Journal of Genetic Counseling

, Volume 21, Issue 6, pp 803–813 | Cite as

Underutilization of Genetics Services for Autism: The Importance of Parental Awareness and Provider Recommendation

  • Kimberly Vande Wydeven
  • Andrea Kwan
  • Antonio Y. Hardan
  • Jonathan A. Bernstein
Original Research

Abstract

Reasons for the underutilization of genetics services by families of children with autism spectrum disorders (ASD) are not well understood. We report the identification of factors associated with this underuse. Survey-based study of parents and/or guardians of children with ASD. One hundred fifty-five families completed the questionnaire. Thirty-one of 155 (20%) children had seen a genetics professional. Forty-nine of 154 (32%) children had undergone genetic testing. Parents whose child saw a genetics professional were more likely to 1) Have a primary provider refer for or suggest a genetics evaluation 2) Have asked for a referral, and/or 3) Know another person with a genetic cause of ASD. amilies of children with ASD who have not received genetics services are less aware of their availability and utility. They are also less likely to have their provider recommend a clinical genetics evaluation. Efforts should be taken to increase awareness of both health providers and parents regarding the usefulness of genetics services for ASD.

Keywords

Autism spectrum disorders Genetics services Utilization Access to care Genetic testing 

Supplementary material

10897_2012_9494_MOESM1_ESM.pdf (153 kb)
Table SIFactors Influencing Utilization of Genetics Services for Autism Spectrum Disorders. (PDF 153 kb)
10897_2012_9494_MOESM2_ESM.pdf (102 kb)
FigS1Influences on Use of Genetics Services for Families of Children with Autism Spectrum Disorders. (PDF 102 kb)
10897_2012_9494_MOESM3_ESM.pdf (270 kb)
FigS2Utilization of Genetic Testing. (PDF 269 kb)
10897_2012_9494_MOESM4_ESM.pdf (147 kb)
FigS3Referral and Primary Provider Role. (PDF 147 kb)
10897_2012_9494_MOESM5_ESM.pdf (119 kb)
FigS4Parental Awareness. (PDF 118 kb)

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Copyright information

© National Society of Genetic Counselors, Inc. 2012

Authors and Affiliations

  • Kimberly Vande Wydeven
    • 1
  • Andrea Kwan
    • 1
    • 2
  • Antonio Y. Hardan
    • 3
  • Jonathan A. Bernstein
    • 2
  1. 1.Department of GeneticsStanford UniversityStanfordUSA
  2. 2.Department of Pediatrics, Division of Medical GeneticsStanford UniversityStanfordUSA
  3. 3.Department of Psychiatry and Behavioral ScienceStanford UniversityStanfordUSA

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