Written in May 2022 (This piece has a coda, which you can read here)
What are shutdowns?
Shutdowns can be hard for non-autistic people to understand, and weirdly even more hard to understand when they've seen one as opposed to only reading or hearing about these episodes. When an autistic person shuts down it's in response to overwhelming stress or sensory/emotional input. A problem that people around us have when trying to understand what a shutdown is, is that they can be involved in causing or not helping us avert it, but from their perspective we are being deliberately withdrawn, ignoring them, or playing some kind of difficult mind-game. This couldn't be further from the truth.
A shutdown is an involuntary reaction to stress. It is an extreme reaction to overwhelming stress that non-autistics don't experience. Our base stress levels are already at a point where most people would say they were stressed, so a shutdown can seem to come “out of nowhere” for the observer. A shutdown is a survival mechanism initiated by our brains when the levels of stress chemicals reach unmanageable heights. Shutdowns are not something we can control, although we can learn to spot the signs they are starting and take action to prevent escalation if we are able to do so (we're often not in a position to do this though). The problem with this is that we have to experience a lot of shutdowns to be able to process and identify our personal signs and triggers, and this has a negative cumulative effect on us, as we will see.
In terms of severity (by which I mean how it affects our brains, nervous systems, and the length of time it can take to recover and stabilise) a shutdown is akin to a seizure. I am not a doctor, nor have I ever had a seizure, but I've seen this comparison before, and had enough shutdowns to know how severe they are. The source can be sensory, it can be emotional, and it can be the result of too many demands being placed on the autistic person. It's also very often the culmination of a combination of these things.
What happens in a shutdown?
Our brains turn off everything that's not required for immediate survival, or that could cause us harm if not switched off (movement, for example). It's like a computer that's overwhelmed with tasks – one by one modules or programmes will stall and shut down. We can still breathe, our blood still circulates, and we can still think – but this is different for everyone and while some people can still interocept (receive hunger/thirst/sleep cues, for example), many of us can't or we experience more impairment to this sense. We're unable to do any processing, so cannot cope with sensory stimuli (except the stims and strategies we have to calm us, like weighted blankets, darkness or visuals) or questions and exposing us to this worsens and lengthens the shutdown.
My shutdowns bring on situational muteness – my verbalising module is disabled, and I am often temporarily paralysed (autistic catatonia) because my movement module is also disabled. If I am able to move, I can only take very slow, deliberate steps and have to consciously think about every single physical action. My gross and fine motor skill modules are only accessible in “safe mode”.
My longest shutdown was 5 days long, and I eventually had to medicate myself out of it with diazepam. I was unable to fulfil basic needs like eating and drinking and it was only because my partner at the time was there that I ate or drank anything. I could not wash, change clothes, or complete any task. I could not respond to questions, or be exposed to sensory stimuli outside of the “mental wallpaper” of familiar TV shows and doing online puzzles which occupy my brain in a good way.
Ingrid M. Loos Miller and Hendricus G. Loos* studied an autistic child who was experiencing shutdowns at school with an unusual presentation. The child, referred to as the SD child, would become immobile, limp, unresponsive and tired when asked to do a difficult task, and would then fall asleep for anywhere between 10 minutes and 2 hours. The shutdowns were triggered by social performance stress and did not occur in other settings. This is interesting to me, because I can experience shutdowns (with differing presentation) from a variety of environments and stimuli. What I hear from the autistic community validates both my experiences and the experiences of the SD child, so there is clearly a very individualised aspect to shutdowns in terms of cause and presentation.
What is the impact of a shutdown?
Shutdowns can escalate into meltdowns if we're not able to get away from the causes of the shutdown, and having one shutdown makes us more likely to experience further shutdowns in the succeeding days until we are able to recover. It can take days to recover from a shutdown – for me 3 to 7 days.
In the SD child study, the researchers found that experiencing shutdowns increased the child's sensitivity to further episodes. They theorised that the basolateral amygdala, when exposed to a certain stress chemical, became hyperreactive to that chemical and stayed that way for a long period of time – several weeks. This means that one shutdown increases the likelihood of another occuring within a short frame of time, and then this creates a situation where shutdowns are more likely for several weeks.
The study also showed that in periods of shutdown, the child's abilities were impaired in terms of movement, language use, cognition and emotional processing (they appeared prone to emotional disturbance and were anxious and easily upset). They were able to recover these skills when allowed the time to recover.
In adults, what I hear from the community and what I have experienced myself, is that some skills and abilities are impaired for a short period of time, and some are impaired long-term, with some skills and coping mechanisms broken for good (this is certainly the case after burnout). Interoception in particular can take a long time to restore with me, with my appetite disappearing for weeks or months at a time before I start to experience slight hunger cues. These are very subtle and hard to discern and are abnormal if they do return (I have been in a period of impaired hunger cues for around a year at this point).
How can we avoid shutdowns?
The first key to avoiding shutdowns is to identify the triggers. This could be sensory stimuli, it could be demand-based, it could be triggered by being observed (many autistic people are unable to perform if observed or are unable to perform a task to their fullest capability when under observation, even informally so). Over-exposure in terms of duration can trigger a shutdown from even a pleasant stimulus, while high expectations socially, professionally or academically can also create a shutdown situation. We are all different and will have different triggers.
It follows that the strategies we can use for avoiding shutdowns will vary a lot depending on the root cause. If expectations and observation are triggers, we need to be given space, time and autonomy to complete these tasks. In some cases praise as well as criticism can be overwhelming, so feedback needs to be given carefully (we are prone to rejection sensitivity dysphoria [RSD] which is an extreme inability to cope with any feedback, especially negative), and when there is enough processing time for us to have worked out how we feel and what we think. We should also be allowed quiet time to process feedback and given a low-arousal environment in which to do this.
If shutdowns occur from over-exposure to sensory stimuli then minimising exposure is the most gentle strategy. Some things are impractical to avoid altogether, so the use of ear defenders, sunglasses, gloves, weighted blankets or hats/hoods can help reduce the negative impact, and return some control to the autistic person.
We tend to cope best when we are allowed the autonomy to make the best choices for us, and when our caregivers support us to do this. We may need someone else to take control in the immediate event and the short term afterwards to ensure stressors are removed (or we are removed from the triggering environment) and that demands on us are managed appropriately.
Read my coda on catatonic shutdowns.