Ending the "epidemic" epidemic...

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I know I was the one talking about ambiguity. Are you really making potshots at me? Are you actually going to have a discussion? Or rather just make up stuff about what 'autistics' are like some pass at me? Sour grapes.

Are you actually, I must be misreading you, suggesting that it's not an ambiguity that you big up improvements in autism speaks' negative language that can't be independently verified and then we find out that autism speaks makes a campaign called 'hacking autism'?

Ironic that you talk about black holes as if they have no ambiguities. Maybe you need some schooling:
http://en.wikipedia.org/wiki/Black_holes#Open_questions

Many people say that it's not an autistic trait that people only look at things face value.

Bud, I have no problem with you. I'm simply trying to keep this thread from moving into arguments which are not constructive.

Hacking Autism is a wonderful program which will benefit countless autistic people. I see no reason to argue over semantics.

No one will be changing the name of Hacking Autism. That is an unrealistic goal. Let's stick to constructive and realistic goals, if we may.

I don't find the name offensive. I guess I interpret it differently. If I did find it offensive, I would overlook my feelings, because it is a very beneficial program, and a rose by any other name would smell as sweet.

An ironic statement when I remember unconstructive arguments like this:

And then you don't say where and why? Then you go on and keep filling the thread with the same statement over and over, without doing anything that presumably you argued was constructive.


This whole thread is about semantics. You started it yourself. Now you're arguing that semantics aren't important? Sorry, but am I wrong in claiming that sounds like hypocrisy?


Despite the fact that you talked on about how you managed to get one of the top people from autism speaks to change words for you before on the autism speaks website. Now you shy away because of a reason you do not give. And I am not even sure about that. I didn't see the picture of the original example.


Ipsum dixit. And, pray tell, how does one call something not constructive and realistic if it is the same kind of thing as your previous affair with the word 'epidemic'?


I don't find the word itself offensive. Did I say offensive? I was saying that it violated the same principle as epidemic did. If anything that's offensive.


Welcome to reality. But it doesn't take a genius to work out that hacking has all sorts of connotations. Hacking autism? Even more. Same with epidemic.


And a gun with the word rose written on it is still a gun. Anyways autism speaks has always claimed to help people just the same as hacking autism, so this isn't a good enough reason.

The example can be independently confirmed, a number of people were complaining about the "we can end this epidemic"slogan by Dana Marname's bio that was listed on the autism speaks website site, both on this site and AFF. It was quoted, and complained about over at AFF, almost immediately after the interview was done. It was also brought up in the Don't bash autism speaks thread, well before the epidemic part of the slogan was removed.

The Hacking Autism project as you acknowledge above is an HP project supported by autism speaks. It's been a project that has been advertised for months.

Hacking Autism is an Idiom. It has a different meaning than the two words together Hacking and Autism. It's not meant to be taken, literally and/or offensively. Perhaps this is something that can be avoided in the future, but HP started advertising the program months ago, it would not be a realistic request or expectation in any scenario for them to change the name at this point.

Just as the government is not going to change the name of an Act of congress.

This is all part of the past that remains in the future. Hopefully with greater understanding this will be improved in the future.

The problem though is, whe are just talking to Autism Speaks, HP and the government can make the final determination on whatever slogans they choose, as long as it is legal.

Autism Speaks has pushed the horror of the Autism Epidemic, sought to eradicate it, and somehow grouped ASDs PDD NOS, claiming all were the same.

Autism is a triad of impairments, that can be a disability, Classic Autism, or can be a disability such as HFA, where social communication can still be a problem, or Asperger's where getting them to shut up can be a problem. All fall under disabling conditions, but the last two do learn some social communication, or when to stop.

It was considered a childhood condition that people mostly grew out of.

Beyond the Medical long standing view, some had Autism Lite, all three traits, but milder. 30% of the population seems about right, they were called Introverts.

Autism Speaks worked off of a Sci Fi flick, about real people being replaced by pods. Gone forever without hope. My question about that film, where were the original bodies? The pods took over, what happened to the originals?

Autism is lifetime, but we do age out mostly. Very few face life in an institution.

Thank you pensive for thinking I am high functioning. As a child in the 50s, Demonic Possession was the Dx, In school I was judged too ret*d to teach, and on the path to being locked up, an IQ test was needed, where I scored ret*d, times two. For that I was tossed out in the world at thirteen. I got a job, then another, and at fifteen owned a motorcycle, and worked in a European Sports car repair shop. Eighteen it was IBM computers.

