Hmm...interesting arguments re "person first"

[LIZARD]

We're having a very interesting discussion about "person-first" language on the CafeMoms autism board about this (multiple threads), and someone posted this. I'm interested in your thoughts. Mil, please weigh in! :)

LIZARD :)

Why I dislike "person first" language
Jim Sinclair

I am not a "person with autism." I am an autistic person. Why does this distinction matter to me?

1) Saying "person with autism" suggests that the autism can be separated from the person. But this is not the case. I can be separated from things that are not part of me, and I am still be the same person. I am usually a "person with a purple shirt," but I could also be a "person with a blue shirt" one day, and a "person with a yellow shirt" the next day, and I would still be the same person, because my clothing is not part of me. But autism is part of me. Autism is hard-wired into the ways my brain works. I am autistic because I cannot be separated from how my brain works.
2) Saying "person with autism" suggests that even if autism is part of the person, it isn't a very important part. Characteristics that are recognized as central to a person's identity are appropriately stated as adjectives, and may even be used as nouns to describe people: We talk about "male" and "female" people, and even about "men" and "women" and "boys" and "girls," not about "people with maleness" and "people with femaleness." We describe people's cultural and religious identifications in terms such as "Russian" or "Catholic," not as "person with Russianity" or "person with Catholicism." We describe important aspects of people's social roles in terms such as "parent" or "worker," not as "person with offspring" or "person who has a job." We describe important aspects of people's personalities in terms such as "generous" or "outgoing," not as "person with generosity" or "person with extroversion." Yet autism goes deeper than culture and learned belief systems. It affects how we relate to others and how we find places in society. It even affects how we relate to our own bodies. If I did not have an autistic brain, the person that I am would not exist. I am autistic because autism is an essential feature of me as a person.
3) Saying "person with autism" suggests that autism is something bad--so bad that is isn't even consistent with being a person. Nobody objects to using adjectives to refer to characteristics of a person that are considered positive or neutral. We talk about left-handed people, not "people with left-handedness," and about athletic or musical people, not about "people with athleticism" or "people with musicality." We might call someone a "blue-eyed person" or a "person with blue eyes," and nobody objects to either descriptor. It is only when someone has decided that the characteristic being referred to is negative that suddenly people want to separate it from the person. I know that autism is not a terrible thing, and that it does not make me any less a person. If other people have trouble remembering that autism doesn't make me any less a person, then that's their problem, not mine. Let them find a way to remind themselves that I'm a person, without trying to define an essential feature of my personhood as something bad. I am autistic because I accept and value myself the way I am.

[Braindrain]

I know you're waiting for Mili, but this sounds similar to the "hearing impaired"
vs. "deaf" argument. I know you and I talked about this on the phone before,
but deaf people prefer to be called "deaf", not "hearing impaired". Why? Well,
because "deaf" means they can't hear at all, which is true. "Hearing impaired"
on the other hand, implies some level of hearing still exists.

All this "politically correct" BS is just that-BS. Did any of these "sensitive,
caring individuals" who thought up this language even bother to ask deaf or
autistic people what they thought of the terms? Probably not.

In a way, the language is denying that part of a person exists. Like the term,
"seizure disorder" or "seizures" for "epilepsy". Yes, epilepsy can sometimes be
controlled by medication, but the potential for seizures still exists. Even if
you don't like the term "epileptic", the fact remains that a person has epilepsy.
Using different language doesn't change the fact, it just "sugarcoats" it.JMO

[tgrimes]

You don't know how I struggle with this. I really believe the acceptance vs. cure argument is so divisive, there will be so many different 'camps' by the time extremists are done, any parent with a newly diagnosed child will have a hard time knowing where to turn.
So many of the decisions I make today, for my ten year-old and fifteen year-old are based in part on 'future insight' gleaned from stories like this, from an (seemingly) adult autistic; however, every story needs to be put in perspective.
The problem is (his/her) neurodiversity is fine just the way it is, so long as there is no economic or other burden on society or others. I would not be very accepting of the person that says 'don't change me, i'm fine...' but expects a disability check in the mail for that very disorder.
Parents have to make the decisions they do based on what they believe to be the highest and best future potential for their child. Many parents have different expectations than others involved in their child's life. Yet no matter what their hopes or expectations, each parent has the right to deem which therapies are appropriate, which are not, or to choose no intervention at all.

[silentmiaow]

tgrimes, that sets a very dangerous precedent in general, what you've said about economics. It could have been used at one time to force women to have sex change operations if we wanted jobs, for instance. And in general it allows people to decide everything for someone if they happen to be unable to work in the current competitive employment system. Which is why I don't see a whole lot of people who have been on disability or welfare benefits arguing for that sort of policing.

But the argument above isn't about a cure anyway. It's about language use. (Which isn't something I feel all that strongly about, FYI, except that people should be called what they want to be called, within reason, and that this is true regardless of whether they collect a government check.)

[milivica]

Ok, gonna put my opinions (not facts, opinions) in italics - I am WIPED, so hope I have my brain in gear here. This is heavy stuff.

I am not a "person with autism." I am an autistic person. Why does this distinction matter to me?

1) Saying "person with autism" suggests that the autism can be separated from the person. But this is not the case.

yes they can, you are wrong. clearly, just cause you are autistic, does not mean you understand autism, understanding autism is not innate or natural any more than understanding nt is for nt's

I can be separated from things that are not part of me, and I am still be the same person. I am usually a "person with a purple shirt," but I could also be a "person with a blue shirt" one day, and a "person with a yellow shirt" the next day, and I would still be the same person, because my clothing is not part of me. But autism is part of me.

ok but if you had epilepsy, would you think of yourself as an epileptic only, when there is so much more to you than that?

Autism is hard-wired into the ways my brain works. I am autistic because I cannot be separated from how my brain works.

no, it's not, actually autism (if neurological and not dietary - cause maybe you just need to stop drinking milk, eating gluten and eliminate candida, your autism is actually a sign of biomedical issues) anyhow, autism is actually a lack of development, in 5 deficits or you could say milestones, much like 5 weak links in a chain of 100 links, you have 95 that are super, 5 that are very thin. Nt's (suprise!!!) have the same exact links as you, all 100 of theirs are thick. Although, not knowing you at all, I don't even know that you have autism, I'm assuming you do.

2) Saying "person with autism" suggests that even if autism is part of the person, it isn't a very important part.

If that is how you feel, it would be disrespectful not to call you an autistic person. You should not have to qualify what you prefer being called, people that respect other people, will respect you. So let me say, I'm uncomfortable that you feel the need to explain. Or that you'd feel offended, that others are not able to borrow YOUR perspective. Try to borrow theirs.

Characteristics that are recognized as central to a person's identity are appropriately stated as adjectives, and may even be used as nouns to describe people: We talk about "male" and "female" people, and even about "men" and "women" and "boys" and "girls," not about "people with maleness" and "people with femaleness."

Hee hee, true, good point - ok you're autistic, valid arguement. Though this is more a cultural thing. EVERYONE is male or female (or both), and for all we know, there may be cultures that do say people with maleness, etc...

We describe people's cultural and religious identifications in terms such as "Russian" or "Catholic," not as "person with Russianity" or "person with Catholicism."

Not as good a point, that is learned, even brain washing to an extent (sorry, my opinion). Not a matter of neurology or genetics, not biomedical.

We describe important aspects of people's social roles in terms such as "parent" or "worker," not as "person with offspring" or "person who has a job." We describe important aspects of people's personalities in terms such as "generous" or "outgoing," not as "person with generosity" or "person with extroversion."

Learned traits, choices, not a good example.

Yet autism goes deeper than culture and learned belief systems. It affects how we relate to others and how we find places in society. It even affects how we relate to our own bodies. If I did not have an autistic brain, the person that I am would not exist. I am autistic because autism is an essential feature of me as a person.

AH, and here we have the crux...the thought of personal change terrifies, the autistic. To change, means you can disappear. A shell of you, will be left...only your outer layer. You, YOU, will be gone, and have no way to find you again. A wandering soulless robot. I can't tell you the years and years and years, it took me to get past the idea, that when I changed (matured, developed, changed views, beliefs) that somehow I was no longer me, I was gone, I was lost, I was a ghost - I can't be sure if nt's experience this with such intensity. Like CHANGE was the most horrifying word in my vocabulary, to change, meant I essentially would disappear. You either feel that way more than you realize, or, feel that way less than I realize cause I'm comparing you, to me, in this instance.

3) Saying "person with autism" suggests that autism is something bad--so bad that is isn't even consistent with being a person. Nobody objects to using adjectives to refer to characteristics of a person that are considered positive or neutral. We talk about left-handed people, not "people with left-handedness," and about athletic or musical people, not about "people with athleticism" or "people with musicality."

Try for a moment, and really think about times when YOU have done this, so you can better understand, and no longer be offended by, what others say, and take it so personally. When describing a friend, or even a stranger, would you say he had epilepsy, or was "epileptic", I would consider that an insult, and such a narrow way to describe a WHOLE person if someone called me "epileptic". You maybe have called someone 'blond' or 'tall', all of which describe PART of that person, but it can infer....by blond you mean dumb, by saying tall you mean they are into basketball.

We might call someone a "blue-eyed person" or a "person with blue eyes," and nobody objects to either descriptor. It is only when someone has decided that the characteristic being referred to is negative that suddenly people want to separate it from the person.

See, that's just not the way I think about it, however, being autistic you have thought about it and perhaps, have OVERthought it. Ya know? How would you feel, if you understood, that folks say 'with autism' cause they see autism not as the nexus of who you are? Once you explain your preference though, I do believe others should respect it, but they may ask why, because they are interested because they love someone, likely their child, with autism...or autistic child.

I know that autism is not a terrible thing, and that it does not make me any less a person. If other people have trouble remembering that autism doesn't make me any less a person, then that's their problem, not mine. Let them find a way to remind themselves that I'm a person, without trying to define an essential feature of my personhood as something bad. I am autistic because I accept and value myself the way I am.

I accept you, just as I would accept someone that puts rings around their neck to extend it, or rather, as I would except their elongated neck which is physical, and their chose. Autism, for someone like you, is a choice. And making that choice, to not further develop the areas (such as understanding other's perspectives) is your right and your choice. Likewise, it is a choice for someone to remain stagnant in any part of their life, that they could change, but will not consider, because the false notion that they could become 'lost' by becoming an 'other', is so frightening, they'd rather stagnate than grow. Growth, development, is CHOICE, choice you get to make for yourself, about how you live, how you feel, how you let your environment and the people in it effect you.

I make a choice, to develop. Development is change, change for me was risk, was terrifying, yes. But after all my fears, having the balls to say "I want more" and go for it, has been the most challenging and rewarding endeavor I've ever done, am still doing. And every day, there is a joy that I never knew before, and every so slightly the feeling of jumping off a cliff with a parachute for the first time and peeing my pants in terror. I am convinced I will never be 'done' growing. I can only hope to hold a candle, to some of my hero's, one of whom is silentmiaow - one of the rare persons that has more self awareness, and ability to borrow the perspective of others, and 'translate' nt to asd and visa versa, than anyone else I know. Sometimes truth is ugly, I hope she has inspired many to look at themselves and GROW. She surely has done that for me. She is quite the Poccahontis.

[tgrimes]

I don't understand why it would be dangerous, and it has nothing to do with state or parents 'policing' in all decisions.
It has to do with the writer's slant that autism is not a bad thing.
Maybe not, for someone mature enough to advocate for themselves, voice their opinion, pretty much take care of themselves.
Possibly, for parents with a child who is unable to speak at age 6, or 16, unable to understand simple directions at age 3 or 13, unable to control self, or bowels, no matter how much you love and accept this "person with a disability" there are definitely 'qualities' you want to overcome.
If a person gets to the point where feel like they are 'done' working on the disabling aspects of their disability, great. That is the time to stop demanding everyone treat you a certain way because you are different, then.

