Freya

Free Freya

Part 1. Before becoming computerized

Eve Mandre and Bodil Jönsson


Translation: Anna-Karin Batcheller



Summary

Eve Mandre, Bodil Jönsson

Freya is a slender 40-year-old woman. Although she has never robbed or killed anyone, although she has never even knowingly physically abused anyone, she is being kept in a locked cell with an exercise yard outside. She has been called the most dangerous woman in Sweden. After being separated from her parents when she was still a child, she has had at least 300 care givers, numerous physicians and other experts. They have all had their theories about who Freya is and why. The annual cost of the care provided for Freya amounts to more than 2 million Swedish kronor. The National Board of Health and Welfare is responsible for her supervision.

In the 1990s, Freya was diagnosed as a person with autism and for three years she has been receiving special education for intellectually handicapped adults for a couple of hours each week. Despite the exceptional conditions for the lessons (outdoors, with teacher and student each on their own side of a fence), Freya has made great progress and has been given new hope in life.

The reason this report is being written now is that it is needed as a “before" document for the computerization which Freya is now looking forward to, and which will begin on February 16-18, 1996. The concept, the preparatory work, the implementation and the evaluation of Freya's computerization is a collaboration between Eve Mandre, Freya's teacher, Bodil Jönsson, CERTEC - Center for Rehabilitation Engineering Research at Lund University, and Brita Alin-Åkerman, Department of Special Education, Faculty of Education, Stockholm University.

The effects of Freya's computerization can be seen even before its actual inception. The preparatory work has given rise to a focused discussion, and Freya's 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 Freya's life which need to be made visible. The report may also be useful in view of Freya's relocation which will take place within the next six months.

We will publish “Free Freya, part 2" when we feel that we are able to describe some results of Freya's computerization. Eve Mandre has written the major part of this report and has discussed it in detail with Bodil Jönsson. Freya and her parents have read the report and fully support it.

The research project is financed by the foundation “Freja's Fond" (Freya's Fund). Otherwise the foundation has no connection to the “Freya" of this story. Our protagonist chose the pseudonym “Freya" herself.

February 12, 1996


Key words:

autism, computerization, closed psychiatric care, special education for adults.


 

Table of Contents



Preface

Eve Mandre

During the three years I have spent with Freya so far, I have seen how she, like other people, needs people to support and help her find a new direction when her attention wanes and her thoughts go round in circles.

Gradually, it has been possible to introduce new thoughts and ideas to her. Her ability to reason is much improved. Although she has the ability to take in and accumulate large amounts of information, Freya's ability to retrieve simple information when needed is poor. Her life is limited and controlled by routine. Despite this, she lacks an overall comprehension of her small world.

It was at the time when I was walking on my side of the fence with Freya on the other - a year had passed since she was prohibited from visiting the park - when I could see before me an interminable number of years ahead of walking back and forth on my side of the fence with Freya on the other side, when I had thoughts about her becoming computerized but had no idea whatsoever of how to accomplish it, that I unexpectedly met Bodil Jönsson from CERTEC in Lund. I told her about my ideas - Bodil listened. We began corresponding frequently, exchanging thoughts and ideas. Our aim is to empower Freya and give her more context, which might compensate for her insufficient ability to understand the world and make it easier for her to grasp it. Installing a computer in her room is not impracticable, and in a couple of weeks it will be done.

In this report, I am focusing on Freya as a person and on her present situation. Between us, Bodil and I are deciding what type of equipment Freya will be provided with and are determining our strategy for the introduction of the computer. So far, Freya has only seen pictures of her computer and the glide-point which we hope will be a sufficiently sturdy control device. She is talking a lot about it now and she thinks it is good that she will get a “key" (the ability to send a fax) to my house.

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Preface

Bodil Jönsson

CERTEC - Center for Rehabilitation Engineering Research at Lund University - had not had any previous contact with Freya when Eve Mandre took part in a series of seminars for teachers within the framework of the project “Isaac Starts School" in the fall of 1995. Eve saw opportunities for Freya in this new technology. Not in Isaac per se, because it has a very fragile touch screen, nor in digital pictures per se (Freya has a particularly well developed verbal language). What caught Eve's attention was the opportunities for empowerment offered by technology.

On our part, at CERTEC, we have research experience which shows how quickly and completely a person can change her self-image if only she is given the right tools. Our work with the computerization of children with autism is the closest we have been to problems like Freya's. But this was about something completely different: an adult with very particular characteristics in an extreme situation.

It is impossible to avoid becoming personally involved with Freya. At the same time, it is important to look at the whole field. In psychiatric care there have been very few technical aids for patients, both nationally and internationally. By undertaking this project we would like to emphasize our belief that technical aids can be a practical way forward even in psychiatry, an area which includes disabilities which are often forgotten (even in the WHO's definition of disability).

During the course of the project we will publish its process and results in close collaboration with Freya, her parents and Eve Mandre.

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Freya - a Pseudonym

When Freya was given the choice of using her own name in this report or opting for a different one, she was given some suggestions to choose from, including Freya ( in Swedish, Freja), which is the name of the foundation which is financing this computerization project. At first, she found the very idea of choosing a pseudonym very amusing. She laughed heartily and said “Freya - that sounds funny. When I added “We could call the report Free Freya" she made her mind up at once.

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Freya's Early Childhood

I met Freya in October 1992 when I came to her clinic as a teacher. She was 36 years old and had a long life behind her as a patient in closed psychiatric care. She had also had a life, albeit short, as a seemingly perfectly ordinary child. She spent her first 9 years with her parents who describe her childhood like this:

At first we didn't notice anything strange: walked early; talked at the right age; she was potty trained early. It wasn't until she refused to play with other children that we began to think there was something wrong. And yet she did play with her little brother at home. He was 2 years younger, but he was able to do many things that she couldn't manage. With hindsight, we sometimes think of situations which might have seemed strange. When her aunt came to visit, Freya wouldn't let her sit at the table with the rest of the family. In fact, Freya refused to eat at the same table as somebody who was not part of her immediate family. And then there was this thing she had about not wanting to be with other children unless her mother was present. She liked other children, but she didn't quite know how to play with them. And we were always very tense when we were out somewhere with her …she could get the most unexpected ideas … destroy something or do something else…"

Like the time we were on holiday in Italy and we were walking across a bridge - suddenly she just took off her sandals and threw them into the water. And her little brother's hat - she always threw that away… We took her to the Opera to a children's performance. She liked the circus, but once she became panic-stricken when a clown was shot out of a canon… the sound was so unexpected that she took her mum by the hand and ran out."

When I think about it she didn't like fairy-stories either. She wanted rhythmic poems or songs. She used to sing well-known children's songs in both Swedish and German."

Freya really liked animals and took care of two budgies and a dwarf parrot. When the budgies had little ones, she watched over them, cleaned the cage, and fed them and she always used to say that she would take care of sick animals when she grew up."

We also had a large aquarium at home and she had an ordinary room with curtains, a bed, bed linen, rugs, a book shelf, 15 dolls, 12-13 teddies, a black board with pieces of chalk and other things that people have in their home. We didn't have to remove anything because of Freya…"

She would run the tape recorder by herself, turn on the TV and use knives in the kitchen. Once, a strange thing happened when we were skiing in the forest. We were going along a track where the trees were sign-posted at regular intervals. She was so fascinated by the signs that as soon as she got home she started copying them onto large pieces of paper and wanted us to put them up all over the house. At the time, we couldn't understand what was so special about these signs but today, when we know more about autism, we realize that she simply needed landmarks."

When Freya was 6 years old and she was about to start school, we felt that we had to do something to find out what was wrong with our daughter - on the one hand she was normal, but on the other hand there was something not quite right. She was admitted to a children's hospital for tests; she was there for a couple a weeks at a time on several occasions, but nobody was able to make a diagnosis. It was assumed that whatever it was would disappear with time."

When it was time for Freya to start school, her parents chose a small catholic school because the classes were small and it had a good reputation. Her mother came with her to the classroom for the first two days, and during those two days Freya was very happy at school. She did everything the other children did. On the third day the teachers insisted that her mother not accompany her any longer. They were convinced that she was a spoiled child with a clinging mother and that everything would be fine if only mother was not there. At that moment her mother began to realize that there was something seriously wrong with her daughter. It was not just about her own and her husbands inability to bring her up, and it would not go away with time. Freya had home schooling for a while, but it was mainly her parents who provided the schooling she could not get elsewhere.

By this time, Freya had got another little brother. She had hoped for a little sister and she wanted to throw her baby brother away. He had to be in a locked room so she would not get rid of him in an unguarded moment. The situation in the home was getting untenable with children who had to be watched over constantly, one child who could not attend school, and no one able to tell her parents why. Was there a special school for children like Freya? Yes, experts told them that there was a residential home for children with developmental disabilities which would be suitable for her. This would mean that she would be placed in an institution and would only be allowed home on weekends. It was not the solution that her parents had been seeking, but several pediatricians claimed that there were experts at her type of condition at the clinic and that she would be fine. So, at the age of nine years and nine months, Freya left her home and moved in with strangers who took charge of her care and education.

