If someone you know struggles to use spoken words to meet their communication needs, it can be difficult to know what you can do to support them. The advice from professionals can seem to be at conflict with what you have read or what you know other families are doing. You may be frustrated as you recognise that the person you support has thoughts in their head, but you don’t know what you can do to help them express their language. Or they may appear as if they do not understand language at all, you may be wondering if there is any point to supporting language development. (Spoiler alert, with the right interventions and communication partners, everyone can improve their communication and, even if they ultimately don’t, the least dangerous outcome is to have provided them with every opportunity to communicate to the best of their ability.)
This is a long post as there are many aspects to cover. Of course, you can skip ahead to how to choose a system, but there is a lot more to communication than the tools. And, in fact, the best system without the right support isn’t going to give your person their best opportunity, so please do at least skim the rest of it and come back to it when you are able. I am also available to help take anyone through what is a complex, but absolutely vital, situation. For those who stay locally to East Renfrewshire I have just started a support group for communication partners, and I am looking for an accessible venue to start a group for AAC users.
What is communication?
A helpful starting point is to consider what communication is and why we do it. Communication is usually an exchange between two or more people. Communication often uses a formal system such as written or spoken words, but it can also be a look or action. The most common reason to communicate is to make a connection with someone. We all need connection in our lives, and this is what makes communication so crucial. At its simplest, communication needs someone to decide the content and method of a message and another person to decode it.
Consider your own communication over the past few days.
Who did you communicate with?
What methods of communication did you use?
Why did you communicate?
What opportunities did you get to communicate?
How do you change your communication depending on the person, place, and tools available to you?
Most people communicate with many people, for a variety of reasons, using lots of methods. We may use many different methods and tools to help us depending on who we are connecting with and for what purpose. Now consider those same questions for the person you are supporting to get their communication needs met.
Who did they communicate with?
What methods of communication did they use?
Why did they communicate?
How do they change their communication depending on the person, place, and tools available to them?
What opportunities did they get to communicate?
Observe whole body responses such as:
body language including movements, position, and posture
facial expressions and mouth shape
eye gaze
different sounds/vocalisations
touch including type of touch
emotional responses
affect
Also note any more formal communication such as signing, use of symbols, writing, or spoken words. You may find it helpful to take a few days to a week to observe and record communication in a table such as this one.
Recorded information can be used to
Share with others to help them understand what someone is communicating
Consider areas of communication that could be improved
Gather information that the person you support is a communicator
This is a document that will be constantly evolving as the person you are supporting develops more communication and starts communicating for different purposes.
Reasons to communicate
Gathering information about the different things the person you are supporting can communicate about can be useful. Kate Ahern, an education specialist for people with complex communication needs, produced this handy diagram demonstrating all the different reasons we communicate.
Some of these reasons to communicate, e.g., expressing future goals, commenting, and storytelling, require a robust communication system.
Communication system
Most of us think of a communication system as a device or book. But everyone communicates in different ways depending on what they are communicating, who they are communicating with and the environment they are in. This is even more essential when the person cannot use spoken words to meet their communication demands. They need a system with multiple components. (There is information on how to improve the different types of communication below.) Systems may include:
Body language
Facial expressions
A way to indicate yes and/or no
Signing/gestures
Paper-based communication resources
Communication book
Speech generating device
An accessible alphabet
Use the information you have gathered from above to consider all the different ways the person you support is already communicating. This can then lead you to consider what you may add to support further, or enhance existing, communication.
Presuming potential
Many people do not get access to communication books, speech generating devices or an accessible alphabet. The reasons for this are varied but often it can be because others make assumptions about their potential as a communicator. Often people are required to show certain attributes, such as an ability to turn-take or an understanding of cause and effect, before being offered access to more sophisticated forms of communication. These practices have been debunked in the literature for 40 years yet remain prevalent in the UK. The truth is, unless a person has had a robust communication system and had it effectively demonstrated for several years, we cannot begin to understand what their communication potential might be.
