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.

Review

Addiction

Culture

Theatre

24 June 2024

5 min read

The ancient drama of rehab

People Places & Things is a modern play with old stories.

Simon Walsh

Simon Walsh is a communications consultant, journalist and non-stipendiary priest in the Diocese of London.

on a stage a woman kneels on a bed amid frantic action around her.

Denise Gough as Emma.

‘There is no higher power,’ says a character defiantly in People Places & Things, the revival of Duncan Macmillan’s 2015 play about addicts and addiction. It’s an echo from Greek tragedy when anyone denies the gods, and now has a modern ring in all the self-help, self-belief talk of recovery and resolve.

Denise Gough reprises her lead performance as Emma for which, last time around, she swept the board in awards and nominations. It’s easy to see why. She’s on stage almost the entire time, compelling and fluent throughout. The opening scene has her in the white-box modern set wearing a Victorian costume, for her character is an actress in Chekhov’s The Seagull – almost meta, and the first hint and how this a show where realities and identities blur with layers upon layers.

Soon after, Emma (if that is her real name) checks into a rehab unit. She doesn’t feel she has a problem but is there for a break. ‘Drugs and alcohol have never let me down,’ she says at one point. A brisk female doctor in a white coat admits her, played by Sinéad Cusack. A couple of scenes later, Cusack reappears as the clinic’s group therapist. This time she’s full of empathy – barefoot and with a scarf over one shoulder – all herbal tea and sympathy.

But the therapist’s work with her charges is vital. Some even get to ‘graduate’ and host a non-alcoholic party the night before they leave, having successfully stayed the course. Probably not Emma though. She’s too feisty, individually unable to admit her problems, and inevitably she crashes. There’s a naturalistic feel to the production and narrative, even when it jolts into dream-like sequences or bright lights with thumping techno music.

Anyone with experience of an addict or addiction will find it all too familiar. The later scene where Emma returns to the parental home is a crucible of pain, and embodies the play’s title. It concerns ‘the people who can make us relapse, the places which trigger associations, and the things which are the props of the old habits’. And it’s made more complex by the family in grief over the recent, sudden death of Emma’s beloved brother in a freak accident. ‘It should have been you instead’ is the parental curse on this remaining child.

There’s a slow and silent feel to the way it develops. The word inexorable comes to mind, something that cannot be changed or stopped. Like Greek tragedy, the tension is in how this will resolve, and if it will turn out as badly as feared. It does and it doesn’t, which is at least true to the addiction journey.

Jeremy Herrin expertly directs an intensely fine cast: Russell Anthony, Holly Atkins, Ryan Hutton, Malachi Kirby, Danny Kirrane, Paksie Vernon, Kevin McMonagle, Ayò Owóyemi-Peters, Lousie Templeton, Dillon Scott-Lewis. These are nuanced, crafted performances which inhabit Bunny Christie’s versatile, stylish set with presence.

What the healings have in common is the aftermath – a sense of vision restored, stability refound, new clarity...

Faith plays at the edges of this work. There are passing references to religion: a ‘bibling grief’, communion wine, the power of prayer. More tears, said St Teresa of Avila, are shed over answered prayers than unanswered ones, and this outward expression of a cry for help connotes the spiritual struggle of addicts along with their pity. As the first disciples themselves asked, ‘Teach us, Lord, how to pray.’

Addiction was not something Jesus had much to say about. Healings take place throughout each of the four gospels. The sufferers present with various ailments and of differing origins. For some it is hereditary, others through sin (such as when Matthew records Jesus healing a paralyzed man with the words ‘your sins are forgiven’). At other times there is a clear need for recognition such as when Jesus visits his hometown. He ‘laid hands on a few sick people and cured them’ but otherwise ‘could do no deed of power there… and was amazed at their unbelief’.

These healings, however, do not obviously deal with addiction. The closest connection is probably the examples which deal with demons. The encounter with a man possessed in the land of the Gerasenes, a little earlier, is instructive. Here is someone who ‘lived among the tombs; and no one could restrain him anymore, even with a chain; for he had often been restrained but the chains he wrenched apart; and no one had the strength to subdue him’. But Jesus confronts the demon, the ’unclean spirit’, and sends it into a herd of swine ‘numbering about two thousand, which then rushes to the sea and is drowned.

What the healings have in common is the aftermath – a sense of vision restored, stability refound, new clarity. The healed demoniac is found with Jesus, ‘sitting there, clothed and in his right mind’, though the swineherds do not believe it and remain scared. They beg Jesus to leave and the ex-demoniac wants to go with him, but Jesus tells him to stay: ‘Go home to your friends, and tell them how much the Lord has done for you, and what mercy he has shown you.’ He is to give his testimony.

Drama at its heart has to be about telling a story and finding a universal truth.

It’s a running debate that lived experience and life identity are now more important than acting ability when it comes to race, sexuality, gender and so on. Denise Gough has given testimony ahead of this run – how as a teenager she fled her native Wexford for London where she fell into homelessness, drug and alcohol abuse, and was the victim of grooming. She has told her story, with purpose, much as those people who experienced healing and deliverance gave their own account to the Early Church.

Drama at its heart has to be about telling a story and finding a universal truth. The gospels are full of this, with redemption and rehabilitation. Lives changed, sins forgiven, and a new future made possible. There is power in believing, and knowing that when someone might stumble and fall, it is not the end. In fact, it might just be the beginning.

People, Places & Things is on at the Trafalgar Theatre, Whitehall, London, SW1A 2DY, until 10 August 2024.