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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.

Internal talking to














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

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?

Well done, me!

shutterstock_103132238My brain feels full of ping-pong balls at the moment. I’ve not blogged as much in the last few weeks as I had been doing and, as a consequence, I’m fizzing with all sorts of thoughts that are bouncing against one another and messing with my thinking, so I’m not entirely sure what will spew out as I write this.

Getting used to having an autistic spectrum condition – not just these last five months but also bringing the whole of the rest of the 44-year-old me to autism, getting her to come to terms with it and giving it to all of the mes of the past is like being thrown up in the air. I’ve been floating through life since February. Therefore, understandably, my thoughts have mainly been about autism and Aspergers, and how it affects me and my family, and the outside world’s perception – not just of me but also of what I say. I see how I am misunderstood a lot.

I’m a little worried people have recently lowered their expectations of me: that they may not trust my fury at injustice or others’ bad behaviour; that they may question my judgement; that they may think I am less capable of being a mother, of independence, of rationality, of empathy. I’m even wondering if they may be inventing unreasonable behaviour where it did not previously exist. That is, that something a neurotypical person may get away with, an autistic person may not get away with because of our “baggage”, if you like. To know someone is autistic automatically makes him/her seem more unreasonable. It happens. I see it. I’ve also read very very many social network posts by desperate “Aspies” crying out for the misunderstanding to stop. Unless you’ve been trawling through the groups yourself, you may struggle to believe what an enormous problem it is.

To be honest, I occasionally feel a little patronised. The unreasonable one must be the autistic, right? It’s almost like an escape route for non-autistics – a cheap way of winning perhaps. Am I being sideways glanced now, rather than being seen as a whole and an equal?

I feel a little as if I have been treated a little differently. Just a little mind you. I feel a little doubted when I raise concerns sometimes. And I feel people not trusting my sense of humour quite so much. Surely that can’t be sarcasm?! She’s autistic. Yet, yes, I am as sarcastic as ever! When I joke about my life, people are trying to fix me instead of joining in with the joke. If I said I tripped while out on my walk today I’m beginning to worry that people are now going to start saying ‘You shouldn’t be out walking alone,’ instead of ‘Whoops! You clumsy arse! I do that!’ (I haven’t tripped today. Yet…)
When I get cross about something and my husband rolls his eyes and says nothing, is he now processing my anger differently? Has he automatically put it down to autism and therefore not worthy of belief or debate or respect? Has he assumed I am being unreasonable?
Is he? I don’t know.
I guess, because I’ve been so open about my condition and my self-discovery, I’m going to have to learn to live with the paranoia of knowing people know now and I’ll always be wondering…

And Twitter has gone deadly quiet. I seem to have lost Twitter.

Is it the honesty?
I see how people see problems in my honesty, where I simply see honesty. Or is it the freakish fearful way society still views autism?

You, Dear Reader, are reading this through your eyes. You may have made some kind of conclusion about how I must be finding my autistic spectrum diagnosis to be a burden after all, or you may be nodding and thinking ‘See, I knew labels were a bad thing!’
The reality is that Asperger’s is a welcome diagnosis, a welcome label, and welcome identity for me.
For me.
My problem is how some, some, other people treat me, perceive me, read me and reposition me. What I want is not for people to decide what I am or am not capable of suddenly, what I must and must not be thinking, but to ask me – because I am in a better position than ever now to know what I am capable of and why some things seem daunting. When I didn’t have Asperger’s (that I or anyone else knew of) I was worried that people’s expectations of me were too high. Now I worry that they are too low. It’s like some assumption that I’m all autistic all over the place now and incapable of everything I’ve been doing for years, and all my days are filled with autistic awfulness. Yes, you can put my habit of screaming as if I’m being murdered when a door slams unexpectedly or the dog barks right next to me down to my autism. That is horrible and I shake for ages afterwards. I am easily terrified, easily startled, easily inconsolable if a noise breaks my safe noise level or breaks into my safe space. It’s all I can do to stop myself from putting my hands over my ears and crying. We can call that an unavoidable draw-back of my autism and my enormous fear and sensory processing problems and my problems dealing with the unexpected. And there are things that are an anxiety problem, such as going somewhere where I know I will have to deal with lots of people in lots of different ways. These are not new problems.

But my opinions, my abilities, my strengths, my rationality, my empathy, my sense of humour… all still stand too. And I am prouder than ever of my strengths. I see just how strong I have been, and just how capable – against all the badly-packaged stereotypes which cloud the individual variations. But I don’t feel others think I am strong or doing well and I’m trying to work out why.
It’s partly my fault because of my honesty and my blogging. I just don’t share enough of the good stuff, I guess. It’s difficult though. I’ve never been a bragger.

I write about a bad day and write nothing else this month, therefore I had one bad day in a month? Or were they all bad days? Well the truth is, most of them were pretty normal and average and I must have looked like a pretty ordinary person going about her pretty ordinary life to outsiders. The good thing is, that now I get through normal and ordinary and I think, ‘Well done, me.’

I’m not going to stop being honest. I actually don’t think I can. This will of course result in people thinking I am useless or not coping, but I feel duty-bound to share and reach out, and talk and talk and talk, and keep talking about autism and Asperger’s until everyone knows you can’t stereotype us and that the label is our label to do with as we choose. I want to support the autism community, and be another voice striving to be heard and understood.
I think what I’m trying to say is:
I’m autistic – don’t feel sorry for me!
I’ve got Asperger’s – don’t stereotype me!
I have autistic spectrum problems – don’t think I’m not capable!
I have Bad Aspie moments – don’t think I’m always like that!
I’m honest – and I’m going to try harder to be honest about the good stuff too!

