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Do you support Autism Speaks
Yes 3%  3%  [ 4 ]
No 97%  97%  [ 124 ]
Total votes : 128

OliveOilMom
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20 Jan 2015, 10:05 pm

I have no problem with Autism Speaks. I would guess that it's very hard to have a child on the severe end of the spectrum and that a parent would do anything in their power to be able to communicate with their kid the same way as other parents. I imagine that you would feel that your child is missing out on so many things because he's autistic, and not just things that "society" prevents them from doing, but things that the autism prevents them from doing - like communication and coordination and enjoying or even trying different foods or experiences without sensory issues ruining it for the child.

People can argue and say that it's the best thing in the world to do to accommodate the preferences of autistic folks, and that can be true. However if your child only eats chicken nuggets in a certain shape made by a certain company and only in a certain number served on a specific plate and accompanied by a certain number of fries cut a certain way and cooked only in the oven and not in oil, etc, and that child takes supplements so he's not malnourished, he's certainly ok eating that but who is to say that he wouldn't actually enjoy a mushroom swiss burger or a squash casserole if he could tolerate trying it? Who is to say that the kid whose spare time is consumed with one video game over and over might not like others if he would try to play them or even something outside like baseball if the autism hadn't ruined his coordination to the point where hitting the ball is out of the question, like it was with me? Who knows whether or not the adult who can't stand the social scene and is bitter and feels that society is stacked against him might not really like going to clubs and parties if the autism didn't make him hate the noise and didn't make him go blank when it was time to talk to someone he just met? People may say that they find something silly or unappealing, etc and would never enjoy it but the fact is that it's the autism that prevents someone from enjoying some things and in many cases from even attempting them. This isn't to say that without autism we would all be club hopping athlete foodies, but there are probably lots of things that many of us would like that we normally don't because of the limitations that autism imposes.

It's not just the limitations which we face and cope with that make autism look like a not so great thing to have. When a parent with a child on the really low end of the spectrum has a child who at 12 years old is not at all toilet trained and shows no interest in learning to use it, who doesn't sleep more than two or three hours in a row, who doesn't communicate much at all to the parent and who melts down several times a day and seems content and quiet only when given one particular toy or game and then is completely absorbed in it, or is only inwardly focused, then can you honestly say that the parent is wrong to wish that there were something that could be done to help the child communicate and sleep and go to the bathroom and just relate to world beyond the few things which totally absorb him? Could anyone honestly say that a parent is wrong or "evil" if they think that something is wrong with their child and want to fix them when they are in that situation? That doesn't mean they don't love their child. That doesn't mean they want to "kill" their child or just "don't want to be bothered". That means they love their child and want them to have the best that life has to offer. Would any of the autism advocates here actually tell me that they wouldn't feel the desire to do something to help their child if he were that severe?

Yes, Autism Speaks uses the worst case scenario and they do go over the top with their ads. If they didn't, they wouldn't get as much money. It's the same with marketing anything! When was the last time you saw a commercial for a new fast food burger and instead of people talking about how it was the best thing ever, the guy took a bite and said "Yeah, it's ok"?

Could you imagine a commercial where AS didn't go to the worse case scenario of stealing your child's personality and locking them away in a cold dark mental place with no comfort and only lonliness, but instead gave the day to day reality for adults on the milder end of the spectrum? "Meet Ann and Tom. Ann hates flourescent lights and at the end of her workday she has a headache and a very short temper. Eyeliner bothers her as do certain aspects of clothing, so she's forced to endure a life without the cat eye look or low rise jeans. She's doomed to never look cutting edge runway stylish! Eating in public bothers her, and when she's overwhelmed she finds it hard to remember what she's going to say. Sometimes she talks on and on about an uninteresting subject and the only way to stop her is to be rude! She's said childish things to strangers before she was able to stop herself in the past, like the time she asked a stranger if she could talk the lady's hairdo. Tom is single and has trouble talking to women. He isn't good at making small talk and he feels that any self improvement program he could start would be "changing for society" so he's now not only single, out of shape and unwashed, but he's also bitter. Tom is obsessed with this and can't find a woman because of the obsession and won't lose the obsession until he finds a woman who is a model. Please help Ann and Tom by donating most of your spending money to Autism Shouts. After all, what do you need it for - buying more stupid NT stuff?"

