Spy Photography’s Journals

I had such a good response from my very personal very triggering journals that I decided to share some more journal entries focusing mainly on my band photography. And because it’s related to my band photography you get to see some pretty pictures.

Sunday, July 2nd, 2017

I’ve been rapid cycling. Yesterday was probably my 80th attempt at giving up my photography in two years. Thinking about it at least.
But then I remembered I’m seeing Sorority Noise in September and became excited about photographing them. And Speaker might next send me to Grinspoon. So I’m starting to remember why I wanted to be a band photographer in the first place – to both see and photograph my favourite bands live. Somewhere along the way I lost sight of that direction and saw it as a monthly attempt at getting the most hits and likes on social media. Tim Rogers was right – it is toxic.
It’s good to have another long break though to spend some time watching Stan or Netflix, play video games and work on upgrading my PC.

Tuesday, August 1st, 2017

I’m always beating myself up over everything.

In order to explain such a statement properly I’m going to have to talk about the second last gig I shot. Getting to shoot Grinspoon came upon pretty suddenly, although I did apply to shoot the show in the first place I didn’t think I will get approved. The last show I shot for Speaker TV was The Living End and that was only because I was piggybacking on the end of two other photographers who didn’t end up on the list but were approved by their publications. I had no such approval but I kept quiet, didn’t once utter I had official clearance so technically I didn’t lie about it. I had traveled from Sydney to Wollongong with a heavy bag full of expensive lenses – I wasn’t going to cloak that. If I didn’t get my camera in I would rather have walked out, gone to a pub and sulked rather than cloak $4000k worth of equipment.

Phil Jamieson from Grinspoon at Enmore Theatre, July 7, 2017

Phil Jamieson from Grinspoon at Enmore Theatre, July 7, 2017

I wasn’t really prepared to shoot Grinspoon when I was approved but I did feel confident about it. The day of the show I felt pretty positive when I cleaned my lenses and packed them away in my camera bag but that night when I was walking to the bus stop out of nowhere I had trouble breathing. ‘What is this?’ I thought. ‘Is it anxiety – from where?’ I kept feeling anxious as I went onto the bus. I tried to analyze the situation in my head. I was going to Enmore Theatre in Newtown, a venue and area I was really familiar with. I normally felt this anxious before a gig if I had to go to a venue I’d never been to before in an area I wasn’t familiar with. This didn’t make sense. If that wasn’t bad enough certain elements within my environment that should be static started moving around and going in and out. I felt like I was on some sort of drug. Was this what they call derealisation?
My nerves continued even when I got inside Enmore Theatre but eventually they dissipated as my central focus was put on photographing the opening band. During Grinspoon I was stressed out over missing all the best action shots. It was hard to find a good spot to shoot from because there were these machines lined up at the very front of stage that spat out confetti and smoke. The effect looked nice but they were dangerous for me to get too close to.

If I’m to be completely honest I’m really disappointed with how the photos turned out and I’m confused to as why people really like them. I missed all the good action shots and I should have chosen a wider lens as my main instead of flaunting my 70-200mm wonder lens. But it was a learning curve for me and I will get my chance to do better next time.

The next gig was Pete Murray and I was even less prepared because I forgot I applied for it at all. The whole night I didn’t feel like any of my photos were in focus and I had to keep adjusting my settings. Then when I got home and actually looked at them on my computer the shots I thought were blurry were actually quite sharp and in focus. I had the same problem at Grinspoon – I thought hardly any of the photos turned out after I took them, and to be honest a lot of those photos ended up being in focus too.

So, this is my problem. I keep thinking I’m taking horrible and under focused photos when I’ve done the opposite. It’s frustrating for me because when I think I’m taking bad photos I basically give up taking any more. Like at Pete Murray I didn’t make many attempts to get a shot of the band from the crowd because I thought hardly any of my photos from that night turned out.
I just need to be a bit easier on myself because beating myself up over taking poor photos can ruin my whole night.

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Pete Murray at Enmore Theatre, 29th July 2017

Wednesday, August 02, 2017

 The next gig for me to shoot may be New Found Glory from the USA. I got the e-mail from Speaker TV about it yesterday. I have a bit over a week to prepare. I need to remember to remain confident, just not tire myself out too early or drink too much; that will be easy as most alcohol in music venues is rough on the palette, worse on my stomach and overpriced. I might check out some live photos on them as well as videos to see what lenses I should use. I’m expecting there’s going to be a lot of jumping around. I have seen NFG once by accident really. They were a support act for a band I was seeing. They were good and they didn’t have crazy energy so it should be a pretty easy show to shoot.
I want to review the show as well. I have plans to start up my own arts and entertainment site – reviews, opinion pieces, articles about the culture surrounding music, gaming, films etc. I’ll keep the name to myself until it goes live.

