I am a recovering Covert Autistic, would you believe it…?

Autistic people are not well-liked. When experts have looked at allistic folks’ perceptions, faced with an autistic person, it has been found that their immediate response is more likely to be dislike than when viewing another allistic person. This negative opinion generally changes when an autism diagnosis is disclosed to the participants.

So perhaps I should say instead that ‘Covert autistic people are not well-liked.’? For me, that sentence conjures up images of undercover autist spies, dressed in comically bad disguises. What are they trying to discover? The secrets of allistic communication? Perhaps. If only it were that easy!!

Ideally, being ‘overtly autistic’ would simply involve being one’s authentic autistic self (Side note: it must be acknowledged that there are many people all over the world who do this. In fact they have no choice but to, due to the unique way their autistic needs interact with the allistic world. These people face other, much larger, challenges. Like convincing privileged ableist allistics and autistics to treat them like actual people, and reminding the ‘autism is my superpower’ folks that autism is a very real disability…).

But, for those of us with the privilege of a choice, the idea of straightforward authenticity is naive in the extreme, because living in communion with other folk, all of whom have their own understanding of what it is to be human, and, it seems, all of whom wish to unceremoniously dump those understandings on you, for you to wade through, pick through, and find your own, takes its toll.

And when you are a late-diagnosed autistic person, a person who was socialised as a girl, and then as a woman, it can be so incredibly hard not to be swept away by the understandings, dragged down by the expectations, and left with a blank slate. A mask. Because when they see you without that mask, and without a diagnosis, they just do not like you. You’re too awkward. too weird. Too honest. Too friendly. Too bossy. Too intense. Too much altogether.

I have masked. I’ve masked so hard that I sometimes don’t know where the mask ends and the real me begins. And people like me. I have friends. I do the right thing – say the right thing. Occasionally, the mask slips, just a bit, but I’m alerted immediately by those around me ‘kindly’ commenting on my uncharacteristic oddness.

The thing with masking all the time is, it’s bloody exhausting! It causes meltdowns, that are read as tantrums (you’re far too old for that behaviour!!), shutdowns, which are mistaken for sulking, and burnouts, that get you diagnosed with depression, anxiety, personality disorders… And I didn’t even know I was doing it for the first 34 years of my life! So you can imagine my delight when, armed with my shiny new autism diagnosis, I set about unlearning all that allistic baggage, and being my authentic autistic self, for the first time since infancy.

And…well, not only does it turn out that teaching yourself how to interact with the world in an entirely new way is…tricky? But also, other people have Opinions.

Because, “yes, you are now awkward. And odd. And oh so very honest. And yes, that means that I don’t really like you very much.” “What’s that? You’re autistic?!” “But that’s impossible!” “Why? Well, because those poor loves are total superheroes, inspirational just for managing to get up in the morning!” “And anyway, I should know – my neighbour’s cousin’s wife’s step son is autistic. He’s five, and you’re nothing like him!!”

Awareness days suck

An old friend of mine has had breast cancer. She hates ‘Breast Cancer Awareness Day’. Says we’re all already aware. That wearing pink means nothing. The same with that fad of turning your Facebook picture black and white (without saying why!), for ‘cancer awareness’. A while ago, she wrote a Facebook post about it that went viral. The picture she posted was a black and white selfie…of her topless, showing botched mastectomies. You could say the words she used were harsh. She said that people were already aware of cancer, and that what people need is actual help, not a bunch of black and white selfies. That the people who did it were self-serving, and wanted to feel better about themselves.

I have an odd relationship with mental health awareness days.I realise that there is a lot of work to do on stigma. However, these days don’t seem to be doing that. I once wrote:

“[mental health awareness day] seems to be an exercise in people who want to appear open and inclusive encouraging other people to have clean, sanitised convos about ‘easy to understand/relate to’ mental illnesses so everyone gets to feel smug. There, I said it.
WE DO NOT EXIST TO MAKE YOU FEEL BETTER ABOUT YOURSELF.
We are not cuddly injured puppies. We are a monstrous scary mess.”

I was feeling particularly ranty when I wrote this, but I think I have a point. These days seem to exist more for the people who support them, than the actual people with mental health problems. Additionally, where is the awareness of the ‘less palatable’ mental illnesses? I can tell you that my friends with schizophrenia, personality disorders, psychotic illnesses etc do not feel included in these days.

My final gripe with awareness days – they very rarely take reality into account. ‘Just ask for help’ is all well and good, but when mental health provision in no way matches the demand (for example, after several months of waiting, feeling regularly suicidal, my friend just received an appointment through to see a psychiatrist…in six months time), we have to ask ourselves how responsible that message is?

