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corvuscorax
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15 Sep 2012, 4:42 pm

So I'm thinking about starting a bit of an advocacy group, at first on facebook, but I'd like to extend it further if I can get enough of a following.

Ever since my diagnosis back a few months ago, I've grown increasingly irritated with the way that society treats AS and ASD and related disorders. Actually, most disorders in general fall into this group, but it seems to be most prominent with ASDs since they have this blight of "not being curable". But it really bothers me, why is something like this considered a disorder? Isn't it more part of human individuality?

As I said in another topic, it really annoys me when I hear parents talk about their autistic kids 99% of the time. Usually, older parents are better about this, but the parents of the current generation really make me angry when they talk about how they "worry about how their kid will never connect with them" or "when they'll be able to speak". I was a late speaker but that didn't prevent me from being highly intelligent and succeeding! And I connected a lot better than my NT twin sister with my parents; she doesn't even communicate with them anymore while I've had a fairly decent relationship with them. Of course, these parents don't even consider that and never wonder if their NT children will "connect with them". But who cares? Life is life, if they hate you, they hate you. Neither Autism or anything else can predict something like that.

Why is it acceptable to put a stupid sticker on the back of your car bragging about your autistic kid? It irritates the hell out of me that the parents act like they're the victims here. They're not the one with "the plague of autism" here. It's almost like these petty parents are seeking attention. It really disgusts me. And I'm fairly certain while a parent may want to inject their kid with some "super drug" that "cures autism", I know damn well I wouldn't, and I'm pretty sure they wouldn't either!

The final straw was when I had to inform my manager at work about the diagnosis, and he informed me that "Oh, I know how to deal with people with Asperger's/Autism, I have a cousin with it, I know how to deal with it." Deal with it, deal with it. This is NOT a term I like. That associates the relationship with a liability. In addition, you don't just say, "well I've dealt with one autistic person, I can deal with all of them!". That's like saying you met one black person, and thus you know what all black people are like.

I think a lot of the problem here is that the parents are injected with fear with groups like Autism Speaks and things like that. I don't think the group as a whole is bad (although I'm not a fan of it myself - they need to work on not scaring people by accident!), but people are rarely educated well into how things work. Even in the 4 months of research I did leading to my diagnosis I was terrified of the prospect itself, but why? I'll tell you why - the stigma associated with autism is ridiculously negative, and is most certainly overblown. Yes, it can be crippling, but in most cases its not, and the problems associated with it cause difficulty but perhaps that is a difficulty caused by society's urge to strive for mediocrity as opposed to a full hinderance - society simply can't deal with a cog that doesn't fit in exactly the right way, and thus they're literally throwing people out.

So here is my premise.

Respect me.

Why respect me?

Because the biggest problem with autism's stigma is that people DON'T have respect for people with ASDs; instead they see it like AIDS or something, as a horrible incurable disease that will destroy someone's life. WRONG. It's when people show no respect for individuals and tease or segregate against them when autism becomes an issue - just like how being black is an "issue", because some people are racist. Neither one is an "issue" (at least in autism's more mild forms) unless someone wants to make it one.

Most people who are diagnosed with autism or Asperger's are individuals who are mostly capable - they don't have it as severe as some others. I can't speak for those who have it much worse than I do, but at least in my case I like who I am. Sure, I hate people and new people scare me a lot, and I hate spending time with people most of the time, but I don't feel that would be changed. I need a bit of help with some minor things, but for the most part I feel fine. I think most of you would agree, with different levels of severity, that despite your flaws, there's certainly nothing that you would want to change as far as to change your neurological makeup - changing who you are as a person.

CUE THE somewhat lame ACRONYM

R stands for Researching, NOT CURING. If we research Autism, then we can understand it better and perhaps come up with better ways for people to understand eachother. We don't need a cure for human individuality.
E stands for Education. Education of Autism to show parents and other people that it isn't this plague, but rather just a unique individual. To teach parents and people what Autism really is, not to paint it with a scary face to get money.
S stands for Safe. People should feel safe expressing themselves as people and trying to explain to people that they have trouble with some things; maybe the other person might have trouble with some things themselves! We should all as people feel safe to express ourselves.
P stands for Protect. We need to protect the minds of both autistics and others from things like people who want to put us down, society's negative stigma and even things like a possible cure and early detection (which may lead to abortions because of the diagnosis). A group of people are only as strong as they are willing to protect themselves and their cause!
E stands for Equality. Some people may have more trouble with things than others, and some people may have way more problems than others. But we're all still people, and we need to treat people as such. Even if you don't get that NT or Aspie, you need to realize that we're all still people and we all still have a fundemental equality.
C stands for Cooperate. NTs and Aspies should all learn to cooperate with eachother. It's the only way we'll learn to understand eachother, if we understand that we're different. We have our weaknesses and our talents, we should use our differences to counter our weaknesses and exploit our talents to the fullest!
T stands for Tolerate. This is the key to everything else. We need to tolerate people for their differences! Can you imagine a world where everyone is the same? It'd be awful, with nothing new or interesting ideas to shake things up. Autism exists because humans are individuals, not because it's a monster that has to be cured. We can't just view one as a problem and try to fix them just because they're different! Tolerance is key!

