When Is a Humorous Site Not So Funny? Autism Speaks Has Its Say
Autism Speaks got pissed off because [14-year-old] Kelly, [a child with autism], built a parody website, NTSpeaks, which humorously suggested that interventions for certain annoying and intolerant behaviors of the non-autistic population might be in order. The site was designed to resemble Autism Speaks' website.Thinking this might be one of those "grapevine" stories that gets exaggerated as it's passed on, I wrote and asked Adam Pockriss, the public relations person for Autism Speaks, what it was all about. Here is Autism Speaks' official statement:Building such a site was, of course, completely legal. American copyright law specifically states that a parody is not a copyright violation. Additionally, the First Amendment protects parodies along with other forms of free speech. The parody is a time-honored genre in American public discourse; concerned citizens have been expressing their political opinions by way of parody ever since rebellious colonists in the 1700s plastered their cities with handbills lampooning King George.
Apparently Autism Speaks' lawyers decided, however, that it would be very easy to intimidate an autistic child who did not have the means to fight back. They sent Kelly a letter containing a ridiculous demand for $90,000 for "funds lost." Then they followed that up by claiming that they were willing to settle the matter without receiving any payment because of Kelly's age, provided the website was taken down. They also browbeat Kelly into destroying the source code and giving the domain name to Autism Speaks.
Autism Speaks, like every organization, is obliged to protect its name and trademark. The individual who used the Autism Speaks name and logo without permission was asked to desist, and he agreed to do so. Autism Speaks provides a valuable resource for families who have just received an autism diagnosis, for those individuals and families living with autism, and for the community at large interested in finding out more about the disorder, science, treatment and advocacy. If an improper use of our name or logo creates confusion among those we serve about the source of information they are seeking, it is a disservice to all.I followed up by asking whether the person in question was, in fact, a 14-year old child with autism - and whether he was threatened with a lawsuit. In response, Adam replied "No, Autism Speaks did not threaten to sue."
Based on this, I'm guessing that the individual in question was, indeed, a 14-year old child with autism... and that, while Autism Speaks may not have actually threatened to sue, they certainly made it clear that the site was to be removed - immediately - or serious consequences would ensue.
I'm not quite sure how this story became so public - but it has, and its impact may be significant. What's your feeling about this situation? Does it deserve more attention, or is it just a minor bump in the road?
Comments
Speaks volumes to me and just underlines what I have heard about AS and how it behaves towards adults on the spectrum and let us remember that this is a child. People with autism should not be so easily dismissed.
Is this really what we want them to be doing?
It was a “cease and desist” letter, which is like a warning that the person may be sued if she doesn’t stop doing whatever the lawyers are complaining about.
I think this goes to show that Autism Speaks is acting like a big souless corporation. I understand their concern with the copyright infringement, however they should have approached the matter in a more tactful way. It was obvious that the site belonged to an individual, the site traffic was minimal, and it in no way posed a threat to Autism Speaks. Now, after that letter, they managed to give way more publicity to a parody that nobody knew about, AND made themselves look like jerks.
Unfortunately autism speaks did not start up this way and did not have the goal to harm autism.
However, the institute recieving millions in fund is damaging possible cures to be able to be find for autism.
The institute seems to be backed and bought by CDC inorder to voice their saying according to their views.
What a shame is this autism speaks. the name should be changed to autism promotion.
imbeciles
I am guessing not to guess at anything, what is true and what isn’t, more so when things get blown up way largr than it was. I hold my child accountble regardless of autism. it may not had been a copyright violation but I don’t allow making fun of anyone or any org when it comes to my child.
parody websites and free speech if it was done by a child with autism, I’d be guessing intimidation was not so much a factor but a great shock value against Autism Speaks. interesting title for a child on the spectrum to create.
Autism Speaks will go under just do to the autism community jumping the gun
Whether or not it was an actual lawsuit was threatened is largely beside the point. Obviously, this teenager was intimidated enough to take the site down. That’s the big problem, the fact that through whatever means they may be using, Autism Speaks is censoring a site that’s critical of them
This is shocking to say the least. A company that is supposed to be helping people with Autism, actually threatening someone who has Autism. You should look at Autism Speaks annual report for 2006(they made over 20 million) and they havent spent a dime on helping people with Autism. They are proving that they are the powerhouse and just here to make money and restrict people with Autism of there free speech Right. I would like to see the time when someone sues them..
It’s pathetic for any organization as large as AS to go after an adolescent parodist. In this case all the more so.
Our society is far too litigious on the whole. There’s too much power in the hands of the people who have too much money. And wielding it against a child (to use the legal vernacular,) especially against someone of their own ilk, who they claim to work in the best interests of. To intimidate a person who, (based on common Autistic social behaviors I assume)worked their whole young life to overcome discomfort in social interaction. I’m disgusted with AS right now. All men are NOT created equal.
hey, I am from Aspies for Freedom, which Kelly (known to us as abscout) is a long time member of.
she has stated that she would be willing to speak to the media about this, if anyone wants. her contact info can be found on the relevent threads in our forums
as for my two cents?
par for the course. its not the first time, wont be the last.
Autism Speaks does NOT speak for the autistic community, They exploit the community by seeking donations in our name which they then use to spread hideously subtle propaganda aimed at subjugating and disenfranchising people with Autism.
As this case illustrates, they will not hesitate to turn their evil powers against one of us if it suits their nefarious agenda.
people of the world, do not be fooled by these charlatans.
Autism Speaks has lost it. All they care about is the research into the genetic origin of Autism, so they can promote the effort of eugenics in order to destroy the Autistic Culture. The parody is justified, and I think that indeed this should be given maximum publicity so that Autism Speaks are forced to re-evaluate their aims beyond the research conclusion.
Sandy said: “Autism Speaks will go under just do (sic) to the autism community jumping the gun”
Probably not. Autism Speaks seem to have enough money and influence to be able to shrug off the minor inconvenience of a little adverse publicity.
However, if their idea of advocacy for people with autism is to attack the right to free speech of a 14-year-old autistic person, they deserve every bit of bad publicity they get.
You should look at Autism Speaks annual report for 2006(they made over 20 million) and they havent spent a dime on helping people with Autism.
Maybe because their ‘real’ aim is to wipe autism out altogether and not help individuals and families living with it. AS are masquerading as a group who are everything to everyone who lives with autism, when in reality they are something very different.
Will this hurt them enough to stop them? I doubt it simply because they have a mighty powerful snowball rolling now with some mighty powerful backers. Has no one ever wondered why the powers that be are working with AS so closely now issuing bills and promising money to their cause? The powers that be stands to save billions if autism can be stamped out. Time to wake up and smell the coffee me thinks.
did anyone bother to click the link to see the NTSpeaks site? it’s a complete replica site to Autism Speaks, so it wasn’t so much the title af the site, but the site itself including exact photo of the child. freedom of speech does not include the exact site with red arrows. comments against AS is one thing, using their exact same site is, well, stealing.
“They also said any other websites to use the Autism Speaks Logo’s, Phrases, And All Trade Marked Material Against Them Will Receive A Lawsuit As Well” um, that would be of any organization. and it should matter if this child was on the spectrum or not.
I would bet if any of you owned a site, and someone copied it to a T, you’d threaten to sue as well. it should not matter if it’s Autism Speaks or not or who replicated their site. I would bet the kid did it for media attention against Autism Speaks and walla, here we all are bad mouthing them.
My son wore a button for halloween, it stated “Yes this is my costume, I am dressed as a neurotypical.” I suppose that Autism Speaks has lost it’s sense of humor and is taking itself too seriously. I agree that they have gone too corporate and have lost thier focus. I will not support the eugenic nature of this organization and the way they try to scare parents and the pity party they promote after a child has been diagnosed. Autism Speaks doen’t Speak for Me!!!
pikajedi3 said ” hey, I am from Aspies for Freedom, which Kelly (known to us as abscout) is a long time member of.he has stated that she would be willing to speak to the media about this, if anyone wants. her contact info can be found on the relevant threads in our forums”
we all should know how and why this became public. media attention against Autism Speaks. I would bet this was a pre-planned web site copy just to gain that media attention.
it’s going to backfire, and this child is going to be dead center of it all.
Sandy said, “we all should know how and why this became public. media attention against Autism Speaks. I would bet this was a pre-planned web site copy just to gain that media attention.”
Whatever. No one needs to sabotage Autism Speaks…they are doing it pretty well all by themselves.
This “child” deserves our support and obviously has a sharp wit. I expect to hear more from her. Good going!
we all should know how and why this became public. media attention against Autism Speaks. I would bet this was a pre-planned web site copy just to gain that media attention.
it’s going to backfire, and this child is going to be dead center of it all.
Hmm having looked at the threads running on Aspies for Freedom this does not look like a stunt to me. The poster may be a member there but she is not one of their most active and she went looking for advice, which they gave.
