What anxiety feels like (for me), and how I survive it.

This is one of those posts that can only ever be accurate to my experience. There’s no ‘right’ or ‘wrong’ way to experience anxiety, just a combination of symptoms that affect particular people. I find my experiences of anxiety fit into some smaller sub-types that I’ve defined for myself, and by defining those types, I’m better able to treat myself when I need to.

Anxiety is often mis-understood as a psychological illness with purely psychological effects. This is very rarely the case. Anxiety starts in the brain, but the physical effects that result can be debilitating.

So here goes. My anxiety and panic sub-types, as defined by me.

PANIC DISORDER

For some, the terms ‘panic’ and ‘anxiety’ are interchangeable. I don’t feel they are, but those are just the words I use to label how I feel. I have been formally diagnosed with panic disorder, and to be honest, these days–it’s the easiest of all to manage.

Panic disorder, for me, is the sudden, crippling, struck-by-lightning, acid-down-your-back, stomach-through-your-toes, overwhelming sense of sheer terror that grips me out of the blue.

The weird thing about it, is usually I don’t realise I’m anxious prior to the attack occurring. I’ll be fine one moment, and then bang–it hits.

After the initial terror shock, my heart rate sky rockets. I breathe fast, I feel nauseous. I very rarely have the ability in these moments to think straight, my thoughts are in a blender on the fastest speed. Everything is fragmented.

The more it goes on, the more symptoms join the party. My head feels like lead, my legs are made of incredibly heavy jelly–but the middle of me doesn’t feel like it’s there at all. I might vomit. Colours become brighter, white becomes unbearably incandescent and black looks like a void I’m about to be sucked into. Eventually my vision clouds over.

My body is utterly out of control, and still spiralling. So it does that one thing computer techs around the world wearily ask:

That’s right, an unexpected reboot!

Fainting is the body’s way of taking human thoughts out of the equation, and restarting with enough basic functions to get the terror under control. Before… you know. I have a heart attack or something.

Problem is, it’s also absolutely fucking terrifying.

So, how do I avoid getting to that drastic point?

It’s actually simpler (and still harder) than it sounds.

I don’t fight it anymore.

When that bolt of terror hits, my initial instinct was to forcibly regain control of my body. I would fight to get my heart rate down, I would fight to stay standing, and I would fight the urge to vomit. More to the point, I was creating additional stress by trying to stop these things from happening. I was afraid of what would happen if I let the panic attack continue, so I did my absolute damnedest not to let it continue.

Rookie. Error.

It’s far easier said than done, but once you accept that it’s happening–it starts going away. It doesn’t hold power over you. The minute you realise that this attack isn’t putting your body in danger, there’s no need to fight it. The sickening thunderstruck sense is usually only a spark that needs more fear to grow, and that fear comes from fearing the symptoms of your own anxiety.

Panic attacks in this sense don’t last long for me anymore. Thirty seconds to a minute, long enough for that initial bolt to wash away. These aren’t generally caused by any identifiable trigger, which is what makes them different to anxiety attacks.

When I first started practicing this technique, I started by identifying the sequence of symptoms in the usual order they would occur, and how I could minimise any damage caused by them. Note that I did once split my chin open and break two teeth in a fainting episode!

So getting on the floor is crucial. When that bolt hits, I quietly and calmly lower myself to the floor and lie in recovery position. Then I just–let it do what it will until it’s gone. Every time I do this, I reinforce the understanding that these attacks can’t hurt me, and the next one is easier again.

An anxiety attack? Well. That’s another thing altogether.

ACCCUTE ANXIETY

On the surface, ‘accute anxiety’ or an ‘anxiety attack’ looks much the same as a panic attack. It hits fast, hard, and if it spirals out of my control you can bet I’ll end up on the floor.

The primary difference in my definitions of panic and anxiety attacks, is what causes them. An anxiety attack usually occurs in response to something. An unkind word from someone else, making a dumb mistake, being surrounded by too many people, or just the insane amount of reflective surfaces in Target.

Just as a panic attack will feed on the fear of the attack itself, anxiety attacks also need fuel to keep going. Problem is, there’s plenty of that! And it’s fuel that is a lot harder to dismiss, especially if I’ve done something spectacularly dumb.

Feelings of being stupid, inadequate, incompetent, isolated, crazy, weird, and other horrible thoughts about myself are usually circling about in that blender-like brain feeding the fire.

Of course I’m hyperventilating, curled up in a corner, having a breakdown because I am a completely useless piece of shit. 

And other charming things to say to yourself in crisis.

These can often feed into meltdowns, which just makes for a splendid day.

Symptoms include, but are not limited to: fast breathing, elevated heart rate, tight chest, crying, nausea/vomiting, diarrhea (fuckin’ yaaay, right?), tremors, inability to speak, cold sweats, clouded vision, heavy limbs, and a critical reduction in my ability to function as a human.

But here’s something else fun about anxiety attacks:

I can be having one right in front of you, and you would never know.

The other major difference between panic attacks and anxiety attacks, is I have greater ability to mask my symptoms in an anxiety attack. They aren’t less intense, and I am deeply suffering under all that make-believe, but sometimes it’s enough to look like you’re coping until you can get somewhere and break down. Which… I think is the life goal of most autistic people too.

Basically, if I’m having a visible panic attack, the shit has really hit the fan. I do not ever, EVER like people to see me this way. If it’s visible, it’s beyond my ability to control, and that is a pretty bloody bad day for me.

But–how to deal with it?

If I’m in an attack, it’s too late for prevention. We’re in damage control.

If I’m in public, my first step is to excuse myself to a quiet place where I can let go a little. Hiding an anxiety attack is exhausting. I need to get down to the ground, at least into a sitting position. I do find lying down to be the most effective calming position, though.

The darker and quieter a place, the better. Otherwise if I have my phone and earphones, some gentle music with my eyes shut. I can ‘disappear’ into music until my rhythms return to normal.

The horrible thoughts that fuel the attack will continue until I’ve soothed myself a little, and get the energy back to fight them. I almost always don’t want to talk about it during, or immediately after, the occurrence. It takes me hours, sometimes days, to process what happened and how I feel about it.

Often I’ll feel like a failure for not being strong enough to stand it.

The trick with these ones is to be able to stop the flow of negative thoughts. Stop feeding the fire, and it won’t burn–same as panic attacks. Just a lot harder to put into practice.

PROLONGED ANXIETY

This is above and beyond the most dangerous, insidious form of anxiety I know. This isn’t the intense anxiety you know is happening to you, it isn’t the whirling stream of terrible thoughts that make you sick.

It’s the days of feeling gross, on edge, grinding your teeth in your sleep, with an unsettled stomach and no explanation why. It’s similar to that feeling you get in the lead up to a big horrible event, only there’s no end in sight.

It grows so slowly it feels normal. Like depression, it takes over your life until you can’t remember what a proper resting heart rate feels like. You don’t know when the last time was that you ate food and didn’t feel sick. You’re not sure how long it’s been since you had a night where you were able to sleep, and not oversleep. It’s wearing you out and every day you feel more tired and you don’t know why.

You don’t feel like you can breathe properly, but what is properly? The longer it goes on, the deeper you sink into it, the more the symptoms grow. You’re on a hair trigger, will you scream, cry, or murder someone? Small things are irritating when they shouldn’t be. You’re restless, hungry for a taste that only exists in your imagination, and at the same time paralysed. You can’t… you just can’t, everything is too hard for some reason.

When did this start getting bad? Why? What has happened? It doesn’t seem like there should be any reason for it, and by the time you realise–you’re drowning. Lulled into a false normal bit by bit. When was the last time you didn’t have a headache? What is the deal with all this farting??

Your body isn’t as it should be, you’re not relaxed even when you’re asleep. Tension builds on tension, until eventually it explodes in an anxiety attack. And boy oh boy are they worse when they’ve been brewing like this!

So—what do?

Practice extreme self care! I don’t know if there’s any better excuse for having your favourite things on hand.

For me, that means scented candles (jasmine, frangipani, and gardenia!), a good quality blend of tea, some favourite shower gels (peppermint, and neroli jasmine… not at the same time, obviously!), comfortable snuggly clothing, and other items of general comfort.

At work I find having something to fidget with releases a lot of that tension in a less explosive way. Fortunately my new work sells electrical components like switches and buttons and wires, so I’m always able to find something to carry around and fiddle with. My favourite so far has been about three inches of double-insulated six-core copper wire. It was so bendy and fun!

Music, movies, games, all of those things that I can ‘escape’ into until my body calms down are also incredibly useful. As is the company of friends and family, both virtual and in meat space! Blogging has also become a source of self-care, and a critical part of processing and understanding how my brain functions. I learn a lot about myself writing these, as it forces me to think about things in a different way than I do when the thoughts are swirling uncontrolled.

The other really important thing? Celebrate. Genuinely celebrate your wins, however small. Whether that’s climbing a mountain, or brushing your hair. If it’s a success for you, celebrate it. We get far too caught up in our losses at times, but if you remember to celebrate the wins, they’ll help balance out the bad when you need them.

And take note of what your body is doing, and where you end up. You may not pick up the slide into prolonged anxiety this time, or even next time. But, if you begin now, you’ll start noticing the patterns and each time you’ll be better placed to rescue yourself sooner.

How do you cope with your anxiety? What do you experience?

I would love to know! The more strategies, the better!

On the outer edge of coping.

It’s been one of those horror weeks. My birthday was Friday just gone, and I am still recovering.

But that was almost a week ago now, wasn’t it? Shouldn’t you be all good now? Yes–and cue that intense sense of shame that I, a grown woman, am still struggling to function so many days later. It isn’t the alcohol that does me in, I wish it was–that would be so simple to fix. Don’t drink, recover fast. My alcohol hangover lasted only into the Sunday afternoon.

