a real debate about curing autism.

A recent report in the Guardian provoked some furious responses in their  Comment is Free section. The story itself was a fairly innocuous account of another study by Simon Baron-Cohen in support of his theory that exposure to elevated levels of testosterone in  the womb carries a predisposition to autism. The furore came in response to the final paragraphs.

If it does turn out ultimately that testosterone is a causal factor in autism it may not be possible or even ethical to do anything to change it though. Previous studies suggest that the level is mostly down to the child’s genes. Researchers don’t know which environmental factors are important.

There is a very live debate about whether autism should simply be recognised as an atypical pattern of development like left handedness which doesn’t necessarily need treatment,” said Prof Baron-Cohen, “It just needs to be recognised as different and maybe supported educationally but not cured or eradicated.”

This is my summary of the criticism generated by Simon Baron-Cohen’s statement.

The very idea! How dare anyone suggest that it is OK to be autistic? It may be OK for high functioning Asperger types and their parents. But what about those of us who struggle daily with severely autistic children who cannot speak, who tantrum and self injure, who cannot manage their basic physical needs without support  and are going to end up in life-long residential care?

And it seems a very reasonable criticism to make. If your child is miserable or angry and has little chance of living an independant life why shouldn’t you want to cure him? I know parents who are actively seeking a cure for their child, who also argue for more acceptance and understanding from society for autistic people. Some of these parents are very supportive of autistic adults who have made it plain that they do not want to be cured. When I questioned this, one told me that she respected ANON’s right to be accepted for who he was but her child could not make that choice. He was low functioning and non-verbal. She would love him to progress to ANON’s level and be able to choose for himself. Until then she was going to carry on looking for a cure.

Reading through the comments on the Guardian website one or two things struck me. Parents who were angry with Professor Baron-Cohen were at pains to emphasise the negative aspects of their children’s autism. mickeydolenz wrote

Would I like my 2 autistic boys to live independently of me in the future? Absolutely. Would I want them to have families of their own? Absolutely. Would I want them to not be continuously frustrated and angry at the world around them? Of course. I really can’t see the argument against curing.

Then purelymedicinal, responded, declaring herself as Mrs Mickey D, and saying that she did not believe in a cure for autism because it was genetic. Then, when mogrammy intervened to argue that autism was a biomedical illness and the answers were all in Bryan Jepson’s new book mickeydolenz retorted,

mogrammy – no, sorry – that’s twaddle. It is a neurological condition – and that’s not theory, it’s fact. It’s utterly repugnant that snake-oil merchants like the one you cite make their living from the vulnerable.

Someone else chimed in to defend the Gluten Free/Casein Free diet and recommend Luke Jackson’s book on the subject. Luke is autistic. He is a clear example that Asperger’s Syndrome is not a mild form of autism. it can be just as severe in its own right as any ASD. The diet does not help with his autism. It helps with his food intolerances. mickeydolenz replied to this as well.

I utterly love my autistic children to pieces and I am at turns fascinated and depressed by their behaviour, as well as piss myself laughing with them. But I am ever curious as to how their brain works and how to unlock their world.

I am glad that mickey can laugh with his kids and that they are not “continuously frustrated and angry at the world  around them,” as he argued at the start of the discussion. This is not a cheap shot at mickey. At the start of the discussion he was angry at the idea that autism could be a positive thing. By the end he was arguing against the idea that his children’s lives would be forever joyless unless he bought the snake oil.

After someone posted an alert on one of the egroups on Yahoo the discussion was swamped for a while by mercury fanatics. But mickey, his wife and others kept the discussion going. They were asking questions and interested in each others answers rather than hammering home a point of view. I learned a lot from reading this discussion.

It confirmed that there are not just two camps – the curebie fanatics and the neurodiverse – slugging it out with each other in the blogosphere. The question is more complex than that.

I would like to think that those of us who advocate for autism acceptance are equally open to argument and discussion. We are not fanatics or timeservers. We are people who live and laugh and love and want, not better children, but a better world for our children. (with apologies to Paul Foot)

13 thoughts on “a real debate about curing autism.

  1. Mike
    You said
    It confirmed that there are not just two camps – the curebie fanatics and the neurodiverse – slugging it out with each other in the blogosphere. The question is more complex than that.

    This is the only thing for sure that I can assure you.
    The question is much much more complex than that IMHO.

  2. Hello there. purely Medicinal here. It’s very interesting to see how things grow and reveal on the web.
    I have come here from the Guardian blog and am heartened to see another place where the polars of neurodiversity and curebies are not the only discussion available.
    Mickey is not here to defend his position, and I wouldn’t dream of doing so on his behalf.
    My personal belief as (please stop me if you’ve heard this before) the mother of two NT and three ASD dx’d children, is that my childrens autism is probably genetic in origin.

  3. Hi Maria
    thanks for dropping by. BTW how is your child doing?

    Purely Medicinal
    Welcome.

    Mickey has no need to defend his position to me or anyone else. He strikes me as an honest guy who is asking questions and looking for answers.

    I am glad you have found this place. I do bang on against the curebies sometimes. But I prefer dialogue to diatribe.

  4. Might I point out that what regulates testosterone synthesis in utero (and everywhere else) is nitric oxide. NO inhibits the cytochrome P450 enzyme that is the rate limiting step in testosterone synthesis. Lower NO and you will increase testosterone levels with no thereshold. There is no threshold for low NO to increase testosterone levels because NO is already regulating testosterone in a feed-back regulatory pathway. Any change in NO levels will be reflected in changes in testosterone levels.

