Impact of a Genetic Diagnosis for a Child?s Autism on Parental Perceptions / Anna KARLSEN ; Benjamin HUBER ; Alina LEVINE ; Amanie SALEM ; L. Casey WHITE ; Marti LUBY ; Ekaterina Bezborodko ; Sabrina XIAO ; Wendy K. CHUNG ; Robert L. KLITZMAN ; Paul S. APPELBAUM in Journal of Autism and Developmental Disorders, 55-5 (May 2025)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 55-5 (May 2025) . - p.1809-1823 Titre : Impact of a Genetic Diagnosis for a Child?s Autism on Parental Perceptions Type de document : Texte imprimé et/ou numérique Auteurs : Anna KARLSEN, Auteur ; Benjamin HUBER, Auteur ; Alina LEVINE, Auteur ; Amanie SALEM, Auteur ; L. Casey WHITE, Auteur ; Marti LUBY, Auteur ; Ekaterina Bezborodko, Auteur ; Sabrina XIAO, Auteur ; Wendy K. CHUNG, Auteur ; Robert L. KLITZMAN, Auteur ; Paul S. APPELBAUM, Auteur Article en page(s) : p.1809-1823 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Genetic testing is recommended as part of an autism assessment, and most parents support genetic testing for their minor children. However, the impact on parents of receiving a monogenetic/ copy number variant diagnosis for autism in their child is not well understood. To explore this, we surveyed and interviewed parents of children in the SPARK study, a study of autism that includes genetic testing. Surveys were administered one month before and one and 12 months after parents received their child?s genetic result. Interviews were conducted approximately one month after results disclosure. A genetic diagnosis (GD) for their child appeared to reduce parents' sense of self-blame and feelings of guilt, and this impact was relatively stable. The data also indicate a modest impact on parents' actions related to the condition, perceptions of themselves, and some aspects of life planning for their child, as measured by quantitative instruments at one month and 12 months after receipt of results. Other measures of parental identity and expectations for their child, in contrast, showed little change following receipt of genetic findings. Overall, parents who were told that no GD was identified showed minimal changes in their responses over time. These results suggest a discernable but relatively limited impact of genetic test results on parents of children with autism. These results should be reassuring to clinicians caring for children with autism and are consistent with studies in other areas of medicine that have suggested that genetic results tend to have fewer effects-negative or positive-than were anticipated. En ligne : https://doi.org/10.1007/s10803-024-06273-x Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=554 [article] Impact of a Genetic Diagnosis for a Child?s Autism on Parental Perceptions [Texte imprimé et/ou numérique] / Anna KARLSEN, Auteur ; Benjamin HUBER, Auteur ; Alina LEVINE, Auteur ; Amanie SALEM, Auteur ; L. Casey WHITE, Auteur ; Marti LUBY, Auteur ; Ekaterina Bezborodko, Auteur ; Sabrina XIAO, Auteur ; Wendy K. CHUNG, Auteur ; Robert L. KLITZMAN, Auteur ; Paul S. APPELBAUM, Auteur . - p.1809-1823. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 55-5 (May 2025) . - p.1809-1823 Index. décimale : PER Périodiques Résumé : Genetic testing is recommended as part of an autism assessment, and most parents support genetic testing for their minor children. However, the impact on parents of receiving a monogenetic/ copy number variant diagnosis for autism in their child is not well understood. To explore this, we surveyed and interviewed parents of children in the SPARK study, a study of autism that includes genetic testing. Surveys were administered one month before and one and 12 months after parents received their child?s genetic result. Interviews were conducted approximately one month after results disclosure. A genetic diagnosis (GD) for their child appeared to reduce parents' sense of self-blame and feelings of guilt, and this impact was relatively stable. The data also indicate a modest impact on parents' actions related to the condition, perceptions of themselves, and some aspects of life planning for their child, as measured by quantitative instruments at one month and 12 months after receipt of results. Other measures of parental identity and expectations for their child, in contrast, showed little change following receipt of genetic findings. Overall, parents who were told that no GD was identified showed minimal changes in their responses over time. These results suggest a discernable but relatively limited impact of genetic test results on parents of children with autism. These results should be reassuring to clinicians caring for children with autism and are consistent with studies in other areas of medicine that have suggested that genetic results tend to have fewer effects-negative or positive-than were anticipated. En ligne : https://doi.org/10.1007/s10803-024-06273-x Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=554

