Joined: Jun 24, 2011 Age: 16 Posts: 378 Location: My Own World
Posted: Thu Jun 14, 2012 1:42 am Post subject: Some one explain the problems with Autism Speaks?
I see all these posts about Autsim Speaks and how people hate it. I don't know enough about the subject to have an opinion. But could some one jsut explain some of the problems with it?
Allow me to quote Ken G from about two years ago, because he made great points:
Because difference is not a disease.
Because every brain is beautiful.
Because we love neurodiversity.
Because we are not puzzles, we are people.
Because not being able to speak is not the same as having nothing to say.
Because nothing about us, without us.
Because we celebrate the beauty of the autism spectrum.
Because we all shine on, like the moon, like the starts, like the sun. _________________ "If you can't call someone else an idiot, then you are obviously not very good at what you do."
I like that quote. For the OP, our brains are wired differently and we are just different from the majority of the population. We are not diseased or broken, and there is no cure for Autism. The treatments are all about adapting and pretending to be something that we are not and can never be. It would be like living a lie in constant denial. There is a recent thread here about would you want to be NT. The issue many brought up with this is that we would be completely different people. We would not be ourselves. our lives and abilities and accomplishments would be completely different. something like people after trauma that woke up with total amnesia and never regain their memory...
Autism Speaks wants to make ever AS person act 100% normal 100% of the time so they can "fit-in". That may look fine from the outside looking in but from the inside it would be a constant hell..
Funny I recently replied to a thread on Alldeaf.com about Deaf and Autism. Autism Speaks is similar to Oralism/ AG Bell Assn. etc. where hearing people decide that all Deaf must learn to speak and lip read and NEVER use Sign Language so they can "fit-in" and be normal... however we never will. Sign Language is our Natural Language and we are just different in that we communicate using Visual/Spacial Language which we can understand and express 100% without limitations. Not to mention that we have our own culture and rich vibrant history. That can never be done with Oralism... Yet for 100's of years hearing people have tried to force their will on us....
Normal is a four letter word IMO. Look at society today and how diverse it is.. Normal people need to learn to be accepting and tolerant of difference and different people instead of trying to make everyone like them! they do the same with things like LGBT etc too.
I also happen to be a Therian and a Furry so I am sure there are plenty of people that would say I need to be cured of those beliefs and interests too so I can"fit-in and be normal" Furrk that! I really have no interest or desire to be normal... I spent my whole life till recently trying to be what others thought I should be and I am done with it and happier since I decided to be myself instead of what others want/think I should be! _________________ AQ test =36: SQ test = 110: EQ test =8
Aspire quiz: Aspire score = 162; Neurotypical =42
RAADS=173 Total: Language= 10: social relatedness= 92: Sensory/motor= 37: Circumscribed interests=34
Autism Speaks wants to make ever AS person act 100% normal 100% of the time so they can "fit-in". That may look fine from the outside looking in but from the inside it would be a constant hell..
That's not part of autism speak mission. They want to help those whom struggle with symptoms of autism and associated co-morbid conditions. Per example of disabling symptoms associated with regressive autism, and co-morbids associated like GI problems and immune system problems.
Beyond that they are funding a significant amount of research to assist in support of those in the adult community of autism, as linked in the other threads recently discussed in the this discussion board.
It's all detailed in the other threads; and threads much longer than those up to 45 pages, linked in those threads. Most every possible concern both from the past and the present about autism speaks, that one could likely imagine has been addressed, and solidly refuted when the concerns were not backed up by evidence, when counter evidence could be provided.
Autism Speaks is one of over 2000 charitable organizations that fund assistance associated with autism, per the guidestar.org website for charitable organizations.
They continue to receive free advertisement here, through threads that have lasted up to three months talking about the organization, and repeating the brand name Autism Speaks over and over and over, for the crowd of online visitors, up to 1500, at any given moment, that browse through these forums, some seeing the brand name in a topic thread, provided an opportunity to google the term and find third part evidence that the organization has one of the highest reputations of any charitable organization in the US, through reputable third party watchdog groups.
The organization has millions of supporters in the US. The answer why is simple. There are a great many charitable minded people in the country that care about other people and worthy causes, and some seek to help this specific mission as either one of the 340 thousand volunteers that directly support the organization in the US, or one of millions of other supporters funding their efforts, in the approximately 180 charitable walks planned throughout the country every year, as well as the many other fundraising avenues that the organization plans and provides each year.
The rest of the country hears about those other 2000plus organizations as well. Like the local one in my area that has no affiliation with autism speaks but still manages to raise over 4 Million dollars in funding every year.
I'm sure Autism Speaks welcomes the continued free advertisement here, no matter how controversial the thread content might be.
