Offer from Autism Speaks, please give your opinion

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Seriously. Don't go and do a Neville Chamberlain.

I agree, and I also think it would help to have stories from those of us that have overcome their lack of awareness to learn how to love themselves for who they are as well as how to love other people, which is a very noticable stereotype in my opinion

I preferr the "black" vs. "autism" concept myself.

When blacks were first brought to America, they were slaves, couldn't use our language, etc. Then, as time went on, they gained their freedom and learned to be more self-sufficient and we learned to be more accepting of them.

I have to disagree here, because I have seen them talk like autism was caused by demons to my face.

That's something I can agree with. Years ago I had to learn that no one can speak for me but me.

Not to mention, a pastor killed an autistic boy trying to perform an exorcism.

To person saying that this is a neutral thread; this is a thread to discuss how should respond to Autism Speaks' offer. Seeing as the way in which they present people with autism is crucial to the decisions I do not think it is at all displaced to examine just how astronomically, light years away from respecting people with autism they are.

The level of hypocrisy in our society about self-harm and dependency is both astonishing and angering. The majority of the population, if measured for "self-sufficiency" by impartial standards rather than NT/average ones, would score very badly.

People with autism are being scapegoated for both the chronic and acute forms of non-adapted and unhealthy dependency and self harm widespread/endemic in our society.

People with autism are presented as being disordered for being prone to self-harm, being dependent on others, and for sometimes showing violence.

In what way are they different from the millions of people in the west self-harming everyday with horrifically poor diet, smoking and inactivity? In what way is the " very real dependency" declared by smokers less disordered than that of autists'?

How dependent on company are many/most NTs , yet this is not declared a disorder. How many people are totally dependent on banks to "look after" their money, lend them money, etc yet this , often "crippling", dependency is not labelled a disorder. It is socially acceptable.

How dare people label those on the spectrum disordered for self-harm or dependency when almost everybody does it? Even violence to others is usually not called a disorder. It's a crime after the age of 12.

The point is that there is no reason for people on the spectrum to be labelled disordered except in so far as society believes that they can not speak for themselves to explain why or how want to live. Whereas a smoker explains that he absolutely has to smoke.

Labelling of people with autism, ignoring their needs in almost every area of life is "justified" in this society, by their being in the minority. "You need things quiet and slow, etc, well hard cheese, most people don't, and that's how we set our standard for healthy people".

Most people would rather be chemically hopped up, rushing around, creating ever more noisy environments, so be it. Apparently.

Conclusion: I think that there is a very real danger of encouraging Autism Speaks in their attitude if we present "adaptation to normal life" stories as "successes". :

Last edited by ouinon on 10 Apr 2008, 7:52 am, edited 1 time in total.

I can't speak for anyone else, but I was just imagining that perhaps people with autism register how much "normal" people self harm, how much they seem to love dependency... ... and copy them in so far as can without a car, cigarettes, money, etc.

Because "normal" people are mostly blind to the degree of self harm and dependency that they engage in they see autistic behaviours as extreme and inconvenient. As if rummaging through a bin for fag ends, or going out after most shops are shut to get fags so that will be sure of having enough for the night, isn't both inconvenient and extreme. As if "needing" a coffee , several coffees, to start the day is natural; as if having to get in the car to do 500 m is perfectly reasonable.etc etc

The idea that most normal people seem to have of "normal" life as a realm of self sufficiency/independence is quite divorced from reality/delusional. I think that if they were to understand how non-adaptive, and dependent their own behaviour is they might see the behaviours of people with autism somewhat differently.

The labelling of one set of people's insufficiencies as signs of disorder and the other set's as normal is discrimination. And "success" stories based on how well someone with autism adapts to "normal" functioning just perpetuate it.

Last edited by ouinon on 10 Apr 2008, 8:51 am, edited 1 time in total.

Notice that several posts on here seem to believe that because society is a certain way everyone should just adapt to it.

And it occurs to me that it is as absurd to think that can improve the lot of people with autism, ( or any other "disabilities") , truly include them in society as if they were not deficient or impaired, without it involving some loss of privileges on the part of the "ablebodied" as it would have been to think that women and black rights would not involve a reduction in male and white powers.

Many prominent, eminent, intelligent, men used to believe that women were incapable of understanding politics, figuring out maths equations or of becoming doctors.