It is not a case of asking for help and accessing it at a point of crisis. The reality is long, lonely waiting times. And while I acknowledge the fantastic work of organisations like Samaritans and Breathing Space, they should be an addition to NHS services, not be expected to catch all the people failed by the system – some of whom have multiple and complex mental illnesses.

What is the answer? More NHS resources, of course. Will that happen? I’m not holding my breath, but in the meantime I’m sure there’ll be an awareness day.

Space to ‘just be’

“I feel as if I wanted to be quite alone by myself”
Bobbie, in ‘The Railway Children’

When I have periods of being unwell, I don’t want to do anything. I want to be away from everything, everyone. I want to be alone.

I recognise that an important part of getting better is engaging, doing things, being active. I’m pretty sure that’s what psychology calls ‘behavioural activation’ (get me, with the fancy terms!). But I also think that the importance of doing nothing, or giving yourself time and space to ‘just be’, can’t be underestimated. This is hard to see sometimes though. Especially when it seems like everything is demanding your time.

When in the steely grip of a depressive episode, I lose myself. I stop having opinions, I refuse to even acknowledge my feelings. Instead of listening to myself, slowing down, taking a break, I try to do what everyone else wants, and push myself until I can’t keep going. Physically and mentally exhausted, I want everything to stop, and instead of saying no to people, relieving the pressure a bit and allowing me space to rest, I feel that my only option is to make everything stop by ending my life. This is a scary place to be, and one that’s difficult to navigate your way out of.

It’s difficult to say no. In our personal lives, we don’t want to let down the people we care about. At work, we want to be seen as capable, reliable, and hardworking – ‘team players’. So saying no, that we don’t want to do something, or that we can’t or don’t have the capacity, is difficult. But it is important. I’m realising more and more that feeling able to say no is essential when it comes to my own mental health. I’m not saying that we should refuse to do anything we don’t fancy – compromise is a really big part of relationships – but setting limits, and sticking to them, means that you’re not sacrificing your own health and wellbeing in order to keep others happy.

A good few years ago, I was talking to a friend about this. She said that, very often, when someone asks her to do something, instead of saying yes immediately, she asks for time to think about it. I think we all need that time, sometimes, but we are afraid to ask for it. Maybe it’s time to be brave though. What’s the worst that could happen? The world will not end, people will not hate you. And the best? You get time out, to ‘just be’. And that is a very good thing.

This guy

There’s this guy I know. I’ve known him a while. In fact, I barely remember the time before I knew him. But there was a time before I knew him. Before he knew me.

Before he knew me, before we knew each other, there was this other guy. He was the guy I was supposed to know. I am supposed to still know now. Part of him was involved in the making of me. In my conception, both mentally and physically. For some, that creates a bond. For this guy, it did not. He did not want to know me. And so he didn’t.

For a short while, there was this other guy. Really, he belonged to the woman who knew and loved me best, but she shared him with me. He wanted to know me. And we knew each other. For a short while. But he couldn’t stay. Though he wanted to.

Which brings me back to this guy I know now. This guy who showed up at my door with flowers for the person I loved most. Who told the most exciting bedtime stories. Who picked me up and spun me round and round til I couldn’t stand up straight. Who got to know me

This guy who came to drop me off at university. Who taught me how to think critically, and argue my point. Who comes to my rescue over and over. Who smiles when he sees me, and always has a hug ready. Who drinks all of my coffee. Who loves me.

Some people would call this guy Dad. That’s not how we do things. I may not call him Dad, but he is my dad, and I am so so lucky that I know him.

The importance of people

“I feel like my life is so scattered right now. Like it’s all the small pieces of paper and someone’s turned on the fan. But, talking to you makes me feel like the fan’s been turned off for a little bit. Like things could actually make sense. You completely unscatter me, and I appreciate that so much.”

Will Grayson, Will Grayson – John Green and David Levithan

People are important. Reaching out is important. A text can save a life. Today I am grateful for my friends.

For years, I was convinced I needed to deal with everything on my own. That my problems were mine alone, and that letting people in was the worst possible thing I could do, for them, and for me. Depression convinces you that you are worthless. Worth less than everybody else. So what right do you have to inflict yourself on other people? Who are you to ask for anything from anyone?

I personally find it very difficult to ask for help, with anything. I think this is true for a lot of people. We live in a world where admitting weakness very often results in a loss of respect from those around us. People take advantage. Survival of the fittest has created a culture of fear. Fear of honesty. Fear of judgement. Fear of being seen a less than. In some cases, even physical illness is seen as a personal weakness. But there is a particular feeling of superiority when it comes mental health problems. Borne out of a lack of understanding, perhaps. Well, I’d like to think.

