Wednesday, April 02, 2008

Autism Awareness Day

Today has been designated as the first World Autism Awareness Day. You'll likely hear a lot about the topic today; CNN is devoting a day to a lot of coverage (unfortunately, some portion of it is going to be crap, for reasons I'll explore in a moment).

The image above is representative--like most awareness ribbons and images--of a view on autism. You have likely seen the puzzle ribbon. It implies that autism is a puzzle and that persons with autism are puzzle pieces. This is a pretty externalized view of autism. Ilse and I much prefer designs like the mobius rainbow above. They emphasize the neurodiversity of autistic persons, and the mobius imagery says a great deal about integrating autism into the spectrum of things that happen to peoples' brains.

As I've said in other posts, our son Bam-Bam has been diagnosed with a condition that falls on the autistic spectrum. The diagnosis is pervasive developmental disorder-not otherwise specified, aka PDD-NOS. I'm picky about the language I choose when I characterize Bam-Bam in a serious way; the "autism" label is applied to a broad spectrum of diagnoses, and that spectrum widened considerably in the 1990s when the diagnostic classifications were changed.

That change, along with an increase in awareness and improvements in screening and diagnosis, led to a dramatic increase in the incidence of autism. The figure of 1 person in 150 has been bandied about as fact; I'm not an epidemiologist and I have no particular axe to grind with that figure. I do have an axe to grind with characterizations of an "epidemic", and with attempts to explain the incidence that do not acknowledge the massive increase in reported incidence that have resulted from the above-noted factors. I am being kind when I say that those characterizations are deeply misguided and not rooted in science or a valid reasoning process. To be further kind, they are best understood as springing from the well of the aggrieved, or of those who would take advantage of the aggrieved. There's no shortage of this.

The other key takeaway here is that there are a lot of clinical diagnoses, ranging from crippling to inconvenient, that constitute autism. The autism label is not a single-size affair.

Another autism-related misconception is that vaccines cause autism. Senator McCain, who is not a scientist, caused a brief stir when he made a fairly strong statement to the effect that there is strong evidence of a causative connection (I'm still being kind--McCain actually said there's strong evidence that vaccines cause autism). He showed a spark of intellect when he backpedalled, presumably having received further scientific advice from person not best characterized as quacks.

There is no causal connection between vaccines and autism. Period. A parade of large and well-controlled studies has thoroughly dispelled the notions that preservatives in vaccines or vaccines themselves cause autism. As even antivaccinationists (who are, seriously, completely insane--they truly do not give a flying fuck if your child or any child dies of measles or pertussis, and actually deny that vaccines have improved public health, putting them in precisely the same category of mental health and reasoning ability as Holocaust deniers) acknowledge, the reported incidence of autism did not decrease after their pet preservative, thimerosol, was removed almost entirely from vaccines given to children in 2001/2002.

The evidence that people cite on vaccines and autism--usually in a frantic tone that kicks you in the nads, accompanied by a shrill invocation that your dumb ass would understand this if you had a child with autism--amounts to this: "I noticed that my child was autistic after s/he had his/her vaccines." Call bullshit on those who push a connection between vaccines and autism; remind them that it's precisely as demonstrable that diapers, teddy bears, and pacifiers cause autism. And piss on news organizations that insist on presenting this as a balanced and reasonable debate with two sides; it's as factually controversial as the Earth orbiting the Sun.

Another common misconception is that diets can cure autism. Autism tends toward comorbidity with a number of other conditions, many of which are gastrointestinal (there's an extremely high co-morbidity with celiac disease in particular). There's a tremendous amount of quackery related to this, and while it's great to help a kid with celiac disease or some other GI condition feel better with dietary improvements, it is a grave disservice to persons with autism to pretend that a gluten-free or casein-free diet cures autism.

In fact, let's just leave aside the notion that anything can cure autism, because the topic is depressing as hell. The best recent scientific work on autism is focused on genetics; the science of that, the mutability of genes that appear to be related to autism, is way too complex for me to discuss here, and my fundamental knowledge of genetics (unlike my fundamental understanding of medicine) doesn't give me the underpinning I need to cleanly sort out what's going on there.

Also related is the notion that maybe autism is a diverse condition, rather than a disorder, and that the best thing we can do for persons with autism is help them integrate, with reasonable comfort for all concerned, into a civilization that is not well suited to their integration. There are significant communities of adult autistics devoted to precisely this, and to helping the rest of us understand that they're not disordered, they're just different. My best hope for Bam-Bam is that he will function at a level that allows him to enjoy such peerage.