I am wondering how people with autism are meant to react to a group who quite clearly have no respect for them as human beings and not time to ’speak’ with them. As my Dad would say you sow as you reap.
it isn’t about how a group with autism or Apsies react-
it’s about copying copyrighted websites-what should Autism Speaks reaction be “oh you have autism? OOPS you go right ahead and copy our site.” it’s not ok because they’re on the spectrum, no give them the right or excludes them from legal actions. that’s a fact of life we all may deal with on day.
I have never agreed with everything Autism Speaks has done or what their daughter produced. however, those issues are aside from this, they’re not conjoined.
you cant screen capture something you don’t legally own, and place it on a site. no one can.
Well, I’m sure there are some lines of gray here that I don’t know about, but I think any organization has to be able to laugh at itself a bit. Suits have a hard time doing this, they take their business very seriously – rightly so, but they can create a bit more damage in their reaction to say, a parody web site, then they could be just ‘letting things be’.
Autism Speaks has done alot of good, but in all cause-based efforts, some see the good, others the bad.
I must say this situation has gotten very overblown, and it’s a shame. It would have been nice if Autism Speaks had been able to work with Kelly – maybe suggesting that she write a little something for the Autism Speaks website… or otherwise take a role in helping kids with autism find their own voices.
The problem, I think, is that Autism Speaks seems to be a pretty straightforward foundation – run by pretty typical corporate folks. But the people in whose name they are working are anything but typical.
I guess a clash was inevitable… and, as I say, it’s a real shame – because Autism Speaks has such an opportunity to bring people with autism to the fore, provide them with a voice, and really open people’s eyes to just who Autism Speaks speaks for!
Lisa (Autism Guide)
the only one not letting it be is making this all public, and then the autism community going at it and bashing an organization for what they legally had a right to do.
I’m sure if I screen captured Lisa’s site, scribbled a nasty face on her, put red arrows pointing to things she says on her site and added it to my web site- would it not be illegal? or a simple parody against all the good Lisa does here?
some people do have a sense of humor- some people just do not see it that way and before you know it, the norm will be screen shots of any autism site in the name of a parody.
“did anyone bother to click the link to see the NTSpeaks site? it’s a complete replica site to Autism Speaks, so it wasn’t so much the title af the site, but the site itself including exact photo of the child. freedom of speech does not include the exact site with red arrows. comments against AS is one thing, using their exact same site is, well, stealing.”
Just to clarify, the “NT Speaks” site being hosted by AFF now is NOT a mirror of the original site which was taken down, which was not an exact copy of the Autism Speaks site.
Indeed, the story is true. I happen to be a friend of Kelly’s and indeed he was sued by autism speaks and is a 14yr old child who has autism. I was appalled when I was told the news of this occuring last week. I am anxious to see what further happens with this case as it further pursues to hit the media. My anger towards autism speaks sored when I was told by Kelly of this news. How could they have any nerve for “Autism Speaks” to sue an “Austic Child” who is exercising there right to free speech! Of course, any organization is going to say they are loosing “money” from this whole ordeal because we all know that $$$ talks in America. And yes, a 14 yr old autistic child CAN make a webpage. Everyone ceases to remember that there are high-functioning people with disabilities who do run a very normal life, much like myself who has a leg disability!
nathanww~ from the AFF site “They also said any other websites to use the Autism Speaks Logo’s, Phrases, And All Trade Marked Material Against Them Will Receive A Lawsuit As Well”
thats what it’s about.
anyone else with a screen shot I’d expect AS’s attorneys to be right on it LOL!
I wish I could see the site.
Look at the countless parodies done by parents of autistics.
Google still has a cache of it
thanks for sharing- just what I said, and just what their letter said-
“They also said any other websites to use the Autism Speaks Logo’s, Phrases, And All Trade Marked Material Against Them Will Receive A Lawsuit As Well”
Parody is protected under free speech. AutismWeeps can like it or lump it but that’s life. They can suck it up.
Going after a minor is reprehensible. There is no way this was a publicity stunt, the site had been up for ages before this happened. And it didn’t look like it does now, but I sure want to put up a parody of my own now. And AutismWeeps and their 30 lawyers can kiss my autistic behind, because I’m a lot harder to intimidate than a 14 year old.
Defending them is pretty gross. They are big bullies who never grew out of middle school. Way to gang up on the weird kid, all over again. Classy. Real classy.
Ok Sandy, tell the truth… you work for Autism Speaks, dont you?
it looked to me as if the site was created December 2007
actually, I do not work for Autism Speaks and my opinion would be the same since I can separate issue from issue.
Pepsi has a web site- they can not use Logo’s, Phrases, And All Trade Marked Material belonging to Coke. none of us could use any of those things without permission. parodies can be of cartoon fashion, but they generally do not include trade marks. setting aside all other feelings towards AS, yea, in this one particular situation did they do the right thing? do we all believe what is printed on the net? you see this plastered all over the autism community but by who? Autism Speaks?? should we blame them because they have the funds for attorneys?? or blame them since AS listens to the advise of their attorneys??
it may just be me, but it seems they’re the only ones doing the right thing: being quiet and not adding to it.
I have often posted here my opinion of Autism Speaks in the past. I am not defending them, but the issue.
I also feel ones opinion should refrain from name-calling since that really is middle school behavior.
any of you can look up parody and copyrights, and case histories. applying your free speech rights here on this site may be allowed, but the result may be less reader involvement and it’s not fair conversation.
you all have a great rest of the week
No. We should blame them because they sicced 30 lawyers on a 14 year old. That is bullying behavior, poor use of funds, completely contrary to their stated aims to help autistic people, and illegal since you CAN’T SUE A MINOR.
Call a spade a spade. Autism Speaks is made up of eugenicist bullies. This is the first time they’ve talked to an autistic, did you know that? No? Now you do.
no, it would be the 2nd time. I’m sure the Wright’s talked with their grandchild often. and in this case, they didn’t probaby actually directly first talk to this site owner, the attorneys sent a letter. I’m sure the Wright’s had no contact at all. those 30 attorneys were also on letter head, not in their face.
I would imagine the letter was served to the owner of the site- be it who it ever may be. just because a site states an age (if one does) we should all know it may not be true. and I am sure when and if it came right down to it, the parents of course in the end, responsibile for minors.
I do not myself believe in a cure nor do I really think it’s possible however no one can dismiss this hope many parents do have for their own children. but this is not about a cure, this is not about their mega money or their dealing with typical children as opposed to ones with Asperger’s. I personally could care less who they talk to.
I believe the impact of this is more significant here than it really is.
From this day forward she will be named!! “Ned Kelly”
Hi im kelly i did infact have the site removed against my will. and i plan to re upload it in a thefuture
This is only from hearsay, but I believe there are some inaccuracies on both sides of the story told here: abscout (Kelly) said her supervisor destroyed the source code; I don’t ever recall her saying the letter instructed her to destroy the source code. Also, Autism Speaks DID send a letter which threatened a law suit for an outrageous sum, whether or not it was an actual suit.
I personally love the idea of a mock site of Autism Speaks. However, no matter the animosity I may feel for such a conglomerate “non-profit” organization, I would have to concede that there is copyright infringement going on there. By having a replica of the original site, using same pictures, and logo, that does seem like it’s crossed over the line and fallen outside the protective parody boundaries of the 1st Amendment.
However, I would LOVE to see the website redone (though it is now on AFF) to the point the parody is just as poignant but that the logos and pictures are substituted/changed enough that it is in fact protected by the laws of parody.
The things, however, which bothered me the most about Autism Speak’s behavior were:
1) the scare tactics they used; I mean, $90,000, COME ON!
2) that Autism Speaks threatened to sue her not only for copyright infringement, but for donation funds lost because of her mock site, and one millionth of supporter decline (she said she barely got one hit a day on her website)
3) the fact they dropped the whole thing once they found out she was a minor and autistic
As it is now playing out on a small-scale, I would suspect their biggest reason for backing off (aside from a lawsuit against a minor) is that this would mean poor PR. Which, once again, smacks of BIG BUSINESS.
Imho, Autism Speaks had the right to claim copyright infringement. HOWEVER, to threaten to sue her ALSO for lost funds and supporter decline due to her mock site, that’s ASININE and just GREED.
This is the behavior which sickens me.
Ah, sorry, Kelly. Didn’t see you’d posted.
Go for it!
Most Big people aren’t always aware just what attorneys threaten, but they should be. so you’re confirming AS dropped it once they found out? that would sound more like the Wright’s than attorneys and I am glad to hear it. if any had dealt with attorneys, that’s what the whole thing stunk of, more than actual Autism Speaks. of course they’d speak about donations, pretty much that’s what this Org does LOL
I have to agree I dislike much of the ads on TV, particularly the baby sitter calling 911 and the car seat and accident rates. guess what, what are the odds of your child having autism and those 2 ads happening anyway? the AS media is shock value, but we live in a world I guess where that’s what wakes people up. the only rational thing that makes me feel better about the ads is the word autism is being said during prime time (my prime time at least) and prior there was never an ad on TV ever relating to autism. many of their ads are for awareness of the signs more so than a cure.
who really cares who mocks Autism speaks or disagree’s with them, happens all the time with many however it can be done tactfully and legally. everyone has something to say, but to be effective in being listened to and value the opinion, no one will if it’s done at the expense of another.
