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

10 November 2023

6 min read

When obsession shakes certainties and challenges beliefs

What happens when questions of belief are subject to obsessive behaviours? The impact of OCD on key life moments.

Paula Duncan

Paula Duncan is a PhD candidate at the University of Aberdeen, researching OCD and faith.

A close-up of a complex clock mechanism featuring small statues within it.

The Millennium clock tower.

National Museum of Scotland.

I’m eleven years old and I’ve been given a New Testament in our school assembly. This is the first time I’ve owned a copy of the Bible. So far, I’ve only heard it read to me in school or the few times I’ve gone to church with my family. I flick through it that evening, taken by the table at the front that directs you to different verses that speak to how you might be feeling. I find myself reading Revelation. The imagery frightens me. The tone, the threat, the fear, and the condemnation… would this be me if I didn’t believe in the right way? If I didn’t believe enough? I’m terrified of this book, these words, terrified of God, even. Mostly, I’m terrified by my own doubt and uncertainty about all things religious, despite wanting to believe. What if God isn’t real? What if God is and I just don’t believe enough? God will know I’m not sure. I tell myself not to think about it. If I’m to avoid thinking about it, I can never read the Bible again. I accept this as a rule.

I’m twelve years old and I’m standing in the National Museum of Scotland in Edinburgh, listening to one of Bach’s minor key concertos playing from the Millennium Clock. To me, it looks like it depicts some sort of hellscape straight from the book of Revelation. Death, suffering, and evil are everywhere in this model with its eerie red glow at the bottom. It brings up all the thoughts I’ve been trying to avoid – “you don’t believe enough” and “this is what hell looks like.” I tell myself to forget about it. If I’m to forget about it, I need to make sure that I never talk about it and don’t tell anyone how afraid of it I am. Talking about it makes it real, I think. I accept this, too, as a rule.

I’m thirteen years old and I’m sitting in a church trying to concentrate on the service. I can’t because I keep having the thought that I don’t believe enough. I’m worrying about what the reading might be – I’m still too scared to read the Bible and I can’t prevent myself from hearing it in this space. I’m afraid of thinking that I don’t believe enough, and that God will know because this is God’s church after all. I tell myself that I do not belong in this place if I cannot control my thoughts. If I can’t do that, I can never go to church again. This too, becomes a rule.

I’m fourteen years old and I’ve started praying every evening. I’m not sure what prompted this, but I also know that I must do it correctly. If I pray and forget to conclude with “amen”, then it seems obvious that God will continue to listen to my thoughts as if I’ve forgotten to hang up the phone. I try to keep my thoughts corralled and pure when I pray. If I don’t end my prayer, God will hear all my worst thoughts – the ones I am ashamed of, the ones that scare me, the ones that fill me with doubt. I tell myself that I can no longer run that risk. If I’m to prevent this, I shouldn’t pray. Another rule.

I was scared to say these things aloud – to voice my fears or doubts in case they somehow became worse if I acknowledged them.

I’m now in my late twenties, and I have been diagnosed with Obsessive-Compulsive Disorder (OCD) and I’m slowly unlearning the rules I’ve created for myself over the years. Each of them, in their own way, was designed to keep me safe from harm, safe from thinking about something that frightened me, or acknowledging difficult emotions like doubt and uncertainty.

It has been a long road to reach that diagnosis. OCD is regularly misunderstood and presented as punchline of jokes – “I’m so OCD!” is one that I’ve heard far too many times when someone simply means that they’re organised. The problem with these jokes is that it disguises the reality and makes it that bit harder for people to recognise what it is they’re really dealing with. OCD-UK, a charity to whom I owe a great deal, describe OCD as follows: “Obsessions are very distressing and result in a person carrying out repetitive behaviours or rituals in order to prevent a perceived harm and/or worry that preceding obsessions have focused their attention on.”

Obsessions could cover virtually any topic, and everyone will experience compulsions in slightly different ways. I didn’t recognise that I was living with OCD because almost all of my compulsions were mental rituals or avoidance behaviour. I would try and avoid thinking about things, check whether thoughts upset me, avoid reading the Bible… Layers and layers of compulsive behaviour in response to frightening intrusive thoughts that became associated with faith. I was scared to say these things aloud – to voice my fears or doubts in case they somehow became worse if I acknowledged them. I now know to call this “magical thinking” but I still find it difficult at times to accept that I cannot cause something to happen simply by saying it.

It can be particularly difficult for people with OCD to cope with uncertainty. I can see why anxiety and doubt about the existence of God has been hard for me to tolerate. I also know that I can never achieve absolute certainty and part of learning to live with OCD is learning to accept that and make choices despite it. Last year I attended the International OCD Foundation (IOCDF) Faith and OCD conference and was overwhelmed by the sheer number of people there. So many people with the same worries and doubts as me, and many more who had found that OCD impacted them in different ways.

But it was hard for a doctor to diagnose me until I could find the words to articulate what I was experiencing. It wasn’t until I started reading books about other people’s experiences with OCD that I started to recognise my own thought patterns, my own fears and doubts in other people’s words. Author and video creator John Green shares a very powerful video titled “What OCD is like (for me)” where he shares what his experience of having OCD and says:

“I can say what it is like more than what it is.”

This gives me a little more courage to tell people what living with OCD can be like and represent some of the diverse experiences of the condition. For someone who was too frightened to open a Bible, I think it’s a little ironic that I am now a theologian. My doctoral research project is focusing on faith and OCD, and in particular, how it might affect someone’s relationship with God. I hope to make use of some of my own experience along the way – examining my fear of not being sure enough, my worries that my intrusive thoughts would somehow offend God… I hope that by sharing this, I can raise a little more awareness of an experience that so many of us try to keep secret or just aren’t ready to speak about.

Through advocacy and research, I’d like to share a little of, as John Green says, what OCD looks like (for me). I’d like to add my voice – now that I’ve found it – to the discussion in the hopes that someone might read this and recognise what they’re going through. And if that’s you? You’re not alone. There is help and there is hope.