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aghogday
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13 Nov 2013, 3:54 pm

Verdandi wrote:
And this. Is Autism Speaks actually promoting the Judge Rotenberg Center as an option for parents?

http://www.autistichoya.com/2013/11/an- ... s-and.html

Quote:
Given Autism Speaks' history of damaging PSAs that exploit autistic people and our families, as well as their continual refusal to meaningfully include autistic people throughout their leadership and decision-making process, I am rarely shocked when new information arises about their projects and programs. I was not shocked at their latest PSA, an over twenty-minute-long mini documentary ostensibly about non-speaking autistic people who type to communicate, but which in reality faced sharp criticism from high-profile non-speaking autistic Amy Sequenzia, who types herself. I was not shocked at their announcement of a policy summit in Washington DC this week that will in all likelihood ignore the concerns of real autistic people about education, employment, housing, healthcare, or community living. I was not shocked (though I was deeply saddened) to read founder Suzanne Wright's message yesterday in advance of that policy summit, which once again resorted to fear-mongering language like epidemic and national health crisis, to objectify autistic people as burdens on their families or tragedies for society.

But I was shocked and profoundly disturbed by the revelation that at Autism Speaks' Walk Now for Autism in Washington DC, the city where I live, they chose to host and feature the Judge Rotenberg Center as one of their exhibitors at a resource fair.

Let me reiterate that one more time in case the prior sentence was not sufficient to jar your conscience:

[i]Autism Speaks featured the Judge Rotenberg Center as a resource for autistic people and their families.[/i]


Judge Rotenberg Center is known for torturing children and teens that are put into its care. They use electric shocks to condition children.

http://psychcentral.com/blog/archives/2 ... -for-teen/

I picked an article by someone who is not autistic, since apparently autistic people have no right to object to the attitudes and beliefs promoted by organizations who conduct activism, fund raising, research, etc. on their behalf (but not to their benefit). (that is sarcasm)


That's a pretty far reach in trying to implicate autism speaks in something bad..a vendor at a an event does not imply endorsement of that vendor for their methods of treating autism...

And as far as your respect for me and Autism Speaks I really don't care.. you haven't watched your own child suffer and die from a co-morbid condition directly associated with the spectrum that autism speaks has funded to potentially help some of these children NOT die in the future..

I could care less about hurting anyone's feelings here..about silly technicalities.when REAL LIVES IN REAL LIFE ARE IN JEOPARDY OVER THESE CO-MORBID CONDITIONS..

THAT'S WHAT COUNTS IN MY OPINION..

NOT silly technicalities..or etiquette over the emotional language used..to GET THE GOVERNMENT'S ATTENTION AND FUNDING to potentially save Real LIVES IN THE REAL WORLD....

AUTISM SPEAKS MAKES THINGS HAPPEN...

Internet rhetoric..is close to useless..

Except for a hobby or diversion from something worse....

[email protected] all..

Of course..only in my opinion...


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Verdandi
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13 Nov 2013, 4:18 pm

Go to hell with your dismissive, trivializing comment about "internet rhetoric." The internet is not some rarefied realm that exists outside the real world. It is a part of the real world where real people interact and share thoughts and ideas and perspectives. These ideas can and do have an impact outside the internet. Also, if people discuss things online, those things can have a real world impact.

You can also take your dismissive, trivializing comment about "hurting anyone's feelings" to hell as well. These discussions are not about hurting people's feelings, but about - at an institutional, pervasive level, who gets to be heard when they talk about autism. And that by and large is not autistic people. Instead, you get autism speaks going on about how autism is a tragedy and people who have autistic children aren't really living. How I or anyone else feels about that is not the issue. It's the message that sends, especially given instances in which parents murder or attempt to murder their autistic children and are given a raft of excuses by the media and the population - including several people on this forum, including yourself - because it is just so wrong to view a parent who murders their disabled child in any way but sympathetically. You want to talk about feelings? Check out all of your apologist nonsense on that topic. We're not talking about feelings, we're talking about how autistic people are viewed and treated, and I do not see the value of encouraging a perspective in which autistic people are viewed as something we are not - and that PSA describes autistic people as something we are not. That is, we're not problems to be solved.

