Wednesday, September 08, 2010
1 East 33rd Street
New York, NY 10016
We appreciate the broad range of supports that your organization offers persons with autism and their families, including the opportunity for the community to post questions for your science team on your website. However, we wish to write an open letter to share our concerns regarding your response to a question posted on this website regarding vaccines. As of September 1, 2010, this question and corresponding response can be found at: http://action.autismspeaks.org/page/content/scienceanswers.
Specifically, our concerns include the following:
Your science team wrote: "Several epidemiological studies have explored whether either the MMR vaccine or thimerosol, a preservative previously used in vaccines, are linked to autism, and these studies have not supported a link."
Our response: We would suggest a rewording to make this clearer for those persons without a science background. The epidemiological studies have found no link. By stating that "these studies have not supported a link" you introduce a level of ambiguity that is potentially misleading. A reader may erroneously infer that there is a link that studies just have not found yet. Given the inordinate amount of media attention directed to this topic, we recommend that you avoid contributing to continued confusion on this matter with "soft" statements.
Your science team wrote: "However, these studies were not designed to identify effects in a small population of potentially vulnerable children due to rare genetic and/or medical conditions."
Our response: Are there data indicating that these "small populations" exist? If the answer is "no" we recommend that you state this clearly and consider removing any mention of this at all. As written, your response suggests that there is a credible scientific rationale for a "vulnerable population" hypothesis. For your constituents, the implication is that there is a group of children for whom vaccines may be extremely dangerous. Moreover, because no criteria are offered by which a parent can determine whether his/her child is in this supposed "vulnerable population" it is likely that some will assume their child is in the risk group, and may then choose not to vaccinate.
Your science team wrote: We are seeking to understand if vulnerable populations exist, and if so, how we identify them early so they can be protected from public health threats in the safest manner possible.
Our response: Exploratory science is very important. Without it, progress would be minimal. However, in this instance, by noting that Autism Speaks is "seeking to understand if vulnerable populations exist" you suggest a level of concern that may not be justified with the scant data available. Again, we recommend qualifying this response by pointing out that no data yet exist that support a "vulnerable population" hypothesis and that it is entirely theoretical. Furthermore, as this particular statement is phrased, one might inadvertently believe that immunizations are a possible "public health threat" when in fact, creating unsubstantiated fear in parents that could lead to parents not vaccinating is what will create a public health threat. If enough parents withhold vaccination, awful, horrible diseases that are currently only distant memories are likely to return and become part of our daily lives.
Finally, your brief reply links with an interview with Dr. Dawson who states, "We believe that the best way to increase parents’ trust in the vaccine program is not to dismiss their concerns, but rather to respectfully listen to their concerns and conduct rigorous research building on the best currently available science relevant to these concerns."
Of course, we agree with Dr. Dawson in that parents' concerns should not be dismissed. However, this principle can be achieved while simultaneously presenting the state of the science plainly and without undue qualification. Indeed, it is an essential ingredient in the maintenance of this respectful dialogue between the scientific community and families.
Thank you for your consideration of these points and thank you for all you do to support individuals with autism and their families.
Association for Science in Autism Treatment
Autism Science Foundation
Read More at http://action.autismspeaks.org/.../scienceanswers