Tag: mental health

Want confidence? Own your weirdness.

Want confidence? Own your weirdness.

When you don’t, won’t, or can’t conform to what is considered socially ‘normal’, it can be extremely hard to develop a healthy sense of self worth and confidence. The war between who you are and what society expects you to be can be devastating, especially for those who choose to sacrifice or hide the most unique parts of their identity in return for fitting in.

This raises the deepest of personal questions: how much of your ‘self’ is it okay to give away to find your  place among others?

The answer lies in how much value you place on social acceptance as opposed to self acceptance. If it is more important to you to fit seamlessly into the fabric of society, and if it makes you happy to do so, there’s absolutely nothing wrong with training yourself to be the person you want to be.

There is no person on this earth that doesn’t compromise a little of their personality in exchange for an easier social life. However, for those who are deeply uncomfortable with changing larger aspects of their self, the path to acceptance (confidence and sense of worth) can feel impossible. It can feel like a struggle against nature, trying to force a brain to think and act in a way that makes no sense to it.

It can also feel like  a whole lot of failure when that effort comes back with no reward. The difference between yourself and others, who seem to find those actions so much more natural (or they are much better at pretending) feels vast. It’s isolating. This article applies to anyone who feels different, but especially among those on the autism spectrum it often feels like you’re an eternal outsider.

An alien. Unable to properly communicate and become part of the world.

Fighting that is hard. Fighting to be human when your instincts are alien is exhausting. Shutting down actions and responses, analysing every detail of your presentation, closely examining everything you do, before and after you do it–all of this to learn to be something you’re not, and you know it. It’s disheartening.

If you’re not prepared to change who you are for the sake of an arbitrary social norm (and why should you?), it’s time to drop that goal in favour of a better, long-term path to confidence.

Self acceptance.

Taking a strengths-based approach to self acceptance means looking at yourself objectively, drawing out all of your positives and negatives, and choosing to love where you are strong and take steps to manage where you are weak. This can be nigh on impossible if you’re in a depressive state, so it may help to work with a friend who knows you well.

Include any mental illness or ‘weirdness’ you think you have. Even if you are working toward recovery, the prevalence of anxiety, depression, and other mental conditions among some of the world’s best and brightest suggests that your thought patterns have unique properties that are not common. Loving yourself because of those patterns (rather than in spite of the illnesses they make you prone to) is a huge confidence boost.

Remember that wording matters, too. How you choose to talk about yourself and to yourself makes a huge difference in how you feel.

For example, as a highly anxious person I am often concerned that something terrible is about to happen. I could say that makes me ‘paranoid’, or ‘obsessively distracted with fear’.

Or, I could love that extra alertness I have and say it means I am highly aware of my surroundings. I am more likely to spot a potential threat than those around me. That awareness is valuable now. That doesn’t mean I give up on training myself to function through periods of intense anxiety. The negative behaviours that come with anxiety still need to be managed, and that comes with time and practice. In the meantime, I’m not anxious over being anxious about being anxious. Why?

Because I see the strength it provides as well as the weakness.

Autism is full of these balanced negatives and positives. I’m not the most socially savvy person, but I see the best in people and what they could be. I can get highly and destructively fixated on a task, my ability to multitask is terrible–or, I am tenacious with a high productivity rate in a focused state.

It’s all marketing, really. Once you’ve successfully built a positive view of yourself, and once you believe it (this isn’t about twisting facts or cherry picking details, those positives are there, we just get so caught up in the idea of an ‘illness’ or ‘disorder’ that we fail to see there’s anything good in our experience at all) you will be in a position to market yourself to the external world.

And you know what? For all the social pressure to conform, the world loves weird. So long as it is presented with confidence and positivity, show where you are strong and how you can manipulate that to be valuable and there it is: the holy grail of self and social acceptance.

There’s very little point in working against your brain. Unless your brain is pushing you towards the wrong side of the law, or toward actions that are truly damaging–there are always exceptions. But for the most part, you are the only you this world has and there is no good reason you should have to sacrifice that. Not if it doesn’t make you happy, not if the sacrifice is only for the sake of others who can’t tolerate a little difference.

If you’re an alien–so what? Own it. Show everyone the best parts of being an alien, and look for the best parts in others. Work with your brain, not against it. The less time you spend going against simple harmless behaviours, the more time and energy you will have to devote to the behaviours that you do want to reduce.

I’d love to hear about the strengths you find in yourself, especially those related to a mental illness, disorder, or ASD!

Comment them below to help others view the positives in their neurodiversity.

On a hard road to a better place.

On a hard road to a better place.

The moral of today’s story is that no one knows your body and brain the way that you do, and it’s extremely important to back yourself if you don’t think a solution is working for you.

In the case of medical and psychological issues, your doctor can advise on the best course of action–but cannot intimately know the response (or lack of) from that action. This goes double for illnesses like depression and anxiety which are not as measurable as other physical conditions.

