There is limited research, information or guidance about what bereavement and grief is like for autistic people or about the effects it might have on them. If you are working with an autistic person when they are going through a bereavement, you might see significant changes in their behaviour and, importantly, they may behave differently to how you would expect them to.
 

How might a bereavement affect an autistic person?  

When grieving over the death of someone or something important to them, 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 behaviour  
• excitement.  

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

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

For some autistic people, the death of someone or something close to them may be overwhelming. Their grief will need to be recognised and understood. They will need time and space to express their feelings.  

Be aware that when an autistic person is experiencing grief, their autistic traits may become more apparent.  This is something autistic people highlight in their personal accounts of going through a bereavement.  

Autistic people’s personal accounts of bereavement and the grieving process suggest they may react differently to non-autistic people.  

Autistic people have said that they:  

• may have difficulty being able to connect with their emotions   
• may or may not cry or show emotions  
• might show a delayed or extreme emotional response  
• might experience an increase in their autistic traits, like sensory differences, meltdowns and shutdowns  
• might find it harder to organise, plan and concentrate on tasks. These skills are also known as executive functioning  
• may have difficulty understanding what to do in social situations such as hospital visits and funerals.
   

How can I help?  

There is limited research, information or guidance on the most effective approaches to help autistic people deal with death and bereavement, but there are things you can do to help.  

• Autistic people need to be included in rituals and routines around bereavement.  
• Autistic people should be supported to understand, express, and cope with grief.  
• Talking therapies may be helpful for some autistic people in dealing with grief.  
• Talk to the autistic person about what they are going through and help prepare them for what might happen.  

If you are working with an autistic person who is experiencing bereavement, you can help them in the following ways.  

• Talk about the situation rather than avoiding it.  
• Help to prepare them, should someone they know be terminally ill.  
• Use simple, direct and unambiguous language, avoiding euphemisms that might be taken literally, ie don’t say that someone has gone to a better place, or gone to sleep rather than telling them they have died.  
• Tailor the information to their needs and level of understanding.  
• Recognise that everyone expresses grief differently - autistic people will need support to express their grief in a way that is right for them.  
• Explain that they may see family members acting unusually.  
• Provide as much information as possible about what to expect when attending hospitals, funerals and wakes. Suggest to the autistic person or their family, if appropriate and possible, that an advance visit to the place where the funeral or wake will take place might be helpful. They could visit the venues’ websites and look at pictures of them.   

Autistic people have said that they felt they needed additional 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.
 

Useful links and online resources  

• Autism and bereavement, Purple Ella
• Autistic grief is not like neurotypical grief, Karla Fisher   
• Helping autistic children understand death and dying