Friday, March 29, 2013

Yes, That Too: Autism Speaks, I Want To Say

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.
From it:
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.
Autism 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.
I 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.
Almost 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 I'm here.
Now we get to the part that highlights the increasing diagnosis.
Autism 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."
Autism 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.
Autism 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.
Autism 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.
Autism 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 to emulate.
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.
"I 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.)
That's 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.
Autism 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.
Autism 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.
And 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.

Thursday, March 28, 2013

Tiny Grace Notes: Autism Speaks, I Want To Say

Reprinted from Tiny Grace Notes

Think what you are doing to our mothers.

Perhaps you believe you must use the hurtful, bigoted rhetoric to cause the panic to raise the money.  Perhaps you think you have to make videos about us without ever really showing us using our actual voices, our actual use of AAC as it actually is, or people will get the idea we're not such a terrible burden or tsunami or whatever the the trigger word of the age seems to be.  I don't know what you're thinking, but I know what you're doing, and I know it isn't good.

This morning I saw a tired, pained mother say she "had to be pro-Autism Speaks" even though she disagreed with your tactics of this nature, because you lobby for services for her family, and she had "nowhere else to turn".  I looked into this, but didn't have the heart to tell her this thing that you already know, that you spent $460K on lobbying last year, a mere drop out of the millions, millions you raise and carry as assets (yes, I can read a financial report) and much less than you spend on your salaries, which are so high you don't easily make it in to count as a non-profit in the USA any more and have to explain the exact rules to your stakeholders in well-crafted wordsmithing so they don't get skittish.

I didn't have the heart to tell her that of that wee amount that goes to lobbying, not all of it or even most of it seemed from the government reports to be having anything to do with services for her family.  A lot of it seemed to do with "science" again....  How is it going to help this woman's family right now for you to figure out how her child could have been prevented?  It isn't, and you know it.

You will be hearing from a lot of us Autistics today in this Autism Speaks, I Want To Say flashblog, if you listen at all, about what you are doing to us.  But I am very clear on the fact that you do not care what you do to us.  Still I wonder: do you care what you are doing to our mothers?  Scaring them and taking their money and saying you will help them get needed services when what you are really doing is trying to prevent more of their families from happening, and making a very handsome living while you are at it: does this sound decent to you?

This is our mothers you are doing these things to.  Our mothers and fathers.  Are there no mirrors in your house?

Amy Sequenzia: Autism Speaks, I Want To Say

Reprinted from Autism Women's Network

Written by Amy Sequenzia
I want to say that I speak for myself concerning my neurology and how I communicate. 
I want to say that if you want to show the benefits of AAC, you should ask AAC users and not their parents or self-important “experts”. 
I want to say that you might have chosen to forget that AAC gives me a voice you cannot ignore but I will not be silenced. 
I want to say that, once again, you are wrong. AAC does not make me look more “normal”. I am not your definition of normal. I don’t want to be what you call normal. I am, and will always be, a proud Autistic, very distinguishable from my peers.

I want to say that I will use AAC to debunk all the myths you and your allies spread about me and my community. You can hide behind your money and the misguided celebrities you lie to in order to get money and attention but my voice is legitimate, my community’s voices are the ones with true expertise on autism and we are the ones who can choose our allies. 
I want to say that you might have fooled some parents into believing that just because you make a video about AAC, you are on our side. But you still cause damage with the same old message that we are “tragedies”. 
I want to say, to the supporters of your video, that they cannot support inclusion of Autistics, participation of Autistics and understanding of autism when the video does not allow us to actually say anything. And to the parents who still believe they only have a “lesser person” as their child, how about asking the Autistic AAC user how they feel about what they hear? 
Because if my father or a friend were telling the world about the “pain I once caused them”, and how “almost good enough” I am now that I have a voice, I would feel betrayed. I expect my right to speak for myself to be honored. Ask them! Let them express themselves! 
Autism Speaks, I want to say that your message is still wrong, even if you try to change how you deliver it. 
Time to stop speaking for us, Autism Speaks. That’s what I want to say.

*Flashblog happening today! Autism Speaks, I Want To SayBlog Postroll links all posts.

Friday, March 8, 2013

Autism Speaks, I Want to Say: A Flash Blog

This flash blog is the Autistic community response to the Autism Speaks/Hacking Autism video “I Want to Say”.
The mini documentary is supposed to be about non-speaking Autistic people using AAC to let the world know what they think, what they like or dislike, how they feel.
Instead, the video conveys a not so veiled message that we are not yet the ideal “normal”, we are a “little more acceptable”, but still tragedies. Typical Autism Speaks message.
Besides, Autistic AAC users get very little screen time and we never hear what they want to say. Instead, we hear parents and “experts” using hurtful language to talk about the Autistics portrayed in the video.
If you are a full time or part time AAC/FC user, if you are an Autistic who does not use AAC but believes that all Autistic voices must be heard, or if you are a non-autistic who really wants to listen to what Autistics who use AAC, and all Autistics, want to say, let Autism Speaks know. AAC gives voiceless Autistics a voice and we will not allow Autism Speaks to silence us, again, and keep us out of the conversation about us.
Not good enough, Autism Speaks. Not when you use what gives us a voice to send a message that hurts us.
-Amy Sequenzia