Feeling Full

With the upcoming holidays, this has been on my mind lately.

I have never been the type of person to overeat on Thanksgiving. I eat on Thanksgiving the same way that I eat every other day of the year. I eat until I’m just satisfied. I enjoy Thanksgiving and the food and everything, but I just can’t stand the feeling of being full.

I don’t like feeling like there’s food in my stomach. It is uncomfortable. On the other hand, I also hate feeling hungry… which means I pretty much have to eat all the time to make up for it.

In general I probably eat about 7 times a day. (I used to eat more often, but since I work for 8 hours a day I don’t generally eat more than once during that time, but on weekends I probably eat about 10 times a day.) I usually eat less than most people at regular meals and then eat snacks and mini meals throughout the rest of the day. Sometimes it seems like I hardly ever stop eating.

The most unhealthy part of not liking feeling full is that I have a hard time drinking much water. I can’t handle very much water in my stomach at one time. Water just gives me such an uncomfortable feeling, especially if I drink it on an empty stomach. And because I don’t drink much water I tend to have some problems because of that.

I think that may be one reason why people with autism may have more digestive problems than others. Water is just hard to handle sometimes. I’m working on getting better about drinking water though and I’m hoping it’ll help.

Back to Normal

Well, things are pretty much back to normal. My friend has been able to get some help so she’s hopefully not going to be homeless anymore, which has definitely helped calm my nerves a lot. And life has more or less returned to the way it was.

In thinking about returning to normal, it occurred to me how abnormal that can seem for most people. I think sometimes people think that having a disorder or being different means that your normal isn’t the same as other people’s normal- that life is an innately different experience because we see the world differently.

The truth is that my normal is probably about the same as your normal (assuming of course that you’re a bachelorette in your 20s). Our differences don’t really make us as different as we sometimes believe. The stage of our lives can lead to more differences than a disorder sometimes. However, the more time I spend with older people, the more I realize how much we have in common. The biggest differences between ourselves and others are the ones that we create by our own perception.

Now I’m not saying that we’re exactly the same or that people with autism are just like everyone else. What I am saying is that no one is like everyone else. We’re all different- autistic or not. We all have our own personalities and likes and dislikes. We all have things that get on our nerves and things that we could do over and over. We’re all just people and normal for me may not be the same as normal for you, but it is normal nonetheless.

And if you’re curious as to what my normal is, it is basically the best life ever. I go to work, spend time with my nieces and nephew, watch movies, hang out with friends, go to church, go shopping, pay bills, exercise sometimes, and pretty much just do whatever makes me happy. Life is an amazing journey and I only hope that your normal is as awesome as mine. 🙂

I need more time

One thing that is very hard for me to deal with is when people discount my feelings. I often get upset or annoyed at things that really don’t matter. I know that they don’t matter and I try not to get annoyed by them, but I do. Generally when this happens I am alone or can go somewhere where I can be alone. However, sometimes people notice when I get upset about something. This is where problems can arise for me.

I know that the things I get upset about are inconsequential and in general there is no reason to get upset about these things. They are things that are easily solved and have no bearing on the rest of my life. The problem is that I can’t control what I get upset at. It just happens. However, I do have some control over what I choose to do after I get upset. And what I do usually has a lot to do with what else happens surrounding the event.

When I am alone I can generally calm myself down. I can reason within myself about the validity of my reaction and think of an appropriate way to handle the situation. When I’m not alone the reaction of others to me getting annoyed or upset can sometimes interfere with me being able to immediately think things through and proceed to calm myself down.

When people discount my feelings by asking why I am getting upset at something so trivial or by telling me to calm down because whatever I’m upset at isn’t important, my feelings take over me. Instead of stepping back and analyzing the situation and allowing my reason to trump my emotional reaction, my emotions take control and carry me to a less ideal end. Instead of calming down and letting the situation go, I get more and more upset until I either outburst or find an escape.

I think my autism is probably most apparent in these times. I usually have the time to think about my reactions to things and can respond appropriately, but in these times I know I don’t respond appropriately. People say “use your words,” but how can you come up with words when the only thing inside you is pure emotion? How can you turn energy into sentences? Especially when you aren’t given the time you need to do that?

So, yes, I can use my words. But no, I probably can’t do it when you want me to. I need a little more time.

I need people

Since I didn’t do a normal post on Saturday, I decided to do an extra post this week.

I have been reading some posts lately from autistic introverts and I have been reflecting on whether I am an introvert or an extrovert. According to a questionnaire I took recently, I am an ambivert. However, I wonder if this is really the case or if I am an extrovert that needs to be introverted at times because of my autism. I wonder if I would be more of an extrovert if I didn’t have autism.

For much of my life, I considered myself to be shy. I had a hard time starting conversations and attributed that difficulty to shyness. When people would ask why I didn’t talk, I would say that I was shy. People understood that and didn’t really ask any further so it worked. It wasn’t until I started this blog and started thinking about autism and how it affects me that I realized that I am really not shy. In fact, I am quite the opposite of shy.

I love people. I love being around people. I love hearing people’s stories. I love talking with people and I love talking too. Sometimes I probably talk too much once I get going.

On the other hand, I can’t stand people sometimes. I don’t understand them and they frustrate me. I don’t like certain things about people and sometimes avoid them because of these things. I can’t handle the loudness of a crowd and I don’t know how to start conversations without someone looking directly at me and I don’t know how to get someone’s attention when they don’t notice me.

Most of these things though stem from my autism. Most of the reasons why I dislike people or dislike being around people are explained by autism. Without autism I would probably be a very sociable person.

When I see someone sitting alone, my first impulse is to start talking to them. Then I start thinking, how can I talk to them? How can I start a conversation with them and what would I say? I generally come up with an entire conversation that we would have and how it would turn out.

By the time I’m done with this process the opportunity to talk to someone has usually passed already. If it hasn’t passed, sometimes I just give up on trying to have the conversation because I can’t figure out what to say or the conversation I have had in my head doesn’t seem important or significant enough to interrupt the person.

I often wonder though how many people I would have talked to or how many friends I would have made if I was able to just have the conversations I want to have with people. I wonder how many opportunities have passed me by because I didn’t know how to say hi to someone or how to start a conversation with someone. And ultimately I wonder how much different of a person I would be if I didn’t have autism.

Would I be kind and understanding or would I be aloof and self-righteous? Would I be a friend to the friendless or would I have a circle of people I was comfortable with and not feel uncomfortable with excluding others? Would I try to see people in the best light or would I condemn anyone that was not like me? Would I be introspective and strive to understand myself and the world or would I be content to accept things as they are and not seek for greater knowledge? Would I be overly friendly and make some people uncomfortable? Who would I be without autism and would it be worth giving up who I am and who I have become?

The hardest part about being an autistic extrovert is not being able to fulfill my need to be around people. Although most people think of introverts as being shy and extroverts as being outgoing and friendly, the true definition of these terms comes from where you get your energy. Introverts gain energy from being alone. They need alone time to recuperate from being with people  and they are content to spend time with friends every once in a while. Extroverts, however, gain energy from being around others. Extroverts need to be around other people and lose energy when they are alone too often.

That is the predicament I often find myself in. I do not have the social skills I need to be around people as often as I need or would like to be around them. I wish I could call people up and ask them what they are doing and spend time with them. Unfortunately, I often don’t know how or I don’t want to bother someone because I don’t understand social cues and can’t tell whether someone actually enjoys being around me or not. I find myself losing energy from being alone and not having the social environment I need to thrive.

When this happens I generally resort to going online. Although the internet isn’t an ideal replacement for real life interaction, it keeps me going sometimes. My online interactions sometimes give me just enough energy to get through my more solitary days.

So, what’s it like being an autistic extrovert? In general, very lonely. But like everything with autism, you do the best you can because it’s all you have.

Sometimes you forget

The past few days have been incredibly hard for me. I don’t know if it’s because I haven’t been sleeping as well as I normally do, but I’ve been more emotional than usual over the past week or so. I’ve had a couple of meltdowns and a lot of times where I wanted to have a meltdown but was able to distract myself instead.