Stop and think about why organizations like Autism Speaks, which currently has zero autistic people on its board , with its message tailored to exclude autistic people from policy discussions about autistic people has such a loud voice while organizations like ASAN cannot gain enough traction to operate independently. Think about that for a minute. Why is it that autistic people who try to speak up are shouted down? Hell, you're trying to shut me up right now because I spoke ill of your sainted Autism Speaks.

Also, regarding the Judge Rotenberg Center being featured at Autism Speaks' resource fair? You make it sound like Autism Speaks bears no responsibility for who is allowed to exhibit. As if they couldn't say "We won't allow known torturers to exhibit at our event." Which they did not say, but not because they could not but because, for whatever reason, they chose not to.

You don't need autism speaks to fund this research. Considering that virtually none of its money goes toward helping autistic people who are alive right now but who cares about real people when there are people who might exist someday that they can help instead, right?



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13 Nov 2013, 4:48 pm

Seriously, these paragraphs from autistic hoya's post:

Quote:
This is the organization that is hosting a national policy and action summit to develop a national plan on autism in Washington DC this week. An organization that explicitly and unabashedly partnered itself with the Judge Rotenberg Center. Autism Speaks' history of excluding autistic people from leadership (up through the utter absence of any autistic people whatsoever on their board in the history of the organization's existence) ought to be troubling already — and their repeated insistence on justifications for violence against autistic people murdered by family members or caregivers shocking to the conscience. This alliance between Autism Speaks and the Judge Rotenberg Center is outrageous beyond belief.

I urge policymakers and community members interested in supporting autistic people and our families to support disability rights organizations led by disabled people. It is not possible in good conscience to lend one's support to an organization that not merely siphons money away from local communities and into research that does not benefit autistic people, but actively aligns itself with a facility with a widely publicized, well-documented history of brutal abuse and torture of people with disabilities.

Those of us who are autistic deserve a national plan on autism developed with us included at the table at every step of the way. We deserve a national plan on autism that seeks to benefit us rather than harm us. We deserve a national plan on autism that condemns abuses such as those at the Judge Rotenberg Center rather than encourages complacency with those practices, let alone directly endorses them. We deserve a national plan on autism that moves away from the language of pity, fear, and tragedy, and toward achieving equality, access, and inclusion in our communities.

Autism Speaks — it is well past time for you to listen.


What exactly is wrong with this that autism speaks is our only hope?



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13 Nov 2013, 7:07 pm

John Elder Robison has resigned from the Autism Speaks board in protest of their offensive rhetoric this week. The self-advocates are really making themselves heard; makes me proud. :D

I wonder whether Alex would also consider disassociating from them?



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13 Nov 2013, 7:39 pm

Autism Women's Network speaks out against Autism Speaks' "national autism plan" for excluding autistic people:

http://www.mmdnewswire.com/national-aut ... 30285.html

Quote:
Autism Speaks excludes Autistic people from discussions on National Autism Plan

By Professor Ibby Grace, AWN Board of Directors

Lincoln, NE (MMD Newswire) November 13, 2013 - - On Wednesday, the Autism Women's Network (AWN) condemned Autism Speaks, Suzanne Wright, and all entities involved in the publication of "Autism Speaks to Washington- A Call for Action" and its hostile and dishonest portrayal of Autistic people. AWN denounced Autism Speaks, the largest Autism Advocacy Group, for hosting a Summit on Autism in Washington, D.C. this week which excluded the participation of Autistic people while simultaneously endeavoring to secure a national plan on Autism.

AWN is encouraging the Autistic community and allies of Autistic people to make lawmakers aware of the exclusion of Autistic people from events and meetings this week in Washington, D.C. AWN has also organized a Social Media Campaign to bring attention to the damage that Autism Speaks does to the Autism Community by exploiting Autistic people and their families with false and negative characterizations of Autism and its effects on families.

