My Story- The Other Side of Autism

In my last post, I described the social situations that led up to my autism diagnosis. This post will focus more on sensory differences, repetitive movements, and restricted interests.

“That’s not normal.” “Normal people don’t do that.” “Don’t be seen.” “Stop.” “Someone is looking.” “Disappear.” “Be like them.”

These thoughts and more, have flooded my mind over and over again for as long as I can remember. I have forced myself to fit in, stopped myself from doing things that seem strange to others, and carefully analyzed the world for signs of acceptance.

I feel like I don’t know myself. I don’t know what I like to do or what makes me happy. It hasn’t mattered up until this point. It wasn’t about me; it was about everyone else. Flapping is not acceptable; having a meltdown is not acceptable; refusing to try new things is not acceptable; reacting to loud noises is not acceptable; escaping uncomfortable situations is not acceptable; enjoying or seeking out certain sensory experiences is not acceptable. Acceptable- that has been the thorn of my existence, triggering the ultimate thought, “I am not acceptable.”

How did it come to this? How did I get to the point where I was afraid to do anything for fear of doing something wrong? How did I become so scared of being different that I felt like it would be better for everyone if I wasn’t alive at all? How did autism collide with depression and suicidal thoughts, resulting in fear, hiding, cowering behind a cover of normalcy?

Things have gotten better. Fear isn’t as strong as it once was. Suicidal thoughts aren’t as prevalent. But, I have yet to accept my differences.

There are so many groups, websites, and people promoting autism acceptance. They say to be yourself, to flap, to sensory stimulate, to do what comes naturally. I don’t believe it. As much as I try to believe that autism acceptance is possible, my rational brain rejects the idea. How could people possibly accept what they have told me for so long to hide? I am not strong enough to endure the criticism of allowing myself to appear autistic.

I have not done what I could have or possibly should have done to promote this blog. I convince myself that it is because I simply don’t have the time, but the truth is that a large, well-known blog attracts controversy. People will do anything they can to destroy any hope that threatens their perception of perfection. I have experienced this in my life and it has brought me into hiding. I hide my sensory, behavioral, kinetic differences in order to preserve them from being attacked, to preserve me from letting them die.

So I do not flap in public, but I flap openly in my room. I am also starting to do so more at work and church and school when I happen to find myself alone and the chances of being seen are relatively low. I do not rock in public, but I find a quiet, solitary place to release and calm down. I do not chew on pens or furiously scratch ink onto notebooks; instead I calmly draw little pictures, take pens apart and reassemble them, and silently trace little designs with my fingers. I do not twist my hands or do complex body movements to relieve tension; instead I crack my fingers, stretch, shift in my chair, and attempt to distract myself.

Is there such a thing as being free or is freedom learning to live within the structural, social, cultural, religious, and legal constructs of the world? I don’t know if this is freedom, coping, or hiding. I don’t know if this is ideal, disheartening, or simply necessary. I don’t know if it makes me happy or sad, frustrated or satisfied, anxious or relieved. I do know that it’s not likely to change soon.

I am not likely to suddenly start flapping in public or allowing my textural interests to show or talking about my specific topical interests for more than a few seconds or allowing my body to do complex twisting movements. I am not likely to allow myself to show that I am autistic. But, the thoughts of hiding my differences and forcing normalcy are becoming kinder. I am becoming kinder with myself, more understanding of my weaknesses, and more accepting of my sensory needs outside of the public view.

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Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!

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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