WWE, Jenny McCarthy, and Generation Rescue

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englishwolf
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23 Jul 2008, 9:57 am

Generation Rescue have teamed up with WWE and a load of celebrities to try to raise money for their cause of finding a cure for autism.
I'm pretty sure this won't sit very well with a lot of members on this site so i'll just post up some links to the story along with the webpage for generation rescue so that you can read it yourselves and if necessary vent your spleens in this thread.

http://www.wwe.com/shows/snme/exclusive ... tionrescue

http://www.generationrescue.org/

My personal opinion is actually not totally clear to me. Part of me feels these people are working towards a noble goal, part of me feels betrayed by the bovine foecal stance some parents take on their child being on the autistic spectrum where they try to find something to blame and find a non-existant cure instead of facing the truth that there is no cure and that their genetic make-up is partly responsible for their child being on the autistic spectrum.
(Apologies for any lack of coherency in that paragraph.)

Maybe it's a positive thing that Autism and Asperger's syndrome are getting more press coverage with regards to money being raised for research, instead of the spate or recent articles where children at school have been singled out by their teachers and classmates or even expelled because they were misunderstood.

I've never claimed to know everything, and when it comes to Autism and Asperger's syndrome I have barely scratched the surface despite researching it for the last 12 months, but something about this whole generation rescue outfit just feels wrong to me.

I don't know. This world is very confusing at the best of times and all of this just leaves my head pounding. I think i'm going to take a nap.

Edit: If this is a repost then I apologise


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beentheredonethat
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23 Jul 2008, 10:39 am

I've kept largely quiet on this in spite of my lack of respect for Jenny McCarthy (where did she get her training....exposure to a broad group of autistic people....and so on and so forth).

Also, if you look at the front page of the site, you'll see that Alex has posted an interview with a young actress who thinks quite differently.

The thing I found out, quite by accident, is that there are a lot of state legislatures considering special money for autistic research. They have no idea what they want, which leaves the field wide open. So, obviously, there are a lot of people who are trying to get that money, whether they do any good or not. That bothers me.

Second, I have been on the spectrum all my life (and I'm not young) and they didn't have all these neat drugs, and I had a hell of a time in school, and I had no friends until I got to college, and then I had a few friends, because they were as "weird" (which I thought of myself at the time...I no longer think so) as I was.

My main question comes down to this: What's to cure? Autism is not a disease. Asperger's is not a disease. There are people on this board (and I mention no names) who say very little, don't look you in the eye, and keep to themselves......until you get to know them. Then they're of above average intellect, funny, thoughtful, extremely creative, outstanding people. I don't call that something to be cured! Some of us are just average....and that's fine, because we're a pretty big chunk of the American population, and who knows (I'm sure I'm going to hear it from our English, Canadian, Australian and New Zealand members, as well as some of our members in the nordic countries) what the extent of the spectrum is outside the USA. (No, I didn't forget Asia, the sentence was just getting a little too long).

But some of us are not average. Some of us are brilliant and creative (and anyone who knows me personally knows some of the people I have in mind). And that's a part of the whole package.

If someone came to me tomorrow and said "I can cure your AS, I'd say "get the hell away from me. You start fooling around with my brain and you might damage the fact that I can write, and think creatively, and do things with my mind that a lot NTs can't do, and you'd wreck who I am.

We know (I mean medical science) very little about the brain (given all that it does). We know even less about creativity (artistic, mathematical, and so on). And throwing money at it, and getting well known pretty girls to talk about it isn't going to help. It's just going to waste a lot of money.

If you read the papers, you get the impression that the NTs are gearing up to "attack" maybe that's too strong a word, and maybe they've been doing it for years, I'm going to stay out of that one, us. There are a lot of NTs out there boys, girls, men, women who have AS boyfriends, girl friends, husbands and wives. And families. So it's not the NT's that are "after" us....or not most of them, anyway.

This world, I'm sorry to say, is based on conformity. If you don't conform to what a certain group of people think, well, you're weird, and that's bull s**t. And a lot of the NT's 19million of them as a matter of fact, "stuff it" and take the world at large, and they're so stressed out they're unable to function.

If we (in the USA) are a nation who want to "fix" what is "broken," first, we'd better get a pretty good definition of broken (we don't have one) and then we'd better think about what we mean by "fix."

There is no "cure" for Autism. First, because it's not a disease, and second, because no one with any experience has really looked at what it is. And I've read most of the literature on it that's out there right now, and I disagree with all of it. Who am I? Well, I'm just the same as Jenny and her group. I'm a human being with no particular divine insight into the brain, or Autism.

All I can say, is that in my humble opinion, they're going about it WRONG.

My two cents.

Beentheredonethat



beentheredonethat
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23 Jul 2008, 10:51 am

I also notice that they have no place for public comments.

I just love it when "well intentioned" people get into things they know nothing about. They know very little about research, have only listed Jenny M, not the researchers who are doing the work, or to whom they have submitted RFPs, and when their kids start dying of some of the diseases that the vaccines prevent (and I don't, in my most angry moments wish that on them) then maybe they'll start to listen. And maybe the people they'll have to listen to won't be pretty girls. Maybe they'll be bald old men like Jonas Salk, or gray haired tired looking women who have been doing biological research for years, but often times, those are the people who have that information. A group of people like this has already killed a couple of kids with radical therapy. Are they going to wait until they've killed enough children to make the news, or when we have scarlet fever, polio, whooping cough, and a few others that were around when I grew up back before they start to think?

Probably.

How sad.

Btdt



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23 Jul 2008, 10:58 am

They said the path to hell is paved with good intentions. Well, I wish this money would go on making autistic people's lives easier rather than on their extermination. oh boy.


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Judith
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28 Jul 2008, 9:37 pm

I can answer one of the confusing points for you. Jenny McCarthy is listed as a major person in all this because her son was diagnosed as autistic, and a special diet supposedly "cured" him of it. I have my doubts.

My AS husband and I have a daughter who shows no signs of AS so far. His son by his ex is AS. My stepson is a wonderful kid just as he is, and we all have great hopes for his future. My daughter is only 4, so the personality and such are still developing. Neither my husband's ex nor I have avoided any vaccines for our children or made any attempts to prevent what might be a natural development for them. They will be who they will be. AS may or may not be part of that picture. We all have peculiarities of personality to deal with. I'd prefer my daughter be AS than be a crowd follower any day. "Cure" my husband? No. That would change what makes him who he is. I'd prefer he learn some coping techniques for the areas that cause him problems, but let's keep the good parts of AS. We'll take the frustrations to have the benefits.

After all, he puts up with my bipolar disorder, and it can't be "cured" either...

Judith