I’m going to have to make a list of all the bands I’ve applied to shoot to remember that I did and so I get no overlaps. I think I have Hawthorne Heights this month as well as You Am I. I’m more excited for Alex Lloyd and Sorority Noise in September and even though AFI is the night after Llyod’s gig it would still be good to go. I meant to receive my long waited copy of Destiny 2 on September 6th too. If I get approved to shoot Alex Llyod and AFI then I’ll have to wait at least a week to play it. It suits me fine. Alex Lloyd’s music holds a special nostalgia for me and it will be great to see him live, even if I have to take photos from a balcony at the back of Leadbelly, because there’s going to be dinner tickets which means I can’t get in the patrons way that paid $112 for a ticket. The biggest challenge in photographing both Alex Llyod and AFI will be in the fatigue that will follow as my chronic fatigue has proven to become quite a problem for me.

My Canon 70-200mm f/2.8L IS is being delivered to me too. So by the end of the week I can have a play with that. We can see how good its image stabilisation really is.

Right now I am content to continue reading Alex Rider, applying for both writing and photography jobs, writing blogs, working on a screen play, exercising, watching Skins on Netflix and maybe playing some Iron Banner in Destiny 1.

No rest for the talented. Give me a break! I was really depressed about this before, so now I’m feeling overconfident and a bit arrogant. I’m not very good at balancing my emotions. Extreme highs or extreme giving up – that’s the best you can expect to get out of me.

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Autism, Distrust of Doctors, and Mental Health Awareness Campaigns

Trigger warning: mentions suicide, too many times.

Recently Canada held its latest Bell Let’s Talk Day where people tweeted about mental health awareness and for every time #bellletstalk was tagged 5c was donated towards mental health services. Celebrities were especially vocal in getting the word out. William Shatner had tweeted about it with that hashtag about 12 twelve times before I even caught on. When I got the gist I was reminded of R U OK? Day, which we have in Australia so I thought I’d like to join in. But as I read through the many tweets they seemed to be statements I’ve heard many times before.

Such things like:

“because mental health is real.”

“it’s ok to not be ok.”

“it gets better.”

“all it takes is asking someone ‘are you ok?’ to make them feel better.”

It made it hard to post anything because I didn’t want to post anything too graphic or disturbing.

Eventually I went with: “Had rampant suicidal thoughts earlier but got through it. As always. Keep moving on” #nostigma #bellletstalk

40 minutes earlier I had constant suicidal thoughts and was in such a deep state of depression I couldn’t move. So, can you imagine how I felt for someone to write “it’s ok to not be ok?” Sure, it’s ok to not be ok…until you want to commit self-harm. It’s very hard for me to tell the difference between sadness and clinical depression, just like it’s hard for me to tell the difference between happy and hypomanic, and all those emotions in between.

Don’t get me wrong. It’s great that people supported this and worked hard to end the stigma around mental illness, and drowned out the voices of the denialists and trolls, and I’m especially grateful for celebrities that helped get the word out to their millions of fans, but as someone who personally experiences mental health issues I felt like I wasn’t counted in the conversation. I’ve moved past the whole ‘mental illness is real’ thing and I just thought after all these years of mental health awareness we had reached the next step to actually talk about mental health; the symptoms, the heart ache and to actually engage with the suffering. That’s what was so important about #BellLetsActuallyTalk – it opened up the conversation to people with lived with mental health issues everyday. What started as people of colour having a say in a day they felt left out of, soon contributions from all ranges of minorities came in and real sufferers of mental health issues and I took the opportunity to spout all my frustrations with biased and incompetent doctors. I ended it with asking everyone whether disabled people with mental health issues were counted in #BellLetsActuallyTalk as well.

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All the Bell Let’s Talk stuff actually distracted me from what I planned to dedicate my entire Australia Day doing, and that was teaching people about Aboriginal Australians, especially their horrid history under English colonisation and their current situation in the communities but by the end of the day I actually didn’t want to change the date or even abolish Australia Day. But more on that later.

For years I have been dealing with doctors who wouldn’t take my concerns seriously. It’s hard enough to have poor communication skills from autism and difficulty even getting words out in a clear concise way because of chronic illness, but then having a doctor disregard it because they don’t think you’re even self-aware enough to know what’s going on, is frustrating and discourages me to keep going to the doctor when I even have physical health issues.