Impact of Receiving Genetic Diagnoses on Parents' Perceptions of Their Children with Autism and Intellectual Disability / Robert Klitzman ; Ekaterina Bezborodko ; Wendy K. CHUNG ; Paul S. APPELBAUM in Journal of Autism and Developmental Disorders, 55-1 (January 2025)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 55-1 (January 2025) . - p.284-296 Titre : Impact of Receiving Genetic Diagnoses on Parents' Perceptions of Their Children with Autism and Intellectual Disability : Journal of Autism and Developmental Disorders Type de document : Texte imprimé et/ou numérique Auteurs : Robert Klitzman, Auteur ; Ekaterina Bezborodko, Auteur ; Wendy K. CHUNG, Auteur ; Paul S. APPELBAUM, Auteur Article en page(s) : p.284-296 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : To assess whether genetic test results identifying the cause of a child?s autism, when accompanied by other neurodevelopmental disorders (NDD), including intellectual disability, alter how parents perceive and treat their child. 28 parents of 22 individuals with autism (mean age: 15 years), usually with other NDDs, were interviewed after receiving genetic diagnoses indicating a de novo mutation through the Simons Foundation Powering Autism Research for Knowledge study. Diagnosis of a de novo genetic variant can alter parental perceptions of offspring with autism and other NDDs. Parents often blamed their child less, saw their child as less in control of symptoms, and developed more patience, framing expectations accordingly. Parents had mixed feelings about receiving genetic diagnoses, with sadness sometimes accompanying reframed expectations. Genetic diagnoses could change views of the child among extended family members, teachers, social service agencies, insurers, and broader communities and society. Genetic testing might also reduce delays in diagnoses of autism among African American, Latino and other children. These data, the first to examine several critical aspects of how parents and others view children with autism and other NDDs after receiving genetic diagnoses, highlight vital needs for education of multiple stakeholders (including geneticists, other physicians, genetic counselors, parents, individuals with autism, social service agencies, insurers, policymakers, and the broader public), research (to include perspectives of extended family members, insurers, social service agencies and teachers) and practice (to increase recognition and awareness of the potential benefits and effects of genetic testing for such children). En ligne : https://doi.org/10.1007/s10803-023-06195-0 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=546 [article] Impact of Receiving Genetic Diagnoses on Parents' Perceptions of Their Children with Autism and Intellectual Disability : Journal of Autism and Developmental Disorders [Texte imprimé et/ou numérique] / Robert Klitzman, Auteur ; Ekaterina Bezborodko, Auteur ; Wendy K. CHUNG, Auteur ; Paul S. APPELBAUM, Auteur . - p.284-296. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 55-1 (January 2025) . - p.284-296 Index. décimale : PER Périodiques Résumé : To assess whether genetic test results identifying the cause of a child?s autism, when accompanied by other neurodevelopmental disorders (NDD), including intellectual disability, alter how parents perceive and treat their child. 28 parents of 22 individuals with autism (mean age: 15 years), usually with other NDDs, were interviewed after receiving genetic diagnoses indicating a de novo mutation through the Simons Foundation Powering Autism Research for Knowledge study. Diagnosis of a de novo genetic variant can alter parental perceptions of offspring with autism and other NDDs. Parents often blamed their child less, saw their child as less in control of symptoms, and developed more patience, framing expectations accordingly. Parents had mixed feelings about receiving genetic diagnoses, with sadness sometimes accompanying reframed expectations. Genetic diagnoses could change views of the child among extended family members, teachers, social service agencies, insurers, and broader communities and society. Genetic testing might also reduce delays in diagnoses of autism among African American, Latino and other children. These data, the first to examine several critical aspects of how parents and others view children with autism and other NDDs after receiving genetic diagnoses, highlight vital needs for education of multiple stakeholders (including geneticists, other physicians, genetic counselors, parents, individuals with autism, social service agencies, insurers, policymakers, and the broader public), research (to include perspectives of extended family members, insurers, social service agencies and teachers) and practice (to increase recognition and awareness of the potential benefits and effects of genetic testing for such children). En ligne : https://doi.org/10.1007/s10803-023-06195-0 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=546

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