What’s it like to be a teenager with speech & language difficulties?

What’s it like to be a teenager with speech & language difficulties?

Speech, language and communication difficulties can persist into teenage and adult years. Yet we know little about what it is like for young people to live with communication impairment.  Until recently, there has been little emphasis on what happens to children with speech language and communication needs (SLCN) after primary school. The Bercow report [1] found minimal evidence of services into secondary education. This is despite longitudinal research that has followed children with SLCN into their adolescent years and adulthood and identified difficulties with language and literacy, social exclusion and emotional and behavioural problems in comparison to their peers without such a history.

We know even less about the perceptions and views of the young people.

This project aimed to explore the views of these young people and to make a film that would share their perspectives with teachers, therapists, psychologists and other people working with teenagers.

Method

Our approach was participatory; that is we used approaches aimed at ensuring that the teenage participants had some degree of control over the process and its outcomes for both the research and the film. This was intended to enable young people to answer the research question from their own perspective and in their own way.

The project had two parts. First we held participatory research workshops with a group of teenagers to explore their perceptions and views. The design and facilitation was intended to enable the participants to shape the process and outcomes of the research. Next the teenagers and researchers worked with a film company, Brook Lapping, to produce a film. 

Recruitment

The project was open to teenagers in mainstream secondary school aged between 11 and 16 with primary speech and language impairment.  The participants were recruited at an activity day organised by Afasic[2] in Bristol. After an introduction to the research, six young people and their parents expressed an interest and six boys attended the first workshop.  After hearing more about the project and going through the consent process five boys decided to continue.  No girls came forward to be part of the project.

The boys and their parents consented to being involved with the understanding that they could opt out of any activity and the project at anytime and that their identities would be protected.  Additionally the participants collectively agreed a set of ground rules for conduct in the workshops.

The process

Five half day and three full day workshops were held.   A range of activities were used to encourage and assist the participants to tell their stories and express views as well as  to facilitate group cohesion and create an environment in which these teenagers might be happy to share their experiences.  The activities were developed, adapted and chosen in response to what happened in each workshop; drawing on participants' suggestions and enthusiasm but balancing that with an attempt to answer the research question by focusing some activities around communication.  Some of the methods used included video diaries, collage, photography, maps, journals, storyboards, improvisation, interviewing.

The workshops gradually led toward the film-making phase of the project as we worked with the boys to come up with ideas for the content and form of the film.  This led into a one day animation and puppetry master class and a 2 day workshop where the participants produced animations and filmed shadow puppet scenes. 

This was followed up by each boy being visited at home by filmmaker Tom Dalton. Material shot during the workshops by the boys, materials they produced in the workshops, their animations and footage shot in their homes was edited into a 25 minute film.  This was viewed by the boys with their parents. The participants suggested some minor amendments to the film which were carried out. The boys were very happy with the result and happy for the film to be shown to a wide range of people including other young people.

The Wrong Question

The question - “what's it like to be teenager with speech and language difficulties?” -  was the basis of the project.   It was the basis on which participants were recruited and workshop activities designed.  Early workshop activities helped us learn a few things about the boys likes, hobbies, home lives. Tasks were aimed at, for example, finding out about their daily lives or finding ways which enabled them to share information and feelings about their daily lives. We got glimpses of some common ground - breakfast cereals, computer games, videos and favourite films etc. - much as you would with any group of teenage boys.

There was an assumption that these kinds of activities could lead us into talking about or showing what it is like to be a teenager with communication difficulties. However, the participants did not talk about communication difficulties.  The boys did not appear to see the research topic or self reflection as something of particular interest. They never mentioned the research focus unless prompted, though when prompted they were able to say what research is and were aware of the question we were asking. 

There was evasion, puzzlement and evident discomfort when the researchers talked or asked about communication difficulties.  As one participant put it “talking about talking – that's weird”

At first we thought that we were getting the activities wrong. We tried different approaches thinking if we could just ask the question in another way, get the activity right, help them to express themselves   then they would be able answer.  Eventually we understood that the research was based on a faulty premise.

the whole concept of talking about their difficulties was going to be extremely difficult wasn't it? ...He can't say how difficult he finds something.  He used to call it his 'bad luck' when things went wrong for him.”