The rest of it I’m still wrestling with.

I did an enormous amount of hours at work in the two weeks prior, more than I’ve done in a long time. Organising the party was more stressful than I’d like to admit, they always are. I don’t know if I’ll bother again. I’ve got nine years before I have to start thinking about whether to have a 40th or not, maybe I’ll feel different then. Maybe I’ll be different then.

It’s unlikely. I was always that kid concerned that no one would show up to her birthday party. I get very worried that I’m not enough, not important enough that anyone will want to. Then I make mistakes like inviting the sorts of people that I want to connect with, and get crushed when they decline. I really don’t know how else to communicate with people that I’d like to know them better, outside of work or other social groups. I don’t know how to indicate that I want to be friends, so this is my way. I invite them along and hope they’re also interested in knowing me better.

And I should know better than that by now, but I don’t and all the same mistakes were made. I had a very good night in the end, and the quality of those who turned up for me was fantastic. Still, it’s just as well that I got merry enough before the end of the night to notice the absence of a few people who I’d been very excited to party with.

Because that is my other problem, I never seem to know the difference between someone accepting to be polite, and those who genuinely intend to come. They all make the same sounds and I get equally as excited. Then the moment comes and I’m confused. Why do people do that? Why do they make plans they don’t intend to keep? How is it more polite to leave me hanging, than to decline?

I don’t know, but the whole affair is stressful. I know people have lives well outside of my little party, and the apologies I could understand. None of my attempts to widen my social circle were accepted, though, and every decline there felt like a slap in the face. All of these were people with whom I had discussed socialising with before. Nothing ever came of it. Nothing ever does. I go home after these discussions excited that maybe I’ll be invited out, but it never happens—I see the photos pop up on Facebook and wonder again: why do people talk like they want to make plans, and then leave me out?

The only reasons I can ever come up with is I am forgettable, unimportant or just a burden to have around. Not fun.

So that cycle plagued me, the deep sense of insecurity that almost everyone invited was not my friend by choice, but someone who I had tagged onto through my family. That I wasn’t able to generate my own party crowd, because the people I know here in town aren’t interested in socialising with me. It’s a heavy feeling, and thankfully one that was offset by being surrounded by truly wonderful people on the day.

It’s no wonder that with weeks of that, by the time the excitement died on Sunday I was destroyed. I’ve been clenching my teeth a lot, my whole face aches from it. I had panic attacks more intense than any I’ve had in a long time on Monday, lost my sense of time and became completely convinced that the overnight shift I’d signed up for was next week–and it wasn’t. This I didn’t realise until it was too late, and thus began the next spiral.

How was it that I could still be this confused, overwhelmed, and tired after just a birthday party? Not just the next day, but for two days after? I felt like an absolute failure as an adult, a failure in my menial retail jobs, and any hope I had of returning to full time professional work was now a knife that stabbed into my self esteem. Will I ever be able to do the sort of work I want to do?

I don’t hate retail, but if I’m going to spend my life working then recovering from work, the work should be something that at least satisfies me. I have to devote my energy to work, there’s no choice there–I need to pay rent. It just seems to be the same endless cycle of the same to go home, sleep, collect enough money to pay rent, and repeat. It doesn’t make any sense to me, but my one hope is that I will find a job that is worth that sort of energy. But–if I don’t even feel like I’m managing retail, then how?

I already got fired once this year for not coping with the demand of a professional job. I want so badly to believe I’m capable. That I don’t have to live in this cycle forever. That I can find something that makes me feel like a success, and not a barely-scraping-by pile of shit.

Reality is a bitch.

Right now, everything is too loud. I want to watch TV but the sound screams on the lowest volume. I went to the supermarket and came out shaking, even though I kept my sunglasses on while I was in the store.

My doctor would say I pushed myself too hard, did too much work too suddenly. But what option do I have?

I’m just trying to keep up here. I know it will get better, because everything was fine two weeks ago. Maybe I just got so excited about that feeling of coping that I really did just run myself straight into the ground. Even though I did far less than my sister does in an average week, here I am struggling to function. Feeling somewhere between nauseous and tears, wishing that I could just stop the world for five minutes and catch my breath.

Hating myself because I can’t seem to keep up, no matter how hard I try. I do alright for a while, and then this–I hit the wall. I crash.

I’m on the outer edge of coping. Not drowning, but nor am I swimming confidently. Getting through one minute to the next, building up strength to run headlong into the next wall. That’s how I do.

 

 

Uncomfortably rewarding: why I don’t hide the bad days online.

Over the past few months, I’ve come to alter the way that I blog and the way that I utilise my personal social media to show a more ‘balanced’ account of my experiences. We’re all guilty of posting only the best photos, of keeping our darkest moments to ourselves in an effort not to make those who follow us uncomfortable. I made the choice to break away from the ‘good-only’ approach to social media very consciously, but why?

When my experiences are good, I have the ultimate freedom to express them entirely. But when they’re bad? It’s a very public, and at times very uncomfortable, way to suffer.

Perhaps there are people who read this and think I’m utterly batshit for putting this material on the internet, where it can be found by people in my physical world (I link to each blog through my personal accounts, and there are other snippets of brutal honesty that go only to those accounts). What I post can be found by anyone who chooses to look: friends, family, potential employers, inter-dimensional beings from a future as yet undiscovered…

Am I mad for doing this? Probably. It’s a well certified fact that I am, in fact, delightfully weird. It’s not by chance though, it’s a decision I’ve made and followed through with after deciding the benefits significantly outweigh the potential for my writing to backfire on me.

First and foremost, I do it for me.

I would love to say that it’s based on some selfless desire to help others find their way through their own rough patches, but that would be a lie. The process of writing out and posting the good and bad in equal measure has become a method of self-care and healing.

Just writing out my experiences of the day takes the thoughts out of my head (where they are often whirling around in manic circles and refusing to find resolution) and into logical sentences. Once they’re out, I can begin letting them go.

Writing also forces me to think logically, to step back and analyse what happened and from that perspective I begin to see the alternate paths that weren’t immediately obvious at the time. Recognising those after the fact isn’t a bad thing–those choices are more evident the next time that situation rolls around, and I have avoided repeating situations because I know I have options. Writing also helps me cement information in my long term memory, so the lessons I learn are rarely forgotten.

It also provides an ongoing account of who I am at a given time, allowing me to look back and see the sort of progress that is invisible day-to-day.

The writing alone is only one part of the process. If it was, I could just as easily keep a diary and be done with it.

There’s a unique sense of responsibility that appears when I post something online. I have stated to the world that this is happening, and when the situation is an unpleasant one, it puts increased pressure on me to resolve the situation. Much like a writer might feel the need to resolve a plot point after a cliff hanger, even if no one reads a single word I write–the words are out there. The story must move on, must show progress, and it’s up to me to take actions that move toward a better point in the ‘plot’.

This is why you’ll often see a ‘balancing’ post after my less positive entries. I feel this weird drive to look deeper and find the better side of things, to share that reality alongside whatever self-indulgent misery I’ve put forth. While I do that as a responsibility to the ‘audience’, it balances my brain as well. If this was just a diary, there wouldn’t be that drive. In fact, without the public nature of social media, this would read more like a My Chemical Romance album.

It would be the opposite of the ‘only good’ social media view, it would be the ‘all bad’ private thoughts of depression. Neither is the whole person, and the latter is a mental trap too easy to fall into.

Social media also provides me with a platform through which I can explain myself in the best way I know how: through text.

I don’t give away a lot in my expressions. I especially don’t like to talk about how I’m feeling when how I feel isn’t good. The words don’t like to come together, I don’t like bringing the mood down, and if I’m in someone’s company I’d much rather be distracted and enjoying myself than talking about things I struggle with. I also have this horrible habit of breaking into tears whenever I feel ‘exposed’ in conversation. Text allows some distance and ability to craft explanations that are coherent.

This communicative impairment doesn’t discriminate. If I’m talking openly about these sorts of topics, it’s because I’ve either reached breaking point (with the accompanying emotional explosion), I’m drunk (I talk far too much when I’m drunk. Just ask my brother-in-law!), or I am pushing myself (or being pushed) well beyond my comfort zone. This is just a function of who I am, and finding ways to communicate around it has helped immensely. It’s unlikely I’ll ever be comfortable with direct conversation regarding myself.

But once I have written about something, and posted it publicly, the nature of the information changes. It goes from ‘innermost private thoughts’ (and I am an intensely private person) to ‘information in the public domain’. Everyone I meet theoretically could have read the material, and I should expect to discuss it. I am prepared to discuss it. I have considered it deeply, I have opinions and ideas and further solutions that occurred to me after the time of writing.

Posting publicly effectively releases the privacy of my own thoughts and puts them in reach of open discussion. The more I do it, the more I’ve begun to feel comfortable discussing content that I haven’t posted. That has been amazing.

Being brutally honest about how I feel and why has been an exercise in freedom.

The secondary benefit is in how others respond to my writing.

It may not be what I seek to get out of this process of honesty, but each comment or like  or mention I get from someone who identified with my writing is the best bonus I could ask for. I never set out to inspire people (and I find it ridiculously humbling when I’m told that I have provided inspiration. Who, me? I’m a wreck half the time!).

All I aim to do is provide an account of who and how I am, as I go from good to bad and back again. The idea is to demonstrate to myself that there is no situation so bad that I won’t come back out of it stronger, so if that is reaching others and helping them feel the same? I’m pretty pleased with that.

It is a terrifying thing to do sometimes, to expose the complex and often confused nature of my thoughts. On some level I do feel an obligation to do it. As someone who was given an ability to communicate in written word to not use that ability to describe my experience (especially the features of my Aspergers/Autism) seems like a gross waste of ability.

