Bereavement support for neurodivergent children and young people

Project overview

Harlington Hospice’s Child and Adolescent Bereavement Service (CABS) is a team of Health and Care Professions Council (HCPC) registered Art Psychotherapists working to support children pre- and post-bereavement in the London Borough of Hillingdon.

During the COVID pandemic, there was an increase in the number of young people being referred to CABS. A significant number of these young people were living with autism, attention deficit hyperactivity disorders (ADHD), obsessive compulsive disorder (OCD) and other neurodiversity.

This cohort of young people had already been struggling with their mental health during lockdown, and their grief symptoms were presenting differently to their neurotypical peers. Neurodivergent young people can find it more difficult to access mental health support than their neurotypical peers, due to barriers including communication challenges. This can create inequity and mean there is a lack of bereavement provision for neurodivergent people. 

As a result, the CABS team realised the need to adapt their service to better support neurodivergent young people and their families.

Outcomes

The CABS team has worked hard to build a network of bereavement support for neurodivergent young people. Referrals into the service come from around the local authority: social services, Special Education Needs and Disabilities (SEND) teams and schools as well as community groups such as Hillingdon Autistic Community. Families can also self-refer. CABS saw a 37% increase in referrals for neurodiverse clients in 2022.

CABS has delivered presentations in schools to raise awareness of the service and help staff to support young people. They have also presented to families, GPs and safeguarding leads in the borough.

The team have worked hard to remove some of the barriers for neurodiverse people wanting to access the service, for example:

• adapting therapy rooms that might cause sensory overload
• visiting young people at school (in an environment they know) rather than expecting them to come to the Hospice
• offering flexible times for therapy
• creating videos to introduce young people to their therapist and the bereavement service
• developing the website to provide more information for families in advance of therapy
• using neurodiverse affirmative language.

With extra funding from the National Lottery, CABS has been able to launch psychoeducation groups for parents and carers. These groups aim to help parents and carers better understand their children’s grief and enable them to access peer support.

Key facilitators

CABS works collaboratively with all the professionals involved with a child. Children and young people are involved in writing the summary of their therapy sessions, which are then sent to their GP, school, family and any other services involved in their care. This ensures the young person’s voice is heard and that everyone is on the same page.

The CABS Lead attended a local borough-wide Autism Strategy Group meeting. Through this they raised awareness of the impact of grief on neurodivergent young people, with the aim of making sure grief and loss are recognised as a significant aspect of children and young people’s lives.

CABS has adapted its recruitment requirements to make sure all therapists have an understanding of working with young people on who are living with autism and neurodiversity.

Challenges

CABS recognised there was a lack of training resources to upskill the therapists in their team. In partnership with the British Association of Art Therapists, the team carried out a survey of 50 therapists to understand the ways they address bereavement and loss with neurodiverse clients. They found that 81% of therapists had not received specific training in this area. The team are continually aiming to overcome this by working with local community groups to share knowledge and skills. The Service Lead lectures to trainee Art Psychotherapists at a London University on working with neurodivergent people who have experienced grief and loss.

The topic of grief and neurodiversity is under-researched and under-represented in literature. The team is collating relevant resources and papers in order to construct a better understanding of challenges and possibilities of working with bereaved neurodivergent children. CABS conducted a series of in-depth interviews with parents of neurodiverse children and young people in order to incorporate their views and experiences as service-users into the research.

Neurodivergent young people who are dealing with emotions that are difficult to explore and express, can often display challenging behaviour or find it difficult to engage with one-to-one support. This means it isn’t always appropriate or safe to provide one-to-one therapy. CABS carries out risk assessments and trauma screening for the young people it supports, and offers alternatives where necessary, for example working with a family together rather than an individual young person.

The number of referrals increased by over a third during 2022, which presented challenges for service delivery. CABS aims for all new referrals to wait no longer than 3 months. During this time the team offers alternative means of support to families, such as providing resources, contacting schools to find out what support is in place and advising parents and carers. 

Try not to work in isolation. The bereavement service is only one part of the child’s system, and should work together with other organisations to provide holistic support.

It is crucial to have robust procedures – carry out risk assessments and therapy assessments before starting work with a neurodivergent young person.

Make sure you are continuously evaluating and improving your service to meet the needs of children, young people and their families. Carry out regular team reviews to improve the quality of the service and confidence of therapists.

Establish therapeutic interventions based on evidence-based practice and theory whenever possible. 

Practice in a culturally sensitive and respectful way - the grief process may be determined by family traditions and religious beliefs.

There are a range of ways you can adapt your service to meet the needs of neurodivergent clients.

Remember that every child (and every family) is different. They are the experts! Be led by them and what they need.

You could:

• provide sensory resources
• offer flexible times for therapy
• involve family members as needed
• assess the suitability of the environment
• identify barriers for engagement
• provide a wide range of art materials
• use a variety of communication skills (including art making).
• use neuro-affirmative language and avoid talking about “deficits” or “disorders”.

The CABS team has made links with University College London (UCL) to continue research.

They also work in partnership with Goldsmiths University London, facilitating Student Art Psychotherapy placements.

The CABS team will be offering support groups for parents and carers of neurodiverse children, which are funded by the National Lottery.

CABS is also investigating sources of secure funding to enable the service to grow and reach more people, particularly those from marginalised groups who might experience barriers to accessing support.