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oracle

Autism is NOT an illness

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Last week I attended the launch of the NAS Educational 'make school make sense' Campaign. As I have said in another post I think that this time NAS have done their home work and got it just about right :) Certainly everything that I have read in their report are issues that parents come to AIM with on a daily basis. HOWEVER the one thing that did make me feel :sick: was the fact that at the launch two of the politicians who gave a speech refered to autism as an illness :huh: The first time I tried to ignore this but when the second guy got up and repeated that autism was an illness, I found myself shouting out, along with a guy I know who has AS himself, that autism is 'not' an illness. Of course they ignored us but it did make my blood boil :angry: I had my 9 year old son standing next to me tugging at my sleeves telling me that I had to shout out that he was not ill. How can we trust the decision and policy makers to do what is best for us if at a National Launch they have such a basic lack of knowledge and understanding :(

 

Today I spoke to the NAS Campaigner Coordinator and decided to mention my concerns to him. He said that they too had heard these statements and were concerned, and that they hope to address this mistaken understanding of autism. I hope so because I have never felt that either of my sons were ill. They have a life long condition which will mean they may well need to access service provision to enable them to live independently but they are not ill are they?

 

Oracle

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Aaaaaaarrrgh :wallbash:

 

I can just about cope with disorder but never illness, I prefer condition - when I'm ill I expect someone to try to cure me, and I have little respect for people who think autism can be cured.

 

I thought this was mainly a US attitude, very sad to see UK politicians taking this line - hope the NAS educates their speakers a little better before letting them speak for them next time!!!

 

 

Z

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This really bothers me too and was 1 of the (many) problems I had with the Katie Grant article.

 

It saddens me to think that someone can stand up to give a speech at a NAS campaign and make this very basic error.

 

How far have we come on from the 'special talent' belief in the last 10 years? Doesn't seem like much :(

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no its not an illness at all. i think zemanski hit it on the head, an "illness" you look to be "cured" but with AS its not like that, yes there are things we can do to make life make a little more sense, but they will always have "AS"

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'Illness'? 'ILLNESS'?!?!?!

 

But that implies that Autism is something that can be caught, transmitted or passed from person to person and the last time I checked, you can't 'catch' Autism. Would these people have said that blind people have an 'illness' or that the deaf merely have an 'illness' :angry:

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Oh dear, just when you get your hopes up that a campaign might actually be capable of making steps in the right direction then the same basic errors are made again. 'Illness'?? It is indeed the implication that it is something that can be 'caught' or 'cured' thats so worrying. :tearful:

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:wallbash::angry: Grrrrrrrrrrrrr.

 

I would define an illness as something that could be life-threatening and last time i looked asd's arn't.

 

H definately isnt ill, he's running along the dining table shouting washing machines at the mo :o:lol:

 

 

Clare

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There is a thing called mental illness. Is this a contradiction in terms? My parents used to tell me not to refer to people as mental, but as mentally ill or mentally handicapped.

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Aaaaaaarrrgh :wallbash:

 

I can just about cope with disorder but never illness, I prefer condition - when I'm ill I expect someone to try to cure me, and I have little respect for people who think autism can be cured.

 

I thought this was mainly a US attitude, very sad to see UK politicians taking this line - hope the NAS educates their speakers a little better before letting them speak for them next time!!!

Z

 

Ditto!

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It doesn't surprise me, sadly :(

 

A month or so ago I attended 'Autism Training' at the residential special school where I work, given by the school's Autism Specialist.

 

The training was opened with this phrase up on the smart board...

 

'Autism is a psychological disorder'.

 

Bid :wallbash::angry:

 

:oops: typo...it was actually 'psychiatric disorder'!! :angry:

Edited by bid

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I suppose some people would look at what we say and think we're obsessed with political correctness. In which case they have no idea what PC is.

 

It's just a want of accuracy because there are so many examples of what harm can be done to any group of people when inaccurate or even downright false information about that group gets spread.

 

To be an illness Autism would have to be a medical ailment which it isn't. To be disorder it would have to feature maladaptive features which it doesn't. To be psychological it would have all in the head and even possible to replicate which of course some claim to have done(the 'Rain-mouse' study).