The rewards of this public honesty have been huge. Even on my worst days, I feel more my ‘authentic self’ than I have in too long. It’s my life and it won’t be sunshine and rainbows all day every day, there will be posts that come that are uncomfortable and miserable. That’s life, regardless of mental state.

What’s important is that a better post will always be coming, and I look forward to sharing those immensely. I never did this in the expectation that my posts would be actually read, either, but I appreciate everyone following along on this quirky journey. You make it extra worth the effort!

Debunking the dangerous ‘lack of empathy’ stereotype.

On most desktop computers, there are separate switches for the tower (the actual computer, the bit that ‘thinks’) and the monitor where output is displayed. If you turn on your computer, but not the monitor, the computer can do all the work it likes–but nothing will be displayed.

I often compare computers to the autistic brain; I find there are a lot of similarities. This is one. It’s a gross over-simplification but it goes a long way to explain how autistic people are so often accused of being void of empathy. So much so that the cold and unfeeling autistic person has become something of a stereotype.

Autistic people are very capable of empathy. Our ability to display that feeling is impaired. Our computers are functioning, but often times the monitor is switched ‘off’… or on another channel completely (and trust me to switch to a television comparison now just to confuse the issue).

For me, it’s a case of the monitor being off most times. I have to remember to change the position of my face to reflect the appropriate feeling for the moment. It doesn’t come naturally. It’s a logic-based process that says, ‘You’re feeling happy now, you should be smiling!’ and so I turn the corners of my mouth upward.

Manual smiling can get painful, by the way.

There are times where my feelings are so strong and I’m so caught up in them that the expressions form themselves–but that’s rare.

I’m also chronic for the pseudo-condition ‘resting bitch face’, which is the tendency to look worried/tired/angry. This is just the way my face falls when I’m not giving it direction, and it doesn’t mean I feel the way it looks. Usually I’m so deep in thought that I’ve relinquished all active control of my facial expression. I could be having a hilarious daydream, but to the outside world it looks like someone’s upset my apple cart and I’m about to tear strips off the next person who bothers me.

For others, it’s less a case of the monitor being off and more a case of it being on the wrong channel. They may exhibit expressions and behaviour that make little to no sense in context with the situation around them. This could be misinterpretation of the situation, not knowing how to react in a situation (and giving it a best guess), or it could be as simple as the mind reaching a different emotional reaction to that which is normally expected.

I watch a lot of true crime specials, and the way people read each other after a homicide is troubling to me. So much that I hope I’m never directly involved in such a situation because (aside from the obvious) I worry that my lack of reaction, or incorrect reactions, would be misinterpreted as possible guilt.

If you think that’s paranoid and crazy, check out the Amanda Knox special on Netflix.

She’s not alone in being suspected because of her reactions. Lindy Chamberlain is another high profile case that utilised her behaviour after the death of Azaria and throughout the trial process as a sign of guilt.

I don’t pretend to know what happened to Azaria Chamberlain, nor am I convinced of Lindy Chamberlain’s guilt or innocence. I’m certainly not claiming that Chamberlain and Knox are autistic, either, only that their lives have both been upturned in part because they did not react the way they were expected to.

And there lies a very dangerous expectation, for everyone, and especially for  those on the autism spectrum. The expectation that every person will react to a situation in a similar way, and that deviations from that expected behaviour are wrong.

Greater understanding that there are infinite ways to respond to a situation, and that each person will respond in their own individual way, will set free so many from fear of their own personality. Clinging to ‘sameness’ is a human desire that continues to fuel fear and hate, between races, religions, nations, anyone of difference.

We are so much more diverse than social expectations allow.

In regard to empathy, we all feel it. We all respond to it differently, we all show it differently. Some are able to disregard it. Others are slave to it.

The notion that autistic people are not capable of empathy is a myth. It’s far more common that the autistic person is less capable of displaying it.

In some cases, myself included, the feelings of others are present in the air. Like a solid, electrifying force that grows with the intensity of feeling. I know the feelings are there, I know there is an emotion being communicated, and I feel it so keenly that it burns.

But I don’t understand it. I don’t have the ability to take that force, break it down into its parts and know that what you are sending me is happiness, or anger, or fear. It’s another language, one  I can’t interpret, and the force of it leaves me paralysed and unable to act.

My own feelings, I have so many of. I feel deep sorrow, and boundless joy. I don’t always know what to call them, nor do I always know how to deal with them. They lie behind a face that moves as I tell it to, but they are still there.

I repeat. They are still there.

And what to do about it? I don’t know. I like to know when my behaviour isn’t what’s expected, and perhaps this comes from a place of wanting to fit in, to be seen as ‘normal’ among others. But isn’t that just as damaging?

After all, if I put on a successful mask, learn to behave as others do–if we all conform to this expectation–how will any of us learn to embrace and understand the true diversity of the human mind?

Some things, I will change. Some things I won’t. My reactions, expressions and the way I approach the world is my own. Even if that is to have no visible reaction, that’s simply how I am. I cannot be judged from the outside. Knowing me requires conversation, patience, and a mind open to the idea that not all body language speaks truth.

I have feelings as much as any other person, autistic or not. It just takes some digging to see them.

How I compensate for my lack of social understanding (and how that also is a trap).

One of the key stereotypical aspects of autism/aspergers is the inability to read the finer points of social interactions. It’s true of most people I know with an ASD diagnosis, and like any autistic feature it presents differently in each individual.

There is, I’ve discovered, a secondary issue that comes with this lack of social awareness that develops as autistic children become autistic adults. It seems to be more common in those with an internal presentation, but who am I to say I know what goes on in anyone’s head?

The problem is this: we are aware that we have social deficits in reading situations, and overcompensate.

Deeper understanding of an interaction isn’t natural to me. It doesn’t arrive in a neat little package at the time, I don’t listen to someone’s words and thing ‘they mean something else’ or ‘this is definitely genuine’.

Instead, I take in the information and react to it on face value. If someone says they’ll do something, I nod and agree–yes, they will do it. If someone delivers a back-handed insult, disguised as a compliment, I’ll take the compliment first. Perhaps I’ll get a small inkling that there was something else going on… but I won’t know instinctively what the person was actually saying.

Not until later.

Deciphering the ‘true meaning’ of an interaction is more like wading through a literary text and picking out the themes and symbolism to work out the author’s message. It’s time consuming, inexact, and based on the premise that the other person put as much effort into coding the message as you did to decode it.

Everyone does a little of this after-process, especially after odd interactions. For me, it occurs after almost every conversation. It keeps me up at night, trying to work out what cues I may have missed and how I should have interpreted a situation differently. It’s an active process that requires quite a lot of brain-power to complete.

And it’s the basis for oh-so much anxiety.

Because here is the problem. I am aware that I have an impaired ability to decode situations on the fly. I also have thirty years experience in social interactions, and learnings from those that can be applied to analysing new situations.

My tendency isn’t just to miss the meaning of an interaction as it takes place, but to read too far into interactions when I analyse them later.

I find myself critiquing word choice, stance, tone, level of distraction–all things that I know academically can communicate extra bits of information. I look back to past interactions with that person and try to match up the similarities like a forensic investigator.

So I’ll get offended by throw-away lines that I decided were ultimately an insult because of how the person ordered their words; my default setting is to err on the side of caution and look more for threats I may not have seen.

Sometimes I get it right. Sometimes I even see things that those gifted with intuitive understanding of interactions don’t see. My process is based in logic and prior learning, so if human beings were rational things it would always be spot-on.

This compensatory method of deciphering interactions after the fact is a dual-edged sword. On one hand, it allows me to mask my lack of understanding by providing me with the information I missed at the time. On the other, my awareness that I miss things drives me to look for more than is actually there.

External vs Internal: moving away from gendered profiles in autism.

There are problems inherent in the way that ‘female autism’ is being researched. Curiously, they appear to be the same problems that occurred in the initial research and diagnosis of aspergers. The same language and biased research issues that led to the missed diagnoses of so many autistic women looks set to repeat unless we become aware of the implications of gendering a condition.

Understanding that females can also be autistic is an understanding long overdue. The misconception that autism and aspergers were conditions that ‘belonged’ to males was caused by a focus on males as research participants, and lack of understanding in how autism presents in different individuals.

As researchers and diagnosticians continue to build a ‘female profile’ of autism, we should be cautious of the suggestion that this presentation only occurs in females. It doesn’t. Just as some autistic women have a textbook ‘male’ presentation, so too do autistic males display symptoms that are currently considered ‘female’.

Therein lies the danger. By qualifying a set of symptoms as either ‘male’ or ‘female’, we encourage diagnosticians to disregard a potential diagnoses because it does not fit the assigned sex of a person. Those who research their particular presentation before seeing a therapist may feel there is something extra ‘broken’ about their brain if the ‘gender’ of their symptoms does not match their own gender expression.

Instead, I propose an alternative way of classifying the two autistic profiles that escapes gendered language.

Through my research and personal experience, I believe in every person (autistic or otherwise) there is a particular factor that describes how that person will react to most situations. As autistic people frequently find themselves in situations that are at ‘odds’ with ‘normal’ culture, how that person views their place in relation to the world is highly important.

It comes down to this: external versus internal.

External autism is how I would describe the textbook ‘male’ presentation. When the individual discovers a difference between how they operate and how the world operates, that individual is likely to come to the conclusion that they are right, and everyone else is wrong. This leads to a more open and authentic presentation of their autistic symptoms. They display more obvious social disconnect, are more likely to act in appropriately, less likely to bow to social convention, and often have a level of self-assurance in all that they do.

Internal autism (or the basis of the ‘female profile’) is the opposite. An individual of this presentation, when faced with a disconnect, believes the world is right and they are wrong. They are more likely to ‘learn’ social rules as a means of becoming ‘right’, to be crippled with self-doubt, to mask behaviours in a way that complies with social conventions, and are often misdiagnosed or missed completely due to their ability to play the part.

