Autistic

Congratulations, your partner is autistic!

I knew you could do it, he says.

It seems silly in retrospect how utterly terrified I was.
Except it wasn’t.

The words I feared,
“We do not believe you fit the criteria for autism spectrum disorder,”
Resounded around my ears as I slept.
Potential invalidation, so present
Doubt entered my mind.
I ceased to find comfort in the term.

Autistic.
I am autistic.
I have a lovely piece of paper now saying it’s so.

You know what I want to do now?
I want to rock back and forth and shake my hands and shout
I was already autistic.
I was autistic this whole fucking time.

My head is buzzing as I write these words and the tune is coming to a crescendo
as I think of all the times as a child I stared in the mirror and practiced my smile
and desperately, desperately tried to suppress my flapping arms when I felt unsuppressed joy.

I am not autistic because a piece of paper pronounced me so.
I am not autistic because a doctor determined I fit the guidelines.
I am autistic because I like to touch my own arm hair, because it makes my skin happy,
and because I cover my ears at loud noises and when a pretty noise comes my way I start singing.
I am autistic because the ringing in my ears can only be counteracted by a low hum in my chest.
I am autistic because I like to touch my lovers’ faces, caressing their eyelids and poking foreheads.
I am autistic because I am viscerally human in my own way, in a way that feels and looks other.
And I am other. And I exist in brilliant light.

Mara Passio

Morning is dim with another day’s tears

Hey everyone.

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.

(1) http://autisticadvocacy.org/wp-content/uploads/2016/03/AutismSpeaksFlyer_color_2016.pdf
(2) https://www.autismspeaks.org/advocacy/about-us
(3) http://autisticadvocacy.org/2015/12/statement-on-autism-speaks-board-appointments/

Mara Passio