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call me jaded

Autistic and Proud

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IF he is happy that is great,but no everybody is happy,I mean one thing is that someone choose to be insolated and another is that someone that is insolated because he /she had no mechanisms to cope in the social world,and for that reason is unhappy ,frustated,anxious ,maybe depressed.

This man is choosing what he wants to do,he don't seems confused and seems pretty confident is his choice and way of life,and very happy indeep and he thinks he speak for all the autistic people,what is not right as not everybody is like him.

He don't want to socialize,autistic people can't socialize properly without help

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Seems this debate, in one form or another, will go on endlessly...

The truth of it seems to be that everybody is right, and everybody is wrong. ASD's are so complex and diverse that there can be no absolutes, and it's as important for the 'curebies' to realise that not everyone needs a cure, or intervention etc as it is for the activists to realise that their experience of autism is not a universal one and that interventions are a must for some people. Of course, I 100% agree that interventions should be 'autism friendly', and that they should be for the benefit of the autistic person rather than for the sake of conformity - but that leaves massive grey areas that can be exploited by those on either side of the debate...

Early in the thread, I know, but having seen how these things sometimes go I'm all for playing the 'tolerance' and 'agree to differ' cards already!

L&P

BD :D

 

Oh - Amy. Sorry I didn't post earlier (broadband playing up!), but I hope you (and everyone else for that matter) had a really good Autistic Pride Day. As ever, I left it all to the last minute and then everything went crazy and i never got our T'shirts printed, but we did knock up a couple of rather nifty 'badge it' badges... Idea for next year: how about a downloadable 'badge it' template and/or Logo for home Tshirt transfers? Doesn't help with fund-raising, I know, but at least slackers like me would be making a combined impact!

L&P (again) ;)

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Inevitably and unavoidably when someone says something about themselves or someone else in reference to Autism, they are speaking about Autism and hence all Autistics.

 

This is a big problem I've had with many of the pro-cure people; they can't understand how their individual personal battles will effect others on a massive scale. We can't ignore the same dilemma ourselves.

 

There is also a problem with saying 'Autistic people can't do something unless...', it is also a blanket statement, even when made about a specific person or specific group of persons; once you say it's because of Autism you are speaking about every Autistic.

 

This is why the flawed idea of the spectrum was snapped up and extended beyond it's original purpose: it gave a degree of seperation between Autistic people to avoid the problem rather than face it. People could say that they were only talking about 'this or that group of Autistics' or 'that kind of Autistic'. This led to a divorce between ethics and science in the field of Autism.

 

It's why the most effective area which an Autistic advocate can work with is ethics. We see nothing wrong with the science of ABA, it's the ethics.

 

Speaking of ABA, mentioning adversives like electric shock and holding therapy, Amy, was a BAD idea. The ABA crowd that make up FEAT and ASAT get a real big boost when someone brings it up because adversives are no longer used as standard practice, so they can just disassociate ABA from 'bad ABA' and use the accusation as proof that ABA-Autism's opponents don't really understand it.

 

You should have made the real ethical issue clearer: the purpose of ABA to make a person 'indistinguishable from their peers' and the teaching of skills to the detriment of the natural Autistic learning which is present but ignored(pointing out that Lovaas and others repeatedly failed to identify self-stimulation as learning is something that really embaresses them).

 

You should also check sources more carefully. Michelle Dawson read the article and told me that Lovaas never actually endorsed holding therapy(news to me too). He actually cracked off an often misquoted joke about how he was getting a lot of stick in 1989 for his use of adversives which got them banned in California, yet Psycho-analysists were pushing the obviously adversive holding therapy without problem until sometime in the mid-90s.

 

The journalist was able to add material to the article without scrutiny of his sources either. It is said that those who started the Neurodiversity movement were Aspie/HFAs in the early 90s. Even looking at it from that point of view, it is factually wrong. I'd very much like to know where the journalist recieved that information from.

 

The article leans more towards the cure side because of some of the glaring errors. Amy Harmon's NY Time article in contrast was so factually accurate it infuriated Schafer and co because they couldn't fight something so robust or manage to twist it's meaning.

 

But the New Science one plays into the hands of them others, saying that those able enough to speak for themselves have no right to speak for themselves and trying to excuse it by dumping a false idea of seperation between Autistics that 'can' and those who 'can't '.

 

And I am adamant: The spectrum does not exist.