So, CNN, which is doing a day of "comprehensive coverage" on autism. Allow me to summarize: Larry King's guests this evening are Jenny McCarthy, who apparently went to the Google Medical School, and trumpets that her autistic child has been cured through his casein-free, gluten-free diet (it's plain from the evidence that she makes available that the child's tummy is feeling better, but remains as autistic as he ever was, and is developing along a path consistent with an autism diagnosis), and David Kirby, a muckraking charlatan (and dear friend of wackjob Arianna Huffington) whose money-making book trumpeting a connection between vaccines and autism has been thoroughly discredited (which doesn't stop him from manipulating evidence, misquoting, backpedalling, changing his pitch, hortating, and outright lying). Can't we just keep this kind of shit on Fox News, where it belongs?

Finally: I'm not a big fan of Pay Attention To My Cause Day. But as many of you know, this is a topic about which I've grown increasingly agitated of late. And I won't deny my ability to seize an opportunity. I have mixed feelings about the utility of Autism Awareness Day; there's so much misleading and downright harmful information out there, and it's hard for people to sort out, especially when the issue has no particular significance to them. Thanks for staying with my humble effort to help with the sorting.

And fuck you, David Kirby.

Update (6:15 PM): Holy shit, my wife blogs. Who the fuck knew?

Thanks also to my buddy Whispers, the astoundingly awesome Kimmah, and especially the suavely understated, Patrick Macnee-like, and very nearly famous bDr for the shoutouts.

Where the fuck are you, Sasha?


Kimmah said...

Every time Jenny McCarthy opens her mouth, she is setting back autism education two years. I am all for a passionate parent, but with more money than God at her disposal, it is disheartening (to say the least) that she has chosen not to research the matter and educate herself.

I wouldn't fuck David Kirby with Ann Coulter's hoo-ha.

As the mother of a child with mild, high-functioning Asperger's Syndrome (another form of autsim for those not in the know), I don't deal with the harder issues of communication and socialization that you, ilse and so many other parents (Jenny Frigging McCarthy included). There are many very vocal people out there who would insist that Asperger's isn't 'real' autism because our kids aren't different enough. I think they just like to discount Asperger's because it doesn't really fit in with the vaccinations-wrecked-my-kid/big-pharma-is-evil debate. Asperger kids have been visibly around for decades--we can all think back to the quirky kid in school that talked about Star Trek or hammers all the time. They didn't just magically appear in 1990 like so many parents want to believe happened.

The fact that explosion of dxs for autism-related disorders is directly attributable to the channge in the definition and recognition in IDEA is so BLATANT that only the most willfully ignorant moron could claim we're in the middle of some strange new epidemic a la AIDS. The fact that there is not one scintilla of proven scientific evidence that vaccinations caused anyone's autsim should also be enlightening, but pesky little facts just send the antivax moonbats into outer orbit. "Big pharma doesn't want you to know vaccinations kill childrend!" "Doctors are just covering their own asses by denying the link between autism and mercury!" Meanwhile, over in Amish land, where kids don't get shots and don't eat mercury-laden fish, little autistic children ride in buggies and shuck corn for no apparent reason.

Bam Bam is a lucky little muck to have you two in his corner and not some crazed mother who is so intent on 'fixing' her child that she forces him into a hyperbaric chamber or insists on chelating him with unapproved drugs and forcing him to only eat playdough and wheatgrass.

Excellent post.

Swami said...

Thank you, Landru.

As I see it, the main purpose of Autism Awareness Day is to provide simplistic cures my mother-in-law can latch onto and then wave in my face while saying "See? All you have to do is this and my grandson can be made Whole and Well and Normal!" So Cause Day does provide a service. Kinda.

whispers said...

I agree with everything you say except this: teddy bears can cause autism if they are evil.

Sasha said...

I was wading through the shit at work, looking for a pony. After arriving at home it took a while to get the boots off.

A few bits of briefness.

I'm terribly sorry that anything in anybody's life is sufficiently horrid that they end up paying attention to an anything day.

The anti-vac folks are another of my exceptions to my not-very-broadly applied anti-death penalty impulse. They should, at the very least, be isolated on an island with one another. And we should shift our Cuba trade policy to their island.

I agree with Whispers about the bears. I expect Stephen Colbert does too.

And this. Is one of the best thing you ever said.

"Also related is the notion that maybe autism is a diverse condition, rather than a disorder, and that the best thing we can do for persons with autism is help them integrate, with reasonable comfort for all concerned, into a civilization that is not well suited to their integration. There are significant communities of adult autistics devoted to precisely this, and to helping the rest of us understand that they're not disordered, they're just different. My best hope for Bam-Bam is that he will function at a level that allows him to enjoy such peerage."

