If high functioning autistics can't speak for low functionin

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True enough.

Thing is, though, a group can't simply say "talk to each person within this category". Groups of people need fair representation, and the best way to do that is to elect an organisation that represents the majority of said group. Autism Speaks does not fit that description at all, yet they act as if they do, and defend their horrible message with false logic as I demonstrated in the OP. ASAN, run by Ari, does represent the views of most of us, so they're clearly more apt to do it than Autism Speaks, yet Autism Speaks is trying to discredit this other autism organisation because the person at the top of it actually has autism

An organization made up of people on the spectrum are far more qualified to speak for the Autistic community then an organization made up of NT people, that's for sure.

I have to wonder why they are trying to discredit the other organization. Do they think 'no true autistic person is capable of speaking for themselves'? I don't know... I've just about given up my life long quest to understand typical people. :-\

Exactly, and that was my original point.

The reason for trying to discredit the ASAN is obvious... Money. They make loads of money and get big fat salaries from their "work", and they wouldn't want to give those up.

So they don't actually care about those on the spectrum. They just don't want to shut their traps. Got it.

Precisely. I mean, have you heard their marketing stuff? "Autism is an evil demon that's eating our children" is pretty much the gist of it. But they made over $60,000,000 last year from that crap.

I have heard it, and it made me roll my eyes.

This is why I think teaching communication skills is so important. All parents start out speaking for their children initially. They say, "the baby is hungry" or "the loud noises are bothering the baby" etc. But most toddlers learn to talk efficiently and start speaking for themselves by age 2 (the infamous age when many toddlers start saying "no" to so many things- that's speaking for themselves). But when people have impaired communication, their parents wind up speaking for them for quite a bit longer. It eventually becomes a habit. It's a habit that is so hard to break- especially when you have a child (who is increasingly older and older and then an adult) who doesn't step in and say "no" the way 99% of toddlers do to establish that they will be speaking for themselves from now on.

That's why I think communication should be therapy goal #1. Speech therapy for the verbal child. Typing, assissted communication, PECS board, any other sort of communication technology for a non-verbal child. Sign language. Children who aren't using spoken or typed words or icons or gestural sign language are still trying to communicate through actions.I say "trying" because they probably aren't succeeding at communicating unless somebody observes them very carefully and over a long period of time to figure out what the different actions mean and then compiling a dictionary specific to that person and trying to substitute a different action if any of the attempts at communication are injurious.

Everybody needs to communicate (ok, maybe there is somebody out there who doesn't, but very nearly everybody does). There needs to be a heavy therapeutic focus on ways for communicationally disabled people to communicate because that is the only way it can even be possible for them to speak for themselves.

My daughter got speech therapy to move her from echolalia to where she is now. I have no idea how much of her current communication skills are due to therapy and how much to natural development. But it seemed worth it. Now she speaks for herself in person and how! I still speak for (or about) her on WP because her reading and typing skills are still embryonic and she does not have any interest in making posts to other children on Kid's Crater (I read her some and she didn't care about what they were talking about). But her future in being able to speak for herself does seem pretty good. She's verbal so she has the advantage of having her literal voice heard.

But what of children (and then the adults they become) who are non-verbal? Anbuend has written at length about that. I'm still trying to wrap my head around her description of temporary forays into language use (or temporary forays out of it, whichever way makes most sense). The paintings help. In any case, it seems that people who are non-verbal more often than not need to get the skills and technology for communication as therapeutic/educational goal #1. Verbal speech is privileged so verbal people have that advantage, but echolalia will be discounted so speech therapy is needed to make verbal speech into more effective communication. Typed communication is also privileged so anybody who can type should be taught, if at all possible. Then there are PECS boards, assissted communication, sign language, gestures and actions unique to an individual, Iphone apps, and hopefully other things still in development. Everybody should be able to speak for themselves but to make that possible, communication skills needs to be therapeutic/educational goal#1

i dont see autism speaks as being the giant evil corporation trying to squash the little guy autistic. a lot of people disagree with some of their methods, but they have still accomplished some good things. things like providing scholarships for kids to attend camps. their video glossary series can help parents recognize what traits are and arent indicative of asd. even their public service messages, they may portray a negative image of autism, but i bet there are a lot of children now diagnosed and getting help that wouldnt have gotten it without their parents seeing those.