Both sides of the autistic coin are weighted with their own pros and cons, and through this lens of internal and external we can see how typical autistic behaviours manifest differently.

An externally autistic person, upon being caught in a conversation they find utterly boring, may well just say “You’re boring me now” and end the conversation with little understanding (or desire) of how to politely exit a conversation. An internally autistic person caught in the same situation may instead ‘play along’, nodding as they feel appropriate.

The externally autistic person takes charge of the situation as they believe they are correct, while the internally autistic person lets majority rule.

I would love to hear your thoughts regarding this classification of autism. On the mark, or miles away? How else would you classify autistic types?

Definitions of success and self.

Everyone defines success differently. For me, I always felt that I had the best chance of finding success and fulfillment through a career. This worked with my drive to improve and dedicate myself wholly to the place at which I was employed. Even  as a supermarket supervisor, I felt the importance of my role in looking after the cashiers and ensuring customers had a wonderful in-store experience.

I never could just clock in, clock out, and collect the cash.

Other factors in life that I might have deemed as points of success, like having a family or obtaining a driver’s licence, always felt out of reach. It wasn’t that I wouldn’t like to have them, but my attempts to achieve those goals never went anywhere.

Driving is still the same intimidating rush of cars and lights and sounds, confusion in coordinating my body to push the right pedals at the right time, and intense worry that I will misjudge or react incorrectly at a crucial moment.

A family requires a stable foundation, usually the relationship between two people who have a strong enough connection to support dependent beings. My relationships to date have been short, almost laughable–and with minimal hurt after the break up. Sometimes because I’m already bored by the partner in question, and in all cases because I was never significantly romantically connected to them in the first place.

I struggle to connect with people in general. I can like them, admire them, have a strong desire to be around them, and even love them… but never have I connected with a person in such a way that I needed their partnership. Some partners I kept past the point of boredom purely to say that I had a partner. Others, I feared that I would lose as friends if the relationship broke down.

Maybe there’s some miracle person out there who is the exception to the rule, but to date I’ve not experienced anything that would give me confidence in having a family. Not to mention the questions that follow on, whether I would be a fit mother (I certainly couldn’t be a stay-at-home mother), and would I be able to connect with my children if I had them?

I fixed all this with the idea that I would fulfill myself with a career first, and if the rest happened–it would happen. I threw myself at the university wall repeatedly, always starting well and eventually crumbling as I became overwhelmed by the constant demand. I am still debating whether to go back this semester, or finally accept that the system is beyond my capabilities, especially as an online course.

The biggest step I took toward this career dream actually occurred last year, where I managed to find employment as a marketing coordinator. But the pressure of that job too wore me down over time, until I could no longer keep up with what was required and I was let go. Partly because the business couldn’t afford to invest in me anymore, and partly for my own good–my manager recognised the toll it was having on me.

Which leaves me now seeking work that will satisfy my financial needs. I’m leaning toward retail positions, this is what I know, but I also know that it won’t be long before I become dissatisfied and empty in the repetitive role. Retail has always been a means to an end, a stepping stone on the way to something else. A way to pay the bills until I found work that made me feel proud.

There’s nothing wrong with working retail. I’ve never believed there is, but I know it doesn’t make me happy in the long term. Success to me is finding that place in life where I can be happy. A job I can be proud of isn’t about the type of work, or the money paid, but knowing that I didn’t settle for roles that paid the bills. It’s knowing that I kept reaching until I found my place.

Since being let go, I’ve really questioned my capabilities. I’ve had to let go of the idea that I could work in overly tense and fast-paced environments. I’ve had to let go of the idea that I will ever be an in-demand marketing or PR executive. The pressure would likely break me. I wasn’t able to handle what was required in a small business; my shiny dreams come with dark realities.

So that leaves me here, at a loss. Wondering if I am truly only capable of carrying out these retail jobs, and what that means if it’s true. The possibility that everything I ever wanted to be is unrealistic and beyond me—hurts more than I can say.

My career was supposed to make up for my failings in other areas. I don’t know where to go from here.

What causes autism? Some theories.

Debate over what causes autism, and how to prevent it from occurring, remains inconclusive. Theories range from biological factors, to medical interference, and even to how a child was raised in early life.

The vaccine myth.

The theory that vaccines cause autism is unfortunately popular.The article published by Andrew Wakefield in 1998, which suggested the Measles, Mumps, Rubella vaccine (MMR) was responsible for behaviour regression and developmental disorder, was repeatedly refuted and eventually retracted in 2010.

The vaccine theory relied on two factors: one, that children often displayed autistic symptoms around the same time as receiving the MMR vaccine; and two, that autism had become ‘epidemic’ as vaccination became common practice in society. The more likely reason for the surge in autism diagnoses is a better understanding of the condition, changes to diagnostic practices and increased awareness–particularly among educators.

That autistic symptoms arise in the same developmental period as the second dose of the MMR vaccine (usually around the age of 4) is purely coincidental.

Even if the vaccine theory was correct, and I don’t believe it is, I fail to understand the logic of refusing to vaccinate children to decrease the risk of developmental disorder. Autism isn’t exactly a fun bag of kittens every day, but it is perfectly possible to live a long and happy life as an autistic person. Even those requiring extreme care are capable of being happy and healthy people.

Refusal to vaccinate increases the risk of contracting avoidable (and deadly) disease, both to the unvaccinated child and those who are unable to be vaccinated for medical reasons. It just doesn’t make sense to me.

Vitamin D deficiency.

This one is interesting, because I have extremely low levels of Vitamin D. I know, I know–I should go outside from time to time.. but maybe that’s not the only factor? I take supplements daily, which I find gives me the energy boost I’m often lacking.

Women who are deficient in Vitamin D during pregnancy are more likely to give birth to a child with autistic behaviours.

Inability to properly absorb and process Vitamin D may also be one of the many genetic factors that contributes to an autistic profile. Deficiency in Vitamin D may not be a cause, but a symptom–and perhaps lead us to a genetic marker as we build a greater understanding of how autism occurs.

Genetic factors.

This is the theory that makes the most sense, both in logic and in my own family experience. Autism is a condition of particular traits, that by their combination and intensity in a single person cause that person to diverge from what is known as ‘neurotypical’ (NT). You could think of this combination as a recipe, almost.

In most cases, and definitely in mine, you can spot autistic traits across the family of a diagnosed person. While the behaviours may be similar, they may not have the same intensity, obsessiveness, or rigidity of the autistic person–but they’re certainly there. Some in the family may have an autistic trait or two that is extremely intense—but not any others.

These traits are spread among parents, aunts, uncles, grandparents and beyond. When enough intense traits are passed down to a single person,  that person becomes diagnosably autistic.

This also explains why many people feel everyone is ‘a little autistic’, which is in some views true–and others false. Milder examples of autistic behaviours are common among the general population.However, while an ‘allistic’ (non-autistic) person may understand elements of a behaviour, they are less able to understand how multiple intense traits affect an autistic mind.

So you may think of autism as caused by the right mix of ingredients passed to an individual.

Interestingly, my genetic profile is significantly different to those of my undiagnosed siblings. I am the only right-handed child, the only one with grey eyes (the others are brown), and of us four I have the shorter, thinner-boned build. These genetic differences between me and my three siblings hint at my getting a number of recessive genes, some of which may have been autistic markers.

Brain compensation theory.

This does fall in with genetics as well, but an interesting study on autistic children and their non-affected siblings discovered that unaffected siblings also have a similar neurological signature to their autistic sibling.

Decoded, that means that the structures of the brain used to process particular information have a similar decreased ability as compared to children without an autistic sibling. However, unlike both their autistic sibling and their typically developing peers, unaffected siblings showed activity in other areas of the brain.

That suggests that unaffected siblings have created ‘other’ pathways through the brain to achieve neurotypical behaviours. I love this, because it shows just how adaptable the brain is. It also firms up the nature of autism as genetic, and explains how siblings can exhibit similar traits to their autistic sibling but not at the same intensity. Some compensatory structures may not be as complete as others, meaning that the trait will be more present in that sibling.

I find this especially interesting, as my sister is highly sensitive to tags and seams in her clothing. Far more than I am! That sensory sensitivity may be a trait that her brain has not fully countered.

Nurture and autism.

I’ll talk a little about this, because I think it’s relevant. Autistic behaviours can be adjusted over time, especially among those in the Aspergers category. I believe that autistic people are capable of building their own compensatory structures in the brain. We need to find our own way to achieve stability. This doesn’t mean a cure–simply working with and around our weaker points for a solution that suits us.

Early intervention and parenting methods are critical here, which is where I feel extremely lucky. Though I didn’t know I was autistic until a few months ago, my parents were not the sort to give in to picky eating habits. You ate what was on the table, or made your own food. I believe the firmness of that rule is one of the primary reasons why there are so few foods I don’t eat–I was never able to avoid anything long enough that it tasted wrong/unpleasant.

As an adult, I allow myself to not eat the things that really do bother me: pork, any meat with bones still in it, any meat that still resembles the animal it used to be, celery, and zombie toes broad beans. The list of things I won’t eat is actually quite small. I will pick around bones, but I really don’t like it. I’ll also eat mashed potato, though the texture bothers me most times.

I believe my lack of serious food aversions is mostly due to being encouraged to try a wide variety of foods as a kid, and also my curiosity regarding taste. New foods and drinks intrigue me, so I have to try things at least once! Or perhaps, it was simply never a severe factor for me.

We were also raised in a very structured and supportive environment, and the only real upsets I can recall having usually involved things like moving house, moving school, and other unavoidable moments of change. For the most part, my family life synched well with the parts of my autism that liked things to be a certain way, and for things to happen in a way that was consistent and predictable.

