Hi, my name is Hubert. I am 47 years old and I have Asperger's syndrome. Let me explain why I went through the trouble of creating this page:
The most devastating deficiency in the case of high functioning Asperger's syndrome, is our mindblindness. Our incapacity to visualize mindstates. The WANTS, BELIEFS, and INTENTIONS that drive other people's behavior. Without visualizing mindstates, we cannot MAKE SENSE of anything. We live in a world of constant CONFUSION, and we go through life making one blunder after another because of our total lack of common sense.
And yet, we can learn to compensate for our mindblindness by using our logic to figure out mindstates. It is rather easy once we learn how to do it, and once we learn, OUR TOTAL LACK OF COMMON SENSE DISSIPATES.
We adults can read the books and learn by ourselves. But Asperger children need their parents to teach them how to do it!!!
VERY FEW PARENTS seem to understand all this. And teaching your Asperger son is *CRUCIAL* if you want him to have a realistic opportunity OF GROWING UP TO LEAD A NEARLY NORMAL LIFE!!!
I would have to write a whole book to describe the endless misery that I had to go through for 45 years of my life until I learned to MAKE SENSE, and it would have been so easy to learn if my father had known how to teach me. But virtually nothing was known about Asperger's back in those days. We didn't even have the name, and were bundled together with the whole of the autistic spectrum. I saw the movie "Rainman" long before I knew that I had Asperger's and I never had a clue that we had anything in common. Even today, I do not even remotely identify myself with him. So what I write here, probably applies only to high functioning Aspergers.
And I write it in the hope that, at least, I will be able now to help others to avoid most of the misery that I had to go through myself.
When a person has a stroke and gets brain damage, depending on where the damage is, he may lose the use of face muscles or other part of his body. He may lose his speech or get a memory impairment.
He may also lose any other brain function that is not as easy to understand, visualize, or even believe. For instance, he may become prosopagnosic.
A prosopagnosic, or "face blind" person, has severe difficulties in recognizing people by their faces. If his case is bad enough, he will not even be able to recognize himself on the mirror.
Sometimes you don't need a stroke to get these things. Sometimes you are born with the damage.
I am prosopagnosic. I can only recognize a few people beyond my family. It is devastating, but unfortunately, I have further brain damage that is even more devastating.
I am also mindblind. I cannot unconsciously and effortlessly visualize the mindstates of others: Their WANTS, BELIEFS, and INTENTIONS. How do they FEEL. What they might be THINKING or WISHING.
And what made it much worse is that I never had a clue that I had these problems. Figuring these kind of things seems to be extremely difficult, even for those outside. The core deficiency behind autism remained a mystery for 40 years, until the British managed to figure it out a few years ago and one of their scientists, Simon Baron-Cohen, came up with a name for it: mindblindness, and also with the book by the same name.
I strongly advise parents to get a copy of his book. "Mindblindness" is available only in hardcover and costs $26, but those are the best $26 that I have ever spent in all my life. Its main subject is, of course, mindblindness, but it also goes into other deficits we have, including our inability to play "the social game of chess" and our incapacity to read "the language of the eyes."
Over countless generations of pre-humans, Natural Selection seems to have favored those individuals who could quickly come up with an accurate picture of what was on the minds of others. That is why all humans now (autistics aside) have the specialized neural mechanism to do this quickly, effortlessly, and unconsciously, without having to tax the normal conscious workload of the brain.
Natural Selection's decision was wise. A non-mindreading creature cannot hold a candle to one who can mindread. The mindreader will deceive, outguess, take advantage of, manipulate, fool, rob, and exploit the non-mindreader without mercy. If you don't believe this, ask me or any other Asperger adult.
I was studying high school at the military academy in Georgia. One day, I bought a new pair of shoes. The next day, I wore tennis to P.E. and I left the new shoes by the bed as I was supposed to do. When I came back, they were gone. Somebody had noticed that they were brand new and had stolen them.
I told the teacher in charge of our barracks that somebody had stolen my new shoes. He asked me if I wanted him to make an inspection to try to find them. I said yes, and while all the students stood at attention, I went through everything trying to find them. Although I didn't leave a thing unturned, I did not find them.
Afterwards, some of the students began coming into my room in little groups to tell me that they would give anything to kick my behind. Some of them even took the trouble to EXPLAIN to me why; that they had had to pick all their s--t from the floor, and that I was going to pay for it because they were going to wait patiently for an opportunity to kick my rear end.
I never realized that they were mad at me. It never crossed my mind to think that tossing their stuff on the floor was going to make them mad at me. I cannot remember getting a single thought or having any awareness of any kind about what the other students might think or how they might feel. In my train of thoughts, all that came into my consciousness was, first, the regret that my shoes had been stolen, and afterwards, the fright that I might get beaten up.
There was no need for that beating, other than giving my sister an opportunity to take her anger out on me. If she had EXPLAINED to me that people have feelings, and that they have likes and dislikes, and that they dislike finding poop on the floor, and that they dislike having to pick it up, I would not only had never done it again, but she would had made me a precious gift that I was DESPERATELY needing; she would had given me a little push toward understanding the world of humans. By beating me, she instead gave me a rule (if you poop again, I beat you again) that pushed me another bit toward behaving in a SUPERFICIALLY NORMAL way, and behaving in a superficially normal way only hid deeper the sad fact that I did not understand anything about anything.
(*) I wrote this paragraph almost two years ago, when I was starting to make sense.
I know very well now, 30+ years latter, that it is very offensive to say things like that. This guy was offended and angry with me. But why? I tried to put myself in his shoes and it didn't work. If somebody told me that he wanted to kiss my sister, I would realize that he has a serious problem because he is telling me something that I know now that is not socially acceptable to say, and I would have felt not angry but maybe disgusted and surely apprehensive. ("This guy is nuts .... what is he going to do next? .... attack me?") His getting angry instead of noticing that I had a very serious problem leads me to believe that he was kind of dense, but that is beside the point. Why was he angry? Recently I tried using pure logic. One YES equals two NOT's multiplied together. I turned the problem around: How would he had NOT been angry?
The only way he would have NOT been angry is if I had been his sister's boyfriend, NOT somebody who barely knew her.
So he was angry because I barely knew his sister. But I already knew that: A boyfriend has a right to kiss his girl but not a stranger. What I am unable to do is to figure out why he felt angry instead of disgusted and/or apprehensive.
I am not dense. I have an I.Q. of 130 (although in every day life this is very hard to notice because of all my devastating deficiencies.) I studied and understood advanced math without any particular problem. I have written very complex computer programs, including a three dimensional animated "world" in assembly language in a multitasking environment. And yet, I cannot figure out, even though I have given the episode considerable mental effort for more than a year, why would a guy get angry because I told him that I wanted to kiss his sister. It must sound like a joke.
From left to right:
Simon Baron-Cohen's "Mindblindness" is, in my humble opinion, the best book ever written about autism, but it deals only with mindblindness itself, and it does not go on into the next logical step: explaining the devastating effects of mindblindness on the Asperger's adult, and how to avoid them.
In fact, the book touches the subject, but only fleetingly. Anybody who hasn't spent a lifetime with Asperger's syndrome will not notice the significance of this paragraph:
In the heat of a social situation, it pays to be able to come up with a sensible interpretation of the causes of actions (MINDSTATES) quickly if one is to survive to socialize for another day. Non-mentalistic explanations are just not up to the job of MAKING SENSE of and PREDICTING BEHAVIOR rapidly. Instead, a person with mindblindness is left CONFUSED.Without mindstates, it is not possible to MAKE SENSE of anything. You live in a world of constant *CONFUSION* where nothing *MAKES SENSE* and nothing has ever *MADE SENSE*.
It is our MINDBLINDNESS and our constant CONFUSION what causes our total lack of common sense, and without any common sense whatsoever, we go through life making one blunder after another, especially when our RULES and EXPERIENCE are not good enough for the particular situation at hand.
IT DOESN'T CEASE TO AMAZE ME how VERY FEW parents of Asperger children seem to understand this. And understanding all of this is CRUCIAL for the next logical step: Teaching your son to use his logic to MAKE SENSE,
Confusion is mentioned even in the oldest document that I have about autism, it is a famous paper and you probably have seen it yourself: "Adult Recollections of a Formerly Autistic Child" by Jules R. Bemporad. Journal of Autism and Developmental Disorders. Vol 9, No. 2, 1979. Page 192:
According to Jerry, his childhood experience could be summarized as consisting of two predominant experiential states: confusion and terror.Jerry is autistic. At least we Aspergers are spared the terror and only have to deal with the confusion.
Can you imagine what it is like to spend a lifetime of confusion, not understanding anything about anything that has to do with people, and being unaware of your predicament?.
I spent 45 years of my life not understanding anything about anything that had to do with humans. It was not until I read the books about autism, and "Mindblindness" in particular, about three years ago, that I began to make some sense of the world.
The world of humans constantly presents you with small little puzzles. A normal person constantly takes these little pieces and puts them together. When that normal person reaches old age, he has thousands or even millions of solved little puzzles. I am finding now that all I have is millions of disconnected puzzle pieces that I never put together to make sense of anything.
Uta Frith calls these pieces 'fragmented knowledge'. In "Autism and Asperger's syndrome" page 4, she says:
Autistic people lack the drive to pull information together into overall meaning. They may learn many facts about the world, but their knowledge seems to remain curiously fragmented. They somehow fail to put their experience and knowledge together to derive useful meaning from these often unconnected pieces of information.The reason for failing to put things together to make sense of them is our mindblindness. Our inability to visualize the mindstates of others, to realize that they have a mind of their own, with their own wants, beliefs, feelings, and intentions that are patently different from our own.
Take the case of Steve, a local Asperger who sometimes calls me on the phone. I have been asking him questions, and sure enough, I eventually found something that I could use here as an example:
1) Steve knows that his mother made his breakfast.
2) Steve knows his mother washed his clothes.
3) Steve knows his mother put some money in his wallet.
But does Steve REALIZE why his mother did all this? When I pressed him, he gave me a non-mentalistic explanation: "I don't know, maybe because it is her duty to do all this for her children?"
Without MINDSTATES ("My mother does all this because she *LOVES* me") and without somebody who EXPLAINED the MINDSTATES to him ("My mother has EXPLAINED to me that she does all this because she *LOVES* me") and without him sitting down to use his logic to manually figure out her mother's MINDSTATES, which is what I do now that I know what is the cause of all my problems, Steve cannot pull these three pieces of information together (breakfast - clothes - money in the wallet) to derive useful meaning from them, ("My mother *LOVES* me") and the three pieces of information remain curiously fragmented in his mind.
Probably it is not even that we do not realize that other people have a mind of their own; it is that we are so profoundly disinterested in this kind of knowledge that we do not realize (until we read the books) that we seldom take into account other people's feelings, wants, beliefs, and intentions. All this is very difficult to understand, and it has taken me a long time and still I am not sure if I have managed to put the finger on the precise spot of problem. Try to imagine the absolute, abysmal, and abnormal disinterest that a brain damaged person in a vegetative state feels about the world. Then imagine that for some magical reason, the damage on the brain of that person is reduced until it affects only the part of the brain that takes care of dealing with other human minds. That will give you an idea of the absolute, abysmal, and abnormal disinterest that we feel for the other people's mindstates.
I have had e-mail correspondence with several parents of autistic children, and I have tried to explain to them all or some of this in several occasions. It completely mystified me why most of them:
1) Did not understand what I was talking about.
2) Or, did not realize the significance of what I was telling them,
3) Or, maybe even did not believe me.
It was not until Rosita, the mother of a cute six year old Asperger, wrote me
these two paragraphs that I really understood what was happening:
Maybe the parents of such kids see them as "normal" and don't bother
looking for more information or advice. Maybe they think that because the kid
is talking and going to school as any other kid, then they 'made it' or they
are 'cured', and they stop searching for answers.
As you know, there are many kinds and degrees of autism, so maybe
you were talking to the wrong parents, since I think that most of the things
we have discussed apply only to high functioning Aspergers.
hit the nail in the head twice! (1) Definitely, all this only applies to high
functioning Aspergers, and (2) this is probably even what my own father thought,
that since I was going to school with normal kids, I was on my way to lead a
normal life and he didn't have to bother himself any further. If that is what he
thought, then it was a MONSTROUS mistake!!!
