At the most recent Oxford Dysfluency Conference, the organisers asked me to give the traditional After-Dinner Speech. One of the Conference highlights has always been the Gala Dinner in the Hall of St Catherine's College.
While the speech had to be mildly entertaining and witty, I had been pondering about what I should say about "what do people who stammer, what does BSA look for from research into stammering". It all sounded potentially a bit on the controversial side in front of an audience of clinicians and researchers - but then I've never been one to shy away from controversy! So here's the excerpt (minus all the bad jokes) about what I felt BSA is looking for in terms of research into stammering.
What does BSA want from research?
Here’s my wishlist for you – and my challenge to you as researchers and clinicians.
BSA exists to support and advise, to educate, and to influence. BSA is not a shelter for stammerers, we are a place where people who are dedicated and capable, those who stammer and those who are interested in stammering, come together to make the UK a better place for children and adults who stammer.
Our biggest challenge right now is observing the slow death of NHS stammering therapy. We want to have every adult and every child who stammers to have timely access to specialist therapy or at the very least access to a therapist who is supported by a specialist, funded by the NHS and free at the point of delivery.
We are looking forward to the publication of the NIHR-funded systematic review on effectiveness of stammering therapy later this summer. But what can I say to the NHS manager who tells me they no longer fund therapy for children over the age of seven who stammer because there is no evidence that therapy is "successful in terms of regaining normally fluent speech"? How do I communicate the message that stammering therapy is effective to commissioners when we still know so little of ‘effective in terms of what’ and 'at which point' and 'for whom’?
Research into new forms of delivering interventions – Telehealth, Grant Meredith’s or ASRC’s work on internet-based interventions, or the work done at the University of East Anglia on redirecting attentional bias through simple computer-based tasks point to a possible future where stammering therapy as a profession may well look rather different.
Picture if you will – a mother calling our helpline. Her son is almost three, has started to stammer suddenly, and his speech has deteriorated markedly over the last three weeks. She’s distraught. But first and foremost she has questions:
- Why has he started to stammer now? Is it something I’ve done?
- Is he going to get better?
- What will the SLT base their differential diagnosis on?
- How will they decide what type of therapy is best for him?
- Will getting therapy mean he’ll recover?
So many questions, still so few definitive answers – 75 years after work started in what I call The Mothership in Iowa.
I don’t believe the world really needs more outcome studies looking at three people undergoing a specific intervention and finding that it worked ok for two but not for one.
I don’t believe the world really needs more outcome studies looking at three people undergoing a specific intervention and finding that it worked ok for two but not for one. We kind of know, and it’s been settled a long time ago, that almost any type of intervention will work for some people who stammer some of the time.
What we do need to know would be
- Are there interventions that work better, are more effective in terms of desired outcomes than others? And if there are therapies that are equally effective, at a time of tight budgets and austerity we need to know whether there are therapies that are more cost-effective to deliver than others.
- We need to know which interventions are effective for which clients. Having to advise people who have finally made that step to seek help, to actually use the telephone to call a helpline that they need to ‘shop around until they find what works for them’ is not a very helpful way of offering support.
- We need to know what the natural recovery rate is for those children under five who show up as clients in your clinics. The suspicion is that the recovery rate for these children will be lower than the generally accepted 80% rate for Every Child Who Has Ever Started to Stammer. But without knowing what the natural recovery rate for these children is (and I was pleased to see Elaina Kefalianos’ presentation this year) – how can we ever say any intervention is more effective than normal recovery?
- We need more Randomised Controlled Trials (RCTs) – there seems to be a general acceptance that RCTs would be unethical because it might mean denying treatment to children under the age of five. But if as a clinician you operate a waiting list of, say, six months you are already denying treatment to young children. Six months for a 2½ year old is a lifetime. Speak to Geoff Lindsay at Warwick University who shredded this argument when I foolishly repeated it in front of him.
- We need to know whether, if interventions are ineffective for a client, there is something specific to this client that makes it ineffective when we have evidence that it works for others? Are there after all sub-groups of people who stammer?
- We need to know if interventions are effective, what aspect of the therapy causes the effect and which ones are unnecessary?
- And finally, something that is close to BSA’s heart, we need to identify really effective therapies for people who stammer with additional problems: we are getting increasing enquiries from parents of children with Autistic Spectrum Disorders, with learning difficulties, and with Down’s Syndrome. I am really pleased to see presentations on therapy for clients with ASD – and even more pleased that Monica Bray is finally writing The Book on stammering and Down's Syndrome!
