Saturday, March 15, 2008

Pissing on Puzzle Pieces - It's Autism Awareness Time again.

It's April, and that time of year that rubs our noses in all the patronizing, clueless "concern" tends to drive me bugfuck. Some - even most - is well-meaning, but it's driven and influenced by those who view everyone on the spectrum as a "plague victim" who is unsuited for life.

Don't Speak for Me Anti-puzzle-piece graphicAh, the "the love that dare not speak it's name" has become loquacious indeed, but the Normalcy Police have not given up on creating fear and loathing of difference.

In this, I reference Autism Hub's "Don't Speak for Me" petition campaign, which is in turn a response to Autisim Speak's odius 2006 anti-autistic propaganda film, "Autism Every Day."

This film was alleged to depict the realities of autism, described by the film's Producer Lauren Thierry as:

"At this point we need to be showing the world what the vast reality truly is. [Lauren says]…that reality includes images of kids not sleeping through the night, banging their heads against the wall or running into traffic – not images of kids setting basketball records or passionately playing the violin."

It later transpired that the film had been 'set up' and that Thierry had purposefully attempted to display the worst possible view to the world:

"Thierry told her subjects not to do their hair, vacuum or bring in the therapists. She showed up with her crew at their homes sight unseen and kept the cameras rolling as a mom literally wrestled with her son to get him to brush his teeth, as a 9-year-old had a public meltdown, as a 5-year-old had his diaper changed. And, as moms revealed dark and uncomfortable truths about living with autism. The result is a window into an exhausting world of interminable work."

The film itself contained a segment where one of the mothers interviewed said that:

"I remember that was a scary moment for me when I realized I had sat in the car for about 15 minutes and actually contemplated putting Jody in the car and driving off the George Washington Bridge. That would be preferable to having to put her in one of these schools."

The mother in question made this statement whilst her autistic daughter was in the room with her. She further added that the only reason she didn't kill her autistic child and herself was the thought of her non-disabled daughter.

Producer Thierry called this section 'gutsy and courageous' and added that:

"If most mothers of autistic children…look hard enough within themselves they will find that they have played out a similar scenario in their minds. If this is not your reality, then God bless you."
The above makes me want to chew nails and spit bullets. But instead, I decided to put my autistic savant nature to work, perseverated a while, and came up with this graphic. It is copyleft, you may grab it and use it as you wish, so long as the copyleft remains intact and the graphic itself is not altered. (You can embed it in a larger graphic, for instance.)

From Autism Awaren...
This year, I'm hoping that the combination of skill, beauty and frankness will help to change a few minds. So stay tuned, as they say - I'm uploading several versions, both to Zazzle, and to the Picassa folder this comes from. What I am encouraging people to do is to use these images to fund-raise. More on that in a separate post.

You see, I simply cannot afford to support all the wonderful sites that do battle with the forces of curebie hatred every day. I personally admire their courage, but I have enough difficulty dealing with ordinary Republicans. Oh, and yes, there is (or at least once was) a linkage between Cure Autism Now and Free Republic. It's kind of the same mindset.

Think on that, then consider the odds in trying reason with them. What you have to do is to apply reason to those they are trying to stampede to their advantage.

2 comments:

Autism Reality NB said...

Congratulations. You have done much to help autistic children with this intelligent, insightful, commentary. Hopefully you will garner all the attention you are seeking with this one and will not actually have to perform any of the indecencies you reference to get more attention for yourself. When will we see some of the savant skills you were bragging about?

Bob King said...

And people like you say I have no social skills.

As for savant-level skills, I thought Michelle Dawson had already sufficiently underlined that point for y'all, but I'm more than happy to play. Let's see your graphic designs. Better yet, let's do a "hamburger poll."

Oh, and by the by: from your profile.


"My interest in autism, and my engagement in autism advocacy, began with my son Conor's Autism Disorder diagnosis and the realization that, locally at least, no serious efforts were being made to improve the lives of persons with Autism or to address the realities of Autism Disorder. Hugs are good, but hugs are not enough. Evidence based treatment, education and residential care by properly trained service providers are required to help the 1 in 150 persons who have an autism spectrum disorder."


You know, if you were so truly interested in "evidence based treatment," you might want to evaluate the typically cited evidence. The one in 150 (actually, one in 166 from the latest panic-mongers) is a statistical artifact resulting from broader diagnostic standards, and new awareness. It covers everything from mildly geeky people to outright flaming autism - like, say that of Amanda Baggs.

Of course, that's probably an unwelcome example, as many on the curebie side insist that since she's communicative, she cannot be "really" autistic. Read the comments - if you can - and try to figure out who the "crazy" people really are.

By they way - before you go ballistic on me, I am in no way suggesting that wanting to find a cure is insane or that it's insane to suspect that mercury could be involved in some way or that ABA might help. But "Hating Autism" is about hating the existence of autism and autistics to the point of irrationality.

And, alas, your approach to me is not dissimilar. One might wish to consider the possible judgment of uninvolved third parties here.

The argument that Amanda Baggs is "not really" autistic means the 1 in 166 number is not just an artifact, it's a bizarre and untenable falsehood, spread, I presume, for economic advantage.

It's so much better from a propagandistic viewpoint than one in a thousand, or one per five thousand, or one per a hundred thousand - depending on what sort of "autism" you limit yourself to when an autistic talks back.
Because, of course, communicative folks like me are "just faking it" to "get attention," or possibly to "make good parents look bad."

But I never accused you of being good parents. Good parents do not blindly buy snake oil, and then blame the people who warned them they were buying snake oil when it doesn't work.

As you assert, science is important when reaching important decisions about how to help autistic children - and of course, discerning what "help" might actually be.

Here's some science for you.


"The author writes “and a 2003 report by the Center for Disease Control suggests that as many as one in every 166 children is now on the autism spectrum, while another one in six suffers from a neurodevelopmental delay.”

However the 1 in 6 statistic includes autism as well as other disorder. Furthermore, these disorders include thing like Attention Deficit Hyperactivity Disorder, which are not delays, but disorders or differences. Moreover, 1 in 6, corresponds to 16%. This is the percentage, equal to or below one standard deviation from the mean in a normalized curve. In terms of a given measure such as adaptive behavior or academic achievement, I should (based on the statistics) expect that 1 in 6 children to be at least 1 standard deviation below the average. The confusion here is similar to the confusion that leads to shocked outcries, when it is revealed that ½ of the population perform below average on an IQ test.

Further, it is worth mentioning that many of the advocates of alternative treatments in autism or the vaccine etiology of autism are inconsistent as to whom this 1 in 6 applies to. It can range from describing brain disorders to asthma and food allergies depending on the source."




Anyway, I don't know about you, but John Best is someone I would consider to be too irrational to be permitted hamsters - much less children. Regardless of their functional abilities. So, yes, I do question his parental skills. That's probably too mild a way of putting it.

One further question, my dear curebie, what do you think of the procedures used at the Judge Rottenburg Center? Are you hoping to get New Brunswick to include such time-tested aversives as they use into your Provinces ABA protocols, the ones you wish the Canadian Taxpayers to support - and the ones Michelle Dawson, myself and others say is of(at best) of limited, specific utility and (more typically) abusive and damaging?

Personally, I don't see how any wise, good or foresightful parent would think PTSD on top of Autism was an improvement. But maybe the hypervigilant concern for not making YOU feel conspicuous in public makes it all worthwhile.

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