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Dec 21, 2004

DON'T "CURE" US! JUST LEAVE US ALONE!

by Liberty and Power

I have occasionally mentioned the work of Thomas Szasz, a man who is one of my great personal heroes. Dr. Szasz's dedication to genuine human freedom and his ongoing resistance to the widespread destruction caused by the"therapeutic state" constitute one of the truly great achievements of our time, and his work deserves your very careful consideration. Look over his website, and read some of the many illuminating articles you will find there.

In connection with the story discussed below, consider these excerpts from a Szasz article which appeared in USA Today ("Mental Disorders Are Not Diseases"; emphasis added):

I maintain that the mind is not the brain, that mental functions are not reducible to brain functions, and that mental diseases are not brain diseases--indeed, that mental diseases are not diseases at all.
When I assert the latter, I do not imply that distressing personal experiences and deviant behaviors do not exist. Anxiety, depression, and conflict do exist--in fact, are intrinsic to the human condition--but they are not diseases in the pathological sense.
...
The core medical concept of disease is a bodily abnormality. Literally, the term"disease" denotes a demonstrable lesion of cells, tissues, or organs. Metaphorically, it may be used to denote any kind of malfunctioning of individuals, groups, economies, etc. (substance abuse, violence, unemployment, et al.).
The psychiatric concept of disease rests on a radical alteration of the medical definition. ...
[I]n Psychiatric Diagnosis, Donald Goodwin and Samuel B. Guze, two of the most respected psychiatrists in the U.S., state:"When the term `disease' is used, this is what is meant: A disease is a cluster of symptoms and/or signs with a more or less predictable course. Symptoms are what patients tell you; signs are what you see. The cluster may be associated with physical abnormality or may not. The essential point is that it results in consultation with a physician." According to these authorities, disease is not an observable phenomenon, but a social relationship.
...
Linguistic considerations help to illuminate the differences between bodily and mental disease, as well as between disease and diagnosis. We do not attribute motives to a person for having leukemia, do not say that a person has reasons for having glaucoma, and would be uttering nonsense if we asserted that diabetes has caused a person to shoot the President. However, we can and do say all of these things about a person with a mental illness. One of the most important philosophical-political features of the concept of mental illness is that, at one fell swoop, it removes motivation from action, adds it to illness, and thus destroys the very possibility of separating disease from non-disease and disease from diagnosis.
...
Nowadays, names routinely are given not only to somatic pathology (real or bodily diseases), but to behavioral pathology (psychopathology or mental diseases). Indeed, if we propose to treat misbehavior as a disease instead of a matter of law or social policy, we name it accordingly (for instance,"substance abuse"). Not surprisingly, we diagnose mental illnesses by finding abnormalities (unwanted behaviors) in persons, not abnormalities (lesions) in bodies. That is why forensic psychiatrists"interview" criminals called"patients" (who often do not regard themselves as patients), whereas forensic pathologists examine body fluids. In the case of bodily illness, the clinical diagnosis is a hypothesis, typically confirmed or disconfirmed through an autopsy. It is not possible to die of a mental illness or to find evidence of it in organs, tissues, cells, or body fluids during an autopsy.
To summarize, anthrax is a disease that is biologically constructed and can, and does, kill its host. Attention deficit disorder, on the other hand, is socially constructed and cannot kill the patient.
...
In short, psychiatrists and their allies have succeeded in persuading the scientific community, courts, media, and general public that the conditions they call mental disorders are diseases--that is, phenomena independent of human motivation or will. Because there is no empirical evidence to back this claim (indeed, there can be none), the psychiatric profession relies on supporting it with periodically revised versions of its pseudo-scientific bible, the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders.
...
Because the idea of mental illness combines a mistaken conceptualization (of nondisease as disease) with an immoral justification (of coercion as cure), the effect is two-pronged--it corrupts language and curtails freedom and responsibility. Because psychiatrists have power over persons denominated as patients, their descriptive statements typically function as covert prescriptions. For instance, psychiatrists may describe a man who asserts that he hears God's voice telling him to kill his wife as schizophrenic. This"diagnosis" functions as a prescription--for example, to hospitalize the patient involuntarily (lest he kill his wife) or, after he has killed her, to acquit him as not guilty by reason of insanity and again hospitalize him against his will. This coercive-tactical feature of psychiatric diagnosis is best appreciated by contrasting medical with psychiatric diagnosis. Diagnosis of bodily illness is the operative word that justifies a physician to admit to a hospital a patient who wants to be so admitted. Diagnosis of mental illness is the operative word that justifies a judge to incarcerate in a mental hospital a sex criminal who has completed his prison sentence.
...
If we restrict the concept of treatment to a voluntary relationship between a medical practitioner and a competent client, then a coerced medical intervention imposed on persons not legally incompetent is, by definition, assault and battery, not treatment. Psychiatry is thus a systematic violation of this legal-political principle, one that is especially odious because most persons treated against their will by psychiatrists are defined as legally competent--they can vote, marry and divorce, etc. It is important to keep in mind that, in a free society, the physician's"right" to treat a person rests not on the diagnosis, but on the subject's consent to treatment.
Regardless of psychiatric diagnosis, the typical mental patient is entitled to liberty, unless convicted of a crime punishable by imprisonment. If that patient breaks the law and is convicted, then he or she ought to be punished for it as prescribed by the criminal law. In a free society, a person ought not to profit from psychiatric excuses or suffer from psychiatric coercions.