This doesn’t mean ignore the advice of your doctor. Your responsibility as a patient is to adhere to your treatment plan and keep your doctor informed as your body responds to treatment; the doctor’s responsibility is to evaluate the effectiveness of the treatment and determine if or how it should be changed.

When any part of that process breaks down, the well being of the patient is compromised.

I was first diagnosed with severe anxiety disorders in 2010, but it wasn’t until mid-2011 that I accepted medication as part of my treatment plan. The choice to take medication for a psychological disorder is deeply personal, and my first strategy was to see if counselling alone would work.

It helped to a point, but the reality was that the chemical balance in my brain didn’t allow enough space between a ‘trigger’ event or thought and the panic that trigger produced. Coping with anxiety is almost a sport–you see a ball coming at you, and in a split second you need to decide how to move your body in order to catch that ball successfully. Or be hit in the face with it. For me, medication slowed that process down enough that I was able to look objectively at the triggers and the thoughts that occurred, and deal with them in a rational way–before the panic hit my system.

In other words, I had the time to catch the ball.

My initial refusal was based on the belief that medication only offered the option to ‘numb out’ the feelings of anxiety or depression. I never wanted that. I wanted to learn how to cope with the onslaught of triggers and process them in a healthier way. This was (and still is) the over-arching goal of my mental health plan: to develop mental strength with the assistance of medication in the aim to be able to complete the same processes without it.

That is my goal, and those are my reasons for choosing medication. I don’t seek to judge anyone who chooses against it, nor do I judge those who accept they may never be without it. Those choices are entirely theirs to make, and if it helps them live well, that is what matters.

Initially I was prescribed Lovan (also known as Prozac).

Actually–that’s incorrect. My first script was for Lexapro, but within an hour of my first dose (which was a sub-therapeutic dose) I had an intense adverse reaction. But for the fact I lived at the time with a former ER nurse, I might have gone to the hospital. I was sick for three days. The dizziness was so intense that I couldn’t handle being upright, and had to half-crawl half-slither to the toilet to avoid passing out or vomiting. My very bones felt sore. It was like the world’s worst hangover met man flu.

I spent three days in bed, eating very small plain meals, and watching the Babar movie–a DVD I’d bought some months ago for the nostalgia.

I was terrified to go back to my doctor for another devil treatment. Fortunately, supportive friends dug their heels in and marched me back where I explained to my GP the incredibly bad reaction (which she didn’t seem to think was possible on such a low dose, but I wouldn’t accept any future in which I persisted with the medication). Then I was prescribed Lovan.

Adjusting to Lovan was an odd experience. I suppose it was unpleasant, I was quite nauseous (not to the level I was with that single dose of Lexapro, but enough to feel queasy at the thought of food and my appetite was greatly reduced), shaky, and felt ‘off the planet’ more often than not. Luckily I was on holidays, I don’t know how I would have coped physically in my job at the time. But mentally, the adjustment phase was really no comparison to the hyper intense anxiety that I was experiencing at the time.

Then one day… it was like…

Okay, this metaphor is going to get giggles, but it was like I could finally take my bra off.

Bra-wearers everywhere know there’s a unique sense of relief when you finally get home, put your feet up, and undo the blasted thing. Air rushes into your lungs, you feel free and unrestricted. And comfortable.

For the first time in a long time, I felt comfortable. I could breathe. The shaking in my hands stopped, I no longer felt that I was a split second away from tears or anger. I had the space to process my environment and turn away the thoughts that gave me trouble. With the help of an excellent clinical psychologist, I began cognitive behavioural therapy, where she taught me how to identify what was meaningful and what was not. How to retain control of myself in a situation where I could control nothing else.

My most memorable conversation was after a workplace incident where a senior staff member had upset me to the point where I’d had an intense panic attack. Just an hour into my eight hour shift I went home. I told this story to my psychologist, sure that she would validate my course of action. Instead, she said something I’ll never forget.

“You let that woman steal seven hours pay from you?”

The next week, instead of going home sick again, I spoke with my manager about the incident and with her help resolved to no longer be on the same shift as that staff member. Learning to think logically about the world, about the choices I could make for myself internally and externally, has played a huge part in how I react to depression and anxiety now.

Whether I could have achieved the same without the Lovan is difficult to say. I certainly don’t think I could have done it as fast, or as effectively without it.

The problem with psychological medication, even a very effective one, is that they often cease being effective. This occurred around two years into my taking Lovan. My dose had been increased once when it first became apparent that I was ceasing to function, and as the symptoms persisted my doctor and I made the choice to try a different product.

I was put on Effexor XR, 75mg daily. The process of weaning off Lovan and stepping onto the Effexor XR was horrible. Lovan requires extra time to exit the system, due to how it metabolises in the body. Over a period of three weeks, I changed medications. I remember it keenly, because I was at this time having more difficulties at work (at a new store I’d recently transferred to). I was still seeing my psychologist when I could afford to.

