Thursday, August 18, 2011

The Curious Autism Science Foundation

It has been two years since Alison Tepper Singer absconded with Autism Speak's seat on the IACC and co-founded the Autism Science Foundation.  The ASF is, of course, a (cough) leading nonprofit dedicated to finding answers to the puzzle of autism.

Or at least they are dedicated to finding all of the answers possible when starting from the assumption that vaccines, anything related to vaccines, and GI issues have nothing to do with autism.

It has been a little bit of a rocky start for the ASF.

On day one, the ASF climbed into bed with prominent members of the neurodiversity and adult "don't speak ill of" autism community.  I'm guessing they felt the need to do that because they annoyed one large part of the autism community by running away with Autism Speak's seat on the IACC and another large part with their absolute "asked and answered" stance on autism "science".

The ND and adult "self-advocate" groups might have been the only vocal group left who would give them the time of day.  But I have to wonder what sort of pact with the devil was required to seal this deal because Ms Singer was definitely not well liked by these people.  Prior to the formation of the foundation, these people were all but burning her in effigy over comments she made years earlier about autism making her want to drive off a bridge.

But whatever promises were made, the ASF gained the acceptance of a large part of the ND and self-advocate movements.  Which is a rather peculiar pairing when you think about it.  On the one side, you have a foundation dedicating to following science and on the other a group of people who don't seem to think that autism is a disorder or that it needs to be treated/cured.  On the one side you have a foundation dedicated to finding the genetic "causes" of autism and on the other people who object to almost any genetic research into autism.

I think you get the point, the two groups certainly make strange bed fellows.

And so, with their bed made, the ASF turned to more mundane matters such as where to hang their hats.  And speaking of location, the initial location was none other than the basement of Ms. Singer's home.  Which, all things considered, isn't the worst place to start from.  I just have to wonder how many of the other non-profit public members of the IACC worked out of someone's basement.

So, with their bed made and located in Ms. Singer's basement, the foundation turned to creating its website to share its mission and to provide accurate scientific information about autism to the world.

And promptly got it wrong.

On their website, they included information about PDD-NOS, aka Pervasive Developmental Delay - Not Otherwise Specified.  They also wanted to remind us that "autism is pervasive developmental delay, which means children will continue to develop, learn, gain skills and adapt as they age".

Which while it might be true that some children with autism will continue to grow and learn on their own, you can't really say that for all children.  And last time I checked, the "scientific" definition of autism is that it is a development disorder, not a "delay", and PDD-NOS stands for Pervasive Developmental Disorder - Not Otherwise Specified, again not a "delay".

I find it highly curious that an organization with the word "science" in their name and a gaggle of scientific advisers would get the name and basic concept of the disorder they are targeting wrong.  Maybe it had something to do with getting into bed with the ND movement?

The foundation also has some questionable information about the gluten-free, casein-free diet on site, saying that "children on the GFCF diet have been found to have lower bone density than controls, which could lead to osteoporosis."

There has been no study (that I am aware of) that has provided strong evidence that children with autism on the GFCF diet are more likely that children with autism who aren't on the diet to have lower bone density.  Or for that matter any study whatsoever that attempts to sort out whether the GFCF diet could cause lower bone density or whether lower bone density could be caused by another condition (such as malabsorption) that the GFCF diet is used to treat.

The best (and worst) you can say about the GFCF diet is that the available evidence is inconclusive.  There is some evidence that suggests it can help some children with autism but there certainly isn't any evidence that suggests that it would help all children or that it could magically cure every person with autism.

But moving along, with the ASF firmly in bed with the advocates in Ms. Singer's basement and their version of science nestled in its crib, the foundation secured funding in the form of proceeds from Dr. Offit's autism book  started operations.

Or something like that, my memory of the exact sequence and timing of events is a little bit blurry.  It is about this time that I finally found something better to do with my time and stopped paying attention to what the ASF was doing.

Fast forward to the present day and most of the original rough start has been erased.

Autism Speaks managed to get another seat on the IACC so that one of the largest private sources of funding for autism research could once again participate in the discussion of the future of autism research.

The ASF appears to have moved out of the basement and into New York City.

Unfortunately, the ASF is still calling autism a developmental delay instead of a disorder and they haven't updated their web site to reflect the data from the most recent twin studies or sibling study.  And the GFCF diet still can lead to osteoporosis.

At least they got the science part, oh wait.  Two out of three isn't bad, right?

Moving right along...

As I think back over the past two years, I can't really put my finger on anything major the ASF has done.  Perhaps it was because I wasn't paying attention but you would think that anything of any major importance would have appeared in the headlines.

I do seem to remember something about them occasionally passing out sandwiches to scientists, possibly to help them think better (it is hard to think on an empty stomach).  I also seem to remember something about them paying for ND bloggers, such as Sullivan and DoC, to attend autism conferences and write about it on their blogs.

Oh, and I think they did fund some research too.

A few months ago, I noticed that the ASF announced the imminent arrival of the first annual report.  Since I hadn't really been following the what the foundation was up to, I thought it would be interesting to see what exactly the ASF had done in the first two years.

For their part, the ASF appeared to be very excited to release their first annual report, calling it "doing BIG things" and going so far as to create a special web site to release the report.  This special site provided little snippets of information from the report and promised that the full report will would available in June.

But then June came and went and the report was not published.  And then July passed and still no report.  Here it is, the middle of August and the special site is still claiming that the report is going to be published in June.  Maybe they mean June 2012?

I know the ASF wants to be taken seriously but I have to wonder.  I can't imagine Autism Speaks or any other large autism non-profit making a big to-do about releasing its annual report and then simply failing to do so.  The ASF says that it survives on donations but who would be willing to donate to an organization that won't even tell you how it uses the money you give it?

Very curious.


  1. HI MJ -

    The bone density study is:

    Reduced bone cortical thickness in boys with autism or autism spectrum disorder

    Basically it found reduced bone density in the whole autism group, and some more in the caesin free diet group. The funny part is that so many of the people who used this study to beat up on the diet didn't see the bigger message that the whole group had lower bone density.

    - pD

  2. And they didn't adjust for calcium supplement usage or the fact that the autism group was above the average BMI either.

  3. I know this comment is slightly off-topic from the original post but bear with me.
    The Hediger paper is a paper whose findings need to be taken into consideration when implementing a casein-free diet and in particular the value of proper dietetic support when adopting any dietary intervention.
    At the same time, even the authors accept that their results take no account of any underlying GI problems potentially affecting absorption of things like calcium and vitamin D; also that bone thickness is not the same as bone mineral content or bone mineral density (whose measurement are more invasive).
    I would like to see some follow-up to this original study and also whether or not it ties into things like joint hypermobility or other connective tissue conditions which seems to be tied into at least some cases of autism.

  4. Just wanted to mention that Every Child by Two has decided that the ASF is the only autism group for them to partner with. As far as I can sort it out, it is because they wanted "we adore vaccines" to be a core value of the autism group and ASF seems to be the one and only who meets that stringent standard.

    Working together they can spread even more misinformation!