With the considerations identified by Szasz in mind, take a look at this absolutely fascinating story in The New York Times:

BOICEVILLE, N.Y. - Jack Thomas, a 10th grader at a school for autistic teenagers and an expert on the nation's roadways, tore himself away from his satellite map one recent recess period to critique a television program about the search for a cure for autism.
"We don't have a disease," said Jack, echoing the opinion of the other 15 boys at the experimental Aspie school here in the Catskills."So we can't be 'cured.' This is just the way we are."
From behind his GameBoy, Justin Mulvaney, another 10th grader, objected to the program's description of people"suffering" from Asperger's syndrome, the form of autism he has.
"People don't suffer from Asperger's," Justin said."They suffer because they're depressed from being left out and beat up all the time."
That, at least, was what happened to these students at mainstream schools before they found refuge here.
But unlike many programs for autistics, this school's program does not try to expunge the odd social behaviors that often make life so difficult for them. Its unconventional aim is to teach students that it is O.K. to"act autistic" and also how to get by in a world where it is not.
Trained in self-advocacy, students proudly recite the positive traits autism can confer, like the ability to develop uncanny expertise in an area of interest. This year's class includes specialists on supervolcanoes and medieval weaponry.
"Look at Jack," Justin pointed out."He doesn't even need a map. He's like a living map."
The new program, whose name stands for Autistic Strength, Purpose and Independence in Education - and whose acronym is a short form of Asperger's - is rooted in a view of autism as an alternative form of brain wiring, with its own benefits and drawbacks, rather than a devastating disorder in need of curing.
It is a view supported by an increasingly vocal group of adult autistics, including some who cannot use speech to communicate and have been institutionalized because of their condition. But it is causing consternation among many parents whose greatest hope is to avoid that very future for their children. Many believe that intensive behavioral therapy offers the only rescue from the task of caring for unpredictable, sometimes aggressive children, whose condition can take a toll on the entire family.
The autistic activists say they want help, too, but would be far better off learning to use their autistic strengths to cope with their autistic impairments rather than pretending that either can be removed. Some autistic tics, like repetitive rocking and violent outbursts, they say, could be modulated more easily if an effort were made to understand their underlying message, rather than trying to train them away. Other traits, like difficulty with eye contact, with grasping humor or with breaking from routines, might not require such huge corrective efforts on their part if people were simply more tolerant.
Spurred by an elevated national focus on finding a cure for autism at a time when more Americans are receiving autism diagnoses than ever before - about one in 200 - a growing number of autistics are staging what they say amounts to an ad hoc human rights movement. They sell Autistic Liberation Front buttons and circulate petitions on Web sites like neurodiversity.com to"defend the dignity of autistic citizens." The Autistic Advocacy e-mail list, one of dozens that connect like-minded autistics, has attracted nearly 400 members since it started last year.

