Skip to content

Archive for

Seize the Calm

IMG_5574It’s ten-thirty in the morning and she’s standing on the step stool at the sink in the utility room in her mismatched pyjamas: the top is age 7 to 8 and the bottoms are age 9 to 10. I don’t get to choose what she wears these days. She hasn’t shown any interest in eating yet, but she’s only been awake for half an hour so there’s no hurry. She’s humming to herself as she cleans out her painting stuff. She does this unprompted now. The cough she had at school last week has nearly gone and there’s a gentle, wholesome, restful feel to the day.

I ask her where she is on the contentment scale. I don’t know if she’ll know what I mean. I don’t even know why I asked – well, I do know, I’m just wondering why I asked in that way. I guess it seems less intrusive. It’s become an instinct not to pry too much and instead wait for information to be offered.
‘Seven point nine,’ she responds, taking it surprisingly seriously and providing me with a proper thinking face.
‘Oh. What’s bringing that number down?’ I want to know.
Apparently there’s some crusty stuff in her nose that’s bothering her. She can’t pull her chin right down and completely stretch out her face – like that: I get a demonstration. That’s all that’s wrong. She needs to wash her face with warm water, I offer. But it’s not bothering her that much apparently.

I’ve spent all week feeling guilty that we don’t take family holidays when everyone else does, that we don’t organise play dates every week, that we don’t have any kind of plan or itinerary to get up early and traipse around a country pile or a theme park, a museum, a mountain or a cycle track every day, or even every other day, for the whole of half term holiday. There are no long car journeys, no trains, no planes, no boats planned. No foreign shores, foreign foods or foreign sounds to experience. I feel guilty for being me, for being us, for having a business that can’t be left in school holidays, for having anxiety, for not driving, for struggling with the phone, the doorbell, and the pace of life other people seem to keep. My guilt is endless and repetitive; my comparing myself with others comes back time and time again even though I’ve told myself it’s wrong to do this to myself.

And it is wrong. It’s not necessary.

Because right now, right in this moment of peace and quiet humming and trickling water sounds; watching that face in concentration, feeling the planning and the self-organisation going on in that small body, I wonder why all the guilt?

Is she not loved?
Is she not well-rested?
Is she not warm?
Is she not well-fed? (she had breakfast five minutes later)
Is she not calm?
Is she not content? (seven point nine)
Does she not get to make decisions for herself?
Does she not know her own mind?
Does she not have freedom?
Does she not laugh and joke?
Does she not get fresh air and sunshine?

She’s an autonomous girl with some great creative skills that need the quiet and space we provide. Whether we always provide that peace through necessity, circumstance or out of choice, it suits her. She has grown calm and thoughtful and imaginative.

And it’s not like I didn’t try all the other stuff. I spent years thinking the best thing for our first two children was to be busy, busy, busy. It turned out I was wrong and I had to scale down all the constant activities. It turned out they didn’t want or need ballet+gym+football+tennis+swimming+musiclessons+dance+horseriding or even activity-packed family holidays. They were much nicer and calmer and easier to communicate with when they enjoyed a far greater chunk of more unorganised, unscheduled time. And they slept better too. It isn’t fact that a big, deep sleep follows a crazy-full day.

It’s almost as if people have become afraid of being at home these days and I had let myself get sucked into that fear. And yet when I don’t let myself get dragged into the latest habits of the modern world I find being at home is amazingly good. Keeping your kids close and chilling out is super-rewarding and leads to superbly restful sleep.

Mostly I find myself feeling glad I don’t drive, glad I am forced to keep my own rhythm. I’m mostly happy with the pace of life we have settled into. We take our busy days when we feel it’s a good day to be busy. We can’t completely arrange ourselves around the weather, the mood in the air, our health, our guts, our inclinations and our children’s spirits because of the laws around school attendance, but we have found something close in this crazy world of routine, clock and calendar slavery.

If my guilt is associated with comparing myself to others rather than measuring our own happiness then it’s pointless: a wasted effort, and time I could have spent feeling blessed for what we do have.

In two days’ time, the law says it’s time to get your children up in the cold early mornings again and kick them out of the house for six and a half hours. When they come back tired, cold, grumpy and hungry they will no doubt have homework or after school clubs and will be well on their way to the next virus, sulk or temper tantrum but for today life is brought to us by pale green paint and an easy-going vibe.