Since then, Autism Speaks has grown into the nation's largest autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism
That part. Since those on the spectrum with at least normal intelligence often don't see just the downsides, they would object to the terms "cure" and "disease". (Also, I find myself able to speak quite well for myself, tyvm. Your name is insulting.)
We had an autism convention on campus and it got to the point there was Autism Speaks and another group and they didn't want to even be near each other.
Autism speaks does advocate for a cure. I think there is nothing wrong with that. If there was a cure for AS, I might take it, I might not. It should be my choice. Forcing me to live with AS is no more right than forcing a cure on someone with AS.
The other group advocated for total acceptance and to allow people with AS to do whatever they wanted in any situation, in effect, a carte blanche. If they wanted to run around a room and scream as a STEM behavior, that was 100% ok. I'm sorry, this is just not practical. We can give acceptance; tolerance, cut people some slack, but I don't think AS should be used as a carte blanche to be rude, act out, escape having to work in the real world, etc.
I see both sides of the issue. The autistic mind is something that makes people unique, and shouldn't be changed...but I also see people here who can't hold jobs, can't form relationships, can't live on their own, are miserable 24/7 and want to die, and that's not even counting the low functioning people who need constant care to stay alive.
But even the perspective that the autistic mind shouldn't be changed, that seems to be a theme that resonates with people who have a savant like ability.
So how do I feel? I take the words of John Elder Robison:
"We have to celebrate the autistic mind while addressing the disability of autism."
We don't have to take the person's uniqueness away; but we have to prepare them to interact in society and live a productive and happy life.
Joined: Nov 12, 2011 Posts: 6775 Location: Living in Faulkner's nightmare
Posted: Thu Jun 14, 2012 12:44 pm Post subject:
The problem is that some people take it as a personal insult that there is an organization devoted to finding a cure for something that they have. They lump it into the same "Everybody is mean to me because I'm autistic" catagory as being bullied in school or being ignored at a party or not being able to find a bf/gf, etc. They want the world to change to accomodate them rather than the implication that they need to change to survive in the world. Finding a cure for autism implies that autism is an undesirable thing to have, so they feel that Autism Speaks is pushing genocide, etc etc, all because they want to find a cure.
It's another example of overreacting and taking something personally which isn't meant personally.
I have no problem with Autism Speaks. _________________ Frances
What if Jessie's girl was Stacy's mom and her number was 867-5309?
Joined: Jan 13, 2012 Age: 14 Posts: 289 Location: Anywhere in the quantum-verse
Posted: Thu Jun 14, 2012 1:11 pm Post subject:
To put things simple they want to turn us into NTs on the outside but it would be hell on the inside. They clearly haven't heard that most of the advances in science and art were supposedly done by people with AS or any other form of Autism. For example Einstein. He revolutionized physics and even though he helped in making nuclear weapons, he warned others of an all-out nuclear war. Thus without Einstein and others who were probably like him this world would be s lot duller.
I've heard they are looking for an "autism gene" before the child is born and then giving the parents a choice to abort the child which would greatly reduce our population.
So for all that to Autism Speaks...... It's your voice speaking, not ours! _________________ Even in the darkest of times there is light to guide you.
I like that quote. For the OP, our brains are wired differently and we are just different from the majority of the population.
What do you know of the concept of brain "wiring"? Why do you characterize autism as being "wired differently"?
Quote:
We are not diseased or broken, and there is no cure for Autism. The treatments are all about adapting and pretending to be something that we are not and can never be. It would be like living a lie in constant denial. There is a recent thread here about would you want to be NT. The issue many brought up with this is that we would be completely different people. We would not be ourselves. our lives and abilities and accomplishments would be completely different. something like people after trauma that woke up with total amnesia and never regain their memory...
I wish you would discuss this as a serious adult issue, and not with hackneyed rhetoric of teenage angst. I lost out on my dreams and wants cause of my position on the spectrum. Your alarmism is bunk.
Quote:
Normal is a four letter word IMO. Look at society today and how diverse it is.. Normal people need to learn to be accepting and tolerant of difference and different people instead of trying to make everyone like them! they do the same with things like LGBT etc too.
Joined: Jan 07, 2011 Age: 23 Posts: 14794 Location: Somewhere in Colorado
Posted: Thu Jun 14, 2012 1:25 pm Post subject:
thewhitrbbit wrote:
We had an autism convention on campus and it got to the point there was Autism Speaks and another group and they didn't want to even be near each other.
Autism speaks does advocate for a cure. I think there is nothing wrong with that. If there was a cure for AS, I might take it, I might not. It should be my choice. Forcing me to live with AS is no more right than forcing a cure on someone with AS.
The other group advocated for total acceptance and to allow people with AS to do whatever they wanted in any situation, in effect, a carte blanche. If they wanted to run around a room and scream as a STEM behavior, that was 100% ok. I'm sorry, this is just not practical. We can give acceptance; tolerance, cut people some slack, but I don't think AS should be used as a carte blanche to be rude, act out, escape having to work in the real world, etc.