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Freya's Early “Care"

Freya was not like any of the children with developmental disabilities who lived at the home. She was beautiful, she was intelligent, but her behavior was not what one would expect of a child with those qualities. She refused to speak, she would not play with the other children, she did not like changes, and she would break things unexpectedly and at lightning speed. The staff at the home concluded that what she needed was to be brought up properly. Her response was to tear her clothes apart, break windows and soil her pants. As soon as she was allowed home she stopped this behavior, but at the residential home things went from bad to worse and finally it was decided that she suffered from hysteria and the cure for hysteria was physical punishment. This spiral of violence and destruction escalated to the extent that Freya was not able to stop even when she was at home. It reached its peak one weekend when Freya provoked her father to the breaking point and finished by breaking all the windows in the basement. Her father gave her a good spanking and after this her home was not safe from destruction either and the family had to spend their weekends at the summer cottage, where all the window panes had to be replaced with panes of unbreakable armored glass.

As an adult, 30 years later, Freya can still remember this horrible time at the residential home and the abuse she was subjected to. At the same time, she says she cannot remember a single person who was nice to her during those years. And she was not allowed to attend the school at the home. All she remembers are dark basements, cold showers and birch. When, by the age of 12, these punishments had not had the desired result, she was sent to a psychiatric clinic for young persons, which was the start of the life that has given her her “many faces".

At the psychiatric clinic, Freya was given large doses of psychotropic drugs. Her despair grew, as did that of her parents. The little child who had been terrified of being away from her parents was now among yet another set of strangers, who had new ideas about who she was and what was good for her. The fact that she was tearing her clothes apart led to her being moved to an adult clinic. Her parents complained to all the appropriate authorities, but to no avail. Freya's life became more and more limited - she was tied down hand and foot and finally she was transformed into a drugged vegetable with no life and no “face" other than the one given to her by others.

Since there was no hope that her care would improve if she stayed in Sweden, her parents went abroad to find better care for her. Freya was given new “faces" at several clinics. Her parents had been led to believe that there would be miracles, but instead the care given was much like the care she had been subjected to in her home country. The doctors had theories about severe relational difficulties and her parents were kept away from her for long periods of time. This made Freya completely isolated and she no longer wanted to take part in any of the activities she had enjoyed earlier, for example reading and math.

Before everyone gave up and she was sent back to Sweden, Freya met a therapist who became very important to her. They spent several years together in Sweden and even today M. is one of Freya's pen pals. They correspond in Italian. M's husband is one of the caregivers who still attends to her and who has known her since she was in her early twenties. She has had many diagnoses: hysteria, early disorder, symbiotic psychosis, schizophrenia and many more.

The beautiful, intelligent and, in her early life, seemingly ordinary child was no longer a child and no longer ordinary. Now, she was a dangerous, enigmatic, mythical patient in closed psychiatric care and might have remained there if it were not for two events which occurred within a couple of years of each other.

The 1986 Act Concerning Provisions and Services for the Intellectually Handicapped came into effect and, at the request of her parents, the neurologist and autism researcher Christopher Gillberg was able to examine Freya to try to arrive at a new diagnosis. This time, she was diagnosed as a person with autism. Under the new Act, this new diagnosis entitled her to special care. She gained access to a new educational facility called “The Special School for Intellectually Handicapped Adults" and a teacher began coming to see her at the clinic.

Today, Freya is an adult woman living behind high fences, behind doors which always remain locked, and in a room which all of us who are living in the world outside would call a prison cell. Next chapter is her own account of what her day is like.

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A Day in Freya's Life

I wake up at six o'clock every morning. I sleep well at night and I am well rested by then. Then I have my poop ritual, I have a problem with that, so it takes half an hour. I don't have a toilet, just a hole in the floor. I became frightened of toilets as a child and that is why I don't have one now either.

Then I go through all my bags. I have three bags and in my bags I keep my notebook, where I write down all the things I have to remember. I also keep the addresses of all my pen pals and other important papers in my bags. And my vanity bag. It is important to me to make sure that everything is where it should be before I go out. At seven o'clock, I have a bath in the bathtub. I like taking a bath. At seven thirty, I go out into the exercise yard for a while. At seven forty-five, I have breakfast - always muesli, cornflakes, low-fat yogurt, two slices of bread and coffee. I always eat the same amount because I'm very concerned about getting fat.

At eight forty-five, I brush my teeth and then I have a rest. On Tuesdays and Fridays H. comes to give me an English lesson between nine fifteen and five past ten.

Between ten and twelve I walk around in the exercise yard. On Wednesdays and Thursdays I have something to do while I am outside because Eve comes to see me - that's fun. The other mornings I walk around wishing I could go on leave. I'm hardly ever granted leave these days, because my dad is disabled now. Sometimes the staff play soccer with me, but most of the time I'm just nagging them about wanting to go on leave.

At noon I go inside to have lunch. It has to be low in calories, I don't want any fat. I don't want too much bread. Lots of vegetables is good for you.

Between twelve thirty and one thirty I have a rest. Then I have my afternoon coffee - a cup of coffee with bread and a vegetable.

Between two and four thirty I am out in the exercise yard again. Sometimes one of the priests come here. Maybe once a month. There is Father R. and the Protestant minister H. They usually read me something or talk with me.

At four thirty I have dinner. I wash my bowl myself after each meal. Then I have another bath. That is what I like the most, next to going on leave. I want to visit my parents' summer cottage or go home to their house. I haven't been there since the eighties. Then I broke some of the dolls…I had thirty of them and you don't need that many anyway… and then I wasn't allowed to go home anymore.

From six o'clock until seven o'clock I write letters or do some crocheting. Then I have a cup of coffee and go to bed at seven thirty - unfortunately, I am tired by then. I don't think it seems normal to sleep that much. Or is it normal?

On Wednesdays I am allowed to phone my parents, the doctors won't let me phone more often than that, even though I would like to. On weekends my parents come here - sometimes on Saturdays and sometimes on Sundays..."

This is how the days go by in Freya's structured life, with the only interruptions being a few visits, letters from a handful of friends, special education lessons and counseling sessions with the doctor and the English teacher - the therapist. In addition to the fact that there are very few events in Freya's humdrum days, she also has very restricted access to “things". The head of the ward where Freya lives gives us the following list of items which Freya comes into contact with during an ordinary day in her present life.

Between
six and seven a.m.
she is provided with:
  • 2 pieces of sugar-free chewing gum
  • a washcloth
  • soap
  • toothpaste
  • ointment
  • a rubber glove
  • a sanitary napkin
  • a T-shirt
  • a bath towel
  • underpants
  • socks
7.15 a.m. She is given outerwear and shoes
7.45 a.m. Her breakfast is brought in and she gets 1 rag, 2 blankets and 1 washcloth. Then Freya is let into her room from the exercise yard.
9.50 a.m. She is given outerwear and shoes to wear for her walk.
12 noon Lunch is brought in together with 2 paper washcloths and 1 blanket, before Freya is allowed into her room from the exercise yard.
1.30 p.m. Afternoon coffee and outerwear and shoes.
4.30 p.m. She gets:
  • a blanket
  • a pair of pajamas
  • a bath towel
  • a washcloth
  • a paper wash cloth
  • toothpaste
  • ointment
  • pieces of sugar-free chewing gum
  • pieces of writing paper
  • envelopes
  • soap
  • sometimes shampoo and conditioner

T., the head of the ward, tells us about the interaction between Freya and the staff at the clinic. Usually, she paces back and forth and talks to the staff when she is in the exercise yard. Sometimes she plays soccer with them, or reads, and sometimes the staff join her in the exercise yard so that she will not completely get out of the habit of being with other people.

The conversations are centered around medication, her weight, the horrible treatment she has received at various institutions, and that she wants to be allowed to go to the country.

The staff think that the evenings are her most harmonious time. She spends them mending clothes, writing letters and watching TV if there is something on that interests her. The TV is behind an unbreakable window.

The following is an example of one of her planned and regular activities each week - a morning special education lesson at the end of January of 1996:

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Freya with her teacher Eve on a Wednesday between ten and twelve

First, in the Cage Olympics, Freya runs two laps around the exercise yard holding hands with her teacher. On these occasions, one of the staff is always standing by the open gate to the exercise yard, in case Freya feels like making a detour to the other side. After the run, the two slow down and walk two laps, still holding hands. Freya might say that it is hard to be that close to somebody. She might say she would like to go for a walk in the park outside the clinic. In that case, her teacher will answer: “Right now we are not allowed to go for a walk together in the park… first we have show that we can manage a walk here inside the cage… maybe we will be allowed to go to the park again…later…"Then they continue their Olympics, climbing rocks, climbing up the icy slope and falling back down, playing hopscotch and doing gymnastics. When they have finished all these activities inside the exercise yard, the teacher walks out and the hard-working student is rewarded for her patience with some stickers. When she has collected 50 stickers she receives a wonderful prize. This time the student has decided on a very special reward, which she does not want to tell the reader about yet.

