There is a great deal in common between those who are fanatical about wiping out autism in general and in their particular children and political authiritarians who want to "wipe out" world-views that disagree with their own.
I've come to the tentative conclusion that the viewpoints and tactics are broadly similar due to a considerable overlap in populations.
At this point I should admit a certain degree of learned prejudice and reflexive distaste for both expressions of rigid authoritarianism, both from being on the short end of this mindset myself and from seeing the rubble and wreckage created by such people, however well-intentioned.
Indeed, the more idealistic and well-intentioned people of this mindset are, the more damage they do. Truly vile and self-centered people impose on others only to the extent that it satisfies their personal needs, such as lusts for power and dominion. They are quite willing to settle for an acceptable degree of compliance tempered with a lack of demands upon them for anything resembling responsiblity.
Idealism coupled with ignorance and infused with messaianic zeal is a damn dangerous combination, and one unlikely to result in any objective good that the idealist would expect.
Nonetheless, idealism - or more preciesly, the cynical exploitation of idealists for profit - tends to drive all causes, at least here within the United States. A quotation on Autism Web from Keven Lietch the parent of an autistic child may give you some insight into why.
I'll also say upfront that I don't like discussing Megan online anymore. I've
recieved very abusive email, addressed to Megan herself from various friends of
Erik's. Recently, someone told me to hang myself with the corpse of my dead
children. That was, believe it or not, one of the milder ones. Suffice it to
say, there's a line I won't cross. I'll talk in generalities to make a point but
I won't discuss any specifics about her at all.
I have Kevin's main site in my blogroll because he's no extremist of any sort. He merely reports what works, what does not work, and what wisdom he's gleaned from talking to actual autistics.
Well, in the idealistic community of "Parents suffering with Autistic Children," that degree of common sense is seen somewhere between french-kissing an Aids victim and listening to a Satanist critique the Bible.
http://188.8.131.52/autismfacts/index.html is the main page of a site that seems clearly to be related to Lennie Schafer's Autism Report, well known for being unapologeticly pro-cure and anti-autistic. I myself have personally benefited from an authoritative diagnosis from Mr. Schaefer; I am "not autisic" because, well I can communicate my disagreements with him to others. Or in other words, if I am able to communicate an objection, I'm not autistic and therefore I have no right to criticise, while if I am "really" autistic, any objections I may communicate through screams, grunts, twitches or typing have are to be dismissed "for my own good."
This is, by the way, a "double bind" argument intended to defend the user against any criticism at all from anyone.
Lennie dismisses several "myths" bout autism that I frankly have never heard anywhere but from Mr. Schaefer and those who consider him "authoritative." I quote Keven Lietch's site because Lennie either doesn't want his important and valuable work reproduced or taken out context, I am unsure which, but I attempted to quote the main page Mr. Schafer's site directly, but found I was unable to do so. A quick "view source" revealed the following script (In red.)
