Treating Autism Conference Bournemouth, England
By Martin J. Walker
The Second Treating Autism Conference (HERE) was held in Bournemouth, England on March 13-14th.
Nothing could be more exciting for a campaigning writer, than being at the very centre of a movement that is gradually coming of age. Being at the Treating Autism Conference made me feel connected to something monumental that was about to happen, a sea change in our understanding of how autism can be wholly or partially environmentally induced and consequently treated.
The fulcrum of the shift in our perception of autism spectrum disorders (ASD) might be simply described as genetic theories against environmental causes. Genetic causation is the 'old paradigm' that survived in a world unwilling to admit to any other cause, while environmental causation of a variety of illness is generally an idea that has grown since the Second World War, and specifically in relation to autism over the last decade.
Although 'clinical ecology' or 'environmental illness' has become a bone of contention in relation to many contemporary illnesses, two things stick out in my mind. First because environmental toxicity is not just a diagnosis, but to some degree an accusation; all claims of illness due to environmental toxicity are challenged by industry, whether the food industry, the building industry, the drugs industry or for example the asbestos industry. You can be sure if environmental toxicity raises its head 'the diagnosis' or any movement associated with it, will very quickly draw down upon itself considerable criticism. I was quite amazed to read recently in the work of a noted autism campaigner I much admire, that the matter of conflict over industrial environmental toxicity had been all but resolved. This is quite wrong, the battle over environmental toxicity, within and without the factory, within and without the home and especially in relation to food, is still in full flight.
A second thought in relation to environmentally induced illness crossed my mind on the first day of the conference. I was suddenly struck by the dislocation and lack of co-operative thinking between different groups affected by environmental toxins. This is in part a product of the considerable distance that exists between industrial processes, workers, trade unions and, on the other hand, citizens unconnected to any kind of lobby. In short, while occupational diseases with environmental causes are analysed and their victims defended by a number of lobbies, academic and trades organisations, the citizen or the family domestically assaulted by environmental toxins, has few places to turn.
The Treating Autism conferences and the movement that is forming around them based on bio-medical treatments are clearly on the environmental side of the equation and the fact that even today the movement is relatively isolated tells us a lot about the trajectory of their arguments and the questions that they pose to the broader society.
What separated this conference from the first one that I attended in 2007 was not only its size but the fact that it represented a growing body of opinion backed by science. The conference now has the feeling of a growing popular movement, the small group of individuals who might have been easily termed 'cranks' a couple of years ago are now joined by a multitude of parents able to describe the same circumstances of illness, treatment and recovery. There was a good range of speakers at the conference, who dealt with the whole spectrum of problems faced by parents, although as the organisation’s name suggests the emphasis was always on treatment.
The conference gave parents and interested observers a chance to listen to what might presently be called the alternative science of autism. This alternative was, however, at the gates of the walled city, an alternative almost ready to metamorphose into an orthodoxy. Two of the new experts, Dr Wakefield and Dr Bryan Jepson, the author of Changing the Course of Autism, are now working at Thoughtful House in Texas, and apart from Boyd Haley, who gave a presentation on the effects of mercury toxicity, they were the main speakers to address the environmentally causative science of ASD. Other speakers focused more on matters equally scientific, but mainly relating to nutrition and the relationship between digestion and behavioral states.
The more specialised presentations were interspersed with case histories of recovered and recovering children; children who had been prised out of their autistic mould by the hard and unrelenting commitment of their parents, who were themselves learning all the time. As one couple said during their presentation, 'Everything we gave to our son we tried ourselves, sometimes with startling results'. There was much talk about the leaking gut, enzymes and inevitably the kinds of treatment that wouldn't be recommended by your local General Practitioner.
