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
AI
Culture
Generosity
Psychology
Virtues
5 min read

AI will never codify the unruly instructions that make us human

The many exceptions to the rules are what make us human.
A desperate man wearing 18th century clothes holds candlesticks
Jean Valjean and the candlesticks, in Les Misérables.

On average, students with surnames beginning in the letters A-E get higher grades than those who come later in the alphabet. Good looking people get more favourable divorce settlements through the courts, and higher payouts for damages. Tall people are more likely to get promoted than their shorter colleagues, and judges give out harsher sentences just before lunch. It is clear that human judgement is problematically biased – sometimes with significant consequences. 

But imagine you were on the receiving end of such treatment, and wanted to appeal your overly harsh sentence, your unfair court settlement or your punitive essay grade: is Artificial Intelligence the answer? Is AI intelligent enough to review the evidence, consider the rules, ignore human vagaries, and issue an impartial, more sophisticated outcome?  

In many cases, the short answer is yes. Conveniently, AI can review 50 CVs, conduct 50 “chatbot” style interviews, and identify which candidates best fit the criteria for promotion. But is the short and convenient answer always what we want? In their recent publication, As If Human: Ethics and Artificial Intelligence, Nigel Shadbolt and Roger Hampson discuss research which shows that, if wrongly condemned to be shot by a military court but given one last appeal, most people would prefer to appeal in person to a human judge than have the facts of their case reviewed by an AI computer. Likewise, terminally ill patients indicate a preference for doctor’s opinions over computer calculations on when to withdraw life sustaining treatment, even though a computer has a higher predictive power to judge when someone’s life might be coming to an end. This preference may seem counterintuitive, but apparently the cold impartiality—and at times, the impenetrability—of machine logic might work for promotions, but fails to satisfy the desire for human dignity when it comes to matters of life and death.  

In addition, Shadbolt and Hampson make the point that AI is actually much less intelligent than many of us tend to think. An AI machine can be instructed to apply certain rules to decision making and can apply those rules even in quite complex situations, but the determination of those rules can only happen in one of two ways: either the rules must be invented or predetermined by whoever programmes the machine, or the rules must be observable to a “Large Language Model” AI when it scrapes the internet to observe common and typical aspects of human behaviour.  

The former option, deciding the rules in advance, is by no means straightforward. Humans abide by a complex web of intersecting ethical codes, often slipping seamlessly between utilitarianism (what achieves the most amount of good for the most amount of people?) virtue ethics (what makes me a good person?) and theological or deontological ideas (what does God or wider society expect me to do?) This complexity, as Shadbolt and Hampson observe, means that: 

“Contemporary intellectual discourse has not even the beginnings of an agreed universal basis for notions of good and evil, or right and wrong.”  

The solution might be option two – to ask AI to do a data scrape of human behaviour and use its superior processing power to determine if there actually is some sort of universal basis to our ethical codes, perhaps one that humanity hasn’t noticed yet. For example, you might instruct a large language model AI to find 1,000,000 instances of a particular pro-social act, such as generous giving, and from that to determine a universal set of rules for what counts as generosity. This is an experiment that has not yet been done, probably because it is unlikely to yield satisfactory results. After all, what is real generosity? Isn’t the truly generous person one who makes a generous gesture even when it is not socially appropriate to do so? The rule of real generosity is that it breaks the rules.  

Generosity is not the only human virtue which defies being codified – mercy falls at exactly the same hurdle. AI can never learn to be merciful, because showing mercy involves breaking a rule without having a different rule or sufficient cause to tell it to do so. Stealing is wrong, this is a rule we almost all learn from childhood. But in the famous opening to Les Misérables, Jean Valjean, a destitute convict, steals some silverware from Bishop Myriel who has provided him with hospitality. Valjean is soon caught by the police and faces a lifetime of imprisonment and forced labour for his crime. Yet the Bishop shows him mercy, falsely informing the police that the silverware was a gift and even adding two further candlesticks to the swag. Stealing is, objectively, still wrong, but the rule is temporarily suspended, or superseded, by the bishop’s wholly unruly act of mercy.   

Teaching his followers one day, Jesus stunned the crowd with a catalogue of unruly instructions. He said, “Give to everyone who asks of you,” and “Love your enemies” and “Do good to those who hate you.” The Gospel writers record that the crowd were amazed, astonished, even panicked! These were rules that challenged many assumptions about the “right” way to live – many of the social and religious “rules” of the day. And Jesus modelled this unruly way of life too – actively healing people on the designated day of rest, dining with social outcasts and having contact with those who had “unclean” illnesses such as leprosy. Overall, the message of Jesus was loud and clear, people matter more than rules.  

AI will never understand this, because to an AI people don’t actually exist, only rules exist. Rules can be programmed in manually or extracted from a data scrape, and one rule can be superseded by another rule, but beyond that a rule can never just be illogically or irrationally broken by a machine. Put more simply, AI can show us in a simplistic way what fairness ought to look like and can protect a judge from being punitive just because they are a bit hungry. There are many positive applications to the use of AI in overcoming humanity’s unconscious and illogical biases. But at the end of the day, only a human can look Jean Valjean in the eye and say, “Here, take these candlesticks too.”   

Celebrate our 2nd birthday!

Since Spring 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