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.  

Explainer
Creed
Death & life
Monsters
Paganism
5 min read

Will the owner of ‘Halloween’ please come and collect it?

A mutant festival of saints, spirits, and supermarket costumes resists belonging to anyone
A witch, a priest and a druid stand in a store and look quizzically towards a halloween pumpkin
Nick Jones, Midjourney.ai

The trouble with modern Halloween is that it’s hard to say who it really belongs to. Our contemporary public holiday – 31 October, when people dress up as skeletons, light jack-o-lanterns, and go ‘trick-or-treating’ – has a few prospective owners.  

Perhaps Christians could claim it. The term “Halloween” is a shortening of ‘All Hallow’s Eve’, which is the day before All Saint’s Day (1 November) in the Church calendar.  

But this doesn’t fit with a few things. Don’t Christians dislike all that dressing up as evil spirits, and summoning up misrule and revelry? Instead, the case is made for a pagan ownership of Halloween: it was all due to a Celtic festival called Samhain (pronounced ‘sow-in’). This was a day for appeasing evil spirits, contacting the dead, and acts of mischief – all better fits for modern Halloween, surely? 

Sadly, we just don’t know enough about Samhain to say. We only have evidence about it from centuries after the Christian era, and in limited scraps like: “Samhain, when the summer goes to its rest”. It is unlikely the Christians invented this, to be sure – but none of the data tells us how it was celebrated.  

In fact, there is no evidence at all that All Saints Day was a churchy attempt to ‘take over’ a pre-existing pagan festival. From the get-go, Christians commemorated their dead on the basis that they were still alive in heaven, and able to bring prayers to God. A quick peek at the Book of Revelation (the final book of the Bible) gives a behind-the-curtain look: “and the smoke of the incense, with the prayers of the saints, rose before God from the hand of the angel”.  

Over time, it became more official which ‘holy ones’, or saints, should be honoured at which times. This was not about making dead Christians into gods, though. A famous theologian called St Augustine explains the proper view of the early Christians as they kept hold of bones and clothing from their dead: “We do not build temples, and ordain priests, rites, and sacrifices for these same martyrs; for they are not our gods, but their God is our God”.  

Gradually, a date was set to celebrate all those great men and women in heaven – from this came All Saints, or All Hallows Day. A tradition in northern Europe set this on the 1 November: “As a jewel worn on the brow sparkles time and again, so November at its beginning is resplendent with the praise given to all the saints” reports an English calendar from around 800AD.  

It is all well and good celebrating those who have made it to heaven. But what about the majority of Christians? Those who had died unrepentant and lukewarm – what on earth could be done for them? Here came another separate development: offering prayers and worship on behalf of those who had died as forgiven sinners, but who were still, if you like, serving their time for their bad choices.  

It gradually became the norm to tack that practice onto the pre-existing All Saints Day, so that the souls of regular Joes could have powerful heavenly intercessors close by. And so, All Souls Day became an established part of the Church’s year too, falling on 2 November.  

 

But here’s the twist. This season of ‘Hallowtide’ (All Saints and All Souls together) carried on for centuries, until England suddenly and violently abandoned it all in the sixteenth century. Seemingly overnight, the Reformations of the Tudor monarchs ended All Souls Day by scrapping all mention of a purgatory for the dead, and attempts to pray for them there. All Saints Day limped on in the new Established Religion as a remembrance of Christian exemplars – but they were not to be thought of as in radio contact from heaven anymore.  

Some people tried to carry on as usual, in illicit gatherings on hilltops, where they would burn straw, and gather to ask for help from great saints and pray for loved ones. But the majority followed the new religious settlement and tried to forge new communal rituals as best they could. The night still had a ‘supernatural’ afterglow thanks to centuries of the now-absent All Saints and All Souls. 

Then, in the nineteenth century, there was a comeback. Irish immigration to the USA and Great Britain plonked a fully formed Hallowtide into English-speaking culture again. It took like a duck to water. Perhaps this was to be expected. Here was a civilisation which had been rapidly deprived of its ordinary way of expressing connection to their deceased loved ones, as well as a sense of protection from heavenly guardians. They were clearly starving for some way to communicate feelings about ‘the beyond’, and to find hope in the darkening, colder days.  

‘Halloween’, really a modern döppleganger of All Hallow’s Eve, quickly became a popular national custom – a world custom, indeed, due to US influence. It took from Christianity that otherwordly atmosphere – but it did not jettison any of the customs that had arisen since the Reformation, and which were themselves continuations of folky responses to the coming of Winter; Samhain is almost certainly a part of that background here, even if it is not a direct connection, as we have seen. 

This Halloween mystery has a twist, then. Here is really a mutant of a festival that belongs to no one in particular - and that is the point. One could really call it one of modern pluralistic society’s great achievements. It has taken over management of this eerie season from the church, and arguably made a successful shared custom out of it. On the other hand, it is arguably consumeristic, tacky and frequently immoral: it was only a few years ago that supermarket costumes allowing people to dress as ‘mentally ill’ showcased this shallowness. 

So, as a Christian, I have some regrets that Christianity does not really ‘own’ modern Halloween, anymore. Because the original All Hallows, as well as All Souls, seem to me to be a historic high point of confidence about our human fate. Here was a whole civilisation that seemed to announce to itself, every November, that death, human wickedness, and the Devil, were not in charge here – those who had died in Christ were now more fully alive; that no one is so beyond hope that they are not worth praying for. The darkening nights and colder air must have seemed less daunting to them.  

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