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Loss and bereavement in autism

Updated on September 21, 2010

Introduction

Children with autism have the right and capacity to grieve. As they spend the majority of their time at school, teachers and staff members will be their primary source of care and support and therefore should be trained to enable them to complete the tasks of grieving in their own way and in their own time.

It is almost inevitable that a centre will, at some point, have to deal with a death that affects its community. Most commonly this will mean an individual pupil experiencing the death of a close family member, but it may also be a death of a child at the centre, or of a staff member.

Bereavement and autism

People react individually to grief, but most people share certain reactions.

Because people with autism have difficulties with social interaction, it might be concluded that they do not form attachments to other people, and are therefore insulated from the grieving process. In fact, they can be deeply affected by the death of someone close. Research shows that:

- all people with autism react differently to bereavement

- they may share the “common reactions to bereavement” and may be affected by the major determinants or reactions to grief

- they may undergo reactions similar to those of bereaved children and young people

- the grieving processes of people with autism are profoundly affected by their disabilities

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The process of grieving

Many experts view grief as a process with identifiable stages:

1- Shock, denial

2- Despair, including anger, guilt, anxiety, depression, panic, appetite disturbance, sleeplessness, hyperactivity, nightmares, regression, loss of skills...

3- Recovery and acceptance

People do not experience an orderly progression from one stage to the other. These stages overlap and merge with each other (A T Carr, 1988).

Determinants of responses to grief

The major determinants of the intensity and duration of responses to grief, common to all people suffering from bereavement are:

- Closeness of the relationship

- Nature of the attachment

- Mode of death

- Historical antecedents

- Personality of the bereaved

- Ethnic and religious background (Worden, 1988)

The child’s position on the autistic continuum can affect their grieving process. Children at the end of the continuum might require detailed explanations and opportunities to explore their own concepts of death and after-life beliefs. The majority of them would probably need simple, factual explanations. Adults must be prepared to respond with flexibility, depending on the capacities of the individual.

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Need for preparation

As part of the children's right to be taught how to manage their own feelings, they should be given opportunities to prepare for loss and death. Their emotional immaturity, their high level of anxiety and their difficulties in transferring ideas from one setting to another confirm the need for this preparation to be undertaken with caution

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Training for saying goodbye: endings and new beginnings

Adults need to bear in mind the importance of preparing people with autism for the losses which occur in everyday life so that having handled these “little deaths”, they become more able to cope with major bereavements.

Another common loss is departure of staff. This can provide opportunities for rituals of farewell such as parties and gifts.

Life Journals

Life Journals include pictures of events in the students’ lives and photographs of family members and staff at different stages of their lives. These books, with assistance from staff, help students to understand the flow of life and of ageing. They may also help, in due course, with the grieving process

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Explanation of death

It is likely that people with autism will have difficulty in understanding the three aspects of death - that is inevitable, irreversible and universal (Hollins and Sireling, 1991). However, children who have prepared with a good biological explanation, may be more able to accept and understand the concept (Shaeffer and Lyons, 1988).

To learn more about helping children cope with death

Anticipated death

If death is anticipated, the grieving process tends to be less difficult for the bereaved than in the case of sudden death (Worden, 1988). However, anticipated death can lead to pre-death bereavement and it can also be a source of acute anxiety (Worden, 1988). Adults will need to consider, in the light of their knowledge of the student, whether or not they should be informed of the impending death and discuss the matter with the family before making a decision.

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Management of bereavement

The decision on who should inform a child of the death should be thought through carefully. If the death is that of a family or someone close to the family, the decision of whether the child should be informed by a member of staff or a family member should be reached in consultation with the family.

If it is agreed that a staff member will be the informant, The following guidelines should be followed:

- Inform the pupils in the smallest group practicable. Use a flip chart to illustrate what has happened and how the event is affecting us. The amount of graphic support given and the simplicity of the information given will depend on students’ developmental stage and on their communication and understanding levels.

- Use conversational scripts and mantras to provide consistent information to students. For example:

- “I have sad news”

- “It is ok to feel upset”

- Children with autism will need time to process information and to verbalise their feelings and fears. Allow time for individual discussions.