[milivica]

Grimey, I totally totally, understand your first, and second post. I get you on this, I honestly believe I do, and don't disagree. You are not talking about someone with no choice, that receives disability checks, which is totally fine, and it's too darn bad all that truly deserve help, financial or otherwise, do not receive it. Or at least that's how I took your statements.

Also, you are talking as a mother, trying your damndest, for your children, who you love more than yourself.

[tgrimes]

Oh, good. I was beginning to think this could be seriously misinterpreted..

[milivica]

Silentmiaow I too didn't quite understand your response, which actually kills me to say, cause I pride myself on 'getting' stuff, especially stuff you say.

So I hate to even admit it, but ya lost me.

I took tgrimes as speaking about folks that are unWILLING, not unABLE. Some of us moms, would love to have a child, with enough ability that they were ABLE to post what they expect from others. Some of us moms go beyond our limits day after day, cause our child's happiness, means more to us than our sanity - yet - we see other moms do nothing, nada, squat, for kids with double our kids' skills, cause they'd rather suck up their kids disability check, or, some folks can manipulate the system, got the 'skills' and 'ability' to steal from the system but won't work. To name a few examples.

Take yourself, if you cannot leave the house to work, or gain employment from inside your home, well God of course you should receive what you need. If you yack on the phone all day, and run to your chair when a state worker knocks on the door, that's a whooooole nother thing. You wouldn't deserve squat. Now you, you are a worker. Though you don't get paid for it, look how you give back, how you work, for others. Some work, does not pay in money. You are never the less a worker - just the videos on YouTube are amazing, and that is a fraction your work. If, knowing all you know, you did not attempt to share with others, that would make you a bum - you could choose to do nothing, to give back nothing, to not work, you do not choose that, just the opposite.

At this point, I dunno how tgrimes feels, I suppose by paragraph 2 it's all my opinion. Take a moment to be thankful, it only took me 2 paragraphs (hee hee, you know I'm a notorious verbose person right?). Personally, as you know, I think the world of you. Weather you ran a billion dollar corporation or got a disability check, that makes no difference - you give of yourself, you work in a way that helps humanity, helps others grow - those that choose to anyhow.

I know it's just almost weird, how much I admire you, it's the stuff you do that you don't have to, that has struck so many feelings I always had, and had no verbiage to match. Anyhow, you rock. You're a real Poccahontis.

OH GOSH...how in the world are you feeling? How is your tmj, all the health problems you've been having. Sounded just terrible last time you posted here.

You biggest fan (and perhaps a bit creepy too, sorry bout that),
Mili

[tgrimes]

'sigh'... Now I think i misinterpreted the original post, I think it is in response to something else, the old argument about usage of 'disabled person' vs. 'person with a disability', and somewhere a website with a logo of "people first..."
Is this what it's about? guess i'll have to visit cafe moms

[milivica]

Grimey, it would really help me if you stuck with your original opinion. Gonna really suck if I'm all "I get you, I understand you" and you go "oops I didn't mean that".

Help a sistah girl out here.
:o

[tgrimes]

I took tgrimes as speaking about folks that are unWILLING, not unABLE. Some of us moms, would love to have a child, with enough ability that they were ABLE to post what they expect from others.
Mili

Actually fueled by thoughts of my brother, who has a head injury and legally blind, but no desire to do anything for himself (he did have part of frontal lobe removed), he lives in near squalor so I clean for him since we can't get anyone else (or him) to do it, and just thinking, if he made some kind of comment about he is a "disabled person not a person with a disability, don't forget it.." I would go though the roof in a rant about how I pick up his dog's poo, because he says he can't see, yet he is able to walk to the bar with his friend and somehow play pool... yeah, he would totally get an earful about how that should be the LEAST of his worries.
Besides, I don't call him disabled, I call him by his NAME.

[tgrimes]

Grimey, it would really help me if you stuck with your original opinion. Gonna really suck if I'm all "I get you, I understand you" and you go "oops I didn't mean that".

Help a sistah girl out here.
:o

No, I mean all that... i'm just questioning the context of the original post.

Why do you care, you don't need me to support your beliefs, you are sounding usure of yourself. Stop that.

[milivica]

Besides, I don't call him disabled, I call him by his NAME.

HA! That's a good way to say that. His NAME.

So, he is ABLE to pick up the scooby doo poo, he is unWILLING. If he were unABLE, you wouldn't feel as you do. BTW, darn nice of you to make sure scooby doo can romp around in his poo free yard - while mr too disabled to scoop poop walks to the bar and shoots pool.

Are you sure we're not related, I got similar in my family...how can you ride a Harley Chopper, come and go as you please for days, weeks, live at home, never pay bills, food, house, clothes, all free....if you are too physically disabled to do telemarketing???

[milivica]

No, I mean all that... i'm just questioning the context of the original post.

Why do you care, you don't need me to support your beliefs, you are sounding usure of yourself. Stop that.

It was a joke, or my version of one at this hour. I was supposed to say it would help me out if you'd stick to your original post, as though even if you didn't mean what you said stick with it anyhow so I won't be embarrassed for supporting it.

Geez, much less funny now - guess that's what I deserve, I'm supposed to be GrimeRDAing.

[tgrimes]

YARD?! Like i would even care, i mean all over the house. A week's worth of poo every week! Now I know why I have a poo phobia, it's not a phobia it's annoyance. I do make my brother clean with me the whole time I am there... but it's all he does all week. I bring him shopping, and before he puts stuff away I find all these empty cartons in the fridge... empty soda 12 pk box, empty milk, garbage everywhere, etc. So many roaches and no matter how much I spray I can't keep them under control.
I try to compliment him for what he does do while i'm there, but it's getting more difficult. I think he's smokes too much aKuna matata, if you know what I mean.

[tgrimes]

It was a joke, or my version of one at this hour. .

Well I should have seen that... yeah, my jokes are a little off color most of the time so I can relate.

[milivica]

YARD?!

Ok, for no reason I can explain, the moment I read YARD?! I burst into laughter, not cause it's funny, but cause, honestly I don't quite know why, cause of my assumption, and your reaction. But no, please don't think I'm laughing that you have to do that.

My gorsh woman, who takes care of YOU in all this? Seriously, anyone rubbed your feet or cleaned the hair out of the drain or replaced the tp on the spool lately?

I'm really starting to have post puss regret here. You're making it hard to antagonize you! I just want to run over, serve you tea (or booze) from your comfy chair so you can sit back, and put your feet in an epson salt soak, dry them, make two handsome men massage your feet, one on each foot. Till you're snoring and drooling.

[Keggy]

I still think refering to people as autistic is dangerous, as we are much more than a one word description and ever evolving. And, yes you can separate the autism from the person.
Moldy...I liked your post.

[milivica]

Thank you, I was totally typing off the top of my head. So worried about it some. I think if there was a real definition of autism we could all wrap our heads around, there wouldn't be the divide over saying with autism, or autistic. I no longer care how anyone says it, cause the definition of autism is clear in my mind.

On those forms you have to fill out for school, where it asks if there are any concerns (you know that part where you're supposed to put autism) I now put Impaired: flexible thinking, episodic memory, referencing, regulating/coregulating, emotion sharing, appraising his surroundings moment by moment to select priority and not become overwhelmed, expressive and receptive communication - though he can speak and understand individual words it is difficult since reading body language and inflection to communicate or understand intention/meaning from sentences, self awareness and ability to borrow other's perspective.

How's THAT for a mouthful. There's no way anything he could do that would be negative behaviorally, that is not related to any of that. And actually, he's a great kid, and improving each of those issues above just allows that to come out more and more. The word would lose importance, if it didn't over define/underdefine people at the same time.

When you are autistic though, it can really feel like the primary defining characteristic of self - weather or not you can verbalize it. Autism is a barrier to so much a person wants and desires and deserves, yet, it can be simultaneously the reason you enjoy and excel at many things. Eh, hard to describe it. I dunno if it's dangerous or not to say autistic person instead of person with autism, I think no matter how you say it, the danger is the type of person who is saying it, the type of power they have over someone on the spectrum who may not be able to speak for themselves.

Oh well, glad you call me Moldy...woman with mold is a gross visual, know what I mean Krusty. :D

[frogmama]

Dosen't it just kill you how Moldy, "typing off the top of her head" can put into words all the stuff most of can only think around the edges of? Geez, girl, god forbid you should ever REALLY THINK about something, you could write a bestseller, or rule the world...

I've never really thought about it much, but I've always said "Matthew has autism" Same as I would say "Amanda has red hair" or "I have a really big butt". I don't see that one thing as being ALL OF HIM, you know? I guess we all have to choose our own labels,(so I'm not a "Vertically Challenged Disabled Woman of Weight", I'm a short fat chick with a limp). So until and unless Matthew himself tells me different, he HAS autism, it dosen't have him.

[LIZARD]

(so I'm not a "Vertically Challenged Disabled Woman of Weight", I'm a short fat chick with a limp)

Sounds vaguely familiar...Oh, yeah...ME! :D :o

Short...hmm...not really (5'6"ish)
Fat...Uhhh...60 lbs over counts, huh??
Limp? Check :D

Who were you talkin' about again?? Um, yeah. I'm senile, too! :p :D


LIZARD :D :o

[milivica]

Froggy - how's it going? (It meaning RDI). I just did a tape, omg, what a flop. It's funny though cause every time I send a flop, Amy finds all this stuff I was doing that I didn't know I was doing and spotlights all my 'rights' and modifies my 'wrongs'. Geez we had a good talk yesterday, about RDI of course. I called her to tell her don't be surprised if Jenny Mccarthy calls her. I know eventually, she will get my email, or my post on Oprah. Sometimes, when you have such a young kid that is so high functioning (aka gobs of memorized skills) you think, "cool, we're going to do this thing, he's going to make it". And as the child gets older, and the gap between he and his peers widens, the depression sets in, for the child and the parent, I don't have to tell ya, it gets hard.

Overall I liked that Jenny girl, but, one thing I very much did not like - she really needs to get it, that it was not her 'mothers instinct' that is saving or working for her child, she got damn LUCKY. She got damn BLESSED. Plenty of mother's with plenty of instinct try for years and years and years, often under dire circumstances, and do not succeed - because this is a biomedical and/or neurological, condition. She could have just as easily, tried gfcf and the tape with throwing the ball (which is NOT function, her child is imitating her, doesn't mean he's noticing weather or not she wants to play, is enjoying playing, is not going to have a meltdown when he misses catching the ball), she could have tried all she did and gotten ZIP had he for example been fragile X, or been fructose intolerant like Coley - ok so anyhow, that was the thing about her that really really bothered me, the way she actually had the ego to give herself credit, when she should realize how very lucky and blessed she was. And how many, with great instincts, have not. Overall, she was good, but she is missing and totally unaware, of the 'why bothers' of say throwing a ball back and forth, for instance.

Holly, wow that think about the 'window' of opportunity - that is old old school. No such a thing. Brains don't solidify. If they did, stroke patients could not relearn all they do. What she and Jenny said about testing for allergies to gluten and casein, and no mention of intolerances (which will not show up in testing). So, I suspect they don't know that. And yes it's great her son is such a piano protege, but I find it not believable, that given true freedom to choose, he wouldn't rather be riding bikes with a bunch of friends, being a boy with other boys. And by true freedom, that means free from the deficits of autism that prevent him from enjoying other peers, and visa versa, from getting the 'why bothers' of riding bikes together.

The 'why bothers' are the missing piece, of every other therapy, intervention, program, that exists.

(And I didn't say RDI)

[silentmiaow]

If calling a person autistic is dangerous because autism isn't all of what someone is, then surely I should not be called a woman, an American, a Quaker, a brunette, a left-hander, because those aren't all of who I am either (some are even less of who I am than autism is, and yet they are not considered offensive to call me).

