Part 2. Explosive Development
Eve Mandre and Bodil Jönsson
|Translation: Anna-Karin Batcheller|
Appendix: A Physics Lesson for Freya taught by Bodil Jönsson.
Free Freya, Part 1. Before Becoming Computerized
Free Freya, Part 3. A year of education in the psychiatric care services
We assume that the reader has read "Free Freya part 1, Before Becoming Computerized". In the introduction to that report we wrote:
"The effects of Freyas computerization can be seen even before its actual inception. The preparatory work has given rise to a focused discussion, and Freyas parents are hoping that these discussions will lead to a treatment plan for Freya. In any case, a report of this kind ought to be written - there are many things in Freyas life which need to be made visible. The report may also be useful in view of Freyas relocation which will take place within the next six months."
As can be seen from this excerpt, we were hopeful. Our prayers have been answered to an extent we had no idea might be possible.
In this report we will describe and analyze just how our prayers have been answered, first in Step 1 during the period February - May and then in Step 2, the 47 days beginning on June 1, 1996. The reason we are co-authoring the main part of the report is because we have been each others co-worker from a distance during the whole process, as a partner in a dialogue, inspirer and interpreter. Freya has read and commented on everything and supports what we have written. The written documentation for the report comprises not only about a hundred pages of letters and faxes between the two of us from the period between February and August. There are also many letters from this period between Freya and Eve, and Freya and Bodil.
Free Freya part 2 is also our own and Freyas way of thanking all the brave and decisive people from the South Stockholm Hospital District who dared to trust Thomas Turtola and Eve Mandre and thereby, in effect, freed Freya: Eva Odenberg, Janusz Kedzior, Lena Karlsson and Carita Mandelin.
Stenshuvud, August 1996
Eve Mandre Bodil Jönsson
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|1991||Freya, 36, is diagnosed with autism
Special education for adults with Eve Mandre
|1993-1994||Three years go by.
Considerable progress is made, but with the existing thought infrastructure it is impossible to get any further
|Certec develops Isaac|
|1994||Isaac test use begins|
|1995-1996||The project "Isaac Starts School" supported by the Swedish Handicap Institute, the National Agency for Education, the State Inheritance Fund, the National Childrens Fund, Malmöhus County and others|
|Fall of 1995||Eve Mandre attends a Professional Day organized by CERTEC and Framtidens Skola (Monica Englund)|
|Fall of 1995||Eve contacts Bodil regarding possible technological help for Freya|
|November, 1995||The preliminary project "Free Freya" is drawn up||The foundation "Frejas fond" supports the introduction of technology into Freyas life|
|January-February, 1996||The installation of the computer leads to the loosening of a fixed thought infrastructure and spatial infrastructure|
|April 1, 1996||The project "Villa 39" is drawn up and
approved by the Psychiatric Board. Education takes over from psychiatry
The Swedish Handicap Institute supports the "Free Freya" Project
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Freyas life has been dramatic in many ways and she has been subjected to numerous therapies by a large number of experts. What has been published about her up to now? Surely, such an enigmatic case must have been the subject of documented research? When we started looking we found less than we had expected. As can be seen from the list of references, only three different approaches have been documented and published.
Freya and her former therapist, who now lives in Italy, still correspond. Professor Benedetti has documented the therapy Freya went through in his book "Alienazione e personazione nella psychoterapia mentale". He also mentions Freya in his book "Der Geisteskranke als Mitmensch" in the chapter Warum wir den Geisteskranken lieben.
"One of them had been psychotic since she was a child and, over the years, she had been diagnosed as having several different disorders: infantile symbiotic psychosis, a schizophrenic disorder, etc. Now, her condition was considered to be some kind of early autism. She had always been very aggressive; she was anorexic and extremely obsessive. Since childhood, she had received treatment in various institutions and special hospitals."
In the chapter "Livskvalitet" (Quality of Life) she describes Freyas life beginning to change for the better:
"The patient who was kept in a small special unit is still there. But in every other respect her life has improved radically. Previously, she was dressed in rags, since she would rip up her clothes. She used to throw excrement and left-over food all over her room. Now, she is nicely dressed and very proud of it. Her accommodation is more pleasant, she has a good relationship with the staff and is able to go out for walks with them. In addition, she has two fellow patients in her ward. Previously, she was almost always alone and would attack people who approached her. Now, she spends most of her time in the company of others. She is very interested in the world around her and thirsts for knowledge, and she receives instruction in a number of subjects, such as, languages, history, geography and religion. It remains uncertain, however, whether it will be possible to discharge her anytime in the future."
In Vol. 161, 1992, the same scientists, with KH Gustavsson, E Håkansson, H Kiessling and A Yuwiler, published the article Chromosomal Aberrations in a Patient with Severe Psychopathology.
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The first printing of the report consisted of 200 copies, which we thought was a reasonable number considering it was a "to-date" account prior to Freyas computerization which was about to take place. Our main report was going to deal with her computerization and its effects. However, it soon became apparent that we had underestimated public interest in our report. We received orders from the Psychiatric Care Services for Adults, from day centers and schools and had to print another 800 copies in several printings. We had many letters and phone calls from readers who told us that the problems described in the report were familiar to them.
Lena Nylander, senior physician at the Psychiatric Clinic at Lund University Hospital, wrote to Bodil Jönsson:
"I am also exploring the area of psychiatry and autism and I think it is wonderful that there are others who are doing the same. At least partly, the problem is that, just like in the case of Freya, there are probably many people who are receiving psychiatric treatment who have autism, but for whom this diagnosis has not been made. At the same time, it seems that it is quite common for a patient to have autism as well as some kind of psychiatric illness. In adult psychiatry, it has generally been believed that an adult cannot have autism if he has not been diagnosed as a child and does not have a developmental disability. However, it is probably the case that most adults with autism were not diagnosed as children."
The letter continues:
"As you know, it is impossible to treat autism, that is, there is no known way of making it disappear. As you also know, there is a tremendous amount that can be done to make life easier for the individual with autism, if you know something about the disorder. This is where educators can play an important role. Moreover, I believe that psychiatry would benefit greatly if educators were brought into the team."
Many of our readers tell us about individuals who are much like Freya. For example, Marie Cosmo-Sönnerfors, assistant principal at Dammsdal School, writes:
"I have just finished reading your and Eve Mandres book "Free Freya". I was completely fascinated by the work Eve is doing. We have a student at our school who is like Freya in many respects, and much of what is described in the book reminded me of her."
As a result of this letter, Eve and Thomas Turtola went to Dammsdal School to meet the staff and discuss educational and practical issues concerning their student. This and other similar meetings made Freya appear less unique, rather she became one member of a special group of individuals with autism who share certain difficulties.
Karl Grunewald wrote to Eve:
"Once I had some peace and quiet, I devoured your report about Freya. An incredible story of accumulated omission. Your effort is quite unique. You must set up a new type of housing for Freya. Obviously, this is the only right thing to do."
Gunnar Akner, assistant senior physician at the Karolinska Hospital in Stockholm was involved in an earlier examination of Freya (see Bibliography). He wrote as follows:
"I want to express my great appreciation and support for your pioneering work with this patient. Your report is well-written and provides an objective summary of these serious psychiatric problems. The hypothesis that by becoming computerized, the patient will acquire a certain amount of autonomy and power over her life is very interesting and well worth trying."
Karin Axeheim from the Special School in Trelleborg expressed her thoughts about psychiatry and autism:
"The psychiatric perspective tends to be an "illness perspective" - autism is not an illness. Autism is a disability. In my view, ill means well-ill-well again. Being ill means being in need of treatment. Autism is a mental disability and what is required is quality of life (home-school-recreation). For a long time, the illness perspective espoused by psychiatry resulted in the construction of institutions for individuals with cognitive disabilities and autism. In practice, these institutions consisted of "housing" with an in-house therapy and habilitation department, that is, housing, work and recreation in the same location." Karin also emphasizes the importance of teaching. "When the diagnosis has been made, it is the task of teachers to stimulate the development, growth and independence of the individual in question. What is needed is an educational approach encompassing special education in several subjects, including technology. In addition, we need a special curriculum."
By now, many people in the fields of psychiatry, autism and education had come to understand that our work with Freya was something quite unique and that continued documentation and development were needed. The Swedish Handicap Institute had received the first report and provided a grant to CERTEC to allow it to continue working on and documenting the project. CERTECs aim was "to support the work on pedagogy in psychiatry through the on-going development of Freyas computerization and by contributing to the creation of an expert system about Freya, her dreams, wishes, needs and abilities, under the working title Ask Freya".
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When Freyas computerization began, discussions were in progress concerning a reorganization of the psychiatric care services and how this would affect Freyas clinic. The computerization and the reorganization went ahead independently of each other. Everything pointed to the clinic being closed and the patients "requiring the most care", including Freya, being transferred to another clinic. There was no real alternative to this.
It is true that because of her autism diagnosis, Freya now belonged not just in the psychiatric care services but also to the circle of individuals of the Disability Care and Habilitation Services Board. This entitled her to special education for adults. In addition, her parents were receiving counseling from a psychologist . But these initiatives were not enough to bring about radical change.
Freyas special education teacher, Eve Mandre, had clear intentions and ideas about comprehensive changes. But her every attempt at inducing change were met by the clinic management arguing that the conflict between Eve and Freyas therapist first had to be settled. Since this conflict could not be resolved - it was about completely opposing interpretations of reality - the situation was bound to remain as it was.
Freyas computerization became the catalyst. CERTEC, Center for Rehabilitation Engineering Research at Lund University, frequently claims that the introduction of technology can function as a probe. As something which makes things visible and initiates new processes. And that is exactly what happened. But not at all in the way we were expecting.
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Nothing controls development more than an established thought infrastructure. We, too, were tied down by prevailing thought. The existing system was not built for development. It was about supposed dangerousness and humane institutionalization. It had been established that Freyas identity was dominated by one single characteristic: dangerous!
We played along with this by laying the foundations for computerization where the monitor and the computer were located behind unbreakable glass in Freyas room (Freyas cell), and where the keyboard and the glidepoint had special features, special anchoring in a huge table, etc. The basic idea was to enable Freya to break out of her isolation by making contacts via fax through the computer, and that, otherwise, Freya and the computer would be working together on their own.
This was probably a necessary approach; otherwise it would not have been possible to do anything at all. But as soon as the computer was there, Freya allowed Eve Mandre, Thomas Nilsson, Thomas Turtola and other nursing assistants to come into her room. Sometimes, they were even allowed to sit on the edge of her bed. The door to the living room could stay open without any serious incidents. It took only a couple of days for this development to generate a new thought process in their minds: perhaps it is totally wrong to view the computer as a tool for Freya to use in solitude. Perhaps we could all sit around the computer? Perhaps it could become a physical meeting place in the living room?
The first result of the physical arrival of the computer was that it became the start of physical closeness between people. Subsequently, this physical closeness has evolved (cf. especially the descriptions under "The 47 Days").
For example, it turned out to be not only necessary but possible to deal with Freyas kicking. Eve Mandre introduced the metaphor of the legs becoming "electrified" and needing to be "de-electrified" at regular intervals. Freya allowed this, and the kicking decreased dramatically. Gradually, having a hair cut or a massage, and going for car rides became possible, as did sitting close to several people in a room. None of this would have been possible without the probe which was the computer.
