World Autism Awareness Day: we are not broken 

shutterstock_258287717 2Today is World Autism Awareness Day. You know about autism: you’re “aware” of autism, right…?

Like depression and other mental health conditions, and like homosexuality until very recently, autism is vastly misunderstood, feared, and seen as a disease, as scary, as wonky or as something to be cured or avoided. 

It is none of those things. It is about how our brains are wired through our genetic inheritance. 

Try and forget the word “disorder” if you can.

Through my parents’ genes I inherited a brain that puts me on the autistic spectrum. It is so not a disease and not scary and not wonky that none of us knew for 44 years. 

The main problem I have had in life is a feeling of being a little different and not knowing why. Some things have been a struggle and I could see they weren’t a struggle for others. These struggles were mainly around school and the expectations of others.  

I was forcing myself to fit was all. 

When I don’t force myself to fit – when I just get on with being me – I am perfectly happy. Now that I have read and read and read and informed myself, I am wiser.  

Just like the majority of people in the world I had a narrow and inaccurate view of autism. I’m not like Rainman, I’m not like the boy in the Curious Incident of the Dog in the Nighttime, I’m not like Don Tillman in The Rosie Project, I’m not like Sheldon in The Big Bang Theory.
Those and other narrow views caused me to spend my life convinced I was not on the spectrum. But then all the reading and the studying of the lives of real people with real autism and, importantly, of women, with their individual not matching stories made me see what a vast and complicated spectrum it is. 

A person with autism is a human being and an individual first. We are not part of a clan of people with matching needs, likes and dislikes. And we don’t have matching behaviours either!  Just like people who are not on the spectrum we all have different struggles, different senses of humour, and different views. Some of us are feisty, some of us are gentle; some of us are sociable, some of us are shy; some of us hate noise, some of us love noise; some of us have hobbies that last a lifetime, some of us don’t; some of us are creative, some of us are not; some of us like sarcasm, some of us don’t; some of us have an amazing talent, many of us don’t! Some of us can cope with being teased, some of us take things too literally; some of us have a favourite chair, some of us don’t give a damn where we sit. Just like everyone else. 

Some of us stand out as looking different, many of us don’t… etc… etc… etc… 

We are not dangerous, broken, weird, wrong or waiting to be cured. 

We just are who we are. 

The hugest problem for most people on the autistic spectrum is the preconceptions and ignorance of others. 

Sure there are some differences between brains on the autistic spectrum and brains not on the autistic spectrum. These differences can affect our senses so that some are more defined, they can affect our fear so that different situations can be more scary, they can affect our socialising because reading social cues can take place more slowly, and they can affect our organisation because doing too many things or switching tasks quickly can be difficult. They can also affect our energy and our sleep patterns because trying to not let our differences upset others is hard work. 

Some people on the spectrum have such intense difficulties that they require a lot of care and struggle to be understood and to be independent. But behind those difficulties they are a whole human being. 

Many of us don’t require much – if any – care. We simply want a world where we can live comfortably without anyone saying we are broken, inferior, or needing a fix. 

The best fix the world could give us is respect and acceptance.

We just have to be allowed to be us and not think there’s anything wrong or unnatural.

All the things that are a big deal or can seem like a big deal would be much less of a problem if people could see that like left-handedness we just have to adjust our position sometimes to do the same things as everyone else and not try to be right-handed; like homosexuality we just have to be allowed to be us and not think there’s anything wrong or unnatural.
We are all different, all of us everywhere. Human beings are complex and intertwined. Race, sexuality, size, health, hair colour, shoe size, likes, dislikes – they are all differences. Autism is another one of those differences. Big deal. 

Is it a big deal? No. Getting educated about it, putting to bed your preconceptions, seeing how society misjudged you and how you misjudged yourself is a big deal. But autism itself isn’t the big deal. It’s the way we fail to work around it that’s the big deal.

Seeing autism as a disorder, as something that has been caused like a disease, is damaging – it’s backward-thinking.

When I think of the stinking cold I am currently suffering from and the terrible night I had with burning throat pain and trouble breathing, how I am struggling to operate, I feel broken – I feel not right.
When I think of the terrible, dark days surrounding my father’s illness and death 6 years ago, of the days holding his hand or talking on the phone and listening to him talk about the progression of his illness, of his death, his funeral and the months following, I feel broken – I was not right.
But when I think about autism, about my own discovery and acceptance, I feel that society is broken, education is not right. I don’t feel broken – I feel perfectly alright.

Each and every one of us on this planet is on a spectrum of differences. When we learn to accept that and those differences as part and parcel of being a human being we can stop locking them away in categories marked “disorder”, stop looking for cures, and stop seeing difference as such a big deal, and move into a world where our perception of what a human being is is naturally wider and more accommodating. Once you educate yourself about something, you can stop making such a big deal of it, it seems.

Remember how we used to think of women as inferior to men? How we used to think of black as inferior to white? How we used to think of gay as inferior to straight? Well, we’re still thinking of autistic as inferior to not autistic and as something that needs a cause and a cure working out. Can we stop that please.

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?


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.

The Devil and the Deep Blue Sea

How Autism Burnout sits away from depression

Partly because of the immense gratitude I feel for all the concern and messages of support I received a few days ago, and partly because of my solidarity and commitment to my autistic readers, I felt a kind of duty to update my blog today. I also didn’t want to leave the last post hanging in the present because it was of that day and that day has gone.

After an online chat today with fellow aspies about autistic burnout and the confusion with depression, I have a renewed determination to get something, if not straight, a little partitioned perhaps on behalf of us all.

My last post 6 days ago (it seems like so much longer), was rather desperate.
But if I hadn’t written it down, I think I would have almost forgotten about that day – or at least quite how frustrated and paralysed I had felt. Soon after writing it I felt ashamed and embarrassed. How could I be so exposed? So powerless?
I was quick to move on and work on solutions for repair. I didn’t like that version of me and I didn’t post the piece to my front page but left it in the January archives to be forgotten. Nevertheless, I don’t regret writing that post. The difficulties we experience need sharing and airing and when we find others experiencing similar we feel a little vindicated somehow. So now I want to come back and share how quickly it was all over and how quickly I repaired.

One word I used to describe how I felt the following day was “stronger” – as if on the day of my blog post I had been somehow weak. But what keeps chiming again and again in my head is how strong I had actually been; how I hadn’t been weak at all.

I think it more appropriate to describe the way I felt as “battling”. You see, the very word “weak” must imply a lack of strength. A fisherman in a storm doesn’t wreck his boat because it or he is necessarily weak. A man killed by a tiger doesn’t die because he is weak. A grand old oak doesn’t become uprooted in a hurricane because it is weak. A woman doesn’t scream in childbirth because she is weak. Things hurled themselves at me, I fought, I became exhausted but I didn’t give up. I simply took some time to scream (metaphorically) and make it known that I wasn’t enjoying the experience.

What I was was honest.

As an autistic person, the main problem I have is actually telling myself to stop trying to be stronger. I am used to battling, used to finding everything hard work, used to being exhausted, used to having unexplained health problems. When I’m asked if I find something difficult, I don’t have the same reference points as the person I’m talking to: it’s all difficult. But I didn’t know that. I thought that was just how life was. Difficult is my normal.

What all this means is I have episodes or periods of burnout. And these episodes of burnout are similar to depression to look at from the outside. But it’s not the same. Not for me anyway. And, after having a couple of years being convinced I must be depressed, and reading other people’s experiences, and then eventually reading about autism, I can see significant differences – and not least in the solutions. I must add – importantly – that I’m not excluding depression. I can see how many people after years of struggling with autism are depressed, I know that depression hits people from every walk of life and I’m not excluding autistic people from those who might experience depression. I can see how depression and autism get mixed up and sometimes overlap. But they can also be separated.

I have anxiety. I have autism. I don’t have depression.
I get frustrated. I get sad, yes, but I don’t have the long periods of darkness, of despair, of the hopelessness that can be so dangerous.
I feel debilitated by social exhaustion. I feel overwhelmed by over-stimulation. I feel trapped doing things I can’t control or I can’t stop.

At the risk of sounding ungrateful, the advice people give me for dealing with depression doesn’t really work. And that in itself must be a clue.

I tried to think of an analogy for the way a burnt-out autistic person might feel and how the fix works, and the image of a hamster wheel came to mind (this might be because I saw one on TV last night!).

So let’s try this…

An autistic person pushing themselves for too long can feel as if they are trapped on a hamster wheel. They can run at good speed around and around and around. They’ll look as if they are doing well. But at some point they will feel like they really can’t go on any longer, and one of the first things you might notice is that they stop communicating.
A neuro-typical or non-autistic person might de-wheel, eat, have a chat with a friend, have a sleep and get back on again. When they do get back on (even if it’s something they don’t particularly want to do), they’ll feel the benefit of doing something else for a while and will feel re-energised by the socialisation. They’ll look for support from others by distracting themselves with chat.
Not so for an autistic person. Because of the sensation of never-ending movement we will find eating, sleeping and socialising difficult. Lights will seem too bright, noises will scratch away at us, and thinking clearly will become progressively more difficult. We will fear the hamster wheel and want to run away. There will be an overwhelming and overriding instinct that everything must stop and we must obey our instincts: get away from the noises, away from the lights, away from the people, away from the feeling of going around and around and around. Of course society tells us we must get back on the hamster wheel – so many of us do, but each time we do, we feel more and more debilitated and less and less able to function. The best thing to do is block out every single other thing in life and concentrate on the one and only thing we are not allowed to stop doing: the wheel. From the outside we look moody and unsociable but physically capable. This is because in order to concentrate on one important thing we have suppressed ourselves.

In my opinion this is where autism looks like depression and where it might, indeed, eventually lead to depression. But I think the significant difference is that it is caused. And there’s an almost formulaic process and reaction: Fighting back tiredness plus coping with sensory stimuli plus dealing with repeated socialising equals burnout.

When we were trying to work out why I was sometimes not coping with seemingly simple or enjoyable activities, I had some assessments with the depression and anxiety clinic. What they discovered was my reactions to questions (repeated over a period of time), and my attitude to life and myself did not fit the expected reactions of a person who experiences depression. But they were very much the reaction (and to the extreme) of an anxious person. My fear responses are so enormous and my ability to cope with life relies on so much hard work from my adrenal system that I crash every now and then. In fact I have to crash. Autistic people have to stop. I mean just stop. It’s complicated to put into practice because of modern life and the way society works but it is in fact very simple. It’s learning that and accepting that which are so very, very difficult. If you don’t know that it’s autism, you reach for something or someone to blame and depression is often the nearest fit. Sadly it’s often common to blame partners, friends, jobs and whatever is going on in our life right now too. The immense sensation that something is broken, something is wrong and something desperately needs to change, and change quickly, can have us ending relationships, packing in jobs and breaking valuables in our endless quest for a fix. Often a massive meltdown -including screaming, slamming doors and insulting loved ones, can give us just that fix we need, and leaves us with nothing but the all-important solitude we perhaps didn’t realise we were craving. It’s not the best way to go about it though.

My frustration at having to crash, stop, give up, back out, cancel and reorganise makes me sad. Sad: yes. And sometimes despairing. But like a bitter pill (and let’s face it, better than any actual pill), it works.

So, importantly, the fix is about letting go and being allowed to stop everything and not trying to add more and more in an attempt to make things better. The useful mood-lifting, adrenalin-giving activities we might get prescribed by our friends with knowledge of depression might actually be piling more on our already over-full to-do list.

What we/you/society needs to say to someone with autism burnout out is ‘You don’t need to do anything. It’s okay to stop. It doesn’t matter.’

And then sit back (sometimes at a safe distance ;) ) and watch the steam escape!

When I felt the burnout last week, I did nothing for a day. Because we are all individuals, I can’t say what this period of “doing nothing” means for other aspies, but I do know that despite being called “doing nothing” it will be anything but. The brain will be very busy until it has offloaded. I wonder if it’s because we can’t kick out memories of recent events and conversations the way non-autistic people can or resign recent happenings to a deeper more distant part of our memory banks that this happens. We struggle to move on, to clear our thoughts and to wipe images from our visual memories. After a social event, for example, at which I may have performed very well and have enjoyed very much, I can still see the faces of people I have been talking to for hours or days afterwards. I can still hear the conversations, and certain spoken phrases will play out again and again in my brain. I can still see pictures on the walls, the expression someone made as we talked so that it’s like I’m still experiencing it. Perhaps this repeating means I need a longer period of processing and moving on than neuro-typical people. Maybe all autistics need a time for sitting still and letting our brain-wiring fizz out at as it crackles on at its own unique speed.

With this unique fizzing out delay, trying to continue to do things means we are adding more and more to the jumble and chaos already going on. And taking time alone is essential. Depending on the severity of the burnout and on the length of time for which someone has been coping, this time-out might be half an hour or a couple of days, but it essentially does not involve other people.

When I think of other people taking time off, I think of shopping trips at weekends, of drinks with friends on a Friday night, of meeting up with family on Sundays. I think of holidays in the sun with groups of friends and family, of restaurants, of airplanes, and all I feel is tired.

The only way for me to have time off is to de-clutter all the social activity I have already experienced and spend time alone. In the right situation I can often feel the release immediately. And the repair can happen quite quickly. This is one huge way in which I think this must differ from depression.

It should be so simple, shouldn’t it? I really hope with more awareness we can begin to make it more simple, more acceptable and more allowable because autistic people are misunderstood all the time. It’s okay to need our own thing, our own fix. The most common thing by far I’ve heard other Asperger’s women say recently is how difficult it is getting people to understand and how that has a knock-on effect on their own well-being, self-esteem and mental health. It’s not difficult once you’ve got it. It’s simply a case of accepting a difference.

With a brain constantly fizzing, we don’t get weekends off unless someone says ‘You don’t need to do anything. It’s okay to stop. It doesn’t matter.’

Not everyone will see the definition between austism burnout and depression I’m trying to make but if you can imagine a woman standing at the water’s edge, you can see how she’s not in the same situation as someone who is in the sea. She’s not in the water – she’s close – but she has her feet on the ground and she just needs to walk alone along the wet sand for a while.

Fight, flight – and the other thing

They say that fear and anxiety create the cortisol hormone that creates the fight or flight instinct. But as I sit here with my dry mouth, my thumping chest, my churning stomach, trembling limbs; with a propranolol tablet making it’s way down my gullet, a chamomile teabag brewing beside me and a clock telling me I should have been asleep three hours ago, I know there is something else:

Cortisol creates a third complex pattern of behaviour.
It’s like a dark, cold black hole, a whirlpool of never ending directionless movement. I am trapped inside a place where neither fight nor flight are an option. It’s like the holding room where those decisions are supposed to be taken but a decision is never made.
‘Fight or flight? Fight or flight? Fight or flight?’

This is purgatory.

I don’t have the prickles of a hedgehog and an ability to roll into a ball until danger has passed, I don’t have roots like a tree and the certainty that I can keep steady until the storms have ceased. Instead I feel like a leaf: trapped and at the mercy of the elements, whirling and hurtling around. Alone, loose and at the mercy of things beyond my control. Only I’m not a leaf – it’s worse because I have a brain and I’m not simply at the mercy of elements that come and go – I’m at the mercy of recurring cortisol that I can’t switch off.
Pump, pump, badum, whoosh, whoosh, pain, breathlessness, pump, pump, badum, whoosh, whoosh, kick in the head, kick in the guts, pump, pump, pump, round and round, on and on.
I try to train myself. I learn about all the ways to relax, to switch off, to concentrate on other things, to breathe deeply. I’ve read about every trick in the book. But this is an old dog, this cortisol inside me. You can’t teach it new tricks. It’s dangerous. And that’s what scares me. It scares me a lot.

I’ve felt what it does to me immediately I begin to feel anxious. I’ve felt what it does to me a day after feeling anxious. I’ve felt what it does to me a week after feeling anxious. I’ve read about cortisol and how it damages the body and the immune system. And while the short-term effects are unpleasant, I wonder what the longer-term effects have in store for me and what is already happening.

Just looking at the time now not knowing when this will stop but knowing I will be tired tomorrow is upsetting me and stoking the fires in my belly. I am pulsating. There’s a kicking feeling in my head. My fingers quiver above the keyboard. And yet, I am not fighting or fleeing, I am merely drowning in this rotating hollow, going round and round again and again in a dark helpless predicament. Being anxious about when this will stop gives it more potency.

The trouble with this fight or flight theory is that it suggests a certain amount of enabling, of action. Yes, in times of trouble and panic and extreme anxiety I can and I do either escape from or try to battle my way through a situation to find a way out, but we are not wild animals and fleeing and fighting are not the only options anymore.

I wish I could run away from this. I really do. I wish I could battle my way out of it too. Alternatively, I wish holding on and sitting it out like a storm with a feeling of reassurance was an option. But there’s nothing to hold onto. This place is the loneliest, darkest, most helpless hellhole on earth. There’s no running, no fighting, just swirling.
You can see, perhaps, why depression and anxiety are so closely linked.

When I look back at what I’ve had to avoid in life to curtail these attacks, much of it makes me shrug. I don’t mind too much. I’d rather feel well. But I can’t avoid being human and having emotions and opinions, and I can’t avoid being part of this world. When the fight or flight instinct does kick in it might be best for my health to flee or fight, but it’s not best for other people so I hold that swirling mass inside my belly and it gurgles and churns until it takes me with it. It is worse at night of course. It feels like it will kill me and then in the morning I find I am still alive. Tomorrow I will need to take a trip to a world in my head where life is simple and bad things never happen. I will have to shut things out and shut off the concern. It’s become a habit, this rehabilitation period.

People like to tell me “we’re all the same”, “we’re not so different”, “we all have the same needs”, “everyone feels like that”. I know some of it is well-meaning so I don’t know what to say. But I don’t think every feels the same. I know everyone doesn’t feel the same. And I wouldn’t wish this on anyone.

I think the propranolol is working. My chest is not hurting quite so much. That’s something I suppose.

I’ll try one more chamomile tea and hope that writing this down has helped.

