Kev has just blogged about an interesting discussion on ABMD, an email list devoted to biomedical interventions for autism. The bare bones are that a parent asked some obvious questions about how many recovered kids there were and where was the research that followed them up. From the subsequent replies three points struck me.
1. The Biomedical Approach is not a cohesive whole
Within the biomedical movement there are different strands of opinion. I remember discussions ten years ago about biomedical interventions in which vaccines were barely mentioned, if at all. The received wisdom then was that autistic kids were more prone to infections than their NT peers. Ear infections seemed a common culprit based on parental anecdotes and strep was in there too. (NB Both these infections regularly afflict non-autistic kids as well.) Antibiotics were prescribed that got rid of the infections but also disrupted the beneficial bacteria in the children’s guts. This led to yeast infections which led to leaky gut syndrome and allowed partially digested proteins to pass through the gut into the blood stream.
Some of these proteins would cross the blood brain barrier in sufficient quantities to bind with receptors in the brain and create a condition analogous with opium addiction. When your child was happy, flapping and rocking, he was actually high on the effects of these proteins that had a narcotic effect on his brain. And when he was tantrumming, self injuring and screaming he was suffering the withdrawal symptoms because he needed another fix of the foods that fed his addiction.
The ‘cure’ was simple enough. Exclude the guilty proteins with a gluten and casein free diet. Heal the gut with antifungal drugs and use vitamin supplements to restore a healthy balance. The science behind this theory has never been adequately tested. It could be that some autistic people do have a natural tendency to react badly to certain foods. Avoiding these foods will avoid the bad reactions. Will it avoid the autism? That depends on whether the dietary problems cause the autism or the autism causes the dietary probems. Or it may just be an unrelated coincidence.
Even if it turns out to be nonsense this is fairly benign nonsense. Plenty of people with food intolerances survive on a diet that excludes dairy, wheat and similar grain products. So can autistic people. But somewhere along the line vaccine damage and heavy metal poisoning got factored in and remedies like mega doses of vitamins, chelation, lupron injections and other powerful biochemical interruptions to the systems of autistic children were introduced. I take comfort from the fact that parents and physicians who favour the old dietary and nutritional interventions are not all convinced by the science or the ethics of the newer, more radical interventions.
2. Recovery Does Not Mean Cure
Some of the parents reported how their child had ‘recovered’ from autism and continued to improve on biomedical interventions. Others reported on ‘recovered’ children who were still autistic! Recovered seems to mean being mainstreamed for many parents. If the kid can manage in a regular classroom they are deemed to be ‘cured’ or ‘recovered’ or ‘rescued’ or whateve the word of the day that is used to describe inclusion.
Essentially these parents are saying that, “Bad things happen to kids who stand out, who are different. The fault is with the child. If I can make my child indistinguhable from his peers he will be accepted. I want a Stepford child.” The kid has to act normal whether he is or he isn’t.
3. Parents intervene because we have to do something.
A lot of parents seem to be long term users of biomedical interventions who persist despite the lack of success. They remind me of the parents in the Autism Speaks video who were following the same interventions. At the time I wrote this.
Some of those in the video referred to doctors’ appointments, therapies and interventions costing tens of thousands of dollars a year. But the parents seemed not to expect them to work. They talk of a lifetime of battling with autism and expect their children to still be autistic when they, the parents are dead.
Autism is characterized as a barrier to be overcome. But they do not hold out much hope for their own children. They are trying every therapy under the sun but the big picture is about research that will lead to prevention and cure.
For me the video is not about autism as such. It is about a particular psychological response to autism. There is an ideology around autism that helps to shape that response. In opposing the video I am not denying the experiences of parents. I shared many of those experiences when my son was growing up. I am not denying the lack of services or support. I am not denying the lack of understanding outside the autism community. I am not denying that autism itself can be the source of immense difficulties.
I am concerned to deny the ideology that demonizes autism and distorts the facts in order to justify itself.
These parents persist in fighting their demonized version of autism because they have to. To do otherwise would be to give up on their children – the ultimate betrayal. If only they could give up on their demons instead and accept their children for who they are. That is when the real fight begins, when you fight with your child against a system that denies their right to acceptance, understanding and support.