DAVS

Prevention of Stuttering in Denmark
dansk udgave by Per Fabæch Knudsen, M.A., Director

Presentation at the 4th World Congress for People Who Stutter, Linköping, Sweden, August 1995
 

My presentation I will say something about how the attitude to stuttering in pre-school
children has changed in Denmark the last 6-8 years. I will tell about what has happen to change the attitude, and how the early intervention has been organized in Denmark.

But before I tell you this I will present myself. My name is Per Knudsen, I'm a psychologist, I've been active in the Stuttering Association in Denmark for many years, and now I'm the director of the Stuttering Information Center of Denmark. I come back to the centre later on in my presentation.

I began to stutter when I was 3 years old. If you ask my parents, they tell you, that I began to stutter because I fell down from a window-sill and got a potted plant in my head. I myself think the causes of stuttering are much more complex - but that's another story.

There was nothing done about my stuttering when I was a little child. The generel comprehension at that time was, that the stuttering would disappear by itself before I should begin in school.

When I was 6 years old and the time for beginning in school came nearer, my parents contacted the institute for speech training and asked what to do about my stuttering. They were told there would be a speech therapist, who would take care of the problem, when I began in school.

In Denmark you normally begin the first class of school when you are about seven. But due to a test of my school readiness when I was six, my parents was told to let me wait one year more, so I could be more school ready. Because school in Denmark start in August and I have birthday in October it meant, that I was almost 8 years old, when I began the school. At that time I had stuttered for about 4-5 years and was what we today call "an old stutterer".

Shortly after I began in school I was send to the speech therapist. She was a nice lady, and I came there one time a week and did my breathing excercises, voicing excercises, relaxing excercises - and when I was a little older, I had to read aloud some small texts she chose for me.

The problem with the treatment was - when I look back - that we did not talk about stuttering. My feelings and experiences about stuttering were not on the agenda of the treatment. In fact we did not talk much about stuttering at all the speech therapist and I. It seemed like the stuttering did not excist for me in these lessons - or at least that stuttering was "not my business". On the other hand, I knew that the speech therapist talked with my parents and my teacher about my stuttering. And of course the speech therapist, the teacher and my parents knew, that I knew, that I was in therapy because of my stuttering.

So my stuttering was a taboo. There was a conspiracy of silence around my stuttering - a conspiracy I participated in myself. I never talked with anybody about my stuttering. In retaliation I tried to do anything to avoid stuttering. It was difficult at many occasions, but in some I succeded in avoiding stuttering. Some of the consious strategies I used to avoid stuttering was to put a sound in front of the word I knew I couldn't say without stuttering, e.g. my name. It meant I presented myself as æh-Per instead of Per. I sometime chose to play the clown especially when we got a substitute teacher, sometime I changed my voice so I spoke a dialect - or avoided situations I knew I couldn't master without stuttering.

These strategies are not special, but undoubtedly very common for stutterers of my age. The result was, that I at many occasions could be together with other people without to stutter, but I could never be quite sure when I was able to avoid stuttering and when I was not. The result was, that I limited my self. My lifespace became very narrow. It was my stuttering which chose for me - and the choses became fewer and fewer. When I was 27 I took myself by the scruff of the neck and entered the institute for speech training and began, among others, in a self-therapy group. Later on I had both speech therapi and psychotherapi, and today I think I have a relatively relaxed view on my stuttering - even if I'm not at all stutter-free.

In the meantime I had begun to study psychology at University of Copenhagen, and in my trainee period I among others was together with a speech therapist and watched him while he had therapy with a 10-year old boy.

It gave me quite a turn. To see a boy have the same kind of therapy I had 20 years before was shocking. Had nothing happened in the last 20 years. Oh rubbish!, couldn't the speech therapist see that the therapy he offered didn't meet the boys' needs? The boy was just as distressed after the therapy as before - maybe even worse, because one more hope of relief from stuttering had failed.

I have said all these about my own stuttering background and my experience with the 10-year old boy, who stuttered, 20 years later, partly to tell you what have forced me to work with stuttering, and partly to tell how we have viewed stuttering in the 41 years I have lived. The generel comprehension has been that we shouldn't do anything but avoiding making the child aware of his own stuttering. The stuttering then would maybe disappear by itself, they thought. The experience was, that it would do so in the most cases. But the problem was the children who continued to stutter - they were very badly helped by this attitude.

In 1980 the care of handicapped persons in Denmark was decentralized to the counties and the municipalities. For the area of stuttering it meant, that the pedagogical psychological services in the school-system principially should take care of children from zero to 18 year, who stutter, while the institutes for speech training in the counties should take care of growned up and the children, the municipalities couldn't manage.

