Light at the end of the tunnel?

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Hi

This mail may be way out of line (AS is incurable, right?), but It might be able to assist some 'borderline' Aspies, or those who have AS symptoms like myself. (I was self diagnosed, with a 150 reading on the aspie chart site)

Some background - I am a 39 yo male, and I have had AS symptoms over the last 8 years. My wife of 10 years (whom I did and still do love) divorced me, reason: no emotional support. At the time, I had no idea what she meant. I knew she was going crazy. I had no idea I had contributed immensely to her condition.

Now, 8 months on, I have emotions, feelings, limited empathy and best of all, I feel 'alive'.
I even have something resembling spiritual beliefs I can even give my now ex-wife emotional support. And I can finally bond with my 8yo son.

Looking back, I have cycled into and out of Aspie like symptoms (so I may not be a clinical "AS") about 3 times over my life. It seems I cycle INTO aspie symptoms as soon as prolonged pressure is applied (financial, environmental, job insecurity. - i.e. I (over) react to fear)

So here's my take on what Aspergers is (Apols to the experts, but need to describe Aspies from 'outside' the mind as opposed to looking through it from the inside is a very different beast altogether)
=> AS occurs when we get stuck in a component of our own minds. More precisely, we identify only with a part of our brain as 'me'. In doing so, we then assume that everyone else (NTs) also 'live' only from this part of the brain.
We need to break that identity and reform an identity which is more holistic, and includes input from other parts of the brain, including emotion, feelings etc (I've simplistically stated as "Right Brained" functions). (Unfortunately, this identity is hard to break)
In my instance (and I think most AS), my mind got stuck in the "rationale and logic" section (simplistically labelled as "left brain" functions). I could never sleep properly, or switch off. It is contininually thinking and analyzing, optimising, speculating.

The below steps MIGHT help you tackle AS:
1) Stop thinking! (Aim : To rediscover the other components of your brain). This is much harder than it sounds to an AS
Eckhardt Tolle's Power of Now explains such a technique (skip past the spiritual stuff at this point - it won't make sense now)
The technique will only buy you a few seconds of 'clarity' at a time, but it should be enough to convince you that you might just have a shot at experiencing at least some non AS life. Listen carefully to sounds - they have more dimension. Your sense of smell should be heightened - smell sugar for instance.
(In short, Tolle tells us to stop analyzing the heck out of the past, and stop speculating and fantasizing about the future. Live in the moment, thats all life is.)

Step 2 : Now you need to 'jump start' your right brain. Again, get professional advice here at the same time. What worked for me was the shock of the divorce (all the cyclical thinking suddenly seemed trivial irrelevant now - unfortunately, and like Tolle, I needed to be in a state of severe depression before the pain was sufficient to switch off thinker).
It seems our fight or flight response lurks in Right Brain, so the jumpstart has to be something way out of the usual comfort zone.
You might try other high adrenaline sports - Bungee jumping, base jumping (activities that I guess AS wouldn't dream of doing). Something you don't need to 'think about' before doing it. But alive you will feel! (and stop whining that jumping out of a plane is illogical, dangerous or costs money)
Try to release emotions (crying, laughing etc)?

3 : You now need to start rebuilding your identity (and this needs to be done quite quickly, as the 'thinker' will quickly return in a vacuum, e.g. I found my self trying to rationalize what had happened to my Psychologist.
Try Ruiz's 4 Agreements - you need to clear out all of society's rules (since these are the bricks that 'thinker' thrives on building walls with), and form your own new simple ones, which don't require ludicrous amounts of thought.

4 : You need to seriously reconsider your career (if you still have your job;) If like me, you are in IT, Engineering or Science, you will find a) that your new "right brain" functionality gets bored quickly with intense, focused work and b) that the thinker tends to come back into dominance by late in the day. You will need to find techniques to balance your mind during the day if you want to stay employed in these fields and stay away from AS. I meditate before and after work (soft music, visualisation, clear all thoughts from my mind)

5 : Reconsider your lifestyle - consider downscaling, simplifying / eliminating sources of annoyance, and possibly moving house (parks, beach, hills etc). Get more exercise, outdoors if possible.

