Elling – a review for healthcare staff

(See also what the International Movie Database says about Elling.)

Please note: This article may spoil your spontaneous enjoyment of the film. A number of significant events are revealed, so if you want to watch the film without preconceptions, we advise you to read the article after watching the film.

Norwegian Peter Naess has directed this film from 2001 about two unusual friends, Elling and Kjell Bjarne, who meet in a home where Elling is taken after his mother dies. Until her death, his mother dealt with all the practical aspects in Elling’s life. He had virtually never left his home. His life was turned upside down when his mother died and he was forced to face the outside world.

In the beginning, everything is anxiety-ridden and overwhelming. In the home to which Elling is taken he has to share a room with the stranger Kjell Bjarne. What is more, people go to group meetings where they are encouraged to "open up" – something that is completely strange and incomprehensible to Elling.

Little by little, Elling and Kjell Bjarne move into their own flat in central Oslo, where they have to fend for themselves.

At the beginning of the film, we immediately get a simple description of how AS can appear: a grown man, living at home whose existence is managed by his parents, and who thereby avoids encountering the outside world. He is happiest at home and would rather be left in peace on his own terms.

He has no friends. His motor activity is stiff and unusual and his clothing is practical, taking no account of fashion in the world about him. Elling finds it unbelievably difficult to handle change and makes every effort to avoid meeting strangers. He is eccentric and often arouses frustration in those who attempt to help him.

The scene at the railway station ticket window when Elling tries to buy his ticket provides a good picture of the literal interpretation that AS patients often make. Similarly, when Elling is going to a poetry circle and his contact Frank tries to explain why the meeting has not yet begun at eight despite that being what the advert says, we can get an idea of AS patients’ difficulty in understanding the unwritten rules by which we are surrounded.

The meal at the local pub is a good example of how difficult it can be for AS patients to change their attitudes when they are firmly set on something, in this case pork and potatoes. AS patients may often have both compulsive and sociophobic tendencies, as can also be glimpsed in the film. We notice that AS is an autism spectrum diagnosis when Elling has a temper tantrum and hits himself and when his friend Kjell Bjarne falls in love and their world begins to change.

In the film Elling gradually improves, becomes able to cope with more and more and his world expands. But it is clear that he does well only so long as change is on his terms and goes at his pace. When it is Kjell Bjarne who changes, Elling get much worse and reacts by becoming either anxious or apathetic.

Special interest a typical aspect

Another typical aspect of AS that appears in the film, but is not so prominent, is Elling’s special interest. Most AS patients have a special interest. This often involves trains, dinosaurs, timetables, rote knowledge or grubbing around in reference books. Music too is a common interest.

In Elling’s case it is ideology and the Labour Party. We get a small insight of how important this is for him and how involved in/obsessed by the subject he is. In reality, the special interest tends to occupy an unbelievably important position for the AS patient.

And since the inception of the Internet, there is often no limit to how much time he can devote to his interest. What we can see about Elling is that he takes his interest unbelievably seriously and cannot joke about it. Humour can also be complicated for AS patients since their literal interpretation of the world about them makes it difficult for them to understand jokes.

This is something we see an example of when Elling, Kjell Bjarne and Frank go to the pictures and Elling says he cannot understand what is funny.

Too much empathy

Obviously the film was made for entertainment purposes and therefore does not completely accord with what a plausible "real" Elling would be like. The things that do not correlate particularly well with reality are that the Elling in the film has slightly too much empathy and is rather too good at understanding other people’s positions and feelings.

We see this, for example, in the Christmas present to Kjell Bjarne. Conversely, we may say that Elling’s reaction when Kjell Bjarne finds the woman on the stairs is more true to life.

An interest in poetry is rather uncommon among AS patients since they often tend not to be able to think in abstractions. They also seldom tend to talk in images, as Elling does during lunch in the cottage.

Elling’s development, too, happens at a pace that is more in accord with the time limits of the film than with reality. Although the improvement is believable per se, it is probable that it would have taken considerably longer in reality.

However, the film broadly speaking provides a realistic picture of a man with AS. As ever when working with people, it is important to remember that everyone is unique, including every person with AS. This is an image and, what is more, quite an entertaining one! It is a good introduction to Asperger’s syndrome.