I have seen the ASpeaks ads and such and all the doom and gloom from them, but nowhere did I see them say or imply that we are not human or less than NT's or should be rounded up and put into camps and systematically killed. I don't like the fact that they play all autism as worst case scenario, but I also don't let it hurt my feelings or take it personally, and I don't want them banned from existing because of paranoia. I had a conversation on here not long ago with someone who dislikes the autism mom's blogs because when they talk about how hard it actually is to take care of their autistic child, it might make someone, sometime in the future, if and when the autism gene and prenatal test is ever developed, decide to abort their baby with autism based on the blog. Thats the very kind of paranoia that I'm talking about. If you are posting here, or anywhere for that matter, then autism speaks is probably not talking about you in their ads. Would it make those who hate it feel better if it were called "Very low function and unable to communicate with many other comorbids Autism Speaks"?

I don't see activists for other disabilities trying to hurt research and treatment the same way many autistics do. You don't see a lot of "deaf culture" people screaming about ear implants or grandma's hearing aids. You don't see paralympic athletes complaining that doctors are operating on spina bifita babies and making them able to walk when they are older. Because it's a spectrum disorder, there are lots of people worse off than you, and better off than you. You want to block those worse off from help because it hurts your self esteem that something unpleasant was said about autism? Or do you just really enjoy the limitations that autism has placed on you and think it's not only a gift but a sign of some kind of superiority?

So while I don't support ASpeaks with money as I don't donate to any charity, they certainly have my moral support and I do hope their research comes up with something to help us, or autistics generations from now. As for aborting a baby based on autism, well it wasn't autism speaks that gave autism a bad reputation, it was autism itself that did that.


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androbot01
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20 Jan 2015, 10:18 pm

I don't support Autism Speaks, either financially or morally. I think their use of the "worst case scenario" is laying the groundwork for increased abortions when the technology becomes available. Technology which they fund the development of. I would like to see them work to increase acceptance of autism rather than fear of it.



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20 Jan 2015, 10:28 pm

androbot01 wrote:
I don't support Autism Speaks, either financially or morally. I think their use of the "worst case scenario" is laying the groundwork for increased abortions when the technology becomes available. Technology which they fund the development of. I would like to see them work to increase acceptance of autism rather than fear of it.


That's also the very reason that I don't support Autism Speaks. I have big problems with that organizations for that reason.


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20 Jan 2015, 11:01 pm

CockneyRebel wrote:
androbot01 wrote:
I don't support Autism Speaks, either financially or morally. I think their use of the "worst case scenario" is laying the groundwork for increased abortions when the technology becomes available. Technology which they fund the development of. I would like to see them work to increase acceptance of autism rather than fear of it.


That's also the very reason that I don't support Autism Speaks. I have big problems with that organizations for that reason.


I do agree somewhat with both of you, and I want to say before I type my rebuttal that Cockney is one the posters here whom I respect the most and who I feel knows how to agree to disagree with someone on an issue without taking it personally.

As for the abortion issue, I do think that when the autism gene is found and a prenatal test for it becomes available that most, or at least a large number, will abort because of it. I don't blame autism speaks for that, I blame the fact that people don't know that autism isn't always, or even mostly, the "worst case scenario". Let me say right now that I don't think that the very low functioning autistics are less than human, nor do I think that they shouldn't be alive, or anything like that at all, but I will say that if there were a test to determine autism **and the level of functioning** prenatally that if I were pregnant with a very low functioning baby I might very well choose to abort. I'd like to think I wouldn't, but I probably would. I probably would for any profoundly serious thing like that. Thats me though, and what I would choose to do. I think I would do that because if I had other children already it would prevent me from being able to mother them as well as I could or if that were my first baby then it would mean I wouldn't have the time or energy (not to mention financial resources) available to have and effectively raise other children. I'm honestly just not up to that, and I don't even go around reading the parents blogs or watching autism speaks stuff. I felt that way before I ever saw anything by autism speaks. I remember always being worried whenever I was pregnant and waiting on my AFP blood test. That tests for Down Syndrome and I worried that I would get a positive result and that I would have to make a tough choice that I didn't want to make. Luckily, mine all came back negative, and while I don't know what I would do in that situation, I know what I think I would probably do even though I'd hope I'd be a better person and choose differently.

