Autistic Woman and the Public Persona

I’m out, I’m dressed, I’m bright, I’m smiley. Eyes twinkling with mascara and positivity.

I’m active and alert, acknowledging, nodding, talking. I am efficient. I am cloaked in my efficient persona. I have rehearsed this. I will smile and I will be genuine because I am set up for this.

I’m not fake. This is me. I am real. It is not a mask or an act – but it is an effort and it is only part of me.

The other parts of me are quiet and thoughtful and closed off:

The watchful me, the imaginative me, the creative me; the me that likes to plan and plot and design and reorder and construct and renew and appreciate. The me that needs space away from others to think straight and to survive.

The recovering me, the aching, sore-bellied, groggy me; the me that pushed to make life easier for others and drove herself on adrenaline and internal pep talks and constant alertness to get things right. The me that gets ill because society doesn’t run itself for me. The me that pops beta-blockers in the night to try to cope with all the replay and self-deprecation and the panic about what’s to come and what went before.

The live-wire me, the musical, singing dancing, gardening me; the me who forgets the time, gets lost in thrills and who has a unique surge of productivity that sits so badly with the conventional work day. The me who loves what her imagination and inspiration comes up with.

I am so much that is not bad but that grates painfully up against the social order and that has its own clock.

I will fit. I do fit. I make myself fit.

And then I hide, I curl up, I crawl, I don’t speak. I think and I think and I think.

And then I lengthen and strengthen and stretch towards a life I know I can only take in bites. And boy do I bite it.

And that’s how the public persona survives. Like a symphony of contrasting movements and dynamics and all the rests in between.

Love the autistic woman’s public persona for she has worked hard to perform it for you. But love the whole of her, love the composition and the composer, the way the magic works and the how the best movements are the ones you don’t notice on the first performance.

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.

All Change 

I’m picking up her last-day-of-the-summer-holiday clothes from the bathroom floor. Greyed with fun and carelessly crumpled. Today she is wearing her brand new crumple-free uniform for the start of a new term at a new school. From oldest in a primary school to youngest in a secondary school. The stress and expense of the new uniform has plagued our lives for weeks. 

The anxiety and excitement of so much change kept her awake most of the night. Fuelled by adrenalin, her eyes shone as she said goodbye to me, keen to leave, to see her friends and share this first day with those who would understand. We, after all are not going though this as she is…. Little does she know…  I am sad and nervous and proud. This morning she had to get up and be out of the house a good 3-4 hours earlier than she’s been stirring on holiday days. Throughout this coming week there will be belly ache and a sore throat and we, her parents, will suffer the brunt of her tiredness in her efforts to cope. 

I am grateful for mobile phones and social media and all the messages passed between jittery friends in the last couple of days: “Are you wearing short or long sleeves?” “Are you getting a locker?” “Do we need our PE kit?” “Are you wearing socks or tights?” And last night: “I can’t sleep either. I’m too nervous.” This morning a phone call from someone keen to have a companion to catch the bus with. A huge thing to have to travel to school by bus for the first time after years of a five-minute walk. 

There is no doubt secondary school will change her. In what ways I can only guess for now. There is no guarantee she will be happy or unscathed, there is no certainty of anything other than this knowledge that change starts in a big way today and she will have to change to cope, and I’m not sure I’m ready for it. 

Regular but Fizzier with Extra Lemons

Always the juxtaposition of being human and feeling regular human feelings along with atypical reactions to some aspects of life is uncomfortable to accommodate when I need to talk about feelings and about coping. 

Autism is still discussed as a fault; certain things are lacking – apparently… But I’m not lacking. I’ve got everything I need to be a fully-functioning human being. 

I’m not broken. I’m not wrong. I’m not so very different but I do have different needs. I am always truly heartbroken if I pick up any hint whatsoever that I may not be perceived as completely capable, trustworthy or approachable. 

True, some things trigger problematic feelings, some things take extra energy. Some things cause ill health or anxiety. Some spaces, time-scales or expectations are too tight. The choices for how to behave and when and where are too limited for me. That doesn’t make me lacking; that makes society lacking.

I am safe, I am competent, I know how to put my children first. I know what’s important, what’s fair and how to accommodate my needs around those things. I trust my instincts and I inform myself to back those up. I doubt myself hugely on a minute-by-minute basis and make sure I am getting things better as I go along. The combination of autism and others’ perceptions of what autism might cause me to fail at means I am super-vigilant. I don’t want anyone using this against me. 

