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.

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Assisted dying

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29 October 2024

4 min read

Assisted Dying logic makes perfect sense but imposes a dreadful dilemma

The case for assisted dying appeals to choice and autonomy, yet not all choices are good. It means vast numbers of people will face a terrible choice as their life nears its end.

Graham Tomlin

Graham is the Director of the Centre for Cultural Witness and a former Bishop of Kensington.

A black and white picture shows a woman head and shoulders, she is looking up and to the side in an unsure way.

Anastasiya Badun on Unsplash.

Two broad cultural trends have led us to our current debate over assisted suicide.

One is the way consumer choice has come to be seen as the engine of successful economies. Emerging from Adam Smith’s theories of rational choice based on self-interest, given a boost by Reaganomics and Thatcherite thinking in the 1990s, the provision of a range of choice to the consumer is usually argued, with some logic, as key to the growth of western economies and the expansion of freedom.

The other is the notion of individual autonomy. Articulated especially in the past by figures such as John Locke and John Stuart Mill, the idea that individuals should be free to choose to dispose of their property, their time and their talents as they choose, as long as they don’t harm anyone else, has become standard moral fare in the modern world.

Put these two together, and the logic of assisted dying makes perfect sense. What can be wrong with offering someone a choice? Why should the state restrict individual freedom to end your life in the way you might decide to do so?

Yet expanding choice is not always good. Forcing an employee to choose between betraying a colleague or losing their job is not a fair choice. There are some choices that are unfair to impose upon people.

Assisted dying will lead us to this kind of choice. Imagine a woman in her eighties, living in a home which is her main financial asset, and which she hopes to leave to her children when she dies. She contracts Parkinson’s or dementia, which will not kill her for some time, but will severely limit her ability to live independently (and remember about of third of the UK population will need some kind of longer-term care assistance as we get older). At present, her only options are to be cared for by her children, or to sell her house to pay for professional care.

With the assisted suicide bill, a third option comes into play – to end it all early and save the family the hassle - and the money. If the bill passes, numerous elderly people will be faced with an awful dilemma. Do I stay alive, watch the kids’ inheritance disappear in childcare costs, or land myself on them for years, restricting their freedom by needing to care for me? Or do I call up the man with the tablets to finish it soon? Do I have a moral duty to end it all? At present, that is not a choice any old person has to make. If the bill passes, it will be one faced by numerous elderly, or disabled people across the country.

Even though the idea may have Christian roots, you don’t have to be religious to believe the vulnerable need to be protected

Of course, supporters of the bill will say that the proposed plan only covers those who will die within six months, suffering from an “inevitably progressive condition which cannot be reversed by treatment.” Yet do we really think it will stay this way? Evidence from most other countries that have taken this route suggests that once the train leaves the station, the journey doesn’t end at the first stop - it usually carries on to the next. And the next. So, in Canada, a bill that initially allowed for something similar was changed within five years to simply requiring the patient to state they lived with an intolerable condition. From this year, there is a proposal on the table that says a doctor’s note saying you have a mental illness is enough. In the same time frame, 1,000 deaths by assisted dying in the first year has become 10,000 within five years, accounting for around 1 in 20 of all deaths in Canada right now. Some MPs in the UK are already arguing for a bill based on ‘unbearable suffering’ as the criterion. Once the train starts, there is no stopping it. The logic of individual choice and personal autonomy leads inexorably in that direction.

Of course, some people face severe pain and distress as they die, and everything within us cries out to relieve their suffering. Yet the question is what kind of society do we want to become? One where we deem some lives worth living and others not? Where we make numerous elderly people feel a burden to their families and feel a responsibility to die? In Oregon, where Assisted Dying is legal, almost half of those who opted for assisted dying cited fear of being a burden as a factor in their decision. Or would we prefer one where the common good is ultimately more important than individual choice, and where to protect the vulnerable, we find other ways to manage end of life pain, putting resources into developing palliative care and supporting families with dependent members – none of which will happen if the option of assisted dying is available.

Even though the idea may have Christian roots, you don’t have to be religious to believe the vulnerable need to be protected. Changing the law might seem a small step. After all, doctors routinely administer higher doses of morphine which alleviate pain and allow a natural death to take its course. Yet that is a humane and compassionate step to take. To confront numerous people, elderly, disabled and sick with a dreadful dilemma is one we should not impose upon them.