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 — unlike me — don’t 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 it’s hard to hunker down and listen to people who bring a message you don’t want to hear. When I was AS’s age, I couldn’t 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 I’m not alone in this impression, because I’ve 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 autistic’s 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 Speaks’s unending natter about cures, because most of us don’t think of ourselves as sick. Heaven knows, I can’t 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 organization’s money is going, to whom and how it could be allocated more effectively.