Neurodiversity

Neurodiversity, Self-Determination, and the Magic Pill

Every now and then, I get caught up in the whole question of a cure for autism.

It’s not that I believe that a cure is possible.  I don’t.  How can you cure who I am and leave me whole?  How can you isolate something called “autism” when it pervades every part of me?  And it’s not that I would want to be cured were it even possible.  I wouldn’t. I like myself just fine.  What I don’t like are the loud, insistent voices that tell me I’m not fine.

What hooks me into the discussion about a cure is the accusation that we in the neurodiversity movement, by criticizing the overriding focus on a cure, are telling people what’s best for their autistic children, and that we’re taking away free choice.  After all, people say, what would be so bad about having a cure?  You could choose to take it or not.  I’m absolutely committed to the principle of self-determination for every person on the planet, so the accusation that I might be compromising that principle gives me pause and makes me examine my thinking.

What would be the consequences of a magic pill to cure autism?  Certainly, some people could choose to take it, and I’m all for free choice.  But free choice assumes a neutral environment in which there is no pressure to make one choice or the other.  We don’t have a neutral environment.  We have an environment in which professionals, teachers, lay people, and well-funded organizations tell us that we are impaired, broken, sick, diseased, tragic, disordered burdens on those we love.  They say that we don’t know how to love, that we can’t speak for ourselves, and that our lives aren’t of worth equal to the lives of others.

Given this environment, no matter what our place on the spectrum, how long would it be until you or I would be pressured to take “the cure”?  How long would it be before parents were pressured to give their autistic children “the cure”?  How long would it be before any autistic person, self-injuring or not, verbal or not, intellectually disabled or not, were pressured to take “the cure”?  In the world as currently constituted, it wouldn’t be long at all.

And what might be the consequences of refusal?  What might happen to a parent who refused to cure his or her child, especially if that child had been deemed “low-functioning”?  There are people who believe it is child abuse to bring a disabled child into this world.  What might they think of a parent who made a free-willed choice not to give the cure to his or her self-injuring child?  These are the questions that give me pause.

I have realized of late, and to my great dismay, that all of the things I’ve taken pride in all my life—my intense focus, my seriousness, my blunt honesty, my rejection of social hypocrisy, my innocence, my insistence that people follow rules, my passion for fairness, my huge vocabulary, my early reading ability, my uniqueness, my acute sensitivity, my love of patterns, my nearly photographic memory—are now all evidence of a disorder.  Does anyone really believe that it’s just our so-called “low-functioning” fellow travellers who might be pressured to be cured?  It’s not—not when the pressure to medicate children all along the spectrum in order to render them fit for school and life is reaching dangerous proportions.  The definition for what is “normal” is getting more narrow every day, and we autistics don’t fit, no matter where on the spectrum we find ourselves.  I simply can’t separate myself from anyone on the spectrum and say that perhaps they should be cured and I shouldn’t.  Until everyone on the spectrum has full self-determination in an environment in which free choice is a real possibility, the choices get narrower, not wider.

People say that those of us in the neurodiversity movement are telling people how to treat their kids.  We neurodiversity proponents are too diverse a group for me to be able to speak for each and every one of us, so I will speak for myself and for others I know well:  We are fighting for an environment in which parents and their autistic children can make free-willed, empowering choices.  We’re fighting for the rights of everyone on the spectrum, because we’re all in this together, no matter how many times some people try to dismiss us by telling us that we’re not really autistic and don’t really suffer.

We suffer.  We suffer from all the sickness that saturates the culture in which we live.  Heal this culture from its obsession with disorders.  Heal the nastiness of the “autism wars.”  Heal the impact of the vitriol flung at those of us who are simply asking for someone to listen.  Heal the damage inflicted on entire generations of children who will grow up believing that they are broken and need to be fixed simply because they perceive the world in non-normative ways.  Heal the ignorance.  Heal the privilege of defining what’s “normal.”  Heal a society that turns difference into disease in the blink of an eye.

And then maybe we’ll be able to have a rational conversation about the concept of cure.  Until then, the conversation is simply an excuse to take out our suffering on one another, and inflicting pain doesn’t move the process forward.  So I’ll keep fighting for a world that respects and celebrates each and every person, because that’s the only kind of world in which true self-determination is possible.

Rachel Cohen-Rottenberg blogs at Journeys with Autism.  Neurodiversity, Self-Determination, and the Magic Pill appears here under the terms of this Creative Commons License.

Rachel Cohen-Rottenberg’s recently published memoir is The Uncharted Path: My Journey with Late-Diagnosed Autism.

[image: Rachel Cohen-Rottenberg]

Rachel Cohen-Rottenberg on 11/5/10 in featured, Politics | 2 Comments | Read More