So, use it, don't use it, but I sure hope this helps some AS sufferers out there. And no, I'm still not the social life of the party, but I feel my EQ is non-zero and climbing.
For what its worth, my "left brain" thinker still works as well as before - its not like you are ditching it - but it just can't hog the whole dancefloor all the time.
And also note that I do still get AS bouts lasting a few days at a time - this is very unsettling for your friends / spouse / family (O, no "HE"s back). These are usually 'set off' by one of the recurring "fears"

Good Luck!

Stuart

People like myself who have AS, have had very obvious symptoms (even if we didn't have a word for it) our whole lives.

I have tried all of your suggested "cures" many times and I am now sure at this stage of my life it will be with me forever.

There have been many highly stressful times in my life, or other more pleasant times (like taking a vacation) where my brain chemistry seems to be altered so that my symptoms diminish. However, it is always temporary and my condition always eventually reverts to baseline AS.

If you think you've 'cured' yourself of AS with positive thinking, you're in for a HUGE disappointment.

If AS is in fact your true condition, its an effing brain damage that developed in Utero, and it will be with you until they nail you in your pine box. You don't 'outgrow' it.

While you will certainly have cycles during which you feel more functional than others, much of that behavior is simple 'fronting' - putting on the ol' Neurotypical mask and pretending to be like everyone else - and it may work amazingly well, for a while. About 8 months to a year, typically if you're very high functioning. At about the 12 month mark, you'll start to crash and before the end of year 2 (your mileage may vary), you will dissolve into an emotional breakdown and find yourself unable to cope with most aspects of your daily life - job, relationship, etc. Without downtime of several months of relative solitude to recuperate, you'll sink into a suffocating depression that will be very hard to crawl out of.

Can an Aspergian learn to do what you say you have done - learn to be more emotionally available and supportive and such? Sure, we can learn to maintain eye contact (although it may be almost physically painful to do so), we can learn to make BS small talk mostly by rote, to smile when we don't give a rat's @ss and ask people how they are feeling, we can go places where there are crowds of people making ridiculous amounts of racket and tolerate it for hours at a time. However, no matter what you learn to make yourself do, it will always take a tremendous psychological toll on you in the long run, because you are working against the natural firing of the neurons in your brain.

Sure, you can pretend you've changed and you may fool your SO, your boss - even yourself - for a while. But who you are will always win out in the end, because you cannot rewire your brain.

Actually, no, it's not brain damage. Brain damage is a different animal from a developmental disorder, which is what autism actually is.

The difference is that autism is how the brain develops from the beginning. There's nothing that is changing that development away from the way it "ought" to be.

For example: One of my cats is striped; the other is a calico. Calling autism "brain damage" would be like saying that my calico cat's skin was supposed to be striped, but was damaged in utero, and as a result she is a calico instead of a striped cat. In fact, my calico cat's genes code for the calico pattern from the very beginning; there was no damage that occurred. She was a calico cat as a single cell, and she is a calico cat as an adult.

Now, granted, calico fur doesn't confer a disadvantage; but in the wild, when cats were still forest-dwelling hunters of small creatures, it would be, because a calico is less easily camouflaged than a striped cat and would be easier prey. Only in civilization can the calico pattern confer the advantage of its tricolored beauty, which appeals to humans and allows calico cats to be admired and adopted by human owners who feed them and keep them as companions and working animals.

My calico cat is not disadvantaged due to her fur pattern because she is in an environment where that fur pattern is accepted and treasured, where her striking colors are an asset rather than an advertisement to predators. Similarly, autistic people in an environment where their skills are useful and their weaknesses are compensated for are also not disadvantaged. Autistic people can achieve a similarly friendly environment when they learn where the gaps are between their skills and what the world expects, find ways to fill those gaps, and learn to use their strengths.

