Whose Planet Is It Anyway?

Monday, January 21, 2008

Autism Speaks Silences Autistic Child

Quite often, Autism Speaks claims that it just wants to help autistic children overcome communication problems and become independent. So what really happens when an autistic child speaks up, and the organization doesn't happen to like the content of the child's independent thought? Well, in at least one case I know about, Autism Speaks proceeded to sic their lawyers on the kid.

This happened last week to a member of the Aspies for Freedom forum, who goes by the net nickname Kelly (among other nicknames) and is 14 years old. Autism Speaks got pissed off because Kelly 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.

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.

I don't fault Kelly in any way for giving in to the pressure; a young kid can't reasonably be expected to have the means to stand up to a corporate bully like Autism Speaks, after all. But if I ever get a letter from Autism Speaks' lawyers threatening to sue me about something on my website, I'm going to print it on my blog in its entirety, along with a response telling them to kiss my autistic ass. If they really want it all over the blogosphere (and, quite likely, the mainstream news) that they have a practice of filing frivolous lawsuits to intimidate autistic self-advocates, they deserve the consequences of that arrogance, and this is the only response they should get from any of us: "Go ahead, make my day."

EDIT: This story has now been "farked," which means that Autism Speaks is being ridiculed on Fark.com (a popular site for discussion of bizarre news stories). Also, here's a link to a new NT Speaks website created in response to Autism Speaks' bullying.



  • Did you know that autismsqueaks was not taken on blogspot.com? It is now...

    By Blogger Usethebrains Godgiveyou, at 4:30 PM  

  • It's a disgrace that this so called charity is silencing and attacking the people they are supposed to represent. If anything shows that autism speaks doesn't represent the well being of autistics, it's this. They don't care about autistic people; they want to keep them quiet and let the anti-autism bigotry speak. They hate anything good to come out of autistics because it makes their hate speech look like hate speech instead of a honorable cause to 'cure the devastating disease of autism', the image they portray to the general public. They are 'fighting autism on all fronts' here by preventing autistic voices to speak out to criticize their goals. Their goal is of course to rid the world of autism, not caring if content autistics who are also human beings are done away with in the process. Autism speaks makes me think more of a racial hate group than a charity. Sorry to hear this news on MLK day.

    By Anonymous Anonymous, at 4:40 PM  

  • It sounds like it's time for someone from a country outside of the US to host an AS parody website...


    By Blogger Club 166, at 5:28 PM  

  • Are you kidding??? I did not hear about this until your blog.

    The organization is afraid, clear and simple. Those who can't take the criticism from the very people they claim to speak "for," better seriously reconsider what kind of organization they are.

    If they cannot accept the parody or the criticism in order to be fair to autistic people who are so opposed to them (not to mention an entire contingent of disabled people who oppose such "types" of charity and marketing that literally threatens the existence of disabled people), then their actions SPEAK louder than words. At the very least, what they could have done is address the parody and have a discussion of why autistic people are reacting so strongly against them.

    Yet, they do not seem to be an organization that cares about the autistic people who have been so hurt by their actions. Instead of engaging and addressing, they wave their hand in a guffaw at autistic people, or worse, try to sue them!!?? What arrogance!

    Thanks for bringing this to our attention and kudos to Kelly for creating her parody site. I'm sorry she felt intimidated by them for speaking her own mind. She didn't do anything that no one else has done by parodying them or suggesting that there is an NT "syndrome." The whole point is to question. There is everything right with that.

    By Blogger Estee Klar-Wolfond, at 5:38 PM  

  • Satire is protected speech. Everyone knows that. The Autism Speaks lawyers must absolutely know that. What the heck do they think they are doing?

    This calls for some kind of protest against Autism Speaks. (Well, yet another one.)

    By Anonymous Anonymous, at 6:23 PM  

  • http://www.aspiesforfreedom.com/ntspeaks/

    Domains coming soon:

    By Anonymous Anonymous, at 6:30 PM  

  • This comment has been removed by the author.

    By Anonymous Anonymous, at 6:48 PM  

  • Surely you all realize that in this PC world laws only apply to the politically incorrect. In this case, this means that Autism Squeaks can say whatever they want, and take any sort of action in a high-handed morally-superior way, as obviously the long-standing parody laws are wrong-headed.

    Nothing but schoolyard bullies grown up to wear jack-boots!

