Vorya Yarow’s letter to the so-called Autism Advisory Task Force

Vorya Yarow has written a letter to what is called the Autism Advisory Task Force. I do not know if this task force was the same bunch of delusional morons who brought us such great beats as the Combatting Autism Act or Helping Children With Autism (in Australia), but I will give them the benefit of the doubt this time and say they are not.

Although Vorya‘s open letter and site in general makes me grind my teeth by being very much all about the children, the message in the letter is one that I heartily endorse. However, before I begin with my comments about the letter and its content, I would also ask Vorya to please consider that when you are talking about building a better world and then making it all about the children, you are defeating your own efforts. Whether you like it or not, children learn from the adults nearest them. And if you continue to fail to provide autistic adults like myself a way of feeling safe inside their own skin, of learning to live with themselves, the manner in which the children of today behave as the adults of tomorrow will reflect this. Whilst I felt devalued, discarded, and unwanted as a child and as an adolescent, I feel even more so now that I have spent the majority of my lifetime so far where all Human beings spend the majority of their lifetimes: adulthood. The constant “children, children, children” that I have seen since I was told that the difficulty I am seeing in life is because I was born with a different braintype than the expected norm is responsible for that. Simply put, you, the “children, children, children” crowd, have more or less completely alienated me. I am sure that if there comes a time when your children need you to have actually had a dialogue with me, and learned from me, they will be telling you the same thing that I am now: well done.

Right. So where was I? Oh yes. Vorya‘s open letter to the “Autism Advisory Task Force”. From the get-go, the clauses of this open letter make it pretty evident to me that either nobody on this so-called Advisory Task Force is autistic, or if it does include autistic adults, then only as an example of pure tokenism.

This is hardly for lack of opportunities. The number of autistic adults who are visible in the media at large is still small, but far higher than one would expect, given our relatively tiny percentage of the populace. Even using the highly flawed and seemingly designed only for fearmongering new estimate of one in eighty-eight, that amounts to 1.136 and change percent of the population (get out a calculator and divide one hundred by eighty-eight if you want to know the exact percentage). By comparison, mental illnesses of all stripes affect as many as one in four people. And unlike the new autism scaremonger rate, mental illness rates are backed up by research and tons of it. I but digress. The point here is that given how small the pool of persons working in the spotlight in modern media is, that we have people like Temple Grandin making headlines at all is testament to the fact that if a taskforce of individuals that truly represent the autistic was actually desired, it would not take a lot of effort to find members. This is why I feel that the Autism Advisory Task Force is a farce. But hopefully this will become clearer as I finally get around to dissecting and adding my own reflections to Vorya Yarow‘s open letter to the Autism Advisory Task Farce. (Please be warned: I will attempt to quote only what is necessary to make my points, but the statements here are lengthy, with even just quoting a sentence entailing a bit of space usage.)

“It is important that the United States Government is presented an opinion that the basic premise of the Senate Bill 946 and the Autism Advisory Task Force regarding the medical necessity for the treatment of Autistic people (referred to in the Bill’s language as “individuals with autism”) evokes a comparison to a medical necessity of treatment of Gay people (“individuals with homosexual symptoms”) in the not so distant past.”

Ouch. Right off the bat, the Autism Advisory Task Farce is pretty much told what they can go and do with themselves. If you are of the same age as the people I met when I tried to kid myself that I could go to a university and do anything but drown in my own poor support system, this might be a little difficult for you to understand. But there was a time, somewhat prior to when I was born and rapidly diminishing during my early years, when “I am gay and proud” was something you just never uttered in public. Not because the ignorant would lynch you, but because a doctor might sign an order, and the next thing you might know, the police would be coming to your door and dragging you off to the local mental hospital. Which were much more unpleasant places to be in during those times, I might add.

Help me out here, those of you who were born after 1990. How does hearing that make you feel? Outraged? Angry? Appalled? Disbelieving that your parents and mine could live in, support, and condone such disgusting behaviour towards people who already live with their difficulty settings raised, based solely on a characteristic they can help no more than the colours of their eyes or hair? If so, good! That means you understand (but not grok, not just yet) how the autistic feel not only about the world we live in now, but also about things like being called an “X with autism”, or being told we need to be “treated” for a characteristic that in cases like mine is the only thing making us significantly different from our most egregious abusers. Oh, and guess what, “person first” assholes? See the comparison between the phrases in my quote? How does it feel to know that you only have to add one word to the phrase you are trying to push on us in order to change how we think about ourselves to perfectly match the language of anti-homosexual legislation? Thank you, Vorya, by the way, for helping me to prove once again that when one pushes “person first” upon the autistic, what they are really doing is putting the autistic individual last.