Educating about stammering
BSA’s job is to educate about stammering – our Vision is A World that Understands Stammering.
We are accountable for what we tell the world about stammering, and we need to say what we believe or know is true about stammering.
Sometimes that means losing a good case. Some of you will know that children with speech, language and communication needs (SLCN) are the biggest group of identified special educational needs (SEN) in England’s primary schools. After transition to secondary school, the number of children identified with SLCN drops away, while the number of children identified with Behavioural, Emotional or Social Difficulties (BESD) increases sharply. It seemed logical to state our case that this highlights a failure of identification. We know children who stammer learn quickly to hide their stammer. We felt we could reasonably say our children are being misdiagnosed, and a false diagnosis means they are not getting the support they need. Unfortunately, Julie Dockrell’s research as part of the Better Communication Research Programme has put paid to this and we can’t argue this any longer. It was good while it lasted!
Educating about stammering also means educating people who stammer. Those of you working in clinics will know about the very personal stammering narrative with which clients often arrive at your door. For BSA, that sometimes means while we need to acknowledge their personal story, we also must point out what we know about why people stammer and that perhaps it might be helpful to let go of the notion that they started to stammer because of a psychosocial maladjustment.
A world that understand stammering also means a world that understands that stammering is not a trivial condition, and that discrimination and prejudice are still wide-spread and blatant.
I love to quote research, for example from what I call the Koala Rucksack study (Marylin Langevin’s PhD) which shows that even a nursery child who stammers gets constant negative feedback on their communication. I’m sure I probably told more people about it than have read it in the Journal. Everyone ‘gets’ this – no matter how little they previously knew about stammering, they instinctly understand the impact this will have on the stammering child. Likewise, Clare Butler’s recent qualitative research on “Stammering and Aesthetic Labour”, funded by the wonderful Dom Barker Trust, clearly highlights the problems people who stammer experience in finding fulfilling employment, and the daily discrimination they face.
It also, shockingly, highlights the internalised oppression of people who stammer who ‘own’ these negative statements, who believe all those misconceptions about stammering themselves and whose most commonly used term, when asked about the process of finding work, was ‘gratitude’. They were thankful for having been given a chance, and didn’t realise that they were bringing valued and valuable skills. This is research that determines the direction and the work of the BSA, and the message we share with the world. It tells us that in terms of campaigning, of making the world a better place for people who stammer, we are now where dyslexia, or sexual equality were twenty or more years ago, and it helps us to learn from their journey.
And finally – over the last decade there have been wonderful new developments in neurology and genetic research.
Two ODCs ago, in 2008, I attended a presentation by Anne Smith from Purdue University. It was in the Q&A session that Anne responded to a questioner “You know, we really ought to stop saying ‘We don’t know what causes stammering’”.
Talk about inspiration! A few weeks later, a generally agreed statement appeared on the BSA website. It’s been up there ever since and I have pointed out to many people, even many researchers, on many occasions that We No Longer Say We Don’t Know Why People Stammer.
We don’t yet know everything there’s to know. I still have to say to Mums that I don’t know why her son started to stammer at this particular point in his development, and we may never know. But we do know it’s not because he’s shy or gregarious, less or more intelligent, or anxious about speaking. We know what’s the chicken, what the egg.
Implications for therapy
So, on the one hand we have this new dawn of amazing scientific discovery. However, orthodox therapy moves on seemingly unaffected – like ships in the night. I was really pleased that Professor Chang ended her presentation on observed functional and anatomical differences in the brain of young children who stammer with asking “what are the consequences for therapy?” I wonder how many of us had asked ourselves that question, and my (possibly unfair) guess would be, not all that many.
BSA would like to see work on developing interventions that actually take into account these findings. All we have at the moment is a growing suspicion that we may have touched on why some existing approaches actually work. I know Mark Onslow always said that there is no underlying Theory of Stammering behind Lidcombe – they use it because it works. Well, the neurological research may now give us a glimpse into why it might work (“neurons that fire together, wire together” etc) but it feels rather like putting the cart before the horse.
So there you have it, my wishlist, and my challenge to you all. I’ve probably overlooked some splendid work that’s already out there. If I have, please let me know. We will make use of, share and spread your findings.
Oxford, July 2014