Mascara and Alcohol: when getting away with it got too heavy. 

mascaraeyeIt was the early two thousands, maybe 2003. I was still booking things, still agreeing to things, but in recent years had gradually begun to back out of more and more plans, and increasingly clocked up more no shows; strangely grateful for a child’s sniffle or a phone call to say things had been cancelled, and yet still in denial, still making excuses, still convinced I could do everything that I wanted to do. And still convinced going out and socialising was fun, was what I wanted. The tiredness or hormones of motherhood were making me enjoy home more perhaps? Being so busy in daily life meant I’d run out of time to get ready or the energy to stay out at night, right? There were well-argued reasons for every time I chose to stay at home. I would often truly feel ill when an event was upon us and I had genuine headaches, genuine stomachs problems. It all felt like real reasons and not excuses, and so the times staying at home built up and up and up like a brick wall. And it happened so slowly and I was so good at convincing myself that it was just this once we’d cancel, just this time we’d stay home because… because… Because, after all, going out is fun. Everyone likes it. Everyone. If you don’t there’s something wrong with you. Humans are social creatures. Fun, fun, fun times…

My grandmother had suggested I was depressed when she noted my increasing insistence for staying in, staying home but I looked at what I had and I was happy with my lot. And I could always always reason my actions. Until that day, one Christmas holidays, I was sure I was making my own choices and was in complete control.

It was the Christmas period. I’d booked pantomime tickets for what was then the four of us plus my parents. Getting ready for Christmas as a whole was difficult for me, it left me in a constant state of list-making, obsessing over minutiae, sleepless nights and panic, and the extra socialising completely drained me. I had to drink a lot to cope with anything social. I thought it was the same for everyone but I was chaotic for weeks, and every moment was taken with pinning down my panic and attempting to appear organised. I did appear organised but appearing organised was actually all I managed. It was a performance so convincing I managed to carry it off for years. I once admitted to being shy to a friend and she laughed and said “You’re not shy!” I really had pulled it off! So I just kept turning up for things and drinking and talking crap. I remember telling one of my Open University tutors that I got through Christmas on mascara and alcohol, and she told me I should write a book called Mascara and Alcohol. Maybe I will.

As our children were still young, I’d booked matinee tickets for the panto. Already in a flappy state (I didn’t know I had anxiety. I wasn’t even kind enough to give myself the gift of a label those days. All I knew was that things made me flap, made me worry, made me stressful. I got stressed. I stressed out), I found myself getting hotter, trembling, focussing on negatives about my appearance, obsessing about a pimple, unable to draw that line that said “finished getting ready” and walk out of the bedroom, downstairs, to the front door. I’d got the children ready, given my parents a picking up time, my husband was downstairs ready and waiting to start the car. I’d organised every thing and every one but I was Not Ready. I would never be ready. I couldn’t complete getting ready because that would mean leaving the house and I was trapped inside a forcefield that was insisting I stay home.

I’d met that forcefield before. Once as a teenager when cycling to a holiday job I cycled into the forcefield and it span me around and I found myself heading home again. At the age of five I refused to leave the house and go to ballet lessons because I knew I simply couldn’t go. I loved ballet but I never went again. I danced alone at home instead. Forcefields existed around doors and I couldn’t walk into certain rooms or areas at school.

But all these years later I still wasn’t joining the dots and putting together the picture of someone who physically and mentally couldn’t socialise regularly.

Upset, my family went to the Panto without me. Upset, I stayed home alone. I was relieved and comforted by the escape but incredibly upset.

What had gone wrong?

I’d done what I always do when going anywhere: I’d been in control of planning everything, I’d chosen in advance what I would wear, I’d pictured us there, I’d placed myself in amongst many people, imagined the claustrophobic crush in the entrance, pictured sitting under pre-performance lights, pictured people sitting all around us, imagined being spotted by people we knew, people we half-knew, people I couldn’t remember because (as I now know) I have a degree of face-blindness, imagined what I would say to people, realised I didn’t know what I would say, and knew deep down that I wasn’t going to cope – some other time, yes but not this time. But it was deep, deep down and I wasn’t really sure what was controlling my actions. My subliminal knowledge that I’m not coping or that I won’t cope often simmers away in the background until I meet that damned forcefield, and WHAM! – can’t do this. This one event in itself was not a big thing but everything else had circled around and around until I felt that just doing this one thing was like entering a black hole.

