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.

Explainer

Creed

Psychology

18 September 2023

5 min read

Should you be ashamed of yourself?

Shame powers cancel culture, yet its historic role is guarding community boundaries. Henna Cundill takes an in depth look at shame - and empathy.

Henna Cundill

Henna is a researcher with the Centre for Autism and Theology at the University of Aberdeen.

The word 'SHAME' spray painted onto a grey hoarding in lime green paint.

Anthony Easton/flickr: PinkMoose, CC BY 2.0, via Wikimedia Commons.

“Put on this dunce’s cap and go and stand in the corner!” cries the teacher, and immediately we are transported to a scene that takes place in a schoolroom of centuries past. Likewise, if nowadays we were to see a woman being led down the street wearing a scold’s bridle, we might assume that there was a very odd sort of party going on; we might even intervene or phone the police. Why? Because these are not the scenes of 21st century Britain. We don’t do public shaming anymore – at least, we like to think we don’t.

But the truth is we very much do; in fact, shame is essential, at least to a certain degree. For a group to survive with any sense of collective identity and purpose, something has to prevent each person within that group from becoming too greedy, or too lazy, or too dishonest. That something is often the fear of being shamed, not even punished – just shamed. It doesn’t feel nice to be judged and found wanting, or to fear that you might be.

Think back to the last windy day when your recycling bin blew over – did you experience a passing moment of concern about the public pavement acrobatics of your wine-bottles, cake boxes and ready-meal trays? No need to blush – your neighbours probably rushed out ahead of you to hide their own multifarious sins. Studies have long shown that installing self-checkouts at supermarkets dramatically increases the purchase rates of “stigma items” such as alcohol and unhealthy foods. Oh, the things we do when we think no one is watching…

So, shame is, on one level, a functional tool which does the essential job of guarding the life and boundaries of a community. Perhaps one or two of us still eats a little too much and drinks a little too much, but shame is one of the things that keeps most of us from going too far, too often – or at least the threat of shame tends to discourage. As Graham Tomlin has recently explored – we still live in a society that equates over-indulgence with a lack of virtue.

It’s one thing for shame to guard certain moral boundaries (as long as we can all agree what they are) but we’re in a troubling place with the social ones.

However, when an individual does step out of line, then the shaming process has two modes of presentation: exposure or exclusion, sometimes both. This is most clearly seen in a court of law, where an offender is first ceremonially declared to be guilty (exposure) and then is subsequently sentenced (exclusion) – often “removed” from society, at least for a while, via a custodial sentence or a curfew. In this very clear way, shaming plays a functional role for the well-being of society as a whole.

But these two prongs of the shaming process can also happen in rather dysfunctional ways, some of which are dangerously subtle. We fear the recycling bin disgorging its contents because there is a certain social shame in being seen to consume too much junk. Fine. But what about the teenager who is compelled into a cycle of disordered eating because a schoolfellow has pointed the finger and said the dreaded word, “fat”? Likewise, many people love a chit-chat, and the fear of being excluded from a social group usefully prevents most of us from being too fixed on one topic, or from appearing inattentive or impolite. But in my research with autistic people, some have shared that they feel shamed out of social groups entirely simply because “chit-chat” is not right for them. Some have a language processing delay, others find “small talk” a bit confusing and inane and would rather talk about something specific. It’s one thing for shame to guard certain moral boundaries (as long as we can all agree what they are) but we’re in a troubling place with the social ones. Some of this shaming doesn’t sound very functional, not if the wellbeing of society is supposedly the goal.

The inverse of shame is empathy. Where shame excludes, empathy shows attentiveness.

Perhaps the saltiest example of this problem is the now infamous “cancel culture”. I know – even I can’t believe I would risk bringing that up as a writer, that’s how charged this debate has become. But de-platforming, boycotting, or publicly castigating someone for the views that they express – these are shaming activities, an attempt to render an individual exposed and excluded. It can be a very tricky argument as to whether this counts as functional shame, guarding the wellbeing of society, or dysfunctional shame, guarding little more than social norms.

We ought to try and take it on a case-by-case basis, but even then, sometimes what one person takes as a moral absolute another person sees as a social choice. At the same time, those who hold dearly to certain moral absolutes sometimes lose sight of the societal impact of what they say. The result can be a strange kind of war, one where there is virtually no engagement between two opposing factions, and the only weapons are a string of press releases and a whole lot of contempt. Eventually, often regardless of there being no engagement and no progress, both sides vigorously declare themselves to be the winner.

Jesus once said a strange thing when he was talking to a crowd. He said: “Settle matters quickly with your adversary who is taking you to court. Do it while you are still together on the way.” In other words, “Just have a chat first,” says Jesus, “and see if you can’t come to terms.” It was part of a much longer discourse where he also told the crowd to “love your enemies” – and this with the kind of love called agape, a love which favourably discriminates and chooses someone – very much the opposite of shaming them.

For my own research I have looked in depth at the shaming experience, and one of the conclusions that I come to is that the inverse of shame is empathy. Where shame excludes, empathy shows attentiveness. Where shame exposes an individual, empathy draws them into discussion. To empathise with someone is not to agree with them, but it is to recognise they are human just the same, and that through openness and dialogue it is possible for people, even those who have very different experiences of the world, to explore each other’s perspectives. The end point of that exploration may not be agreement – it might still be everyone back to their corners. But in the process no one has been shamed, no one exposed or excluded, no-one othered or dehumanised.

Of course, it is far easier to point the finger, to expose someone to the court of public opinion, and then to turn one’s face away, nose in the air, mouth clamped shut in an apparently dignified silence. On the surface this seems like the elegant response – live and let live – but in fact it is not: to designate someone as not worthy of attention is to very publicly inflict shame. We might as well clamp them into a scold’s bridle and lead them down the street. And, as we do so, let’s hope it’s not a windy day – or if it is, let’s be sure that we have firmly tied down the lids of our recycling bins.