Interview with Peter Bell of Autism Speaks

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I meant Mysty.

Well, that explains why it seemed so out of character for Kiley...

I think Mysty spoke well for how MOST parents would view it, although nothing can ever be said about "all." How a parent responds will also depend on the societal pressures at the time, and those are definitely but very slowly changing. It is really difficult to resist the idea that you are being a bad parent if you don't try the treatment of the day, and this community needs to understand that. You battle it with tact, not absolutes, not anger, and not by being 5 steps ahead of the current argument. There is, simply, a lot of education left to be done.

rossc, I think we all know the danger of which you speak, and it may come to that. But, it isn't there yet, which means that the "other" side can yet be educated and, hopefully, edged away from that idea.

First step is getting parents to stop fearing autism. A fear which, as we know, has been fed by Autism Speaks. But, maybe they can learn, too. We have to hope they can, since they are currently the biggest beast out there. Parents who are afraid seek pre-natal testing; parents without fear do not.

I know that there's less fear, and that it's harder to see someone as broken who can outright tell you they're not.

Everything you've said is correct in broad generalities, DW, but I don't like essentially being kicked out of a debate that's been central to my sense of self for many years for no better reason than that I'm capable of participating in said debate. I know firsthand why even considering a cure can do more harm than whatever you want to cure.

Mom would tell me about biomedical interventions, and keep harping on how there was no difference between Asperger's and autism, so the same things applied to both. When I got to the point where I could coherently argue that I like myself the way I am and don't feel broken, she switched to saying that I'm too high-functioning, but that LFAs' lives have no value until they can be cured. How can you say that after spending so long trashing my self-esteem, telling me my brain is broken?

I don't feel that it's fair that I suffered because of this philosophy, but am not allowed to debate against it. You say you speak for those who can't speak for themselves. I am at a disadvantage in a debate with you, because I only say what I know, or can reasonably guess.

After all, most NTs would make very bad trees. Too much standing still and photosynthesizing. Undeniably, all humans are utterly incapable of photosynthesizing or growing roots. We're also vulnerable to the elements, lacking, for intance, bark. And we can't contribute like trees can: birds can't nest in us, elephants can't eat our skin... What a terrible disability. Let's cure humanity. And if a human manages to learn to communicate to a tree that we're fine how we are, or can paint their skin brown and dye their hair green, the we can of course exclude them from commenting on the state of the rest of humanity, which is of course much more disabled.

DandelionFireworks, I most definitely do not want to kick you out of any debates and I most certainly do not claim to speak for anyone who can not speak for themselves.

Just in case there is any confusion.

I am not a part of Autism Speaks. My philosophies were formed in communities like this one. Just, as a parent, I can understand what drives other parents a bit. You can't get someone to shift their course unless you understand how they drive.

It's not being kicked out of the debate. It's being asked to understand the terms of the debate. It's being asked to understand that a label can refer to multiple related things, rather than one thing. It's being asked to understand there's a difference between children and adults. It's being asked to understand there's a difference between having social difficulties and not being able to do basic self care (feeding oneself, getting dressed, using the toilet). It's being asked to understand that there's a difference between missing the nuances of communication and not being able to communicate.

When you can understand that, when you can contribute your understanding as an autistic person without thinking it's all about you and people just like you, then you will be able to meaningfully contribute.

I don't mean you personally... not picking on you here. That's the generic "you". Meaning, anyone on the spectrum wanting to have their say and be listened to by the parents thinking in terms of a cure.

It's not enough to share your perspective. You have to listen to their side, understand their situation, and then share your perspective in a way that connects what you have to say to their reality. Yeah, that's a challenge for people on the spectrum. But it's necessary if you want to say something that's relevant to them and their situation.

If you want them to see that being able to take part in the debate doesn't mean your perspective is irrelevant, you need to show why you perspective is relevant, and that does require respecting the differences, including that not all autistics have the ability to communicate.

Hmmm. What I saw in the video was a parent who wants to be able to communicate with his son, and has been deceived into thinking that that requires a total removal of autism to do so. He's just ignorant?

Autism isn't a thing. It's a human label for a collection of traits. As such, the word has multiple meanings. What you mean when you say "autism" and what a parent means when they said they want a cure for their child's autism, those aren't the same thing. Even if you are talking about the same autistic person, that doesn't mean that what you mean by autism is the same as what the parent means.

You may be including things under "autism" that the parent is not including under autism when he talks about wanting a cure.

Maybe the only thing he's ignorant of is that other people use the word "autism" with a much wider scope than he is.

Another thought.

It's been said that other people don't have the right to speak for those with autism.

That includes us. You, reading this, any of you, do not have the right to speak for the children with autism. You do not have the right to speak for those kids whose parents think in terms of "cure".

That doesn't mean you don't have anything to contribute. But you speak for yourself and give your viewpoint.

Parents, on the other hand, while they shouldn't speak for their children, they can and do have the right and responsibility to make decisions for and about their child, for their child's well being, with the aim of helping the child to grow to be a happy and functional adult, as much as is possible.

No one can speak for anyone else. But we here can speak to what autism is, having a significantly greater degree of understanding of it than any NT will ever have.

But it really seems to me like your arguments are aimed telling us, in essence, "you can speak so what you say doesn't matter." It does. Someone has to say these things. Are they true of all autistics? No. Are they true in enough cases that their becoming the prevailing view would improve the world? Yes, absolutely.

I hope you carry this theory to its logical conclusion. I can't decry what happens to autistic children because I can't speak for others? Then let's take that to its logical conclusion. Neither you nor I get to speak to humanitarian crises. Only the victims of murder get to say it's bad. Etc.

Perhaps you need to reread what I wrote and actually listen. Hear what I'm actually saying, not what you think I'm saying.

Perhaps you need to reread what I wrote and actually listen. Hear what I'm actually saying, not what you think I'm saying.

Are you saying you didn't say you see the parent as being deceived into thinking a total removal of autism is required?

But, nice job of throwing my words back at me. (Seriously; not being sarcastic.)

http://www.genocidewatch.org/aboutgenoc ... ocide.html

Now this DOES sound rather radical and fearmongering BUT look at this....

Here grab some popcorn and have a look.

http://www.youtube.com/watch?v=yU2paLv1MGE

I hope you had a strong stomach.
Here is where they "staged" the whole clip.

http://www.autismspeaks.org/inthenews/a ... roject.php

Oh here is a second course

http://www.youtube.com/watch?v=FDMMwG7R ... re=related


Just in case you thought I was overstating the whole "distancing
themselves thing" or the legal disclaimers to the videos they launch
and promote...here we go

http://www.autismspeaks.org/docs/video/ ... elease.pdf


Now

1. CLASSIFICATION: All cultures have categories to distinguish people into “us and them” by ethnicity, race, religion, or nationality: German and Jew, Hutu and Tutsi.

2. SYMBOLIZATION: We give names or other symbols to the classifications. We name people “Jews” or “Gypsies”, or distinguish them by colors or dress; and apply the symbols to members of groups. Classification and symbolization are universally human and do not necessarily result in genocide unless they lead to the next stage, dehumanization.

3. DEHUMANIZATION: One group denies the humanity of the other group. Members of it are equated with animals, vermin, insects or diseases. Dehumanization overcomes the normal human revulsion against murder.

4. ORGANIZATION: Genocide is always organized, usually by the state, often using militias to provide deniability of state responsibility

5. POLARIZATION: Extremists drive the groups apart. Hate groups broadcast polarizing propaganda. Laws may forbid intermarriage or social interaction.

6. PREPARATION: Victims are identified and separated out because of their ethnic or religious identity. Death lists are drawn up. Members of victim groups are forced to wear identifying symbols. .

7. EXTERMINATION begins, and quickly becomes the mass killing legally called “genocide.” It is “extermination” to the killers because they do not believe their victims to be fully human. When it is sponsored by the state, the armed forces often work with militias to do the killing.

8. DENIAL is the eighth stage that always follows a genocide. It is among the surest indicators of further genocidal massacres. The perpetrators of genocide dig up the mass graves, burn the bodies, try to cover up the evidence and intimidate the witnesses. They deny that they committed any crimes, and often blame what happened on the victims. They block investigations of the crimes, and continue to govern until driven from power by force, when they flee into exile.

So DW it may be just a matter of ignorant parents needing to be informed....or...there is another alternative.

Maybe Autism Speaks has the ear of people in very high places. Did the rights get a commendation from the Pope? Maybe if we see the money shoveled to their organisation from BIG corporate organisations and more from government funding - effectively drying up other autism charities, we can presume them to be a little worrying if their image of Autism is damaging.
Do these videos show anything that does anything short of dehumaise Autistic people?
Does the genetic stockpiling lead you to question how it may be used by parties related to such dehumanising mindsets? Identification?
Are they state funded?
Do they have any people on the spectrum in their organisation, in positions of genuine power to help moderate things that are against the rights of Autistic people?
Are they extremist? Look at the videos again.

Are you frightened?

Are we a national, ethnic, racial, or religious group? No. Are their plans to perform actions (a) through (e)? Yes.

Indeed. That is our problem here too. We do not have the categorisation to hide behind AND that things are not overt. in a death of a thousand cuts it is not any one cut that is the lethal blow but the cumulative accumulation of them. It would be so easy to point out wholesale slaughter borne of heavy artillery or poison or machine gun fire BUT subtle repositioning of societal acceptance and censor and withdrawal of rights and so on. Gradually introducing genetic screening and and identifying the unborn as "possibly Autistic in origin" coupled with an understanding that this is faulty and not worthy of life and they will revel in their innovative research being able to reduce Autism from 1 in 150 births to maybe 1 in 10000. They will probably get commendations for it. I won't be cheering in the streets if it comes to pass.
Someone like me will not be born because of my genetic make-up or my son or many I have come to love. Because the assessment prior to birth will be that I am not worthy of life and that there is a chance that I will be too undesirable for society and of life.
Again look at the videos. They believe this. They see little value in people like me and they will not have the means to judge the potential. It will be warn the parents and let the chips fall where they may. Your child "may" be Autistic and MAY be unable to have a "normal" life.
Hell anyone who may carry the gene to have Autistic children may be seen under the same light inutero regardless of whether they will "actually" be Autistic.

Nice thought huh?

Ladies and gentleman this is Autism Speaks and this is Peter Bell and Geraldine Dawson and Andy Shih and the rest of the Autism Speaks cast whether they know or choose to acknowledge it. Slippery Slope to bad ends. The path to hell is paved with good intentions