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Difficult Choices
A conversation with a concerned parent

Copyright © 2009, Paul LutusMessage Page

Choices I | Choices II | Choices III | Choices IV

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Choices I

I found your page ["Asperger's by Proxy"] while researching various topics on Asperger's. I appreciate your viewpoint regarding the over diagnosis of "problems" and also eye-opening to read about the girl who died from clonidine — since a developmental pediatrician said we could consider clonidine for my daughter who she dx [diagnosed] with anxiety (but too young to decide on Aspergers)

Over the last year and a half, I've been pushing to find a problem with my child.
Interesting wording. I personally wouldn't want to be "pushing to find a problem" with a child. But remember — I am not a parent and I am not a psychologist. My opinion is just my own, not that of a mental health professional. Yes, I am sure to those on the outside, they would think what in the world, why would you want this diagnosis of some syndrome for your kid? More to the point, after reading the history of child psychology, why would you want your child to experience any of the available treatments? I don't want the diagnosis, but I do admit it would be a relief to not feel like her extreme behavior was my fault. This is a motive I discuss at some length in my articles — parents want the diagnosis because it frees them from the appearance of responsibility. But what does it give the child? I do have a younger child who is not like my oldest. I did not realize her tantrums were extreme until I saw that my second child did not have this problem, does not have many of her problems. The firstborn child has a different parental experience that the subsequent children, because the parents have zero experience. This by itself could explain the difference. I remind you again that I am just offering my personal opinion. She displays almost all "symptoms" of Asperger's. So does virtually everyone else! Asperger's doesn't have clear, unambiguous diagnostic criteria, and those diagnostic indicators that exist are present for many other conditions, including "normal but bright". The reason I "want" the diagnosis is because I want her to not be labeled as something else!! I discuss this also — Asperger's is an attractive diagnosis. But it can't compare to no diagnosis at all, an option you apparently won't consider. The stupid school system wants to label every kid. Under-achiever, trouble-maker, learning disabled, ADD, disruptive, gifted... the list could go on. Well, the labeling is inevitable ... No, it is not! It is not inevitable. You have to coöperate with the system to get the diagnosis. You have already said you want a diagnosis and you have given your reasons. All that remains is to choose one. And "human being" is not on the list of diagnoses. when your child is not 100% "normal" (yes, who is?, Evolution says there is no "normal". If we learn nothing else about evolution, we should learn this. The only constant is change. You hear "normal" a lot in psychology, but it is a myth — it's just an excuse to apply a label. And if the truth be known, your child's prospects for success in the adult world are directly related to how abnormal he or she is. but there are people that gravitate near normal and people who do not Are you aware that "normal" doesn't mean "aligned with the statistical mean"? In fact, in practice, a statistical normal range is more like +- 2 sigma from the mean, which encompasses about 95% of everyone. If you want to be more strict, you could argue for +- 1 sigma, or about 68% of everyone. But "normal" is never a single location, it is a range. I mention this because this focus on "normal" is nearly always based on one misconception or another. — she is one that does not — someone who will cry for an hour because you flushed the toilet behind her while she washed her hands?!!! Someone who tantrums like this despite the momma never giving into these displays?) Okay, that's useful to know. I was wondering whether she got some attention by throwing a tantrum. So, do I want her labeled as an under-achiever, trouble-maker, or ADD, or would it be better if she was labeled as Aspie and had an IEP [Individualized Education Plan] so that she was not put in remedial classes? My view is that Asperger's kids shouldn't automatically be placed in remedial classes — they are often bright and capable of substantial academic performance (Bill Gates, Albert Einstein, Thomas Jefferson). But in point of fact, Aspies are nearly always stigmatized as though they are handicapped — this is a terrible injustice toward people who often do very well as adults. She is extremely intelligent but socially awkward. Her inability to deal properly with her emotions should not place her in a class behind her other abilities, in my opinion. I suppose others would feel that if she could not learn like the other 85% of the class, she should be with the other 15%?

