Those of you who know me probably won’t be surprised that my first post will include a rude gesture! But for others, welcome here – I’m really not quite as evil as people seem to guess I am from my blog posts, and I hope you stick around long enough to figure that out! So…on with the post.
At Autreat 2012, I spoke on designing asssistive technology (or, more specifically, how NOT to design it). One of the points I brought up is the need for a complete communication system for everyone. I’m not talking about the need for specific technology, but rather a combination of methods for someone to communicate.
I didn’t get too much into what communication should consist of. Yet, too often, the what is overlooked while the focus becomes the how. Focus becomes “how can this person communicate,” rather than “what should this person be able to communicate.”
Communication improves our quality of life. But what is the “what” of communication?
- The ability to change things
- The ability to express emotion
- The ability to inform others
That’s what it’s about, at least to me. For me, as a part-time speech user (who is using speech probably 99% of the time right now), I feel I have good command of all three of these things. That said, my ability to express emotion is best accomplished in writing and through keyboard based augmentative communciation devices. I can’t say what I feel with my natural voice, but I sure can with a keyboard in front of me. And I’ve learned that’s okay.
But, even more important than emotions is the ability to change things. And there are several things that are so important that I don’t think any communication system should exclude them. Sadly, I’ve seen too many children who are emerging communicators denied the ability to change things – particularly the important things.
I’ll be getting more into this in the next few posts. But I’m going to start with “No.”
The ability to say “NO!”
Everyone needs to have the ability to say “no,” even when it is inappropriate and there are consequences to the “no.” The word “no” has tremendous power. Most children learn “no” (or an equivalent) at a very young age. Yet, “no,” has shades of power to it that go well beyond the power a 3 year old may be able to muster.
It can share an emotion, such as sadness, loss, or anger. The word “no,” uttered in a forceful way, can show the true depth of emotion a person has about a situation that they don’t like (or which even is harming them). Picture a meeting of support workers for an adult autistic person. During that meeting, lots of words are flying about, lots of concepts, and lots of legal and social-work jargon. Imagine now that the autistic person, already overwhelmed, pulls back a bit and can’t figure out how to insert himself into the conversation. A loud shout of, “NO!” or “STOP!” can bring the meeting to a crashing halt and allow that autistic person to hopefully now insert themselves back into the decisions involving their own life. That’s the power of emotion.
It can demonstrate a boundary. Sadly, many autistic people are abused (most statistics show the vast majority of us are sexually abused as children). “No” can show incredible power here, too. After all, “No means no.” In the US, the phrase “no means no” was coined as a way to express, “No, it’s not okay to rape your girlfriend, she has the right to say no.” Similarly, even an autistic kid who can express “no” could stop some abuse just by putting up a clear boundary. This type of communication is vital. Sadly, not everyone will respect the boundary, but there are some people who will claim ignorance of the existence of a boundary without the boundary being expressed clearly and concisely.
It can also express choice. One of the easiest things to teach someone about language is the power it gives them to change their environment. But this only makes sense if the person is allowed a choice in things, and, particularly, allowed to say “NO!” It might be motivating to a young child to ask, “Do you want to play with the puzzle or the doll?” But it might be even more motivating for the child to say, “NO!” if it can have an impact on the child being able to avoid some activities they don’t enjoy. Power is a tremendous motivator – all of us want power in our own lives. And that legitimate need for control in our own lives can be a powerful motivator for further communication. But it has to start somewhere.
Now, “NO!” doesn’t need to be spoken, screamed, or even written. In fact, almost everyone knows a way to say “no” already. It’s equally important to listen and respect that person’s way of doing so. Certainly there are appropriate and inappropriate ways of saying no, but and sometimes saying “no” won’t get you out of something you need to do. But the ability to express that is important, as is the willingness for people to listen to it. If a person can grunt to say no, and it’s unambiguous, there’s no need to teach lots of language just to say something they can already communicate. Focus on the nuances, not the concept of “no” at that point! And listen when the “no” is communicated, however it’s communicated (as I’ve said, this doesn’t always mean going along with the no – but rather it simply means listening to it and responding appropriately).
So, the first thing I look for in a communication system is simple: Can the person say