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C2V
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08 Dec 2015, 7:11 am

I've encountered a weird situation. Recently I have gone through a lot of life changing, life-or-death type situations that have forced me to adapt, and to function better in the world. I have put in a lot of effort, and have seen the rewards of that effort. But it is a constant effort, seen or unseen.
Since, people have repeatedly told me "I would never have guessed you're autistic!" the few times I have told people about it. And for myself, I have noted more ease in functioning with people the more I practice.
But inside, the better I adapt outwardly, the more autistic I feel inwardly, and I feel myself almost resisting appearing to do better, appearing to be more neurotypical, because people are treating me as if I am neurotypical, and completely discounting the ways autism effects me, no matter how I may appear. I believe the word is "invalidating." They're treating me as if I must be making it up because I can come across "well," with preparation and practice. If I acted "more autistic" as I naturally would, I feel like people would take me more seriously when I raise autism-related issues.
In a strange way, I seem to be shooting myself in the foot by actually doing better, because people dismiss my autism and how that impacts my life altogether, just because I can now speak to people and care for myself.
I know many people are going to be thinking I should be happy people can't tell I'm autistic because their more severe autism can never go undetected - but I feel invisible, expected to have no autism-related difficulties just because I can fake it when I have to, and no one sees how much effort goes into my normal act.
I don't know what point I'm trying to make here, it's just a dissonance I noticed, the proverbial catch 22.


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neilson_wheels
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08 Dec 2015, 7:41 am

I have been in this position in the past, found myself over-stretched and still not happy. I made a decision to try and be, and act, as natural as possible and this was still not a good balance. So somewhere in the middle would seem to be the best compromise all round.

If you see your neurology as an elastic band that can be stretched to some degree, yes it will take some effort to change it's shape, but this effort is invisible to others. If you stretch it too far, too often, you will be exhausted or possibly snap completely.



Ettina
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08 Dec 2015, 7:54 am

'Low functioning means your strengths get ignored, high functioning means your weaknesses get ignored.'

You have clearly become high functioning.



C2V
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08 Dec 2015, 8:52 am

Quote:
If you see your neurology as an elastic band that can be stretched to some degree, yes it will take some effort to change it's shape, but this effort is invisible to others. If you stretch it too far, too often, you will be exhausted or possibly snap completely.

This has happened before too. I was hyper high functional for a time through a four month course of intensive training and three months working on the job I trained for, to all appearances super high functional even by neurotypical standards and very "high achieving," which all resulted in me having some kind of breakdown where I lost everything except my most pronounced autistic traits - I went almost completely nonverbal, became deeply obsessed with one interest to exclusion of everything else, couldn't speak to or relate to people or leave the house except to buy material for my interest, didn't even look at others let alone any eye contact, didn't eat or wash without prompting, slept constantly when I was not engaged in my interest and my physical health declined so fast I was in hospital several times and they had no idea what was wrong. People accused me of making this up in an autistic sense, too, because I "used to be able" to speak and work and remember to eat and wash and be "normal," so therefore I still could and I was just "faking" being that obviously autistic. I've built things back up slowly from that point until now, when I look almost normal again. All these people who doubt I'm autistic because of how normal I seem never saw me during that time, when I didn't even recognise my own reflection in a mirror, like a bird pecking itself in a window.
I'm aware of the possibility that if I am starting to appear normal, I may be in the process of pushing myself right into another one of these breakdowns again, and I don't want that. But when I raise this and tell people (like the employment services personnel) that I have to be careful and not push myself too much, I get "but you seem so normal, I would never have even guessed you're autistic!" Implying that I'm not, and I should be able to push as hard as anyone else.
Hence, the catch 22 - I can't be autistic because I can at times of hyper high functional performance appear almost normal, and when I go too far and crash and appear very autistic, I also can't be because in the past, I was "normal."


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neilson_wheels
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08 Dec 2015, 9:03 am

Yes, I agree, it does feel like walking a tight rope.

Try not to be harsh on yourself or feel judged by others either. It's important that you don't over stretch yourself for your own health and welfare. Know your own limits. Be polite but stand firm.



BirdInFlight
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08 Dec 2015, 9:06 am

I can relate to this, the mistaken perception other people have when you're striving and succeeding to come across better-functioning than you can realistically maintain, and it's pretty much the downside of trying too hard to just "not be" autistic on the outside, if you will.

It's true what they say, low functioning and your strengths get ignored, overlooked and invalidated; high functioning, your weaknesses/sufferings get ignored, dismissed, not believed, invalidated.

When I was a young adult I forced myself, out of my own decision, to make a massive, massive push to "enter the world" and carve out a "normal" life that I saw all around me others having. I was determined to push my very clear deficits aside and "just be normal."

I'm using quote marks a lot not as quotes but to highlight the cliche nature of some of the terms I'm using.

I succeeded to a certain extent although I'm sure it wasn't a flawless performance of NT-ness, as I still noticed odd reactions from people from time to time, making me aware that I still come across as not totally just like everyone else.

But largely I functioned "normally" with great effort and determination.

But it burned me out constantly and I didn't even know why. I had shutdowns and meltdowns -- and this was in the 80s and 90s before I even became aware I may have Asperger's (all that came much, much later, in the last eight years of my life, in fact).

