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


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.


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



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.


  1. Akins, R. S., Angkustsiri, K., & Hansen, R. L. (2010). Complementary and alternative medicine in autism: An evidence-based approach to negotiating safe and efficacious interventions with families. Neurotherapeutics, 7(3), 307–319.PubMedCrossRefGoogle Scholar
  2. Allen, E. S., Burke, J. M., Welch, M. E., & Rieseberg, L. H. (1999). How reliable is science information on the web? Nature, 402, 722.PubMedCrossRefGoogle Scholar
  3. American Academy of Pediatrics. (2001). Counseling families who choose complementary and alternative medicine for their child with chronic illness or disability. Committee on children with disabilities. Pediatrics, 107(3), 598–601.Google Scholar
  4. Angell, M., & Kassirer, J. P. (1998). Alternative medicine—the risks of untested and unregulated remedies. New England Journal of Medicine, 339(12), 839–841.PubMedCrossRefGoogle Scholar
  5. Bernhardt, J. M., & Felter, E. M. (2004). Online pediatric information seeking among mothers of young children: Results from a qualitative study using focus groups. Journal of medical Internet research, 6(1), e7.PubMedCrossRefGoogle Scholar
  6. Bouche, G., & Migeot, V. (2008). Parental use of the Internet to seek health information and primary care utilisation for their child: A cross-sectional study. BMC Public Health, 8, 300.PubMedCrossRefGoogle Scholar
  7. Boyer, C., Provost, M., & Baujard, V. (2002). Highlights of the 8th HON survey of health and medical Internet users. Health on the net foundation. Accessed 28 May, 2011. Available from
  8. Brown, M. J., Willis, T., Omalu, B., & Leiker, R. (2006). Deaths resulting from hypocalcemia after administration of edetate disodium: 2003–2005. Pediatrics, 118(2), e534–e536.PubMedCrossRefGoogle Scholar
  9. Clarke, C. E. (2008). A question of balance: The autism-vaccine controversy in the British and American elite press. Science Communication, 30, 77–107.CrossRefGoogle Scholar
  10. Coiera, E. (1998). Information epidemics, economics, and immunity on the Internet. BMJ, 317, 1469–1470.PubMedCrossRefGoogle Scholar
  11. D’Alessandro, D. M., Kingsley, P., & Johnson-West, J. (2001). The readability of pediatric patient education materials on the world wide web. Archives of Pediatrics and Adolescent Medicine, 155(7), 807–812.PubMedGoogle Scholar
  12. Di Pietro, N. C., Whiteley, L., Illes, J. (2011). Treatments and services for neurodevelopmental disorders on advocacy websites: Information or evaluation? Neuroethics. doi: 10.1007/s12152-011-9102-z.
  13. Doja, A., & Roberts, W. (2006). Immunizations and autism: A review of the literature. Canadian Journal of Neurological Sciences, 33(4), 341–346.PubMedGoogle Scholar
  14. Dutta-Bergman, M. J. (2004). The impact of completeness and web use motivation on the credibility of e-health information. Joint Commission, 54(2), 253–269.Google Scholar
  15. Eysenbach, G., & Köhler, C. (2002). How do consumers search for and appraise health information on the world wide web? BMJ, 324, 573–577.PubMedCrossRefGoogle Scholar
  16. Eysenbach, G., Powell, J., Kuss, O., & Sa, E. R. (2002). Empirical studies assessing the quality of health information for consumers on the world wide web: A systematic review. JAMA, 287(20), 2691–2700.PubMedCrossRefGoogle Scholar
  17. Gilbert, G. (1977). Referencing as persuasion. Social Studies of Science, 7(3), 113–122.CrossRefGoogle Scholar
  18. Goldman, R. D., & Macpherson, A. (2006). Internet health information use and e-mail access by parents attending a paediatric emergency department. Journal of Emergency Medicine, 23, 345–348.CrossRefGoogle Scholar
  19. Golnik, A. E., & Ireland, M. (2009). Complementary alternative medicine for children with autism: A physician survey. Journal of Autism and Developmental Disorders, 39(7), 996–1005.PubMedCrossRefGoogle Scholar
  20. Hanson, E., Kalish, L. A., Bunce, E., Curtis, C., McDaniel, S., Ware, J., et al. (2007). Use of complementary and alternative medicine among children diagnosed with autism spectrum disorder. Journal of Autism and Developmental Disorders, 37(4), 628–636.PubMedCrossRefGoogle Scholar
