I was debating with Autism speaks. Is autism really that bad

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anbuend
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31 Mar 2008, 3:13 pm

I don't believe there's no way he could have volunteered with autistic children and not seen any who went naked and threw things around. There are easily over a dozen autistic children in the world who do not do that, and it's clearly that he was referring to.

However, I think it's pretty arrogant for any person, autistic or not, to say "I have worked with over a dozen autistic children and therefore I know what all autistic people will and won't look like and will and won't act like."

There are way over a dozen ways that autistic children, or for that matter adults, can behave. And I don't mean two dozen, I mean at least hundreds of variations on autistic behavior exist depending on how exact you want to get.

And working with over a dozen people doesn't turn you into an expert on all those different ways we can look, behave, think, etc.

I get so fed up with people who think that "working with autistic children" (which by the way I've technically done, and which can mean nearly anything) means they know everything there is to know about autism and autistic people and can make pronouncements right and left about what we are like and are not like.

I've heard people say that I don't move like whatever number of autistic people they've seen, therefore I'm not autistic, or something. Thing is, I do move like a fair of autistic people I know, some so much like them that we can mutually read each other's body language without even trying. These people just don't know that, because they haven't known the amount of autistic people necessary to start really looking for patterns in our behavior and seeing who does and doesn't move like who else.

A little knowledge is a dangerous thing, especially combined with a lot of arrogance.

And it's bad no matter who you direct your arrogance at. It doesn't matter whose "side" you're on, or if you're on a side at all. Once you start throwing around that you've "worked with autistic people" and therefore know what real autistic people are and are not like, in some kind of total absolute way like that, you're essentially throwing status symbols around but not proclaiming any actual knowledge. It might impress people "on your side" (if there are sides) as meaning something, but other people, especially people with enough actual knowledge about autism, will just see you as arrogant and disrespectful.

For the record, I didn't strip naked and then throw things, but I did have to be taught not to take all my clothes off around people, and I do still have trouble remembering that rule.

Another two people I know, know that rule, but have trouble implementing it even when they remember it. Their autopilot routine when it comes to clothing is to take it all off even if they are just trying to adjust one part of it, and that gets in the way.

I know many parents who describe their children as "little nudists", and I know many autistic adults who, like me, were "little nudists".

This might be because I've actually known and read about enough autistic people and parents to get a sense of how wide our behavior ranges far beyond a little over a dozen ways we can behave. And because of that, I know not to say just about anything is something "an autistic person would never do" or "an autistic person would never look like", no matter if I've ever heard of it before or not, because I've learned that even after hundreds of people (known offline, online, through books, through their parents, etc.) there's always something new I haven't heard of or wouldn't have expected, when the next person shows up.

Agreed completely with NewportBeachDude and littlebopeep on this one. I don't read that board, but I really don't like the idea that people there could be forming the idea in their heads that all autistic people are that unaware of the range of what autism can look like, it only confirms stereotypes that we only hold the views we do (whatever those are) because we don't know how bad, or weird, or difficult, it can be. And I don't think that just because the board is run by an organization I don't like, suddenly means most of the people who frequent it, who are just ordinary parents, deserve that degree of disrespect. The autistic community isn't some kind of game where you have to score points for your team all the time or something.


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"In my world it's a place of patterns and feel. In my world it's a haven for what is real. It's my world, nobody can steal it, but people like me, we live in the shadows." -Donna Williams


Last edited by anbuend on 31 Mar 2008, 3:22 pm, edited 1 time in total.

Bopkasen
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31 Mar 2008, 3:21 pm

NewportBeachDude wrote:
Chimchar wrote:
littlebopeep wrote:
Chimchar, how can you demand respect from parents when you post this in the AutismSpeaks thread about Autism: The Musical?

"come now I find this very pathetic. It's so fake. How do we know these kids aren't NT children pretending to be autistic? This is all just acting."

Do you even see that? A kid running around butt-naked and throwing stuff around is something I would not call autistic.

This is ACTING!! !! !"


You are not only being rude over there (which begets rude responses. I'm actually surprised how many parents are making efforts to be nice to you) but you seem to have a very limited view of how autism presents in children. The documentary shows the background lives of autistic kids involved in a theater program and you can't believe that they are on the Spectrum. That shows how very little you know about the variety in autism. Which is fine, but please accept your unfamiliarity and don't go over to a parent message board, picking fights from a very uneducated place.

It's unethical to go barge in over there, with no introductions or easing into the community, make blanket pronouncements, and then come back here to report how awful parents are on that board.


Oh, I'm familiar with those "auties". I was not being rude, I was telling the truth. I've volunteered with over a dozen autistic kids and not one of them behave like those children. This is acting.



Quite frankly, I am just sick and tired and fed up with the fights in the Autism community and the disrespect shown to parents of Autistic children. The Autism community should be one of support because we all need it. This is one of countless threads on Wrong Planet you see every week where someone has a grievance with ASpeaks or the parents who post there. I don't chat on that board, but if I did, I'd want to do so in an environment where I was not constantly under attack.

