What do you think of autism speaks now?

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I like how your posts are fueled with passion

it energizes my soul

I don't.

I get why there are some strong reactions to the video.. but the video isn't demonizing autistics so much as it's demonizing autism & the difficulties and challenges it can impose upon people and their families. Also, it's a marketing piece designed to solicit feeling from potential donors.. it has to be a bit over the top in order to be effective. Further, while you've likely watched the whole thing, some posts complaining about this video seem as if the posters didn't watch the ending - the positive side of people throwing their support behind one another and committing to overcoming the difficulties and challenges that autism can thrust upon their families. That's a positive message, IMO. The first bit demonizing autism is just sensationalism for the sake of evoking emotions & soliciting donations - nothing really worth getting one's panties in a bunch over, IMO.

The thing about AS though isnt one video, isnt one event, isnt one ANYTHING. It's the collective.... EVERYTHING.... that they do.

Think about it: There's got to be a reason WHY so many people... autistics in particular... hate these guys so very much. And in my experience, autistics... including myself... tend to be very detail oriented, and have a tendency to like to research things, rather than just believe the first thing said to them. Which is in my case why their endless propaganda doesnt work on me. I suspect it's the reason for many others. And believe me, it's not just autistics that cant stand those guys.

Even a great group, a great company, can put out a video or something that makes them look like absolute asshats. In gaming, there's Nintendo, for example. They put out alot of games and products that people love, that are stuffed to the brim with actual content and rewarding gameplay. While I personally have my issues with them, they do alot of good things. But they did ONE, and I mean only one, specific thing recently (the "creator's program") that suddenly has everyone violently spraying f-bombs at them. DESPITE all of the OTHER stuff they do that's good.

With AS, I honestly get the impression that people will hear a couple of good things about them, and believe it not because it's logical, and certainly not because it's proven, but because they so badly WANT to believe. Most havent run into a group like that before (one that's focused on autism), so to them, it's their first hope. And with the difficulties they go through, and AS's videos that are focused on helping them *instead* of the autistic individuals they live with, it's a combination that cannot miss. AS knows this, and capitalizes like crazy. There's actually alot more elements to this, and I could carry on this analysis for AT LEAST 5 pages of text (and I do mean "pages", not "paragraphs"), but you get the gist of what I'm trying to say.





Well, they're fueled with SOMETHING, sure... I dunno that I'd call it passion.

...but I dunno what else I'd call it either, so.... whatever works.

I dunno what I'd call alot of things, come to think of it.

I do not think those two are really distinct in practice, no matter how much you and Autism Speaks may want them to be.

If a teacher doesn't know anything about autism besides what Autism Speaks tells people, and they find out they'll have an autistic kid in their class next year, I can guarantee you they won't be thinking 'he'll be a great kid who needs a bit more help'. They'll be thinking 'oh, no, he'll be having meltdowns nonstop and ruining the class for everyone else'. And if you go into an interaction with negative expectations, you'll bring out the worst in others.

I've usually been treated much better by people who know virtually nothing about autism than by people who work with autistic people on a regular basis. People who work with autism treat me like a spoiled brat kid who needs to be given firm and unyielding rules with no room for accommodating my needs, while people who deal with disabilities in general but not autism specifically ask me what I need and do their best to meet my needs I sincerely hope Autism Speaks and others like them are not successful in raising more awareness, because every bit of work they do means more people who will treat me like a spoiled brat kid rather than a real person with feelings who does things for a reason. (By the way, actual, real life spoiled brat kids still shouldn't be treated this way. Everyone responds better if you listen to their perspective and find a reasonable compromise rather than just dictating rules.)

Yeah, that's been pretty much my experience as well.

Simple awareness doesnt mean a whole lot. Awareness + understanding + acceptance, however, is what is actually needed. And AS.... isnt exactly about that last one, and not so much the second one either (what with always, ALWAYS showing just the bad side of autism, all the screaming and such, in their videos much of the time).

I hate that video but like the parody I am autism speaks

I hate them. They are sickening. The end.

1) It's an effective treatment, not a cure.

2) You're assuming that there is only one cause (or one thing that exacerbates) Autism. That has not been proven or disproven. There may be multiple causes.

3) "Everyone" hasn't tried what I've done, so there's no way to know how many it will or won't work for. I suspect it will work for many, though, considering that I've read that 70% of those on the Autism spectrum are sensitive to salicylate acids, and that 90% of those on the spectrum have gastrointestinal problems.

4) There's no way to know if the intestinal issues simply exacerbated my ASD symptoms, or if intestinal dysbiosis is responsible for the autistic wiring of my brain during it's development. So, it may be that it was an additional condition, or it may be that it was the original causal condition. One day science will be able to explain it to us all. Perhaps it will be the good researchers at Autism Speaks who put it all together and share it with the world.

