Saturday, January 5, 2013

The Treacheries of Disclosure

For those of us who manage to reach adulthood before realizing that autism is the thing that explains why everything's always been off, it's hard to know who it's safe to come out to. It's hard to know which situations are necessary. Does your employer need to know? Does your healthcare provider? At what point do you tell the person you are romantically involved with?

In some ways I envy the people who get their diagnoses in childhood. Their parents get to field the disclosure question. Other times, I think those of us with the adult diagnosis might have the better end of the deal. We've had to learn how to navigate the neurotypical world on our own terms and often we draw strength from that fact.

But when you suddenly know what kind of different that you actually are, and it's simultaneously the most terrifying and most validating thing in the world, how soon do you share this information?

Sometimes I feel very much like Winston Smith from George Orwell's novel Nineteen Eighty-Four. The pains Winston goes throw to hide his thoughts, his true self, from the Party, is quite analogous to how I go through my day. By and large, it is the neurotypicals who decide whether or not I go to work tomorrow. It is the neurotypicals who decide if I fit in well enough to their social structure to earn an income. It may not matter that there are certain things that I can do better than most other people, if they feel I might be legitimately too weird to be trusted, they could just not call my back to work.

The job I have is of an on-call nature. I'm hoping for a more permanent position, but, in this economy, aren't we all?

While there are certain legal protections in the workplace for people with disabilities, I have not legally established that I have a disability. All I have is a psychologist's (and my own) opinion that, yes, I do have a brain that goes about things in an autistic way. And I'm still a bit too stubborn in my sense of identity to pursue the status of 'disabled' because I can do a hell of a lot if you give me a chance.

I'd love to be able to just run up the flag that says, 'yes, I'm an aspie and I kick butt at some stuff that you find difficult and you need me!'

But I'm scared. And the prevailing wisdom is that you don't disclose until you've established a relationship of trust.

So, in real life, off the internet, I don't disclose very often. My closest friends know. My family knows. The people who are my Facebook friends should know, but it's hard to tell if they even see my status updates.

In real life I've tried to tell my physician, and he was taken aback for a moment but quickly catagorized it as a problem outside his domain. The same with my ophthalmologist, although I do believe I have some sensory issues that an eye-care professional could possibly help me with. If I want to pursue it, I'll have to educate her on the areas where Aspergers/autism and vision issues may overlap.

When applying for an individual health plan I disclosed on their medical history survey. That proved a difficult step. I was initially denied coverage for having a pre-existing condition and had to appeal. The appeal was successful, but the process left me a little gun shy.

Now, I'm looking for a job in a new town. I'm in a new town for rather complicated personal reasons. But mostly because I'm too stubborn not to be near my daughter. But I need a job to keep this up.

In my last job I worked in an amazing high school program for students on the spectrum. I found that position as I was finding out about myself. After failing as an English teacher in a regular education setting, I found I worked quite well as a paraprofessional in an autism classroom. It makes sense. They're my people.

I know that's the kind of job I want to do here. And I know part of why I do it well is because of my own spectrumy nature. But I just can't throw it right out there on the job application. I have to get the job, then slowly build the trust.

So right now I'm subbing as a paraprofessional in a beleaguered school district where the predominant strategy toward special education is to try and keep as many kids on the conveyor belt as possible. In truth, this might be the most effective way they can use the resources they have. In practice, I feel like kids on the spectrum are getting lost in the mix. I know there are better things that can be done for them. And I know why I know this. It's who I am. But I'm just to scared to say it.

What if I get 'pre-existing conditioned' out of a job I know I can do better than 99% of other people?

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