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ruennsheng
Lions Fan!
Joined: Feb 05, 2009
Age: 19
Posts: 1028
Location: Singapore
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 Posted: Wed Nov 04, 2009 11:08 pm Post subject: |
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In this case, I really hope that
(1) Autism Speaks will really allow us autistics to advocate for ourselves there
(2) We respect people who support the archaic organization, and;
(3) On the meanwhile, we also understand some people's stand against Autism Speaks because it still doesn't speak on our behalf by depriving us.
And personally, I also think that an organisation is not worth suporting if it claims to help people but it did not really allow those people who are functioning better to speak for themselves!
This is why even though I am still the competent writer I was at Helium.com, when I realised the shortcomings of Autism Speaks, I just simply stopped giving money to it and its related organizations on the website even though I still have the urge to write, as well as... still being inspired to write. Yes, I will never change my stand unless they change theirs, though I still respect people who still support that organization and I support them --- because this is what they think --- the organization is helping them!
Don't worry Jerry, no matter how different our viewpoints are and no matter what people say, you have all the rights to support Autism Speaks. 
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Maggiedoll
Loon
Joined: Jun 05, 2009
Age: 25
Posts: 1663
Location: Maryland
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| Posted: Thu Nov 05, 2009 8:33 pm Post subject: |
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| JerryHatake wrote: | | I am not a troll for your information. So accusing me of trolling is not nice to say when I have the right to speak my mind on this issue. |
In what way is referring to a peaceful protest as terrorism NOT trolling?
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Envy, is admiration in denial. --DaWalker
How to Starve the Trolls/Ignore the Meanies: http://www.wrongplanet.net/postp688875.html#688875
It's not a listening problem, it's a processing problem! |
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alex
Developer
Joined: Jun 14, 2004
Age: 23
Posts: 6492
Location: DC Metro Area (No. VA)
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| Posted: Thu Nov 05, 2009 9:20 pm Post subject: |
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| trolling aside, i cannot understand why nonautistic people would be offended by autistic people protesting an "autism" march that doesnt actually include autistic people. |
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DaWalker
Pro Caution
Joined: Jul 12, 2009
Posts: 5103
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| Posted: Thu Nov 05, 2009 10:57 pm Post subject: |
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^ Economics  |
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Roxas_XIII
Don't Fear the Reaper
Joined: Jan 09, 2007
Age: 18
Posts: 1971
Location: Laramie, WY
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| Posted: Thu Nov 05, 2009 11:49 pm Post subject: |
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| DaWalker wrote: | | ^ Economics |
^ That and ignorance. |
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Inventor
Phoenix
Joined: Feb 16, 2007
Posts: 3540
Location: New Orleans
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| Posted: Fri Nov 06, 2009 5:00 am Post subject: |
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| Celtic_Frost wrote: | I think Inventor and JerryHatake are just trolls whose intent are to make the people of WrongPlanet angry over this bullshit.
A protest without violence won't have much effect.
ASAN should of had the protest groups bring violence against whoever was with Autism Speaks. They need it. |
A terrorist point of view incited by ASAN on Wrong Planet.
ASAN does not like those Superior Asperger's Types who think and ask questions, they are looking for the lower functioning and gullable who will act on their propaganda.
Inciting one act of violence is all it takes to become a terrorist organization.
Ari's Stalker Autie Network. Nothing about us without us, says this would all go away if Ari had a seat on the Autism Speaks Board, and a fat paycheck.
Using the threat of violence, disruption, accidents, to gain something of value, Extortion.
Autism Speaks was created to raise awareness of autism, and funds to research everything about it.
It was never a service organization, helping the autistic.
It's sole purpose is to raise money for research.
They are not a Science organization, they do not pick the research.
They do not make National Policy, that is a government function, National Institute of Mental Health.
They have nothing to do with the DSM, that is done by leading workers in the field.
They have nothing to do with direct services to the autistic, that is Social Security and State Disability Services.
Their function is very limited, raise awareness, which has happened, and raise funds, which has happened.
They are not a stand alone group, their grants provide part of the funding for projects related in some way to autism. Genetic research, Neuroscience, which are proposed by leading researchers, peer reviewed, and when funded, run by the best research groups we have.
Their role is public education, and bringing in the funds to speed up work in this sector.
They are a non-profit corporation, after expenses, the rest is donated to Science.
Their expense/donation ratio is about ordinary for non-profits.