5) Allergies are an excellent example. It could be that ASD symptoms amplify with immune system changes/responses, or inflammation caused by allergies etc. I don't know. But I do know that I used to take 2-3 24h allergy pills per day for years on end & that now I haven't taken an allergy pill in over 2 years as I haven't had a bad enough reaction to any plants or anything to really bother. Along with all of the other symptoms I've described all but disappearing completely, my allergies have also been minimized.

6) While it's possible that I had nutritional deficiencies I was unaware of, it's highly unlikely. I've always eaten a diverse and fairly healthy diet including plenty of fruits/veggies etc my entire life. I was never one to be a picky eater w/ a very limited food list like some autistics. I agree, though, it's possible that nutrient deficiencies may contribute to ASD symptoms.

7) Just because they may develop an effective treatment protocol (as I have for myself) OR an actual cure does not mean that you, or anyone else, is obligated to take it. Why do you feel you have the right to protest against others' rights to have these options available to them should they want them for themselves? Live and let live. You can be as autistic as you want all day long, that doesn't affect me, but IF I hadn't already figured out an effective treatment for myself and was waiting for someone else to do it for me I'd be rather annoyed that you think those working towards said goal shouldn't be doing it. What's right for you may not be right for me, and what's right for me may not be right for you - it's not up to you to make decisions for me or others, or me/others to make them for you. Simply ignore Autism Speaks if you don't like what they do. It really is as simple as that.

As for "help now" vs. researching treatments or cures, Autism Speaks IS helping people now. I recently read that they're undertaking a USA nation wide expansion of services for adults with autism because no such support services really exist. Besides all that, I do agree with them focusing on treatments vs. "help now" though in the sense that "give a man a fish, feed him for a day, teach a man to fish & feed him for a lifetime." They're working towards long term lifetime goals, not momentary bandaids, and IMO that's where their main focus ought to be.

9) I see nothing wrong with them wanting to help families & friends of autistics "deal with" autistics. There are a lot of things about ASD that are incredibly difficult, frustrating, and downright infuriating for others to deal with. If Autism Speaks can give others the knowledge, tools, and training to interact and communicate more successfully with their autistic loved ones vs. getting driven mad by ASD behaviour - all the better, I say. And I say this from my own 20/20 hindsight experience of when my own symptoms were 20x+ stronger than they are now. I'm extremely fortunate to have friends in my life that tolerated an awful lot of intolerable behaviour while my brain was functioning at its lowest points in my life. Luckily for me, certain people in my life are naturally able to deal with things like that very very well, but I can imagine that most people cannot and could certainly use guidance in order to navigate their relationship with ASD people in their lives. There is absolutely nothing wrong, IMO, with Autism Speaks, educating people about ASD and how to deal with ASD people in their lives. It makes for less stress for all involved, autistics included.

10) Again, I acknowledge just how difficult it can be for some people to deal with ASD individuals & that it can drive them bat s**t crazy to the point of "driving off a bridge" sort of thoughts. Further, Autism Speaks' videos are MARKETING designed to optimize the emotional response of the viewer in order to solicit donations. They're not going to do very much fundraising for treatments/cures by showcasing the best of Autism that people don't feel needs to be treated at all. They Need to amplify and portray the negatives as best they can in order to get others to feel they ought to contribute financially to their cause of finding successful treatments or a cure. I don't fault Autism Speaks one bit for this. It's very classic "tell me how I'm measured and I'll show you how I'll behave" stuff. If their donations increased by showcasing happy heathy autistics engineering the world, then they'd be doing that instead... but it's fact that people wouldn't donate towards treating a condition that made people into happy healthy engineers. They donate to causes they feel are worthy of time, energy, and effort to treat - so, obviously, the negative side of autism has to be played up for maximum donation revenues. Simple as that.

You might want to research stuff before you say it. Otherwise you'll tend to look very silly.

"The new evangelization calls for followers of Christ who are unconditionally pro-life: who will proclaim, celebrate and serve the Gospel of life in every situation. A sign of hope is the increasing recognition that the dignity of human life must never be taken away, even in the case of someone who has done great evil. . . . I renew the appeal I made . . . for a consensus to end the death penalty, which is both cruel and unnecessary."
—Pope John Paul II

*sigh*

Okay, lemme pick out a few things here.

Number 1: The momentary band-aid bit. Seriously? I mean... seriously? This is one of the sorts of things that, I think, is what causes people on this forum to disagree with you so often. Because this is very.... well, let's just say, it's not very good logic, nor does it even entirely make sense.

