The Worldwide Panorama of Cluttering: Non-Western Countries
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About the presenter: Isabella Reichel, Ph.D., CCC-SLP/A, is an associate professor at the graduate program in speech-language pathology at Touro College. She is a Board-recognized specialist, Fluency Disorders. She has been specializing in this field for over three decades. Her research on the topics of emotional intelligence, stigma, stuttering, clutterring, and international collaboration among professionals has been published and presented worldwide. She is the Chair of the Committee of International Representatives of the ICA. |
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About the presenter Klaas Bakker, Ph.D./CCC-SLP, associated with Missouri State University since 1990; specializes in fluency disorders; research focus on fluency disorders (assessment and diagnostic evaluation of cluttering and stuttering); develops new technologies for the assessment and measurement of clinical aspects of speech (dys)fluency; Associate Editor for the Journal of Fluency Disorders; Chair of the Website development for the International Cluttering Association. |
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About the presenterFlorence Myers, Ph.D., CCC/SLP is a Professor at Adelphi University, Garden City, New York. She has published widely in the areas of cluttering and stuttering. Her current interests include the nature of cluttering and how it relates to stuttering, as well as treatment approaches to cluttering. She was co-chair of the executive committee to organize the First International Conference on Cluttering held in Bulgaria, May 12-14, 2007. |
The Worldwide Panorama of Cluttering: Non-Western Countries
by Isabella Reichel, Klaas Bakker, and Florence Myers
from New York and Missouri, USA
With the advent of the 21st century and increased globalization, there is increased interconnectedness among individuals around the world. As a result of enhanced international communication, speech therapists, researchers, and people with cluttering (PWC) banded together in 2007, on the occasion of the First World Conference on Cluttering, to create what has become known as the International Cluttering Association (ICA). In the three years since the ICA was founded, data have been collected about the status of cluttering awareness, understanding, and clinical services as to PWC around the world. For example, an International Cluttering Survey (ICS; Reichel & Bakker, 2009) provided initial input from the ICA's international representatives of 25 countries. The present article continues to build on the initial Reichel et al. survey, but the new survey approached the respondents with new questions to make some inferences about the status of knowledge and awareness of cluttering worldwide in the hope that this will indicate how the ICA can effectively advocate for those with cluttering, encourage effective research and education and promote forms of help consistent with local circumstances.
Responses to the survey analyzed in this article were submitted by respondents from Africa, Asia, Eastern Europe, and South America. The countries and individuals represented are: Brazil (rep. Claudia de Andrade), China (Steve An Xue), India (Maya Sanghi), Indonesia (Muhammad Ishom), Japan (Shoko Miyamoto), Jordan (Maisa Haj Tas), Lithuania (Vilma Makauskiene), Nigeria (Ademola Grace), Poland (Jolanta Goral- PoB rola), and the Sudan (Sami Awad Yassin). The representative of Sudan actually polled 27 people (psychologists and special educators), and the representative of India polled 6 speech therapists. This survey describes a composite of their responses.
Disclaimer. While the following information and tentative conclusions are very important and represent the best information available, this information was not collected in a standardized or controlled way. Country representatives sometimes are speech therapists (and may be connected with universities) but in other situations they may be other professionals or family members of PWC (or perhaps PWC themselves).We have no guarantee that the respondents all view cluttering in the same light. Some of the questions are out of the areas of expertise of the respondents so that the responses may be impressions and views rather than based on facts or research. Finally, some countries are so large that there is no guarantee that answers provided may necessarily apply to an entire country and its (sub-) cultures.
Results and a brief interpretation of the responses to the survey follow.
- Is there a word for the disorder of cluttering in the language of your country?
