Tag: questions

Update: From Effexor XR to Zoloft

Update: From Effexor XR to Zoloft

For those of you playing along at home, it’s been a little over two weeks since I began the switch from 225mg/daily Effexor XR to 50mg/daily Zoloft. While it’s too early to claim a victory, the early results since beginning Zoloft have been very promising.

I will reiterate here that this post is not here to discredit or discourage the use of Effexor XR. Nor is it here to promote Zoloft as ‘better’ or ‘more effective’. How you respond to medication will rely entirely on your body’s ability to produce and use chemicals that affect brain function.

I came to Zoloft after a year and a half on Lovan (which worked for around eighteen months, and stopped) and three years on Effexor XR (which had very little or no noticeable effect on my depression). My research told me that others who responded in the same way to Lovan and Effexor XR had good results with Zoloft–which is hardly good medical science but it’s a better start than picking the next one off a list and seeing how that works. Finding the right medication at the right dose is trial and error at best.

Stepping off Effexor XR (especially from that dose) was one of the most uncomfortable, unpleasant, and downright frustrating experiences I’ve had. I knew it wasn’t going to be good, I’d been avoiding making a switch for that exact reason. At the time where I had tapered down to zero, I could barely function without wanting to scream, cry, or  vomit. I watched a lot of Netflix and crawled from lounge to bathroom to avoid the dizziness of being vertical.

And I had meltdowns, but if we’re  being perfectly honest–the withdrawal meltdowns were no different to the meltdowns I was having on a full dose. This was just further proof to me that the Effexor XR had not been assisting me in the way it should have.

I went straight onto Zoloft at 50mg. I was expecting more negative mental side effects, I was expecting more mood swings and unpredictability–but that never happened. The pharmacist warned that it could cause dizziness (he was very right about that!) and along with some nasty headaches from my body screaming for Effexor XR, I was in a pretty rough physical state for a week. The dizziness still comes and goes, I’m still adjusting (it’s very early days yet) but I feel I am presently more stable than I have been in perhaps the last three years.

Take, for example, my day trip to the city on Saturday. I went down to sit a test, and because the train services from town are ridiculous on weekends, I would have to arrive at 9.30am and leave at 6.30pm. The test was at 12.30 and only went for an hour. It’s a lot of time to fill when you’ve got very little money to spend.

I went anyway, and I went at the last minute. I’d originally decided I wouldn’t, and would try to secure some work. I was unsuccessful with that. I was tempted still to cancel the appointment and mope at home, conserve money. Or I could go to the city on strict rules to not overspend and attend the test anyway. So I did that.

I told myself I could go to a couple of cheap shops for homewares that I needed (jugs for the fridge, so I can make myself iced tea) that I suspected I would be able to get at a better price than shops here. So I spent the morning at Daiso, and purchased two solid watertight jugs at $2.80 each. Considering the ones here at home were $9+, I was pretty happy with that. I was only allowed to purchase a food item if it was for immediate consumption, substantial, and less than $3. I ate a lot of good sushi rolls.

On the train, the most bizarre (for me) thing happened. When I boarded, I selected a seat across from a girl who had curled up over three seats and was trying to sleep. I planned on doing the exact same thing. A few moments after I sat down, she asked if I could wake her when other people wanted the seats.

This is normally where I would do a small nod, and hope to goodness for no more talking. Instead, I laughed and told her I intended to sleep as well but if I was awake I would have her back. She laughed and we both dozed off on the train. Halfway to the city, where the train fills up very fast, it was her who woke me up so an elderly couple could take the seats beside me. By the time we got to the city, she was asleep. Again, normally I would scoot out of there as fast as I can and avoid further interaction.

Instead, I tapped her on the knee and woke her up so she could exit the train before the conductors had to do it. She woke, and told me about how she was going to adopt a cat while in the city, and we chatted until the train was stopped.

I’ve been feeling extra social and relaxed like that. When I go into town, I don’t hope the people I know don’t see me, I actively walk up to them and start a conversation.

