Edenthiel wrote:
In another aspect of my life there is also a national level organization that sells itself as representing people it does not. They are actually quite similar to Autism Speaks, in fact. Strongly built out PR machine, lots of fundraising, nice salaries and a bit of a problem at the core. Over the last 10-15 years they've garnered a solid reputation for bringing on board one or two people from the "problem" group (those complaining they are being harmed not helped), with much fanfare. Usually within two years those people realize they were nothing but a PR move as they are granted no power and no voice. They move on and eventually are replaced by a new one, bright eyed with optimism that *this* time the organization really wants to be fully inclusive. Charlie Brown, Lucy & the Football.
Autism Speaks will need to do two things before one or two token autistic board members matter.
1.) Enact sweeping changes & use their PR machine to promote them
2.) Apologize once those changes have made a difference.
They need to apologize and pay damages as soon as possible.
A lot more then 4 percent of their spending needs to go helping autistics. Helping autistic families needs to be a means to the goal of helping autistics not the goal.
Instead of allowing them at thier fairs they should be trying to close the Judge Rotenberg Center.
Stop supporting ABA as the "gold standard" of treatments.
Rename the #MSSNG campaign
Better yet forget about the genetics research "rabbit hole".
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Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity
“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman