Love Hard, Hate Harder

Life is a game; a social hierarchy that has absolutely no rhythm or rhyme. There’s a ‘formula’ to happiness, apparently, from what I can gather. This never worked for me. This formula, if completed correctly, gives the illusion of happiness. The question nobody seems to ask themselves is: is it happiness, or is it societal success? A well-paying job, a house, a car, a marriage, kids. A checklist of goals that equal happiness, right? That’s all well and good if you’re living and breathing your dream job, that house is your safe space, you have the time to allow that car to give you the freedom you bought it for, a marriage alongside someone you don’t secretly but obviously resent, and kids that you actually deserve to raise. I’m well aware I’m a bit bitter when it comes to analysing the expectations that generations of one-dimensional success-seekers lay upon us. It’s very easy to resent contributing to a society that you don’t believe in, or understand. What are we achieving? This was never our purpose. I know right, what purpose? I don’t have to say it, you’re already thinking it.

When I was forcing myself through a life that I never had the capacity to manage, it ruined me. Along with the long list of positive traits I received from being born autistic, there also came an everlasting fog of confusion. People are enormous question marks. Why are you getting angry about something I’m not doing, and then when I do do it, I’m still wrong. Why the upset because you read between lines that I never created? A lot of things I do and say are taken the wrong way, and therefore the majority of people assume that I’m not a good person, or I’m playing with them? No. I say what I mean and mean what I say. But apparently the fact that I’m not playing THE game….means I’m playing a game? Yeah, bit of a mindfuck. It’s safe to say I don’t know what it feels like to not be mentally exhausted all the time.

This isn’t a sob story. If you thought that, you were also reading between the lines that you put in place there, not me. I never said that’s what it was…therefore it is not. Fact is fact. I don’t like sympathy, like sure relate to my experience and we can maybe bond over that, but I’m not asking anyone to feel sorry for me. I’m not a tragedy. I’m a story, read or don’t, that’s all.

I’ve always wondered as I was growing up why people don’t seem to look up very much. Like literally look up; eyes up to the sky kind of looking up. I always found it brings you back down to earth, if we look past the ugly grey buildings that society decided we needed to build claustrophobically around us to encourage the money game that is ‘life’. And in amongst those buildings includes a severe lack of windows in many of them, so if you ‘contribute to society’ from inside one of those buildings, are you even a real part of this world? Or a nonexistent character in a fictional book with a shit start, middle and end?

Don’t get me wrong, some people like that life because that’s what life is to them, or at least it funds the life they actually want (is probably a more fair statement to make). And that’s great, if that makes you happy. The point I’m emphasising is that a lot of the time it doesn’t, and that’s where the problem lies. I would never even attempt to count the number of people I know that drown themselves in unhealthy addictions because they accidentally walked into a lifestyle that they were told was fitting for them. When in reality they never had a chance at happiness because they were never allowed the time to figure out what they actually wanted out of life.

My theory, which is pretty basic but no one likes to buy into it, is that relationships are at the core of everything. That goes for all kinds of relationships. The biggest mistake we can make is sacrificing this core piece of what actually matters to us as humans so we can perform this act of ‘contributing to society’ in the most meaningless way possible. What you need to ask yourself is: are you connecting with those around you, or are you people-pleasing? Because if it’s the latter you’re on the road to the shit end of that book I mentioned earlier. Allow yourself a best friend, fall in love so hard that you’re blinded by that blissful HAPPINESS that so many of us pretend to gag in response to. We are humans, not obedient robots. Love hard, hate harder. (Because some people are dickheads). Let yourself feel however you need to feel, and stop acting whatever way you ‘need’ to act.

We always hear that stupid saying, it’s always some version of ‘the key to happiness is saying yes’……..sorry, what? SAY NO. Say no to anything that goes against what you believe in as being human. Indulge yourself in what makes your heart truly happy, we shouldn’t have to spare it out and keep our happiness at arms length incase we….what? Become too happy?

That’s it. That’s the blog.

