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.  

Essay
Culture
Doubt
Music
Psychology
9 min read

What happens when perfect plans are outsmarted by the world?

There may be delight hiding in the doom.
Two people sit and stand next to a grand piano on a stage.
Striking the wrong note.
Polyfilm.

If I’ve learned anything at all from decades working with businesses, it’s that they love an acronym. For a while the acronym we loved was VUCA. Not a nuclear jet nor a foot wart, VUCA emerged from the leadership theories of Warren Bennis and Burt Nanus to reflect the Volatility, Uncertainty, Complexity and Ambiguity of contemporary leadership. Nothing gets a roomful of executives nodding sagely than the observation that we live in a VUCA world. For a while it felt almost sacrilegious not to evoke VUCA at some point when training leaders. It was comforting to tell people who were supposed to be shaping the world that everything was, well… a bit nuts. 

But in the last few years VUCA has lost its shine. Things have started to get too crazy, a bit too VUCA for anyone’s liking. The wars, the plagues, the natural disasters, the political upheaval, the shaking of old certainties- it’s all gone a bit super-VUCA. The acronym that once reassured us that the world tends to resist our perfect plans has been outsmarted by the world it once captured. What are we to call this permacrisis, this omnishambles, this SNAFU, when super-mega-hyper-VUCA just sounds stupid? A new acronym was needed. Enter stage left- BANI, the invention of futurologist Jamias Cascio to designate the way things are now: Brittle, Anxious, Non-Linear, Incomprehensible. We’ve had a romantic breakup with the world- you’re not like it used to be, you used to be fun, you’ve changed!  

In March, Seen & Unseen celebrates its second anniversary. We are two years old. Old enough to appreciate a birthday cake, too young not to burn our fingers on the candles. I’ve been writing for the site since the beginning and to this day feel surprised that this quirky mishmash of a brainfart I keep writing is still accepted for publication each month. Either the folks at Seen& Unseen are pathologically kind to their own detriment, or my monthly missive of misery is not quite as off the wall as I fear it might be.  

When I look at the world, I feel like we’re in a football match with no referee. I keep shouting foul and looking for someone to blow the whistle. It feels like the Tower of Babel. Even the technologies we thought would unify us have made us incomprehensible to one another. Like the scene in That Hideous Strength (the third book in C.S. Lewis’ Cosmic Trilogy) where a roomful of people is magically befuddled. They can no longer understand each other, and anyone who rises to take charge of the situation speaks gibberish that only adds volume to the babble. We don’t need any more opinions. We certainly don’t need any more people with misplaced certainty they have the answer. 

To be honest, I’ve just run out of ideas. I’m confused, baffled, clueless. But what embarrasses me most is not my helplessness, it’s my hope. For some reason, in jarring contrast to the circumstances, I can’t shake off the sense that ultimately all this will make sense, that breakdowns lead to breakthroughs. We’re in the unbearable part of the story where everything goes wrong, but if we put the book down now, we’ll think that was the end of it, when it was really just the set up. Pretty much everything I’ve written for Seen & Unseen over the last two years equates to: grief, this looks bad, but maybe there is more to it than it appears. 

There is another anniversary being celebrated this year. This January marked the fiftieth year of a musical event so remarkable that a new dramatization of it premiered at the Berlin Film Festival to mark the occasion – the recording of The Köln Concert. (Watch the trailer of Köln 75.) If we are looking for a story of how beauty emerges from disaster, this one is worth telling. The event was organised by eighteen-year-old Vera Brandes, at that time the youngest concert promoter in Germany. She booked the Cologne Opera House, but given that it was a jazz concert, it was scheduled to begin at 11:30pm following an opera performance earlier that evening.  

The performer, jazz pianist, Keith Garrett travelled to the concert from Zurich. But rather than flying, he sold his ticket for cash and opted to make the 350-mile trip north with his producer Manfred Eicher in a Renault 4. He had not slept well for several nights and arrived late afternoon in pain, wearing a back brace, only to discover that the opera house had messed up. The Bösendorfer 290 Imperial concert grand piano he had requested had been replaced by a much smaller Bösendorfer baby grand the staff had found backstage. The piano was intended for rehearsals only, in poor condition, out of tune, with broken keys and pedals. It was unplayable. Jarrett tried it briefly and refused to perform. But Vera Brandes had sold 1,400 tickets for the evening. So, while he headed out to eat, she promised to get him the piano he required. 

But it was not to be. The piano tuner who arrived to fix the baby grand tells her a replacement is impossible. It was January in Northern Germany, the weather was wet and cold, and any grand piano transported in those conditions without specialist equipment would be damaged irreparably. They had to stick with the piano they had. Keith Jarrett’s meal didn’t go well either. There was a mix up at the restaurant and their food arrived late. They barely had chance to eat anything before returning to the venue. And when Garratt saw the tiny defective Bösendorfer still on the stage, he again refused to play, only changing his mind because Eicher’s sound-engineers were set up to record.  

