On autism, masking, hiding and acceptance

I don’t know when it started. The knowing I wasn’t good enough, the hiding my autistic self away, pushing her down.

When I was little, I was a generally a happy child. I was happiest alone creating worlds in my head, but I’d play with others if they were there. I came from a family where time spent alone, reading, running round in circles for hours or daydreaming was acceptable. I went to a small school and had friends.

But as I grew older, I felt a creeping sense of shame about who I was and being different.

Maybe it was being told off for doing something wrong when I didn’t even know I was doing something wrong. The teacher who made angry scribbles on my on my book because she said I wasn’t paying attention. The other teacher who threw my exercise book across the classroom in frustration.

Maybe it was when I was bullied for the first time by other kids They wouldn’t let me pass and threatened to hurt me. I became scared of Other Children . I wanted to hide from them.

Maybe it was the time I noticed I was alone in the school woods. My friends had gone somewhere and it bothered me for the first time that I was alone. Going in the woods was a treat but nobody wanted to play with me.

Maybe it was when I started a new school aged 9 and couldn’t make friends. Even the other social pariah wouldn’t play with me.

Maybe it was all of the above and many other small incidents long forgotten. I did know that the older I got, the harder it was. Social situations became more complex. Confusing. Other children could be friendly and then suddenly turn mean. I didn’t want people to be mean to me.

And so the hiding of my autistic self and the masking began. It wasn’t deliberate. I didn’t sit down one day and think “today I’m going to be like everyone else”. It was more a search to be accepted. A desire to be good enough.

Masking in some respects is easy. I don’t share my deepest self easily. From a young age I kept things to myself. I was stung by a bee at the age of 3 and didn’t tell anyone. My secret play worlds remained secret. It was just I gradually kept more and more of myself secret. And as I did so, I became more and more ashamed of myself.

Another new school at age 13 and more bullying made it worse.

I became almost two people. There was her. The person I was ashamed of. The person I was at home, who still played with toy cars, who lived in on an imaginary planet in her head, liked computers and trains, obsessed about obscure pop stars. Then there was socially acceptable me. The person I was in public who tried to like the pop stars everyone else liked, who tried to be indistinguishable from the others, not be a nerd.

I copied my cousins, girls at school, people on TV. They instinctively knew what to do in social situations. I didn’t but I tried to learn by imitation. I thought if I got it right, I’d be accepted.

I thought maybe if I looked right I’d be accepted. I made the rounds of the local hairdressers clutching a magazine, convinced if I looked like Suzanne from the Human League I’d be accepted. None of the hairdressers could make me look like Suzanne from the Human League.

I didn’t give up. I dyed my hair. I stuck it together with hair gel from Superdrug that turned it green. I permed it. It was the eighties. I looked like a poodle but it was quite low maintenance so I liked it.

I tried to learn to put on make-up. It ended up half way down my face. I tried to be fashionable. I’m not interested in fashion, but I was convinced that if I looked right I would be accepted.

It surprises me when people say fashion is fun. Fashion isn’t fun to me, it’s camouflage.

I often got it wrong. Other girls seemed to effortlessly get it right but I often failed. I didn’t know why one thing could be trendy and another thing, that looked almost the same, be uncool. I always unerringly picked the uncool thing. I didn’t understand why friends laughed at my outfits. I learnt how to do self-deprecating humour and laugh at myself.

As I grew older. I discovered drink helped me feel more relaxed, less anxious about myself. It turned the noise of the world down. When I drank I could go to parties and nightclubs. I don’t actually like parties and nightclubs but when I drank I did. Mainly because I could get more drink there.

I felt like a real wild child but I was just a drunk student in a tacky nightclub. More importantly, I felt I belonged with all the other drunk students. The inherent difference in me was pushed below the surface.

I thought I’d finally found the solution. Maybe this time I’d left the awkward, lonely, weird girl alone in her bedroom behind for good.

But she was still there. When I shut the door away from the world, she tried to get out. She came out in drunken meltdowns that ruined friendships and romances. I added more drink to subdue her.

I tried to run away from her. I went as far as I could. to Australia. She came with me. I moved into a party house because I thought I was a party animal and it was a disaster. The whole house turned against me because of my weirdness, because of her, because she couldn’t cope with too many people crammed into too few bedrooms and the noise of the house. I spent many hours walking around a sweltering Sydney, aimless, lonely destroyed.

I thought I could go to the end of the earth and outrun her but I couldn’t. When I came home, she was still part of me.

