In this article I will discuss how to recognise and understand Autistic Burnout in children and adults as an Autistic person, professional, parent or carer.
I’ve struggled massively with writing this.
It’s ironic really.
It’s taken me six weeks to start writing an article about Autistic Burnout, because I’m going through Autistic Burnout…
If you saw someone going through Autistic Burnout would you be able to recognise it? Would you even know what it means? Would you know what it meant for yourself if you are an Autistic person? The sad truth is that so many Autistic people, children and adults, go through this with zero comprehension of what is happening to them and with zero support from their friends and families.
If you’re a parent reading this, I can confidently say that I bet that no Professional, from diagnosis, through any support services you’re lucky enough to have been given, will have mentioned Autistic Burnout or explained what it is. If you’re an Autistic person, nobody will have told you about it either, unless you’ve engaged with the Autistic community.
Autistic Burnout is an integral part of the life of an Autistic person that affects us pretty much from the moment we’re born to the day we die, yet nobody, apart from Autistic people really seem to know about it…
I had some parents come to see me:
It was just a chat, their little boy was struggling in school and and they were looking for some advice in how to deal with the school. Somehow we got onto talking about my experiences at school and onto my suicide attempt at fourteen, which I describe in graphic detail in How to hide your Autism and An Autistic Education. My story was horrifying enough to them I imagine, but I think what horrified them most, was what had led me to that point in the first place. They’d never heard of Autistic Burnout.
When I described to them what it was, they actually recognised a recent episode where it had occurred with their son and the more they looked back at his life, the more they started to recognise the pattern; they started to see how life for an Autistic person is really a series of peaks and troughs. They now see how frequently he has been through it and how they’ve pushed him to keep going through it, unwittingly, when he had no way of communicating what was happening to him.
So, what is Autistic Burnout?
Firstly, you may have heard of something called Autistic regression. Autistic regression, which in itself is a horrible name and a terrible descriptor, is often described around the time a child is diagnosed, or as the reason to seek diagnosis.
A parent may describe the child as losing some or all of their verbal communication ability, for any person of any age they may appear more ‘typically Autistic’. As a child, milestones they had passed – walking, toileting, verbally communicating, may revert back to a pre-milestone position. The name Autistic Regression is completely wrong though, as what it does not take into account that it can be and is often temporary, it is part of the ebb and flow of Autistic life, caused by the impact of society and the environment the person lives in, it is NOT a permanent return to a former or less developed state, as many would have you believe.
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There are, in my opinion two distinct types of Autistic Burnout that feed into each other.
The first is often termed Social Burnout. This is a frequent occurrence, where just your day, just living, talking to people, being assaulted by senses, exhausts you to the point where you can only collapse in a heap at the end of the day, or at the end of the week, depending on your constitution (remember this won’t be identical for everyone, but it certainly will be similar). This happens at any age, from a baby up until old age.
A Memory…
The bell rings for the end of the school day, the children are filing out of school, so I duck out into the woods and light a cigarette.
I need the noise muted and filtered; the wind does that, carrying the hubbub of the end of day away from me – I’m an expert at this by now, staying downwind of noise. My whole body is tired, lead boots weighing me down, my brain slowed distinctly, reactions are slack.
A day of talking and socialising – Conversations with adults and children, timetabled and spontaneous. Running the conversational scripts in my head to full capacity all day long
Surrounded by noise; screaming children in the playground, shouting children, singing children, musical instruments, banging and clashing, the general commotion of the classroom; and over the top, the dumpf – dumpf – dumpf of my heart in my ears and in my chest.
The strip lights overhead, flickering constantly in pulsing waves, each one shooting through my eyes and down through my body; I can physically feel each pulse humming and vibrating.
A vast array of colours and patterns on the brightly coloured walls, covered with brightly coloured work. The sun glaring through forty year old, grimy windows, diffracted around the room, while a billion dust particles dance captivatingly, confusing my already overwhelmed eyes.
And over the top of it?
Masking.
Suppressing my reaction to all of this, the urge to scream and scream and scream till I explode – wanting it all to go away. My face is still, good eye contact made, no matter how much it hurts, being touched constantly, leaving my skin feeling like it has been repeatedly pressed by a molten hot branding iron.
It’s not over yet though.
Three quarters of an hour of tidying and prep for the next day and it’s time to leave. I get a lift with a colleague as the buses are so infrequent, so I have to maintain conversation. My colleague is lovely though and can generally sense somehow when I can’t speak, a ten minute car journey often passes in a vaguely comfortable silence. It’s sometimes like a tiny piece of decompression time before i get home.
When I get home there’s nobody there. Sometimes turning the key in the lock is the hardest thing to do, it’s so heavy. The weight of the bag on my back pulling down. My lead boots heavier and heavier.
I get through the door and drop my bag. I crawl and stumble up the stairs and make it to the bedroom, collapsing on the bed without even the energy to remove my shoes, my eyes are heavy, exhaustion pulling my lids shut.
3 years diagnosed and I have no idea what is going on, this is my normal.
Several hours later when Michelle comes home, she finds me and wakes me, I have enough energy to make it through the evening, just. My conversation is muted though, like when someone asks a child what they did at school and they reply with “Nothing”.
I want to respond, I want to engage, but I have neither the ability or the energy.
I’m 26 and I’ve been doing this for as long as I can remember, practically every day the same.
The days when i can’t do it, when I can’t collapse in a heap, the worse it is the following day…
Can you imagine this, day in and day out – this is just everyday life and this was pre-me having children. I’ve got three children now and they are the light of my life, but how they have impacted on me having the ability to recover day after day is immense. I could no longer collapse – I didn’t have the capacity.
The responsibility of having one, then two, then three children led me to have to Mask and suppress even more, fight through and resist the extreme, overwhelming shutdown my brain and body wanted to go into.
This has become a sick joke to me. When people message me and ask me how I am, my response is:
Autistic Burnout is exactly that; The shutting down of mind and body.
If you’ve ever had a problem with a computer and it’s had to go into safe mode – that would describe what happens to the brain – it runs on limited function, not all services are available – it’s access to the Internet (my Rolodex, as I described in The inside of Autism: The world inside my head) denied and unable to connect. No little white bars to indicate how strong or weak the signal is, because it’s just not there.
Physically I often imagine it as the need for hibernation, where the body effectively stops all but the most important functions, the heart rate slowed, breathing distributed evenly and slowly, hovering on the precipice between sleep and death.
Except, through this all, you are awake and expected to function, expected to get on and live your life, so you repeatedly go back and do the same things over and over again, put yourself through the exact same scenarios that caused you to feel like this in the first place, rinse and repeat.
Another aspect of this is that Autistic people, for some reason, possibly related to Masking and wanting to fit in, are incredibly eager to please. Part of that eagerness, especially for those who don’t fully fill the Pathological Demand Avoidance profile, is often an inability to say “No” to people. So we take more and more on, we allow our plates to get fuller and fuller, our anxiety heightens, our sensory processing becomes more difficult to maintain, our Executive Functioning abilities spin out of control and again this attributes to burnout. We aren’t generally terrific at juggling plates.
Jeanette Purkis, who is an Australian Autistic, an absolutely wonderful writer and a Member of my network organisation, The Autistic Cooperative, has written an excellent piece called “‘Too Nice’: Avoiding the traps of exploitation and manipulation.”
In it Jeanette says:
“There is an actual concrete reason that we tend to be taken advantage of and it starts with the difference in communication between autistic people and neurotypical people. Autistic communication is generally on one level. We are honest, up front and do not often do things like manipulation and deceit. We generally do not lie although many autistic people are capable of lying if they feel the need but usually it doesn’t come naturally.
Neurotypical people (or ‘allistics’ if you prefer) operate differently in how they communicate. Their communication tends to happen on more than one level… It can be seen as the difference between visible light and infrared light. If you can only see visible light then it is hard to imagine what infrared looks like, even if you are aware it exists.”
These differences are not visible to an unaware or undiagnosed Autistic person, so it leads not only to the full plate, but offers up the Autistic person to all levels of potential abuse and manipulation through compliance. I could talk right now about Behavioural Therapies such as Applied Behavioural Analysis (ABA) or Positive Support (PBS) and how they take advantage of the Autistic being eager to please and open to manipulation, but I’ll save that for another day.
I mentioned in An Autistic Education, about the fallacy of parents repeatedly sending their children into school, making the same mistake over and over again, watching their child crumble before their eyes, yet unable to break the cycle even though they can see what is happening to them.
You HAVE to go to work, as much as you HAVE to go to school.
Society demands it.
Society demands compliance.
Autistic people are doing the very same thing. We repeat processes constantly which wear us down mentally and physically constantly, each day, without a break. Some undiagnosed people unwittingly develop strategies to cope with this, the Mask again, rearing it’s head, but it all catches up eventually…
And all because we’re made to think that we have to.
This is what people do…
Society demands it.
Society demands compliance.
As I mentioned earlier – burnout covers all age groups. Autistic babies suffer Social Burnout as much as children or adults. Babies who do not wish to be touched, babies who are forced into eye contact, babies who are picked up and manhandled, babies who have even less of a filter than Autistic children or adults, to block out the overwhelming sensory sensations they are put through.
So, if this is the every day normal for an Autistic person, to one degree or another, from birth to death, what happens after an extended period of doing this?
***
The second type of Autistic Burnout.
You crash and you keep crashing.
If you imagine everything that I have described above, the shutting down of mind and body, but imagine it occurring over a period of weeks, or months or even sometimes years.
