The Inside Story -- Adapting to Sensory Deficits
by Patricia E. Clark
Prepared for Autism Asperger Publishing Company Conference
March 7, 2003
This is a draft, not the actual speech as I gave it -- but its pretty close.
The Web sites cited in it are:
Heres a quote from the new CDC web site describing Autism Spectrum Disorders. Thats an official name change, from straight autism, aspergers syndrome and pervasive developmental disorder to ASDs.
There is no known cure for Autism Spectrum Disorders (ASDs). However, early and intensive education can help children grow and learn new skills. The goal of these programs is to reduce the symptoms of an ASD in a child. Medicines may relieve symptoms and be helpful to some children.
********Im wondering how many people here see the goal of bringing up their children as reducing the symptoms of ASD ??
There is a question of basic viewpoint involved here. I was surprised to find the treatment goal stated this way, and I dont agree with it at all . Maybe Im too literal to be reading these official government handouts. I see the goal of caring for a child with autism as helping the child develop his own potential.
Im going to compare myself as an autistic adult with some imaginary scenarios. Ill show that autism is NOT just a bundle of symptoms. Its a way of being of that is different for each person who is autistic. The key to developing us into the best person we can be is to tease out our abilities, not snuff out the behaviors caused by our inabilities.
Lets say that the two symptoms you most want to remove from how the child is are not talking and head banging. How would you go about that? Im going to contrast how autistics are often approached, and apply those methods to an imaginary adult as well.
How would you manage behavior in an adult? Suppose an employee has always done word processing, but you want him to write computer programs. It looks the same to you -- he would be typing it on a computer keyboard, just like he does his word processing. The employee has not written programs , but its something you want to see him doing. Just like you want to see your child talking.
You make a list of what you want this program to be like and give the employee a deadline. In our parallel case, you also have an idea in your head of how you want your child to talk at different ages and stages of life.
You go away for three days, and when you come back to work there is no computer program. There is just a very upset employee with all the physical equipment he needs to be programming, but he is not doing any programming. The same goes for the child at home -- he knows he is expected to talk, but nothing is happening.
You wouldnt really do this. The reason is that we know there are skills the employee needs to learn in order to program. There also are some abilities required for programming. Not everyone can do it. Some people can learn to get by at it, but will never be very good at it. We all have different knowledge, and different brains. This is easy to acknowledge in someone who is adult and whose mind works in a way similar to our own.
To push this silly scenario a little further, pretend someone tells the employee that he will be fired if he cant produce a computer program in a week. Hes only a word processor, so he doesnt know that programming lessons are available on the internet. He thinks there is no way he can succeed, so he gets very frustrated and depressed. He feels the whole world is unfair. When no one is looking, he starts to quietly bang his head on the wall of his cubicle.
A different employee in this situation might do better. He could explain to his boss that he needs to learn programming skills to succeed. He might find an alternate computer program that would do the job. He might ask for time to take a programming course. This employees key to success would be having a lot of experience solving problems so that he knows how to go about solving theis one. He assumes that some way can be found to work out a solution.
Carrying on our lets pretend world, we could decide that the employees failure to program requires a behavior modification and reinforcement program. Should he be disciplined for head-banging in frustration? Maybe you could just drug him during working hours so he isnt as sensitive to criticism. In the meantime, he is not making any progress towarding learning to program. However, he now sits quietly at his desk and doesnt disturb his coworkers.
*************What symptoms of autism would YOU like to see your child stop displaying?
Just as in this employees case, we need to understand why unwanted behavior is taking place, and help the autistic child work to overcome the reasons it happens.
The feelings and information a child gets from his world can be so confusing that nothing makes any sense to him. Head banging might be the only sensation that seems to have a cause and effect. He needs to feel that some parts of his universe are in his control. Head banging is a simple and direct way to get that feeling.
In order to stop this self-injurious behavior he needs to find other ways to feel control over the world.
Back to our silent autistic child, his not talking is probably caused by a several problems together
Maybe he cant connect what he hears with whats happening
When I was 3 I forgot how to talk, and I forgot what talking was. When I heard my parents speak, I didnt understand that those noises were coming from the people in the room with me. I didnt know that they were communication.
Maybe he thinks that your mind knows exactly the same thing that his mind knows, and that he doesnt need to tell you anything. Some autistics are slow to understand the point of view of other people.
He might have an idea of what needs saying, but not be able to find the right words to say it.
