Attitude towards curing autism / autism research

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Are you for finding a cure for Autism?
Yes 7%  7%  [ 3 ]
No 66%  66%  [ 29 ]
Yes, but I am fine w/ being on the PDD spectrum 20%  20%  [ 9 ]
Unsure 7%  7%  [ 3 ]
Total votes : 44

KBABZ
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13 Apr 2007, 9:13 am

I agree with gimp (welcome to WP by the way!), it all depends on where you are on the Spectrum. For a majority of it, it's perfectly viable to not cure it, but as you go to the other end, it's starts getting harder and harder to justify.

What CAN is (maybe intentionally) forgetting is that it's a SPECTRUM of different severities, not EVERYONE needs to be cured.


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13 Apr 2007, 11:25 am

In a truly natural world we would be seen as gifted. In this world of illusion and ego manipulation, its a different ballgame.

But Im still much happier as me (I think).


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natty
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13 Apr 2007, 11:42 am

This is a fascinating debate. Although i havent been diagnosed with aspergers syndrome i suffer badly from panic anxiety depresion and agrophobia . My psychiatrist sujjested that i may have aspergers. Im not convinced yet , but admittedly i do have some things in common with those who do .

I myself am actively seeking a cure for my problems as since i was a child i have always felt very left out of society , it didn't start out as a choice but ultimately became a method of defense . I don't like people , i dont trust them i dont seem to be able to understand them fully , i feel out of the loop , because of this i haven't made a sucess of myself in the work place and feel constantly anxious and paranoid in the company of others. It is a horrible way to live and frankly i wouldnt wish it on my worst enemy .

When i arrived on this forum i was most surprised to see the general consensus was that people with aspergers seem to cope admirably well in life despite there differences , but it has me thinking . Those of you who wouldn't want a cure even if one was available , have you always been highly confident in your abilities to cope ? are you the succesfull ones , the geniuses who found a niche and excel in your carreers ? have you forgotten how tough life was as a child or as a teenager ? Or does aspergers syndrome have such a span that covers both those who are succesfull and at ease with themselves up to those who like me have a great longing to be able to understand the ways of others, to fit in and to be accepted despite the fact we dont have some amazing talent to make up for our quirks and awkwardness around others.

When my son was very young , they thought he was autistic , i was scared for him and i did whatever i could to improve his chances in the real world . He has done brilliantly and is a confident and outgoing little man who has freinds and is lively , freindly and oblivious no doubt to his quirky use of language and somewhat strange behaviours . I love him totally however he is , but i still would not have chosen to forgo a cure when he was a baby and had profound problems that the drs belived he would never overcome.

It is likely that i have spoken out of turn here and should have kept my opinion to myself but i always think it is good to remind oneself that even when one person with a condition has faught the odds and conquered the world , there may well be others still walking a rough road to peace and acepetance of there condition and place in the universe.
bb natty



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13 Apr 2007, 11:59 am

That's not out of turn at all natty! The way you took your son's problems is the best way, not some miracle pill that'll magically solve all our problems.

Also, on the 'life is tough for a young/teenage Aspie' statement, I'm living proof that it's not always hard. I'm only 16 and I've had/am having an awesome time! :D (welcome to WP too!)


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13 Apr 2007, 11:59 am

natty wrote:
When i arrived on this forum i was most surprised to see the general consensus was that people with aspergers seem to cope admirably well in life despite there differences , but it has me thinking . Those of you who wouldn't want a cure even if one was available , have you always been highly confident in your abilities to cope ? are you the succesfull ones , the geniuses who found a niche and excel in your carreers ? have you forgotten how tough life was as a child or as a teenager ?


I think everyone needs to find what works for them. The past still haunts me and always will, and day to day life is still challenging. But I love being a visual thinker, extremely sensitive. If a cure took those away I wouldnt want to live.


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invivo
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13 Apr 2007, 1:10 pm

Niche? No I have not yet found that, but this is who I am, I dont want to be anybody else, certainly not normal, my differences led me to explore many pathways and issues, no way I am going to wanna miss that, if I find my place, my potential for happieness is greater than those of normal people. Difference is not sickness, I think I simply like the way I am, and whould never want to be anybody else



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13 Apr 2007, 1:53 pm

natty wrote:
This is a fascinating debate. Although i havent been diagnosed with aspergers syndrome i suffer badly from panic anxiety depresion and agrophobia . My psychiatrist sujjested that i may have aspergers. Im not convinced yet , but admittedly i do have some things in common with those who do .