I feel perhaps in the same way that our nerve endings are right at the end of our finger tips and everything we touch gives us information, that all my experiences and my emotions are on the surface too; out there, on my skin. My joy, my pain, all my senses, the heat, the cold, the tightness of a space, the pace of life, the expectations of that’s-just-how-it-is, it’s all fizzing with messages going to and from my brain with immediacy and honesty. I’m not packing away mini reactions and mini experiences throughout the day, I’m indulging in great big panoramic gasps of life all the time. Everything is fingertips on a pinhead or sandpaper or silk or kitten’s fur or ice or a burning stove. It’s a series of wonderful and not so wonderful sensations asking for my reaction. 

And yet I must often swallow those great gulps of daily life experience, I mute the “Ouch!”s and the “Slow down!”s, the “OOOH!”s and the “Aah”s and I internalise them. I sit politely pretending to listen to someone talk, all the while wondering what the hell is going off in my peripheral vision, and then I am left with huge great big full stops. I haven’t reacted enough. I haven’t dealt with all this. I lie awake at night, overstimulated, processing everything. 

I am very fizzy. I’m bubbling all the time. The way society runs itself is really rather like someone adding a spoon to an already effervescent world and stirring fast. So I regularly and sensibly give myself a break from that great big stiry thing.

I don’t see it as a bad way to be, I certainly do not see myself as abnormal. I’m human just like everyone else. I’m just extremely  human. 

And because I’m extremely human I am extremely honest. Ironically, despite the superhero clamping down on myself I do, I actually have a greater need to react with immediacy to everything going on. I want to vocalise each emotion as each experience plays out. I want to dance, to sing, to shout, I want to echo sounds that move me, I want to enthuse like an emotive wine-taster: “I’m getting lemon zest beside an ocean!” It’s all so zingy. 

The written word makes me feel safe. My counsellor is a querty keyboard; patiently waiting for me to form the words, to tell her how I feel. So I write it. I write moments of joy, flashes of anger, hours of pain, I spill, I edit, I too hear what I say and feel purged. This honesty, this purging, this sharing shows a side of me hidden from daily life in the physical world. I know how it looks to write pain on a page. I know how it can diminish you in the eyes of some. But it’s just honesty. And it feels better for saying it, making sense of it, it feels good to be honest, to pssshhhhh out a little of the carbon dioxide that makes me fizz. Life is all about feeling and sharing. 

I’m not entirely sure where I was going with this but I feel better for saying it! 😀

My Happiness is Not My Own

I’m touching the edges of today’s latest horrors in my mind. My pulse skitters and I choose to distract myself; to float a little away from it perhaps. Acknowledge but not absorb. No photos yet for me, no TV news. Not yet. 

It’s always there that the world is peppered with horrors. I know I will take some time at some point today to imagine a celebration gone wrong, see a truck advancing, hear screams of horror and desperation but I try to keep a little away from it for now just to function. 
On top of so much sadness already, on top of so much disappointment in other humans: another layer of pain. And the reasons, the consequences. What good are we if we don’t think about those and try to change things, try to change ourselves?

I’m still blinking away photos of animal cruelty I came across against my will yesterday. Shared thoughtlessly. My body and mind sank into the suffering. My chest ached. I can’t un-see, un-feel. 

I took as much as I could bear of our political chaos yesterday and allowed some time to ponder consequences for those who will suffer the most and for the future of our world. I’m so sad for the narrow, short-term way so many minds work. For so much to go unchecked, unchallenged. I’m so hurt and horrified by nastiness dressed up as necessary. 

I can’t detach myself from any of this. I am part of this, part of all of this. Everything is connected. Everyone is connected. 

I can look away. I can distract myself. I can think I have removed myself. I can know what I don’t trust, what I don’t believe. I can know what is good for me me me me ME!!! But deep down I know that what is for the greater good, what serves the most people- what gives the widest health and security is good for me. 

My happiness is not me. My happiness is my world.

So I’m here. In it. Waiting for it to hurt. Again. Because helpless feels a little bit better than detached. Feeling feels awful but not feeling isn’t an option. Wishing it really was so simple as a time for everything but knowing some people never ever get to dance.  

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…?

Intent

Recently I’ve been thinking a lot about something but I wasn’t sure what it was I was thinking about. That’s not an uncommon situation for me and I wanted a word for this something. For a couple of months I’ve been laden with emotion and a desperate need to lay out the causes and put them into something made of words. 

I thought about “unkind”, “thoughtless”, “insensitive”, then wandered down to the concepts of judgementalism, misunderstanding, friendship, betrayal, power. I’ve tried to unpick that old friend “empathy” and had a good wallow in the ins and outs of “compassion”. I’ve come back to the word “misunderstanding” again and again and again but it just wasn’t enough. Sure a misunderstanding can hurt deeply but when you know something is the result of a misunderstanding surely you can eventually pick up the pieces and begin to heal? Forgive and forget, even? Move on? If only… 

Now I’ll try to explain myself a little. 

