Friday, June 27, 2008

neurodiversity faux pas acknowledged: But will they learn their lesson

Well for those who have been following the Zach t-shirt saga, it seems that once again some neurodiversity proponents have made absolute fools of themselves for doing such a slip shod job of fact checking. Zach, put the following info on his web page:

Zazzle: Well we have recieved letters in the past from um ah Autism Speaks in regards to prodcuts withtrademark violations so when our um content management staff came across this product they believed this shirt was in the um past correspondence with Autism Speaks but uh they did not specifically call on this product, this was a decision by an employee from content managment.[...]

So apparently neurodiversity's latest cause celebre' turns out to be completely bogus. Zach did offer an apology to autism speaks for trying to turn this into a figurative federal case with no evidence whatsoever that autism speaks had anything to do with this. I am glad Zach acknowledged his error and I applaud him for that. However, will Amanda Baggs apologize for using this as an excuse to villify the organization she detests so much? Will autism bitch from hell print a retraction on her web page? Last but not least, will Alex Plank put an update on wrongplanet.net Alex seems to have a tendency to come to erroneous assumptions without doing any fact checking, like his assumption that most autistics are like him and don't want to be cured. I asked him publically how he came to that assumption but he still refuses to answer. I hope that this will teach Alex not to do such a slip shod job of fact checking as his web page gets a considerable amount of traffic. At some point such a shoddy job of managing a web page with thousands of subscribers may put him into legal jeopardy if he continues to engage in such irresponsible behavior.

I wonder if my new found friend, Emily, will write the retraction on her blog as she promised me, I hope so.

We will see if this is a lesson learned for those in the neurodiversity movement who have such an axe to grind?

Some will say that because the content manager of Zazzle sent Zach the letter he had every right to assume that the decision did come from autism speaks. Well it seems in this instance common sense was thrown out the window. It seems that many neurodiversity proponents are so bigoted they would not stop to think that assuming Zach's t-shirt did not violate any copyrights that maybe a huge multimillion dollar corporation would not deliberately threaten a bogus lawsuit against a small t-shirt salesperson. This should seem obvious. Of course I must take some cupability myself because I did not think of this until the following day, so I suppose I might have to put on my dunce cap and sit in the corner for half an hour too. But I did think about it the next day. I don't know if it was my blog entry that prompted Zach to delve further into the situation but I am glad it was resolved.

Somehow, I don't think these neurodiversity proponents have learned their lesson. They will make one too many mistakes like this and will get into some sort of trouble, legally or otherwise somewhere along the line.

I am reminded of the old Oriental proverb: The dogs may bark but the caravan moves on. I don't think most people interested in autism ever took the neurodiversity movement very seriously. Hopefully this new faux pas will make them look all the sillier. The caravan of autism speaks doing research in the hopes of finding a cure for this dreadful disorder will move on, in spite of all the barking dogs. However, it would seem that this new episode in the neurodiversity movement versus autism speaks will prove that it's bark is worse than it's bite.

17 comments:

pahsophist said...

Ah, and here I had come over to link to my retraction and you're already waiting for it:

http://pahsophist.livejournal.com/14872.html

I'm a bit upset I'm not on your list of the most vilified, Jon. ;P Alex, Amanda... I feel a bit left out.

I do want to x-post from that entry though the most important point, which I hope you'll permit:

"However, now is not the time for us to slink back with our tails between our legs, because change is definitely needed. We were wrong. But that doesn't change the fact that Autism Speaks' goals and philosophies do not address-- and in many cases even contradict-- the very community they profess to speak for."

Jon, I want to get your honest opinion, so please answer my question if you're willing: This whole situation aside, do you truly think it's right and fair for an organization that professes to help a particular group of people to refuse to involve more able individuals of said group in the organization? And I'm not talking about uber anti-cure militant nazi auties, I'm talking about people who are capable of rational thought and cooperative action.

I, personally, feel that is very wrong. This is why I object to the current status of Autism Speaks and why I try to advocate for change.

pahsophist said...

I should like to point out, however, that this situation followed not long after the whole "NT Speaks" legal threats. In that instance I did feel the site went beyond the bounds of Fair Use and did in fact violate copyright. However, the way in which Autism Speaks (or I should say, their lawyers) handled the entire thing was reprehensible. I wasn't angry about the fact they wanted the site taken down; I was angry about the demands. $90,000? Please.

And now, given Autism Speaks' behavior with the earlier situation, it seemed more probable, made more sense, that they had threatened a SLAAP just to get the shirt off the site.