(mother of one of the boys)

It was only when we had finished the workshops and started to review the project data that we came to recognise or accept that we were asking the wrong question.

We were expecting or wanting some level of self analysis based on them seeming themselves as having difficulty in some way or having some understanding of how communication is not working for them and how people might help overcome that difficulty. But the teenage boys did not see themselves as having a difficulty in the way that we do.

 While we cannot be sure why participants did not engage with the research question – it may be for some or all of the following reasons:

  • they lacked sufficient ability for introspection or were not sufficiently self aware to reflect on or critique their own communication or difficulties in interacting with others.
  • they were not interested in talking about this kind of thing
  • they found it too difficult to talk about difficult issues
  • they did not see themselves as having difficulties – the difficulty lies in how others interact with them

The participants' evasion and puzzlement and our subsequent acceptance that we were asking the wrong question revealed some of the assumptions within the research.  These assumptions shaped the project; who we worked with and what we thought we could learn by researching and making a film with teenagers with communication difficulties.

We assumed that participants had communication difficulties and that this was acknowledged and accepted by all concerned in the project. This was the case for the researchers and the parents since the boys were recruited through Afasic.   But the young people had not necessarily opted to go to this group; they are in this group because they had been identified as having speech, language and communication needs by other people.  We assumed that they shared or accepted this view and saw themselves as encountering difficulties when in fact this was not necessarily the case.

We assumed that the boys would want to make a film about themselves and their communication whereas they were interested making a film about their interests or like the films that they enjoy watching but not about them.  They were not necessarily interested in what other people think or making a film to reach other people and found it difficult to understand why anyone else would want to watch a film about them. As Robbie said” why would anyone want to watch me – I’m not famous”. 

Each of the five boys had their own interests and reasons for being involved in different activities; whether as an opportunity to have access to video cameras and other media equipment; because they found it fun and enjoyed being with the others; or because they had made a deal with their parents that reaped other rewards; or a combination of those or other motives.

 The individuals and the group appeared to find it collectively or individually difficult or irrelevant or puzzling to talk about what we were doing and if it is difficult to articulate what we were doing and what they thought about it and how they wanted to take it forward, then it is difficult for that process to develop in ways which work towards the participants taking control of it. However the boys did shape the process and its outcomes.  They did so indirectly by shifting what took place in workshops to their interests and preferred practices rather than through articulating a critique or a sense of purpose to do with the research.

As we got to know the boys and explored different techniques of working with them, we moved to working in ways that fitted with their comfort zones.  Trying to find ways of working together and for the boys communicating comfortably and confidently for the purposes of both the research and their involvement in making a film led us to working in particular ways with implications for the workshop activities, research focus and film.

The process moved to being an exploration of what it's like to be Jon or Jacob or Robbie etc , to be one of this particular group of teenage boys. It moved to revealing the subjects they were comfortable to address, their preferred ways of communication and where they felt at ease.

Making sense of the process

The workshops were recorded and videoed and we watched the videos in order to develop an analysis of the project.  When we were reviewing this data we tried to focus on what the boys were explicitly telling us and to avoid placing our interpretations on their communication and what might be perceived as difficulties.  This included paying attention to:

  • what they volunteered directly about their lives
  • what they chose to tell us in response to activities and questions
  • what they told us in between activities
  • what we learned through mediated communications like improvisation and video

By attempting to privilege direct communication or at the very least articulate clearly where we were interpreting patterns of indirect communication, we identified some different tactics that the participants used to manage communication and the workshop situation.

Comfort zones

There were ways of acting and interacting that are more or less comfortable according to factors such as subject matter, practices or setting.  Some of these were to do with structures that were needed in the workshop, others were tactics that participants brought to the workshop and probably use in day to day life, some tactics emerged as a means of coping with the workshops.  We became aware of three main kinds of comfort zone.

Subject matter

Each boy had topics about which they could talk, ask questions and had information that they could provide to the listener.

