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
Culture
Politics
Psychology
5 min read

To troll or be trolled?

Laughing at others conceals a terror of being laughed at ourselves.

Roger Bretherton is Associate Professor of Psychology, at the University of Lincoln. He is a UK accredited Clinical Psychologist.

Donald Trump gestures with his hands while someone holds a mic in front of him,

Politics and satire belong together, they deserve each other. Humour has been part of politics ever since the first jester dared jingle a bell in the face of a king. Those who get their kicks from bursting the bubbles of the pompous are drawn to the corridors of power like moths to a flame. But in recent weeks laughter has hit the headlines again. A couple of weeks ago, when Democratic presidential candidate Kamela Harris chose her running mate Tim Walz, the only thing most of us knew about him was that he was the one who had called Trump ‘weird’. A few minutes of furious googling later we knew much more, but the suspicion lingered that he had been picked for having finally answered the question that had plagued the Democrats for nearly a decade: how do you deal with Donald Trump? 

As a psychologist who works with leaders I have been asked this question numerous times. How do you go up against someone with the magnificent trolling skills of Trump? Is it possible to win against a person so adept at humiliating those who oppose him? And I think Walz is on to something. He hasn’t called Trump a threat to democracy or labelled his supporters a basket of deplorables. No. He has called Trump weird, and his supporters good dinner guests. Why is Trump weird? Because, says Walz, he has never seen him laugh. 

Trump is not the only one accused of being humourless. Our own former Prime Minister, Liz Truss, was equally unamused at becoming the butt of the joke, when a banner reading ‘I Crashed the Economy’ next to a googly eyed lettuce quietly descended behind her during an onstage interview. She left the stage abruptly and was quick to respond on X that what had happened was not funny. Most people thought it was funny and that she – like Trump – was slightly weird not to laugh it off, at least a little bit. As the political prankster Noël Godin once said: there is no better way to judge a person’s character than by how they behave when hit by a custard pie. 

We spend our lives subtly and unconsciously evading the slightest whiff of humiliation. 

There is however a deep psychology behind all this hilarity, or lack of it. For decades now psychologists have conducted numerous studies on the phenomenon of Gelotophobia. Not the fear of ice-cream, as one might initially think. Gelotophobes you’ll be pleased to know are perfectly capable of holding it together in the presence of a knickerbocker glory. What they fear is being laughed at, and as always this sounds infinitely more sophisticated translated into Greek (gelos/laughter, phobos/fear). Much of the gelotophobia literature is a heartbreaking tale of young people crippled by the fear that others will laugh at their weight, or their acne, or target them for bullying. Sticks and stones may break our bones, but mocking words it seems can leave us socially terrified for the remainder of our adult life. In its most debilitating forms gelotophobia is a cause for clinical intervention.  

But the study of gelotophobia goes further than treating the clinically distressed. Lurking among the samples and statistics is a wisdom that helps us understand why Trump and Truss are the people they are, and more importantly teaches us something about ourselves. Because most of us in some mild sub-clinical way are gelotophobes. We spend our lives subtly and unconsciously evading the slightest whiff of humiliation.  Margaret Atwood was no doubt right to say that men are afraid that women will laugh at them, and women are afraid that men will kill them. But many people would rather die than be laughed at. 

Could it be that our love of laughing at others conceals a terror of being laughed at ourselves? 

One of the primary findings about gelotophobia, is that those who are most scared of being laughed at are also scared to laugh. To say of Trump or Truss that they lack humour is equally to say that the last thing on earth they want is to be the object of laughter. Most gelotophobes were once victimised, ostracised or bullied, and humour was the chief instrument of their humiliation. They were forged by the cruel conditioning of mockery. As a result, they view laughter-eliciting situations negatively. In facial coding studies they show less joy and more contempt when presented with smiling joyful people. The inner freedom to join others in laughter has been quashed by the suspicion that the laughter of others is a threat. Some compensate for this by making sure they always have the upper-hand, always the troll never the trolled. Which speaks to another finding, more applicable to Trump than to Truss, that derisive humour is the way narcissists conceal their vulnerability. Behind every grandiose expression of superiority, lies a shame and inferiority that can be defended by attacking others. 

Gelotophobia ultimately is a subtype of our fear of being disliked, and if the bestseller lists are anything to go by, this is clearly a pressing concern for many people. Fumitake Koga and Ichiro Kishmi brought the wisdom of Japan to the question in The Courage to be Disliked, and Ryan Holiday did the same from a Stoic perspective in Courage is Calling. How to live in a world that shapes us through the threat of ridicule has been pondered for thousands of years. It even turns up in the New Testament of the Bible. When the disciples of Jesus stepped out to deliver their first public discourses, they were accused of being drunk, stupid and presumptuous. The word used to describe them in the historical sources is parrēsia, usually translated bold, but perhaps more accurately rendered the freedom to say anything (pas- all; rheō- to utter). For them freedom of speech was not a societal given but a virtue they enacted in spite of their society. 

In the ancient world the term parrēsia was more often used to describe the counter-cultural courage of the Stoic philosophers. But the disciples were not Stoics. They weren’t schooled in the rigours of Greek philosophy, but rather apprenticed to the Hebrew prophetic tradition. A tradition which equally appreciated the inevitable opprobrium befalling those who presume to critique and rejuvenate a stale culture. They were simply following the teaching of the master who pointed to ridicule, scorn and gossip not as PR disasters to be managed, but as prophetic honours to be celebrated. Or, as Marty Babcock once claimed, ‘Jesus promised his disciples only three things: they would be absurdly happy, entirely fearless, and always in trouble.’  

We should be cautious then laughing too much at the embarrassments that befall our political class, and perhaps more attentive to what our schadenfreude might point to within us. Could it be that our love of laughing at others conceals a terror of being laughed at ourselves? Even worse, what if vindictively celebrating their misfortunes is itself a symptom of the inner helplessness, inertia and unfreedom we claim to oppose? Or, to give the same question a more positive inflection: what would we be doing or saying differently if we were genuinely and entirely free of the fear of being ridiculed?  

Blessed are those who do not fear the laughter of others for they may change the world.