Most of the money has come from corporations and the rich.
Most of the public education has gone to parents, teachers, and the smaller donars who might only put a puzzel ribbon on the car, join in a walk, who are all just ordinary Americans adding their support to continued research.
These are the people who have been targeted by ASAN stalkers. These are the people who there are now calls for violence against.
So Ari wants to get his beak wet? He will send groups of weird autie stalkers out for confrontation politics?
These are ordinary Americans gathering to show support for scientific research.
There is the Autism you do not see, those who will spend their lives in assisted living. It is not a good thing. It is very expensive, and the main focus of all autism research.
Many others only live in the world due to the support of parents, who will not last forever.
Others can live alone with economic and social services support.
Some do get an education and work. As danielismyname points out, they are a small minority.
Since this last group is the one that interacts with the public, they are the ones who will feel the backlash from street gang activity.
Beyond autism as a disability, there is a very large group, BAP, Broader Autism Phenotype, who have the traits, yet function in the world.
This is the group that ASAN rejects as Superior Asperger's Types. The general public still sees them as autistic. This is the group that will not get jobs if autism becomes known for stalking, extortion, terror, employers will not take the risk.
Autism Speaks says they are not the "real autism." ASAN is not for "Superior Asperger Types".
We are the ones who are out in the world, getting an education, working, trying to live a normal life. We still call Wrong Planet home.
I was always different, but got known for my education and my skills. After Rainman came out people kept asking me how to win the lottery, I told them don't play. They insisted, like if I knew I would not? If you buy all the tickets you will lose half, for the state takes the rest, and your winnings will be taxed half, so you get one quarter back. The public is not very bright.
This same public will latch on to autistics are stalkers, terrorists, and those of us out in the world wil pay the price for the acts of a few.
Who gains?
Autism Speaks has been trying to discredit Asperger's Types, it does not fit their economic model.
ASAN is claiming to be the "Real Autistics".
The DSM now considers us a mistake, and wants to abolish Asperger's.
Economics and ignorance.
The threat to them all is Wrong Planet. It shows autistics as people, that there is a range of autism that does not need the DSM disability model. It shows that autism reaches in to the highest levels of science. It is information and support, and community self controlled.
We are knowledge based, learn from the books of Temple Grandin, Tony Attwood, read the research on autism, and dare to disagree with it. New models are proposed, the Markrams Intense World view, that it is hard wired Neurology, not Psychology.
It is common enough that the Autism Speaks search for a cure is being shown impossible. Their own funding has shown they are on the wrong path.
It is not something to be cured. It is broadly based in the population.
Neurology overrules Psychology, it is not something to treat as a mental illness.
All it needs is education, how are we different? How can we make that work for us?
If ASAN is not on the Autism Speaks payroll, they should be, for they come here and attack Temple Grandin, Tony Attwood, carolg, and their message is, you and everyone you know are wrong.
Superior Asperger Types are the problem, autie terror attacks are the answer?
ASAN attacks those who seek understanding of autism. They have added nothing to the content of Wrong Planet but press releases. They are bringing attention to Autism Speaks as that poor organization who is being attacked in the streets by deranged Wrong Planet members.
ASAN seems to know nothing of autism, lacks a personal view, and just attacks in all directions.
They are out to discredit the broad base of knowledge that has been gathered, Temple Grandin, Tony Attwood, spouses of aspies, the science of the Markrams, Superior Asperger Types, and replace it with violence in the streets, newspaper headlines, the six o'clock news, about deranged stalkers attacking a autism walk of housewives and little old ladies.
Only Autism Speaks could benefit from this.
It is a classic Agent Provocatour tactic.
ASAN rises just as donations to Autism Speaks fall.
Autism Speaks was taking in twenty million, spending half on themselves, and when donations fall by half or more, they have to do something.
Wrong Planet is the largest anti cure group. The recession has not slowed their growth. Anti cure is winning. The only thing that could change this is throwing rocks at housewives. Maybe a car bomb. Is someone planning their own 9/11?
Anti cure Asperger's Terrorists from Wrong Planet today launched an attack in our Nation's Capital!
That is a headline I do not want to see.
Autism Speaks is a failing non profit that will be bankrupt soon. Lots of charities are closing up.
When Autism Speaks folds, Wrong Planet will be the largest organization related to autism.