In a world where cats are domesticated, calico cats fit as well as the prettiest tabby. In a world where autistic people can find places to learn, work, and integrate into society, autistic people fit just as well as NTs. Impossible, you say? No. It's been done before. Look at the United States civil rights movement, the women's suffrage movements all around the world, the gay rights movement, the many minorities asserting their rights and, inevitably though usually decades later, being accepted as equal citizens. Don't lose hope just because the disability rights movement isn't as far advanced as some of the others; we've made great strides in the past fifty years, and by the next fifty years, I predict we'll be accepted probably at least as well as African Americans are now.

This is right on!! ! I have tried everything, over and over. All my life I have watched people 'cycle in and out' of all kinds of mh issues. No matter where I've been or what I am doing this thread through my life has never broken. I can tolerate wearing a mask but not long, I will meltdown. I lay it all out, in general terms, when I meet someone new but they NEVER understand. It is only after being around me for a long time that they learn the thread is thick and unbreakable-unconquerable. What I have done with those who are close to me is make their person, their being, their thoughts-needs something to learn. I study them like a pet (please don't take offense-but it is like they are a different animal) and learn how not to hurt their feelings. I am, by nature, vulnerable and if they play games, they soon learn it is easy to win. I am easy to trick because I have no clue how they process information. It is not something I can 'know', I have to guess.

I have been the same as far back as I can remember.

It's strange. When I started reading your post I thought "oh no, here we go again, another clueless do-gooder positive thinker who just doesn't get it"! I've got to the end of the tunnel and it's darker than ever.... But as I read on, I realised that what you were writing actually corresponds to some experiences I have had, to a quite spooky level!


This is common. And often when people cycle *out* of it, they shout "I'm cured!! !". I've believed myself cured at several points (even before AS existed, but I just felt something was wrong with me) - only to sink right back in. And often related to *exactly* those pressures you list. Perhaps it goes the other way too. If we can avoid those pressures for a substantial period, we start to feel better?



Possibly. As you say, very difficult though. I've practiced various meditation techniques over the years and I've found that if I stick with it, I do sometimes feel better. I've also read Tolle and thought his ideas quite interesting. Not sure about everything he says, but it does seem he was a loner who suffered serious depression for many years. I'm surprised nobody has labelled him as an Aspie yet. Outing the famous Aspie is a popular sport round here.

Also, there's a huge difference between "positive thinking" and a genuine meditation practice. The latter is about contacting reality including the pain and not escaping the negative. Positive thinking is some sort of mass delusion that is afflicting the western world as it avoids reality.



Reading this part is what really grabbed my attention. Because I had the most contented, relaxed, AS symptom free time for over a decade just after engaging in a high-adrenaline activity totally outside of my comfort zone. Something that terrified me and involved real physical danger, but I stayed with it and it seemed to trigger a transformation! It was a life-changing transformation at the time. I thought I'd changed for ever, but within a few months, the old problems returned until I found myself in the pits of alienation, isolation, depression, no confidence, social awkwardness etc etc exactly as bad as it had ever been. I regularly try and regain *that* state, and occasionally it flickers into life, but has never really returned. I find i cannot 'fake' that state of inner assuredness that I had back them, much as I try. It is there, or it isn't.

For much of the time I have continual thoughts telling me what a useless, repulsive, inadequate person I am. I can make the effort to not listen, but those thoughts remain, going on and on. And I actually get used to it, it seems normal and eventually I start to see the evidence in the world that backs up these thoughts. I can try to not think these thoughts, but they still arise and it is an ongoing, energy-draining inner battle. I complete contrast, during the 'transformed' time, they simply weren't there at all! Which made it so much more easier and enjoyable to live life. Fighting the negative thoughts is a very different way of being than not having them at all.


This is maybe where I got stuck. The Thinker came back (and boy, was he out to get revenge!) . I don't really get what you're saying here about how to prevent this?


I do this regularly. But am so stuck in it and *can't* really consider anything else. Actually, during my 'transformed' time, I was more at peace with my job than usual.


I am in IT, too. Sometimes I do feel that it is not conducive to good mental health. But that is not really due to the intellectual nature of the work, but the lunacy of the organisational policies (and social aspects) that actually prevent me from being anywhere near as productive as I could be.