I don't have huge amounts of preference with person with autism vs. autistic person (I think autistic person or autistic is easier to say most of the time though, and somewhat preferred, although I casually use person with autism sometimes just because it happens to be the words that pop out of my fingers), but I do have a real problem with people who insist on "person with autism" as the only respectful way to refer to an autistic person. Note the "insist" part. I find it really patronizing to be told what I have to be called and kind of insulting to be told that "autistic" is such an insult that it has to be relegated to after "person" so people can supposedly be reminded that I'm a person (despite the fact that the only things that can be autistic are people).

[LIZARD]

If calling a person autistic is dangerous because autism isn't all of what someone is, then surely I should not be called a woman, an American, a Quaker, a brunette, a left-hander, because those aren't all of who I am either (some are even less of who I am than autism is, and yet they are not considered offensive to call me).

I don't have huge amounts of preference with person with autism vs. autistic person (I think autistic person or autistic is easier to say most of the time though, and somewhat preferred, although I casually use person with autism sometimes just because it happens to be the words that pop out of my fingers), but I do have a real problem with people who insist on "person with autism" as the only respectful way to refer to an autistic person. Note the "insist" part. I find it really patronizing to be told what I have to be called and kind of insulting to be told that "autistic" is such an insult that it has to be relegated to after "person" so people can supposedly be reminded that I'm a person (despite the fact that the only things that can be autistic are people).

This is a very compelling argument and one that would be useful to quote on the CM thread where we were discussing it (if I can recall where it is :rolleyes: :o ). As I said to them, who the H3LL are any of us to insist to the group we're talking about that we're right and they are wrong??!! :mad: :rolleyes: It pi$$ses me, off, and I can only imagine how it makes them feel! SM, you stated it in a way that should make it abundantly clear to all of us. Thank you! :)

(((((((((((HUGS)))))))))))),

LIZARD :)

[frogmama]

what was the old joke...call me anything you want, just don't call me late for dinner?

Sometimes it's all about just not pissing people off, say I'm describing the cashier who messed up my sale to the customer service counter; Maybe she is a short, fat, black girl with a ring in her nose. So which part of that do i use to describe her? The black girl? oooh I'm a racist! The fat girl? Ooooh, I think fat people are stupid! The ring in her nose? Ooooh, I'm intolerant of other lifestyles! So what do I say - the SHORT girl beacuse I'M short, so it's ok to use as a descriptor since I must know what being short "is all about". It's like black men can call each other n166er and women can call each other bi-otch and blondes can tell blonde jokes (not like we understand them though :)) YOU CAN'T WIN, so just try to tie, ok?

[tgrimes]

I'm just so shocked by some of this - do I live in make-believe world or something?
First of all, if one of my kids were to walk up to someone and say he was 'an autistic person', I would consider that a problem.
Not because of the phraseology, but because of the mindset that he would even have to identify himself as a disabled person at all. What would be the purpose of identifying himself as austitic to someone in the first place?

[silentmiaow]

You're not thinking about context.

It's not about walking up to people at random and saying, "Hi, I'm an autistic person." That doesn't make sense.

But surely you do see there are situations in which identifying oneself as autistic or non-autistic has a point to it.

For instance:

* On boards such as this one, saying "I'm autistic" generally isn't out of place in the context of a post where part of what you're saying has to do with being autistic.

* In the context of explaining why you're doing something a certain way, it might be important to say you're autistic, and might not, depending on the circumstance.

* In the context of any discussion of autism, being autistic or non-autistic might come up.

* In the context of discussing how people differ from each other, being autistic might come up.

* In an online or offline gathering of disabled people it might come up.

Why do you assume that we're all talking about situations where it'd be out of place to say you're autistic?

Autistic isn't a dirty word. Neither is disabled. I'd prefer a word that identifies a part of how I work not be treated like a dirty word. I find the idea that a condition I have (whether pleasant, unpleasant, both, or neither, mind you) is an insult, more insulting than the worst of derogatory words thrown at disabled people. I would rather be told I am a crazy crippled retard than told that the various ways in which my body and brain function differently from other people are so insulting and so much to be hidden that they don't belong mentioned in polite company (and are out of place being mentioned almost anywhere) and must be separated from me in order for people to remember I'm a person.

Not to mention the idea that if we refer to ourselves in certain ways then it must reflect other people's prejudices about what disability means.

Other people's prejudices (which some disabled people also hold, we're not immune to internalizing this stuff) include:

* Disability as limitation within a person and only limitation within a person, nothing good about it ever.
* Disability as all there is to a person (or as not at all relevant to who the person is, whatsoever, as if it's just some kind of totally external add-on, as if that's even possible).
* Disability as the opposite of progress or change (and disabled people who question clumsy attempts to "fix" us as afraid of progress or change)

Basically... when I see people saying "why on earth would you want to be called that?" they're projecting all their prejudices of what "that" means onto people who willingly identify ourselves with "that". It may be that we simply don't have the same prejudices about ourselves as others have about us. It may be that we simply don't identify "that" with every negative idea of what "that" must mean. But people always seem to assume that disabled people who refer to us as disabled people (or whatever other term is out of favor) are actually identifying ourselves with the worst stereotypes of disability.

By the way, to many disability activists, disabled is a verb, it's something that's done to people whose bodies/minds/etc function differently from those who are planned for, who are enabled by the society they live in whereas disabled people are disabled by putting up physical or attitudinal barriers to our participation. In which case it's not an insult or even about an innate trait, but stating a reality of where we stand in the power structure of things.

[milivica]

I dunno if this is 'right' or whatnot, I always identify myself as having aspergers, as being on the autistic spectrum at the beginning of every IEP, and, ask if anyone else in the room is on the spectrum. I have no idea why, but that makes the folks that fight me very very uncomfortable. I know this cause they never answer the question, instead of saying "no" they say "well we have a lot of experience with autism". Well not enough apparently or I wouldn't have such a tough time communicating in these meetings. I also make sure I let them know I feel very uncomfortable being there with no translator, so to speak. I understand all the individual words, but not the overall meaning. I do not play chess. I do know how all the pieces move and understand what rook and pawn mean and so on. When you move your piece, I cannot understand the impact of that move (an eventual check mate) or even understand the eventual impact of my own moves. That's kind of my analogy. If you've ever talked to someone and then said "What do you mean" it's like that for me with every sentence, in IEP's anyway.

------------------------------------------------------------------------------------------------------------------------

Amanda,

"When you said" Disability as the opposite of progress or change (and disabled people who question clumsy attempts to "fix" us as afraid of progress or change)" I hope you know when I talked about how terrified we can be of change, I did not mean the kind of unnatural adversive changes that come with the clumsy attempts you speak of, I mean RDI.

Also, the thing about autism being a dirty word...I have thought about that lots, and didn't think I felt like that about it, but actually I do. Not when I think about autism and myself, but when I think about autism and all the things that make my son so unhappy. Though, we've done lots to make sure the house bends around him, we have 'Vince World' here, and it's just the way it has to be unless we wanted to make him feel unloved and miserable. But, I work on, and will always continue to work on developing all the things about his autism that make him unhappy. Not to please others or anything, screw that. But to have a sense of what is 'good enough' so he can be flexible in his thinking and not become upset when things aren't just so, help him with ongoing appraisal so he doesn't become overwhelmed, just all things that will help him to understand the other person's feelings and thoughts so he can protect himself and avoid bad folks, and enjoy the friendships of good folks - and communication so he has a voice (be it using sign or a keyboard or his vocal chords, doesn't matter) cause the more you can communicate (receptive and expressive) the more choice you have over your own life and destiny. This world is not fair, is not going to change for my child, and in that way autism is a dirty word - I suppose due to geography more than the word itself. The word itself is what it is, not good or bad, it's just autism.

Also, I don't remember reading how you are feeling these days, your TMJ, your overall physical health? How are you doing?

[tgrimes]

You're not thinking about context.

It's not about walking up to people at random and saying, "Hi, I'm an autistic person." That doesn't make sense.
.

Miaow -
Whew, what a relief to hear that.... I thought people were gonna just go ahead and start wearing it right on their t-shirt or something.


But surely you do see there are situations in which identifying oneself as autistic or non-autistic has a point to it.

* In the context of explaining why you're doing something a certain way, it might be important to say you're autistic, and might not, depending on the circumstance.
.

Yes, to all the others you wrote, but this is the area that gets hard to call. I want to stop myself from using this whenever it can look like an 'excuse' or even when someone questions the method of things... I want to say "that's just the way he does it" in every conceivable circumstance. I don't want to set my sons up for using it in later life.


Autistic isn't a dirty word. Neither is disabled. I'd prefer a word that identifies a part of how I work not be treated like a dirty word. I find the idea that a condition I have (whether pleasant, unpleasant, both, or neither, mind you) is an insult, more insulting than the worst of derogatory words thrown at disabled people. I would rather be told I am a crazy crippled retard than told that the various ways in which my body and brain function differently from other people are so insulting and so much to be hidden that they don't belong mentioned in polite company (and are out of place being mentioned almost anywhere) and must be separated from me in order for people to remember I'm a person.

Not to mention the idea that if we refer to ourselves in certain ways then it must reflect other people's prejudices about what disability means.

Other people's prejudices (which some disabled people also hold, we're not immune to internalizing this stuff) include:

* Disability as limitation within a person and only limitation within a person, nothing good about it ever.
* Disability as all there is to a person (or as not at all relevant to who the person is, whatsoever, as if it's just some kind of totally external add-on, as if that's even possible).
* Disability as the opposite of progress or change (and disabled people who question clumsy attempts to "fix" us as afraid of progress or change)

Basically... when I see people saying "why on earth would you want to be called that?" they're projecting all their prejudices of what "that" means onto people who willingly identify ourselves with "that". It may be that we simply don't have the same prejudices about ourselves as others have about us. It may be that we simply don't identify "that" with every negative idea of what "that" must mean. But people always seem to assume that disabled people who refer to us as disabled people (or whatever other term is out of favor) are actually identifying ourselves with the worst stereotypes of disability.

By the way, to many disability activists, disabled is a verb, it's something that's done to people whose bodies/minds/etc function differently from those who are planned for, who are enabled by the society they live in whereas disabled people are disabled by putting up physical or attitudinal barriers to our participation. In which case it's not an insult or even about an innate trait, but stating a reality of where we stand in the power structure of things.

Most of this sounds either provokative or self-deprecating to me, and is the very reason I am trying to steer away from this kind of thinking.

I am sorry if I have insulted you.

[silentmiaow]

Yeah, I find that it's impossible for some other people to conceive of disability as anything other than deprecating or self-deprecating or something, but that's not the problem of people who don't think that way.

[silentmiaow]

Regarding autism being a dirty word, I am currently not enjoying seasonal affective disorder, never do enjoy it, but I don't consider it a dirty word either.

[tgrimes]

What people who don't think that way?
Let me tell you something - I was interested in your posts enough to think maybe I was missing something about this, went to your website, hoping to gain some insight, only to become really even more confused... especailly because you say that after a seemingly normal early life and even advanced placement classes, this all happened to you after you started college.
Further, it pretty much highlights why the whole neurodiversity movement is divisive. No one ever called autism a dirty word here.

So form now on, I probably won't listen to your attempts tell me how autistics feel or think. My sons might be dx'd with the same disorder, but that does not equate to feeling or thinking the same way as you.

[milivica]

Yeah, I find that it's impossible for some other people to conceive of disability as anything other than deprecating or self-deprecating or something, but that's not the problem of people who don't think that way.

I feel like this is going to come out wrong, so I hope it won't.