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Hi Lucas -

 

would agree with you for the most part - certainly on the 'illness' and 'psychological' definitions, but i'm not sure what you mean by 'maladaptive features' and the term 'disorder' (?)

My own understanding of the term 'maladaptive' is that it describes a feature or attribute that is counterproductive in terms of interaction within the environment in which the animal or human displaying the trait lives. While I agree that many of the counterproductive elements arise because of responses to the feature (rather than being directly attributable to the feature) it is a fact that those reactions arise - in the social context in which they are viewed - as a direct result of how the differences are manifest (?)

 

Dunno!

From your POV, what terminology does seem appropriate, 'cos though I accept fully that 'handles' (labels) are very, very dangerous things, there does need to be some sort of shorthand that is readily accessible?

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The features of Autism are not maladaptive because they are not counterproductive and this demonstrable and has been demonstrable. Often it is the reaction of adaptive but atypical features in Autism that is maladaptive and is rooted in a misunderstanding. I've heard of a study refered to as 'the Keen study' where it was found Autistic children recognised when communication with their parents had broken and then they patiently tried many different things to repair the communication with their parents. The parents unwittingly ignored this which further stressed out the children and it would have very much looked like from the parents point of view that the children were being entirely counterproductive. I've not managed to read this study myself yet so this information is second-hand.

 

It is important that Autism is excluded from socially-defined ideas of what is maladaptive and counterproductive because most Autistics hold the same view of Neurotypicals and given the right means to express their concerns usually reveals their concerns to be very reasonable. I think a lot of Autistic people can develop a 'them and us' mentality early if they constantly see evidence of the apparent insanity of Neurotypical people. This was the case for many on Aspergia, the first online Autistic group I ever made contact with when I got internet. We'd just have thread after thread talking about Neurotypicals even though we all had different special interests.

 

As for terminology, it has occurred to me that homosexuality once belonged the catagory of 'psychological disorder' and now it is 'sexual oreintation': a term invented purely for it but includes hetereosexuality, bisexuality and asexuality.

 

I've heard the term 'Neurotype' described for Autism, Downs, Dyslexia, Tourettes and others before on the net and I think that will be the one that eventually catches on.

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Lucas, this is a very interesting point. Once I got the jist of what you were saying (that first sentence was a doozy) I can see this very clearly with my AS son.

 

I worked out years ago that for all his (apparent) negative behaviour and for the times when he is seemingly being uncooperative, or unable to communicate there is always a very good reason. I pride myself on being very intuitive with all of my children and have found ways of communicating with William that help him to explain to me what is upsetting/frustrating him. Then, like this week, he spends time with his dad who has absolutely no understanding or respect for the difficulties William has and there is evidently a clear 'them' and 'us' situation between William and him and thank god for my daughter who has kept me informed of every traumatic moment.

 

I won't go on because basically my brain is made of cheese and I'll end up confusing myself, but your last post has put in words what I 'felt' and couldn't put my finger on it.

 

As for the label thing, what really annoys me is when autism is described as a behavoural difficulty/problem.

 

Lauren

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Hi Lucas/Lauren -

again, agree to a point, and in fact did point out in my own posts that many features of autism are seen as maladaptive because of responses to behaviours, rather than being directly attributable, but this wouldn't apply to all behaviours...

Only here briefly, but one example that comes to mind would be the non-recognition of common dangers. That would seem to me to be maladaptive, and certainly 'counterproductive' ( and I use that term in context to your own post, as I'm sure you'll appreciate, rather than in any judgemental way) to the well-being of the individual(?)

Having said that, I really do like the phrase 'autistic neurotype' as opposed to 'autistic disorder' so I'll try to switch from AS to AN in future.

 

L&P

 

BD

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baddad, yes you're right. There are so many aspects to it all that it probably isn't appropriate to pin it down to any one theory. I have thought at times what William would be like if he was totally left to his own devices and was allowed to decide how to run his days.... and aslong as food was provided I think he'd be what is commonly described as a hermit; being a hermit is what would keep him alive because he has virtually no concept of danger and would easily find himself in trouble of some sort if he was out in the world without supervision. Within the context of our society both of these scernarios could be seen as maladaptive.

 

There are many tools and interventions if anyone wants to 'adapt' to a degree (including NT's), it's down to every individual how far they want/can use these to help them find their way through life as comfortabley and productively as possible for them.

