Petition: Change the WrongPlanet Home page

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"Asperger's Syndrome, a pervasive deveolpment disorder, is a form of autism."

I call upon WrongPlanet.net to delete this very phrase 'pervasive deveolpment disorder' from its homepage. I think it is an insult against people on the autistic spectrum, that it violates fundemantel human rights of the dignity of man, and that it is plain wrong as well.

I start my argument with the observation, that there is no scientific consensus on what autism actually is. How could one legitimately speak about a disorder in respect to Asperger?

The present diagnosis criteria for autism is a mess. There is early childhoos autism, autism, asperger syndrome, rett's disorder, ad(h)d, hyperlexia (comming up), pervasive deveolpment disorder not otherwise specified, non-verbal learning disorder ect. Specifically noteworthy about Asperger-Syndrom ist that in was included in the DSM only ten years ago in its fourth edition, and that there is going to be a DSM-V with maybe different diagnosis criteria.

The lines between between ADHD, Asperger and Autism are not always clear as well. 60% of people diagnosed with Asperger have received an ADHD diagnosis prior to their Asperger diagnosis. Missing nonverbal-communication seems to be a criteria to distinguish ASHD and Asperger. What than is the difference between Asperger and non-verbal learning disorder? The diagnosis criteria between Asperger and Autism however mainly differ in the ability of the person to use language. It happenes that people receive a diagnosis of early childhood autism and later receive a diagnosis of Asperger, as soon as their language abilites improve. This may have to do with society which values verbal thinking much higher than for instance visual thinking. If your child doesn't like to talk, it does not take long until it is labeled to have a 'deveolpment disorder'. Later in life, if your have 'significant imparment' in hilding a job, you problby must be 'disordered', too.

It also seems to depend on the kind of professional you visit, wheather or not you get diagnosed with dyslexia, hyperlexia, dysparaxia or asperger. In a way, you can call it gambling. If you know a lot about the conditions, you can get several diagnosis at once, or see to a doctor that prefers the one or the other diagnosis. Here is why that is:

I claim that present diagnosis criteria for autism are flawed by the (ab)use of statistics in psychology. If the term autism is applied to the top 0.1% of people who have least eye-contact during conversations. There is an artifical - statistical - line between those diagnosed autism and those not diagnosed with autism This line seems to me to be completly unreasonable. Why is the line at an estimeted 0.1% Why not 1% Why not 10% What about 20%

In fact, US psychatrists now diagnose what they call 'subclinical' autism, or 'sub-syndromes'. This term exactly reffers to people diagnosed with autism who do not match the statistical requirements of present diagnosis criteria in use (DSM-IV). So there is indeed a range between statistic average of eye-contact, and extremes of 'to much' or 'not enough' eye contact. However, the use of statistics as today in the DSM (diagnostical and statistical manual) deletes all the data on people 'in between'. Yet practiniors start seeing and acknowledging these people between 'normal' and 'autism' now. The statistical line is falling.

Why are there statistics in the first place? Because its the way psychologist today decide weather or not someone gets a clinical diagnosis. And that is because until today, only social skills differences are used for diagnosis criteria of autism and asperger. There is no hard, objectivley meassureable evidenve to diagnose autism, such as neurological or genetic testing that is conclusive on wheather someone does or doeas not qualify for a diagnosis.

And asperger was only admitted ten years ago into the DSM. Does it mean social skills become more important in the last ten years? And why do we have to part of a culture that only values its citizen by their degree of sociel conformity. I am afraid, that lots of people won't call an Aspie to have a 'disorder', as long as he makes good money. Money seems to be a major criteria to judge people today.

It should be noted that a lot of non-social qualities of Asperger or Autism are not mentioned in present diagnosis criteria, such as sensory integration or fine motor developement. To different degress, sensory and motor issues can be found among people diagnosed with ADHD, Asperger and Autism. While the Monotropism theory explains this phenomena as a result of people having an attention-tunnel, it remains unknown for the most part. Instead, a cultural thrive towards conformity is taking place, and calls people to be 'disordered' for someting like 'inappropriate use of eye contact'.

Above all, there is no reason to believe that Asperger or Autism has ever started to exist. How do we know it is not part of the diverse genetic heritage of the human population? How dare we can call people 'disabled' as long as we don't know wheather these people are just optimized to live under different conditions of environment and culture?

I wonder how much of an issue this controversy about terminology is for you. Is it a big issue? For some it obviously is. For those who don'T care much I say, let's stop using the term 'disorder' as long as we don't know that is a disorder. And get statistics out of psychological assessment tools.

Yours,
attention-tunnel

Last edited by attention-tunnel on 30 Oct 2004, 2:25 pm, edited 2 times in total.