Maybe the parents of such kids see them as "normal" and don't bother looking for more information or advice. Maybe they think that because the kid is talking and going to school as any other kid, then they 'made it' or they are 'cured', and they stop searching for answers.
I believe that there are three kinds of high functioning Aspergers.
1) Those who will never be able to lead a nearly normal life no matter what
their parents do.
2) Those who will go on to lead a nearly normal life IF they receive the RIGHT KIND of support from their parents.
3) Those who are so high functioning and so highly intelligent, that they are going to lead a nearly normal life not matter what their parents do, or fail to do.
I believe that I belong myself to group #2. I never received the RIGHT KIND of support from my father nor from anybody else.
If you believe your son may also belong to #2, then you might want to go through all the papers that I have put together here. They are based in my own experience, and also on what I have heard from other high functioning Asperger adults through the Internet. Some of them made it and are married and solidly employed and are leading nearly normal lives, most of them did not make it.
We believe that there is no such a thing as a single core deficiency in Asperger's syndrome. Mindblindness is the most devastating deficiency we have, but that doesn't mean that it is the only one. The whole part of the brain that specializes in dealing with humans seems to be compromised. This must involve far many more neurone modules or "coprocessors" that we are able to realize. I can easily notice that there are many things that are not functioning in my mind when I engage another person. To emulate a normal person, I would have to consciously keep track of many different things that NTs (Neurologically Typical, "normal" persons) do effortlessly and unconsciously, and I can't.
I sometimes can recognize the other person and force myself to become interested on what he is telling me. And I may keep coming out of my 'never land' of fantasies for periods long enough to keep a coherent picture of what is being said. But it is impossible for me to also keep track of mindstates, build a web of associations with the information that is coming in fragmented, use and interpret body language, and remember a myriad of facts about the other person, down to the fibs that have been said in the past. Even with my autistic singleminded stubbornness, I am unable to do it. The best I can do, is to try to pull everything together afterwards.
The idea behind all this is that the human brain can CONSCIOUSLY do only one thing at the time, but unconsciously it can do, and does in the case of a normal person, a surprisingly large number of things at the same time. When the brain modules or mechanisms that are in charge of unconsciously doing all those things do not function, it is not possible to compensate doing them all consciously at the same time. (One at a time, it can be done and I have done it). From this is that I get an idea about the very large amount of modules and mechanisms that must be compromised in Asperger's syndrome.
In our opinion, Asperger's syndrome includes the following deficiencies:
Very narrow interests.
Abnormal attention patterns.
Clumsiness. In some cases so slight as to go unnoticed.
Inability to do many mental tasks that NTs do effortlessly and unconsciously. Including:
Inability to mindread (Mindblindness).
Inability to play "the social game of chess."
Inability to read the "language of the eyes"
Social memory deficiencies.
For several of us including myself, AS came associated with the following.
(In ourselves and/or other members of our family):
Difficulty to recognize people by their face's skin shape and texture (prosopagnosia).
Difficulty in making words out of sounds (Central Auditory Processing Deficiency or C.A.P.D.)
An abnormally high intelligence that always comes paired with an emotional blindness to the emotions of others. (What I call the "Hannibal Lecter syndrome.") Can be perceived as a striking coolness, offensive selfishness, incapacity to feel compassion, sociopathy, or the person may describe himself as "a monster."
> You do not strike me as a monster.
> You should ask some of the people who know me.
Clearly, there are many other deficiencies that have not been noticed, are less common, or are hard to isolate or understand.
All our deficiencies must be related even when they don't seem to be. Why do we have abnormal attention patterns? Nobody knows what the brain needs to handle other human minds. Maybe it needs special attention patterns. Why do we have very narrow interests? When I started trying to compensate for my social incapacities, I found that everything that could possibly get in my way, was getting in my way. My profound lack of interest in other minds, my poverty of co-processors, my abnormal attention patterns, my social memory weaknesses. Then I realized that it makes sense to expect every part of the mechanism for handling other human minds to get in my way when I try to handle other human minds without that mechanism, and that everything that gets in my way must be part of that missing mechanism. Very narrow interests definitely antagonize social activities, so we must have very narrow interests because broad interests are needed for socializing.
It is almost impossible for me to pay attention when somebody is telling me something that does not interest me. In that case, I go away and think about things unrelated to what is being said. I am gone into a 'never land' inside my mind and I just come back regularly to check and see that everything is going well outside, that is, that I don't get caught in the act of not paying attention to what is being said. I do not do this on purpose. I cannot avoid doing it, and most of the times I do not even realize that I am doing it.
When I am alone I am gone all of the time. I might be ruminating things that happened before, or speculating about things that may happen in the future. For instance, I might be laying on my bed and I may think what I am going to write about when I get to the computer, and I might get some pretty good ideas, but it is useless, since by the time I get to the computer, I will have forgotten everything that I decided to write about. Lately, I have been taking a clipboard with me everywhere to write down my ideas. I also speculate a lot about what is going to happen in the future. I even talk with people in my mind, not only what I will say but also what they will reply. But of course, in real life it never turns out to be like I anticipated.
I also fantasize a lot. When I am alone, I will even make movements, if I am fighting with a sword in my imagination, I will move my arms, I will even talk, usually in a low voice, but sometimes I laugh and say what I am thinking in a loud voice, specially if there is nobody around to hear me. I have tried several times not to go away. I can prevent it only for a very short period of time. It is as hard as trying to stay with our minds blank, that is, without thinking about anything. You can do it, but you have to concentrate not to think, and as soon as you lower your guard, you are doing it again. I have tried to get hold of one of my fantasies and put it down on paper. It is not easy. Some of them are very hard to explain. Some are very fleeting and do not form a coherent story. Here is one that is coherent and I found easy to remember because it scared me:
My plane had just landed and was slowing down when somehow it veered to the left and left the runway. The terrain was very irregular and the landing gears collapsed. The belly of the jet hit the ground and the fuselage broke in two pieces, but it broke precisely in front of my seat, so at the same time that all lights went dead inside, it never was pitch dark for me because there were red and blue lights on the ground. I snapped my seat belt open and jumped out. It was very cold and the grass was wet with rain, and I felt the strong smell of jet fuel. Then there was a sudden whoosh and the body of the plane caught fire. As I ran, I could hear the screams of the people inside.These fantasies explain why some Asperger children prefer their own inner world to the real world.
> The people and situations there are more interesting to me
> that a lot of what's "outside."
I have always had trouble recognizing people. Beside my family, I am able to recognize only a few other persons, most of them because I have known them for years, others only because I have been in contact with them constantly.
I never realized how severe this problem was until I met a guy on the Internet who has difficulty recognizing even his own family. Together we discovered that what we cannot recognize is the skin's shape and texture on people's faces. We can tell people apart by the hair on their heads, eyebrows, beards and mustaches, by their voices, by their bodies, clothes, and even the way they move, but not by their face. The brain is a very specialized piece of machinery, and different parts of the brain take care of different tasks. It seems that there is an anatomically independent area of the brain that is responsible for recognizing faces, and that area is damaged or destroyed in the case of prosopagnosics. The condition is very rare in the normal population, being caused mostly by blows to the head, but among Asperger's syndrome sufferers it is very common.
Why Asperger's syndrome? We believe that in Asperger's syndrome, the area of the brain that is responsible for human relations is damaged or destroyed, and the area responsible for recognizing faces is within this larger area. Or at the very least, it was very close to it during the period of gestation when the insult that causes AS is likely to have happened.
How does prosopagnosia affect your life? In my case, on top of isolating me even more from people, it also gains me further hostility and rejection. Let me explain:
A normal person is usually able to recognize others in half a second or less. This means that he can look at others for a fraction of a second, recognize them as acquaintances or strangers, and then avert his eye gaze. Even when this normal person is 'sizing up' a female (a very normal human behavior), he probably can do it in a fraction of a second and then avert his eye gaze to avoid giving offense.
When a part of the brain is damaged, other part has to compensate doing a job that it was not designed to do. In our case, the mechanism that is normally used to 'size-up' a potential mate as "my type"/"not my type", becomes activated to try to recognize people for us. The problem is that this 'size-up' mechanism is a lousy alternative, and it takes us a long time, at least eight seconds, before we give up trying to recognize a stranger and decide that he probably is indeed, a stranger.
The problem is that females interpret my innocent eight seconds of staring as a disgusting, lewd, shameless 'sizing up'.
When I do "size up" a woman, the problem is much worse. I stare at her even longer because I am trying to use one single overloaded mechanism to do two jobs at the same time; tallying up her assets, and trying in vain to recognize her.
And if I happen to go to "never never land" while I am doing this, the mechanism "locks up" and I keep on staring at them for a very long time, until I come back.
The problem is particularly severe with the neighbors. Once a normal person knows his neighbors, he already knows what they look like and he only needs a fleeting glimpse when he meets them again. I don't recognize anybody and as a result everybody is a stranger for me, so every time I see any attractive female neighbor, I tally her up from scratch because for me she is a total stranger whom I have never seen before. If I see her four times in a week, I do it four times in a week. I am not sure I want to know what they think of me.
The price that I would have to pay to avoid this problem is too high. I would have to stop looking at people. I am totally isolated socially, and looking at my neighbors is the last contact I have with the world. I prefer the occasional hostility to such an alternative.
I explain all this because I have seen it mentioned in the Asperger literature that we adults have "a stare problem", so this situation seems to be common enough to have been noticed by the "experts" and if your son has prosopagnosia, he might find himself in a similar plight after he reaches puberty and his "size up" circuits become activated. I have no advice to give; I am needing advice myself, but at least you will know the reasons behind the problem.
Asperger's seems to me to be UNSURPASSED in being EXQUISITELY TUNED to unwittingly earn us endless loneliness, hostility and rejection.
I will paste below some of the comments made in our group after we found out about our prosopagnosia.
> Finding this was like finding the holy grail. I am
not imagining this.
> It is real. <tears, a little>
> Me, my problem is that people just don't look the
> remember them. Fortunately I recognise voices, or I would never
> be sure who I was talking to, even in the mirror.
> I was at a party this afternoon. I met and talked to
> Some of the people I have known for years, but some were new. I
> talked to all the new people, but already, just six hours later, I
> can say that if I met each of them on the street, I would only
> recognize the two that had beards. Two non-bearded ones gave me a
> ride home, and the ride was for an hour. Despite that, I would not
> recognize them now.
> I am 40 years old and have Asperger's Syndrome. I
also have trouble
> with faces. In fact, I've had that problem since early childhood. I
> also use clothes and hairstyles to identify people. If the person
> dyes their hair or gets a new haircut, he or she seems like somebody
> else until I hear the voice. When I'm at the skating rink I also
> identify people by their skating styles.
> My last boss: When somebody came by and I suspected
it was him, I looked
> at his shoes, which were of black leather, while most everybody else were
> wearing tennis. If his shoes were black leather, I would go on to his
> pants, which were the darkest blue of all pants worn in the shop. If
> his pants matched, then I would go on to his face, and if with my weak
> ability to recognize faces, I could tell that his face matched, then
> I assumed that it was him. Even then, I was careful not to put myself
> in a position I could not get out of without making a fool of myself,
> if I was mistaking somebody else for him.
They even seem to keep a record of jokes told to whom and to whom not. My dad used to repeat jokes many times. In my opinion, that was a sign that his human files on others were weak. Do you know of anybody who tends to repeat his jokes? It could be a signal that he has a weak social memory.
We could never hope to do simultaneously much anything of the above. We cannot even talk with another person in the real sense of the word. We barely manage to exchange literal information and with luck, do it in a way that seems superficially normal. What most of us are forced to do to compensate for this deficiency, is after an exchange, go over what was said, trying to figure out intentions, second meanings and so forth.
I call this problem "poverty of co-processors", in the sense that we have a very narrow bottleneck in the amount of information that we are able to process at one time.
There is a lot of variation in our group. Some people cannot talk and coordinate movements. Others cannot use eye gaze and talk at the same time. Others cannot process feelings. I do not like to talk when I am eating, because I do not feel the taste of the food if I am talking (or listening) to somebody at the same time.
