Jenny Morris explains how listening and asking the right questions can help young people with communication problems engage with others.
All those working with children and young people are urged to listen to and consult with them. But how do you do that when the child or young person has a communication impairment? How do you listen when you’re not sure how much they understand and you have difficulty understanding them?
In carrying out research about young disabled people who have high levels of support needs,1 I came to realise how much we have to learn from children and young people themselves about how to meet their communication needs. I was also struck how many times young people identified the problem as being located in the adults around them and not in their communication impairment per se. As one girl said: "I don’t have a speaking problem. Other people have a listening problem." And yes, I did have a listening problem when I interviewed her - I couldn’t understand her speech and panicked which made it worse. I pretended I understood her because I was too embarrassed to keep asking her to repeat herself. I talked too much myself and didn’t allow enough time for her to respond to my questions.
In doing the research, I was also struck by how many young people had reached the end of their schooling without their communication potential being fully realised. Some young people were surrounded by those who understood how they communicated. They experienced high levels of interaction with others and were fully involved in both everyday decisions and bigger choices. Others had very few people in their lives who acknowledged their ability to communicate and interact with others. When children and young people are treated as if they cannot communicate, some react with anger and frustration while others switch off. One mother, for example, told me how her daughter had spent most of her time at school asleep. It was only when she changed schools, and teachers and other children starting interacting with her that she "woke up" and responded.
When an adolescent had good experiences of having their communication needs met, it was often because one or two people had recognised their potential when they were younger. One boy told how his first memory of someone recognising his ability to communicate was in primary school: "It was a teacher. It was exciting. She took time." Often it was parents, or other family members, who first recognised potential: "My first memories of being understood and being able to make myself be understood were when I was about four. My mother worked out I could say yes and no." For this girl, "yes" is looking to her right and "no" is opening her mouth.
Another girl remembers a physiotherapist "who learned to understand me very well. She was good at making eye contact with me and I think she understood how I was feeling at the time. She knew when I was in pain and would talk with me about it. I was very fond of her and she always took the time to understand what I was saying."
Young people had such a lot to say about how people could better facilitate their communication that we decided to use their experiences to write a guide for social workers, personal advisers and others working with disabled children and young people with communication impairments. Many of these professionals have a responsibility to consult with children and young people and to ensure that their needs - including their communication needs - are assessed and responded to. Yet few of them have specialist expertise around communication impairment.
The guide is aimed at these non-specialists. It provides a list of resources and organisations which specialise in different aspects of communication. It also contains advice - based on the views of young people themselves and of experienced social workers and speech and language therapists - about how to go about working with someone who has a communication impairment, and how to judge whether their communication potential is being realised.
Young people who were consulted during the course of writing the guide identified that negative attitudes and poor communication skills of non-disabled people caused them the most problems. They also shared experiences of inappropriate and outdated equipment; of communication books which didn’t contain the words or symbols that were important to them; of not being able to have their preferred communication aid with them at all times.
However, young people also had some really positive advice about how to consult with them and maximise their communication potential. One important starting point is to never believe it if someone says to you, "He can’t communicate," or "It’s impossible to find out his views or feelings." Everyone expresses preferences and if you can recognise how they indicate whether they like or dislike something you are receiving a message from them. That is communication and it can lead to the child or young person having choice and control in their lives if these messages are acted upon.
When it comes to judging whether a child or young person’s communication needs are being met, the young people had lots to say.
They thought it important to find out:
Many of the young people we consulted relied on a communication book or piece of equipment. They thought that those working with them should find out:
These checklists provide examples of the positive advice that children and young people with communication impairments have to give. If we are not to deny them their human right to communicate we need to pay close attention to such advice.
Jenny Morris is an independent researcher.
1 J Morris, A Lot to Say: A guide for social workers, personal advisors and others working with disabled children and young people with communication impairments, Scope, 2002, Available free from Scope, 6 Market Road, London N7 9PW. Tel 020 7619 7341. E-mail: information@scope.org.uk
