Autism and Empathy for Dummies

If you read anything in the media about Theresa May being autistic because of her lack of empathy, know that it offends all autistic people. I can’t think of many women more unlike me. 
The empathy thing is wrong, was always wrong and we’re sick of it. 

Being an unimaginative, privileged twat with a serious deficit in the guilt department is nothing to do with autism. 

Refusing to be accountable for your actions because your self-preservation instinct is stronger than your caring one is nothing to do with autism. 

Refusing to answer questions because you know the truth but are intent on concealing it is nothing to do with autism. 

I watched David Lammy on C4 news last night and wanted to crawl into my TV and hug him. I spend my life thinking about other people and imagining how things are for them. It is who I am. My empathy consumes me. It keeps me awake at night. I know I am privileged and I know I don’t suffer like many others do but it doesn’t stop me thinking about it and knowing it’s not fair and wanting things to be better. I spend my life doing things that are uncomfortable for me because I know most other people are not autistic and do not want what I want. There are few more empathetic than autistic people living to keep non autistics happy. 
I am warm and soft and weepy and kind. I walk a quiet life of bare feet and kindness. 

So fuck off with your Theresa May theories and give us a break. 

The Hobo* Versus the Expensive Shoes

The best of anything comes about through gentle, tolerant delegation, not through dictatorship. 

Good leaders lead others to be their best, to do their best, and like a good parent, a good teacher and a good human, they see themselves as useful and part of something whole – not above it. Their own image takes a back seat as they allow others to shine and concentrate on what is truly important and dismiss what is not. Good leaders work harder but take a lower profile than dictators. 
Looking forward, giving hope, sharing optimism, highlighting strengths. Never seeing the most awful things in life as inevitable but seeing them instead as fixable, as solvable or something that must be tended to. 

Dictators’ speeches are not discussions with us. We are passive subjects. They shoot words like arrows to our emotions but leave us powerless and uninvolved. 

The speeches of good leaders involve us, let us think, bring us into the solution. They give us respect for ourselves and encourage us to see our own strengths and autonomy. 

I have believed in Jeremy Corbyn since Day 1 of his first leadership election. I listened to his words and they always made sense to me. I never saw scruffy or weak or “too nice”. There is no such thing as too nice. 
There is, however, a big thing called “Not nice enough”. It doesn’t always come in the form of expensive shoes and sharp clothes and empty rhetoric. But this time it did. 

We are beginning to see substance over front, I hope. 

*Hobo is a word used by someone to describe Jeremy Corbyn in a social media discussion started by one of my friends recently. Some of us were taken aback and more than a little disturbed and disappointed by the importance placed by some on appearances and clothing. 

The Sadness of Theresa May 

I bet Theresa May has never had an orgasm. I bet she’s never had noisy sex, screamed with laughter, wailed and shook with horror at the loss of a loved one. I bet she’s never told a dirty joke or puked somewhere embarrassing. I bet she’s never hated anyone so hard it made her ill. I bet she’s never loved anyone so hard her stomach flipped and she couldn’t eat or sleep for days, and tortured herself for being a fool.

 I bet she’s never watched a homeless man arrange his dog’s blanket and water bowl before he considered his own comfort and hurt so hard for him she wanted to change the world for him (and his dog). 

I bet she’s never known what it’s like to live in a moment and want to freeze a slice of life and show everyone how simplicity is better than fancy shoes or status or a large bank balance. I bet she doesn’t know how it feels to be loved so much that it doesn’t matter if you have no worldly goods or a big house – or any house, a big job – or any job, a grand education – or any education. Just loved. 

I bet she doesn’t know what it’s like to sit and make sense of the world with people who have no formal education but have felt great things, thought great things and done great deeds and are more than happy to one day slip away from this world without a splash because being good and kind and nice is better than any of the shoes she has. 

I bet she doesn’t know that no one is jealous of her. I bet she thinks her ambitions are everyone’s ambitions and she has somehow reached her climax. 

If she could I would tell her to think again. But I don’t think she could. I don’t think she can be that free. 

It’s incurable I fear. 

