Sunday, October 2, 2011

The Autism Science Foundation's Makeover Failure

A little over a month ago I pointed out some curiosities about the Autism Science Foundation.  Since that time the foundation has launched a new web site and updated their "2010 Annual Report" web site, so lets see how they did with their update

Complaint #1 : PDD-NOS is Pervasive Developmental Disorder - Not Otherwise Specified

Over two years ago, I pointed out that the ASF's web site was calling PDD-NOS the wrong thing - "Pervasive Developmental Delay - Not Otherwise Specified".  That inaccurate description is still on their new redesigned website.

I can understand the initial version of the site having wrong information but come on.  If one of the goals of the foundation is to "provide information about autism to the general public" and they can't even get the name of the condition correct, how much trust do you think you should place in other things they say?

Complaint #2 : The GFCF Diet

I also pointed out that their information about the GFCF diet was misleading.  They claim that children on the GFCF diet have lower bone densities as if it were a proven fact when, in fact, there is only one small study that showed that children on this diet might have lower bone densities.  And that study was not able to establish cause and effect.  As in the study could not say whether the diet caused the lower density or whether the density problem was caused by the underlying problem that the diet was treating.  Given what I have gone through with my children to get their levels of nutrients up to where they need to be, my money would be on the later.

The ASF also claims that a "large-scale study of the safety and efficacy of the GFCF diet indicated that children on the diet had similar outcomes to those who were not on the diet".  Again, this claim is lacking evidence.  There are some studies of the effectiveness of the diet but most of them would not qualify as "large-scale" and precious few are actually set up in such as way as to test the effectiveness of the diet.

And for that matter, would it really hurt the ASF to include footnotes citing the source of their claims?  Most other places that claim to offer "scientific" based advice do that as a matter of course.

Complaint #3 : The Annual Report

Back in May the ASF announced their first annual report and put up this fancy web site that promised more information in June.  Well, June turned into July and then into August and the ASF still had not make good on that promise.  Finally, during this latest makeover, the ASF got around to updating their anual report web site.

But they didn't provide the information that they promised - they simply took down the references to June 2010.  So if you look under the "Financials" section of the site you will see "Financials Coming Soon!" instead of the something along the lines of Financials Coming in June.

Do you really want to donate to an organization that seems unable to make good on its promises to provide a breakdown of exactly how they use their money?

Complaint #4 : Growing Older Makes It Better

Under their "Treatment Options" section they make some rather questionable claims about the prognosis for children on the spectrum -
Remember, autism is pervasive developmental delay, which means children will continue to develop, learn, gain skills and adapt as they age. Sometimes children lose their diagnosis altogether, leading to claims of recovery. Keep in mind that symptoms of autism change as a child develops.
The unfortunate truth is that not every child on the spectrum will continue to develop and gain skills as they age.  Sometimes getting older will help develop skill but that is far from a given and has not been demonstrated in any sort of scientific study.

This idea touches on what is likely the single hardest thing for parents to accept about autism and what makes autism different from other development disorders.  You have no clue what the outcome for a particular child will be and no way to predict what will actually improve the outcome.  The most frustrating thing is that what works for one child may not work for another - even if that other child is genetically identical.  And there doesn't seem to be any rhyme or reason as to why this is the case.

In other development disorders you have a better idea of what the outcome is going to be from the start and , in some cases, a better set of tools to work with.  With autism the range spans from completely functional with no trace of autism (i.e. recovered) all the way down to completely unable to function in any way.  And no one can tell you if your child is going to be functional or non-functional or what specific treatments or therapies will actually be effective at helping them move along.

The one thing that I can tell you is the worst thing you can do is sit back and assume that they will get better with age.  That is why this idea that children "will continue to develop, learn, gain skills and adapt as they age" is so harmful.  Some children may grow on their own while others will require constant work to move forward.  You can't assume that they will get better simply as a function of aging.

Complaint #5 : Recovery

Apparently the ASF is against the idea of "recovery" from autism -
“Recovery” can be a useful concept, but only if defined as the ability of individuals with ASD to lead fulfilling lives, given the challenges of their condition.
No, recovery is a useful concept because it implies that a person has recovered from autism.  The way that this is phrased presupposes that autism is a life-long condition and is built into a who a person is.  For a foundation that claims to be science based that is a very far-fetched assumption.

Science has no clue what causes autism or what biological effects it has on the body let alone any clue as to whether the effects are permanent and unalterable.  There are certainly hints that it is permanent but there are also hints that it is an ongoing biological process.  Yet the ASF seems to be against looking for a real cure for autism.


  1. Interesting post with some good points. Perhaps you could email them and let them know about the PDD error--it may simply be an oversight.

    The site has some work to do, definitely. It may stem from the small staff size, which is worth considering.

    The 2009 990 form is available on guidestar.

    So there is some transparency, more than is available for some other supposed 501(c)(3)autism non-profits. One wonders why no one's noticed one key autism organization that claims the 501(c)(3) status but has no 990s on file. Or if people have noticed, why it is nothing is ever said. Perhaps some topics aren't safe to speak about. After all, even I'm being cryptic here. :)

  2. Thanks Kim.

    I suspect that PDD description is purposeful because the same delay vs disorder distinction was used in other places on their site. But maybe I will drop them a line to see.

    That 990 is interesting because it raises more questions than it answers. Such as where did the initial 280,000 come from if the amount received from public "gifts, grants, contributions, and membership fees (excluding 'unusual grants')" is zero. I would guess the obvious answer is Dr. Offit but it isn't exactly spelled out.

    As for other autism non-profits, there are reasons (almost 400,000 of them) that I will participate in walks but save my financial contributions for local organizations that I know will actually spend the money making a difference in family's lives.