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

Film & TV

Psychology

4 September 2024

5 min read

Who’s missing from Inside Out’s internal family?

Where Riley’s writers could go next.

Henna Cundill

Henna is a researcher with the Centre for Autism and Theology at the University of Aberdeen.

Cartoon characters of emotions at a control desk.

Inside Riley's head.

Disney.

Once upon a time a man got angry. Then he got angry at himself for the fact that he got angry, which of course didn’t help. As the Buddhist monk Thich Nhat Hanh would say, “If we become angry at our anger, then we will have two angers at the same time.” Similarly, there was an occasion when he got really nervous that he might make a mess of giving a speech, and his nerves became so overwhelming that he delivered the speech badly. A self-fulfilling prophecy, one might say.

These are not my examples; they are examples given by psychologist Richard Schwartz in his introduction to Internal Family Systems (IFS). This therapy (sometimes also called “parts therapy”) is a form of self-analysis in which participants learn to resist supressing or controlling their difficult thoughts or emotions, the different “parts” of their inner world, and instead adopt a posture of curiosity towards each of them. This posture allows people to be in a beneficial relationship to their emotional lives, rather than being ruled by them.

Fundamentally, the relationship that emerges is one of compassion, understanding that our thoughts and emotions have a job to do, even the uncomfortable or shameful ones. So, anxiety, for example, guards us from committing social faux pas, whilst joy helps us to keep hold of a sense that life is ultimately worth the living, no matter how hard things get. Even sadness and grief, as much as we fear being overtaken by such emotions, have an important role to play, for example by helping us to define what things and people are most valuable and important to us.

For those who haven’t seen the Inside Out films, the writers cleverly take this idea of the “internal family” of emotions and create five relatable characters that embody them – Joy, Fear, Sadness, Anger and Disgust. In the first film, we see how these characters interact inside the head of a little girl called Riley. They are helping her to hang on to her sense of self despite the upheaval she experiences in her outside world, when her family relocate to a new city, and she must settle in to a new home and school. In the sequel, we rejoin Riley as she enters the turmoil of puberty, and the five initial characters are abruptly forced to work alongside some new arrivals – the “teenage” crew of emotions: Anxiety, Ennui, Envy, and… the biggie… Embarrassment.

This Self is transpersonal – it exceeds the boundaries of who we each are as an individual person and connects us to something large.

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When he first developed IFS in the 1980s, Richard Schwartz was, by his own confession, a committed atheist, with what he describes as “a distain for religion”. Schwartz writes of the frustration he felt at that time when several Christians got excited about IFS in its early stages of development. His peer, Robert Harris, even went so far as to publish a book that set out a Christian version of the therapy. Initially, Schwartz felt the biggie – embarrassment – that his therapy was being taken up by Christians. However, as time went on, and as much as Schwartz tried to push aside the spiritual dimension of IFS, he increasingly found that spirituality could not be eliminated from the picture:

“As I used the model with clients through the eighties and nineties, increasingly they began having what can only be described as spiritual experiences. These vicarious encounters with the mystical profoundly affected my own spirituality and I became interested in Buddhism, Hinduism, Taoism, shamanism, Kabala – everything but Christianity.”

Over time, Schwartz’s antipathy to the relationship between IFS and Christianity began to wane. He saw how much he had been working on the basis of prejudice, limiting his own exploration of Christian ideas in response to some unhelpful encounters he’d had with a few heavy-handed fundamentalists. He made deliberate moves to engage with Christian dialogue partners across the breadth of the tradition and began to see how congruent IFS was with the teaching of Jesus. The posture of curious compassion towards oppressive and uncomfortable emotions that Schwartz was encouraging his clients to adopt was mirrored perfectly in the attitude that Jesus advocated towards “enemies” in the outside world: do not judge, instead seek to engage them with kindness, and work towards their healing.

In recent decades, Schwartz has come to rethink IFS as an integration of psychology and spirituality, rather than as a form of psychotherapy. He speaks of “spirituality” as an innate essence at the core of each person, which he calls the “Self”, and acknowledges that many of his more religious students prefer to think of this essence as “the soul” or “Atman” (the eternal self within Hinduism). And, whilst he still describes himself as fundamentally agnostic and is wary of making his own definitive religious commitments, he has come to agree that this Self is transpersonal – it exceeds the boundaries of who we each are as an individual person and connects us to something larger.

Screenwriting for a popular audience of all-faiths-and-none, it is perhaps unsurprising that the makers of Inside Out have thus far eschewed the deep and fascinating spirituality of IFS. Riley’s “sense of self” is at the centre of both films, but the way it is depicted implies that it is something that only comes into being at birth and exists entirely to regulate Riley’s engagement with the outside world. So far, there has been no exploration of more existential questions such as faith and eternity. However, the concept of the film is so brilliant, and for a complex idea it is so well executed, that I am sure we can look forward to many more Inside Out films to come. If that is the case, then just as Schwartz found himself going on an unexpected journey of spiritual exploration, the writers of Riley’s may well find themselves doing the same. I, for one, look forward to finding out what Riley discovers.