Reprinted from Yes, That Too
Before I even watched the documentary, reading your description on
your site gave me a pretty good idea about what I want to say.
Autism Speaks, I want to say that for something "about" AAC, the described focus is all wrong.
It shouldn't be about the parent's emotional struggle to communicate
because it's about the kids. It shouldn't be highlighting the increased
diagnosis because that's not the point of AAC at all. The hope
and promise of AAC is potentially good, though knowing your
organization, I wasn't convinced the hope and promise that you described
would be the one of "how this actually helps AAC users."
Watching it, in the first minute I had to pause, cringe, wait to calm down. There was SO MUCH
touching of the kid, and there was no way to get his permission because
he didn't have his AAC out to answer or anything. Yes, I know that
she's probably his mom, but... I'm Autistic. I have touch sensitivities.
That kind of constant light touch drives me nuts. Then they got
him set up. (He's using what looks like FC?! Was not expecting Autism
Speaks to use that, I'm... actually kind of impressed by that, but,
like, why "I am excited"? That's not actually telling us what he wants to say, which is the title of this...
And then they call autism a nightmare. NO NO NO NO NO.
Autism Speaks, I want to say that you need to stop using that kind of rhetoric because it is actively hurting the population you aim to serve. I don't care why you think calling autism a nightmare is OK, I don't care what context you think you have to justify it, you need to stop doing that, and NOW.
Speaks, I want to point out the irony in having your autism expert say
on camera that other's ignorance is responsible for some of our
suffering when it is your brand of awareness that causes it. Yes, you.
I have dealt with the ignorance of "never heard of autism before" and I
have dealt with the ignorance of "educated on autism by Autism Speaks."
The latter is far worse. Autism Speaks, I want to say that you are part of the problem by your own description.
don't know if the things that we see on the screen next were things
that the featured AAC users actually typed, but if it was not by them,
another person with autism, or an autistic person, then it should not
have featured. It's dishonest to mix things AAC users actually typed
with things that we only imagine them to have typed, so it needs to be
clear which is which. (I could see those things having been typed by a
person bearing the education of Autism Speaks on what it is to be
autistic, what it is to be non-speaking, so I could believe that this
paragraph is moot. But I could also see it not being moot, since we know
that Autism Speaks has written in first person about things that they
are not in the past.)
And then we cut to kids doing things that I
have done, some of which I still do. I suppose it is supposed to be
illustrating how different and tragic we are? I don't know, they just
look like kids to me. Autism Speaks, I want to know what the purpose of
that was, because different and bad are not the same and either that
scene was pointless or you're using the merely weird as evidence of bad.
3 minutes in, we see an AAC user typing a thing that has substance. "I
am ready to change the way people view us." So am I, so am I. Autism
Speaks isn't going to do that in the way I'm guessing and hoping you
would like to see, always viewing you as a cut below normal, but
goodness do I want the way people view us to change. It's part of why
Now we get to the part that highlights the increasing diagnosis.
Speaks, I want to say that you really need to quit it with comparing
autism to AIDS, diabetes, or cancer. Not that those are particularly
great to compare to each other, even, but they all have "has the ability
to be fatal on its own" in common, at least if left untreated. Autism
can't do that. Autism Speaks, I want to say that you need to stop
comparing autism to death, stop calling autism a nightmare, stop making
it about the parents, stop focusing your conversation, well, anywhere
except the autistic people and what will help us most. (Hint: Actually
giving nonspeaking people iPads and other AAC devices and paying for
them to be taught to use them is a better use of your money than pretty
much anything else you do, including making this video.)
"He's really sweet for being an autistic child."
Speaks, I want to say that if you have provided the education that
leads people to think that is a compliment, rather than the statement
that autistic children, autistic people, can't be sweet, then you are
Doing It Wrong. And yes, I feel safe saying that you're the group that
provided the "education" leading there. Acceptance does not mean
thinking we are sweet... for autistic people. It means understanding
that we have the full range of sweetness and meanness and happiness and
sadness and anger and frustration that all people have, realizing that
anything ending with "for an autistic person" is stereotyping us and
going to be wrong, going to be bad.
Autism Speaks, I want to say that leading parents to believe that they know for sure
that curing their childs autism would lead to them having a happier
life is not autism acceptance. I want to say that it is, in fact, the
opposite of acceptance, and it isn't even true. Being autistic
doesn't prevent happiness. It is a failure of this "theory of mind" so
many claim we lack to assume that we must view our lives as you view
them. Remember that we have never lived another way, remember that
autistic people have this tendency to not like change, remember that our
life of experience will still be of things that line up with autistic,
remember that there is no way to make everything as if we never were and
that a neurotypical mind with autistic memories is not a combination
that is going to work well. It is one that will lead to all kinds of
confusion, all kinds of pain. Happier? I doubt it. More normal seeming?
I'm sure of it. And I think that conflating normal with happy is one of
your main rhetorical issues. Maybe it always has been, that and
conflating different with bad and the specific difference of autism with
death and despair and nightmares of your own creation.