The Freaks’ Guide to Feeling Normal*

(*where both “Freak” and “Normal” are overrated)

shutterstock_91734881When I was a schoolgirl living at home, I was the only girl in the world who lived in a house with a compost bin and whose house smelt of tealeaves and orange peel; the only girl who had 2 teachers for parents; the only girl whose clothes were washed in non-biological washing powder and hung to dry in the dining room (oh, the shame!); the only girl who wore her sister’s hand-me-downs (even though my sister was shorter than me); who lived on a hill and not in a normal street and didn’t have any friends close by; who didn’t go to Greece or Crete or Spain or Corfu or the Canary Islands or the South of France on holiday, and instead who had to visit cathedrals; whose parents didn’t have a car and who had to travel by foot or bike or bus or train; the only girl who was tall and skinny; the only girl who had a room so small there was nowhere to do my homework; the only girl who bit her nails; the only girl who was shy; the only girl who had more books than pets in her home (don’t get me started on the pain of no pets allowed…!); the only girl with no brothers; the only girl whose mother didn’t run around with the hoover/shopping/cooking/ironing/washing going all at once and instead took Open University courses; the only girl who learnt two musical instruments and sang in a choir; the only girl who didn’t have all the most up-to-date electrical gadgets (I think we were the last people in the world to get a TV remote).

It was hard to put my finger on which of those major, major differences was making me feel like a freak but it had to be at least one of them. I spent a lot of time identifying differences and imperfections. I really was very different and awkward and sticking out like a sore thumb. Nobody ever knew about my distress, no one knew about my struggle to fit. I don’t think I could have verbalised it even if anyone had asked me to try to share my feelings. But no one asked anyway. They simply singled me out for persecution every now and then or waggled a finger at me and wrongly accused me of carrying an attitude or behaviour I didn’t recognise in myself. I was obsessed with how people were reading me and how they seemed to be seeing something I wasn’t seeing. I continued to internalise my intense distress and suffered with stomach aches and patterns of fear. And I continued to be secretly furious with my parents for creating the situations that made me feel such a freak.

Maybe if I could pinpoint where my parents had gone wrong I could try to be more like other people and perhaps I would be fixed. Perhaps if I put on weight and grew my nails and tried to look more like other people it would help? When I got older I could get a car and pets and biological washing powder and the latest gadgets and go on holiday to Greece and vacuum a lot – maybe even vacuum a lot in Greece… I would be brave and cool (not too cool) and have a tumble drier and teabags. That might do it. And I could make sure my children didn’t have to suffer the same horrors as I did. At least they wouldn’t turn out like freaks. I had to find out which significant difference that was happening to me, nay: was imposed on me by others, was making me feel so wrong and not right and all faulty and not at all fitty-inny. It was worth changing my hair colour to see if that was the problem – so I did that a few times. Quite a few. For years. And years. And then I would regret that and go back to light brown.

I could observe normal people, throw off everything that might mark me out as different and I would become normal. Surely? And then and only then would people let me in and I would be happy because I would be just like everyone else and I would fit. All gloves and puzzle pieces.

Did it work?
Did it Betty Martin…

I was disappointed that shaking off all my childhood hangups hadn’t worked. I couldn’t identify such striking differences between me and other people anymore. But even the security people in the supermarkets knew I was up to something and followed me around. Maybe I needed smarter clothes? Or a confidant stride? I never stole a thing in my life. I was supremely honest! Why did they get me so wrong? What was it about me?

But I didn’t give up. I made lists and plans and projects and visualised me being normal and worked out how I could make that happen.

I had the odd hiccup. I had to bash my head on a wall a couple of times. I had to smash up the odd clock and the odd mobile phone, but I’m nothing if not optimistic and determined, and when I make up my mind I’m going to do something I am going to do it. I threw off the odd panic attack and sudden unexpected headaches and the weird desires to scream and hide in a tree, and followed the design for a good sociable woman I had created for myself based on observations and well-meaning advice. If I was superbly terrified about an evening out all I had to do was drink gin to shut my brain up and grin a lot. When you’re young and pretty that seems to work.

“Operation: Normal” was taking longer than expected though. Twenty years after leaving home it still hadn’t been achieved. But I wasn’t giving up. I’d managed to fake it quite a few times short-term and that was giving me hope.
Until, that is, my father died and I was exhausted by everything and fed up with life for not giving me back what I felt I deserved for all my effort. And people – people were supremely ungrateful when I knocked myself out for them! Couldn’t they see how bloody hard I was working for everyone and how it was killing me? Why did I still feel it was not enough?

I shrank away from life. I stayed home more. I spent a lot of time reaching into places I hadn’t reached into before: places that had nothing to do with trying to be normal or trying to fit or trying to be liked. I learnt to be more still and more thoughtful and I learnt to say “No.” I had been doing things I didn’t want to do for years – things I had hoped would make me more accepted, things that would stop people from singling me out as different, and I had failed. I began to stop caring. Well… caring quite so much. Everything that had been reliable and consistent in my life since childhood had crumbled and I had to build a new version of me. I didn’t have the energy to plan how that version of me would emerge so I cocooned and let the rebuild happen by instinct and natural progression, and waited until I was ready.

When she emerged she was cautious and hungry. She was older and wiser and rather life-weary but ready for new things. This new me wanted honesty and ached for a life free from lies and pretences. I knew now how short and painful life could be; how there was no point wasting time on silly pretences, on images and appearances. No, I didn’t yet know why I was still different and struggled so hard to fit but it was time to be honest about how I felt.

But I still felt guilty for not trying hard enough. I should have mastered normal just like everyone else had. Other people must be trying harder, right? They were all going around completely shattered, close to a breakdown and hiding it well perhaps.
Despite this guilt, I found that some of my calmest, most peaceful and most healthy periods were those when I stopped trying. I allowed myself to do things that gave me these feelings again. It felt wrong and abnormal to be enjoying solitude, to feel so lifted by hours alone writing, to get a buzz of sheer joy when a social engagement was cancelled, but I kept returning to that which made me feel safe and whole and alive and satisfied.

What a confusing place to be though. What was wrong with me? Didn’t I like people? Was I depressed? I didn’t feel depressed. And I’ve always been very interested in people and wanted to fix their pain and make everyone happy. How very strange that the very things we might use to describe an unhappy person were actually how I was happy, and the things that made other people happy made me thoroughly miserable and exhausted.

Being honest gradually began to help: I found out that other people don’t worry about stuff as much as I do. I found out that stuff I find really hard they find really easy. I found that when you start to open up, it’s like turning on a tap and stuff keeps coming out. You find yourself saying things you weren’t expecting to say and you didn’t know you felt. You find you had been hiding things even from yourself. (Well, maybe you hadn’t, but I had.) And maybe that was my biggest problem: the hiding. And the pretending.

Talking openly and honestly is like picking up a paintbrush and making a picture: things become more whole and real and far clearer. It can get a bit messy and you can see the wrong things until everything that’s emerging is out there. But the fuller the picture, the better you can see what the story is and the better you can understand. You’re less likely to judge, misunderstand or disapprove if you’re made to look at someone properly.

So I painted a picture of anxiety, of hard work striving for perfection, of social struggles, of unexplained illhealth, of a weird craving to hide and be alone – and finding immense pleasure – and not depression – from that, of a life of misunderstandings despite my best attempts to avoid them.

And the picture emerged as a person with Asperger’s Syndrome – and some pretty normal traits and feelings for a person with Asperger’s too.

I had found my normal.

It wasn’t the compost bins or the pets or the trains. It wasn’t a shortfall in my effort. It wasn’t depression or brown hair (it’s pretty grey now anyway). It was nothing I was doing wrong at all. All that was wrong was the pretending and the secrecy and the fear and the absence of place to call myself normal and be my normal.

It’s seven months now since my assessment and I still cry with joy and relief at the clearer picture of my own version of normal that has emerged. I wasn’t getting it wrong. It was just the way I was. I still struggle with people’s expectations of me but I know now that they are wrong and I’m clever enough to build up a picture of what I can expect from myself better than any of the people who don’t fit into my normal.

It’s helped me to think of myself as in a kind of minority. Someone recently described females with autism as “a minority within a minority” because we are so sparsely identified and understood. Sometimes we feel our differences more acutely than they can be observed and it is up to us to tell everyone else but it is up to everyone else to listen because when we are allowed to be our normal we are joyful.

These days our house smells of tea leaves and orange peel and I wash our clothes with non-biological detergent. I even hang washing in the dining room sometimes. My poor children. ;)

If you don’t know you have Aspergers/Autism you keep trying to identify what’s wrong/different and trying to put yourself right. It’s exhausting. Finding out what makes you feel like that helps you repair and move on. And it helps you deal with others’ expectations too. I wrote this to try to explain because there is so much untold pain in an autism head.

Light and Seeds

IMG_1451This afternoon we have to go and see our youngest daughter’s teacher for a parent-teacher mid-term meeting/review thing.

I’ve been a parent for nearly twenty years and had my children assessed and summed up, and I’ve listened to many different approaches and opinions about their educations and development, about their attitude and their effort over the years. It’s not been consistent and, like most parents, we’ve learnt from the experience and ended up making up our own minds about our children. We are grateful for any information, we appreciate any praise, we smile politely at any advice, and we take what we can from it and discard what we believe to be misplaced or misjudged. We can see how we are not all always seeing the same child when we talk about one of them. In the past I’ve heard a couple of adjectives applied to my children by teachers that have really surprised me and which I’ve known to be false.


But this is the first time I will go to a parent-teacher meeting knowing that I have Asperger’s and knowing that my child may well have inherited those particular genes. That knowledge throws a whole other very significant ingredient into the mix that is our child – and perhaps our other children.


My children will carry my autistic genes. Of that I am sure. Any or all of them or none of them may have their own version of autism. They may simply carry some genes. Without formal testing I may never be one hundred percent sure about any of them. For now, all I have is a big bag of new knowledge and my powers of observation, and one heck of a lot of information under my belt after an incredible amount of delving, reading and paying attention to the world of autism. So far our middle child (our son who is 17) doesn’t seem to have my anxiety or my fears, but both our daughters have shown signs of inheriting my anxiety and some of my sensory processing difficulties and they have all three thrown up some interesting questions about the ease with which they can be squeezed through the narrow tube that is conventional education. It’s too late for me to discuss our elder daughter’s education with anyone now that she is nearly 20 years old – all I can do there is let her know that she carries my genes and has a chance of possessing many of my traits (which are not all bad, I’d like to point out!) but it is not too late to consider what part (if any) autism might be playing in our nine-year-old’s education and childhood.


What I’m wrangling with today is just how far that considering goes, and with whom to consider it. Do I wait until a problem becomes too great, until some sort of crisis occurs? Do I keep quiet and hope she “gets away with it”, “pretends to be normal” and hope she learns to shrug things off? Do I assume her father’s non-autistic genes have watered down mine sufficiently for her to be pretty “normally-wired”? Will she muddle through until fifteen until suddenly one day a teacher calls her “difficult” or “impertinent” or another child bullies her and by which time it may be too late to discuss Asperger’s and she may hate me for trying to? I remember how I felt about being told I needed glasses at fifteen. I really don’t think I would have coped with being told I had Asperger’s at that age. I’m sure I would have rejected it and hated anyone who tried to discuss it.


From my experience, nine is about the age difficulties begin to trickle in for a high-functioning autistic/ Asperger’s child, and it might be when differences start to be less forgiven by other children and even by teachers. I also know that outsiders can often be quicker than a family to spot differences – after all we are used to our own children. It’s also about the age we notice differences in ourselves, and that can cause us to crave to fit in and therefore become quite secretive about our worries. Fitting in and not being noticed are extremely stressful and hard work and I worry about the long-term effects not just of that fitting in but also of the repeatedly being misunderstood. My gut instinct is that my child has enough of my traits for her to find certain areas of life a bit more of a struggle than other children and that this might become distressing in her teens but that she hides them well now and will never have serious enough problems for teachers to think to consider autism without knowing it is a possibility. I also feel that if it is going to be discussed, sooner is better.


So today I am planning to plant a seed. I intend to merely mention to our youngest daughter’s teacher that I have Asperger’s. I’m actually quite scared because I hate talking about myself.

I want, while our daughter is at a school small enough and far enough away from the stresses of more serious formal learning in the future, for her school to know about the genes that she comes from and be ready for any challenges or fears she may face. I can’t guarantee their knowledge of autism will be vast enough to know what they are looking for. I can’t guarantee it will mean as much to them as it does to me. I can’t guarantee they will use Asperger’s as a potential lens to view any troubles or concerns (if indeed there are any). And I can’t guarantee that I will ever get her a diagnosis if one is needed in the future. But a huge wave of meaning came over my life with my own explanations of my difficulties and it would be unfair of me to deny my children that opportunity. And not only my own children but the people who are in a position to provide support. Maybe they’ve already struggled to fathom my child and this will throw new light on their understanding of her.


Part of the Furniture

Two old chairs sat side-by-side facing the window. Arms worn, seats sagging, covers bleached by sunlight.

‘We used to talk. We used to look at one another. I remember when you used to notice me. You used to ask me me how I was. You said I was beautiful. Don’t you remember? You never talk to me anymore,’ said one chair to the other.

‘No. Not us. We never did. That was the humans,’ said the other chair. ‘We’re just chairs you daft bugger.’

‘Why don’t they then?’

‘Why don’t they what?’

‘The humans. Why don’t they talk, why don’t they look at one another? Why don’t they say nice things anymore? Don’t they care?’

‘I think they think they are chairs too.’

A Chance to Shine

My modest return to Friday Flash. It seems I haven’t written and shared a flash fiction since December 2012!

This isn’t the first time I’ve given a voice to an inanimate object. A couple of years ago I wrote a very short fiction about a pair of shoes with their own opinions…

An apple from the garden, sat atop the wooden kitchen table, all perfectly imperfect.
Alone in the half-light from the cookerhood lamps, it proudly glowed: its contours more strongly rounded by its halo, the two small, black bruises and the – as yet negliable – newly forming wrinkles hidden by the shadows.

‘Paint me,’ it whispered. ‘I’m still beautiful. Paint me before I die.’

A woman entered the room, switched on a single light bulb, remembered the apple she had rescued from the ground in the morning, and smiled now at how its middle seemed noble and self-possessed like a robin’s. She saw the asymmetrical left-lean of the stalk, the elliptical shadow pool, and the way the reflection from the light bulb beamed out midway where the red and yellow colouring met. There was something really palatable – comforting almost – about the form of an apple.

She remembered drawing and painting apples in school. Hadn’t she been quite good at still life? For the briefest moment she wondered if she would like to sit and draw this apple now. But it was late, and anyway what would it achieve? She didn’t have time for unproductive things like drawing and painting.

‘Paint me. I’m dying.’

‘Where’s Cézanne when you need him?’ the woman asked the apple, pressing her lips together in compunction, as she turned out the lights, shut the door and followed the stairs to bed.

The forlorn apple’s previously tight, satiny skin turned sticky and soft in the dark, warm kitchen. It had tried its best but it hadn’t managed to inspire her.

Maybe the stories it had heard on the tree about humans being creative and appreciating nature the way no other animal could hadn’t been true after all.

Backward Forward Thinking

shutterstock_135498428Somewhere out there, in a parallel universe, there are humans who knew that dragging coal and oil out of the earth was stupid, dangerous, dirty and unsustainable so they left it there and instead they developed products and technologies from safe, clean, sustainable sources, fought the NYMBYs and the luddites centuries ago, harnessed, wind, wave and solar power and will continue to thrive and renew for eons – long after we have fried.

It’s not too late to join them as a sort of sickly, recuperating, penitent relative with previous self-destructive addictions, trying to clean up our act,  but it looks like we’re not even going to bother because we still haven’t admitted we’re addicted and we’re in the wrong.

Well done to the wise inhabitants of that other earth in that parallel universe. I wish I and my descendants could join you.

Peace, please: this Aspie angst.

An open request.
I have Asperger’s, I have anxiety and I have acute hearing. If you sit in your van, behind our garden hedge, in the lane that only leads to next door – and which I only expect to see my neighbours using – having a loud conversation, just yards from my garden door, it feels as if you are in my garden. I can hear what you are saying and I feel I am invaded and not able to have my own conversations, my own thoughts, my own peace. You are not meant to be in my garden idyll – in fact you destroy my garden idyll.
I am not paranoid or stupid, I don’t feel threatened per say, I just don’t know you or why you are there – you are too close for comfort and I need you out of my zone of peace.

My anxiety will rise, I will pace and I will be unable to function properly.

I will start vocalising my concerns more and more loudly until you go away.

This is how it is.

I don’t ask for much. Please give me my peace.

No more Asperger’s stereotypes! Please!

Recently Asperger’s has become a bit trendy in books, TV and films, and I’m seeing a lot of the same ideas about behaviours and traits rolled out, and more stereotypes than you can shake a stick at squeezed and squoshed inside the poor characters, and the individuality and very humanness of aspies insulted and belittled.

In the last few days and weeks, I’ve had a run of simply being a human being and not having to think too deeply about my brain-wiring, so I’m not really in the mood for confronting the “no empathy”, “painfully honest” shit that’s been badly wallpapered onto everyone with Asperger’s – like we’re a bunch of weird, abnormal clones and everyone else is somehow so much more tactful and thoughtful.


It is nasty, unfair and untrue, and it breaks my heart every time I’m exposed to said shit. Everyone else is not much more tactful and thoughtful and going around being all nice all the time. We are not two separate species: one with empathy and one without. It simply is not like that. 

I think about other people ALL THE TIME. I think about how my actions impact on others ALL THE TIME. I care deeply about people and watch them carefully and read them intently to gauge their feelings. Just like every other fucker on the planet I can let tactless things slip out occasionally – and when I do that I feel bad. 

Yes, it’s true I don’t see the point in lying when the truth is important. But, no, it’s not true I speak my mind all the time and unnecessarily offend people regularly. Yes, it’s true I can have trouble deciphering what people need from me when I feel their behaviour is coded. But this is cognitive empathy and not the same as emotional empathy and it does not mean I am unable to guess, to judge or to imagine how other people are feeling or to feel very deeply for what they are going through.  Nor does it mean I am unable to show sympathy, empathy, support or help work on solutions for other people. I understand that everyone is different and thinks differently and responds differently to situations; that people learn differently and need different approaches to things they are tackling, struggling with or dealing with, and I understand that might very well be different from things that might work for me.