I didn’t give up. I kept trying to escape her. My twenties were all about running away from her. I seemed so ‘normal’ but I struggled to keep it together. I was frequently depressed and relied on drink to socialise.

It’s not surprising eventually I had a breakdown. I couldn’t go on. I think my autistic self shut down completely. She couldn’t go on sustaining all the fakery. It lead to bleak times, severe depression and various psychiatric diagnoses.

But all the ensuing excavation of my deepest self to find the cause of my illness did not lead to the discovery of my autism.

She laid so deeply buried, it did not occur to me to tell the professionals of her existence. Although the mask was off in that I could not control my behaviour and act normal, I was not able to understand the reason for it and it was put down to personality disorder and depression. I took refuge in an interest but they didn’t know how deep it went. I also kept drinking.

Eventually drinking got too far out of control, became an addiction. Sweats, shakes, a bottle of vodka in my bag, alcohol for breakfast. I wanted to drink all the time and when I wasn’t drinking I was planning my next drink. I am glad and I am lucky that I stopped drinking. It was a horrible life.

But when I stopped, I lost the thing that kept my mask together. All the things I had thought about myself were wrong.

For example, I thought I liked parties. I didn’t. I liked drinking at parties.

When I think of going to a party and having a drink, I am filled with anticipation. I imagine a cold bottle of wine, condensation on the outside, the pop of the cork, the glug glug glug as it is poured, the blessed relief of the first taste, the euphoria, the slipping into oblivion, the not caring.

When I think of going to a party and not drinking. I feel dread. The event hangs over me like a guillotine. I’ll stand on the edge of a laughing group, pretending I get the joke. I’ll hide in the toilet multiple times to escape. I’ll make tortured conversation and just really really want to be at home. The best part of a party is coming home afterwards knowing it’s over.

I thought I had social skills. I was horrified to find that, without alcohol, my social skills had not improved since my teen years. I sat in groups tongue tied. I couldn’t follow banter at work. I tried to make jokes and they fell flat on their face. I really did not know what to say or what to do socially. I hadn’t learnt a thing, I’d just let drink take care of it for me.

The world is loud and confusing. Drinking turned it down and made it less confusing. Without it, I felt adrift.

But one thing was certain.

I couldn’t run away from myself any more. I had to stop and face her. Face myself.

And a strange thing happened. I was diagnosed with Asperger’s. That was not what I was expecting at all. It became an interest. It’s my habit to read so I read and read about it and in my reading, I began to discover myself. Not just the parts of myself I or others had deemed socially acceptable or the parts that somebody had labelled diseased but all of myself.

I looked at myself, at her and she wasn’t something scary or bad.

My diagnosis helped my understand myself and take the first tentative steps towards accepting myself. I started to see my internal self as an essential part of myself not as her. I may have learnt to look neurotypical but I never was.

In believing what others said about me, rejecting the core of myself and seeing my autistic self as something to run from, I did myself huge psychological damage. It’s no wonder I’ve spent so long in the psychiatric system. No wonder that I needed to drink.

These days I don’t run. It turns out there was nothing frightening to run from.

I would like to say I have put the mask down completely, but I haven’t. I still haven’t figured out how to get the balance right between necessary masking, because I need to earn a living, and damaging hiding. After so long it has become a habit.

I still dye my hair and try to look smart. But even if I did find a hairdresser who make me look like Suzanne from the Human League or even if I did finally understand fashion, I know it wouldn’t make me neurotypical. I wouldn’t automatically be accepted. I’m OK with that.

Some days I struggle with social situations and I remember I’m autistic and forgive myself. On worse days, I still wish I was normal, whatever that is and feel frustrated and angry at myself and my limitations. Those are the days I’m vulnerable to drinking.

But sometimes, usually when I seek out solitude in the countryside or at home, I feel comfortable and accepting of who I am, without the mask. I’m content with no need to need to run away or hide myself. And those are the days when I am at peace.

My autistic, marvellous, magical meltdown solution

I have autistic meltdowns.

I’ve had them most of my life. They were at their worst during puberty but they never went away.

My meltdowns can be violent explosions of rage caused by stress, sensory overload, change or something I can’t deal with. I’d describe a meltdown as a mixture of fight, flight and freeze all at once. I feel angry, afraid, want to run, want to lash out, a huge melting pot of conflicting emotions. Although they may appear it, autistic meltdowns are not an anger-management problem – they are an overload problem.

Over the years, my meltdowns have lead to damaged possessions, a damaged head (due to my tendency to hit myself round the head during a meltdown) and damaged relationships.