ASPERGER'S SYNDROME

Background

As recently as the 1980s Asperger’s syndrome was largely unknown as a diagnosis in Sweden. Not until of the end of the 1990s did knowledge of it penetrate adult psychiatry – this despite the fact that Hans Asperger, who was a paediatrician in Vienna, had identified the syndrome as far back as the early 40s.

He described a group of boys with a lack of empathy, inability to create friendships, one-sided conversation, intense involvement in certain special interests and clumsy motor activity. He regarded this as a personality disturbance and gave it the name autistic psychopathy.

However, because of the war, Asperger’s work disappeared into oblivion until the 1980s when Lorna Wing published an article in which she described a group of children and adults who exhibited the same symptoms and behaviour as Asperger described. She was the first to use the term "Asperger’s syndrome".

The year before Asperger published his article on "autistic psychopathy", Leo Kanner in USA published an article about a group of children with autism. The children he described had a more pronounced condition but they too had limited ability to interact socially, difficulties in communication and limited, repetitive interests.

Autism Spectrum Disorders

Lorna Wing, who still works as a doctor in London, was thus the that first person to use term "Asperger’s syndrome". She also developed the concept of Autism Spectrum Disorders, which means that the term autism comprises a spectrum of disorders of highly varied severity.

Kanner’s Syndrome, or classic autism, is a more pronounced form of autism with pronounced lack of social skills while Asperger’s syndrome, together with high-functioning autism, are at the other end of the spectrum with a less pronounced social withdrawal. She also gave rise to the term "Wing’s triad", which means difficulties in three areas:

• Lack of social interaction skills
• Lack of communication skills
• Limited, repetitive and stereotypical patterns in behaviour, interests and activities.

Asperger's own diagnostic criteria

Asperger’s syndrome is now regarded as a subset of the autism spectrum and has its own diagnostic criteria. The criteria of DSM-IV and ICD-10 require normal linguistic development but delayed linguistic development is included in Gillberg’s criteria as a criterion of its own. In my view, Gillberg’s criteria match Hans Asperger’s original description better.

Furthermore, the DSM and ICD criteria exclude a large group who are of average intelligence despite delayed linguistic development but nevertheless have the typical symptoms and behaviour that characterise the syndrome. Gillberg also includes motor activity problems as a criterion, which DSM and ICD do not.

Gillberg bases his criteria on six different areas:

1. Major difficulties with mutual social interaction
2. Monomaniac, narrow interests
3. Compulsive need to pursue routines and interests
4. Speech and language problems
5. Problems with non-verbal communication
6. Clumsy motor activity

From the outset, autism spectrum disorders were regarded as psychologically determined and the symptoms and behaviour that a person with autism exhibits may also appear to be so. However, it is now known that the underlying cause is neurological and is determined by the fact that the brain operates in a different way.

Growing up with Asperger’s syndrome

The image of an Asperger’s syndrome patient is often that of an odd person with abnormal motor activity, emotionally cut off and having special interests that are shared with other people in long monologues. This is often correct, but many of the adults we encounter, particularly women but many men too, give a different picture.

They are not as obviously odd, abnormal or socially cut off as we expect. They often have well-developed verbal skills and a large vocabulary. This has often led to their being misunderstood and distrusted because we have looked only at their good side and not taken into account their, often hidden, difficulties. The fact of their failing in their studies or at work is ascribed to lack of will instead of lack of ability.

Asperger’s syndrome often means that victims have difficulty in completing their studies. Many of them do well during their first years at school but tend to have increased problems at the higher levels where they have more teachers and have to keep track of the timetable, what room they should be in and what books they should have with them for every lesson.

Bullying the rule

Bullying is the rule rather than the exception and many of them have no friends at all. The girls often tend to hang out with circles of friends up to puberty, when their interests change from playing with dolls, riding and the like, to clothes, makeup and boys. These interests often emerge later in girls with Asperger’s syndrome if they come at all.

