Should we be the ones spreading awareness?

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Absolutely not, but *understanding* and being prepared to put the blood sweat and tears into doing the right thing are far from synonymous.



Because, the way human nature works, people are not going to put huge effort into something unless it benefits them. The only people who actually benefit from autistics living a full life ARE autistics. Now that isn't all cynicism. For a few month I have put my own heart and soul into trying to fight discrimination and raise awareness.

IT HAS BEEN HELL. I seem to have had to confront every dirty trick in the book, usually as played by people and organisations who claim to "care" and, in truth, only care about personal gain, whether in money, kudos, status, power or any combination...I can assure you that the Mafia has more integrity and compassion...and that isn't isolated, because I have dealt with a different issue in the past and found myself up against exactly the same patterns of backstabbing, corruption and total lack of scruples.

Once you get into that arena you cannot trust ANYONE. I wouldn't expect anybody to take that on without having something to gain for themselves from it, that is why, ifr we cannot do it for ourselves we should hire a PR company and pay them.


Though certainly one-sided (I have honestly never seen anything to suggest that there is "another side" to social politics) my *claims* are just the blunt truth about the only reality there is.

I honestly wish they were not.

M

That is true, but earlier you claimed otherwise.



Fair enough. There are always going to be people that do things for sheer profit or publicity, and raising awareness for autism is no different. And that gets frustrating because there will always be people, and quite often the popular media, that buy into the quacks instead of the people who are doing things right.





Well, thats a rather unfair and hasty generalization. Just because there are a few people in one grouping that do bad things, doesn't mean that everybody else is bad. If you really want your views to get some respectability, you do your best to avoid conclusions like that. You have to learn to trust other people.

No, I said that, when surveyed, they consistently got it wrong (which they did), but that doesn't mean some of them couldn't understand if they actually TRIED (and maybe asked us, instead of guessing).



And they are usually the most effective publicists, so the trick is to get them to buy into the RIGHT people for once, and I am rather afraid the only things that ever seem to work are money, status and power.




Nope, sadly it is across the board, hard won, experience with no significant exceptions, EVER...in the very beginning I was a wide eyed innocent who trusted almost anyone who said they cared or wanted to help, I learned the hard way, over years, and every time is a devastating personal experience.

Trusting other people, in any kind of politics, including social politics, like Autism Awareness, is the fast track to getting your throat cut...and having just had a refresher course in how bad that can get over the past few days, knowing how much worse it would be if I had been stupid enough to trust anyone, now is NOT a good time to try and sell me on "trust".

All I can say to you, with great sadness, is "go know"...

M

From my brother's experience with hydrocephalus, we need a doctor. His doctors were Fred Epstein and Jeffrey Wisoff and they did alot for pediatric neurosurgery and the families of their patients in terms of annual conferences and stuff that really made the situation bearable and put it into perspective. They made it seem like there was smart talented people looking out for the kids whereas I don't get that feeling from NYU's epilepsy center. The thing I noticed about epilepsy organizations is that the culture or "industry" is not cohesive. All it takes is being able to rely on the continuation of those annual conferencese at NYU to make us feel safe. I don't really understand what Simon Baron Cohen talks about. We need someone here in the States willing to take aspies on as his/her cause and I think it would be better if it was an NT.

I think that going into any big movement while trying to only include a certain group of people is terribly one sided. Not letting NTs join your cause is prejudice. It's like saying "I don't like what you're doing to us, but it's okay if we turn the tables, and do it to you." Yes, autistics should lead the way in such an effort, but they shouldn't exclude the rest of the population while doing so.
Like I said before, I don't know if I have AS or not, but I sure as hell fight for my kids everyday. I DO have personal interest invested. I want them to know that they're equal to everyone else. I raise them to believe it. I want all their teachers to know it. I wouldn't want them separated from NTs in any way. that defies what I'm trying to instill in them.
BTW I see a lot of misconceptions everyday on this forum about "low functioning" ASD. I usually don't say anything. If one were to go off of the assumption that only those who have it can know what it's like, then what business does an Aspie have speaking for someone with classic autism? Is a NT that has dedicated their life working with, and genuinely helping those with severe autism have less weight then someone with AS? I'm probably going to catch a lot of flack for this, but I'm just gonna say it... there seems to be an air on this forum at times that has a tinge of haughtiness concerning AS vs. classic autism. In all truthfulness, that is not what I want people to know about ASD. I want people to hear a message that we are all equal, no matter what functioning level society has deemed suitable for an individual.
I hope that someday my nonverbal son can learn to use a litewriter. I want him to have his own voice. I want him to be able to express what kind of life that HE wants. You bet that I'll be right there helping him to achieve it. It won't matter if I'm NT, or AS.

How is it prejudice when they are speaking for us? I didn't see Oprah include those that could speak for themselves, it was all about sympathy for the parents. When I go to autism speaks dog org, I don't see a place for those that have autism. As far as I know, people in general don't like words put into their mouths and speaking of one-sided, I sure do see alot of one-sidedness going on with this topic regarding people speaking for us in the media and not even bothering to ask someone. I know those with low functioining autism may not be able to speak up but there are those on the spectrum that can and I'm not sure about you guys but I'm sick of the misrepresentation and the prejudism it brings to further make our lives that much more difficult.

This isn't directed at ALL so called normal people either. Just those that continue to speak for us or think that because people think we are different that we cannot express ourselves. If we have to write it out, it may not be the socially correct way but it's still a form of communication correct??

Mechanima, you are spot on.

I think that's a wonderful idea. I'd be willing to submit my stories, knowledge and art to your magazine. I think that if we all submit our stuff, that the world will see the autistic population in a whole new light.

purrs. That means I concur!

Not all autistics are on the severe end of the Spectrum, and I have no trouble speaking for myself. I've graduated from High School, with a 3.7 average. I've held down a job that I've hated, for three years. I was able to overcome a major episode of Depression. I can get around my city, independently. I cook my own meals, clean my own apartment and do my own laundry. I've been living on my own for eleven months, and I budget my own money. I pay my own bills on time. I shower every day, and bathe three times a week. I can walk into a supermarket and buy my own groceries. I know how to make my own appointments over the phone. I have a group of NT friends who accept me, as I am. I can also read and write. I know how to use the Internet, as well.

Can you spread awareness or do people need to wake up themselves and take inventory of their lives and the bigger picture? 9/11 was supposed to be a wake up call and for many people it was. All of a sudden priorities shifted and relationships changed. Superficiality and BS for a good part, dissipated. Still, many are in virtual comas, oblivious to the own workings of their minds and preferring distractions and game playing to actually putting wheel to cog and moving towards some kind of healing stance.

If only 1% more of people would do kind and compassionate acts in the world - critical mass would be positive, awareness and knowledge would trickle down into hearts and minds and heal us all from whatever it is we're burdened with......