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.

Column

Change

Character

Psychology

23 May 2024

4 min read

Look out for the outliers

Seeing the good qualities in others lifts them, benefits us, and makes the world better.

Roger Bretherton

Roger is a Clinical and Coaching Psychologist.

A office worker wearing headphones looks out of a hectic and loud office space around which people are moving

Nick Jones/Midjourney.ai

I was talking to someone the other day. She is a website developer and she’s just changed jobs. She is not a loud person, but anyone who meets her knows she is a person of quality, of depth and presence. She emanates a humble confidence. In her old job, she worked in a quiet, fairly sedate, office where she was given the space and the time to bring all her creativity to bear on whatever brief she was given. She was known and appreciated.

But her new job – the job she started last week – is a bit different. Her new colleagues are loud and outspoken. Silence is unknown in their office. They like to work to a soundtrack. The drum and bass keep thumping, and the banter never stops flowing. She’s finding it hard to fit in with her new team. And things weren’t made any easier when, after a few days, her new boss took her aside for a pep talk.

What was the problem? She was ‘too quiet’.

It hurt to hear that. It broke my heart to think that anyone could be so blind. How shortsighted do you have to be, to view the grace and peace someone carries as a problem to be solved? In a world of distressing noise and clamour, she is precisely the kind of person every office needs to temper the insanity.

I’m not worried about her. She’s bright and innovative. She’ll work it out. Either her new boss will see sense, or she’ll leave. And if she does, the queue of employers looking for someone just like her stretches round the block. She’ll be okay.

But it got me thinking about the kind of psychology I study. In my research, she would be called an outlier. One of those people in a team or a family who don’t quite fit in. Not because they are weird or awkward, but because they possess some positive quality the rest of the gang don’t have. They are the creative exuberant in a team who prefer doing things by the book. The hilarious joker in a pack who like to take things seriously. The conscientious worker trying to get on with the job in an office that would rather play now and work later. The kind one in a family of cutthroat competitors.

At the top of the list of reasons for wanting to leave work are the words: I am not appreciated.

The thing is we all have a unique contribution to make to the world, a one-off fingerprint of strengths and abilities never to be repeated in anyone else. In research these have been called Signature Strengths, the unique combination of positive qualities that make you you. And the weird thing is that we don’t have to try that hard to be them. If you are naturally kind, or wise, or grateful, or disciplined you won’t be able to stop yourself being that way. They come effortlessly to us. And if someone tries to stop us being the loving thoughtful faithful person we know ourselves to be, it is like losing a limb. If we find ourselves in a context where the most beautiful things about us are unwelcome – like my friend the website developer – it is like being rejected, right to the core.

But here’s the cool thing. If we can live by our Signature Strengths – if we can wake up each morning and ask the question, how can I use my unique positive qualities in a new way today? – it leads to remarkable improvements in wellbeing. Multiple studies have shown that those who live like this, thinking about how they can bring what is best in them to the opportunities and obstacles of each day, report increased happiness in living. Not only that, but they also show reduced anxiety, stress and depression. It turns out being good is good for us. Who knew.

That’s not the whole story though. To really be our best, we need other people to spot these strengths in us. If they don’t, we feel confined, unable to be ourselves in some way. When I ask people what it is like not to be able to bring their best qualities to the people around them, they come up with some pretty dark images. It is lonely, isolating, a desert, a fog, a prison, like being trapped in a cage. And when researchers ask people why they consider leaving their current job, their answers often reflect something like this. Work-life balance and salary are no doubt important, but often, at the top of the list of reasons for wanting to leave work are the words: I am not appreciated. Something good we wanted to give has not been received. We feel unseen.

So that’s why I say: look out for the outliers. Who is it in your family, your workplace, your neighbourhood, who goes underappreciated? Who do you know who has something good to give, but needs some help to give it? Because if we can learn to see those invisible beautiful qualities in the people around us, we not only give them the joy of being known, we also invite more light and flavour into the world. Life becomes a little less grey.

I just hope my friend’s new boss can learn this while he still has the chance. It is tough for her to feel so misunderstood, but it’s worse for him. She can move on, but he has to remain in an office deprived of the humble compassion she would have brought to it. It’s a question worth asking. What gift of beauty and goodness are we excluding from the world because we failed to see past the packaging?