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.

Inconveniently Alright

When I’m here BEING ME, doing what gives me PEACE:

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– challenging myself, thinking, doing, exploring, observing, taking note, playing music, sometimes writing, sometimes not, feeling NORMAL.
When I’m going from one task to another, being PRODUCTIVE, being USEFUL, finding FULFILLMENT.
When the day runs smooth and the hours don’t gallop or groan.
When nothing seems or feels WEIRD or DIFFICULT or TOO MUCH.
When I have CHOICES and FREEDOM and I can BREATHE…

Then.

Then I think WHAT DISORDERS?
No – really – WHAT DISORDERS?
What do they MEAN?

What’s WRONG?
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What IS wrong?

What is all the FUSS?

I’m okay. I really am.

Why is this world designed for people to NOT be THEMSELVES?
For ALL KINDS of people to NOT FIT?
For people to HURT?

Why would we rather fill the world with words like DISORDER
And BROKEN
And WRONG
Than DIVERSITY?

It is
The way
It is
– they say

But it’s not JUST the way it is.
It doesn’t HAVE to be so.

It’s only the way we’re LETTING it be.
The way we MADE it be
And dressing it up as NECESSARY
Instead of letting people BE.

It’s INCONVENIENT having to think around me.
And TOO SCARY to imagine I might be RIGHT.

So, for now, I am DISORDERED
TIRED from making myself fit where I don’t
When I DO KNOW where I DO fit

I just KNOW
I’m okay. I really am
And life’s about VARIETY
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Well it’s supposed to be anyway


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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The Freaks’ Guide to Feeling Normal*

(*where both “Freak” and “Normal” are overrated)

shutterstock_91734881When I was a schoolgirl living at home, I was the only girl in the world who lived in a house with a compost bin and whose house smelt of tealeaves and orange peel; the only girl who had 2 teachers for parents; the only girl whose clothes were washed in non-biological washing powder and hung to dry in the dining room (oh, the shame!); the only girl who wore her sister’s hand-me-downs (even though my sister was shorter than me); who lived on a hill and not in a normal street and didn’t have any friends close by; who didn’t go to Greece or Crete or Spain or Corfu or the Canary Islands or the South of France on holiday, and instead who had to visit cathedrals; whose parents didn’t have a car and who had to travel by foot or bike or bus or train; the only girl who was tall and skinny; the only girl who had a room so small there was nowhere to do my homework; the only girl who bit her nails; the only girl who was shy; the only girl who had more books than pets in her home (don’t get me started on the pain of no pets allowed…!); the only girl with no brothers; the only girl whose mother didn’t run around with the hoover/shopping/cooking/ironing/washing going all at once and instead took Open University courses; the only girl who learnt two musical instruments and sang in a choir; the only girl who didn’t have all the most up-to-date electrical gadgets (I think we were the last people in the world to get a TV remote).

It was hard to put my finger on which of those major, major differences was making me feel like a freak but it had to be at least one of them. I spent a lot of time identifying differences and imperfections. I really was very different and awkward and sticking out like a sore thumb. Nobody ever knew about my distress, no one knew about my struggle to fit. I don’t think I could have verbalised it even if anyone had asked me to try to share my feelings. But no one asked anyway. They simply singled me out for persecution every now and then or waggled a finger at me and wrongly accused me of carrying an attitude or behaviour I didn’t recognise in myself. I was obsessed with how people were reading me and how they seemed to be seeing something I wasn’t seeing. I continued to internalise my intense distress and suffered with stomach aches and patterns of fear. And I continued to be secretly furious with my parents for creating the situations that made me feel such a freak.

Maybe if I could pinpoint where my parents had gone wrong I could try to be more like other people and perhaps I would be fixed. Perhaps if I put on weight and grew my nails and tried to look more like other people it would help? When I got older I could get a car and pets and biological washing powder and the latest gadgets and go on holiday to Greece and vacuum a lot – maybe even vacuum a lot in Greece… I would be brave and cool (not too cool) and have a tumble drier and teabags. That might do it. And I could make sure my children didn’t have to suffer the same horrors as I did. At least they wouldn’t turn out like freaks. I had to find out which significant difference that was happening to me, nay: was imposed on me by others, was making me feel so wrong and not right and all faulty and not at all fitty-inny. It was worth changing my hair colour to see if that was the problem – so I did that a few times. Quite a few. For years. And years. And then I would regret that and go back to light brown.

I could observe normal people, throw off everything that might mark me out as different and I would become normal. Surely? And then and only then would people let me in and I would be happy because I would be just like everyone else and I would fit. All gloves and puzzle pieces.

