Effects of Abuse

In some ways, I do not feel I should write this post because I have never really been through severe physical or sexual or even emotional abuse. The abuse I have suffered has been minimal and mostly observational, but it has still had an effect on me.

So I write this post not only to explain that effect, but also to show that you don’t have to go through something dramatic to suffer the effects of abuse. I will not describe what I suffered in this post, but I will describe how it influenced my train of thought.

I believe in justice. I believe that when you do something wrong you deserve to be punished. I believe that doing something wrong can include little things like forgetting something or not doing something you were asked to do.

I have punished myself before. I have tortured myself for my weaknesses, mistakes, and failure to comply with demands. When I could not torture myself physically, I often tortured myself mentally or emotionally. I feel pain with others when I see or think of their suffering. I have used this sympathetic pain to torture myself.

I am not proud of what I have done to myself. I have felt like I deserved to die because I did torture myself when there are people going through real torture from others. At times I have made myself sick with the physical and mental anguish over my faults.

That is the effect abuse has had on me. Some may say it did it’s job in getting me to fear disappointment, mistakes, and doing something wrong. Maybe they are right, but I question the cost.

I have mostly stopped my mental and physical torture. I have mostly stopped thinking that doing something wrong should result in punishment. But I still struggle with justice. I still struggle with the thoughts that people should get what they deserve, which is always at least some sort of reprimand because no one is perfect.

And I am slowly starting to believe in mercy and that it is possible to be forgiven without the suffering of justice.

I Want to Live

Have you ever wanted to die? What did it feel like to want to die?

(As a warning, this may be an intense post to read. It is something I want people to understand, but I understand that the information may be too dark for some people.)

I don’t know why, but I have wanted to die for as long as I can remember. I’m not saying this because I want you to feel sorry for me, but I’m saying it because people need to know. People need to know that suicidal thoughts are not uncommon. If you have ever wanted to die, you have a brief glimpse into what I feel on nearly a daily basis. Suicide for me is like the urge to eat chocolate for someone else. It’s just a part of who I am, but I resist those thoughts because it’s not a part of who I want to be.

Among people’s most common fears are fear of heights, fear of public speaking, fear of death, and fear of the dark. My greatest fear is the fear that I will not be able to control my urge of wanting to die. I fear heights because I’m afraid that my urge will get the better of me and I will jump or cause myself to fall. I worry about public speaking because I fear that if I perceive that people think negatively of me, my urge to die might increase. I don’t fear death or darkness, but rather I fear that I will one day embrace the death and darkness within me.

I fear wanting to die because I really want to live. There is so much to do in life. I want to accomplish so many things and read so many good books and learn new languages and experience new cultures and places. I fear that my urge of wanting death will overcome my desire of wanting to live- like someone’s urge to eat chocolate can overcome their desire to be healthy. The difference is if my urge overcomes my desire, the outcome will be irreversible.

I recently bought a book by my former patriarch in my hometown. As I have read this book, it has reaffirmed to me how grateful I am that my urges have not overcome my desires yet. I have attempted suicide a few times, but these were all superficial wounds. I never actually did enough damage to ever have the possibility of death. And I am so grateful for that. As Jack Rushton says, “It’s good to be alive.”

Blaming the Cheese- Part 2

So if we don’t blame the cheese, what should we blame?

If autism isn’t the real problem, what is?

Well, some people believe vaccines are to blame. There’s a heated debate about whether vaccines cause autism and new information seems to be added to that debate every day. The problem is that people are looking for a single solution. Yes, vaccines probably can cause autism, but most likely this is only the cause in a small number of children. And even if it is vaccines, it is more than likely the mercury content in those vaccines. So really mercury poisoning is to blame, not autism.

Then, once you get past all the causes of autism, what is to blame for the hard things that come with autism?

Things like self injurious behaviors aren’t really from autism as much as they are from other things that interfere with autism. For example, a child could self injure because they have a medical problem causing them pain and are either trying to communicate that problem or trying to distract themselves from that pain. Or they could self injure because it focuses their attention on something tangible rather than the intangible anxiety or uncomfortableness of their environment. So in those cases, medical problems or anxiety are to blame.

When it comes to not being able to make friends or being bullied because you have autism, shouldn’t it be society and our skewed ideals that are to blame? If we valued people despite their disabilities or differences, these problems wouldn’t be so prevalent.

 

What I’m trying to say is that blaming autism isn’t always the most beneficial or correct thing to do. Some things are autism, but some things aren’t. Blaming autism for everything that’s hard or any time something goes wrong leads children and adults to believe that they’re broken. It leads people with autism to feel damaged, unworthy, not good enough. Because even when we can hide our autism and blend in, sometimes we still feel autistic and if being autistic is equated with everything negative, it’s easy to extrapolate that to yourself. Then we become broken people and even if you’re a broken person, you still don’t want to feel broken…

A Different Outcome

As I learn more and more about autism and therapy- past and present, I’ve looked at how I grew up and how different it might have been had I been in different therapies. I was only in therapy specifically for autism once. It was play therapy and I didn’t see the point of it, so I stopped going. Other than that, my therapy consisted of the school speech therapist and the occasional psychologist.

Now when I say this I’m not saying that this is the ideal path for everyone with autism, but it worked for me. Although I think some additional therapy might have helped with certain things, I am at the age now where I can form my own therapy and work on things that I specifically need help with.

On the other hand, I look at some therapies used in the past and I am very glad that I was not involved in those therapies. I look at stories and videos of children having meltdowns and exhibiting self injurious behavior and I think that could have been me if I had been in a different situation. If people had tried to restrain me from being autistic, if people had tried to pressure me into situations I was uncomfortable with, if people had forced me into the mold they wanted to see, I think I would have had a lot more problems. I could see myself responding to those types of things with anger, aggression, meltdowns, self injury, and even hate and dissociation.

I have a very strong personality and I respond very negatively when people try to change my thought process or emotions. I need to change my own thoughts and emotions. Sometimes with help, and sometimes on my own. If someone tries to force me to change though, it usually makes my behavior worse.

I was very lucky to have grown up in a house where I was allowed to process things at my own speed and find my own way of responding to things. I was lucky to not have been put in a therapy setting where I was forced to comply to demands that I would have negatively reacted to. I was lucky to be challenged to grow within my own realm instead of being forced into a different world that I did not yet understand and pressured to grow there. I was very lucky.

I didn’t start researching autism until I became an adult and learned about autism in my college classes. I had no need to research autism before that. I had no need to understand autism. The only thing I was worried about understanding before that was myself and the world around me. And I am grateful that I didn’t worry about autism back then because it’s a lot to handle. All the information and stories and articles and studies and blogs and comments and videos are a lot to handle. Knowing you have autism is one thing, but knowing autism is something completely different.

Now that I know autism better I am so grateful that my family didn’t treat me as autistic. I am grateful that my diagnosis didn’t change my life. I am grateful that I was able to develop in the way I needed to in order to become the person I am today. And I only hope that others will be as lucky as I was.

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.

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