<META name="description" content="Autism: A Debilitating Disease, Not a Culture">
<META name="keywords" content="autism, autism is not a culture, michelle dawson, Recognized Definition of Autism, the Myth of Autism as a Culture, Professional Opinions supporting autism as a disease, Parents' Views, Myths and Facts, Michelle Dawson">
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<div align="left"><font face="Arial, Helvetica, sans-serif" size="2"><br>
<i><b>"We are not a plague. We are people who have a culture:
a large published literature, art, music, architecture, design,
technology, science, and engineering." </b></i></font></div>
<div align="left"><font face="Arial, Helvetica, sans-serif" size="2"><br>
~ <b><font color="#CC0000">Michelle Dawson</font></b>, "IS
AUTISM A PLAGUE? Dr Victor Goldbloom and the Decision of the Quebec
College of Physicians", 6 Oct 2003</font></div>
<p align="center"> </p>
<p><b><font face="Arial, Helvetica, sans-serif" size="3"><img src="arrow_r.gif" width="19" height="14" alt="arrow">The
United Nations World Health Organization classifies Autism as a <font color="#CC0000">Disease</font>
<img src="arrow_r.gif" width="19" height="14" alt="arrow"></font></b><b><font face="Arial, Helvetica, sans-serif" size="3">The
United States Director of National Institute of Mental Health Dr. Thomas
Insel, says Autism is a Brain <font color="#CC0000">Disease</font> <a href="#2">**</a><br>
<p><b><font face="Arial, Helvetica, sans-serif" size="3"><img src="arrow_r.gif" width="19" height="14" alt="arrow"></font></b><b><font face="Arial, Helvetica, sans-serif" size="3">The
Judicial Community Defines Autism as a <font color="#CC0000">Disease</font>
<font face="Arial, Helvetica, sans-serif" size="2">In stark contrast to
the widely recognized medical opinion that autism is a debilitating neurological
disease, a small, (yet noisy!) group of individuals in Canada and elsewhere
has become very vocal and active in the autism public policy debates and
struggles. They have become forceful advocates for the bizarre fringe
notion that autism is a misunderstood "culture" rather than
what science knows it to be - a very serious disease of the brain.</font><br>
<p><font face="Arial, Helvetica, sans-serif" size="2">The "<b><i>autism
is a culture</i></b>" fringe has repeatedly sent messages to those
who support autism treatment suggesting that autism treatment is symptomatic
of intolerance and cruelty. Nothing could be further from the truth, yet
their messages have become increasingly accusatory and offensive. Many
have complained of being harassed by frequent intimidating messages from
this group. They have even made public personal attacks against individual
parents accusing them of being "liars." While some consider
this fringe group as truly being from another planet, others have requested
that a website be created to help people unfamiliar with autism issues
put them in their proper context and perspective.</font></p>
<p><font face="Arial, Helvetica, sans-serif" size="2">Hence this site. </font></p>
<p><font face="Arial, Helvetica, sans-serif" size="2">Although we live in
a free society where everyone, including frauds, have the right to express
themselves, every opinion expressed in public, especially if presented
as a fact, should be subjected to critical analysis. The misguided and
misleading arguments of the "autism is a culture" fringe are
most deserving of such analysis.<br>
<p><font face="Arial, Helvetica, sans-serif" size="2"><a name="1"></a><b>*
</b>W.H.O. International Statistical Classification of Diseases and Related
Health Problems, 10th Revision, Version for 2003, <a href="http://www3.who.int/icd/vol1htm2003/fr-icd.htm" target="_TOP">http://www3.who.int/icd/vol1htm2003/fr-icd.htm</a><br>
<b><a name="2"></a>**</b> Research psychiatrist and neuroscientist Thomas
Insel, director of the National Institute of Mental Health and head of
an interagency federal panel on autism. Insel says autism might in fact
be "many different illnesses with one name," which would account
for the array of symptoms, varied times of diagnoses and different strands
of autistic behavior. "These are urgent questions because we're talking
about a lot of children and a tremendously disabling brain disease, which
really robs a child and a family of the personhood of this child,"
Insel says. (emphasis added). From the article, "More questions than
answers in autism" <br>
Sharon Jayson, USA TODAY March 29, 2005 <br>
<p><font face="Arial, Helvetica, sans-serif" size="2"><a name="3"></a><b>***</b>
[Allan, J. BCSC: para 135] "Autism is the disorder or illness that
requires treatment".Auton et al. v. AGBC Date: 20000726 2000 BCSC
1142 Docket: C984120 Registry: Vancouver, B.C., CANADA<br>
[Saunders et al. BCCA: para 2] "A small but significant percentage
of children develop autism or autism spectrum disorder (ASD), a neurobehavioural
