My article on biomedical interventions for autism in Communication has provoked a largely hostile response. Some people disagreed with me. That is fine. I welcome debate. Others thought the NAS was wrong to publish my article at all.
My article was clearly labelled as an opinion piece. I was described as a National Councillor but that does not mean that I speak for the NAS. It means that I was elected by members who broadly support my views. There are also councillors who do not share my views. The NAS has always been about plurality. That is our strength. We are united by our concern for autistic people, not by our adherence to this or that theory of autism, or by our support for one intervention above all others. Plurality also means that when my term is up you get the chance to re-elect me or not. Those members threatening to resign because of my article really ought to stay and vote me out next time next time if they feel so strongly.
I do support medical interventions for clearly identified problems like sleep disorders, ear infections and problems with diet and bowel movements. But they must be targeted at specific symptoms and they ought to be properly tested first.
I do believe that these kinds of problems aggravate the difficulties faced by autistic people and their families and that they are often dismissed by medical practitioners who ought to know better. In my opinion dealing with these symptoms turns a sick autistic person into a healthy autistic person. It does not cure their autism.
I have not read any research that persuades me that there is an epidemic of a new form of regressive autism caused by vaccines and curable by chelation. Chelation is a drastic intervention that has not been tested and approved for therapeutic use with young children. It is used to treat heavy metal poisoning. It is not a treatment for autism.
I do object to people who prey on parents and offer them false hopes at great price. In one sense we were lucky because our son was not diagnosed until he was 12. At three years old he had ear infections, sleep problems, tantrums and no speech. If we had been introduced to the biomedical movement then, we would have bought it all. Now he is 20 and applying for a degree course at college, done without the benefit of any biomedical intervention.
Just because these interventions were not essential for my son does not mean that I condemn them out of hand. It does mean that I want research to provide evidence based treatments for all the problems associated with autism.
The key features of the ‘biomedical movement’ are that it is parent-driven and that parental concerns are dismissed by mainstream professionals. Those professionals who do take up the parents’ case often gain iconic status among parents. They are ignored by the mainstream scientific community at first, but expect to be vindicated eventually.
It is parents who have been instrumental in changing attitudes to autism over the last 50 years. Autism is not caused by bad parenting, is not a form of mental illness and our children are not ineducable. We won these battles and we often find ourselves fighting similar battles today with professionals, who think they know autism but do not know our children.
This explains why so many of us are prepared to give the benefit of the doubt to parents who support biomedical interventions. But it is not a coherent movement.
The ‘Mercury Moms’ argue that their child’s autistic are not ‘real’ autism but are the result of an environmental insult whose effects are reversible; they have been poisoned by the mercury content of the vaccines, routinely administered in the USA.
Others accept that their child is autistic, but argue that whatever caused their child’s genetic predisposition to autism has given them a weakened immune system that cannot cope with environmental insults, such as vaccines, infections or allergies.
There are those that view autism as a metabolic disorder that will be alleviated by special diets and/or vitamin supplements. Then there are attempts to synthesize all these diverse and sometimes contradictory ideas into an overarching theory.
A number of features of the biomedical movement also persuade me that it is not comparable to the autism movement as a whole.
Those of us in the wider autism movement tend to be open to new ideas but sceptical as well. People in the biomedical camp often seem to have made up their minds and are just looking for the evidence to back up their opinions.
There is debate and differences are freely discussed at our conferences and in our journals. Biomedical conferences seem less open to criticism. Every point of view is equally valid except the one that suggests they might be wrong.
Biomedical research is funded by parent organizations. When independent research contradicts them they claim that it is tainted by government influence or the drug companies.
Our pioneers made sacrifices to prove their point. Many biomedical experts profit by selling their own therapies to the grateful parents whose prejudices are confirmed by their research. To his credit, Paul Shattock, Director of the Autism Research Unit, has not pursued any commercial advantage from his work on biomedical causes of autism.
But let’s not dismiss the whole shebang as being about gullible parents who are ripped off by snake oil merchants. Some children do regress after an apparently normal early life. Autistic people do experience atypical responses to all sorts of environmental inputs, including medications. Autistic children do contract painful gut disorders. Some autistic people do benefit from restricted diets.
The first thing we have to be clear about is that the child’s symptoms are real. Some parents have had their worries dismissed because it is assumed that autistic children will have poor sleep patterns, scream a lot and be difficult to feed anyway. It is experiences like this that explains some parental support for Andrew Wakefield and his theory of the MMR link to autism. If memory serves, Nick Hornby author and a father of a son with autism, stated that he had no axe to grind regarding MMR but the doctors at the Royal Free were the first to take his son’s gut disorder seriously and offer him treatment.
The second point is that some of these symptoms may be connected to a child’s autism. But we do not know how. If you are non-verbal and you have constant earache, you will head-bang. That does not mean that your earache caused your autism. Nor does it mean that alleviating your distress will cure your autism. It means you are autistic and you have an earache.
Anyone with an autism diagnosis should be given a full medical work up in case there any other conditions that need treatment. Too often the diagnostic process stops when autism is identified. There are autistic children who have other conditions that may respond to safe, targeted biomedical interventions. To subject children to treatment of questionable benefit and unquantifiable risk, because of a hypothetical possibility that their autism might have some connection with a biomedical disorder, is unacceptable. As such, chelation should be roundly condemned as a therapeutic intervention.
Autism can be a devastating blow to individuals and their families. But it can be positive as well. The NAS approach is all about maximizing the positives, minimizing the negatives and standing up for the welfare of autistic individuals, above all else. Most of the time we can stand together with parents on this. But, when it does come to a choice between the wishes of some parents and the welfare of autistic people we must have the courage to put autistic people first.
Mike Stanton – Communication Vol 39, No 3, pp36 – 37