Respondents from seventy per cent of the countries believe that their countries have a word for cluttering. Thirty per cent of the respondents indicated that there is no term to refer to cluttering in their language (China, Japan, Nigeria and technically also all countries where Arabic is the primary language). In Jordan, a term in Arabic was recently made up in order to translate portions of the ICA website into Arabic. The newly suggested term is not formally accepted as a term of the language, however. Some languages use the English term, cluttering - Awareness about cluttering in your country
No respondents considered cluttering a condition of which its population as a whole is aware. In fact, 70% of the respondents considered the awareness in their country to be minimal, and 30% reported no awareness of cluttering in their countries (Brazil, Indonesia, Lithuania). This, then, prompts questions about how this affects the circumstances of PWC in these countries, or any options for finding effective help for their problem. In such research we might also take note of whether or not there is awareness or significant recognition of other fluency disorders, like stuttering. Importantly, this questionnaire involved countries with languages that in most cases, as indicated above, have words for cluttering, and thus some type of associated awareness as well. One of the respondents from India believes that awarensess of cluttering is better among people in a high socio-economic group because good communication skills are important for professional and social advancement in their communities. This assumption is interesting as it could vary from country to country and should be scientifically verified. - The way cluttering is understood in your country
The responses ranged from complete lack of understanding of this disorder (Indonesia, Jordan, and Nigeria, and most of respondents from Sudan) to a more professional recognition of cluttering, where the understanding varied between cluttering being interpreted as a fluency disorder, or perhaps a multidimensional failure of communication, such as, "on one hand, cluttering is listed as a fluency disorder, and on the other hand, it encompasses a a variety of areas, such as language, cognition, and motor system" (India). In the case of China and Japan, people who clutter are perceived similarly as people who stutter. Clearly, at this point any of the professional interpretations are viable understandings awaiting scientific scrutiny, while professionals in other countries can benefit from education about these different interpretations of cluttering. Answering this question probes into the definition used for cluttering, but the question did not force the respondents to consider a definition and so was interpreted variously across the respondents. - Whether cluttering is viewed differently from stuttering in your country
The answers to this question mirrored answers previously given. That is, in many countries where there is no word for, awareness, or good understanding of cluttering, there is also a weak or nonexistent distinction between cluttering and stuttering. These answers then highlight how important it is to begin to educate people about the differences between cluttering and stuttering. On the other hand, 25 out of the 27 respondents from the Sudan stated that they knew the difference between stuttering and cluttering. For participants of this conference from the countries where there is no or a limited understanding about the differences between cluttering and stuttering, a brief overview is presented at the end of this paper. - Service providers treating cluttering in your country
Answers to this question suggest that although in half a dozen of the countries questioned speech therapists treat cluttering (India, Jordan, Lithuania, Nigeria, Poland, and Sudan), in a few other countries speech therapists have difficulty doing so (Brazil, Japan). Other specialists (physicians, neurologists, psychologists or special educators) may also work with PWC in China, Lithuania, and Sudan. Finally, cluttering is not treated in Indonesia. - The role taken by parents and PWC in seeking help
Since service providers in most countries neglect to distinguish, let alone to treat cluttering, parents and PWC do not seek services to treat cluttering (per 70% of the respondents). Parents and PWC tend to do nothing about cluttering since they think that cluttering is genetic (Indonesia) or because they misdiagnose cluttering for stuttering (Poland), or they "just live with it" (Japan). Another explanation why family members ignore cluttering is due to the fact that physical development is given more importance, and speech care is considered a luxury; parents and PWC seek help for cluttering when it interferes with education, communication, and/or occupation (India). Occasionally, parents bring their children for treatment after reading the ICA website (Jordan). - Long distance therapy (via the phone, or Internet) in your country
About two-thirds of the populations of the surveyed countries live in rural areas except for Brazil, Lithuania, Japan, and Jordan, where about a third of the population lives in rural areas, and Indonesia where almost half of the population lives in rural areas. Long distance therapy is virtually nonexistent in all of the surveyed countries, except for rare cases in Japan. It would seem that long distance therapy would in many cases be a useful alternative (phone, Internet, Skype, Satellite TV), especially in large countries and countries with mostly rural populations. While these options are actively considered in some western countries (Australia and Canada), they are viewed as creating an ethical problem within the USA (where ASHA's ethical standards specify that the SLP has to be in the same room in order to provide physical assistance when needed, e.g., when the client chokes). Opinions about the use of remote speech therapy vary widely even though in the medical field long distance therapy is already established. - Websites with information on cluttering targeting countries lacking speech therapy services.