The thing is that sometimes you just forget how hard it is to have autism. You forget that you even have autism sometimes. When you’re able to live life in the same world as everyone else and do what other people do, sometimes you forget how hard some things are. You forget that what comes naturally to some may not come naturally to you. You forget that you may take things more personally than someone else. You forget how hard you have to try to say the right thing all the time.

Sometimes you forget how to act normal. You forget that normal people don’t think like you. You forget that what comes naturally to you seems strange or awkward to others. You forget that other people don’t understand you and that you don’t understand them.

You just forget how hard life is sometimes. And then… you get that reminder that you’re different and will never be “normal” and the world seems harsh again. Sometimes I want to just disappear to my own world where things make sense and people aren’t difficult to understand and I don’t feel inadequate all the time.

Sometimes I just wish that people could see what my normal is like. Maybe if other people lived in my normal world, they’d see how abnormal their world actually is.

This inspired me to write a poem which you can find on my other blog at http://underthesurfacepoetry.wordpress.com/2014/07/18/your-normal-world/

The Unexpected Busy

The last few weeks have been incredibly busy. Between my niece’s birth, a family reunion, and general craziness at work, I have been pretty overwhelmed. But the busyness itself isn’t what makes things overwhelming. It’s the unexpected busyness that really causes stress and anxiety.

I have heard people say that people with autism can’t handle busy schedules, but that isn’t necessarily true. We can handle busy schedules if we are prepared for them and expect them.

When I was in high school I was involved in nearly every extracurricular activity available. I participated in sports, in our school’s theater program as a stage technician, and in 10 or so clubs (4 of which I either founded or held a leadership position in). However, this busyness was generally not a challenge for me. I knew what I had to do to make everything work and I knew what to expect in each activity. The times that I became stressed during this period of my life was when something unexpected happened in addition to my regularly scheduled activities.

Staying busy can actually have a positive effect on me. It keeps me active and helps prevent me from becoming asocial or apathetic. It also helps me feel a sense of purpose and direction.

Things that come up unexpectedly though throw off my sense of direction. I feel like I’ve been knocked over by a strong wave in the ocean and am caught up in its current. Eventually I become free, but it leaves me exhausted and irritable.

In addition to unexpected things happening to me are the unexpected thoughts that come to me. Sometimes I feel myself flooded with thoughts that I don’t have time to organize and process. I wish that I could have more time to go through my thoughts and attempt to understand and make sense of them, but life doesn’t always work like that. Sometimes unexpected events and unexpected thoughts coincide with each other or one causes the other. This makes it especially difficult to function because my mind becomes crammed with all of the information I am taking in.

Luckily, these types of things usually don’t happen often and I can recover from unexpected busyness to return to my normal state of being. Unfortunately, I don’t always have the time to recover that I need which can sometimes lead to meltdowns. Meltdowns can speed the recovery process in terms of time but are definitely more energy consuming.

Although I don’t blame people for not understanding that I get overwhelmed and therefore more irritable when things don’t go according to plans, I do wish that people could see what I feel sometimes. I think that if people could understand the stress that some things cause, they would be less likely to judge and more likely to validate my feelings.

Fireworks

I have a love/ hate relationship with fireworks. I love watching fireworks, but I hate hearing them. I hate the sound they make when they go off. I hate the squealing sounds and booming sounds and crackling sounds. I hate that they are so loud. You can even hear fireworks sometimes when they’re miles away.

I can usually get by with wearing earplugs, but I really hate having to do that. Earplugs feel so invasive. They feel like putting elephants or knives in my ears, but that’s nothing in comparison to how fireworks make me feel.

When I hear fireworks, especially loud ones, I feel like I’m exploding inside. I feel pressure inside my rib cage like my insides are trying to squeeze through the bones. My eardrums feel like they’re pounding and ringing. And overall, my body feels tense and unstable.

This description is mostly how I feel about loud fireworks though. The more quiet fireworks are still uncomfortable, but they are much less pervasive. I can get by without earplugs when it’s only the more quiet fireworks. The loud fireworks though sometimes push me to the edge of my sanity.