I feel pushed to this by "the system." :(
But you also want the diagnosis so people won't think you're a bad parent. I suspect this "system" argument may be a rationalization. Imagine what would happen if you said "no" to any labeling at all. But thank you anyway for writing this... I hope to read more on Aspies, conclude myself that she is (I already have, really) and then just drop the push for a diagnosis. I will instead just be her advocate when the world tries to push her around. I'd better put up my dukes, I think it's gonna be a long ride ;) If you were turning away from a scientific diagnosis and treatment plan, that might be different — but that isn't what's offered to Aspies. There is no known cause, there is no clear diagnosis, and there is no treatment. Oh, and FWIW, I did feel like you had a certain anti-female tone in your article. I was not looking for it, I'm not some over-zealous feminist... the tone was there. Imagine if the perpetrator in the story was male. Would I be accused of being anti-male? This is completely about women not being willing to hear criticism of women under any circumstances, something that stands as an obstacle to true gender equality. Finally, I feel Margaret Sanger was a racist who sought to keep the "undesirables" from reproducing. So it seems. Shall we throw out the baby with the bath water? I don't admire her. Would you deny abortion rights because of Margaret Sanger's eugenic views? This is a critical point: evaluate the idea, not the idea's source. The idea is the only significant thing, and to confuse the person with the idea is a classic failure of reason.

When we evaluate ideas, we must not allow ourselves to be influenced by the idea's source. To do so is like judging people based on the color of their skin — or their gender.

In discussions of evolution, I regularly hear from fundamentalists who want to bring up Darwin. When this happens, I realize what kind of person I am dealing with (someone who thinks in terms of personalities, not ideas), and I brace for the worst. Somehow they think if they can discredit Darwin, they discredit evolution. But ideas don't work that way — worthwhile ideas aren't responsible for the people who have them.

When I wrote "Asperger's by Proxy", I ignored gender distinctions and called a spade a spade — the story is about a woman and some traits she has in common with a small minority of women. To write it any other way would have been intellectually dishonest and would have perpetuated some false gender myths (for example, that there are no mental conditions unique to women, or that women should be above criticism).

I wrote the article in a evenhanded way, ignoring gender issues, and as a result, I regularly hear from women who haven't evolved past expecting women to be treated unequally, while at the same time demanding equal rights and equal pay.

I think rape is a terrible crime, and it is virtually always perpetrated by men. Does this make me anti-man? Why not? I think false sexual accusation is a terrible crime, and it is virtually always perpetrated by women. Does this make me anti-woman? Why?

Choices II

I saw your responses to the other woman who blasted you for being sexist. I did not blast you but did say I felt the tone too. Some people can state things without that tone, but your article had it. But an identical article about male rapists would never be condemned as sexist. When a man rapes a woman, the woman has a difficult time proving that the crime took place. The reason? Too many women lie about sex crimes, so it's reasonable to ask whether a real victim is lying. As it turns out, FBI Labs has shown that almost half of sex crime reports are false.

