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.  

Article
Assisted dying
Death & life
Ethics
Politics
4 min read

What will stop the culture of death that libertarian Britain has embraced?

Now we’re allowed to end life with impunity

Graham is the Director of the Centre for Cultural Witness and a former Bishop of Kensington.

Diane Abbott speaks in the assisted dying debate.
Dianne Abbott MP speaks in the assisted dying debate.

Just a few days apart, two debates recently took place in the House of Commons concerning life and death. In the first, MPs voted to decriminalise late-term abortions. In the second, they voted for assisted dying. Both times, the reach of death grew a little longer.

Imagine a mother about to have a baby who is suddenly having grave doubts about whether she can manage a new child as the moment draws near. It’s not hard to sympathise with many in this situation, but rather than recommend she goes through with the birth, and perhaps putting the baby up for adoption for childless parents desperate to adopt, we now have passed legislation that allows us to terminate the baby’s life instead. Proponents argued this was to relieve a small number of women who had been prosecuted for late-term abortions. The reality is, however, that it will probably become more common. In the debate, Jim Shannon MP pointed out that in New Zealand, in the first year after their parliament voted the same way, late-term abortions increased by 43 per cent.

A baby a week before and a week after birth are virtually identical. Yet as a result of this bill, it will not be a criminal act to end the life of the first, but it will be to do the same to the second. What’s the betting that the logic of this will stretch before long to allowing parents to terminate the lives of newborn babies with a new limit – say up to one month after birth? The arguments will be exactly the same – sympathy for distressed parents who suddenly realise they cannot cope with a new life on their hands, especially if the baby is discovered to be flawed in some way. When emotional sympathy, personal choice and the rights of the mother over the baby become the only moral arguments, the logic is inevitable.

Despite the argument shifting rapidly against the Terminally Ill Adults Bill – the vote passed by 314 votes to 219, with 32 MPs apparently having changed their minds - it now looks likely that this second bill will pass into law in a few years’ time, despite scrutiny in the Lords.

Here on Seen & Unseen, we have scrutinised the arguments put forward for assisted dying over past months. We have argued about the unintended consequences for the many of permitting assisted dying for the few. In The Times a while ago, I argued that if ‘dignity’ means autonomy — my ability to choose the place, the time and the manner in which I die — there is no logical reason why we should refuse that right to someone who, for whatever reason feels their life is no longer worth living, however trivial we may feel their problems to be. With this understanding of dignity as unlimited choice, the slippery slope is not just likely, it is philosophically inevitable.

In both cases the logic of the arguments used means the march of our ability to bring about death will not stop with these measures, despite their proponents’ assurances that safeguards are in place.

These two votes reminded me of something Pope John Paul II once wrote. In an encyclical, Evangelium Vitae – the Gospel of Life - he warned that “we are facing an enormous and dramatic clash between what he called a “culture of death” and a “culture of life”.

He warned that this “culture of death” would be “actively fostered by powerful cultural, economic and political currents which encourage an idea of society excessively concerned with efficiency.” It is, in effect, he argued, “a war of the powerful against the weak: a life which would require greater acceptance, love and care is considered useless, or held to be an intolerable burden, and is therefore rejected in one way or another. A person who, because of illness, handicap or, more simply, just by existing, compromises the well-being or lifestyle of those who are more favoured tends to be looked upon as an enemy to be resisted or eliminated. In this way a kind of ‘conspiracy against life’ is unleashed.”

They were strong words, and in the UK at least, back in 1995, might have seemed alarmist. Yet I couldn't help thinking of them as these two bills passed through the UK’s national parliament. In both cases, the bills were introduced very rapidly with little time for serious moral deliberation. Both depended on emotional appeals to a small number of admittedly distressing cases without serious consideration for the wider cultural and philosophical ramifications of these seismic moves. Both encouraged the steady encroachment of death on demand.

What concerns me is what these bills say about the kind of culture we are becoming. MND sufferer Michael Wenham makes the point powerfully that this is all about autonomy and independence, a spurious kind of compassion, and the fact that palliative care is more expensive than subtly encouraging the dying to take their own life. Looking behind the arguments for compassion, it's not hard to spot the iron law of libertarian ideas of freedom, where individuals have absolute rights over their own lives and bodies that trump everything else. This is the kind of libertarian freedom that prizes personal autonomy above everything else and therefore sees our neighbours not so much as gifts to be valued and cherished, but limitations, or even threats to our precious personal freedoms.

Pope John Paul was right. It does seem that we are opting for a culture of death. And my fear is that it won’t stop here.

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