I, in my little brain that moves everything to cloud-level think that this is just as true.

"Also related is the notion that maybe being human is a diverse condition, rather than a disorder, and that the best thing we can do for humans is help them integrate, with reasonable comfort for all concerned, into a civilization that is not well suited to their integration. There are significant communities of adult humans devoted to precisely this, and to helping the rest of us understand that they're not disordered, they're just different. My best hope for all children is that they will function at a level that allows them to enjoy such peerage."

And for those of you who aren't Landru (because he already knows), I am simply saying that we should want the best for all children, including the ones like Bam-Bam who is much less annoying than many.

Anonymous said...

hold the phone folks. CNN isn't devoting a whole day to jenny mccarthy or david kirby. they are two guests on the celebrity driven larry king live. Did you see the other 26 pkgs and two hour long specials that also are airing? Did you go to CNN.COM/autism to see the extensive coverage there? Did you go to and see the hundreds of people posting their own stories.

I love how everyone is a critic. And everyone thinks they know autism better than anyone else.

As a journalist, and a person with autism in my family -i am just happy that people are starting to wake up to the fact that autism is real, its not bad parenting, and there is no one size fits all approach to treatment, or diagnosis or care.

Please be patient with the rest of the world as they may not know this subject as intimately as you.

First comes recognition, then comes real change.

Trust me, I have fought tooth and nail to raise awareness for more than 5 years and I am just damn proud that CNN is at least paying attention.

Before you railroad them as being jerks and only focusing on people like jenny mccarthy, please educate yourself about what they actually accomplished today and the varied viewpoints they made available for all viewers worldwide to see.

Instead of everyone associated with this cause tearing each other up in the blogasphere , we should be focused on uniting to find the cause for this horrible disorder and helping each other weather the storm that is a life with autism.

Thats my two cents. I hope you post it. But as with other blogs that have hate filled speech-not sure you will be open to a view that is different than your own.

Sasha said...

Sasha linked to you but her sensibilities required a different moebius.

Landru said...

How very brave of you, anonymous, to pummel me with your concern without even the benefit of an online persona. And what fine straw constructs you have created.

I have, in fact, gone to today, and I have seen much of what you cited (I don't do a lot of actual television). What I said about CNN is that "some portion" of their coverage is going to be crap. The Larry King show fits that bill quite nicely, as you appear to imply (please feel free to correct me--anonymously if you must--if I mischaracterize your argument). I do concede that I picked on one of the parts that aggravates me--it's a blog, of course I complain about things that make me angry. Presenting peoples' unsupportable opinions that there is a causative connection between vaccines and autism--by which I mean acknowledging that there is enough substance to that discredited hypothesis that the topic requires "balance"--does, in fact, aggravate me (and many others whose families are involved in some significant way with autism).

I'll also say that I'm not all that impressed with the iReports. The triumph of personal anecdotes over science is a nontrivial factor in the tenor of feelings over autism issues, and while the iReports are certainly good journalism business and reflective of the very latest J-school buzz on participatory media, they're not particularly great journalism.

Your plea aside, it's pretty clear that I'm not impatient with people who know nothing of autism (true fact: I checked this blog's referrals stats today, because I was curious--I'm getting more hits than usual--and I got three separate referrals from searches like "what the fuck is up with CNN and autism today?"). I'm impatient with people who know something about autism and are too filled with actual hate and blame and self-centrism to know better. Yes, I do wonder how much good any amount of coverage is going to do a person who searches Google thusly, but of course attention that's not focused on some bogus presentation of balance can't hurt. As I made clear, it's the phony balance that's my concern.

I'll stop tearing up antivaxers when they stop accusing me of being a Big Pharma shill or a participant in a government conspiracy, ignoring actual scientific evidence, deliberately misconstruing and hyping legal findings, and manifesting pig ignorant conspiracy theorism about remarkably successful public health practices.

Feel free to show me where I claim I know more than anyone else about autism. That's some fine straw, there, anonymouse. I wave at some of the more complicated science--especially the genetics. Many (if not most) people living with family members' autism have it far harder than Ilse and I do--as I have repeatedly acknowledged in my posting on this issue. What on Earth are you talking about?

And please. What precisely, in your view, constitutes hate speech in this blog? I do hope that you'll come back to answer, although I'm not going to promise to respond. I only have so much energy for dealing with concern trolls.