The lesson continues with the student and the teacher each on their own side of the fence. After the strenuous exercise in the yard, it is time for some singing: songs, ballads, ditties.

At eleven o'clock, it is time for medication for both the teacher and the student. Freya swallows her Anafranil pills and the teacher inhales her Bricanyl and the lesson continues with some word games.

Then it is time for reading texts. At the end of January, two texts are on the program. One is a chapter from the life of Kevin the “Cage Boy" at a psychiatric clinic, where he spent time as a mutist, describing how he was brought out of his silent existence by a teacher. The second text is more factual, and deals with the human senses. On this cold day, Freya reads about how the blood vessels in the peripheral parts of the body contract to protect the vital organs in the trunk. The information conveyed by the text can be felt in the toes and fingers of both the teacher and the student.

Tomorrow I am going to Lund and CERTEC to select Freya's computer equipment. Ever since the talk about computers began, Freya has been trying to understand what her computer would be good for. She knows that you can use it for writing, and that it can contain her English, German and Italian dictionaries, and that you can do fun stuff with it. But - can it predict when she will be well, too? Can Bodil stop time? And this leads to a discussion between the student and the teacher about the possibility of stopping time when Freya is on leave at her parents' summer cottage in June:

Eve: Tell me what it will be like when Bodil stops time.
Freya: Then we'll first go for a ride in the car, in the transportation service car or in my mom's car, us and mom…
Eve: Just us?
Freya: …and dad too… and then when we arrive at one thirty… when we left here at twelve thirty…then the time will be one thirty…
Eve: And what will we do at one thirty?
Freya: We will stop all clocks at one thirty … then time will stop.
Eve: How will everyone else know that time has stopped?
Freya: Just like daylight savings time.
Eve: What about daylight savings time?
Freya: You do the same thing that you do with daylight savings time.
Eve: What do you do?
Freya: That everybody gets to know.
Eve: How does everybody find out?
Freya: In the paper or on TV like with daylight savings time…
Eve: Yes, that's it, that they will say that there is no time after one thirty tomorrow.
Freya: (laughs) Yes.
Eve: And then they will broadcast it to the whole world. Or do you want time to stop only in Sweden?
Freya: To stop everywhere.
Eve: In the whole world?
Freya: Yes.
Eve: But then it has to be at one of those moments when you don't feel afraid of me.
Freya: Yes, I'll take my medication first.
Eve: But what if the medication stops working?
Freya: No, it will be everlasting medication, and then it will have to keep working.
Eve: Right, because nothing will be happening after time stops.
Freya: That would be fun … that we will go for a trip then…
Eve: Will we stay the same age for ever then?
Freya: Yes, that will be great, so that we can live forever.
Eve: But what if the moment will be just like this morning here inside the cage…
Freya: No, that won't be good.
Eve: …and you will say “no, no, now Eve had better leave"… what if it is a moment like that …then you would have to be afraid of me forever.
Freya: (laughs) No, that won't be good.
Eve: No.
Freya: But if time stops at one thirty, then it won't be hard, it's when I am going back that it will be hard…but if time stops at one thirty then I won't have to go back… and in the lake it will be fine.
Eve: Yes, as long as we can be swimming in the lake it will be fine.
Freya: Yes, and when I come home at one thirty I go for a swim and it's good if time stops when I am in the water.
Eve: What if we'll be staying in the water forever?
Freya: Then we'll turn into fish… or fish people.
Eve: Yes, all living creatures originated in water and what is there to say that we couldn't return to living in water.
Freya: (laughs) That would be fun.
Eve: How do you think we will develop there in the water?
Freya: Nothing would develop.
Eve: Would you be happy with that kind of life?
Freya: Yes, it is better than living here.

The teacher promises that she will ask Bodil to stop time at the right moment and before saying goodbye the two - the teacher and the student- can be seen stamping their feet, mumbling strange spells and making strange movements. The only words which reach the reader are “power turns into knowledge…blow on the fire…blow on the fire!"

The slender, dark woman who remains there behind the fence when her teacher leaves at noon has been given many epithets in many hospital records. She has been called one of the most dangerous psychiatric patients in the country and been surrounded by rigorous security regulations. And yet she has never knowingly hurt anybody. She has not robbed or murdered anybody, and yet she is sitting there in her locked cell behind high fences. The care services have given her the “face" she has today behind that fence. The care services have given the child who was terrified of being separated from her mother at least 300 different caregivers, numerous doctors, and other experts which have all had their own theories and ideas about who she is and why.

The National Board of Health and Welfare is the body which has the ultimate supervisory powers in the area concerned and has approved the care described above. An inspection report from 1993 contains the following statement: “…because of her psychological condition the patient has been subjected to coercive measures in that she has been tied down. It was confirmed that because of her aggressiveness and impulsive behavior, the patient has often had to be restrained…Tying the patient down by means of a belt requires the participation of many staff members and often involves a lot of commotion. Attempts have been made to introduce various reward systems with the agreement of the patient in order to minimize unwanted behavior and avoid coercive measures…Attempts have been made to spend time with the patient in the exercise yard. This became impossible because of the patient's inability to control her urges to harm and hurt those around her…The National Board of Health and Welfare is of the opinion that there is no cause for criticism of the manner in which the care has been administered and in which coercive measures have been used…"

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Autism

It was only as an adult that Freya was diagnosed as being “autistic". Autism has long been a charged concept within psychiatry. It has made feelings run high because of a lengthy battle about what causes it.

The term “autism" was first used by the psychiatrist Eugen Bleuler in 1911 to describe the difficulty experienced by schizophrenic patients in mixing with other people. By this he meant that “autistic" people isolate themselves from social contacts as well as the world around them to such an extent that it could be called self-absorption or autism.

However, this kind of autism has nothing in common with the disorder which was given the same name by Leo Kanner in 1943. At about the same time as Leo Kanner described children with interpersonal difficulties and a great fear of change , Hans Asperger in Vienna made the same observations. He diagnosed this group of children as sufferers of “autistic psychopathology". But his work did not become as well known as Kanner's and it is only in recent decades that it has come to the fore. Today, Asperger's syndrome is the term used for intellectually high-functioning people with autism. So far, however, this term is used only in Europe, while in the United States this group of people are referred to as “high-functioning individuals with autism". Kanner assumed that the autistic disorder was congenital and that it manifested itself as an inability to establish emotional ties to other people and was present from birth.

Therapists who were more oriented towards psychoanalysis took the aspect of emotional isolation as the starting point for the development of theories where the disorder was seen as the result of a disturbed relationship between mother and child. According to these theories, the child “chooses" autistic loneliness as protection against the pain of being treated coldly by her mother. Margaret Mahler spoke about the very early period in a child's life as the “normal autistic phase". She believed that the infant needed this isolated existence as protection against sensory impressions, which otherwise might become too intrusive. Children with infantile autism, which Mahler calls “infantile psychosis" do not enter the next phase - the symbiotic one - when the mother herself, in this symbiotic relationship, becomes the protection the child needs against the outside world. This symbiotic relationship prepares the child for a gradual identification of a “self" and “non-self". According to this theory, the autistic child is stuck in, or has regressed to, the first phase of life - the “normal autistic phase" - and is unable to use an “auxiliary self" to develop further.

Since Mahler's “On the Human Symbioses and the Vicissitudes of Individuation" was published in 1968, autism research as well as infant research has developed quickly and has disproved the theory of the “normal" autistic phase. Mahler herself rejected this part of her theory before her death.

According to more recent research, the infant, from the very moment of birth, is an active participant in a dialogue with those around her. An autistic child, however, lacks an innate ability to interpret and answer signals from those around her which indicate a desire for contact.

As research about autism has progressed from this embryonic stage, the disorder has been seen either as a perception disorder or as a cognitive disorder, but, on their own, none of these theories has been able to explain the complicated picture of symptoms in people with autism.

The long-prevailing view of autism as a disturbance in the mother-child relationship has led to the creation of various psychodynamically-orientated therapies for “curing" autism. The most well-known examples of these are probably Bruno Bettelheims descriptions of some child therapies in “The Empty Fortress".

It is now generally accepted that the autistic disorder is a neurological handicap, but remnants of the old theory of an inability to form relationships can still be found in the psychiatric care services (it seems to be particularly common in adult psychiatry) and sometimes among child psychotherapists.

To the extent that psychodynamically-orientated therapies can be used for people with autistic disorders, the therapy relates to secondary disorders, from which the person suffers because of her severe difficulties in forming relationships and her special way of thinking.