I just feel a sense of 'safety' when I hear the word disability - I guess I always envision that disability=more, more of the things I enjoy being around anyhow. I envision that disability=perspective, disability=nonpetty people, disability=fun together, JOY loving people, Good Hearted people - not devoid of being a real meanie from time to time cause hey we're all only human, but, a meanie I can 'keep up' with, not a dozen moves ahead of me so I get ran over by their vengeful or mean neurology. My mean compared to nt mean is like a 2 year old against a 42 year old. And that makes me feel fearful, like I'm always judged and looked down on or something.

I have been shocked, at how very petty so many parents of kids with disabilities still manage to be, woah. It just makes me so uncomfortable, they get annoyed or pissy with other parents' kids and stuff, instead of being a ball of encouragement to ALL there like they should be. So many of them could and should learn a lesson from their awesome kids playing there. The kids are the best part of it all. I don't get how any adult can get swooped up in who fouled, who did this, who did that, who won, who lost. Geez, who tried, how about that? You know?

I just totally enjoy the energy, of nonpetty people, and enjoy the way being around them, and enjoy their positive influence and focus on finding joy instead of b!tching about all their have nots. I've just so happened to find that 'joy' of life around disabled more than nondisabled. Though the person I know that does that the most, is one of my two nt friends, omg, I tell her all the time I think paxil fumes must seep from her pours. It's like she never notices the bad only, she always has sort of this conscious 'tally' of good, so when bad comes, she copes and has such great perspective, it's so cool. She's taught me so much without even knowing she did.

[tgrimes]

I just feel a sense of 'safety' when I hear the word disability - .

What? That's how munchusen sufferers feel... I was just looking into that recently because of some news story I read... I came across some type of 'disorder' called munchausen by internet, coined by a real 'smartypants' I guess. Anyway, be careful about that :)

[milivica]

Grimey, are you hearing Miaow right, could you be 'translating' what she is saying, into other meanings? Cause I don't get your response to what she said, honest I don't, it sounds angry.

Munchausen's I sure don't think of as a disability - dunno what the medical community thinks. That's when parent's intentionally get their kids sick, even killing them they go so far, so they can get attention from doctors and sympathy and stuff.

Give me all the 'crap' you want (that was a fun thread!) but you sound like you're being angry, let's talk about it differently, either devoid of emotion like a debate, or, we can just agree to disagree.

[tgrimes]

Munchausen's I sure don't think of as a disability - dunno what the medical community thinks. That's when parent's intentionally get their kids sick, .

No, that's munchausen by proxy. But Munchausen disorder, is, yes, very disabling, the person initally enjoys participation in different syndromes to get psychological comfort, but then they end up suffering just as if they had the real problem, sometimes for their whole lives, because they must then live their feigned illness. So they end up disordered, when they weren't, something like that.

Regarding silentmiaow posts, glad you understand her, yes I was angry, but I think I better take a step back and think about all this posting, don't know who I can trust. If you remember when someone called lucas posted here a couple years back, then I don't have to explain what I feel, (and why I want to avoid that feeling)

[milivica]

Ohhhh, yes, I totally remember him. I still wonder about him from time to time, hope he's ok, wonder how angry he is today - if he found a girl, an independent life, if he gets in legal trouble lots, if his mom still scrapes porridge off her walls...with him here I was miserable. I don't want to be on a combative forum with no 'crap' to talk about ;) Or puss. Or nutty songs.

Miaow is a really cool 'translator'. At least to me she is (or Amanda if you're reading this, change 'she is' to 'you are'). Also to me, she's really objective, VERY able to borrow nt perspective, more so than nt's are able to borrow hers, but then explain things in a way that isn't accusatory but informative, plus way better at saying stuff without droning on like I do....you can understand why I'd admire the quality of being brief I'm sure :o I don't ever recall hearing her throwing stones or insults or getting all worked up, just objective and factual - but factual about very abstract things. Always FAIR. The thing that most impresses me, that I both admire deeply and feel jealous of, is she (you Amanda) knows HERSELF, her preferences, didn't become 'lost' in what others wanted and expected and demanded, knows WHO she is, knows who others THINK they see. That kind of thing....I hope I explained it well.

OK, an example would be, how Tony Attwood can translate asd to nt, even though he's nt. That's now I see Amanda, only she does nt to asd and visa versa. It's hard for me to explain....like if I were in one of Vincent's IEP, she could totally call a spade a spade when folks are talking to me like I"m a dope, and instead of being a dope she could clue me in that I was being manipulated or whatnot AND she could tell the staff what sh!t they were trying to pull, not in a rude way, but like point blank sort of like a New Yorker, why waste your breathe (and my limited attention span) on flowery adjectives that don't say what you mean anyhow.

And the munchhausen thing, ok, didn't know there was different kinds, a by proxy and not a by proxy.

I was thinking since I posted. Ya know, I think overall, my experiences with nondisabled have just been so bad 99% of the time (except HERE) and with 'disabled' have been so good 99% of the time, I guess that's why I just feel more comfortable or less fearful, about the word disabled. Even when I was in an institution those times, I never can recall a problem with the other patients, weather they were my age or even the ones that were like 90 at least. But I did fear the staff, and some used us to bear the brunt for their bad day, and they could do really bad things to the cute blond girls at night. So they scared me, I felt safe with the patients though, even when they were kind of scary, it's like it was easy to know your boundaries and their limits. Hard to explain. So, pretty much from 15 on, I gravitate toward anyone that seems 'different' to me, cause that seems safe.

Though I've never analysed it before - so who knows if I'm right.

I remember being a child and being afraid of some physical differences, so I wasn't always like this where I gravitated toward 'disabled' as being safe. Well at first I'd be more apprehensive anyhow, but fortunately being aspie I'd ask inappropriate questions, the person would answer me, and bang i was good to go. I had a very fun friend, I think he was 25 or so, I was 10, I suppose he is what is called 'retarded' which I hate that word and would love to hear a pc word for it. Anyhow, I remember us rolling a ball in his kitchen, back and forth forever, and we were laughing and having so much fun, then he asked his mom if we could have a sleep over on his back porch, and she said no, and told me not to come back again that I couldn't understand but I was getting him too excited. Ew! That wasn't true at all, he was just having a really lot of fun and didn't want it to end. I probably just left mystified. Nothing ever made sense to me, this was no different. I remember thinking excited meant happy, so couldn't understand what was wrong with it.

So, maybe what I should say, is to me the word disabled=not mean. Might not always be true, we all have moments of meanness or anger, but it's been true in my life. Like, every see that movie "She's So Lovely" with Shawn Penn, like her, I'd have picked Shawn Penn in a heartbeat over 'Ravolta' (as Pogue put it). I told dh that, he was like "Of course". So, I guess he and I are weird that way. But hey, we're weird together! I'm afraid you'll think I'm completely unhinged for saying that, but hey it won't be the first time ya think that or the last.

Me Mili :D

[silentmiaow]

What people who don't think that way?

Most of the disability rights movement, most of the disability community, most people who don't hold to the medical model of disability. I really would suggest looking these things up and studying them, rather than making assumptions. There are more than one way to look at things.

Let me tell you something - I was interested in your posts enough to think maybe I was missing something about this, went to your website, hoping to gain some insight, only to become really even more confused... especailly because you say that after a seemingly normal early life and even advanced placement classes, this all happened to you after you started college.

I didn't have a seemingly normal early life. They don't hand out autism diagnoses to people who had seemingly normal early lives.

Unless you count these things as seemingly normal:

1. Not knowing how to nurse when born, needing to be explicitly taught, seeming to have no instinct in that direction.

2. Having eye-tracking problems and other neurological 'soft signs' since infancy.

3. Acquiring a little bit of speech and then losing it in infancy, regaining echolalic speech with impaired receptive language (which even at the age of 5 tested as far lower than expressive).

4. Reading field guides to birds at the age of 1.

5. Having the preschool call my parents to ask why I seemed just fine when I was alone but emitted a high-pitched shrieking noise when anyone approached me.

6. Being in counseling throughout childhood for serious problems with social skills, having been told by the well-meaning but inept counselor that I must have been traumatized by falling into a duck pond when I was little.

7. Being held back a year in fourth grade because of social skills problems.

8. Having frequent meltdowns that got me in trouble a lot at school, horrible organizational skills, etc.

9. Having trouble learning the "basics" such as nursing, walking (and even when that got sorted out, still having an unusual gait and bending forward and not swinging my arms and so forth), dressing, brushing my teeth, bathing, and toileting. Still sometimes peeing on the carpet at the age of 13.

10. Always having some narrow field of interest, whether sensory or conceptual.

11. Having unusual movement patterns pretty much since I was born, including rocking, etc., but also including stiffness and mild parkinson-like traits.

12. Beginning to experience burnout at the age of 12 or so (because of trying to do things that were beyond my actual sustainable ability level for so long), which got me accelerated in school rapidly because it was assumed to be boredom, which led to more and faster burnout.

13. Always being incredibly passive socially.

14. Having parts of that burnout consist of frequent shutdowns, stimming in public more often, losing the ability to speak, comprehend language, move, or respond to people, etc, and having that get more frequent as I got older. Being seen by a neurologist and neuropsychologist because of this. (Many years later some of this was noticed as the acceleration of a parkinson-like movement disorder that eventually led to speaking less, etc.)

All before college, mind you. I doubt most people would call that seemingly normal. The burnout is what got people the most alarmed, it does not mean that I was "normal" beforehand.

The author of the article that sparked this thread has the same movement disorder, and was a factor in getting me diagnosed with it. (A friend of his saw me freezing and recommended an article on it. I gave it to a psychiatrist who'd known me since early adolescence and he agreed it completely described the movement problems he'd seen in me for a long time.) He by the way didn't speak until he was 12 but was in college at the age of 13 or 14 and was in gifted programs before that. Those things, as well as the existence of such a movement disorder that causes us to lose abilities we previously had, do not mean a person has been "normal" or "seemingly normal" all their life.

But all of that is pretty complicated to explain briefly. I can't give my entire developmental history every time I have a conversation with someone (I haven't even given all of it here, just the short version).

Further, it pretty much highlights why the whole neurodiversity movement is divisive. No one ever called autism a dirty word here.

Some people do find it divisive to see opinions that differ from their own. I don't. I also think sometimes people find it divisive to have division that has always existed, pointed out -- it makes them feel like the person pointing it out has created the division. I haven't created any division, I have just attempted to explain a division that already exists. It won't go away if I do.

So form now on, I probably won't listen to your attempts tell me how autistics feel or think. My sons might be dx'd with the same disorder, but that does not equate to feeling or thinking the same way as you.

I didn't tell you how 'autistics' felt or thought, I tried to explain why someone might feel differently than you do. Which includes some autistic people and some non-autistic people, just as many people (both autistic and non-autistic) disagree with me. I thought you were interested in how people's opinions differ and why.

I don't think it helps things to think that people's opinions are because of what kind of autism they have, though. I know people with very similar histories to mine and very different opinions, as well as very different histories to mine and very similar opinions. I thought you were interested in the differences of opinion here, not the differences in forms of autism.

[silentmiaow]

And I wasn't aware I didn't drone on. ;-)

I find that people tend to characterize me as angry based on their own reactions of anger or fear, then they assume I'm angry. (I wrote a post about that, or two or three, on my blog, ages ago.)

As to disability, I experience it mostly as differences in how people work, how they're put together. Neither positive nor negative, really.

You might be interested in sites like Disabled and Proud (http://www.disabledandproud.com/), or the essay, Disability Shame Speaks (http://www.raggededgemagazine.com/life/shamespeaks1.html), which has the interesting quote:

Children are particularly vulnerable to my traps. Eventually they learn that they are different, no matter how many people tell them they are just like everyone else. That is when the fun begins, and I work on teaching them that their bodies are not truly important. In the beginning, they don't believe me. They run and jump if they can; rock, roll, and crawl if they can't. Their bodies seem as they really are: Joyously alive, and they move for no one but themselves. They know no other way. But I have my ways of stopping this. I just wait for them to grow up.

