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.

Red, White and No

I will not judge you if you do not wear a poppy. 
I will not judge you if you do wear a poppy. 

I will not judge you if you wear a red poppy. 

I will not judge you if you wear a white poppy. 

I will not judge you if you wear your poppy with pride. 

I will not judge you if you share your reasons for not wearing one. 

I will be sad for systems that force the wearing of a poppy. 

I will feel sad for those who fear the outcome of their choices. 

I will be disappointed with those who feel they have the right to express anger at others’ choices. 

I will remember that all death in war is tragic, futile and calamitous. 

I will remember those forced to give their lives: certainly, bravely, reluctantly, screaming for home, running in terror. 

I will remember lives blasted away, families ripped apart, generations lost. Mental and bodily health ruined. 

And I will hear the echo of those determined, traumatised souls of the past warning: “Never again. Never again.”   

We must surely remember but we surely must not judge. 

For surely when we judge; when we make no attempt to understand, we sit in different camps like enemies and do battle.

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.

Important: Autism and empathy 

I wrote this in a private group but it struck me that the whole world needs to hear this: Being shocking at thinking deeply about how others might feel and not being able to look at things from others’ perspectives is not about autism, it’s called being a psychopath and it’s a human trait that exists throughout all neurotypes. Autistic people are usually highly sensitive people (as are some non autistics) and we often can’t handle how much we *are* good at this imagining how stuff feels for others, and how we need extra time to process this. Or we may even put things on hold until we have enough space to deal with them. 

I believe an autistic person *can* be a psychopath just as an non autistic can be but a lack of empathy is not a sign that someone is autistic just as empathy is not a sign that someone is not. 

If someone is not reacting outwardly the way you would expect them to think more about how timing is different in our brains and language is tied up in all this and we may want to use exactly the right words and not just plump for commonly used ones. 

Once the world stops thinking of autistics as cold, aloof and unresponsive we can begin to heal the pain caused by years of misunderstanding and this in turn will help us to feel less broken and unloved because we are incredibly tough on ourselves and the discourse around autism is often derogatory among us too as we turn in on ourselves with negative thoughts. I see amazing, sensitive autistic women deprecating themselves on a daily basis and they shouldn’t. They are wonderful

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! 😀