4 min read

Behind the data: the social messages physician assisted suicide sends

Henna Cundill is a researcher with the Centre for Autism and Theology at the University of Aberdeen, and editor of the But… Bible Study Series for Young People.

If intense suffering caused by society drives autistic people to seek assisted death, then society has failed. Henna Cundill seeks the stories behind the data about such deaths.
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 4 per cent, but the prevalence of diagnosed autism in the Netherlands is only 1-2 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.  

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6 min read

For want of better words... the impact of the indescribable

Henna Cundill is a researcher with the Centre for Autism and Theology at the University of Aberdeen, and editor of the But… Bible Study Series for Young People.

Confronted with a question about belief, Henna Cundill found herself stumbling for words. She contemplates the link between our self-identity and what we can communicate.
A woman stops in her stride down a street and pensively runs her hand through her hair as she looks to the side.
Joseph Frank on Unsplash.

I recently got into conversation with a young man who asked me, “Do you believe in God?” When I replied, “Yes,” I almost regretted it, because his next move was to ask, “Why?” and I found this question troublingly difficult to answer.  

Of course, I could have dredged up the old philosophical arguments for the logical existence of God – but none of that would have really captured the thing I have no words for. Belief is like… Oh, what is it like? A glitch… no, a glimmer… no, like a glimpse of… No. Goodness. What is it? I’m lost for a word or even a metaphor that will somehow express what it feels to say “yes” and “I believe in God” and in that moment, even if only for a moment, to feel oneself transported or transposed out of this tiresome, human existence and into something that is... well, it’s something…  

I think it's fair to say that conversations about believing in God are unusual these days, especially when the circumstance is an 18-year-old lad talking with a woman in her late 30s – albeit the lad in question was a philosophy undergraduate and we were at Cumberland Lodge, where such conversations are welcomed amongst those of all faiths and none. Even so, it still felt rather unusual to be asked a question like that, not out of hostility but just casually over dinner, and to see him genuinely and respectfully interested to hear what I might have to say in response.  

Eventually I did come up with some kind of an answer; I can’t remember what. And naturally, I turned the question back on him. Turns out he did believe in God, in fact he was Jewish, so he stumbled out some kind of answer too, but I think it's fair to say that he was hardly more erudite than I was. Eventually, we both agreed that it was rather difficult to describe the indescribable, and our conversation turned to rather easier topics - the food, the weather, geopolitics... 


There is a loneliness to the feeling that there is a bit of ourselves that cannot be valued because it cannot be shared, and it is hard to recognise a part of our inner world as ‘real’ and valid if it cannot be communicated and affirmed. 

The question of believing in God was done with. Yet here I am weeks later, still pondering why it was so hard for me to articulate what it means to live with that belief, and why that part of the conversation ended, but still felt so unfinished.  

Has faith always been so indescribable? I suspect it rather has not. These dark evenings always tend to lure me to my bookshelves, seeking out my “comfort books” that I read and reread year after year. Mostly cosy fiction of course, but alongside those, a non-fiction favourite is Sheila Fletcher's, Victorian Girls: Lord Lyttleton’s Daughters. The book is a fascinating study of a family of young women in the Victorian era, faithfully compiled from their own real letters and diaries, so that the voices of Meriel, Lucy, Lavinia and May Lyttleton themselves can all be heard clearly on every page. I just love to read this book over and over again, entering into the hopes, sorrows, loves and ambitions of these young women – so similar and yet so different to my own.  

One thing that stands out particularly is how clearly and easily they each articulate their sense of faith. They were, of course, heavily schooled in Victorian public piety, but there is most certainly a real faith there too. A favourite passage of mine is an excerpt from the teenage diary of Lucy Lyttleton, recounting the day of her Confirmation. She speaks of a ‘nice and stilling’ drive to church, with her parents either side in the carriage, and then:  

I seem to remember nothing very distinctly till I went up and knelt on that altar step, feeling the strangest thrill as I did so… and I know how I waited breathlessly for my turn, with the longing for it to be safe done, half feeling that something might yet prevent it. 

Oh, to be so thrilled by a religious ritual, and to have both the words and the courage to write about it. After all Lucy, what if someone might be reading your diary 150 years later?  

In mainstream society nowadays, most of us simply don't talk about faith, religion, and what it all means to us personally in that way. It’s not the done thing in a (presumed) secular society. Consequently, it is now very hard to write about it too. Yet, many philosophers in the past century have observed a link between our self-identity and what we can communicate. For example, philosopher Charles Taylor describes how our sense of ‘self’ is formed in “webs of interlocution” wherein what we take to be “good” relies on what we can effectively talk about, and thus have affirmed by those we talk to. If we turn Taylor’s idea around, might we say that when there are parts of ourselves that we cannot talk about, parts for which we cannot find social recognition and affirmation, then we cease to value those parts of ourselves as good, or may cease to recognise them at all? 

 With that comes a sense of isolation. There is a loneliness to the feeling that there is a bit of ourselves that cannot be valued because it cannot be shared, and it is hard to recognise a part of our inner world as ‘real’ and valid if it cannot be communicated and affirmed.   

To me it feels that, as we talk about faith less and less, and as the language of faith becomes ever more confined, not even just to private conversations but to our own inner worlds, our “webs of interlocution” are beginning to shrink and disintegrate – until believing in God can feel more like dangling on a loose and solitary strand than being part of any kind of web. It’s a lonely place to be – there is a part of me that feels important, but no one can affirm it.  

And yet, by simply asking the question of each other, and being ready to listen respectfully to whatever answer was forthcoming, it seems that me and a teenage lad managed to connect two lonely strands together. It was of no consequence that we worship in different faith traditions, or that neither of us really found the words to say what we wanted to say – a conversation took place, and a certain web of interlocution started to form. For some, reading this, there may be a feeling of resonance, or a moment of understanding, and perhaps that too adds a little to the web, as different people’s words and thoughts and experiences begin to connect across different times and places.   

Webs do more than just create connection; webs capture things too. Perhaps, as this web spreads between different readers and thinkers and speakers, that’s what will happen to this question of believing in God. After a certain point, such a web may even become large enough and robust enough to finally start to capture some useful words, or an apt metaphor, that will really help me to say something about what it means to have faith. To be able to say it is to be able to share it, and in these lonely times, being able to say something is really not nothing.  

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