Lucky me.

IMG_5577


How to be a Kettle and Talk to Onions

shutterstock_139529804Women with Asperger’s and autism slip under the radar again and again and again. We are so bloody good at “pretending to be normal” that we get away with it even when we shouldn’t and should instead be living a far less anxious existence.

If there were ever any doubt that I am not normal, today I squashed that flat.

I broke something precious for the first time in ages just to try to break a cycle and find some peace.
Usually I am an eternal sock-puller-upperer. And I am a professional protector. I feel it my duty to not drag people into what I am going through. This doesn’t mean I lie – if you ask me I’ll be honest, but I will do my best to protect people from the raw state that life has often left me in, and pick words that will cause the least damage. It’s not entirely successful but the times I have battled and won far outweigh the times I’ve caved. Feeling I need to punch my way out of a box is common for me but I pull up my socks, take a deep breath, strike the Warrior Pose, and think seriously about what’s worth making a fuss about and what’s not. My guess is that I have about a ninety percent success rate of busting through a day unscathed, and, importantly, without letting any scathing show. Yesterday, for example, I shouted, ‘I’m not finding this even remotely funny!’ at two onions when no one else was about, and spared the more sensitive creatures of the world my troubles. I know about protecting people, about putting people first, about internalising and keeping the peace. I mostly feel practical, productive and caring, and in tune with the world around me.
Apart from a couple of minor differences such as not driving and not participating in school-gate chat, I’m a fairly typical woman and mother. I often wonder if we made a mistake and I’m neuro-typical after all.

But then come the days when I remember the world is not my oyster, I am not free to make long term plans like everyone else or stick a pin in a map and see where I end up, and live a life being thrilled by surprise and adventure. I am at the mercy of Bad Sock Days and no amount of shouting at onions will help me. I take my adventures on a small scale, short-term whim: in the kitchen, in the garden, in my online book purchases. When I step away from my limitations I am taking enormous risks and the sense of failure gets to beat any sense of “at least you tried” far, far, far too many times to make many risks really worthwhile. Besides I don’t get the same thrill that other people describe. Life is adrenalin-fuelled every single day anyway – I don’t need to force it. Quiet days are my adventure.
So I’m mainly happy that I’ve found some way of combining control, happiness and being the best person I can be for my family whilst retaining a great deal more peace than I think many autistics achieve.

I can’t remember the last time I cried and deliberately broke something – I can go for long periods of time being very restrained, and for an autistic person I believe I do the internal talking to stuff very well indeed (I read somewhere that autistics are really bad at this. Please tell me if you think it’s not so). I pride myself on my ability to hold it all together and keep on keeping on for long stretches of time. Since I was very young I’ve almost pulled off conventional and I’ve been working hard at it ever since. I’m so very nearly a natural now. I occasionally see a flicker of “What was that?!” flash across someone’s face; only for a moment though and then I’m back to getting away with it. I adjust and readjust to fit others’ needs and am on alert for what those needs might be all the time. I’m often seen as less weird than “normal” people!
I seem to have a knack for putting my own needs aside for days. Other people’s happiness gives me happiness and I strive to recreate that satisfaction when I can. One of the stereotypes of autistic people is an obsession with a special interest to the detriment of all else and a tendency to bore others with that obsession. It doesn’t present in me quite like that. I do have a project-minded brain and I can obsess about all sorts of things but I mainly obsess about people and home-life, and spend my time organising myself around those. I enjoy listening to other people too and hearing about their lives. I am a quiet observer. My decisions about what to do every day are based on what is needed of me and I readjust this regularly as things change. It’s not something I have to think about too much and I’ve always had good instincts for my children’s needs. As parents, our struggles and rewards are the same as anyone else’s and we are pretty conventional and do pretty conventional things with our kids.

