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Exciting Collaboration Turns Cluttering Fascinating: A Story Told by a Person Who Clutters and a Speech and Language Therapist From Norway

International Cluttering Association
Trondheim, Norway

Hilda Sønsterud

Bredtvet Resource Centre
Oslo, Norway

	Abstract

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The purpose of this article is to describe some ways in which a person who clutters and a speech and language therapist from Norway have worked together to spread awareness about cluttering. The article outlines how a consumer and a therapist can complement each other by combining their perspectives. The content of the article has implications for the development of cluttering awareness programs worldwide.

	Introduction

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Even though cluttering has been recognized as a type of fluency disorder in Norway for decades, there is little public awareness of this disorder, and much remains to be done to understand the nature of this disorder and develop adequate treatments for it. In Norway, articles by Preus (1992) and Teigland (1996) have made speech-language therapists (SLTs) more aware of the phenomenon of cluttering. Largely thanks to their work, SLTs in Norway have recognized cluttering as a type of fluency disorder for decades. Their work is still relevant, and their articles are still referred to in the international literature. Preus and Teigland both worked at Bredtvet Resource Centre, a national center with interdisciplinary expertise in the field of speech, language, and communication disorders. They were on the front lines of introducing SLTs to cluttering.

After the establishment of the International Cluttering Association (ICA) in May 2007, we have the impression that the focus on cluttering and the engagement related to cluttering issues have increased among SLTs in Norway, and the motivation for continued work on cluttering has improved. Through the ICA, some people with cluttering and several SLTs from Norway have established close links with the international cluttering community. In many ways, the ICA has contributed to a higher level of activity and more local and regional collaboration.

	Getting the Word Out

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One of the primary goals of the ICA is to increase public and professional awareness about cluttering. This goal is also of primary importance in Norway. Therefore, after the arrival from the First World Congress for Cluttering in Bulgaria (2007), we started actively presenting the ICA to others, both through published material and through talks and meetings. The information was also dispersed through different professional networks and their e-mail lists. The editor of the national periodical journal for SLT's has been very positive regarding our requests for printing announcements about the ICA in the journal.

Following the congress in Bulgaria, Heitmann and Sønsterud (2007) wrote a joint article in Norwegian outlining the latest international studies on cluttering and giving information about the ICA. Kvenseth (2007) contributed to the national journal for SLTs with her own article about how it feels to be a person with cluttering and how she has personally dealt with her cluttering. Several SLTs expressed an interest in these two articles.

So far, we think the awareness of cluttering has increased, at least among SLTs in Norway. The challenge is to provide more information to the public in general, and this is an ongoing task. In the ICA, there are three Norwegians, covering different parts of Norway: Ragnhild Heitmann (SLT) from the western part of Norway, Hilda Sønsterud (SLT) from the eastern part of Norway, and Helene Kvenseth, a person with cluttering (PWC), from the mid-part of Norway.

In Norway there are some local and regional networks for professionals working with fluency disorders. One of these networks is hosted by Bredtvet Resource Centre and The Norwegian Association of Speech and Language Therapists in the southeastern part of Norway. This network or forum provides an arena where the SLTs can meet and discuss different topics within the field of fluency disorders. Very often different perspectives are sought by inviting different guest speakers (e.g., people with cluttering, people who stutter, researchers, and clinicians). These meetings encourage discussion and sharing of different points of view.

In April 2008, the topic for the meeting of this network was cluttering, and Kvenseth was the invited guest speaker. She gave a brief introduction before taking questions from the audience. She showed great insight and shared a great deal of information about cluttering and her experiences with treatment. The SLTs seemed to benefit from this meeting, and the session with questions and answers later developed into a positive exchange among Kvenseth, Sønsterud, and the therapists.

Kvenseth later described this meeting as the turning point in her experience with cluttering. From simply being an annoyance, cluttering now turned into something positive for her. She said she found the disorder fascinating, almost felt proud to be a person with cluttering behavior.

There are more opportunities for Kvenseth to present her experience as a person with cluttering. Every year Bredtvet Recourse Centre has an "Open Day," when the center is open to the public with exhibits and lectures on various topics in speech and language disorders. In 2009, Kvenseth and Sønsterud will present a joint, informal session on cluttering with a focus on important elements in assessment and treatment. The presentation will also include advice for parents and teachers.

	Connecting With Persons Who Clutter

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Because the Norwegian population is only about 4.7 million, it is unrealistic to create an association exclusively for individuals with cluttering. During the annual meeting of the Norwegian national stuttering association (NIFS) in March 2008, the association formally included cluttering in its mandate by specifically mentioning the disorder in its by-laws. The suggestion to include cluttering was made by two Heitmann and Sønsterud, two SLTs who saw the need for a meeting place for people with cluttering. It is a long-established fact that cluttering frequently coexists with stuttering, "although there is disagreement as to the degree of overlap" (Ward, 2006, p. 149; see also Daly, 1996; Preus, 1992; Weiss, 1964); hence, the stuttering association is an obvious "home" for people with cluttering.

Although cluttering is in some ways related to stuttering, in other ways it is different (Myers & St. Louis, 1992). We consider it very important to continue the work to develop cluttering contacts and networks. Kvenseth is an active participant in the international Yahoo Cluttering self-help group (founded and led by Joseph Dewey), and the number of Norwegian "cluttering contacts" is increasing. Through this network, she keeps in contact with people from different parts of the world. Facebook is another excellent instrument for contacting and meeting like-minded individuals. Kvenseth is connected to Facebook and has contact with people with cluttering in this network.

We hope that these networks can be suitable tools for establishing contacts between more people with cluttering. The collaboration with the Norwegian national stuttering association may also lead to a raised public awareness of cluttering in Norway, which may be a starting point for setting up cluttering self-help groups in the future.

Our experience tells us that the establishment of cluttering groups is challenging, because the number of people with cluttering who search for help is not that large, and the number may differ from time to time. Therefore, in order to establish more connections between people with cluttering, SLTs have to use their professional networks as well. Further collaboration between people with cluttering and the professionals is vital in this context.

	Reflections of Helene Kvenseth

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For my part, there are several reasons for being involved in helping to increase the awareness of cluttering. One reason is very selfish; I am fully aware of the fact that my cluttering will never magically disappear. If I am going to talk in a manner that is understandable, I need to constantly remind myself that I still have cluttering and discover new levels of personal understanding. Writing texts, having access to a speech and language therapist knowledgeable about cluttering, and educating others are helpful methods in doing so.

A second reason for working with others goes beyond cluttering. In recent years, I have met so many nice people as a result of cluttering that this alone is reason enough. I am a shy person who prefers to be invisible. The work I do related to cluttering helps me overcome my shyness. When writing a text or doing a presentation, I have to deal with the fact that people now know who I am. For me, this is very healthy.

Another element is helping others. When I grew up, very little information about cluttering was easily available, which made having the disorder a rather lonely experience. I am trying to demystify cluttering and inform others that having cluttering does not have to be the end of the world. There are many aspects or symptoms of cluttering and not all clutterers display all symptoms. My version is rather simple, and, even though it can be really annoying at times, I no longer consider it to be something that prevents me from living my life.

	Reflections of Hilda Sønsterud

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When I first met Helene Kvenseth, at the First World Congress for Cluttering in Bulgaria in 2007, I immediately recognized her wisdom and insight, including insight into her own disorder. It was easy to register that her level of awareness was very high. We shared a common interest in the nature of cluttering and had several talks about cluttering issues and treatment. She shared her personal experiences and what she found useful for her own communicative development. I learned much from her while we were in Bulgaria, and several SLTs learned from her personal stories since then. After the congress, we established a collaborative relationship and a friendship. She continues to be very positive about sharing ideas and reflections about different cluttering issues.

Since I first met Helene, the importance of informing colleagues about speech anxiety and negative emotions that may occur in cluttering has become more relevant, especially as relates to adolescents and adults. Even though a lack of awareness is very often a characteristic feature of cluttering, we should not forget that "people with cluttering are often aware of their speech disfluencies, but not at the time they occur" (van Zaalen-op't Hof, 2009) and "Some cluttering clients actually do have good awareness and present at clinic frustrated by their inability to communicate clearly" (Ward, 2006, p. 364).

Everyday face-to-face conversations are generally acknowledged as the primordial type of communication. In these contexts, a person's identity and relations are usually established and maintained. For people with cluttering who have some insight about their communicative inabilities, such conversations may be doubly frustrating: they are aware that they suffer from a communication disorder, but may not to be aware of when cluttering occurs.

In order for a person with cluttering to represent and advocate for others with cluttering and to inform the general public about the nature of cluttering, she needs to be highly conscious of her own disorder. Furthermore, to be able to talk about her own challenges in different communication situations, this individual has to have reached nearly the highest level in treatment: self-monitoring and maintenance of fluency. "Control over an extended time period rests on the individual's ability to self-monitor, and to put into practice the techniques and procedures learned in therapy" (Ward, 2006, p. 373).