Lots of people just feel like this is our normal, and then we're taught for our whole lives that it shouldn't be. I would also recommend the book Too Late to Die Young by Harriet McBryde Johnson, Pride Against Prejudice by Jenny Morris, etc. The so-called "neurodiversity" movement, for whatever faults it has, is part of a wider disability movement and can't be separated from it neatly. If people want to experience different perspectives on disability, they really should look up people with totally different disabilities who have these very similar perspectives.

[silentmiaow]

Also (sorry to keep replying, I keep reading these posts in little bits), I did get very lost in what other people expected of me. Extremely lost, upside-down and inside-out and floating along having little clue what was going on, why I was expected to respond one way, and another, etc. The thing was I found my way out again. I'm not sure how but it's possible. I had some really good friends to help me through it. But no, I was very spectacularly not-together for awhile, I described it a little in my interview with Donna Williams.

I know a woman who was lost in expectations like that until she was in her fifties or so and finally properly diagnosed. She'd managed to get married and stay that way for decades before she had a clue what was going on. She did finally figure things out, and her husband was extremely supportive. She was one of the contributors to Women from Another Planet.

Which is to say, there's hope, even in that muddle of "I don't know what I'm doing or why I'm doing it", there can even be 20/20 hindsight eventually (which I'd even given up hope on by the time it happened, despite otherwise knowing myself pretty well by then). Lots of autistic people I know have managed to climb out of that confusion in one way or another, so it's possible. I wish I had a better roadmap out of it though. I do know that caring, perceptive, and supportive friends helps a whole lot.

[milivica]

So then, you know what I mean by how much I admire and am jealous of, how well you know YOU. How lost one can become in memorizing unending nonstop adversives are 'good', and trying to become that which others tell you to become, and it feels about as natural or automatic as trying to pee out of your ears. It's impossible to do as others ask, you are a kid so you are humble and trying your best and going beyond trying your best, as careless nt adults make you kill yourself inside, damage your body, what ever to do as they casually demand - and what they thoughtlessly demand makes no alterations in their life, while it destroys your body and your self. Know what I mean? I still cannot find 'self' in all this leftovers I got back, when I got enough skills to make my own choices. Know what I mean? I hope you do, it's not possible to explain to anyone that didn't have 'staff' raising them instead of a loving family.

Is your interview with Donna on YouTube?

We used to email, I suspect she was unimpressed by me but I sure was impressed with her. Last I heard was a couple years back, she was moving back to Australia and getting married. Dunno if it went that way. One thing she said that always stuck with me, is that some people become all self and no other, some become all other and no self - the latter is what eventually happened to me, like I said above.

And nope, you definitely don't drone on, that wouldn't be possible with me here, I struggle often to just stay under the 10,000 character limit.

Sorry to hear about your seasonal affective disorder, I'm guessing you've tried the full spectrum lighting? All the usual things suggested for it. HEY...I just thought of something...maybe you need 'asd' spectrum lighting, baawawawa!
(I sure hope you're laughing, hate it when I'm only amusing to myself).

[silentmiaow]

the interview was here (http://blog.donnawilliams.net/2007/07/03/putting-autism-on-trial-an-interview-with-amanda-baggs/)

[milivica]

OH man, that was so good. I started to cut and paste stuff you said so I could post here and say, "this is what I meant, and this, and this too" but I would have practically posted you're whole interview.

I took ballet too, cause of my 'clumsiness' (they didn't say poor gross motor skills 40 years ago, they said clutz) and cause of my curved spine and slouch, my body looked like the letter S with 2 toothpics on the bottom from a right profile. I seem to remember something about leg braces for my 'spine', dunno why it wouldn't be a back brace. Anyhow, didn't happen thank goodness. Now, me in ballet, was like the tinman with no sense of rythem or timing, in ballet. If you imagine someone frantically swatting at bees, that might be me trying to make my arms and legs do what the arms and legs I saw, were doing. I remember being told to stop goofing around, be serious, I was seriously trying - can't help it if I had movements more like tics than grace. Though I could and still can do the 6 positions, those I liked, I've always been strangely flexible or double jointed I think it is.

I loved the costumes and leotards, always did love dressing up. But I had these horrible sores on the upper insides of my legs, some kind of warts, that made tights h*ll - as did my 3+ years of Catholic school tights and WOOL uniform, I am allergic to wool, especially when it's 80 percent humidity and 90 degrees. Though, maybe it was poor man's chelation in lieu of a sauna?

Eventually some barbaric doctor took cuticle scissors and cored the warts out, like you would use a knife to core an apple. That was about the only time I remember fighting back, I just could not force myself to be 'good' that time. With some nurses and my ma on top of me, "You have to be a brave soldier!" and humiliated at my unrespectful=uncooperative behavior. I think my ma was all other, no me, some self. All the warts grew back, I still have the 30+ scars. Finally some nice doc just dabbed something on them, boom, all gone.

Ok, so I drifted off there.

The fantasy world, omg, yes. Ever talk out loud, hear your voice, not realize it was your voice until you had to assume it was cause everyone was looking at you calling you psycho or whatnot. I was labeled paranoid and other labels that meant 'crazy'. It was easy being crazy, cause so much less was expected and so much more was 'excused', but I can't say anyone saw me as a real person, just a bunch of symptoms or something. Funny how, all my time in Catholic school and with Catholic relatives, I was taught the stars are windows with the angels looking at you at all times, to report to God everything you do wrong - AND THEY CALLED ME PARANOID when later I'd say I felt like I was always being watched. Gee, ya think? Ahhh, organize religion, gotta love it, gotta live it, then if your lucky you get over it (the people perceptions and rules I mean).

I remember horrible fears sometime in high school, that I was a 'dream', that I was a 'hallucination' and should I actually dare to consider this as reality, should I ever consider this as a truth, it would become truth, and I would disappear never to be again, never having been either. Does this make sense to you? I just don't know how to explain it at the moment. That might have started when I heard that saying or poem about "there once was a man that dreamed he was a butterfly, but what if he was really a butterfly dreaming that he was a man". Like reality wasn't my strong point. Endless ponderings that caused much anxiety were. I still tend to ponder, rather than DO. Which annoys me with myself.

Also, I really don't get the thing about you having critics, critical of what? You speak for you, if it relates to others fine, it might and it might not. You speak from your knowledge of self....when women describe labor it just is what it is, I heard some woman once say she got orgasms during labor - I believe her, but can tell you that sure wasn't my experience. I'd like to know what drugs she got that's for sure. But like she didn't have to qualify it, I didn't have to qualify my experiences with labor....all of ours are different, from a 1 to 10 on both the pain and joy scale. You just say what stuff is that is often intangible, that often a person doesn't think about, it's very cool cause you've really thought it out. I don't understand the room for criticism. Also you don't knock others. I get all wrapped up and hyper and impulsive sometimes and do that, and I don't like when I'm that way. You have provoked a lot of thought in me, unfortunately it sometimes has lead to me realizing I posses one or more of a dispicable quality you list, without realizing I did...but that's ok, cause I never said I was good, or perfect, or know it all. But I am willing to learn more, and for some reason when I learn from you, it doesn't have to be hammered into my head, it just fits.

OH the boxes, the neat little boxes. Yes, I've been just too HFA for some, always for someone that doesn't know squat about autism though. My husband just read your interview with Donna, omg, he was like, "Gee hon you said this, and that, just like Amanda....I thought you were doing this and that on purpose" Ugh!!! Why does everything that gets into his brain always come from a source other than me? When we were only friends, he totally believed me, I tell him I gotta question a man that takes away I.Q. points from me cause I married him, ya know? Should be the other way around, right?

Oh back to the boxes....and....assigning someone an age. I too do not like the overall age thing. In my son's gross motor skill box he has been at leat 21 since he was about 4, he rocks. In my son's receptive and expressive communication box, I'd have to break that down into subboxes - let's just use four examples...if communication is intonation, ability to read body/facial language, ability to gain meaning from words, ability to use words (sign, keyboard, write on paper is the same to me) then he'd be for sure at age level for getting intonation both receptive and expressive, so 11. He'd be like a 4 or so for reading body language, for using body language to express himself the same, a 4 or so. For using words, well articulation not so good I can't even assign an age, he can be very hard to understand so he is just over what ever age that is when only the mom can understand him really well. For understanding my words or other's words, he's probably at age level. For understanding the MEANING of the words when all put together, geez, not so much, at times less than a baby I think, cause at least a baby can read expression and so on. So, I suppose I don't mind assigning an age, but it has to be box by box, subbox by subbox, see what I mean? Of course, since all those boxes are in one BIG box which is the self, it's often not possible they don't all effect one another, like there's no truly separate 'box'. He IS getting darn good at referencing, so that's really nice, helps him a lot with communication, helps him enjoy communication rather than doing it either for necessity, or to bombard the poor listener with weather facts.

Woops - Vince is home, said his day was 'good' and that he went swimming. Which would explain why I smelled chlorine when he came in, not that I thought to ask, it just was what it was - a boy smelling like chlorine. I really need to evaluate stuff a little better, yeesh.

You ROCK Amanda.

[silentmiaow]

I went through a similar reality thing in high school, I was told later that some of the abstraction parts of the brain come online at that time and can cause that kind of confusion. I read about that butterfly in a book my brother owned (maybe Turbulent Mirror?) but I can't remember if that started off my questioning or just contributed to it. I did hear all the time that people make their own reality (this was California, it was a really common new age belief there, along with many other beliefs I was taught as a matter of course that later I was accused of being crazy for repeating) and so I thought if I believed something hard enough maybe it would come true. If it didn't come true I wasn't believing hard enough and had to try harder. If I was treated badly for believing it then I just had to bear it and try harder. I was almost out of my teens before I reconciled myself to things not working like that, and decided my fantasy world was sometimes a good source of metaphors but would never become reality no matter how much I wanted it to.

[milivica]

Well, in ways I do believe you can make your own reality, but it would have to be by lots of denial, lots of fake or substitute fulfillment instead of real or automatic fulfillment. I'm not sure if I'm using the right words here. If not, feel free to say what you think I mean!

Hey, now that's an original saying I made up, that you might like. I've always said, "Listen to what I mean, not to what I say". :)

I was pretty deep in fantasy, like the fantasy world was always going on, was always 'running' like a film reel in my head. I felt like I should force myself not to, thought it was for kids or I was too old in high school or junior high, but fantasy was my only social life. My self comfort too. So, if someone said something mean to me, I made the excuse that they had to, because no one could know I was 'so and so', an important princess that is beloved by everyone in the world or the enemy might capture me. I made the world fit into my fantasies. Can you imagine the confusion of the first guy that asked me what my 'fantasies' were? Well wow he got an earful and none of it was about sex I'll tell ya.

I read what you said about lsd, I think pot had a similar thing for me, except rather than altering my behavior or mind, it altered others I smoked with to develop these strange infinite philosophies I already perseverated on, only now I had someone to discuss endlessly WITH me, instead of avoiding me, so I fit. Lsd made me a real comedian, I was 'on' for sure or in 'the zone'. I got lucky, I only did a little, half a blotter - I heard it could make you hallucinate big spiders on you so that pretty much kept me from it. I did 'safer' drugs like pcp, opium(ew, like smoking perfume), hash, pot, and probably a lot of oregano accidentally. Now I don't even drink real beer, just non-alcohalic kinds.

[silentmiaow]

Can you imagine the confusion of the first guy that asked me what my 'fantasies' were? Well wow he got an earful and none of it was about sex I'll tell ya.