This is extreme Autistic Burnout. It’s usually the result of the day to day overwhelm combined with an event or trauma, or typically the weight of life building to a point where the Autistic person has to cease to function.
When I was fourteen, my Autistic Burnout was triggered by a combination of things. I’d reached the end of my tether with school – i just couldn’t hack it any more, couldn’t hold in the pain it was causing me any more, I was in a constant state of sensory overwhelm, I was isolated, confused and didn’t know what was happening.
My Grandfather had recently died too – which was a massively life-changing event for me.
I’ve mentioned that touch burns me?
Well at that point, the only person on the planet that I knew about, that could touch me without it hurting, was him. Albert Ferguson was the kindest cuddliest man i have ever known, I remember my eldest sister (who is also Autistic) and I were forever clambering over him, rubbing his shiny bald head, breathing in the smell of his tobacco and ‘two fingers’ of single malt whiskey. I’d lay there silent in his lap for hours while he’d regale me with regimental details, battalion names and numbers from his time in Burma during World War II and days later he’d test me on them, delighted when I remembered them correctly.
When he died he left a huge gaping cavity in my heart and my mind.
One of the worst parts was that he was hospitalised for a long time before he died, months and I was not allowed to see him. I was desperately sad that he’d gone, but I also incredibly aware that now I had nobody to touch or be touched by. I resigned myself to a life of pain at that point, could not conceive that I would ever find anyone else that wouldn’t physically hurt me.
So this combination, along with the overwhelming confusion of what was ‘wrong’ with me, why I couldn’t really connect with anyone, why people singled me out or played tricks or used me, of what the hell was wrong with me and why i just kept hitting this wall over and over again, was what led me to crash and burn out – my physical body and mind started shutting down. I could feel each system in my body closing off as gravity got heavier than it had ever been. I didn’t know what to do – did not understand what was happening to me – I had no way to communicate this.
It was like a switch had gone off, my verbal ability to convey what was going on in my mind and body was gone.
I did not want to die, I’ve never wanted to die.
I needed to step out.
I needed to remove myself from the environment and take myself elsewhere; I needed to escape.
But the only way I knew how to do that was to die. So I tried.
What I was feeling though was not depression, I know that now.
Some researchers are starting to listen to Autistic people and are starting to recognise that clinically, Autistic Burnout shares a similar presentation to Depression, but is a completely separate thing. As this study shows, they are seeing how Masking, or Social Camouflaging has a distinctive lead-in to the high suicide rate and also into other mental health issues that are identified, sometimes wrongly in Autistics and, as this study shows, how a lack of Autism Acceptance plays a huge part in that too
The lack of distinction between Autistic Burnout and Depression; In fact the lack of recognition of Autistic Burnout at all, outside of the Autistic Community, has caused many problems for Autistic people. Many who have been identified as depressed have been and still are being put in psychiatric units, psychiatric care, drugged and then have developed Mental Health issues off of the back of this – when really what they needed was major sensory withdrawal/stimulation (depending on the person), acceptance, understanding and rest.
I’d been taken multiple times to the GP by my Mum and had been from the age of twelve on various types of antidepressants, which looking back, is actually quite horrific, but probably indicative of a time where so little publicly and medically was known about mental health, let alone Autism.
I cannot emphasise enough how important it is to make the distinction: that Autistic Burnout is a separate thing from Depression and how important it is, that it starts being recognised and addressed in Society.
None of this is meant to imply that an Autistic person cannot be depressed – that is not the case at all.
Along with the things that cause anybody to be depressed, prolonged burnout can definitely lead to a depressive state, as indeed can, as the study above shows, a lack of Acceptance -it is hard for that negativity to not be absorbed, especially by people who are emotional sponges and highly reflective of the emotional state of people around them.
This is also definitely not to say that a suicide attempt comes along as part of the package of Autistic Burnout, because it doesn’t always. I’ve had periods of intense burnout where i haven’t taken that measure. It is however indecently common amongst teenage Autistics diagnosed or undiagnosed; and those who are diagnosed later in life.
Recent studies show that prevalence of Suicide attempts amongst Autistic people stands at 35% of the population, with suicidal idealisation at 66%, with separate studies indicating that approximately 10% of all suicides are by Autistic people – bearing in mind we make up 1% of the population, supposedly. I would hazard that that rate is exponentially higher in reality.
I’ll talk a little more about suicidal idealisation later.
***
Extreme burnout comes fairly regularly during an Autistic’s life and there is a school of thought amongst the Autistic Community, that when Autism first becomes ‘apparent’ to parents – you know, the old “They were a perfectly normal toddler, then they had their MMR…”, between the ages of 2-5, when it becomes noticeable to most parents who don’t know what they are looking for and have zero frame of reference, that the child is undergoing Autistic Burnout – their apparent ‘Autistic Regression’ is because they have had some kind of event – starting nursery, going to school, home life changes, something sensory – it could be anything for each individual child, some major (to them) change that has overwhelmed them to the point that their Mask (which starts establishing itself very early on) has completely dropped off.
The Mask coming off is exactly what happens during the Autistic Burnout period, your Autistic traits become more obvious as your brain goes into Safe Mode. You may become more inflexible, your ability to ‘mock’ making eye contact may disappear completely, your ability to socialise may be drastically reduced or go completely, you may sleep more, want to be on your own more and bury yourself. Life just gets significantly harder and gravity, as i mentioned before, just pulls you down more and more.
A Memory…
I’ve left my job.
Well, my job has left me.
I was happy there once, for a long time. Then the rumbles of change started, people losing their jobs, major restructure.
My performance dips, i grow tardy and try to cover it up. It’s halfheartedly noticed and commented on, which just makes my anxiety worse, everyone really is too worried about their own jobs though.
I spend day after day not doing anything, other than pretending to work, because I’m not coping. My life is spiralling out of control and all I can think about is the look of horror on my Wife’s face when I tell her I’m jobless.
The lack of communication, the vague realisation that the people you work with, the people who have actually helped make life feel sort of good over the last few years are my competition now. All of a sudden it seems like everyone is Autistic, nobody makes any eye contact with each other.
My replacement, from elsewhere, sits opposite me, I’m to train him.
I’m offered my job, but a long way away. It feels like the final slap in the face. They know I’m Autistic, they know I have Meniere’s disease and can’t go that far on the bus – what’ll be a two hour journey every morning and night.
I walk out. I ride the bus home. I go to bed.
I don’t know what to do.
Then the click. The flick of the switch. I feel it deep inside me. I recognise it with abject horror, i remember the feeling. I remember the lack of self control. My mind goes into Safe Mode.
What to do? How do I explain this to Michelle. I clutch at my throat and my words are gone.
They come back a time later and I’m able to tell her.
The horror I imagined was there.
But also love, so much love in those deep brown eyes.
I was safe in them. The only eyes I’ve ever been able to look at.
Eyes i can distinguish the patterns in and lose myself in.
I clutched her tight and the Mask dropped off.
I heard it slide to the floor and crack in half.
The next few months were like wading through treacle, physically, mentally and emotionally, but equally I was wound tight as a spring. My sensory sensitivity was incredibly heightened, I couldn’t tolerate noises, smells, too fast movement, anything really.
Doing the simplest of things exhausted me and still at that point i had no real understanding of what was happening to me. I was an Autistic man on anti-depressants for the umpteenth time of my life, completely not depressed, but not knowing how else to explain it.
The truth is, I was relieved not to be at work- it gave me the opportunity to switch off which I needed desperately. Had it not happened I think I may have looked at the suicide option again, it negated the need to step out.
As it was around 9 months later I started to wake up again – my mind and body felt more alert than it had in years.
Michelle and I have talked extensively about that period and the period after and she sees the difference in me. She recognises that I Masked an awful lot with her from the moment we met, despite my attempts not to and doesn’t see it as me lying to her, she understands that I was doing what I did to survive and often unconsciously.
My period of burnout saw me unable to function really at all. I was kind of a vaguely absent father – there, but going through the motions, rather than actively engaging.
We struggled financially, I started proceedings for constructive dismissal, but was so crushed and lethargic, and the proceedings were through a Council process which was massively bent in the Council’s favour, so we gave up.
I can honestly say that those months were tortuous. We came within a hairs-breadth of losing our home. I expected Michelle to ask me to leave and wouldn’t have blamed her if i did. But somehow we came through it and I came out of it.
I came out as someone desperate to know what had happened to me. The pieces were falling into place that there must be a better way than this, there must be reasons for this.
So I turned on line and found Autistic people. I started talking and learning, realising that ideas and narratives that had been floating around in my head actually existed and names – things like Neurodiversity.
I found the Autistic community.
I stumbled into this world; metaphorically, my eyes shielded by my arm from the glare of Autistic gold shining back at me.
I’ve not looked back since.
***
I said earlier I wanted to talk more about Autism and Suicide.
Sadly the two seem to go hand in hand.
But not all suicide amongst Autistic people is directly attributal to Depression, because not all Autistic people are depressed, as I mentioned before.
Earlier I touched upon my experience at fourteen and explained how it was less an attempt to end my life and more being backed into a corner and it being the only way to get away from the situation I found myself in.
Anecdotally, I have talked to a significant number of Autistic people about this (a few hundred) and have found that their experiences matched my own – not only in the ‘why’ they had attempted suicide, but also in that, like me, they are pretty much constantly thinking about ways they can do it.
A Memory…
The noise of the traffic is too great.
The cars are screaming past, one of those motorbikes that sound like giant broken hairdryers is gunning it’s engine unnecessarily.
The sun is glaring down upon me, the warmth is nice but the light is too bright, too strong and I don’t have my sunglasses.
A throng of people are walking round, I’m like a rock in a river with the current parting round me, but I’m being buffeted and jostled, my body is burning.
Somehow I’m forced to edge of the street, right to the curb.
My head is spinning, eyes feel like they’re vibrating in my skull, my teeth hurt, everything is building and rising. I look up the road and see a bus coming, no chance of it slowing.
I step in front of it.
The world falls silent, everything slows. The bus coming towards me in slow motion, blurred with movement, feet away, inches away, the look of realisation dawning on the driver’s face as he sees me, contorting into fear and horror.
A glance back over my shoulder at the oblivious people, heads down, intent on their journey, not noticing the person about to dissolve into peaceful oblivion.
Stepping out.
I close my eyes, my arms open wide, embracing the stillness about to come, a world of soothing dark, comforting silence.
I can feel the roar of the wind, the roar of the engine comes, the world kicks into normal speed and…
I’m back on the pavement, jostled and bustled, ears assaulted with noise as the bus speeds past me.
I do this all the time and so do so many Autistic people. Stepping into traffic, jumping off of things, taking pills, all manner of things. It ebbs and flows, depending on what your are doing or where you are.
These are not intrusive thoughts, as such. It’s almost like they are deviations on a path, where in one world you make the choice to step out and in the other you don’t, but you bear witness to both those paths at once, for just a few moments – the intensity of the situation allowing you to witness a shearing of worlds, of universes, where in one you die and in the other you carry on.
We generally don’t want to die.
We want to escape.
We want to step out.
The world is an overwhelming place for us – it doesn’t have to be, but the way it’s set up with colours, noise and lights and people and expectations makes it so.
We lose ourselves in repetitive behaviour, we Hyperfocus, we Stim, we become different characters or act as animals, we script conversations, we withdraw, we hide in worlds inside our heads, we close ourselves off, or equally sometimes explode outwards, we Mask – all in an effort to endure this world we live in, to survive, to find balance with ourselves internally and externally and also, to hide who we we are – to make Non-Autistic people accept us, because we don’t find acceptance as ourselves.
This is why we burn out.
***
Signs and Symptoms of Autistic Burnout
The warning signs of Autistic Burnout are actually quite easy to spot if you know what to look for, either from an external point of view, as an observer, or loved one or internally, from an Autistic self’s point of view:
- A growing lethargy
- An increase in irritability
- An increase in anxiety
- An increase in over-sensitivity to sensory information
- A dramatic decrease in sensitivity to sensory information
- Heightened Auditory processing disorder
- A decrease in verbal language
- A decrease in text language
- An increase in Shutdowns and heightened withdrawn state
- An increase in the frequency and severity of Meltdowns
- A diminished ability for the person to self-regulate their emotional state
- The slowing down of the thought processes
- Brain fog
- Memory loss
- A decrease in your ability to effectively communicate what you want
- A decrease in motivation
- An inability to generate momentum of body and of action
- An increase of rigidity, narrowing of thinking
- A feeling like your vision is tighter or narrower
- Extreme forgetfulness
- Extreme overwhelm
- A massive increase in guilt
- An increase in Executive Dysfunction
- An increase in Demand Avoidance
Can you see why it’s often mistaken for Depression?
Run through that list again and apply each of those thing to, firstly, a child.
Say one in the region of 0-10 years.
How would all of those symptoms present? You got it in one: Bad behaviour, defiance, lack of compliance, willful disobedience, withdrawal, self-harm, depression. Especially, if you consider that any child, across what is a huge age range, is likely unable to be able to express or communicate effectively, if at all, any of those things, or why they feel the way they do, or even how they feel the way they do, especially if they are Autistic.
If you apply it to a teenager, who has a mess of hormones running through them, who is acutely aware of how much they stick out like a sore thumb, whose growing self-awareness, their very sense of self, is being fractured by a combination of everything they are going through in day to day life AND everything on that list; how does it present? Bad behaviour, defiance, lack of compliance, willful disobedience? Or the other way, they withdraw completely, they’re described as Moody, as an extreme Teen, they lock themselves away and become more withdrawn, less social, less able to function. Through all that they are likely still able to communicate any of this.
Now apply both those scenarios to someone who is undiagnosed. From the outside looking in, they are behaving ‘badly’, ‘acting out’, or they are depressive, or ANGRY, so they are drugged and Therapised, or treated to such delights as PBS or ABA to ‘improve’ their behaviour’, or they’re just left to get on with it and kill themselves, or get caught in a cycle of self harm, or get wrapped up in short bursts of highs to make them feel better, as in drugs or criminal behaviour, as they fight against themselves and how they are feeling, or all of those things.
It sounds drastic doesn’t it?
Yet it’s happening every day.
Mostly because people do not know or understand ‘why’. There are a myriad of reasons so many Autistic kids (diagnosed and undiagnosed) are in the young offenders system and then further on, Autistic adults in the Prison system.
***
So what can we do to to ward off Autistic Burnout and what can we do to mitigate it once we’re in it?
Firstly acknowledging and accepting that it is a thing and you or your child will go through it – Social Burnout pretty frequently and Extreme Burnout at least a few times in you or their lives.
On a basic level, allowing periods of withdrawal, or decompression time at the end of the day, or even throughout the day can make a big difference. Time where the child can effectively take time to process what has happened throughout the day, shut off external sensory stimulation and basically be inside their own head for a period of time. You may also find that this helps with the level of and freqency of Meltdowns that occur. Especially if you or your child Mask and do the coke bottle thing of bottling up everything all day and exploding at home.
Adult or child you need to proper time to withdraw. So even at Social events or Social Situations having an escape plan ready is vitally important. A reason to leave either completely or temporarily, a quiet space or bolt-hole to enable whoever it is to just have some time away from people.
It’s really important to recognise also, that after significantly stimulating or potentially overwhelming events or periods, that the person may need a day or two off of work or school. This may not be realistic, but it is effective. Allowing this decompression time is incredibly important. It allows the Autistic brain and equally the senses, an adjustment period to reestablish whatever the person’s brain or body considers normal parameters.
If the person is of school age, then it will definitely depend on your relationship with the school and how frequently they need decompression days, but my philosophy is generally that my child’s mental and physical health is more important than a day at school – if they need a decompression day, they take it.
If I need to be fined, then so be it, but I’d love to see someone try.
Work may be a little more difficult but, again, it depends on how good a relationship you have with them. If for some reason you can’t take a day, then taking as much free time to yourself as you can, with as minimal mental and sensory stimulation as possible is the best you can do. It won’t be enough forever though.
Once you’re in burnout, you need to learn to recognise and accept that you are.
There isn’t a huge amount you can do beyond throwing away that Mask as soon as possible and taking as much space as you can get with as minimal sensory input as possible. Some people find that doing hands on tasks helps them, others go for long walks, or immerse themselves in books and films.
Sometimes it drags on and on, sometimes you can see it coming and not be able to stop it.
The period I’m in now was triggered by me, if I’m totally honest.
Autism Awareness week in the UK was, this year (2018), incredibly busy for me and so was the week preceding it.
I established a working relationship with the North East Autism Society earlier in the year and they asked if my family could be their campaign – so hours of filming, I blogged everyday, I made videos for the first time, spoke on various radio stations, we featured across several newspapers five or six times over the course of the week, plus I also had a trip down to London for the launch of the Westminster Autism Commission report on harmful interventions, plus had to respond to the hundreds of Tweets, Facebook Comments, messages and emails that were thrown at me.
All in all I threw myself into the whole week.
If you’ve gotten this far down this article, you can probably imagine by now what I felt like after all that. I have written the majority of this article in one day, for the last six weeks since Autism Awareness Week, I’ve written nothing, not a word.
As I said at the beginning, the irony being that I wanted this to be about burnout, yet didn’t have the strength to write a thing.
***
The biggest thing of all you can do to prevent, or at least mitigate burnout, is to start identifying what you do when you Mask and stop.
Even just little things like eye contact, which so many of us do, or at least pretend to do.
Allow yourself not to be sociable if you don’t want to be.
Give yourself permission to duck out of situations you can’t cope with instead of pretending you can.
Got something important to do?
Cut out as much of the other crap as possible – give yourself a break, go hole up in a cupboard under a blanket for a few hours, or alternatively, if you are able, go and run or cycle really, really fast (sometimes the wind rush can literally help clear away the cobwebs because so much sensory information is cut out).
A big sensory break every few days, or weeks, coupled with smaller sensory breaks throughout the day could make the world of difference to your life, or the life of your loved one.
The biggest thing of all you can give yourself, or your loved one, is time.
I’ve experienced Extreme Burnout probably 4 or 5 times in my life. Lesser ones a significant number more and social burnout pretty much daily. The biggest thing that has helped me avoid and mitigate it, is learning about myself and the way I have done that, is by connecting with the Autistic Community.
I have learnt to understand the ‘why’ of why I react to certain things in certain ways, I’ve learnt to understand ‘how’ to best avoid certain situations or to shield myself from them with Masking. I’ve been supported into learning how to Accept myself and shuck off, to a certain extent what has been thrown at me
Autistic people have the tendency to want to pull people together because of their similarities, not push them apart because of their differences – We are accused of wanting to be solitary, of not wanting to be around people, when we have one of the strongest Communities I have ever witnessed.
