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21-09-2019 | Original Paper

Genetic Testing Experiences Among Parents of Children with Autism Spectrum Disorder in the United States

Tijdschrift:
Journal of Autism and Developmental Disorders
Auteurs:
Shixi Zhao, Wei-Ju Chen, Shweta U. Dhar, Tanya N. Eble, Oi-Man Kwok, Lei-Shih Chen
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Electronic supplementary material

The online version of this article (https://​doi.​org/​10.​1007/​s10803-019-04200-z) contains supplementary material, which is available to authorized users.

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Abstract

This study examined the experiences of Autism Spectrum Disorder (ASD) genetic testing among parents of children with ASD. A nationwide sample of 552 parents of children with ASD completed an online survey. Nearly one-quarter (22.5%) of the parents reported that their affected children had undergone ASD genetic testing. The testing utilization was associated with awareness of ASD genetic testing and whether information was received from healthcare providers. Among parents whose children with ASD were tested, 37.6% had negative experiences, which mainly due to lack of perceived testing benefits to their affected children and unpleasant testing experiences with healthcare providers. To provide better healthcare services, it is critical to ensure parents understand the purposes, benefits, and results of ASD genetic testing.

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Supplementary material 1 (DOCX 21 kb)
10803_2019_4200_MOESM1_ESM.docx
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