My sense of hearing

I was talking to a coworker the other day that wears hearing aids. She had just had her hearing aids adjusted and said that sounds were too amplified and were hurting her so she was going to get them adjusted. I told her that my hearing is pretty much always like that. I have very sensitive hearing and little sounds can seem extremely loud.

Things like the ticking of a watch, the sound of electronics humming, and the padding of someone’s steps can be debilitating at times. I can’t fall asleep with a watch on or next to the bed because the ticking is too loud. I have been known to take batteries out of clocks because I can’t tolerate their ticking. And that high pitched sound you sometimes hear from the sound waves of electronics is all too well known to me.

On the other hand, sometimes I can’t hear well at all. My ears produce too much wax sometimes and it becomes hard to hear certain sounds. When this happens I have a hard time hearing people over the phone or understanding what people say in person.

Sometimes I can even have super sensitive hearing and not be able to hear other things at the same time.

I really don’t know what triggers any of these times. They just kind of happen.

The hardest part of all this is trying to filter the sounds that come in. When things are too loud, I try to focus on something to try to filter out the excess sounds. When I can’t understand someone because I can’t hear them very well, I try to focus on what they’re saying and filter out the background noises.

For the most part, I do pretty well with dealing with sounds. Sometimes it is harder than others, but I do my best to remain calm and ignore the sounds that are overstimulating. It just gets harder when other things add to the stress of sounds.

The Reality of Pain

I may not register pain in the same way other people do because I do not know what it is like to NOT be in pain.

My life has been filled with pain and so I sometimes don’t really realize when I am in pain or why I am in pain. I experience pain from sounds, sights, emotions, stress, touch. Normal everyday life constantly causes me pain. Sometimes it is bearable and sometimes it is unbearable, but it is always there.

So when people say that people with autism don’t experience pain or don’t register pain, I cringe inside. When life is pain, how could you not experience pain? The thing is though, when life is pain, how do you know the difference between the pain of sensory disturbance and pain that signifies a medical condition? How do you know when the pain is preventable and when it’s not? How do you know that pain is a sign that something is wrong when your body is constantly telling you that the world is wrong?

To me, there are many different types of pain and sometimes one pain can masquerade as another pain. Sometimes I feel a tingling pain like when your foot falls asleep, only it happens when someone touches me. Sometimes I feel stabbing or throbbing pain when I hear a loud or prolonged noise. Sometimes I feel a dull ache when I’ve been in the same room for too long. Sometimes I feel a choking pain like the gripping pain of frostbite when I see someone else hurting or lonely.

All of these types of pains are normal to me. I feel them nearly every day. However, they can also signify that something is wrong. They can be signs of a medical condition or a danger in the environment. The problem is telling the difference. The problem is knowing when your normal pains aren’t normal.

So before you think that someone won’t be able to feel pain because they self injure or because they don’t seem to respond to pain, maybe think about some other reasons they may not seem to feel pain. Lack of emotion to pain doesn’t necessarily mean that the pain isn’t felt. It just may not be fully understood.

Breaking down

This week has been hard. It has been harder to keep myself calm and in a good state of mind. Sometimes I have to stop myself from yelling at people or being brutally honest. Sometimes I have to calm myself down so I don’t run to my room and cover my ears to try to escape the world. Sometimes I have to remind myself that people aren’t doing certain things to annoy me, they just don’t understand that having things a certain way helps me get through life more smoothly.

I have had family visiting so this is part of what makes things hard, but I have also been more irritable lately and more depressed and lethargic than usual.

My last post was about being an extrovert and needing to spend time with people. Now I must clarify though. I love spending time with people, but I generally hate spending time around people. What is the difference? The difference is when you spend time with people you’re a participant, you’re a partner in an experience, but when you spend time around people you’re all individuals, separate and in all reality, alone.

Although I generally don’t mind being alone, I hate being around people and being alone. I hate when there are people you know around you, but they’re all so distant from you- like when a seal swims next to the glass of the aquarium as you watch it, you are so close and yet you are so incredibly far away.

Seal

These are the times when people most aggravate me. When they are so close and yet, it is like they are in a completely different world.

Because of this, my roommates and family have born the brunt of my incompatibility with people. I often get annoyed with people because I see them do certain things around me and I want to tell them to do it differently, but I know that it isn’t kind to correct people when they’re doing something differently than you would.

So this is why I have been wanting to break down lately. Because I feel isolated in a world that won’t leave me alone. I feel segregated even though I’m with people who I connect to more than almost anyone else. And I just haven’t been in the right mindset lately to be able to handle that. I have already been fighting the darkness, and fighting the darkness while feeling like an alien makes you want to break down.

Reasons I can’t sleep

Studies have shown a correlation indicating that children with autism often sleep less than their peers. “Sleep monitoring studies have confirmed these reports, showing that children with autism take longer to fall asleep, are awake for longer in the middle of the night, and sleep for shorter periods than typically developing children do.” Although some people have speculated reasons for this, I will attempt to explain some of these reasons and give some of my own.

