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The Devil and the Deep Blue Sea

How Autism Burnout sits away from depression

Partly because of the immense gratitude I feel for all the concern and messages of support I received a few days ago, and partly because of my solidarity and commitment to my autistic readers, I felt a kind of duty to update my blog today. I also didn’t want to leave the last post hanging in the present because it was of that day and that day has gone.

After an online chat today with fellow aspies about autistic burnout and the confusion with depression, I have a renewed determination to get something, if not straight, a little partitioned perhaps on behalf of us all.

My last post 6 days ago (it seems like so much longer), was rather desperate.
But if I hadn’t written it down, I think I would have almost forgotten about that day – or at least quite how frustrated and paralysed I had felt. Soon after writing it I felt ashamed and embarrassed. How could I be so exposed? So powerless?
I was quick to move on and work on solutions for repair. I didn’t like that version of me and I didn’t post the piece to my front page but left it in the January archives to be forgotten. Nevertheless, I don’t regret writing that post. The difficulties we experience need sharing and airing and when we find others experiencing similar we feel a little vindicated somehow. So now I want to come back and share how quickly it was all over and how quickly I repaired.

One word I used to describe how I felt the following day was “stronger” – as if on the day of my blog post I had been somehow weak. But what keeps chiming again and again in my head is how strong I had actually been; how I hadn’t been weak at all.

I think it more appropriate to describe the way I felt as “battling”. You see, the very word “weak” must imply a lack of strength. A fisherman in a storm doesn’t wreck his boat because it or he is necessarily weak. A man killed by a tiger doesn’t die because he is weak. A grand old oak doesn’t become uprooted in a hurricane because it is weak. A woman doesn’t scream in childbirth because she is weak. Things hurled themselves at me, I fought, I became exhausted but I didn’t give up. I simply took some time to scream (metaphorically) and make it known that I wasn’t enjoying the experience.

What I was was honest.

As an autistic person, the main problem I have is actually telling myself to stop trying to be stronger. I am used to battling, used to finding everything hard work, used to being exhausted, used to having unexplained health problems. When I’m asked if I find something difficult, I don’t have the same reference points as the person I’m talking to: it’s all difficult. But I didn’t know that. I thought that was just how life was. Difficult is my normal.

What all this means is I have episodes or periods of burnout. And these episodes of burnout are similar to depression to look at from the outside. But it’s not the same. Not for me anyway. And, after having a couple of years being convinced I must be depressed, and reading other people’s experiences, and then eventually reading about autism, I can see significant differences – and not least in the solutions. I must add – importantly – that I’m not excluding depression. I can see how many people after years of struggling with autism are depressed, I know that depression hits people from every walk of life and I’m not excluding autistic people from those who might experience depression. I can see how depression and autism get mixed up and sometimes overlap. But they can also be separated.

I have anxiety. I have autism. I don’t have depression.
I get frustrated. I get sad, yes, but I don’t have the long periods of darkness, of despair, of the hopelessness that can be so dangerous.
I feel debilitated by social exhaustion. I feel overwhelmed by over-stimulation. I feel trapped doing things I can’t control or I can’t stop.

At the risk of sounding ungrateful, the advice people give me for dealing with depression doesn’t really work. And that in itself must be a clue.

I tried to think of an analogy for the way a burnt-out autistic person might feel and how the fix works, and the image of a hamster wheel came to mind (this might be because I saw one on TV last night!).

