Check out my wall: http://www.facebook.com/profile.php?id=1081291661 , maybe help me out with this convo and with the ones on the Autism Speaks walls?

This:


Hi Anastassia. We're all for free speech and everyone is entitled to their own opinion, but please stop posting the same message over and over again on the various Autism Speaks Facebook pages. What you're posting is simply not correct. We'd be more than happy to talk with you to let you know what we're really all about though: just let us know.

Hee hee, why don't we all go paint their walls with the same message, and different names!  I haven't got Facebook, but if I did, I'd certainly spam their little behinds!  
Autism Speaks, LISTEN TO US, YOU STUPID F**KERS!
Alison

I wouldn't risk it. They can just report you to to Facebook and close your account. Then you would have to start all over and re add everyone and photos. Just hope you have back up then like all your photos saved and all your friends written down so you remember who you had on there.

The reason it annoys me is that it's usually used just before somebody attempts to pick myself and my life apart with a pair of plyers and a hammer, metaphorically speaking, yet I'm supposed to overlook the insult because they say they are "sorry" about it.  I'd sooner they just come up to me if they have a problem rather than pussyfoot around it with polite circumlocutions.  

No, the comment was meant as an insult and I took it as such.  It wasn't even a particularly clever insult, and was as insulting to those of us on this site who may genuinely have schizophrenia.  Maybe the poster would like to also poke fun at diabetics, for instance?  For the record, I have Hashimoto's Thyroiditis and Lupus.  The poster can have some fun with those if he wants to be insulting!

Alison

I generally try not to get upset when NTs use schiz as an insult (they normally dont know any better) but for it to be used as such here, then yes it upsets me. I still struggle to see myself as AS, I've spent so many years as a schizophrenic.It feels like wearing a new pair of shoes that haven't bedded in yet. It was hard growing up with that label, really hard. Much of my younger years were spent being the "weird schizo" at school. I dont appreciate it being banded about casually as a piss take of someone.

I'm about to. If it says Harry Graham has sent you a friend request, that's me.

If it's me, the work history thing is a joke. One part of my school is a joke, but I did wish that I went to Hogwarts...
The reason why my accont is like that is. Loads of people who are at my high school and my other high school also ahave facebook, it's to prevent cyberbullying.

Then they put.

It took them this long to come up with a response. This long to come up with more bullshi* lies.

*implied
Sorry, I had to correct that.

They've actually made the mistake, I copied and pasted it from Facebook.

ASSHOLES!!

*Coughs* BULLSHI* BULLOX A LOAD OF CRAP *Coughs*

Now, I'm off to rant... When the Nazi replies, I'll post it here...

This is what I put, just waiting for the fuc*ers to come up with more bullshi* lies.

There are parents using the autism speaks support page on facebook to find support amongst each other.  It doesn't mean they have to align themselves with the organization's goals.  Autism Speaks supports vaccination and there are still some parents that go to that site that discuss they believe vaccines may still play a role in causing autism.  

The parent you are talking to is expressing a neurodiverse point of view about her son, that has changed since she first posted there.  She doesn't have to believe in a cure or anything else that it is believed that autism speaks stands for, just because she is on a support site that many parents use to talk amongst each other.

The more parents that think like her that express this opinion on the support site, the more likely it is that the autism speaks organization is going to move toward a neurodiverse portrayal of autism.  That's a good thing; it could help people understand autism better, and hopefully autistic people will be understood and treated better in the world.

A person is not required to donate to autism speaks, or even support autism speaks to talk to other people on that website.  They don't even have to understand anything about what autism speaks does.

There are diverse people that come to the AFF site with diverse opinions about everything in the world.  It's the same on any internet discussion board.  We live in a free country with freedom of speech, as long as we play by the rules of private discussion boards.

It's a support site for people associated with autism provided by autism speaks, not a support site for autism speaks. Rarely do you even hear anyone talking about autism speaks on the support part of it. Just a bunch of people getting support from each other, like they are here, at WP or any other autism support site, designed for the public.

In my opinion you are fighting a dog that is not in the fight.

You are calling this lady a bunch of nasty names, here, and she isn't saying anything to you to deserve it, on an objective basis.  It's obvious to anyone that reads the correspondence from an objective point of view.

If one disagrees with Dana marname's quote on the epidemic of autism, they can call her out on it, by emailing her directly.  Parents don't pick the hyerbole slogans these marketing folks use, but if enough people express that they don't like them, the slogans will change.  That's marketing 101, if they don't respond appropriately to customer input, they won't last long in their jobs.

I could care less what hyperbole expression is used regarding epidemic,  I have enough sense to know that autism numbers are going to increase because of better diagnostic procedures in the future, instead of decrease. There is no objective proof of an epidemic other than statistical numbers that are in fact at least part of the result of better diagnostic procedures, and improved methods of gathering data. Those methods and diagnostic procedures will improve in the future, and greater numbers are almost inevitable.

But, if I wanted to stop the hyperbole expression I would email Dana Marname directly with her autism speaks email adress and state: Ms Marname, VP of Public Relations, Autism Speaks,  In light of the recent interview that you provided to the autistic community regarding a cure and eradicating autism, since you recently publically stated in that interview that eradicating autism was not a goal of autism speaks, your slogan listed by your bio, on the autism speaks website, states "we are going to end this epidemic of autism" sounds like your goal is to eradicate autism.  I and others in the autistic community find that statement offensive and suggest you remove it from your website.

If ending the epidemic of autism does not mean eradicating it, what is it that you mean by that statement?

Respectfully, ******

Hmm, yes, but isn't that rather like saying that you believe in eating healthy home-cooked meals, yet eat every meal at McDonald's?  The end result is still the same: you're likely to get sick on the high-fat, high-salt, high-cholesterol diet.

Alison

I would guess many that visit the autism speaks facebook support site, do agree with the organizational goals of autism speaks, if they are paying attention and know what they are.  

My statement was in reference to the suggestion that the lady in question and some others like her are in alignment with the goals of the organization.  She started off looking for help anywhere she could find it and found Autism Speaks.  

She stated she was questioning the organizations goals, quit funding the organization a year ago, doesn't believe her son needs a cure, and is stating a clear neurodiverse opinion on her son's autism.  

It seems like this would be an excellent opportunity to suggest an alternate organization for her to support in the area where she lives, that supports neurodiverse goals, rather than questioning her integrity as a human being.

People get caught up with Autism Speaks because it has the biggest voice in publicity.  The more people that put out the positive word about other organizations, the more likely it is that those organizations will be considered as worthy alternatives.

I think every autism activist should be "armed" with a list of worthy alternatives.  If just one individual changes financial support to a different organization, that makes the real impact, not attacking an individual for being associated with autism speaks.

I haven't heard anyone say anything anywhere about any organizations in the US except for ASAN and Autism Speaks.  ASAN isn't equipped to do the kind of things that an organization like the AANE organization can do for some autistic people.  

For others ASAN is all they need.  I haven't researched it thoroughly but there have to be many more organizations spread out in the US, that don't have the publicity dollars that Autism Speaks has to get a message out that they exist.

Lots of people come to this site to view it that don't post here.  There could be thousands a month from AANE territory that come here that don't even know they exist.  What they do find out is Autism Speaks is bad and neurodiversity is good, but no real message of what their options are as far as potential worthy organizations to support, where they live.

This is something that organizations like AFF can do that will make a real difference; there are a number of potential voices here, and also a number of people with internet skills that can get this positive message about other organizations out.

Neurodiversity is good.  Autism Speaks is not good. What's next? Worthy alternate organizations to support in different areas localities in countries, particularly if there isn't one worthy national one like the NAS in the UK to support.

My responce.

I really hope she switches, I really do. To prevent this kind of thing happening again. In terms I screwed up and AuSpeaks is dragging in innocent parents to support their twisted orginization and agenda. Hell if I didin't know as much about their aim as I do I'd proabably support them myself. I hope she finds another orginization that actually helps and supports the Autistic community rather than try to "dispose" of it.

That was a nice response that you gave the lady.  Glad you were able to determine she wasn't an official rep. aut. speaks.

Try to realize that some of these people are desperate for help like anyone is Some_Bloke.... sometimes we just have to be careful with how we react or say things.

EDIT: I need to remember that especially