angry autism/aspie culture online

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Registered: 03-28-2003
angry autism/aspie culture online
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Sun, 10-12-2003 - 1:29am

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Edited 2/19/2008 9:06 pm ET by littleroses

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Registered: 07-11-2003
Sun, 10-12-2003 - 4:17am

I know the sites you're talking about, and no, they're not too hard to find. But I don't have to look for them to know what they mean either. <?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" />


Okay, we're going to play one of my quickly imaginations games again.

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Registered: 03-28-2003
Sun, 10-12-2003 - 10:04am
you know, I've been to those sites as well. A lot of them sure are down on ABA! Still, I would send my child to ABA because I think it could do what it says it does. But that's not my thought on this.

Maybe it is from my past as a counselor working with adults with disabilities, but I don't see that attitude as being just bad. What I see it as being is a motivator and a coping mechanism. Also, in my mind it lends credence to my opinion that people who are on the spectrum actually are very social beings, just in an atypical way. And, when they are able to communicate among themselves, they understand their way of socialization a whole heck of a lot better then, say, I do! They also see the value of their way of interpreting the world.

Actually, the Deaf community has been going through this for ever, but with the introduction of cochlear implants, it has shifted from the prism of "if there was a cure out there, would you take it?" to "are you going to get an implant, let your deaf kid get one, or stay in the deaf culture?" Now, cochlear implants don't cure all forms of hearing loss or functional deafness, but it addresses a lot of the issues in that population. A lot of people in the deaf community have turned away from this advent of technology. Our society doesn't have too much of problem with adults making this decision, but, as a whole, society is completely opposed to a deaf parent not allowing there child to get an implant. Actually, as I understand it, society is much more accepting of a hearing parent making the decision not to get an implant for their deaf child. It has become fodder for the court systems. At this point, I know parents still have a foot to stand on in saying their child doesn't have to get an implant, but I seriously doubt that it will stay that way. And, I often wonder, should a parent be allowed to make that decision?

Anyway, What I think is, by forming the Aspie/Autie culture, what these folks are doing, as well as giving themselves the clout that comes with numbers, is, giving and getting acceptance. We all want that.

Sio

Who's procrastinating! Back to the dreaded paper that is due Wednesday and I can't seem to write!

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Registered: 03-26-2003
Sun, 10-12-2003 - 12:20pm
I have to interject here as well, when our son was diagnosed my Dh was but he is "normal, my son is normal.

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Registered: 03-26-2003
Sun, 10-12-2003 - 12:58pm
I just have to respond to this thread, I have been thinking about it all morning.

First, I don't think I would want to "cure" my kids as they have many strengths and gifts with their asperger's and are unique individuals. However, I am fortunate that my children are on the high/ mild end of the autism spectrum. I dare say that most of the adults online who don't want to "cure" their autism are also high functioning and able to live independently. For them I can see the point that autism for them is not a disability.

That being said, we are in the minority. I read recently that the majority of people with autism are still considered to also be mentally delayed or function as though they are. I asked DH if he felt this is true. (He works with a large number of children on all areas of the spectrum and knows what is going on within the county with regards to this) He says that those like are kids are the minority for sure.

Also, I have had the pleasure in my professional as well as personal life to meet a wide variety of autistics. I believe many of the parents wanting to cure autism have children on this end of the spectrum.

LEts do the imagining thing. Imagine you are a mom of 7 y.o. child with autism who has never called you by name. Imagine that this child only has a limited amount of cumminication of a few words that is used only to request need. Due to the lack of communication when you don't understand what they want and they don't understand you tehy can become very aggressive. It has gotten quite severe they hurt their little sister pretty significantly. This is common in your house and you have been wondering how long this child can live with you. You begin looking all over teh country for the good residential placements so your family can move to that state to be near your child for visits when that time comes. Would you want a cure for autism then? It is not as uncommon as you think.

Cait rides horses with this boy around her age with autism. I don't beleive he has ever said a word. Other than being more compliant and less anxious(medication) and a bit taller I have not seen him change in 2 years. He will never live independently. His mom also has a dd with PDD-NOS who Mike loves to play with. She is a really neat kid. I wonder how that mom feels on a cure?

I love my kids the way they are and I don't want to change them, but I realize that compared to others their expression of autism is much different. I wonder if the adults with severe autism living in residential and group homes could be online and communicate effectively how they would feel about being cured.