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The fact that nothing controls development as ruthlessly as an established thought infrastructure is true for housing as well. What possibility is there for dealing with danger if everything, everything, everything you see around you is a constant reminder of your danger to others? How can you deal with toilet problems, personal hygiene, and general grooming if the only drain in your room consists of a hole in the floor connected to the public sewage system? How can you lead an outdoor life if all you have access to is an exercise yard with a giant fence? What are your opportunities for development if you do not have a room where you can spend time with others? What does the structure of your space consolidate and stimulate in you?
As soon as the computer figuratively and literally had opened the door, the staff at the clinic realized that the room outside Freyas room could be made into a living room.
This room adjoins Freyas and covers about 25 m2 (300 sq. ft). It has a set of wall bars, two park benches attached to the floor, a basket for playing basketball, and two armored-glass windows. When the house was built, specially for Freya, the intention was that Freya would occupy herself in this room and use it as a living room. However, it has never been used as such, but has become a store room for all kinds of unusable things which nobody wants to throw away.
As soon as we began to think about using the room as originally intended, it became obvious that this was where the computer should be located. It was also clear that it could not just stand on a table but had to be built into a solid, lockable cabinet. We also knew that our requirements with respect to durability and quality were so strict that it would be impossible to find a ready-made one. Thomas Turtola had to make the cabinet himself out of materials available among various unusable things. These included the bed previously used for strapping Freya down. It had been specially designed and manufactured from a 40 mm (1 ½ " ) thick sheet of plastic laminate and steel pipes. It is heavy and cannot be lifted by one person alone. A thirty-year-old wardrobe made of solid wood was sawed into parts and redesigned to make a cabinet for the computer. In a lockable door, Thomas fashioned an opening of a size suitable for the screen and a window of unbreakable glass. The cost of this specially designed and very functional cabinet was 250 kronor (approx. $35).
When the cabinet was finished, and Freyas empty room was being filled with more and more things, we saw that she needed a wardrobe where she could keep her clothes and shoes and other things for which there was no room in her bedroom. It was to be placed in the living room, to be lockable, and Freya was to have the key to it herself. In that way, she would have to leave her room to go and get what she needed, when she wanted to. All lists such as the ones described in Free Freya part 1 were to be replaced by one single important direction for everyone in the house to follow:
"Freya now has most of the things she needs in her own room or in her wardrobe! If she needs something, she will tell you. Always trust her when she asks for something!
It is not the end of the world if she gets one wash cloth too many or a little too much cleaner.
Always trust your judgment and remember that Rome was not built in a day!"
Despite the fact that the living room is not very big and that people walk through it to get to the laundry room, the garbage room, and the utility room with the water and electricity controls and the pressure-washer which previously was used to clean Freyas room, we could see that the room has possibilities. Rooms can be changed and rebuilt - if people are able to rethink things and create something new based on existing conditions. Thomas provided an example of this kind of thinking:
Strap bed + old broken wardrobe = functional computer cabinet
Sometimes creativity is a greater asset than money!
Freya, too, has started to put forward ideas for how her new needs can be met. She thinks that she has wasted too large a part of her life pointlessly pacing beside high fences and now wants to do something more enjoyable and useful. Since she is still afraid of gaining weight if she sits still, she has asked for a trampoline for the living room. If she gets one, she can jump for a while if her thoughts about gaining weight become too intrusive. Freya has also started to remember activities she enjoyed as a child, playing cards for example. We have bought a deck of cards and used it in the countryside on one of our excursions. Now, Freya wants to play cards at home as well, during rainy fall evenings and cold winter days. This means that we need to make a card table!
Freya has started to sew. She makes dolls clothes; she wants to make a new swimsuit, a quilt, a mattress Each finished item provides her with new ideas and her pacing back and forth along the fence is beginning to feel like something belonging to an era long past. These are Freyas own comments on those years: "I have wasted so many years of my life pacing back and forth. Now I want to do things that are fun!" Then she bends her head over her sewing again, and needle and thread quickly slide through the fabric and soon she has made another useful thing for her living room which used to be so bare.
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As soon as the head of the ward at Villa 39 (Freyas specially-built house) had read the preliminary draft of "Free Freya part 1", he let it be known that he wished to be part of our efforts to try to create a new life for Freya. The overwhelming transformation process which ensued gave rise to strong emotions in everyone involved and it was a difficult time for those who participated in this process.
Thomas describes it as follows:
"Actually, it was when Eve started talking about Bodil and about Freya becoming computerized that I began to understand that there were other people, apart from Eve, who were able to see Freyas abilities and potential for development. At the time, Bodil had not even met Freya, but she was not afraid to put her faith in her. Moreover, Freyas computerization gave Eve and myself an excuse to discuss Freya more informally. The computerization and the reorganization of the care services more or less coincided and, at the time, there was talk about moving Freya to a special hospital far from her home town.
I have known Freya for almost 20 years, and I knew that such a move would be detrimental to her, since even her specially built house affords a certain measure of security. My discussions with Eve about Freyas computer grew into dreams for Freyas future. We could see that she had progressed, and we had ideas.
I knew that for us to even get an opportunity to discuss her future with the management of the South Stockholm Hospital District, fresh ideas and new content in Freyas care would be required. Eve and I developed ideas, sent each other fax messages night after night, and then I made an appointment for a discussion meeting. We had a relatively unbiased discussion about a de-psychiatrization of Freya. Freyas physician did not attend the meeting, since the discussion was about a transition from psychiatry to education. In addition, the fact that Eves and the physicians interpretations of Freya were totally irreconcilable had made it impossible for them to draw up a plan together for Freyas future.
In the course of the meeting plans for a project emerged, and Eve and I were given the task of writing a project plan within two weeks. Our fax machines were running hot every evening and night and gradually the project plan took shape.
The plan was adopted by the Psychiatry Committee, where both the administrators and the politicians gave us their full support. We thought we could breathe a sigh of relief and put forward our plan to my colleagues. Rumors were going around that there was something going on, but we couldnt reveal anything until a decision had been made. In these types of situations people often give in to their worst instincts and the following weeks were difficult for me, a defector from the prevailing system.
The time between the decision to accept our plan and the integration into a new organization was a stressful time for Eve and me, and a time of worry for the other staff members and the patients.
As a first step in the new project, I took charge of personnel administration and financial administration, and took on more responsibility with respect to medical decisions. We no longer had an in-house physician, but a doctor who was available for consultation when needed.
In June, once Eve had taken up her position, we would be able to begin transforming Freyas image, both our image of her and, perhaps most importantly, her self-image. Naturally, we didnt imagine that Freya would change over night, but we had laid the foundations for continued development."
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Eve Mandre wrote the plan which she and Thomas had drawn up by faxing ideas back and forth. When the plan was put before the Psychiatry Committee, it represented the first real alternative to moving Freya to closed psychiatric care at a different location. The Psychiatry Committee adopted the plan on April 1st, and it certainly was no April Fools joke, but a decision to radically change the whole care structure. The basis of the project can be summed up in the following words:
That is, not on psychiatry, not on psychodynamics, but on pedagogy. Moreover, the choice of Eve Mandre to head the project also meant that the South Stockholm Hospital District was taking a stand: an educator had been chosen as head. The clinic still had a physician responsible for the patients as well as a senior physician, but their role was that of consultant: they were available to help out when necessary.
The project plan, in the version adopted by the Psychiatry Committee, is reproduced on the next three pages:
|STOCKHOLM COUNTY COUNCIL
HOSPITAL DISTRICT April 10, 1996
Head of Basic Unit
Project Description "Villa 39"
At present, three patients with very difficult care requirements are being cared for in "Villa 39" at Långbro Hospital.
On April 1, 1996, the Psychiatry Committee of South Stockholm Hospital District decided that the work on the future of "Villa 39"will be done as a project. It will be a collaboration between the psychiatric services, those responsible for the implementation of the Act concerning Support and Service for Persons Certain Functional Impairments, and the habilitation services. One of the patients also receives special education for adults.
The work will be based on pedagogy and the model used will be TEACCH (Treatment and education of autistic and related communication handicapped children). This method has been used in Sweden for a number of years and has proved to considerably improve social ability and functioning.
The objective is for the patient to be able to function, develop and improve her quality of life. The model is based on a structured environment and structured daily activities. The project may include 3-4 patients with mental and neurological disabilities.
The Disability Care and Habilitation Services Board has experience of structured educational methodology and there are group homes and day centers which operate in accordance with to these principles.
Since this will be a pilot project involving the psychiatric services and habilitation under the Act concerning Support and Service for Persons with Certain Functional Impairments, which will be founded on pedagogy , it is essential that the project be followed up by research and continuous evaluation through a research project conducted by the Special Education Department at the Faculty of Education at Stockholm University. Dr Britta Alin-Åkerman will be in charge of this part of the present project.
The project leader, who herself is associated with the Special Education Department as a postgraduate student and as a lecturer, will develop a program of education for the staff concerned, in consultation with the above-mentioned department and the Autism Association.
The staff which will take part in this project should have a suitable educational background in nursing and the caring professions, for example training as nursing assistants. As daily occupational activities will be part of the project, it is essential to include staff with special skills in areas which we consider important in this regard.
The treatment provided will be based on structured daily activities. In the initial phase, it is vital to enhance the patients ability to communicate, improve her confidence and her knowledge of the world around her.
Creative activities, such as painting, music, dancing, and movement will be important to the achievement of these objectives.
|STOCKHOLM COUNTY COUNCIL
HOSPITAL DISTRICT April 10, 1996
Head of Basic Unit
Meetings pursuant to the Act on Co-Determination at Work will take place on May 9, 1996.
The implementation of the plan will begin on May 15, 1996.
The project leader will be employed on a one-year contract from June 1, 1996.
The project team will begin their work as soon as possible.
The project will report once a month to the management of the closed psychiatric care services.
The first evaluation should take place on November 1, 1996 at the latest. The evaluation results shall be reported to the Psychiatry Committee of the South Stockholm Hospital District.
Filipe Costa, senior chief physician
Tadeusz Sielski, physician responsible for patients
Carita Mandelin, responsible for the project
Eve Mandre, project leader
Thomas Turtola, administrator
Information to be provided to:
The Psychiatry Committee of the South Stockholm Hospital District
The Psychiatric Care Services Executive
The labor unions concerned
|STOCKHOLM COUNTY COUNCIL Information
Document (Act on Co-Determination at Work)
HOSPITAL DISTRICT April 26, 1996
Nursing and Rehabilitation Unit
Reorganization of the Fruäng Clinic - Villa 39, from May 15, 1996.
Villa 39 is a unit for 3-4 patients with very difficult care requirements. As a basic unit, the Fruäng Clinic will close on July 1, 1996.
Villa 39 will continue to operate as a project in accordance with the decision taken on April 1, 1996 by the Psychiatry Committee of the South Stockholm Hospital District.
The project is a collaboration between the psychiatric services, those responsible for the implementation of the Act concerning Support and Service for Persons Certain Functional Impairments, and the habilitation services (see annex).