But today I felt so trapped and frustrated I didn’t know what to do and I knew there was none of that keeping on stuff in reserve. I felt life was picking on me, preventing me from having fun, I felt I was unable to appreciate a day with my family because something more powerful than my wishes, my plans and my organising – something even more powerful than night turning to day was controlling me. You can make it Monday, you can make it my husband’s day off but I can’t have it. There may as well be no Monday.
It looks, from the outside; I’m sure, like a child angry at not getting her own way. It feels more like a lone battle and a desperate grasping to regain control of myself. There’s an intense frustration in having no control. The inability to put one’s finger on exactly what is to blame is, I suppose, infuriating but there’s no real anger – just an immense physical fighting instinct whilst simultaneously longing for peace. Wanting to bat away a mosquito, perhaps, only there is nothing there but the knowledge that something is after me. So what the hell do I bat at? I have to feel I’m doing something in my defence. The loneliness and helplessness and a sense that this is a journey I am taking on my own and I don’t want to go on has me running in circles trying to find a place of calm away from the turmoil but it hounds me. I want to tell someone, I want to talk about it but I’m an adult, I’m a mother and moreover there is no reference point for what I’m feeling. I’ve never heard anyone talk about this situation before. It’s all “why?”s and no answers. Add to this a history of never talking about this to anyone ever in my life and I’m left with mental energy and physical energy formed from an urge to escape rather than an enthusiasm for anything. This useless energy and the need for everything to stop leaves me with an urge to throw something. Throwing seems to give me a sense of hurling the unwelcome, unproductive energy away from me.
I didn’t want anything from anyone, I wasn’t cross with anyone so I chose things. Unfortunately today I chose my iPad to throw because of the sound it would make as it hit the radiator.

Now I’ve had a little time to think about it, I think I know why it happened today. I think I was waiting until it was safe: until there was another adult in the house, another adult to take my place. I could go and throw something alone and away from everyone. I think this morning’s meltdown has been building for some time and there are probably allsorts of triggers. I don’t really know. I never do. It’s all guesswork. All I know is I couldn’t do anything until it was over. We had made plans, but I had to step out of them. I had to admit I couldn’t be involved. I tried to put my feelings and reasons into words but I couldn’t. I paced as I waited for everyone to leave the house, I distracted myself by grabbing clothes from the wardrobe and piling them onto the bed in some kind of pretence of a clearout. The constant physical movement and using up of energy was useful if nothing else.

When everyone had gone and I felt the silence, I walked around the empty house, tears flowing so fast and hard that my face hurt and I was temporarily blinded. I had to stop and sit down to cope with the physical exhaustion heavy crying brings. As I sat waiting until I could move again, I noticed a noise like a whistling, stovetop kettle just as it begins its crescendo. I always found that sad murmur just before the whistle disturbing – to me it sounds like a wounded animal. I realised the noise was coming from my throat. I missed my family, I wanted to be with them, I didn’t want days like this, and I didn’t want to subject them to my turmoil either. What I really wanted was to belt out the emotional pain I felt but instead I had trapped it inside my throat.

When I see caged animals running themselves at the bars of their prison, chewing on themselves, repeating a head movement rhythmically or pacing in a small space, I recognise the pattern of a living thing that has had to contain one or more instincts for too long and has been forced to live a life they weren’t completely designed for. I recognise the need for something physical – even pain to create a release. I recognise the powerlessness, the feeling of being trapped, of not being able to run away. Of no other choice.
Some captive animals may perform better than others. Believing they have all their needs met we can be fooled into thinking their lives are good enough. But we are always forcing them to be something for us, and therefore we are not being entirely fair to them.
But what about animals born in captivity – those who know no different? Or maybe they do…? How much do they sense or feel that life is somehow not as it should be?

I think autistic people are like animals born in captivity. We are always forcing ourselves to be something for other people and therefore we are not being entirely fair to ourselves. And unwittingly other people are not being entirely fair to us. We are trapped in systems where society cannot be rearranged for us. Instead we have to rearrange ourselves constantly for society.

It’s impossible to describe to a non-autistic person why we don’t do things we want to do. Why we turn down fun, why we let people down. Sometimes the most simple yet pleasant experiences seem impossible, and how on earth can we explain that?!

Taking it right down to the most basic human needs might help perhaps. Sometimes it’s even impossible to eat: to carry out the everyday function of fetching food, lifting a fork to one’s mouth and then swallowing – let alone digesting. Similarly, it can be impossible to sleep sometimes. It feels as if everything has to stop while some other mystery process has to take place, perhaps.

