Talking about death and dying to a young person with additional needs

I wasn’t surprised to learn that people with learning disabilities experience grief in a similar way to people without learning disabilities. They have typical reactions like anger, denial, sadness and guilt. Expressing grief and putting words to feelings can be so difficult for people with additional needs. A significant change in behaviour may be the first indication that a young person is in distress and feeling powerless to express that distress.

My daughter with Global Developmental Delay (GDD) was 29 when her dad died. He had been on a trial drug for a rare cancer for two years and to all intents and purposes was doing pretty well. Then one day the cancer overcame the drug and within two weeks he was dead. The weekend before he went to the hospice we had an open house, a glorious summer weekend of visitors. Family and friends came from near and far, grandchildren played in the paddling pool, there was laughter and tears, ice-creams and lashings of cake. My daughter witnessed his physical decline, visited him in the hospice, chose and signed a song during his funeral and was the perfect hostess at the ‘bunfight’ afterwards! Everyone was especially kind to her. In the weeks following his death, ‘How is R doing?’ was usually the second question people asked me. My answer was, ‘She appears to be doing really well’, but in retrospect I’m not sure that was true.

R needed to talk about her dad. She wasn’t very good with her timing though, often talking about him when I was trying to ‘hold it all together’. Maybe that was her gift to me? Despite having limited speech and language skills she made me understand that he was watching us, he was a star in the sky – concepts I had not introduced, so someone had kindly been trying to bring her comfort which she in turn offered me.

Whenever she was typically resistant to things, for instance taking a shower or sharing the remote control, those ‘little things’ quickly spiralled out of control, usually ending in tears and a sorrow-filled wail of, ‘I miss my dad!’. Several months later she went through a really distressing phase when she would curl up in a foetal position and became incapable of getting out of bed. At the time I put it down to a significant relationship breakdown and fallout from the Covid-19 pandemic, but with the gift of hindsight I wonder if, due to R’s GDD, delayed grief was also in the mix. I guess I’ll never know.

She demonstrated her grief in physical and behavioural ways. I have to say that there were days when I felt like withdrawing too.

Before my husband died, he managed a County Council day service. Around a third of his clients were people with additional needs, some of whom came to the day centre to give their elderly parents respite. He was often exasperated by the fact that an elderly parent of a mature child with additional needs had died leaving much unsaid, and no preparations made. He witnessed many of his precious clients thrown into a grief they could not explain. He knew they were about to encounter rapid and extreme change in every area of their life, not least where and with whom they lived. None of us know when we will die but the older we become the more inevitable death is. I’m sure he would say to parents and carers, ‘Grasp the nettle!’.

I think that people with additional needs may need more practical support to help them prepare for events and situations that take place after a death, such as visitors and dealing with belongings. It may be helpful to give them opportunities to process their fears and anxieties, and to receive spiritual support where appropriate. Going to the funeral may bring closure. Lighting candles on certain days and sharing photos and stories of the person they have lost are likely to help too but follow their lead, as to when and how much.

I made a photo book of the last few years of my husband’s life. R loves to look through it and share special details that I have long forgotten. She can’t remember three things in a list but in other ways her memory is simply awe inspiring!

I came across an article by The Thinking Person’s Guide to Autism1. Here is a summary of their findings, but I would encourage you to read the whole article: Helping autistic children understand death and dying.

• Most autistic people learned about death through observation of people, animals, and plants.
• Learning about death was a process rather than a one-time event.
• A majority of autistic adults and children want factual statements, not euphemisms about death.
• Autistic people want the right amount of information about death – not so much it overwhelms, but not so little their questions go unanswered.
• Don’t expect autistic children to express grieving emotions in the same way or on the same timetable as the people around them.
• Don’t avoid the topic.
• Don’t overwhelm a child with too much emotion or more involvement than they want.
• Don’t lie or underestimate a child.
• Don’t teach about death through threats or other frightening interactions.
• Don’t give false reassurances like “I’m not going to die for a very long time.”
• Don’t treat kids with a one-size-fits-all formula.
• Don’t deny the family’s religious beliefs.

There is also a book on this subject, written especially for an autistic audience: Arlen Grad Gaines and Meredith Englander Polsky, I have a question about death: Clear Answers for All Kids, including Children with Autism Spectrum Disorder or other Special Needs (21 March 2017).

If you are dealing with the death of a loved one and would like some support, visit the bereavement support section of our website or contact us.

¹ Shannon Des Roches Rosa, ‘Helping Autistic Children Understand Death and Dying’, Thinking Person’s Guide to Autism, 1 October 2017, https://thinkingautismguide.com/