In reality the speech therapists in the school-system didn't take care of the preschool children. They had learned - and the generel comprehension was - that they should wait and see until the child began in school. And when the child then began in school, the therapy often was as the therapy I had in my childhood, and as I saw repeated 20 years later, when I had my trainee period: it was more or less useless for the person who stutter.

The generel attitude among speech therapists at that time was, then, to wait and see. This attitude was also widespread among preschool teachers, teachers, physicians and others who had a professionel contact with children. The attitude of course was based upon the knowledge they had - and the knowledge they had was a distorted construction of the diagnosogene theory by Wendell Johnson. Shortly, his theory stated, that stuttering grow out of the normal disfluencies, as the most children express during their childhood, because their disfluencies was labelled "stuttering" by the significant persons in the childs environment. The construction was distorted because Wendell Johnson himself differentiated between early symptoms of stuttering and the normal disfluencies. And as far as I know he himself treated preschool children.

In 1986 I participated in a conference about stuttering and children in Denmark. About 35 speech therapists and psychologists from all over the country attended the conference which was organized by the Ministery of Education. The participants was invited because of their previous work with stuttering. The conference discussed early intervention, but early intervention was understood in different ways. Some understood early intervention as an intervention with children aged 3-4, while the most of the participants saw early intervention as an intervention done with children aged 5-7 or older. And early intervention was mostly a talk with the parents, unusually it was direct treatment of the child. In fact it was only a very few speech therapists in Denmark at that time who offered early intervention for the very young children aged 2-4.

The conference was the beginning of much thinking for me. It was logic, that an intervention, which early took hold of the inappropriate reactions to the little child, who stutter, would change the situation for the child and the development of the stuttering -and maybe it could prevent a proper serious stuttering-development. But the question was, how could we begin to change the widespread attitude of waiting and seeing? Typically, Danish speech therapists work with many different speech and language problems, and stuttering is only a little part of their work. It's very common, that the speech therapists in the school-system see a very few stutterers a year - so few, that they often can't develop experiences in stuttering therapy. And the most speech therapists are very busy in their daily work, so the changes of the attitude couldn't be expected from there. Another problem is, that Danish speech therapists very seldom write about their work - and very unusually the writings reach others than the readers of the speech therapists journal. I think, the times where speech therapists wrote about early intervention for small children in these years can be counted in one hand - and the articles was probably seen as some speciel privileged speech therapists speciel qualifications for working with the small children - and certainly not some descriptions, which could be generalized and used by others than the few.

It struck me, that I maybe could do something about this.

At the same time I was a member of the Board of the Stuttering Association of Denmark. I talked a lot with a friend here, who was employed on a fixed duration contract at the University of Aalborg. He was a stutterer himself and had a son, who also stuttered. He had read an article in an American Journal about early intervention with preschool stutterers, and he was almost finishing his job at the University. He had some experiences with external projects at the University and knew how we could make the University interested in a project. So we got the idea, that we would do a project about prevention and treatment of stuttering in preschool children. The financing should come from private funds, and the purpose of the project should be to collect, adapt and pass on knowledge of prevention and treatment of stuttering in preschool children. The idea was to collect all the accessible knowledge, adapt it for Danish conditions and spread out the knowledge to speech therapists, preschool teachers, physicians, parents etc.

It was in 1987. We applied for money from 50-60 funds - and got one refusal after the other. At the same time I was in the end of my study as a psychologist, and I had planned to make a journey - away from my daily life. It was a big challenge for me which I would carry out. My girlfriend would travel too, and she wanted to go to Japan, while I wanted to go to USA. In that situation I got another good idea. I could combine my trip to USA with visits to university clinics, where they offer early intervention for stuttering. Through a friend in the Danish Association for Stutterers I got the programme for the following ASHA-convention, and found the abstracts about prevention and treatment of stuttering in preschool children. Through the library of the American Embassy in Copenhagen I got the addresses of the university clinics. I wrote to them and asked if I might come and visit their clinics, and I got many positive answers in return.

I visited 6 university clinics in the spring of 1988 and got many informations and a lot of material to take with me home. Just before Christmas in 1988 we got the money for the running of the project. Shortly after we also got money for the materials we had planned to make as a result of the project. The project itself was initiated March 1, 1989 and lasted for 20 months.