Perhaps we can do some good works. |
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Roxas_XIII
Don't Fear the Reaper
Joined: Jan 09, 2007
Age: 18
Posts: 1971
Location: Laramie, WY
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| Posted: Fri Nov 06, 2009 7:10 pm Post subject: |
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I'm sorry, maybe I dont understand your POV Inventor, but I have so much trouble believing that your accusations about ASAN are anything more than complete and utter bullshit. Perhaps your mode of thinking is way beyond mine, or maybe its the fact that you have yet to announce any kind of concrete evidence to support your claim that ASAN is a terrorist organization. At any rate, from my POV ASAN represents our viewpoint much more accurately than Autism Speaks ever will. And if Autism Speaks is going bankrupt, it means that we are finally getting the message across, that they don't speak for us. ASAN, on the other hand, their viewpoints match ours much more closely.
So go ahead, keep biting the hand that feeds you. But be warned that the American intelligence and security departments have a system that monitors forum websites, email, etc just like Wrongplanet. It keeps track of certain keywords, such as "terrorism", "bomb", etc., and can trace posts containing these words back to the poster. The more times a keyword appears, the greater priority is given to the post, and the person who posted the post. So the more times you call ASAN a terrorist organization, the greater chance there is of the men in black busting down YOUR door at three in the morning. And while it may be clear after a few hours of interrogation that you aren't a threat to national security, thus resulting in your release (if you're lucky), it would still be hilarious to me if it happened. Call it poetic justice, if you will. |
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BokeKaeru
Phoenix
Joined: Jun 23, 2008
Age: 22
Posts: 600
Location: Alternately Los Angeles, CA and Northampton, MA
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| Posted: Fri Nov 06, 2009 11:09 pm Post subject: |
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Inventor -
I haven't heard anything about the ASAN protesters being violent or otherwise acting in a terrorist fashion. If anything, I've heard that the Autism Speaks personnel have been the ones being vulgar and who have excluded autistic self-advocates from protesting (like at the Boston walk).
Besides, what do you expect people on the spectrum, be they "superior Asperger's types" or "auties," to do while Autism Speaks spreads lies about how, by our very existence, we destroy families, drain families of resources, make everyone uncomfortable and even make our parents want to kill us and/or themselves? Sitting by quietly won't help stop the spread of propaganda like this. The recession won't last forever, or even long enough to completely bankrupt Autism Speaks. Nor will a pure lack of money destroy the ideas put forth by Autism Speaks's efforts at what you for some reason see fit to call "education." What with their and their supporters' virtual hegemony over the autism discussion, even if Autism Speaks as an organization were to end tomorrow, the stereotypes and fear they've spread will not go away. Not until people who actually are on the spectrum, low AND high functioning, prove them wrong and show the world that their lives are valuable, fulfilling, and inherently harmful to no one. By protesting fundraisers such as these, autistics manage to both show people that they CAN speak and act for themselves and give Autism Speaks some much-needed criticism. The ASAN protesters are no more "terrorists" than were the people who participate(d) in other groups' struggles for equal recognition and treatment in society. |
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Inventor
Phoenix
Joined: Feb 16, 2007
Posts: 3540
Location: New Orleans
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| Posted: Sat Nov 07, 2009 4:53 am Post subject: |
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My point of view.
Autism Speaks is a private charity. To raise money they do show autism in the worst light. It is the nature of a press release to leave out the part about mild symptoms, and to focus on the worst cases.
They are not lying about the worst cases, they exist, in large numbers, take 24/7 care, and you will not see them on the streets or even in group homes.
There may be some window dressing, but the Autism Speaks talking points remain the same, give us money.
Their awareness actions are not for helping parents, autistics, but only a way of bringing people in to make a donation.
Autism walks are modeled on prior fund raising, The March of Dimes.
A non profit is a business, it's product in this case money for research, after expenses.
If someone came and said, I think my child caught autism from the cat, for they pay as much attention to me as the cat does, Autism Speaks would say, that is a brillient observation, a hot lead, and only your dollars, minus 50% for expenses, can fund the research to prove it.
Everything they say has one end, donations.
Under the laws that govern non-profits, they must pass on to research organizations, who are held to high standards, a percentage of the take, that left after expenses. My own State Law says 11% must go to the cause, the rest for fund raising expenses.
So they are an advertising agency with one cause, and they put out ads and press releases designed to bring in the most donations.
Shocking reports do motivate doners, so the worst case is pushed.