In short, we have to respect eachother as individuals! We can't just say, "well I know how to deal with an autistic because I dealt with an autistic before". For me, it's easy to approach someone as an individual (although actually physically approaching that person is difficult!)... but it seems for a lot of people, they want to make a generalization based on what some doctor said, or what they saw on Rainman or something. Society needs to wake up. Respect ME as an individual, don't just read the label and throw me in with the rest!

This is NOT an anti-Autism-Speaks group. It's a group aimed at spearheading the misinformation and stigma, and teaching people to see people as individuals, autism or not or whatever.

So... what do you guys think? Do you think I need to reform some things?


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unduki
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15 Sep 2012, 5:07 pm

I can tell you've put a lot of thought into this. You have a lot of legitimate gripes but your proposal kinda comes off more like a rant.

I feel compelled to defend young parents of autistic children. You don't have much compassion for them and you seem to want to dictate how they should behave - as if there could be only one set of rules with autism. Being a new parent is hard enough but to have a kid that has this difference that a lot of people would call freak, is a hard pill to swallow, but swallow it they must. Kids on the spectrum are so different and some require much more attention than others. NT parents really have to adjust everything to accommodate their beloved child - and maybe they don't get as much sleep as other parents.

Society teaches us to desire certain things. Every parent wants the best for their child. Starting out with a child who will surely be shunned by it's peers is heartbreaking to NT's. For many, first words are never uttered. They have to deal with other NTs staring, commenting, misunderstanding... and yes, all parents want to connect with their children and usually do, especially when the child is under five. The parents of autists usually don't get this pleasure. I just think you need to cut them some slack and accept that most of them are doing their absolute best in a fairly crappy situation. But, isn't it getting better? More people are aware of autism than ever before. Tomorrow there will be more.

But, do we really need another advocacy group? Autism Speaks isn't the only group out there.


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corvuscorax
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15 Sep 2012, 5:47 pm

Yeah, I see your point.

I don't see a lot of groups that just promote people like people, I think that might be my jiff; most of these groups seem to be about research as opposed to the "treat people like people" perspective I'm trying, but yea.

I don't hate most parents with autistic kids, not at all, but I noticed that a lot more ones at least in the last 5 years seem to act more like "I can't connect with my kid" or whatever; why would this be a concern when it's not a concern otherwise? I think a big problem with this thing is that people don't educate them on what this stuff really means; I haven't really seen many people my age with autism who don't feel anything towards their parents; if anything they seem to trust them more than anyone else. I know I certainly don't hate my parents.

The thing is, my parents didn't do anything special for me and didn't have to make adjustments for me, and while I know I can't speak for everyone, there's a lot of people out there like me but with parents that are doing too much and aren't just looking at their kid as just a unique individual, and that annoys me. I did things that ticked them off but they never felt for one moment that "I'd never connect with them", and I think that's a bad stigma that's been passed down through society. I had difficulties and I had difficulties dealing with them because my parents never acknowledged my disorder but that's okay in my opinion because while they did cause me frustration with some things, they did a lot for me and actually helped more than a lot of these parents I see "doing too much". People just gotta realize that while parenting is a big job, you can't just follow every book and every psychologist or whatever, you just gotta realize that people as a whole are individuals.

I wasn't communicating with any sort of real sentence structure until I was about 5 years old, and yes, I know that a lot of people made fun of me when I was little, and it certainly hurt my parents. And of course my parents wanted the best for me. But they respected me, more than a lot of parents I see with my peer group with ASDs, and I think that's what all autistic children need, even though both my parents are NTs. Sure, I frustrated them, but I also charmed them through my unique ways. My parents were given a similar crappy situation as all those other parents, and while I don't agree with the fact that they threw the initial diagnosis under the bed and just tried to shove me in place so to speak, they did do something that a lot of these worrysome parents didn't do and that was that they really just said, "well she's different but that's the way she is".

I guess it's a mentality thing but that mentality still exists and I see it a lot, and it's really quite disturbing to me. Again, I can't speak for everyone out there, but I think that's the point, in that no one can speak for everyone or about everyone as a group.

The parents I have a problem with are those that adorn their car with ribbons and all that and go over and talk about how their kid is such a liability and things like that, and unfortunately it's okay to be like that. There's a line between "I have to do a lot to care about my kid" and "feel bad for me, my kid has autism". I work at chuck e cheese's and do live in an area a little well noted for their "little angel" mentality, so I might just have more exposure to this, but I can say right now that not all parents are like that.

Frankly this is just me being mad, and yes, I did think a lot about it, but I definitely need to iron things out. Do excuse me if I sound a little harsh, I do have pretty strong feelings on the subject but I'm not the best at putting those feelings into words.


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unduki
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16 Sep 2012, 1:02 am

corvuscorax wrote:
Yeah, I see your point.

I don't see a lot of groups that just promote people like people, I think that might be my jiff; most of these groups seem to be about research as opposed to the "treat people like people" perspective I'm trying, but yea.


What about non-specific tolerance groups? Isn't mixing it up the point? Aren't we all, as humans, unique and special? Tolerance is a two-way, five-lane freeway. I would think someone with your passion would have a lot of value to add to that kind of group.

Otherwise, you've personalized your solutions based on an emotional viewpoint. This is disastrous for any organization that doesn't have unlimited funding. But if you're bound and determined, that's cool. I wish you luck. Be sure to research non-profit rules very carefully.


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