Speaking for myself, the greatest problem I have is the strange codes and behaviours that exist in the neurotypical (non-Aspie) world, whereby people don’t say what they mean and don’t ask for what they want: they say things they don’t mean, they agree to do things they don’t want to do, they leave things out, and they approach things from an angle that is unfamiliar to me. Importantly, I find neurotypical timing to be slightly different from my own and I believe this is due to some challenges in processing more than one thing at a time. This timing leads me to be off cue, slightly disordered or slow in the behaviour others may be expecting, and people who have spent their whole lives shepherded by neurotypical behaviours (even other aspies) don’t see what they are expecting so make a immediate judgement that there is something lacking.

Neurotypical people, it would seem, on the whole are more likely to pretend. They are more likely to be two-faced. They are incredibly likely to read an autistic person wrongly and make an unfair or incorrect judgement. They are not better at empathy. 

But this post isn’t about widening the gap that’s been created to an extent by common misperceptions, it’s about trying to narrow it so what I want to say is this:
When you find yourself believing someone has no empathy, ask yourself how deeply your own empathy is running to have reached that conclusion. 

Tea and pills

IMG_2599I’m a real advocate of allowing people to be honest about the negative stuff in their lives. I’m a believer in recognising the balance between wonderful and crappy.
Unfortunately I often pick up a strong hint from people that, unless one’s life is truly truly monumentally crappy, we’re supposed to think positively even when we don’t feel like it and bound around joyfully saying only nice things and never complaining.
‘But look at those people worse off than ourselves who never complain!’

Bugger off.

Even when I’m feeling low, I can list the good stuff! I know what it is! I don’t need annoyingly cheerful people prodding me with their happy finger, or miserable bastards telling me I don’t have the right to complain.

I’m massively, massively exhausted today. And I have had to take a combination of painkillers so I can get through some bad period pains. And I fully intend to not be joyful or to waste any energy pretending otherwise like some irritating fluffball of false cheerfulness. I will still be naturally delighted by a butterfly or a new flower or my children’s senses of humour.

I have pulled out all the stops for my family recently. I’m not complaining about that. I have no regrets. But, despite a certainty that could I do it all again I would, I can’t hide the exhaustion. I can’t pretend it’s not there. I suppose you might say I’ve refused to “think Aspie” in the last couple of days or think about the needs that involves. And now Aspie and hormones are both here to remind me I can’t ignore either for long. All I want to do is curl up somewhere dark and quiet for a day and sleep and think and empty my brain of all the recent interactions and images that are playing over and over. (And maybe have someone bring me tea and Voltarol and chocolate occasionally…) But I can’t because I have to be Alpha Dog, Alpha Bitch and chief doer of the everythings for 2 weeks now to get us through the rest of the holiday. As much as I can organise timetables for our shop and organise time for the family and organise times a journey will take us and organise and organise and organise… I can’t organise exhaustion and I can’t organise energy. These days just happen to me.

I know that many people see time at home with the kids as time off but I see it as my job – particularly when I’m the only parent here because the only time I get time off is when my husband is contributing and easing the constant to-do list, and “what does everyone need from me?” tune that plays forever in my head – and it has to be him rather than anyone else because our responsibilities are joint so it’s not help – it’s our lives, and he’s the only one I don’t have to explain to. (To be honest, I’ve always failed to see how my life of washing, washing up, preparing meals, tidying, cleaning, vacuuming, wiping poo off toilets, restocking the fridge, picking up dog hair, tripping over miscellaneous gubbins, repeatedly tidying the kitchen, stopping regulalry to say ‘Oi! Pick that up’, ‘Stop that!’, ‘Clean that up!’ ‘Wash your hands’, desperately trying to find time to pay bills, answer emails, do the wages, get outside and grow and pick vegetables, walk the dog, drink cold tea, never getting an authorised break, working through period pains, feeling guilty if I sit down, and never getting paid for any of it for twenty years, is like a holiday to some people. I’m clearly doing it wrong. Or maybe it’s the not getting paid bit…? )

Brains that never switch off need calming by reducing the stimuli sometimes – otherwise there’s no such thing as time off. I’ve pushed other people’s needs to the front of my brain for 20 years – 25, if you count the years I forced myself to socialise as much as I thought I should, and I think the not emptying often enough has finally worn me out. Some days the only thing that anyone can do for me is leave me alone ( – it’s taken 44 years and an Asperger’s assessment to learn to say that and it still feels totally evil).

I don’t need advice or solutions, I just need to grump. I actually don’t think there is a solution.
I know the best thing I can do today is write things down instead of letting them whirl in my brain, find something nice for our youngest to do, so I can ease the constant guilt, and aim for a rest sometime this afternoon by suggesting a DVD later. It won’t solve anything but it might keep things from getting any worse.

I don’t want to not have what I have, I don’t want to not have my children. I don’t even want someone else offering me anything. Dealing with communicating or organising with another person when I feel like this makes my head spin and exhausts me further. I just need to complain before I get up off my arse and carry on!

I am wading through treacle today but the treacle-wading boots fit only me. If you want to wave and offer a supportive glance as you run past me wading at 2 metres per hour then please do but don’t offer to discuss how I might do this any better/faster/more efficiently, and don’t ask me to explain why I should dare to suppose that my apparently charmed life is so difficult sometimes.
It just is, Dear Reader. It just is.

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.

Simple Skin Care for Aspies

Everyone has a skin;
a protective layer to prevent and repel.

Some skins are thick and watertight,
impervious and resilient.

But an autism skin is thin and raw.
It stings, it burns, it prickles and it bleeds.

One small scratch is all it takes for days of pain.
And over the years, the many scars struggle to fade.

If you prick me do I not bleed…?

…And bleed and bleed and bleed and bleed and bleed…?

Please don’t prick me.

I wrote this because I see how nonautistic people struggle to comprehend our reactions and our pain. No one’s saying autism has the monopoly on pain and sensitivity, but an autistic reaction is immediate and often overpowering. We take everything in, we take it to heart, we find it hard to process and hard to recover. Everyone deserves a chance, sensitivity and thoughtfulness, but an autistic person needs extra protection always because our defences are thin and we are too easily shaken.

It can often feel like poking a hornet’s nest when you argue with an aspie, and instead of stopping, people tend to continue jabbing and questioning, ‘Why are you behaving like this?’ ‘Behave like me.’ ‘Get over it.’ ‘Stop it.’
When you reach this situation of desperation and frustration, it means you’re getting us wrong: you’re provoking us.
It’s not the right thing to tell us we’re behaving badly because that’s not how we see it. We see you behaving badly. Eventually, after some hard work, we reach a stage where we contort our thinking to how we think you want us to think and react but it’s tiring and we feel sad that yet again we moved our world for your sake. But you don’t see that you only remember us as reactionary.
Meanwhile, you move on and we continue hurting.

It’s not easy seeing social rules and interaction through a different lens but we’ve had a jolly good go at it over the years. Remember that and think about seeing it our way sometimes.

Don’t be sorry. And don’t try to cure me

What I don’t want the world thinking is that we all need fixing, and that people like me should never have been like me.

Quite a few times I’ve read that those with autism feel like an alien in the company of neuro-typical people. Like many other Aspies, I often find myself feeling not so much “wrong in the world” as “in the wrong world”. I feel perfectly at home and not wrong at all when in my world. And yet we are still viewed, all too often, as something that has gone wrong – as if something happened that shouldn’t.

This week I have seen a new round of Things That “Cause” Autism:
Male hormones

Milk (?!)
Yup: Milk…

Previously in the firing line have been vaccinations, herbicides and mercury – to name but a few. You’ll note that a lot of the above could be categorised neatly in the “blame the parents but most especially blame the mother” camp. (I suspect you could google almost anything and see it causes autism.)

But… as milk comes from females, male hormones come from men, mercury is a planet, vaccinations come from needles, herbicides kill weeds, and stress comes from homework, I’m starting to form a picture of the true autism cause. And my scientific research has produced some helpful findings…

Kids: if your transgender, alien, needlework teacher comes into school wearing a dead dandelion and gives you homework….

RUN!!!!! You might catch autism.

Fact… ish.

Seriously though: most people don’t want autism, it would seem. They don’t want their children to have it either. But mostly it looks like it is the people who don’t have it who fear it the most – in the same way people fear homosexuality or immigration, I suppose. It’s fear that leads to scaremongering and scape-goating. We become obsessed with blame and avoidance. And while I appreciate that many of the more extreme traits of autism such as the more defined sensory processing problems and considerable communication problems in some, make autism an often painful hell for individuals and their families, it isn’t like that all the time, and I am concerned about treating autism as a disease or an illness that we must find a cause and a cure for. It is neither a disease nor an illness: it is a way of being – just like being gay or being left-handed, and I’m worried the cause and cure obsession gets in the way of acceptance and understanding.

I think autism is simply passed down in the genes in the same way left-handedness is. (Remember how that was seen as wrong and needed fixing? Brain scans prove the brain is arranged differently. It shouldn’t be seen as a fault.) My father was left-handed. My younger sister is left-handed. I am not left-handed, but I expect I carry the gene. When two people carrying a gene get together the likelihood of a child presenting with something is greater. I was bound to have blue eyes, for example: both my parents had blue eyes. I think both my parents had autistic traits too. But they were undiagnosed and most people would not have suspected it.

I can’t speak for all people with autism and their families because some of my traits are mild and, being on the high-functioning/Asperger’s side, some don’t even exist. And I can’t speak for all the children struggling to fit in right now who haven’t yet learned to love themselves and feel glad they found joy in their own uniqueness and their own way of appreciating life. Many will, though, and I wish I could show them the future.

I can’t even speak for all the people with high-functioning autism and Asperger’s – because, just like everyone else, we are all individuals and we all struggle and cope differently with different situations. But what I don’t want the world thinking is that we all need fixing, and that people like me should never have been like me.

Here’s the reaction from someone recently when told by my husband that I have Asperger’s: ‘I’m sorry to hear that.’
Why is he sorry?
Well he’s sorry because he sees it as a problem. And unfortunately being made to feel like a problem is a massive cause of stress for us.

You don’t have to have autism to struggle or cause other people problems

I, incidentally, believe I am not a problem. In fact know I am not. I am a loving wife and mother. I work – albeit from home – and contribute to the running of the business. I have a huge, huge heart, I cook, I clean, I garden, I grow food for my family. I made sure I read to all three of my children every night until they were old enough to read to me (and even then I still read to them when they wanted me too), I gave them books, paper, art materials, healthy food, plenty of outdoors play. I was their main carer for many years. I keep them warm and let them be themselves. I assess every situation every day in life and decide what is needed of me. I fill in the gaps where my husband has short-comings and he fills in the gaps where I have short-comings. I believe we compliment each other. I am musical, creative and imaginative. I can write, play the piano and play the flute. In the last few years I have completed 13 Open University modules and gained a degree, a literature and writing diploma, published a book, taught myself to grow things and use a camera. I believe a lot of what I have achieved is partly because of being an Aspie, and partly despite it. The things that make me uncomfortable I try to avoid, and I try not to let others be too affected by my behaviour. Mostly this has become more successful since accepting Apserger’s and explaining myself to my family. When I do have days when I struggle, I can see how trying to place myself in the outside world is the problem. In the smaller world that I/we have developed at home, I am not a problem. But you don’t have to have autism to struggle or cause other people problems. I often think neuro-typical people cause autistic people as many problems – if not more – than we cause them, because we’ve had to try to understand their world.

I have worked hard on figuring out why for years I did feel like I was a problem and I have found it’s only to do with other people and a lack of understanding that makes me a problem. So, in essence, it isn’t all about me.

It breaks my heart that people think people like me are like me because something went wrong.

Read my blog, look at my photos, look at my garden, my children, my life: tell me what’s so very wrong with me? If you took away my autism, sure, things wouldn’t bother me so much, but surely we need people in our world who are deeply bothered by things and intent on solving and resolving things. Cure ignorance not me.

And please, please, please don’t be sorry.

An Open Letter: Dear Family and Friends, Why I need to live as an Aspergirl (or a woman with Asperger’s Syndrome)

Dear Family and Friends,

Why I need to live as an Aspergirl (or a woman with Asperger’s Syndrome)

Lately you may have noticed what might seem to be an inordinate amount of self-indulgent navel-gazing from me. However I prefer to call it mandatory self-reflective self-awareness after a lifetime of avoiding dealing with myself and a feeling that I have a confused identity.

It’s only three months since the rather swift realisation that I must be on the autistic spectrum, and only 6 weeks since a psychologist agreed with me. And this processing and resetting of who I thought I was has brought enormous highs and lows (the lows mostly come in the form of unhappy memories), plus a tonne of necessary thinking. At 44-years-old, it’s an enormous thing to take in, and it can’t be done overnight or even in a few weeks or months.

I am re-evaluating and examining my past, present and future, and am currently completely wrapped up in a new way of thinking about myself and the world around me. I realise now how different other people are from me in the way they handle life and emotions. Although I feel different about my place in the world and am readjusting, I’m not so completely different in my head or my actions because I’ve always had autism, so I’m still me, but I can better see why I find other people so perplexing and always have. I suppose, in a way, I am readjusting other people just as much as I’m readjusting myself.

Mostly I’m very happy and relieved about the diagnosis, but I am still finding life difficult and still suffer with anxiety and still swing back into trying to cope like a “neuro-typical” person (that’s the non-autistic brains among you). Recently though, I’m beginning to use the Asperger’s like a gentle hand on the shoulder to say ‘You are pushing yourself too hard. You’re heading for a meltdown. You really don’t need to hate yourself. It’s okay to say you can’t do this.’ And I find the most beautiful peaceful pleasure from finding myself in the middle of doing something alone for hours and knowing now that that’s okay.

But it’s still just the beginning and I’m still in a bit of a mess. I don’t know how long before the dust settles and I get to feel I am successfully rebuilding my life. Currently I feel like I lay 10 bricks and then knock 8 over, and I’m having some fairly distressing days. And I can’t shake the guilt.

The guilt is enormous.

You see I can’t get over the feeling that my actions and needs affect you all and you will never quite understand or accept it. Knowing that other people have a different brain wiring from mine means I’ve been misreading many of you – and you me – for 44 years. And that will never stop. And yesterday that feeling made me want to cry and cry and cry.

I don’t think people with autism ever completely grow up. In many ways this is good and keeps a sense of wonderment and excitement and a thirst for new knowledge surging through us daily, but in other ways it makes us vulnerable, easily distressed and regularly disappointed with the world.

I need you all to know that I am not being selfish at the moment and I don’t feel angry or depressed or unsociable or uncaring but I do feel busy. I feel very busy inside. I can’t remember things you’ve told me, I can’t always remember to say the right thing at the right time. I can’t read all your emails, I can’t remember dates, I can’t take in information and I can’t hold a decent conversation. For years I made motherhood and family my life’s project and pushed myself to perform whatever role was necessary for each individual person in my life. It meant that I did very little else – because for a person with Asperger’s to get things right we have to focus on one thing at a time. Looking back to when the children were young, I really threw myself into “Project Parent” and failed to understand how anyone could possibly be doing anything else.

So now, I am taking some all-important time to think about me so that I can make more sense of things and get those bricks to stay in place. Breaking out of this readjustment phase to go back to pretending to be normal seems to be impossible. It’s as if I need to back away from everything and everyone for a while.

What I ask of you is patience and your permission for me to be quiet. And please let me continue to be self-reflective a little while longer.

When I find my bricks are staying in place more often, and I feel stronger, I think I will be less obsessed with Asperger’s and autism and how it fits me, and I will just live it. And live it I will. I think if you’re autistic and you’re not living as an autistic person in your head and in your understanding of yourself – either because you’re completely unaware, in denial or wish to pretend to be normal, then you’re not giving yourself and those around you the opportunity to regularly remind yourself that people don’t think or react the same way you do and not just in an “everyone’s different” kind of way but in an “autism is different” kind of way.

Right now I think that going over what I do and how I react on a daily – sometimes hourly – basis is important and helpful. How I am perceived by others has always been important to me and always will be. I care very much if I think people have got me wrong – and unfortunately I feel this has happened all throughout my life. Going back in time and revisiting past events, conversations and relationships has been difficult and painful but instead of leaving dirty old bandages over festering wounds, I want to open them up, clean them and let them heal. I’m surprising myself by feeling quite forgiving of people I’ve hated or felt hurt by for years, because I can see now how they didn’t understand and how easy it was for them to get me wrong.

And now a request for the future: I wish you could understand the difficulties and the exhaustion, and not take my actions at face value. I wish you could know that my silences are nothing personal. I wish you could look through the lens of autism and see that an expression on my face, a tone in my voice, an action, a silence, a disappearance are not what you think they are. But if you have a neurotypical brain that’s not possible and you see the world through that lens and interpret things differently from me. So instead please can I ask you to know that you simply don’t understand (I know some great books if you do want to understand!), and that when you think bad of me to think again because I’ve been fighting every day to fit and not get it wrong and to do what I think you want of me, but because of my brain wiring I don’t understand you either and my version of right might be your version of wrong. For the near future I need space and time to deal with what has happened and is happening and I can’t guarantee anyone anything. That’s just how it has to be.

Change is massive and distressing for people with autism. In recent years I’ve had to attempt to deal with my family splintering and reducing through sisters moving away and my father and father-in-law dying, and my fragile sense of identity being smashed. Creating a new sense of identity is slow for me and I’m finding I need extra time alone to process at my extra slow rate.

Ironically, as an autistic person, even though I may back away, I need you all more than you will ever know. Because having a small number of people I can trust and feel safe with is everything to me. And when I love people I really, really love them. All of my emotions are off the scale. I’m just sorry I can’t always show them in the typical/expected ways.

Please know I am doing my best, even when it doesn’t look like it. And in my head I am working hard all the time.

Deepest, fondest love,


Zoom in

Often I will not mind being the one who regularly sits back or stands in a corner and lets others do all the talking and make all the noise. The quiet observation means I often see things most other people do not, and I enjoy having “busy” eyes and noticing things. And I’m usually so exhausted by the emotions of a stressful world that I am glad I’m not forced to fill the gaps with words I haven’t had time to be sure I want to say.

