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

Culture

Psychology

Weirdness

23 October 2023

5 min read

Why smell jumps the queue when it comes to memories

Smells hardwire deep into the brain, writes Henna Cundill, as she explores why they jump-start such vivid memories.

Henna Cundill

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

An autumnal scene of a church yard and church framed by leafless trees.

'The smell of dust and damp stone will always cry “safety!”'

Jakub Pabis on Unsplash.

When I was a 22-year-old undergraduate my mother died quite suddenly. I can't remember the name of the undertakers we used, nor the chaplain who took her funeral. I can no longer visualise what any of their faces looked like. I know I visited the chaplain’s house to plan the funeral, but I can't remember exactly where that house was. What sticks is that the day of the funeral was a sultry summer's day, and both the chaplain and the undertakers smelt of perspiration. To this day there are moments where I catch that same whiff of man-sweat in some other location, and for a fleeting second, I am a bewildered 22-year-old once more.

Here is another memory. I attended a tiny, rural Church of England primary school in the middle of England. At the end of each school year, all of us donned our little Wellington boots, which smelt faintly of slurry (since this was dairy-farming country) and sweaty feet. Then we lined up in a crocodile and trudged through the bluebell-wood (damp leaves) and skirted the edge of fields (silage, which stings the nose) covering the mile or so between our school building and the village church.

We would enter the church grounds through the back field, hurrying through an eerily muffled graveyard with tombstones towering far above our heads and the grass disturbingly lumpy beneath our little feet. To the chidings of “Quickly!” and “Quietly!” we children scurried down a gravel path, away from this unsettling place of death, to reach the cool sanctuary of a little church, and the comforting smells (for me, at least) of damp stone and dusty hymnbooks.

Others may not have the same associations, but for me the smell of dust and damp stone will always cry “safety!” and the reassurance that “there are no ghosts in here!” in contrast to that troubling graveyard. From death to life. Yet, at the same time, getting stuck with my nose close to some man’s whiffy armpit on the Tube will forever insinuate that I am just a child pretending to be a grown-up, out of my depth, overwhelmed with one thousand decisions to make (“What flowers do you want for her coffin?”) and no-one to advise. In the midst of life, death again.

On reflection I will know that my emotions are being manipulated by my nose, in ways which are more or less than helpful depending on the circumstances.

Of course, I am not 22 years old and lost anymore, no matter what that man’s armpit tries to tell me. My rational mind knows better, but my rational mind doesn’t get a say – or doesn’t get the first say anyway. This is because smell is the only one of our senses that bypasses the thalamus (the brain’s ‘filtering gate’ that decides which part of the brain needs to respond to sensory input) and goes straight to the limbic system, where emotional memory is stored.

Sometimes it is very obvious that this is taking place, such as in the examples given above. On reflection I will know that my emotions are being manipulated by my nose, in ways which are more or less than helpful depending on the circumstances. But it can happen in more subtle ways too. Supermarkets infamously pump out smells to influence our buying choices, and we’re trying to sell our house right now, so we’ve been brewing a whole lot more coffee than we ever usually would.

Intriguingly, scientists don’t really know why the human sense of smell jumps the queue when it comes to cognitive processing. There are biological theories, such as that the smell of predator could wake up our ancestors while they were sleeping and/or could allow them to follow a scent trail quickly when fleeing danger or seeking food. There are social theories too, such as that we don’t have a lot of good words to describe smells, so the brain just doesn’t bother trying to analyse them. Whatever the truth of the matter, the reality is that (whether we like it or not) our noses are an emotional trip-hazard.

When I walk through those great oak doors there is a moment, a glitch in the matrix, when the unmistakable smell of church hits my nose. Dust, damp… a little hint of mouse.

I can’t help wondering what this tells me about my religious practice. Do I go to church because I have made a cognitive decision to worship God each Sunday? Or do I go to church because I am following my nose, getting away from a world full of armpits and responsibilities to a place where I am a seven-year-old girl, all gingham dress and wellies, feeling safe. If so, does it matter?

Truth is, my mind can give me a dozen reasons not to go to church every single week. In fact, two dozen reasons. More. It has always been a busy week; I’m always behind on work. The house always needs a sort out and the car is never washed. But because certain congregation members are normally counting on me for certain things, and because I’m still pretending to be a grown up, I typically drag myself out the door, and off to church I go.

And week on week, without fail, when I walk through those great oak doors there is a moment, a glitch in the matrix, when the unmistakable smell of church hits my nose. Dust, damp… a little hint of mouse. My body registers this before my mind; my shoulders drop a little of their tension. Even if it’s just for a fleeting moment, I start to feel that I know for sure what is absolutely real in my life and what is just pretend.

Is this knowledge irrational – since it doesn’t come from the cognitive part of my mind? Or is there a God who knows that the cognitive part of my mind sometimes tells me all sorts of untrue and unhelpful things. Is there a God who is choosing to reach out to me in more subtle, more ancient ways?

I can only wonder if I have been following my nose all this time, without even noticing. Drawn along by an ancient scent trail that leads me time and time again…this way…and that way…until I reach a place where there is safety, and bread.