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Kezzstar
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07 Aug 2008, 6:26 am

Does DAN have a website?


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slowmutant
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07 Aug 2008, 10:53 am

Ishmael wrote:
slowmutant, why defend Jenny? Look, I know she's trying - but shes a layman, not a scientist!
An average, every-day person - albeit with that foolish celebrity notion people attach to anybody they know of - but she has no authority! Trying doesn't count for jack sh** if you end up causing more harm than good.
As for DAN - Defeat Autism Now. Yeah, gee, THAT's an effort made in understanding - note the sarcasm.

If DAN or Jenny decide to invest in, oh, I don't know, unbaised legitimate medical research over the course of several years to identify any, note ANY, causes or environmental links in Autism, they can be my guest. But to parade on with unproven research that they claim is fact?

As the old expression goes, the road to hell is paved with the best intentions.


As I stated earlier, maybe Jenny has "her people" letting her believe she can do no wrong and is never in error. But if she honestly believes what she is doing is right, why would she stop or even listen to her detractors? I can understand why she would dismiss the "critics" and "haters" as such. Celebrities truly live insular lives. If you have such misinformation at your disposal, the road to hell is indeed paved with good intentions.



release_the_bats
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07 Aug 2008, 11:15 am

DW_a_mom wrote:
The problem with the activism that is currently going on, as was discussed a bit in another thread recently, is that it is leading to actual harm. There is a level of hysteria in the parenting community (in general, not just parents of ASD children) that is resulting in very poor and often destructive choices. Information is great. Awareness is great. Fear is not. And Jenny is spreading FEAR, despite the fact that she wishes to spread hope, it simply is not the case. What parents are hearing makes them AFRAID in many, many ways.


I agree. Why is it that complex issues so often devolve into simplified, polarized, fear-based messages that promote all kinds of harmful behavior? I guess it's because people respond most strongly and rapidly to simple statements designed to provoke fear.

My main contention with the current debate is that, on the level that most of society gets to witness, it is so polarized that it is counter-productive and out of touch with reality.

I know some kind of middle ground, or attempt to bridge the gap exists. On sites like this, you find all kinds of points of view and exchanges between differently-minded people.

I wish these higher-profile people could get over their fear (or tendency to promote fear in others) and encourage productive discussion between the autistic community and concerned parents. I know it happens here, but why not everywhere?

We're a great resource for these parents, so why do some of them choose to simply point out certain individuals or ways of thinking as excuses to dismiss an entire (large and very diverse) community? It's such a waste . . .



DW_a_mom
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07 Aug 2008, 11:54 am

release_the_bats wrote:


....

I wish these higher-profile people could get over their fear (or tendency to promote fear in others) and encourage productive discussion between the autistic community and concerned parents. I know it happens here, but why not everywhere?

We're a great resource for these parents, so why do some of them choose to simply point out certain individuals or ways of thinking as excuses to dismiss an entire (large and very diverse) community? It's such a waste . . .


It is a waste. Oh do I wish the bridges could be built. But whenever I see Aspies and DAN type parents mix, it's like instant combustion. The Aspies are so certain that the parents have it all wrong, and mixing that with the naturally blunt Aspie style, they come off as attacking the parents, from the start telling the parents they are blowing it and refusing to accept their own children. Good way to make a parent an enemy from moment one. The parents tend to assume there is nothing in common, that the Aspies cannot possibly understand, and that is amplified when they hear names like Amanda Baggs, whom many consider a fraud. When I sit and chat for a while, take my time, recognize that everyone has a point, a lot of common ground can be found. But it's slow and difficult, because everyone starts out believing they MUST sell their side, and sell only. Sigh.

The parents who come here will universally agree, I think, that you all ARE a great resource. I learn why my son does things, how the world looks from his perspective, etc. It has been HUGE in helping him create and maintain a positive self-image, and in allowing his gifts to float forward. But I do have to do quite a bit of "tuning out," because without a thick skin the negative posts can defeat one really quickly. There is a large amount of lashing out, and I understand the anger, and I understand the bluntness, but to a parent just trying to get through another day, it's the last thing one needs. So, unfortunately, despite the wonderful information and support, a parent has to know how to walk through minefields if they are going to make the most of the experience. Not all do.

It's the classic, "they need to understand us" divide. The NT parents want you to talk in respectful ways that really aren't natural for most Aspies, and the Aspies want the parents to hear them while using their own natural style.

My attitude has been that if I can't manage it here, how can I expect to maintain open and meaningful conversation with my own child? But most parents don't seem to see that point.


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Orwell
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07 Aug 2008, 12:51 pm

Kezzstar wrote:
Does DAN have a website?

Yes, but I won't link to it. Do a Google search.


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LeKiwi
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07 Aug 2008, 4:19 pm

DW_a_mom wrote:
My attitude has been that if I can't manage it here, how can I expect to maintain open and meaningful conversation with my own child? But most parents don't seem to see that point.


I think your child is very lucky to have a mother like you and I doubt there's any problems communicating!! If only all aspies were so lucky. :)


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DW_a_mom
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07 Aug 2008, 5:36 pm

LeKiwi wrote:
DW_a_mom wrote:
My attitude has been that if I can't manage it here, how can I expect to maintain open and meaningful conversation with my own child? But most parents don't seem to see that point.


I think your child is very lucky to have a mother like you and I doubt there's any problems communicating!! If only all aspies were so lucky. :)


Awe, thanks. But like most parents I'm a mixed bag. And I know my son sees it, and would prefer a few things different. Fortunately appreciating the good parts, shrugging most of the bad ... or nudging me to change, lol.

