Written by:Project Enigma
Originally posted HERE
There’s currently an ongoing campaign on boycotting the infamous organization Autism Speaks (not linking by purpose).
The boycott is organized in part through the #BoycottAutismSpeaks Twitter hash tag, as well as a flash blog running yesterday and today (Jul 17, 2015). I understand Flash Blogging as specific posts from people in their own blogs, as well as other submissions, being collected on the Flash Blog site maintained by Boycott Autism Speaks organizers.
You‘ll find many posts there already explaining on the facts about Autism Speaks, so I‘ll not repeat what has been said there. Just check the other articles for that. Instead I‘ll try a personal take.
What helped me for discovering being autistic and how so was seeing diverse voices of actually autistic people, sharing information from an autistic perspective, as well as sharing personal experiences, views and so on. I learned that being autistic is a spectrum. That it is a disability, and at the same time it’s a neurological variant that „just is“, that has no different value from other neurological variants, including being neurotypical. On top, part of the disability that can be involved in being autistic is caused not just by per se impairments inherent by how someone is autistic. Rather it’s often a mismatch between neurotypical norms and expectations and autistic people and our needs. This can involve a need to meet us in-between in communication style, offering supports for the sensory needs autistic people often have, often some kinds of Augmentative and Alternative Communication (AAC), from informal (such as fully accepting social media, email etc. as valid road of communication rather than valuing face-to-face or phoning over written) to formal (which I can‘t explain in detail, as I don‘t use them; see this video by Amethyst Schaber/Ask an Autistic including more links in the description section) and many more such mismatches or sometimes unmatched needs for adjustments.
What helped me is that I saw being autistic being displayed in an accepting manner, not as something akin to the end of the world.
Now, Autism Speaks propagates just the latter. (Please see the Flash Blog for factual details.) They portrait having an autistic child as a catastrophy happening to neurotypical parents (or grandparents, as the founders are). They fund research on eliminating autism more than they fund supports for autistic people and families or other people supporting them. They rather have research on prevention and elimination of autism rather than genuine research on how to improve life of autistics.
They also use „functioning labels“, which are problematic and inappropriate on their own, in political ways against autistic people. Either you‘re too „high functioning“ in their view to be autistic „enough“ to speak about autistic issues, or you‘re too „low functioning“ and thus are denied agency, so they speak over you instead of with you, or just listening.
They currently include no autistic people in decision making structures at all. The only autistic who was involved resigned. (Again, see links in other Flash Blog entries for evidence.)
And no, Autism just cannot speak. Autistic people can, and should be listened to rather than talked over.
So this is a short, more personal rather than factual, account on why I myself boycott Autism Speaks and why I ask others to do so too. If you have money to give and want to support autistic people, surely don‘t give to Autism Speaks. You might rather consider autistic-led organizations like the Autistic Self Advocacy Network (ASAN) and other similarly orgs by and for autistics.
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