They are not going to change proven fund raising methods that produce their pay checks, because some autie complains.
They will use it, "How can we get some weird and creepy autie stalkers to show up at the autism walks, and show that even the ones who go out are strange, call for violence in the streets, for they are so bad off they are against a cure?" They would be denounced if they put some on exhibit, but what if they could get someone to do it for them?
Wrong Planet has been cutting into their message, so getting stalkers out from Wrong Planet would show
that it is not another view of autism, but a threat to public order.
We need to hire someone who can deliver a load of auties for temp work. That has been done.
Politics, the manipulation of public opinion. This is what Autism Speaks does for a living.
The demand of having the autistic included in a private organization is absurd. Demanding that the fund raiser for research that brings in $20,000,000, be give to the autistic is beyond dumb, they can't even hold a mailroom job, but want to direct a national organization?
So autie stalkers demanding total control of a Private Business? There is only one word for that, Retards. One more step to violent retards.
Brought to you by ASAN, supplying all your autie needs on contract.
Their other organization, Neurodiversity, is demanding that The National Institute of Mental Health be turned over to the inmates at mental hospitals.
Only your donations can fund the research that will lead to a cure, or at least better security to control these dangerous people.
Autism Speaks will now have to have higher expenses, hire security, due to attacks from Wrong Planet.
It is all politics, starting a war in the streets improves Autism Speaks message, free press.
A while back a murderer on the run posted once on Wrong Planet. When he was arrested the headline was, "Wrong Planet member arrested in murder." Someone with press release abilities is watching, I do not know how one post on Wrong Planet was traced to the murderer, but it was the headline.
Autism Speaks message, autism is horrrible, Wrong Planet message, living with autism.
Protesting fund raising, going to research bodies demanding social services, makes autistics look like retards. Wrong office, you want social services, lobby their funding sources for accomidation.
Someone has the press machine, the spin factory, and someone from out of the blue is now lobbying on our behalf? Someone is delivering auties to autism walks?
Non profits cannot keep the money, it is spent on expenses the rest passed on to the cause every year. Autism Speaks had a $10,000,000 overhead. Most came from corporate donations, the rich, taking an allowable tax deduction. Those have dried up.
Autism Speaks still has a $10,000,000 overhead, I do not think 2009 donations will be enough to keep the doors open. They are in real need of some big press issue to bring in the small donations, like those from the autism walks.
The combination of politics, economics, and people desperate to keep thier jobs, leads to plans like the one being run.
ASAN is run by children, they do not speak for me. All they have done is use Wrong Planet to post attacks on leading figures in the field, and their press releases. They came from nowhere, added nothing, and claim to be in charge. All five of them.
I live in a world of politics, economics, so I ask, Why? The why here is obvious.
Wrong Planet is being gamed, and if you play someone else's game, you lose.
Wrong Planet has shown that the autistic do have lives, are intelligent and helpful people, lets stick to what works.
Wrong Planet is the largest information and mutual aid community and growing.
We want those people who take autism walks to come here, we want the broadest view of autism, from those who will need lifetime care, to those who will excel in Art, Music, Science, Engineering, for it is all one thing, and the only path is understanding.
Avoid those who would play, lets you and him fight. |
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Roxas_XIII
Don't Fear the Reaper
Joined: Jan 09, 2007
Age: 18
Posts: 1971
Location: Laramie, WY
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| Posted: Sat Nov 07, 2009 5:52 pm Post subject: |
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The more I listen, the more disgusted I become. Forget this sh**. I'm done. No more.
I'm not going to argue this point, Inventor, not becuase I concede, but because any further counterpoint on my part will fall on deaf ears.
I do not concede to your point. I am simply agreeing to disagree because I'm tired of this bullshit. So don't you dare consider this a victory for your argument, cause I do not support it. I'm just tired of opposing it. |
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BokeKaeru
Phoenix
Joined: Jun 23, 2008
Age: 22
Posts: 600
Location: Alternately Los Angeles, CA and Northampton, MA
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| Posted: Sun Nov 08, 2009 1:27 am Post subject: |
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Just because Autism Speaks's objective is to make money doesn't mean any means to that end that they employ are justified. In fact, that makes their tactics even more nauseating, if they don't even have to believe the truth of the harmful messages they are spreading. Yes, severe cases of autism do exist. However, portraying even them as burdens on society and their loved ones in the way that they do is despicable, opportunistic and unethically dehumanizing. Even if these people were trying to raise funds to combat an actually deadly condition like cancer or heart disease that needs a cure, their means of spreading "awareness" would be unjustifiable. If they're actually spreading lies that they know are lies for the purpose of fundraising, that's even worse. No matter how much money is at stake for their research (and unbelievably high salaries), that does not give them a free pass to step on as many people as it takes to reach their goal. If they get opposition for how they're conducting themselves, they've brought it down on their own heads, and they don't get immunity from criticism just because they're doing what's best for the bottom line.