“It’s also important that the Government is made aware of established scientific facts regarding the neurological differences in Autistic people, which simply stated means that the brain structure of Autistic people is different, and that this unequivocally defines who they are, and that it cannot be altered by medication, or by invasive intervention, including the ABA (Applied Behavior Analysis) and other similar treatments. It is a consequence of these scientific facts that we refer to Autistic people as such and not as individuals with autism.”

If you are a “person first” pusher, boy do I feel sorry for you right now. Haha, yeah right, and maybe monkeys will fly out of my arsehole. You felt that, “person first” pusher? That is every claim you have to credibility being smashed in the balls with a sledgehammer, much like Clint Eastwood‘s character does to Richard Kiel‘s in order to cut a fight short during one of the establishing acts in Pale Rider.

During conversations I had with Professor Anthony Attwood, whom many believe is the best candidate to succeed Hans Asperger for the title of having done the most to advance the cause of the autistic, I ventured forth a belief that autism is a series of mutations in the physical structure of the brain with varying effects. He has told me that there are indeed differences, and many of them, in the structure of the autistic brain compared with what I will call the normie brain in this instance. If you were to tell me that my amygdalae were significantly smaller than the expected norm, my visual cortex was at least fifty percent larger than it “should be”, and my olfactory cortex was basically a couple of dozen cells who were all sitting around and smoking serotonin together, it would draw one response from me. Really? Tell me something that I did not already figure out a while ago. (Sarcasm is very hard to convey properly over the Internet, but the way I would say that bears a strong resemblance to the way Ed O’Neill played Al Bundy for more than a decade.) But the point here is that, once again, being autistic means your brain is different to the expected norm, and you get no say in the matter whatsoever. Think about it for a second. If a person were given a choice, say in utero, told “we want to make you significantly more intelligent than your peers, capable of seeing things in far greater detail, but unable to make yourself properly understood by most people and unable to filter out the worst input you receive from others”, who the fukk in their right mind would choose that? And if you think we get it from some external source, if you buy that bit of curebie bullshit, ask yourself this. If it were possible to “get” autism from another source, even the scaremonger’s 1.13 and change percent is an extraordinarily low ratio. The realistic and credible 0.66 and change percent, even more so.

By now, you might have heard that the sudden increase to 1.13 percent in estimates is backed by the Centre For Disease Control (just what the fukk are they doing involving themselves anyway? do they not have better things to do? like finding a cure for AIDS?). You might think that makes it credible. You would be mistaken.

Quoth Varya‘s letter: “It is important that the Government understands that the Judge Rotenberg Educational Center shock therapy treatment is just one of many treatments that “have been scientifically validated and have demonstrated clinical efficacy”.”

The scientific community just took forty baseball bats in the groin. But it is important to understand something about how science actually works. You see, in science, rather than just say “god did it” and expect everyone to take it on your word, you have to observe a phenonema, develop a theory that explains it, can be tested, and fits with other related theories, and then test the everloving shit out of it. This is exactly what Charles Darwin did when he observed that certain organisms thrived in certain environments better than others. He devised a theory, and more than a century of tests have confirmed the validity of that theory. But here is the thing: the process can be abused. There are a number of different ways the process can be abused, such as biasing the experimental group or control group, using a small enough sample size to drastically increase the odds of getting the result you want, or substituting anecdotes for reproducable, explainable results. Probably the worst sin a person claiming to be a scientist can make, though, is just making shit up. Have you figured out yet why I used those specific examples of abuse of the scientific process? Well, for those of you who do not know it yet, curebies abuse the scientific process in exactly these ways day in and day out. In fact, their whole movement pretty much rests upon those techniques.

On a similar token, thanks largely to the work of great men like Hans Asperger, we know for a fact (in the real sense, not curebie sense) that the degree to which an autistic individual copes and thrives in adult life is reflective of how they were treated as children. Hell, it can even be said that the personality they adopt as adults reflects the manner in which they were treated as children. My mother can quote you chapter and verse about the latter. My male parent, bless his cotton socks, would rather you just accepted that I put it all on myself. Guess which of these two I would submit to donate my bone marrow to if I were told they had leukaemia and I was the only known match?

