What is the truth about Autism Speaks??

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I agree. I like to come here, and speak my mind, without bullies like you, winding me up. I'd also like to stress that Autism Speaks does not speak most of us, who come here, to post. Today's children will have a better future, due to patient, easygoing teachers, who are willing to work with all types of kids. I give today's teachers the credit, because they are willing to listen to what autistic children have to say, and they're the ones who realize that there are a large number of people on the spectrum, who are high functioning. What level of functioning is your kid, anyways? I hope that your kid doesn't grow up to hate you, because of the way that you are supporting Autism Speaks. I've noticed how you follow the rest of us members around the boards, just like a bully on a playground. This is not a playground, this is a public forum. If you stalk me and flame me, I'm just going to ignore you. I'm sure that the Autism Speaks web community is waiting to hear posts, that they can relate to. I have my reasons, for not liking Autism Speaks. You should watch the Autism Everyday videos, to get what I'm talking about. Maybe you already did, and you think that your child will never get anywhere in life, no matter what level of functioning your kid is. If a cure is forced upon me, because of Autism Speaks, I'm not going to take it. The reason that I refuse to take the cure, is because I've learned how to adapt to my AS, and the world, around me. Autistic children need parents who are patient, accepting and understanding. Are you willing to be patient, accepting and understanding. I hope that Autism Speaks isn't advocating Chelatin Thearapy. I'm for orginizations that wish to offer support, for people who are on the Spectrum. I'm not for orginizations who try to receive pity from the public. There are a lot of people on the spectrum, who do not wish to be cured. I think that all of us at WrongPlanet are more than able, to speak for ourselves.

Last edited by CockneyRebel on 20 Mar 2008, 8:27 am, edited 1 time in total.

Well said Cockney, [Or is it actually Sid, that does all the posting?...]

CockneyRebel, up until 2006. Sid from 2007, onward. :O)

Unless I'm mistaken, the only one who implied that WP members aren't doing things in a civil way is yourself, misunderstanding or fabricating our intentions. Your tone of message saying that some of us are "hating on this organization" sounds like you're dismissing the real and serious issues, as if we're a bunch of teens that are just looking for something to throw our weight on.

Ironically, it looks like you are the one doing the trolling.

Again, insults won't win your argument. They reflect upon you, not me. I've stated an honest opinion and just because you don't agree, it's an easy copout to call "troll." Especially when you avoid answering legitimate questions, particularly the ones I've asked about regarding what Aspies are doing to help Aspies out there who are struggling.

And, as far as Cokney's post, I was told this board was open to Autistics and parents or caregivers of Autistics. If that has changed, the owners of the board need to let me know that, not you. This isn't your board, nor is it mine. We are guests on this board because an outstanding Aspie took the time to create a space where those on the spectrum could chat. I do believe the board was created by and Moderated by Alex, whom I have a lot of respect for, even though I may not agree with him. He has never insulted me and allows me (and others who share my views) to post freely, although I'm sure he doesn't always agree.

You can argue with me until the cows come home, but flames aren't going to change my opinion. I support Autism Speaks and until you show me the organizations you support or what you're doing to help Aspergians out there who are struggling every day with issues, I stand firm that the Autism community needs organizations like Autism Speaks. But, the ones who don't like it should not be bothered with it. That's all I'm saying. I feel their efforts would be better spent creating, supporting, acknowledging organizations that speak for them!

SDFarsight, I'm sorry but there have been countless threads on WP hating on on Autism Speaks. When I first joined, there was thread called "Hating Autism Speaks." And, I've read posts about annihilating Autism Speaks. And, posts where members here go to their board to stir up trouble with parents there. Countless.

It wasn't made up. I wish it were. Again, we know what organizations you don't like. My point is, give us the ones you do like and why. Let us know about these groups and why you support them so that people can see the difference and understand exactly which ones Aspies would support. That's my point...not to go on hating something you're not going to change.

Hey, man, I say take your own advice and ignore him.

As for me, I just skipped right over his last several posts.

I do think that you may be missing a couple of important points here, NewportBeachDude, so I'll try to explain it.

Generally speaking, autistics are not good at those forms of organisation that the "normal" world insists on. I strongly suspect that this in itself constitutes the main reason that autistic-run organisations are few, fragmented and disorganised (with apologies to those that are not).

I would hope that this situation is steadily changing. We actually NEED people like you to run our organisations, because we are cr*p at that sort of thing (again generally speaking).