A person with autism, who does not find out what the handicap means and who perhaps has not even been diagnosed until adulthood, must wonder a lot about her inability to manage the simplest situations in her daily interaction with fellow human beings. These feelings have been described in an excellent way by Anne Carpenter in the chapter “Personal essays -autistic adulthood, a challenging journey" (Schopler & Mesibov “High-functioning individuals with autism", pp. 292-93):

…there was still no answer as to why I lost one job after another, why I was so inappropriate in social situations, and why I behaved the way I did. Was it some as-yet-unnamed neurological problem that had been lurking in the shadows for years? No one was sure what to do about it. I had been assigned many labels: mentally retarded, emotionally disturbed, borderline personality disorder, aggressive personality disorder. But those labels were only a shot in the dark…"

Then she was diagnosed as a person with “autism", and she describes her thoughts about the diagnosis as follows:

Now that there was a name to that monstrous problem I had been carrying around for years, maybe I could find ways to eliminate at least some of the odd and socially unappealing behaviors."

It is obvious that a person who has been diagnosed as suffering from so many different disorders has great difficulty in coming to terms with herself even after being diagnosed as a person with autism. Educational and therapeutic guidance from professionals who understand this cognitive disorder and the consequences it has for the individual is essential, but it is extremely important to make clear what it is one wants to address with these therapeutic measures. It should be indisputable that the basic symptoms cannot be cured with psychodynamic therapy.

On the other hand, there is testimony from teachers in Sweden and abroad to the fact that it is possible to increase the understanding of other people, of social situations, etc., in people with autism. For about 20 years, there have been educational activities for children and young people with autism within the special school system. Today, there are special classes in the regular elementary and high schools, as well. Growing knowledge about the nature of autism has also meant improved educational methods.

At present, there is a sizable amount of documentation about teaching children with autism, but the literature which is concerned with adults is mostly about psychological and neurological tests which have been performed on patients in psychiatric care. There are also some relatively newly published autobiographical accounts by adults with autism, which describe what it is like to live with this handicap and how they have managed to overcome the worst of their difficulties. The most well-known of these is Temple Grandin's “Emergency - labeled autistic".

Descriptions of educational approaches for adults have been developed at Chapel Hill in North Carolina - the so-called TEACCH approach, which is used in Sweden as well.

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Teaching students with autism

All teaching begins in a meeting between two individuals, teacher and student, where the teacher's intention is to impart new knowledge to the student, which is received by the student, interpreted and then integrated with existing knowledge and with the result that the student has a broader view of herself and the world around her.

In order to develop a useful educational method, each step in this chain, from the meeting between teacher and student to the final integration of new knowledge, must be analyzed. When the student in question has an autistic disorder, the problems start with the meeting itself, since the autistic individual is unable to interpret social signals correctly. One also has to keep in mind the student's atomistic perception of the world around her, where the focus is on details which makes it difficult to see the whole picture.

Interpreting and processing information is another difficulty the autistic student faces. She does not have a coherent picture of herself in the world and finds it difficult to create inner conceptions at the levels where abstract thinking must be used. She cannot reflect on her own or other people's thinking and actions. This means that the discrepancies which occur between the autistic person's view of the world and that of others is not automatically dealt with by her own ability to find the source of the disagreement. It may even be hard for her to perceive that there is anything wrong. Life consists of endless surprises where it is difficult or impossible to understand the chain of events. In order for the autistic person to find explanations for her complete inability to understand correctly and react appropriately in our world, it is essential that there are people who have knowledge about autism and who can explain and provide alternatives. It is also important to understand the culture shock between the autistic individual's emotional reactions and those of the dominating culture before taking on a student with autism, who has grown up in her culture and has not been given training in the social and emotional rules of our culture.

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A First Encounter: The Walk Begins.

It is the beginning of October of 1992 and I am about to meet doctors and care services staff at the clinic to receive essential information about my student. She has been diagnosed as autistic by Christopher Gillberg and it has been determined that her care is the responsibility of the Disability Care and Habilitation Services Board. The psychologist of the Autism Association had tested her, and two psychologists from the care services had been involved in her registration with the Board. According to their assessment, her need for special care pursuant to the Act Concerning Provisions and Services for the Intellectually Handicapped of 1986 meant being provided with a special adult education teacher, since her schooling had ended on her second day of school and she had not received any formal education. So I became her teacher and entered, for the first time, the small, specially-built brick house with the exercise yard at the back. My student, aged 36 at the time, was, and is, living behind locked doors in the way she has described above.

On this, my first day at the clinic, we decided that I would meet Freya in the exercise yard for 80 minutes every Wednesday. It was considered to be impossible to engage in any activities which lasted longer than that with this patient. Freya was described to me in the following terms: - “a patient with schizophrenia who is obsessive, aggressive, unpredictable, very dangerous and who, in addition, has poor language comprehension and a small vocabulary and whose knowledge of the world around her is very sketchy". She had all these problems despite the fact that reading was her favorite occupation. She read long texts mechanically, without paying attention to what she was reading. This phenomenon is known as hyperlexia in many high-functioning individuals with autism.

After hearing this description, I regretted becoming involved in this project at all, but it felt shameful to back out at this point. I was too shaken up by the description to ask about her autism. After all, I had come to the clinic because I had extensive experience of students with autism. The questions had to wait…

There were a couple of other people who were working with Freya - another teacher who held therapy sessions with her in English, since it was believed that she needed a new language for dealing with her emotions. The three languages she already knew, were thought to be marked by negative events. In addition, there was a physiotherapist who had been working with her for about a month when I started my work. There were eleven nursing assistants. Four or five during the day and fewer during the night. A senior physician and a ward physician were responsible for Freya's specially-built house and for a ward for patients with psychoses. Before meeting the patient/student, I was sternly told not to get too close to the fence, to be prepared for sudden outbursts, having gravel thrown at me, etc. For several days, I thought about what would be the most suitable thing to say when meeting a person who, according to what was described, completely lacked human characteristics. Are there any human words, any way of communicating which will reach her? What are the words which would make it possible for us to develop our time together in various directions, according to varying needs? They must not lock us into a groove which would be hard to get out of. I spent time thinking, practicing, rehearsing as if it were a grand opening…

The day arrives when I am to step out onto the strip of gravel which runs along the fence around the exercise yard. There, I will be walking on the strip of gravel on my side and she will be walking on her side. I have a small garden on my side, she has a big lawn, a slope up towards a small oak-clad hill and, beyond that, a small oak grove where a couple of mighty fir trees have made their way in and loom dark and tall. In some of the oak trees there are bird houses…

A thin, dark woman with a stiff, mechanical walk, strides up to the fence and says “hi", looks me over for a couple of seconds and then tells me that we can't stand still, she has to be moving constantly so she won't get fat. These are the words with which our walk begins, a walk which by now has lasted more than three years, and I pronounce my well-rehearsed words “I can tell you about people…about people who were in this world long before us… I can tell you what they did… what they told each other, what they sang, how they danced…"

Her immediate answer is “that sounds interesting - tell me!" So I start telling her - first about the forces which once, in the beginning of time, were whirling around in the universe, forces which had not yet assumed their shape … forces which were attracted to each other…rejected each other and, finally, the powerful forces were concentrated into what became our world, the earth, the sun, the moon, the planets…

While I was trying to communicate all of this to her, she kept her monologue going about how the senior physician who had locked her up in this cage must have been crazy or drunk, because she could manage on her own if only she were aloud to move out into the forest and live in a trailer. Then she would bring her male friend and they could get married. He hadn't showed up for over a year and hadn't answered her letters, but she was convinced that he would turn up when she moved to the trailer. (Later, the nursing assistants confirmed that he did actually exist). She walked stiffly, like a mechanical doll, back and forth along the fence, the gravel crunching beneath her feet, her monotonous sentences going on and on…and suddenly a shower of gravel hit me. Without me understanding how it happened, she had bent down and grabbed a handful of gravel, which I was now trying to shake off my clothes. She was remorseful right away and tried to excuse her behavior by saying that I was a new acquaintance - that she had difficulty with new people…

I was still going to come back, wasn't I? …She couldn't help it…she had such a terrible disease which made her do it…she wasn't to blame…nobody really knew what this awful disease was that she was suffering from…it was a mystery to everyone…but she would manage just fine by herself, if only she could have a trailer in the forest…

So her thoughts went on and on again and I had to try hard to get through to her. While we were talking she made a point of us keeping our distance from each other on each side of the high fence. If I got too close, she would admonish me: “Don't get so close!"

This first walk, which I had been so worried about, was also a relief. Even at this early point, Freya felt like an old acquaintance - a person with autism - and this made me more confident about how our walks would develop.

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The Walk Continues

During our two hours of lessons per week the walk took on the following pattern: Reading a text about the origins of life on earth and the first humans - the text glued onto both sides of three pieces of cardboard. The texts were deliberately kept short and used a vocabulary she would easily understand. Each time I introduced a few words which might be more difficult to understand so that, gradually, she would learn that texts are to be understood, not just read out mechanically. Each sheet had one or more pictures and was covered in plastic film. The idea was that they would be hard to rip up. She was in the habit of ripping up everything she had read. She did not rip these cardboard sheets up right away, but collected them and brought them into her room. She did tear them up later, but at least the tearing up was postponed for a while. She thought the texts were too short and constantly asked to do more reading, but I wouldn't agree to her mechanical reading of unintelligible texts, so I kept to the three cardboard sheets for the whole of the first semester and for part of the second semester. Instead, we started to do dancing when we had gone so far through the history of mankind that there were hunters, and the river people had begun growing crops in the fertile soil around the Euphrates and the Tigris and the Nile. I created the dances myself to simple melodies. The “Bear Dance" only had singing, while “Prayer for a Successful Goat Hunt" was accompanied by the sound of a drum, and “Song to the River" had singing and recorder music as accompaniment.

