Friday, October 4, 2013

If you don't use your words you won't be indistinguishable.

"What's wrong with saying 'use your words'? My son's ABA therapists told me to!"

Yes, and your son's ABA therapists jobs are dependent on the promise of indistinguishability, their entire professional life revolves around creating a performance of typicality, not with helping Autistic people actually be healthy happy Autistic people. The whole indistinguishability series is all about that. Today, let's talk about "use your words". This will be a trip through all the levels on which that phrase is not awesome, semi stream of consciousness style.

So, what is wrong with "use your words"? Let's think for a moment. When do you say that? Do you say it when you have no idea what I am communicating? No you do not. Not generally. Those of you who give a shit establish if it's urgent, life threatening or something, first. But you know I'm not dying? You have a pretty good idea what I'm saying? "Use your words!"

This is you holding my needs and wants hostage to my ability to communicate your way. Once you're reasonably sure I am not actively being mauled by a bear? You've decided it isn't important enough to me if I don't communicate it how you want.

This is an extremely dangerous assumption to make, and completely backwards. If something is urgent and important, words are hard. Your brain may go to words first. Mine does not. Not even a little. "Use your hands & sounds" is a better way to get useful communication from me when something is urgent and important. What my body does? Far more reliable than what my mouth says.

The less impact and importance my speech has, the more reliable it is, especially in a real-time communication situation. That part of my brain shuts down when what I say has immediate consequences of any significance.

"Use your words" assumes the exact opposite of this. It assumes my words mean more under duress. They do not. You are going to get whatever words fall out of my mouth in an order that may or may not make any sense or relate at all to what I am trying to convey. It might even be the opposite of what I mean.

Making that assumption comes from a dangerous place. When you demand that I "use my words", the underlying attitude is that I can but am choosing not to. That I am intentionally doing something to make my life more difficult. No, I am fucking not flapping, semi-signing, making non-word sounds, crying, starting and stopping words just to piss you off. Allistics act like we're just trying to make their lives difficult or add annoyance to their day. So they tell us to use our words, like it's just that simple.

But if we could, we would be. Let's walk in some Autistic shoes. Is flailing and sound making efficient? No. No it is not. It causes me far more actual problems than it could possibly ever cause you. "Use your words" says that I am choosing the non-awesome results of being unable to speak in that moment. It's really presumptuous, actually, for you to make that assumption. It's very allistic-centering.

"Use your words" holds my needs hostage to performance of typicality and says I do not deserve to have my needs met if I cannot make that performance work. That is what you are saying when you tell me to use my words.

And you don't even really want my words. My words come in atypical syntax (which apparently is charming when I'm not trying to communicate something that you don't want to hear) and I do, in fact, say "fuck" a lot. Especially under duress. That is not the word you want when you condescendingly tell me to use my words. You want your sentence construction. You want "polite" and "respectful" and the genuine words I have access to are not perceived as either-not the words I can use in a stress situation.

The result of this and of a childhood of "use your words" isn't less swearing or more standard syntax. It is a library of scripts. My grocery store small-talk script is unlikely to be useful--and has actively sabotaged medical care when the nurse triggered the "I'm-fine-thanks-how-are-you?" sing song. Having to fall back on scripts rather than use my natural means severely inhibits communication--my message is falsely constrained to the socially appropriate things I can echo under stress.

They may not all sound like echoes. If a script is caught as a script, it is "meaningless echolalia" and not communication, unless of course it fits the least irritating narrative for the allistics involved (see: the nurses who decided I was fine when they triggered the grocery store script. I had cysts hemorrhaging on my ovaries at the time. Plural cysts. This wasn't life threatening but it causes scarring and incredible pain).

"Use your words" is silencing. "Use your words" is a tool used to silence those of us who cannot-not will not, can not, express ourselves on your terms all the time. "Use your words" is yet another thing that promotes a facade of normalcy at the expense of our very real needs and desires. "Use your words" is yet another thing that demands performance, or else. "Use your words" is emblematic of the idea that only typical people have a right to have needs or wants. It is a Lovaas-esque "the child has no right to behave bizarrely" tactic that pretends we are nothing but our superficial behavior, and that we can choose to change that if there is a strong enough reinforcer.

"Use your words" is oppressive ableist bullshit. These are my words: Touch your fucking nose.


Anonymous said...

Also, here's where the goal of "indistinguishability" and "use your words" interact to become incredibly dangerous:

Once you're "indistinguishable," or at least the people who matter have decided you are...your words are never, ever enough.

Your words will not matter if you can't do things like intonation, eye contact, body language, and naming emotion right for them--you'll get yelled at for being bratty, pathetic, demanding, selfish, lying, faking it, or making excuses.