AWN is one of many Autistic rights groups condemning Autism Speaks for its continual exclusion of Autistic people from matters that concern them. "It is notable," said Autistic Activist Sharon daVanport, President and Cofounder of AWN, "that Autism Speaks does not have a single Autistic person in a leadership position. This is virtually unheard of amongst major disability rights organizations. We are urging lawmakers to adopt the position that a national plan on Autism cannot be discussed without the inclusion of Autistic people. The absence of Autistic participation in decision making is evident in the abhorrent article, Autism Speaks to Washington- A Call for Action."

In reference to Wright's letter, Non-speaking, Autistic activist and poet, Amy Sequenzia said, " Ms. Wright used harsh and even hateful words to depict Autistics like me, the ones who require around the clock help. To her, we exist to make the lives of our parents miserable. Of course, she ignores the existence of Autistics who do not require the same amount of help, Autistics who raise kids and pay taxes, Autistics that do not fit their picture of autism as tragedy. The Summit Autism Speaks is promoting does not have Autistic voices. We are not welcome in the event and our input is undesirable. Not surprising either."

[b]Parents of Autistic children are beginning to distance themselves from Autism Speaks. Beth Ryan, owner of the popular Facebook Page, "Parenting Autistic Children with Love & Acceptance" and mother to an Autistic 7 year old stated, "I resent the deplorable language that Autism Speaks habitually uses to describe Autism. My Autistic daughter is not a tragedy. She is not a statistic. And she is not ripping our family apart. She is a cherished part of our family unit and part of the glue that holds us together. Autism Speaks doesn't speak for my family."[/b]


People are abandoning Autism Speaks because of its hostile/exclusive tone toward actual autistic people (which includes children).

But Autism Speaks is totally doing good guys, no reason for anyone to criticize it ever because they stopped promoting a video that's still accessible online. :roll: (sarcasm)



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13 Nov 2013, 7:41 pm

Plus an advocacy organization's statements about the people they theoretically advocate for are completely permissible no matter what because they do good things too! :roll: (more sarcasm)

I hate it when people try to sell me on things that aren't true.



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13 Nov 2013, 9:44 pm

Haha! thanks.. I generated some emotional responses...

That's part of how i cured my autism yaknownow...

But..here's the thing.. lives [email protected] stake where autism speaks is concerned...

Per their funding research AGAINST the real problems associated with autism that many people suffer with...

The empty rhetoric is in thinking that singing to the choir is going to make anything change with Autism Speaks...

The guy that runs it is a several decade top notch CEO for NBC..

He's not going to be deterred by anything like this..

Other than maneuvering PR around IT when absolutely necessary...

The response from Suzanne Wright more than anything else likely vindicates her real opinions..

Of online folks..WHO really don't give a crap about those individuals who depend on research for any real chance at life...

And yes this is true..as some people die from co-morbids associated with autism...

That is the bottom line..

People die..

And Autism Speaks makes a difference in the real flesh and blood world...

FULL STOP...
AS YOU SAY..
AS YOU WERE...
THAT'S JUST MY OPINION...
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14 Nov 2013, 2:06 am

aghogday wrote:
JakeDay wrote:
http://paulacdurbinwestbyautisticblog.blogspot.com.au/2013/11/autism-speaks-kidnaps-policy-summit.html


GIVE ME a break this individual cannot even accept people on the spectrum who think differently than she does..she will delete any comment from her blog that is a different opinion...

At least Autism Speaks can tolerate different opinions..if nothing else at all...

But no...Autism Speaks is doing great things for people in the REAL WORLD..ALL THE TIME FOR PEOPLE ON THE SPECTRUM WHO REALLY NEED HELP..

YEAH ..IN THE REAL WORLD..NOT SOME ONLINE FANTASY....
$50 and the brooklyn bridge is yours,for $75 ill throw in the cross bronx expressway.

in all fairness to you, i dont need to read that blog to know its B.S either.

i dont trust any of them,there all liars


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PaulaDurbin-Westby
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14 Nov 2013, 5:15 am

My blog post on this. I have copied in links to every protest article I can find, including links to the WP threads on the topic. Updating any time I have a break and can do searches.

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



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15 Nov 2013, 4:25 am

PaulaDurbin-Westby wrote:
My blog post on this. I have copied in links to every protest article I can find, including links to the WP threads on the topic. Updating any time I have a break and can do searches.

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


There may a great deal of useful information there... but your presentation made it a) impossible to read in any meaningful way amd b) to take it seriously


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aghogday
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15 Nov 2013, 12:19 pm

Feralucce wrote:
PaulaDurbin-Westby wrote:
My blog post on this. I have copied in links to every protest article I can find, including links to the WP threads on the topic. Updating any time I have a break and can do searches.

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


There may a great deal of useful information there... but your presentation made it a) impossible to read in any meaningful way amd b) to take it seriously


Well..even though I almost completely disagree with the blog post highlighted above..I personally have absolutely no problem understanding her written presentation..

She is an extremely intelligent person..who has a form of Autism like I do associated with Hyperlexia..which entails difficulty with spoken language..but extreme abilities to decode all types of symbols..and visual thinking is often part of this form of Autism too..

There are many people here on this site..who have an almost opposite way of thinking..as they have symptoms of non-verbal learning disorder..which means they navigate the world in words instead of visual images...

I never wrote anything of substance much..until I lost effective use of my sight..It was the most challenging thing I ever did to move to verbal instead of visual thinker...

The blogger simply moves in many directions at one time..as her mind is lit up like the Universe like mine...

It's a pretty incredible experience..but always hard to put into words...

But this IS exactly the problem that can be highlighted here with Autism Speaks..

Autism Speaks never directed their mission at first..except for any type of autism but regressive autism...that now the National Institute of Mental health..is actually directing research dollars for a possible disease related component that generates this type of Autism...

This is the type of Autism that Suzanne Wright's grandson has...and yes it is a very dangerous type of autism..that can lead to much misfortune for all those who are impacted...

She is 'wright' on topic with her words..but she simply is not using precise numbers for statistics..in her REAL CONCERN over children like her grandson ..with that one form of Autism that may impact somewhere in the vicinity of 25 percent of the three million children with Autism estimated by the Centers of Disease Control..CDC..in the US...

I can almost guarantee that the people who make light of the seriousness of her grandson's illness..as it impacts this specific form of Autism...disgust Suzanne Wright..as she does not have Autism and she feels the full rage of empathy for people who cannot see that other people experience life much differently than they do...

But this is Autism..It is like the old phrase of Jesus..as he forgave people who know not what they do...

With the real deficit of demonstrated and understood cognitive empathy that handicaps many people with Autism..they simply don't get it that is all..

But the funding must go on..and as anyone who has ever taken a marketing 101 class in college or even high school knows..the emotions are what pull the levers for emptying the pockets..whether it is buying new cars..or saving someone's life who may be impacted by a deadly co-morbid disease associated with Autism...

But again..the problem is empathy and Autism..no matter how many words I use to attempt to explain this in plain language..people with empathy deficits..per demonstrated empathy and cognitive empathy..for the most part..simply are not going to get it..until they reach some type of mechanism to adapt through epigenetic..and/or neuroplastic changes in their brain...

I didn't always get it..it took me decades...but it is as clear as day now..even though so many others are still blind to the empathy that most people in the general public experience that most definitely do still support the full mission of Autism Speaks..and truly understand the real suffering associated with Autism..empty some of the 'coins' out of their pockets to help other people..simply cause they are human and need help...

Autism Speaks generated 10% more revenue last year..than the year before while most other charities are either faltering..and some are either failing..

This is what happens when an extremely successful CEO of a major Network..dedicates his retirement years to philanthropy..

They simply make things happen..to help others..

And we need more people like them..to make this WORLD really work...

No matter the pedantic language flaws that Suzanne Wright or her husband may make in their emotional pleas for help from the government and the general public..their hearts are simply in the human place of using their human efforts to help other humans..

This is what it means to be a social animal..and yeah..many autistic people have trouble being a social animal..

That is why the disorder can be so devastating..

