MELTDOWN: “Greater Force” versus difficult 


“Meltdown” if you’re autistic is the culmination of too much coping, too much stress, too much internalising; too little opportunity for repair, too little understanding, too little time being true to one’s needs.

It’s a powerful rebellion of the inner self, of the true needs of the autistic person. It’s a reaction, a cry for help, an explosion. It’s a need for release from what’s going on now or what’s gone before. It’s an immense sensation that something must give, must break, must end. It can manifest as a strong – if not totally overpowering – need to escape. To rip a hole in this current life and run away.

There is often a sense of a Greater Force beyond our control creating havoc, making life especially difficult and of life conspiring against us.

It’s not a hissy fit. Please don’t say it is. It’s important.

What it really is is an inability to see soon enough that we’re asking too much of ourselves or that others are asking too much of us.

We might react to an immediate environmental or personal impact upon us. We might scream that life or a person is picking on us (it sure as hell feels exactly like that) but what it really is is too much expectation. Too much difficulty. Too much pain. Too much…

Like a belly so overfull it makes you vomit because there simply is no room for anymore, the only thing to do is let it all out or implode.

I see myself trying to carry too much – metaphorically and literally. I watch as I drop things, as I disappointment myself, as I hurt myself, as I become overwhelmed.
I feel a rising tide of everything pushing against me and I rarely remember to stop soon enough – or I am simply not permitted to stop soon enough.

There is no Greater Force conspiring against us.

It’s just too much. It’s too difficult.

But goodness only knows what the answer is.
Another world? Another time? Another set of rules?
Another way of thinking about difference and need?
Some kind of permission for better clarity from autistic people for autistic people and a language based on acceptance and empowerment that allows for difference to be accommodated and embraced is certainly needed; that allows for us to feel safe to say we want change, we want you to change and we want to cope on our own terms. And an end to this feeling that we were not made for this world or that we should try so very hard to not be ourselves when we and the world were very much made for each other.
It’s okay to say it’s too difficult. It’s okay to say your way is not my way. It’s okay to say I have to do a, b or c in order to survive.

But it’s not okay to be in a place of meltdown not knowing that all it was was too difficult, too unsuitable, and we should have been

allowed

to

Stop.






One Thing Only

I went for physiotherapy this morning. The outcome was good (well, better than expected). The physiotherapist is lovely, and I know her well enough to not be too daunted by the mysteries of what to expect. My husband drove me and picked me up and the journey was only 10 minutes. Yet I am exhausted. It took over the whole of today and I’m still replaying and relaying the experience. I worried about it overnight, worried about what I would say, what I would wear, about someone else seeing and touching my body. I am exhausted from socialising and from talking about myself – I find it really hard to take up people’s time and for the time to just be about me. I struggled to get back to normal and complete the rest of the day, to cope with work and parenting and this evening’s mealtime. I just wanted to go to bed at midday and say ‘I’ve dealt with something today!’ And yet to anyone else this is just an appointment amongst many in their diary – get over it. But every other conversation and decision for the whole of the rest of today has been an immense strain and had me close to shutting down. I even said to my husband ‘I’m not sure I can talk to anyone else today.’ 

This is me. One thing dominates and continues to dominate until it is over and I have recovered.  Good or bad. I do my best to keep going but the need to recharge is not a choice. It is a need. It’s how it is. 

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.

How to Live a Life

I have been struck by crushing and excruciating exhaustion. Completely floored. I felt it coming and fought it. I shouldn’t have. Now I have to consider each move, each step, each job and each rest. I have to allow myself to surrender. 

Plans? No. None of them. Cancel everything. 

I’m never completely sure what’s going on in my body but sometimes it says “enough” and “no”, and it’s always after trying to act like a regular person, after anxiety, after peopling, after a run of events that other people would find normal but that I find consuming and often scary – or at least worrying – and that use up so much of my thinking. My life, my energy, my brain, my thought process are all geared towards what is expected of me next and I drown in a combination of planning, organising, imagining, visualising, fearing. Downtime, breaks are futile because What is Happening Next is looming on the horizon. Rest can only come when there are gaps. 

Right now I need a big gap. I need quiet, space, peace, open spaces, periods of silence, freedom to move instinctively, a break from expectations, from my own standards. I need to feel security from intrusion. And that includes unexpected noises or things breaking into my safe space.

January is a particularly difficult time after pushing myself repeatedly to be all things to everyone when I’m a person who needs long and regular periods of still and quiet and lost-in-my-head-ness. 

I know who I am and it is not this person. 