The brain seems to have battalions of dedicated neurone modules each working in its own very specialized task. It is like thousands of small computers or 'co processors' that do a lot of work simultaneously that would overwhelm a single computer if it tried to do it all at the same time. The part of the brain that handles other humans must have many of these 'co-processors'. Take away this part of the brain, and the other parts of the brain that have to compensate for it, cannot keep up with all the work. The result is that we can pay attention to what the other person is saying, but we cannot pay attention to his intentions, second meanings, body language, etc. at the same time.
> As I understand it, NTs can have several topics
going on in
> their minds at once.
> Which is often due to your mind being 'swamped' with
the task of trying
> to do something that is 'essentially foreign'. I've studied this side
> of myself, and it's like 'CPU usage' suddenly jumps to 100%, and
> everything else bogs down
> He described it also like a computer with all
resources in use.
> There's no room for anything else.
> I can either walk or think about walking, not both at the same time.
> Now I know that it's simply that I have to *think*
in order to *feel*. Emotions
> remain undifferentiated and un-understood until I can process them cognitively.
> If I force "CPU cycles" onto such things as
flawlessly NT-like eye contact or
> social self-awareness, I cannot muster the concentration I need for the task at hand
> I think I am beginning to realize the profoundness of the compromise involved:
> it involves allocating a chunk of my "CPU power" to sit on my own shoulder and
> monitor what I am doing and how I am doing and whether I'm "meshing" socially
> and doing the right thing. And while this makes me more socially acceptable,
> it also makes me less effective to deal with the task at hand.
> I sit down *after* an exchange to figure out intentions, beliefs, etc.
> I definitely need to do this "off-line", after-the-fact, not in real-time.
THE DAY MY FATHER DIED, my younger sister Brenda told me crying that he had been the only person in her family who had ever really cared for her, and had been always kind to her. That now that he was gone, she didn't want anything to do with the rest of the rotten family that she had the miserable luck of having.
I was confused. I had gone through so much punishment the last years I spent at my dad's home, that I had come to believe that he was mean. Suddenly, I started remembering the endless number of times that he had been very kind with me. Even the last few years, he had been what appeared to me to be randomly mean one moment, and then kind the next. It just didn't MAKE SENSE!
Normally, I would have felt confused and that would have been the end of it. But now I had read several books about autism and I remembered that Uta Frith had written in her book in very large letters, that we autistics LACK THE NORMAL OVERRIDING URGE TO UNDERSTAND PEOPLE, TO MAKE SENSE!!! And I also knew that, according to her, what I had to do is to put fragmented bits and pieces together to make sense out of them. But no matter how hard I tried to fit pieces together, still I couldn't understand why my dad did the things he did. It still didn't MAKE SENSE.
I also had another problem that this time I could not give up trying to figure out. The hostility of just about everybody everywhere I went. For the first time in my life, I had realized that there is a reason for people to be hostile toward you. (Before, I used to chalk up most hostility as just another form of rejection for being "crazy"). What really hit me like a ton of bricks was not just the hostility itself, but the mystery of how on Earth could I have managed to give almost everybody in sight a reason to be hostile toward me without ever having myself the SLIGHTEST CLUE of doing it.
This and several other things led me to visualize the sheer magnitude of my problems and to realize that I had been totally clueless about them for all my life. Then I found Donna William's book "Nobody Nowhere" in the library and after I read it, it began to dawn on me that I had been living a nightmare of confusion for 45 years. That I didn't understand anything, and that I couldn't find a way to understand anything.
After several weeks of intense despair, I happened to read a line on the back of Uta Frith's book. I don't have the book at hand, but I remember that it said something like "autistics fail to realize that it is WANTS and BELIEFS what drive people's behavior. What other people do, for them, remains a bit of a mystery."
WANTS and BELIEFS? WANTS and BELIEFS? The notion seemed totally incongruous. As incongruous as you would find seeing the Queen on England breakdancing in front of the members of Parliament. But eventually, when something mystified me, I started asking myself, what does he WANT? What does he BELIEVE? And I was surprised beyond explaining by the results that started pouring in out of the blue. And then came even a bigger surprise. Other people's behavior began to make sense not sporadically but consistently for the first time in my life.
My dad was always adamant that I finish my career in college. What did he WANT? He wanted me to prepare me for the day he was gone! What did he BELIEVE? He obviously believed that I could earn my bread with a career in Electric Engineering! That he believed that I could successfully work for an electric company like PG&E gave me an insight how poorly he understood how bad my social deficiencies are, and that, and several other things, led me to eventually realize that he also had Asperger's syndrome himself, and like myself, he also had severe problems with common sense and grasping reality.
MY DAD, FOR THE FIRST TIME IN MY LIFE, WAS STARTING TO MAKE SENSE! It is until now after he passed away that I realize for the first time that he *loved* us. (Mindstate!), To have understood that only after he passed away, is a sorrow that I am going to carry for the rest of my life.
Soon I was pointing my newly discovered trick at everybody else, and sure enough, I started unearthing all kinds of things about everybody like how they feel about life, what things are important to them, how intelligent (or how dense) they are, their mental maturity (or incredible immaturity), their immediate goals and also their life goals. I discovered how amazing it is that every person is so different. Of course I also found many things that I just cannot figure out, and I am left with the suspicion that it is because there are missing pieces that I need and I do not have.
Her behavior was a total mystery, and not only to me but as far as I could see to everybody else, including my little nephew Enrique who told me one day: My aunt Margaret is crazy!
What does she WANT? What does she BELIEVE? What does she FEEL? What are her INTENTIONS?
Why would she be so concerned about this old woman and things that happened 30+ years ago? This old woman also caused me a lot of grief, and I seldom remember her. Why doesn't she forgive and forget? There is a mindstate for not forgiving and forgetting: it is rancor.
Why would she make so many expensive phone calls? I would make expensive phone calls myself if I didn't have to pay for them, and if I didn't feel any love for the person who is going to pay, and/or if I wanted to get back to the person who is going to pay. The mindstate rancor comes again to mind, and also the mindstate vengeful.
Why would she argue with everybody in sight? Why do you argue?
You argue when you want to convince the other person of something. You argue when you want to change the other person.
You argue with everybody in sight when you want to change everybody in sight.
Why does she read the Bible?
There are many reasons for reading the Bible, but in her case, I feel that she reads the Bible to escape reality. It would be wonderful if God really existed. I believe that she would like to change her lousy existence for a paradise in heaven.
Whatever I am getting out of all this certainly looks ugly:
Rancor, get back, rancor, vengeful, change everybody in sight, change her lousy existence...
All the pieces are falling together, and not a single one of them is left out because it doesn't fit. In this particular case I do not have to force myself to accept what I have in front of me as the truth, and I do not see the need to dig any further: My sister is soured.
If I can deduce so much poison out of a single paragraph, how much poison must she be carrying herself inside? And where did she get so much poison?
I believe that it comes in her genes, the proclivity to be so screwed up, and also, all the mental abuse that as a child she had to take from my mother must have contributed too.
Now I have made sense of her. Before, I would approach her, and I would be confused when I got very unkind responses to my approaches. Now I know how she feels about life and about herself and about others, and I can use her mindstates to ANTICIPATE her likely future behavior. Now I have THE FREEDOM to choose as a better strategy to steer away from her.
But for all her faults, she also has a virtue. She has this habit of explaining things that has been invaluable to me. For instance, she mentioned 'autism' when I was digging the books about schizophrenia trying in vain to find a description of myself in them. And she also told me that my dad was autistic. That I did not believe her has nothing to do with the fact that she told me.
What mystified me most about him is that he was always very kind with us, but his kindness was sometimes mixed with behavior that was totally out of place in a very kind person.
Let me give just one example: The case of my oldest sister, Olga.
Her own stupidity (she squandered her husband's life insurance money) and my dad's total lack of common sense condemned her to a life of a professional freeloader.
She had wanted to become an Engineer, but my dad had a rule that he probably had received from his own dad, that "women do not study; they get married," and so, instead of going to college, she found a boyfriend and got married. After her husband killed himself in a car accident and she lost every penny of the life insurance, she landed with five kids back at my dad's doorstep in need of financial support.
My mother was feeling lonesome all by herself up in the mountains were we lived, and my dad had a "brilliant" idea that killed two birds with the same stone: he bought her a house beside ours, and gave it to her with the condition that she keep my mother company.
If driving her into a life of dependency wasn't bad enough, his profound, obsessive hatred toward rich-dad children did the rest. I never saw her negotiating with him for money, but I can imagine now how degrading it must have been.
I am absolutely convinced that my dad was not a bad person. I am willing to put my head on the block and have it cut off if I am mistaken.
Why did he do this to her? She may be lazy and not very bright, but she was his daughter.
I know now why he did it. He did it because he never had a clue. It never crossed his mind or he never had a single thought or any awareness of any kind about how she might *feel*. In his train of thoughts, all that reached his consciousness was his own concerns and feelings. And I know what those concerns and feelings were because he repeated them out loud many times:
"I had already had finished my duty with her and now, I have to keep her and
"I feel like an overloaded donkey."
Is it possible to blame my dad for being *blind* and not realizing that he had a very serious problem? That no awareness of how others *felt* about the things he did ever reached his consciousness?
He also did similar (or much worse) things to me and his other children.
And this is what I have not been able to accept: That it would have been so ridiculously easy to avoid so much suffering if we had known exactly what to do, and yet, we didn't know.
In the case of my sister, all she had to do was ask him to put himself in her shoes and try to visualize how she *felt* in the situation she was, and how she would *feel* if she had her diploma. It probably would have taken her many times asking him again and again until he "got it", but eventually he would have caught on, and the problem would have been solved. I put my neck on the line that he would have sent her to the university to study her carreer so she could become financially independent.
Words fail me. How can I explain how absolutely certain I am of this? It is just not possible that I am mistaken. Before, my dad's behavior made absolutely no sense, and now, after I realized that he also was blind, all the pieces fit together perfectly and there is not a single piece that is left out because it doesn't fit. The more I dig, the more everything fits together, and I have been forced to accept what I have in front of me as the truth, even if it is hell hard to believe or even visualize:
Even in the most extreme situations, there is no guarantee that an *untreated* Asperger is going to realize that the other person has a mind of his own, with his own wants, beliefs, and his own *feelings* that are patently different from his own.
Our blindness is the reason why most of us encounter so much rejection and hostility and usually end up as totally isolated outcasts. We step on everybody's toes without having a clue that we are doing it. And how could we avoid doing it, if we don't have a clue that we are doing it? They call it a "total lack of common sense", but it not a total lack of common sense, it's being abysmally, 100% mindblind.
FAAAS - Families of Adults Afflicted with Asperger's Syndrome.http://www.faaas.org/
Those afflicted with Asperger's syndrome have difficulty understanding what those around them think and feel. This manifests itself as a notable lack of 'common sense'. They often behave inappropriately in social situations, or do things that may appear to be unkind or callous.
It is the spouses and the siblings and the children of those afflicted with Asperger's Syndrome whom we are trying to reach. Especially those whose relative has not been correctly diagnosed with Asperger's Syndrome until well into their adulthood.
Is anyone listening...? We, the families with our blistered hearts and souls and damaged psyche, are the end-product of undiagnosed and untreated Asperger's Syndrome. How many families are suffering out there? You and your feelings are not recognized by the afflicted person.
And yet many times it happens that I can visualize effortlessly the other person's mindstates, even when there are no patently visible outward signs like somebody laughing in your face. Even when there are no signs at all. Why? I am not sure. It probably has nothing to do with mindreading but with experience.
Experience makes me realize that when somebody sees me yawning he may *believe* that I am sleepy or bored. Experience makes me know that when somebody strikes his finger with a hammer, he *feels* pain. And that if somebody breaks into my house at night, his *intentions* are to plunder.
The unavoidable outcome of all this unconscious learning we call experience is that the older the *untreated* Asperger person grows, the more his devastating deficiency hides itself, until he becomes a... "relatively well adapted Asperger individual whose behaviour is superficially normal, and whose appearance and demeanour do not elicit the help he or she needs".(*)
(*)This line was taken from Uta Frith's "Autism and Asperger syndrome" (p. 25). It amazes me how well she understands us. Very few people do.