How is someone a "retard" for calling an organization called Autism Speaks on its bullshit for not having any autistics to speak as part of their organization? Even Down Syndrome charities include people who actually have Down Syndrome. Whatever their true function, Autism Speaks present itself as, and is seen as, the face of autism and autism awareness in the U.S. Up till recently, when autism and neurodiversity advocates have actually been making themselves heard, this has effectively prevented the very people who have the most to gain and lose in this situation - the autistics - from having any voice in this. Because of the way Autism Speaks represents itself to the world and how it has benefited from that representation, this is at very least irresponsible and probably straight-up unethical.
I reiterate - ASAN and others who have stood against Autism Speaks have not been violent. I don't know why you keep going back to the whole idea of autistic "stalkers" and "terrorists" murdering people in the streets, because it hasn't happened, and in all probability won't. If anything, the protesters have handled themselves well, while the Autism Speaks personnel have at times forced peaceful protests to disband.
It's all well and good that Wrong Planet exists, but it simply doesn't have the visibility, if we're all just to sit behind our computers and rant, in order to combat the lies, stereotypes and overall damaging propaganda that Autism Speaks is spreading. In order to assert ourselves in the autism dialogue, autistics will need more than an online presence. The public needs to see we exist as real people, not just screennames, in order to take us seriously. ASAN doesn't like how Autism Speaks represents them, and thus does something about it. Similarly, if you don't think one or both of them speak for you, you can do something about it and speak for yourself instead of throwing around words like "terrorist" and "stalker" on the internet. One thing that can actually be said for ASAN, if nothing else, is that they, at least, would support you speaking for yourself. |
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NEWanderer
Yellow-bellied Woodpecker
Joined: Dec 30, 2008
Age: 31
Posts: 51
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| Posted: Sun Nov 08, 2009 3:17 am Post subject: |
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| Inventor wrote: | Autism Speaks has done some great work. If you want to look at how much they are paid, look at the Red Cross.
They are fund raisers, not researchers, and the money they send for research is spent by peer reviewed science, to further knowledge. |
And that it has done. Their commissioned research tends to have a pretty narrow focus for chemicals found in so many cell types. Good science does not necessarily amount to good medicine.
| Inventor wrote: |
Genetics study has only shown that autism is not a simple thing. So no extirmination. It has advanced a greater across the board peer reviewed body of science about genetics, that will be useful for many things. |
Research from the Autism Research Centre already resulted in interest as a biomarker for abortion, which was certainly not the intention of the authors. It was chemistry, not nucleotide sequences per se. Research across the pond has involved pretty comprehensive phenotyping, which is good.
| Inventor wrote: |
Neurology study has had a rapid payback, not for autism, but brain trama is much better understood and treated, and our troops in the field are getting better care because of it, auto accidents. The days of, "It is just a mild concussion take an asprin," are over, rapid treatment saves lives.
Vaccines? Maybe they did push for and fund studies, which showed Vaccines are safe.
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Now if they would quit wasting time and resources of the feds with their Area 51 type inquiries.
| Inventor wrote: |
Autism Speaks has directed tens of millions toward research that they do not control, real science that helps everyone. In the adult world it is results that count.
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I don't think you can ever it helped everyone. Do we have any way of measuring help? I think help depends on the individual's priorities.
| Inventor wrote: |
So Autism Speaks spends half on fund raising? The non profit cutoff is 89%, and 11% donated to the cause. 50% is good numbers.
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| Inventor wrote: |
ASANs attacks on the one group that has brought in and spent tens of millions to gain a greater understanding of autism, through well funded peer reviewed science, are a hate crime against all autistic people, their families, and they are just rude street trash.
