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

Culture

Politics

4 October 2024

5 min read

Assisted dying and the cult of kindness

I witnessed an assisted death. We need to be honest in the debate about it.

Matthew Hall

Matthew is an author and screenwriter.

A tableau shows minature figures of two people, one sitting on a life size syringe and the other stands

Etactics Inc on Unsplash.

The Assisted Dying Bill is likely to be passed into law this autumn, the government having promised to ‘rush it through’. The debate will invariably be conducted in a fog of euphemistic language in which ‘compassion’ and ‘dignity’ will feature heavily on both sides, while the main point is likely to be missed: the legalisation of euthanasia or AD, marks a tectonic shift from a Christian to a post-Christian society and should be a wake-up moment for dozing Christians.

I was recently present when my aunt, an artist who had become a Canadian citizen, died by euthanasia in her own home while in the very early stages of motor neurone disease. She was 72, divorced, living independently, fully mobile (although she had lost the use of one arm) and was laughing and joking up to the moments before the doctor (or ‘The Killer’ as her son called him) injected the first dose of the lethal cocktail. It happened at 7pm on a Tuesday evening. She had made the phone call requesting her death at 3pm the previous Sunday – yes, a Sunday. Service of a kind our NHS can only dream of.

As a reluctant witness to what I consider a murder-suicide, I was nevertheless beguiled by the relatively clean ending (although there was some disturbing gurgling that apparently occurs as a result of the lungs filling with fluid) to a life that was about to become very difficult. Her two older siblings, including my mother, are each currently several years into slow deaths from combined Parkinson’s and dementia.

I am an almost daily visitor and a secondary carer to my mother, and while she is mute, benign and seemingly contented, the toll on my stepfather and on me is enormous. I often pray for it all to be over – it’s an endless grind and her former self would be utterly horrified to see herself this way! – and yet, as a Christian, I have to see purpose in it. One thing it certainly does do, is force carers to be selfless and compassionate in the strict sense of the word, which is ‘to suffer with’.

Her decision to die was the ultimate consumer choice – she availed herself of a service that promised to free her from her ailing body as quickly and comfortably as possible.

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My aunt didn’t want the trial of becoming ill and dependent, and the Canadian government gave her an opt-out which she grabbed the instant she received her diagnosis. Confirmation by two doctors that she was terminally ill and of sound mind – almost a trifling formality – got her immediate approval. She was, to use her kind of language, ‘out of here’ a mere three months later.

How could she have been so cavalier and determined to die, despite the protests of her son, nephew and granddaughters? She was, in hindsight, a perfectly minted product of the 1960s who believed above all in doing her own thing - whatever felt right. Such notions were anathema to her Christian parents and their dutiful wartime generation but are now the norm.

Like many who came of age to the sound of the Beatles, she toured the spiritual supermarket and picked out the nice bits from Christian, pagan and Eastern religions – predominantly those that allow you to think that life is about ‘being in tune’ or feeling good about yourself. This did most definitely not include becoming immobile and having strangers change her nappy. She believed in an afterlife, ‘love’, aliens and reincarnation but definitely not in judgement or consequences for her suicide.

Her decision to die was the ultimate consumer choice – she availed herself of a service that promised to free her from her ailing body as quickly and comfortably as possible, with the added bonus of leaving her assets to her family.

The truth, as the Canadian experience demonstrates, is that AD is not a slippery slope but a cliff edge.

Polls in Canada and the UK show that the vast majority would consider this a win all round. According to Opinium, 75 per cent of British adults support AD. In political terms this a ‘bridge issue’ almost without comparison, uniting 78 per cent of Conservatives with 77 per cent of Labour supporters, yet no issue should more starkly dramatise the unbridgeable chasm between Christian and secular world views.

The sharpness of this divide has, however, been successfully obscured by the insidious (and to my mind, diabolical) Cult of Kindness that has inveigled itself into both secular and Christian space. Imitating Christian virtues, it subverts them by subtly perverting language - by using ‘compassion’ when what is meant is ‘convenience’, for example – and by making ‘happiness’ rather than self-sacrifice the highest good. This leads both sides into dishonesty and self-delusion.

The biggest pro-AD lie is that it is merely an escape route for the tiny few facing the most intolerable suffering with no additional consequences. The truth, as the Canadian experience demonstrates, is that AD is not a slippery slope but a cliff edge. It is now the fifth most common cause of death and climbing by 30 per cent each year. Every seriously ill Canadian now feels some pressure to address the option. Cases of people choosing AD out of despair, depression or at the suggestion of a lazy or uncaring State official are already numerous. Those who have signed an advance consent waiver setting a date for their euthanasia in the event of their mentally incapacity, are now being terminated. In some cases, the demented refuse to cooperate and are euthanised under forced sedation. The State is already saving money and families are saving their inheritances. Life itself has been downgraded.

The Christian side indulges in even bigger untruths. Windy episcopal speeches about advances in palliative care avoid the hard fact that denying AD involves many suffering prolonged and painful deaths while family finances are destroyed and carers worn down to a husk. The pill can’t be sugared: thou shalt not kill is absolute, not an invitation for an ethical discussion. The point is so fundamental that to avoid it and be drawn into discussing the minutiae of legislation is a betrayal of the faith.

Christians won’t save the secular world from AD and its consequences, but the current debate is an opportunity for honesty and for Christians to save themselves from the delusion that the true virtue of compassion can be inverted to justify killing.

The Christian religion began with an agonising death of a kind which its scriptures exhorts its followers not to fear. It’s a tough message: God doesn’t promise the comfort we would like in this life. We do have the means and the duty to alleviate much suffering, but death as a consumer choice is simply off the table.