Come to think on it, you'd probably consider my method for dealing with your ilk to be "hate speech." That aside, please do feel free to comment again, if you choose, and I do request that you at least make up some bogus nickname for yourself. It's obvious that I am not representative of an online community in which you'd feel welcome. But if you do have real concerns (ones you didn't make up because there's a corpse-fucking joke at the top of the page, or because you think Kimmah's refusal to fuck the actual charlatan David Kirby with Ann Coulter's vagina constitutes "hate speech"), then I do seriously hope that you'll feel free to answer--even if you know we're not going to change each others' minds.

Or, just go away. Whichever.

Landru said...

And actually, anonymouse, on a re-read? You're just completely full of shit. I suffer from this inability to remember exactly what I wrote 12 hours ago (the approximate span in between my post and my response to your comment), so my response was really way too nice. You are forcefully and deliberately mischaracterizing my writing, using carefully chosen inflammatory language designed to provoke unnecessary self-doubt.

I explicitly stated that I had mixed feelings about Pay Attention To My Cause Day. You deliberately chose to pretend otherwise. Bite me.

But I still don't delete comments, not even ones from concern trolls.

Sasha said...

I know it is your wont to be nice, Landru, but a poster who climbs on his high horse, claims to be a journalist, and condescendingly tells folks to educate themselves WHILE POSTING AS ANONYMOUS isn't worth the bandwith. And he is a pussy.

Sasha said...

And the hate speech is in the Ant Queen I'm guessing. Oh no. He couldn't read that so I'm clueless.

Landru said...

It is my wont to be nice, and I was nice, before I reread both my post and the troll's comment. I think its problem is that it just can't handle the word "fuck."

However, I must scold you, dear Sasha, for assuming that a condescending, presumptuous, self-aggrandizing twit is a male.

Oh, fuck it, even I can't carry that one off.

Kimmah said...

sasha said the 'p' word, sashaa said the 'p' word....i'm giggly.

i'm excited that ilsea blogged. it makes me happy. i actually coming here to tell you to pretty please ask her to do so.

Anonymous said...

Me too.
On the PDD kid. Mine is pretty awesome. And I'm tired of people making vaccine comments. It wasn't an f'ing vaccine. And I'm tired of relatives telling me I just need to spank my four year old. Cause that's not going to work either.
And it breaks my heart to think there's no way to be cured.

I'm surprised this is the first time I've seen this blog.

-Stef aka bob

Bob King said...

Do like I do. When you can't stand it any more, when you want to scream something rude and offensive - make a t-shirt.

It's like getting paid to be pissed off. Better yet, it's like getting paid to return the favor.

Of course, I also do it to illustrate blog posts, so follow the links...

Glad to stumble across you. Aspie Rage Fuckin' Rocks.

Anonymous said...

I will certainly come back to respond to you. I am not high and mighty. I am frustrated, as you say you are. My frustration comes from an opportunity for real dialogue about autism that i see presenting itself, through CNN, the UN , Autism Speaks and others who seized this day and tried with all their might to do it justice by trying to allow all viewpoints to exist, only to be vilified for doing so.

I am a journalist, but then again so are you. You are a communicator of information to tell a story, just as I am. I don't consider journalist a dirty word. I wish others didn't either, but oh well.

A little about me, My niece is autistic, my cousin's child is autistic. And they are on different parts of the spectrum. And my heart aches for their families, and the hopelessness I feel in being unable to do more to help them.

What makes me frustrated about this discussion, and not singling out your blog, but instead raising the question about the whole discussion that exists about autism is this. Why are people so angry at each other when it comes to this topic? It seems to me so futile and counterproductive. Yes there are people that believe vaccines caused their children's autism. And there are people that dont believe it one bit. But i really think there has to be some sort of united voice on this topic if we are going to get the research dollars, and changes in the govt structure that we need to start helping families that deal with this on a daily basis.

I can't make people stop sniping at each other. I can't make you understand how hard I have fought within my own organization to make it give a damn about this. But i come to your blog merely to make the point that this day was not just about jenny mccarthy. And i wish that could be acknowledged.

It makes me hurt to see all of these beautiful children have to go through what they have to go through, and realize we are not really any closer to finding out why.

And it makes me scratch my head when the networks do finally start paying attention and yet everyone on line is still angry about how the coverage wasn't what they thought it should be.

your blog isnt the most angry, as you mentioned there are many more that go much farther, but i have tried to post replies to many of those blogs today, only to be filtered out. and the only comments they have posted are the ones supportive of their own viewpoint.

