Neurodiversity and grief
We recognise that everyone grieves differently, especially those who are neurodivergent and whose families and schools may struggle to understand and manage the impact of death and dying.
“Neurodiversity describes the idea that people experience and interact with the world around them in many different ways; there is no one ‘right’ way of thinking, learning, and behaving, and differences are not viewed as deficits. The word neurodiversity refers to the diversity of all people, but it is often used in the context of autism spectrum disorder (ASD), as well as other neurological or developmental conditions such as ADHD or learning disabilities. Neurodiversity advocates inclusive non-judgmental language.”
Harvard Medical School, Baumer, N., Frueh, J, 2021
Our CABS service works closely with families and professionals supporting children and young people who are neurodivergent and grieving.
We provide psychoeducation groups to families and schools to highlight the benefits of talking about death and dying, which can help bring about changes in attitudes toward grief responses and behaviour in children and young people who are neurodivergent.
Parents and carers attending psychoeducation groups have shared with us that they have gained increased confidence with new strategies in coping with their children’s reactions to grief and loss.
Using a Social Story to help explain bereavement and grief
The idea of a Social Story was first developed by Carol Gray in 1991. Social stories can be a positive way of communicating which can help someone to process information in a manner that it suited to them. They can alleviate anxiety around change or new environments by giving clear, concise and consistent information.
Social Stories are made of short, concrete sentences that explain a particular event, or situation, in a way that some autistic people find helpful.
They can help children and young people with autism understand a variety of situations, including bereavement and grief.
A Social Story might not be effective on its own in complex situations such as a grief, but it might have a powerful impact when combined with other tailored strategies. Social Stories can give an individual a sense of understanding and reassurance.
Things to consider when writing a Social Story for an individual:
Social Stories will not work for everyone and are not always appropriate.
They must be tailored to the individual, with a person centred approach.
- Gather appropriate information needed, about the situation or event and about the individual you will be telling the story to.
- One or more Social Story may be needed. For example:
- Someone has died
- What happens next
- Going to a funeral
Age-appropriate pictures and/or symbols can be helpful when conveying complex situations or ideas.
Social Stories should be written in a concise manner regardless of the complexities of the situation.
Any Social Story should answer six questions: where, when, who, what, how and why?
As a person develops so should their Social Stories e.g., more language or questions.
It is important to only use gentle and supportive language, rather than ‘Do Not’ sentences, shame or guilt.
When talking about someone that has died use their name and relationship to the individual.
More information about Social Stories can be found here:
Grief and Neurodiversity: Working together to support pre and post bereaved children and young people
In November 2022 the CABS team presented a research poster at the Annual National Hospice UK Conference, Glasgow. The poster was voted by the British Medical Journal Supportive and Palliative Care as the winner of the Hospice UK Conference poster exhibition.
The research centres around CABS’s pilot project which has established Parent Support Groups designed to provide parents and carers of children who are neurodivergent with psychoeducation about grief and neurodiversity and to establish a space of peer-support.
This pilot project has also been granted funding from the National Lottery Community Fund.
Please click on the illustration opposite to view our research poster.
Please get in touch with us if you would like to learn more, cabsreferrals@harlingtonhospice.org
Learn more about CABS research project
We work in collaboration with the following organisations
Local Schools
GP practices
Hillingdon Mental Health Services
Hillingdon Social Services
Hillingdon Autistic Care & Support (HACS)
HACS are committed to raising awareness, knowledge, and understanding of autism.
Young Carers Trust
Young Carers Trust aims to mitigate the impact of caring on young people through the provision of emotional support, school liaison, information and advice and regular social activities.
H4All
H4All is a partnership of five prominent third sector organisations in Hillingdon Borough, including Harlington Hospice, to deliver various wellbeing and community services.