But I didn’t feel any sense of relief from the Effexor XR. There was no ‘bra off’ moment. The side effects of adjusting to the medication ceased, but that was about it. My life hit a smoother patch, and it wasn’t until the next difficult moment that I sought my doctor’s advice again.

I stated in that appointment that I didn’t feel any effect from the medication. My anxiety had remained low, but depressive symptoms were more evident than ever. I’d left my long-time job as a supermarket cashier and was struggling in a job with another company that refused to give me reliable hours. My doctor suggested that the difficulty was coming from there, and not from the medication being ineffective.

This is where I should have first stuck up for myself. Yes, my circumstances were difficult–and absolutely that was having a strong influence on my mental state. However, I knew the difference between how I had felt in rough times on Lovan, and how it felt now. When Lovan had been effective, I had the ability to function in spite of circumstances. At the time of the appointment with my doctor, I was crumbling under them. Mental strategies I had worked on with my psychiatrist weren’t able to help, as I didn’t have the ‘space’ around the problem to process it effectively.

The doctor said persist, so I persisted with the Effexor XR.

Around a year after first being prescribed Effexor XR, I moved interstate and back in with my parents. Not long after that, I sought out a doctor for support in dealing with the same anxiety and depression that had been present since stepping off the Lovan. As with anything, it came in waves and breaks that let me feel like I was okay for a time, but it always returned with great intensity. This was the primary reason that I argued the Effexor XR was ineffective–why was I experiencing such catastrophic recurring depression while on a medication designed specifically to alleviate that?

This new doctor agreed, and looking at my prescription, was confused. The dose I’d been on for over a year was (according to her) a dose only given for a week or so as patients adjusted to the medication. Normally it was doubled once the system began to tolerate it, and what I had been taking all this time was not enough to be therapeutic. She immediately doubled my dose, and once again–I felt no better or worse.

I still don’t know what is ‘high’ or ‘low’ for Effexor XR. At another appointment, with another doctor (once I finally found a doctor in my hometown that I felt comfortable with), I broached the subject of switching my medication. I was now on 150mg daily, which according to this doctor was ‘quite high’ and she was very cautious of upping it any further. She supplied me with a list of medications that she believed might be worth looking into. As some of them are not eligible for the Pharmaceutical Benefits Scheme (the system that subsidises medications in Australia) she suggested I investigate them and decide which I would like to try next.

This is really when I should have acted, as here was a doctor that believed I was feeling no benefit from Effexor XR and was prepared to assist me through switching to a new medication. The timing, though, was bad–in that same week I got an offer for a full-time dream job. If I switched medication, I would be in the worst stages of withdrawal and adjustment at the exact point I started work. I put it off, and when life got smoother again I forgot about it.

As you do, when things are going well. You assume it isn’t broken.

But the cycle repeats, and repeats–the new job caused additional symptoms to surface, and I obtained a referral to a psychiatrist. I wanted to start from the beginning, to explain everything to an expert in medicine and psychology. I didn’t feel my medication was working, and I hoped that he would be able to help devise a treatment plan that better addressed my areas of concern.

For an exorbitant amount of money, what I got was a diagnosis of depression, a strong implication that it came from some sort of family abuse, and a script for a higher dose of Effexor XR. I left feeling cheated. Not only did I already know I had depression, I knew that of all the possible root causes, my family was not one.

From the beginning of our session he questioned my relationship with my family, and kept returning to that same line of questioning over and over. I could almost see his conclusion in his eyes, this dead-set belief that I had been abused as a child but wouldn’t admit to it. Nothing could be further from the truth. I may have felt disconnected at times, but never unloved or unwanted. Yet he persisted with this idea, and more than that–he pointedly dismissed any concerns I brought up as ‘part of who I am’.

Most of these concerns I now know to be Aspergers/Autism, but this psychiatrist was determined to reach the answer he wanted. I took my new script, and refused to book a second session on the way out. He had nothing of value to offer. I probably should have refused to take more Effexor XR as well. My dose was now 225mg daily.

And it still. Did. Nothing.

The troubling reality is that for over three years now, I have been taking this medication for one reason: to avoid going into withdrawal. It has created its own need. In those three years I’ve not experienced any relief that wasn’t also tied to significantly smoother life circumstances, I have not weathered any storms better than I would have without it, and while I pride myself on being strong (and I have survived and accomplished a lot!) not one bit of it has been due to the medication.

No doubt Effexor XR is a miracle and life saver for others, but it hasn’t been for me. The tendency for doctors to simply up the dosage and hope for the best is typical of psychiatric treatment, and not the fault of doctors themselves. Everyone responds differently to different levels of different medications. Perhaps at 225mg I would have experienced relief, the only way to know what is effective is to see what happens.

Finding the right medication is a little bit of knowledge, a fair amount of trial and error, and an enormous amount of luck.

This time, I’ve tried a different approach. I know that I experience both depression and anxiety, and they feed off each other. They both feed off negative obsessive thoughts, usually to do with low self worth. I have a number of other obsessive traits, and a number of compulsive traits that do make things challenging.

