Down's Syndrome & Cluttering

One of my favorite tasks is searching the speech/language pathology journals for answers to specific questions posed by SLPs and by parents. I truly enjoy reading journal articles! I allow myself the luxury of wallowing in this kind of reading when I need to locate information regarding treatment choices for individual students.

A school-based SLP recently asked me about a student with Down’s syndrome. I could find only a few articles specifically about Down’s syndrome and stuttering with the kind of credibility necessary to support treatment decision making.

Judith Eckardt wrote an article for the International Stuttering Awareness Day online conference (1) in which she explained that her observation was that stuttering emerged around 8-10 years of age, about the same time these children were combining 2-3 word utterances and had rapid vocabulary development. This would be the time for “normal developmental stuttering” given the language delay. She also observed “shame of stuttering” in older Down’s students. She recalls, “I still remember the look of surprise and then a smile from the 17 year old, when I told her ‘It’s OK to stutter’ and ‘It’s NOT your Fault.’” (p.3)

There was also a presentation at the 2006 ASHA Convention specifically about stuttering and Down’s children. (2) I was not at the presentation, the handouts available on line make an explicit connection between Down’s and cluttering.

David Daley wrote an article for the 2007 International Stuttering Awareness Conference (3) in which he provides a checklist called the Predictive Cluttering Inventory. The checklist has 33 items divided into four categories: pragmatics, speech-motor, language-cognition, and motor coordination-writing problems. Each item is rated on a 7-point scale. He suggests that the higher the score on this inventory, the higher the probability that the speaker is a clutterer. Scores of “120 or more are quite rare. Typically, clients we have seen present with scores between 80 and 120. These scores we believe are indicative of a classification or diagnosis we call ‘Clutterer-Stutterer.’ One third of stuttering clients typically show some signs of cluttering.” (p.2) I have David Daley’s 1996 publication of The Source for Stuttering and Cluttering and in it he provides an extensive comparison of stuttering vs. cluttering.

The ASHALeader, an online publication of the American Speech Language Hearing Association, published an update on cluttering in 2003. (4) This article seemed to down play the role of language in the diagnosis. “Another vexing issue is the extent to which language planning and pragmatic problems are implicated in the diagnosis of cluttering. We do not currently include language difficulties in the definition because there appear to be at least a few clutterers for whom language problems are not evident.” (p.2) Rate problems are central to cluttering, says this article. “Clutterers also tend to slur or omit syllables of longer words, which compromise intelligibility during spurts of rapid speech.” (p.2) Many other optional symptoms include: lack of awareness of the problem, poor handwriting, confusing, disorganized language, temporary improvement when asked to ‘slow down,’ social or vocational problems, distractibility, hyperactivity, auditory perceptual difficulties, learning disabilities, and apraxia.

I think back upon 12 years of working exclusively with children and teens who stutter and realize that week after week, therapy activities often engaged my students in rate control, speech-motor practice, self-monitoring, educational counseling/mentoring, and language organization. These are relevant to both stuttering and cluttering. I recall how, eventually, so many of my students were found to have co-existing problems including Non-Verbal Learning Disorder, Attention Deficit, Sensory Integration Disorder, Dyslexia, Learning Disability and Temperamental Sensitivity. Others had family issues such as alcoholism, the birth of a sibling, moving to a new home, financial stress, and growing up in a multi-lingual environment.

I reflect on how experts in the field of stuttering have wondered aloud exactly why some treatment approaches seem effective with some individuals and not others. This has led to two stunning generalizations: 1. The client-clinician relationship matters more than the treatment approach; and, 2. Stuttering is a heterogeneous disorder with subtypes requiring different treatment approaches. Are these two concepts consistent with one another?!

All this causes me to pause and wonder, in the end, what separates me from the ‘snake oil salesman.’ All professional literature at my fingertips still leaves me with abiguity. Evidence Based Practice is not only literature based, but values clinician judgment. My judgments regarding client treatment are based on professional knowledge, ethical practice, and family feedback. Unlike 2+2, there is no single right answer in speech pathology.

(1) Judith Eckardt (2008) “Treating Down’s Children Who Stutter” http://www.mnsu.edu/comdis/isad11/papers/eckardt11.html
(2) Kurt Eggers & Chris De Bal (2006) Speech Dysfluencies in People with Down’s Syndrome Nov. 17, ASHA, Miami Beach http://convention.asha.org/2006/handouts/855_1304Eggers_Kurt_090842_112206071130.pdf
(3) David Daley (2007) “Cluttering: Characteristics Identified as Diagnostically Significant by 60 Fluency Experts” http://www.mnsu.edu/comdis/isad10/papers/daly10.html
(4) St. Louis, K, Myers, F.L., Bakker, K. (2003) “Cluttering Updated” (2003, Nov. 18) The ASHA Leader, pp 4-5, 20-22; http://www.asha.org/about/publications/leader-online/archives/2003/q4/f031118a.htm

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This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.