Alpha Xi Delta should reconsider philanthropy

By Ely C.
Class of 2018

An open letter to Alpha Xi Delta:

Every time I disclose the most fundamental aspect of my identity, people are shocked.

“But you’re a college student!”

“You’re not even in career and community studies!”

“You seem normal! I mean, mostly… definitely not autistic.”

I’m sick of it. We, the autistic community, are sick of it, and we’re sick of well-meaning yet ignorant folks perpetuating these misconceptions.

Your philanthropy, Autism Speaks — an autism advocacy organization dedicated to “promoting solutions” for people with autism and their families, according to its website — is awful.

Let’s ignore the ethical implications of its stances for now and focus on the way it spends funding. Only 3 percent of the funding goes to family services, according to the Autism Self Advocacy Network.

Alpha Xi Delta raises money for Autism Speaks. (Flickr)

Where does the rest go? Well, beyond the usual nonprofit spending on advertising, fundraising and lobbying, 32 percent of its funding goes to researching a “solution” to and the “prevention” of autism, according to ASAN.

Why does that bother us so much? Alpha Xi Delta’s website says autism affects behavior and both verbal and nonverbal communication, but it omits that autism also affects sensory perception, the way we think and even our movements.

Think about this for a moment — it affects both the ways we perceive and interact with the world. It affects our entire sense of self. As Jim Sinclair, an autistic activist who was nonverbal until the age of 12, writes, “There’s no normal child hidden behind the autism. Autism is a way of being.”

When you say you want to find a cure, solution or way to prevent autism, you are saying you don’t want us to exist.

I have a question: When you plaster flyers around campus that promote an organization that released “Autism Every Day ” — a documentary that includes then-Executive Vice President Alison Tepper Singer admitting she fantasized about driving herself and her autistic daughter off of the George Washington Bridge, but the only thing stopping her was her non-autistic child — does it even occur to you that we’re here, too?

You’re the ones who supposedly possess a superior theory of mind, empathy and communicative abilities. How do you think we feel knowing that to you, our existence is a tragedy that needs to be rectified, and seeing the evidence all over campus?

I know what you’re about to say: This isn’t about the autistic people like you who are “high-functioning” enough to go to college. This is about the kids who bang their heads against walls, can’t speak, “can’t tie their shoes and aren’t toilet trained at 8” as one woman I interacted with put it.

I’ll let you in on my biggest secret: I am that kid.

I had episodes of incontinence into my teenage years. I still have episodes of involuntary muteness. I can’t tell my left from my right. I spend all day putting my energy into passing as “normal,” and it drains me so much that I have to sit in a dark room humming and rocking back and forth for upwards of an hour everyday to center myself.

There have been days where I’ve been catatonic and couldn’t even move from my bed. Because of this, I’ve withdrawn, failed and taken incompletes in classes that I loved.

And you know what? I don’t want to be cured. I love myself, and that — at a very fundamental level — means I love being autistic. I can’t imagine who I’d be without autism.

Without it, I wouldn’t be a member of the wonderful autistic community. I wouldn’t be able to sit still for hours in awe, watching the trees’ shadows shift with the sun. Contrary to what supposed experts say, I don’t think I would have the same empathy for the misunderstood and marginalized. I wouldn’t be me.

Autism speaks — no, autistics speak, type, point and scream, but you don’t listen. We found our own organizations — ASAN, Autism Network International and Autism Women’s Network — yet you choose to support the one that wants us erased.

Please, before you “speak for us,” listen to us.

1 Comment on Alpha Xi Delta should reconsider philanthropy

  1. Great for you that you can write an article like this. Great for you that you that your version of autism is so light that you have time and ability to fret over about the organization that best represents ASD people rather than fight the day to day battle that some folks with ASD face just to get through the day and to deal with a world that is not easy for them to understand or survive in. Autism is a fundamental component of my son’s existence and he is a great person in part because of it
    However, I’m certain that if he could be offered a pill that could simply enable him to be able to communicate at the level that you can…to live a life where concerns at the level that you have expressed are as high in his hierarchy of concerns and challenges as they are apparently to you he would take it in an instant. You don’t speak for him or for the millions of other children and adults with ASD who need help and indeed a “cure” for the symptoms of ASD that are simply debilitating. You do them a disservice with articles like this that those seeking to pull funding from important programs will latch on to. I Can pick nits with Autism Speaks too but they are effective in getting political leaders to move in ways that may someday let my son speak just like you can so he wont have to scream or act out or use the painfully frustrating process of a touch board to be heard or that otherwise will help him live the kind of a life where which organization speaks for him is a meaningful concern to him..There are debilitating conditions associated with ASD that can and should be cured. Wanting to cure those conditions that are preventing grant every child or adult with ASD the core life capabilities that folks with your version of ASD were born with is not erasing them or you. It’s about enabling them to do things in life that you apparently take for granted and its very clear that you don’t speak for them whatever organization you are part of.

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