Behind the data: the social messages physician assisted suicide sends to the autistic

If intense suffering caused by society drives autistic people to seek assisted death, then society has failed.

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 four per cent, but the prevalence of diagnosed autism in the Netherlands is only one to two 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.

Article

Comment

Death & life

29 October 2024

4 min read

There’s fear or fascination as cultures confront death

If Western society discussed death more openly, would Halloween’s appeal hold such sway?

Rahil Patel

Rahil is a former Hindu monk, and author of Found By Love. He is a Tutor and Speaker at the Oxford Centre for Christian Apologetics.

A bronze statue of a resting angel sits atop a low stone grave.

A grave in a Dresden cemetery.

Veit Hammer on Unsplash.

Watching Christians jump and sing “death is defeated” was a strange experience.

As a new believer in Christianity from a Hindu background, I was struck by how Christians approached death. While I had seen reincarnation as a path to heaven, I couldn’t understand why the church either hesitated to talk about death or celebrated it so intensely. Why were Christians sometimes dancing and other times, silent about death?

During my early years in Christ if ever the topic of death arose from the fun times I was having with Christian friends it was almost always met with a dead silence - excuse the pun. On one occasion, the husband of a close friend in our small church community had passed away due to cancer. I was one of the first to make a call to his widowed wife. When my friends heard that I had done this the response was unusual, “well done Rahil!” “That’s so good Rahil.” Strange. I was sensitive over the phone, but it wasn’t that hard. Then I asked the others if they were going to make a call and the response was equally peculiar, “erm, I can’t” or “I just can’t do that... ” Puzzling.

Recently, I came across the GodPod podcast, which shed some light for me on this hesitation. In an interview with Dr Lydia Dugdale about her book The Lost Art of Dying, a surprising statistic caught my attention: “In the 18th century, one-third of church sermons were about death and eternity.” I had to play that line back multiple times. In contrast, today’s sermons often focus on personal purpose, calling, or spiritual gifts. All important, but are we missing a vital balance—one eye on eternity, the other on our present lives?

Why didn’t the British or ‘international’ media film the funerals taking place in Britain? Why hesitate with death at home and yet have a somewhat fascination with it in the East?

This avoidance of death became even more apparent during the Covid pandemic. When the Delta strain hit India in 2021 it caused a massive widespread devastation and death. The funeral pyres were filling the sacred river banks up and down the country. At one point there was no more wood left to burn the bodies. It had run out! Urban crematoriums were overrun and so people left their deceased loved ones to simply float down the nearest river in the hope that the next life would be easier.

I followed the detailed footage of the funeral pyres and bodies choking various holy rivers. It was meticulously covered by the western media. Even PM Boris Johnson at the time cancelled his trip to India because the Covid death crisis was “out of control.” It’s Interesting how the western media flippantly assumed that death could be controlled. And then an eminent academic in India wrote a remarkable article for Project Syndicate. Brahma Chellaney’s opening paragraph was,

“When reporting on any mass tragedy, a basic rule of journalism is to be sensitive to the victims and those who are grieving. Western media, which double as the international media, usually observe this rule at home but discard it when reporting on disasters in non-Western societies.”

The author’s accurate observation demanded my attention. Why didn’t the British or ‘international’ media film the funerals taking place in Britain? Why hesitate with death at home and yet have a somewhat fascination with it in the East? Although Chellaney uses the concept of ‘grieving’ for his argument, there really isn’t such a spiritual concept across Indic faiths as Christianity knows of it. Of course, there is sadness and loss but grieving in the deep spiritual sense, not really. Is that why the Western media found it easier to cover death in the East? Because the secular (although Christian) West knows of the concept of grief so well at home? Or is it because the West do actually want to confront death without hiding and when they see other cultures do it so openly (and a tad bit casually) they are drawn to it? As morbid as it sounds (and I’ll do the British thing and apologise here) there might actually be a healthy interest with the way certain cultures embrace death that the west is seeking to find an expression for.

Brahmar Mukherji chaired the Department of Biostatistics at Michigan University. In an interview with the Carnegie Endowment for International Peace in 2021 she stated that India as a society sees death differently which is why the death toll along with so many other complex and practical issues was so high in that nation during Covid. They embrace it more easily. I am not promoting reckless behaviour around rules. One can’t play with a rattlesnake and then call it faith. My hope is that the reader finds hope when confronting death with a Christian lens. Why have themes of Euthanasia and Assisted Dying become such a big thing in the West and not in the East?

Which brings me to Halloween. It’s a leap, I know, but think about it: if Western societies and churches discussed death and eternity more openly, would Halloween’s macabre appeal hold such sway? Dressing up as a ghoul or a skeleton seems to be a playful, yet safe way to confront our fear of death—something we’re eager to do from behind a mask. That lighthearted, but jarring moment in the Barbie film comes to mind: “Do you guys ever think about dying?” Maybe that’s the real question we should be asking ourselves. Not just on Halloween, but frequently. How do we truly confront death—with fear, with fascination, or with the hope of something beyond?