Saturday, December 21, 2013

Autism Speaks and Damage Control

It seems that after much backlash from the autistic community, its allies and organizations that support them, Autism Speaks is doing a little damage control.

They have started a “new” series on their website called “In Our Own words, Living On The Spectrum”.
The events leading up to this effort makes it extremely suspicious and leaves one wondering what the motive behind it may be,
Let me explain.
Autism Speaks has long been rejected by the autistic community for it’s refusal to listen to and include autistic voices in their efforts to advocate for autism. To date, Autism Speaks has not had one autistic board member or autistic person in any decision making role for their “charity”. While they have had a few “token” autistic people write for them, make videos for them or even employed a few, they have yet to have an autistic person to assume any role that would allow for autistic people to be properly represented by them.
They have further been condemned by the autistic community due to their mission to research for a cure and their consistent use of language that includes words like disease, epidemic, crisis, burden, lost, kidnapped to represent what it’s like to be or have an autistic child.
Furthermore, Autism Speaks only puts 4% of the funds they raise back into the community for family services in the form of grants that are hard to access. 
The timeline that leads up to what I feel is purely damage control on Autism Speaks part is as follows:
November 11,2013
Suzanne Wright, co-founder of Autism Speaks, Op’d an opinion article titled  Autism Speaks to Washington- A Call To Action.. In this opinion piece,Ms. Wright continued to use the same fear mongering rhetoric that Autism Speaks has been chided for again and again.
This one opinion article sparked off a chain of events that Autism Speaks should not have ignored. But, they did
Autism speaks received 100’s upon 100’s of responses to this OP on their website from autistic advocates, their allies and organizations that support them.
You can read those comments for yourself because they are still there.
Autism Speaks did not respond.
November 12,2013
The Autistic Self Advocacy Network (ASAN) released THIS STATEMENT in response to Suzanne Wright’s OP.
Autism Speak did not respond.
November 13, 2013
The Autism Women’s Network (AWN) released THIS STATEMENT
John Elder Robison,an autistic self advocate, resigned his roles at Autism Speaks, you can read his own words as to why HERE
Autism Speaks did not respond.
November 14, 2013
The Autism Society of American (ASA) released THIS STATEMENT in response to Autism Speaks.
Laura Shumaker, long time supporter of Autism Speaks who has had many of her writings published on their blog expressed her disappointment in the organization HERE.
Autism Speaks did not respond.
November 16,2013
The Arc published an OPEN LETTER to Suzanne Wright expressing their disapproval.
Autism Speaks did not respond.
November 18,2013
Cynthia Kim, autistic self advocate, organized a Flash Blog rightly named “This is Autism" in response to Ms. Wright’s repeated use of the line "This is Autism" in her OP. The flash blog went on for one day and received 245 submissions from autistic adults, children and parents to autistic children. These posts were tweeted, posted on facebook, posted Autism Speaks Facebook page, reblogged and spread all over the internet.
Autism Speaks did not respond.
At no time did Autism Speaks publicly acknowledge or speak on this mass outrage it caused within the autistic community. Not even once..
December 4, 2013
Autism Speaks starts a new initiative ‘In our own Words, Living On the spectrum”, and the first post was “I’m Here For You”  written by Kerry Magro, autistic adult and Social Media coordinator for Autism Speaks (will explain that role in a minute).
Autism Speaks states “This post starts a new initiative on our site called “In Our Own Words: Living on the Spectrum” which highlights the experiences of individuals with autism.”
You are probably thinking it is fantastic that they have an autistic individual working for them right? Well no,not really. It APPEARS to be a GOOD thing. It LOOKS good. But, it seems this is more for damage control.
So, this is the response Autism Speaks wants to send out to all the negative feedback they have been receiving. It seems they are using Kerry just like they used JER as their token autistic person. You know, someone they can push up to the front lines and say “Hey, look we do INCLUDE autistic voices!”
Ha! No, not really Autism Speaks, we know what the title Social Media Coordinator means.. Kerry wrote about it on his Linked In account:
"To assist in the daily management of various online communities that Autism Speaks is involved with, primarily focusing on driving conversation and engaging the “community.” In addition, establish a priority for creating and maintaining AS’ social media presence through Facebook, Twitter, and other social media methods and outlets in order to help cultivate and build a base of supporters"
We are very aware that this still means you have not ONE autistic person that holds a decision making position in your organization.
This is damage control
This is obvious.

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