Autism Speaks = Scientology
Those bastids sue anyone who gets in their way.
Of course, autistic people are allowed to speak as long as they don’t upset those people who are out to cure them.
No wonder we adult AS people are very careful who we tell about our mental differences.
Go Kelly – a quick glance on the Autism speaks site made me recognise they were a bunch of crackpots, and well deserving of parody
Another example of AutismSpeaks not really caring about the autistic community they claim they are here to help. Ask any parent of an autistic child what they receive from AS, and likely all you’ll hear is “Requests for donations.” Way to go, AS. How much donated money did they have to pay their legal department to handle this? What a waste.
This is simply a suggestion.
instead of going against an Org. that will not change what they’re doing and since for those who do and do not want a cure (since a cure would be a long ways away) why not help those parents? Autism and Asperger’s can be very different. How did you gain self confidence to who you are? How do we as parents help our children find that same self confidence you seem to have? Just what do you say to a child who knows they have autism and wishes they didn’t? What would you say to a parent whose child is non verbal, to help gain that same outcome? Instead of focusing on no cure, why not help parent’s instill the same self confidence in their kids, and the best ways to do that? All kids and some adults too, go through peer pressure and ridicule, every one has a different tolerance levels but those with autism can have much less and be an easier target due to their behaviors. Many with Asperger’s and autism go through depression caused by not fitting in, or working so hard to fit in and it never really happening. How could we help our kids through that? How did you make it through that? I have talked with many adult’s with various disabilities with in the autism spectrum, and many are more than happy to share their upbringing with a parent who needs insight and I have always been grateful for those who want to help.
I think you’re wasting your time with Autism Speaks, they’re there and function more because of what parents really want (at least some) a cure. You’re never going to change that, but you could change and help where it starts: the parent. I think many who have better articulation and verbal expression could greatly help parents with their children, and that certainly wouldn’t be a waste of time.
I’d be listening.
PS
what organization does offer direct help to parents or children with autism? Autism Society offers courses of which some I took, but they also are not free. All organizations represent something and any one can create their own. I’m always amazed how people expect so much from Autism Speaks to be of direct help to them. Autism Speaks spent a bundle on those free DVD’s, no other Org yet has to offer as much as what Autism Speaks has.
Maybe if we could loose the word ‘cure’ it would be a start. I can not begin to imagine how demeaning this must be to a young person or older person with autism or AS (Aspergers Syndrome – I also feel that Autism Speaks (AS) have managed to steal that too) I do not want my children to ever think that they were such a disappointment to me or failure that I spent all of my energies trying to find a ‘cure’ for them. Our children will one day be adults with autism and AS. Could we not perhaps find a way of saying that we want to find the right therapies and the right resources for our children to enable them to grow with the best of everything that we can give them. Maybe if we loose ‘cure’ and ‘defeat’ from our everyday language our children might just believe us when we tell them that their autism made no difference to the way we felt and feel about them. I do not want my sons to feel any negative vibes from me. Negativity breads negativity. We need to spend a billion building the self worth and self esteem of our young people with autism. Maybe then they will believe that we are not trying to extinguish their flame.
I do understand that the spectrum is so huge that it is not the same for all of our children. I would like to think that even if you do not have a child with AS or High Functioning Autism, you could have the understanding and insight to realise that fighting any campaign that seeks to cure and destroy will do just that to the self worth and self esteem to anyone who does have AS or HFA. Do we really have to be so cruel.
The ones who use the word cure are parents who want that and really it’s their hope, and places that promote they have a cure. When my child was 2 and 3, no way then would I had thought he would or could be anything like he is today. Many kids don’t even get that far and it’s a great struggle all their lives. It’s really hard to take that hope away from those parents and I really don’t think any parent is intentionally wanting to cure adults or anyone but their own child and prevent autism. Sometimes, for some, it’s hard to see that far into the future and see a child who can do as well as many adults do with Asperger’s when their child has autism.
You also in some way must disconnect the autism from the child/ person, for they are much more than that. Some believe autism is what makes them, them; but many do not see autism in that way. Some believe autism took away who they had. If there ever was a cure, it would still be a choice, not a demand of all who suffer from it.
A campaign that seeks to cure and destroy (not sure where destroy comes in) is a hope of some that is not shared by all. Who has the right to say what one should hope for? If a person is HF, they wouldn’t need a cure. Some bodies hopes for their children should not affect another’s self worth and self esteem. people really need to separate whose hopes are whose. And to top it off, you have to find cause before a cure. Right now, all there is, is intervention. I hate to say it, but there are many more parents who really want a cure than there is parents who accept autism. The promotion of a cure is always going to be around, often more so offered with a high dollar amount. You have many more to fight than just Autism Speaks.
Because I spoke with adults early on, and had great advice from them. I never hid the word autism from my child. I left the word all over my house. When my son was able to ask why, I tell him I don’t know why but that every one in this world is different. His different doesn’t mean it’s bad. But because kids with autism do think differently, how things are presented must also be different. Because some parents are more fragile than other’s, the same goes for them. There is also no real true way to protect my child from al he’ll see on TV and hear. One day he’ll more ask about a cure. He’s already asked what God thinks of autism when my son makes ‘mistakes’. My son’s not so sure heaven will accept him.
Adults and teens with Asperger’s would be better using their resources to reach their younger generations. Help them to have hope through you. About 6 years ago, many with Asperger’s gave me that hope just from taking the time. Forget about cures and those who wants them, it’s not your hope nor is it mine.
Know why so many of us get sick of talking to parents?
Because they take. and take. and take. Then ignore everything we say that they don’t like with a dismissive “oh but you aren’t like my child”. At least that’s why *I* get fed up with it. Autistics DO SPEAK, and yet no one listens.
not one organization helps adults. There isnt the money. They’re all focused on the parent/professional axis. Screw that. There’s loads of stuff for parents. Not a thing for us, and then the parents expect us to act as Universal Translator pro bono.
In the words of the girl from Clueless…As if.
where I live, there is an Org that helps adults, not only with developemental issues either. this place however would be for those who are needing more help within the community.
it is often hard for a parent to relate to an adult, when their child is, well a child. I’m sure you’re not like my child, either. it’s also harder if that parent just heard the word autism. not sure what you mean by take take take. I suppose it also depends on what the focus is when speaking to a parent. not sure what the problem would be except for those who really want a cure more than intervention.
many parents out there listen, however if the idea is to change their minds of their hopes, forget it. that wont happen, at least not over night
There is nothing in the UK for adults with autism. It’s like autism leaves the building when the child becomes and adult. My own son has not seen an ASD related professional since just before his 16th Birthday. He will be 21 in July. There are no agencies to help him in any way. Because he has an IQ of above 70 he is just supposed to get on with his life. Seeing as a ‘cure’ appears to be the one thing that parents want most – surely it is a given that without one there has to be something.
I have quite a few friends now who are autistic but I would never presume that they are their as my A to Z on autism.
Take and take and take. Simple. They want free consultations. Over and over and over and over and over. I don’t see what part of that was so hard to understand. If a professional did 1/8 the consulting that people expect from us *FOR FREE* they’d be rich. Filthy rich. Many of us are barely scraping by.
If we talked to non autistic people the way many NT parents of autistic kids talk to us, they’d throw punches.
I hear you Kassiane can I just say that not every parent is like that.
I can fully understand how you feel because for what it is worth I think that adults with autism don’t even have a rough deal. They simply don’t have a deal. So why should those self same adults then be expected to give of their time freely to parents who have young children with autism. Answer is they should not. Maybe if society paid the autism community some respect things might change. I think that it would take a very long time. But there are some of us who do not take, take, take. I suppose really I need my adult son to be saying that here and not me.
Attacking an Org is done for free- why not this. I offer free legal advocacy to those who need it, and I offer my support to a ton of people and phone consults on my dime. I would never expect a dime in return. But then again, you’re only an expert on yourself, not all of the community so expecting to be paid a fee is hardly fair. I wouldn’t pay anyone for an opinion. I really think however expecting your attempts and actions against Autism Speaks will get you no where. Adults are not their focus, children are. The only ones who’ll look at sites against other sites are those like yourself. Typical parents of the world don’t even know who Autism Speaks is, let alone you. The only ones who care anything about it is us, parents like me and people like my son, and of course you.
I have met many on line too, who have Asperger’s and really wanted to chat not only about themselves, but about my child. They could offer me insight with words, where as my son couldn’t. Of course it was never going to resemble my child to a T, but it gave a momma like me something more to think about, to think beyond my own typical mind.
Making change in the world often consists of making an effort, on our free time.
The UK is much different than the USA in terms of many things. Many states here do not have much for adults and the states that do, such as where I live, a set of parents were the ones who started this place for adults. Unlike Autism Speaks, this is place for adults and that’s what their focus is.
