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.  

Explainer
Change
Death & life
6 min read

Dealing with death – why the fuss?

“No fuss” cremations are getting more popular. Not giving a formal space or process to say goodbye feels like a seismic cultural shift to Jane Cacouris. Part of the How To Die Well series.

Jane Cacouris is a writer and consultant working in international development on environment, poverty and livelihood issues.

A sculpture shows mourning women raising hands and fists to the sky.
The Tragedy of the Sea memorial in Matosinhos, a Portuguese port.
Prilfish, CC BY 2.0, via Wikimedia Commons.

Widow’s Rip is a notorious swirl of ocean just offshore from Nazaré, a centuries-old fishing village on Portugal’s windy and unpredictable Atlantic coast. Decades ago fishermen used oxen to pull brightly painted boats onto the beach and then rowed into the giant waves. Many lost their lives when the seas were rough. I first visited Nazaré with my Portuguese grandmother as a child and stayed in a fisherwoman’s house with an orange-tiled roof just off the central square. My eyes had to adjust to the gloom every time we went inside as she kept all of the shutters drawn. Even though it was thirty degrees outside, I remember her tanned, crumpled face shrouded in a black shawl that covered her head and shoulders. She wore a black knee length skirt with an array of petticoats and black shoes. As a ten-year-old, I was a little scared. I asked my grandmother when the fisherwoman’s husband had died. “About twenty-five years ago at sea”, she said. She explained it would be a sign that you didn’t love your late husband if you didn’t wear black for the rest of your life.  

Nowadays, although fishing is still a livelihood for some who live there, Nazaré is known for its sweeping beach and touristy promenade of restaurants, bars and stalls selling Portuguese wares. But the widows, now very old ladies, who lost their husbands to the sea all those years ago still potter around the town dressed head to toe in black. An ingrained tradition of how to grieve.

No other event in our life brings us closer to facing questions of mortality and eternity than the death of a loved one.

Grief and how we deal with the loss of a loved one is of course deeply personal and expressed differently depending on so many things; culture, beliefs, personality, life experience, to name a few. But in recent years, there has been a defined shift in British society away from some of the traditions that have historically accompanied death.  

The growing trend for direct or “no fuss” cremations is an example of this shift, with a rise from 3 per cent of all cremations in 2019 to 18 per cent in 2022 according to a life insurance company’s recent report. A traditional cremation includes a service at the crematorium or place of worship beforehand, whereas a direct cremation does not have a service. Instead, the deceased is taken directly to be cremated with no one in attendance, unless witnesses ask to be present. A simple coffin is used, and the timing of the cremation is determined by the funeral director, usually according to availability.  

Why are families choosing to cut out the funeral?  

Sources point to a range of reasons. A matter of choice – perhaps a statement of faith that the afterlife is not about funeral rituals, or conversely, that there is no afterlife, and the body will just decompose organically and be subsumed back into the Earth so why make a fuss? It can be for practical reasons such as cost; traditional funeral services are much more expensive than a simple cremation, estimated to be approximately £2,500 cheaper. A “no fuss” cremation can also reduce the likelihood of family division or arguments over the type of ceremony. Or family living in different locations geographically means a memorial service scheduled for a more convenient time can be organised.  

All these reasons seem perfectly valid. But not giving a formal space or process to say goodbye does feel like a seismic cultural shift, even for the British, known for our ability to keep our feelings under wraps. Practical reasons aside, are we ducking the emotion that inevitably hits us when we lose someone we love? Or perhaps avoiding the difficult questions that come with death? No other event in our life brings us closer to facing questions of mortality and eternity than the death of a loved one.  

On holiday in Nazaré in his youth, my father remembers a fisherman’s death in the house where he was staying. The night before the funeral - with the deceased laid out in the dining room - each of the women in the family took it in turns to sit in the corridor outside, the top skirt of their seven petticoats over their head, wailing in an outpouring of grief so raw that they couldn’t continue for more than a couple of hours. The “wailing process” carried on throughout the night, the role passing from woman to woman until sunrise. Not only was the loss of the fisherman the loss of their beloved, it was also the loss of a working partnership - the women sold the fish that the men brought home – and the loss of the family’s livelihood and income. The wailing was a necessary part of expressing this agony ahead of the funeral service when the rest of the family would come together to support each other.  

There are also intensely reverent traditions observed with death in Portugal, particularly within the Catholic church. The burial or cremation is usually no more than three days after the person has died. When my grandmother passed away a few years ago, her body was laid in an open casket in a room of the Catholic church in the mountain village in rural Portugal where she had lived most of her life. The night before the funeral, a procession of people visited her to pay their last respects, including distant family members, whilst my immediate family sat with her all night. People touched her arm or hand, and sat and chatted to one another. After Mass the following day, her coffin lined with lead was sealed and she was taken to the family Mausoleum to be laid beside my grandfather, along with the remains of around thirty of our relatives dating back to the early 1900s.  

Brazil, where we lived for several years, has many similarities to Portugal in dealing with death. The time between death and burial or cremation is even faster, usually within twenty-four hours. Family and friends rapidly gather, usually together with the body of the loved one in an open casket. Touching and kissing the body and wailing over it is not uncommon. According to a Brazilian friend, “Bebendo do morto” which means “drinking to the dead” is an old custom where family members raise a final glass of Cachaça, a traditional drink, to the deceased in the presence of their body.  

A funeral service is partly about taking a look back at our loved one’s jigsaw of life, at all the pieces that have slotted together to make up their precious and unique time on Earth.

In all these traditions, the funeral service acts as the closure to the first “phase” of grief, and the passing of the deceased into God’s care. The next phase is then the more private continuation of grief for months or years to come.  

Christians believe in life after death based on a conviction that as Jesus rose from the dead, so will we. A funeral service is partly about taking a look back at our loved one’s jigsaw of life, at all the pieces that have slotted together to make up their precious and unique time on Earth. Of course, there are damaged and missing pieces, but Christians believe that the jigsaw will be made whole and perfect in Heaven with Jesus. It is also a chance to give thanks for the the life of a human being wonderfully and fearfully made in the image of God. 

Regardless of the country, the culture or the tradition, the death of someone we love means that our world will never be the same again. It will continue spinning without them and we have to get used to that. The Book of Ecclesiastes in the Bible says: 

 “There is a time for everything, and a season for every activity under the heavens: a time to be born and a time to die”.  

Death is an entire season; not only the end of the existence of a human on Earth who was created and loved by God, but a prolonged period of growth and change for those of us left behind.  

Death deserves us to make a fuss.