That day was a biggie for me. I’d let a lot of people down. And I haven’t been able to trust myself since. Other people in my life no longer want to take the risk with me either and I’m rarely invited to anything. I’m not entirely sure what I want to risk committing myself to anyway. My husband will never plan surprises for me because he too doesn’t trust me. This is not necessarily a bad thing because he’s not a fan of too much socialising anyway, and I think his habit of being a grumpy, unsociable git at times is what attracted me to him!

So these days what I want to do and what I’m able to do sometimes overlap beautifully like a Venn diagram, and sometimes they stay firmly separated in their big old lonely circles. Often I will put myself through what is uncomfortable because it’s probably what’s best, other times I will actively seek out peace. Lying awake at night after an event (sometimes for weeks or years afterwards) and remembering how you cocked everything up is no reward for pushing yourself through something. It’s hell and it’s not worth the pain of clocking up yet another bad experience, yet another disaster. So instead it’s a lifelong project of daily self-assessments now. This self-awareness has given me a more joined-up picture of someone who has to carefully measure and weigh up what’s going on, what’s necessary and what’s doable on a daily – sometimes hourly basis. I have to give myself permission to make plans for fun things but I also have to be able to admit that not doing something is also okay and sometimes crucial. And I have found comfort and beauty in just being and not always seeking outside experiences. I do like time at home. I like it a lot. It’s not just something that I have had to force upon myself. It’s often something I have to fight for.

At a wedding a few years ago, I was struggling to cope and someone next to me was involving me in conversation. After a while of getting limited response from me she turned to her companion and muttered something about “…so rude…”. I’m not rude. I spend my whole life adjusting myself to people and situations in order to not be rude. It’s exhausting. Why push yourself through things if you’re so overwhelmed you’re just going to appear rude? Humans are complex beings (no shit) and we can respond very differently to different situations, and there’s nothing quite like feeling trapped in situations that other people clearly find fun and enjoyable.
There’s something about socialising less that makes you look like you’re coping less. But I’m not coping less these days; I’m just coping differently.

To tell or not to tell.

Last night I dreamt someone I was chatting to had offered me a job. He said he liked my attitude and my intelligence and knew I would be good at the job (I don’t know what that job was). Although it was someone invented by my dream, I was supposed to know him; it was someone from my past who I hadn’t spoken to for a few years. But the important thing to note is that based on past knowledge of me and a current conversation, he saw something that would be an asset to whatever this mystery workplace was.

What happened next was very close to how I react in real life: I panicked, I stumbled, I felt the answer was probably no thanks but didn’t know which part of me, my life and my personality I needed to extract in order to say no. The first thing I told him was that I have Asperger’s. It wasn’t the first thing I wanted to tell him but it was going to lead on to how and why I get exhausted easily and how and why the way I’ve arranged my life and what I do suits me better than being employed in any regular conventional way. The real truth is that I have work, and I am busy. I don’t currently have time to do anything else anyway. But me being me, I can’t separate out what’s needed and what’s not. To me everything is connected. Everything is significant, everything is important. Once I’ve heard myself say something I usually know then which bits I’d like to erase and which bits I’d like to leave in but my first reaction is to say everything that’s forcing itself to the front of my mind. (Well it’s that or nothing. Saying nothing is my other cool trick).
The person in my dream didn’t wait for me to finish my sentence though or for any other explanation. The word “Asperger’s” immediately had him physically backing away uncomfortably and nodding knowingly. I continued talking and explaining and yet he raised his hand as if to say no further explanation necessary. He feigned listening politely but I could tell he was gone. The offer was gone too. Someone who 30 seconds earlier had seen me as capable suddenly saw a liability.

Everything faded and I woke up.

Why did I tell him that?

Why do I tell people? Even in real life I tell people. It’s all over my blog, it’s on my twitter bio; when I first completed my autism assessment I wrote an open letter to the world. I wanted everyone to know. I guess I needed a “Well done, you. You’ve coped with so much.” I guess I also needed to self-obsess for a while. I’d spent a lifetime avoiding talking about myself because I couldn’t pin myself down. At the time it became the reason I had found life so hard.
But it’s not the only reason I find life hard and by no means does it make everything difficult or impossible. People told me it didn’t change me and it didn’t change who I am. It was an affectionate way of saying they knew me and still cared about me and wouldn’t look at me any differently. But it does change me and people do look at me differently and people do assume I have certain limits without even bothering to ask me.