The rest of the article has additional compelling details, including this one:"The neurologist Oliver Sacks, for instance, contends that Henry Cavendish, the 18th-century chemist who discovered hydrogen, was most likely autistic."

The debate about the particulars of this controversy is irrelevant to the most critical issues here. First, there is overwhelming evidence that our society -- which insists, as Szasz puts it, on"medicalizing" every condition which fails to follow the demands of conformity -- diagnoses ailments and"problems" where no problems exist for the most part. When more and more children are forced to take Ritalin every year (see this Szasz article on that subject), you are witnessing a society which grows closer and closer to 1984: a world where individuality is crushed at every turn, and every form of"deviance" must be" cured." Similarly, when an astonishing and increasing number of Americans is diagnosed as “suffering” from autism, you can be certain that something has gone wrong on a fundamental level.

Second, I've been discussing Alice Miller's pioneering work on the roots of adult cruelty in early child rearing practices in a long series of essays. (I'm in the process of reposting those essays at my new site, necessitated by technical problems with the old one; you will find the ones currently available here.) As Miller points out, adults routinely inflict unimaginable cruelty on children and defend it all by contending the adults do it"for the child's own good." In fact, such efforts are directed at eliminating all traces of the child's authentic, vital self. The NYT story has several clues that it is precisely this mechanism that underlies much of the treatment of autistic children. For example, consider this statement from one parent of an autistic child who derides those who think is is"okay" to be autistic:

I intend to cure, fix, repair, change over etc. my son and others like him of his profound and typical disabling autism into something better.

Never mind what his son might want. This man will" cure, fix, repair, change over, etc." his son -- as if his son were no different from a defective car engine.

Then consider these statements:

The touchiest area of dispute is over Applied Behavior Analysis, or A.B.A., the therapy that many parents say is the only way their children were able to learn to make eye contact, talk and get through the day without throwing tantrums. Some autistic adults, including some who have had the therapy, say that at its best it trains children to repress their natural form of expression and at its worst borders on being abusive. ...
"Behaviors are so often attempts to communicate," said Jane Meyerding, an autistic woman who has a clerical job at the University of Washington and is a frequent contributor to the Autistic Advocacy e-mail discussion list."When you snuff out the behaviors you snuff out the attempts to communicate."

It is undoubtedly true that"behaviors" are very often"attempts to communicate." Szasz and Miller talk about this phenomenon throughout their work. But rather than attempt to understand the content of what their children are trying to communicate, the parents dedicated to"fixing" them want only to make their children like"normal" children. Never mind that the individuality and the humanity of their children might be destroyed in the process.

And this raises an additional question in my mind: to what extent might autistic behavior represent an attempt to communicate that earlier abuse of the child has already occurred? I would be very interested to know of any research setting forth detailed family histories of autistic children, including how they were treated in the very first years of life, and I wonder if such research has even been done. I suspect it might be very instructive.

I also think it might well reveal a great deal of parental abuse. In support of that contention, look at this passage about one mother who says she is"afraid" of the movement that seeks to remove the stigma from autism:

Ms. Weintraub's son, Nicholas, has benefited greatly from A.B.A., she said, and she is unapologetic about wanting to remove his remaining quirks, like his stilted manner of speaking and his wanting to be Mickey Mouse for Halloween when other 8-year-olds want to be Frodo from"The Lord of the Rings.""I worry about when he gets into high school, somebody doesn't want to date him or be his friend," she said."It's no fun being different."

