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i'm conserding sending this letter to autism speaks, and i wanted to get feedback before i do.  should i send it and what kind of changes should i make if any?  (their mission statement is in bold btw) thanks!!
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I have taken the time to look at your mission statement, and as an autistic, I plead you to listen to what I think about the statement.  If Autism Speaks is all about hearing autistics speak and that it’s time to listen to that, you should read this letter carefully.

At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders.

What do you really mean when you mean struggle?  As in everyone is a regular person, then they become afflicted with autism and they struggle to be like everyone else?  Probably so.  We do not struggle with autism as in the sense as we struggle to be normal , but autism causes a hindrance to that, we struggle from oppression that many people inflict on us because we are autistic.

Everyone struggles in life, autistic or not.  It’s just that our struggles in life are much different than most.  Social interaction isn’t a big thing for most of us, but we don’t struggle as much in academic pursuits as most of the rest do.  Social interaction has been placed on a much higher priority in recent years, placed as the highest priority and people who don’t succeed through the social hierarchy are shunned.  The erroneous placing of social interaction as the highest priority can be explained in another article completely.

Here’s a real way you can change the future for autistics (although you probably won’t listen at all to any of this).  You can speak for all the oppression that we suffer through inside society and help us be a unique part of society and appreciate us.  You could have been a civil rights advocate like the NAACP and be a big organization that fights for our rights instead of saying we are diseased and don’t deserve to exist as we like it.  I’ve been autistic since day one, and even though it’s way different that the norm, it’s the only life I know, and I wouldn’t change it.

We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals.

So autism should be treated like cancer?  I’ve heard it before.  Autism is not a disorder, disease or any of that.  It’s a genetic difference, like brown eyes is compared to blue.  Using your logic, I guess all children with brown eyes must be cured because they face hardships of having brown eyes.  Everyone is different than someone else, but they are still human and need to be treated that way.  Autistic genes are just a form of genetic variation, not a genetic defect.  And besides, genetic variation is good for the growth of all humanity; if one set of genes are eliminated, the human race may face dire consequences.

And why is a cure or prevention of autism the only way autistics can live healthy lives?  You ask most autistics, they like who they are and will not desire to be killed or cured just to conform into your narrow definition of what you think is a human being.  Autism Speaks believes that autistics are diseased citizens and should be treated like patients of some terrible affliction until they act a certain way.

Families with autistic children face hardships, but whose families don’t, regardless of if they are autistic or not.  This image conveys that they had a happy go lucky life before they found out that their child was autistic, and portray it like the child had a form of brain cancer.  Autism makes life that much different, but it’s not all tragic hardships and suffering.  Many families devoid of autistic children are severely burdened, while many families with autistic children have minimal hardships.  Don’t make general statements that families will suffer less without autistic children, because it’s false.

Autism Speaks’ version of autism awareness is that we are less than human citizens and that we are defective and do not deserve to be treated equally until the ‘cure’ is found and we are treated with it.  My version is more humane; autism awareness knows that autistics are human beings and need to be treated as such.  Autistics need acceptance in society and not treated as cancer patients that need curing.

Autism Speaks aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis. It is our firm belief that, working together, we will find the missing pieces of the puzzle.

What is this autism community composed of, exactly?  Probably not autistics, since you think they are defective people who cannot speak for themselves.  It’s likely of people who hate autistics and want them eliminated and never to exist.  And from what I hear, your so called community is not going to unite anytime soon.  There is a real autism community, composed of autistics and others that appreciate autistics as human beings, and will fight for our rights to be human.  Why don’t you take a look sometime?

Why is autism a public health crisis?  Why is autism even a public health problem?  Are you implying that we are sick?  I can tell you this; we are not sick, just different.  We act the way we do because that’s the way we were programmed, like non autistics vary in different behaviors, it’s not because they are sick, you would claim, but because they are different.  Why not do that for us?  If everything was applied to this logic, there would be a very narrow definition of a healthy human being that would be one type.  Instead of wasting your time trying to portray us as sick and spending money on ways to kill us, why don’t you try to stop the bird flu that is supposed to be in the United States before the end of the year?

What do you plan to do in the government sector?  Probably deny us our rights to be human beings and treat us as test rats that can be abused since we are diseased citizens according to them.  This is just what Hitler did in the Nazi movement in the years leading up to World War II; they tagged Jews as less than human beings and it led to mass genocide.  Are you going to push prenatal testing as a good thing to eliminate all autistics?  If so, you’re no better than Hitler was with the Jews.

Autism Speaks. It's time to listen.

You don’t speak for autism.  I think it’s time for Autism Speaks to really listen to autistics and see what the autistic life is all about.  Of course, we have problems, just different that everyone else’s.  But don’t call our lives a tragedy because of that.  With the proper nurturing of autistics to feel good about themselves when they are younger, they can grow to be healthy adult autistics that can contribute to society in unique ways and have lives that are far from the tragedy.  Yes, autism speaks and it’s time to listen to them.  Unfortunately, Autism Speaks is trying to oppress these voices and distorted them to further boost their campaign to eliminate us.
This is just my viewpoint, but its so long that they are unlikely to read it all. You could make shorter 'bullet' points, that get your point across quickly.

We have tried to contact NAAR in the past - (now autism speaks) and they never responded.

Amy Wrote:
This is just my viewpoint, but its so long that they are unlikely to read it all. You could make shorter 'bullet' points, that get your point across quickly.


that's probaly a good idea, but i may publish this essay form somewhere.  from what i hear about them, they are unwilling to listen to anybody that does not agree with them.

my big debate in my head was should i slam the origzation in the letter...it may come across as too harsh, but then again, they are very harsh in pushing their false views about autistics in the mainstream.

I thought that your letter was very good, but the bullet points might be good as well.

Quote:
my big debate in my head was should i slam the origzation in the letter...it may come across as too harsh, but then again, they are very harsh in pushing their false views about autistics in the mainstream.


My personal suggestion would be to not slam the organization. Since Aspies are so often portrayed as having severe anger problems, I think that we don't want to sound overly angry in our correspondence and contribute to that stereotype. (Not that I think your letter sounded that way, but it might be good to soften it up just a little bit).

As painful as it may be, I would also recommend thanking them for their time at the end of the letter just to show how polite and reasonable an Aspie can be, and saying something like, "and I look forward to your response," to let them know that you are expecting one, if you would like.

here's my bullet points verison:

a.
- We struggle due to society’s oppression towards autistics, not due to autism itself.
- Everyone struggles in life, not just autistic people.  Our struggles are different, that’s all.
- Instead of defeating autism, why not try to actually create a platform to plead that we are equal.
- We’re not helpless people; we can live satisfying lives without pity from others

b.
- Autism is a genetic variation, not a genetic defect.
- We live healthy lives as autistics; we don't want or need a cure.
- Having an autistic child does not automatically mean more hardships for the family, but the challenges will be different.
- Don’t look at us as problems, we are people.
- You promote autistics as sick and diseased and needing a cure to be human beings, when we really need acceptance.

c.
- There is a community full of autistics and people who support their lifestyle.  Yours isn't it, they promote autistic hate speech, and it isn't united.
- Don't waste your time trying to wipe us out when we are just different like non autistics are different from each other.  And besides, there are real public health crises out there, like the bird flu.
- Your government involvement could lead to further oppression of autistic people, which may lead to a holocaust type situation for autistic people.  Do you really want to be looked at like Hitler was?

d.
- If you really are Autism Speaks, listen to autistics speak, like this one and really listen to what they are really saying.
Thats good :grin:
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