For a long time, it was extremely important that I keep my distance from the fence. It was only when, in the most suggestive voice I could muster, I told her about how the night fell as the hunters were sitting in their huts in the evening…there was no light…the fire had not yet been invented…the bears and the wolves were howling outside…and how do you think they felt? that, for a few moments, she would forget about keeping her distance and almost cuddle up to me on her side of the fence.

Her constant monologues, when she went on and on about life in the trailer and her marriage to Kennet once they were free, were hard to endure since it was often impossible to interrupt her or introduce a new train of thought once she got started. So I told Freya that people would often write short stories about things they are dreaming of doing in the future, but which had not yet come true. I asked her if she thought it might be a good idea for us to write short stories together about her dreams for the future. The suggestion interested her and I decided that all the talking about trailers, a possible fiancé, and her freedom out in the countryside would take place during the last half hour of our lessons. This is how we started writing the collection of short stories entitled “The Trailer" - one story a week for 31 weeks.

Into these stories, I was able to bring material which I could not otherwise bring up. At the entrance to the house, there was a large sign

To everyone who works in Villa X! Nobody is allowed to speak to Freya about food!"

In the first part of the “Trailer" a lonely wanderer is walking through the forest and notices the smell of smoke. He reaches the trailer and sees a man sitting by a fire barbecuing hot-dogs. The man says that his wife will not allow him to eat high-fat hot-dogs, and that is why he is cooking outdoors. The woman is brushing carrots inside the house…

Writing these sentences in the very first chapter felt as uncertain as throwing oneself headlong into the unknown, but it worked! She did not recognize her talk about food when it was expressed in this form and she let it pass. Finally, she did not even remember having forbidden everyone to talk to her about food. We would talk about new chapters in the story and we needed to discuss how she would get food for herself and her husband. What would they buy, how would they do it, etc.

At first, these stories described the practical details of what they would do, what it would look like inside and around the trailer and, in general, what one would do when one lived like that. Each story contained one or more thoughts that she wanted to try out. I wrote a little story for her about these thoughts, and she was able to see how a small thought can become part of a larger context and acquire a meaning. At the same time as these discussions and writings went on, we continued studying the history of man and I combined the texts from the cardboard sheets into “The Book of Mankind", which became a long walk through distant cultures and times. In the middle of winter, we studied Egypt. As we were walking, each on our own side of the fence, the snow was crunching beneath our feet. Our breath froze, our hands froze, our feet were stiff, but we were dancing and singing about the waves on the Nile. We read about the Pharaohs' slaves, who were carrying stones for the pyramids through the desert and Freya suggested that we should go to Egypt for a holiday. Now, we had a way of doing that despite the fences and padlocks! In the next chapter of our trailer story, we let the protagonists start planning their trip to Egypt and a couple of chapters later they were there! When Freya discovered the possibility of creating alternative worlds with words, she started using it to take her revenge on her disloyal friend, who had not been in touch for so long. She wanted me to let him disappear somehow and we had to figure out how. A while later she wanted him back and got him back in the next chapter. New thoughts and new ideas could be tried out and Freya became very good at making up new plots. Events in her own life, which had been hard to deal with, were blended into the stories in different ways, but now they could be controlled because they had the form of fiction.

Freya was also in the habit of yelling at everyone who walked in the park past the exercise yard: “Blow this house up at midnight!" She talked a lot about explosions and sometimes about wanting to die. She would describe it as a cloud descending from the sky and bringing her to heaven. These wishes became a natural part of her stories.

Her stiff, robot-like way of moving began to change, her face became more alive, and more and more new thoughts were given room among the ones that had kept going on and on…In the wintertime there was no gravel that she could shower over me. When the snow melted in the spring we started working on a short play. I suggested that we would do a play where we did not play ourselves but took on somebody else's role and I asked her if she could think of anybody she would want to be. She answered “Snowman", and I decided I would be a crocus. The crocus was longing for the sun to come and melt the snow, while the snowman wanted it to stay. He did not want to melt away and leave room for the crocus and with her lines “I object, I object!" and “just you wait 'til next winter!" Freya began practicing speaking her sentences with a melody and the right emphasis, where previously her language had been monotonous and lacking prosody. At the same time, it was a dialogue where we had to listen to each other's lines.

When the snow had turned into puddles and the crocus had defeated the snowman, a new thought began to awaken in Freya and one day in March she asked me: “Can you and I go for a walk in the park? I think I am able to do that now." I discussed it with the nursing assistants and they promised to see to it. This was the beginning of a new chapter in our relationship. Moreover, after Christmas, we had increased our time together to 80 + 60 minutes a week. Now, our Wednesdays would begin with a walk outside the exercise yard.

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The Walks in the Park

On our first walk we were accompanied by two nursing assistants who had a cellular phone with them in case they needed to call for help. Freya and I walked with an arm's length between us and she was constantly checking the distance by quickly glancing at me. She had brought all her personal belongings, which she kept in a big plastic bag. We were walking along the path and the people we met were told to “blow up the house at midnight". As we were walking on the path along the hedge which has an opening to the street, Freya suddenly leaped towards the opening, trying to escape. The nursing assistants quickly overpowered her and we went back to the clinic.

The following Wednesday, I prepared the park in advance. Knowing that Freya wanted to have as much text to read as possible, I put up on the trees pieces of paper with different kinds of texts on them. Since I knew that people with autism have difficulty switching their attention from one thing to another, my intention was that the pieces of paper would grab her attention and distract her so she would not think about running away. Near the opening in the hedge, I put the pieces of paper on the oak trees which were in the opposite direction. Would she choose to read more, or would her instinct to flee be stronger? Freya knew that there were nine pieces of paper in the trees and she was concentrating on finding all of them. This time she did not even glance at the opening until we were on our way back.

Having this prepared track in the park meant that we could keep going for a ten minute walk once a week until the summer. Freya was very particular about always having the same number of papers and she never wanted to read them until she got back to the exercise yard. Sometimes she would make a lunge towards the opening in the hedge, but stopping her was getting easier. In time, as she became less afraid of walking next to other people, she would ask jokingly, at the critical place: “Let's run away, you and me!" and she would laugh at all the things she was offering me: “I'll give you a thousand kronor"… “I'll take you out to dinner!", etc.

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A Mysterious Disease

In these early months of 1993, Freya also started asking about her horrible illness. What was this mysterious disease which had forced her to live her life in isolation from the rest of humanity? Didn't it have a name? She had been told she was schizophrenic and she had been treated with all kinds of psychotherapy, but nothing seemed to help. Did I know anything about this illness and could we start reading about the brain, so that she could find out what she was suffering from by doing her own research?

I spent two evenings putting together some material about the brain, some information about how the brain functions, and stories about people whose brain made their lives difficult in various ways. She read about the man who mistook his wife for a hat. How interesting! She read about the woman who had lost the ability to feel her body … “but, for me it's exactly the opposite, I feel my body too much… it hurts when somebody touches me… sounds hurt…" The following week, it was time for stories from the life of Temple Grandin, the autistic assistant professor from the United States who has written about her life in “Emergency -labeled autistic".

When Freya read about little Temple on her way to the family cottage in a boat, the whistle blowing and Temple having an attack and just screaming, she was genuinely surprised - “that's just like me …I didn't know there were others who have the same illness as me … what is it called?

The following week, we started that week's story like this “The 40-year old assistant professor from Colorado who tells us about her life as a person with autism…"

By writing these words I was breaking the unspoken agreement at the clinic about not mentioning Christopher Gillberg's diagnosis. The feeling was the same as when I started writing about food in the stories about the trailer - a walk straight into the unknown…

When we were reading, Freya confirmed that “they tell me that I have autism, too" and we agreed that I would look for as many stories as possible about people with autism. Finally she had a name for her mysterious disease and we were able to begin talking about the fact that it is a lifelong disability caused by a neurological disorder. No medication can cure it, but medication may be able to reduce the symptoms of autism. And there are other ways of learning how to live with it that will make life easier and more comprehensible.

On the basis of what Freya recognized as her difficulties, we devised a plan for our work in the following areas:

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Social interaction

For practicing social interaction I put together a program called “Social Interaction" which begins as follows: “Social interaction - you have seen these words many times when we have read about autism. People with autism find social interaction difficult. One of the serious problems people with autism face is that they don't know how to understand other people and interact with them."

Next, comes a picture with the following text:

This is one individual alone. One individual alone does not have any social interaction. It takes more people. A single individual has her thoughts and inner pictures but she has nobody to share them with. It gets lonely when you only have your own thoughts and you don't get new ideas from other people. If there are more people, you can meet and exchange ideas. The way it works is that one person tells the other person her ideas and thoughts. The other person listens carefully to what the first one says and tries to answer her. Then it is the second person's turn to talk and the first person's turn to listen and answer. Now, we will practice exchanging ideas.

We took turns telling each other some of our thoughts, listening, and answering.

We practiced telling each other about things that were happening now and things that had happened to us in the past. Freya found it very difficult to think of topics.

When she started out with one subject her thoughts would get stuck and it was difficult for her to move on. Often, she would say: “My thoughts are so few…". Sometimes, she told me that some thoughts constantly came back and suppressed any other thoughts she had. The most persistently recurring thought was that she must not gain weight.

After practicing exchanging ideas for a while, we expanded our program to include the next step:

Now there are more people. People being together is called social intercourse. To be able to be together with other people you have to be interested in finding out something about them. This is hard for people with autism, but they can learn how to do it. How do people get to know each other? In the first place, they have to meet. Then they have to say something to each other. The things they say have to conform to the rules of social convention. Most people learn these rules as children and know what to say to each other. People with autism do not find it as easy to learn by imitating others. They have to learn what to say in different situations. Let's practice some situations where one usually meets other people.

Two people who do not know each other at all might meet on the road when they are out walking. If one of them feels like saying something to the other one, it has to be something neutral, that is, something that is not personal.

In such a situation it is not suitable to talk about explosives, to ask somebody to marry you, or say something else which is not appropriate to the situation. These are some suggestions for what you could say:

It feels like spring in the air…
What a lovely day!
Excuse me, have you got the time?
Winter seems to last forever!
Hasn't it got cold again!?

We used these suggestions during our walks in the park and I also encouraged Freya to begin asking the staff and Lennart, a fellow patient who had moved into her house, about their earlier life outside the clinic. But she was reluctant to do this, since she felt that she had been snubbed too many times by people telling her: “It's none of your business!" without her understanding what she had done wrong.

I added pictures of different kinds of people to the material and we began looking at what makes people different - looks, age, etc. How do you describe other features in people? What is character? What is temperament? What kind of people did she know with different types of character and temperament? What was she like herself?

We had many halting discussions about this “humanness" which was so difficult to understand and pin down. Words and thoughts and new ideas made their way in among the old ones, which had just kept going round in the same tracks - her world had begun to expand despite her isolation.

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Poems and Stories

Now that an opening had occurred, and reasoning became easier for her, Freya was able to start guessing the answers to riddles, telling jokes, trying to understand comic strips, observing the world and writing poems about it. The first poems Freya wrote followed a pattern which I had devised: “I see…I hear…I feel…". The first poems were very concrete:

“I see the sun
I hear the birds
I feel the scent of pollen."

Gradually they developed and became more thoughtful. Her observations grew keener and old memories were beginning to come back to her.

“I would like to go to Italy for a holiday,
go to the yellow house…
but - most of all I want to take you to dinner…"

During the spring we completed the short stories. When we had written 30 chapters, Freya declared that she thought our stories were so good that they ought to be published by a publishing house. As her “ghost-writer" I was much more modest and promised that I would try to sell them to friends and colleagues. I wrote a preface and a final chapter in which the story, which had developed into a real tale of adventure, was given an end.

Soon after the stories were finished, we both began to miss them. And at the end of every lesson, Freya started asking me:

“Where are you going today? Can I come with you?"

This gave me a reason to start telling her about other students, about day centers, about meeting various people, about what it looked like at my place, etc.

New stories grew out of these short dialogues at the end of our lessons; stories which introduced completely new things into her life. They would always begin by Freya asking: “Can I come with you today?" and I would answer “Sure you can come. Just go and change first. Bring money for the subway, and let's go…" Naturally, in the stories she has a chest of drawers in her room, where she keeps both her wallet and her money. She has her own key to the house and all she has to do is to tell the staff when she leaves:

Bye, bye, don't bother cleaning my place today - I'll do it later when I get back from downtown… We have an important meeting, Eve and I… I won't have time to have lunch at home either… we'll have something downtown…"

In the park, she meets the senior physician and she tells him she doesn't have time for him today …important meeting…must hurry…

The ending of these stories always follows the same pattern:

I sat down at the kitchen table and waited for the food to heat up in the oven. Pussy climbed into Freya's lap. She was purring and rubbing herself against her mistress. Everything was wonderful, Freya patted Pussy on the back. She was looking forward to having her dinner on the white china with the gold edge. She wanted to use the cutlery with the beautiful brown wooden handles … but then Eve ruined everything again: “Let's turn the clock back … sorry, Freya, I'm so sorry, but this was all a fantasy…next Wednesday we will continue practicing our 62 steps around the mountain ash on the lawn…"

These new stories took Freya to many different worlds. For instance, she answered a personal advertisement so she would meet a nice helicopter pilot, who would have no trouble getting in despite the high fence around her house. The description of her meeting with the pilot lasted for several chapters.

The main object of these stories was to have Freya experience the world outside. She herself is the protagonist who gets to experience both nastiness and pleasantness in different worlds. By now she knew the principles of story-telling and she took on a much more active role in composing the stories than had been the case a year earlier when we started writing the “trailer stories".

In addition to a major improvement in her ability to use her imagination and to reason, she became less afraid of intimacy, the stiffness in her facial expression and pattern of movement was replaced by a wider range of movements, she was happier and more communicative.

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Around the Mountain Ash

By now, we needed something new for our walks in the park and the 1993 fall semester began with some new activities. There was a lawn in the park with a group of mountain ash, and there was a small gazebo which to me looked more and more like a dance pavilion - one day we would dance together…Freya often spoke of the day when we would be able to walk by ourselves in the park. To show her what that would be like, we decided that we would begin by standing by ourselves by the mountain ash while the attendants who accompanied us would stay by the road. The first day we were able to count to ten seconds - the following semester we managed 1,750 steps around the park - holding hands - but still with an attendant within reach.

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The Fat Rat

There were more difficulties to overcome! This was the right time to begin practicing impulse control!

The next step was to let Freya hold things and then let go of them without ripping them apart. The first attempt at this was the Fat Rat game. The rules were as follows:

“This is how The Fat Rat is played: Somewhere in the park there is a black rubber rat hanging on a string. It can be in any of the trees. On some of the pieces of paper you will find there will be something written which is different from what you are used to. So you will have to look at the pieces of paper when you take them off the trees. You have to check if they say something about where to find the Fat Rat or if they have the usual text on them.

When you have found out where the Fat Rat is, you are to sneak up on it without a sound and make it squeak without it falling down or breaking.

Since this is a hard game, you will get more points each time.

You will get … 2 points for sneaking up quietly and 3 points for making it squeak without it falling down or being damaged. When you have collected 20 points the Fat Rat will be yours! Good Luck!

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The End of the Walks

Up to the month of October 1994, our walks continued without any major problems. Then, a conference was to take place, attended by all the staff at the clinic, myself, and a psychologist from the care services, and Freya became worried that something awful was going to happen to her. During the two years that I had been coming to the clinic, there had been no such conference, so it was understandable that Freya was uptight. Conferences had always had a negative impact on her life.

During one of our walks she pulled my hair, at another time she kicked me in the leg and that was enough for our walks to be prohibited. Freya was unhappy - she didn't think things were that bad, and neither did I - but rules have to be obeyed and we had to keep to the rules set by the clinic!

Freya was unhappy about something else, too - she wanted to compete and win prizes. Now that opportunity was gone!

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The Cage Olympics

So that she would still have the opportunity to win prizes and so that she would use the whole exercise yard and expand her repertory of movements, we began The Cage Olympics, which continued until Christmas 1995. During the 1996 spring semester, it has been replaced by The New Cage Olympics and now it takes place with me inside the exercise yard.

The Olympic Games include the following events:

  1. A two-lap race around the lawn.
  2. Step-up onto a block of stone (5 times)
  3. Mountain climbing (up and down the slope towards the oak trees 5 times)
  4. Boink-boink (We bump into each other through the fence and say “boink")
  5. Hopscotch
  6. Jumping with both feet together
  7. Gymnastics

The spring and fall version also includes:

  1. Identifying plants
  2. Identifying birds
  3. Planting a seed

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Freya's Goals in Life

When we were no longer able to go for walks we had to fill our time with other things which would be useful for the future. We continued studying psychology, reading about the human body and about autism. We also set up “My Goals in Life" together, where Freya puts her dream of a life in freedom into words and we go through the obstacles which have to be overcome to make this life possible. Many problems remain, but we write down intermediate goals and try to accomplish them one at a time. An intermediate goal might look like this:

Freya would like to progress in the following areas during the 1995 fall semester:

Goals:

How do we accomplish them?

Goal:

How do we accomplish this?