In this case, we were wrong. And if another situation arises like this in future, I hope, like you have said, that we learn from our mistakes and verify all information more carefully and measure our words more thoughtfully before we write them.

But I don't honestly see how this makes us more foolish, Jon. Life is just a series of lessons learned; this was another hurdle and we should be stronger for it and more careful in future.

Many of the individuals in this ND movement are young and/or inexperienced in advocacy and legal issues. I think mistakes are inevitable, but this was certainly not a waste or something we should be ashamed of.

jonathan said...

ok, thanks, Emily, I look forward to reading it

jonathan said...

Hi Emily, I will try my best to address all of your points.

One, I did not address you in the most villified posts because it seemed to me that you took my points and seemed to be as interested as I was in getting to the truth. The others that I mentioned had no interest in investigating the facts. In fact I am still waiting for a retraction and apology from Alex who still choses to run this absolutely fallacious story on the front page of wrong planet for some reason, so I don't think you are as bad as those others.

Second point, it is your opinion that autism speaks does not address these goals or that people who feel as you do are in any way representative of the autism spectrum community. In fact quite the reverse. It would take too long to explain all of my reasoning, in just a comment post follow-up but for starters you can go to my web page at www.jonathans-stories.com and read some of my writings there, particularly my article "neurodiversity: just say no", i don't have the exact URL handy but you can find it on my web page. If that is not enough of an explaination I will be happy to delve into it further with you in a private email, you can email me if you would like.

In answer to your third point, if you are saying what I think you are then I agree with you. They should have input of autistic adults on their board of directors or some other form. The problem with that is, why should they accept people on their board whose goals are entirely antithetical to theirs. If you go to their web page you will see their stated goal is cure and prevention of autism. So why should they accept anti-cure autists on their board or in any controlling capacity. Pro-cure autists like myself are another story and I agree they should accept us and allow us to have input.

Bob and Suzanne Wright worked hard to get where they were and to acquire the capital with the goals of preventing and curing autism and to start an organization for that purpose. If the neurodiversity movement wants to form their own organization and acquire the capital to do something that is different than the purposes of autism speaks they are free to do so in this society of free enterprise we live in, but there is no reason they should expect AS to accommodate their goals just becuase there is ready made capital to be held.

I hope that clarifies my views for you on this issue.

jonathan said...

I did not read your second post emily and I will try to respond to that. No, autism speaks certainly has a right to protect themselves from copyright infringement whether you like it or not. I don't know anything about the $90,000 maybe they should have handled it better, I don't know. As you said many of these people are young and inexperienced. The person involved was only 14 years old as I recall, at age 52, you may look at me as an old foogey autistic, but I still worry about people so young being intoctrinated into this movement, also I seem to remember a youtube video with some 7 year old kid saying the same thing, his parents seem to want him to state some sort of script so that he will be loved only as an autistic person and not the special person that he is with or without autism. These activities and many others of the ND movement I so vehemently disagree with concern me greatly, so yes, I will continue to blog about these things time, and not having my disability interfering permitting and I will continue to take the ND movement to task when they make mistakes or exercise bad judgment in my opinion.

jypsy said...

I am reminded of this :"It seems you are giving me rather inconsistent information about
alex. First you say that he has Asperger's which by standard
diagnostic criteria at least in the u.s. though i don't know
about canada involves no speech delay and he was not diagnosed
until 9. Now you claim that at 3 he presented with a profile
that would more describe someone severely autistic. which is
it?"

Did you feel that you looked "silly"? That you made an "absolute fool" of yourself for your shoddy fact checking? I don't recall (and can't find) any public retraction stating that I did not then, (and have never in fact) given you "inconsistent information". I also can find no apology.

Are others to be held to higher account than yourself?

jypsy said...

Videos of Alex at 3 were not available to Mr. Mitchell when he made those allegations. However, he made some incorrect assumptions and chose to accuse me of giving him inconsistent information rather than doing some simple fact checking or even giving me the benefit of the doubt that I was being straight with him. I have absolutely no history with him or anyone that would cause him to think I was anything but honest.

jonathan said...

NO jypsy, not in the least. Based on what you were saying at the time I had no way of realizing you were talking about two different people. I explained this to you both in private emails and in previous posts on autism's gadfly, you can go back and read them, so no, it is not comparable at all, but trying to make these nonarguments seems par for the course for you.

jypsy said...