In fact, I’ve been relaxed about a lot of things. Simple things, like not waiting until every visible car is out of sight before I cross the road, and just walking to the shops when it’s starting to get dark rather than obsessing over whether I should or shouldn’t.

I’ve been more energetic, too. Outside of the physical exhaustion, I’m finding the drive to do things I would normally leave for another time. I’ve been cooking. I love cooking when I don’t have to do dishes, so I’m making the most of the dishwasher I have here. Cooking up some chicken tenders no longer feels like too many steps to get food. I just… do it.

I don’t need quite as much time to prepare for a task, either. That may not make sense most, but when I look at a rack of clothing that needs to be put away, I very rarely have the ability to just do it then. If I try, I feel extremely unsettled about it. The other day I went into the laundry and saw the towels on the rack were dry.

So I put what I was doing on hold (this is also crazy hard most of the time) and got the towels down, folded them and put them all away.

That is an unbelievable level of domestic function for me. This generally only occurs in those intense bursts where I DO ALL THE THINGS at once. Those are useful, but entirely unreliable. I’ve been operating at this level for about a whole week now. A whole week straight.

The best part is that I’ve noticed an increased ability to drop a train of thought if I don’t like it. Where a negative thought would once spawn two more negative thoughts, and I would spiral down to a horrible place–I have literally been able to tell myself ‘Yeah, how about we drop that?’ and move on to the next thought. Without having to forcibly distract myself.

That is unheard of for me. Today I got rejected for a job that I do desperately want–something that two weeks ago would have left me in an inconsolable ball of misery and low self-worth. It still stings and I still feel pretty shitty over it, but it is not the sole thought in my mind. It’s just one of many and I’m able to focus on the better ones. I’m hurt, but not imploding.

I’m beginning to feel a freedom from the detrimental obsessive thinking patterns, and it’s wonderful.

There have been less shiny side-effects, yes. My actions aren’t as heavily regulated as they were–which is good, but I’m more likely to do things without preparation so I don’t get as much of a chance to analyse whether it is a good idea or a bad idea.

Like deciding on Saturday afternoon that I might as well just head out to my football team’s fan day, because it was on. That whim was rewarded with free icecream, a drink bottle, pancakes, and the chance to hold the AFL Premiership Cup! Best day! But not something I would have previously decided to attend just because.

So far it’s all worked out good, but I’m aware that I need to be careful I don’t go to the extreme of blind impulsiveness.

I’m also eating a lot. Food tastes better, I think. I want more and more tastes. I want to cook because cooking is fun, and then I get to eat. I’m slowly switching over from soft drink to iced tea, because it’s cheaper and probably marginally healthier. I’m not picking at things obsessively, the benefits (so far) are worth the journey.

It won’t be this shiny and wonderful forever. I’m looking forward to that too, where basic functions aren’t something to marvel over. I’m looking forward to a new normal built around mundane stability.

I really feel that right now, I’m on the right track to get there. And that’s a pretty good feeling.

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Definitions of success and self.

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.

WTB: Telepathic communication device for making friends without alienating people.

WTB: Telepathic communication device for making friends without alienating people.

I don’t understand people. I really don’t. I don’t know how it is that so many people seem gifted with this ability to speak without words. Is it telepathy? Are you somehow beaming meaning at each other via mysterious brain-lasers?

Whatever you’re doing, I don’t seem to be able to do it. I say things the wrong way, or at the wrong time, I give the wrong response, or more often than not–I don’t speak at all, when there’s something I should have said or done.

Some of my early school memories are literally of standing behind trees, trying to divulge the secrets of making friends. Twenty years later and I’m still as clueless as that little girl with her cheek pressed against the bark.

School at least offered a place where you could become known–and eventually friends–with those you saw regularly. Adult life makes this so much harder, even those who know the secret to interpersonal communication struggle to break out of their ‘friendship silos’. I have very few friends of my own in this town, and I have no idea how to go about connecting to more.

