I’m filled with so much frustration over the way things are going for me lately that all of my carefully built filters are burning off. I am finding it more and more difficult to keep quiet about the things others do that hinder progress, or create barriers. I wanted to write to you about it today, but your flames are too hot. Emotions are burning the paper upon which my mind writes.
This is an experience that others don’t often see – how Autism manifests inside me. I can write about it every day, and speak about it all over the world, but it falls to deaf ears. I don’t jump, or chew, or moan, or sway uncontrollably. Some people with autism do all of those things, some don’t. In that image of Autism intelligence is overlooked in those who jump, while Autism is invisible in those who don’t.
Today I got a letter from someone offering a special diet to help me. A few weeks ago it was a supplement. My email box is filled with offers for vitamins, drinks, foods, diets, even chemicals that will “ease my pain” or “cure me of the scary things that stop you from being truly great.” (Those are real quotes from emails).
Am I on some proverbial canyon edge of success that is impassable because I am tainted with Autism? What will your pills and diets do?
I wrote about being stuck between countries and how I am not yet able to be a Canadian but feeling like I no longer matter as an American. But that is not the only place I feel stuck in the middle. There is a divide in the Autism community between the speaking and non-speaking communities. Low IQ and low-functioning are inexplicably linked to non-speaking Autistic people, despite their efforts to prove otherwise. How many nonspeaking authors, advocates, bloggers, and presenters must there be before we see the grievous error in linking low IQ with non-speaking? But the problem isn’t just in the NT world, the stereotyping comes from the speaking Autistic world too. I read comments daily by angry people with Asperger’s who hate being called Autistic because they are intelligent and function independently. This completely baffled me, until today.
The reason the divide exists is because the narrative of the Autism experience is controlled by non-Autistic, sensation seeking publishing houses, news reporters, and other professionals who see only the conflict. They place the stories of Autistic people that they think tugs at the heart strings, and places an NT kid as the hero.
- The lonely Autistic boy who eats alone until an NT kid sits with him.
- The lonely Autistic boy who can’t get a date until an NT kid invites him to prom.
- The lonely Autistic boy who is given the football and told to run.
- The lonely Autistic boy who is marveled at because he can recite pi to the 1000th place.
- The lonely Autistic boy who can play Chopin at age 8 but was ignored until he was discovered by an NT run talkshow.
See a pattern? Yes, they are usually boys, because that is what people like Simon Baron-Cohen want us to think (and if not male, than having an “extreme male brain”) . They are usually depicted as lonely, because lonely sells, and they are usually rescued by an NT, because everyone wants recognition.
Tell me, how many people who rescue Autistic people would choose to live with them?
I am not discounting the genuine NT people who work tirelessly to provide opportunity for people with Autism. I know many of those people. But I also know that once a badge is pinned on the lapel, there is nothing required of the person to keep it. Join a committee, run in a 5K, accept a seat on an advisory board, but don’t touch Autistic people outside the photo op.
This narrative is so invasive that many of my fellow speaking Autistics have bought into it. They yell at me for being positive about my Autism, wallowing in their own tragedy, as they hear the same story every day that we are not wanted. As the camera pans to my non-speaking friends, the negative dialogue is voiced over, and their achievements, and intelligence, are left completely out.
Only you, Phoenix, know how much energy it takes to fight the constant criticism I receive for being proudly Autistic. Criticism from both the Autistic and NT world. What an odd dissonance.
And though I am weary, and though I am breaking inside and out, I refuse to feel sorry for myself.
I refuse to accept the pop-culture, pain sells narrative and I reject any criticism that my Autism is not Autistic enough, or male enough, or too verbal. Last I checked I live alone, travel alone, eat alone, and sleep alone. No one lives with my autism. Not one of my critics has lived with Phoenix.
I refuse to stop fighting for my non-speaking friends, or female autistics who are marginalized by this narrative. It is time for Autistic people to take over our own stories without apologizing that it isn’t sad enough to sell on prime time news.
But most of all, I refuse to be anything but me. Loud. Autistic. Female. Proud.