In addition, Villa 39 will become part of a new organization,
Senior chief physician Filipe Costa
Responsible for patients Tadeusz Sielski
Project manager Carita Mandelin
Additional planning of the Villa 39 project is in progress.
Department 60 is responsible for the participation of nursing staff.
Head of Unit
Job Description for the Project Leader of the "Villa 39" Project (i.e. for Eve Mandre).
"The task of the project leader is to direct the staff in their work on developing and occupying the patients with autism and other permanent disabilities who will be cared for within the framework of this project.
It is incumbent upon the leader of the project to provide the staff with the knowledge and training which will enable them to perform their daily duties in the best possible manner and to continue to develop their work.
The project leader shall spend 25% of her time documenting and evaluating the work done, as well as liaising with researchers in the field of autism. She will also contribute to informing other closed psychiatric facilities about the knowledge gained from this project. The framework for the provision of information will be established in consultation with the person responsible for the project.
On a regular basis, the project leader shall consult with the Special Education Department and Britta Alin Åkerman. The consultations will primarily take place at the monthly meetings of an autism group consisting of four persons who are doing research and development work in the Department. Eve Mandre, the project leader for Villa 39, belongs to this group.
On a regular basis, the project leader shall consult with CERTEC and Bodil Jönsson at the Lund Institute of Technology to keep the project up to date with developments in the use information technology in medicine and psychiatry.
In co-operation with the person responsible for the project and the project administrator, the project leader shall begin a collaboration with the habilitation services and staff working under the Act concerning Support and Service in the Social Services . These three individuals shall collaborate to ensure that the move from the Långbro area can take place before the end of 1996."
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At the beginning of February, with the first talk of the clinic closing down, Freya becomes frightened and writes to Eve:
"I am terrified! Could you become my personal assistant? That way I wont have to move to a different hospital. The politicians want to save money. I would be enormously grateful! Help me! I dont want to have lower quality care or be physically abused again. Please answer me!"
Her fears turn out to be unfounded. At present there are no plans to move her. Instead the project is adopted, and Eve will become her "personal assistant", albeit as project leader and responsible for education.
The period following the adoption of the project are anxious times for both the staff and Freya. At this time, she herself is working out solutions for her future life. She writes numerous letters about her thoughts to Eve and others. One week, she would write:
"I want to keep you! You are the one who best understands my life-long disability and who can teach me how to deal with it "
The following week, she might be seized with doubt and afraid that Eve is overestimating her ability to grow and develop:
"Listen to me, this is really important! If we are to work together successfully. That I have a fence which is at least 2 meters high or with barbed wire and a washable room in the new house if its not my parents cottage. I want lighting, a bathtub and water in my room, otherwise my parents cottage is the best place for me to live for the rest of my life, isnt it? Can you arrange for me to be part of the care services only? ½ of me is still in the psychiatric services. Which hospital is behind this? Answer me, please!"
This is how Freyas thoughts went back and forth through this unsettled spring when once again everything around her was changing. While these major issues affecting Freyas life were awaiting a solution, everyday life, with its smaller issues, went on.
Eves and Freyas Cage Olympics continued and Eve was spending longer and longer periods of time inside the exercise yard with Freya. At first, she was afraid and was constantly telling Eve: "Dont get so close!". When Eve still got too close, Freya sometimes kicked her more or less in a reflex action. She was upset about having kicked her, but she was unable to control her legs. So Eve started to say that Freyas legs were "electric". They could be controlled if Eve and Freya stopped every now and then and "de-electrified" them by Freya stretching her legs forward and Eve holding them until they stopped jerking. And then they would continue their Olympics.
Sofia, the doll who came to Freya as an "orphan" just before Christmas 1995, got a little "sister", Isabella, that same Christmas. These two dolls were endowed with personal characteristics and from this Freya and Eve developed a game of make-believe about the dolls which greatly improved Freyas ability to empathize. Eve tells her what it is like to be a mother and Freya begins to wonder if it wouldnt be a good idea if she had three children just like Eve. In one of her many letters, she asks: "When will it be time to buy their sister? Can I have some clothes for Sofia before May 15? I feel sorry for her when she doesnt have any clothes. She is suffering I havent managed to make any clothes. I tried twice already " Eve knits a vegetable-dyed wool sweater for Sofia, but it is not quite to Freyas liking:
"Do you think you could make silk clothes for Sofia and Isabella, not from wool. Wool is too heavy "
Eve realizes that the two children are naked again and that the sweater has been torn to pieces. Then Freya gets a Barbie doll from her mother and a few days later Eve receives another letter:
"I didnt like the Barbie doll my mother gave me. I would rather have a big sister for Isabella and Sofia. Is that OK? I threw the Barbie doll away. I dont have it any longer. I will name Isabellas and Sofias big sister Freya."
In the next Cage Olympics award ceremony big sister Freya joins her mother and sisters. The same night, Eve is in the house working on the computer and notices that the much longed-for daughter Freya is lying in pieces in a corner. Now, the make-believe changes character and Eve is determined to teach Freya a lesson she wont forget. She asks the staff to gather up what remains of the doll and to give the pieces to her without Freya finding out about it, and the next day she says to Freya: "Last night I heard a child crying in your room. She was screaming: Mom, dont hit me!" Freya is staring at her in amazement and tries to tell her that she definitely hadnt heard anything and adds: "but why didnt my teddies cry when I tore them apart when I was little?" Eve replies that there probably wasnt anybody around whose hearing was sharp enough to hear the crying. She continues the make-believe by telling Freya that her daughter is in hospital and has to have an operation, but that she visits her every day. Freya takes this seriously and asks Eve to bring her daughter the following letter the next day:
"For Freya! I miss you terribly. You can have ½ my stomach and ½ my intestines. How are you? When will you be coming back to your mother? Before Easter? Im really sorry and I regret causing that accident last night. I will take good care of you from now on! I long to see you, hugs and kisses! Sofia and Isabella need you!"
She continues corresponding in this way with her daughter in hospital. Eve tells her about the operation, makes a new body for the doll, puts her leg in a cast and gets her a hearing aid. Then it is time for the long-awaited homecoming just before Easter.
The same day as Freya the doll comes home to her mother with her leg in a cast, Freya the person twists her ankle and has to go to the hospital to have it x-rayed. The following day, Eve receives a letter: "Freyas leg is fine and so is her ear. Shes had a bath. My leg still aches a lot." A day later she announces that Freya the doll no longer exists. Eve realizes what has happened and asks the staff to look for the pieces. They find them on the roof!
Eve informs Freya that this time her daughter will not be coming back; this time she has been transformed into an angel! By now, Freya has got the knack of the game and responds in kind: "Ive got Freya again! She has turned into a Barbie doll and she is Sofias and Isabellas big sister. My mom fixed everything. And she has a beautiful dress. Three daughters are enough. Its normal. Isnt it?" The next time she sees Eve she very solemnly shows her the new Freya who has been resurrected as Barbie, and says triumphantly: "Only my mother knows that magic spell! You dont know how to do that!"
So, Freya continues her life with her three daughters. One of them has the body of an angel with wings made of silk and is hanging in Freyas window.The fact that there are two editions of Freya the doll proves that Freya is able to pretend and play along in a game of make-believe. In addition, she has learned to look outside herself to some extent, which she will later demonstrate on two occasions. On the first occasion, she is worried about her mother who has had a fall and she asks Eve to phone her to find out how she is doing. The second time, she notices a knife on the kitchen counter next to one of her favorite nursing assistants and she is afraid that another patient will hurt him with it, so she asks for it to be taken away. Freya has never shown this much concern for others before.
Freya had guinea-pigs, budgies and a cat when she was a little girl and her dream is to be able to have pets again. She and Eve talk about her new home, which will be located outside of town. There, she can probably have a pet. They talk back and forth about what animal she might choose. Freyas thinking goes like this:
"Tell Bodil about this too: A blackbird mom is building a nest on my window-sill today. I can reach the nest and the baby-birds and the eggs, but I dont touch them. Thats proof that I can take care of a pet. Isnt it? A guinea-pig or a budgie might be best. Goats, lambs, sheep and big animals are so expensive. Arent they? You decide! Can you take a photograph of the nest?"
These are Freyas thoughts during the months preceding the start of the project. June 1, when Eve starts as project leader, marks the start of a new era in Freyas life. From now on she will be occupied on a regular basis. During the summer there are no major changes with respect to staffing or otherwise, except that there will be more activities for Freya and P., who is the other patient in the house.
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On June 1st, the summer activities begin and Freyas stagnant life changes incredibly quickly. On July 1st , the first month is evaluated and, for the benefit of the staff, Eve writes the following summary of what it has been like for Freya:
Freya now cleans her room herself every morning. She washes the floor and gathers up all the garbage in a plastic bag. If her room is very soiled, she hoses the whole room down. While doing this, she wears a plastic garbage bag to cover her body and a small plastic bag on her head. This very thorough cleaning takes between 40 and 60 minutes and is done before breakfast.
I can come and go as I please inside the fence, and Freya does not impose any restrictions on our time together or on our activities in the exercise yard. I can massage her back and shoulders after her bath. She likes it and expects it. I can sit on the edge of her bed and talk for a long time in the evening. She wants contact to a much greater extent than before.
At the beginning of the month, she ripped up many of her clothes. We saved everything and added up how much it all cost. Freya had no idea whatsoever about the cost of clothing and this is something she needs to learn. She was very surprised when the "ripping-up bill" for June amounted to close to 2,000 kronor ($265).
If you spend time with her inside the fence, she does not rip up her clothes as much and it is easier to distract her when she is disappointed, sad, or afraid. To some degree, she has also started to think before she acts. Sometimes, when she was frustrated because the water in the pool was too cold, she started pulling on her sweatpants, but had second thoughts and tore her underwear instead. She said: "my underwear is old and its better to take something less expensive "
Freya is saving up for a sauna in the new house that we are moving to. The summer has been cold, and she has discovered that it is fun to swim in the pool, but far too cold afterwards if the sun is not shining a sauna would do the trick!
But saunas are expensive, where can we get all that money? First, I pointed to the box of torn clothing worth 2, 000 kronor. Then Freya got a "list of torn clothing" with the cost of every item set out, so that, she would immediately be able to deduct that sum from her monthly sauna account of 1,000 kronor. This will be Freyas first budget!
There is a jogging track in the park marked with blue, red and white plastic ribbons around the trees. Blue = stretching, red = walking, white = jogging. Two of us have been holding Freya by the hand when we have been running. At first, she wanted to run away, but her attempts were not very serious - only a few kicks to the side. The pebbles which cover part of the track also pose a problem. We have to hold her hands when we pass that stretch since rocks are the kinds of things which still make her hands twitch.
During the summer we have planned five day-long trips to her parents cottage. Two of the trips took place in June. In order for the car rides to run as smoothly as possible, we discussed various possibilities with Freya for limiting her freedom of movement so that she would not hit anybody with her arms and legs during the trip. We created the "car sack", a sack made of sturdy material with a drawstring at the top and the bottom. Freya asked us to limit the number of staff who come along on the trip. Having four people around her in addition to her mother just makes her stressed out. We agreed, and only Eve and the two Thomases came along on the first trip.
