Why does everyone hate Autism Speaks?

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Again, you ENTIRELY missed... or simply ignored, which is what I'm beginning to suspect.... my point.

Within the CONTEXT of their current method... which, as I pointed out, is an obsessive method of simply pointing out only bad things, and cultivating fear and other dark emotions... yes, they are doing successful. They are using the fear method effectively.

HOWEVER. They could be doing MANY TIMES BETTER if they temper that with the POSITIVE stuff. As I said: Effective advertising in this case, REALLY effective advertising, would be to show the bad stuff.... and then show how they, Autism Speaks, could help people transition from that bad state.... to a potentially GOOD state, using the services they provide. Explain how they can improve the lives of those that are living under the shadow of autism (perceived shadow, that is, as again, plenty of us arent exactly being utterly wrecked by it, yet still could use some assistance in some things). Instead of just going "HOLY BALLS, IS THIS EVER HORRIBLE. ITS SO BAD. LOOK AT THIS KID STICK HIS FACE INTO A BLENDER. GIVE US DOLLARS AS WE PURSUE A RATHER DUBIOUS CURE WHILE NOT ACTUALLY DOING ANYTHING ELSE TO HELP." Wether you believe that that last bit is indeed exactly what they are doing is irrelevant: A HUGE number of people DO believe it, and this is where the enormous, boiling hatred for the group comes from.

And no, that ISNT debatable. Despite my high level of sarcasm. As long as my explanation was, this isnt a complicated aspect of things: This is actually a very SIMPLE business practice, to do the sorts of things I speak of. Most of the truly successful services out there do this, and again, I dont get this just as random theory I came up with; I get this by learning from business-types who are VERY successful at what they do, and have tons of experience and knowledge of this sort of thing.

Yes, you can get what you want with the methods AS uses. But if their leadership had more than 3 functioning braincells... they'd want to go the way that MULTIPLIES what they get with their current method. That they dont just further proves how low they are at this point. Seriously, the increase in funding would be bloody MASSIVE, if they did it right. But not only are they not doing it right... they're not doing it AT ALL.

Yes, I share the same view actually: I mostly brought up the business end of things sort of as a method to show that these guys, for all of their white knighting, arent even truly EFFECTIVE at what they do, compared to what they COULD do. And that, at the core... they may not actually care about that fact.

But not just that: If they really, HONESTLY wanted to help those with autism, instead of silencing them through whatever method.... why, then, would they use the cultivation of fear, hate, and a lack of true knowledge of the variety of experiences with autism? Why do they ONLY show the bad stuff, and persist in this attitude of "we need to remove this evil disorder", instead of trying to spread acceptance and knowledge, while saying "Yes: You CAN lead a good, happy life even with this. We will explain it to you now, and show what we can do to help you achieve this". Why would they pursue it the way they do, when simple logic says that the other method would be more effective? That they dont do this.... it's not just about the business aspect; I rambled about that because A: I tend to ramble, and B: I tend to take an interest in advertising (or publishing, when that applies to the function or industry in question) and know alot about it, and C: I was bored. It's also about it not adding up with their supposed mission statement. They claim to want to HELP. Not JUST cure, but actually HELP, those that CURRENTLY need help. But they dont. Nearly none of their budget goes towards that, yet they'll happily pay their own members really damn stupid amounts. And their propaganda doesnt at all show them actually pursuing that idea of assisting others. The concept of spreading dark emotions and ONLY knowledge of the bad side of it does NOT add up, when considered in the context of how they claim to operate, and what they say is their goal.

And I think that's sorta what bugs me the most. They hide under the mantle of the idea of "helping" people. But they really do NONE of it, and instead, seem to want to merely ELIMINATE it... with many possible meanings of that word being true. It's like they want us to simply stop existing. Hell, they always show what a horrible burden we are, to parents and others. And what they go on about isnt making us happy (and often, thus also making the parents happy), but instead SIMPLY REMOVING THE BURDEN. That they showed/featured that woman that was talking about driving her own child off a damn cliff is very strong evidence of this. They wanted people to freaking SYMPATHIZE with her! I mean, just.... I dont even. I really dont.


