Interview with Peter Bell of Autism Speaks

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The emphasis on "cure" is troubling to those of us who know, as most clinical research is showing, that autism is primarily genetic. It is impossible to cure Autism without ending up with an entirely different person. When a parent wants a "cure" it seems that what they want is for this damaged person to be replaced with the typical child they wanted in the first place. Other conditions may be genetic but do no determine neurological functioning as Autism does.
So many of the characteristics of Autism have both positive and negative consequences. The same over-sensitivity to visual stimuli that makes going into a new store or restaurant very overwhelming can contribute to amazing artwork. The same honesty that gets one into trouble in a social situation can also lead to respect.

The purpose of this video is to talk about the use of the word "cure". That's the point of it, and the reason for the emphasis on "cure" in the video. And, given that, it really didn't at all seem to emphasize the idea of cure, but, rather, the idea of helping one's child to grow up, to develop, to learn the various life skills that typical children learn.

I think he meant more the potential accompanying issues that come with it, like maybe how some autists need a special diet free of gluten or casein. I didn't even think that he could be calling autism itself a health problem.

.... I gotta say, I thought that I was going to close the whole browser if he said "I think we should celebrate all the differences!" one more time. Too clichéd for me.

Right now, everything in our community is an evolution. What I heard was a man willing to work on crossing some of the divide. OK, he doesn't speak our language and he doesn't see everything the way we do here, but does that make his perspective 100% wrong? Not really. He seems to be searching for that right balance still, in his own mind. There is a process involved, when it comes to a parent having to make decisions for a child, and he is in that process. I respect the fact that he is asking and seeking and clearly doing some listening, even if he may not see things exactly the way I'd like him to.

Autism Speaks is the largest voice out there and the more they can understand and include our perspective, the better. Are they where I'd ideally like them to be? No. But do they seem to be evolving? Actually, yes. Am I with them at this point? No. Might that change in the future? Possibly.

Things are different when you are a parent. You can't take away your own experiences and hopes and dreams and step 100% into your child's shoes, no matter how much you would like to. We certainly try, but parents are the creatures of their own life experiences, those before and those after the birth of a child. Fortunately, we never stop changing and growing and evolving, so the odds are good we can come closer to understanding what our kids really need as times go on.

To some extent, a person must be able to form relationships just to get by in this world. NT's are well aware of how important the relationship aspect is to just getting one's due. Want a job? You need to build a relationship in the interview. Want to advance in that job? You need to be build relationships with your co-workers. Want to chuck all that and be self-employed? You need to build relationships with clients or customers. In order to make a living, which is essential to living independently, there is pretty much no getting around the "build a relationship" part. Some fields are more forgiving than others, and those on the spectrum will gravitate towards those fields, but there remains some sort of link that needs to be formed. As a parent, you want your child to be able to fly away and live on his own. To do that, the ability to build and sustain some version of relationships is required.

Do NT parents also have trouble believing life can be happy without meaningful personal relationships? That, too. Study after study has concluded that friends are the key to happiness. Even my AS son, who doesn't need a large social circle, needs SOMETHING in the way of personal relationships, and he has suffered from the loss of a friendship this year. That has been really difficult to watch. It isn't me assuming that; he has expressed it quite clearly. His interest in role playing games requires someone to play with. All he wants is that someone. But it takes SOME relationship building skill to find that.

Yes, there are times when an NT parent may overly emphasize the concept. But I've been watching and reading and I see very few on this forum who truly get by and are happy without ANY relationship building. I don't think a parent like Mr. Bell hopes for his son to join the party circuit; I think it's more that he knows that with no one at all, on any level, life is really difficult. Even for someone on the spectrum who generally prefers being alone. Perhaps he still wants more for his son that his son wants for himself; I do kind of get that from the man; but I don't think he is talking about the full NT life; given that his son doesn't communicate well, he admits he really can't know what the child yearns for.

Peter's logic/language did leave a little to be desired, but in general I thought that was a cogent, sincere defense of his position.