Autism and Fatigue

I’m starting this blog entry with weary fingers, tired eyes, and an exhausted mind.  My eyes are half closed with the screen of my laptop turning into a blur.  You might be wondering, what in the name of all that is possibly above us, why is she writing a blog in that state?  I like to make a point out of writing when I’m in whatever place the headline of the blog suggests.  How would it be real otherwise?

From as early as I can remember I was always a tired soul.  I’d come home from school, I’d take a nap.  I’d come home from seeing friends, I’d take a nap, and so on.  Naturally enough, many people thought I must be very lazy.  Either that or they would find it funny, as if I was acting like a small child or an elderly person.  And to this day, before anyone would know I’m autistic, if it’s mentioned that I need a rest in the middle of the day, I get this half scoff/half snort in response, as if I must be joking.  The forgiving side of me will politely explain to them the reasons for me needing this rest, or on another day the more worn out version of me will just give them a blank stare in response.  (Sometimes you gotta make them uncomfortable).

Why am I always so exhausted?  One word: People.  I mentioned in a previous blog how I rarely understand why people do or say the things they do.  I spend all of my time with my brain in overdrive trying to work out why I’ve been made feel like I’ve done wrong in a social situation; and I can never quite work it out.  I feel like no matter what I do in a social situation, I can’t win.  My mind is doing so much overtime thinking about how and when and why and why not to do or say certain things that after only waking up, let’s say an hour ago, I need to go back to sleep.

While I recognise sleep hygiene is important and sleeping during the day won’t help me sleep at night, a lot of the time I have no problem at sleeping at night; only during times of distress.  On any normal day I will nap 1-2 times during daylight hours and still sleep soundly that night, i.e. I need all of that sleep.  There have been times where, after a social situation, even one that any neurotypical person would see as non-taxing, I have been so drained as if with every word I spoke or even just listened to, all of the energy has been sapped from my body.

This aspect of my life can be quite consuming; I have to plan in advance when I might need a nap.  This doesn’t go to plan all of the time.  There have been times when I’ve been running errands in town and have had to run home as fast as I can to literally fall into bed.  It is unavoidable.  My friends have now adapted and allow me to sleep in their house during the middle of the day if we’re hanging out; it’s just part of who I am now.  If there is a family occasion, like Christmas or a birthday where we have more people up at the house than usual, it is 100% guaranteed that at some point, probably not too long after they have arrived, I will retreat upstairs and crawl under a blanket to roll up in a ball and sleep.

This used to scare people.  Relatives would ask, ‘Is she okay?’ or ‘Is she sick?’ My grandmother has referred to the time during the unknown, before the Autism diagnosis, that it was as if a dark cloud was going to fall down upon us carrying with it some drastic event, that it would be uncovered that I had some serious illness or something.  With this more accurate diagnosis came relief for her.  Now if she sees me go pale in the face or become overwhelmed she’ll encourage me to go take that nap, knowing I will return with more energy afterwards.

Working is also somewhat of an ordeal.  At the moment I can only agree to working part-time and during the mornings, knowing I will need to sleep during the afternoon.  Thankfully, the people helping me find work are very understanding of this.  In fact, this week coming I will have three mornings of work experience, which I am looking forward to, knowing it was been tailored to my needs.

I have accepted I will most likely always be in somewhat of a tired state, at least while I’m still learning to cope with social situations.  It would be easy to lock myself up in the house and never venture out, avoiding all social interaction, but I realise that would never help me.  How will I learn to cope if I never try?

Autism and Depression

First a quick disclaimer: Some of the following may be triggering for some.  If you’re in a bad place in terms of your mental state, this may not be the blog for you. However, on the other hand, it may also be helpful for someone in that place to know they aren’t the only one.  Just a small, calm warning that this blog contains some heavy content.

I want to write this while it’s still fresh; while that dreaded, black feeling still hangs.  I would never want to lift the weight off my shoulders and dump it onto someone else’s, and I worry that by writing this blog entry I’d be doing just that.  But know that I am being looked after by the mental health services, this entry is to simply share my experience and hopefully educate those who lack knowledge on the subject.

This past week has been one of the most difficult I have endured in my life so far.  A very dark cloud descended upon me, and boy, did that cloud rain.  I can confirm that that cloud has now lifted, and a faint rainbow crosses over the sky above me with the sun streaming through.