That's what your indistinguishability will get you when in fact your mannerisms and vocalization are very distinguishable.

Trust me. Been there.

Myria said...

"My grocery store small-talk script is unlikely to be useful--and has actively sabotaged medical care when the nurse triggered the "I'm-fine-thanks-how-are-you?" sing song."

Yes so many times. I have done this in dangerous situations so many times.

And also everything that chavisory said.

~Lynnea said...

A million times yes. The utter disrespect of this phrase never fails to make me see red.

~Lynnea said...
This comment has been removed by the author.
Astrid said...

Couldn't finish reading thsi post cause I got triggered. I get the "use youru words" stuff all the time now that I'm in a rehabilitation-focused psychiatrich facility where they refuse to even slightly let go of their rehabilitation mindset in order to accommodate my needs. Usually "Use your words" is accompanied b y something like "You're so intelligent," "you're an adult" or "I kow you can". Well, WTF? The sucky bit about autistic difficulties is that they're rarely consistent over tiem or situation. Mine are not at least. I am pretty verbal and can communicate quite typically when my scripts are not disrupted. This looks spontaneous - so much so that people have said I'm not autistic because of it -, but it isn't. I have ascript for communicating to staff that I'm unders tress and need help, but often even my most elaborate script does not safisfy t he staff's wish for clear communication of needs, even though I'm pretty sure they know quite well what I need. Well before I end up crying from the emotion writing this comment brings out, I'd better quit.

Anonymous said...

It took me a few days to articulate it, but you made me realize that "use your words" is simply "Spit it out! Why don't you just suh-suh-suh-say it? Cat got your tongue? Why do you stu-stu-stu-stutter?" wrapped up in therapy language to make it palatable to parents and the ignorant. It's condescending mockery intended to shame someone into getting past a disability that being shamed over makes it harder to get past.

I dunno why I'd thought it was at all different. I knew it was bad, just didn't realize it was the same beast as what I've dealt with re: stutter.

Cuz that post? I can sub what people say to me when my stutter's being a pain, and it's the same. "I'm gonna hold what you need hostage until you can express yourself in a way you literally can't right now. Because you could do it when you weren't upset, so obviously you can when you want to so you just don't want to. Any protest you make to the contrary is just you lying."

Also, I totally do the flap-sound-gesture communication if something urgent is up... and people who care about me at least try to help me until I can find the words to say it.

(also: mine's "pretty-good-how-are-you?" It got me written off as a drug seeker for two and a half weeks until an enterprising resident in my fifth ER trip in two weeks realized that you can't fake high blood pressure and tachycardia and sent me for a just-in-case ultrasound and they realized my left ovary was growing a baseball-sized cyst. Been there. Ovarian cysts suck. Also had it get me written off as malingering when I was cyanotic from asthma, so that was fun. */sarcasm* )

Mandy Klein said...

Great post! I didn't think I used scripts but after reading about your grocery store script and the nurse, I realized that I do and it also causes me problems. I don't get taken seriously at the doctor either.

PK said...

NT parent needing help with this one. I want to help him find tools for when he loses his words. I appreciate any suggestions for this.

My son is highly verbal, but I know he loses his words when he is extremely upset. He is NOT in ABA (and won't be ever). I've used this phrase more as a general parenting thing - I didn't know about the ABA connection, actually.

99% of the time he CAN use words to communicate. He's very expressive. But how can I help him find healthy ways to communicate when he looses his words? For example, on a play date (which went very well for 95% of it), he was wrestling with the other kids, got scared, couldn't say it, and bit another boy (no blood, no teeth, just pain). He was not punished, just a time-out to calm down. We talked after.

He "gets" that biting wasn't good, but I get that he was scared and couldn't find words at the time. My NT brain just doesn't know what's happening when that happens, so I don't have real suggestions as alternatives other than making some sort of sound to make the wrestling stop (or whatever is going on at the time).

Thank you VERY much!

Neurodivergent K said...

In regards to what to say instead: Pretty much anything else. I'm a fan of "I don't understand. What do you need?" when I work with kids. Because

a) that kid needs whatever it is. It may not be bottom of Maslow's pyramid, but right that second they need to be left alone or they need something to eat or whatever.

b) it acknowledges that communication is a 2 way street. I'm the one not understanding. That isn't just the child's problem.

As someone who loses speech myself, I've been experimenting with wearable AAC. I make says yes/no, & I'm going to have "stop" and "I don't know" when I have the energy. THey've been helpful, as has typing or throwing out cards or signing.

Anonymous said...

