Freya's letter on the background of an expert system

Free Freya

Part 3. A year of education in the psychiatric care services

Eve Mandre

with a Preface by Bodil Jönsson


Translation: Anna-Karin Batcheller Layout: Anu Uus


Table of Contents

Preface
Summary
An Insight into Freya's Life
A Long Process
Understanding Autism
Special Education and Special Technology
Bodil Jönsson and Eve Mandre
A Retrospect
Freya - a patient pursuant to the Act on the Provision of Closed Psychiatric Care or a person living on her own under the Act concerning Support and Service for Persons with Certain Functional Impairments?
Freya's Future

Free Freya, Part 1. Before Becoming Computerized
Free Freya, Part 2. Explosive Development


 

Preface

Bodil Jönsson

Over a period of almost two years I have allowed myself the pleasure of devoting close to 100 working days to Freya, the activities at Villa 39, and my collaboration with Eve Mandre. It has been my task to analyze the situation, to try to understand, to question what has been done, and to contribute ideas and solutions from the intersection of education and technology.


A Strange Beginning

The first time I visited Villa 39, on December 21, 1995, I was about as indifferent to Freya's case as was everybody else in the community. With the difference that I actually took the train out to Älvsjö, walked into Villa 39, and was, in fact prepared to do something. I met the woman who has been labeled "the most dangerous woman in Sweden" even though she has neither killed nor robbed anyone. So why was she considered so dangerous? I was introduced to a small and slender woman. We began walking back and forth, each on our own side of a fence. We were able to hold a conversation, she showed an interest in what I was saying and immediately asked for an explanation if I said something she did not understand. It was not really that Freya seemed odd: the whole situation did. It is impossible for someone who did not visit Villa 39 before the summer of 1996 to imagine how unspeakably barren and depressing her environment was (and still is, although things have improved somewhat). The bunker, the cell, and the exercise yard were characterized by grayness, gloominess, shabbiness, and a lack of everything that can make life worth living. All this was reflected in the staff, who at the same time very much contributed to the situation by their despondency.

The physician responsible, Dr Sven Randén, engaged me in conversation half an hour after my arrival. He made it very plain that he considered Freya's autism diagnosis to be irrelevant and that it was obvious that she had suffered a childhood trauma. Why did he tell me this - after 30 minutes? I did not understand anything. All I could do was to answer him by saying: "Whatever the correct diagnosis, much could be done to improve Freya's life at Villa 39." And Sven Randén agreed that it might be interesting to see what difference a computer, for example, would make. But there were no funds available (even though Freya's care was very costly): I would have to find the money myself.

Introducing a Computer Straight into an Environment Fixated on Childhood Trauma

So I did. That's right: I actually did. Because I had to. At first, it was not really about research; it was about the fact that you cannot let a person live like that. Not in 1995, not without at least trying to do something. You cannot know until you have tried. And it seemed to me that there was a remarkable lack of variety in the treatments which had been tried with Freya. It was as if everyone was stuck in the belief in a childhood trauma and in completely absurd attempts at bringing it to the surface. How come nobody questioned the basis for this treatment?

In Free Freya parts 1 and 2, Eve Mandre and I described what happened before and after the introduction of a computer into Freya's life. The present report, Free Freya part 3, is the last installment in a trilogy where the first report by it very existence became the beginning of Freya's breaking free from the psychiatric care services and where, as far as we can see, this last report represents the completion of that departure. Because we believe that very soon Freya will no longer be a charge of the psychiatric care services.

The Contents of this Report

In her report, Eve Mandre's main focus is on describing the role of education and the possibilities it affords where Freya is concerned. In this preface, I would like to contribute a research perspective which is not directly concerned with what we have achieved of a technological nature, but rather concerns my reflections from a hundred days of joy, anguish, threats, uneasiness, inspiration, weariness, and work, work, work. The technological/pedagogical concept "Ask Freya" is introduced in a chapter co-written by Eve and myself. Otherwise, this report was written entirely by Eve. I have, however, read it very carefully, commented on it, and discussed its content with Eve, and I support it fully. I would like to express my confidence in Eve's work and my admiration, not only for her expertise and creativity, but also for her endurance. She has taken on a workload that is almost impossible to cope with. Sometime in the future, the story of Eve's involvement in all this ought to be written. But right now, this is about Freya.

Documentation

One of the most remarkable aspects of Freya's diagnoses and treatments is the lack of documentation about the case. It would be rare to find a psychiatrist in Sweden who has not heard of her under her previous name: Elisabeth. And, it appears that Elisabeth, a psychiatric enigma, is widely known internationally as well. But at the same time, very little has been published about her. So what, in fact, can the psychiatrists have been discussing? On what basis? Where was the research? Where was the questioning and where was the pursuit of facts? Where did, for example, Lisbet Palmgren publish her findings?

It is gratifying to see that the Swedish Medical Society will, however belatedly, examine "the Elisabeth Case" on October 21, 1997.

In another context, I have described how the absence of documentation often is connected to a lack of theories and examples (cf. Ch. 2 in the book "Just Give Us the Tools" available at http://www.arkiv.certec.lth.se/doc/justgive/). A common way of justifying a lack of documentation is to claim that it would impinge upon the integrity of the individual. But to what extent has Freya's integrity been preserved by her not having her diagnoses and treatment and the reasons behind them documented in such a way that they can be questioned?

The most important contribution made by CERTEC at Villa 39 is not a technological one but rather the fact that, from the very first moment, we insisted on documenting what happened during the period leading up to the first introduction of a computer. That documentation was published as Free Freya part 1. Freya and her parents have read every single line of it very thoroughly. And they have looked just as carefully at the pictures. It has been widely read (to date 1200 copies have been printed), as has its sequel Free Freya part 2. It has been very important. Both to Freya's self image as well as that of her parents. And to the many other individuals who see something of themselves in some of Freya's reactions.

Demonstrably, no documentation has been openly put together with the participation of Freya and her parents prior to this. Even though we initiated the documentation process and carried out all the work ourselves, the clinic management initially seemed mostly uninterested. Once the report was finished, they objected strongly to what had been written and virulently questioned our right to publish it. They did this despite the fact that Freya and her parents supported its content.

One of the factors which have enabled this unreasonable course of events to continue for so long is the frequent use made of professional secrecy rules. The head of the supervisory activities of the National Board of Health and Welfare participated in a radio program which was one of many follow-ups to an investigative television report about the case. He claimed that the reason he was able to take part was that he had never personally handled the case. On the other hand, the administrators who had carried out the supervision were unable to take part for reasons of professional secrecy. When Freya and her parents urge openness and show it by their actions - what right does the National Board of Health and Welfare have to prefer secrecy?

Legal Perspectives

I assume not only that Freya will be discharged from the psychiatric care services, and that the Ministry of Health and Social Affairs and the National Board of Health and Welfare will be active in ensuring her discharge, but also that her case will be considered for compensation. It would be honorable for the Ministry of Justice, the Parliamentary Ombudsmen and/or the Office of the Chancellor of Justice to initiate that process. In addition, the case ought to be the subject of legal research; what is the point of a society having legal education and research if the most flagrant contemporary miscarriages of justice are not addressed and if there is no attempt to analyze how they occur? Should the Act on the Provision of Closed Psychiatric Care be applicable at all to an individual who has been diagnosed with autism and whose worst crime over her whole lifetime amounts to breaking a few windows? To my knowledge, the Sociology of Law Department at Lund University is the only law department so far to begin asking these types of questions.

There is ample documentation of how Freya's parents have tried and tried and tried to bring about more reasonable treatment of their daughter. They have written letter after letter after letter, but have always been treated more or less as cranks. It is fortunate that their petitions, and the answers they received, are still extant. These answers as well as the journal entries which have happened to come into their possession open an abyss which ordinary Swedish citizens do not want to believe exists in the care services or in society at large.

Emil Weiss is reading Heilpädagogik by Hans Asperger

Emil Weiss is reading "Heilpädagogik" by Hans Asperger

Emil Weiss, Freya's father, has Asperger's book from 1943 in his possession. His underlinings and margin notes indicate that he has always been on the right track concerning Freya's diagnosis. However, the psychiatric care services, and the way in which the Act on the Provision of Closed Psychiatric Care has been applied, have made it completely impossible for Freya's parents to put the situation right. Sometimes, even for long periods, they were not allowed to contact their daughter. In addition to Freya's right to compensation, the right of her parents to at least symbolic compensation must be considered.

In Heilpädagogik there are many words underlined by Emil Weiss

In "Heilpädagogik" there are many words underlined by Emil Weiss


Freya and Her Names

Freya has so many names. The reason for this is not really that we have many names for those we love", but that she wanted to protect herself by changing her name.

Originally, her name was
Elisabeth Weiss.

At the end of the seventies, when there was a great deal written about her in the newspapers, she changed her name to
Stefania Weiss
and she goes by the name of Steffi.

When Eve Mandre and I were working on introducing a computer into Freya's life and on gathering documentation about her, there was one rule which could never be broken: nothing was to be done which Freya did not want. We suggested that because of her previous bad experience she might not want to be talked about under her own name (Stefania). Perhaps she wanted a pseudonym? Among several suggestions, she chose
Freya.

In Free Freya part 1, the clinic where she lives was not named either. But when we wrote Free Freya part 2, both Freya and her parents wanted the clinic, Villa 39 at Långbro, to be named. However, they did not want her real name, Stefania, to be mentioned. That would have to wait until Steffi had finally broken free from Villa 39.

We are not quite there yet, but Freya and her parents think the time has come to write not just Freya but Steffi and Stefania as well. I believe that this is great progress, since it means that the sense of shame and uniqueness is fading somewhat and is being replaced by glimpses of rehabilitation.

The National Board of Health and Welfare

Obviously, in a civilized society, nobody should have to suffer what Freya has gone through. A supervisory authority, the National Board of Health and Welfare, has been put in place to ensure that situations of this nature are avoided. In my opinion, it is absolutely necessary for the National Board of Health and Welfare to take on a much more active role than has been the case so far. The only defense of their actions that I have heard to date was put forward by Olof Edhag on the radio show "Studio 1" recently. He explicitly said: "After only a short visit, it would be impossible to make a completely different assessment than the one made by the psychiatrists". This statement gave me, at least, food for thought. The National Board of Health and Welfare has had the supervisory responsibility the whole time; and still does as far as I can tell. This means that they have been exercising supervisory control during the time since I began visiting Villa 39, that is, since December 21, 1995. How come the National Board of Health and Welfare did not see, did not take note of the changed diagnosis, did not see the educational efforts made by Eve Mandre, initiated by Steffi's parents and resisted by the clinic. They did not see any of the things I saw. Why?

I am one of few outsiders, probably the only one, who is able to testify to the fact that it is quite easy to make sure that one's visits are not so short that it is impossible to make a completely different "assessment".

It would be honorable for the National Board of Health and Welfare to take the initiative in ensuring that Freya's independence is safeguarded at least outwardly for the rest of her life.

The Role of Technology

Education and technology have untied Freya's biggest knots. Eve and I describe this intertwining of education and technology in a separate chapter of this report. Here, I would just like to raise a few general perspectives on technology:

1. Technology is honest

People with disabilities, as well as those around them, can interact with the technology instead of waiting passively for somebody else to take the initiative. Technology is what it purports to be, no more no less.

On the many occasions when Freya gets so upset that her impulses usually get the better of her, something very significant is happening when she is able to say: "I am so upset now that I have to use the computer!" And she will write: "Important message for all staff members". And she knows that it will not be removed, that it will be posted, that it works, that nobody will stop her message.

 

2. Technology is neutral

It is difficult, maybe even impossible, for a human being to be completely neutral. It is particularly important to recognize this when people are acting as substitutes for others with, for example, communication difficulties or other cognitive problems. In this type of situation, the neutrality of technology may provide greater respect for the integrity of the individual than a fellow individual, however well meaning, is able to do.

One example of this is the development of the expert system "Ask Freya" and the honesty this requires between Freya and the staff as well as between staff members.

3. Technology is Concrete

With regard to people with cognitive disabilities in particular, it is essential to have an object to show and refer to when one is trying to understand needs, wishes and dreams. Abstract questions or thoughts simply do not work at all.

Recently, we introduced digital pictures at Villa 39, and Freya is gradually getting used to the fact that you can send pictures and still have them. For many years to come, Freya will not be able to be physically present in every kind of situation. One of the many ways in which technology can make things concrete is by making it easy to give Freya access to as many pictures as she wants.

4. Technology provokes

A thought, a conversation, or a lecture has something fleeting about it. A technical device, however, remains, and in the end forces a decision. Sometimes technology brings a previously hidden contradiction to light which has to be dealt with.

When technology (and the documentation process) made visible what was actually going on at Villa 39, staff began to leave. Now, only three original staff members remain.

 

5. Technology surprises

Even the most open of research approaches has limits to how far it is aiming. When trying to use technology as a language, we have often been surprised by the way reality has answered questions completely different from the ones we have been asking when introducing the technology.

Freya was no exception in this respect. We believed that her computer would be an excellent tool for her to use on her own since she found social interaction very difficult. Instead, it became a meeting-place, an important meeting-place, initially for Freya and Eve, and gradually for many others.

 

6. Technology Liberates

There are moments when neither the user, nor the people around him, notice that he is facing obstacles. If you have not seen them, it is obviously not possible to work towards removing them. In cases such as these, the use of technology can work like liberating education. The absurdity of the situation is revealed. We can discover the unknown by twisting around what is already known.

There could hardly be a better example of this than the difference between Freya's life prior to the winter of 1995 (see" Free Freya part 1") and the development which has taken place since (see "Free Freya part 2" and this part, "Free Freya part 3").

 

7. Technology empowers

In our experience, over the whole range from simple push-button commands to advanced computer technology, only the technology which leads to the empowerment of a disabled person has any profound effect. Empowerment, however, brings revolution.

Freya is a very active participant in the creation of the above-mentioned expert system "Ask Freya". On a recent occasion, when she thought the staff were not taking her views sufficiently into consideration, she clearly showed the extent of her involvement when, in a context which had nothing to do with the expert system, she said: "Aren't we working on the expert system 'Ask Freya'? In that case, don't you think that's what you ought to do? Ask me, that is."

The Future

Freya is not dangerous. She has impulses which sometimes make her kick you, throw rocks at you, pull your hair, or break things. If I did those things, it would definitely be a symptom of aggression. But Freya's actions are not part of a plan, they are nothing more than impulses. She would never knowingly harm another person. In this respect, too, she is a victim of other people's thought patterns in thinking what monsters they would be if they acted like Freya.

It is fascinating to see how Freya's impulses are abating in the long term as a result of a deliberate educational approach. This is the very key to a positive future. As soon as there is just a tiny bit of reflection between thought and action, Freya is incredibly perspicacious and logical.

In a completely different environment, Freya will be able to lead a life that is better than tolerable and she will develop a great deal.

She will still have her disability and very probably some of her impulses and all her rituals, fixed thoughts, and inexperience of normal life. That fact that she has spent her whole life in psychiatric care has certainly contributed to these problems, in some cases even created them. One of these problems is her weight obsession, which developed during the years when, first, she was denied food as a punishment, then refused to eat, then was put on a "therapeutic" fattening diet, then starved herself, etc.

She will need a tremendous amount of support. The following are some "the-mystery-is-solved-but-Freya-still-needs-a-lot-of-support"- keys:

Lund, September 20, 1997

Bodil Jönsson

Bodil Jönsson

Table of Contents


 

Summary

Freya is a 42-year-old woman who has spent most of her life in closed psychiatric care. She has led a very empty and restricted life behind high fences. Many years of therapy with Swedish and foreign psychotherapists did not improve her condition. Her parents were convinced that she had some kind of biological disorder, but their opinion was not seriously considered, rather it was believed that they had caused their daughter's condition. In 1990, Christopher Gillberg managed to get to see Freya and could establish that she suffered from an autism disorder. This meant that she needed educational treatment rather than psychotherapy.

In this report, I will describe how the "Elisabeth myth" was built on very weak evidence and how her life story, as well as that of her parents, has been distorted. A childhood trauma was fabricated and subsequently treated with psychotherapy for several decades. One would think that a patient who has received such expensive treatment should be one of the most thoroughly documented cases in psychiatry, but a closer examination revealed that there was almost no documentation at all.

It was not until Freya was given treatment based on special education that she began to be transformed from a human enigma into a human being who is allowed to develop on her own terms. In addition, documentation became part of the daily routine for all members of the new group of staff set up at Villa 39.

In June 1996, when I took up my position as leader of a project based on Freya's autism diagnosis, it was assumed that Freya would soon move from her specially built house behind the high fences to an environment where she would have more freedom. This proved difficult to accomplish within the psychiatric care services and thoughts were conceived of having Freya discharged from psychiatric care to allow her to live on her own, with assistants, pursuant to the Act Concerning Support and Service for Persons with Certain Functional Impairments.

It became more and more obvious that Freya is not unique outside the psychiatric care services. There are many individuals like Freya living in group homes.

We have now been using education as a method in a psychiatric care context for a period of 15 months. The unfolding of this process will be described below with the aid of many examples which also highlight the complications of life as an autistic.

Freya's departure from her "old" life at Villa 39 began with her computerization. In a chapter co-written by Bodil Jönsson and myself, we describe how the role of the computer has evolved during our work with Freya and how it has benefited our educational efforts.

Freya herself contributes an outline of her thoughts for the future.




Key words: psychiatry, education, autism, handicap technology.

Table of Contents


 

Insight into Freya's Life

The Beginnings of a Change

Free Freya part 1 recounts how a psychiatric enigma of many years found an unusual solution. A child who had eluded her doctors' clinical imagination and attempts at therapy to such an extent that she had become known internationally, was found to have a neurological disability. As she grew older, her life became increasingly entwined in myths of her dangerousness and destructiveness. She was moved between clinics in different countries and was subjected to various psychotherapy treatments. Despite the involvement of experts from several countries, all attempts at treating her ended with the physicians giving up and strapping her down or building ever-higher fences with more and stronger guards.

As recently as in 1990, a specially designed house was built for her. She was given three rooms, one of which had a built-in bed, shelf, and bathtub.

It was in this room that Freya lived her life. After a while, another patient moved into the second room. Her living room was never used, but was turned into a storage room for all kinds of junk. In practice, Freya had access only to one single room, even though a whole house had been built for her.

The walls were covered with a material that can be powerwashed and there was no furniture or other personal belongings. Things she needed in terms of toiletries, clothes and stationary were brought in at set times.

Her life was monotonous and empty. The same thoughts kept going round and round in her head. There was no stimulation which might enable her to develop her thoughts or interests.

She had therapy sessions with her doctor a couple of times a week. She had an English teacher who was training to be a psychotherapist and who mixed English lessons with psychotherapy. A priest sometimes came to visit her.

Her parents had no role in her treatment and for several years they were not even allowed to see her. In their opinion, their daughter's psychosis diagnosis was incorrect and they were constantly looking for help outside the clinic. They contacted Professor Gillberg at the Children's' Neuropsychiatry Clinic in Göteborg after seeing a TV program about MBD/DAMP. They believed that many of the symptoms of this disorder fit in with their daughter. Professor Gillberg managed to get permission to visit Villa 39 to see Freya. He was able to establish that Freya did not have MBD/DAMP but a disorder in the autism spectrum.

Despite this diagnosis, basically nothing changed in Freya's treatment. I met her parents by coincidence. As a special education teacher working with people with autism, I advised them to contact the Disability Care and Habilitation Services Board. A psychologist from the district office of the Board visited Freya and came to the conclusion that the only special care she needed at present was lessons within the framework of the special education system for adults. In addition, her parents were granted counseling and support.

I began working with Freya in October 1992, but even though I have experience with autistic students and even though I was working on the basis of the new diagnosis, I was given no influence over her care. The clinic management tried to ignore me as much as possible. But Freya was receptive and developed in many areas, despite the fact that her daily care was the same as before.

My meeting Bodil Jönsson of Certec in October 1995 marked the beginning of a change. A report we published before Freya became computerized attracted attention and highlighted the deficiencies in her care. The Psychiatry Committee of the South Stockholm Hospital District commissioned myself and Thomas Turtola, the director of Villa 39, to write a project plan which would result in better care for Freya, as well as living arrangements which would preserve her dignity.

In Free Freya part 2 we described how the project began in June of 1996 and how Freya made rapid progress. The report also deals with the problems and deficiencies of the education provided for adults with autism.


The Striptease TV program about Freya/Elisabeth

The television journalist Marianne Spanner has often reported on the psychiatric services in her investigative journalism program "Striptease". She is interested in autism in particular and when she found out that the enigmatic patient "Elisabeth" had been diagnosed as autistic, she applied for permission to make a program about her. As long as the old clinic management was in place, the response was negative, but this changed when the new educational project began. In the meantime, Marianne had done her research and was well prepared when it came time to start filming in the early spring of 1997.

The program aired on August 27 and stirred many people into action who work with psychological problems in children and adults. People from near and far telephoned and wrote to tell us that they were familiar with the problems described in the program:

A friend from my youth phoned: "I have finally found the missing link […] things are falling into place […] Over the years, I have seen many children and youths with Freya's symptoms […] only now do I understand what it is all about!"

Another acquaintance phoned to ask if we could discuss his nephew who had been killed in an accident. In his mind, there were many parallels between the program and his nephew's fate.

Bodil Jönsson, who was also in the program, received similar calls, as did Marianne Spanner.

Twenty inmates from the Uppsala correctional institution sent Freya flowers.


