sp!ked review of books | ‘Autistic children are now seen as a burden’: "‘Autistic children are now seen as a burden’Amen. I commend this book to you, in hopes that it may be a useful tool to get through to those who are - with the best intentions and the worst possible advice - are being abused.
Dr Michael Fitzpatrick, author of Defeating Autism, talks to Helene Guldberg about how raising a child with autism can be made infinitely harder – emotionally, financially and practically – by the charlatanic ‘war on autism’.
by Helene Guldberg"
I use the term "abuse" with a very narrow intent. I speak only of outcomes. I'm not speaking of intent; I presume that for the most part, parents of "different" children honestly think that their lives would be better if they could be less different. But this presupposes that the parents themselves have a valid perception of what normal is, and furthermore, that it's better for a child to learn to emulate normal behavior rather than to learn how to best express and express who and what they actually are. And that is my critical point here; which is not about panicked parents dealing with the "burden" of an autistic child, or indeed, any child. Furthermore, we must be careful to ensure that what we are "fixing" is an actual problem and not a social construct that may be irrelevant to the persons involved, if not utterly false.
So, this is not even about parenting, per se. What I'm trying to address is a problem that the autism issue has made visible, and which has been made visible in several other contexts, the inability of our society to come to terms with the idea that it's fundamental assumptions about who people are, what they do and how they should behave are incorrect; not just slightly incorrect, but dangerously so.
Not to put too fine a point on it, but in every serious matter facing the world today, we are in tension between evidence and people who are in absolute denial of the evidence because the actual, measurable testable evidence would conflict with their fundamental assumptions about reality.
You might be tempted to think that at this point I'd be asserting a tension between faith and science. I'm not. Faith applies when evidence does not exist. When evidence is in conflict with faith, when evidence promises an outcome and actions validate that reality, it's not a matter of faith to act against evidence in expectation of a different outcome. It's insane.
I don't think it particularly controversial to suggest that it's unwise to act as if the viewpoints of delusional people are as valid as people who do their best to disabuse themselves of delusion are equally valid, much less that people have an inherent right to act upon these ideas when those ideas must inevitably cause harm. The delusional segments of our society claim that this harm is not real. But then, they would, because they are insane. That is how we know they are insane. They do things that are predicted to cause harm to others, do them anyway, and then blame the harm on either the actions or inherent nature of the victims.
And since this is a general social phenomenon that seems to transcend borders and cultures, I want to emphasize that I'm pointing to autism and the behavior of the people involved for one reason, and one reason alone; it is an accessible topic that most people are not directly impacted by to the extent that it's more than usually difficult, in an emotional sense, to evaluate it objectively. That, and I know it well enough myself to find sources and talk about it intelligently.
I could just as easily have picked energy policy, prison policy, drug wars, various manifestations of religion and cultural warfare, or climate change, but most of these have far greater general emotional investment or far higher barriers toward evaluating the quality of the arguments on either side.
All these disputations, wars and disagreements arise from one common root - the formation of various systems of thought and human belief structures that permit us to absolve ourselves from the consequences of our own choices and actions.
If you have the interest and capacity, you can look at any such seemingly intractable situation, and you can see that at the root that it came about due to someone or some group decided that their problems could and should be solved at someone else's expense. Since this is obviously wrong, you have to develop an ideological, religious or institutional excuse to allow people to square it with their consciences.
And in doing so, you have created a self-perpetuating institution that exists and feeds upon gaining a benefit, while dumping the costs on someone else, and it's such a seemingly wonderful idea, it spreads widely, perverting everything it touches. Sometimes it's effect is so profound it's almost impossible to discern. But that's why I chose the title: in very important ways, our our perceptions of what someone can do affects what they will be able to do, even when we are honestly trying to act in their best interests according to the best information we have available. Nowhere is this phenomenon clearer or the consequences more evident than in the literature and the blogs of the Autism dispute.
Inarguable disabilities and meaningful distinctions aside, the perceptions of what autism is, what autistics can and cannot do, and what goes on in autistic minds are often carried on without any evident fact checking, or even the simplest and most obvious step of fact-checking with an autistic.