This realisation occurs to me every so often, when I exhaust the one (sometimes two) options for a venture to the movies or new restaurant. This time it hit me while I sent out invitations to my 30th. Almost everyone on the list who lives in the local area was a family friend, or friend of a friend that I don’t actually know well enough to feel comfortable making plans with that don’t involve the mutual friend. The rest were family.

My own friends, and I do have some wonderful friends in my life, are scattered everywhere but here. I love each and every one of them without reserve. I feel guilty for wanting more than I have, but there are days where I wish that I could text someone in the morning, and meet with them for lunch. It feels a little pathetic that my social interactions rarely go beyond my family. My family is fantastic, but they have their lives and friends outside of me, and I have… an overly comfortable blue couch.

Work is where adults are supposed to make friends, or at least this is what the internet says. Yes–I have actually Googled ‘how to make friends as an adult’.

As far as I know, I’m not unpleasant to work with–nor am I hard to get along with in general, and in most cases I’m happy to do whatever pleases the people around me. I have conversations with those I work with, suggest things to do, laugh and joke–and I think I’m doing well.

Yet, when it comes to making the jump from ‘work friend’ to ‘actual friend’, something goes wrong. I don’t know what. While others connect and relax together, I hear of it in stories after the fact. I’m not arrogant enough to think I should have been invited–but I do wonder what I’ve done that excluded me from participation.

Have I done something? Is there some secret code I’m not using, something that makes it clear to others that I want to be involved?

Or worse, am I just forgettable? Blended so far back into the scenery that you’d no more invite me to something than you might a kitchen chair.

When I do, and very nervously, invite people to spend time with me (in the hope of establishing an on-going friendship), the invitations are inevitably declined. Other priorities trump whatever I suggest, or perhaps they are just not interested in being further involved in my life. I don’t know.

I do understand, at this age most people have their ‘friendship silos’ firmly in place. It’s hard breaking in to a group, but I watch the people come and go and interact and wonder why I can never seem to get ‘inside’.

I’ve been told it can be hard to get to know me. Am I giving signals of disinterest? I don’t mean to.

The other suggestion for connecting with new people is interest groups, and that is one where I’ve had previous success. I’m looking at you, Melbnano and Brisnano. Groups for everything exist in the city, so finding the most wonderful bunch of 20-something and up assorted nerds willing to talk about ninja zombie erotica was as easy as looking up the local NaNoWriMo group.

Where I am now, the local writing group is lovely, but more interested in literature and memoirs than secret agent school girls discovering their teachers are actually drug lords. Most of my interests, like writing, aren’t group activities either–which increases the level of difficulty.

What do I do, then? I would love to create a social life for myself, take some of that burden off my family and really find myself a place in this community. To feel properly involved, and not a tag-along afterthought.

How do I get to there? What am I doing wrong? How do I become someone people think of when organising things to do?

Alternatively, if you could sell me one of those brain-laser telepathy kits, I’d be much obliged.

Reconciling evolution and intelligent design.

Reconciling evolution and intelligent design.

Fair warning, this post is about religion. I’m not a religious person–but I’m fascinated by the structure and influence it has. I admire those who have the strength of faith to believe in what cannot be proven, and those who take these ancient teachings and utilise them to be generous and kind. I hope that my thoughts below carry my respect for others’ belief. However, if you find religious discussion confronting or uncomfortable, you may wish to skip reading this blog.

If you are religious and find your way through my thoughts–I would love to know your view.

Why is a twit like me thinking about religion so much?

I was raised to believe in what I chose to believe in, so for the most part that was the hidden magic of the universe that you see in books and movies. I hoped every day desperately that I would catch my toys interacting in the dead of night, a tiny world that nested within my own. I attended a church with my grandparents and siblings on the weekend, their way of giving my parents some much-needed peace, but the miracles of the Bible just never grabbed me in the way it does others.

