Burn, Baby, Burn – Autistic Inferno

This week in #TakeTheMaskOff we are talking about Autistic Burnout.

When I was 22 I went to college and did really well. I was getting high grade after high grade, making new friends, learning about myself as well as my subjects, and everything was fantastic. And then, halfway through the year, I started to fall asleep at my desk. I slept all the time even when I was supposed to be studying. I fell asleep in my favourite class. I slept in the break room propped up on the table or hanging off the end of the minimalist (read: extremely uncomfortable) royal blue two-person sofa. To the consternation of my family, I went to bed early every night, slept in late at the weekends, and starting having midday naps whenever possible. My stress levels rose even higher than they had been in the past six months, but no matter what I did, no matter how much I slept through, I could not shake the feeling of utter exhaustion. It felt like I was trying to wade through cooling tar. Then I blacked out and fell down the stairs.

I went to the doctor, who for some unknown reason decided that I was suffering from a mystery virus (even though I didn’t feel ill as such, just exhausted and dizzy), and gave me a sick note to explain why I needed extensions on some of my papers. Somehow I staggered through the rest of the school year and emerged battered but triumphant, clutching my pile of A grades.

I was high on adrenaline from success, I suppose. I was fine for a few months, and then my anxiety, exhaustion, and agoraphobia returned with a vengeance. I couldn’t cope with being around people more than an hour or so per day. I spent 90% of my time hiding in my bedroom, too tired and overwhelmed to do more than my assigned chores around the house (cleaning, cooking, and laundry) before disappearing into my sanctuary again. I had burned out back in the January, but had forced myself to keep going and therefore ended up so badly burnt-out that I couldn’t even leave the house. I slept, again, so much that my family grew alternately concerned and annoyed. I couldn’t find work although I was honestly trying hard to do so. I don’t know how I would have managed if I had found work, so maybe it’s fortunate that I didn’t until nearly a year later.

My point is that it was never recognized for what it was. It was called anxiety, depression, laziness, stubbornness, “not-trying-hard-enough”, and numerous other names ranging from the inaccurate to the insulting. While it’s true that I was both anxious and depressed, I firmly believe that what I experienced was autistic burnout. My world, both external and internal, had undergone vast paradigm shifts in that year, and added to the physical and mental exertion of going to college (another new thing for someone who had never set foot in a school before) and writing twenty-one papers in nine months, the result was an exhausting cocktail of effort and confusion and new experiences. My brain and body attempted to shut down for self-preservation, but I forced myself to ignore their protests and succeed because I was desperate both to prove myself and to gain some kind of academic qualifications.

Autistic burnout is not a buzzword. It’s real, and it can be debilitating. It’s very important to try to take regular time-out from the things that overwhelm you. Regular rest and proper relaxation – in a way that makes you relaxed, not necessarily what other people suggest – can be the pressure valves that help you not to burn out.

If you do burn out, try not to force yourself to carry on with your normal routine. Your body is telling you something and you must listen to it. Take time to heal and be nonverbal if you need to be. Try to set boundaries with your family and loved ones (if at all possible) and help them understand that you need the space and quiet and rest in order to recuperate.

Don’t forget to reach out in any way you can to the warm and helpful autistic community online. Having friends who truly understand what you’re going through is one of the best ways to start healing from damage and burnout.

And most important of all, remember that you are not broken. Damaged, perhaps, but you are whole and you are absolutely unique – and that is a beautiful thing.

 

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Dancing in Public: Bal Masque

Masquerade! Paper faces on parade

Masquerade! Hide your face so the world will never find you …

Masquerade! Seething shadows, breathing lies

Masquerade! You can fool any friend who ever knew you!

– Andrew Lloyd Webber, Richard Stilgoe, Charles Hart and Alan Jay Lerner, Masquerade (Phantom of the Opera)

I mask a lot. My life as an autistic woman has been pretty much one long masquerade ball, a promenade of paradoxes. I was good and quiet and well-behaved, but I was also a chatterbox and a live wire and hyperactive. I was blunt and opinionated but socially anxious; I was clever but I was stupid. I had to mask my intense fear of rejection and failure and social events in order to keep my family happy. I had to mask my identity in many ways, not just my neurotype but my sexuality and my real desires in life, for my future and my happiness.