 

It's just like 1984:

 

The people were taught an apathy which alienated them from an interest in themselves and current events. This meant they could be made to tolerate the most outrageous of demands because they never truly understood the magnitude of what was asked of them.

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Lucas, we spoke for hours and hours to Bijal, we talked about almost every issue we possibly could, we had no control over what they chose to focus on. Bijal actually interviewed us in the AFF chatroom and spoke to another member who was there too, she came back a few times in addition.

 

They decided to put in the article the things that they must have felt were most relevant/interesting.

 

Baddad we do have a logo to print off for people to make their own t-shirts at home, its in the library section of AFF.

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Ah, the pitfalls of a journalistic interview. You will notice that on TV when a person is being interviewed, a journalist will ask a variety of questions to get the person talking about a broad range of things. The journalist can then be as selective with emphasis as they want.

 

Those who are media savvy like Fathers4Justice, NSPPC, Greenpeace and others who know they rely on a certain representation from the media will actually often repeat themselves for the purpose of actually having control of where the emphasis in their published views. If I want a journalist to write about what is wrong with the French, I will steer every question on a broad range of subjects round to the French and be as specific and repetitive as possible.

 

http://www.cbc.ca/checkup/archive/2005/050619CC.ram

 

Here is a link to a Canadian radio show where the presenter is talking about wether the Supreme Court should make decisions affecting public policy and listening to people phoning in. The Auton decision is very relevent to this subject. Michelle Dawson rang in and you can listen if you fast forward to one hour 28 minutes. She was asked if she thinks the Supreme Court should decide policy, but she took control of the conversation and focused on the issue she thought was important and did not deviate from it.

 

She could have brought up something related and relevant, but she knew the emphasis could have been changed by the presenter if she did. Staying on the narrow when speaking to journalists is so important. Then you decide what is relevent and interesting, because they have a deadline to meet and have to print something. If you have only said the one thing you want most to be heard, they have less choice.

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I related to this article myself, communicating with others is what causes me so many problems, trying to "normalise" asd will lead to mental illness instead of just accepting people for who they are.

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Yes, the trouble iwth this message though is that many parents have children who are destructive or unable to do a lot of things themselves. They see Autism as the absolute primary cause and feel that not intervening in it wil jeopodise their children's future.

 

To actually get a clear view of the issue though, you must look at it from the view of the Social Disability Model, not the Medical Disability Model. The Social Model puts forth this idea:

 

It distinguishes between a Disability and an Impairment. A person is disabled when they encounter a barrier to prevent them from doing something they intend. A person is Impaired when an aspect of themselves restricts their function.

 

Everyone is impaired to a degree: we don't have wings, so we can't fly. A person is disabled when anything is a barrier; a person discriminated against for their religion or colour is disabled, but the reason for their exclusion isn't an impairment. You can be disabled but not impaired, just as you can be impaired but not disabled. A vegetarian is impaired by their refusal to eat meat, but they are not disabled because they do not want to eat meat.

 

With Autism, the disability is obvious, but the impairment is not identified(though I think I have pretty much hit it with the Sensory Rubik Cube thing). No one can say Autism is to blame for anything because the impairment is unknown. Remove the disability however and it becomes a lot easier to see.

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I can only speak here as a Mum to two boys with a dx of ASD. I do not seek a cure because I do not think that there is one and I also love my sons as they are. I do however wish to make their lives as 'easy' as I can for them. If that means some kind of intervention (although I personally hate that word as much as I hate functioning) to help them to live as comfortably as possible within their own skins in this intolerant world, then I am willing to look at intervention.

 

There can be no blanket approach here because we all have such very different children and adults with so many very different needs. I am fortunate that my two are quite able. I agree with Lucas about Disability and an Impairment and I feel that where my two are concerned it is more the Impairment that stops them from doing things then any disability. You can not remove the barrier to an impairment.

 

What I do not want is for my sons to to be ashamed of their autism. When society is so pro cure then it gives out a message to anyone with a disability that they are faulty goods and not wanted. I think that this is dreadful and I do not want my children seeing themselves as this. So yes I want my two to be Autistic and Proud and that is what I strive for, to give them both a sense of self worth.

 

Maybe I would not be as positive if I was living the lives of some of other parents, which again leads you back to the fact that you cannot have one belief that is right.

 

Carole

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The thing is as far as being interviewed, I have no guile for that sort of thing. They ask a question and I give my honest opinion. I can't really do more than that.

 

I doubt if I have to worry though, I'm sure it would be a rare occasion to be interviewed anyway.