How shall I bring this to the public's attention without mentioning that it is a problem with a small minority of women (the exact wording in my article)?
You don't have to defend it, it was just my opinion. I am not defending my position, to be frank, I'm wondering about yours. When we read an article that condemns men, it's not likely to be described as sexist. For example, when Marilyn French says, "All men are rapists, and that's all they are", no one condemns the remark as sexist. The reason? Men don't think that way — we know the kitchen is hot, but we can stand the heat. And as you see I am not one to throw out the baby with the bathwater, because despite the tone I felt, I left your article with a different feeling than what I came with. In a positive way, which is why I felt compelled to write. The positive thing being that I can stop visiting doctors and looking for an official diagnosis and just accept that this is what I think myself and adapt my behavior to treat her the way she should be treated (just like any other kid.) Now that's a positive outcome! In my opinion, of course. I would think that would please you that you had a positive affect on someone. I am assuming that is the purpose of writing the article? :-) Yes, absolutely, and I am very pleased with this outcome. You need to realize this wasn't the thrust of your first message. (Also if I was one to throw the baby out as you say, would I want to take anything away from what you wrote? I think a narrow-minded person would say to themselves "Oh, someone that admires Ms. Sanger, well screw whatever he says.) But I don't admire Ms. Sanger, I admire one of her ideas. That is a very different thing. It is a sign of intellectual maturity to separate ideas from their sources. I did not say that I didn't want people to think I was a bad parent. Here's what you said: "I don't want the diagnosis, but I do admit it would be a relief to not feel like her extreme behavior was my fault." That says it pretty clearly. Of course that is true, I would say that is true of ALL parents, right? I think there is some truth to it, but some parents care a lot less what other people think. This is a measure of a person's individuality. A true individual can't be too concerned with what other people think — the personal sacrifice is too great. We are here to express our unique personal values, yes? I said it would be a relief to know there was something identifiably wrong so that I could grasp some way to deal with her in a way that would work, not in the way that people would say needed to happen. What happens if there is no answer? What happens if human psychology isn't scientific enough to offer anything but self-serving platitudes? Maybe you think I think too much about what other people think (follow?) and maybe that is true, but I would think it was pretty typical for people to be concerned about whether they are serving their children in the best way... That's a bit different from caring how your parenting appears to others. But I want to emphasize something — it's not irrational to care about that. We can exist independent of the views of others only to a certain degree, and in the final analysis we are hostages of the intolerant. But I am saying we shouldn't bend over backward to please the peanut gallery. and if that child has a special issue, then my treatment of her should probably adapt, right? There is a lot in that sentence. Is there a special issue, or will this child adapt and overcome in time? Is tough love a better approach than stigmatizing the child with a psychological diagnosis? How does the child view the diagnosis? If the child respects authority, she may respect the diagnosis as though it was made by a doctor (and a psychologist is not a doctor). This could easily have much worse long-term effects than simply negotiating with the child, setting firm limits, and seeing what course nature takes. Again, this is just my opinion. I didn't always think there was something wrong with her. I thought she was a normal and bright child. All her milestones were on target or advanced. But as her tantrums progressed while my friends with like-wise aged children matured in their behavior, I came to see that something wasn't right. I couldn't guess what was wrong with her for months. But I do have friends with children who are classically autistic, and they do the toe-walking, extreme tantruming and flapping. So that led me to research more into autism. I didn't even know what she was doing (the flapping) was anything, I never saw that listed anywhere except when my friend told me about her son and how he "stims." I was like, uh, ok, I didn't know that was a sign of a problem, I thought that was normal. Never paid attention that other kids didn't flap when they played. Haha. Oh and then I became clued into the fact that her tantrums revolved around changes in her routine. It's important to emphasize that the Asperger's diagnosis has gotten attached to a wide spectrum of symptoms, and there are no clear diagnostic criteria — two practitioners won't necessarily assign the same diagnosis (a well-known problem in clinical psychology). I do not think all people display almost all Asperger symptoms. If you could see the statistics for clinical diagnosis, you would see my point. Virtually anyone can get an Asperger's diagnosis, in particular if the parent believes it's true. But on re-reading the original exchange, I see I seemed to be saying virtually everyone shows most Asperger's symptoms — that goes too far, and I should have expressed it differently. Aspie people can't pick up social cues. Let's just say that Aspies don't interpret social situations in a classical way. My [ ... ] year old has more social grace than she does at [ ... ]. Now of course she will have a different experience growing up in many ways because she is the first-born, but should that be the case with this kind of thing? I don't know, I only have two kids to compare LOL. She is oversensitive to sound. Not in the case of just being upset and covering her ears but when going to a performance and hearing clapping she becomes terrified and freaks out long after the sound has gone. Because her verbal skills are so good and were early, she didn't fall into traditional autistic diagnosis but she does have strange behavior that is noticed by people other than me. What's interesting is that Aspies often have superior intelligence and possess a high degree of verbal skill. I personally think that, given the histories of many adult Aspies, there should be some way to cultivate rather than stigmatize the condition. If Albert Einstein were born today, there is a good chance he would be sidetracked into "remedial" education, and we might lose his gifts.

