Friday, February 24, 2006

Does Autism Exist?

Certainly, autism exists, otherwise why write about it and why label myself autistic or Aspie? But the question is: does it actually exist as a distinct natural entity or only as a cultural/social/psychiatric construct?

In a paper titled ADHD is best understood as a cultural construct (2004), Sami Timimi explains that there's no objective test that may be used to diagnose ADHD and that reported prevalence rates of the disorder vary widely. This theory (remarkable as you will see) can actually be applied to any spectrum disorder in the field of psychiatry and it fits autism quite nicely.

What the theory points out is that the characteristic behaviors of a spectrum disorder occur to a lesser degree in the general population. So the question arises as to how you distinguish someone who is disordered from someone who isn't. More specifically, how do you distinguish those who are "only a little autistic" vs. those who are "not quite autistic"? Psychiatrists have rules of thumb that guide them in making the distinction; usually this simply means that the affected person or a relative is looking for help. But evaluations by affected persons, relatives and psychiatrists are all subjective. There is no medical test that will determine that someone is autistic, nor is there one that will rule out a psychiatric diagnosis of autism. Furthermore, different psychiatrists will invariably have different opinions as to where the boundary lies.

But surely some people who are severely autistic are truly afflicted by something objective, right? Social construct theory is not concerned with severity. The reasoning continues to apply regardless of where the boundary between normal and abnormal is situated.

Many conditions which are not social constructs themselves are often diagnosed as autism. Such is the case of Fragile-X Syndrome and Rett Syndrome, both objectively diagnosable conditions. And we should also expect that many other objective conditions yet to be identified may also look a lot like autism. In this sense, autism should be seen as both a blanket term and a social construct.

A possible objection is to point out that autism could simply be a blanket term for many objective conditions, and not a social construct. Some would even propose those objective conditions are: Asperger syndrome, classic autism, and so on. The problem with this reasoning is that since the characteristic symptoms of autism blend into behaviors of the general population, the boundary between normal and abnormal is always inherently arbitrary, and the same may apply to the boundary between arbitrarily defined sub-conditions. (The boundary between autism and Asperger's is notoriously problematic as it is [ref]).

Some readers might be thinking that a genetic test for autism will render this theory useless. But this is actually where the predictive beauty of this theory can be appreciated. Scientists are currently expecting to find 3 or 4 or 15 genes that will define a person as autistic. The more genes you have, the lower in the spectrum you are. What social construct theory predicts is that no set of genes that accurately mirror a diagnosis will be found. Genes will only increase the likelihood of autism, but not cause it. And an absence of genes will not rule out a diagnosis. Genome scans to date are quite consistent with this prediction (in addition to being consistent with a blanket term view).

Based on current knowledge about the heritability of autism, it could be argued that the best possible genetic test will only be able to make a prediction of classic autism with 60% accuracy and a very broad spectrum with 90% accuracy – and this would be a extremely sophisticated and complex test.

Falsifiability

Social construct theory is clearly not simply an ideology or a view. It is a scientific theory that could be falsified in principle (with an objective medical test), is useful and makes predictions.

A common misconception is that finding differences between autistics and non-autistics falsifies this theory. For example, pointing out the differences in grey and white matter volumes which have been documented might be thought by some readers to undermine this theory. But this is not sufficient, because (1) The differences observed are 'in average', i.e. the findings cannot be generalized to all autistics, and (2) Such differences would be expected in any behavioral spectrum regardless of where the comparison boundary is situated. Comparing any two arbitrarily selected groups would probably yield neurological differences in average. For example, you could compare classic autistics vs. non-classic autistics, or Aspies vs. those with ADHD, or men vs. women – finding neurological differences is not surprising but generalizing them is basically a stereotype.

Usefulness

At this point some readers might point out that the theory that autism is a social construct is, in turn, a useless intellectual artifact.

The usefulness of this theory lies in the kinds of problems it explains and in that it provides a new framework to think about issues related to autism. For example:

1) Social construct theory explains the "autism epidemic". Any subjective boundary can shift through time. This should also be true of differences in regional prevalence.

