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
Psychology
4 min read

Worry: bug or feature of our lives?

The ancient root of common or garden worrying.

Andy is a vicar-in-training in Durham.

A woman rubs her face in worry, while siting at a screen.
Vasilis Caravitis on Unsplash.

Climate change, smartphones, a loss of social cohesion: these are just some of the potential culprits for an oft-discussed, much worried about, anxiety epidemic. But what if our worries can’t be fully explained by any particular feature of the modern age? What if worry is in fact an ancient problem that afflicted the first  century no less than the twenty-first? What would that mean for how we should respond?

I’m not a psychologist, or a social scientist, but I am a common or garden worrier. And worry worms its way into my life through the gap between responsibility and control. 

I first encountered this at work. As someone who organised events, I felt responsible (and would be held responsible) for how many people signed up. But I soon came to the painful realisation that I didn’t control how many people signed up. I had responsibility but not control - and worry wormed its way in through that gap. And that didn’t seem fair to me - it seemed like a “bug” that should be fixed. Maybe my bosses just needed to relax a bit. That way my responsibility would shrink to match my control. Or maybe I needed better comms, better marketing - some way of making sure people came.  That way my control would expand to match my responsibility. Either way, the gap between responsibility and control should be eliminated somehow.

And then I had kids - three of them. As a dad I am responsible for my children. But I am not in control of them - sometimes I can barely get them to eat their tea. And so worry worms its way in - through that gap between responsibility and control. But I began to realise that when it comes to my kids, I just can’t close the gap and I shouldn’t even try. To abdicate responsibility or to seek control are just two different flavours of failure. The gap between them isn’t a bug in the code of life, it’s a feature. It’s part of being human, and so human flourishing means learning to live well with, even in, that gap. But how?

In the earliest record we have of Christians trying to explain themselves, a book of the Bible called (confusingly) Acts, we follow Paul, convert to Christianity, to Athens, the cultural capital of the ancient world. And there he meets people different from us in almost every way… except that like us they are worriers. And they are worried because they feel responsible for something they can’t control. Paul finds an altar with this inscription “to an unknown god”. What makes people erect an altar to an unknown god? The worry that worms its way in between responsibility and control. We’re not sure if we know about all the gods - we’re not in control. But that god we don’t know about might hold us responsible. So let’s try to close the gap by erecting an altar to a god we don’t even know.

Paul offers a better solution - to them and to us. He’s invited to give a speech to the leaders figures of Athens, but he doesn’t present his audience with a more sophisticated technique for closing the gap between responsibility and control. Rather, he introduces them to his God, to the truth that allows us to flourish in that gap. This God, Paul says, marks out the appointed times and places of all people: that is, he is in control of all things. This God, Paul says, wants everyone to seek him and find him: that is, he wants the best for all people. This God, Paul says, doesn’t need anything from us: that is, our responsibility is his invitation to be part of what he’s doing in the world. Know this God, trust this God, Paul says, and you can see the gap between responsibility and control as a feature of life and not a bug. You can flourish in and not worry about the gap.

But how does that work in the midst of tea-time tantrums and the day-to-day worries of life? Well for me, on a good day, it works a bit like this. When I’m confronted with the reality of quite how much is beyond my control, I’m not faced with chaos. I’m just faced with the fact that I’m not God, but God is - and nothing is beyond his control. And the God who is in control when I’m not loves my kids more than I do, better than I do. And he doesn’t need me. He’s not delegated responsibility for my kids to me because he’s too busy to look after them himself. I’ve been given the responsibility of being their dad so I get to share in the joy of watching them grow into all they were made to be. The gap is still there - I’m really responsible and I’m really not in control. But maybe I’m ok with that.

There may well be certain features of the modern age that heighten our anxiety. But the people of first century Athens didn’t have smartphones or face climate change and they still worried. Because they felt responsible for something they didn’t control, just like we do. It’s an ancient problem, a feature not just of our culture, but of being human. And what if an ancient problem needs an ancient solution?

Celebrate our 2nd birthday!

Since March 2023, our readers have enjoyed over 1,000 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