We went to school through the week, to bed at a particular time (even when I was in my last years of high school, I had a bed time. I hated it, but looking back it was another part to the structure of my day that I could rely on), there was often sports on Saturday morning, and during the football season we would generally catch up with family friends to watch the game and eat together.

So I was lucky in a lot of ways, that my family created an environment that curtailed some of the more annoying aspects of autism, while providing the structure I needed to feel secure. Though at the time, it was simply how our family operated–not any concession for an autistic mind.

I give in to it more as an adult, especially with food and clothing. I buy my own, so if I find that I’ve purchased a shirt that is uncomfortable and distracting to wear–it’s my own loss if I never wear it. The same goes for food. Clothes get rotated to the back of my wardrobe and eventually donated to charity. Some are too itchy, some feel too restricting, and some just make me irritable and I can’t articulate why. I did get myself to wear skinny jeans, though I prefer not to–and I still won’t wear shorts. I don’t even know why I won’t wear shorts, I just hate them.

I can make these choices as an adult, because I have been through the process of attempting, tolerating, and know for myself if it’s worth persisting. I also know I can work around things, like eating all the peas first when someone mixes them with the marvel that is corn (why do people ruin corn like that?). I’m in a space where I can do things in my particular way, and so long as it doesn’t hamper my ability to get things done, there’s nothing wrong with that.

I’ve rambled a lot and gone way off point–each autistic person’s ability to adapt and build compensatory structures and strategies will depend on the severity of the symptom, awareness of the individual in working toward the goal, and the age of the person. It can be done, though, it’s up to the individual to decide whether there is value in being able to eat a food, tolerate a situation, or wear an item of clothing. Sometimes the level of work to get to a point of tolerance isn’t justified for the outcome, or the time and number of exposures it would take to achieve the goal (remembering that each exposure will cause some level of distress) isn’t worth it. While it’s definitely ‘possible’, it may only be after thousands of exposures and unknown distress.

Are there any other theories you’ve heard regarding causes of autism? I’d love to research them!

 

How losing my job may be the best career move yet.

On Friday, I was let go from my job.

For those who work to pay bills and live, this may sound like a bit of a nuisance–something frustrating rather than devastating. Challenging to lose the income, but provided you didn’t burn down any chance of a good reference, incomes can be replaced.

I live to work. I’m not happy just paying the bills–I want more than that. I want an opportunity to use my strengths, to have a real impact on a business in the way that only I can. I want to learn and to grow, to sharpen my skills and keep making magic.

This job, which I began last March, offered all of that and more. My official title was ‘Marketing Co-ordinator’, but as the business was small, the range of responsibilities was everything from administrative assistant to tech support. I was in charge of writing all content for the website, monthly newsletter, additional eblasts, social media, case studies, developing  printed collateral, arranging promotional items and gifts, co-ordinating the IT system and acting as a gateway between staff and our IT company, answering phones, taking data and wrangling it into charts, telemarketing, searching out contacts to call, managing the client database, answering phones and live chat queries, setting up new equipment (usually laptops and phones), and whatever else needed doing on a particular day.

That’s how it is in small business. Regardless of your title, you need to be prepared to drop everything and do something well out of your job description when required. Over time, it became obvious that I am the world’s worst telemarketer, so that–and a few other tasks–were removed from my role.

My primary skill set is writing, and my key weaknesses are time management and multitasking. Having not held a position like this before, the sudden expectation to juggle so many competing priorities (and co-ordinating these with up to four external companies) was a challenge.

But–I loved it. Even when I felt like I was drowning in a sea of tasks, I loved it. I got to see reactions and web traffic rise as my informative posts went up on our site. We saw our online enquiries triple. We’d done a lot of SEO work, so it wasn’t just my work that got results, but we got results. I was a part of that.

I was good at the work, but I wasn’t fast. I got tasks mixed up easily, I forgot things (even if I had them written down on my calendar) and I made stupid mistakes. After a few months in the position, I realised that I was far more fatigued than I should be, and that began the investigation into myself that resulted in my autism diagnosis.

Did that autism result in being let go? Possibly. Small businesses change priorities fast, tasks come up with little notice and need to be turned around fast. That’s not me. As an autistic person, that chaotic workflow is irritating and makes it hard to focus. I like the time to consider things carefully, to implement them in the exact best way that I can. My work is slow, but the results are high quality. I need space between tasks to mentally ‘adjust’, I find it hard to pivot straight to the next thing. Sometimes I put more time and effort into something than it deserves, I can get ‘lost’ in research and design.

Though those are largely autistic traits, and yes–they interfered with my work–this wasn’t discrimination. Those traits are also facts about me, parts of who I am that will challenge me my whole life. Those same traits made it difficult to meet the performance requirement for my job, it’s that simple.

I grew a lot in this position. Learned things about an industry I knew little of before. Learned how to better work social media. Learned about myself and realised that for every dream I’d ever had, a high-pressure fast-paced glamorous career was never going to be healthy for me. Working 8am-5pm in this position four days a week was leaving me mentally fatigued, struggling to want anything more than sleep when I had time off.

I’d come back to Victoria to spend more quality time with my family. The job I loved was sucking away any desire to see anyone outside work. My fiction writing suffered when my creative energy was put toward making commercial floor cleaning equipment sound exciting. For all that, I still loved my job.

Losing it is a devastating blow. I’m not without options, and financially I’m in a great position to job search. I’m confused by some of the actions taken before that meeting, I’m upset at how only hours before I’d spoken with my manager (who would have known what was to come later in the day) where she discussed my plans for next week. According to my boss, she also felt burdened by the amount of help I needed in structuring my time and in determining what priorities came first. That she never said anything to me, rather,  that she acted eager to mentor me (and I did see her as a mentor) is a betrayal I just don’t understand. Why wouldn’t she say that I was being too demanding?

I need to let that go. The last lesson this job has to teach me may be the most important one of all: not blaming myself for this outcome.

I put everything into this job. I learned and I improved and I developed content that the company will continue to benefit from. I’m proud of that. I didn’t give up, I continued to hang on and keep trying, keep pushing to meet the demands of the company. I can’t do it–yet. As a small business, they don’t have the resources to invest in getting me to that point.

The decision to let me go wasn’t personal. They loved my work, there just wasn’t enough of it. They felt I was under too much pressure to deliver and that it would only get worse in future. For my health and their profit, it was best that I found something else.

I spent the weekend with my family, and took some time to feel sorry for myself. Tomorrow I begin the job hunt. I don’t know exactly what I’m looking for, but I do know a few things to avoid. I’m excited to see what’s out there, and what I can learn in my next work adventure.

This time, I think I will aim for more of a life-work balance. A job that I can love, but one I can ‘disconnect’ from after hours. Something that provides me with breaks for mental rest that I need to keep from burning out, and something that allows me to be myself.

I’m sad today, but looking forward to tomorrow. What jobs do you think I should try my hand at?

My diagnosis, and how it makes sense.

It’s like someone is in my face yelling at me in German. I can kind of grasp if they’re happy or sad, but I don’t speak the language enough to truly understand what is being said.

A few months ago I began a process that would ultimately change the way I view myself, and my place in the world. In many ways, I’m still trying to process what it means to me–and the conflict of whether to disclose this discovery to my wider world.

I have chosen to publicly disclose, and to do so here to anyone with interest in the subject. I do so in the understanding that there is a great deal of misconceptions regarding the topic, and it is my hope that through this disclosure I am able to create better understanding of my experience. This blog contains only what I know to be true of myself. There are as many presentations of the condition as there are people who experience it.

This is my experience as an autistic woman.

 

Say what?

Yes, you read that correctly. I have been assessed as presenting with enough significant traits of Aspergers Syndrome to satisfy a formal diagnosis. I don’t much like the word ‘Aspergers’–not so much for the Sheldon Cooper connotation, more I just don’t like the combination of letters in it.

One of the key misconceptions about those with Aspergers is that they are fundamentally more capable than someone defined as simply ‘Autistic’. In the DSM-5, the leading diagnostic manual for mental conditions, ‘Aspergers’ has been removed as an independent diagnosis. I like that this opens the door to a much broader understanding of ‘Autism’, the capabilities and weaknesses of those who experience it.

 

So–are you ‘high’ or ‘low’ functioning?

This is another reason why removal of the ‘Aspergers’ label is important. The idea that some autistic people are more intelligent, more capable, and more useful to society is dangerous. It leads us to expect that those defined as ‘high’ functioning should be able to adapt to the neurotypical world and survive without any compensatory methods. On the other end, it allows us to believe that ‘low’ functioning persons have diminished value due to their autism.

This is especially true of those who are ‘non-verbal’. That is, someone who is functionally able to speak–but experiences an autism-related block that prevents them from conversing in a ‘normal’ manner. Their inability to speak has no relation to their intelligence or what they can contribute to the world. Many are very talented writers and express themselves through text.

Autism is not fundamentally an intellectual disability, though it can be for some. Therefore, those with autism should be approached and classified according to our unique strengths and weaknesses. Just like anyone else.

I am neither high, nor low functioning. I am a person with an autistic brain.

 

Then… what is autism?

Autism is a different operating system. It’s a way of thinking that is atypical compared to the general population. It is the experience of looking at the world, and knowing you see it differently to everyone else on the same bus.

In practical terms, autism is a profile of intense strengths and crippling weaknesses. What those strengths and weaknesses are varies across individuals. Although everyone on earth has strengths and weaknesses, those with autism experience a much greater gap between what they are good at, and what they’re not so good at.

For example, a ‘neurotypical’ (someone with a brain that functions the same way as most) or ‘allistic’ (someone who is not autistic) person may be ‘good’ at running and ‘bad’ at cooking. An autistic person with those same traits would be ‘amazing’ at running and ‘horrendous’ at cooking. The difference in skill (or lack of) is much more pronounced in someone with autism.