The Autistic community is there waiting to be used by Autistic people and their families alike; a font of deep knowledge, a library of cross-referenced and correlated information about Autism, that you will not find coming from an Autism ‘Expert’ or ‘Professional’ and you will certainly not find in the DSM 5 or ICD 10/11.
Autistic Burnout is one of those things you will not learn about from Professionals, yet Autistic Burnout leads to death. How horrifying is that?
So please, play your part today and help yourself, or your Autistic loved one to recognise it and take appropriate steps to stop it.
Help save a life.
I’m coming out of my burnout period. I feel like mentally and physically the fog is lifting – I’m starting feel like gravity is slightly less effective as it has been, I’m still exhausted and have been sleeping sometimes 14 hours a night – which is bizarre for the person who has spent his whole life averaging 4-5 hours a night and actually has made me more tired than refreshed I think!
I know it’s coming to an end because I’m writing again. It’s taken me six weeks of staring at a computer screen and writing nothing. Yesterday I wrote most of this in about three hours. I’m on an upward trajectory again and it feels good. Still not quite there though, my Executive dysfunction is still playing merry hell – I’ve been tinkering with this now for five days!
Sometimes knowing what you are experiencing makes the experience less frightening and easier to manage, it offers you a level of control over the situation and expecting it will happen does too.
If society changed to accommodate us our lives would be a lot easier, instead though, for the most part we are still expected to change ourselves completely or play catch up – so if there are ways where you can make your life easier – and not damage yourself in the process as with Masking, then i recommend you do them – there is no support for this, except from Autistic people, and if you’re lucky enough to have understanding family – so self-care is your priority.
A key thing to remember here, because there are, I know, proponents of a theory that much of what is identified as Autism is actually the descriptor to a response to lifelong trauma and I know that much of what I write here could be seen to be backing up that theory.
As a disclaimer. It could not be further from the truth. Trauma plays a huge part in the the Autistic upbringing and life, but that feeds into Anxiety. Autism is described by Neurology. Our Neurological functions are different from birth, our brains work differently. Trauma does not play a part in shaping our Neurology. Trauma plays a part in shaping our personalities. Autism is Autism.
Autistic Burnout is real. It exists. And it plays a huge part in taking our lives.
Repeated short term burnout is completely unsustainable and has huge long-term implications.
So please, whatever you do, take care of yourself.
Kieran.
***
Some other links about Autistic Burnout:
The wonderful Amythest Schaber:
Keep in touch with Kieran Rose, The Autistic Advocate
If you’ve found this article useful you can support my work by donating any amount from $3 (about the same as a coffee – mine’s a caramel latter please!).
The Autistic Burnout blog is now available as an ebook
The internet is great for reading blogs, but sometimes you just want something you can read on paper!
You can now choose to buy An Autistic Burnout as an ebook; you’ll be able to download it to any of your devices and also print it out (so you can make notes and also share it with a friend, teacher, parent etc).
Buy An Autistic Burnout an as ebook here
Read more about Autistic Burnout
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Covid, 2020 and Autism: Where is my mind?
Where is my mind…? I’ve been repeatedly playing the song by this name by The Pixies, just as a reminder to ask it the question of myself. This year my Autistic brain has found itself circling losing itself over and over; and it’s been little to do with Covid-19. I usually hate falling into clichés…
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We are not OK
“Society beats into me how I should be raising my son, but I don’t think my way is wrong just because it’s different. Still that pressure to seem normal is overwhelming. I’m constantly fighting the urge to Stim or rock or shutdown in public.” – Jessica Trigger warning for suicide, self harm, suicidal idealisation, depression…
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An Autistic Burnout
In this article I will discuss how to recognise and understand Autistic Burnout in children and adults as an Autistic person, professional, parent or carer. I’ve struggled massively with writing this. It’s ironic really. It’s taken me six weeks to start writing an article about Autistic Burnout, because I’m going through Autistic Burnout… If you…
89 replies to "An Autistic Burnout"
I recognise so much of my and my daughters’ undiagnosed life experience in this article. My daughter is currently in extreme burnout and I am trying to differentiate between that and potential depression, so that we can find her the right support. This has really helped – Thank you.
Thank you for the effort it took to write this. It resonates with and helps explain many of my life experiences much moreso than depressive disorder.
My daughter is 14 and was diagnosed ASC last June. She presented with anxiety and depression and due to the lack of help and support we did end up letting the Drs prescribe Prozac as her meltdowns and aggression/violence were causing my mental health to worsen.
She is now calmer and doesn’t meltdown so much since but what Drs day is depression hasn’t changed. There’s no point talking to them about burnout as they won’t agree. She is virtually mute since last summer, and has what Drs said was an eating disorder but I have always said it wasn’t but was to do with her autism and need for control of something in her life. She herself thinks it’s depression but since reading more about autistic burnout
I’m thinking it’s possibly this that’s happening.
My son was diagnosed being anorexic when he was 12, but I knew it came from somewhere else. Soon after he was diagnosed with being autistic and we got help for that part. That also ended his eating disorder. You are right, it is a control-thing. And it is so hard when no drs take you seriously… but most of the time the parents gut feeling is right. I wish you all the best! (I’m Dutch, so I hope you can understand my English)
Your English is perfect and yes, its often control.
(Sometimes well meaning people are too quick to go down the route of thinking its sensory too)
Too often its someone who is traumatised and grasping for control over one of the few things they can control.
Hi, I know this is an old post, but it feels completely relevant to me today. I have been the on-call parent for the whole of the pandemic for our three children, two of whom are also autistic. I also have ADHD, which adds to the strain as running a household stresses all my weak points.
It’s been tough, but in the past month it’s got to the point where I’m really not coping. I can’t spend more than 20 minutes with my beloved children without having to escape. And that’s a good day.
The only positive of the pandemic is that I finally have an alternative to suicidal ideation – I can now fantasise about having to spend two weeks in isolation in a hotel room.
I am desperately praying things will improve once schools reopen and I get some solitude.
Do you have any strategies for surviving while continuing to keep my children alive and the house habitable?
I have been seriously depressed before, and this
Hi Sophie, I hope you have been able to have a bit of relief since your children went back to school and that re-entry hasn’t been too tough for them or you. Well done for keeping going and recognising your limits.. it’s so hard with opportunities to take a break these days.. I’m in a similar position and hoped things would get better but after 2weeks I recognise that I am overwhelmed and my concentration is shot.. i’m going to take some time off work as it’ll only get worse if I don’t (& it’s only 1 week till the Easter holiday). Did you find any strategies for getting through? I think it’s in the small things, and short breaks.. creating little rituals of time to yourself, walks, baths, yoga.. I read too late and don’t get enough sleep and sometimes don’t have the energy for the small things.. I guess it’s sometimes reframing- so maybe housework could be grounding self-care to improve our wellbeing rather than a chore? I’m just thinking out loud here.. my house is a tip and I don’t know where to start to improve it… I hope you’re doing ok..
Hi Sophia, and also Clare who responded to you. I’ve only just found this website and feel like I was guided to this article because it is relevant to me and my 15 year old daughter. I share Clare’s thoughts about reframing tasks & necessities – it works. I listen to podcasts as I’m cleaning as that helps me think I’m making the most of my time – I hope to drop that at some point because I recognise it as potentially overloading. and a bit frantic. Generally what has made the biggest difference to my managing life or not is that I accept wherever I’m at now and have been helped to do that by a few bouts of counselling. When I accept I can then make any positive changes from a position of strength and choice. Best wishes to both of you.
Huge thanks Kieran for writing this. I now understand I’ve been in extreme burnout for YEARS. That horrible work situation Kieran was in? I’ve had that maybe 6 times, burned out badly – but had to keep working and earning, no significant recovery time. The results are not pretty.
I’ve always been hyper-verbal – but speaking (and less so, writing) are tiring and disregulating – always. Ironic, huh? I am also feeling the need to be virtually mute. Maybe it’s necessary – for me, and for your daughter.
Hi Viv, my son also 14 is going through extreme burnout. He is high functioning ASD but had a great deal of stress as he transitioned into high school and the stress of remote teaching and this pandemic. We saw it coming on slowly. His marked slow down, lack of motivation, and so bad that it progressed to a muted state. He will only talk to outside people like his teachers or the doctors but even in doing that takes a great deal of effort. Doctors told us it was anxiety prescribed meds but I know it is burnout. It is hard as a parent to watch this too and I hurt trying to help him.
ARFID is common with autism, and texture/taste sensitivity increases with stress/burnout.
Never heard of Autisticburn out found it interesting how it was explained
My son has experienced lots of these while we were waiting for his diagnosis (asd asbergers) I found this article so interesting 2 read as some thing happened along these lines last yr wiv my husband he’s undiagnosed but he now says his self that he thinks he has a lot of the traits and things since we ve been goin through the diagnosis process wiv my son thank u for sharing
This article really made the situation I know my daughter is often in crystal clear (at at least, clearer). her primary diagnosis is “severe anxiety” but we have all known that its PDA autism all the way. (well, since we heard of PDA). I just hope that she can build a life which allows for this. She has so much to offer if only she can.
