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Awareness and Anxiety. What evidence is there of either in young adults with Down's syndrome who are dysfluent?

Jan Logan | 01.12.2005

Oxford Dysfluency Conference 2005. Presenter: Monica Bray (Leeds Metropolitan University, UK). By Jan Logan, City Lit London

Monica BrayIn this study Monica looked in detail at the attitudes, awareness and feelings as well as the dysfluent speech of two young men (19 to 22 years) with Down's syndrome. She began her presentation by reminding us of studies making the connection between increased awareness, anxiety and increased 'struggle behaviour' in stammering. Monica pointed out that whilst these links have been made both clinically and in the literature, no studies exploring awareness and anxiety have been undertaken with people with Down's syndrome.

Reflecting on her work with people with Down's syndrome who stammer, the question that interested Monica was, "do awareness, anxiety and 'struggle' behaviour co-exist in this client group?"

What if...?

Monica invited the audience to consider other possibilities: "What if":

  • these links between awareness and struggle are not essential?
  • these features can occur in isolation?
  • there is a group of people within whom struggle behaviour can occur without evidence of awareness?

Monica went on to outline the study which she saw as a preliminary investigation aimed at answering these questions.

The process

Monica discussed the procedure she undertook to ensure the clients were prepared for the sessions. I was aware of Monica's considerable skill, knowledge and sensitivity when working with clients with cognitive difficulties as she discussed how she went about ensuring procedures and measures were rigorous and sensitive. Sessions were held in a familiar environment, the clients' keenness to be involved was ascertained, a symbol-based consent form was used and initial sessions held to develop their communication strategies further.

Measures used

Monica talked about the importance of making reasonable adjustments to ensure the 'tools' used to measure anxiety and awareness were accessible. She then outlined her reasons for selecting the measures she did and outlined necessary adjustments.

The learning

Monica gave details of her findings as well as concrete illustrations of participants' responses on particular tasks. Hearing these responses gave me more of a sense of the individuals involved.

Monica discussed the difficulties she experienced ensuring the study was both reliable and valid and described some of the problems encountered. She offered the following helpful questions which we might ask ourselves if setting up a similar study:

  • Are the concepts understandable?
  • Do the questions make sense?
  • Do the clients answer reliably?
  • Do the clients have self-awareness?

Summary and conclusions

While evidence of self-awareness was clear for both participants, there was less evidence to suggest that they were aware of speaking differently or stammering. Despite overt struggle, severe stammering and reduced intelligibility, both clients construed themselves as talking easily and had positive views of themselves as speakers.

Monica concluded that despite the appearance of 'struggle' behaviour, both participants were able to deny awareness of difficulties with their speech. Monica reported now feeling more confident 'struggle' behaviour does not always indicate awareness/anxiety. She suggested that as therapists, we need to be careful not to entrap people in further anxiety by focussing on the difficulties they experience with speaking. She pointed out that the perception of 'not talking well' lies within other people, suggesting a useful approach would be to educate others in communication skills so the communication of people who stammer with Down's Syndrome is made more accessible.

From the Winter 2005 edition of Speaking Out