I myself am actively seeking a cure for my problems as since i was a child i have always felt very left out of society , it didn't start out as a choice but ultimately became a method of defense . I don't like people , i dont trust them i dont seem to be able to understand them fully , i feel out of the loop , because of this i haven't made a sucess of myself in the work place and feel constantly anxious and paranoid in the company of others. It is a horrible way to live and frankly i wouldnt wish it on my worst enemy .

When i arrived on this forum i was most surprised to see the general consensus was that people with aspergers seem to cope admirably well in life despite there differences , but it has me thinking . Those of you who wouldn't want a cure even if one was available , have you always been highly confident in your abilities to cope ? are you the succesfull ones , the geniuses who found a niche and excel in your carreers ? have you forgotten how tough life was as a child or as a teenager ? Or does aspergers syndrome have such a span that covers both those who are succesfull and at ease with themselves up to those who like me have a great longing to be able to understand the ways of others, to fit in and to be accepted despite the fact we dont have some amazing talent to make up for our quirks and awkwardness around others.

When my son was very young , they thought he was autistic , i was scared for him and i did whatever i could to improve his chances in the real world . He has done brilliantly and is a confident and outgoing little man who has freinds and is lively , freindly and oblivious no doubt to his quirky use of language and somewhat strange behaviours . I love him totally however he is , but i still would not have chosen to forgo a cure when he was a baby and had profound problems that the drs belived he would never overcome.

It is likely that i have spoken out of turn here and should have kept my opinion to myself but i always think it is good to remind oneself that even when one person with a condition has faught the odds and conquered the world , there may well be others still walking a rough road to peace and acepetance of there condition and place in the universe.
bb natty


panic anxiety and agrophobia aren't symptoms of AS. BTW I DID forget all the earlier times. Well, not really forget, but I didn't think of them. When I recalled them, I was HAPPIER! NOT because it was so easy, etc... There were bullies, and social interaction was practically non existant! I remember ALL of that! NOPE! There WERE good things, and I realized a lot of depression was NOT there earlier, and I think it is mainly because of the abandoning of new interests. All of the sudden, I'm HAPPIER!

And HEY, I ALSO remember the few times I FOUGHT BACK when there were bullies! A couple of them would probably have scared future bullies away if they saw them.

Steve



Joe86
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13 Apr 2007, 3:06 pm

Yeah, I posed this question cause I've been thinking lately about it. Also constantly wish I could be like everyone else socially for a change. I still don't like that I've got aspergers, maybe one day I will, though.



natty
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13 Apr 2007, 3:20 pm

It seems the majority of people here are happy with their lives , i think thats great i wish i was like that , i guess its not a disorder at all then and maybe more of a personality type or way of life like being gay or punk or something .

bb natty



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13 Apr 2007, 3:25 pm

natty wrote:
It seems the majority of people here are happy with their lives , i think thats great i wish i was like that , i guess its not a disorder at all then and maybe more of a personality type or way of life like being gay or punk or something .

bb natty


ACTUALLY its closer to being black white or asian.

Steve



natty
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13 Apr 2007, 3:27 pm

ok , i guess your right.

bb natty



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13 Apr 2007, 3:40 pm

EarthCalling wrote:
However, I know a mom who has a son who is LFA, all he can do is sit on a bouncy ball, screeching and spinning a thomas wheel. He is 15. He is almost toilet trained, but frequently walks around with a dirty bum and his pants down at his ankles. He will always need assisted living. He developed perfectly normally until a year old. He walked at 10 months! So he is not low IQ, just extremely lost to this world.


Some people with austim are MR. That is unfortunately sad but true. He has a very young mental age which is the definition of MR. There's not a child in there that is lost. I just don't believe that from my experience being involved with autism and watching children both HFA and LFA grow up. People with cerebral palsy can be MR and many are not. No one knows the exact mechanisms of why some children do not develop or even regress. There is good and bad in everything and every life is valuable, IMO.

Edited to add: if we perpetuate the idea of someone being "lost," it just gives credence to the curbie attitutde of "recovery."


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Last edited by SeriousGirl on 13 Apr 2007, 3:54 pm, edited 1 time in total.

