Heteropathy

I’ve been aware I’m categorically different from most people since I was 13. I came across autism - at the time, “Asperger’s” - when I was 27. Nothing resonated with me as closely as autism.

While trying to pursue a diagnosis, I was given a few different labels: Social Anxiety, Bipolar II, Avoidant Personality Disorder, and finally Autism when I turned 41. I had to wait for science to evolve, and for professionals to catch up with it, before I could merit a diagnosis. The only thing I can be sure of is this: the way I experience life is not the same as most people do.

Recently, I had the chance to meet with a group of people on the spectrum. Among them, I felt like I didn’t belong. I was overwhelmed by the noise, thinking about how to get out of there, wishing my soul could leave my body and run away. It felt no different from how I feel in any group of people - especially when there is too much noise, or too many colors.

Among “normal” people, I’m weird. Among “weird” people (no offense), I’m weirder for being too normal.

Driving home - 45 minutes on the highway, not counting the wrong turns I took, which always happens when I drive a route I’ve never been on - I once again found myself wondering what it is that I am.

The doctor who diagnosed me said something that stuck with me: many people feel different in this world and, at some point, wonder if they might be autistic. But most of them do not walk into four different doctors’ offices saying, “I might be autistic.” That was reassuring.

What became clear to me on the way home is this: the way I experience life is not different from how autistic people do. My brain fits the profile. My thoughts, my discomfort, my mindset… Everything screams ‘autism’. But how I respond to that experience is yet not the same as most autistic people do.

There is a significant and often painful debate within the autistic community between parents of severely autistic children and high-marking autistic adults about whether these groups belong together. Most high-masking autistic adults argue for keeping them together because it is the same experience. Most parents of severely autistic children believe they should be separated, because the challenges are not the same.

Here is my perspective: it is the same experience; it is, however, a different challenge.

I feel heteropathy. I experience the world differently. I respond to the world differently. I am not neurotypical (meaning  “normal”) nor am I autistic (from the Greek “inner-centered”).

I am neurologically and categorically different. Science does not yet have a name for it.

It is about time we invent one.

Marina de Cassia

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