- Be honest about your own feelings and experiences

- Answer pupil’s questions factually. Avoid using euphemisms like “passed away” or “lost”, etc. Use clear, simple and unambiguous words (dead, died and death) to avoid confusion

- Be prepared for pupils to say or do the unexpected

- Observe how they appear to be feeling

- Show affection and support

Use of language

Deaths have been categorised under four headings: natural, accidental, suicidal and homicidal. The type of death can have an effect on the grieving process (Worden, 1988). The first two types of death are more easily explained to a person with autism. Information available at present indicates that people with autism sometimes ask “where” or “when” a person died, but they seldom ask “how”, although staff should be prepared for them to do so. Those who ask “how” may be better able to assimilate the answer.

The cause of natural death can be explained by saying that the deceased “was very old so that his/her body stopped working” (Shaeffer and Lyons, 1988) or that “they were fatally ill and the doctor could not make them better”.

An accidental death can be explained by saying that “his/her body was so badly hurt that the doctor could not make it better so it stopped working” (Schaeffer and Lyons, 1988).

When death has been caused by suicide, the most able students with autism are more likely than the majority to ask how the death occurred. Informing them of the suicide can lead them to severe depression and sometimes suicide. It is therefore highly recommended that if a person with high functioning autism needs to be told that their family member has committed suicide, specialised counselling help should be sought.

With other students, explanations such as “they took too many pills which made them fatally ill and the doctors could not make them better” or “a train ran over them and their body was so hurt and broken that it can’t work any more” can be useful.

Much of the same advice applying to suicide applies to homicide. Specialist counselling help should be sought if at all possible.

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Rituals

Children with autism should be offered the opportunity to participate in bereavement rituals. Unless they have expressed a clear wish not to participate in these rituals, staff should be prepared to enable them to view the body of the deceased, attend the funeral and attend the burial or cremation..

Staff must write social stories to explain to students what they should expect. It might therefore be helpful for staff to gain as much information as possible about the religious rituals.

Information to be included in the social stories include details about the actions of the mourners at the funeral (singing hymns, saying prayers...) and the meanings of the rituals (as much as they can be understood by the student). Students should be reminded that it is ok to cry at a funeral.

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Comforting the bereaved child

The role of adults is to facilitate the grieving process by such measures as:

- being there when needed

- anticipating reactions

- listening and reading cues

- intervening when help is needed

- supplying words to help children describe how they feel

- reassuring and comforting

- explaining the grieving process at an appropriate level

- if the child accepts it, offering comfort by using positive touch, holding or massage

- ensuring that the bereaved as a calming place in which to grieve if they indicate they need it

Common reactions to beveavement

- Anger

This might be directed at the one who died, at the person who broke the news of the death, or it might be a generalised anger. Adults should enable children to express their anger without harming themselves or others, or damaging property.

- Guilt

Guilt is anger turned on oneself, but in people with autism it is often expressed as overt anger. Adults should reassure children that the death was inevitable and not caused by their own or any other individual’s actions.

- Anxiety, fear, panic

These are all common responses to bereavement. These feelings are likely to be heightened in people with autism because of the changes that almost inevitably follow bereavement, which are likely to be very threatening to a person with autism.

It is important to convince the child that they will continue to be cared for and to provide the security afforded by maintaining the usual routines of daily life.

- Depression, despair

People with autism have difficulty in understanding and expressing their feelings. Adults need to help them to do so, at a level which is appropriate for them.

Adults should be vigilant to detect and to deter, if possible, thoughts of suicide, particularly on the part of the more able people with autism.

- Nightmares

Adults should be aware of the risk of sleeplessness and also of the fact that the bereaved may have very frightening nightmares.

- Regression, loss of skills

Emotional and physical regression, increased dependency and loss of skills are common reactions to bereavement. It is strongly advised that any form of assessment of a person with autism be avoided during a period of bereavement, as it would result in an entirely “false reading”

Common problems encountered in bereavement

The grieving process of people with autism is impeded by their difficulties with communication, social interaction and cognition. Some of the problems that might arise are:

1.Failure to grieve after loss

Some people with autism do not grieve after loss (Brelstaff, 1984). These few examples do not justify an assumption that they do not have a capacity to feel emotion or that if an individual does not exhibit grief in an expected way, that they are not grieving.

2. Delayed reaction to loss

Grief is often a delayed process for people with autism. They initially fail to understand the implications of their loss, but m any come to feel the impact later (Kitching, 1987).