I enjoyed your article on autistic burnout I too like many others here had not heard of this before. Thank you for sharing your experience, these insights are very helpful.
i was very informative , well write and easy to read
thanks
it was very informative , well write and easy to read
thanks
Thank you for taking the one and energy to share this. I feel more able to understand my sons needs – that is such a precious gift you have given me. Thank you
Thank you for taking the time and energy to share this. I feel more able to understand my sons needs – that is such a precious gift you have given me. Thank you
Very insightful, thank you and I’m so pleased I came across this. I’ve been struggling through the above explained Autism Burnout for over 2 decades, after a traumatic experience literally shut down both my brain & body at age 36, I’m now 60. Basically rendering me non verbal for the first decade & yet through that time & up to this point I’ve pushed & kept pushing to find answers as to what was happening or had happened to my logical mind, awareness’s, skills, senses & abilities that I once possessed. Which was literally a sudden loss/feeling or draining experience of chemicals out of my body in slow motion, but in an instant. Only recently was I diagnosed Asperger/Autism in late 2018, which offered an insight to things I had been explaining to other Specialist for the 2 decades without anything concrete as a possibility or even solution. All medicines offered agitated me more than I already was, so were promptly stopped. I feel the warning signs as mentioned above since diagnosis & sometimes I can see the signs, but now with this solid knowledge I may be able to reduce the risks of full relapses, as I’ve experienced for what seems a lifetime now. Diagnosis of Autism has changed my life, I am elated to be honest, as it explained a whole life time of history to me & now this ads to knowledge gained. Great to the point explanations, thanks again for the time and effort. Cheers
Very insightful, thank you and I’m so pleased I came across this. I’ve been struggling through the above explained Autism Burnout for over 2 decades, after a traumatic experience literally shut down both my brain & body at age 36, I’m now 60. Basically rendering me non verbal for the first decade & yet through that time & up to this point I’ve pushed & kept pushing to find answers as to what was happening or had happened to my logical mind, awareness’s, skills, senses & abilities that I once possessed. Which was literally a sudden loss/feeling or draining experience of chemicals out of my body in slow motion, but in an instant. Only recently was I diagnosed Asperger/Autism in late 2018, which offered an insight to things I had been explaining to other Specialist for the 2 decades without anything concrete as a possibility or even solution. All medicines offered agitated me more than I already was, so were promptly stopped. I feel the warning signs as mentioned above since diagnosis & sometimes I can see the signs, but now with this solid knowledge I may be able to reduce the risks of full relapses, as I’ve experienced for what seems a lifetime now. Diagnosis of Autism has changed my life, I am elated to be honest, as it explained a whole life time of history to me & now this ads to knowledge gained. Great to the point explanations, thanks again for the time and effort. Cheers
Thank you for such an amazing, clear explanation
My husband has had several burn outs in his life. They were marked by stimming,and pathalogical demand symptons. These episodes were in response to extremely stressful life situations, I had no idea what was going on at the time & tried to stop his stimming. How wrong ,how wrong was that… we didn’t even have an autistic diagnosis at that time.
Thank you for this infomative video which helps explain the what, why, and how to work with someone’s burn-out.
The toll on our marriage through lack of information has been emotionally devastating, but we are still in a meaning ful relationship 50yrs on.
Your explanation of your feelings and the amount of overload you had to deal with astounds me. I never knew it could be this difficult. thank you
Hi
Schools need to read this and understand it. I have let my son have days off because I recognised he needed a break, not because he was physically poorly but because his brain needed a break.
After reading this I now see he must be going through burnout. I have at times felt guilty that I am allowing him to miss a day or 2 of education which is reinforced by letters and calls from school about attendance.
This has been really helpful and well written and I will be talking to the school about this.
Thankyou.
Don’t ever, ever feel guilty about decompression time.
I used to fantasise about going to prison rather than suicide. I know, realistically, that it wouldn’t really be like this. But I just longed for the space to escape, to recharge. In prison, they feed you three meals a day and you always have some place to live. But you’re not expected to ‘network’ or ‘climb the career ladder’ or ‘be professional’. The lack of those expectations would be such a relief.
I’ve also had that feeling of ‘what if I just jumped off this bridge?’ or ‘what if I just stepped out into this traffic?’ so many times.
My burnout has lasted years and it’s led to my losing so many memories – almost like my mind just couldn’t cope for so long that it started just shedding long-term storage to free up space. This is the part that hurts the most. My memories were precious to me and being inside them brought me a level of escape. My burnout got so bad that I lost all the skills and coping mechanisms I had – creativity and memory and my rich inner world that I’d retreat to when things got difficult.
Sometimes I think it would have been better if I’d ended up a non-verbal autistic person. It’s my very visible ability to cope that has caused all of this burnout. I look so competent, apparently. Inside, everything is a struggle in ways I can’t even quite articulate.
My most enduring non-burnout fantasy is to be able to retreat to a vast forest and have a little cabin hidden amidst the trees. I want to live there. I’m sick of this world and its expectations and I long for forests and dappled shade with a constant ache that’s like pain or nausea.
Thank you so much for writing this. This helps me so incredibly much to understand my 14 year old son. I always felt in my gut that there was “something else” that was going on at certain times with him, something more complicated that I didn’t completely understand. Your descriptions were spot on and I will be forever grateful to you. Thank you so much.
I’m so glad that i could help, Mish
Thank you I now understand what one of the children I have been working with this past 2 years. He has come a long way from not communicating very well to going on a bus for the first time asking for his ticket going into town to the shops which was a huge step for him. We were also able to get him a little job working in a cafe in the kitchen as he loves cooking. But then came the introduction to collage for next year This is where I now believe he had his Autistic burnout. The new crowded environment, new teachers a hole new way of doing his day from having done things different for the last 5 years in school was just to much for him. I did see the change in him the regression back to not communicating what he was really feeling with head and eyes down not looking at you when spoken to. It all came to a head one day at collage he stormed off kicking the walls and doors which he had stopped doing. This is now what I believe him having an Autistic burnout. Thankfully all tuned out OK he managed in the end to tell me he did not want and was not ready for this big move right now.
Thank you for sharing
Thank you Kieran for writing this, I work in a school and this shows me how difficult it is for our students who have autism, especially the sensory overload in a normal day within a school!
I now know what to look out for and how better to deal with it to help them hopefully before they have ‘burnout.’ A place away from noise, a place to chill quietly and try and relax.
I hope that through reading your article, that I am able to help our students better.
Thank you again!
I’m glad that it helped, Jane.
The symptoms of Extreme burnout are frighteningly similar to severe anxiety..
Or to flip it round possibly severe anxiety mostly manifests in Autistic people in extreme Burnout. Being an undiagnosed Autistic is much more common than you’d think.
But to your point yes, consistent severe anxiety often manifests in a type of burnout – what makes Autistic Burnout specific to Autistic people are the effects of Masking.
Hello,
This very detailed account is something that genuinely resonates with me. We all live our own lives and have individual experiences, but in the end, there are many areas of overlap, that makes it more bearable to understand myself when I can see my own experiences through the lens of another.
Thank you
Thank you for your comment
Amazing article, thank you for writing. I nearly lost my 16 yr old daughter earlier this year, shortly after her diagnosis with autism. She had many times, since 13 really, talked about urges to throw herself in front of cars, this time she overdosed. Thank God she was unsuccessful. I recognise extreme burnout, and more regular previous burnout’s too. She is still recovering, thanks to COVID 19 she has space away from school and life to do so, although the rest of the family all struggle in different ways with her other behaviours… its hard. She has set up her own YouTube channel to help others, its amazing and every video teaches me something new about my daughter and about autism (Tess Ward if you want to look). She isn’t connected to the autistic community as you put it, she has struggled to related to autism as she saw it, hence the youtube channel. Where is the best place for her to look for support, for people she can relate to? Thanks again for writing.
Tracie, if you look through my other articles there is one about positive groups and pages on Facebook
The twitter hashtag #ActuallyAutistic is also a good place to start.
I’d suggest she lurk for a while before connecting with people, just to see who she likes.
She’s always welcome to come say hello to me on Facebook or Twitter.
I now get that the last two years I’ve experienced Extreme Burnout , following on from being diagnosed autistic. It wasn’t because of the diagnosis, that was just confirmation of who I was. The burnout was the realisation that I couldn’t live my life as they currently stood 2 years ago. I realised to survive I needed to make drastic changes to how I lived my life. It was the sheer overwhelm of the magnitude of that transformation and the energy I would need to summon when I was already burnt out.
I managed, sold my house, moved over 250 miles away back to the North East and have spent 2 years rebuilding my life, with repeated burnout episodes.
I also now recognise episodes of burnout in my daughter which culminated in extreme burnout in January. She’s been out of school since then. She didn’t leave the house for 4 months, even into the garden. She retreated into Roblox, Animal Crossing.
She repeatedly kept saying that she wanted to learn, she wanted someone to understand and help her, she just couldn’t concentrate in class and felt panicky. I stopped the battle to get her to attend, I wish I’d listened to her sooner and NOT the ‘professionals’. She will never return to a mainstream school or any place she is not comfortable with.
Gradually she’s re-emerging, she’s thriving with 1-1 specialist tuition, she’s participating in local art zoom sessions.
It’s small steps for both of us – forwards and backward ones.
Acceptance is key.
This was so interesting , thank u for sharing , my sons 23 & autistic , so a lot of what you said. makes so much sense , thank you.
Very insightful. Thanks for the moment I came across this topic.
I read this article and was in tears as it pinpoints a situation I was in almost two years ago. Working for a large corporate company, I’d been involved in a high profile project with an internationally transitory workforce and very unclear guidelines, coupled with a sudden loss of my father and a child who was seemingly really struggling in education when I eventually just burnt out.
I have to add here that I saw a corporate company Occupational Health Therapist who wrote me off and a couple of HR managers who frankly implicated the situation and compacted the issue massively rather than offering any help – I believe having read this article and since working as a support worker to individuals with autism as well as watching my son facing challenges with learning all I needed was a break from all the noise corporates cast on their employees.