You might have thought parents of autistic children were concerned with weightier matters. But note what Ms. Weintraub worries about:"quirks" such as her son wanting to be Mickey Mouse for Halloween, that somebody might not want to date him, and that he might be"different." All of this speaks directly to the themes Miller discusses in her books. I will state the obvious: Ms. Weintraub’s concerns are not concerns about her son and his well-being at all. They are statements about her own insecurities and fears. All the rest is window-dressing and rationalization.

Finally, think about the following. Every single one of the arguments used to justify"fixing" or"repairing" autistic children has been used in the past with regard to other"illnesses." I myself heard all of them as a teenager in the 1960s coming to terms with being gay. As I've discussed before (here, for example), I was even encouraged to undergo electroshock therapy, to" cure" me of homosexuality and make me straight. That way, I wouldn't have to worry about not having friends or having a date (at least, with a girl), or being"different."

I declined that offer -- and I am thrilled to see these children and their families resisting the calls that they be" cured" in much the same way. The extent to which our society -- nominally dedicated to individualism and personal freedom -- demands that everyone be essentially identical and cut from the same mold is astonishing. And the costs of all kinds exacted by those demands are terrible -- and the greatest cost is the destruction of the genuine, authentic person, even if it is a person who has tics and other behaviors that make"normal" people uncomfortable.

I had thought that, in certain ways at least, we had reached the point where we were beginning to celebrate our differences, rather than viewing them with suspicion, condemning them and always trying to"repair" them. But this story shows yet again how far we still have to go -- and how much damage we inflict on innocent victims in the meantime.

(Cross-posted at The Light of Reason.)

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More Comments:

Tricia Offer - 4/17/2009

I've thought about Alice Miller a little before this.
"It's for their own good" is used to falsely justify many abuse and oppression situations, not just child abuse.
Pardon me if I haven't read enough, but I disagree on the issue of violently "mentally ill." If someone is threatening to kill someone, they must be stopped. Nobody should wait until after the person commits the crime.

Teri Lester - 1/2/2005

You said "If you read the NYT article, you'd read that autistics are not against help, only help that harms autistics in some way. Which is a human rights issue, not an issue of "functioning level". "

The group of autistics referred to in the article is actively engaged in attempting to prevent parents from having access to treatment that has been proven to help a significant percentage of autistic children improve their functioning. Their contention that this sort of treatment "hurts" the children is exactly the problem.

I'm really not sure what your point about "high-functioning" and "low-functioning" is. My point is that someone who has very limited communication has less function than someone who has less limited communication. I don't see that as a "label" but as a reality.

Teri Lester - 1/2/2005

Max, don't know if you'll read this since I am answering over a week later.

I was responding to these two sentences: "Also, Silber has not responded what he might exactly define as parental abuse, so I can only guess.

"I'd be delighted if you pointed me to factual evidence for the opposite aside of your own problematic life, to show that your view is not solitary."

You appeared here to be asking me to seek out proof that parents of austistic children (a group which I belong to, despite your phrase "aside of your own problematic life") do not abuse their children.

And, for the record, we did not reprimand our child for his behavior even before he was diagnosed. As a matter of fact, we were so laid-back and desiring to support our childrens' individuality that it took an outsider to point out to us that our son's behavior really was something to be concerned about (and not any sort of negative behavior, but his lack of interaction and response to other people). What I had taken to be a certain aloofness as a way of coping with the noise and chaos of a small apartment filled with a family of five turned out to be the social deficits of autism.

The major point that I object to is using the fact of a child's autism as "evidence" of wrongdoing on the parents' part. It is no better science than was used in Salem.

Autism, in the DSM IV, can only be diagnosed when a specific combination of deficits are present. It's like one of those Chinese meals where you get one from column A and two from column B.

Abuse or trauma can produce some of the same symptoms of social deficits and communication disorders, but a refusal or inability to speak as a result of psychological trauma is not the same thing as the type of language deficit that defines autism. To take the fact that some of these deficits can result from abuse, and extrapolate that anyone who has those deficits may have been abused is superstition, not science.