    For the most part I agree with SBC. Exposure to testosterone in utero does affect brain development. That is one of a number of fundamental difference between males and females. The brain structures that develop in utero are (to some extent) fixed. It will not be possible to replace them wholesale, except via brain transplant, which would of course kill the person who’s brain is discarded (a brain transplant is not even possible because the connections can’t be made even in principle).

    I have no doubt that there are many neurological development pathways that have effects mediated by NO. Testosterone is only one, all the other steroids are regulated by NO also. There are others, bone morphogenic protein, transforming growth factor, brain derived neurotrophic factor, oxytocin, fibroblast growth factor, VEGF, HIF, insulin like growth factor, and many more.

  5. Haha! My pregnancy was sustained with supplemental oral estrogen after my bloodwork showed deficits.

    I had boy/girl twins. And I was worried about the effect estrogen may have had on the boy.

    As fate would have it, the boy is autistic.

    How does THIS fit into the theory? Hmmmm?

  6. Testosterone and the P450 substrate?

    Have you LOOKED at the drug doses (LOW) and side effect profiles (HIGH) of any drug any autistic is taking that’s metabolized through the liver?

    So I guess that blows the NO theory out of the water, though the whole host of mitochondrial and chromosomal conditions with autism rather should have anyway.

    And it was good to see debate that wasn’t “IT WAS THE SHOTS! CURE OR KILL!” vs “Ye gods all you impaired NTs think about is yourselves! MARTYR COMPLEX!” (slightly exaggerated).

    SBC, his theories, they don’t always make sense to me but he does make valid points…sometimes…though I wonder if he feels responsible for the whole Lupron debacle because of the extreme male brain theory?

  7. Kassiane, purturbed metabolism of xenobiotic chemicals is exactly what I would expect from low basal NO. With the cytochrome P450 enzymes in a more active state (due to lower NO), the enzyme levels are down-regulated. When xenobiotics enter the liver, the P450 enzyme that metabolizes it generates superoxide, lowers NO local to the enzyme to disinhibit it.

    With low basal NO levels, the regulation of the metabolism of those xenobiotics is out of whack, the body swings from one extreme to another. It is the stabilizing effect of the inhibition of metabolism of the P450 enzymes by basal NO that allows it to be smoothly regulated.

    A state of stress is a low NO state. Any thing that increases stress will exacerbate every condition that is caused by low NO. Mitochondria are regulated by NO. To increase mitochondrial oxygen reduction, mitochondria generate superoxide which pulls down the NO level. Most every mitochondrial abnormality will increase superoxide and cause low NO levels.

  8. Something for the proponents of a genetic explanation to explain to me: My two sons are twins, identical, shared an outer sac in the womb, shared a placenta, one is autistic the other is not.

    Looking forward to your explanations of that one.

  9. What are the respective finger lengths of the two boys?

    http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=15113628&ordinalpos=4&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

    Most signaling of testosterone is local, that is, within the organ, or even group of cells (or cell) where it is generated. Blood levels or plasma levels have little to do with what the local level is at the cell, or at the part of the cell where the receptor is. That is where the level matters, but it is virtually impossible to even measure it, let alone try to regulate it in the dozens (hundreds?) of tissue compartments where it matters. I think that was why SBC was saying it would be impossible to modify.

  10. Pingback: shades of grey on the autistic spectrum. « Action For Autism

  11. Autism is a very complex problem, and it appears that there are many factors effecting the children with autsim. The view on “should we find a cure” should be based on individual cases. My child is 4 years old, still mostly non verbal. He was a normal developing child until around 12 – 15 months old, then was struck by autsim. If i where not to try and find a cure, it would be the same as if he broke his arm at 12 – 15 months and I did nothing to mend the bone. In many circles that would be called abuse.

    If for what ever reason, parents dont want to find a cure or help the child to develope to thier full potential, that is thier choice.

    Until my son can talk to me and tell me , my head hurts, my throat hurts, my tummy hurts, or I love you daddy, or daddy you irritate me, go away. I will try to find a “cure”.

    It is a little more complex that is he right handed or left handed.

  12. T Sherman,
    it all depends on what you mean by cure. To follow your analogy, if autism was like a broken bone, not to mend it would be abuse. But if the bone was missing what would you do? My guess is that you would look for a suitable prosthetic and if one was not available you would want your child to learn to manage without that bone. Meanwhile you would be combatting the prejudice that your child was not completely human because of his missing bone.

    What if someone came along claiming that all this talk of prosthetics and acceptance was wrong because they had a way to help your child grow another bone and return to normal? Would you be sceptical? What would be your standard of proof before you went for their cure?

    This is a very imperfect analogy and I agree with you about how complex it all is. And those of us who do not believe in a cure do believe in doing everything possible to enable children to overcome their difficulties and fulfil their potential. We just refuse to go along with those who try and sell us the impossible.

  13. The impossible needs to be defined. Just a few years ago, it was thought to be impossible that a bacteria could stomach ulcers. Doctors said this was impossible, yet it is true. History is full of impossibles, and yet they come to be true.

    I dont think I am trying to change my child, Just trying to bring him back to the person he was, prior to the autism.

    It sounds to me like you where promissed something, by someone , which didnt come true.
    Do I beleive that there is a magic bullet to fix every child that is afflicted with autsim. NO I truely wish there was.

    I think we both agree that we are doing everything possible to enable children to overcome their difficulties and fulfil their potential.

    Good luck to you and yours in all your future challenges.

    These kind of topics are best between beers!

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