Article
Assisted dying
Death & life
4 min read

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.
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
Creed
Death & life
Easter
Film & TV
4 min read

Don’t die: the relentless pursuit of life

If there was a way beyond death, shouldn't we give up everything to find it?

Josh is a curate in London, and is completing a PhD in theology.

A man stands in his home wearing a black t-shirt that reads 'DON'T DIE'.
Ryan Johnson at home.
Netflix.

In the days before my daughter's birth, I was reading about the fear of death. Ernest Becker won a Pulitzer Prize in 1974 for his book The Denial of Death. In it, he argues that our lives are structured around the fear of death. In the posthumously published follow-up, Escape from Evil, Becker writes:

"Man wants to persevere as does any animal…but man is cursed with a burden no animal has to bear: he is conscious that his own end is inevitable."  

For Becker, human culture is really a series of attempts to avoid or transcend the reality of death. We follow charismatic leaders in the hope of becoming part of something greater. We have children in the hope that something of us will last beyond the span of one lifetime. We collude to marginalise pensioners and prisoners and any other reminders of our frailty, hiding them away so we can briefly pretend at immortality.  

Last week I thought of Becker when I watched Don’t Die: The Man Who Wants to Live Forever on Netflix. The documentary follows Bryan Johnson, who made his millions in tech and is now going to extremes to undo the impact of ageing on his body. An exacting routine of dieting, sleep, fitness and medication is augmented by riskier interventions, such as experimental gene therapies. 

As Johnson tells it, his past struggles with mental ill health and suicidal ideation led him to pursue a life less reliant on his mind. He seeks instead to listen to what his organs tell him they need via algorithms and diagnostics: fallible humanity corrected by data. 

Johnson is resolute that it is not fear of death that drives the enterprise but a desire to live, particularly to live as long as possible with his son. One of the documentary’s strangest and most touching scenes is an inter-generational plasma transfer. There is evidence that plasma from a younger donor can have a de-ageing effect on a recipients' organs. So, Bryan decides to give his dad some of his plasma and his son gives him some plasma. Each of the three men, we learn, have experienced isolation after leaving Mormonism. The transfer becomes a kind of founding of a family outside the faith they have each rejected and been rejected by. 

Johnson’s pursuit of longevity now plays an equivalent role in his life to that faith– not just as a source of belief and human purpose, but of human connection. The documentary ends with a montage of "Don't Die" communities around the world hiking and dancing and celebrating life together.  

In the months after my daughter's birth, I recognised something of what Becker names. Here is someone who will outlast me, something of me will transcend the limits of my life. And here is someone who reminds me of those limits. Here is this great gift and joy who will sit in the front row at my funeral: the embodiment of life’s goodness a witness to its end.  

Are we wrong to fear death? If there was a way beyond it, shouldn't we give up everything to find it?

There is more going on in Bryan Johnson and the wider de-ageing movement than Becker's analysis would perhaps allow. Fear of death is not the only story here. When is it ever, really? Fear only makes sense alongside—and in light of— goodness, life, gift. To fear loss, you must have something to lose.  

And yet, the story Becker tells about culture does seem to ring truer in the years since his death. As technology improves, death's denial becomes more convenient. As the natural world degrades, it becomes more compelling. And as wealthy men become wealthier still, their denial on behalf of us all becomes ever more creative.  

And who can blame us—any of us? Are we wrong to fear death? If there was a way beyond it, shouldn't we give up everything to find it? 

This Wednesday, Ash Wednesday, marks the beginning of Lent, the Christian season of reflection and self-denial. On Wednesday, I will receive an ash cross, and as I draw that same cross on forehead after forehead, I will repeat these words:  

"Remember you are dust and to dust you shall return,  
turn away from Sin and be faithful to Christ."  

I will hear the invitation, in my voice and not my own, to give up the futile theatrics of a deathless life. I will pray for the strength to live what I have spoken. I will say goodbye to those who I marked, each of us now a signpost to our shared mortality. And then I will go home to yoghurty hands, bathtime songs and giggles at the funny smudge on my face.

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