For instance, I currently have it in my head that I’m going to make cookies. I can’t do it right this minute, because I don’t have the necessary resources. But I can’t get the thought and the desire to make cookies out of my head, and this obsessive thought triggers the compulsion to buy anything and everything needed to make cookies. Even if I think I have something already at home, I buy it anyway.

But I may not actually make the cookies for months. I might even know while I’m buying these items that I won’t have the desire or drive to actually bake for quite some time, but I need to get the resources now.

And this happens with everything. I decide I want to have a nice bath, so I purchase all sorts of bath goods. Tools for a new hobby. New sketch books, pencils, clothes for a particular occasion, make up, kitchen items, I become obsessed with completing these arbitrary ‘collections’ that I need to achieve a particular task that my mind won’t let go of.

The cookies are just one example–and I will make them, I am damned determined to now, of how these obsessive thoughts can drive compulsive behaviour. Now imagine that same level of obsession as it focuses on negative factors of the self, as it takes anxiety triggers and refuses to let go of them.

I believe that the key to alleviating both my depression and anxiety is in reducing that obsessive thought pattern. I can effectively refuse the arguments put forward by the obsessive thinking, but I’m not able to stop the thoughts from returning. It is a function of Aspergers/Autism, so it’s unlikely that I will ever completely free myself of it, but I can learn to reduce the severity and the effects.

This is something I will address with my psychologist, but as I am also looking to move away from Effexor XR, I did some investigation into what medications other female aspies found useful.

I found the results… very interesting. I read a lot of accounts from women who had found Lovan/Prozac effective for a limited time, and who had negative experiences on Effexor XR. This validated my belief that from the very start I didn’t feel it was working as intended. Many of these women had come to the same point of taking Effexor XR to avoid going into withdrawal.

I will repeat again, though: Effexor XR is an excellent medication when it works for you. None of this is evidence that it doesn’t work, just that there are people for whom it is less effective. Trust your body! Only you truly know if it is working or not.

I read on to discover what medications these women had switched to, whether they had found anything that was equally or more effective than they had found Lovan to be. Most of them mentioned sertraline, marketed as Zoloft.

Interestingly, Zoloft is especially effective in reducing obsessive and compulsive behaviour, which I have identified as a key factor in how my anxiety and depression develops.

So back to the doctor, this time armed with information and a direct request to be put on Zoloft. After taking everything into account, she agreed that Effexor XR was absolutely not working for me, and that Zoloft was a good logical choice. I feel especially confident with this choice, which may be more effective than any active ingredient. Even if the result is a placebo effect, it will be an effect that benefits my life–and that is worth it.

This is my last week of taken Effexor XR. Withdrawal from Effexor XR is… horrible. I have missed doses, had situations where I was unable to get my script filled in time, and it hits you like a truck within hours. Because I am still taking some, it hasn’t quite hit yet. I’m not looking forward to when it does.

Dizziness, nausea, ‘body zaps’, extreme irritability, elevated anxiety and intense mood swings are just some of the things I can look forward to on my journey this week. But, as I am currently working fewer hours due to circumstances beyond my control, now is the time to do it. The adjustment to Zoloft will be similarly unpleasant. Anyone who thinks that medicating a mental illness is an ‘easy way out’ has no idea what is truly involved.

There is nothing easy about adjusting to psychiatric medicine. It takes weeks of feeling like hell, and only after months do you see any true result. If you see a result.

But the rewards outweigh the risks, in my opinion. If I can reduce the occurrence of obsessive thoughts, so much of my life will be freed up. My wallet will thank me, for one! I will be able to reduce compulsive behaviours that are harmful, or that reduce my ability to function. It may also help me to be more flexible when it comes to making plans and adapting to changes.

I feel good about this. I’m glad I finally pushed for the change, and as much as this change over period is going to suck, it will be worth it.

Medications don’t work the same for everyone. So if you’re truly not feeling any benefit from something, it’s important to really back yourself when talking to your doctor. Only now do I feel ‘validated’ in my belief that the Effexor XR wasn’t effective. I should have believed myself and pushed for change earlier.

Here’s to a hard road to a better place!

 

Why mental illness is not an excuse to be an asshole.

Why mental illness is not an excuse to be an asshole.

This doesn’t apply to 99.99% of those diagosed with a mental illness.

However, the 0.01% that it does apply to are a major contributing factor to the ongoing stigma and misinformation regarding mental health.

It’s as simple as this.

Mental illness is not licence to be an asshole.

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Does that sound harsh? Yes, there are conditions where it can become incredibly difficult to maintain proper social conduct with others, but for any person who grasps the concept of good and bad behaviour, let me say it again:

Mental illness is not licence to be an asshole.