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There will aways be protests if autistic people are not involved in decision-making. Efforts might best be directed towards the general public where the inquiring minds are. Show don't tell perhaps. |
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Inventor
Phoenix
Joined: Feb 16, 2007
Posts: 3540
Location: New Orleans
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| Posted: Sun Nov 08, 2009 9:39 am Post subject: |
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| BokeKaeru wrote: | Just because Autism Speaks's objective is to make money doesn't mean any means to that end that they employ are justified. In fact, that makes their tactics even more nauseating, if they don't even have to believe the truth of the harmful messages they are spreading. Yes, severe cases of autism do exist. However, portraying even them as burdens on society and their loved ones in the way that they do is despicable, opportunistic and unethically dehumanizing. Even if these people were trying to raise funds to combat an actually deadly condition like cancer or heart disease that needs a cure, their means of spreading "awareness" would be unjustifiable. If they're actually spreading lies that they know are lies for the purpose of fundraising, that's even worse. No matter how much money is at stake for their research (and unbelievably high salaries), that does not give them a free pass to step on as many people as it takes to reach their goal. If they get opposition for how they're conducting themselves, they've brought it down on their own heads, and they don't get immunity from criticism just because they're doing what's best for the bottom line.
How is someone a "retard" for calling an organization called Autism Speaks on its bullshit for not having any autistics to speak as part of their organization? Even Down Syndrome charities include people who actually have Down Syndrome. Whatever their true function, Autism Speaks present itself as, and is seen as, the face of autism and autism awareness in the U.S. Up till recently, when autism and neurodiversity advocates have actually been making themselves heard, this has effectively prevented the very people who have the most to gain and lose in this situation - the autistics - from having any voice in this. Because of the way Autism Speaks represents itself to the world and how it has benefited from that representation, this is at very least irresponsible and probably straight-up unethical.
I reiterate - ASAN and others who have stood against Autism Speaks have not been violent. I don't know why you keep going back to the whole idea of autistic "stalkers" and "terrorists" murdering people in the streets, because it hasn't happened, and in all probability won't. If anything, the protesters have handled themselves well, while the Autism Speaks personnel have at times forced peaceful protests to disband.
It's all well and good that Wrong Planet exists, but it simply doesn't have the visibility, if we're all just to sit behind our computers and rant, in order to combat the lies, stereotypes and overall damaging propaganda that Autism Speaks is spreading. In order to assert ourselves in the autism dialogue, autistics will need more than an online presence. The public needs to see we exist as real people, not just screennames, in order to take us seriously. ASAN doesn't like how Autism Speaks represents them, and thus does something about it. Similarly, if you don't think one or both of them speak for you, you can do something about it and speak for yourself instead of throwing around words like "terrorist" and "stalker" on the internet. One thing that can actually be said for ASAN, if nothing else, is that they, at least, would support you speaking for yourself. |
I am speaking for myself.
Autism Speaks is focused on the low functioning, who are the majority, and who will never live independantly. They will live out their lives mostly behind locked doors, a lesser number in group homes, and the social, emotional, and economic cost are high.
Autism Speaks and ASAN have said they are not representing the Asperger's, HFA, a small minority in autism.
So tell some guy who is forty, wears a diaper, does not speak, cannot dress himself, and just sits and rocks all day, that he shouild be represented better. You will get no answer.
This person exists in large numbers, and I am not being despicable, opportunistic and unethically dehumanizing in describing them.
Hard numbers have been hard to come by, I can not say what percentage of homes for the disabled are inhabited by autistics. I think it fairly large.
Of all autistics, the Asperger, HFA are a small percentage, and only included because they share in some traits with the autistic. Some have said simular, but another condition, but that is an unknown due to lack of research.
They are vastly different, in that they can function normally, except in a narrow range. They lack social skills and have special interests. Most of these develop more social skills, and just live in the world.
They are another group, need other forms of support, are classed different in the DSM, and grade from more autistic to much less, and fully function in the world, and some even do well.
The larger group here are the ones that do not meet the diagnostic criteria, impairments in three areas to a disabling degree.
Many have only one, but it is still a major problem. They could not be called Asperger's, HFA, but the condition is none the less very real.
Autism Speaks says they are not talking about Asperger's, ASAN stated they did not represent "Superior Asperger Types."
That is fine with me. Autism Speaks has the locked wards to show, they are real, ASAN has nothing, and tries to deny Asperger Types, while trying to get them to protest, a conflict of thought there.
Who does represent those who have minor but life troubling autism like symptoms?
Temple Grandin, Tony Attwood, who like Wrong Planet, are focused on living with autism like symptoms.
