Since I returned home to New Zealand from my Dad’s-death-dash to the UK, I have never been so exhausted. It feels like a pregnancy level of complete lethargy, although I am not pregnant. Each morning I wake with a sore throat thinking I am coming down with a bug, but it always wears off quickly for the rest of the day. But the tiredness never leaves me.
Seeing as I have no other explanation for feeling this way, I can only assume this is grief, and my neurodivergent way of processing and assimilating my new fatherless state into my way of being moving forwards. As my Mum has told me, and despite her being newly widowed, “Life goes on, Sam”. She is right, of course. Life is going on for all of us, and I am grateful to be alive. Yet this exhaustion is akin to other states I go through in everyday autistic life.
I would love to know how these all sit with your experience of grief, bereavement, shutdowns, meltdowns, apathy and autistic inertia.
Autistic shutdowns
I am overloaded. Stop the input.
I can not take any more demands.
External demands: eye contact, conversation, scheduled obligations, appointments, refereeing arguments, playing with children, reading aloud, preparing snacks and meals, co-regulating others.
Internal demands: hunger, toileting needs, coping with pain, periods/menstrual diarrhoea and messiness, thirst, tiredness, regulating my temperature, regulating my emotions, and social masking.
I may curl up in a ball on the floor. I want to be hidden under a rock alone where nobody can reach me. (Generally there are no rocks available, plus I don’t necessarily wish to be crushed to death…)
I may plug my fingers into my ears, face covered by my clothes or a blanket, eyes shut tight. I block everything out and try to calm my breathing into a slow and soothing rhythm.
I may be rocking, swaying, pacing, flapping, crying, wringing my hands, clicking my fingers, slapping my head or some other stimming action to try and distract/alleviate the feeling of overwhelm.
Escape people. Get home. Be psychologically and emotionally safe using weighted blankets, heating and heat pads. Drape cats across my body.
If a shutdown approaches when outside, I have been known to use a kids’ swing to propel myself with all my energy for as long as it takes to feel regulated.
Shutdowns are a finite state and they must be respected. I lean into them and never avoid them. I will tell whoever is with me that I am approaching a shutdown. I respect it.
Shutdowns are a self-preservation mechanism for me. I need to go through the process for my own emotional safety, to be regulated, and to restore equilibrium.
When things at home are too much, and I can sense an intense period of autistic shutdown is in process, I let my husband know that I need respite as soon as possible, in whatever form that needs to take. This is often cyclical, although not having periods currently in my perimenopause due to my Mirena intrauterine device (IUD) stopping my bleeding, this is no longer predictable according to my menstrual cycles.
Autistic meltdowns
Fortunately I am not prone to meltdowns since becoming a mother, which is just as well as they are terrifying to experience first hand.
I can sense the pressure building up towards a meltdown and it feels like an explosion is about to take place from my core.
When autistic shutdowns are prevented, it can cause me to have a meltdown, as I have been unable to regulate myself as needed.
Sometimes during a shutdown it feels like I am going to convulse, which is a sign of an impending meltdown, necessitating me to dig deeper into regulating through the shutdown.
There is too much light, too much noise, too many people, overwhelming smells, I may be lost or late, someone has turned up at my house and I can not cope with everyone being there and talking to me. People want more from me than I have the capacity to give.
Things often get broken during a meltdown. Things can be expensive, so I am glad meltdowns are rare for me since I am better regulated these days. The household is also low demand for my autistic ADHD kids, so their meltdowns are fewer these days too. This is a good thing, since their meltdowns and supporting them through recovery usually sends me into a shutdown. We are all hypersensitive to others’ emotions and I am a deep empath.
Now that I can predict a meltdown in myself, I am able to defer it into a shutdown when the circumstances are favourable. But shutdowns can be hours to days long, and may resemble burnout, whereas a meltdown is a short sharp catastrophic family event, regardless of who is having it!
Autistic inertia
This is what I have been feeling a lot this week, which I am guessing is a part of my grief and processing: I have been completely numb and devoid of all emotion.
Inertia can be the lasting effect of a shutdown. Once I unplug my ears, uncover my eyes and emerge into the light, it may still all be too much to bear.
I can see and hear the world in real time, but my processing time lags and I am numbly dissociated from my environment and the people within it.
I experience no feelings whatsoever. No joy or anything. I have experienced this when my SSRI/antidepressants/anti anxiety medication doses are that of a neurotypical dose. I need them to be an eighth, a quarter, a half but rarely a full dose.