advocacy is not so black and white. no organization is ever going to be able to 100% advocate for all of a group, because groups are made up of individuals who each have their own needs. thats why there is seldom just one advocacy group for any cause.

if you dont like how a group advocates, the best thing to do is start your own or join a "rival" group.

i honestly find it insulting to hear people saying that NT parents cant advocate for their autistic children, or that other autistics are "more qualified" to speak for them. we may not live life with autism, but we do live with autism every single day. and while my son may have autism, he isnt autism. it may affect various parts of his life, but thats not all that he is. he is part me, too. he shares traits and personality with me as well, and no group of strangers who has never spent even a moment in his presence are qualified to decide ANYTHING about his life.

dont assume just because you are autistic you are any more able to advocate for an individual that you dont know better than those who live with them. that would be arrogance, and as someone else said, it blinds those with it into thinking anyone that opposes them are stupid and not worth their time.

Obviously parents and care takers are more qualified to speak for the individual on the spectrum because they actually know the person. That is not at all what we were saying, and I'm sorry you got that impression.

What I was saying is that when you are speaking of an organization that proclaims to speak for a large population, you need to take into consideration the organization itself and who it's made up of. Autism Speaks is made up of NT adults that are trying to discredit anyone on the spectrum trying to speak for themselves.

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?

Alternative problem to be solved; How to change that fact so that they will be able to speak for themselves.

It's being taken as a given (a fact) that if severe autistics can't speak for themselves right this minute, then there is no possibility of them ever speaking for themselves. But what if this problem is one that could be solved with communicartion therapy and/or technology? Haven't we all heard stories about non-verbal people (usually teens) who happen upon a keyboard and their flabbergasted parents realize that they can communicate? These things shouldn't be left to chance. If communication by any means possible was made therapeutic and educational goal #1, perhaps severe autistics could speak for themselves.

Maybe the problem that really should be tackled isn't who is the best spokesperson but rather how to make spokespersons obsolete with ever better communication therapy and technology.

And that problem is being tackled by quite a few innovative researchers, yet not too many people are aware of that fact. So...

Maybe another problem is how to make that knowledge more widespread. And that does require some organized effort in the way of a "spokes person."

I get what you're saying, but I think what you really mean is for Autistics to be the spokes people for Autistics.

See, the real problem behind this "Autism Speaks Sucks" vs. "HF Autistics shouldn't speak for LF Autisics" is twofold, and, as I see it, the fault of both sides. I know a few folks with extremely low functioning Autistic children. I know what their life is like. I have AS, and all three of my boys are on the spectrum. My life is hell, but it is nowhere near the hell that those people go through, and each of them has only ONE Autistic kid. The fact is, quite a few of them are angry at those of us who seem to them to be painting Pollyanna type picture of Autism (at least in comparison to what they see as the reality). To them, videos like "I am Autism" are reality! To us, it's not the whole truth.

And it is true that the overall message of Autism Speaks does not paint a complete and accurate picture of the spectrum of Autism.

Somebody really should do something about it. If they won't, who will?

Are any of US willing to do it? Are any of US willing to actually take some action and do what they are not doing?

Are any of US willing to accept that they will do, quit worrying about it, and do ourselves what we feel they ought to be doing?

It's easy to point fingers. It's easy to accuse others of not doing what we think they ought to be doing, but it doesn't accomplish anything.

Action accomplishes things. Whining and complaining about it on a forum doesn't change anything. Topics like this go back as far as this forum is old, yet nothing has changed.

In the following question, by YOU, I mean everyone reading this post.

What are YOU willing to do?

The posh term for this issue is really one of Advocacy.

The united states tend to have quite a strong believe that the only true form of advocacy is self advocacy. I.e. the individual speaking for themselves. Whereas here in the UK we tend to be more supportive of advocates to help represent the vulnerable and disadvantaged in both mental health and learning disability.

It's no suprise to see the americains on this board express those kind of opinions its quite a strong believe built into the culture and i guess theres no real right or wrong answer when it comes to advocacy. I imagine the americains would hate the logo of my former employee "The voice of learning disability" being a charity which was formed by parents of children with learning disabilities.

