Do you feel penalized for being "high-functioning"

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Let me preface this by saying I dislike the terms "high" and "low-functioning," but do you feel people are sometimes more critical of you if you find ways to compensate for negative Asperger's traits?

I'm chair of an interagency planning committee for a seminar about housing and independent living arrangements for people with autism. I invited a coworker who coordinates our autism program and is the parent of a son with AS to our first meeting today. There were some heated words. Long story short, we were talking about ways to educate housing professionals about autism and I said one of the best ways was to include self-advocates as speakers, then suggested a few.

She got really upset and said people like me should not represent the spectrum because it will give people the impression we're "all like that." (Bear in mind some of the people I suggested are nonverbal and use facilitated communication--I was suggesting we represent a range). She then went on to analyze me a bit (incorrectly) and seemed to insinuate my challenges are just personality quirks. She also said at points during the meeting she feels autism is over-diagnosed and the "new trendy diagnosis." I felt like she was implying I'm just faking it. (I overheard her saying as much to another coworker after she initially met me, too).

It makes me upset to be misjudged just because over time I've found ways of compensating for some of my social deficits. She has absolutely no idea how hard I've worked to get where I am. She has no idea how much of a struggle it is for me to keep it together throughout each and every workday. It seems like the more you achieve, the more some parents of people with autism resent you or become hostile.

I am in no way saying it's an easy life for people who have difficulty communicating and cannot live independently. It's unfortunate from a social services standpoint, though, that "higher-functioning" people who don't fit sterotypes often fall through the cracks and don't qualify for any services. There seems to be an attitude that if you're articulate enough to advacate for your own needs, you don't need the help anyway.

I don't know about a social services perspective -- but people seem to get very angry with me when I do things in ways they don't expect. I doubt they'd do this to a "low functioning" autistic person.

There is this insane assumption that if someone appears mostly normal, all the other aspects about them that you don't like should be considered "rude" or "mean" or "uncaring". This is highly hurtful, and I don't really think it can be escaped. People just want to assume things about others instead of getting to know them.

I so hear you, people rarely cut me slack!! And they don't realize how hard I have had to struggle with lots of things in my life... and the struggles will stay with me for the rest of my life.

Yes. Because I speak well about the things I'm comfortable with, and know stuff about, people expect me to speak as well the rest of the time. Also people seem to thikn I'm just shy/awkward... speaking of awkward, awkward is an awkward looking word... rather than actually having a real condition.


It really is lose lose for me, too "defective" to have it easy, too functional to get much help or sympathy


Jeff

If I were physically handicapped, nobody would BLAME ME for it. But this, whatever it is they think I'm missing, I get DESPISED for it. It is a crushing weight. And I'm not even convinced I'm doing anything wrong, just saying unexpected things, or not....? I don't even know what it is. But I'm sure I deserve to be loved, not hated.

I really don't see the social difficulties from the different 'wiring' of the aspie brain as much different from having diffculty walked because of a malformed knee or ankle.


I'm stick in the middle, the same way I am with money.... too much income for state aide, not enough to really be 100% ok..


ugh... now I'm all frustrated and angry again

Jeff

I really wish there were some EXACT explanation of what this "difficulty" or "social awkwardness" is. I get the not looking people in the eye. I think its stupid, but at least it is specific. How many other things are there? How are you supposed to know how long, or how much....?

Just seems to me that people have some undefinable meter that they just flip out and choose to look down on you if you do something that registers off the meter (either too little or too much).

I really don't know if I am missing "social cues" as they say, or if I am just dismissing them because they make no sense.

I don't know......... and most NTs think we're the weird ones, they're the ones that have all these illogical unspoken, unwritten rules for what should be simple conversation. I talk, you answer, you talk, i answer, we try not to interupt.. shouldn't have to be a mind reader for it but with NTs it seems like they expect me to read their minds



ugh...


Jeff

yeah, that about sums it up. ugh is right

Blueroses, I wanted to comment on what you said "It seems like the more you achieve, the more some parents of people with autism resent you or become hostile". I do not have autism, but my much younger teenage brother does. I think that maybe sometimes parents have those feelings of resentment because you can or have achieved things their own child may not be able to. No one wants to think about the unfair limitations their child has, and sometimes those reminders can be painful. So don't take it too personally.

Your description indicates to me that your co-worker is ignorant and prejudicial with regards to persons characterised by autism. She's on par with someone who thinks hearing impaired people who can lip-read are simply diagnosed as hearing impairment because hearing impairment diagnoses are some kind of fashionable fad.

I definitely think that higher functioning AS people are defintely criticized for being higher functioning. Because AS is such an invisible disability, I think it's easy for people to say we're faking it, or we have personality quirks, or whatever. People criticize what they don't understand. If you don't understand why someone does something that's a little scary, then you say it's fake or whatever.

I think that NT people can be ruder and have less of a clue than us, sometimes. They stare, think it's okay to say inappropriate things, and whatever else. I would never do those things. I have a coworker that I swear at times has way less tact than me, but I'm the autistic one with social issues. Weird, huh?

I think that in my workplace, it's usually understood that I have a disability (I work for an adult service provider who works with people with disabilities) so it's okay. It's the public and employers that sometimes has a hard time wrapping their brain around the fact. It's also sometimes hard for my family to get. I look normal, so I must be normal, right? I should just be able to be like everyone else and get over all this weird stuff, right? Nope. Sorry.

yeah...... I've been told to grow up, get over it, quit acting like that, "just talk it's easy" and other nonsense more times than i care to think about.

most NTs are very rude about AS symptoms


Jeff

being LFA gets just as much ignorance.,
it's obvious to others,but they rarely ever understand unless they are trained autism staff who want to understand,or other autism experienced people.
am LFA and have high complex needs,because of this am deal with both nastiness and ignorance off learning disability staff every day [social services],the've known am for years,have had a lot of training with autism specialists-who worked with am for a long time, and it still doesn't get through.
because of their ignorance,they allowed am to be sexually abused in front of them by other residents a few years ago,they physically abused am themselves,and have had a lot worse,all because of how they see am.


blueroses,
dont give her stupid ignorance any respect by being bothered by what she says,she sounds horrible-if she thinks are faking anything,does the opinion of a really ignorant sounding lady-whos got little education of autism or own past beyond a few stereotypes mean anything? it's just useless crap,and shows how silly she is.
Am would rather have HFautists-who have understanding for all autists speak for am,than a outsider/non autist who shows no understanding for autists,and knows very little about autism.

Yeah me too, I can't tell you how many times I have been told to "get over it" or to "grow up". I have to say, without getting all that sappy I am glad to have found this place because at least many of us (if not most of us.. there are a few "NT"'s here but they are the smart ones ) are in the same boat. I have been on plenty of different online communities that is designed for other issues I deal with (like being under the spectrum isn't enough??) and I either keep getting kicked off or called a troll because I may have said something "inappropriate". Just so not fair and I admit I have a TERRIBLE temper and ignorance is one thing that frequently triggers it.. however I am not always 100% blameless because if someone says something downright ignorant, I will not stand for it... so they have seen my worst side.. another strike against me! Oh well, I am starting to just pity these ignorant people... because many times if they are narrow minded now, they will stay that way unless Hell freezes over. Its very difficult to educate people like that.

lioness, I like your manner of typing/expressing, it's very pleasant for me to read and easy to follow... but then again i see many traits in it that remind me of my own...



and thats my totally off topic post for the moment

Jeff