It’s All About Timing

The past few weeks I have had a lot going on and it has been pretty stressful. But the added stress, has reaffirmed to me how important timing is when you have autism. Well, timing is always important, but it can be an especially important factor for someone with autism.

I talked about timing before in a guest post that I did a while back. In that post I emphasized how important timing is in preventing a meltdown. (You can read that post here if you’re interested.) With the stress of the previous week, and the accumulation of stress over the past few months, I have been reminded why timing is so important.

I’ve heard it said that we all have buckets and that when those buckets get too full, we overflow and the result is meltdowns or blow ups. For me, I can tell that my bucket is getting full when things become harder to deal with- when sounds that I can normally ignore feel like jackhammers in a closed room, or when a gentle touch feels like unbearable pressure. I don’t know how most people feel when they get stressed, but for me it’s like all of my senses are magnified and it becomes very hard to deal with sensory input.

However, by taking some time away from everything and refocusing myself, it becomes a lot easier to deal with the world again. It’s all about timing. If I don’t have time to regroup, even simple things can seem like impossible barriers. But if I have the time I need to relax and refocus, I can often handle the more difficult things.
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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.

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.**

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.

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.