I liked the stories, and I loved the massive lunch they held once a month. I got enough familiarity with the routine and structure of church that I eventually decided it wasn’t for me, and I would have to find another activity with free food.

Simply put, I couldn’t suspend my belief enough to accept the Bible as a historical source. I still can’t, and I think it’s downright amazing for those who can.

I do think about it a lot, though, especially with the influence that religion has on society. Trying to reconcile happenings in the world with oft-quoted Bible verses keeps me occupied.

Genesis vs The Big Bang

One thing I never really ‘got’ about Genesis was the concept of the world being created in seven days. This makes very little sense if you consider that prior to there being light, there was likely no way to measure day and night. But then, who are we to assume that a God’s concept of day and night is the same length as our own?

The magic-wand approach of ‘intelligent design’ just doesn’t seem right. Why magic a universe from the depths of nowhere, when you could grow one? Why go for instant gratification when you could pull cosmic forces from hither and thither, smashing them all into one ‘big bang’ and forming the beginnings of a baby universe?

I don’t see how the Bible and scientific theories of universe creation are incompatible.

Remember too, that when these tales were initially formed, society didn’t have the deep scientific understanding that we do now. You could assume we were told a story we would understand, one of magic and wonder. Much like a child’s fairy tale before the child is old enough to comprehend that these things (allegedly) don’t exist.

God as a scientist.

So if we assume then that God is the instigator of the ‘big bang’ and our universe is His pet project, we then begin to see God not as an almighty magician, but as something better. A scientist!

This does mean putting aside the idea that God’s way always is and always was perfect. Perhaps in days of Eden it might have been, but whether you believe that sin and corruption changed the course of the world–or that God allowed nature to grow as it would–you can’t deny that the world has been evolving and adapting.

A close friend advised me that God gave man free will, that man could choose to love Him independently. The concept of the unknown element, ‘free will’ ties in nicely with the idea of us as an ongoing project. Another teaching claims that after the original sin, man was given the freedom to seek his own salvation in goodness and worship. In other words–God let us loose upon the earth to see what we would do.

Choose him? Better ourselves? Tear the world apart? In giving that free will, God himself was unable to know the outcome of the universe. Sounds like a pretty awesome project to me!

Evolution vs Intelligent design

With me so far? This one can be tricky. Once again, we’re going to assume that Genesis is a story told to man based upon how they understood themselves at the time. That is, a race that could stand, walk, and communicate.

Evolution suggests we weren’t always like that. Evolution suggests that we evolved, like all other organisms, from the smallest building blocks in the universe. The Bible states that we were made in God’s image. The fight over what view is correct has been raging since the theory of evolution first arose.

They’re not incompatible. We assume that the Bible means our current shape and form, because that is what we know. We don’t know what God’s image is. God, as is commonly accepted, is an all-knowing presence with no corporeal form. There’s no evidence that contradicts the idea that God Himself is able to change forms, and plenty of evidence that humans have evolved over time.

We were created in his image, and molded further to suit the changing planet, perhaps?

The universe as an ongoing project.

I’ve said a bit about this already, but the idea of our universe being seven day’s work and then sitting back to see what happens? Doesn’t sound much fun for God. I think evolution tells us that if He is the driving force behind all creation, he is still creating.

The world is changing and reacting in ways that He may not have predicted. Adjustments are needed, punishments are delivered and rewards are given. Over centuries organisms grow or lose tails, shed or grow fur to suit new climates, breed and diversify into the complex kingdom we live in.

What if we’re not just discovering new species of animals, but he is creating them for us to find?

Could you imagine the pure joy that God must feel as we explore and discover these creations? Pride when we broke our world down into building blocks, atoms and cells. Excitement at our discoveries, like a parent for a child. This is why I especially can’t get behind the Religion vs Science idea. God is science, and science is God’s magic.

On developments since the time of writing.

I can accept that the Bible may (in places) suggest that homosexual relationships are not acceptable. But remember, in this time and age, there was a great need for people to populate the earth. If men lay with men, and women with women, the progress of man would have been hobbled. We were not in the fortunate position we are now, where so many brilliant minds carry society forward.

