Hey lookie an autism rant.

[kippurbird]

So, the curse of the roommate continues. This time I got someone who seemed to be genuinely interested and I met and she was nice. She turned out to be the sister of some one I went to undergrad with. I really liked her brother, so I was thinking this is all very cool. She sent back an email saying that she wanted to get to know me better and a couple of questions about the apartment arrangements. Then she asked, about talking to some of my doctors about my diagnose and what have you. We sent back saying that well, if she wanted to know those sort of things, she should talk to me. Her reply was, if I can't talk to the doctors, I don't want to do it.

This seems to be a popular theme. And I'm not talking about my curse, but instead the fact that once you have a label, all rights of privacy are apparently vacated. At least that's the way it seems to the non-labeled people out there. For years now, since I was diagnosed with autism/aspergers/what have you, people have been wanting to know things about me that no one would dare ask if I didn't have a label. Some of these things would break the doctor/patient confidentiality agreement and other things were just private.

One time my mom was asked to speak about problems my brother and I had. My mom refused because we were nearly adults and it wasn't her place to talk about our problems and things that we found difficult. The person who asked her to speak was flabbergasted that my mom wouldn't want to speak about such things, the idea that we might want to keep them private completely foreign to her. Why? Because we were autistic. Which make us, apparently, less than human.

This is a true fact. I don't know about other people with labels or disabilities; I imagine it must be the same, but autistic people are constantly treated as sub-human, once the diagnose is discovered. It's as if a switch is turned on in the non autistic person's head that says "Oh this person is disabled, I must treat them differently. And since they're disabled, they're less than me". We become like animals that need to be studied. That need to be treated differently.

While, yes, we may have different needs than a non-autistic person, we still should have the same rights as them. A right to privacy and happiness. A right to live a fulfilling life, to have a job and sustain ourselves. A right to an education. A right to learn how to maneuverer within society. It may take longer, or with different methods than non-autistic people, but we still should be allowed to learn these things and have these things.

One of the things that my mother instilled in me and my brother, is that we should have goals and we should try to do things. We may not always succeeded at them, but at least we tried. A lot of other parents seem to be afraid to let their children try anything because they might fail or because they're autistic so they might not want to do anything. They just pat their children on the head and say things like, "Oh it's okay, you're autistic, you don't have to do anything. You can't learn anything, I'm just going to allow you to wallow in your world as you are and not help you grow." Stagnating is not something that my mother allowed us to do. She constantly pushes me and my brother to grow and to learn and to do things. Sometimes, she says, that it might have been easier if she had just let us be, but I always tell her that yes, my life maybe difficult, but I'm happy and more independent than I would ever have been if she had just let me be.

I guess, what I'm trying to say, in a very long and ramblingly way is that even though we have different needs, we should still be treated like human beings.

Comments

[rurounitriv.livejournal.com]

Ouch. That was seriously insensitive of ex-potential roommate. I don't blame you for being pissed. If someone wanted to talk to my doctor about me, I'd be shoving her out the door before she had a chance to blink.

[kippurbird.livejournal.com]

Yes. But, of course, since I'm autistic, I'm not allowed to have privacy. Blah blah blah. It is a shame though, she seem so nice.

[jacedraccus.livejournal.com]

So nice and stupid, yes. Bad combination.

*Cracks knuckles*

[anarchicq.livejournal.com]

Ok. I've asked you questions in IM, rather personal ones. I would never dream of asking your dr. or your mother. (unless it was something like "What were some of the challenges in raising an autistic child?").

Now- time for my personal philosophy.

I understand that not everyone who's disabled wants to be a walking explanatory pamphlet for their disability, and that's fine. However, ignorance will not go away without education.

I have a prosthetic leg. I have since I was 14 months old. It's a part of me.

And I HATE it when parents tell their kids not to stare.

I am the one in capri pants and with electrical tape round the calf and dolphins on the socket. DO YOU REALLY THINK I DON'T WANT PEOPLE TO LOOK?! DO YOU REALLY THINK I AM EMBARRASSED OR ASHAMED?!

I believe that, because I don't know about autism or transgenderism or Insert Difference Here, that I have a right to ask any questions I want, no matter how embarrassing, as long as I am respectful.

And the person answering has every right not to answer, if it's too touchy or embarrassing.

Asking is better then silently staring.