Um, one thing he thinks is that I spend WAY too much time on forums, and not enough doing things for or with the family. And on that, he would be right. Guilt trip going on here today, sigh.

For his birthday I gave him some "kick mom off the computer" and "mom must help you beta test your new game" coupons.


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Ishmael
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08 Aug 2008, 7:30 am

If anybody has ever spoken to these Mercury Myth Parents - note, MMP. I like it. You will find out just how much they resent their autistic child. They truly hate the fact that, as they will commonly say "I have been denied the child I ought to have had, my child has been denied life".
Sickening. I've even had - with these people knowing full well I am an autistic person - say "you have no idea how hard it is to parent an autistic child!"

Yeah, right, and when I was a child, getting into arguments with my mother, which usually ended with her crying, gives me no idea? Being an autistic person gives me no idea?

These people are, above all else, selfish. Why cling so desperately to that fear-based idea, instead of listening to their child and looking for any ways to improve their quality of life, instead of pining for a stranger with another face?


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slowmutant
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08 Aug 2008, 10:30 am

Quote:
"you have no idea how hard it is to parent an autistic child!"


You can't empathize with these autism parents at all, can you? Everybody deserves compassion, especially these put-upon if-misguided MMP parents! Typical ... :roll:



DW_a_mom
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08 Aug 2008, 12:13 pm

slowmutant wrote:
Quote:
"you have no idea how hard it is to parent an autistic child!"


You can't empathize with these autism parents at all, can you? Everybody deserves compassion, especially these put-upon if-misguided MMP parents! Typical ... :roll:


Read again. He said quite clearly that he DOES know how difficult things were for his own mother. He gets that.

Ultimately, however, trying to change the child is NOT the answer. You can't make your own parenting easier by holding onto an image locked into your head, of your child as an extension of yourself. And it is that image that is, in a way, inherently selfish, trying to make the child a referendum on your own self-worth.

I don't really blame the parents for that, however. It's tough to go against the flow of what society, in general, believes. To parent my AS child the way I am, I often AM going against the flow. It's easy to question if I'm making the right choices; there is very little support for them. Other, of course, than the simple fact that I can see I am raising a happy, self-aware, secure child who is coming into his gifts. But that took time, still. The transition period was full of self-doubt. Full of having to allow him to do things other adults found appalling. Even my own husband found appalling. That was hard. But so worth it - at this age, I would say my son is amazingly easy to parent. Wonder how long that will last, lol?!


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Last edited by DW_a_mom on 08 Aug 2008, 12:19 pm, edited 1 time in total.

slowmutant
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08 Aug 2008, 12:18 pm

Whatever. My point was about the importance of compassion, going to and from all people.



DW_a_mom
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08 Aug 2008, 12:22 pm

slowmutant wrote:
Whatever. My point was about the importance of compassion, going to and from all people.


Yes. I guess I know the compassion is there, because I've been posting with AS for quite a while, but it could be difficult for NT parents to see or feel, because it doesn't get expressed by most AS in a way that is clear to them. It would help a LOT in those conversations if the AS adults could learn to do that.


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LeKiwi
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08 Aug 2008, 12:42 pm

I don't necessarily agree that these parents going down the DAN route

Quote:
resent their autistic child. They truly hate the fact that, as they will commonly say "I have been denied the child I ought to have had, my child has been denied life".
Sickening. I've even had - with these people knowing full well I am an autistic person - say "you have no idea how hard it is to parent an autistic child!"

These people are, above all else, selfish. Why cling so desperately to that fear-based idea, instead of listening to their child and looking for any ways to improve their quality of life, instead of pining for a stranger with another face?


I know parents who've tried DAN with their children (with varying degrees of success) because they genuinely love their children. There's nothing selfish in their intentions at all; they want their children to be happy, to be healthy, to be as well as they can be. They spend hours working with their children, supporting them, guiding them through the many ups and downs of growing up autistic and my goodness, there are some you wouldn't dare get in the way of if someone's said something nasty about their kid! They truly love their children, they just see them in pain and not functioning well - physically, not mentally - and want to give it a go so they can try and alleviate some of those problems. I have questioned them on it and they've said they love their kids, they love the quirks and the humour and the outside-the-box thinking and bluntness and gifts that come with it. They just don't like the physical problems that are causing the kids so much pain, so are giving it a go hoping it'll help.

Absolutely nothing wrong with that.


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DW_a_mom
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08 Aug 2008, 12:52 pm

Thanks, LeKiwi, for pointing that out. When I first read the post, I had planned to address it, but then I found myself wrapped in the following post ...


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LeKiwi
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08 Aug 2008, 1:11 pm

DW_a_mom wrote:
slowmutant wrote:
Whatever. My point was about the importance of compassion, going to and from all people.


Yes. I guess I know the compassion is there, because I've been posting with AS for quite a while, but it could be difficult for NT parents to see or feel, because it doesn't get expressed by most AS in a way that is clear to them. It would help a LOT in those conversations if the AS adults could learn to do that.


I think this is a very valid point. It's all well and good expecting understanding from NT adults, but how about we aspies give them a bit of slack too? There's so much 'us v them' around and it isn't going to get anyone anywhere. We all need to attempt to understand one another and see from other people's points of views, even if it is difficult. And us aspie adults are the best spokespeople for the kids with it because we know what it's like and what they've been through. How are we going to help adults understand the next generation of aspie kids if we're too busy ripping them to shreds for trying to help in the only way they know how?


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