Having a disability like autism means it comes with a lot of preconceived ideas about what someone like me is capable of. For example, since I can’t talk well, people may assume that I have nothing to say. Around the time I learned to communicate, I made a decision that I would share as much of my experiences as I could in order to prevent other autistics from going through what I had. Now I try to write all the time, and am lucky that I stumbled upon poetry in my sophomore year of high school. Poetry has been such a wonderful way for me to describe what I feel. Through it, I find ways to give non-autistics a glimpse into my mind: how much I truly do feel and hear and think about what goes on in the world. (I wrote a poem that I invite you to read below.)
Likewise, some think that autistics are stupid or in some way delayed. I think so many of us are misdiagnosed with an intellectual disability, when in reality, we are wired so differently and are navigating a world that is not structured for the way our minds function. It can take years for us to figure out how to accommodate the differences – so what happens to us under that diagnosis in the meantime? I remember how my mom took me to a psychologist when I was six for testing. The guy asked me to point to the correct pictures, but sometimes my body wouldn’t cooperate, and I’d touch the wrong one. He later told my mom that my IQ was 30, which was upsetting to her, of course.
I had to go back a number of years later, but this time when he told my mom that my IQ was low, she politely told him she thought his conclusion was bullshit and proved nothing except that I was still disabled (which was the point of the appointment so that I could keep my caseworker). I remember looking at his surprised face and was surprised myself when he thanked her for that perspective. It seems that many parents he saw made those test results the sad benchmark for their child’s future.
Finally, a lot of people think we autistics make weird connections between two seemingly unrelated objects or concepts. Let me explain: my mind is organized in such a way that I retrieve memories based on pictures that are tied to emotions. Anytime I want to find myself frustratingly embarrassed, all I have to do is picture myself in Kindergarten where I was lost and clueless for much of the time. I only have to remember how the teacher use to talk down to me, and that red heat of shame floods over me as if I was five again.
Let’s not overlook words like “coffee” or “work.” I associate both of them with hanging out with my mom and writing lots of essays for homework and my blog, eating day-old coffee cake while listening to background music. My notion of the word “love” is tied up in a mental picture of a certain girl’s freckled nose.
While it would be easy to dismiss us as being too hard to understand, I would encourage parents to keep trying to find ways to accommodate their child’s needs and differences while helping them navigate what is undoubtedly a confusing world filled with triggers and idiosyncrasies. Ignore the test results that predict intelligence, and feed their mind with compassion and respect, knowing that your child is doing their very best to make sense of your world. They will change and grow into people who will either believe in themselves alone, OR have your support to reach the life they seek. It starts when they are little, so don’t pay too much attention to tests and milestones. It will turn out the way it’s supposed to in the end.
A Forest Song Sings Best as a Duet
We are not so different, you and me,
for our roots grow deep and thick,
nurtured by sweet-smelling Oregon firs
that drop their needles
into our waiting palms.
Our leaves spread through canopies
that weave a quiet sleeve
of green and poke through
your memories of being young
and in awe of the mountains.
We are not different at all, you see,
for I am you and you are me.
Make a path through the trees and
follow it down to the place
where we’ll meet tomorrow.
Have your heart ready.
Long will we wander
among the wild bees
and young meadow flowers
until our hair is matted down with sap.
I’ll comb out the amber and string it
around your wrist
that holds the needles
that prick my heart
Into a tattoo of us.
-Niko Boskovic