I see both sides of the issue. The autistic mind is something that makes people unique, and shouldn't be changed...but I also see people here who can't hold jobs, can't form relationships, can't live on their own, are miserable 24/7 and want to die, and that's not even counting the low functioning people who need constant care to stay alive.
But even the perspective that the autistic mind shouldn't be changed, that seems to be a theme that resonates with people who have a savant like ability.
So how do I feel? I take the words of John Elder Robison:
"We have to celebrate the autistic mind while addressing the disability of autism."
We don't have to take the person's uniqueness away; but we have to prepare them to interact in society and live a productive and happy life.
No one is forcing you to live with autism, there is no cure for it...its a different neurology how do you cure that? Also as far as I know most current autism treatments are more about making the autistic individual appear normal on the outside regardless of what they think or feel about it. At least that is the impression I get.
I also agree autism should not be used as an excuse to be an ass...but I think that kinda goes without saying. I do agree with the notion neurotypicals should be more tolerant towards those who aren't and those who have mental illnesses. I mean I don't know about anyone else but no matter how much I try I can not behave neurotypically because well i am not that way. Also I think its more that for some with autism functioning on a job in the 'real world' is an issue.....there are pleanty who do want normal jobs but simply cannot function well enough there are some who might not want a normal job and a normal life even if they could function in that setting. As for acting out are we talking intentional acting out our sensory and/or stress overload and not being able to control it 24/7?
Also I find myself rather unhappy and rather suicidal, but curing me of my autism or treatments to make me 'act normal' isn't going to make me feel any better......I mean part of the reason I'm unhappy is because there is nothing appealing about the current society, even if I could function in it. It would be nice if I had a savant skill that happened to be playing guitar in a metal or rock band, but no such luck. _________________ It's like alice in wonderland except, my names not alice and this is the real world not a dream.
Since then, Autism Speaks has grown into the nation's largest autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism
That part. Since those on the spectrum with at least normal intelligence often don't see just the downsides, they would object to the terms "cure" and "disease". (Also, I find myself able to speak quite well for myself, tyvm. Your name is insulting.)
There are many on the spectrum who can't speak for themselves. I think your arrogance is insulting. I bet you would have a different viewpoint if you lacked the ability to speak coherently for yourself.
Joined: Jan 07, 2011 Age: 23 Posts: 14794 Location: Somewhere in Colorado
Posted: Thu Jun 14, 2012 1:36 pm Post subject:
dalurker wrote:
Cio wrote:
Taken from their web page, the "about" section.
Quote:
Since then, Autism Speaks has grown into the nation's largest autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism
That part. Since those on the spectrum with at least normal intelligence often don't see just the downsides, they would object to the terms "cure" and "disease". (Also, I find myself able to speak quite well for myself, tyvm. Your name is insulting.)
There are many on the spectrum who can't speak for themselves. I think your arrogance is insulting. I bet you would have a different viewpoint if you lacked the ability to speak coherently for yourself.
I sometimes have a hard time communicating but I certainly don't want a bunch of people focused on making me 'neurotypical' to speak for me...I'd probably be afraid of them. I mean if someone cannot speak wouldn't be better to have someone who accepts them for that and still makes an effort to communicate or adress their concerns and such or someone who just wants to try and make them behave as normally as possible so they don't cause any trouble for anyone.
I think it would be better to help autistic individuals function as autistic individuals not try and push them to be more 'neurotypical'. If society doesn't like that maybe its time for a change. _________________ It's like alice in wonderland except, my names not alice and this is the real world not a dream.
I sometimes have a hard time communicating but I certainly don't want a bunch of people focused on making me 'neurotypical' to speak for me...I'd probably be afraid of them.
It's no picnic for me either. But there isn't a convenient way out, when it comes to advocating for cure. And this is realistically something to benefit future generations. I'll have to just brace myself for the way this is going.
Quote:
I mean if someone cannot speak wouldn't be better to have someone who accepts them for that and still makes an effort to communicate or adress their concerns and such or someone who just wants to try and make them behave as normally as possible so they don't cause any trouble for anyone.
It wouldn't be better. I don't want anyone's charitable acceptance. I value pride and dignity. I want mine back. Why is it ok for someone else to guard and need their abilities, but not for me? What moral obligation do I have to deal with a burden someone else does not have to? What do communication and behaving normally have to do with each other?
Quote:
I think it would be better to help autistic individuals function as autistic individuals not try and push them to be more 'neurotypical'. If society doesn't like that maybe its time for a change.
Function like which autistic individuals? The extremely high functioning, or the ones who lack so many abilities they live at the mercy of others?