At the very extreme, the worst ones have seen me at risk of trouble with the police, at risk of emergency psychiatric intervention or have caused other people to be at risk (when I threw something through a window). Although the vast majority are not that bad, they are still unpleasant.

I would do anything to stop having meltdowns. Preferably before I damage another laptop.

I’ve tried many things to control meltdowns.

These include: CBT, mindfulness, counting to ten, exercise, diet, learning how to cope with stress, heavy-duty psychiatric drugs, Accepting Responsibility for my Behaviour (as the mental health professionals put it), drinking a lot, not drinking anything, more psychiatric drugs, just stopping doing it.

Most of these don’t help. Some things work a bit. If I don’t drink, exercise regularly and eat healthily, making sure I don’t let my blood sugar crash, I can reduce the risk of meltdowns. But I’ve never been able to stop them particularly at times of change or stress.

It turned out I was looking in the wrong place for answers. Without a diagnosis, I was doing what might help an neurotypical with an anger-management problem. I needed to do what would help an autistic with a meltdown problem.

I found the answer unexpectedly.

A few weeks ago. I had a meltdown. I was going away the next day. I usually have a lot of stress and at least one meltdown before I travel. This meltdown was getting nasty. I was a maelstrom of anger, frustration and fear.  All logic had escaped me – I had hit myself and dumped the neatly-packed contents of my suitcase in a heap on the floor thus increasing my stress even more.

Then, mid-meltdown, I threw myself into a chair and started to rock. I don’t know why I did this, it’s not what I usually do. But I noticed a feeling of calm and, although I still felt shaky, I was able to think rationally, repack my suitcase and finish my preparations.

The next week I was at a conference, another hotspot for meltdowns. I had already had one minor meltdown but the chaotic feelings I experience prior to a meltdown were bubbling up in me again. I felt stressed, angry and panicky, couldn’t concentrate very well and my thinking was becoming irrational.

The last time I’d been at this particular conference three years ago, I’d had a nasty and very public meltdown. I didn’t want a repeat performance so I took myself away and sat on my own in a hotel room.

Normally I would have just hoped that being alone away from the trigger would make it go away. This is an ineffective strategy once my thoughts have become jumbled and the meltdown has begun to build, and could have lead to a wrecked hotel room.

Instead, I shut my eyes and rocked.

After about 15 minutes, I was dizzy, the room was spinning, but an amazing thing had happened. I was not on the edge of a meltdown any more. I could think clearly, I felt in control, like I’d come back to myself and even better, I had the peaceful feeling I sometimes get after a meltdown without having to go through the meltdown. I have never had this happen before.

I went back to the conference feeling calm. I rejoined my discussion group and was even able to participate without getting upset.

Rocking had actually stopped a meltdown. It blew my mind.

I expect there are people out there that had this figured out by the age of 11. I am middle-aged. But it’s incredible to me to find something that actually stops meltdowns. And what’s more it’s autistic behaviour.

Too often autistic behaviours are seen as problematic and bad. People who rock are seen as weird. Perhaps it was one of the things I was told not to do as a child. What if my parents had instead told me at the age of 13 to go and rock for half an hour when I was having a meltdown. How different would my life and my family’s life have been?

Now post diagnosis, in my 40s, I don’t care if people think it’s weird.  I’m autistic and this is an autistic solution.

I’m not it’s solved the problem completely and I will never have another meltdown again. There’s  a chance that if I leave it too late and the meltdown takes hold, I won’t remember to rock. Also over Easter I diverted a meltdown by rocking but it morphed into a shutdown where I was unable to function for a couple of days.

However, it’s still amazing for me to have found something that actually helps. I now rock regularly to keep myself calm, because it feels good and as a preventative measure. If I do have a meltdown, I won’t beat myself up for it, but when I can, I will rock and calm myself down.

I wonder what other autistic behaviours I can use to solve life’s problems? Certainly routine is a big one that helps me a lot. What helps you?

Asking for help

I haven’t had a drink again since my last post though the thought of a big glass of wine hovers at the side of my mind along with the hope that this time I’ll be able to drink only one.

At the end of my last post I wrote that I needed to ask for help. Asking for help is not a natural thing for me as an autistic. My natural response is to try to figure it out myself, do the research myself and solve the problem. Which is fine, but there are some problems that need external help. Alcohol is probably one of those. I am not logical or sensible when it comes to drink. I made myself so ill a month ago when I last drank but I still flirt with the idea of a nice glass of wine and kid myself that this time it will be the one. So I need external guidance.

