Thursday, April 23, 2009

The Autism "Science" Foundation

There is a new wanna-be non-profit forming called The Autism Science Foundation whose stated goals are :
  1. Autism is known to have a strong genetic component. Research must aim to discover the mechanisms of action that trigger autism, as well as safe, effective and novel treatments to enhance the quality of life for children and adults currently affected.

  2. Early diagnosis and early intervention are critical to helping people with autism reach their potential, but educational, vocational and support services must be applied across the lifespan. Science has a critical role to play in creating evidence-based, effective lifespan interventions.

  3. Vaccines save lives; they do not cause autism. Numerous studies have failed to show a causal link between vaccines and autism. Vaccine safety research should continue to be conducted by the public health system in order to ensure vaccine safety and maintain confidence in our national vaccine program, but further investment of limited autism research dollars is not warranted at this time.
Sounds good right?  Uhm, maybe not so good.  Lets take a closer look at those goals again - 

1. Autism is known to have a strong genetic component
I think this is a safe enough statement
Research must aim to discover the mechanisms of action that trigger autism,
So autism is a genetic disposition that has some sort of "trigger" that causes it to occur.  So far so good, nothing out of the ordinary.
as well as safe, effective and novel treatments to enhance the quality of life for children and adults currently affected.
This is an interesting phrasing.  You have a condition that has triggers that you are attempting to identify - if you succeed in identifying the triggers then why focus on treatments that "enhance the quality of life", why not focus on preventing the condition from being triggered in the first place?

The use of the words "safe" and "effective" is also an interesting choice.  It almost sounds like they are describing a drug based treatments ... oh uh.
2. Early diagnosis and early intervention are critical to helping people with autism reach their potential
This goal starts off well enough.  Early intervention is thought to be key to helping people with autism overcome their disability.
but 
As my parents were always fond of pointing out when you use the word "but" you are essentially negating what came before.  So early intervention would be key except but...
educational, vocational and support services must be applied across the lifespan. 
Ah, early intervention is important but services must be there for the entire life.  Or in other words, we are going to focus on treatments for adults on the spectrum.  Sounds like a good idea, there are going to be a huge number of adults on the spectrum in the coming decades and there need to be services to help them since it is likely that the majority will not be able to live independently.
Science has a critical role to play in creating evidence-based, effective lifespan interventions.
I have never heard of scientific, evidence-based educational, vocational, or support services.  Do you think they are going to conduct studies to "prove" which vocational trades are most suited for people with autism?  Or do you think they are talking about developing drugs again?  I'm thinking drugs.
3. Vaccines save lives; they do not cause autism.
Yikes - a "science" foundation making a unequivocal statement of fact. They are in essence saying that all possible avenues of thought have been explored and Science has decreed that there is no possible relationship and that vaccines cannot, under any circumstances cause autism.  I have to wonder how they know this.
 Numerous studies have failed to show a causal link between vaccines and autism. 
Now I feel much better.  They have numerous studies that failed to show a link.  And, as everyone who has taken the basic science knows, having "numerous failures" to show a link clearly means that the link isn't there.  It couldn't be possible that it was just the wrong question being asked. 
Vaccine safety research should continue to be conducted by the public health system in order to ensure vaccine safety and maintain confidence in our national vaccine program,
So vaccine safety research should continue to be left up to the companies that are developing the vaccines and marketing them in a liability free market place.  No possibility of problems there.
I also have to wonder at including maintaining confidence as a goal of safety research.  I would think that the goal of safety research is to make sure that they are safe not to make people feel better about them
but
There is that word again. 
further investment of limited autism research dollars is not warranted at this time.
Safety research is important but we won't be doing it - which does make a certain amount of sense since they have already decreed that there is no possibility of any sort of relationship.

So, what is the the goal of this new group?  Simple, to help develop drug based treatments for the up and coming adult autism population.  It is a good thing that someone started doing the research to serve this market, after all, with 1 in 150 children being on the spectrum the potential market is going to be huge. 

There is more to this story than just the mission of the organization.  The founders of the group are an interesting lot and, like normal, the reaction on other blogs is fascinating.  But this post is already on the long side, so that will have to wait for later.

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