“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)

 

The CABS service works closely with families and professionals supporting children and young people who are neurodiverse and grieving. We recognise that everyone grieves differently, especially those with more challenging grief responses where families and schools struggle to understand and manage the impact of death and dying.

We provide psychoeducation groups to families and schools to highlight the benefits of talking about death and dying, which can help bring about change in attitudes toward grief responses and behaviour in children and young people who are neurodiverse.

Parent and Carers Support Groups: 'Supporting parents and carers of neurodiverse children: How to deal with change and loss.'

We understand that supporting you as parents and carers of neurodiverse children and young people who have experienced change or loss, is very important. Often neurodiverse children and young people may experience isolation, bullying and discrimination. They will struggle with accessing adequate support and communicating their needs. In moments of change and loss these difficulties may intensify and it will have an impact on the whole family. It is essential to create systems of care around families and to listen to the voices of neurodiverse children.  

The groups will help professionals to identify the barriers and challenges in providing psychological aid for neurodiverse children and their families, and adapt services to their needs. Research and practice show that timely psychological support provided for families can: improve mental health, help with relationships, assist in managing challenging behaviours, and build emotional resilience.

What the groups are about:

Groups will run on the last Thursday of each month, at Lansdowne House and online, for 1 hour 30 minutes with the following topics:

• Thursday 30th March – “Loss, change and neurodiversity”
• Thursday 27^th April – “Coping with challenging behaviours: what I can do as a parent”
• Thursday 25^th May – “Family traditions and beliefs in managing grief”
• Thursday 29^th June – Communication: conversations within families and beyond”

How could these groups help?

• Support and guidance around having difficult conversations with children you care for about change and loss.
• Provide an understanding of children and young people’s reactions to change and loss, such as anger, anxiety and isolation.
• Learn ways of coping with challenging behaviours.
• Share your experiences with others.
• Reflect on the role of culture, religion and family traditions in managing change and loss.
• Develop new communication skills which may be helpful when talking with children and young people about understanding and managing their feelings.
• Examine ways of adapting to changes in a safe and supportive environment.

What to expect:

There is a limited number of places in these groups so it is essential to book early. It is beneficial to attend all four groups and participants are expected to notify the team 48hrs prior to each group if they cannot attend. This provides an opportunity for others to attend.

Each group will have two important elements: educational presentation and informal group discussion facilitated by two group conductors.

All groups will be conducted by experienced psychotherapists in a safe and supportive manner. The Harlington Hospice team adopts an inclusive and collaborative approach. Participant feedback would be highly appreciated.

How to join:

To join the parents and carers group, please email [email protected] confirming your interest by 24^th February 2023.

Please do not hesitate to contact us if you have further questions.

Call: 02087590453 (ask for Paula Boyle, Ayesha Din or Nana Zhvitiashvili at Harlington Hospice)

Cost:

The group is free to attend.

We work in partnership with:

HACS

Local Schools

GP practices

H4ALL

Young Carers Trust

Hillingdon Mental Health Services

Hillingdon Social Services

‘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 seeks to establish Parent Support Groups designed to provide parents and carers of children living with autism with psychoeducation about grief and autism and to establish a space of peer-support. 

Please click on the illustration to view our research poster and read more about our findings and future plans.

Please do get in touch with us if you would like to learn more about our research poster.

[email protected]

This pilot project has also been granted funding from the National Lottery Community Fund.

Feedback from Parents/Carers:

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.

"The grief education group has definitely helped; it has made me think more about how my son might see and feel his grief. I feel he has been unfairly judged for his grief in the past because of his behaviour. I know now that it’s not that he’s acting difficult, it’s his feelings of sadness and loss."

"I liked when we talked about neurodiversity in positive terms such as continuum, rather than talking about neurodiversity in terms of disorder or deficits."