I wish you all well in what ever your lives bring you.
Here’s the thing:
If people expect an on call autistic universal translator, they can pay a retainer. This is what I mean by take and take and take. “Ohmigosh you wrote in a book about teaching advocacy skills? Tell me in infinite detail about [insert private subject here]“. Any refusal is met with anything from a hissy fit to insisting my doctor in NINETEEN EIGHTY SIX was wrong. Not. Acceptable.
Thus, I fight the fight on behalf of current and future autistic adults, and am happy to work with autistic children and adolescents, but the parent/professional axis frustrates me too much to be worth dealing with. They want my help? Then they can help fight for my rights first. Otherwise, it’s utterly at my discretion what I choose to answer, or not, and in what “tone”.
it was a simple suggestion. you’re not going to get any where with Autis Speaks for many reasons, and they hardly are the ones that even matter in the whole picture of things. you can go about things any way you want, and it’s ok that you do but my thought was you may get more gratification in area’s you could actually make a difference.
I wish you the best
I bet you could get away with my screen name though.
Hee hee. http://www.NTismSpeaks.org. Feel free to use it if you are an autistic and would like to run another parody sight.
To the folks who would take the side of the Autism Speaks Big Wigs, we autistics sure wish that we could cure you of your ignorance.
Ignorance comes in many forms and for those who have an opinion to either side really have that right without name calling. My opinion is Autism Speaks is not the enemy and referring to ones self as NT when they have Asperger’s is partly ironic, but hardly comparable to those with for more debilitating Autism.
As much as you want compassion towards yourself and Asperger’s, you also need to extend it to other’s and what their dreams may be, which wont always match your own.
Parody sites are also hardly effective means to cure ignorance. Real change comes from real hard work.
Just be sure you leave out owned emblems and copyright material this go around. That’s what the issue was about, not the site itself.
Maybe we would understand if we knew what these wonderful things Autism Speaks has done, actually were.
So far they have thrown a whole wad of cash at research into curing a social and communication disorder. So say they do Isolate the gene, what next, do they start injecting living people and have human trials, any parent who is prepared to allow their child to be a human guinea pig deserves their children to be taken from them. Or is the plan just to supply abortion on demand if an uborn child has the gene, surely not every parent would even want the test so again this miracle cure they are looking for can be nothing but a white elephant.
They get so much money in donations each year that could be used to help people trying to live with autism, instead they use their lawyers to start legal action against an autistic child.
Autism speaks, well, it seams the Autistic aren’t allowed to.
Sandy said, “Ignorance comes in many forms and for those who have an opinion to either side really have that right without name calling.”
Who is “name calling?” I’m just stating the facts.
Rob said, “They get so much money in donations each year that could be used to help people trying to live with autism, instead they use their lawyers to start legal action against an autistic child.”
Well said Rob. I couldn’t agree with you more. I’m so sick and tired or people making money in our name, masquerading under the pretense that they are there to help us when they won’t even hear our needs.
Sandy, if you would keep an open mind and do some honest research into the autistic’s plight, there is so much that you could learn.
NTism ~ I am more full of research than you may know. I am sorry you believe people are “making money in our name”. Asperger’s isn’t your name, it’s something for whatever reason, you have, just as those who have Bi-Polar, ADD or maybe even Tourette’s syndrome.
I also don’t really need you to “cure you of your ignorance”. I have my own son and his father to help with that ignorance you believe I have.
I believe it is you that cant see beyond yourself and your Asperger’s to those less able as you who have severe autism to understand that no one is actually making money off of you at all. Your name is not autism and neither is my child’s name. I also like my child for who he is. A large part of my child is just any old kid.
This can only be about money in donations if that was the motivation for the copyright infringements, and I am really believing that was the motivation, more so than a simple humorous site created. The site had apparent real motivation to create a reaction from AS, since you never hear an OOPS, all there is, is ecuses for why it was created and you’re the one providing those excuses. Still, those excuses are not justified.
I hope it was worth the effort.
I’m autistic and Autism Speaks definately doesn’t speak for me. They’re not even trying to help autistic people! Compare Autism Speaks to other organizations designed to raise awareness about/bring assistance to people with disabilities. Look at advocacy websites for people with Down Syndrome. They are about acceptance, compassion for one’s loved ones, and about maximizing quality of life. But Autism Speaks is deticated to inspring despair, and describing autistic people as some kind of emotionless robots that induce homocidal and suicidal thoughts in our parents or something. I’m am completely baffled by how much hate is directed toward autistic people on so called “advocacy” web sites. It’s weird! There’s lots of people with all kinds of disabilities in this world, I don’t know why autistic people suddenly have to be the only ones to get blamed for everybody’s drama. Sometimes, it almost makes me want to tell people I’m something other than autistic.
Anyhow, I really think the word needs to get out there about how unethical Autism Speaks is, intentionally impeding other people’s freedom of speech. It’s just heinous. It makes me really want to get the word out so people can realize how extremist they are, and that their hysterical perspective is not the only way of looking at things, and that there are more moderate views.
Downs syndrome is a poor comparison. It has a known genetic chromosomal abnormality; autism has no known cause. Down syndrome child have also is a physical disability as well and a short life expectancy. By the way emotionless robots is a trait, many people and children have this trait as well as my son. You say it in a negative manner when in fact it is so true of my child and many more. The awareness should be for those emotionless children, only means they’re incapable of displaying it but it doesn’t mean they don’t have any emotions.
People who are blind would like to see. People who are deaf would like to hear. Children who can not communicate might want to as well. They may like to not have to live being afraid of lights and human touch or afraid of noises or under stand a simple emotion on my face. That may be their choice one day. One day my own child would have to think if a cure was something he wanted however I do not know one adult person knowing prevention for a disorder would not practice that prevention. The March Of Dimes has been trying prevention for as long as I remember. We know some things will cause disorder’s, so we don’t do it. Autism is no different for prevention. Autism Speaks video was the project of their daughter Katie, and it was nothing but a shock video and shocking it was.
But none of this has anything to do with the topic at hand. This wasn’t about freedom of speech. I suppose it’s also a autism trait to copy other’s. If my own child had better fine motor skills, maybe he’d have copied things as well
I think one thing that needs to be recognized here is that a 14 year old Aspie was offended enough by Autism Speaks to produce a parody website.
I think Autism Speaks would do well to ask itself what it does that offends so many people, and in this case, someone so young and impressionable. Is this the image Autism Speaks wants to prmote for itself? One that is offensive to kids and adults alike.
Frankly, my forum members tell me that the autistic community has HAD IT with Autism Speaks. We have been saying for YEARS that this organization ought to be put out of business. I only hope the media run with this story and that Autism Speaks goes away.
Why isn’t Autism Speaks responding to any of these comments?
It is clear from the way Autism Speaks behaves towards autistics who write to them asking them to explain themselves (like me for instance) that they are not interested in what we have to say.
How about Lisa Jo Rudy asking them if they would like to explain how it is they can persist in their agenda in light of the fact that the autistic community they vow to serve dislikes them so?
This is not news, by the way. From day one the credo we autistics have had is “Autism Speaks does not speak for me!”
Sandy said:
“Downs syndrome is a poor comparison. It has a known genetic chromosomal abnormality; autism has no known cause.”
I beg to differ with you. 137 scientists in 50 locations worldwide mapped the autistic genome in over 1,600 familes and found out that there are specific genetic variations for autism that are consistent among autistics.
This study and its peer reviews are over two years old.
Other studies have shown vaccines do not trigger autism, nor does lack of oxygen to the fetus, nor does mercury poisoning, etc. Autism IS genetic in origin.
I find most of your posts here to have a decidedly negative sound to them, almost as if you are defending Autism Speaks purely so that your own belief system can stay intact even though it has been scientifically disproven. No, I am not attacking you. Merely pointing out how you sound to somne of us here.
I am an aspie with an aspie child, I can tell you Autism Speaks does not speak for us! The big problem with finding a cure for Autism is that it is an impossiblity Autism is a disorder not a disease, You can cure diseases not disorders.
There are good organizations out there that don’t put down Autistics just to make themselves look good. Autism speaks as far as I can tell from reading there websites is just out to make money for themselves not to help anyone. Create a large organization collect lots of money and pay yourself big paychecks, the heck with the community you say your trying to help. Then sues a child calling them on their hypocracy, They are just showing their true colors
Tom ~ my comments towards Autism Speaks is on principle to this topic. If you has read any of my past posts over the many months (maybe years) my child’s autism has no known cause. After all the tests my child has had, and of all the links offered out there my child fits none of them right down to watching too much TV or overly large head size (interestingly, his father has an overly sized head). My child also was infantile autism, he did not regress, he just never progressed. But if I had to guess I’d have to say for him it is genetic. Although no family member was diagnosed with autism other than my child, on both side, we had odder relatives, including my mom. However when it comes to autism, genetics is one of the more linked studies out there, but as of today, we have yet to have concrete proof of any cause(s).
But this is not about what I believe the causes are, or studies.
