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I an aspie. We don't use the phrase "suffering from autism." We say "is autistic."

Personally I agree with you. I always used to say "was autistic" until an administrater where I work corrected me one day about a year or two ago and said that the socially acceptable phrase is "suffering from autism." I then had to make a point to say "suffering from autism" all of the time because I didn't want to offend any of the children's parents. I think that this would be a good topic for the Autism board, though. I think that ultimately, those who have autism should be the ones making the call.

Sub

My institution has instructed me to refer to the children I work with as "children suffering from autism." I cannot ask the children what they would prefer to be called because I work with a very low functioning population with limited communication skills. They do not have have the cognitive ability to understand such a question. So, I ask you on this board, What do you think that the socially appropriate way to refer someone with autism should be?

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Permit me to ask you: do you believe we should refer to minority groups as if that minority status means they're defective? Do you think we should refer to left-handed people as "suffering from left-handedness?" What if doing so made right-handed people feel better about this aberration in their midst? What if this furthered the view that left-handed people are sinister and must be trained out of this aberrant favoring of left over smugly-titled right?

I know you are dealing with children who are further from the norm than I, who might not communicate verbally and sometimes resort to inelegant, personally injurious strategies to cope with the world around them, but we are still referring to human beings with a genetically-determined difference in how they relate to existence. Left-handed people don't suffer from being left-handed. If anything, they suffer from a world designed for right-handed people in everything from scissors to notebooks to car controls, which statistical analyses suggest result in a higher accident rate and a slightly shorter average lifespan. To marginalize the left-handed population, tying their favored hands to their sides and trying to train them into right-handedness under the claim they are suffering from some removable illness, would strip them of their dignity -- and all so the portion of the majority offended by left-handedness could feel better about the world and about themselves.

I suffer from things like sensory overload, a world in which charm often matters more than one's ability to perform a task, and people who assume the inability or refusal to stay with their method of communicating through low-content prolonged speech means I am "some fucking retard." My coping strategies have become more refined over the years, bringing with them a higher level of externally-perceived functioning, but such refinement was developed voluntarily. Being forced by others to look them in the eye or whatnot has made them happier to deal with me, but forced *me* to retreat further into my own head and detach myself from the outside shell of fulfilling the most basic of interpersonal requirements.

It's good to teach a left-handed kid how to better function in the world, tricks for writing in spiral notebooks (back to front, and use fast-drying pens -- erasables smudge) and the ease of using lefty-designed scissors and whatever else. It is not good to prevent them from using their naturally dominant hand because *other people* have a problem with it, call left-handedness a "condition" and "disease" which must cause them such suffering, poor dears, and train them into conforming to a set of external expectations which are perfectly arbitrary, if you get outside the box for a while and think about it. It's the same for autism. Help us learn to cope with the world if we need help. Help us find elegant solutions to inevitable problems, ones that won't cause us or others real harm. Help us fight stereotypes which would marginalize us and keep us from living fulfilling lives on our own terms. Help us find or create places for ourselves in the world. Don't try to train us out of the essence of who we are. Don't force us into trying to meet a shitload of outside expectations which are arbitrary and which we will likely never be able to seamlessly replicate. And please don't talk about us as if we're diseased and must be cured -- even if it makes the majority feel better.

Autistic is my top recommendation. I'm autistic, I'm female, whatever. "Person with autism" is awkward and introduces the erroneous concept that autism is one separate thing and the person is another, a notion I believe to be false. "Person suffering with/from autism" is demeaning and offensive. There is no redeeming element in this manner of address for the autistic him- or herself, only for the NTs around them.

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So, I ask you on this board, What do you think that the socially appropriate way to refer someone with autism should be?

i just say "i'm autistic" or "high functioning autistic"... or most often "i'm just a spazz and i'm a bit flaky, don't mind me... i'm gonna go spin in that corner"...

i hate PC crap and socially acceptable ways to say something. i don't particularly like "suffering from" because i don't think i AM suffering. so that is just incorrect.

my boyfriend, if explaining to someone why i'm flipping out at something silly, tells them i'm just a spazz, too. lol. i like that. i figure it means he's comfy with the way i act.

abifae

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I'm pretty open about my aspi possibly because in only know it officially for bout 1/2 year now.

I tell people that i have Asperger, and that that is part of autism spectrum.

More important though, i tell them how i see and have learned what it is for me. Mostly symptom wise like 'if you see my sitting in my corner all glassed eyed, you better leave me be or just show silent affection.' and 'I sometimes might come over quite aggressivly I don't mean it that way, trust me if i were angry with you you'd know for sure'

But in all honesty, i don't care much for naming conventions and such crap. A name is but a name and open for misinterpretation, certainly if you're sticking terms like syndrom and disorder to the name. so i have to conclude you question with:

I am asperger, I have autistic traits, all in all my brain functions differently if compared with 'normal' people, but then again what is normal...

