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.  

Review
Culture
Death & life
5 min read

How the Victorians could help us to die well

Victorians welcomed the angel of death, rather than fearing it. Ian Bradley explores their changing attitudes towards death. Part of the How to Die Well series.

Ian Bradley is Emeritus Professor of Cultural and Spiritual History at the University of St Andrews.

A bronze statue of a resting angel sits atop a low stone grave.
A grave in a Dresden cemetery.
Veit Hammer on Unsplash.

When it comes to dying well, there is much that we can learn from our Victorian forebears. Experiencing death more frequently and directly than most of us do, they were not frightened by it but regarded it rather as part of the natural order and, thanks to the pervasive influence of the Christian faith, as the gateway to eternal life.  

In his widely read epic poem, ‘In Memoriam’, inspired by the death of his close friend Arthur Hallam at the age of 22 and published in 1851, Alfred Tennyson posed the rhetorical question: ‘How fares it with the happy dead?’. It struck a deep chord with his readers, as did his answer that they are ‘the breathers of an ampler day for ever nobler ends’. 

The Victorians thought, wrote, preached, and sang about death and what follows it far more than we do today. Novels were judged by the power and pathos of their death bed scenes. Ninety hymns in the 1889 edition of Hymns Ancient and Modern deal primarily with the experience of death and dying. By contrast, there is not a single hymn on this subject in its current successor, the 2013 Ancient & Modern: Hymns and Songs for Refreshing Worship. Death and heaven featured prominently in popular poems, none more so than those by Adelaide Procter, a devout Catholic and the second most read Victorian poet after Tennyson. For her, ‘the beautiful angel, Death, waiting at the portals of the skies’ is to be welcomed rather than dreaded. Her verses about a ‘lost chord’ that an organist realises he may only hear again in heaven, set to music by Arthur Sullivan, who also had no fear of death, became the best-selling song in Britain throughout the last quarter of the nineteenth century.  

To our modern taste, such sentiments may seem maudlin and morbid. We have done our best to sweep death under the carpet and we think little about what may follow it.  

For most Victorian Christians death was something to be looked forward to rather than dreaded. Frederick William Faber, who converted from Anglicanism to Roman Catholicism, was typical in his enthusiastic evocation of its joyful and liberating character: 

O grave and pleasant cheer of death! How it softens our hearts and without pain kills the spirit of the world within our hearts! It draws us towards God, filling us with strength and banishing our fears, and sanctifying us by the pathos of its sweetness. When we are weary and hemmed in by life, close and hot and crowded, when we are in strife and self-dissatisfied, we have only to look out in our imagination over wood and hill, and sunny earth and starlit mountains, and the broad seas whose blue waters are jewelled with bright islands, and rest ourselves on the sweet thought of the diligent, ubiquitous benignity of death.  

To our modern taste, such sentiments may seem maudlin and morbid. We have done our best to sweep death under the carpet and we think little about what may follow it.  For the Victorians, by contrast, it was an ever-present reality, mostly happening at home rather than out of sight in a curtained-off hospital bed or care home, and directly affecting the young as well as the old. The average life expectancy of someone born in Britain in 1837, the year of Victoria’s accession, was just 39 years, less than half the current figure of 81. Infant mortality stood at 150 per 1,000 births and actually rose through the century, reaching 160 per 1,000 births in 1899 – the current level is just over three per 1,000.   

It was in this context that Victorian clergy sought to dispel anxious fears about death and help people to die well by expounding the Christian doctrine of eternal life. There was a pastoral imperative to do so when seeking to minister to so many who were dying or grieving.  

Their focus was on the promise of heaven rather than the fear of hell. There was still a continuing adherence within the churches to the doctrine of eternal punishment for the wicked in the aftermath of a final and terrible Day of Judgment. However, the latter half of the nineteenth century saw a marked decline of belief in hell, prompted partly by the impact of the new German school of biblical criticism which challenged Biblical literalism and by moral revulsion at the idea that a basically benevolent and good God could consign people who had not led particularly bad lives to eternal torment.  

Increasing missionary endeavour and contact with those of other faiths, or of no faith, also made many Christians uneasy with the idea that a large proportion of the human race were condemned to everlasting punishment simply because they had never encountered the Christian Gospel.  

As fear of hell subsided, so hope of heaven came to occupy a much more prominent place in Victorian thought and imagination. This can be clearly seen in the language of hymns. Heaven receives over 100 explicit mentions in the seminal 1889 edition of Hymns Ancient and Modern, and there are a further 43 references to Paradise. Hell is mentioned in just 15 of the 638 hymns and only in four of those is it conceived of primarily as a place of pain and punishment. 

Hymns are, indeed, a good place to gain an insight into Victorian views of death and heaven. Two popular ones written at the very beginning of Victoria’s reign set the tone for those that followed. ‘I’m but a stranger here, heaven is my home’ by Thomas Taylor, a Bradford Congregational minister, and ‘There is a happy land, far, far away’ by Edinburgh schoolmaster Andrew Young, emphasize the idea of death as a home-coming and reinforce the conviction, increasingly common among Victorian clergy, that friends and family will be reunited in heaven.  

As mortality rates rise in the wake of Covid and as a consequence of an ever-older population and death comes out of the closet, we are at last beginning to talk and think about it more. Through their poems and hymns, the Victorians can help us to be less fearful and to die well. 

 

Ian's new book Breathers of an Ampler Day: Victorian Views of Heaven is published by Sacristy Press.