Cluttering 
 a rare communication disorder 
with 
speech and language disfluency 
 
The First Worlds Congress was held in Bulgaria 
in May 2007 
 
And now a new web site hosted by the newly formed International 
Cluttering Association:   
http://www.associations.missouristate.edu/ICA/ 
 
Work on cluttering has been going on since the mid 1980's by some prominent speech 
and language pathologists, including Kenneth St Louis and Florence Myers 

__________________________

Historically, cluttering was widely recognized, particularly in Europe. This was especially true in Czechoslovakia and other places in Eastern Europe. It was decided to hold the first ever international conference in a place where history of the disorder is especially rich.

As for publicising more about cluttering, the conference will no doubt suggest important efforts that could be undertaken on several levels. Already, there has been interest in forming an organization devoted to cluttering world-wide. The first meeting of this organization ("International Cluttering Association," possibly) will be at the conference………….. Kathy Scaler Scott, who is a doctoral student in speech-language pathology in the USA, has a singular interest in cluttering has agreed to serve as the first coordinator of the new organization.

………. Peter Kissagizlis from the UK gave a talk at this Worlds first Congress on Cluttering, Peter is the secretary (volunteer) of the Hull & East Yorkshire Stammerers self help and support group (www.speakingout.org.uk), this group was set up in 1998 to offer help and support to people with speech articulation problems such as stammering (Stuttering) and Cluttering.

It is the right time to raise the awareness of this debilitating speech condition that has left people stigmatised by the fact that they are difficult to understand.

Although Stammering is widely known Cluttering is not very well understood as not as many people are affected by this disorder. Whilst stammering affects the way a person speaks, by blocking, by repetition, by hesitation etc…………………
………………….. clutterers tend to talk too fast with a disorganized speech pattern, this affects the articulation of speech through thought, phraseology and they sometimes sound slurred, they speak at an excessive rate which is hard to understand, often they do not know how to say what they want to say. Many clutterers find it hard to slow their speech, and if an attempt is made to do this, the resulting speech can sound like a robot.

The problems of a clutterer are manifold and can migrate to illegible writing, typing, working, meeting people, shyness, unable to speak at all at times, unable to put their thoughts into words, constructing letters and emails, some clutterers are also introverts, possibly because of their speech problem.

In terminology, stammerimg is a speech problem, cluttering in effect seems to be a language problem.

The problem can become unintelligible, the phrase pattern is not even and some of the phrases or sentences can become interlaced with different sounds, and the context may be difficult to understand. A person who clutters may sound as though they are drunk, their speech can be slurred and find it difficult to respond easily to peoples comments.

To make matters worse the clutterer does not always know that they are having a problem with their speech, they speak as they always have and in some cases unless someone explains that they have a problem, think they are talking intelligibly, they themselves are not always aware of the problems.

It is difficult for a clutterer to phrase sentences correctly, it also possible that they are not always good at writing and spelling, they often make mistakes and their handwriting can be unintelligible. Sometimes it does not appear clear as to what the person wants to say and quite often their comments can be misunderstood.

A clutter finds it very difficult to plan their speech, they can have short attention spans and are somewhat clumsy in getting their point across, whilst a fluent person is able to plan their speech correctly and to form some sort of regular context of their sentences, it is difficult for a clutterer to do this, the pure fact of speaking can become very difficult and an arduous task, if the problem of speaking combines with any other throat or respiratory problems, the whole task of speaking can become painful.

Clutterers can sound as though they are talking whilst quite stressed, in fact some clutterers do seem to live with more stress than others and can have neurotic like symptoms, they live in a hurried world and are generally trying to do too much, some people think that clutterers and Stammerers alike lack intelligence, however it is known that is not the case, I can testify to that and sometimes the reverse is the case, were a clutterer is actually very intelligent.

Cluttering has been a problem for many people for many years, it is not until the late 80's or early 90's that it was recognised and accepted as an actual speaking problem, however the problem clutterers have had back in their school days have been horrendous, just as people would take the mickey out of Stammerers they would also do the same for clutterers because they were similar and a stammerer had the same problems as a clutterer had, that is in trying to make themselves understood correctly, some may perceive this as a learning difficulty when in fact it is not, but try telling another child that the person who is talking "funny" is normal and they may well laugh.

