Behaviour modification and mourning what's lost

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It hit me this evening that I'm unhappy trying to live like a non-autistic person. I find that no matter what I do, I cannot live like the majority. I get exhausted and sick as a result and it keeps happening no matter what "coping strategies" I attempt. And I even realised this evening that I miss the world of my own that I used to live in all the time. I miss stimming without knowing what stimming is. I miss being deeply lost in my thought processes for hours at a time without bothering to worry about the time passing. I miss how I used to solve the problem of being overwhelmed by even the smallest, simplest of social interactions by just not engaging in it in the first place. I greatly miss how rapidly I progressed at my special interest, music, by obsessively practicing for hours and hours without getting tired, bored or injuring myself.

I've made all these changes to my lifestyle to try suit the daily life of a typical person, if you know what I mean. I taught myself eye contact, I studied books and websites on what conversations are and how to make and sustain them, I learned that there was this thing called body language and a way of using it, and all that added together makes me pass for normal in many social settings. I learned from about ten years of scolding that rocking back and forth is not to be done in front of other people, and I learned from being teased about it that doing weird stretches and things with my face is not acceptable either. I've started being involved with other people's lives a bit more, I've long forced myself to tolerate unpleasant sensory experiences without showing discomfort,

One of the most saddening things about the changes I've made is that, since I began eagerly observing others for signs of appropriate social interaction, I found that the biggest and most important thing of all was judgement of everything around us. Judging someone's clothes, hair, voice, lifestyle, intelligence, popularity... All these things about comparing ourselves to others and voicing, to somebody else, what we observed, no matter whether it's a nice thing to say or not. I was so fearful about engaging in this behaviour - and yet, out of desperation to "fix" myself, I did.

Yet nothing's changed about me at all. Apart from learning to act and becoming tougher on myself to force my way through the day in the way of a non-autistic person, nothing is different. I'm not coping better no matter what I try. I cannot stop stimming, ever. I MUST rock and fidget and scrunch up my face. I do the important basic things I need to do, yes, but I get so exhausted by the simplest of things (e.g. a "to-do" list of maybe three or four easy tasks, fitting in household chores with college, navigating my way around town to do the shopping) that I get "shutdown" including feeling nauseous/getting headaches, becoming panicky and feeling extremely tired. It's as if changing the way I live, in order to do things "properly" and, most importantly, get through all the little things that every person needs to do to survive (food shopping and making meals, showering and dressing in the morning...) have had as many negative effects as positive. I'm doing the things I need to do, and of course that's good, but I feel rotten pretty much all the time. My mind never stops having to race along behind my actions. I've even become dreadful at practicing music. I used to be very, very good at music for my age. Now I'm just average for my level of musical education and, in fact, slipping. It's like I can't make that part of my brain work like it used to if I'm doing all the other things that the weaker parts of my brain struggle with. Maybe it means I'm putting tremendous amounts of cognitive energy into all the other stuff and hence losing out on the skills I once had, when once upon a time it used to be the other way around.

So, does this mean that I'm destined for one or the other - able to get by and get things done but with exhaustion sickness and constant anxiety or other emotional strain (if that actually counts as "getting by"...), or just being plain old autistic and barely interacting or coping with the complicated world around me, whilst making tremendous strides as a musician? And what happens if I let myself be autistic regardless of what the world thinks; I know I'd be happier and healthier and far more successful in my area of interest, although I'd need assistance to do those chores and to-dos - but would I regress, losing my ability to act the right way around people and forget how to tolerate eye contact and get through social events without hiding in the corner looking anywhere but at the other people?

I can't imagine myself coping well with the basic necessities of day-to-day life when letting myself be autistic, especially things like food and clothes and keeping on top of rent, but to be honest, I don't feel like being ill every week or fortnight from pretty much constant mental exhaustion means that I'm coping right now. Not sure what I'm saying makes much sense... Just feels like I'm between a rock and a hard place. What do you folks think? Ever felt the same?

Or is it perhaps possible that Asperger's Syndrome was the wrong diagnosis and that I have a lower-functioning type of autism than that? I just still feel disabled in spite of all the work I've done for myself. And I find it bugging me the more I find people saying that Asperger's or autism isn't a disability, because this is how it is for me, and certainly not because of pessimism and/or laziness. I beat myself around all day every day just to do all the little things I need to do. Maybe I should ask for a reassessment? Feeling very confused...

Or is it perhaps possible that Asperger's Syndrome was the wrong diagnosis and that I have a lower-functioning type of autism than that? I just still feel disabled in spite of all the work I've done for myself. And I find it bugging me the more I find people saying that Asperger's or autism isn't a disability, because this is how it is for me, and certainly not because of pessimism and/or laziness. I beat myself around all day every day just to do all the little things I need to do. Maybe I should ask for a reassessment? Feeling very confused...

