Do you feel penalized for being "high-functioning"

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lionesss
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27 Aug 2008, 9:05 pm

Thank you Jeff, I like yours too and its great to know that someone can relate to me

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MissPickwickian
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27 Aug 2008, 9:07 pm

Parents of LFA kids always think that we're trivializing the autism diagnosis. For understandable but not fully justifiable reasons, they believe that autism can never have any positive aspects, and the idea of anyone gaining good qualities from autism enrages them.

They, like many people who have suffered, want to be acknowledged 24 hours a day, seven days a week. There is also a human tendency to create hierarchies of suffering and argue over the bragging rights to said suffering (a similar problem arises periodically in the Holocaust survivor community. Those with tattoos tend to feel themselves superior to those who were "just" in ghettos or in hiding. This sounds absurd to the rest of us, but to them it's a REALLY BIG DEAL and has been a REALLY BIG DEAL for more than half a century). There is some vanity there, sadly.

So, how dare you say anything good about your condition, and how dare you say you've suffered. Kind of a catch-22.

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CelticRose
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27 Aug 2008, 9:19 pm

I often get a similar "you look normal so you must be faking it" attitude about my rheumatism. This has made me hesitant to "come out" about my AS, even to my friend whose brother is an Aspie.

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Ishmael
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27 Aug 2008, 10:13 pm

oh, yes! All the time! Because I am intelligent, everybody keeps pushing me and just expects me to "overcome" aspergers - as far as they're concerned, it's just a personality disorder, not a physiological issue. Nobody notices until you can't stand it anymore, but then all they see you as is weak for not being able to control something they can never, will never experience nor understand. It gets annoying.

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vt420
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27 Aug 2008, 10:19 pm

Ishmael wrote:

THIS

Ishmael
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27 Aug 2008, 10:28 pm

vt420 wrote:

Ishmael wrote:

THIS

Sorry? I don't quite understand.

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pandd
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27 Aug 2008, 10:33 pm

Ishmael wrote:

vt420 wrote:

Ishmael wrote:

THIS

Sorry? I don't quite understand.

I think "THIS" is intended to indicate that your comments represent the views of vt420 on this issue.

Ishmael
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27 Aug 2008, 10:41 pm

Ah.

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earthmonkey
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27 Aug 2008, 10:51 pm

blueroses wrote:

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.

Yeah, I agree with a lot of this. Seems like the woman in question is going off of stereotypes.

Also, a lot of people (such as people in general and special education) have difficulty understanding how, say, someone who is highly academically capable would have difficulty with learning "simple" tasks, like budgeting, laundry, cooking, and dishwashing, and on other daily living tasks (like preparing microwave meals, washing, dressing, etc.) take a very long time to do.

It's like they get the concept of varying skill profiles, but only in a very narrow, stereotyped manner (such as a music savant, or a science nerd who's "a bit shy") and try to cram me into one of the narrow boxes. Hey - I may be autistic, but I do need breathing room!

So the people responsible for evaluating me only see me in a school setting, which is where only a fraction of my difficulties occur (sure, lots of sensory overload, speech shorting out, and stimming, but I academically succeed so I surely am just not "trying hard enough").

Still, even with this narrow glimpse of my life, they acknowledge I am autistic and the psychologist even expressed that he was "very concerned" about me living on my own in a few months from then for college, yet nobody will DO anything to try to help me - no tips, no resources, no referrals, no education, nothing (they won't even finalize my diagnosis!) Yeah, there's definitely stuff screwed up about all this.

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Danielismyname
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27 Aug 2008, 10:52 pm

No, no I don't.

chocoholic
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27 Aug 2008, 10:55 pm

I feel this way at my job sometimes. Because I work in customer service, I pretty much have no choice but to suppress my autistic tendencies there. Due to this, and also the fact that I am very high functioning in certain aspects of the job, such as task related work, they often treat me like I'm higher functioning than I really am in other areas where I'm not as high functioning, such as assisting customers and multitasking. They seem to think I have a great ability to do such, as I get reprimanded on occasion if I'm not performing to their standards. What they don't realize is that I have to give every ounce of mental energy I have just to keep up with basic standards, and that just because I can do something I have difficulty with for a couple hours, doesn't mean my mental reserves can withstand that level of functioning over the course of a long day without autistic tendencies starting to show.

Sometimes it's a damned if you do, damned if you don't type of thing. If you have the appearance of being low functioning, you tend to get treated as such even though you may be an otherwise intelligent person or high functioning in other areas, and if you have the appearance of being high functioning, even though you may in actuality be lower functioning in certain areas than how you appear, you may be treated like and expected to be more capable than you really are. So it's like being caught between a rock and a hard place. Appearances can be deceiving at times, and that's especially true of the autistic spectrum. People just don't seem to realize that, though.

earthmonkey
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28 Aug 2008, 5:31 am

chocoholic wrote:

Sometimes it's a damned if you do, damned if you don't type of thing. If you have the appearance of being low functioning, you tend to get treated as such even though you may be an otherwise intelligent person or high functioning in other areas, and if you have the appearance of being high functioning, even though you may in actuality be lower functioning in certain areas than how you appear, you may be treated like and expected to be more capable than you really are. So it's like being caught between a rock and a hard place. Appearances can be deceiving at times, and that's especially true of the autistic spectrum. People just don't seem to realize that, though.

Yeah, I think this gets it pretty much right on. The stereotypes and unfair treatment from the outside are about equivalent, and often becomes a "grass is always greener" situation.

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2ukenkerl
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28 Aug 2008, 6:22 am

pandd wrote:

Ishmael wrote:

vt420 wrote:

Ishmael wrote:

THIS

Sorry? I don't quite understand.

I think "THIS" is intended to indicate that your comments represent the views of vt420 on this issue.

I was going to say much the same! People have ALWAYS acted like it was easy to change. I never knew it was because my BRAIN was different. Still, it was always interesting about the disparity of knowledge, etc...

tomamil
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28 Aug 2008, 7:22 am

lionesss wrote:

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.

that's the funny thing. the person in question from the original post actually showed how uneducated she was about the whole spectrum. she actually turned out to be the bad ignorant person in eyes of those who better understand autism. now as narrow minded she obviously is, people so hostile are never open minded, she will never realize that in reality it was her who was the bad person, not the one she was accusing.

so she, the one who was wrong, will believe she was right, and the one who was right will feel bad about the whole situation. seems it works that way most of the times.

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Pook
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28 Aug 2008, 7:24 am

Yeah. People forget how deceiving appearances can be.

I probably couldn't keep my checkbook balanced if someone paid me to do it and dh has learned that the hard way. He doesn't even bother to ask me to do it anymore. I know on the job people would believe I could quickly learn and perform whatever task as quickly as any other reasonably intelligent person. Never happened

Erminea
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28 Aug 2008, 8:57 am

Hi there,

A bit off topic and I do not know what to say. You guys are giving me so much insight. It's so amazing that some of you are writing my exact thoughts and feeling here. Stunning and a bit confusing at the same time. But....

Thank you.

Best of luck to you all,
Ceesjan

P.S. I do feel a bit penalized, yes..
Vt420, said it spot on, I think, by saying:
'It really is lose lose for me, too "defective" to have it easy, too functional to get much help or sympathy'.

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