The results of the project became utilized in several different media. We wrote a book called "Prevention of Stuttering". It was written for speechtherapists and psychologists. We wrote a booklet called "When the little child stutter". It was written for parents and preschool teachers. We made a leaflet also meant for parents. It was spread out through libraries, the school-system etc. We made a video called "Wanting to talk but afraid of Stuttering". It was aslo done for parents and preschool children, but it showed to be very useful for speech therapists too. The database we made with the bibliografichal data and the brief abstracts of what we have read was published too. It has been very useful for students. Finally we made several workshops for both speech therapists and psychologists and for preschool teachers, nursery nurses etc.

If one want to settle up the project, the conclusion must be, that it have had a big influence for the changed attitude of what to do when a preschool child begins to stutter in Denmark. You can also say, that we were lucky, that the project was initiated at a point where concepts as "early intervention" and "prevention" was discussed - not only in connection with stuttering but also with dyxlexia and other problems small children can have. We touched some tendencies, and the project then enhanced and putted speed on these tendencies. However, we have got the response, that if we hadn't done the project, the attitude and the comprehension for the importance of early intervention wouldn't have been so widespread among speech therapists and primary helpers as it is today.

Anyway, but what happened? As early as in 1988 Woody Starkweather was in Denmark and gave a workshop for about 30 Danish speech therapists and psychologists. It was of great importance for the work in our project that a capacity as Woody Starkweather could deliver the message about early intervention in a very qualified way to some of the speech therapists and psychologists, who were most involved in the work with stuttering in Denmark. Later on other americans like Ed Conture and Ehud Yairi were in Denmark to give workshops and tell about their work and experiences, and Woody Starkweather was in Denmark to give workshops two times more in the following years. At the same time Lennart Larsson, a Swedish speech therapist, gave a lot of workshops in Denmark. His "down to the earth" presentations of his work gave the speech therapists the inclination for trying to work with the small children themselves. Totally between 500 and 600 speech therapists and psychologists attanded our workshops during the period of the project.

The workshops was together with the book, we wrote, the professional element of the project. It was important for us to "catch" so many professionals as possible, offer them a basis knowledge through the workshops, we organized, and offer the possibility of maintaining this basis knowledge through the book, we wrote.

An equal important part of the project was the dissemination of knowledge to preschool teachers, nursery nurses, parents and others. The idea was that the collected and adapted knowledge should be passed on partly through the booklet and the video, we made, partly through the local speech therapists and psychologists, who have attended the professional workshops, and partly through 1-day courses for preschool teachers and nursery nurses. During the period more than 500 preschool teachers and nursery nurses from all parts of Denmark attended the 1-day courses.

As the project was carried out and the materials was used, especially the weekly and the monthly magazines became very interested in the message of the project. We made a lot of interviews, and the articles - which mostly were written in an easy understandig language - had a great influence on the dissemination of the new comprehension and attitudes toward stuttering in preschool children to the public in general.
 

We didn't recommend any certain strategies for the early intervention. We wrote about the importance of early intervention, and we presented the knowledge and experiences of different researchers and therapists - and then it was up to the speech therapist and the psychologist him- or herself to find out what part of the ideas and knowledge he or she could use. It means that the early intervention has many forms in Denmark, which, if it has to be described in generel, consist of both direct and indirect therapy with the child and/or his family. The indirect therapy is guidance and sometimes counseling of the parents. Sometimes the childs preschool teacher and other important adults are guided too. The direct therapy with the children is often done by modelling slow, easy speech and easy repetitions during the therapists play with the child. An important part of the direct therapy is to offer a room or space, where stuttering is allowed. Both the direct and the indirect therapy can be carried out in a group or as individuel therapy. In some very few instances a speech therapist can work directly with the childs stuttering symptoms. Generelly is it so, that the younger the child is, the more indirect is the therapy. When the child is a little older, direct treatment is used more often, but it is very unusually, that direct work with the stuttering symptoms takes place.
 

When the end of the project period came closer, we began to think about what should happen in the future. The project had initiated a proces, but who should be responsible for the maintaining and the further development of the knowledge of stuttering in preschool children, when the project was finished? In Denmark - as I had said before - it is so, that children, who stutter, is treated by speech therapists from the school-system, and the growned up are treated in institutes for speech training. These places offer guidance, counseling and therapy, but no research. None of these institutions do research or have the responsibility for develop (or collect) new knowledge. The education as speech therapist takes place at The Royal Danish School for Educational Studies and at the University of Copenhagen. There would have been a possibility for doing research at the University of Copenhagen, but the education here is relatively new and the lessons in stuttering here are offered by external teachers who only are employed for the few hours, the students learn about stuttering. It means there are no University possition in stuttering in Denmark!