The October meeting of the Swedish Medical Society.

Assistant chief physician Gunnar Akner, who began examinations of Freya in the mid 1980s, has resumed his search for her biological "missing link". He and his colleagues had to interrupt their tests in 1986 since these were considered to interfere with the psychotherapeutic process. Freya herself would like to know and understand the causes behind her disability.

Gunnar Akner also believes that theories and methods in the field of psychiatry are not as clear as in other branches of medical science and have not been the subject of documentation and evaluation to the same extent.

Consequently, he persuaded the Medical Society to devote one of their meetings to "A Difficult Case". The methods used in psychiatry and, in particular, the methods used in caring for Freya will be scrutinized. The panel members are, in addition to Gunnar Akner himself, professors Christopher Gillberg and Lisbet Palmgren, former senior physician Sven Randén, as well as Bodil Jönsson and myself, Eve Mandre. Tore Nilstun, a medical ethics expert from Lund University, will act as moderator.


Freya on the Internet

Freja för anteckningar för att minnas

Freya making notes

The Free Freya reports are available on the Internet (http://www.arkiv.certec.lth.se) and are used as a textbook in a course in rehabilitation engineering. Beginning in the fall semester of 1997, Freya will participate in a chat with the students to answer questions about herself. I will be at home in front of my computer and will answer the same questions. This means that I will be "examined" on my knowledge of Freya by Freya herself.

There has been so much interest in Freya’s fate and in her new life that we have decided to make the Free Freya reports available in English as well. The educational methods and the technology that are being developed around Freya are of general interest. We have been made aware through numerous letters, faxes, and phone calls that there are other individuals who have suffered similar experiences.

A woman who very nearly became another Freya case has contacted Bodil Jönsson.

The similarities between them are remarkable.

Table of Contents


 

A Long Process

From care to education

The project around Freya’s new living arrangements was to take place in a psychiatric organization, but with an educator as leader. When I began my work as project leader on June 1, 1996, it became necessary to clarify the meaning of education in the context of daily life in a psychiatric ward. To many people, education means the teaching of school subjects. Naturally, for an intellectual person like Freya, who has been idle and isolated for so long, reading for knowledge, entertainment, and to keep occupied is necessary since it gives her a great deal of pleasure, but the type of education needed in Freya’s daily life is something completely different.

Education in daily life

Education in daily life is about making Freya break free from her stereotyped thinking and her purposeless rituals. It should constitute an overall structure in everything she does, and thus make life more comprehensible to her. It should be the responsibility of not just one educator but of all staff members. The role of the educator is to train the rest of the staff to think in terms of education in all situations of everyday life.

The first year involved major changes for Freya. She was occupied on a daily basis and discovered the pleasures of sewing. She read a lot, learned how to be indoors, corresponded with several important individuals via fax, played ball games indoors and out, went swimming in her pool in the summer and learned a great deal about social interaction. Freya had lived in isolation for a long time and found some aspects of language difficult to understand. Phenomena such as figurative meaning and ambiguity often led to misinterpretations that upset her.

"The fruit bag "

A common type of misunderstanding occurred one morning when Freya was cleaning her room. Since she was able to manage an increasing number of tasks, I had written a new set of instructions for how to clean the grate outside her door, where a lot of dirt collects.

The first step was to pull a small plastic bag, the size of a fruit bag, over her hand.

Freya got upset and demanded that I cross out the word "fruit bag". I asked her to explain why. In my opinion, it was a good idea for the staff to know what kind of bag she was supposed to use. Freya understood the word fruit bag to mean a bag containing fruit and she did not want any extra fruit. So that she would understand that nobody intended for her to have fruit in the bag she pulled over her hand, we tried out an empty fruit bag. It was only then that Freya realized that a fruit bag does not have to contain fruit and that it can be used for other purposes.

One of Freya's discussions with Kenneth Å

One of Freya's discussions with Kenneth Å

Talking and discussing

Discussing things was difficult. Freya was not used to compromising. Her usual way of having a say in her life was to nag people until they gave in. Her nagging would get louder and louder until she became so upset that she would start ripping up her clothes. We tried to teach her a new way of being part of the decision-making.

We practiced taking turns speaking and listening. Freya needed a lot of practice in order to understand what discussing means. That one does not automatically get ones way just because one states a wish.

One also has to consider other people’s arguments.

Freya’s strategy was to raise her voice and become upset if her arguments were not winning.

Accordingly, one of my lessons on this subject went as follows:

"A discussion is a kind of conversation where you can give your opinion on something. You have the right to whatever opinion you like. You take turns listening to each other. You are not supposed to convince the other person to think the way you think. What is important is that both persons are given an opportunity to speak and that you take turns listening."

As time went on, Freya learned that a dialogue means that you are supposed to take turns talking. She also got to experience reaching a compromise. Sometimes, there were still difficulties because of expressions which Freya did not understand. One Friday afternoon I did not want to agree to a change proposed by Freya. I thought that I would manage to get out of the situation temporarily by using the vague expression "That needs thinking over!" and then go home for the weekend.

These are my notes from the following Monday:

"This morning Freya said that she would not help cleaning if she did not get a sticker as a reward. She referred to her agreement with me from Friday, but I could not remember any such agreement. I said that I had meant exactly the opposite, and that I was not going to agree to her getting stickers as a reward for doing things which were part of her regular daily routine.

She kept nagging me all morning and I had to explain about 286 times what it means when somebody says, "That needs thinking over!". Again and again, Freya insisted on discussing it with me. After a while, she wouldn’t even agree to receive stickers in order eventually to win the bag in the television window. She wanted to have the bag right away. She couldn’t wait another day. She wanted to buy it from me. She had to have it so that she wouldn’t get so upset she would start ripping up her clothes. She presented many arguments and I tried to remind her of what it means to discuss something. That it does not mean always having your way. That it means that both parties have the right to express their opinion and that you try to come to an agreement. That there is such a thing as a compromise. We had reached a compromise the previous week when we decided that 14 rather than 30 stickers were required to win the bag.

These discussions, alternating with her threats of ripping up her clothes if things did not go her way, went on from 10 o’clock till noon and resumed with renewed vigor at 2 o’clock. Finally, I had to use a mild threat. I said that I was on the verge of becoming as fed up with her nagging as I had been on the two occasions when I had not been able to be with her for a long time until my anger had abated. Freya remembered those occasions very well. I had been pacing back and forth at the far end of the exercise yard looking absolutely furious. She quickly cut back on her demands for stickers and at 3 o’clock we were able to begin reading the book we were supposed to have read at 10 o’clock."

Doing the laundry

Felix doing the laundry

Felix doing the laundry

Freya’s daily life education included coming to an agreement on how often the laundry should be done. If it were up to Freya, her clothes would be washed every day. If we were to start washing them every day, she would probably find that they were dirty after half a day, and so on. Much of her education is about being persistent and arguing things that other people do not spend much time worrying about. Most of us know when our clothes are dirty and need washing and, usually, we do not need to create special rituals in this regard. People who are obsessed with creating rituals will do this continually if we do not find ways of avoiding it. Consequently, Freya has had to agree to a compromise when setting her laundry rules.

"Important message for all staff:

My clothes should be washed on Mondays, Wednesdays, Fridays and Saturdays!"

However, sometimes there are accidents which makes an extra washing day necessary. On these occasions, Freya has to state the reason why her clothes need washing, for example:

"The laundry should be done tonight (Thursday). Reason: wrestling match on the lawn."

On this occasion, Freya had thrown herself down on the ground when we were jogging in the park because she did not want me to attend a meeting after our run.

Freya is given a voice

At first, Freya had problems participating in decision-making. She was given a large number of things to which she had not had access before. She was given the same kind of blue blanket that the staff members use when they are on call and stay the night. She treasured it. One day, a staff member had put another newly washed blue blanket on the bench in Freya’s living room, which is next to the laundry room. Freya grabbed it when nobody was watching. Nobody noticed, but Freya had a bad conscience because of it. The following morning, Freya wanted to write something on her computer. At the time, she was using the computer for all important messages to the staff. She wrote:

"Important message for all staff members!

I found a blue blanket on the bench and brought it into my room. I am trying to convince Eve that I should be allowed to keep both of them. I am doing this by promising that there will not be any additional laundry. I will wash the other blue blanket on Wednesdays instead of the mattress cover. So there will not be more laundry.

I think it feels REALLY NICE put two clean blankets over me.

If they get dirty between Wednesdays, I will not get them back until the following Wednesday."

Freya, December 18, 1996

During this period, Freya constantly wrote new washing instructions for all her new things. She had made a mattress for herself from a blue blanket with a foam insert:

"Washing instructions for mattress:

1. Wash the mattress on the 13th of every month.
If the 13th falls on a Saturday or on a Sunday, it should be washed on the previous Friday.
This also applies to the mattress cover."

Freya, December 19, 1996

Sometimes, all her talk about how everything must be washed on different days gets to be too much. Suddenly, she has so many clothes on her shelves. She has several blankets, a mattress, a mattress cover, sheets and a bedspread.

Although we think that she has made great progress by being able to have so many things, we still get tired of all her nagging about washing instructions.

One day, I felt so tired that I was unable to answer her except by using the computer:

You are nagging me.
I just won’t listen to you.
Write me something on the computer instead!

Freya and Kenneth N, reading books by Susanne Schäfer

Freya and Kenneth N, reading books by Susanne Schäfer


Breaking with rituals

For years, Freya has been in the habit of walking back and forth along the fence around her exercise yard and she sometimes gets worried about sitting still. For many years, she spent most of the day outdoors. She was outdoors between 10 a.m. and noon and 2 p.m. and 4.30 p.m. As a result, she did not have the opportunity to experience indoor activities. Her computerization was the turning point which made Freya come inside for short periods to write faxes or e-mail messages to Bodil Jönsson and to write important messages to the staff. Through the first fall and winter, she gradually became used to spending more time indoors. She was given tasks such as folding her laundry when it came back from the laundry room, sorting the laundry and putting it on her shelves, mending pieces that were torn, and making her own sheets. She also had an interesting science computer program in English, from which she wanted printouts. Spending so much time indoors made her start worrying about her weight.

I wrote Freya one of my many stories to explain what things were really like:

"A woman who is used to exercising says that she spent far too much time sitting still one day. She thinks that she will gain weight from having been sitting down sewing in her living room. All morning.

I believe that she is completely wrong. In the morning, she went for her usual run in the park. Then she did some exercises indoors before she started sewing.

After lunch, at 14.30 to be precise, she did the Cage Olympics by herself and filled out her score card very carefully.

Then she and one of her long-time friends did some sewing on her wedding dress. Then she beat her partner 10 – 8 in a basket ball game..

At 4.20 she will be playing soccer outdoors.

It is obvious that this woman is not leading a sedentary life."

October 15, 1996

When Freya read this, she smiled contentedly and said: "That’s good … That’s good!"

