Research Day

Caregiver Awareness Of Genetic Testing For Autism Spectrum Disorder

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Genetic etiology testing for Autism Spectrum Disorder (ASD) has been widely recommended by several professional societies for more than a decade. Recent data reveals that these services are severely underutilized, but the reasons for this are not well established. We developed an online survey to explore this deficit by evaluating the rate that caregivers are aware of, offered, and have completed genetic testing for their child with ASD. The survey was disseminated through the Chicago, IL and Milwaukee, WI chapters of Autism Speaks, a national caregiver support group for ASD. 138 caregivers completed the survey, with only 53.6% being aware of genetic testing for ASD. Furthermore, only 30% were offered genetic testing by their provider and merely 17.4% actually completed genetic testing for their child, despite the fact that most would participate in genetic testing if it was available. Insurance denials also prevented some caregivers from completing genetic testing. Overall, this survey reveals barriers to genetic testing for ASD at several levels, beginning largely with a lack of awareness by the caregiver but also involving issues with ASD management and insurance coverage. Recognition of these barriers can inform the development of targeted social and educational programs. In doing so, we may be able to significantly increase the utilization rate of genetic testing in ASD.

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