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
Comment
Politics
4 min read

The assisted dying bill is an undignified mess

Literally life-changing legislation needs a parliament at its best not its worst.

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

A parliamentary committee meets, sitting at wooden raised desks in a wood panelled room.
The bill committee meets.

The first clue came when MP Kim Leadbeater’s private members’ bill passed in the House of Commons at the end of November. She came outside to greet pro-euthanasia campaigners like she was emerging as a winner from the Big Brother house, in tears of joy, whooping and hugging and high-fiving, with prime minister Keir Starmer gurning awkwardly in her wake. 

For her and her supporters, this was indeed great news. But these optics were far from great. It was as though she was celebrating the consequence of the legislation she’d introduced: “Whoa! Wonderful news everybody! We’re going to be allowed to help people to kill themselves.” 

It’s not a good look, even to those who may wish for such assistance. Where was the dignity, the key word that assisted-suicide lobbyists have appropriated for their cause? Not in this carefree triumphalism, this cork-popping celebration of the prospect of death-on-demand. 

Since then, the bill’s faltering passage through parliament has been characterised by this absence of dignity, a kind of cowboy rustler pushing a herd of supporters in a single direction, towards statute. And this lack of dignity matters. Not just because it is, literally, the most life-changing legislation any of us will see in our lifetimes, but because the dignity of parliament matters very much indeed. 

I don’t mean the ritual flummery, the state opening by the monarch, people marching about with wigs and sticks, Black Rod and all that. I mean dignity in the sense with which we honour our democracy, the way in which we frame our legislature seriously and with due process. 

Leadbeater presents as a good person and there is no apparent evidence to the contrary. But she is an inexperienced parliamentarian. Her selection for the seat of Batley and Spen, now Spen Valley, was rushed through in 2021, memories remaining acutely sharp of the murder of her older sister, Jo Cox, in the constituency in 2016. And, naturally, she has sat on the Government’s backbenches for less than a year. 

 Her inexperience of parliamentary process and scrutiny has shown. Committee hearings have been rammed with those who support assisted suicide and held in unseemly haste, such is the rush to get it into law. Before her bill’s second reading, she described it as having the strongest safeguards in the world, each patient requiring a sign-off from a High Court judge. When this proved impractical, the judge was replaced with a social worker, which apparently was “even safer”. So, safer than even the strongest safeguards in the world?   

But more worrying still is how the passage of the bill has been factionalised. Leadbeater has alienated the mild-mannered by calling opposing voices “noise”, which is a bit like lamenting that a debate should have two sides at all. And she’s called those who disagree with her “unconstructive” and complained that opponents have “mobilised”. Well, duh. That’s how parliament works. Indeed, it’s part of its dignity, rather than a simple inconvenience for an MP in a hurry. 

The media have noticed this lack of respect for procedure. I’m not sure that there’s ever been such resistance to proposed assisted-suicide legislation in the public prints before. Even the Guardian, which might be relied upon to see it as a progressive cause, has turned more than ambivalent. Only columnist and assisted-suicide flagbearer Polly Toynbee is available for a piece that amounts to saying we should move along, there’s nothing to see here and Leadbeater’s bill is doing just fine. 

She, too, claims absurdly that opposition is only coming from people who oppose assisted suicide. Well, blow me down. Try as I might, I can’t trace her complaining that Lord Falconer’s supposedly independent Commission on Assisted Dying of 2011 was both funded and packed with his cause’s supporters.  

In passing, it should be noted what an underminer of parliamentary dignity is Falconer too. He has claimed that justice secretary Shabam Mahmood’s opposition to the bill should be discounted because of her “religious beliefs”. Mahmood is a Muslim. For a constitutional lawyer, Falconer shows scant regard for our constitution. We might as well say that his views should be discounted because he’s a progressive secularist.  

One might expect PM Keir Starmer to bring some quality to this, as an alleged stickler for legal procedure. It remains a mystery, as a supporter of the principle, that he’s left assisted suicide to a private members’ bill. If he really wanted it, it should surely be a Government bill. Cynics among us wonder if he has honoured a promise given to the terminally ill Esther Rantzen with token support for a private members’ bill, but knows it will fail.  

Again, lack of dignity. If dignity in dying means anything since it was misappropriated as a campaign slogan for assisted suicide, then it should be accompanied by dignified debate and amendment in parliament. This bill has provided precisely the opposite. Let it die.

Join with us - Behind the Seen

Seen & Unseen is free for everyone and is made possible through the generosity of our amazing community of supporters.

If you’re enjoying Seen & Unseen, would you consider making a gift towards our work?

Alongside other benefits (book discounts etc.), you’ll receive an extra fortnightly email from me sharing what I’m reading and my reflections on the ideas that are shaping our times.

Graham Tomlin

Editor-in-Chief