What do you think of autism speaks now?

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Becides what I've heard of them I'm not sure what to think of them either way.

I don't like the way they demonise autism and try and make it all about the parents, acting like the autistic people they're supposed to be "speaking for" would be better off dead.

To be fair, I've only seen a couple of their videos and heard a few things. I'm sure they're not 100% bad, but I'm very suspicious of their motives.

I still think they're doing good & ever better work.

They're continuing with research into intestinal dysbiosis & probiotic treatments. Obviously, as someone who's had great success with it myself, I support that.

They're also working on more support for adults with autism all across the USA, so that's a good thing.

I've seen the videos people complain about here and I don't see anything awful about them. I certainly don't see anything saying that autistics would be better off dead or any other such nonsense that some people have posted here. I see quite realistic scenarios being portrayed about the difficulties autism creates for individuals and their families & the reasons that treatments and support are valuable pursuits.

So more research into quackery then goldfish?

Sorry, but I will never see Autism $peaks as doing ANYTHING good. They've demonized us for so long and made it seem like we have a god damned curse on us and are a blight on society.

Also, they have NO autistic board members, barely put ANY money into "research" (which is just a cover-up for them looking for a cure), etc.

I despise them and get legit angry when people say they are doing good.

No.. research into effective treatments. There are several researchers looking into gut bacteria causes of autism at the moment. Obviously from my experience it makes perfect sense. But also from a logical point of view, too. We're symbiotic beings made up of approximately 10 Trillion human cells and 100 Trillion non-human mostly bacteria cells. We're about 90% bacteria by quantity of cells. Throw that bacterial mix far enough off balance and you bet it affects the functioning of our human whole selves. Rebalance it as I have, and continue to do/maintain as best I can, and like magic you're a better balanced fully functioning human being - happier, healthier, wealthier, w/ a stronger immune system, better executive functioning, & w/ other brain circuits firing better than ever, ie those responsible for social intuition. I am still just as completely dead serious about all of this as I was in January 2014 when I shared my story of the previous 1-1.5 years here on wrongplanet.

I've been in touch with a few researchers and shared my story with them, too - including the researchers at Autism Speaks, who did read my story and reply. Most recently http://www.NofOne.org was brought to my attention by a fellow forum member and I emailed Mr. Sodakis my story. I've yet to receive a reply, but I do hope he reads it and gets some value out of it. I've also planted the seeds of a possible Naturopathic medical study being conducted based on my findings and experience with my ND friend Dr. Keyzer. I have another friend who's mother was a cofounder of a local chain of medical testing labs that I may be able to swing a deal with in terms of lab tests to complement said study. It won't happen overnight, though, as undertaking something like this is going to be very expensive and I simply don't have the funds to bankroll it. If no one else does it by the time I do have the sort of money to do it myself, well, then I'll do it. That may be years away yet - but maybe not if I were to crowd fund it at some point.

Blah blah blah, I'm sure you're bored with reading about things that could treat and improve the negative symptoms of Autism - but some of us embrace things like this because we want to live better lives than our symptoms would otherwise allow. And I am. As I've said before, I'm living a second life for having learned and done this and e v e r y t h i n g is better - and continues to get even better. I do things on a daily basis that were once impossible and I don't feel like I've reached anywhere near my potential. Instead of being frustrated spinning my wheels going nowhere, I'm going nowhere but straight up, forward, and onward with my life, work, sports, finances etc. I've created the possibility of realizing my potential vs. wasting it - and I am Not wasting this second life of mine. I'm working towards goals that were once just out of reach dreams.

The only thing that's a curse & blight on society are negative attitudes like yours towards people doing tireless work to help others improve their very state of being. IMO.

Who cares if they have no ASD board members? Not me. Chances are you simply want a board member that agrees with you vs. an autistic one.. as I bet if I were a board member there you wouldn't all of the sudden think great things of Autism Speaks. And so what if they are looking for a cure? That's not necessarily a bad thing. I don't know if I'd want a complete cure.. but as far as effective treatments go, I absolutely LOVE that I can minimize the bad traits & optimize the positive ones. I can now DO things I couldn't before & utilize my natural engineering mind to problem solve, build, create etc.