Perhaps he has muscle control problems that keep him from coordinating his breathing, tongue, throat and other mouth movements to make the right sounds
Any problems that stand in the way of speaking have to be solved before this child can carry on a conversation.
Heres an example from my own experience:
When I was six I didnt understand much of what people said. I didnt say much, either, and that was mostly yes or no to questions. I could ask for things around the house, but I remember being corrected about not saying things right. I would have to repeat anything I said before someone could understand it.
I remember that in those days I was never sure which words people were saying. I understood the meanings of many words. But so many words sounded the same to me that I seldom was sure which ones I was hearing.
I couldnt understand conversations between people. I wasnt learning anything about chatting or politeness, because I had no way to know what was going on between people.
I was so lucky. When I started learning Phonics in first grade, I suddenly found the key to knowing which words people meant for me to hear. There was a written form for every word, and it never changed. I could pin down the meaning if I knew how the word was spelled. In my enthusiasm, I learned to read almost overnight.
My real-life conversation didnt change much, because I still couldnt understand sounds any better than before. But by concentrating on what I could do, I was reading adult-level magazines such as Saturday Evening Post by the second grade.
Although I didnt have a lot of social-type speaking interaction, I got some social experience by reading fiction in magazines and novels.
Reading has always been my strength in learning since then. And I have become more sociable since I learned to chat with people in writing on the internet.
Every person,,, child or adult,,, has their own pattern of strengths. They will find and use these if they get the chance. They need to explore many different activities so they can discover new abilities as possible ways they might overcome their problems .
Our brains are learning machines. Even with many different learning disabilities, we work to understand more of our world. We want to change it instead of being tossed around by it.
Heres another personal example. This chart shows some of my tested levels of ability and disability.
Show large paper graph
Five areas that are not good at all are
visual awareness -- I actually dont know what I am looking at
Slow speed of rote memory -- I have to stop and memorize things right in the middle of whatever I am doing
Digit symbol -- I cant keep anything in mind long enough to copy it from one paper to another
Sequencing -- I remember everything in a lump. The memory gives me little idea what came first -- I have to figure that out as I go. I didnt even believe cause and effect or before and after when they were first explained to me in school.
Processing sound with meaning -- I am too sensitive to noise, but I dont recognize much of what Im hearing.
There are three normal or high abilities to work with on this chart:
Logic - that helps me figure things out from only partial information
Abstract Forms - I have no idea what this means!!
Meaningful whole -- I am at least average in figuring out what things mean if I can get enough through my senses information to work with
Im going to get more into rote memory further along and show how one of my weakest points has turned into the main way I successfully adapt to my disabilities.
There is a pamphlet available on the internet that lists things parents can do to help a child learn to adapt to these kinds of disabilities. It also gives information on how to go about the slow teaching that needed to remediate areas the child does poorly at.
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Is there anyone here who has an autistic or aspergers child who does NOT seem to have some kind of attention deficit? It doesnt matter here whether or not ADD or ADHD has been diagnosed separately.
Attention problems seem to include a problem with sequencing. People with ADD or ADHD might not have a good sense of the order in which things happen.
Studies are being done with MRIs and other equipment to find out how normal brains react to Real World, Real Time events.
Peoples ways of sensing the order things happen in seem to affect how they describe the ways they think.
For instance, people who are neurologically typical often say they think in words. They say they just naturally use words as the way to describe how things are, how things will change, and what will happen after right now. These people enjoy telling stories with a plot (where things change according to causes). They use the idea of time, and set their activities up by schedules.
People who are autistic are described often as visual thinkers. Their thoughts just appear. I personally can see in my mind something like a tinker-toy animal. Pieces are stuck together in a mass of struts and connectors. The thing extends off into the distance further than I can see. The arrangement is too complicated for me to draw. Its three-dimensional, and the details disappear as soon as I zoom in to check them out.
If you ask me to describe what Im thinking, it takes me a long time to convert that to language I could expect you to understand.
This thought-critter is a description of how something is, and perhaps how it relates to other things. But there is no indication of time or of change in the future. Its just how it is.
Recently I talked to a computer programmer who has a third way of thinking. In programming, you write out what has to happen, and in what order it has to happen, to make events occur and end up a certain way. My programmer friend told me he thinks pretty much like a slide show-- first one slide showing how things star, then another showing the next step. More slides replace the older ones as things change over time. I think he probably has some type of attention disorder, because I know him. But his attention isnt nearly as bad as mine is, and his way of thinking shows the difference. Still, he is not thinking entirely in words like the classic example.
