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Yeah. I've been concerned about her absence. If anyone knows anything ...

Between this and a potential role in Autism Speaks, you are positioned to start shifting the paradigm from "fix what's broken" to "cross the communication gap". Godspeed.

I would suggest commenting on her blog at Ballaexistenz maybe. It seems people close to her read the blog, and might be more likely to respond.

Let's get back to reality. Autism Speaks have over $60 million a year to play with, and yet they "cannot understand" why exclusion from consultation and decision-making about our own lives makes us angry? That having our voices usurped by people who don't even know us and will not listen to us p*sses us off. In fact, they cannot even get their head round the notion that the best way to find out why we are angry is to actually ASK US?

It is not rocket science, if they really were that stupid, then they shouldn't have that much money to play with at all, under any circumstances, end of.



But we do not "speak two different languages" at all. Our communication difficulties are a two way thing, we have difficulties with communicating what we need to say *AND* with understanding the communication of others...whether they are NT or Autistic...the only advantage in communication with another autistic is that we tend to make more appropriate adjustments and accommodations for the communication deficit.

You cannot seriously believe that Autistics can understand each other about this and a $60 a year corporation cannot? That does not even make rational sense.

I have seen the PR and propaganda ploys before...somebody appears out of nowhere and tells everyone how wonderful the organisation has been to them, how impressed they are, etc and so forth...this person (or persons) may be newly diagnosed and naive, or they may be a "shill" chosen and briefed in advance, they may even be a little of both. Whichever way, the story ends the same...

Scratch the surface, wait a while, and the whole things turns out to be an empty sham. A few people get suckered in to work against their own best interests...some figure it out, drop out and tear themselves up trying to live with it, others start to figure it out, recognise they cannot handle it and go into denial, perhaps reinforcing that with renewed zeal and evangelism...

Meanwhile the organisation goes on burying our lives and our futures, for money and influence, as before.

But we are not inanimate objects or inert gases...we are people. Every time one of these ploys play out, a few more of us see it for what it is, and we get stronger, and more sure of ourselves. More than that, we get a little less afraid.

There is a man of colour in the White House, when, even in the 70s, a significant proportion of Senators and Congressmen were openly affiliated to the Klan
There is a gay man as front runner for presidency in Ireland where, until 18 years ago, homosexuality was a criminal offence.

WE WILL PREVAIL IN THE END.

I promise.

One day, perhaps not in my lifetime, but one day.

The amount of resistance Autism Speaks has met IS starting to have an effect. You are absolutely right - they don't know us. And, perhaps, their mistaken NT notion of 'we're just trying to help' did blind them. No doubt, they have been VERY wrong in the past. They haven't listened to the criticism. Their past behavoir warrants vigilance to their future behavior.. .but that doesn't mean that it cannot change. The charity was founded with some very core beliefs about autism - beliefs supported and reinforced by a vast medical community. The medical community is ALSO wrong. The experts they rely upon for their information are equally ignorant. Top to bottom, thinking needs to change.

I think it can change. I think people need to keep speaking and protesting and bringing attention to it. But I also think someone needs to speak to them, on their level, in their language and bring about an intellectual change of thinking about autism. They are not stupid and, in a way it IS rocket science. If you fundamentally KNOW the earth is flat, it will be a long, hard and much resisted road to convicing them that the earth is round. It challenges everything they know. It requires a vast number of people to admit that they are wrong. That much of what they believe is wrong. If you think that is an easy task, I would suggest that you are gravely mistaken.

Telling them they are evil is as good as sticking your tongue out at them on the playground in kindergarten.



How do you make someone who does not suffer from sensory overloads understand what they feel like? How do you make someone who doesn't experience the mental energy drains that lead to meltdowns how that process works? You can use words - be as descriptive as humanly possible - but without the physical ability to experience these things they cannot truly understand what autism is like as a mental process. It is a different language because the autistic experience is outside their ability to comprehend on a certain level. We need to find a new way to explain it - new analogies, new methods, new approaches - because it is quite obvious that plain old words are not effective. They don't get it no matter how plainly it is said. We do need to find a new language, of sorts, to bridge this gap in understanding... in comprehension.

As it stands, most of the medical community doesn't even know that they lack understanding. That alone is an incredibly difficult position to begin from.



You are absolutely right. Fear is pervasive and it prevents forward motion. What would you rather have? Autism Speaks dissolved tomorrow or that $60 million charity working towards teaching true understanding and researching more effective treatments and interventions for autism? Would you rather have all that income generating power be put to rest or put to work on your behalf? I don't want them to go away. I want them to understand and use their power and influence to make a real difference. I want them to change.

I think you are also right in that we will prevail and - I'll go out on a limb here - I'm betting you may just see that change in your lifetime. It think it is already beginning.

