Feeling Grief Differently: Adults with autism and ADHD share their experience of bereavement
In 2025, Healthwatch Kingston spoke to adults with ADHD and autism to discuss their experiences of grief and bereavement.
This work was made possible by the ICCM Metals Recycling of Metals scheme via Kingston Voluntary Action.
We attended The Larch, a social club for adults with autism, and met with experts by experience, Involve, to talk about people's thoughts and feelings on subject, find out what had helped them through a bereavement and what would have helped.
We have frequently collaborated with Involve in the past, whereas our relationship with The Larch is a newly established connection. To build rapport with attendees of the club, the team arranged a series of informal ‘Get to know you’ introductory sessions to share information about Healthwatch Kingston's work and participated in activities such as board games.
This approach helped to build trust, and allowed for informal conversations to discuss the topics covered in the recordings which helped guide the direction and ensure those who participated in the recordings were prepared and supported to discuss sensitive topics.
Additionally, the team partnered with Kingston Bereavement Support to develop a support sheet for participants involved in the project.
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Through our conversations we heard about the importance of ongoing support for people with autism and ADHD, how they felt that making time for positive memories was helpful, and that they found support when speaking to family and friends.
We discussed the distress felt when healthcare professionals and services were not prepared to support someone through a bereavement, and how more information about processing difficult emotions, and the feelings involved in grief could be beneficial.
We also heard that it was important to know that support from a professional would be inclusive of neurodiversity and the different ways people experience grief and loss.
You can listen to the conversations below, please be aware that the recordings contain discussions of a sensitive nature.
We will update this page weekly as episodes are released.
Episode One: Adults with autism and ADHD share their experience of bereavement
Scott sits down at the Larch, a social drop-in club for adults with autism, to talk about the different ways Emma, Kaylan, Omar, Paul and Robbie have coped with bereavement, and how they prepare for loss.
Listeners should be aware that this episode includes a discussion about the death of an infant.
Experiences of grief and loss in south west London
Commissioned by NHS South West London, and working in partnership with Kingston Voluntary Action, we previously engaged with communities in Kingston about their experiences accessing services and support for bereavement, loss and grief.
“I felt numb, not sure what to do, but I needed someone to acknowledge my pain and try to understand me.”
We wanted to better understand how culture, language, faith, belief and life philosophies shaped experiences of grief and the support received. Encouraging input from organisations across south west London, we received insights from 13 gaps initiative workshops.
“People who actually respond and don’t just leave you on a waiting list. It is important that when you seek help, someone is there to listen. If the response time is too long, you may shy away from getting the help and support you need.”
We heard how people characterised good support as local, easy to access, human, compassionate and timely. For many, knowing what support was out there and available to them was a challenge to accessing what they needed, when they needed it.
Bereavement, grief, faith and spirituality services and support
Every loss is a very personal experience. You may find that it helps to talk to someone who is not part of your family or close circle of friends.
Use the our page to help find the services and support that are right for you.
