The Answer To Autism?

Yesterday, the Herald published a story about how they may have ‘the answer to autism’.

It turned out that it was a story about an upcoming conference in October run by the charmingly named Action Against Autism. My US readers may be very familiar with the speaker list.

The Herald article came out with some choice quotes such as:

…in fact, that American ASD specialists have described it as an “epidemic”. That term may have the ring of hyperbole about it but the facts do appear to substantiate it.

and

According to McCandless, one of autism’s primary triggers is a direct injury to the gastrointestinal system through over-vaccination and use of antibiotics

So I decided to write them an email detailing the _actual_ facts as oppose to the _respun_ facts:

Sir,

I would like to respond to your very unbalanced and misrepresentative article regarding autism, its status as an ‘epidemic’ and the likely causes and treatments of autism.

In your article you state that:

In other countries, most notably the US, the situation is even worse, so much worse, in fact, that American ASD specialists have described it as an “epidemic”. That term may have the ring of hyperbole about it
but the facts do appear to substantiate it.

You are actually in error. The facts (by which I mean scientific, peer reviewed evidence) indicate there is *no* epidemic of autism. There is an increase in numbers but that does not indicate an increase in prevalence. A recent article in New Scientist provided a good overview of the situation including the results of the latest research into the subject but I wish to quote from it below:

One team, however, is ahead of the game. Back in July 1998, Fombonne and Suniti Chakrabarti of the Child Development Centre in Stafford, UK, started screening every child born in a four-year window (1992 to 1995) who lived in a defined area of Staffordshire, 15,500 children in total. As a result, they established baseline figures for autistic spectrum disorders – about 62 per 10,000. Then they did it again, in exactly the same place and exactly the same way, this time with all the children born between 1996 and 1998. In June this year, they reported that the prevalence of autism was unchanged (American Journal of Psychiatry, vol 162, page 1133). “This study suggests that epidemic concerns are unfounded,” concludes Fombonne.

The use of the term ‘epidemic’ to describe autism is an insulting and derogatory term to apply to a whole subsection of people. It has connotations way beyond its literal meaning and can only add to the misinformation and hysteria which already surrounds autism.

Some other speakers at the AAA conference include Boyd Haley, who once infamously referred to autistic children as suffering from ‘mad child disease’. On the back of the subsequent uproar, Haley claimed he had invented an acronym based on his belief that autism is in fact mercury poisoning. He said he was referring to *M*ercury *A*quired *D*isease when saying ‘mad’. Obviously a poor linguist, he failed to spot that when lengthened out, his phrase would read ‘mercury acquired disease child disease’.

The hidden agenda of AAA (and the vast majority of the invited speakers) is that autism is in fact mercury poisoning, received in the form of thiomersal in vaccines. They say that the thiomersal (used as a preservative in vaccines a few years ago) has somehow caused autism. They say this has given rise to an epidemic of autism. The science in no way whatsoever supports their position and in fact refutes it. No science has been done that indicates a causative link between thiomersal and autism and these ‘scientists’ inhabit the same murky world of quackery as Andrew Wakefield of recent MMR scandal infamy.

The reason I say this is that not only do these ‘scientists’ believe (in the total absence of proof) that autism is mercury poisoning, they also believe that a very controversial type of treatment – chelation (pronounced ‘key-lay-shun’) can ‘cure’ or ‘reverse’ autism. Again, they have no evidence for this belief – no science has been done on its efficacy. In fact, one ‘renowned’ chelationist Dr Rashid Buttar peddles a trans dermal form of chelation that come in the form of a skin cream. This cream has also never been tested for safety or efficacy. It is in fact highly unlikely to ever pass through the skin. Dr Buttar charge $800 for a consultation. He also believes he can cure cancer and reverse old age.

Recently, another form of chelation called EDTA-IV chelation killed a 5 year old autistic boy in the US . This procedure was carried out despite there being no link between autism and thiomersal, no real similarity between the symptoms of autism and the symptoms of mercury poisoning and no research conducted on either the safety of, not the efficacy of, chelation as a treatment for autism. One of the speakers at the AAA conference, Anju Usman, was the close colleague of Roy Kerry, the Doctor who administered th dose of EDTA to the five year old boy above.

On the other hand, research into valid, respectful and non-dangerous interventions has dwindled in this country. The figure for monies related to autism dedicated to this research is 8%. From that article:

UK research into the causes and treatment of autism is seriously behind that of other countries, a report says. It says the row over a possible link with the MMR jab has over-shadowed the fact that little is known about the behavioural disorder.

What I fear is two-fold. By pandering to this continuing association with vaccines, autism research risks getting sucked into a biomedical dead end. Its tempting to follow that path (and as Dad to an autistic child I did indeed follow that path for awhile) but it offers no answers and as evidenced above, that path can lead to some very nasty places. People lie in wait like predators, ready to take advantage of your ignorance and charge you to the hilt for the pleasure. I urge all parents to question the motives of anyone linked to the non-scientific treatment of autism. There is often a heavy financial price to pay and sometimes a heart breaking non-financial one.

My other fear is that by allowing people like this to discard our autistic children as the results of an ‘epidemic’ or a ‘living hell’
or to describe our kids as ‘lost’ (my daughter is right where I left her!) we create even more negativity about a condition that already carries a heavy load of stigmatising misinformation. What I would hope for my daughter is that she remains free from people attempting to ‘cure’ her and that we as a society can progress to a point where people like my daughter can be free to be who they are, receive treatment for the debilitating accompanying conditions that sometimes come with autism and that autism can be seen as a difference more than a disability.

Thanks for your time.

###ends###

They mailed me back thanking me for my email and asking for my postal address so they could consider it for publication so I’m hopeful someone somewhere will read it and think twice.