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
Attention
Creed
Education
Psychology
6 min read

We miss so much when we only see what we are looking for

Explaining why we don't see the unseen - with the help of a gorilla.
A blurred image of a blindfolded man.
Manuel Bonadeo on Unsplash.

In a thriving Pentecostal Church on an English city street, a room full of worshippers are singing, clapping, dancing and throwing their hands in the air. The preacher cries “Come, Holy Spirit!” and there are cries of “Amen!” and “Yes Lord!” One person has tears on their cheeks.  

A few doors down, a few dozen Anglicans also gather. Heads bent over their liturgy books, there is a hum of responses and an air of reverence. “Give us the joy of your saving help: and sustain us with your life-giving Spirit.” The altar candles flicker as the community settles itself into pews. The Holy Spirit is no less present to these worshippers, although they respond in a completely different way.  

Both churches share one creed, in which they commit to their belief in God as the source of all things, seen and unseen. Whilst Pentecostal theologies tend to focus on the observable and unpredictable signs of the Spirit at work, many Anglicans would describe the Spirit in terms of an inner experience, perhaps one that is cognitive rather than physical. But either way, Christians share one belief – that God is present in the world, and we call that the Holy Spirit.  

However, there are also hundreds of people who walk past both of these churches, week by week, who would never dream of setting foot inside. Many of them will think that anyone who believes in God is deluded or deceived. Such rationalist thinkers often have a strongly monist view of the world, in which everything, even mysterious things such as human consciousness and perception of non-physical entities, must have a physical or biological basis. As Ebenezer Scrooge says to the apparent ghost of Marley in Charles Dickens’ book, A Christmas Carol, “You may be an undigested bit of beef, a blot of mustard, a crumb of cheese, a fragment of an underdone potato. There's more gravy than of grave about you, whatever you are!” 

It is almost impossible to convince someone who hasn’t had a first first-hand experience of God that anything like the Holy Spirit exists. Many nay-sayers, I suspect, quietly (or maybe not so quietly) believe that their unbelief is because they are more rational and maybe even more intelligent than those who get excited by such things. But there is another possible explanation for why some people apparently cannot, or will not, see the unseen.  

The British education system is heavily orientated towards STEM. Even when more creative subjects such as literature find their way into the syllabus, they are often studied in a rather dry and analytical way. Notwithstanding the efforts of the occasional maverick teacher, I recall much time spent learning how to identify the iambic pentameter of Shakespeare, and little (if any) time learning to articulate how his sonnets made me feel. Such a system turns out good scientists, but it may be that in doing so it trains our young people out of being able to perceive a whole raft of things which are arguably just as important to human flourishing.  

The world around us contains significantly more sensory input than our minds can process, so we simply don’t pay attention to most of it. 

A “selective attention test” can quickly prove this point. I did one recently with a room full of psychology undergraduates, almost all of whom had identified as monists. “Since you guys are the brightest and the best,” I simpered “let’s do a little intelligence test. Apparently only five per cent of the general population get the answer right to this puzzle, but in this room, I expect the success rate will be a little higher…”  

Having primed them by flattering their egos, I proceeded to show them a video called “The Monkey Business Illusion”, designed in 2009 by scientists Christopher Chabris and Daniel Simons. During the short film, a group of people pass basket balls to each other, and viewers are asked to count how many times the players wearing white shirts pass the ball. It seems simple enough, and when the film ended, I asked the students how many counted the right number of passes. Almost every hand in the room went up. No surprises there.  

Then I asked the more important question – who saw the gorilla? There was a smattering of laughter, and this time only about half of the hands went up. Meanwhile, the other half of my students were looking around at their peers, utterly confused… 

But it was true. In “The Monkey Business Illusion”, a person in a 6ft gorilla costume walks right across the middle of the scene, weaving through the players in the game. However, because most viewers are intently focussed on watching the players in white, they simply don’t perceive it. You can try this for yourself - the video I’m talking about can be found easily on YouTube, and if you follow the search term “selective attention test” there are many others like it.  

The material point is that the world around us contains significantly more sensory input than our minds can process, so we simply don’t pay attention to most of it. If you pause for a moment right now, you might notice that there is the hum of a heater in your room, or the noise of traffic outside, or the smell of an air freshener, or that a piece of your clothing that is too tight – things you were simply not aware of until I pointed them out. It’s common that we don’t perceive things until something else makes us think that they are important. If someone tells you that your house might have structural damage, you will suddenly start to notice every creak that comes from your walls and ceilings, even though those creaks have probably been happening for years.  

As social beings, we can be easily conditioned into paying attention to certain things and ignoring others. If I tell a group of students that intelligent people are highly attentive to the players in white shirts, I increase the likelihood that they simply will not notice a gorilla.  

There is good research to show that children, even in our modern and secular society, are inherently spiritual – most young kids believe in God, or gods, fairies and the existence of many things unseen. But this is not celebrated in our STEM focussed education system, wherein young minds are highly conditioned to let go of such “irrational” beliefs and trust in the full explanatory power of science. It is so effective that, by the time they get to my classroom at university, I’ve got little hope of persuading any of my monists that there was a 6ft gorilla without showing the video again and letting them see it for themselves.  

But there are always some people who are willing to challenge the idea that Marley was just an undigested bit of beef. There are always some people who attend churches of one type or another, or practice other forms of spirituality and religion. Some pray, some meditate, and many take part in rituals. This trains them in what anthropologist Tanya Luhrmann calls “micro-processes of attending”, leaving them more ready to perceive spiritual things instead of screening them out of their conscious awareness. How they respond might depend on preferred tradition – dancing, liturgy, or a little bit of both. But all agree that there is something going on that is unseen and important.  

Many STEM educated, highly rational and fully committed monists no doubt think that those who attend churches are deluded and deceived into perceiving unseen things are simply just not there. These nay-sayers have been taught, implicitly and explicitly, that it is more intelligent to believe in the all-explanatory power of science. But perhaps it is they who have been deluded and deceived? As the Monkey Business Illusion demonstrates, if you flatter someone’s intelligence enough, it becomes entirely possible to hide a 6ft gorilla in plain sight.  

Watch the Monkey Business Illusion

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