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It all made sense when we found out we were autistic

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Re: It all made sense when we found out we were autistic

#191
post #106

Earlier quoted context omitted.

Mainly just making a concerted effort, when something went wrong, to go back and analyze why it went wrong and what I should have done differently. It took a lot of trial and error (like 10-20 years worth), and even today I will sometimes freeze up in social situations because all of the things I can think of to do in some situation are being flagged as "wrong" based on some prior experience.

> Mainly just making a concerted effort, when something went wrong, to go back and analyze why it went wrong and what I should have done differently. It took a lot of trial and error (like 10-20 years worth), and even today I will sometimes freeze up in social situations because all of the things I can think of to do in some situation are being flagged as "wrong" based on some prior experience. Perhaps you should wri…

Could you elaborate?

One thing I learned only post-diagnosis is that all the stuff I thought I did to figure out how to fit in, in hindsight, was extremely scattershot and not very rational. A lot of the lessons I never learned as well as I thought I did.

These days I try to be more methodical (keeping logs, lists of lessons, etc), in part because I'm allowing myself to lean more into my 'nature', and it's already proven effective.

Re: It all made sense when we found out we were autistic

#192

Earlier quoted context omitted.

This, a thousand times this. I've often struggled in social situations, I've had problems with friends, and I've had friends simply laugh at me "Oh my god, you're so strange some times" and just take the piss out of me and the things I do / I've done. Sometimes it hasn't mattered, other times it's really bugged me as I've not understood why I'm the one at fault / why I'm the weird one, and why it's not them that's we…

I'm curious about your "mask" statement. I have that same feeling, and experience with alcohol. Do you ever imagine yourself to be a robot? Or do you memorize and rehearse things to say in social situations? I often feel like I am operating a virtual machine at social gatherings. I tunnel in and give myself commands to operate like a normal human being, but I take absolutely no pleasure from the social interactions.…

I'm not the OP, but I associate with everything they said, so here's my take if you're interested:

> I'm curious about your "mask" statement. I have that same feeling, and experience with alcohol.

Same, but I still drink a lot. It helps clear my mind. It's really apparent when two distinct groups of friends meet and the masks that I used for each set (which tend to be different) need to be reconciled. That can be uncomfortable.

> Do you ever imagine yourself to be a robot?

Oh hell yes, when I was younger (I'm nearly 40 now) especially. I desperately wanted to be a robot. Now, I mostly just love robots, and have built them (https://sendcat.com/dl/LcVKl5kWv6LJZEYusgVq9bLoieURiffZX7cKa...).

> Or do you memorize and rehearse things to say in social situations?

Kinda, but not in the "rehearsing a talk" sort of way. I do pick things that I've heard and apply them in other similar social situations though.

> I often feel like I am operating a virtual machine at social gatherings.

I've had that feeling, also that it feels like a game at times. Interestingly it feels like I'm creating a neural network of how what to do and say, but not the one in my brain, one of my own making.

> I tunnel in and give myself commands to operate like a normal human being, but I take absolutely no pleasure from the social interactions.

I think at this point playing the game has become almost transparent to me, it turns out I'm pretty good at it. I've developed a set of behaviours that work in most situations I find myself in (user groups (talks, the bar after), conferences, weddings, etc. etc.) and I do enjoy the friends I've made at the local Ruby and Go groups.

I do still have to force myself to do certain things though. Ask about people etc. Switch the conversation from what I want to talk about to them.

> I also get EXTREMELY tired, very quickly, even though I am able to function for a brief period at a fairly high level.

Social situations tire me too, though I can definitely manage full conference days or weeks of company meetup if I push myself. Towards the end I'll just spend hours by myself recharging, put on a smile and throw myself out there again.

It's tiring, but ultimately rewarding. I've made friends, I've had good jobs etc.

Re: It all made sense when we found out we were autistic

#193
post #106
post #55

Earlier quoted context omitted.

I would be interested to hear what things helped you most in changing your situation, though! I'm still at an early stage of actually 'doing' stuff to improve things, so I'd be very curious to hear what worked for you.

Mainly just making a concerted effort, when something went wrong, to go back and analyze why it went wrong and what I should have done differently. It took a lot of trial and error (like 10-20 years worth), and even today I will sometimes freeze up in social situations because all of the things I can think of to do in some situation are being flagged as "wrong" based on some prior experience.

