4/29/2013

Describing Communication Levels when Woo Mixes with Legitimate AAC

Definitions for most terms relating to autism-land vary depending on the persons and groups using the terms. Biases are clearly at play here.

To some, autism and Asperger's aren't kissing cousins and don't belong anywhere near each other. To others, they are one and the same, on a continuum.

Functional levels vary, along with the terminology used to describe those levels. There's no clear consensus on what high, low, mid functioning are and what's required to be there. Where does intellectual disability fit in the functional levels? Again, depending on who you are and what flavor of autism is in your life, your belief about autism and intelligence will vary.

It's the same when it comes to terms like preverbal, nonverbal, and verbal. If your child uses sounds to communicate needs and emotional states but not formal language, is she preverbal or nonverbal? How many sentences, how long must they be, and how many words in her vocabulary must a child have before she swings from the non-verbal category to the verbal?

If a person can talk but chooses to use AAC instead, is the person properly nonverbal or verbal? Who gets to decide? Who gets to do the describing?

Autism Speaks (only because it was convenient) describes nonverbal persons as unable to "functionally communicate with others using their voice."

I guess that means that if a person is capable of using his voice, speaking words, but impaired in communicating needs and wants, that nonverbal could be used even if the person actually has an array of words, can string sentences together, and make himself at least understood in the sense that the words are understood.

With facilitated communication, as taught by Biklen and associates, an autistic individual can have a range of oral/verbal communication, can even type independently, and still find himself being facilitated. The person can even be talking at the time of facilitation, and the facilitator will strongly advocate that it is the facilitated text and not the speech that should be attended to. Well, that certainly makes the describing process interesting, doesn't it?

Who gets to decide if a person is nonverbal or not? Those in a position of power over the individual, apparently. That means parents, caregivers, treatment providers. That can come in handy if the vocal utterances counter the written communication, certainly, and becomes another way that autistic individuals are denied autonomy. But most people aren't in this particular situation, as FC remains outside the norm (although if the media keeps sharing the feel-good stories without engaging the sniff-test, that may change).

With one of the major descriptive categories of autism being impaired communication, even the most eloquent and loquacious of autistic persons might have some difficulty with making sure their speech is suitable functional--that it communicates what they want it to and that the message is received intact by the listener. Let's be real, though--that's true of all of us, no matter where we fall on the spectrum or off it.

So, again, how do labels like nonverbal and verbal get assigned? When is it a shorthand by parents to indicate limited speech and when is it an exaggeration? I mean, if a person has limited speech, then why not just say that?

What if a person is not only lacking the ability to communicate verbally in a known, taught language but also lacks written language? AAC devices and PECS are so important for allowing for needs and wants to be communicated.

Does it matter if our descriptors of those in our care are inaccurate or changing? If there's a lack of consistency?

I think that, just as the issue of intelligence is one of serious controversy in the autism community, so too is the issue of one's verbal or nonverbal state. Whatever the communication method, whatever the level of fluency is, it's important that we try to be accurate and specific in our descriptors.

And some times, many times, that means defining what we mean.

Bobby was nonverbal when younger and severely delayed--he had utterances,and two specific utterances that he used to communicate a variety of needs, but it wasn't until he was four that he began to really speak English. His speech is still impaired, and in some cases, he has a pronounced difficulty communicating. Giving him a device to write isn't going to help since he has a hard time spelling. I suppose I could grab his hand and guide him, but I think I'd get put in my place quickly if I tried. And those who know Bobby and who are lucky to talk to him about his interests will have no idea whatsoever that he has an impairment when it comes to communicating.

Ask him to describe where something hurts, though, or name body parts, and you'll find out he's got some significant communication gaps. Move on to feelings, and you'll really see it. Ask him to talk to someone he doesn't know about a topic that isn't a special interest, and you see him at the height of his autism.

Rosie, at times, chooses not to talk. Does this make her nonverbal? She could talk if she wanted to. She's not being defiant in her refusal, but all the same, she's not going to talk unless it suits her. Since she can use speech to functionally communicate her needs, wants, opinions, and disapproval, her choice to sit out verbal communication would not indicate her being nonverbal overall and I think it would be inaccurate to label it such when she chooses not to speak.

Now Lily can get completely overwhelmed and not be able to talk--she just shuts down. Is that nonverbal? Again, I don't think so.

I think that if we're going to be precise when we talk about our children, we need to be willing to move past one word descriptions that are unavoidably inaccurate. If our child speaks, communicates simple wants and needs with oral speech, then it is inaccurate to describe the child as nonverbal, unless it's nonsense syllables. If he's saying milk for milk, water, etc., you've got the beginnings of speech, and that, my friends, is not nonverbal.

