Welcome to the Michael Palin Centre’s contribution to the International Stuttering Awareness Day online conference. We have focused on the work that we do with our older teenage clients, or young adults as we usually call them, and in particular the ideas that a recent group felt were important to be shared world wide for ISAD.

The Michael Palin Centre for Stammering Children was officially opened in 1993 as a partnership between a charity and a National Health Service Trust in London. The actor, writer, and ex-Python of Monty Python fame Michael Palin agreed to the centre being named after him following his role in "A Fish called Wanda" in which he portrayed a character called Ken who stuttered. While Michael Palin does not have a stutter himself, he does have real personal experience of the problem because his father had quite a severe stutter and Michael remembers vividly the effect that it had on family life. Because of this he is one of the Centre’s most enthusiastic supporters — and as a media personality, he has undoubtedly been influential is raising the profile of stuttering as a problem and the Centre as a place where help can be found in the U.K.

When the Centre opened in 1993, there was one part time Speech and Language Therapist, and now we have ten! We have been amazed by the rapid growth of a Centre which set out to deal with a communication disorder which many people feel is quite rare. Not in our experience - our waiting lists continue to grow.

We see about 200 — 250 new families per year from all over the UK. The age range is from 2 — 18 years, with some adults being seen as well. Therapy is free in the UK, so the only problem about being seen is the length of our waiting list — but that is a common problem for all Speech and Language Therapists in the UK.

Our summer group (July 2000) wanted to share their experience of the programme at the Centre. We had a group of 7, aged between 15 and 18, who worked every day with two therapists for two weeks. The group, Claudia, Sophie, David, James, John, Lee, and Mark, felt that we should include ideas around the challenges and pressures of being a teenager, causes of stammering, what keeps it going for some people and some ideas and strategies that are helping them to make some useful changes in the ways that they are managing the problem.

As you read on we’ll cover:

The "double trouble": being a teenager who stutters

The causes of stammering & what maintains the problem: the vicious circle of stammering

Key elements of our group programme:

breaking the vicious circle
fluency control strategies
communication skills
A checklist of what helps: things to try doing a bit more of.

The Double Trouble - being a "teenager" who "stutters" .

The Teenage Bit:

The transition between childhood and adulthood is acknowledged as one of the toughest times of life. . . . . . .

• You feel strong and independent one day, yet on another day you have real self-doubts.
• You grow at an incredible rate, both physically and mentally. Your height, weight, and appearance all change and both what you think about and how you think changes. It is a time of considerable mental and physical challenge for you (and for your family).
• Friends become more important
• Your family doesn’t seem to understand or appreciate your growing need for independence.
• It’s important to "belong", to be able to identify and connect with your peer group.
• There’s pressure to wear the right clothes, with the right labels, and to have the right "look". Everywhere you look - TV, magazines, shops - you are confronted by advertisements which show you what you should be doing/wearing/saying/ buying. (This is of course a real problem for parents and can become an area of tension at home!!).
• And what about the increasing educational pressures? In the UK, the system makes you start considering future career options as early as 13 years of age!
• With all of these changes and challenges you often feel lacking in self-confidence — and have to cope with that as well as everything else!

By 16 years of age, a person who stutters will have had a great deal of experience of

stuttering. For many these experiences have often been quite negative:

• The ever-present threat of being teased or bullied or not accepted.
• Constant efforts to hide, avoid, or minimise the stuttering, and the frustration when that doesn’t work.
• The failed promises that you would "grow out of it" — and the dream that one-day it could still come true after all.
• You have tried your best with "therapy", it just hasn’t worked out yet — for lots of perfectly good reasons.
• All that "helpful" advice! Sounds great, sounds easy but - it doesn’t work or it’s impossible to do or it feels stupid — and anyway other people really don’t understand.

The causes and what maintains it — the vicious circle

The various theories about the causes of stuttering will probably be dealt with by other writers but in fact by the time you get to be a young adult we think that the causes are less important than the things that keep it going for a person.

It is such a variable problem that it seems to us that if we can understand more about the circumstances that seem to influence when the problem is worse — and maybe even more importantly — when it is better, then this could tell us a little bit about what an individual can do to influence the stuttering and then they will feel less powerless. One way of understanding how situations influence your fluency is to consider how thoughts and feelings about speech and speaking situations affect fluency. This is the vicious circle of stammering.

