Sharing: What Does Autism Feel Like? | The Mighty

A woman on the spectrum explains in depth what autism feels like to her.

a woman in a vest and white shirt looking up at the camera
Lori

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 personalexperience of living life on the spectrum as being theuniversal experience of living life on the spectrum. My story is just that — my story, and while there can always be 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 ever want to 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 their words would eventually make their way to my face… and more painfully, to the center of my heart.

Their cruelty has made me cautious, and there have been times when I’ve considered catapulting myself away from this public perch as an autism spokesperson.

Every time I prepare to turn tail and run, I inevitably receive an email from a mom who’s hurting and confused and trying desperately to find one tiny hook to hang her hope on as she battles what is tormenting her child. She asks me to help her understand even an ounce of what her little one might be feeling, and I realize that I can’t allow mean comments or the face of my own fear to silence this story.

So, today I go to that place where I’ve often feared to publicly tread.

Read the full article here: What Does Autism Feel Like? | The Mighty

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