 

As for the labels. I've got several trains of thought on this. With some people when I'm trying to help them understand (educate them) I find that a good starting point is explaining that it is a neurological disorder; then if they've taken that on board in a postive way I try to lead them into a deeper understanding that it's only a disorder because of the environment and that adjustments and support can help them to function well enough to be part of that environment. This probably all sounds like gobbledygook and it's eays for me to say as I'm fortunate enough to have two boys who as far as the spectrum is concerned are fairly high functioning. I know it's a totally different situation for those who are living with severe autism, but even then the proper use of available tools and interventions can help to a certain degree.

 

Anyway, I know what I mean!!!!

 

Lauren

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Wow, got a bit lost by the last few posts on this thread - harder to read and follow than the work I'm (supposed to be) doing at the mo :lol:

 

All I think is that people who refer to autism as an "illness" should be poked with a sharp stick - every time they do it - until they are conditioned to stop (it's pretty easy to condition an NT person) :devil::o:lol:

Edited by Jill

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Wow, got a bit lost by the last few posts on this thread - harder to read and follow than the work I'm (supposed to be) doing at the mo :lol:

 

All I think is that people who refer to autism as an "illness" should be poked with a sharp stick - every time they do it - until they are conditioned to stop (it's pretty easy to condition an NT person) :devil::o:lol:

 

 

:lol: *hands Ya a cattle prod* :blink:

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I guess all I would have to add to that is that non-recognition of danger isn't an exhibited behaviour because it is indicated by an absence of an appropriate behaviour like avoiding danger. But everyone can put themselves in danger without knowing it and often never will know- driving is extremely dangerous when you start talking about the nitty-gritty of it such as burning an explosive substance to create energy to move a two-ton steel rig along while you are strapped to it, that is ###### lethal and no suprise it is one of the main causes of death in developed countries like ours.

 

People seem to make an exception though with disability, sometimes there is a perception that if a person is disabled they must be treated with stricter standards of health and safety even if it restricts them personally. I'm not blind so I can't imagine trusting a mutt to walk me across a busy road but people do and such people had to fight for the right to be allowed the means to go out on their own.

 

Where Autism is concerned I still get frustrated by those who constantly invoke children as if either most or all Autistics are children or claim that there is a such thing as an adult functioning at 'the mental age of a child'(I've never found an adequate justification for the term 'mental age'). When I or another Autistic adult argue with certain kinds of people, they often assert to the effect that because a child can't do something and the child has 'this' then no one with 'this' can do it. A child should be protected from dangers because they are a child, not because of their Neurotype or disability. There are few Autistic adults that have trouble recognising dangers, some of us are very sensitive to danger but for those of us who may have problems recognising danger there is always another side to things. If there's a car coming, there has to be someone driving that car and doing it properly(the DVLA say that most road accidents are not caused by poor driving ability but poor attitudes where drivers don't realise how dangerous driving is).

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Hi Lucas/Lauren -

again, agree to a point, and in fact did point out in my own posts that many features of autism are seen as maladaptive because of responses to behaviours, rather than being directly attributable, but this wouldn't apply to all behaviours...

Only here briefly, but one example that comes to mind would be the non-recognition of common dangers. That would seem to me to be maladaptive, and certainly 'counterproductive' ( and I use that term in context to your own post, as I'm sure you'll appreciate, rather than in any judgemental way) to the well-being of the individual(?)

Having said that, I really do like the phrase 'autistic neurotype' as opposed to 'autistic disorder' so I'll try to switch from AS to AN in future.

 

L&P

 

BD

 

I can see the points being made (I think!) about maladaptive being maladaptive from a neurotypical perspective, not necessarily from an autistic view point which is importnat to remember. I think the thread about stimming is a nice example of that.

 

I agree BD about the issues regarding not recognising danger. Of course this is common to all four year olds but to my son it is non an age-appropriate level of awareness and something that could potentially do him harm especially regarding cars and busy roads. I think another would be some of the sensory issues. Adam hates loud noises and sounds, causes great distress and upset to him but his tolerance fluctuates so some days are worse than others. Maybe there is some benefit to hyperacusis, maybe he'll hear that car coming in the distance and move out of the road but on a day to day level it is something that is counterproductive to him.