Just... ugh. I've gotten tired of them, as I think many have, and often I wish something could be done to stop them. But of course, the world just doesnt work that way... and it's very frustrating to watch this crap happen, yet know that nothing can be done about it, unless they basically screw up so badly that they essentially self-destruct.

If a parent really wants to screw their child for life, there's little society can do about it. That's probably why infanticide used to be perfectly acceptable. Besides, there were no disputes about abortion.

I've also been completely transparent about the fact that I am self diagnosed & my reasons for it - I didn't want the stigma of a diagnosis. My only official diagnoses are of ADHD and depression. But I don't need an official diagnosis to know what I know - especially after reading more than 10,000 pages about it, including a couple of Aspergers' autobiographies, plus my lifetime of experience living with it.

See signature.

Dont forget, that one works both ways.

"Just because you believe it, doesnt make it true". It's something that you may want to consider, or at least the concept of it. Both views are valid, but considering one without the other is a mistake.

And besides, chances are... it's what many people are thinking here, at least to some degree.

....besides, how in the world is that response relevant to what you just quoted? Evil Chuck is speaking about your behavior here, which I think is what might be bothering some people here. Granted, he maybe could have phrased it a little more nicely, but still.

Did you ever consider that you may not have even been autistic in the first place? You may have had traits but they can exist for many reasons which is why getting assessed exists. The fact that you've managed to get rid of negative symptoms is unusual. If it was that easy then autism wouldn't exist.

Not really. I have extreme sensitivity to bright light and touch. I can request people not touch me and stay in a dark room most of the day and that alleviates those symptoms-- but both are considered socially unacceptable and so I'll still have the social stigma. Social stigma is in essence the only symptom autistics can't alleviate because it's in the control of people other than ourselves, it also happens to be the one symptom most austics would actually like a cure for.

No. Like I said, I've read more than 10,000 pages about it as well as experienced everything in Tony Attwood's book "The Complete Guide to Asperger's Syndrome" for myself over the last almost 33 years of my life. I know what I know. I am intelligent and very high functioning vs. well, not, or low functioning.

My ASD symptoms were through the roof 4 years ago. Audio sensitivity was so bad I had headphones in for a year and a half. Dyspraxia comorbid got bad enough that I could barely use my fingers to tie my own shoes. I've had the same social ineptitude as anyone else here complains about. Add in the anxiety, depression, ADHD/OCD/Tourettes symptoms, chronic fatigue etc etc to the nth degree.

But, as I've shared and you can feel free to look it up here or PM me, I met an Herbalist and his father, a Naturopathic Doctor, read more than 10,000 pages, and learned what I needed to do in order to heal myself and control my symptoms - and I've spent the last few years doing exactly that. It has been anything but easy. It's taken a LOT of hard work and discipline. Again, you're welcome to to read my story and judge for yourself.

Further, when I've taken certain antibiotics and ruined my digestive balance, symptoms have returned - inverse proof that my probiotic treatment protocol does in fact work.

I've shared my story with the researchers at Autism Speaks, as well as with an Autism researcher at MIT & others - because I'm dead serious. People here on wrongplanet were extremely skeptical a couple years ago but some are coming around to the fact that I'm telling the truth since there have been several articles about the gut-brain connection and gut dysbiosis & Autism research published in the last couple years.

I've been encouraged to apply to share my story at a local TedX event. I may just do that. If it happens, I'll figure out a way to have my brain fMRI'd a couple of times as visual evidence of 1) I'm not NT and don't follow the NT connectivity map. 2) If researchers/fMRI techs agree with the theory, I'll have my brain scanned in a resting state having not taken any probiotics for a couple days, then again an hour or so after having taken my daily doses & see if it makes a difference in connections lighting up. Not sure if it will or won't, but I'm curious to find out.

Again, feel free to get in touch and I'll share exactly what I've learned and done and you can judge for yourself.

I'd wondered this as well. This is a HUGE part of the reason why I tend not to believe his theories (or other, often wildly different, theories from others). I mean, a lack of assessment.... you can read a bazillion pages of articles on whatever, but the fact remains.... if you are not a LICENSED PROFESSIONAL, you cannot give a full and proper diagnosis. No exceptions. That he lacks it is probably where tons of disbelief comes from. Frankly, I find it hard to take seriously.