Eve and Freja jogging in the exercise yard

Eve and Freja jogging in the exercise yard


From a sauna fund to a private budget

In the summer of 1996, Freya began saving up for a sauna. This became a first incentive for her to stop ripping up her clothes. She has a list in her room stating the cost of all her clothing. She goes through several stages when ripping up her clothes:

Over the fall and the winter, Freya ripped up very few pieces. In the spring, she was put in charge of her own private budget. She receives salary of 2000 kronor a month, with which she must buy her own clothes, toiletries, and books or knickknacks.

For the first few months she decided what to buy well in advance. She drew up lists, which she kept changing until her shopping day arrived. She was very careful in choosing what clothes to buy and she looked at clothes the staff were wearing for inspiration and ideas. At first, she also miscalculated and overspent. On those occasions, she was allowed to borrow money from petty cash and pay it back the next time she got paid. It was time to talk to Freya about concepts like the debt trap.

Freya caught on, and month by month her realism grew as regards her true needs.

The following are the minutes of a consultation meeting between Freya and myself on June 18, 1997:

§1. What are my priorities for this month’s salary of 2000 kronor?
1312 kronor remain when I have paid my debt to petty cash and bought toiletries and other necessities for 500 kronor.
§2. The 11 stamps remaining from last month will have to suffice. It is unnecessary to write letters where I repeat the same silly nonsense. They are not worth spending money on!
§3. I will not buy dolls or soft toys. If I get things like that for free, that would be OK
Sometimes you have to indulge yourself.
I will not spend money on card games or balls.
We can play with pinecones in the countryside. That will be cheaper.
§4. The following are my priorities:
1. A life jacket
2. A windbreaker (like Eve’s)
3. A watch, preferably a pink Barbie watch, or if not, a sports watch with a pink face and a green strap.
4. Sheets

Everything was going fine until August 1997. Then she began to worry about her impending move to the extent that one night she ripped up clothing worth close to 1000 kronor. She was extremely upset about it, but she could not help being terrified when she thought about the times she had been moved without prior warning. Time was going by and we still had no house to move to. The planning and discussing was dragging on and nobody could tell her what was going to happen. Everyone was powerless to influence events.

Freya’s consultation meetings with Kenneth and myself

Like I always do when something is wrong and Freya is not doing well, I invited her to a consultation meeting.

In addition to these crisis meetings, we have consultation meetings approximately once a week to prevent small problems from growing into big insoluble ones. When I am away, Kenneth, a nursing assistant, holds these meetings with Freya. They provide support for her thinking. When she presents a problem, she is put on the right track to finding problem-solving strategies. It is important not to give her finished solutions, but to let her think for herself.

The following is an excerpt from my notes taken at the meeting held on August 29, 1997:

  1. The most important items on the agenda for this meeting are Freya’s private budget and clothing purchases.
    The day before the meeting Freya had become very anxious and had started ripping up clothes.
    What to do now?
    Should Freya go one step backwards and no longer be allowed to decide what clothes to buy for herself?

    It is essential to find out what has caused her anxiety. Why is Freya unsettled right now?

    Freya says:

    My parents are going to Austria. Three weeks is a long time. They won’t change their minds even though I am upset!

    I’m worried about moving, I think about it several times a day. Maybe some bosses will come and get me and move me to another clinic or somewhere.

    I can see that you cannot agree about Y… that’s what worries me. I know that they can ignore Eve’s and Thomas’s wishes and do as they please. I can’t stop worrying about that. I can’t tell the directors about it…

  2. Freya asks:
    What can we save for next winter?

    What can we save for next winter?

    How do I know how many clothes I need to have on my shelves and in the storeroom?
    How many clothes do you need? I don’t know how to decide?

    Freya gets help in figuring it out:

    You need to have a complete change of clothing.
    I usually wear one sweater the whole day. But, if it gets stained during the day I need to change it.

    I think that four on my shelf and one in the storeroom will do. Then I’ll have enough for unexpected events.

    An unexpected event may be that the washing machine breaks down, for example.

  3. Freya asks:

    What should I do when I get upset but I don’t want to rip up my clothes?

    After being helped along in her thinking, she answers the question herself:

    I can keep old clothes in a bag and tear them up if I get worried. Then there is no harm done, really.

  4. Freya asks:
    What can we save for next summer?

    What can we save for next summer?

    How do you figure out what kind of clothes you need to have on hand?

    With support, Freya arrives at the answer herself:

    You need clothes for every season:
    summer clothing for the summer season,
    fall clothing for the fall season,
    winter clothing for the winter season,
    spring clothing for the spring season.

  5. Freya asks:

    What do you do with your old clothes? Do you throw them out when the season is over?

    After a lengthy discussion, Freya understands that:

    No, you do not throw out your newest clothes. You can go through your clothes and throw out your worn summer clothing when it is cold enough to buy clothes for fall. Then you can put some of your clothes in a "ripping-up bag" and save the rest for next year. It is important to have your new clothes before you start ripping up your old ones.


Freya’s food and weight problems

Freya needs to learn about most aspects of daily life. There are many problems which she is unable to work out on her own. She has no experience of putting together menus. She has always been used to not being included in discussions about food because she worries so much about gaining weight. The fact that those around her have agreed to her never talking about food, to nobody talking about food, to her not seeing food and smelling food has made her life incredibly limited.

The following is an excerpt from an interview I held with Freya:

E: When did you first become preoccupied with food and with your weight?
F: There were several periods between 1970 and 1973 when I was first denied food as punishment and then put on a high calorie diet as a therapy and I just gorged myself. After that I lost so much weight that I weighed only 80 pounds because I was counting calories.
E: What makes you spit out your food sometimes?
F: It was difficult when I had put hot dogs and herring on the menu the same week. I solved the problem myself by choosing lean fish, because then I know I won’t gain weight. I came up with the idea myself of having a different menu this week.
E: What does it feel like to deny yourself so many things because you don’t want to gain weight?
F: You can’t have all those goodies if you want to be thin and good-looking. You look better if you are thin. You have to make a choice."

Now, Freya participates in putting together her weekly menu. During the fall and winter, she collaborated with Thomas in putting it together. In the summer, Kenneth took over.

This is how Kenneth describes Freya’s weight and food problems:

According to Freya, her ideal weight is around 80 pounds. She thinks that the size of her head is best suited to a body of that size. For several years, her weight has been fairly steady at about 105 pounds. This weight has been determined jointly by Freya and the staff. Freya checks her weight every two weeks. A special plan of action has to be in place for weight gains of more than a pound.

There are many things to consider when Freya does her weekly menu. There is no end to her thoughts where food is concerned.

Her weekly menu should include food with the following characteristics: nutritional, fat-free other than what is needed for certain vitamins to be absorbed by the body, it should be varied, contain no sugar, and preferably be solid in consistency. It may include puddings, gratins, pancakes, and similar dishes. She likes mashed potatoes made from a powder, and eats them with hot dogs or meat sauce. She is not too fond of eggs because of the cholesterol. At lunch and dinner, Freya always eats about two pounds’ worth of fresh fruit and vegetables.

A weekly menu like the one below will have been mulled over for a long time before being posted on the kitchen wall:

Freya's sunday dinner

Freya's sunday dinner

Monday lunch:
dinner:
1 potato dumpling
oatmeal
Tuesday lunch:
dinner:
mashed potatoes and lean hot dogs
mushroom soup
Wednesday lunch:
dinner:
beet pie
cream of wheat
Thursday lunch:
dinner:
thick pancakes
cream of asparagus soup
Friday lunch:
dinner:
mashed potatoes with 3 pieces of herring
porridge
Saturday lunch:
dinner:
macaroni gratin with lentils
cottage cheese salad
Sunday lunch:
dinner:
fish pudding
whole-wheat porridge

Freya never eats in the company of others. She does not want to know what other people are eating. It is particularly important to her that other people do not talk about food that she likes. On the other hand, she loves to have parties and to serve her guests pastries and other fatty foods. One of the things that brings her the most pleasure during her excursions to the countryside is when she can offer the nursing assistants candies and rumballs with their coffee.

An event from November 23, 1996 illustrates how incredibly complicated her food rituals have become:

Freya’s parents had been for a visit and had brought her a bag of sharonfruit (a sweet persimmon), which is Freya’s absolute favorite. The staff gave her an apple instead of a sharonfruit for lunch. They corrected their mistake, but after lunch Freya ripped up pieces of clothing, notepads, and tea bags. Later in the afternoon, she explained her behavior:

"Almost all my reserves are gone. I substituted the sharonfruit for the apple. Substituting is difficult. I want to have both. If I get both, I start worrying about my weight. If I only get one, I worry that the one that’s left might go bad if I don’t eat it. It was good that Göthe insisted that I only get one piece of fruit and substituted it. Otherwise, it would have been even worse.

When I started ripping things up, my thinking went like this: I don’t want to ruin my most expensive things, the Helly Hansen suit and my new boots are expensive. I mustn’t rip those up. It’s better to take something old that I’ll throw out anyway: a T-shirt, a pair of underwear, and a pair of socks. I’ve had the books in my bag for several months. I don’t have them any longer. I am very sorry about that!"

Freya has a long and difficult road to travel before she will stop ripping up her clothes and destroying her precious possessions. The first step towards a change is to make sure that Freya is mentally balanced and subjected to as little stress as possible. Excessive stress, being upset about mistakes or something she does not understand, increases the tension in her body and the tension has to find an outlet. During the fall and winter, we made great progress in this area. In the spring and summer she stopped ripping up clothes almost completely, but as soon as there is a threatening cloud on the horizon, she starts again. However, her awareness is clearly growing and she is gradually cutting back so that there will be as little damage as possible.

Dealing with Freya’s food might seem daunting to a person who is not familiar with her rituals, but the scenario outlined above is considerably more flexible than was the situation a year ago.

Today, it is possible to arrive at a compromise. It is possible to admit that a mistake has been made and to correct it. It is possible to exchange a bad or not very tasty vegetable for something else without risking imminent disaster.

But two things going wrong at the same meal was still too much at the beginning of September 1997. One day, I had forgotten to give Freya spinach and one of her lettuce leaves did not taste good. Freya spit out the lettuce leaf and wanted a new one. She also reminded me about the spinach. Still, everything seemed fine until the afternoon, when Freya came out of her room and was very upset. She had been thinking about whether the lettuce leaf I had given her was bigger than the one she returned. I had to explain at least 20 times that a lettuce leaf that she has already chewed and then spit out constitutes a smaller amount than a fresh one. After I went over it numerous times, Freya was satisfied with the answer.

For the moment she stopped worrying about the fact that, in a short time, her weight had increased to 108 pounds!