The truth of the matter is, autism is generally a devastating, awful thing. If you can't wrap your head around that... I mean, come on. Reality check, people.

If you are so high-functioning that you have the ability to formulate and actually express an anti-cure attitude and participate in a forum like this, you should probably refrain from judging the "curebie" attitude of someone whose child is a glorified vegetable, and just be thankful that you're not any more autistic than you are.

- A realistic, officially diagnosed Aspie

I agree that the lower end of the spectrum definitely deserves a "cure" more than the higher end, but seriously, when is it going to happen? There was some study posted on here that basically concluded that autism could result from any number of genetic mutations, and that each autistic had a unique combination of mutations in his/her DNA. IT would be one thing if it were something like Down's Syndrome which is caused by a mutation in the same gene every time it manifests, but if it's that variant genetically then it's going to be impossible or at least very hard to cure. I'm not trying to tell parents of low-functioning autistic children to completely forsake the idea of a cure, but to be realistic. The cure isn't coming this decade, it may not even come this century if at all. I dislike Autism Speaks for their emphasis on curing autistic individuals, not because they don't need a cure, because they do, but because based on the current trends, finding a cure for autism is the equivalent of trying to reach the moon with a hang-glider. It's simply an impossible goal, and they would find better use of their time searching for ways to help autistic individuals cope, and not just eradicating autism.

"Autism Speaks" only "Speaks" about money, their own money to be more precise. Alex gave them a free outlet to plug the Idea that they actually care about anything or anyone else on ANY planet. Their Real Idea is that Autism is Wrong and is responsible for most of the worlds problems and the entire Planet would be a better place without Autistic People.

Regardless of the Repetitive Mantra He Repeats Repeatedly, He is absolutely full of himself.

Hopefully he will become a Human some day, for the sake of his own son at least.

You've got to start somewhere.

It sounds like this man is responding to his own emotional needs.

I was thinking about this topic in connection with two young people I know. Both on the spectrum.

One, I can't imagine his parents thinking in terms of a cure, as far as autism goes. I can't see them seeing those traits as something to be cured. It's who he is. Help the child grow and develop. Just as one does with all children. This is a child who talks, and interacts.

The other child, age 6, doesn't talk, isn't potty trained, doesn't look at people, doesn't interact with people. I can see his parents thinking of autism as something to be cured. Not that they don't accept him and love him as he is. But, well, for them, with their child, autism is definitely a disability, not an equal but different.

The parent of a child like the 2nd child, when they talk about wanting a cure, they are thinking of children like their own. They ARE NOT talking about wanting a cure for the first child. They are not talking about wanting a cure for someone like you reading this. That's not the subject. If you take it personally, and think they want to cure you, you are misunderstanding. You are applying their words to something they just don't apply to.

The difficulty is, it's not like there's two distinct groups, and everyone is like either the first child, or the 2nd. It's a spectrum, with varying degrees of abilities. So, there's no simple way to label the differences. Yeah, there's autism versus asperger's. There's low functioning versus high functioning. But there's no clear line between the two. Still, the difference between these two children is real. There's a real range. The people who want a cure... you are not who they want to cure. Not only are they not talking about you personally; they aren't talking about someone like you. They are talking about someone very different from you. Shares a label, yes. But different.

And they aren't talking about wanting their children to be ordinary, average. They want their children to be able to communicate their needs, feel themselves, use the toilet, read, write, stuff like that.

Don't be so sure about that, Kiley. I know whereof I speak. I have years of experience with a curebie mother who spent a long time looking into biomedical interventions. She would've tried more than she did except for two things. First, she respects my desire not to be cured (in the same way that she respects my desire not to get novocaine when I go to the dentist). Second, I've always known that a "cure" would be inherently a bad thing. All the same, it scares me to think that if not for her view of me as an equal, she might have tried the things she told me about. When last we spoke about it, she supported chelation. She tried taking me to a homeopathy doctor. She did take me to AIT (which was admittedly a good idea) and I've missed a few shots (then again, I'm anti-vax anyway, for reasons not related to autism; in fact, I used to worry about whether not vaxing my kids someday would mean they'd all end up NT). She supports huge (a few thousand times the RDA) shots of vitamin B, even in a case like mine.