And *untreated* doesn't mean that we need to go to a shrink for endless sessions of "therapy" at $225 an hour. All an Asperger needs to avoid so much misery is to understand what is the cause of all his problems and to learn to intelectually compensate for his deficiency. It is that ridiculously easy.
My experience has been that when all the pieces fall together, sometimes I just cannot believe the answers that I get, and then I have to dig more and more trying to find something to prove them wrong, and the more I dig, the more everything fits together, until I am forced to accept what I have in front of me as the truth.
For instance, that is how I eventually was forced to accept that my dad also had Asperger's syndrome.
1) Every human behavior has a reason behind it, even if I don't see it.
2) I will not give up my unrelenting autistic singlemindedness until I find it, or until I am satisfied that I do not have enough information to find it.
3) When I find the reason, all the pieces will fall into place, and not a single one will be left that doesn't fit.
4) After I find it, I will dig further to try to disprove it.
5) If I find a single piece that doesn't fit, then I still have a problem. Go back to step two with the problem.
6) I will force myself to accept what I have in front of me as the truth, even if I find it hard to believe.
I also have several rules of thumb that have been of invaluable assistance:
1) People usually talk about the things they *want*, and openly say
what they *believe*.
2) When somebody's behavior flies in the face of logic, concentrate on his *feelings*.
3) A woman in love usually *reasons* with her buttocks.
Rule #3 might seem a bit strange, but it helped me to understand the behavior of one of my sisters who fell in love with her shrink.
To my rules of thumb, Rosita added a rule of her own:
5) Some people are so screwed up that it is just not possible to figure them out. Know when to give up.
Two of my sisters seem to fit this category.
I believe that any reasonably intelligent Asperger is capable of making sense at any age, provided that he feels the intense need to do so. Parents' strategy should be directed toward getting their son obsessed with the need to make sense. To make him understand that the mysteries of human behavior dissolve when one finds the appropriate mindstates behind them. To make him see that once he has the mindstates, he is going to be able to use them to predict people's likely future behavior. And believe me, It feels good when they do precisely what you predicted they were going to do.
Motivation is essential for us to want to learn. How do you get an Asperger with very narrow interests motivated to find mindstates, appears to be the $64,000.00 question. I tried with my local Asperger friend, and I never could get the message through, and I was using the most powerful lever on earth: His misery of not being able to find a girlfriend. I told him many times: A girl will go away if you do not figure out how to please her, what does she want, what does she like. How many times have you met girls? ("Many times"). Have you noticed that they are friendly at first and then they reject you? Do you know why? ("I don't have a clue"). One of our deficiencies is that we do not feel any curiosity to find why people behave the way they do. You have to realize that there is a reason for girls to reject you and go away! If you find the reason, you are going to be on your way to finding how to make it work the next time. Believe me that I would literally give an arm or a leg to have had somebody explain this to me when I was young. etc. I could never arouse his interest! He believes that I could get him a girlfriend if I wanted, and that I do not do it only because I do not want to. ("So you are not going to help me. Right?") It doesn't even cross his mind to consider how am I supposed to go about finding a girl who will want to go out with him. He is totally disconnected from reality, and unfortunately, since I am not a member of his family, I am not in a position to push him around without mercy until he sees the light.
Now I realize that I have gone through most of my life like a blind man who never learned to use a cane to avoid hurting himself with every obstacle on his way, and who never even suspected that he was blind in the first place. I get depressed when I start remembering all the misery and I realize how ridiculously easy it would have been to prevent it.
All they ever needed to do is to explain things to me.
But who could have explained these things to me? My dad couldn't do it. He sorely needed explaining himself. And he married into a family of schizophrenics. My mother is the typical "refrigerator mom" described in the old books of schizophrenia. I do not blame her for having been born with all the wrong genes and not having the brain chemicals that drive normal mothers to care and protect their children(*), neither I blame my dad for marrying her because he probably was not in a position to be picky, but her disinterest toward us has been devastating for all her children, and for me, I am totally convinced that she made the difference between success and failure; between having somebody who gave me rules and helped me and protected me, and having nobody even in those moments when one single word would have made all the difference.
(*) On the other hand, she is very capable of feeling compassion for her children. This balances her imperviousness a little, and it also confused me to no end: Why she usually couldn't care less, and why sometimes she would even cry over us? For 45 years, I didn't have a clue.
I am paying the price of having been born in a madhouse. Bad luck, on top of bad luck, on top of bad luck, on top of bad luck. Or to be more accurate, an original stroke of very rotten luck that by the second generation has mushroomed far beyond the usual range of injustices that you normally expect from life.
I have accepted my fate now. Bill Choisser's messages through the Internet have helped me a lot. (Bill is the most intelligent of all of our Asperger super-geniuses). Life is like a game of poker, he says. When you are born, you pick your cards from the deck, and those cards stay with you for the rest of your life. Some people get a bunch of Aces, some get a bunch of deuces. Most of us Aspergers got a bunch of deuces but some of us also got an Ace or two. His Ace is his stratospheric intelligence. Mine was perhaps my dad's privileged economic position.
Some people do not believe in fate. They say that we are intelligent creatures and we can derail fate using our reason. I believe they are being nearsighted. Your level of intelligence is part of your fate, and thus, your ability to change it is only an illusion.
When you look at life from Bill's perspective, then life is not unfair but precisely the opposite: You receive from life exactly what you deserve. Or what your cards deserve. And you get it with a mathematical precision that probably only those of us who have studied advanced statistics are able to visualize.
We come to life abducted by our genes to do they dirty work of survival. As
soon as they get replicated, they don't care if we die or the price that we have
to pay to do their dirty work. Instead of all the worthless crap they force you
to read at school, stuff like "Romeo and Juliet", they should ask every student
to read Richard Dawkins' books, which give such a sobering perspective on life:
"The total amount of suffering per year in the natural world is beyond all
decent contemplation. During the minute that it takes me to compose this
sentence, thousands of animals are being eaten alive, many others are running
for their lives, whimpering with fear, others are being slowly devoured from
within by rasping parasites, thousands of all kinds are dying of starvation,
thirst and disease. It must be so. If there is ever a time of plenty,
this very fact will automatically lead to an increase in population until the
natural state of starvation and misery is restored."
"In a universe of electrons and selfish genes, blind physical forces and
genetic replication, some people are going to get hurt, other people are going
to get lucky, and you won't find any rhyme or reason in it, nor any justice.
The universe that we observe has precisely the properties we should expect, if
there is at bottom, no design, no purpose, no evil and no good. Nothing but
"Life based on genes is not a recipe for happiness."
"The total amount of suffering per year in the natural world is beyond all decent contemplation. During the minute that it takes me to compose this sentence, thousands of animals are being eaten alive, many others are running for their lives, whimpering with fear, others are being slowly devoured from within by rasping parasites, thousands of all kinds are dying of starvation, thirst and disease. It must be so. If there is ever a time of plenty, this very fact will automatically lead to an increase in population until the natural state of starvation and misery is restored."
"In a universe of electrons and selfish genes, blind physical forces and genetic replication, some people are going to get hurt, other people are going to get lucky, and you won't find any rhyme or reason in it, nor any justice. The universe that we observe has precisely the properties we should expect, if there is at bottom, no design, no purpose, no evil and no good. Nothing but pitiless indifference."
(Lines taken from "God's Utility Function." Richard Dawkins. Scientific American, November 1995.)
By the way, if you want to have an idea of how our present "time of plenty" is probably going to end, read Theodore Kaczynski's particularly brilliant "Unabomber's Manifesto".
The poor bastard is spending 23 hours a day in solitary confinement, and the other hour, they gave him company that he probably isn't too enthusiastic to associate with. I wrote him several letters explaining why he could never make friends or find a girlfriend, and about the shrinks' typical ineptitude to diagnose autism as schizophrenia. I wonder if he ever got my letters. He never replied.
Anyway, I have accepted my fate now. What I will never be able to accept, is that it would have been so ridiculously easy to prevent so much misery.
If I spent 45 years in a world of senselessness, I do not see how I could not happen to others. There must be thousands of people who are living in a world where nothing makes sense and they do not understand anything about anything, and they do not realize the nightmarish state they are in, because things have been always that way since the day they were born.
Was there any way I could find out? Every time I want to find out something, what I do is go to the library or surf the Net for it. Obviously, in this case the only tool I had was the Net. There is the World Wide Web, and there is the Usenet. The most reasonable choice was to search the Usenet. After several hours of searching for 'loneliness', which is the giveaway word for autism, and finding lots of messages from people who are lonely, but having no way to tell if they have Asperger's, I decided to post a message myself, and I decided not just to post it to the loneliness groups but to spam the computer newsgroups with it to get better results. This is the message that I posted:
2) Were you teased and tormented by other kids at school? Don't you
get angry when you remember?
3) Were you never able to get a girlfriend? Were you never out on a
date? If you are married or in a relationship, it started a bit late
in life (age 25-30) and it happened almost "by accident"? No long
friendship and no romance?
4) Are you very good at computers or engineering, but poor at social
relations? Aren't you unable to handle small talk? Are you by any
chance a computer scientist or a software engineer? (Many of us are,
or would like to be.)
5) Do you have few and narrow interests or hobbies, and sometimes
become obsessed with them? Do you like to collect things or keep your
possessions clearly categorized and listed? Are routines very
important for you? Or do you keep things in a total mess? Is it a
nuisance for you to have to dress in a socially acceptable way? Don't
you feel that you are a bit clumsy?
6) Are you a loner? An outcast? Where you sometimes called
"eccentric", "strange", "weird", or even "nut" or "crazy"? (They
probably still call you but not to your face now.)
7) Are you absent minded? Do you have a tendency to fantasize and
speculate? Do you spend a lot of time in inner retrospection?
8) Haven't you noticed that you do not look at the eyes of the other
person when talking to him/her?
9) Haven't you noticed that you are usually *clueless* as to why
people act the way they do? (Mindblindness).
10) Do you have difficulty recognizing people's faces? (Prosopagnosia)
Do you have difficulty understanding what people say? (CAPD). Do you
have an abnormally high intelligence? Are you incapable of feeling
compassion? *OR* Do you have a photographic or excellent visual
memory? Can you do complex math in your head? Can you visualize
complex structures and their relationships in your mind?
If most of the questions above apply to you, you are likely to have Asperger's Syndrome, a disability that can be devastating, specially to those who do not know what is wrong with themselves, and do not know what to do about it.
Please e-mail me for advise/support. I am not trying to 'sell' you anything. I have Asperger's syndrome myself and spent 45 years of my life without knowing what was wrong with me. I am now helping others with these messages.
P.S. Please note that the most important symptom of Asperger's syndrome is the total incapacity to make and sustain friends in the normal intimate and affectionate way. For us, the closest thing we can have to a friend is somebody with whom we tried to become intimate and affectionate and failed, but with whom we can still remain friendly and exchange hellos or phone calls. *OR* In the best of cases, somebody with whom we share a common interest (usually computers), and with whom we can pursue this interest in a parallel sort of way. *If you are able to make friends in the normal intimate and affectionate way, then you do not have Asperger's syndrome.* If you didn't have any friends as a child but now you have them, then you might have hyperlexia. Use Altavista to look up hyperlexia.
This post was like it was taken from the deepest bowels of my brain. I believe that I have this deficiency. Please e-mail me with some help/support.
Your description above seems to apply fairly exactly to me. Please send me any information you have.
I understand you have information about Asperger's Syndrome. Could you possibly e-mail me what ever you have. My son seems to meet many of the criteria listed and I would like to find out more.
What is this message doing in rec.walking? Please stop posting in irrelevant newsgroups.
I've just seen your posting on comp.arch. My initial feelings were that it was inappropriate for the newsgroup, but then I read it, and practically everything you pointed out struck a chord with me, so I went to AltaVista and did a little digging around, finding some rather excellent information at http://www.udel.edu/bkirby/asperger Reading some of the stuff there was uncanny, especially some of the stories about people's childhood and school experiences. What I've read so far has made me want to go out and do some more research on this, and perhaps see if my Doctor can put me in touch with a specialist in this area. Basically, I'm sending this message to say thank you, because you may well have just done me a huge favour. Again, many thanks.
hey, you described me pretty good.
