What do adults who stammer think about therapy?

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Rachael

Speech & language therapist (SLT) Rachael Wakefield tells us how she navigates the debate currently raging around the therapist's role for people who stammer. It shouldn't be a one-size-fits-all approach, she argues, and invites you to share your experiences of therapy.

Differing models

In the UK, there is currently a passionate debate among members of the stammering community and professionals working with those who stammer, including SLTs, as to what place therapy for stammering has within our society (Simpson, 2019). 

This debate is steered by the 'neurodiversity model' which may be understood as an empowering and alternative way to view disability. Neurodiversity is the idea that people experience and interact with the world around them in different ways, so there is no 'right' way of thinking, learning and behaving. The model sees therapy as focusing on living well with these differences, not on suppressing them to fit 'neurotypical' standards (Constantino, 2018). 

The neurodiversity model may be applied to stammering, which is a neurological difference, in that speech output is accepted, normalised and valued by society. Therefore, some members of the stammering community argue that techniques to suppress stammering and speak more fluently have no place in this hoped for society and may even be viewed as a harmful intrusion against people who stammer (Richter, 2019).

In addition to the neurodiversity model, it can be helpful to understand other models as we think about therapy for stammering. The 'medical model' is centred around pathology and cure, i.e., what is the 'problem' and how can it be fixed? Stammering therapy within the medical model, therefore, focuses on supressing the stammer and aiming for fluency. 

In contrast, the 'social model' views the attitudes of society and the environment around the person who stammers as being the problem, eg workplace discrimination, negative stereotyping or the automated phone system which will not wait for a stammered voice (Campbell, 2019). Stammering therapy within the social model may include education and awareness raising, campaigning and practising self-advocacy.

My approach

As a recently qualified children's SLT, with young children who stammer on my caseload, I am continually reflecting on my role in their journeys with stammering. I always aim to work within the social and neurodiversity models and send out gentle, empowering and positive messages about stammering to children, families and schools. 

However, due to the many layers of complex thoughts and feelings around stammering vs. fluency which can build up over the years, there may be older children, teenagers and adults who are not in a place to accept or embrace their stammer. This is entirely valid when we consider the unfriendly or unaware environments and reactions they often face. 

To help me in my practice, I often reflect on a conversation with a stammering specialist on my student placement who shared an opinion that to fully commit to one model (medical, social or neurodiversity) could be to the detriment of clients requiring individualised therapy plans and a therapist who listens to their needs at that time. In line with this expert opinion, recent stammering literature concludes that tailor-made therapy plans are highly valued by those who stammer and the impact of a stammer, and the individual's feelings towards their stammer, can change across the lifespan (Johnson et al, 2016). 

...to fully commit to one model could be to the detriment of clients requiring individualised therapy plans.

In addition, a web-based survey questioned a small sample of adults who stammer on their preference for fluency or freedom to stammer. Interestingly, there was ambivalence amongst 57% of this sample, suggesting that some people may prefer to pick and choose when to use fluency techniques and when to stammer more freely in their daily lives (Venkatagiri, 2009).

This finding adds some depth to the idea that stammering is complex and varied in nature and a one-size-fits-all approach will likely be ineffective for the needs of individuals. Furthermore, Tichenor & Yaruss (2018) identified via a demographic questionnaire that therapies including acceptance of stammering were valued more so than therapies with a sole focus on fluency. 

...it is important for SLTs to have the confidence to guide their client and raise awareness of the many options available to them in learning how to live well with a stammer, regardless of the choice to aim to speak more fluently or more freely. 

With the many possible directions a person who stammers may choose to take on their stammering journey, it is important for SLTs working in this area to have the confidence to guide their client and raise awareness of the many options available to them in learning how to live well with a stammer, regardless of the choice to aim to speak more fluently or more freely. Having an SLT who is knowledgeable and responsive to the needs of the individual is likely to contribute to a strong therapeutic alliance, a concept highly valued by adults who stammer when engaging in therapy (Sonsterud et al, 2019;2020).

My dissertation, completed during my studies at Leeds Beckett University, aims to provide an updated review of the literature between 2015-2021, reporting on the experiences and perceptions of adults who stammer towards the variety of therapies for stammering. By understanding these perceptions, SLTs may be better informed to provide evidence-based and individualised guidance to clients seeking out support at different stages of their stammering journey. You can read my dissertation by downloading it below.

