Wait… Flapping is Normal?

The other day my friend flapped. It was totally in public and totally natural and completely wonderful. I have no idea if she has autism. I sort of doubt it because she doesn’t seem to have any problems with socializing, but you never know.

The coolest part about this whole thing is that no one stared. At least not in a judgemental, that was weird kind of way. If anyone looked, it was simply to see why she was so excited.

And I just keep thinking, is that how it could really be?

Could flapping really be totally normal? Have I really been over thinking all this that much? Is it really that easy to just be yourself?

I don’t know. I really don’t know. But a part of me really hopes that this is not too good to be true. A part of me really hopes that I can one day get to that point. Until then, I am grateful for the hope that experiences like this give me.

For background on this post, read my latest post about flapping here.

Allowing Myself to be Autistic

I don’t flap.

At least that’s what I’ve told myself for 20 or so years. (For those of you who don’t know what flapping is, it’s basically waving your hands quickly in up and down motions- often out of excitement and sometimes accompanied with jumping up and down.)

Until recently I believed that flapping was not normal. It simply was not something a person did if they were capable of living a normal life. Now, before you get upset or call me insensitive, try seeing it from my perspective.

The majority of my life has been dedicated to figuring out what is seen as normal so that I can blend in and maybe eventually be accepted. Anything that the majority of individuals don’t do in public is abnormal. And I try to avoid anything in that category.

So I have never flapped in public. (Public being a loose term that to me means any human being in the area or that could potentially see me.) Meaning essentially that I used to never flap because I shared a room or an apartment and there was always the possibility of someone seeing.

Well, after about 20 years, I can happily say I flap. In fact, I flap so much I almost worry that one day I’ll do it in public. But maybe by the time that happens I’ll be okay with being autistic and I won’t mind allowing myself to show that side of me to others.

He flapped

So far I am the only one in my family and extended family that has been diagnosed with autism. We sometimes speculate if a couple other family members have autism, but nothing has ever come of that. So basically… I’m all alone when it comes to trying to figure out what autism means and how to deal with it. I know my parents tried to learn about autism when I was younger so they could help me out more, but learning about it when you have autism is completely different than learning about it when you don’t.

When you learn about autism and don’t have it, you’re seeking understanding and perspective. When you’re learning about autism and do have it, you’re seeking to understand yourself, but you’re also seeking for validation. The quest to learn about autism isn’t just for understanding- it’s to figure out if you really are as alone as you feel.

I decided to learn about autism because I wanted to be proven wrong. I wanted to learn if I really was broken or if I am just different. And the more I have learned about autism, the more I have realized that I’m not as broken as I used to think I was. I’ve learned that autism isn’t something I should be ashamed of. I’ve learned that autism makes me different- not less.

One of my biggest questions since starting this journey of learning about autism is how much of me is different because of autism. What are things that people with autism do that people without autism never do? Or is it simply that we do the same behavior only we vary on whether we do it longer or more often?

Anyway, the reason for this post is that I finally had some sort of answer to one of these questions. I have often wondered, do people without autism ever flap or ever want to flap? I still don’t know the answer to this question, but… the other day my nephew flapped.

It was only for a split second. But… he flapped…

And my heart stopped for that split second… not because I was worried that he could have autism, but because I was finally not so alone.

I don’t know what it means that he flapped. I don’t know if that means that it’s normal for little kids to flap or if that means he has a little bit of autism. But for now it just means that I’m not so broken.

Happiness released

If you saw me when I’m by myself, you would be surprised at how different I am than when I am with you.

I know this is true for lots of people, but for me it mostly applies to my autism. It is only when I am alone that I realize how naturally autistic tendencies come to me. I jump; I flap; I don’t hold myself back. I never flap when I’m around other people. My family has never even seen me do it. It feels wrong and strange to do it in front of others, but by myself it happens completely naturally. I often wonder to myself, “what is this uninhibited feeling of joy that is coming out of me?” “Why don’t I feel this when I’m around other people?”

I almost wish I could show you who I am when I’m by myself.

I wish people could see that happiness. I wish I could share that happiness with others. The problem is that other people wouldn’t understand it. Has anyone that is not autistic felt so incredibly happy for no real reason that they have to run and jump and cheer?

I wish you knew that feeling. I wish your happiness was released and I wish I could release mine around you. But for now, I’ll just release my happiness when I am alone.

The Act of Normal

I’ve been reading a lot of posts lately about people saying that they’ve been told that they couldn’t have autism because they seemed too normal or well-adapted. I’ve been thinking about this in regards to my life. I’ve had lots of people tell me that they never would have guessed that I have autism. My response to this is usually something along the lines of I’m glad that my act is working.