I am not out for a cure for my child (I think I said that) but many more are and although that is not a hope I share, nor is the causes of autism (many argue genetics even though it’s my belief of my child and family history) Down Syndrome does have a known for sure unarguable chromosomal abnormality. Autism just does not. That is why there is an never ending debate.
But this is not about what I believe the causes are, or studies.
I hardly agree with much of what Autism Speaks has put out, some was good. I also do not like Don Imus. I think their both out for shock media. However I do disagree on this issue that it should all land on Autism Speaks, generally speaking. We’re all accountable for our actions. Autism Speaks also doesn’t need to be doing anything, they’re as rich as can be and could just be spending retirement in sunny Florida. I’m not sure why people take Autism Speaks so personal towards them, or have such high expectations of them and quite frankly, not one minute of my day is spent much on them within the autism community other than here, on this forum.
Separate issue from issue. Both sides obviously are at fault. Autism Speaks on this issue should not be the only one held accountable. that’s simply not fair no matter what I personally think of them as an Org. The only people going to find those web sites are those associated in some way to autism, the general typical public wont ever happen upon some parody site. To make a voice, to make a difference, that was obviously a way that back fired. Everyone has a voice and a right to opinion, but it would be better to find the most effective way to have an impact. All anyone will get out of this, is a vendetta against grandparents who chose to help put autism on TV, out in the front and right smack in your face while watching LifeTime TV (you know, once the boy finally goes to bed and all you want is to make it through this tear jerker and then they have to go and air the rates of child car deaths to the rate of autism. ruined the whole tear jerker movie) I also don’t agree with their commercials but hey, they do say autism.
Well the fact that no one in your family has ever been diagnosed with autism is a moot point, Sandy.
The Autism Genome Project proved that in a very small percentage of autistics, there is no previous diagnoses of autism anywhere in the family and yet the genetic markers are in the autistics DNA ergo regardless of whether previous diagnoses for others in the family exists, autism is GENETIC.
Now if you want to talk about Autism Speaks approach to autism which is not unlike Nazi Germany’s approach to the Jewish people in pre-WW II Germany, then let’s by all means discuss that. You see, Nazi Germany made lots of ‘nice’ propaganda concerning how Jews should be relocated and why they shouldn’t be allowed to be Jewish or to be in German among other claims and those educational tidbits were taught in school books among other ‘learned’ books.
Autism Speaks is dangerous no matter how you slice it.
I found this quote in a book: “[quote] … Care must be taken, at least in our nation, that the deadliest enemy is recognized, and that the battle against the enemy is seen as the shining symbol of a brighter day … [end quote]”
That sounds a lot like what Autism Speaks promotes in such videos as “What Kind Of World …” and in their propaganda materials that take aim at autistics.
What bothers me about this similarity is that the quote was from “Deutscher National-Katechismus” 2nd edition (Breslau: Verlag von Heinrich Handel, 1934).
For those who do not speak German, when the book’s title is translated from German to English, the “Deutscher National-Katechismus” is the “German National Catechism.” This book was approved anti-Semitic material for all German schools in 1934.
Had a Jew dared to write a parody of this book back in 1934, he or she would surely have been attacked for daring to insult the original authors of the “German National Catechism” and all ‘good thinking’ Germans who were seen at the time as only trying to help Jews relocate to another country where all Jews could be together as one people.
If you doubt this is fact, read up on it in the history books. This information can be found through a number of reputable sources.
How very sad to see that things have not changed very much in the last 70 plus years.
Many will argue the genetics of autism, and this quite off topic. My personal point was, for us the only answer is genetic and those who were autistic were never diagnosed due to the year they happened to live.
Now comparing Autism Speaks to Nazi’s is about the most offensive comment I have seen yet, and that’s not only because I am all German, either. Autism Speaks is not about murdering a race of people. Also, the only animosity I see is those against Autism Speaks while posting here.
Have you watched the video Autism Speaks promotes — “What Kind Of World …” ? In it you see quite clearly the words that state that Autism Speaks hopes to make autism a word that can only be found in the history books. Watch the video — it’s there. That’s about murdering an entire group of people — autistics — either through abortions or genocide.
And that, Sandy, is exceedingly offensive to those of us who are autistic and/or who are raising autistic children.
Why is it offensive for me to point out the facts about how Autism Speaks truly feels about autistics and autism but it is not offensive for Autism Speaks to try to ride the world of autistics? Hmmmmm?
Sandy most of your comments are highly offensive to autistic people.
If you have read the information autism speaks puts out or their wehsite or look at their information they are out to eradicate autism. Just like the Nazi’s were out to eradicate anyone that wasn’t like them.
I am Jewish My husband is German his mother lived in Germany during the Nazi regime Her father helped Jews get out of the country. The first time I showed my husband and mother in law the Autims Speaks website and some of their information My mother- in- law said, its Hitler all over again. This is comming from a german woman who lived there in those times. So your being insulted says to me you agree with Autism Speaks and that we should be killed. Maybe you should rething about what your insulted about and get the all of the information before you start attacking other people.
Main point autism is a DISORDER not a DISEASE. Disorders can not be cured, the only way to cure it would be to kill anyone that has it. It is genetic,and has been medically proven to be genetic. You really need to research subjects before you start speaking on them, and not believe all of the reteric you read from a source such as Autism Speaks.
As far as I can tell the only reason for Autism Speaks to exist is to make money for the people that run that orgaization, or ( and I don’t like to say this cause I hope it isn’t true), to destroy anyone with any form of autism.
You may want to look into aspergers syndrom for youself, reading your posts you have no empathy, thats what is supposed to be wrong with us. All of the folks here that have posted with AS or Autism have been extreemly empathatic, to this poor child being harrased by this large organization. You on the other hand have completely disregarded this childs feelings or anyones feelings with Autism, and are too busy taking the side of big business to find out the truth.
Go do some actual research and get back to me.
I am sorry for those who do not agree that the blame should not be all put on AS. I am sorry, but the principle is I do not condone breaking the law just because one has a disability and who they violated was an Org. they didn’t like nor a Org. I like.. It has nothing to do with empathy but common sense and a lesson everyone needs to learn. Also, the person plans to do this again and said so. It’s a vendetta and I would bet the next letter AS sends to this person will also go public, with intent. You’re all making more out of this I suppose to get as much mileage as possible against AS and I’m sorry I just don’t agree. The ones who are harassing are those here against AS and comparing autism prevention to murder, which is way out there and quite unfair regardless of how I also dislike AS. The ones without compassion are those who cant see beyond their own hopes to another persons and cant get past this issue. You people are the ones not gaining fact before making a decision, on this matter. Just because a person has Asperger’s does not mean their actions are automatically OK, as in point to my son’s father who could use it also as an excuse for the things he does. The only difference is in the real world, you get charged with an offense regardless of Asperger’s, as he did.
You all have a great weekend and I will stop posting on this topic since you all are determined to change my opinion than to simply disagree with it. You all can go on with your hate against AS without me.
This persons actions were not against the law. Parody is covered by the law, if not Saturday Night Live, Mad magazine and many others would have sued out of business long ago. Even Bill Mahr, he parodies and insults all kinds of big business, but he isn’t getting sued. Only the little guy, the people that have a difficult time diffending themselves against big business get picked on.
AUTISM CAN NOT BE CURED, The only cure is murder. It is a disorder, you keep disregarding that fact. And it is a fact.
I don’t thing Autism should be used as an excuse, I never use my aspergers as an excuse and I don’t allow my child to either.
Plan and simple Parody is not against the law. This was a Parody, and a frivioulous law suit that would have cost this childs parents a ton of money to higher a lawyer to fight, where as Autism Speaks has all kinds of money to file frivolous law suit and tie up our justice system, keeping true criminals on the street.
One last comment, and again I will state: You can parody all day long, that’s not what the potential law suit was about. Parodies do not include actual copyrighted material. Any one, including AS has a right to protect their copyrights. The more you minimize the site and actually what it contained, the more you add to the concept it was ok to do this.
Sandy from your first post you said you don’t know whether it was a copywrite violation or not, but you still keep defending Autism Speaks, makes me wonder whether or not you work for them. You keep saying you don’t believe in what they say but you defend all of there points. This makes me question everything you say.
If it was truly a copywrite violation there are other ways of handling the situation before filing a lawsuit.
You don’t know what the site contained, You are the one minimizing things. You still have done no research, but you defend Autism speaks, makes me wonder what your true intentions are.
I didn’t know if it was at first- I did see the site, yes it was copyright infringements-
I have never defended all AS’s points although I can understand how for some parents they are their hope-
What you’re saying is my opinion must be wrong due to working for AS? So who are you the attorney of the child?
It is not anyone’s place to dictate how anyone handles court matters. AS didn’t file a lawsuit anyway.