We had a program for the day planned for Freya and it worked out well. There were no dead moments or any hesitation about what to do next. The ride home was difficult because the car sack was too short and we had to put the yellow sack we had in reserve on top of it. Freya was wearing a sweater and she got so hot she felt car sick and had to throw up. On the second trip, only Eve and Thomas came along and this proved to be the best alternative. Freya did not get stressed out about the car ride and the trip home was easier.
The dolls, Sofia and Isabella, which Freya got in December are still alive and Freya had decided that their birthday is June 11. On that day, Bodil Jönsson was coming for a visit. Freya wished for new clothes for her dolls, since they had been naked for some time. Eve and Freya organized a party - Eve brought a marzipan cream cake which she had in her freezer, Freya invited the other patients B and P and the staff to the party which she had in the garden outside the fence. Bodil brought not only presents for the birthday girls but a dress for Freya and a shiny balloon. Bodil was allowed into Freyas yard to give the gifts.
In connection with the party, Eve wrote a story about how to organize a party so that your guests are happy.
How to Organize a Party
A woman who really likes celebrating her birthday used to organize her parties like this:
The guests were invited well in advance. They were told what presents would be good to bring. They were told in advance what the refreshments would be.
She always held her birthday parties outside. When the guests arrived, they had to sit and wait inside if another guest was already outside with the birthday girl. The guests, who had to come and go in this way, did not feel like they had been to a party. Their idea of a party was not at all the same as the birthday girl's.
What should a party be like to suit everybody? When you have a party, all the guests have to be with the birthday girl at the same time. There should be an element of surprise. The guests are not told what they will be getting to eat and drink. The birthday girl is not supposed to know what the presents will be. Presents are supposed to be a surprise.
The same woman who used to have these kinds of parties, decided that she would celebrate her children's birthdays in the summer. She treated her guests to coffee and cake in the garden and since it was a beautiful summer day, the children were sitting in a row on a bench in the garden. She opened her presents - they were clothes for her naked children who for some reason had been given new bodies. The children and their mother were very pleased with the nice new clothes, and the mother spent a long time making her children comfortable. Then she changed into her best dress and invited her guests, who had gathered in the garden, to have some coffee and cake. All the guests sat together and the hostess, who for her part declined the coffee and the cake, kept the conversation going and made sure they had a good time.
That was a real party which the guests did not soon forget!
Freyas letters change over the month and she writes a letter to the head psychiatrist in the hospital district which is strikingly different from her previous letters to him. Eve tells her this by writing this story:
How to Write Letters
There was a person who really enjoyed writing letters. She wrote to her friends and to various officials. This person didn't think about the fact that there is a difference between writing letters to friends and acquaintances and writing to people in authority.
With your friends you can joke around and write things you think are humorous. Since they know the writer well, they are able to understand the jokes. They are also able to understand the really crude jokes the writer tells about explosives and weapons and things like that.
The officials do not know the writer and therefore cannot appreciate those jokes. They receive the letters in a professional capacity and do not take this kind of writer seriously. If you are writing to people in authority, such as doctors, psychiatrists, the County Administrative Court, etc., you have to think about how to phrase the letter if you want to be taken seriously.
You must state your business as clearly as possible.
You need good and clearly stated reasons if you are trying to convince somebody to make or change a decision.
You have to choose your words carefully. Some words are not at all appropriate in this type of situation.
If you are uncertain about whether you have written the letter in the right way, you can ask your friends who care about you and who are always willing to give good advice.
Once, the writer wrote a very nice letter to a psychiatrist in a position of authority. He was in charge of the whole hospital district. She wished him a nice summer holiday and told him that she is making great progress. He was very pleased to receive the letter because it was so different from all the other letters he had received from this writer. He had not understood or appreciated the messages in the other letters since they were not phrased correctly. He had not taken them seriously. The most recent letter made him very happy and he answered it because he realized that the writer was correct. She had made great progress by showing that she was able to write normal letters.
Freya is receptive to this new kind of story and the praise makes her happy. She is beginning to ask Eve for advice on those evenings when Eve is working at Villa 39. She wants to know if she is expressing herself correctly, whether there are alternative introductory and closing phrases, etc.
It happens that one of the old "jocular" letters slips through and cause a bit of turmoil, but Freya now writes mostly serious letters to friends and officials.
Eve and Freya are beginning to talk about having an identity. About being aware of who you are and being able to describe yourself. On July 5, Eve interviews her and asks her to describe herself:
|Interviewer||Well, Freya, Id like to know how you see yourself.|
|Freya||Do you mean who I want to be?|
|I||Yes, thats a good start|
|F||When I was little I always wanted to be a man who was 7 feet tall and big and strong. But not any longer. Now, I want to be a frail old lady with white hair and who is as thin as a rake|
|I||Why do you want to be an old lady?|
|F||Because then Ill look completely harmless|
|I||Are you dangerous?|
|I||No, so who thinks you are dangerous?|
|F||Those people in Switzerland, that Mr R, the doctor, and L. and those people|
|I||What made them think that you are dangerous? Was it just your size or|
|F||Thats what I dont understand, whats wrong with me Ive never abused alcohol, used drugs or smoked or and I have no idea how I came to have these problems|
|I||Was it something you did that made them think you were dangerous?|
|F||Yes, it was that disability that Ive got|
|I||How did it manifest itself, why did it make them think that you were dangerous?|
|F||Well, I broke things and so on|
|I||Do you think that you are the only person in the world who has destroyed things because you have autism?|
|F||No, Ive heard that there are others|
|I||Yes, but it is very rare to lock people up because they break things|
|F||So why did it happen to me? When they dont do it to others?|
|I||Because you and your symptoms have been misunderstood|
|F||Yes I think so, too, but Im not dangerous at all not when I was a little girl or anytime And when I feel safe, then I dont do anything|
|I||Do you remember that when I started coming to see you here in the cage, I had to hold your legs until they stopped jerking, so that you wouldnt kick about now I dont need to do that at all why do you think that is?|
|F||Because I feel safer here|
|I||And because you get used to things, quite simply|
|I||Lets get back to the question of who you are?|
|F||Im not really sure|
|I||Who are you now?|
|F||Im a lady 40 years old|
|I||What are your interests?|
|F||Languages and the English lesson we had yesterday was fun and other interests? Well, swimming is my main interest but not freezing while I swim swimming in the pool and not freezing and I like having a sauna|
|I||If you could choose your life what would it be like?|
|F||Id like to have a pool in the basement of my house|
|I||Where would you live?|
|F||I wouldnt mind living in the cottage and go swimming in the summertime|
|I||So you would prefer to live in the countryside?|
|F||Yes, by a lake or with a pool in the basement|
|I||What would your days be like there?|
|F||Id have my lessons, my work, and Id be occupied all day|
|I||Who would you live with?|
|F||With you you and maybe Bodil|
|I||With Bodil and me anybody else?|
|F||With Thomas and Thomas with you, Thomas and Thomas and Bodil|
|I||Nobody else? What about Jesper? You asked him, didnt you .|
|F||Yes, yes, Jesper, yes, I forgot about him I want Jesper|
|I||What would we all be doing? What would Jesper and you do?|
|I||He is an artist what could he teach you?|
|I||Something with clay perhaps|
|F||I dont know what to do with it what do you do with the things once youve made them?|
|I||When youve made beautiful things, you can have them to look at just because they are beautiful|
|F||Yes, thats nice Can I practice having them in my room, perhaps|
|I||What else do you want out of life?|
|F||Keeping my weight thats important, too.|
|I||What are you like as a person? How would you describe yourself?|
|F||A harmless what could you call it could you call it a skunk?|
|I||Skunk? Why would you call yourself a skunk?|
|F||Because of the poo well, what can I say?|
|I||You mean the smell? Because it is in your room?|
|I||A harmless skunk thats a sweet description of you.|
|F||Yes, a harmless skunk (she laughs)|
|I||Dont you think the smell is disgusting?|
|F||Yes, unfortunately it is|
|I||Dont you think that it is strange that they have built you a room where there is not even a hole in the floor where you can go to the bathroom?|
|F||Yes, why did they build it like that?|
|I||Your room really baffles me|
|F||I think it is strange, too !|
From then on, the conversations with Freya about her identity take place in very different situations so that she will understand how a person builds an identity. During the August excursion, Freya, her mother, and Thomas N are sitting in the car on their way to the country. They are talking about who she is at that moment when she is on her way to the cottage she loves. At first, Freya cannot think of anything at all, but during the course of the conversation, the idea strikes her that she can change her identity of a "harmless skunk" to "harmless artist", "substitute mistress for Julia" and "the happy owner of a cottage"
Especially on the days of our excursions to the countryside, Freya would show us new sides of herself. She wanted Thomas dog Julia to come along. Julia was allowed to rub herself against Freya, without Freyas reflex kicking starting. Julia went swimming with her and fetched her swimsuit when she had thrown it into the lake. Julia got a pat and a candy out of Freyas hand as a thank you. When we went for a walk, Freya was responsible for Julia and held her leash. If she threw the leash down, we only had to remind her that she alone had the responsibility of making sure that Julia did not run away. Freya understood that Julia was in her hands and acted more responsibly.
Her relationship with Julia is becoming increasingly important to her. At home in Villa 39, she is gradually entrusted with more responsibility where Julia is concerned. On the evenings when Thomas is working, she feeds Julia and the little springer spaniel soon follows her everywhere around the house.
Freya, who previously found it difficult to sit close to other people, was now sitting in her little room in the cottage with three people and a dog. They were looking at photographs, massaging her back and arms to warm her up after she came back from swimming, or just talking about the future and the new house.
Freya had never been able to see mushrooms or berries without wanting to destroy them. At the cottage, Eve and Thomas started picking blueberries and wild strawberries and giving Freya a cupful for dessert. Freya liked them and started picking blueberries herself to have for lunch. When they found mushrooms, Freyas first thought was "what can we make with them?". They made mushroom soup and dried mushrooms. This was something altogether new in Freyas life!
At home in Villa 39, Freya is becoming more and more flexible and is able to handle change. Moreover, she is allowed access to new things that she was never permitted to have before. She wants to paint the walls of her room. "It cant be normal to have walls that are bare like this and since I cant have framed paintings with glass, at least I should be allowed to paint my walls so that theyll look nicer. I know that my taste is a bit different, but it wont hurt anybody if Im allowed to have my room the way I want it. I have always been forced to live in surroundings I didnt choose myself. I will feel a lot safer if I can have something of my own that I have made and that nobody will take away.
This is how it came about that Freya was allowed to paint black dots in the ceiling of her room with a sponge on a long stick. She also got a cup filled with finger paint every morning for painting the walls. Freya is pleased with her new colorful and original-looking room. Her shelves which previously were empty and bare are filling up with new things.
She has rubber gloves for cleaning her room. She has soap. She has a real pen to write with A new blue blanket of the kind that only the staff who were on overnight duty used to get, the kind of blanket you have to take very, very good care of
On July 17, when Eve goes on vacation for a week, she sums up her first 47 days as project leader and finds that Freyas development is progressing so quickly that it is only the limitations of the staff members which can stop it now Freya herself is on her way
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Freya and Bodil Jönsson continue their correspondence, which is of growing importance to Freya. Bodil has also given Freya a physics lesson during one of her visits and Freya would like to have another one. In the course of these lessons, Freya is showing more and new sides to herself. She is very curious and is happy to get her physics lessons and homework by mail.