Sometimes, I want to run outside and yell for everything to be quiet. I know it won’t do any good, but I can’t stand the feelings so I have to do something. Sometimes I just want to cover my ears and yell because I’d rather hear the sound of my own screams than hear the sound of fireworks. Sometimes I want to just curl up in a corner and rock and try to pretend that the world has disappeared around me.

However, everything I’ve said is dependent on how I feel. If I’m stressed or anxious, what I’ve said definitely is true. But if I’m calm and relaxed, the noise of fireworks seems to slide past my ears instead of going into them. It’s almost like I don’t even really hear them so they don’t bother me.

Because of this, fireworks on the Forth of July aren’t usually an issue for me. I expect them to happen and I’m usually watching them and I’ve usually had a good day before they go off. The fireworks that really get to me though are the ones people set off early. It’s the July Third fireworks that really become unbearable. They’re unexpected; I’m usually a little stressed or anxious about the next day, and I don’t usually go out and watch them.

I think watching the fireworks really helps with the noise because I just love how fireworks look. I love the colors and lights of fireworks. I love the way they follow patterns and make shapes. I love that they burst in beauty and then fade into darkness. I can connect with the way fireworks look.

But until I can find a way to enjoy fireworks without the noise, the days surrounding the Forth of July will always be tough for me.

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.

Happily Abnormal

The other day I was looking through some comments people had made on an autism website where they said that they would take away their child’s autism if they could. I was thinking about this and wondering just what that could mean for both the parents and the child.

The more I think about what is “normal” in society, the more I am glad that I am not normal. Even though the world is more accessible now than ever, normal is becoming more and more influenced by a select few. While most of us understand that people aren’t the way tv depicts them, we are still influenced by television and the media in what we see as normal. It is normal to want nice hair and a perfect body and the best clothes and fancy cars and big houses and parties with lots of beer and access to all the men or women we want.

Normal is wanting everything we don’t have and not being content with the things we do. Normal is not having time for your kids because making money is more important. Normal is being divorced or cheating on your spouse or having sex as a teenager. Normal is going to a 9-5 job and making just enough money to pay for your expenses while maxing out your credit cards on things you don’t need. Normal has ultimately come to be about stuff- not people.

Normal isn’t opening the door for someone. Normal isn’t giving to someone in need just because you enjoy doing it. Normal isn’t going out of your way to make someone feel included. Normal isn’t trying to make the world a better place- normal is trying to put yourself in a better place than the world.

And I’m not saying that the majority of people fit these descriptions, only that this is the perception of normal and sometimes even the goal of normalcy.

In this world where normal has come to mean exclusion and selfishness and elevation, I am so glad to be abnormal. If I didn’t have autism, if I hadn’t gone through depression, if I was born as the person I dreamed of being, would I be normal? Would I be petty and ungrateful and selfish?

This reminds me of a quote in Disney’s Hercules. Hercules says that when he was a kid he wanted to be just like everyone else. Then Meg responds, “You wanted to be petty and dishonest?” It’s interesting that we all want to be so normal, but we don’t really think about what normal can mean.

I’ll admit that I still am selfish and ungrateful at times and I am definitely not free of flaws, but my differences have humbled me. I have a feeling that if I didn’t have the problems I do, I wouldn’t see those with problems. I have a feeling that I would care only for myself and seek to give myself the best position in life.

No, it’s not easy to have autism. No, it’s not easy to go through life different and lonely. No, it’s not easy to not be normal. But… do I really want to give up the gift I’ve been given to live a life of ease? Do I want to give up my perspective so that I wouldn’t have to try as hard? No, I do not.

Having autism isn’t easy. Being different isn’t easy. Not being able to make friends or even talk to some of the friends I have isn’t easy. But I would not give up autism for the easiness. I would not give up my compassion for the easiness. I would not give up being who I am for the easiness.

Autism isn’t easy, but it is worth it. If only for the comfort of knowing we are different, it is worth it. And as the world grows more and more materialistic and misogynistic and selfish, it becomes more and more worth it.

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