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Living with Asperger Syndrome by Ellen Stackle

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Asperger Syndrome is one of many diagnoses that fall under the Autism Spectrum.  Part of Asperger Syndrome is difficulty with social skills, language, and sensory issues. As the word spectrum implies, there are many levels of ability in Autism. Those who are closer to the lower end of the spectrum typically have great difficulty speaking, have many behaviors, and have difficulty interacting with others. Someone toward the higher end of the spectrum, like me, may still have the same difficulties, but not to the same degree.

As I mentioned before, part having Autism means you have difficulty in social situations. The best way that I can explain this is by sharing how it affects me personally. Many people have difficulty in new situations or meeting new people. It is even scarier when you have Autism. People with Autism do not do well when they do not know what to expect in a situation or what their role in a situation is. The anxiety that comes from this can scare them to the point where they shut down and withdraw. I personally have done this. If I am not familiar with the people or place I do not know what to do or how to act. Many times people with disabilities are picked on when they are younger, like me. This is part of what scares me even now. I get worried that I will do something wrong and other people with ridicule me. That plus anxiety makes it difficult for someone who wants to make friends. The fear and anxiety overshadows everything.

Language is huge part of life. Typically a person at the lower end of the spectrum has difficulty speaking. They may talk by making noises like yelping, grunting, or other high pitched sounds. Or they may simply repeat what they hear, or they may not speak at all.  One idea on how people with Autism speak is called “Theory of Mind”.  An example of how Theory of Mind relates to me would be when I try to tell a story. I have a tendency to leave out the background information or the set up of the story. These would be important pieces of information to help the person that I am talking to better understand what I am talking about. It may be an important person, a place, when the story happened, or why certain thinks take place. This is because I assume that the person I am talking to is in my head and knows everything that I do. Another part of language that is difficult is abstract thoughts and ideas. If I can’t see or picture something then it doesn’t make sense to me.  If I haven’t experienced something it is hard for me to imagine it. I’m a literal or concrete thinker. When people don’t say what they mean, or mean what they say it confuses me. It’s taken me a long time, and sometimes I’m still not very good at it, but I can finally tell when someone is joking or being sarcastic. This also makes social situations very difficult. Most language is unspoken. When you cannot read someone’s body language, perspective, or social cues you are at a great disadvantage. Many people with Autism may not know when to stop talking or understand that what they said was the wrong thing to say.

Everyone has their own personal bubble, a certain amount of space between them and everyone else that they feel okay about. Some people with Asperger Syndrome may have a larger bubble, while others might not have one at all. They may not understand that they are intruding on your personal space. Sensory issues can come in many forms. Some things that may cause a person with Asperger Syndrome to have difficulty are loud noises, bright lights, crowded areas, or even open spaces. Many people on the spectrum feel better when they spin or swing. It calms their sensory issues. Others like deep pressure. They may squeeze things very tightly or benefit from deep pressure. To some a light touch may actually hurt. Others cannot stand to be touched at all. Many of us have difficulty looking into people’s eyes. When we do it makes it very difficult to pay attention and process what is being said. We are too busy trying to figure out why a person’s face changes so much that we can’t listen to what they are saying. Others may have difficulty with certain textures, whether it is food or clothing. If something is too rough or has a tag or a rough seam then it is too distracting and requires too much energy. Sometimes when I someone with Asperger Syndrome does not realize that the feel of the clothing means so much. When it comes time for a teenage to go out and hang with friends, they may weigh the feel of the clothes so much that they can take a long time and keep their friends waiting. I personal do weigh the feel of the clothing, but usual the color gets me to notice it first, then I feel and if it feels ok I try it on. Many people on the spectrum have problems eating a variety of foods. Sometimes it is because of the smell of the food, the color of the food, or the texture of the food. This is one area that I personal do not have any problems with. I am willing to try any food and I like just about every food also.  When a person on the spectrum experiences these sensations that upset them this is usually when they have behaviors that get them made fun of or in trouble.

The behaviors may include spinning, flapping their hands or arms, or jumping up and down. They do these things because it helps calm their sensory system. When I feel this way I wrap my blankets around me like a cocoon. While the sensory issues may not go away, people can learn to deal with them better. Sometimes by exposing themselves to the sounds, smells or situations that bother them they can learn and develop coping mechanisms so that the situation isn’t as upsetting anymore. My first day of middle school I rubbed my arm or my legs the entire day.  When I graduated high school, I could not stop moving…graduations take hours. Before graduation I bought a bracelet that had charms on so that I had something to play with while I waited. The entire evening my foot did not stop moving while I was sitting. When I had to stand I was able to shake my wrist and play with the charms on the bracelet. Doing this helped me calm down. Every person is different; every person has their own way of calming themselves down. When it comes to someone with Asperger’s, if something like these ways do not work, then that person can or will shut down completely, when this happens, it is best to leave them alone and let them come to. Forcing someone out of shutting down can make things a lot worse.

All this sounds bad from a parent’s perspective and some are not happy that doctors have not found a definitive way that someone can get Asperger’s. Some people are born with Autism, while others may have developed it through other ways. When your child has Autism all you want to know is how to help them. There are some ways that can help keep kids or adults calm and make their lives easier. One of the things you can do at home would be to build a sensory area or room for your child. While this may be more useful for kids, it can also help adults. This could include a swing, soft couches or bean bags, soft lighting, or even a room with more insulation to help keep the noise out.

Another thing that is very important for a person with Aspergers is a set routine. It is important for the individual to know and to be able to predict what their morning; afternoon or day will be like. Knowing this information helps lesson anxiety. Anytime a routine or schedule is changed is important that a person with Autism know as soon as possible. Well, maybe not too soon. If you tell the person too soon it is all that they will be able to think about until it happens. If you tell a person too late they will not have had time to process the information and prepare themselves for the change. For instance, school fire drills or assemblies. These are usually unexpected changes to a student’s routine, even though they may be planned. However, if you talk with a student a day or two ahead of time, it gives them the time to prepare, ask questions, be okay with the change in their routine, and know what to expect.

An important thing to consider for school is an Individualized Education Program or IEP. This can help a child at school all the way through high school. It is, in its basic form, a plan to help a child succeed as best they can in school. It may include accommodations such as extra help, extended time on tests, someone to read a test to them, or allowing them to take a test in a different room. This plan is given to all of the student’s teachers and their principal. The most important thing you can do when it comes to school is to invite your child to attend their own IEP meeting. People with Autism need to know that they can, and should advocate for themselves. It is important to ask them what they think and what they want. My own mother did this for me. This helped me out so much that by the time I was in middle school I had asked for a computer assistant for class. By the time I hit high school I knew how to request that I switch out a class and did all the right steps by myself, even though I did not know I was doing it complete right. If your child, or if you are just finding out that you have Asperger’s just remember it is not the end of the world, it’s just a different experience. You can succeed in life; nothing is stopping you but you.


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