First Steps

Everyone NEEDS to communicate...
Everyone DOES communicate...

    Imagine you are a person with severe and multiple disabilities, such as physical and learning difficulties, or visual difficulties and no speech. How would you feel?

    You might feel alone and confused about what is happening around you. You might not understand what people are saying to you. You might be trying to ask for something but feel as if no-one is listening to you. You might feel frustrated and angry. Or you might feel depressed and give up even trying to communicate.

    Your body language, the noises you are able to make (e.g. crying, screaming, groaning), your facial expressions and any gestures you are able to make (e.g. grabbing people or things, throwing things, spitting) are the only way you might have to communicate – but no-one understands you!

    You most definitely are communicating, but the problem is teaching other people what you mean. It would probably be helpful if you could be taught a method of communication which could be understood by all the people you are likely to come into contact with. It would probably be useful if you, and the people you want and need to communicate with, learn some form of augmentative and alternative communication (AAC).

    This page provides some ideas about developing an AAC system for an individual with multiple disabilities.

The Communication Partner

    Communication is a two-way process. The person ‘listening’ (the communication partner) is as important as the person ‘speaking’.

    When developing a communication system with a person who has a number of disabilities, the communication partner is very important because they interpret the reactions of the individual to different experiences.

    Every movement, gesture and vocalisation has a meaning. Understanding all of these takes time, patience and a positive attitude towards the individual’s ability to communicate. (Please see Focus On…How to be a Good Listener.)

Yes & No

    Finding out how the person indicates ‘yes’ and ‘no’ might seem really basic, but it is very important. If the person is not able to speak, they will not be able to say “yes” or “no”; depending on their physical abilities they might not be able to nod their head for ‘yes’ or shake their head for ‘no’. It is very difficult to have a conversation with someone, to ask them a question, or even to find out basic information – for example “Does it hurt here?” – if you cannot understand their communication for ‘yes’ and ‘no’.

    You might have to say to the person, “Show me how you say YES”, “Show me how you say NO”. People who are not able to speak have developed a whole range of methods for indicating ‘yes’ and ‘no’, for example:

    • looking up for ‘yes’ and down for ‘no’
       
    • blinking their eyes once for ‘yes’ and twice for ‘no’
       
    • a tight fist for ‘yes’ or an open hand for ‘no’
       
    • pointing at the words ‘yes’ and 'no' printed on cards
       
    • moving their foot up for ‘yes’ and keeping it still for ‘no’

    Finding a system for signalling reliable ‘yes’ and ‘no’ that can be understood by a range of people can take some time. However, it provides a good starting point for future communication.

Using Signs and Gestures

    Signs and gestures provide a visual clue to what is being said. Some people with severe speech difficulties also have problems understanding and remembering what is said to them.

    Signing and gesturing as well as speaking can provide the individual with additional clues which can help them to understand what is being said. For some people body language, gestures and signs might be the most effective way they have to express themselves.

    The leaflet Focus on…Let your Hands do the Talking provides information on using signs and gestures as a method of communication.

Using Objects

    Real objects can be used to encourage people to choose; for example, holding up a bottle of Cola and a bottle of orange to give someone a choice of drink. Objects can be used to let an individual know what is going to happen; for example, letting someone feel their swimming costume before putting it in a bag might let that person know that they were going swimming. Objects used in this way are sometimes called ‘objects of reference’.

    If you are using objects of reference as a means of communication you need to think about how that object will make sense to the person you are using it with. If you are not able to see, then a toy car bears little resemblance to the experience of going in a car. You cannot see that the toy car is a miniaturised version of the real thing. It does not feel like a real car, it does not sound like one, smell like one, or feel like it does when you are motoring along. It would be better to use some other aspect of the real car as the object of reference – the ‘signifier’ for a real car – such as a piece of material which feels similar to the car seat or to the seat belt, or maybe use a car key.  These objects can include special features such as textures, tastes and smells.

    You will have to teach the person that these objects have a meaning, for example, that they are going for a ride in the car.

Using Photographs

    Some people are able to look at photographs and understand what they mean. Instead of using objects of reference you could maybe use photographs of familiar objects around the house, such as toys, fruit, TV, family and friends. Photographs can be used in exactly the same way as objects of reference, that is, to let the individual know what is going to happen, to let them choose what they want to do, to let them tell you something. You might start with giving the person a choice of two photographs, and gradually increase the number of choices of photographs.

Using Pictures and Symbols

    Pictures and symbols can be useful as a way of making communication less specific. For instance, a photograph of a particular cup really only relates to that specific one. However, a more abstract symbol of a cup, for example, the PCS™ symbol could mean “I want a drink”, “Where’s my cup?”, “It’s snack time”, and so on. (See Focus on…Using Symbols for Communication for more information about using symbols.)

Signs, Objects, Photographs and Symbols in the Environment

    It is important that the person with multiple disabilities has access to their means of communication at all times. It can be useful to have their communication method visible, for instance:

    • a timetable of the day displayed three dimensionally using objects of reference
       
    • appropriate photographs or symbols on the wall in the canteen
       
    • appropriate pictures up round the sand pit or water tray
       
    • pictures/objects available or pinned to the wall above the bathroom sink
       

Useful Resources

  • Communication Without Speech: AAC Around the World
    This book is a highly accessible but very comprehensive introduction to AAC, with lots of practical tips and illustrations.
    Published by ISAAC. Available from Communication Matters.
     
  • Michelle Finds a Voice
    This book is a story about a young adult with disabilities who is unable to communicate effectively but is helped to overcome her communication difficulties. Her story is told through pictures alone (there is also text at the back of the book to provide one possible narrative).
    Published by The Royal College of Psychiatrists and St George's Hospital Medical School. Available from Communication Matters.
     

Further Information