Communication is more than needs and wants:
Communication has very many functions. Sadly with people with disabilities, communication can often become unidirectional in which the focus largely shifts on following instructions, requesting and meeting basic needs and wants. Communication is much more than simply fulfilling needs and wants. Let’s take a look at Maslow’s hierarchy, which can show us that how fulfilling needs and wants may mean that we provide an environment in which we keep people with communication disabilities limited to very basic level/s, hence preventing them from achieving their actual potential.
Image Courtesy: Vecteezy
So how do we make sure that we fulfil people’s communicative needs? Let’s take a look at some of the many functions of communication.
People with communication difficulties find the functions of communication generally difficult when we look at the communication functions in counter clockwise/left to right direction. A good communication system should ensure that it provides people with sufficient vocabulary across all functions of communication.
Choosing communication vs behaviour for expression:
If we can communicate what we want to, and there are people who understand us, we do not need to use the behaviours to communicate our messages and feelings. The first choice for everyone is to use communication but imagine if we are trying to communicate but our communication partner does not seem to understand us, we may resort to using the behaviour to communicate. Have you ever felt frustrated trying to explain something to someone and at the end you gave up i.e hanging up the phone, walking away, sighing, using facial expressions etc.? The latter are all examples of using behaviours when the communication fails.
People without communication difficulties use communication as a primary way of interaction and expression. It is only in the absence of good communication channels that people may use behaviour as a primary way to express themselves.
But now imagine how a person with communication difficulties who may have no/limited access to vocabulary, people making assumptions about their abilities and capabilities; the communication channel is either absent or largely limited. As a result, the primary means for such people to communicate is behaviour.
Communication by using behaviour comes with limitations. Not every behaviour can be universally interpreted and understood. For example one of my clients rubs his hand over his tummy to indicate that he needs to go to toilet. People who do not know this person very well have often over fed him thinking that he may be hungry. Using behaviour to communicate requires considerable effort and comes at the risk of losing social interaction, which means further isolation and deprivation.
Introducing Augmentative & Alternative Communication (AAC) for communication empowerment:
If we provide communication aids to people with communication limitations, the behaviours can gradually be replaced by communication, which implies reduction in challenging behaviours and more independent communication skills. For the best purposeful communication and interaction, we need to provide communication system that can enable 2 way, back and forth conversation and communication between people with and without disabilities.
When we discuss the possibility of AAC to the stakeholders, often the discussion is met with some sort of resistance. For some AAC is a very foreign concept, for others it often comes with a perception of disability or because people supporting and interacting with people with disabilities have become used to interpret and respond to behaviour as a way of communication, they think that they understand the behaviour so what’s the need of incorporating time and energy in learning and teaching AAC? Sometimes people also think that the individual with disabilities is too old to learn to use AAC.
The reality is that AAC is everywhere in our everyday life. From our traffic lights system to mobile phones, we rely on non-verbal communication to understand, send and receive messages. Even using a microphone in a large hall is a simple example of how an AAC enables successful communication. So neither using AAC is a foreign, totally new concept, nor there is something to feel ashamed about. With the advent of portable devices and availability of communication software on smart phones and portable devices, there are possibilities of using AAC without worrying about appearing odd man out. There are many stories throughout the world where the AAC users have achieved great achievements in their lives including finding their life partners.
One client that I work with, could read and write but when given a communication software on the iPad indicated that he wanted to have a guitar and a bike to ride. It turned out that this client used to have a bike 5 years ago which broke down and no one replaced it. Likewise, more than 15 years ago, the client used to ride a bicycle which was at his mum’s place. For more than 15 years, no one could ever know what the client wanted. Just having the vocabulary and the pictures on the AAC software enabled the client to express what he wanted as well as talk about things that were not present here and now i.e. past and future. The moment he got the guitar he went inside his room and started playing guitar with the guitar pick. I could not believe that how since the past 5 years he had held on to the guitar pick in the hope that one day he will get a guitar. Getting him an AAC system helped him achieve one of his many wishes and dreams.
