Bereavement - a guide for parents and carers

Bereavement is something we will all go through but there is limited understanding about how and if this might affect autistic people differently. You might see significant changes in your child’s behaviour and they may behave differently to how you would expect.

How might a bereavement affect my child?

When someone or something important to them dies, autistic people may show typical grief responses, such as:

anger
increased restlessness
changes to their sleeping and eating patterns
an increased dependence on others
a loss of previously displayed skills and confidence.

They may also show other feelings or responses, such as:

a failure to grieve or delayed grief
aggressive and destructive behaviours
excitement.

Autistic people may find it difficult to express their own feelings around bereavement.

Your child may struggle to understand the concept of death and loss and how they are supposed to behave when someone dies.

Most personal accounts suggest that autistic people react to death and experience the grieving process differently to non-autistic people.

Autistic people have said that they may:

have difficulty being able to connect with their emotions 
may not cry or show emotions
show a delayed or extreme emotional response
experience an increase in autistic characteristics such as sensory sensitivities, meltdowns and shutdowns
find it harder to organise, plan and concentrate on tasks. These skills are also known as executive functioning
find it more difficult to understand and manage their own feelings, also known as emotional regulation
have difficulty understanding what to do in social situations such as hospital visits and funerals.

How can I help my child through a bereavement?

Your child’s grief will need to be recognised and understood. They will need time and space to express their feelings in a way that works for them.

There is a limited amount of research, information or guidance on how to help autistic children deal with death and bereavement, but it might be helpful to think about:

including your child in rituals around bereavement and explaining them, for example vigils and wakes
supporting your child to understand, express, and cope with their grief
talking therapies – your child may find these helpful in dealing with their grief or other emotions, but make sure they are adapted or suitable for autistic people.

Talk to your child and prepare them

You’re likely to be going through a difficult time yourself but if you can put in place some of these supportive techniques, you can make the situation easier for your child.

Talk about the situation rather than avoiding it.
Prepare your child should someone they know be terminally ill.
Use simple, direct and unambiguous language, avoiding euphemisms that might be taken literally, ie don’t tell your child that someone has gone to a better place, or gone to sleep rather than telling them they have died.
Tailor the information to the needs of your child and their level of understanding.
Recognise that everyone expresses grief differently - your child will need support to express their grief in a way that is right for them.
Explain to your child that they may see family members crying or acting unusually.
Provide as much information as possible about what to expect when attending hospitals, funerals and wakes, including visiting places in advance if this is possible or looking at pictures.

Autistic people have said that they felt they needed more support with the grieving process.

There are many types of counselling and therapy including cognitive behavioural therapy (CBT) which has been shown to be effective for some autistic people. All talking therapies should be adapted to be effective for autistic people. If you would like to access therapy for your child, you can do this through your GP or privately.