 

Liz x

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Hi all

 

not sure if my earlier post was taken out of context(?) I wasn't actually refering to children not recognising common dangers, I was referring to adults i have known who were similarly unaware... Some were unaware 'generally' for want of a better word, and some would become 'unaware' in times of high stress - which is more common/easier to get a handle on but none the less 'maladaptive' in the sense of being counterproductive to the well-being of the individual.

I don't think you can actually qualify these kinds of situations as 'maladaptive from an NT point of view', because they are directly impacting on the safety of the autistic person - there's no 'observational' element to qualify(?)

Another 'maladaptive feature' would be the inability to recognise (i.e.) visual clues/body language in communication... while many difficulties can be overcome with other types of communication etc, at the fundamental level and without adaptive responses being made for this feature the autistic person would certainly find this counterproductive in any sort of reciprocal dialogue they wished to instigate...

This is not the same as a physical impediment, where other sensory input can be rechannelled (i.e. braille/speech synthesis), because the mechanism for understanding those cues is directly compromised, rather than the conduit for transmitting those cues...

 

Hope that made some sense! It did as a wrote it, but i AM very tired :lol::lol:

 

L&P

 

BD

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My answer there is that this is actually an observational thing and the apparent deficit in Autistic people to recognise visual cues is present in Neurotypical people when they need to recognise visual cues from Autistic people.

 

For being unaware of danger in general, Autistic people like Neurotypicals have to be brought to such a state. Autistic people as far as I have seen are constantly looking for danger and find it hard to relax at all, if they don't spot a danger it's usually because something else is impeding them.

 

Many Autistic adults speak of their frustration of NTs who insist on talking to them all the time. Tito Mukhopadhyay has stated on many public occassions in front of his mother that he CAN NOT look and listen at the same time, he is rendered technically blind when someone speaks to him because his brain prioritises audio speech. His mother still continues to talk to him as they walk down the street crossing busy roads, she won't listen to him but he has no choice but to listen to her and put himself at risk. Tito isn't an exception.

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Hi Lucas -

 

I sort of see your first point, but don't think it's as simple as an observational thing... The difference is that in the 'NT' perspective, there is an awareness of the 'deficit' that facilitates an adaptive reponse to enable other channels of communication. From the autistic persons perspective, the 'deficit' is an unknown quantity, and that must compromise the ability to make an adaptive response, or even to recognise that an adaptive response is necessary(?)...

 

As I acknowledged in my previous post, for a majority of adults I've worked with who failed to recognise common dangers there WAS an element of 'something else impeding them', and i accept that even where I (we) weren't able to recognise that something else, it was probably there for the others too. The inherent problem, however, does seem to me to be 'counterproductive' in that the 'something else', was a lesser threat (in real terms) than the threat that WAS being responded to. In a non-adaptive environment, that feature would be maladaptive, wouldn't it?

 

Hope that made sense - again VERY tired... Really MUST start sleeping at night! I'm sure it would help with that!!

 

L&P

 

BD :D

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I sort of see your first point, but don't think it's as simple as an observational thing... The difference is that in the 'NT' perspective, there is an awareness of the 'deficit' that facilitates an adaptive reponse to enable other channels of communication. From the autistic persons perspective, the 'deficit' is an unknown quantity, and that must compromise the ability to make an adaptive response, or even to recognise that an adaptive response is necessary(?)...

 

You see the Keen study contradicted this, it showed that Autistic children recognised communication with their parents had broken down and it was they, not their parents that tried repeatedly and patiently to repair it. I think the reason why you say that from the NT perspective they are aware of the deficit whilst the Keen study said they didn't is because NTs(and this is me talking from my Autistic perspective) misappropriate deficits and often don't see their own faults. It's widespread among the field of Autism: NTs misappropriate deficits and we now have this situation where only good science is being done now showing it is not completely or mostly the Autistics fault when something goes wrong. Because Autistics are usually not in a position or don't have the ability to accuse or explain the NT party's faults, they don't get recognised.