Being close to other people

A little more than a year has gone by since we started spending time with Freya in her exercise yard, and in her room and living room on a regular basis. From the summer of 1996 to the spring of 1997, we regularly went for a run in the park. In the spring, the old clinic was torn down, a lot of concrete was smashed and ended up in a huge pile on the front lawn, which meant that we could no longer get out into the park with Freya.

Kenneth Ågren quite simply approached Freya in her exercise yard

Kenneth Ågren
quite simply approached Freya
in her exercise yard

During the fall and the winter, we had a large turnover of staff, since almost all staff members quit. For a long time, we had only temporary nursing assistants employed on an hourly basis. Most of them were not able to approach Freya and, during this period, the two Thomases, Göthe, and myself were the people who were most important to her. In March/April a new staff group was forming and Freya accepted several of the staff members surprisingly quickly. Kenneth Ågren quite simply approached Freya in her exercise yard on one of his first days on the job, as if it were the most natural thing in the world. It did not even occur to Freya to consider whether there was anything strange about his way of just being there with her. After spending about a week with Kenneth, Freya asked me whether I had a lot of paper work waiting to be done. "I don’t want you to become exhausted from spending too much time with me," she said tactfully. "Kenneth can be with me now!"

Soon Freya accepted more and more new people around her. Her "electric legs" had all but disappeared when she was outdoors. But in her living room she would sometimes throw her boots, shoes, or some other object when she became tense or nervous about something.

It became clear that it was easier for new men to be close to her than it was for new women. She is still not sure that women will be able to control her impulses if necessary. This fear resulted in two of the new women staff members having to leave after the end of their probationary period. Freya tests the strength of all new individuals and she only feels secure if they clearly show that they will not back down and are not afraid.

Growing flexibility

For a large part of her life, Freya has been obsessed with various rituals and routines which have made her life more limited. Everything has been done at set times and a delay of just a minute would make her panic. One of these rituals concerns handing over her clothes and shoes after spending time outdoors. To be able to hand over her things to the staff, she used to have to exchange them for a piece of a newspaper, which she would rip up and throw out.

We began an attempt to break this ritual when Freya was allowed to come into the living room herself to hang up her coat and put her shoes outside the door. We put a box of old newspapers on the computer cabinet for her to rip up if she wished. Often, Freya is so busy taking care of her clothes or reminding the staff about something, that she forgets to take a piece of newspaper from the box. Hopefully, in this way, we will be able to end this ritual.

We have been able to break her time fixation in so far as she is able to accept a 10-15 minute delay without panicking. Until recently, the only time it was absolutely essential to keep was the time of the phone calls from her parents.

Consequently, we were very surprised when Freya calmly accepted a delay in her parents’ phoning her one afternoon this March. Freya was sitting by the phone, waiting for their call. Her notes of important topics to discuss were lying in front of her, but the ring she was waiting for did not come. We tried to phone her parents, but there was no answer. After ten minutes we gave up realizing that there must have been some misunderstanding. Freya put her notes away and asked what we would do for the last half-hour before dinner. It felt like a momentous occasion!

 

Freya’s parties

As a result of her new flexibility where time is concerned, Freya likes to spend more time in her living room in the evenings if she does not have letters to write. She likes to jump on the trampoline, sew, write on her computer, or dance to music played on the computer.

In the fall, Freya wanted to have a birthday celebration for Bodil Jönsson, when Bodil was visiting Stockholm a few days after her birthday. The party was held in Freya’s room between 6 and 7.30. The two Thomases, Julia, the dog, and I were also invited. We were treated to pastries and coffee. Freya gave her own pastry to Julia. Then Bodil gave her a physics book and a physics lesson.

In November, Freya celebrated her wedding. She wanted to marry Tizian, whom she had sewn herself. My son Benjamin was invited to be a witness. Other invitees were Freya’s fellow patient P and Felix, who was working that evening. After the wedding ceremony the guests had pastries and coffee and then they all played a game of cards. The bridal couple had received the deck of cards as a wedding present.

Card-game Old Maid without a bridegroom

Playing "Old Maid" without a bridegroom

In January, Freya invited Lena Andersson (a psychologist working for the Autism Association) to the same kind of evening party. Her fellow patient P was invited this time as well, as was I and Ewa who was on call that night. This was the first time we used a tablecloth and it lasted the entire evening. The door to the kitchen was open, which is quite common these days. Freya tried to make a detour out there, but was quickly brought back against her will. She still cannot handle all the temptations a kitchen has to offer.

Freya enjoys these parties very much and would prefer to have one every month.

 

From impulse to action

Where Freya is concerned, the distance between impulse and action has always been short. It became even shorter during all those years when she was isolated from other people. We have tried to work on this by, for instance, spending time with her and being there to help her when the impulsive actions occur. The way to drive a wedge between impulse and action is to intervene immediately and prevent Freya from carrying out her impulsive actions.

It has probably also been helpful that, in moments of agitation, Freya has been obliged to stand by the computer screen and write down her thoughts. In this way, she has to concentrate on finding adequate ways of expressing her thoughts and when the message is finished she is no longer upset. Moreover, Freya’s ability to discuss things and to find solutions to problems has improved considerably, so destroying things is no longer her only means of overcoming tension and agitation.

Freya provided an excellent example of this in the first week of March, when she told me the following story:

"Last night, P was yelling so much that I couldn’t sleep, but I thought that I shouldn’t suffer because of his yelling by starting to rip up my things. It’s better if I get angry and throw pebbles at him tomorrow instead!"

That night she had not destroyed any of her things like she always did when her fellow patient P kept her awake. We try to prevent her from throwing pebbles as best we can.

However, on another occasion, her impulse came out of the blue. Freya cleans her room every morning, which means that her breakfast is delayed. She has come up with the idea of saving a couple of bread slices from the night before, so that she will not be too hungry while she cleans.

This turned into a problem one morning when she had done her cleaning faster than usual. The thought struck her that breakfast would be too close in time to when she had the two pieces of bread. Her thought was so sudden and filled her with such dread that the floor scraper she was holding simply flew away and the handle bounced off Kenneth’s forehead. He ended up with a big bump on his head.

 

Writing to the County Administrative Court, the Administrative Court of Appeal and the Supreme Administrative Court

During her years in isolation, Freya was a notorious letter writer. She did not hesitate to write humorous letters to public officials, as well as to doctors and relatives. The most frequent recipient of letters from Freya was the County Administrative Court. She usually wrote about once a week to request permission to go on leave on her own. The Court always gave the same reasons why she could not be granted this type of leave. Freya then automatically appealed the decision to the Administrative Court of Appeal and the Supreme Administrative Court.

This correspondence had become a ritual lasting several years. However, in February a change occurred. One day, Freya was reading the reply from the County Administrative Court while we were walking in the exercise yard. She was amazed that the answer was always the same. I explained that it was quite natural that the answer would be the same. It was true that she had made progress, but not progress of the kind that made it possible for her to go walking in the town with no staff accompanying her. Freya tried to argue about it, but somewhere inside her awareness was growing.

A few days later, I wrote Freya one of my social stories. It starts with a window being smashed and ends as follows:

The woman’s loyal friends, who think she is making good progress, are not prepared to let her out into an unpredictable world, where there are window panes, flower pots, and people who sell food, and people who eat food, and many other things which the woman has difficulty just walking by. Her loyal friends are of exactly the same opinion as the County Administrative Court in this regard.

Appealing the decision to the Administrative Court of Appeal or to the Supreme Administrative Court will not help this woman gain greater freedom to go out on her own.

The only thing that will help is for the woman to make such progress at home that her loyal friends will be prepared to agree with her that she should be granted leave. She will not have made this kind of progress until the day when she is able to ride in a car without a car sack and to go for walks on her own near her home.

February 4, 1997

Freya understood this story. Shortly thereafter, the cost of a stamp went up and when Freya heard that it cost 5 kronor to send a letter to the Court, she said:

"Five kronor for that silly nonsense? I’m not paying that!"

In this way, Freya stopped one of her old rituals and in the very near future she will have an opportunity for the review of her commitment into closed psychiatric care. What Freya did not know when she wrote these habitual letters to the County Administrative Court was that this meant that she lost her right to a twice yearly review of her sentence. Nobody had made certain that Freya understood the meaning of the rejections or how the review process worked. When she gained a clear understanding of the situation, she was able act differently and to think along new lines entirely.

 

Education - a part of every aspect of daily life

This type of everyday life education cannot be carried out only when you feel like it or when you have some spare time. It must be integrated into all daily activities. They must be imbued with it. This kind of working method requires time to plan, motivated staff members, and knowledge about autism as well as about Freya as an individual. In order for Freya to function better in her everyday life, those around her must help her develop her thoughts and her language. She also requires help in gradually finding a way out of her purposeless rituals so that her world can expand while the structure of her activities remains. Because routines are needed to make her life safe and predictable.

In addition to this type of education, Freya needs to learn new things by talking to people and reading for knowledge. She also needs to learn rules for how to maintain a relationship with people outside her own limited world. Freya has corresponded a great deal with various individuals and public authorities, but, in recent years, her way of writing has been very stereotyped. Very few people can see her humorous intentions from reading her jokes.

Compared with her recent letters, the letters she wrote in her childhood show greater use of vocabulary and themes.

Table of Contents


 

Understanding Autism

Freya’s disability cannot be looked at in the same way as a mental illness. Her previous treatment was based on the assumption that she started out in good health and that with the aid of therapy and medication she could get well again. What actually happened was perplexing: all sedatives had the opposite effect on her. The treatments usually ended in the use of coercive measures, which terrified her. Despite many years of different kinds of therapy, Freya got gradually worse as long as she was in environments which to her seemed incomprehensible and unstructured. A certain improvement could be observed when she moved into her specially built house. In that house, she is able to get an overview of her environment. There is so little room for action on her part, that the choice is never difficult. She has adopted numerous rituals, which control her life completely. She has an exercise yard where she walks by herself most of the time, and there are few unexpected events.

Her many years of hospitalization have left their mark on the adult Freya of today.

As a child, she had the following symptoms:

Trip to Italy

Trip to Italy

Perception disorders: She was afraid of loud noises and exhibited a tactile defense mechanism, i.e. she did not like it when strangers touched her or came near her.

Freya herself explains that the impressions she received were often so strong that she thought she would lose consciousness. This meant that she was afraid of going anywhere without her parents. She remembers that, even as a very small child, she had thoughts of not wanting to fall unconscious without her parents being there.

Selective mutism: Freya refused to speak to anybody but the members of her family. To some extent, this trait is still noticeable, when Freya is to speak to the head physician or the director of operations. One moment, when they are not present, she knows exactly what she wants to tell them. The next moment, when they are present, she falls silent and is afraid to speak.

Lack of impulse control: Even as a child, Freya had difficulty controlling her impulses, which meant that she would do the most unexpected things. In the sandbox, she would destroy the other children’s sandcastles in a flash. When walking across a bridge, her sandals would disappear into the water before her parents had time to react, etc.

