Look at me, I'm special

[Seshat]

That's a point. My husband and I both showed up in the fuzzy area where Aspie meets Autism. So does the friend's kid.

If I had a kid like me, I'd probably find out what resources the diagnosis offered, get the diagnosis if it seemed like it'd be useful, and otherwise pretty much ignore it as a 'disorder'.

To me, a diagnosis is useful when it offers things like "these techniques usually help X kids achieve Y", where 'X' is any diagnosis, and 'Y' could be anything from eye-hand coordination and motor control to social awareness and human interaction skills.

A diagnosis which says 'oh, you're special' doesn't really help - I wouldn't want my hypothetical kid to be special, I want him/her to become a content (preferably happy) adult who functions well in society and achieves a reasonable percentage of his/her life goals.

So yeah, I'd probably tell my hypothetical kid's teacher that he/she is Aspie - and I'd talk with the teacher about what resources that opens for her and what techniques are worth trying. Otherwise, it's just the same as any other kid: help him where he needs help, teach him where all he needs is guidance.

[MystyGlyttyr]

I only do it because I literally went my whole life without realizing that not everybody in the world behaves the way I do. Once I got my diagnosis and had the revelation that "Hey, not everyone hates speaking with people to the degree of avoiding them, not everyone can't filter out background noise, I'm actually NOT just a spaz for having the attention span of a flaming gnat who cries because she literally CAN NOT make her focus stay on any one thing for more then five minutes, and it turns out that all this time, people have been asking me questions that, for whatever reason, they actually DIDN'T want me to answer. Which explains the pissivity when I did."

To me, it's like learning some brand-new language at this point to learn what people actually do. I equate to saying "Hi, I'm Mysty and English is my second language." Because to me, it almost kind of IS. I don't realize when I'm doing something "weird" because I went to a very small school in the 90's that had already accepted that I was just "eccentric" and no one even knew autism had a spectrum, let alone that I could be on it somewhere. My behaviors were just accepted as part of who I was in a very tiny community, and now that I'm in a bigger world, I'm realizing that not everybody sees me and automatically knows that I'm not just like they are, and I don't know the unwritten rules they do.

Basically, I'm trying to ward off my accidental rudeness ahead of time. I KNOW I'm going to say something inappropriate, and I'd rather people know that they should just tell me "Hey, you don't do that, because ____" rather than a bunch of people screaming at me for doing it and not tell me WHY. If folks would just do that in the first place, say "Hey, you shouldn't say that because of _____," and not just say "YOU SUCK YOU BITCH I HOPE YOU ROT YOU OFFENDED ME BLARGH," then it wouldn't be a problem for anyone. It's not been a big problem on CS, for the most part, but most anywhere else is a slushpile.

In short, it's just like...people always expect me to know the rules, and until I was 23, I didn't even know there was a game going on, you know?

[Seshat]

I know exactly what you mean, especially your first paragraph.

However, most of the time they don't understand what you mean when you say 'I'm Aspie'. They'll probably perceive you as meaning 'I'm special' - it's another case of indirect speech. That really frustrating, annoying, indirect-speech thing! Argh!

It's going to be a matter of learning what you can of social interaction, and if they start getting pissed off with you, you'll have to come up with an 'acceptable' response. They expect you to speak 'neurotypical' - very few of them are willing to learn to speak 'Aspie' or 'geek'.

A response that's helped me in the past is 'I'm sorry, I have a neurological problem. I honestly didn't intend to upset you - would you please help me avoid that mistake in the future? Could you tell me what I did to upset you?' Even with something like that, there'll be a percentage who'll claim 'you should know!' or something and storm off angry. But there'll be enough who are willing to help you that you'll eventually get the hang of it.

Side point: learning to speak neurotypical:

It can really help to study monkey interaction. Especially the great apes. Animal Planet had a really helpful program called 'Monkey Business', in which the narrator would describe what the interactions meant to the monkeys involved. The monkeys produce a simplified version of human social interaction - kind of 'training wheels' for us non-neurotypicals.

Other than that, spend some time studying human interaction as if it's your current fascination. Read psychology and sociology texts, learn about direct and indirect speech, and watch people in a shopping centre or other major gathering place. Once you've intellectualised what other people do instinctively, you'll have mostly beaten the handicap aspect of it. It'll still be a strain - I go home and crash out - but it'll teach you how to speak 'neurotypical'.


Edit to add:
The moment of 'OH! THAT'S why people behave like that' predated me hearing about Asperger's syndrome. It was a documentary about chimpanzees and bonobos, and the voiceover started saying how chimps who have a strong social instinct do better in the tribe.
My thoughts went something like: chimps have a social instinct? Hang on - HUMANS have a social instinct? HEY WOW! Maybe that's what's different about me! Maybe I don't have the same sort of social instinct as other people!
That's about when I started really studying human interaction, to replace my lacking instinct with a learned response.

