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
Freedom of Belief
Politics
5 min read

Holding an opposing view is not 'imposing' belief on the assisted dying debate

Opposing interventions from believers on dishonesty grounds is a sinister development in public debate

Nick is an author and Senior Fellow at Theos,a think tank.

A graphic shows a gallery of people with religious symbols on their clothing.

“There are some who oppose this crucial reform,” Esther Rantzen wrote recently of MPs who dared to opposed Kim Leadbeater’s Terminally Ill Adults (End of Life private member’s bill. “Many of them have undeclared personal religious beliefs…  [do] they have the right to impose them on patients like me, who do not share them?” 

This is a peculiarly common argument for those who support the right to Assisted Dying, which is surprising as it would be hard to come up with a less coherent case against religion in public life. The idea that elected MPs engaged in parliamentary debate are “imposing” their will on other people is odd. The idea that MPs have undeclared personal religious beliefs is strange too. I think it’s fair to say that most people know that Shabana Mahmood is a Muslim or Tim Farron is a Christian, and for those that don’t know that but do have access to Google, it takes less than five seconds to find out the religious beliefs of an MP. 

Perhaps most tellingly, however, why is it that we should be alert to – read wary of – MPs religious beliefs? Do the non-religious not have beliefs of which we should be cognizant? If my MP is motivated by a philosophy of relentless, Peter Singer-like utilitarianism or vague, incoherent secular humanism I’d like to know. 

In truth, Rantzen’s intervention in this debate, like that of a number of others – Lord Falconer, Simon Jenkins, Humanists UK, etc. – is part of a recent and rather dispiriting attempt to de facto exclude religious contribution to public debates by accusing them of being dishonest. 

To be clear, secular voices have long tried to exclude religious ones, but the tactics change. Back in the New Atheist heyday of the early twenty first century, all you needed to do was splutter something about sky fairies or Bronze Age beliefs or mind viruses to close down any sort of religious intervention. If, as Richard Dawkins famously put it, faith was one of the world’s great evils, comparable to the smallpox virus only harder to eradicate, no sensible parliament could possibly want to heed what faith had to say. 

Even back then, however, there were subtler arguments against faith, which usually came in the form of semi-digested Rawslian political liberalism, and demanded the religious participation in public debate had to obey the strictures of “public reasoning”, using logic and language that “all reasonable people” will understand. 

There are quite a few holes in this particular away of thinking (who are “reasonable people” anyway?) but as a rule of thumb, it’s not a bad one to follow. It is quite right and proper, if only as a matter of pragmatism, to speak in terms that your opponents will get, just as it is right and proper, as a matter of courtesy, to be open about what ultimately motivates you. 

And so that is what religious figures – MPs, leaders, institutions – do. Having read through pretty much all their contributions to the assisted dying debate, in parliament and beyond, I can testify that not many people, on either side of the debate, quote scripture or invoke papal teaching as a way of persuading, let alone commanding, others. (As it happens, parliamentarians haven’t really done that since the 1650s, but that’s another story).  

Rather, they argue in terms of policy and principles. They talk about the risk of legislative slippage, of changing attitudes to the vulnerable, of the need for better palliative care, of existing pressures on the NHS, etc. This is quite right and proper. As James Cleverly remarked in the Common debate in November, “We are speaking about the specifics of this Bill: this is not a general debate or a theoretical discussion, but about the specifics of the Bill”. And so that is what they did. 

Does anyone seriously think it is a good idea to compel a believing Jew to stand up in parliament and declare her faith before she were allowed to speak? 

In effect, religious public figures, whether or not their beliefs are “declared”, do what they have (rightly) been asked to do by those who have appointed themselves as gatekeepers for our public debate. And so this has forced the usual suspects to pivot in their argument. No longer able to dismiss religious contributions for what they say (“don’t quote the Bible at me!”) they are now compelled to dismiss them for what they don’t say. Hence, the trope that has become popular among such campaigners – “you are not being honest about your real motivations”. 

A new report from the think tank Theos, entitled, How much have your religious views influenced your decision?”: religion and the assisted dying debate, unpacks the various objections that have been levelled at the religious contribution to the debate, and then systematically dismantles them.

Some of these objections are old school in the extreme.  

Religious belief is too intellectually inadequate or disfiguring for debates of this nature. 

Religion is insufficiently willing to adapt and compromise for politics.  

Faith is ill-fitted or even inadmissible in a secular polity or culture.  

But the report majors on the newer objection, so clearly displayed by Esther Rantzen, what we might call “dishonesty” objection, that religious contributors are fundamentally dishonest about their motivations and objectives. 

In truth, this is no stronger than the more tried and tested objections, and it displays a serious, possibly intentional, misunderstanding of what a religious argument actually is. To quote the political philosopher Jeremy Waldron, such secular campaigners “present it as a crude prescription from God, backed up with threat of hellfire, derived from general or particular revelation, and they contrast it with the elegant simplicity of a philosophical argument by Rawls (say) or Dworkin [and] with this image in mind, they think it obvious that religious argument should be excluded from public life.” 

Contemporary arguments against religion in public life are slightly more sophisticated than Waldron’s caricature here, but not much. The idea that religio should be “declared” as a competing interest, so as to stop religious participants in debate from being “dishonest” is every bit as sinister, against both the letter and the spirit of plural, liberal democracy. Does anyone seriously think it is a good idea to compel a believing Jew to stand up in parliament and declare her faith before she were allowed to speak?  

As the assisted dying debate returns to parliament for the final push, there will be much animated debate. That is quite right and proper. A democracy needs vigorous and honest argument. But part of that honesty involves opening the doors of debate to everyone, and not subtly trying to exclude those with whom you disagree on the spurious grounds that they are being dishonest.

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