For a while, I had a friend by the name of Mia. Mia had some very genuine mental health issues. Those who falsely claim to impaired mental status as a scapegoat—that’s a whole other blog. She suffered from deep anxiety and chronic depression (we both did at the time), struggled to leave the house more often than not, and was a type two diabetic. She had also been diagnosed with aspergers.

At that time I wasn’t aware that my own mental situation was also an autistic one, so I took it for granted that what she told me regarding autism was truth.

She said that occasionally she needed to info-dump on people, ramble on until she’d finished the topic–and that I liked. I wasn’t always wholly interested in the subjects, but I do love listening to people talk about their passions. I do recognise this need to over-explain and tell stories as they happened from beginning to end, and if you do happen to get me started on a subject I love… you may be there a while. This blog (and the length of the blogs!) is testament to my need to just get words out at times. Some of the things she described were perfect examples of aspergers.

Some, I now recognise, were not.

I don’t remember what the disagreement was about. Like many aspies she had considerable difficulty accepting alternative points of view, and would argue her point viciously. More than once she became so aggravated by the intensity of the discussion, she turned the conversation to personal and unnecessary attacks.

There’s nothing particularly wrong with that. Arguments get heated, things get said that aren’t nice. It was what would happen after the situation had cooled and olive branches were being extended that I was never completely okay with.

When one half was apologising for poor conduct, at a point where a return apology was expected, she would give this instead:

‘Well, I have aspergers so you just have to accept that I’m like that.’

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And for me, at the time, I didn’t know enough about what might be going through her mind to really comment. So I left it at that, and over time she demonstrated repeated disdain for the feelings and general existence of other people. In understanding that aspergers causes social issues that involve missed cues, we did suggest that rather than blaming her brain for being a twit, she accept her behaviour and apologise for it.

Because that is the difference between someone who is an asshole, and someone who is not. Both can screw up, but only assholes will seek to blame their behaviour on factors outside of their control.

Others, including the neurodivergent, will recognise behaviour that is unacceptable. It may have to be explained, the cues may need to be highlighted, but these people are willing to work on their behaviour.

You can probably guess what she said when we suggested that if her behaviour was out of her control, it might be something to talk to her therapist about working on.

You got it.

She saw aspergers as an explanation and excuse for any behaviour that upset or hurt those around her, and expected us to simply tolerate it. I highly suspect some of these incidents weren’t aspergers-related, but greed-related actions for which aspergers was a convenient excuse–and that is another story.

Yes, mental illness can lead us to be less than our better selves. It can explain why something occurred, but should never excuse it. You have the choice as to how you handle what happens next. Whether you take ownership of your actions and work towards bettering them, or expect those around you to absorb the impact of your less-than-okay is what makes you an asshole or not.

Not your mental health.

My diagnosis, and how it makes sense.

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.

Inverse

Inverse

So far this week has been horrible. I tried to look after myself over the weekend, finding quiet spaces and times out to breathe and reduce the rising sense of tension that frays the edges of my mind. I couldn’t get drunk enough on Saturday to overcome the sense of crowding and noise, only for the couple of hours that the AFL grand final had me entirely transfixed on the screen could I block it out. At least that meant no hangover on Sunday, even though I wanted to stand up in the middle of the restaurant we went to for breakfast-lunch and scream.

Roaring air vents, a hundred conversations, cutlery tapping and plates clinking all around me. I couldn’t think of a good enough excuse to leave the restaurant, so I stayed. Some of it I spent with my hands over my ears, trying to block the bulk of it out.

I hate doing that. I hate it. First, it’s weird. I look like a freak. And it’s rude. We’re supposed to be having a family thing and stupid me is bitching about the noise level. The restaurant is full of other people coping with it just fine. I have to suck it up. By the time we leave, my head is thumping and I feel nauseous.

Monday was wrong from the start. I was exhausted. Not from lack of sleep–I caught most of that up–but so drained that my eyelids kept fluttering shut during the marketing meeting. It was an early start day for the first work day of the month, and I was good and organised. Awake and ready in time, a huge bowl of breakfast to keep me sustained (it didn’t work) and a taxi booked to take me there with enough time to gather my notes from my desk and start.

Taxi was across town, and on the way to getting me, encountered road closures due to minor flooding. Instead of having time to settle and get my things together properly, I rushed in exactly on time. I spent the rest of the day battling with myself, trying to keep myself focused on the tasks I needed to do.

Monday night was the worst, though. My brain loves to strike when I’m weakest. Asleep. I have extremely vivid dreams, so much that I often can’t tell the difference between them and reality. Only going through the events and identifying those that couldn’t possibly have taken place sorts out what happened and what didn’t. They sit in my mind like memories, complete with smells and sounds and tastes. And the feelings that went with them. I’ve found myself in trouble before where I believe something, a conversation or an action, has taken place–only to realise later that what I’m recalling is a memory.

I spent months… maybe years? Petrified my parents would discover this one terrible, horrible, awful thing I did. I felt sick every time I thought of it. I told myself every day it couldn’t have happened, it wasn’t possible, but every moment it felt like I was going to be discovered and punished. I think I was around eight at the time.