"Could you please send me some reading material, some physics homework, and when will you come and see me again? You are welcome to come and see me anytime!"
Freya also involves Bodil in her life with the dolls Isabella and Sofia. Bodil had taken her and her daughters seriously and had given them clothes for their birthdays in June. Several weeks later, when writing to ask for more physics lessons, Freya proudly announces: "Isabella and Sofia still have the clothes you gave them as a birthday present!" Freya is feeling her way in her new life, which has become so eventful. Who is Bodil? She knows that Bodil came into her life when she got her computer, but summers here and she wants to go swimming in her pool and go on the five trips to the cottage she has been promised. Freya writes to Bodil: "I stay inside in front of the computer on cold winter days only. I love the outdoors and I want to study physics outside! Can you start working for me as a teacher?
In the beginning of their friendship, Freya is a little concerned that the clinic management, who is still emphasizing dangerousness as one of her main characteristics, might put pressure on Bodil. She knows that Bodil was co-author of Free Freya 1, but will she be able to handle the pressure that Freya believes she will be subjected to? To make sure, Freya writes to Bodil and tells her "I am not dangerous or schizophrenic like they say I am, dont believe them " Bodil answers: "You dont need to worry about anybody fooling me. Im the kind of person who thinks a lot. Almost too much. So Im pretty good at telling whats true and what isnt. Dont you worry!"
Bodil gives Freya a little bit of her world. She sends Freya letters on Lund University letterhead and tells her: "This time, I am writing on university letterhead. Can you see the animal in the circle in the top right corner? Its a lion. It is lying down with a book in front of it and it is holding a sword. It is prepared to fight and to study. You can become powerful just by studying and learning a lot of things."
Bodil is told about the sad fate of the Freya doll and she plays along with the make-believe: "It seems like things are fine with Freya; that she is getting better and is getting a hearing aid. I bet you are looking forward to her return. Im sure her doctors are good. Has anybody told you that the old kind of doctor no longer exists? Today, there are no doctors who can decide what you do, give you medicine and shots. Today, the patients are involved in their own treatment "
By writing this, Bodil answers Freyas anxious questions about what will happen when she gets a new doctor when the clinic closes down. Will it be someone who will give her injections and force her to take medication? Freya has had a lot of bad experience with doctors.
Freya has not forgotten her thoughts about stopping time, which are described in Free Freya part 1. She writes to Bodil:
Can you come at 3 p.m. on the 17th or the 23rd of July, 1996 to the cottage in Järna near Södertälje to my mom, Eve, me, and Turt and stop time. So that I wont have to go back? Then I will stay out there in freedom forever. The clocks can stop at 2.30, cant they? Im painting and drawing a lot with Eve. Studying is fun. Please send me more things to study!"
Bodil uses this letter to give Freya a new physics lesson.
Bodils letter is reproduced in full in order to show which tone is suitable to use in letters to Freya, since this, too, conveys a picture of who Freya really is. We, ourselves, as well as others around Freya need many pictures of her. Read and reflect: Freya was able to understand most of the letter and discuss it with Eve:
Dear Steffi, Dear Freya,
How strange that you are Steffi to me as much as you are Freya. Usually, we only have one name for a person (despite the fact that she has many identities). My name is Bodil Agneta, and those are names which mean slightly different things to me. Sometimes, I actually think of myself as Agneta. But its a bit of a secret who I am on those occasions; not even Eve knows anything about it. So Ill have to tell you about that another time.
When I think about it, it does actually feel a little different to think of you as Steffi rather than Freya. "Steffi" is more colored by the way you seemed to me the first time I met you just before Christmas. She is more of what has been. "Freya" is more of the present and what is to come. More summer, more the future.
What does it feel like to you? Does it feel different if I write Steffi rather than Freya?
I thought I would start our physics lessons by talking about why there is light but no sound under water, but when I received your letter about stopping time, I realized that I had to start with time.
Since Eve might as well learn some physics too, I am sending her a copy of this letter. Otherwise, she knows nothing about what is in our letters to each other. Of course.
What is time, really?
Did you listen to my radio program, not just the bit about "the worlds best Freya", but the bit about time? If you did, you heard me say that just as easily as making herself think that she is short of time, a human being could make herself think that she has lots of time - because she doesnt know very much about what time really is.
"Doesnt she?", you might think. I understand that you think that I would be able to stop time just by stopping all clocks. But, it doesnt work that way. Clocks are just something people have made up. For most of human history, there were no clocks. Man did not have clocks when he lived in caves, on the plains, in the forests, during the Iron Age and the Bronze Age. But time was still going by.
So what is "time"? Well, it depends on what culture you are living in. In some Eastern cultures, it is as if people are not aware of "time" at all. But in our culture, everything is centered around time: start work at 8 a.m., have lunch at 12 noon, bus times, appointment times, TV schedules, But, in fact, we can all decide to what extent we want "time" to run our lives; even though we do not really know what "time" is.
I think it would be a good idea for you, and Eve, and me, and the two Thomases, and everybody else to start thinking a little bit about what to do about time in your new home. This is probably just as important as thinking about how many rooms there should be, what colors to use, how many animals you will have, and so on. You have already been thinking about wanting time to stop when you are enjoying yourself the most. Instead, I think that we should try to work towards the goal of you enjoying your new home so much that it wont be a disaster if the clock keeps ticking along. Maybe that would be the best, the very best, thing for us to do: not to think about time so much?
I have a feeling that your present life is very strictly regulated with respect to time, but that perhaps this is in the process of changing. Thats great! If you become too fixated on what is supposed to happen at, for example, 9 a.m., you end up being a slave to your clock.
And clocks are nothing more than a human invention. First, people noticed the variation between night and day, and between summer and winter. After a while they understood that
the earths rotation around the sun
the moons rotation around the earth
the earths rotation around its own axis
Sundials, water clocks, the hourglass, mechanical clocks, quartz clocks,
In the so-called Mediterranean river cultures around the Euphrates and the Tigris, people became quite good at telling time. It was important for them to keep track of time so that they would know when to sow their crops. They had to adjust their timing to when the rivers would flood. On the other hand, in these southerly parts of the world, the seasons are not very important because the variations between them are not at all as drastic as here in the north. Around the equator, there is almost no difference between summer and winter. The variations in the length of the day in relation to the length of the night are also small: they are both more or less 12 hours long all year round.
It was also important to keep track of time in order to be able to predict celestial phenomena. In those days, there were no lamps, of course. This meant that the night sky took on great importance, and people would sort of "read" the night sky. It formed the basis for all kinds of predictions. It was considered important not to go to war when the celestial bodies were in certain positions, not to get married in certain "signs", etc. To be able to predict all of this, they needed "clocks" that could simulate, that is, imitate the passing of time.
Because clocks are nothing. Only sundials have a connection to what originally created a desire in people to keep track of time. Do you think we should have a sundial in the garden of your new home? I dont know if you have ever seen a sundial, but with a sundial you tell time by how the shadow of a shaft falls on an hour-graded ring. Sundials are not very precise, but you can tell the difference between three oclock and half past two.
Later, people invented the idea of measuring time in "buckets" (the time it took for the water in a bucket to flow out through a small hole in the bottom of the bucket), and in "hours" (they made a glass with a waist; and then they poured sand into the top part and it trickled down into the bottom part. It was adjusted so that one hour had passed when the top part was empty). They began making mechanical clocks. Giant ones in churches. Awfully complicated ones. It was not just a matter of knowing what the "time" was, but about being able to see, for example, the positions of the sun and the moon in the sky. If you come and visit me sometime in Lund, well go and look at the clock in the cathedral. Im sending you a photo of it, for now. (You know Freya, I think that you will be able to sort out your legs and your toilet problems. Yes, I think that you will be able to travel, perhaps all the way to Lund, perhaps even farther! If you want to, that is.)
These church clocks were ingenious devices with meshing cogs. Have you ever built things with Lego, or Meccano, or Briomec, or ? We will have to make sure that you will have things like that in your school. You had such a strange childhood that you will have to make sure that now you get to do all the things other kids did when they were little. In the same way that you are taking care of your children, you will get a chance to take care of, and build, mechanical things. So that you will be able to see that the old mechanical clocks were, in fact, only a clever game. You assemble springs, nuts, cogs in a clever way, and presto! you have a clock ticking away.
When I was little, the only wristwatches around were the ones you had to wind up, that is, you had to tighten a spring inside the watch. Next came the kind of clocks that would wind themselves as long as you were wearing them. I thought that was kind of fun: if you put the watch down on a table, it would stop after 24 hours or so, but if you kept it on your wrist, the mechanism in the watch used the movement of your body to obtain all the energy it needed to keep the clock ticking away. Clever!
Nowadays, most watches have a battery that you need to replace once a year or so. Cogs and springs in watches have basically had their day. Now, it is sufficient to power a small electronic circuit. The oscillations in the circuit move the hands or the numbers forward. Because, today, many clocks are digital, that is, they show 12:03 instead of the short hand pointing at 12 and the long hand pointing at 3 minutes past. The precision watch, the so-called quartz watch, is another type of watch, which uses the oscillations in a quartz crystal to measure time.
Clocks and the Earth, the Moon, the Sun
So as you can see from the above, most clocks have nothing at all to do with how the earth moves around the sun, or around its axis, or how the moon moves around the sun. They are just devices that people have invented. Humanity has even moved so far away from cosmos, the vast, the orderly, the beautiful cosmos, that she has entered micro-cosmos, the world of atoms, molecules, and crystals, in order to find the kind of oscillations that are regular enough to serve as a standard for time.
Clocks and the Individual. Clocks and Steffi. Clocks and Freya.
So what does time mean to the individual? Well, that depends on what you want it to mean. I think that clock time was very important to Steffi and that it still is very important to Steffi-Freya. But I am not sure that it will be so important to Freya. The more fun you have, the less you will pay attention to clock time. And the more you will care about what is happening to you. And whether something is happening at all.
I really dont think that you would like it if I were able to stop all clocks when you are at home. Have you thought about the fact that this would mean that nothing could happen, nothing could happen which would put you in touch with other people, let you do other things (travel to Lund, for example), or learn more physics? Everything, everything, everything would stay exactly the same, And no matter how good things were, you would quickly get tired of it. People are made for change.
Another small example of the fact that we need change:
Do you know that you would not be able to see anything at all if you had a fixed image on your retina for more than 20-30 seconds? Our eyes are so cleverly made that we have eye movements which ensure that the image on the eyes retina is changing continuously even if we are staring at one and the same object for a long time. Other species, snakes for example, have to move their heads to be able to see.
Thats All for Today!
I will have to stop here for today. But first a little bit about what is in this envelope:
A postcard of Lund Cathedral
A postcard of Pippi Longstocking in the South Seas. She is eating bananas and has just sent her monkey, Mr Nilsson, up a tree to get a coconut. I dont think she cares at all about what the time is. What do you think?
And a postcard of Old Man Pettson and his cat, Findus.* They are always up to a lot of fun stuff. Even when its raining. I really like the books about Pettson. Have you read any of them? They pretend to be books for children, and it is true that children like them, but I think adults enjoy them even more.
