Board index › General Discussion › General Autism Discussion

Why are so many aspies against medical research in Asperger?

Page 2 of 3 [ 37 posts ]  Go to page Previous  1, 2, 3  Next

Previous topic | Next topic

rapidroy
Veteran
Veteran

User avatar

Joined: 28 Dec 2012
Age: 35
Gender: Female
Posts: 1,411
Location: Ontario Canada

29 Jan 2013, 6:41 pm

Tyri0n wrote:
DVCal wrote:
I was talking to some fellow Aspies about volunteering for medical research in Asperger, and all of them seem to very much opposed to it. I am talking about EEG, MRI, or blood and tissue sample type research.

I would be happy to help in such research, and don't get the strong opposition.


I had a neuropsychiatrist who said "Don't worry, I'm not treating you as a subject." My response was "Don't worry, I'd love to be a subject in published research."

I don't get it. All the people who are against cures, I hope you all have jobs. Because, if not, I'm not sure why you feel entitled to be a dead weight on society because of your condition, if it's reversible. You are violating our collective rights as a society by consciously choosing not to be productive for dumb reasons.


I'll say it again, were I live if they find any epilpesy or major changes in your case in your brain while doing these tests you may as well kiss your drivers permit goodbye. For me thats one of the few things I have to inuse some independance in my life and if I lost it I would no doubt contribute even less to socity. Be careful what you ask for when doing these things, the answer may surprise.

When I die however thay can do what they want with my brain since I will no longer require its use and their be no of no vaule to me.



Tyri0n
Veteran
Veteran

User avatar

Joined: 24 Nov 2012
Age: 38
Gender: Male
Posts: 2,879
Location: Douchebag Capital of the World (aka Washington D.C.)

29 Jan 2013, 6:45 pm

rapidroy wrote:
Tyri0n wrote:
DVCal wrote:
I was talking to some fellow Aspies about volunteering for medical research in Asperger, and all of them seem to very much opposed to it. I am talking about EEG, MRI, or blood and tissue sample type research.

I would be happy to help in such research, and don't get the strong opposition.


I had a neuropsychiatrist who said "Don't worry, I'm not treating you as a subject." My response was "Don't worry, I'd love to be a subject in published research."

I don't get it. All the people who are against cures, I hope you all have jobs. Because, if not, I'm not sure why you feel entitled to be a dead weight on society because of your condition, if it's reversible. You are violating our collective rights as a society by consciously choosing not to be productive for dumb reasons.


I'll say it again, were I live if they find any epilpesy or major changes in your case in your brain while doing these tests you may as well kiss your drivers permit goodbye. For me thats one of the few things I have to inuse some independance in my life and if I lost it I would no doubt contribute even less to socity. Be careful what you ask for when doing these things, the answer may surprise.

When I die however thay can do what they want with my brain since I will no longer require its use and their be no of no vaule to me.


The U.S. has confidentiality laws that would protect against that sort of thing. I'm sure Canada does, too. In the U.S., information is not even really shared between the county and the city, much less private researchers and the state.



Raziel
Veteran
Veteran

User avatar

Joined: 25 Oct 2011
Age: 40
Gender: Male
Posts: 2,616
Location: Europe

29 Jan 2013, 6:55 pm

rapidroy wrote:
Tyri0n wrote:
DVCal wrote:
I was talking to some fellow Aspies about volunteering for medical research in Asperger, and all of them seem to very much opposed to it. I am talking about EEG, MRI, or blood and tissue sample type research.

I would be happy to help in such research, and don't get the strong opposition.


I had a neuropsychiatrist who said "Don't worry, I'm not treating you as a subject." My response was "Don't worry, I'd love to be a subject in published research."

I don't get it. All the people who are against cures, I hope you all have jobs. Because, if not, I'm not sure why you feel entitled to be a dead weight on society because of your condition, if it's reversible. You are violating our collective rights as a society by consciously choosing not to be productive for dumb reasons.


I'll say it again, were I live if they find any epilpesy or major changes in your case in your brain while doing these tests you may as well kiss your drivers permit goodbye. For me thats one of the few things I have to inuse some independance in my life and if I lost it I would no doubt contribute even less to socity. Be careful what you ask for when doing these things, the answer may surprise.

