Feedback from Parents
In order to understand parental experiences with the ASD diagnostic process, perceptions on the risk of ASD for younger siblings, and opinions regarding genetic testing for ASD, IntegraGen conducted an Internet-based survey of parents with at least one child with ASD.
Click here to view the publication in Clinical Pediatrics reporting the results from the parental survey.
Click here to download an infographic which reviews the survey results.
Summary of findings:
- 162 parents participated in survey.
- 89.5% had one child with ASD, while 8.6% and 1.9% had 2 or ≥3 children with ASD, respectively.
- 19% percent of respondents indicated there was an undiagnosed sibling under the age of 48 months in the family.
- The average time from a suspected difference in development to ASD diagnosis was 35.2 months.
- The average age of ASD diagnosis was 56.6 months.
- The majority of parents indicated that delay in ASD diagnosis was primarily due to a “wait and see” approach by the child’s pediatrician or a delay in seeing a specialist.
- 80% of parents with a younger undiagnosed sibling indicated they would want their child tested if a genetic test were available that could identify risk for ASD, even if it could not confirm diagnosis.
Delayed diagnosis remains an issue among children with ASD. The results of this survey indicate the majority of parents would be interested in a genetic risk assessment test for autism if their family included a younger sibling of a child diagnosed with ASD.
Narcisa V, et al. Parental interest in a genetic risk assessment test for autism spectrum disorders. Clin Pediatr.2013; 52:139-46.
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