I Am Autism

I am all your fears multiplied 

I am all your senses intensified 

I am all your blinding lights in agonising magnification 

I am all your irritations quadrupled 
I am all your needs made life or death 
I am all your demons emboldened 

I am all your plans unstuck
I am all your sleep disturbed
I am all your time stolen 

I am a constant storm 
I am too much wind, too much rain
I am too cold, too hot, too buffeted  

I am “look at this”, “look at that”, eye for detail, nose for detail, “food’s gone bad” 

I am your calm denied
I am honesty at all costs
I am fairness at all times 

I am all your conversations distracted 
I am your tiredest morning every morning
I am at once too much and not enough 

I lock you in when you are out and release you when you are in 
I am too full of noise and too quiet 
I am not so much different as more 

I am the warrior within; the inner strength you cannot see
I am a desperate thirst for knowledge, for proof, for fact

I am all you are always 
I am never apart from you

I am the wild stallion you tried to make cart horse  

Let me run and you will see 

I am Autism 

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.






Flat on the Mat

I’m tired from things I had to do – that you didn’t make me – you were just being you.

I’m all used up from pushing so hard – to get there, to be there, to go the nine yards.

Again and again the pull of the norm; the done thing, tradition, weathering each storm.

No one knowing how unnatural it felt to never have nothing but what’s in my head.

So quiet now is needed more than before to make up for years of locking its door.

Taking what’s needed like a famine starved hound and taking extra while hitting the ground.

How long can I lie here? Can it please be forever?

I don’t want to be like That again ever –

That busy and shaky and buzzy and tired, and hopelessly desperate because I’m not wired

Like you and like them and the ones who set rules. Who mingle in parties and offices and schools.

Applaud me for trying, for getting a first on how to behave though it made me feel worse.

But please understand it took more than too much and I’m not even me now it sapped me such

That here I am begging: “I can’t carry on but I can’t even tell you because it feels so wrong – To crave that much quiet and empty and slow.
And will you understand?
I really don’t know.”

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. 

Anxiety is a Bastard 

Anxiety

Anxiety prevents me from speaking my mind. And on the rare occasions I do, it prevents me from backing myself up, despite being bright, opinionated and strong-willed.

Anxiety prevents me from entering conversation that means a great deal to me, about things I have some knowledge or experience or a great passion for.
Anxiety stops me saying words I want to say to you, to him, to her, to them, to the world. It holds my tongue.
Anxiety prevents me from standing my ground. From standing up. From being proud. From being counted.
Anxiety does not let me be the person on the surface that I am inside. It does not let you see me, it’s does not let you hear me. It does not let me fight.
Anxiety does not let me give you everything I want to give you nor everything you want to give me.
Anxiety makes me look weak though I know I am strong.

It makes me look cold though I know I am warm.

It makes me lose words though I know I have many. So, so, so, so many.

It makes me hate me though I know I am loveable.

It makes my world small though I know it is vast.

It keeps me awake though I know I am tired.

It keeps me active though I want to relax.

Anxiety steals, and breaks and hurts and lies.

Anxiety is a bastard.
An absolute bastard.

I will never beat it. But I know it is wrong.

Life in The Wind Tunnel

I don’t mean to be self-indulgent but I feel this needs to be said. It’s something I keep not saying completely but it’s so huge. 

As 7th April is my 3-year autismaversary and represents the culmination of 3 years of deep thought, realisation and listening to others who deserve a darned site more understanding, I need to say something apparently simple and maybe obvious but incredibly important: 
When you’re autistic, you don’t have a choice about what bothers you.

Life blares at you and glares at you. Some things torment unbearably and create uncontrollable inner turmoil but you are told to “suck it up”, to “just don’t let it bother you”, that “it’ll soon pass” and other unhelpful crap. Or told to look at things from others’ perspectives when that’s all you’ve been doing all your whole bloody life long. More sympathetic people give you well-meaning hints about mindfulness, about coping, about letting go or about what works for them. Mostly about not being you. 

But. A lot of autistic people instictively know how they will feel safer and less tormented. They will have a safe activity, a safe sound, a safe place that they will escape to or attempt to escape to. We effect habits to release ourselves often without knowing we are doing it. 

My safe space is my mindfulness, is my coping, is my letting go. I’m clever enough to have worked this out, worked on it and solved many of my life’s coping problems, and gradually created a personalised fix for overload and anxious thoughts. It is what works perfectly for me and my inbuilt feeling of needing to escape, and it brings the greatest peace, joy and healing. It’s my pills, my alcohol, my sweet tea, my hug, my long hot bath, my counselling session, my night out with the girls, my retail therapy and my big long scream at the world all rolled into one. I know how to fix myself, I know how to keep going, I know how to find calm and peace and I am so so happy that I have found self-acceptance and a way to be me, safely and naturally. 