But sometimes I know I could have said so much more and so much better and the feeling of things unsaid or things unchallenged hangs in the air for years and years, and I find myself haunted by the ghosts of dead conversations and the phantoms of lost opportunity. I will always have a heart heavy with the untrue stuff I’ve let people think.

Despite this regular yearning to go back in time, to put things straight, to explain myself or challenge some assumptions, I still wouldn’t swap what I’ve got.
I wouldn’t want to be confident, outgoing and able to say exactly what I’m feeling and say it well in exchange for my quiet reflection and my eye for detail.

Today, when I was out walking the dog, I was surrounded by fields of buttercups and dandelions against a rich blue sky. The dandelions were mostly turned to seed heads ready for the next gusts of wind, and the buttercups gleamed with such a saponaceous yellow I realised how they got their name. As I walked along, one dandelion stood out as taller and straighter than the others; its seed head lifted proudly above its neighbours (that’s not it in the picture. I didn’t have my camera with me so I had to find one in the garden when I got home). But when I passed it I realised it was leaning to the right and was in fact quite crooked. It was just that one angle that had made it look straight. It wasn’t better or more special than any of the others at all but you’d be forgiven for being fooled by just one glance. (Yes, as I write this, I am thinking of people I’ve met who can fool others!)

I believe the autistic brain has an eye for detail and gift for noticing unusual things. We don’t see a whole view but the things that make it up. I saw the first swallow in my peripheral vision a few weeks ago, and so we were ready for them and looking up at the sky when they all flew by. Like a camera that zooms in and out, we zoom in and see the bits and bobs of life, the exquisite elements of the natural world and the nitty gritty reality of weeds and muck in a beautiful view. I wrote recently how an eye for detail can be a burden sometimes – especially when you apply that detailed observation to yourself or jobs that need doing, but on the whole it is an exciting and fun way to be.

PS I wrote a Flash Fiction called Zoom Out three years ago, so it’s about time I wrote something called Zoom in

Just The Way You Are

IMG_1540Something interesting has been happening to me over the last few weeks.

I’m gradually stopping fighting who I am.

It’s not an overnight success and I still have wobbles – and of course I always will, but the anxiety, perfectionism and regular sense of failure are not being quite so very tough on me recently.

It’s all since my Asperger’s diagnosis and the slow realisation that almost every part of my life was a fight. I knew already that socialising and performing fairly normal everyday stuff had been especially tiring and stressful for me, and the gradual acceptance of my autistic brain since February had been helping see why and what I’d been dealing with. But there’s a whole host of other stuff that I’m seeing.

I’ve been stressing, worrying and feeling I’m failing all my life about who I am on every level – from the hair on the top of my head, right down to my underwear; from dirty windows, to whether or not I’ve earned the right for any self-fulfilment. There’s always been a feeling of need for drive, performance, achievement and a packed day – whether or not there might be any reason for such performance or indeed any enjoyment involved. And because of this I have lived a whole life of being pretty much disappointed with myself all the time. And it had been getting worse as I got older.

I’ve written this before elsewhere but there came a point in my life when I was literally looking at the dirty windows in our house and not seeing the beautiful view. In fact the minute we moved into the house we used to have in the countryside I stopped appreciating it and began my downward spiral of looking for negatives. My eye for detail picked out endless jobs, minute imperfections became enormous tasks and I could never relax. I’ve always had unwritten rules and lists in my head about what constitutes appropriate actions, behaviours, words, appearances and lifestyle choices. But I was never sure I was getting it right so I had to try everything. And I spent every day wondering just what it was everybody wanted from me and finding the different versions I came up with didn’t fit together. In the back of my head there was always this feeling that I would get found out. For quite what? I’m not sure… And so I had to keep looking to see what it was I should do next to achieve ultimate appropriateness. In hindsight I could say I was trying to fit in: to hide my differences but if I go back in time and think about what my motives were I’m not sure. The truth is I’ve been wearing myself down mentally and physically with the worry and effort it takes to try – and fail – to turn one living thing into another. And it can’t be done. The important message here is it shouldn’t be done. It can be faked but it’s just a front. The actuality of me is me, not something else. It’s not as obvious as it sounds when you know just what having a differently wired brain entails. The metamorphosing is dangerous and painful.

I’ve always been autistic but have only become truly aware of it, by virtue of a psychologist’s conclusion, for a month now. In the last four weeks I’ve allowed myself to feel tired and not tried to fight it or tell myself I’m not allowed to feel tired. I’ve let Richard ask our son to pick our youngest daughter up from school and not cried that I should do it and we shouldn’t be asking our son. I can see there’s no point in sobbing and blubbering through things that aren’t necessary or can be rearranged just so I may strive for an image of acceptability rather than a manageable reality. My actions are (or should be) based on my abilities and strengths not received perceptions of behaviour. And, yes, everyone knows this is fine if you’re someone who just wants to dress a bit differently or you have diverse tastes (or whatever) but it’s difficult if you feel different through and through – in not just a couple of ways but in many, many significant ways. Ways that often stand out as perhaps not pulling your weight or not being a normal parent. And it has been difficult, painfully difficult, to be always trying to push myself to not stand out.
Pushing oneself through a mangle of everyone else’s ordinary every day for years takes its toll. It makes you feel ill and you end up with a myriad of aches and pains and unexplained health niggles.
And it gets harder into middle age, in my opinion, to do it without the safety net opportunity to say ‘Look. I have Asperger’s/autism. I can’t do that/I need a break.’ – even if it’s just to yourself.

So it sounds like I’m doing less and lying in bed, more, right? Well, no. Not at all. Quite the opposite. That crazy perfectionist drive and quest for a fulfilled day and completed tasks is still there but the calming touch of new realisation adds a sprinkling of delegation and manageability to everything. Reading about brain wiring helps me to see patterns and make predictions. If I do A there’s a good chance I may get outcome B but there’s a possibility D will rear its ugly head and E might have to be implemented. Or if I do W, based on the way I’m feeling today there’s a good chance not only X but also Y and Z – and we all know that’s a troublesome combination! So let’s just C, shall we? ;)

It’s not enough that I thought I knew myself. I needed to know my condition and why it was driving me to be so damned detail-orientated and why it was telling me to panic about everything until I had stomach pains so I could see that pattern of reaction that I was never able to predict before. Because why would you suddenly feel like crying and want to go home? Believe it or not I never really expected or predicted most of my wobblies (I now know them as meltdowns). Why would I? It’s not normal. So it can’t happen.
Only it can happen if you have Asperger’s.
Ah. I get it now.

So, picture this.
After reading about how autism and Asperger’s affects other people and the minutiae of their daily lives, how their drive and anxiety is affected by their eye for detail and their perfectionism, I sit back and think. I absorb yet more information about how a mind put together in a different way is bound to make different observations, and then I get up and I plod on with my daily life noting how I am going about my everyday tasks in a perfectionist way. I pretty much do everything I did before and days get back to a kind of normal (our normal). But slowly, slowly I begin to wonder what I want autism to control, what I have to let autism control and what I don’t have to let autism to control. And of course I wonder what probably has nothing to do with autism whatsoever.

I’ve got a silly fringe (that’s “bangs” if you’re American – which is totally funny because bangs means having sex…). It looks like a wave. I have a cowlick one side and it swishes over in a silly big curve. When I was 4 or 5 I was so fed up of looking at my fringe, I cut it off. Yes, it looked even more silly after that. These days I can spend ages blow-drying it down flat and faffing with the rest of my hair to make it look okay enough for me to not completely hate it and be distracted by it all day. Likewise with my face: I stand really close to the mirror every morning and pinpoint every imperfection and cover every inch of my face in makeup. It takes a big chunk of my time in the morning. Yes, lots of women are like that – it’s called conditioning, but I’m using it as an example, so bear with me… When I take washing up to the kitchen sink, I will notice the windows aren’t perfectly clean, I will notice the sink isn’t perfectly clean. When I walk past the bathroom I will notice the bathroom isn’t perfectly clean, I will notice every smell that hangs in the air. If I hold a finger to my mouth in thought I will notice my nail is jagged and I will chew at it until it’s short and painful. My point is: I notice too much. I worry too much, I faff too much, and I’m never able to narrow it down to what exactly is deserving of me faffing and what really is not. Unless I distract myself with a project like gardening or writing, I am Speck Detective all day every day. Life is just a list of jobs with no end in sight. Because perfection will never be reached. How sad is that?

My hair isn’t autistic. At least I don’t think so! My obsession with it might be or it might not be. But being distracted irritated and distressed by it all day might very well be. So a few days ago I pushed my fringe away from my face, stopped blow-drying it and let it wave. I cut inches off the rest of my hair and I now have a collarbone length, wavy bob with no styling. I just wash and go, as they say.

I’m learning that I don’t need to look at myself so closely and so critically all the time and I can stop assuming other people are too – because, let’s face it most other people don’t have Asperger’s and are not looking at things in the detailed way I am.

I don’t know what, if anything, will be chopped off next on my list of pointless daily faffs or what I will enjoy continuing to obsess about but I’m looking forward to finding out. And laughing at my fringe.

Good grief. It so does look like a wave though…

If You Think You Know Autism, Think Again

shutterstock_167168468What I’ve come to realise this year is even those of us on the spectrum can have preconceptions or narrow views about autism. It is precisely those preconceptions that prevent many of us from becoming diagnosed and prevent those not on the spectrum from being more aware and more considerate.

If you’re looking for the trainspotter with no empathy and a funny walk, who doesn’t understand sarcasm or fashion or popular music, and can’t ever make any changes in his life, then you’re missing most of us. If you’re looking for someone with no friends and who kicks, bites and screams, and who can never fit into society then you’re still missing most of us. These traits exist but they are not part of everyday life for everyone with autism and Asperger’s.

I thought my sense of humour, my understanding of others, my love of sarcasm and of new things; my interest in what’s happening in the world, the way I can change my routines, the way I have no fixed narrow interest, the way I can have a proper to-and-fro conversation, and an empathy for others so big it is literally physical, all meant I couldn’t have an autistic spectrum condition. (Let’s not call it a “disorder”, please: many of us feel very much in order.) And I didn’t know that women with Asperger’s can be so very different from men with Asperger’s they can seem to have a completely different condition on the surface. And I’d read about autism on a psychology course and even written a short children’s story for an autism charity, completely unaware of my own condition!

By the way, recent studies have shown the no empathy stuff is mostly bullshit. Ask us.

In order to know autism you don’t just have to have it yourself. In fact, many people without autism can understand it very well by studying and working with autism. To understand autism, you have to know people with autism: preferably male and female, adults and children, those suffering severely from their traits and those with high-functioning autism and Asperger’s. There is no one defining trait, no specific behaviour. You have to read about autism, let the people with autism tell you how they feel, and be ready to be proved wrong and have your preconceptions turned on their head. And, above all that, always remember you cannot presume to know and understand the mind of another person.

Anxiety and social anxiety are very common problems in autism but you’ll still find many autistic people going to work every day. Tiredness and the need for quiet are common traits in autism but you’ll still find many autistic people living in a noisy household and getting up early every day. I struggle terribly in the morning and take a very long time to surface but you can find many autistic people rising at dawn so they can enjoy the undistracted peace of early mornings.

Inside each and every autistic person is an individual set of likes, dislikes and opinions, the same as everyone else. Some of us present with the more recognised stereotypical physical signs you’re looking for, but many of us won’t. But what I do believe we do have in common (correct me if I’m wrong) is a regular sense of being overwhelmed and frustrated in a world dominated by neuro-typical people – and if you want to know why and what can make us feel better, don’t assume. Ask us.

My own knowledge of autism is still far from vast. I have mainly read about my own condition and others with Asperger’s/high-functioning autism – those who have good communication skills, but just knowing my knowledge is limited is part of staying open-minded and being ready for more and further understanding.

N.B. There’s nothing wrong with liking trains. I think because many of us are so disappointed by human error and distressed by the unreliability of living things, there can be something comforting about the predictability of machines.

Feeling a bit more free

IMG_8027An explanation not an excuse
An understanding not a pigeonhole
A badge not a category

A gentle twist of perspective and a kinder acceptance of me from others and from myself.

That’s how I feel about the conclusion that I have an autistic spectrum condition – one that if I had been assessed for 2 years ago would have been called Asperger’s. I’m still going to call it Asperger’s and call myself an Aspie. Asperger’s is different from other autistic spectrum conditions in that there is no delay in language development in childhood. Because people with Asperger’s have no language problems, it can be harder to spot, and I’ll bet there are hundreds if not thousands of people living with it that are unaware and are putting their traits and behaviours down to other problems or conditions.

The dust is finally settling here. It’s been a rather swift arrival at a new and different sense of self from that first suggestion from my friend, Elli (thank you, Elli!) in February, through all the reading and email queries I sent in March and the appointment and conclusion in April. It’s such a short space of time to be switching your thinking about yourself so drastically that it’s been dominating my life. It’s been a whumping great deviation from the me I thought I was three months ago to the me I’m just getting to know and love a little bit more now. But just knowing for myself that an autistic spectrum condition was very, very likely didn’t give me enough of a feeling of the affirmation I needed. I, personally, needed more relief from elsewhere – exoneration perhaps? Something that would be a metaphorical and literal document I could wave at people and give the whole process a seal of approval. Although I accept that others say just knowing for themselves is enough, I don’t understand it. For me this is as much about other people as it is about me. Why should I pretend? Why should I give the wrong impression? Why should I be dishonest about my feelings? I need other people to know about this and think about this and realise how difficult life has been for me. I want everyone to know that I get sensory overloads, how I can’t cope with situations I can’t control, how I need a bit of extra TLC sometimes. How I simply am different, and how fitting the neuro-typical world is very bloody hard work on a regular basis for me. At the moment while I am still processing everything, I am pretty much totally wrapped up in the whole thing and feel like slapping bright paint all over my body and running around naked so people can see just how different and out-of-the-ordinary I really feel.
“Normality” and expectation do still take up a great big chunk of my life though, as I find myself getting on with all that is needed to make a home tick along. It took a week (and a mini-meltdown) before I allowed myself the indulgence of sitting quietly and reading my report through properly and giving me the me-ness I need to carry on.

To the untrained eye I may not look any different and I may not behave any differently from they way I was 3 months ago. Why should I? Why would I? But, actually, already, I am: I’m standing taller, I’m holding myself differently, I’ve swept my hair from my face and I’ve lost a little weight. I’ve stopped pigging out, and I’m beginning to stop hating myself. I’m smiling more. I’m being nicer to my husband, and I feel we’re getting on better than ever. We’re having conversations about what it’s like to be me and I feel that that’s okay and he’s not annoyed or irritated by it (not every time anyway). And it’s not all negative anymore. It’s not only a string of problems anymore. It’s about how I’m different and there’s no point pretending otherwise. I feel calmer and less angry. I can actually see how I might just be a little bit lovable and I don’t feel so insecure about Richard’s feelings towards me.

The changes in my thought processes and my patience are marked too. But only to me. Despite appearances this is massive. It’s rearranged my whole history, my whole way of looking at life and given me a “now” – a “here and now” that I didn’t have before. This time is good. This age is good. I’ve been waiting all my life for an age and a time that suited me – I’ve always felt out-of-place and now I feel in place. The myriad of little tweaks Richard and I have had to make in the last couple of weeks to the way we look at me have answered and explained everything. All the knots are going and everything is gradually smoothing out. It’s like I was all at sea before and now I’m sailing. It’s all at once both the same life but a totally different one too. And I know that makes sense! It just does.

The girl who was too quiet, fidgety and reluctant to join in and who slowly dropped out of education has been reformed as the girl who did well to cope considering what she was dealing with and how difficult it was to concentrate in a classroom situation, and who should have had more support and understanding.
The unsettled, emotional young woman who failed to hold down a job for any length of time, and who was never satisfied with anything has been reformed as the perfectionist, Aspie woman who fought bravely against her instincts to run away and hide for years and who deserves a pat on the back for keeping on keeping on for so long – but who should have had more support and understanding.
You can’t get support and understanding for nothing though. How can you get other people to support and understand what you don’t understand yourself? Life was all about fears that I knew I shouldn’t have had and I never talked about my difficulties – they were too weird, too not normal, too untypical. I could see how other people seemed to enjoy doing things I hated, and endured things I couldn’t even contemplate, and I couldn’t see around, through or over that. I just kept schtum. I have been held captive in a solitary cell for years where the bars were made of “normal” and “social expectation” and “guilt” and “what does everybody want from me?” And I never knew the only key to open the lock was understanding.

For years a favourite song of mine has been I Wish I Knew How It Would Feel To Be Free sung by Nina Simone. I will play it and twirl around the kitchen with tears in my eyes. I’ve always felt trapped, and known I had an inner me and an inner strength that didn’t know where to go or how to show itself. But trapped by what? I didn’t know. I tried to guess. I made things up. I think now I felt trapped by what I didn’t know and what I couldn’t share. This line in the song always stood out for me, but now more so than ever: “I wish you could know what it means to be me.” No one can ever know what it means to be me, but some books written by fellow aspie women have come pretty close, and that soaring feeling of finally getting somewhere makes me just want to cry all over again.

I took the first steps by being honest in my writing about five years ago. It was like the old cliché of opening a vein onto the page. Once I started, thoughts and feelings came flooding out that even I didn’t know I held. From that honesty and new perspective came questions:
Why did I feel this way, behave this way, want a different life from so many others?
That honesty – and the bravery it took, and the support from people who read my writing and didn’t mind about my foibles – or who seemed to like me for them anyway was good but not good enough. It’s great that people can say ‘I know you’re shitty sometimes but I love you all the same.’ But what if I don’t feel I’m being shitty. What if I don’t believe I am shitty? What if I’m not being shitty? What if it’s because I’m speaking a slightly different language from a slightly different perspective and actually there’s not a thread of shitty in my intent. I’d rather people could stop seeing me as likeable shitty but instead as someone with autism who is having a meltdown or a crisis in communication. I’d rather people took the time to understand that autism can sometimes mean feeling shitty looks like being shitty, but it’s not the same. It’s really not the same.
And it’s great for online friends to say it doesn’t matter that I’m unsociable. But what about the people offline? That shortage of social interaction face-to-face can really cause other people problems. But what if I’m actually not unsociable at all? What if I’m burnt out, struggling, exhausted, dying for some time out. I’d rather people saw me as a woman with Asperger’s who has to battle anxiety beyond anything anyone else can imagine on a minute-by-minute basis and see how I need extra care, extra time and an understanding of my silences. Just not answering someone is weird and potentially rude, but just not having the words or the energy is different. It’s okay to be me but even more okayer to see me through the perspective of autism and let people see it’s not what they thought.

