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.
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.
He has extensive experience of educational consultancy with both organisations and individuals.
He runs Emergent Divergence which can be found on multiple social media platforms, and is a regular educator and presenter on Aucademy.
He is co-author of the "Creating Autistic Suffering" series, found on his website emergentdivergence.com, and is also a published poet.
To make contact about his consultancy and mentoring services, visit http://www.dghneurodivergentconsultancy.co.uk
- Neuroqueering the future: an Interview with Dr. Nick Walker- author of Neuroqueer Heresies - January 26, 2022
- Autistic people and the fear of death - November 25, 2021
- Integrating autistic culture into the world: The cultural model of autism - June 1, 2021
29 Responses
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.
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.
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.
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
This article on the NIH site might help explain why autists tend to die earlier, and part of it is definitely comorbidities: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6713622/
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.
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.
“The world is not designed for ‘us.'”
I have yet to see evidence that God designed the world just for some people.
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.
Yes, I was referring to the systems of man, not to God in any way.
You are obviously not Autistic. You know absolutely nothing about Autism and it’s inherent neurologically based Sensory Integration and Processing difficulties that we face.
I am Autistic and Formally Diagnosed.
My Autistic hypersensitivities to light are so severe that I cannot drive on days when the sun was is out.
In the Book of Genesis 1:3 God said, “Let there be light: and there was light.”
There is your evidence. The light that God made is unbearably, undeniably, and inarguably too bright for this, and many other Autistics. THAT is the IMMUTABLE TRUTH.
And what about the Blind? If you think this Earth was made for the Blind, then you as ignorant as you are arrogant.
How can you be so obtuse?
Keira Fulton-Lees
Artfully Autistic Advocate for Autism
Owner of the Medium Publication –
Artfully Autistic and Neurodiverse Writers – In our own Words
https://medium.com/artfullyautistic
Not-So-Nicieman,
You are obviously not Autistic. You know absolutely nothing about Autism and it’s inherent neurologically based Sensory Integration and Processing difficulties that we face.
I am Autistic and Formally Diagnosed.
My Autistic hypersensitivities to light are so severe that I cannot drive on days when the sun was is out.
In the Book of Genesis 1:3 God said, “Let there be light: and there was light.”
There is your evidence. The light that God made is unbearably, undeniably, and inarguably too bright for this, and many other Autistics. THAT is the IMMUTABLE TRUTH.
And what about the Blind? If you think this Earth was made for the Blind, then you as ignorant as you are arrogant.
How can you be so obtuse?
Keira Fulton-Lees
Artfully Autistic Advocate for Autism
Owner of the Medium Publication –
Artfully Autistic and Neurodiverse Writers – In our own Words
https://medium.com/artfullyautistic
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.
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.
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.
Been Thanatophobic since age 5 (at the latest) — ever since I learned about Death. It does not help that I remember an infinity of being not, and I don’t want to not be ever again.
Given that, the article was not quite what I expected, though the message is important anyway.
I’ve experienced the fear of the death of those I love since the death of my husband. His death made death a reality for me.
So we are on similar paths. However, I am 63, and only discovered my autism at 56. I DEFY all your statistics.
That’s all, thanks for the vote of confidence. I attribute most of my success to the fact that I DID’T KNOW I WAS autistic until age 56.
I think those who THINK they are disabled, ARE disabled.
What say you to that???
I think your comment is self-serving and harmful to others here. Good for you that you’re still alive at 63 after having been diagnosed only 7 years ago. I was diagnosed in my early 50s and I and 58 now. I am disabled for a number of reasons, not because I merely think that I am disabled.
Re: “I think those who THINK they are disabled, ARE disabled. What say you to that???” I say the available evidence indicates that you clearly have no shortfall of and no disability in the realms of pride and arrogance and that yours are quite fit and able.
Interesting article. I believe I am on the spectrum and my daughter is by confirmation on the spectrum. My whole life if I think about death a real event it will initiate a full blown screaming panic attack. She is afraid of death too. I have to conquer this to model healthier behavior.
I’m Thanatophobic since childhood but much worse in the last few years since I had a more severe period of mental illness. (I believe it was brought on by influenza B).
I’m not just scared of premature death, I’m scared of ageing, illness, helplessness in ageing etc and dying. I do believe our energy continues in some way but I don’t think anyone knows how, so it’s only slightly comforting.
I’m not afraid of dying. I’m afraid of living.
Keira Fulton-Lees
Artfully Autistic Advocate for Autism
Owner of the Medium Publication:
Artfully Autistic and Neurodiverse Writers – In our own Words
https://medium.com/artfullyautistic
This obsession is also present in my autism experience. As far as I’m concerned, it’s just another step in the direction of making sure everyone’s secure. To manage my anxiety, I use my PDA skills to become intimately familiar with, if not in charge of, my surroundings. When there is no one in charge, nobody is secure. That way, I know what to anticipate, and the rules need to be followed. When people don’t play by the rules, there is no peace of mind and the only option is to fight or go away. If the fight-or-flight reaction sprang from primitive survival mechanisms, as I believe it did, then the opposite idea—that of failing to survive—should be present in my mind at some point throughout the day. Much obliged for the article.
I didn’t have any expectations concerning that title, but the more I was astonished. The author did a great job. I spent a few minutes reading and checking the facts. Everything is very clear and understandable. I like posts that fill in your knowledge gaps. This one is of the sort.
You can find more of my writing at emergentdivergence.com
I have also written a book!
It would honestly be better if high support autistic people died, kids as well, unless they find a cure for it. I say this as a parent of 2 severely autistic toddlers, it is hell and the fact that they will never even be independent just makes it worse because the extra effort parenting them won’t even be worth it in the end. Euthanasia needs to be allowed in cases where there are severe mental and intellectual disabilities. It’s cruel on the caregiver expected to provide lifetime care, its cruel on the child who will never be able to thrive in a cut throat world, and its cruel on society who pay millions of dollars per year in costs of care for people who will never even be contributing members of society.
Sorry, not sorry, it had to be said
hard words there, but i do tend to go along with you. glad you said it.
Ron Hedgcock
author of Confessions of an Unashamed Asperger.
I am constantly worried about dying within my 30’s either through one flawed brain or flawed heart within the physical sense, if I were to try starting a serious relationship.🥺