Attention-tunnel, I'm confused by your poll.

What do you mean by "that's a stupid question." Is it a stupid question because we agree with you, or because we disagree? It doesn't seem that you have an option to agree.

Personally, the phrase does not bother me.

Edit: Nevermind, it looks like you already fixed it.

You seem to be disagreeing to what the criteria/diagnosis/categorization of Asperger's is, and not to our subscribing to that notion.

Frankly, I get pissed off at people calling it a "disorder" or "epidemic" or a "war against autism" -- but that's the terminology that the rest of the world relates to.

Let's say I'm holding a box. Inside the box is what you and I would call an orange. But let's say for some reason if I showed that object to someone else, they'd call it an apple. So, in this analogy, if someone comes and asks me what I have in the box, if I told them it was an orange, they wouldn't understand. I'd have to tell them it's an apple, even though you and I both know it's an orange.

I guess that's kind of a dumb analogy, but you have to put stuff in terms that other people can relate to.

Whether or not we use "pervasive development disorder" is something to be debated. I'm not too convinced we need it, but we must keep in mind that in order to communicate with the rest of the world, we must use the categorizations that the rest of the world uses, if only in such communications.

I agree - in the UK AS is generally referred to as an "autistic spectrum disorder" - whether 'condition' would be less stigmatising is debatable, but as those are the terms used by the outside world they have external meaning - as we use 'NT' and 'neurotypical' to describe them, which I know several people find condescending and insulting. So you can't win...

dunc

Asperger's causes us problems. It makes it harder for us to get along in the world in which we live. Disorder is defined as : "To disturb the normal physical or mental health of;"

I don't think that this phrase has any useful function on this page. These are just a couple of words borrowed from a community who has a particular view of our place in society. They labeled us and as a result we have come together to share our views. We now find that their labels are not always the most appropriate way of describing ourselves. We should try then, to conciously avoid them and instead seek ways of expressing our own identity.

I suggest we can well have this site without using the term 'disorder'. So the question is how to refer to the phenomena we associate with 'Asperger-Syndrom'.

First of all, we don't say 'Asperger is this' or 'Asperger is that'.

We could say instead, what we know are facts:

To come back to your analogy:



You describe a phenomena that is called by different names. It becomes a question of which term should be used. One way to do it is to say, that WrongPlanet calls it orange, and the American Psychatric Association calls it apple. That would do justice to both parties. However, this is the WrongPlanet website, and not the APA website. In fact, we can choose ourselves how we want to name it. We can name it apple, organge, or banana, if we want to.

[1]http://www.findarticles.com/p/articles/mi_m0950/is_2_107/ai_70739130

oh god.... come back, jacques derrida, all is forgiven!

Who caares about fitting in? Not me. I like beig myself!

Mich

Beige is ok too.

To be honest, I hadn't paid it much attention until you pointed it out. And I don't think that it's going to worry too much if I continue to do so.

I didn't say anything about fitting in. I like being myself as well.

Asperger's is a pervasive deveolpment disorder. That is why it is referred to Asperger's Disorder as well as Asperger's Syndrome.

Personally, I like using "syndrome," rather than "disorder."

I strongly disagree that "Asperger's is a pervasive development disorder' per se. I laied out my arguments for that in detail. I know the implications of my argument are far reaching. For instance, I understand that it raises strong concern about the doctor-patient relationship if a doctor tells you that you have a disorder my argument can bes used to say that you should not trust your doctor.

Introducing the London Asperger conference September 2004, Lorna Wing quoted a person living in the 12th century she associates with what we today refer to as Asperger's. Asperger's is not a new invention. What has changed though is the outlook of our culture towards people. In the middle-ages, ther was no Asperger diagnosis. But it was a commonly accepted image, that high-achiving people such as outstanding scientists and artistis had to be socialy rahter lonely people in the first place. Being socialy isolated was seen as precondition to being able to achieve outstanding deeds. The way culture looks at people changed now, when society decided to call such people 'disorder' by meaussering their ability with social conformity. This is a tragedy. And it is not scientific.

No one has absolute power to constitute that Asperger's is a disorder. It is an opinion only. You are free to agree or disagree with this opinion. It cannot be regarded as a fact. It is a fact, however, that it was the American Psychatric Assoication that defined Asperger as a disorder in 1994. It is an opinion. Maybe it is a well founded opinion. But it is not a fact.

And a lot happened in the world since 12th cenutry and 21 cenutry that contributed to a rise of the value social skills have in today's world. I maintain however, that it is a fundamental human rights abuse to define the phenomena of Asperger a disorder.


If you wonder which theory of autism I might prefer, please visit the website http://www.autismandcomputing.org.uk

You personally rather not see the homepage saying "Asperger's Syndrome, a pervasive deveolpment disorder, is a form of autism."