Some reasons I have realized for why I can’t sleep are that I’m thinking too much, that the environment is not conducive to sleeping for me, or that I haven’t followed my nighttime routine.

Nighttime is the ideal time for thinking. During the day, the world is too loud and crazy to think. Sometimes I can retreat to my room during the day to think, but it’s not the same as thinking at night. There is something about lying in bed in the dark and knowing that you don’t have any requirements for the next 8 or so hours. It’s finally a time away from people and loudness and brightness. It’s a time where you can think about things you haven’t had time to process during the day and to get things done so you don’t have to worry about them later.

However, this time of thinking can also be a negative thing. Because the world is so quiet around you, the thoughts of inadequacy, failure, and uncertainty flood your mind. You may go through the entire day in your head contemplating over whether you were understood the way you intended or if you unintentionally offended someone or if you lost a potential friend because you said one thing and not another. You may be frustrated by things you didn’t handle the best way possible or you may come up with new ways to handle a situation that happened earlier in the day or come up with the perfect response to a question you weren’t able to answer the way you wanted.

If you’re not thinking about things, or if you’re done with thinking, you may still not be able to sleep because there are things around you keeping you awake. It can be the feel of your blankets or the unending ticking of a clock or the sound of crickets or the sound of someone breathing in another room or that the room isn’t dark enough or the room is too dark or things are too silent or a number of other things that make the room uncomfortable and sometimes unbearable.

If it’s not something in the environment that’s causing uncomfortableness, a medical problem could also cause sleeping problems. This could include suffering from indigestion or anxiety or some type of pain or sickness. If you can’t breathe right, it may be hard to be able to fall asleep. Or if your heart is beating quickly or you feel restless, it’s hard to relax enough to fall asleep. And you may not even be aware that you’re suffering from indigestion and may think that you’re just uncomfortable.

In addition to things that keep you awake, there may also be things that keep you from sleeping. For example, if you always follow the same bedtime routine but skip a step one night, you may not be able to fall asleep until you complete that step. I tend to go on the computer before I go to bed, and then brush my teeth, change into my pajamas, and then I read scriptures and pray and then turn off the lights and go to sleep. If I forget to read one night, I usually can’t fall asleep until I turn the light back on and read. Or if I forget to brush my teeth, I may lay in bed for hours feeling like something is off but I don’t remember what it is.

Once I finally do fall asleep, I may wake up during the night and have more problems with trying to fall asleep again. If I woke up because of a dream or nightmare, I may need to think about and process the dream before I can go back to sleep. If I got up to use the bathroom, by the time I come back I may not feel tired anymore or may need to re-relax myself in order to fall back asleep. If I wake up because of a sound, I may not be able to go back to sleep until the sound stops and even when it stops I may be too awake to go back to sleep. Sometimes I will also just wake up naturally and feel like I’ve slept long enough when I have only slept for about 4 hours or so. Sometimes I wake up because I’m too hot or my pillow is too thick, which can also cause me to toss and turn quite a bit in my sleep.

Although I sleep better now than I did when I was younger, I still have problems sleeping sometimes. One thing that helps me sleep better are the blankets I sleep with. I have a soft blanket and two comforters that I sleep with. Depending on how I’m feeling I switch which blanket is on the bottom or how many of the blankets I sleep with. When I’ve had a rough day, I tend to like the soft blanket on the bottom because it helps relax me. The other blankets are usually just for added weight, but can be cooler than my soft blanket so I sleep with them closest to me occasionally as well. One day when I have the money to spend I may also get a pillow that I can sleep on my back and on my side with, which would probably help even more with how well I sleep.

Another thing that helps me sleep is taking some time before I have to go to sleep to calm down and relax from the day. I usually go on the computer for a while and I read before I go to bed. This doesn’t always stop the excessive thinking in bed, but it usually helps with the anxiety like symptoms. I also sometimes sing a well-known and happy song to myself when I’m trying to go to sleep and this helps me relax and fall asleep. I always try to keep my thoughts positive before bedtime to help prevent nightmares or unrestful sleep.

 

I hope this post helped you understand a little about why it may be hard for someone with autism to sleep. There are other reasons that we can’t sleep sometimes (like that we just don’t want to sleep for various reasons) but the ones I’ve said are some of the more psychological and controllable reasons. If you’d like to look at more reasons why people with autism may have a hard time sleeping, you can check out this site.

Hopefully this post gave you some ideas about how to sleep better or how to help your child sleep better. If you have any other questions, I’d be happy to answer them. 🙂

 

**I apologize for the use of pronouns in this post. When I say “you”, I usually really mean me and other people who may share the same thoughts as me. It’s just hard for me to know how to express that without making it seem like I’m only talking about myself or complaining about my specific issues. I want my posts to be able to be applied to many situations while still acknowledging that we’re all different and may not share the same problems, but sometimes I struggle with knowing how to do that. Thanks for your understanding.**

Simple

I have often said that I am a simple person. Some people may disagree with that statement, but I feel it to be the core of who I am. I may sometimes seem complicated or hard to understand, but the reasons behind my actions are usually incredibly simple. I don’t know if my simpleness stems from autism or simply from my personality, but I guess you can decide what you think about it.

