Wednesday, January 21, 2009

The press's autism boilerplate

The New York Times earlier this week published an article entitled Trying Anything and Everything for Autism. You would think that with a title like that it would be a hopeful story about parents trying to help their children on the spectrum in search of a cure.

You would be wrong.

Rather this article is one of the many boiler plate articles as of late that are attempting to sway public opinion about what autism is and how best to treat it.

It starts out like normal articles of this type talking about "the diagnosis" followed by some descriptions of treatments with a small nod to the fact that autism is not a uniform disorder :

It is also true that autism is highly variable, with periodic improvements and regressions, and most children receive several therapies at once. So it is difficult to say what makes things better or worse at a given time

which is unfortunately one of the last balanced statements in the article. From there we go straight to the FUD

We don’t know what would have happened if we had done nothing.

with a quick stop to listen to the voice of god (although in this case god has a son with autism) proclaim:

In “Defeating Autism: A Damaging Delusion” (Routledge, 2009), Dr. Michael Fitzpatrick, a general practitioner in London whose son is autistic, likened the alternative medicine approach to a return to “medicine’s dark ages.”

Every biomedical intervention, he wrote, “is supported by anecdotes and personal testimonies: it is understandable that parents want to share their experience that their child has made progress, and it is equally understandable that other parents are impressed by success stories.”

Dr. Fitzpatrick continued, “When parents have invested money, time, energy and, above all, hope into a particular treatment, it is natural to seek to attribute any improvement to that treatment.” But, he added, anecdotal examples and wishful thinking are not science.

and finishes up the the enlightenment of the one true treatment of ABA :

The one approach that has been scientifically validated to help, though by no means cure, autistic children is behavioral intervention that mimics the way normal children learn, Dr. Schreibman said.
the results are not instant, but it does work. But the earlier in a child’s life it is started, the more effective it is likely to be.

So, in a few short paragraphs we have the dark ages, wishful thinking on the parent's part, and, my favorite, anecdotal examples are not science. Followed by the one true path of ABA.

Don't get me wrong, I believe that ABA is an effective treatment to use, my own children are benefiting from it. I just don't believe it is enough on its own nor do I believe that it will work for every child.

This is the standard form for these articles now; the diagnosis, the brush with quackery, the voice of reason, followed by the use ABA and avoid the rest of that stuff.

Well, then, here is my question. Where is the science to prove or disprove how well these other treatments work? When a new drug is first introduced to treat some new disease or condition or restless legs it is normally described as "promising" and its potential to help people is played up. But when you are talking about treatments for autism they are "wasting valuable time, effort and money on remedies that lack a scientific basis and proof of effectiveness".

Autism has been around for many years in its current form and when you consider the original label was coined over fifty years you would have thought that there would have been enough time to evaluate some of these anecdotal examples.

Take for example the dietary changes that the article mentions, the gluten-free and casein-free (and sometime soy-free) diet that was mentioned. This is a very common intervention that is used by parents yet there are very few studies that have even looked at the question and none that have some so properly. Yet parent's keep doing it, so lets ask ourselves, why?

For myself I can answer that we pursue the diet for my twins who have autism because it worked - both twins showed a large improvement in eye contact and attention when their diet changed. Although in our case I believe it is mostly milk that they have an issue with.

So how about some science that identifies the subset of people with autism who many have issues with certain dietary elements which them proceeds to measure the physical signs of this intolerance. Then do a controlled study were you remove the substance in question and remeasure. This isn't rocket science.

There are plenty of studies looking for the genetic smoking gun that causes autism but so far none have been found. Why not take some of the funding for these genetic studies and investigate some of the other promising areas?

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