Bereavement and loss is an inevitable part of life. Grief and mourning is the natural response to loss of any kind.
Unfortunately very little research seems to be done involving the grief process when complicated by Autism, where it is necessary to consider the significant differences, which may be required in interventions and supporting individuals.
In counselling, grief is often the underlying rather than presenting issue, so especially in cases involving Autism, it may be overlooked in therapy and not recognised or understood by the people close to the bereaved individual.
Often there is support from others up to a funeral but the bereaved may be left alone afterwards. There may be assumptions that the griever wishes to be alone with their grief, but this is often far from the truth. Those who say they think the griever wishes to be alone may be saving themselves the difficulty of having to listen.
There may well be a need to talk but a feeling of being unable to – in Autism overwhelming feelings can cause mutism and withdrawal.
In all bereavements, anniversaries birthdays and holidays are particularly difficult times and should be recognised. People with Autism are often directed by routines and meaningful dates will cause particular anxiety.
All people are individual and grieve and cope in different ways.
Over time many different models of grief have been described by academics.
This one considers the Mediators of Mourning developed by Worden (2009) when assessing an individual’s grief.
1) The relationship to the person who died
2) The Nature of the attachment
3) How the person died
4) Historical antecedents
5) Personality Variables
6) Social and Cultural Variables
7) Concurrent Stresses
The Mediators of Mourning will affect how the griever will accomplish his Tasks of Mourning.
1) To accept the reality of the loss
2) To process the pain of grief
3) To adjust to a world without the deceased
4) To find an enduring connection with the deceased in the midst of embarking on a new life.
Since each person’s grief is individual and unique to them, the tasks of grief will be viewed in a non-linear, non-sequential manner.”
Specific Reference: http://www.academia.edu/1183145/Complicated_Grief_in_Waking_the_Dead_
When complicated by Autism, it may also depend on the level of individual functioning.
Each person also is different – Remember if you have met 1 person with autism you have only met 1 person with autism.
In Autism there can be difficulties with Theory of Mind. Theory of Mind is the ability to attribute psychological states – beliefs, intentions, desires, knowledge etc. to self, and the understanding that those of others are different to our own.
People with Autism may have difficulty expressing empathy. Bear in mind this is not the same thing as not experiencing empathy – but there may be difficulty in appropriate expression of condolences. They may have problems comprehending that others will be grieving differently to them.
Responses may be as they think society expects– for example, how they have seen grief expressed in the media or films.
They may also be unable to cope with the depth of feeling – grief or empathy with others, and so express feelings inappropriately – possibly laughing as a release of feeling, which is not understood by others.
The feelings and grief of others may be too painful to cope with and so withdrawal is evident instead.
Some empathise better with music and so may be fine until music is played and then be inconsolable – the feelings of grief therefore expressed at unexpected times by others.
They may temporarily display a sense of a second personality to cope with, and make sense of, the multitude of feelings, or a ‘friend’ who does not exist to support them.
They may unintentionally come across as too direct or alternatively unconcerned.
Concrete literal thinking may lead to beliefs surrounding the permanence of death – especially when the expression by others is not concrete – e.g. Passed on, gone to sleep, on the other side, a better place. If the dead person we were so close to is in a better place – then why would it be better than with us?
There is nothing concrete to see so this may affect the grieving task of accepting the reality of the loss.
There may be difficulty in emotionally relocating the deceased. People with Autism are often visual learners and thinkers and may respond best to pictures and other more tangible means of incorporating memories.
There are special interests in Autism – the death may become their new interest as a means of making sense of it. They may seem to have a morbid obsession.
Difficulties in Executive Functioning also feature in Autism. This is an overarching term for the cognitive processes that regulate, control and manage other cognitive processes such as working memory, attention, problem solving, verbal reasoning, inhibition, mental flexibility and task switching, and the initiation and monitoring of actions.
Following bereavement new routines will need to be established.
Whether or not the person with autism is verbal will impact on their grieving process. Expression may be necessary through other means, but understanding is certainly necessary. Online support groups may be beneficial.
People with autism may not have friends who are within their chronological age or be able to relate to those of their own age group. This may be an issue online with support if, for example, the support group is specifically for young people.
It may also be an issue with contact with others they felt were close to them if the common denominator was the person who died. There may be not further contact after the death/ funeral, and this can be confusing and add to further sense of bereavement – secondary loss, of others who were previously familiar to them.
Social stories may be effective interventions to enable the person with Autism to both express their thoughts and feelings and to become familiar with what is happening – normalising the feelings and situation, and offering alternate ways of coping pre and post bereavement.
Worden, J.W. (2009). Grief counselling and grief therapy: a handbook for the mental health practitioner. (Fourth edition). New York, NY: Springer Publishing.