Gee, I seem to exhibit MOST of the above symptoms...and the IQ tests and SAT scores at my high school say I'm gifted. But then, maybe THAT'S a disorder, too? I guess I've got a good excuse now for why I can perform complicated mathematical functions in my head, memorize long essays or poems in a matter of a couple of minutes and learn a foreign language in no time flat! In my life, the only *devastating disabilities* that have manifested themselves so far have been in OTHER people who don't know what's *wrong* with me, and don't know what to do about it. So now we *eccentrics* finally have a clinical name for our *strange* behavior. Call me *crazy*, but I'd rather be called a *nut* any old day of the year. Pretty *weird*, huh?
P.S. I can't say that I'm lonely although I gotta say, I'm definitely a loner, so please send me what you have... cuz now I'm kinda worried. I was always under the mistaken impression that it was everyone else with the deficiencies.
Yep, I've got it. 9 out of 10 yes. Are there treatments?
Please keep this stuff (I hesitate to call it junk, but it comes close) out of comp.terminals. It isn't what the group is for.
I almost completely fit in this description. I'm a 26 year old male living in the Netherlands. This is the first time I hear that 'it' has a name. If you have any more information, please let me know.
Sounds like you have been living my life. My name is ------ ------, nickname is "----------." Answered most of the questions with "yes", not all. I never heard of this disease that you speak of. If this is a joke it isn't funny. There are some of us that life is anything but a joke even though our lives may seem like it. If you are serious, I would like to hear more.
How do you dare putting such out-of-subject crp in our newsgroup?
You may be unsurprised to learn that before replying to this I did a brief web-search on Altavista and comparing what I found:
a) Asperger's Syndrome is a recognised clinical disorder.OK, you probably realise now that I was *dead* suspicious about your post, but now believe that you are likely to be telling the truth.
b) Your questions seem to cover most of the points that most of the clinical diagnostic pages I found cover.
c) I never knew there was a medical term for being what most people call 'geek' :-)
d) I answered yes to all 10 of your questions...
Have *you* never been able to make and sustain friends? Perhaps it's because you feel you needn't follow social conventions. If you don't understand the rules of Usenet, please don't post to newsgroups.
Actually you *could* have written my personal description. So where do I go from here...at 62 probably too old to change!
Hmmmm. This is fascinating and sounds too much like me for comfort? What can you tell me? What is known about it? How common? Other symptoms? Causes?
Is this for real ? If so, more info gratefully received.
Will you kindly take your quack psychoanalysis, your novice Neuro Linguistic Programming techniques and your painfully inadequate hypnotherapeutic attempts and ram them where the 'sun don't shine'?
This newsgroup is called comp.unix.advocacy and none of those three words appear to apply to you.
Well you have my attention...What advice do you offer?..
Why are you posting this to comp.periphs.scanner?
I never knew about this, please tell me what it's all about. I'm a student at uni in UK, doing Computer Engineering. Most of this describes me!
Please enlighten me a little, as your 10 selective points are fairly representative of my lifestyle!
Spamming to irrelevant Newsgroups will get you lots of email, but I don't think it'll help you gain friends to reduce your loneliness. Perhaps another symptom, as well those listed, is antisocial behaviour online?
I'd be interested in knowing more. I certainly have most of the 'symptoms' you describe though I've always assumed it was something to do with my personality and I should just accept it. So yes, if it is a 'syndrome', I'd be very interested in being more 'normal'.
Put it this way: If this was a joke it amused me. If it wasn't, hell, it amused me anyway... Think yourself lucky you didn't get my usual response to this sort of junk. It doesn't belong in comp.sys.sgi.graphics. And I'll lay odds you spammed it to countless other groups too. The least you could do is learn to cross-post properly... Whatever it is you're not selling, I'm not buying.
I was stunned to read your usenet posting - it's a description of me. Please e-mail me with any information that might help.
Do you have *any* idea what comp.protocols.appletalk is for?
Most of the symptoms you indicate seem quite common within MENSA (the high IQ society), so I always assumed it was a natural byproduct of having a high IQ.
A blind child needs two things in order not to trip with every obstacle on his way:
1) Somebody to teach him how to find his way by himself.
2) Somebody to guide him while he learns to find his own way.
Your mentally blind son DESPERATELY needs your support. The RIGHT KIND of support. He needs you to:
1) Teach him to MAKE SENSE by himself.
2) Constantly EXPLAIN mindstates to him until the day he learns to figure them out on his own.
There are schools for blind people, but unfortunately, there are no schools for mentally blind people. This is something that you will have to do yourself, and for many years.
Do you see the word confused not once but twice? I was also confused when I first read this, but now I have made sense, and WHEN I FEEL CONFUSED, I IMMEDIATELY KNOW WHAT TO DO!!! I ask myself:
What does she WANT? (Sarah, in this case). What does she
What does she KNOW or BELIEVE? What are her INTENTIONS?
If I didn't ask myself those questions, Sarah's behavior would remain a mystery for me also. (I spent 45 years of my life living in a constant mystery). But now, I have learned the hard way what I have to do, and I come up with this explanation:
Sarah is an alcoholic. What do alcoholics NEED? They NEED booze. Booze, in the large amounts that an alcoholic consumes, costs a lot of money, more that she can probably afford herself. So she needs to find somebody who will pay for her vice, and she found Arthur. Usually, a man who pays for a woman's liquor, will WANT something in return. If he doesn't get it, he will stop paying. But she KNOWS that Arthur is naive and desperately lonely, and she KNOWS that she can get away without bothering even to show him some affection. She found the perfect sucker.
Notice that a life of experience also helps: I already knew by experience, for instance, that a man pays for a woman's liquor to get something in return. Probably somebody told me that many years ago, and when he told me, I "got it" without needing to visualize mindstates myself. What I mean is that you do not have to figure those things by yourself, but heard a comment about it, or whatever. It is like knowing that when a somebody knocks on the door, he WANTS something.
I EXPLAINED Sarah's INTENTIONS to Arthur many times ("All she WANTS is your money!"), and he didn't get it. He didn't get it, because he is profoundly, abysmally, and abnormally disinterested in the mindstates of others.
If he was my son, I would repeat and repeat the same explanation to him over and over, until he gets it. It will take patience to get your son to make sense.
MINDBLINDNESS -> CONFUSION
EXPLAINING -> MAKING SENSE
Lifetime of MINDBLINDNESS -> Lifetime of CONFUSION and living in a zombie-like world where nothing MAKES SENSE and nothing has ever made sense, and where you don't even realize what is your problem, or that you have a very serious problem in the first place.
Constant EXPLAINING and teaching to figure out the mindstates of others -> Learning to compensate for your most devastating deficiency and learning to M-A-K-E S-E-N-S-E !
In talking to Jerry and his parents ... one senses that Jerry could have used a supportive mentor who could have helped him to make sense of the world around him ... concrete, educative therapy could have helped Jerry to arrive at an intellectual understanding of his deficits and thus deal with them in a more constructive and personally satisfying manner.
Do you realize how *BRILLIANT* this guy was? 40 Years ago, before nobody understood a thing about autism, he was able to summarize IN ONE SINGLE PARAGRAPH what one day will surely become the standard approach to Asperger patients: To make them understand what is the cause of all their problems so they can learn to intellectually compensate for their deficiencies. Even today, this is not being done yet because very few people in the world understand the problem.
Now, this is a true rarity, this shrink. Don't get the notion that it is a good idea to start spending your money on head shrinkers. The typical shrink is so inept that he will probably misdiagnose your son as schizophrenic and will start pumping anti-psychotic drugs into him. The shrink that saw me 30+ years ago, all he was interested in was:
1) Bleeding my dad white giving me endless sessions of "curative therapy" at $100 a pop.
2) Distorting everything I told him, and inventing "emergencies" with it, so my dad believed that he was discovering "important" information. The damage that he did with this is beyond words.
3) Seducing his female patients.
4) Amusing himself fooling people.
He once told me laughing that he couldn't believe how dumb people were. That they believed almost anything he told them because he was the "doctor" and he was supposed to "know." He even told me that the first thing he did when a new woman came in for therapy was to decide if he would try to f--- her or not. And yet, I only felt confused when he told me all this. I never realized his mindstates of mockery, disdain for all his patients, and curiosity to see how far he could get away telling me the bare truth in my face without me reacting in any way.
My younger sister Brenda went to see him a couple of times, and I heard her say once that she had ran for her life from him. That if she had gone to one more session, he would have concocted some way to take advantage of her.
My older sister Margaret (not her real name) spent years going to him for "therapy." She even told me once that she had fallen in love with him.
She actually explained her mindstate to me and even then I didn't "get it"!!!
And would you believe that I spent 30+ years with all this pieces of information fragmented in my mind, and it is not until now that I put them together to derive useful meaning from them?
And yet, when I try now to put all the pieces together to come to the sensible conclusion, there is one piece that doesn't quite fit.
Put yourself in the shoes of a married woman who's doing some hanky-panky with her shrink. Would you go telling your young autistic brother who can't keep anything to himself that you are in love with him?
After much thought, I have come up with three scenarios that have no loose pieces:
1) The shrink didn't go for married women, not because he had any decency but because had to be careful. There was always the possibility of a scandal that could ruin the good thing he had going. He had younger and easier prey. Also, he was in his sixties and probably didn't have many shots left to fire and he spared them for his younger, prettier prey. My sister fell in love with him but he kept his distance. This fits neatly with what he told me: "When a new woman comes in the first thing I decide is if I will try to [seduce] her."
2) Deceit. He could have instructed her to be candid, knowing that this would throw people off the truth. If this is what he did, it is surely working. If she hadn't told me she fell in love with him, nothing would convince me now that she didn't have an affair with him.
3) She blurted out about being in love with the cookies, before she found herself messing with the cookie jar.
Which (if any) of these scenarios is the truth?
The second one is far too risky to believe, the third one just doesn't ring true.
And so, since there is no dirty linen to hide after all, I can use the story to let readers see the kind of things they can expect from a shrink.
On Mon, 29 Jul 1996, etzel@ETZEL-HOME-PC.MV.COM wrote:
>> I have been seeking his help for so long now! I
pray and ask for his help.
>> How come I don't find answers and others do?
> For the most part, I find that pain is the difference between what we believe to
> be "right" and reality. I was an army brat, and grew up in a very military
> household, and understand chain of command very well.
> It does not work with my son at all. He loves the show he gets when I explode
> into a blind rage, "Kicking A** and taking names." He likes it better than X
> I grew up in an atmosphere where insubordination is unacceptable. It is
> I have had to learn an entirely new way of relating to Brian.
> He is pretty much non verbal, but to get cooperation, I have to explain things
> to him. Once he "gets it", the problem goes away.
> He will work with me but not for me.
> The answer was there all along, it just took me 13 years to understand it.
He was going overseas the next day, and I wanted to stay with him for at least another day, and I began dragging my feet. I cannot remember what it was that I did. Maybe he told me to call the travel agency and I didn't. The thing is that when he noticed that I was dragging my feet, he got very angry.
Luckily, by pure chance, I did something that I wish now I had done all the time with him. I explained to him that I was dragging my feet only because I WANTED to spend one more day with him.
When he heard this, he melted, and even though he was desperate because he already had been in Miami for more than a month, and he was worried because he didn't know if they were feeding his birds and watering his orchids, he stayed one more day with me.
I realize now that most of the problems I ever had with him, were caused by him being consistently clueless about the effects that his actions had on me, and by my failure to understand that most of the problems would have gone away if I had explained to him how I felt about the things he did.
He was basically a kind person, but the kindest person will step on your toes if he is blind and has no way of seeing that your feelings are on the way.
