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.

Henna Cundill

Henna is a researcher with the Centre for Autism and Theology at the University of Aberdeen.

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.

Review

Comment

Culture

Death & life

14 August 2023

5 min read

'Do you guys ever think about dying...?' - Barbie

Pat Allerton reflects on the Barbie movie, the societal questions that it answers and the existential question that it doesn't.

Pat Allerton

Pat is vicar of St Peter’s Notting Hill and author of A Pocketful of Hope.

Margot Robbie as Barbie in Greta Gerwig's Box-Office smash hit movie

So I’ve just got home from watching the brand new and much acclaimed ‘Barbie’ at the cinema (don’t worry, I also watched ‘Oppenheimer’ last week). It’s 11pm, my wife and our 8.5 month old daughter are asleep upstairs and despite having church in the morning, I feel stirred to write some thoughts.

First and foremost, huge congratulations to Margot Robbie, Ryan Gosling, the whole cast, crew and team. It’s an absolute belter! Full of laughs from beginning to end. I thoroughly enjoyed myself and would encourage anyone else to go and see it.

But secondly, far from being the shallow, plastic cliché that you might expect, what you actually get is an intelligent, searing critique, albeit somehow gently done, of the world we live in and what’s predominantly wrong with it. Which is, you guessed it, men. Or more specifically, patriarchy.

The film begins in ‘Barbieland’ where everything is seemingly perfect, as encapsulated by Barbie when she describes the day we first meet her as, ‘the best day ever. So was yesterday, and so is tomorrow, and every day from now until forever.’ That is, until we meet Ken (played by the excellent Gosling). It is here that the first inkling of imperfection or wrinkle in their world is detected. As the narrator (voiced by Dame Helen Mirren) makes clear, ‘Barbie has a great day every day, but Ken only has a great day if Barbie looks at him.’ (We’ve all been there guys). His niggling insecurity and consequent competitiveness towards other Kens however, still aren’t enough to wake Barbie from her dream-like state and reveal that all is not well in paradise.

Issues of equality, respect, independence and identity are addressed in a way that left this 'pale, stale male' challenged but not condemned.

That moment arrives unexpectedly, during what appears to be a standard evening with ‘a giant blowout party with all the Barbies, and planned choreography and a bespoke song’ to which Ken is told he should ‘stop by’. The dance is breathtaking, the happiness palpable, and yet suddenly, as if from nowhere, Barbie blurts out the pivotal line in the film, the hinge on which the whole (Barbie) world turns, ‘do you guys ever think about dying?’ Cue the DJ’s vinyl record screeching to a halt, the choreography closing down, the dancers looking at her in disbelief, and the general sense of a serious buzz-kill. ‘Dying to dance’, she disingenuously adds, desperate to keep the party going, to shrieks of relieved delight and Dua-Lipa's return. Disaster averted, reality restored.

Except it’s not, it’s simply avoided. Avoided by everyone that is, bar Barbie. Something has changed for her, she knows it, and she must somehow find out why. That wrinkle in her world (along with the wrinkle on her thigh) turns out to be caused by a tear in the fabric separating her plastic world from the real one.

Long-story short, avoiding spoilers where I can, Barbie and Ken then embark on an eye-opening, perspective-shattering, journey from their world to the real world in order to find out where such unnerving questions (and cellulite) were coming from. Major issues with (or norms within) our world are encountered, from the objectification of women (Barbie receives immediate unwanted attention from all kinds of men), to the totally unmerited respect of any man (with someone even asking Ken if he had ‘the time’). They each go on an existential journey of discovery, with Ken delighted to learn that in the real world, men rule the roost (except for a brief time when he thought that horses did). Inspired with fresh vision, he quickly returns home in order to make some fundamental changes to and establish much of the best practice that he’s witnessed in patriarchal L.A.

I won’t say how things end up, but suffice it to say, issues of equality, respect, independence and identity are addressed in a way that left this ‘pale, stale male’ feeling both challenged but not condemned. Kudos to the team for getting that balance right! However, as big and important as these issues are, and as satisfying an ending as was reached from a social justice warrior’s point-of-view, it struck me that the biggest elephant of all was still left there in the room, or at least charging around on the beach. Because the very question that began her journey, the deepest one that woke her up, is the very one that’s just left hanging, unaddressed and ungrappled with.

The music stops and that is it. And yet don't our hearts long for more?

It’s almost as if that moment of existential angst on the dancefloor (and who hasn’t had one of them), realising the fragility of our own mortality, did nothing more than focus Barbie on the need to lay hold of everything she can in this life, rather than exploring the reality (or not) of the next. Our culture has a word for it. YOLO, if you didn’t know, standing for ‘you only live once’. Which of course is true, whether you’ve got faith or not. But the Christian worldview would go further, saying that whilst indeed you only live once, the Scriptures tell us that you also live forever (or YALF, to coin a phrase). Which sounds ridiculous on the face of it (the concept, not the phrase, although granted, YALF might not catch on). After all, as the creator of Barbie, Ruth Handler, tells us in the film, ‘ideas live forever, humans not so much.’

Unless, of course, they do, or can, which only our creator could possibly make possible. And so Ruth’s appearance raises another interesting question, if she made Barbie, who made Ruth? Only when we’re dealing with questions of this nature can we be positioned to take on the big mama (I was tempted to say ‘daddy’) question of, ‘do you guys ever think about dying?’ Which, of course, every one of us does. You can’t be human and avoid doing so. You’d have to be a doll in a made-up world.

But it’s a frightening thing to do, whether in Barbieland, in England’s green and pleasant land or anywhere for that matter. Because it all just looks so final. Like the music stops and that is it. And yet don’t our hearts long for there to be more? For one more song, for the beat to continue? Dare we hope for resurrection where life and light beat death and darkness? Because as beautiful as this life is, with all its opportunity for growth and freedom, be it in self-revelation and actualisation like Ken (the film ends with him wearing a hoodie that says, ‘I am Kenough’), or greater progress and equality on a socio-political level, experience tells us that until we have an answer for Barbie’s first and biggest question, then our own days here on earth, however good, happy and choreographed, will always be rudely interrupted by the reality of death and its long shadow. Find an answer for that... and let the DJ’s music play.