This is not a new idea, but one that is well described by Cognitive Therapy to help us understand the role of thoughts and beliefs in making situations better or worse for ourselves. It is quite a simple idea but it deals with a very complicated subject: the psychology of emotions!

Consider this scenario……

The phone rings:

First thought: "Oh no, I know I will stutter, I always do on the phone — but I must answer it — it’ll be a disaster".

Response: Panic: Your heart rate increases, your palms start sweat and you feel more physically tense.

Result: You don’t answer. ("I’ll pretend I was out. It’s stopped ringing — thank God")

Then — "I knew I wouldn’t be able to do it. It’s no good, what an idiot, I can’t do anything right!"

Sound familiar?

There is a useful diagram that illustrates how the vicious circle seems to work:

We think most people are familiar with the idea of predicting problems based on past experience. In certain situations the vicious circle is triggered and negative thoughts flash through our minds which can be completely convincing (eg: "I’ll stutter," "There’s nothing I can do," "I won’t be able to speak"). These thoughts may happen so routinely that you hardly even notice them, you just notice that you feel worse. Underlying these powerful and frightening thoughts are the strongest of beliefs about the consequences of stuttering (e.g. "They’ll laugh at me", "They’ll think I am stupid", "They won’t listen or try to understand".)

These thoughts are made worse by the natural reactions that go with them. It’s normal to have an emotional response to the situation — you might feel nervous, ashamed, embarrassed or simply fed up! Physical reactions such as getting hot or sweaty, feeling your heart pound and feeling "butterflies" in your stomach are also natural - they are responses to feeling nervous. The problem is they tend to make things worse by making you even more self-conscious.

Finally, this has a knock-on effect on how you behave. You may avoid a situation entirely, change words, not speak or say as little as possible. Or when you do speak you may be more likely to stutter because of the increased tension. Whichever of these happens it reinforces your thoughts and beliefs ("I knew I couldn’t do it"). The vicious circle is then completed, and next time the phone rings, or you queue up to buy a train ticket, or you prepare to give a presentation in class, the vicious circle is triggered again.

(Alternatively sometimes you don’t stutter and, being human, you put that down to luck and assume the worst next time.)

Our group discussed whether this "fitted" with their personal experience and discussed the strategies that they had all developed to try to stop stammering. Some had developed enormous vocabularies — to give them the chance to avoid, some just opted out of situations — pretending they weren’t interested or didn’t know the answers. Others tried rehearsing the words beforehand. Sometimes these ideas worked, but often they didn’t. Everyone agreed that it was exhausting both mentally and physically.

We aim to consider "communication" as a whole — just concentrating on speech techniques seems to be a bit lop sided — there is so much more to stuttering than just what comes out of a person’s mouth — it is patronising to consider it to be so simple. Verbal communication only makes up 30% of how we communicate. Looking, listening, taking turns, acknowledging, showing interest, encouraging — all can be non-verbal and are really important in communication.

So our programme aims to include enhancing fluency, social communication skills and the more psychological aspects of stuttering, particularly understanding the vicious circle and experimenting with ways of breaking it. The latter, arguably the most important, concerns the development of a broader understanding of the role that a person’s thought processes (e.g. attitudes) about their stuttering has in influencing their feeling and the symptoms of stuttering in different situations.

If the idea of the "vicious circle" fits then clients are helped to consider alternative ways of thinking which might be more helpful. This is done by first noticing negative thoughts or predictions and then challenging them through questions.

Eg:

• Is that thought helpful or does it make me feel worse?"

• Are my predictions always true or are there times when they aren’t 100% correct?
• Is there any evidence that suggests my first thought might not be 100% true?
• Am I focusing on the worst possible scenario rather than the most likely one?"
• Is it possible for me to know for sure what people are thinking — especially if I have managed to not look at them?"
• Is there another way of looking at things?"
• Am I expecting myself to be perfect and is this reasonable or does it just increase the pressure?
• Am I jumping to conclusions?

The emphasis is on each person getting to know the way they tend to think when they go into difficult situations, becoming better at checking out for sure what happens rather than assuming the worst, better at noticing the "good news," and better at not seeing themselves as the ones totally responsible for how a conversation goes.

