Autism Speaks...?

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League_Girl
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24 Mar 2010, 4:28 pm

pensieve wrote:

That was a joke. Look at my eyes rolling. ---> :roll:

I thought it was sarcasm. Oh well same thing.

MONKEY
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24 Mar 2010, 5:22 pm

KoS wrote:

I see when you're coming from here and I do agree with that post, especially the bit I highlighted. Autism is not a magical mystery tour for the HFA folks aswell, I'm about as mild/HF as you can get and even I don't see any "magic" or all that stuff in it. Yes the ASD mind is a very fascinating thing and scientists are still learning more about the genetics and structure of such people, and I say go ahead and study those genetics, do as many tests as you want if it means finding more answers.

I'm not too keen on autism speaks' methods and they tend to scare monger a bit but I'm sure they mean well, I was at first very against that organisation but now I've gotten over the "rage" as it were and I don't see anything too wrong with them. Autism speaks are geared towards the more LFA end of the spectrum and as fasciniating as their minds are their lives are extremely difficult and more so for their carers. And I don't understand the outrage over the puzzle imagery, I do see autism as a puzzling thing, not in a bad way but the fact that the sprectrum is so complex and varied that the best image to use is a jigsaw puzzle.

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Ebonwinter
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24 Mar 2010, 9:46 pm

What about a Rubik cube? Or however you spell it.....

I apologize I'm terrible with picking up jokes as well as delivering ones

psychohist
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24 Mar 2010, 10:02 pm

KoS wrote:

Firstly, I would never presume that a low functioning Autistic would want ANYONE to speak for them.

Then you should oppose Autism Speaks, because they claim to speak for those auties.

Quote:

Second, those of us in a position where we are forced to speak for our loved ones do so knowing that we love them, want the best for them and have spent our entire lives knowing them and understanding who they are. And they trust us.

Indeed. And sometimes that trust is misplaced, as when a family friend of my wife's married their LFA daughter off to a low functioning sociopath, who abused her. I'm sure they told themselves they did that for her, but the truth is that they did it for themselves. They just assumed, as neurotypicals often do - sometimes even those who are immediate family - that because she didn't speak, there was nothing in there to think.

For a child who has autism, autism is part of that child. Pretending that Autism is an external enemy that can be fought, as Autism Speaks does, may be a comforting lie to families, but it's a lie that pits the families against those children, even if they don't realize it.

ASPowerations
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26 Mar 2010, 1:10 am

KoS wrote:

Ok I watched the first video posted....nothing in it offended me. It shows very clearly, bluntly and honestly what it's like having LFA children. It is not an unfair depiction, as someone who has grown up around LFAs for around 25 years, I can say that with certainty. Autism isn't beuatiful and a magical mystery tour as many higher functioning individuals wish to believe. It is what that video shows. Like it or not. I've LIVED it!

I don't disagree with them donating money towards discovering genetic causes, it seems to be the most likely link, so they should persue it. Would you rather them put dollars into more research on the 'vaccination' rubbish or some other crackpot idea? That would be a complete waste. Abortions have nothing to do with discovering how the human body works, of people get abortions it's because that the kind of person they are and that's their choice.

Looking at their website it does seem as they believe that Autistics are not doomed, they envourage treatment and progressive therapies to help Autistic children lead better lives and put money into developing new treatments as well.

Autism Speaks clearly is not geared towards higher functioning individuals and it seems alot of people who make dergoatory comments have not known many LFA children or have LFA children.

If the organizers of Autism Speaks gets a healthy paycheck, that's fine, they don't seem to be so much a charity (although they hold charity events) but more of an organization that promotes awareness and understanding.

First of all, if you are autistic and you have no problem with someone trying to make the world scared of you, or implying that you are an inconvenience to society, then you should question whether or not you have enough self-respect. Second, Autism Speaks does not separate between HFA and LFA individuals. When they say that 1 in 110 people are autistic, they are talking about all of us. There is plenty of reason to be offended by their portraying the entire autism spectrum with the most severe cases at the ages where they are most heavily affected.

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ASPowerations
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26 Mar 2010, 1:14 am

KoS wrote:

To me this just perfectly illustrates the complete segragation of Aspies and Lower functioning Autistics and also the complete and utter lack of understanding that Aspies have about lower functioning Autistics, their lives and their families. If anyone had even half a clue they would not see these videos as negative...they are REALISTIC. Of course you'd be against cures and treatments if the only side of Autism you see is your own experience of having the mildest form of the condition which, really, is nowhere near as debilitating as MFA or LFA or even true HFA. Some people clearly need to get a clue.

Note to KoS: If you play the "You're not autistic enough" card, nobody here is going to listen to you. The fact is that the majority of the spectrum is HFA. Even if we were a small minority of the spectrum, our perspective and feelings would need to be taken into account.

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CockneyRebel
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26 Mar 2010, 1:28 am

I've said, many times, why I don't care for them. In fact, enough times, that I just can't do it, any more. The words are worn out, and everybody here knows, how I feel about them.

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guineapigirl
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26 Mar 2010, 4:26 am

If they are a group that focusses on LFA, their video should say "I am LFA" instead on "I am autism" because a neurotypical person who has not researched autism would see that and think that all autistics are LFA, when the majority are HFA/Aspie. And using scare tactics only hurts the autism community. It is these scare tactics that cause people to be misinformed about autism and research "crackpot theories." They do not understand autism so they cannot speak for it (with the acception of the autistic member.) If they want to raise awareness of autism, they should present all of the sides of autism, not just the negative ones. If they only want to spread awareness of LFA, they should specify that on their website and in their commercials.

