Behind the data: the social messages physician assisted suicide sends

If intense suffering caused by society drives autistic people to seek assisted death, then society has failed. Henna Cundill seeks the stories behind the data about such deaths.

Henna Cundill

Henna is a researcher with the Centre for Autism and Theology at the University of Aberdeen.

A hand rest gently on another outstretched hand.

Alexander Grey on Unsplash.

Statistically speaking, autistic people are far more likely to die by suicide than non-autistic people. They are also, statistically speaking, far more likely to die by physician assisted suicide than non-autistic people, in countries where this is allowed.

For example, in a study of 927 people who sought physician assisted suicide in the Netherlands (where this is legal) 39 of them were autistic. That’s about 4 per cent, but the prevalence of diagnosed autism in the Netherlands is only 1-2 per cent. The researchers go on to note that 21 per cent of these 39 people cite autism or intellectual disability as the “sole cause of suffering” that had prompted them to request assistance to die.

I don’t like speaking statistically. For a start, 21 per cent of 39 people is 8.19 people, which raises obvious questions. A little digging reveals that what the researchers mean really is eight people. Eight people with eight unique stories that include an account of autistic suffering so intense that they asked for help to end their lives.

But we do not have those stories, not really. Included in the report are carefully anonymised excerpts from the physicians’ notes, and this is the nearest that we can get.

‘The patient suffered from his inability to participate in society [ … ] [He] was not able to live among people, because he was easily overstimulated. This made him isolated’ (2019 (22), male, 70s, ASD)

‘The patient had felt unhappy since childhood and was persistently bullied because he was just a bit different from others [ … ] [He] longed for social contacts but was unable to connect with others. This reinforced his sense of loneliness. The consequences of his autism were unbearable for him [ … ] The prospect of having to live on in this way for years was an abomination to him and he could not bear it’ (2021 (26), male, 20s, ASD)

The debate about legalising physician assisted suicide in the UK is ongoing, and the British Medical Association have provided a helpful guidance document which sets out the main arguments, both for and against, without making a recommendation either way. In the document, they observe that the reasons people ask for assisted suicide are predominantly personal and social, not clinical, and also that “laws send social messages.” I agree that laws do that, and I also think that those seeking assisted suicide send social messages too.

For example, even just from these two tiny excerpts, I hear that a life worth living is one where people can participate in society and have social contacts, even if they are a “just a bit different from others.” It would be good to hear more. It would be good to sit down over a cup of coffee with each of these two men and ask them all my questions about their lived wisdom when it comes to autism.

I could ask “2019 (22), male, 70s, ASD”:

What causes the overstimulation - are there places where you don’t feel that?

Can we create more such places for autistic people to socialise?

And I could ask “2021 (26), male, 20s, ASD”:

What makes you feel different?

What kind of social contacts and connections do you think that you are looking for?

But of course, I can’t do that, because these two men have been assisted to die.

The word ‘welcome’ is striking to me here. What does it mean to welcome someone, not to merely include or tolerate, but to really welcome someone.

When approached for comment, autistic theologian Claire Williams said:

‘There is something of a personal and social tragedy reflected in these cases. If we understand that much of the difficulty that autistic people suffer is caused by society – as per the neurodiversity paradigm – then it is the case that these two nameless men were failed by society. They felt that their lives could not find a place in an unwelcoming world. It is, of course, their choice to end their lives but I do also think that God chose to start their lives and finds them to be infinitely valuable. They were both made in God’s image and reflect something of it. That they felt there isn’t a place for them that is suitable is a tragedy because society should do better to welcome them.’

The word ‘welcome’ is striking to me here. What does it mean to welcome someone, not to merely include or tolerate, but to really welcome someone, even if they seem ‘a little bit different from others’? Dr Léon van Ommen, another theologian who writes about autism, suggests that it is a matter of making oneself and one’s resources fully available to that person, to the point where they feel that you belong to them. This is not to promote relationships with unhealthy power dynamics, but to highlight that when a person feels truly welcomed by another, they feel the opposite of owing a debt or being a burden – they feel they are of value, that you would be lacking something without them.

I feel we are lacking something without you, “2019 (22), male, 70s, ASD”. And I feel we are lacking something without you, “2021 (26), male, 20s, ASD”. Not to forget the 37 others who are a little like you. We can pause to reflect on the social messages that you have sent, what you are teaching all of us about what it means to live a “good” life. But I am sorry that you have all died now and we cannot hear more.