3. Apparent failure to understand the irreversibility of death

It is normal in the early stages of bereavement to behave as though the deceased still lives or is present, and to experience difficulty in accepting the finality of death. It might be that the student’s repeated questions about the return of the deceased after the funeral and burial or cremation are their way of coming to terms with their loss. They may feel a need to check the consistency of the replies they are given or their questions may be their way of showing that they need comfort and reassurance.

4. Uncertain and inappropriate responses to bereavement

Some people with autism express uncertainty regarding how they should react to death. Others have reacted by giggling at the funeral or at the gravesite or by appearing callous and unfeeling, perhaps a reflection of this uncertainty. Some callous comments can be the result of difficulties with verbal expression.

5. Disruptive or aggressive behaviour

Because of communication difficulties, the only ways some bereaved students with autism may be able to express their grief is by disruptive or aggressive behaviour. It is important to remember that even long after the loss has occurred the students’ behaviour can be affected by bereavement.

6. Inability to request help

Because of their difficulties with social interaction and communication, people with autism are unlikely to seek support when they are anxious, depressed or unhappy. It is therefore necessary that adults intervene sensitively.

7. Inability to seek activities which may help in the grieving process

People with autism may not have the insight, motivation or experience to seek activities which might be helpful to them, and they will need help from adults to have access to them. Visual reminders should be included in their organisers.

Pocket book about loss and bereavement

I have created an electronic pocket book about loss and bereavement that I have used with some of my students when necessary. If you would like to purchase an electronic copy, please, visit my on-line store on http://helpingcommunicate.co.uk/The_girl/store/ or contact me for further details

Please add your questions or comments

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    • brightandshiney profile image

      brightandshiney 5 years ago

      your article is excellent. We had several deaths in my family right in a row and my daughter who has PDD couldn't understand what was going on and why she could never ever see that person again and often made inappropriate statements at the worst times. The info you provided was great! Thanks

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      anonymous 5 years ago

      I would also like to know if you've dealt with any regressive toileting issues. My husband died 3 Weeks ago from brain cancer and 3 months ago our 8yrold on the spectrum decided he was not going to use the bathroom for bowel movements. I appreciate the recommended reading and I am going to look it up.

      Thank you.

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      anonymous 5 years ago

      I would be very interested in talking with you further about this. Your article was excellent and one of the most useful, informative articles I have been able to find with regard to assisting the child with autism through a bereavement process. I would love to talk with you further about some particular issues. If that would be possible, please advise at dsewell@acadian.com Gthank you.

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      anonymous 5 years ago

      Thank you so much for writing and posting this.....My father passed away a year and a half ago and my autistic son is just now dealing with intense grief along with guilt. This has helped me with how I might reassure him. Thanks again.

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      mmom9495 5 years ago

      Lots of good info. In November my 3 teenage boys were in an accident caused by another teen. We lost our 14 year old in the accident, and my 16, and 17 year olds were injured. My 16 year old is Autistic spectrum (Aspergers characteristics). His injuries were so great that he was unable to attend the funeral. We were advised to record it so he could "participate" in the process. He is well enough now and struggling with how to grieve. (stuck on anger toward the other boy). He does not want to watch the video, but I wondered if it would help him to begin moving on and dealing with the loss. At a loss on how to help him deal when he will not even face that it happened. Any advice would be great thanks.

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      anonymous 6 years ago

      good work!

    • vitar profile image

      vitar 7 years ago

      Really enjoyed reading this lens, good work!

      Please visit my lens Eulogy.

      Thanks!

    • profile image

      anonymous 7 years ago

      This article was very helpful. I am a 20 year old male with Asperger's Syndrome and am worried that our family dog will pass away any day now. He is very old. He is fully blind, his hearing seems to be failing him recently, he sleeps a lot, he walks very slowly, and he has body pains. So I am trying my best to prepare for that day. So when it does come, I hope that it will not hurt as much. On another topic, I am battling the Social Security Administration because they believe that I am no longer disabled because I am a little bit more "Higher Functioning" then most others with Autism. So any advice on how to win my case would be great.

    • WaterMom profile image

      WaterMom 7 years ago

      Not having had any contact with a child with autism, this is not something I've had to think about. You put it very clearly and simply. Thank you.

    • Stazjia profile image

      Carol Fisher 7 years ago from Warminster, Wiltshire, UK

      This is a very interesting and informative page on the special problems of helping a child with learning difficulties through bereavement. I know that any child can be affected in the long term by a bereavement, it must be especially difficult for a child who doesn't really understand the meaning of death.