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.
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.
- Content Type Journal Article
- Category Original Paper
- Pages 1-12
- DOI 10.1007/s10803-012-1551-7
- Authors
- Nina C. Di Pietro, 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
- Louise Whiteley, 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
- Ania Mizgalewicz, 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
- Judy Illes, 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
- Journal Journal of Autism and Developmental Disorders
- Online ISSN 1573-3432
- Print ISSN 0162-3257