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Mon Apr 6, 2015, 01:41 PM

 

Autism Speaks, But Does it Listen?

http://thescientificparent.org/autism-speaks-but-does-it-listen/

Autism Speaks has been talking for ten years now, without pausing to first listen in any meaningful way to #ActuallyAutistic people. The ongoing hoopla of #AutismSpeaks10, the online birthday party AS tried to throw itself as a prelude to its eighth annual International Autism Awareness Day, reminds me that most people ó unlike me ó donít talk about autism 24/7....

I almost, but not quite, sympathize with the sentiment behind #AutismSpeaks10, an orgy of self-congratulation by the most recognizable and heavily funded organization that purports to help autistics like me and my son. I get that itís hard to hunker down and listen to people who bring a message you donít want to hear. When I was ASís age, I couldnít hear such messages, and when I eventually could, it was only with the support of many neurodiverse allies. By contrast, it seems to me, that AS is purposely sticking its organizational fingers into its institutional ears. I know Iím not alone in this impression, because Iíve been participating in some of the autistic-led online counter campaigns, like #ActuallyAutistic and #HighFunctioningMeans.

I, unlike AS, do not presume to speak for every autisticís most profound area of disagreement with the organization. There are various frustrations, all of which share the common theme that Autism Speaks needs to change its ways. AS needs to show that they are listening to us by acting upon the expertise we keep offering and they keep rejecting.

Some of us focus on legitimate protest of Autism Speaksís unending natter about cures, because most of us donít think of ourselves as sick. Heaven knows, I canít hold onto a shred of self-esteem, much less engender self-confidence in my treasured son, if I relentlessly look at us through a lens of pathology. What concerns me most in my various roles, however, is not as much the names AS calls us, as where the organizationís money is going, to whom and how it could be allocated more effectively.

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Reply Autism Speaks, But Does it Listen? (Original post)
KamaAina Apr 2015 OP
Demeter Apr 2015 #1
SheilaT Apr 2015 #2

Response to KamaAina (Original post)

Mon Apr 6, 2015, 02:39 PM

1. I could wirte a book from this...every sentence a chapter

 

thanks for the post. I don't do activism, so it's good to get a snapshot now and then

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Response to KamaAina (Original post)

Tue Apr 7, 2015, 01:55 PM

2. What little I know about that group

 

and I suppose I should learn a bit more about them but I have no interest in doing so, they are totally irrelevant to me.

Perhaps if I had a severely autistic child, rather than one with Asperger's, I'd be desperate for a cure. But the older my son gets (he's now 32) the more I cherish his differences. He doesn't need to be cured of his Asperger's any more than I need to be cured of my love of reading science fiction.

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