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HDIGhere
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13 Feb 2007, 8:53 am

I found this link while reading a post.

http://www.autismspeaks.org/sponsoredev ... ry_day.php

I am so glad.

I watched the video and listened to the audio. I took a deep breath and now I know it is all right to struggle sometimes as I do the best with the few resources I have available.


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agent79
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13 Feb 2007, 9:14 am

I do like that a video was made to increase awareness.

No doubt.

I do, however, have a problem with one TEENSY little sentence.

When the woman states (matter of factly) that she would have killed herself and her child if not for her NT child...This line is not representative of autism "everyday" as the title implies.

I hope that she received help before she took any drastic measures.

By the way, you may be bombarded with people who have some very strong feelings (negative) about this video. I just wanted to warn you.


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HDIGhere
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13 Feb 2007, 9:38 am

Thanks for your warning.

I believe that most people who will "bombarb" me are involved with AS that is not near the "classic autism" daily life I live.

In terms of "the lady driving off the bridge comment", it may sound to the listener like "did she really say that?" Yes, she did. . . maybe driven by desperation. I do not believe in suicide.

Like you, I hope she did get some help.

My son is now 20, just viewing their children etc. made me realized it a tough journey but with God's help and site like this we can survive each crisis.


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CockneyRebel
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13 Feb 2007, 9:48 am

Autism Speaks does not speak for me but thankyou, anyways. :)



nirrti_rachelle
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13 Feb 2007, 2:08 pm

"Autism Speaks" speaks for the parents, not the children.


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snake321
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13 Feb 2007, 3:58 pm

I have no problem if they want to find a cure for lower functioning aspies, they deserve the right to become NT or even AS if they so choose, some aspies take for granted how high functioning they are compared to lower functioning aspies. I'm more against the attitude surrounding curebie groups, as they only present 1 side of the spectrum often, and they pretty much paint a rain man picture, and paints all autism as a burden on society, which makes it hard for us AS people who might could have a chance in the social circles had we been respected and recognized equally as NT people, it also makes things even more difficult for the lower functioning auties.



squaretail
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13 Feb 2007, 4:02 pm

It doesn't speak for all/most parents of HFA/Aspie kids, either. It speaks TO the lay-public, really.

I can't discount the anguish that parents of more severely affected kids feel, though. I haven't walked in their shoes. Well, I did, actually, for about 2.5 years, until the girls started growing out of their more disruptive autistic behaviors. I can't imagine living my entire life with the stress load I felt for those first two-odd years.


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hartzofspace
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13 Feb 2007, 4:23 pm

I viewed this video with mixed feelings. I had a severely autistic sister when growing up, and sometimes I really felt as if I hated her. We couldn't go on family outings to places like restaurants or amusement parks, because she would scream and throw herself on the floor or ground. But what I resented, was when I felt overwhelmed, if I showed the least bit of emotion, I was accused of being jealous and wanting attention! So I had to learn to hold everything in, because my parents couldn't handle anymore. :evil:


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squaretail
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13 Feb 2007, 4:33 pm

hartzofspace,

If you don't mind me asking, how did you sister end up? Where does she live now - at home or in some sort of assisted living arrangement? Have her symptoms faded somewhat, or is she still as you describe in your post? Apolgies if this is too nosey.



hartzofspace
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13 Feb 2007, 8:26 pm

No, I don't mind you asking. She is still in an assisted living situation, but its actually the best situation for her, because her days are predictable, she has a schedule, and she knows what to expect. My father usually brings her home on holidays. Sometimes I still feel bad about her being there, but if you've seen the movie, Rainman, its easy to see why some things should just be left the way they are.


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KimJ
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14 Feb 2007, 11:43 am

As a parent of a "classic" autistic boy, Autism Speaks does not speak for me either. It's not "higher functioning" vs "lower functioning" or Aspie vs Autistic, it's how you view your child and the objectification of autistic traits.

I resent the attention that Autism Speaks receives. If I mention my son is autistic, people will immediately refer to them and offer "help".



anbuend
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15 Feb 2007, 12:13 am

HDIGhere wrote:
I believe that most people who will "bombarb" me are involved with AS that is not near the "classic autism" daily life I live.