This really resonates with me. I consider myself to be on the spectrum, as does my wife, and I am frequently only a passive participant in social functions because I've learned that most of my normal interactions are "wrong" so I just watch and wait until we can leave.

Re: It all made sense when we found out we were autistic

#194
post #191

Earlier quoted context omitted.

> Mainly just making a concerted effort, when something went wrong, to go back and analyze why it went wrong and what I should have done differently. It took a lot of trial and error (like 10-20 years worth), and even today I will sometimes freeze up in social situations because all of the things I can think of to do in some situation are being flagged as "wrong" based on some prior experience. Perhaps you should wri…

Could you elaborate? One thing I learned only post-diagnosis is that all the stuff I thought I did to figure out how to fit in, in hindsight, was extremely scattershot and not very rational. A lot of the lessons I never learned as well as I thought I did. These days I try to be more methodical (keeping logs, lists of lessons, etc), in part because I'm allowing myself to lean more into my 'nature', and it's already pr…

> Could you elaborate?

It is not completely obvious to me what kind of elaboration you desire. So if my longer explanation here misses the point this is probably the reason. :-)

In your trial to find out the strange rules of society you surely made unwillingly lots of accidental experiments that often went wrong. At the end you probably developed some kind of theory of how humans seem to behave, where each rule that you developed is backed up by evidence from an accidental experiment.

If you are interested in history of physics, you surely are aware that developing even what is called "classical mechanics" (I don't even want to start with electromagnetism, relativity or quantum physics) was a lifetime work of many generations of scientists. What a waste of time would it have been if everyone of them had to start from point 0.

So you accidentally have developed something that might be a start of some kind of theory of how people/society really behave(s) (rather think of pre-Newton physics, e.g. Galilei already found out that (ignoring air resistance) the falling time is independent of the mass and the falling time increases by square root of the height; of course where these "strange" laws with strong experimental evidence come from needed the invention of calculus).

So back to "What a waste of time would it have been if everyone of them had to start from point 0.". What a waste of time is it when people all the time had to derive all those laws to which "ordinary" people in society behave (and cannot explain why) from ground up.

So document the rules about people/society/... that you found out and document the experimental evidence that gives strong evidence to you that these rules that you state do indeed hold (a scientific theory is worth nothing if it is not accompanied by a proper documentation of the experimental evidence for it).

Perhaps (if it not embarrassing to you) it is a good idea to use tools that the web provides (e.g. some kind of wiki or Github) so that other people can cross-check your theories, validate your evidence or present counter-theories which also explain your experimental evidence.

You are in a very early phase in a theory of the hidden rules of society (as I told: think where Galilei was in terms of classical mechanics), so this means you probably have to consider lots of frustrating foundational questions. So you are perhaps a true pioneer. But I believe it is worth it, because this might enable researchers who work in AI better understand humans/society.

Re: It all made sense when we found out we were autistic

#195
post #185
post #124

Earlier quoted context omitted.

I'm Autistic. Diagnosed at the age of 16 with moderate-severe Asperger's in 2001. I struggled all throughout middle-school high-school and even some college to understand other people and to make friends. Middle school was the worst, because I was endlessly bullied, very depressed, extremely lonely, and constantly told that I was "weird". Before my diagnosis I remember breaking down in my school's counselors office b…

Hi [redacted]. Thank you for sharing your powerful story. A loved one is going through a similar experience (though struggling with the schizophrenia spectrum). I would love to ask you a few questions but couldn't find any contact info in your profile here. Is there a way that I can get in touch with you? (My email is in my profile; if you send me a short note so that I can have your email, I'll followup). I particul…

I'm sorry to hear of your loved one who is struggling. I hope they are able to find some peace and a way to live a happy and fulfilling life.

I would be happy to answer any questions you have but your email doesn't show up for me on your profile. The easiest way to reach me would be on reddit. Send me a PM. My username is kitanata2.

> I particularly curious about the experiment they discussed at Fox Run, with taking you off all the drugs to reset you for a proper diagnosis. Did they try it?