Monday night’s dream involved a former friend, who in the dream I believed to be my best and closest ally, telling everyone around me that I was crazy. Don’t date me. Don’t let your children around me. Don’t put anything fragile or precious into my hands, don’t risk yourself being near me. I was cursed, and the curse I carried could be passed on.

The crushing betrayal of discovering she was the one behind it is still with me. I can’t shake it, no matter what I do. And as for her message in the dream? It’s an insecurity that occupies a dark corner of my mind. Who on this planet would trust the care of a child to a woman who needs an alarm to tell her to eat regularly? How purely selfish and cruel would I have to be, to create a child knowing it had a high chance of inheriting the same faults that I have? How can I ask anyone else to live beside me when I would run if I could?

Stupid things set me off. Simple tasks. Things a monkey could do, and yet I fuck them up. So much that just being asked to alphabetise and file paperwork now makes me feel ill. I don’t know how I’m making these mistakes, it’s not hard. I think I’m putting things in the right place, only to discover later that I haven’t. I hum my way through the alphabet to work out what goes where, I utilise space to form piles by first letter and sort those piles, I break down the task to the easiest to manage microlevel–and I still fuck it up.

I can disprove the existence of God in a philosophy essay, I can research something to death and find a way to present what is unique about it to a potential buyer, but… I can’t alphabetise fucking paperwork. It comes back to one of those questions that has stalked me my whole life: How can I be so smart, and still so stupid?

Not that I ever feel smart. What I have is a head  full of mostly irrelevant information. Usually things no one wants to hear about and that are only of interest to me. It’s reality that is more telling, and in reality, I seem to get everything wrong. I say the wrong thing, I don’t think things through (or at least, I think I have–but didn’t come to the right conclusion). I don’t think to do things that I’m told are common sense.

Whatever I do, it comes with the same jarring sense of having fucked up. Again. Being the weird one. Saying the dumb thing. What’s the point of knowing about contemporary Australian serial killers when you can’t interact with people? There’s always a rule I seem to be missing, something that makes it glaringly obvious that I’m faking my way along. I try to remember the rules to all the different occasions, but it’s a lot to try and manage.

Maybe everyone feels stupid like that. It’s not just how I feel though, it’s what I do as well. I was the girl who put three hundred dollars worth of frozen items into the fridge, because a manager told me over the phone to ‘put it in the fridge’ and I was too stupid to think around those exact words.

And you’re not allowed to have those sort of mistakes if people think you’re smart. You’re too clever to do something that foolish, so it has to have been deliberate. Or that you didn’t care. Or you were selfish, inconsiderate, more concerned with other things than the task at hand. It can’t ever be that you’re actually just stupid.

Most days I would give up every bit of my alleged intelligence just to have a conversation and not be ticking off ‘appropriate’ behaviours in the back of my mind. Not be questioning every word out of my mouth. Not be distracted and annoyed by cacophonous background noise. To talk about the weather and bounce from one mundane topic to the next without relying on a set of answers that I know are expected by the other person.

To be able to articulate the things I want to express during a conversation without the words being misconstrued! To know what is useful to tell other people and when to tell it. To just… be able to have a conversation that is less comfortable without ending up in tears. I don’t even know why it happens. It just does. Sometimes because I’m frustrated, there are things I want to say… but they’re not in words. They’re not available to me. They’re snippets of feelings and colours and a twisting in my gut.

It annoys people. It’s not the right reaction. Once again, I get it wrong–only I don’t know how to stop it from happening. It just starts and then the only option I have to avoid it bothering others is to remove myself from the situation. People keep telling me I need to be less sensitive, but I don’t know how. How do you turn that off? How do you stop every feeling from being a rush of happiness, or a crushing heaviness? I try to mute it where I can, but that’s just turning down the external volume.

I still feel it. I still have to deal with it. Along with the noise and the light, the constant questioning of my own behaviour, learning rules and remembering to say the right words and do the right actions. Managing deadlines at work, coming up with new and interesting copy, the constant interruption that is the stupid phone, getting more things wrong and making more dumb mistakes, emails, and trying not to freak out at all the headlights when I cross roads. Then weekends with people that I dearly love and feeling horrible when I have to find a quiet space because surely…

Surely.

Fucking surely I should be able to manage this.

But the days just cycle through, one overwhelming and exhausting day after another. It’s not like I’m doing anything special or hard. Plenty of people manage far more and do it fine. Why can’t I? What’s so wrong with me that I can’t manage these regular things? Why does it always end in me breaking down?

I don’t know.

I really just… don’t fucking know.

Good days happen!

Good days happen!

Today I’m having a good day. I’m not entirely sure why, there’s nothing amazing or stand-out about today that makes it much different to yesterday (which was less good). Sometimes the days just are and I have to roll with it.