My point is I wasn’t good enough for me without Asperger’s as an explanation. I give off an aura of something I’m not. I hate how I don’t cope and I hate all the horrid physical symptoms that being anxious give me. Now I know what tools I am and am not armed with, I know I am coping better than I thought and I always was. It was just that I was trying to drink lemonade when my body is designed to drink chamomile tea.

And that’s where Elli came in. Elli has known me for ten years since we both participated in Open University social forums for parents, expectant mums and mothers with young babies. It sounds like she spotted something about me then but it was too soon to say anything. Over the years she’s seen me write and rant and talk about my family and my struggles, take photos, blog, and then, more recently, open up about my extreme anxiety. And that’s when she made her move. Elli sent me a short, friendly message to ask if I’d ever considered I might have Asperger’s, and because I knew she was experienced in the area and knew what she was talking about, I decided to take her seriously. And it’s from a book she recommended, written by a woman who only self-diagnosed, I decided I wanted a more official assessment for myself. And then everything began to fall into place bit by bit.

So now I know I’m okay and I need other people to know I’m okay. And not just okay in the Old Rachel sense of the word but okay in the New Rachel sense of the word. New Rachel has something to tell you: She has Asperger’s Syndrome, AKA autism. It wears her out. If she’s being seemingly normal around you, then you can bet your bottom dollar she is making a non-stop huge effort and that after you’ve seen her she will be exhausted and crave solitude and quiet. If any situation goes on for too long she may need to escape or there’s a chance she’ll blow, behave weirdly or simply stop talking. Rachel doesn’t crave the company of people or social situations like other people do but she can enjoy controlled situations in short bursts – especially with people she can be herself around. She likes her home and her husband and her children, her dog and her garden and her peace. Rachel loves other people, thinks about and worries about everyone regularly. She is genuinely interested in other people and finding someone she has something in common with makes her super happy. She has a deep interest in society and human behaviour and wishes the whole world would be nicer to each other but she realises now she has to be nice to herself first in order to survive.
Rachel can’t stand something going on around her when she is trying to think. It feels like it stops the pathways in her brain from working. She needs to shut everything out in order to be creative. Rachel feels she must be creative regularly to feel whole.
Now that you know it is Asperger’s and not depression or rudeness or laziness or a bad attitude or hostility perhaps you can see why she needed this assessment and understanding and how it is helping her.

I don’t need anyone looking after me. I’m a coper, I’m a determined, bloody-minded fighter – and I now know a bit more about the extent of that fighting. But I do need care and I do need the right to go ahead and be an autistic person. Because that is what I am. And now I’ve got that right.

Not doing “normal” very well knocked my confidence and my self-esteem. As my school life worsened and I graduated into adulthood unprepared, I slowly lost the belief that I was as clever or as capable as some of my peers. I began to feel that no one else believed in me either. When you are young, thinking that no one believes in you can stop you chasing your dreams. The psychologist wrote on my report that my problems increased when social demands increased and that I underestimate my achievements. Understanding the connection between my life experiences and the difficulties imposed by my condition makes everything make sense. I understand how my sensory problems and anxiety have altered my sense of self because of the way I experience the world. One of the first things the autism assessment did for me was put to bed any doubts about my intelligence. I scored on the 98th percentile for IQ and for verbal comprehension, and the 92nd percentile for perceptual reasoning. When the psychologist told me I was in the top 2% for intelligence I assumed I’d misheard her.

I wasn’t entirely sure what I wanted to read in my report. Once I’d got the verbal conclusion from the psychologist on the day of my assessment I didn’t know what to expect in the post, but what I got was like a great big hug: There was the acknowledgement that what I’d been experiencing all my life was difficult and traumatic and a suggestion that my better understanding of it would help to reduce stress but there was also a recognition of my exhaustion, my achievements (it’s nice to see them written down by someone else!), and, better yet, there it was in black and white: “Through assessment and subsequent reading on the subject, Rachel will be able to obtain a clearer understanding about the nature of her anxieties. This means there is an opportunity for Rachel to accept some areas that she finds just too difficult (and not have to feel guilty about it).”
There. That’s what I wanted. I need to stop feeling guilty.

The psychologist concluded my report with words that made me cry:
“Rachel has shown great internal strength and resilience to have achieved so much already. I’m sure that with the greater understanding she has about Autism Spectrum difficulties and sensory difficulties, she will be able to decide on what other areas of life that she would like to tackle.”
For now I’m just concentrating on getting to know the new me and looking at everything I do and feel in a new way. And giving myself permission to be alone because it’s okay to and I’m supposed to.
Along with all this I’d rather people knew why. I’d rather people understood, and I’d like Richard to be armed with the knowledge to explain on my behalf if ever he needs to. Because just acting weirdly or differently leaves people to fill in the blanks with the wrong information and that can hurt.

The psychologist hoped I had found the process a positive experience. I can honestly say I can’t think of anything else I’ve done in the last few years that has been this positive. Talking to someone who is neither friend nor family who was simply there to gather information meant Richard and I could both talk honestly about things we didn’t perhaps feel comfortable telling other people. It also meant that, as someone official with years of experience working with people with autism, the psychologist made the whole thing real and something to be taken seriously – because no matter how much people claim to know you and understand you, unless they have autism themselves they don’t “get” it. How can they? I think it helped Richard to take the whole thing about me more seriously, and I really hope it means he respects and admires just what it’s taken for me to come this far.

Never underestimate the power of a woman with autism. And never underestimate the power of an autism assessment.

Thanks again, Elli!

Bashing a Square Peg into a Round Hole

shutterstock_46095241I think it’s safe to say that if the human race were mainly made up of autistic people it would be quite a different place from the world we recognise today. If countries were run by highly-functioning autistics/people with Asperger’s, the rules would be a bit different. There would be a greater emphasis on fairness and many world problems would be solved by people who prefer to do rather than talk and give speeches all the time. There would be a gobsmackingly big increase in new inventions and new medicines. And all itchy uniforms would be ditched for soft, comfy cotton or nudity. There would be Escape and Chillout Pods in every shop, school and workplace. And it would be illegal to say ‘Face your Fears’ ever again. But there might be an unusually high resistance to change and there would probably be some pretty polarised views on what is and what isn’t important or interesting and what we want for our children. Despite a strong sense of justice and a fear of conflict and pain, it’s just possible that too many people with strong views one way or the other might cause stand-offs between communities and nations. Maybe the risk of war would be greater. Maybe it would be equal. Or maybe we would do away with war all together because there would be no soldiers, and no one thought to create weapons. Why the heck would you want to waste time and money killing people, after all? Maybe however much we disagreed with our fellow earth dwellers we just wouldn’t see the point in fighting. In an autistic community you can just ignore the people you disagree with.

But where would the sense of community extend to? Would it end where the house wall ends? Where the street ends?

In my thinking my community goes on and on. Its reaches right around the world and back again. I am not restricted by manmade barriers. I think you’ll find a lot of autistic people show concern for those beyond an observable community in the sense of a street, a village, a country or a set of beliefs. We are not constricted by the same structures. We are often so alone in our world and in our thinking that we are not confined by the same social constructs and actually think bigger.

I’m thinking a lot this week about how society behaves. How people expect a lot from each other without having a clue about how demanding they are being. There are sets of unwritten rules about manners and appropriate behaviour that are so set in stone, so conventional, they are not even discussed.

And then someone like me comes along who doesn’t play by the rules all the time and then they are discussed. Like apparently not looking at someone and holding their gaze while they are talking to you is rude! I didn’t know that. How is that even rude anyway? In the autistic world we see staring at someone in a conversation as a threat, as a challenge, as a distraction. It’s much more pleasant, sensible, polite and friendly to move your eyes around a bit and not threaten other people. If someone loves you, they’ll stare at you safely when you’re not looking. Give them space to think. They know you’re interested in what you’re saying. Otherwise you wouldn’t even be in the same room together! Obviously.
In this world, run by autistic people, you 1 in 88 of the population non-autistic people (1 in 88-ish. That number keeps changing – I don’t know what you’re up to…) need to learn the rules and do as we do. LOOK AWAY WHEN I’M TALKING TO YOU! Just turn you body toward me and nod now and then.

And then there’s that thing when if someone’s having a birthday you’re supposed to ask a load of people to do something with you of an evening. Maybe go out, maybe have a dinner party. Yeah, right. Why would you want to do that?! In the autistic world, you get your favourite thing for tea, you have it by yourself or with your 1/2/3/4/5 favourite person/people (okay 5 is stretching it a bit) and watch your favourite programme or film on telly or even just hang out with some other hermits on the Internet. Now THAT is how you have a good evening. DO IT! You can have alcohol too if you need it and even have a little dance when no one’s looking. Groovy is still happening in Autistic World. Don’t waste a load of money and a load of time making idle chit chat and gossiping with people you don’t know EXCEEDINGLY well. You know it’s better if you’re around people who don’t mind you picking your nose or suddenly swearing. Don’t forget we are the normal now – you are in the minority. You must make yourself fit however unnatural it is for you.
Try harder.

You don’t like it?

Shame. I’ll get my hammer and make you fit.

Bash. Bash. Bash. Okay so it hurts. You’ll thank me for it later.

Only I wouldn’t do that, would I? I have an enormous sense of justice.
You just do what feels right, love.

Must dash I need to cut the itchy label out of my jeans.

Please Don’t Let Me Be Misunderstood

Little makes me happier than a coming together of minds: a shared joke, a joint appreciation or an understanding. Despite occasional appearances to the contrary, I am acutely curious and passionate about others and actually thrive on human interaction, so other people’s responses are crucial to me.

This is why not much can upset me more than feeling I’ve been misunderstood.
It leaves me feeling wounded and shaky like a frightened animal.

It’s partly an almighty disappointment with other human beings: that no one – even the best people – will ever completely understand another person, combined with a sense that yet again I’ve failed at human connection. I spend some time wondering whether it’s my fault or someone else’s. I pick myself up again and again and wonder why I’m getting it so wrong and why I care so much.

Sometimes I think it’s because the words tumble out too fast. There were too many on my lips and they’ve come all at once. People see those words and make their own sense of them and suddenly I’ve said something I haven’t said. Or I haven’t managed to say something I wanted too. I’m upset that someone doesn’t know me enough to know that I can’t possibly have meant what they thought I meant, but also upset that I’ve failed to make myself clear.

Double failure.

This kind of human error is a big heartbreaker. It causes a kind of distress and a tension on already frayed threads and loose connections with what should be ordinary, straightforward social behaviour.

Some days I fail repeatedly and probably should just give up, stop digging and stop expecting. But the message that today was not a good day to communicate is delayed, and all too often and all too late I wish I’d stayed hidden.

There’s a misconception that people with Asperger’s don’t care overly about others’ feelings but it’s far from the truth. We care so much, that to think we’ve got it wrong is often almost too much to bear. And so, of course, that means it’s easier and safer to give it all a miss now and again and save the pain of fluffing it all up yet again. I would bet a large sum of money that people with autism are far more aware of and affected by other people’s feelings than anyone gives them credit for.

Constantly trying to figure out who wants what from you and how best to avoid failure is exhausting and distressing, and we often get it wrong. That’s why I think people like me find it easier to be alone. Not because we don’t care but because we care beyond anything we are capable of dealing with.

Giving History New Meaning

I’ve taken last night’s thoughts from my blipfoto daily photo journal and put them in here:

Things have been a bit slow.
I think it’s probably the fallout from Monday’s assessment. Yesterday I had a headache all day and today I’ve had a stomach ache all day.

I was expecting some sort of emotional and physical reaction while I recovered from the stress and anxiety pre-assessment, and my reaction to the psychologist’s feedback post-assessment.
Even though it was what I’d been preparing myself for, it’s an awful lot to take in.
After all it’s only 2 months since I started contemplating the likelihood that I have Asperger’s.

The last 2 days I have been churning with memories of school days and wondering how much better things could have been had I been diagnosed as a child (obviously not possible in the 1970s and 1980s). My grades dropped and dropped and dropped, the enthusiasm of my teachers dropped and dropped and dropped, and my ability to be accepted for who I was by my peers dropped and dropped and dropped.

The psychologist said I did incredibly well in the tests. She said even when I said I wasn’t sure and said I was guessing I was getting things right. She said I was in the top 2% intelligence-wise. She looked through my school reports from the age of 5, and when she got to my exam results she was surprised. She said she was expecting much better. But I’d given up. I think I started not bothering at about 10 years old but was always hoping things would get better. Only they got worse. I gradually convinced myself I wasn’t very clever after all.

I’ve been thinking about the girl who bullied me at secondary school. And the girls who participated in her taunting. What if I’d been protected from that because of my vulnerabilities? What if the teachers had known why I was so quiet, why I had to be so quiet? Why I had to look down to listen. Why I couldn’t bear to stay at school in the lunch hour. Why I struggled to organise myself. Why I often wasn’t sure how to behave or how to fit in or what to wear.

I know that we are the sum of our struggles and not just our achievements and they make us who were are but I would like to take away some of the pain from my past.

School was a big pile of shitty crap for me. The years after school were difficult too as I struggled to find my way in the world and couldn’t understand what was expected of me.

All I can do is write about my experiences and hope that things are improving for today’s young people with the higher functioning, less easy to spot autistic spectrum conditions because some sort of acceptance in ourselves and from everyone around us can make all the difference in the world.

It was tough being a teenager. It was very, very, very, very tough. I never knew just why it was so extraspecially tough until now and I want to go back in time and rescue that fragile, vulnerable young girl and tell her she’s alright. I want to tell her school teachers and her school mates that she’s alright. I want to tell everyone who misunderstood her that she didn’t have a nasty bone in her body, that she’s a really loving, forgiving person and she deserved better, kinder and more thoughtful.

I want to tell everyone who fills in the missing information about someone they don’t understand with nonsense they’ve made up in their own head to be less shallow, and if needs be just accept that they don’t understand.

Screaming in Paradise

We were talking about meltdowns in my assessment on Monday and I said how I’ve managed to avoid many all my life through fear of others and my strong awareness of appropriate behaviour. But that is sure to be the reason I suffered with stomach aches all my life. When I was young I would wait until I could go to bed and cry or I would rip things. After school I would often run home and I think the physical exertion helped. But the feeling of needing to explode doesn’t go away.

As an adult with responsibilities I would say for me it’s got harder. There’s an urge to smash something or scream or run away, and Richard was telling the psychologist how I often sink my teeth into my hand when I’m teetering on the edge. She called this self-harming and I hadn’t thought of it like that before.

When Richard came home on Saturday he found me pacing and winding up. I don’t call it winding myself up because I actually feel at the mercy of something beyond my control. I think I’d waited until there was another adult around. I kept saying I don’t know what to do, I don’t know where to go with these feelings, I need to break something or explode somehow. In this case ranting and pacing and then spending time alone in the rain calmed me down eventually but it’s such a horrible place to be when it’s happening.

Holding on and holding back and being calm all day and just keeping going is so tough. I write lists, I make sure I know what’s important and how to feel I’m achieving but there are still days when, despite actually being quite cheerful and the sun shining, there is a strong desire to stop the world turning because I feel I’m not holding on properly. Shouting and yelling and pacing works to a point but it doesn’t make me feel good: it makes me feel sad that it got to that. Having somewhere I could crawl into and curl up in a ball and have a nap would be nice. But I’m the grown-up, the parent, the adult, the responsible one so I keep on fighting and waiting until the the chance to open a valve and release some steam occurs.

It’s hard being an adult with Asperger’s.
It’s hard being a woman with Asperger’s.
But when you’re a wife and mother too the juxtaposition of domestic bliss and contentment against an overloaded brain and sensory system is often impossible to explain.

Assessment Day

It’s the morning of my assessment for Asperger’s, and I’m close to cacking my pants (excuse the graphic honesty!). I’m so glad this day has finally come though because these last few weeks of waiting have become more and more fraught as time’s gone on. I’ve had so many restless nights recently and I am mainly being powered by adrenalin and tea. I can’t imagine having to wait the estimated 2 years currently expected through the NHS in our area! (I’m sure it’s just as bad elsewhere) and I feel sure I would bottle out given that much time to worry about it.

I only vaguely know what to expect of today: my psychologist has given me a rough itinerary over the phone – which I was sensible enough to write down, otherwise I would have completely forgotten. But I still don’t know what it will involve or how things will go. That uncertainty is really scary.

I’ve swung back and forth over the last few weeks from thinking there’s an extremely good chance I have the condition known as Asperger’s Syndrome (although no longer a formal clinical diagnosis), and thinking I’m just a bit different, awkward, socially inept. But each time I’ve swung back to the “Yes, of course I am on the spectrum” camp it’s been with renewed vigour. Asperger’s is all about the social hell I experience and the more I’ve read in the last few weeks, the more set in stone my own self-diagnosis is.

But I still want outside, professional confirmation, and I hope so much that it comes today.

For schizophrenia and bipolar disorder there is medication, for depression and general anxiety disorder there is counselling and/or therapy and/or medication and/or self-help guidance. But what is needed for autistic spectrum syndrome is acceptance and understanding. It’s not about a label for label’s sake, it’s also about ruling out the other things and that includes ruling out a neuro-typical brain. It’s an explanation. An answer.
I’ve not really prepared myself for disappointment today. I hope it doesn’t come.

We’re about halfway through and I’ve escaped for a wee. I was thrilled that the psychologist turned up in exactly the kind of car I was picturing she would have – and in the same lovely blue I had imagined. I’ve decided it’s a good omen. The first hour Richard was required to sit in and speak honestly about what a mess his wife is. I don’t think he enjoyed it too much but he seemed to be very helpful.

It’s all over and I’ve left the room while she summarizes all the tests and questions. I think I know how this is going to go now. She’s let a couple of things slip out, like nodding at the information about me playing schools as a child. She said it’s a classic thing that girls with Asperger’s do. I haven’t managed to eat yet today and feel very light-headed.