Whether people in the UK should be able to choose physician assisted suicide, I, personally, am not yet sure. Like the BMA, I see and respect the very good arguments both for and against. But eight people have chosen physician assisted suicide due to autism or intellectual disability, and when it comes to the social messages that sends, I feel compelled to sit down and listen.

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Life & Death

8 November 2023

4 min read

What they don’t tell you about when someone you love dies

Sharing her experience of her husband’s death, Yvonne Tulloch charts grief’s journey and shares signposts to help. Part of the How to Die Well series.

Yvonne Tulloch

Yvonne Tulloch is Founder and CEO of AtaLoss, helping bereaved people find support and wellbeing.

A group of grieving friends with their hands on each others backs.

The Good Funeral Guide on Unsplash.

Turn on the news and death is all around us. Yet somehow, we think it will never happen to us. In one sense that’s good. We have a child-like innocence that protects us from the harsh realities of life.

A few years ago, as a church minister, I thought I knew about death. I’d been trained to take funerals and had supported families when a loved one had died. But it wasn’t until I was bereaved myself - when my husband died suddenly of a heart attack - that I realised how little even I knew.

Although busy, life had been good until then. My husband had a successful job, my own work was going well and our three children were flying the nest and finding their feet in university. Little did I know that in one, short phone call from a colleague, our lives would change forever.

Simon had been found dead in his hotel in Spain, and I was faced with telling each of the children and his mother, the worst news anyone could convey. Concerned about social media the news was embargoed until all family members knew, then I had to go to Spain to find, as well as identify the body, and bring him home. I had to work out our finances – no one knew what we had to live off – close accounts and put things in my name. I discovered our house wasn’t insured, nor our car for me to drive, that bank accounts were frozen, and that no organisation is geared up to help. Everyone insists on speaking to the account holder or seeing the actual death certificate before being willing to oblige. I had a funeral and thanksgiving to organise – two big occasions in just 3 weeks - and a mountain of admin to deal with, which would be difficult at any time.

Grief is a journey of adjustment of who we are to a new existence – one that takes a long time and never comes at a convenient time.

We’ve been a death-denying culture, I now realise, for many years. With death invariably happening in hospices or hospitals, we’ve pushed death away and pretended it doesn’t happen. Consequently, we’ve lost knowledge of bereavement and the art of support. We’ve tended only to think about preparing for funerals and then counselling if the person isn’t doing well. But what about all the other help that’s needed? Understanding and support is necessary in all manner of ways. Bereavement is one of the most stressful times of life, affecting everyone sooner or later and every part of their life. Grief is a journey of adjustment of who we are to a new existence – one that takes a long time and never comes at a convenient time.

At first most of us are shocked or emotionally numb; we run on adrenaline and we’re in survival mode. At the funeral others can think we’re doing well, and we can too. But it’s after, when the real sadness tends to hit, when the future must be faced and by then support has dropped away.

Many of us experience a roller coaster of changing reactions and responses which we don’t recognise as us or don’t associate with grief.

There are the physical reactions, for instance. I couldn’t eat, I couldn’t sleep, I was cold and I shook for months, I had a heavy ‘weight’ in my gut and was taken to hospital three times with suspected heart problems - our bodies are always in tune with our emotions.

And there are the psychological reactions. We can experience anxiety, anger and guilt; we can’t concentrate or remember, or function to do the most basic of tasks. I kept thinking I was seeing Simon and had a psychosis which made me feel separated from the world. We can think we’re going mad.

Grief is a natural response to loss which we need to work through for our future wellbeing.

For me help came from two initiatives I was fortunate to find: Care for the Family’s Widowed Young Support and The Bereavement Journey course run by a church in London. In each of these I discovered others who had been bereaved, who understood what I was going through and who helped me to navigate the alien territory I found myself in. They also helped me to understand my spiritual responses which had been the biggest surprise. I had never doubted my Christian faith but with bereavement, that too was challenged, and God, who had always felt present, suddenly disappeared. I realize now that this is natural. Grieving is a process of deconstruction and reconstruction of meaning, and therefore some of whatever meaning we had before the person died, will deconstruct as we grieve.

Roll on a few years and I’m on the other side, running a charity helping people to understand that in our death-denying society bereavement impacts greatly, and that grief is a natural response to loss which we need to work through for our future wellbeing. Support is needed in various ways which we direct to through our signposting website ataloss.org. And I’m helping people myself through The Bereavement Journey course to find healing and hope, offering also spiritual support for the faith questioning I find most people have. Unfortunately, though, because we’ve neglected death, many haven’t been supported through a bereavement in the past and are carrying loss which is unresolved.