This week marks World Autism Awareness Week and we would like to take this opportunity to highlight that Hospice at Home West Cumbria provide end of life care and bereavement support to people with Autism and their families.

 The National Autistic Society explains that 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. However, they do say that when going through bereavement there may be some significant changes in behaviour and people may behave differently to how you would expect them to.

We would like to share a video from Purple Ella  a disabled content creator, who shares her experience of bereavement. Click HERE to watch the video.

The National Autistic Society suggest the following may help an autistic person who is grieving: 

  • 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.
  • 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.

If you are grieving or know someone who is grieving, please contact our Family and Bereavement Support Team who are happy to speak about support, or guide you to information that may help. You can contact them by emailing or calling 01900 705200