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Maybe it’s because it’s Friday, or it’s just one day until the Bulldogs play the Giants for a place in the AFL Grand Final (I am so excited about this game!), or because the social media page I manage for my company reached 75 followers (they were at 51 when I took over in March), or it could even be because this morning I handled a work situation extremely well and delivered a hot lead to one of our salespeople.

It could be any of those things, or it could be none. Those sorts of things happen on bad days too, but today these little achievements feel extra good. Especially the work ones. I’m still in that stage where half the time I don’t feel like I know what I’m doing at all!

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Analysing good days takes some of the fun out of it, so I’ll try not to do that so much. What I do have to avoid is convincing myself that this is the beginning of everything being super shiny happy. That’s a trap I’ve fallen into so many times, and trust me, it doesn’t get easier.

Relapsing when you honestly and truly believe you’re getting better? It’s heartbreaking.

No one want to be sick like this. Some degree of positivity and hope is crucial to coming out of it, but it’s not the sole factor and telling yourself at the first sign of fog lifting that this time you’re going to charge your way back to full function and take on the world? It shatters in the face of reality. Expecting yourself to come back like that is unrealistic, even for the strongest of us.

This is the reality of depression:

  • It is a recurring condition. You will feel better, and you will get worse, and you will feel better again.
  • You will be stronger after every relapse, even if you don’t feel it.
  • Good days aren’t always a sign of recovery, but they should definitely be enjoyed!
  • No one recovers instantly. Unfortunately, that includes you. No one is a special depression snowflake. Recovery is an ongoing process of managing yourself, your thought processes, and your environment.
  • Recovery doesn’t mean you’ll never be depressed again. It means you’re competent enough at managing it that it no longer interferes with your life the way it used to.
  • Hiding it, faking happiness, forcing positivity, all of those ‘fake it until you make it’ strategies might make it look like you’re okay, but nothing is better for recovery than being honest and open when you’re struggling. Tell someone. You’re not a burden, you’re human.

Most importantly, if you’re trying to ‘pass’ as okay, do it for you and not for others. Don’t mislead yourself with the idea that you should hide what you feel to make other people comfortable. It’s not healthy. If they’re not okay with the conversation, they’ll say so.

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If you feel you need help, or just want to vent to someone: do it.

If you honestly feel better when you’re faking it, or if you want to pass for a reason that is important to you, do that. Basing who you are and what you do around others is a nice thought, but if it becomes the sole motivator in how you present yourself, it’s not healthy. Be yourself, unashamed. And still, talk to someone you trust.

Heck, even if you’re not depressed: talk to someone about how shitty you felt when you stubbed your toe.

But, back on some more fun topics, here’s some of the things that happen when I’m having a Good Day (capitalised because of the obvious importance).

  • I dance. And I do this in good moments on bad days. It’s not real dancing, more of a… half-skip walk with legs kicking out. Because body movement is fun!
  • I swing on things. Like my office chair. Or I spin in circles.
  • I feel like me. Without the crushing self-doubt and heavy emptiness, I’m free to do those weird and wonderful things that I love myself for.
  • I jump down the stairs. Holding the hand rails, of course, because I don’t want to die. I also jump up the stairs this way.
  • I sing and bop to anything that’s on. Sometimes I sing to calm my breathing too, and sometimes I can’t help it because there’s music on and I have to–but it’s more obvious and louder when things are good.
  • I talk. You’ve probably noticed that I have a lot to say, and a good day usually means that I’m likely to talk endlessly about the things that others don’t care about so much.
  • I laugh. Randomly. At things you can’t see or hear, because I just thought them up. Will I explain what’s so funny? Maybe not.
  • My imagination explodes. Yes, it’s always exploding–and occasionally depression leads down dark what-ifs that are actually super fascinating–on Good Days this imagination can get downright bizarre. Like a Simpsons dream sequence.
  • I love everything and everyone. Which I do anyway, but I feel it much much more on a Good Day.

Basically, Good Days are days of freedom. Days where I can be the person I want to be because I have the energy to do it, and the confidence to not care what people think.

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It’s quite similar to me being drunk. Enough alcohol and I can enter a state where all the self-imposed inhibitions lift, where I can talk to people without worrying about conversation protocols and whether this is really the right audience to be talking philosophy with.

When I’m having a Good Day? Everyone is the right audience to be talking philosophy with.

On a Good Day, I’m me with 100% extra authentic me, and you can either like it or walk away. These Good Days are what my first psychiatrist diagnosed as ‘hypomania’, but I think it’s far simpler than that. I don’t feel invincible by any stretch of the imagination, I just recognise a chance to let myself out of the cage and I go for it.

Because, in order to avoid the trap of hoping that a Good Day is the beginning of Complete Recovery, I take every day for what it is: Unknown.

Yesterday was not a Good Day. Today is. Tomorrow? I’ll find out when I get there.

Right now, I’m making the most of the Good Day I’m having.

When even Milo doesn’t work.

When even Milo doesn’t work.