During the fall of 1994, we began to talk about people we saw in photos and in the newspaper. The conversations were taped and typed out and have become an extensive document which clearly shows the major difficulties people with autism have in understanding human-ness.

Their difficulties lie both in being able to describe a human face and in understanding the information conveyed by changes in facial expression.

The difficulties also lie in the interpretation of the information which gives coherence to human social life, the meaning contained in exformation, that is, the information which is not completely explicit, which lies in expressions of emotions, in the hidden motives behind people's actions.

During our discussions about human situations, Freya has progressed in that she now knows that she has to look at the face when I ask her about facial expressions or expressions of emotion. At first, this was not obvious to her.

We had the following conversation about a worried-looking woman with a “Vote No"-badge:

E: How does this woman look?
F: It says “vote no". I voted no, too.
E: What do you think her face looks like?
F: Her hair is smooth up here.
E: What does her forehead look like?
F: It is wrinkled.
E: What does it mean when your forehead is wrinkled?
F: It means that you are getting old.
E: If I wrinkle my forehead now, does that make me old?
F: No, maybe she is discontented because it says “no" to the EU and the “yes" vote won.
E: But you don't look very disappointed that the “yes" side won…
F: How does my face look now?
E: Pretty neutral, I think.

Freya typically starts out a description of a person on the basis of some detail which has particular associations for her or which is particularly prominent. When I ask her about a person's face her answer always has something to do with the hair, as in the above example.

She is learning to look for the facial expression in the face, but lacks the tools for describing a face. When we are talking about noses, she will ask me “are there different kinds of noses, or …?". We compare noses, and she can see that they are not the same, but how do you describe it, what words do you use in this situation? Large, small, crooked, straight, pug-nosed, snub-nosed, hook-nosed…the words sound funny, but they are not always easy to use. The same thing happens when we try to describe eyes, mouths, chins, eyebrows. It is as if the human face were harder to describe than the surface of the moon or some other distant object.

Freya is spending a lot of her time trying to understand the visible and invisible rules which exist between people and the rules which govern her existence. The world around her seems very unpredictable - despite the fact that the scope of her existence has been limited to such a large extent. Ordinary, everyday events can completely throw her off if they do not happen according to her expectations. When the washing machine breaks down and she cannot get her clothes washed at the exact time she had planned, she gets terribly upset. When her hat has shrunk in the wash, the only alternative she can think of is to tear it apart and throw it up on the roof. In situations where Freya is surrounded by a large number of people who are listening to her and answering her in different ways and putting forward various reasons for their answers, one solution would be to give her simple alternatives on a computer screen for these recurring situations, so that the constant arguing which is so provocative and tiring for the staff would be minimized. This approach would leave the staff with more energy for taking part in more constructive activities with Freya. Freya becoming computerized would afford other advantages as well. For the first time in her life, she would be able to influence something herself. She would also have an opportunity to decide when she would like to use various programs. A project like this would not be easy to carry out, there are many problems which need solving, but I still believe it is worth a try.

I was spending more and more time thinking about Freya becoming computerized, but I had no idea of how to go about making it reality.

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The Future

The time I have spent with Freya behind the fence surrounding her exercise yard has transformed her from an aggressive and dangerous patient into an individual with a serious lifelong disability who is fighting to live a life sometime in the future which is as normal as possible under the circumstances. She has found a name for her disability. Through her reading she has acquired knowledge about it and she knows that there are ways to learn to live with it. The road ahead is long and difficult, but now she has hope. Nobody can live without hope! Freya has new thoughts and ideas. She has learned quite a lot about the mysterious social sphere which exists between people, although she will never understand it completely. Freya has learned how to reason, to be more patient, to joke and to dream about the future. She no longer reads as mechanically as she used to, but rather wants to understand what she is reading. She is gradually becoming less obsessive. It is possible to get much closer to her than before. She does not mind me being in the exercise yard during the Cage Olympics. She does not mind holding hands while we are walking.

Sometimes, she keeps books for a long time before tearing them up. She has had her little Sofia for more than a month and takes good care of her. Sofia was one of the prizes she won in the Cage Olympics just before the Christmas holidays in 1995. She had wished for a little doll and Sofia was introduced to her in this way:

“Freya! I was looking for a doll, but I found a child. You must take very good care of this little girl because she is afraid of so many things. Perhaps she had a frightening experience when she was even smaller, perhaps her senses are unusually delicate…I'm not really sure. All I know is that this is an orphan who needs a mother to take care of her. Take good care of her, give her a beautiful name and think about how sad she will be if her stand-in mom isn't nice to her…"

The psychiatric care services are being reorganized, which means that Freya will not be spending the rest of her life in the house with the exercise yard. This time there is an opportunity to plan something with Freya's needs as the starting point.

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What are Freya's Needs?

Above all, it is important to realize that the needs which every “normal" person find important and basic, are just as basic to a person with autism. It is important to be respected as a human being by having the opportunity to influence your own life and having your basic needs for security and stimulation fulfilled. In addition, a person with autism has special needs:

The care provided for Freya today in her specially built house is not cheap. It costs 4.2 million kronor (approx. $500,000), of which 3.8 million covers staffing costs. This sum includes the care provided for two other patients, but Freya's share is more than half the total. It should be possible gradually to reduce the cost with carefully planned specialized care, based on the autism perspective, which includes meaningful activities and an environment which is stimulating physically and mentally.

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An Encounter between Psychiatric Care and Education

My work with Freya takes place at a clinic where I arrive from the outside, from a world with rules which are different from those in the psychiatric care services. Up to January 1995, my world consisted of the Disability Care and Habilitation Services Board which was responsible for special schools for adults. Now, the Municipal Education Board is responsible for these schools. How will the fact that two systems are meeting in this way affect my work?

My work with Freya takes place at a small psychiatric clinic for adults. All the staff at the clinic have known her for a long time - both the head of Freya's ward and her therapist/English teacher have been involved in her care for a considerable time and none of the regular nursing assistants has worked with her for less than three and a half years, and most of them between five and twenty years.

When I first came to the clinic and I was busy getting to know Freya, I noticed a kind of hopelessness and despondency, bordering on collective depression, among the staff. They felt they had tried everything…

To me, adult psychiatry was a new environment where the rules were different from those in habilitation and education. The most unfamiliar and shocking aspect was the tying down with belts and other coercive measures. I had believed that the days when these types of measures were used were long gone.

I also came to understand that I was someone who had been forced upon the clinic by the Board and that my main advantage was that I did not cost anything as far as the clinic was concerned- special education for adults is paid for by the Board. My work was lonely and hard…while, at the same time, I very much enjoyed meeting and working with Freya. At a distance, there was an assistant principal who supported me in my work, a psychologist from the Board and a supervisor in another city whom I met only once a month. In the beginning I often felt like I was working in a vacuum.

In the fall of 1995, in connection with writing a paper about my work with Freya in the graduate course at the Faculty of Education at Stockholm University, I put together a questionnaire for the staff at the clinic in order to find out their views on Freya, her treatment and my work.

This is how the head of Freya's ward describes the work done at the clinic:

Our ward is intended for patients who are particularly difficult to treat and who are prone to violence. We are working with a combination of individual psychotherapy, psychodynamically guided environment therapy and psychotropic drugs. We believe that all our patients, regardless of the cause of their psychiatric disorder, have been subjected to environmental influences which have affected their development and which we can work through."

Freya's treatment consists of a combination of psychoeducational methods and psychotherapy in order to “untie knots from the past".

Her diagnosis has been redefined and the clinic now sees her as a person with “infantile autism with added environmental layers and a severe obsessional neurosis". The goal of the treatment is to make her function better and there is hope that she will improve considerably, although she is not expected to be able to live on her own out in the community. In addition to the work done on the basis of the autism diagnosis, the head of the clinic considers it essential to continue working through her early childhood memories and to continue prescribing medication.

The psychotherapist, who has worked with Freya for nine years, sees her twice a week for 45 minutes. Her therapy is based on psychoanalytic/psychodynamic theories and the English lessons are described as “a transitional space - as defined by Winnicot - where the child's toys have been replaced by the teaching of English". The focus of the therapy is both on the English skills Freya wants to acquire and on the student - teacher/therapist relationship. Her short term goal is to give Freya a more meaningful and varied daily existence and in the long term to work through her feelings, make her more trusting of others and able to express herself in other ways than by tearing things apart.

With respect to Freya's autism diagnosis, the therapist believes that there is “an underlying psychosis where the symptoms have an autistic function - frightening off others and protecting her from contact. While the symptoms seem to have only an autistic function, they also have a narrative, symbolic function, which is usually the case with psychotics."

Apart from the nursing assistants, the head of the ward and the psychotherapist/English teacher are the most important people at the clinic to see Freya on a regular basis.

There is also a ward physician, but she believes that there are enough people around Freya already and does not want to interfere. The physiotherapist who was working with Freya during my first year did not get her appointment extended and left.