I have gotten in trouble the opposite direction, talking about 'fantasizing' without knowing it had sexual meanings, and then getting treated like I was just acting innocent when I really had no clue what was going on.

And, yeah, I don't do drugs anymore either, have never even had alcohol (except once during a Communion) or tobacco.

But yeah, I was an elf and I was only here until my people took me home (read similar in mythology and had been told that I looked like one), or I was not even a physical being at all but part of a collective that created everything and could talk to me in my head (read that last one in a new age bookstore that said any sort of misfit like me was one of those things) and here to observe and take notes on humans, or both, etc. In my fantasy world anyway. I didn't really have a film in my head, I had more of a feel, like I would try to move through it.

I also thought maybe I could change waking into dreaming and dreaming into waking if I tried, so I would go places in dreams and act like being awake was a big dream. Psychiatric drugs made being awake feel foggy and dreamlike anyway which made this a lot worse. So I started treating reality like any 'other dream' and boy did I get in trouble for that one.

[milivica]

Ohhhh, yeah others do tend to tag sexual meanings onto EVERY fantasy, especially if you have a shrink that is a Freud fan like mine was. Yeesh.

Wow, some stuff you said reminded me...I wondered if I was some female 'Jesus' put here to suffer at the hands of others words and actions. That might have been a combination of trying to explain me to myself when there was no such term as asd (not that I knew of) combined with the notion you get as a Catholic that being a martyr is a good thing. Something like that.

I totally had film reels though, as well as great sound tracks. Not words though so much. Music went with the film mostly. Funny cause Vince talks lots about the videos in his head. I had trouble sleeping, cause I couldn't stop my 'imagination', and wow I really had trouble turning OFF the music in my head it was so loud, especially during school. I did realize I was the only one hearing the music, but it was so CLEAR, and at times almost became like a torture thing cause it wouldn't shut off. Finally I got it to turn down low, I forget when it faded all together. I could play about any instrument by ear, still can - but not well or anything! I know the note I want, it can take me a few tries to locate it. I know chopsticks, heart and soul, and Beethoven's Moonlight Sonata on the piano - cause I really liked the song when I heard Bugs Bunny play it once on a cartoon.

Also, I had trouble seeing with the distraction of what seemed to look like tiny bacterias on my eyeball, but I could actually see them. I still can if I try to, so I try NOT too cause it drives me nuts...and they're never seen directly, they're always to the side of my vision. I can always see them when I try to look in a microscope, and have gotten others to see them looking in a microscope too. They seem to be on the slide, until you realize they move when your eyeball moves.

[tgrimes]

hate to even bump this thread, but this thing has been really bothering me for two days, I know I am not going to get over my anger on it until I get to the inital problem, so here's my attept at such.
miaow - in case you are listening, something I read in (or should i say into) your posts angers me, but then I can go over it, and think those same parts are vague, broad-based and sometimes just factual, and I keep wondering how do I read them as provoking?
I know someone reading this might say just get over it, but I am not talking about a simple annoyance kind of mad, I mean the blood rushing to my face kind of mad, so this is not some simple thing to ignore.
Also, I of course lie when I say I am not listening to your posts anymore because I probably will, (albeit angrily).
I do know I can learn something from you, and those that share your passion for the different view you support, I think I just need to undersatnd first your writing.
I wouldn't want to say that unless I gave you an example:
"Some people do find it divisive to see opinions that differ from their own..."
Now, I don't know if this is intended to sound like some kind of passive-agressive backlash, or whether it's just a fatual textbook-type statement, which is actually your writing style a lot, so I don't know what to think. And then I dont't know if that's what you wanted, someone to not really know what you really said.
But I DID understand laugh pretty hard at your joke, so thanks for finally sharing the light side of your personality.
So, just saying... don't be any more silent than you already are on my account.

[milivica]

Hey Grimey, I don't intend this as a punishment, but I'm going to post - which means it will be way longer than if Miaow did :o , and, I only can say what I think as an observer, I can't know what you or she think. I will say I took it as factual text book type statement. About how some people are.

The statement in question:

"Some people do find it divisive to see opinions that differ from their own..."

was in response to you stating, that after reading Miaow's site, you can see why the whole neurodiversity movement is divisive.

Miaow's response was actually:
"Some people do find it divisive to see opinions that differ from their own. I don't. I also think sometimes people find it divisive to have division that has always existed, pointed out -- it makes them feel like the person pointing it out has created the division. I haven't created any division, I have just attempted to explain a division that already exists. It won't go away if I do."

The meaning I got from that was:
Some folks find it divisive to SEE opinions other than their OWN. Sometimes people blame the 'messenger' for the hard truths and insights they receive - they enjoyed a life blissfully unaware of the 'message' and did so successfully till the 'messenger' enlightened them. I am often the messenger. I did not create the message. It is my duty to show the message. The message can change for the better, too many lives, for me not to show it. I must, and will. Don't kill the messenger.

[tgrimes]

Oh, yeah, it sounds a lot better when you put 'folks' in there in place of people. I get it now.

[tgrimes]

Got you right? That's what you get for the bad hair joke earlier. :)

[milivica]

OOOOohhhhhhhh you read that! Geez I forgot about it already. Hee hee.

Oh rats, I forgot a pun I wanted to include in my last post...maybe you are having trouble with some of the meanings of what Miaow says cause of your PTS from that poster you mentioned in the past.

GET IT....PTS, POST TRAUMATIC STRESS. Get it, do ya, huh, do ya!
Post=past, post=posts on the forum.

Baaaaawwawaaaawawaaaaawawaaaa!!!!!
Ahhhhhhhhhhh, I kill me.
(Same on me, I take meds for pts)

[tgrimes]

Too funny.
but back to the point... You do not see any double-meaning? And Not just that one sentence, that is just example.
Just curious... I intentionally put at least one of those things in what I wrote earlier to miaow, something that can be taken two ways.
Do you see that?

[milivica]

Ok, well first of all, I had to look up the word divisive. So, I had trouble enough finding ONE meaning. It was the way it was used, I just didn't get it in Miaow's sentence that bugged you, though I did get it in yours about neurodiversity being divisive. I've just never used the word.

I 'can' see that double meaning thing your talking about, but I didn't. Which sentence, like, tell me the post. See if I can find it.

Ahhhhh, wait. Do you think, between the 'PTS' and the fact you had a double meaning, you were inclined to believe back-lash was her intention?

Because I know (or assume I know) Miaow's intentions, I doubt I'd see back-lash even if there was, though in this case, there was none and that's why I didn't see it.

We all 'judge' others, by using ourself as a standard automatically, if we are not deliberately aware not to. Ya know? I mean, it's natural to automatically assume another's intentions are yours, you only know what it feels like to be you, you only know what your brain thinks like.

Back when, that's why it never dawned on me, that people lied - I didn't lie. Even when I could clearly see someone was lying, I always assumed there must be some confusion on my part or their part, but nothing deliberate.

[tgrimes]

...maybe you are having trouble with some of the meanings of what Miaow says cause of your PTS from that poster you mentioned in the past.

)

Yeah, a lot of that... serious, do you remember when lucas used to say those double-meaning things, it would get me so mad I would be throwing porridge. But now, you figure he is a real person? I thought he was a message-board troll.
I was looking around on those old boards and trying to find that, but I think it was after 2003, because I finally registered to post after sept 2003.
Geez, see now this is starting to come into perspective for me...
Here I am, when I should be sleeping, thinking about old troll posts, oh, get a life.
I miss my theo, wahhhhh !
And even dhhhhhh

[milivica]

"And EVEN dh", hee hee.

Hey don't forget to tell me which post of yours has a double meaning in it, I want to see if I can find it. I'm really curious to see if I can.

Though I 'can' see those things, I still don't see it in Miaow's posts, not even that one sentence of hers with 'divisive' in it. I don't know what else it could mean, it was just factual.

[silentmiaow]

I don't think he was a troll, just someone with a point but socially awkward about making it. (Not that I fully agreed with his point, but I knew him a lot of places, and he didn't seem to be trolling, he seemed serious about what he meant. And he had the same communication pattern a lot of autistic people I've seen online do when extremely emotional about defending their viewpoint.)

I didn't mean passive aggression certainly. I wasn't sure how to say what I was thinking without putting people into that category that I wasn't sure belonged or not. Sometimes I stick to statements I am reasonably sure of rather than making ones I'm not. (A habit I've picked up because I used to have a tendency to give explanations even if I didn't have an explanation, which has had disastrous consequences at times given what I came up with as a substitute for the words I couldn't figure out. So I've tried pretty hard to curb that habit.)

[Isabelle]

i haven't read all your responses but when i introduced my son to other people i did it by his name, to introduce him as "autistic" didn't mean a thing to him, so, why using it in his presence when i sensed that he thought of himself as "normal" or "equal" to his siblings even older of some neighbourhood kids?
"autism" to me also means something elusive, immaterial, a bunch of "symptoms" or "behaviours" not equal to all "autistics", so is hard to put the finger on, is not like being a diabetic, or epileptic, down syndrome, but even if my child had all those conditions foremost he is a boy with a name, he is a human being, treat him with respect, that was my message to all the people i introduced my son to.

[milivica]

SilentMiaow!!!

I was in a book store tonight, walking past the laminated 'Quick Study' academic guides, these words POPPED off the page.

Ethical Absolutism

I didn't know what it meant, but I like anything ethical, it said:

a. Unique moral standard that is universal, eternal and static.
b. Undiscovered but there is only one true moral standard.

I thought of you right away, so often when I hear you, I feel you represent Ethical Absolutism in your heart and words.

The whole Quick Study sheet was so cool, I actually bought it. It says stuff like:

Simple Ethical Relativism

No single objective moral standard that applies to all human behavior, claims that morality is always relative to time, place, and social group.

Subjectivism

What are ordinarily called ethical judgments lack a truth value in that they are neither true or false, but not both, or;
ethical judgments are bearers of truth values and are never about psychology of person who expresses them and only that person's psychological state.

It's like reading a fortune cookies of someone that was really smart, and really high! LOL. It's so darn cool.

If you want, I'll be happy to send it to you, if you think you'd be interested. It really reflects so much of what I've heard you say in your own words, you might like it.

OR

I haven't actually understood what you've said, think I do, and you'll hate it. I always feel insecure about assuming I really REALLY know what anyone is saying. Experience has shown me, I often misinterpret, comes with the territory(asd). When enough time passes, then I can know weather I am talking about different topics in a parallel way with someone, but believed they were the same topic. Do you know what I mean? I worded that weird, couldn't think of any examples. OH, example, like on the movie Something About Mary, when Ben Stiller was taken to the police station and questioned - they were talking about a corpse, he was talking about a hitch hiker....each believed they were talking about the same topic. Happens to me CONSTANTLY. Really frustrating.

But I do think I understand your message. If you ever get tired of SilentMiaow, go with TheMessenger. Or Poccahontis, that fits you too. You rock, you're awesome, I never feel like I'm 'nuts' when I read what you write, or watch your videos.

[silentmiaow]

I don't know if I'd characterize myself as an absolutist, but certainly not a relativist.

What I think about ethics in general is closer to:

1. There are some things that are right or wrong in all, or almost all, situations.

2. There are some situations where something that is usually right would be wrong, or something that is usually wrong would be right.

3. There are differing amounts of options in different situations, and often the amount of options you have (which often includes the amount you can perceive, because in a lot of cases it's hard to do something if you don't know you can) limits how right or how wrong a thing you can choose to do.

4. There are some things where whether something is right or wrong depends on things like culture more than it does on any absolute right and wrong (where I differ from a relativist on this is that I don't think it applies to all things).

5. It's impossible for everyone to do every right thing possible, and often there are many ways of doing the right thing, and for that matter many ways of doing the wrong thing. There are often many right (or mostly right) courses of action.