Early treatment is important, when people stop hitting you, yelling at you, telling you you are a ret*d, and will never become anything, life does get better. Getting away from my church, school, family, was the best thing that ever happened. I understand support services.

Autism Speaks brings back memories.

I was lucky, they were not around pushing psychobabble and drugs back then. This was before Psychology became a Storefront Religion. It is not a Science, not Medical, it is a Faith. I am non religious.

Autism Speaks is a Business, a Corporation, a soul less machine designed to maximise profits and never die. I have done some consulting, passed the Securities and Exchange Series 7 License test, just for education, I thought the whole system was doomed to crash. I do know a bit about business.

Your child is trapped forever and we can only help if you give us money.

That is not the truth, nowhere near the truth, it is fear based Marketing.

Autism Speaks is a web site, with an office in New York, running a charity boiler room deal. It is legal, but I do not see any progress, and the last I have heard is give us more money for the children are growing up, and need Group Homes.

No generation before did.

My point of view is adults who grew up before these religions, drug companies and charities. As children, we were just as autistic, and as adults, not the worst of the lot by far.

Autism is not going to be Cured. No Genetic Fix is possible, either to abort or repair genomes. There are no Autism Drugs, if drugs are called for the parents should take them. Children will continue to grow into adults, like all that went before, they will blend into the world.

If I had to point to one differance, it would be, for the majority, they learn in school, and most never read a book after that. Autistics are Lifetime Learners, study on their own, follow their interests, and often prepare for jobs not yet invented. Schools produce workers, even at graduate Business levels, an MBA is a worker, not an owner.

I have met a lot of autistics who developed a skill, and started their own business.

So not only do I think they are exploiting distraught parents with false claims, they are directly harming the future of the children, most who would just grow up and become something. That is why they have always blocked adult autistics from their site.

Now their first set of doners is growing up, and asking about adult programs, they want in on the money. Group Homes is the way to keep it coming in.

When the 99% spent their life looking at the back end of a horse pulling a plow, autistics were chosen for prentice boys and taught a trade. Narrow focus, persistance, perfection, and no social life, was perfect.

Few could learn all the parts of a trade, prentice boys did become Guild Masters, the rest followed a horse generation after generation, till factories could use unskilled labor. On weekends they drank, talked sports, and got in fistfights, valued Social Skills.

This went on for at least a thousand years. Autistic traits were inbred to lines that produced much, the thought people. In Ben Franklin's time all the books in print fiilled a five foot shelf, and Thomas Jefferson wrote as much. Books were only for 1% of the population. The rest followed the horse.

So what is Autism, a genetic divergence caused by at least a thousand years of selection for autistic traits needed to continue skilled trades?

Recent events, the people who developed the personal computer, Geeks, Nerds, lacking the social skill to rise in the IBM suit world, started their own business, and ate IBMs lunch, also Xerox.

So finally the horse was retired, and the factory workers sent their children to schools, where they got Degrees in Marketing, and Psychology, maybe a BA in Business. A dual Major in Basket weaving and Vollyball. They are now educated, and just look what they have done for the economy.

In the last decade they have outsourced a technology that took a thousand years to build to China, which cut off all future development here. Then they ran our first preemptive war on Iraq, handing it to Iran. Like their lifestyles, this was done on credit.

Still following the horse, thinking only of this year's crop.

Autistic thinking is not the problem.

Whether it's an idiom isn't the problem. What matters is whether it has bad connotations and lau makes the good point that it does.

Epidemic could be in itself be seen as metaphorical. An epidemic doesn't refer, in all practical situations, to something that isn't contagious. The assumption is built on the fact that 'autism' is not caused by an infective agent for which could lead to more 'cases'.

Great! A lot of sources you then give me! Can you show me? Also, why exactly does tambourine-man have to be the person to overcome this issue? It's an incoherent explanation without true sources.


And that is somehow supposed to change anything? I did find out and so did others. The word epidemic didn't lose its sting with time and Autism Speaks has used it for a long time.


I am sorry, but supposed convention by way of an excuse wont convince the jury here aghogday.


Erm, what does this have to do with anything? I am sorry but a corporation isn't the usa government. Damn, I couldn't avoid thinking biting satire there.
Anyways, Corporations have all sorts of battles over names, change names of products and so all sorts of rebranding. I doubt this is going to ruffle their feathers, if they are decent.

