Laura Cox Watson, a Volunteer Coordinator for Marie Curie’s telephone bereavement and companion support, shares her insights on how autistic adults experience grief and key considerations for healthcare professionals.
When I joined Marie Curie’s volunteer service, I brought personal experience of grief and years of supporting a neurodivergent family member. Over time, more adults close to me explored assessment for their own neurodivergence. What stood out was how often their emotional responses had been misunderstood, especially during grief and major life changes. And that misunderstanding often deepened their isolation.
This perspective made something clear in end‑of‑life care: autistic processing differences shape how people receive and express grief. And because autism is a broad spectrum, those responses vary widely. So, healthcare professionals need to approach this with flexibility rather than assumptions.
I also noticed a steady rise in neurodivergent adults contacting our Telephone Support Services, including people who felt that grief had amplified traits they had previously managed comfortably. This reinforced the need for services that recognise and adapt to diverse grief responses.
These experiences led me to research into how neurodivergence influences the grieving process and how our support could adapt. I later developed and delivered training on neurodivergence and grief for Marie Curie staff and volunteers.
I’m still learning, but here are some insights and recommendations from that work that may support colleagues across healthcare settings.
1. Clear, concrete language supports understanding
Healthcare professionals often soften language around death, but euphemisms such as ‘passed away’ or ‘lost’ can create confusion for many autistic people. Clear, direct and factual language supports understanding and reduces anxiety. See helpful guidance on autism and communication from the National Autistic Society.
In the podcast Elephants in Rooms: Neurodivergence and Grief, the autistic presenter describes needing to internally process social interactions before responding. For example, if asked “What do you have on today?” her first instinct may be to answer, “a hoodie,” before realising the question is about her schedule. Clear, direct communication reduces this cognitive load and helps her process information more comfortably.
2. Autistic people process grief in varied ways
Autistic people may process and express grief in ways that differ from neurotypical expectations, as well as from each other, just as every neurotypical has their own unique experience of grief so does every neurodivergent person. Autistic people may:
- find it difficult to identify or communicate emotions
- express feelings in ways that appear unexpected
- focus on practical concerns while feeling overwhelmed internally.
A user’s comments in the Marie Curie Online Community reinforces this:
‘I can struggle more than others with finding the words to express how I’m feeling and closed (yes or no) questions help to get me talking.’
Some autistic people may also ‘scramble,’ showing an emotion that’s the opposite of what they feel, to mask fear or uncertainty. This can appear as very practical or factual questions.
A celebrant colleague described her autistic son becoming angry after a bereavement before saying, “I think I feel sad.” After funerals, he often asks, “Did people cry? Do they feel sad?” as a way of calibrating his own response.
3. Self-soothing and regulation are essential
Sensory overwhelm can significantly affect how an autistic person experiences grief. Hospices, hospitals and funerals introduce unfamiliar sounds, smells and social expectations that may lead to emotional dysregulation or shutdown. Many autistic people are also aware that their responses may be misinterpreted, which can heighten distress. The National Autistic Society offers helpful guidance on sensory processing that can give further insight.
Professionals can support regulation by:
- encouraging a simple signal the person can use to indicate they need time or space
- recognising stimming as a positive self‑soothing strategy
- allowing time for special interests to provide cognitive rest
- asking what helps and listening to their preferences.
4. Reducing uncertainty helps autistic people process grief
Uncertainty can be especially distressing for autistic people, and during bereavement it can sharply increase anxiety and overwhelm.
The death of someone close often brings further losses such as routine, predictability and stability, and these are significant.
Through Marie Curie’s telephone support, we see how challenging these transitions can be.
Healthcare professionals can offer support by:
- preparing the person for new environments or routines and explaining why these changes are happening
- giving advance notice of visits or appointments and discussing what these might look like and what they might want or need
- answering questions clearly and honestly.
See the National Autistic Society’s insight on why order matters for some autistic people.
5. Person‑centred care matters most in autistic grief
The National Autistic Society reminds us that support should remove barriers, not aim to change who a person is. Our role is not to shape how an autistic person grieves, but to meet them where they are and offer support that respects and empowers.
As one Online Community member put it:
'Listening and adapting goes a long way.’
And as Jody O’Neill writes in the play, What I (Don’t) Know About Autism:
‘Autistic people are not sick. We do not need fixing. We are just wired differently.’
For me, the most effective approach is to recognise difference, set aside any unconscious bias and learn directly from autistic people themselves. Their insight is essential if we want to support them well through grief.
Supporting autistic people through grief is about removing barriers and honouring and understanding the range of responses and coping mechanisms. By offering clarity, predictability and person‑centred care, we can create environments where people can grieve in a way that’s respected, validated and supported.
It’s also important to recognise that some autistic people may have additional needs. Research shows that one in three autistic people have a learning disability, which can bring additional challenges during grief. At Marie Curie, we’ve developed a range of resources in collaboration with adults who have learning disabilities, to support communication and understanding. This includes guidance for professionals. Explore our range of learning disability resources.