I’m exhausted. I’m always exhausted. How can I be this exhausted?

Sit down for ten quiet minutes and my eyes will start to close. Try to avoid it by standing up instead, and my knees begin to buckle with the weight of my body. Focus comes in fits and bursts, I’m writing things in increments. Doing small, bite-sized tasks that make the most of these energy bubbles before they burst.

You’d be forgiven for thinking poor routine is to blame. I do function better at night than I do in the morning, my natural inclination is to make the most of that time. That’s only an option if I don’t have to work the next day, if there’s a gap of less than eight hours between when I get into bed and the time I have to start work, I stress instead of sleep. Lately I’ve not been in bed later than 11pm, and I still feel like I’ve pulled an all-nighter.

Weekends I push it out a little more to feel more productive in the day. Otherwise it’s just an endless cycle of work, eat, sleep, repeat. I hate that hamster wheel feeling. There has to be more, there has to be something more than just surviving.

Surviving is all I seem to have the energy for, though. I come home from work so tired I’d go to bed at 6pm if that wasn’t weird. I have put myself to bed that early–and consequently forgot to eat that night. I forget to eat a lot of nights. I’m too tired to care about food.

I’m over-sensitive, too. Everything is a threat, an annoyance, another reason to be stressed. My shoulders are aching from being so tense all the time. I take things personally before my more rational side kicks in to correct me. It’s not about me, but it feels like it is and it hurts. I don’t understand what people mean, and it hurts.

A harmless joke leads to hours of me beating myself up because I took it seriously at first, and why couldn’t I see it was obviously not real? I should have known the voice on the phone was a work colleague–I’m so dumb. They must be laughing so hard at how dumb I am. I’m too tired for these jokes.

I feel dumb for all the times I couldn’t determine whether someone was serious or not. I feel dumb for all the times I didn’t understand what I was being asked. I feel dumb for all the things I simply don’t think to say or do, that it is a conscious effort to remember that people like someone to say ‘Thank you, that was delicious’ at the end of a meal. For all the things that are expected between people and I just don’t get them.

Some things, like ‘please’ and ‘thank you’.. even ‘happy birthday’ I struggle with. Even though I’ve been told that no one minds if it’s ‘not genuine’ (which makes no sense to me, why would anyone enjoy inauthentic gratitutde?), the terms feel so repetitive and cliche that I don’t know how to say them and still express the genuine gratitude behind them. I try to work around the words, to use expression, inflection and alternate phrasing to demonstrate that I value them enough to put thought into how I thank them.

But if I don’t say the ‘magic words’, all that thought is for nothing. People would rather hear a hollow and too-repeated ‘Thanks’ than ‘That looks amazing! You’re the best!’ Why is that? Why are people so hung up on the idea that only a few words can truly represent gratitude? I’m doing my best to remember to say the right words at the right times, but I don’t always and when I get pulled up for it I feel so stupid.

Come on, these are things I should know. I was raised better than this. It’s not that I don’t feel it, but I get caught either in trying to compose words that adequately express gratitude (which I hate to admit, can leave me unable to speak sometimes), or it just doesn’t occur to me that I should say anything. Again: how could I not know? Maybe I get caught up in what’s happening and my attention has shifted too fast, or I don’t know–either way, I have to consciously stop and ask myself: ‘Did you say please? Did you say thank you?’

The more tired I am, the more I slip. I’m slipping a lot lately. Really silly mistakes, confusing information, reading things wrong. Earlier today a colleague walked in and said ‘Good morning!’ and what did I say? I said ‘Good night!’

I’m trying to focus. My eyes keep wandering across my desk, squinting with the light, and even though there’s only a few of us here today everyone is noisy. The air vents are noisy. Scraps of conversations that I’m not part of, both upstairs and down, are distracting. I’m going to spend lunch in a dark room, which is what I do now. That period of quiet rest stops me from breaking the phone when it rings in the second half of the day.

I really hate talking on phones. My phone stays on silent because if it rings I might actually throw it. Phone conversations are for when you need to know something right now, otherwise a text will do.

I don’t really know what to do right now. How can I be so burned out when all I’m trying to do is function like a proper adult?

Sigh.

I’m doing my best to keep going. I seem to have less and less to work with every day. The more I force it, the more broken I feel.

Come on, you stupid girl. No one said it was going to be easy. If you’re not succeeding, you’re not trying hard enough. Everyone else gets by. Why the fuck can’t you?

I don’t know. I really don’t know. I’m trying. I can’t keep up. I don’t know how people work through the week, do things after work and also on the weekends. I don’t know how anyone manages what they do without collapsing into a pile of shaking sobs on a regular basis. I don’t know how people remember to eat or do other regular tasks without someone (or an alarm) to remind them.

I’m trying so hard to be normal, to do normal things, to work and socialise the way I’m expected to. I’m trying to remember the rules and say the right things, to not break down, to keep my crazy out of everyone’s way.

I’m trying, and I’m failing.