And breathe… 

But if my safe space and time in it is interrupted, I am distraught as if I am being denied oxygen. I literally breathe in short shallow breaths. My heart beats too fast in an attempt to cope. I am massively affected. 

I don’t choose to be massively affected by having my safe space invaded, I don’t choose to be completely beside myself and panicky. I don’t have a choice. I need a safe space and I need peace. When it’s compromised I can’t cope. It’s like cutting off my oxygen. Really. This one’s not something to meditate through. 

I’m not like everybody else. I am highly highly tuned to everything around me. I need somewhere where I can tune out from humans and society and tune into nature and wildlife. Autistics need their thing – whatever that is – that they can tune into like an empty engine being hooked up to fuel, like a dry desert lying in heavy rains. Like a starving baby being reunited with its mother. Each one of us is different and needs a different thing, but we need something that lets us out of the constraints of a non-autistic society. 

It’s as important as air and water, and without this I suffer from Safe Space Famine and become agitated. 

Something is giving me palpitations right now, it’s making me feel unsafe, invaded and rather rattled. There’s nothing I can do about it and no one I can complain to. I’m lost and alone and pacing and wondering if this will be the time I fall. 

It’s the story of my life. 

Coming down from a bad couple of hours one day this week, when everything began to feel more lucid again – in fact, perhaps the height of lucidity as everything fell back into place and the latest storm cleared – I explained being me to my husband:
‘It’s like having vertigo and having to spend your whole life always living on the edge of a cliff. Always terrified. I know where I will be safer and suffer less. I want to be safer and suffer less but I’m not allowed to move away from the edge and be calm.’ 

And while I see this as an abnormality in my brain if you like, I want to accept it and live with it. I’m not going to change so I need my environment to change. I need to be allowed to move away from the edge instead of fighting vertigo or learning new climbing techniques on top of everything else I battle and absorb and internalise. It’s as if I accept me but life around me doesn’t. 

I said it might be difficult to understand if it’s not something you feel yourself but he said it explained very well what he saw me going through on a regular basis. I think he is beginning to see that getting away from the edge is the best and the fairest thing. 

Of course he can’t completely understand. The kind of chronic anxiety, sensory onslaught and inability to filter things out that I suffer from is not easy for most people to really process. And the needs I have are not easy for most people to understand: 

No sudden noises, no surprises, no practical jokes, no telephones ringing, no unexpected visitors, no unexpected noises or voices when I’m alone. No repetitive or constant noises that overwhelm or compete with other sounds. 

No throwing me into situations I haven’t prepared for. 

No invading my safe space. 

Space invaders not welcome. 
Autistic people need to be allowed to choose their safe thing, their survival technique, their way to live just as everyone else chooses not to live in a wind tunnel being pelted with rocks with heavy artillery noise firing around them all the time. 

“Hey just get a stronger hair tie and wear a suit of armour and some ear defenders! Suck it up! Learn to live with it!”  

No. Get the hell out of the wind tunnel.  

Am I making any sense? 

Peeing Standing Up: the trouble with autism “awareness”

The trouble with Autism “Awareness” 

Where is the integration, the facilitation and the understanding? 

People say they’re “aware” but they don’t facilitate the differences, and open their minds to how life could be so much easier for us. This is why I see acceptance as so much better than awareness. 

Being aware but not providing means for autistic people to function is like expecting women to use urinals. It makes us seem more faulty than we are because we’re always struggling with how to cope with systems that don’t include our needs. 

A lot of mental health problems in autistic people are as a direct result of living the wrong life. 

How about thinking; ‘I can see how this might not suit you. You shouldn’t have to do this’ ? How about asking what you can do to make life more comfortable rather than assuming  there is something wrong with us

I originally wrote the opening comments above in a group for autistic women. We are diverse, interesting, wonderful, inquisitive, emotive women from all walks of life with vastly different experiences of life and vastly different personalities and opinions. The support and acceptance between the women is truly lovely. We have lots in common and we have lots not in common and there are heated disagreements but I’d say the pervading themes are of frustration at a lack of understanding and exhaustion from living in a modern world that doesn’t try to accommodate us or alleviate our pain. 

More non-autistic people are pleased with themselves that they are now “aware” of autism, and – bless you – you all “Love someone with autism” 😖 … thanks for that… but that doesn’t mean more people understand or listen or are prepared to challenge themselves on their own actions and assumptions.