A M Baggs - 12/25/2004

If you read the NYT article, you'd read that autistics are not against help, only help that harms autistics in some way. Which is a human rights issue, not an issue of "functioning level".

Low-functioning, severe, etc, all were labels that were used in order to justify giving me some pretty awful things that were mis-labeled treatment. They were used to keep so-called high-functioning autistics from saying things that would have been way better for me than what was happening to me. Not all *that* long ago. I've checked the dates. They all match up. Now high-functioning, mild, etc, are labels that are used to discount what I have to say. Including, yes, by you. Human rights know no real, apparent, or imagined functioning level. I am grateful to the so-called "high-functioning" autistics who wanted to interfere with the "treatment" I was receiving (it was *called* treatment, thus some very awful things were considered justified despite the fact that they harmed me).

It was one of those "high-functioning autistics" who later taught me to reliably communicate, by the way. Which was more than any "treatment" I'd received could have possibly done. But of course she was, and is, considered to be someone who doesn't believe in helping autistic people, just because she happens to believe that helping a person learn to communicate was good but that "treatment" that violated certain human rights or tried to mold me into a non-autistic shape wasn't.

Also, please don't assume that because communication has improved means that I'm suddenly able to do lots of things (besides communicate) now (in fact I've become significantly less able to do some other things in that time period). Because communication is one tiny part of "functioning". So please don't congratulate me on how well I supposedly function (a broad term) until you've spent enough time around me to know what you're talking about. I'm not a functioning level, I'm a person. I've been described as both extremes and I'm tired of the assumptions that go along with each one.

And no, I don't think I'd be allowed to speak for myself. Not myself as I was labeled in the past. Because I already know that autistics attempting to -- not "speak for", but *ADVOCATE* for -- the person I was back then, were rebuffed in the exact same manner you're rebuffing me now.

But I'm not sure there's a point to this. I've had this conversation so many times recently that I think some people just simply don't read the articles closely, or they'd see nobody's advocating not helping us, and that our attitudes have nothing to do with the so-called severity of our autism (people who say these kinds of things range from people *still currently* labeled low-functioning to people *currently* labeled super-high-functioning Asperger's). But the strawman version of our views is argued against far more often than the real version.

Max Swing - 12/24/2004

I never said you would abuse your child? I not even implied it once, but there also may be cases where it is not about gentle caring parents, but the total opposite.
Perhaps, those parents don't understand what actual their child is or has and thus they think it is doing it on purpose.
I grant that those families are most likely the minority, but they might exist.

I am also very critical of Mr. Silber's point and he didn't make clear what counts into "parental abuse" and what not.

I can understand that you are enraged about such an accusation and I don't say that you have to disprove any guilt.
I'm merely implying that first of all the government should be left outside any home to interfere with the children.
Secondly, I think it is always a good thing to giver parents a kick to think about their children thouroughly and whether something is good for them or if it is just good for the parents.

I believe that Mr. Silber is going too far in many points within his text and I don't agree with a lot of issues and I didn't say so.
But still he has a point on some issues along the way. And I don't deserve being attacked for something I didn't say.
Correct use of language is something I am very concerned with and if I have used it the wrong way, I am sorry, but I don't deserve being pricked on something I didn't mean and voice.

Merry Christmas

Teri Lester - 12/23/2004

Max, in what universe do I have to prove that I am not abusing my child, rather than an accuser proving that I do?

Teri Lester - 12/23/2004

A.M. Baggs,

You are quite welcome to speak for yourself. I am opposed to you or other high-functioning autistics speaking for my severely-impaired son. That is the basis of all my communication.

I am very happy for you - really, really happy - that you are able to function so well. I wish the same for my son, but it will not happen without some significant intervention.

I think it is unethical for one autistic person to try to prevent another autistic person from getting treatment.

Max Swing - 12/23/2004

No, I am not an expert on autism, but I found nothing that could truly back up the one or the other point on the net. Of course, there may be huge ressources somewhere, but I just have to trust Silber on this point.
I should have said there is no data available to me anywhere near and since you didn't present any examinatable data to the contrary, we cannot come to a profund conclusion. Also, Silber has not responded what he might exactly define as parental abuse, so I can only guess.