I do not want to do anything. I can not do anything. I can not will myself to move/write/eat/talk/go to the toilet/sleep. All I can do is nothing. I am numb.
When I am experiencing inertia, I know it is temporary. I know what it is when I am in it. I do not feel guilty for doing nothing or needing more supports than usual. I give myself full permission to do absolutely nothing and, when I can’t move, I can’t move, so I make no attempts to move.
Until I want to move, but I can’t move. So I ask for help. “Pull me off the sofa.” “Help me go to bed.” As with inertia as a basic law of physics, in autistic inertia, I can not move unless another force acts upon me. Namely my husband, helping me physically out of this psychological state when I ask for help. I just need a hand to get off the sofa and then I am back in motion. Recalibrated. Equilibrium. (I hope my old school science teachers aren’t reading this as I am just throwing in physics jargon willy nilly now.)
Since my Dad died, I have been in inertia a lot in the afternoons and evenings, once the demands of the day have drained me. Inertia may also be related to depression and autistic burnout.
Autistic apathy
Stop the world, I want to get off!
This is generally born of frustration, and a general feeling of being totally fed up with existing in a neurotypical world.
Nothing is created for me to succeed. I don’t belong here. Why should I keep trying? What’s the point?
I give up, I am sick of this shit.
Fuck it all. This is bullshit. This world is not for me…
I am now wondering how big or small a jump it is from apathy to suicidality? This is especially concerning for people who are particularly impulsive. ADHDers are at particular risk of suicide as we think so rapidly, without taking time to rationalise it or think of the consequences. Stimulant medication for ADHD is the most immediately effective medication in all of psychiatry, according to something I heard Dr Russell Barkley and/or Dr Ed Hallowell say once. I would fact check that but fuck it all, this is bullshit. I am too tired to fact check my sources. Sorry.
Honestly, I am so fatigued.
In terms of how we move through these different states as autistics and with other neurodivergences, we need to know that they serve a purpose in keeping us safe and regulated. They may not be pleasant, but they are necessary.
We are a wonderfully intense population and we will feel intensities in emotions. We need to create space for getting a break from that using shutdowns, meltdowns, inertia and even apathy.
We are deep empaths, so perhaps the advantage of apathy is that we just don’t care what anyone else thinks at that time. Perhaps it is a tool we should value as a part of our unmasking. Why must we always be the ones to care so much all the time? It is exhausting.
A good old shutdown can be grounding in that it draws you down into a slump until you are completely earthed. Maybe that is how we get the energy to rise again? We drop into the time, space and place and have no thoughts of our past nor our future. We can immerse ourselves in this visceral experience that is only for us at that time.
An autistic shutdown can be liberating and calibrating.
When you are going through a period of shutdown, meltdown, inertia or apathy, what can you learn from it? Were you too busy? Should you be cutting down on social occasions? Are you getting enough sleep? Enough time alone? I would love to know what your lessons have been during these trying times 💕
Hi Tina, I’m so sorry that you’ve lost your Dad too. Thanks for sharing your invaluable insights. Crying spontaneously is something I’ve done all through life before I was diagnosed autistic, anxious and ADHD. Now that I’m on an SSRI and stimulant medication, it’s not happened for a few years. It’s good to know I too can spontaneously have a cathartic sob as it’s all part of processing grief and loss 😢
Ahh, someone else who uses the term death-dash -👊 and is autistic. I relate to all you say. I don’t really do meltdowns, and on the rare occasions I have I have spent so much energy trying to control them, to hide them etc. I think maybe once or twice as an adult. Shutdowns are me, I go mute, am robotic, only move when necessary, can be lead around - if I’m not on the sofa or bed it is very much a going through the motions like I’m looking in from outside my body. I don’t know if I’ve learnt much, (v.late diagnosed) other than shutdowns aren’t me sulking, I’m not ‘being’ belligerent or rude or nasty, if fact I’m lucky to be ‘being’ at all. When my father died a couple of years ago, (our death dash didn’t make it in time) I found my shutdown to be longer and more profound, I’m not sure if I really properly grieved for him (a difficult relationship) unlike when my mother died 20 odd years ago. But I think for my mum I was in and out of meltdown and it was dealing with her death that required me to stop and be more shutdown like - I’m not explaining it at all well so I hope you understand.
Anyways, I hope you manage to grieve well and allow yourself this time.