Having been misdiagnosed for years with a stammer, Peter Kissagizlis gives an insight into the rare communication disorder of cluttering.
Have you ever felt isolated, excluded, frustrated that people do not understand what you are saying, misunderstood and misdiagnosed? Is it okay to be different?
That's how I have felt for many years. I had problems at school, being ridiculed by the teachers and taunted by some fellow pupils, just because I had trouble with communication. It was first suggested that I had a stammer, but then was told I did not stammer.
My speech is fast. It affects my thoughts, my work, reading and writing, and the whole process is cluttered. This is why I suppose the term cluttering was formed. I was diagnosed as a clutterer in my later life because no one knew the correct definition for my communication problems. A stammer can be quickly defined but I was different. Not only did it affect my speech; it also affected my thought patterns, writing, typing, and conversation skills. I was always on the go, doing many things at once, but seemed unable to persist at one thing for a long period without extreme effort. Many symptoms of cluttering share similar traits to that of attention hyperactivity disorder (ADD).
I find it hard to talk to strangers. I need to 'attach' my conversation to a particular topic because I cannot ad-lib or engage in small talk. If someone wants to listen to something I know about, then it is easier for me.
Some years ago after finding that my speech had blighted my working life as well as my education, I asked for another referral to a speech and language therapist. I thought this would help me to address my speech and communication problems, but when I finally visited the therapist and discussed my problems, she said I was wasting her time and there was nothing wrong with my speech or communication skills. Needless to say, this pulled me back even further and I thought that I was never going to be able to have some sort of normality that many people enjoy.
Earlier this year I attended the first ever conference on cluttering, held in Bulgaria. The conference was well attended by many professionals from around the world. It was wonderful to see so many people doing something about a problem that is little understood and that I and others have had to contend with for most of our lives without much help.
I was excited that so many people understood that there was a problem called cluttering, but of the many people there, it was only a few who had dealt with clutterers. Even then it was difficult to diagnose because of differing criteria. Not many people would be defined as a 'pure' clutterer but in my case, as diagnosed by several therapists at the event, it was deemed that I was in fact a pure clutterer. When I listened to many people discuss cluttering while having little knowledge of the true aspects of it, I felt it prudent to speak out about my communication disorder. I explained to people just what a clutter is and how it has affected my life since childhood. I found it very difficult to speak while sitting in the audience, but soon felt that I had provided a great service in providing such information, as it was received with applause.
I agreed to be recorded on video and audio so that my speech could be viewed by speech and language trainees worldwide. There were many different interpretations of cluttering and how it affected a person's life, and many ways that people could address the problem.
Joseph Dewey from the USA was hoping to come to the conference, but he did make a very informative video of himself of which we were able to watch for about half an hour. His testimony could read as though it was mine, as we have so much in common. I have kept in contact with Joe since joining his listserve yahoo group in 2003 (see address at the end of the article). We have chatted many times at length and also managed to speak through the internet.
1. An article I have written for our Hull Stammer groups website: www.abc-sites.co.uk/speakingout/Cluttering.htm
4. Hull & East Yorkshire Stammerers self help group: www.speakingout.org.uk
What is cluttering?
Cluttering is defined as a communication disorder characterised by a rapid rate of speech that may come out too fast without proper pronunciation and be somewhat erratic. Cluttered thoughts can make it difficult to express yourself clearly.
Speech can become unintelligible. Phrase patterns can be uneven, some of the phrases or sentences can become interlaced with different sounds, and the context may be difficult to understand. People who clutter may sound as though they are drunk. Their speech can be slurred and they may find it difficult to respond easily to people's comments.
Sometimes the speaker is unaware that their speech is disfluent at all; others are aware but seem unable to do anything about it. Many people wrongfully categorize clutterers with stammerers. Although this is incorrect, there are similarities.
From the Autumn 2007 issue of 'Speaking Out', page 17