Inevitably, there are differences between speakers, especially where individuals are proposing their own particular theories, but on the whole there was considerable equanimity over causation but a little less over treatment. There was only one sour note in the presentations for me, when one of the speakers who spoke with particular dogmatism about their own theory of gut damage suggested that there was absolutely no use in using a gluten or casein free diet, because they did nothing to repair the gut. I found this suggestion very disappointing, for two reasons: first, a casein and gluten free diet can give the first sign to the parent that their child's condition is treatable and as long as they don't stop there this might give them the courage to move forward into less well charted territories. The other reason I found this remark disappointing, however, was that it reminded me of something that the orthodox medical consultant said to me when my mother was dying of cancer.
Although I didn't hold out much hope for an 'alternative' cure for my mother’s liver cancer, especially given the stage at which it was diagnosed, I thought that it was not only worth trying some of the classic alternative treatments but perhaps more importantly, using palliative nutritional treatments which at least offered some respite from pain and didn't actually make her condition worse. It was in that frame of mind that we began giving my mother an optimal nutritional organic food diet together with a regime of vitamin and mineral supplements. When I visited the hospital after my mother's diagnosis, the consultant went to considerable lengths to show me with diagrams what was happening to my mother's liver. Because I have spent the last twenty years working with nutritional therapists and researching alternative therapies I was keen to propose a nutritional point of view. When he had finished, I suggested, 'Presumably, good nutrition and supplements will help in this situation', the doctor looked at me, his face stern: 'No, you should not go down that route, your mother is dying, she should have everything and anything she wants'.
I looked at him, trying hard to keep the anger out of my voice, 'So, lots of ice cream and cream cakes then?' He answered without showing any signs that he had processed the information. 'Yes, anything that she wants, that will make her happy'. Obviously I ignored this advice and although my mother never showed any remission from her cancer, she did at least live a little longer than the time given by the consultant and was almost completely free of pain in her last days.
One of the American speakers did make the point that doctors in training in the States are given no instruction in nutrition and asked rhetorically, before moving on, if anyone knew how long they got in Britain? I could have told him that the maximum curricular education in nutrition for most medical courses in Britain is three hours in five years. In light of this, it was really exciting to attend a conference about a particular 'illness' that might be treated nutritionally and bio-medically. Not surprisingly, I have felt throughout the last two years while reporting the 'trial' of Drs Andrew Wakefield, Simon Murch and Walker-Smith, before the General Medical Council (GMC), that some part of the prosecution has been promoted by their nutritional approach to gut problems and their treatment. All three gastroenterologists consider nutrition to play a major part in their work. We have to remember that opposition to treating autism lies not only with the classic genetic autism diagnosis, or with the pharmaceutical companies and government who need desperately to support their vaccine programme, but also with the processed food industry with which lies much responsibility for gastrointestinal illness.
The strongest feelings that I had leaving Bournemouth, were on two levels, first in relation to the NHS and secondly with respect to large meetings of real people as against virtual communications. In relation to the NHS, I found myself in complete despair. During my research over the last four years into the conflict around MMR, I have grown used to understanding that hidden government cabals and sponsored lobby groups, wedded to the pharmaceutical companies and the pharmaceutical companies themselves are at the centre of the battle to deny autism vaccine damage. These conspiracies of power have seemed quiet different in my mind from the organisation of the NHS. However, seeing hundreds of parents starting out on a battle to reclaim the health of their children, immediately made one realise how massively the NHS is failing them. That the awe-inspiring initiative of the late 1940s has turned into an ossified special interest group, unable to move forward, or believe in those to whom it should be answerable, is very sad. The thought that parents are being left to fend for themselves in the face of this family calamity is perhaps only offset by the fact that organising as they are, for themselves, will inevitably make them stronger.
Undoubtedly, a part of this strength will come from the fact that affected families are co-operating, meeting together and exchanging ideas. Nothing gives strength to people facing adversity more than the close support and empathy of fellow sufferers. It was ultimately this message that I carried away from the conference with me, that in co-operation there is strength. A strength that will see these parents and their children formulate the diagnostic means and finally the treatment options to recover their children.
