Autism & Asperger Syndrome: Managing Change and Loss

Providing support can be difficult for carers because of:

Problems interpreting nonverbal communication.
This will include recognising the meaning of facial expressions, body language, and tone of voice.  Much of the support we offer is expressed by these means and it is extremely difficult for us to do it by words alone.

Limited ability of abstract thought.
This includes limited ability to appreciate abstract ideas. For most people abstract thought process develop in adolescence.  Before puberty a child tends to think in concrete terms, only able to fully understand things they have seen or experienced.  Children may be seen to deal with abstract ideas in their fantasy play, acting out complex ideas in ways that make them seem real to them.

Underdeveloped Theory of Mind.  This is the ability to imagine what others might be thinking, which most of us take for granted. Without the ability to imagine yourself in the position of another – to empathise – it is difficult or even impossible to understand that person’s motives.  Without an understanding of a person’s motives it is very hard to understand their behaviour.  Therefore, if the client cannot appreciate that you feel sympathy for them; they might not recognise your behaviour as being supportive.

The converse of the last point is that non-autistic people tend to find it difficult to understand what it is like having autism. All to often we look at their reaction to us, assume that they did understand our attempt to support them, and come to the conclusion they they do not want or appreciate the support offered. So we give up trying so they give up trying and fail to recognise that the person did not recognise the offer of help or support.

Effective communication:

Many carers make repeated and fundamental errors in communication with people with autism. Some of the most common are:

• Failure to realise that our use of facial expression, body language and voice tone is not adding meaning to the spoken words or visual signs being used.
• Saying too much. Overuse of words can cause confusion.
• Use of metaphor figure of speech and popular expressions often have little or no meaning for people with autism.
• Waiting until the individual is in crisis before planning a coping strategy.
• Failure to be consistent with means of communication.
• Refusal to accept the reality of the communication disorder and the changes that the carer must make inrespect of their own behaviour.
• Lack of knowledge of the personal vocabulary of the individual with autism.

 Understanding the reaction

People with autism tend to be both inflexible in their thought processes, and have difficulty in generalising their understanding of events they have experienced. Both can combine to create 'situational learning' a process by which people with autism tend to add highly specific elements to their memory of what we taught them, or what they experienced. In practice this can mean that something learnt in a room with blue walls may be hard to recall when the walls are repainted pink. The problem the person with autism has is not a simple dislike for the change from blue to pink. What happens to them is that they can feel very insecure because all their knowledge of how to behave and succeed in that room has the colour blue attached to it, not pink.

Use and limits of role play:

The effectiveness of role play depends on the imaginative ability of the individual. In autism it is vital to separate out our ideas of creative imagination and social imagination (theory of mind). Children with autism often have problems with representational play - a toy car may be played with but is rarely set on its wheels and run along the floor to represent a real one. Where that problem exists it will limit the individual's ability to understand the representational aspects of role play. Impaired social imagination creates difficulty in imagining what another person in the role play may be thinking or feeling - so there will be lots of problems in trying to use role play to increase understanding of the kindness of the dentist, or the caring of the nurse who will take the blood sample tomorrow.

Role play can be used to show people with autism what is going to happen and when it will happen. It can therefore be useful in showing where a change will occur and more importantly, when everything will return to normal again. It can also be useful in showing that an event which is unpleasant will be followed by a reward for accepting the unpleasant event. For instance: dentist appointment followed by a favoured activity followed by return home.

Research into grieving processes in autism:

In addition to all the responses to bereavement and loss that are common in society, such as anger, guilt, anxiety, depression, stress related health problems, loss of skills; people with autism also display the following:

• Apparent failure to grieve.
  This is more to do with our perception of what grieving is, rather than lack of reaction on their part.

• Delayed reaction to loss.
  It is common for people with autism to start displaying the reactions we see as grieving some 3-6 months after the event. Often this is so long after our decision that they are not grieving that we fail to recognise the behaviour when it does commence.
   
• Failure to conceptualize death.
  Without the shift from concrete to abstract thought processes many adults with autism retain reactions to death and loss that are common in childhood. These include failure to realise that death is irreversible and an expectation that the dead person will return at some point in the future.
   
• Failure to understand grieving behaviour.
  Many people with autism are uncertain of how they should feel and react. They lack the social awareness that enables the majority of people to pick up cues from the behaviour of others, and therefore understand how others expect them to behave. People with autism often appear to be unconcerned, or preoccupied with how they feel, rather than displaying concern for others.
   
• Loss of frame of reference.
  The loss of an important figure can lead to insecurity and loss of skills due to the situational learning involving that person.
   
• Limited ability to express feelings appropriately.
  A person with autism might behave in inexplicable ways in order to cope with loss. This might require exceptional tolerance and understanding from carers
   
• Failure to understand the process of grieving.
  No matter how painful the grief at the time, most of us realise that it will come to an end one day. We understand the course of the grieving process. The person with autism, with limited imaginative ability might not appreciate this, and think that their feelings will never end.

The support timetable:

Supporting bereavement in people with autism is not about assessing first reactions only. When you become aware of loss through separation or death, set up a long term assessment process. This should include reference dates that cover periods when the loss is likely to be most apparent to the individual concerned. In the case of loss of a significant person your assessment timetable should run for a minimum of 12 months as this will cover all special days that may be important, such as birthdays, Xmas and the anniversary of the loss. Be ready to respond to any marked change in behaviour as though it were the onset of grieving. Use the time available to plan and script how you will support that grieving when it commences.

What people with autism need from their carers:

Consistency - in attitudes, communication and behaviour. It is obviously helpful if different carers communicate the same ideas using the same words and phrases as each other. Using different words and phrases to describe the same thing will cause confusion and anxiety to someone with literal understanding of words and a difficulty with generalising information.

With acknowledgment to John Mortlock