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.

Henna Cundill

Henna is a researcher with the Centre for Autism and Theology at the University of Aberdeen.

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

Psychology

28 July 2023

4 min read

The selfish desire of hopeful prayer

While waiting for a bus, Henna Cundill contemplates how prayer transforms the uncomfortable into imaginative hope.

Henna Cundill

Henna is a researcher with the Centre for Autism and Theology at the University of Aberdeen.

A woman leans against the glass of a bus shelter while waiting, she clasps a bag.

“Try praying” suggests the bus as it pulls up. Ironic, really, given how much of my life I’ve spent in this draughty shelter, earnestly praying that a late bus would just turn up. Well, here is a bus, but it is not the one I’m waiting for. However, its slogan has lodged in my mind. Perhaps I should pray anyway, just to pass the time? What would I pray for right now, beyond the bus I want? Are any of my other prayer requests something that God is likely to countenance? I’m all too well aware that there are some things on my personal wish-list that the Almighty is definitely not going to grant.

In 2022 a Church of England survey found that nearly half the population (48 per cent) claims to pray, and the numbers are apparently even higher among the 18-24 age bracket. In the breakdown of the statistics, it can be seen that the poll respondents prayed for all the ‘right’ things – for peace, forgiveness, guidance, and for those in need. So far, so pious. Would any of us really admit to a pollster that we pray for the other, slightly more selfish things – a convenient parking space, good weather on a holiday? Such prayers are suitably benign, but probably also pointless. God, surely, has better things to do. We still pray them though. Well, I do anyway. Maybe you are better than me, but I’ll go ahead and admit to all those little, probably pointless prayers – prayers revealing that inwardly I’m quite selfish, and a bit of a narcissist, a girl who just wants an easy life and an on-time bus.

Perhaps the uncomfortable truth here is that a lot of prayer is born out of a desire for ease and comfort. Prayers for peace, forgiveness, guidance, and even prayers for others in need can be no less a response to a sense of discomfort or discontent than the prayers to get me out of this draughty bus shelter. But such desires are entirely natural. After all, as humans we are programmed to maintain homeostasis. Within that, most functions can happen internally – so when the individual body is too hot, it sweats; when the body is too cold, it shivers (like me in this shelter right now). It’s all about control.

But sometimes the discomforts are emotional, and we are dependent on external factors to maintain or regain our homeostatic sense of peace – factors that are out of our (or any person’s) control. To pray is to make a cognitive response to that realisation, to seek some input from a higher power. There is nothing I can do to make the bus come on time, and in the absence of peace, forgiveness, guidance, or when contemplating the multifarious sicknesses and struggles of my fellow human beings – well, I realise that maybe damn near everything is out of my control. God, can you do something about this? It’s making me uncomfortable.

Oddly enough, even the most well-known of Christian prayers, the so-called “Lord’s Prayer” (Our Father, who art in Heaven… etc. etc.) makes no bones about acknowledging this. Part way through, like hungry children who loiter in the kitchen whilst mother is cooking dinner, unashamed the pray-ers cry out: “Give us this day our daily bread.” It is a daily moment of divinely sanctioned gimme, gimme, gimme. My selfish inner narcissist loves that bit.

I’m not generally praying for bread; I have bread. But to me the bread is a metaphor for all my inner needs and appetites. I think one of the early Christian writers, Augustine of Hippo, grasped this uncomfortable truth also. Reflecting on the brutal honesty of the prayers which are found in the Bible’s Book of Psalms, he wrote: “Your desire is your prayer, your prayer is your desire.” Augustine was not advocating that such desires should be uncritically indulged, but that pray-ers should be honest enough to verbalise their desires, to acknowledge them before God, and in that way allow sunshine to become the best disinfectant.

There is, perhaps, no bleaker statement than the words, “I haven’t got a prayer.” Where there is prayer, there is imagination, and imagination is a sign of hope.

How interesting that the Lord’s Prayer acknowledges this basic human need – this need to say, “God, life is uncomfortable, and I don’t like this feeling.” I wonder about the other 52 per cent of the poll respondents, the ones who said that they didn’t pray. What on earth do they do with their appetites, with their difficulties, or with their sense of malaise? Because I think Augustine was right: prayer is all about desire, and desire is about hope for satiety – be it physical, emotional, or cognitive. Prayer is anticipating that our desires can or might be met by someone or something, out there somewhere, and allowing ourselves to imagine how that might come to be. There is, perhaps, no bleaker statement than the words, “I haven’t got a prayer.” Where there is prayer, there is imagination, and imagination is a sign of hope.

It takes a bit of courage, sometimes, to admit to what we imagine, what we secretly hope for. It might be a world of peace and prosperity for all, but it might also be for the demise of an enemy or for a successful and stress-free life. Psychologists Ann and Barry Ulanov observe that in this way, all prayer is confession, even the prayers where we are asking for stuff. By coming face-to-face with God, we also have to come face-to-face with ourselves, including our selfishness and narcissistic longing.

So, have I got the courage to verbalise my personal wish-list? To take this idle moment and allow my imagination to present God with all my deepest, darkest desires? Well, it sounds like it might be good for me, whether God is listening or not. Prayer, it seems, is an opportunity for some gritty self-reflection and deep personal growth. So why not? Here goes: