0. The subject matter of the Family forum

1. Hubert Cross: Understanding the Asperger person
A person with Asperger's gives an inside view on his condition so that (neurologically typical) parents might understand their AS children better.

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Topic: Issues related to family relationships, or dealing/coping with family difficulties.

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I believe that Asperger is highly misleading. An Asperger person looks "odd" to others. When they interact with him, they probably notice some of the symptoms that are characteristic of the disorder. But the devastating part of the disability usually goes unrecognized: That the Asperger child/adolescent/adult does not understand.

He does not understand because of two deficiencies: Fragmentation and Mindblindness.

For a througout discussion of Fragmentation, read Uta Frith's book "Autism: Explaining the Enigma". For Mindblindness, read Simon-Baron Cohen's book "Mindblindness". I can only give here two short paragraphs that should nevertheless give you a pretty good idea of what the terms mean.

About Fragmentation:

"Asperger persons 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 bits of information." (From Uta Frith: " Autism and Asperger Syndrome").

About Mindblindness:

Normal people mind read all the time, effortlessly, automatically, and mostly unconciously. It is the natural way they interpret, predict, and participate in social behavior and communication. They ascribe mental states to people: states such as thoughts, desires, knowledge, beliefs and intentions. Asperger people do not have these unconcious abilities. They do not mind read other people, and they may go through life without realizing that other people have mind states unless someone explains it to them or they read it in the books. (Adapted from Simon-Baron Cohen "Mindblindness").

If I am in a car and I turn the key of the ignition and nothing happens, instantly, associations will form in my mind and with little effort I get the picture of what is happening. I understand:

I turn the key, and nothing happens---and the lights on the panel go dead---the battery must be dead---This is a new battery---It is unlikely to go bad so soon---Probably it's dead because the alternator is not working---Or it could be the relay---Or it could be a fuse---If it is a fuse then this would be a piece of cake to fix... etc.

With physical things, my mind works as well as a normal mind. But when it comes to dealing with people, associations do not form and I only get a very simple picture of what is happening. I do not understand.

For some reason that is out of the scope of this article (weak drive for global coherence), my mind fails when I deal with people. Let me give an example:

Dad is with his son John. There are millions of facts stored in John's memory, including:

Fact A) Dad likes to say nice things to me

Fact B) I am learning to drive

Now, Dad faces John and tells him:

Fact C) Son: You are an excellent driver.

If John is normal, his mind is not fragmented. When his brain is processing his dad's comment, associations form between Facts A), B), and C):

Son: you are an excellent driver---Dad likes to say nice things to me---I am just learning to drive.

And he processes all this information...

I am just learning how to drive, so I don't drive well yet, and my father is telling me I am an excellent driver, so what my dad is actually doing is giving me a compliment, probably to encourage me to learn.

...and he stores Fact D) in his memory:

Fact D) Dad just said another nice thing to me.

And then he would probably smile and tell his dad: "Dad, you are so nice..." etc.

Now, if John has Asperger, he has a fragmented mind and associations do not form in his mind. When he receives Fact C) "Son, you are an excellent driver", facts A) and B) do not pop up into his conciousness, and his brain doesn't have anything to work with, and stores fact C) literally:

Fact C) I am an excellent driver.

And he doesn't realize that his dad just tried to make a nice comment to him, and he doesn't respond in an appropiate way. His father then reinforces his belief that his son lives "inside a glass" and is unreachable.

Actually, there is one problem with this example. (Maybe you noticed it already?): If John has Asperger, Fact A) ("Dad likes to say nice things to me") wouldn't have been in his mind in the first place because that fact obviously comes from information processed by a normal mind, capable of mind reading the other person's intentions. If John has Asperger, his mind contains only information stored literally.

The Asperger's mind is not totally disabled. Normally it will make some limited associations, but usually the result, instead of being useful to him, leads him instead to a state of confusion. For instance, in the above example, Fact B) could have popped up and John's mind could have processed it:

Son, you are an excellent driver---I am only learning how to drive---so I am not an excellent driver (?).

Since John cannot mind read his father's intentions, he just doesn't know what to do with this conflicting information and he is confused. (Again, he doesn't even look at his father, and he probably won't answer, and his father reinforces his belief that he cannot communicate with his son, which sadly, happens to be the case).

This happened and still happens to me all the time. When somebody tells me something with a second meaning, I usually become confused instead of trying to figure out his intentions.

I somehow "forget" to figure out his intentions. In other words, Fact E) doesn't pop into my conciousness:

Fact E) Whenever somebody tells me something, and as a result I feel confused, I should try to figure out his intentions.

This confusion happens so often, that parents should be ready for it. When the son does not answer, it is likely to be because he is confused because he cannot visualize his parents' intentions. They should then explain their intentions to him literally ("I am telling you that you are an excellent driver because I want to encourage you to continue learning"). If he still doesn't answer, it is probably because he is still confused. They should go on until he gets the message.

