Wednesday, June 16, 2010

Coming to Terms

Its now been nearly seven years since Megan, my eldest daughter, was diagnosed with both autism and a comorbid "severe learning difficulty" (known in the US as mental retardation -- it means her measurable IQ is less than 70). Those six years have been a personal journey for me as I first came to terms with Megan’s autism, got lightly involved in the 'cure autism at all costs' movement and then as I saw the results (or non results) of this movement, genuinely came to terms with the fact Megan was autistic and got involved in the neurodiversity movement.

In those days, 2003, there was very little online regarding autism. No blogs existed that I could find, very few forums and little to no email lists. In order to get your "Google PhD" in those days one had to dig very hard indeed. And boy did I dig. Every word I didn’t understand was written down for a further Search session, every name carefully Googled with every permutation of keywords I could think of. Early names I came across in those days may tell you something of the type of information. Lenny Schafer, Mary Megson, Andy Cutler, Amy Holmes. These names and their associated web pages coloured my thinking about autism and my perception of what it was. I can remember talking excitedly with a friend about this new autism treatment that I'd read about called "chelation" and how I was going to do my damndest to get Meg involved. However, that search proved fruitless in the UK. In 2003 I'm not sure any UK chelationists existed. Lucky Meg.

But what really caught my eye was the GFCF diet. The way the information was written about on the web, all I had to do was get Meg on this diet and she would be cured of her autism. I bought a book from Amazon and joined a web forum recommended by the book. With great expectations, we began the diet.

Whilst Meg was on the diet we learnt a few things about our daughter. We learnt that she liked bread and really objected to not having it. We learnt that in biomed circles this was known as a form of addiction and our daughter was essentially going "cold turkey." We learnt that Meg was far cleverer than her official IQ of 70 allowed, as many times she managed to sneak foods she wasn't supposed to be having. We learnt the power of positive thought over the power of truth as we re-began the diet every time she did this. We learnt how to re-organise our kitchen and we learnt that even re-organisation wasn't enough and so bought locks for our fridge and cupboards.

In short, what we were learning was one of the first basic truths about any biomed based approach: it takes over your life.

And even now, in these early days I was beginning to question. Here’s a quote from a blog post of mine from June 2003.

“...I wonder what scientific basis there is for these claims and anyway the trends in what is acceptable in relation to food alter so quickly it’s impossible for u to be sure. So what we intend to do is take it step by step. We’ll start by removing Dairy foods from Megan’s diet and see how we go -- probably making Gluten the next on our "hit list.1"

And so on we went. We carried on excluding certain foods from Meg's diet -- more successfully now we had locks on the fridge and cupboards! -- and she carried on making her displeasure known. We waited and we waited and we waited for some unknown, unspecified point when we would see that her autism was receding.

Nothing happened.

Dr James Laidler, also a former GFCF advocate, sums up how we were beginning to feel:

"My younger son was still on a gluten- and casein-free diet, which we both swore had been a significant factor in his improvement. We had lugged at least 40 pounds of special food on the plane with us. In an unwatched moment, he snatched a waffle and ate it. We watched with horror and awaited the dramatic deterioration of his condition that the "experts" told us would inevitably occur. The results were astounding -- absolutely nothing happened. I began to suspect that I had been very foolish.2"

We had done exactly as we were told. We had given the GFCF diet the time it was recommended we should do for it to begin to work and nothing had happened. Nothing at all.

Like Jim Laidler before me, after I felt foolish, I began to get angry. Angry at myself (as well as guilty as to what I had insisted we put Meg through), angry at some of the parents on the biomed forum I attended and above all, angry at those who were not just "researching" this treatment but making a hell of a lot of money from it.

It was now I began to notice that there were other things that could accompany the GFCF diet -- nutritional supplements, mega doses of vitamins, various detox methods, and as 2003 became 2004 and we moved into the summer of that year my own anger became a determination. A determination that I -- and through me Megan -- would not get caught out again -- "won't get fooled again" as Roger Daltrey famously sings.

