2/05/2011

Making it a War: Age of Autism Kicked off Facebook


Oh happy day, right? It appears that Facebook kicked not only Age of Autism off, but any page that has that phrase in it. A small group of autistic advocates on facebook set up a series of pages (some now gone in the sweep) and an event to lobby people to report Age of Autism's facebook page in an attempt to get it off. 


No, this is not a happy day. While I have no problem flagging posts that are hate-filled (the Bonnie Offit one was horrible), I did not lobby to have the page removed. I don't think they should be shut up. I'm not even, as long as it isn't threats or hate speech, in favor of censoring. 


They have the right to have a facebook page, whether I find them disagreeable or not. There are better ways to counter the damage AoA does than to attempt to silence them. Doing that just confirms their belief in conspiracy theories. On Autism Files "I love Andy" page, they're full on out into conspiracy that the small group of autistic advocates are being paid. Of course, on that page they're bashing Bill Gates, too, so we may not be talking about the most well-informed of folks. After all, Ginger Taylor thinks Bill Gates set all this up, Mnookin's book and Offit's; it's all conspiracy, people!




You can't do this, either. It's already gone. I'm guessing that Facebook handled the problem by simply sweeping all "Age of Autism" pages out; the only one left I can find is one set up by the main advocate for  getting AoA off of facebook, Please Boycott Hateful Groups Like Autism Speaks/ Age of Autism etc. If Facebook is taking action across the board, then this small group should also disappear.

Some folks at the "Andy's dreamy" page think that AoA's page is secret now, but the two bits from Olmsted above indicate this to not be the case, as do these couple tweets:


The rhetoric varies at the Autism File's Wakefield page (got the smartass out of my system) from stunned disbelief to the typical AoA stuff. Identifying information has been removed because this isn't about attacking people (it should be noted some of these folks are contacting the main advocate who attempted to get AoA off of facebook).


The comments go on and can be read over at that particular facebook page. People can judge for themselves. In the great scheme of things, they're not nearly as nasty as things were on the AoA facebook page or, for that matter, as what routinely gets posted at AoA.

Shutting the AoA facebook down  causes more problems than it solves.

It reinforces this particular group's identity as martyrs who are victims of a global conspiracy to shut them up because they're speaking the truth. Really, do we need to reinforce that for them? Let them speak loudly for all to see and hear. Yes, unfortunately, the research shows that merely pointing out myths make the myths more likely to be remembered as true, so there is risk here. The anti-vaccine groups do appeal to people inclined to believe that the government is an evil entity that routinely engages in wag the dog tactics. We can't reach those people. And we don't need to do anything that reinforces their delusional world beliefs.

We can contain that damage the anti-vaccine sites and fringe sites do, though, by working to ensure that accurate information is out there. And it's important to note that in some cases (perhaps more than we care for) that the best way to counter the misinformation is to not refer back to it but to simply provide the accurate information with appropriate emotional anecdotes so as to engage the emotions (whether we like it or not, reason alone is not enough).

For those people who are attracted to the idea that there is someone out there willing to heal their kids despite the cost to his career and good name, we can counter Saint Andy's appeal by having solid support systems in place so that parents don't feel alone. We can work to better educate doctors and diagnosticians to provide more support, better information and less doomsday proclamations. Don't send parents of newly diagnosed children home with a pamphlet and the horrible idea that their Suzie or Johnny will never leave home, never read, never have a friend, blah blah (in part because those things are unknowable in most cases and in part because it sets parents up for maladaptive coping). Send them home with the name and number of another parent who's already been there. Send them home with information regarding support groups and blog directories and the hope that with effort and patience, Johnny and Suzie will make progress, will improve, and that their story is not set in stone. Send them home with some stories of autistic kids who were severe in their early childhood but who overcame many of the obstacles and are doing well. Tell them that no one knows how the passage of time alone will change a child's severity level. It was not helpful to be told when Bobby was in kindergarten that the best we could hope for for him was a group home. It doesn't matter that this  pronouncement was accurate; that the reality is he'll always need help. We didn't need despair. We needed to know that regardless of functional levels, we could help our son build a happy and satisfying life.

The third thing that I believe is important is to distinguish between those individuals who are actively promoting falsehoods that they reasonably know to be falsehoods and those folks who are simply repeating those falsehoods. The first group deserves harsher rhetoric, but the latter do not. Daniel Gilbert has conducted research that demonstrates that we can't help believing what we read, see, or hear. It takes active, willful thought to reject what we hear or read, and if you aren't aware of this, you aren't armed and ready to constantly question and examine the information that you come across. You have to be willing to cut some slack and provide the evidence that counters the misinformation.

The most important point, though, that I feel needs to be made is that this doesn't have to be a war, and it certainly doesn't have to be a slash-and-burn, take-no-prisoners war, and that's what is occurring here. On that Saint Andy page, I can see that I have nearly two dozen facebook friends who like that page. I had over five dozen friends who liked the AoA page when it was up.The woo routinely feeds across my facebook feed from facebook friends. Do I actively seek out their pages and tell them how strongly I disagree with them? No. Do I insist they de-like the pages in question or we can't be friends? No.

I could. I could make my facebook page about only being friends with those who agree with me on arbitrary positions. That's everyone's right to do. And if someone really objects to my positions, it won't hurt my feelings if I'm defriended (not much anyway; some defriendings hurt a great deal, but those tend to not be from something so cut and dried as they were into woo and I'm not). Look, on our facebook pages, we have the right to not be offended. We have options. We can hide feeds. Heck, I find all the games people play rather annoying, so I blocked it where I don't have to see what you did in Farmville. If you need to block my feed to keep being my friend, that's okay. I won't know, but if I did, it would be okay.

I try to adopt an open policy on facebook that represents my position regarding the Autism Blogs Directory: inclusive. I've got reiki practitioners, believers in homeopathy, folks who are serious in their support of AoA and Andy. I'm okay with that. I don't need to attack them and I don't need to threaten them.

Age of Autism should get its facebook page back. It'd be nice if they dialed down the hateful rhetoric and the lies, but even if they don't, it ought to be back up there. 

It's important to make sure that in trying to counter people you don't take on the very attributes you were challenging as being inappropriate or morally wrong. I'd have written that it's important you don't become your enemy, but these people are not our enemies. If we see them as enemies to be fought, then we're right back to the war analogy and the inevitable dehumanizing of our opponents. And that is morally wrong.


20 comments:

kathleen said...

Excellent. I couldn't agree more. There are just too many who spend the majority of their time screaming about rights..forgetting that they also have responsibilities. I've been reading the number of threads pertaining to this-and am amazed. Having seen things like this before-I can say with certainty that we will read statements from the people who worked to shut AoA down like "All I want to do is help people and I'm being bullied" Once again taking absolutely no responsibility for their actions. If the same thing were being done to them-oh the ruckus that would be raised..I am thoroughly disgusted by this..and, can't help but wonder how much good could have come out of this if in their frenzy, they just asked people to counter the nasty..to write about it..to support other people. But then again, that would be work-that would require reading..and it is just so much easier to press a "like" button...

Nightstorm said...

Looks like AoA is strapping on those tin-foil hats again.

I am rather apathetic to this

Loving My Family said...

Wow, I hadn't realized that anyone was even petitioning to have AoA removed from FB. One has to wonder though, what with all the posting of ppl's pictures without their permission, if they were not removed because of FB policy violations?

farmwifetwo said...

They weren't only petitioning AoA but Autism Speaks.... does this mean that anyone can decide that since they don't like someone's POV that they should be arbitrarily banned??

That's the beginning of the end for free speach and I admit I'm getting tired of "people first" language, whether or not my views are PC enough and there are blogs that refuse to post comments of people that simply refuse to accept their POV on things.

We all have opinions, we've all dealt with things the best we can. Those opinions are valid even if those who think programs shouldn't exist or be different don't think that way. Harold and I argue regularly on ABA and residential facilities and we both have concerns about the new DSM V... BUT, at the end of the day we are the parents of our own children and we make those choices we think are correct for ourselves. Which won't stop us from disagreeing and it shouldn't. Both POV's should be noted and let other's make that choice themselves.

If AoA has overstepped than it should be removed or flagged for the appropriate agencies to deal with. Not a general banning. They aren't going away and Facebook just proved people are out to get them.

Corabelle said...

hmm I dont like this. FB has over stepped its bounds in so many instances... I do not agree with these groups, but they have every right to spread their "unpopular" views. I'm seriously thinking of killing my account in protest, No more social networking until Someone learns to respect both freedom of speach and respect our privacy. I do not like my information spread to every advertiser on the internet, And I really do not like this Idea that is building, that If somone says something you disagree with, you just ban them. sheesh. and we get mad at china for internet censorship.