Next time I get offered a dream job (<- autistic person doing humour), I’m going to be flattered and concentrate on the positives: someone’s noticed I have talent! (God only knows what it is!) But I’m also going to point out that I’m doing lots of things already and thanks but no thanks.

And by the way, man in my dream, I wouldn’t want to work for someone who sees autism as a liability anyway so I’d say I had a lucky escape.


Practice Makes Low-functioning

shutterstock_25179976There’s a common belief that encouraging people to do things they are uncomfortable with or afraid of will eventually make those situations more comfortable and help them do them more willingly in the future. There’s a common belief that autistic people are incapable, flawed and afraid, and can be taught to function better, to be more outgoing, and perhaps to enjoy life as others believe life is to be lived and enjoyed, and that the way for autistics to get more out of life therefore is to repeatedly get them stepping out of their comfort zones.

After a lifetime of trying them out, I can say that, for me, these theories are bullshit and damaging. Furthermore, it’s ableist to apply standardised ideas of a well-functioning existence so generally.

The problem with this theory of pushing, of “facing fears” and of introducing repetition to familiarise a situation to me is simple: It’s often not that I am frightened, it’s often not that I am unfamiliar with a situation, nor that I am inexperienced; I am usually very well aware of what a situation will entail, I am competent at most tasks and situations, and I am very often not nervous but I am in fact burnt out when I am being expected to push myself further. And as the years go by and the number of times I have pushed myself beyond the natural grows, the burn out gets worse. Nothing gets better. If anything, I would say that after years of acting and getting that performance just right I am actually regressing now.

I simply don’t want to do things because I am empty.
And repeating things that push me out of my comfort zone doesn’t challenge me, it doesn’t educate me in the ways of a better life, it doesn’t enrich me, it doesn’t build my confidence either. The one-size-fits-all Cognitive Behavioural Therapy I began a couple of years ago wanted me to deal with everything that made me anxious so I could be less anxious and get on with my life, but I’m so very tired of that deal with it approach.
I don’t ever step back after an event and say ‘I’m so glad you pushed me to do that, thank you.’ Never. I mean never ever. I simply don’t say it and I never feel grateful. Because what this behaviour actually does to me is chip away at me. It wears me down, steals my resolve, and leaves me struggling to recover. It really is quite ridiculous to force a person to do things they are not happy doing. If I want to sit in a corner and not stand in the middle of a room chatting, let me sit in a corner. I’ve figured out after 45 years that it’s preferable for me.

I’m clever, I’m able; I can pretty much do most things. I’m one of those invisible, autistic women who look and sound normal. But I am not normal. I have limits.

I have a natural, inbuilt need to socialise less, to regress into myself more, to make my own rules, have my own timings, make my own challenges and to wander off on my own at times. This natural version of me is not allowed to show through enough though, and I’m out of my comfort zone pretty much every day while others satisfy themselves that I’m leading a pleasant, functional life – I am described/diagnosed/labelled as “high-functioning” after all.

I was a child once. I made myself fit. When I saw that any of my behaviours risked making me look quirky or abnormal, I suppressed that behaviour. I made myself a thoroughly respectable version of a highly functioning individual. Only I didn’t realise what the long-term and ongoing effects of years of pushing oneself out of one’s comfort zone would be.

We autistics have our own ideas of functional and functioning well. And they are not the same.
Functioning well for me means feeling sane, feeling happy, feeling a sense of achievement – and one that I have judged as an achievement not someone else. It means having a quirky routine, an empty social diary (whatever one of those is), feeling a sense of control over myself, and at times feeling led by imagination and the paths of thought that lay themselves out before me rather than being led by a clock. For me a “full life” in conventional terms sounds like hell. And I can tell you it feels like hell too.

When you see someone who is autistic performing well, functioning highly – acting just like a non-autistic person, ask yourself how hard they had to work to get that performance just right for everyone else, ask yourself just whose idea of high-functioning you are using here because there’s a good chance it’s all fake and they can’t wait to get home and throw off the pretence.

Wouldn’t it be better if we could stop trying so hard to not be ourselves…?

