autism, demons and disordered thinking

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.

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8 thoughts on “autism, demons and disordered thinking

  1. Hi Mike

    The reason why i continue to read your blog, is that you are in it FOR autism and all effected ( can i say effected?) by it – including the parents; and i thank you for this post of yours, which is very good and has clarity. Turns out the biomed parents ( mea culpa) are a diverse – if albeit neurotic – bunch huh?!

    Regards

    Ajai

  2. I think you make an important point when you say, “The kid has to act normal whether he is or he isn’t.” It must be extremely difficult for people who have built their whole lives around conforming to find that their child, and by extension their family and themselves, will not be conforming. That is an enormous hurdle for some people to jump. I wonder if there various workshops that are given for parents should include a few workshops in how to enjoy being different.

  3. I dunno, Mike, speaking as a parent who is both accepting of their children’s autism and determined to find any way possible to improve their chances of an independent life, I think something is missing from your biomedical assessment.
    I relent that there truly are those within biomed who hold to the tennents of exorcising the demon autism for the hopes of a Stepford child using any tool possible to remove what they think (or been told) is the cause of their child’s autism. But I would submit that many to most of us are just trying to improve their child’s chances for a better future. Through therapies, through advocacy and yes, through carefully chosen biomedical interventions.
    I agree that adherence to the dogma of vaccine and blood brain barriers premises and the militaristic attitudes toward defeating the autistic enemy are dangerous. But finding potential medical reasons for behavioral issues; finding behavioral/therapeudic interventions to help them better deal with communcation/concentration issues should not be construed as fighting against a child’s true nature. On the contrary, it can be PART of fighting for acceptance, understanding and support.

    There’s probably a blog in this for me, don’t know if I’ll get to it though…

  4. livsparents and ajai,

    I am not against parents who observe symptoms, seek treatment and observe improvements in the health of their autistic children.

    My target is the quacks who tell parents that autism itself is symptomatic of a hypothetical toxic insult. They then offer tests from laboratories who are in on the scam which confirm that the child is ‘poisoned.’ The quack then sells an overpriced remedy that takes years to work.

    It is classic. The parent is hooked. They pay out lots of money. They have a financial and an emotional investment in believing the quack doctor.

    Autism Acceptance says,
    “Yes, my child is autistic. They need help. No my child is not poisoned or dehumanized by their condition. They are autistic and they need help. They do not need a cure. They need accommodations at school, acceptance by their peers, understanding from their teachers, access to therapies that do help like speech therapy and occupational therapy, a realistic transition plan into adulthood. They do not need quack doctors prescribing untested drugs to cure unproven, hypothetical, biomedical insults.

  5. livsparents, very well put. Mike, thanks for “clarifying” your statements. I agree with livsparents, and would like to add that we do ABA and speech therapy with our 5 year old autistic boy, and we also send him to preschool with an aid. ABA is not a perfect therapy, though. It does not really offer a socialization aspect since it is a 1-on-1 therapy with a tutor. One of the things it tries to do is “replace” the “maladaptive” behaviors (eg, stims, hand flapping, toe walking, etc.) with productive ones. This seems fine on the surface, but after seeing this attempted for some time with our son, it doesn’t appear to work, and, almost seems unnaturally for my son. It seems like he needs to stim and to hand flap as a “release”, if you will (a release of stress, a release of excitement, etc.). ABA’s reasoning here, I guess, is not so much that he “conform” with everyone else, but that he appear to “fit in” with the other school kids so that he is not bullied, made fun of, picked on, verbally and emotionally abused, looked down on, etc., by his piers and teachers (mostly his piers). Let’s face it, kids can be very abusive to other “weaker” kids, especially in school. Believe me, I’m all for autism acceptance, but adults are mature enough to understand it and retain it, but kids will say they understand autism, and may understand for a few fleeting moments, but all too often will revert back to pier pressure and immaturity and continue to kick the “slow” kid while he is down. This would be very emotionally painful for my son (and for me).

  6. Mark
    regarding stims most autistic adults I talk to would agree that stims perform a vital function like the ones you described. The trick is not to remove the stim but to provide a socially acceptable alternative that does the same job but does not draw attention to the person in public places and put them at risk from ignorant strangers.

    The ABA approach to stimming sometimes seems analogous to teaching someone not to scratch but not doing anything about the itch.

    Regarding disclosure, with early diagnosis it is possible for young children to grow up accepting autism or at least the autistic person they know. Many siblings manage this, especially younger ones for whom the autistic big brother is normal for them.

    This happened with a friend of mine. In nursery and primary school they gradually built a circle of friends around their son. When he moved up a school some of the buddies went with him but there were new kids in the class. So the teacher gave them all a talk about autism and how it affected Joey [not his real name].

    His old school friends complained to the teacher. “Why are you picking on Joey? It is not his fault he is autistic.!”

    For them autism was a natural part of their friend and not something he deserved to be to be singled out for.

    You do have to catch them young and explicitly teach this sort of thing. Otherwise kids will absorb the prejudices of the age.

    Leila Berg, in her book “Look at Kids” tells the stoy of two inseparable friends. Then they go to school together. On the first day the little girl comes home on her own.
    “Where is Jonny?” asks mum.
    “He’s not my friend any more. He lied to me!”
    “How did he lie to you?”
    “He never told me he was black!”

  7. Interesting post, but I think you might be too kind when you conclude that GCFC diets etc are “fairly benign”. It is entirely possible to eat a healthy diet while excluding these foods, but that does demand a certain amount of competence. I can think of some nutritional therapists etc. – advancing biomed type approaches – that I’d be reluctant to let treat my goldfish… Some seem to struggle to understand that children need to eat enough protein etc, and enough calories to grow – things that high dose supplement pills etc. don’t supply.

    GFCF diets etc. should be relatively benign if handled sensibly, but I’m not convinced that they always are…

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