Autism Speaks Silenced on Twitter – 10 years in the making


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When Autism Speaks reached out through their various social networks with their shiny new tag #AutismSpeaks10 they, like others who think they are unreachable somehow didn’t foresee what was to come.

(Edited to add: They changed tags it seems, so please now see < #AutismChampions >

I guess if they had any Autistic people working for them they would have had a better idea how things might go. We have wonderful big picture thinking 🙂

We can use that big picture thinking and see throughout history what happens when people are continuously silenced and oppressed. We can see what happens when they don’t even feel part of the human race, but know they are and want to be.

We rise up.

So Autism Speaks is celebrating their 10th year on Wednesday February 25th and they asked for anyone who’d like to share how Autism Speaks has helped them to use the hashtag #AutismSpeaks10.

In that hashtag a spark was waiting to grow like a wildfire.

We’re rising up.

So not only have we been sharing, but we’ve been taking the whole damn tag over and we added some tags of our own, you know, to fine point the issue 🙂

> #ActuallyAutistic (opens live stream on twitter in new page)
> #IAmTheEndUser (opens live stream on twitter in new page)

So in I went:

I was polite and thanked them next:

Things went along okay but then I wasn’t careful enough with my repeating of words. It’s important to stay open to learning and be open to correction. Gentle correction is great, if it can happen that way. It mostly doesn’t, I’m guessing.

Since I was live and active on this I was right there when Steve Silberman tweeted this and then retweeted my response.

Lifted up from the various exchanges I was feeling really victorious.

But what goes up must come down and there was some bullying. With the amount of noise I was making it was in the back of my mind as something that could happen, Even still, I did struggle for a while. But not that long, I’ve got such great support online now and this gem from a friend.

And back on track I went, first with some love…

then back to making hard points, which a lot agreed with:

and also decided to make a phone call, up the signal:

After the call I saw a tweet that reminded me of one of the many reasons Autistic persons and our families/friends/supports are so upset with Autism Speaks. They have a horrible history of dehumanising and exploiting us in their documentaries. The ableist language and the fear mongering is too much sometimes. I found a way to work with that:

Almost immediately ideas for a graphic started to come to mind.

Pesky creative Autism 😉

I’m really grateful for this amazing and yes pesky Autistic brain though. Would not trade it for another, would not want it cured or changed it any way.

Feel free to use and share this graphic. Would love a link back, or a comment letting me know where it may travel, but if not the link is on it so that’s good too.

What a wonderfully empowering experience this has been. Can’t wait to see where all the hard work takes us!! Well done everyone!

Great write-up on BuzzFeed:
[ Autistic People Spark Twitter Fight Against Autism Speaks ]

Sounding the alarm on #AutismSpeaks10

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4 thoughts on “Autism Speaks Silenced on Twitter – 10 years in the making

  1. Pingback: The Importance of Autistic People Seeing Reflections of Ourselves in Media – Sesame Street, Julia and Me | Echoes of Mermaids

  2. Pingback: To Be Me – Autism Acceptance, Autistic Pride. | Echoes of Mermaids

  3. Rebekah, it is not a smear campaign when it is fact. Educate yourself. That is a good place to start. Autistic adults are not the enemy. They are who your child will someday become. Beautiful amazing human beings who are perfectly capable and have every right to speak for themselves. The ones I want my two autistic children to learn from. (I live in WA State so I know for a fact Autism speaks is NOT the only recommended organization. I started there as well but never felt right about the way my children were portrayed there, and looked for other more accepting resources.)

    • Hi Ami – thanks so much for visiting and taking the time to comment and help educate Rebekah. She’s got things a bit sideways which is why we have to keep speaking up even more.

      Great link! I hope that as they grow your wonderful Spectrum kids will only find more and more acceptance. That’s why I am doing this ultimately. I’m almost 46, though I can and do benefit from things changing I still mostly have to struggle against it. I want Spectrum kids to not have to know the feeling of it mostly being a struggle.

      Hope to see you again 🙂

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