Did it work?
Did it Betty Martin…

I was disappointed that shaking off all my childhood hangups hadn’t worked. I couldn’t identify such striking differences between me and other people anymore. But even the security people in the supermarkets knew I was up to something and followed me around. Maybe I needed smarter clothes? Or a confidant stride? I never stole a thing in my life. I was supremely honest! Why did they get me so wrong? What was it about me?

But I didn’t give up. I made lists and plans and projects and visualised me being normal and worked out how I could make that happen.

I had the odd hiccup. I had to bash my head on a wall a couple of times. I had to smash up the odd clock and the odd mobile phone, but I’m nothing if not optimistic and determined, and when I make up my mind I’m going to do something I am going to do it. I threw off the odd panic attack and sudden unexpected headaches and the weird desires to scream and hide in a tree, and followed the design for a good sociable woman I had created for myself based on observations and well-meaning advice. If I was superbly terrified about an evening out all I had to do was drink gin to shut my brain up and grin a lot. When you’re young and pretty that seems to work.

“Operation: Normal” was taking longer than expected though. Twenty years after leaving home it still hadn’t been achieved. But I wasn’t giving up. I’d managed to fake it quite a few times short-term and that was giving me hope.
Until, that is, my father died and I was exhausted by everything and fed up with life for not giving me back what I felt I deserved for all my effort. And people – people were supremely ungrateful when I knocked myself out for them! Couldn’t they see how bloody hard I was working for everyone and how it was killing me? Why did I still feel it was not enough?

I shrank away from life. I stayed home more. I spent a lot of time reaching into places I hadn’t reached into before: places that had nothing to do with trying to be normal or trying to fit or trying to be liked. I learnt to be more still and more thoughtful and I learnt to say “No.” I had been doing things I didn’t want to do for years – things I had hoped would make me more accepted, things that would stop people from singling me out as different, and I had failed. I began to stop caring. Well… caring quite so much. Everything that had been reliable and consistent in my life since childhood had crumbled and I had to build a new version of me. I didn’t have the energy to plan how that version of me would emerge so I cocooned and let the rebuild happen by instinct and natural progression, and waited until I was ready.

When she emerged she was cautious and hungry. She was older and wiser and rather life-weary but ready for new things. This new me wanted honesty and ached for a life free from lies and pretences. I knew now how short and painful life could be; how there was no point wasting time on silly pretences, on images and appearances. No, I didn’t yet know why I was still different and struggled so hard to fit but it was time to be honest about how I felt.

But I still felt guilty for not trying hard enough. I should have mastered normal just like everyone else had. Other people must be trying harder, right? They were all going around completely shattered, close to a breakdown and hiding it well perhaps.
Despite this guilt, I found that some of my calmest, most peaceful and most healthy periods were those when I stopped trying. I allowed myself to do things that gave me these feelings again. It felt wrong and abnormal to be enjoying solitude, to feel so lifted by hours alone writing, to get a buzz of sheer joy when a social engagement was cancelled, but I kept returning to that which made me feel safe and whole and alive and satisfied.

What a confusing place to be though. What was wrong with me? Didn’t I like people? Was I depressed? I didn’t feel depressed. And I’ve always been very interested in people and wanted to fix their pain and make everyone happy. How very strange that the very things we might use to describe an unhappy person were actually how I was happy, and the things that made other people happy made me thoroughly miserable and exhausted.

Being honest gradually began to help: I found out that other people don’t worry about stuff as much as I do. I found out that stuff I find really hard they find really easy. I found that when you start to open up, it’s like turning on a tap and stuff keeps coming out. You find yourself saying things you weren’t expecting to say and you didn’t know you felt. You find you had been hiding things even from yourself. (Well, maybe you hadn’t, but I had.) And maybe that was my biggest problem: the hiding. And the pretending.

Talking openly and honestly is like picking up a paintbrush and making a picture: things become more whole and real and far clearer. It can get a bit messy and you can see the wrong things until everything that’s emerging is out there. But the fuller the picture, the better you can see what the story is and the better you can understand. You’re less likely to judge, misunderstand or disapprove if you’re made to look at someone properly.

So I painted a picture of anxiety, of hard work striving for perfection, of social struggles, of unexplained illhealth, of a weird craving to hide and be alone – and finding immense pleasure – and not depression – from that, of a life of misunderstandings despite my best attempts to avoid them.

And the picture emerged as a person with Asperger’s Syndrome – and some pretty normal traits and feelings for a person with Asperger’s too.

I had found my normal.

