very high functioning level hides serious difficulties

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Argh I lost the middle part by accident. Oh well. Here's the rest.

My own experiences with this. 

I've experienced this in two different directions. 

One is like what is described in the thread already. Some people have seen my strengths, or my ability to fake certain strengths. They see the superficial eloquence of my writing and deny how hard it is for me, and deny my extreme struggles in language based areas. They even deny the fact that much of the time when I am not writing it's because I can't, and ignore the times when words won't come out right or grammar is reduced to simple telegraphic utterances. 

They see my apparent understanding of certain things and deny that rather than understanding ideas, I work primarily with patterns of sensory input. They remain unaware that people with severe receptive aphasia can often pretend so well to understand others words that it takes a computerized robotic voice to prove they understand no words at all. 

They see that I can write well sometimes and assume a huge combination of skills that are totally absent in me. They assume I can live "independently" or close to it and a hundred other little things like that. 

Then... there's the other side of things, which is more common for me usually. 

People generally in real life see what I can't do.  (Not solely autism-related, although more than you'd think is.) They see I can't speak to communicate. Can rarely get out of bed for long without extreme consequences. Can barely walk and not far (I use a motorized wheelchair that tips back and puts the legs up). Can't long remain sitting up (especially with legs down) without problems. Can't bathe. Can't eat unless someone else retrieves the food and hands it to me, let alone cook for myself (and often can't swallow properly either). Can't shop for my own food, need help planning meals or I just eat the same thing constantly. Can't initiate social contact except once in a blue moon. Can't get away from it either.  Have trouble (particularly when I used to walk more) with such basic transitions as walking through doorways or past lines on the floor, or just getting in and out of bed. Often can't get to the toilet in time or clean myself properly after using it. Need an implant in order to pee often enough to avoid infections.  Either have lots of atypical movements or a lack of typical movements, rarely have typical movements.  Have serious trouble with deliberate motions, thoughts, or memories, but do better when triggered by outside events. Get disoriented, sometimes even nauseated, and extremely overloaded and shut down if I venture outside of my apartment or to an extent even my bedroom. Have an often wooden facial expression despite (if triggered properly) smiling etc. briefly. Irregular sleep-wake pattern. And obviously this is all just the beginning of a long list. 

Anyway, people who meet me are often visibly struck by all or some of that. Then they have trouble seeing my strengths. They (as Jim Sinclair puts it) have never even seen my world but dismiss it as a barren rock. 

They don't see that I can possibly experience happiness, let alone be happier than most nondisabled people. They assume I must feel confined by my body. Except some also assume I lack the awareness necessary to feel such things. When I type things many people are startled in the same way they would be if the potted plant just spoke. Some actually try to give me Turing tests, not believing that my communication device is anything more than a complex computer program. (Ironically, my speech when I had it fit that computer program model far more than typing does.)

Such people may even view me as an empty husk, unaware and incapable. They don't know I am a writer and artist. They don't know that even when I am incapable of standard idea-thought or language, I am capable of other abilities that lie beneath those and that bring me the opposite of the emptiness others presume must rule my life. They can't see that when I have no command of language I often also have an extremely perceptive way of looking at both people and things. This is just outside their experience. 

In neither of these cases is it that being very high functioning hides my difficulties or that being very low functioning hides my strengths. The problem is that people map out the skills they think I have by extrapolating from only a few. Then they can't see my real skills because they are replacing direct observation with thoughts from their heads. They think they are observing a whole series of skills when really they are observing one or two then filling in the blanks with what they expect to see. 

And don't get me started on what happens when someone decides I'm one thing then is confronted with skills they would normally say go with the other thing. That can get hostile fast with accusations of my hiding either my strengths or my weaknesses, "oh so you are really one functioning level pretending to be the other", and much worse. 

Wow. I am not an NT but this reminds me a great deal of my ex-boyfriend who was. Ultimately, the relationship came to a close because he was not at a point in his life where he understood emotion at all or the experience of other people. He didn't realize that his disorder was a big problem or wasn't willing to admit to it or talk about it or make any changes to make his life easier. I tried to be there and understand as much as possible but was met with a great deal of resistance and it eventually took its toll. It's hard to help someone if they fail to realize there is a problem in the first place. I hope one day, he will. He was very highly functioning, he held a Masters degree and was very intelligent academically. However, socially and emotionally, he did not do well. His father was a psychologist so he often used that to act like he didn't have a problem or to pretend that he understood people because of his dad. This was completely untrue and he didn't take personal responsibility for those things he could improve. I think the thing that really differentiates success in a relationship isn't whether or not your partner has a disorder but how they chose to deal with it. If you avoid doing what you can to be better, even if it's small moves or steps, then you can't really expect someone to be by your side forever. It's a great thing that you finally realize areas that you need work in, I hope you do what you can to tackle it and make improvements where possible so that you will have more social opportunities.

I consider myself high functioning because I've developed a vast array of adaptations that allow me to interact and socialize with NTs. Not on their level, but mine. I've never been anywhere near normal, so I never had an illusions of passing as normal. Instead, I routinely pay for things with cash, to the exact penny, if I have to wait in line. I've computed sales tax since I was a little kid. Cashiers really like this.
Similarly, between my natural problem solving abilities, travel in a couple dozen states, and way too much time on the Internet, I can usually speak up about something for a little while, My wife says that when she first knew me I'd talk for way too long, but I've learned to cut it short.

I found it interesting to read the replies on this thread so far. It was enlightening to see that there are other people like me, who have had an outwardly near-normal life but struggle very hard inside. I was relieved to know that I am not a totally isolated case! Like some other posters here, I sometimes wish I was lower-functioning so I could have more support.

We need to advocate for support services to be made available, and relevant, to those of us whose disability is the most invisible. It is very difficult to put this message across, since we don't appear to have any problems, but we need to do it don't we?

It was also interesting to read the comments from those whose experience of life has been different from mine.

I think that it can be the case that what appears to the outside world is a million miles away from what is going on inside a person. A person might go to university to study their special interest at PhD level but might still be unable to deal with some things which most people find "easy".

I was thinking of "very high functioning" as looking from an outsider's viewpoint:
'normal' people see that you can do something as well as or better than they can, and therefore completely discount any difficulties in other areas. Just speaking well and being able to rationally describe a problem almost equates to 'couldn't possibly have a problem' for many people.