When it comes to Autism and the topic of Depression, the two are inextricably linked.  The same goes for Autism and anxiety, fatigue, the list goes on.  But today Depression is the only thing on my list of things to talk about, and how being autistic can leave you more susceptible to such dreadful conditions.  Why is this?  Well, let’s get into it.

For me, I find it almost impossible to connect with anyone, and when I find someone I click with I do my best to keep that person in my life.  Unfortunately, in the past month, I found myself totally isolated from anyone that I could truly connect with.  Don’t get me wrong, I have an adoring family and a few great friends, but whatever way things were happening for me, I lost my ability to look someone in the eye and feel their heart beat with mine, their soul dance to the same rhythm, whatever analogy you want to use.  And so, where did I turn to?  I turned to the Internet, of all places to turn to I chose the most vapid, soul destroying form of modern technology.  Instead of individually reaching out to someone close to me and telling them what was happening with me, I told the whole world instead; and what a major misjudgement on my part that was.

I had reached this crisis point, and was acting very erratically.  I just wanted everything to stop; how I was feeling, things that weren’t going the way I wanted them to in my life, the pressure to conform in a world that I didn’t understand.  After several days of feeling this way, I became very calm.  I’ve never felt so calm in all my life; this wasn’t like me as I’m nearly always in some state of anxiety.  I became this calm because my brain said to the rest of my body ‘Hey, over here, here’s a way out.’  It was like this quiet light bulb moment.  I see no need to give details of this moment, why would I put horrible thoughts in other people’s heads?  All I’ll say is, it was a dangerous light bulb that lit up in my head; one that would abruptly shatter and leave off a spray of thin shreds of glass, cutting everyone in sight.

To put it bluntly, I was sick and tired of everything that involved people.  I couldn’t understand why they would say the strange things they do, what they meant, or why they would do the obscure things they do.  I’m forever in a state of sheer puzzlement when it comes to the human species.  Dogs I get, cats I get, anything that has a layer of fur I get, hey even if it’s a Sphynx cat, I will get that cat.  Being autistic comes with a blessing of a deep connection to animals.  I literally ache for interaction with animals, my mind and soul screams out for it.  I am hoping that soon I will be able to move to accommodation that is suitable for animals as I firmly believe it will change my life for the better.

During my explosion onto the Internet trying to reach out and connect with someone, I found that apart from, of course, my dear best friends and a couple of others, no one else reached back.  My cry for help was answered by a deafening silence for the most part.  This made me realise something eye-opening.  My 1000+ followers aren’t necessarily my friends, they are merely onlookers.

Society facilitates this weird role play of pretending that everything is ‘okay’ and ‘normal’.  People get up, go to work, play house, go to bed, get up the next day and do it all over again.  It isn’t encouraged that during that daily routine we really feel what we are feeling, and never mind ever actually talk about it either.  So, when these onlookers see someone crying out for help, they don’t know what to do (either that or they just don’t care), because they aren’t equipped for it.  Where is the education in schools for such an event? What does one say or do? Who does one call?

Your suicidal friend most likely won’t call you.  Like me, they might scream at the top of their lungs online, they might bottle it up and say nothing, they might power on in life until they reach an absolute breaking point.  All you can do is be there as a friend, check in on them from time to time as a little goes a long way. And for the love of all that is sacred and mighty, if your friend says they’re not okay, believe them.

One point that I will end on, suicide is not a selfish act, as much as I understand why you might think that way.  Of course it devastates families, but remember, the person in that situation is also devastated.  You get tunnel vision; in the moment you believe you’re a burden, that eventually people will be glad of the loss somehow.  But as a continuing life survivor, I can guarantee you that if you’re in that dark place, it can and does get better.  Find someone you trust and open up.  And if you feel you can’t trust anyone close to you, there are a number of services you can reach out to, which I will leave below.

I believe we are all put on this planet for a reason, whatever that may be.  I don’t know what that reason is yet for me, and you might not know either, but let’s be excited to find out.