The only reason humans have survived this long.. is because of the adaptations for reciprocal social communication..to effectively..share..and cooperate...for basic subsistence and survival...

That is the big picture oF autism...and yeah it is a dire one..for survival for ALL those who are concerned...

Autism
Speaks is great..it started out as a volunteer effort...
Not many people have what it takes to make something like that happen!

And no I am not silly enough to think I am going to change any rigid thinking views of the Autistic folk here..but this is just to show the listening audience who are not autistic..that some of us do adapt..understand..and demonstrate human empathy .. in words...


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15 Nov 2013, 3:23 pm

And now you're trying to use impairments associated with autism to say that autistic people cannot be critical of Autism Speaks, because ~empathy~ would mean we'd understand that Suzanne Wright is correct? What you're doing here is manipulative gaslighting. You're trying to argue that we shouldn't say anything because we are neurologically incapable of understanding where Suzanne Wright is coming from when she paints autism as the worst tragedy to ever strike any family (the families, not autistic people, because in her writing autistic people are basically objects to be pitied, mourned, and cured, not real people).

Plus you can't even pretend to argue that Autism Speaks is all about "regressive autism" when Autism Speaks represents itself about all autism at all times no matter what. That is, until critics say "I am autistic and you do not speak for me," at which point Autism Speaks magically becomes an organization focused on one specific representation of autism that excludes everyone who doesn't fit into that category. Yet, AS proponents (like yourself) don't hesitate to use the existence of such people to make their case about autism being a horrible thing that needs to be stopped at all costs. This is called "shifting the goalposts."

I can see why you're ramping it up. You argued for years that Autism Speaks has changed and that we're all wrong for being skeptical and critical of actions taken by Autism Speaks, and now they've proved they never changed all along. And then you reveal that you were never concerned with whether or not they changed, because you support what they are rather enthusiastically. And that makes it impossible to respect your arguments.

I am also curious if Paula actually silences dissent on her blog, or if she simply doesn't allow you to post your commentary about why we have no right nor neurological capacity to disagree with Autism Speaks. This may be viewed by you as "silencing dissent" but it looks like to me that it might be maintaining one's boundaries in the face of invalidation. If I were running a blog, I'm sure I would not want to play host to debate over whether autistic people are sufficiently human to be taken seriously in criticizing how we're treated and discussed.



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15 Nov 2013, 3:34 pm

Feralucce wrote:
PaulaDurbin-Westby wrote:
My blog post on this. I have copied in links to every protest article I can find, including links to the WP threads on the topic. Updating any time I have a break and can do searches.

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


There may a great deal of useful information there... but your presentation made it a) impossible to read in any meaningful way amd b) to take it seriously


I didn't have this problem. I can understand the format making it hard to read as there are many formats I find difficult to read, but how does that even come close to making it impossible to take it seriously?



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15 Nov 2013, 4:39 pm

Verdandi wrote:
Feralucce wrote:
PaulaDurbin-Westby wrote:
My blog post on this. I have copied in links to every protest article I can find, including links to the WP threads on the topic. Updating any time I have a break and can do searches.

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


There may a great deal of useful information there... but your presentation made it a) impossible to read in any meaningful way amd b) to take it seriously


I didn't have this problem. I can understand the format making it hard to read as there are many formats I find difficult to read, but how does that even come close to making it impossible to take it seriously?

The two are two separate issues... the formatting for me is disconcerting because on topic flows into another and back without transitions, making it unclear that there has been a slight topic change... that is why it is hard for me to read in any meaningful context...

It is hard for me to take it seriously due to the fact that in the portions that are written by the blogger (as opposed to quotes from other sites), the word choice is similar to many conspiracy sites... including, but not limited to moon-hoaxers, anti-vaccination, tea-partiers, religious zealots, and raw foods advocates...

I am not saying anything about the content in any way... The content MAY be good... but these two aspects of the presentationof information make it difficult for me to swallow anything said there... I know this is MY issue due to my past experiences with the aforementioned groups... But it is what it is...

The blogger has a passionate stance on the subject... and that may very well be what puts me off about the style... I am passionate, but relatively withdrawn from it (again, an issue that I have and do not put on anyone else)... When passion interferes with a logical discourse, I am automatically, through personal experience, disposed towards walking away from it... partly because excessive passion interferes with intellectual intercourse, partly because most (please note the careful word choice of MOST) people who are that fired up cannot leave the passion to the side and are irrational about their cause... and I have little room or tolerance for irrationality... Again... this is my issue, and no one else's

However, I would like to point out that such impassioned positions rarely, if ever, make a difference in the united states... Autism speaks is a private organization, and as much as I hate to say it... as long as they are not breaking any laws in the pursuit of their goals, we have little, if any recourse... and honestly, we have no input or say as to how they will proceed... While the nature of the group has changed in the past few years, I do not want them speaking for me... but our opinion will not change it.


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aghogday
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15 Nov 2013, 4:53 pm

Verdandi wrote:
And now you're trying to use impairments associated with autism to say that autistic people cannot be critical of Autism Speaks, because ~empathy~ would mean we'd understand that Suzanne Wright is correct? What you're doing here is manipulative gaslighting. You're trying to argue that we shouldn't say anything because we are neurologically incapable of understanding where Suzanne Wright is coming from when she paints autism as the worst tragedy to ever strike any family (the families, not autistic people, because in her writing autistic people are basically objects to be pitied, mourned, and cured, not real people).

Plus you can't even pretend to argue that Autism Speaks is all about "regressive autism" when Autism Speaks represents itself about all autism at all times no matter what. That is, until critics say "I am autistic and you do not speak for me," at which point Autism Speaks magically becomes an organization focused on one specific representation of autism that excludes everyone who doesn't fit into that category. Yet, AS proponents (like yourself) don't hesitate to use the existence of such people to make their case about autism being a horrible thing that needs to be stopped at all costs. This is called "shifting the goalposts."

I can see why you're ramping it up. You argued for years that Autism Speaks has changed and that we're all wrong for being skeptical and critical of actions taken by Autism Speaks, and now they've proved they never changed all along. And then you reveal that you were never concerned with whether or not they changed, because you support what they are rather enthusiastically. And that makes it impossible to respect your arguments.

I am also curious if Paula actually silences dissent on her blog, or if she simply doesn't allow you to post your commentary about why we have no right nor neurological capacity to disagree with Autism Speaks. This may be viewed by you as "silencing dissent" but it looks like to me that it might be maintaining one's boundaries in the face of invalidation. If I were running a blog, I'm sure I would not want to play host to debate over whether autistic people are sufficiently human to be taken seriously in criticizing how we're treated and discussed.


No..I am not saying that at all.. you are putting words in my mouth again..

I am only saying what I wrote..that is all...

Feralucce's rational analysis above is almost in complete agreement with how I feel about this situation..2

NO one speaks for me but me...

I don't let what other people do or say affect me at all..in a negative way...

I am a survivor..

Not a victim...

But OH! HOW I DO UNDERSTAND HOW NOT ALL PEOPLE HAVE THAT FORTUNE AS I WAS IN THE OTHER PLACE TOO..FOR A SUBSTANTIAL PART OF MY LIFE...

So yeah..whatever..live and learn..complain and be a victim if you think that the words of other people control your life or anyone else...

I refuse to be ruled by the words of other people..governments..corporations..religions..or anything that goes against my personal true will opinions..

It's not hard at all for me..NOW..and yes I feel great pity and compassion for people who do not have the ability to operate their brains..such as this...as it is simply freedom..

AGAIN NO ONE SPEAKS FOR ME BUT ME..

SO AUTISM SPEAKS IS NEVER A THREAT OR NO ONE ELSE..

FOR A SURVIVOR INSTEAD OF VICTIM....

But every human social animal must learn this ..to have the best free life....
It's not easy for some..
[email protected] ALL...

Good luck...I truly wish the same for you..and everyone else that posts here..that wastes their time on hate..in my opinion...

And again..this is only my opinion..do as thou wilt....is my philosophy on [email protected]


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