Now, free from the worst repression in my life, I still find myself masking sometimes, because it’s so ingrained in my psyche. I will rarely say no if you ask me to do something. I will efface my own wishes in favour of yours because it’s ‘polite’ and I can hear my mother’s voice in my head: “Don’t be pushy and demanding, or you’ll never have any friends.”

I apologize for knowing things.

Sometimes (more and more rarely now) I will pretend not to know things, so that I won’t get into trouble for knowing them and making you feel inadequate with my own intellect.

I dance in public now. I conduct a hundred invisible orchestras with the twirl and twist of my restless fingers. I do not care if you stare. I will dance, I will sing, I will stim and laugh and be myself. But every now and then the anxiety creeps back in. I blush, I stop, I hide my hands.

“What if people think you are silly?” says the voice in my head. “What if they don’t like you because you are weird?”

“Don’t be such a child!” says the other voice, the one that sounds like my mother.

But being ‘childish’ can be so much fun, so liberating! Who decided that adults can never be free or have any simple enjoyment in life?

I am autistic. I am not a child. But if singing in the street or conducting an orchestra through the pasta aisle of Walmart makes me childish, then I’m afraid responsible adulthood might be a lost cause.

And you know something? Maybe that’s not such a bad thing. Maybe the true gift of autistic people is in showing the rest of humanity how to live again.

#TakeTheMaskOff 

You Don’t Look Autistic

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What exactly does ‘autistic’ look like?

This is a question that puzzles me, because so often I’ve had people recoil in shock when I tell them I’m autistic, and say those dreaded words,

“But … I would never have guessed. You don’t look autistic!”

In their minds, ‘autistic’ must look like something very specific, very conspicuous, very different. Let’s be honest here, they’re probably thinking Rain Man.

I’m a woman. I dye my hair weird colours and wear gothic makeup. I’m married. I’m an historian and writer and artist. I can’t do maths to save my life. I love reading and writing fiction, particularly of the romance variety. I have a strong and sarcastic sense of humour. On the occasions on which they see me, I’m having a good day and am happy to talk with enthusiasm and energy on various topics. I won’t look them in the eye, but I can fake it well enough that they won’t notice unless they are very observant or autistic themselves. They don’t notice me fidgeting quietly or fiddling with my rings, necklaces, etc. They don’t look down and see me moving my feet in invisible patterns on the carpet.

To other autistic people, I am almost immediately recognizable. To the neurotypical world, I am not what is expected of someone who is autistic.

Which begs the question, why, after so many years of the autistic community trying to explain that ‘autistic’ is never just one thing – just one type of person, just one visible recognizable style of being different – why does the world still see ‘autistic’ as a railway-obsessed, male mathematical genius who bangs his head against the wall when he gets frustrated? I don’t at all mean to disparage or discount anyone who fits those criteria, but why don’t neurotypical people understand yet that not all autistic people are the same?

When someone says to us, “Oh, I’m not autistic, by the way,” we don’t turn around with a face of intense surprise and respond, “Oh, my! You don’t look neurotypical!” Everyone understands that human beings are diverse, unique individuals, and that no two people are going to look, sound, or behave in exactly the same way. Even identical twins are known to have some differences, however slight and hard to spot.

Part of the problem, I think, is in the insistence of the medical profession on pathologizing autism. Diseases tend to have recognizable, identifiable symptoms that fluctuate only marginally between diagnosed patients. If someone comes in with a snotty nose, a mild fever, muscle aches, and a throat that feels like someone has poured acid down it, the chances are very high that they have a rhinovirus (common cold). The issue with pathologizing autism – treating it like a disease – is that it manifests so differently in people. Once you draw up a list of ‘symptoms’, you run the risk of letting people who don’t fit the specific criteria on your list fall through the cracks in the system, to be left with little to no support or understanding. Although the DSM is working hard to keep updating its entries on autism, the older, more rigid criteria have entered the public consciousness and are now proving very difficult to uproot. This is partly, I believe, because they are easy. People in general don’t seem to want to think that autism isn’t a quickly identifiable disorder. They don’t want to think that we could possibly appear ‘normal’. They would rather continue believing that autism looks like a science-obsessed boy in meltdown than have to come to the uncomfortable understanding that autism is neither a disease nor a burden to society.