A majority of the respondents in the countries questioned do not have local websites in support of speech therapy (let alone support for therapy with PWC), except for Brazil, Japan, and Poland. Organizing such websites could be helpful for: providing information, raising awareness and improving attitudes toward cluttering in professionals and the general public, recognition of the problem, and demonstrating that help can be available or even describing diagnosis and treatment methods. This is an area where the ICA can be helpful, not only with translations within its own website, but with assisting in the creation of local websites. Suggestions were made to translate additional material on the ICA website (China, Japan, Lithuania, Nigeria), and to set up a website with information targeting countries lacking speech therapy service (Nigeria). - Proposed roles of the ICA
All of the respondents acknowledged that their countries could benefit from the ICA. The respondents suggested one or more of the following roles the ICA may play in providing resources for understanding and managing cluttering as well as facilitating professional collaboration: providing diagnosic and therapeutic services and raising the awareness of cluttering (Sudan); facilitating collaboration among professionals (Jordan); organizing international seminars for speech therapists (Lithuania and Sudan); creating packages and sponsoring specialization courses for professionals; arranging to train the trainers; preparing teaching materials for students; and encouraging research in cluttering management (Nigeria). - Challenges in managing cluttering in your country
The respondents identified the following challenges in managing cluttering in their countries: Lack of affective evidence-based treatment and universal protocol of the diagnosis; lack of epidemiological data (Brazil); shortage of professionals who know about cluttering (China, Indonesia, Japan, Jordan, and Nigeria); poor awareness about cluttering (China, India, Jordan); lack of theoretical and practical knowledge (India, Lithuania, Poland); difficulties in making the client aware of cluttering, and low motivation in the client (India); people don't seek help due to the high cost and long distances (Nigeria); the concept of cluttering is complex, and etiology includes many psychological and biological factors (Poland and Sudan); lacking of adequate support from specialized entities; lack of sufficient centers and expensive tuition for university students (Sudan).
Differential Diagnostic Distinction of Cluttering and Stuttering
There is a sizable body of literature on the subject of distinguishing cluttering and stuttering. Also, a major mission of the ICA is to heighten awareness of cluttering in the international community. This awareness in turn can lead to advances in research and clinical treatment of individuals who clutter. A logical starting point to raise awareness is to point to behavioral features that are associated with cluttering. Cluttering is often considered a fluency disorder. Fluency disorders are marked by the message not having an onward flow of speech and language. Cluttering may be related to but is not the same as stuttering. It should be noted that there are individuals who have cluttering only, stuttering only, and a number of individuals who exhibit both cluttering and stuttering. What are some features that distinguish cluttering from stuttering? While we still need a great deal of research to substantiate the distinctive features between stuttering and cluttering, clinicians and consumers cannot wait for this research to come forth before treating PWC.
Cluttering is often perceived to be a rate-based disorder. That is, listeners perceive the speech of PWC to be excessively fast and/or irregular in rate. The perception of fast rate may in fact be due to an excessively rapid execution of speech (especially when the speaker is talking in an informal setting on an exciting or complex topic), or it may be influenced by the fact that the speech is not always easily understood and therefore perceived to be "faster than the listener can handle." The perception of rate irregularity may be influenced by the speaker pausing in the middle of a thought at an unexpected juncture, to be followed by a subsequent spurt of speech; or by the injection of fillers, incomplete phrases with subsequent revisions. In this sense, that the message is not ongoing or does not flow based on listener expectations, cluttering may rightfully be considered a fluency disorder. As a theoretical notion, in part based on comments made by PWC themselves, it may be that the PWC is trying to process multiple thoughts that seem to "bombard" the speaker; however, for whatever reason, the PWC does not modulate his rate or manner of production to organize and/or sequence his thoughts into coherent and cohesive messages. When the urge to output the messages outpaces his ability to plan and execute the speech and thought units (manifested through language), a number of problems can show up at various levels of the communication system that give rise to the disorganization (or dissynergy) that is often seen in cluttering.
