LBnuke

This post was inspired by an article written by Rachel Cohen-Rottenberg and published on The Commons. More of Rachel’s writing can be found on her blog, Asperger Journeys.

Rachel’s website includes a list of 100 Myths about Autism, and her article focuses on ten of those. After finishing the article, I found my thoughts lingering on myths #2 and #10.

Myth #2: Autism is a mental illness.

Autism is not a psychological disorder. It is a neurological condition in which the brain and nervous system are highly sensitive to sensory stimuli.

When the average person takes in sensory information from the environment, he or she intuitively filters it, prioritizes it, and responds in a purposeful way. For autistic people, sensory processing works very differently. The information comes in full force, without a great deal of filtering.

For example, I have almost no ability to filter auditory information. Anywhere I go, I hear a cacophony of sounds and voices, all at the same high volume. It is difficult for me to have a conversation with a lot of sound in the background, because for me, there is very little background. Any loud, crowded, unstructured situation causes me nearly immediate sensory overload.

I also experience the visual world very intensely. I am constantly scanning my environment, looking at numerous details, and attempting to order them into some sort of pattern. Because the visual world constantly changes, my ordering process never stops. It’s only recently that I’ve realized that most people do not experience the visual world with the same intensity that I do.

- Rachel Cohen-Rottenberg

I have been misdiagnosed throughout my life. All or most of these diagnoses were mental illnesses (i.e. shizophrenia, depression, anxiety, etc.). No idea if these were also correct to some degree or other, but finding out what is really going on has been a pretty big thing for me.

Treatment is the same for most of these things, so there were no major changes as far as meds go, but finding other people like me has been a major event in my life. I feel much less alone, have been exposed to massive amounts of information and resources, and finally have a name for “what is wrong with me”. Very helpful when telling other people. Much better than what I used to tell them: “My brain doesn’t work right”, “I hear screaming in my head”, “I don’t think right”, “I am crazy”.

I am not really sure how much it matters to other people whether it is psychological or neurological. Not even sure it matters to me, except that I am a stickler for accuracy. Honestly, I don’t really know what the difference is between psychological and neurological conditions affecting the brain. My guess is that for psychological things, it is an outside factor affecting the way the brain works, and for neurological things, it is the brain itself causing the ‘problem’. Any of you docs or social workers out there know the answer?

Rachel’s description of sensory processing is exactly the same as the way I experience it. I have personally never found the words to describe it so well, but she and many other people have, allowing me to share this description with others in a way that I could not before.

I think all of these first-hand descriptions and corroborations are very important in this time where autism awareness is growing by leaps and bounds, thanks to the internet and other media. The autistic spectrum is large and the range of people’s experiences varies greatly, but the amount of similarities in thought processes, perception, and experience is definitely worth documenting!

Myth #10: Autism is a disease in need of a cure.

This statement is the focus of passionate debate.

Like many others, I do not consider autism a disease. As researchers at the Swiss Brain-Mind Institute wrote in a 2007 article, “The autistic person is an individual with remarkable and far above average capabilities due to greatly enhanced perception, attention, and memory. In fact, it is this hyper-functionality which could render the individual debilitated.”

At present, there is no cure for autism. I understand why some people on the spectrum might want a cure. Being autistic, even at a high-functioning level, is very difficult. For people on the severe end of the spectrum, the condition can be truly disabling.

Personally, I do not want to be cured. Autism makes me who I am, and it has given me many gifts. I am sensitive, empathetic, and artistic. I see great beauty in the world, and I feel its injustices very deeply. I am very direct in my speech, and for that reason, people intuitively trust me.

I would not want to be different. I am proud of who I am. It has taken me 50 years to discover the truth about my life. In the time remaining to me, I plan to mine that truth for all its worth.

- Rachel Cohen-Rottenberg

This is probably the most controversial myth of all. I am not even sure how I feel about it myself. As a generalization, I do not agree with it at all. Politically, I think it is a very dangerous statement. Personally, I wonder about it.

There are times in my life when I would rather have been dead than autistic. Of course at the time, I did not think of it in those terms, but I did think of it in terms of that bad things happened to me because I was different from everyone else and could not figure out how to ‘do things right’. The only way to make things better was to not exist at all. Luckily, my young black and white brain was more concerned with not making my family sad than with feeling better.

As an adult who is no longer in such constant pain, I now also realize that my best skills and attributes are most likely also due to being autistic. Of course there are many things that shape a person, but on a very basic level, I believe that being autistic has been a huge factor in becoming the person I am, not only due to genetic or physiological differences, but also due to the way people have treated me over the years as a direct result of my differences, and by my reactions to that treatment.

As a result of my own experiences, I am not always sure that I don’t want to be cured. For the most part, after several years of learning and trying to accept this, I am usually happy to be how I am. If I were ‘cured’, I would lose the best parts of myself along with the worst. My life would be easier for sure, but the price of losing myself is too high of a cost to pay.

My “choice” of not wanting to be cured has much to do with the fact that I have a loving supportive partner and family, and that I am able to gradually build my business and work for myself. As much as I feel that it is wrong to say that autism is a disease that needs to be cured, I also think that a cure might benefit many autistic people, regardless of how “functional” they are. I know those are fighting words in some circles, but I really wish they weren’t.

I was reading an article called “Shutdown: A Specific Type of Meltdown” written by Gavin Bollard this morning. Shutdown is a pretty hard thing to put into words, but he did a pretty good job of it.

Technically, there aren’t too many differences between meltdowns and shutdowns. Both are extreme reactions to everyday stimuli. … While a meltdown could be described as rage against a situation, a [shutdown] tends to be more of a retreat.

Shutdown and meltdown have always had the same meaning in my mind, the only difference being one of intensity. Gavin describes them as two separate things. I can kind of see the difference when described like that. When I was younger, I used to have both meltdowns and shutdowns. I don’t think I have meltdowns anymore. I could be wrong about that. I still have shutdowns.

There are things that affect the frequency of having shutdowns. Medicine has a pretty huge effect. If the meds are working okay, it happens much less often. Stress always makes it much more likely to happen. If my head gets loud enough, there is close to a 100% chance that I will shutdown.

For me, a shutdown is very scary. My distance from the world and everyone in it is greatly increased. Often I can not speak at all. I can hear, but the delay is longer than usual. It hurts in a way I can not describe. Almost equal parts pain and numbness. I’m not even sure that makes sense, but it is accurate. Emergency medicine can stop it, but it makes me very groggy, even into the next day. I hate that.

Gavin wrote of having “what if” and “if only” types of thoughts when shutdown. I do not have these thoughts or any others. Sometimes it is because the screaming is too loud. Sometimes because I have no ability to put words together into thoughts. I think I would like to coin the term “wordled” to describe that particular situation. Or maybe that is copyright infringement.

It is interesting to read how other people experience these types of things. When they happen to me ‘out in the wild’, I find myself in a position where I need to escape as quickly as possible, but can not communicate that need to anyone. It makes for some awkward situations and sometimes leaves people wondering what is wrong with me or thinking I am an unfriendly freak.

Unlike meltdowns, where it’s best to leave the aspie alone but in a safe place, it’s generally ok to talk in a soothing voice during a shutdown.

I agree with Gavin about the “cure”, but I wish there was a better one. For me, shutdown is often a matter of overstimulation. There is a filter that people seem to have that separates sights and sounds and colors and words and smells and textures and motions and other supposedly inconsequential stimuli. Mine does not work right. It makes the world a whole different place. Sometimes that is a good thing. But not today.