I believe that Helene Kvenseth has reached nearly the highest level, the level where she is able to use her techniques and procedures nearly every time she wants to. Now, she is able to switch between different levels of speech control, depending on persons and situations (with some "slip-ups" or relapses, of course). According to Helene, she sometimes she can control her speech, and sometimes she cannot. Sometimes the only way she can find out if people have understood her is by analyzing the communicative context afterwards. Typically, she finds that the solution is to look for clues from her listeners, such as gazing, puzzled looks, or constant requests that sentences be repeated.

I think it is a win-win situation for all of us if the perspectives from the people with cluttering and the SLTs are combined. Helene Kvenseth's contributions have made more people aware of even more aspects of cluttering and cluttering treatment. At the same time, she has expressed gratitude for the opportunity to share her experiences with others. She has said, "Learning to speak in a new way is challenging. Before, when I was learning to pronounce words in an understandable manner, the words felt extremely unnatural. When I speak understandable now, it feels and sounds natural. The bad feelings are disappearing with practice too" (H. Kvenseth, personal communication, April 29, 2008).

	Treatment and Maintenance

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For many people with cluttering, controlling speech is a life-long process. Helene Kvenseth has said, "Controlling cluttering is a two step process: One, learning to control the speech and two, continue to control the speech" (H. Kvenseth, personal communication, April 29, 2008).

Undoubtedly, she is at the second step. By representing cluttering in Norway, she gets numerous opportunities to maintain her speech control in new communication situations, constantly expanding her zone of comfort.

It is important that the person with cluttering and the SLT work together to find the right tool from the "cluttering tool-box," in particular, to find a way of dealing with the maintenance of the skills learned in cluttering therapy. The way of dealing with these challenges may vary from one person to another. It is highly important that the treatment is carried out in an individualized way. "To foster transfer and/or maintenance, the clinician should program specific activities and assignments designed specifically for each client's needs" (St Louis, Myers, Bakker, & Raphael, 2007, p. 319).

In many ways, Helene Kvenseth has found her own way of maintaining her communication skills. She has become her own SLT, but realizes that, if she forgets to make a deliberate effort to maintain the skills she's learned, she will go back to her natural "fast self." She has found her "specific activity" for managing her cluttering behavior in the long run too, namely to be involved in the ICA, to increase awareness of cluttering, and to help others. For her, it is a positive realization, and it makes her keep going forward, open-minded and with an explicit wish to continue the process of self-discovery.

	References

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Daly, D. A. (1996). The source for stuttering and cluttering . East Moline, IL: LinguiSystems.

Heitmann, R., & Sønsterud, H. (2007). First World Conference on Cluttering. Norsk Tidsskrift for Logopedi, 3, 34-37.

Kvenseth, H. (2007). Det var ikke jeg som hadde et problem, det var de andre som ikke forsto meg. Norsk Tidsskrift for Logopedi, 3, 38-39.

Myers, F. L., & St. Louis, K. O. (1992). Cluttering: A clinical perspective . Kibworth: Far Communications.

Preus, A. (1992). Cluttering or stuttering: Related, different or antagonistic disorders. In F. L. Myers & K. O. St Louis (Eds.), Cluttering: A clinical perspective . Kibworth: Far Communications

St. Louis, K. O., Myers, F. L., Bakker, K., & Raphael, L. J. (2007). Understanding and treating cluttering. In E. G. Conture & R. F. Curlee (Eds.), Stuttering and related disorders of fluency (3rd ed.). New York: Thieme

Teigland, A. (1996). A study of pragmatic skills of clutterers and normal speakers. Journal of Fluency Disorders, 21, 201-214

Van Zaalen-op't Hof, Y. (2009, March). Cluttering assessment, differential diagnostics between cluttering, stuttering and learning disabilities. Workshop presented at the University of Oslo, Norway.

Ward, D. (2006). Stuttering and cluttering: Frameworks for understanding and treatment . New York: Psychology Press.

Weiss, D. (1964). Cluttering . Englewood Cliffs, NJ: Prentice-Hall.

This Article Abstract Full Text (PDF) Alert me when this article is cited Alert me if a correction is posted Services Email this article to a friend Similar articles in this journal Alert me to new issues of the journal Download to citation manager Google Scholar Articles by Kvenseth, H. Articles by Sønsterud, H.