Renee

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Sun, 10-12-2003 - 2:11pm
I haven't read the other posts to this so I will say I am standing out on a limb. I don't want a "cure" for my aspies. For me, that would be removing the very essence of who they are. Can you imagine how horrified you would be to have someone say to you that they want to remove you from society? That is how I feel about the idea of "curing". I also want to comment on the idea that we are trying to help them fit in. I disagree. I am not trying to make my child fit in. I am teaching him coping mechanisms so he can deal with and manage all of those emotions and thoughts he has in his head. I am passionate about my husband and son being themselves. They have a different way of looking at life and *that* is what is making a difference in this world. It is our duty as their parents/spousess to make sure they understand that there is room in this world for everyone. Idealistic I might be, but I will fight to my last breath to have aspies treated as human beings who have everything to give to this world and be treated with the respect that they deserve.

Larissa

Larissa
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Registered: 08-30-2003
Sun, 10-12-2003 - 8:55pm
This reminds me of a discussion that DS and I had one day while driving. It was just DS and I when we saw this car with the license plate that read "CURE CHD" (I am not sure of the initials). We were trying to figure out what it stood for and out of the blue DS suggested that we get license plates that read "CURE PDD". I took the time to explore with him how he felt he would be different. He said that his whole self would be different. This is from a person with the disorder. My son wants to have a girlfriend and friends. We have talked about it and role played how he can ask a girl out and how to treat a lady. Actually he has a lot of acquaintances and at the home coming parade a football player called his name until DS acknowledged that he saw him. I felt proud for DS.

If I could I would take this disorder from him. I would do it because it is what he wants. I love my son and ache for him when he attempts to talk to someone but struggles because he can not get the words out right and people shrug him off.

Now that I am in tears (thinking about watching him outside the school trying to make conversation after I drop him off at school) I will close my post. Please understand I would not want him cured for me but because he asked for it.

Linda

Linda5Fburgerbear.jpg image by suzyqe1            &nb

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Registered: 07-11-2003
Sun, 10-12-2003 - 9:15pm

Oh, I don't have to imagine, I've lived it. I've also seen it, in much more severe forms than I live with through both my social and work lives. <?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" />


A friend of mine, who is now passed away, had a son with severe Kanner's.

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Registered: 07-11-2003
Sun, 10-12-2003 - 10:01pm

We seem to have gotten off on a footing of debating whether we should be looking for a cure or not. Correct me if I'm wrong (don't worry I'll take no offense) but isn't the question "Why is the mainstay of the Aspie Culture against the 'cure'?"


Well, to be honest, not all of them are. My friend Diane(AS) would love to find a cure. And Linda brought up that her DS has actually said he wants a cure. And they have the right to it if it ever becomes available. Even though I live with Aspies who are a part of that 'volitilely against being cured' sect I still support the Cure For Autism Campaigne. Why? Because there ARE people out there who WANT to be cured of their autism. It's like people being over weight. Some people want to find an answer that will help them effectively maintain a medically ideal weight while others could care less. My mom is chronically 30 lbs over weight and would LOVE to find something that would help her. But her sisters are 40 lbs over weight and are perfectly happy with themselves.


My DH is in the league of 'no cures'. He doesn't feel like there is anything 'wrong' with him. If offered a cure he would walk away from it. He has made very sure I know this. To him it's the same as being told that he is handicapped b/c he likes motorcycles instead of sports cars, or b/c he is a Modern Jew as opposed to Christian. He sees the porblems he has with society as more of a language/cultural barrier than anything else. He just wonders why it is his sole responsiblity to learn to live and speak as an NT while he lives in a state who's primary language is English but you can't get a job if you don't speak Spanish.

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Registered: 03-26-2003
Mon, 10-13-2003 - 6:05pm
The most important thing I can say to you, Linda, is this.......you have every right to want a cure for your son and for your son to want a cure. I would *never* deny anyone the right to want a cure for their aspie. I truly apologise for bringing you to tears. My intention was never to hurt you or make you feel that I disregard your feelings. The intention of my previous post was for me to say that I fall into the No Cure box and my reasons why. I obviously bungled my post and I feel shame that you are hurting because of it.

Larissa

Larissa
Avatar for mamabearof2
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Registered: 08-30-2003
Mon, 10-13-2003 - 10:22pm
Larissa, it wasn't your post that sent tears to me. It was thinking of how DS tries to communicate to others and they disregard him. It was thinking of his comment of curing PDD so he could feel better or be different. I am glad that he wants to have friends, he has been a loner all these years and seems to be blossoming in high school. I actually never thought of curing it until DS said something about it and I am in the see it to believe it and wonder how can this disorder be cured. I am a sentimental person and you didn't bungle your post.

I appreciate everyone on this board! :-) Thanks for being here for me,

Linda

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