[MystyGlyttyr]

Well, on the CS board, everyone already knows I'm Aspie, for the most part (I'm sure there's new people who don't, but usually that's one of many somethings to pick up when you're new to any board-quirks of the pre-existing regulars ). The reason I might precede something with "I'm Aspie" is just to lay the groundwork for a story where it lead me to do something stupid, or if I'm agreeing with another Aspie on something they've experienced. That's just an expediated thing to me without going on too long about it. When I'm doing my introductions to new people, I'm more specific and explain the situation, but then I expect them to remember it for future reference with a minimal amount of reminder, but a lot of people just don't remember. So I guess maybe I've just gotten into the habit of dropping a little reminder for it rather than wait to see if people do? Something like that.

To another direction, I've given the topic some thought, and in a sense, you could say I AM proud of being Aspie. I think of it as similar to being proud of being, say, blonde...it's a feature you're born with that you particularly enjoy. If I were to delve too much more deeper into the reasoning than that, this post would be pages long.

Also, it's a truth that there are higher concentrations of Aspergers people online than in the "real world". It's just because a lot of them are either nonverbal, or, like me, are just more comfortable not talking. Plus body language and voice tone are completely taken out of the equation, so it's harder to say or do the wrong thing. I mean, if you HAVE to preface your typing with *sarcasm* then it's hard to misread it, right?

I've joked a couple of times that I wished I was nonverbal because sometimes talking is just the most irritating thing there is. One of the happiest days I had in high school was when I had laryngitis and had to communicate with a notepad...I actually faked it for two days more just because it was such a relief not to HAVE to talk. Typing or writing is SO much more comfortable and feels more natural to me.

[CancelMyService]

Also, what's to say some of the people claiming to have social disorders don't actually have a diagnosis? Should Aspies keep a note from their doctors scanned on their PCs so they have proof on the internet?



BTW, for the interest of full disclosure, my mom was told when I was kid that there was a chance I was autistic. I was painfully shy and loved to sit Indian-style and rock back and forth for hours, plus I still have issues to this day with social interaction. I don't go around identifying myself as any type of autistic, but it wouldn't shock me to find out one day that I was.

[Dreamstalker]

I may or may not actually have Aspergers per se (I had some fairly serious brain bleeds in infancy so part of what was first seen as Aspergers may have just been the brain in the last stages of repairing itself), but that diagnosis has gotten me help when I needed it so I'm not bucking the label officially. Yeah, I'm weird and proud of it. Since it's not 100% clear what I have, if anything, I tend to no longer define myself that way.

Mysty, have you ever read a novel by Elizabeth Moon called The Speed of Dark? It's about an autistic group of scientists who--due to the autism--are brilliant in their fields, then along comes a "cure" and anyone who refuses it will be let go.

[Lace Neil Singer]

My interpretation of having AS is like the X-men universe; then again, a lot of people don't get that analogy. ^^

[Pedersen]

Meaning, you can actually have a touch of Asperger's.

Yes, you can have a touch of Asperger's. Just like you can have a touch of a cold. A mild fever. A small infection. A local anaesthetic. Mild OCD. Shall I go on?

Take a look at a roomful of kids who have Autism, or Asperger's, and you will see a whole range of behaviors. In fact, there are those who believe that Aseperger's is just a mild form of Autism.

Some of those behaviors will show kids who are barely any different from normal. Others will be so strongly abnormal that they almost require restraints to be in the same room. And the whole range in between.

So, yeah, you can have a touch of Asperger's. Why would they make a diagnosis where you can have a touch of something? Well, I think you said it best:

I'm complicated, dammit!

Just like all the people who suffer from Asperger's. From Autism. From ...

[Amethyst Hunter]

I only do it because I literally went my whole life without realizing that not everybody in the world behaves the way I do...To me, it's like learning some brand-new language at this point to learn what people actually do. I equate to saying "Hi, I'm Mysty and English is my second language." Because to me, it almost kind of IS...In short, it's just like...people always expect me to know the rules, and until I was 23, I didn't even know there was a game going on, you know?

This is EXACTLY what having ADD felt/feels like for me.

[Dreamstalker]

I was talking with my dad, and he said that some/most of what is seen as "disorders" nowadays may be throwback survival traits. Hunters had to be able to pay attention to everything (ADD) to determine within seconds if something was food or wanted them as food and react accordingly. Hyperfocus (as sometimes seen in AS) was good so as not to be distracted from stalking prey, or when involved in another difficult task. That trait is also useful today for some of the same reasons (such as coding for example).