The very first time it happened was before I was even diagnosed with autism. It was along the way. I first thought I may have dyslexia and the psychologist I went to see was entirely dismissive and hit me with a severe depression and severe anxiety label – all from doing an IQ test. This was back in the day when dyslexia was only diagnosed to people with an IQ of 80 or under.  Another time was when I had a painful and constant tinnitus. The doctor looked in my ear and said I said some wax and left it at that. The same doctor was in complete denial when I thought I may have hypoglycemia and asked for a referral to see neurologist because I was having seizures. My psychiatrist didn’t believe me either and it took me a few years to realise that the reason was probably because I reported it as a side effect to Ritalin. The doctor who made me come to that realisation said that there wasn’t anything wrong with having extreme sensitivity to light, and said it’s better to wear sunglasses everywhere to protect my eyes from the sun. Medical professionals don’t like it when you say something nasty about those drugs they’re paid to prescribe you.

None of them were as dismissive as my psychiatrist though. I have cyclic moods, which is basically what I call undiagnosed symptoms of bipolar. My psychiatrist has refused to even asses me for it despite the fact that my symptoms were ruining my life. You can imagine what untreated bipolar looks like. For a long time I saw my mania as a positive too. I couldn’t really commit to a project unless I was manic because I had more energy and more ideas just popping into my brain. In those last days I took Ritalin I just take it to get manic. I could cut a pill in half and still become manic but 20mg (less than 10 year olds are dosed with) was what I’d take to have complete wild ride and often ended up with me going into psychosis and an intense teeth grinding session.

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This photograph is a trigger.

Being deprived of the treatment I needed, my mum not believing me as much as my psychiatrist put me into a deep depression and I even used to tell him when I felt suicidal, right at that moment. I’d tell my mum that I felt so suicidal that I’d run out onto the busy road just outside the medical centre, and I was just ignored.

So I gave up. I gave up asking for help, for anything. I embraced my mania and it took a long time to see it as a negative. I let a GP put me back on anti-depressants so I could actually leave my house without having PTSD triggering and kill the delusional thoughts. It worked but 3 weeks later they made me hypomanic. I stayed on them for a year or two then thought it was probably best to have less hypomanic episodes, so I stopped taking the meds and now have less hypomanic episodes but now deal with short but intense depressive episodes.

For the 6-7 years I’ve been aware of my mental health issues I’ve had to develop my own coping mechanisms to deal with them and stay positive about where my life is heading, and just keep getting through everyday. There were no social lessons after my autism diagnosis. I’ve been teaching myself how to read body language, mimic it and how to start and keep conversations going and everything about social customs, except hierarchies because fuck that shit. I can learn social skills, apply them but I’m not joining the collective consciousness that tells you what’s a suitable subject to like, or a suitable way to dress and to only surround yourself with suitable people. If you’ve ever made fun of someone for liking a subject you felt was too nerdy or strange, or laughed at the way they dressed, or thought yourself smarter than them then you are a part of that consciousness.

Likewise, I’ve had to learn similar ways about how to minimize my symptoms of mental illness. It’s been less about learning things from others – although everything I’ve learned from social behaviour can help me regulate my own emotions around them – but is more about employing self-therapies like cognitive behavioural therapy or using the only helpful advice a psychologist told me about anxiety: the thoughts are in no way based in reality.

My seizures and hypoglycemia are controlled through strict dieting; no caffeine, very little alcohol, nothing high in sugar or salt. Because of my often low blood sugar I have to eat small meals every 1-2 hours, sometimes I can get away with not eating until 4 hours later. But if I put off eating when I begin to feel weak and light headed I can end up fainting, but usually just experience a lot of pain, particularly in the stomach and arm muscles. And migraines.

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Getting back to mental health awareness campaigns, I think they’re helpful, needed but they need to expand. They need to work out a way to include everyone who suffers from mental health issues and let people tell their stories. Every R U OK? Day I tell people to share their experience with mental illness. At first it was something I just ranted about but it took off and I just thought this isn’t such a bad thing to do. R U OK Day? is usually a day when people are encouraged to ask people ‘are you ok?’ and it angers me because they’re just doing it because they got told to, and they’re just going around asking everyone that. The day is actually about opening up the conversation on mental health so I’ve hijacked the day to encourage everyone going through mental illness to share their story, current feelings and where they think mental health awareness should be heading.

There was another mental health awareness campaign launched in Australia called Mental As. The ABC showed a range of programmes centered on various mental health issues from all walks of life. It was a great way to spread mental health awareness by showing how it affects a variety of people, like comedians, actual residents in a mental institution and people who were living normal lives that were disrupted by suddenly developing bipolar disorder, but there was a strong emphasis on mental illness being overcome or people handling their bipolar on medication. Happy endings are great and all but they don’t reflect the reality for many people in low socio-economic areas who can’t access or afford the services they desperately need, and don’t forget about what I said about biased doctors earlier.