Who I am has been pushed to the side, smothered, hidden under a huge pile of “Being Normal”* 

Every wadge of “Being Normal” that is piled on top of all the others I haven’t managed to escape from yet crushes me a little more until I find I am shouting for help. Wanting escape. 

In bed, I am dreaming of intrusion, fear, expectation, of eyelids unable to open, of calling for help, of feeling trapped. 

It’s not that this world was not meant for me or me for it, it’s just that variations are so difficult to live by when they are so poorly absorbed by the latest ideals of how to live a life and my own how to live a life doesn’t suit those who rely on me. 

How much of this is anxiety? How much of this is from years of trying to fit and fighting my real self? How much of this is autism spectrum? How much of this is middle age? How much of this is a commonly-felt dose of post-Christmas, midwinter, light-deficiency tiredness? How much of this is sadness and frustration that I’m still not living the mellow, creative life I’ve always dreamed of? How much of this is ridiculous perfectionism and unattainable high standards? 
All of the above. 
There is a pill. It’s called accepting variations from the norm and absorbing them into society. 

*I use the word “normal” to suggest I and others like me are not normal. But I use it tongue in cheek. We are all human. We are not freaks of nature. Neurodiversity is about the variations within the human and is normal. 

The Eco Whisperer

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I want to be an eco-warrior and stand a-top a mound
Wave leaves and flowers like flags for the earth
And call to all around:

“Don’t kill the animals! Don’t poison the plants!
“Don’t burn trees to the ground!”
“Leave beauty where you see it.”
“Don’t covet all you’ve found.”

I want to fight for truth and hope
Teach sharing, caring ways
And show each human how wanting less will bring us better days

Let’s look past borders, let’s empower the poor
Let’s end this greedy phase
Give hope to future people
And the children that they raise

I want to change the way we teach: setting children on course for greed
Drive minds instead to long term plans
With warnings they must heed:

Give up your ego, give up your bling
Give time to thought and deed
See wealth for what it really is:
Taking more than you need.

For it is our greed that got us here:
Our desire to own and win.
Our minds must change from envy and respect
To avoiding this huge sin.

Quiet, committed thinkers
Are the role models for me
No Bransons, Trumps or Windsors
May ever come for tea

Admire the ones we’ve never heard of
Who never took a dime
Who ask for nothing in return
Though they’ve given so much time.

I’ll never be that warrior
Up high for all to see
I fear for the attention
And the conflict aimed at me
But I will heed my own message
And write for solidarity:

Power to the future
The animals
And the sea
Destroying nature is not progress
And growth?
That’s for the trees.

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. 

A Project, Not a Day 

“I love you. I haven’t written your card yet and I haven’t bought you a present but I do love you,” I said as he left my vitamins next to my cups of tea and walked away. I need 3 cups of tea and magnesium and vitamin B supplements to get me out of bed these days.
“Good,” he answered with much weight for only one word, and closed the door behind him. He’s unwell today and we’re not planning any conventional celebration. I have painted my nails though and am working out how to cook a special meal with no oven.

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2016’s Anniversary flowers

22 years ago today: exhausted, nauseous and anxious, carrying a modest cream roses and freesia bouquet, and wearing a sale dress, I took his name and we committed to one another. I didn’t need to take his name – I had my own name but I wanted ours to be the same name and to have a family all sharing this name. In the years since I’ve thought about all the women’s own names that have been cast aside for marriage and how my own surname was not my mother’s or grandmother’s or great-grandmother’s. But their names all came from men too, and it seems to be one of the last remaining vestiges of patriarchy. Besides you’d have to go a significantly long way back in history to find a name that didn’t come from a man, and that wasn’t a topic up for discussion when I was 24 and in love.

The beginnings of tiny baby Gemma were growing inside me and I wanted us to all share a name by the time she was born. So 22 years ago I went along with tradition without question. (And being pregnant before marriage was part of my family’s tradition!)

Our relationship was over 5 years old by then, we’d lived together for nearly 3 years and we’d been engaged for 2 of those but we’d never planned a wedding. We both found it daunting for our own reasons.
In the end it was a small, inexpensive registry office wedding with no time to do anything lavish and not enough time to overthink or over-plan as I am prone to do. I’m still glad we did it that way and, knowing myself a lot better these days, I’m quite sure it was the right thing to do.
On our anniversary each year I think only very briefly of the day – it served a purpose and an important one to me but I think mostly about the years, the numbers, the clocking up of shared experiences. I think about what’s changed through our commitment and through time, about what’s been gained and who has been lost. Somewhere there is a group photo of our wedding day. It’s stuck in a box. (We didn’t have a photographer but our tiny group of family and friends brought their own cameras – and they were a talented, artistic bunch!). But I like our relationship today so much better than the one we had then and I’d rather live in the present.