Given that this is a site dominated (size-wise) by "AS" people, that may be true. However, it doesn't mean anything given that that's true -- most people who disagree with you in any aspect of anything here would be more likely dealing with "AS" than not.


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Litguy
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15 Feb 2007, 8:29 am

KimJ wrote:
As a parent of a "classic" autistic boy, Autism Speaks does not speak for me either. It's not "higher functioning" vs "lower functioning" or Aspie vs Autistic, it's how you view your child and the objectification of autistic traits.

I resent the attention that Autism Speaks receives. If I mention my son is autistic, people will immediately refer to them and offer "help".
Very well put. As the parent of two autistic boys, 18 and 13 (the thirteen year old being non-verbal), and as an undiagnosed aspie who went through a confusingly hellish time as a child and young adult, I agree with you completely.

I certainly wish my sons (and I have not NT children, but I'm not looking for any bridges to jupm off) did not have to deal with what they deal with. I wish, with all my heart, that my son would speak to me.

But, I hate it when people learn that my kids have autism and say, "That must be so hard." I just tell them that "it is what it is" but that really says nothing. They are obviously incapable of understanding that my children are happy, loving children and not some walking disorder.

I don't know how to get them to understand. Perhaps it doesn't matter.



HDIGhere
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15 Feb 2007, 8:49 am

anbuend wrote:
HDIGhere wrote:
I believe that most people who will "bombarb" me are involved with AS that is not near the "classic autism" daily life I live.


Given that this is a site dominated (size-wise) by "AS" people, that may be true. However, it doesn't mean anything given that that's true -- most people who disagree with you in any aspect of anything here would be more likely dealing with "AS" than not.


Agree. I thank you. Generally, speaking from reading post by "AS" people here, I am really amazed at the progress many of them have made and continue to make. I am really glad for their successes. For example, I have read post that discuss their inventions, academic skills at really high levels to name a few.

As a parent, I struggle daily for my son's basic right to be treated like a human (and not be discussed by medical professionals etc., [as he stands there] as if he is invisible).

I love my son but unlike most parents in your countries who have many available options and facilities to help them assist their child/ren, the onus is on me.

Believe it or not, some days if the going gets rough. My son who is way taller than I am gets like "the little boy pulling his mother in the picture". Imagine it is one thing when your child is pulling you and the child is an infant but I am convinced that only God and God alone is in charge when my adult son gets like this.


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mcewen
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15 Feb 2007, 8:20 pm

I likewise think that the video is produced for the lay viewer. It is unfortunate that it presents such a relentlessly negative view of autism, concentrates on the parents rather than the children, but if it raises public awareness.........
http://whitterer-autism.blogspot.com


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anbuend
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15 Feb 2007, 9:10 pm

mcewen, "awareness" should not be a goal in and of itself. You have to be aware of something, and I don't think the "awareness" raised by that video is "awareness" worth having. And no I don't mean who is in the video, I mean how the portrayal of the people in the video was slanted -- which is utterly disgusting and destructive and no amount of "awareness" could possibly justify something that vile. People's deaths have been publicly justified by that video. Nothing good about it (if you call empty words like "awareness" good, which I don't, awareness is neutral) can make up for that. Using the word "awareness" the way you use it has been done for years to justify an absolute free-for-all against autistic people ("oh it doesn't matter if something is unethical dangerous and disgusting, because there's AWARENESS here!"), and people need to stop allowing that and stop justifying that and stop using the word "awareness" as a get out of jail free card for unethical people. Because right now a person can say almost anything in public about autistic people, up to and including thoughts of killing us (or even actually killing us, has been done) and people will witter on about "awareness" and totally ignore the destructiveness towards autistic people. I happen to care about autistic people's lives a little bit more than I care about whether someone can paste a pretty little "awareness" sticker on everything that denigrates our lives and uncritically portrays us as burdensome or worse. Some kinds of "awareness" do more harm than good and should be avoided at all costs.

(And yes I can easily think of zillions of ways of portraying the exact children in that video more respectfully.)


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