Do you feel penalized for being "high-functioning"

Post Reply New Topic

Same for me. This is one of the reasons why I'm not sure if I should tell anyone in real life that I have Asperger's syndrome. I have bad experience in the past from similar situations.

For example, I'm dyslexic, but by paying good attention in class and memorizing stuff and working really hard on anything that had to do with reading or writing, I was able to do really well academically. People see the outcome (my good grades or whatever text I write), but they have no idea how much work there is behind it. They have no idea how many times I have to re-read everything I write and look up simple words in the dictionary to find out how they are spelled etc. I'm a perfectionist, so I don't send/hand in text that I know is full of mistakes... I do my best to fix it first. When I've told people about being dyslexic they didn't believe me. "You did so well in school, you couldn't possibly be dyslexic!"

I've had the same problem with physical disabilities ("but you look so normal!", "but you're so young!"), with my hearing ("you hear some things, so you can hear everything else too") and with mental issues ("but you seem so normal"), so I'm not too optimistic about getting any better response if I explain AS. I am highly functional, but people have no idea how much effort it takes for me to get through the day and how draining it is to live like this. They tend to have a picture stuck in their head of the most severe cases of everything and anything less severe is perceived as either faking it or making up excuses.

So I'm stuck being too "defective" in several ways and too high functioning to get help or as much as understanding or consideration. Apparently my "defects" are all in my head and I'm just not trying hard enough or being too stubborn to change. So yes, I feel penelized for being high functioning and for trying hard.

I can relate to a lot of the things discussed here. It's very much a lose-lose situation for me because of how high-functioning I am in many areas. On top of that I have other problems in my life that complicate things even further. The harder I try the more tired I get. I'm often burning out or having meltdowns. There are times I've been so stressed out that I am at timer rather low-functioning in several areas because I can no longer function at full capacity. Or my usual capacity, as I don't think I've been able to function at full capacity for many years.

I get called lazy by the people who are supposed to be helping me. They seem to think that because I'm high-functioning that I can deal with everything myself. I think they're the ones being lazy by not helping me. I work myself into a state of mental exhaustion (because I've been called lazy I'm trying to show to them and myself, mostly myself, that I'm not lazy, and because they've witheld their help) and because I'm too stressed and burned out to function on many basic levels because of overworking myself I get called lazy again.

It seems that no matter what I do I can't get the right kind of help. Several times now I've been through a one-size-fits all system and approach at dealing with people with disabilites and have fallen through the cracks each time. I won't even talk to the people at Mental Health here anymore. It seems that if I wanted real help, services tailored to meet my specific needs, then I would have to pay a ton of money to get that help. I get tired of it after a while, but what else can I do? It seems now that I might have been better off without their help as they set me back further and wasted a lot of my time.

The way I see it now, I figure that if I'm going to get the help I need then I'm going to have to do it myself. Even though many of the things I need help with I probably can't do myself and is why I was asking for help in the first place. I'd rather not have to deal with other people and all the stress they bring if I don't have to.

Yes. I told a friend that I'm autistic and he didn't believe me at first. Then he started to explain it to me in the classic 'pity my poor family member' tone.

I got mad at him.

A week later he made this nice bowl for woodshop class. It had a nice texture and I kept touching it/ feeling it. The texture made me happy so I started goofing around randomly and making odd noises. And then he said:

"Wow! You really ARE autistic!"

And basically people tend to not believe me unless I do something like that. Which makes me mad because I work so hard to keep friends and when they don't believe, I know that they don't realize how hard I do work.

no

Yes. I've only told a couple of people, but already regret doing so. All it's accomplished is everyone trying to come up with an explanation, anything, that dismisses my suspicions of AS. My Mom has tossed out theories from ADD to Bipolar Disorder, while my girlfriend was trying to convince me that it was just Crohn's Disease. So now, I'm constantly having to refute these armchair diagnoses from people who can't possibly know what's going on in my head, but sure as hell like to think they do.

I don't know that I agree with that.

I know you're probably just using that as shorthand, but it could, to a casual reader, perpetuate the stereotypes that:

1. Everyone in the community in question who is autistic, is considered AS or HFA. (I have never had 'high functioning' appended to any diagnosis in my life. Once 'low functioning' and usually no functioning level at all is attached. There are several others in the same boat.)

2. Everyone who is a parent in the community in question, is the parent of a child who is considered AS or HFA. (In reality, many have children designated by professionals as LFA.)

3. Parents with children considered LFA, have goals and beliefs in opposition to the above community, and are not part of the above community. (See #2.)

4. Parents who have beliefs that are in opposition to the above community, have children designated as LFA. (In fact, many have children who would be designated as HFA or AS, or without functioning label at all. However, I have noticed that often such a parent with a child who would be considered by most to be high-functioning, will claim their child has to be more impaired than the children of parents who disagree with them, because otherwise the other parents would not disagree with them.)

None of which are accurate depictions, but which do (probably inadvertently on your part?) fuel in some people's minds the idea that perceived functioning level determines belief system. I have not actually seen that it does.