This view crosses the line outside the DSM Dx, where there are many people who just have a trace of autism, which is still a problem to be understood and dealt with.
Asperger's, HFA, may be 10% of DSM Autism, and less than that of the non DSM Broader Autism Phenotype, BAP. Geek Syndrome will never make the DSM, but it is very real.
This is why Temple Grandin and Tony Attwood enjoy large book sales. Those in locked wards do not buy books.
Broader Autism Phenotype is real, large, perhaps 10% of the population, is outside of the DSM, Social Services for the disabled, and still very real. A lot come to Wrong Planet, no Dx, self Dx, I have something going on and would like to know more.
The DSM says meets three criteria, a lot meet two, one, six at 90%, and do not rate a Dx, yet their lives are very real.
I would rather call it something else, but it does look like Autism.
So Autism Speaks is talking of those who will spend life in a diaper rocking, and ASAN wants those to take leading roles at Autism Speaks? Both denouce Asperger's, so it is not my fight.
Some few do make the DSM Dx of Asperger's, HFA. A very small fraction of Autism. Many more do not qualify, yet still have the traits, BAP. This is the mix you find on Wrong Planet. This is the group that buys the books.
Autism Speaks is not evil, they state clearly their view, Autism is a problem that only research might help. They have raised a lot of money, some even went to advancing Science, and you never know what you will get there. It has shown that vaccines are safe, and that Autism is not a single Gene like Downes or Retts. Autism may be the cause, but genetic research is an across the board raising of scientific knowledge, which helps many fields. The Human Genome Project has shown the history of the species in ways Archeaology and Anthropology never could.
I am all in favor of advancing science. Recent advances have taken Asperger'/ HFA, out of Psychology and into Neurology, it is not a disorder, it is other wiring. Genetics are now closing in on Genes only 10,000 years old, new DNA, something we thought did not happen, and that there were most likely genes added from breeding with Neanderthals.
Not one Human Genome, but several, some of which could account for autism like traits.
This could also show why some have bad reactions to Gluten, Casine, Shellfish, some nuts.
Many here have pointed out that changes in diet lead to changes in symptoms.
We are the majority not represented by the DSM, Autism Speaks, ASAN, we have no dog in the Autism Speaks-ASAN fight about people in diapers who are non verbal working there.
ASAN is Neurodiversity, and rejects Superior Asperger's Types. So if you identify as a LFA, feel free to protest how the DSM describes you.
Autism Speaks fund raising does have to be compared to adults in a diaper, but if you want to identify with that group, go ahead.
As for what they make, try living in New York and working the corporate set and the rich for donations, it costs to live there, and it costs to attend functions where you can network. Try running a national group where lots of travel is needed. Their rates match general corporate rates for the same work.
There have been no complaints about how the money for science has been spent, it was real science, and chosen by people outside of Autism Speaks.
The results of science have proven the truth of what Temple Grandin and Tony Attwood have been saying, Asperger's/HFA is much broader than anyone thought.
The results of science are showing that there are genetic and hence neurological differances in the population. Almost all of these are functional people, and knowledge and understanding will help many.
Nothing has explained adults in diapers in locked wards. There Autism Speaks has zero results.
ASAN puting auties on the street will do nothing, and has the potential for trouble. Auties are known for impulse control problems, so putting them in a confrontation situation, with lots of strangers, is not a good idea.
It may gernerate bad press, which may lead to more donations, but I find exploiting auties to be unethical. I doubt the intelligence, or motives, of the people doing this. Most of the complaints I have heard about Autism Speaks have been about videos showing autistics in a bad light, exploiting them for money, so now another group is doing the same in protest?
None of these people speak for me. What I can support they attack. Temple Grandin, Tony Attwood, The Human Genome Project, Real Science, and a non-disability view of human differances.
This is where all the progress has been, the field that has done the most good for the most people, and it is beyond, Disability, Neurodiversity, Psychology, as defined by the DSM.
It is about 10% of people in the Broader Autism Phenotype who also need information, and are the group that can make the observations that will lead scientific study, and improved lives for six hundred million people.
This is where the barely disabled can learn how others dealt with the same problems. Temple and Tony have avid readers. That it is not just you is a great discovery, and that others have gone before and will discuss the trail, a great help.
It also reaches many who would never come to the attention of the DSM level of thinking, for as Asperger said, "A little autism is needed in the Arts and Sciences."
