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
Care
Comment
Politics
5 min read

Suicide prevention groups are abdicating their responsibility on assisted dying

Not speaking out is a dereliction of duty to vulnerable people

Jamie Gillies is a commentator on politics and culture.

Three posters with suicide prevention messages.
Samaritans adverts.

On Friday, Kim Leadbeater’s assisted suicide bill will return to the Commons for a second day of report stage proceedings – when MPs consider amendments. Third reading, when the House votes on the bill itself, is expected to take place the following Friday. Opponents of this controversial bill will be hoping that enough MPs feel uneasy about it to say ‘this far and no further’. They will need around 30 MPs to have changed their minds since a vote last year in order for a defeat of the legislation to be assured. 

As politicians have weighed this issue, there’s been a conspicuous silence from one constituency you’d expect to have been outspoken: suicide prevention organisations. People might be surprised to know that Samaritans, perhaps the best-known suicide prevention charity in the UK, a cornerstone of prevention efforts since the 1950s, did not submit evidence on the bill before Westminster or a separate bill at Holyrood. Other groups like Suicide Prevention UK (SPUK) and Papyrus have also been silent. One has to wonder why, given the bearing a law change would have on their work. 

Suicide prevention charities and their volunteer counsellors do incredible work. Over the years, millions of people in desperate circumstances have received life-changing support. Today, every person contacting a suicide prevention helpline is told that their life has value, and that there is hope in the bleakest of circumstances. Every caller without exception is also told not to harm themselves. But this couldn’t continue under an assisted dying law. A two-track approach would have to be devised, depending on a caller’s circumstances. A scenario helps to illustrate this point: 

Caller: “I am thinking about ending my life”. 

Adviser: “Please know that there is hope. I’m here to listen and I can offer support, so you don’t have to make that choice.” 

Caller: “Well, I have terminal cancer you see…” 

Adviser: “Oh, sorry, I need to put you through to a colleague. Your situation is a bit more, err, complex. You need to know your legal rights”. 

Some proponents of assisted dying are quick to dismiss concerns about suicide prevention, arguing that assisted dying and suicide are wholly separate categories. However, this argument doesn’t hold water. Whilst campaigners use euphemistic terminology and employ Orwellian rhetoric about ‘exercising choice at the end of life’, and people ‘shortening their deaths’, it is clear that the bills they promote would permit suicide with the enablement of the state. 

An assisted dying law would see doctors prescribing lethal drugs to certain patients which they can take to end their own lives. The dictionary definition of suicide — “the act of killing yourself intentionally” — has not changed. Neither has legislation giving expression to this idea. Logically and legally then, assisted dying involves suicide. 

Samaritans is clear on this. A ‘policy brief’ on assisted dying published in November — the most recent statement on the issue by the organisation — begins by saying that it usually applies to terminally ill people and involves “assisting the person who is terminally ill to hasten their own death”, adding: “The act that kills them is performed by the person themselves”. Their death is a suicide, in other words. 

You might assume an organisation that says, “every suicide is one too many”, whose stated aim is to see “fewer people die by suicide”, would be opposed to assisted dying - or at the very least concerned about it. However, Samaritans goes on to say that it does not “take a position on whether assisted dying is right or wrong, or on what the law should be on this matter”. Why? Because it “would involve making a range of judgements” that could compromise people’s “perception of our ability to provide non-judgemental emotional support”. 

Samaritans and other suicide prevention organisations should be intensely interested in what the law says. The introduction of assisted dying in any part of the UK would mean suicides being condoned and enabled in healthcare settings for the first time — a radical departure from the existing approach. Professionals always counsel against suicide, no matter a person’s motivation for wanting to end their life. Every citizen is precious, and every life worth saving. 

Prevention organisations must also realise that a change of this gravity will have a wider impact on culture. Research shows a rise in non-assisted suicides in countries that have introduced the practice. Sending a message that some suicides are permissible might make their prevention work harder. Organisations saying nothing in the face of all this is astonishing. 

As noted above, assisted dying poses practical questions as well as philosophical ones. If the law changes, organisations will no longer be able to adopt a universal approach to suicide prevention. A call to a suicide prevention helpline from a terminally ill person will have to be handled differently to a call from a person who is not terminally ill. For some, suicide would be a healthcare ‘right’. How will organisations navigate this? Doesn’t it concern them? 

There has been some advocacy from individuals engaged in suicide prevention, if not from organisations. In February 2024 psychiatrists wrote to The Times to warn that the Westminster assisted dying Bill would “undermine daily efforts to prevent suicide”, particularly among the elderly. Louis Appleby, the UK Government’s suicide prevention adviser has also spoken against a change in the law, arguing that it would harm efforts to drive down suicides. 

Appleby explained, “once the principle behind suicide prevention has been set aside, once any part of the ground has been ceded — not only to allow suicide but to assist it — we have lost something we may not get back. There are countless causes of irremediable hardship, many reasons people may want to make despairing choices. Could they become exceptions to suicide prevention too?” This principled position is exactly what you’d expect from someone whose job is protecting hurting people, no matter their personal situations. 

I’m loath to criticise suicide prevention groups as I deeply appreciate their work. However, by not contributing to the debate on assisted dying, they are abdicating their responsibility to shape a policy that would impact their mission, and the people they serve. A policy that would lead to state-sanctioned suicides and impact culture in profound ways. It’s terribly sad to see groups that fight to end suicides failing to stand against a policy that would harm their work. Failure to speak today may be viewed as a dereliction of duty in years to come. 

With a final vote on Kim Leadbeater’s Bill days away, and the decisive vote on Scottish plans not due for months, there is still time for suicide prevention groups to enter the fray. I pray that they will.

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