When I say, ‘this is difficult’, ‘that was awful’, ‘this is painful’, ‘I didn’t want to do that’, ‘I struggled with this’, I often forget to say, ‘but I did it’, ‘I got through it’, ‘I made a conscious decision about the best way to cope with that’, ‘Holy crap – I’m amazing!’. And I often feel exhausted and torn, like I’ve climbed a mountain or wrestled a crocodile, but proud of myself, glad I survived, and the big kid in me wants others to say ‘I’m impressed. I know it’s tough for you sometimes. Go, you!’ Only they don’t because I’m an adult and they can see no mountain, no crocodile, no amazing feat.

Well done, me.

I don’t want to leave the comradeship and solidarity and common struggle I’ve seen in the last few months there where it is: hidden, desperate, misunderstood, outcast almost.

Please keep talking and sharing.

Under Attack: the meltdown phenomenon

Today is a pacing, ranting, door-slamming day. I am full of energy but no direction. I am spiked with frustration but no reason. I cannot pinpoint what is wrong or verbalise my intense distress. I try to guess at what is wrong but sentences are a mess and words won’t come and it all sounds stupid. It’s not the truth anyway.
I feel the close proximity of other humans like a bad smell. Their movements scratch away in the circle of my safe space. Today I need my safe space to be big and they are all in it, moving, making noise, being in my world. I must whisper when I want to shout, I must be polite when I want to swear.
Where will I go with these internal explosives?
So I pace. Up and down, up and down.
I rant. It’s all nonsense but I need to spit out words and hear the tension escape on my breath.

15 years ago we moved to a house with a field. I told someone I needed somewhere where I could run and scream. I didn’t know I was going to say that. I didn’t know why I said it.
I know now.
She asked if I did run into the field and scream, and I said no, just knowing I had the space made me feel better.
15 years ago I didn’t know I had Asperger’s. I just thought I was a freak.

Now we don’t have a house with a field. We have neighbours and a road and I sometimes feel the world is caving in on me. Today I feel bombarded, confused and hyperactive. I want to release all my energy but I need to know I won’t find obstacles. Today is a day I cannot cope with obstacles. Like a toy car with a pull back motor, I want to know I can just go and go and go until I have completely unwound in the direction I have chosen. Changing direction is tough. It confuses me and baffles me, and on days like today it tips me up and leaves me with my wound up motor whirring haplessly.

I worry about others with Autism and Asperger’s when I feel like this. Where are they going? What are they doing? How are they coping?
I have different rooms, a garden, a bicycle, we live near the sea. I can play music, mow the lawn, lie down. I can keep searching for the right coping strategy or tell people things are not right and I need out. What do those without my choices, without my language skills do?

Everyone with autism needs something they can do and/or a place they can go to to release, rest and renew. To help me, I am writing this and next I am going to take a brisk walk. If I still feel overwhelmed I can garden or sit quietly alone. Choices and freedom and strategies I do have. However awful today feels, however much I feel like screaming, I know I’m one of the lucky ones.

Find your ideals, not your idols

nofaceWe don’t tend to watch TV talent shows or a lot of sport in our house. I see how easily children (and adults) can become overly impressed with celebrity, with superficial adoration from a crowd, with narrow, one-sided ideas of success and achievement that, rather peculiarly, seem to exclude almost everything that is truly good in the world. And yet somehow modern media and its ideas of good role models has got to our youngest child: through kids’ TV, through school friends, through films and radio. She has been fed this notion of being noticed, of being the centre of attention as some kind of ambition. Like so many young people these days her list of “Things to Be When I Grow Up” includes a singular rather than a group mentality.

For me, the best people are not celebrities, not sportsmen and sportswomen, not winners, not rich, not on TV talent shows, not actors, not royalty, not in government; not Richard Branson, David Beckham, Barrack Obama, Cheryl Cole, not even J.K. Rowling or the lovely Stephen Fry. No, for me, the best people are the ones we will never know: the ones not striving for recognition, power, money, top jobs, top positions, top earnings, or top speeds. Our best role models are the people we may probably never meet or just never notice. We may pass them in the street without being awestruck, they may stand quietly behind us in the queue, they might deliver our online shopping or serve lunches at our children’s schools.

Once in a while you might catch a glimpse of them in a newspaper photo holding a placard in a crowd, or their head bobbing amongst many on a TV screen as they join in striving for a better world. Just one in a number fighting for a cause, content to be one of many, part of a struggle, part of a solution.

The photo next to a description of a true hero, a true role model, is an empty box. They don’t want our attention or strive for our adoration. We must find our role models in ourselves and accept that the true heroes are lost in the crowd -because by singling ourselves out for some higher place, we put ourselves before others and therefore we can no longer be the best we can be.

I don’t know exactly who all the true role models are for me and my children, but I know they are out there and I know what they do. They think well of others, they help others, they think about their actions and how they impact on others. They teach, they nurse, they fix, they heal; they inspire quietly, slowly and indirectly through consistent goodness and thoughtfulness and not by some crazy drive for individual achievement.

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