Some may laugh at the antics that we clutterers come up with, it is very difficult to talk slow, or should I say it is very difficult to talk slowly without sounding like a robot, a clutterer can speak clearly at times if an effort is made but the context is: ....how ... are ..... you ....doing ? ...... it ....... is ....... nice ...... to ..... see ..... you! the person to whom they are talking to can get a little frustrated and can easily walk away from the person, just like a stammerer has to cope with.

I can vouch for other problems, when typing it is quite common to type the letter twice, or when typing the letter twice the letter that is struck does not show, so the words look strange, sometimes the typos are bad and the wodrs lok strangs like tihs, evry time I type out anything at all, I have to proof read it, if not I wud hav a stareng colectiion of wodrs to lok at. This is how it is with the speech, I know, I have had problems most of my life, it has affected my education and employment prospects. When in employment and I applied for promotion I would be told, "sorry but we do not think that you could clearly converse with the customers" OK, we may not sound as fluent as some people are but I think I would rather talk to a clutter or stammerer that knew their job than to a person with fluent speech that does not know much at all.

I find it extremely difficult to initiate a conversation, unless I have a lead factor, I find it as difficult to keep a conversation going at times unless I have a prompt, I forget words, I forget what I was going to say, I forget the question sometimes of what I am asked, it can be very frustrating when I go to meetings and I need to make a comment, by the time I have managed to get the words out, I can have lost the thread to the item in hand, it is so frustrating to sit there and wait until you find a "slot" so that you can initiate your comments when someone else more fluent starts speaking and your chance has gone, it is easier talking in a one to one situation.

Another difficulty is when people try to respond to a clutterer or stammerer, often they do not give the person time to explain themselves and both parties can get frustrated and embarrassed to the extent that both may wish that they were somewhere else. Time MUST be given to a person who has speech problems, whether they have a stammer, clutter or some other problems such as dysphasia or dispraxia, even some people who have strokes end up with disfluent speech. One must give time for the person to speak, it is a good idea for the person with the speech problem to explain that they have a disfluency and ask the listener to bear with them, this is one of the things I do now and it sure does help, it helps to calm both parties down and to help to stop any frustration or embarrassment.

How is cluttering diagnosed? this has to be done obviously by a qualified speech and language therapist, it may take one, two or three sessions to correctly diagnose a clutter rather than a stammer, I initially requested help from my GP, however some GP's were unwilling to accept that I had a problem, but I did get my first appointment after some pressure, this consisted of weekly sessions at the local hospital, I would talk aloud from a paragraph, which I find extremely hard to do, the therapist would folow this speech with a tape recorder and a frequency machine, this told her that my speech had a very high sound frequency and the rate was too fast and erratic.......................................................... eventually after trying most therapies including an "Edinburgh Masker" it was deemed there was no more help that I could have...............................

.................................After some years when employment interviews and applications for employment were proving difficult, I asked my GP for a referral of which he did, however, the speech therapist was a young girl straight out of university and she stated that I don't have a speech problem and I should not be wasting her time ........................ this is when I felt most on my own. I walked out of the treatment room to go and try to help myself........................

....................In 1998 I was reading a letter in the local Council bulletin about a stammerer who wanted to form a group to help each other, it is then that I replied and finally met Terry Turner, Bob Hartley and Rob Hilton and we formed the "Hull & East Yorkshire Stammerers Self Help Group" we have come a long way since then, our group has grown and it has become one of the most pro-active Stammerers self help groups in the UK, unfortunately we have not had many inquires from other clutterers, all the other members stammer, but by using different techniques we have all managed to achieve some sort of improvement. The main thing is we have achieved something, we have built our confidence, increased our fluency rate and helped to provide support for people, like us, who needs it!

More information on Cluttering defined

If you have a clutter, we would like to hear from you!

International Cluttering Association: http://www.associations.missouristate.edu/ICA/

Cluttering listserve group: http://groups.yahoo.com/group/cluttering

Would you like to be more involved with support for clutterers in the UK or adjacent areas? if so please contact Peter

© Peter Kissagizlis, June 2000