If you have had therapies for your stammer, I would be so interested to hear your thoughts. I didn't come across many UK-based studies during my literature review, so I'm keen to learn more. Please email me at rachael.wakefield@lingospeech.co.uk if you would like to share them with me.

How are parents & schools reacting?

We asked Rachel to tell us more about how parents and schools react to these shifting attitudes to stammering therapy. Here's what she said… 

I have only been in practice as a children's SLT for one school year so my experiences with children who stammer are few and I am still learning. However, so far I have found that parents just want to know how to help their child and are open to thinking about stammering in a new way. 

If I did come across a parent who was adamant about 'fixing' their child's stammer, I would consider ways that I could gently start to support some new ways of thinking about stammering, eg sharing some reading or videos such as Sam's fantastic 'I have a stammer' poem and opening up a discussion about how they shouldn't feel ashamed. 

So far I have found that parents just want to know how to help their child and are open to thinking about stammering in a new way. 

Sometimes we may come across older children or young people themselves who want that quick fix and aren't ready to think about different ways to see their stammer. They may have very high standards for themselves, viewing fluency as being 'the best' way to communicate. In this case, we as therapists have a responsibility to share what we know about the evidence base, i.e., we know that fluency focused-only therapy is not very effective or sustainable and provide some information and resources on 'stammering pride', whilst giving these children and young people the time and space to come to their own conclusions and decisions. (See our article 'What is Stammering Pride' to find out more about it.)

I feel there is still a way for schools in general to go (based on the small selection of schools I work in), in terms of understanding stammering as a different way to communicate and not something to be 'overcome'. For example, changing language used around stammering, such as "His stammer is getting worse" or "Her speech was better today".

I feel there is still plenty of awareness raising and education about stammering to be done, which will take time and effort to support change. But I personally feel this will be key in bringing about change for children and adults who stammer in the long term. Examples of this may include positive stammering displays, class presentations on stammering, in-school training for school staff (as attending out of school training is often very hard for them), sharing information on school social media, sharing some common misconceptions and ways to help in easy, bite sized information, etc.

Would you like to write an article? Tell us your take on the neurodiversity/medical/social model debate. See Submit Something For The Site or email editor@stamma.org for more details.

References

Campbell, P. (2019) People with stigma: A reflection on stigma against stammering in society and the stammerer. In: Campbell, P. Constantino, C. Simpson, S. eds. Stammering Pride and Prejudice: Difference not Defect. Surrey: J&R Press Ltd, pp. 39-48. 

Constantino, C. (2018) What can stutterers learn from the neurodiversity movement? Seminars in Speech and Language, 39 (4) September, pp.382-395.

Johnson, M. Baxter, S. Blank, L. Cantrell, A. Brumfitt, S. Enderby, P. Goyder, E. (2016) The state of the art in non-pharmacological interventions for developmental stuttering. Part 2: qualitative evidence synthesis of views and experiences International Journal of Language and Communication Disorders, 51 (1) January, pp.3-17.

Richter, Z. (2019) On stuttering activism and resistance. In: Campbell, P. Constantino, C. Simpson, S. eds. Stammering Pride and Prejudice: Difference not Defect. Surrey: J&R Press Ltd, pp. 71-75.

Simpson, S. (2019) Looking back, looking forward. In: Campbell, P. Constantino, C. Simpson, S. eds. Stammering Pride and Prejudice: Difference not Defect. Surrey: J&R Press Ltd, pp.145-157.

Sonsterud, H. Kirmess, M. Howells, K. Ward, D. Feragen, KB. Halvorsen, MS. (2019) The working alliance in stuttering treatment: a neglected variable? International Journal of Language and Communication Disorders, 54 (4) July, pp.606-619. 

Sonsterud, H. Feragen, KB. Kirmess, M. Halvorsen, MS. Ward, D. (2020) What do people search for in stuttering therapy: personal goal setting as a gold standard? Journal of Communication Disorders, (85) May-June, pp.105994.

Tichenor, S. Yaruss, J. (2018) A phenomenological analysis of the experience of stuttering. American Journal of Speech-Language Pathology, 27 (2) pp. 1180-1194.

Venkatagiri, HS. (2009) What do people who stutter want—fluency or freedom? Journal of Speech, Language and Hearing Research, 52 (2) April, pp. 500-515.