Clay said...

Yeah, I'm getting pretty tired of war, (not that I ever had many dealings with AoA). I'd rather just avoid going there than to let myself get all upset.

Life in the House That Asperger Built said...

Beautifully said!

Marc Rosen said...

Facebook actually has a policy prohibiting hate groups. Given the bulk of the commentary on AoA's page, it very well COULD constitute a hate group under FB's policy, and have been banned for that reason, in which case it SHOULD stay taken down. I see no reason for hate groups to have a "right" to spew their filth on any private site, including Facebook. They DON'T have the right, since it IS a PRIVATE ENTITY, and as such, Facebook has the right to ban anyone they want.

C. S. Wyatt said...

Facebook is a private, for-profit company bound by legal concerns for the actions that might or might not be associated in a court case with the content of the site.

Many years ago, when BBS servers were dial-up and regional, my wife and I had a server with four modems. We posted, clearly on the login screens, that anyone posting threats, profanity, or other questionable content would be removed.

The laws vary by country. If Facebook has any hardware in a nation, any at all, they are under that nation's legal framework. It's a potential nightmare for a public company.

We cannot treat Facebook like a public square -- even it if is a virtual one -- because it isn't just a park in some American city or a quad on a university campus. It's a business with a legal web to avoid.

KWombles said...

I'd submit that the legal concerns that facebook has are outside the realm of my post itself. We don't know what led to AoA's facbook page being removed but note that other pages protesting AoA were also removed). For awhile there, all attempts to start new Age of Autism pages failed.

My concern here is the call for censorship because one disagrees with their position. Where they engage in over-the-line rhetoric that qualifies as hate speech (where they posted Skepchick's facebook photo and then wrote and allowed some truly horrible things about her, I posted, I tweeted and I reported the hell out of the thread), we absolutely should report.

Science Mom said...

I have to agree that it is disdainful that their free-speech has been hindered, although there are legal ramifications, as others pointed out. They chose to cross the line from 'activism' (a generous characterisation) to threatening. An entity such as Facebook isn't required to host anyone's agenda. I don't know why AoA just doesn't start a nice private forum for themselves.

chavisory said...

I would disagree intensely with any campaign to get the AoA page taken down, or Facebook's having done so, if the only issue were that we don't like their viewpoint. I agree, it only inflames conspiracy theorists and does nothing to improve the level or tone of debate.

But IF, like Loving My Family said (and I never really followed the page nor am I very informed about the controversy surrounding AoA, so I couldn't reliably say), the issue is their posting of people's pictures without permission and harassment that verges on threatening, then I think Facebook is entirely within reasonable bounds to remove their page.

KWombles said...

If they removed the page because of the Skepchic situation, that's reasonable, but they should have done it THEN.

If facebook doesn't explain and AoA is either too incurious enough to call and ask (and too tightlipped to reveal), then what we have is speculation.

My primary concern remains with individuals' calls for censorship because they disagree with the position. Let them speak and be hoisted on their own petards.

I guess, having had someone try to censor me by appealing to my employer to fire me this is a bit of a sore spot for me.

Liz Ditz said...

As I understand it, the FB pages were taken down by an automatic Facebook feature -- so many complaints, and down comes the page complained about -- or even the account.

I was given to understand that the AoA FB page will return -- possibly sometime today (2/5/11), possibly on Monday.

I agree with Kim's points. I certainly have complained about previous elements of the Age of Autism Facebook accounts, such as comment threads and particular images, but I strongly object to them being censored completely.

KWombles said...

Age of Autism has a new page up; https://www.facebook.com/pages/Age-of-Autism/183383325034032?ref=ts

They're trading insults, the AoAers and those advocates who spearheaded this crusade, trading in hate, and demonstrating the problem that hate brings.

There's no win here. No victory, but there is bile that increases with each attack.

Stag's tweets and Huff comments demonstrate the bile on that side:

KimStagliano Kim Stagliano
@
@BooksByTara Zoey is running a series of attacks on Age of Autism - very nastsy censorship. We are not amused.
53 minutes ago

http://www.huffingtonpost.com/chantal-sicile-kira/post_1652_b_816993.html

"Shame, if Chantal had uttered "vaccines" anywhere in this post she'd have had 1000 comments from 5 bloggers/c­ommenters who claim to be in favor of children's health. Where is the outcry and concern for our children's health when we talk about the harsh and stark reality of autism? Crickets chirp - exposing their agenda. Thank you, Jeremy and Chantal."