It may seem an awful thing to say but I wanted to get the wedding out of the way. I just wanted to be married and get on with being married. By the evening I was not enjoying myself at all, was completely knackered and had run out of the ability to make conversation. Big events and big, long days are not for me.

But the big, long years are for me. The learning, the shared mistakes, the getting things right through error, argument and experience, the way a relationship balances over time. Boy, we’ve made some awful cock-ups – and we will continue to make new ones but I do believe we’re getting more right than we are wrong and for me this means that being older and deep in a love is a lot more comfortable than being young and in love. I am never certain of anyone’s feelings for me. I am forever afraid of losing people and often won’t work at friendships for fear of failure or rejection. But this has been one relationship I was prepared to risk all for and really work at it. We have both perfected The Right Royal Pain in the Arse, and have a most nasty, mean, thoughtless side which we save only for each other.

Result.

I didn’t expect much from our wedding day, I certainly don’t expect much from today. What I have is a certainty that through joy and pain and suffering and general life shit, I have loved someone for 27 years and somehow he has committed to me for 22 years and shown me that he loves me back and my own commitment has been repaid. So I love anniversaries and I love that we both survived another year. Each passing year that slowly becomes less and less certain through age and ill health becomes more of a celebration. I never took any of this for granted and I never will.

Throwing your whole being into one relationship isn’t for everyone but it is for me.
And commemorating the overlooked numbers like 22, and not just the rounded ones, is important too.
I am a project girl. And project family and project relationship have been two of my absolute favourites.

Happy 22nd Anniversary to me and him. And thank you, Richard, for yet another beautiful bouquet of flowers.

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.  

Anxiety: It’s not me; it’s you. Sorry. 

When my anxiety is getting the better of me I feel I need to say everything, put it all into words, make my own sense of it and be heard. 

Every part of this need for openness is problematic:

1. My anxiety involves other people and their actions so to talk about what is upsetting me is to criticise others – or risk making them feel they are being criticised. This results in others being defensive or hurt and my anxiety escalating. And people mistake silence for rudeness so I can’t ever get this right. 

2. People want to give me answers and solutions or explain what is going on and what is real and what is not real. This makes me more anxious and insults my intelligence. I know what is real. And I know about anxiety. I am an expert. 

3. People tell me not to worry. There are not enough hours in the day to explain why this is ridiculous but a comment like this will make me unlikely to share my fears with a person and instead make me feel ill. (Or if you’ve caught me at a particularly bad moment may result in colourful language.)

Most of what makes me feel anxious can’t be stopped. Some of it can be avoided to a point, and my self-awareness and ability to assess things enables me to judge what I feel able to put myself through at different times and in different situations.

4. People offer fixes. When you have lived with anxiety all your life and have been through what I have been through – you have researched, experimented and grown wiser – you become weary of “fixes” and weary of trying. You come full circle and your knowledge is deep.
‘I have found what works for me and what doesn’t, but thank you anyway’ doesn’t cut it for some because here I am still complaining about anxiety. Clearly this indicates to some I haven’t found what works and they feel a need to help. Really: thanks but no thanks. 

The truth is I don’t want to complain about MY anxiety, MY “problem”. I really want to complain about the world around me because I have found what gives me peace but I’m not always allowed it. Instead I must internalise the feelings and do the anxious thing. 

Currently I don’t know if and when our back garden will go back to being peaceful ever again and that is causing me to worry and to pace. The uncertainty and unpredictability of other people has always been distressing for me, and the responses required from me are exhausting – as too is the “put up or shut up” it often seems is required by everyone. I find the best way to heal and recharge is total withdrawal, and being able to escape from man-made noise is important for me. If and when I get that, I feel lost in a delicious calm. It’s my self-prescribed medicine, it’s what works.  

Several times every day, I swallow a rant that is playing on my lips, I hold back an opinion that might result in an argument I don’t have the energy for, I decide again and again and again that I can’t put my needs above others’, that I can’t voice my concerns, that I must disguise my discomfort. This in part is to do with being a woman, a mother, an adult, a responsible member of society. It’s about caring about others but it is also connected to my anxiety, and for me it is pretty constant and I wish I could retreat to my ‘what works for me’ more often to avoid this anxiety. Instead, though, I must keep on, knowing how things should be and knowing I can’t change them – and occasionally allowing myself to blurt out how anxious that makes me feel. I should be allowed that at least, surely?