Impact of a Genetic Diagnosis for a Child's Autism on Parental Perceptions.
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 a...
| Publicado en: | Journal of Autism & Developmental Disorders Vol. 55; no. 5; pp. 1809 - 1824 |
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| Autores principales: | , , , , , , , , , , , |
| Formato: | research tables/charts Journal Article |
| Publicado: |
Springer Nature
May2025
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=184706131&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 184706131 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 01623257 AUT jtl: Journal of Autism & Developmental Disorders issn: 01623257 maglogo: N pubinfo: dt: May2025 vid: 55 iid: 5 pid: 237 pub: Springer Nature place: New York, New York artinfo: ui: 184706131 176428241 184706131 184706131 10.1007/s10803-024-06273-x 184706131 ppf: 1809 ppct: 15 formats: fmt: @attributes: type: P tig: atl: Impact of a Genetic Diagnosis for a Child's Autism on Parental Perceptions. aug: au: Wynn, Julia Karlsen, Anna Huber, Benjamin Levine, Alina Salem, Amanie White, L. Casey Luby, Marti Bezborodko, Ekaterina Xiao, Sabrina Chung, Wendy K. Klitzman, Robert L. Appelbaum, Paul S. affil: https://ror.org/01esghr10 Department of Pediatrics, Columbia University Irving Medical Center, New York, NY, USA sug: subj: Autism Spectrum Disorder Diagnosis Autism Spectrum Disorder Familial and Genetic Autism Spectrum Disorder Psychosocial Factors Genetic Screening Parent-Child Relations Human Male Female Child, Preschool Child Adult Surveys Semi-Structured Interview Descriptive Statistics Sequence Analysis Multimethod Studies P-Value Comparative Studies Funding Source Child, Preschool: 2-5 years Child: 6-12 years Adult: 19-44 years Male Female ab: 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. pubtype: Academic Journal doctype: research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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