What is living with autism like?

Currently the one holy grail in autism research (aside from the cure search fund by Autism Unspeakable) is to find the root cause of autism. After spending some decades looking for what is broken and not having much luck the new bees knees for some research groups is now to consider autism not a monolith anymore but a spectrum caused by a variety of things. Frankly I do not know what causes autism any better than you do (unless you think its vaccines, then i know better :P). I want to discuss my thought about this issue, but first we need to be on the same level concerning what autism is. So I am trying to take you by your virtual hand and lead you to my world. You may try to walk within my shoes for a while but I have a feeling even putting on my shoes is already too much pain to bear for you if you are not autistic. One gets used to pain and one gets used to chaos. Autistic people who are able to communicate seem to have in common this skill to life an impossible life. To bear it all well enough to see the next day.

 

I often hear autism is the wrong planet syndrome. As we seem alien to other people and they seem alien to us. And yet I feel my fellow autistic people might not be from my own home planet either. There is this saying in the autistic community:

If you know one autistic person, you know one autistic person.

Meaning we all are not only different from neurotypicals but also from each other. For all the things to set us apart I understand other autistic people remarkably well. And the root for our differences often seems to be in our varying experiences and our extremely sensitive perception system. We are not only more sensitive to sounds, sights, smells and touches, but I have a feeling we are also MORE sensitive to the emotional input that gets through our various issues on how to interpret social interaction right. The unifying element here seems to be twofold:

1. we all seem to have an exaggerated or amplified reaction to stimuli

2. some emotional stimuli do not get through to us (tho I have yet to meet a nonhuman animal with which I have increased difficulties communicating)

 

Please note that the second point must not be confused with our lack of reaction to stimuli when we are overstimulated. Lack of reaction does not equate lack of perception, sometimes is equates seeing and hearing to much. And with us folks one the autistic spectrum this seems to be true very very often. In fact in most everyday situation involving social interaction there seems to be a funny interaction playing out. Living in a world that is geared toward people much less sensitive than I and normally spending time with people much less sensitive than I often leads the the logical extension of being somewhere which is overstimulating to me. There is loads of noise coming in on all perceptive channels available.

And yet here is my friend, the doctor, my coworkers or the accountant I want or need to interact with. So I am searching for the needle in the haystack. The one piece of information that helps me decipher their social cues. At the same time whenever I am around people  (even in chats online) I focus very strongly on the signals they send. I know I am unable to see and hear half of them so I need to pay extra attention to the part I do perceive. When trying to illustrate how that looks in everyday life Id say maybe for Neurotypicals are comparable situation would be this:

Imagine you are at a loud party with many people, the usual amounts of ethanol containing beverage and music so loud you barely understand what people are saying when they speak to you. And somewhere in the middle of this otherwise presumably rather comfortable environment for you your boss or your professor is standing. Talking about a very important work project including a deadline you must not miss or lecturing you about information needed to pass the exam on this course. As they are giving you this information they are oblivious to the fact that you have difficulty hearing them. They repeat nothing, they just monologue away. Meanwhile the people at the party have no idea there is your boss/professor and their important information so they are completely unresponsive to your requests of helping you in anyway (locating the boss/professor, lowering noise level asf). So a very kafkasque situation. You are under a lot of stress because you know this information is important and meaningful for you and yet you are having an unreasonable amount of struggle to obtain it. You may even be ridiculed for your efforts.

For me the stress comes from the high level of sensory input and knowing that if I get it wrong I might loose one my very limited number of friends, health benefits I need, face discrimination and so on and so forth. Its a very draining uphill battle which causes me to prefer solitude most of the time not by choice but by the unavailability of such unreasonable amounts of energy. So now that you might have an idea of what it is like walking in my shoes among the general population you might want to rethink your evaluation of my actions. Of course I don’t always react. Inside of me multiple alarms blink all the time and I barely remember to breathe. In social situation I loose all feeling for whether or not I’m hungry, warm, in need of a trip to the loo… I do not only not react to other people, I stop reacting to myself. Its simply to much to keep track of at once. But aside from being horribly overwhelmed full time being my normal state of existing among people there is also the moments with friends who really care for me. Who switch their background music off when I visit and who help me not being overwhelmed. In these situations the second dilemma suddenly becomes obvious. Now we have found the professor/boss at the party and the noise level is low enough to hear them talk and you realise they speak a language of whom you have only a minimum understanding. For me that would be french. I had it four years in school, I understand some important key points when I have the time to read the text. In spoken conversation I barely catch anything. Maybe a few stray words.

 

Now I have talked to you far and wide about my own experiences with my own quirks but obviously I have not given you a clear cut definition of autism. The reason for this is that I have searched far and wide. The struggle to find and understand the professor/boss is not alien to any of us. This is not just my experience. This is something we all can identify with. So in so many words: to me autism is the struggle to find your superior in a discotheque while he divulges important information for you in a language foreign to you while everyone seems oblivious to the fact that you won’t be able to catch much of what they say under these circumstances nor are they willing to help you in a substantial way. Now I’m sure encyclopedias worldwide will borrow that definition very soon. As an example of the mentally ill 😛

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