Autism 101: Hating Your Autistic Child

Ray Hemachandra @ Golden Moon Publishing

My son Nicholas, October 2014My son Nicholas yesterday, October 2014

Full title and full disclosure: Autism 101: hating your autistic child … and teaching her or him self-loathing.

Twice in the past week I’ve seen “I love my child, but I hate autism” posts by parents of autistics. One was written by a real-life friend I respect greatly, and one was by a Facebook friend I’ve never met.

It’s not that this language is rare. Somewhat shockingly to me, despite much good work by many autistic adults and autism professionals, it is a language still common to many of the largest autism organizations and associations. It is a language still common to many autism parents. It is a language still common to media and general society.

It is, indeed, a language and idea most common and base.

Most times I wince, shudder, and keep moving, because it happens so often and it is so heartbreaking…

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The first and only time I ever saw you cry
we were working in lab together and your phone
dinged softly from where it was tucked into
your pocket. Hold on, you said, pulling off
your gloves. I watched you unlock the screen
and scan the text message, eyes flickering from blue
to muddy grey. Your mouth set itself in a not-
quite-firm line, the way I imagine it must have
set itself when you were little and looking at a scraped
knee or twisted ankle. What is it, I said,
not knowing what I expected to hear, but all you said
was Her cancer relapsed.

I am not a good chemist. I break glassware, burn
through gloves, get distracted by the fume hood’s
humming, and too often I have to ask you for help. You are
an artist, almost, adding catalysts, a little heat,
and you always tell me to keep practicing, that things
will only get easier. I wasn’t sure I believed you
until that day, when I caught a glimpse of your eyes
heavy with water before you snapped the goggles back on.
You went back to making a plate, spotting samples
onto the surface in small, even drops, and in your
normal voice you said If you’re having trouble with your reaction,
scrape the sides of the beaker to make it go.
We were all so young then; what we needed was time.

The Body

Some days I like to sit back and watch my own life
unfolding, as if I am in a movie theater, curled up
with a soda and a plate of nachos. It is in this
velvet seat that I watch the woman who is me and yet
not me unfurl her legs and cross easily to the door
to welcome a visitor. She is taller than I remember,
and thinner too, with the glinting appearance of
an antelope, all wide soft eyes and battle scars, and
I can see how people might respect her or hate
her, the path decided on a turning instant. Whatever else
she is, she is not graceful. Her voice is nearly
steady and so are her hands, but no matter how hard
she tries she can never control either, and I wonder
why, absentmindedly scratching her mosquito bites.

There are times when I hate her, hate her stubborn
curves, hate the tiny surgery scar on her eyelid
that itches at the worst times, but mostly I love
her, especially in the moments that bring us back
together, like when someone’s hand traces
her backbone, each vertebra a comforting
rosary bead. Better yet, I love her in the first
moments of the day, when she opens the front door
and her skin pricks, cool as mountain air, its
gentle movements circling me back to center.

Letters from the Hedge: October 19, 2014

It seems you’re a lot like me
You dug yourself into places
You never thought you would be
But don’t you fret, and don’t you mind
The only constant is change
And you never know what you’ll find

– Radical Face, “We’re On Our Way

This is going to be a short one, because in a few minutes I have to go to the gym.  I’ve been getting more and more tired of being labeled “unfit” and being teased, however gently, about my body.  I understand I’ll never be perfect, but damn if it wouldn’t be nice to qualify as thin instead of average.

Anyways, Friday was open mic night, and I was the opening act!  They put me first!  Me, the dork with the depressing poetry that I didn’t even have memorized, so I had to read it off my phone!  Definitely one of the crowning moments of my life for sure.  One of the poems I read was the recent one about my hair, which was addressed to two people.  (Un?)fortunately, one of them was actually there, but I doubt they understood that it was a very, very lightly barbed rebuttal towards their treatment of me (and my hair.)

One of the good things about poetry: five different people can read it and interpret it five different ways, and none of them will be wrong.

Moving on.

On Wednesday (I think) I auditioned for my first play this semester!  I really felt like I didn’t overact this time, mainly because the character whose monologue I was reading already seemed so much like me.  But we’ll see how that goes.

Plus, look!  It’s about queer women!  OMG PLS.  MUST HAVE PART.  Source.

Man, this semester has been weird so far.  I definitely feel like I’m flying blind half the time; none of my previous experience has prepared me for anything that’s happened since … hmm … last April.  It’s terrifying – but it’s also wonderful.  I have a lot of hope for the future.


Whenever I pull my hair into its usual ponytail
I remember waking up and feeling your nose
pressed into it, your breath warm against my ear. I tell
myself that even though I am scraping my hair back
to keep it away from fire and chemicals, to stop it
getting stuck against my neck and sneaking down
my shirt, my fingers are still tracing
the same path that yours took. Later, getting breakfast,
I wonder how my hands could be so lucky.

Two years ago, I cut my hair as short as my parents
would let me, a punishment for things I had
no words for. In pictures from that winter,
my hair hits straight and short, my face is
too thin, my eyes are glassy. Since then, I’ve let
my hair grow. It’s been slow. Interrupted by
hunger and disease. I’ve cursed the baby fuzz
around my face, twisted hairs until they broke
during midterms, let grease and dirt cake
on my scalp and then spent hours in hot water
trying to boil out every last droplet of sadness.

My hair is the wrong length now, neither long nor short
enough, neither completely curly nor entirely
straight, caught between red and brown, but the way
you touched it that morning was as if you knew
every story woven into its keratin, knew what
a complicated, tangled miracle it was. Nothing about
our bodies is simple. No scar or fiber has an easy
history behind it, but they all flow together
in the end, coalescing into sunlight, twisting across
bedsheets. Our biochemistry is as effortless as dreaming.

Letters from the Hedge: October 5, 2014

I wrote a whole long post about how lonely and sad I’ve been feeling this weekend, but I deleted it because it was boring even me.  In other news:

  • I have homework in every single class this weekend, plus three extracurricular obligations that need to be done before tomorrow.  I do not foresee sleep tonight.
  • Despite all of this work, I mostly just want to cuddle up in a big furry blanket with someone, because I feel like that would help me feel like everything was okay.
  • Everything is not okay.