A Diagnosis Without a Definition

Sometimes I feel like I have no idea what Autism actually is.

More than four decades spent living and growing as an Autistic person, nearly five years of being diagnosed, and hundreds of hours spent learning all I could about the topic.  Still, I barely have a clue.

Sometimes I read about genetically linked conditions, such as ADHD or Schizophrenia, and I wonder if the lines we draw between them really ought to exist.

But more often, I wonder whether this thing we call Autism is really a single condition at all, or whether it's many.

A couple of months ago I unexpectedly came across some old writing of mine, which outlined the results of some fairly extensive psychological testing I had undergone.  My summary of their findings included the determination that I had poor parallel processing.  I hadn't recalled this, and I was excited to stumble upon it in a way that few people would understand.  Immediately I thought, surely this meant there was concrete, objective evidence that I was not polytropic, but, in all likelihood, monotropic!  Who knew such testing even existed?!

I guess I should explain.  There is a theory of Autism that suggests our unifying feature is our inclination to have our attention focused intensely on a very limited number of things, such as a special interest or an an absorbing stim, and to struggle when needing to divide our attention.  This tendency to operate within narrow attention tunnels is referred to as monotropism and it gives rise to both our strengths and our challenges.  Neurotypicals, by contrast, are generally polytropic, meaning, they are "well rounded" and tend to juggle their attention between various interests, activities and sensory inputs.

I have no idea how they determined that my parallel processing sucked, but clearly they had, otherwise they wouldn't have stated this in my report, and the importance of this suddenly seemed palpable.  I had poor parallel processing because I didn't have a polytropic mind!  I had a monotropic one!  This wasn't actually a surprise, but as these pieces slotted into place, I could feel the narrative of my life take shape in a more solid way.  It suddenly felt as if they tested me for Autism all those years ago and didn't even realize it!

Of course, this was only a theory.  It soon brought me to Google, which, much to my frustration, had almost nothing to offer me regarding the potential connection between poor parallel processing and autism, or, really much about parallel processing at all.  I toyed with the idea of reaching out to a researcher and suggesting that it would make a fascinating study, but, it seemed somehow inappropriate.

Instead, I found myself asking other Autistics about their experiences.  Crickets.  The people who I might have expected to celebrate this discovery and ponder this question with me were seemingly indifferent.  I swear, often I feel like I'm too off the wall to even fit into Autistic spaces.

Later, I would bring it up again, only to be told by a fellow Autistic that parallel processing was one of their greatest strengths.

But, how?!  Surely no monotropic thinker could consider parallel processing to be their strength, and if we Autistics were not united by our monotropic thinking, then what did unite us?

I could feel myself bristle, the same way I did when an Autistic told me they loved clubs, despite (or because of?) the sensory and social overload.  The same way I did when an Autistic told me they loved to drive, apparently unbothered by the need to process and respond to multiple streams of sensory input simultaneously.  The same way I did when one Autistic after the next explained their ability to mask their Autism so completely that nobody suspected they were anything other than normal.  My brain would twist itself in knots wondering, but HOW do you fake understanding things that you don't understand?  I mean, I try, but give me enough time and I'll end up looking like a fool.

The truth is, I hate this side of myself.  I hate myself for questioning other people and their diagnoses.  I know it isn't my right.  I know that if I heard their full stories (which I also have no right to), I may feel differently.  I don't want to be unkind or deny people access to spaces where they feel a sense of belonging.  I know that people probably question me as well, and that it's hurtful, and yet, the part of my brain that demands accuracy can't seem to let things go until the gaps are filled in and everything aligns in a way that makes sense.

I do this to myself, too.  I have spent an absurd amount of time and energy trying to prove the validity of my own diagnosis to myself.  I'm maybe 98% sure it's accurate, but I question everything, and that 2% chance that I'm wrong still nags at me.  It's part of what drives me to keep expanding my understanding.  Yet, with others, sometimes I feel like I'm expected to reshape what I believe about Autism rather than question that maybe, just maybe, their diagnosis is wrong.  Only, the more I reshape what I know, the more I feel like there's nothing left.  Our community seems to argue over everything, from whether Autism is a gift or a disability to whether the diagnostic criteria are necessary or just ableist garbage.  Autistics are fond of saying "There's no such thing as a little bit Autistic.  You're either Autistic or you're not", as if there's a clear dividing line.  Yet, we can't even seem to agree upon a definition, and how can any of us confidently identify as something that lacks a solid definition? 

I get that it seems strange to others that I make Autism such a core part of my identity, but even when I was a young child, even before I had a name for it, it carried such a weight in my life.  I don't care what name is given to the way I experience the world, but I want it to have a name.  Dr. Dan Siegel uses the phrase "name it to tame it".  I need to be able to name and tame my story so that it can make sense and not simply overwhelm me.  But I also want that name to have meaning.  For now, my story has a name, but the more I learn, and the more I stretch the boundaries of what I know to make room for everyone, the more I realize I don't actually know what that name means, and that fact leaves me feeling hollow.