For me, I am excellent at writing. This is my primary method of communication and of untangling my own thoughts. I’m great with music–I have a natural sense of rhythm and ability to play instruments with deep expression. I have mostly untapped artistic talent. I am wonderful at conducting deep analysis, I can research a subject thoroughly and output text that allows others to grasp the concept. I can argue almost any point convincingly–if I can do it in writing. I can teach myself to do things. I find something to get excited about on almost any topic. Don’t believe me? I can even get passionate about cricket. I am loyal, enthusiastic, and I love streamlining processes and finding ways to make things more efficient.

I sound pretty wonderful, huh? Here are some weaknesses.

I am downright shocking at communicating directly with people. I tire out fast and become unreasonably emotional when I’ve gone past my ‘limit’. I need extreme amounts of solitude to recover. I don’t deal with light or noise particularly well. My ‘processing’ speed is much slower than the average person–I often don’t comprehend what you’ve said until a few seconds after you’ve spoken. I can’t deal with too much verbal information. I need time to sit back and make plans for things. I don’t handle plans changing. I don’t like situations that are vague. Often, I take instructions too literally or fail to consider beyond the task that was initially asked. I almost always miss the ‘hidden’ meanings in conversations. I am naive, overly trusting, and very… very easily hurt.

 

How much of that is autism, and how much is just… you?

Some traits are more likely to present in autistic people, but for the most part, these are things that are experienced by most people. It’s the combination and intensity of these traits that defines whether a person is autistic or not. It’s also in the reactions to these traits where the clues to autism lie.

All of the things listed there as strengths are things I am exceptionally good at. All of those weaknesses have the capacity to (and have) interfere with how I relate to others and the world around me.

So let’s look at some of the traits in detail, and I’ll explain what I mean.

 

Obsessions and special interests

When someone says ‘Aspergers’, most people think of an uptight person who is fanatic about one or two topics. Thanks to The Big Bang Theory, they most often think of Sheldon Cooper. This is most often true of persons with autism.

My interests were simple. I love stories. I still love stories. I will go to the ends of the earth for a good story.

This began my obsession with books (and collecting books) and writing. I picked up the ability to read very early in life, well before I started school (thanks to excellent parents!). My obsession with words and letters is a sort of sub-interest to this, and it’s all sort of branched out into a broader love of linguistics, communication, and the history of the English language. It fascinates me. But it all started with stories.

This love of stories has also evolved into a love of TV, movies and video games. The creation of fiction is one of the most beautifully human things we have in our world. Through it we can imagine worlds beyond our immediate reality, glimpse into the future and revel in the past. We can escape where we are, imagine things greater, and even brainstorm solutions for problems that don’t yet exist. Writing is a form of pure magic.

Music was another early obsession. The first ‘favourite song’ I remember was  Lover [You Don’t Treat Me No Good No More] by Sonia Dada. I loved the deep vocal tones and the beat. The child-friendly tunes of Peter Coombe played constantly through early life, and my first favourite movie was Disney’s Fantasia. Music is a language of its own that captures stories both explicitly and imagined in the listener’s mind. On my worst days, music is a soothing force that brings me back down.

My third and most obvious obsession as a child was cats. I used to be able to list breeds and their  characteristics. I had books and toys and a collection of ornaments–if ever I rattled on about something (as ‘Aspergers’ is known for) it was about one of these topics.

These interests evolved and shifted over the years. I’m fascinated by true crime now, with psychology and technology. I like to know what features new gadgets have, how new apps can change the way we do things, and what goes through someone’s mind when they commit a crime.

I am also interested in what interests other people. I have a deep desire to understand what draws people to one topic or another, and thanks to my ability to find something of interest about almost any topic, I’ve discovered love for subjects that are outside of my general ‘sphere’ of interest. Much of this was sport related, AFL and cricket, but also crafting tidbits and politics.

 

Why research something you’re not really interested in?

Good question. That leads back to another trait: I struggle to make general conversation with people around me if I am not adequately prepared to do so.

It started as a means of ‘having something to say’. I feel a strong sense of disconnection even around people I’ve known a long time, and particularly those with whom I don’t share a common interest. Talking about my own interests is generally not advised–I find they’re very specific to me and not of great interest to other people. Plus, if you get me started I’m rather hard to stop.

I also don’t see much value in small talk. It was a part of the ‘cashier’ routine that I had to do for work, which I think cheapened it even more. In the job it became reflexive and ingenuine. People talk too much as it is, I don’t see any need to waste words about the weather when I could be making a proper and meaningful connection with the people who matter.

So I began researching tidbits of information that fell into their interests. Facebook makes this incredibly easy! Facebook is literally a feed of things other people are interested in, articles you can read and videos you can share. This is one of my best compensatory methods and is invaluable in helping me to begin and carry conversations.

 

Do you have emotions?

That’s another misunderstood trait. Autistic people often have trouble processing or reading emotions from other people, and also in expressing the emotions they feel. That’s not the same as not having emotions.

I feel the state of others around me keenly. It’s like a thick fog–I can’t avoid it. This ‘empath’ trait is sought after and is linked to emotional intelligence. Except in my case (and in the case of other empathically sensitive autistic people), although I’m getting the information–there’s not much I can do with it. I don’t understand it.

I understand the basics of it. Good emotion, bad emotion. Beyond that, I’m lost. It’s like someone is in my face yelling at me in German. I can kind of grasp if they’re happy or sad, but I don’t speak the language enough to truly understand what is being said. All I know is it’s right in my face and it’s damn uncomfortable. When others around me are stressed or upset, I begin to get stressed and upset because of the tension, and not knowing how to release or break it.

Like many autistic people, I don’t read faces, tone, or situations well. So all of that information is just confusing and makes it hard to cope. There’s a constant analysis going on in the back of my brain, trying to discover the meaning as it unfolds. This is a skill that is acquired over time and experience, and while I’ve got better at it over the years, it’s still exhausting and far less accurate than that ‘intuitive’ understanding that allistic/neurotypical people have.

As for my own emotions? They’re strong. Incredibly so. There are two forces here that make it hard for others to understand my emotive state, and one is simply that I am terrible at making the right face at the right time.

I am a severe sufferer of ‘resting bitch face’. Often I have to consciously change my expression to reflect happiness or sadness, and this I do solely for the sake of not looking ‘weird’. Left to my own devices, my face would rarely shift. The same is true of inflection in my voice, I have to remember to speak in a way that ‘matches’ how I should be feeling.

The second is practice at stillness. This is an unrelated and learned skill. When I was bullied in early school years, the first advice I got was to never let them see me cry. I went far beyond that and taught myself a poker face that (combined with inborn reduced expression) I presented to the entire world.

There are days where I am incredibly expressive. I express myself outside of facial expressions, too–I run and jump and spin and talk a million miles an hour. These are the days when I am most myself, and most comfortable being who I am. When I am being ‘weird’ I don’t have to be ‘still’ and I can let go.

I struggle with letting go a lot. A lot. Experience tells me that if you act outside of what is expected, only bad things will happen.

 

How do you handle conversation?

To be honest? Not well. Unless it’s on a topic that I know a lot about, or have researched, I struggle. My slower processing speed can make it very hard to keep up with the pace of a conversation, and before I say anything, it needs to be formed, checked for appropriateness, and rehearsed in my head before it leaves my lips.

If I don’t go through that process–you never quite know what I’ll say. I can spurt out irrelevant or even offensive things without meaning to. I have to actually think quite hard about what is okay to say in front of the audience I’ve got, and to word it in a way that can’t be misconstrued. When you don’t really understand the extra connotations that others spot in terms of word choice, facial expression and tone of voice (remembering that mine does not flow naturally!) it becomes very important to watch what you say.

There are so many social clues and contexts and hidden meanings that I just… don’t comprehend. It’s only recently that I learned that commenting on how nice someone’s food looks/smells is the same as asking for some. I didn’t know that–and I would often compliment my housemate’s cooking based on the sight and smell. Not in the slightest did I expect that I should be offered some. I just wanted to say something nice based on an observation. That food did smell good!

In short, any of those more subtle aspects of interaction I need to learn the same way as I learned to tie my shoelaces: with practice and experience.

Starting conversations is probably the hardest for me, especially if they’re about myself. Those of you who primarily encounter me through this blog and other online channels might think that’s absurd. All I do here is talk about myself!

In person, it’s a very different story. First, it’s much easier to start a conversation that is light hearted and that you know will be well recieved by your conversation partner. So if I start conversations, it’s more likely going to revolve around their interests.

The second thing you need to understand, is that I’m driven by a deep and unshakeable fear of rejection. I’ve had this constant knowledge all my life that I am somehow different, that I don’t function in the same ways as other people, and for the most part I’ve been deathly afraid of demonstrating that difference. I fear that when people come to know me as I see me, they will see ‘that’ thing that makes me ‘other’ and that will provide enough reason for them to turn away.

I’ve always wanted to be out of the spotlight, away from scrutiny, scared that any minute I will be discovered. It’s felt a lot as if I’m some sort of alien trying to masquerade as a human, trying to learn their ways and fit in but never quite managing it. Fearing every time I slip up and show myself that I’ll be hunted down and outcast once and for all.

That’s a pretty heavy belief to have when you’re seven or eight years old, yet it’s one of the oldest ones I have. I don’t remember ever feeling any other way. I didn’t believe I had a right to be myself, because what I was was obviously ‘wrong’ and didn’t fit here.

The people I struggle to talk to most are the ones in my physical realm. Online is online. Yes–I have amazing friends that I hold in very high esteem and my life would not be the same without them. But even so, if, when I reveal my true self to them, they shun me?

I can turn them off. The internet is full of block and delete buttons. The emotional cost will still be high, but I won’t run the risk of seeing them down the street. They won’t be at family gatherings. I can tell them anything I like with that safety net.

