Autism - An Inside Perspective - Originally written in 1995, republished in 2011
This is a view of autism as seen from the "inside", as opposed to the more common perspective of a professional or parent of an autistic child.
I was diagnosed with Asperger's Syndrome in 1992, after a long search to solve a few "mysteries" in my life. Since that time, I have slowly built up an understanding of who I am, and what life means to me. Below is an outline of what autism means to me and how it affects my life.
As one would expect, autism affects every aspect of my life. Every perception, memory and interaction is influenced, for better or worse. I thing of autism not as a disability or syndrome, but as a way of living, a variant of the human condition. For me, the idea of a cure is out of the question, simply because autism colours every part of my being, and without it, you'd have not me, but someone else who looks remarkably like me! :-) Here's just a few aspects where autism makes my life noticeably different.
Senses and Sensory Processing
My senses are noticeably different to those of most people, both in the senses themselves and the way the information is processed.
SightMy eyesight itself is somewhat better than average (despite long hours in front of a computer screen! :-) ). Most of the time, I see things pretty much as most people see them. However, what I actually _perceive_ varies, depending on a lot of things. Attention is an important factor. I see things which have my attention focused on very easily, but anything outside of the scope of my attention can be easily overlooked. For example, things which are "out of place", I can easily miss, because I'm not focused on them at the time. Tiredness also plays a part. When I'm tired, these "extraneous" things are even less visible, and in the extreme, the whole background may fade away into a blur until I choose to focus on that instead. However, any sudden movement or visual interruption instantly brings the full "picture" back.
HearingI am somewhat hypersensitive in hearing, and this has a few noticeable effects. In quiet settings, I tend to clearly hear noises which are at or slightly below the threshold of most peoples' hearing. As a result, sleeping in an environment where sudden, even if soft, noises occur is difficult. I am also anxious where there are sudden loud noises, which seems to be a hangover from childhood fears, when these noises caused pain, though this is largely under control now. Some noises have a serious impact on my hearing. Low frequency noise, such as machinery or traffic can interfere seriously with processing of speech, to the point that speech is totally scrambled. I can hear the voice, but everything's garbled. The only real solution is to move away from the noise source, though speaking loud and clearly may help if it's not too severe. Complex acoustic environments, like a crowd, especially when there's echoes can cause overload, which causes me to "tune out", except when interrupted. My sensitivity extends to quite high frequencies (when I was 15, I could hear frequencies as high as 27 kHz). Some noises, like escaping air can be painful, and some TVs annoy me with their 15 kHz whistle, yet I find high frequency (treble) content in music to be very pleasant to listen to. Also, my ability to understand speech improves markedly when the high frequencies are present.
TouchPossibly a little more sensitive than normal, though not painfully so. However, I am sensitive to texture of food, and "squishy" or "soggy" foods are repulsive to me. I'm also fussy with how well the sheets on the bed are tucked in, and wrinkles drive me nuts! :-)
Taste and Smell I don't smell very well, and often miss odours which other people can clearly detect. Taste, I'm not sure about at this stage though. It's hard to compare. :-)
Thinking, Memory and Processing My thinking processes appear to be quite different to those of most people. A lot revolves around the use of my long term memory, which resembles a vast database of everything I've learned or experienced in my life. Like a computer database, my memory must be "queried" by a specific stimulus for me to be able to recall anything meaningful. Open ended questions can be difficult to handle, yet a battery of specific questions will yield extremely accurate memories. I also have a sense of how accurate a memory is, i.e. whether it's clear, or coloured by other thinking, sort of like "error detection". This "error detection" also allows me to re-evaluate my experiences from a more objective perspective in the light of new information, because I am able to sense when my memories have been affected by bias.
My thinking process can best be described as "virtual reality", where images, sounds, feelings (both emotional and physical) are all a part. With this style of thinking, I am able to visualize things as if they were in front of me, and sense anything to the point of feeling stress in inanimate objects as a "pain". This makes violent movies unpleasant to watch (I can "feel" the pain the characters are going through, even after they're dead). Using metaphors to represent more abstract things, such as mathematical concepts, I can also handle these as well, and simulate electronic and software systems by "running" them in my mind and manipulating the process. Needless to say, I learn best with unconventional methods, which are often trial and error, so I can build these mental models.
Communication and Social Issues It is often said that autistic people have "impaired communication". I personally believe that it is not so much an impairment, but a "difference". Interacting with other autistic people reveals that communication is smooth, and a large component of that communication appears to be intuitive (i.e. not consciously noticed, but in retrospect, has actually taken place). However, the rules are different, and appear to be very structured (With relatively few autistic people to talk to, I'm still doing my "research" on this aspect). Conversation is quite different, and though, when expressed in words, a lot of the "protocol" seems similar, there are subtle differences in timing and how conversations generally proceed. This causes a lot of confusion with many non-autistic people. Timing is important. After the end of a sentance, there is only a few seconds where I'm still ready to hear the next sentance. Many people like to "tack" a few words on the end, several seconds after finishing their previous sentance. This is a recipe for endless frustration and misunderstanding with me, because not only do I not hear those last few words, but also I have different ways of asking for repetition of those words, which makes things worse! :-). My communication is also direct and problem oriented, like instead of asking for help or an answer to a question, my natural instinct is to state the problem. With other autistic people, this is usually understood in the light it was intended, but with anyone else, it often comes across as abrupt and even rude. However, I have managed to work out a set of rules to "translate" between my style of communication and that of most people, which goes a long way to addressing a lot of these differences.
Emotion is also an important factor. It is often said that autistic people lack empathy. My observations is that the reverse is closer to the truth, and any apparent lack of empathy is more likely to be the result of a misunderstanding, or emotional overload, because myself and most of the autistic people I know are very sensitive to others' emotions, and some have reported "feeling" the emotions of others, as I have mentioned above.
In summarising, autism is misunderstood by many people, and as a result it in perceived as a handicap. In a sense, it is a handicap, but in my experience, a lot of this is because the world is geared to the way the majority of people think and communicate. I suspect that if one "typical" person spent some time in a setting that was controlled and structured to suit autistic people, they would face similar difficulties in dealing with that setting, as we face on a daily basis.
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