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
Identity
Psychology
Work
5 min read

Even the office can be a place for self-discovery

What the office makes us feel about ourselves
A model of an office desk and shelves, at which a green plastic person sits leaning into the desk.
Igor Omilaev on Unsplash.

The realisation strikes me as I wrestle to fit my key into the lock on my office door: today I have no memory whatsoever of my journey into work. At my usual time I left the house and got in my car. I drove my usual route to my usual parking space and hopefully I stopped for all the red lights – but in truth I can’t remember any of them. Nor can I remember getting out of my car, locking my car (I hope I did that too) or walking from my parking space to this door, the lock of which is still failing to yield. This, I then realise, is because I am absent-mindedly trying to unlock it with my car key. Rolling my eyes, I reach into my pocket for the correct key… and it is not there.  

Now I’m awake, glancing at my watch; 50 minutes until my first meeting of the day (online). This is enough to drive home again, but not enough to drive home, collect my key, and return to this frustrating door. By now I have established that both coat pockets are empty, so I drop to my knees and start to rummage through my bag.  

It’s not a disaster if I do have to drive home, I can simply stay there and have a WFH day. I am fortunate, in my current job, to have the privilege of deciding this on a day-by-day basis. Many, I know, would love to work from home but do not have the option, but I prefer the office. The smell of black coffee, seagulls yakking on the roof. Doors open and close as colleagues come and go, keyboards tap, and on and off there is distant hum of student voices emanating from a classroom downstairs. In the hive of activity, I hum too, and I definitely get my work done more efficiently.      

I’m interested to analyse this phenomenon through the lens of place attachment. There is a considerable body of research that investigates the way people feel about the spaces that they inhabit – that certain places become meaningful places to be in. Place attachment theorists explore how we can have relationships to places in much the same way that we have relationships to people – feeling a strong pull to return to the familiar, disliking change, and feeling ‘homesick’ for places where we have a strong emotional attachment. Of course, this is usually discussed in relation to the natural world, or to one’s childhood home, or ancestral lands… but why not of the office? Because the heart of place attachment is not really how we feel about places, but how places make us feel about ourselves.  

Either for good or for bad, in the office one inhabits a certain sense of self – maybe not a different self to the one that we are at home – but at work, different aspects of that self are valued differently and are allowed to come to the fore. Perhaps I feel this especially because I am a working mum – it can be a relief to leave the home each day and come to inhabit a space where I am valued for more than my ability to know whether or not it’s PE today, or if there’s milk in the fridge. In the office, I can dwell in a version of myself that I enjoy – one that is paid to think and to write and to teach, a part of the university hum.  

George Pitcher, in his recent article for Seen & Unseen, challenges managers to ask themselves why they are opposing more junior staff working from home. His discussion hints at this same phenomenon of places shaping identities, and Pitcher proposes that managers might resent junior staff working from home, at least in part, because they feel like their identity as a manager is compromised when they cannot sit in their glass-walled office, gazing out over the rows of worker bees, queen of all they survey. As Pitcher puts it, “…if staff aren’t in the office, then what’s the point of being a boss?” 

The Bible too engages with the interplay between one’s sense of self and one’s sense of place. In the Old Testament, before the birth of Jesus, prophets and hymn writers spoke longingly of their homelands, and especially of the temple where they gathered to be assured of their identity as the people of God. “How shall we sing the Lord’s song in strange land?” cries one hymnwriter, exiled far from home, while another writes of how he longs to dwell in the House of the Lord all the days of his life. With this sentiment I can empathise; just as I feel like more of a worker-bee when I am within the hive of the university, I feel I am much more of a Christian when belting out hymns among the Sunday throng than I am among my colleagues at a Monday morning meeting. 

And yet the Bible issues a challenge to me here. Because after the Old Testament comes the New, written after the life, death and resurrection of Jesus Christ, and largely after the destruction of the great “Second Temple” that Herod the Great had built in Jerusalem. With the temple gone, and the region subdued under Roman overlords, the New Testament writers make frequent allusions to Christian believers themselves being temples – temples of the Holy Spirit. This means that, as a Christian, I am urged to think of myself as a “place” of God’s presence in the world – and not just for my own sake but for the sake of others. I am not just part of the hum; I change the hum by being in it. The challenge is to gently bring the notes of my Sunday morning hymn to my Monday morning meeting.  

A long time ago, when I was a little Brownie-Guide, we used to sing a campfire song called “Bees of Paradise.” It was very short and simple:  

Bees of paradise, do the work of Jesus Christ 

Do the work that no one can.  

As a child, I never understood the words, although I enjoyed the pretty little tune that we sang it to, in the round. It comes back to me now, as I rummage in my bag for a key that I know I’m not going to find, and I return to my childhood habit of pondering the lyrics. 

I’ve only got 40 minutes now until my first meeting of the day, it’s time to give up and drive home. Turning resignedly back down the stairs, I resolve to be no less a worker-bee at home than I would have been at the office today. And no less of a Christian either.  

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