    By Anonymous Anonymous, at 6:54 PM  

  • Guess who just purchased www.autisticsspeak.com and www.autisticsspeak.net? I did and if anyone would like to help recreate the site please let me know. ABFH has my email.

    By Anonymous Anonymous, at 6:58 PM  

  • I was copied on an email this same group of attorney's sent to Youtube claiming my Parodies/political speech videos on Autism Speaks violated their intellectual property rights. I quickly countered to Youtube that under Fair Use, as well as parody that I was in full compliance with the law and Autism Speaks' claims were frivolous.

    My videos stayed up, needless to say. I would love to poke them in the eye by recreating their website but I don't have the technical skills to do it.

    By Anonymous Anonymous, at 7:07 PM  

  • Any further legal threats from Autism Speaks should be met with utter ridicule, publicly.

    By Anonymous Anonymous, at 7:09 PM  

  • Very interesting...I worried about stuff like this when I posted
    this last April. Of course, no one was reading my blog at that time! But I was assured by an attorney that there was no legal problem with it.

    No, I don't have the skills to do what Kelly did, but I may work on updating this piece a bit for reposting.

    I look forward to the new parody websites and would be happy to contribute in any way I can.

    Frivolous lawsuits against autistic self-advocates? Bring it on, Autism Speaks, show the world what you really stand for. But bullying kids? That's really going too far.

    By Blogger Bev, at 7:52 PM  

  • Well, that link didn't work a bit! Sorry about that; cut and paste if you want to see it:


    By Blogger Bev, at 7:56 PM  

  • For once, I completely agree with you. Well said.

    By Blogger John Best, at 8:02 PM  

  • DISGUSTING. They never grew out of junior high.

    I'm with you: Bring it.

    By Blogger Neurodivergent K, at 8:06 PM  

  • If Kelly could give us a copy of the letter, we could remove her name and paste it on the parody site. That would be pretty powerful proof. Otherwise, those of us doing the sites will have to say "allegedly" or supposedly etc. to protect ourselves. Anyone know a workaround without a copy of the letter?

    By Anonymous Anonymous, at 9:39 PM  

  • If any corporation came after my child with bogus legalistic crap like that, they'd find they picked on the wrong child and the wrong parent. Grrr.

    This needs to be publicised far and wide, to let people know just what Austism Speaks is REALLY about. It's certainly not about speech, and it's not about autistics. It's about whiney parents who can't cope and raking in money.

    By Anonymous Anonymous, at 3:22 AM  

  • This is totally disgusting behaviour. Thanks for writing about it.

    Well done to Kelly for having the gumption to put the site up in the first place. I wish I'd seen it now. The bully tactics of Autism Speaks have proven where their loyalties lie, and it isn't reflected in their name.

    I think we should all post on this, get the message out.

    By Blogger Sharon McDaid, at 3:37 AM  

  • PLEASE post the letter. I think the best way to handle this is to give it lots of visibility.

    It just KILLS me that they bullied her into giving up that domain name. Maybe she should contact the EFF (Electronic Frontier Foundation):


    By Anonymous Anonymous, at 7:56 AM  

  • Totally flumoxxed! How could they be so stupid as well as not realise that this was a threat to a minor. Ah well, been there done that. Sheila Jennings Linehan threatened to sue a whole swag of people because we put a dent in her brand new career as the 'expert' mediator in ASD/NT divorce. There's just something about lawyers that's pretty sickening at times.

    By Blogger Alyric, at 8:42 AM  

  • Does anyone believe AutSpeaks when they claim not to have known they were dealing with a minor. I read the discussion boards there. I thought it was very clear from her vocabulary and writing style; I assumed from the start she was in high school. When she talked about getting beat up by bullies on a regular basis, a senior member of the charitable organization charitably suggested that this was more likely due to her, you know, "other issues."

    They knew.

    By Blogger Bev, at 10:53 AM  

  • I would put this on the radar of the NYT or any other major American newspaper or wire service. Heck, even try Yahoo! news if you have to. Just get someone in the media to pick it up...I would but no time today!

    By Anonymous Anonymous, at 11:00 AM  

  • This reminds me of the line used in limbo dancing, but evilly twisted.

    How low can you go?