When I die however thay can do what they want with my brain since I will no longer require its use and their be no of no vaule to me.


Well, totally different reasons, but I was also getting into trouble, because I wanted to be part of a medical research who had to do with ASD.
Since then I don't do it anymore, because I also have to protect my rights.
I was in that programm, but didn't wanted to finish, that why this particular psychiatry just gave me an ASD suspicion and another shrink send an report about me to my insurance, what they aren't alowed to do and treated me like s**t. 8O
I'm so mad about it that they violated my rights, NOT with me again and being officially a "nut case", I have nearly no chance doing something against it.

So, NO research with me anymore! :shameonyou:


_________________
"I'm astounded by people who want to 'know' the universe when it's hard enough to find your way around Chinatown." - Woody Allen


Tyri0n
Veteran
Veteran

User avatar

Joined: 24 Nov 2012
Age: 38
Gender: Male
Posts: 2,879
Location: Douchebag Capital of the World (aka Washington D.C.)

29 Jan 2013, 7:00 pm

Raziel wrote:
rapidroy wrote:
Tyri0n wrote:
DVCal wrote:
I was talking to some fellow Aspies about volunteering for medical research in Asperger, and all of them seem to very much opposed to it. I am talking about EEG, MRI, or blood and tissue sample type research.

I would be happy to help in such research, and don't get the strong opposition.


I had a neuropsychiatrist who said "Don't worry, I'm not treating you as a subject." My response was "Don't worry, I'd love to be a subject in published research."

I don't get it. All the people who are against cures, I hope you all have jobs. Because, if not, I'm not sure why you feel entitled to be a dead weight on society because of your condition, if it's reversible. You are violating our collective rights as a society by consciously choosing not to be productive for dumb reasons.


I'll say it again, were I live if they find any epilpesy or major changes in your case in your brain while doing these tests you may as well kiss your drivers permit goodbye. For me thats one of the few things I have to inuse some independance in my life and if I lost it I would no doubt contribute even less to socity. Be careful what you ask for when doing these things, the answer may surprise.

When I die however thay can do what they want with my brain since I will no longer require its use and their be no of no vaule to me.


Well, totally different reasons, but I was also getting into trouble, because I wanted to be part of a medical research who had to do with ASD.
Since then I don't do it anymore, because I also have to protect my rights.
I was in that programm, but didn't wanted to finish, that why this particular psychiatry just gave me an ASD suspicion and another shrink send an report about me to my insurance, what they aren't alowed to do and treated me like sh**. 8O
I'm so mad about it that they violated my rights, NOT with me again and being officially a "nut case", I have nearly no chance doing something against it.

So, NO research with me anymore! :shameonyou:


Sounds like some people are way too paranoid. I'm currently reading a book that purports to link this ASD paranoia to the tunnel vision and lack of 3D perception that many people with Aspergers experience. Makes sense because it's completely irrational.

People who resist this type of research for irrational reasons aren't necessarily hurting themselves, but they are hurting millions of others, including low-functioning austistic children who might be totally neurotypical with the proper cure. So, it's an incredible wrong to society to impede such research.



Last edited by Tyri0n on 29 Jan 2013, 7:13 pm, edited 1 time in total.

btbnnyr
Veteran
Veteran

User avatar

Joined: 18 May 2011
Gender: Female
Posts: 7,359
Location: Lost Angleles Carmen Santiago

29 Jan 2013, 7:02 pm

At some universities or institutions, the rules say that the researchers are not allowed to show you brain scans or other research results, and if they find anything like tumors or other diseases, they are not allowed to tell you or anyone else either.



MakaylaTheAspie
Veteran
Veteran

User avatar

Joined: 21 Jun 2011
Age: 28
Gender: Non-binary
Posts: 14,565
Location: O'er the land of the so-called free and the home of the self-proclaimed brave. (Oregon)

29 Jan 2013, 8:03 pm

DVCal wrote:
The purpose is likely to find a cause or some kind of treatment or cure, or simply to study how an autistic mind works.


This is what gets many Aspies and Auties going. Most don't desire a cure.


