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
Assisted dying
Care
Comment
Easter
5 min read

I know who will be most affected by legalising assisted dying

Contemplating lent revives hard memories and raises fresh fears.

Ryan is an ordained Priest in the Church of England, currently serving in south London. 

A close up of a forehead bearing an ash cross marked on it.
Ahna Ziegler on Unsplash.

“What’s that - a face tattoo?” 

These were the words of one person as I walked past them on the streets on a recent Wednesday, with the ashes of last year’s burnt palm-branches placed across my forehead in the shape of the cross.  

The cross has been a symbol of hope for over two millennia; that even in the most painful of circumstances, darkness does not have the final say, including in death.  

As a society, we don’t really talk about death that much. Margot Robbie’s Barbie was the quintessential party-pooper when she pondered: 

 “do you guys ever think about dying?”. 

It’s no fun to dwell on death and dying, and for many of us, we put it off as long as we can. That all changed last year with the introduction of the assisted dying bill into the Houses of Parliament. Our national attention was, for a rare moment, captured by death.  

As a parish priest, I’ve seen the finality of burying someone into the ground. I’ve seen the sadness in the eyes of those trying to grieve. 

The words of Ash Wednesday, which remind us that we are ‘but dust, and to dust we shall return’ are echoed in the famous words that the priest recites in those last moments of burial, ‘ashes to ashes, dust to dust’. In that moment, amongst the bereaved, there is no escaping the inevitability of death. It is the ultimate statistic, 1 in 1 die. 

Whilst death is of course universal and will affect us all, the impact of this assisted dying bill could have consequences for some of the most vulnerable in society.  

As I reflect on my time as a Priest in East London, this is not abstract theory, but something I lived with each day. I served amongst a hugely diverse, vibrant, community in one of the poorest parts of the city. As I try to picture some the people I’ve walked alongside, I know it is these lives that will be most affected.  

One of the reasons I have concerns about the bill is the prospect of these people being coerced into ending their own lives prematurely, by a world that has already told them their lives are of little value. There are already huge disparities in access to the current provision of palliative care at the end of life, particularly amongst people of colour, the disabled and the poor.  

Of the 500,000 people who die each year, 100,000 do not access the care they need. This number is skewed towards ethnic minorities and those who come from poorer backgrounds.  

There is much confusion and misinformation about what end-of-life care even is. Research conducted by Marie Curie shows that 1 in 5 people from an ethnic minority background believe Palliative Care is actually Euthanasia.  

We only need to look at what has happened around the world when the ‘right to die’ becomes a duty to die. Even with the best of intentions, other jurisdictions show us that safeguards rapidly deteriorate and those who are already vulnerable become even more so.  

I worry that the way in which this bill is being handled - rushed through, little time being given to properly chew over the profound consequences it may have - reflects the wider way we view death. 

By trying to provide a ‘choice’ for a certain group of people, the consequence will be taking away real choice from those who already have little. 

Yet we know that for those who do access it, palliative care can be hugely effective in improving their quality of life, and for some, they can even outlive their prognosis. During Ash Wednesday’s service, I met an elderly gentleman who was diagnosed with stage four pancreatic cancer in 2019. He was told he had five months to live. He described every day of his six-year survival since as a ‘miracle’, his eyes filled with evident joy.  

Such a blessing stands in stark contrast to the lonely final days of my 96-year-old great grandmother. She was suddenly taken ill during the Covid-19 pandemic and was frantically rushed to a hospital. Amidst the chaos, exasperated by the restrictions against seeing family that were in place at the time, I distinctly remember confused conversations about placing her in a care home for her final days. It was clear she needed a lot of specialist attention, more than our family could provide ourselves.  As she was discharged to stay with our aunt, she never did reach that care home, as she died at home. She was buried in our local cemetery, with our family watching on Zoom.  

My final memory of my great-grandmother will be the FaceTime call we shared when she was taken to hospital, with the poor data connection and shaky picture. I am so grateful for the few family members who were able to be by her side when she died, but I’ve often wondered whether she fully received the care she actually needed during those final days, in the way she needed it.  

What my great-grandmother didn’t have a lot of at the end of her life was time.  

That’s also true for this bill. Concerns have been raised that only five hours of debate were given to this Bill in the chamber, comparatively short for a change in the law of this magnitude.  

I worry that the way in which this bill is being handled- rushed through, little time being given to properly chew over the profound consequences it may have- reflects the wider way we view death.  

Do we view death - and indeed the dying- as something to be shoved to one side, not spoken about in the hopes we can avoid its impact? Or do we view death as an important moment to review who and what matters most in life?  

Perhaps for some, the fact that Christians devote a period of 40 days to dwell on death may be one of the mysteries of faith. However, perhaps it’s not such a bad idea after all.  Death may bring with it fear, grief and pain and so we tend to avoid it. But do we risk missing out on much more? As we head into Easter, the cross still serves as a powerful reminder that, especially in death, Hope can be found, that Good has triumphed over evil, and Light shines even in the darkest of places.  

Celebrate our 2nd birthday!

Since March 2023, our readers have enjoyed over 1,000 articles. All for free. This is made possible through the generosity of our amazing community of supporters.
If you enjoy Seen & Unseen, would you consider making a gift towards our work?
Do so by joining Behind The Seen. Alongside other benefits, you’ll receive an extra fortnightly email from me sharing my reading and reflections on the ideas that are shaping our times.
Graham Tomlin
Editor-in-Chief