Tuesday, April 19, 2016

The Angst of Autism: "How Does Autism Feel In Me?"

One of the questions I’m most often asked by parents of people living with autism (and one of the questions I’m honestly most afraid to answer) is “What does autism feel like?”

My fear comes from two places.  

The first is that I never want anyone to take my personal experience of living life on the spectrum as being the universal experience of living life on the spectrum.  My story is just that - my story, and while there are always common denominators in the autistic experience, there is also much diversity.  That’s why they call it a spectrum.  

Dr. Stephen Shore once said, “If you’ve met one person with autism, you’ve met one person with autism.”  

The specific ways that autism feels and manifests in me may be very different from the specific ways in which it feels and manifests in someone else.  So, I’m sometimes afraid to say how it feels because I don’t want to ever be set up as the autistic standard.

The second source of my fear is that there have been some folks who’ve just not been very nice when they’ve learned what life’s actually like for me.  I’ve been called "crazy," and "cuckoo," and "a couple of fries short of a happy meal."  I’ve been labeled a lunatic and laughed at by those who really should know better.  I’ve had people talk terribly about me behind my back - not knowing that their words would eventually make their way to the front of my face...and more painfully to the center of my heart.