You’re making a big deal out of a letter of warning to the site owner, which that site owner I am sorry, was in violation and admitted they planned to do it again post number 34. They got a letter of warning and yet still plans to agitate the situation more. Using the excuse of Asperger’s for the reasoning is wrong when it’s clear it’s intentional. Isn’t the whole point of any intervention to help our kids be socially acceptable? Not to intentionally break copyright laws? All kids do wrong things, but they need to be taught otherwise or they’ll be constantly in trouble- and AS will handle it any way they please, as would anyone.
When I read post number 34, I wonder where is the parental supervision while a child is on the web? There’s a lot more trouble a child can get into than AS and copyright laws.
Since you are so hyperfocused on coypright and won’t listen to reason (and law) regarding the rights of parodies (note that the Autism Speaks logo is NOT copyrighted or a registered trademark but merely a pending trademark as evidenced by the ™ beside the logo), then let’s talk LEGAL MATTERS.
Is it LEGAL for Autism Speaks to promote genocide as it pertains to autistics and as it is spelled out in their heavily promoted video, “What Kind Of World Do You Want?”
Is it LEGAL to not only suggest, but to encourage persons who are the age of majority to help create a world where autism is a word found only the history books which can only be accomplished through genocide and abortion?
Parody is acceptable under the law; promoting murder is not acceptable under the law.
Additionally, you say you saw the original site. If that is correct, then you would know that the original site was not a mirror copy of Autism Speaks’ website and it was obvious to most people that it was most definitely NOT Autism Speak’s website but rather a parody.
I suspect that the site to which you oftentimes refer is the one that is currently found where two red arrows are drawn in. If this is the case, then you have no basis upon which to argue your point seeing that you did not see the original parody.
[quote from Sandy] You’re making a big deal out of a letter of warning to the site owner [end quote]
Yes, well most good people make a big deal about intimidation tactics especially where none are warranted.
The legal definition of intimidation when an individual or group of individuals or corporation intentionally says or does something which would cause another person of ordinary sensibilities to be fearful of future harm. It is not necessary to prove that the victim was actually frightened, and neither is it necessary to prove that the behavior of the person was so violent that it was likely to cause terror, panic or hysteria.
In this case, a 14-year-old was not only intimidated, but she was actually frightened and the actions of Autism Speak’s lawyers caused terror and panic in their victim.
THAT, my dear Sandy, is intimidation and it is ACTIONABLE under the LAW.
Doesn’t look like intimidation when the child outright says they’ll do it again. I see no frightened person there and if they once were frightened, they surely got over it rather quickly.
Are you insinuating I am not a good person because I’m not making a big enough deal or sharing your opinion?
I suggest scrolling around to other sites, interesting comments are all around, no need to just pick at me.
Have a great weekend and I hope you get this all figured out.
You obviously missed this part of my previous post: “It is not necessary to prove that the victim was actually frightened, and neither is it necessary to prove that the behavior of the person was so violent that it was likely to cause terror, panic or hysteria.”
In other words, if someone has been frightened in the past and is no longer frightened in the present, it does not negate the fact that INTIMIDATION was used against the individual.
And still you do not address the legality of encouraging others to MURDER a group of individuals — autistics in this case.
Should your silence in this regard be taken to mean that you support the message being sent out by such videos as “What Kind Of World Do You Want?” which is being actively promoted by Autism Speaks? Just asking.
Hope this weekend provides you with time to get this all figured out.
Sandy said:
“Now comparing Autism Speaks to Nazi’s is about the most offensive comment I have seen yet, and that’s not only because I am all German, either. Autism Speaks is not about murdering a race of people. Also, the only animosity I see is those against Autism Speaks while posting here.”
I find the comparrisson very apt and appropriate, and I am very happy it has been made. About time someone said it!
One of the things I have noticed about Sandy is she only reads what she wants too.
She is one of those people that only reads and twists the posts to be what she wants them to be.
The point completely missed is that Autism Speak doesn’t have a copywrite on their material. It is a pending copywrite, so no reason or grounds to sue. Therefore it was pure intimidation on their parts which could be taken as a threat which is illegal.
Sandy please take the weekend and research. Understand what your talking about.
My silence would mean anything you’d interpret it to be.
No need to say more when it’s an opinion pusher thread.
have a great weekend!
Getting back to the main point, nothing this girl did is illegal. I’ve checked this out with someone who knows copyright law. Autism Speaks’ lawyers would have known this, yet they apparently suggested Autism Speaks move against this girl anyway. So clearly, it would seem, their intent was to intimidate this child – or else there are some facts we are not in possession of here.
It backfired regardless. In an effort to suppress a 14 year old autistic child’s viewpoint from being heard, word has spread throughout the entire autistic community and also to parents of autistics via web forums, e-mails and meet-up groups. I have read chatter on message boards to the extent that contributors to Autism Speaks are now thinking of asking for their funds back. Some are writing their major donors.
Sandy said:
“My silence would mean anything you’d interpret it to be. No need to say more when it’s an opinion pusher thread.
have a great weekend!”
I don’t believe it is a “pusher” thread. I think it is just a bunch of well-informed folks who did the research and expressed their own opinions based upon the facts they uncovered.
That the consensus seems not to coincide with your opinion is just the way it is. Would you have us quieted the way Autism Speaks would have us silenced?
Other than the incredibly offensive manner in which Autism Squeaks promotes autism and those that are autistic as part of an epidemic and a disease process and parade around their whipping boys/girls as examples of how horrible it is for everyone around them, and that AS has the express purpose (if you carefully investigate what they raise funding for) of eradicating autistic people from ever existing in the future and to coerce autistics to appear “cured” by forcing them to act “normal” because they don’t conform, what really takes a lot of nerve is for them to say they speak for autistics, when in reality, not only do they not speak for autistics, they absolutely refuse to allow autistic individuals into any position of leadership to possibly affect their organizational message and what they intend and are accomplishing via their incredibly chicken-little-the-sky-is-falling PR that paints themselves as though if you don’t support them, life as we know it is going to end in the most horrible way possible because there will be too many autistic people and the world will go to Hell in a sea of nonconformity to their expectations, and if autistics aren’t tortured according to their desires to make them conform because their behavior is a horrible sign of their disease process, the world will be a place that is much harder for everyone else, where the autistic individuals they seek to subjugate are forced to make all the adjustments in favor of the so-called “normal” people that seek to make them over in their image, counter to the reality that their neurology and physiology is much the same for the differences in comparing dogs and cats, with dogs being “normal” and cats being autistics, where they see the cat as being a defective dog instead of just a cat being a cat, forcing the cat at all costs to the cat, even unto death of body, mind and soul, to parrot the dog, which is an unsustainable goal.
Yes, I’m an adult diagnosed with Asperger’s Syndrome 5 years ago; I got through college and well into a significant career in the computer field long before diagnosis, and was working in the field before the DSM ever listed it in the US. That does NOT mean, though, that I didn’t have the natural challenges that come with it, and I had to deal with it in the school setting in the special education section for my entire public education. What’s far worse than the challenges that come from my neurological nature of being a cat, is the actions and words of what people that would join Autism Squeaks and support their cause, because they’re also the perfect description of what bullies are: afraid to stand up alone and befriend someone, but quite willing and adept to subjugate and torment those that are different from them, largely out of fear and ignorance and just general pissedness and bad nature, where, oddly enough, they proclaim their the socially-correct and nice people because they associate with others freely in the human race, and pick on those of us that (for whatever reason) can’t seem to pick up on what they demand out of us: to conform to their expectations, with no reasonable thought on their end to even bother to meet us halfway.
Is it any wonder, then, that some teen on the spectrum should put up a website that’s a parody of their autism-eugenics organization, and take a well-deserved jab at them? To be perfectly honest, I’m tempted to put up a website that pokes them at least as hard, but because I won’t reuse their graphics, and it can readily fall under the parody/satire claims (I write software for a living, and other types of writing otherwise, so I’ve done a lot of research into copyright, trademark and patent laws) they can go to Hell if they try to take me down. Should I do this (and sooner or later I will, to prevent them from inflicting harm on me, and my immediate and extended family, of which an older sister of mine is also autistic, as is a nephew, and I have no logical reason to believe the family will not have more autistic members arrive, as autism clearly existed in my family (my Dad) long before vaccines and the term existed) they’ll have a heck of a time battling me, because not only do I have the legal knowledge required, as well as the technical knowledge, along with the ability to write very well, but I also have at least as strong of a passion towards providing balance of good information to their evil counterinfluence, as they’re hardly the first bullies I’ve had to battle in various ways, physically, mentally and spiritually. If you carefully evaluate what Autism Squeaks funds and speaks of as their goals and plans, it’s very clear they play into the fear and induced guilt felt by parents and those around those that are autistic in order to make their profits, which are in the currency of getting out their message and getting people to side with them, with no real concern for the rights and freedoms of those that are autistic, and to become the de facto authority for all things autism, including the institutional control of autistics and their parents, lest they bring out the big guns and start pointing fingers and saying “You’re not following our dogma, your cat must be changed and/or be taken away from you, and surgically altered or demolished!” with the threat that they ARE the law for all practical intents and purposes. This is the sort of thing that happened to my older sister: the system that existed in Michigan when she was a kid held the stick over my parents’ head and made them submit my sister to their institutional “treatment” at a county facility used for housing criminal juvenile delinquents and psych cases, where she was scarred for life from the mistreatment she received there, because “we are the system, the system is right, you do as we say, or we take away your freedoms and rights.” To this day, she is violently (and she’s not the violent type) opposed to the thought of ever living in a group home or any institutional setting, and I can’t blame her, and don’t want to see her lose whatever level of independence she has achieved and can hold onto.