I stopped being able to do my one special thing (mathematics) at the same time as I started trying to be like other people. I could still gracelessly "go through the motions" of doing what I used to do with some real grace, but it now distinctly and horribly felt as if a part of my brain unsuited to that activity had taken over doing it, just because that part of my brain could act more "normal" - and indeed, it didn't know how to do anything else, and it couldn't even do that one thing convincingly! - while the part of my brain which used to really be able to do something fell into disuse, because the "normal" part of my brain rejected that other part of my brain as mad and bad.

I kept up trying to act normal for decades, but it never worked. It's as if the world said to me, "You must act like us, there is no alternative, but we are never going to accept you anyway. Too bad if that is a contradiction, we aren't interested. Just go away, and cease to exist. Meanwhile, we'll accept this stupid hollow shell in your place, and look down on it, and attack it, for pretending to be like us, when you know and we know that it isn't."

I'm cutting a very long and complex story short here, but I mustn't go on about it too much yet, because it remains to be determined what my condition has to do with autism, if anything. No sensory problems, no stimming, ... in lots of ways it is obvious that I can't possibly be autistic, yet there is also so much in common at a very deep level, and WP is a place where time and again, several times a day, I see people discussing things which I have never seen discussed anywhere else, and which I thought were utterly peculiar to me and couldn't be talked about at all.

I'll just say that in my case, at least, trying to suppress my "real" self, and trying to be "normal", was an utter disaster. The "act" goes very deep, it affects you at every level of your being. What should be the deepest expression of your freedom and identity as a person - work, language, sex, marriage, everything - becomes a confining and destructive act, a shell (reinforced by the stupidity of psychiatry and psychotherapy, if you get involved with those, as I did), and yet it never becomes real. The pain and the waste never stop, and no "normal" people ever have a clue, or even want to have a clue, what is really going on with you.

What follows in your case, however, I have no idea.

Excuse me if this is another of my typically overheated and pressurised intrusions into WP threads!

I think I'm identifying with you there... It's that childhood comfort and happiness in being myself that I'm starting to miss and the skill I had that's fading. It hurts so much right now to think that I'm doomed to losing the part of me that was strong because of trying to strengthen other parts. It doesn't seem possible to have both, it feels like it has to be either one or the other - a really good act with hideous side-effects, or wild talent and determination but exclusion from the rest of society and dependence on someone else to cover the stuff that makes me miserable and unwell. I've realised what's been happening to me and I feel scared about where to turn, as both paths have a very ugly side... I'm just glad I'm seeing it now, although the psychiatric clinic I've been referred to seems to think I don't need psychiatry or... well, anything. Everyone seems to think my autism is barely there, that also makes me regret working so hard on my act. ARGH!

Last edited by Niamh on 23 May 2011, 8:30 am, edited 1 time in total.

There's no reason why AS would be a wrong diagnosis. Your issues with choosing between pursuing your dreams and acting like an NT are very common among those on the spectrum, including Aspies. It's not true that people who have AS are "just socially awkward" and that's it. In fact, we are full-blown autistics in every respect, except that those who have speech delay or developmental delay are not allowed to be diagnosed with AS.

I've found myself facing this choice too; and as far as I can tell, it really isn't a choice at all--because if you choose to act like an NT, you will eventually burn out and be unable to do it anymore, and it could take you years to recover.

No, I suspect you would not "regress" since you have always still really just been yourself doing other things anyway.

Personally, and while at the time knowing nothing at all about either my own AS/HFA or anyone else's, I spent a full half-century trying to be and/or to do whatever seemed necessary to "fit in" somewhere and to try to function "like everybody else", so to speak ... and all of that ultimately got me nowhere while actually wearing all of me out a bit early.

Be yourself, but be wise in your doing of that. The "you" inside you both can and will do just fine even though few people around you might ever understand.

So I guess I should give up the pretending while I'm aware of what I'm doing to myself? I've become so good at pretending to others that everything's easy and normal to me that I have even started pretending to myself. But I couldn't fool myself for long because of the never-ending anxiety and stress and increased incidence of shutdown. What I realised yesterday is that I'm never happy or relaxed and can't remember the last time I truly was.

But my biggest problem is the disabling side of being myself. While I'm dragging myself through the things I need to do every day, I'm physically and mentally unwell pretty much all the time, and getting worse as time goes on. But if I stop doing those things, who's going to do them for me? I have huge difficulty with thought processing, attention deficit and my short-term memory is dreadful. This is why the little things are so difficult for me. Shopping, making/eating meals, having clean clothes ready, other house chores, errands to be done in town, phone calls, general self-organisation, even personal hygiene... These are the biggest sources of stress and mental exhaustion. The sensory issues make it all worse of course, and multitasking is an instant source of overwhelm. If I choose to keep trying to live non-autistic, I'll succeed in getting these done, but I will eventually burn out - and if I choose to live as my real autistic self, I'll admit to myself that I need help with all these unavoidable to-dos, but I can't afford an assistant, nor do I have a friend or family member who would be willing or understanding enough to help (and I'd be embarrassed to ask when they have their own lives to worry about!). What happens then?