We still don't exactly know what is considered "normal" as far as brain workings go, so how can we say with certainty what is "abnormal"?

I've brought up with my shrink the concept that I may have had something different than AS that was only mimicking it, and been met with either silence or "has someone been telling you you're retarded?"....um, no, I have valid observations of my own dramatic improvement that lead me to believe there's another explanation. I'm not disputing the diagnosis as it has helped me, I'm just curious as there were physiological factors that had nothing to do with AS at all.

[Sylvia727]

I have bipolar disorder, aka manic-depressive disorder. I can't remember if I've ever mentioned this on CS or not, because it's rarely relevant to the story. But when I'm talking to people in RL, I occasionally have to explain it. Ideally, I drop the label and continue with the story. Sometimes I have to backtrack and explain bipolarism, but usually the conversation continues unhindered. I don't see it as pingeon-holing myself, because it is a convenient label to describe one aspect of my personality. Just like I tell people that I go walking. Not everyone walks the same way, but one gets the general idea of my actions. In the same way, dropping my disorder into the conversation should give my audience the general gist of my behavior at times.

As far as it making me special in some way...well, yes. I've been on all the drugs that could normalize me, and I hated them all. I don't want to be average. I am a unique and beautiful snowflake. But like the t-shirt says, "You're unique. Just like everybody else." Being disordered isn't anything to brag about, but it is who I am. Just like having long hair, or being tall, or being female. They're all parts of my identity, but my personality doesn't have one central factor or characteristic. Everybody is a complex sum of parts; identifying and labeling a single part is like having one piece of a jigsaw.

I've been reading Mysty's posts since I joined CS in November, and this is the first time I've heard about her Asperger's. If I go back and reread her threads, will the meaning change for me? Not significantly, no. Examples of social awkwardness (or any other Asperger's symptom, please excuse my ignorance) haven't even consciously registered with me. I've filed them with my mental picture of Mysty and gone on. Knowing that she's an Aspie just filled in some of my mental jigsaw, but I don't base her entire identity on that and neither should anyone else.

Now, attention whores piss me off. They're playing the disability card like playing the race card or the gender card. What if I started walking with a cane, like Seshat does, so that people would open doors for me? I would be a festering boil on the ass of humanity, that's what. Furthermore, anyone who realized I was faking would be just a little bit more jaded and a little less likely to help someone with a geniune disability. And that's all entitlement whores are doing. By saying that they have a disorder that affects social skills, whether they do or not, they obtain permission to act like douchenozzles. Anyone who witnesses this behavior will then be less sympathetic to someone who's just looking for understanding, because they will believe that X Disorder equals douchiness.

I have to deal with the aftermath of attention whores every time someone says or implies "You're not really bipolar/Manic-depressive isn't a real disorder, you just want to be trendy." And yes, people have said this to my face. They think X Disorder is New Age psychobabble because they have no reason to believe differently. I have the option of saying "Fuck you" and walking away because bipolarism is way down on the list of things that will fuck up your life, but many don't. Everytime a teacher punishes an ADD kid for bouncing in his seat, or a kid with an anxiety disorder for running out of the classroom, I see red. It's an uphill battle.

[Seshat]

Now, attention whores piss me off. They're playing the disability card like playing the race card or the gender card. What if I started walking with a cane, like Seshat does, so that people would open doors for me? I would be a festering boil on the ass of humanity, that's what. Furthermore, anyone who realized I was faking would be just a little bit more jaded and a little less likely to help someone with a geniune disability.

Yes - EXACTLY! And thank you for putting it so clearly. It's really irritating when things that disabled people need get denied because of too many fakes. One that really upsets me is the misuse of service dogs - but then, that's probably because of my blind friend.

She's got the advantage that she can just take her sunglasses off to prove that she's blind: one eye simply isn't there, and the other has a cornea so clouded noone can tell what her iris colour is. As soon as a doubter sees that, they'll accept her golden retriever with 'Seeing Eye Dogs Australia' embossed on the harness. (Not that most people doubt such a stereotypical service dog.)

I'm invisibly disabled, however: if I don't have one of my mobility aids, I don't look disabled. If I foolishly go out without them (because I'm having a good day and 'oh, I don't need it today'), then when I end up struggling to walk and clearly limping, I get people looking at me with that 'you're just trying to get attention' expression. I HATE that expression.

Um. I've forgotten where I was going with this. I guess mostly I just wish noone ever tried to be 'special' with disability, and that people would trust that people with mobility aids (or who are limping along) really needed them. And the two kind of have to happen together, I guess.