A different way of perceiving the world: Despite being interested in other children, Freya was unable to play with them. She did not understand what their games were all about. As an adult, she remembers that other children would gather around her and laugh at her without her understanding why. Her own games consisted of putting her dolls and teddy bears in a row and pretending to feed them. She spent a lot of time playing by herself and she liked to draw, write, and learn numbers. She did not like fairy tales, preferring rhythmic rhymes and songs.

Fear of change: Freya found it difficult to adapt to new situations. She did not like surprises or changes. This led to her creating rituals even at a young age.

With Freya’s new diagnosis having been established by the psychiatric services, her behavior, too, must be viewed in a completely different light. Today, at the age of 41, she is characterized by all the routines and rituals in which she has enveloped herself over the years. They are not impossible to understand or treat. It does, however, require us to view her behavior from a new perspective.

 

What about the violence?

For many years, Freya was considered an extremely dangerous psychiatric patient. She was isolated, bound hand and foot, and finally ended up behind a 28-foot fence. It was only a few years ago that I walked in to see her behind that fence for the first time. It was a gradual process, with Freya deciding how close I could get. In a remarkably short time, it was possible to come close to her in the exercise yard as well as indoors.

It can thus be stated with great certainty that the reason behind Freya’s attacks on other people is not inherent aggression.

Consequently, the reason behind the attacks must be connected to her treatment and the way she has been viewed. Like other people with autism, Freya has a few peculiarities which someone who lacks knowledge about autism may find difficult to understand. People with autism have a very concrete way of thinking based on here-and-now-situations. Everything has to be explained to her in a very concrete way, and one has to make certain that she has understood. When she is uncertain, what seems like a trivial problem to us can loom large and seem almost insoluble to her. This, in turn, can result in agitation that she cannot control. All strong feelings in her must find physical/motoric release. It is not a sign of aggression when she rips something up or starts kicking, it is a matter of releasing emotions.

Fear has been Freya’s companion for decades. She describes in great detail how frightened and panic-stricken she would feel when she did not understand other people’s intentions. She learned to strike before she was struck or overpowered. When we first approached her, she was very tense. The tension triggered reflexes in her legs. This is what we called her electric legs, which hardly exist anymore.

Strong feelings of disappointment, agitation, fear that promises will not be kept, and unexpected events can still make her destroy things. We have begun to prevent her from ripping and destroying things, which means that altercations sometimes occur. In such an altercation, we sometimes get kicked in the leg or, rarely, bitten in the arm.

One of the Kenneths with glasses

One of the Kenneths with glasses


Glasses are the type of object that activates her impulses and several pairs have been bent or crushed since she started being near other people. The new nursing assistants all wear glasses, and they will be getting contact lenses paid for by their employer so as not to provoke unnecessary impulsive acts on Freya’s part.

The main ways of dealing with her emotional outbursts is to avoid surprises, unnecessary changes to her routines, unclear language, as well as vague answers and promises. In this way her life is made much easier and situations which may lead to violence are avoided. Not even those who have a good knowledge of and insight into autistic thinking are always able to manage this.

Just like in all cultural clashes, it is not always possible to avoid misinterpretations or misguided actions in the meeting between our normal culture and the autistic culture. By documenting different situations where some type of violence has occurred, we are able to inform each other of our experience of Freya’s reactions and learn how to deal with her tension and strong emotions more efficiently. The expert system "Ask Freya" is a way of documenting such events and gives new staff easy access to useful suggestions for action before gaining experience on their own.

 

Tension and mental vacuum

If you have no experience of people with autism it may be difficult to imagine why an intelligent adult would bite somebody’s arm or destroy her own clothes and most precious possessions. The best way of explaining this is by a real life example. The following happened on March 10:

For a period of time, Freya had been getting small rewards in the mornings for keeping her room clean. One morning, I showed Freya a bag of beads in the shape of horses. Previously, she had always liked these kinds of beads, but this time she grabbed the bag and tore it open so that all the beads flew all over the floor. I had to take the bag from her with only a few beads left.

Freya said that she had not expected to be getting beads. She had imagined that she would get a soft toy. Since we had never talked about soft toys as a reward, I had never even considered giving her one. Freya believes that if she knows then everybody else knows, and now she was very disappointed.

The combination of surprise and disappointment was so strong that she could not contain her impulse to tear open the bag of beads. Next, she ran over to a pile of laundry lying on the bench waiting to be folded. She started pulling on one of her polo shirts. I knew that she really liked the shirt and that she would be very upset if it was ruined. So I intervened. I tried to take the shirt from her, but she would not let go. At that moment, we were equal in strength. Neither of us was able to gain the upper hand, but suddenly Freya bit me in the arm so hard that it started to bleed. She got frightened and let go and then wanted to go outside, when she realized that she had hurt me and did not want to risk further injuries.

After lunch, she explained:

"I was so surprised that you had bought beads that I couldn’t think clearly. I didn’t expect beads because I had already made a necklace for my mum. I didn’t know what to do with them and I was disappointed! Now, I have thought about it and I would like to have them. I can make myself a headband. I didn’t think of that when everything happened so quickly this morning."

She realized that her action had been precipitate and that she should have stopped to think. I, too, realized something important, which is that all surprises, however small and unimportant they may seem to us, leave Freya in a mental vacuum. It takes Freya longer than it does for most of us to retrieve knowledge from its storage place in the brain and use it for solving problems. This process takes much longer in her case. Events such as this will be documented in the expert system under "successful altercations" or "failed altercations". I consider this event to be both a success and a failure. It gave me an important insight into Freya’s way of thinking and functioning, but my swollen arm did not feel like much of a success.

Table of Contents


 

Special education and special technology

Bodil Jönsson and Eve Mandre

It all began with a computer for Freya – for writing on, for faxes and e-mail, and for other Internet functions. Lately she has also begun to use it for working with pictures. From the very beginning, we had plans for a combination of special education and special technology specially designed for Freya. This idea has been implemented gradually in close collaboration between Eve Mandre, of Villa 39, and Charlotte Magnusson and Bodil Jönsson, both of Certec.


Individual programs for individual needs

Every individual has the right to be seen for what she is (this applies to everyone, even small children. The UN Convention on Children’s Rights states that "Every child has the right to a name and an identity"). Certec tries to bring the individual aspect into the development of technology. In our experience, it is better to aim for complete adaptation to individual needs than to start out by attempting to make something generally good for an ill-defined user group. Many examples, which can be found at http://www.arkiv.certec.lth.se, illustrate the importance of this approach. In the multimedia program Gun’s Garden, for example, the fact that the garden was her own was an advantage for Gun. But, other people also found it easier to take in the idea for the very reason that it had been developed for use by a specific individual.

In Freya’s case it was essential to make something which she (and the staff) would find enjoyable and enriching. Its most important contribution should be to make Freya more visible, both to herself and to those around her. Obviously, the idea is that some misunderstandings and misconceptions can become self-destructing if they become visible enough. Another important object was to get Freya and the staff to agree on what the problems really are and what solutions are possible.

If one finds it difficult to understand a person with a deviant pattern of thinking and acting, the most obvious method is one which, unfortunately, in Freya’s case has been sadly underused: asking the individual herself. If this is not possible, one must try to ask and bring together various representatives of the world around her. Then, the individual concerned - in this case Freya - who is the most reliable source of information about herself, must give her opinion on what has been suggested. Her interpretations and conceptions of causes are often crystal clear.

Consequently, the umbrella term for this educational approach using special technology is "Ask Freya!"

Expert system Ask Freya!

Expert system "Ask Freya!"


Ask Freya

To date, we have developed two parts of Ask Freya:


"Ask Freya, Part 1: Questions and Fragments"

Ask Freya, Part 1: Questions and Fragments

"Ask Freya, Part 1: Questions and Fragments"

"Ask Freya, Part 1: Questions and Fragments" is intended for care services staff. It has been elaborated in collaboration with Freya and she has approved all questions and answers. The user has the following main options:

Let us look at an example.

This is a fragment of the decision-making tree from the expert system "Ask Freya".

The following screen displays illustrate what the program looks like:

Vad har hänt?
Dialogrutan

The dialogue window reads as follows: Has Freya spit out her food,
thrown it up into the ceiling and started the fight?

Vad har hänt?

I dialogrutan står: From now on give her smaller portions.
We have agreed that she should keep her weight,
tell her that the sizes of the portions
will balance out in the long run.
Sometimes the portions are big and sometimes they are small!

The other main options are analyzed in a similar fashion.

The program also contains information about aspects of Freya which may be difficult to understand, concerning:

Sometimes Frejas thoughts get stuck

Under "Documentation", staff members can inform each other of their experiences. The system fulfills different functions for different categories of staff. It has proved a very good way for new employees to quickly get an idea of what is going on. For more experienced staff members, the most important function is that, on the one hand, it provides a structure for their own thoughts and documentation, and, on the other hand, makes it simple to share this information with others and learn from their successes and failures. Since many staff members are unaccustomed to writing, it is particularly valuable that even short, isolated notes are put into context. Finally, for a comprehensive evaluation of which methods are successful and which are pointless, the system is far superior to ordinary journal notes.

The parts of the program that Freya would like to make public will be made available on the Internet. This may further contribute to more people understanding more about Freya.

 

"Ask Freya Part 2: Freya Makes Progress"

This part is more explicitly intended for Freya herself. She has set up a program of development towards her life goal: becoming a scientist. In the program she is asked to comment on a number of statements and she can find out how far she has come in her development and how she can move on. Rewards are included. Examples of progress are saved and, at any given time, she can compare these with examples from a month or a year ago.

I want to be responsible for my own life

The most important function of the program is to:

As with the previous program, the parts that Freya wants to make public will be made available on the Internet. This may further contribute to more people understanding more about Freya.

Table of Contents



A Retrospect

The creation of the Elisabeth myth

Freya has spent several periods as a patient in the clinic where she presently lives. The most recent one has lasted about 10 years. There have been various diagnoses, but more or less all experts have made the assessment that she suffers from some kind of psychotic disorder. In an expert statement from 1977, one physician was of a different opinion, believing the problem to be a brain lesion.

Freya’s parents did not believe in the psychosis diagnosis and wanted to find other explanations. At the time, her father had already read Hans Asperger’s book from 1943 and suspected that the explanation all the experts wanted to force on them was not the right one. On her parents’ initiative, yet another examination began at the end of the 1980’s. It produced some results, which were published in the British Journal of Psychiatry (Wetterberg, Akner, Sääf 1988 and Wetterberg, Akner et al 1992). All the indications were that biological deviations were present.

However, the clinic stopped the investigation, claiming that such examinations were incompatible with the therapeutic process.

The clinic entrusted with Freya’s care and treatment acted on the basis of a description of her in which her psychotic traits were emphasized. Accordingly, it determined that her delusions and traumas should be treated with therapy.