Before I discovered social media (outside of my educational forums, that is), I hadn’t fallen out with another person for well over twenty years. And even the falling out I can remember from over 20 years ago was completely one-sided – I wasn’t interested in any kind of spat or animosity. I don’t like bad feeling and I go out of my way to avoid it. But not just that: I genuinely believe that despite all my faults (and there are many and I admit to them repeatedly) I am actually a nice person who likes people. And I really don’t want to fall out with people, ever. It hurts too much for too long, and I seem incapable of stopping caring. 

But about a year or so into discovering Twitter and Facebook (2009-2010) I fell out with someone I thought I had become good friends with. After many months of replaying the circumstances in my head, I came to the conclusion that we were in fact incompatible and if we hadn’t fallen out that day, it would have happened one day, and the good old-fashioned trick of avoiding someone socially until the connection fades naturally isn’t so easy in online acquaintances – you actually have to turn off the friendship. It’s that harsh. We hadn’t known each other long and I had misjudged the friendship. But I had learnt a lot from the experience and wouldn’t let it happen again.

But then a couple of years ago, it did happen again. I’m not going to discuss the details publicly but I knew immediately that it was over. I can’t express quite how painful it felt to know I had failed. And I do feel I have failed, still. I had been completely misunderstood and I didn’t have the energy to put it right. I felt it would have been futile and distressing so I walked away, at speed. It hasn’t gone away though. It will never go away but, boy, had I learnt a lot. 

More recently I haven’t handled too well the way words have made me feel and I have flared up at occasional mix-ups but I have learned to look out for something and that is the something I couldn’t put into words. I’m looking for this something from both sides. I have ceased contact with one or two people – without a fight – and decided to avoid people who make me feel anxious. This a new and very grown-up side to my online socialising: self-preservation without a battle. You don’t need to be defensive; you can simply turn away. 

But my heart is still hurt and aching from every detachment, and I still feel fondness for all involved. If I care about you, I care about you. That doesn’t change. So this is why a very recent detachment is causing me so much angst, and although it’s been a few months now I am searching for that explanation; that description; that word to help me find out why it went wrong. 

And today I found that word: 

Intent.

And I have my good, strong, enduring, on and offline friendships to thank for this realisation. You see what I’ve noticed is that people who know me and care about me will not assume any ill intent in my words and actions they don’t believe me capable of. People who assume an intent which wasn’t there and you are not capable of, are judging you and don’t know you. And that assumption of intent is more about them than about you. 

Realising this simple concept of intent is crucial in any two-way relationships. It’s about trust: trusting in someone’s goodness; it’s about not judging: not seeing bad where it doesn’t exist, and it’s about holding back your own insecurities: don’t implant your bad experiences into someone who didn’t create them or blame them for your anger. 

I’m very very very grateful to a number of people who naturally live by those rules and have never assumed any ill intent on my behalf; who trust my heart, and keep my faith in friendships well and truly alive through times when I might have otherwise wondered if I would be better off in solitude. If you think it might be you, it probably is. 

I’m experiencing a real sense of “I won’t lose any more of you” recently, and now all I can give are my own good intentions. 

Rivers, chasms, rocks and balls

shutterstock_152045750There are many days when I feel life is a combat; a clash: it’s about all problematic differences and inexorable imperfections. I don’t go looking for them – they go looking for me. These differences come and get me, bash into my safe world and make it unsafe. I don’t want it but there’s an adversarial edge about me. What I actually want and what I feel I am really looking for are similarities and sameness for comfort. But on days like these there’s a sense that my difference and my way of looking at life is a chasm, a great, hulking, massive mile-wide fissure between me and everyone else. I’m desperate and separate, and longing for the most familiar and recognisable people and beliefs so that I may latch onto something secure. I feel a need to be fully understood and yet I am aware that that is not possible, and it’s so tremendously heartbreakingly painful. People I know let me down by not being exactly as I need them to be and not saying exactly what matches my thinking. I need them to fit – and of course they can’t (and why should they?).

When I look back on days where I’ve felt this way, the me from the outside – the me who has made it through and has shrunk the chasm, feels so protective of the me who was crying for help and clambering over rocks on the other side. I want to tell that me how well she’s doing, how she must hang on, and how of course the fight is as big as it seems but that fight is not necessarily always with other people – it is with the chasm. I wish I could reach out and help her up and over and out of her distress.

