very high functioning level hides serious difficulties

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I do relate to this thread. I work in the medical field, completed my education and training with little difficulty, and have *just* enough ability to fake NT things like eye contact when it's absolutely necessary that I can muddle through, but it's a great effort. People do notice I'm "different" and I've been told I'm odd, but "odd in a nice way", stuff like that. In my area of specialization ppl kind of expect a little weirdness so I get away with it to some degree... But, my personal life is a mess because I can't "read" people to save my life, I feel emotions intensely but can't communicate them in a way that other ppl can tell that I care, and my relationships with other people have tended to be either very superficial and if not, to fall apart and I never understand WHY. It's destroyed my marriage and close friendships, and other relationships too. Yet to look at me, most ppl wouldn't guess that I have such severe interpersonal limitations or that the term "autism" applies to me.

~Kate

and i guess that's why they call it an invisible disability.

Aside from the part about the medical field profession (I work in the military), you just explained me exactly. Did I just feel a "connection"? LOL

I've had someone literally mimic ( pretty well actually) a U.F.O.- "flying saucer sound effect" ( a whistling) as he entered my house^ .

I can get a deep sense of someones discomfort around me and I believe it's the lack in "synchronizing" or 'meshing ability' at the human interface.
I can small talk a little , and it is genuine, but it doesn't run commonly deep. My whole personality is shaped from my world of special interests and a resultant theory of mind defecit . Given enough time they find we have little in common.


Eye contact has been a problem and I remember a lady spinning and keeping in lockstep with me as I would draw away from her gaze, and it angered me at the time as it seemed she was bound and determined to lock eye gaze.

I think maybe some people confuse high functioning with high IQ. My IQ was tested when I was ten, and I tested with a very high IQ. I was placed in "advanced learning" classes. Unfortunately, I could barely do basic math! I was almost held back when I was 12. And so it goes on, to my adult life. Having a high IQ has helped me a bit, I'm sure, but ultimately, I am not high functioning. I have finally been able to keep a full-time job, but I am incapable of budgeting money, or keeping up with bills at all. I have no friends outside of work, and although I believe I am well liked, I do not fit in socially at all. Throw in a little background noise, and I am lucky if I understand 1/2 of conversation. Not that I'm that much better off without noise! If I had been able to conquer the math thing I could have gotten a better education, and a better job. As it is, I will never make enough money. I will always be around the poverty line, and the only way I am getting by now is because I live with my Dad. Personal relationships are a challenge for me too, I am divorced, and am not even interested in trying to date at this point.

most of the beginning of my life up until my early 20s was the belief that "everyone else knew something I didn't", so I just went along with it.

I now realize they don't know $#!+

You didn't do anything wrong, good sir...whether or not you realize it.

Exactly the same has happened recently to me. I somehow made a situation worse when I tried to explain myself. It is a mystery how the NT mind works.

Ya know, I DO NOT get that. It seems the more I try to explain, or the more I try to get answers, no matter how nice/civil/rational I try to be, the deeper the doo-doo gets. It's like people don't WANT me to know, and don't WANT to know from me, the whys of any interaction. It drives me to bloody distraction!

~Kate

My problems were mostly ignored in childhood because my skills were there, I just didn't have access to them, so I didn't qualify for any sort of help in school. If I could have been in a class for learning disabled kids for half the day, I know I would have been much MUCH happier and better balanced, but my mother would not hear of it because I was as smart as the kids in the regular class room, or so she thought, and I might have been. Dealing with the same situations as other kids impacted me in ways it did not them. I ended up in a downward social spiral that lasted until I went to college.

Same here. I can fully relate to all of the above and all that's stated in the OP. I'm 45, and it was through my son's journey of discovery and diagnosis that I found my true self and now so much about me finally makes sense...to me.

Ditto. 47 years old I discovered I was autistic, just 4 weeks ago.

I feel that if I had been less functioning, some things in life may have been easier

Yeah, "very" high functioning threw me off for a second, too, but I think people are generally discussing just high functioning here.

I went to small private schools at first that didn't have the resources to investigate my issues - but by the same token, my first school was so small that I was the only kindergartner so my teacher worked with me one on one for the year. That lady was a saint, I tell you. Had I been in the public system at the time and in that area, I think I would have had a much rougher start. I didn't have to contend with any other kids in learning how to read.

Later, in the crowded outside world my problems became more apparent - I'm just seen as "funny" and emotionally cool.

Yeah, falling through the cracks isn't easy either.

yes, all of this is true for me

I think it's probably less about patting oneself on the back and more about a combination of other factors. 