I'd be delighted if you pointed me to factual evidence for the opposite aside of your own problematic life, to show that your view is not solitary.

Max Swing - 12/23/2004

There, there, I think the two responses might seem to be opposite in position on the first glance, but as we look deeper into themk, they are not so contradictionary.

As I understand it, there are many different "levels" or stages or even forms of autism. As Teri said above, her child couldn't even imagine or see enjoyment in its life and you can understand her desire to speak with the child. Her ways of positive reinforcement may work or not, but they are not condemnable, because we are talking about two different realities if you want it that way. Also, another autist with a different kind of shape to it can not speak for this autist, as I see it, because they can be gravely different and thus not easily comparable.

On the other side, Mr.Baggs seems to be quite aware of his existence and of course, as a self-concious entity in this reality, he has a right to go his own path without prescriptions of any government or institution.
So, I think Arthurs has to extend his knowledge on more than one type of Autism.

The measures should be applied on the kind of autism that they are related to. It's a difficult topic, because you can't really imagine how it is if you are not in this position. And I don't know whether one autist could possibly do it with a different one, because they might be completely different in shape and type of their autism.

Graham Charles Lester - 12/23/2004

A.M Bragg,

I think you misunderstand ABA. ABA is about empowering autistic people. Almost all of today's ABA practitioners have completely abandoned the aversive practices that were used in behavior modification in the past. Today the emphasis is on positive reinforcement and it is the autistic individual, not the ABA practitioner, that determines what that reinforcement consists of.

Nobody in their right mind wants to deny autistic adults the right to determine their own destiny and live as they please.

But those of us who have children who are unable to communicate clearly in any form of language, children who are unable to acquire even the most basic skills, children who are unhappy and at times in obvious agony as a result of their condition, want those children to have access to the most effective therapies available.

A M Baggs - 12/22/2004

Then why was I denied the right to live as I pleased for so long and called low-functioning, and then as soon as I was able to say anything about it I was called high-functioning and told that my opinions didn't apply because I was now called high-functioning? It's not like every other aspect of autism fell away from me suddenly because I could reliably communicate, in fact some have intensified since then.

Kit Weintraub has publicly defamed autistic people. She has mischaracterized an entire human rights movement as an autistic supremacy movement just because she didn't agree with one autistic woman's views of ABA, and mischaracterized that woman horribly without even knowing her, leading to a massive attack on that woman's credibility by other people who didn't even know her (and who told outright lies about her). She has openly declared that she does want to interfere in her "mildly quirky" (are you going to try to call him low-functioning too???) son's ability to do as he pleases on such harmless things as what he wants to be for Halloween. How on earth can you call her heroic? What about the autistic woman who stood up for what she believed in in the face of a full assault on who she was from Kit Weintraub, Lenny Schafer, and anyone else they could gather up? Why isn't she heroic?

I do agree that autism is not caused by bad parenting. That's about the only thing I agree with you on.

Maybe you'd like to come visit me for a day here in California. That's my standing offer to people who claim in their ignorance to know how I "function" in the world just because I can write. Please stop drawing lines that don't exist.

A M Baggs - 12/22/2004

http://www.autistics.org/library/time.html
http://www.autistics.org/library/dawson.html

I wish people would read these things before saying the same old things to us. By the logic of most people who say these things, I am not allowed to speak for myself, at least the person I was as described in the first article. That person must always, by others' logic, be spoken for by people who are non-autistic and therefore are likely to understand far less intuitively about autism than autistic people do. And that person is described routinely as non-communicative, when in reality despite a lot of time around autistic people with that exact label I have never met a person who is truly non-communicative.

