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

Change

Death & life

Mental Health

Psychology

29 November 2024

4 min read

Letting go and welcoming in

Your new life will cost you your old one. It's OK.

Mica Gray

Mica Gray is a wellbeing practitioner working in adult mental health. She is training to be a counselling psychologist.

A family with a mother holding a small child, look up and to the left.

Eduardo Fernando on Unsplash.

Last week my family laid my great-grandmother to rest. A few hours afterwards, we celebrated my cousin's birthday.

It felt strange to go from a place of death to a place of life in the space of a day. One minute I was throwing flowers into the open grave of a woman whose earthly life has come to an end and the next I was in a restaurant handing flowers to a girl whose life as a woman is just beginning. The contrast was a bit surreal, but much of life is like that; beginnings and endings flowing into each other. The transition between the two events was made easier by the fact that the funeral did not really feel like one. In alignment with my great-grandmother’s spiritual beliefs, the ceremony was very simple. It was over in less than four hours and featured a short reading of spiritual texts and quiet, reverent reflection. There were no solemn looks, no songs of lament, no dirt shoveling, no loud wailing or aunties and uncles dancing to Beres Hammond at the reception. Instead, there was just the quiet nod of acknowledgement that her spirit has journeyed on.

Though I missed the eulogies and shared tears that usually detail funeral services, I appreciated the simplicity of the ceremony. I appreciated the way death was described as a transition of the spirit into a new kind of life, the way it was treated as something so normal. Which in fact it is. Death is happening around us every day yet as a society it is something that we struggle with - whether it’s the death of a loved one, a career, a relationship or a part of ourselves. Our attempts to curate eternity with anti-aging procedures and technological permanence betray how deeply uncomfortable we are with the inevitability of endings in our modern world.

And to be honest, of course we are. The loss of loved ones shakes entire worlds. Job losses throw our lives into instability and leave us feeling unsafe. The loss of youth and power challenges long held ideas of identity and invites existential anguish. Divorce carries with it its own special grief. The pain of these experiences makes it hard for us to embrace when things are ending in our lives and make it hard for us to let go, even when we need to.

And we do often need to.

What fears, habits, thoughts or behaviours need to be given to the earth? What cycles or patterns do we need to bury and mourn so that we can usher in new and better ways of being?

Lately I’ve been thinking about the saying ‘your new life will cost you your old one’ and how true that is in many areas of our lives. In my own life, I recently started a new role at work that has cost me the comfort of my old one. I have had to give old versions of myself to the ground and shed skin so that I can continue to grow into the space of it. This new year of doctoral study has cost me Saturdays spent lazing around with friends, new relationships have cost me old patterns of behaviour and new depth in old relationships have cost me pride and ego.

At each point of transition, I have been asked to leave something behind to experience something new and it seems like so many of us at the moment are being asked to do the same. People are moving houses, leaving jobs, leaving seats of power, churches, ending relationships, wrestling with friendships, forming new ones and experiencing ego-deaths.

Like my cousin, some people are exchanging adolescence for adulthood. Others, like my great-grandmother, are exchanging their earthly bodies for their spiritual ones.

In this moment individually, politically and spiritually - it seems like we’re collectively being asked the question: what are we needing to let go of? and then what do we need to welcome in? What fears, habits, thoughts or behaviours need to be given to the earth? What cycles or patterns do we need to bury and mourn so that we can usher in new and better ways of being?

When life asks us questions like this it can feel overwhelming or intimidating to confront, but it is always necessary. I have found that when you do not allow yourself to grow out of old skin you will suffocate within it. The times of transition that we find ourselves in ask us to trust that something greater is unfolding. They ask us not to resist change but to flow with it. Not to forsake the present or the future by holding on to what has gone to the grave, but to be open to what is next.

As strange as it was last week to celebrate a birthday after a funeral, it was a reminder that though endings are painful we can embrace them because they usher in new beginnings. It was a reminder that funeral clothes can be exchanged for dancing shoes and that mourning can be exchanged for joy.

Overall, the day was a reminder that if we make room for it, life can follow death, both in this earthly life, and into the next.

Selah.

This article was first published on Substack. Follow Mica there.