Again, this maps to what I thought at the time. I had a definite realisation that I needed simplify my life. However (this was over a year ago), my life utterly refuses to get simpler! It has become more complex than ever. I do live in a quite isolated country area already, but due to super high UK property prices, I may have to move to a more affordable, urban area. The thought of this brings me great anxiety as I have gotten used to not having neighbours. Again, the need to live within your financial means is often not conducive to a healthy state of mind. There are many people sufferering in our harsh, over-commercialised culture, not just those with AS.


Finding strategies for survival and coping is ongoing. If I hadn't had the experience I'd described, I'd be the skeptic telling you how wrong you are! It's what works for the individual and one of the most difficult things about being me is that hardly *anything* works for me like it does for everybody else. I've tried years of therapy and meds and they didn't help. I sometimes wonder if diet is part of this too. Some Aspies say they have improved by cutting certain foods out.

Callista, I agree totally with your excellent post! The hard neurological evidence for AS is conspicuous by it's absence right now. A lot of things have been assumed and the idea that it is a "neurological disorder" is still speculation waiting to be confirmed. I don't think it ever will be, as a 'difference' is not necessarily a 'disorder'. It is the imposition of a single NT culture on all that makes it appear as a disorder.

Even though these states don't seem to be permanent, it is *very* significant that they happen at all. Imagine if someone who had been blind all their life suddenly could see for a few months, then went blind again. We would want to know what had happened during the time of sight and try to repeat the conditions.

This actually is quite a bit like something I've read which makes a lot of sense, in my opinion. It said that autistics (including those with Asperger's) tend to use "computer thinking" (a type of logical thinking) and not use social thinking. (Yes, there is such a thing. It's what makes NTs so puzzling.) This may be because if deficiencies in social thinking, or it may be because of strong "computer thinking".

Me, I take that a step further and add in emotional thinking (I've elsewhere read about emotional thinking versus intellectual thinking). So, we've got social thinking, emotional thinking, and logical/intellectual/computer thinking. Each has it's place. Ideally, we have a good balance between the 3, able to use each when appropriate, though tempered by the other types of thinking.



Yes, easier said than done to stop thinking. It's one of those things, you can't really purposefully do it. You have to do something else that gets you there.

I love music, and much of my social life is connected with live music. Maybe, perhaps, in addition to giving me a social situation with people I have something in common with, the music puts me in a better mindspace for socially connecting. More in the moment, less thinking.

What's the similarity? "Positive thinking" as I understand it is a form of CBT (cognitive behavioural therapy), or at least something much like it. Telling oneself positive thoughts. Which can be beneficial if done with realism. Labeling what one sees in a positive way. Meditation is quieting the mind. Letting go of thought, rather than actively creating thoughts (as is done with positive thinking).

I can see the light at the end of the tunnel, just as I am, today at the present. To elaborate on that, what I'm saying is, that I had such a nasty and rebellious attitude, towards life and society, that there was no light at the end of the tunnel, for me last year, around this time.

That got me to do some serious thinking, over the summer, last year. Every time I looked in the mirror, I saw my green spikes, standing on my head, and I'd see this horrible monster. I got to asking myself a lot of questions. Do I like the 70s or the 60s better? What is my favourite rock group? (The Kinks). What are my favourite colours? Which 60s icon would be a good role model, for me? What is my favourite TV show? (The Monkees).

I saw the light, on Friday the September the 11th, 2009.

Last edited by CockneyRebel on 30 Jun 2010, 2:22 pm, edited 1 time in total.

I've read The Power of Now and am now reading A New Earth by Eckhart Tolle. I've practiced mindfulness meditation (tapping into being) for years now. I still have an anxiety problem, social problems, etc. but I do have a sense of my Being and can detach from my mind. I think Tolle is great and can benefit most of us.

However, our problem is in the brain "hardware" not the "software." I translate what I perceive socially through a very different neural network. I still can't discipher nonverbal communication, for example, which still makes conversation awkward.

The anxiety is pretty much instantly reactive. It's not based on thought. I'm not freaking myself out through negative thinking. Temple Grandin said autistic anxiety is primal, like cows who go nuts if you toss a yellow balloon among them. It's not familiar and there is instant fear.

