4:01am February 2, 2015

Old Poem: Teenage autie with identity issues.

That’s an accurate description of me when I wrote this poem.  I was in the middle of truly discovering that I was autistic.  Not the word, but what the word meant.  I had not learned yet that I had a movement disorder called autistic catatonia.  Oh and if you don’t want to read my long-winded introduction, skip down to the TL;DR section, or (right under it) the "Read More" part, for the poem.

If you identify at all with the parts of this poem that have to do with being unable to move, I strongly urge you to read Catatonia In Autistic Spectrum Disorders (and here’s a PDF version suitable for printing) by Lorna Wing and Amitta Shah.  If you think your doctor or therapist or psychiatrist would be receptive, give them a copy.  I found out a year or two later because I froze in front of someone with the same movement disorder.  Then the paper came out roughly six months to a year after that encounter (previously there were maybe 3 or 4 papers, all case studies).  

When my mother faxed the paper to the psychiatrist who diagnosed me with autism when I was 14, he was very excited because he’d seen the signs of all this, coded them under Central Nervous System Disorder, Not Otherwise Specified, and then been able to find no fitting diagnosis.  Once he read the paper, he recognized me in every word on the page, became very excited, and diagnosed me on the spot, faxing a letter back to my mother with my autism-related diagnoses listed on it, as well as PTSD from institutionalization (he knew all too well the abuse I suffered because he worked there), and expressed gratitude to the autistic community for recognizing my problem and directing me to do research in medical journals.

Anyway.  I’m not posting this poem because I think it’s good.  I’m posting it because I know that now more than ever, there are teen and older auties discovering their identities after years or decades of trying (and often failing) to fit in.  When this was happening to me, the autistic community was like a tiny island.  Now it’s like a flood, but with islands everywhere for people to pick and choose from.  

Back then, you could choose ANI-L and InLV for mailing lists, you could choose #autism (run by and for parents, autistics allowed if we didn’t rock the boat), #asperger (run by the people at InLV, for autistic people only, notice the continuing trend where things for parents are called simply “autism”, but things for auties are called “Asperger” as if we’re all aspies), or #AutFriends (autie-positive chatroom for anyone with an interest in autism – auties, parents, friends, family, curious people, as long as they respected that it was an autie-positive place) for chatrooms, there were a small number of personal websites by autistic people (small enough that people could still keep a list of every single personal autism site without too much trouble),  Autistics.org, which I did not quite work for yet, was the only overtly political autism site.

Now there are so many more choices.  Back then, I was wading through a bunch of thoroughly crappy LGBT websites, and thinking “Wow I hope one day there are enough autie-positive websites that I can afford to write the crappy ones off as crappy.”  For better or worse, my dream has arrived.

Anyway, this is about how I felt back then.  I was on a boatload of unnecessary psychiatric medications, I was heavily dissociated both from untreated severe neuropathic pain and from the strain of dealing with speech and movement on a regular basis as well as PTSD, and I didn’t quite know who I was – which is a common adolescent thing, but often worse when you’re autistic.

I hope someone might identify with it, either with themselves now, or in the past, and that it’s helpful to at least know you’re not alone. I would have liked to see a poem like this when it was going on with me. This is not how I see myself or experience autism now, but it’s how I saw it when I was 17 or 18 and barely beginning to creep towards adulthood. Adolescence is a time when some people are more like children, some more like adults, some a mixture. I was definitely more like a child.  

I think my overlap between adolescence and adulthood started when I was 19, and I finally hit permanent adulthood in my mid-twenties – which is actually, neurologically, when the brain fully matures for most people and neurological adolescence ends.  Nonetheless, some adolescents feel more like kids, some feel more like adults, and I not only felt more like a kid but was occasionally moved from the adolescent to the child ward in the mental institution I kept getting committed to at age 14-15.  Adolescence is an in-between, confusing time and it’s fine to feel like a child one minute and an adult the next, and to search to find out who you are.  Those things are pretty normal whether you’re autistic or not, although I’d argue it’s worse when you’re autistic.

My life is so much better now than when I wrote the poem, you wouldn’t believe it.  I live in my own small two-bedroom apartment, with my cat, soon to get a human roommate to help with some daily living activities.  And I get services to help with all the things that autism, autistic catatonia, and my huge list of health problems prevent me from doing on my own.  I never expected to become more and more severely disabled yet live outside an institution.

TL;DR: I wrote a poem when I was 17 or 18 about how being autistic and undiagnosed and floundering for a sense of identity felt.  I hope it might help those going through it today.

Anyway, here’s the poem, under the cut.  

I am not me, for I am you
The things I see, I cannot do
And somewhere in this endless maze
My consciousness I try to raise

There’s nothing blocking out my thought
Yet somehow I know I am not
And here the thing that types in rhyme
Is far away in space and time

And following the eyes I wear
I try but I see nothing there
I know their patterns flawlessly
They’re brown and green just like a tree

So in the mirror I will peer
And hope to find my mind in here
And searching looking endlessly
To find within a hint of me

So much I want to really prove
But who can see who cannot move?
My body lifeless like a doll
If I attempt to stir at all

But if I banish all my thought
My body moves and I do not
It speaks and laughs and runs and walks
And stutters if I try to talk

I watch and float and feel detached
Inside an egg that never hatched
I float in seas of liquid tan
I touch the surface now and then

The price of safety is a fact
I watch but still I cannot act
As if inside a dream, I fall
I never question this at all

Unknown to me my burning skin
Gives rise to feeling from within
An onslaught that is too intense
A world so bright I cannot sense

I feel rage and my body screams
The action is not what it seems
For even though I strongly feel
Expression now is less than real

My thought flickers and disappears
Meaningless sound filling my ears
And though I feel exposed and raw
I feel detached from what I saw

Two memories in parallel
Each other’s thought they cannot tell
So neither one is really whole
And neither ever has control

There’s something here I’ve never met
A being somehow separate
Although through it my thoughts must fall
I think it’s not alive at all

I want to know who makes me talk
And chooses words and how to walk
If I attempt to do these things
I lose control of everything

I try to speak but never can
I wonder when this all began
Away from me my body torn
Has this been true since I was born?

Except in methods circumspect
My mind and body don’t connect
A terrifying history
A Translator that passed as me

I call my name but cannot hear
The sound and meaning disappear
A mind that thinks, a mind that moves
To speak, these are the things I lose

A blankness cuts my thought in two
I am not me, for I am you
And blank, and blank, and blank some more
I know not what I thought before

I reach within my vacant mind
A source of words I cannot find
The eyes are staring back at me
I wonder now, what do they see?

Impossible intensity
I am not you, for I am me
A message I will try to send
This poem finds a fitting end

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