Every day since learning the diagnosis has more or less been: I still have no idea why/what xxx (insert an aspect of human behavior largely considered normal) is, but now at least I feel marginally less pressure to understand.
Rudy Simone, Aspergirls :
To find out you're autistic is quite a realization to have in your teens, but in your 40s or 50s it means you have to look back at your whole life and re-frame everything; every incident, every moment, with this new lens to look through. It's like getting glasses after spending your whole life near-sighted. Obviously, the longer you've gone without the diagnosis the more work you have to do in looking back. And in some cases, the more damage to your spirit, psyche, and relationships you have to undo. There are stages we have to get through once we, as adults of any age, find out we have Asperger's:
* Awareness - We find out about Asperger's and the information speaks to us but it just hasn't hit home yet. We may experience some resistance or denial.
* Knowing - The irreversible understanding that you have Asperger's. The realization clicks.
* Validation - Asperger's explains so much in a life that often seems to have had no rhyme nor reason. This is not one moments that will continue for years if not forever.
* Relief - I can finally as the song says "Lay my Burden down". We don't know what our burden is until we're diagnosed but we can tell that other people don't seem to be carrying it.
* Worry - What does this mean for my future and my potential?
* Anger - For all the blame and misdiagnoses that may have been laid upon us by others or by ourselves. Hopefully we will then get to the next phase of our lives.
* Acceptance/thriving - We become keenly aware of our gifts and deficits and use what we have wisely.
I don’t know if I’m doing this in order, but I’m pretty sure I’m hovering somewhere around anger mostly.
This past year, I’ve been trying to read some books on Asperger’s, but wasn’t really able to do a good job of it.
I just can’t seem to handle it. I’d like to hope, ‘yet’.
I read articles and impersonal descriptions online just fine. And I have Tony Attwood’s book too, and perhaps I should have tried to read that one first…
But the full “Guide to Aperger’s” is big and serious, and I thought I’d ease myself into it by reading much thinner personal accounts… like “Pretending to be Normal” Liane Holliday Willey or even “Aspergirls” by Rudy Simone… and that’s where I thought wrong. I don’t know if I’m just too bitter right now, or am constantly in an unstable place.
Reading about mildly confusing but generally supported childhoods gets me angsty and snuffling after every paragraph, even when I later read that usually the difference is only that what I went through in elementary/middle school, others still went through, but perhaps somewhere closer to college age. But then the chapter when she begun talking about friends had me in tears 2 seconds in and I almost flung the book against a wall as hard as could… which was rather unfortunate because I also for some reason thought that reading it in small portions during lunch at work would be a good idea.
Whatever it is, I can hardly read these personal accounts without getting frustrated or tearing up, and there’s nothing good about these tears. They are no tears of relief, sympathy, or empathy. They are bitter, and resentful (even if not towards the words and those who wrote them), and exhausted. And I really don’t like myself like this. I don’t want to be this person tearing up 20 times a day from some kind of self-pity or what is this even. I think Simone wrote in the Introduction how it made her exited to read these accounts by other women, because they finally allowed her to recognize herself in others, or identify with someone, and I get that. And I wish I could feel like that too. I wish I would just read these to learn more about others and myself, to maybe even get some hints that could help working through it, to understand things a little better. The problem is, is while I can identify with most of related issues, and am perfectly aware of the fact that each person is different and even if share some one ‘thing,’ there is no way for any other experiences to have any overlap, I still… just can’t handle it, apparently. And it is not really about perceiving my experiences ‘worse’ than the way someone else had it. Though, to be honest, I don’t even know what is this about, really.
And there are plenty of people who are not diagnosed until well into adulthood, and say things like ‘I wasn’t diagnosed until my child was,’ but I’m still in that bitter corner where I just want to narrow my eyes and say “yeaaah, the point is you still managed to get married(likely) and have those children though, didn’t you?” And the marriage and children is not the point, it’s the fact of being on the ‘inside’ of the human society, and having enough social abilities, where you’re even able to do things like that.