Autism Squeaks is (at best) a horribly misguided organization, and (more accurately when you think of their actions and missions) more like that of the line of Hitler youth Corp (or whatever the exact name is) with a combination of eugenics, all neatly wrapped up in the politically-correct dogma of the time, much in the way Hitler accomplished so much with his evilly-used charisma-from-Hell. After all, wasn’t that what Hitler promoted: the perfect Aryan race, where everyone is according to some standard, and all defectives were eradicated (generally killed), and autistics certainly were part of that group (called “feeble-minded” commonly) which is (ironically) how Asperger’s Syndrome came about to being named, because Hans noted that this group of kids had some interesting characteristics, and had the combination of compassion and wisdom to figure out a manner to label them in such a way as to be seen as useful to have around in such an environment as Nazi Germany.
Just who are ‘Autism Speaks’ speaking for? Not for me and I am diagnosed with Aspergers (a form of autism), not for my son either and he is diagnosed with High Functioning Autism. So just who are they speaking for? What ‘Autism Speaks’ have done speaks volumes to those listening – obviously if ‘Autism Speaks’ doesn’t like what it hears it tries to silence.
Anyone wanting to sign the “Autism Speaks Doesn’t Speak For Me” petition can go here:
http://tinyurl.com/q4jpr
Autistics stim on a personal basis, and neurotypicals perseverates on a scale writ large: that’s called “fashion” and “fads” in neurotypical words.
Autistics get into an inertial state on a personal basis, and neurotypicals get into an inertial state on the scale of whole societies: this is exemplified by periods of history where the technology doesn’t change in a significant way for years to millennia.
Autistics may seem to demand that things be “just so” and assert their desires on a personal basis in a manner often described as a “tantrum”: neurotypicals do this on a societal scale, and try to force whole societies and groups of people with one or more common characteristics to do their bidding. This is often accomplished at the wielding of threats of violence, taking away some sort of freedom and/or property, and violent actions as well as enslavement of whole populations. The ultimate neurotypical “tantrum” is genocide and ethnocide, which happens in many blatant and more subtle ways, and is happening the world over as we speak in blatantly violent methods right now in many countries, and less physically violent manners elsewhere, often wrapped in a shroud of what passes for “politically correct” for the day.
Autistics often engage in echolalia on a personal level, where they may repeat something verbatim with little conscious reasoning behind what is said, and it may be part of a nervous response: neurotypicals do this with their constant assertions on a societal level that this group is wrong and this group is right, with no evidence to back it up, beyond what was said in the past: facts pertaining to the assertions aren’t researched.
Autistics tend to have sensory issues where they have a hard time making sense of sensory oversensitivities (everything comes through as though the stereo is turned all the way up to 11) or sensory insensitivities (can’t interpret anything coming in): neurotypicals do this on a societal scale for sensory insensitivities, and don’t notice when things are way too loud (real problems such as major crime and degrading morals and lack of common decency) and are overly sensitive to such things as some people acting in a manner that doesn’t rub their fur the right way, even though it causes no harm to anyone.
Autistics resist changing of environments on a personal, individual level, and tend to work towards keeping things the same: neurotypical society tends to resist disturbing the status quo, even when it’s something as evil as caste systems and slavery, and disenfranchising of various groups of people, and other things committed on a massive group scale.
Autistics are labeled in a manner that indicates that their behavior is all about the singular “me” of themselves: neurotypical behavior is that it’s all about them (a particular society or large group) and that’s called ethnocentricity.
All of these can be seen in American history by itself, but American history is not alone in containing these patterns: this is a commonality in the histories of most peoples throughout earth’s time and in their local places. The color of the skin and the languages and the names change, as do the times marked by the stars in nature and calendars of man, as do minor differences, but so, too, it all repeats itself over and over again, all over the place, much as individual autistics tend to repeat themselves over and over again, whenever and wherever they exist. This happened in Nazi Germany, with those that were labeled “feeble-minded” of which autistics certainly were categorized as such. This happened with the Jews, in one form or another: the details change, but the pattern (that neurotypicals have in the large scale, autistics in the individual scale) doesn’t seem to really change.
Those that fail to learn history are doomed to repeat it. Here are the steps for the sort of pattern that happens between the oppressor and the oppressed:
First, one group decides that there’s something about another group that distinguishes them.
Second, the first group determines that what distinguishes them displeases them, and they do more than merely think about things.
Third, the first group finds various ways first to try to persuade the second group to change and live according to their desires, which may not involve physical violence, and often starts with words.
Fourth, the first group rationalizes that those of the second group are defective because of their differences, and they must be “fixed” in some manner or other, typically via reprogramming.
Fifth, the first group starts doing their persuasion in a much more forceful manner, which may include imprisonment and brainwashing via whatever forms chosen. In essence, this is the start of rape of an entire group of people by another group of people, emotionally and otherwise. Rape is not something limited to or just about sex: it is about control.
Sixth, the first group sets to pigeonhole the second group by labeling them as less than human in some manner, such as not being fully human (remember the mention of US history? Slaves were considered only to be 3/5 people, in the words of the founding fathers!) and likely that they can’t be fully human due to such claims as they don’t have the same emotions, or no emotions at all.
Seventh, the first group puts the second group in some sort of cages, physically imprisoning them in a given area specified for all of them, or restricting what they can do and where they can go, and various forms of segregation.
Eighth, the first group decides to cook the pigeons (four and twenty blackbirds in a pie) and eat them alive (generally figuratively) and pronounce they’ve been their just desserts.
Ninth, it seems like poetic justice, but this tends to repeat sooner or later, with the first group now becoming the second group, usually after the original first group has fallen into the lowest part of the societal pride cycle and has reached their lowest point of being degenerate. If they’re lucky, they just might have enough of them left to rise again and restart the cycle as group one.
That leaves another interesting appropriate compare and contrast point:
Most autistics tend to remember many things from a far younger age, in far greater detail, and they’re likely to sooner or later act on them, more than most neurotypicals do, but… they do it on an individual level. Neurotypical societies tend to remember past wrongs or rights (perceived or otherwise) by another group over the span of many generations, and act on them as a society, and perseverate on them endlessly.
Autistics tend to focus on fine details, and not go for the big picture, or so they’re labeled as such: this is, of course, done on an individual level, whereas neurotypicals tend to look at the fine details to break things down, focusing only on their desired sensory data: they see that (as a prime example) that how they’ve labeled the various parts of the autistic spectrum are all about finding a way to pigeonhole autistics and segregate them in a way so that they can divide and conquer, and deliberately ignore the reality that we’re not nearly that different as a whole as we are individually from one to the next: if you’re autistic, whatever the label, neurotypical society will state “That’s just not the same, it’s completely different!” when there are in fact, more common realities than differences in the overall pattern. Kanner’s autism and Asperger’s autism are no more different than the range of neurotypical personality descriptions and how reality and information is processed amongst the neurotypical group; there’s a great variation of “normal” (aka “neurotypicals”) that’s still considered “normal” because they process information (body language, social rules, sensory processing, overall thought patterns) in the same manner as each other, and the reality is that Asperger’s and Kanner’s autistics are merely more distinctly labeled variations on the same overall theme: they’re no different for their “normals” in the overall pattern of the group as a whole (the autistic spectrum) as the “normal” group is different from itself.
For those that are more observant than the typical reader, and have something of a mathematical background, it should be clear as to why autistics seem to be such a threat to neurotypicals, and why neurotypicals shouldn’t be afraid of autistics: autistics and neurotypicals are exact reciprocals of each other, where the numerator and denominators are mirror images of each other: you multiply them together, and you get 1. If you remove one of the factors, the result is undefined or zero. Autistics and neurotypicals are the Yin and Yang, the black and white, the light and dark, and (it would seem to some) the good and evil, where which one is good and which one is evil is in the perception of the beholders.
Sandy, I see you feel very strongly, based on your posts, that you believe these things:
Asperger’s autistics aren’t the same as Kanner’s autistics
Kanner’s autistics are incapable of making their own choices
If Kanner’s autistics could make a choice about their nature, you insist they’d want to be neurotypical
You don’t see it being wrong to make that choice for them, and to force it on them when they have no way to communicate that that’s not the case, and even if they do try to communicate that, you will either not recognize it, or will do everything because “It’s for your own good!”
Based on at least one of your statements, you’ve clearly indicated that not all autistics are capable of feeling emotions, based on your observations. And yet, I’m willing to bet you ascribe emotions to most animals you commune with, such as all other mammals, in particular your pets or the pets of others that you know. Congratulations: you’ve clearly started down that slippery slope I’ve described, and you’re well on your Teflon-coated slide into creating Hell for others, or you’re in the process of it as you read this.