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my best friend has asperger's. he says 'i have asperger's', or 'i am autistic'.

his problem is not that he suffers in any way because he is autistic, his problem is that he is expected to do things that "normal" people do and complete things just like normal people would. he graduated from college in 5.5 years rather than 4 because profs had to give him whole years to do some classes rather than just a semester, and so on. it had nothing to do with an inability to learn, just to do it so quickly. he's one of the smartest people i know, he majored in computer science, and has to work at target because no one will hire him.

what he suffers from is the social stigma attached to his behaviors as a person wtih asperger's. he doesn't look people in the eye. it takes him longer to say what he wants to say, and to say the right thing. sometimes he has to write it out and review it several times and give the person a letter, and that is just how he communicates.

he isn't at all flawed for being autistic, he is different from the norm because of it. just as lmnop pointed out, things in this world are designed for right-handed people, with the right-handed people being the majority (never mind that i know several left-handed people).

people make fun of him and write him off as being a weirdo, adn it is so unjust. when i was in turkey and on the bus with some classmates, one of my classmates started making fun of my friend. VERY BAD move in front of me! i told him off in front of the whole group and got a standing ovation.

my friend is so worth getting to know, obviously being my best friend and all. if i hadn't pursued our friendship it wouldn't have happened because of his different social skills, but i figured he was just different and went after our friendship anyway. i'll never regret it.

so yeah, after all my rambling, he says 'i have asperget's', or 'i'm autistic', and doesn't think another thing of it. if you ask him, he only suffers from how the world treats him, and not from anything internal within himself. it isn't anything that hurts him except in the outside world.

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My name is Wifezilla....

I have been suffering from Lefthandedness for 43 years.

I can't use a manual can opener without making a mess.

I have a dent in my thumb because I have to hold scissors upside down.

I am 10% more likely to have an accident.

The PAIN...the HORROR....the...the...Sarcasm! LOL

Actually I enjoy being a lefty. I like the puzzeled look on people's faces when I write things upside down and backwards and it is more legible than their regular handwriting.

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Well, this comes out of the well intentioned movement espousing the cause of not letting a disease define someone.

This philosophy can be helpful to someone newly diagnosed with a disease or who is struggling to come to terms with an illness.

However, it can also be carried to absurdity. Certainly someone with a hangnail, is not appropriately labelled as a hangnailer, and it has essentially no effect on their life.

I, having asthma, probably would not be helped by being constantly referred to as "AM the Asthmatic", and after a short period it was easy to realize that the disease didn't define me or unduly limit me. Still, it is not wrong to refer to me as asthmatic in relation to my medical status.

On the other hand, for someone who is profoundy autistic, unable to care for themselves and minimally capable of communicating, no honest person could argue that their lives are not defined by autism. It is correct and proper to refer to someone as autistic, just as it is correct to say asthmatic. I strongly disagree with saying they "suffer with autism" unless that it is an obvious and persistent state.

a.m.

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part of the problem here is what is considered acceptable and unacceptable will differ from person to person. there is nothing as empowering and affirming as very carefully listening to someone's harangue on usage of the correct term (for 15 minutes), memorizing the logic then proudly using the newly-learned correct term in front of someone else then getting your ass ripped to shreds.

*shrug* you ought to hear my wheelchair bound friend (who is a disability rights activist) go one about politically correct terms and their relative unimportance (in her view)

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There is a political aspect to this. There are strong pro and anti cure factions in the autism community. The curbies are usually parents who are pissed because they ordered a normal child and got an autistic one instead. From the POV of the autistic community, "cure autism now" is a holocaust in progress. We don't want to be cured and we don't want other autistics to suffer the kind of abuse we did as various institutions attempted to make us fit into given molds.

If you boss is making money off the cure industry, he's not a neutral party in this and it's in his interest to use language to sell his service. If people are not suffering from autism, it sounds like he's out of a job.

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I have heard people get lambasted for failing to use the *right* one (as defined by the specific lambaster who is lambasting them at the time) for doing their absolute best to be polite, friendly, and non-stupid. This sends the unfortunate message "people who are/have _____ are crazy bastards who I should avoid being around at all costs".

But I think we all agree that identifying someone else as perpetually "suffering" is grossly inappropriate unless that person chooses to self-identify and be identified as such? According to the nomenclature preferred by subterranean's employer, I would not be identified as myself (however "self" is defined), but as a sufferer. Why should presumed suffering be assumed as one's defining trait? I don't see how "suffering from autism" could be considered respectful of the autistic person by any reasoning.

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What do you think that the socially appropriate way to refer someone with autism should be?