Explain that it is his responsibility in life to avoid pain and to try to achieve comfort. But realize yourself that he probably doesn't even know that he has needs. You have to explain to him his needs, and that if he doesn't fulfill these needs he is going to feel bad. You have to explain to him that he has to understand what he wants from life. Knowledge is like a pyramid. You will never understand algebra if you do not learn to add and multiply first. It is only until he understands what he wants himself that he is going to have a base for understanding that others also have their own wants, and that peoples' wants is what makes them behave the way they do. If you explain something over and over and over again, and he never 'gets it', the reason could be that there is some much more basic knowledge that he doesn't have and that is what is getting in the way.
For instance, my dad asked many times what was I going to do when I grew up. I didn't know and I couldn't answer. I didn't know because I felt that there was something very wrong with myself that was not going to let me work when I grew up. Why? Because that's what strangers led me to believe calling me "crazy!" If he had explained to me my autism, and that I could do it BECAUSE OTHERS HAVE DONE IT and they could work, and some were very successful, then, I could have made an informed choice and would have answered him with confidence when he asked me what I was going to do when I grew up.
Understand that knowledge doesn't hurt us. It is the lack of knowledge that is devastating.
Understand that the Asperger that dedicates himself to meaningless narrow interests, does so, only because he doesn't understand that there are more important things for him to be doing.
Protect him from the cruelty of strangers. You can take for granted that some people are not going to pass up on the opportunity to unload on him all the poison that they are carrying inside. You should explain to him that this is going to happen, and that he should not feel ashamed to go to you for support.
Protect him also from the corrosive influence of strangers. He is going to find people that will try to lead him to believe that he is worthless and should be put away forever, and that for him to try to get ahead in life is the most stupid idea on earth. Even one of my teachers did that to me. It is your duty to explain to him that these sad creatures exist in the world, and to make him understand how much weight he should give to their corrosive comments and WHY: BECAUSE OTHER ASPERGERS HAVE MADE IT AND HE CAN MAKE IT TOO!
Protect him from the cruelty of other students. They are going to tease him and torment him without mercy, and the school staff is not going to be terribly interested in stopping them. It is up to you to see that they leave him alone. Keep in mind that P.E. is the worst of the worst for us in highschool. Keep an eye open for this to see in what way you can help him cope. A medical dispensation would be a godsend here.
Explain before punishing him. I cannot remember a single time that I was punished where explaining would not have worked much better. If you punish a child for doing A, all that he is going to learn is that if he does A again, he is going to be punished again. He will not understand why he should not do A in the first place.
The things that we have are not important for us. I could never understand that money was valuable until I found how difficult it is to get it. But I knew how valuable was love, since I grew up in a home where it was scarce. Explain to your child the value of the things that he has.
Your son DESPERATELY needs you to explain the world to him IN TERMS OF MINDSTATES.
Let me give an example:
Johnny likes to drop the dishes on the floor and hear them break.
If you punish Johnny for breaking the dishes, all he will learn is that if he breaks another dish, he is going to be punished again. What he is not going to know is real reason why he shouldn't do it.
If you explain to him that he shouldn't break the dishes because they cost money, all he will learn is a superficial explanation that is going to hide to everybody including himself, the fact that he doesn't know the real reason why he shouldn't do it.
He will stop breaking your dishes. He will understand that breaking the dishes is something that he must not do.
But maybe you will notice, if you are very perceptive, that he has difficulty in generalizing. In applying the concept to other similar situations, and that he might, for instance, leave all the lights on the house turned on until you also explain to him that he shouldn't do that either because "electricity also costs money." Or maybe you will notice in other subtle ways that even though he behaves well, something is still not quite right.
Why? BECAUSE HE IS GETTING SUPERFICIAL EXPLANATIONS ONLY! If you explain to him that to get money you have to work, and that working is something that nobody *likes* (Mindstate!) to do, that in fact is something so *horrible* (Mindstate!) that they have to pay you to *persuade* (Mindstate!) you to do it, and that money is always in short supply, and that you can never buy all the things that you would *like* (Mindstate!) to have, and that we have to *mind* (Mindstate!) wisely the money that we have so we can get as many of the nice things we would *like* (Mindstate!) to have, then, you are going to see the difference!
Most important of all, explain to him what is the cause of all his problems: That he has a very serious deficiency. That in other people, little lightbulbs light up constantly making them effortlessly realize other people's *mindstates*. Explain to him that he doesn't have that ability, but that he can learn to intelectually compensate for his deficiency.
There should be full time schools for this, like there are schools for teaching Braille.
Understand that it is not that we are dense. It is that WE ARE BLIND. We are able to understand all the physical things that a normal person understands, and sometimes we understand them even much better because hereditary Asperger usually comes with an abnormally high intelligence. What we are hopelessly incapable of understanding (until we learn how to do it consciously) are the things that are based on mindstates.
YOU HAVE TO EXPLAIN THE WORLD TO YOUR SON IN TERMS OF MINDSTATES. Otherwise, what you will be doing, is just giving him rules that will only hide his problems even deeper, and all that will remain at the surface will be a strange lack of common sense, and occasionally, the blunders that he will do that everybody will find so impossible to comprehend.
I sympathize with parents that are overwhelmed with so many problems that they do not want to think about what is going to happen to their son after they pass, but that is precisely what they should be doing; preparing im for the day when they are not going to be present to help him along. He has to understand that he will have to fend for himself after they are gone, because nobody else is going to care; that it is his responsibility to prevent an outcome of loneliness, sexual deprivation, boredom, unemployment and poverty.
In his book 'The Art of Love', the Roman poet, Ovid, wrote this BRUTAL curse for the woman who did not let him see his beloved:
May the gods deny you the warmth of a home in your wretched old age,Let's not mince words: that is also the curse of the Asperger who does not take steps to avoid it.
and condemn you to an unquenchable thirst, and a winter without end.
1) Conquering his mindblindness (Making sense).
2) Overcoming his loneliness (Getting married and making friends).
3) Achieving financial security (College degree, solid employment, money in the bank).
Of course, making sense not only will allow him to conquer his most devastating deficiency, but will help him immensely to achieve the other two mayor goals.
There is absolute consensus among us adults that when it comes to marrying, WE ARE NOT IN A POSITION TO BE PICKY! Your son will be lucky if he ever gets the chance, and if he passes it, he is going to spend the rest of his life going crazy with sexual deprivation, or eventually his hormones will force him to find relief in prostitution. This must sound HORRIBLE to you but it is only the bare truth. Your son should get married without batting an eye to the first woman willing to take him. The sad reality is that any kind of woman, schizophrenic, retarded, drunkard, neurotic, anything above a street walker, is a reasonable alternative to spending the rest of our life alone.
I am not exaggerating here. The subject has been discussed extensively, and the bottom line was not what is the lowest we are willing to go, but who at all is willing to take us. I know of somebody who purposely searched for particularly ugly women, obese women, old women, for any woman that could be starved and desperate enough to take him, and he was rejected every time. My friend Arthur, was recently devastated because he was rejected by a schizophrenic drunkard. You probably get the picture.
So maybe a pragmatic thing to do would be to forget about real friends, and to concentrate on finding somebody with whom to share a common interest.
Now that I come to think of it, that's what my dad did with his orchids. He joined an orchid society in Miami and made a number of 'friends' who were not quite his friends but still were his friends in an odd sort of way. One of them, Dr. Nardo Zaias, also became a close friend of my uncle and several other members of our family, and this strengthened his "friendship" with my dad.
A word of caution: Several adults with prosopagnosia have reported that when their sexual urge is diminished they have a much harder time telling people apart.
> Back in those days I was so horny that not
> even the cows by the road were safe from me :-)
> I was so desperate that I would have done anything.
> I didn't get into a homosexual relationship only because I
> didn't have anybody willing to take the receiving end. ;-D
> I honestly think the only way I'll ever get a woman
> 1...if I go out at night and mug somebody.
> 2...if I go to the whorehouse.
I remember that 30+ years ago, all these possibilities crossed my mind more than once. EXPLAIN TO YOUR SON THE RISKS INVOLVED IN TAKING DESPERATE DECISIONS!
Hello, this is my intro as well.
The list name of 'independent living' is a nice idea. This is something I can tell others how to do - was my first thought.
But am I living independently?
I have never lived a single day alone. My first 23 years went in my parents house, and the next 14 have been spent in my wife's house. Or, to be more accurate, bank's house - well, at least partially.
Well, I can cook - so I would not starve alone.
I have a job - so I could sustain myself.
I have a wife - so there is someone I can talk to.
I have three children - so probably I act like a father.
So - I am dependent on the grocery store, my employer, bank and my family.
But my wife complains that I sometimes live too independently. She and the children share a world. And then there is my world, which is somewhere else. Too far for her to reach, she says once in a while.
I just do not seem to touch the other world - but rather go on living there somewhere - independently.
On the other hand she says she likes these Asperger Syndrome people - like myself and my son - a lot. She says they do a lot of independent thinking. They are not pressed from the same mould as everyone else is. An Asperger always surprises with new ideas, although they lose their mind if milk is more than 4 degrees (Centigrade) warm or the morning newspaper is missing.
An Asperger is a lousy liar, says she. But their quest for truth is unbelievable. They don't mind if they crush themselves in the process if truth can better be attained that way.
An Asperger never listens to an authority. But they need to form their independent opinions, based only on things that they qualify as truth.
As an Asperger I've always felt that I have a kind of truth-sense. Where empathy, beauty and poetry may touch an ordinary person, truth attacks my deepest self, and deep truth just splices me open and puts me into an ecstasy.
And with truth I mean something that really explains how things are, what makes people tick or machines go. How is the universe laid down, or what makes a mosquito find its target.
So - back to the original problem:
What actually constitutes independent living and who lives more independently: An Asperger or a normal person?
And I am talking about courses where they constantly teach the child about mindstates. I doubt anybody has concocted any more exercises other than the "Sallie and Anne" tests that the Limeys use in their labs. Do you know anything about this that I don't know?
Have you ever tried exercising your 5 year old son with very simple tests like this?
1) Mary lives next door.
2) Mary found this morning that her bowl of sugar is empty.
3) Mary NEEDS to sweeten her coffee.
4) Mary comes knocking on our door. She has an empty cup on her hand.
5) What on Earth could Mary possibly WANT?
If he can't figure it out, don't give away the answer just yet, but ask him to put himself in Mary's shoes: You found this morning that your bowl of sugar is empty. etc. Then, What would you do to get some sugar? etc.
Can you imagine illustrated textbooks following those lines? And regular school courses for Asperger children using those textbooks?
I recently received a letter from a mom who would like to hear from other parents "interested in pursuing the formation of an educational program for children with aspergers with the focus on intensive mindstate training." To skip to her letter at the end of this page, click here.
If you ever talk to a shrink or a so called "specialist", be ready to catch him in the act of giving you "the idiot grin of the CLUELESS specialist." I have seen those idiot grins myself twice. Once from a shrink who specializes in autistic children (would you believe that? He probably never expected to be confronted by a very high functioning adult who would immediately notice his total ignorance), and once from a regular doctor. It is funny to see the reaction of most regular doctors: They just listen to you and smile and keep "mum's the word", hoping you will not notice that they don't have the friggiest idea of what you are talking about.
> Locally, there are some projects on AS but everything seems to be for
> children in the kindergarden range. Maybe they figure that anyone older
> can't be helped! I disagree. These projects are being run by insincere
> individuals and, of course, won't be successful or change anything for
> those kids. You're fortunate to have seen "the idiot grin of the clueless
> specialist" ONLY twice. I have seen it more times than I can count!
Maybe these insincere individuals have figured that the people most willing to part with their moola ($$$$), are the parents of children in the kindergarden range. Parents who just recently found about their children's Asperger's and who haven't had a chance yet to form a very low opinion about all "experts" and "specialists" in general.
I wrote a letter to Professor Frith a couple of years ago. Unfortunately, I lost my copy when my old 386's hard drive crashed. In my letter, I asked her if she knew of other adults who had managed to make sense, and also thanked her for having written her books. I remember that I couldn't hold my tears when I wrote my thanks. It went something like this:
I combed my thesaurus for hours until I had to conclude that the words that are needed to praise the work of the CDU scientists, just do not exist.Professor Frith was kind enough to answer my letter. Luckily, I made several copies of it, so I still have it. She is the leading authority in the world on autism, and yet, read her reply. Again, my point here is that there is no such thing as a specialist in autism.