Whatever you do in life, as much as you believe it’s insignificant, it’s important that you do it. – Gandhi.

Samaritans:      116123 or 087 2609090

Pieta House:    1800 247 247

 

Autism In Females And Masking

Did you know that boys are four times more likely to be diagnosed with Autism than girls?  This translates to 1 in 37 boys being diagnosed with only 1 in 151 girls being diagnosed.  So this must mean that autism is more common in boys, right? Wrong.  One potentially important factor in this diagnosis imbalance is that statistically females tend to receive their autism diagnosis much later in life, which in itself is evidence that autism is harder to spot in females; but it doesn’t mean they don’t have it.  A second potentially important factor is that females deal with autism much differently than males.  Females tend to cope with their difficulties through masking.

What is masking?  Masking is a literal term meaning to ‘mask’ or ‘conceal’ something.  From a very young age, as young as toddlers, we females learn how to copy and mimic our neurotypical peers.  A simple way of putting it is we are very good actresses.  We pretend we are ‘normal’. (I won’t even bother getting into the concept of being ‘normal’).  If Cindy Lou down the street has gotten the new, more politically aware, Barbie doll, you can be damn sure we will ask our parents for the exact same one.  Now, this may seem pretty typical of any child, to copy their peers, but when it comes to autistic females, it goes much deeper than that.  Our whole existence revolves around fitting in with the norm.

During my recent research into my being autistic I looked back on some old home videos of me and my older brother at pre-school age.  The first thing that stood out to me was my constant attempts to run around after my brother and to copy every little thing he did.  If he laughed, I laughed.  If he decided to eat soup with a fork, I would join him.  To any onlooker, this was just a cute copying trait I had because I adored my brother, which was true, but it also came with a strained undertone.  In a separate home video, me and my brother are attending our friend’s 3rd birthday party.  While all the kids are playing and interacting with each other, I can be seen standing back just watching everyone; simply carrying out my routine investigation into what everyone else was doing, and what I should be doing. It was also around this age that I began looking at people in the spot between their eyes at the top of their nose (a very common autistic trait).  This instinctual action is a cover-up; you think I have no problem with eye contact when I’ve never once looked you in the eye.  For me this is only true with people I’m not totally used to.  If you’re a very close family member of mine or my other half, this isn’t a problem for me, only if I’m not entirely comfortable with you.  Completely lost, always grabbing at any opportunity to learn and imitate other people’s actions and attitudes.  This is what masking is.

Does masking affect one’s wellbeing? Yes.  For the better?  No.  There are many downsides to camouflaging autism.  Evading an autism diagnosis well into adulthood may do our social and professional life good, but it also causes serious harm.  The knowledge that we are hiding who we really are can exasperate our anxiety levels and cause the onset of depression.  Kajsa Igelström, an assistant professor of neuroscience at Linköping University in Sweden says “Camouflaging is often about a desperate and sometimes subconscious survival battle.”  This is TIRING.  Along with it affecting our mood it also affects our energy levels.  This is the precise reason I am unable to work fulltime.  By putting on a mask and attempting to keep up appearances, I lose all energy.  Truly exhausted after a number of days where I’ve been socialising, I need to have a few days of intense recovering, most of which entails me staying in bed…and then returning to bed again that same day.  Am I lazy?  No, I couldn’t be less lazy. I’m just exhausted.  If pushed beyond my limit, I subconsciously begin ‘stimming’.  Stimming in the autism community is known as repetitive actions or movements.  My version of this is wringing my hands and squeezing my eyes shut repeatedly.  As the years have gone on, I’ve learned to be quicker at noticing this and do my best to hide it from others.  If truly overwhelmed I will find a bathroom cubicle to hide in and stim to my heart’s content.  This is all part of the ‘masking’ package.

As autistic females, we are severely misunderstood.  Our every day battle after the diagnosis process is hearing “you don’t seem autistic”.  If this is something you have thought or said to someone with autism, I am glad you are reading this blog.  By becoming a more knowledgeable society we are one step closer to understanding autism.