Continue reading

Bad words

I’ve written a blog before but took it down. So here I am starting again with it.

I want to write, I’ve got plenty of ideas for things I could write about. I think I could write about these things really well. But when I try to write. I can’t. It goes something like this.

I have a good idea. Something I’m really interested in. Probably something to do with autism as that’s what I’m interested in at the moment. Think about it a lot. Think about it while I’m at work, think about it while I’m at home. Mull it over, think about writing about it. Do other things, do nothing. Think about what a good article it will be when I write it. Don’t actually write it.

Eventually sit down to write.

Start writing. That’s rubbish. Delete.

Write something else. No, not good enough and what is going with my punctuation.

Delete.

Write.

Crap.

Maybe if I put that sentence first it would be better.

Cut, Paste.

No doesn’t flow there.

Undo.

No still don’t like it.

Delete.

Frustrated because the ideas in my head haven’t flowed smoothly on to the page, my writing is stilted and bland whereas my brain is full of colour and pictures and ideas and cogent arguments.

Convince myself I will never be able to write

Give up,

Today I’m not going to give up. I’ll write this instead.

I’m screaming with frustration at not being able to write. I’ve written the word “frustration” so many times (and mostly deleted it) that the predictive text in LibreOffice knows what I’m going to say. In fact I think LibreOffice is getting frustrated with me.

Frustration – it’s a funny word. I’ve got that feeling when you see a word so many times, it falls apart and loses any meaning.

Fru-strat-ion.

To me words are good, bad or indifferent. ‘Frustration is a kind of middle-of-the-road word. Parts of the combination of letters are good, parts are not so good. It’s not a bad word, a forbidden word. There are words I dislike so much that I can’t include them in anything I write. They give me a funny taste in my mouth like ashes and I see the colour grey. You’ll never know what they are because a) to tell you would mean uttering or writing the word b) If I did tell you, you’d then associate the word with me.

I’m weird in case you hadn’t yet realised

Ever since I was really small there have been these bad words that I’ve had to avoid. They are ordinary every day words. Words you may see written or hear spoken every day of the week. On a good day I could maybe use them. On a bad day I can’t . I won’t say anything or I’ll talk around them. I remember once I used a bad word in a conversation with a senior person at work, and was convinced that the person I was speaking to thought I was disgusting. It wasn’t a sexual word, just a ordinary word. It’s just certain combination of letters and in some cases the association with a particular thing makes me feel queasy and I still remember that conversation even though it was over ten years ago.

Yes weird.

I am autistic and I find it hard to understand that other people see things differently to me. It’s only recently that I’ve realised that for other people my Bad words mean no more than other ordinary words do to me like “tea” or “horse” or “chair”. That blows my mind – that other people hear those words and don’t get the taste of ashes in their mouth.

Although I’ve never come across anyone else with bad words like this, maybe it’s just a quirk that’s peculiar to me.

I wanted to let the weird out gradually on this blog. You know draw you in, maybe even get you to like me and then gradually let out a bit of the strange. So you thought I was charming and quirky, not just weird. A socially acceptable version of autism.

And then I went and blurted the stuff about the words out. Something that, in all the times I’ve been to see psychiatrists and counsellors and therapists, I have never told any of them.

And I realised in doing that, that maybe the cause of my writer’s block is not that I can’t write, not that I am stuck but because I am still trying to be a neurotypical. I was diagnosed with Asperger’s two years ago at the age of 44 and I’ve spent my whole life trying and failing to be neurotypical and denying and hiding my autism. Although I’ve pretty much accepted I’m autistic, I STILL put a neurotypical face on most of the time. This is partially for survival, I’ve got to pay the bills and to do that I need to be neurotypical enough to hold down a job and partially because I don’t know how not to.

When I try and blog, I am still constrained by trying to have some sort of persona that will be accepted by neurotypicals. I can’t let the need to try and mask my autism go. I also can’t stop the habit of beating myself up for my inability to be neurotypical It’s a miserable place to be, wanting to be myself yet condemning myself for being myself, calling myself weird, putting myself down for not being neurotypical. Doing the bullying for the bullies. Not even letting me be my autistic self, even in my writing that’s supposed to be about autism.

OK I’m just going to post this. Even though it’s not what I thought I was going to write and maybe it doesn’t make sense to anyone else. Maybe if I keep writing I’ll begin to allow myself to be more autistic – in the written word at least. I’ll just write around the bad words.