Why hate Autism Speaks

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dont have autism speaks,talk to them and try to change them.alienating people from autism speaks is a serious mistake.they have a lot of power that could be used to do good if they were more informed.they are not the enemy,there just suckers who bought snake oil because there desperate.as misguided as some may be most of the parents do what theyt do because they love there kids.in todays world loving parents shouldnt be taken for granted

Yes. So to resolve these matters and end major confrontation either there needs to be a political shock to both polar extremes or to allow it to run it's course hoping for the best. I am concerned for many reasons. What folks who have the most influence do on both sides is not enable collective say so there is no enabling of a true network of diverse opinion to empower individuals. ASA is better at this diversity of opinion idea but is not a spotlight organization in the media.

What matters most is those that need help get the help needed. I feel as if at times self-advocates opposing cure are powder puffing the image of autism for preservation politics (abortion issue). It is an amazing and complex social and political pathology. I feel strongly that I do not trust that many organizations have the wisdom for a needed balance.

Neither will work together and many are to very self-centered to protect certain view point let alone respect diversity to empower it. The polar extremes seem to govern PR. It is only when diversity is empowered in premise that both sensibility and individual empowerment will arise. For many with autism it's going to take both diversity and the empowerment of the necessary understanding by means of this diversity to change lives and empower individual choices.

From one end to the other of the polar extremes either it is mellow drama, hypochondriacs or the world is ending to get attention. The Temple Grandin and ASA seem good. Yet we do not yet have a platform of universal empowerment. My solution would just be to popularize the idea of indirectly making unpopular both extremes and hope an enabling sensibility and reasonable protectionism manifests.

Even Autism Speaks is not as powerful as it seems. ASAN is hardly relevant and is not including all self-advocates but those with only certain opinions. So they are misleading in title.

These two organizations ultimately are simply distractions to true progress. People focus to much time on them and their controversies to get your attention. The I AM Autism video was to get peoples attention and did much more then they ever expected and those against Autism Speaks like ASAN helped them tremendously by giving them the attention.

I have never focused on these organizations and I am able to gain the awareness with thousands where I live with ease. They depending on the issue are mental black holes of unproductive wastes of time whose organizational models with certain issues are not effective or destine to fail. ASAN has done little and what they have done is caused more harm then the good of it. Autism Speaks has raised money for research but they are little good for anything else unless they find themselves capable enough to enable and empower others as a flagship organization.

I've studied ASAN and ASAN is based upon advocacy the past 10+ years. I've studied Autism Speaks assertive, confident and creative approach in working with the mainstream. I learn from them and evolve what I learn and add my own strategies. Others should empower themselves and in doing so empower each-other but ignore organizations that do not embrace diversity empowerment.

You will be surprised with what I do in the future, other have been surprised with what I've already achieved. I will help others be empowered but frankly I'm tired of the political horse pooh. The bull pooh slows progress and the mal-progress of adversity needs to be put in it's place. I got some words for ASAN as a self-advocate and they deserve every word of it to come when the opportunity arises for me to express it officially. Time for better approaches..

your certainly a good advocate.im not sure though if a.s and asan should be minimized that much.are you meaning ti imply that your the next profound advocacy org.not that thats a bad thing,but are you claiming to be the next alterative in advocacy

No other people need to be. I have alot of responsibility. Yet these two organizations need to evolve or get out of the way. No one should wait for Autism Speaks to become what it is not which is most things other then research or ASAN to be a diversity of opinion organization. I'm not a social networking person. I raise money to facilitate opportunity and have choice words for ASAN because their approach is embarrassing and misleading as a self-advocacy organization. Yet I believe that both ASAN and Autism Speaks are perceived more powerful then they really are on certain issues. People are wasting their time on both because unless either diversify their platforms people are looking to them to become something they are not and have no intention to become people should do it themselves.

I advise folks focus on their own local communities as the national stage is not easy to penetrate. Where I live my job is to empower others with autism and other developmental disabilities. My ethical responsibility given my job title is to when I am empowered use that empowerment to help others and I really wish others would do the same and not just to secure their own points of view such as ASAN demanding others view autism only a certain way.

well said

Autism Speaks gets it all wrong about autism spectrum. It is made of parents, activists or other folks who don't consider even high functioning, intelligent autistic or Asperger people equal to them. They look at us as inferior people who can't speak for themselves.
They would incapacitate all of us if they could or made us 'normal', means NT, like them. They're are scary IMO. They are vocal, get more media attention, b/c media are ignorant about autism. Autism Speaks can do a lot of harm to us if they are successful in their lobbying and they may manage to push for some legislation against us e.g. some government funding for cure against autism. The way that Autism Speaks Nazis portrays us may also cause some legislators think that Aspies and HFA are incapable of normal living and increase conservatorships of young ASD people.

More exaggerations, false facts and with no proof to back it up. I am really tired of the false facts. If people argue based on facts to derive emotional arguments I'd be able to believe it better. I have no membership with Autism Speaks but I cannot socialize based upon falsehoods yet people don't seem to look for the facts when it's propaganda they would like to believe but not prove and when asked to prove they get mad. Therefore I can only assume people are quick to being pissed off.

Here is where I am with Autism Speaks and any other organization saying they represent autism:

I don't hate them, nor do I love them. I don't mistrust them, nor do I trust them. I don't listen to them because I don't need them to represent me. I will serve as my own advocate of autism. Since we with autism all seem to be so different (you've seen one person with autim, and you've seen one person with autism), I take care of myself.

I cannot speak for the rest of you because I am not you, and I don't know your needs or lack of needs. Some of you might want help from autism groups. And some of you, like me, don't want help from any of these groups.

I have not researched Autism Speaks, or any other autism organization, enough to warrant an accurate judgment of their worth---and I have no desire to do so. If an agent from Autism Speaks were to call my house for whatever reason, I would tell them I have autism and that they don't represent my life with autism. I have grown very independent in life when it comes to things like organizations. I try to keep as little contact from things like this as possible. And that is my right.

A healthy mistrust better assures compliance and too much trust can lead to corruption.

American Bars - Trust & Distrust

After 911, President Bush urged the nation to donate money to the Red Cross. And as concerned Americans, we did, to the tune of hundreds of millions of dollars. I know when I donated my buck at the supermarket on every trip from 3 months I certainly thought that money was being raised to help the victims. Everyone did. That is why it all exploded when the Red Cross didn't funnel a single cent of that money to 911 families. No one had EVER said there was a specific fund to give money to the victims. President Bush never said the money would go to the vicitims. But, in this situation, under the circumstances the public assumed this was what they needed the money for - funerals, and mortgages and living expenses and possibly college funds for now orphened children.

The image of 911 was a powerful motivator for raising cash. The Red Cross KNEW why the money was coming in... and they thought they could just keep quiet and no one would notice. It took victims families who went to them looking for assistance to blow the whistle and call foul.

Autism is used to instill fear in people. And pity. I think Autism Speaks cashes in on this without delivering anything beneficial to the Autistic community. I hate to borrow a euphemism from Jesse Ventura (and whomever he took it from as well) but - Follow the money. It will clarify the agenda for you. Autism Speaks top expenditures - executives salaries. Huge amounts of money donated to a limited number of research projects with a very narrow focus. Do I KNOW their agenda - no. But the money trail suggests a lobbist like dedication to narrow interest group that is feeding on public fear - probably big pharma.

Anyone know the backgrounds of the their top execs? That will probably give some insight.

Pity is the wrong word. The word pity disvalues human compassion and seems to create bad emotions if not allowed.

I want to understand the effects of compassion when combined with fear.