So let’s try this…

An autistic person pushing themselves for too long can feel as if they are trapped on a hamster wheel. They can run at good speed around and around and around. They’ll look as if they are doing well. But at some point they will feel like they really can’t go on any longer, and one of the first things you might notice is that they stop communicating.
A neuro-typical or non-autistic person might de-wheel, eat, have a chat with a friend, have a sleep and get back on again. When they do get back on (even if it’s something they don’t particularly want to do), they’ll feel the benefit of doing something else for a while and will feel re-energised by the socialisation. They’ll look for support from others by distracting themselves with chat.
Not so for an autistic person. Because of the sensation of never-ending movement we will find eating, sleeping and socialising difficult. Lights will seem too bright, noises will scratch away at us, and thinking clearly will become progressively more difficult. We will fear the hamster wheel and want to run away. There will be an overwhelming and overriding instinct that everything must stop and we must obey our instincts: get away from the noises, away from the lights, away from the people, away from the feeling of going around and around and around. Of course society tells us we must get back on the hamster wheel – so many of us do, but each time we do, we feel more and more debilitated and less and less able to function. The best thing to do is block out every single other thing in life and concentrate on the one and only thing we are not allowed to stop doing: the wheel. From the outside we look moody and unsociable but physically capable. This is because in order to concentrate on one important thing we have suppressed ourselves.

In my opinion this is where autism looks like depression and where it might, indeed, eventually lead to depression. But I think the significant difference is that it is caused. And there’s an almost formulaic process and reaction: Fighting back tiredness plus coping with sensory stimuli plus dealing with repeated socialising equals burnout.

When we were trying to work out why I was sometimes not coping with seemingly simple or enjoyable activities, I had some assessments with the depression and anxiety clinic. What they discovered was my reactions to questions (repeated over a period of time), and my attitude to life and myself did not fit the expected reactions of a person who experiences depression. But they were very much the reaction (and to the extreme) of an anxious person. My fear responses are so enormous and my ability to cope with life relies on so much hard work from my adrenal system that I crash every now and then. In fact I have to crash. Autistic people have to stop. I mean just stop. It’s complicated to put into practice because of modern life and the way society works but it is in fact very simple. It’s learning that and accepting that which are so very, very difficult. If you don’t know that it’s autism, you reach for something or someone to blame and depression is often the nearest fit. Sadly it’s often common to blame partners, friends, jobs and whatever is going on in our life right now too. The immense sensation that something is broken, something is wrong and something desperately needs to change, and change quickly, can have us ending relationships, packing in jobs and breaking valuables in our endless quest for a fix. Often a massive meltdown -including screaming, slamming doors and insulting loved ones, can give us just that fix we need, and leaves us with nothing but the all-important solitude we perhaps didn’t realise we were craving. It’s not the best way to go about it though.

My frustration at having to crash, stop, give up, back out, cancel and reorganise makes me sad. Sad: yes. And sometimes despairing. But like a bitter pill (and let’s face it, better than any actual pill), it works.

So, importantly, the fix is about letting go and being allowed to stop everything and not trying to add more and more in an attempt to make things better. The useful mood-lifting, adrenalin-giving activities we might get prescribed by our friends with knowledge of depression might actually be piling more on our already over-full to-do list.

What we/you/society needs to say to someone with autism burnout out is ‘You don’t need to do anything. It’s okay to stop. It doesn’t matter.’

And then sit back (sometimes at a safe distance 😉 ) and watch the steam escape!

When I felt the burnout last week, I did nothing for a day. Because we are all individuals, I can’t say what this period of “doing nothing” means for other aspies, but I do know that despite being called “doing nothing” it will be anything but. The brain will be very busy until it has offloaded. I wonder if it’s because we can’t kick out memories of recent events and conversations the way non-autistic people can or resign recent happenings to a deeper more distant part of our memory banks that this happens. We struggle to move on, to clear our thoughts and to wipe images from our visual memories. After a social event, for example, at which I may have performed very well and have enjoyed very much, I can still see the faces of people I have been talking to for hours or days afterwards. I can still hear the conversations, and certain spoken phrases will play out again and again in my brain. I can still see pictures on the walls, the expression someone made as we talked so that it’s like I’m still experiencing it. Perhaps this repeating means I need a longer period of processing and moving on than neuro-typical people. Maybe all autistics need a time for sitting still and letting our brain-wiring fizz out at as it crackles on at its own unique speed.

With this unique fizzing out delay, trying to continue to do things means we are adding more and more to the jumble and chaos already going on. And taking time alone is essential. Depending on the severity of the burnout and on the length of time for which someone has been coping, this time-out might be half an hour or a couple of days, but it essentially does not involve other people.