No, you absolutely had a way of knowing I was talking about 2 different people - the descriptions were so different you spotted that right away but chose to believe I was inconsistent rather than even ask why the difference. Why should Zach have known that Zazzle was feeding him a line? In the same way that you claim you had no way of realizing I was talking about 2 different people, he "had no way of knowing" Zazzle was lying to him. Based on past actions of Autism Speaks he was easily led to believe Zazzle was telling him the truth. I have no past action that should have led you to believe I was being inconsistent. It seems no amount of explaining of their (Zach, ABFH, Amanda) actions will satisfy you. I don't believe they feel silly either, or absolute fools, and I don't think anyone, you included, should. But at least they based their accusations on AS's past history. You based yours on ....?

Ender said...

Hello, I am new to your site and have a few problems with it. First, and most importantly, what do you do about those aspies and autistics that want to stay aspies and autistics. While people would have a great deal of trouble trying to force a cure on me (especcially seeing as how I am almost finished with college and will either be a sped teacher or a TAG teacher or preferbly both in a short time) what is to keep people from forcing cures on their kids not because the kid needs it, but because the parent does. In other words the kids high-fuctioning and gets along fine in the outside world but frustrates the parent so they decide to cure him. This scares the hell out of me, that parents could change their son or daugher that much. To me this would be just as bad as changing their gender or race.

Next, you seem to be under the mistaken impression that there are no positives to asperger's or any type of autism. For this I would ask you what I frequently ask Best to do, name me on prepuberscent NT who was published. Beyond that when there has already been a nobel prize winning aspie and a pulitizer prize winning ape since the autism epidemic began... yeah. Obsessions can lead to a great amount of good in this world, its hard to say where we would be without it.

I can't really argue with an autistic curing themselves. I can't really argue for a parent of a LFA kid curing him. But what happens when it not just them being cured? Oh and I also noticed you seemed to doubt that autistics would be aborted, though just about any disability is just look at Downs for proof of that.

Foresam said...

Autism Speaks has the same goal as Neurodiversity. The neurodiverse don't all see this since Autism Speaks is a bunch of liars.

AS disowned their own daughter because she was curing her kid. That was fine for Bob Wright privately but, in public, he couldn't stand behind it because GE, who he worked for, owned a thimerosal plant. So, helping anyone besides his own kid cure autism would be putting his thimerosal manufacturing organization in a very bad position.

That's why AS just throws away all the money they rake in on useless genetic research. They know they'll find some genes that are prevalent in autistic kids that play a role in susceptibility to mercury poisoning. They'll lie about it when they find them and say the genes themselves cause autism. This will help get the thimerosal manufacturers off the hook and no kids will be cured. So, AS has the same goals as ND, except for different reasons.

That's why AS allows all of the crazy ND's to infest their message board. They help AS sell their lie, that they don't know how to cure autism. That's why they keep throwing me out, because they aren't fooling me with their lies.

jonathan said...

also jypsy as an after thought i decided I will offer you a retraction in not understanding you were talking about the same person at the time. I apologize if I in any way implied that you were being dishonest. I apologize if I could have rephrased the question differently and asked you in another manner. I now know that Alex and your other son who has asperger's (whose name i don't remember) are different people and I offer regrets that I did not ask the question better or if I was mistaken in coming to a false conclusion.

I hope that retraction is satisfactory to you.

jonathan said...

Yes, I did, that is true, but you were still off topic and it seems trying to take a cheap shot at me which had nothing to do with the topic matter at hand. Also,I thought about what you said in the previous post and you can read my retraction and apology, i hope it is satisfactory.

jypsy said...

thank you.

jypsy said...

You should probably note that you removed a comment of mine that you were responding to

jonathan said...

yes, jypsy, I did, I have the right to do that if I think it is abusive or particularly offensive.

Anonymous said...

"This whole situation aside, do you truly think it's right and fair for an organization that professes to help a particular group of people to refuse to involve more able individuals of said group in the organization? And I'm not talking about uber anti-cure militant nazi auties, I'm talking about people who are capable of rational thought and cooperative action."

That sounds good if they're *capable* of rational thought and cooperative action *and* *willing* to help!

If they're *capable* of rational thought and cooperative action, but *unwilling* to help because they're taking the "don't care what other people think!!!" or "cooperation with other people is being a sheep!!!" or "just be yourself and don't worry about other people!!!" advice, then then I wouldn't expect them to want to stand up for anyone else's rights besides their own.

That's why I'm no longer surprised to see people with ASDs and speech ignore people with ASDs and without speech, a white aspie badmouth a black aspie's complaints about racist police brutality, a male comics geek be at least as sexist to his female comics geek classmate as their male football player classmate is, a straight immigrant be just as homophobic against a gay immigrant who migrated from the same place as the local bigots are homophobic against that man, and so on and on and on. Too many people easily cross the line from self-respect to self-centeredness...