To a large extent, mental illness is invisible. People suffer in silence, develop coping mechanisms, some healthy, some not. So unless someone reaches crisis point, the people around them are very unlikely to know there is a problem. And if your only experience of mental health problems is seeing someone in crisis, it all becomes a bit Big and Scary. But what if we were all more honest about our daily struggles? What if admitting to anxiety was no more remarkable than telling people you had a headache? Are we ready for that? Do we even have the language necessary to have these discussions? It’s hard to say things, articulate things, that people have a limited understanding of.

But it is important. To talk. Whether it’s sending a text, messaging on social media sites, leaving a comment on a blog, meeting up for a coffee and a chat, or sending a good old fashioned letter. These are things that can help. It’s important to reach out, to let people in. It may seem scary. You may stare at that send button for ages before working up the courage to press it. But believe me, it’s amazing the weight that lifts afterwards. Just knowing that someone else knows can make a huge difference to how much strength you have to cope with difficult situations.

So, I guess what I’m saying is, if you know someone who’s having a hard time, contact them. Let them know they’re not alone. And if you’re suffering, I know it’s hard sometimes to see anything outside yourself. But people are there. And want to help. A text could be the first step.

Being yourself…and liking it

Do you like yourself?

I’d like to say that I do, but I don’t. I don’t remember over having done so. Even as a small child I can remember telling my mum that if I were someone else, I wouldn’t be friends with me. I was seven years old, and already convinced that I wasn’t good enough. I didn’t understand when my mum got upset, but I hated seeing her cry, so I never mentioned it again. But I never stopped thinking it. Even when I wasn’t in the grips of depression, I still hugely disliked the person I was. Of course, I realise that depression magnified these feelings, and that past experiences definitely contributed to low feelings of self worth, but I always thought that this baseline ‘dislike of self’ was normal.

During a chat with a friend one day I said “nobody likes themselves” (or something similar – I don’t understand how people can quote conversations word for word months/years after the fact!). His reply that this wasn’t true, that most people were at least ok with themselves even if they weren’t completely in love, startled me. Subsequent conversations about the idea of self worth have been a revelation. I had never really thought about how extreme my thoughts about myself were. It was when I started unpacking them, thinking about the whys, and trying to think things through rationally, that I realised that this was a big problem for me.

Once, at an appointment, out of the blue, a therapist shared something with me. Based on our past conversations, she’d written a list of positive things about me. As she read them, I felt tears begin to fall, and I couldn’t make them stop. When she asked me why I was crying, I couldn’t answer. I’ve been thinking about it a lot since then, and I’m still not entirely sure why I got so upset, but I know it had quite a bit to do with my own attitude to myself. This is something I’ve been working on a lot lately. It’s one of the hardest things I’ve ever done. Changing thought processes takes time, and a lot of hard work. It’s a huge struggle to maintain the level of effort needed to make lasting changes. I fall short a lot of the time. But I am working on it.

I know that the way I’ve felt is pretty extreme, and that not everyone feels like I have. However, through conversation, I have discovered that a lot of people seem afraid to like themselves (or at least to admit to liking themselves). We’re told by society that it is wrong to think ‘too much’ of ourselves. Being accused of loving oneself is seen an insult. Girls (and boys…and women and men and all the wonderful non binary folks) stand in front of the mirror, listing all the things that are ‘wrong’ with their bodies. Job interviews are a struggle to find a balance between showing our strengths and selling ourselves, and being self depreciating enough to avoid the appearance of boasting.

Of course, I do realise that there is a line between liking who you are and thinking that you’re the best and most important person in the world. Narcissism is a hugely unattractive personality trait. But it would be great if more people felt that it was ok to openly think and say positive things about themselves.

So. Have a think. Do you like yourself? Are you at least ok with yourself? Do you automatically put yourself down? Or do you see the good in yourself (as well as the bad – nobody’s perfect!). Also, do you allow the people around you the space to feel good about themselves? If you’re a parent, or spend time around children and young people, it is especially important to model this kind of behaviour. It’s much easier to develop a good self image when young, and retain it, than to change thought patterns as an adult. And how a person views themself can have either a negative or positive effect on how they live their life. Believe me, I know.

Self harm procrastination

*This post is about stopping self harm, so it does make mention of it. There are no details, and what I have to say may even be helpful, but please be safe.