So again we had to find an alternative solution - alternative compared to the established system. We got the idea of establishing a centre called "The Center for Research into Stuttering". The purpose for the center should be to collect, adapt, develop, do research in and pass on knowledge about stuttering. We sat up a working group, established a Board of the centre and applied funds and ministeries for money - and again we got one refusal after the other.

At the same time there was a discussion in Denmark about establishing information- or ressource-centres inside the fields of the handicaps as a consequence of the decentralizing of the care of handicapped people in the beginning of the 1980'ies. The experience had been that the expertise in different fields of disability was dispersed to the local institutions, where there usually was no professionnal enviroment in that particular disability, where discussion, exchange of information and development of knowledge could take place. The discussion about these information-centres had taken place over some years, and after the application for money to the Ministery of Education with following meetings, the field of stuttering was taken into account as one of the areas for a centre. An contributory factor for this was that one of the employed consultants in the Ministery of Education was very interested in the field of stuttering. Fortunately he was the Ministery of Educations representative in the working group, there was established by the Ministery of Education, the Ministery of Social Affairs, the Association of County Councils in Denmark and the Danish Counsil of Organizations of Disabled People for discussing the establishing of information-centres. The problem for us was the name "the Center for Research into Stuttering", because research with this name was in focus. The Board of the centre then, decided to change the name to "The Stuttering Information Center of Denmark" to signalize, that the center had planned to do more than research.

By the end of 1993 it was decided, that the Stuttering Information Center of Denmark would be established as one of the 11 information-centres inside the field of handicaps. The centres are established for a period of 3 years. We get the money from the Ministery of Social Affairs for the running of the centre, and we can apply for more money for specific projects and conferences. The center was established January 1, 1994, so we have been existing for 11/2 year now. We still have 11/2 year back of the trial period, after which the working group will find out if the information-centres shall go on in the same way, go on in another way or be closed. Undoubtedly, I think the idea with the information-centres go on. The question is if it will be with the same kind of organization as it is now, or if more centres are putted together into a bigger centre. I can tell you more about that in 11/2 year.

The Stuttering Information Center of Denmark resides at the Royal Danish School for Educational Studies in Copenhagen. The centre has three individuals employed: a secretary, a speechtherapist and me, who are the director of the centre. Beyond this, professionals working in shorttermed projects can be employed for some months. In 1994 we had three project-workers employed, and it's the same for 1995.

The purpose of the centre is to collect, adapt, develop and - especially - pass on information about stuttering and its consequences. The target groups are speech therapists and psychologists, who works with stuttering, stutterers and their relations, preschool teachers, teachers and others who professionally gets in contact with people, who stutter.

The Information Centre has chosen 3 spheres of effort which it will give priority to. The first sphere is the prevention and treatment of stuttering in preschool children, where the centre will try to maintain and develop the results we have gained until now. The second sphere is school children, which in the later years have had a little low priority in Denmark. The third is stuttering and employment, where we partly will expose the problems stutterers find in getting a job, and partly try to better the conditions for stutterers through information to employers, unions etc.

Because my presentation mostly is about prevention of stuttering, I in the following will tell a little more about the activities the centre does - or have planned to do - about prevention and treatment of stuttering in preschool children.

The Information Centre is at the disposal for all speech therapists and psychologists, who works with children who stutter. They can call us and get information about specific problems, references for litterature about speciel subjects, information about videoes about stuttering and so on. Besides this, many parents call us and ask for information of what to do, when they have a child who stutter.We can't ourselves offer treatment, but refer to the speech therapists in the family's municipality. If this for different reasons isn't possible, we inform about other possibilities, e.g. help at the regional institute for speech training or other institutes. We can also tell about an very active parent group inside the Danish Information for Stutterers, whom they can contact, and talk with parents who are in the same situations as they are themselves.

Because we have experienced that many of the local speech therapists still is very unsecure in many situations of how they shall help a little child who stutter and his parents, we have established a network of trained speech therapists and psychologists, who will be able to guide and help or supervise the local speech therapists, who want this help. The purpose of the network is mainly to secure, that children who stutter and their parents can get a qualified help no matter where they live in Denmark - and still very close to the childs homeenvironment. But the purpose is also to spread out the knowledge about stuttering and treatment of stuttering to more speech therapists and psychologists - and then secure that knowledge about stuttering and treatment wont disappear from the local institutions even if one stuttering expert moves to another part of the country or to an another institution. You can say it's a kind of covered further-education and a qualification of the local speech therapists, we do with this kind of network.