_________________
Hi there! Please refer to me as Moss. Unable to change my username to reflect that change. Have a nice day. <3


Ramba_Ral
Raven
Raven

User avatar

Joined: 11 Dec 2012
Age: 39
Gender: Male
Posts: 110
Location: Wellford, South Carolina

29 Jan 2013, 8:18 pm

Tyri0n wrote:
Sounds like some people are way too paranoid. I'm currently reading a book that purports to link this ASD paranoia to the tunnel vision and lack of 3D perception that many people with Aspergers experience. Makes sense because it's completely irrational.

People who resist this type of research for irrational reasons aren't necessarily hurting themselves, but they are hurting millions of others, including low-functioning austistic children who might be totally neurotypical with the proper cure. So, it's an incredible wrong to society to impede such research.


that's your opinion which your welcome to have. just accept that not everyone is willing to be a guinea pig or a subject for medical experiments or clinical trials.



Yuugiri
Veteran
Veteran

User avatar

Joined: 20 Jan 2013
Age: 29
Gender: Male
Posts: 1,049
Location: Washington

29 Jan 2013, 8:21 pm

I'd love treatment. I hate being socially anxious and lonely all the time. I want to be able to relate to people at large. Plus, I'm all for furthering scientific knowledge in general.

No one would forcibly "cure" you guys. I doubt there's even a "cure" out there. Imagine having your lovely autistic brains with better coping mechanisms to deal with/without all the negative symptoms. No more meltdowns, no more overstimulation, no more social troubles (for those of us who are interested in connecting with other people). It's idealistic, sure, but I really do not see the downsides of getting treated for this.


_________________
Averages
AS: 138.8
NT : 54.6


emimeni
Veteran
Veteran

User avatar

Joined: 28 Sep 2012
Age: 34
Gender: Female
Posts: 1,065
Location: In my bed, on my laptop

29 Jan 2013, 10:02 pm

Tyri0n wrote:
DVCal wrote:

Well, totally different reasons, but I was also getting into trouble, because I wanted to be part of a medical research who had to do with ASD.
Since then I don't do it anymore, because I also have to protect my rights.
I was in that programm, but didn't wanted to finish, that why this particular psychiatry just gave me an ASD suspicion and another shrink send an report about me to my insurance, what they aren't alowed to do and treated me like sh**. 8O
I'm so mad about it that they violated my rights, NOT with me again and being officially a "nut case", I have nearly no chance doing something against it.

So, NO research with me anymore! :shameonyou:


Sounds like some people are way too paranoid. I'm currently reading a book that purports to link this ASD paranoia to the tunnel vision and lack of 3D perception that many people with Aspergers experience. Makes sense because it's completely irrational.

People who resist this type of research for irrational reasons aren't necessarily hurting themselves, but they are hurting millions of others, including low-functioning austistic children who might be totally neurotypical with the proper cure. So, it's an incredible wrong to society to impede such research.


Actually, there was anxiety over what exactly happened. That isn't paranoia. That's reasonable anxiety.


_________________
Living with one neurodevelopmental disability which has earned me a few diagnosis'


Fnord
Veteran
Veteran

Joined: 6 May 2008
Gender: Male
Posts: 60,939
Location:      

29 Jan 2013, 10:16 pm

DVCal wrote:
I was talking to some fellow Aspies about volunteering for medical research in Asperger, and all of them seem to very much opposed to it. I am talking about EEG, MRI, or blood and tissue sample type research...

... and you are NOT talking about paying us a fair wage as just monetary compensation for our involvement.

Look at it this way: If my blood contains a factor that would revolutionize medicine and make someone a billionaire overnight and earns them a Nobel prize for medicine, shouldn't that person be me?

Look at it another way: Patients who receive blood in a hospital are often charged as much as 500 US dollars per pint. What do I get for producing that pint of blood? A stale five-cent cookie and a ten-penny glass of watered-down juice.