Quiet War, Inner Noise

I’m a fighter.
I fight bloody hard every day.
I’m very good at it.
I’m so good at it you mostly can’t see the joins.

It’s hard work but it’s worth it; the people I love are worth fighting for. I arm myself each day for what is to come and I refuse to be defeated.

I do need to recharge though or the seams occasionally begin to show and my stuffing pokes out, and I don’t need you to see inside me unless you want to. I don’t impose my inner self on others unless they choose to see it. You will see the result of the fight and not the war; I try to give you the peace beyond the battle ground.

I can stop fighting and stop trying and be just me for my sake but I don’t want special treatment, odd looks, different types of relationship because of my fight. I want to blend, appease, fix, help and partake. I want what the fighting brings me. It’s all so worth it. It’s all so bloody worth it.

Most of it.

Things that break into my recuperation are often one battle too far. Those interruptions are the deepest cuts to bear. I have my limits despite my determination. Whenever I am reminded that my fights are not always appreciated and blending isn’t always possible, I hurt so much. When you are carrying out “normal” and “ordinary” from a toolkit containing a different set of tools, you need to try harder to make them work. But I’m used to it. Literally and metaphorically I have always been the type to use what I have and not complain that I don’t have the right tools.

You don’t need to know about this if you don’t want to. I’m used to this hairbrush-instead-of-a-hammer life. And I know it’s a bit difficult to think how different it can be.

I know deep down I’m doing my best, like now: I’m drying my tears, shoving my stuffing back in and soldiering on.

Autism: Noise hurts me. But not like you’d think

A lot of the “problems” of autism – or, more to the point, autistics trying to operate in a neuro-typical world – could be put down to timing rather than incapacity or incapability. I see that I react in much the same way as other people and I feel the same things as everyone else but I feel I’m operating on a different time scale. Processing can take a while if there’s too much to take in – it’s not a fault: I think I am taking in more so I see it as a blessing but it can make us look weird or unresponsive because we’re being distracted or over-stimulated while we take in detail.

Empathy is a good example of this confusion about whether or not we’re reacting “correctly” and I think I’ll save that for another post.

What I’ve noticed about myself is how sounds slow me down. Other autistics talk about sounds hurting them. To me they hurt emotionally, they hurt my operating system; they don’t hurt my ears in a physically painful way. Many other sounds don’t offend at all they are simply distracting. But some sounds irritate terribly. An irritating noise to an non-autistic can be magnified in my ears. Certain pitches are overwhelming. I am disturbed by scratching noises or skin rubbing together for example. Being distracted slows me down and I find when I’ve recovered I’m out of step. I’ve spent my life avoiding holding my hands over my ears and drawing attention to myself but now, at home, if I’m upset I will cover my ears.

So I wrote this thing

I Hear That Too.

‘Yeah, I hear that too. It irritates me too.’

Yes but I am consumed by it.
I am paralysed by it.

It taunts me.
It prevents me.
It upsets me.

I have lost my concentration.
I have lost my train of thought.

I feel under attack.
I feel hurt.
I feel offended.
It feels deliberate.
It feels cruel.

When it stops, it will haunt me.
It will ring like bell
It will repeat like an echo.

I will wonder ‘Why?’

I will wait.
I will try.
I will feel bruised.
I will lose time.
I will give my all to get back to where we were.

I will be waiting for it to happen again.
I won’t be the same.

No matter what you say.

‘It was just a noise. It’s over.’

Is it?

Maybe in your world.

How to be a Kettle and Talk to Onions

shutterstock_139529804Women with Asperger’s and autism slip under the radar again and again and again. We are so bloody good at “pretending to be normal” that we get away with it even when we shouldn’t and should instead be living a far less anxious existence.

If there were ever any doubt that I am not normal, today I squashed that flat.