It's like people that get sick with something, look it up on the internet (and note, almost all sites that describe symptoms and such very specifically state: "FOR THE LOVE OF PIE, dont take this to be absolute truth just because you are reading it! Info gotten here does NOT replace a proper examination and diagnosis by a licensed professional!") yet go "Oh, I see, I have this. I guess I can do this thing over here to alleviate it), and then a week later, wonder why it got worse, why the advice didnt work. In this case, instead of "why isnt the advice from the site working" it's moreso "why isnt anyone believing this".

Not to mention... a TON of psychological stuff can happen during a self-diagnosis process. It can tilt your answers to questions... without you fully knowing it... towards whatever seems to fit the answer that, unconsciously, you are desiring. There's a REASON why an unbiased third party is needed for this process. That's nothing against Goldfish specifically, mind you. I have this problem with the concept of ANY self-diagnosis. Of any sort.


And as you say... if autism were this easy to cure (or this easy to stop it's symptoms so completely).... it'd have been beaten by now. I mean, really. One guy figuring out, on his own, what freaking LEGIONS of researchers and scientists couldnt for all of this time, and BAM, suddenly, we have a solution? I dont think so. I *guarantee* you, there are plenty of others that have tried changing their diets in a TON of ways, and found it to do.... exactly nothing. Or, there are those who might have been on a very healthy diet TO BEGIN WITH (you cant assume that ALL autistics are junky eaters, that's bloody stupid. Likely, there's plenty that arent), and.... that doesnt prevent the issue.

I mean, really, all of the constant, CONSTANT arguing between groups of researchers and such about what the cause is (which, you might note, varies WILDLY from one theory to another) it seems that nobody has actual, definitive evidence of.... anything at all. Right now, NOBODY knows for sure what causes it. Some may be on the right track somewhere, but I really doubt it. It's good that there are dedicated people working towards the cause, but is there a cure now, or are we even close to one? I think not. There's just too much evidence right now that, overall, people are bloody clueless on the reasons behind the whole thing. Lots and LOTS of theories... but none of them able to fully stand on it's own against the others.

Last edited by Misery on 22 Aug 2015, 11:24 am, edited 1 time in total.

Not sure exactly what to judge or what to ask. Not calling you a liar or anything either. Not the first time I've heard of the gut link. I can't judge until I know enough.

Something occurs to me though: NONE of this has to do with AS. And all of it is repeating stuff that has been repeated on this forum over and over and over again in different topics.

Maybe time to just let the topic go back to what it was? This same arguement back and forth accomplished nothing the last 30 times it happened, it aint gonna do anything useful now.

Sensible point, IMHO.

My main reasons for disliking A$ are much like what others have already said here, i.e.:
1. Their aggressive attempt to censor free speech via that T-shirt.
2. Their channeling of so much donated money into the pockets of one (or maybe more) director(s).
3. Their dissemination of the idea that autism is nothing but a dreadful curse that must be annihilated.

They also annoy me with their general style of promoting their stuff, which I find hideously over the top and aesthetically nasty.

I've already stated dozens of times over that I never sought a professional diagnosis because I didn't want the stigma of it. Regardless, just like any of the self diagnosis discussion threads, I know what I know and don't need a third party to tell me it. I know what my entire life's experiences add up to. Period.

Further, while I am the only person on the planet who has done exactly what I have to treat my ASD symptoms, I am far from the only person to alleviate symptoms via diet/probiotics. I've read about many. Also, there's an episode of "The Nature of Things" with David Suzuki (host) called "The Autism Enigma" that's about a couple of families with autistic kids who improve symptoms via diet & in one's case, mass amounts of probiotics. That kid's mother goes on to talk about some specific gut bacteria they believe may create a neurotoxin that exacerbates symptoms. Go find & watch the episode - everything presented there jives 100% with what I've been sharing here about myself for the last couple of years.

And I've explained why people keep not believing what you say. Regardless of "evidence".