Those of you out there who do not already know this, when you are told “this has been scientifically proven”, you need to ask questions about it. The first question you should ask of the person saying it is where you can find a source or even the actual study that allegedly proves the supposition. If the person telling you their pet idea has been scientifically proven acts evasive in response or even flat out refuses to provide these things, just repeating “it has been proven!” (basically, stamping their foot like a spoiled child), treat their “proven” idea as fraudulent bullshit right off the bat. Ninety-nine percent of what curebies have to say for themselves will be struck off by this test right away. In the exceptionally rare event that they do show you a source or even scientific study that appears to back up their claims, you then have to look at it carefully. Does it actually back up what they are saying? Often, curebies like to cherry-pick documents. A single paragraph will be offered to prove that they are not talking out of their butt. But when the scientifically-inclined autistic adult goes to check the whole document, which may consist of dozens or even hundreds of paragraphs, they discover that the original author was offering the quoted paragraph as an explanation of the position they were trying to refute, or even being outright sarcastic. I only wish I were making that up. And when cornered in this approach, the curebie indulges in the sport of every curebie who has been flatly contradicted by the facts: denial. They will deny they have just had their arse handed to them by the facts, they will deny they actually said what they said (unforgivable in my eyes), or they will even flat-out deny that the source you have just quoted invalidates them. Denial is not a river in Egypt to a curebie, it is a way of life. Admitting one has made a mistake and needs to rethink every thing that they believe is not an option for a curebie.

Also worthy of mention here is that one must ask for the actual source. Chasing down an author and asking if they really wrote the offending passage can sometimes produce some interesting reactions. Sometimes, they will even tell you that the document in question has either been cut and pasted in order to make it sound like they were saying something they were not, or even outright fabricated. And then there is the quality of the source to consider. Nobody should need to be told that Tony Attwood or Isabelle Hénault are by far more credible sources than Jenny McCarthy, but apparently a curebie does. That should tell you everything you need to know about their fitness to be making decisions on the behalf of seventy-nine and a half (and change) million people, to be brutally honest.

Scientifically validated? Coming from someone who thinks the best way to judge a person’s claim of being autistic is whether that person spits their mind back at them, those two words mean nothing. Less than nothing, to be honest.

(And while I am on the subject, in the 1990s I experienced my own iteration of what is today called ABA. I will just ask quietly, where does “scientifically validated” fit into games of what I angrily call “diagnosis dartboard” and “let’s see what this pill will do to him”?)

Oh yeah, and before I forget, efficacy means different things in different contexts. Holding a shotgun in front of a person’s face has awesome efficacy when you want them to refrain from trying to rob your home or hurt your loved ones. But ask any Powell type and they will tell you: such a methodology, when you use it in support of “behave the way I want you to or else”, putting down the shotgun entails the subject taking it off you and killing you with it. That is not efficacy. It is suppression. Or oppression, if you want to call a spade a spade.

“It is important that the Government and the public be aware of the Autism Advocacy Task Force members who may have a conflict of interest in the matters that are the business of this task force.”

This is one of the most critical problems not only with the Autism Advocacy Task Farce, but with curebies in general. This might come as a surprise to people who are unable to fathom that organisations claiming to be charities might only be there as a dodge, hustle, or manner of making money for its organisers, but Autism Speaks are all three. And their goals, contradictory as it sounds, are both to eradicate the entire autistic population and make as much money off them as possible in the process. Tim Tucker, one of the few parent-oriented writers I can stand to read (I hope his decency in this respect continues when his child reaches adolescence, but we will see) wrote this piece about the degree to which the disgusting puzzle piece symbol has been commercialised.

I will confirm something that Tim Tucker wrote in the linked entry. One, the puzzle piece is all about the parents, family, medical professionals, researchers… in short, everyone except the autistic individual. Two, people, even people who should be with me in this matter, mistake it for being a good representation of me. That pisses me off. I have written about it on prior occasions, so I will just come to the point as it relates to Vorya Yarow‘s open letter. The only, and I do mean only, reason the puzzle piece is pushed on us consists of two parts. One minor, the other very, very major. The minor part is that we have offered nothing credible to replace it with. That is somewhat understandable. Presently, we are a bunch of disparate individuals who cannot even organise into a unit to organise the noise we make, although that seems to be slowly changing. But the major part of the problem is that organisations like Autism Speaks make money by pushing the puzzle piece at us. They are no more likely to relinquish this merchandising gimmick than they are to listen to a word we have to say (that is, not at all). To call this a major conflict of interest would be like calling Autism Speaks a bunch of frauds who have somehow managed to combine being a terrorist group with being a commercial entity.

Which brings us to a critical, inescapable point about the Autism Advocacy Task Farce. First of all, who in the fukk named it? A group that says aversives are okay in any manner, and seems so focused on promoting the curebie agenda, has the hide to call itself any title with “advocacy” in it? Excuse me, but I have known many people who work as advocates for the disabled, mentally ill, and even autistic. I am sure that every single one of them will agree that a person who calls themselves an advocate and promotes an agenda that is contrary to their client’s interests to the degree that ABA and other aversion “therapies” are is a liar. This group has no business using the word advocacy in it. If they were advocates, they would be recommending that the Combatting Autism Act be repealed. They would be recommending that Affirmative Action laws be expanded to include the autistic. They would not be referring to us as “individuals with autism”, and they most emphatically would not be stating that we have a medical necessity for treatment. Especially not in a time when treatment double-plus equals abuse, violence, torture, and every other variation on the word mistreatment that you can possibly think of. Want to live in a world where your child can be taken away from you then subjected to torture and invasive brain surgery with no clear purpose (or “opening up the skull and monkeying around to see what we can do without killing them”, as it should be called)? Then just keep right on letting the Autism Advocacy Task Farce talk for you.