We no longer need the reproductive power we did in Biblical times. ‘Go forth and multiply’ is no longer feasible when the world is bowing under the strain of overpopulation.

There’s a study done with rats by John Calhoun (1962) that I think illustrates this nicely. A number of rats put in an enclosure of a certain size will grow the population to a point–and then it plateaus. Put those same rats in a larger enclosure and the population will grow again, until the optimum population is reached and once again the numbers plateau. For any size ‘world’, there is an ideal number of inhabitants.

The rats controlled their own population by becoming bisexual, homosexual or asexual. As the rats were unable to flee the situation, the end result in most cases was a pretty scary dystopia–and there are plenty of counters to Calhoun’s research that suggest human society is less likely to follow that exact path.

However. If God works in mysterious was, and we must assume He does, how is homosexuality not a perfect solution to overpopulation? He’s not taken away the ability to love, but broadened the acceptance of other options and the idea that not all relationships must create children. We no longer need to multiply, but we do need to love and care for each other. There are children without families and families that cannot have children–it may be a literal match made in Heaven.

There are many verses in the Bible that speak to social contexts that no longer apply. Clinging to the words on the page may be inhibiting society’s ability to move forward with His grander plan.

The vast difference between Old and New Testaments illustrate how God adapts from guiding man with lessons built on fear, to the gentler acceptance and sacrifice of Jesus Christ. Society changed, and God’s method of guidance did as well. Not everything that was acceptable before is acceptable now–not everything that was unacceptable then is still unacceptable now.

Basically? The truth is bigger than the Bible.

If I had the faith, that is what I would believe. The Bible was a guide book for centuries ago, one that can inform us of where we came from–but has limited use in our current social context. In accepting that the world is changing around us, and that this is by God’s doing, it also needs to be recognised that Gods plan is also changing.

Therefore, a thick volume of preserved words can only tell us so much. For the rest we need to take the spirit of God’s message (be kind, be generous, and love one another) and ask ourselves how it applies to the world as it is today. And from then, trust that if we act with that message and with God in our hearts, that we are acting in accordance with his plan.

I may not have God in my heart, but I do wholly believe in the message–insofar as it teaches love and acceptance. I see churches turning closer to this, and it makes me happy. Religion is a very powerful tool in society, and it should be used to bring people together–not tear them apart.

Especially not over ancient, difficult-to-translate text.

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.

The ‘me’ I see.

The ‘me’ I see.

So many of my posts here have been negative, or at the least, not very positive. I don’t like that. The reasons behind my frustration are often complex and require writing out to explain them to myself and then to the world. I don’t feel as much of a need to explain the good moments, I just accept them as they come.

Still, I’m aware that the blog is unbalanced in that aspect. Today I want to talk about something that does lean toward the positive. I want to put together a picture of who I am and who I want to be.

Like most kids who experience bullying, or those who get themselves tangled in controlling friendships, I sacrificed parts of myself to please those around me and secure my position in the group. I smothered my feelings, I taught myself to hide all of my hurts, and I learned that standing out and being different was wrong. I learned not to talk to people about what I was feeling, that my needs were less important than another person’s time. I learned that my problems were mine to deal with, asking for anyone’s help would allow them to see myself as I truly am–and once that ‘secret’ was out, I would be outcast.

There weren’t any exceptions to this rule. It didn’t matter how long, or how close, or how important someone was in my life. I wanted to be easy. I didn’t want to be trouble. I wanted to simply exist in the company of others for as long as I could fool them that I belonged there.

I think I was twelve the year I burned the side of my leg after a motorbike ride. The burn was about the size of my hand and stung like a bitch. I knew I’d been burned, but I said nothing. It was Christmas day. Everyone should be happy on Christmas day. If they saw me injured, they would be worried and distracted from their fun because of me. I went out the back with a cold wet face washer and tended to it myself.

