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Journal of Autism and Developmental Disorders

05-04-2024 | Original Article

Impact of a Genetic Diagnosis for a Child’s Autism on Parental Perceptions

Auteurs: Julia Wynn, 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

Gepubliceerd in: Journal of Autism and Developmental Disorders

Abstract

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.

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Titel: Impact of a Genetic Diagnosis for a Child’s Autism on Parental Perceptions
Auteurs: Julia Wynn
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
Publicatiedatum: 05-04-2024
Uitgeverij: Springer US
Gepubliceerd in: Journal of Autism and Developmental Disorders
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI: https://doi.org/10.1007/s10803-024-06273-x

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