Bare in mind our own version of autism speaks the national autistic society was founded by parents of autistic children in the 1950/60's. Parents at the end of the day are the primary carers for such children and they do have to deal with the day to day pragmatism of what is a rather sh***y situation if you are worried about what will happen to your children once you are incapable of looking after them or they are never able to achieve independent living. WHile they have opened up the organsation more to people with ASD's some of whom do sit on the council of the organisation it will never be a representative organisation because fundamentally it is a parent lead organisation.

The NAS has its own irrational methods and practices of its own to answer for. But I do find the kind of arguments put forward by autism speaks to be ones that demonstrate a seriously perversive mental state and an immensly ignorant and naive understanding of their childrens conditions based on psude-science, dellusional fantasy and mythology of their own creation.

The interview with the representive from Autism speaks linked on this site is quite an insight into the kind of mindset that exists in the parents who make up this organisation. To me it demonstrates a fundamental failure of americain society to understand the entire expanse of disability, not just autism. A lot of what these parents focus on is not the actual autistic behaviour of their children. They seem to neglect the medical fact that a person with "low functioning" autism is not some kind of acursed bad autism seperate from aspergers and HFA. Fundamentally speaking their children suffer from learning disabilities and they appear to not recognise this part of their childrens identity and focus in a psychologically unhealthy manor on a secondary characteristic of their childrens behaviour, as if curing that will somehow stop their child being mentally handicapped.

Autism, as of itself, is not a learning disability. All that seperates a person with aspergers and a person with "low functioning" autism is that one of you does not have brain damage. There is not a real medical terminology that underpins this word use of "function" and you will find professionals who will argue against the use of seperate terms. Even Lorna Wing who invented the term Aspergers Syndrome has written in a 2005 article that she regrets creating an impression that aspergers is a seperate condition in the eyes of the public and general trainned health professionals.

Technically speaking as a nurse in learning disability I technically can act as an advocate on behalf of those under my care. But the role of my profession is not to substitute someones communication it is to build someone up to be able to voice their opinion. The greatest barrier such people have to speaking for themselves is actually the kind of people who support them, parents or carers in a private or state funded social care setting. The astounding degree of ignorance some so called support workers demonstrate towards those they care for, particularly if they are unable to verbally communicate, never ceases to amaze me. There is nothing worse then someone who does not listen and then believe they can construct a fantasy character for the person they are supporting. To elaborate the point further I think this lass from you tube pretty much sums up these kind of situations. It is a truly dehumanising way of treating people and it is done with absolutely genuine positive intentions but executed with total ignorance...





[youtube]http://www.youtube.com/watch?v=4c5_3wqZ3Lk[/youtube]

Even then, I think that people who can't "speak for themselves" can still communicate in other ways. I guess you're including AAC-assisted speech, sign, and other symbolic communication in your definition of "speak for themselves"; but even the autistics who use absolutely no symbolic communication (probably less than five percent of the spectrum, at least when they are teens or older) still communicate in other ways. When, for example, you give a person a banana, and he takes one bite, spits it out, puts the banana down, and walks away, you can read pretty clearly that he's communicating the idea, "I don't want to eat this banana." Why refuse to let people decide things for themselves just because they can't speak? Sure, maybe abstract ideas can't be read from a person's actions; but there's an awful lot they can tell you, and lots of so-called professionals label it all "problem behavior" and think there's nothing to see.

If Neurodiversity gets its way, then everybody will get to speak for himself--including nonverbal people--because everybody will be listened to when they do communicate.

is there a video of this available to the public?

You make a very good point.

The point I tried to make in that post was that, if us high functioning autistic people are somehow unqualified to send out a message about autism, NTs are even less qualified. I was pointing out a major flaw in the false logic popular among supporters of organisations such as Autism Speaks.

In fact, you could take it even further and let low functioning autistics just speak for themselves. Why the hell not, anyway? Some are able to communicate, if not vocally then with computers.

As for another organisation to counter them, actually doing something about it, that already exists in the form of the Autism Self Advocacy Network. They're doing quite well recently, but unfortunately they aren't nearly as huge as Autism Speaks.