Autism, Asperger’s Syndrome, ASD, WTF?
I’ve told people I have autism, and they have no idea what I’m talking about.
I’ve told doctors I have autism, and they very rarely know what I’m talking about.
I read current medical texts about autism, and they don’t know what they’re talking about.
Autism is complicated. Very, very complicated. I’m going to try to show you how complicated.
Imagine a person. This person is the most average person that ever existed. “Average Joe”.
Joe never gets too mad, or too happy, too frustrated, or too hopeful. Not too much passion, not too much sadness. He listens to Maroon 5.
A completely average human on every level that you can imagine. Fear, pain, emotion, sight, hearing, taste, touch, balance, imagination, wisdom, speed, reflexes, likes, dislikes, art, science, strength: If it exists in a human person, it is of average level, in our Joe.
Now, imagine someone like me. I’m human, I have all of the traits that the next human has, but mine are not all average. Some are tuned impossibly high, and some frustratingly low. On the fortunate side, for instance, I’m what doctors like to call “functionally autistic” or “mild Asperger’s”, but conversely, my “flight or fight” trait turns on as soon as I exit the house, and doesn’t turn off until I’m home again.
This should give you an idea of the range of traits that autistic people can feel, but these are only two. Think, for example, of coupling my flight or fight response with working in an office for a living, and, well, I can tell you how that went down.
Flight always wins, eventually. It’s one of the traits I can’t seem to fight down, not for lack of trying.
Tuned impossibly high. I can’t fight it.
I told my girlfriend this info last week, and she said “I don’t think I’ll ever understand what you feel like, exactly.” and I think she was right.
I mean, how do you convey that all of your emotions are tuned very differently than what people expect? Then, how do you explain to each individual your sensory needs, without sounding crazy, and before said emotions get set off like a short-fused time bomb?
Well, we use words like “autism”, and “Asperger’s Syndrome” (named after a dude who died in 1980 – 33 years ago), or acronyms like “ASD” (Autism Spectrum Disorder, or slamming your left fist into the keyboard).
My problem? All of these terms imply we’re not human. That’s not much of a personal offense to me, but it’s a very important scientific one.
The autistic spectrum IS The Human Spectrum. It is, undeniably, the same spectrum of traits that we all have, to varying degrees. To treat it as anything else wastes time.
I am no more autistic than you are human. I merely have fluctuations on the Human Spectrum that cause me to operate differently, if I’m being all Occam’s about it.
My human spectrum of traits has been altered. It doesn’t get any clearer than that, science. Use that as your starting point. You should also probably start making a list of every human trait you can think of.
(Just as a side note, if you have a doctor that thinks he understands autism, and she doesn’t understand this concept, they will likely be of no help, in my experience.)
ASD isn’t a bad acronym, but I would certainly change it to Altered Spectrum Disorder or something, and be glad to do away with the old, traditional, incorrect terminology. It better communicates what’s going on – I think – tremendously, and would make autistic kids feel less like freaks.
(Altered Human Genome?)
This is not a scientific viewpoint from the outside-in.
This is an ASD viewpoint from the inside-out.
Trust me, science, this is valuable information, because I know what you know about autism, and it ain’t nearly enough.
That’s about right for me too. I expect people to know my thoughts ahead of time, I expect people to see things like I do, and I expect people to think like I think, and they very often don’t.
Nothing wrong with that, we’re just a minority, as far as how “traditional” thought is … thought of. I’ve been reframing a lot of my opinions lately, and I think that science desperately needs our help, opinions, imagery and analogies to understand ASD. It’s not so much a disability as it is hyperability – I totally made that word up – and we understand ourselves far more than science does, at this point.
Science has a very, very detrimental view of ASD.
It seems that people without ASD think in a linear fashion, don’t have a miasma of thought constantly going through their heads. They can do things like meditate, work assembly lines, or drive for 16 hours straight without going crazy from all the other stuff in our (my) heads. I, certainly, find it impossible to think or work in a linear fashion. I switch thought processes extremely often.
I see, remember, and categorize things in imagery. It takes an extra processing step or two, to get my thoughts out, because I have to translate my answers from image to word. Writing is excellent, since you really have all the time in the world to get your thoughts out, but in a one-on-one conversation, it’s hard to know where to begin.
Outside for me is everything. All of my inputs are tuned way too high. In the confines of the house – awesome. Gaming, movies, comics, guitars, music, drawing, computers, design, repair, study, stimming – it truly is delightful.
Outside? Loud noises, people constantly looking at you, running into you, bumping up against you, not looking where they’re going, hawking at you, the heat, the cold, the humidity, the wind, the rain, the smells – it often is a nightmare.
The most helpful exercises I try, are the ones that tweak my own processes. I try to examine exactly what’s happening, down to the biological computations – or as much as I understand – and see if that process is worth running.
I’m trying to switch from being a victim of my processing, to being in command of it. I talk back to myself all the time now, eventually scolding out processes that seem silly to me. For simpler things, it’s handy, but the dug-deep stuff – like my flight or fight response – is winning easily every time, so far.
I don’t care. I’ve gotten rid of a lot of my fear of failure processing, and I’m no quitter, so I’m hoping if I keep hammering at it, I’ll win, eventually.
We’ll see. 😉
Thanks for sharing this post. I feel the same as you. When I am at home, I am completely comfortable. When I leave home and meet people in the outside world, I get a little nervous and that’s one reason I do not get my point across to people very often. I feel that sometimes I have to shout to get my point heard.