This very curious situation is typical when a group wishes to insulate itself from people or ideas that might call their fundimental assumptions into question. It's of course, unethical and corrupt, but the problem is actually far more fundimental. It makes it impossible for a group (Autism Speaks) to gain any practical insight into autistic persons if they create an institutional culture that precludes even speaking to the primary data source. This makes the entire excercise self defeating, even calling into quesion the validity of research they might actually do, and further, lends fuel to the broadening perception that they exist mainly to extract money from the gullible in order to do very little at a very high price.
I state these things as things that are being said, and being responded to in ways that seem unconvincing at best. It's not really important to me at this moment what is true here, again, we are speaking to a larger point. These perceptions directly interfere with even the illegitimate goal of sucking money out of the autism community. It would certainly be easy enough to scrounge up a credible enough aspie and contrive circumstances that would cause them to speak and act in ways placiate criticsm even if there was no better motive than to placiate critics.
We must reluctantly conclude the possiblity that we are dealing with delusional behaviors and that autistics and aspies are being seen as some sort of visceral threat. To what, one wonders?
I'm afraid I can't tell you. I am on the spectrum and I've been faced with this my entire life, yet I still do not understand. And as I've passed the half century mark, I'm coming to doubt that there is a rational explaination. That's why I've started to look past the immediate consequences to me of particular manifestations and look for something that I can actually hang a useful thought on. And, again, over the years I've come to realize that I was dealing with exactly the same sort of people in many different sorts of circumstances and every time the point where communication ceases is when it becomes obvious that their fundimental belief structures are being called into question by facts and circumstances.
It can be called denialism, and it leads to many very bad things and manifestly stupid and deadly courses of action. Nor, I am deeply relieved to find, am I alone in seeing this phenomonon, seeing it as a unifying thread beween many seemingly separate, but critical issues. Hence, I'm linking to the Denialism Blog, here and in the sidebar. This is an excerpt from a very cogent explaination of what the blog and the phenomonon are.
The Hoofnagle brothers (those handsome lads pictured at the left) started the denialism blog quite a while ago because they saw a pattern. Certain issues in science and the news seemed to attract a certain type of wacko. For example, there is a large and somewhat influential community that denies that HIV causes AIDS. This pissed them off. What the Hoofnagles recognized is that this "denialism" may infect many issues (AIDS, global warming, the Holocaust, evolution, to name a few), but the tactics, the logical errors, remain the same. People who deny the Holocaust happened use the same tactics as those who claim AIDS is something other than HIV infection. Those of us who follow these (very harmful and often hateful) movements have noticed how the people involved use certain tactics over and over to try to show the public how "reasonable" they are.
The study of denialism roots out these tactics, reveals these patterns, and shows these folks to be what they really are---charlatans, hate-mongers, corporate shills, and sometimes just poor, deluded souls.
Of course, if the manifest insanity of Denialism is is so pervasive, how can we rid ourselves of it? What can we do?
Three of the simplest things imaginable. First, do not delude yourself that you have the right to displace your costs onto other people. Second, dissocciate yourself, mentally and financially from institutions that are based on on denialistic thought Third do not accept even trivial costs imposed upon you that exist only to empower the agendas and validate the ideals of others.
You see, for the vast majority of human beings, there is no way that this can be an effective power exchange - because if it were to work out equitably in theory, we would not have extreme concentrations of power with equally extreme pockets of consequence - like, prisons, leaky toxic waste dumps, Africa and the US Congress. There are two things you can take for granted; anyone who tells you that you are entitled to a free lunch is lying, and that the free lunch itself will cost you at least twice what you'd have been willing to pay in an honest transaction.
While it's never possible to ensure that a particular action has no consequential negative effects to others, we can and should start by at least asking ourselves if we do this thing, then what consequences to others may be predicted according to what we do know. And if we all do that, consciously and conscientiously, to the best of our imperfect ability, we will absolutely make this world suck far less for far more people than we could possibly imagine, and it will impact us and improve our own lives a great deal more than most people would consider possible.
Moreover, it's something you become better at with practice - once you perceive that such choices are both possible and ultimately rewarding.