The problems with people not presuming potential go further than not offering the correct tools. A lack of belief changes the way we communicate with people and leaves the person feeling frustrated and worthless. It can have such a detrimental effect on people that they are unable to communicate even when they want to. This can unfortunately confirm the beliefs that the person cannot communicate. There are several ways that people can be spoken to that are unhelpful. These include:
questioning more than is natural
demanding communication to prove knowledge rather than to communicate their own thoughts
using AAC to control the person and to tell them what to do
using demeaning words and manner
speaking about and not to the person
None of the above would encourage anyone to communicate. The problem is when this happens to an AAC user, and they don’t respond it is presumed it is because they didn’t have the capacity to communicate in the first place, rather than there being little motivation or interest in AAC because of the way it is introduced.
There are many and varied reasons why people may not presume potential, however some of it is also simply human nature. But to give people the best opportunity to communicate we must acknowledge our own prejudices and our inherent need to be right, and then try our best not to act on them!
Not everyone will be aware that they are saying and doing things that can add additional pressure to AAC users. Good communication partners should be aware of what they are saying and how they are saying it. One way to start noticing when your language is not encouraging communication is to start a communication partner equivalent of a swear jar. Anytime you say something should be simplified, you are effectively using the phrase “I don’t think they can”, or if you communicate in any of the above ways, then add a coin to the jar. This isn’t a long-term solution, but it might be enough just to get you noticing so you can rephrase your communication and help change your own mindset.
Now you have a note of the ways the person you know is communicating already, and you have tried to extinguish negative communication, you might be wondering where to go to next.
Communication device or book
It can be difficult deciding on the system to use but these are some top tips on what to consider.A robust device or book should contain:
All word types, e.g., prepositions, nouns, pronouns, verbs, adverbs, adjectives, determiners, conjunctions.
Changeable word forms – e.g., adding -ing, -ed.
Over 300 common (core) words – e.g., can, do, want, like.
Additional fringe words, these are usually nouns.
Personal words - this includes people, places and activities that are specific to the person.
Phrases and other pre-stored messages (even jokes and swear words!) for quick and easy access to common and complex sentences.
Alphabet for novel words and messages.
Words can all be found via navigation buttons.
Room for growth, as communication increases or matures.
There are now many robust language systems out there so people shouldn’t have to create their own. The best system is the one that you, and others, will model and that the person can access. The I-ASC website has free resources that you may wish to consider using for this process. https://iasc.mmu.ac.uk/
You will at least wish to consider the following:
Can they locate YouTube or other apps on a phone? If yes that means that the person is likely to have the motor and visual skills to manage an AAC system.
Do they have limited hand use? If so, then consider alternative access to AAC such as eye-gaze, head-control, switches, or joysticks. This may require support from a specialist.
Visual problems may be addressed with correct spacing, definition and colouring of symbols. A specialist may be required to support.
Are there other AAC users that the person connects with, or does anyone that they connect with have experience of a particular system? Having the support of someone who is already familiar with the system can be of help, especially in the beginning. If not, there are many Facebook groups that can offer help and the providers of apps also have support teams.
When you have decided on your system you will need a way to carry it around with you. AAC users need access to their words wherever they go. Commonly, if it isn’t attached to you or them, it isn’t getting used. Most dedicated devices come with something to carry the system in. If it is an iPad, you can get many cases now that have attached straps. For books you can use ribbons, old ties, camera and binocular straps and harnesses are also very useful.
Modelling
Modelling is the method by which we all learn to communicate. We copy the people who are around us and the ways they communicate. We are primed to support babies and young children to communicate using spoken words. This is why we encourage babbling, smiling, and speaking back. We also shape communication by assigning meaning to sounds and utterances. For example, when a baby makes a “da” sound, everyone gets very excited and believes the baby has said their first word “Daddy”. However, the baby has simply seen the attention and smiles as a reward and therefore wants to repeat this experience.
This is often in stark contrast to the experience of people who do not use spoken words to communicate. Not only do people communicate differently with them, as discussed in the ”Presuming potential” section, but when you are an AAC user you have significantly less models of people using your language.
As well as less exposure to language people communicate in different and unnatural ways. Take a moment to reflect on what differences you have noticed in the way people communicate with AAC users. What does this mean for good practice when modelling?
