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PaulaDurbin-Westby
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08 Dec 2013, 7:48 am

A dedicated effort to boycott Autism Speaks sponsors, with an *educational* component, is underway. This initiative was started by a group of concerned parents and Autistics, and is underway NOW, including a Twitter Bomb component Monday December 9. Links and more info below.

http://www.change.org/petitions/corpora ... ism-speaks

http://boycottautismspeaks.com/home.html

https://www.facebook.com/boycottautismspeaksnow

My blog posts below contain more links and some of the history of what has led up to the Twitter and boycott initiative. This all started when Autism $peaks, once again, engineered a high-level "policy summit" with no Autistics included in planning, leadership, or decisionmaking roles.

http://paulacdurbinwestbyautisticblog.b ... ummit.html

http://paulacdurbinwestbyautisticblog.b ... ntion.html

TWITTER and tumblr (and other hashtag platforms, if you want!)

Hashtag your tweets with #BoycottAutismSpeaks so we can RT and please include links to our website and petition.
On December 9 we will be tweeting to AS and their many sponsors.

Hashtag your tweets with #BoycottAutismSpeaks so we can RT and please include links to our website and petition. Example tweets:

@sproutsfm Autism Speaks does not help Autistics. End your support http://boycottautismspeaks.com/why-boycott.html

@autismspeaks You can’t silence the voices speaking for #equality and #Respect We support @Boycott_AS #boycottautismspeaks #Autism #Autistic

ASAN, AWN and several other organizations representing the disabilities community signed the following joint letter which explains why Autism Speaks is not an organization that ethical businesses should sponsor, fund raise for, or otherwise offer support.

http://autisticadvocacy.org/2013/11/201 ... sm-speaks/



aghogday
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08 Dec 2013, 9:04 am

SHAKES head..and snickers......

There are bigger fish to fry in this world..my friend..much..much..muchh...

BIGger fish.

For one thing..just in my opinion...

ASAN and AWN..simply sucks..

Unless one is part of either of those in effect..social cliques..

But that's just my [email protected]

All..my so cALLed

Christian friend....


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dkmnow
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08 Dec 2013, 12:01 pm

Excellent work, Paula! Thanks!



girl_incognito
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08 Dec 2013, 1:14 pm

Thank you Paula!

I also want to stress that we are trying to help divert funding to more local charities that actually do help.

We are compiling a list of them, it just takes some time.



Willard
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08 Dec 2013, 2:08 pm

PaulaDurbin-Westby wrote:
This all started when Autism $peaks, once again, engineered a high-level "policy summit" with no Autistics included in planning, leadership, or decisionmaking roles.



What do you expect from an organization that continually refers to autistic children as "tragic burdens" to their families and calls only for a 'cure,' rather than acceptance or understanding? Autism Speaks believes that autistic kids are subhuman and autistic adults don't exist. Their overall policy is that autistic individuals are stupid animals, far too mentally impaired to participate in any decision-making process.



janesprints
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08 Dec 2013, 3:24 pm

The very attitude you reference is the problem. And we should not be supporting, with out limited funds, organizations or corporations that say such things and support them.



girl_incognito
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08 Dec 2013, 5:32 pm

Willard wrote:
PaulaDurbin-Westby wrote:
This all started when Autism $peaks, once again, engineered a high-level "policy summit" with no Autistics included in planning, leadership, or decisionmaking roles.



What do you expect from an organization that continually refers to autistic children as "tragic burdens" to their families and calls only for a 'cure,' rather than acceptance or understanding? Autism Speaks believes that autistic kids are subhuman and autistic adults don't exist. Their overall policy is that autistic individuals are stupid animals, far too mentally impaired to participate in any decision-making process.

Or you get the opposite response which is we are too "high functioning" to be heard or advocate... Damned if you do and damned if you don't with them it seems.



aghogday
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08 Dec 2013, 6:50 pm

girl_incognito wrote:
Thank you Paula!

I also want to stress that we are trying to help divert funding to more local charities that actually do help.

We are compiling a list of them, it just takes some time.


Now that's great and where the focus needs to be..in my opinion..on all the local organizations that could really use local efforts to achieve the goals and missions they set forth already...

This effort against Autism Speaks is a total waste of time and effort in only my opinion..

As the way Suzanne Wright described Autism is already the way the public in general sees autism from the terror of stories that were first put out to the general public through spokes person's like Jenny McCarthy linking it to vaccines..or the recent Senator and Canary Party linking it to mercury in vaccines and pollution...

There IS NO POSSIBLE WAY THE GENERAL PUBLIC IS EVER GOING TO VIEW AUTISM AS A GOOD THING..IT'S JUST NOT GOING TO HAPPEN..THERE IS ALREADY A COMBATING AUTISM ACT IN EFFECT IN THE US..