2) Social construct theory explains the emergence of Asperger's syndrome as a form of autism.

3) This theory suggests that the psychiatry profession is, perhaps unintentionally, gradually broadening the conception of brain disorder. There appear to be no controls on how much longer this trend will be allowed to continue.

4) Based on this theory it can be inferred that many individuals labeled as having a brain disorder (and labeling perhaps has consequences of its own) in fact do not.

12 comments:

  1. I think everyone is focusing on the wrong thing. It doesn't matter what you call it or do not call it. Currently, in this era, labelling it "autism" opens up doors for therapies and treatments to help the individual obtain a better grasp of language and social skills.
    Personally for my son, that is my only concern. I don't really care if someone labels him "purple monster". I just want to give him as many tools as I can so that he can express himself in the best way that he knows how.

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  2. Currently, in this era, labelling it "autism" opens up doors for therapies and treatments to help the individual obtain a better grasp of language and social skills.

    But that's one of the issues this brings up. If autism is both a blanket term and a social construct, it is probably not advisable to apply therapies across the board, since they are likely not helpful to every kid, and most likely only helpful to a minority of kids. A better approach would be to look at each kid, understand strengths, weaknesses and causes, and then devise a management approach - of course this is much harder than using a big hammer on everyone.

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  3. Hi Joseph,

    I recently did a paper called 'what if there is no such thing as autism'. Essentially, in over a decade of consulting work with 100s of children with autism, I found that many had recognisable multiple conditions which when combined resulted in a presentation deemed 'autistic'. Among these were combinations of gut, immune, metabolic disorders, co-morbid mood, anxiety, compulsive disorders, dyspraxia, agnosias, verbal apraxia, selective mutism, semantic pragmatic disorder (associated with verbal agnosias) and when these things occurred in two sides of the family with different parts of these fruit salads the impact could be bigger in the roll of the dice for one sibling than for the other, and those with collectives of certain personality traits, sometimes the more solitary personality traits, tended to express chronic stress more 'autistically'. When the individual parts of the 'fruit salad' were addressed, the person usually became 'less autistic'.

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  4. It's funny but you go to other countries and things like autism, ADHD, & bi-polar disorder don't exist, of it they do at all it's not diagnosed with even a tenth of the frequency as it is in this country.

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  5. To say someone has a disorder is to presume that there is some predefined definition of what an ordinary person is. Since we are all just evolved from random mutations there is no such thing as ordinary and hence autism is just one characteristic of a diverse range of characteristics in the human spectrum.

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  6. This all seems very theoretical. Two specialists said I am high-functioning autistic (what some call Asperger).

    You have to bear in mind that it was not the specialist coming to me, but me going to the specialist. I think autism is a hought-pattern, that differs profoundly from ordinary thought-patterns.

    In that sense it is very related to the idea of social constructs; it is just that people with autism build up such constructs using different rules. That way, my construct may differ so profoundly from yours, that I can't place what happens in yours in mine. That way I can't be emotionally bound to the other construct, which is most people's construct. And so I cannot react to the things everyone can react to.

    Apart from that, I think that my social construct; or let's just call it 'the world within myself', is largely constructed by myself, not in interaction with the events happening around me. That strikingly coincides with totalitarian thought as described by Hannah Arendt. That allone should point out the gravity of such an affected thought-pattern.

    And which is worse, if you call this thought-pattern normal, I have to be normal, which means that I will NEVER understand why I can't function normally in social interaction. That leads to ideas that there is something wrong with me, that I have no contribution to make and even that I would be non-human. That in turn leads to suicide-thoughts etc. An autistic thought-pattern needs diagnosis. It is dangerous for the people undergoing it (and in some cases their surroundings).