Fortunately I have a fantastic partner and family who fought to get me through that period of my life but I still feel that I was cast aside from an opportunity that I loved and given just a little support would have bounced back from with greater vigour.
I have the strength now to say that I am worth ten times the individuals who all allowed me to collapse and frankly revelled in my demise. All of whom are supposed to be highly trained professional leaders in their fields – and should have done their research.
It probably will happen again to me in future but I am more equipped to deal with it and fortunately am a little more secure in my own skin.
Thank you so much for this!
This overwhelming realization of finally finding the answer is uncomfortably foreign to me. I’m checking my mental storage facility scanning for memorized responses to this unknown event but come up empty. My mind is salivating while reading about myself as best it can between shutdowns. However, behind my iron clad mask, I suddenly feel as though my entire existence has been eagerly scrawled upon a grime infested, dimly lit back alley billboard by a filth covered adult bookstore owner and his sticky, fumbling sausage fingers. Plastered there for all to see now. I don’t have the energy to care though. The elation is seductive. I’m mustering up a smile as a sweet grass scented wooded pathway is appearing before me. An endless path with colors of hope and the taste of a more meaningful existence. Thank you for that experience. Words just can’t describe my gratitude.
I actually have no words for this beautiful and eloquent response, Melody. All i can say is thank you in return and offer my graciousness that you’ve validated me as much as I hope (and it appears that i’ve validated you.)
Its real. 52 previously undiagnosed until this week. Mom died, wife of 12 years divorced, two more supports died, lost my profession of 26 years when productivity standards raised…then my psychiatrist who saw me through all of that died at the start of Covid…
Since I graduated 26 years ago, there were times when I would take “off days” and seclude alone. I managed to always bounce back…sort of…until all of the above happened over a 4 year span.
My neuro psychologist said “its autism” The loss in my cognitive skills, short term memory, higher executive function, lack of motivation, stimming I refused to hide anymore and anxiety off the charts…it has all come out in full bloom to play. “What is this?” I wondered? No one here in the United States could tell me? I have an outstanding track record of being licensed for 26 years, and published under NIH.gov
All I want to do is sit and stare as I prepare to become homeless when funds run out. I live in the United States…I spent a LOT of money to get my diagnosis b/c insurance and doctors here said there was no such thing as an undiagnosed adult after I lost my profession. Doctors wanted to put me into a psyche ward when I asked for an ASD referral.. They were wrong about me being crazy…finally a neuro psychologist who was current in her practice act gave me the diagnosis… I remain in full blown burnout. My memory is still lousy…no drive, little driving, no nothing except massive anxiety…I just sit and stare or screen watch or read. They say our average lifespan is 54. Life just does not have value for undiagnosed adult autistics in the United States maybe? I can’t understand why the Federal Government here banned the sale of He and N tanks driving us to more violent means? In burnout, I don’t really care. I am just a statistic. I understand the body is shutting down to die. I can’t remember to eat, change clothes and rarely even bathe. In nature when a prey animal behaves like this, it can’t live. It is a kindness mother nature puts in us because other human beings can’t just let us be or provide the support we require when it occurs. Not saying they should. Weeding us out through genetics might be necessary as our numbers are on the rise… Don’t know its possible to have an entire world who doesn’t work and most of us don’t. I did for 33 years total, 26 in healthcare, but I am living off savings now. That is how the real world operates. On a schedule with greed as its motivator. We are resented as being lazy. MAYBE I can snap out of this? MAYBE things will improve after 14 months of searching for a diagnosis and being treated like I am the one crazy. That took a toll too… 12 experts or health care professionals said undiagnosed adult autism just was not possible in 2020.
I had records before 18, but I wasn’t quite handicapped enough to even qualify for screening anywhere or under insurance…traits were there, so was support, but I wasn’t drooling or paralyzed enough before 18. No juvenile psychiatric or crime records dating back 35 years ago One of my failed employment attempts was life insurance. At 52 as an autistic, I am now known as a bad risk in the world of life insurance. I have another neurological problem and a learning disorder… I am not sure any life insurance company would take me on now…good thing I got a divorce and never had kids. I Always knew I was different…I don’t owe anyone anything… family is old and across the country… Its just me. Moved out here with my wife…she moved on to greener and faster pastures. She didn’t sign up for “autism”. I feel for my autistic brothers and sisters. This article was me exactly to a T…getting older and wondering, will today be the day? I am not suicidal right now…I just don’t care. I live alone and keep it quiet…trying to heal…getting some supports in place now might help? What I do have are friends who do care…they have been “hoping” medical professionals would help me b/c my friends know while I am different, I am honest, authentic and genuine. Maybe the neuro psychologist’s report might help? I am still in doubt it will be written because so many medical people have said it was impossible… I can’t believe, yeah…all you guys were wrong…it was…and here I AM now trying to cope with autistic burnout myself on my own. Got a good PhD to talk with a few weeks ago. Again, I pay cash for that, but an hour a week as all the support I get won’t lead to me drink or eat, go buy groceries. She is kind and charges me a sliding scale b/c I am in a tight spot financially, but insurance just won’t cover this sort of thing…adult autism. All the best to ALL of my autistic brothers and sisters, gender variants out there. I get it. I really do. Just know they don’t.
We must ALL hang together or most assuredly we will all hang separately.
You made me cry .Newly diagnosed at 60 and feeling burned out myself i had to pay for my diagnosis also and i live in New Zealand (health care here sucks) but no community covid here so way less stress than you. They say we have no empathy but we really have to much and it can overwhelm. My heart bleeds for you and human kinds future if we can not except diversity and just be kind .
Ah Kieran, you constantly keep me sane.
Ridiculous that only this time (I’ve read this article before!) do I reads this and take a deep sigh.
So many times I’ve tried to fight through this, berating and bullying myself for not ‘coping’.
Never ended well.
This time, thanks to re-reading this article through a different lens, I know that what’s happening to me is ‘normal’ for my Neurodivergent arse. And this time, I’m not going to feel shitty or guilty for doing what I need to do to recover. This one isn’t going to snowball into another breakdown.
Thank you.
Your site is very helpful. Thank you for putting yourself out there.
I have, only since being diagnosed this year at 60 come to realize that my life is a lie. I had built a mask to be what i thought the world wanted me to be but it didn’t protect me. What it did was make people not believe me about anything because my words did not fit with the way i behaved . As I peel off the mask it lets me out but it also lets out the anger and pain. And that combination is volatile. I don’t want to hurt people I just want them to stop hurting me.
I just reread my post. It sounds like I’m being violent. It’s very hard to anticipate how words will be taken. I felt the need to say which sex i am then realized that would be sexist. I doubt i could hurt anyone physically but my tongue can be mean.
Your post didn’t come across violent at all, it really resonated with me.
My mask has caused me to act a in way that lead to me being disrespected, and I didn’t really understand why. But now I’ve spent some time peeling off that mask and I’m in the same position that you’re in. I’m really empathetic, so I don’t want to hurt anybody….but at the same time, I have so much anger and resent toward the way I’ve been treated. It’s a tough situation to be in.
I realized I was autistic in my mid 30s. It’s a catch 22 whether it was a good thing that I realized so late. If I was diagnosed autistic when I was young, then I might have gotten proper support and learned coping skills. But on the other hand, I fear that I might’ve used the label as an excuse not to try so hard. I consider myself a strong person today because I persevered despite all the hardship and challenges. And I’ve been a very spiritual person with a strong meditation and mindfulness practice. I’m more at peace and content now than most neurotypical people I know (despite still struggling with anger and resentment). I never would’ve earned that peace without trying to overcome diagnosed autism.
Great article. It happened to me , big time. I was extremely active, businessman, medical doctor and national level athlete until a financial disaster, with $500,000 loss through incorrect tax advice. I went to pieces, couldn’t manage work, had to retire, stopped athletic training, had serious cycle accidents, felt I’d failed my family, so was suicidal, no benefit from standard medical approaches , so got involved with artificial intelligence research for suicide prevention using computers ( I am also a computer nerd). Police arrested me for my computer use – I was trying Dr James Pennebaker’s idea of throwing away thoughts – on my computer, but police made out it was seriously malicious.
I was convicted for trying to speak to the man who had messed up my finances – just spoke politely for 5 seconds asking for help, but police made out it was malicious communication. Now trying to appeal the charge, but it has been rejected even though this is the basic philosophy of Samaritans ( who suggested it)
[…] Sourced from The Autistic Advocate on 17.12.2020. Read the full artivle here: https://theautisticadvocate.com/2018/05/an-autistic-burnout/ […]
Oh, well done! Very well done!
Sometimes I can see into myself — but not so we all as you’ve done in opening a window.
Once in a while, when I can see into myself I tend to write in verse.
On Delphiforums (copywrite etc. )
Pride Killed
It
Is one
Thing piled on
Top of another until
I can’t tell death from daylight
And the fact that a broken leg keeps
Me from running to the door is seen as a sign
Of intolerable indifference to a need
Not less than my own
it all comes down in a great pile of unordered rubble bricks
crumbled tumbled bruises ruses wounds
and where to put the bandage if
I had one but she cannot see
And of course I don’t say that.
They think there’s someone behind the calm
Who can actually get something done.
Maybe I should just say… help?
Or have them see too late
the sunken wreck that was a life
Pride killed.