You've gotten answers more suited to the question, but I'll have to admit my first response was

"By their name?"

Here's the thing. A lot of times it will come up in discussions about my job. referring to the child/children by their name is a breech of confidentiality. Besides, most of the discussions lately are just about how stupid the no child left behind act is, but the population as a whole comes up. But, it also comes up when people ask about my injuries I get at work, (bite marks, scratches on the face, bruises, punches, etc.) I just feel kind of ridiculas saying "children/child suffering from autism" because though some of the kids do appear to be suffering, some of them do not. I used to say is autistic, I just wanted input from the people who read this board.

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My name is Wifezilla....

I have been suffering from Lefthandedness for 43 years.

I can't use a manual can opener without making a mess.

Actually I enjoy being a lefty. I like the puzzeled look on people's faces when I write things upside down and backwards and it is more legible than their regular handwriting.

I was actually supposed to be lefthanded, but, my older sister taught me to write with my right hand before I went to school. So, whenever I learn anything new, I use my left hand, ex: can opener. I twist my arm around and use my left to open cans manually. But, in school they asked which hand we wrote with to determine which hand we learned to throw and catch with in softball, so, I throw with my right hand usually and catch with my left, I can actually write with both hands now, when I fire a gun I have terrible aim with my right hand and great aim with my left. I'm just messed up.

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so yeah, after all my rambling, he says 'i have asperget's', or 'i'm autistic', and doesn't think another thing of it. if you ask him, he only suffers from how the world treats him, and not from anything internal within himself. it isn't anything that hurts him except in the outside world.

exactly!! i like being autistic in a lot of ways because i enjoy the way i see the world. i like that i tend towards honesty and i like that everything still holds wonder for me. i even do my job better because of it (one of my favorite managers is OCD and she and i are the main ones who deep clean the restaurant on a regular basis lol). some parts of my job are harder because of it, but everyone has difficulty with some parts of any job, so it doesn't really matter.

all that stresses me is the way the outside world deals back and the stress of dealing with people who are not honest and who i can't "read" correctly.

granted, that's still a helluva lotta stress lol.

abifae

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I was actually supposed to be lefthanded, but, my older sister taught me to write with my right hand before I went to school. So, whenever I learn anything new, I use my left hand, ex: can opener. I twist my arm around and use my left to open cans manually. But, in school they asked which hand we wrote with to determine which hand we learned to throw and catch with in softball, so, I throw with my right hand usually and catch with my left, I can actually write with both hands now, when I fire a gun I have terrible aim with my right hand and great aim with my left. I'm just messed up.

me too. i was forced to write right handed, but for a lot things i'm lefthanded, and if you just hand me a pencil, there's no tellign which hand i'll start trying to use before i remember that i've practiced mostly right handed and eventually i'll end up with it in the correct hand.

but when i draw, left handed for details, right handed for larger, less precise stuff.

abifae

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Here's the thing. A lot of times it will come up in discussions about my job. referring to the child/children by their name is a breech of confidentiality. Besides, most of the discussions lately are just about how stupid the no child left behind act is, but the population as a whole comes up. But, it also comes up when people ask about my injuries I get at work, (bite marks, scratches on the face, bruises, punches, etc.) I just feel kind of ridiculas saying "children/child suffering from autism" because though some of the kids do appear to be suffering, some of them do not. I used to say is autistic, I just wanted input from the people who read this board.

Just some thoughts:

"Oh my gawd! How'd you get so bruised up?"

- "I'm a teacher. One of the kids went ballistic. It happens."

"Hon, those are TEETH marks. What happened?"

- "Well, you know those times when you just HAVE to have something to eat?" or

"You that saying guys have, about 'coyote ugly'? It's not so funny anymore."

Or even "I teach in the Special Ed. program; some of the kids funnelled into it really don't have

the resources to deal with even that classroom environment." There's no need to get into the

specific diagnosis, and besides - most people assume the cuts and bruises are from your significant

other abusing you anyway.

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To explain injuries, I always use "I take martial arts classes." Or, if a particularly bad injury, "I was in an accident during martial arts class." (Both of these are actually true for me, though.) Works for bite marks in addition to bruises and scratches, at least for some martial arts. Not sure which one but I bet Krav Maga uses bites, since they're extremely pragmatic.

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Autistic is my top recommendation. I'm autistic, I'm female, whatever. "Person with autism" is awkward and introduces the erroneous concept that autism is one separate thing and the person is another, a notion I believe to be false. "Person suffering with/from autism" is demeaning and offensive. There is no redeeming element in this manner of address for the autistic him- or herself, only for the NTs around them.

I found that some people belive ethat autism is some outer layer in which some "normal" child is underneath. i dont happen to believe that either. "im autistic" is just fine in my book. but of coarse i cant speak for others.

