Autism Speaks

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Autism Speaks

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Kapkao
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Post: #1

RE: Autism Speaks

Mytelli! Wrote:

Kapkao Wrote:

I'm not interested in dragging ASpeaks here just so Mytelli can have them come to us and Mytelli could then speak 'truth to power'. Lots of better places and ways to do just that, without potentially causing a meltdown. People are going to be distrustful for a while, and will deconstruct and nitpick what soinso has supposedly said. That much is a given.

No offence, but what are you talking about? I've been to both sides of the argumant, I encouraged the interveiw and now I'm looking at it from both angles just like you. That's completly out of wack with what I've said

Don't distort what I've said, just because no one has said anything radical yet.

Throwing in big words with no substance or meaning people might make people think you're clever for a little while, but remember; If you pee in your pants, you will only stay warm for so long.

e: Speaking of which, why doesn't the AFF staff crawl out of that big 'ol rick over there and tell us; What would Autism Speaks have to do to get in their good books?

I don't know what "big words" means to you, but throughout this thread you seem willing to call out... at ASpeaks, to be sure. So does Bloke. Be my guest, ese... I'll root for both of you. Just don't drag them here to do that. It wouldn't be much fun that way.

That's all I'm saying.

wendyl Wrote:

I DO think it's very important that Autistic people are the ones advocating for other Autistic people. I don't know what your life has been like, and frankly, according to your profile, you might not be Autistic at all, although it sounds like you might be Neuro-diverse.

My life has been hard. Really, really, really, hard. And I spend a huge part of my energy each day just trying to understand what people are saying to me. Either I can't understand what people are saying (I work full time) because of other noises- other people speaking, yelling, screaming, moaning, printer noises, monitor noises, you name it (I work in a Hospital ER), or I can't understand what people are saying to me because of how they worded it, or said it. And that's just a small part of it. Autism affects every facet of my life. It is what makes me special, but it also what makes it very difficult for me to do things that others take for granted, and in fact think are simple. Such as, pay bills, balance my bank account, manage my medical appointments, manage my dental appointments. I have been struggling my whole life, simply to survive. I spent more than 40 years not knowing I was Autistic, not understanding why I was such a failure at life. I believed what everyone said about me, that I was just a screw-up.

I don't think someone who is not Autistic can POSSIBLY fathom the kind of pain we have been through, can REALLY understand our needs the same way another Autistic person can. Your comments make me think that perhaps you don't understand what it feels like to be Autistic. There's a hell of a lot more to Autism than stimming, anxiety, depression, irregular habits, and oddness. The fact that you don't get this makes me think that you might not be Autistic. This is from your own profile " Schizoid with some limited Aspie traits; I think I cheated on Marcia's test..." I'm not saying there is any wrong with you posting on this site, I'm just saying that you do not have a complete understanding of what it feels like to be Autistic. I wouldn't want you advocating for me, anymore than I would an NT.

I hate to be the one to break it to ya, Wendy... but you are hardly unique in terms of raw suffering endured while conscious, or for the level of difficulty you have with basic tasks. For that matter -and I fully expect to take flak for this- autism is hardly unique in terms of suffering endured. Sure, your psychological pains feel staggering. So did mine, once. Yes, it was temporary, then I finally bothered myself to research some effective medicinal treatments (all prescribed) to over come my personal shortcomings. I'm still guarded and defensive at times over the night, and I don't think I'll ever stop being that way because I have the heredity and the past environment to support such a trait making it's way into the unconsciousness. When an environmental deficit has reached that point in one's psyche, it stays with them a looooooong time. At that, my paranoia namely shows up on the internet... where I can't see body language nor can I listen to people speak. I can't also discern what might be said behind my back, at times.

Anyhow, I'm sure there are plenty children of misery who would love to exchange their memories of life for yours; to be the "screw up" instead of being crippled by fear, anger, or grief to the point of not even being able to hold a job. I don't mean to discourage you in any other aspect besides this one issue, either. But I would like to discourage someone from thinking they have a unique take on misfortune, or that one group of people or another has a refuge of grief that only they have that can't be understood by others. Autistics are not unique in the sense of how much they are exposed to things they do not want to be exposed to. Yeah, it kinda sucks, too. But it also means there are non-autistic people who can potentially understand just how badly you hurt. Maybe one day... you'll be able understand how much some non-autistics can understand you.

09-22-2011 05:07 PM