While it may be true that anything worth doing is worth doing well, it is just as true that anything worth doing well is worth being paid well to do!



answeraspergers
Veteran
Veteran

User avatar

Joined: 11 Nov 2012
Age: 44
Gender: Male
Posts: 811
Location: uk

29 Jan 2013, 10:32 pm

Altruism at its finest

No you cant patent your own blood



Dillogic
Veteran
Veteran

User avatar

Joined: 24 Nov 2011
Gender: Male
Posts: 9,339

29 Jan 2013, 10:46 pm

Because Autism will be the next Down's (go-go abort the disabled). There'll never be a cure. Well, unless they figure out how to rewrite DNA (but when they do that, I think AS will be way down on the list of things to think about).



rapidroy
Veteran
Veteran

User avatar

Joined: 28 Dec 2012
Age: 35
Gender: Female
Posts: 1,411
Location: Ontario Canada

29 Jan 2013, 11:07 pm

Raziel wrote:
rapidroy wrote:
Tyri0n wrote:
DVCal wrote:
I was talking to some fellow Aspies about volunteering for medical research in Asperger, and all of them seem to very much opposed to it. I am talking about EEG, MRI, or blood and tissue sample type research.

I would be happy to help in such research, and don't get the strong opposition.


I had a neuropsychiatrist who said "Don't worry, I'm not treating you as a subject." My response was "Don't worry, I'd love to be a subject in published research."

I don't get it. All the people who are against cures, I hope you all have jobs. Because, if not, I'm not sure why you feel entitled to be a dead weight on society because of your condition, if it's reversible. You are violating our collective rights as a society by consciously choosing not to be productive for dumb reasons.


I'll say it again, were I live if they find any epilpesy or major changes in your case in your brain while doing these tests you may as well kiss your drivers permit goodbye. For me thats one of the few things I have to infuse some independance in my life and if I lost it I would no doubt contribute even less to socity. Be careful what you ask for when doing these things, the answer may surprise.

When I die however thay can do what they want with my brain since I will no longer require its use and their be no of no vaule to me.


Well, totally different reasons, but I was also getting into trouble, because I wanted to be part of a medical research who had to do with ASD.
Since then I don't do it anymore, because I also have to protect my rights.
I was in that programm, but didn't wanted to finish, that why this particular psychiatry just gave me an ASD suspicion and another shrink send an report about me to my insurance, what they aren't alowed to do and treated me like sh**. 8O
I'm so mad about it that they violated my rights, NOT with me again and being officially a "nut case", I have nearly no chance doing something against it.

So, NO research with me anymore! :shameonyou:


I know some one who lost their permit the very same way I discribe, not or AS testing but another alement. Ontario Canada goverment requires all these findings reported and they pull first and take months to years to give back. I drove a senior around for 3 months becouse of a simular medical issue.

Use your head and your gut to make these choices, I know i've been taken advantage of meny times thats why the alarm bells go off when people want to take a peek at my brain. Sometimes its better not to know, i've worked to hard to throw it all away for medical research that will likely lead to nothing. At the end of the day I have got to take care of myself, who else will?



rapidroy
Veteran
Veteran

User avatar

Joined: 28 Dec 2012
Age: 35
Gender: Female
Posts: 1,411
Location: Ontario Canada

29 Jan 2013, 11:11 pm

Dillogic wrote:
Because Autism will be the next Down's (go-go abort the disabled). There'll never be a cure. Well, unless they figure out how to rewrite DNA (but when they do that, I think AS will be way down on the list of things to think about).


Complete agreement, thats the easist way to take care of the "problem", dispite being a socialist this issue may just make a pro-lifer out of me yet.



Fnord
Veteran
Veteran

Joined: 6 May 2008
Gender: Male
Posts: 60,939
Location:      

29 Jan 2013, 11:23 pm

answeraspergers wrote:
Altruism at its finest

Screw altruism, I'm no loser - I get PAID for my work.

answeraspergers wrote:
No you cant patent your own blood

You CAN patent products made from someone else's DNA.

If it's from my DNA, then I should get paid.



DVCal
Veteran
Veteran

User avatar

Joined: 4 Apr 2012
Age: 41
Gender: Male
Posts: 636

30 Jan 2013, 12:25 am

I actually can understand why someone be distrustful of being a subject in medical study. Historically medical researchers have done some terrible things to those who they were studying. Even basically forgetting that the subject were people and not lab rats.

That was the past though. Today things are much better, and researcher have a much better grasp of ethics.