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.  

Column
Character
Confession
Culture
Psychology
8 min read

‘Yet All Shall Be Forgot?’ Saying sorry has never been more difficult

Acknowledging wrongdoing is vital for any society to flourish. So why do we find it so difficult to apologise, especially online?

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

On a street, two men confront each other face to face.
Darwin Boaventura on Unsplash.

People in the UK don’t like to apologise. At least that’s what a recent poll reported by the Daily Mail claims. Of a thousand British people surveyed, about forty percent of them claimed they didn’t like to apologise because they were never wrong! At least that’s what the headline said. When you actually look at the survey itself, things get a bit more nuanced. 18 per cent don’t feel ‘comfortable’ making an apology. 15 per cent don’t like admitting they’re wrong. 23 per cent feel embarrassed at the thought of apologising. Sorry does indeed seem to be the hardest word. And Elton John seems to be the hardest person to avoid quoting whenever these things come up. Which they do - a lot! 

We shouldn’t really be that surprised by the findings of this study. Contrary to the popular belief that the world is divided between goodies and baddies, upstanding citizens and immoral rotters, the ethical picture is much more complex than that. The line between good and bad, as Russian dissident Aleksandr Solzhenitsyn noted, runs through people not between them. Many moral qualities like kindness, forgiveness, gratitude, humility and so on, are trait-like. There are relatively few pure saints and absolute villains, most of us linger in the muddy moral middle, neither exceptionally good nor reprehensibly evil. And this is what the survey indicates. Despite all our reservations about apologising, the average 20 to 50-year-old says sorry about three times a week, totting up an annual total of 150 apologies per year. We may not like apologising, but we get there in the end.  

Unfortunately, it’s not as simple as all that. Because while we may apologise, we don’t always mean it. If the need to apologise is a spectrum it not only includes those who NEVER apologise, but also those who ALWAYS apologise. If the non-apologisers sit at one extreme, the super-apologisers dwell at the other. These are the people who over-use apology, who never stop apologising for their existence. According to this survey, 41 per cent of us are first to apologise whether or not we think we are in the wrong, and 38 per cent apologise without meaning it. Ever found yourself inexplicably blurting out a sorry to the person who bumped into you at the supermarket? or gratuitously apologising for your emotions in an attempt to appease the workplace bully who caused them? I have. If that’s you, please pull up a chair and join me at the table of compulsive and unnecessary apologies- assuming you can sit down without apologising for taking up the air space. 

With the wisdom of age most of us will learn to let things lie. Which is to say we will learn to forgive. Which is also to say we will learn to accept apologies. 

It does seem, from this survey at least, that people are a bit confused about the nature of apology. ‘Sorry’, is a necessary part of the social vocabulary that makes community life possible. To say sorry is to acknowledge that we are embedded within a rich social network upon which we rely for our existence and without which human life would be untenable. It belongs alongside other basic words like ‘please’ and ‘thank you’, that recognise our social dependence. This applies everywhere: at home, at school, in the office, down the high street, at church. When we say Please, we acknowledge that there are things we cannot do and cannot know without the help of others. When we say Thank You, we accept that even our greatest achievements were team efforts, not wholly down to us. And when we say Sorry, we accept that this community of trust, this web of promises and fulfilments, is fragile. We can act in ways that fray or even break the threads that connect us to others. Sometimes we don’t show up when we said we would. Sometimes we lie to avoid shame. Sometimes we take far more than we should from those who can’t afford to give. Sometimes we are rude, hurtful, even hateful. Saying sorry is the way we recognise, renew and repair our damaged connections to the people on which our lives depend.  

One of the most interesting findings in forgiveness research is that as people get older they generally become more forgiving. Now we can all think of exceptions to this - we all know people who seem to have become bitter rather than better with age - but that’s not the rule of it. Most of us will mellow and become more tolerant as the years pass. Partly because the passing of time diminishes our energy for grudges and plotting petty retaliations. But mainly because the older we get the fewer friends we have left. If young adulthood is awash with weddings, then later life is filled with funerals. To put it bluntly, as we get older more people we know have died. We increasingly realise that our connections to family and friends are priceless and irreplaceable and hardly worth severing over minor grievances. With the wisdom of age most of us will learn to let things lie. Which is to say we will learn to forgive. Which is also to say we will learn to accept apologies. 

Why say sorry if there is no hope of social connectedness? This seems to be the zero-sum game played out in our digital lives. 

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This by contrast sheds some light on why it might be that some people (the maligned 40 per cent of the survey) simply do not apologise. Admittedly it is likely that the tendency to offer apology varies alongside other personality traits like Agreeableness- our general tendency to get along with people. Those high in Agreeableness are more sensitive to ruptures in their relationships and therefore more likely to resolve these with a well-timed apology. And given that women tend to score more highly than men in measures of agreeableness and social intelligence, it seems equally likely that the league of super-apologisers who say sorry too often (like me) is predominantly populated by women (unlike me). By contrast those who do not apologise are likely to be at the tough-minded end of the personality spectrum, more ferociously individualistic, less emotionally aware, and not particularly sensitive to the fabric of social life into which they are inescapably stitched.  

The apologiser and the non-apologiser then inhabit different universes. If apology belongs to a social network that needs to be tended, then the refusal to ever apologise is to deny the relational fabric of human life. Why say sorry if there is no hope of social connectedness? This seems to be the zero-sum game played out in our digital lives. Anyone can trawl the elephant’s graveyard of our online history and find things we said or did in our least thoughtful moments. And if they do, no amount of apology seems sufficient to rectify the mistake. Online apologies cannot erase online offences. It’s hard to imagine a better system for teaching us the futility of saying sorry. 

There‘s a timing issue too. Quite often people who do not like to apologise assume their apology will result in humiliation. If they admit to being wrong, they will be publicly shamed, not restored to connectedness but excommunicated. As a result, if they ever do get round to apologising, they do so reluctantly or halfheartedly or under duress or just way too late, and consequently receive exactly the kind of vicious reaction they assume apologies usually receive. It’s a self-fulfilling prophecy: if we believe our apologies will be met with hostility, we tend to apologise in ways that make hostility more likely. It’s no wonder some people don’t see saying sorry as a viable social strategy. 

To confess is to acknowledge and turn from our self-absorption, distraction, ignorance, inconsistency and whatever else detunes us from this heavenly wavelength. 

It is a pity, because for those who care to look apology can address the deepest needs of the human soul. Apology restores us to the human community, reweaves the threads of trust that connect us to family, friends, colleagues, and neighbours. It assumes there is an invisible world we can rely upon, in which we can place our faith, and to which saying sorry can restore us. This is not just the logic of social apology but also the logic of spiritual apology, or to use the more traditional term, confession.  

Just as we seem to be confused about apology, we are also pretty confused about confession. For many of us it belongs to movies where gangsters seek forgiveness for heinous acts through the screen of a confessional booth. Or even worse to the humiliation of being forced to publicly reveal our most shameful character flaws. But these are caricatures.  

Confession, like apology, ultimately belongs to a benevolent view of reality. A view suggesting that, at all times and in all places we are in the presence of an utterly attentive, absolutely constant and unfailingly loving God. A God who is closer to us than we are to ourselves. A God who cannot help doing whatever it takes to close the distance between us, whose gentle presence hugs the contours of our lives the way the sea hugs the shore. And this divine reality is so permanent, so consistent that, like white noise, we live in complete ignorance of it most of the time. We tend to think that we are here and God is elsewhere, but actually it is God who is here and we who are absentmindedly elsewhere.  

In this universe we don’t confess in the hope that our abject humiliation might possibly eke out a morsel of compassion from an otherwise indifferent deity. No. When we confess we acknowledge that while God may be unfailingly aligned with us we are less so with Him. We don’t seem capable of flying in formation with Him. If He moves in straight lines, our lines waver. To confess is to acknowledge and turn from our self-absorption, distraction, ignorance, inconsistency and whatever else detunes us from this heavenly wavelength. If apology restores us to a wider social reality than confession restores us to the deepest reality of all.