This speaks to the issue of how intolerant society is toward those who are different, who don't lie near the center of the Gaussian curve. This may overstate the case a bit, but I much prefer to hear someone say, "I want my kid to be successful and happy" over "I want my kid to be normal." I think normal is overrated, and I wish we lived in a world more tolerant of those who are different.
You can't tell me that she will not be labeled. With this additional information, I would agree there is a high likelihood that she will be "labeled", but that is unfortunate nevertheless, because the label is all there is. I hope you don't think there is a "treatment" for Asperger's in any meaningful sense. She does not sit down for long and has trouble paying attention to some things, and other things she is obsessed with. Of course, typing that out you think yeah, that is everyone. It's not everyone. If you go to a first grade class, there might be one or two kids who are disturbingly fidgety, not just a little. You're now blurring diagnostic signs — Aspies aren't necessarily hyperactive. Some go into a private world and can't be reached. Some are genuinely bored with the academic content of public school — for reasons that may be legitimate. Those couple will just get out of their seats uncontrollably (it would seem) despite getting into trouble. Those kids are not going to be considered "normal" if the other 25 kids are sitting and doing their work, and these two are not. Can't sit still, can't focus, must be some problem. Ok, teacher calls the parents. Mom, your kid can't complete her work, won't sit still, she needs to be evaluated for ADD. So I am just supposed to sit there and say "she doesn't have ADD, she's just different. Deal with it." ??? I don't have a problem saying that IF I am truly convinced of it myself, know what I mean? I sympathize, but there is a vigorous debate about what to do then. Assigning a label is a typical first step, but the real problems follow from that. Wrong label, no treatment or ineffective treatment, pressure from the pharmaceutical industry who want you to believe there is a magic pill for every condition. In that scenario, I guess not only would we all walk away disgusted, we'd walk away labeling the other people. ;-) The teacher would be the a-hole teacher, and I'd be the jerk-parent of the hyperactive kid. Haha.

I think someone else responded to the next point. I can't remember, I was reading awfully late. Haha. But just because a diagnosis is over-used does not make it in fact a real problem that exists. Yes, I think ADD is over-diagnosed but I think it really does exist. Just like many psychological problems.
I ask you to think in evolutionary terms. First, the issue of "normal", which I discussed briefly in my last message — it's all too easy to be oversensitive to the issue of "normal" behavior. Second, does public school offer something worthwhile, or is it just a way to turn children into compliant drones? Some take the position that public school is really effective at cultivating a very high tolerance for utterly boring activities, but this might not be the best way to train children for adult life. And just so you know, I am not one of those people who has a therapist, believes in psycho-adjusting medications and can't wait to initiate my child into that system. Nah. I am more conspiratorial, and believe that shrinks have more to gain keeping us "sick" than with making us well. I am definitely a person that in general thinks "how could you give your kid all those meds, they are just "being kids." Good for you — if clinical psychology were more evolved, I might feel differently, but we're not there yet. I don't know if you are a parent. Nope, another reason to take everything I say with a high degree of skepticism. I am not a parent, I am not a psychologist, I think parents often try to program their children to be miniatures of themselves, I think society depends to an unhealthy degree on a small handful of creative misfits — people who, for one reason or another, escaped the system early on and became original thinkers. But even though I feel these things about psychology, living with a child that is so far different from your other child or friends children makes you question if there is something wrong with the child when everything in the mainstream does not work (so far as disipline and instruction.) If mainstream isn't working, you are going to move onto less mainstream, no? I hope you don't think I am going to offer any specific advice. I can't think of someone less qualified than I am. In reference to getting something out of her tantrums... that sounds so "Dr. Phil." Haha. No way — she tantrums, she gets nothing. Instinctively, to me that sounds like the right approach. I call it the "tough love" approach and I wish there was more of it. After all, this is all meant to prepare children for adult life, which is a lot of tough and only a little love. Her behavior is in fact better with me than other people who will tip-toe around setting her off and will give into her if she seems like she is gonna explode about something. It pisses me off that they do that, and therefore I am adamant that I will not do it (I am a stay at home mom so I am the predominat person here... but Daddy and Grandparents will give into her whimsy she gets away with more with them, but that doesn't keep her tantrums to zero with me) I cannot possibly describe to you *how* I know these tantrums are different from other tantrums, except to say that their length and intensity are extreme. Again, for 6-12 months (age [ ... ] till [ ... ]) I convinced myself she just had "extreme tantrums" until I saw all those other autistic flags pointed out to me.