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13 Apr 2007, 3:52 pm

i'm not for finding a cure although i do want to know WHY

as a researcher... i know that it's freakin hard to get money to do your research simply for the sake of answering WHY

that's why the sales pitch for many grants for scientific research are "Cure this"... it's just a justification for spending money. and i think that's why maybe a lot of scientists are desensitized to public messages associated with foundations giving grants like this... cause regardless of the public message... all scientists see is: we give you money so you can help find a cure... and the scientists interpret as... ok, i word it this way... you give me money and i keep doing what i was going to do... +/- little tweaks to appease people

that's pretty much the anlge on all grants that all research applies for... but it's not to say that all research that applies for these grants is cure-oriented. for sure some is... as im sure there are researchers who have their own beliefs about diseases ect, just as anyone else...

but i doubt that's even the majority of the cases... scientists are pretty nerdy and just like doing stuff because it's interesting... well, i do anyway!! !!

picture your quintisential "aspie-ish-scientist" who loves researching the most assinign aspect of say neuro biology... they could write up a grant with their ideas and desires/thoughts for that area of research... but then tact on an: this is important research cause it could cure _____ ....and pretty much apply for any grant with that "cure-agenda" for ________ condition

that's generally what happends.... it's not like foundations like autism speak give scientists their BS propaganda (beyond the find a cure bit)... caus honestly, foundations like autism speaks DONT GIVE A DARN About the related research... they just want the PR (public relation) of being able to claim they're trying to find a cure...

i doubt they even comprehend a word of what actual research is doing... just like scientist would say, "what? they wanna drown babies?"

so i don't really emphasize a direct relation between the two...

i see it's a bunch of BS that both sides (scientists and people (foundations that donate to scientific research) have to have their own separate agendas to get anything done

i hope that the autistic community can come up with it's own foundation to promote/fund research for the sake of AWARENESS... we could come up with a whole suite of grants and such that emphasizes that wording... to replace the whole "cure" agenda

we could have scientists write applications for grant money to explain how their research could help those already with autism ect...

this would help support a lot of neuro research (as opposed to say genetics... for reasons i don't wanna get into) which could then in turn give a lot of insight to how the brain works and thus allow SCIENTISTS AND PEOPLE understand how the autistic brain works...

so that we can help more people work together to integrate the NT/AS society.

so that's how i feel about the "cure"


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13 Apr 2007, 3:55 pm

SeriousGirl wrote:
EarthCalling wrote:
However, I know a mom who has a son who is LFA, all he can do is sit on a bouncy ball, screeching and spinning a thomas wheel. He is 15. He is almost toilet trained, but frequently walks around with a dirty bum and his pants down at his ankles. He will always need assisted living. He developed perfectly normally until a year old. He walked at 10 months! So he is not low IQ, just extremely lost to this world.


Some people with austim are MR. That is unfortunately sad but true. He has a very young mental age which is the definition of MR. There's not a child in there that is lost. I just don't believe that from my experience being involved with autism and watching children both HFA and LFA grow up. People with cerebral palsy can be MR and many are not. No one knows the exact mechanisms of why some children do not develop or even regress. There is good and bad in everything and every life is valuable, IMO.


I read an interesting book. I actually just scanned it at the library(I was looking for something else), but there were some interesting things. For one thing, it spoke of the brain growing at an unsustainable rate, and even dangerously so when you are basically a BABY until a fairly young age. The kid probably has more potential at that time than any other. It soon after is pared back. Frankly, apparantly this is one thing that is different about autism. Some don't get pared back so much and have earlier memories and better abilities. Some get pared back too much, and regress. The next spurt is around 8-9, and probably accounts for changes some here have mentioned, and it is pared back a bit after adolescence.

Steve



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13 Apr 2007, 3:55 pm

SeriousGirl wrote:
EarthCalling wrote:
However, I know a mom who has a son who is LFA, all he can do is sit on a bouncy ball, screeching and spinning a thomas wheel. He is 15. He is almost toilet trained, but frequently walks around with a dirty bum and his pants down at his ankles. He will always need assisted living. He developed perfectly normally until a year old. He walked at 10 months! So he is not low IQ, just extremely lost to this world.


Some people with austim are MR. That is unfortunately sad but true. He has a very young mental age which is the definition of MR. There's not a child in there that is lost. I just don't believe that from my experience being involved with autism and watching children both HFA and LFA grow up. People with cerebral palsy can be MR and many are not. No one knows the exact mechanisms of why some children do not develop or even regress. There is good and bad in everything and every life is valuable, IMO.


this is why the research im interested in is focused on targeting that crucial developmental timeperiod that learning ect is effected with autism and through what mechanisms...

i want to give children their optimal chance to keep up as long as possible and to help those caring/teaching them learn what's going on and to help as well...


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