In addition to the behaviors discussed above, cluttering may be perceived based on other characteristics that result possibly from speaking faster than one can handle. At this point, we are only speculating that the PWC is speaking faster than his capacity. However, strong clinical evidence that at least indirectly supports the demands-capacity notion is that the various characteristics of dissynergy are markedly improved once the speaker slows down.) One behavior may be that the PWC leaves out sounds and syllables, or may "shortchange" a sound or syllable. For example, instead of articulating each syllable in the word "telephone," the speaker may reduce the word to "te-phone" by omitting the unstressed syllable. Vowels are not spoken distinctly. The overall effect is that the person seems to be mumbling, so that from time to time it is difficult to understand the speaker. The PWC may also exhibit disfluencies. However, the "pure" clutterer exhibits disfluencies that can be distinguished from those of the "pure" stutterer. Specifically, the disfluencies of PWC reflect what is often called "linguistic maze" behaviors such as interjections and revisions. These disfluencies may reflect issues with language planning. The disfluencies associated with stuttering reflect motoric struggle behaviors, greater fragmentations of intended words such as sound- and syllable repetitions, and physiological tension and effortfulness -- especially at the level of the vocal folds which "lock" so that the sound that comes out is distorted or no sound comes out at all during the momentary blockage of the larynx. Many PWS view the vocal folds as a major repository of physiological discoordination; this laryngeal tension generates voice qualities that reflect phonatory aberrations. PWC do not seem to have this laryngeal tension and struggle. We often know what the PWS wants to say, and in fact are waiting for a syllable to be produced in an intended word known to both speaker and listener (e.g., What a lovely be- be- be-baaaaby!). This is in contrast to listening to a PWC. At times we don't know what they are saying because their messages are unclear and seem to be "splintered" (e.g., many revisions that may lack focal points that tie the storyline together). Perhaps a related distinction between cluttering and stuttering is in the arena of intentions. The PWS has full cognizance of the intended message -- often to the point of scanning ahead in order to substitute a feared upcoming word, abbreviating a response or not talking at all to avoid stuttering. The PWC may have multiple and simultaneous intentions or may momentarily still be trying to formulate the intentions but does not appear to have the inclination to scan, organize, and modulate. Research is still needed to study these clinical insights offered by some PWC.
Another possible difference between cluttering and stuttering is that the PWC may not be fully aware that their messages are not clear, whereas PWS often are keenly if not painfully aware that they are having difficulty in getting the intended word out. The blocks that PWS experience result in feelings of embarrassment, anxiety, and attempts to hide the stuttering. Some PWC are, however, aware that others cannot understand their messages. This awareness can also cause feelings of anxiety and may, over time, influence the quality of life of PWC as it does PWS. Other PWC seem not to be fully aware, so that there is no evident attempts to modify one's output toward increased clarity, coherence, and cohesiveness of the message. In still other instance, some PWC describe a basic inclination to rush through things and to do several things, including talking, at the same time. In these instances, the onus is on the listener to try to decipher what is being said.
Conclusions
It seems that the recognition and treatment of cluttering are not necessarily dependent on the recipient's level of economic development. For example, there is virtually no recognition in China and very little in Japan; however, there is recognition for it in Sudan and Nigeria where the economic resources are expected to be more limited. In other words, cultural attitudes can interact with options for PWC more than economical wealth. The fact that cluttering is known and that there is a term for it does not guarantee the availability of actual services.
The process of cross-cultural and multinational partnering to discuss and develop services for PWC among professionals continues to contribute to create a worldwide panorama on cluttering. This serves as a foundation to promote theoretical paradigms, international research, and exchange of resources and intervention methodologies for managing cluttering. After all, the views expressed by respondents from the ten countries considered in this article will, it is hoped, encourage readers of all nationalities to engage in dialogue and learn from each other, while valuing and respecting their differences and adapting to the needs of people from diverse cultural, linguistic, and socio-economic situations.
Reference
Reichel, I., & Bakker, K. (2009). Global landscape of cluttering. Perspectives on Fluency and Fluency Disorders, American Speech-Language-Hearing Association, 19, 62-66.
Submitted: March 15, 2010