This silly chart shows a part of the thought-tinkertoy that, to me, represents being here, now. It doesnt make sense, even to me. I am unable to draw enough of it to convince even myself that this thought is the least bit organized or complete. No wonder I cant sort or plan anything, with only this kind of thought to work with.
++ + + + + + + + + + + +thought CHART
Since my thoughts seem to me very much like this mess, I have some trouble with memory organization. I am terrible with any other type of organization too, for that matter. The only type of memory I have available is Rote Memory, which is not very flexible. It puts things in a permanent place. They cant be easily shifted around to use in planning.
Because my senses of vision and hearing and so limited (remember the first chart), I have to rely on memory a lot to operate on. Im not able to keep checking the Real World -- it takes too long and makes me act more autistic. So I memorize where things are and just reach for them where I last saw them. You can probably guess that I often cant find things either in real life or in the rummage heap of my mind. Real life things move in relation to each other without my noticing. Mental things get stuck in old positions and arent where they need to be to fit new, improved ways of thinking as I continuously learn throughout my life.
So, I have a chronic problem finding information in my mind. Thats true for words, for my kitchen pans, and for separate thoughts I need to connect in my memory.
Since I am working out of memory in my head, I cant tell whether the connection I see is real or is just because of the locations in my mind. If you know me for a while you will find me talking as though I am disconnected from my own words. Then I look surprised that you dont see the connection my way and I have to explain to you what Im talking about.
What else is wrong with using rote memory ? It takes a lot of time and effort. My memorization speed on this chart is down at about the 8 percent level. This is less than 1/5 the speed the normal person files information away in their head.
Other types of memory are Short Term Memory, or knowing what is going on right now, and Long Term Memory, where you file what you dont want to forget about what is happening now.
Since I use only rote memory, I need extra time to file my longterm memories. I process memory in the background of my brain. This is like printing in the background with your computer. The computer continues to run, but it slows way down. So does my brain. I act spacey and have trouble changing my attention from one thing to another.
If you do get my attention, Im happy to talk to you for a while. In a few minutes, my background memorization slows me down. I have to stop chatting and get away to a quiet place to let the memory processing catch up. If I cant get away fast enough, I go into overload and am not able to stand any new information coming to my senses.
Some days, when I have too much to do, I feel like my memory disabilities put me only THIS FAR from not being able to remember anything at all. If that happened, I would live in an endless, unchanging present.
People find me maddening to work with. Im a difficult employee. I cant measure up to how bosses want their employees to look and act. I get angry and feel self-hatred when I see I am not meeting the standards for being a regular human.
After being tested as an adult, I was diagnosed learning disabled - not otherwise specified. I was told that I do a good job of adapting to my disabilities. This makes me more functional than my test scores would predict.
Originally I named this talk compensating for disabilities, but I found out that is not the word that is used by educators. The right word for working around a disability to find a way to function is spite of it is called Adaptation. If you want to find information on the internet, the first step is to find the right word to use in search engines.
Write on board ADAPTATION
I have led an interesting life. I have had more kinds of experience than most people do, and I used it to learn how to take my life in the directions that I want it to go in.
To prepare for helping a child adapt to disabilities it helps to know what those disabilities are. Luckily, its possible to test for many of them separately.
There is even a new computer research program that both finds disabilities and also analyzes the childs learning style. That can help parents and teachers speed up the teaching process so the child learns better and faster.
This research program uses a computer in a game-like program that children enjoy playing with. Its likely that this testing will be more generally available before long.
You can read about it at the web site http://bion.psy.ed.ac.uk/research/par_bro02.pdf
This idea of finding out what a child does well, and what he does poorly, lets you work with his strong points to help him advance. The child enjoys this far more than he would repetitive drilling or ABA on his weak points. He also learns better by using his strengths to adapt to his weaknesses. There are cases where you just have to work on deficits to make progress, but good judgment is needed about when to do that. It is not the obvious, only way to educate a child.
Although my adaptation of slowing down to wait for my memory to catch up causes me some problems, I have achieved so much with that techique that it has been worthwhile. I have a lifetime of events and feelings to look back on. I made myself functional enough to have interesting jobs, live overseas on my own, and raise a family. What kind of hollow shell of a person would I be if I had not extended my horizons as far as possible?
Now I have another word:
Efficacy EF ee ca see
WRITE IT ON THE BOARD
Definition: The capacity or power to produce a desired effect
The saying Self Efficacy was made up by Albert Bandera of Emory University in 1986.