Sometimes things are cancelled, sometimes offers are simply never taken up, sometimes things do happen but they are awful and I don’t cope. I can’t decide whether it is a day to talk myself into or out of something. I juggle with different reasons regularly and struggle to decide which reason it is each time.

There are four main reasons I can think of:
The Anxious Excitement Reason. I am looking forward to something so much that my cortisol goes bonkers and I experience the same symptoms as fear. Even when I know this is the reason I become anxious about my anxiety and can’t remember why I wanted to do the thing in the first place. Pulling out would mean an end to my symptoms and I would feel safe. This is usually the only time when I should consider pushing on through and taking a gamble with my anxiety but it’s a fine line and there are times when staying home really is best for my health. It’s a hard one to explain to people and is the one that causes the most upset. For weeks or months (even years) afterwards, it’s often distressing to try to deal with my decision. People simply can’t understand.
The Social Exhaustion Reason. I have already pushed myself through things that have drained me and overloaded me, and however much I want to do this thing (or not) I am exhausted and don’t have the energy to make it happen. It’s just not possible and I know I will have no words left in me. I may even be mute for a while.
The Uncertainty Reason. Some thing or things about the event will be so unfamiliar or out of my control that I can’t cope with all the unknowns and I can’t foresee how I will react to situations for which I haven’t planned. If I don’t know exactly how or when I will be getting home I panic about being trapped, for instance. I also fear my own performance and know I will probably not cope. Again I become anxious about my anxiety and everything becomes about trying to feel well.
The Meltdown Reason. For me this is a rare and rather frightening one. It comes like lightning, shocking me and terrifying me when it arrives out-of-the-blue. Rather like pre-storm heaviness, I can feel something building but I’m not aware of the extent of my agitation until something has gone wrong. And it can go wrong quite quickly. Because my concerns are so foreign to the rest of the world, I am not able to voice or communicate them, and I am left at the mercy of something extreme. Usually a fairly eloquent person, I find words in short supply while a physical and mental pressure bears down on me. For the sake of other people I try to find words, but they are all wrong and I hear myself say things I’m not thinking. They are just spare words. Spit words. Missiles. Somewhere deep within me there is a tiny guiding force telling me to get away from other people and give up on communication for while. This reason is complicated. It is an entity all in itself. Another character perhaps. It sits on the chest of who I am and who I want to be and what I want to do, and says, ‘No. No. You can’t move. You can’t do this, that or any other thing.’ The energy is different. It’s less anxiety and more frustration. My guess is that it comes after anxiety and is some kind of fallout I’ve stored until I’ve stored too much. It is perhaps a useful and healthy release to give my body a break from all the internalising I have to do. I know very little about what is happening. All I know is I can’t do anything until it passes. Fortunately it can pass quite quickly if I act. I hate it and I fight it. It always wins though. I have to give up my right to decide to push on through and give up my right to choice and simply let go.

The way I make choices, therefore, cannot be the same as for most other people. Sometimes I simply can’t make choices. I am not allowed to. The world as it is – as it was designed by other humans – is not mine in the same way it is for other people. I have to repeatedly stop myself from making any kind of long-term plans because I know I am not consistent.

So today I am missing something I was looking forward to, something I would have enjoyed. Returning to my captive animal analogy: some days a banana through the bars of the cage may be the most delicious most-welcome thing and I desire it terribly – so yes, the “It will be nice and you would enjoy it” argument is true to a point, but a day chilling out in the rainforest is even more necessary, and when all is said and done, I must bow to the instincts of the caged animal who has missed the world she was taken from and is not looking for thrills and enjoyable experiences all the time but for a peace that can only be found from following one’s instincts.

The times I’ve written about bad days, bad experiences, the bad stuff about having Asperger’s far outnumber the times I’ve written about the good days, the brilliant days, the mediocre days. And yet the good and mediocre days are the ones that really fill up my life. They are about getting on with stuff and are often really rather boring and normal to read about. I tot up minor struggles with noises, lighting, smells, busy shops, too many people talking at once, and live with anxiety daily if not hourly, but I accept that this is my life, this is my normal and I internalise and find ways around things. I cope, and my life is mostly boring and normal – and for that I am grateful. But I think it important to share with other autistics – and anyone else good enough to read this – some of the difficulties we experience, and try to put those crashing days into words so that people like me don’t keep on feeling we have no reference points for our lives and experiences. There’s stuff going on in our heads that no one understands anywhere near well enough yet. We don’t even understand it. It’s time understanding moved forward a bit faster, and what better way than reading about raw feelings and actual experience as it happens rather than only ever picking up a textbook written by experts who are not autistic, or a humorous novel based on mocking autism stereotypes?