A tape of my radio program from this summer. It is too long for you and Eve to go and listen to together. But you can have it for yourself. If you dont feel comfortable about having your own tape deck, you can have the sound come into your room, in the same way the TV sound does: through loudspeakers in the ventilation duct. Its up to you.
A transcript of the program. Perhaps you would prefer to read it rather than listen to it. Perhaps you want to do both. I am sending a print-out of what I said on the show. If you listen and read at the same time, you will hear that I am not saying exactly what is written on the print-out. But that is how it has to be if you are doing a live radio program. If you are reading a text, people can tell. I actually wrote a lot of it after the show. (I listened to the tape to find out what I had said!)
I wrote this on a computer at my cottage. Then I printed it out on paper, put it into an envelope and sent it to you. I wonder when you will print something off your computer and send it to me? Besides the faxes that you have already sent me, of course.
Best regards, much love and a big hug (do you think that I will be able to hug you sometime without you getting scared? I think so! But for now, we can always hug each other by letter; thats not scary. Thank you for all your letter-hugs!)
Bodils letters provided inspiration for many conversations between Freya and Eve. For the next little while, it became particularly important to develop what Bodil had written about the eye - that the eye needs variation in order to function. Freya and Eve were able to apply this information to a number of different aspects of life, and Freya was beginning to accept the thought of becoming a new, more flexible person.
Bodils and Freyas correspondence is a mix of questions about dolls, dolls clothes, parties and birthday presents, and advanced physics: What is light? What is sound? Freya is given homework, which she manages splendidly.
Freya is a little offended that Bodil would ask her: "I dont know if you are familiar with %? What percent is 1/4? What percent is 1/2? Etc." Naturally, Freyas answer is: "I know everything about percentages!" (see below)
It is impossible to know what is difficult and what is easy for Freya. So Bodil decided to write about something drawn from Physics rich sources which she thought might be suitable for Freya, and she gave Freya the information she thought would be needed to answer the questions. The lesson is appended to this report. Bodils questions and Freyas answers follow:
Send me the answers to the following questions: (Ask Eve to help you if you dont understand what I am asking you.)
1. Look at yourself in a mirror. How much do you think the mirror reflects? 0% 50% 100%?
2. I dont know if you are familiar with %? What percent is 1/4? What percent is 1/2°? What percent is 1/3?
3. If you feel comfortable about it, put your head under water and look around. What does the light look like? Does it have the same color as above the surface of the water?
4. Listen when you are underneath the water (if you feel comfortable doing that) so that you will know that there is silence! Tell me what it feels like.
5. What do you think the surface of the water would look like if it did not reflect any light at all?
6. Now, lets find out if you know how to write many zeros. 7000 can be written like this 7.103. How do you write
7. A light is shining on a bell inside a transparent glass cover. Before pumping a vacuum you can both see the bell and hear it ring. What happens when a vacuum has been created - can you see the bell? Can you hear it?
8. It might be good for you to get an idea of how small a molecule is.
A sheet of paper which is 1m2 is called a size A1.
By folding a size A1 sheet in the middle, you get a size A2 sheet.
If you fold a size A2 sheet in the middle, you get a size A3 sheet.
If you fold a size A3 sheet in the middle, it becomes a size A4.
By the way, A4 is the most common of all sizes. The sheet of paper you are reading right now is a size A4.
Ask Eve to give you a blank sheet of paper in size A4 (you might want to save this one?) and fold it into
How small can you make it? A7? A8? Or even smaller??
You can neither fold nor cut a paper so that it becomes as small as a molecule, but if I tell you that a molecule is about an
you might understand how very tiny it is??? You would have to fold your A8 sheet another 56 times in order to get down to the size of a molecule.
|For Bodil Jönsson
July 25, 1996
2) I know everything about %
3) I dont dare to look under water. Mum will look for diving mask
4) I didnt hear anything under the water
6) 8.103 8.106
7) you cant hear it but you can see it. Because sound goes through airwaves
8) I made an A10.
In her replies to Bodils letters, Freya uses her new letter-writing skills. She tries out the new closing phrases she has learned: "Yours affectionately" "I wish you a pleasant summer". The sender on the envelope is also changing as Freyas new identity develops. From a simple "Freya" to her complete name and address. The sender of a letter from the beginning of August is written as Miss Freya W
Freya was invited to choose one of the songs for Bodils Midsummers Eve radio broadcast, and it made her very happy and proud that Bodil called her "The Worlds Best Freya" on the air. Naturally, she writes a thank you letter:
"Thank you for playing my favorite song today! Im sending you a nice drawing (a belated Midsummer drawing). I miss you and our physics lessons!"
In July, Bodil wrote the letter (reproduced above) about time and Freyas different names: her real name - Stefania - and her pseudonym - Freya. Bodil made the observation that ones identity can be tied to ones name and that one can feel different depending on what name one is using. Eve brings up this topic in an interview with Freya:
|Interviewer (Eve)||Id like to talk to you about your name. Bodil wrote to you and told you that she feels different depending on whether she calls herself Bodil or Agneta, because, of course, both names are hers.|
|Freya||Well, I used to be called Anna - Anna Elisabet.|
|I||What did you feel like when you were called those two names? Who were you then?|
|F||I dont know what can I say?|
|I||What did you feel like when you were Anna Elisabet?|
|I||Were you a different person then?|
|F||I think so, because before I used to be so scared of leaving my parents and I was at the residential home and I was beaten and so on|
|I||But then you decided to change names why did you do that?|
|F||Because I wanted to be someone else. I wanted to be a boy when I was little. So I changed my name to Stefania because it sounded more like a boys name.|
|I||Mmm, oh yes, thats how it was|
|F||That was the reason.|
|I||But what about Stefania?|
|F||Petra Christiana, too.|
|I||Yes, thats right, but why Stefan? Did you name yourself after Stefan S?|
|F||Yes, yes I liked Stefan S.|
|I||So you named yourself after him you wanted to be more like him? Do you know what he is really in to?|
|I||Yes, thats right, video recorders, video cameras, TVs and things like that|
|I||So who did you become when you were Stefania?|
|I||Did you feel like something changed when you changed names? Did you become a different person to some extent?|
|F||Well, I wanted to marry Stefan, too|
|F||or one of the other guys at the home.|
|I||But you liked Stefan the most?|
|I||How old were you when you changed your name to Stefania Petra Christiana?|
|F||I was already nagging my parents about changing my name when we were in Switzerland. They didnt want me to.|
|I||You didnt want to be that person, the one who was tied up and beaten?|
|F||No. I didnt want to be Elisabet, I wanted to be someone else.|
|I||Did you think that it was because you had been tied up and beaten and that Elizabeth was the person that had happened to?|
|F||Yes, she was that person yes|
|I||Did you feel like things changed when you became Stefania?|
|F||Yes, things changed in 1979 when I started taking Anafranil.|
|I||Mmm something changed then? Were you Stefania at that time?|
|F||No, I wasnt allowed to change names when I wanted to they wouldnt allow it not until the 80s 1983 or no, it was in 1985.|
|I||1985..thats when you changed your name? How did you go about it?|
|F||My dad helped me with the application|
|F||But they didnt do that when I was little then, they didnt help me change my name.|
|I||No. But maybe they didnt think you were old enough to decide.|
|I||But, anyway, they helped you change your name in 1985.|
|I||Did this make life different? When you became Stefania?|
|F||Anafranil made it different, when I began taking it in 1979 in Växjö thats when things started getting better.|
|I||So it has to do with the Stefania period, getting better, I mean?|
|F||But, it was only in 1985 that I became Stefania and I got better in 1979.|
|I||All right, now I understand.|
|F||Yes, thats how it was.|
|I||What about Freya?|
|F||You think I ought to change names again?|
|I||No, but you could call yourself Freya without changing names. We can call you Freya and then we will think of you as another person.|
|I||What should we think of when we think of you as Freya?|
|I||Who are you when you are Freya?|
|I||What do you think? What are Freyas characteristics?|
|I||Freya is going to be freer what else?|
|F||Well, what else?|
|I||Well, can I talk about things that Freya can do that the old Stefania couldnt?|
|I||She is much freer when it comes to schedules, for example, much more flexible in her thinking|
|F||Yes, thats good.|
|I||With Freya, its OK to walk beside her here inside the cage.|
|I||That wasnt possible with the old Stefania.|
|I||With Freya, it is no problem for us to sit with her in her room in the cottage even when there are four of us you and me and your mum and Thomas.|
|F (laughing)||Yes, thats good!|
|I||and we are all crammed into your little room and it is OK with Freya.|
|I||Thats Freya. The old Stefania wouldnt do that. And Im thinking of another difference but, when I think about it, its not quite true Freya is able to go around the jogging track in the park ..but Stefania was also able to go for walks in the park.|
|F||What do you mean?|
|I||We used to go for walks in the park with a nursing assistant. But, what Stefania couldnt handle - what she couldnt handle was eating half a rosehip! Then things went crazy and she started tearing up her clothes but Freya is able to pick blueberries and put them into the pocket of her apron|
|I||and she can eat blueberries and wild strawberries, and she even likes the taste|
|I||Freya likes picking mushrooms.|
|I||What would Stefania do with every mushroom she saw?|
|I||Sure, she would step on them. All mushrooms had to be destroyed.|
|I||Do you think Freya is a different person?|
|I||And who usually points at the wild strawberries here by the fence and tells me that she would like to eat them when they are ripe?|
|I||Now, Id like Freya herself to talk about the progress she has made.|
|F||I have a blue blanket that I am able to keep clean.|
|I||And what else?|
|F||I have a budget.|
|I||A budget, thats right what does it mean to have a budget?|
|F||That Im learning how to save money.|
|I||What are you saving up for?|
|I||And how will you go about it?|
|F||By not destroying my clothes.|
|I||Thats good. Freya is looking towards the future with confidence. Freya has a future.|
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The comments we received from educators and psychiatrists about Free Freya part 1 all indicated one thing: it is the role of psychiatry to diagnose autism, but after the diagnosis has been made, education and technology have to take over. Lena Nylander, Senior Physician at Lund University Hospital, wrote us a letter about autism and psychiatry:
"Over the last ten to fifteen years, there have been many new findings in autism research. Important discoveries include the fact that autism is much more common than people think and the fact that disorders within the autism spectrum can manifest themselves in different combinations of abilities and limitations and can occur at different intelligence levels. Unfortunately, this knowledge is not yet widespread in adult psychiatry.
Most adults who have autism were not diagnosed as children. Despite this, many are doing well. However, some have become patients in the psychiatric services, where the ability to identify their autism is lacking. Freyas life illustrates very clearly how important it is for the field of psychiatry to acquire knowledge about autism. With this knowledge comes the insight that some of the common methods of treatment in psychiatry are inadequate for patients with disorders in the autism spectrum. It is time for new disciplines to enter the field of psychiatry - education and technology, for example. In the meeting between these different fields of knowledge, new thinking and methods will arise."