Why do you switch so jarringly from it's not offensive to we can't do anything about it? That is clearly inconsistent. What makes it doubly so is that people jumped up and down when apparently one of the top brass at autism speaks made it so that te word epidemic was ripped out from the site and now people are playing the impossibility game and then try and use bad anaologies.
Maybe you should actually try helping than playing an apologist's game.

Having read this I can say that you actually sound quite striking Inventor. I advise you to just tweak your paragraph size a bit. Maybe three or four sentences a paragraph?

Ugh, are we talking about idioms again?!


A Hackathon, at least the one I attended, is when a group of developers get together and spent an allotted amount of time developing applications (in this case, to aid autistic people ). This is where the phrase "Hacking Autism" comes from.

I could interpret this phrase a million different ways. I could say it meant that HP wanted to hack into our brains with axes... but it doesn't.

If you choose to be upset by something, you will be.

Hacking Autism is well established - one thread is not going to change the name, for the same reasons that our efforts will not change the name of Autism Speaks. It is a recognized trademark.

However, it was quite easy to politely inform Dana Marnane that people were offended by the quote, and it was easy for her to change it.

This organization is not hell bent on ruining the lives of autistic people. Their choice of words has been misguided. We alerted them to one such misguided effort and they changed it.

Let's not put the cart before the horse - uh oh, was than another idiom?

True.
False, I would think.

So far as I'm aware, no other hackathon has had such a slogan attached to it.

I rather suspect that HP was after an idea for their hackathon, and sadly got into contact with Autism Speaks (or maybe it was the other way round?).

As I suggested elsewhere, if Autism Speaks had any genuine understanding of autism, they would have rejected (told HP to reject) "Hacking Autism" as inappropriate.

...

Naturally, it is too late to do anything about the tagline... except to make it clear that it indicates that Autism Speaks is still pursuing its core goals: to get donations for itself.

...

In this instance, maybe some of the output of the hackathon will be of use to some autistics. I really hope so.

http://www.wrongplanet.net/postxf177883-0-15.html

October 21st

ahogday wrote:


OrangeCloud wrote:


The fact that it would be unrealistic at this point for the organization to change the "hacking autism" slogan, is no excuse, it's just a statement of reality, not something that can currently be improved.

Understanding that the slogan is offensive to some but it is not realistic to change it at this point, is acknowledgement that there are more people involved in this with opinions, than the way I might personally feel about it. It's what is required to provide an objective analysis of most anything.

I'm seeing far less potentially offensive material on Autism Speaks website (except my articles, which always manage to offend someone. Lol).

Anybody else see anything that really irks them?

Autism Speaks had several of their members speak at the Hackathon, and I was amazed by how careful they were. You can read my article series, "Communication Breakdown," on their website for more details.

After the interview, some expressed discontent over the mission statement on their website; I've also heard some folks express some heartburn about it in the past here as well.




The second sentence doesn't match what was stated in the interview regarding preventing and curing the co-occuring medical conditions of autism instead of autism the general condition.

Causes and treatment sounds okay, but the prevention and cure of autism sounds to some like the goal is to try to eliminate the disorder entirely. If they understand that some autistic people are okay with their autism and they don't want to rid the world of autism, as they stated in their interview, it could be worded differently, to match the intent of the answers in the interview.

To be blunt, Urgent Global Health Crisis, sounds like language one would use for a plague.

It's a phrase that brings up that kind of image. Not a good phrase to end a sentence that starts with the goal to bring the autism community together. Address the needs of those who struggle with the disorder would have probably been sufficient in regard to bringing the community together.

This may be a stretch, but I almost believe a large majority of the current criticism levelled at Autism Speaks is the result of this mission statement.

My interaction with both autistics and parents suggests that very few are still pinning their hopes on a cure. The cure philosophy will rapidly cease to be profitable as autism continues to explode in popular culture.

If Autism Speaks wishes to continue, they may want to consider the fact that autistic children are now growing up fully aware of their autism. Many of these individuals will go on to be highly influencial in a variety of areas.

Awareness is spreading like wildfire. Eventually, the cure philosophy will not only cease to be profitable, it will result in financial losses as other organizations take cues from popular culture and lead off in exciting new directions.

I am of the opinion that Autism Speaks would benefit from further semantic changes. No one is fooled, the cure will never come. There are countless fundraising strategies that won't leave a sour taste in people's mouths and cut short the future of this organization.

I believe some of the individuals within Autism Speaks that I've spoken to are really coming around.

"The old road is rapidly fading, so get out of the new one if you can't lend a hand, for the times they are a'changing." -Dylan.

Just my two cents.

HP has had a series of problems. Depression has set in, they were even thinking of dropping computers. Their stock price is back to May of 2005.