I was also, for reference, referred to as incapable of self-awareness and as never having developed a personality, and brain scans were cited in all of this. I would like to know how people can tell what we do and don't understand, from observing us from the outside. I would like to know if people know what it feels like to have other people dismiss your mind, in front of you, as an empty shell. I would like to know why it is that so many autistic people, after gaining a means to communicate, some of whom had previously been given IQ scores under 40, end up saying we understood far more than we were ever given credit for. How many said that many things we were doing were communication, how that communication was either not noticed or punished, and so forth. Why would this be true if everything that everyone assumes about us were true.

Why it is that other people think they can assume that in autistic people behavior and understanding are correlated in the same ways as they are in non-autistic people? We are so often both overestimated and underestimated. If someone knows I understand what cars are they think I can cross a street safely, and if they see me walk into traffic they assume I don't know and/or care what cars are. Why can't people just admit their ignorance instead of declaring in blanket statements that we can't understand something or can understand something? I think understanding ignorance is fairer and makes the world more interesting.

But as communication goes, we are generally only allowed to say what a particular group of parents wants to hear. If we do that, they don't question our ties to autism nearly as much. If we start saying things they don't like, they start telling us we're anomalies who have nothing to do with their children. If instead of co-administering autistics.org I were administering a site where I talked about how much I loved my behavior program (believe me I didn't), I am certain that a lot of parents would suddenly overlook what they viewed as my difference from their own children.

I remember, still, vividly, going to a FEAT meeting near where I live. I don't usually go to things like that. I remember one man there, who was stunned by my appearance. He couldn't get over that. "But you look just like my son. But when you type you sound intelligent. But you look just like my son. If I saw you on the street, I wouldn't know." He realized that day that he didn't really know how much his son did or didn't know just because he happened to act a certain way, and decided to get to know his son better as whoever he was. On the net, of course, where my most obvious talent is apparent and people can't see what happens the rest of the time, people make other assumptions. (I know autistic people who encounter the opposite problem -- they can't handle standard grammar or syntax, so they look very odd on the net but not as odd offline.)

It is not known what is inside someone whose mode of communication is not standard, but I wish it was more often admitted. And I wish that those of us who were once written off were allowed to speak for the people we were when we were written off, instead of told we're essentially a different species from our own selves. Either we can speak or write or sign or something, and therefore get told we know nothing of autism, or we can't, and people keep on making the same decisions for us assuming that non-autistic people know best. Either way we're powerless, and that's a big part of what the autistic liberation movement is about ending.

Teri Lester - 12/22/2004

Civilians such as yourself do not understand the vast implications of "unable to speak." In my son's case, it is not a physical impairment of the vocal mechanism. The entire language center in his brain is dysfunctional. He does not have syntax, cannot use syntax, which means that even though he can learn a few words, with a great deal of effort from both him and a teacher, he does not have the capacity to join those words together.

Thus he is not capable of any abstract reasoning. This means:
He does not understand "danger"
He does not understand "time"
He does not understand "I"

I assume that his condition is less than ideal, because with his lack of ability to think in language his resources for self-entertainment and self-enjoyment are extremely limited. Basically, he suffers from extreme boredom. If someone is not actively playing with him, he has very few resources to entertain himself. If someone is not actively protecting him, he is quite likely to harm himself, because he does not understand how things work. He knows that a stove is hot but he does not know that tugging on a bookcase will make it fall over on him, because the only way he learns is through reptition. He doesn't learn from something that only happens once.

He doesn't know that a knife will cut him - the only way that he could learn that would be to pick one up and cut himself, many times, and quite frankly I'm not willing to allow that to happen. Sorry if that's not accepting him as he is and all that.

Imagine that you did not comprehend the concept of time. Imagine if "later" was just another word for "no". Would that by definition be a happy existence, one that the rest of us should just accept and allow, so that you could be your own self? (Of course, despite the fact that you have no concept of "self" or any ability to self-reflect.)

Forgive me if I'm so selfish that I would actually like to have a conversation with my son. Forgive me if I think it would be nice if he understood the concept of nouns and identities, and might just once or twice call me "Mom." But no, that would be some sort of horrible violation of his right to determine his own life path. Ewww, can't have that. Better to leave him locked in his own skull and completely dependent on others for every minute of every day of his life. That's self-determination for you, right?