Chimchair, if you and others think the "Autism: The Musical" was fake, let's break it down and discuss it scene-by-scene and show me which parts are faked or which children are "faking it." You don't volunteer for Autistic children! There's no way you could have any connection with Autistic kids and say what you've said. The kids in that movie exhibit ALL the classic signs of Autism beahvior and comorbids, hand flapping, toe walking, stemming, ticking, perseverations, lack of focus, transitioning tantrums, non-verval, echolalia, apraxia, OCDs, lack of eye contact. I'm around Autistic kids 24/7 and anyone who watched that and says those aren't typical, high-functioning Autistic kids is not connected at all to the Autism community. Those kids are so high up the Autism ladder until it isn't funny.

For anyone who wants to take me up on the challenge, let's roll with it. We can break it down scene-by-scene and I'd like you to spell out for the world here on Wrong Planet what you feel was faked. Not to mention, if you say the kids are fake and actors, you are accusing the parents of being a part of this. You are accusing the schools of being a part of this. You are accusing their support teams and doctors of being a part of it, too. You think Stills (Crobsy, Stills & Nash) is faking his son's Autism? He's the blonde, Asperger kid. There's a father on there whose company won a Nobel Peace Prize. You think the man is faking his kid's Autism? Anyone on this board who is bold enough to publically accuse this movie of being fake and attack the charcter (truly defamation of character) of the person who made it, needs to back that up with proof. You can't slander this woman, these children and their families without BRINGING IT with evidence that fraud has been commited. And, if you can prove that, then HBO who aired it, the production company who produced it, the distribution company who distributed it, and the charity organization who funded the musical itself are ALL part of the fraud.

Give me a break! This whole Autism community has got to be one so embedded with nastiness and hatred towards each other 'til it ain't funny. Really, it' ain't funny. :cry:



The only problem with Autism Speak was not because of hatred but whether they are claiming they helping or not.

Granted. My parent can say I have Asperger Syndrome but that doesn't mean that she support the whole long nine yard.

Autism Speak is like alliance with CAN Cure Autism Now.

The question is what was done to help autistic?

Can they show any proof in record that money being spent to help autistic or is this a secret lab to protect against other lab that trying to make money off of it?

I am not questioning out of hatred. I am concern and curious of what they are doing so far?

After all, if you go to the autism speak website, you noticed that it an incomplete or broken website. If you ask youself this, what a website that being supported by General Electric and getting donation from families have a broken or incomplete website?

Just wondering...



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01 Apr 2008, 2:01 am

NewportBeachDude wrote:
Quite frankly, I am just sick and tired and fed up with the fights in the Autism community and the disrespect shown to parents of Autistic children. The Autism community should be one of support because we all need it. This is one of countless threads on Wrong Planet you see every week where someone has a grievance with ASpeaks or the parents who post there. I don't chat on that board, but if I did, I'd want to do so in an environment where I was not constantly under attack.


NewportBeachDude, I agree with you. Not about AS; I think its emphasis on finding a "cure" is misguided and wrong and its negative stereotyping of autistics is insulting and unhelpful. The NAS here in the UK is an example AS could learn from. But I read the whole of the thread started on the AS board by the OP and I couldn't believe some of the gratuitous insults being thrown at parents with autistic children, and at NTs generally. I may not agree with a lot of what they say but most, maybe all, of these people are just trying to help their kids.

This

Autism Speaks wrote:
Originally Posted by Rvrkings44
I'm going to offer you a tip...if you HONESTLY want to offer more of a "Asperger's advocacy" view to the parents on the board, you might try avoiding labeling NTs as sheep, robots, conformists, clones, etc. Belittling us really does not make us want to listen to you.


seems like fair comment to me.

NewportBeachDude wrote:
Give me a break! This whole Autism community has got to be one so embedded with nastiness and hatred towards each other 'til it ain't funny. Really, it' ain't funny. :cry:


Maybe, but have you noticed how many people on both boards, and in this thread, are not "embedded with nastiness and hatred " ? The extremists are a minority everywhere.



littlebopeep
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01 Apr 2008, 11:39 am

Samotnik wrote:
have you noticed how many people on both boards, and in this thread, are not "embedded with nastiness and hatred " ? The extremists are a minority everywhere.


Absolutely.

If anyone is inclined to go over to AutismSpeaks, keep in mind that many of the parents posting there are not big rah rah supporters of that organization, but just lone parents who are looking for help. Many are new to autism and many have kids that are newly diagnosed. Many of the parents there have no idea what the AutismSpeaks mission is, they just are looking for some help and the AutismSpeaks forum comes up in their Google search.

The best way to get positive messages out at that message board about autism is to be a positive presence on that forum. Going over with the intention of debating the "AutismSpeaks" mission is generally counterproductive. I encourage anyone who is interested to go over and become part of that community first, bringing your perspective with you. There are quite a few Spectrum adults over there who are appreciated, respected and listened to because they show respect and take care with the many variations of parents who post there. Of course, debate comes along in the discussions, but parents are much more likely to listen to you (general "you") if you are a more-or-less familiar and respectful contributor to that forum.