Think of some homeless guy on the streets, right? Been there for awhile now, with every day being a trial, trying to find food, trying to find shelter, trying to find someone who GIVES A DAMN. And probably even trying to fight off disease, too. Every day adds to his problems. Every day is worse and worse, and he NEEDS help. Now, there's two types of groups here, that'll be focusing on guys like this. Number 1, is a group that does things like AS does. Do you really think that our homeless guy here gives a flying fart about how things might be FIVE YEARS FROM NOW, as guaranteed by a group that very clearly doesnt care about anything BUT the long term? No! He needs help RIGHT THE HELL NOW! He could be DEAD in five years! Wheras a group that genuinely cares would be launching out there RIGHT THE HELL NOW, working to take someone like that, get them off the streets, get them set up in a situation where they can finally get started towards something, and so on... "big change" would come second, AFTER those that are in big trouble RIGHT NOW. AS is known for utterly ignoring those that are in big trouble RIGHT NOW. That's one of the biggest and stupidest issues with them. You think autistics with very heavy problems care about a "cure" (which even you yourself say is probably just "effective treatment", which still wont work on 100% of people and thus has a decent chance of STILL being useless) that may appear 10 years down the line? They need help NOW. Every day, it gets worse. Every day, their chances of finding success in a job, in social situations, romance, life as a whole... gets less. But "oh, we cant focus on that, we're too busy science-ing over here!" says AS. So those autistics in that situation? Yep, out of luck. Sorry, guys, they just dont got time for you... you're back to having to try to figure things out on your own.

That really sound like a group that CARES to you?

AND, this goes into the "helping people deal with those that have it" bit. Because by helping the AUTISTICS directly, you're helping those that live with them as well. Hell, I'm living proof. I got help from those that actually understood that, yes, people do need help NOW, not 20 years later. My whole situation changed, after this happened (I dont just mean the money bit, but that's part of it). Everything didnt just get easier for me... it got easier for my family too. No longer does anyone have to constantly worry about what job I'll be getting or losing next, for instance, and that's a HUGE weight off of their shoulders. There used to be so much FIGHTING over that. Now? No arguements for EIGHT FREAKING YEARS. None.

But if it had been a group like AS that we'd been dealing with... I'd still be in the crappy job boat, and they'd be right there with me, probably sinking....

If you help out the autistic person that has the problems... and is thus the SOURCE of problems for the people that deal with them... you do, in fact, help the people that deal with them. But if you FOCUS on helping the people that deal with them instead of the autistic... you arent doing a damn thing in the long run. Not a damn thing. It's not just dumb, it's anti-logic.

And no, they dont have to "play up the bad side" to get people's attention on this sort of thing. When you do that, play on people's fears to "raise awareness", all you're doing is generating knowledge of the bad stuff ONLY. You know all of those patronizing jerks that say things like "Oh I'm so sorry your kid has autism, it must be so terrible for you!! !" or those that constantly think that EVERY autistic needs help or is going to cause trouble? Yeah. THOSE sorts are what happens when you raise awareness using fear. They're what happens when you use the methods that AS uses. That's what so much of their propaganda and videos shows to the world, and that's one of the biggest reasons why so many of us loathe them. Because they're actively adding to the problem.

And I know alot about marketing, advertising, stuff like that. The things that are done to get attention. You DONT need fear to get messages across.... unless you're bloody terrible at using any other method. There's so many other things they could do if they cared enough about the people they're supposed to be focused on... but they dont. So fear it is!

And hell, all of them donations arent even DOING much! They're just ignoring those that need help RIGHT THE HELL NOW, remember? So not only are they garnering attention in a bloody stupid way, they're then using the results in a bloody stupid way.

All in all, this leads to one, and only one, ultimate result: Nothing. Except for making it worse. And that's where all the hate, all the loathing comes from, because so many have noticed/spotted the damage that AS is doing. You might also notice, there ARE plenty of other groups out there, that DO manage good work, that do help people, and they're not using fear tactics or any of that crap. Because they actually know what they're doing, and actually care. But AS, the supposed big one, hasnt hardly managed a damn thing.

Effective. Very effective.


EDIT: And for about the bazillionth time, I'm clearly displaying the signs of getting overly fired up, which can happen to me with... any topic imaginable, so at this point I'll actually step out of the conversation. Otherwise anything further I say is going to devolve into a confusing mess. Or I'll just sound even more angry and unpleasant than I normally am.

OK.

So.. you're a give a man a fish kind of guy, and I'm a teach a man to fish kind of guy.

Agree to disagree, then. :beer:

As a socialist, I'm a "give the man his fish back" kind of guy.

TD, that is one of the very best one-line come backs I have seen on WP. Wish I had thought of it first! Can I borrow it sometime?

when I was diagnosed and learning about Asperger's in the early 2000's, it seemed we only had a reputation for being "nerds". Now, because of A$ and social stigma in general, people have started to think we're emotionless, robot-like serial killers or just sad, miserable individuals who will have no future or true happiness unless we're "cured". No, we are sad and miserable because we're allowed to be ourselves. we don't need a cure, we need ACCEPTANCE. There is nothing anyone can say that will make me think positively of them. I'm an adult so to A$ it's like I no longer exist, anyway.

Yes. From being lumped together as "nerds" we have now been demonised as enemies of society. Thanks Autism Speaks Crap.

Sure, I'd be honoured if you did.