No one is “too old” to learn AAC. Imagine before the millennium, we did not have social networking websites. If people did not let us use computers, mobile devices and communicated with us using these systems thinking that we are “too old”, how much left behind we would have been?
Hopefully these examples may inspire our stakeholders to see the benefits of using AAC. Let’s take a look at how AAC can empower someone and make their lives easier. Towards the end, you can find benefits of using AAC in a picture format which can be given as a handout to the stakeholders.
Comprehension: A picture is worth a thousand words. During times of stress and anxiety, word retrieval process can get affected. Having AAC system can facilitate better understanding as well as aid word retrieval.
The verbal communication is transient, the moment we say a word, it is lost. People with attention or sensory difficulties can lose track of the task and conversation, having an AAC system such as using visual or a task list, can help them focus and follow the conversation.
Language and speech: This is how the language may look to someone who does not know how to read the language or has difficulties understanding what is being communicated to them.
Now let’s take a look at the picture again, this time just adding one visual to the image:
Just adding a visual helped us understand the message. With AAC, we use pointing, looking at the visual, listening to the word being spoken on a speech generating device; all of these features involve our multiple senses which we incorporate to our communication. A person with attention, memory or sensory difficulties can gain additional information through using AAC, thereby providing compensation for such issues. Sometimes having more sensory components in AAC system such as auditory output may facilitate easy pronunciation of the words because of the possibility of repeated hearing and exposure to the words.
Word knowledge=World knowledge. The more words we know, the more concepts we have. Think about the words such as a black hole. Just having the word in our vocabulary helps our understanding, imagination and knowledge. There are studies which prove that communication and cognition fuel each other. Therefore limitations in vocabulary are not only communication limitations but also lead to cognitive limitations.
Similarly people with speech intelligibility issues can use AAC to communicate effectively and clearly i.e. hand gestures or a microphone.
Independence with tasks: Again people with vocabulary, memory, attention and sensory issues can benefit so much from having concrete steps laid out in front of them how to do simple everyday tasks. If we do not offer them supplemental information, we are increasing the care load on everyone as someone always needs to be there to help such people by doing things for them. Simply numbering the steps in correct sequence can help the individual to develop independence.
Self expression: One of the important things when it comes to expressing how one is feeling is that are they aware of the vocabulary used to express emotions? One of my clients over the age of 55 years did not know the word “anger”, or another one who does not know the word “pain”. As a result, both have used challenging behaviours to express how frustrated they felt in difficult situations. Imagine if you were feeling something and you had no words to explain what you were feeling to anyone? What would you do? You may try to use some gestures or facial expressions to express, but what if these facial expressions or gestures were not understood by anyone? Because of your “strange” behaviours, now people have started to isolate you. How frustrating it could be. This is how it might be for people with communication difficulties.
One of my clients who has emotional regulation difficulties used to rank every problem as 5/5 in terms of severity. When we introduced the visual of size of problems, he quickly re-rated his problems with majority of his problems at 2 and 3 level out of 5. Just having a small visual helped the client and people around him.
Decision and choice making: Often people supporting individual with disabilities offer choices based on their understanding of the individual with additional needs, or sometimes people offer 2 or 3 choices. This might not be really what the individual actually wants. What if your favourite colour is green and people offer you only a choice between blue and red? In a way you will be forced to make a selection between the two items and what may happen if both the colours offered to you are not your favourite? Chances are that people may stop offering you choices altogether because you do not make a choice. And you cannot communicate that you like green because you have communication difficulties.
Giving an AAC system that enables the individual with disabilities a variety of options to choose from and make their own decisions is actually empowering the individual and giving them the right to make their own decisions.
