Do you feel penalized for being "high-functioning"

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McCann_Can_Triple
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28 Aug 2008, 10:22 am

“You’re so smart though..”

I get that all the time.


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lionesss
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28 Aug 2008, 10:28 am

McCann_Can_Triple wrote:
“You’re so smart though..”

I get that all the time.


Yep, I get that too... or "you CAN'T be, you speak too well".. yeah whatever


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28 Aug 2008, 12:16 pm

I'm aspie and would love to work with LF autie kids but it's not very likely because I'm penalized for being HF. In all actuality though I'm being penalized for being aspie/autie and not NT...HF or LF are both penalized. The parents cling to false hope that their kid will be cured and magically turn NT before adulthood. They can't bare to think about the possibility/probability there isn't any cure and the kid will eventually become an adult autie. Just the thought of it terrifies them. They feel their kid has the most chance of becoming NT if they keep adult aspies/auties away from them.

I'm glad I'm not LF because every do-gooder in town would be trying to force a cure on me. That's far worse than not qualifying for services.



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28 Aug 2008, 12:42 pm

Frankly, alba, I'd sooner die than live on a restricted diet, get dragged off to magic chelation therapies - which are very dangerous for a child, even an adult in the hands of quacks, get spoken to like an infant, be spoken for by someone who wants a replacement, and be aubject to innumerable trials and therapies on top not recieving the help and resources I'd need because money-hungry quacks and the do-gooders you mentioned convinced anyone with authority over me the people who can help are the bad guys!

I can't imagine what it must be like for those kids... Not to mention being told by your parents you aren't their real child - in loving tones, of course- and having everyone think you can't think or feel for yourself because you cannot communicate.
Add to that; the now trendy demand for "rights" to "euthanize" LFA's, or abort autistic fetuses.


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28 Aug 2008, 1:13 pm

Ishmael wrote:
Add to that; the now trendy demand for "rights" to "euthanize" LFA's, or abort autistic fetuses.


Like that lady who killed her three-year-old daughter and told the police that she hadn't committed murder because---get this---she hadn't killed her real daughter. She was only "killing autism."


...


First they came for the LFA kids, and I did not speak out because I was not LFA...


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28 Aug 2008, 2:53 pm

My brother's beatbeat girlfriend dumped her kids on us without notice and whenever I had meltdowns about the drastic change of routine and screaming kids she told me that I was too high functning to do those and should know better. When I did not want to go to certian events because they were too crowded my mother told me I was too high functining to act that way and if I didn't stop it she woudl start calling me Rainman.



Ishmael
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28 Aug 2008, 3:03 pm

Your MOTHER said WHAT?!


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dougn
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28 Aug 2008, 3:21 pm

PunkyKat wrote:
When I did not want to go to certian events because they were too crowded my mother told me I was too high functining to act that way and if I didn't stop it she woudl start calling me Rainman.

I don't think I like your mother very much.



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28 Aug 2008, 3:26 pm

MissPickwickian wrote:
Ishmael wrote:
Add to that; the now trendy demand for "rights" to "euthanize" LFA's, or abort autistic fetuses.


Like that lady who killed her three-year-old daughter and told the police that she hadn't committed murder because---get this---she hadn't killed her real daughter. She was only "killing autism."


...


First they came for the LFA kids, and I did not speak out because I was not LFA...


OY! 8O



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28 Aug 2008, 4:02 pm

Ishmael wrote:
Your MOTHER said WHAT?!


dougn wrote:
PunkyKat wrote:
When I did not want to go to certian events because they were too crowded my mother told me I was too high functining to act that way and if I didn't stop it she woudl start calling me Rainman.

I don't think I like your mother very much.


She dosen't do it anymore.



MissPickwickian
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28 Aug 2008, 4:43 pm

lionesss wrote:
OY! 8O


http://scienceblogs.com/insolence/2008/ ... f_harm.php

Unfortunately, the author of this article did not quite get that the issue here is not vaccines, but rather this mother's extreme endorsement of the extermination of autistic children. 8O

I hate overzealous Nazi comparisons, but "ultimate fix" sounds a whole lot like "final solution" to me. I know this is an intense example, but this autism-killed-my-baby-before-it-was-dead philosophy makes me very nervous.


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28 Aug 2008, 5:42 pm

nuthinbutluv wrote:
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.


I do think you make a good point, but it's hard not to take a personal attack personally, especially when it's in front of your colleagues and boss. I don't think me being a hurtful reminder justifies her turning around and being hurtful to me. I'm tired of feeling I need to apologize for who I am. It seems like that explains her behavior, but doesn't excuse it, you know?

I guess the other thing that bothers me is that this does extend into her professional role. It's not just that her attitudes hurt me. She's a case manager for people with autism and I've heard her say some things that left me speechless. (That a college-educated, but nonverbal, young man with autism could speak if he wanted to, for example. Like he's being stubborn or lazy).

She doesn't have a degree, but got the job because she started a network of parent's autism support networks. I can't question her qualifications or attitudes for a number of political reasons, though. It's a delicate situation and I hate those, so thank God I can vent here! I appreciate you guys for listening ...



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28 Aug 2008, 5:47 pm

PunkyKat wrote:
She dosen't do it anymore.

I'm glad.

My mom has pulled the "you're not that disabled" thing, but not with such offensive language.



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28 Aug 2008, 6:17 pm

I have noticed the same thing when I try to talk with parents of lower functioning children. Those of us who don't face what they do, apparently, simply cannot understand.

In part, that is valid. In part, however, it is because they as a group do not want to hear what we have to say.

I think AS and HFA provide a lot of insight into what is really going on in the minds of LFA.

But the AS/HFA community has basically come out against the goals and beliefs of parents with LFA children. Face it, no one likes to be told they are going about it all wrong. No one likes to be told that after hours and hours of research and thought, they have come to the wrong conclusion. Especially when they feel a lot of conviction for those conclusions, and have anecdotal evidence to support them.

So I think the walls are up before a word is even spoken.

And that wall is braced by the idea that we "cannot possibly understand."

And, yet, I think you all do. Me, a parent, maybe not really. But you, having a similar life experience to their child, albeit to a far lesser degree, actually do. Making it a real shame that those walls of essentially political thought exist at all.


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28 Aug 2008, 6:26 pm

There seems to be a lot of resentment, even among autistic people themselves, about varying levels of functioning. I'm relatively high-functioning but despite that I still find plenty of things extremely difficult. It's not easy at times being anywhere on the spectrum and people questioning your diagnosis because you appear "normal" is annoying and potentially stressful.



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28 Aug 2008, 6:31 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.
release the fire ants! :evil:


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