When I think of other people taking time off, I think of shopping trips at weekends, of drinks with friends on a Friday night, of meeting up with family on Sundays. I think of holidays in the sun with groups of friends and family, of restaurants, of airplanes, and all I feel is tired.

The only way for me to have time off is to de-clutter all the social activity I have already experienced and spend time alone. In the right situation I can often feel the release immediately. And the repair can happen quite quickly. This is one huge way in which I think this must differ from depression.

It should be so simple, shouldn’t it? I really hope with more awareness we can begin to make it more simple, more acceptable and more allowable because autistic people are misunderstood all the time. It’s okay to need our own thing, our own fix. The most common thing by far I’ve heard other Asperger’s women say recently is how difficult it is getting people to understand and how that has a knock-on effect on their own well-being, self-esteem and mental health. It’s not difficult once you’ve got it. It’s simply a case of accepting a difference.

With a brain constantly fizzing, we don’t get weekends off unless someone says ‘You don’t need to do anything. It’s okay to stop. It doesn’t matter.’

Not everyone will see the definition between austism burnout and depression I’m trying to make but if you can imagine a woman standing at the water’s edge, you can see how she’s not in the same situation as someone who is in the sea. She’s not in the water – she’s close – but she has her feet on the ground and she just needs to walk alone along the wet sand for a while.

January Fallout

I’m sorry to write another miserable post just about me but I don’t have anyone to talk to. No one ever offers to listen to me and people rarely ask me how I am, so I go for long periods of time winding myself up and getting confused about what’s what. I’m sorry if this offends anyone. I thought writing it here might help me to think about things. And I do understand how asking me how I am isn’t simple: I’ll either lie because I’m afraid or I’ll say too much.
I’ve become unwell since Christmas. It’s become harder and harder for me to stay asleep at night and every morning I am not only tired but really thick and foggy and can’t rouse myself. As if heavily drugged, I’ve been falling back to sleep again when I should be seeing our youngest child off to school (fortunately her dad takes her) and having bad dreams.
When I do get up I’m fed up that the morning is half over and I can’t grasp any sort of meaning or sense of achievement from the day. I have managed to bounce back day after day, and every night I’ve told myself tomorrow is another day. I am a surprisingly optimistic person. But it keeps happening and I’m running out of bounce. It’s now 11am and I’ve done nothing. I still have to shower and get dressed – which takes me an hour. I can’t stand losing days. I don’t want to get up late. I don’t know how to achieve something positive today and move on, and that’s not like me. I just feel angry and helpless.
I’m also having to watch what I eat because I’m really prone to yeast infections – they rampage through my whole body – and I react badly to sugar. So I’m scared of food at the moment and going through hunger and then impulsive eating and getting headaches and itching in my inner ears.
I’m sitting on the bedroom floor not knowing whether to do yoga, have a shower or cry.
I hate this so much, and I know it’s all because I’ve pushed myself and not had restorative time or activities. The trouble is “me time” and restorative activities necessarily involve me not being there for everyone (sometimes for anyone) or taking part in “normal” life. They are time-consuming episodes.
It breaks my heart that I must put in so much more energy just to do ordinary, everyday things that others seem to do easily, and go for so long being big and brave and grown-up, and that no one knows how it stretches me and chips away at my health.
I want to do the things I do (and much, much more), I want to be all the things I am to all the people I care about. But it’s clear I can’t, and today this is making me so very sad.
Some autistic people are obviously autistic. Some of us hide it – too well, perhaps. And I’m not sure that’s always a good thing.

Later….
I know that suggesting no one offers me an ear is not entirely true and will come across as insensitive, but it’s important to realise the enormity of the feeling that comes with the sense of loneliness and desperation when this low hits. There is an overwhelming feeling that there really is nowhere to go, there really is no one to turn to, and life is a solitary battle. All my life I have internalised my struggles and never known who to tell what to.
But it is part of a pattern too: this will pass and I will become unwilling to talk. I am not in constant need of therapy or a shoulder to cry on and I am unwilling to be seen as such.
This is about me, not other people.

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