IT IS DESCRIBED AS SOMETHING AS BAD AS WAR...

Now that's the entire government looking at it that way..with trillions of dollars of funding overall..

Da ya..really think a charitable non-profit organization raising about 60 M dollars a year is going to be negatively influenced by a group effort of people on the internet who are already described as not really autistic..in general by at least some of the people who directed the DSM5 effort to get rid of Asperger's Syndrome..in part because they don't see this internet described autism phenomenon as anything seemingly but 'a self-reported fraud'...

As evidenced here on this site..in the news interview of one of the representatives of the DSM5 working committee and the APA...

No of course not..in any reasonable estimation that i can see..the only thing that is happening here is name brand name brand name brand name brand...free advertisement for Autism Speaks for anyone who might see the headline here viewing this internet site...

And actually going to Autism Speaks Website..where the information is detailed on autism and presented as well as any media presentation on any website overall ...of course..because the whole organized effort was started by a President of NBC..high powered..media mogul.....

Well..yeah..i agree..efforts like the recent one that started in this forum to actually start a new effort to help people on the spectrum are this focus on local organizations..the names of the organizational efforts..and how to help and volunteer..are yes important in my estimation2...

THEY Are really effective ways to help people on the spectrum...

But seriously all this attacking on Autism Speaks..only puts Autistic people online overall in a negative light..as from the outside looking in ..it looks like the online autistic people only care about themselves and could NOT care less about all the other people on the spectrum suffering and yes even dying from autism co-morbid related conditions whether Autism Speaks is truly funding efforts in research that may actually make some of this suffering eventually go away from people...

Seriously..from the outside looking in this validates the general public's viewpoint already that autism is a serious disorder that is centered around a deficit of demonstrated human empathy for people who do not experience life quite the same way as other people...

But...go ahead..continue on with the effort if ya like..but in my opinion i'll spend my time and or effort..on my local organization that does really good things for people on the spectrum..and let autism speaks continue funding research..as there is no way my local organization could ever fund that nor do they have any expertise to get involved in it..even if they wanted to do it..and had a little extra funding.....

And yes that research could mean eventually a life or death scenario for a person on the spectrum with a co-morbid condition like the one my son head that killed him DEAD...

THIS AIN'T A GAME FOLKS..IT'S LIFE AND DEATH..'REAL LIFE STUFF.'..!


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09 Dec 2013, 11:11 am

aghogday wrote:
There are bigger fish to fry in this world..my friend..much..much..muchh...

BIGger fish.

For one thing..just in my opinion...

ASAN and AWN..simply sucks..
Autism Speaks is run without Autistics, against Autistics.
The ASAN and AWN are run by Autistics, for Autistics.

Why would any Autistic support Autism Speaks and oppose the ASAN and AWN?
Out of self hatred?


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aghogday
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09 Dec 2013, 1:14 pm

KenG wrote:
aghogday wrote:
There are bigger fish to fry in this world..my friend..much..much..muchh...

BIGger fish.

For one thing..just in my opinion...

ASAN and AWN..simply sucks..
Autism Speaks is run without Autistics, against Autistics.
The ASAN and AWN are run by Autistics, for Autistics.

Why would any Autistic support Autism Speaks and oppose the ASAN and AWN?
Out of self hatred?


FOR ONE SIMPLE REASON...

THEY EXCLUDE REAL AUTISTIC PEOPLE FROM THEIR ORGANIZATION....

SIMPLY IF THEY HOLD DIFFERENT OPINIONS..

THAT IN JUST MY OPINION IS A TRUE NAZI WAY OF BEING..

AS FREEDOM ONLY HOLDS WITH FREEDOM OF SPEECH..AND LACK OF CENSORHIP...

THESE ARE NOT THE TRUE AUTISTIC PEOPLE I PERSONALLY KNOW IN REAL LIFE..

AS MOST OF THEM DON'T HAVE A PERSONALLY JUDGING BONE IN THEIR BODY..AND WOULD NEVER EVER NEVER EVER EXCLUDE ANYONE FOR HOLDING A DIFFERENT OPINION..

IT SEEMS MORE LIKE SO CALLED PSYCHOPATHY TO ME FRIEND..SORRY.. BUT THAT'S JUST WHAT I PERSONALLY SEE WITH MANY OF THE BEHAVIORS OF THESE INDIVIDUALS ASSOCIATED WITH THESE ORGANIZATIONS..

BUT I AIN'T NAMING NAMES..

YOU ARE OKAY IN MY ESTIMATION..
FRIEND...

AND SO ARE FOLKS WITH SO CALLED PSYCHOPATHIC LIKE BEHAVIOR..THEY ARE JUST HARDER TO 'DEAL' WITH [email protected]

AND I DON'T KNOW ABOUT YOU DUDE...