It’s claimed autistics aren’t able to empathize, but that’s not really true: they just have a harder time empathizing in a foreign language. Have you never noted the great affinity a lot of autistics have with other creatures that aren’t human? I’ve got some tales you wouldn’t believe, from both my first-hand experience, as well as that of others I’ve witnessed. The fact of the matter is that while neurotypicals label it as an inability to empathize, what’s really being said is “autistics aren’t able to communicate on an instinctual tuning the same as neurotypicals” and that’s considered to be disordered, because from the ethnocentric point of view that the neurotypical way of functioning is correct, we must be defective. I submit that from the other direction, you, as well as most neurotypicals, are simply incapable of empathy with autistics, and the evidence is how you describe our emotional states, or often describe us as not having any emotional states, because you’re simply incapable of understanding how to interpret our patterns of input and output.
You haven’t learned enough of history, haven’t focused on the larger picture, and are focusing on silly little details of no importance whatsoever, therefore being the equivalent of being face-blind over the notion that what’s happened before isn’t happening again: genocide in the making, in the earlier stages, where autistics are the focus. It has happened before (you really need to learn history better) and it’s happening again, so please open your eyes and perceive the reality without allowing all the other stuff going on around the world to push you into sensory overload when it comes to comprehension of the concepts being played out.
Like all oppressed societies before them that wanted to be left alone, and didn’t want to lose their identity and self and be murdered in that way before being murdered in other ways, autistics don’t want to be changed: they merely want to be left alone. If we were allowed to live in an environment that was harmonious with how we function, there simply wouldn’t be a problem in practice, because there’d be a better match. I advise you to visit http://autistics.org and read everything there, especially the writings of “low-functioning” autistic adults that, if you used an IQ test adapted to the reality that they’re non-verbal and treated them as though they had defective hearing and vocal chords, you’d realize that the term “low-functioning” and how “low-functioning” autistics are described is a fallacious way to group us: we are, after all, like neurotypicals, not simply all along a single spectrum, but rather we’re all on a multi-spatial spectrum of spectrums, where there’s an unspecified number of dimensions describing the location on the autistic/neurotypical spectrum, but there’s an overall pattern as to whether we’re autistic or neurotypical. Again, I remind of the fact that neurotypical people tend to hyperfocus on insignificant details of a given group, and simply not comprehend the larger picture, the societal/group gestalt.
I don’t believe that you realize that your tactics are that of a bully, and that of the neurotypical society at large is also that of a bully: bullies act out of fear and self-loathing and use all kinds of rationalizations for why they do what they do to other people. Bullies have this self-righteous nature that leads them to think that they can control and oppress others because they’re superior, and what they say should go, should go. I, as well as all others on the autistic spectrum, are painfully experienced with dealing with bullies, and we can’t seem to win – often. A large part of that is that bullies rarely have the fortitude to operate on their own wherewithal, and tend to draw in the pack and work in a herd mentality, dog-eat-dog to prove who’s top dog. To that, I say, who let the dogs out? (Woof Woof Woof Woof!)
History repeats itself. That’s one of the things wrong with history.
Clarence Darrow
US defense lawyer (1857 – 1938)
If history repeats itself, and the unexpected always happens, how incapable must Man be of learning from experience.
George Bernard Shaw
Irish dramatist (1856 – 1950)
Those who cannot learn from history are doomed to repeat it.
George Santayana
Spanish philosopher, essayist, poet and novelist (1863 – 1952)
History is merely a list of surprises. It can only prepare us to be surprised yet again.
Kurt Vonnegut
American novelist (1922 – 2007)
History, despite its wrenching pain, cannot be unlived, but if faced with courage, need not be lived again.
Maya Angelou
African-American poet, memoirist, actress, director, and civil rights activist (born 1922)
Can we get together on this? So many know the autism industry is just another profit generating machine, and real people know variety is desirable? Your E-mail(never displayed) is not my intent: I have campaigned for years (and been ignored) to point out that autism research is bogus, and I can indicate why to those who seek the truth! Here’s my e-mail gwynzkind@yahoo.co.uk but check this out;
Shame on you if you resist plain facts. Here’s one you can check easily: The word “autism” was used by Eugene Bleuler to label a stage of Schizophrenia in two papers in 1912 (US and Austria).
How does that fit with what the establishment wishes you to believe?
Actually, gwynltryn, the word autism was used by Beuler to describe something entirely different than schizophrenia in the beginning and then he decided to apply it to certain descriptions of schizophrenia by 1912.
The word “autism” was used as early as 1907 in correspondence between Freud and Jung uwho used the terms ‘autism’ or ‘ipsism” interchangeably when referencing Aschaffenburg’s definition of autoeroticism.
(Source: Freud, Sigmund, and Jung, Carl G. The Freud-Jung Letters: The Correspondence Between Sigmund Freud and C. G. Jung (William McGuire, Ed.; Ralph Manheim and R. F. C. Hull, Trans.). Princeton: Princeton University Press Press.)
Later on, Bleuler did not accept Aschaffenburg’s libido theory, and this was the reason for the amputation that produced the word autism from autoerotism in earlier usage. Bleuler then decided to apply the use of the word autism to mean forms of schizophrenia. Others in his field did not accept this use of the word and it was not cultivated as an appropriate term in medical circles when describing any form of schizophrenia.
In 1943, Leo Kanner adopted the term to describe the syndrome associated with difficulties of communication and social behaviors as accepted by the norm, as well as serious developmental disturbances of mental functioning.
He identified that the children whom he was observing and following were very much within themselves ergo they were about the ego — the self — and therefore the appropriate term was aut (from the Greek root “auto” meaning self) coupled with ism (meaning a distinctive doctrine, cause, or theory.).
His colleagues determined that his use of the word “autism” to describe those children he observed and followed who all shared similar behaviours was the appropriate term and it became a word that was used by a number of medical practitioners worldwide to describe what we refer to as autism in this day and age.
Autism, as Kanner interpreted the word to mean, is the theory of dealing with the individual detached from society as a whole and focused upon the self.
Ergo, Kanner’s use of the word autism as it is still used today is the correct use of the two words blended together.
Bleuler’s use was incorrect but served his purpose wherein his papers on schizophrenia were concerned.
It seems a complete violation to their name and reputation to intimidate a 14 year old child for starters. That this child has the diagnosis they are working to bring awareness to is another matter. They seem to be intrested in dollars and not people. people have Autism, and their feeling actually matter. Autism Speaks; a giant mega charity was hurt? Boo Hoo. It seems that child was speaking and Autism Speaks didn’t care about her voice, her condition, or her mental state. That sounds a lot like bulling.
Think about what you can expect from this organization when you see such vicious and greedy tactics! The whole organization was started by a dirtbag businessman. Autism Speaks seems to be tied to the interests that don’t want the causes and cures to be discovered. Hardly anything has been accomplished. Autism Speaks’ efforts show they are dragging their feet when it comes to the task of making necessary discoveries, yet they apparently remain the most prominent of such autism organizations.
And they use this intimidation of a child with no valid recourse. If only many other well meaning people knew about these bloodsucking vermin! They are pushing aside the search for the truth and for a cure, while consolidating as many resources involved in those searches as they can into their own clutches! Who could trust such pigs to exercise concern as a charity for an unfortunate group?
I’m 23. I was diagnosed with Aspergers when I was 13. I agree that Autism Speaks does not speak on my behalf. I feel that had I not had Aspergers I would not be the person I am today. I like the person I am today. The idea of a cure for autism to me is like the idea of a cure for being lesbian/gay and if such a thing did come along, I’d say no to both.
AS is a shill for Big Pharma.
I need Autism Advocacy. My son needs Autism Advocacy. We need help pursuing state legislators to ensure that people on the spectrum are eligible for affordable, appropriate insurance coverage; to ensure that laws are in place to protect those on the Spectrum against discrimination in education, employment, and housing; to ensure that law enforcement and medical personnel have adequate training, knowledge and resources to respond appropriately to situations involving those on the Spectrum. So if, in the due course of pursuing those goals, an advocacy organization stumbles, makes a mistake, and stings us as a community, I will feel the pain, and I will forgive it. Why? Because they are working within the framework of a world built long before Autism Spectrum. Because I would react similarly to protect my own identity, or my son’s if it was stolen. Because I would feel just as violated if a computer virus threatened my computer and the pictures of my son that are on it (regardless of the age, gender, ethnicity or societal standing of the author of the virus). And because I now know the full force that one of our advocates can bring to bear in our name. We are a broad, diverse community, with a wide spectrum of perspectives, beliefs, needs, and interests. We respect that in ourselves, and, if we desire the same respect from others, we should have the same respect in those who advocate for us. So I, for one, am calling out to them, to the world that doesn’t know our strengths, and our importance. And then, in the silence that follows, I am listening.