And also, because all the people I had managed to have in my life thought of me as perfectly normal, just like them for the most part, I was severely judged by them when I DID start to crack.

At the first sign of meltdown, shutdown, etc, sensory issues rearing their heads, my friends did what my family used to do -- hate me, get impatient with me, refuse to wonder what's going on, instead just thinking "what the fck is wrong with you, you f*****g freak...." Seriously, I've had every reaction from surprise and withdrawal, to outright contempt and anger thrown at me just because I basically "crashed" and couldn't go to that family event, couldn't tolerate something any longer that I'd been "good" about over and over before, etc.

If I had myself learned that, say for one example, my sensory issues are real, or that my social overload has a triggering point, I could have then pre-empted even just my own suffering, let alone the adverse reactions of others to my suffering. I could have been living my life bringing a subtle pair of earplugs along, or a book and a plan to excuse myself to a quiet room for a break, or knowing I will only stay at that noisy party for an hour. A lot of stress of my own and rejection and anger from my friends and family could have been completely avoided if I had:

1) Fully known and acknowledged my challenges
2) Because I fully owned them, take proactive measures to manage them
3) Because I fully owned them, not try so hard to suppress them
4) Help others to be aware I have them, in the form of telling someone if the need arises, explaining a few things, and basically putting people on notice that I have to "manage" certain situations a certain way in order to stay happy and healthy mentally.

While I'm leery of all-out disclosure, I do think that all-out suppression of one's traits or challenges does indeed bit you in the butt, in the form of the people around you reacting with harshness and surprise instead of compassion and care-taking, should you ever bust out into ASD-related distress, anxiety, meltdown or even just a stim they might find disturbing.

There's more explaining to do when every has been fooled into thinking you're just fine all the time, when inside you're not.

I'm still wrestling with this, however. A lifetime of suppression and striving to just fit in is a hard habit to break and I'm still causing myself distress and problems with this stuff.



neilson_wheels
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08 Dec 2015, 10:08 am

Ultimately C2V, I feel that resisting is appropriate in certain circumstances, and you should not feel guilty about doing this if it is in you best interests.



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08 Dec 2015, 11:23 am

Yeah, that is the curse of the "high functioning." It is part of the cause of my burnouts. I have gotten to the point where I just don't care what people think anymore. I have to do what is best for me. I don't go out of my way to make efforts to appear "normal" very much anymore because it takes too much toll on me and I can't stand it when people tell me I'm not Autistic because I don't appear how they think an Autistic person should appear during the hour they are with me. I know they mean well and are trying to make a compliment but it is really infuriating, very insulting and very rude. And sometimes I am tired of having to constantly educate people on the subject.


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08 Dec 2015, 11:36 am

The environment that all neurodiverse people have to contend with is society's misunderstanding, ignorance or fear of their condition. This comes out in the previous posts: however hard you try to fit in with 'the norm', something that is exhausting and often painful, you will eventually be identified as being either 'weird' or a 'fraud'. Any form of diversity - neuro or otherwise - is still far from being accepted, and until it is things aren't going to change. This is a major challenge for all of us.



C2V
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08 Dec 2015, 9:00 pm

Quote:
I can't stand it when people tell me I'm not Autistic because I don't appear how they think an Autistic person should appear during the hour they are with me. I know they mean well and are trying to make a compliment but it is really infuriating, very insulting and very rude. And sometimes I am tired of having to constantly educate people on the subject.

Indeed. It's another example of where people are actually insulting you and stigmatising a whole group of people based on their own prejudice while thinking they're paying you a compliment. I have encountered this before. I don't tell people often about the autism thing unless it's directly relevant, and when they give me the "I'd never have been able to tell!" thing, the implication is clear - autism = bad, so if they tell me I don't appear autistic (whatever that means) then that = good. They don't consider that I may not consider autism to be a bad thing at all, and there is no need to try and reassure me that I appear neurotypical.
I get the same thing on the very few occasions I tell people I'm trans - the response is almost identical. People tell me "wow you don't look it, you look really good!" They assume my goal is to look unquestionably cisgender, and that I would as a matter of course regard looking like a transsexual as a bad thing, because transsexuality = bad. When I don't consider this a bad thing, either, and am perfectly happy looking trans.
In this way the most liberal and PC of people are really showing up their underlying bias, that essentially, difference = bad so the appropriate response is to reassure the person they appear normal, as of course they assume the person wants to look. Why people can't just acknowledge and respect your difference is one question we can never seem to answer.
But that line of thinking actually clarifies things. It may not be about me and how I'm acting or not acting at all, it may be about other people and their prejudices toward difference, and the need to make everyone else like them.


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Edenthiel
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08 Dec 2015, 9:27 pm

Hyperborean wrote:
The environment that all neurodiverse people have to contend with is society's misunderstanding, ignorance or fear of their condition. This comes out in the previous posts: however hard you try to fit in with 'the norm', something that is exhausting and often painful, you will eventually be identified as being either 'weird' or a 'fraud'. Any form of diversity - neuro or otherwise - is still far from being accepted, and until it is things aren't going to change. This is a major challenge for all of us.

That's why I prefer to associate with groups that include *plenty* of neural atypical people. They have their own faults and biases, but mixed groups tend to be inclusive and understanding by design. It's sorta like that test where you are shown a wobbly, imperfect, more or less round shape and asked if you consider it a "circle"...


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