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Carole, the big mystery of Autism is that the impairment is not known, which is why the definition of Autism is an entirely fuzzy behavioural description. Like saying how a blind person would act, but not teling you that they can't see.

 

You may have mis-read my last post. The Impairment is the aspect of the person, the Disability is an enviroment enforced barrier.

 

As an Impairment is static but a Disability movable, an intervention on the person is the least effective means. My problem has always been that the policy of intervention deliberately opts for the minefield leading to a mirage rather than staying put and using the resources on hand to get by. An Autistic person thrives in a predictable or slow changing enviroment because their own comprehension of the world is changing so fast. If a mind is rushing and the world is too, there's nothing but a storm where you can't see more than inches in front of you.

 

Once again I must remind everyone that I do work in absolutes, we wouldn't have a universe if it's basic principles were not absolute. I don't opt for the philosophy of casually agreeing to disagree just because things will always be different, I work at why things are different. Einstein said the only absolute in the universe was change, but people take this wrong and often misquote it into a form which makes it contradictory. Autism can not be different for everyone if there were not an absolute to make it so.

 

Amy, you HAVE to do more than that. As I already said, when you talk about Autism you are talking about Autistics and what you say in print will have a huge effect on people you do not know. With just a few words you will exert more control over strangers lives than many of them have over their own. I have never spoken to a journalist despite being contacted because I know that I'm not keeping up to date with what those who disagree with me are saying fast enough. A journalist can spring a question and I will not have an adequete answer.

 

If I am asked about ABA I do not mention adversives, if asked about Secretin I do not mention that it's as 'effective as water' for treating Autism, if asked about holding therapy I do not mention that the very branch of Psycho-Analysis which it is based on was debunked forty years ago as quackery. I stick to the same issue when asked about different subjects. When it comes to Autism, all the trends suffer the exact same ethical dilemma and I answer every question with the same answer and then only that same answer will be printed.

 

Whatever I say will carry a huge amount of responsibility with it and excuses do not work. It's why many on the pro-cure side avoid open debate with certain non-aggressive advocates, because they can not claim any moral high ground from them.

 

The only journalist I want interviewing me is the journalist that is trying to avoid me. Those who chase you up are up to no good.

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I opt for the second one.

 

"Better it is to keep one mouth shut and have others only think you are an idiot, rather than open it and remove all doubt" -Confucious.

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Lucas, I'm probably reading it badly, but to me your post comes across as ###### rude...

Apologies if i'm wrong, but if not i'd ask you to have another look at my earlier thread about tolerance and agreeing to differ...

L&P

BD

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Lucas, you obviously feel very strongly about this.

 

I have two comments.

 

1.

Whatever I say will carry a huge amount of responsibility with it
I think the general public are quite smart and appreciate that journalists put spin on any story. Ask anyone if they believe what they read in the papers.

 

2. An impairment does not have to be static.

 

Ohhh, make it 3 things.

 

3. You are saying autism (removed of the sensory dysfunction) is an impairment? Surely not. Remove the sensory stuff and what you get is a visual thinker in a language-based society.

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Baddad, which post are you saying is rude? I'm having trouble understanding now.

 

Call me jaded,

 

I think the general public are quite smart and appreciate that journalists put spin on any story. Ask anyone if they believe what they read in the papers.

 

But people still buy them. The media influences how a society thinks regardless of their assumed attitudes towards it. Journalists ranked second in a poll of the most untrustworthy profession just behind politicians, but above lawyers, civil servants and estate agents. You have to see how ASBOs have been disproportionately given to young people to understand that the story of the boy who cried wolf isn't entirely accurate; they just keep on believing what they are told.

 

An impairment does not have to be static.

 

No, thye are static, it's only the definition that will change. A epileptic is not having fits all the time, but the definition of their impairment allows for them to be perfectly fine for the rest of the time.

 

You are saying autism (removed of the sensory dysfunction) is an impairment? Surely not. Remove the sensory stuff and what you get is a visual thinker in a language-based society.

 

I didn't say that or anything to that effect. I said that the impairment in Autism is unknown. When I hear parents talking of their child's difficulties, I am hearing them talking about the child's reaction to harmful stimuli, their disability created by the stimuli but not an impairment created by Autism. When I use these terms you must also take it in the context of two other things I believe:

 

1. There is no such thing as a weakness, it's simply the result of a person being in an enviroment not appropriate to their strengths. (Which is why when I hear some ex-institution worker or psychiatrist talk about how they were attacked 'unprovoked' for 'no reason' by an Autistic, I get a mental picture of Judge Judy charging a fish for riding a cycle on the road without due care and attention.)

 

2. I believe the as yet unidentified impairment in Autistics is Synestheasia which causes how stimuli is recieved to change when made to switch by certain stimuli. Whilst I use the term impairment for this because I'm using the terms of reference for the Social Model of disability, I do not hold it to mean 'weakness'. I do not believe it is a dysfunction.

 

Remove the sensory stuff and what you get is no Autistic at all. The visual thinker idea doesn't always work either, there are actually only a few visual thinking Autistics. That whole idea that all Autistics are picture thinkers was started by Temple Grandin. We often joke about how Temple Grandin can say anything and the FEAT axis just keeps it's trap shut (her influence and popularity among parents) but when someone who is actually involved in Autism research like Michelle Dawson speaks out, FEAT starts writing letters to people who have more important things to worry about.

 

Anyway, the topic is the New Science article and media representation. If I were ever to say anything to journalist, I would keep it with an issue relevent to the UK and focused on the UK(As Dawson stays with Canada). Proberley the best thing to steer it to is Tony Blair; it garuantees that what I say about him will be given priority for print. Mainly that he is the first British Prime Minister to say anything about Autism, but attack him for his token gestures and apparent lack of interest in the subject. I can link this directly to the complex cure divisions and his failure to recognise they existed when tackling the MMR issue and Special School Closures. Then there is a small chance the story will be followed on in a slant favourable to the pro-Autistic view.

 

I read books, I know this stuff.

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Lucas -

I meant the 'confuscious' quote ( I always thought it was Oscar Wilde, but you learn something every day), which, given it's position directly under Amy's about saying what she feels or not saying anything at all, seems to imply you're calling her an idiot for voicing her opinion, and (by extension) for not sharing the same opinions as you. Whatever YOUR perception of the world is, and no matter how many books you've read to form that perception it is an OPINION not a FACT. Only one person has the full answer (if SHE exist's anyway - but let's not dwell on the theological!), and until SHE choses to share that with us, agreeing to differ is the best compromise we've got... Calling someone an idiot for expressing an opinion is not a compromise, it is an insult, pure and simple...

At some point you've said that you don't talk to journalists, because you wouldn't want to take responsibilty for the damage that might be done if you're misquoted or taken out of context. Fair point, and a perfectly acceptable PERSONAL decision to make (though it might be said that you hold a rather inflated view of the importance/relevance of your own opinions). Saying nothing, however, doesn't help me to understand my son better, doesn't help my son to understand aspects of himself better, or help generally in defining a condition (social or medical) which impacts profoundly on the lives of millions. No ONE autistic person can define my son (except himself, of course) but the more who try the better picture I get, and the more tools i have to work with....

In closing, I'll say it again: apologies if I've misinterpreted the intent of your post, and apologies if anything else I've said has offended...

L&P

BD :D

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I did not call anyone an idiot.

 

And I do not talk to journalists because of the harm that can be caused, not because I don't want to be responsible for it, I don't want the damage to happen. My position is universal, not personal.

 

The NAS was previously the best Autism Society in the world because it was the quietest. Saying nothing at all is better than saying something harmful.

 

You are not arguing against anything I have actually said, just what you think I have said. Do not say anything about my views if you don't know what they are to begin with.

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You'll not convince me an impairment is static, Lucas. But I'm too hot and sleep deprived to make a decent response, and perhaps I shouldn't have posted in the first place.

 

BTW I read the confuscious (must look up how to spell that) quote in exactly the same way as baddad

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That's why the Chinese philosopher was given the Latin name Confuscious(or Confucius), because he has always been confusing.

 

One misunderstood quote of his came from:

 

"When the stables were burnt down, on returning from Court, Confucius said, "Was anyone hurt?" He did not ask about the horses "

 

It has to be taken in the context of the fact that in his time, horses were a lot more expensive than stablemen, he was placing his priority in people not money. He was unusually moral in a way that was baffling to others in his time and still is now.

 

Just because you read the quote the same way doesn't change it's meaning.

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Ahhh well. So much confusion and not a journalist in sight.

 

I do so wish there was a smilie for irony. Have a good evening Lucas.

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Lucas I feel that if I do an interview and just speak for myself and be myself naturally, put my views across and hope that they give a fair representation, then it is more likely to be positive, than negative.