And yes, I know I am sort of going away from my usual self by addressing parents here. It is for a reason. “I am not autistic,” you can tell me all day, “so why should I fear for my child if these people get their way?”. Well, guess what, assholes? Of the two families comprising some three or four dozen members that I am included in, I am the only, repeat only, person who has been told they are autistic. Neither of my parents are autistic, and neither is my sister. My sisters’ siblings, and their various children, can at best be described as too ignorant and/or stupid to be autistic. My male parent’s siblings and their children… well, I can think of two amongst that lot who are not too stupid and/or ignorant to be autistic, but that is two out of somewhere between one and two dozen. Given that my male parent’s younger sister has three children who each have an average of three or four children, the candidacy of her son for this status is not that certain. My male parent’s elder sister has a son who is approximately ten years my senior whom I would not be surprised to hear is autistic. But that is two out of dozens. So to get back to my point, do not kid yourself that laws requiring what I will jokingly call mutant registration here will not affect you. You have no way of knowing that for certain.

Even though autism is not a health problem, it is a health matter, and people who display such a severe conflict of interest relating to it should have no say in the matter. Calling these people advocates makes a joke of any government’s commitment to helping the autistic integrate better with society. The Autism Advocacy Task Farce is therefore a misnomer.

“The social services numbers presumably indicate that some 90% of Autistic people processed by the “Treatment Intervention” system come out disabled. The possibility that the aggressive treatment may be a contributing factor or provides no positive value should be considered and studied.”

This statement, which closes point four is a very uncomfortable one for me. During my childhood and adolescence, I came under the purview of a number of different child and adolescent psychologists and psychiatrists. Their solutions to the “Dean McIntosh problem” ranged from shutting me away from society and social interaction to be ignored to seeing what random pills will bring the results most to their liking. To say that these approaches have brought about serious and lasting adverse effects is an understatement. My ability to sleep, to carry a conversation with another person without entertaining the thought of what they might look like with a depression in their face that corresponds to my fist, to have a normal relationship with another Human being, to even carry a conversation with either of my parental units… all of these things have been adversely affected by what was thought to be appropriate treatment for autistic children of the 1980s and 1990s. To say that “treatment intervention” provided me with no positive value is an understatement. In a just world, the people responsible, people like Denise Guy, would be forced to live the rest of their lives without limbs, eyes, eardrums, or tongues. I mean without all of them.

And do not give me any jib about how they were not trying to “treat” me for being autistic. When you aim a cannon at a car and hit a child instead, the result is exactly the same. One of my favourite philosophical statements is that reality and results do not give a fukk about intent.

The truth is that people like me have been living with the effects of “abuse them mercilessly until they are adults and then just ignore them” as a social policy for the autistic for some time now. People like the Autism Advocacy Task Farce and Autism Speaks want governments and society at large to just continue with business as usual. You can call me biased until the cows come home, but I just do not see that as a viable option anymore. You have already turned my generation into a real-world adaptation of X-Men where the mutants cannot quite so easily come back and bite a chunk out of your arse then spit it into your face. Do you really want another generation thinking to themselves how nice it would be if the gene group that apparently pops up both in the homosexual and the autistic suddenly changed to include what we call superpowers? (And before you dismiss the connection, that pre-natal autism test that has rightly had the autistic up in arms and spouting angry shit? Well, words on the grapevine have it that it started its disgusting, pernicious life as a test for the “gay gene”.) Because if there is one thing that nature has taught us over the last few thousand years, it is that nature really gets a kick out of monkeying with our genetics to see what will happen if one group gets this or that advantage. We have tried so many times to get you to meet us halfway, norms. If you keep refusing for another generation or two, and some of us start figuring out how to make things like perpetual motion machines or cold fusion reactors, you, the norms, will be fukked.

Whew, I am out of breath. The “next” (as of Vorya‘s letter) meeting of the Farce was yesterday as I finish writing this, but hopefully it will get through to some people. But I want to repeat this part for emphasis: we need to start a serious process of truth and reconciliation now. Because when (and it is when, not if) seriously wrong autistic young adults start forming resistance groups and murdering people who solicit donations for Autism Speaks, it will be too late.

Robert Prosky often said the words “let’s do it to them before they do it to us” during his stint on Hill Street Blues. I know I cannot be the only person on the autistic spectrum whose feelings concerning people like the Autistic Advocacy Task Farce can be summed up that way. If you are thinking similar thoughts, then please make sure this word gets to them.