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

Comment

Culture

Politics

3 December 2024

5 min read

The assisted dying debate revealed the real role of Parliament

MPs from areas where people are vulnerable and at risk were more sensitive to the dangers.

M. Ciftci

Mehmet Ciftci has a PhD in political theology from the University of Oxford. His research focuses on bioethics, faith and politics.

An MP stands and speaks in a parliamentary debate.

MP Diane Abbott speaks in the debate.

Parliament TV.

What would be the effect of allowing assisted suicide for those ‘people who lack agency, the people who know what it is to be excluded from power and to have decisions made for them’, asked Danny Kruger MP, as he wrapped up his speech? ‘What are the safeguards for them? Let me tell the House: we are the safeguard—this place; this Parliament; you and me. We are the people who protect the most vulnerable in society from harm, yet we stand on the brink of abandoning that role.’

His words capture an important aspect of Friday’s debate: what is the point of Parliament? Do MPs meet to turn public opinion polls into policies? If the majority are in favour of something, do MPs have nothing left to do but to follow the public and sort out the fine details? We might instinctively say ‘Yes!’ It seems right and democratic to treat those whom we elect as people we select and send to do our bidding. And the polls do seem to show the majority of people supporting assisted suicide, at least in principle – although there are good reasons to be sceptical about those figures and about the conclusions drawn from them.

But there are numerous times when the majority are known to be in favour of something but politicians refuse to endorse it. Polls repeatedly show that a majority are in favour of reintroducing the death penalty. Why might it be right for MPs sometimes to ignore what the purported majority thinks and to use their own judgement?

Because Parliament is not just a debating chamber.

An older way of referring to it was to call it the ‘High Court of Parliament’ because ‘parliament, classically, was where individuals could seek the redress of grievances through their representatives,’ as law lecturer Dr Robert Craig writes. It performed its function admirably in response to the Horizon scandal: a legitimate grievance was brought to its attention, and it responded to redress the wrongs done to the sub-postmasters by passing a law to ‘overturn a series of judgments that could only have been obtained, and were only obtained, by a toxic, captured and wilfully blind corporate culture’.

Friday’s debate featured many MPs who understood what they were there to do. They acknowledged the ‘terrible plight of the people who are begging us for this new law’ as Danny Kruger said. But they also spoke up for those who were in danger of being harmed and wronged by the bill: the disabled and the dying, and all the vulnerable who were not there to speak on their own behalf.

Many echoed the concerns expressed by Diane Abbott about coercion: ‘Robust safeguards for the sick and dying are vital to protect them from predatory relatives, to protect them from the state and, above all, to protect them from themselves. There will be those who say to themselves that they do not want to be a burden. … Others will worry about assets they had hoped to leave for their grandchildren being eroded by the cost of care. There will even be a handful who will think they should not be taking up a hospital bed.’ And evidence of coercion is hard to find and trace: ‘Coercion in the family context can be about not what you say but what you do not say—the long, meaningful pause.’

An analysis shared on X by law lecturer Philip Murray found an association between the level of deprivation in a constituency and how likely a Labour MP was to vote against the bill. He also shared figures showing that 2/3 of MPs from ethnic minorities voted against it. In other words, MPs from areas where people are vulnerable and at risk were more sensitive to the dangers of helping people to kill themselves.

The second reading of the bill on Friday was a crucial moment for them to decide whether the bill would fix an injustice or whether it would itself cause harm.

But it seems that many MPs did not appreciate what the debate was about or what they had gathered to do. Layla Moran MP said: ‘The media are asking all of us, “Are you for or against the Bill?”, but I urge hon. Members to think about the question differently. The question I will be answering today is, “Do I want to keep talking about the issues in the Bill?”’ But James Cleverly MP intervened: “she is misrepresenting what we are doing at this point. 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.” He was right to be impatient. Unlike the Oxford Union, the vote has consequences. Parliamentarians are not there merely to debate. As the term ‘High Court of Parliament’ suggests, when MPs (either on their own initiative or as a government) propose bills, what they are often doing is conveying a plea to redress some grievance, and their debates are to decide whether to respond by making laws to grant justice to the wronged.

The second reading of the bill on Friday was a crucial moment for them to decide whether the bill would fix an injustice or whether it would itself cause harm, because the scrutiny that the bill will undergo in the following stages is not likely to be as rigorous as with government bills. As a Private Member’s Bill, the assisted dying proposal is free to be scrutinised by a committee selected by the MP who has proposed the bill, i.e. Kim Leadbeater. When the bill reaches the stage for a final vote in the Commons at the third reading, no further amendments can be made and the time for debate is likely to be short.

It is rare but bills are sometimes defeated at the third reading. With eighteen abstentions on Friday and at least thirty-six MPs claiming they might change their minds later, there is still hope.

Each sitting of the Commons begins every day with a prayer by the Speaker’s Chaplain, who prays that MPs ‘may they never lead the nation wrongly through love of power, desire to please, or unworthy ideals but laying aside all private interests and prejudices, keep in mind their responsibility to seek to improve the condition of all mankind.’

We can only hope and pray that at their next opportunity, MP will consider this bill in light of their responsibilities as the country’s High Court, charged with protecting the most vulnerable in society from harm.