According to Bandera, Self-Efficacy means believing in your ability:
and to carry out
actions needed to manage the situations in your life.
People who believe that they can find a way to solve their problems
People who are aware that they have problem-solving abilities
People who have a solid history of solving problems in the past
Can stick to the business of working out problems and make a difference in their own lives
The choices we make
The effort we put out
How long we keep trying when we face problems
How long we keep trying when we see ourselves as failing
How we feel -- triumphant, depressed, or just satisfied that progress is occurring
Belief in our own power to work for our own success, makes us work to reach levels of accomplishment
We believe in the levels we are aiming for
We have a strength of belief that carries us through the rough times
We accept small steps toward our goals; we do not give up just because we arent all the way there yet
Wouldnt self-efficacy be a wonderful thing to teach to a child? We all have limitations of one kind or another that we need to adapt to
It isnt until the final day of our lives that we know what limits we have. Thats because we cant measure what we did and did not accomplish until that last day. Until then we are always striving and learning and adapting so that we become more functional.
The results of all this striving depend on the attitude and effort we put into developing ourselves. We just named that attitude and effort self-efficacy.
I have an example of my own self-efficacy. I bought a computer ten years ago, which completely changed my life during the time since then.
I had no idea that the computer would save my life through research. I found out who and what I am through it. I earned a little money through networking. I met hundreds of people through email and internet relay chat. I met the person with whom I want to spend the rest of my life, and who is responsible for my being here in Atlanta at all.
When I bought the computer in 1993 I was trying to succeed in college for the third time, having flunked out twice. I was raising teenagers alone, having married an abuser who abandoned me overseas. I was going onto welfare because I had run out of ways to earn enough to keep housed and fed. My health was failing. I was having trouble transporting myself and my children for school and medical appointments. The reactions of some people to these problems might be despair and depression, with retreat into themselves.
Well, I wasnt feeling very good about Things in General, but I invested the little money I could get my hands on in the new world of personal computers. I didnt feel that blowing it on clothes or a vacation or a used car offered any way to improve my life permanently. The computer seemed to offer more possibilities for growth than the usual fun things.
Although told I am too disabled to graduate from high school, I have done better than that. With Self-Efficacy, I graduated from high school a year early after skipping a grade. I have an A.A. degree from a community college, with an A average grade. I worked for 25 years, some of that time in fun and exciting work that stretched my abilities to their limit. I have two adult children who are supporting themselves. I earned enough that my Social Security Disability retirement earns me a bit more than I would get if I had simply gone onto SSI at age 18. I have a fun unpaid career helping people solve the problems I always needed more time and help to solve for myself.
That has to be due to my personal self-efficacy. Yeah, its not polite to brag. Still, I believed in myself and put the effort out on a daily basis to just deal with whatever came up. I kept my forward path. Thats what allowed me to enjoy the kind of life I can now look back on.
Im proud that, when I was six years old, I believed that I would be able to conquer the world of words and language, and that I finally recognized the key for my own way to understand it.
So, what has been my point here? Three things:
First, behavior is not the enemy. Your child behaves a certain way because he cant experience the world the way you do. Helping the child work around problems will improve his ability to adapt. That means his functional level will increase some amount. That helps some of the behaviors to take care of themselves. You will be more able to sort out which ways of behaving are mirroring misery or confusion, and which need actual behavioral types of correction.
Second, letting the child work out his own unique ways to process information is the key to development. Just because you follow a certain method, or it seems logical to find a problems solution in a certain way, does not mean that your child can or should do it that exact way. Be joyful if he recognizes the need to solve the problem, and works out his own way to do it.
Third, we have to believe in ourselves, experience problem solving, and have faith in our ability to continue solving problems. Otherwise we dont make lifelong progress in community living and involvement. If your child isnt mature enough to live on his own at age 18, he can still rstrive for that at some later age, even 30 or 40 years old. We keep developing more competence if we learn to adapt ourselves to higher and higher levels of function through experience and attitude.
Approaching your child as a package of behavior problems to be extinguished isnt likely to be the most helpful way to approach him. Identifying strengths and weaknesses, then looking for ways to teach him to work around them does help.
Encouragement, praise, reward and unconditional love help children develop the ability to believe in themselves. This increases their ability to become more and more involved in living throughout their lives.
It doesnt seem like much to ask to love your child, warts and all. Its all or nothing for the child. Either he is an acceptable human being who needs help, or he is not acceptable. Please make sure which message he is getting.