Article

Assisted dying

Death & life

14 November 2023

4 min read

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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Comment

Holidays/vacations

Mental Health

Psychology

Time

12 July 2024

7 min read

How to get the best time out of your downtime

The joys and perils of taking time out for summer holidays.

Roger Bretherton

Roger is a Clinical and Coaching Psychologist.

A pair of sunglasses beside a swimming pool.

Jakob Owens on Unsplash.

For the first few days of any summer holiday there seems to be something wrong with my brain. Having looked forward for months to the moment when I can finally down tools and get some rest, having yearned for weeks to be free of the relentless schedule of emails and meetings, the moment finally arrives and I, well… hate it. I’ve wanted to stop for ages and then when I get the chance, I don’t want to. The flywheel momentum of the to-do list somehow carries over into the holiday and turns the first few days into an obsessive nightmare of drivenness.

This usually manifests in the agitation of wanting to rest while being unable to do so. My schedule says stop but my mind hasn’t got the memo. Instead of gently sculling across the pool, I’m swimming time trials through an obstacle course of inflatable beds and dayglo sea creatures. My family is quick to remind me that the languid currents of the pool were designed for relaxation, not for achieving a personal best. ‘It’s called the lazy river, Dad, not Verstappen at the Nürburgring.’ It makes me laugh, but it doesn’t make me stop. Nor does it stop them shouting things like ‘He’s taking the apex’, and ‘Dad’s got DRS’ from their sun loungers every time I sluice past.

In the old days, psychiatrists used to call it the Sunday Neurosis, the mild state of agitated low mood that afflicted people on their day off. The inescapable feeling that we should be doing something on days when there is nothing to do. The realisation that we’re not quite sure who we are when we are freed from the daily demands we can easily resent. I don’t know what you have planned for the summer- a beach party in the Bahamas or an Airbnb in Bridlington or the classic post-Covid staycation- but if you’re planning to take a break of any kind there are a few things you should perhaps keep in mind to make the best of it.

If we must work full throttle to the final hour – we may have to accept that we’ll spend the first few days on holiday getting used to being on holiday.

First. Slow down slowly.

We have a tendency to think that life can change at the speed of thought. Just because our diaries say holiday, doesn’t mean that our bodies are working to the same schedule. The autonomic nervous system that governs our state of physiological arousal largely operates automatically. It isn’t synched to our Outlook calendar and can’t deliver relaxation on demand, no matter how much we would like it to. Psychotherapist Deb Dana likens changing our state of physiological arousal to taking a lift down a few floors. It takes time to move from a highly active state, to a more relaxed and connected way of being. It doesn’t happen at the flick of a switch and we only agitate ourselves more thinking it should. She says we should befriend our nervous system. Instead of impatiently asking ourselves why we aren’t more relaxed, we should simply ask whether we need to be this agitated right now. And if we don’t, accept that it may take us some time to adapt to a less demanding environment.

When it comes to holidays, this suggests we should allow ourselves some time to acclimatise. Our bodies don’t automatically relax the moment they hit the beach, or hike the mountains, or lie under canvas - they need some time. We can do this before the holiday starts, by slowly decelerating as time off approaches. Like a car approaching a junction, if we want to stop smoothly, we might want to hit the brakes long before we reach the stop sign. And if we can’t do that – if we must work full throttle to the final hour – we may have to accept that we’ll spend the first few days on holiday getting used to being on holiday. It may not make us a pleasure to be with, but we can at least understand that it’s just how our bodies work. We are not droids, there isn’t an off switch on the back of our heads.

On holiday, we can take time to savour the experience of living- to be in our bodies, not just use them.

Second, get into your body (and out of your mind).

There’s a reason people spend so much time on holiday exercising their bodies: surfing, climbing, walking, riding. And weird stuff too, that you’d never dream of doing at home. One time in Normandy we booked a hand-pumped locomotive and huffed/puffed our way up and down a railway line for an afternoon. If I didn’t have the blisters to prove it, I’d think I’d dreamed that. Why do we do these things? Because it feels good to be aware of our bodies. Even my laps around the lazy river had a certain logic to them.

Many of us spend most of our time in disembodied thought. We can sometimes feel like the involuntary participants in a workplace time and motion study, in which worth is measured by output. It doesn’t matter where you work – home, school, office, a boat, the woods – sooner or later a spreadsheet will find you. You can run, but you cannot hide your data. And the impact this has on us is that we tend to be more aware of whether we have hit our targets than we are of the toll these targets take on our bodily wellbeing. Just recently I was asked to support a management team going through a stressful restructuring. One guy claimed he didn’t feel the stress of it- he just got on with the job. But when I sympathetically suggested he might be paying for it with his body, the litany of physical ailments he produced sounded like the list of side effects in a 1980s pharmaceutical commercial. He didn’t think he was stressed, but his body kept the score.

Let’s face it, going on holiday itself is stressful. It’s ranked 42 on the Holmes-Rahe Life Stress Inventory, just above ‘minor violations of the law’. Apparently packing for Marbella is more stressful than being pulled over by the cops. But it’s worth it if it creates a space in which we can de-stress, a space in which we can remember that we have a body, a body that needs to be looked after. Of all the benefits of bodily awareness – the positive sense of how our body feels, not the crippling consciousness of how it looks – perhaps the greatest is its capacity to turn off the hyperactive judgement of our minds. On holiday, we can take time to savour the experience of living- to be in our bodies, not just use them.

If we are defined by our output, who do we become when our output drops to zero?

Third. Make time to connect.

What happens when we slow down and learn to live in our bodies again? We become open to connection: socially, emotionally, even spiritually. Back to Deb Dana. She notes that when we take that slow elevator down from the souped-up state of busyness to a more relaxed and open state of mind, we activate the ventral vagal nervous system. She calls it our ‘home away from home’- which seems especially apt for being on holiday. In this state we are happier to be seen by others and therefore to be in relationship with them. Whether it’s a conversation while walking, or an evening card-game, or a meal together, all of them offer a chance for us to dwell in our home away from home in connection with others.

One of the things that can keep us so obsessively busy, is that we are not always sure who we would be if we stopped. We’re not certain we have a right to exist when we’re not being productive. If we are defined by our output, who do we become when our output drops to zero? This is why for thousands of years the practice of rest has been enshrined in spiritual practices. Without space to detach ourselves from the hectic pace of life we will inevitably confuse who we are with what we do. The Judeo-Christian tradition called it sabbath, not just a day of rest, but a way of being in which there is nothing left to prove. Holidays can offer us that opportunity, if we are willing to take it. Because after all what do we call someone who becomes more relaxed and embodied and connected? I think: more human.