@leejosepho - you mention that I should be wise in this - what kind of mistakes are there to avoid? Any pointers you might have from your experience would be great! Ya I guess there will be a lot of people who refuse to believe me and who will probably think I'm just acting autistic for attention or something. I have already dealt with bullying and controlling behaviour from a small amount of people since my diagnosis a year ago, just for sharing the diagnosis with my friends/family... I can imagine how those same people would react if I actually let myself stop hiding the condition.

There is the dilemma. We each need to do what we need to do, yet we must be able to sustain that in order for that to really make any sense in the end.


I say that is good reason to make some kind of change or "adjustment" in your life.


To my own degree, I struggle with those same kinds of things.


Avoid the either/or kind of thinking of trying to only be either autistic or neurotypical. Give yourself permission to just be yourself, and then actually allow yourself to just be yourself. You might never get all the "unavoidable to-dos" done to NT satisfaction, but you do have enough self-awareness and a bit of "pretend" within you to do them for the autistic you still do happen to be.


Because I happen to be married, I hardly ever have to deal with anyone else in my life. Nevertheless, I do still have to deal with that at least within my own mind on a daily basis ... and there is where I mention my own personal experience: Give yourself permission to just be yourself, and then allow yourself to actually do that! We never need to apologize for being on the autistic spectrum.


Your situation is your own and its details will be different, but I do not mess around with people like that. Rather, I just state actual facts and then let then decide how they want to act ... and then I decide whether or not to ever again even mess with them at all.

Thank you for encouraging me to be myself... ya, it doesn't make sense to choose between autistic or NT, but it makes sense to choose myself, and that happens to have autism in it somewhere.

I wonder about balancing out everything... I want to get buried in my obsessive lengthy practicing but it doesn't allow for all the chores and other in-between things. I don't know how to do all those things without using loads of mental effort. This is how it feels like an either/or choice... I feel like giving up on habits of pushing myself to do the stuff that needs to be done, but then I won't get them done, especially if there are deadlines involved... I'm in constant stress, and even today got up and felt extremely angry just because of normal little morning things - getting out of bed, showering, dressing, having breakfast and getting my stuff together to go do what I had to do in the morning. I found myself throwing things and swearing furiously under my breath because I had the instinct to sit on the bed and let myself get lost in my thoughts, but I had to get up and do all those little everyday things. And that was only at the getting dressed stage. Physically they're so easy, apart from the sensory impact, but my mind has to work furiously to keep up... I picture it as a funnel - you can jam as many thoughts as you like into the top, but the thoughts will keep trickling slowly out the bottom to their destinations, as if only one at a time can fit through. I don't really know what to do about this, I'm not even sure anything can be done about it...

Maybe I should accept that that's how my brain does things and should look for some kind of help for things? Perhaps it's the best way of achieving the great success I'm capable of? Starting to like an image of myself being a really successful musician (and/or barista, possibly... ) while, in the background, someone is covering much of the stuff that I struggle with. I love the thought of living independently, but I guess there comes a point when one needs to admit that a bit of help would go a long way... Maybe I just feel a weird sort of guilt for being a bit dependent and that's what drives me to try "fix" myself, resulting in me denying to myself my own true personality and abilities/inabilities.

It's just a thought, but can you perhaps learn to think of yourself as two people? As there is no-one to look after you, you have little alternative but to look after yourself. The danger is that the caretaker self takes over completely, and the creative side of you is starved. So the caretaker self has to learn to consciously make room for the creative side - or perhaps more accurately and concretely, set time aside for that side of you - almost exactly as if that side of you were a different person, whose needs must unselfishly be considered. On the other hand, the creative side of you has to learn to be patient, and allow time for the caretaker side of you to get all those other annoying things done. The two sides of you must learn to cooperate, rather than each trying to be the whole of you, and leaving no room for the other, and interfering with the other's activities. As I say, just a thought! And it may be what you are already trying to do, but finding impossible.

Whew. Our morning routines and challenges are virtually identical!

Be true to yourself exactly as you are ... and then work on being as content as possible with the outcome.

Last edited by leejosepho on 23 May 2011, 8:37 am, edited 1 time in total.

Twirlip, ya that's kind of what I think I'm doing already, I'm trying to split myself in two but it's not working... Great way of portraying it though, and that might work pretty well for someone else or perhaps in a different life situation. Ya I have nobody but myself to look after me, which I really want to be able to do, I just can't figure out whether I've not tried enough coping methods or whether it's just not gonna work... Is the two-person idea a strategy that you use yourself? Or do you have other ways of getting through stuff?

It's something that's pretty much forced on me by the fact that the "caretaker" side took over completely for decades, it's hard to recover any awareness of who I once was, and when I do, it's like getting glimpses of another person.

I don't really get through, I'm not really coping at all, and therefore I'm not a good source of advice for what to do, except perhaps what not to do, in order not to get in the fix that I'm in!

Wow, perhaps this thread says a lot about services and certain "treatments" for autistic people... We're taught to use the strong parts of our brains to compensate for the weaker parts, forcing them to work in a way they're not meant to, and all that really happens is mental exhaustion and regression of the good things we had... And we already know that children get all the attention and the world forgets that we become adults...

Absolutely.