It wasn’t the compost bins or the pets or the trains. It wasn’t a shortfall in my effort. It wasn’t depression or brown hair (it’s pretty grey now anyway). It was nothing I was doing wrong at all. All that was wrong was the pretending and the secrecy and the fear and the absence of place to call myself normal and be my normal.

It’s seven months now since my assessment and I still cry with joy and relief at the clearer picture of my own version of normal that has emerged. I wasn’t getting it wrong. It was just the way I was. I still struggle with people’s expectations of me but I know now that they are wrong and I’m clever enough to build up a picture of what I can expect from myself better than any of the people who don’t fit into my normal.

It’s helped me to think of myself as in a kind of minority. Someone recently described females with autism as “a minority within a minority” because we are so sparsely identified and understood. Sometimes we feel our differences more acutely than they can be observed and it is up to us to tell everyone else but it is up to everyone else to listen because when we are allowed to be our normal we are joyful.

These days our house smells of tea leaves and orange peel and I wash our clothes with non-biological detergent. I even hang washing in the dining room sometimes. My poor children. 😉

If you don’t know you have Aspergers/Autism you keep trying to identify what’s wrong/different and trying to put yourself right. It’s exhausting. Finding out what makes you feel like that helps you repair and move on. And it helps you deal with others’ expectations too. I wrote this to try to explain because there is so much untold pain in an autism head.



Light and Seeds

IMG_1451This afternoon we have to go and see our youngest daughter’s teacher for a parent-teacher mid-term meeting/review thing.

I’ve been a parent for nearly twenty years and had my children assessed and summed up, and I’ve listened to many different approaches and opinions about their educations and development, about their attitude and their effort over the years. It’s not been consistent and, like most parents, we’ve learnt from the experience and ended up making up our own minds about our children. We are grateful for any information, we appreciate any praise, we smile politely at any advice, and we take what we can from it and discard what we believe to be misplaced or misjudged. We can see how we are not all always seeing the same child when we talk about one of them. In the past I’ve heard a couple of adjectives applied to my children by teachers that have really surprised me and which I’ve known to be false.

 

But this is the first time I will go to a parent-teacher meeting knowing that I have Asperger’s and knowing that my child may well have inherited those particular genes. That knowledge throws a whole other very significant ingredient into the mix that is our child – and perhaps our other children.

 

My children will carry my autistic genes. Of that I am sure. Any or all of them or none of them may have their own version of autism. They may simply carry some genes. Without formal testing I may never be one hundred percent sure about any of them. For now, all I have is a big bag of new knowledge and my powers of observation, and one heck of a lot of information under my belt after an incredible amount of delving, reading and paying attention to the world of autism. So far our middle child (our son who is 17) doesn’t seem to have my anxiety or my fears, but both our daughters have shown signs of inheriting my anxiety and some of my sensory processing difficulties and they have all three thrown up some interesting questions about the ease with which they can be squeezed through the narrow tube that is conventional education. It’s too late for me to discuss our elder daughter’s education with anyone now that she is nearly 20 years old – all I can do there is let her know that she carries my genes and has a chance of possessing many of my traits (which are not all bad, I’d like to point out!) but it is not too late to consider what part (if any) autism might be playing in our nine-year-old’s education and childhood.

 

What I’m wrangling with today is just how far that considering goes, and with whom to consider it. Do I wait until a problem becomes too great, until some sort of crisis occurs? Do I keep quiet and hope she “gets away with it”, “pretends to be normal” and hope she learns to shrug things off? Do I assume her father’s non-autistic genes have watered down mine sufficiently for her to be pretty “normally-wired”? Will she muddle through until fifteen until suddenly one day a teacher calls her “difficult” or “impertinent” or another child bullies her and by which time it may be too late to discuss Asperger’s and she may hate me for trying to? I remember how I felt about being told I needed glasses at fifteen. I really don’t think I would have coped with being told I had Asperger’s at that age. I’m sure I would have rejected it and hated anyone who tried to discuss it.

 

From my experience, nine is about the age difficulties begin to trickle in for a high-functioning autistic/ Asperger’s child, and it might be when differences start to be less forgiven by other children and even by teachers. I also know that outsiders can often be quicker than a family to spot differences – after all we are used to our own children. It’s also about the age we notice differences in ourselves, and that can cause us to crave to fit in and therefore become quite secretive about our worries. Fitting in and not being noticed are extremely stressful and hard work and I worry about the long-term effects not just of that fitting in but also of the repeatedly being misunderstood. My gut instinct is that my child has enough of my traits for her to find certain areas of life a bit more of a struggle than other children and that this might become distressing in her teens but that she hides them well now and will never have serious enough problems for teachers to think to consider autism without knowing it is a possibility. I also feel that if it is going to be discussed, sooner is better.

