Autism Unveiled Week 2
Who am I? How is autism spectrum disorder (ASD) a part of me?
I grew up not understanding why I felt different. The world was so overwhelming to me, and I was always baffled by the way my peers seemed to navigate through life’s chaos with such ease. I was always trying to mimic everyone else, to blend it. I taught myself a social curriculum, through trial and painful error. I endured sensory bombardment, but I never complained because no one else seemed bothered by bright lights or loud noises. It was exhausting, but I was able to camouflage so well, no red flags were raised. I survived based on tremendous amount of effort and sheer determination. I survived, but was not unscathed; I have experienced psychological distress in a variety of forms.
There came a point when my self-taught coping mechanisms were no longer sufficient to manage the demands of my adult life. That is when I went searching for answers, and at the age of 28, I finally found some – learning disabilities, giftedness, and most significantly, Aspergers Syndrome. Two years later, I am still coming to terms with these diagnoses, but it was incredibly validating to know that my struggles were not imagined, they were real. I no longer try so hard to be like everyone else, and I give myself a lot more grace for my differences. I also embrace the many gifts that Aspergers Syndrome has afforded me.
As a medical practitioner, I choose to keep my diagnosis private for professional reasons. It may seem hypocritical to advocate for acceptance, while at the same time, not wanting to publicly identify myself with ASD, but I feel it is in the best interest of my career. Sharing a diagnosis is not something that can be undone, and as such, I consider very carefully when and how I reveal this information.
That said, I still want to advocate for myself and others like me. I have made this poetry submission using a pen name, but I assure you, I am a real person. I am an adult woman, a loving wife, a new mother, a professional – all parts of my identity that the general public so often assumes cannot co-exist with Autism Spectrum Disorder. I think of my poems ‘thought flows’ because they are written as a representation of my thought processes and patterns. I hope to serve as an ambassador for neurological diversity, to show the neurotypical population that we (individuals on the autism spectrum) are here, we matter, we have thoughts, feelings, and ideas, and we have gifts to share.
Thank you for reading.
Kateri Michaels, Canada
Don’t Tell Me I Don’t Feel
Everything I do,
Everything I experience
I feel it so acutely.
And when I replay the event
on the high definition movie screen inside my mind
I live it all over again,
with just as much intensity.
I can feel chronically.
Days. Weeks. Months…
You too evoke my emotion,
Anything you do, anything you say
can stir, shake, and spill my emotion,
but you may not know it…
I have delayed real-time reactions
as it only dawns on my consciousness
how I really feel.
It’s rather remarkable
how even my emotional awareness is slow to transition,
reluctant and confused.
In the moment
to interpret, decipher, decode
just what has happened and
how to respond.
I cannot process, recognize, identify emotions fast enough.
In the moment
saying, “It’s fine, I’m fine, everything’s fine.”
Suppressing the turmoil,
to have the most minute reaction possible.
And all the while there is chaos on my inside-self,
running wild, and spinning.
Fighting to subdue my fight/flight/freeze instinct,
my outside-self remains the same,
constant, consistent, “calm”;
it does not change,
I won’t let it.
It is all I know to do.
Life has taught me
(time and time again)
no reaction is better –
than the ‘wrong’ one,
no reaction is better –
than the ‘right’ one in excess.
And I do not feel for myself alone.
Most certainly not.
I feel on behalf of others too,
as if I were that person.
Real people, fiction people, film people,
people I know, people I’ve never met,
no matter whom.
Shame. Violation. Pain. Injustice.
Embarrassment. Loss. Elation. Triumph.
they have unknowingly shared
as I joined them in their moment of feeling.
These feelings which I sense them to have
wash over me, and through me.
I bear them as my own.
And at these times more than ever
I am unsure of what to do;
because these emotions should not be mine,
but I cannot give them back, nor shake them off.
How can I subdue and tame
the overwhelming feelings I involuntarily absorb from others?
– written January 2013
Sorting and Labelling (and Why It Matters)
Make order out of chaos.
Categorise, file, sort my world.
I experience and live the world in pieces,
only one piece in focus at a time.
Fragments of the visual scene stand out, while the background swirls and melts…
Fragments of the sound-scape get backlogged in my ears, auditory traffic jam…
This is overwhelm, this is overload, this is overstimulation.
Therefore, I must compile the pieces.
I need to compile the pieces
in order to form some kind of understanding.
Finding where things fit
and how things fit.
Taking the trees and assembling the forest,
one tree at a time.
This is how I operate.
Day in, day out.
Sorting interactions, sorting outcomes, sorting environmental stimuli,
and slowly sorting out my feelings and reactions
to the aforementioned things I’ve sorted.
I take this crazy world and turn it into a semblance of logic,
a shifting puzzle in my mind.
In many ways it is part of human nature, sorting things
(though I may take it to another level).
But people do not sort objects only,
they like to sort other people too.
Once sorted, then categorized and named.
And that is how labels are born.
Many are scared of labels.
They are afraid of being boxed in, restricted, judged.
Worried that others have an ill-formed opinion of a particular label,
or at least an ill-formed understanding.
It is a legitimate concern.
But there can be benefits to (accurate) labels, when used in moderation,
when they are not overshadowed by the fears, or swallowed by the stereotypes.
There is value in knowing where you fit,
how you fit.
Labels make my world make sense.
Why wouldn’t I label myself too?
To figure out where I belong.
In truth, I have labeled myself from the beginning,
but my original, self-imposed label was incorrect.
It had an error, mistake, misrepresentation.
Once given the wrong label,
I started thinking I was broken.
Stickers on my forehead and in my heart,
‘You’re supposed to be like everyone else, you should be like everyone else.’
Translation: be neurotypical.
Thinking that I just wasn’t trying hard enough.
Thinking that if I tried harder tomorrow I could do all those things,
the things that seem to come so naturally to others… but not to me.
Mislabelled, leads to confusion, leads to hurt, leads to psychological scars.
Well scratch that, white-out, erase.
I have found my new label, my true reality,
my place in neurological taxonomy.
And it feels like coming home.
This time, I am the tree
and I’ve discovered what kind of forest I’m supposed to grow in:
an autistic forest.
1% of all the world’s human forests.
Our trees like to be a little more spread out, with room to breathe.
Our trees may grow a little more slowly.
Our trees are a little more sensitive to the elements.
But they are trees just the same.
Small but mighty,
we grow with strength, determination, perseverance
like you have never seen before.
Identification, classification, characterization.
It is a label, yes,
but it does not hold me back or tie me down –
that was my mislabelled experience.
Now I have been relabeled, restamped, corrected, found,
and this label shows me where I belong.
I am the piece,
(a whole, complete, and valuable piece… not a defective one),
and I finally understand
how I fit in the people puzzle.
And for me this is good.
This is important. This is necessary.
Order out of chaos.
– written February 2013
Kateri (pen name) is part of the Autism Unveiled Project – Six weeks of daily blogs featuring people on the autism spectrum culminating on World Autism Day, April 2, 2015.