Hacking something in medical technology? They have a lot of people standing around, waiting, donate their time to some good press, and some tax deduction. Link up with a charity? Why not, the tech world has gone around them in the passing lane. Perhaps an app for selling Girl scout cookies.

So they show an emotional passion and involvment, now does anyone have any ideas? Anybody?

I own a good deal of HP, they made some good LaserJets, then improved them to be like the cheap stuff on the market. They ranked high in laptops, customer service, then offshored that, and left their customers with faulty Chinese goods, and Asian Tech Support. After Dell self destructed, HP followed the same path. China is blocked from just buying the American tech sector, but they seem to be renting it.

Touch Screens! Touch Screens will work!

We can make expensive tablets that show a picture of a pig, and when they touch it it says pig, and oinks! Other applications will teach them to watch sports on TV!

Staying close to home, there are the fifteen million who used to work, no one has an app for that, and they were social. So there are some who are not social, mostly do not want to be, and what is the goal?

Perhaps it is me, perhaps the writer, but what I take away from the Hackathon, is if you do not read eyes, tears, body language, status, nothing much happened. I have also read HP documentation for years, language is not their thing.

They are hired Management, who would do the same running a car company. There is a Sales and Marketing Group, who trains to show passion and commitment, they believe in their products, and then there is Engineering who has to produce designs that meet the needs of Accountants, Management Ideas, Read Dilbert, and the People's Liberation Army who actually runs production.

Dilbert calls them Vendors.

So they have a Customer, one that has tried drugs, on other people, Psychology, Psych Warfare to scare them stright, then Genetics because it sounds scientific, white lab coats and all. When nothing worked, someone said, "I know! Technology!"

So now we have a meeting, with lots of ceramony, between Marketing, and Marketing, both showing Passion and Commitment, as Marketing does.

Marketing is not allowed to talk to Engineering, it not only gives them headachs, but those Engineers know they will fidget with anything, so leave charged capasitors on the table. It works just like Pavlov said.

So Management will draft a note to an Assistant, that is to be made into a Management Directive by a Secretary, who generally passes it on to the Tech Writers, who also write product documentation, to be forwarded to the Engineers. The Engineers will try their best to understand how the company plans on leveraging a buzz word or ten into a new vision. What that has to do with hardware evades them. But as Wally says, I get paid for doing this. This is a sound idea, we need a new coffee machine.

Engineering will submit a proposal, besides the new coffee machine we need a dozen autistics in cages, a zoo keeper, and legal immunity. Unlike Psychology, Engineering has Ethics, always have a good cover story.

Then there is always the problem, define what you want this product to do.

Also if Communication is the goal, why don't we put Marketing in the cages for testing? It is win win, no loss if they die, become autistic, or are cured. It is all in house, they did sign that Employment Agreement, are Organ Doners, this could work. Wally actually works on this one, he has a passion and commitment, designs based on cattle prods, to teach Marketing to speak sense and listen, or else.

This gets kicked upstairs, floor at a time, which is what everyone does, till it lands at Legal. They point out Marketing is covered by the Health Plan, rates would go up, so they suggest hiring Temps, Inturns, who will not be covered.

Management calls reducing headcount, The Bonus Plan, so nothing happens, and Marketing gets to explain how hard they are working on it to the Customer, and even puts out a Press Release. Wally never gets the new coffeee machine. He does order a time programed thermal device for processing liquids, which is approved by Accounting.

He also says that Alice is the best person to be the Engineering Departments lead in the team effort with Marketing to design the prototype.

From the Data Sheet, Autistics rarely speak, ignore all social interaction, live in a world of their own, are focused, persistant, so Engineering suggests they replace Management.

Just another day in Neurotypical Land.

Because you say so. I already said why you are wrong.

Could we not have real counter reasons to this rather than what amounts to fatalism?


You spoke about autism speaks as if they were a seperate organisation you were talking to originally. Now you're posting articles all over their website and you're constantly bigging them up. And now you're trying to complain that hacking isn't a word with negative connotations even though you were making such a massive deal about other words being changed on the autism speaks website.


Even worse! Of course there are some low-functioning who need treatment of some kind. You were saying that yourself when linking vids to self-harming autistics and so forth. It's us with next to nothing wrong, especially in my case because I don't need any medication or support, that shouldn't be under a 'cure' label.

Tambourine-man wrote:

This is exactly how I hope things will pan out. I really hope that the times are a'changing and it isn't just the PR that is a'changing.