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Dear Autism Speaks,

I am an individual on the Autistic Spectrum and I do not suffer from my Asperger's, I embrace it; my family does not suffer either, because they love me as I am.

I have a few problems with your organization, that, from others with Asperger's, Autism and family members of those with these syndromes, also find to be problems. These are only a few complaints my friends and I have come up with:

1. You have no Board of Directors members on the Autistic Spectrum. Sure, some of your members may have a child on the spectrum, but it is not the same. Unless you are on the spectrum, you have no idea how to properly help those who are on the spectrum.
2. In your mission, it says that you are working toward a cure for Autism, yet on the "What is Autism" page of your site, you say that many studies point to Autism being genetic. How are you going to cure something that is genetic? Until we have the ability to isolate the exact genes that cause Autism and edit them, there will be no way to cure it. Treatment of symptoms it possible, and for many families with a more severely affected child, they are welcome, but for most of us, there is no point in a "cure."
3. You have talked about how much money it can take to raise a child with Autism, but most of your money goes to salaries for higher-ups, advertising and research on Autism! Why not help out those families that don't have the money to raise a child on the spectrum? Many families could use the help, whether to get a suitable IEP for their child in mainstream school, or assistance in getting their child into a specialized school that will help them later in life.
4. Your ads. The ads you put out are highly offensive to those of us on the spectrum!! You say horrible things about Autism like "Autism has stolen my child," but you never go into the positives about Autism!! In no video ad have you mentioned Autistic Savants, or how Autism can bring families together, not push them apart!!

Before you go hunting for a cure, or a prevention method, or a raise for your higher-ups think about these issues.

Thank you,

Sarah

Did they deleteyour post for representing a different opinion from their own yet?

Bravo!

Give it about 20 minutes then they'll probably delete it!

_________________
I have HFA, ADHD, OCD & Tourette syndrome. I love animals, especially my bunnies and hamster. I skate in a roller derby team (but I'll try not to bite )

Then ofcourse a whole bunch of aspies could take it upon themselves to ensure that their view is chalkenged daily.

I don't know that much about Autism Speaks but from your post and others I've seen here about it I doubt they'll listen.

The organization does not cater to represent those of us who have adapted to the condition and don't see our experience of autism as disability. They cater to those that see the negative aspects of autism, that want a more positive outcome, whether it is prevention, a cure, intervention, or treatment, and to create a better awarenesss of the condition for the public.

Autism Speaks exists because there are many people, mostly concerned parents, families, or friends, of Autistic people that have a more disabling condition, in the general public, that want to see the things in the Autism Speaks mission accomplished.

They are the largest organization that receives funding for Autism, but there are many other organizations that fund the same research. They provide guidelines for research, but the people that do the research seek their funding from many other sources, also.

They recently helped fund research that has led to a screening checklist for Autism in children age 1 or lower. It is seen as a breakthrough, because it allows for early intervention that may provide the child a greater chance to fulfill their potential with the condition of Autism.

There are no screening tests for Aspergers in early childhood, because Aspergers not cause the same significant developmental delays in early childhood seen in other areas of the Autism Spectrum.

However, they are funding research to try to find ways to improve the life for Adults with Autism.

The kind of input you provide to the organization has been evidenced to have an effect on the organization, because their ads are no longer as negative as they were before. However their purpose is to generate funding to assist with research in helping those that have difficulties with Autism, so it is not likely they are going to paint the condition as something inherently desirable to have. That's not unusual other organizations that fund raise for disabilities do the same thing.

Their salaries are not out of sync with other large fund raising organizations. The people with the skills to run these type of organizations are in demand and are paid what the market supports. It would be nice if people were willing to work in these type of large fundraising organizations for less money, but unfortunately as a whole that is the way it is everywhere.

A high functioning Autistic Author recently joined the organization to contribute input, so that seems to be a step in the right direction to gain focus on that area of Autism.

The general public wants the research on Autism, are willing to fund it, and would fund it through a different organization if Autism Speaks did not exist.

Here is a list of their research guidelines for 2011, for those researchers seeking funding:

I doubt their mission of curing autism is real, but should really state that they wish to control media and public perception of autism related issues. Testing of autistic potential by US military and such, would be considerable

Cancer charities, heart charities etc etc all have similar mission statements, but in actuality very little improvement in these degenerative conditions happens. But the good folks at home know 'something is being done' (thanks government!)

In fact, the stats seem to show rising levels in disorders

They just want to cure us and abort us. They hate us.

If you're going to attack an organization (one that I strongly believe thinks that it's helping people with ASDs), at least get your facts right. No one's going to listen to you if you attack them for things they don't even do wrong.