Navigating grief and loss with someone who has additional needs

Grief is one of the most challenging experiences any of us will face. And even harder when trying to navigate grief and SEND needs. For adults with learning disabilities and autism, processing a death can be especially complex. Changes in routine and unfamiliar emotions can make bereavement feel overwhelming.

But, hiding and /or protecting someone from the truth often causes more long-term confusion. Instead, the  goal should be to provide clear, empathetic support tailored to their unique communication style.

1. Choose somewhere 'safe'

Before the conversation, ensure to choose a comfortable and safe environment to break the news. This environment may help them process the information better and feel safe in expressing any emotions they may feel.

2. Use clear, direct language

When explaining that someone has died, avoid euphemisms like 

• they’ve gone to sleep,
• they've gone to a better place.

Ambiguity can often be confusing. Instead it is best to use clear and direct language they understand. 

What to do: Use direct, honest words like 

• Died or Dead 
• Has passed away

Explain clearly what death means physically, for example, "Their body stopped working, and they cannot come back."

3. Prepare for emotional responses

Grief does not look the same for everyone. autistic individuals and people with learning disabilities may not react with immediate tears or sadness as they may process information differently. It may take them longer to process what death means and how they feel about the passing of an individual they care about.

It might take weeks or even months for the news to register, particularly if the loss alters daily routines over time.

Behavioural changes may occur as a result of grief. Look out for heightened sensory sensitivities, increased meltdowns or shutdowns, changes in sleep or eating habits, or temporary loss of daily living skills.

4. Involve them in funerals and memorials

Excluding a loved one from a funeral out of fear they "won't cope" can leave them feeling confused or unable to talk about where their loved one went.

Give them a choice: Explain what a funeral is and ask if they would like to attend. Use visual schedules, photos of the venue, or even a quick visit beforehand to show them where they will sit. Explain what a funeral may entail, what people will be wearing and that people might be crying.

5. Maintain routines where possible

For neurodivergent individuals, predictability often equals safety. The loss of a key person, especially a parent, family member or primary carer often triggers massive shifts in daily life, housing, or care structures.

Try to keep everyday routines (mealtimes, favourite activities, social groups) as consistent as possible during the initial grieving period. If this is unfeasible, ensure tou clearly explain why there is a shift in the routine and what to expect.

6. Create a safe space to grieve

Abstract conversations about ‘memories’ without the emotional safety to grieve may feel overwhelming and scary. Tangible memory aids provide concrete comfort, this may include: 

• Memory boxes: Collect physical items that remind them of the person e.g. a favourite perfume/aftershave scent, a swatch of fabric from a coat, tickets, or photos.
• Visual storybooks: Create an "Easy-Read" photo book detailing the person's life and acknowledging that they have died.
• Commemoration: Plant a flower, make a photo collage, or listen to the person's favourite song on specific anniversaries.

While bereavement can and will be overwhelming, learning how to properly navigate huge change is an important life skill. There is no ‘right’ way to grieve and support can take numerous forms, but it is important to stay honest and create safe spaces for grief. 

Need more help? Contact the us at Referrals@halowproject.org.uk

Resources: 

Cruse Bereavement Support - Cruse supports people going through bereavement by supplying recources, information and training for children and vulnerable adults. This also includes face-to-face support.

Good grief trust - A charity run by and for bereaved people, provides information and a map of bereavement services.

National autistic society - Provides guides for professional, carers and parents about navigating grief.