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.  

Column
Change
Death & life
6 min read

The really annoying thing about dying

In his first Notes from Solitude, the death of his dad causes Roger Bretherton to reflect on the relationship and the strange emergence of 'father’.
A pocket watch rests next to a black and white photograph of a father lying beside a new born baby.
Photo by Anne Nygård on Unsplash.

The death of my dad was sudden and unexpected. I don’t know why it is that, from the moment he died, I have had to fight the almost irresistible urge to refer to him as father- a term of address I never used about him or to him during his life.  

Perhaps in some psychotherapy session at some point my therapist referred to my ‘father’, and I may have followed suit. And maybe occasionally when socialising with those who seemed a cut above my largely lower-middle class background, I called him father so as to avoid the flat northern vowel sounds that would expose me as an interloper. But that was just to fit in- on all other occasions he was decidedly not father and definitely just good old plain, dad.  

At death he became a classic, a museum piece, a part of history, not the dad who taught me how to ride a bike.

But for some reason the moment he died, it felt like dad wasn’t enough. I now had to call him father - those were the rules. At death he became a classic, a museum piece, a part of history, not the dad who taught me how to ride a bike by panting and sweating my five-year old self round the block, but the father who taught me to be… a man, or something like that.  

The F-word has gravitas, presence, authority. Dads are human, often bewildered, occasionally pissed off, eminently huggable, easily taken for granted - just there. Admittedly, Freud would have lost significant gravitas if oedipal theory had considered common-all-garden dads and not cigar-smoking brandy-swilling fathers. And no doubt the climactic scene of The Empire Strikes Back would have lacked considerable pathos had Darth Vader casually quipped, ‘No Luke, I’m your’re Dad’.  

The curse of the martyr, write Albert Camus, was to have other people tell their story. The principle doesn’t just apply to martyrs, it’s true of all those who die. To be dead is to become a character in other people’s anecdotes. That’s the really annoying thing about dying, we become a topic of gossip, people get to talk about us without the courtesy of ever having to talk to us. We become object, no longer subject. I think that’s why I resist calling my late Dad, Father. It objectifies him, makes of him something that he wasn’t. It, most definitely fails to do justice to all that he meant to me. 

She simply said, ‘It’s your Dad’, and held me tight in a hug that lasted longer than usually permitted in polite company. 

I say he died suddenly. It was a Sunday morning. I was in church at the time. Actually, worse than that, I was on stage speaking to a church. As a psychologist working in academia, I teach and train all kinds of people in every kind of organisation imaginable, but every now and then I get to speak in churches.  

On this occasion I was talking about character, the positive qualities of being – like love, gratitude, hope, wisdom and so on – that make life worth living. When I stepped off the stage my wife was waving to me from the back of the room, which was weird given that we don’t go to that church and she hadn’t come with me. When I wandered to the back of the auditorium wearing my ‘what are you doing here?’ face, she simply said, ‘It’s your Dad’, and held me tight in a hug that lasted longer than usually permitted in polite company. For someone who prides himself on social insight, it shames me to say that it took a while for the penny to drop. We were in the car with the engine running before it finally dawned on me what she meant. 

I try not to make too much of divine timings or fate, but there was something odd in the timing of getting that news. In that month I had addressed church congregations three Sundays in a row- which, as someone who is generally lazy and prefers not to work weekends, is an unusually intense frequency. But over three successive Sundays I had reflected aloud with those congregations that there were prayers that had accompanied the various stages of my life. Prayers that I found myself praying, almost as if they were prayed through me, as if they had chosen me rather than I they.  

In my twenties I had found myself praying as regularly as a heartbeat, ‘God do whatever you need to do with me, to make me into the person you would like me to be.’ It was a radical invitation for God to put me through whatever was needed to become who I was meant to be. But then the prayer faded. Its visit was over, it had done its work and it moved on. But as I addressed the congregations on those three Sundays I mused aloud that while the prayer of my twenties had departed decades before, I found a new prayer stirring in my forties. Now as the father of teenage boys, my new prayer was, ‘God do whatever you need to do with me to make me the father you would like me to be.’  

In the weeks that followed, people asked me whether I had had a good relationship with my dad. The most accurately answer was: we had the best relationship of which we were both capable. We both tried in our own ways to deepen our connection, but we were like the lovers in a romantic comedy; we always managed to miss each other. When he tried with me, I didn’t want to know. For several years, he left a book lying around at home that he wanted me to read. I never saw anyone touch it, but it moved around the house under its own steam. It was by my bedside, in the toilet, on the dining room table…  Macavity the Mystery Cat would have been proud. It was called, Things We Wish We Had Said. We may have wished, but we didn’t say. I never read it. Years later, when I tried with him, he was too flustered to respond. Both of us in our own ways lacked the courage to connect any deeper. But I was never in any doubt that he loved me, and I him. 

When he was alive I was most aware of how different we were. I defined myself in opposition to whatever he was. If he was gentle, I was assertive. If he was indecisive, I was ambitious.

He died of a heart attack on a Sunday morning asleep in bed, while my Mum was at church. Almost immediately his absence prompted a profound change of consciousness in me. When he was alive I was most aware of how different we were. I defined myself in opposition to whatever he was. If he was gentle, I was assertive. If he was indecisive, I was ambitious. If he was inexpressive, I was articulate. If he was like that, I was like this. And yet, almost at the very moment of his death, a reversal of awareness occurred. I started to see just how very much like him I was. His gentleness, his uncertainty, his scepticism, his care, his humour, were all mine. 

There is a rule in family therapy, that adult children relating to their parents should set their expectations to zero. We never truly see our parents until we stop viewing them through the lens of our own desires; what we wanted from them but never got. Until we do that our lives don’t really work, we sit around waiting for an impossible transformation, a payday that never comes, the moment our parents become exactly how we would like them to be, not as they are. For me, that moment of acceptance for dad only came when he was gone, I accepted him as he was when there was nothing left to accept. I don’t write this with any great sense of guilt or regret at opportunities lost, more with a sense of gratitude for what was given but often taken for granted.  

Oddly though, in the shadow of that seismic shift in my interior furniture, I detected the stirrings of an answer to my own prayer to be a better father. No longer compelled to define myself in contrast to what he was, I was freed to be what I was- both like and unlike him, and to be fair, more like him than I cared to admit. At some visceral level I came to appreciate how much of myself originated with him. I came to accept myself as a dad and my dad as a father.