So the concert begins. A reluctant pianist – tired, hungry and in pain – sits at a ruined piano, and records the bestselling piano solo album and bestselling jazz album. Ever. He improvises for over an hour. Starting tentatively, exploring the contours, befriending the limitations of his damaged instrument – learning its capabilities as he plays. But soon Jarrett is whooping, yelling and humming with delight as he extracts beauty from the brokenness. The limited register forces him to play differently. The disconnected pedals become percussion. By the time he reaches the encore, the joy of his playing is irrepressible – it sends shivers down the spine. And when he finishes, the applause goes on. Forever.  

Jarrett pulled off an impossible feat and sealed his reputation as one of the greatest pianists of his generation. And I take heart from the event, because when I face the world, I sometimes imagine I feel like he did facing that piano. Tired and pained and doubtful any good will come of playing. Can I order a new world, please? One more to my liking. One less likely to hurt. Yet I can’t quite shake off the intuition that there may be delight hiding in the doom, a treasure only unearthed by those willing to play. 

I am drawn to Job. He is a hero to all those who are sick of the answers of others but have no answers themselves. 

This year I celebrate my own anniversary. I was born seven months after that fateful night in Cologne, in the equally salubrious town of Birkenhead. This is my fiftieth year too. The 3:15pm of life: too early to clock off, too late to start anything new. If living is a race between maturity and senility – gaining the wisdom to live before losing our marbles – then I’m odds-on for a photo finish. The evidence accumulates daily that I am likely to live longer than most of my vocabulary.  

Jung held a positive view of old age. He viewed it as the time for religion to ripen. And I can’t help agreeing with him. The older I get the closer God seems. As muscle mass thins the spirit deepens. Outwardly I’m fading away, inwardly I am being renewed day by day. This undoubtedly underlies my hope of beauty arising from our brokenness. In some small and barely noticeable way it is already happening in me. And I know I’m not alone in that.  

Jung also wrote about Job- the Hebrew epic of suffering and restoration. Job’s life is like one of those old blues songs. He loses his wife, his kids, his home, his health. He’s left broken, infested with sores and sitting in the dust. If you’ve been in a situation like that, you’ll know that even the most well-meaning friends can respond with surprising incompetence. Job’s friends are no different. They are true believers in Just-World Theory, the universal human tendency to assume that if bad things happen to us we must deserve them, we must have been bad. They live in a world ultimately governed by the kind of instant karma that causes car crashes on YouTube, and they’re keen to teach Job the way the world really is.  

But Job resists them at every turn. He may have a proverbial reputation for patience, but he is anything but patient. I used to think this was a story about a man defending his innocence, but it’s much more than that. It’s the story of a man who goes through a breakup with God. He once lived a life of goodness, abundance, and gratitude in which he knew God as attentive and lovingly present. His friends are not just arguing that he’s being punished for some undisclosed sin, but that he’d always been wrong about God. He’d never known God- not really. The God they knew was volatile, capricious, arbitrary, vicious - like a rescue dog, you never quite knew when he would turn. And Job’s suffering was the proof of it. 

The problem for Job is that he has no clue why he is suffering, but he will not let his friends obliterate the history he has shared with heaven. He knows God to be utterly faithful, constantly present, sublimely attuned, hugging the contours of his life as the sea hugs the shore. He wants nothing to do with a fickle god who falls asleep on the job or flounces off the first time we let him down. He rejects the here-again gone-again god of his friends. Sometimes, to know God, we need to reject those who claim to speak for God.  

The weird thing in Job’s story is that eventually God shows up. Over the course of the narrative, he has asked God 122 questions, and God responds with 61 of his own. The questions are rhetorical- they point to all the places God is present that Job isn’t, all the things that God knows that Job doesn’t, all the things God has done that Job hasn’t. And by the end, Job is satisfied, his friends are dismissed, and his life is restored. God is as Job expected, intimately present but ultimately mysterious. He was right to reject the obtuse certainties of his friends and face the pain of the world with a cultivated sense of unknowing. 

When I ponder how best to bring beauty out of a BANI world, how best to play its brokenness like Jarret played his Bösendorfer, I am drawn to Job. He is a hero to all those who are sick of the answers of others but have no answers themselves. He is also a hero to those who, despite all evidence to the contrary, cannot smother their hope. Those who discern the leavening yeast sown in the hearts of humans across the planet; too inconspicuous to make the news, but destined to rise when the time is right.

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’re enjoying 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

Watch the Köln 75 trailer