(Original work, copyrighted)
Amazing! I’m in burnout number 7 (in adulthood). I was diagnosed in April 2020 as Autistic plus ADHD just to make life as interesting as possible. I am 54 years old. Without any information I have managed all burnouts instinctively by leaving my job and going bush. Not having to pay rent meant I could live on my savings for a while and the surroundings calmed me. The up-side is I have survived, the down-side is many breaks in my so-called “career” so never really made a solid go at it. This most recent and perhaps most prolonged / severe burnout (yes, it gets worse with age and menopause) sees me surrendering. I give up. I acknowledge I no longer have the capacity or desire to function in the NT world. It’s a relief. Thank-you for your article.
Wow. You are me.
I was lucky enough to “make it out alive.” 30 years of intensity with “escapes” of added intensity lead to a massive, nearly catastrophic, burnout 3 months shy of my retirement date. I’m 16 months into recovery, and vow to never mask again. F*$# the NT.
Your advice in the final section assumes isolation (or just stopping being ‘sociable’) for recovery. What’s your experience of human environments that are constructive, truly safe and conducive to exploring your real self, with others?
Hi Jonny,
This was written a fair time ago, so my thoughts have expanded a lot more since then – finding the time to write them down is always the problem!
With regarding environments that re constructive, truly safe and conducive to exploring your real self with others – I think it’s complicated, firstly of course it’s incredibly individualised.
Putting that aside you have to weigh up how deep into burnout you are – for some people spending time with other Autistics, in safe environments (which is what i gather we’re actually talking about) can be incredibly recharging. It’s always something I recommend all Autistic people experience, not only for self discovery through introspection and outrospection, but also because it’s immensely validating. In my personal experience, whilst in extreme burnout, despite being in an environment like that with safe people, i’ve found it’s actually set me back – maybe not as far as socialising with non-Autistic people, but still drained.
I think perhaps if someone were in a milder form of Autistic Burnout then it’s more likely that the recharging would occur.
Much of this is of course linked heavily to Masking alongside the day to day energy-sapping ness of life.
I’d recommend to anyone to see my suggestions as a guide, but to experiment and figure your individualised path through. Only you after all have your co-occurring conditions, your energy levels, your problems and so on.
Hi Kieran, I cried reading your article. I saw so much of my 14 year old son who is now struggling with Extreme Burnout. He has never formally been diagnosed but he has recently crashed as he transitioned to high school. He has been muted for several weeks now, no motivation, neck jerks, repetitive body movements, sleeping longer. It happened once before in 6th grade and we went from doctor to doctor trying to figure out what was going on. They looked to prescribe him meds which did nothing to help him. My heart breaks for him. I want to help him understand himself better. I wish he could talk to someone who could help him understand what he is going through. He is struggling to do schoolwork, he’s barely functioning remotely right now and I think it may be making things worse to make him continue. Is there anyone he and I can talk to? Thank you so much for writing this and bringing awareness. Best regards, Susan
Hi Susan,
I’m so sorry for what is happening with your son right now. Please be minimally at least assured that I and others are determinedly trying to make professional services and the general population more aware of Autistic Burnout and the causes of it too.
If you see this in time, this free event may be useful for you: https://aidecanada.ca/connect/events/details/autistic-burnout—2020-02-23
This interview on you tube may help you also: https://youtu.be/2cucCTpMieg
Susan,
I am sorry for what you as a parent and your son are going thru. I happen to stumble upon this article. You described the behaviors of my daughter as you described your son. I need help and support on how to guide my daughter. I appreciate any advice The Autistic Advocate can share and thank you !
[…] I am sure my family member enjoyed our time together as much as I did, but that does not stop me from wondering how well I communicated. Because somewhere at some point in time, an arbitrary set of social “rules” were decided upon (by the neurotypical majority). These rules are considered the “correct” way to communicate because autistic kids that do not follow the rules are placed in social pragmatic therapy or social skills training to teach them the “right” way to do it. Autistic adults that do not follow the rules are labeled as rude, blunt, awkward, or self-centered. Others are aware of the rules early on and start masking to blend in, but this comes with a cost. Masking is not deceit, it’s an attempt (often subconscious) to appear less autistic to avoid judgment and discrimination. Many autistic people do not realize how heavily they are masking until the mask is too much and they fall into burnout. […]
My son is 26. He,was diagnosed with aspergers when he was 9. He uses a combination of herbs and pharmaceuticals to help calm his central nervous system down.
All of what you have discussed is spot on.
I am grateful for your courage in sharing this. Will definitely share to my son and others friends on the spectrum.
Thank you for this. I honestly can imagine how hard this must’ve been to build up to, then the crazy flow which must’ve engulfed your mind once you finally started writing and re-living all those feelings and experiences… I’ve never read a better explenation and reflection of my own life… It’s so similar, in so many ways. Really, thanks again. Knowing this is real and not just in my head is a big step for me accepting who I am again.
Thanks.
David 🙂
[…] An Autistic Burnout by Kieran Rose. This one is long but should be a required read. TW: Suicide. […]
Wow, this resonates with me completely, albeit with differing presentation. Last year my burnout was huge; I shut down on my marriage, had affairs, couldn’t deal with the pressure to be married and to home school and to lose weight and to try and work. I would act out in crazy ways and then need to hide away, yet I couldn’t and so the masking went into overdrive and I was living separate lives depending on who I was with or talking to. The exhaustion was intense and when the proverbial hit the fan, I came off of antidepressants, started seeing a counsellor, and accepted that I cannot physically or mentally be all things to all people. I need time to decompress that I’d literally NEVER allowed myself, so when I did burn out it was a spectacular cacophany of inactivity and lethargy mixed with extreme ‘acting out’ and throwing my life away in ways other than suicide (which I had considered)
[…] https://theautisticadvocate.com/2018/05/an-autistic-burnout/ […]
Hello, my son was diagnosed at 8 he is now 12
and I noticed when puberty hit him for a week or more he shuts down
this happens monthly and I can tell when it’s happening.
is this autistic burnout?
he walks and walks all over the house ( i think he is stimming)
he is irritable and very anxious and takes him a while to sleep.
what can I do to help him through this time.
He is homeschooled and during this time I don’t make him do school work.
I give him his space
I am an undiagnosed Autistic, I know this due to my youngest son being diagnosed recently with Asperger’s. I try so hard to fit in and help my family, but recently I can’t get out of bed, don’t really want to eat and cry all the time.
I hit burnout I think January of this year. Worked at a bank as a credit analyst and we’re be day grew to dread it. Every call made me jump out of my skin and made my blood run cold. I couldn’t sleep, couldn’t eat and was constantly calling out or late.
COVID surprisingly was my way out but thingd are not better, my confidence I once had is gone.
Also it’s very hard for me to talk to or trust anyone outside of family, explaining not getting diagnosed, I have learned if you let people they will hurt you.
I don’t want to seem like a failure to my kids or give ANYONE a say in my life or question how I raise my babies.
Just needed to leave this here, hope someone understands.
Thank you so much for the depth and details you’ve given on a autistic burnout. I’m currently researching all aspects of autism, my son 6 was diagnosed 6 months ago and I’m always wanting to learn and understand more of how his little mind works but over the last 14 months his now 11yr old sister has almost overnight changed into a girl that I don’t recognise anymore, looking back now after learning about autism I realise she’s always had some traits like struggles with friendship and sensory with clothes and needing things in a certain order but I just saw them as her quirky ways, however since hormones have kicked in and lockdown came along she has totally shut down, can’t attend school because of anxiety, doesn’t speak or see any old friends, she’s withdrawn, generally in her bedroom all day and night doesn’t interact with family or show any interest in her appearance or general hygiene, you can ask her to do something and it doesn’t seem to register like she’s in another world etc. I’ve tried and tried to get help but due to covid-19 it hasn’t been very forthcoming, I also give her space I don’t push her and reading this has given me hope that when she’s ready and able to she will bring herself out of the little world that she is in now x
Thank you for sharing your story so vividly. I’m so sorry for how the world has treated you, it hasn’t been much better for me on this sided of the pond. Your story made me cry.
I’m 59 and self diagnosed a year ago. Twelve years ago, I tried suicide. Been treated for depression and anxiety many times, but no one has ever mentioned autism to me. I only figured it out as part of my endless struggle not to feel so awful.
Didn’t know much about autistic burnout until today. Found your story while researching autistic burnout.
I’m having a real difficult time of it right now. Worst it’s ever been.
I do have one resource I never had before. Nine months ago or so, I joined the Facebook group “Autism Late Diagnosis Support and Education”. Yesterday I posted about difficulties with executive function. A number of people said it looked to them more like autistic burnout.
Some twenty articles later, yeah, burnout.
[…] I’m autistic and ADHD, and I’m currently experiencing autistic burnout. […]
Thanks, it make me feel better
I stumbled into this world; metaphorically,
my eyes shielded by my arm
from the glare of Autistic gold
shining back at me.
I’m waiting for a diagnostic after what I think was a 3 years autistic burnout, horrible.. I have lost everyone… Tryinfg to get back to life and there’s hope, at least my doc understand… I have experienced the full shutdown last week, try to explain that to a loving father, i’m just the crazy son…
I’m going through alll emotions but I dont feel in danger in case someone care.
It has taken 14 months since my last post for autistic supports to move into place. I am still healing but better. I survived this one, regained 25 pounds lost, memory has improved, slightly less anxiety. My writing has shortened considerably as well. Thanks to all the people sharing their experiences.
