I want to talk to you today, as an autistic person, about Autism Speaks. Specifically, why I would request you give no support to them, and that you do not “light it up blue.” I will provide multiple links, mainly from the Autistic Self Advocacy Network, which I view as counterpoint in terms of nonprofits. If you take nothing else from this, please look into the Autistic Self Advocacy Network and see what they are doing for and with autistic individuals.
What I would like to start with, is that Autism Speaks is hyper-focused on “preventing” autism. I take issue with this, not only as an autistic person, but as a person who is generally anti-eugenics. Autism Speaks puts the majority of their research funds towards causation and prevention, including, potentially, prenatal testing.(1) In addition, they support “behavioral health treatments” (2) which generally means Applied Behavior Analysis, or ABA. This type of treatment has been anecdotally shown to cause trauma in many autistic individuals, as the basic function of ABA is to punish “autistic” behaviors and reward “neurotypical” behaviors. An example of this would be to punish a child for hand-flapping or stimming, which is a natural behavioral response to overstimulation or strong emotion, in autistics most commonly, but it occurs in non-autistics as well.
Autism Speaks, in addition, refused for 10 years, despite intense pressure, to appoint any autistic individuals to their Board of Directors.(3) They have very recently caved to the pressure and appointed two autistic individuals, but this does not by far undo the damage they have done, or continue to do, by presenting autistic individuals as burdens on society.(1,3)
I have received the response before that I am a “high functioning” autistic, and therefore do not speak for “low functioning” autistics. I would like first to assure you that, if functioning levels were a useful conversation to have (which they are not), I would by no means be considered “high functioning.” I get sensory overload; I get meltdowns where I beat myself with my fists; I sometimes go non-verbal. I am all of the things that make someone a “low functioning” autistic. Second, I would like to ask you, is a “high functioning” autistic less appropriate to speak for “low functioning” autistics than someone not autistic? I see a failure in logic here. Caretakers understand what it is like to be a caretaker. Not what it is like to be the one cared for. Please do not be so presumptuous as to think because you know us or because you have studied us that you know what it is like to be us.
Do listen to autistics.
Do not support Autism Speaks
Do not light it up blue.