I broke something precious for the first time in ages just to try to break a cycle and find some peace.
Usually I am an eternal sock-puller-upperer. And I am a professional protector. I feel it my duty to not drag people into what I am going through. This doesn’t mean I lie – if you ask me I’ll be honest, but I will do my best to protect people from the raw state that life has often left me in, and pick words that will cause the least damage. It’s not entirely successful but the times I have battled and won far outweigh the times I’ve caved. Feeling I need to punch my way out of a box is common for me but I pull up my socks, take a deep breath, strike the Warrior Pose, and think seriously about what’s worth making a fuss about and what’s not. My guess is that I have about a ninety percent success rate of busting through a day unscathed, and, importantly, without letting any scathing show. Yesterday, for example, I shouted, ‘I’m not finding this even remotely funny!’ at two onions when no one else was about, and spared the more sensitive creatures of the world my troubles. I know about protecting people, about putting people first, about internalising and keeping the peace. I mostly feel practical, productive and caring, and in tune with the world around me.
Apart from a couple of minor differences such as not driving and not participating in school-gate chat, I’m a fairly typical woman and mother. I often wonder if we made a mistake and I’m neuro-typical after all.

But then come the days when I remember the world is not my oyster, I am not free to make long term plans like everyone else or stick a pin in a map and see where I end up, and live a life being thrilled by surprise and adventure. I am at the mercy of Bad Sock Days and no amount of shouting at onions will help me. I take my adventures on a small scale, short-term whim: in the kitchen, in the garden, in my online book purchases. When I step away from my limitations I am taking enormous risks and the sense of failure gets to beat any sense of “at least you tried” far, far, far too many times to make many risks really worthwhile. Besides I don’t get the same thrill that other people describe. Life is adrenalin-fuelled every single day anyway – I don’t need to force it. Quiet days are my adventure.
So I’m mainly happy that I’ve found some way of combining control, happiness and being the best person I can be for my family whilst retaining a great deal more peace than I think many autistics achieve.

I can’t remember the last time I cried and deliberately broke something – I can go for long periods of time being very restrained, and for an autistic person I believe I do the internal talking to stuff very well indeed (I read somewhere that autistics are really bad at this. Please tell me if you think it’s not so). I pride myself on my ability to hold it all together and keep on keeping on for long stretches of time. Since I was very young I’ve almost pulled off conventional and I’ve been working hard at it ever since. I’m so very nearly a natural now. I occasionally see a flicker of “What was that?!” flash across someone’s face; only for a moment though and then I’m back to getting away with it. I adjust and readjust to fit others’ needs and am on alert for what those needs might be all the time. I’m often seen as less weird than “normal” people!
I seem to have a knack for putting my own needs aside for days. Other people’s happiness gives me happiness and I strive to recreate that satisfaction when I can. One of the stereotypes of autistic people is an obsession with a special interest to the detriment of all else and a tendency to bore others with that obsession. It doesn’t present in me quite like that. I do have a project-minded brain and I can obsess about all sorts of things but I mainly obsess about people and home-life, and spend my time organising myself around those. I enjoy listening to other people too and hearing about their lives. I am a quiet observer. My decisions about what to do every day are based on what is needed of me and I readjust this regularly as things change. It’s not something I have to think about too much and I’ve always had good instincts for my children’s needs. As parents, our struggles and rewards are the same as anyone else’s and we are pretty conventional and do pretty conventional things with our kids.

But today I felt so trapped and frustrated I didn’t know what to do and I knew there was none of that keeping on stuff in reserve. I felt life was picking on me, preventing me from having fun, I felt I was unable to appreciate a day with my family because something more powerful than my wishes, my plans and my organising – something even more powerful than night turning to day was controlling me. You can make it Monday, you can make it my husband’s day off but I can’t have it. There may as well be no Monday.
It looks, from the outside; I’m sure, like a child angry at not getting her own way. It feels more like a lone battle and a desperate grasping to regain control of myself. There’s an intense frustration in having no control. The inability to put one’s finger on exactly what is to blame is, I suppose, infuriating but there’s no real anger – just an immense physical fighting instinct whilst simultaneously longing for peace. Wanting to bat away a mosquito, perhaps, only there is nothing there but the knowledge that something is after me. So what the hell do I bat at? I have to feel I’m doing something in my defence. The loneliness and helplessness and a sense that this is a journey I am taking on my own and I don’t want to go on has me running in circles trying to find a place of calm away from the turmoil but it hounds me. I want to tell someone, I want to talk about it but I’m an adult, I’m a mother and moreover there is no reference point for what I’m feeling. I’ve never heard anyone talk about this situation before. It’s all “why?”s and no answers. Add to this a history of never talking about this to anyone ever in my life and I’m left with mental energy and physical energy formed from an urge to escape rather than an enthusiasm for anything. This useless energy and the need for everything to stop leaves me with an urge to throw something. Throwing seems to give me a sense of hurling the unwelcome, unproductive energy away from me.
I didn’t want anything from anyone, I wasn’t cross with anyone so I chose things. Unfortunately today I chose my iPad to throw because of the sound it would make as it hit the radiator.

