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.  

Column
Creed
Death & life
Suffering
4 min read

Dressing up in the dark: what Halloween reveals about our uneasy age

Why Halloween feels darker this year

George is a visiting fellow at the London School of Economics and an Anglican priest.

Skeleton figurines clothed in Victoria outfits.
Wallace Henry on Unsplash.

Something bothers me about the approach of this years’ All Hallows’ Eve on 31 October and its accompanying night-time Halloween parties, like an irksome background unease at an encroaching darkness behind the childlike cosplay of the event itself. 

God knows, there have been infinitely darker years, some of them within living memory. Two world wars, one of them containing the Holocaust and it doesn’t get darker than that. Genocides, such as Rwanda’s, and famines, from China to Russia to Ethiopia. Terrorist atrocities: Munich, Lockerbie, Madrid, 9/11.  

Mass murders of children: Dunblane, Peshawar, Sandy Hook, Southport, to name a few in such a grim litany. Harder to imagine, because they’re further away culturally in either time or place, are the great plagues, conflagrations and disasters of history: The Black Death, Indian Ocean tsunami, Hiroshima.  

So one wonders if it’s impertinent to feel uneasy about Halloween this year. I suspect it’s the discomfort of something bubbling under and as yet unseen, like unexploded magma or the unbearable tension of a faultline threatening to give way. 

To name it is to call out a most fragile world peace – the pretence of a peace in the Middle East that cannot hold; a peace process that hasn’t even started between Russia and neighbouring Ukraine. Both presided over by an American president who at best isn’t up to securing either and, at worst, has zip interest in democratic process and is only in it for himself. 

Then there’s apparently unstoppable mass migration, driven by climate change, to western economies already going to hell in policy-free handcarts. The creeping re-growth of nationalism and antisemitism, social media fuelled hatred of refugees, the collapse of trust in institutions of state in the UK’s unwritten constitution, such as the royal family, parliament, the police and the Church. Grooming gangs and trafficked sex-slaves; we’re not in the gloaming of dusk – it sometimes feels like night has fallen. 

At what price, then, do we dress our children (and ourselves) as ghouls and witches and demons and make jack o’lanterns to celebrate the dark side at Halloween? It’s the question at the heart of a debate that customarily divides between those of us who say it’s just a bit of fun and we shouldn’t be spoil-sports, against others who warn censoriously about conjuring up the devil, who once abroad will play havoc with those who so foolishly summoned him. 

That’s a fairly pointless argument, as the positions just get repeated and that doesn’t get us anywhere. More fruitful may be to examine what the dark side is, what it is we’re conjuring, if anything, and whether it plays any role in what we fear we may be facing, which ranges from the breakdown of the world order, to great wars and, not to put too fine a point on it, an apocalypse. 

Stumbling about in the dark, we’re bound to trip over what’s called theodicy – the theological study of how a supposedly all-loving God can tolerate human evil. One of the more recent and most accessible contributions to this school comes from the US journalist and academic Brandon Ambrosino, who imagines the pursuit of theodicy not to be climbing stairs of knowledge, but the descent to a dark basement: “If the living room is where we ask how exactly God moved Trump’s head out of the way of the shooter’s bullet, the basement is where we ask if God caused the bullet to end up in a fire-fighter’s body.” 

One of Amrosino’s conclusions is that “evil is not properly a thing… Evil is nothing, literally [his italics]. It is a void in the fabric of God’s creation.” This concept of evil – the dark, as any parent would comfort a child – as empty is appealing. In the dark of that basement, there is nothing there but hope.  

This idea of evil as a void, or moral vacuum, is told in the story of a student (not young Albert Einstein, as widely claimed) who demurs when taught that the problem of evil proves the non-existence of God. “Does cold exist?” asks the student. Of course, replies the teacher. But cold is only the absence of energy, which creates heat. Likewise, does darkness exist? Yes, but it has no wavelength, so it is only the absence of light. 

What brings the energy of light and heat, like why there is something rather than nothing, is too big a question for now. But it may go some way to addressing the darknesses listed in the first half of this column.  

And perhaps it’s a thought to carry into this Halloween. Children dressed as undead phantasms, with Mum’s lipstick tracing blood trickles from their mouths, aren’t joining the dark, but filling what is empty with laughter. And, in doing so, they’re mocking it, which must offer some sort of hope for the future.   

Support Seen & Unseen

Since Spring 2023, our readers have enjoyed over 1,500 articles. All for free. 
This is made possible through the generosity of our amazing community of supporters.

If you enjoy Seen & Unseen, would you consider making a gift towards our work?
 
Do so by joining Behind The Seen. Alongside other benefits, you’ll receive an extra fortnightly email from me sharing my reading and reflections on the ideas that are shaping our times.

Graham Tomlin
Editor-in-Chief