Naturally my parents found out a few days later and it got seen to properly, but that explains the sort of thought processes that went into keeping that secret.

Those processes still exist. The desire to be easy and not upset those around me still governs the majority of my decisions. I do catch myself doing it, and when it comes to things I deem serious, I correct it. I force myself to ask for help. The real damage is in the suppression of the things I love, and want to be. My silence when I want to speak, my muted reactions when I want to burst with emotion. All because I don’t want to bother or trouble another person.

That’s where I’ve come from. It means that who I feel I am, and who I project myself to be are at odds with each other. I don’t feel that I am a quiet, stand-offish, secretive person. That’s not who I want to be, either.

This is who I feel I am, written in third person because it’s somehow easier.


 

She’s relaxed, talkative. She says dumb things and goes bright red  when she realises what she’s said. It doesn’t shame her. She laughs with a snort out of her nose first, and then a belly laugh that sputters through her lips out into a full sound. She doesn’t  care how inelegant it is. It’s a laugh, and laughs happen the way they do.

She can talk about almost anything, stopping her is harder than getting her to start. She talks fast. Sometimes she needs to be asked to slow down. She gets excited when telling stories or talking about things she loves, waving her hands emphatically. You can see when she loves a subject, it lifts her. She’s equally animated on subjects she hates, arguing rational points with the confidence of a lawyer. She might be wrong, she’s not always right, but she’s always passionate. Especially when it comes to politics. She wants to see a better world, a fair world.

She’s an idealist and an optimist. Even though the skeptical side of her knows that a perfect world will never happen, she argues that there’s no reason not to aim for it. That’s the function of idealists: to dream bigger and better, to inspire continuous change rather than settling for good enough. She believes in continuous improvement and life-long learning. She believes in understanding her self and optimising her strengths, developing her weaknesses. Her optimism is balanced by a grounded sense of logic, she hopes for the best and understands the consequences of the worst. She believes that St Kilda and Richmond will win premierships. When they do, she’ll cry with happiness because she knows how much it means to people who mean the world to her.

She wants those around her to be happy. She wants to make them happy, to help. She can’t walk past something that she knows another person will love, she has to buy it and surprise them. It’s worth the smile. That makes her happy. She loves surprising people. Her methods of helping are often physical things, gifts or tasks done. Words never seem as useful as something concrete. This is her proof that she cares. That she knows what you want and need and love, and that she goes nowhere in her life without those she loves in her mind and heart.

She’s affectionate, and wants to show it. She’s a ‘huggy’ person. Everything she feels, she feels it intensely. There’s no middle ground between elation and sorrow. There don’t need to be reasons to explain why. Her mood changes with the world around her, the things she delights in or takes sadness from. It’s a never-ending rush that can be exhausting.

She overthinks. She needs to know why and what and how. She struggles to accept that some things just have to be a certain way. Knowing how things work is how she remembers. She had this argument about trigonometry. Until she knew why the formula worked, it was impossible to remember.

She’s confused by people. They don’t make sense. They aren’t direct in what they want, they communicate on a wavelength she can’t tune into. In spite of every attempt to mimic and follow along, they still know she’s not like them. She has rules to follow when talking to others, pre-considered answers to give when the situation requires it. She wants to break free of them and just be herself–but reliance on the rules got her this far, and she’s afraid. Without the rules she will be weird and most likely Wrong.

She’s plagued by anxiety. Not for spiders or heights, but in her interactions with other people. It’s not, as people assume, irrational. There’s so much to remember. So much body language to analyse. So much to keep up with, it seems impossible. After every conversation she reflects, tries to spot what she did right and what she did wrong. This is how she built her rules. Anxiety tells her to be careful in her communications, the cost of screwing it up is too high. Mess it up and she won’t be accepted.

She knows this. She’s lived it.

