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Rose_in_Winter
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10 Dec 2009, 6:12 pm

I've noticed a lot of negative feelings toward Autism Speaks on this site. I'm wondering why people feel so negative about it. I mean, I know why I don't like it, but I'm hoping others will share why they feel that way.



Elementary_Physics
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10 Dec 2009, 6:20 pm

Good question. I was thinking about this earlier today - Glad someone posted on this topic.



10 Dec 2009, 6:21 pm

They are portraying autism as a horrible thing and making all the kids look badly effected by it than the whole spectrum.
Also the fact they are looking for a "cure" and lot of people on the spectrum believe they are going to start doing abortions in fetuses with an autism gene. I don't mean the Autism Speaks, the moms when they find out their fetus has an autism gene.
It's believed Autism Speaks is looking for the autism gene in fetuses.



Sati
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10 Dec 2009, 6:25 pm

They use very little of the money the raise to actually help autistic people.



Douglas_MacNeill
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10 Dec 2009, 7:53 pm

Autism Speaks takes the point of view of grieving and
despairing parents and family members of people who
have autism spectrum disorders. This organization has
no room whatsoever for the ideas of persons who do
have autism and are trying to make a worthwhile life
for themselves despite their circumstances; indeed,
Autism Speaks believes that "autism" cannot not deprive
those people who are living it live of any voice or opinion
about their situation. Attitudes of that kind are the
opposite of everything I stand for as a person with an
autism spectrum disorder. Autism Speaks has forced me
to resist its definition of the plight of persons with autism;
I will do so until my last breath, God being my helper.



Warsie
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10 Dec 2009, 8:50 pm

The majority of the upper echelons are neurotypicals and send money towards neurotypical biased projects on autism. and what the others here said.


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Willard
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10 Dec 2009, 9:27 pm

The public service announcements they're sponsoring now portray autism as some demonic force that takes over and inhabits the bodies of CHILDREN with autism (adults with autism are not even acknowledged as having existence).

Most offensive, they blather on about how much having a child with autism will cost parents (as if that were the primary concern to parents who love their children), and even worse repeatedly point out how HUMILIATING it is to have an autistic child and that autistic children constantly PUBLICLY HUMILIATE their parents by throwing tantrums and having meltdowns.

No sympathy or compassion for the autistic children themselves and the emotional stresses and frustrations they live with every day trying to communicate with a world that can't comprehend what they're going through - no empathy for the lifetime of obstacles and depression they face trying to function in a society not designed to accommodate their differences - and why should they offer that kind of thoughtful approach when their message is that autism is a DISEASE that must be CURED, ERADICATED, STAMPED OUT FOREVER even if it means preventing autistic human beings from ever being born, or aborting them before they can be.

Autism Speaks does not speak for autism, or for autistic individuals. They think of our differences as a CANCER on society. Autism Speaks speaks directly to the annihilation of those who are different, in the innocuous sounding name of 'a cure'.

They want to 'cure' us all, until we disappear. Its the final solution. :evil:



AnnePande
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11 Dec 2009, 10:04 am

Another thing is that they claim that 1 in 150 has autism, which number they would only be able to come to if they took absolutely all nooks and crannies of the spectrum.
But they only talk about the most severe cases of autism. Not about it being a spectrum. So they make it seem like 1 in 150 is severely autistic. Or at least it seems to me that they do.

That's really misleading. A true scare campaign.

And yes, also the tendency to talking about the parents having all the suffering, without thinking of the children.
The suffering is not the autism.
The suffering is having an autistic child.



wigglyspider
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11 Dec 2009, 11:03 am

They focus only on severely autistic children, and the unhappiness and confusion that can come with them, and don't acknowledge the fact that many autistics grow up to be much happier and/or more successful than that. It is aimed at parents and promotes curing their children and turning them back to normal instead of nurturing them as you would real children and being happy with them how they are.*

They don't have or want anyone autistic on their staff, last I heard.

And they sued a 14-y-o girl for having an Autism Speaks parody site.

*I couldnt put quotes around the stuff in this sentence because Autism Speaks never really says these things, but this is what their ads imply. The words I use like "real" and "back to normal" are not based on MY views.


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Rose_in_Winter
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11 Dec 2009, 3:17 pm

Thanks to all who posted. Most of you share my reasons for dislike -- treating Autism as a disease that needs a cure. My husband said to me, "Wouldn't you want to be cured if you could be?" while talking about Autism Speaks and I nearly took his head off. Goodness knows being an Aspie isn't the easiest thing, but I don't need to be CURED! I'm not sick, I just work differently from the standard. The idea that being on the spectrum prevents people from living fulfilling lives and contributing to society makes me sick!

I didn't know about how little of their money goes to Autism research, or how they fund NT-biased projects. Everything I learn about this group infuriates me more. The self-pitying letter from the VP of the group offended me as she seems to denigrate her own daughter's struggle and focus on how she (the VP) feels, instead of seeing her daughter's hard work as a triumph. (She has a low-functioning autistic daughter and an NT daughter.) And no Autistic people on their staff is just wrong. NTs don't know what it's like to have any kind of Autism, so how DARE a group of NTs claim to speak for us?



