Interview with Peter Bell of Autism Speaks

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Methinks you missed, or failed to understand the significance of, the quotes around "autism", and the parenthesis.

The quotes mean autism is the guy in the video's word for what he'd like to change for his son, not Lene's word, and the parenthesis is Lene translating that into our terms.

I think Lene is spot on. I also think that there's a lot of crossover between autism traits and personality traits. And that's not contradictory.

Last edited by Mysty on 04 Jun 2010, 11:32 am, edited 2 times in total.

I meant why do you think that's what MOST PARENTS want, not where did he say that in the video.



I for one would be upset if my parents wanted me cured. IMO, my Asperger's is part of my personality, they are not seperate entities, and I'd happily keep the bad parts of my AS to preserve the good parts which I believe will one day make me successful. More importantly, though, it plays a massive part in making me the person I am, and I wouldn't want to be anything different.

What you're essensially saying here is that most parents want to ignore those considerations about their children and want them to be something different - and I disagree. I don't think that's what most parents want at all, or at least I HOPE not.

Hi Mysty, I'm a bit confused. I think I was the one who used the parenthesis.

I didn't say that most parents would want a cure. I said that most parents would like to remove difficulties in their children's lives i.e. make life better for them. Would that not be a fair enough statement?



ok, but you have the mental capacity and intelligence to decide that for yourself and express that to others. If someone has limited ability to make informed consent about treatment, then their carers need to make that decision for them. At least with treatment, the child may be able to communicate, even if only to say "I was happier as I was, please stop the pills".



I think you may have misunderstood.

Even in LFA cases, the autism and the personality and entangled, so it's simply not possible to remove the person's autism without affecting personality.

To make it clear, I am against cures fullstop. If your child is low functioning and you want to shove pills down their throat to change them, I am still against that.

Of course, that's a controversial subject and I understand if your views differ but that's ONLY IN LFA CASES. I will still argue against cures to HFA and AS.



You said most parents want to cure the autism because it'd remove the problems from their child's life. But then why are you assuming that this child only has problems because of their autism? NTs have all sorts of problems as well, all you'd accomplish by removing the autism is giving them a different set of problems.

Not to mention that removing the "problem" parts would will end up changing the person's personality in some way.

Ergo, I still disagree.

Oops... got the names backwards. Fixed, now.

First, it's an error to assume that everyone means the same thing by "autism". It's a word with multiple related meanings. (Like, "pride", both a virtue and a sin, and the two aren't the same, but are related.) Just because it's the same word, and talking about the same general idea, does NOT mean it's referring to specifically the same thing.

Secondly, it's part of a parent's job to do things that affect a child's personality. Growing up means changing over time. That includes personality. A parent's goal is not to keep the child the same person. A parent's job is to help the child to group up to be a responsible, happy, healthy adult. This does mean respecting the child as an individual and not trying to make the child someone's she's not, yes, but it does not mean the parents have no affect on the child's personality. They do. And if they parent well, that's a good thing.

I personally dont have a problem with therapies and help to get the autistic person to cope better with the world. If only that was what Autism Speaks has been about.

But no. I have been around since 2007 on this board and I have seen the advertising campaigns they have run. I have also read the Autism Speaks website in great detail so I am hardly misinformed.

People with LFA may be low functioning, but they deserve dignity and to be treated like whole people, not broken people who have had "monsters" run away wth their mind. Autism Speaks could have used their public lobbying power to increase the awareness of autistic people, not just autism at its worst, but they ran those campaigns anyway.. who knows, perhaps they thought autistic people, even low functioning people, couldnt read and wouldnt see the ads, but guess what, we did see them.

And it is just so incorrect, that people with LFA are all doing poorly while these Aspergians are living in paradise. A lot of adults with Aspergers are still lving with parents, or livng in poverty on tiny benefits. People with Aspergers need just as much help, but in other ways. And all people on the spectrum need to be accepted, not insulted.

Just because there is one nice guy working for them, to me, doesnt fix this.

Don't say LFAs are incapable of communication.

A smile means "I am happy."

A meltdown means "I am very not happy."

Shrinking away from touch means "that touch is bad."

Pitching a fit over the administration of a "cure" means "stop attempting to administer this treatment." Yeah, maybe if they could enter the NT world, they would think it was worth it. Or maybe they wouldn't. Who are you to say? And maybe they don't like the delivery mechanism-- maybe they don't like shots or pills or whatever. But give them the benefit of the doubt. Wouldn't you want someone to do the same for you?

That is my concern, too, especially the idea that they cannot form meaningful relationships. I get the sense that his heart is in the right place, though I wonder how much I should trust anyone from Autism Speaks.

I'm not even going to touch on the cure topic, for various reasons.

However, I think Peter Bell avoided the question a bit. He talked around it, from what I could tell. That was frustrating.

Note, though, that my understanding of speech wasn't the greatest when I watched this and I could have missed a very straightforward answer. It's entirely possible.

He did very straightforwardly say "this is what 'cure' means to me", not those exact words, but something basically like that. No, he didn't talk about various specific "cures" that some of us may not about. But that wasn't the subject. He talked about what it means when parents of autistic children talk of wanting a cure, and he was straightforward and direct about saying what that means for him.

Where do you get the information that the communication difficulties posed by Autism and the persons personality are inextricably linked?
And I don't get you on the 'against cures fullstop'. Do you mean you wouldn't take one for yourself? Or do you mean a cure should not be available to others?

He obviously wants the best for his child. But I thought it was contradictory when he said he doesn't know what his son wants but than says he wants his son to have meaningful relationships beyond saying "hi" and even mentioned dating... I'm confused by this b/c he sounds like he's assuming what kind of relationships his son actually wants but can't have as of right now...

Generally we all want the same things (in my experience).
And he has to assume what his child might want since the boy can't tell him

That is likely. Especially because he's being interviewed by someone with aspergers. he wouldn't say what he really thinks about autism. fake kindness, that's all it could have been.

on the other hand, he could have been truthful. i doubt everyone in autism speaks think the same thing about people with autism. it's rare that everyone has the same opinion in anything. this person actually might not agree with the general message of autism speaks.

however, i doubt he'd be the vice president if he didn't agree with the general message of autism speaks. my opinion is that he was lying though his teeth.

there was something odd i noticed though. he was talking about autism one minute and then he talked about health problems. so autism is a health problem now?