I try very hard to appear normal. I think this is partly because I want people to see that people with autism aren’t all that different from themselves and partly because I’d rather keep my autistic side hidden away in a place only I can see and experience. Autism is like my hidden secret, my hidden world. It’s like when you want to keep all the chocolates to yourself so you hide them under the bed and only savor them when you know that no one else will know about it. I love my autism and doing autistic things because it’s natural. It’s freedom. And I don’t want that freedom changed by the world so I keep it to myself.

Now this may seem somewhat contradicting, but I am actually very open about my autism. It’s hard to be on my facebook and not see that I have autism. And I’ll tell people I have autism if the topic comes up. The secret hidden things though are the actual autistic behaviors that I exhibit.

Talking about them, such as on this blog, makes them almost less real and more like abstract concepts that we try to analyze and understand. However, seeing them makes them real and tangible and they become a problem to those around me. That’s why I try so hard to make my autism as abstract and distant as possible. The more distant my autism seems, the less people see my autism as a problem and the more autistic I can actually stay.

Hiding my most autistic traits is something that comes automatically to me. No one, not even my family, has seen my hands flap. No one has seen me so uncomfortable that I want to wriggle out of my body. People have seen me twist my hands or scratch myself or shift in my chair and a couple times certain people have seen me cry, but in general people have only seen what I deemed appropriate for them to see. They’ve seen what I felt was ok for them to see based on our relationship and their therapeutic role or work position.

Even if I were to try to show my hidden autistic traits to someone, it would be impossible to do so. I literally cannot do certain things in front of people. My body just wouldn’t allow itself to. Instead, I do the socially appropriate things and deal with the uncomfortableness of holding things in until I can be alone and get things out.

When I am alone, I can be whoever I want to be without worrying about whether it is the “right” thing to do or not. By hiding my autism from those who might try to squash it, I preserve the beauty of it. I love jumping for joy when I’m alone or smiling so much that I feel like my happiness will burst out of me or flapping my arms because I’m excited or simply glorying in the textures of the world around me. I even pretend sometimes to have conversations with people that I could never have in real life. I can work out my frustrations easily because there are no pressures to work them out in the way other people want me to.

And so, the act is not only to try to reduce stereotypes, but also to preserve the beauty that I see my autism to be.

So when someone says, “you seem so normal” or “I never would have guessed” or “wow, I’m surprised”, I secretly cheer inside because my act is working.

Self-Injurious Behavior

I attended an autism conference online this past weekend. In the conference they addressed screenings and diagnosis, video modeling, behavioral treatment, education, medications, and co-morbid conditions.  My next couple posts will probably be dedicated to addressing some of the thoughts that came to me as I watched this conference.

In the discussion of co-morbid conditions and medication, self-injurious behavior came up. Although some of the reasons why people with autism self injure were addressed, the reasoning behind the reasons wasn’t really explained so I thought I’d explain my side of it a little bit.

First off, I should say that although I have participated in self-injurious behaviors, I have never done anything that would actually cause harm in any way. Also, the behavior I’m talking about is limited to behavior related to autism. I am not talking about self injury related to depression or other related psychological disorders.

My self-injurious behavior consisted of scratching my arms and head, putting pressure on my arms or hands, and twisting my hands. Generally these behaviors are specific to certain situations. The most common situation for me to use self-injurious behaviors is a social situation or a situation where I need to stay in a certain spot for a long period of time. Generally in these situations it is pretty easy to scratch my arms or twist my hands without it being too distracting for other people. If it is a more formal situation, I tend to grip my wrists and apply pressure instead.

In general, I only use self-injurious behavior when I feel uncomfortable. Sometimes I feel uncomfortable because I am in pain, or because I feel trapped, or because I’m not sure how to handle something. The point of using this behavior isn’t pain so much as it is distraction. If I apply some sort of physical stimulus, I can forget about whatever is making me uncomfortable. Also, when I am already in pain, it distracts me from that pain or helps me feel like I am relieving that pain in a way.

From my perspective, my behavior is not a problem, but rather a coping skill. It allows me to deal with more distressing problems. It allows me to distract myself from something that is uncomfortable and focus on something familiar and distinct. I’m able to transfer those uncomfortable feelings inside of me into comfortable feelings outside of me.

It wasn’t until I was older that I realized that I did certain self-injurious behavior because I was suffering from GERD. I realized that I was in pain, but I thought that that pain was caused by being uncomfortable in a social situation rather than from a medical problem. I was used to pain from my surroundings so I didn’t realize that it meant something could be wrong. For me, people touching me or sounds could induce feelings of pain so I considered these situations to be similar to those.

I have also used self-injurious behavior to try to reduce pain. For example, sometimes I would feel that my brain was too big for my skull and I would scratch my head to try to relieve some of the pressure I felt. Although it didn’t work like I imagined, it seemed to me to help somewhat.