It's fine to strongly disagree with facts. There is always a chance of the phrase being done away with, but I haven't heard of such a thing.

There is no scientific consensus of what autism really is. That means for me, there is no theory on what scientists agree so much that they would regard it as a fact.

Here I explain what I think constitutes a fact.
You can of course believe that the world is flat. And you can of course bleieve that the world is round. Both world views have dominated science for centuries. Today there is a consensus among scientists that the world is not flat. That the world is not flat is regarded as a fact. When this happenes, we can talk about facts.

Because such a consensus does not exist about the nature of autism, we cannot talk about a fact that autism is a disorder or not. We don't know, because lexperts diasgree strongly on what it is.


Now I write about the problems of psychology being a 'science' when it comes to autism:

I make another related argument here: In some countries, autism is refered to as a) mental disorder and b) psychic disorder. from a scientific point of view, both of these terms cannot be proven. Why?

Because there is no scientific consensus on what 'mind' is, how it works and how it is supposed to work. In contrast, there is a body-mind discussion. That means some even dispute the existence of mind, argueing it is just the body which operates. there would be no mind that 'thinks'.

Secondly, there is even stronger controversy of what a 'psyche' is, if it exists at all, where it is, how it works, what kinds of psychies there are, how they are different, and what would justify to say a psyche would not work proberley eg. being 'disordered'. Psyche or soul is a concept that is related to soul, which is a more philosophical or religous category. At some points, burned witches for having 'evil' spirits was a commonly accepted practice. How dare we can claim to know, autistic people have a disordered psyche???

Well, I wanted to just discuss the issue of having it on the page, but it's occured to me that we must get into the deeper issues here. So I'll have a go at it.

My viewpoint is that by definition, yes indeed, Asperger's is a disorder. It's differing from the normal functioning/order of stuff. Our minds work in a way that is different than normal minds. It even impairs us in ways. So it's very much a disorder in that sense. However, it is so undeserving of the connotation of that word, that perhaps it's a misnomer of sorts and another term should be used on that page. Allow me to explain..

Let's think of all the horrible disorders a kid could get when they're born. Bi-polar disorder. Or the motor neuron disorder that famed physicist Stephen Hawking was diagnosed with and had to live paralyzed for most of his adult life (see footnote at end of post once you're done reading). Or contact ulcers. Or the photo-sensitive thing that the kids in The Others had. Or any number of horrible things that can happen to a person. Though the distinction between disorders, conditions, and diseases can be foggy, this is what the public thinks of when they hear the word 'disorder'. Do its victims want it to be cured? Yes. Do we want to prevent it? Yes. Are they all bad? Pretty much! Bad bad bad, cure cure cure!

However, it's much different with Asperger's Syndrome (and a great deal of other disorders). Is it all bad? No! It's a mixed blessing. Is it some horrible thing that should never happen to people? No! Should we do everything we can to make sure nobody is born with it? Hell no! The problem is with society treating it as some sort of evil that needs to be conquered in some instances. The fact of the matter is that many of our great people in history are supposed aspies.

So we can see that Asperger's is indeed a disorder, and can indeed be categorized as such in definition. But that in ,connotation, not definition -- NO, it is not a disorder.

The usage of that term, disorder, is dependent upon how we want to communicate what asperger's is. We need to communicate to visitors of the website in a succinct way where we and Asperger's fit into the world. The question is how can we most effectively communicate that to be understandable and quick yet do justice to ourselves and others with the syndrome (I like the word syndrome better, myself, though it can carry a similar connotation). So what we need to do is figure out, if any change, what we should put there. And we need to put into that decision not only the definition of the words we use but the connotation.

The upcoming version 2 of wrongplanet.net will have a brand new re-made welcome screen (as detailed in a sepeate post), so it's great that we're having this discussion now.

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The footnote:

I use the example of Stephen Hawking because, well, would you like to be paralyzed for your whole life? 'Course not! So it serves in that function as an example (though his condition is more commonly referred to as a disease than a disorder, but there are references to it as a motor neuron disorder on the web), but the connotation carries. HOWEVER, in fact, Dr. Hawking's diagnosis was a life-changing event for him. It was a catalyst (along with meeting his first wife). He had these dreams that he was going to be executed. And that's what pushed him to do more with his life. Musta gave him some time to think too, I imagine. So perhaps Hawking could never have made the enormous breakthroughs he made without Lou Gehrig's Disease. In the same way that while many of us are crippled in some sense, a lot of us make up for it with the positive AS traits. But in the first function of the term I mentioned, I think it's a valid example of the possible connotation. Just thought I'd detail that, since I did a report on Stephen Hawking one time. Fascinating man.