My Autism Does, in Part, Define Me (and That’s How I Like It)

In response to some of my work at the Stanford Daily, I’ve received some criticism from a certain person, a brother of a person with autism (his brother’s preferred identification), and son to a board member of Autism Speaks, who used to work for Cure Autism Now (I kid you not, that used to be an actual organization).

Most of the criticism centers around one main points: that because I am a speaking, high achieving Autistic who passes as Allistic, I cannot speak for the Autistic community, because I’m not all that similar to the rest of Autistic community. It was not said overtly, but rather more subtly, and I had to read his text and deconstruct it to make sure I was understanding it correctly.

I will address that later, but in light of the fact that yesterday was Autism Pride Day, and want to focus on another problem I saw in his piece that deals with issues of openness and pride. (Note: I was so perturbed by Emma Stone and Andrew Garfield’s bullshit attempt at “activism” that I posted about that yesterday.)

From his piece, “Another argument is that Autism Speaks has no representatives with autism on any senior or advisory board. However, there are individuals with autism on the Family Services Committee (where they can have the most direct impact on the lives of those on the Autism Spectrum and the families), as well as the many others involved within the organization. The Autism Speaks website does not state in these contributors’ descriptions that they have autism, since autism does not define these individuals or their contributions to their respective committees or positions. In addition, the Board of Directors is made up mostly of family members of individuals with autism, who see the challenges of those on the Spectrum firsthand every day and work hard to fulfill their goal of changing the future for all those affected by autism.”

First, let take care of logistics before we get to the center of this doozy. I never said that were no Autistics on any of Autism Speaks’ senior or advisory boards–I said there were no open Autistics on their senior or advisory boards after the departure of the only openly Autistic any of their boards ever, John Elder Robison. This might seem inconsequential, but it makes a real difference. In the context of any advocacy organization, it’s not just enough to have members of the minority groups in leadership positions. It’s important to have open representation, so that community members can see successful images of themselves and possibility models to identify with. That doesn’t mean I think that Autistic members (or members with autism) should be open publicly, if they don’t want to, but rather that Autism Speaks should make an effort as an organization to seek out at least some Autistics who are open publicly. I don’t care that family of Autistics (or people with autism) are on the board, I care that my community is fairly represented on the boards of an organization that is supposedly helping me.

Next, I’m not afflicted by autism. No one is afflicted by autism. Autism is a neurotype, a term used to describe a collection of neurologies that have similar characteristics. It is not a disease. It is not a disorder. And it is not something from which we suffer, from which we are plagued, or by which we are afflicted.

Now, for the heart of the issue. Quoting again from his op-ed, “The Autism Speaks website does not state in these contributors’ descriptions that they have autism, since autism does not define these individuals or their contributions to their respective committees or positions.”

From this statement, it is not clear if the decision not to openly state that these members are people with autism (their apparent preferred term) is their own or that of Autism Speaks. But either way, it is a shame that Autism Speaks and the board members with autism feel that their Autism does not and should not define their contributions to the board.

To be honest, I’m confused how their autism doesn’t define, or at least greatly influence, their contributions. I mean, isn’t that the point? They are people with autism working for a supposed autism advocacy organization on a committee that helps families with Autistic individuals. It should seem as if their contributions should be seem as contributions by people with autism, and thus more important and relevant to the conversation, because they belong to the marginalized group themselves.

This touches on the issue of internalized ableism, and before I go there, I want to emphatically state: I support Autistics, and I support their right to self-identification, and their right to their opinions, and free speech. I do, however, think that interrogating the potentially for internalized ableism is important.

The bottom line is that if they wanted to, they could openly identify as people with autism. John Elder Robison did, and I’m sure they could as well.

But since the dawn of autism research and awareness, Autism has been viewed as a problem. It has been viewed as shameful. It has been viewed as something that should be mitigated and fixed. And rather than combat that opinion, Autism Speaks has further entrenched it for many Autistics, and the general community.

Again, I don’t want to criticize the individuals and their decisions. Rather, I want to criticize Autism Speaks for creating an environment where many Autistics are not proud to say that autism is a defining factor of their life, let alone a part of their life.

I am queer, trans, and disabled. I’m white, I’m Sicilian-American, and I’m quatrilingual. I hate the color orange, I can’t feel cold, and light touch, without warning, can be overwhelming. I’ve worked or volunteered at an Aquarium for 8 years, I feel a stronger connection with red phalaropes than I do with most humans, and I rarely, if ever, identify as a human any more. I love soccer, I think Brazil is awesome, and I love that I can draw a near perfect map of Europe, including listing major cities, completely from memory. I love that my world is so different from those around me, that I can feel and experience things more deeply and more creatively, and that I have the ability to share that with others, so they can broaden their perspectives.

An opened, rainbow water-colored hand with rainbow marker drawings across it. Rainbow colored background. Beneath the hand, it reads "We are who we 'AUT' to be."
An opened, rainbow water-colored hand with rainbow marker drawings across it. Rainbow colored background. Beneath the hand, it reads “We are who we ‘AUT’ to be.”

On (the day after) Autistic Pride Day, I want to claim these, and all of my other identities, including being Autistic. I want to help make a world where Autistics can communicate that they are Autistic with pride, without fear of discrimination, and without feeling that they should not let their autism be a major part of their lives.

I am Autistic, and my Autism does, in large part, define my life. Like everyone, I’m not just one thing. I’m the intersection of many things. And if I were not Autistic, my life would be inconceivably different.

I’m not just proud that I am Autistic, I am happy and love that I am Autistic. I am happy that I sense the world around me so profoundly, that light touch, when cultivated with consent, can make me feel so ineffably high. I can’t imagine a life where the number four and it’s multiples didn’t make me feel giddy, or where orange didn’t burn my eyes. And despite the challenges my color sensitivities and many other differences present, I would not want my life to be any other way.

I am Autistic, and Autism is not the only part of my life that defines me, but it is one of them, and it is one that I am especially proud of.

To be honest, I wouldn’t want to live my life any other way.


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