 

The reason is - I am not a savant in any way, I have no great talents, I am not hugely successful, I don't have a high-flying Bill Gates job, I have not commited a crime, I'm not famous, I'm an average aspie. So is my husband.

 

In the interview I never said 'I don't want a cure because I am so talented the world would lose something'. I just want to be myself, the same as anyone, so I don't see how it could give people the impression that the only reason not to cure is that some autistics are very talented.

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Ok, I need to explain to you how our devious twisted media facists work.

 

When you read in a newspaper '...has a history of violence...'

 

That is a propaganda technique and it WORKS. A newspaper's supposed function is to inform, to provide information. In this case it is influencing a reader's view without actually giving them any information.

 

The New Scientist article can influence a person's view even if it doesn't tell them anything they don't already know.

 

I'll grab a quote:

 

Other parents are more ambivalent. "I do understand what they [AFF] are saying," says Kelly. "Autism is not a disease. And autistics do give great gifts to the world." Even so, she chose to put Sean into therapy. "I know the world and I want him to enjoy his life, which will be harder unless he has the skills to communicate."

 

The relevent part is '...I do understand what they [AFF] are saying..."

 

BAD! VERY BAD! Was she actually speaking about AFF when being interviewed? Was the journalist right to include that in brackets? The very way the article is written does make it look like you have said things which you actually haven't, but without actually twisting what you said in any way.

 

I'll grab another:

 

But Roberts and Nelson say that coaching children to repress their natural behaviour in favour of mainstream activities such as making eye contact, hugging and socialising is the wrong approach and can cause low self-esteem and depression. In a few rare cases, they say, behavioural therapy even borders on human rights abuse, incorporating electric shock treatments, forced holding and other punishments.

 

One relevent part is '...In a few rare cases...'

 

This means that the blanket overwhelming ethical issue in ABA is excluded from your position, despite what else you have said. ABA is unethical when it is a treatment for Autism(which is not a few rare cases), not when simply because of punishments. The FEAT crowd love it when people accuse ABA practitioners of this because they like pointing out how adversives are not standard ABA practice.

 

Something else '...behavioural therapy even borders on human rights abuse, incorporating electric shock treatments, forced holding and other punishments...'

 

Electric shock has not been used in behaviour modification since 1989, only for restraining disruptive patients. Holding therapy has never been used as an adversive in ABA, as I explained about Lovaas' misquoted joke. I'll be checking on the FEAT BC chat board to see them getting a big thrill from telling each other what they already know.

 

You need to understand that you are responsible for what was printed, not neccessarily what you said.

 

If I do an interview, I would ask who else is being interviewed. If someone else being interviewed has my opinion put to them so they can say their opinion on it, I want to know what it is because if it is published it will colour what I have said when it is written. If I do an interview and Lenny Schafer is interviewed too and makes a comment about something I have said while interviewed, I can pull out and then the journalist can't print what Schafer has said about my position. That means you're left with an article which doesn't have an Autistic viewpoint, but Lenny Schafer being incoherent and unlikable, which is better than what it would be if I gave final consent.

 

Have you ever wondered why newspapers use ' instead of " ?

 

A quotation mark " means it is quoting, repeating what someone said as they said it.

 

The floating apostrophe ' means they are paraphrasing, saying something similiar but may not actually reflect the position of the person being represented by it.

 

The New Science article was so good it managed to distort a picture but without smudging the paint.

Edited by Lucas

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"Electric shock has not been used in behaviour modification since 1989,"

 

I don't know why you think that. Have you heard of the Judge Rotenberg Center? They use electric shock devices as 'therapy' on those with autism regularly, there is a lot of info about it on AFF, or look into the JRC yourself.

 

You can look at each word or phrase and ponder how it appears to others, but I don't see what you see, or that it is damaging.

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Do you think maybe this discussion has run it's course??

 

Perhaps this is an 'agree to disagree' moment? :rolleyes:

 

Bid :ph34r:

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Bid, I've explained before why I do not believe in 'agree to disagree', it's more a means of avoiding a listener's discomfort than resolving issues.

 

Amy, the problem with bringing the JRC up is that an ABA parent can just say 'MY child doesn't get treatment from there!'.

 

I was also unable to find evidence of abuse at JRC, just accusation, I need a source.

 

And this is not about how you see it, it is the effects it will have. You need to do a comparison between the New Science mess and Amy Harmon's NY Times one.

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