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
Death & life
Digital
Easter
4 min read

Do you have a right to be remembered?

Our desire to be in control might not survive our demise.

Jack is a graduate of Peterhouse, University of Cambridge and Blackfriars, University of Oxford. He writes, and also works in local government.

A composite show a smiling woman next to a small illustrate of someone walking off into the distance.
Kristyna Squared.one on Unsplash .

“Madam, those that are about to die salute you.”  

Words attributed to Roman captives and criminals fated to die before the emperor, were used (ironically) by Councillor Kieron Mallon at the last Council meeting of this term of Oxfordshire County Council last week. ‘Madam’ was the Council’s Chair, wishing everyone well. Elections are on the way. 

Easter is also on the way, and in the period leading up to the commemoration of the resurrection of Christ from the dead, nearly 2,000 years ago, Christians are invited to think about their own mortality. ‘Remember that you are dust, and to dust you will return’ were words my priest intoned to me as he marked a cross with ashes on my forehead on 5 March, Ash Wednesday. 

Ash already emblemizes a belief in rebirth, even before the power of the story of the Christ’s resurrection is considered. I for one felt immensely hopeful on Ash Wednesday this year. Having just secured a new place to call home, and one year into my job as Democratic Services Officer to Oxfordshire County Council, looking after the likes of Councillor Mallon, life felt pretty swell. 

My priest and I spoke about the ways in which death and hope are joined at the hip. The ancient Greeks believed that a phoenix obtains new life by rising from the ashes of the one before it. So do we. I have found myself, so far this year, visiting people and places I strongly associate with former lives, from friends I lived with as an undergraduate to a town I went on holiday as a child to the beach where my late Granny’s ashes were scattered. ‘Ashes to ashes, dust to dust.’ 

More specifically, the Christian believes that ‘whoever loses their life for [Christ’s] sake will find it’, in the sense that true self-discovery arises when we let go of the ego, when we allow ourselves to be changed. Thinking about mortality, therefore, changes life, in so far as we are better equipped to surrender and salute the Saviour. That worldview has shaped public servants in years gone-by. 

An overwhelming majority of people in the course of human history have been forgotten.

I recently heard Dr Ian McGilchrist, the psychiatrist, describe the desire to control everything in life as the ‘besetting sin’ of the age in which we live. The desire to be remembered, rather than reborn, captures it better in my mind. Mankind has always wanted to remain in control. Souls will always be reluctant to surrender. However, what we have now is a world in which people feel uniquely entitled to make impact. 

People feel that they have a right to be remembered, but it is not so. An overwhelming majority of people in the course of human history have been forgotten. Moreover, the past can be especially compelling when we have a window into a world in which people did not necessarily expect to make any kind of worldly impact whatsoever. Theirs was a happier place. 

The twentieth century was described by Philip Rieff in 1966 in terms of the ‘Triumph of the Therapeutic’. He wrote, ‘Religious man was born to be saved’, but ‘psychological man is born to be pleased.’ ‘Psychological man may be going nowhere, but he aims to achieve a certain speed and certainty in going’. Therapy enables that objective. But therapy to what end? 

Counselling can be construed as a device to regain control. The counselled, if fixed, can go about trying to change the world, trying to make an impact, resuming the rather pleasing but never-ending mission to be remembered. For anyone of a religious sensibility, however, that is not the objective. Rather, new life is given only for the whole resurrection story in our own lives to be repeated. 

Around the time that Rieff wrote his book, the historian Herbert Butterfield, a Christian, wrote this. ‘Those who lived when the world was static – when the silhouette of the ploughman against the horizon hardly changed in the passage of a thousand years – may have something to teach us, who only know a breathless, rapidly changing world and who seem to be having to pluck what we can from life while running at full speed.’ 

Social media has surely exacerbated this condition because it connects us to others at the cost of contemplation about what life – and death – really entails. It is a place where we try to evidence to others the impact we are having, where we write our own eulogies and our own epitaphs and have access to the whole world whom we expect to read the same. 

Life changes to a much greater extent these days, in this place, than it did for the ploughman in the passage of a thousand years, or captives and criminals in the Roman world, including Jesus Christ who was identified as one such. However, if we can somehow create conditions to focus less on having impact in and on a volatile world, and being someone who ought to be remembered, we will find that we have more hope. 

In turn, we will change the world for the better, but despite ourselves, and for me that is what this period leading up to Easter is all about. We may find that others who are about to die salute us too, for the good deeds we have done that may well be forgot. 

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