BUT I LOVE MY SELF ENOUGH..MAYBE A LITTLE TOO MUCH AS SOME OF MY REAL LIFE FRIENDS AND FAMILY DO..SAY I DO....

HEHEHAHA..

I LIVE IN HEAVEN AND BLISS DUDE..

NONE OF THIS HATRED..NON FEELING..AND ABYSS OF HELL STUFF....

AT LEAST SUZANNE WRIGHT SAYS AND DOES WHAT SHE FEELS..

NONE OF THAT PSYCHOPATHIC..TRYING TO PRESS EMOTIONAL BUTTONS STUFF..

LIKE COMPLE STRANGERS...ACCUSING ME OF HATING MYSELF...

TRY MY NEWEST BLOG POST FRIEND TO SEE HOW I FEEL ALL ABOUT [email protected]

HERE..IF YOU LIKE..IF YOU CAN.. OR IF YOU WILL...

http://katiemiafrederick.com/2013/12/09/souldance/

YA may know hatred can be a powerful binding force among people who are dead in true happiness of bliss and heaven that can be..in SOUL AS TRUE....

But the long term destination of hate..is always a place of ultimate oblivion..and simply a black hole sun of a soul....


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09 Dec 2013, 1:51 pm

I don't like asan representing me, autism speaks doesn't speak for me, and neither does asan.

I am trying to get something going that speaks less and does more.

A more constructive thing to do than boycotting autism speaks is to make things that ackshuly help autistic children and adults in practical ways.

If we want to be "educational", then make educational materials based on our educational problems and many different types of cognition, contact local school districts with these materials, offer to help in practical ways that school officials can't even conceive of, and get a contract and funding to operate a small startup to benefit people eberryday. The autism/education nonprofit where I worked was started by parents (just mom & pop of one family) like this.

In my opinion, this is bester than making a group based on ideologies and social-emotional idears that many autistic people like me can't comprehend or intuit, so I am automatically eggscluded from not having the correct ports and plugs in a manner of figurative speaking. I also don't like being accused of "ableism" or "internalized ableism" whenever I don't unbersmand one of these idears or emotions. And I don't like being called a "self-narrating zoo exhibit" when I tell some story from my childhood that has potential to help some non-verbal child by giving some constructive idears to their parents.

Also, I don't like it when autistic adults who never went eggsperienced what I eggsperienced in my childhood speak for me as if they know eggsacly what was going on in my mind and thus misrepresent me and what I know and think and feel to the public.

These are some of the reasons I don't like and am disappointed in asan as an organization that is supposed to represent autistic people like me, but that is ok, I am trying to do something constructive and hopefully many autistic people will be interested and motivated to join different kinds of efforts.


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09 Dec 2013, 2:53 pm

I am an old autistic woman. I have kids and grandchildren, some autistic, some not. My beautiful and incredible NT children and grandkids have members of the opposite sex falling at their feet, have no difficulties obtaining work,[some of them have head hunters seeking them out] and when they start new jobs are quickly promoted. They have tons of friends. One of my NT grandkids is 16 years old and is being watched by not only college, but NFL recruiters because he is that good at sports.

My autistic kids are every bit as good looking, intelligent, hard- working and kind [actually kinder] young people as my NT ones. But they are bullied horribly and consistently. They can rarely find jobs and if they do they can't keep them They mostly have no friends and my youngest son, also autistic, who endures what the neurologists describe as "the most excruciating pain humanly possible" from another problem is also treated badly.

Until a year or so ago, when an Autism speaks commercial came on, my youngest son would say "See Mom, they don't even have the burns[ what he refers to as the ice pick like pains he has lived with for 7, nearly 8 years] and they have no hope. They are tragedies and they don't even have the burns.. Please get out of denial and help me die."

This is how their ads make my son feel. This is how it makes other kids with autism feel. These ads make parents of autistic children [whether they themselves are autistic or not] feel like the hope is being sucked out of them.[ except for desperate parents believing for a cure] I am sure that these ads are not conducive to helping NT children, parents of NT children, potential employers or neighbors see that autistics are usually awesome people but that they are instead tragedies. Less Thans.

it is never alright to use fear to manipulate others into giving. It is especially horrific when it is done at our peoples expense. And you know one thing that really sucks? When I talk to people about the importance of a huge campaign to encourage acceptance of Autists. When you speak of accomodations, different forms of support,needs for adult autistics, etc. and the person you are speaking to you, nods, and days " I agree. That's why I contribute regularly to "Autism Speaks," and, I hear they're close to a cure now so it's money well spent." AAARGH!

It angers me[but not nearly as much as it distresses me] what a brilliant [evil?] job they have done of pitting NT parents of autistic children against adult and/or higher functioning autistics. We should not be fighting these parents, but working with them. They DO love their kids every bit as much as their NT kids. As far as understanding their kids, well, being autistic does help me understand my kids/grandbabies better, but not nearly as well as I understand them out of the love I have for them. I firmly believe that the division was caused,most likely deliberately, by Autism Speaks.