A statement concerning traumatic experiences led to a search for possible traumas in her childhood. Her parents’ lives were scrutinized for clues. Some journal entries have ended up in her parents’ possession and they are amazed at how a number of statements about them and their lives have been interpreted in these entries. The way her father was brought up, his war assignment as an interpreter in the Second World War, and the brain tumor of a distant relative were looked at and were assumed to be the explanation of her trauma:

… her father is said to have received …
… a relative is said to have had …
… her father fought in the war …
… it can be assumed that some of his experiences may have affected his relationship with his daughter …
… thus, there are sufficient reasons to explain the present condition of the patient …

Vague assumptions were added to vague assumptions and from this it was concluded that a truth had been arrived at, which could form the basis for therapy. On the other hand, Freya’s parents, having read extensively on the subject, wanted to discuss a possible brain damage syndrome. Moreover, their attempts at having an independent inquiry appointed were treated with mistrust and were seen as unwillingness to accept responsibility for their daughter’s condition.

How can it be explained that, on the basis of loose assumptions and hypotheses, a description of a person is constructed which does not agree with her own image of herself or with that of her relatives? Freya and her parents were used as sources of information, but then only information confirming the clinic’s own theories was selected.

One explanation for such a procedure may be the cultural clash between two different ways of viewing knowledge— the positivist one and the hermeneutic one. The positivist view of science is the prevailing one in the medical field. All physicians and other health care staff are trained according to this theory.

In positivist theory, the scientist is viewed as an objective observer. He sees phenomena the way they really are. Since medicine is based upon data obtained by means of biological research, this forms the natural foundation for the creation of further knowledge and theories.

Psychiatry is also founded on this view, but in this field of medicine, psychodynamically oriented psychology with its hermeneutic theories complicates the picture. According to the hermeneutic view, the scientist is a subject with his own way of understanding and interpreting the surrounding world. When a physician meets his patient, he meets another subject who has his own understanding and his own interpretation of himself and his symptoms.

Natural science observes phenomena and searches for causal connections. This way of looking at reality is not easily transferable to the human field. In the biological individual, there are certain causal connections that have been established, while other connections are interpretations or hypotheses. In the field of psychiatry, a great deal of knowledge is founded on hypotheses, since the source of the knowledge is another human being, i.e. the patient. In this context, connections based on biology can be seen as knowledge which is probably true, with the caveat that new research may change this truth.

The psychological truth, which is the one created in the meeting between doctor and patient, has a much weaker foundation. Consequently, one must be very careful with one’s own interpretations. Sometimes, it is possible to observe a phenomena without understanding it. In the Striptease television program, Freya’s physician, Dr Ulf Lindewall, explains: "I was facing the problem of providing care for a patient the like of which I had never seen before [] I had no clinical associations whatsoever, but I still had to provide care for her…"

This physician honestly admits that he had never seen a person like Freya before and that he did what he could in view of his lack of understanding.

In the Swedish Radio program "Studio Ett" on August 29, 1997, another of Freya’s physicians, Professor Lisbet Palmgren, assumes that she has understood Freya’s need for education and explains it by saying that she knows that Freya likes to read books on various subjects and that she has been given instruction. Moreover, she does not think that Freya’s autism diagnosis should be taken into consideration when planning an educational strategy. In her discussion with Professor Gillberg, Professor Palmgren exhibits a lack of knowledge of education in connection with autism and an unwillingness to assimilate any knowledge which is not based on her own brand of psychodynamic theory.

If, as we have seen in the above, interpretations are made on the basis of material which is not clearly understood, there is a very great risk of misinterpretation. If the care and treatment provided is based on such weak premises, one must not dogmatically stick to one’s own interpretation, but rather one must be prepared continually to look for new facts and to reconsider one’s interpretation.

Upon observation, it is clear that in the search for the causes of Freya’s condition, the two research cultures have been confused. The doctor is the objective party - the doctor rather than the patient has the preferential right of interpretation. The patient is objectified, while, at the same time, according to the psychodynamic model, the patient is to be understood and interpreted from a subject-subject perspective.

The sentences in which it is stated that …her father is said to have received… …a relative is said to have had… …it can be assumed that …contain hypothetical data only. However, in the conclusion it is determined that: thus, there are sufficient reasons to explain the present condition of the patient

Other knowledge is available, but it is not made use of because it does not fit in with the established view of the causes of Freya’s condition. This knowledge includes the following:

This construction of knowledge has created a new reality rather than describing the existing one based on Freya’s own experience, her parents’ accounts and personal observation. It has also created the myth about Freya as an enigmatic, dangerous, aggressive patient, whose condition no medication or therapy can improve.

Freya’s parents’ suspicions concerning possible brain damage were not even taken into consideration to help bring out a more balanced picture of the patient. Earlier, even one of the psychiatrist had stated that he believed a brain lesion to be the cause of Freya’s condition.

Her parents say they were searching for confirmation of a brain lesion because they knew that they were not unnatural parents and that they were always looking for help to discover what was wrong with their daughter.

The psychiatric services have been obliged to provide care for the patient, but an understanding of the patient upon which to base that care has been lacking. It is natural to take as one’s starting point the parts that one understands based on one’s own view of the world and to overlook things which one does not understand. The result is that according to the view of the world prevalent in the psychiatric services, Freya is a total enigma.

 

Great anger

When Freya began to understand that the image the psychiatric services had created of her had resulted in completely inappropriate care, she felt great anger. She now understands that she is not an enigma, nor mentally ill. She has begun to see herself as one of many sharing the same psychological impairment — autism. She has come into contact with other people with autism, Gunilla Gerland for instance. She reads books about people like herself. She is able to see how her life can change and how she can develop without taking any new medication. Her great anger is expressed in many ways; she has written a threatening letter to one of her former doctors, for example. She believes that she has lost so many years of her life unnecessarily and she wants the people responsible to be punished.

Table of Contents


 

Freya - a patient pursuant to the Act on the Provision of Closed Psychiatric Care, or a person living on her own under the Act Concerning Support and Service for Persons with Certain Functional Impairments?

Freya’s fellow patient P

Freya’s fellow patient P

In the two earlier reports, we did not mention P, Freya’s fellow patient. One reason for this is the Swedish legislation concerning professional secrecy. Freya has chosen to come forward, while P has no reason to do so. Consequently, it has seemed like Freya was living by herself in Villa 39. In actual fact, we have had a double task with an indistinct mix of education, adapted to a person with autism, as well as psychiatric care. P remained in the project just because he was living in the house. Only a few years earlier, an addition had been built to the house to accommodate him. It would be difficult to move him to a different institution and we believed that his case needed further study before any definite decision could be taken about his future.

P, too, gradually developed in such a way that he required more and more from the staff. He also needed constant attention and wanted a greater say over his life. The result was that, in the summer of 1997 we reached a limit where it became obvious that the two types of care were incompatible and would have to be split up. The project would continue to be based on education in an autism context. The other part would consist of psychiatric care with P’s psychiatric diagnosis and care needs as the starting point.

 

Education moves into the Psychiatric Care Services

Over the last few decades there have been major changes in the psychiatric care services. New care ideologies have lead to a reorganization in which the large mental hospitals have been divided into smaller units. According to present-day care policy, patients should be integrated into the community, live in their own accommodation, and have greater influence over their care.

This kind of complete change of approach means that all staff have to change their way of thinking. It is an extremely difficult process to change the set thought structures of such a large number of people.

When looking at the psychiatric services as an outsider, one cannot help but notice the large discrepancy between the theoretical research and the clinical reality in this field. A majority of articles in psychiatry journals take a positivist/natural science approach. Genetics and neurology are the main branches of learning referred to in these articles.

According to Bengt-Erik Eriksson (Hur skall själen läkas. Förändringar inom den psykiatriska vården, Natur&Kultur 1997) the divide between theoretical science and practical care is widening at the moment. He believes that psychiatric care at the clinic level is developing largely independently of the scientific research in the field.

Eriksson thinks that "a systematic study of the complicated relationship between science and care in the field of psychiatry ought to be of fundamental interest from the point of view of the history of science as well as from the point of view of care policy."

When one looks at the clinical reality in psychiatry, it is striking how much scope is given to auxiliary disciplines such as psychology and psychoanalysis. Psychotherapy has a fairly short history in psychiatry and has consisted of various, often irreconcilable, theories. Despite its wide use in psychiatric care, there is little research and documentation on the subject.

This is also true for one of the greatest challenges of psychiatry — Elisabeth/Freya. She has received extensive, costly therapies, which ought to have been well documented and evaluated, but this has not been done. Gaetano Benedetti has written a few short fragments in one of his books. In these, he expresses his subjective feelings about his patient, but does not help solve the puzzle.

This case ought to have been the best documented in modern psychiatry, but the only documentation available are subjective assessments indicating an inability to cope.

When a new discipline, education, entered the psychiatric care services and redefined the enigmatic patient, initially it lead to confusion. Then it was ignored. Because it was something that had been imposed by the Disability Care and Habilitation Services Board.

The psychodynamically oriented therapy that Freya had been given alongside the special education adapted for autism until June 1996, was just as incompatible with education as with the biological examinations which had been interrupted ten years earlier. Staring blindly at fictitious childhood traumas meant that all other approaches became impossible.

When Freya was given an opportunity to formulate her own identity, her self-image changed completely. She was no enigma, but one of many with the same kind of disability. The thought of having a life-long disability did not overwhelm her. Instead, she could see possibilities for learning how to live with her disability and that her life could move forward in a new way. For the first time in a long time, she was given hope.

The project created around Freya in connection with the reorganization welcomed education as a method. On the other hand, it came as a surprise to the psychiatric care services that educational methods would involve so many changes.

It took a long time for the new organization to understand what was needed for the project to work.

The following problems needed solving:


From closed psychiatric care to her own accommodation?

Villa 39, Långbro

Villa 39, Långbro

When Freya was re-diagnosed and the psychiatric care services acknowledged her autism diagnosis, the South Stockholm Healthcare District preferred to keep her in the psychiatric care services. A reorganization was underway, in which the activities of the Disability Care and Habilitation Services Board were first transferred from the County Council to the local social services area and were subsequently divided up among a number of district neighborhood committees. It seemed unsuitable to transfer responsibility for Freya’s care to another principal during a period of reorganization such as this.

When the reorganization was complete and it had been determined which municipal local social services area would be given responsibility for Freya, the question of which individuals would be in charge remained unanswered and still has not been settled. The main reason for this is that the administrators who were put in charge of implementing the Act Concerning Support and Service for Persons with Certain Functional Impairments needed time to adjust to their new tasks before they would feel able to make a decision regarding Freya.

Planning meetings were held at regular intervals with representatives of the psychiatric services, adult rehabilitation and the administrators responsible. These meetings were initiated in order to discuss the transfer of responsibility for Freya’s living arrangements to the municipality.