I subscribe to this philosophy because I want people to ask me questions because otherwise they will never be educated.

I don't care if kids scowl and ask "what happened to your leg?" in that disgusted, whiny kid voice, because they are kids and I am weird to them. But I have heard stories of because of my telling them what happened, they just understand that much more and will say "I met this one girl..." and it's a good thing.

So people- ASK. Learn! Don't be afraid. We're just people.

Re: *Cracks knuckles*

[kippurbird.livejournal.com]

I agree. And I would have had absolutely NO problems if she wanted to talk to me about my disability and the challenges I would face. But asking to talk to my doctors was way over the line. It's not her place to talk to them.

Re: *Cracks knuckles*

[anarchicq.livejournal.com]

Agreed. I've never even considered talking to someone else's DOCTOR. If someone asked me to talk to my doctor I'd sputter and go "WTF?!? NO!"

Re: *Cracks knuckles*

[authoressarktos.livejournal.com]

Speaking as one who only has dyslexia and glasses, I can honestly say it's because I'd be too afraid of hurting the other person's feelings. ^_^' I hate people who seem to think 'Oh, they're different! Let's ask them embarassing questions!', but then I have no social skills to speak of and 'foot-in-mouth' disease, so normally I go with the 'don't look, don't ask' policy with everybody- and I mean EVERYBODY.

Re: *Cracks knuckles*

[anarchicq.livejournal.com]

*Aloof voice*
"Fine, fine, don't ask. No, really. it's ok. Remain an uneducated Plebian. It's ok. *long suffering sigh* I guess I'll just remain smarter than you, keeping the status quo stable. Let's not rock the boat. Ignorrance is bliss after all. Ta!"

*grin!*

Re: *Cracks knuckles*

[christinaathena.livejournal.com]

Yeah, that makes sense. But thinking that the person who actually IS autistic can't tell you anything about it? The heck?

There's good practical reasons to ask a potential roommate about mental health things. You'd want to know how life would be like living with them, as well as (if you're polite) what kinds of problems your habits might have. Like, I know I'd drive someone with a cleanliness OCD up the walls. :-)

Re: *Cracks knuckles*

[anarchicq.livejournal.com]

Serious.
I actually asked a friend of mine who is prone to seizures "What do I do if you seizure at a Con or something?"

One needs to know this kind of shit. And if the person who has said shit can't talk about then they have issues and you don't want to live with that person anyway...

people are stupid and my boyfriend gives you icon love.

[reverie-shadow.livejournal.com]

Honestly, when you mentioned that you were autistic, I was rather surprised. But I guess that goes with the way you were raised. Most parents would just go, "O woe is us, our child is autistic and will never get anywhere in life!" These people need to be shot.

If anyone asked me if they could talk to my doctor for some medical reason, then no. If that person can't believe you enough to trust your word for it, than I suppose it's best that she not room with you. Nice or not. You have a right to your own privacy. Fuck the rest who think otherwise.

I'm amazed (and not in a good way) at how people seem to judge others with autism. Then again, I was raised in a way that people are people, not to label them as, well, anything.

[kippurbird.livejournal.com]

Most parents would just go, "O woe is us, our child is autistic and will never get anywhere in life!" These people need to be shot.

That is the majority of parents out there today, and yes, they do need to be shot.

If anyone asked me if they could talk to my doctor for some medical reason, then no. If that person can't believe you enough to trust your word for it, than I suppose it's best that she not room with you. Nice or not. You have a right to your own privacy. Fuck the rest who think otherwise.

Yeah. I'm just upset that it didn't work out. Again.

[berseker.livejournal.com]

Ouch.

Ok, that was very rude of her. I guess she probably thought she would have to take care of you, or something...

And anyway that´s no excuse. It was rude and period. u.u

[kippurbird.livejournal.com]

Well, part of the thing about being my roommate is that they will have to be sort of staff like person for me. They get a fifty percent discount on the rent for that. But still, asking to talk to my doctors was out of line.

[christinaathena.livejournal.com]

What do you mean by "staff-like person"?

[kippurbird.livejournal.com]

Someone to help me with things when I have autistic problems with something. So I don't have to rely on my mother for everything.

[christinaathena.livejournal.com]

Ah, I see.