I have just read your story, and I am in tears. My son is 15 years old, diagnosed at 12 years old after a 10 year battle with CAMHS etc. I want to help my son in every way I possibly can, but I don’t know how! 😭. My son has never liked school from the start, finally got an EhCP once diagnosed and I thought that would help him to live his life the way he wants, but I was wrong. Recently my son was diagnosed with first episode of psychosis, he his now on anti psychotic medication, anti depressants and melatonin to help him sleep. At the moment I think he his having an autistic burnout as he relates to mostly everything you have been through. He hasn’t left the house for two months, his so called friends have long gone because I could see they were basically taking the pi** out of my son as they tend to realise that my son is different after time (he has had many friends in the past but they don’t stay friendly with him). Anyway the psychosis they say is because he has been smoking cannabis (but I noticed same symptoms when he started high school hallucinations, paranoid, seeing/ hearing things etc) but I think it’s not that and it’s because he has been trying to fit in being a typical teenager girlfriends, getting up to no good etc. My problem right now is he his refusing to stop smoking Cannabis he says he won’t be able to live without it and it can’t change, it needs to be the same everyday. He was violent today because I wouldn’t allow him to have it, so he tried looking for his medication but I have hidden it. What do I do???😭 I will be informing the professionals, but they just don’t get it, they do not understand my autistic son.
You can also add is it CFS/ME, menopause, low Iron, over or underactive Thyroid, PCOS? All these symptoms can be these conditions. Some can overlap. Make sure you rule out other conditions before saying it’s AB.
Will attempt posting one more time 12 months later, exactly one year since the highly jaded post with severe autistic burnout. I had just received an autism diagnosis from neuro psychologist. It took time for the report to go to the right places. I have autistic support services now. I continue to heal from burnout but I am better with services and the accurate autism diagnosis. Memory, cognition and mood are better. Appropriate care and my situation changed. Every aspect of my life has improved with quality of life over 12 months. Relief with support.
Thanks.
[…] burnout is definitely a commonality that is disabling among autistic people and it impacts so many […]
I know this post is quite old, but I just wanted to thank you for writing this amazingly detailed article on this topic – which seems to be wildly underrepresented in most research I’ve come across so far. I’m 20 years old and undiagnosed but planning to seek help, seeing as I think I might be autistic – after many years of wondering, everyday struggles and extensive research.
From my teen years onwards, I have been to an incalculable number of doctors and therapists, all of which have “diagnosed” me with anxiety, depression and/or stress – but I’ve always had a feeling that something was off. And I’ve been suspecting for some time that what I’ve been experiencing are burnouts – going through a particularly bad one at the moment, too. So again: thank you. Thank you for helping me get a tiny step further in this process of diagnosis, understanding and acceptance, and thank you for sharing your story. Thank you for shedding some much needed light on this topic and helping people such as myself understand themselves better.
– A
Hi –Thanks for writing this, Kieran–really appreciate your story. Besides your own anecdotes, can you direct me to evidence confirming your descriptions? Has this syndrome been documented elsewhere?
Thanks!
Hi Lance,
Yes, actually. At the time of writing that post, there was only one research paper in the world. In a couple of years since we’re now up to 5 papers. All of which have strong foundations because of the work of Autistic researchers and Advocates. You can find out more here: https://theautisticadvocate.com/autistic-masking/
Hi Kieran. I’ve come across your post as I’ve been trying to find information to work out if my 80 year old mother is experiencing autistic burnout. She is undiagnosed, but my 18 year old daughter is autistic (and experienced burnout when she was 14) and there are a lot of similarities. My mum has experienced migraines all her life but is now struggling to recover in-between these episodes (and neurologists can’t work out what’s going on). Do you know anyone who is experienced with older people and autism? I would appreciate any information or contacts you may have. Many thanks
Progressively over the course of four years I completely shut down, it cost me everything and I didn’t know how to describe it to a psychiatrist except as “atypical depression” School, work, 3 kids including an infant, and a largely absent husband. Anyway, there were alot of factors, I was technically a human but I didn’t feel like one…or anything at all really. Took a divorce and 2 years of healing and I started to emerge. I’m fundamentally different, less capable I guess. Realizing I am absolutely on the spectrum has flipped my world upside down. It all makes sense, and I think in the future I can finally start to give myself some of the grace and forgiveness I deserve.
I was diagnosed two years ago and I haven’t really had much time to reflect on that because of my own daughter’s diagnosis and struggles, but recently I have felt exactly the way your article mentions. I recently joined a group that really helped me and guided me to so many links, including this one, that have been absolutely eye-opening. There is so much I need to learn about burnout and masking that this article has really helped me identify with, I have so many questions and so much more research to do. Thank you for this, like I said, this article especially has really been eye-opening for me. The way depression (my own included) can easily be mistaken for extreme burnout which is what I think I’m going through right now. It’s just all… amazing… I could really relate to it all.
After 25+ years of dealing with fatigue and more recently, digestive issues, and being treated for anxiety and depression (with SSRIs and tricyclics) it wasn’t until a recent ADHD assessment that the possibility of autism was ever mentioned. I didn’t want to hear about it at first, but it was a life-changing observation – the pieces are falling into place. I don’t want to go into details, but I’ve found invaluable the information that you and other autistic people put out, your life stories and experiences, and their advice on managing in a world not designed for us, so thank you!
Thankyou for writing this ! I found out I was autistic last September at the age of 27 years old. I was an absolute mess having been struggling with extreme burn out for months before my diagnosis. An autistic work colleague approached me the month before having noticed the signs of burnout. She was extremely brave; she came over to me and said I don’t know how your going to take this but I am really worried about you and I am fairly certain your autistic and having burn out. I was in absolute shock , I noticed she posted on the work fb page videos about autism as she posted them a few days earlier in the hope colleagues might become more understanding of her struggles. I watched it critically . I thought it couldn’t be and at first I thought she must have been mistaken but then It hit me . A massive reality check just hit me in the face with a baseball bat. It drove me manic I couldn’t rest unless I knew for a certainty and no amount of endless research was enough to quench that desperation. I paid £1000 for an ASAP private autism assessment . She was right and the worst part is when you look back it was so obvious. I really hit a bad spot when I had children. I had developed coping strategies but like you said when you have kids you can’t just rest and it all made sense why life got so much harder after the two children even though I love them to bits it’s challenging . This has really helped me better understand burn out and what I can do when I experience it .
For the first time in my life I’m finally starting to understand myself. I can’t thank you enough. I’ve watched videos, read blogs, but this was different. It completely encapsulated the daily struggles I encounter.
I only seriously starting considering Autism last week. I was diagnosed with ADHD at 25, but the symptoms didn’t exactly fit, something was missing. I was prescribed Vyvanse (70mg) daily.
Fast forward 5 years, with a number of burnouts. Lockdown in 2020 hit, my world turned upside down. Work from home? I was lost. Routine disappeared. Ended up having an intense meltdown, which erupted at work. I was referred to occupational health and then I quit. I knew I had to quit my ADHD meds, but I was so dependent on them to function like everyone else. My ADHD meds enabled me to function socially and communicate well, but only at my own expense.
Two years passed. Addiction set in. Ended up getting myself into some serious situations, where I was taken advantage of., resulting in PTSD. To be honest, I endured an uphill battle with bullying from 8 to 18. I told classmates things that I did not realise were sensitive, or not “appropriate” and it was used against me. Anyway, I digress…
I’m 35 now. I still struggle a lot with addiction. I managed 6 months sober last year, (2022) and two bouts of 100 days sober this year (2023), but I keep returning to stimulants (Adderal, Ritalin) to function at work and socially, with flatmates, friends and family, However, they aren’t effective anymore. They barely help me with work anymore, socially to an extent. I just have zero interest in any of my deep interests (making light installation) and the desire to sleep 14, 16, sometimes even 22 hours, is continuous.
But today I feel like there is hope. I’m not alone. This is autism. I am autistic. It all makes sense. I’ve never been able to pin-point it exactly and express how I feel, and practically everything in your article i can relate to, on a daily basis.
I definitely need to give myself a break. I need to prioritise me. Sod everyone else. Stop trying to fit in. And a much needed proper rest. Hopefully I will one day be able to begin unmasking around friends (I only unmask around family and I feel so bad about it because I barely have the energy to speak and often quite moody.
Honestly, Kieran, without this article I would not have had the full realisation that I am indeed autistic.
So thank you, from the bottom of my heart.
Chris x
I never comment on blogs and other article websites like this, but I will make an exception for this article because it explains so much. In 2016 I developed an extreme “depressive episode” when I was 13 that caused me to drop out of education at 15, with symptoms haunting my entire adolesence and its last remains lasting all the way up until 2021! Within that and after, I’ve also had shorter and less severe flare ups and episodes that’s occasionally peaked its head for a variad of reasons.
I think I now realise what these episodes have really been-
I don’t have an autism diagnosis, at least not yet. I was diagnosed with ADHD earlier this year but have always been speculated as a possible autism canditate, always slipping under the evaluations and tests however whenever I’ve been inspected by professionals. (This back and forth actually being a contributer to what I now recognise as my extreme 2016 burnout, ironically-)
Traumas from these evaluations and the systematic ableism that came from them have always made me in denial about being autistic sadly as a sort of spiteful coping mecanism, but I’m starting to recognise the truth that I might be less allistic than I thought, which was what caused me to end up here.
With that I guess I just want to say thank you so much for writing this article. It’s been a genuine eye-opener and have essentially solidified the truth for me that I have probably been autistic this entire time, plus explained a major part of my life and mental health running up to this point. I’ll probably still struggle with burnout episodes, hell think I might be dancing around one right now, but having a label for it is something I can’t thank you enough for opening my eyes towards.