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
Character
Culture
Idolatry
Psychology
6 min read

We need a sense of shame - but need mercy even more

Shame may be necessary, but only if it can be defeated

Belle is the staff writer at Seen & Unseen and co-host of its Re-enchanting podcast.

Frankstein stares our from his covered face.
Jacob Elordi plays Frankenstein's monster
Netflix.

I’ve been thinking about the nature of shame a lot recently. Both professionally and personally, it’s a topic that is demanding my attention. It’s following me around, insisting that I look it in the eye, shoving and nudging me – taunting and tempting me to finally snap and wrestle it to the ground. I guess that is the very nature of shame, isn’t it? It’s always so stubbornly there.  

I’ve also noticed that it seems to have elbowed its way into cultural conversations; it’s been putting a real PR shift in, seeking rehabilitation in public discourse.  

The actor, Jacob Elordi, was recently interviewed by the Wall Street Journal. Kind of interesting, kind of not. The sliver of it that really caught my attention was when the interviewer asked Jacob,  

‘What’s one lost art that you wish would come back in style?’  

To which Elordi replied,  

‘The art of shame. I wish people could experience shame a little heavier’.  

Gosh.  

It makes sense that this was Jacob’s answer; the interview was conducted to promote Frankenstein, Guillermo Del Toro’s new movie in which Jacob Elordi plays Frankenstein’s monster. So, I get it. He’s been consumed with what components make up a monster, endeavouring to literally turn himself into one. He’s been ruminating on the recipe of evil, and perhaps he’s found one key ingredient – shamelessness. Maybe Jacob, having dwelt on such, has subsequently looked out at the not-so-fictional ‘monsters’ wreaking havoc and has diagnosed the same thing, a distinct lack of shame.  

It's a solid thesis.  

It reminded me of another recent interview, this one with the acclaimed author, Zadie Smith. She said,  

‘Shame gets a bad rap these days. I think it’s quite a useful emotion, corrective on certain kinds of behaviour… I assume people – including myself – are just deeply, deeply flawed. And so, shame is usually quite appropriate on a day-to-day level… shame is a kind of productive thing to create change. I guess I do believe that. I know it’s definitely a Christian emotion, that’s why it’s so out of fashion. But I always thought it quite productive in the gospels, that idea that you assume that you are entirely in sin. I always assume that.’  

I half agree with both Jacob and Zadie. In a way, I’d be a fool not to. Not to mention, proof of their thesis. 

I cannot deny that I am, as Zadie points out, deeply, deeply flawed. There is a crack in everything I do, a fracture in all my best intentions. And yours, too, I’m afraid (but I have a feeling you know that). There is a brokenness to us, a breaking-things-ness. To each and every one of us, ‘hurt’ is both an adjective and a verb – something we feel and something we do. The things I want to do, I never manage. The things I don’t want to do, I seem to manage every day. I am falling short, missing the mark – I am so fallibly human.  

To acknowledge such is not only obvious, nor is it simply ‘useful’, as Zadie suggests. It’s inherently spiritual, it’s paradigmatic. 

Last summer, I hosted an event at which Francis Spufford, one of my most cherished wordsmiths, playfully quipped, ‘I’ve heard original sin (the notion that we are, as Zadie notes ‘entirely in sin’) described as one of the few theological propositions which you can actually confirm with the naked eye’. ‘Sin’, Tyler Staton similarly writes, ‘is simultaneously the most controversial idea in Christianity and the one most universally agreed upon’.  

There’s something deeply wrong with the world. We all know that.  

Which, presumably, is what Jacob Elordi is getting at – he’s observing bad people not feeling bad enough about the bad that they do, or worse still, the bad that they are. A healthy dose of shame is the medicine that this world needs, he suggests. 

Oh Jacob, I sympathise with that. The thing is, I have a hunch that the presence of shame makes as many monsters as the absence of it.  

And Zadie, I wonder if shame births as much destruction as it does ‘correction’.  

While I agree with you both that, in a world as broken as ours, shame needs to exist in some form or another, it also needs an antidote. It’s a dangerous substance; toxic and destructive. Don’t let it fool you, don’t be over-generous to it – shame may (in its most moderate and appropriate forms) be an acknowledgment of the disease, but it is not the medicine. It could only ever be ‘useful’ if it is, ultimately, defeatable.  

At least, that’s my – admittedly very Christian – conviction. That’s my take. I can’t pretend that it’s not as theological as it is sociological in its underpinnings. 

I’m relatively new to the liturgical aspects of my own faith tradition (that is, the formalised scripts, actions and rituals that have long fuelled religious experience) , so I have the pleasure of not being numb to them. When I read the ancient words of ancient prayers, they shoot right through me, particularly these ones:  

‘Almighty God, our heavenly Father, we have sinned against you and against our neighbour in thought and word and deed, through negligence, through weakness, through our own deliberate fault...’ 

Ouch.  

As I read those words, week in and week out, my brain creates a helpful montage for me – whirring through the countless ways in which I have failed – in what I think, what I say, what I do. I’m confronted with the ways that my breaking-things-ness has leaked out of me through my negligence, it’s spilled out of my weakness, the force of it directed at others through my own deliberate fault.  

Oh yes, I’m well acquainted with the emotion of shame.  

But the only thing productive/appropriate/corrective about falling on my face in shame, is that there is a mercy that can scoop me up. It’s not hopeless, you see? There’s a mend-ability. There’s an antidote to shame; there’s a balm for its burn. There’s a bewildering love that banishes shame from within me – there’s a rescue route from its toxic spiral.  

The moment that shame is acknowledged, its presence verbalised, its power felt – is the very moment it needs to be neutralised. It cannot fester, it cannot be afforded the loudest, nor the last, say.  

And so, to Jacob Elordi’s interesting wish – that ‘people could experience shame a little heavier’, and to Zadie Smith’s fascinating thesis that ‘shame is a kind of productive thing to create change’- I hear you. I see what you’re getting at. But I can only ever wish people to experience the heaviness of shame if it means that they are more sensitive to the feeling of it being undeservedly lifted off them. That’s where change happens. That’s the medicine.  

So, Jacob and Zadie, let’s agree to half-agree on this one, shall we?  

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