I appreciate you allowing my posts to go through no matter how much you may disagree.

I post anonymously because quite frankly -i would likely get in a great deal of trouble with my employer if i posted my real email alias. And i don't really relish the idea of losing my job.

like i said, i truly believe change starts with awareness. And i thought today went a long way to raise that awareness.

And since your site pops up when you do a google search about "world autism awareness day" I wanted to read what you and others thought of the effort.

it was then that all i see( on many blogs -not just yours) is jenny mccarthy bashing, and the real message of the day is swallowed up by the contempt people feel at the mention of this woman's opinion.

I want to get help for autistic children. And i think that comes when we unite to spread the message to do something positive in this fight. That is the purpose of me commenting to you.

Landru said...

Thank you for responding, anonymouse. I have a few points, then I'm done with this.

-There is nothing magical about allowing all viewpoints to be voiced. In a discussion about the Earth's shape, no one gives any credence to a flat Earther. I believe that the media do not understand the magnitude of the evidence against vaccine-related hypotheses, or how inappropriate it is to pretend that this is a reasonable point with room remaining for discussion.

-The magnitude of that evidence has come from a lot of research money. The continued hype about vaccines, based on ghosts of wisps, badly hurts efforts to gain funding for legitimate research. Antivaxers continue to insist that government-funded research on vaccines is flawed (by pharma ties, by some unnamed and gigantic government conspiracy, by the very theories that underlie public health themselves). That is not a rationally sustainable point of view, and their clinging to profit-driven quack medicine is completely inconsistent.

-Peoples' belief that they alone understand what happened to their children is understandable but badly flawed by observational bias. That's not what science is made of.

-If you've done any reading on this, you should probably understand the source of the anger. Antivaxers uniformly engage those in favor of science on an emotional, gut-punching basis, hurling ridiculous accusations of ties to pharma, proclaiming that those without autistic children have no legitimate voice in the debate, and vilifying those of us who have autistic children and disagree. It's a lot like every other heated political debate--and it is very much a political debate. Those of us on the other side think that antivaxers are lunatics. The objective evidence is that we're fairly close to correct.

-My employer doesn't know that I blog, either, and while Landru isn't famous and doesn't want to be, my employer hasn't connected me to Landru.

Thank you for coming back when you took so many gut punches in the wake of your initial post. Whether or not you noticed them.

Steven said...

While I am no expert on the subject, the reasoning that most people use for causality is quite simple

My child had no signs of autism.
My child developed signs of autism after vaccination.
Therefore, vaccination made my child autistic.

This is a simple if A and B are true, C must be valid argument. While I do appreciate the simplicity of this logic, people need to really research and understand points A and B before concluding point C to be valid.

So, my point of this little exercise is really to say thanks to Landru for taking the time to research his point of view while being open to others commentary.

One last comment: Who are "Awareness Days" really meant for? Aren't those with "disabled" children already aware?

Bob King said...

Steven: Being on the spectrum myself, somewhere in the vague lands between Asperger's and Kanner's, I take great delight in answering rhetorical questions.

Why do "awareness days" exist? For the same reason Valentine's Day and Mother's Day Exists. To extract money from those who would feel they had not properly performed a social duty.

But it's a pretty good time to seed the amazing flood of saccharine crap on Cafepress and Zazzle, with the real goal of getting people to actually glom the idea, maybe wear a t-shirt, or slap a bumpersticker on a car. Of course, thanks to the SEO placement both firms do, keyworded designs turn up in ALL the searches for Autism Awareness.

Pardon my perseveration. It's one of my more enjoyable ones though - and like I've often said, it's the best way to get permissioned graphics for your site, even if you never make a dime. (And more results for the moebius graphic are needed. Many many more. I've seen them on Cafepress but so far not on zazzle, except for my own, not quite right one.)

Anyhoo, the real problem, and the thing, anon, that drives ME bugfuck, is the fear-mongering and the outright hate-speech coming from the "curebie" movement.

The panic panic fear fear "your child is broken" rhetoric serves no real good save to line the pockets of notorious quacks and the owners of dubious "residential" programs.

Oh, and ABA. Do you know that with some firms, you don't even need a high school diploma to be a "certified" ABA trainer?

Now, behaivior mod works. That's the problem with it. It's a power tool, and you don't just play with it casually in order to, say, train your child into shuddering compliance with public displays of affection.

I've had some interesting run-ins, for instance, with Lennie Schaefer and his sock-puppets over the issue of ABA, which I frankly consider to be of extremely limited use, potentially as damaging as a whole syringe of elemental mercury and most importantly - a way of imposing upon an aspie/autie a filter of "appropriate communication," rather than accepting the communication that exists.

