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.  

Events
Belief
Creed
Digital
Wisdom
6 min read

The wisdom of living with the question not googling the quick answer

Are we trading wisdom for apparent certainty?

Elizabeth Wainwright is a writer, coach and walking guide. She's a former district councillor and has a background in international development.

A person sits on a window sill with one raise knee.

In much of the work I’ve been involved in, whether writing, coaching, hillwalking, local politics, or international development, I’ve learned to ask questions I don’t have answers to, and sometimes neither do the people I’m with. We sit with the question, decide whether it’s the right one, try to discern what else emerges in our peripheral vision as we focus on it. It takes effort to come to something like an answer, and in doing so, we peel off layers of unknowing. It has taken practice, and it can be slow work. But in searching for good questions, I see they can be an entry point into not just information but wisdom too. And there are many places that are hungry for wisdom.  

I longed for better questions and more curiosity when I was a district councillor. Curiosity that made space for residents to share their stories and opinions, curiosity about different political positions and what might happen if we work across divides, about what might be possible if we could get past the way things had always been and imagine what they could become.  But the desire to save face, to be seen to be in control, was strong, and I felt it often got in the way of real conversation. To be committed to the process more than the product takes courage, I think. The courage of uncertainty, of saying, “I don’t know”, of putting humility and honesty before status. Sitting with questions can be difficult, perhaps even feeling like a luxury, but they show us ourselves and the world a bit more clearly, offering a pathway to relationship, to collaboration, to humanity, to wisdom.  

I have been thinking about the temptation to trade the wisdom of questions for the apparent certainty of instant answers, even wrong answers. It is a temptation that, in our age of one-click everything and the importance of image, is only quickening. It is a temptation that I have been thinking about, wondering if it started with that old temptation in the Garden of Eden. Staring at a painting of Adam and Eve in the Prado gallery a while back, I wondered whether that original temptation set us on a path of instant information but also of depleted wisdom.  

As I peered into the painting, a thought sparked: what if God told Adam and Eve they could eat fruit from any tree except the tree of the knowledge of good and evil not because he wanted us to stay ignorant or innocent (something that Philip Pullman explores in his Northern Lights books) but because he knew it was too easy for us to eat from that tree. He wanted us to live, and to search for knowing and wisdom ourselves. Eating the fruit would bypass experience, there’d be no need to develop muscles of thinking and discernment. And he wanted us to be wise, to keep creating and tending the world with him. When those first pulled-from-the-earth humans ate the fruit, it was like us still-dependent-on-the-earth humans asking Artificial Intelligence to write us an essay: we might get what we want, but we’ve bypassed the experience of thinking, creating, discerning what’s ours to say.  

This analogy creaks when pulled too far, but it lingers all the same. There’s a quote I’ve long appreciated, from the biologist E.O.Wilson:  

“We are drowning in information, while starving for wisdom. The world henceforth will be run by synthesisers, people able to put together the right information at the right time, think critically about it, and make important choices wisely.”  

Picking the fruit, becoming reliant on AI, gives us information but perhaps not the ability to think, and not the wisdom to make good choices. God wants us to be wise. The Bible’s Book of James says we can ask for wisdom. It is not withheld from us; it is not hidden. It’s everywhere, waiting to be called on.  

There are no digital shortcuts to the difficult work of community, no AI-shortcut to loving well, just as there was never a shortcut to complete knowledge of good and evil. 

It’s so easy to find answers now — Google solves problems and democratises access to information, unless of course you’re in a part of the world that has no digital access. In rural mid Devon and in rural Zambia, both places I’ve worked deeply with communities, you can’t simply access an online meeting or find the answer to a question you might have. Sometimes this feels a life-giving challenge: it increases the need for relationship, for trust, for community conversation. Other times is hinders progress: it means people can’t access jobs, or basic health knowledge, or government decisions that affect them. Google has changed who can access the world, how we interact with it, how we think and learn. Historically, people memorised poetry and scripture and news. The printing press changed that; words were pulled from minds and printed on paper. Our online existence has accelerated that: I don’t need to stretch my memory if I don’t want — I can find and store what I need digitally. We’ve outsourced our memory, and I wonder whether we’re also outsourcing our capacity to think and discern. 

In doing so, we risk disconnecting from ourselves, our relationships, our communities, our places. No longer do we need to rely on each other for knowing and wisdom — we can trust faceless digital forces that profit from us doing so. We risk too our unique ability to think creatively, to discern good sources, to think deeply and with nuance about a topic. If AI learns from everything that has been, it can synthesise and perhaps even extrapolate from that and project forward, but it can’t creatively imagine. It can’t reflect and speak wisdom.  

There is an ease and convenience to Google, to AI. There was an ease and convenience to picking the fruit to gain knowledge. But we are not called to ease and convenience. I think we are called to love, to care for our neighbours, and these things are necessarily inconvenient. Digital access to information is a tool, a resource, a gift that benefits many of us in many ways. But it could easily blunt our humanity, becoming a temptation that bypasses the work of truly living.  There are no digital shortcuts to the difficult work of community, no AI-shortcut to loving well, just as there was never a shortcut to complete knowledge of good and evil. With information available at the tug of a fruit — a click, a download, a request to an artificial intelligence — I am curious how our ability to sit with questions will change, whether we’ll feel beauty or fear in not having all the answers, whether we’ll lose our ability to discern, and to “have faith in what we do not see.”  

Sitting with questions, with curiosity, is I think an entry point to faith and to mystery. 

Jesus calls us to questions, to relationship, to love, not to answers that might be easily won but little interrogated. He knew that questions, not answers, were often the best response to questions. Questions to sit with, to hold up as a mirror, to walk as a path to wisdom. He asked a lot of them. Who do you say I am? How many loaves do you have? Do you love me? What do you want? Why are you afraid?  The Bible records Jesus asking questions, and sometimes offering answers too. But the point often seems to be the question itself, giving endless chances for people to question their assumptions, and their judgements, and to deepen their faith and make it personal. In doing so, Jesus offered a path to deeper and more meaningful knowledge of God, the world, others, and ourselves. And by asking questions he gave dignity to people, listening deeply to them, loving them, calling them into themselves. 

Sitting with questions, with curiosity, is I think an entry point to faith and to mystery. And we have companions as we do this: Jesus, early Christian mystics, prayer, the Psalms, each other – these are all places I turn to dig deeper into the knowing that comes through unknowing. To live with questions and within mystery, to listen deeply to each other, to speak the language of soul rather than certainty, might be difficult and countercultural. But in an age where the future is becoming less certain despite the whole world seemingly at our fingertips, I think it is where our hope is. After all, “what good is it for a man to gain the whole world but forfeit his soul?”