It’s all over. I’ve been given the confirmation I was looking for. I am indeed on the autistic spectrum. The psychologist is calling it Asperger’s one minute and high-functioning Autism the next. But the main thing is I have that official, professional corroboration I so wanted. She left at about 3pm and I took a few minutes to text and message a few people who I thought deserved to hear it first (apart from my sister in Australia, who I didn’t want to disturb in the middle of the night), and then Richard and I went for a walk on the beach with the dog.
Then I phoned my mum, and now I’m sitting here thinking about it all.

There’s a really important message in all this. I’ve read books by autistic people, books by autistic experts who themselves are not autistic. There’s a lot of talk about coping. I’ve had a good long think about whether I would want a diagnosis if I was confident and coping.

Well if I was confident and coping I wouldn’t have gone looking for a diagnosis. That’s the bottom line.

The psychologist said something similar. She said I have unusual habits, I have some big differences, but differences in themselves are not enough to call it a problem. It’s a problem when it’s a problem. And that’s the thing: it has been a problem. Well, not knowing has been a problem. Social stuff isn’t just difficult, it is like a living nightmare, things frighten me to the point of illhealth. I’ve spent my life trying so hard to be conventional, sociable, an ideal wife and mother, and it has worn me down so so badly. I am a human being but I am not the human being that other human beings are. I have some bits of my brain put together differently and that means I am not like other people. I’m not just different I’m Different.

We talked about what this knowledge would mean for the children, and agreed that knowing it was something genetic would help them to understand any problems they might encounter themselves. We agreed they may never necessarily need a diagnosis themselves but it might be some help and even some comfort to know that when seemingly normal everyday things get tricky or seem ridiculously difficult there may be an explanation to fall back on. It may just be a help to say ‘I’m doing okay considering what I’m coping with.’ There may never be a reason for any of my children to consider autism for themselves but I hope the fact that I was brave enough to go through today will mean something to them if they need it.

The psychologist looked at us after listening to us talk about our life and said ‘You’ve done jolly well to have coped with everything you have coped with.’ And it’s true. Especially now knowing why it was all so bloody hard for me. But at some point I realised I wasn’t coping and I was exhausted from trying.

The psychologist also asked me if I was relieved. I said I was. She totally understood my reasons for wanting an assessment and saw that some of my traits have been causing me distress because I didn’t understand them and was trying to hide them. I said I spend every day worrying how much my behaviour impacts negatively on other people and it will help me that other people know I am struggling against the odds.
I’d quite like those close to me to be proud of me when they think about just what I’ve put myself through over the years. And if they’re not proud I hope at least they can see how much happier this makes me and be happy for me too. Now, just knowing that I was made this way makes me feel okay about myself, and is going to help me rearrange my thinking. I’m going to be calmer and more accepting of myself. You’ll see.

Now I can think about what I want to try at, what’s worth trying at, and what I can happily ditch.

Thank you so much to the friend who introduced me to the idea that I might be on the autistic spectrum. It did always look like a country I wanted to go and visit.

And if another bloody person mentions boxes I’ll bloody deck them. Nobody puts Rachel in a box. I’ve never felt less boxy than I do today. I feel free. So nerr.


Weird Or Wired?

shutterstock_169863227It’s the final countdown to my Asperger’s assessment.

4 days to go.

I’m worrying about it a lot. It’s now become a permanent presence at the front of my mind. I’m even thinking about what I will wear – in a ‘Will that give me away as autistic?’ kind of way. I’m worrying about what my husband will say about me, what the notes my mother has written will or won’t say about me and what she’s left out, what my home will say about me, whether I will perform too much like a neurotypical person in some of the tests and not convince the psychologist I have an atypical brain. After all I have spent 44 years training myself to understand other people and blend in.

This assessment is an enormous thing for me, and my brain is thinking about my brain constantly, and it’s all very weird and difficult.

I’m so preoccupied by the event I can’t function. I’m opening cupboards and forgetting what I wanted from there in only a split second, I’m asking my husband the same question twice in five minutes – and still forgetting the answer, I’m walking around and around in circles wondering what I’m doing. And I’m tired and I’m grumpy. I’m jiggling my jaw side-to-side rhythmically so that my teeth chatter more than ever and, in an attempt to stop myself doing that because I’m worried I’m wearing down my teeth, I’m biting down hard on my tongue. I’m worrying about silly things too – really small things – as if it’s unfair to completely blame the forthcoming assessment for everything I feel.
My sensory overload problems are at an all time high right now and I can only cope with one noise at a time. I’m closing my eyes or telling people to shut up and feeling like a bad person. We watched Monkey Planet last night and I couldn’t bear to watch gibbons swinging in the trees because the movement was making my eyeballs ache and my head whoosh.

I’ve been thinking a lot about anxiety and the amygdala in my brain recently. It seems to me there are two main different kinds of anxiety in people: the anxiety triggered by stress or an event or ongoing life problems of one kind or another, and the anxiety that some of us are born with because we have an enlarged amygdala. I think I have the second kind. I think the first kind might be trained out or relieved with a combination of Cognitive Behavioural Therapy or counselling and/or life changes. But the second kind is something that we need to learn to live with and accept. When I went for my first and only CBT session I realised that they weren’t going to be able to help me. I am anxious always about everything – everything – and always have been. There was no trigger, there is no better time. It’s not all in my mind and something I can train myself out of. I believe I was born with it. It’s no use telling me I have nothing to worry about or something’s not going to be as bad as I think, because I do and it will. My fear is big and all I can do is know that I have big fear and console myself that that is the reason I worry. It helps, believe it or not.

Why can’t my brain be more like my body?
I like to do yoga (alone at home) and take walks. I can see how not feeling like exercising but doing it anyway actually works. I feel stronger, I feel glad I did it and it’s easier next time. I get a Can Do response from building up my physical strength.
But with my brain there’s no Can Do response. I push myself to do things I don’t want to do and it never gets any easier. I don’t feel stronger: I feel weaker. I feel less inclined to do things again. As I’ve got older I’ve become more anxious, more loathe to do things with other people, and generally more tired of trying. I don’t have unrealistic fear or paranoid fear: I fear normal everyday life and my own shoddy attempts to deal with each day, each activity, each event. I know how things will go, I’m not kidding myself, but I still fear them. I’m not thinking of lions or earthquakes or conspiracies. I believe I have wired fear not weird fear.

Here’s me in an imaginary CBT session:

‘You’re on your own at home. What’s the worst that can happen?’

‘The doorbell rings.’

‘Really? Why is that bad?’

‘Because I hate the sound of the doorbell.’


‘Because it means someone’s at the door.’

‘Okay… So the doorbell rings. What’s the worst that can happen now?’

‘I’ll have to answer it.’

‘So. You answer the door. Now what’s the worst that can happen?’

‘I’ll have to see someone and talk to them.’

‘And then…?’

‘And then I’ll be pissed off and spend the rest of the day hoping it doesn’t happen again.’

‘And if the doorbell doesn’t ring?’

‘The phone might ring.’

‘Why is that bad?’

‘Because it means someone’s on the other end.’

‘Okay… So the phone rings. What’s the worst that can happen now?’

‘I’ll have to answer it.’

‘I see where this is going… And if there’s no one phoning or ringing the doorbell?’

‘Maybe I’ll have to leave the house for some reason.’

‘And if you do? What’s the worst that can happen?’

‘I’ll have to see someone and talk to them.’

‘And then you’ll be “pissed off and spend the rest of the day hoping it doesn’t happen again”?’


‘So, imagine you’ve answered the door, answered the phone, been for a walk, dealt with people. It’s the end of the day. Don’t you feel better?’

‘No. That sounds like a terrible day. All those people will have stopped me from doing things I wanted to do.’

‘You worry too much.’

‘I know.’

And my biggest fear about Monday?
It’s that I won’t be told I have a brain wired in a way that explains or accounts for most or all of my behaviours. I want to be told ‘Yes, Rachel. Your brain is wired differently. There’s no way you can behave any other way. Or pushing yourself to behave differently is difficult for you. This is the way you are made. Carry on with being you and be happy.’

My husband’s said, ‘Well I can tell you that.’
Which is the best thing anyone can say. Ever.

I’m still nervous as hell though. This is my life we’re dealing with.



It’s hard to be honest about how much a flashing light bothers you, how much the sun gets on your nerves. Every one loves the sun, right?

It’s difficult to be honest about how you’d rather sit a little way away from someone because their body heat is overlapping into your personal space, their food breath is wafting up your nostrils, their laundry should have been rinsed more thoroughly (‘Is that a biological 2-in-1 she uses?’)

It’s not easy to be honest about how the sudden hug you got that threw you momentarily and made you want to pull away was welcome but you should have been asked first. How you need warning even for the very nicest of things.

It’s embarrassing to explain honestly that you struggled to get dressed this morning because your clothes felt like they touched your skin too much after a shower. You’d rather sit naked on the floor alone for an hour and maybe just write something or read something and get dressed a couple of hours later than everyone else.

It’s almost too complicated to explain honestly how you really like someone’s face and eyes and company but if you didn’t have to look at them and could have a conversation from behind the sofa or in the dark or perhaps by email you’d be able to get your words in the right order and be more confident.

It’s impossible to be honest about how you hid all day just because being yourself is something you are a little bit ashamed of, embarrassed about, and yet you need to be yourself so you don’t go mad.

The honest truth is there if anyone wants it. But you don’t share it because you know no one really wants that kind of honesty.


They see a disorder
I see this order

They see dysfunction
I see this function

They see broken and disorganised, faulty, misfit, loner
I see a sculpted shape, fashioned for peaceful solitude

They see problems and hurdles, solutions and fixes
I see happiness in difference and pain in affectation

They see a channel to bring me into the light
I see a tunnel to drive me into darkness

They see a fallen fledgling to bring back to the flock
I see a solo songbird out of pace with the starlings

They see damaged wings to realign
I see a valid feather not a shape shifter

Waiting, Waiting, Waiting…

My Asperger’s assessment is now only 2 weeks away. Oh, how I wish it were today.

I hate waiting for anything. When I was waiting in line for immunisations at school, I passed out because the waiting was too much for me. The injection itself was nothing.

I’m notoriously good at seeming like I’ve forgotten about things – particularly important things. It’s usually not memory loss but a coping strategy I’ve unintentionally developed over the years to keep me from living in a kind of permanent panic about any forthcoming events.
I block them before they block me, I guess. I don’t want to be crippled by the impending stress they will be sure to cause me. I’ve even stopped entering things on the kitchen calendar if I don’t want to think about them, and my husband has learned not to talk about things that I’m likely to be dreading.

But this blocking of events and stopping myself thinking about them in specific detail only does so much. It takes away actualities and can often stop me running a preview in my mind repeatedly of how things might go; the denial helps me to stay in the here and now but it doesn’t take away the fear, the uneasiness and the apprehension. My guts started rolling the minute plans were made, and despite trying to carry on I am on edge and getting edgier the nearer we get to an event. It seems I can get wound up about something while thinking of entirely different things and concentrating on something I usually enjoy.

It’s 7 weeks since I first started my investigation into my possible Asperger’s assessment and 6 weeks since I began discussing it with my family. It’s only 5 weeks since I emailed all the psychologists I could find in my part of the country, and only 4 weeks since I booked my appointment for my assessment. It’s not been long at all but it seems like longer. A lot longer. It feels like a kind of sentence. I have been trapped in a weird bubble where my head is not the same, my communication with others is not the same and yet I am carrying on as usual. Well, trying to. Unfortunately I’m not really quite here. I am locked in a kind of pre-assessment hell that no one else can share. And I know that whatever happens after it – whether it be the outcome I want or the outcome I don’t – it will be difficult. There will have to be processing and adjustment whatever the psychologist says. I not terrified, I’m not scared, but I am nervous as hell, worried about the whole day, and however much I concentrate on other things and block, block, block, the sense of impeding somethingorother is always there.
I’m drinking too much wine at night. I’m eating too much. I’m biting my nails more than ever, and I’m bumping into things more than ever as if the house has suddenly shrunk around me. I feel each and every day is picking on me and that inanimate objects are playing practical jokes on me. I’ve put on half a stone and I’m waking up frightened of beginning each new day.

I keep asking myself why I’m putting myself through this. Was life easier just being a social misfit with a growing list of concerns about the way I deal with life? Well maybe the not waiting for an assessment bit was easier but I need answers. And the answers I’m finding on every page of every book I read about autism are looking increasingly like the right ones.

Cynthia Kim, in I Think I Might Be Autistic, writes:
“…an ASD diagnosis as an adult … changes everything and at the same time I’m much the same person I will always be. The difference is now I’m struggling less with myself.
The self-knowledge that I’ve gained through the discovery and diagnosis process has helped me accept myself as I am and identify the types of changes I’d like to make in my life.”
And that’s exactly why I’m doing this.
Cynthia Kim can be found online here: She’s interesting to me because she was diagnosed at the age of 42, and I am 44.

Unfortunately as the day draws ever nearer, my fear grows that a psychologist will disagree with my self-diagnosis, and that worries me immensely. Then what?

I’m waking up in the middle of the night and thinking about how I’m rearranging my head, my history, my daily life, my future. The Asperger’s label is my golden ticket to make sense of it all. What if I don’t get the golden ticket?

Fourteen days to go, and counting. Although I’m nearly through today so I guess I can call that thirteen days and fourteen nights now.

This afternoon I said to my husband, Richard, ‘I miss you.’ And I do. I miss not being so completely wrapped up in this bubble.
I can’t wait until it’s all over.


shutterstock_169863227I’m thinking about my response to something you said. I have many responses to choose from and I’m not sure which I should use. First I want to be sure I’ve made sense of what you’ve said. There’s a word you used that might mean something else and I want to be sure I’ve understood you the way you want to be understood. If I don’t know you very well that might take me a few extra seconds. The conversation has made me think of a hundred different things that may or may not be relevant. I need to filter those. What I say needs to be appropriate to the moment.

Which response should I use and how will I convey my answer? If you were someone else I would use a different language – different sets of words.

I finally decide what the best response should be. But it’s too late. I’m too slow. Someone else has spoken. The conversation is over. You’ve gone. It’s the middle of the night, the next day, the next week, months later, years later.

And this is what you saw:
She stares at me strangely for a second. She looks down. She looks at the room around me. She says nothing. Did I offend her? Did she not understand me? Is she stupid? She fidgets rudely as someone else talks.

Or maybe this was one of those times where I had to give an immediate response: ready or not. Maybe I blurted out the first unconsidered words and tried to catch them as they escaped: ridiculous, thoughtless and fancy-free, inappropriate and nonsensical.
Because that wasn’t how I felt at all.

I’ll write down what I mean. How I feel.
I’ll think. I’ll edit. I’ll read through and rewrite the bits that aren’t true.

And you may never know.

But someone will.


At least, I hope so.

The Toast Burners

I burnt my toast again this morning. I’ve decided that making toast is boring and too simple and that’s why I deviate. In fact it’s so boring that I’ve just deviated from writing about it into a little exploration of the word “burnt”…

Apparently “Burned is the older form. Burnt came about during a period in the 16th through 18th centuries in which there was a trend toward replacing -ed endings with -t in words where -ed was no longer pronounced as a separate syllable. Later, British writers continued to favor [favour! This is clearly American…] the newer -t forms for a handful of verbs, while North Americans went back to the more traditional -ed forms.”
~ courtesy of


Last night I made a fish pie plus a vegetarian option for our eldest daughter. I juggled (or should that be “jugglt”?) boiling eggs, chopping onions, making a white sauce, skinning and chopping salmon and haddock, scrubbing, chopping and parboiling potatoes, etc, etc, etc… I made 2 separate dishes synchronously. I used a recipe I’d found on the Internet and I altered it to suit us. I concentrated on doing this and only this for an hour and that’s why it all came together. And it was yummy.
See: I can cook. I can do concentration. I enjoy things I can throw myself into, that I can do alone, that take the whole of me. I am designed for projects, for research, for periods of intensity.

I can’t stand at a toaster and wait. Not even for 30-60 seconds. I have to wander off.
It’s intensity I need. I can’t be doing with faffy, lightweight, ordinary stuff. I get bored.

Unfortunately for the rest of my family, you are not permitted to talk to me or get in my way while I am in the intensity zone, and after that intensity I am burnt out and need to fizz quietly in the corner like an extinguished flame.

It’s a fact that many autistic people struggle to cope with normal every day things. It’s not the same things in the same way every day and it’s not the same for everyone. Just like neuro-typical people we are all very different from each other and have our own likes and dislikes, problems and skills. But there is a suggestion in a lot of research that some brains have evolved this way over time because the human race needs brains like ours.

We are the chosen ones.
We are the toast burners.
Cherish our special skills.


Walking Away From My Breakfast

I think the reason I’m not skinny anymore is other people have reminded me to eat. You have to have meals when you have a partner or a family. When I first tried to live on my own I literally didn’t eat some days. Then I put it down to being on a stupidly low wage and not budgeting properly. But in truth it was largely about organisation and prioritising. (A living wage would have been nice though…)

Sure I get hunger pangs when I’m on my own; I put toast in the toaster. But then I walk away and find things to do while I’m waiting for the toaster to pop.
Just now I decided to load the washing machine while waiting for my toast. I didn’t have enough for a full load so I went upstairs to find some more things to wash. The toaster popped. I went into our youngest daughter’s room and looked for underwear, I went into the bathroom, picked up the bathmat and hung it over the radiator. I saw that the toilet needed cleaning. Again. I cleaned the toilet, the shower, the basin. Half an hour later my toast is still in the toaster.
I’ve pushed it back down to reheat it and walked away again.
I’m going to heat the rice milk for my coffee in the microwave in a minute. And then I’ll heat it up again in about five minutes.

Earlier I had set myself the task of trying to get in and out of the shower and get dressed and be downstairs in half an hour. After 24 minutes I remembered to get in the shower. After an hour I was trying to work out what took me so long.

Some days I am faster. Some days I am slower. Some days I have to rely on adrenalin and panic to get me through an unavoidable deadline or a necessary timescale, but that leaves me feeling unwell. Some days it’s all really funny. Some days I want to cry at the missing time.

Neuro-typical people say they struggle too. But they don’t struggle the way AS people struggle. If they did they would be more understanding.