Due to these experiences, I think that checking for a source of pain should be the first step in trying to deal with self-injurious behavior. After that, consider whether the behavior is really harmful or not. If it just looks strange or socially unacceptable, it might not be worth getting rid of. If anything, I would suggest adapting it to something less harmful/ noticeable rather than trying to get rid of it altogether. It could be one of the few coping mechanisms someone has.

Remember that we don’t have to be like everyone else. We don’t have to conform to society’s norms. People with autism are different, and the more we accept those differences, the easier it will be to accept ourselves.

 

If you would like to view a more comprehensive list of reasons for self-injurious behavior, visit http://www.autism.com/symptoms_self-injury

Drawing

I went to an art exhibit this past week that had paintings of Jesus Christ. One painting showed Christ drawing on the ground with his finger when the woman caught in adultery was brought before him. I was intrigued by this painting because drawing with my fingers is something I do often and could be considered stimulatory behavior. I wrote about stim in another post and how it can be used to focus thoughts and emotions. Stim can also be used to help block out what is happening around us. I wonder if Christ wrote on the ground because it helped him block out the heat, pressure and demands of the crowd around him. In this time of expectation and desire for condemnation, I’m sure Christ needed a way to focus on what was right despite the noise around him.

Drawing has been one of the most effective ways for me to deal with the world. When I do not have a pencil and paper handy, I often draw with my fingers. Throughout school I drew in nearly every class. I would draw on the sides of my binder and even sometimes on the back of tests. Drawing was a way for me to concentrate and block out the noise and sensory input of the rest of the world. I enjoy tracing out patterns on clothing and furniture. I often feel a sense of peace as I focus on my drawings.

My drawings do not always have meanings and I often simply draw lines in checkered or spiraled patterns. The drawing itself isn’t as important as the attention given to the drawing. These drawings are meant to focus your attention away from uncomfortable feelings and toward peaceful ones.

Although I am by no means suggesting that Christ had autism, I believe that this Biblical story can teach us something about autism and about focusing our thoughts. In times of stress we are given ways to draw ourselves into a sphere of quiet contemplation and I believe that drawing is one gift that can help us do that.

Bursting Through the Seams

Have you ever felt like there is something so powerful inside of you that you can’t really express it and there’s no way to get it out so it just kind of lives inside of you? It’s kind of like when you need to cry so much that once you start you can’t stop for a while, only you’re in public so you have to hold it all in. If you can think of that feeling, that is sort of how I feel sometimes only not just with sadness but with lots of thoughts and emotions.

I think a lot of people with autism may feel the same sort of thing, which is why some of us seem really blunt at times. Sometimes there are just so many feelings and thoughts going through us that we just put them out there without realizing that we may need to rephrase them for people to not take it the wrong way. Even if we do stop to formulate our words, we may run out of time and then it can become even more offensive because of how or when we say things.

Sensitivity may also be contributed to by these overwhelming feelings and emotions. When you have something so strong on the inside, everything on the outside seems harsher. A gentle touch can feel like a heavy weight. A brush past you can feel like pins and needles. Sounds can seem deafening. Because your insides are in turmoil, everything on the outside seems hostile and overwhelming as well.

Getting these feelings out brings us back to stereotyped motions. We often use the outside to distract us from the inside. We stimulate our senses to remind us of what is real and to help us feel grounded outside of the powerful forces inside of us.

Another thing that I think has helped me to get out some of these thoughts and feelings is being involved in things. In high school I was involved in nearly every extracurricular activity offered at the school. I was in water polo, I started my own club, I was in the leadership of at least 3 other clubs, and I participated in another 5-6 clubs. Although this may seem like a lot to handle, it actually felt like less to handle because the inner turmoil was dissipated into everything else I was doing. I didn’t feel uncomfortable because I never had the time to be uncomfortable. I never had the time to let my feelings and senses affect me and because of this the feelings basically went away. I’m not saying this is for everyone and I think that this may be a very individualized solution, but I just want to put out a small reflection of why it is so hard to live with autism.

When your insides are not reflected by your outsides (you seem fine, but you’re at war within yourself), it is hard to express those feelings to others and possibly harder to try to figure them out and control them. When you think about these overwhelming feelings, it’s no wonder why people with autism have such a hard time communicating. When your thoughts and feelings are too powerful for words, how can you use words to describe them? And when you have things inside of you that are that powerful, how can you concentrate on anything else?

Obsessions

One of the criteria for diagnosing autism is adherence to repetitive behavior. One form of this is the development of obsessions. The UK site for autism says that obsessions can help people by providing “structure, order and predictability, and help people cope with the uncertainties of daily life.”