And I've just remembered what Autism Speaks' attitude reminds me of; the organisations so rife in the victorian era which worked so hard , with evangelical zeal in fact, to persuade women to stop being prostitutes. They would pull them off the street, give them piece-work sewing to do, accomodation in women-only hostels and take them to church regularly. Supposedly they were being saved. But there were a "surprising" number who resented these efforts, found them demeaning. What made a difference to many of them was womens rights. Not charity, not "help" but social conditions which enabled them.

Just a reminder:

This isn't a referendum on Autism Speaks. No one is happy with the message they have been putting out there. Absolutely no one. We can all agree on that.

This discussion thread is to help determine what the best way to counter that message is. It's for weighing the pros & cons of different strategies for getting a better message out there. After reading some of the very impassioned posts here, I am even more committed than before to doing these video interviews. I do still wonder about giving the videos to that group to get them seen, though.

Some questions I am still pondering after reading all the responses are:

1. If I don't allow them to show it, am I keeping it from reaching as many people? They draw the most web traffic and the greatest attention from media and government. And more importantly, am I keeping it from reaching the people who would otherwise see nothing but "burden" and "disease" messages on Autism Speaks' site? If I'm on their site, then anyone who comes there would get to see both sides at least.

2. If I don't allow them to show it, what is the best way to reach a wide audience with it? Putting it on a site like WP is basically preaching to the choir. How do we reach the people who need to know?

3. If I do allow them to show it, how can I make sure they don't misrepresent what we're doing and why? If they do misrepresent it, what is my best recourse?

4. If I do allow them to show it, how can I make sure it isn't buried and dismissed? As much anger and distrust as the WP community has for curebies, from reading their discussion forum this week, it looks as thought they have just as much the other way. They feel attacked too. If it goes up there, I want it to help change their minds, not give them another reason to keep doing what they have been. What content do you think would help reach those parents who act out of ignorance and fear? What content will they refuse to accept? What steps should I take to make sure they actually see it at all?

5. Everyone is concerned that this will be used as a PR move without having any real effect on policy. If I allow them to show the videos, how can parlay that into pressure on them to make substantive changes? If they don't make any changes, what should I do then?

Answering questions like these can lead to correcting some of the problems. Two dozen people agreeing with each other about how much Autism Speaks is doing wrong ona website where everyone already knows how much Autism Speaks is doing wrong isn't changing anything.

I'd just like to point out, again, that that ( simply restating why don't agree with them) , is not what i was doing.

I have been trying to work out what it is about their attitude that is the most oppressive, and why, and discovered in the process that sending them videos of people with autism achieving great NT things would be buying into the whole problem, and likely to reinforce the stereotypical attitude; that NT behaviour is the goal.

Instead perhaps videos of people with severe autism behaviours accompanied by statements of how happy they are in non-NT environments, of how NTs giving up on their noise and rush contributes significantly to AS happiness and capacities.

Or send them videos of NTs engaging in various/many of their completely "normal"/socially accepted/encouraged self-harm and dependency behaviours after clips of AS behaviours. Show them just what they are asking people with AS to copy!

In fact I think that that is the most important thing to show them; how "dysfunctional", driven and obsessive, pointless and over complicated, aswell as self-harming, and profoundly dependent, many NT behaviours are:

...from caffeine and sugar coated breakfast "putting face on"/tie tie through rushhour cars school-run office coffee gab gab gab shopping lunch at desk gab gabbing on phone on foot between banks arranging next debt before coffee no 10 and yet more paper pushing gab gabbing to the rush hour cars school-run and shops and TV TV TV and first drinks and TV and takeaways salty fatty sugary and late nights zoning out sleep badly all accompanied by cigarettes coffees sugar and noise ...

Last edited by ouinon on 10 Apr 2008, 1:19 pm, edited 3 times in total.

You want a way to show " a shared human condition", to show how " the experience of living is the same"; well, rather than always showing people with AS copying/managing ( supposedly ) NT human characteristics, turn it around and show them how very very close they are in terms of drivenness, obsessive rituals, pointlessly complicated activities to achieve things, in self-harming habits , in massive , mostly denied or "excused", dependency on people/foods/organisations/objects.

Last edited by ouinon on 10 Apr 2008, 1:50 pm, edited 5 times in total.

In response to Nicholas' questions:

I think so. There are actually a lot of videos from autistics on YouTube, but a lot of AS supporters aren't really exposed to them. Having such videos on their site would be a step in the right direction, IMO.



Hmm. Getting the message into the mainstream media may be wishful thinking. For an audience of parents with "aspie" kids, the OASIS forums might be more receptive to the message. I guess one of the questions I have about this is, who are the people who need to know? Do we want to target family members, researchers, the general public, all of the above?