    By Blogger Patrick, at 2:24 PM  

  • This is just mind-blowing...it's like something from The Onion! :-/

    If the site was up long enough, I'm thinking it might have been archived by the Internet Wayback Machine. It's not there right now, but the site states it takes ~6 months for anything they save to show up on the site, so that doesn't mean it isn't on their servers; they have instructions for finding out whether the site was saved, and a contact email address... It might be worth seeing if they copied it before it was taken down. Other cache services might have grabbed it as well, not sure.

    I personally think that a nice little avalanche of parody sites should spring up, as many as there are people to run them. (Including, if it's possible to track down the source, the original site.) There are several free domain hosts out there, so it wouldn't have to cost anything... ;)

    It might also be worthwhile to alert "geek" discussion sites other than Fark, particularly if/after other parody sites are written. I have to leave, but I'm going to hunt Digg & Slashdot to see if the original controversy has been reported. (I'm thinking that not only does it make Autism Speaks look bad, it might give people a chance to look at our side more seriously, rather than dismissing us based on what AS says...)

    My mother, being a big Oprah fan, thinks that everyone should deluge her with YouTube videos, email, letters, etc. to make her see the reality behind Autism Speaks, since she has been championing it. It might nudge her to take our side of things more seriously, possibly even enough to have some of our more articulate advocates & parents on -- but in any event, hopefully to make sure Autism Speaks itself isn't promoted again.

    Ack, gotta go...

    By Blogger Unknown, at 8:25 PM  

  • So if one donates money to Autism Speaks they are helping to pay the fees of some heartless reptile lawyers?

    By Blogger Lili Marlene, at 5:00 AM  

  • I wonder how the folks at Slashdot might feel about this (following on Moggy's suggestions)? An awful lot of the people there are on the spectrum...

    By Anonymous Anonymous, at 8:47 AM  

  • Guess who owns autismspeaks.eu

    The European domain name :)

    They forgot to register that one .....

    By Anonymous Anonymous, at 6:38 PM  

  • This actually got covered in the February 2, 2008 issue of New Scientist. I could send a copy of the full text if you like (since New Scientist hides their articles behind a paid registration wall).

    By Blogger codeman38, at 9:07 PM  

  • how about singerspeaks.org


    I'm not AT ALL knowledgeable about creating websites, but I can spew out ideas for parodies....even with names far removed from the intended target, but close enough so that we get it.....and people reading will eventually get it.......

    why the hell can't we sue them for false representation? How could they be a part of autism if they are not directly on the spectrum themselves AND they think they know it all........

    That Singer woman is nucking futs. really.

    By Anonymous Anonymous, at 10:07 PM  

  • Our organization has donated over $100,000 if you total the number of members we had that collected for the walk. Also my daughter has co chaired the walk for several years. We have had an eye opening experience when we found out the salaries these people are making. The walks barely support their staff so why am I busting my butt to pay them an outlandish salary. No more!!! We have decided not to do that walk anymore.

    Also, they claim that their community grants are for grass roots orgs. well guess again. They only donated to people that have a phd or are a school they didn't give their grant to any org that were run by volunteers and they gave their grants to places that had plenty of money to begin with and only effect under 50 children most were 6 10 or 15 we affect over 100 children.

    I also don't like the sensorship involved with the org. Our cheerleaders performed at the NNJ walk and we had to have their introduction approved, there was an interview list so if you weren't on the list you didn't get interviewed for the video etc.

    They have big bucks because of the Wrights so they can provide plenty of awareness other then that they are useless and a disgrace to the autism community. The paid employees (that don't have a connection to autism) are rude and have no idea about autism. They are not an autism friendly group and I for one will never be donating to them again.

    Also what is up with an org that wouldn't even look into the mmr shot theroy and almost disowned his daughter because of her feelings on that. Seems to me this org cares more about political affiliations and keeping the drug companies happy then really finding a cure by researching all possibilities.

    By Blogger differentgrandma, at 4:12 PM  

  • I have read that autism isn't a single condition, it's actually a wide range of troubles which come under the autistic umbrella. Asperger's, the wide range of severity of autism, sensory integration disorders, etc.

    By Anonymous Anonymous, at 5:05 AM  

  • www.autismspeaksisevil.comli.com

    I'm waiting for Autism Speaks to try closing that down quoting US law (I'm in the UK) when clearly nothing is being violated :D

    Pass the site on if you can!

    By Anonymous Anonymous, at 6:29 PM  

  • hi, great job!!!

    By Anonymous Anonymous, at 12:36 PM  

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