You mean wheeling dealing, politic and deceit, which is, just about all that goes on behind the scenes, and the minute you deviate from that towards altruism, you are no longer speaking their language and they are not going to hear you.

It's a walk in the park for an Autistic to talk their way into a stratospheric salary and a position as the "Autism Speaks" official appointed leader of the Aspies, or somesuch, compared to trying to get any of them to give a flying f*ck about whether they are hurting Autistic people.



It's not an easy task, that is why it is ridiculous to dissipate time, energy and resources playing machiavellian games we are ill equipped to win in the political catacombs of the autism industry, when we could be achieving something instead by bypassing them to make a more direct approach to the the world at large, who, if nothing else, at least do not generally have an specifically antagonistic agenda.



I agree, if for no other reason than they are probably already far more aware of the true extent of that than we are...so my approach tends to be more like this;
[youtube]http://www.youtube.com/watch?v=ff_bL-2koP8[/youtube]

If nothing else, it tends to decrease their expectations in terms of the extent of our gullability, and in so doing force a little true "Autism Awareness".




What, in the name of all does that have to do with their failure to understand that we are autonomous human being, with the same right to self definition as anyone else, and that having our futures discussed and decided behind our backs, by and organisation that claim to speak for us, with no mandate from us?

Let me clue you in; there are a lot of FAR more generic, NT applicable reasons for objecting to all of that, reasons they already understand perfectly well from their own experience of life.



A significant proportion of them are fully aware that they do not give a toss as long as the money, laurels and kudos keep rolling in though.



Yes, and I would be prepared to give my life if I were certain that by so doing I could bring it about, because Autism Speaks "working towards teaching true understanding and researching more effective treatments and interventions for autism?" would wind up bearing an uncanny resemblance to http://en.wikipedia.org/wiki/Bedazzled_(1967_film) but being played out with our lives and our futures for decades...



So do I, see above for why that keeps me awake at nights.

We do not need "Autism Speaks" to have self definition and autonomy, so why play along with them at all? As far as research is concerned all they do is divert it towards gain, and thereby delay true understanding and effective interventions. It will take us a very long time to get those things, but we will still get them a lot quicker without volunteering to be hogtied by "Autism Speaks".

I think It would be a sad thing for you to give up your life to dissolve an organization. I think you are giving Autism Speaks more credit than they deserve. The thousands of people that support Autism Speaks are the back bone of the organization. If Autism Speaks called it quits tomomorrow a similar organization would quickly replace it to meet the same mission seen as a vital one by the backbone of support they have. Our own government is in line with the mission to cure, treat, and research the causes for Autism.

That's a done deal. The most we can hope to do is to have input that affects the direction of the mission supported by thousands of people and the government. Without getting involved in those efforts in a positive, effective way, there is no hope to change what a person fears. That is what the developer of this website is doing and has commented that he hopes to help the organization move in a positive direction. That is also what the Autistic Author that has joined the organization is doing. It's not possible to create positive change without positive input.

Negative comments with no useful, specific positive alternatives, to the organization, are completely useless in creating the change one desires. The battle is not about organizations it is about useful actions that make life better for autistic people. If one chooses not to play a part in creating positive change that is their perogative.

Negative comments for the sake of negative comments doesn't solve any problems. It is like a black hole that sucks the life out of anything to be gained from an interaction.

It is the people like the owner of this website and the autistic author that are in a position to create positive change; A person doesn't have to support Autism Speaks to support them.

Positive changes are already occuring; the voice of people that represent Autism Speaks is evident on the videos, for people for to listen to, if they care to, on this website. The voice of Autistic people are also being listened to with the Autism Speaks organization. If no one was willing to bridge the gap, we wouldn't have the efforts we have now, to create positive change.

Not anywhere near as sad as having everything that could make life worth living drained from me by that same organisation to no useful purpose at all.




Very probably, but if "Autism Speaks" called it quits because they were disgraced and exposed by the very people they raked in so much money to "help and protect" the similar organisation would arise tempered by a great deal more respect for the wishes and feelings of Autistic people.



Now THAT is what I would call negative thinking on a mammoth scale. I am quite sure it was similar thinking that sustained the Rise of the Nazi party in Germany.

OF COURSE we are capable of FAR more than craving whatever crumbs those who exploit us choose to drop from the table to keep us pliant.




I am sorry, I find that statement rather creepy, perhaps because of the memories it triggers of "See how the other child is being good and enjoying this" from my childhood in a very different disturbing context.



Now there is a semantic fallacy built from invalid associations if ever I saw one...predicated on the false assumption that the only way to create positive change is to comply with "Autism Speaks" in creating negative change. There are plenty of ways to create positive change WITHOUT compliance with "Autism Speaks", nor even association with them. All of which tend to be more effective in direct proportion to how far away you keep them from interference from "Autism Speaks"



So why make a negative statement like this:



What were you seeking to suck the life out of in so doing?

