title: Parental interest in a genetic risk assessment test for autism spectrum disorders.
abstract: To better understand parental opinions regarding the diagnostic process and use of genetic testing to assess risk for autism spectrum disorders (ASDs) in the younger siblings of affected children in the Unites States, we conducted a survey of parents who had at least one child with ASD. A total of 162 surveys were completed anonymously using an Internet-based survey tool. The mean reported time to ASD diagnosis and age at diagnosis were 35.2 months and 56.6 months, respectively. Seventy-two percent of parents felt there was a delay in diagnosis. Most parents indicated they would want to pursue genetic testing if a test were available that could identify risk in a younger sibling (80%). Earlier evaluation/intervention, closer monitoring, and lessened anxiety were reasons cited for testing. Our survey indicates most parents would pursue genetic risk assessment testing in children at high risk for ASD.
authors.affiliation: Arcadia University, Glenside, PA, USA.
authors.forename: Vivien
authors.initials: V
authors.lastname: Narcisa
authors.forename: Marie
authors.initials: M
authors.lastname: Discenza
authors.forename: Erica
authors.initials: E
authors.lastname: Vaccari
authors.forename: Beth
authors.initials: B
authors.lastname: Rosen-Sheidley
authors.forename: Antonio Y
authors.initials: AY
authors.lastname: Hardan
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Couchon
mesh_terms: D000328:Adult; D002659:Child Development Disorders, Pervasive / Q000175:diagnosis* / Q000235:genetics; D002675:Child, Preschool; D003625:Data Collection; D057210:Delayed Diagnosis; D061345:Early Medical Intervention; D005260:Female; D005820:Genetic Testing; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D008875:Middle Aged; D010290:Parents; D018570:Risk Assessment; D035781:Siblings; D014481:United States