Since his birth, John has been storing nothing but literal information. Not only his mind doesn't work. He doesn't amass experience ("My father likes to say nice things to me") as a normal person does. It is a huge and constantly growing empty snowball made emptier yet by the fact that he grows up without having any significant social contact.

What can you expect of him if he grows up in this condition? It is hard to visualize let alone explain it. (For an eye opener, read Donna Williams' "Nobody Nowhere"). You live in a world where nothing makes sense and you do not understand anything about anything. You make blunder after blunder after blunder. People victimize you and you neither realize it nor stop it. You drive friends away. You offend people. You end up alienating your parents with your mindlessly stupid behavior. And all without even realizing that you are doing something wrong.

The more I think of if, the more I become convinced that the cases that we hear and read about, are only the ones where the person has been relatively successful in staying out of very serious trouble. Untreated Asperger is, in my opinion and experience, much more devastating than untreated schizophrenia, and one of the causes is that it is so damned misleading. The person looks so normal that parents never realize the kind of protection he really needs. I have done so many stupid things, like getting into a car and trying to find out how fast it can go! I could have killed myself (I came close several times) or killed somebody else. I could be in jail now for it. Or for any of the many stupid things I have done. Some Asperger people end up in jail. And they go to jail without even realizing that they did something wrong:

"Asperger people have been involved in some difficult [legal] cases. Typically, the Asperger individual, when apprehended, does not seem to feel guilty, does not try to conceal nor excuse what he or she did, and may even describe details with shocking opennes. Sometimes, however, law officers misunderstand and thus mistreat the unfortunate and unwitting culprit. This is specially likely in the case of the relatively well-adapted Asperger individual whose behaviour is superficially normal, and whose appearance and demeanour do not elicit the help he or she needs" (Uta Frith: Autism and Asperger Syndrome).

I grew up untreated, because 40 years ago, there were no books, and nobody knew what the underlying cause of autism was, neither what to do about it. Today, it should be different. Now we know that the Asperger child desperately needs somebody to explain him his disability, and what can he do to compensate for it. Somebody to explain everything that he doesn't understand. What he shouldn't do and why he shouldn't do it. And also as important, somebody who will set aside the superficial symptoms and go to the core of his problem. Somebody who will not let himself be caught by his highly misleading appearance. He not only needs to be taught to understand. He also needs to be understood.

I used to believe that today's kids with Asperger would have it much easier than we did, but that doesn't always seem to be the case. For months, I have been reading postings and web sites in the Internet, and I have yet to come across the most important words for Asperger: Understanding and being understood. In fact, in O.A.S.I.S., the best Asperger site I have found in the web, I came across an article of a mother who is wondering if she should tell her son about his Asperger, and she decides against it because she sees in his face that he already knows! (Shudder!)

Autistic children seem to be faring better. They are being tought to understand with the Loovas method. Probably not everybody realizes that that is what behavior modification does: To teach the child to understand:

Look at me! (Understand that I exist!)

Horse, cup. (Understand that the babble you hear has a meaning!)

No! (Understand that you should'n do that!)

Now that I know about Asperger, I have been slowly putting together some of my experiences and knowledge to derive useful meaning from previously unconnected bits of information. I will give an example:

When I was six or seven, I remember my father game me a speedometer for me to play. The needle was stuck. I tinkered with it with a magnet I had, and the magnet pulled on the needle and released it. Then I found that I could move the needle to any number I wanted by sliding the magnet at the bottom. He then told me that he wanted it back because I had fixed it and he wanted to sell it. I told him it was mine. He asked me what I wanted in exchange for it. I told him I wanted six batteries. The big ones. He went out and came back with the batteries in a small bag. I gave him the speedometer and he gave me the batteries. I was fascinated by the color of the batteries. They were "Ray-O-Vac", shiny blue on yellow, my favorite color.

Unconnected bits of information. Things stored literally. But now I am able to put it all together to get useful meaning from it:

When I was about six or seven, my dad gave me a speedometer for me to play. The needle was stuck, and instead of throwing it away, he brought it home for me to play. I tinkered with it with a magnet I had, and the magnet pulled on the needle and released it. Then I found that I could move the needle to any number I wanted by sliding the magnet at the bottom.

When he saw it, he couldn't stop chuckling. He told everyone on sight that I had fixed it with a magnet. After a while, it dawned on him that he could take it back and have it sold. He negotiated with me and we settled on six Ray-O-Vac batteries. He then went out to buy them himself (The man was a millionaire; he could have sent one of his employees, but he went himself!). I remember when he came back with the batteries in a little brown bag and we traded.

Now I realize how much he must have enjoyed that episode. My old man. He passed away last year. I could never communicate with him. When I read the books and started getting out of the cloud of Asperger, he already had advanced Alzheimer's.

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