If you've got a teenager talking away and a facilitator holding him by his hand and there's typing going on that contradicts what the teenager is saying, you've got woo, not his true communication.

Being careful, taking the time to accurately describe our children's ability to communicate (in any of the many ways there are to communicate) is important, I think, not only when we're working with teachers, caregivers, providers, etc., but also when we're putting our story and our children's stories out there, when we blog.

It can be convenient to shorthandedly label a child as nonverbal in order to indicate severity, but ultimately it's a disservice to the child if it's inaccurate. After all, it's not a competition to see which of us has it harder or easier. Our children's autism isn't really about us--it's about them and we owe it to them to be accurate.


7 comments:

farmwifetwo said...

I use non-verbal to describe Russ since he does not talk to strangers. Everyone I have explained my reasoning to... Including the hospital during dental surgery visits agreed.

Yet on Fri the psychologist was adamant he had to have a word count. Definitely new to her PhD, I had to explain that non-verbal didn't mean without language. He went with her for an hour today and the teacher was also planning on explaining ASD to her as well today.

K Wombles said...

That makes sense--he's effectively nonverbal when he's around strangers, which is where the ability to speak is going to matter. And you're explaining it, and what you mean by it.

If his effective word count with strangers is zero because he can't talk, then it's zero. I suppose you could do a separate word count for when he's home or at school and in his comfort zone, just to make the discrepancy more clear.

It's like I used to say about the kids' functional levels at home versus at school, appts or in public. It doesn't matter what they can do with me around--it matters what they can do when I'm not there, when they're out in the world.

farmwifetwo said...

I told her he has a full volcabulary. He does. It's amazing what pops out when he does talk and write. Yes sometimes you have to play crossword puzzle since he gave you the 'clue' but he does 'talk' in short phrases when he has something to say. The topic.... Anything.

Dixie Redmond said...

This is so interesting and so complicated, Kim. I see the variations of communication depending on the setting, and also on how stressful life is.

Stephanie said...

Something to think about, definitely. Do I accurately described my children's abilities/lack of abilities on my blog?

I know when I talk to teachers, therapists, and what-not I get more explicit.

For example, I describe Alex as nonverbal, and then qualify it with the few rare moments (we're talking months, even years in between) when he actually successfully communicated something verbally. Like the original "watch byes" to let us know he wanted to watch the end-credits of the video again...and again. He was able to say it, to spell it out in block letters, and even to write it.

But he cannot consistently do that and hasn't said anything so blatantly communicative in years.

The distinction, however, is important, because it indicates that he is able to communicate, but that (presumably) something interferes with that ability the vast majority of that time. If we could figure out what is interfering and stop the interference, then he could (presumably) communicate more regularly.

Yet, Alex is still essentially nonverbal, because the interference is very much there.

Ben is a bit more murky. He has a lot of words now and sometimes he can communicate quite successfully with them, though he rarely uses full sentences. He relies on "more," "help," and "all done" most of the time. Sometimes he spouts of video or story segments that reveal his need, but leave the decoding to us. Other times he clearly wants to communicate, is clearly frustrated that he can't, but the words aren't there.

I usually categorize Ben as verbal, but significantly delayed.

You're right, though; we should be more clear and more accurate when communicating with each other. On the other hand, sometimes the shorthand just makes more sense. Sometimes the severity of the interference with communication isn't the point.

I mean, one thing I try to express on my blog is that, yeah, Alex is nonverbal, but he does communicate and it's important for the people in Alex's life to be willing to "listen" in the ways he can communicate.

K Wombles said...

Dixie--absolutely, communication skills are so situationally dependent, even for those of us who are not communication-impaired!

Stephanie, I think that, yes, shorthands have a place, but in the comments here and on facebook, going into the greater detail has been fascinating and helpful--it's allowed for rumination, for the airing of concerns, and for a better picture of what our children can do and what they can't and how we're trying to engage that.

Sometimes, the shorthands shut down communication--and yes, yes, yes, the way our children communicate without words--that is often so much richer and more meaningful, and people miss it because they were looking for verbal communication.

Stephanie said...

As a community, sharing more detail is definitely important, especially when we're trying to supplement or replace an inadequate "professional" support system.

Over the years I've gotten more ideas about how to understand and accommodate my children's needs from people in the greater autism community than I have from the professionals, and it's often the more detailed discussions and ruminations that provide the most insight and the most help.