Walking into lampposts – disclosing autism or hiding it

I want to stop hiding my autism.

I had a friend who was partially sighted. At the time I knew her, she did not always want to be identified as visually impaired and often refused to carry a white cane. She bumped into a lot of lampposts.

I am just like her because I don’t disclose my autism, only the lampposts I bump into are metaphorical social lampposts. They give me less of a headache but still leave me in psychological pain. I try to do the right thing but it backfires. I upset people. I blunder around. I feel stressed, drained and miserable because I spend so much of my life trying to look normal.

Take what happened last weekend

My mother fell over and I had to take her to the hospital. Although I was feeling overloaded and out of energy after a difficult week at work, I managed to find reserves of energy in an emergency situation and I coped well.

The emergency department was hard though.

We had a long wait to see a doctor. The waiting room was busy and noisy with bright lights and humming vending machines. We were not given any indication of how long we were going to have to wait.

I don’t mind waiting when I have a clear indication of the time involved but with an indeterminate wait in a hostile environment, I became anxious and began to fret that we’d been forgotten.

I didn’t want to make my mum’s day any worse by having a meltdown but I was very stressed. I tried to hide it but it was obvious to her I was getting anxious and she sent me out a couple of times to give me a break. She felt guilty about ruining my day by falling over and I felt guilty because I wanted to be calm and support her but I was having trouble controlling my anxiety.

Eventually I went to check we were on the list. I didn’t express myself well and, I think, came across as an impatient person wanting my mother to be bumped up the queue. This probably didn’t go down well with the busy nurse. I heard other people in the waiting room whispering about me.

I was left feeling ashamed of myself and worried I had behaved badly or been rude (although this was not my intention).

Mum was OK, thank goodness, nothing broken, but the experience left me worn out and I had a bad meltdown a few days afterwards.

If I had been open about being autistic, would it have been any better?

I could have told the staff  I’m autistic and it would help me support my mum to know the length of the wait and that we’re definitely in the queue. Maybe they could even have found us somewhere quieter to wait. It would not have been too much trouble for them and it could have made the difference for us.

I would have been calmer. I could have just settled down and read my book. I could have supported my mum and not given her the additional worry about me as well as the worry that she had broken her arm.

If I had a visible disability, it would have been obvious that I needed support. Because I don’t have a visible disability and because I default to hiding my invisible disability I don’t get the support I need. Support which would help me support my mum.

But in order to get my needs met, I need to communicate them. One of the key autistic traits is problems with social communication. At times of stress, when I need help, my communication skills are not up to the job of explaining my social communication disorder in a way that would give me the help I need.

It’s a catch 22 situation.

If people around me were more aware of my autism, somebody might know how to help me. Because I don’t explain about it, they don’t know. Even my mum who knows I am autistic didn’t realise my anxiety was autism-related. She knows I have trouble in that sort of situation and is supportive but doesn’t know why so she can’t communicate it for me.

I could get an autism card that I could show in times of problem. I haven’t bothered to get one because I haven’t got round to it and also because I feel I can cope.

I can cope. Until I can’t. Then I hit a lamppost.

I have a lot of fear around disclosure.

Will people treat me differently? Will they talk down to me? Will I appear weak?

And the big one: What if they don’t believe me?

My autism diagnosis is important to me. It has given me a sense of self after years of wandering in a wilderness of doubt and confusion and not having a clue about who I am.

It has changed my life. I don’t want to have to justify it to anyone.

That’s why, even though I spend a lot of time reading about autism and thinking about it, I don’t often talk about it in real life.

When I have disclosed to family and neurotypical friends, people haven’t understood. They’ve told me stories of their autistic relatives who are different from me. They’ve asked if there’s any treatment. They’ve talked about the bullshit diagnoses that psychiatrists come out with, in an attempt to comfort me. They’ve told me I don’t look autistic as if that is a compliment.

They don’t really understand how validating the diagnosis is to me. And I don’t have the words to explain it properly. I tried to write a blog post to show them to explain it and after about 15 drafts I gave up.

It feels less painful just to rely on my ability to pass as neurotypical. It’s what I’ve done all my life.

But I started this post by saying “I want  to stop hiding my autism”.

And I do.

I don’t have to stop hiding my autism. My partially-sighted friend had the right to use her cane without being judged but she had an equal right to chose not to use her cane and not be judged for making that choice (this post is not intended to judge her in any way). The consequence was she walked into lampposts but she knew that would happen. I have the right not to disclose my autism but I know this means I’ll still walk into metaphorical lampposts.

I feel I want to disclose because I constantly feel that I’m one lamppost away from a massive mental breakdown at the moment. I’m stressed at work and the pressure of appearing neurotypical is putting a strain on me.

I need to stop hiding so I can support my mum. I need to stop hiding for my mental health. Passing, pretending to be someone I am not, is damaging. I hold it in, appear controlled and calm but inside I am full of turmoil.

It doesn’t mean I have to do a big coming out declaration The drama queen in me is drawn to that but the more sensible side in me wants to do it a little at a time.

I started by talking to Mum about it. She listened. I’m not sure she’d be in a position to help me in an anxiety situation but at least she knows why I get some anxiety in situations like the hospital.

I’ve downloaded the form to fill in for the autism card.

The next step is to talk to the wider family.  I’m not sure how I’ll overcome their objections yet, but I will try.

One day I want to be completely out about my autism. Put my real name to my blog. It will be so freeing after spending my life feeling like I always have to hide parts of myself. I want to be honest. I want to tell people who I am.

I’m still not sure exactly how I will get there. I’m scared of doing it and there will be plenty of lampposts to walk into on the way, but it will be a huge relief.


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.