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

  • Original Research
  • Published:
Journal of Genetic Counseling

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.

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Acknowledgements

Subjects were recruited with the assistance of the Autism and Developmental Disabilities Clinic at Stanford University and the Interactive Autism Network (IAN) Project at the Kennedy Krieger Institute, Baltimore, Maryland. We also wish to acknowledge Raymond R. Balise and Catherine Ley at Stanford University for assistance in statistical analysis methods. Lastly, we wish to thank the survey respondents for their participation in this research. This work was supported by funding through the MS Program in Human Genetics and Genetic Counseling at Stanford University.

Disclosure of interest

The authors have no conflicts of interest or disclosures to declare in relation to this manuscript. The authors have full control of all primary data and agree to allow the journal to review this data if requested.

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Authors and Affiliations

  1. Department of Genetics, Stanford University, Stanford, CA, USA

    Kimberly Vande Wydeven & Andrea Kwan

  2. Department of Pediatrics, Division of Medical Genetics, Stanford University, 300 Pasteur Dr. H-315, Stanford, CA, 94305, USA

    Andrea Kwan & Jonathan A. Bernstein

  3. Department of Psychiatry and Behavioral Science, Stanford University, Stanford, CA, USA

    Antonio Y. Hardan

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  1. Kimberly Vande Wydeven
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  2. Andrea Kwan
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  3. Antonio Y. Hardan
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  4. Jonathan A. Bernstein
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Correspondence to Jonathan A. Bernstein.

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Table SI

Factors Influencing Utilization of Genetics Services for Autism Spectrum Disorders. (PDF 153 kb)

FigS1

Influences on Use of Genetics Services for Families of Children with Autism Spectrum Disorders. (PDF 102 kb)

FigS2

Utilization of Genetic Testing. (PDF 269 kb)

FigS3

Referral and Primary Provider Role. (PDF 147 kb)

FigS4

Parental Awareness. (PDF 118 kb)

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Vande Wydeven, K., Kwan, A., Hardan, A.Y. et al. Underutilization of Genetics Services for Autism: The Importance of Parental Awareness and Provider Recommendation. J Genet Counsel 21, 803–813 (2012). https://doi.org/10.1007/s10897-012-9494-x

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  • DOI: https://doi.org/10.1007/s10897-012-9494-x

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