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

Trauma

7 July 2023

4 min read

Thoughts and prayers: why such words can really count

Cop-out phrase or the key to articulating something more powerful, Henna Cundill dissects the neurological power of a platitude.

Henna Cundill

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

A Coast Guard officer gives a press conference while looking grim-faced. Others look on.

A Coast Guard office gives the news of the loss of the Titan submersible crew.

“Our thoughts and prayers are with all those affected...”

We hear that repeated often enough, don’t we? Some public figure is quoted as saying this phrase in the body text (usually about paragraph five) beneath nearly every gut-wrenching news headline. “Thoughts and prayers” are the panacea, the platitude, the words to say when there is nothing that can be said.

It's easy to deride and dismiss these words, and many do. There is an understandable frustration when public figures serve suffering people with vapidity instead of vim. But perhaps I can make a case for “thoughts and prayers” being more than just a political cop-out? To be sure, these words are not everything, but they are something.

I love words, that’s why I try to write for living. (Try to, anyway.) I love languages too; I’m one of those annoying people who finds learning new languages pretty easy. Lots of people think they are rubbish at this, but they have missed the secret weapon: repetition. If you’ve the willingness to dig in and repeat vocab lists and word tables over and over again, and then over and over again, and then all over again. And then again. And then again, again… then learning a new language is easy. Repetition is the key, because repetition forges and reinforces new neural pathways in the brain.

You see, that’s the exciting thing about learning a new language: you can actually feel the incredible plasticity of the human brain in action. It doesn’t have to be a new language, you can mess with the language you already know – I promise that if you look at a car and say the word “bicycle” to yourself 100 times, the next time you see a car, you will likely have to consciously will yourself not to call it a “bicycle”. Go ahead, try it. (Car) bicycle, (car) bicycle, (car) bicycle … and repeat.

The human brain is constantly linking words and phrases to objects, emotions and perceptions, grouping things together by association. One study showed that participants were quicker to verbalise the word “priest” in response to a photo of a man in a dog collar when they had been shown a picture of the Pope immediately before. This is because the brain stores words in categories of related things, and this language storage system then has the power to shape what we perceive. Due to the association with the Pope, the participants perceived a “priest” and not a “vicar” or a “minister” or even just a “man.”

Think again about the word ‘bicycle’ – in your mind’s eye do you now also see a car? See, I’ve played a trick on you! If you saw the car, then I’ve gifted you a new (and, sorry, totally useless) neural connection between the word bicycle and the object car. You’ll probably unlearn this one pretty quickly – neural pathways can fade as well as develop. But philosophers have long pondered this strange power of language to create our sense of reality – we develop our perception of what exists based on what we can communicate. Put more simply: people generally pay attention to the objects and perceptions that they have words for, and often ignore the things for which they have no words at all.

Having something to say about suffering that gives us the ability to pay attention to it, to perceive and acknowledge it.

Of course, there are no words at all for that feeling one gets when reading about a school shooting, or a natural disaster, a mass murder or an accident. Horror is a screaming silence. “Our thoughts and prayers…” are typically the words to say that we have no words, that we are powerless to articulate what’s going on inside when we look upon the dust and ashes. But, if we take the philosophers seriously, and if we acknowledge the plasticity of the human brain, then putting these words around an event creates certain neural links and associations. It is having something to say about suffering that gives us the ability to pay attention to it, to perceive and acknowledge it, even when we would rather ignore and turn away.

And if you or I actually do think, and if you or I actually do pray for all those affected – especially if we are willing to do so again and again, and then all over again, well then, we have not only created a neural pathway, but we have also reinforced it. We have gifted those suffering people a little place in our minds – perhaps even a permanent corner of existence. They are perceived, seen, and if you have ever been in a place of suffering, you’ll know how much it matters that someone, anyone, pays attention.

Far from helping us to avoid reality, having something to say gives us the means to engage.

Perhaps this is why the Bible repeatedly emphasises the importance of praying for one another, and for the world, and even for one’s enemies? It’s not only that prayer works on God, but that prayer works on us – developing our plastic brains and increasing our capacity to pay attention, to perceive the suffering of others and to allow horror to birth compassion. Far from helping us to avoid reality, having something to say gives us the means to engage.

I am by no means arguing for platitudes instead of political power. Words are no substitute for tighter gun-control, better public safety, standards in public office and/or an open-hearted, open-walleted, boots-on-the-ground humanitarian response. Words are not a panacea, but neither are they powerless. Philosophers and prophets alike have long pondered the mystery that thoughts and prayers create realities – advances in neuroscience have only served to confirm the wisdom that was already in the room. To think and to pray is to create, to speak words that will bring life and breath out of dust and ashes.