 

I think I've explained once before how some Autistic children lose all their confidence in understanding anything because what they see clearly is contradicted by how NTs respond to it. I described it as when I was younger I was convinced everyone on Earth was an idiot except me(before I was even talking). I didn't begin with that attitude, it had to be proven to me time and again because I had no concept of myself or others having any faults, I didn't know what faults were.

 

I'm not sure what your definition of maladaptive or non-adaptive is, or where you see the difference. I see it as maladaptive being an unmeasured, unreasonable, or unintelligible response whilst non-adaptive is no response whatsoever. In which case non-adaptive is maladaptive and any person placed in a maladaptive enviroment can not act adaptively. Autistics are often placed in enviroments(non-adaptive or maladaptive) that no NT is subjected to and then everyone pretends to be shocked when the Autistic acts unreasonably.

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I'm not sure what your definition of maladaptive or non-adaptive is, or where you see the difference. I see it as maladaptive being an unmeasured, unreasonable, or unintelligible response whilst non-adaptive is no response whatsoever. In which case non-adaptive is maladaptive and any person placed in a maladaptive enviroment can not act adaptively. Autistics are often placed in enviroments(non-adaptive or maladaptive) that no NT is subjected to and then everyone pretends to be shocked when the Autistic acts unreasonably.

 

Hi lucas - my definition of a maladaptive feature is one that is counterproductive for the person/animal displaying that feature within the context of its 'general' environment. A non-adaptive feature would be one that remains constant even when the counterproductive effects have been demonstrated and acknowledged.

The maladaptive feature, to my mind, can only be viewed as unmeasured, unreasonable or unintelligable within the wider context, because viewed from the maladaptive perspective those constructs do not exist.

 

 

L&P

 

BD

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Great! I get to use the Panda as an example!

 

Pandas eat bamboo, this is totally maladaptive and the sods are on the endangered species list because of it. Pandas are not natural omnivores but carnivores and should be living on a diet of meat. They're supposed to eat mainly fish and eggs but because of the loss of habitat they can't really get much of it any more and as this has been the case for such a long time they often don't know what is good for them(my Panda knows ale is good for him, you can't convince him otherwise).

 

Because of the poor nutritional value of bamboo, Pandas need to eat tons of it. Their stomachs aren't very good at digesting it either.

 

So Pandas don't eat what is good for them because it isn't available and they don't know its supposed to be their food because its been so long since they have ever had it. But if they don't eat something they will die. They have adapted to a maladaptive enviroment.

 

But other animals hunt for food, Pandas don't hunt. If Pandas hunted their chances of survival would greatly increase. But it is not a Pandas instinct to hunt and may not be within the means of most, so they will die and only those who are fit to hunt will reproduce and continue the species. This can be seen as the Pandas behaving maladaptively.

 

You can't decide either of these objectively, you have to make a value judgement somewhere along the line.

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Hi Lucas -

 

No the panda hasn't adapted to a maladaptive environment, it has non-adapted to the prevailing circumstances of its changing environment.

Adapting to the environment, as you've pointed out, would be the panda actually doing what it needs to do and is equipped to do: change its diet...

Sticking with bears (and i know this one ISN'T but, it works for this example!) The koala bear lives exclusively on poisonous eucalyptus leaves, that it has evolved to 'resist'. The logic of this is sound - there are tons of eucalyptus about and nothing else wants to eat them! However, IF the eucalyptus disappears, the Koala will need to adapt or it'll be 'up a gum tree' ( :lol::lol::lol: )

 

Maladaptation would be where the Panda/Koala bear 'evolved' with traits that were counterproductive to living within the pre-existing environment - i.e the koala evolving as a eucalyptus eater in a non-eucalyptus growing environment.

 

A good example of human maladaptation: Smoking. Everyone knows (even those few die hards who talk about exhaust fumes or 'my Granny smoked 300 a day from the age of three and lived to be a hundred and fifty' etc etc) that smoking IS harmful to the smoker, and that it probably has implications for the passive smoker too. Choosing to smoke IS maladaptive, because it is counterproductive to the individual and/or (increasingly becoming so) has negative implications in the wider social context. Now I'd be the last to tell smokers not to smoke (did it for a good thirty years myself!), but neither would I argue that it's not maladaptive to smoke, and that the only reason it's seen as maladaptive is because that's how non-smokers view it.