I also get to speak with them using a method that allows me the most clarity: via text. I very rarely speak the more difficult things. When I do, the right words never seem to fit in my mouth, or I sway the conversation to make light of things and change the meaning entirely. Spoken conversations never go the way they should. I always end up saying something I didn’t mean, or not explaining things well enough and the whole exercise ends up being pointless.

This blog allows me a medium. It’s open and visible to people in my physical and online realms alike. These are my words as I wish I could speak them, explaining myself in the way I’ve always wanted to–and far more powerfully now that I have some understanding of why I am the way I am.

 

What do you mean ‘slow processing speed’? You’re smart, right?

For a given value of ‘smart’, yes. I’m great at navigating photoshop, but at this point in my life I can’t drive. People far less switched on than me can drive, so why can’t I? That’s the trouble with the ‘smart’ label. It assumes that smart in one thing is smart in all things. I am definitely not. No one is.

I have definite intellectual strengths. However, it can take me a little longer to get there. How fast or slow you process things has nothing to do with intelligence.

It’s a bit like RAM in a computer. If the average person has 16GB of RAM, I’m probably running on 12GB. Therefore, I am less efficient in how I deal with things around me. My extreme sensitivity also means that a lot of that ‘processing power’ is taken up by interpreting information from external sources. So there’s very little left to deal with the immediate situation.

This is most obvious in conversation. I have particular trouble with ‘verbal information dumping’, or basically when someone gives me a lot of instructions or ideas in a single conversation. In transferring that information from the short term (or RAM) to long term (HDD, haha!) memory, there’s not always enough RAM/short term memory to store the information… and pieces get lost.

Thankfully, there’s also a weird ‘transitional’ memory that I’ve noted, which is kind of like a backup for the RAM/short term. It doesn’t catch everything, but often if it’s been a long day full of information or if I’ve been given a lot of options regarding something, during my next quiet moment I’ll take some time to go through all of the concepts that were presented and process them properly.

This is generally what I’m doing while staring at the TV, playing video games, or scrolling through Facebook. I’m going back through the day and consolidating my memory.

 

What do you mean ‘extreme sensitivity’?

My sensitivity to almost everything is perhaps the least known fact about me. Even to myself, I didn’t realise what the source of discomfort was until it was pointed out.

I don’t tune things out well. That dripping tap? The radio across the road? That bird that hasn’t stopped for the last hour? I hear each instance as keenly as I heard the first. I have exceptional hearing, and the same goes for my sight and smell. But as I lack the ability to subconsciously tune out background sensations, my attention is constantly split between what is immediate and what is not.

I’m sitting at my desk right now and I’m hearing that bird, the fan in my computer, my fingers on the keys, that weird sound of the sky at night, cars move up and doors open, the neighbours in their pool, the saliva in my mouth. All of these have equal sized pieces of my attention.

I can feel my foot pressed against the chair, my hair prickling at the back of my scalp, sweat drying on my forehead and how itchy my nose is (my nose is always so annoyingly itchy!), my chest aching from a breath I was holding, my one roll of fat resting comfortably in my shirt, my bra straps itching across my shoulder blades, my trousers stuck to my leg with the heat. I can feel how heavy I am and how my hands shake when they come to rest. Again, none of these are ever tuned out. I am always this aware.

My vision is even more intense. I’m highly sensitive to bright light, and the fluourescent bulb above is reflecting off the white walls and table and box in front of me, a sharp contrast to the black computer screen, keyboard and tower. The black lines are wiggling and jumping around, creating after images in green and purple. The text on the screen is wiggling about like it does. How I ever learned to read, let alone love doing so, is actually a miracle. The granular colours of visual snow are drifting about, as usual. I’ve never known anything different. I’m now aware of how much it drains me, and how important sunglasses are.

Often it feels to me like my skin has been peeled  away, leaving every nerve raw and exposed. Every sound is a booming cacophony, every touch is a hot knife. It drains and builds, reducing my tolerance to anything more until I literally can’t handle anything more. In those moments I need to escape. I need to drastically reduce the amount of sensory information coming in, or I will go into meltdown.

 

Meltdown? You have meltdowns?

Yes. That is the actual term for what I call ‘episodes’. It’s a release, an expression of being so incredibly overwhelmed that literally nothing more can be tolerated.

Mild meltdowns are shaking and crying, but they go far more extreme. Screaming into pillows and raking my nails up and down my skin, trying to distract myself from a weird feeling that I can only describe as thrashing around inside my skin. As if I can feel my bones shift violently about inside me, trying to get out. I can’t catch my thoughts in a meltdown, they’re fragmented and swirling in a hurricane. There’s lightning snapping at the synapses in my brain, making me think things I don’t want to think.

I am lucky, very lucky, that at the same time I often go into a sort of ‘paralysis’. I freeze and feel myself fighting under my skin, but come to no real physical harm. The desire for violent acts is there, I want to punch walls and kick glass and run out on the road and scream at cars–but I can’t, and I don’t. I don’t move until rational thought comes back to remind me how dumb those thoughts are.

Frustration is the strongest feeling. Frustration that I can’t control it. Frustration that I didn’t know where it came from. Frustration that this is a thing that doesn’t seem to happen to other people, and I must be broken for it to happen to me so frequently.

I experience some form of meltdown roughly once a week. A bad week will have them once or twice a day, some of them being very severe. The experience takes a huge toll on my energy and a long recovery time. Exhaustion also adds to the underlying stress that leaves me prone to meltdowns, so if one severe one occurs, more usually follow.

There’s no cure for this. No way to control it, but to observe how I’m reacting to the situation I’m in, and take steps to minimise overstimulation where I need to. It usually means stepping away in social situations, saying ‘no’ when I want to say ‘yes’, and generally avoiding too much sound and light than I can handle. That reduces the frequency.

They will always happen. That’s simply how it is.

 

Uhh… violent acts? That doesn’t sound fun.

It’s not. It’s really not.

Like many autistic people, I experience emotions at an extreme level. I react to situations in a very intense way that I don’t fully understand. There’s no real language to explain those moments. I know that I’m feeling something highly complex, and often there’s a strong desire to communicate what I’m feeling–but I’m left without the tools to do so.

One method of expressing this frustrating pain is to convert that feeling into a physical object, something that others can see and comprehend. It is in the world, it’s real, it’s not a figment of my imagination. Depending on my state of mind, the impulses range from scratching my skin to the above-mentioned running on the road.

I need to underline here that never in the almost-thirty years of having these types of thoughts have I acted on them any further than to scratch my arms and legs. Nor will I ever go beyond that. So much meaning is lost in the conversion from emotional to physical that it literally makes no sense to do so, and above all else, I am a highly logical being.

I have a ‘voice’ (not a real voice, but I often consider it a separate entity) that pipes up when intrusive thoughts jump their way into my brain. My more rational self poking holes into the violent suggestions that flash up like annoying pop-up advertisements.

The best example of this rational voice is from the day that the most bizarre intrusive thought suggested that I should take the office scissors and cut both my hands off at the wrists. I was having a bad day and feeling under a lot of pressure, things kept changing every other minute, and I was well beyond my limit.

Rational voice says: ‘Okay, so you very painfully cut through the bone of one hand with blunt office scissors… exactly how do you plan to cut the other hand off? You can’t use scissors with a bloodied stump, dickhead.’

I laughed. That’s often the case. Either rational voice points out how illogical/messy/plain dumb an idea is, or the gaps in the impulse’s logic are too hilarious. Either way, there has never been a chance of action on any of these more extreme thoughts. Nor will there ever be.

 

I bet you don’t like things changing around. Sheldon Cooper doesn’t!

I sure don’t. Some of Sheldon Cooper’s autism characteristics are ones that I do share. Rigid thinking and an inflexible sense of order are one.

I start my day with a sort of mental plan, a sequence of activities that will get me from waking and to the end of the day. I tell myself every morning that although I have this road map for the day, things will come up and I will need to adjust as necessary.

Haaaaaahahhaa. If only it worked that simply!

I get very frustrated with late changes to my plan. I’m quite okay with someone texting me 4-5 hours out from doing something that they’re now unable to, as that gives me enough time to process this information and adjust the plan accordingly. Texting me ten minutes before leaves me with a sudden gap in my mental schedule, and a sense of loss at how to fill it.

The same happens with being given activities to do. I need time to process that something must be added to my mental schedule, and time to figure out how I will best approach the task. Starting something the minute I’ve found out I need to do it is incredibly uncomfortable. It fills me with that unprepared sense of anxiety, not unlike the worry that you left the hair straightener on while you went shopping. I can do the task through it, but at the cost of that anxiety pushing me closer toward a meltdown. At the same time, the distraction caused by that unsettled feeling means I may not do the task as well as I normally might. I wasn’t prepared for this, I didn’t go in with a plan, and this is the result.

You might think it doesn’t matter, that not all tasks need a plan and approach–that I should just relax and do things regardless. In that case, you’re missing the point. Taking the time to mentally slot the task into my sense of order is how I am able to relax. I have a very defined system for how I go about the world, and the majority of it involves a period of consideration prior to action.

I even think for several minutes about what path I will take through the house before getting up to go to the toilet.

I don’t think there’s a single person I haven’t frustrated with this particular aspect of myself. Just ask my poor English teachers, who watched me sit in front of a blank page for hours before beginning to write!

 

So what is your ‘sense of order’?

Everything and everyone has a place and a way of being that I have come to expect. Changes to that can unsettle me very fast. One of my first major breakdowns spiralled from my family moving home–and I didn’t even live there at the time.

I get very attached to places and objects. Mum had the same microwave for so many years that their current one still looks wrong to me. I get upset when my favourite foods are discontinued. I hate when people change cars. Our local radio stations changed their names just the other week and I am not okay with it.

