Friday, December 19, 2008

My Firstborn Son-NB


My oldest turned 10 today. Double digits, I can't believe it. I think I have learned as much as he has in the last decade. My husband often talk about how the oldest child in the family sort of sets the tone for the other children to follow. In my family, I was the oldest. I was also a mellow child, not prone to athletics or breaking things, but deeply involved with books. So we didn't have any stitches or broken bones, and few broken windows. My husband often talks about how he followed his oldest brother's lead and would follow him anywhere, and do things just because that was how Raymond did them. One complication to our lives is that Ryan has Asperger's Syndrome. Not too badly, but enough that our family dynamics are a bit different than most. We also have very smart kids and an incredibly bookish mother, so maybe that was inevitable.
Today on RadioWest, a program on NPR, they broadcast an interview with an adult with Asperger's and he explained very clearly how he sees the world. Having that sort of perspective is very helpful to us as parents, to see how Ryan is thinking and feeling.
In the discussion boards a mother of several Autistic children posted a summary of Asperger's that I am going to copy here, as well as a link to the radio program. This is just a summary of her experiences, not a clinical discussion, but it seems to fit our son. So if you have an hour when your ears aren't doing anything, you could listen in.
RadioWest: 12-18-2008
Here goes.

Autism is a neurological condition rather than a physiological or a (wish I knew the word) "foreign invasion" condition. This means that it is not a virus or germ. It is not a matter of muscle, bone, or other structural problems. It is a condition of the brain and nervous system. You might say that "the parts are fine, but the network is down."

People understand physical conditions more than mental ones. There is a wonderful book called "The Out-of-Sync Child." It describes people who have difficulty with the basic senses like touch, sight, hearing, balance, and body awareness. The difficulties are because the nervous system is not properly conducting the business of receiving input, processing the information, and producing output. Often the senses won't communicate with each other very well. The hand doesn't handle what the eye sees with very much grace. etc. These issues are called Sensory Processing Disorders.

Almost all autistics have SPDs, but it is possible to have SPDs without being autistic. It is my belief that autism is the exact same phenomenon as SPDs but it extends into the realm of mental processes as well as physical ones. There are many inputs that we take in mentally as well as physically. These include verbal language, body language, facial expressions, tone of voice, implied meanings that are beyond the literal meanings of the words used, and probably many other mental processes that allow us to give meaning to what we see, to appreciate patterns, to do abstract calculations, and ultimately to have emotional responses to all the facts before us. Autism will probably not be well understood by science until we are better able to catalog these mental process like we have the physical senses.

The world around us provides far more information than we can handle. Our brain somehow develops the ability to filter and sort that input and turn that information into generalities that we can effectively use. Autism seems to be a variation from the norm in this process. Those variations can be advantages or disadvantages depending on what particular process is involved and how it is altered. This concept is the key to how autistics can be different from each other and yet have something in common. It might be analogous to the differences between a broken arm and a broken leg. There is something identical in the idea of a broken bone, but something very different between using crutches and using a sling.

Autism is often called a "spectrum" condition. This simply means that its severity can be thought of as a matter of degree. It is not like chicken pox where you either have it or you don't. It is more like eyesight where you can be blind or you may slightly squint or you may be at any point in between. It used to be that only the most severe cases were identified as autism. Once it was better understood, then milder cases were recognized. There is often a public fear of expanding the definition of autism because of the costs associated with severe cases. But this would be like refusing to recognize 20/40 vision as an eyesight deficiency for fear of needing to provide services associated with the blind. A pair of glasses is often just fine for most eyesight problems. Simpler accommodations can resolve many difficulties faced by milder autistics.

Those with Classic Autism seem to not think in language. Some don't learn to talk until after they learn to read. Most think visually. After they learn about the words they see, then they are able to figure out that the sounds we are making match up to those words and have meaning. When they do learn to talk, it still seems to be like a foreign language to them and they will learn it with varying degrees of fluency. The best explanation of this is in a book called "Thinking in Pictures" by Temple Grandin. She is a professor at Colorado State University. She is a classic autistic who had such a scientific talent that she eventually figured us out. It turns out that we are as mysterious to them as they are to us. She wrote the book explaining autism to us. It turned the scientific community upside down on the matter of autism.

Asperger's is the most clearly defined "sub-category" of autism. There really should be at least a dozen such sub-categories, but our understanding is still too primitive to define them.

The distinguishing characteristic of Asperger people, is that they develop basic linguistic skills just fine, often better than the rest of us. However, they miss out on non-verbal communication. Facial expressions, body language, and tone of voice have no meaning to them. (Remember, however, that this is all a matter of degree. Some miss more than others.) If you start looking away and checking your watch while in a conversation with them, they will just assume that you were curious about the time and noticed other interesting things around you while talking to them. Their vocabulary and verbal skills may appear to be better than average, but on closer examination, there is much that is missing. They don't use idioms very well if at all. They understand and meaning of words very literally.

Unfortunately, the non-verbal area is where all of the social clues are. They don't always lack the desire or the capacity to be social. They lack the ability to "see" what the rest of us expect them to do. Very often, Asperger people will get along much better with people who are significantly older or younger than they are. In these situations, the relationship is more clearly defined. It is obvious who takes the lead and is in charge of the conversation. They do poorly with peers because the relationship there is not pre-defined. It is negotiated in non-verbal ways. When an adult takes kids out to the playground, it is obvious who will determine the teams. When kids go out to play, who decides who will be the team captains to choose sides? It always seems to work out, but how? Most people "sense" who among them are the leaders. Asperger people can't make sense of it at all. For those of you who watch the TV show "Lost." Think of Jack and Charlie. Jack doesn't want to be the leader and Charlie would love to take charge of even one excursion. But the people ignore Charlie and always turn to Jack for leadership. Why? That relationship is all done in non-verbal ways. Asperger people are left out of the process and feel left out. But more than that, they often become angry at the fact that everyone seems to know what's going on and they don't. It feels like being shunned on purpose.

Common traits of autistics and aspies:

They absorb lots of facts, but do little to synthesize those facts into generalities.

They much prefer concrete thoughts to abstract thoughts.

They have difficulty "switching" between modes of thinking. ie, they may get stuck in "receiving input" mode (which makes them very knowledgeable) but they may need to be prompted to use that information to solve problems (which is why these "brains" can seem strangely helpless at times.)

They may have difficulty moving information from one part of their brain to another. As a result, they may actually just freeze up when a response is required, but they can give that answer after the need for it is passed.

They may be "ungraceful" in physical endeavors. This can include messing up in sports, but it can also result in walking with heavy steps, clunking things down on the table, etc.

Even when they are verbal, language does not seem to be attached to their emotions. They have emotions, but they rarely talk about "how they feel." When they do, it is often when they are pushed to extremes and blurt out that they are mad. Usually when they talk in anger, a transcript of the conversation will show that they talk about what should happen and what should be done (actions) and not about how they feel or whether other people like them or not.

They vary widely in their personalities. Some are extroverted and others are painfully shy -- to the point of an anxiety disorder.

To make sense of the world, they will either reject rules as silly and worthless, or they will follow rules very rigidly.

They will be quite uneven in development. They will often be noticeably better than average at some things and considerably worse than average at other things. It's kind of an all or nothing thing with them.

I hope this helps.

2 comments:

Jen said...

I haven't listened to the link yet, but I will. (It's too noisy here right now). As I read this I thought about developmental psychology. Mead had theories about stages of cognitive development. The way autism is made manifest could give support to some of the theories, about which cognitive processes develop together and at what ages.

You don't talk much about this topic so I tend to think you're dealing with it well. I definately think Ryan got the perfect parents for his best development.

lajendi said...

Hi, I'm laughing my guts out because I just tried to post my pic as one of your followers. But somehow it attached to Paul's alias- Ed Werder. So just call me Ed.