May I take the opportunity to thank you for having written your books. What I have learned from them, has been the most invaluable gift that I have received in all my life.
Date: Tue, 11 Feb 1997 16:17:29 +0000
To: Hubert <email@example.com>
From: firstname.lastname@example.org (Uta Frith)
Subject: Re: Making Sense
Dear Mr. Cross,
Thank you very much for your kind message. I would be
very interested to
read your autobiography when it is available. I have learned much from the
writings of Temple Grandin and Donna Williams and others, and know that
much more needs to be learned about the minds of people with Asperger
syndrome. I wonder what you think the most disastrous results of untreated
Asperger syndrome are? Do they for instance include effects on partners and
other family members?
I do know some people who like you have managed to make
sense, but to my
knowledge they have not written about it. So, sadly, I lack quotable
material. You may however find likely individuals through self-help
With best wishes,
Prof. Uta Frith
MRC Cognitive Development Unit
4 Taviton Street, London WC1H 0BT
Phone 0171 387 4692
Fax 0171 383 0398
My advice: Do not spend a red penny on "specialists", "experts", or psychologists, unless you have a very clear picture of how your child is going to benefit.
The only two situations I can think of where I would spend my money on these guys are:
* If my child needed some sort of medical evaluation to attend school, for
* If my child needed a medical diagnosis to recieve SS benefits.
It's not only the money that you risk waisting. It is how you are going to feel when you realize that you were swindled. It is also how your child is going to feel.
If you don't believe how bad the situation really is, ask other parents who have been through it. The Usenet Newsgroup bit.listserv.autism is an excellent place to start.
According to my experience, autistics believe *exactly* what they are told.
I know that only somebody who is very familiar with autism will believe this story, but anyways, this is what happened to me:
I attended a religious school, where the priests spent a lot of time explaining to the students what hell was going to be for those of us who died with sin, and the importance of keeping one's slate clean just in case death came before it was expected. Being burned forever day and night, and the screams and horror, etc.
I never doubted anything the priests said, and what I did to avoid the possibility of hell, was to go to confession constantly, keeping myself in the Grace of God most of the time.
Then two things happened. I was playing one day with my mother's ironing board, and by accident, got a bad burn with the iron on my right wrist. The skin peeled off, and I spent several days with the awful discomfort of the burn.
The second thing that happened is that I reached puberty, and the priests had stressed repeatedly that the sixth (fifth?) commandment made it a mortal sin just to even indulge in our imagination in sex. Now, with the full rush of hormones, I could not keep myself in the clear even going to confession every time I could, which was on Fridays and Sundays, when I had to attend Mass at school.
To make a long story short, I became obsessed with a *fright* which kept me awake nights. I knew now how much pain a half second contact with fire (the iron) only the size of a half Dollar coin could cause, and I could imagine now what it would be like to spend the rest of eternity in hell, and I could not keep myself in Grace for more that a few hours. I started disrupting the religion class with concerned questions to such a point, that the priests decided to expel me. As a result, I lost the good will of my father, and on top of that, he had to send me to the first school that would take me: a military academy in Georgia; a hell-hole where I spent the worst two years of my life so far.
I went through lot of suffering, only because I never had anybody to advise me to take religion teachings with a grain of salt, as normal children probably do, and it took me many years to discard as trash all those religious beliefs they enemaed me with, and I still feel a deep hatred for priests and nuns (pedophiles and lesbians!!!) and everything that has to do with the hypocrisy of religion that I have not been able to shed, even though I now understand what happened and why.
> I don't want to start an argument as to whether we
> religion to our autistic kids or not.
Sorry, but I believe it is one of the worst possible cruelties, (albeit poorly understood by parents), to teach religion to an autistic child.
If he is getting religion from another source (like a private school), my advice is to explain to him that he has to take it with a grain of salt. That religion is mostly a matter of custom; rituals that we use to get married and to bury our dead. Explain to him that faith is just forcing oneself to believe in things that in all honesty we know very well they are not true.
> Thank you for your posting, I am a counselor and I work with people labeled
> austistic and aspergers among others. Your remarks articulate what I have
> noticed esp. with a particular person I work with, who often suffers from
> exactly the feelings you described. It is esp. hard because faith and religion
> is important to this individual, who while fortunately is now in a church based
> on love and kindness, still is terrified by pamphlets describing hell. Thanks
> just for talking about it as it helps me clarify for myself the best way to
> approach this.
I still feel that I haven't explained even a fraction of the damage that I feel religion made to me.
Haven't you ever awakened from a very bad dream that seemed to go on forever and you couldn't figure your way out? The peace you feel when you wake up and find that it is finally over? That's how I felt when I discarded all religious beliefs.
Do you want to read a horrifying post from a poor religious fellow Asperger who is going crazy with sexual deprivation, plus a total state of confusion that seems all too familiar to me? Click here.
Recently, I received this beauty of a letter from a mom in South America:
> <snip> A few days ago I met another Asperger child who is going
> to join our group. His name is Carlitos. He is obsessed with everything
> that has to do with the Bible and in his notebooks he has stamps
> of the Virgin Mary and Jesus and he knows most of the Bible
> by heart. His mom has told me that she is quite worried because
> Carlitos crucifies her sister's dolls and she has to hide the nails
> and hammer from him because she fears that he might harm himself
> should he try to crucify himself or something. This child is 10 years
> old and just one year ago was diagnosed as Asperger. His mom
> says he doesn't care if she is sad or happy and he doesn't ask
> her why she is sad or happy. I feel she has resigned herself and
> doesn't even try to help him because he lives "on another planet,"
> she says. I printed out the Spanish version of your web page for
> her in hopes that she can help her son. <snip>
If you are still going to pump religious beliefs on your autistic child, at
least have the minimal decency of not hiding the truth from him:
That choosing what you want to believe in is a personal decision, and as there
are countless people who do believe in God, there are also countless others who
are excellent fathers, husbands, brothers, neighbors -nothing diabolical about
them- that *honestly* believe that God does not exist.
I feel an irrational hatred for priests and nuns. I have a very valid reason for disliking them, but the deep hatred that I feel, I believe has more to do with an autistic obsession.
My dad had this irrational hatred for 'rich dad' kids. When he was young, his father lost his job, and his family went through several years of financial difficulties, while his cousins, which were the 'rich dad' kids in town, openly flaunted their money. He had a reason to dislike his cousins' behavior, but this grew into an obsession that caused untold harm to his own children when he became a very rich dad himself.
And I know of at least three other Asperger adults who also have these irrational hatreds. One hates miracle cures for autism, and his "Arizona Horseshit" posts to bit.listserv.autism have hurt parents who have no way of understanding what he is really talking about and how he feels and why; the other hates welfare and prefers to work for $1 an hour instead of receiving benefits; the last one seems to dislike writers, although I am not sure if his dislike is intense enough to qualify as an irrational hatred.
We can also catalog people by their own behavior. We use labels to try to understand them and even to try to predict what can we expect of them next. There are many more labels that we can use that I can think of: People can be nice, mean, friendly, dishonest, lying, dirty, selfish, 'crazy', intelligent, dumb, stubborn, lazy, neurotic, unpredictable, silly, unreliable, rude... etc, etc, etc.
The thing to understand is that by just using these labels, and people's relation to us (mother, sister, clerk, teacher) we can build a fairly complicated interpretation of reality, and we can go through a lifetime without noticing that we are missing anything important. (Mindstates!)
Our system of cataloging people works to a limited degree and helps us visualize what we can expect from each person. The problems begin when people change their behavior in a way that we cannot understand, or behave in ways that we are unable to catalog. Like somebody who is nice one moment and mean the next, or somebody who has always been nice and suddenly becomes mean. Sometimes we try to accommodate ourselves to their changes. We may say, "well, maybe we were mistaken before, and thought that he/she was a 'nice' person and we are now discovering that (s)he is really mean after all."
Or we may become confused. And once we are confused, we stop trying to understand. This is truly a curse, because you meet all kinds of people in life; the best, and the worst, and when you fall in the hands of the worst, they will be as mean with you as they want, or they will dump on you all the hatred they are carrying inside, they will mock you, or they will push you into harm, or they will do whatever they want, and you will only feel confused, and their perversity will go on and on and on ad nauseum, and you will not even try to steer away from them, much less try to understand why they are so wicked. I get depressed and regret my rotten luck when I start remembering all the misery that I went through for 45 years because of this.
If you want to get an idea of how bad this is, read Donna Williams' "Nobody Nowhere". For women the curse is even worse, because they can be taken advantage of in ways that we men do not have to worry about.
The reason I have done badly with the stuff I write, is that I give a very good picture of what it is like to be autistic. Temple Grandin sells so many books because she is hinting that autistic people can grow up to be PHD. I am hinting in my writings that autistic people may end up in a SORRY MESS, and people do not like that.Don't get the idea that Arthur is shifting the blame where it doesn't belong. He is good. He has this ability to say in a couple of lines and hit you with things that I would have to write several paragraphs to explain. The problem is that most of his poems are about our sad reality: despair, loneliness, hostility, and rejection. And as he says, people do not like to read this kind of stuff. Some selected lines:
Temple Grandin books are true for her, but not for the vast majority of people with autism. My poems really give a much more accurate picture of what being an autistic adult is like. Her stuff gives the idea that things are OK with autistic people when they're not. This is dangerous as people read this stuff and think things are OK and autistic kids will grow up to be PHD's. Then the next thing is that nothing gets done for us and we have to suffer all the more. This is very dangerous stuff, these books, and they do no favors to people who are really suffering with autism, and things end up not being done when they need to be done.
In about 10 years time when people's kids are not PHD's, people will be asking for their money back from this stuff. Well, maybe not, but you can see what I mean.
When I go into cafes, sometimes people move away.
I hate it when people do this. I hate this musical chairs business.
I've done nothing to these people, and they act like this.
I'm not a bad person. I don't smoke and I don't drink.
So why all this rejection?
I can't think what I've done to deserve all this isolation.
The social workers aren't coming up with any answers.
I'm coming up with more answers than them.
I am putting it out on The Net how lonely I feel.
I suppose I'll spend Christmas the same as last year,
and the year before that, and the year before that, and the year before that.
Kathy is like me, she writes for autism magazines, and she's in books too.
Maybe we have a lot in common, and then maybe we don't.
Anyway, she says I can visit, which is more than what most people say.
Lisa, when I think of you, I think of little notes.
You're always writing things down on bits of paper.
As for me, I have real trouble reading your mind.
My autism makes it so I can't read people's thoughts.
Sometimes you say you don't like me much.
But why do you look at me and smile at me the way you do?
Those aren't the looks of someone who doesn't care.
Itís no good appealing to people's better nature either.
As people havenít got a better nature toward Autism.
It's hard to come to terms with the fact that nobody wants you.
I am lonely tonight, but I still've got the phone,
it's good to keep hearing the dialing tone.
Maybe poetry and music will solve things after all,
and someone reading my stuff will eventually call.
There are two things that a parent can do to remedy this situation: To get a mentor student that will help, protect, and explain their son to the other students, or to have the teacher explain Asperger's syndrome to them. But this means giving their son a label, and they might hesitate to do this.
I wish my dad had given me that label from the day I was diagnosed. I wish everybody had understood my autism, instead of calling me 'nut' and 'crazy' which is what they did instead, day in and day out, while my dad at home induced me to pretend that nothing was the matter.
Coming out will let you give aggressive, intensive support to your child without having to worry what the other students are going to think about it. And a child who has intensive support, really has a chance of one day learning to compensate for his deficiencies to such a degree that others might not notice anything 'odd' about him.
Every time I read Katherine's post below, I get the warm feeling that at least there is this one person out there who genuinely cares about us, who likes us not in spite of being autistic, but because we are autistic. Notice the difference that her intensive support did in this case. If this child hadn't received it, his teachers would not be needing any convincing that he was autistic!
> I have just spent a grueling day in a school that
insists that the child I
> work with who has autism is "simply gifted and odd" and does not have
> any disability. I am fighting with the school to get support (a teacher's
> aide) and a supportive program when the school insists that the child
> "looks normal" and therefore does not have a disability that they need
> to support (spend funding on). They fail to realize that the child is only
> looking normal because he has had intensive support throughout his
> school career up until now.