Martin J Walker is an investigative writer who has written four books about aspects of the medical industrial complex. He started focusing on conflict of interest, intervention by pharmaceutical companies in government and patient groups in 1993. Over the last three years he has been a campaign writer for the parents of MMR vaccine damaged children
covering every day of the now two year hearing of the General Medical Council that is trying Dr Wakefield and two other doctors. His GMC accounts can be found at www.cryshame.com, and his own website is, www.slingshotpublications.com.
The treatment category is sponsored by Lee Silsby, the leader in quality compounded medications for autism.
Great write up - just wanted to make a comment.
"There was only one sour note in the presentations for me, when one of the speakers who spoke with particular dogmatism about their own theory of gut damage suggested that there was absolutely no use in using a gluten or casein free diet, because they did nothing to repair the gut."
In essence this speaker is correct in as much as many parents (myself included many years ago) were led to believe this was the "answer" to recovering our children - where it clearly is not - it only removes some of the "bullets". I lived my life for 3 yrs in "paranoia" with regards to gluten etc. It doesnt heal the gut - and the gut is the true issue here - the peptides that are produced are not unique to our children - we all produce them as part of the digestive process - what is unique is the huge holes in our childrens guts that allow the molecules to escape before they have been fully processed. In hindsight i felt, for my child, doing the GFCF diet was not my best move - from a nutritional perspective - it was adding key foods in their natural state back into his diet that made the big difference to his overall health and back on the road to health.
with regard to our NHS - you are so so right - i feel my son is a second class citizen despite being largely recovered through hard work and much expense, there are not "therapies" available to him unless i fund them but they are available to children without an autism label (whom i hate to say are probably perceived as a higher priority and more deserving!). I think we have such a long long way to go in terms of the nhs believing there is something that can be done to help our children - but for now we just have to continue ignoring all the negativite "advice" we are given and just fight on alone in the hope we can prove them wrong. It doesnt just stop with the NHS but Education as well!
one day hopefully ........
Posted by: nikki | March 23, 2009 at 07:17 AM
IF 1-48 boys have autism in the UK, vaccinate, and get this below, they don't have a chance to calm down the epidemic!
http://www.youtube.com/watch?v=f-eH9Bb-d1k
Posted by: Kathy Blanco | March 22, 2009 at 11:56 PM
"There was only one sour note in the presentations for me, when one of the speakers who spoke with particular dogmatism about their own theory of gut damage suggested that there was absolutely no use in using a gluten or casein free diet, because they did nothing to repair the gut."
My understanding is that when you do have a leaky gut, and are unable to break the gluten and casein peptides down, that they will enter the bloodstream and create problems. I am unsure if the gfcf diet actually really heals the gut directly, so the speaker might be right after all.
Mainstream medicine does not see the stomach as playing any role in initiating and promulgating the disease state in individuals, a thought that is anathema to how alternative medicine works. Little wonder then that it is indeed alternative medicine that is making strides in healing people of chronic disease. It is kind of shameful that after all the money these doctors are spending on their education, that they are unable to treat and cure chronic disease. And even that is not really surprising given that they do not even understand how chronic disease is triggered. How do you treat something you do not understand? You can't.
Posted by: gfcf mom | March 22, 2009 at 10:53 AM
Martin, what a great piece!!!
"It was ultimately this message that I carried away from the conference with me, that in co-operation there is strength."
You are exactly right. I was never so alone as when I realized that no one believed anything had happened to my son. The concept of "vaccine-injury" was like talking in a foreign language. The idea that I was simply to accept the problems as God given and not enviroment (I'm being nice), was beyond my abilities as a mom. I knew something had happened. To be able to come to AoA and have so much information at the fingertips...plus the bonus of a network of families all in your shoes, or at least your color shoes:) is a blessing that is indescribable. And with all the nastiness in the world...a parent is still ultimately a parent, and in that, we will protect our young and fight for their survival. I am thankful for all here and for people like you that continue to fight the good fight simply by bringing it to light continually in word.
Maybe one day....
Posted by: kathleen | March 22, 2009 at 08:51 AM