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09 Dec 2013, 3:05 pm

btbnnyr wrote:
I don't like asan representing me, autism speaks doesn't speak for me, and neither does asan.

I am trying to get something going that speaks less and does more.

A more constructive thing to do than boycotting autism speaks is to make things that ackshuly help autistic children and adults in practical ways.

If we want to be "educational", then make educational materials based on our educational problems and many different types of cognition, contact local school districts with these materials, offer to help in practical ways that school officials can't even conceive of, and get a contract and funding to operate a small startup to benefit people eberryday. The autism/education nonprofit where I worked was started by parents (just mom & pop of one family) like this.

In my opinion, this is bester than making a group based on ideologies and social-emotional idears that many autistic people like me can't comprehend or intuit, so I am automatically eggscluded from not having the correct ports and plugs in a manner of figurative speaking. I also don't like being accused of "ableism" or "internalized ableism" whenever I don't unbersmand one of these idears or emotions. And I don't like being called a "self-narrating zoo exhibit" when I tell some story from my childhood that has potential to help some non-verbal child by giving some constructive idears to their parents.

Also, I don't like it when autistic adults who never went eggsperienced what I eggsperienced in my childhood speak for me as if they know eggsacly what was going on in my mind and thus misrepresent me and what I know and think and feel to the public.

These are some of the reasons I don't like and am disappointed in asan as an organization that is supposed to represent autistic people like me, but that is ok, I am trying to do something constructive and hopefully many autistic people will be interested and motivated to join different kinds of efforts.


YES! QFT QUOTED FOR TRUTH FTW FOR THE WIN!


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09 Dec 2013, 3:18 pm

aghogday wrote:
SHAKES head..and snickers......

There are bigger fish to fry in this world..my friend..much..much..muchh...



Maybe it's not a binary choice?

Or a simple question of size... ?

I think this is great. I support genetic research into the causes of autism and I dislike the message spread by Autism Speaks, though I know there are many well-meaning and wonderful people working for it.

I like your positive approach, Beth. I will support the thing you are trying to build in any way I can.



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09 Dec 2013, 10:42 pm

Adamantium wrote:
aghogday wrote:
SHAKES head..and snickers......

There are bigger fish to fry in this world..my friend..much..much..muchh...



Maybe it's not a binary choice?

Or a simple question of size... ?

I think this is great. I support genetic research into the causes of autism and I dislike the message spread by Autism Speaks, though I know there are many well-meaning and wonderful people working for it.

I like your positive approach, Beth. I will support the thing you are trying to build in any way I can.


Just in my opinion there are no binary choices in life....

Also in my opinion..overall..black and white thinking can be an overall very dangerous attitude..to absorb oneself in...

Simply as it can be so dam restricting overall..for the eventuality of any true will of thought.......

Again in only my opinion....

I don't necessarily think that black and white thinking is an autistic specific thing either...

It's more I think..an issue of conformity..to whatever group may be observed as the herd....as far as i can see about that...

But not me..I'm always gonna make my mind up for myself..based on all the facts I can find...

I don't rey on the herd to make my decision for me..ever..never..ever.....


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10 Dec 2013, 9:06 am

btbnnyr wrote:
I don't like asan representing me, autism speaks doesn't speak for me, and neither does asan.

I am trying to get something going that speaks less and does more.

A more constructive thing to do than boycotting autism speaks is to make things that ackshuly help autistic children and adults in practical ways.

If we want to be "educational", then make educational materials based on our educational problems and many different types of cognition, contact local school districts with these materials, offer to help in practical ways that school officials can't even conceive of, and get a contract and funding to operate a small startup to benefit people eberryday. The autism/education nonprofit where I worked was started by parents (just mom & pop of one family) like this.

In my opinion, this is bester than making a group based on ideologies and social-emotional idears that many autistic people like me can't comprehend or intuit, so I am automatically eggscluded from not having the correct ports and plugs in a manner of figurative speaking. I also don't like being accused of "ableism" or "internalized ableism" whenever I don't unbersmand one of these idears or emotions. And I don't like being called a "self-narrating zoo exhibit" when I tell some story from my childhood that has potential to help some non-verbal child by giving some constructive idears to their parents.

Also, I don't like it when autistic adults who never went eggsperienced what I eggsperienced in my childhood speak for me as if they know eggsacly what was going on in my mind and thus misrepresent me and what I know and think and feel to the public.

These are some of the reasons I don't like and am disappointed in asan as an organization that is supposed to represent autistic people like me, but that is ok, I am trying to do something constructive and hopefully many autistic people will be interested and motivated to join different kinds of efforts.
i was goint to post but you took the words right out of my mouth


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