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
Weirdness
3 min read

Why we project ourselves on Lazarus

Lean into the weird around the ‘unreveal'd’.

Jamie is Associate Minister at Holy Trinity Clapham, London.

A Vincen Van Gogh painting of Lazarus rising from his bed as his astonished sisters lean toward him.
The Raising of Lazarus (after Rembrandt).
Vincent van Gogh, CC BY 4.0, via Wikimedia Commons

Tennyson's poem In Memoriam contains a section about the man Jesus famously raised from the dead, Lazarus, and in it he writes: 

Behold a man raised up by Christ! 

The rest remaineth unreveal'd 

He told it not; or something seal'd 

The lips of that Evangelist 

That evangelist, St John, writes precious little about Lazarus himself. Lazarus is supposedly the main character in the story, but we see far more about his sisters Mary, and Martha, and most of all, Jesus himself. But because Lazarus is a largely anonymous figure, intriguing all sorts of people like Tennyson, we can project ourselves onto him. He emerges from the tomb with graveclothes, and it seems we don't fully see him, but we see ourselves on those graveclothes. His endless capacity to capture something of the human condition is evidenced by appearing in Moby Dick, Crime and Punishment, and Mark Twain writes about him, right through to Nick Cave and David Bowie, with a song written when he was terminally ill. 

It's definitely an account that falls into the 'weird' category. Not only does Jesus raise someone from the grave, but at first his response to Lazarus' grieving sisters seems inexplicable. Regardless, Lazarus is perhaps a good match for us because of our own fears of death. 

It's also why the words of comfort that Jesus offers Martha after Lazarus' death are used in Christian funerals. As a priest, as I process in with the coffin, I read: 

'I am the resurrection and the life. The one who believes in me will live, even though they die; and whoever lives by believing in me will never die.’ 

Just as these words were a great comfort to Martha, these words are a huge comfort to people as they come to the funerals of their loved ones. 

But just like Lazarus isn't actually the main character in this story, at someone's funeral, they are also not the main character in the story. They've died. Funerals aren't just for dead people. Funerals are for the people coming to the funeral. Because Jesus doesn't just say, 'whoever lives by believing in me will never die.' He doesn't just leave that there hanging in the air. He explicitly asks Martha the question: 'Do you believe this?' We are confronted with the same question, non-rhetorically. 

Jesus is asking us to believe something quite extraordinary about the nature of life that is worth considering in the assisted dying debate: that resurrection is not pie-in-the-sky, but a quality and quantity of spiritual life that can begin today, only interrupted by physical death and the bodily resurrection. As someone who lives with disability said to me recently about the debate on assisted dying, 'I'm interested in assisted living'. We could all do with a little assistance. 

Bizarrely, Jesus identifies himself as the resurrection and the life. And so even more intriguing than placing ourselves in the tomb of Lazarus, can be placing ourselves in the death and resurrection of Jesus. The anguish, desperation, exasperation of the sisters toward Jesus (helpful for us to recognise our own ability, and need, to grieve honestly) is met with not only grand declarations about Jesus' divinity, but demonstration of his humanity. Twice in this sequence we see Jesus deeply moved and troubled, most pithily and famously encapsulated in the shortest verse in the Bible: 'Jesus wept.'  

His emotion here, much more raw in the Greek, is appropriate not only to Lazarus' death, but also his own death that is about to come on the cross. Amidst the compassion that drives people to different conclusions in ethical debates, it is worth us considering an even deeper compassion that drove Jesus to raise Lazarus and to go to the cross. 

Although there is much in our lives and in faith which is mystery and 'unreveal'd' as Tennyson would say, our own inability to control our own lives and deaths is met by Jesus in all his humanity and divinity. 

All great artists lean into - rather than avoid - the weird. They also seek to honestly address the human condition in all its suffering, mortality and hope. No wonder so many over the centuries have projected themselves and their characters onto Lazarus as his grave clothes unravel. 

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