I started reading scientific abstracts on autism and the vaccine connection and a connection that had once seemed not just possible but likely melted away in the same way a mirage does -- as you get closer to the truth, the lie fades away.

If the science was highly technical then I would write to the authors and ask for an explanation. Nine times out of ten the authors would be more than happy to talk about their work and would walk me through what they had done and how they had done it. And of course above all -- what it showed.

Online I became familiar with a group of autistic adults and began to have my assumptions about the overriding necessity for "cure at al costs" challenged. I was highly impressed with people like Jim Sinclair, Frank Klein, Clay Adams, Amanda Baggs and of course the now sadly silent Autism Diva3.

This set of circumstances led to what I (rather pompously) think of as my autism awakening. I was being exposed to proper science in terms of causation and treatment, and at the same time, was being exposed to a new way (to me) of thinking about autism.

This new way of thinking about autism included the really rather radical idea that just maybe autistic people might not choose to be "cured" of their autism (assuming one day a cure ever existed). This put them into direct conflict with those who chose a pure biomed way of treating autism, designed as it was -- however badly -- to cure autism.

One of the aspects of the biomed movement that I had once shown was a burning desire to rid my daughter of any aspect of her autism. To the Biomed movement, any approach that is:
a) Not grounded in biomed principles and
b) Not set up with the end resulting of removing all traces of autism from a person
was simply invalid and should not only be mistrusted but actively attacked with what Jim Laidler describes as:

"Utter nonsense treated like scientific data,...theories made out of thin air and unrelated facts.4"

And lo and behold when I tried to post on a biomed group citing science regarding the autism/vaccine non-connection I was attacked in what was -- to me at the time -- a surprising and intense amount of vitriol. I was accused of being insane and of "trolling" the group (trolling is an activity that sees an individual trying to annoy the regular participants for no reason other than the chance to see them annoyed5). Needless to say I wasn't trolling, I was (I thought) providing the group with much needed realistic information.

I soon discovered that there were a defining set of properties that characterise a biomed follower. I discovered this by taking my evolving ideas about autism and my discussions with scientists onto my blog:
  1. An overriding desire to "cure" their autistic child at all costs
  2. An overriding belief that vaccines cause autism in some (any) way
  3. A willingness to listen and act on the advice of other parents only
  4. An unwillingness to want to hear the thoughts of autistic adults
  5. A deep seated mistrust -- almost a hatred -- of mainstream science
  6. The need to see everything that doesn't agree that vaccines cause autism in terms of an Illuminati-type organisation
  7. The need to see those that directly disagree with them in terms of persecution
  8. The members venerate the leaders of the movement and attack anyone who questions them
  9. Dissent, questioning type behaviours are frowned upon
In a lot of ways biomed groups display cult-like behaviours6 and it was somewhat surprising to myself to think that I had been -- for however short a period of time -- a member of something that could be described as cult-like.

But now I was coming up full force against these people. Wherever one went, in the comments section of a news story, on a web forum -- even in the comments section of my own blog, you were coming up against someone -- usually several someones! – who were committed to the biomed movement and all that that entails. These discussions usually generated a lot more heat than light and I'm sure I did my share of biting back (in fact I know I did) but I had become a firm proponent of science and the idea that autistic people had rights and that that one of those rights was their right to be autistic7, and I saw it as a duty to my friends and my family to tackle misinformation wherever I found it.

My blog has evolved over the years to fit this view of the world and now tackles science and pseudo-science on a regular basis. I believe that a purely biomed -- and particularly the more extreme biomed such as chelation, etc. -- treatment regime is not only grounded in bad science, it is dangerous. People have died and been injured. It is past time we got back to the idea that well-designed science can help expand our knowledge of autism.


1 retrieved on 11 June 2010.
2 retrieved on 11 June 2010
3 retrieved on 11 June 2010
4 retrieved on 11 June 2010
5 See for more details.
6 See for more information
7 See for one of the original articles (originally published in 2004) that was responsible for the change in my own beliefs. Retrieved 11 June 2010)