I love the idea of holidays, but the reality actually sucks. Everything is out of place at once. Christmas is a chaotic rollercoaster of visitors and nothing being the way it usually is. As much as I love the season and having people around, it’s not the norm and it becomes unreasonably stressful. During special events and holidays, I need far more time to recover than in an average week–purely because I have to keep re-creating my mental schedule around the chaos.

 

Do you understand sarcasm?

Another stereotype, and one that has a good real basis. I understand sarcasm from people I know exceptionally well. Sometimes. Not all the time. I understand sarcasm when it is hyperbolic and accompanied by a distiguishable ‘sarcasm’ tone of voice.

Our family is one that likes to tease each other in that good natured way that families do. I do it as much as anyone else, but even with family I have to second guess whether what they say to me is truth or joke. Or perhaps if it is a truth cloaked in humour. I never really know. I just laugh and try to think of something witty to say back. At least, now I do. I know that’s what is expected now.

Before I really understood that, I would shrink back or into a book and try to vanish. I would get offended or upset and retreat. What was fun for others was confusing and confronting for me, but I never knew how to express that feeling.

With people I don’t know, the confusion is a thousand times worse. Ask anyone who’s ever flirted with me–most of them get shut down so fast because I’m convinced that they’re playing some sort of joke on me. I get very defensive because I don’t fully understand what’s going on, and defensive is all I’ve got to protect myself with.

 

Do you hate social things?

Quite the opposite, if you’d believe that. I love having people around, even if it does get highly uncomfortable for me. There are certain environments that I hate, such as clubs and music festivals, but for the most part I’m extremely happy when surrounded by the people who matter to me.

There are ways I can push through, and the key one is alcohol. Alcohol dulls my senses and disables most of my filters, so I have a lot more processing power available to enjoy social situations. I refuse to lean on it as a social tool, but in situations where it is acceptable to drink and be merry, I do indeed drink and be merry.

The bonus of alcohol is that in disabling those filters, I’m generally more my authentic self and I don’t give a shit. It’s good training for being able to do that sober!

 

Why did you seek diagnosis?

I changed jobs, from a part time retail gig to a fulltime position as a marketing coordinator. Now, I have a long adjustment cycle for any type of change, but even when I normally should have been settled, I wasn’t.

I was experiencing difficulties I’d only encountered once before–when I was working full time as a network technician. I was tired and unfocused, unreasonably emotional all of the time, and I was struggling to get work done. When I got home, I would collapse on my bed and go straight to sleep. Most nights I was too exhausted to eat.

My productivity suffered for it, and I was beginning to think I was incapable of doing this wonderful new job. In spite of how much I loved it, I couldn’t seem to keep up with the changing priorities and multiple tasks that I was expected to have going at any given time. My brief foray into telemarketing was a complete bust, as I talked over people or said the wrong things, or worse–froze up when the conversation took an unexpected turn.

I had no idea what was wrong. I reached some very low points where my sense of worth was less than nothing. I contemplated returning to the job that provided me very little satisfaction and cried myself to sleep. How could I be so bad at something that I loved so much?

Many things happened in my fight to understand what was happening, but the key moment was an article shared on Facebook. It was on the ‘lost girls’ of autism, girls who were overlooked or misdiagnosed under the belief that autism isn’t something that occurs in females.

When I found a list of behaviours and symptoms, I just stared at the screen–and cried. I’d never read such an accurate description of my experience.

From there I went on a fact-finding mission, reading books and blogs and matching those experiences to mine. The result was almost always tears: of relief, because finally I wasn’t as weird as I thought. There were women out there just like me.

I wasn’t failing at my job because I was dumb. It was structured in a very different way to my previous job. I didn’t have the long gaps between short shifts to recover mentally. I was also working three times as many hours in a week, which is a lot for an autistic person. I shifted from being crippled by self-doubt to proud of what I had managed.

I am an autistic woman who is successfully holding down a full time job. Statistically, that’s quite an achievement! Many other autistic women are not able to manage full time work.

The choice to be properly assessed and formally diagnosed was a personal one. Because these autistic traits were causing issues at work, I felt I needed more than a Google search worth of answers. I needed solid strategies to help improve my productivity and create more balance in my life.

I did some research and located a psychologist who specialised in female autism. My experience with being allocated a local therapist was very hit-and-miss, so this way I was able to choose someone that I felt had the understanding I needed to give me useful answers. I read both Aspiengirl and Aspienwoman by Tania Marshall, and from there I felt reasonably confident that she could help me.

Tania Marshall does more than just diagnose, and as an adult, I needed more than just a label. Her view of Autism/Aspergers as a different wiring of the brain, and an opportunity to leverage super talents was one that I could get behind. Working with her I was able to understand both how I process things, and to begin building a road map toward better self management.

 

Are you glad you discovered your illness finally?

The process has been hard, and very confronting. The first thing I had to adjust on diagnosis was shifting the way I saw myself from having an ‘illness’ and ‘disorder’ with anxiety and depression, to being a person with a ‘condition’—a person with autism.

It may not sound like much, but the difference is huge. Autism isn’t something you cure. It isn’t something you can cure. I’m not sure I’d want to even if I could–it’s the source of my strengths as much as it is the source of my weaknesses. Like any other person, I need to manage those weaknesses and optimise my strengths. Unlike any other person, failure to take care of myself and to manage those weaknesses will result in a meltdown.

I’m very glad to have found this answer. So many things in my life make more sense through the lens of Autism. I struggle to let go of things before I fully understand how they occurred, so now that I have a better understanding of some of the more shameful events in my life, I can finally forgive myself for them. I finally know how and why they occured.

I can finally stop thinking of myself as broken, stupid, and a failure. Instead, I have been someone trying to survive in an alien world, living under the incorrect assumption that I should be able to survive the same way as everyone else.

I can’t. I need my own way, and that’s perfectly okay.

Importantly, I am not ill. I am just different.

Diagnosis for me meant that I was able to see more clearly the experience I have. It gave me the language to describe it to others. It gave meaning and hope that I could not just eventually be free of the more damaging effects–but manipulate my strengths into superpowers.

I always was and always will be autistic.

 

Isn’t everyone a ‘little bit autistic’?

Yes… and no. Everyone has traits that are commonly found in autistic people. But to say that everyone experiences them in the same intensity and with the same consequences as an autistic person is to completely disregard how painful and frightening a meltdown can be.

You might not like that itchy tag at the back of your shirt. For me, it will itch and itch and itch until I either escape it, or I break down.

 

Were you vaccinated?

Sigh. Yes. As you’ll notice, I also didn’t die of measles, mumps, or rubella.

The vaccination-causes-autism myth is completely bogus. There was never a time in my life where I was not autistic. The rise in autism diagnoses is due to the greater understanding of autism and its traits, not the increase in vaccinations.

Autism is primarily genetic. For any autistic person, there are family members who display fragments of autistic traits. Those traits are passed on, creating a profile that carries enough autistic traits for the individual to be deemed diagnosably autistic. The chance of my own children, should I have any, being autistic is incredibly high.

I will never understand the argument against vaccination on the grounds it causes autism. I would much rather this, than a preventable illness.

 

If you’re autistic, shouldn’t it have been caught in school?

For boys, this is most often the case. Girls are diagnosed on average two years later–and more and more women are discovering themselves at the age of thirty or higher. These older women (myself included) were in school at a time where the idea of girls being autistic was still a foreign one.

What happens in a lot of undiagnosed women is a cycle of not coping, where the woman is fine for a time–and then everything falls in a heap. There’s time for recovery, and then it begins again. It goes on until the woman goes into what is known as ‘autistic burnout’ or ‘autistic regression’.

 

Autistic regression?

Basically, a surge in autism symptoms. The individual is too run down or burned out to tolerate the things she did before, in the way she did before. Compensatory strategies that used to work are no longer as effective, and meltdowns become more frequent and more intense.

This is what drives most women to seek more answers. For me, changing my job was what drove me into a state of autistic regression, and I’m still trying to dig my way out of it.

 

Why can’t you just shrug it off and keep going?

Well-meaning advice suggests I should be able to tough things out, and push through. Some days, yes, that’s possible and productive. It’s not a strategy for the long-term, though.

Constantly pushing past my limits, not listening to my body when it demands rest, continues the cycle of not coping. It results in recurring burnout, each episode worse than the one before. In women who were not fortunate enough to be diagnosed, who continued trying to achieve things in the same way as their allistic peers, that burnout became permanent.

Nervous breakdowns, permanent fatigue, and critically reduced tolerance to sensory input? That’s definitely not a life I want to lead. So taking care of myself now, tolerating what I can and taking the time to recharge when I need to is highly important.

I need to accept myself as an autistic person, and make decisions accordingly.

 

How else do you cope?

I do a lot of things to cope on a daily basis. Wearing sunglasses (including inside at work), taking breaks during social activities, and having something I can hyperfocus on to ‘recharge’ if I can’t step away–those are some of the basics.

When I get home, I change into comfortable clothes that don’t cause excess sensory input. I spend my lunch breaks in a dark room, and you can usually find me resting with my eyes closed. Not asleep, but processing and blocking out the light for a while.

I get my nails done professionally, partly because it feels good and I like the uniqueness of it. It makes me feel like I stand out for the oddball that I am. But also because it flattens the tips and allows me to release pressure by scratching, without doing any damage. I get glitter polishes because watching the light sparkle is soothing to me, and can help stabilise me when I don’t have the ability to retreat.

I try to walk a line between avoiding things that induce meltdowns, and maintaining an active life. That’s a balance I’m still learning.

 

How are you still rambling?

I honestly don’t know. I hope this gave you a bit more insight into my world of Autism. I would love to answer any questions you have, or hear your own experiences.