Article
Assisted dying
Death & life
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.
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
Change
Identity
1 min read

How to be (un)successful

Could busyness really be the counterfeit of significance?
A man sits cross legged in a park with a laptop on the grass in front of him. He looks to one side.
Malte Helmhold on Unsplash.

You probably want to be a success. 

That’s OK – it’s a very reasonable thing to desire.  

The questions ‘Am I successful?’ or ‘What is success?’ are deeply significant and to ask such questions is a normal part of the human experience. The yearning for a life of purpose, as elusive as it can seem, is felt acutely by the majority of those who have ever lived – certainly by more than might admit it. (Those feelings of inadequacy you experience may be more common than you think.) And now more than ever it is understandable that you may feel you are not particularly successful, or not successful enough. We are assaulted by a combination of capitalism and consumerism, social media and cancel culture, polarised ideologies and virtue signalling, topped off by the wounds of our parents passed down – all of which can amalgamate into producing some pretty angsty, pressure-driven people. 

It’s not just you; I’m pretty sure we all have a bit of a problem with success (the word itself is so subjective), and our idea of it can often be fuelled by wounds rather than vision, romanticised projections rather than reality. Because we are all somewhat flawed, any worldly contribution we try to make can get precariously entangled with a me-fixated narcissism on a fairly regular basis.  

Most of us know that being successful is not simply about money, looks, large numbers or power. That’s just a caricature to which very few reasonable people actually subscribe, right?  

Well, sure – at least on the surface. 

My social-media feeds are rammed full of early-to-mid-thirties enjoying a kind of spandex-clad transcendence. 

The thing is, despite seeing through it and being repelled by it in others (we see it’s all vanity, inch-deep), something in us longs for success on these terms. But much more interesting than skimming along the surface of ‘success’ is excavating deeper into some of the core motivating beliefs we humans have about ourselves, such as mistaken pride in thinking we each control our destiny, or paranoia that tells us there’s an inherent scarcity of everything in the world. These are the swell that carry along the undercurrent of comparison – where we see the lives of others and long for a different reality for ourselves. And comparison – so often eliciting either pride or despondency – rarely ends well.  

A cursory glance through the wisdom of online articles on the matter tells us millennials typically understand that material wealth isn’t the marker of success – there are enough old, sad, rich people to show that. Instead, success has now become synonymous with living a life that others want. Chase an experience. Go adventure. Wanderlust. #yolo. To succeed in life is to publicly consume as many unique experiences as you can during your short time on earth.  

I don’t know about you, but my social-media feeds are rammed full of early-to-mid-thirties enjoying a kind of spandex-clad transcendence. Success for today’s generation would seem to look a lot less like the overweight suit-clad city trader selling their soul to the system, making shedloads of cash to buy a slice of suburban real estate with a Porsche in the drive, and more like the lithe and mindful global citizen doing ‘life on my terms’. Think coastal living, yoga on a stand-up paddleboard in the morning, slaying the emails in your industrial co-working space, eating a superfood lunch, nailing a couple of zoom calls early evening before smashing some gua bao and margaritas with ‘your peeps’ at the latest pop-up restaurant before taking an Uber home. #squadgoals  

There’s no escaping the fact that technology has shrunk the world and as James Mumford notes, ‘global capitalism has brought so many different ways of life closer to us than ever before. We can see vividly a greater number of people who we want to be.’ This can bring up hidden feelings we thought we’d buried long ago.  

I often feel unfulfilled. Sometimes completely lost. For years I haven’t been able to admit that. Until fairly recently I would find myself looking at others and thinking: ‘Don’t they ever struggle with life’s big questions? Don’t they ever want to give up? Surely, I can’t be the only one sinking under the weight of comparison?’ Far from freeing me from my broken sense of self, the version of faith I was trying to live by was exacerbating the core wound I recognised in myself. That wound was a sense of feeling a failure, unsuccessful. And like an unwelcome parasite, it fed on comparison to others.  

Read any random couple of articles on ‘successful’ people talking about how ‘successful’ they are, and a lot of what’s conveyed is a profoundly angsty relationship with time: ‘You only have one shot at life’; ‘I don’t want to waste my time on earth’; ‘You can never get it back.’  

It’s as though we have an inherent recognition – and for some, dread – of the physical limits placed on us by virtue of being mortal and human. But what if unencumbered productivity, unceasing activity and unrelenting progress – however that is defined – are signs less of success than of self-centred insecurity? Could busyness really be the counterfeit of significance?  

It’s as if we have, left unchecked, an insatiable appetite for accomplishment. It’s not hard to see where this comes from. Paul Kingsnorth comments that: “Modern economies thrive by encouraging ever-increasing consumption of harmful junk, and our hyper-liberal culture encourages us to satiate any and all of our appetites in our pursuit of happiness. If that pursuit turns out to make us unhappy instead – well, that’s probably just because some limits remain un-busted.” He goes on to suggest that this is a fundamentally spiritual problem, because ‘a crisis of limits is a crisis of culture, and a crisis of culture is a crisis of spirit.’ 

So far so depressing? 

It needn’t be. 

Fullness of life – true success, if you like - is found in living to serve others above ourselves. 

Despite my continued struggle with all of the above, (neatly summarised by the inner critic’s voice asking me ‘what have you got to show for your life?’), I am beginning to learn that ‘life in its fullness’ (as Jesus once described what he came to offer) is found elsewhere. So, what does this look like and how do we successfully access this fullness of life? This quote can come across – and I’ve heard it used as such – like a marketing slogan, dangling a golden carrot in front of sad or vulnerable people to recruit them into church. Presumably that wasn’t what Jesus had in mind.  

Now there’s no denying the fact that Jesus was one of the most influential people who ever lived. Arguably THE most influential. Generally, even those who don’t follow him recognize that what he taught was pretty timeless. (Also evidenced by the 2.6 billion people today who are happy to be called Christian.) All of this suggests he had some fairly wise takes on how to live life well, and that his perspectives have stood the test of time. So, when he is recorded as teaching about how to discover what he described as ‘life in its fullness’, the chances are there is something valuable and insightful for those of us searching for success.  

The thing is, in this particular speech, Jesus conceptualized ‘life in its fullness’ as a shepherd who ‘lays down his life for the sheep’. Sure, he was talking about himself, but he was also talking more broadly about the human experience. Jesus’ point is that fullness of life – true success, if you like - is found in living to serve others above ourselves. This flies in the face of much conventional ‘self-help’ wisdom, but it would seem you cannot find true abundance any other way.  

We might well think: ‘Well hang on a minute, Jesus claimed to die for the sins of humanity – we can’t all do that!’ Absolutely right, and please don’t try. But in dying and raising to life again, Jesus foreshadowed the journey of surrender and rebirth that each person who chooses true success must go through. As C. S. Lewis said: ‘Nothing that you have not given away will be really yours. Nothing in you that has not died will ever be raised from the dead.’ This new life of serving others above ourselves – where we seek to align our desires, loves and motivations, our use of time and energy, words and actions with those of Jesus – comes to resemble the promise of life in its fullness. Discovering that would seem fairly successful wouldn’t it? 

 

How to be (UnSuccessful) is published by SPCK.