Yes, we all suffer from the curebies in our lives. Don't say I don't have the right to complain because I'm not the one they want to cure. I know I am.

Here is what the President is saying (Mark Rothimayr) "We know there's a genetic predisposition, we know there are environmental triggers. The history of autism science is like where cancer science was 40 years ago --- it needs to catch up. We need better diagnosis, we need better treatment."

and here is what the Research department says (Andy Shih): We don't know exactly what causes autism, but the prevailing theory is that there's a genetic predisposition — and we know from twin studies that this genetic component is significant — and there are likely to be environmental factors. Unfortunately, we're just not sure what the environmental factors are." http://www.revolutionhealth.com/conditi ... /tips-shih

(Of the court case findings that there is no casual link between vaccines and Autism "This really puts this issue to bed," said Andy Shih, vice president for scientific affairs of "Autism Speaks," http://edition.cnn.com/2008/HEALTH/09/0 ... index.html

Meanwhile on the sly we have the Vice President (Peter Bell) sending vaccine stuff
to journalists on the sly. http://scienceblogs.com/insolence/2009/ ... tin_in.php

A house divided? May also explain why their income and expenses looks
the way it does.

You know that the whole cure thing is being put on the backburner. No money in the cure. They have not cured anything since polio. They are not going to cure Autism and they know it which is why both Geraldine Dawson and Andy Shih are pushing for pharmaceutical solutions and building an extensive genetic bank.
Were pharmaceuticals supposed to be the bad guys? You know they built their followers on fearmongering about the mean and nasty pharmaceuticals poisoning their kids?
Now it is about the payday and nutcases like the Wright's Daughter an Jenny McCarthy are being distanced in association.
You guys do see this wright...I mean right?

Useless, treacherous, and deceptive organisation

What's this in reply to? I see no posts from a Kiley.

Autism speaks is a worry and make no mistake


I have noted that they are having many executives with experience in
institutions dealing with Birth defects and early detection of
infantile and prenatal disorders. Further to this was the statement of
Geraldine Dawson saying that they have been able to diagnose Autism in
children at around the age of 2, and have hopes to diagnose at an
earlier age. How early?

Now. Let's put together what we know as laymen.
They are looking at Autism diagnosis earlier than two years. They have
been stockpiling genetic tissue of Autistic people "New York, NY (October 7, 2009) – Autism Speaks' Autism Genetic Resource Exchange (AGRE) and the Autism Tissue Program (ATP) continue to play an integral role in continuing genetic research and new findings in the complex autism inheritance and causation puzzle. In a study published in the October 7, edition of the journal Nature, an extensive research team of more than 75 research institutions identified semaphoring 5A, a gene implicated in the growth of neurons to form proper contacts and connections with other neurons. Previous studies have reported lower levels of this protein in blood samples from individuals with autism as compared to controls. In this study, the researchers were also able to extend that observation to the brain tissue of individuals with autism vs. control"brains. http://www.eurekalert.org/pub_releases/ ... 100709.php
And they have many people in the executive with central roles in areas that specialised
in early and prenatal detection.

IF they could detect genetically the possible predisposition of the
unborn child to being on the Autism spectrum they COULD tell the
expectant parents. (Just like they do with children with
possible/suspected Down's Syndrome).

Now IF the pregnancy is terminated, they will NOT be responsible for
it. If babies are going to be terminated before birth to the extent
they are in comparison with Down Syndrome babies, then Autism rates
may drop from 1 in 155 to maybe 1 in every 3100. Those autistic
children that do get born can be medicated with the potions from their
friends in Pharmaceutical from that they are paid for patenting from
results of their genetic research.