[emily-goddess.livejournal.com]

In that case, I can almost understand why she'd want to talk to your doctor before taking on that responsibility (which doesn't make it OK by any means). I say "almost" because she could have gotten that information from you and your mom - asking to speak to your doctor is both a gross violation of your privacy (and legal confidentiality), and a pretty clear statement that she thinks you're too disabled to speak for yourself. And this after she'd actually met you and talked to you - some people just can't see past the label to the person underneath.

[pandoras-closet.livejournal.com]

I just don't care enough to ask questions.

But look at it this way; You wouldn't have gotten along with her in the long run anyway.

[kippurbird.livejournal.com]

*could say something extremely rude and snarky, but won't*

And yes, you may be right.

[pandoras-closet.livejournal.com]

What I mean is; Okay, you have Autisim. So? We can have a conversation, and we more or less understand each other.

As far as I'm concerned, that's all that matters.

Bear in mind, I regard gays, lesbians, and other races with pretty much the same lack of caring.

[kippurbird.livejournal.com]

Ah! Well that's different. That's not lack of caring that's being non-judgmental.

[pandoras-closet.livejournal.com]

I prefer to think of it as that I don't care enough to be judgemental.

[ghostgecko.livejournal.com]

And that, my dear, is why I don't tell anyone. Even though I could get cut some slack at work, it's not worth it. It's bad enough where I go to for therapy most of the folks are pretty badly disabled, and I've had staff members talk to me like I'm a four year old.

[kippurbird.livejournal.com]

We kinda have to disclose it because they're going to be staff like person for me.

[sonic-sues.livejournal.com]

Ow, what a bitch. I have depression and a lot of people think that that means that I'm a psychopath who's going to pull out a machine gun at any minute and start gunning people down.

[kippurbird.livejournal.com]

You know, I've never thought that about depressed people.

[papier.livejournal.com]

Yeah, the exact opposite comes to mind for me.

[jacedraccus.livejournal.com]

I've thought about it, and I think the people who do that are not really depressed, at least not medically. I think they're just hooked on the drama of being misunderstood, they work themselves up, they convince themselves...

In some cases, at least, anyways.

[jacedraccus.livejournal.com]

Speaking as someone who is, medically speaking, completely normal... being left to be yourself is alright, but I do feel I'm missing something, you know? Drive, ambition... I'm content, but I don't know if there's something more I should go for. And if there is, I have no idea what it should be or what I want.

So good on your mother for pushing you like that.

That being said... not even the police are allowed to talk to your doctor. Who does this idiot think she is?

Such an awesome rant

[oceans-heart.livejournal.com]

My boyfriend has a nasty nerve condition that besides destroying his body is also messing up his mind some. Nothing to the point that he can't mentally function, but it's enough that sometimes I do have to catch myself and remind myself that he is not a child and I need to treat him as an adult. It pisses him off to no end, but he's remarkably patient with me when I do. We're still learning to feel each other out as far as those kinds of things go. He's learning where his limits are as far asking for help and I'm learning when he needs help and when to stop being overprotective so that he can do his own thing. I don't understand why someone would need to talk to your doctor though. As crappy as this may sound, if you haven't been placed into some kind of a state run home, then its pretty obvious to me to that you are capable of running your life

[papier.livejournal.com]

Dude, that's horrible. :( I'm a strong believer in privacy. I'd ask 'what do you need me to do to help you out?' and that'd be it. If someone wants to talk to me about something in their life, that's entirely up to them.
I live in an area where a lot of kids come from broken homes, so you grow up learning not to ask people about their family life, so the idea of asking to see someone else's Doctor is just...baffling, especially as it's pretty much illegal in most countries.
I was reading a comment above about how it's better to ask questions than stare. I remember once when I was on the bus, there was a guy in a wheelchair not too far off from me. It's normal to see people in wheelchairs on the bus so I wouldn't have noticed him if it hadn't been for his T-shirt: 'Keep staring and I might do a trick.' Gave me a laugh. :)

[dryaunda.livejournal.com]

In Teh Internets, claiming Aspergers can be considered an excuse for rudeness. I think it's even been used as a slur regarding transhumanists (along with "white", "male", "American", and "yuppie").

Lacking the desire to socialize and all the nitpicky just-so social skills has taken on an entirely new dimension.

[dryaunda.livejournal.com]

An Asperger's thread you may be interested in.