For about 20 years, autistic children and young people have been receiving education in the Swedish special school system. In recent years, groups for students with autistic disorders have been formed in elementary and high schools as well. As knowledge about the nature of autism has grown, educational methods have gradually improved. By now, there is a considerable amount of documentation about education for children with autism, but the literature previously available about adults dealt mainly with psychological and neurological trials carried out with patients in psychiatric care in the United States and other places. It was not until the TEACCH Division of Chapel Hill, North Carolina, began to write about their educational work with adults that an example of a successful educational method for adults became known. Moreover, lately, a number of autobiographical accounts by adults with autism have been published. These adults describe how they succeeded in arriving at a diagnosis, how they struggled to overcome the greatest difficulties, and how the disability affects their lives.
One of the educational approaches described by the TEACCH division (Schopler-Mesibov 1992) includes a program called "individual counseling". It consists of an empathetic "counselor" teaching the adult to develop his ability to interact socially. In addition, the adult is taught various techniques for mastering difficulties which may arise in encounters with other people in everyday situations. It is essential that the counselor is able to empathize with the autistic persons way of thinking and functioning in order to be able to help him manage in our alien culture. Since the 1980s, Chapel Hill has also had groups for young people and high-functioning adults with autism. In these groups, a cognitive learning model is used in order to improve the students understanding of social interaction. The program has two important components - providing information to those close to the autistic person about how the surroundings have to be adapted to suit people with autism and developing the autistic persons social ability. Today, the TEACCH model is also used in Sweden for teaching both children and adults.
In the educational debate, there is always discussion about the advantages and drawbacks of labeling children who have behavioral problems or various disabilities. Having autism means having an invisible disability. Most people with autism look perfectly normal - it is only by their behavior that one can tell that something is not quite right. Deficient social ability (which is connected to a difficulty in mentalizing) is distressing to the individual and cognitive deficiencies lead to special learning difficulties. Without knowledge about these difficulties it is impossible to create learning situations which help the student gain a better understanding of himself and the world around him.
A person with autism is even more dependent on lifelong learning than others are, since the world is constantly changing and is difficult to understand without explanation. Freya and other people with autism have confirmed this.
The deficiencies which have been found in persons with autism when it comes to interpreting human faces, non-verbal signals and social interaction can at least partly be overcome by learning patterns for behavior in standard situations. This is particularly true for high-functioning individuals with autism or Aspergers syndrome.
Creating an Individual Educational Method
Not until she reached adulthood did Freya receive any education which took into consideration her special ways of understanding and thinking. The work which Eve began in the 1992 fall semester is continuing and will need to continue for many years to come. Almost four years of working with Freya has resulted in a clearer picture of her abilities and of how to proceed to develop these abilities. During the 1995 fall semester, in a post-graduate course in Special Education at Stockholm University, Eve began writing a paper about her work with Freya. The following is an excerpt from that paper describing her approach to the development of a special educational method for Freya:
"By studying various theories I have attempted to develop a structure for the work I have so far been carrying out intuitively. One thought led to another. The work came first, then came the theories. One cognitive theory (Sommerhoff 1990) appealed to me, because I thought it provided a good intellectual structure for how concepts are created in our minds and how they form coherent inner maps. These maps give us a comprehensible picture of the world and give meaning to our existence. I believe this is an important basic theory for understanding the atomistic world of the autistic person. With Freya, the concepts and conceptions as such are forming, but they do not connect into coherent inner maps of "the self in the world". Sommerhoff describes how "what-leads-to-what-chains" form "what-leads-to-what-conceptions". Where Freya is concerned, these chains must not have too many links if she is to develop "what-leads-to-what-conceptions". This means that her world is full of surprises. If you do not prepare Freya for upcoming events and create a visual structure showing what is to be done and where, her whole system stays in a constant state of emergency preparedness.
Freya often says that she has so very few thoughts. She finds it difficult to evoke conceptions from memory if they do not concern something which is particularly important, or of special interest, to her. This is understandable when one considers the fact that she has no uniform, meaningful inner map from which she can easily retrieve the information she is looking for. Moreover, the fact that she cannot pay attention to several occurrences at once may explain her inability to carry on inner monologues and to think along new lines (see Cotterill 1994). Because that requires the ability to quickly switch ones attention between the present, the past, and the future, to compare and evaluate, etc. She often says that she is using up so much energy trying to keep her mind clear. When she has been doing brain work for a long period of time she tends to become drowsy and has to rest.
Freyas hyperlexia (reading which does not include comprehension) also becomes easier to understand when one considers the fact that people with autism do not have difficulty with the expressive aspect of language, but rather with semantics. Reading the words mechanically does not require a big effort, but understanding the meaning while reading requires a lot of energy. Furthermore, she does not have the ability to quickly skim through a text that she has read in order to sum up the essential points. This indicates that reading with comprehension is an extremely demanding procedure for Freya and for many other persons with autism.
Freya and other persons with autistic disorders also have difficulty finding meaning in contexts other than language. The difficulty concerns all situations where one has to keep several factors in mind at the same time, to think in several steps, and where there is ambiguity and no set rules. Where human behavior and social interaction are concerned, the course of events changes quickly without the reason behind the change being expressed or visible. Many things have to be guessed at and understood from a context other than the concrete, obvious one.
Cotterill states that people with autism have difficulty shifting their attention quickly enough to obtain a comprehensible overall view of a complicated situation. This theory represents one more piece in the puzzle which might help us understand the problems of autistic people when it comes to interpreting the world. It also helps us understand why many high-functioning autistics tend to get stuck in a train of thought and then repeat it again and again.
It is obvious that people with autism need the help and support of other people in order to generate new thoughts and move along to a new train of thought when their attention gets stuck in one track.
With Freya, it has been possible gradually to introduce new thoughts and conceptions. Her reasoning ability has improved enormously. She is also much more social and wants company to a much greater extent than before.
Freya has a great ability to take in information, but, despite this, she finds it incredibly hard to retrieve simple information when it is needed. Her life is very limited and controlled by routine. Even so, she is not able to foresee all the situations which may occur in her small world. Often, her only way of handling frustration is to rip up her clothes or continually repeat the same questions to the staff so that sometimes, in desperation, they forget their answer and vary their reply slightly, which gives her an opportunity to intensify her nagging.
It is evident that Freya needs people around her who have knowledge of autism and who take into consideration her difficulties in understanding social life and human behavior. Human behavior will, of course, be all the more difficult for her to understand if the people around her have different ways of looking at her and understanding her and her needs.
Until recently, the staff at Freyas clinic did not have any knowledge of disorders in the autism spectrum and consequently it has not been possible for them to set objectives based on a suitable educational approach. The new project which has been created around Freya will afford entirely new opportunities for her to develop."
During their lives, people with autism are often caught between various systems and laws which delay the establishment of an accurate diagnosis, as well as the provision of a suitable treatment and education. Freya is one of these people who have had the maximum of bad luck in life. It is remarkable that there are still people in our country who did not receive a complete education when they were of compulsory school age (see, e.g. CERTECs report 4:96 about Kennie. Even today, accurate and early diagnosis of autism in children is not a matter of course.)
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The recent introduction of a new statutory type of school for adults with cognitive disabilities, autism, and acquired brain damage has enabled more adults to receive an education. Those who have these types of disabilities, and whom it has not been possible to admit to adult further education programs, can now receive an education in the special schools for adults. Many people with autism have not received an education adapted to their needs. When they were of school age, there was no awareness of autism, the educational methods were not as developed or as adapted to this disability as they are today and the psychoanalytical model was prevalent.
This does not mean that we wish to minimize the value of the work done by Eve and others during the 1970s and 1980s, but rather we wish to point out that there are many adults with autism who have not had appropriate teaching during their school years. Today, knowledge of autism has increased considerably and, consequently, the Special School System for Adults, which is still in its infancy, may provide a new opportunity for adults with autistic disorders to receive a satisfactory education. At present, the system is in the process of establishing structures and working methods adapted to a large number of individuals with different learning needs and strategies. The work which has been done to date needs to be analyzed and evaluated to find the way to a teaching method which will suit adults with autism.
To be able to develop a usable teaching method for adult students with autism, one has to take into account the problems arising from their different way of thinking. Each step in the chain starting with an encounter between a student and a teacher and ending with new knowledge being integrated into existing knowledge has to be analyzed in order to highlight deficiencies and to find ways to overcome them.
Where a student with an autistic disorder is concerned, the problems begin with the student/teacher encounter, where the autistic student has difficulty interpreting facial expressions, body language, and social signals correctly. The students extreme way of focusing on detail also leads to problems, since this makes it hard to get an overall picture of events and consequently to make meaningful connections. It may also be difficult to motivate the student to take an interest in things other than details, which sometimes control his whole existence.
Interpreting and processing information is another difficulty faced by students with autism. The autistic student does not have a coherent inner map of "the self in the world" and accordingly finds it hard to create inner conceptions at all levels. She is unable to reflect on her own thinking and actions, and on those of others. This means that the discrepancies which arise between the autistic persons conception of the world and that of those around her cannot be put right by her own ability to find the source of the error. Usually, the autistic person does not even perceive that there is anything wrong. This turns life into a series of endless surprises making it difficult or impossible to understand causation in a chain of events. If the autistic person is to receive explanations for her complete inability to understand and react correctly in our world, people with a knowledge of autism must be available to explain and provide alternatives
When approaching a student with autism, it is also important to be aware of the clash of cultures between the autistic persons way of reacting emotionally and that of the dominant culture. She has grown up in her own culture and has not been taught the social and emotional rules of the majority culture.
Until January 1995, the Special School System for Adults was the responsibility of the Disability Care and Habilitation Services Board in the various counties. Now, it is a municipal responsibility and it has been given a new curriculum - "Curriculum for Voluntary Schooling 94":
"With the previous level of education and the experience of each student as the starting point, the Special Schools for Adults, which are directed at adults with developmental disabilities, shall deepen and develop the students knowledge as a basis for participation in the community and in working life.
The Special Schools for Adults shall provide education aimed at developing skills in an individual subject as well complete skills equivalent to those taught by the compulsory special schools and the vocational branch of the secondary schools." (p. 28)
Further on in the text it is stated that, "In particular, the school shall endeavor to ensure that each student in the special secondary schools and in the Special Schools for Adults:
The Curriculum offers the adult student a choice of three types of schools: the School for the Severely Intellectually Disabled, the Special School - Elementary/Junior Secondary Level , and the Adult Special Secondary School.
|The program offered at the School for the Severely Intellectually Disabled has the following content:|
|General awareness and knowledge of the surrounding world||975||hours|
|The program at the Special School - Elementary/Junior Secondary Level comprises the following courses:|
|Swedish or Swedish as a second language||795||hours|
|The following subjects are offered at the Adult Special Secondary School:|
|Swedish or Swedish as a second language||200||hours|
|Mathematics, Social Studies, Religion||150||hours|
A suitable educational system has now been established, but it still does not meet all the requirements of people with autism, in particular if their education has been as inadequate as Freyas (2 days of school before the age of 36 and isolated efforts by teachers over the years.) Another reservation that could be put forward with respect to the new curriculum is that it presupposes a level of student participation in decision-making that is unrealistic where people with autism are concerned. People with autism are not aware of themselves as individuals in the same way that other adult students are, and cannot communicate to the same extent. They do not have the ability to perceive their own educational needs as easily as other students and cannot to the same extent determine their course selection themselves. The curriculum objective of the student "taking personal responsibility for his studies and his work environment" and "actively influencing his own education" is not a realistic one for this group of students.