One way or another, YOU may not care about getting a diagnosis for whatever damn reason (no, I dont care why...), but REGARDLESS of that, it makes it MUCH harder to believe you. And like I (and others) have said: One way or another, it's just not that easy. Do all the damn research you want: one person alone (or even a small group), VS about a billion researchers that, themselves, have no answers (and cant even agree on the concepts behind the whole thing!), yeah... that dont add up. What works for you, likely will work for certain others... and fail entirely on others beyond that. Which means it doesnt even qualify as a "general" treatment. I dont believe for the tiniest, most miniscule fraction of a millisecond that it'd come close to working on everybody, or even most people. Not. For. A. Second. Like I said also.... there's no way in hell you're the only one that's tried this "brilliant" idea. No, I dont care how much you think you're the "only one on the planet" (....seriously? I mean.... seriously? NOW you're getting a bit into "totally absurd" territory. That kind of arrogance, to even say such a thing in any context, makes it even harder to take your arguement seriously) that has done... anything at all. Lots of people like the idea of getting a hyper healthy diet, and lots more will have researched this in the same way that you did, and the ideas behind the diet itself (and similar, related things) arent exactly unique to you. You even mention this yourself. Yet you might notice: nobody has come forward and cured it yet. Or come anywhere near it. Theories still vary extremely wildly. Those things, they should say something.

Regardless of any of that though... this conversation ends here. My points have been stated in extreme detail, others have also chimed in a whole bunch, and really, this topic has been derailed enough. And I prefer to stop before I get... incensed, which happens to me easily if a debate of any sort goes on too long; this is why I made the short post just previous to this one. I can be negative and abrasive enough without entering that particular state; I'm *really* nasty if I do start to reach that point; not to mention I start to get more absentminded and rambly as I get closer to that, which may be apparent in this post. I'm reaching the point where I stop being entirely sure that I'm making much sense.

You can think what you want of my opinion on the matter; as usual, I really dont care all that much, irritable though I may be. You can also repeat that tired rhetoric as much as you want on the forum here... it's not like it breaks any rules or anything, though it does seem to annoy some people, but that's nothing special in and of itself, as LOTS of things annoy people in this place. Which is fine.

Either way, my part in this ends. Others of course may feel free, I suppose, to jump in and comment on it again if they like, though I rather suggest that they dont (again, derailment, among other things), but it's not actually my problem in any case. And one way or another, this is likely to repeat.... again.... later on, though not likely with my presence; it'll be someone else, next time.

Again, told ya - stigma. Further, I'm not willing to take antibiotics and send myself back to autistic hell by reamplifying my symptoms like last October just to please some random person on the internet with an official diagnosis. No chance. The ONLY way I'd do it is if I were being paid to do it as a medical study, because it would literally cost my ability to function & work and earn a living if I did it to myself. If the bills were paid, I'd give up my time for the purpose of advancing medical knowledge. Otherwise, get bent lol. Not you, just anyone in general who thinks I should do that to myself vs. function as optimally as possible.

I don't care what you don't believe. I know my diagnoses, as well as the effectiveness of the treatment protocol I've developed for myself, and that my prognosis = healthier, happier, wealthier, second life.

Find me ONE other person on the PLANET who has followed the exact same diet, intestinal cleanse, herb/supplement & probiotic treatment protocol and I'll give you every penny I have to my name. Exactly. You can't, because I am the only person on the planet who has done exactly what I have done to treat my symptoms.

Further, I couldn't care less what teams of researchers are busy not figuring out. I know what I've learned and done and how it's changed my life. I also know that the vast majority of Autistics have GI issues - and I know why; and that the GI issues directly cause or exacerbate ASD symptoms. Period. There have been many articles published about this over the past couple of years - some of them by Autism Speaks. I don't know why you think I'm the ONLY person stating these facts. Chances are pretty damned good that this is the cause of MANY other peoples' symptoms, too. I am not a unique snowflake one-off case of autism that's caused/exacerbated by antibiotic induced intestinal dysbiosis. I'd bet money I don't have that it's the most common cause of autism & in time your holier-than-thou researchers will be able to tell you that and maybe then you'll believe it.

I'd just like to point out one more time that there is NOTHING in it for me to make any of this up. I'm not, and never have been, selling anything. Feel free to look up my posting history here as others have done. I've been around a few years and posted about all the same issues the rest of you have.. except for the last couple years-ish as I've been infinitely healthier & happier now that I've figured out how to turn my brain on and have it work for me vs. against me. You're welcome to stay in your own state, (of?), Misery.