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I'm thinking a particular friend of mine would go ballistic is someone referred to him as a "person with homosexuality." But this isn't necessarily relevant to the discussion at hand.

This seems to come down to one question: is autism a disorder, or part of one's core identity? If the latter, then both "suffering" and person-first terminology don't quite seem to fit. If the former, then we can quibble 'til we're hoarse.

Oh, and yay! Mafia ninjas!

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AO- yes, my friend is also a computer nut and spends all his time online. he has a degree in computer science too. as i said, asking him about autism you'll just get 'i'm autistic' and you won't get any complaints that he's suffering, just that the outside world sucks. if you ask his parents, he is suffering greatly. i think his perspective on the issue is more valid than that of his parents.

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What a very cool and interesting thread...

I just love your insights and thoughts on this, lmnop. Thanks for taking the time. I totally agree...I do not "suffer" and neither does my son and I don't want us to be referred to this way. I understand what VE was pointing to, though...I do think this language comes from that "cure autism now" faction...in order for us to "cure" autism, those with autism have to be suffering from it. Me? I see it as an intrinsic part of who I am, of who my son is. No curing, no suffering.

As for the autistic/have autism thing, I deal with that issue in my research all the time. I work in the area of literacy research with children on the high functioning end of the autism spectrum and there are those that dictate "say autistic because it's part of who the kids are" and there are those that dictate "say the kids have autism because it's a disorder that the kids have, it's not who they are." I see both sides and right now, the "have autism" people are in the majority so that's how I write my research up.

As for how I talk about me and how I like my friends and family to talk about me...I call myself an aspie and my peeps call me an aspie. I find it to be unthreatening, I guess. I don't hide my autistic self, I talk about it freely, but I try hard to have some kind of sense of peace with it...maybe even a sense of humor about it when I can.

With my son, we try not to talk about it a whole lot because he is VERY sensitive about it right now...he's 15 and when we talk about autism, we do so gently and gingerly and with lots of assurances that he's coping spectacularly.

Thanks to all for your posts.

~Cat

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i guess it depends on the person to what is socially acceptable. but what is politically correct is "to have autism". atleast thats how the media and articles you find put it. but no matter which way you'll get an opposite reaction.

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  • 2 weeks later...

I have no idea about socially appropriate.

I'm the last to know about the social stuff.

I'm autistic, an autie or Maddy if you know me.

My niece is the same but don't call her an aspie.

That's her brother. He has "ass-burgers".

Just don't call us on the phone. We are all phone phobic.

Don't call us retarded, special or stupid.

Especially my niece.

Keep your back to the wall on that one.

She wants complete world domination by her teens.

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To explain injuries, I always use "I take martial arts classes." Or, if a particularly bad injury, "I was in an accident during martial arts class." (Both of these are actually true for me, though.) Works for bite marks in addition to bruises and scratches, at least for some martial arts.

The scars I have from cycling cover up just about anything else objectionable. Wasn't unusual for me to return home dripping in blood (assuming I couldn't find enough gauze and paper towels in the car).

Then again, that's what you get when you combine an adrenaline junkie hypomanic Aspie, a road racing bike, and a bike trail that's a few feet narrower than it should be. Rapid cycling. yep.

Not sure which one but I bet Krav Maga uses bites, since they're extremely pragmatic.

I'm not sure why, but that made me laugh out loud EXTREMELY hard. The pragmatic part, anyways.

I so wanted to get into martial arts here (we have a big immigrant Japanese community here, so there are many styles offered), but if I can't manage to control a bike, I'm not going to be able to control flailing limbs (specifically, those of myself). I relinquished what little control I had left back in October 2005, with my first psiMS attack.

Also, this psiMS doesn't make me take heat too well, so any exercise I do has to be performed in a 60F climate-controlled room with a 50MPH breeze blowing. Which is exactly why I have a stationary-mount trainer for my bike. =D

In any event, yeah, topic? Was there one? Okay I'll assume there was... what do those of us afflicted with autism wished to be called... as an Aspie myself, I say, "who gives a shit?". there.

[i emphasize an Asperger personality trait rather than 'disorder'. I'm quite happy with the way it is, and just slightly medicated by means of Remeron.]

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  • 4 weeks later...

I was going to add a reply on this thread, but, decided to start a new thread under people suck. It relates to this thread only in that it discusses a certain parent's method of "curing" her son's autism. It is disgusting and I felt it would be more appropriate in it's own thread. But, those of you reading this thread, may want to read it. I am requesting that anyone with any legal advice respond to me. PM's are welcome. Without legal advice, I can not take any action due to confidentiality agreements.

PEOPLE SUCK

Strange testing practices

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