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.

Article

Assisted dying

Creed

Suffering

5 November 2024

4 min read

Assisted dying: in praise of being a burden

It's not a reason to end a life, it's the very possibility of our being human.

Jonathan Rowlands

Jonathan is a theology lecturer and Liverpool FC fan.

A younger hand holds a wrinkled older hand of someone in a bed.

A lot has been said already about assisted dying. In the raging bonfire of public discourse, there has been a lot of heat, but not a lot of light. But amid all the noise surrounding Parliament’s upcoming discussion around assisted dying, a recent conversation hosted by Prospect between Brenda Hale (former President of the Supreme Court) and Rowan Williams (former Archbishop of Canterbury) served as a reminder that we are, despite everything, still capable of having meaningful and fruitful discussion about even the most divisive of issues.

The conversation is earnest and hard-won throughout; both Hale and Williams each push and probe the other for more detail, more nuance, more outworking of implications. And yet their tenor remains respectful. There is no cheap point scoring, no trite comments or easy aphorisms. These are two people working to understand the other, in full recognition of the gravity of the topic.

One particular moment, however, was frankly spine-chilling. As the conversation progresses, Hale is asked the following: “How do you deal with the pressure questions – pressure from family or financial pressures? What safeguards can you build in?” Her response – in full, for context – is as follows:

“Well, you can build in the safeguards that the decision must be made without undue influence, coercion, duress or fraud. But in the end, it’s a matter of evidence, isn’t it? One of the things I find most difficult is that I don’t think it’s necessarily irrational for somebody to take into account the suffering their suffering is causing to the people dear to them, or the burden that looking after them is placing upon the whole community.

I wouldn’t call that “undue influence”, but it’s one of the questions I find most difficult about all of this. You know, obviously there’s duress, there’s financial abuse, there are all of those sorts of things that have got to be checked against, and there ought to be objective evidence of absence of that. But when it comes down to somebody thinking, “I don’t want to be a cause of others suffering,” that seems to me to be a reasonable thing for somebody to take into account.”

The idea that my dependency or burdensomeness might factor into decisions about whether I continue to live, seems to me to be contrary to the very notion of the Christian message. Let me explain why.

We are made to be a burden, then. To depend on others, to be burdensome to them, is to be human.

We are, whether we like it or not, now rapidly approaching Christmas. At this time of year, Christians celebrate the birth of Jesus; the divine Son of God made flesh and born of a virgin. As the divine Son of God, Jesus lived the perfect human life of joy, grace, and faithfulness; the kind of life I can only aspire to.

Because of this, as a Christian, I look to Jesus’ perfect life of faithfulness as a model for what a truly healthy human life looks like. And I am often surprised by what I find there. For example, it turns out true human flourishing does not involve getting married, having sex, or having children; Jesus’ perfect life of flourishing featured none of these things.

But crucially, Jesus’ perfect life often involved depending upon others; upon being a burden to those around him. As an itinerant travelling teacher, Jesus relied on the financial support of his followers to make his ministry possible. He relied on being made and given food to eat, and a roof to sleep under. He was far from self-sufficient. Rather, he gladly made himself a burden to others in service of his ministry.

But more than this, we often overlook the radical significance of the Christian claim that, at Christmas, we celebrate God’s becoming a baby. For the first years of his perfect life, Jesus was entirely – entirely – dependent upon his parents for all his needs. Here we see God, in the person of Jesus, depending upon Mary and Joseph to feed him, to clothe him, to cuddle him, to clean up his sick and his excrement. This is what human flourishing looks like.

This is mirrored at his glorious death, too. Prior to his arrest, Jesus asked his friends for support; to stay awake while he prays for comfort. The Gospels go on to tell us that, having been mercilessly tortured, beaten, stripped, and interrogated, Jesus had his cross carried by a man named Simon of Cyrene. After his death, having no tomb of his own, Jesus was buried in the family tomb of his follower Joseph of Arimathea. And this, too, is what human flourishing looks like.

Throughout his entire life Jesus lived the perfect life of human joy and faithfulness. And this often involved depending upon others and being a burden to them in every way conceivable. We are made to be a burden, then. To depend on others, to be burdensome to them, is to be human.

To think, then, with Baroness Hale, that my dependency and burdensomeness upon others might somehow serve to underwrite a decision to end my life, is fraught with difficulty for me as a Christian. I simply cannot reconcile her words with the life I see Jesus living in the Bible: a life of joyful, difficult burdensomeness.

There may be many other reasons why people decide they want their lives to end. But a sense of burdening others ought not to be one of them. Being a burden is not a reason to bring one’s life to an end, because it is the very possibility of our being human in the first place. To need others, to place ourselves into their care, does not make us less human, it makes us more human. And therein lies its glory.