I don't know if I addressed all your comments because I am trying to write this and care for my kids at the same time.
I'm sorry I'm not in a position to offer anything more than sympathy and a lot of well-founded skepticism toward the field of psychology.

Choices III

My point in bringing up the tone about the sexism was only to point out that I sensed what that other person did even though I did not agree with most of everything else she wrote (um, I think? I might have just skimmed after I saw her going off, haha)

If I said "blah blah those male rapist pigs..." that would be what, 85% or more redundant, right, since most rapists are male. Am I somehow trying to say that female rapists are not pigs? Why is it important for me to notate in this sentence that they are male? It's not, and by saying "those male rapist pigs!" it also does in turn sound sexist. I don't remember your exact wording but let's say it was just like "those women get attention by making their children ill" it comes off with a different tone than if you said "these people get attention by making their children ill, and they are predominantly women."
If women hope to become equal members of society, we need to avoid all this hand-holding — in fact, it represents an insidious kind of sexism (of the kind women demand). Men don't want or get this kind of treatment, the article discusses a condition that affects women, and put simply, it costs society more to treat women differently than men. One sounds sexist, the other sounds like you are stating fact. Only to ears tuned to some deeply buried, powerful sexist traditions. Also, I borrowed my wording from an official FBI report on Münchausen's. A quote: "The majority of people associated with MSBP are women."

The report goes on in the same blunt way, unashamedly describing these women and their bizarre behavior. The reason? There's no point in creating a crime survey if you can't identify the perpetrators. But how dare the FBI, in an official, tax-supported report, malign women this way!
If I am talking about welfare recipients, I can't expect to not offend someone if I say "those people" when in many circles the "those people" has been known to come off as racist. If I walk up to some guys hanging on my corner and say "you people need to go home" and the people happen to be African-American, you can bet I am going to upset someone by using "you people" even though they are people and I was directing my comment at them all therefore "you." It's just a nuance of language and of course being the written word, we can't always pick up the meaning 100%. That's a clear misuse of "us" and "them" in a context in which there should be no distinction made, which is why minorities object to it. But as to rapists, I am not going to say "we" but "them," since I am not a rapist. And most women will certainly say "them" about MSP perpetrators, since most women aren't included in the category. There is a place for terms like "us" and "them," just as there is a place for clear gender identifiers — at least, the FBI thinks so. The diagnosis — yes, agreed, it is for me and her. For me, to allow me to stop trying to change some parts of her personality and just lovingly shape her more than "tough love" her. But remember that your daughter will never be definable only as an Aspie or an ADD sufferer, or whatever. These labels have an insidious effect on everyone — it allows us to stereotype individuals in a way that is almost always destructive. For her, mostly to get a teacher who is saying she is ADD or "troublesome" or whatever to back the hell off and just follow an IEP so that she could get the best education possible - But that is certainly not what will happen. According to a school psychologist I had a conversation with, special education programs have a dismal record for conferring benefit. You might end up wishing you hadn't exposed your daughter to those "remedial" programs. She might be better off toughing it out in the mainstream, just as she will need to do as an adult — remember there is no "remedial" version of adulthood, and everyone is in the mainstream. with accommodations if that is what she needed due to something beyond her control, or beyond her mother's ;-) The "accommodations" include drugs, separation and isolation from the mainstream, a powerful social stigma, and possibly the beginning of a lifetime of reduced personal expectations. Me getting annoyed with her daily because she is often off in her own little world and wanting to change that or reprimand her for it — versus me just accepting this is her, she will always be like this, do not fight it but work to bring her up right despite it. Did you know that Einstein had the reputation of being off in his own little world, and his teachers uniformly thought he would accomplish nothing? This is not to say that all Aspies are Einsteins, only to say that outward appearances can be very deceiving. It is a hard balance to accept that she is emotionally immature and volatile and that she might always be this way BUT do not let me become a doormat because she must learn that regardless of her tantrums, she will not get her way with me or her way in the world. That sounds healthy. Again, just my personal opinion. If you think someone has an illness, you will have to work to treat them differently even if you are bringing them up along the same path as someone who is just stubborn, or being a brat, or whatever. You will be gentler, I think... I know I am. Please try to avoid thinking of your daughter as ill. It is the business of children to be different than their parents (evolution requires it), and some are more different than others. Maybe in a thousand or ten thousand years, everyone will be what we now call "Aspies." This is how evolution works — nature constantly tries new things, and nature really doesn't care whether someone fits in at school or makes parents happy.

If a child has a cold, I might describe her as ill, because it is a transient condition. For an Aspie, I think it's a bad idea to describe her as "ill" because it is not going to change, and illness can represent a serious handicap. Asperger's isn't necessarily a handicap, and we shouldn't send the signal that someone is permanently broken, particularly if it isn't true.

The richest American is an Aspie. Imagine if he had been shunted aside into "remedial" education and described as ill. Fortunately for Bill Gates, his parents didn't either know about, or care about, these destructive categorizations. As a child Gates got every kind of support one could hope for, and his adult life exemplifies a very positive outcome for an Aspie unencumbered by other people's negative thoughts and actions.

This is what burns me about clinical psychology's stance toward Asperger's — essentially, "You're broken and we can fix you." But neither of these claims is true — Aspies aren't necessarily broken, and psychology certainly doesn't have any meaningful treatments. This reminds me of psychology's position on homosexuality from the 1960's — homosexuals are broken and psychology can fix them. This was so obviously and embarrassingly false that, under pressure, psychology eventually removed homosexuality from its list of mental illnesses.

The reason we have wars, the reason for religious battles in which one group of True Believers tries to exterminate another group of True Believers, is because emotion is stronger than reason in the minds of average people. It turns out that Aspies are less ruled by emotion and more by reason than average people (at least male Aspies). In fact, it is symptomatic that an Aspie will simply not understand or experience certain "normal" emotions. This might mean Aspies represent an evolutionary step forward. I offer this just as a suggestion to think about Asperger's in a different way, not because it is a particularly strong argument (and there are equally compelling counterarguments).

It would be interesting to know the degree to which Aspies accept or reject religious ideas, and how they differ in this regard from average people. I don't think anyone has actually tried to study this — being too busy trying to "cure" them instead.

If children were meant to turn out like their parents and to fit in perfectly at school, childbearing would not exist, because it would serve no purpose. We would all live forever — or maybe we would all die of boredom — but the evolutionary point of childbearing is to create something new and unexpected. If you have time, read my article on evolution.

Choices IV

It was my understanding that an IEP allowed a special child to be mainstreamed and just required some considerations. I didn't know/think that an aspie would be in the less advanced class. According to school psychologists in my correspondence, "remedial" is the route often taken (it's sometimes the only available choice), and it was the outcome for the subject of my article "Asperger's by Proxy", a particularly bad decision in that case. What I want for her is advanced classes that consider her the way I do, different but smart. Someone who needs to be intellectually challenged and not "broken" (like a wild horse) into sitting all day in a chair. This is the way it ought to work (in my opinion), but it isn't necessarily the way it does work, once the label and category have been assigned. It's important to understand that the category shifts control away from the parent to psychologists and others, in spite of the fact that psychology is not a science and in spite of the fact that Asperger's has no known cause, no clear diagnostic criteria, and no meaningful treatment. But this isn't just my opinion — here's what the Yale Child Development Center has to say about Asperger's:

"Clearly, the work on Asperger syndrome, in regard to scientific research as well as in regard to service provision, is only beginning. Parents are urged to use a great deal of caution and to adopt a critical approach toward information given to them."

In short, you should be very careful about the steps you take. Some of them can reduce the control you have over your own child. And please remember that the primary role of public education is to create obedient citizens, not original thinkers.

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