CAVEAT EMPTOR: Some Red Flags for Parents

Many treatment providers lead parents to believe that, not only is there a cure for autism, but that such a cure is attainable for their child. These providers make statements such as…

“This will cure your child”                                      

“I have been using this method for over 20 years. I know it works”                   

“Results are guaranteed to work”                                   

“There is a lot of research. It is just not published yet”                           

“Trust me ……”

Sadly, there is not a shared respect among these providers for data-based research published in peer reviewed journals. Many treatment providers in the autism community are seemingly unaware of the research that has been published, actively discount available research, and refuse to collect data that would enable them to objectively assess response to the treatments they are providing. Equally sad, is that autism treatment has become a multi-million dollar industry where profit generation often supersedes scientific integrity. Many treatment providers charge exorbitant fees and have no trouble finding parents who are willing to re-mortgage their homes in a desperate effort to help their child.  The media often exacerbates these problems by spotlighting interventions that lack a sound research foundation.

It cannot be overstated that the current landscape of treatment options for parents of children with autism can be a confusing and unsettling one. There are well over 100 interventions for autism.  Fortunately, parents can turn to some of the articles and books listed below to better understand how to separate effective treatments for those that may actually waste precious resources.

Nonetheless, professionals should assume the lion’s share of the responsibility when discussing treatments with consumer groups. The Autism Task Force of MADSEC recommends that professionals endorsing a specific intervention have the ethical responsibility to:

–    Accurately describe research (or lack thereof)

–    Refrain from exaggerated claims of effectiveness

–    Portray method as “experimental” and disclose this to key decision makers

Similarly, the American Academy of Pediatrics has recognized that controversial, nontraditional therapies for autism will continue to proliferate, and that since parents will likely seek input from pediatricians, pediatricians must be prepared to discuss autism treatment directly and carefully. More specifically, pediatricians were advised to:

–    Promote access to proven methodologies

–    Be involved in all treatment decisions even when faced with disagreements

–    Discuss alternative therapies initially and frequently and remain current on these treatments

–    Clarify that discussion of these alternative therapies should not be misconstrued as endorsement

–    Discussing the placebo effect and the importance of solid research

–    As needed, set up a trial of therapy with clear treatment objectives and adequate data collection to assess benefit