I'm not an expert on copyright law, but I assume that you would have the rights to materials you produce? I don't know if any legal paperwork is required. I would think that if you own the copyright, AS needs to represent the materials accurately if they want to stay legal. As to what happens if they don't do that, I don't know. Maybe you could get them to agree to some kind of binding contract?



That's a hard question. Like I said before, inclusion of adults who may be nonverbal, or who were considered "severely autistic" as children might help with that. I don't know what format you intend to present this in, but that may be an issue. I'm not sure if people are more likely to be receptive to it if it's a single documentary, as opposed to a series of shorter videos. Since you don't want to be accused of "sugar-coating", it's probably wise to present the difficulties of being on the spectrum in conjunction with the benefits and the anti-cure position. I'm not sure AS will be conducive to presenting material which explicitly criticizes them, so you might want to ask them about it. If we want to go through with it, we might have to be subversive. I guess the question is how we can be "subversive" without being the autistic equivalent of Booker T. Washington, as opposed to W.E.B. DuBois. You may want to ask your subjects what they think about portrayals of autistics in the media, how they would like society to change, how they would like to be treated. (I'm doing a research project on the spectrum this summer, and plan on asking similar questions.)



That's another hard question. I think the best thing we can do in that instance is for parents and autistics to write the organization expressing support for showing the videos, but also pressuring them to include autistics on their board and to change the way they present autism in their materials, place more of an emphasis on adult issues, research ways in which we can provide better supports and understanding for autistic people rather than focus exclusively on "cure", etc. That might not be good enough, of course, and you may want to reserve the right to pull the videos if you see fit. We should probably keep in mind that these videos probably aren't going to cause revolutionary changes. All social movements take time and effort. Hopefully, this will be one step in the right direction, though. I'm for this project because I basically think AS isn't going to listen to us as it is right now, so we might as well try giving them our materials to show on their site.

That person would be me, NewportBeachDude. I said "neutral" because the majority of these threads turn disrespectful, people calling names, being rude and throwing out the "troll" thing when they can't get the last word or someoen to bend in their direction. That's what I meant by that. You, however, have posted some very good thoughts. I may not agree, but I appreciate your presentation and have no problem with discussing this with you. I've chatted with you on the Parent's Board and think you have an interesting viewpoint.

Ultimately, I think WP should take ASpeaks up on the offer. We need more awareness for Aspergers and I've been saying that since I joined.

I'd be interested to know if they really do "draw the most web traffic".
http://www.quantcast.com/autismspeaks.org
http://www.quantcast.com/wrongplanet.net
I'm unsure what these figures really mean.
"Autism Speaks" isn't very significant, outside the US, so far.



Well, over here is the NAS. I'm pretty certain they would show the video. Also our NHS might be amenable. I would hope most countries have at least some form of national organisation.



I guess you should be able to find some help via the Creative Commons website.



That's a hard one. You can't FORCE anyone to watch.

I would say that getting together with Smelena over some production ideas would make the final product interesting/amusing enough to get them to WANT to watch.



Nothing.

I've said elsewhere that I feel that Autism Speaks can only continue with its current approach while it successfully suppresses information. I don't even think they do that in any malicious way. It's just a blinkered approach.

They were formed in the expectation of a "cure" becoming available. They have been funded by people, explicitly to search for that "cure". It's now three years on, with far less likelihood of any such "cure" being remotely possible, other than in a grossly unethical form.

Hopefully, they can adapt. If not, reality will eventually catch up with them.

It would be nice to educate them quickly.

If the organisation was formed in order to find a cure, then it was formed based on extreme ignorance of what autism is.

The majority of evidence points to it being primarily genetic (why else would it run in families, and those with A.S.D.s have higher chances of having LFA children), although it may also be exacerbated by environmental chemicals causing genetic damage, either resulting in offspring with A.S.D.s or interfering with the brain's early development in the womb/shortly after birth.

Cure implies the eradication of the symptoms of an existing condition. Seeing as A.S.D.s are caused by a genetic trait/the way a brain has already developed, by the time of of diagnosis a child's brain/nervous system has developed to the point where it's state is irreversible, without advances in neuroscience that are quite possibly 100s of years in the future (How in the hell do Autism Speaks expect to restructure a brain's wiring).

Given that that is most likely impossible within the lifetime of anyone alive today, the only other thing they could be talking about is eugenics.