> And now he cannot cope because the new school has pulled out all the
> special supports that he needs and insists that he behaves like a gifted
> and normal student.
> If I had not seen over and over the results of useful support for the children
> that I consult for, I would get very tired and disheartened about having to
> re-educate the people I have to work with on an everyday basis.
> Autism and Asperger's is an invisible disability. Unfortunately, most so
> called "normal" people have to "see it to believe it". Since Asperger's is
> undetectable just by appearances, people assume that it does not exist.
> All I need is to see one of the children I work for succeed; that makes it
> all worthwhile for me. I couldn't care less if the child knows how much I
> have to do to educate those around him. All I care about is that the child
> can become all of his potential. Or her potential.
> Though, I will admit that some of the children I have worked with have
> gifted me with their love. And truly, some of them just "light up" when
> they see me; they share things with me that even their parents can't
> touch. It's quite magical for me when I can share some experience with
> them. Ah, but I digress. Soon there will be enough educated people that
> I will not have to fight so hard.
> A book judged by it's cover makes for a shallow read indeed.
> Katherine Trudeau, BA, BSW, CPNLP
Remember that AS is a "hidden" disability. Our devastating deficiencies are usually very well camouflaged, and as a result, most of us go through life without getting the help that we so DESPERATELY need. Are we going to have a better chance of receiving any help if our deficiencies are minimized by calling them "slight"? Can you call "slight" our despairing loneliness and our incapacity to find a girlfriend and to lead a normal social life?
Even my dad, who had normal eye gaze and whose Asperger's was probably only borderline, was devastated beyond explaining by his deficiencies. Just look at his marriage to a woman that probably never loved him and probably married him only because he was "a good catch." Even with all his money, he must have suffered virtually the same hell we all go through.
Believe me: There is no such thing as a slight perception deficit! Our consciousness is totally and hopelessly in the hands of our unconscious perception mechanisms, and everything we see, everything we feel, we do because it is fed into us by them. Cut any of these feeding 'wires' and the effects are so profound that cannot be described with words. Even though I am going to risk losing credibility, let me put this extreme example: Other than going to jail, what stops you from taking a gun and go target practicing with the kids playing outside? Isn't it because you feel something for them (warmth, love, compassion, whatever) that will not let you do it? Otherwise it would be fun! If I took a scalpel and opened you up and knew where to cut, you would stop feeling that compassion. If there are people born with those 'wires' defective, then the things that I hear on the news, like the girl who left her newborn abandoned on a dumpster, would start MAKING SENSE to me for the first time. And the girl would stop being a wicked monster who deserves to be sent to jail forever and would become another human being with the rotten luck of having been born with a blown fuse like myself. What scares me is that I cannot find a logical spot where I can draw any lines. Once I started down that road, there was no stopping for me until I ended up concluding that human morals are only an illusion; feelings generated by unconscious perception mechanisms engineered by Natural Selection to maximize our chances of surviving and reproducing.
I am starting to suspect that the day the mysteries of the brain are unraveled, maybe 100 or 200 years from now, they are going to find that even our consciousness is also an illusion invented by Natural Selection, and this is going to prove to scientists -by reductio ad absurdum- that subjective conscious phenomena are totally and forever beyond the reach of science. But I am getting carried away here; I have been reading too many issues of Scientific American.
Anyway, my original point was that there is no such thing as slight autism.
The effects of any perception deficit are too profound for this to be
These two lines I feel like shouting them from rooftops with loudspeakers:
THE WORST SADISTIC CRUELTY THAT A PARENT CAN DO TO HIS ASPERGER SON,
IS TO KEEP HIM IN THE DARK ABOUT HIS DISABILITY, AND INDUCE HIM TO PRETEND THAT
HE IS NORMAL!!!
In 47 years, I have been through just about everything, and everything pales and nothing compares to the cruelty of not having been told about my Asperger.
I use the expression "sadistic cruelty" only because I cannot find better words, since there are no words in the language for this kind of injustice. Imagine that you had a blind child, and you saw him grow up and get old stumbling and hurting himself again and again and again with every obstacle in his way, day after day, week after week, month after month, year after year, and he never had a clue that he was blind and you never bothered to tell him, and you never gave him a cane to help him find his way. This may give you a faint idea of how I feel about this. Even the cruelty of having been born with this devastating deficiency is nothing compared to the cruelty of having been kept in the dark about it.
I have paid for it with misery and tears, and I don't think I am through paying for it yet.
And I am willing to bet my neck that this is happening again today and very often. Many parents just don't want to face the truth, and go on clinging to the hopeless hope that eventually, "he will grow out of it". Or that he is just odd, or that all he has to do is get his act together; that nothing is really the matter with him. Sheeeesh.
I have said or implied this before many times and I will repeat it again here: An Asperger can learn to compensate for his deficiency! All a parent has to do is (1) Explain mindstates to him, and (2) Teach him to figure them out on his own.
An Asperger can learn rules on what he should and he should not do, and how to behave in social situations. Rules and experience and a sense of reality can help him to behave in a superficially normal way, but this will only hide from others the sad fact that nothing makes sense to him and he doesn't understand anything about anything. He will show a total lack of common sense. He will make mistakes, from small non-consequential mistakes to huge blunders. He will make mistakes every time he finds himself confronted by new circumstances for which he has no rules and no experience.
An Asperger can also learn to his logic to figure the mindstates behind people's behavior, and in turn use those mindstates to predict people's likely future behavior. An Asperger who manages to learn how to do this, will have made sense of the world around him.
An Asperger who makes sense of the world around him, will have free will, and will know when not to follow rules and experience. He will have the FREEDOM to choose the best way to behave. HE WILL HAVE LEARNED TO OVERCOME HIS MOST DEVASTATING DEFICIENCY.
Amazon Books is offering a paperback of "Mindblindness" for only $11.20.
There are many books about autism and Asperger's syndrome, but they are all superficial. This is the only one that goes to the source of the problem itself: The brain at the hardware level.
What our consciousness 'sees' is not reality itself, but the output of battalions of highly specialized neurone co-processors that interpret reality in a distorted way engineered by Natural Selection to maximize our chances of surviving and reproducing.
We are blind to the existence of these unconscious perception mechanisms, and we confuse their perception of reality with reality itself. This is the reason why autism has been a mystery for so long, because it is not possible to understand autism without even knowing that these perception instincts exist.
Everything about this book is superlative. Autism is *very* *difficult* to understand even for us autistics, let alone Neurologically Typicals. This guy has the ability to explain autism with concepts that make things rather easy to visualize. Concepts so befitting that leave me wondering how he manages to invent them.
Let me give one example: As a kid, I didn't see people like objects, but I didn't quite see them as people either. They were there, but they were not very important. That is as far as I can go explaining how it was for me. The only thing I can add is that I am not giving you anything more than a faint idea of how it really was.
What does Simon Baron-Cohen do? He introduces the concept of "skinbags." Bags of skin that move and talk like people but that are not quite people.
"Skinbags" is precisely what people were for me. They moved and talked, but they had no feelings. It was not that I believed that they had no feelings; it was that it never crossed my mind to consider the possibility.
The book makes you realize right from the start that nothing really exists as we imagine it. Not even color exists. Color is only an invention of Natural Selection... "that allows us to identify and interact with objects and the world far more richly that we otherwise could." Bats could very well use colors to "see" ultrasound reflections the same way we use colors to "see" electromagnetic waves.
The warmth of a smile and the anger of a stare do not exist either. You feel them only because your unconscious perception mechanisms interpret a smile as "warm" and a stare as "angry" and feed the appropriate feelings into your consciousness.
It must be really wonderful to be able to look at a girl and *feel* the warmth of her smile. When I look at a girl smiling I feel nothing. No warmth, no nothing. Those perception mechanisms are burned out in us autistics, or for some reason they do not reach our consciousness, maybe because of a faulty wire someplace.
I read almost every book there was in the San Josť Public Library system, and I began to really understand autism *only* after I read "Mindblindness."
Believe me that I would give not $11.20, but an arm, or a leg, to have had my dad read this book when I was young! Of all my bad luck, maybe the worst stroke has been that all this information was not available 40+ years ago.
Order Simon Baron-Cohen's $11.20 paperback "Mindblindness" from Amazon Books.
Order the hardcover edition for $24.00.
Uta Frith is the leading authority in the world on autism, and yet I believe she is mistaken when she claims in this book that the underlying cause of autism is a "weak drive for global coherence."(*)
(*) Footnote: From a scientific view, she might have a point since global coherence is needed for figuring out mindstates. However, her books are being read mostly by parents and adults trying to cope, not by scientists, and they do not need this additional confusing complication.
After my dad died, I spent weeks, months, trying to compensate for "a weak drive for global coherence," and I never got anywhere. It is until I started figuring mindstates, that all the pieces fell in together and I began to make sense of the world.
Other than that mistake that becomes harmless once you know about it, this book is like an encyclopaedia on autism. If "Mindblindness" goes to the core of the problem at the hardware level, Explaining the Enigma doesn't leave a stone unturned in dealing with the symptoms.
The chapter on behaviorism is particularly enlightening. We autistics are behaviorists. All we can effortlessly perceive about people is the way they behave. Even now that I have learned to compensate, I have to keep a constant eye open to see that I do not take other people's behavior by itself and that I constantly try to visualize the mindstates behind it, and yet, I keep forgetting to do it all the time.
These two books together, "Mindblindness" and "Explaining the Enigma", make the perfect combination for a wide based understanding of autism: Its deficiencies, and the symptoms that are caused by those deficiencies.
Order Uta Frith's $25.95 paperback "Autism: Explaining the Enigma" from Amazon Books.
This book is written by six different people, three of them from the British Medical Research Council's Cognitive Development Unit. It includes a translation of Hans Asperger's original paper on autism, and chapters about adults with Asperger's and their biographical writings. There is also a chapter about families with Asperger's.
If I had only the previous two books and I wanted to buy a third, this would be my choice.
Some lines from the chapter written by Professor Frith:
"Asperger individuals seem to love talking about their interest, regardless
of whether one has heard it all before."
"Even the best adjusted individual with Asperger syndrome has more than the
usual share of problems."
"The case studies presented in this book, serve to document the severity of
the sometimes well-camouflaged handicap."
"Offensive acts can be commited by an individual who does not automatically
take into account other people's mindstates. Aspergers are not intent of
hurting other people's feelings. Hurting another person's feeling is a
behavior that presupposes an active mindreading mechanism, something which
they conspicuously lack."
"People with Asperger syndrome seldom find the help and sympathy that they
deserve and need."
"As we shall see, theirs is a devastating handicap."
"Asperger individuals seem to love talking about their interest, regardless of whether one has heard it all before."
"Even the best adjusted individual with Asperger syndrome has more than the usual share of problems."
"The case studies presented in this book, serve to document the severity of the sometimes well-camouflaged handicap."
"Offensive acts can be commited by an individual who does not automatically take into account other people's mindstates. Aspergers are not intent of hurting other people's feelings. Hurting another person's feeling is a behavior that presupposes an active mindreading mechanism, something which they conspicuously lack."
"People with Asperger syndrome seldom find the help and sympathy that they deserve and need."
"As we shall see, theirs is a devastating handicap."
Order Uta Frith's $22.95 paperback "Autism and Asperger syndrome" from Amazon Books.
I was only able to give a hint of what it is like to live in a world of confusion. If you want to read a really scary and heart breaking story, read "Nobody Nowhere."
Order Donna Williams' $9.60 paperback "Nobody Nowhere" from Amazon Books.
I have not been able to get my hands on this book yet, but as soon as I read it, it is likely to go to the top of the list, kicking out "Mindblindness" as my best book on autism ever.
I fervently hope that this book makes Web pages like mine redundant. I hope that it receives enough publicity so that it reaches every parent who has an Asperger child. If we adults had to go through so much unnecessary suffering, it would be even a worse injustice if it happens again when the knowledge to avoid it is available.
Order Patricia Howlin's $39.95 "Teaching Children with Autism to Mind Read" from Amazon Books.
Evolutionary Psychology Primer by Leda Cosmides and John Tooby.