She wishes she could ‘just relax’. Sometimes she is told to be herself, others she is told she needs to push through and be like everyone else. Which one is she supposed to do? The former is hard for people to accept, the latter is exhausting. It burns her out. Pretending is supposed to increase her ability to do things the ‘right’ way, pushing on should be the key to tolerating and surviving the world. It just feels like a heavy mask. It feels like a lie. She’ll never truly relax until she can be herself and be accepted.

She wants freedom and justice, equality for all. She wants to see refugees settled in peaceful neighbourhoods, communities working together, understanding and acceptance for LGBTQI+ people (and anyone else who’s different). She wants everyone to be happy. She hates the ineffectiveness of politics, the drama-mill that is journalism, she’s disgusted by how words are twisted and turned to portray people in a bad light before all the facts are known. She believes wholly in knowing all sides of a story before judgement.

She believes in people, in their goodness, and will always try to find an explanation that keeps that intact. She doesn’t hate. She gets manipulated from time to time for giving people more chances than they deserve, but she refuses to change that. She’s happier in herself knowing that she gave someone every opportunity to correct their behaviour before giving up.

She’s bloody minded. She gets fixed on problems and how to solve them. Sometimes she gets so caught on the angle of one solution she doesn’t see other, more obvious, solutions. She will throw herself at a problem until it cracks or breaks her. She’s notorious for sending emails with her thoughts and theories on how to improve things. She’s rarely defeated for long, and always comes back to a task more determined than before.

She’s picky about things. How the groceries are stacked on the conveyor belt, how dishes are stacked in the dishwasher. She hates pegs left on the clothesline when the washing is taken in. Errors in advertising and other mass communication irritate her. Stores should have logical layouts that make sense, with checkouts by the door–none of this ‘Kmart registers in the middle of the shop’ nonsense. She can tell when an image is a pixel out of alignment, or a shade wrong in colour. She hates the font Scriptina more than she hates Comic Sans (both are overused).

She’s scattered and disorganised in her own organised way. Her long-term memory is good, but she forgets where she put her drink… constantly. Spaces that are too organised and too clear make her anxious, she likes to spread out and see things. Her desk is a pile of papers. She knows what all of them are, and how to get them when they’re needed. She has her processes for doing things and stumbles when they’re interrupted or changed. She does not like change.

She constructs her plan for the day every morning, and gets frustrated when it doesn’t work out. She hates uncertainty in planning, likes to know what is happening and when it will happen. Additions or changes to a plan at the last minute will frazzle her, and when plans fall through she is left with a void that feels too big to fill. When things happen regularly, she expects that to continue. She notices patterns around her and uses those to project what might happen in the future.

She’s extremely passionate about her hobbies, though she keeps them mostly confined to the communities they belong in. The online world introduced her to so many wonderful people through games and blogs and forums, people without whom she wouldn’t be who she is now. Her life is full of rich friendships that reach across the country and the world. None of them are less for not being present in her physical life. She is grateful for their existence. Online she can pretend less and be weird more, and these people embraced her for it. She learned how to find her ‘tribe’ and begin the process of accepting herself. It continues here.

She’s brilliant at pouring her heart and soul into a task, less good at splitting it between multiple tasks at the same time. She’s a perfectionist who worries about things not being done well enough, sometimes that makes things hard to start. She can get lost in tasks, as well, so absorbed that any other outside needs are forgotten. Her ability to produce in this mode is phenomenal. She just has to remember to stop and eat.

She wants to be more. Not just more successful, but more true to how she sees herself. She wants to wave her arms with excitement, chatter on endlessly about her favourite things, bounce on her toes while she speaks even if it annoys those she’s talking to. She wants to sprawl comfortably beside friends and binge-watch TV, to not hear herself calculating every move and word she makes, she wants to leverage the intensity of herself and use it. She wants to squeal and dance and even get visibly pissed off when she feels it.

She’ll get there. It’s a long and slow process, breaking bad habits takes time. And when it’s done, she’ll be an unashamedly loud and animated, intensely-emotional, scatter-brained creative with a wicked sense of humour and a superhuman ability to focus on single tasks.

Bring it on.

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.