Edit to add: include all forms of disability in the last paragraph, please. Not just mobility disabilities.

[Lace Neil Singer]

*shrugs* Like I said before, I have had to mention my AS to people who's sites I help mod, mostly cuz it helps them to understand me. I don't see it as an excuse for being a bitch, just an explanation. And I do try not to be one, honest.

[protege]

People who play the "mental problem" card just piss me off. Some of you know that I've had to deal with depression most of my life. Some of it comes from growing up in a dysfunctional family, some comes from not really "fitting in" anywhere. I was on some of the drugs for it...but, really didn't like the nasty side effects. I grew tired of being fine one minute, and wanting to strangle someone the next. Contrary to what the commercials claim, there's no cure for it. Sure, you can sometimes control some of the effects, but it never truly goes away.

For years, I had to deal with it alone. My parents, and most teachers, just assumed I was an idiot...until my junior year of high school. That's when I finally got help. I'd always felt there was something wrong, but didn't know what...and usually felt alone because of it. Even now, I sometimes have a hard time dealing with people, and my relationships usually suffer.

However, after dealing with it for many years...most people are surprised if I mention it, even friends I've known for years. Why? Well, I don't let it determine who I am. In fact, I think it makes me stronger; yes, I *do* have something to prove. In other words, lead, follow, or get the hell out of my way. Difficulty? Bring it on!

[BlaqueKatt]

Where does personality end and "disorder" begin? For example, there's an Asperger's "spectrum". Meaning, you can actually have a touch of Asperger's.

At this point, I believe the diagnosis has lost all meaning.

Going to have to disagree with you there.

Autisum/Asperger's is Officially diagnosed via DSM-IV, you have to have at least 6 of the 12 symptoms-which are split into 3 catagories-you need at least one in the first, two in the second, and one in the third.

My son has Autism, after they diagnosed him they checked myself and his father-extensive interviews with both us and our parents(some of the symptoms HAVE to be present before age 3)-they diagnosed me-my husband divorced me(because my genetics were "faulty" and I "damaged" our son) and the courts gave him custody, because "I wasn't fit to raise a child"

The "trendiness" comes from those who don't understand what it actually is, and think it will excuse them for certain behaviors/actions. But someone who truly is Autistic-will generally never have a clue that anyone is any different than them, it just doesn't occur to them. And there are complications that go along with the disorder. I'm great at math, but I have to be reminded to eat, sleep, and shower(I sleep around 4 hours a night, as does my son) or I'll go days without doing any of those. Loud noises cause physical pain, touching causes pain, my immune system is hosed. If I get frustrated I'll go into a blind rage that I have no memory of-the person I am is gone-replaced by(in my husband's words)-"a destructive banshee, hell-bent on terrorizing the planet"-he has had to physically restrain me while I screamed, flailed, and tired to get away-he figured out the rocking trick while watching me with my son in an episode like that-we turn almost feral.

you want to say that's my "personality"?
it's not-it's something I wish would've been found out sooner so I could've learned how to cope better-my son's getting taught what he needs to cope-but it's too late to try behavior modification on me-it won't work, and there's no one willing to try. So every couple months my husband has to deal with me in a state that terrifies him(he's afraid of hurting me while restraining me), and hope that it doesn't happen when he's not around.

The only people in real life that know my diagnosis, are my family, my husband's family, and a few co-workers I trust to do what's necessary if I have an episode. I don't flaunt my diagnosis, as I really don't care, but it angers me when anyone "self-diagnoses" anything-"would you self-diagnose epilepsy-no, so why are psychological disorders so popular to self-diagnose?


Sorry if I seem snarky-but for those of us that do have it-it can have devastating effects, and those that take a 10 question survey and "diagnose" themselves and go around telling everyone they have it, are seriously hurting those of us who do-the quoted comment at the beginning of this post is evidence of that. At my last job everyone called me "rain man" when someone found out(it was in my personnel file, so they knew there were things that might happen), and I've had people ask why my son holds his toys funny in all my pictures of him, I say he has Autism and get told "oh my friend has that-it's not like that, he obviously has something else"-when usually their "friend" is a survey taker and is using it as an excuse.


And Ree-look at it like you would an epileptic-it's a medical condition, and there are certian risk factors involved with it(if they actually do have it), those that actually have it(epilepsy or Autism) generally DON'T talk about it, and it's not something that should be misdiagnosed, or taken lightly.

As one of my friends once said:
"Those who speak don't know, and those who know don't speak."

I only spoke out here to correct a few misconceptions, mainly the diagnostic process-it usually takes ruling out everything else-a good psychiatrist does not make diagnoses quickly(took 2 months for my son, and about 3 for mine).