I suppose one way to describe it would be to say it’s like only doing things because you think you should but really there’s something else – something stronger – operating against what you’re trying to do all the time.
And I mean ALL. THE. TIME.

The world is unbelievably distracting, my mind is unbelievably distracting. I’m not always going where the compass points. All points are the magnetic North with me. You can’t control this ship.

Where was I?
Ah yes: Breakfast.
(It’s 11am already)

PS Don’t feel sorry for me. I’m getting an awful lot of sympathy recently which is nice and heartwarming but realising I’ve been struggling for a reason and can now be honest about my exhausting fight to be normal for so many years is actually quite brilliant. So be happy for me if you want to feel anything. :)

PPS You should see my toast…
Toast anyone?

I Fooled You All

I kept my house clean, I kept my kids clean.
I did my washing, I made the beds.
I remembered birthdays. I dressed up.
I smiled and I laughed.

Oh how I laughed. How I played.
How I drank. How I obeyed.

I learnt to cook. I learnt to iron.
I learnt to drive. I pretended to survive.

With my cloths and my spray, I wiped the ‘Table, surfaces, sink, cooker, floor. Table surfaces, sink, cooker, floor.’

With the vacuum cleaner I went ‘Dining room, kitchen, sitting room, hall, stairs. Dining room, kitchen, sitting room hall, stairs’

I picked up the ‘Shoes, coats, washing, rubbish, recycling. Shoes, coats, washing, rubbish, recycling.’

In the bathroom I dealt with the ‘Dirty clothes, towels, basin, bath, toilet. Dirty clothes, towels, basin, bath, toilet.’

At each turn I reprogrammed.
With each task finished, I changed the list. Always five things, always repeated.
Keep the focus, keep on course.
Don’t stop. Don’t talk.
Don’t answer the phone. To stop is to fail.
A changed route means anger and confusion. You’ll never pick up and start again. You’ll lose the power to carry on.

Keep on, keep on, keep on, keep on, keep on.
Keep up, keep up, keep up, keep up, keep up.

Keep the rhythm. Keep the pace. Keep up appearances

You have to go out they say. People who don’t go out are depressed, are hermits, are weirdos, are creepy loners.

A drink. Another drink, another and another.
‘Let’s go home.’
‘Let’s stay out.’
‘Another drink.’
‘Drinks at ours!’

Maybe next time?

Please say there won’t be a next time.

I can’t



No. More. Words.

I can’t cope.

I’ll be that depressed, hermit, weirdo, creepy loner.

I’ll make tea. I’ll sit down. I’ll look at my photos. I’ll write some words. I’ll write a gardening list.

I’ll find me. I’ll find peace. I’ll stop counting in fives.

I didn’t change.

I fooled you all.

For a while.

That was all.

Truly, Madly, Autistically


When I like you, I really like you.

At first I keep you at arm’s length, and make sure you’re sure and I’m sure.

I slowly reveal little snippets of myself: a bit of weird here, a bit of mad there.

I wait to see if you back away – I give you a “cooling off period”. I don’t like to impose myself on people. You must make the moves: you must let me know you like me.

You see I can’t handle the grief of losing a friend.

If you’re still there, I start to care about you. I begin the terrifying journey of starting to trust you. I only have so much trust and it’s hard to give it away. I need to know you can cope with the power of my affection.

It takes a long time for me to make a friend and I lose many along the way, but those who stay are special and I think about you and hope you will always be there.

I don’t always know what I can give except my deepest loyalty, the truth and genuine affection.

Thank you to those who are still there allowing me to like you and love you in my fervent way.

You have my trust.

Please May I Have a Bit More Nothing?

I’m still. But I’m not still. There’s a rhythm playing on my breath. I stop it and catch it in my teeth. The toes of my right foot play the beat that matches the rhythm.

I circle my forefinger over my thumbnail and absent-mindedly dig the nail into the finger as some sort of response. There’s a continuous ongoing conversation between bodyparts and I don’t know who’s in control.

The wind is cold and unfriendly today. I feel its hostility as it antagonistically flicks my hair into my face, into my eyes. I don’t like it. I feel I am fighting to stay put.

My throat stings a little from a bonfire perhaps faraway, perhaps no longer burning. It hangs in the air. I’m nauseous and irritated.

The seagull on the roof thinks it’s funny. He’s laughing at me. The sparrows bicker in the hedge.

The voice in my head is reminding me about the grocery delivery still to come, the fridge to clear out, the washing to hang out, the list of gardening jobs to be done. My heart pumps a little too fast and my stomach reacts to the rush. I breathe out heavily to blow away the stress bearing down on me because of my own demands on myself, and my confusion about what is most important.
When do I walk the dog? Do I have time for/ do I bother with lunch?

I’ve done nothing again and yet I’m never doing nothing. I sit and stare at the empty page where I was supposed to write a list. And yet it’s not empty: it’s patterned and creased and dirtied by gardener’s hands.
I wish everything would stop and stay stopped long enough so I can find peace. Deep down I know I am quietly out of control and I bite my tongue hard.

Maybe I look still.

Still would be nice.

The Assessment Fear

It’s now 27 days until my assessment and I’m not sleeping well or getting through simple tasks in the day. I’m visualising the assessment day and how I will handle it (badly – but that’s a whole other blogpost!), and I’m cultivating a new set of fears.

Fear Number 1 is that the psychologist will not find enough evidence of Asperger’s Syndrome and will say that I have some typical traits but not enough and tell me I have social anxiety disorder instead.
In the last few years I’ve gone from thinking there’s probably autism in my family’s genes but that I don’t display the traits myself, to thinking more recently that I possibly do have some traits, to now realising I have many traits and I just wasn’t looking in the right places (this was partly due to everything I’d read being about males with AS conditions). In the past month I have become 100% certain that I struggle with an autistic spectrum condition – probably Asperger’s, but I worry that if I had so much trouble recognising it, it may not be fully recognised by someone else.

What if the people I need the support from take the psychologist’s word over mine? What if I have to go back to pushing myself to the point of insanity to be someone I know I’m not? It would be like the light at the end of the tunnel being extinguished and me being trapped in darkness again. I don’t want to go back there.
I keep searching for an analogy so that people outside my head can understand how this feels. The only thing I can think of is imagine being gay and having to stay married to someone of the opposite sex. You’d want someone to say you don’t have to be someone you’re not. It’s clear you were not made that way. But what if you weren’t allowed to be gay? We all need to be allowed to be who we are.

Of course I know that anyone worth their salt will reach the correct conclusion.

Won’t they?

Fear number 2 is that with an official autistic spectrum label I will now be faced with Asperger’s as an excuse. Not for me but for other people. What if my opinions and emotions are no longer seen as legitimate? What if people misunderstand me and instead of getting to the truth and letting me explain they shrug and release a small puff of air and make a mental note that it’s just my Asperger’s: I can’t help it? Will my highly emotive arguments in the future be dismissed as a ranting incompetent brain? Will people’s own failure to understand me conveniently become Rachel’s inability to grasp other people’s feelings? ‘Oh don’t worry about her – she’s autistic, you know? She doesn’t know she’s hurting your feelings.’
It genuinely upsets the crap out of me that autistic people are so often seen as self-centred, empathy-void machines (that’s another whole other blog post!). In my opinion it’s not true and it’s wrongly depicted by those who observe but don’t live in the AS world. My empathy bucket is flipping massive, I’ve have you know. I protect people from things I think will hurt them all the time. I also take on a lot of pain from observing other people, and I physically suffer for it. I may not always say and do the right things but I am thinking of other people all the time.

Fear number 3 is about others. I’m concerned for my loved ones. How will they cope? Will my husband be scared to ask me to do anything remotely challenging again? Will he try to absorb too much stress to protect me? Will people worry that they can’t say certain things to me anymore? Will my family worry that being themselves will impact negatively on me? Will they be embarrassed by the label? Will they say they preferred things as they were? Or will they do nothing and I’ll still have to pretend? I don’t want to use Asperger’s as an excuse for bad behaviour and I don’t want my family confused about what is unreasonable and what is excusable but there are times when even I don’t know how much of a git I’m being. Or how much of a git I’m not being!

It’s daunting and it’s filling up my head and I know I’ve not been great company recently, but it’s not long now.

All in all I know this is the right thing to do – it’s really important to me.

(And we’re all gits sometimes anyway. With or without excuses)

Why the Label?

shutterstock_169863227What’s become clear to me in the last few days is how this is all about coping, and how each individual person wants or needs to cope. If a person with an AS condition has ongoing support and understanding from someone close then the chances of coping are much better. A greater need to rest is a prime example and having a family/partner who accepts that need – and not just accepts it but understands it. It’s important when others rely on you that you should be understood.
My problems have caused a lot of anger. Why on earth should one half of team parent in the Carter house be rushing around while the other is lying on the sofa? I’ve struggled for years with the enormous guilt my fatigue has caused me. So I don’t allow myself to rest and I’m regularly irritable. I cope less and less; I drop things, I bang my head, I forget things. I feel gradually more and more overwhelmed and out-of-control. I begin to rage or cry. When there is hidden exhaustion and confused feelings things will surface eventually. The wrong thing or the wrong person will suffer. These feelings must be coming from somewhere therefore it must be the current situation that is the problem. And the current situation gets the blame.

If the person with an AS condition has fewer or less debilitating traits then the chances of them coping are much greater. The likelihood of coping for some of us hinges on an assessment but for others who can self-diagnose or cope with their own goals or have enough understanding then the official assessment/diagnosis might be just something else to put themselves through. I would guess that doesn’t stay the same for some though. The need for diagnosis and support probably changes. Right now the things I can/do or can’t/don’t do that upset me about myself need ordering somehow. I’m not coping and never have coped with my guilt and my failings. I’ve never understood just why I find so many things so bloody hard. I care about why and I care about not fitting. I want to explain myself to my family and not just in an “I’ve read a book so it must be right” kind of way. I want someone from outside to listen and tell me that I’m okay – because the non AS version of me is simply not okay – and help me believe I don’t have to be something I’m not. I don’t think I can do this on my own. No, I know I can’t. And that’s the difference between me and the people who don’t want a label: I’ve had so many people say recently ‘I struggle with this too’ ‘I struggle with that too’ and they point out that they don’t need a label and they are happy with their individuality and they say they’re coping or that those traits don’t make someone on the autistic spectrum. Well that’s fine and that’s them (unless they’re kidding themselves!). Maybe they have some AS traits, maybe they don’t. Maybe they want to investigate them, maybe they don’t. Maybe being happy with yourself and getting on with being you is the key to coping.

But I’d like a little bit of guidance because I’m not getting on with being me. And I think a calmer version of me who isn’t at war with everything will be better for me to live with. I do actually want to change in some ways. There’s a slightly tweaked version of me in there somewhere that is waiting.

I don’t want the label plastered across my chest in massive letters every day for all to see, I want it tucked into my pocket for me to rub my fingers over every day and find some comfort.

Circular Cage

In my head are hundreds of things I want to do. I can’t prioritise or order them. I can’t even stick to my own lists.
You can often see me walking in and out, up and down, round and round as if I am trapped in a circular cage. This is because I have visualised everything I need to do and everything is calling to me at once.
When I finally choose a direction it is often the wrong one.

Reluctant Soldier

You’ve probably lost count of the times I’ve told you I’m struggling/having a bad patch/need a break/not coping/want to hide in a dark corner.
What you won’t know is I’ve lost count of the times I haven’t told you because I can’t bear to hear myself say it, to make it real, to do this to you, to risk losing you.

A pain rises from my chest, through my throat into my tearducts. The longer and harder I try to stop it the stronger it becomes.
I try to find a space to release the pain.

I’m fighting. Always fighting. But nobody knows.
All around are the battles I’ve lost. Battles I didn’t want to fight.

Maybe some day we can talk about the ones I’ve won and you can be proud of me.

Last Night I Dreamt of a Rainbow Umbrella

shutterstock_169863227 So that it – it’s happening: in April I will be having an autistic spectrum assessment. I don’t want to wait the estimated two years for a GP referral (that’s assuming my GP would even give me a referral), so I’ve booked a visit from a psychologist who will come and spend the day with me in a month’s time. It will cost me, but not anywhere near as much as one of the quotes I got from a clinical psychologist for about £4,000.

I don’t need help at work (I can’t hold down a job and that’s that as far as I’m concerned) and I don’t need benefits, I don’t need any special concessions from society but I do need some personal help, so for me an educational psychologist’s assessment is perfect. There is still always the chance she will disagree with me and say I don’t have Asperger’s but I do totally believe she will agree that I don’t have a typical brain and that some of my behaviours and problems fit onto the umbrella of autistic spectrum conditions somewhere.

I’ve already filled in some forms, which have held me trapped in a strange kind of self-analysis bubble for the last couple of weeks. Much of it has been quite useful and made me feel a lot better about myself although some of the searching for an honest version of myself is a bit distressing. I really do do things that autistic people do! I really do have extreme ways of reacting to things. A lot of things I’ve pretended are choices over the years are not choices but things that have been imposed or self-imposed because I have no choice but to escape the onslaught of unbearable stimuli in normal society. And, despite years of trying very very hard, I’m not normal in the way 99% of people define normal. Maybe things would have been different if I’d tackled all this years ago and help had been available… who knows… But there’s also humour too: plenty of funny things about myself that I knew about but didn’t know why. It turns out “nose of a dog” for instance – that Richard calls me because of my overwhelmingly strong sense of smell is an autistic trait. Screaming with frustration because ‘the effing dustpan and brush are not where I effing left them, and I hate it when people move things. I need to know things are where I left them!’ is also an autistic trait. My obsessions with symmetry and balance and straightening things are to do with the way I visually try to order things, and my regular crying at unfairness on the TV – even when ‘it’s just a film, Mum!’ is to do with my over-sensitivity.

A lot of the things I have got supermassivelyangry about over the years are because of being overwhelmed by the world I don’t fit. I don’t know if anyone else around me has noticed but I have noticed that I’ve been less angry recently. I am aware of what is happening and, to a large extent, why. I’m no better at coping with the world and my sensory overload but I am better at coping with myself. Today in the supermarket I knew why the other shoppers were making me feel stressed and I knew why I was walking past things I wanted to buy. I needed space. I needed a bit longer to think than other people. I feel crowded very easily.

In the evenings I still find the combination of family voices and TV sounds too much to bear but I can stand still and calmly say so instead of wondering why everything is deliberately being so awful to me. Knowledge brings an understanding that can give comfort and control and not only self-forgiveness but forgiveness of life and of other people. Other people can’t help being in a different world where colours aren’t so bright and noises aren’t so intense and I must forgive them that! Other people’s lives must be so boring. No wonder they sleep better than I do at night!

Now I’m armed with knowledge about some of my troubles they don’t seem so much like troubles anymore. It’s a bit like worrying that your lawn is blue when all the neighbours’ lawns are green. Well, hey, what do you know: mine was planted with blue seed – there’s no way it could have grown green – I was actually supposed to have a blue lawn! All that worrying for nothing…

But I don’t want other people worrying about my blue lawn or trying to help me make it green, and I don’t want the kids going on about how I should have a green lawn because ‘all the other kids do’ so it’s best they know about my blue seeds too.

Earlier this week, I tried to have a family chat about my forthcoming assessment. Even though I’d mentioned the likelihood that I have Asperger’s to our eldest daughter, and left books lying around and had conversations with my husband Richard when the kids were about, I wasn’t sure what they’d picked up on. And I wasn’t sure overhearing stuff was the best way to find out about things. It’s been difficult to know where or when to start and how much to tell them all.

Dinner was going at its usual crazy pace. The 19-year-old was eating like she was in a race, the 9-year-old was eating like she had a plate of rancid fish in front of her, the TV was on, conversation was disjointed.
‘I’m getting assessed for Asperger’s Syndrome soon. Someone’s coming to the house in a few weeks.’
The 9-year-old wanted to know if she could get assessed too. The 19-year-old finished eating and left the table. The conversation changed.

Oh well. I tried.

I’m in limbo right now. I’ve made my decision that I have Asperger’s but somehow I want that seal of approval from someone who’s been working with the autistic spectrum for years; someone who has a badge that says she knows her stuff and can give a definitive, informed, professional opinion. I think this option should be available to anyone that wants it and not just those of us who can scrape together the eight-hundred-ish pounds needed for an educational psychologist or the thousands of pounds needed for a clinical psychologist. I can only imagine what the two-year wait would do to someone stuck in a more difficult lifestyle than my own.

Richard said a couple of days ago that I should stop over-analysing it all: ‘nothing’s changed,’ he told me, ‘you’re still you.’ But I can’t help wondering what effect all this will have on the family and what it might be easier for me and us to do as a result and what I will have to accept I will always find difficult. There is of course some acceptance of – some reluctant resignation to the fact that I will never totally fulfil the role expected of me in today’s society and I will never be able to stop comparing myself with other women and wondering who I am letting down or holding back or disappointing in my family. It has totally consumed me.

Last night I dreamt of a rainbow umbrella. I was walking in the rain. I don’t like walking in the rain usually. I’ve always thought the elements have it in for me. But in last night’s dream I had a large strong umbrella. It was striped with all the colours of the rainbow and birdcage-shaped so that the spokes went down and over my shoulders instead of out and pointing at people. I felt safe and I felt dry. And best of all I knew I wasn’t bothering anyone.

Here’s a lovely little video by the National Autistic Society, called What is Autism?

And here’s what they say about diagnosis/assessment: Clarification is important because, whatever other condition may also be present, when a child or adult has an autistic spectrum disorder, this has a major effect in determining the needs of the person concerned. Providing the right kind of help and services is essential for the person’s future progress and quality of life. The right diagnosis and the right help also makes life much easier for the person’s family.

You mean everyone doesn’t shrug?

I was standing in the supermarket queue today with my husband and our 9-year-old daughter.
I’m a big fan of queues. It’s one of the things I like best about being British. Queuing is the right and fair thing to do and we usually do it well. A couple of weeks ago when I was standing at the fish counter being all polite and patient with my trolley, a late-middle-aged woman walked right in front of me and got herself served before me. I was furious. I’m still drafting a letter to my MP in my head demanding that all queue jumpers be deported regardless of age. Seriously though, if we suddenly stopped queuing I wouldn’t cope. It’s one of those social rules I get and follow easily.