At Fox Run they did take me off all the drugs I was on. Some were weened off over the course of a few weeks, and some were just ended. I believe there was a concern about the abruptness of ending the medication potentially causing epilepsy. The withdraw was terrible and took weeks to get past. I spent many days in a corner twirling a pencil and being "spaced out" during that period. There isn't much I remember about Fox Run expect a rather traumatic experience when I first arrived (which I don't want to discuss publicly), and then a positive that the food there was excellent. Some of the best scrambled eggs I ever had. :D I find it better to remember and focus on the good things, rather than the bad.

> Did it work?

That depends on your definition of "work" here. The goal I think was to remove me from medication, and then observe me for diagnosis because the medications I was on (and there were a lot of them) caused behavioral changes in me. Fox Run didn't actually do the diagnosis of me. I believe that occurred while I was at Parmadale. I am sure that had my diagnosis been different, they would have placed me back on medication to address that specific diagnosis, but it was determined that I didn't need medication because I was autistic and not mentally ill as previously thought. I want to be careful here. I didn't need medication. That doesn't mean other people don't need medication for their specific diagnosis. I am not a doctor, but I think generally taking people off medication is probably a pretty risky proposition.

> Is this a standard diagnostic procedure?

I don't know. I'm not a doctor. :(

Re: It all made sense when we found out we were autistic

#196
post #124

Earlier quoted context omitted.

I'm Autistic. Diagnosed at the age of 16 with moderate-severe Asperger's in 2001. I struggled all throughout middle-school high-school and even some college to understand other people and to make friends. Middle school was the worst, because I was endlessly bullied, very depressed, extremely lonely, and constantly told that I was "weird". Before my diagnosis I remember breaking down in my school's counselors office b…

You are right about the importance of understanding problems. But in your story, a lot of the problems came from people giving you (wrong) diagnoses. dkarl is saying what works for him is just working directly on the constellation of traits he has without looking for a diagnosis. True, things got much better for you when you got the right diagnosis of autism. But as i14ng points out below, autism is "just" a name for…

> But overall, would you have been better or worse off if society just made fewer psych diagnoses and you never had the right or the wrong ones, but people just helped you work directly on your traits?

I don't think it's worth speculating on the past, on whether one approach would have been generally better than the other. Hindsight is 20/20, right?

I do believe in one aspect of the argument, and that is one of empathy. If you see someone struggling with something, or they are exhibiting a "trait" that you think isn't normal, then finding a way to help them is a worthy goal.

I think the problem here is trying to understand and define what is "normal" and what "traits" are worth looking out for. This is where things start to devolve in philosophical disagreements. As other commenters have said in the thread, there is a difference between being socially shy, having extreme social anxiety, and being autistic. Even in the realm of the autism spectrum you have different issues and presentations to address. When is something actually a problem? How do you identify the problem, and then how do you address that problem?

I don't think it's as black and white as we want to believe. I think labels and diagnosis can help, and they can hurt. The most important thing is to be aware, and to have empathy and compassion for others.

Re: It all made sense when we found out we were autistic

#197
post #124

Earlier quoted context omitted.

I'm Autistic. Diagnosed at the age of 16 with moderate-severe Asperger's in 2001. I struggled all throughout middle-school high-school and even some college to understand other people and to make friends. Middle school was the worst, because I was endlessly bullied, very depressed, extremely lonely, and constantly told that I was "weird". Before my diagnosis I remember breaking down in my school's counselors office b…

I just want to echo your story because it is almost identical to mine (right down to the incorrect diagnoses). I was bullied to the point where I developed a colossal thrombosis in my arm. We had no idea until I was 16, which is when my parents became aware of these types of issues. I was lucky enough to get off the meds extremely quickly (2 weeks as I recall, I told my mother I hated them - she took me off after not…

I am happy to hear that you had a chance to attend a new school with accepting and empathetic people.

You know, after Parmadale something similar happened with me. I ended up moving in with my Dad in Indiana and attended a new community high school out there. I was still one of the weird kids (and hung out with the Goths and Nerds), but the bullying stopped and I had a chance to be happy and to focus on schooling. I think a lot of who I am today is a result of that decision to be with my Dad for awhile and to be given the chance at a fresh start.

> I've overcome a lot less than you and I am proud of it, I can't imagine how proud you must be.

I wouldn't sell yourself short. ;p Anyone who's fighting a personal struggle no matter how big, or how small should feel good about winning. I think telling others that these battles can be won has the benefit of reminding those still struggling that they can win too. :)

I'm proud of you!

Re: It all made sense when we found out we were autistic

#198
post #106

Earlier quoted context omitted.