6. There are a lot of grey areas between right and wrong, things that are right in some ways and wrong in others, and that's the most common kind of thing you'll run across, but the idea of grey areas is often misused to justify something as right that really is pretty wrong, or to do away with the idea of right and wrong altogether and criticize anyone who thinks something is right (or mostly right) or wrong (or mostly wrong).

7. What is considered moderate or neutral on a particular topic often benefits whoever has power in a certain situation (who may or may not be whoever looks like they do), or the status quo in general, and thus isn't always as neutral as it looks. Especially since what views are moderate or neutral is entirely dependent on where the extremes are. (For instance, a moderate view on women's rights in 1890s USA would look unbearably sexist to the average 1990s non-feminist American, and a moderate view on women's rights in 1990s USA would look unbearably radical to the average 1890s American feminist.)

I'm not sure if that fits into either category.

[milivica]

I don't know if I'd characterize myself as an absolutist, but certainly not a relativist.

If anything, I understand most of what you say as altruism - I too would not call you an absolutist though see much of what you say as Ethical Absolutism (remember, I just got this study chart with all these big words, so I'm still getting the feel for these words) according to the definition on this Quick Study outline...moral standard that is universal, eternal, there's only one true moral standard...not one for nt's and one for asd's.

7. What is considered moderate or neutral on a particular topic often benefits whoever has power in a certain situation (who may or may not be whoever looks like they do), or the status quo in general, and thus isn't always as neutral as it looks. Especially since what views are moderate or neutral is entirely dependent on where the extremes are. (For instance, a moderate view on women's rights in 1890s USA would look unbearably sexist to the average 1990s non-feminist American, and a moderate view on women's rights in 1990s USA would look unbearably radical to the average 1890s American feminist.)

I'm not sure if that fits into either category.

This Guide has words similar for what you said, I think it was 'Simple Ethical Relativism' No single objective moral standard that applies to all human behavior, claims that morality is always relative to time, place, and social group. What ever a particular group (in a specific time and place) thinks is right, is right.

I think Simple Ethical Relativism applies to your #1 and #2 above too.

Wow, this Guide doesn't have a single picture. All these words. My head hurts!

Mili

[milivica]

Hmmm, maybe your example is more this:

Conventional Ethical Relativism holds that there are no objective moral absolutes. Instead Conventional Ethical Relativism recognizes the cultural and social nature of morality. Morality is relative to the norms of a particular culture. Therefore, an action is considered morally right or wrong depending on the moral norms of the society in which its is practiced.

Ok, gotta go read something less 'constipated' for a while. I'm trying to finish one of several Martin Luther King, Jr. books...he was such an amazing man. All I hear him say on videos, all I read that he's written, totally is transferred somehow in my head from civil rights (for blacks and all people) to civil rights for persons on the spectrum and all people. Basic decent human civil rights for MY kid too, that's how I hear his words.

[tgrimes]

.... if my child had all those conditions foremost he is a boy with a name, he is a human being, treat him with respect, that was my message to all the people i introduced my son to....

I second that!!!
I wonder if this could happen in the public school system some day....

[tgrimes]

I didn't mean passive aggression certainly. .)

Well, good then.

Re: not understanding lucas, the way I understood him was he insisted everyone share his view, and if that was a quality of his autism, then it was one he needed to seriously work on, instead of moving forward with "since I have a problem with ( fill in anything ) , it should therefore be globally accepted by all people dealing with autistics..."

*bullcrap

[tgrimes]

Mili - funny you brought up ethics, it reminds me of how theo is full of logical fallacies to argue getting his way on something, to the point where he can dupe his brothers (and lots of other people) into an "oh, right..." moment only to figure out later it doesn't make sense.
But if someone uses fallacious logic in their argument, he will ferret it out right away.
That is a huge skill for his age, and especially when compared to other abilites that a lacking. he definitely got gifted in that.

[milivica]

That is a huge skill

YES! It is, that's exactly what the consultant told me, about Vince making excuses to get out of work....my back hurts, I'm tired, my feet hurt, etc... Used to annoy me, all these excuses, till I looked at it as development, now I just smile. My baby is growing, cool!

See, how you figure stuff like that out without a consultant, that's very cool. I don't. I do with my kids better than other kids, but not as well as I'd like to. I like the different twist, different perspective, she gives me on my kids. It's been a very long road for me, to stop being all "I'm your mother and you will do what I say" and nothing else, no other parenting methods or thoughts. Those days stunk for all of us.

The Quick Study chart I have is Philosophy. It's really awesome, it has 1-3 words to describe paragraphs, you know, my quest to 'summarize'. But that whole 'ethical absolutism', actually the whole Non-Normative Ethics section of the philosophy guide is so cool. Just reminds me so much of being a kid, and how the hippies used to talk about stuff. Endless ponderings - guess you can do that when you're still living with mom and dad and getting stoned outside the laundromat. (them I mean, I was there actually doing laundry with my ma - when she could get me away from the nonstop hole digging, that was my 'thing')

But I'll tell ya, I haven't even tried to read the second page yet, this stuff can make your head hurt. All these words and their deep meanings. At least when you're not used to them. I'm just kind of 'trying them on'. Once I can 'feel' the meanings and really understand them, I can bring them into IEP's. They complained about my language (a few years ago) when I'd say the 'f' word, they're going to miss those days, hee hee. this whole Ethical Absolutism is a lot of what I want for Vince at school...one true moral standard, if ya don't lock nt's in the closet my kid shouldn't be either. How can that be right?

It's still a real shocker, to be in the process of 'getting' just how much schools can do to your child, when no other person or entity would be permitted. Ya know?

[tgrimes]

YES! It is, that's exactly what the consultant told me, about Vince making excuses to get out of work....my back hurts, I'm tired, my feet hurt, etc... Used to annoy me, all these excuses, till I looked at it as development, now I just smile. My baby is growing, cool!



So glad to hear she is pointing that stuff out. Theo had a phase I dubbed the 'self-preservation' phase . This is where he developed a real tough-guy personna, and I think some of his behaviors he actually purposely escalated in order to scare prople, if they were scared of him, then they wouldn't push him past his level of tolerance. He did pretty well on that.
The last couple of years he has spent in a sort of "defining limits" phase, where he feels comfortable telling people exactly what it is about something that requires he avoid it.
But... I can see him moving on from that phase, too. For example, the things he avioded and then later felt bad about not being able to do, that I would call maybe a "questioning his limits" phase, and I definitely see it coming, and doing him some real good.

Just curious what your consultant says to do about vince's requests for a break?

[silentmiaow]

I very rarely used excuses to get out of things. The only time I remember doing it at all was when I said there was Jupiter gravity and therefore I couldn't get into the bathtub (I knew even as I said it that in Jupiter gravity I wouldn't be alive or talking, and this bothered me). Quite often I did things even when I did have pain or other things that would make it really hard to do them. And drive myself into meltdowns in the process if necessary.

I can remember being in such severe pain that I couldn't stand up, once, and wondering why I couldn't stand and whether I was just lazy. I spent a month or two almost entirely lying in one spot because of that, before a friend insisted I see a doctor. I had to actually recondition myself to sit at an angle and then stand up after I got pain treatment because I'd been lying down so long. And most of that time it never occurred to me that pain was a legitimate reason to be lying there. And that was real pain, not even feigned pain. I had to be taught to take it slow with things and I still find it hard to do nothing even when medically I really should rest. (These are really bad traits to have, I know. Possibly less annoying to parents than someone using excuses all the time, but possibly also less healthy.)

That's the level of disconnect I've often had. I never "came down with a math test" or anything else like that to stay home from school either. My mom forced me to stay home some days though because I was so distraught because of the bullies that she thought I ought to not go to school. I also often had to be forced to stay home when sick. And I hated school, so... yeah. I hear the creative things a lot of people have done to get out of things (like my staff person with joints more hypermobile than mine who dislocated his thumb and bent the tip backwards and claimed to have broken it to get out of class as a kid), and I find them funny, but I didn't do them.

[milivica]

Just curious what your consultant says to do about vince's requests for a break?

I can't remember her saying anything specifically about that. I know he gets gobs of them at school. Sometimes cause they can see he needs some sensory stuff to self regulate. Sometimes cause they know if they try and make him do something it'll be a disaster, so they really just babysit him all day. The new school, I'm not completely sure yet. I'm speaking about the old school.

Can you give an example of what you're wondering, I mean I'm assuming you are wondering about breaks related to Theo and studying, is that correct?

[milivica]

I hear the creative things a lot of people have done to get out of things (like my staff person with joints more hypermobile than mine who dislocated his thumb and bent the tip backwards and claimed to have broken it to get out of class as a kid), and I find them funny, but I didn't do them.

That's a good one.

Unlike Vince, I don't think I often made excuses to get out of work (which would be functional!) but I'd sort of, I dunno, unintentionally debate every little syllable out of other's mouths. Maybe cause I didn't get the 'meaning' often, plus was not able to appraise the important information, in a sentence, to focus on. Like, I'd start correcting grammar, or judging the moral value of a statement in a way that insulted the person (though I didn't realize it at the time). I'd give moral and ethical 'advice' especially if someone said anything about their pet or any animal. If I deemed their statement as cold or inhumane, weather I was in the conversation or even knew the people talking, I'd butt in and give what I thought was the RIGHT way to think (my way). God forbid I hear someone in the elevator say, "I hit a bird on the way to work, feathers and blood all in my grill and I just got the car cleaned, damn bird". OMG. I'd do my utmost to 'help' them realize how the bird must have felt, if that meant following them into their place of work, to their desk while still yacking, seeing their name plate and using 411 to call information, get the number of the office and ask for them, so be it. I could not quit, till they saw my point, my side - the side of the animal. Basically, it never dawned on me, that people think differently than me, not 'wrong' just cause it's not the way I think. Also, I think I tended to get responses from folks cause I'd anger them so, they had to respond to me, then I was mystified and hurt. Why are people so mean all the time? Well hello, you just lectured a stranger about what a jerk they are. But see, back then, I didn't see it that way. I was actually a lot like Lucas in my approach with people, but, never ever did or said anything to purposely hurt another. Once someone said, "that hurt my feelings" or "you're being mean" I'd totally apologize. At first I really understood him, but then started taking stuff personally. Plus felt concerned for others. I find it hard to see very verbal aspies as DIFFERENT than me, almost everything they say reminds me of myself at one time or another in my life.

I absolutely could NOT let it GO. Can you imagine, a grown woman in the work force, I had my own condo I bought, everything on the 'outside' was nt, I had no dx, had no idea what was wrong with ALL the people in the world, and wanted to change every one of them. Though I'd still like to change people when they can directly influence the happiness and success (or not) of my kids, it's a different feeling. They don't need me to 'enlighten' them, but my kids need them to be enlightened, know what I mean? At least during school hours, I don't care what they do or think on their own time. Before, years ago, I would have. Mind you, I never saw my 'flaws' or how I could be 'wrong' or 'irritating'.

Ugh. What memories.

Miaow, about you and pain and disconnect. I hear ya, not realizing your not lazy and that it's legitimate, and just how serious. When Carmen was about 3 months old, I almost died. I was in so much pain, but thought I should be able to take it, I had mastitis, it's way more than just sore boobs, it's the worst pain I can tell you, from head to toe, and you have to keep nursing. Anyhow, it was my 7th infection in a row, dh had to start a new job, so I didn't want to wake him up, had no idea how to measure and balance and prioritize what was more important, just didn't think it was 'right' to wake someone that was going to work the next day. The insides of my ears and my lips felt like they were being burned with acid, but I did not know that was 'priority' or I should seek help. Hard to explain. Eventually, around 3am, I believe I died or almost died, the pain went away, I felt so light like I was floating, and had a sense of peace I could never describe. I wanted to stay in that pain free peace. (didn't see a tunnel, so that worries me some!) In my brain, I shouted out to myself "you have to open your eyes" and finally did. When I did, the pain took me over, I drove myself to the hospital, they found me in the parking lot with one leg still in my van. Or so they said. That's how sick I was. I had 105 fever, I remember seeing my buttons flying through the air, like in slow motion, against the big round light as the doctor burst my shirt open. I lay on this narrow hospital thing with sheets and railings, and the Indian doctor yelling at me in a beautiful accent that I should not have waited so long, "You cood hov died, you mahst take betta care of yourself" or something like that. Then they gave me an IV, and I swear in like 2 hours I felt great (by comparison).

