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

Psychology

27 August 2024

5 min read

Recovery came softly

A vision of grace amid an eating disorder.

From Mockingbird

Mockingbird is an organization devoted to “connecting the Christian faith with the realities of everyday life."

Under a tree, backlit by a sun set, two people sit in chairs outside and talk.

Harli Marten on Unsplash.

This article, by Lindsay Holifield, first appeared in Mockingbird. Published by kind permission.

I turned sixteen years old in a lavender-walled bedroom on the eating disorder unit at Texas Children’s Hospital. Surrounded by eagle-eyed nurses watching my every move and whirring machines keeping me alive, I quietly transitioned to Sweet Sixteen. The unit’s charge nurse was a gruff woman named Lupe, and despite her job, she did not particularly like children. But it was my birthday, and in an uncharacteristic act of kindness, Lupe offered me a slice of cake. She must have briefly forgotten her surroundings, because I was not a normal teenager. I was a patient on a pediatric eating disorder unit, and I broke down sobbing at the mere thought of such a high-calorie food entering my body.

This was my first birthday in a clinical treatment facility for anorexia, but it would not be the last. After receiving the initial diagnosis of anorexia nervosa as a teenager, the doctor’s pronouncement sounding like a death-knell at the time, I would admit to twenty treatment facilities on separate occasions across a period of fourteen years.

The treatment staff began to greet me knowingly when I would re-admit after only a few months out, as though I was an old friend returning from vacation. “Welcome back, Lindsay,” they would say, as they took my luggage and inserted yet another nasogastric feeding tube. Over time, I began to be labeled “chronic,” and I internalized a belief that I was one of the sufferers who was fated to live the rest of my life under the oppressive weight of this struggle.

I would have to try harder. I would have to pull myself up by my bootstraps and willpower my way into recovery. After each attempt under this approach, I would fall flat on my face.

It seemed that no matter how much motivation I mustered up, this internal drive to self-destruct would not leave me alone. I desperately wanted to wake up each day without having to submit afresh to the hellish existence of self-starvation and running till my lungs felt on the verge of collapse. But I felt chained to this destructive cycle deep into my bones, despite my best intentions.

I was often berated by various treatment providers for not having enough motivation. I didn’t necessarily want to die, but I could not find the strength within me to fight off the voice in my brain that demanded self-destruction. Doctors and mental health clinicians made it clear that if I really wanted to get better, I would have to try harder. I would have to pull myself up by my bootstraps and willpower my way into recovery. After each attempt under this approach, I would fall flat on my face. The despair of my situation began to swallow me whole: there was no way out, because I could not yell at myself enough to make myself well.

Because of the lavish softness I was shown, I began to approach myself with greater softness.

I was twenty-six years old, and I was sitting in a green folding chair in the summer on a farm in Nashville, Tennessee. The woman in the folding chair across from me is decidedly in support of my recovery, but she isn’t yelling at me or giving me a stern lecture. Instead, she is explaining with great care and tenderness how much sense my struggles make in light of my previous life experiences. “Perhaps,” she says gently, “your brain was trying to survive great pain. Perhaps you were simply trying to make the ache go away the best way you knew how.” Her compassionate words break something open within me, and I start weep like a small child. No one has ever approached me with compassion like this; they are all afraid being too soft will simply enable me to further harm my body. But they are wrong. It is precisely this compassion and sense of being witnessed that softens my armored heart.

Recovery did not come overnight, but I can unhesitatingly say that the compassion of a woman on that farm in Nashville is what radically changed the trajectory of my life. Because of the lavish softness I was shown, I began to approach myself with greater softness. The voice of condemnation quieted, and I slowly turned from self-destruction to life.

Do you not hear the gospel ringing out here? My story of recovery is simply a zoomed in image of the grander story, the beautiful truth that makes up the fabric of our existence. Admitting powerlessness to destructive forces of sin and death is important, but the condemnation of the law will not save us. It is the extravagant, one-way grace of God that resurrects the dead.

I have heard similar fears in faith communities that I continually hear in my recovery communities: if we are too extravagant with compassion, we are enabling sin and destructive behaviors. But I am a living testament that compassion is what softens hearts of stone, armored up by self-protection and attempting to earn love through behavioral perfection. I would have died many times over save for the compassion that chased me down and embraced me, and being held in such tender kindness was the only thing that could have changed my fate. I believe this for mental health, yes, but more importantly, I believe this for the rescue of all of humanity. The grace of God is the sole agent of resurrection and change.

To the surprise of those who cling tightly to rigid, white-knuckling versions of recovery, my behavioral change occurred only after I was met with a grace without strings attached. This should not be surprising to Christians, however. Here again, the gospel glaring back at us, that repentance is a response to the kindness of God. This is the God who loved us while we were dead in our sins, while we were powerless to the forces of the world, the flesh, and the devil. Against our behavior-driven moral sensibilities, God offers us grace that is a free gift, compassion in its fullest expression, and it is the only thing that will bring renewal and healing to the inhabitants of this desperately aching world: minds, hearts, and bodies included.