AnnePande
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12 Dec 2009, 9:47 am

wigglyspider wrote:
They focus only on severely autistic children, and the unhappiness and confusion that can come with them, and don't acknowledge the fact that many autistics grow up to be much happier and/or more successful than that. It is aimed at parents and promotes curing their children and turning them back to normal instead of nurturing them as you would real children and being happy with them how they are.*

They don't have or want anyone autistic on their staff, last I heard.

And they sued a 14-y-o girl for having an Autism Speaks parody site.

*I couldnt put quotes around the stuff in this sentence because Autism Speaks never really says these things, but this is what their ads imply. The words I use like "real" and "back to normal" are not based on MY views.


I think they have said something like "Autism steals your child and leaves an empty shell"...
:x :roll: :eew:



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12 Dec 2009, 10:06 am

It is because they behave less as an entity intending to help people with autism and more as a group of NT bigots that just crave for genocide of anyone with the autism gene...


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12 Dec 2009, 3:05 pm

I don't like Autism Speaks because of their constant negative "woe is me" attitude all the time.

I also don't appreciate how they only view the very severe cases of autism as valid...it's like, if you're a higher functioning autistic or someone with Asperger's Syndrome, then you will not be accepted by them at all because your autism isn't "bad enough".

Autism Speaks does not speak for actual autistic people at all in my opinion. It speaks for parents of autistic children who think that their child having autism is the worst burden in the world and that autism is something that should be "cured". Frankly, I think having that type of melodramatic and negative attitude towards autistic people is judgmental, narrow-minded, and just downright pathetic.

Sure, some people with really severe cases of autism cannot speak for themselves...but there are also PLENTY of high functioning autistics and people with Asperger's Syndrome that can speak for the autistic community. I don't think we as people on the autism spectrum need a bunch of people "speaking" about autism who only think it's a burdening disease that needs to be "cured". Autism Speaks is in my opinion the most judgmental and ignorant autism organization out there.



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13 Dec 2009, 9:22 am

The reasons that I hate Autism Speaks are:

1. They are raising money to do research to find the autism gene, so that it will show up in the mother's womb, therefore the mother will more than likely abort her unborn autistic child.

2. The parents in the video try to force their autistic children to do things that stress them out, and therefore, they ask the camera crew to film the meltdowns, as they have pity parties, that they can't do normal kid things with their autistic children.

3. None of the kids in the video know how to talk. If they do know how to talk, they slur their words.

4. The ugly mother who almost drove off that bridge, with her autistic daughter, but didn't because she has another daughter who is thank God, NT.

5. The people in the video think and feel that we're all a bunch of mentally challenged losers who ruin life for our families.

6. I hate the mother who says negative things, as she changes the diaper of her 5 year old son. She conveys the message that anybody who needs to wear diapers, or similar garments should be wiped off the face of this planet, no matter how disabled or successful they are.

7. I hate the puzzle piece that they use for their logo. I am a person, not a puzzle and I'm really not that hard to figure out. My friends have a very easy time, reading me.

8. They think that autism is a horrible disease that needs to be cured. I'm not diseased, I'm different and I hope that a cure never comes into existance.

9. They call autism this deamon or monster that takes over the child's body and creates an empty shell. If that's the case, than why do I have the strongest personality of everybody that I know. I'm certainly not an empty shell.

10. I hate how they've merged with the Starbucks and Toys R Us chains all acrossed America. They're being Nazi like towards 1 in 150 adults who like a good hot tea or coffee, and to 1 in 150 children who love a brand new toy, every now and again.

These are the 10 reasons that I hate Autism Speaks.

What are the reasons that I love Autism Speaks...gee I can't think of any. I hate them. I hate Jenny McCarthy equally as much.


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13 Dec 2009, 9:39 am

What everybody else said.

I'll add in that I hate how they drive a wedge between NT parents and their autistic children. As an NT parent of an autistic child, what the parents need most is ways to understand and connect with their child, not justification for being driven even further apart. An autistic child whose parents have been educated in how to understand and connect with their child will have a better childhood than the ones portrayed in their videos. In their videos, there is practically a war between parents and children. The whole "fight autism" mindset can turn parents against their children as they think they are going to war against autism but are actually going to war against their children. That can't be a good childhood. And a good childhood and positive relationship with parents is the foundation for a positive adulthood. I'm not saying that you have to have a good childhood to be not miserable as an adult. But I bet it really helps.



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13 Dec 2009, 11:17 am

Quote:
They focus only on severely autistic children, and the unhappiness and confusion that can come with them, and don't acknowledge the fact that many autistics grow up to be much happier and/or more successful than that.


Yes, let's focus on all the autistic people who have to fake being Not Autistic. God forbid we face that ALL children cause confusion and unhappiness from time to time, regardless of what sort of diagnoses they have.

I don't like the assumption that the need to focus less on one type of autism and focus on another. ALL autistic people need positive representation, including those of us who can't speak, live independently, need someone to watch them constantly.

How can we raise our heads high and call ourselves an autism community if we say 'Let's get good representation, but not for
those people.'