So it struck my heart, when you say it never occurred to you the pain was legitimate. Me either. Not even when it was life threatening. Does it make you angry? Cause it makes me mad, that I don't know my own body that well, it's like I'm not friends with mySELF. Hard to explain. I suppose it makes me mad, cause I don't know how to reverse all the adversives I was taught, and adapted as 'good'. Do you know what I mean. It's upsets me, to feel I don't know mySELF. I don't like that.

I've seen Vince do it too...remember going into his room and seeing ooze coming out of his ear. His ear drum had ruptured, he never said a word. Now, thankfully, he does seem to know his body. I love it. I'll take his weather analogies on puberty and all the complaints in the world, over the alternative of him not knowing himSELF. Music to my ears.

[tgrimes]

Can you give an example of what you're wondering, I mean I'm assuming you are wondering about breaks related to Theo and studying, is that correct?

I meant what you said above:

>>> exactly what the consultant told me, about Vince making excuses to get >>>out of work....my back hurts, I'm tired, my feet hurt, etc...

Those are requests for a break. (right?) I was wondering your response, and if any comments from consultant.
I dont' know if your'e talking about a consultant video here (or the video in your head :) )

What I do with theo is just wait till he's ready. this doesn't apply to just schoolwork, it's everything. I'll postt about his ' timer' thing later.

[silentmiaow]

Yeah it does make me mad. And I've also had it in life threatening situations and not known how serious it was. Once I needed emergency surgery and was still trying to just function and wondering if the pain was all in my head (and the few times I'd managed to communicate it nobody got the seriousness of it). By the time the surgeon got to me he was angry on my behalf and angry at the doctors for not looking closer because I was really screwed up inside. He wrote a nasty letter to one of the specialists I'd seen.

Now I'm actually dealing with something similar, probably not life-threatening. My neck is spasming on one side enough to be noticeable by feel. If I move my neck different ways I get pain and tingling in all four extremities and lightning bolts down the side that's spasming. My range of motion is visibly impaired on one side. Sometimes the pain is so bad and so widespread I start screaming. But still I was surprised how seriously my friend took it, she's going to accompany me to the doctor and tell him that nobody is realizing how much pain I'm in and how severe it is, and everyone's treating it as just part of their specialty (even if their specialties are totally different) but somehow none of them are neck or spine specialists. And I'm still wondering if she's right or not. She was adamant on the phone to the nurse though, really mad that nobody's noticing this but her (because she spends the most time with me and can read my body language, and knows that I under-display pain just like her pet parrot does, so if I'm screaming in the middle of conversations it's bad, I guess). I've got anti-muscle-spasm drugs and they work temporarily but they aren't solving the root problem.

I had something (may still have to some extent) similar to what you describe about having to have people know my view. I don't think I ever tracked anyone down at their office, but I was still pretty extreme. I called it bulldozer mode. It often occurred with a fair degree of lack of comprehension, like the only language I could track was that I was right and they were wrong and here was how to prove it, but I was holding tenuously to that and about to fall off, propelled only by angry energy. Yecch. I don't like being like that.

[tgrimes]

I very rarely used excuses to get out of things. The only time I remember doing it at all was when I said there was Jupiter gravity and therefore I couldn't get into the bathtub (I knew even as I said it that in Jupiter gravity I wouldn't be alive or talking, and this bothered me). .

Miaow -
this is going to sound like I am an 'enabler', but if that happened to me with one of my kids, I would spend the rest of the week or the month finding a way to help him 'dejupiterize' the bathtub.

Mili-
What would you do ?

RDI -
WWRDIDO?

[milivica]

I meant what you said above:

>>> exactly what the consultant told me, about Vince making excuses to get >>>out of work....my back hurts, I'm tired, my feet hurt, etc...

Those are requests for a break. (right?) I was wondering your response, and if any comments from consultant.


Ohhhh, well she said that was a developmental thing, that he was negotiating to get out of work (I think she said negotiating or trying to negotiate his way out of work). She said it was a GOOD thing, development. So now when he does it, I'm like all happy, instead of annoyed. But no, doesn't mean he needs a break. If he's watching a show he likes, and I tell him it's time to go out and pull weeds, he just wants to watch his show of course. He's a kid, his life IS a break, lol. Well, at home anyhow.

Also, don't forget we've been working on regulation/coregulation, the stuff Vince calls 'We'. There's much less I have to ask him....for instance, if he sees me walking in with groceries, he hops off the couch "Let me help, that's too heavy for you, weeeeee, weeeeee". He's really hooked on feeling a part of things instead of parallel to them. Still, hardly a day goes by since starting 'we' things he doesn't tell me every night before bed, "We really had fun today huh mom." It's like he's experiencing what we do not in a parallel way, but as a SINGLE joint collaborative event. See?

[milivica]

Mili-
What would you do ?

If Vince said something like that, I'd know he was trying to get out of taking a bath. What I would do would depend on soooo many factors.

Most likely, I'd ask why he didn't want to take a bath. He can tell me why, and he would. If my main objective was just 'routine' I'd let him skip the bath. If he was stinky, I'd explain he's stinky and has to get clean for school, and see if he'd be ok with a ***** bath (pits and crotch) and let him do that.

If he was sad that day, I'd ask if bubbles would help the gravity dilemma.

If I could feel his 'mood' was right, I'd say, "Good, cause I wasn't going to LET you take one, don't you dare take one" then he'd immediately take one giggling.

If I was in a crappy mood and he smelled and had school the next day, I had PMS and was in a hurry, I'd probably say "I don't give a sh!t about Jupiter's gravity, get in the tub" or "when your in Jupiter then you don't have to bathe".

Vince and Carmen know there's no getting out of anything with me, once they start the "pleeeeease" it's like I'm locked, no way will I change my mind. Unlike dh, with me there's no whining or complaining your way out of stuff, he cannot embarrass me in public (or so he thinks). I have no idea if I'm just stubborn or aspie or both, but once I say how it's going to be, it's going to be that way - but I don't feel that way about everything, just a few things. Though there are exceptions, I have cracks that can be found, however just saying 'no' does not work with me. One time when I said no he got his way with me cause he said, "Oh mom, please let me do it...just to shut me up" and that killed me, I was laughing so hard. So he got his way that time. I forget what he wanted. Later I remember telling him that was only going to work one time, just to avoid future conflict I knew would happen.

[milivica]

GEEZ Amanda I'm sure glad you have someone to explain your pain - just reading what you said, it sounds definitely serious. I love it that you have someone to go to bat for you, but I would expect anyone in the pain your in would be helped! I know it doesn't work that way. I had a few TMJ bouts, I was sent away, said they couldn't even examine me in so much pain, I couldn't open my mouth. Well gee, how about some pain relief?

I hope you (and I) get better and going to bat for yourself. To understand that threshold or what ever it is, where you can KNOW that what you feel is RIDICULOUS to be expected to feel, and KNOW demanding answers is perfectly right to expect, and getting them. I hope I'm saying words that match my feelings.

I think it's wonderful the doc that helped you even went so far as to write that letter to one of the 'specialists' you had seen.

I still have so much internal damage (in my guts, holes and prolapses) from 30+ years of undiagnosed blockages, catalope sized bump sticking out of my gut, my face and skin a 'green' hue, ER trip after ER trip. Eat more fiber was all I ever heard. I don't have to tell ya what that did. Even my ma remembers me saying "I feel like I got bags of glass inside of me". But after so many years, that's just how life feels, so you stop saying anything. NO one helps anyhow.

Ugh...I got a bunch of things going on here, I have to post in a bit I wanted to say more, ask questions about your friend's parrot too. Yes, birds are very stoic. I have 10 at the moment, unless you can really read them, you won't notice they are ill until they are hours from death. Birds, I can read. Too bad my son's IEP team doesn't consist of a bunch of birds.

[milivica]

Being propelled by angry energy, yes, me too. I'm trying not to do that anymore, it's so so much nicer. I was not at all able to do it alone though, Paxil was honestly my first break, in the rage department.

Now I'm going through a heavy Martin Luther King Jr. phase, I hate to say phase, but don't know what else to call it. I just always loved everything he said, though growing up primarily in white communities I knew little about him, until I was an adult. The more I hear, the more I feel he is an excellent example, of the way I wish to think and feel - not to hate others, to know who to allay with to bring forth effective change, the whole nonviolent approach that violence only creates more violence, just everything about him. I just bought 2 books of his yesterday. I've tried to read his autobiography, it's just too 'thick' for me, I don't get it yet. It's very stiff and formal or something. The book I got yesterday is great so far. It's called Strength to Love. The other book was "Martin Luther King, Jr. on Leadership" and on the back it says stuff like:

- Get your message across by learning to speak your listener's language
- Forge coalitions, build consensus, and achieve strategic ********s based on the self interest of each party
- Obtain the right information from the right people

So while I seriously doubt I'll be able to do that, I couldn't do worse than the totally ineffective ways I've tried to get my son what he needs in the school district. So, I'll read it. Hope I really learn something, instead of memorizing phrases and words. Everything he says about the civil rights movement, just resonates with me - as a person that has generally been on the edge or other side of civil rights, and as a mother with an autistic son. I have every wish and want to be the person to change the school system and medical system for autistics, but do not have the ability. Reading these books is how I hope to get more ability,or, at least fill my eyes and mind and heart with MLK's words of strength and love and nonviolence and civil rights for ALL people, not hate and revenge and restitutions and so on.

Do you like or know much about MLK? You might really enjoy his inspiring bio, and words. I've often heard you say similar things as he did, can't say I ever recall you talking 'hate' or anything like that. Well, you know I just think your incredible...don't blush, your friend will think you're feverish! Bless her dear heart.

OH I forgot...what kind of parrot does she have? How old, what's it's name, where did she get it? Does it come over to your house ever? Does she have any other pets? I know you have a cat and dog, how are they? What are their names and how old are they and when did you get them?

[Isabelle]

I second that!!!
I wonder if this could happen in the public school system some day....

those parasites living off autism rejoice on presenting the autistic as "dangerous", "complex cases", a "mystery", they play with the average bureaucrat, the average person, be a parent or caregiver, they know the more "complicate" they presented the autistic (with several psychiatric disorders to boot) more money is given to them and, for the autistic in their care, more drugs to get them to sleep 18/20 hrs a day, perfect arrangement! less work, more money for their pocket.

Silentmow, isn't it a breach of "absolutist ethics" or a breach of limited "relativist ethics"?

[milivica]

Whadda ya asking her for, I'm the one with the three page laminated Philosophy chart (lol).

Seriously, making things more complicated, you are so right Isabelle. And that is exactly what messed me up so bad for Vince, poor kid. I really felt more confused than clear about him and autism, him having autism, autism having him...depends on the day you'd ask me as to what I'd call it. Allowed school so much power, thinking they could help him, the means were bad but justified if it meant happy life for him. I could never be as angry at school for what they did, as I am at myself for what I allowed thinking it would 'help' him. Though my heart was in the right place, that made it no less traumatic for Vince. Thankfully, I believe it has been harder on me than him (until last year).

Also, I think what you asked, would be not a breach but a total lack of ethics.

[Isabelle]

oops! i started with you, but in my mind was silentmeow....