If high functioning autistics can't speak for low functionin

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I just gave a conference presentation on this subject

No offense intended by this Aspie-Z, but if you look very closely at the way you worded one sentence in the above, you may see what I'm seeing. It looks to me like you are inadvertently speaking for ALL Autistics, even low functioning ones, by the way you worded this sentence:

"But surely, by that logic - their own logic - NTs have even less of a right to speak for us..."

Who is "us?"

By saying that NT's are speaking for low functioning Autistics, and then saying they are presumptuously speaking for "us," you are saying, in effect that "us" includes low functioning and high functioning Autistics. Yet organizations like Autism Speaks are clearly NOT speaking for high functioning Autistics. They don't speak for me. If they claimed to, I wouldn't accept it.

I'm NOT saying I agree with their message at all. I don't. I think their message spreads misinformation by never mentioning that high functioning Autistics even exist. You and I, and a most other users here are in total agreement on that issue.

What I'm saying though, is that when we say, "Autism Speaks," and other similar organizations, are exercising a hypocritical double standard by saying on the one hand, "High functioning Autistics cannot speak for low functioning Autistics," but then go on to speak for low functioning Autistics themselves, then turning around and saying they are speaking for US, you are grouping low functioning Autistics and High functioning Autistics together. "Us," the way you have used it, means both groups.

I question whether lumping all Autistics into the same group is even a valid way to view Autistics. Nobody really even knows for certain whether high functioning forms of Autism, and severe Autism are truly even related. There could be totally different causes for each. They could have the same cause. Nobody knows.

The question I have is this. Who does speak for those who can't speak for themselves? Who has that right? Anybody?

If we shouldn't speak for them, and NT's shouldn't speak for them, then who will? If we lump them into a group that includes us, saying "you don't speak for us, and should therefore be quite," isn't that being just as presumptuous as NT's speaking for them? Because now WE are speaking for them.

Please don't think I'm defending Autism Speaks and their tactics. I'm not. I've looked that them objectively, and not liked what I've seen at all.

But I'm looking too at the "Anti-Autism Speaks" movement and seeing a lot of the same mistakes being made (the money related issues aside).

The mistakes I'm seeing are that so much emotion and rhetoric is being spent on either discrediting the other side, or defending the position of one against the other, that the real issues are being lost on all involved.

These questions are not being answered, and answers are not even being sought by either side of this discussion:

Just what the hell IS Autism?

What CAUSES it?

Are low functioning Autism and high functioning Autism even the same thing? Do they have different causes?

What can be done about ANY of it?

Is it even POSSIBLE to cure it? Without an answer to that question, the discussion of whether or not to cure is moot. Maybe it can't be cured at all!

If there IS a cure for low functioning Autism, will that cure even WORK on high functioning Autistics? If the causes are not the same, probably not.


What it boils down to is the simple fact that we don't know enough about Autism. More needs to be known. Trowing around accusations doesn't get anything done. Can you say "Washington?"

If all we do is accuse those who don't do things the way we think they ought to be done, those who are doing whatever it is go on the defensive.

What is happening is that too many on both sides of the issue are not listening. Instead of focusing on trying to understand other people's points of view are, both sides seem to be either spending all their time defending their position, or accusing the other side of this, that and the other. Nothing is accomplished by that kind of behavior.

Diplomacy is not a strong suite of Autism. We, meaning both high functioning and low functioning Autistics, have a hard time imagining the points of view of others, but it doesn't mean it's impossible. Especially if we are high functioning though, if all we do is fling accusations (no matter how true they may be), all we are doing is giving THEM more reason to insist that we need to be cured, because, "See! They have no capacity to see the other side of this issue!"

YES, representatives of Autism Speaks are grossly overpaid. YES, they DO portray Autism as if it's a horrid thing that wrecks families, destroys marriages and lives. YES, those things are wrong.

But whenever a conversation starts off by accusing the other side of being wrong, all that is accomplished is to put the other side on the defensive. Nothing good ever comes of that!

Fact: Severe Autistics cannot speak for themselves.
Problem to be solved: Who should speak for them?

Fact: Autism is a spectrum, and there are more high functioning Autistics than low functioning.
Problem to be solved: How to reveal this to the general public

Is EITHER problem solved by saying to anyone, "You're doing it wrong!"?

Of course not!

If anyone doesn't think it would do any good to try and work with Autism Speaks, there is no law, social rule, or etiquette that says you have to work with them. The more productive thing to do, rather than accuse them of doing it wrong, is start talking to people about how it could be done better. Autism Speaks began with an idea. They talked about it. They came up with a plan, and they executed it.

If you believe the way they are going about things is the wrong way to do it, I'd call that a problem. You don't solve problems like this with mud slinging. You solve them by coming up with a different idea, talking about it, getting some help with it, and finding a way to execute it.

Is that an easy thing to do when the group that wants to change things is primarily made up of Autistics? Of course not! It would be far more difficult for Autistics to organize and execute a plan like that than it would for NT's. Our skills as organizers, and abilities to influence others are nowhere near that of NT's. It's part of our overall nature that we aren't very good at these things.

BUT, there are a LOT of us! Far more high functioning Autistics, I dare say, than low functioning Autistics. Instead of whining and complaining that "they" are doing it wrong, why don't WE get together and DO IT RIGHT?!

I'd much rather see that happen than hear more complaining. Complaining doesn't get US anywhere.

If enough people got together with this kind of attitude in mind, I would more than likely love to be part of it! Under one condition though. I would only be involved if a commitment were made NOT to make the same mistake we all see and know Autism Speaks is making. I would not be part of any plan that does not consider severe Autism. Period. That would be ignoring severe Autism the same way Autism Speaks ignores high functioning Autistics. I would not be part of any program that ignores any part of the spectrum.

If you, me, we, could come up with a plan that paints an accurate picture of Autism, from the beautiful to the downright hard to face aspects (I don't like the term ugly), I'd be more than happy to call myself a member of such a movement.

Anybody feel like actually DOING something about this? Anybody willing to quit pointing fingers, and take a good look at the three pointing back at yourself, take some responsibility and action?

Anybody?