The Autonomy Bucket Challenge

Now think about the person you know who has CCN.

How does their balance scale look? Often we see the autonomy marbles are in short supply, and the opportunities to collect them are even less. So our challenge is to balance the scale with autonomy marbles whenever we can. 

Jasmine is a 12 year old girl. She gets up at 7am, eats breakfast and gets ready for school with the help of her parents. She catches the bus to school, arrives at 8:45 and plays in the yard til class starts at 9am. Jasmine communicates using speech and between 7am and 9am when she starts class, she is pretty much talking constantly. Anything she needs to say or tell people is autonomously spoken as many times as she chooses to say it, and often that is multiple times until she gets the response she wants, or has to change the subject. Maybe she had a bad dream, maybe she is excited about the chicks they are bringing into class today, maybe she forgot to bring her excursion note. Luckily she can tell anyone and everyone if she chooses. When she sits down for morning group and the teacher asks her questions, she is happy to answer as she feels like she has been heard and had a chance to say what she needs already.

She has already filled her bucket with autonomy marbles. 

Jenna is a 12 year old girl. She gets up at 7am, eats breakfast and gets ready for school with the help of her parents. She catches the bus to school, arrives at 8:45 and plays in the yard til class starts at 9am. Jenna communicates using AAC and between 7am and 9am when she starts class, she is pretty much thinking constantly. Anything she needs to say or tell people is in her head but she has to wait until someone has the time to sit with her to listen, or remembers to get her device off charge and have it available to her. Her parents are great but given her extra needs, there is a lot more to manage in the mornings and the accessible bus comes really early! Sometimes when she is not in her wheelchair, she needs others to scan on her PODD when she has something to say, but lots of people don’t notice when she wiggles her body to say “Hey, I’ve got something to say”.  Maybe she had a bad dream, maybe she is excited about the chicks they are bringing into class today, maybe she forgot to bring her excursion note. Unfortunately she can’t always tell anyone and everyone if she chooses. When she sits down for morning group and the teacher asks her questions, she might use this as an opportunity to talk about her bad dream, or maybe she has learned that she doesn’t fit in here, or that people won’t take the time to listen so she just listens but doesn’t participate.

Jenna needs some autonomy marbles in her bucket first if we want her  to successfully participate in her class activities. 

How do we do this?

Of course, there will be situations where we need compliance both in behaviour and communication. All of us need to answer questions and make simple choices regularly throughout our week (e.g., “Are you dining in?” or “Do you want pasta or sandwiches for lunch today?”), but we should focus more on finding as many autonomy marbles as possible to balance out the scale. We call it the Autonomy Bucket Challenge for those who are communication partners to people who have complex communication needs, and here are some ideas…

At first, autonomous messages may not always be expressed in symbolic form. We may need to watch and listen for examples of autonomy and then model the language that maps onto what they are already telling us with their body. Other times we may need to wait until the person shows us they have something to say rather than just asking them a question or trying to get them to say something. 

For those who are already using symbolic language within their AAC system, try to cut back on yes/no questions and just give  them an opportunity to share something, or at least ask an open rather than closed question. Maybe you could even just tell them something that’s on your mind and then give them a chance to take a turn in the conversation – or not if they choose not to, it’s up to them. 

Another key technique is to let go of your own agenda. To quote Daniel H. Pink, “control leads to compliance: autonomy leads to engagement”. Oftentimes,  AAC systems are used to find out what we want to know from a person rather than what they want to tell us. Consider Jasmine again, maybe we ask her “What did you do at school today?” and she ignores our question saying “My friend got a new puppy?” She is more interested in talking about the puppy than what she did at school, and will become less engaged if we keep trying to talk about school rather than the puppy. 

Though we may often think that we know what a person is going to say, quite often we are wrong. If we make assumptions about what someone who uses AAC  is going to say,  we tend to only give them the chance to say what we thought they were going to say, not necessarily what they wanted to say.

This might happen if:

• they have limited access to a wide range of words, 
• we miss key body language or other information because we are focused on our own predicted message
• we over extrapolate their message without checking if that’s what they meant, 
• we view a message as a ‘fluke’ or ‘mis-hit’ rather than their message because we didn’t understand how it related to anything, or
• we don’t see the connection between what they say and the current conversation or context.   

So take the challenge and see where it leads you. Think about ways that you can find autonomy marbles for the person you know who has CCN. It’s okay to include some compliance marbles along the way, but just put an autonomy marble in the other bucket first.

Here are some ways you can do this:

• Ask someone with CCN if they have anything to tell you, or ‘What’s on your mind?” before you try to get them to answer your questions, or tell you something on a topic you have chosen. 
• Limit your questions and use statements instead. “Wow, check out the weather today”.
• Give extra time, or pause after you say something to see if they have anything to say or add.  Watch for signs that they agree, disagree, or want to say something else. 
• Acknowledge that autonomous communication does not have to be words, symbols or signs but could be expressed through gesture, body language or facial expression. Tell them what you see and what you think they are telling you. 
• If you are using visual schedules or First/Then visuals, acknowledge what they might be telling you first before you tell them what to do. For example, ‘it looks like you are saying I don’t want it’, ok well maybe first we can do this, then we can ____.” 

Just remember that we all need autonomy. If we don’t get it one way, we will look for it elsewhere. If you don’t let individuals say autonomous things they will exert their autonomy another way and this may be through body language, resistance, avoidance or even challenging behaviours. 

There are so many ideas and strategies to encourage autonomous messages,  we can’t put them all into this blog. Hopefully, we’ve just given you some thinking points for reflection. What we know for sure is that autonomous messages are the ‘Gold’ that we seek as we support those who are learning to communicate using AAC. The more marbles in that Autonomy bucket, the more they will be motivated to express themselves more frequently and with greater sophistication. 

When we hear what someone is thinking rather than just what we want them to say, we learn who they are, we connect with them, and we have true conversations. As we gather autonomy marbles, we better understand our children, we better teach our students, and we can better support those people we are paid to assist.    

 Now think about the person you know who has CCN and take the Autonomy Bucket Challenge!