IMO, it's because you get "legit angry" that you ought to embrace the help of anyone conducting research into effective Autism treatments. Who wants to Be "legit angry"? Certainly not me & I can't imagine wanting to stay in that state if there were something I could do about it to mitigate those symptoms. To each their own, though.

NO VIDEOS THAT ARE BAD? What about the famous Allison Tepper Singer one? (See below.)

No reasonable person would dare suggest that an organization comprised entirely of men represents women’s interests or that an organization led entirely by white people represents the interests of people of color, yet the same standard evidently does not apply to disability organizations despite the existence of many cross-disability and autism-specific organizations led by actually disabled people. ~ Lydia Brown, Autistic Hoya

1. They support eugenics. Alongside salaries, most of their donations go to a genetic test for autism so that parents can abort their children or fetuses when they test positive for autism in the womb. Yes, the test can be useful to plan for a child’s life, but let’s admit that with society’s attitude right now, most women would abort an autistic fetus. They just want to wipe us from the gene pool. One woman who worked for CRDI (formerly the West Montreal Readaptation Centre/ Centre Readaptation de l’Ouest de Montreal) told me she wouldn’t abort a kid because he didn’t have the right color eyes, but that it’s a woman’s right to abort an autistic fetus because it is autistic. When I told them I considered boycotting the facility, they told me I needed to work on agreeing to disagree. However, I say that agreeing to disagree does not mean letting the opposition walk all over you and giving in to them.

2. They are against autism… something that we ARE.

3. They are in it for the money.

4. They don’t have any autistic on their staff. The one they did have on their staff, John Elder Robison, resigned in disgust when he realized what he was supporting. He was a pawn anyway. He was a well-known author who was for neurodiversity when they weren’t.

5. They spend most of their money on themselves. Most of their money goes to salaries.

6. They silence autistics. They threatened to sue a 14-year-old autistic girl once for making a parody of the site. Parodies are perfectly moral and, under the Fair Use Act, perfectly legal. Then they threatened to sue an autistic named Zachary Lassiter for selling t-shirts that said “Autism Speaks does not speak for me. I am autistic. I can speak for myself.”

7. They don’t pay autistics for writing about their own experiences, but they pay thousands to so-called parents to complain on the Autism Speaks website about how their children are such a burden and a waste of space.

8. They support the murder of autistics, including the children. Allison Tepper Singer, a mother of a little girl named Jodie, said in the video Autism Every Day that she had fantasies of putting Jodie in the car and driving off the George Washington Bridge, and that the only thing stopping her from doing that was her other daughter… the typical one.

9. They have double standards. They say we should be positive about Autism Speaks and not bash it because that’s negative. Well, we’re bashing them because they’re not being positive about us. Autism Speaks, how about YOU say something positive! This also goes for the agreeing to disagree thing I mention in the first point in this list.

10. They tell people to donate first and read their pamphlet later.

https://www.youtube.com/watch?v=ez936r2F35U

Watch that video goldfish, last thing I'm ever going to say to you on the forums.

Please can we not provoke goldfish?

It's obvious Autism Speaks don't care about us, or they'd listen to us, rather than silencing us and wasting money on "cures".

I think the people who speak for Autism Speaks are nothing more than shallow, superficial a-hole talking heads. For all we know, some who work for Autism Speaks could be on the spectrum themselves.

Autism Speaks is as much of a support organization as Scientology is a church. Just because they say they're here to help, that does not make them helpful. I have yet to see where Autism Speaks has done anything to lighten my burden or enable me to greater success.

Autism Speaks Does NOT Speak For Me!

Perfect comparison.

I don't really like autism speaks but in the us Is really hard to find things that don't support autism speaks and my camp seams to like it. Its too bad we can't cange and become autism speaks so there will be help for autistic people now and no prenatal testing.

I don't know what to think about Autism Speaks but I am curious why people seem to have something against Goldfish and his ideas? Has there been a massive argument or something recently?

The problem: If it WAS the true cause, the cure that worked on you would WORK ON EVERYBODY.

It doesnt. And that's one of the reasons why people tend to be against that, because the idea of there being an actual, full cure, doesnt make sense to many.

