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
6 min read

Assisted dying’s problems are unsolvable

There’s hollow rhetoric on keeping people safe from coercion.
Members of a parliamentary committee sit at a curving table, in front of which a video screen shows other participants.
A parliamentary committee scrutinises the bill.
Parliament TV.

One in five people given six months to live by an NHS doctor are still alive three years later, data from the Department of Work and Pensions shows. This is good news for these individuals, and bad news for ‘assisted dying’ campaigners. Two ‘assisted dying’ Bills are being considered by UK Parliamentarians at present, one at Westminster and the other at the Scottish Parliament. And both rely on accurate prognosis as a ‘safeguard’ - they seek to cover people with terminal illnesses who are not expected to recover. 

An obvious problem with this approach is the fact, evidenced above, that doctors cannot be sure how a patient’s condition is going to develop. Doctors try their best to gauge how much time a person has left, but they often get prognosis wrong. People can go on to live months and even years longer than estimated. They can even make a complete recovery. This happened to a man I knew who was diagnosed with terminal cancer and told he had six months left but went on to live a further twelve years. Prognosis is far from an exact science. 

All of this raises the disturbing thought that if the UK ‘assisted dying’ Bills become law, people will inevitably end their lives due to well-meaning but incorrect advice from doctors. Patients who believe their condition is going to deteriorate rapidly — that they may soon face very difficult experiences — will choose suicide with the help of a doctor, when in fact they would have gone on to a very different season of life. Perhaps years of invaluable time with loved ones, new births and marriages in their families, and restored relationships. 

Accurate prognosis is far from the only problem inherent to ‘assisted dying’, however, as critics of this practice made clear at the – now concluded – oral evidence sessions held by committees scrutinising UK Bills. Proponents of Kim Leadbeater’s Terminally Ill Adults (End of Life) Bill and Liam McArthur’s Assisted Dying for Terminally Ill Adults (Scotland) Bill have claimed that their proposals will usher in ‘safe’ laws, but statements by experts show this rhetoric to be hollow. These Bills, like others before them, are beset by unsolvable problems. 

Coercion 

Take, for example, the issue of coercion. People who understand coercive control know that it is an insidious crime that’s hard to detect. Consequently, there are few prosecutions. Doctors are not trained to identify foul play and even if they were, these busy professionals with dozens if not hundreds of patients could hardly be counted on to spot every case. People would fall through the cracks. The CEO of Hourglass, a charity that works to prevent the abuse of older people, told MPs on the committee overseeing Kim Leadbeater’s Bill that "coercion is underplayed significantly" in cases, and stressed that it takes place behind closed doors. 

There is also nothing in either UK Bill that would rule out people acting on internal pressure to opt for assisted death. In evidence to the Scottish Parliament’s Health, Social Care and Sport Committee last month, Dr Gordon MacDonald, CEO of Care Not Killing, said: “You also have to consider the autonomy of other people who might feel pressured into assisted dying or feel burdensome. Having the option available would add to that burden and pressure.” 

What legal clause could possibly remove this threat? Some people would feel an obligation to ‘make way’ in order to avoid inheritance money being spent on personal care. Some would die due to the emotional strain they feel they are putting on their loved ones. Should our society really legislate for this situation? As campaigners have noted, it is likely that a ‘right to die’ will be seen as a ‘duty to die’ by some. Paving the way for this would surely be a moral failure. 

Inequality 

Even parliamentarians who support assisted suicide in principle ought to recognise that people will not approach the option of an ‘assisted death’ on an equal footing. This is another unsolvable problem. A middle-class citizen who has a strong family support network and enough savings to pay for care may view assisted death as needless, or a ‘last resort’. A person grappling with poverty, social isolation, and insufficient healthcare or disability support would approach it very differently. This person’s ‘choice’ would be by a dearth of support. 

As Disability Studies Scholar Dr Miro Griffiths told the Scottish Parliament committee last month, “many communities facing injustice will be presented with this as a choice, but it will seem like a path they have to go down due to the inequalities they face”. Assisted suicide will compound existing disparities in the worst way: people will remove themselves from society after losing hope that society will remove the inequalities they face. 

Politicians should also assess the claim that assisted deaths are “compassionate”. The rhetoric of campaigners vying for a change in the law have led many to believe that it is a “good death” — a “gentle goodnight”, compared to the agony of a prolonged natural death from terminal illness. However, senior palliative medics underline the fact that assisted deaths are accompanied by distressing complications. They can also take wildly different amounts of time: one hour; several hours; even days. Many people would not consider a prolonged death by drug overdose as anguished family members watch on to be compassionate. 

Suicide prevention 

 It is very important to consider the moral danger involved with changing our societal approach to suicide. Assisted suicide violates the fundamental principle behind suicide prevention — that every life is inherently valuable, equal in value, and deserving of protection. It creates a two-tier society where some lives are seen as not worth living, and the value of human life is seen as merely extrinsic and conditional. This approach offers a much lower view of human dignity than the one we have ascribed to historically, which has benefited our society so much.  

Professor Allan House, a psychiatrist who appeared before the Westminster Committee that’s considering Kim Leadbeater’s Bill, described the danger of taking this step well: “We’d have to change our national suicide prevention strategy, because at the moment it includes identifying suicidal thoughts in people with severe physical illness as something that merits intervention – and that intervention is not an intervention to help people proceed to suicide.” 

 Professor House expressed concern that this would “change both the medical and societal approach to suicide prevention in general”, adding: “There is no evidence that introducing this sort of legislation reduces what we might call ‘unassisted suicide’.” He also noted that in the last ten years in the State of Oregon – a jurisdiction often held up as a model by ‘assisted dying’ campaigners – “the number of people going through the assisted dying programme has gone up five hundred percent, and the number of suicides have gone up twenty per cent”. 

The evidence of various experts demonstrates that problems associated with assisted suicide are unsolvable. And this practice does not provide a true recognition of human dignity. Instead of changing the law, UK politicians must double down on existing, life-affirming responses to the suffering that accompanies serious illness. The progress we have made in areas like palliative medicine, and the talent and technology available to us in 2025, makes another path forwards available to leaders if they choose to take it. I pray they will. 

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