Friday, April 18, 2014

What is Autism? (or) Why Does Tate Act That Way?

The following is what I would hand to a Junior High or High School student to read if they asked me to explain autism. The Center for Disease Control has just come out with new numbers and the rate of autism is 1:66. There is probably almost no one left that does not know someone with autism. It is important that people understand a little bit about this disorder. I wrote this with Tate in mind and not all of these things would apply to EVERY person with autism.

What is autism? Autism is a disorder that affects the way a person thinks. A germ does not cause autism. Autism is not a disease. People do not “catch” autism. A person with autism thinks much differently than a person without autism. When you THINK differently, you ACT differently. Being different is not a BAD thing to be but sometimes being different is a HARD thing to be.

There is a saying that goes like this: If you meet one person with autism, you have met one person with autism. That means not every one that has autism acts exactly alike. Even though people with autism are not just alike, they often have a lot of similarities.

Albert Einstein was a brilliant man. Many people believe he had autism.  He once said, “Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.” This quote really hits the nail on the head. We cannot ask a person with a disability to perform as if the disability did not exist.

When most children are small their brains are like sponges, absorbing all kinds of things. They are always taking in new information and watching people to see how they behave. Children should be learning from the world around them. The brains of children with autism are not soaking up the information around them. Everything they learn has to be taught to them differently, in a much more structured lesson. It does not mean they are not just as smart as other kids. Actually they are sometimes VERY smart. They just learn differently.

Kids with autism can barely tolerate some of the things that seem perfectly acceptable to the rest of us. They may hate to be touched, or the opposite and like lots of touching. A small flickering light that most people can ignore could have the capacity to totally captivate the attention of a child with autism. A noise out in the hall that you barely notice might keep them from being able to concentrate. A scent that you find appealing has the potential to make a person with autism gag. If you ask a person with autism to taste a new food, there is a pretty good chance they will say, “no!”

What if everyone talked faster than you could think? Imagine living in a world that you did not understand. Imagine your teacher was speaking in a language you did not understand. You were still expected to do the schoolwork and while you were busy working, the school bell started ringing and wouldn’t stop. Even with the loud noise, you were supposed to concentrate on the assignment. Oh, and the whole time, there were bees buzzing around your face, the room was way too hot, and your shirt was made of sandpaper. Now imagine your teacher asking you over and over, why you had not gotten the assignment done? All your classmates finished. They got the instructions in a language they could understand. They never heard the school bell going off at all, and they did not have one bee bothering them. They thought the room was the perfect temperature, and their clothing was very comfortable. Remember that fish that should not be expected to climb a tree? How about that student that should not be expected to perform as if he did not have a disability?

People with autism are often called “concrete thinkers” and they have trouble imagining things the way the rest of us do. When they are young pretending is not something they learn to do without help.  Thinking about what will be happening tomorrow is not easy for them. As they get older they have trouble mastering many of the concepts they need to understand in order to succeed in school. A concrete thinker will probably need to use visuals with their math to help it make sense. A concrete thinker might be able to define for you what a policeman is and what a jail is for but he will not be able to explain ideas like justice or freedom.

Communication is not easy for a concrete thinker. A person with autism might not understand that a word can have more than one meaning. For example, if you heard someone say that a football player ran ten yards you would picture him on a football field. A person with autism could be picturing a man running through a neighborhood, jumping fences and dodging swing sets, as he ran across ten lawns (yards). Then there are idioms and other ways of saying things that make no sense to a person with autism. If you say, “He got cold feet and chickened out” then a person with autism might picture a barefoot man standing next to a chicken in the snow. Top all that off with puns and sarcasm when we say the opposite of what we really mean and communication becomes very complicated for a concrete thinker. As you go through your day listen to all the language around you. If you hear things like, “It was a piece of cake” or “He pigged out at lunch" think about the confusion a kid with autism would be having understanding what is being meant by these things.

A person with autism will probably speak differently than you do. Their voice may sound odd. It may seem stiff or sound monotone. It is sometimes hard for a person with autism to organize their thoughts and express them. They may use words that seem strange and their thoughts may be strung together in a way that does not make sense to you. Some people with autism are unable to have a conversation with give-and-take. They state facts or make comments but they do not seem to be interested in your participation or opinions.