Social interaction and relationships: Man is a social animal. If people supporting the individuals with disabilities only fulfil their basic needs, in a way they are keeping the individual really limited to the basic level in Maslow’s hierarchy, as discussed above. I had a client who used to wave bye everytime I saw him. Everyone including me thought that he did not want to engage and subsequently we could not work more than 5 minutes with him. One day I decided to use a communication software with him. I was thinking that the client will possibly push away the iPad as he “appeared” not to engage with anyone. When I showed him the iPad with communication software, he engaged with me for more than 30 minutes.
What was happening was that he wanted to interact and communicate, but possibly the only gesture he knew was “bye”. He kept using it in his hope to communicate and interact, but everyone else including me, thought he was expressing that he did not want us to be in his space. Once he had access to more words and vocabulary, his communication and interaction increased from 5 to 30 minutes in just a single session.
Another commonly seen behaviour is when the individual with disabilities keeps asking the same question or keeps coming asking for the food even though they may not be hungry. There is a tendency to interpret the behaviour on the surface but in reality they may only be coming to you to seek social interaction. They are using the currency/vocabulary of the behaviour as they know that you respond to it. So if you use AAC system, they may use pointing, visuals or words to communicate what is in their mind, instead of using their behaviour.
There is also a concept of an imaginative social cup which means that everyone has a innate need for social interaction. Some of us may have larger need for social interaction (extroverts) compared to others (introverts). When the need for social interaction is not met and people feel “thirsty”, they would seek and create more opportunities to get their needs fulfilled. For someone with communication limitations, using behaviour as a vocabulary to meet their social needs might be the only way.
Share information: Janice Light found that as we reach secondary school and onward, our communication largely focuses on social interaction and sharing information. By keeping focus on fulfilling the basic needs and wants, we might be preventing the individual to meet a large gap of their communication needs. Think about your general discussions e.g. a nice movie you saw, things you did on the weekend, the weather, your holiday plans etc, all of these are largely sharing information and social interaction functions of communication.
If a person with disabilities goes out on a community visit and they really enjoyed, can they share that information with their families? We often take pictures and put them on social websites because we want to share that information with our friends. But can the person with disabilities and communication limitation do it as well?
Protest/Ask for help: Sadly people with disabilities and communication limitations are at risk of abuse, neglect and trauma world over. Can they communicate “No” and “Stop” in risky situations? Can they ask for help if it’s dangerous? Can they make a phone call or send a text message? Or in simple everyday situation, can they tell us that they want one more teaspoon of sugar in their tea, or their milk to be slightly more warmer? If not, then chances are that they might be drinking it without being actually happy or they may refuse to drink it altogether because it doesn’t taste the way they want it to be. As a result of the latter, people may stop offering them the tea or milk thinking that they do not like it.
By using AAC, we may see decrease in:
Vulnerability of the people with communication difficulties: They can share information, they can communicate “No” and “Stop”, ask for help and know what to do in risky or unhappy situations.
Levels of stress: Once the individual with disabilities can fulfil their communication needs, express how they are feeling, understand and be understood, make sense of things around them and talk about things that are important to them, their levels of stress may start to decrease.
Social isolation: By giving vocabulary and a mode to communicate, we open their doors to the world where they can communicate and talk about themselves.
Constant need for reassurance: If the individual is seeking constant reassurance or asking the same question, facilitating and augmenting their communication by simplifying information to aid their comprehension, building their vocabulary can help them to make sense of things. Similarly they may not need to use their behaviour of seeking constant reassurance or asking for food as a way to seek social interaction.
Communication partners making assumptions: If the individual with disabilities can make their own choices and decisions, express what they may want e.g. 1 or 2 teaspoons of sugar in their tea, the communication partners would not make assumptions that the individual does not like tea. The person with disabilities can actually communicate what they are feeling and going through if they have a communication system in place.
Here is a pictorial summary of the benefits of using AAC system.
To download PDF version, please click here.
Written by Muhammad Wasif Haq (2018)
The page is a part of Cool Bluez