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

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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.

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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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  1. Louise Whiteley

    Present address: Medical Museion and Novo Nordisk Foundation Center for Basic Metabolic Research, University of Copenhagen, Copenhagen, Denmark

Authors and Affiliations

  1. National Core for Neuroethics, Division of Neurology, Faculty of Medicine, UBC Hospital, University of British Columbia, 2211 Wesbrook Mall, Koerner S124, Vancouver, BC, V6T 2B5, Canada

    Nina C. Di Pietro, Louise Whiteley, Ania Mizgalewicz & Judy Illes

  2. NeuroDevNet Inc, Child and Family Research Institute, University of British Columbia, Vancouver, BC, Canada

    Nina C. Di Pietro, Ania Mizgalewicz & Judy Illes

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  1. Nina C. Di Pietro
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Correspondence to Judy Illes.

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Di Pietro, N.C., Whiteley, L., Mizgalewicz, A. et al. Treatments for Neurodevelopmental Disorders: Evidence, Advocacy, and the Internet. J Autism Dev Disord 43, 122–133 (2013). https://doi.org/10.1007/s10803-012-1551-7

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