We are everywhere. Some of us stand out – others, often through years of masking and abusive environments, meld into the crowd and, to the uninitiated, are practically indistinguishable from everyone else.

But just because I may not look autistic to you doesn’t mean I am not ‘really autistic’.

We are here to stay, and we are here to tell our stories.

Please, start listening.

Gothic Heroines, and other Stories

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Recently I have been re-watching Criminal Minds. While I am fond of the show, mainly for the characters on the team, I can’t ignore the many egregious issues it has with writing and characterization of its ‘unsubs’. I can’t deal with all of them here, but in this post I want to talk about two in particular that hit home to me.

1) The Goth as Unsub.

This isn’t unique to Criminal Minds – the idea that people involved in the gothic lifestyle and subculture must be depressed, angry, sad young people whose lives are going nowhere and who will inevitably end up hurting themselves and/or others. I find this commonly held belief not only obnoxious but ultimately harmful to the goth community. Here’s why:

After Columbine, the public wrongly connected gothic lifestyle and fashion choices with mass murderers. This response made life even harder for those who didn’t fit into mainstream culture. Parents became paranoid about their children’s preferred style of clothing, makeup, and music – usually unnecessarily.

Reinforcing stereotypes of the goth as a damaged, vulnerable, or dangerous character propagates the belief that everyone needs to be the same in society. Those who don’t fit in are penalized and bullied for being unique and having their own style. This is a subject dear to my heart as an autistic goth, so no I can’t say I am totally objective here – however, I am also speaking from experience. Most goths with whom I am acquainted are cheerful, interesting, successful people with a rich inner world and a great (if dark) sense of humour. To insinuate that these people are likely to commit crimes is really very irresponsible. It leads to the erroneous belief that one can instantly recognize a criminal, a murderer, a terrorist, simply by the fact that they are socially anxious and don’t blend in with their peers. This, in general, could not be further from the truth.

One must ask oneself why TV shows and books need to scapegoat people who are different. The fact is that people don’t like goths, for much the same reason that they don’t like autistic people. We make them feel uncomfortable. We unsettle and offend their pleasant little assumption that everyone in the world is exactly like them. They do not like to imagine that anyone who looks, acts, or sounds different is capable of being just as successful at life as they are – and often more so. I will provide two examples of goths in the public eye who smash the stereotype – one from fiction and the other from real life.

Abby Sciuto from the show NCIS is a beautiful and outstanding example of how goths can and should be portrayed in popular media. Played with great charm and effervescent energy by Pauley Perette, she is a dynamic, happy character who is extremely good at her job, and builds strong and deeply affectionate relationships with her work colleagues.

In real life, Dr Janina Ramirez (who happens to be one of my greatest celebrity crushes and a personal heroine of mine) is a wonderfully enthusiastic cultural historian and TV presenter. She is friendly, kind, and unbelievably knowledgeable, and has a megawatt smile that can knock you sideways.

While it’s true that many goths are first attracted to the style and culture during periods of intense emotional upheaval in their lives, it absolutely does not follow that all of us are depressed, morose, angst-ridden, or violent toward ourselves or others. This sort of stereotyping must end if the human race is ever to learn how to accept diversity in society.

Which brings me to my second point.

TW: Self harm, suicide (below the line)


2) Self Harm Leads to Harming Others (as a plot point)

This really bothers me. Most people who have self harmed will explain that it has very little to do with actually wanting to hurt oneself or others. It’s a form of nervous release, a calming and cathartic process. There is usually not much violence intended. Even those who are intentionally violent to themselves almost never harm others. Self harm, is, in effect, the opposite of hurting other people.

But media constantly connects self harm with danger to the public, and this is horribly damaging to people who suffer from anxiety disorders or other issues that make them self harm. There is already enough stigma attached to mental illness and neurodivergence. How likely do you think a young person will be to reach out for help if all they see of self harm on TV is when it appears as part of a profile for a murder suspect?

How likely will they be to admit that they need support?

And, conversely, how likely do you think they will be to feel so completely alone and persecuted that they will consider a more permanent form of release from pain and distress?