I mean, what part of "flap flap flap AAAAAHHGGG! don't you understand?"

If your dog acted like that, you would know they were distressed. You would give them a squish and take them out of the environment.

Granted, it's inconvenient, but look at it this way - given the fact that you have an autie/aspie five year old, the odds of them becoming an NT teenager are pretty much nil. I see that as a GOOD thing. :)

Casdok said...

Good post and very interesting comments!

Kimmah said...

"what part of "flap flap flap AAAAAHHGGG! don't you understand?"

Best quote of the year...this should be the slogan on ANY shirt for Autism Awareness Month, lmao.

Sam, while almost disturbingly normal in appearance and behavior (thus interpreted by the rest of the world as either spoiled rotten, really weird, or just annoying at times), gets overstimmed very easily and those hands go nuts...more waving than flapping, but still very autisticky. When the hands come out, we go out.

Bob King said...

If only more parents had that sort of plain common sense. And yes, soon to be a t-shirt!* - please check in a few minutes!

BTW, comments on some of the more annoying designs found in other stores under keyword "autism awareness" might help spread a clue or two.

Bob King said...

And here it is... with a few seasonal adjustments. Feel free to link to it (there's a "link to this" link") and the option to link just to the image. That's fine by me. :P I'm hoping someone gets a real fine rant out of it. :P

RealAnswers said...

Autism has been flourishing since 2000. Cell phones have been flourishing since 2000. Cell phones emit microwaves. Microwaves affect the brain and the fetus. Put down your phone and don't stick it next to your brain again. Take that phone off your waist if you're pregnant. Take it off if you're not. We cook food, not people with microwaves. I think there are some new questions to ask for Autism Month.

Try putting cell phones and microwaves and health into google. Try putting microwaves and autism in. Try cell phones, microwaves and cancer. Search on YouTube. It will make you sick.

Microwaves are not only emitted by cell phones, but also by cell towers. They make our wireless internet possible. We are all paying.

Kimmah said...

Windows 2000 has been flourishing since about that time, too. THAT'S the connection....damn Bill Gates and his evil empire.

FTR, my oldest child--born in 1993--has almost the identical characteristics to my younger son, born in 2000. Oldest child doesn't fall within the Aspergers spectrum, but he is borderline. What would have caused HIS issues? Cyclonic vacuums? They were invented then...that Dyson guy always seemed a bit fishy to me.

Landru said...

Real Answers, you're a complete fucking wackjob. What the fuck is this, Test Landru's Principles Day? Go away.

Steven said...

"bob king" and "real answers", sorry but both names lend themselves to pseudoporn identities, please for the love of whatever supreme diety to which you subscribe...SHUT YOUR FUCKING PIEHOLES!

Manlove of landru aside, stop perpetuating flat Earth ideals and move onto something more important. I hear that the smallest black hole was found (and yes, I do work for NASA) and it was still more accepting of reason than your self-indulgent rhetoric. the ever so simple, yet eloquent words of my dear friend, Landru...GO AWAY!

Sharon said...

Oh what fun this thread has been! I enjoyed the post too.

I just want to comment on something else the anonymous journalist wrote;
"Instead of everyone associated with this cause tearing each other up in the blogasphere , we should be focused on uniting to find the cause for this horrible disorder and helping each other weather the storm that is a life with autism."

I have an very autistic child. Given the way society is set up, he is disabled by his limited speech and his unusual ways of perceiving and dealing with the world. But he does not have a "horrible disorder"! Life with him is different from what I expected of parenting, but it's bloody great. I just deal with the differences.

Autistic people like my son deserve the highest standards of science and ethics in research. The crank theories only cause harm. That is why many of us loudly protest the attempted take over of discourse on autism by the anti-vaccine cranks and dodgy science treatment proponents.

Bob King said...

Steven: I'm perseverating. Cope.

Addendum: People who use the term "Psudoporn Identities" and hide their own profiles should not claim to work at NASA to prop up an argument from authority.

But yes, in fact if you have seen the name "Bob King" associated with "art-core" porn images, yes, this is me. I'm proud enough of it to look you straight in the eyebrows and bluntly ask what point you might have been trying to make.

I know what points I try to make with my images. It would be interesting to see how far from the mark you fall. So, feel free to ask, dear boy. While you are at it, please explain your usage and understanding of the word "Psudo Porn." Because, well, I though I actually WAS "talking/graving (about)(prurient) sex." Quite often it's directly about the perversion of prurience. If you think that's an implied insult, look up "prurient."

