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.

Column

Assisted dying

Comment

31 July 2024

4 min read

Polly's pop at a "pitiless God" distorts my argument

There’s more than one argument for opposing assisted dying.

George Pitcher

George is a visiting fellow at the London School of Economics and an Anglican priest.

Alexander Grey on Unsplash.

I hesitate to have a pop at the venerable Guardian columnist Polly Toynbee, partly because I like and admire her work. And partly, in this new media environment in which my enemy’s friend is my troll, I fear aligning myself with foam-flecked righties who use words like “Guardianista” and “wokerati”.

But she wrote a column late last week about assisted suicide that was just plain wrong. And, actually, I think she’s being profoundly illiberal on the subject, for reasons I’ll explain in a moment.

Assisted suicide – voluntary euthanasia, assisted dying, call it what you will – was a hobby horse of mine some 15 years ago when I wrote a book against it. Slightly more recently, Toynbee and I were on a broadcast interview together on an entirely unrelated subject when, to the bemusement of the presenter, she suddenly raised assisted dying to have a go at me. It was quite flattering.

Anyway, last week’s Toynbee column was of a kind, dismissing the anti-euthanasia case as the province of religious nutcases (presumably like me). Consider this massive straw man of a sentence: “Only God can decide how long we should suffer before death comes at a time of his pitiless whim, they say.”

I’m used to this, though not from Toynbee. Debating assisted suicide, it’s only a matter of minutes before someone will say that I shouldn’t impose my “sanctity of life” beliefs on other people. Eh? I’ve never used that phrase in this context (whatever it may mean). In fact, my views on assisted suicide are entirely secular, though informed by a faith that respects the primacy of compassion for and defence of the most vulnerable in our society.

I believe that a jurisdiction that enshrines in its legislature the principle that some lives are more worth living than others takes us into very dangerous moral territory. Related to that, a two-tier structure for the value of human life in the medical professions is abhorrent. That’s why I say that to despatch the weakest and most vulnerable among us is unacceptably illiberal.

The terminally ill, the disabled, the profoundly depressed and the aged and vulnerable really shouldn’t be treated as a nuisance to be helped on their way.

A bill will come back to parliament to change the law to allow assisted suicide this autumn. With new PM Keir Starmer in favour and a very different configuration of the House of Commons post-election, its chances of passing are said to be high.

But even Lord Falconer, the parliamentary poster-boy for assisted suicide, who convened a ludicrous “independent” commission in 2012 stuffed with euthanasia enthusiasts and useful idiots, has accepted that no so-called safeguards can entirely ensure that no lives will be lost to malfeasance or malpractice.

So, my question to Falconer and Toynbee is this: How many unnecessary lives lost to assisted suicide is enough to have what you want? 100? 50? One? Another number?

It’s commonplace for deeply distressing accounts of agonising deaths to be rehearsed in support of assisted suicide. Toynbee did so last week. But as Falconer must (or should) know, hard cases make bad law. The only focus here should be on how best to ensure that no one need die a bad death.

For Falconer and his supporters the solution is to legislate so that terminally ill patients can be helped to kill themselves. But speaking to end-of-life medical professionals, such as Baroness Finlay of Llandaff, many of whom claim that advances now mean that bad deaths are vanishingly few, it’s clear that the UK’s world-leading palliative care has in sight the day when no one need die a bad death.

That’s no comfort to someone who is suffering at the end of their life right now. But assisted suicide puts that palliative care target in jeopardy, when it makes death a form of medical treatment. Look at the record – the Netherlands now allows assisted suicide for those who are simply “tired of life”. That’s not where end-of-life care should go.

The burden of proof under the Suicide Act (1961) lies with the defendant, who currently faces a maximum jail sentence of 14 years for assisting or encouraging a suicide. Those who have demonstrated that they have acted with compassion and consent have in turn been treated with compassion and leniency in the application of the law. Invert that burden of proof, with the Crown needing to prove that an unscrupulous relative or friend coerced a victim into suicide, and we’re into a fresh hell of moral jeopardy.

The law works as it stands. The terminally ill, the disabled, the profoundly depressed and the aged and vulnerable really shouldn’t be treated as a nuisance to be helped on their way. Again, as we might expect Toynbee to know, that is wholly illiberal.

It looks like the assisted suicide lobby will get what they want this year. It will be hailed as a great liberal social reform. Doubtless they will find it in their hearts to forgive me if I continue to demur.