Many people keep track of how long it has been since they self harmed. Some people thrive on this, enjoying the feeling of achievement they get from seeing the numbers. But for some people, this just piles on added pressure and feelings of shame and guilt when they have to start again from the beginning. I am one of those people.

In my life, I have had more than my fair share of ‘last times’. When my self harm had moved from coping strategy to (extremely) bad habit, I tried to stop. A lot. I’d tell myself that this would be the ‘last time’. That I was never, ever, ever going to hurt myself, ever again. Two or three days later, the resolve would be gone, and I would be craving the feeling of release that it gave me. So I’d hurt myself. And feel even more of a failure than I had to begin with.

It wasn’t until I changed the way I thought about stopping that I successfully managed to stop habitually self harming. They say you should play to your strengths, and at that time, if there was one thing I was good at, it was procrastinating. I was always putting things off. So, instead of the idea of a ‘last time’, I began thinking more in terms of ‘not now’. This self harm procrastination meant that whenever I had the urge to harm myself, I pushed it away, crucially not thinking that I would never do it ever again, but that I wouldn’t do it in the next 5, 10 or 15 minutes. When that time was over, I’d repeat the process.

‘Not now’ lasted a long time. Making the conscious decision to postpone harming myself after years of relying on self harm to cope was tough. And there were many times that I did harm myself. But I would always go back to procrastinating. Eventually I could think ‘not today’. And if you can get through one day, why not another? It was always a struggle, and the feeling never went away completely, but I have managed to change my relationship with self harm.

Because I didn’t have a ‘last time’, I have no idea how long it’s been, but I know it has been a while. Learning new ways to release tension and self soothe has been a happy consequence of my self harm procrastination. That said, in times of high stress I do sometimes long for the relief it could bring. But I think the good thing for me is, by thinking ‘not now’, and ‘not today’, I don’t have a last time, not as such. So there’s no pressure. It’s an ongoing project. I’m an ongoing project. We all are.

Self harm saved my life

*This post shouldn’t be triggering, but please make sure you are safe before reading.

I am hesitant to post this. Please be keep in mind that I am speaking from my own experience of this subject – I in no way intend to speak for anyone else. I’m aware that it may be controversial. Feel free to comment with disagreements, but please remember to always be kind.

Self harm is definitely not a healthy coping strategy, but it’s not illegal, doesn’t hurt anyone else, and it saved my life.

We all have ways of coping. Some are healthy, some aren’t. Some people exercise, some meditate, some people talk to friends and family. But other people (especially, but not limited to, those experiencing mental health issues), turn to drugs (both legal and illegal), alcohol, violence, restricting or purging food, and also to self harm.

Everybody’s experience of self harm is different. People cut, hit or burn themselves. Some people take smaller overdoses (something which can be really dangerous, and definitely not to be recommended!). I harmed myself in a few ways, but cutting myself is what helped me the most. When I deliberately cut myself, it didn’t actually hurt. To be honest, it felt good. I often wished I didn’t know how good it felt, because that’s what made it so difficult to stop. It was a release. When I was overwhelmed, cutting focused my mind. Quietened everything down. Sometimes it was like taking a deep breath after holding it until your lungs feel like they’re going to burst. And sometimes it was like a small sigh of relief. To this day, it’s the only thing that I know is guaranteed to make me feel better instantly.

I don’t know when I started self harming. I can’t remember. As a child, overwhelming feelings very often led to me hurting myself in some small way. It made me feel better, more in control. When I was a teen, this escalated as I became more depressed, and by the time I was 18 I was cutting myself almost every night.

For me, when I was younger, I self harmed the way I did a lot of things – impulsively. However, as the years have passed, my relationship with hurting myself has changed. Self harm is something I can choose to do, or not. (And this is something that mental health professionals seem to be unable to grasp: levels and severity of self harm are not directly proportional to mental pain).

So, I have ‘chosen’ not to self harm anymore. I’m aware that I’m very lucky that I am able to choose – the nature of their illness means that some people are simply unable to do this (this, by the way, does not mean that they’re not trying hard enough, or that they’re more ‘mental’ than me, or…anything really. How and why people self harm is a hugely personal thing.).

I’m often asked: do I regret self harming? I mean, I have lots of scars on my body as a reminder, and still have to be careful how I dress in order to cover them in certain situations. The answer, though, is no. I don’t regret it. You see, self harm saved my life. I cannot overstate this point – it saved my life. At a time when I was really suffering mentally, and was hugely impulsive, I know for certain that self harm prevented me from making a serious attempt on my life. And for that, I’m grateful to it.