A person with autism might talk about unusual things or a topic that interests them for extended periods of time. Maybe they are interested in movies, video games, computers, castles, trains, vacuum cleaners, geography, calendars, presidents, trees, insects, or another topic. A person with autism finds it easy and enjoyable to focus on something they are interested in, but very difficult to focus on anything they are not interested in. That makes it very hard to learn new things. Here’s an example: Tom is so interested in volcanoes that he can name almost every active volcano in the world. He can tell you all kinds of statistics about volcanoes and lava. However, Tom cannot seem to remember anything at all the teacher has told them in history or science unless it involved information about volcanoes. Not every person with autism has special interests like this but many do.

Most people are developing “theory of mind” before they enter kindergarten. This theory of mind is just the understanding that other people are thinking things that you may not be thinking. They may not like the same things you do and they may really like things that you do not care for. Understanding that other people do not think exactly the same things that you do is pretty important. Without this understanding it is really hard to make friends and maintain relationships. People with autism do not understand the teamwork of friendship so they need a lot of help from people who are willing to become their friends.

Repetitive behavior is an issue for people with autism. Repetitive behavior can seem very odd. Often when a small child has autism they like to watch things that spin or they drop things and watch them fall over and over. A child with autism can spend so much time doing these things that they miss out on many opportunities to learn new things. Spinning things and watching things drop are only a couple of the things that children with autism might find entertaining. These and other behaviors are called “stereotypic behaviors” or “self-stimulatory behaviors.” Sometimes we just call them “stims” for short. A kid with autism might like to pace the floor, walking on their toes with a sort of bounce to their step or make the same noise over and over. Perhaps they wiggle their fingers or even flap their whole arms. When they are engaging in these stims it seems to make them feel better. They do these things when they are excited or stressed or just bored. It will be hard to get their attention on something else but it is good to try.

Stress is a big part of the day for a kid with autism. Kids with autism prefer a schedule and they have a need to know what is coming up next. Transitions from one activity to the next cause them stress. Surprises can make a person with autism very anxious. Having a routine makes life easier if you have autism.

People with autism have trouble looking at others’ faces. When you talk to a friend you look at them. You watch their expressions. You can see if they are paying attention and looking back at you. You would be able to tell if something you said made them angry. If they seemed bored or were looking away then you would understand that you should change the subject or find a different friend to talk with. Making eye contact is a very important social skill. People with autism have to be taught social skills that just came naturally to the rest of us.

Along the same lines as watching a person’s face and expression, people with autism have trouble figuring out what a person is looking at. Have you ever noticed that when someone seems excited or upset you look at their eyes to see what they are looking at? Then you follow their gaze to see where they are looking. These are the kinds of things that a person with autism has trouble doing. Some people call it “thinking with your eyes” because we usually look at what we are thinking about and most of us use our eyes to communicate many things. People with autism have to be taught to “think with their eyes” but to most people it just comes naturally.

Because a person with autism has trouble looking at faces, it means they cannot always identify a person by their face. You might sit beside a person with autism for the whole school year and then run into them in the community after school but they cannot recognize you. Not all people with autism would have this difficulty but many would.

Sometimes when a person with autism is speaking they sound rude. They probably do not mean to be impolite and have no idea they are not being nice. It does not help to be rude in return. They will not learn from it. It also probably does not help to ignore the rude behavior. If a person with autism seems rude, and you would like to help, it best to gently tell them their words seemed rude and explain why. Do not go into a long explanation but if you can explain in just two or three sentences a better way to say what they said, or better tone of voice to use, you might be able to help them learn.
I am not sure you can really explain autism to a child much younger than five or six years of age because they themselves are just developing their own theory of mind and understanding that everyone is different. When a child is very young and a parent knows they will be exposed to children with disabilities I think they should probably just tell them that everyone if different and that is okay. Then remind them often to be kind to EVERYONE, even the kids who seem different than the rest.

I have a very simple description of Tate and his autism that his teachers’ used to present to his classmates each year when he was in elementary school. I have revised it several times over the years. It started off much simpler when it was being read to first graders. See attached: 

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