The problem of course is the little still carries problems, that only education can deal with.
I chose to put my efforts where the greatest results will come.
I cannot change the world of adults in diapers, nor has science, psychology, but the study should continue. I would not protest the housewives and little old ladies who turn out for autism walks, I would join them.
I can put my support behind the leading writers who show a larger view of autism. Their works are popular on Wrong Planet. I support the wide view shown on Wrong planet, and I have defended Temple Grandin, Tony Attwood, carolg, Spouses of Autistics, against attacks.
I do speak for myself. I also think that Wrong Planet, Temple Grandin, Tony Attwood have the largest influance on public perceptions of autism.
Autism Speaks has one message, it is horrible, give us money.
ASANs message is everyone else is wrong, give us money.
All the others discuss living with autism, and that is where all living autists are.
I chose the direction where progress is being made. |
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CanyonWind
Phoenix
Joined: Sep 12, 2006
Posts: 1881
Location: West of the Great Divide
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| Posted: Mon Nov 09, 2009 8:48 am Post subject: |
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Some stuff is so shocking it's hard to avoid noticing.
I kinda lost count, but I think it was nine times Inventor mentioned Temple Grandin and Tony Attwood in the same sentence.
There's a subtle distinction. One prevents beatings of the innocent, the other causes them.
I bet his inbox is flooded with warnings, with all the personal attacks he's been making. Maybe he's already been banned.
Or maybe not. Maybe the moderators give him one Terms of Service exemption pass every time he promotes crimes against aspies and their children for the fun and profit of the "abused woman" industry.
_________________
They murdered boys in Mississippi. They shot Medgar in the back.
Did you say that wasn't proper? Did you march out on the track?
You were quiet, just like mice. And now you say that we're not nice.
Well thank you buddy for your advice...
-Malvina |
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starygrrl
Deinonychus
Joined: Apr 13, 2009
Posts: 326
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| Posted: Mon Nov 09, 2009 1:25 pm Post subject: |
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Okay I would like to add this in. I know a Psychiatrists who works with people with Autism Spectrum Disorders. I also researched this extensively.
Lower Functioning Autism (previously known as infintile autism) only represents .5 out of 1000 people (while the rate of of total autism spectrum disorders is between 1 in 125 and 1 in 100), this percentage has not changed. I know some here do not like to differentiate between high and low functioning. I DO, I think its damn important to differentiate for advocacy purposes, as ASD are being completely misrepresented. Why...Its effective advocacy to expose the truth. The OVERWHELMING MAJORITY of folks with ASD are categorized as PDD-NOS and are classified with normal to high intelligence, basically high functioning atypical autism. The numbers for autism only jumped after AS and PDD-NOS were included in the DSM IV. AS and PDD-NOS is not the minority...we are the OVERWHELMING MAJORITY of folks with ASD. Anybody who says otherwise has not looked into the comprehensive statistics. Its also why it is important to MAKE the distinguishment between lower functioning and higher functioning autism. The higher functioning folks (which is defined by a normal to high IQ, nothing more) are the majority of people with ASD. Not the minority. It is wrong for Autism Spectrum Disorders to be portrayed in a way that does not represent the majority of folks who have autism and grossly misrepresents the reality.
I am sorry to hit you with the facts, but that disabled low functioning only represents .5 in 1000 people in the US, while the total numbers for autism spectrum disorder is 1 in 100 to 1 in 125. Most psych professionals I know who work with ASD are very vocal, most people with ASD are in the mild to moderate category and low functioning forms (which means with mental retardation) are what is rare, the high functioning forms are VERY common, which is why the number for people with ASD is so high. PDD-NOS (the most common diagnosis) and AS are the overwhelming majority of folks people with ASD, and the severely disabled who also suffer from MR are the OVERWHELMING MINORITY.
Sorry to beat you over the head with these facts, but this is based on recent studies. AS, HFA and PDD-NOS are not rare, they are the most common forms of ASD. (By the way everything I am saying I am basing on NIMH statistics, I also know some of the leading scientists in developmental psych. I am pretty fastidious in my statistical and historic research on these matters. The rate of Autism (and autism spectrum disorders) only jumped after AS and PDD-NOS were included in the DSM-IV because there are alot more high functioning folks out there than low functioning one. Even with the new DSM they are probably going to included a Grade Scale for Autism spectrum disorder if they shift away from AS/PDD-NOS. Its a method that has been used in other medical areas). |
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