shutterstock_143264182


Honest to goodness, Anxiety to Asperger’s: a year of change

It’s a year since I wrote this difficult post about anxiety.IMG_6195
It changed my life. It showed me that it pays to be honest about your struggles and to think about why they exist. It eventually led to my Asperger’s assessment and a whole new way of thinking about myself and my life.
I have changed so much in twelve months. I don’t even look like that anymore. And the inside of me looks different too. It’s been a tough year mentally, and I’ve had some pretty bad times, but mostly it’s been very positive. The turmoil in my brain has, at times, been inexplicable. I’ve wanted to explode with frustration, to cry like a child when I look back at my life, to go back in time and change events – and in particular some painful interactions with other people, but I’m glad I’ve gone though it and it is gradually becoming less difficult. It’s hard to admit that – guess what? – there ain’t no quick fix. I’m stuck with this and these patterns in my life, but how much better to know what I’m dealing with than to keep expecting life to be easier and to keep expecting the impossible from myself. I know who I am now and I know how to make life a different version of easier – and a different version of difficult too for that matter. I’m learning to focus on a “different not less” tag and not a faulty tag. I’m learning where it’s important to make an effort and where it’s important to go easy on myself. Processing something as important as “you are not who you thought you were” is not something that can happen overnight and I think I will spend the rest of my life dealing with it. But it’s something I wanted to do and it’s something that has come with far more rewards than drawbacks. I think the most difficult thing has been dealing with preconceived ideas about autism and a feeling that people think I am broken, weak or inferior somehow. The stereotypes and lack of support and understanding make life more difficult than the actual condition itself. In itself my own personal version of autism is not a problem. Fitting myself around other people’s ideas and ways is the difficult part. Having a reason for that gives me new paths and helps me say goodbye to tired old rubbish. I have a better anxiety radar these days and I am learning – slowly! – to keep an eye on that radar. I can’t shrink my amygdala and rid myself of anxiety but I have spent a year getting better at recognising triggers.
So that’s me: Problems are BIG, worries are HUGE, conflict is ENORMOUS. I am UBER-sensitive and I notice things that other people don’t, and I have to decide what’s worth my energy, attention and upset and what’s not. I know I will keep getting this wrong because it’s constant hard work and I get tired and I make mistakes.

Life has been tinged with sadness recently as I’ve come to realise that a lot of my life that I thought I was in control of and was about me making decisions was not how I thought it was. I was led by my conviction that I felt different but there was no good reason for it and so things must have been going wrong because I wasn’t trying hard enough. I see how my social exhaustion and my fear of life, of the unknown and of my own failure got in the way of me being all the things I dreamt of as a child. I never went out into the world and found myself, I never became the primary or nursery school teacher I so wanted to be, and I never learnt to be more forceful with people and control the way my life went when I was younger. In short, I let people push me around and I didn’t realise it was happening. I guess people didn’t even know they were pushing me around because they had all the right skills to say “No” and assumed I did too. Occasionally I’ve found myself wishing recently that I could smash up my past and rebuild it.
But when I say “tinged” with sadness, I really do mean it. I am working more on the present than the past because that’s the only thing I can have some control over. What I have is good and it’s all the better for knowing that that big old amygdala was causing some big thinking and making things look more significant than they are (hmmmm… that’s complicated because when things feel enormously significant to the point of controlling your life then they are significant, but that’s for another blog post!)
Thank you to everyone who has stuck with me through this and not treated me like any more of a weirdo than I already was! And thanks to Elli​ for reading it (the original post that is) and giving me cause to think about myself a bit harder than I had previously been prepared to.

Ephemeral Flame

Do not let the brightness of my flame fool you
I am as fragile as any other
When I roar, fuelled by heat, remember:
Tomorrow I will be embers

My life is warm, is light, is colour
I climb, I dance, I shine.
But rains spit and winds whip
Take heat while there is still time.

%d bloggers like this: