7 Things Autistic People Want Autism Speaks To Hear

A list of the most common thoughts expressed by autistic people in regards to the global charity that purports to support, and speak for, autistic people

Please Use, and Support the Use of "Autistic" as Opposed to "With Autism"

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Its not just semantics.

Autistic people have been expressing for quite some time now their preference for the use of the moniker "Autistic" over the qualifier "with autism". They ask that Autism Speaks respect their wish and address them as Autistic. For excellent examples of WHY please read these posts by Neuro-Diversity , Diary of A Goldfish and Days of Whine and Rosé

Realign Your Funding Model

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Autistics want Autism Speaks to focus funding on providing services for the Autistics that are already here, not towards preventing future generations of Autistics from existing. With your already vast global exposure, it would not damage your financials to flip expenses around in 2 key areas. Switch the 4% family services grants gets to the 43% that advertising and media now receive.

We Do Not Break Up Marriages

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Autism Speaks loves to quote an 80% divorce rate within Autism Households. Whether or not that figure is accurate (we could not find supporting data) , autism household marriages more often break up from the stresses of dealing with a society that sees autism portrayed as a burden in large part due to your ad campaigns. Campaigns that are offensive and destructive. It would be much more autism friendly and productive for society as a whole, to portray the positive realities of autism. Then you could focus on using your vast influence to help provide resources for the more challenging aspects. Focusing on only the challenging creates a "You" VS "Us" atmosphere that can drive a couple apart.

We Grow Up

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{Image is meme featuring a black and white photo of a 1950s era woman smiling, with a text bubble that reads " Autism? Not me! That's for children. (children italicised) I grew out of it! }

The image society has of autistic people is limited to the idea of an autistic child. Society still has a notion of autistic adults as either "RainMan" or "Sheldon" because those are among the only examples of autistic adults in main stream media. Please start portraying autistic adults in your public profiles. And while you're at it, start spending some of that funding for services for adults as well!

Pick Me!!! We Want to be Involved In All Levels of Autism Speaks

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We want to be more than just the token autistic in an Autism Speaks walk. We want to self represent in all levels of the largest organisation in the world that purports to be about and for us.

Take a Stance Regarding Dangerous "Cures"

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Thanks in part to the regularly horrific portrayal of autistic life by Autism Speaks, which we understand helps drive donations, so we get WHY you do it, the public's perception is that nothing could be worse than a diagnosis of autism. This in turn has led an increasing number of parents to seek out "alternative" therapies, treatments and "cures". Some of which are potentially deadly. Autism Speaks publicly announcing there IS NO cure, as well as warning parent's about the dangers of specific practices is not just something we ask of you, it is something we IMPLORE of you.

Hear Us

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Autistic People have been attempting, politely and not so politely, to set up a dialogue with Autism Speaks for many years now, but keep coming up against a wall. Create a starting advisory panel made up completely of Autistic people, and make their recommendations public. Follow through on those recommendations. Then create a permanent advisory panel that has regular access to the board of directors and a public presence.

How can anyone purport to be Speak for someone when they refuse to LISTEN to them?

Shall We Continue??

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This is a VERY short list! Please add your own thoughts, questions, and comments for Autism Speaks in below. Hopefully if AS was watching this post, they'll continue through to the comments as well.

Keep the conversation going.