Young adults who stutter may already have a good idea of what strategies are helpful to get better control of fluency, or they may be just starting to really think the whole thing through. We work through a structured programme of practicing core strategies such as rate reduction, use of an easy attack at the start of words, and improving the flow between words. We encourage our clients from the start to be in charge of deciding which strategies are the most helpful for them, what degree of control they’re aiming for, and how they rate their performance on each task. Personal aims for fluency control are balanced against what feels "good enough", so that any self-imposed pressures to be "perfect" are challenged

An underlying message is always the importance of "having a go" and being a fair critic to oneself. We have found that most of our clients are extremely good at being self-critical and rather less good at giving themselves reinforcement. This means that we encourage our clients to focus on how they did in terms of overall social competence rather than solely how their fluency was. For example, supposing you have a go at controlling your stutter but still do stutter more than you ideally would like… BUT you got your point across and maybe needed to be quite assertive to do so, or you held people’s attention, or gave a knowledgeable presentation, or just said what you wanted to rather than avoid, then that deserves real recognition and reinforcement and is maybe more important than how your fluency was.

Everyone in the group is helped to identify their communication skills strengths and also targets for improvement. The group as a whole works through a series of exercises and brainstorms which helps them to refine their skills at observation, listening, turn-taking and reinforcing both themselves and others, as well as developing the more complex skills of being effectively assertive, able to problem-solve and negotiate.

Our group compiled this checklist of reminders for themselves.

Notice negative thoughts and experiment with saying something more helpful, especially anything that takes the pressure off (eg: instead of "I’ve got to be fluent" or "I can’t", maybe "I’ll have a go" is more helpful).

Try to see negative thoughts as predictions rather than as facts in themselves. Try and check out what usually happens. (E.g. If the negative thought is "people will laugh," try to notice next time I stammer how many people actually do laugh.)

Think about what I can say to myself that’s helpful if the worst happens (eg: supposing someone does laugh or snigger, then try challenging with: "Is that my problem? What does it say about them as a person? How many people didn’t laugh?")

Be a fair critic. Notice when I’m being self-critical, only noticing the negative, or writing things off ("That was a disaster", "I’m useless"). Notice what went well first of all and give myself some praise! ("I had a go — that took guts!" "I got more involved in the conversation than I usually do — terrific!)

Check on how fast I’m speaking — "If I go just a bit more slowly does it help?"

Experiment with changing the muscle tension when I’m talking. Check those hard blocks, can I ease into them a bit more? Try practising changing the levels of tension in the jaw, tongue, throat muscles in private first, then in easy situations.

Remind myself about what works. Am I using strategies which do help to minimise my stuttering? What are they? How do they help?

Finally:- how is success measured in therapy?

This is perhaps one of the hardest questions of all for us to answer. Cure is a rather unhelpful word — it is a medical word associated with illness — and stuttering is not an illness. And some people may always have a degree of stuttering in their speech. It is how the person deals with this and reacts to it that can be part of the problem and part of the solution.

Therefore all we can say with any degree of confidence is that it is not necessarily helpful to rate successful therapy by how many times a child or adult stutters, but it is also important to consider the level of self confidence that the person has in his or her ability to communicate.

Most people who have experienced a stutter will say that they can be fluent under certain circumstances and some therapy strategies can produce "fluent", but highly controlled speech (e.g. not spontaneous), it would be wrong to say that a "cure" had been "proven" under these circumstances.

At the Michael Palin Centre, we are concerned not to make unrealistic promises. We feel that there are a number of ways of measuring a "successful" outcome, but one measure is not enough. The most important measure must be how the person themselves feels about communicating.

We include in our measures:

• Level of concern (from individuals and parents)
• The type of stutter — rather than the quantity
• The level of confidence expressed by the person who stutters
• The effect the stuttering has on their daily lives.

The centre has an active research programme which is primarily focused on younger children. We also have research links with University College London, City University - London, The Institute of Child Health, London, University of Strathclyde — Glasgow, Texas State University, and the University of Vermont.

We have a web site under construction so look out for The Michael Palin Centre in the future when searching "stuttering."

You can post Questions/comments about the above paper to Frances Cook and Jane Fry before October 22, 2000.