We've lost that lovin' feeling...
15/09/11 18:35
As we all know, parents of children with autism are bombarded daily with offers to cure their children with the latest treatments.
There have been several books written on the plethora of treatment options parents must evaluate. Recently the ethicists have joined the conversation. A new article, Treatments and Services for Neurodevelopmental Disorders on Advocacy Websites: Information or Evaluation?, addresses this very topic. These researchers analyze major advocacy websites and confirm what many parents of children with autism already know: “Treatment information is primarily targeted at families and is overwhelmingly encouraging, regardless of the type or conventionality of treatments” (p.1). No disagreement there. Seemingly every month a new unsubstantiated treatment for autism is introduced. It’s the Wild West.
Then things go off the rails. They say, “We conclude with recommendations for new partnerships between government-funded health organizations, advocacy and investigators to make more transparent the role of online information in informing treatment options and improving the evaluation of information.” Ouch! Are they nuts? This conclusion is hugely problematic. They seem to understand the problem posed by the overload of Internet information, but they badly fumble the solution.
These ethicists do not understand that parents have utterly lost faith in the very group that the ethicists are recommending to provide evidenced-based standards for autism treatment! The only way to get back the trust of parents of children with autism, particularly when it comes to autism treatment, is to make sure that government-funded health policy researchers stay the hell away!!! The ethicists may have no idea that over a decade ago, health policy researchers funded by the same organization that funds these ethicists’ study (the British Columbia Office of Health Technology Assessment and it’s sister organization the Canadian Institutes of Health Research) were caught with their pants down in court presenting “Junk Science” to a Supreme Court judge, presented during the Auton case. The judge ruled (paragraph 48) that government funded autism research is “...obviously biased” ... “that detracts significantly from its usefulness!” Science for Sale in the Autism Wars, presents detailed evidence regarding the hatchet job they did on intensive behavioral treatment. This should forever ban Canadian health technology (and anyone funded or affiliated with same) from the realm of credible research and academic inquiry where autism is concerned.
If these researchers want to clean up the Internet, they desperately need to clean up their own house first!
There have been several books written on the plethora of treatment options parents must evaluate. Recently the ethicists have joined the conversation. A new article, Treatments and Services for Neurodevelopmental Disorders on Advocacy Websites: Information or Evaluation?, addresses this very topic. These researchers analyze major advocacy websites and confirm what many parents of children with autism already know: “Treatment information is primarily targeted at families and is overwhelmingly encouraging, regardless of the type or conventionality of treatments” (p.1). No disagreement there. Seemingly every month a new unsubstantiated treatment for autism is introduced. It’s the Wild West.
Then things go off the rails. They say, “We conclude with recommendations for new partnerships between government-funded health organizations, advocacy and investigators to make more transparent the role of online information in informing treatment options and improving the evaluation of information.” Ouch! Are they nuts? This conclusion is hugely problematic. They seem to understand the problem posed by the overload of Internet information, but they badly fumble the solution.
These ethicists do not understand that parents have utterly lost faith in the very group that the ethicists are recommending to provide evidenced-based standards for autism treatment! The only way to get back the trust of parents of children with autism, particularly when it comes to autism treatment, is to make sure that government-funded health policy researchers stay the hell away!!! The ethicists may have no idea that over a decade ago, health policy researchers funded by the same organization that funds these ethicists’ study (the British Columbia Office of Health Technology Assessment and it’s sister organization the Canadian Institutes of Health Research) were caught with their pants down in court presenting “Junk Science” to a Supreme Court judge, presented during the Auton case. The judge ruled (paragraph 48) that government funded autism research is “...obviously biased” ... “that detracts significantly from its usefulness!” Science for Sale in the Autism Wars, presents detailed evidence regarding the hatchet job they did on intensive behavioral treatment. This should forever ban Canadian health technology (and anyone funded or affiliated with same) from the realm of credible research and academic inquiry where autism is concerned.
If these researchers want to clean up the Internet, they desperately need to clean up their own house first!