may be of a different origin than autism, for example, other neurodevelopmental or mental health problems, family training or support should be tailored to the child?s underlying difficulties. En ligne : http://dx.doi.org/10.1177/13623613231151784 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=510 [article] Associations between autism traits and family functioning over time in autistic and non-autistic children [texte imprimé] / Leontine W. TEN HOOPEN, Auteur ; Pieter F.A. DE NIJS, Auteur ; Geerte SLAPPENDEL, Auteur ; Jan VAN DER ENDE, Auteur ; Dennis BASTIAANSEN, Auteur ; Kirstin GREAVES-LORD, Auteur ; Leona HAKKAART-VAN ROIJEN, Auteur ; Manon H.J. HILLEGERS, Auteur . - p.2035-2047. Langues : Anglais (eng) in Autism > 27-7 (October 2023) . - p.2035-2047 Mots-clés : autism  caregivers  children  family functioning  longitudinal  parenting  traits Index. décimale : PER Périodiques Résumé : To explore associations between autism traits and family functioning over time, we studied longitudinal data of a mixed group of 168 clinically referred autistic and non-autistic children. Cross-lagged models showed a significant association between fewer autism traits at the diagnostic assessment and better family functioning 1 year later for the whole group, independently of children s internalizing or externalizing behavior. When splitting the group into autistic children (58%) and non-autistic children (42%) based on an autism diagnosis, this association was only significant in the subgroup of non-autistic children with autism traits. We hypothesized that the needs of families experiencing difficulty understanding and adjusting to their children with autism traits, but no clinical autism diagnosis, might be unmet without the training or support facilities offered to families with autistic children. Although further research is needed to explore this association, clinicians may also consider supporting families of non-autistic children with autism traits to prevent family functioning problems. Because high autism trait levels in non-autistic children may be of a different origin than autism, for example, other neurodevelopmental or mental health problems, family training or support should be tailored to the child?s underlying difficulties.Lay AbstractLittle is known about family functioning over time when raising a child with autism traits, with or without a clinical autism diagnosis. Therefore, we asked caregivers-mostly parents-of a group of 168 children about the family functioning and the child?s emotional and behavioral characteristics, as well as autistic traits, twice with about 1 year in between. For numerous reasons, the children were referred to youth mental health care centers, including child and adolescent psychiatric services. Care as usual was offered after the diagnostic assessment if a clinical diagnosis was the assessment outcome. Caregivers reported less problematic family functioning in children with fewer autism traits over time. The child?s additional emotional or behavioral characteristics did not seem to influence this relation. Furthermore, we split the whole group into autistic children with a clinical autism diagnosis (58%) and non-autistic children with autism traits but without a clinical diagnosis (42%) to see whether we would find the same results in both groups. Surprisingly, the relation between family functioning and the level of a child?s autism traits only held for the subgroup of non-autistic children with autism traits. Thus, raising children with autism traits without a clinical diagnosis may affect family functioning over time. We think that families might have difficulty understanding and adjusting to the autism traits of their children but are lacking the support that is exclusively offered to families of children with a clinical autism diagnosis. We must be cautious because we do not know whether there is a causal relation. Although further research is needed to explore and learn to understand this result, clinicians might consider offering support to families of children with subthreshold autism to prevent problems in family functioning. Because high autism trait levels in non-autistic children may be of a different origin than autism, for example, other neurodevelopmental or mental health problems, family training or support should be tailored to the child?s underlying difficulties. En ligne : http://dx.doi.org/10.1177/13623613231151784 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=510

Autism Spectrum Disorder in an Unselected Cohort of Children with Neurofibromatosis Type 1 (NF1) / S. EIJK in Journal of Autism and Developmental Disorders, 48-7 (July 2018)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 48-7 (July 2018) . - p.2278-2285 Titre : Autism Spectrum Disorder in an Unselected Cohort of Children with Neurofibromatosis Type 1 (NF1) Type de document : texte imprimé Auteurs : S. EIJK, Auteur ; Sabine E. MOUS, Auteur ; Gwen C. DIELEMAN, Auteur ; Bram DIERCKX, Auteur ; André B. RIETMAN, Auteur ; Pieter F.A. DE NIJS, Auteur ; Leontine W. TEN HOOPEN, Auteur ; R. VAN MINKELEN, Auteur ; Ype ELGERSMA, Auteur ; Coriene E. CATSMAN-BERREVOETS, Auteur ; Rianne OOSTENBRINK, Auteur ; J.S. LEGERSTEE, Auteur Article en page(s) : p.2278-2285 Langues : Anglais (eng) Mots-clés : Autism diagnostic observation schedule  Autism spectrum disorder  Autistic traits  Neurofibromatosis type 1  Prevalence  Social responsiveness scale Index. décimale : PER Périodiques Résumé : In a non-selected sample of children with Neurofibromatosis type 1 (NF1) the prevalence rate of autism spectrum disorder (ASD) and predictive value of an observational (ADOS)-and questionnaire-based screening instrument were assessed. Complete data was available for 128 children. The prevalence rate for clinical ASD was 10.9%, which is clearly higher than in the general population. This prevalence rate is presumably more accurate than in previous studies that examined children with NF1 with an ASD presumption or solely based on screening instruments. The combined observational- and screening based classifications demonstrated the highest positive predictive value for DSM-IV diagnosis, highlighting the importance of using both instruments in children with NF1. En ligne : http://dx.doi.org/10.1007/s10803-018-3478-0 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=367 [article] Autism Spectrum Disorder in an Unselected Cohort of Children with Neurofibromatosis Type 1 (NF1) [texte imprimé] / S. EIJK, Auteur ; Sabine E. MOUS, Auteur ; Gwen C. DIELEMAN, Auteur ; Bram DIERCKX, Auteur ; André B. RIETMAN, Auteur ; Pieter F.A. DE NIJS, Auteur ; Leontine W. TEN HOOPEN, Auteur ; R. VAN MINKELEN, Auteur ; Ype ELGERSMA, Auteur ; Coriene E. CATSMAN-BERREVOETS, Auteur ; Rianne OOSTENBRINK, Auteur ; J.S. LEGERSTEE, Auteur . - p.2278-2285. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 48-7 (July 2018) . - p.2278-2285 Mots-clés : Autism diagnostic observation schedule  Autism spectrum disorder  Autistic traits  Neurofibromatosis type 1  Prevalence  Social responsiveness scale Index. décimale : PER Périodiques Résumé : In a non-selected sample of children with Neurofibromatosis type 1 (NF1) the prevalence rate of autism spectrum disorder (ASD) and predictive value of an observational (ADOS)-and questionnaire-based screening instrument were assessed. Complete data was available for 128 children. The prevalence rate for clinical ASD was 10.9%, which is clearly higher than in the general population. This prevalence rate is presumably more accurate than in previous studies that examined children with NF1 with an ASD presumption or solely based on screening instruments. The combined observational- and screening based classifications demonstrated the highest positive predictive value for DSM-IV diagnosis, highlighting the importance of using both instruments in children with NF1. En ligne : http://dx.doi.org/10.1007/s10803-018-3478-0 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=367

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 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] / 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 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] / 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

Design and Cohort Characteristics of the Social Spectrum Study: A Multicenter Study of the Autism Spectrum Among Clinically Referred Children / Jorieke DUVEKOT in Journal of Autism and Developmental Disorders, 47-1 (January 2017)  

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Outcome measures in Angelman syndrome / Doesjka A. HAGENAAR in Journal of Neurodevelopmental Disorders, 16 (2024)  

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