 

L&P

 

BD

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If you read again Baddad, the Panda did adapt to its enviroment by changing its diet: it eats bamboo and if it didn't it would die, but bamboo itself is not a very good source of nutrition.

 

The Panda was given a choice between a bad or worse situation, both are maladaptive even if one is better than the other and you have to apply a value judgement as to which is the bad or the worse- eating bamboo or hunting. The Panda had to opt for a maladaptive solution no matter what and if we don't have the faculty to objectively decide which would have been the better choice, than neither does the Panda.

 

Autistic people often find themselves in the same position: having to choose between bad or worse and not knowing which is which and no one can tell them without making a value judgement(abortion is another area where a choice between bad or worse has to be made, no one knows which is which and a value judgment has to be made).

 

If the Panda chooses the least maladaptive response successfully, does that make it adaptive?

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Hi lucas - quickie, 'cos I have to go out, so if i missed anything else in your post please forgive, but the panda hasn't adapted...

 

Thousands (millions?) of years ago it did - to eat bamboo, which was plentiful then... not the wisest choice, given bamboos dubious nutritional/digestive qualities, but like the Koala/Eucalyptus, a viable one given the availability of bamboo. More recently, the environment has changed, and it is these changes that the panda hasn't adapted to. So the environment isn't 'maladaptive' to the panda, the panda is 'non-adaptive' to the evolving environment.

The panda would have been maladaptive if it had evolved to eat bamboo when it was ALREADY in short supply in the environment, but it didn't so it isn't (?) :wacko::lol:

 

L&P

BD

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Wikipedia wasn't very specific, but I have read on books that Pandas only recently(less then a thousand years, possibly just a few centuries) started eating bamboo which is why their stomachs are very poorly developed to digest it.

 

Whilst I Panda could always eat bamboo, it was never a prefered food and they can just thrive on it, they were supposed to eat meat which has now been put in short supply through loss of habitat.

 

If Pandas were choosing to eat bamboo when other food is readily available but they decide not to go look for it because they're lazy, then that is maladaptive but I don't think that is the case. The Panda is being given a choice of bad or worse. It can choose to hunt and possibly starve if hunting fails or it can just eat the bamboo which is in greater supply.

 

Anyway, this was all supposed to be analogous to adaptive/maladaptive features in Autism, for which there are none I know of.

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And tonight, on Wildlife On One - The Panda: Daft or wot??

 

I think you're right, Lucas, wandered off topic a bit (you started it though :lol::lol: )

 

Getting the thread back on track...

 

Autism is NOT an Illness (or is it?)...

 

General opinion - no, definitely not.

 

Is it a 'disorder'? If disorder can be defined as exhibiting some maladaptive features, then yes, Baddad thinks autism can be defined in this way, while Lucas thinks not...

qualifying that, I also think some 'neurotypical' behaviours can be defined as maladaptive...

I also think that maladaptive features of EITHER 'group' often crossover, but in broadest terms there are particular maladaptive features that are MORE prevelant in one group or the other...

 

Why does the distinction matter? It shouldn't, but until the social implications can be changed through greater tolerance/better understanding, it does. In my opinion, the suggestion that ALL of the problems autistic people face occur purely as a result of social responses to the condition is disempowering, and also places an emphasis on the non-autistic population as a 'cause'... Everyone agrees that the '70's concept of 'refrigerator mothers' was completely flawed, and i believe the same is true for the concept of a 'refrigerator neurotypical society'...

Hope that recap puts things back on track, and thanks Lucas for the heads up... that said, I hope you enjoyed the diversion as much as i did ;):lol::lol:

 

L&P

 

BD :D

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Next time I'll try to use an example derived from important facts about Chuck Norris.

 

Chuck Norris needs a stunt-double in scenes where he has to cry.

 

Chuck Norris roundhouse-kicked a horse in the face and that's how giraffes were made.

 

The theory of evolution is wrong, just a list of all the creatures that Chuck Norris allows to live is survival of the fittest.

 

Underneath his beard is another fist, Chuck Norris has no chin.

 

They got the name for Brokeback Mountain from looking at the pile of dead ninjas in Chuck Norris' yard.

 

The credits at the end of Delta Force(starring Chuck Norris) aren't the people who made the film; that's the list of fatalities.

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