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Sparx139
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26 Mar 2010, 9:17 pm

Quote:

If they only want to spread awareness of LFA, they should specify that on their website and in their commercials.

Agreed. The reason that they're hated is because they don't give the whole picture.

I'm all for research and treatment/cures, so long as that cure is optional (Yes, I know it could be like a Cochlear implant with all kinds of moral dilemmas, but lets not get into hypotheticals). If they can help improve the lives of people with LFA (presuming that they WANT the help), then good for them. But they shouldn't throw everyone on the spectrum in the one basket. And eugenics is... disturbing to say the least. I like me, the way I am.

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28 Mar 2010, 1:43 pm

I don't mind Autism Speaks showing how difficult living with severe or 'low-functioning' autism can be. It's good someone supports the people who live with this. I don't mind them researching genetics or pre-natal testing. For those who say it's genocide, the prenatal test for Down's Syndrome has been around for a long time, and the amount of people choosing to keep a baby with Down's Syndrome is increasing. It's not going to wipe out the spectrum.

What I do mind is that Autism Speaks show in their publicity video a woman saying that she thought about killing herself and her autistic child. Do you see any other charity doing that?! It wasn't even done in a context that I felt was saying 'Taking care of an autistic child can be so hard that it drives people to a sort of madness and can make them think about doing terrible things' I believe it's possible for them to say it's really hard to take care of a severely disabled person while respecting the disabled people themselves, and they are not achieving that at all. The NAS does a good job of it however.

What I do mind is Autism Speaks comparing autism to AIDS - I don't know anyone with AIDS but I think it is offensive to people with either condition, and it's not helpful in any way. Autism, no matter how severe, is never fatal. Autism is not contagious, it's not a matter of public health. People with HIV in this country do not require 24hr care like someone with LFA. They also once compared it to a child being killed in a car crash. I wonder how parents who have lost a child feel about this. It also contributes to the idea that it's better that a child is killed than is autistic.

What I do mind is Autism Speaks not increasing awareness in a helpful way. I'm fine with them focusing on the severe end of autism but they never explain what autism is properly (!) or that it's a spectrum. Wouldn't it help for people to understand what autism is? Would it hurt to mention that autism affects many people, some mildly and some severely and this is a charity to help those who are severely affected? Also, I saw a forum of theirs and it was full of people saying the MMR jab made their kids autistic.

As for 'running around saying 'i'm autistic, i'm autistic'' - er, I am autistic, so I've got a right to say that. I've never said every autistic person is like me. I also go around saying I'm a woman and that I'm an atheist. Should I stop doing that as well in case people start thinking every woman and every atheist is like me? :roll:

As for our condition giving us insight into LFA, we have different sides of the story (sorry I can't think of a better way of saying that). You see what everyday life is like for LFA people, and we have some experience of what they might feel. For example, we have sensory issues, and can say what it feels like when severely autistic people can't. We don't know for certain that what they feel is the same, but it's a good guess and it might provide some explanation of a severely autistic person's behaviour, that their non-autistic parents may have no understanding of as their child can't communicate and they don't understand what it's like to have sensory problems.

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danieltaiwan
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29 Mar 2010, 8:51 am

KoS wrote:

Woah Woah there.

So your saying that this video... is helpful to people with Autism? Either Low Functioning or High Functioning? There are many "low functioning autistics" who are intelligent and may not be able to speak yet they can type and are highly intelligent and many are on this website. See for your self. So demonizing autistics as a whole is helpful? There are aspects of Autism that are not positive. Yet there are many that are positive that can help autistics succeed in life which "cure groups" don't portray. They don't show the reality which is a spectrum. Autism isn't the source of "Low Functioning Autistics" problems it's the congenital issues that accompany autism.

Video

Asp-Z
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29 Mar 2010, 12:56 pm

KoS wrote:

I keep seeing things around here demoting a site called Autism Speaks, I checked out the website and I don't see anything really controversial there.

It is clearly geared towards lower functioning ASDs (only mentioning this because this place populated primarily by Aspies, or so it seems) and they promote treatment variation as opposed to insisting on one correct method.

So why are there so many random negative comments about them around here?

All you need to know...

nostromo
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30 Mar 2010, 4:16 am

danieltaiwan wrote:

KoS wrote:

Did you watch the same video as me? The one I saw seemed to be about what it's like to be the parent of an LFA child. It wasn't about what its like to be an Autistic adult, or what its like to be an Autistic child or even really about Autism at all, it was about the parents and what a hard job it can be.
Whats wrong with showing that?

danieltaiwan
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01 Apr 2010, 6:09 am

nostromo wrote:

danieltaiwan wrote:

KoS wrote:

This is why to protest them. http://www.notautismspeaks.tk/ That video was made by autism speaks and stereotypes all autistics as low functioning and unable to care for themselves and as worse than cancer or aids.

Jheuloh
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01 Apr 2010, 1:58 pm

First video of the thread made my ears bleed with all that screaming! :doh:

Second video was hilarious. Just like most movies, I must add. :lol:

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coralbell
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02 Apr 2010, 9:48 pm

A paid advertisement section for Autism Speaks Canada was in yesterday's copy of my Globe and Mail. This is the first time I have looked at their ads. I can't form a definite opinion of them yet, but the content was pretty negative in tone. All about how we need to "fight" autism. I am willing to take a second look at this, but my first impression is bad. Creepy.

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