To me, autism is home. It is a place where I belong. I always have. It
is protection against the overwhelming sensory information coming at me
from all over, and the too high and too demanding expectations from my
parents and family to be "normal". It was, and always has been a buffer
between me and their utter incomprehensibility. To be fully conscious of
what I was doing, and of my existence has always been painful, and was
very much overloading. I simply could not stand it. One phrase an ANI
friend of mine used to describe one of us trying to function the way NT's
do is like a tazmanian devil in a glass factory, where we're the glass.
He also has used the example of a dragon in a bomb factory. (we would be
the bombs). |
"Being normal", or at least attempting to be was always an exercise in futility in my case, as none of my best efforts were good enough, and I routinely was given the impression that I was incompetent as a human being. (i'm not a human being DAMN IT!! I'm an alien!! :) ) This won't make anyone feel very good, but instead of making me feel bad about myself, it brought the conclusion to me that other people really WERE useless things/entities after all, (not like I had cared about them before, but they were insisting that I pay attention to them, and were being overwhelming in that, so i attempted.) and if my best efforts came across to people as me being incompetent, and a screw up as a human being, then it was better not to try at all, and at least know that I was capable at being (such as it was) if I did it my way/ followed my own ways. Rather than that I was some entity with very mangled relating ways. I could not accept that as myself. In my opinion it was better not to try at all than to try my hardest, and come across as incapable.
So therefore, to me, autism, although an unnamed and unnamable thing at the time was always, and has always been a living thing in me, and always felt as if it were the "real me"and the only thing live in me; the only thing that was 'right'. If it hadn't been for that, I would've turned out a very mangled (seemingly human) being for sure. It was like my mind was very undeveloped when it came to 'human' or people concepts. If I hadn't felt that life in me that came from the strangest of all concepts (in their terms) then I wouldn't have been able to maintain my sense of who i was, and would've been very much at the mercy of their beliefs and impressions. I would have had no sense of "me", and would've carried out (or been carried by) my life in a state of living death. For this, I am **VERY** glad of my strong sense of "otherness" and, in that, my autism.
Autism protected me from succumbing to the human evilness I was exposed and subjected to. Gunilla has made a mention of being glad of being protected from the evilness of humans, and I have to agree. Although I was within human evilness situation(s), being "other" kept me separate and whole. The pain I felt at the isolation from others of my kind and separation from them, and at not being allowed to be me; at having to follow "their" ways, and having nobody realize the extreme-ness of the differentness (if at all) is worth the effect of having a me to come back to, and a worthwhile sense of living and being.
Yes, there is a down side to autism, but for myself, I never realized that until about a year or so ago. The circumstances I had made it so that there really was no worth in trying to communicate with the others about anything that came from me, nor was there anything worth paying attention to or anything ... there was no reason for me to bother to make the effort to EXIST in their world at all. I was forced to pay attention and to interact and give the appearance of "care"in their world, but I took every single second of opportunity I had, and any and every method to hide from anything relating to their world, because it was so excruciatingly painful. I felt like I was being destroyed. As it was, I did not know I existed until near the end of this summer. I never bothered with the concept; there was nothing to make me WANT to know I existed. I am 20 years old.
I quite simply did not have any reason to pay any attention to the outside world (though it appeared I did... I eventually became quite good at "appearing" to pass for NT.) I had very very many reasons NOT to, and quite simply , i hurt too much from missing my people, my home... They had cut off virtually all access I had to myself, my being; autism. How can one survive when all that one knows, all that one is is cut away from them??? Somehow I managed to do it. Barely.
Anyways, Now, because of ANI, things have turned around completely, I have my home, I have my people. Now I can tell you what autism is, because i am living in a sense of being/existing. There is a sense of life to my existence now. If someone had asked me before I had found ANI, I could have only said it was something I was missing terribly, and it was a part of me that had been ripped away... that all I felt of it was the fragments, which, because they were so important to me, their presence, or shattered state, to be more exact; their existence in such a shattered state felt like shards of infinitely sharp glass, and/or razor blades in my stomach eating away at the edges of the emptiness that filled me. Now, I can tell you about the down side of autism, because I recognize it, and I have a life outside of missing it... before, any fragments I had, good or bad parts of it, were so vitally important for me to have that I used them all as a barrier against me and the outside world, and didn't care for anything else but their survival.
Now, yes, the problems I have with communication (especially speech) are a nuisance sometimes, but they are a part of me, and I have lived with them for so long that they have become comfortable. Sometimes the difficulties really do run counter to what I desire, and what I really want, but I can't blame them, because they are only trying to protect me, and often are a protection device. I don't understand all of their intricacies, and/or reasons, etc. but such things have always protected me before, so I will let them do what they want, and simply use a different methods to get across what I want. (I.e. writing instead of speech.) Or, if that won't work, then I'll simply wait, because I know that later, it will come out the way I want it to , once anxiety levels, and overload sensations go down. Sometimes having to deal with these complications makes me frustrated, or I will show signs of annoyance, etc. but they are (usually) only superficial, as once I get past that, I know it will work eventually. Being in my cocoon is very comforting sometimes, and I have learned to cherish it, even when I'm not desperately hiding from something(s). I know I will come out again, and be able to communicate, and with my autistic friends, and a very limited and select few others, know I will be understood. It has been discovered (at Autreat, and during the whole week i was in autistic company) that sometimes I can even communicate when I am detached and/or isolated. :) Sometimes even without forming an attempt at communication in any way. it simply flows between us somehow. ;) I guess it must (or could) be that sixth sense Joan and Rich talk about.