Suicidal ideation is very common in people with anxiety and depression. This absolutely does not mean that they are bound to attempt or succeed at committing suicide, and even less does it mean that they are likely to kill someone else. Society has this peculiar moral slant on suicide that views it the same way as murder. It is not the same. One’s life is one’s own. Is that not the basic principle of human free will? To do as one chooses with one’s own life and body? Suicide, an act of supreme desperation and despair, should never be viewed in the same light as willful murder of another human being. And yet time and again we see ‘a danger to self and others‘ being trotted out as a catch-all phrase.

When I was at my lowest emotionally, self harming and attempting suicide, I never once thought about hurting anyone else. I wanted to relieve both myself and others of the burden that I felt I had become. To place me in a category of people who deliberately plan the brutal deaths of others is an insult to my entire being.

I will say it again, louder for those who don’t like hearing it –

Self harm and attempted suicide are not indicators of violence toward others.

Please, we have to stop looking at people who need acceptance, love, and support, and vilifying them as sick monsters who will end up hurting others. It is neither correct nor fair to do so.

Counting Steeples

When I was a child, I possessed the magical ability to fall asleep as soon as I got into bed and sleep like the dead right through to the morning, when I would wake up bright and early full of life and zest and bounce.
Then puberty happened, and with it some pretty horrendous health issues, and the long and the short of it is … I suffer with periodic, chronic insomnia. Half the time I can’t sleep until 2 or 3 am, and then the other half of the time I’m frantically catching up on lost slumber and sleeping like Briar Rose for a thousand years (ok, ok, actually more like 12-14 at a time).

I think part of my problem lies in not being able to shut my brain off when my body is tired. Something is cross-wired in there, and my poor body can be screaming at me to just shut my eyes and damn well go to sleep, but my brain will be merrily running on at warp speed and refusing to listen.

College is wonderful, but (there always seems to be a but and I’m sorry if all I seem to do here is complain; I don’t really mean it to be like that, but I feel that maybe some of this stuff is relatable?) but by its very nature it crams my head full of information which my brain then has to sort through and file and process. Usually, for reasons best known to itself, it decides that the ideal time to do this is right when I’m trying to settle down for the night. Currently it is wading through a pile of architectural terms that I’m trying to learn for an exam. Flying buttresses, steeples, rotunda, basilica, pediment, tholos, pendentives, Doric, Ionic, Corinthian …

You see my problem. I should be asleep, but my brain has turned itself into a cataloguing machine. I suppose I’ll have to resort to the old favourite, counting steeples.

Er, wait. Sheep. Counting sheep.

That has never worked for me anyway.

The Two-Edged Sword

Excitement for me is a two-edged sword. It’s a wonderful feeling to begin with, and it spreads through my entire body taking adrenaline and endorphins with it … however, the problem is that my brain doesn’t always know whether it’s dealing with excitement or anxiety. They feel very similar, too similar for my poor brain, and so it starts sending out panic messages.

Why are we anxious? What’s going on? Is there some big horrible thing happening that I wasn’t notified about? I didn’t get that memo.

I get irritable, edgy, panicky and then the meltdowns start to happen.

At the moment I am very excited because I’m going to take another trip across the big pond in nine days’ time. I’m a bit nervous because of what happened last time (see Globetrotting: Flight 666), I have also been very busy at university, and I started a new job last week. The excitement has mingled with stress and anxiety, and my brain is currently overloading.

I was a hairsbreadth away from a serious anxiety attack this Thursday, so much so that I had to bail on my classes and hide. I’d already worked pretty hard in my morning class despite not having had the time to prepare (see: work and essay writing), and the lecturer was annoyed because most of the rest of the class was very slow in responding to her questions. This was stressful in itself, and then I looked at the preparation for my afternoon class and crumbled. There was too much information for me to handle. I couldn’t – I just couldn’t. I feel guilty when I don’t attend classes, but the alternative is to have a full-blown meltdown in the middle of it, so hiding is by far the better option no matter how bad I feel about it. I’m getting to the point where I don’t even want to step outside my house because I’m already so strung out that anything might send me into sensory overload.

This is life for me. I don’t know how to prevent overloads from happening when there is constant information being thrown at me, other than dropping everything and hiding. I’m not complaining exactly – I want to be at university and I want to do well – but I’m just saying it is very difficult for me and simply because I get good grades doesn’t mean I’m walking it.

