Wednesday, 4 December 2013

The hidden army of undiagnosed Aspies

Speaking from experience, it's pretty hard to get an Aspergers diagnosis as an adult.

My own life is deeply blessed in comparison to the circumstances people are living with in less fortunate parts of the world.  I grew up in a peaceful, first world country with a good medical system, with trained teachers and doctors and counsellors in ready supply.  But even so, it took me a quarter of a century to get diagnosed, despite having symptoms that are (in hindsight) pretty obvious.  And when I was diagnosed, it was largely down to luck.

There are a lot of reasons for that.

Aspergers only became a thing one could be diagnosed with during my high school years, and in those days most peoples' idea of autism was the rocking, nonverbal boys (and it was always boys) one read about occasionally in Readers Digest.  The depth of the spectrum wasn't really understood at all.  And if you don't know a thing exists, you won't be able to recognise it.

Then, my book smarts and apparent cleverness hid the challenges I was facing in pretty much every non-academic area, and my kick arse verbal skills made me sound like I had my shit together and understood the world much better than I actually did.  So the idea that all might not have been well below deck just didn't occur to anyone.

Another big contributing factor to how I sailed under the radar for so long is that I'm naturally quiet, passive, and want to fit in and do well.  I never "acted out" or "exhibited behaviours".  I just quietly did my schoolwork, cried a great deal, and tried to stay out of everybody's way.  But because I never pitched a fit or burnt anything down, I doubt anyone realised what I was going through or that I needed help.  It's all well and good to have programs to help "disengaged" youth, but disengagement doesn't always mean causing trouble.  How are we reaching the kids who are quiet and bookish but are just as disengaged and need help just as desperately as the loud, disruptive kids?

All these things mean there are a lot of undiagnosed adults on the autism spectrum out there.  How do we get a handle on the numbers, though?  How do you count something that is, by definition, unknown?

A lot - I'd suggest the vast majority - of these undiagnosed folk don't suspect they're on the spectrum or even know the spectrum exists.  I certainly didn't, right up until the moment a psychologist asked me "what do you know about Aspergers syndrome?"  I'd never had anything to do with Aspergers or the autistic community, I'd never researched it - why would I? - so I had no reason to ever make the connection between autism and my own tangled up way of being.

White canyon near Sipapu Bridge. Natural Bridges National Monument, 05/1972.
Being alone: not always awesome

That diagnosis is the best thing that's every happened to me.  Even though there's very little available in these parts unless you happen to be six years old, just having that information has equipped me with tools and self-awareness to help me help myself.

And it makes me sad to think that there are other people still feeling the way I felt pre-diagnosis.  Not understanding why they're different.  Feeling so very, very alone.

They deserve better than that.