Why I (Still) Boycott Autism Speaks

(Note: This is the commentary from the link to my “Why I Boycott Autism Speaks” post. Something about the format of my blog made it really hard for me to read, though, so (under the assumption that some other people would have difficulty reading it also) I decided to put it in its own post.)

Since I posted about why I #BoycottAutismSpeaks, they have posted a “call for unity”–another attempt to silence the voices of the Actually Autistic people they claim to want to help.

I want to make an addendum to this post, however, because I mention my experiences with meltdowns, and I don’t want anyone to take what I say about my meltdowns as evidence that being nonverbal is The Worst Thing Ever. Being nonverbal sucks for me, but its not because there’s something inherently wrong with being nonverbal, and it shouldn’t be taken as a commentary on the experience of other autistic people. It sucks for me because most of the time, I’m not nonverbal. Verbal and written communication are my main methods of communication, and so far I haven’t been able to substitute written communication during the periods in which I am nonverbal.

When I become nonverbal during a meltdown, it’s scary. All of a sudden I can’t communicate, and the people around me are getting increasingly frustrated by that fact. That’s what’s so hard: not being able to communicate.

Communication seems to be a big thing for Autism Speaks–they talk about how autistic people are cut off from their parents/the world, and it seems clear they consider being nonverbal to be a mark of being “low functioning.” But there are plenty of ways for people who are nonverbal to get their thoughts and feelings across, even if finding one that works can be a difficult process, and even if those ways aren’t foolproof. The thing is, communication isn’t a one-person process. In order for autistic people, nonverbal or not, to communicate, you have to actually listen to us.

And if Autism Speaks really wants to help Autistic People, they need to start doing just that.

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Speak English

When I was younger people would tell me to
speak English because I guess the words I used were
Toolongtoowrongtoo
Obsessiveimpressiveprecise and
Specific like
“iambic pentameter”
means what I mean when I say it and
nobody knows what
“trochaic tetrameter” means so stop
showing off
and isn’t it funny how sometimes I can’t
understand English at
all

and
I guess maybe I speak in
languages that don’t make sense like
ReferenceAllusionFictional
character on a tv show and
ReadingAboutShakespeareAt5in the
Morning and
AccidentallyPickedUpSlang because I
Forgot to stop trying to fit in

And sometimes
ColorTasteSoundNumber wave
When I mean
TouchFeelSmellSee think
or
FeelingWriggleScribbleWrithe
When I mean
SenseHappyBurstingItch

Like sometimes my mouth forgets how to make
words or my brain forgets to
send them and I end up
prrrrrrrring like a cat and
flapflapping like
my hands are loose lips sinking
ship after ship after ship

And sometimes people talk and the words fly
past my head like particles of dust that
flutter out of the way of my hands  and when I try to pin them down they
speed like
dreams.

And when I can talk in
sentences and understand
how people string together thoughts I guess they call those
“Good days”
Even though they change by
hours
But when I talk my brain gives me words like a
textbook and I guess I’m still doing it
wrong.

And when I was in high school I could list my symptoms like I was
WebMD but maybe
that’s because I spent three years with no one but
doctors
But fourteen year olds don’t talk like
medical reports so I guess I was
faking.

And sometimes when I talk I forget that I need
Tone
or my voice won’t move the way it needs to and my face won’t
curve and my throat won’t
laugh and they told me in linguistics that English wasn’t tonal but I don’t think
that’s true.

And people who are good in English class you’d think would be good
at English but I can
only read things half the time and sometimes
English stops making sense and I understand
sarcasm but only in theory and I understand
metaphor but only in books and I understand
people but only when I can map their arcs like
waves inside my head

And I spent my life mapping the English that they speak in
written down worlds  and still only grasp it sometimes
but the English that they speak in
life
eludes me.