That is not to say don't work on these things. I'm working hard on them.

No, it simply doesn't develop in the way that it ought to develop, but that's still damage - its just damage in the template created by the chromosomes. If there's a part of your brain that's not functioning properly because of the way its configured, that's damage, no matter how it got there. You're just bandying semantics. You're assuming 'damage' can only be inflicted from the outside and that's just a perception, not a fact. Damage, defect - potato potahto.



While that's an admirable goal, it doesn't change the fact that Autism is a handicap in anybody's world. Processing problems are always going to be a problem, no matter how wonderful a job you have. I loved my career, but it didn't prevent my AS from causing me problems. And as you of all people well know, those problems extend well beyond just the workplace and social settings.

I agree that we need neurodiversity acceptance from the world at large, but I'm through pretending my handicap isn't a real handicap. As long as we're only 1 in 100, it's never going to be our world and we're never going to 'fit in' as well as those its designed for.

Well the way I see-if you stand around smiling and thinking positive thoughts while all hell is breaking loose around you laughing and putting on a positive attitude-it will never change the fact that the physical world around is in turmoil and no amount of positive thinking is going to stop whatever you are trying to positively think against-I have never been able to put on a smile when I just didnt feel like smiling-my brain will not let me-I had a coworker say I need to learn how to multitask-it is an impossibility for me to do so as I am not wired to do that from birth-if I tried to and tried to put on an act of multitasking by thinking I could by positive thinking it would fail miserably. Some things just cant be put out of you mind or modified to fit the NT lifestyle.

The way I read the OP's post is that his symptoms were simply exacerbated by stress,and when he has less stress in his life he is able to function better. It doesn't seem to me that there's anything more to it than that. Meditation etc. might be helpful because it reduces stress.

It's interesting that you say that because I've had that experience. About 14 years ago (when I had no idea I might have AS), I had a therapist who thought I should be around people and be more social, but trying to do that caused me so much stress that I fell apart had to recuperate for a year. (I had to move in with my parents and not do anything except crochet and watch TV.)

What are emotional thinking and social thinking? I have no idea and can't really imagine them.

Autism is natural variation, not damage. It is a disability, but it is a normal part of the human gene pool that ought to be there--without which the human race would not have its innovators and engineers. The genetics for autism are some of the same genes that make humans unique as a species of tool-users and information-gatherers. We know this because autism runs in the same families as talent for both art and science. Disability occurs when you get, effectively, "too much of a good thing".

Yes, autism is a disability, and I am not pretending that it isn't. But I do not think that the solution is to make autistic people non-autistic. We accommodate, easily, old people and young people; and both those groups need extra help. Why not autistic people? 1 in 100 is an awful lot of people--over six million of them, in fact.

Yes. Processing problems are always going to be an issue. That's why accommodations are necessary. For me, that means a quiet place to work, and an explanation to my co-workers (technically; it's an internship) why I often ask them to repeat things, and why I need to have meetings in a quiet room. Really, how much are they going out of their way for those things? And how much are they getting in exchange? I work as hard as any other employee; I contribute just like anyone else does. And the things that let me work are things that are easy to arrange. My position is pretty average for disabled people: The things I need are things that don't cost a great deal, don't require people to change things very much, and will make a world of difference in allowing me to work.

That's all we need, really. After all, if buses can have seats at the front for elderly; and if people can make careers out of watching children too young to supervise themselves; then why can't we integrate accommodation of disability into our society? By the stats I have, about 20% of Americans are disabled. That's a pretty big minority. Many of us are working; but many more are not just because the simple changes that would let us do so are thought to be unusual and impossible rather than simple, cheap, and easy.

you can't "cycle" in and out of being autistic. stress just makes the negative symptoms much worse.

that said, OP, good that you have found some coping mechanisms that help you feel your life is in control much of the time. but don't kid yourself, or imply to others that it can (or should) be "fixed" by positive thought.

I am fully aware of the light at the end of the tunnel, I just want to talk to the guy at the switch.