I laugh like a maniac. Louder and longer than necessary, in many cases. And when I do I often ‘float’ outside my body, and get a little scared watching myself laugh because it feels unnatural, and like I can’t control myself, and like I try to laugh too hard because I’m either afraid I’m not doing it right or that it’s going to be the last time.
Linguistics and the act of speaking itself, have always been among my keenest interests, but I did not become immersed in the treasures they awarded until I studied them in high school. Words, and everything about them, hold my concentration like nothing else. On my over-stuffed bookshelf sit several thesauruses, a half dozen dictionaries, famous quotations books, and a handful of personal reflection journals. Language appeals to me because it lends itself to rules and precision even more often than it does to subjectivity. Put together in the right sequence, taking into account things like tone, perspective, implications and intent, a writer can tweak and bend words until they say precisely what they should. I am fascinated with the opportunities words provide. I love everything about them, especially the power they yield. Some words can please my eyes, given that they have the symmetry of line and shape I favor. Other words can fascinate me by the melodies they sing when they are spoken. Properly handled – with care most of the time – words can work miracles on my sensibilities and my understanding of the world, because each one has its own personality and nuance and its own lesson to teach.
Not everything about this resonates with me. But what it does is remind me of that feeling of absolutely needing words to be right. Feeling them as images and physical shapes, and getting very frustrated when I can’t manage to find the right words to form the right pictures, and when people ask ‘but what is “right”?’ like I’m preoccupied with something that shouldn’t matter… Or why languages fascinate me and I feel like I need to learn more and more of them all the time.
Sometimes, the care I give to words can throw me into an obsessive compulsive ritual. I typically end up spending far too much time selecting which word to use and too much time reworking a sentence so that it looks and feels and sound right. This all translates into fixation that can grind my thought process to halt. When I get like this, I cannot concentrate on anything else, not a thing, until I have found the perfect term or phrase I need. This tendency can make my experiences with the written word tedious, at least in terms, at least in terms of time and other missed opportunities, but never meaningless or futile.
Unfortunately, in my case, I am not in the place yet where I would be able to say that last bit, about it not being futile. Also because sometimes, when I try to think about it too much, I lose track of all words, their meanings lose all colours and get all mixed up in my head. To the point where something completely different from what I intended comes out, and I can’t even tell anymore. I’m chasing myself between these two extremes all the time.
Sometimes it takes me a really long time to realize something.
Recently I’ve finally really understood the mechanism behind the everyone’s notion to tell people that ‘it’s all in your head’, ‘you’re the one who has to save yourself’, ‘you just need to change your mind set’, ‘you’re the key to your own happiness’, and so on and so forth, I can’t even remember or the major examples…
It’s quite obvious, really. We tell this to people so that there can be no notion that there’s a responsibility on us to help them. If we make sure that everyone believes that they must be able to save themselves from the inside, and not expect help from anyone else, no one is going to blame us from doing nothing. And we don’t need to feel guilty when people who needed our help lose their fights, we then can only say that they didn’t ‘want to try enough’.
And when we <i>do</i> decide to help someone, we then can be praised as heroes who went beyond anything that could be expected from us.
Fact is, sometimes some of us really fall into situations, in context of mental health or otherwise, where there’s nothing more we can do ourselves to help ourselves. Sometimes people drown and they can’t be the ones to pull themselves up. And while other people are not actually required by anyone to help them, it would be great if they at least stopped blaming it on those who are in trouble. Telling a person with serious metal health problems that ‘they must be more positive’ or ‘stop being depressed or autistic by changing their way of thinking about things’ is like standing on the ground above a drowning person and shouting ‘it’s your problem that you don’t even know how to swim properly, just do better’. Yes, some percentage of people will still have strength to float or swim ashore, and it may even work for them. But it’s <b>not</b> for the spectators to decide who can or cannot do it.
This pattern of behavior that equals to saying ‘I’m not going to help you, but I’m going to save you by telling you that you just have to save yourself’ really disgusts me. If you can’t/don’t want to help – no one forces you, be on your way. Just stop using people who are suffering to boost your self-esteem by pretending you’re saying something wise and helpful by telling them to stop hurting.