I like I don't understand for that, too. Also because it lets the kid know you're trying to figure out what they're trying to communicate. You actually do care enough about the kid to put in effort.

(cuz, uh, yeah - just-spuh-spuh-spit-it-out type stuff sent the message to me as a kid that you didn't care enough about me to put effort in to understand what I was trying to get at, you'd rather just stand there and bully me about my speech impediment.. which is what use-your-words does, too)

When I was a kid, even if I couldn't get it out and the other person had no clue what I was getting at, if they were trying, it was way less upsetting than if they were just basically pointing and laughing.

Anonymous said...

PK--It might help to decide on a "safe word" or a non-verbal signal to use between you, or with other people he's close to, to signal that he's distressed enough that he can't really talk.

For other situations, like with friends or other kids, maybe have a script that he can practice along the lines of "Wait, I need to stop," so he doesn't have to come up with words in a moment when he's panicked.

Anonymous said...

PK, two ideas: I find when I lose words, switching to typing is very helpful. Have you considered getting your son to type stuff out when he needs to communicate?

Also, for wrestling specifically: I strongly recommend teaching all the kids involved the martial arts signal for "let go now because I'm in trouble" - the double tap. Lightly tap your opponent twice in quick succession, or tap the floor loud enough to make noise, or tap yourself loud enough to make noise or say "tap-tap" and in wrestling or other ground styles, that's the universal signal to your opponent to let go. Everyone understands it because it's standard.

That way, it's safe for the other kids (who maybe have someone sitting on their chest in playful wrestling and can't breathe to say "get off"), and something your son can use when he can't word. Plus, it has the added benefit that if your son ever wants to join a wrestling team or martial arts club, he'll know the signal.

Unknown said...

I'm not always a huge fan of what you have to say, BUT I do listen. I use the "use your words" when I get frustrated when I don't understand what my little girls want. I didn't realize how abusive it could come across to the person on the receiving end. When I'm not frustrated I just wait patiently or try to give them options that are easy yes or no questions. Also, all of us learning sign has certainly helped lower the amount of frustration on both side. So much food for thought. Thank you.

Anonymous said...

Ok, I don't have a diagnosis of anything, even though I see myself in a lot of these posts.

But the whole "answering the nurse using a script?" I do this all the time in the hospital and ER. It is not until "are you in pain?" or "what brings you here today" or "anything else bothering you" gets asked that I volunteer what is wrong with me, sometimes at the very end of the appointment. (the "are you in pain/where does it hurt" is also a mixed bag that I have to think about ahead of time (i.e. "this is where it was hurting when I decided to come here"), since the whole movement/change of scenery/stress of making small talk sometimes distracts from pain temporarily). I think I've had the whole "don't speak off topic"/"don't speak out of turn" thing drummed in instead of the "use your words", so unless I get a prompt for what I want to talk about, I don't know how to bring it up with strangers, even if that is why I'm there.

Anonymous said...

I'm very lucky with my GP that as soon as she's greeted me, she always asks "What can we do for you today?" which usually snaps me back into describing-symptoms mode. I still always forget a few things, though.

I don't think I've ever been instructed to use my words. I consider myself lucky because when I'm emotional enough that I can't talk, I'm probably also emotional enough that I could lash out at someone for being that much of a condescending a**hat.

Expletives do seem to come easier than what I actually want to say... almost like my brain defaults to four-letter-words if it can't summon up anything better.

Unknown said...

Wanted to reply, tho this is an old post, just in case others read. Could you work on an exit strategy with him for times like this? Obviously this should be done at a time when you can both happily and constructively work together, rather than just after it's happened. We're starting to use the incredible 5 point scale for this, to recognise approaching "can't cope" moments and work out what to do with them.

Janna Aimee said...

I just found this post now. And it hit me. Big time. I have been using that statement for a long time and never realized how harmful it is. Thank you for making me aware. What are other phrases to use to help students get what they need in place of saying "use your words." Also what are good responses when students are able to let us know what they need? I have used the phrase good job using your words or signs or pictures but is that also not respectful? I am always learning from these communities of autistic and disabled adults and I couldn't be more grateful for that! :)

Morgan Fyfe-Williams said...

Aye... I and my friend have a method... not applicable to all stuff, but it helps us... -
I say... 'Don't worry about words too much right now... If you say things Jumbly that's ok, we can work it out in a bit, and no words is okay too. No pressure for words. We're okay without them for now.'

Sometimes finding and ordering words is like spearing fish that move swiftly.

If I was in a stress induced NV period, anyone saying 'UYW' might get a few very angry words from me, like; 'You taking the fucking piss?' or they might just make me have a bigger meltdown from pushing me to do a thing I cannot at that time, do!