 

 

University, Anxiety, and Shutdowns

This isn’t what I had planned. I wanted to start off with this blog on a positive note, saying how great university is and how much I enjoy it.

Well, it is, and I do. But it is also a high-stress environment for all sorts of reasons, two of which I am going to address in this post.

People. People are great, as a vague concept. As a reality they are loud, confusing, colourful and touchy, especially in large groups when they all tend to merge together into one horrific mass of riotous noise and clashing, painful colours. When I’m alone again I always find it faintly amusing that so many Neurotypical people make a fuss about Neurodivergent people not understanding the concept of personal space. Have you met yourselves? When you stand in a bundle all down the corridor outside my classroom and I’m trying to walk through as quickly as possible, you never move out of my way, and when you are walking past me, anyone would think I was invisible.

I have a number of new friends at university. I enjoy spending time with them. However, as a general rule, group study doesn’t work well for me. People start talking about nothing, I can’t concentrate on what I’m reading, and just when I have managed to cram a relevant sentence into my overstimulated brain, one of them decides to ask me a question related to the conversation I haven’t been paying attention to for the past ten minutes.

People are great… until you have to deal with them in large numbers several days a week. This is why I don’t tend to do much on the weekends. I need time out to recharge.

Deadlines. Now, up to a point, deadlines are a useful thing for me. They can give me a structure, a purpose, something to work toward. If I have no deadlines, I probably won’t do anything at all.

However, I have problems sometimes with concentration and ability to stick to my task. There are times when I can study a subject for days; there are other times when I stare at a screen of text for forty minutes and cannot take in any of it. If I have a deadline during one of the latter times, things become very scary.

Last night I had an anxiety attack followed by a shutdown. I was nonverbal for several hours as a result. I’m getting worse because I am so stressed.

Tutors and lecturers think that we all need to have our ways of learning mixed up every now and then because otherwise it becomes ‘boring’. Believe me, I don’t need this. I learn best when a lecturer is speaking and I can write notes.

Asking me to do a group presentation is certainly not boring, but it sends me into immediate Panic Mode.

Yesterday was a day when I couldn’t concentrate. I tried so hard to gain information ready for my group meeting today, but after half an hour I had only a few sentences of notes, and I felt like a failure.

FAILURE ALERT! FAILURE ALERT! All the systems in my brain stalled to listen to the Failure Alert.

“Rosa has failed,” it chanted, over and over. “She cannot concentrate on a simple task. How will she pass any of her degree modules? How will she ever get a job? How will she do any of the things she wants to do? She is a failure. She will lose everything. She will lose everything she wants. She will keep failing. She is a failure.”

Anxiety levels rose to boiling point and I started to tug my hair. I don’t pull it out, but I tug on it because the sensation is sort of helpful when my nerves are spiralling out of control.

I had been texting my boyfriend during this, and he decided to Skype me.

I discovered a problem when I clicked ‘accept call’. My voice wasn’t working. The stress levels had reached such a height that I literally couldn’t talk.

In the past when this has happened it has usually been when my family was angry with me, and going nonverbal has had disastrous effects in those situations. Realising I couldn’t make my words come out of my mouth, I started to cry.

May I just say, my boyfriend is wonderful. Endlessly patient, kind, understanding, accommodating, and gentle with me, he makes me feel safe and cared for. He keeps telling me it’s ok to feel this way, it’s ok to not be able to do this and for someone with my fears and experiences that is absolutely the most comforting thing anyone can say to me. Validating a person’s feelings and their reactions to those feelings is the single most important part of any relationship, but especially so when one of the people in the relationship has an anxiety disorder and/or is autistic.

He kept talking to me, telling me it was ok that I couldn’t speak, and eventually asked me if I was able to type responses. I could. I did. We talked for the next few hours in this way. It was exactly what I needed.

This morning my words are back where they should be, and my anxiety is back down to manageable levels.

Stress is horrible, terrifying, and when you lose your control over it you can feel like the world is crashing down around your shoulders. But if you can find people who truly care about you and will support you and help you through your worst moments, who will love you and calm you through your meltdowns and shutdowns, you can survive. Better than that, you can win.