Yes, i feel trapped occasionally by my inability to communicate(when it won't work at all, and there is something I really really want to or need to say) but for one thing, I know if it's that important, it'll come out eventually, one way or another, and secondly, if it's really really necessary that it come out, and I cannot process it the usual ways, then I need to find other ways around that barrier that my systems will allow me to use (i.e. that don't hurt me) rather than trying to force it through the ones it won't allow, even if these ones it won't allow are the ones other people expect me to use or try to demand that I use. The cost of using these systems is too high for me to try if there are other ways that don't cause such reactions such as overload and/or shutdown, and/or anxiety that I can use. I have come to put my own comfort ahead of other peoples' expectations, and everything works a LOT better that way!!!
Yes, there are times when we are cut off, even from each other, we are not always able to be in contact with each other even though we're together... but this is allowable, and understandable, and ACCEPTABLE. It is a part of who we are, both as individuals and as a group. it is part of our culture.
As for my sensory sensitivities (especially sound and light) , again that is my body telling me it's being overwhelmed, and if I accommodate those sensitivities and avoid those things which I find painful, I find I am much more comfortable, and more able to pay attention to the world around me, and I CAN be happy and have a fairly pleasant life. I can enjoy what I do, and not always be occupied by how much I hurt or what is missing or is overpresent.
In many ways we are like NT's, just everything is more intense, and we think differently (possibly and probably because of this.)
Therefore, Autism is a friend, a comfort, a companion - albeit a rather annoying one at times, but so are all companions. It is also a protector, a buffer... And it's who I am. Jim makes the statement that if it were possible to separate the autism from the person, and it were done, then what you would have left is not the same person you started with. In my case, it wouldn't even be a person; it would barely be an entity, or alive without autism. i would virtually not survive. (maybe a shell... surviving; a physical body, but that would be all. There would be no being.)
What ANI has done for me:
ANI has given me a place where I belong; a place where i am not a stranger, nor strange in any way possible, which I had always been in human society. Nothing i could do, say, think, or be could possibly be considered strange by them. I fit in. Finally, people who think the way I do, 'speak' the way I do (word usage and order that is), & finally I don't have to translate my thoughts before I speak/express them; I can talk the way I think, without having to filter them first for 'strange', 'unusual', 'wacked out' thoughts, terms, ideas/concepts.
They have the same problems understanding people I do; they talk about things in extensive detail, & sometimes appear to be totally bizarre in some of their terminology or concepts (to NT's) I am the same way. My sense of humor fits into theirs; I am not considered strange for finding rather simpler things than NT's do funny. & I can make an attempt at humor, & not be looked at as weird or off on another planet; they understand; they laugh!!!
ANI has taken the pain of being alone and without those of my own kind away. I am no longer isolated from those who understand me, are "like me". I have found my home. Miracle of all miracles. I am not a defective being, incapable of communication, interaction with them. I am a fully capable and worthwhile entity whose existence is valued & appreciated when I'm with them.
I can stand consciousness with them; they have taught me that it is actually a preferable option to be aware of what I'm doing, and of a "me"- of what I want, feel, think, etc. I have actually become convinced that I DO exist after all; that existence is something that could or can be enjoyed, rather than just having to be beared. That I am more than just a disruption in space; that I am separate & mobile from my environment; that there is some sense of life in this space "I" occupy & what's more, since spending a week in their physical company, just under half of that at Autreat, I discovered that we *are* actually alive after all, and that this can be a good thing, or at least not a bad one. That being alive doesn't necessarily mean being dead meat immediately... that I won't be killed for being me after all. Hell, I even learned out at Autreat that we are *A* people also, (if not actual "people"..."people"are evil, "people" refers to humans mainly - the overwhelming sense of physical existence, awareness, beingness, etc.) & while we don't fit their definition, as a group we are live, are alive, mobile, thinking, wanting... everything else that comprises "people"; we are just separated from, and apart from those we are forced to be around (NT's) We really are NOT defective versions of them; we are separate , different beings - we just happen to look like them. that is the most difficult part, because most people don't realize there is a difference. They figure we should be like them, and there is no reason for that, as we are **NOT** them, we are **US**!!!!!! & should be, & have ***EVERY REASON**** to be like ourselves!!!!
Also, another of the things I am very, very grateful to ANI for giving me, or rather getting rid of, is the emptiness, and razor sharp edges to that, and... I used to describe it as broken shards of glass eating me up inside, and/or razor blades... that disappeared actually slightly before the depression did. :) I can feel whole for a change - for the first time in my life!!! It took me quite a while to get used to that, and sometimes it still amazes me the difference ANI has made, but there it is!!!
Basically, to sum it up, ANI is life, and autism is home
|The ANI web site was last modified Wednesday 26 June 2002. Comments, questions, and suggestions concerning this site should be addressed to the webmaster at ANI. Regrettably, due to the webmaster's heavy workload, personal replies may not always be possible.|