How to model
1. The recommended approach is to start slowly, so you can build good habits and because it will likely be new to everyone (i.e. the person and all communication partners) therefore be prepared for it to take time for all to get used to doing (and, indeed, it is a good idea to simply spend the first week or so just carrying the device around to identify the practicalities and challenges that will be encountered).
2. If you are using a Core Word based system, you can choose four core words to model in natural contexts throughout the day. I, LIKE, NOT, MORE is the first set recommended by the ASF Communication Series. First locate the four words in the device and model these words throughout the day; you can use them singly or together, although be careful to model only one or two words per sentence to begin with.
For example, at dinner time:
Whilst you are enjoying your dinner, model “I LIKE” whilst saying “I like my dinner”.
Your child finishes and touches their plate, model MORE saying, “oh I wonder would you LIKE MORE?” (or simply MORE)?
Someone leaves something – “I do NOT LIKE that”
During story time, comment on the content, such as:
“I LIKE it, this story is fun”
“Oh no, he is NOT nice”
“I have that too”
For a pragmatic system such as PODD, you can start with the chat words and then build up into using different branch starters or categories depending on the type of book or app you have.
Some people do find it difficult to start slowly. It is okay to jump in but do remember you are modelling using language in a way that you hope the AAC user will be able to replicate. There is no need for long and complicated sentences.
3. Above all things, do not panic! To begin with, using an AAC system feels strange and unnatural. It can be difficult and is certainly not as easy as speaking. However, over time it becomes easier to do and you get more comfortable. Once you are comfortable with the words you are modelling, or the categories you are using, move on to others. Be reassured that children and AAC users are generally much more overwhelmed by AAC systems than talking adults.
4. When you are speaking, you simply think of the words you want to say and then say them, often without much thought process at all. This may be too hard to do using an AAC system. It is therefore normally easier to think about the point of what you want to say and then how you would say that on the system. If you try to model every single word you think of, it is not as easy.
5. To start with, you might choose a time of day to incorporate use of the AAC every day. You could choose bedtime as a calm time, dinner time as everyone is all together, or any other time that suits the family. (A time when you have any time constraints will not work in the beginning whilst you are getting familiar with the system. You do not need to add in more pressure at busy times!) This can then be gradually built up by introducing more words, categories, and other times when the AAC is always used. The aim is to use the system all throughout the day to say multiple messages in a variety of settings (although bear in mind that there may be settings that use of an AAC device is not appropriate. Observe what other people are doing, for example during a horse-riding lesson we noted that no other riders were talking and therefore there was no need to have the device to hand (aside from it also potentially being a hazard!).
6. Comment much more than question. Commenting is a much more natural method of communicating than questioning. However, it is very easy to get caught in the practice of questioning people who cannot use spoken words to communicate. Often the commenting that would happen with babies and other verbal people gets lost and communicating becomes an endless list of questions (and therefore wearying for the person). When modelling AAC it is easier to comment than question. It means that modelling can be done with fewer words and puts no pressure on the person learning the system to respond.
7. Use “think aloud” comments that reflect what the individual communicates with their body. Then use the communication system to talk about it. For example, “I see you clapping your hands, I think you are saying you FEEL HAPPY.” It can be helpful for AAC users to hear how you are interpreting their body language. That way if you are wrong, they can try to be clearer. This means that you are showing the person a different way of expressing what they might be feeling but doesn’t compromise the system if you are wrong. They might have clapped their hands as they were retelling you a story about someone clapping their hands. Do not say “you are doing this so you must be thinking that” – putting words into a person’s mouth can belittle their meaning and can enforce that the system is still open to misinterpretation just like all their other ways of nonverbal communication.
8. All communication is valid. Answer everything that the AAC user says/points to even if it seems to make no sense to you; this is the equivalent of babbling. When you respond, you teach that using the AAC system gets a positive response, and it lets the learner know that their communication is valid and listened to.
9. Don’t forget to have something exciting to talk about. It is much more difficult to use AAC than the spoken word. If someone is going through the effort (which can be physically and mentally exhausting for some) of using or learning AAC then you should try your best to make communication interesting or meaningful.