I'm taking bets you ought to be insulted. Were you aware that being offended while staring at the sexuality of others is in itself a paraphelia?

Now, to the issue of t-shirts, an issue you also apparently associate with, presumably, neurotypically crass motives.

If you will parse my posts, you might note that if I were particularly directed at selling t-shirts, I would do it very differently. This is not lack of marketing knowledge, it's quite deliberate.

My goal is to get the right messages on the t-shirts walking around in the mall. You are invited to play. It's fun. You might just make enough to buy a six-pack of cheap beer once or twice a month.

And even if you don't sell any (I've sold very few,) they have to go by MY design and realize that the "puzzle piece" or "puzzle ribbon" is not the only perspective. And since the curebie moms are out there cranking this crap out on an hourly basis, I could really really really use some help.

Part of my reasoning is something Randi Rhodes said to a caller who whined, "but what can I do?" - protesting they were too busy to become involved in politics.

"Wear a damn t-shirt!!!" Randi literally yelled. She then spoke of the fact that on a typical excursion to a typical mall, that t-shirt would be seen by something like a thousand people; so over the life of a t-shirt and given the habits of the wearer, several hundred thousand sets of eyeballs might see that t-shirt.

The message is validated in our materialist culture by the fact that you gave enough of a damn to buy the t-shirt and wear it.

So you can do something that matters simply by wearing an ad - or by making ads that people who will actually voluntarily go out in public will wear.

THAT is my point. It's something we can do to counter the curebie media machine without having curebie resources or NT networking skills.

If I cared about money-making, I would not have made my best "unpuzzled" graphic copyleft.

One example of what you could do with it is here. Want full resolution copies? Ask me, and tell me if you prefer png or photoshop format. I'll get download links set up as soon as I can, in my copious free time. But if you feel that supporting my efforts and promoting this design is a good idea, you can become a Zazzle associate and make 7% commission or you can just go to any design you like, find the right size, and get the code to link to it as a sidebar, or a blog illustration.

I made it copyleft so that you can include it in your own blog graphics and then use it to create "blog loot" with any service you care to bearing your url, so that people KNOW where to get an informed perspective.

There. Am I aspie enough for the room? :P

Steven said...

Sorry to have offended you Bob, but this is not the place to hash this out.

Two things before I bid you adieu...

1. Do not talk about hidden profiles when you hide yours. You lose points for that.

2. Your "word of the day" calendar vocabulary is impressive, but far from insulting. I would have to care to be insulted.

Adieu BK

Landru said...


I asked you this privately, and you didn't respond except to post two more times, so I need to say this in public.

You are most emphatically welcome here. That said, please don't advertise in my comments section. I'm happy for you to link to your blog with your signature, but this is a low-traffic blog, and while a lot of what you have to say is interesting, relevant, and entertaining, your commercial links are, to us, spam.

More briefly: you are welcome here. Advertising is not.

I'm also gonna say something else publicly; Steven is a particularly close real-life friend, one who has had my back against actual threats like eating seriously bad food, drinking to excess, walking down dark, dirty, dangerous streets, mindlessly supporting University of Maryland athletic teams, staring fixatedly at his astonishingly gorgeous wife, and being married to my ex-wife. It is not possible for you to get into a pissing contest with him in this venue and win (and frankly, there aren't many people here would could). I strongly suggest that if you wish to continue to share your thoughts here (which--I say again--you are welcome to do and many of us will enjoy it), you might best wag your tail and show him your belly. Metaphorically.

And yeah, he works at NASA.

So, like, thanks.

bdr said...

I didn't know Steve knew Robin.

Bob King said...

"you might best wag your tail and show him your belly. Metaphorically. "

No fucking way. Not now, not for you, not for him. And certainly not when it means admitting that I'm guilty of "advertising."

I've already over-explained, publicly and in private, and I have no patience with those who clearly value buttsniffing and forced consensus over communication.

Yes, it is a "pull back a bloody stump kind of day." I am profoundly offended at the assumption that I
would waste my time writing many paragraphs here for advertising, as if this were an issue I would fucking well EXPLOIT.

And, for the double-whammy - that I would be so fucking incompetent as to spam YOUR blog instead of one with actual consistent traffic that would make it worthwhile!

Now, the only way Steven could win a pissing contest with me on THIS point is if you were willing to permit it. Since you are not, he cannot, and we will never know, but frankly, my flamex3000 with the chainsaw bayonet fitting and the notches on the butt, carved when I was young and foolish say "I doubt it."