  21. Hess, D. (2007). Alternative pathways in science and industry: Activism, innovation and the environment in an era of globalization. Cambridge, MA: The MIT Press.Google Scholar
  22. Hsieh, H. F., & Shannon, S. E. (2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15(9), 1277–1288.PubMedCrossRefGoogle Scholar
  23. Impicciatore, P., Pandolfini, C., Casella, N., & Bonati, M. (1997). Reliability of health information for the public on the world wide web: A systematic survey of advice on managing fever in children at home. BMJ, 314, 1875–1879.PubMedCrossRefGoogle Scholar
  24. Jenssen, B. P., Klein, J. D., Salazar, L. F., Daluga, N. A., & DiClemente, R. J. (2009). Exposure to tobacco on the Internet: Content analysis of Adolescents’ Internet use. Pediatrics, 124(2), e180.PubMedCrossRefGoogle Scholar
  25. Khoo, K., Bolt, P., Babl, F. E., Jury, S., & Goldman, R. D. (2008). Health information seeking by parents in the Internet age. Journal of Paediatrics and Child Health, 44(7–8), 419–423.PubMedCrossRefGoogle Scholar
  26. Kopelson, K. (2009). Writing patients’ wrongs: The rhetoric and reality of information age medicine. JAC, 29, 1–2.CrossRefGoogle Scholar
  27. Kraemer, J. D., & Gostin, L. O. (2009). Science, politics, and values: The politicization of professional practice guidelines. JAMA, 301(6), 665–667.PubMedCrossRefGoogle Scholar
  28. Krippendorf, K. (1980). Content analysis: An introduction to its methodology. Beverly Hills, CA: Sage Publications.Google Scholar
  29. Kunz, M. B., & Osborne, P. (2010). A preliminary examination of the readability of consumer pharmaceutical web pages. Burns, 5(2009), 33–41.Google Scholar
  30. Levy, S. E., & Hyman, S. L. (2005). Novel treatments for autistic spectrum disorders. Mental Retardation and Developmental Disabilities Research Reviews, 11(2), 131–142.PubMedCrossRefGoogle Scholar
  31. Levy, S. E., & Hyman, S. L. (2008). Complementary and alternative medicine treatments for children with autism spectrum disorders. Child and Adolescent Psychiatric Clinics of North America, 17(4), 803–820.PubMedCrossRefGoogle Scholar
  32. Lewis, T. (2006). Seeking health information on the Internet: Lifestyle choice or bad attack of cyberchondria? Media, Culture and Society, 28(4), 521–539.CrossRefGoogle Scholar
  33. McCaffrey, A. M., Pugh, G. F., & O’Connor, B. B. (2007). Understanding patient preference for integrative medical care: Results from patient focus groups. Journal of General Internal Medicine, 22, 1500–1505.PubMedCrossRefGoogle Scholar
  34. McClung, H. J., Murray, R. D., & Heitlinger, L. A. (1998). The Internet as a source for current patient information. Pediatrics, 101(6), e2.PubMedCrossRefGoogle Scholar
  35. McClure, G. (1987). Readability formulas: Useful or useless (an interview with J. Peter Kincaid.). IEEE Transact Profession Commission, 30, 12–15.Google Scholar
  36. Mitka, M. (2008). Chelation therapy trials halted. JAMA, 300(19), 2236.PubMedCrossRefGoogle Scholar
  37. Mooney, C. (2004). Blinded by science: How ‘balanced’ coverage lets the scientific fringe hijack reality. Columbia Journalism Review, 43(4), 26–35.Google Scholar
  38. Nettleton, S., Burrows, R., & O’Malley, L. (2005). The mundane realities of the everyday lay use of the Internet for health, and their consequences for media convergence. Sociology of Health and Illness, 27(7), 972–992.PubMedCrossRefGoogle Scholar
  39. Ostry, A., Young, M. L., & Hughes, M. (2007). The quality of nutritional information available on popular websites: A content analysis. Health Education Research, 23, 648–655.PubMedCrossRefGoogle Scholar
  40. Pandolfini, C., Impicciatore, P., & Bonati, M. (2000). Parents on the web: Risks for quality management of cough in children. Pediatrics, 105, e1.PubMedCrossRefGoogle Scholar
  41. Pereira, J., & Bruera, E. (1998). The Internet as a resource for palliative care and hospice: A review and proposals. Journal of Pain and Symptom Management, 16(1), 59–68.PubMedCrossRefGoogle Scholar
  42. Perez, V. W. (2010). The rhetoric of science and statistics in claims of an autism epidemic. In A. Mukherjea (Ed.), Understanding Emerging Epidemics: Social and Political Approaches (Advances in Medical Sociology, Volume 11). Bradford: Emerald Group Publishing Limited.Google Scholar
  43. Petch, T. (2004). Content analysis of selected health information websites: Final report. Vancouver: Simon Fraser University.Google Scholar