    I may have to add that I'm Belgian (Flemish, actually). Flanders (and West-Flanders especially) is a very closed society, with rigid-rules for social interaction etc. In such a society something like autism can stay hidden for fairly long. I studied in Leuven for two years now, and met a whole different set of social interaction-rules. In an open, university-spirit it is far easier to discover 'abnormal' thought patterns. Might not the changing of societies to more open places & the falling taboes surrounding psychology have something to do with the autism-epidemy? After all, it is not because something is not diagnosed that it is not there, and that people are not experiencing troubles. I think priests etc. just are less likely to call something we call autism 'autism'. Perhaps you should first wonder about terminology, before you take this question further.

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  7. The whole world has been misled by the money-hungry psychologists. Autism would not exist if everybody stopped labeling these children.

    When a child, or anybody for that matter, is labeled with Autism, or any mental disorder for that matter, the world immediately looses patience. If the disorder is very severe that person is often treated as a lost cause and all chance of fitting in with society is gone. From what I have seen a diagnosis of Autism causes the parents to give up on their own children, leaving them in the hands of 'specialists' who perform the minimal amount of work possible so they can work more programs and make more money.

    Everybody needs to understand that not everybody is a social person. When somebody is so shy that they refuse to learn (call it Autism if you must) then they need tutoring just like any other badly behaved child. The only difference is that 'autistic' children may need tutoring at a very young age to pick up life skills most other children would normally pick up by themselves.

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  8. TheNavigateur4/19/2010 10:00 AM

    I 100% AGREE WITH ANONYMOUS. You've all been fooled by the MULTI-MILLION DOLLAR INDUSTRY THAT IS AUTISM. People THINK in different ways.. THAT is the variation between people. LOGIC is the method by which we develop different ways of thinking. People CHANGE throughout their lives. Children can change QUICKLY. But once your kid is labelled. THAT'S IT. Money goes out of your pockets for years to come on medications, therapies etc. etc. But you DON'T focus on the CHILD'S THOUGHTS, their LOGICAL development, developing their UNDERSTANDING... Because you've already accepted they have a CONDITION (which they DON'T!!!!!!). WAKE UP. We are ALL the same deep down. Just WAKE UP!!!!!!!! Thank you.

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  9. I have to disagree with the non-existence of autism. My third child turned autistic in front of my eyes. I know the difference. I saw it happen over a period of 9 months. He was given his pre-school jabs and although I had read there were related problems with this, I didnt have any choice. Without the triple jab he could not attend school. My doctor was adamant that autism and the triple jab had no connection. As a mother and her instinctive ability, I regret I didnt fight hard enough.

    When it came to my youngest son, I was lucky. I had a friend with an autistic son the same age. She had been to America and covered a course to help him. She immediately recognised the changes in my own son and approached me and spent months with me showing everything she new. The process was very simple. It involved getting physically down with the child and in that way letting them express in anyway they needed to. One day my son began to throw a frustrated temper tantrum in a wet playground. My friend told me to get right down there with him, in the puddles, and join him. Well you should have seen the other mothers of the school walk away from where we were, but I continued! My son began to play with me for the first time. He splashed water at me - he looked at me. It had been months since he had approached me of his own will and in this way he climbed onto my lap and stamped his wellies in the puddles. I was soaked and I was laughing and I knew then that to open the cage all I had to do was be prepared to go to it and open it up by reassuring him that he was ok to be the way he was. After that I could show him other ways.

    My family did not believe there was anything amiss with my youngest son. I did not bother to try to educate them. I was on the way to truly assisting him to see and understand the world as fully as he could. He is 12 now and has a wonderful way about him and because I have been so open with his siblings about his repetitive habbits and have asked them to understand, they have shown him their worlds too. He sometimes checks himself and makes a big effort not to fall into the comfortable ways that his mild autism wishes of him. He is shy but uses humour. He used sarcasm this year for the first time and we all laughed so much and he was quietly pleases with himself. It is however an effort for him still. Our pride is beyond anything but we do not make a fuss. He does find change challenging. But I have been able to put in strategies to ensure he sees beyond these worries and addresses his feelings as best he can. He still asks me why he has pains in his tummy when he doesnt see his father for months, then says he knows, he just misses him. It is always a constant analysis for him, but in the end he will see how to be natural with people and know better than most what he can and cant cope with. His mental health is safe and in his control now.