These two individuals, who share the main responsibility for Freya's care, have clashing definitions of her autism diagnosis. The therapist views it from a psychosis perspective, similar to Bleuler's with regard to his schizophrenic patients at the time when the term was coined. The head of the ward, on the other hand, looks at Freya's diagnosis from the perspective of the neurological disorder called infantile autism.

How do the nursing assistants view it? After all, they spend a lot more time with her every day than the rest of us do. In their eyes, who is Freya and what are her needs?

According to the answers given in the questionnaire, almost all the nursing assistants agree with the statements which are criteria for the autism diagnosis, that is, the statements concerning a diminished ability to make contact and communicate and a limited range of behaviors which are governed by rituals and non-functional routines. On the other hand, they do not agree that, or do not know whether, she has an autistic disorder.

This inability to assess the diagnosis of autism is not surprising considering that none of the nursing assistants have been given any information about autism by the clinic management. On their own initiative, some of them have read books, newspaper articles and have watched TV programs about autism, and some think that I have contributed to increasing their knowledge in this respect.

Regarding Freya's daily activities, the vast majority think that she does not have enough to occupy her. There are few unplanned activities - the ones mentioned are kicking the ball around, talking, walking in the park, reading, or, during the summer, swimming in the pool. In this connection, one of the nursing assistants has a completely different view of Freya and her ability to make contact and communicate, as well as her ability to initiate various activities. This person thinks that Freya initiates many activities herself and that there is almost no time left for the staff to do so.

There is a clear dividing line between the nursing assistants in some respects. Those who have had longer continuous professional training find it easier to formulate goals for their work, easier to see that Freya needs more to occupy her, and easier to initiate activities with her. In addition, they are not as inclined to agree with statements about it being difficult to communicate with her. Also, these nursing assistants have been gathering information about autism on their own. The nursing assistants' views of the person they are caring for are very divergent. The number of years they have spent in the care services or qualifications such as “experience of life" do not enhance their ability to understand Freya or perceive her needs. The most effective factor in this respect is the “education" factor. Most likely there is also a personality factor. Possibly, curiosity about and an interest in people have made some of the nursing assistants keen to become more knowledgeable and to attend courses to allow them to develop as professionals.

The issue over which the opinions of the nursing assistants diverge the most is with respect to the goals of their work. In this regard, each assistant seems to have his own opinion. Some believe that there is no objective at all, except perhaps keeping the weight of the patient at the level she herself wants. To the extent they think there is a goal they describe it as a wish to enable Freya to live in a different type of housing where she will be less isolated and, consequently, will have a better quality of life. Another objective is for her to require less care. Those who believe that an objective exists think that it is being defined by the entire staff and the clinic management.

I, myself, have noted that opinions differ and that the work is done differently depending on who is on duty. However, I was surprised at the extent to which they diverge. When reading the answers in the questionnaire, one gets the impression that the nursing assistants are working in completely different wards and with completely different patients.

I do not see any reason for me to form an opinion of how and why these divergent opinions can exist side by side, year after year: I merely note that this is the case.

As for the question of how my work with Freya is valued, the answers to the questionnaire show that the individuals with the highest level of education value my work the most. Many think that their view of Freya has changed completely and that they have learned something new both from my way of working and about autism. Those who stress their experience of life or their on-the-job-training see less progress in Freya. Those who cannot see a clear objective in their own work perceive to a greater degree the value of the work I do as being “something to occupy Freya for a while" or that “it is free - it doesn't cost the clinic anything".

Despite the fact that the ward is a small unit and has a high level of staff permanence, it is not easy to establish a consensus regarding goals or a common view of Freya. Each staff member works in her own way on the basis of her experience, her empathy or lack thereof, and her knowledge.

It is well known from studies of institutions that every work unit creates its own rules which are independent of stated policy. Because they are working in secrecy and are never brought out into the light to be examined, the silent rules and agreements have great influence and longevity. They can also be imposed on the patient in the form of “splitting" or projection. A real clash of opinion regarding the definition of goals and working method and how to view the patient can be hidden behind psychological terminology and can give free scope to the silent forces.

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The Disability Care and Habilitation Services Board

The psychiatric care services have a long history which strongly influences the present. It has its origins in a hierarchical hospital care structure and still uses terms such as “sick" and “healthy" when assessing the individuals who are admitted as patients.

The habilitation service of the Disability Care and Habilitation Services Board is an organization which has been built up during recent decades and which is founded on the belief that people should not be labeled as “sick" or “healthy". Institutions were torn down, children were integrated into regular day care groups and into special classes in elementary schools. Normalization and integration became the watchwords. The individual is seen as a combination of biology and psychology. The biological make-up of an individual is the basis of her psychology. A person who is born with a neurological impairment necessarily has a different psyche than someone who does not have this impairment. A cognitive disability cannot be willed away through psychology.

Our physical environment influences our possibilities for developing sensory experiences, talent, knowledge, attitudes, feelings, etc. Having lived in a limited environment the way Freya has for such a large part of her life must, of course, have restricted her opportunities for development. Concepts, thoughts, feelings can only be learned through contact with other people. This model of interaction, where all parts of an individual and her environment interact with each other, has given rise to a model for habilitation which attempts to take into consideration all these aspects of the individuals who are part of the “circle of individuals". These individuals are people with developmental disabilities, people with childhood psychosis which appeared before the age of 16 or with autism, and people who after the age of 16 have suffered severe brain damage as a result of an accident.

Her diagnosis, “infantile autism", means that Freya belongs to the “circle of individuals" of the adult habilitation services. Her biological self and to some degree her psychological self determine her place in the services of the Disability Care and Habilitation Services Board. But according to the Act on the Provision of Closed Psychiatric Care, the danger she supposedly presents determines that she should be kept in closed psychiatric care. Consequently, to a large extent, this law also determines what her physical environment will be like. The aspects mentioned in the goals set up for Freya at the clinic are medical, psychological and environmental aspects. By the use of medication, psychotherapy and environmental therapy, her quality of life will improve and she may be able to move to a different type of housing.

In the adult habilitation services of the Disability Care and Habilitation Services Board, group housing and work places have been set up for the individuals who fall within the scope of the Act Concerning Provisions and Services for the Intellectually Handicapped. Being purposefully occupied is considered as important as having living arrangements which are as normal as possible and which preserve the integrity of the individual. Adults who have not completed school or who as adults would like further education have the right to attend school pursuant to the laws concerning adult education. However, the law provides for education only if space is available.

As a teacher in the Special School System for Adults, my time in Freya's life consists of six lessons a week during the 1995/96 school year, some correspondence and a visit on her birthday.

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The Special School System for Adults

Up to 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".

“The Special Schools for Adults, which are directed at adults with developmental disabilities, shall - with the previous level of education and the experience of each student as the starting-point - deepen and develop the student's 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:

One does not have to read any further for it to be obvious that people with autism were not foremost in the minds of those who drafted this curriculum. As early as 1986, people with autism and acquired brain damage became part of the “circle of individuals" encompassed by the Act Concerning Provisions and Services for the Intellectually Handicapped and since then they have been students in the special schools both in the compulsory special school system and in adult education. After a nationwide transfer of responsibility for the special schools to the municipalities, the needs of these groups are no longer taken into account in the curriculum.

Research in the field of autism shows that people with autism need an educational method tailored to their special cognitive structure. They are not as aware of themselves as individuals as others are and cannot communicate on the same terms as others do. Nor is it easy for them to perceive their own educational needs or influence their choice of subjects in the way other adult students do.

Consequently, the student “taking personal responsibility for her studies and her working environment" and “actively influencing her education" are not realistic goals for this group of students.

Many students with autistic disorders do not easily fit into the levels and courses included in the curriculum. The students have the choice of three levels: the levels of the school for severely intellectually disabled children, the compulsory special school and the special secondary school. Sometimes, for students with autism or Asperger's syndrome the whole spectrum is needed: from the “communication" of the first type of school, to the courses of the compulsory special school all the way to the individual program in the regular secondary schools. Freya is a typical example of this kind of student who bridges the various levels. While she needs training in basic communication and understanding of the mechanisms and laws behind the trivialities of everyday life, she reads advanced specialist literature on neurophysiology and psychology. However, a special approach based on educational methodology used in the special schools is required for her to be able to read this literature. In many European countries there are special curricula for students with autism. In Britain, there is “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 for how to adapt one's teaching to 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.

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Appendix

Freya's First Computer

Hardware
Intel Pentium 150 MHz
32 Mb RAM
1,2 GB hard disk
MAG 17" SVGA monitor
ATI Graphics card
NEC CD exchanger for four CDs, Quad Speed
HP laserjet 5L
Keyboard, Storm 1100 (IP 65)
Glidepoint
The keyboard and glidepoint are placed on a special recessed shelf

Software
Windows 95
Microsoft Office
Multimedia programs about the body, e.g.:
“The Ultimate Human Body" The Inside Story" “Young Genius - My Body"
Dictionaries:
Wordfinder, English-Swedish and Swedish-English
Songs recorded by herself with the lyrics displayed on the screen

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