So, how am I simple?

1. I have simple pleasures.

  • I like soft things. I like the feel of a fluffy blanket after a rough day. I like hugging a teddy bear or a pillow. I like running my fingers through the soft fibers of things around me.
  • I like food (most of the time). I like the feeling of chewing. I like the sensations of sweetness and crunchiness. I like the smell of my favorite meals or the ripeness of a beautiful fruit.
  • I like beautiful things. I like watching the sunset or picking shapes out of clouds or examining the flight path of a bird. I like seeing the budding of a flower or noticing the patterns in my skin.
  • I like being alive. I like the feeling of relaxing and breathing deeply. I like hearing the beating of my heart or feeling the flow of blood in my veins. I like feeling the movement of my legs pumping as I run or the bounce in my stride when I walk.

2. I’m not really a deep person. I just see things in the world around me that others may not notice.

  • I notice the beauty of nature and comment on how it reminds me that God is the greatest artist to ever live.
  • I notice connections between shapes and patterns and facts of life.
  • I understand the pain and the hurt and emotions of others because I recognize them from having those feelings myself.

3. I’m straightforward and simple in how I say things.

  • I write my insights in a simple way and my poetry is straightforward and easy to understand.
  • I’m not good at being abstract and I tend to answer questions directly rather than jumping around the topic.
  • I’m not good at telling white lies and generally tell people what I really think when they ask me something.

4. I simply express my emotions.

  • When I’m sad, I don’t pretend to be happy. I may not want people to know I’m sad but I don’t pretend to be something I’m not.
  • When I’m frustrated, it’s pretty obvious that I’m having a rough time.
  • When I’m happy, I can’t help smiling and laughing.

5. I’m still a kid at heart.

  • I still like to play and have fun.
  • I like listening and singing to children’s songs and and watching animated movies.
  • I like spending time with my family and friends as often as possible.

 

I don’t know if me being simple is a good thing or not, but I like being simple. I think I’m a pretty easy person to read and I wish I could read others more easily so I could understand them better. Maybe if we were all simple people we could understand each other more and be more accepting of differences. I think sometimes people may get frustrated with my straightforwardness or that I show my frustrations with meaningless things, but it’s who I am and I wouldn’t change it for the world.

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.

Nutrition

I know I don’t need to explain the value of proper nutrition, but I am going to explain a little about how nutrition affects me and possibly others with autism. First off, though it may not need to be said, it is important to note that what we eat affects all of us whether we have autism or not. Studies have shown that lack of proper nutrition can increase our irritability, decrease our sociability, and decrease our self-control. For someone with autism, these effects can be even more noticeable than in others.

I know that for me eating often, as well as what I eat and how much I eat, greatly affects my attitude and behavior. When I haven’t eaten for a while, I tend to become irritable and pessimistic. It is almost like a switch goes off in my head. When I am am satisfied and eating healthy foods, I tend to be pretty easygoing and can keep calm despite stressful situations. When I’m hungry, I tend to tell people exactly what I think they’ve done wrong. I can easily rant about the problems of the world and the hopelessness of our endeavors. I also can become depressed or emotionally unstable.

This is true for me now as much as it was when I was growing up. I remember kicking myself off my bed one day when I was a teenager because I was hungry and dinner was not yet ready. Although I could have gotten a snack to satisfy my hunger while I waited, I was not thinking clearly enough to do so. Now, I have much better awareness of my needs and behavior. Sometimes I don’t realize I am hungry, but I realize that I am getting cranky and so I eat something and this tends to relax me.

In the past few months, I have been taking a daily multivitamin to see if it helped improve my mood. I tend to be a very picky eater and I know that I don’t get all the nutrients I need from the food I eat; so I wanted to try this little experiment to see if it made a difference. Although I am not sure if this is the cause of my change in attitude, my mood has been improved in the last couple months.

In saying this, I am not stating that everyone needs to be on vitamins. However, because eating a diversity of food can be difficult for someone with autism, it may be something to try. Because textures can heavily draw us toward or away from certain foods, it is especially important that we are diligent in making sure we receive all the vitamins and minerals we need. Luckily, there are now multiple ways to take vitamins- in gummy form, drinks, or pills. The most important thing is not how you fulfill your nutritional needs, but that they are taken care of. Although I’m not an advocate of any one particular diet for everyone with autism, I do believe that our diet greatly affects us.

Another reason to watch what we eat is that people with autism are more likely to have some sort of gastrointestinal issue. This is probably why the gluten free diet is so well received by some people with autism. Gluten free diets can be easier to digest and people tend to be a little more health conscious when they are on gluten free diets. In my case, I don’t believe it’s necessary for me to be on a gluten free diet, but I do need to be extra cautious of acidic foods because of my stomach problems.

In essence, the most important thing is always to make sure that you are doing what is best for you. We each have different needs and problems and it’s important to make sure we take care of ourselves. Just keep in mind the importance of nutrition and its effect on behavior and mental functioning. As we strive to keep our bodies properly nourished, our attitudes and behavior will reflect the care we have taken.

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

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?

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