Teri Lester - 12/22/2004

Max, how do you know that there is no data available? Are you an expert on autism?

Max Swing - 12/22/2004

What does Arthur define as "parental abuse" and I think you perhaps read it out of context, but this is for Mr. Silber to clarify.
I can only guess that he meant with parental abuse the notion of parents who cannot handle the hardship of caring for an autist child, to "fix" their child, to make it conform to society.
This is a natural undertaking of parents to shape their child in their own likings of what they think is good and just.
I don't think he is referring to partents being abusive in any other way than being overprotective.

However, I don't think that this would be a problem in most households, but rather some few. As he said there is no data available and he only made an assumption based on some texts he read.

Jennifer Radal - 12/22/2004

"And this raises an additional question in my mind: to what extent might autistic behavior represent an attempt to communicate that earlier abuse of the child has already occurred? I would be very interested to know of any research setting forth detailed family histories of autistic children, including how they were treated in the very first years of life, and I wonder if such research has even been done. I suspect it might be very instructive.

I also think it might well reveal a great deal of parental abuse. "

Regarding this quote, you must be an incredible [censored] or just insane.

-- Jennifer, mother to a 5 year old autistic son.

Max Swing - 12/22/2004

So, your point is that those who can't speak might be unhappy by definition and do not deserve to be accepted as they are? Shouldn't an autist be better suited to know how you feel as an autist than someone entirely without this "disability"?

But you also have a point, it is difficult to say whether those without a voice to our reality should be cured or not. For the parents, it would be quite a relief if those cases could be "brought back to reality" as the above post of an angry father showed. However, I'd not leave aside that those children might have abilities never before seen and thus you should approach them with respect, but also lend them the training and help they need to face this reality, too.

So, I think that both Mr. Silber and you are right. Those who can speak for themselves should do it, but they should not apply their ideology collectively on all states of autism.

Teri Lester - 12/22/2004

You quote Dr. Szasz:

"In the case of bodily illness, the clinical diagnosis is a hypothesis, typically confirmed or disconfirmed through an autopsy. It is not possible to die of a mental illness or to find evidence of it in organs, tissues, cells, or body fluids during an autopsy."

I believe that this may be a cause of your misinformation about autism. It is not a mental illness.

Autism is a brain disorder, and the effects are evident biologically and genetically. Autopsy and neuroimaging studies directly demonstrate that abnormalities exist in the brains of those with autism.

You can read more about it here:

http://web.sfn.org/content/Publications/BrainBriefings/autism.html

You might want to do just a speck more research before you write defamatory remarks about parents and families caring for severely disabled individuals. Further research would show that there is a wide spectrum of individuals with the diagnosis of autism, ranging from those whose impairment is so mild that they are able to give interviews to newspaper reporters, to those whose brains are so severely malformed that they have little or no language at all.

I find it quite unjust that the mildly impaired would use their fantastic gift of communication to defame those who are completely unable to speak for themselves.

Graham Charles Lester - 12/21/2004

Dr. Silber, I wish you could come and visit my autistic son and me here in Kansas City.

I think you would realize within about five minutes how completely ignorant you are about the real challenges faced by those who are parenting severely autistic children.

I wish that for a few minutes you could watch my son writhing around on the floor in agony because of some undiagnosable brain disorder that in his case is simply labelled "autism."

Do you know how hard it is to clean faeces off of a bedroom wall? I do.

The last thing we parents need is to be accused of child abuse. That is so outrageous that it is positively amusing.

Bettleheim raised the blame-the-parents theory decades ago. It has been thoroughly discredited. Check out an Introduction to Psychology textbook some day!

Kit Weintraub is a hero. She should get a medal.

Nobody wants to deny these high functioning autistics their right to live as they please, but not all people with autism are high functioning.

Sorry if I sound like a lunatic extremist!!!