She is still considered as something of a unique case, to which the Act may not apply, particularly by those who are not familiar with autism. However, my experience of how these matters are organized in the municipalities around Stockholm is quite different. My knowledge of the field of autism has also made me aware of the fact that there is a fairly large number of individuals like Freya. I have never considered her an enigma.

Freya has been sentenced to closed psychiatric care, and at present this prevents her from moving to a different type of housing. The sentence was not imposed because she has committed a crime, but rather because, in 1992, a change was introduced to the legislation concerning patients in compulsory psychiatric care.

To keep Freya in compulsory care, her commitment was changed to a legal sentence. The special indications required for compulsory care with no sentence imposed were as follows:

Several of these indications clearly apply to an individual whose disability involves an inability to control impulses, bad judgment in social situations, and difficulty planning her daily life.

Most individuals with cognitive disabilities and/or autism who were being treated by the psychiatric care services at the time when the 1986 Act Concerning Support and Service for Persons with Certain Functional Impairments entered into effect were discharged and became the responsibility of the municipalities over the years following the introduction of the Act. According to the Act, these individuals should belong to the "circle of individuals" under the Disability Care and Habilitation Services Board and should be provided individual housing and a daily program of activities in group homes and day centers.

At the time, Freya had not yet been diagnosed as autistic and, consequently, could not be discharged.

The objectives are the same in the new Act of 1993 – individuals with lifelong functional impairments must be provided with residential arrangements outside the psychiatric care services unless they have additional symptoms of a psychiatric nature which can only be treated with psychiatric care.

In case Freya’s case, a consistent educational program is needed to help her develop.

The only thing the psychiatric services can do for her is to prescribe the medication she has been taking since 1979. Moreover, she would like to try a new medication which is difficult to obtain and she sees her present doctor often to discuss this.

In order to find out what the situation was really like regarding the issues we had been discussing concerning Freya, I sent out questionnaires to eight group homes and one special school in June and August. The most important question that I needed answered was: Is she unique with respect to costs, violence, impulsiveness?

The following is a summary of the answers I received from the questionnaire and from a few study visits.

Living arrangements of other individuals diagnosed with autism

The answers to the questionnaire reveal that the work carried out in these group homes requires both the outer and the inner environment to be specially adapted. Usually, the homes are located far from cities and towns. Group home D is an exception. It is located in a subdivision within walking distance of the subway and a shopping center. The residents in this home are not prone to violence.

All the group homes require high levels of staffing. This type of residence is costly for other reasons as well.

There is a constant threat of violence in all of the homes except one. Even homes where all residents are able to attend daily activities at another location have some problems with violence and impulsiveness.

All except one have problems with locking doors, property damage, residents escaping, etc.

They have chosen somewhat different ways of solving these problems.

The individuals who live in these group homes are all adults. A large number of them have spent years in closed psychiatric care. One young man has suffered a fate similar to Freya’s, in being strapped down for close to four years in a large mental hospital.

A clear structure is a necessity and openness and transparency on the part of the staff is vital. The following points were considered particularly important:


Group home A

Four adults between the ages of 25 and 40. Three men and one woman. Only one has been diagnosed with autism only. The others have additional disabilities such as cognitive disabilities and epilepsy.

The home is in a large, detached house on the edge of a hospital area. On one side of the house there is a forest and on the other side is the Hospital Park. In front of the house is a large raised patio.

At present there are 17 staff members, two of which have night duty.

The job requirements are openness and transparency, which ranks higher than education or any other asset.

Violence is always a possibility, since all residents are very much controlled by their impulses.

When the home opened, there were approximately 100 notifications of damage every month. After replacing the staff and introducing new working methods, the number of notifications per month has dropped to about three.

In-house, specially adapted training alternating with individual guidance every other week.

All staff members are present at the same time for 3.5 hours per week.

The annual cost is 1.5 million kronor (ca $200,000) per person for accommodation plus 525,000 kronor (ca $65,000) for daily activities within the group home. However, some residents are being introduced to activities at day centers and other types of activities.

 

Group home B

10 individuals who have been diagnosed as autistic, one individual with a different diagnosis and one individual whose treatment in the psychiatric care services has been completed.

Two individuals are particularly difficult to care for and have the constant attention of one staff member each. They share a separate house with special arrangements of various kinds.

The two houses are located far from other residential areas.

The home provides accommodation as well as daily activities.

Three individuals live outside the group home itself in the closest town. They have their own apartments, but need assistance from the group home staff.

Staff: 20 full time positions, 10 part time. The residential side and the activity side have separate managers. The rest of the staff members care for the residents.

Violence used to be a daily occurrence, but is now described as "a common, but not daily, occurrence".

The annual cost is 824,000 Swedish kronor (ca $100,000) per person. This is the average cost and includes everyone from the least disabled individual living on his own to those who require extensive care.

 

Group home C

Twelve individuals live in the group home, while one person attends the daily activities only.

Not all of the residents have been diagnosed as autistic, but they all have severe behavioral problems.

Most of them (9) have spent between 12 and 40 years in closed psychiatric care.

This group home was established by the Disability Care and Habilitation Services Board when the 1986 Act provided that all individuals in the care of the psychiatric services belonging to the "circle of individuals" of the Board should be discharged and be provided with residential arrangements and daily activities adapted to their needs.

Violence is a daily occurrence, but is gradually diminishing as the individuals feel more secure.

The front doors must always remain locked because some of the residents are very impulsive.

There are nine full time employees assigned to the daily activities and 26 employees work in the residential section.

In addition, there are 8 employees working 75% of full time, 12 working 65% of full time at night and 4 working 50% of full time. All of these are employed in the residential section.

There are individuals who from time to time need personal assistance around the clock. At present, there is one man who for the last six months has been attended to at all time by a male nursing assistant.

Cost: The annual cost for the twelve residents amounts to 15.5 million Swedish kronor (ca $2 million). The cost for the non-resident is 1.3 million ($160,000).

 

Group home D

Four individuals with autism live in a couple of townhouses in a subdivision. Each resident has his own apartment consisting of a bedroom, a living room, kitchen, and bathroom. In addition, there are communal areas for social interaction.

Two of the individuals have severe behavioral disorders. One also has a cognitive disability.

Violence occurs frequently, but not on a daily basis. The doors are kept locked because some residents are very impulsive and because there is a great risk of theft.

All residents attend daily activities outside the home. Three of them attend the same special activities for people with autism. The fourth works in a shop, which is connected to a day center. They are away from home between 8.30 and 3.30. Two of them use the transportation service; two travel by public transport.

There are 6 nursing attendants working in the home.

One resident is particularly difficult to care for and needs constant supervision.

Cost: Staffing costs amount to 1.8 million kronor ($225,000) per year. In addition, there are expenses for the premises, for travel by taxi, and for the daily activities.

 

Group home E

Four individuals with autism. All with severe behavioral disturbances.

Violence occurs frequently, but not on a daily basis. One person is controlled by impulse to the extent that all doors have to remain closed. He requires constant attention by a staff member.

Three residents have their daily activities on the premises. The fourth leaves the home for activities elsewhere.

Staff: 8 full time positions and 8 part time.

One individual requires a personal resource provider during the day (8.00 – 4.00).

The preliminary cost estimate for 1997 is 1.2 million ($150,000) per resident.

 

The Special School

This is one special boarding school for the whole country. Students are admitted up to the age of 21.

The students have disabilities such as DAMP, ADHD, autism/Asperger. All of these disorders cause severe behavioral problems and, consequently, the education of some of the students at the school is very costly

The following is an extract from a letter from the school:

"At present, we have five students with personal staff members assigned to them. Three of these live in the same residence. Three staff members are assigned to each of these students. This means that they substitute for each other when one of them is sick or is away temporarily. They are compensated by working shorter hours while receiving a full time salary.

The other two live in another residence. One of them has six staff members assigned to him, while the other one has three. These staff members also alternate.

All staff members work in the residential section as well as in the daily activities programs. Some staff members have night duty.

The cost for the residents assigned three staff members is approximately 3,700 kronor ($460) per 24 hours for the residential arrangements and the daily activities/school. The cost of the student assigned six staff members is 7,000 kronor ($900) per 24 hours.

We do not have any group homes as such. However, we do have nine adults who have not been able to move back home after finishing their schooling. These adults live in our various residences.

Various forms of violence are a daily occurrence. We are reconciled to the fact that violence is part of our day since it is the only way for many students to express their discontent or anxiety. Our way of preventing violence is to structure the day as carefully as possible and to make only reasonable demands on our students […]. We also have students who are controlled by impulse to the extent that they are unable to have open doors. We are dealing with this in various ways…"

 

Group home F

Eight individuals living in 2 houses. Each resident has his own apartment with two rooms, a bathroom, and a small kitchen.

All of them do not have autism, but six of them have severe behavioral disorders.

Violence occurs frequently, but not on a daily basis. There is no resident who is controlled by impulse to the extent that the doors have to be kept locked. The home offers a combination of residential arrangements and daily activities.

Number of employees: 12 full time nursing assistants, 8 part time nursing assistants, and 2 working in the daily activities program. In addition, there is a director and assistant director and a group leader.

None of the residents require a personal assistant.

The annual cost per person is approximately 800,000 kronor ($100,000).

Table of Contents


 

Freya’s Future

Freya, her parents and the staff are hoping that her sentence will be lifted and that she will be able to move from her specially built house and from the closed psychiatric care where she has spent her entire life since the age of 12. The psychiatric care services are not able to provide suitable living arrangements and her future ought to be elsewhere.

Freya has come to realize, given her age and her very difficult life, that she no longer wants to live with other people with psychological disabilities. She wants peace and quiet. She does not want to be disturbed by anyone and wants to think only of her own wellbeing.

The following is her description of the life she would like to lead (the text has been edited by Eve Mandre):

I had not realized before that I need to get a house of my own. It would be sufficient to have a bedroom, a bathroom and toilet and a living room. Then the staff need one room and a kitchen. I also need a large garden or a forest around the house.

A brick house would be best because it is more durable. I am afraid that there may be a fire in a house made of wood. The smoke kills you, before the fire can reach you. A brick house would be safe in that respect.

I have a good idea for how to deal with my impulses. A specially trained dog to help me when I have impulses would be good. In that case, the food would not be a problem either. I don’t like Doggy or other kinds of dog food. It would work out fine.

It might be possible to reduce the number of staff as well. Everybody always worries about money…

Dogs are more useful than a goat. It just costs money and it is not good for anything.

Impulse dog

Freya with her impulse dog

Freya’s own ideas should not be impossible to realize! She is aware of the fact that she will always need personal assistants or nursing assistants. She needs to live in the countryside in a house that she can feel is her own. There, she will be able to forget years of terror and to live surrounded by nature, with her impulse dog and her assistants … Hopefully her dream will soon come true!

Table of Contents

Free Freya, Part 1. Before Becoming Computerized
Free Freya, Part 2. Explosive Development