Original Research

Journal of Genetic Counseling

, Volume 18, Issue 5, pp 507-519

Parents’ Perceptions of Autism Spectrum Disorder Etiology and Recurrence Risk and Effects of their Perceptions on Family Planning: Recommendations for Genetic Counselors

  • Christina G. SelkirkAffiliated withThe Center for Medical Genetics, NorthShore University HealthSystem Email author 
  • , Patricia McCarthy VeachAffiliated withDepartment of Educational Psychology, University of Minnesota
  • , Fengqin LianAffiliated withDepartment of Educational Psychology, University of Minnesota
  • , Lisa SchimmentiAffiliated withDepartment of Pediatrics, University of Minnesota
  • , Bonnie S. LeRoyAffiliated withDepartment of Genetics Cell Biology, and Development, Institute of Human Genetics, University of Minnesota

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Abstract

Knowledge about the etiology of Autism Spectrum Disorders (ASDs) is increasing, but causes remain elusive for most cases. Genetic counselors are positioned to help families that have children with ASDs despite uncertainty regarding etiology. To determine how genetic counselors might best provide services, an anonymous survey was conducted with 255 parents whose children were diagnosed on the autism spectrum. Questions concerned: 1) their perceptions of ASD cause(s) and 2) recurrence risk, 3) whether perceived risk affected family planning decisions, 4) whether parents had received genetic services, and 5) how genetic counselors might assist families. The most prevalent perceived cause was genetic influences (72.6%). Most parents’ recurrence risk perceptions were inaccurately high and significantly affected family planning. Only 10% had seen a genetic professional related to an ASD. Parents provided several suggestions for genetic counselor best practices. Findings indicate the importance of genetic counselor awareness of parent perceptions in order to best help families who have children with ASDs.

Keywords

Autism spectrum disorders Parent risk perceptions Etiology Recurrence risk Family planning decisions Genetic counseling practice