And Autism Speaks, I want to say that speech and communication are not the same thing. In a piece about AAC, you should know better
than to have the two conflated. It's not the same. Some autistic people
will develop speech "on time," others later, others never, some speak
and then stop, and keeping speech linked to what we want to communicate
takes a lot of work for many of us. Keeping our AAC linked to what we
want to say is often easier, even for those of us who do speak. Typing
is more reliable communication than oral speech for many of us.
Speaks, I want to say that the purpose of AAC is communication. It is
not, was not, should not be to make us more normal, but to let us
express ourselves as we are.
Autism Speaks, I want to say that
conflating whatever it is that means a kid is in constant pain with the
fact that he is autistic? That's not responsible. Like, at all. Because,
yeah, sensory issues are a thing, but "failing to accommodate sensory
issues" isn't autism, assorted chronic pain conditions aren't autism,
autism on its own doesn't do that.
Autism Speaks, I want to say that "swallowed by his autism" isn't an OK way to describe anyone. Ever.
Speaks, I want to say that not being able to communicate in ways that
others understand does not imply a disconnect with the world as a whole,
just with the people who can't understand. There is a lot of world
besides just other people. And there are a lot of things that can be
communicated through behavior, even negative behavior, if only you know
how to listen. "Autism Speaks, it's time to listen." Sound familiar?
Well, Autism Speaks, it's time to listen to the behaviors in front of
you, because behavior is communication and part of meeting us halfway is
understanding that, even if it takes longer to figure out exactly what
it is communicating.
Autism Speaks, I want to say that oral speech and communication are not to be conflated. Even in a video about AAC, you are making that conflation. It needs to stop.
Speaks, I want to say that realizing that every autistic person whose
hands you got communication into could, in fact, communicate, was, in
fact, competent and thinking, should be a step. It should be a step
towards presuming competence for all autistic people, for getting communication into the hands of all
autistic people. If you are truly out for our best interests (I know
you aren't but hey, let's offer up what you would do if you are,) the
thing to do is to make sure that every autistic person has access to AAC, that AAC meetings are one of the first
things done. Maybe the first. Because an autistic person who
communicates in ways that others understand can and should take an
active part in deciding what to work on and how. An autistic person who
types can speak for themself.
Autism Speaks, I want to say that
"these children are normal!" is not the proper follow up to the glimpse
of understanding that they are competent. They are wired differently in
fundamental ways, they experience the world differently in fundamental
ways, just as I do. They are not your illusion of normal, and they never
will be, and that's fine. They don't need to be. They are human, and they are autistic, and they are completely distinguishable from their peers,
and all of these are fine and good and none of them contradict each
other and normal is an illusion that no autistic person should be forced
Autism Speaks, I want to say that normal isn't the
point. Normal was never the point. AAC is for communication, not for
normal. If it were for normal, I would have let people thought I was
"just quiet." No, I am a part time AAC user, and my friends have, by and
large, seen me use it. I've gone out and socialized beyond what I
needed to do, using AAC, because I wanted to spend time with friends. If
normal were the point, I would have gone home. None of them had
realized speech had gone kaput on me until I pulled out the iPad. But
communication is the point, along with everything communication
can lead to. Socialization, writing things that move others, telling
others about your decisions and, if so chosen, why you made the decision
you made. Wants, needs, hopes, dreams. AAC lets us tell of those. It's not about normal, it's about showing the unique and completely distinguishable selves that we are.
want to say I think technology has changed my life. I can communicate
with the world, and I have choices in my life." Yes. She gets it. Most
of this video suggests to me that you don't get it, Autism Speaks, but
she gets it. She knows what this is for, she knows how this makes her
life better, and those words are the sign of a self-advocate blooming.
(Yes, self-advocate. Right now, she is advocating for herself, though if
she does as she says she plans, the activist is coming.)
not to say there was nothing good here. They showed a range of people.
They showed boys and girls, they showed people of color. They showed
what looks like reading off what they had typed, which is related to how
AAC helps people develop oral speech. (Yeah, AAC use makes nonspeaking
autistic people more likely to develop oral speech and to do so faster.
Also, for part-time users like me, I find that "reading things I have
already typed" lasts longer than "just speaking" when speech is going
kaput.) They showed Kayla, the same one who typed about technology
changing her life, being at what seems to be college. Yes, college.
But those good things don't make the video as a whole good.
Speaks, I want to say that your metaphors and rhetoric for autism are
just as damaging as ever, just more manipulative and better hidden. I'm
not sure that's actually better.
Autism Speaks, I want to say that
your videos about us aren't even really about us, but about our parents
and teachers speaking about AAC as if it is some sort of magic.
Autism Speaks, I want to say that making it about others views of what we do is part of what's wrong with this.
Speaks, I want to say that you need to do better, and I want to say
that doing so will require fundamental changes, not just surface paint.
Autism Speaks, I want to say that I will keep saying these things, and
that I and my Autistic brethren will keep typing and speaking.
Autism Speaks, it's time for YOU to listen, and to hear, and to answer. For real.