Monday, February 21, 2011

Autism Speaks Changes Course

Autism Speaks has apparently had enough of the vaccine-autism connection.  Starting with a letter to the editor in the New York Times and ending with a post on their blog, Autism Speaks has said that it is time to change the conversation.

As Geraldine Dawson, Chief Science Officer of Autism Speaks, said in the NY Times -
The answer is not to look to the past and look for blame, but rather to look to the future. We need increased research financing directed toward rigorous science that can provide the answers that parents are looking for and deserve. Until this happens, we will continue to wallow in controversy, and people with autism and families will continue to struggle with autism on their own.
In the blog post, Autism Speaks outlines some of their current priorities  -

  • The role of a multiple environmental factors that are potentially contributing to the increase in autism spectrum disorder (ASD) prevalence
  • New insights into the underlying biology of ASD that are leading to novel treatments
  • Ways we can address the medical conditions that impact the everyday lives of people with ASD, and
  • Programs that are being developed to help adolescents with ASD successfully transition to becoming happy and fulfilled adults.

I have to agree (for once) with Autism Speaks.  It is long past time for the vaccine-autism discussion to come to an end.  All of the sides involved have made their points abundantly clear and nobody is going to adjust their position.

The medical establishment has gone all-in on their push for universal vaccinations and has adopted strong arm techniques in an attempt to force parents to adhere to the vaccination schedule.  They mean well, but this approach is going to come back to haunt them.

The other side (the so-called "anti-vaxers") have their problems as well.  Their ranks contain quite a few people who are very, uhm, vocal  and are quick to leap to the attack.  While I can understand and sympathize with where they are coming from, I have to say that they can sometimes be their own worst enemy.

The problem boils down to the lack of solid data showing a link between vaccines and autism.  Sure, there are studies both for and against the theory (mostly against) that purport to either prove or disprove the link.  And then there are the conspiracy theories abound as to why there isn't better data.

But, at the end of the day, none of that matters because we still don't have any real idea what the biology of autism looks like.  It is one thing to say that autism is made up of these sets of behaviors.  It is another to be able to point to the biological causes of the disorder and have some clue as to how it can be corrected.

So I applaud Autism Speaks for trying to shift the conversation from one possible factor to how to deal with autism as a whole.  Lets just hope it works.


  1. Came across this article recently which illuminates some of the problems with the vaccine discussion on both sides

    I agree with you that people who criticize vaccines can be their own worst enemy.

    On the other hand, if research is constrained, and in my opinion it has been, arguing that the research doesn't show a problem doesn't say a whole heck of a lot. Other than that a lot of money has been spent digging the wrong holes.

  2. True, but I don't see any of the remaining questions about vaccines being researched anytime soon.

    So maybe if we instead focus on the vulnerabilities instead of the possible triggers we might get further.

  3. Perhaps they could do the vaccinated vs. non-vaccinated study that the vaccine causes autism camps are clammoring for, I don' know, somehow even if no differences between the two groups were found, it would probably not be the study to end all studies.

    The question is, change the course of the conversation to what. They fund an individual who states that autism is a harmless condition and is not a disease or disorder, but merely a difference, they have a high school dropout on their science advisory board and they give him money for his own personal use when he is a billionaire compared to me and others with autism. They put on a workplace dog and pony show without contributing to the employment of any autistic individuals, and they give money for the films of someone who states that autism is a good thing.

    I wish they would change the discussion to why they do those things, but I won't hold my breath. Whatever they want to discuss or change the discussion to, their credibility is zero in my eyes and no one who cares for the betterment of autistic people or who longs for a cure that they claim they are trying to find, should contribute to this organization or support them in any fashion.

  4. I don't think that a vax vs no-vax study isn't going to do any good until we have a better handle on the different subgroups of autism. As matters stand right now, the differences between vax and no-vax would have to be very pronounced to show up on a general study. If we know that there is a certain vulnerable group, it would be much easier to find the relation.

    As for Autism Speaks in general, I have to agree with you, Jonathan. Having Robison on their scientific advisory board and letting him fund his son's videos is a joke. I don't contribute to AS (for these reasons and others) and I actively suggest that other family members do the same.

    However, at the same time, if any one organization has the clout to change the course of the public autism discussion and push it into more productive areas, it would be AS. So I have to give them at least a little credit for trying.

  5. I keep seeing the claim that there haven't been vaccinated vs unvaccinated studies re rates of autism, but here are five, that show no connection between autism and vaccines. Why do these not count? That's a genuine question by the way - am I missing something about the claim of lack of studies, that make these five irrelevant?

  6. Hi Autism and Oughtisms -

    keep seeing the claim that there haven't been vaccinated vs unvaccinated studies re rates of autism, but here are five, that show no connection between autism and vaccines. Why do these not count? That's a genuine question by the way - am I missing something about the claim of lack of studies, that make these five irrelevant?

    It depends on if you have read the studies or not, I suppose. Or looked at the abstracts. -- this is a study about how much thimerosal infants got. There is a difference between studying thimerosal and vaccines, just like there is a difference between studying tar free cigarettes and studying smoking. -- This is the study about one vaccine; currently infants get a lot more than that. By the time children get the MMR, they've had three sets of well visits with four to five vaccines per visit. Considering there is signficant differences developmentally between a two month old, and a year old child, studying the MMR isn't the same as studying HIB/DTAP/Hep-B/Polio/Pneumococcal and influenza. -- Another study on the MMR. -- a study on thimerosal -- an MMR study.

    There is a persistent, and mystifying pattern of otherwise intelligent people unable or unwilling to decouple studying one event (the MMR) from a series of events (the vaccine schedule), or one component of an agent, with the entire agent. I do not, for the life of me why in this one particular instance the foundational principles of the scientific method don't matter.

    You only learn about what you study; none of the papers you referenced analyze vaccination. This is why they are not relevant.

    - pD

  7. I do appreciate you clarifying that pD. I found the list on a comment on another blog, the commenter used them to deny the link between vaccines and autism. Considering that the dominant claim about a link between vaccines and autism, has been a focus on MMR and thimerosal for a very long time, I can see why they cited those.

    I would add that they aren't irrelevant to the question of a link between autism and vaccines, that's over-stating your point. It's just that they appear to be more directed at two of the commonest specific claims about the link - MMR and thimerosal. It is important to figure out what aspect of vaccinations is at the core of the claim, studies like these help figure out avenues for investigation.

  8. In my opinion, one of the biggest problems with research is separating out what the researchers said that they did from what their data actually shows.

    Studies are good at answering very specific questions assuming that all of the baked in assumptions are true and that the data actually represents what it is supposed to.

    They are very bad at providing general knowledge that is going to apply in every circumstance.

    And you really have to watch the data. For example this one -

    that talks about thimerosal and how removing it didn't decrease the rate of autism didn't actually measure thimerosal exposure. Rather the researchers took the date that children "should" have no longer had exposure based on local vaccination policies and ran with it (totally ignoring that the area has a high immigration rate).

    That fact doesn't totally invalidate the result, but it does mean that it doesn't tell us too much about whether actual thimerosal exposure is related to autism. And it certainly doesn't tell us anything about vaccines in general.

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