...and hey, it really isn't my fault that there is nothing positive, and truthful, I can say about "Autism Speaks" now is it?



(Ah doublespeak...let's see what I can do with that...gimme a minute here.)

Absolutely true, however, a person probably DOES have to support the author (whoever that may be) and the owner of this website in supporting "Autism Speaks" to support them in supporting "Autism Speaks" don't they?

...and I do not.



The voice of Autistic people speaking for themselves independently of, and against "Autism Speaks" are creating positive change on a far faster track though...there is absolutely no need for anyone to waste time and energy on "bridging the gap", unless of course they want a stratospheric salary and a title like "Leader of the Aspies" in return for singing the preaises of "Autism Speaks" endorsing them on command, and leading their own kind like lambs to the slaughter...in which case, even I cannot see another way.

There are very intelligent, reasonable people trying to make positive change to help people with Autism. And, some of those people have Autism.

It is more effective to fight something, one doesn't agree with, with intelligence instead of anger and fear. When anger or fear overrides reason not much is accomplished. Everyone needs a purpose; regardless of what the outcome is, or the driving force.

Last edited by aghogday on 15 May 2011, 6:35 pm, edited 1 time in total.

Whereas I just happen to be a total numbskull who deals with intelligent, reasonable people who are trying, and succeeding in making positive change to help people with Autism as far away from Autism speaks as possible.



(Does that statement having any real meaning apart from being a variation on:
"Resistance is pointless, you will be assimilated"?)

I am neither angry, nor afraid (...nauseated from time to time though), and I have plenty of purpose, though I am a LOT more choosy about the "outcome" and the "driving force" than you seem to think a person should be.

PS. Your arguments have convinced me of one thing, that the time has come when "Autism Speaks" needs Autistics a very great deal more than Autistics will ever need "Autism Speaks".

Yes, and some have been courageous enough to bridge that gap with reasonable and intelligent input. I know for sure the owner of this site has and the Autistic Author (John Robison) that recently joined their scientific advisory board.

Fortunately, this website is one where both sides of the view are allowed to be expressed freely. This website, in itself, is meant as a bridge for all points of view: NT, Asperger, other ASD's and families of people with ASD's. Opinions are freely expressed without too much limit.

It wouldn't be possible to have a conversation like this on any other advocacy site, that I am aware of. I enjoy listening to your input, and don't doubt there are some from other organizations that listen in, that are interested in finding ways to bridge the divide.

Thanks for taking the time to become a member, to express your view here on this topic. I never realized ABA was even an issue with Autism Speaks until you came along, and have learned something new from your input. I sincerely, appreciate it.

I actually became a member long before you did, for very different reasons, but thank you for your retrospective welcome.

As for the rest, as "Autism Speaks" needs Autistics far more now than Autistics will ever need "Autism Speaks", and only ever slows down our progress towards autonomy as individuals or as a lobby, why on earth would any of us have any reason to waste our limited time and energy bridging any gaps at all?

We would have to be pretty foolish to fall for that one. But nice try.

My mistake there, thanks for taking the time to continue the conversation, though, anyway.

I think that some people truly want to see changes in autism speaks to benefit more people on the spectrum and that is why they are making the effort. There are many that hold a complaint that Autism Speaks won't hire any Autistic people; what you are suggesting is that it is not worth the time of autistic people to participate in the organization.

So, I guess that the people that are bridging the gap are responding to the input of so many that autistics should be involved in the organization. How else will that happen?

I don't think I have heard one person argue that more autistic people should not be employed in the organization. Is that a point you don't agree with?

Is it possible that the reason that more autistic people haven't worked in the organization up until now, is simply because they weren't interested? The organization certainly can't make anyone with autism work for them.

People here were vocally upset when the owner of this site gained a partnership with the organization that allowed more awareness of higher functioning Autism. People were complaining that there was no autistic input in the organization; he made the improvement, yet people still expressed dissatisfaction that it was an action against autistic needs rather than for them.

It is more a situation there, in my opinion, that someone else is supporting the opposing football team rather than the same autistics that are being served here in an opportunity to gain support.

Maybe I'm too logical, but it doesn't make a whole lot of logical sense to me to oppose someone wanting to work with Autism Speaks, yet complain that they hire no one with Autism.

If people truly want a change someone somewhere has to make the real effort to make it happen. That is what the owner of this site along with John Robison are doing. And it seems that other people with Autism are stepping up to the plate also.

Okay, so please enlighten all of us with your vast and superior knowledge. What is it that you are doing that is affecting such change and how do we get involved? I would like to consider all options at this point. How do you propose my skills could best be used?

About your PS: I thought you were saying that they do not and will not hire or listen to Autistics? Which one is it? Confused....