In one’s teens the ability to learn slang and unspoken social codes come to play a major part in how one blends in and is accepted. Another critical period is after secondary school, a time when many people leave home and take the leap into adult life. They need to find a job to provide for themselves or finish their university or college studies.

Many young people with AS stay at home with their parents; some may possibly try to live independently for a while but many fail. There is often a period of unemployment, studies commenced but not completed, an isolated existence in the parental home that in many cases results in depression, sleep difficulties, apprehensiveness and anxiety.

Many have sought the help of psychiatry, which has only perceived their depression and apprehensiveness rather than the underlying functional impairment, and prescribed treatment with drugs or long, drawn-out therapies that have not led to any improvement.

The functional impairment cannot be cured by therapy or medication and the problem remains. Sufferers cannot manage to live on their own, complete their studies, find jobs, etc.

Being a parent of a young person with Asperger’s syndrome

Many parents have testified that they are met with disbelief by psychiatrists and social services who have interpreted the situation as it being the results of parents’ "over-protectiveness" that the young person has difficulty in breaking away and living an independent life.

Parents of children with Asperger’s syndrome have often long since got it clear in their own minds that their child is different and more vulnerable than others. Such children can easily get into problems because of their naivety and their difficulty in assessing and understanding social situations.

A very large proportion have been bullied and had other problems at school. It is then natural for their parents to try to protect their children and they may in some cases become over-protective. The young person in turn often becomes dependent and has difficulty in letting-go of his parents, who may constitute the only security he has in an incomprehensible and uncertain existence.

He may also have difficulty in getting away from habitual routines because of difficulties in coping with change, the so-called "insistence on sameness". We as healthcare professionals must understand this and support the parents instead of blaming them.

Investigation of young people and adults with suspected AS

In order to be able to give a person with Asperger’s syndrome the correct help, it is necessary to map out the underlying functional impairment. An investigation consists of a number of elements:

1. Mapping out the development of different functions, i.e. an exhaustive history that takes in the various aspects of the individual’s development from pregnancy and birth to the current position. For this we use interviews with the patient himself, and with his parents or teachers. It is also possible to use appraisal scales and questionnaires developed for the purpose.
2. Neuropsychological investigation, the purpose of which is to map out the mode of operation of the brain in various respects. The basis of the investigation is a Wechsler Adult Intelligence Scale (WAIS) intelligence test with certain additional tests depending on what is at issue and the patient’s problem.
3. Somatic investigation. A basal somatic investigation with samples taken and radiological examination is carried out only on suspicion of specific problems. Radiological examinations tell us nothing about AS as a problem and are performed only on suspicion of some form of brain injury, tumour, degenerative disease, etc. Chromosomal or DNA analysis is carried out if an underlying, genetic syndrome is suspected.
4. Where needed, a functional assessment by an occupational therapist, physiotherapy assessment and speech therapy assessment are also carried out.

The diagnosis is in fact based only on what we can observe, i.e. symptoms and behaviour, but, beside the diagnosis, the investigation also provides a picture of the largely invisible underlying functional impairment and hence can become good guide when we then have to design the support that the individual needs.

Treatment/rehabilitation

As I stated previously, many young people with Asperger’s syndrome do badly in their teens. The reason is often the stress caused by increased demands in the situations cited above. Common psychiatric diagnoses include depression, obsessive-compulsive disorder (OCD), panic disorder, social phobias and eating disorders. Serious apprehensiveness and anxiety can lead to disorganised behaviour and psychotic symptoms. Psychotic diseases are more common than in the population at large.

If one is to be able to help these young people and young adults successfully, it is important to have a knowledge of the underlying functional impairment and to be able to adapt the treatment to it. One important fruit of clinical experience is that individuals with Asperger’s syndrome often react unpredictably to medication and are more prone to side effects.

It is therefore necessary to begin with lower doses than normal and titrate the dose up over a longish period. One must also be prepared for the fact that their reactions can be different: a mania that is triggered by anti-depressive treatment may seem like a state of confusion or a psychosis. Depression may often assume a more physical expression in the form of somatisation, hypochondria, etc.