Most people learn an idea about what functioning levels mean and then apply it to their own lives if they are autistic. So therefore if they have the trappings of "very high" functioning levels then they believe themselves to be very mild or very high functioning. 

It's almost like an urban legend. Most everyone believes it even if the facts tell them different. It's passed along by movies like Rainman where the character Raymond is described as very high functioning despite lacking those trappings like a job or the ability to hold a conversation or living outside a large institution. (Note:  Where a person lives has little to do with innate skills. I live in a state without large institutions therefore people like Raymond live alone, with roommates, or occasionally in group homes. In California OTOH many people who could have made it on their own live in large institutions, while others don't. There's no rhyme or reason to that.)

Meanwhile, some research shows that people who start with the largest number of outwardly observable autistic traits (arguably a possible measure of severity, more plausible than standard measures anyway) have the best outcomes.  (Morton Gernsbacher knows the cites for that better than I do, unfortunately.) Which completely confounds the urban legends. 

Another element is comparing one's own self-measure of one's abilities as seen from the inside to one's own self-measure of other people's abilities as seen from the outside.  Therefore one sees another person looking very obviously unusual. One then feels from the inside the effort one is spending on trying to pass for normal, and assumes one must be succeeding. One then assumes the other person looks much weirder than oneself. One then assumes oneself to be very high functioning in comparison to the other person. 

I made that last mistake in the past.  I thought myself to look completely normal because I was trying so hard. I came up with all kinds of theories as to what made me pass for normal. Never questioning that I did. But when I told other people I passed, they laughed at me. I began piecing together comments and reactions to myself over the years. I came across a medical record that referred to me as low-functioning at a time when I had had for example much better speech than I did at the time I was later reading the record. I remembered going to a proctologist (hardly an autism expert) with my parents and him immediately asking them if I was autistic. I remembered the way people treated me throughout my life, now that I had real friends to compare false friends to. I remembered people being sometimes shocked the first time they saw me speak or type. I remembered being bullied even at camps for gifted and talented children. I remembered total strangers asking my mother what was wrong with me.  And the biggest shock to my system was videotaping myself and seeing my appearance in motion for the first time in half my life. 

After piecing it together I eventually wrote this long blog post (link) about how I was treated growing up and my best guesses as to why.  Short version, I didn't ever pass. I was passed by others. That means that instead of attributing my weirdness to autism, which very few people, even professionals, knew what it looked like in those days, people attributed it to other things -- I got called weirdo, spaz, ret*d or tard, psycho, professor, druggie, space case, alien, elf, hippie, crazy, insane, lazy, gifted, computer, etc. Those are words people use when they are "passing you off" as something other than autistic but far far different from normal. Because the average person still barely if at all understands autism and this was even more true back then. And for us adults people only understand it in children for the most part and if they grasp that we grow up they usually only have one or two stereotypes to go on. So they pass us off as some other kind of weird. But being passed off is not passing. 

Another factor is fear. I used to think it was disrespectful of myself to call myself autistic because I had the same stereotype of autism everyone else did. So I always used to add atypical or very high functioning to show respect to others I thought more deserving of the label. I was so insecure I even used such terms when I had begun to question functioning level as a concept, and find myself pressured to call myself those terms just because I could write and sometimes speak. (I have a progressive autism related movement disorder that has resulted eventually in total loss of conversational speech.) Given that there are a whole faction of people out there who will call you a faker if you claim to be anything less than very high functioning Asperger's (if even that), that can be another factor. There is pressure to identify as the least autistic possible or face the ire of many parents and some autistics. (Even sometimes if they or their child would be by most terms be considered milder than you are.  It's a form of gerrymandering rather than an honest appraisal of abilities. Generally if your viewpoints agree with theirs you get a free pass to consider yourself as autistic as you want to.)

Somewhat related to the last paragraph, there are autistic people who have a whole lot of self-pity and/or self-hatred, who have a vested interest in viewing themselves as having more severe problems than autistics who are happier with ourselves than they are. So there are autistic people running around claiming to be far more severely/profoundly affected than everyone else (even if their difficulties are no more than average for a place like this and possibly even less than average). This can lead one to assume oneself quite mild if one isn't anywhere near as tormented as said people. 

(It is quite liberating to discover that type or degree of autistic traits is almost totally independent of opinion about being autistic or degree of happiness.  Unfortunately the truth goes against urban legend yet again.)

(my responses will continue in two more posts, breaking it up seemed wise given the length)

my problems were generally ignored because every time I showed any interest in anything, it was pulled away from me.

Today, I'm generally considered one of the best there is at what I do. Ya sure wouldn't have known it back then.