 

So today I am planning to plant a seed. I intend to merely mention to our youngest daughter’s teacher that I have Asperger’s. I’m actually quite scared because I hate talking about myself.

I want, while our daughter is at a school small enough and far enough away from the stresses of more serious formal learning in the future, for her school to know about the genes that she comes from and be ready for any challenges or fears she may face. I can’t guarantee their knowledge of autism will be vast enough to know what they are looking for. I can’t guarantee it will mean as much to them as it does to me. I can’t guarantee they will use Asperger’s as a potential lens to view any troubles or concerns (if indeed there are any). And I can’t guarantee that I will ever get her a diagnosis if one is needed in the future. But a huge wave of meaning came over my life with my own explanations of my difficulties and it would be unfair of me to deny my children that opportunity. And not only my own children but the people who are in a position to provide support. Maybe they’ve already struggled to fathom my child and this will throw new light on their understanding of her.

 

You mean everyone doesn’t shrug?

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I was standing in the supermarket queue today with my husband and our 9-year-old daughter.
I’m a big fan of queues. It’s one of the things I like best about being British. Queuing is the right and fair thing to do and we usually do it well. A couple of weeks ago when I was standing at the fish counter being all polite and patient with my trolley, a late-middle-aged woman walked right in front of me and got herself served before me. I was furious. I’m still drafting a letter to my MP in my head demanding that all queue jumpers be deported regardless of age. Seriously though, if we suddenly stopped queuing I wouldn’t cope. It’s one of those social rules I get and follow easily.

But getting back to today: While we were waiting in the checkout queue, I thought about my new awareness of my difference. I had a good look at everyone around me and I’m pretty sure no one but me was standing with their shoulders all sort of squidged up, and a bit shruggy and self-protective with their arms pulled in stiffly by their sides. Everyone else’s shoulders seemed to be down and rounded with loose arms. Is this what it’s going to be like? I thought. Am I going to keep thinking about how I’m different from everyone around me now?
Already this morning I had thought about my overreaction to the empty almond butter jar: “WHAT AM I GOING TO PUT ON MY TOAST NOW?!?!”
That’s because I have Asperger’s?
Is it?
I don’t know.

I had also thought about how Mum always says how I cried to be left alone as a baby, and was the only one who just wanted to sleep, whereas my sisters cried for attention.
That’s because I have Asperger’s?
Is it?
I don’t know.

In the car on the way to the supermarket, I had to close my eyes and shut out one of the stimuli making an assault on my senses. The radio, our daughter’s incessant chatting, the movement of the vehicle, the bump of the gear changes: I felt exhausted.
That’s because I have Asperger’s?
Is it?
I don’t know.

Part of it is because I’m tired and emotional, I expect. I felt overwhelmed again last night. And so, so emotional. I’ve spent days looking up psychologists online, trying to find which ones are close enough to me, which ones are clinical psychologists, which ones do autism assessments in adults and not just children, and waiting to see which ones will answer my emails and questions. It’s time-consuming and confusing. But not as confusing as the chaos in my brain. I’m analysing everything, and thinking about the future and the past. I got into bed last night and cried my eyes out.
Who am I?

I don’t regret this, I don’t regret any of this. I decided earlier that a good metaphor would be the feeling you might get if you were about to get married, and a good friend revealed to you what a completely deceitful, cheating, dishonest tosspot your future spouse is. There would be initial pain and lots of rearranging of your past and your future in your head but eventually you know it would be the right thing to do, and you would be better off with a new plan.

A few people have asked me if I really need to get diagnosed. And the answer for me is Yes. I want someone who works with Asperger’s every day to look at me, listen to me and recognise me. If it stigmatises me, so be it. The best way to describe it right now is I feel like I have windows but I can’t see through them yet. They need cleaning to clarify what I’m dealing with.

After a walk on the beach with Richard and our 9-year-old I came home and did a bit more research. I filled in an austic spectrum questionnaire and got another high score on a website written by someone who works with people on the autistic spectrum. She writes:
My view of Asperger syndrome is that it is simply a different way of thinking and thought processing. Asperger syndrome only affects a small part of the brain and, similar to dyslexia, does not change personality.
More at: http://www.maxineaston.co.uk/what_is_aspergers/

I found it reassuring and self-validating in a way.

I’m still me. I always was.

But please don’t take all the almond butter!