I've had cause to think about this somewhat, and something has occurred to me: Something like that can work on someone if autism ISNT THE ONLY CONDITION THEY HAVE. I've noticed that when I have something wrong with me, let's say, something simple like my #%)&*-ing allergies, all of my autistic tendancies dont just get worse, they outright MULTIPLY. I'm a walking disaster at that point. Cure the allergies (or I guess I should say, shove them back into the hellish nightmare box they came from, temporarily), and my "symptoms" of autism very drastically improve. I've noticed this in other autistics I've met as well; the more agitated and such they get, the more the autistic stuff intensifies.

If an individual has been suffering some sort of condition, wether mild or otherwise, that nobody has really entirely noticed/diagnosed, and then suddenly takes something that happens to have an effect on it, this may affect the severity of the autistic symptoms as well. Something as simple as not getting the right nutrients (which I think alot of people dont realize they have... you know, alot of people arent exactly on healthy diets these days) can drain your energy, and that doesnt exactly improve your condition. But fix that though, and you work towards improving many other things... and the autistic effects may diminish. But not because something was "causing" them and was removed; moreso, because they're returning back to their ACTUAL default state, whatever that is for that individual. Like me with my allergies; those were downright CHRONIC up through highschool and a bit into college, and at that time, my autistic tendancies were alot worse too. Since that's cleared up, I'm dramatically better. Or I guess I should say, I'm at my ACTUAL default state. The autism is still very definitely there, but it's not at it's previous level of "screws absolutely everything up". It's at a point that makes sense to me.



Anyway, just a theory of mine. Nobody has to agree with it. I have alot of free time to think of random things like this, haha.

My point though, is that instead of trying to worry so damn much about a "cure", particularly when there's so many autistics that DONT WANT IT, these people COULD be working to just improve the lives of, and assist the autistics they SAY they're trying to help. But they dont.


As for my own opinions of Autism Speaks though.... ugh. I'll just say... I didnt really know about them till recently. Then I had reason to look them up. I now have nothing but hate for them, after seeing some of the crap that they put out. I'll put it this way: Even if for whatever reason I supported the IDEA they were purportedly working towards... in this case, the "cure" they say they're after.... even if I thought that was the most noble cause ever, I'd still hate them... because of the way they're going about it, and because there's SO VERY MUCH to suggest that it's not really their ACTUAL reason. I've heard some describe them as "not wanting to help autistics, but instead wanting to help those that have to DEAL with autistics", and everything Iv'e seen about them goes along with this. Hell, there was one video where they were showing all of these parents with autistic kids that were making them miserable. There was one woman who said that she'd genuinely considered just getting her and her kid into a car, and driving off a bridge, and the only reason she didnt was that she had a SECOND kid. Just... think about that for a moment. Oh, and the child that would have gone off the bridge was literally standing right next to her at this point, kinda impossible NOT to hear. And this woman was used as a constant example throughout the whole video, like you're supposed to sympathize with this wacko! Not to mention, the poor kids were ONLY shown screaming, screaming, or.... screaming. Because, clearly, that's what autistics do, is shriek all day! And of course EVERY day is one of their bad days! Ugh. THey're taking that, and showing ONLY the bad parts. Never the good days, never the good moments, and that's how every single bit of material from them has been that I've seen.

Just.... ugh.

Hmm, rambled on a bit more than I wanted, but I wanted to get that all out, so.... there ya go!

I think it's just because it's a touchy subject, and one he's very often poking at.

Which isnt bad in and of itself; I know *I* sure as heck tend to repeat myself over and over and over and over on certain subjects, until something happens, even if I"m not sure what that "something" is. I think ALOT of people in this place do that.

But when it's a touchy subject, that.... sets people off.

Nothing more than that.

So it's not HIM they have a problem with, it's just the subject itself. it's very nature is bound to cause arguements seemingly at random.

About the cure part, there is no cover-up, it is out in open. That is how they get money and support from desperate people. If they said we will ease problems instead of getting rid of problems they would get less money.
NBA Stars "Tip-Off for a Cure" in New York City

Bolding is mine