Now I’ve had a little time to think about it, I think I know why it happened today. I think I was waiting until it was safe: until there was another adult in the house, another adult to take my place. I could go and throw something alone and away from everyone. I think this morning’s meltdown has been building for some time and there are probably allsorts of triggers. I don’t really know. I never do. It’s all guesswork. All I know is I couldn’t do anything until it was over. We had made plans, but I had to step out of them. I had to admit I couldn’t be involved. I tried to put my feelings and reasons into words but I couldn’t. I paced as I waited for everyone to leave the house, I distracted myself by grabbing clothes from the wardrobe and piling them onto the bed in some kind of pretence of a clearout. The constant physical movement and using up of energy was useful if nothing else.

When everyone had gone and I felt the silence, I walked around the empty house, tears flowing so fast and hard that my face hurt and I was temporarily blinded. I had to stop and sit down to cope with the physical exhaustion heavy crying brings. As I sat waiting until I could move again, I noticed a noise like a whistling, stovetop kettle just as it begins its crescendo. I always found that sad murmur just before the whistle disturbing – to me it sounds like a wounded animal. I realised the noise was coming from my throat. I missed my family, I wanted to be with them, I didn’t want days like this, and I didn’t want to subject them to my turmoil either. What I really wanted was to belt out the emotional pain I felt but instead I had trapped it inside my throat.

When I see caged animals running themselves at the bars of their prison, chewing on themselves, repeating a head movement rhythmically or pacing in a small space, I recognise the pattern of a living thing that has had to contain one or more instincts for too long and has been forced to live a life they weren’t completely designed for. I recognise the need for something physical – even pain to create a release. I recognise the powerlessness, the feeling of being trapped, of not being able to run away. Of no other choice.
Some captive animals may perform better than others. Believing they have all their needs met we can be fooled into thinking their lives are good enough. But we are always forcing them to be something for us, and therefore we are not being entirely fair to them.
But what about animals born in captivity – those who know no different? Or maybe they do…? How much do they sense or feel that life is somehow not as it should be?

I think autistic people are like animals born in captivity. We are always forcing ourselves to be something for other people and therefore we are not being entirely fair to ourselves. And unwittingly other people are not being entirely fair to us. We are trapped in systems where society cannot be rearranged for us. Instead we have to rearrange ourselves constantly for society.

It’s impossible to describe to a non-autistic person why we don’t do things we want to do. Why we turn down fun, why we let people down. Sometimes the most simple yet pleasant experiences seem impossible, and how on earth can we explain that?!

Taking it right down to the most basic human needs might help perhaps. Sometimes it’s even impossible to eat: to carry out the everyday function of fetching food, lifting a fork to one’s mouth and then swallowing – let alone digesting. Similarly, it can be impossible to sleep sometimes. It feels as if everything has to stop while some other mystery process has to take place, perhaps.

Sometimes things are cancelled, sometimes offers are simply never taken up, sometimes things do happen but they are awful and I don’t cope. I can’t decide whether it is a day to talk myself into or out of something. I juggle with different reasons regularly and struggle to decide which reason it is each time.

