The Nature of Dysfluency in Down's Syndrome

Monica Bray Speech and Language Therapy Group School of Applied Social Sciences Leeds Metropolitan University, Leeds

Reproduced with permission from the Bulletin (March 2003), Royal College of Speech and Language Therapists © Copyright Royal College of Speech and Language Therapists, 2003

We know that the percentage of people with Down's syndrome who show characteristics of dysfluency is high. Studies such as those by Preus (1973) and Devenny and Silverman (1990) suggest that between 42% and 59% of their subjects with Down's syndrome were dysfluent. The nature of the dysfluencies is unclear and there is argument as to whether they are stuttering or cluttering or other dysfluency types (Preus, 1973). Preus reported (1990) that the dysfluencies are often accompanied by other language and speech difficulties.

Little has been written about the treatment offered. Preus's study (1990) gave case history treatment information for three clients with Down's syndrome but the pattern was of general language and articulation work, not direct fluency intervention. Other studies discuss treatment of clients with learning difficulties among whom there are some with Down's syndrome (Thurman et al, 1986).

It is worrying that so little is known about the symptoms of dysfluency with which clients with Down's syndrome present and about ways of working with these clients, given that many of these children and adults present with 'stammering' alongside other speech and language disorders. As a so-called 'expert' in the area I receive numerous phone calls asking what can be done about the stammering from parents, clinicians and organisations such as the British Stammering Association — but my knowledge base is limited by our lack of data.

The survey

This preliminary survey set out to explore some of these factors. Twenty-seven speech and language therapists from around the country responded to a questionnaire, and provided information and discussion about the identification of dysfluencies and the nature and success of treatment they had offered to clients of all ages with Down's syndrome.

We recruited therapists through a letter in the Bulletin, through the national SIG in disorders of fluency and through personal contact and word of mouth. They represented a number of different work contexts and specialties (some worked with more than one group):

• work with pre-school children - 6
• work with school aged children - 14
• work in adult learning disabilities - 8
• work primarily with stuttering - 10
• other (AAC) - 1

Clients with Down's syndrome formed a small proportion of the case load: seven respondents saw fewer than 1%; most (14) had only up to 9% on their case load. Most of the therapists dealt with children and young adults up to 21 years of age.

We asked respondents to identify from a list which dysfluencies they saw most often in their clients. Table one shows their responses.

It is noticeable that among the most identified dysfluencies are repetitions, blocks and struggle behaviours — all of which would be clearly identified with stuttering. In fact re-working of the information into the categories of stutter-like dysfluencies versus others based on Yairi' s work (1997) shows that nearly 90% of the identified features fell into the stutter-like category (part-word or monosyllabic word repetitions, dysrhythmic phonation and tense pause).

The respondents worked in several ways; most had a generalised and eclectic approach. The treatments offered were:

When they were asked to identify the nature of the direct and indirect work undertaken in more detail, the therapists gave the following information:

50% of the therapists had tried some form of fluency work ranging from directing clients to slow down, through use of the Lidcombe programme (a behaviour modification programme which mainly rewards fluent speech) to general relaxation. Therapists had also worked on encouraging clients to use looser articulations, easy-relaxed starts, control of breathing and syllable timed speech. Some work had been done on identification of the fluency difficulties.

All therapists had worked indirectly on the fluency in some way. Most had worked on changing the communication environment and the reactions of the listener. Nine therapists had tried parent-child interaction therapy and other life-style changes; seven had used special time. A few had tried other approaches such as the use of alternative means (signing and reading) as a way of reducing pressure on communication.

Outcomes

We asked respondents to list the outcomes they felt had been achieved. We also asked them to write a short account of work with a client, thus providing some qualitative information. There was not much enthusiasm about the use of direct fluency work. Therapists all commented on the lack of generalisation of any speech change. Comments such as "can use techniques with constant reinforcement" and "is less dysfluent in sessions" were the most positive.

However, there were a number of positive comments about general change seen in clients. Comments such as "more willing to send a range of messages", "more confident" were made, and some definite positive changes were seen in other language aspects for example "increased length and complexity of sentences", and "improved self-monitoring". Positive change in the way in which others (teachers and parents) dealt with the dysfluency was also noted. Unfortunately, there was no way of telling whether a particular approach led to a particular outcome, as most therapists used a range of treatments with their clients.

The qualitative data gave more detail about what was done and whether it worked. Eighteen stories were told: five were of adults, nine of children over 10 and four under 10. More specific work on slowing the speech and on relaxation was done with the adults than with the younger clients. Therapists did more general communication skills work with the over-10s and more indirect work through others with the under-10s. No positive change was reported in the fluency of the adult clients although therapists noted some improvement in confidence. The nine children/young people over 10 showed varied responses but respondents perceived their lack of awareness and lack of cognitive maturity as having an impact on their ability to succeed. Respondents commented more positively on the under-10 year old group's improved fluency — this was generally linked to parent or teacher awareness and changed response to the dysfluencies.

Discussion

The survey, although small, appeared to represent the range of therapists who see clients with Down's syndrome and the techniques they use. It was interesting to see that the dysfluencies identified appeared to be predominantly stuttering-like in nature. It is also interesting to note that very few clients were identified as showing awareness — a few showed some embarrassment or concern — and almost none were seen as actively avoiding words or situations. This could well link with the lack of cognitive maturity therapists identified.

Manning (1999) considers cognitive and emotional maturity necessary for success in stuttering therapy and certainly the clients reported here showed little change in their speech behaviours. What change occurred was seen in either general language improvement and/or in confidence. These changes probably occurred without or despite of any work on the fluency. Attempts to teach control of fluency might well be contra-indicated — too much pressure put onto a vulnerable linguistic system in the absence of good self-monitoring is the recipe for failure, self-doubt and reduced self-esteem.

References:

Devenny DA, Silverman WP. Speech dysfluency and manual specialization in Down's syndrome. Journal of Mental Deficiency Research 1990; 34: 253-260.

Manning W. Progress under the surface and over time. In: Ratner N, Healey EC (eds). Stuttering Research and Practice: Bridging the gap. Mahwah, NJ: Lawrence Erlbaum, 1999; 23-130.

Preus A. Stuttering in Down's syndrome. In: Lebrun Y, Hoops R (eds) Neurolinguistic Approaches to Stuttering. The Hague: Mouton, 1973.

Preus A. Treatment of mentally retarded stutterers. Journal of Fluency Disorders 1990; 15: 223-233.

Thurman S, Barnes-Brett T, Ryan C, Tierney L. Reducing stammering in adults with mental handicaps. Mental Handicap 1986; 14: 62-64.

Yairi E. Disfluency characteristics of childhood stuttering. In: Curlee R, Siegel G (eds). Nature and Treatment of Stuttering: New directions. Second edition. Boston: Allyn and Bacon, 1997; 49-79.

Acknowledgement