    It is about placing strategies. Once these are there, the person (and not always a child for my present lover is also autistic and I work gently with him) can see how others see. And the more people offering views on their worlds, the more we can make informed choices. Everyone sees things differently. Coping is another thing and autism reduces the ability to cope.

    The world is a complicated and intricate place and we all create our own personal to us. Maybe I understand autism because I have traits myself. Maybe everyone does, but to see a child lock himself away - I know autism is real. I know it is treatable. And I know no-one needs to make a load of money out of the condition and that this industry is extremely unethical.

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  10. so who in history has shown these totalitarian traits of low level autism and been regarded as a hero? Who in power and authority has got there because of their inability to regard others as having any authority over them? I know many people in my life with autistic traits - I even have them myself. I am an entertainer but I hate to be just part of the party. I can't chit chat and people find me rude where as I see myself as honest. I have a faith in God which is not able to be rocked. I have an answer to everything. I like order but never achieve it because I live with those who don't mind and every few weeks I loose my temper and re-order the place and feel a sense of comfort. Maggie Thatcher, Hitler, George Bush, Einstein, Jesus Christ, Mohammed. Great people of history with systematic idealism which has survived in our memories because through their focus and intense attention to detail we made process, formed new philosophies and changed how we saw the world - to see them their way and follow their lead. If these great people saw the world in many different ways and took a bit of info from everywhere they would not have achieved so much (good or bad, up to you) and they would not have believed what they did was for the good of all.

    Mild Autism. I am not so sure we can label once we become adults. If we develop children away from leadership and focus we will never have heroes. Or is that what we want? No one to rock the boat again. Could this be another social religion which stops human success?

    Watch old movies, and see how straight laced men and women were. Watch the freedom we live in now. Its social change and not everyone wishes to keep up. Not everyone sees it as good. Not all parents are up with the times or want to be.

    Our problem is lack of open acceptance of differences. Aspergers diagnosis is exactly that. Opinionated arrogance. I know. I am supposedly suffering with it! Tough.

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  11. There is no such thing as ADD/Asperger's/Autism.

    It's called bad parenting.

    Just beat your kids until they start behaving normally. If it doesn't work, ship them off to an institution and kick yourself for being a failure of a mom/dad.

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  12. Yeah, I've come to understand there really isn't any such thing as "autism". I believe it's all a hoax and an attempt at "professionals" to put people in descriptive boxes.

    For instance, I exhibit many symptoms of autism, even as an adult...I hate most people (really cannot stand to be around them at all...I don't have "panic disorder" or "anxiety attacks"...I'm not afraid to be around them -- I just choose not to because I literally don't care about anything they want to talk about and I don't have anything I want to say to them anyway...I also laugh whenever I see a kid that was running around, disturbing other people and driving them up a wall suddenly fall down flat on their face...I think it's funny.) I don't generally show much emotion at all.

    So my question is, why not just call me a bad person? I mean, I probably am...I am likely "outside normal", but I don't think it's necessary to label people, especially with "autism" or "ADHD".

    Most "autistic" juveniles I've seen don't need anything more than a good, solid attitude adjustment. They don't need coddling and nurturing...they need discipline and parents that aren't afraid to teach their children right from wrong using the tried and true methods that have been used for generations. All this "time out" bullcrap doesn't fix ANYTHING.

    What they NEED to do is stop funding research in areas like this. People are people and as such, are DIFFERENT. Even if different, we still all need to be taught how to function in society. I have no intention to harm anyone, even though I cannot stand people. That's all these juveniles need to be taught -- just how to function, be polite, and not disturb others. You're not going to be able to teach ANY child that with all this touchy-feely crap.

    Oh, and before you reply to this calling me an @$$hole or make other disparaging remarks about or toward me, remember...I literally could not care less what you or anyone else thinks about me, so you would just be wasting your time. :-) I don't care whether you live or die, so I damn sure don't care about your comments.

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