But getting back to today: While we were waiting in the checkout queue, I thought about my new awareness of my difference. I had a good look at everyone around me and I’m pretty sure no one but me was standing with their shoulders all sort of squidged up, and a bit shruggy and self-protective with their arms pulled in stiffly by their sides. Everyone else’s shoulders seemed to be down and rounded with loose arms. Is this what it’s going to be like? I thought. Am I going to keep thinking about how I’m different from everyone around me now?
Already this morning I had thought about my overreaction to the empty almond butter jar: “WHAT AM I GOING TO PUT ON MY TOAST NOW?!?!”
That’s because I have Asperger’s?
Is it?
I don’t know.

I had also thought about how Mum always says how I cried to be left alone as a baby, and was the only one who just wanted to sleep, whereas my sisters cried for attention.
That’s because I have Asperger’s?
Is it?
I don’t know.

In the car on the way to the supermarket, I had to close my eyes and shut out one of the stimuli making an assault on my senses. The radio, our daughter’s incessant chatting, the movement of the vehicle, the bump of the gear changes: I felt exhausted.
That’s because I have Asperger’s?
Is it?
I don’t know.

Part of it is because I’m tired and emotional, I expect. I felt overwhelmed again last night. And so, so emotional. I’ve spent days looking up psychologists online, trying to find which ones are close enough to me, which ones are clinical psychologists, which ones do autism assessments in adults and not just children, and waiting to see which ones will answer my emails and questions. It’s time-consuming and confusing. But not as confusing as the chaos in my brain. I’m analysing everything, and thinking about the future and the past. I got into bed last night and cried my eyes out.
Who am I?

I don’t regret this, I don’t regret any of this. I decided earlier that a good metaphor would be the feeling you might get if you were about to get married, and a good friend revealed to you what a completely deceitful, cheating, dishonest tosspot your future spouse is. There would be initial pain and lots of rearranging of your past and your future in your head but eventually you know it would be the right thing to do, and you would be better off with a new plan.

A few people have asked me if I really need to get diagnosed. And the answer for me is Yes. I want someone who works with Asperger’s every day to look at me, listen to me and recognise me. If it stigmatises me, so be it. The best way to describe it right now is I feel like I have windows but I can’t see through them yet. They need cleaning to clarify what I’m dealing with.

After a walk on the beach with Richard and our 9-year-old I came home and did a bit more research. I filled in an austic spectrum questionnaire and got another high score on a website written by someone who works with people on the autistic spectrum. She writes:
My view of Asperger syndrome is that it is simply a different way of thinking and thought processing. Asperger syndrome only affects a small part of the brain and, similar to dyslexia, does not change personality.
More at:

I found it reassuring and self-validating in a way.

I’m still me. I always was.

But please don’t take all the almond butter!

The Week I Completely Rewired My Brain

shutterstock_145104232Just twelve days ago I was normal.

I suffered from anxiety disorder and confidence problems, and being organised was difficult and even painful, I got easily upset when someone disagreed with me, I had issues with noises, the telephone, smells, and surprises….
But otherwise, pretty normal.
In other words I was neurotypical (ish)

Or so I thought.

And then I caught Asperger’s Syndrome.

It all started when I wrote a blog post about anxiety. People on the autistic spectrum, or with children on the autistic spectrum, said they related to the piece and found it helpful. I didn’t know most of these people but seeing them share my blog post amongst themselves was nice – interesting and a little bit curious, but nice. You see I’ve always felt a sympathetic connection with people with Asperger’s Syndrome. I’ve always understood the feelings of being overwhelmed. I’ve never been on the autistic spectrum myself, you understand, I have just been shy and anxious so it’s different for me. But I saw a connection and felt a kind of outsider’s understanding.

Until the last few days, that is…

The same day that all this appreciation of my anxiety blog post was happening, a friend sent me a message. She was a little hesitant and chose her words carefully but she wanted to know if I’d thought about whether I could have Asperger’s Syndrome.

This is what happened in my head:

Firstly: Me? Asperger’s? No. I know about Asperger’s. I’ve studied it with the Open University. I don’t have all the problems associated with Asperger’s.

Then: Answer the question, though, Rachel. Have you thought about it? Well, yes, I have thought about it. It was brave of her to ask, so I won’t come across as insulted that someone thinks I’m autistic, I’ll just say, yes I have thought about it, and no I’m not autistic.

And then: Yes. I have thought about it, but how do I know? How do I really know? This person who sent me the message has known me for ten years. She’s read a lot of what I’ve written and sees how I interact with others; she says she’s been thinking of saying something to me for a long time. This isn’t a one off. She is also “a bit of an expert” on the subject. Let’s just get the book she recommended. Let’s see if we see any or enough similarities.

So I got the book and I read the book. And I spent some time alone in my own head for a day or two before I admitted to my husband what was going on.

When I spoke to Richard he looked doubtful and possibly a little irritated. But then he’s always accusing me of misreading his face. His reaction was definitely a little cagey and of someone unconvinced. It struck me perhaps he didn’t want a wife with autism. So I kept the rest of my thinking to myself. And I read another book.

And that’s when I started to get some symptoms of Asperger’s. And then some more. And then some more. Until I had full-blown Asperger’s Syndrome.

I withdrew for a few days – not completely, but I became a little trapped in my own thoughts, a little slower than usual and I allowed myself the very unusual treat of sitting on the sofa reading and ignoring everyone. I don’t usually allow myself such a luxury, but this was important.

The more convinced I became that I did indeed have Asperger’s afterall – that I am an “Aspie” – the more I wanted to talk about it with someone. But I didn’t know what to say or to whom. Eventually I emailed my mother and my sisters and introduced them to the idea. I’d say they were initially unconvinced and I was left wondering whether I should have kept my thoughts to myself. But to me this all felt massive and so, so important too: a life-changing discovery; a new way of looking at my life and myself and my past, a new set of challenges perhaps and maybe a new set of achievements now I was armed with all my new knowledge and insight.
I wanted to tell my family how I needed them to agree with me and support me but they hadn’t read what I had read, they had no idea what a success I had made of hiding my symptoms for years, and all the acting and performing I’d achieved in order to appear normal.

The mixed up feelings and emotional highs and lows brought on a lot of my symptoms: I had restless nights and struggled to get up and get moving every morning for a few days (even more than usual), I stopped doing yoga, took hours in the shower, a little habit I have of counting to ten, even though I don’t want to, played up big time, my stomach ached and I’d get to the end of the day feeling I’d achieved absolutely nothing. I felt physically shut off from everyone else, I felt totally alone in both a good and a bad way. It’s easing a bit now to a more usual level but I’ve been jiggling my jaw side to side a lot more than usual and playing rhythms with my teeth (Gawd, that would annoy me if someone else was doing it!). I’ve been super-emotional and sensitive and even more forgetful and overwhelmed by basic tasks than usual. I’ve felt small and young and upset revisiting painful memories of times when people misunderstood me. And while realising that it was probably due to Asperger’s is some comfort, the memories are still painful.

It’s all been a bit of a shock. I’ve been doing an awful lot of self-indulgent navel-gazing for over a week now. It’s been an enormous thing to take in. I’m not ashamed to say I have been completely obsessed and have made it a bit of a project. (I do love a project, though anyway!). I can’t stress enough how life-changing and significant this all feels to me.

I’ve spent my whole life coming up with excuses, reasons, past traumas, life experiences for every difficulty I have or have had fitting in to this world. I’ve put things down to shyness, to my creative personality. More recently I’ve simplified everything by just trying to accept that I’m a bit of a hermit – it’s no big deal. Only it is a big deal. It’s a very big deal indeed. It’s my whole life and I’m not who I thought I was. Well I am, but not in the way I thought I was.
I’m not just rubbish or lazy: I’m confused by what is expected of me.
I’m not just quick-tempered for no good reason: I’m overwhelmed by smells, lights and noises that don’t overwhelm other people.
I’m not just a rude, unsociable git: I actually can’t talk sometimes because my brain is wired differently from more sociable people’s brains.

So I’ve been reading. And reading and reading and reading: Online stuff, e-books, paperbacks; blogs and biographies by Aspie women, books by experts. Within all this information, I’m re-reading information that I read a few years ago and reading it from a different angle. I’m not reading: “People with Asperger’s might have this, that and the other trait or difficulty”, no, I’m reading: “You (I) might have this, that and the other trait or difficulty”.
With the advice of the friend who first got me think about this – all of those twelve long days ago when life was so different, I am learning to look for information specifically about women on the autistic spectrum. One of the reasons I decided I wasn’t an aspie all those years ago was because so much of the information was based on initial research done on boys. It’s different for girls though. Some of the men’s and boys’ traits don’t present in women and girls.

Now I know why it is that when things go wrong – however small – I can be inconsolable; why when I’ve chosen to wear a particular pair of socks and I can’t find them I feel like a supernatural force is trying to ruin my life; why when someone interrupts me mid-thought or mid-action I have a meltdown and can’t get back into what I was doing; why I am terrified of the telephone and think it sounds like someone screaming so loudly that I want to hold my hands over my ears and cry. I know now why I am always running lists in groups of 5 in head and repeating them rhythmically, why I’m always counting to ten to get a job done quickly, jiggling tunes with my teeth, and biting my lips and the inside of my face. I know why sometimes when I am out in public I’ll shove my hands into my pockets and freeze and forget to move or talk, why I’m always looking and listening for danger, why I find I want people to hurry up and finish when they’re talking to me, why I’m distracted by light and movement.
Why I can never ever, ever relax at all. Ever.

I don’t have all the typical traits of Asperger’s. For instance, I think I am very aware of other people’s feelings and I think about other people all the time. And I don’t have an obsession with a particular subject such trains or numbers or lists of facts (but I can obsess about something so much so that I burn the dinner and forget to get dressed for a while and then I’ll switch to obsessing about something else). And I believe I do understand social norms. I perhaps just don’t have the skills and I don’t enjoy them. Basically I choose to not get involved in social events. I also have a sense of humour and appreciate others with a good sense of humour and I thrive on sarcasm. I think it’s likely that a lot of “Aspies” will say they don’t match particular traits.

I’ve thought a lot about my childhood this week and how I used to play. I never enjoyed things that involved a large group. I didn’t feel that it was because I didn’t understand or that I was excluded, I simply didn’t enjoy group activities. I preferred small groups or one-to-one games. I didn’t see any point or any fun in charging up and down screaming. I’ve thought about how I could never bear to leave the house and go to school, and how I had stomach aches day after day for no apparent reason. I’ve thought about how for years everyone told me I was too quiet, should join in more. I want to go back and hug that little girl and tell her she can be quiet if she bloody well wants to; she doesn’t have to fit someone else’s idea of how to behave.

I’ve thought about traits I clearly do have and traits I believe I don’t have but in the middle I’ve noticed things I’ve been in denial about. For example: I am unreasonable when people disagree with me. I always have been too quick to feel that a different point of view is somehow offensive and insulting to me. I feel a physical anxiety as if that person has let me down somehow – especially if I know them and they know me. The intelligent, reasoning side of me understands wholeheartedly that everyone is different and sees things from a different perspective but it is perhaps the autistic side of me that will not and cannot cope with people not seeing how I must be right! I’ve read things, I’ve thought about things, I have good instincts, I have a great sense of justice. Therefore I must be right! Right? I’m now working on the premise that I may indeed be right and people may indeed be letting me down by having another point of view but they are not doing it deliberately (although it really feels like they are trying to upset me!) and it is not my problem. It’s a start. I’ll work on the rest…
Another thing I’ve been in denial about are my quirky little repetitive habits and ritualistic daily routines. Now I’m watching myself more closely I see how I line things up, how I do things in a particular order or a certain number of times. I looked at my jewellery box recently. I’m not big on jewellery – things rattling around or moving against my skin irritate me, but I do like stud earrings. I have compartmentalised my earrings into flowers, birds, insects, natural shapes and modern shapes. That’s probably not something everyone does. But it’s not something I’d analysed before.

Dissecting my regular day and observing myself as if from the outside isn’t easy, but I’m having a good go and while some of it is a little unsettling a lot of it is also amusing. I can see how a lot of what has become habitual is unnecessary and is slowing me down. I realise I am less comfortable with change than I like to think and I’ve been using routines for comfort. Like Liane Holliday Willey, the author of Pretending to be Normal: Living with Asperger’s Syndrome, I have had no trouble self-diagnosing myself and can see how I sit comfortably within the spectrum with my little collection of quirks and struggles.

The next thing to think about is whether I can put myself through the formality of an official diagnosis and all the anxiety that will cause me, or whether my self-diagnosis and conviction – and the conviction of those who know what they’re talking about, is enough. I suppose at 44 years old, one might question why I would need a diagnosis or why I have not been diagnosed before – All this time and no one picked up on it?! Maybe it’s all in my head? Well, perhaps it’s precisely because I am 44 that it hasn’t been picked up on. I’ve had a good long time to normalise my behaviours. None of my behaviours seem odd to me and I’ve not thought about them too deeply before. It’s only when I try to fit them to the status quo that some of them seem a bit problematic and many more I have learned to disguise.

As this looks like this is a family trait it may be helpful and useful to those I love for me to be formally diagnosed. And there will always be some for whom a self-diagnosis will not be enough – they will believe it’s all in my head or I’ve decided to give myself Asperger’s because it’s my latest obsession.
For now though: more reading and more coming to terms with everything.

It’s still very early days and I have a lot to discover, but I guess I’ll never know for sure what about me is unaffected by autism; what’s learned, what’s genetic, what’s neurotypical in my behaviour, and what is controlled or interrupted by untypical brain-wiring. And that doesn’t matter because I still want to be me, regular me living my life and having legitimate thoughts, feeling and opinions. But just thinking I can file some of my problems, my unproblematic quirks and some of the things that cause other people concern under “Asperger’s” is already making me unbelievably excited, and for that reason I’m glad I have the wiring a bit different in my brain and I’m going to stop pretending I don’t.


Joined up thinking 

I’ve got a real “the Nation didn’t speak” kind of feeling today.

It’s more of a “the spin spoke”, “the lies spoke”, “the laziness spoke”, and “the ignorance spoke” mix of feelings. 

I watch quite a lot of TV. I like ordinary stuff and as well as gritty dramas, I like observing real people and watching their reactions to things. I watch a lot of BBC news and I see how people are being fed certain messages and information and I see vast swathes of crucial stuff that is completely omitted while pointless banal stuff is repeated until we are convinced it means something.

I watch a lot of what I call well-produced crap on TV and I know millions of other people watch it too. 

People are not as autonomous as they like to think they are; they are lazy and they ignore information that doesn’t sit well with them. We often grab at stuff that relieves our own guilt. 

Most of us don’t see how politics works and is completely connected to every part of our lives. Most of us aren’t given enough reasons regularly or consistently enough through the media to see how we are all connected and responsible socially or to give a stuff about what we are doing to nature and the planet and its fragility. 

Most of us weren’t given the kind of education that gives us the opportunity to bullshit spot or seriously question systems of people in powerful positions.

Today’s election results don’t surprise me. I am not shocked. I am not taking to my bed in despair. I hear the things people say, I knew it was coming. I continue to feel disappointed that it’s all about personality, power, selfish wants (and not even needs on the whole), short-term rewards for only a very few and lies, lies, lies and more dammed lies 

Before you vote… 

I’ve said it before, and I’ll say it again: I think most people don’t actually think what they think they think. They get stuck in tired discourse and get too lazy to revisit their brain and think about why they’re saying what they are saying. Patterns of words tumble out like quotes learned for an exam and not as the result of any proper contemplation. 

Challenge your own jargon and make sure it really is relevant and original, really makes sense and isn’t just a bunch of rhetoric. 

Think about the future. Think about where you want to live – as a whole -and not just your own individual selfish wants. If you’re thinking only about yourself on the day you vote, you’re probably getting it wrong. If you can’t give good, original reasons for the way you’re choosing to vote, you’re probably getting it wrong. If you can only give negative reasons for the way you’re choosing to vote, you’re probably getting it wrong. 

Middle Ground

Serious question:
How do you cope with, spend time with, tolerate, care about, love – or even be pleasant to – people who don’t care deeply about the things that you feel really matter in life, and who instead have what you see as more selfish or ill-thought-out preferences?
I find it pretty much impossible to give of myself to people when I discover or suspect they might be right-wing or have views against my own instincts about kindness and society. The “each to their own” thing simply doesn’t work for me. I find myself thinking how my position on society is about caring for our most vulnerable and protecting our planet for the future, and anyone who isn’t thinking like that is not simply offering an alternative viewpoint but is actually selfish. There are alternative views about all-sorts that I can cope with (ask my sister Sophie​ about her music tastes or my husband about his TV and sport taste!) and I am happy to accept that most people wouldn’t want a life as quiet as mine, or to have a family, or to have a dog, or eat the same food as me, watch the same TV programmes, etc, etc, etc… but why would you be right-wing? And why would you criticise socialists – who only want the best for everyone – particularly the more vulnerable members or society?
When I am nice to someone, when I smile at someone, when I talk to someone, I mean it. It’s about caring. Why should I give so much of my genuine self to people when they really are only just on-the-surface pleasant but not really deeply thinking about the wider world or the impact of their actions long-term?
Surely I don’t have to like them or give of myself to them… ? I feel false when I do. I feel dishonest, and I feel I’ve given something I’ll never get back.
I don’t even think it works the other way round. I don’t think people with opposing views to my own actually care enough for it to work the other way round.
Put simply, I just don’t want to be friends with or spend time with people who are right-wing. I don’t like them – however nice they can appear. I just don’t think they think deeply enough for me. And that sounds so arrogant but I don’t feel arrogant I just feel how can you think deeply and not live accordingly? You can’t.
I’m torn between thinking it’s a problem and thinking it’s actually reasonable. I’m not unpleasant, I don’t cause wars, I just want my energy and my genuine warmth to be spent wisely. Maybe it’s because everything I do is so very very real that I use up my communication energy quickly and I’m tired of shallow people.

I’d rather know a tiny number of gentle, humble, caring people than hundreds of people I don’t understand. And yet I see most people aren’t like that. They are happy to have many acquaintances and let their opposing opinions wash over them.
Maybe I simply wasn’t born with a middle ground…

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.