syndrome that destines almost all whom it strikes to a life of isolation
and eventual institutionalization." Auton v. British Columbia (Attorney
General) Date: 20021009, 2002 BCCA 538 Docket: CA027600 Registry: Vancouver,
[McLaughlin B et al. SCC: para 4]The infant petitioners suffer from autism,
a neuro-behavioural syndrome that impairs social interaction, hinders
communication and results in repetitive behaviour. Auton (Guardian ad
litem of) v. British Columbia (Attorney General) Neutral Citation: 2004
SCC 78: File No.: 29508. Date: November 19, 2004 Registered: Ottawa, Ontario,
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<p><font face="Arial, Helvetica, sans-serif" size="2">Note: The contents
of this site may come from a variety of sources,<br>
including newsletters, blogs, internet lists and newsgroups, etc.</font><br>
<p><font face="Arial, Helvetica, sans-serif" size="2"><b>Contact Us</b>:
// protects email from bots
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document.write('<a class="body" href=\"mailto:' + user + '@' + site + '\">');
document.write(user + '@' + site + '<\a>');
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Inasmuch as this site is presented as part of an important ongoing debate about the nature of and remedies for autism, the portion of the text highlighted in yellow, and the knowledge that no respectable authority worth citing on any mental health issue would consider properly credited citations to be inapproprite, even critically, I am left with the inescapable assumption that Mr. Schaefer wishes to be taken entirely in context.
Some people may argue (though not likely the "some people" who cited the dire need for the above-referenced site} that the only reasonable assumption of the utility of such a script woud be to limit "fair comment" by making it difficult for critics to highlight and blog a paragraph. I dismiss this as a clearly invidious presumption, for it presumes that Mr. Schaefer, a well-respected and widely-read authority would be ignorant of, amoung other things, elementary copyright law, the operation of html browsers and the existence of .PDF creation utilities that would preserve his words in unselectable stone. That would reveal a sort of intellectual dishonesty and discomfort with the testable reality of his own ideas that would strongly undermine any false pretentions of qualified authority. Indeed, one might well take it as a strong indicator of intentional fraud, rather than what otherwise must be presumed to be sincere, if incorrect and counterproductive attempts to inform.
Since it would be wrong, and indeed, quite possibly actionalble for me to assume the above, much less imply that Mr. Schafer assumes his critics to be entirely ignorant of HTML and the web in general, I must charitably assume that Mr. Schafer is simply unaware of the proper procedure for ensuring a fully contextual quotation. It is slightly arcane after all and unsupported by the simple visual HTML editors it appears he relies upon.
Mr. Schaefer, if in future you ever wish for an entire page of html to be quoted so that the contextual accuracy may be without doubt, you need only do this:
<textarea height="25" width="60"> PASTE HTML HERE </textarea>
That results in an entire page of html being conveniently presented for selection as shown below.
Never force an aspie to consider the concept of "theory of mind." You probably will not like the results.
As seen above, I have several theories about the concepts of Lennie Schaefer's mind, which I am forced to rely upon as what Lennie directly says does not stand up to logical inquiry. Should I then presume that Mr. Shaefer is a fool? I think it would be both unwise and unfair to presume that, but he clearly does have an agenda, and that agenda does for some reason include getting a large number of people to uncritically accept some or all of the things he asserts to be true. In the above case, while there are many agendas I could assume, there is one very direct agenda which is clear - to get you to NOT read anything by Michelle Dawson or the people at autistics.org or gettingthetruthout.org
And we know that because? Well, because he directly quotes her, and as we see above, places her name within the keywords. So the people he is particularly concerned about are those concerend with the impact of Michelle Dawson's words. Michelle is as monomaniacal and obsessive as any aspie I know, writes and organizes as others do - supubly so, in her case but without any regard to accessiblity or the emotional comfort of her reader.
But what she speaks to directly are the professinoal ethics of, qualifcations of and underlying assumptions toward autistics of the advocates of Applied Behavioral Analysis. While I'm not as highly qualifed as her to criticise - I am qualified to observe that Lennie's resposne is a fairly typical one - that is to say, accuse michell of saying something absurd.
In this case, the entire site and it's name is (as Ken cogently illustrates,) a strawman arguement.
Recently a new site has sprung up that seeks once and for all to debunk the idea of self advocacy for autistics – indeed, they claim that the advocacy movement are frauds. Here’s their opening statement:
In stark contrast to the widely recognized medical opinion that autism is a debilitating neurological disease, a small, (yet noisy!) group of individuals in Canada and elsewhere has become very vocal and active in the autism public policy debates and struggles. They have become forceful advocates for the bizarre fringe notion that autism is a misunderstood “culture” rather than what science knows it to be – a very serious disease of the brain.
They back this up with a quote from their arch-nemesis, Michelle Dawson talking about autistics:
We are not a plague. We are people who have a culture: a large published literature, art, music, architecture, design, technology, science, and engineering.
Anyone seen it yet?
Michelle Dawson quite categorically says that ‘We are people who have a culture’ whereas what this site claims is that the autism advocacy movement says is that autism is a culture as oppose to a medical condition.
This very basic error lies at the heart of the misinformation peddled at this site. All through it, they make claims which are pretty much all based on their premise that the advocacy movement claim autism IS a culture. Lets be clear – they do not. None of the big websites reflecting the advocacy movement claim anything of the sort.
The US in particular is particularly succeptable to "Moral Panics," possibly due to a deep thread of anti-intellectualism. That convenient flaw, which is hardly exclusive to the United States, makes it far easier to manipulate people en masse than with common sense and documentation. Facts are arguable - even when they are incontravertable, and facts give no comfort to the fearful. Moral certainty, though; ah, that is the warm wet diaper of Middle America.
I would have much more to say about the futility of imposing American moral certainties upon the world in general if I did not think reviewing news headlines for the tenure of the Bush Administration would not be evidence enough of the phenomonon to those who are not entirely victims of it themselves. All I will say is this: George Bush governs as many parents "parent," he relies on certain simplistic rules and clearly believes that moral certainty is more valuable than factual accuracy or situational awareness.
That is to say, he does what he thinks to be right without reference to the people and circumstances involved or to the acutal consequences. His veto of stem-cell research shows how poorly such moralism serves anyone subject to the whims of a reflexive moralist.
Of course, it could well be argued that a sufficently relevant system of morality and precepts derived from firm ethical principles dictated by someone authoritaive in morality, culture and context would be superior.
It probably would be, but nonetheless, all moralists presume that their moral certainty gives them the right, if not the duty to impose their will on those who disagree. If they actually understand that the person or circumstance is exceptional, well, it's for "the good of all," and if the person is not exceptional, they are clearly a willful criminal.
It never occurs to moralists that other people have the inherent right to make their own mistakes up to the point, of course, where the resulting mess lands in someone else's yard.
To explicitly tie this back into Autism and the AS spectrum. Until the seventies and eighties, there was no recognition of mental difference short of outright insanity. The DSMIV had not yet evolved into an industry defining every slight difference from the "Norm" as being a disorder entitling a psycologist to billable hours.
(When I think of "the norm", I see Norm, of "Cheers," and can't imagine why being "Norm-al" is so desirable.)
Oh, I am affected by my mental distinctions, just as I am by other genetic gifts of my parents which make me painfully white and blue-eyed, requiring the medical intervntion of sun-block and dark glasses if I want to "be like normal people" and frolic in the ionizing radiation.
OR I could just stay indoors until conditions are appropriate for my mole-like genetic profile. This is one, extremely simple example of a situation where being forced to do what "everybody does" leads me - and I'm sure, many others - into behavior that is factually harmful to them, and certainly painfully uncomfortable.
There are many circumstances in which I do have to face the day - this is why I have sunblock and dark glasses. But having to cope, and even being reqired to learn to cope so that I can fuction are quite concepts from being required to "enjoy myself" under circumstances I find definitively unfun. This is in fact one of the very solid nubs of the autistic / neurotypical divide - the incapacity to understand that what is good for YOU is not always good for me - or your particular child.
One theme that seems to be repeated by every parent new to the diagnosis is that they are afraid of the children being "left out" and "having no friends." Oh, parents; be not afraid!
I cannot maintain more than two friendships at a time - and the shifting, nuanced spectrum of what NT's consider friendship, with it's unspoken but critica emphasis on power dynamics and social status absolutely mystifies me. My brain is incapable of keeping track of who I'm supposed to like and not, while emotionally I cannot put limits on closeness the way NT's seem to be able to do. Friendship, for me, is a profoundly intimate thing and therefore I'm very selective about who I "let inside."
Being pointedly excluded hurts me as much as anyone, but at the same time, being forcably socialized leads to disaster every time and I don't need large amounts of "social time" to maintain my emotional balance. "Separation from the herd" doesn't terrify me in the slightest - indeed, I need a great deal more "alone time" than would be - ah, neurotypical.
My parents were constantly concerned about my "lack of friendships" and my "Inability to get along with others" to the extent that they did not notice that I'd somehow managed to get through childhood and adolecence without a single serious life-threatening incident other than the ones precipitated by them and thoughtfully prevented by me.
Risk-Taking behavior as a means to impress others is simply not part of my profile, and from what I understand, is not typical of aspies and autistics. Risk involves unpredictablity and the potential of being conspiciously wrong in public. When it appears that we are doing something risky, you can be sure that we are quite sure that there is no acual risk.
On the rare occasions we are mistaken, it would be a courtesy not to laugh - but I do not ask the impossible.
The single riskiest endevor for any autistic or AS person is communication. Avoiding falls, burns and cuts from sharp things is simple in comparison to learning how to communicate with people who only think they are using words to communicate, but who in practice will reject concepts expressed when they have the wrong emotional connotation.
Communication has all kinds of potential unexpected consequences, unforseeable outcomes and inevitable surprises, which are stressful to us even when they are good, happy and welcome surprises. When one of the most predictable outcomes is an unpredictable likelihood of strong verbal and/or physical correction for communicating something "wrongly," it's understandable that verbal communication may be abandoned entirely - at least in your presence. From the viewpoint of any child, the point to communication is to get your needs met with a minimum of inconvenience and an absence of distress - and if that means learning to make your own bottle instead of asking, that is what will happen.
This is an important thing to understand: Different human beings have different human needs, and needs are powerful things; we WILL get what we need to survive and consequences be damned.
The single best way to create an antisocial, uncaring and dangerous person is to take a child and force them to live in survial mode - with unpredictable and ever-changing conditions placed on getting what they need to survive.
Alas, much of the advice given parents on how to raise kids will have this effect on some fraction of the total population of children, because chidren are not actually blank slates with the ability to mindlessly provide desirable responses in response to chosen stimuli.
Indeed, in order to be sure that you are not creating some variety of monster, you have to abandon a preference for appearences over reality. When a child communicates a need, you need to accept the communication and act upon it. Style comes later.
But to do that requires that you conciously abandon a fear of difference and embrace a child who will never be able to become a voluntary copy of yourself, with your values and your prejudices.
There are, unfortunately, far too many people that will pay anything and sacrifice anything, including their own lives and those of their children to maintain such illusions.
And certainly enough to sustain all kinds of extermely expensive "interventions" that demonstrate one's loyalty to a convential wisdom dispite all observable outcomes. And if you will not take the word of a self-diagnosed aspie on this point, perhaps you might consider the illustration of a presumably neurotypical Iraqi trying to survive the good intentions of Donald Rumsfeld, et al.
tag: autism, aspergers, Shaefer Autism Report, fraud, aspie, autism awareness, autistic rights, michelle dawson, autistic culture, autistic advocacy, autistic rights