Autistic people and the fear of death

The other day I made a TikTok video about Autistic people and sleep. It proved very popular, and at the time of writing is getting close to 13.5k views.

Video of David Gray-Hammond of Emergent Divergence. He is a white male of Mediterranean descent in his early 30’s. He is talking about how Autistic people may chose to stay up at night because there are fewer demands, less sensory input, and they can finally be at peace after a long day.

The video got many comments, but one thread in particular took my attention. In it, people were discussing how they struggle to sleep due to a fear of dying.

This struck a chord with me.

I have several co-occurring mental health conditions, and I have learnt through years of therapy that they boil down to a fear of dying. I regularly spend my time in bed having an existential crisis.

This led me to wonder, why might Autistic people experience an intense fear of death? I took to the Internet.

Sadly, the research in this area seems to mainly turn up results of studies looking at the fears of parents of Autistic people regarding what will happen to their child in the event of their death. I kept looking, and suddenly it clicked into place.

Autistic people experience an intense fear of dying, I believe, because everything and everyone tells us that we are not meant to survive. Dying is an ever present risk.

The suicide rate for Autistic people is dramatically higher than the general population. Our life expectancy is dramatically earlier, with some research studies placing it in our mid 30’s. Filicide is an ever present danger for Autistic children. Violent hate crime means that even after we leave the home, others mean us harm.

The world is not designed for us to survive and thrive.

When you know that dying isn’t just something that happens to the elderly; when you are reminded by everything and everyone that your days are numbered, one might be forgiven for experiencing the odd existential crisis.

Perhaps we can help Autistic people have a better night’s sleep by creating a world where we can live without fear of premature death.

This won’t be an easy task, the world is horrific for Autistic people. In the article series* I am co-authoring with Tanya Adkin, we explore what leads to negative outcomes for Autistic people and how we can redesign society to better accommodate the Autistic neurotype.

It will not be an easy task.

Autistic people deserve to live without the fear of premature death. Easy or not, we owe it to ourselves to keep advocating for a world where it is safe to be Autistic.

*The article series in question can be found at emergentdivergence.com, we currently have articles on trauma, failures in identification, and ableism and discrimination. There is also a podcast on spotify.

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13 Responses

  1. Interesting article. At 58 years old, I find myself thinking about my own death fairly regularly, and having depression/PTSD makes me wish for it sometimes, which causes further distress. The point you make about the world not being meant for autists (me included) to survive and thrive is spot on. Like you, I have many days, most it seems, in which I retreat to bed because the existential pain is too great. This is why we have such a high suicide rate. Life is more often than not simply too much to handle.

  2. Powerful article! I agree with your thinking here, David. In general, I do believe that Autistic people fear death ~ as you’ve pointed out ~ for good reason.

    In my particular instance, I am at peace with death. I have no fear of it anymore. There have been too many moments where I have faced it and survived for me to carry anything but acceptance for when the moment arises, under whatever circumstances.

    I wrestled death as a newborn for almost four months, in an incubator, alone and with minimal human contact and with a heart that was incompletely formed. I almost drowned when I was three. As a teenager, I had open-heart surgery. In my 20s, I was in a near-fatal car accident. There have been so many more instances where death and I met and death took a pass on me.

    Recently, as I rounded my 50th year ~ a fortunate elder, in Autistic years, as you yourself are ~ I had waking epiphanies of being able to be completely immersed, in a holistic way, in what it would be like to finally succumb to death and exit this skin suit. Those realizations were fascinating rehearsals. They were not at all frightening, though.

    So, I feel lucky. I feel lucky to have lived this long despite existing at the intersection of several identities that carry with them a short life-expectancy. I feel lucky to have had occasion to dance with death and walk away from the waltz. I feel extremely lucky to sleep well at night, and easily.

    I wish the same for all of my Autistic kin.

  3. Agreed. I think about death daily, at least once or twice. I’m 52 now and for most of my life it was coupled with constant suicidal ideation. Nowadays it’s more of a curiosity and a sense of doing what I can before the inevitable happens. We should talk about death more as a society. Its not healthy not to. Great article.

  4. Where is the evidence of shorter lifespans for all types of autistics? Surely it’s the ones with coexisting serious physically limiting health troubles. Isaac Newton lived to 85

      1. Yep, “and part of it is definitely comorbidities:” have long had a few of those with known lifespan shortening properties going on yet at nearly 60 I’m still here.
        My parents turned 81 this year. Dad has several service-connected disabilities but his disabled mom lived to be 93, his dad about a decade less. Mom, diabetic, had both a stroke and brain aneurism in 2018; then tested positive and a few days later not positive for covid last year, so which test was the wrong one? Her father was diabetic and died in the 1970s but her mom lived in to the 1990s. Who knows what effect my comorbidities are going to have on me, at this point it would be merely an exercise in speculation.

  5. i guess I’m one of the rare ones among our Autistic clan, who doesnt have worries about death. i have had two or three close shaves with danger, but the thought of dying at the times never entered my head – at least no worry at all. all my life it never troubled me. I’m now 86 and find no concern about the matter. for that matter though coming from a close affectionate family, i was never troubled by the death or potential death of anyone related to me. it was all one of the big things that made me search for answers about myself and led to my Aspergers diagnosis. i just could never understand the nature of grief in relation to human mortality. oh i have to confess that i feel a degree of grief at the death of any of my beloved cats. i can say without fear of self deceit that i am not in any sense going through some denial process. anyway the subject is clearly very important since so many of our clan do have these worries.

  6. “The world is not designed for ‘us.'”
    I have yet to see evidence that God designed the world just for some people.

    1. The world, in this context, means the commons, means society, means the material world and its social systems, as made by the neuromajority to suit them and their way of thinking, being, doing. God has nothing to do with it.

  7. My slice of autistic life has experienced this preoccupation as well. I see it as an extension of the overall safety focus that I have. As a PDAer, I try to know or control my environment so as to keep my anxiety in check. No control, no safety. I want rules followed so that I know what to expect. A lack of people following rules means no safety and a fight or flight response. If that innate fight or flight response evolved from survival instincts, and I have that response sometimes all day, I would think the counterpoint of NOT surviving would be in my thought processes as well. Thanks for the article.

  8. It’s quite rare an article snags my attention and this one is excellent. For me it’s the reverse where I do not fear death but being forgotten and those I’d leave behind. I’ve made my piece with a shorter life span but only due to CPTSD and many forms of trauma. Perhaps because I’m late diagnosed as an Autistic person ? But this very much rings true for so many people and in that, exemplifies the need to change this society from what it is to one that better understands how to accept and support Autistic people.

  9. I am also terrified of dying. Scared of it coming too soon. Scared of the pain. Scared of it taking too long. Scared of what’s next. It’s caused extreme nightmares and anxiety, something I have to work on regularly.

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