Although I’ve never thought of myself as having obsessions, there are certain things that I could do all the time if left to my own devices. My obsessions have never really been a problem because I have always kept busy with a lot of things to do so I don’t have much time to put into obsessions. However, over the years I have held onto a few things that are really important to me. My obsessions include coin collecting, rocks, and prices. In order to explain obsessions in general, I will explain my obsessions in order to show the variety and extent of different types of obsessions.

Whenever I get a coin, I have to check to see if it is a “special coin.” I have all of the state quarters, several dollar coins, all of the different nickels, an assortment of foreign coins, and a variety of other coins with different pictures or from different years. I believe that this obsession grew when I was in grade school because a kid in my class brought a special coin for show and tell. Ever since then I have collected any special coin I could find and added it to my collection.

My obsession with rocks is a little different than my coin collecting. But they sort of go hand in hand. I joke with my brother that I’m obsessed with shiny things which is why I collect coins and rocks. My favorite rocks are indeed the shiny rocks, but I also like the different colored rocks and the smoothness of rocks.

I believe that my rock obsession came somewhat from a rock lesson we had in grade school, but also simply because I like the variety of rocks. Rocks are sharp and smooth, gray and colorful, clear and opaque. There are so many different types of rocks and each one has its own uniqueness.

At first my obsession with rocks consisted of me trying to collect every type of rock I could find. I remember going to Lake Tahoe for a family vacation and filling all 6 of my cargo pants’ pockets with rocks. My mom came to me and told me that I could only take a few rocks home. After reasoning with her for a bit, she allowed me to pick out 10 rocks. However, I reasoned that since she wasn’t specific I could take 10 for each pocket. I still have many of those rocks in a vase in my room. Since then though, I have discovered that rocks are more beautiful in their natural setting. I still sometimes collect rocks, but I mostly just play with them now. When I am around a place with lots of rocks I like to look at them, feel them, use them and arrange them.

The obsession that is most pervasive for me is that of prices. I am obsessed with prices to the point that I can get frustrated if I am unable to see the price of something. I feel the need to know the lowest price of something at all times, even if it’s not something I will be buying any time soon. I love finding the gas station with the cheapest price and I analyze the flow of gas prices and the difference between different cities or areas.

I also like looking through grocery store ads and comparing prices of all the store ads I have. I can generally tell you off the top of my head the cheapest prices for common grocery items and the time of year that they are cheapest. Although this obsession is sometimes a very good skill, it can get me into trouble because I want to buy items when I know they are the cheapest. Even though I may not have the money to spend or I could spend the money more wisely somewhere else, I enjoy buying things when they are on sale simply for the sake of looking at the receipt and comparing the prices to future and past sales of the item. I believe my obsession with prices stems from my parents’ attempts to save money by finding the cheapest items and looking for the best prices in the area.

To return to the point I am trying to make, obsessions can come in a variety of ways and for many different reasons. As long as obsessions are controlled so that they don’t negatively influence the person’s life, they are fun and make life interesting. Obsessions are also useful in helping us to understand and relate to the world around us. They allow us to connect to people that have similar interests and give us something to talk about when we don’t know what else to say. In general, obsessions can be useful tools for someone with autism as long as they are don’t interfere with every day necessities.

Stim

I started this blog because I watched a youtube video about a girl that described some of her behavior through typing on a computer. A little over 2 years later, I was again led to a video about this same girl. I posted a link to the video at the bottom of this post.

Stim is short for self-stimulatory behavior. According to this girl, stim is output to reduce input. Like twirling your hair or tapping your pencil or biting your nails. We do it to help handle sensory input and to cope with emotions. About.com says that it is used to help manage negative emotions, but I’ve found that I use it to handle overwhelmingly positive emotions as well. Although these may also be considered negative in context because I usually use stim when the positive emotions are not normal or socially acceptable.

For example, I have times when I am so happy that I want to jump for joy. However, when you’re working a night shift and a jump could possibly wake people up, flapping your hands is much quieter, although less socially acceptable if people were around. Another example is with laughing. I sometimes tap or run my nails over something when I have the urge to laugh at an inappropriate time. I also do these things when I’m stressed, hungry, uncomfortable, anxious, and a variety of other emotions.

Some other ways that I personally show self-stimulatory behavior are playing with my fingers or nails, twisting my hands, shifting in my chair, or playing with objects that I have access to. Most of the stim behavior that I use is pretty socially acceptable because I’ve learned to keep the socially unacceptable stim to when I’m alone where no one else can see it. I can tell when people consider some of my hand twisting or chair shifting as abnormal and I usually try to walk around for a bit in these cases.

In general, most stim can be controlled to socially acceptable forms. However, not being able to have any self-stimulatory behavior would make me and probably other people with autism go crazy. It’s just too hard to keep all those uncomfortable emotions and feelings inside of yourself. It’s like a coping mechanism that makes the world a place we can handle a little better.

Sources:

http://autism.about.com/od/autismterms/f/stimming.htm