What do you think of autism speaks now?

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Well it's not like Autism Speaks is an evil terrorist group who captures and experiments on us just for fun. They're not the Nazi's of the 21st century. They're just looking for a cure to those who are low functioning. Let me show you a quote two parents made to a comment I made on Facebook.

"For some people, ASD is just a difference. For others, it is absolutely, 100% a disability, without question. You might find social interactions to be a bit difficult to understand and participate in. Others are well into their teens, can't speak a single word, wear diapers, and aggress against themselves and others. Autism Speaks has provided resources, guidance, and above all else, some sense of control and hope to the family members of the latter group."

"Some can't talk. Can't even feed or dress themselves or use the bathroom. Have to wear protective gear because they're constantly self-harming. Who will never be able to live without 24/7 supervision.
Are we bad for wanting a cure for people who suffer like that?"



Most of us are high-functioning. Sure we may have trouble with social skills, anxiety, sensory overloads, self-initiating tasks, but you can eventually succeed if you really put forth the effort.

I find it hard to know what to make of Autism Speaks.

On the one hand there was their old "I am autism" promotional video which I didn't agree with at all, and there are the facts(?) that their directors pocket most of the donations and that they don't have any autistic directors. And so many ASDers speak out against them, I can't see how that would happen so much if there was no case against Autism Speaks. There's also this thing about them serving legal threats on people who upload parodies of that old video - that's pretty worrying too, if it's as simple as that.

On the other hand:

Some have correctly noted improvement in their PUBLIC presentations since the last decade. That probably happened because autism advocacy groups made it less acceptable to produce "I am Autism" type videos.

A big exception to that to that improvement occurred in 2013 with Suzanne Wright's "Call to Action",
https://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action

This is the letter that caused John Elder Robinson to resign. Mr. Robinson later made a post saying most working for them are good people trying to do the right thing and do have some understanding but the leadership is the problem.

Until the leadership changes either with new people or a change of heart the overall goals won't change. Based on their history I see little reason to trust them.

Whether motive is helping LFA children and their parents or eugenics only the Wright's know for sure. Regardless of motives lets look at potential effects of the cure intended or not. As I and others have stated it could mean anything from legal or financial discrimination against those who refuse a cure, aborting a large percentage of fetuses identified as autistic (the rate of abortions is 85% for downs syndrome fetuses so I am not discussion something without precedent) or the newest trend in research deflecting or intercepting Autism in very young children.

Based on my distrust of the Wright's, their power and money and the possible real world effects of a cure I believe this organization represents a POTENTIAL existential threat to Autistics as a group.

So there is no choice but to continue protest, distrust and verify. Based on some actual progress as small as it has been and massive progress made by other minorities that were where we are now there is no need to believe there is no hope for success.

Not all LFAs want to be cured either. Why is it that so many people think HFA = don't need cure and LFA = does need cure?

I knew a really sweet, quirky 10 year old boy who was nonverbal and wore diapers. Would I want him to have a reliable communication method and better self-care and coping skills? Sure. But if you were to cure his autism, he simply wouldn't be the same person - and I like who he is.

Autism Speaks has only done ONE good thing: made autism a household name as a condition.

Everything else the organization has done is harmful. The world is probably better off without the organization. I've been waiting for ASAN to take off.

I've been looking on the Web at what they say and what's said about them. Watched Suzanne Wright doing a speech - seemed like intense, emotional showmanship, compared with the British scientific community I'm used to. The main message in what I heard was a prophecy of doom in the near future if nothing's done about autistic people. I've not had time to look much further.

How likely is this prophecy of doom to be correct? I don't recall the statistics, but the general idea I got was one of a time bomb, "in x years, y thousand adolescents with autism will be plunged into the job market." How can this be so? We've always had autism in the gene pool, and until recently it was never diagnosed, yet the world didn't end. Diagnosis and aftercare aren't good enough, but they're not declining. Can anybody see any reason why this "bomb" would suddenly burst? To me, there's a kind of biblical flavour to the idea.

Charity leaders are frequently narrowly-focussed on fundraising - what else can they do in a market economy? It's not surprising if their messages are over the top, that's how advertising works. We're basically told that we have to fund them to kill the evil demon of autism which is about to smite us with a terrifying pestilence. That's a powerful motivator if they can get you to feel it. Unfortunately, autism is a spectrum thing, so even if their message was correct for full-blown autism, it would apply even less to us. We don't want to be medicalised, labelled as having a creepy disease, we don't want people to wish we'd never been born. And their leadership seems out of touch with that, which isn't surprising given that we're not represented.

From their point of view, it's difficult. If they qualify their words, they dilute the emotive power of their fundraising messages, and they can only address the brain, not the heart. Luckily, if they don't, they get criticised, it's easy to find criticisms of them on the Web, and although that doesn't always reach the non-critical thinkers (the only people their messages could work on), I think it worries the management. The big donators are more likely to be critical thinkers.

I have some sympathy with their idea that the caregivers of autistic people often have a very hard time indeed. Some caregivers burn themselves out, it can be a nightmare fighting the bureaucracy to try and secure support for an autistic person. We often have to be advocated for, and the state doesn't like spending public funds, so the family gets the runaround. A parent can become indispensible to an autistic person, losing their own life in the process, and what happens when the parent dies? Obviously, for a relatively mild Aspie, the difficulty is rather less, but I know of one parent who is working like mad and approaching burnout getting their Aspie child on her feet and protected from the cruel world. There is no diagnosis yet, apart from one of "it's just a bit of an anxiety problem, she'll grow out of it," but now there's more evidence, the diagnosticians suspect ASD and the symptoms do seem to fit her well. I'll take this back if she turns out to have something else.

I was relieved to read that the founders don't get paid. I hope that's true in reality as well as on paper.

What do I think of Autism Speaks now?

I think they are even more toxic and dangerous and corrupt than I first thought they were. I think they plan to take over perceptions of autism so that they run and "manage" those perceptions, and that they plant stuff all over the place using the false cloaks of altruism, science, whatever suits their central goals. I think they know how to use hidden persuaders and are slick in their manipulation of public perception. I think they are immensely dangerous to the well-being of every person on the ASD spectrum, they are power crazy and at their head are two extreme narcissists who want the power and glory that false "saviours" always do. I can't express in any clear way how much I detest this organisation, its misuse of power and funds, everything it stands for and everything it does. The Leper speech at the Vatican by Suzanne Wright was the last straw for me, in giving them even a tiny benefit of the doubt. I hope they are hoist on their own petard and exposed totally for what they really are, and what they are really about. They prey on the naive in very manipulative ways. They are repulsive to me.

I also think that Fnord's analogy with Scientology has substance - Autism Speaks are a cult, and recruit prospects to indoctrinate with their cult beliefs, while milking them for large amounts of money. And like all these cults, they have to have designated enemies to demonise - in Scientology's case, it is "suppressive people". In Autism Speaks case, it is us. We are targets to them, and their hypocrisy in presenting us as their "cause to help" is utterly sickening. (B19 has to go and vomit now).