There are four main reasons I can think of:
The Anxious Excitement Reason. I am looking forward to something so much that my cortisol goes bonkers and I experience the same symptoms as fear. Even when I know this is the reason I become anxious about my anxiety and can’t remember why I wanted to do the thing in the first place. Pulling out would mean an end to my symptoms and I would feel safe. This is usually the only time when I should consider pushing on through and taking a gamble with my anxiety but it’s a fine line and there are times when staying home really is best for my health. It’s a hard one to explain to people and is the one that causes the most upset. For weeks or months (even years) afterwards, it’s often distressing to try to deal with my decision. People simply can’t understand.
The Social Exhaustion Reason. I have already pushed myself through things that have drained me and overloaded me, and however much I want to do this thing (or not) I am exhausted and don’t have the energy to make it happen. It’s just not possible and I know I will have no words left in me. I may even be mute for a while.
The Uncertainty Reason. Some thing or things about the event will be so unfamiliar or out of my control that I can’t cope with all the unknowns and I can’t foresee how I will react to situations for which I haven’t planned. If I don’t know exactly how or when I will be getting home I panic about being trapped, for instance. I also fear my own performance and know I will probably not cope. Again I become anxious about my anxiety and everything becomes about trying to feel well.
The Meltdown Reason. For me this is a rare and rather frightening one. It comes like lightning, shocking me and terrifying me when it arrives out-of-the-blue. Rather like pre-storm heaviness, I can feel something building but I’m not aware of the extent of my agitation until something has gone wrong. And it can go wrong quite quickly. Because my concerns are so foreign to the rest of the world, I am not able to voice or communicate them, and I am left at the mercy of something extreme. Usually a fairly eloquent person, I find words in short supply while a physical and mental pressure bears down on me. For the sake of other people I try to find words, but they are all wrong and I hear myself say things I’m not thinking. They are just spare words. Spit words. Missiles. Somewhere deep within me there is a tiny guiding force telling me to get away from other people and give up on communication for while. This reason is complicated. It is an entity all in itself. Another character perhaps. It sits on the chest of who I am and who I want to be and what I want to do, and says, ‘No. No. You can’t move. You can’t do this, that or any other thing.’ The energy is different. It’s less anxiety and more frustration. My guess is that it comes after anxiety and is some kind of fallout I’ve stored until I’ve stored too much. It is perhaps a useful and healthy release to give my body a break from all the internalising I have to do. I know very little about what is happening. All I know is I can’t do anything until it passes. Fortunately it can pass quite quickly if I act. I hate it and I fight it. It always wins though. I have to give up my right to decide to push on through and give up my right to choice and simply let go.

The way I make choices, therefore, cannot be the same as for most other people. Sometimes I simply can’t make choices. I am not allowed to. The world as it is – as it was designed by other humans – is not mine in the same way it is for other people. I have to repeatedly stop myself from making any kind of long-term plans because I know I am not consistent.

So today I am missing something I was looking forward to, something I would have enjoyed. Returning to my captive animal analogy: some days a banana through the bars of the cage may be the most delicious most-welcome thing and I desire it terribly – so yes, the “It will be nice and you would enjoy it” argument is true to a point, but a day chilling out in the rainforest is even more necessary, and when all is said and done, I must bow to the instincts of the caged animal who has missed the world she was taken from and is not looking for thrills and enjoyable experiences all the time but for a peace that can only be found from following one’s instincts.

The times I’ve written about bad days, bad experiences, the bad stuff about having Asperger’s far outnumber the times I’ve written about the good days, the brilliant days, the mediocre days. And yet the good and mediocre days are the ones that really fill up my life. They are about getting on with stuff and are often really rather boring and normal to read about. I tot up minor struggles with noises, lighting, smells, busy shops, too many people talking at once, and live with anxiety daily if not hourly, but I accept that this is my life, this is my normal and I internalise and find ways around things. I cope, and my life is mostly boring and normal – and for that I am grateful. But I think it important to share with other autistics – and anyone else good enough to read this – some of the difficulties we experience, and try to put those crashing days into words so that people like me don’t keep on feeling we have no reference points for our lives and experiences. There’s stuff going on in our heads that no one understands anywhere near well enough yet. We don’t even understand it. It’s time understanding moved forward a bit faster, and what better way than reading about raw feelings and actual experience as it happens rather than only ever picking up a textbook written by experts who are not autistic, or a humorous novel based on mocking autism stereotypes?

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Autism Reframed

#AutismisNotaCrime Flash Blog

Autism is not Unfriendly Twisted Inhospitable Sociopathic Monstrous

Autism is Unusual Thoughtful Introspective Sympathetic Mindful
My Asperger’s is quiet, reflective, loving and observant. I love her very much and I’m glad we found each other. I feed her with photography, facts, creativity and words; nature, plants, flowers and open air; projects and quiet time.

What do you feed yours?


This flash blog was prompted by this post by Gretchen Leary: Flash Blog: Autism is Not a Crime and very much inspired by this post: #Autismisnotacrime Flash Blog by Musings of an Aspie

People with Asperger’s and Autism are suffering – again – because of the way lazy media write about us ignorantly.
As Gretchen writes: ‘Stop spreading lies … for the sake of a headline.’