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Journal of Autism and Developmental Disorders

, Volume 43, Issue 1, pp 122–133 | Cite as

Treatments for Neurodevelopmental Disorders: Evidence, Advocacy, and the Internet

  • Nina C. Di Pietro
  • Louise Whiteley
  • Ania Mizgalewicz
  • Judy IllesEmail author
Original Paper

Abstract

The Internet is a major source of health-related information for parents of sick children despite concerns surrounding quality. For neurodevelopmental disorders, the websites of advocacy groups are a largely unexamined source of information. We evaluated treatment information posted on nine highly-trafficked advocacy websites for autism, cerebral palsy, and fetal alcohol spectrum disorder. We found that the majority of claims about treatment safety and efficacy were unsubstantiated. Instead, a range of rhetorical strategies were used to imply scientific support. When peer-reviewed publications were cited, 20 % were incorrect or irrelevant. We call for new partnerships between advocacy and experts in developmental disorders to ensure better accuracy and higher transparency about how treatment information is selected and evidenced on advocacy websites.

Keywords

Autism cerebral palsy Foetal alcohol spectrum disorder Advocacy Internet Treatment information Science communication Ethics Content analysis 

Notes

Acknowledgments

This research was generously supported by NeuroDevNet, Inc. The authors’ work related to this study is also supported by CIHR/INMHA CNE #85117, the Canadian Foundation for Innovation, the British Columbia Knowledge Development Fund (JI, Principal Investigator), and the Wellcome Trust (LW). JI is the Canada Research Chair in Neuroethics.

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Copyright information

© Springer Science+Business Media, LLC 2012

Authors and Affiliations

  • Nina C. Di Pietro
    • 1
    • 2
  • Louise Whiteley
    • 1
    • 3
  • Ania Mizgalewicz
    • 1
    • 2
  • Judy Illes
    • 1
    • 2
    Email author
  1. 1.National Core for Neuroethics, Division of Neurology, Faculty of Medicine, UBC HospitalUniversity of British ColumbiaVancouverCanada
  2. 2.NeuroDevNet Inc, Child and Family Research InstituteUniversity of British ColumbiaVancouverCanada
  3. 3.Medical Museion and Novo Nordisk Foundation Center for Basic Metabolic ResearchUniversity of CopenhagenCopenhagenDenmark

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