 

My Autism Diagnosis Journey

About a year and a half ago I was misdiagnosed with Schizophrenia.  Boom, right?  Now, I don’t blame anyone for this misdiagnosis, because at the time I was displaying signs of psychosis; visual and auditory hallucinations.  However, quite a lot of the true condition of Autism Spectrum Disorder was seemingly completely invisible to any onlooker. Again, this was no one person’s fault.  You might be wondering, what’s different about me? Why was this condition missed? Well, I flew entirely under the radar simply because I am a woman.

You might be thinking: ‘Hang on, how can one jump from Schizophrenia to an Autism Spectrum Disorder?’  Well, let’s get into it.  I have suffered from chronic anxiety from a very young age and as time went on I began having severe panic attacks.  Any of my anxiety or panic attacks were always related to social aspects of my life; going to school, meeting new people or even old friends, answering the phone, being in the workplace, etc.  I would clam up and freeze, become dizzy, revert into myself and lose the ability to communicate with spoken language.  All of this added up over the years to a point of complete breakdown.  I began having visual hallucinations and frequently hearing voices, which was all very traumatic.  This extremely high level of anxiety most likely caused a change in dopamine levels in my brain which resulted in the psychosis-like symptoms.  Therefore, understandably, I was diagnosed with Schizophrenia at the age of 21.

I’ll be honest, and my family agree, this didn’t feel right.  It just didn’t seem to fit.  After numerous visits and assessments with psychiatrists and psychologists, it was becoming gradually more and more clear to everyone involved, that this diagnosis was incorrect.  The voices and visual hallucinations only occurred when I was severely anxious. Eventually, I was seen again by a clinical psychologist who started asking me questions that didn’t seem to relate to the Schizophrenia diagnosis.  He asked about my obvious sensitivity to light and noise, my frequently changing intense interests, how I found it difficult to interact with most people.  He tested my ability to pick up on sarcasm and read between the lines, a test which I failed miserably.  All the while I was completely unaware of why he was asking me these questions but I never queried it.  The psychologist then handed me some sheets of paper on which I had to answer numerous questions; do I prefer to do things the same way over and over again, do I enjoy my own company more than I enjoy others, do I get so absorbed in some things that I lose sight of everything else, do I experience sensory overload, am I always honest with my opinions, the list went on.  Little did I know he was screening me for Asperger’s Syndrome.

As someone who had limited knowledge on the subject at the time, when he mentioned the word ‘Asperger’s’ to me, it took me a minute to respond.  But I sat back in my seat, bowed my head slightly and repeated his words: ‘Asperger’s’.  I’ll admit, I had a huge ‘Oh’ moment.  It made total sense to me, this was what I had.  We were then thrown into the world of trying to find a psychologist who specialised in Autism as me and my family were keen to have me officially assessed and diagnosed.  We decided to go private.  Within about 5 weeks I saw a very nice man who gave me the diagnosis of Asperger’s Syndrome/ASD1.  How did I feel receiving this information officially? I felt blessed.  I had finally found who I really am and why I had found life just that bit more difficult than most others.  This was a new beginning for me.

One thing that stood out for me during the diagnosis process is that what I had been experiencing as panic attacks were actually autistic meltdowns. Now, when people hear the word ‘meltdown’, they automatically and understandably assume this means a dramatic outburst.  This truly is the case sometimes, however when it comes to ASD1/Asperger’s most of the time our version of an autistic meltdown is experienced inwardly, especially when it comes to females on this end of the spectrum.  We appear like a swan; graceful and calm above the water, but paddling desperately underneath to keep afloat.

Being a 22 year old woman, it was never blatantly obvious to the untrained eye that I had this condition.  This was due to me learning from a very young age how to mask my difficulties, (literal term; ‘masking’). This is a common trait females who are on the spectrum have.  From as young as toddlers we watch and mimic other people’s actions and how they communicate. We learn off what to say and do as if we were reading it from a script.  This is why no one ever spotted it; it wasn’t obvious.  Nonetheless, it was just as real.

I am so glad I have this more accurate diagnosis of Autism Spectrum Disorder. I can finally learn and understand who I really am; what makes me tick, and why I find some things quite difficult.  I am proud to be able to say I am an autistic woman.