What we see in Autism Speaks is a well-oiled, money-spinning machine. We envy it. That much is true, if we are being honest. All that money to play with.

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The first problem we have with it is its name. We're sticklers for accuracy (have you noticed?) and the name suggests that is is "autism" that is speaking. We look deeper, and find the organisation to be devoid of any speaking autistics. Autism Belly-Speaks. (For those that miss that, I just thought of it, and I don't know if I'm the first, but "Ventriloquist" literally means "Belly-speaker".)

Next, we believe it uses unprincipled methods to acquire its funds. It uses scare tactics and proffers the carrot of a mythical "cure for autism" to desperate parents.

Those parents are then sheltered from any dangerous knowledge - such as the fact that the majority of autists get along pretty well in the world, provided they get a little assistance, and are not shoe-horned into living a life that is constantly stressful.

We also feel that it misdirects its funds. After the half that goes back into the organisation itself, the rest is mostly spent on genetic research for a cure. From their records, I saw none of the money going into support or treatment for autistics.

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Personally, in the UK, I am lucky, and have the NAS. They are an organisation that grew in much the same way as Autism Speaks, from a predominantly parent-based start. However, they have always (I think) treated research as low-priority, focusing on support and education.

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The royal "we" in the above is used without a licence.

And please don't harass people for venting about "Autism Speaks". Sometimes they are hard to avoid, and their stuff gets a little insulting.

I couldn't agree with you more. Ignore posts from opposing views and that'll settle half the arguments. Well said.

Lau, I have to give you credit for actually trying to answer my questions without attack, name-calling and accusations. I appreciate that. But, being that Auties are more severe, they may have a hard time getting an organization off the ground, but I don't believe Aspies would. I mean, this whole issue boils down to Aspies being treated and seen as equal and having society accept them. That should be the foundation of them forming their own organizations and running with it. I think Aspies are totally capable of doing that.

Do you know many of the Autistics organizations were founded by moms, some of whom didn't have a dime in their pockets? They did it out of passion because they wanted more awareness and services for their children.

Like the one you mentioned above, there are many organizations here in the U.S. that don't do research and whatnot. However, there should be room for all. Autism spectrum disorders are not a one-stop, fit-all type of thing. The spectrum is huge. The needs are many. And, not everyone is seeking the same results. There are people out there dying for a cure. Whereas others are content to accept what they're dealing with either through treatment or without. Therefore, we should have organizations that represent a multitude of positions on Autism, approaches to treating or curing Autism, and bringing exposure/awareness to Autism. So...like I've said many times before, if Aspies truly feel this way about these organizations speaking for them, it is critical that they start their own so that they can have a voice as well. Seems to me that having an Aspergers Organization to rally behind would be a more constructive use of time and energy and one that wouldn't insult the positions of many in the community. That's the point I'm making.

NewportBeachDude, You raise some good points. An aspie with a special interest in the welfare of AS/HFA adults would have a lot of the skills and drive. What a lot of us lack is organizational skills in the planning sense; Long term goals for example, and how to get them done. We put our noses down and plow pretty well, but meta-tasking and people organizing are not so great.

But thats true of any organization. But the leader, the genesis, should be a people person. Thats why aspies make good engineers and not so great CEOs.

I have an old post about making an aspie home, or homes for disabled people. I'm having a hell of a hard time getting anywhere. I want to form a charity too.

http://www.wrongplanet.net/postt45102.html

There it is. Some Aspies really are working towards helping others.

the one thing that ticks me off is how they give you so many treatment option...but they leave out "not giving treatment"

as if thats a bad thing.

I don't struggle with anything. I'm very good, at keeping it, together. I'm sure that most of us, here can manage quite well, with life. Wouldn't most of you agree?

You know, you all have me thinking. I've oftened wondered what I'll be doing with my time once the children are fully grown. Go to work full time (I currently work part time)? Find volunteer work to replace all that I do at their schools? Do what many do and get involved at the church? The later is kind of what I've assumed. But maybe I should set my sights on helping Aspies pursue their goals ... I have a little business sense, and a little marketing sense. It just isn't on my horizon right now, while I have a 10 year old Aspie son and a 7 year old NT daughter to help through childhood. But ... would you all WANT a mostly NT parent in that role?

About this thread and other threads on this board,why are people so nasty to NewportBeachDude? am think it is not nice that he has been called a troll and other things when he isn't,NewportBeachDude is good to have in the WP community,he gives a different view to Autism just like everyone else, having a different experience of it should not mean bad.