Many students with autistic disorders cannot easily fit into the various levels and courses included in Curriculum 94. Students are offered the choice of three levels: the School for the Severely Intellectually Disabled, the Special School - Elementary/Junior Secondary Level, or the Adult Special Secondary School. Students with autistic disorders, however, often need the whole spectrum from the communication skills and general awareness taught at the School for Severely Intellectually Disabled Children, the courses offered at the Compulsory Special Schools, and sometimes even going as far as the Individual Program offered at the regular secondary schools. Freya is a typical example of a student who bridges the levels in this way. While she needs to practice basic communication skills and develop an understanding of the workings of ordinary everyday life, she is able to read advanced books on neurophysiology and psychology and corresponds in four languages. For her reading to function well, however, a special approach based on special education methodology is needed. Moreover, in conversations with Bodil she has shown proof of a remarkable knowledge of science (cf. above) and perhaps even a special aptitude for this field. (cf. below).
Several European countries have special curricula for students with autism. Britain has "The National Curriculum - access for pupils with autism". This curriculum is structured so that it follows the regular curriculum for the school system in general, but for each sub-area it has a supplement where the limitations of autistic students are described. It also provides advice and ideas as to how teachers can adapt their teaching to suit students with autism.
A supplement like the one just mentioned is needed to the 1994 Curriculum. The latter does not even mention this group of students or their special difficulties despite the fact that they are given special rights in both the Act Concerning Provisions and Services for the Intellectually Handicapped and the Act Concerning Support and Service for Persons with Certain Functional Impairments. A commission headed by Ingegärd Wärnersson is studying the conditions faced by students with disabilities in Swedish schools, but the scope of the study does not include education for adults with functional impairments.
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The special school unit responsible for Freyas education has provided between two and six hours of teaching per week since she became entitled to this type of education. Freya has made substantial progress and was hoping that the teaching time would be increased to three hours per day for the 1996 fall semester. With her parents, she made an application to that effect.
Pursuant to Curriculum 94, it is the responsibility of the Principal of each school district to ensure that
With her two days of formal schooling received at the age of seven, it would be reasonable to assume that Freya is one these adults who will finally receive a complete education based on her needs. The special school unit responsible for the Special School for Adults has a deep understanding of the educational needs of students with autism and expresses its vision as follows:
However, the answer to Freyas application for more hours of teaching was a cutback from six hours to four hours per week on the grounds that no student in Special Education for Adults could be offered that many hours.
Paradoxically, what then happened was that the psychiatric services intervened to defend education as a working method and offered special educator Eve Mandre the position of educational leader for the whole project around Freya. The perspective had been reversed in that, in this case, the psychiatric services became the defenders of education.
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What actually happens in a mentalizing process? What is experience? What happens when information is turned into knowledge? Why is the brain constantly transforming information in this way? And how? Is there - extremely simply put - some kind of impulse for information processing in the brain? Is this impulse missing in people with autism or is it the actual information processing ability that is deficient?
There are so many questions! Let us at least make an attempt at trying to distinguish between the various concepts and point to a possible structure. In our opinion, it is necessary to try to make a distinction between
Unfortunately, a clear distinction between these three concepts is not always maintained. Not even in educational contexts.
Data can, for example, be letters, ones and zeros, which are completely devoid of content until they are combined into a connected whole. When Freya, who has hyperlexia, reads something, she is only rattling off data.
One example of information is the contents of the ICIDH (International Classification of Impairments, Disabilities and Handicaps) or descriptions in some other standard reference book. Those who read something in a reference book like this and only absorb the actual information given, will (at best) be able to answer questions about what they have read. But that is all. If you happen to know more, it is because you have transformed what you have read into your own knowledge, that is, into connections which enable you to answer questions about things which were not stated in the article.
As far as I know, there is no overall term for special difficulties relating to the transformation of information into knowledge (the equivalent of hyperlexia, which denotes an inability to transform data into information). However, this is precisely where Freyas main problem lies with respect to education: she is able to absorb information, but the information forms into separate islands. Getting Freya to use in new contexts information acquired in others requires a major effort and almost impossible improvisation.
If this type of difficulty is to be overcome, a considerable educational effort is needed, as are adequate opportunities for new insights. Freyas learning difficulties and similar difficulties experienced by other individuals with autism can contribute greatly to the field of education simply by focusing our attention on the difference between information and knowledge. Most likely, the effects of this difference vary according to the subject area. Knowledge relating to the natural sciences is usually presented openly and logically, and unlike most other contexts, there are not very many hidden presuppositions. At first, the requirement of science for generalization may seem insurmountable. But on reflection, might it be the case that generalization as a consistent and always possible art would not present a problem for Freya?
At the same time as Freyas road to information and knowledge continues with our support and conversely provides support for our own thinking, technology is being developed which will make available knowledge which is not human-based. Knowledge in a jar. Expert system-based knowledge.
Previously, what characterized knowledge was that
To sum up: there has always been a price to pay for knowledge (although not always a financial one).
Now, human-based knowledge will have to face competition. Knowledge in the form of expert systems will be at least a cousin of human-based knowledge. Perhaps this will influence the way in which the individual searches for knowledge and make her more aware of the distinction between knowledge and information? Perhaps the building of expert system knowledge and the building of Freyas own knowledge can benefit from each other in more ways than by the creation of the "Ask Freya" special expert system (cf. above). And perhaps knowledge in the form of expert systems will become a gold mine for individuals with autism; a compensatory device for those who are unable to transform information into knowledge by themselves.
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We would like to end this report by renewing our discussion concerning Freyas computerization and by letting this section be the one which is perhaps the most forward-looking.
We have seen that the proposed computerization paved the way for explosive development. At the same time, it made so much of the old impossible to maintain. The newest of the old to be undermined by this development was actually the computerization itself as it was originally intended. We immediately discovered that we were in fact proceeding in accordance with the notion that Freya was dangerous (and that special equipment was needed if she was to be allowed even close to a computer) by planning for the computer to be placed in a protective cabinet. It does not mean that it was wrong to invest in a special keyboard or in other special equipment; that was, and to some extent still is, necessary. But when the computer opened up the old closed room, it became obvious that it could be part of a social environment rather than being used in seclusion.
Our plans for Freyas computerization this fall are based on different ideas entirely. Previously, our thinking was that "when she discovers the fax function she will not want to break the computer!"
This time our thinking goes as follows:
Now, there could be no student more motivated than Freya. Now, we will use the computer for:
Planning is underway for the expert system "Ask Freya" which will be used by Freya and the staff at Villa 39. The prototype for the system is the SVARNE expert system developed by CERTEC (See "SVARNE - an expert system based on tacit knowledge", Proceedings of the Sixth Scandinavian Conference on Artificial Intelligence (SCAI'97), pp. 279-280, Helsinki, Finland, August 1997). The fact that Freya is a very complex person means that not only do the staff at the clinic have an incomplete picture of her but, in addition, their pictures are all different. In a situation like this, the construction of an expert system, which introduces Freya and in which Freya herself is consulted as soon as there is disagreement or no answer can be found, may be a superior way of making her visible. Daily records will be entered into the system. One staff member will be responsible for the computer at Villa 39, while CERTEC will take part in the construction of the actual expert system at the research and development level. One part of the process will be an expert system course taught by CERTEC to the staff at Villa 39.
In other words, while there are very few computer programs made especially for people with autism, there are many wide, concrete, and practicable routes available. We will be collaborating with others to develop special computer programs, but initially we will be focusing on finding out what Freya can and wants to do and what technology is available allowing easy interaction with the computer without too many steps.
In our previous report we wrote that Free Freya part 2 would deal with Freya becoming computerized. Now, we say: Free Freya part 3 will deal with Freya and her computer.
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The following is an example of how a physics lesson can be conducted with Freya. It is important to keep in mind that until four years ago she had attended school for only two days. Since then, her only science lessons have been the ones provided by me, at Villa 39 and by letter.
It is patently clear that Freya has picked up quite a lot over the years despite being isolated. Her father, in particular, has taught her a lot.
Dear Steffi, this is physics lesson number 2!
When you spend time in the water, do you ever swim under water? Or do you ever put your head under water? When you do, do you look around? If so, you may have noticed that it is actually bright under water. But also completely silent.
Now, I will tell you a bit about why this happens. First you have to know:
What is sound?
In the air there are tiny particles called molecules. These are oxygen (21%), nitrogen (78%), argon (1%) and very, very small amounts of other substances, such as carbon dioxide. Frequently, the air is mixed with some water vapor, more or less depending on how humid it is.
These particles are caused to move: they start to oscillate around their positions, when you speak, for example. Or when you ring a bell. Or when you whistle with a blade of grass (do you know how?). Or when you clap your hands. Etc.
If you do this in a vacuum, there is no sound at all. You can do some fun experiments with stuff like this. For example, take a bell that is ringing. Everybody can hear that it is ringing. Then if you pump a vacuum around it you will not hear anything any longer. Even though you can see the clapper hammering away.
Sound is a mechanical wave motion and particles are needed for sound to propagate. It is true that when sound comes through the air and hits the surface of the water, there are molecules in the water too, and you might think that the sound would just slip into the water and make the water molecules start moving. But in every interface there is always reflection. And when sound hits the surface of the water, almost all of the sound is reflected back into the air. So there is nothing left to make the water molecules start moving. The surface of the water acts as a sound mirror and reflects almost 100% of the sound.
Do you know how you look for submarines and search for sound reflections? Well, you hang a piece of string from a helicopter, for example, and at the end of the string you place a microphone. You let it hang down below the surface of the water. This is because sound which is emitted below the surface of the water can be heard in water, the sound of boat engines for example.
I think the silence under water is very nice. But I never go very deep or stay down for a very long time. But my daughter Karin does a lot of diving. Did you know that fish are curious about divers? They swim up to the divers and the divers are able to touch them.
And What About Light?
Light is not at all the same thing as sound; that is why we need both our eyes and our ears. Light is something remarkable: electrical and magnetic oscillations which propagate at the same time. At an amazing speed: 300,000,000 m/s in air. Sound only moves at a speed of 340 m/s.(That is why you see a flash of lightning before you hear the bang when there is a thunder storm.)
When you write 300,000,000 m/s, that is, 3 with a lot of zeros after it, you usually write
3 108 m/s. Practical, isnt it?
When light hits the surface of the water, some of it is reflected, but actually only a few per cent. Most of it slips through and moves through the water at a slightly slower speed of 225,000,000 m/s. Do you see that this can be written as
2.25 108 m/s?
So the reason why there is light but no sound under water is that most of the light slips through the surface of the water but most of the sound is reflected. Why the difference? Well, why should it be the same? Light and sound are not at all similar. For example, light doesnt care at all whether there is air or a vacuum; light passes through a vacuum just as easily as through air. That is why light can reach us from far away in space, from the stars, for instance. Neat isnt it?
This was followed by the homework assignment which was reproduced with Freyas answers in the main text
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Free Freya, Part 1. Before Becoming
Free Freya, Part 3. A year of education in the psychiatric care services