10. If there is a word that you are trying to model which is not on the system, add it in. If you are using a paper system, write the word on and it can be added into the next version.
Common reasons for AAC abandonment
It takes a lot of effort for many families to get as far as getting an AAC system and to begin modelling the system. Often once they get to this stage, they can think that they have done the hard work. Sadly, that is not the case, and it can take years of effort and dedication to support someone who cannot reliably use spoken words to be heard and understood to communicate. But be reassured that it is worth it. Any advances in communication have a profoundly positive impact not only for the person but everyone they communicate with. Here are some common pitfalls to avoid:
1. Using AAC as a testing tool
We have already mentioned that people question AAC users more often than they do with people who use spoken words. Testing is an extension of this. It happens because we want to know what people can do and what they understand. But that is not why we communicate. No-one needs a book or device that makes us do things for no real reason. Make sure AAC does not fall into that category.
2. Using AAC to tell people what to do
This is another common pitfall, generally parents and teachers are used to having to give instructions to people. Sadly, disabled people have more people trying to direct their lives than the general population and, therefore, they may have more people who might make this common mistake. The message is clear, model all the words you say. But can you imagine having an extra thing to make demands of you? This makes AAC very unattractive. Try to remember that you are modelling words and phrases that the AAC user can relate to and will want to say. That is much more likely to be things like not yet, that is not fair, or give me 5 minutes, rather than go upstairs, time for bed, brush your teeth, lights out. A good rule of thumb is to only model the words and phrases that you would want to hear. You can model instructions in a less confrontational way through play or discussing TV, film, or music.
3. Listening to negative people
If you have a team of negative professionals, family members who don’t believe in AAC and someone who is taking a while to respond to modelling it can lead to you doubting yourself. This is a very difficult situation to be in and it is understandable that people do stop modelling AAC in such circumstances. Try to reach out to AAC groups on social media, or if you are lucky enough to have one locally. You are not alone.
4. Guilt
Guilt stems from our need to be part of a group for survival. It can make us realise things we have done wrong so we can apologise and amend our ways to stay part of our tribe and therefore safer. But guilt can be misplaced and/or lead to unhelpful behaviours. If you have not modelled everything you could and should have, guilt can stop you from moving on, accepting your mistakes, or lack of time and moving past it. The truth is we all go through phases when we model or update talkers less often, so please be kind to yourself and then get back to it. Even if there has been a long passage of time, it is never too late to start up again. Consider support groups, as above.
5. The wrong system
This is not a common reason for systems being abandoned, but it can be an excuse when one or more of the things above has happened. However, it is not unheard of and there may be vision or motor access requirements that were not obvious before a decision on AAC was made. If you think this is the case, reach out for help before abandoning the system altogether. Occasionally people move between core systems e.g., Proloquo2Go and systems such as PODD with success. However, it is unsure if this is because it was easier for the people modelling and they got more opportunity to learn, rather than the people themselves. Again, it can be worth reaching out to others for support.
Each of these reasons for abandonment can be fixed, communication is never a lost cause. Hopefully, you have picked up enough information to move you along on the next step of your communication journey. I support AAC users, family members, support workers and professionals. I work with people a wide range of diagnoses. I firmly believe that everyone can improve their communication and that with the right support and belief everyone can become a good communication partner.
If you need some further motivation these quotes are from AAC users and their parents.
Quotes
"AAC has allowed people to begin to see just how much R understands and how bright she is. No one ever believes she understands anything until she says something that cannot be a coincidence, like when, just after she first got her eye gaze, she went to Tim Horton’s with her school and navigated her device to find “Canada”. Or more recently, when she told her psychiatrist that she didn’t want to talk about her feelings." Mum to 18 year old AAC user.
"I use my talker to tell people when I am frightened. I like using my fun greetings and goodbyes. My weekly planner let's me know what is happening." 16 year old AAC user.
"AAC has opened up my daughter’s whole world to us. It gives her the opportunity to share her thoughts and opinions as well as giving her an independent voice and autonomy" Dad to 17 year old AAC user