The network has just been established, so we don't know yet what effect it will have. We will evaluate the network in spring 1996, and thereafter we'll find out if we shall continue the network or find other ways.

In August we begin a project about dissemination of knowledge to professionals who often are involved in the primary care for children in Denmark: nursery nurses and preschool teachers. The idea with this project is to try to develop a model for how the dissemination of knowledge of early intervention can take place in the municipalities. The speech therapists here - as I said earlier - have the task to take care of stuttering in children from zero to 18 year, and with it also prevention of stuttering by giving information to these professional groups. To make it easier for the local speech therapists we will develop this model which they can use, if they like.

Finally we're planning to write an article to the journal for physicians in denmarkto tell them about the importance of early intervention. It is very often so, that parents ask the physician for an advise. The problems with this is that in generel the physicians don't know anything about stuttering, but maybe for many years ago have heard something about that one should wait and see if a child has begun to stutter - and tells the parents this. Many people see their physician as an autority, and listen more to him than e.g. an preschool teacher or an speech therapist. Therefore it's very important to deliver the message about early intervention to the physicians.
 

As I have mentioned before, there is a parent group in the Danish Association for Stutterers. It was started a couple a years ago, and since then it has become bigger and more powerful. The parent group has made a little leaflet about themselves, where there among others are names and phonenumbers for contact persons. The parent group - moreover, in cooperation with the Stuttering Information Center of Denmark - arrange information meetings around in Denmark for parents, preschool teachers, teachers and others. Finally the parent group arrange a weekend camp for children, who stutter, and their parents and brothers and sisters one time a year. The second camp will take place in August in Samsø, which is a small island not far away from Århus.
 

An investigation the Stuttering Information Center of Denmark did autumn 1994 showed that much have happened inside the field of stuttering in Denmark the last few years. Today the generel comprehension is, that early intervention is very important. Many speech therapists around in Denmark are capable stuttering therapists, but still there are some speech therapists who feel insecure in the work with children who stutter. This is especially so for speech therapists employed in the small municipalities, where they don't see many children, who stutter.

The investigation also showed, that the attitude among the public in generel has changed too. The speech therapists receive many enquiries from parents, preschool teachers and nursery nurses about children, who maybe have begun to stutter. This has as a consequence, that there today apparently are more children who stutter than before. I don't think this is true, I think the reason for this is, that today we have something to offer the child and the parents - which we didn't have before. So of course more seeks help now than they did before.
 

I have now talked a long time about what have been done for prevention of stuttering in Denmark. Or rather: I have talked about the historical and the organizatorical things about prevention of stuttering in Denmark. One could ask then: what interest but a common polite interest can you have in listening to what I have told? Isn't it something which is so special for Denmark, that the only interest for others is an academic one?

Of course, I think it's possible to conclude some generel views of our experiences, which other can profit from. Therefore, I finally in my presentation will amplify this generel views.

The first is, that research and experiences from many speech therapists around in the States and in Europe confirm the logic comprehension, that it's better to prevent than to treat. Both research and experiences shows that the need of intervention in small children is much less than in older children and adults.

The second is, that it is very important that information about eaely intervention to and further education of the speech therapists are followed by - or rather - goes hand in hand with information about early intervention to other professionals, who takes care of small children, and to the parents.

The third is, that it ain't enough with a single or a few campaigns. The work with changing attitudes takes time, and the proces is a running proces, where you have to work constantly to spread out the information to all groups of professionals who are involved in the care of the child, who stutter, and the parents.

The fourth and last view is, that stuttering associations has a bounden duty to take part of the dissemination of the knowledge, we today have about the importance of early intervention. And if nobody else does it, the stuttering associations must begin the proces and constantly try to get the professionals to understand the importance of early intervention. Among others the German and the British stuttering associations have done a good work for early intervention in Germany and Great Britain, and just recently I have experienced, that the National Stuttering Project has declared 1996 as "the year of the child who stutters".
 

Finally, I'll thank you for listening to my presentation. I hope the prevention of stuttering will bemore common in the future, so more children, who begin to stutter, can avoid some of the bad experiences, the most stutterers of my generation have had. And I'm sure, if the prevention of stuttering will be widespread, we in the future will see less people who stutter. The main goals for the stuttering associations may be - as I see it - to make themselves unnecessary - and could we fine a better way to make the stuttering associations unnecessary than work for prevention of stuttering in childhood so no children grow up with stuttering? 


© Dansk Videnscenter for Stammen, email: davs@dlh.dk