One young man had a passion for sport especially cricket and rugby. While he would remain quiet and be visibly uncomfortable and struggle when trying to answer direct questions about school or family or what he did last week, he would talk at length and with authority about his favourite sports and when he made his animation he imitated a cricket commentary. 

Practices

The participants had strategies for feeling in control of the situation, such as time keeping or fiddling that helped them to cope or opt out of situations that are uncomfortable.

At first we could be irritated by one young man’s fiddling while we were involved in activities or discussions and sometimes he would be discouraged especially when he would take all the blutack that we needed to stick things to the walls. He explained to us that he could concentrate better when he had something to fiddle with.  So we started to bring extra blutack to the workshops so that Jon could fashion it into intergalactic destroyers and other models while participating in activities.

Context/setting/environment

The physical setting and the structure or routine and the ways in which adults acted and set or did not set parameters could be zones of comfort or discomfort for different participants. 

Keeping to time is very important for another young man. He would pay close attention to the clock and was frustrated or distressed if he didn't know what the schedule was or if we did not keep to it.  We experimented with different ways of sharing or agreeing the plan for the day. If we were too detailed in timekeeping this caused more frustration as we frequently over ran or moved things around.  So we would have a plan with key times such as lunch and break and a list of what we would do in between.

A growing awareness of comfort and discomfort shaped how workshops were facilitated and how activities were chosen, planned and introduced. We moved towards using comfort zones as a way of creating activities by giving the boys options in regard to the subject matter and/or form of activity.

By working to create a comfortable and workable space for the boys where they could interact and pursue things that they were interested in and in ways that they felt comfortable we moved away from the research questions and towards a space for exploring and representing their interests.. This created a space for (re)presenting themselves on their own terms.

Mediating communication

A particular kind of comfort zone had to do with how participants used different media and communications technologies or practices to mediate their interactions with us and each other.  These practices increasingly played a role in the workshops, and video in particular played a part in shaping the film. 

The boys used media technology not so much as a means of communicating information or feelings as experimenting with settings, play, socialising, and protection from being too vulnerable in the group .

Video was introduced into the workshops to serve as a research record but the boys were immediately attracted to the camera.  Initially concerned about our research recording we discouraged the boys from adjusting the camera or performing in front of it.  As we, at the boys’ request, introduced activities using video, it soon became part of ongoing informal activity with some of the boys picking up a camera whenever they wanted to film. This became another part of what we did in the workshop.

One young man was reluctant to be the focus of attention so to avoid this at times he opted to stay behind the camera.  He filmed what interested him rather than necessarily recording the workshop activities.  Sometimes he hid the camera or filmed out the window as part of his strong interest in CCTV and surveillance.  The video and other media technology was also used by Jon to interact with the adults. He would take on the role of assistant, checking batteries, helping out.

Performance and improvisation were also ways of mediating communication.  Throughout the workshops there were moments of spontaneous performance, Jake would perform dances in front of the camera or make dramatic gestures to demonstrate his discomfort at times by pretending to faint or throwing himself to the floor.  Towards the end of the first stage of the project this became a more integral part of the workshop with some boys opting to try out improvising sketches. This became part of every workshop, happening during breaks as well and was another ways for the boys to interact and socialise.

what's it like to be...

The research moved from asking what's it like to be a teenager with communication difficulties to exploring what it's like to be each individual young person.  As a result the research and the film built up a picture of 5 teenage boys, their likes and dislikes, ways of being in the world, passions etc... By resisting our research question the participants brought us to look past our framing of their experience in terms of difficulty to work with them in representing themselves on their own terms and learning about their tactics for coping with the world.  In so doing they challenged our assumptions about their communication.

 

The film is available from Bristol Speech & Language Therapy Research Unit. Please click here to order.

 



[1] The Bercow Report. A Review of services for children and young people (0-19) with speech, language and communication needs.  DCSF Publications. Crown Copyright.

[2]  Afasic is a national parent organisation for children with speech language and communication difficulties

 

 

 

Funders: 
The Underwood Trust
Project Duration: 
July, 2008 to July, 2010