But there’s a sense on days like those that rejecting people would be easier. Just let go of everyone and fall/fly/run – depending on my mood, and be free of contention. People are contrary, oppositional, and cause conflict. I don’t want the conflict of contradiction or unexpected words. It makes me feel unsafe. I want to be offered a hand, but would I take it? Would I trust it?

This is autism. This is how the part of autism that cannot cope with change, unfamiliarity and difference manifests in me. It’s not about prejudice or discrimination in the way a person with racism or hatred would see difference. It’s more about familiar thinking and familiar behaviours, similar likes and dislikes, similar needs and similar struggles. And it’s about feeling that people are doing and saying unnecessary things and adding to my distress. People simply seem more cruel and less warm. My ingenuous detector becomes highly discerning and there is very little I am able to trust. It’s similar to childlike intense distress at not being fully understood and knowing the adult brain can’t see what you are seeing. But it’s a grown-up, dark distress that can only deepen with the realisation that outsiders are unable to validate or comprehend your distress. I can feel as different from other white, forty-something western women with homes and children as it is possible to feel if they are not looking at the world in a similar way to me. And while I’m being so apparently oh so the same as everyone else the river of difference keeps flowing, wide and fast and keeping me separate.

Then when the time has passed and the difference waters are calm, I am calmer too. I feel guilty and am quite awkward about being so at odds with so much of the world. I see how I was irreconcilable and possibly inconsolable. I want to love and be loved and mend fences. I am filled with intense amicability. And yet I am full of fear for when it will happen again and doubts about who will hang on through another earthquake.

What I am trying to fathom out now I am over the latest chasm is whether these chasm days are necessary? Whether, like autism meltdowns, they are an obligatory release and rest from social play? Does all the fitting and understanding and placating take its toll on the autistic brain so much so that we need compulsory rejection days? Is modern life insisting that we continue to socialise, and function on a constantly communicative level when really what we need is to retreat? Is my brain marking out all these differences as oversized predicaments to get me to withdraw?

If there’s one thing I’ve learnt in the past few months it’s that I must withdraw and I mustn’t fight that need to get lost in the wilderness. Other people’s everyday social behaviour is like a tennis match to me. I have to remember to get out at intervals and stop letting the balls hit my head because it ruins it for them and it hurts me.
It’s a lonely place over the chasm, and the urge to curl up and weep is huge but as the world becomes noisier and less and less private the opportunities to do just that become fewer, and rather than wish I didn’t have to go there I fear for the times when I – and those like me may find we can’t escape for our solitary climb in our mind or in our own backyard.

Today the differences are not looking for me and I am not stumbling over rocks. I am not caught in a tennis match. I feel my heart is huge and the chasm is small. I am appreciating a view from my always slightly different angle on the world. I am not looking for people to only say things that make me feel safe, but I think I appreciate this feeling all the more for knowing so well what it’s like to be ripping my nails out trying to hang on.

I think autistic people want and need their right to position themselves where they want in the world, to look on the world with a knowledge of difference and to have that view validated, but we also need the offer of a hand up when we think we are slipping.



Today’s thought…

shutterstock_170125076I’ve been thinking about this obsession with looking younger. I just had a spam email advertising looking 10 years younger in 10 minutes. I don’t actually want to look any younger. I like being a grown up. I don’t want to walk around with my husband looking like he’s my father. I am proud to have kids in their late teens and to look like I’m old enough to be their mother.
I have no desire to look like an expressionless, startled, immature, unexperienced child or object. I like looking experienced, less threatening, and I like how other women chat to me when I’m shopping. That never used to happen when I was younger. I like how my sexuality has developed, settled and become a part of who I am instead of a feature.

Yes, it’s nice to look and feel healthy whenever possible but I certainly don’t want to go back in time. There’s a reason why I look like I’m over forty – and that’s because I am. It fits.



Impressed? Not much

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I’d love to live in a world where humble, modest and generous-hearted were held in the highest regard, respected the most, and seen as the best properties to strive to attain and achieve.

Yet I believe we live in a world where quite the opposite is true – and people who want, take and show off are given unhealthy and ugly undue respect for being selfish, power-hungry and greedy; where somehow it is okay to steal as much as one wants regardless of the unfairness, decide to throw back a little where one chooses to celebrity-studded charities that shouldn’t even exist – and this is weirdly better and more applauded than never stealing at all.

Every day I feel guilty for the imbalance and inequality in my life compared with others. I see admiration for cars and houses and businesses that are bigger and more damaging than necessary or fair, and I wonder why we should be so impressed, and how on earth we could believe that anyone, anywhere deserves more – especially when it is based on want not need?