Flat on the Mat

I’m tired from things I had to do – that you didn’t make me – you were just being you.

I’m all used up from pushing so hard – to get there, to be there, to go the nine yards.

Again and again the pull of the norm; the done thing, tradition, weathering each storm.

No one knowing how unnatural it felt to never have nothing but what’s in my head.

So quiet now is needed more than before to make up for years of locking its door.

Taking what’s needed like a famine starved hound and taking extra while hitting the ground.

How long can I lie here? Can it please be forever?

I don’t want to be like That again ever –

That busy and shaky and buzzy and tired, and hopelessly desperate because I’m not wired

Like you and like them and the ones who set rules. Who mingle in parties and offices and schools.

Applaud me for trying, for getting a first on how to behave though it made me feel worse.

But please understand it took more than too much and I’m not even me now it sapped me such

That here I am begging: “I can’t carry on but I can’t even tell you because it feels so wrong – To crave that much quiet and empty and slow.
And will you understand?
I really don’t know.”

We do not stand alone to get away from you; we stand alone to be ourselves 

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Being neurodiverse is like being a single oak tree next to a great forest of pine trees.

To live in the midst of the pine forest and attempt to behave as an evergreen all year round would be futile. The conditions are wrong for an oak. Being forever among the pines would be life-limiting and stifling, as roots fight for water, and branches fight for space and light.

But to live alongside rather than in the midst of the pines, to be a true oak; to rest after each long summer and to follow the natural patterns which are built within each living thing allows for stronger, more reliable and natural growth. It creates the perfect conditions for stability and better potential to succeed.

Being deciduous is not a weakness, it is a way of being, of growing, of recharging. It is not a developmental fault. You cannot grow leaves in winter if you were not meant to grow leaves in winter. You can glue leaves to a winter tree but you cannot stop them changing colour in Autumn.  You cannot thrive if imitation is forced

Let us stand alone. Let us rest. Let us be what we are. That is how we can keep coming back, oak trees seem to whisper in winter. And many autistic people will relate to this. We thrive on doing what comes naturally and instinctively. We do not insult you by behaving differently. We are merely surviving. (Thriving if we’re really in the right place)

Your fun thrills you and my peace thrills me.

While you are a rave on a farm, I am a picnic by the river.

While you are a rockstar on the dancefloor of a club on a Saturday night, I am a rockstar in the shower on a Monday morning.

While you are a whirlwind trip to a busy city with traffic smells and noises and bustling crowds, I am bicycle ride close to home with space and freedom and safety.

While you are shout-chatting above thumping music as the bass smacks you in chest, I am watching bees build nests as bluetits tsee-tsee in the trees, and the wind audibly shakes delicate leaves.

While you are feeling the excitement of pushing your body through white water, or high speeds or the thrill of chasing up and down great heights, I am feeling the thrill of catching a clear photograph, of seeing my first baby adder, of holding hands in friendship across a bunch of social networks and finding my tribe, my solidarity, my peace.

I am an oak.

Your forest is grand. I watch it from a little way down the slope and admire it. I know it better than you think and love it better than you’ll know. But I am not of that forest.

I am an oak. Let us stand alone. Let us rest. Let us be what we are. That is how we can keep coming back, 

We are both trees. And we are both rockstars.

Neither This Nor That: autism identity in a non-autistic world 

img_3016Being a mum and wife and helping run a business and a home, and being autistic has created two main versions of me: I can do busy, I can do efficient. I can do friendly, capable, organised. I can get up early and get through whole days without any me time. I grin and chat and duck and dive. It’s not that I don’t enjoy it, it’s that it’s exhausting. But this is the version of me every one likes and I push her hard to keep it up.

But it’s not really me.
Real me is holding her breath.

The lack of proper breathing space catches up with me though, and I begin to fail, to fall. It’s like I’m sitting on a cliff and getting closer and closer to the edge. Days get more difficult to wade through, I become clumsy, forgetful, insanely anxious.

I panic. And the panic rises.

Like a dog I pace and circle and look for a safe place to hide and be alone and rest, but the busy me has created a void where there are no safe places for the burnt out me. Every sound around me makes me twitch. Other humans become a threat. Not like paranoia but in a dutiful way, in a destruction of my peace way. I begin to loathe the sounds of fellow humans. My body starts to freeze up because the 2 strongest messages in my brain are “Run away from this!” and “Keep coping!”

Everyone around me is unaware of how much I’ve struggled and am struggling. I stumble and scrabble and I can feel the massive inevitable drop coming, and it’s horrid, it’s terrifying, and I really don’t feel safe at all anywhere.

Bit by bit by awful bit, events get more tedious, conversation becomes less possible, sleep fails, waking up fails. Pain comes. I run out of possibilities, I lose all direction. I can not go on. I am empty, biting my knuckles, unable to eat or drink and staring into space.

Help… I’m falling…

And fall I do.

I deliberately banged my head against the garage door 2 nights ago. I hurled my notebooks into the middle of the garden – my gardening lists, my household lists, the confusion of what needs doing. All these plans. Good stuff, bad stuff, who knows? What was I thinking? I was now incapable me.

I couldn’t do shit.

I’ve felt steamrollered ever since. Flattened. Hurting. Needing recovery. It’s a long climb back up and I’m not ready.

There shouldn’t be these two versions of me because neither one is right. The me that feels like real me pops up now and then but she makes me feel guilty. I’d love to let her live a full life and wipe away the other versions of me but I really really don’t know how to let her exist and be happy. She’d have her own pace, her own needs and they don’t fit this world.

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.