Before there was autism speaks, autism still had a very bad reputation. ASpeaks didn't bring that about. I do think they should spend more on education and focus as well on the milder end of the spectrum and educate the public that autism isn't always a Lifetime Movie of the Week, but I don't fault them for focusing on the more severe cases.

As to the issue of finding a prenatal test to determine autism causing abortion, what about people who abort based on the sex of the baby? People who plan on having only one child and who want a boy to carry on the family name will abort a girl. China has a one child policy and male children are favored so they will certainly abort based on sex. Should they stop revealing the sex in the ultrasound because a woman might use it to decide to abort? What about other prenatal tests that reveal serious birth defects and other issues that can cause a woman to choose to terminate her pregnancy? Should those not be done? I'm not asking these to argue or badger you, I'm honestly wanting your opinion on this.


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androbot01
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20 Jan 2015, 11:24 pm

I agree with prenatal testing and might do the same as you if the severity were found to be high. But it may not be possible to determine severity. At any rate, I wish Autism Speaks would not make their ads so apocalyptic. Dont they realize that there are some autistic people making a go of it.



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20 Jan 2015, 11:36 pm

I feel that it's wrong to abort a baby because it's not the gender that a parent desires it to be. I feel that it's wrong to abort a baby because it has a genetic disorder, I feel that it's wrong to abort a baby because it's autistic. I also feel that it's a poverty that an unborn child must die so that the mother can live her life as she wishes. I feel that abortion is wrong under every circumstance. If a woman doesn't want the baby, she can give it to someone who does want it. I also feel that sex selection abortions are wrong as well. It's like a knife to my heart knowing that gender selected abortions are still taking place in many parts of the world in 2015. I have issues with my birth gender as it is. I don't want to be reminded of what's going on in China, India and some parts of Africa. I believe in the sanction of all human and animal life from conception until natural death.


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21 Jan 2015, 12:14 am

CockneyRebel wrote:
I feel that it's wrong to abort a baby because it's not the gender that a parent desires it to be. I feel that it's wrong to abort a baby because it has a genetic disorder, I feel that it's wrong to abort a baby because it's autistic. I also feel that it's a poverty that an unborn child must die so that the mother can live her life as she wishes. I feel that abortion is wrong under every circumstance. If a woman doesn't want the baby, she can give it to someone who does want it. I also feel that sex selection abortions are wrong as well. It's like a knife to my heart knowing that gender selected abortions are still taking place in many parts of the world in 2015. I have issues with my birth gender as it is. I don't want to be reminded of what's going on in China, India and some parts of Africa. I believe in the sanction of all human and animal life from conception until natural death.


I'm pro choice, but I'm not gonna get into the whole abortion debate here, because neither of us will change the other's mind so it's pointless unless you enjoy debating, which I do. :-) However, you seem against ASpeaks being able to fund research to develop a prenatal test for autism because it could encourage abortion, so I guess my question is are you against other tests which women may based the choice to abort on? Are you against finding out the sex of the baby in ultrasound, or against tests that alert the parents to Down Syndrome and neural tube defects or ultrasound that shows anacephaly etc? I think that most women abort when they find out they have an alacephalic baby, which means a baby born with only a brain stem and no actual brain and those babies can't live very long at all after birth. Some people are against aborting for that reason but many staunchly pro life people do see that as a valid reason for abortion, since it's not something that's iffy, it really is a death sentence and a definite prognosis of basically no life at all - without an actual brain it's really not possible for anything.

What are your thoughts on those tests and also what do you think about abortion for anacephaly?


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21 Jan 2015, 2:11 pm

I don't do debates, so let's keep the peace.

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OliveOilMom
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21 Jan 2015, 4:46 pm

CockneyRebel wrote:
I don't do debates, so let's keep the peace.

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Oh, I wasn't trying to debate abortion with you, I was just wondering what you thought about those tests which are sometimes used to decide on abortion and what you thought about abortion for anacephaly. We won't change each other's minds but I was really curious on your views about those.

BTW, I like your peace sign. You have a lot of the really cool graphics.

And BTW Cockney, I know you like retro stuff like I do, so check out the thread I started on Random about retro and vintage. I had one on women's but decided to start one there so more folks would see it, since it's not just a girl's fashion topic. I'm going to be posting some cool links there, hopefully, if people seem to be interested in it.