Bile. On both ends of this community.

Not support. No, defriending, harassing, and bullying of those who think differently. Kinda shows that the focus isn't on helping others.

Sigh. I'm going to spend some time reading folks who want to support others and reach out in friendship.

Sullivan said...

I wasn't able to follow this at all. But it is wrong to try to silence others.

Censorship is unamerican. Dan Olmsted wrote that today. And I totally agree. It isn't as though they have the moral high ground on this issue. I wish he could convince his co-editor of that fact. He and his co-editor know exactly what I am talking about.

Sullivan said...

I should clarify--I wasn't able to follow *these events* at all. I appreciate the post here explaining this.

I do not approve of censorship. Attempting to have AoA's site removed is wrong.

Remember, when an attempt was made to silence Kathleen Seidel at neurodiversity.com, Dan Olmsted and David Kirby made a public comment that this was wrong. When Arthur Allen was ejected from the "Green Our Vaccines" rally, Dan Olmsted told Mr. Allen that this was wrong.

When AoA is being abusive on their Facebook page, it is good an proper to report that to Facebook. But mounting a campaign such as this is not appropriate.

Age of Autism and their ilk will never go away completely. But they are losing their public relations war, just as their favored researchers failed in their research.

The views posed by Age of Autism are quite often damaging to children like mine. I have no doubt that disabled adults feel similarly. Countering (where did I get that word?) these harmful positions doesn't need to resort to censorship.

Anonymous said...

It's unfortunate that it's come to FB pages being removed, but at the same time, look at it from the *autistic's* point of view:

Like Rodney Dangerfield, we "don't get no respect".

Autistics are 'soulless', 'possessed by demons', 'incapable of love', 'beast-like', and an 'intolerable burden'. And *that's* just from 'advocates'!!!

Yes, ADVOCATES!

People like Portia Iversen - Founder of Cure Autism Now (now part of Autism Speaks) - who used phrases like that in her mean-spirited anti-autistic screed, "Strange Son".

People like Alison Tepper Singer, Senior VP at Autism Speaks, who said in their anti-autistic propaganda vid "Autism Every Day" that she wanted to take her autistic daughter and drive off the George Washington Bridge; the ONLY reason that she *didn't* do it was because she was worried about her NORMAL daughter!

People like Danielle Blais, who *murdered* her autistic son, and the people from the Montreal Autism Society, who took *her* side, telling the court about how much of an "intolerable burden" taking care of an autistic child is. Because of their support, Blais got a slap on the wrist, and when she was released, this woman - who MURDERED her son for the crime of BEING AUTISTIC - was HIRED by the Montreal Autism Society!

That's what WE put up with.

These 'advocates for autism' treat us like we're LESS THAN HUMAN!

So we get a little bit twitchy about people like Autism Speaks (they want to 'eliminate autism'; their method is to remove it from the gene pool) and Age of Autism (for whom autism is SO BAD, we have to stop vaccinating children - thereby raising the risk of outbreaks of *serious* contagious diseases - because 'vaccines *cause* autism', even though there's NO proof of it) start spewing their hate-filled rhetoric!

Like John Rambo said: "They drew first blood, not me."

And remember how he *had* to respond...

KWombles said...

Anonymous: your last two lines read as a threat.

If you read this blog you'll see I spend a lot of time countering both anti-vaccine rhetoric, and that I write out against Autism Speaks: how they spend their money, their atrocious PSAs.

I think you're barking up the wrong tree. And threats, implied or direct, are never appropriate.

Anonymous said...

Yes well - being harrassed by the person who set up the HATE AGE OF AUTISM page, does an injustice to others she is suppose to be supporting. This particular person thinks they are being a great advocate for pro vaccines etc, and constantly complains about being harrassed. however they fail to recognise they are acting the same way. If someone wants to delete me as a facebook friend because I don't join them on their hate campaign against Age of Autism - well then they are not a true friend anyway - then you wonder about "their" beliefs.

Someone acting like this needs to have thier own Facebook pages closed down. What they are doing is harrassment and bullying themselves. Surely they are not this ignorant, it's not like they havn't been told.

Anyway - Im glad to read here (even if we don't agree 100%) - that most people still believe in Freedom of Speech.