Mainly just making a concerted effort, when something went wrong, to go back and analyze why it went wrong and what I should have done differently. It took a lot of trial and error (like 10-20 years worth), and even today I will sometimes freeze up in social situations because all of the things I can think of to do in some situation are being flagged as "wrong" based on some prior experience.

> Mainly just making a concerted effort, when something went wrong, to go back and analyze why it went wrong and what I should have done differently. It took a lot of trial and error (like 10-20 years worth), and even today I will sometimes freeze up in social situations because all of the things I can think of to do in some situation are being flagged as "wrong" based on some prior experience. Perhaps you should wri…

Well, here's a first cut:

1. Smiling and making eye contact are both HUGE levers (but you have to be careful not to overdo it). (And an interesting thing about smiling is that it has a reverse-feedback effect: if you smile, it actually makes you feel happier.)

2. What you wear matters. It shouldn't, but it does. Read "Dress for success."

3. Spend more time listening than talking. Ask more questions than you answer, even if you know all the answers. The object of the game is not to show off how much you know, it is to provide others with opportunities to show off how much they know.

4. Help with the grunt work even when you think it is beneath you.

5. Con't complain. Ever. About anything. (This is just a first-order approximation. There are situations under which it's OK to complain, but that's an advanced course :-) And this is one of the few situations where erring on one extreme will not get you into trouble. To the contrary, if you cement a reputation as someone who never complains even when you have good cause to, people will like you more. I'm personally still working on this one.)

Re: It all made sense when we found out we were autistic

#199
I wonder sometimes if I had Aspergers and just effectively trained myself out of it. All I did was read when I was a kid. At recess, at home, etc. I just read. I didn't really understand social interactions and when I left my family and went to boarding school for high school it became apparent I was extremely socially behind.

Sitting in conversations trying to figure out a) what the heck people say, how do they even come up with something to say on inane topics? and b) when am I allowed to say the one thing I managed to find relevant? was excruciating during my early years.

Being too literal, to this day, is a problem. Struggling with social norms around "honesty", another daily issue. The idea that lying is A-Okay (particularly in business) and that there are some thoughts/ideas I'm not supposed to share due to social norms hasn't come easy. I'm lucky I've opted into a career where it's assumed I'll be a little weird (software engineer), so it's given a pass when I'm too honest, literal, etc.

For me, the big turning point was when I joined acting class my Sophomore year of HS. I basically just thought, "Oh, this is convenient! I'll just ACT like someone who is and it'll all work out!" And, yea, for the most part that's been true. The difficulty of quickly sliding in between "me" and a "social mask" at work hasn't been fun, but overall I feel like the "mask" has become me a solid 40% of any given day to great positive effect.

I still find a social situation to be a lot of work. If I allow myself to drink or do anything that fuzzes my brain at all so I stop DOING all that work of analyzing the room and figuring out how I'm allowed to engage appropriately while still being as much "me" as I can, well, then I spend probably the next 24 hours in a shame-cycle about how poorly I must've come off because I KNOW if I don't do that work then I'm dropping the ball in a million tiny ways.

Early in my relationship with my SO anytime I had caffeine we fought...because I just stopped reading him and went off on my own happy little zig-zagging butterfly path. If he didn't explicitly say he was unhappy, I was not going to pick it up.

It'd be nice to just be able to point to a diagnosis rather than have to blame myself for fucking up another social scene by letting my attention wander or drinking or whathaveyou. But, you know, I could just be a normal introvert who has to work at being social in an extroverted world...

I sort of assume it's the latter.

Re: It all made sense when we found out we were autistic

#200
post #15

Earlier quoted context omitted.

Nothing in your description is specific to Asperger's Syndrome. You sound like an introvert with some social anxiety, which is not a developmental disorder.

That pins down an interesting characteristic of the situation. If we manage to self-treat ourselves into passable normality, few people believe we ever had a serious problem in the first place! Or that they (with their actual serious diagnoses) could learn from those who applied self help and rational analysis to their own lives. I actually think some people get attached to the idea of their victimhood and helplessne…

> That pins down an interesting characteristic of the situation. If we manage to self-treat ourselves into passable normality, few people believe we ever had a serious problem in the first place!

Wow, you really hit the nail on the head with this. Just look at all the people here trying to second-guess my own self-assessment!

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