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24 Jan 2015, 6:28 pm

So, the vicious ads are okay as long as they bring in the dough? And there are people in the deaf pride movement who oppose a cure.



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25 Jan 2015, 8:24 pm

PlainsAspie wrote:
So, the vicious ads are okay as long as they bring in the dough? And there are people in the deaf pride movement who oppose a cure.


See, that's what I don't get. I totally get and support self esteem no matter what, but opposing a cure for something on your body that doesn't work is kind of ridiculous.

My youngest son is deaf in one ear from birth, and he doesn't want an implant because he's used to it and couldn't imagine it differently and thats his choice but hes not proud of the fact that one ear doesn't work.

Autism is a neurological deficit, it's not some great and wonderful gift that society is ruining. I wish I didn't have it. Most people do wish they didn't have it. Who is to say that we wouldn't still have the good things we have even if we didn't have the bad? The focus and special interests are hardly the sole property of autism. Plenty of NT's have them. As far as I'm concerned, autism has done but cause me problems and while it doesn't make me or anyone else with it a horrible person, a waste of space, or deserving to never have been born, I'd love it if autism never existed. There is nothing wrong with that.

I can see deaf people being proud of what they have accomplished in spite of being deaf, but I see absolutely no reason to be proud that something on your body does not work. Thats taking things a little too far, in my opinion.


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26 Jan 2015, 3:29 pm

OliveOilMom, I personally find "pride" in things you don't control to be ridiculous as well, so I actually do agree with you in that part.

Overall though, you do take a very similar "apocalyptic" kind of view with autism, like Autism Speaks. You just see it as something wrong with you. I know I'm not going to really convince you to think otherwise, but this is an argument over opinion.

I'm not deaf, so I can't speak for the deaf community. Let's not go there.

But I ask, why are there people here who seem so angry, cynical, and tired of feeling like an outsider? Why are people here so angry at organizations like Autism Speaks?

A lot of people on here have genuinely felt deprived, and I'm definitely one of those people. Most of us were forced into a schooling system which didn't fit our personalities at all, and were forced onto services and given labels that may not have been 100% necessary. I don't think most people here like to be called "learning disabled", but that's the official term.

For me, autism/Asperger syndrome in many aspects has been a gift. I'm not going to deny the crippling and depressing aspects of it either (such as bad social anxiety), but it's not all bad, and it's the tremendous skills here that make many people think that autism, unlike deafness or being on a wheelchair, is not as objective of a disability as others. Perhaps because you see the averse things that it done to you, that's why you see it as such. However, I've seen how so many of my NT peers struggle with subjects such as geography, history, etc and I see how much more smarter I am than they are (sorry for the arrogance, but I've been considered a very smart student by many teachers). I've also seen how most don't even bother with new ideas, whereas my curiosity (perhaps due to my autism) allowed me to explore and gain more knowledge. Why would I consider this a disability? I'd never trade it for anything in the world.

Those reasons are why I refuse to support Autism Speaks, or even ideas that make autism out to be more negative than positive. It's this whole portrait of an apocalyptic condition that ends up wiping out civilization (or, perceived as so) that I will not tolerate, and I refuse to accept. It's this entire image of pity that we're all destined to be failures. Frankly I'm sick of being treated like I need help with everything I need.



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26 Jan 2015, 8:07 pm

Hansgrohe wrote:
A lot of people on here have genuinely felt deprived, and I'm definitely one of those people. Most of us were forced into a schooling system which didn't fit our personalities at all, and were forced onto services and given labels that may not have been 100% necessary. I don't think most people here like to be called "learning disabled", but that's the official term.

For me, autism/Asperger syndrome in many aspects has been a gift. I'm not going to deny the crippling and depressing aspects of it either (such as bad social anxiety), but it's not all bad, and it's the tremendous skills here that make many people think that autism, unlike deafness or being on a wheelchair, is not as objective of a disability as others.

I can't separate autism from myself and can't imagine life any other way. I remember wanting to tell people that they are missing something important, something I could see, but they couldn't. Only to find out later that it was me that is missing something.
Things have changed for the better over the years though, I think. There is way more tolerance of differing norms than there used to be.



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31 Jan 2015, 11:50 am

No, I don't support Autism Speaks.


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01 Feb 2015, 2:29 pm

HAHA no.



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04 Feb 2015, 9:23 pm

Hans - Oakland is a inner city s**thole so of course you stand out there