Neither should one mix up the symptoms and behaviour that are determined by the functional impairment per se with symptoms of co-morbid psychiatric conditions. The frequently pronounced dependence on routine and involvement in rituals may easily be mistaken for signs of OCD while the lack of motivation, sparing mimicry and inhibited body language may be misinterpreted as depression and the social withdrawal may lead to ideas of social phobia.

So far as treating the symptoms and behaviour that form part of the functional impairment per se is concerned, we must set medical methods aside and adopt other, more pedagogically oriented ones. Using these, it is possible to help people with Asperger’s syndrome to improve their social skills as well as their ability to communicate and handle stress.

A large part of this help also involves adapting the environment to the functional impairment, helping to create practicable routines, creating predictability, helping to handle unstructured time, etc. The adaptation of the environment may be to create special forms of accommodation, sheltered housing, training places that take account of the functional impairment and work training with skilled supervisors.

It can be difficult to define clearly where the task of psychiatry ends and that of the local authority takes over. What is psychiatric treatment and what is the local authority’s responsibility? Between psychiatry and the local authorities there is also rehabilitation with its task of "promoting the development of the best possible function ability and psychological and physical well-being".

Being an Asperger’s syndrome patient’s doctor

What should you be thinking about?

A person with Asperger’s syndrome is usually verbally able and has a large vocabulary. Behind this there may, however, lurk a lack of understanding of how different things tie together, a difficulty in seeing connections and bringing the world together into a comprehensible whole. Difficulties in understanding people’s behaviour and intentions can contribute to a suspicious attitude to the surrounding world.

This, together with the fact that the person is usually upright and honest, sometimes "over-honest", and demands the same in return, combined with linguistic pedantry can sometimes incorrectly lead to people with Asperger’s syndrome being regarded as supercilious and arrogant.

• Predictability – explain carefully what every element of the consultation is intended to do and why different investigations are being performed. Let the patient be involved in everything that happens.
• Clarity – A person with Asperger’s syndrome has problems with the pragmatic aspects of language, for example switching between talking and listening. One may sometimes be compelled to interrupt a long monologue in a friendly but determined way in order to get any further with the consultation. The patient may have problems with understanding the implied significance of words, words with dual-meanings (context dependent words), idioms, sayings and stock phrases. A straightforward and frank conversation is a precondition of mutual understanding.
• May have defective body awareness. Explain more than usual.
• May have perception problems including sensation, e.g. sensitivity to external contact (do not give the patient a hand without forewarning) but less casual contact will often work better. May have difficulty in eating certain foods because they feel disagreeable in the mouth. Some patients may be particularly sensitive to pain while others are extremely insensitive and may not notice and look for injuries that have occurred of their own accord.
• Self-harming behaviour occurs for various reasons. It is not always "self-destructive" in nature but can be a part of a self-stimulating behaviour pattern, which occurs commonly in autism spectrum disorders. This behaviour is more of a way of dispelling a feeling of emptiness or meaninglessness that can arise as a result of lack of contact with the outside world, so to speak a way of keeping "online" to reality.
• People with Asperger’s syndrome may have difficulty understanding instructions, and remembering verbal ones; they often need longer to process information. It may therefore be a good idea to provide written information. Do use graphical aids when you have to explain different diseases, investigations, etc.
• Involve parents and other key people. They can help you to understand the patient’s position and help the patient to remember what was said during the consultation. They often also know the patient’s particular way of communicating and can thereby facilitate the conversation.
• Also remember that a person with Asperger’s syndrome is considerably more sensitive to stress than normal and that going to the doctor involves not only the stress to which the reason for the visit gives rise but also having to break off one’s usual routines, plan to get there on time, etc.

Points for discussion

• When AS is suspected, what areas of the history should be given special attention?
• How does one differentiate between AS and schizophrenia? What questions may be crucial?
• What should you as a therapist think of when encountering an AS patient?
• What are the main differential diagnoses?
• AS can take a tremendous variety of forms – describe a patient you have encountered whom you now believe may have had AS.
• How can primary care deal with AS patients better? Where can you get help to achieve the best possible result for the patient?
• Discuss how you think your unit currently treats AS patients.
• Discuss whether there are well-known people or well-known fictional characters who may have high-functioning AS.
• Role play a conversation with an AS patient.