But whatfucking ever, it would require repeating every single word I just said, but in smaller words for those of smaller IQ's and duller perceptions. You need to be a fucking damn dull tool to willfully mistake my intentions here.

Well, if he works at NASA, I guess that explains a few things about how things fuck up there, and where he gets his communication style.

You would think someone who works at what Temple Grandin describes as, "The worlds most expensive sheltered workshop," filled with socially inept geeks like me would get aspie-speak and have learned to listen after losing two shuttles dispite warnings from...

So, Steven is a NASA middle manager in charge of safety operations, I take it?

As for your invitation to keep contributing - as long as I don't point to anything I'm a proud enough to put up for sale, kindly go fuck yourself with the closest, sharpest Alexander Calder.

What I do and what I am go together.

That whole, "Welcome IF you behave as if you are not you" syndrome is kinda the whole point of the anti-puzzle-ribbon thing. So, no, I won't submit, won't kiss your ass and I won't make nice and pretend I've done anything inappropriate.

I'll admit that I could have done more to make sure I was not misunderstood. But then, I thought I was on aspie friendly turf, and had I realized otherwise - well, I probably would not have bothered.

I was mistaken, and I'm sorry that you still don't get that when an aspie like me speaks, you have to read the words to find out what they meant to say. Because that's all there is. No hidden agendas. No concealed motivations, misdirections or lies.

When we lie, apparently unlike neurotypicals, we do it consciously. Of course, that means we are rarely very good at it, and generally pick truth as the easier path - if the truth is tenable at all. Alas, I had to become damn good at it, because some people simply cannot handle the truth - and if they are the ones feeding you, that can be an issue.

So, pardon me all to fucking hell, here, but if I WERE to be willing to stoop to blowing smoke and sunshine up the collective assets of this blog, I'm perfectionist enough to do it a whole lot better than your seriously jaundiced and insulting misrepresentations of my intent would imply.

Frankly, I doubt you'd notice you were being manipulated, since it mostly implies figuring out the biases of the target and then pandering to them.

And, as you see, I'm completely unwilling to manipulate you or Steven emotionally in order to get you to like me so I can be one of the club. I have my two friends, and that's all I can cope with.

I'm not going to feel deprived or stricken by being left out of your hierarchy, and as you might discern, I'm not flattered by the offer, or particularly impressed by your ability to understand what motivates me.

By the way, a really fucking poor choice of metaphors. Just in case you had not figured that out, that was pretty much guaranteed to make me flip out. I suppose I should consider that, as a neurotypical, that was your intent, to anger me and make me discredit myself so you don't have to come down on your asshole friend for being an asshole.

Well, whatever. He was, and quite deliberately so. He's your friend, and you don't want to call him on it. Well, again, whatever. Times like this make me glad I don't need a fucking cheering section to get up in the morning.

Oh, damn, yeah, the chainsaw still works. sorry. Finger slipped. I guess I have been discredited.

...and yet, somehow, it just doesn't feel that way to me. I suppose it's a matter of perspective.

Landru said...

Or perhaps you could just, y'know, not link to your store. Like I asked. Plainly. Politely. Repeatedly. Clearly.

But whatever works for you, Bob.

Dweeze said...

You know, I miss a few days, and come back to find you eviscerating commenters. You couldn't give a head's up?

Puffy said...

I work with little ones with autism. I've enjoyed reading this discussion. And I had to look up the definition of "eviscerating."

Anonymous said...

Why do you feel a need to pathologize "the quirky kid in school that talk[s] about Star Trek or hammers all the time"? Intelligent people with quirks shouldn't be made to feel as though they had some sort of brain disorder. It's a shame that these days nerdy kids even have the adults they trust picking on them.

Landru said...

Jesus, what the fuck is it with people who are so covered in their tinfoil hats that they have to refuse to leave us a name to insult them by?

Look, anonymouse N from random Wisconsin who reached this site and this post by a particularly idiotic search string (see? may as well give us a handle, then I don't even think about how the fuck you got to this Web backwater) and spent all of a minute and a half reading before you blasted off at someone I know to be knowledgeable, Kimmah is the parent of an aspie kid. I am not only the stepparent of an ASD kid, I was that quirky kid who talked about Star Trek and hammers all the time, and I've spent my adult life talking about other shit no one else cares about. For you to get so fucking far out of your ability to comprehend words on a page on the first fucking comment on a 6-month-old blog post is startling testament to your capacity for assitude.

Oh, and welcome. Dickweed.