  44. Rossignol, D. A. (2009). Novel and emerging treatments for autism spectrum disorders: A systematic review. Annals of Clinical Psychiatry, 21(4), 213–236.PubMedGoogle Scholar
  45. Rowland, F. (2002). The peer review process. Learned Publishing, 15, 247–258.CrossRefGoogle Scholar
  46. Scullard, P., Peacock, C., & Davies, P. (2010). Googling children’s health: Reliability of medical advice on the Internet. Archives of Disease in Childhood, 95, 580–582.PubMedCrossRefGoogle Scholar
  47. Semere, W., Karamanoukian, H. L., Levitt, M., Edwards, T., Murero, M., D’Ancoma, G., et al. (2003). A pediatric surgery study: Parent usage of the Internet for medical information. Journal of Pediatric Surgery, 38(4), 560–564.PubMedCrossRefGoogle Scholar
  48. Shepperd, S., & Charnock, D. (2002). Against Internet exceptionalism. BMJ, 324(7337), 556–557.PubMedCrossRefGoogle Scholar
  49. Silberg, W. M., Lundberg, G. D., & Musacchio, R. A. (1997). Assessing, controlling and assuring the quality of medical information on the Internet. JAMA, 277, 1244–1245.PubMedCrossRefGoogle Scholar
  50. Simpson, N., & Roman, K. (2001). Complementary medicine use in children: Extent and reasons. A population-based study. British Journal of General Practice, 51(472), 914–916.PubMedGoogle Scholar
  51. Smith, D. R., Calacsan, C., Woolard, D., Luck, M., Cremin, J., & Laughlin, N. K. (2000). Succimer and the urinary excretion of essential elements in a primate model of childhood lead exposure. Toxicological Sciences, 54(2), 473–480.PubMedCrossRefGoogle Scholar
  52. Sonnenberg, F. A. (1997). Health information on the Internet: Opportunities and pitfalls. Archives of Internal Medicine, 157(2), 151–152.PubMedCrossRefGoogle Scholar
  53. Starke, M., & Möller, A. (2002). Parents’ needs for knowledge concerning the medical diagnosis of their children. Journal of Child Health Care, 6, 245–257.PubMedCrossRefGoogle Scholar
  54. Starman, J. S., Gettys, F. K., Capo, J. A., Fleischli, J. E., Norton, H. J., & Karunakar, M. A. (2010). Quality and content of Internet-based information for ten common orthopaedic sports medicine diagnoses. Journal of bone and joint surgery, 92, 1612–1618.PubMedCrossRefGoogle Scholar
  55. Stevenson, F. A., Kerr, C., Murray, E., & Nazareth, I. (2007). Information from the Internet and the doctor-patient relationship: The patient perspective–a qualitative study. BMC Family Practice, 8, 47.PubMedCrossRefGoogle Scholar
  56. Stokstad, E. (2008). Stalled trial for autism highlights dilemma of alternative treatments. Science, 321(5887), 326.PubMedCrossRefGoogle Scholar
  57. Suggs, S. L., & McIntyre, C. (2009). Are we there yet? An examination of online tailored health communication. Health Education and Behavior, 36, 278.PubMedCrossRefGoogle Scholar
  58. The National Center for Complementary and Alternative Medicine. (2010). Accessed 25 September 2010. Available from
  59. Tuffrey, C., & Finlay, S. (2002). Use of the Internet by parents of pediatric outpatients. Archives of Disease in Childhood, 87, 534–536.PubMedCrossRefGoogle Scholar
  60. van Woerkum, C. M. J. (2003). The Internet and primary care physicians: Coping with different expectations. American Journal of Clinical Nutrition, 77(4), 1016S–1018S.PubMedGoogle Scholar
  61. Voelker, R. (2010). FDA warning targets OTC chelation products. JAMA, 304(19), 2112.PubMedCrossRefGoogle Scholar
  62. Wainstein, B. K., Sterling-Levis, K., Baker, S. A., Taitz, J., & Brydon, M. (2006). Use of the Internet by parents of paediatric patients. Journal of Paediatric Child Health, 42(9), 528–532.CrossRefGoogle Scholar
  63. White, M., & Dorman, S. M. (2001). Receiving social support online: Implications for health education. Health Education Research, 16(6), 693–707.PubMedCrossRefGoogle Scholar
  64. Wikgren, M. (2001). Health discussions on the Internet: A study of knowledge communication through citations. Science Commission, 23, 305–317.Google Scholar
  65. Wyatt, J. C. (1997). Commentary: Measuring quality and impact of the world wide web. BMJ, 314(7098), 1879–1881.PubMedCrossRefGoogle Scholar
  66. Zaidman-Zait, A., & Jamieson, J. R. (2007). Providing web-based support for families of infants and young children with established disabilities. Infant Young Child, 20, 11–25.CrossRefGoogle Scholar

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

Personalised recommendations