Tuesday, June 23, 2015

The A Train

My husband and son both fall on the spectrum.  I often try living their 'autistic experience' by listening to their feelings and perspective.  I ask them lots of annoying questions, since they rarely offer lengthy (or even brief) verbalizations of feelings or thoughts without my badgering prompting. 
So, I ask and I listen.  And I try to imagine.  The hypersensitivity required to feel the vibration of the window air conditioning unit running in an upstairs bedroom by touching a counter in the room one floor below.  How stressful the need to rely on attributes like voice and hair length to recognize friends and family due to almost total face-blindedness. To remove theory of mind and experience the confusion and unpredictability brought on by being perpetually surprised by the actions of others. To become adept at conversing only in song, movie, or book quotes; at using someone else's words to express feelings or communicate needs and wants.  The calm stimming provides, creating mental 'white noise' to prevent over-stimulation. The need to tic that like the urge to sneeze, can't be stifled.  The literal language barrier. The need for sameness, for order.  How upsetting someone's summer haircut or furniture rearrangement can be to a person who catalogs a friend's identity according to long hair or whose mental map of  home is based on the current couch placement. And when those things change, imagining an entire mental file that has to be deleted and rewritten according to the new standard.  When your entire world, thought process, and actions are built upon these rules and orderly files, having to rewrite too many at once or having them unexpectedly deleted, causes mental havoc, and can even temporarily crash the entire system.

I'm fascinated and awed by my spectrummy boys' life experiences. It's the same life I'm living, yet not really alike at all.  It's as if we're on two separate trains heading the same direction.  Their rail line runs parallel to mine. While we pass the same country, same scenery, eat popcorn in the dining car, our tracks may even cross one another, and we will eventually arrive at the same destination (preferably Hogwarts), my beloved boys are riding on a narrow gauge steam engine, while I'm stuck on a diesel (make Thomas the Tank Engine jokes about diesels here).  Our destination and method of transportation are similar, but our journeys are so vastly different.

You don't know autism unless you're riding the A train, using the ASD operating system to navigate the switches and level crossings. I've known my husband for half of my life.  I learn something about him and his journey each day.  My son constantly enlightens me on what his autistic brain is like (I had no idea he was essentially faceblind until a few days ago!).  My husband, my son; they know autism. It is their method of transport, their operating system. To presume you know it for any other reason; well, that simply fails us all. Without acceptance and respect for their journey, a journey in which they see detail and minutiae that is blurred through my fast-track diesel train window, we do the world a disservice.  To assume their operating system is 'less' because it is different, is like saying a ride on an engine powered with coal is less than a ride on the one the diesel train because it takes longer to travel the same distance.  People are used to diesels.  They see the narrow gauge and struggle to understand, to know it.  They want to take it apart, disassemble it to see how it runs. What makes them it brilliant, so odd, so quirky, endearing, and at times, even dysfunctional.   

This curiosity is not a crime. We can learn, and learn much, from people with autism.  I devour the works of autistics like Temple Grandin, Jacob Barnett, and John Elder Robison; grateful and fascinated by the look inside their mind and way of thinking.  It's like reading a brochure or manual for that other railway, that other engine, from my seat on the diesel train.  And while I believe education about something is the fastest way to bring about a modicum of respect for it, I've also found that knowing autism isn't what matters most.  Before you disassemble the train to see how it works, accept and respect that it does work.  Maybe not in the same way as a diesel, but this does not make it defective.  Respect that the tracks look different and the engine is unique.  Learn all you want.  But before you try to take the train apart, remember this:

Acceptance and love trump knowing any day. If education is how you begin your journey to love and respect, I urge you to get your information from someone who knows autism. So, when the trains stop at the station, cross the tracks and visit the narrow gauge platform. It's the one resplendent with detail and full of intriguing characters. You won't be sorry.  You might even fall in love. 

No comments:

Post a Comment