Instead, I am going to allow the voices of the experts to
speak for themselves.
These are the voices of autistic adults.
They are the true experts.
We owe it to them to listen.
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“You wonder why it’s so hard to have a conversation with
me. I have no idea what you are
saying. Way before the trouble with dual
meanings and taking things literally and the time it takes to process spoken
language and the time it takes to formulate a response that will make sense to
you, the first barrier is the noise….
More than one person speaking at once or a
TV in the background or that terrible sound coming out of the tiny speakers on
your phone or iPad can prevent an autistic person from hearing what you are
trying to say. Too many sounds at once
can lead to a meltdown. My brain is not
sorting these things the way non-autistic brains do. I cannot efficiently weed out what you might
think of as background noise....
Acceptance is a room (dimly lit) where people
talk slowly and make sure everyone has a chance to communicate in whatever way
works best.”
(I think about all the words that stay locked in my throat, and
I give a small and terrified smile and look over their shoulder and into
nothing at all.)
I’m really quite lucky I have such a command of language.
(There are maybe five people in the whole wide world I can talk
to face-to-face without wanting to die, without having a panic attack, without
needing to hurt myself or sleep for hours afterward. Two of them receive speech
therapy. None of them obey the usual laws of dialogue. I know that, really, I’m
lucky to have anyone at all.)
My verbal agility is a sign of something, they’re sure.
(When I’m trapped into a conversation in the kitchen of someone
else’s home, I stare at the table and see nothing at all, and my throat closes
and my ears ring and the world is small and distant and hot and I am agile
because adrenaline alters our capabilities.)
I’m really quite social.
(If I am asked how are you I will always say fine. If you ask me
anything at all I will throw as many words as I can in your general direction.
I can have quiet hands but the loudest mouth, I’m very advanced, and for my
next trick I’ll even ask what’s up with you.)
I can answer every question you might ever have.
(Except for what do you need or how do you feel or do you want
anything or is this okay.)…
I’m articulate.
(So you don’t have to listen.)”
“First thing, everybody
communicates.
I will say it again: everybody communicates.
If you don’t understand the method, this only means that you
don’t understand, not that there is no communication.
Disabled people who have difficulties with expressive language,
or who are non-speaking
are often thought of as not being able to communicate. This is because the
majority is sometimes too lazy to think outside the box. Yes, I said lazy. We
also find it hard to understand the majority’s language but we are pushed and
forced to learn it, and to act in compliance. Even when we are only a few steps
from the majority’s way, it is never good enough. We are consider to be “able
to communicate” only if we speak, and act in accordance to, the language the
majority chooses to know.
This attitude,
seen in parents, teachers and other professionals is one of the things that
need to change.
I am a non-speaking Autistic who has learnt how to communicate
in a way that the majority is able to understand. It was not easy, it still
isn’t. Even after I had shown how much I knew, how much I was learning, despite
not being formally taught, even if I no longer cried as a way to let people
know that I was trying to convey a message,
the default attitude of teachers, doctors and others was still dismissive. The
attitude of the groups I mentioned are still dismissive.
I believe this is also true for other disabled people who don’t
communicate in what is considered “the normal way”.
The damaging attitudes toward different methods of communication
hurt us not only when we want to be heard, but also when we want to
participate, be social, or when we want to listen.
Attitudes toward communication reflect the big problem of
non-disabled people regarding disabilities: there is too much “awareness” but
too little understanding."
"we say “behavior is communication” a lot. because it’s true, and
important.
it is also a vast, vast understatement.
because here’s the thing. communication? it’s behavior. it is,
and it will continue to be, no matter how many times the powers that be try to
teach us that language is a set of rules, a dictionary, a grammar-work book or
a computer program. language is the way we change and move with our world,
patterned and pulled through like fabric and thread.
so when we say “behavior is communication” we don’t just mean
“when your kid has a meltdown, there’s a reason for it.” we mean “look at how
your child moves, and where, and when. how do they move with people? how do
they move alone? when are they still? if they sing and speak and
pattern-repeat, what part of their environment plays the tune they’re talking
to?”
Sometimes we make our patterns in different dimensions
than most people–sideways not time-ways. jokes that are funny not because they
say a funny thing, but because when you layer the first context you experienced
for these words on top of the current context you’re using these words in, the
combination of the two is hilarious. scripts that mean feelings, because the origin
of the script is a scene full of that feeling. even scripts that mean feelings
because the first time you heard them, you were feeling full of a certain
feeling. sometimes it’s like we live a life full of songs reminiscent–your
breakup ballad, wedding dance music, earliest church hymn…all these are the
size and heft of our voices on repeat.
just because someone speaks the words you speak doesn’t
mean that their language is like yours–we build our ideas with different
materials, in different environments, for different reasons. the next time it
seems like we’re going in circles with our mouths or our minds, remember: even
as we circle, time is passing. now is different from one moment ago, which was
different from two moments ago, and that means every time we do a circle, the
circle has changed. maybe only infinitesimally. but truly. and sometimes
circles can get wider, or narrower; sometimes it might look from above like
we’re tracking the same path, over and over into the ground…but if you climb
down onto the ground at our level, you’ll see we’ve been spiraling up to the
sky, or carving down into the center of the earth.”
We need to change our definition of communication so everyone can join the conversation.
We need to find a way to listen.
Amy Sequenzia, thank you. Your post was absolutely incredible and insightful. I cannot express enough how much your words meant and impacted my thoughts.
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