Professor Sir Michael Marmot, director of the University College London’s Institute of Health and Equity, says that mental health issues are caused by the conditions of a lower working class, unemployment and lack of government spending towards public healthcare, and I think that can be true sometimes but I think for many of us those mental health issues are separate; genetic or triggered by the environment, and not just in the way Marmot thinks. I can certainly pinpoint the exact moments my mental health issues triggered because of environment stressors. I can give the date, time, location and even say what the type of weather was when my PTSD developed, but cannot give you any specifics of the actual event. Most of my anxiety and cyclic mood-like symptoms are basically permanent side effects to medication which is why I’m strongly opposed to drugs, all forms of medication except for codeine for severe muscle pain I experience.

But I’m not completely denying what Marmot says. Being low class and unemployed certainly adds to the stress and therefore exacerbates the symptoms of mental illness. I certainly experienced more suicidal thoughts when Tony Abbott proposed changes to the disability support pension and made all recipients under 35 years get re-assessed. Not one day went by when I didn’t feel extreme anxiety or depression. I even had a suicidal plan. My financial anxiety often got to that point in 2015. I actually became so manic that my words became unintelligible. It was my anxiety experienced during the assessment interview that made them decide to keep me of the DSP. And now with the Turnbull government forcing me to into work that has me two days a week looking for jobs that I don’t have stamina to do and none of the social skills the employer expects, I feel a mixture of anxiety, suicidal thoughts, apathy, and complete contempt of my job network consultants who are nothing but pawns of a Gilliard government plan to kick 400,000 disabled people off their pensions and into low paid work. They get no respect from me.

They could take a leaf out of the Centrelink whistleblower’s books and risk losing their jobs by doing the honorable thing and tell the public how much pressure the government wants them to put on people on disability and the dole to just get a job; bullying and  threatening to cut them off their payments at any sign of resistance. And believe me there’s a lot. Not a day goes by where not at least one person argues who gets passively aggressively talked down, or they end up storming out and risk getting their payment suspended.

There’s another source to my anxious and suicidal thoughts: Centrelink are through the Turnbull Liberal government using an automated system developed by the Labor government to weed out welfare cheats by comparing payments with income statements, and after they’ve found ‘evidence’ of the over payments they send out a letter declaring someone one welfare pay back up to $3000-$20,000 in over over payments. Problem is most of these declarations are false. It’s been proven that people either owe less or don’t owe any money at all, and at least 280,000 have received such letters, and the government has extended its number of victims to people on the aged care and disability support pension. People have already become suicidal over it but what do you expect will happen when they target people who are already dealing with suicidal thoughts? Now doing something as simple as checking the letter box gives me panic attacks.

So, there’s a lot more involved than just asking for help for mental health issues. Some people ask for help only to have their concerns shrugged off by doctors and there’s those who can’t even afford to get the right care, especially in Australia where GPs are refusing to bulk bill and the government tries more and more sneaky ways to privatize Medicare. I’m fortunate that I live close to a medical centre that still bulk bills. But with all the extra pressures of living with pre-existing mental health issues and living on handouts below the poverty line in low socio-economic areas with crime, deeply set racism, job instability and rising rates of unemployment and fearing that things will just get so much worse, there’s not a lot of hope people can have to receive treatment for their mental health issues even if they do ask for help.

UPDATE:

At the moment I am seeing a GP who is taking my concerns about having mitochondrial disease and chronic fatigue seriously. He has even given me bipolar assessment questions and has even tried to reassure me of my anxiety about having a blood test taken. And I’m finally looking into my foot pain from having very flat feet. It’s such a breath of fresh air to finally have a doctor that will listen to my concerns.

xSpycraft

Nightmares Coming True: Fear of Change in Autism

I’ll explain that title later.

Change. It’s a simply thing really. Something we all have to go through. We face it so many times every day that we barely have to think about it. It just happens. But for some people it’s a constant torture on the mind. If you have a basic concept on autism you know people with it are very rigid thinking, keep to a very strict routine that if broken may have them wailing like a banshee, or in high functioning people, makes them react loudly and violently in tears or in threats or their body and mind just shuts down. And that was just when Syfy changed the time and day they showed Stargate SG-1.

Change is very serious concern for those with autism and indeed this person with autism. By now I could consider myself completely overcoming autism if it wasn’t for the fact that I can be paralyzed in fear by sudden change. I know how to have conversations with people. I can do small talk. I don’t always make eye contact and I can still interpret things in very literal ways and have an incredibly logical mind.

Now to explain that title. Change does feel like a nightmare coming true. For those scared of change it’s always on their mind; it has to be because it feels worse when they didn’t prepare for it. So, they learn to always plan in advance for any surprises. In this way emotional reactions can be controlled because they play out scenarios in their head and in the comfort of their sanctuaries (their house, somewhere they feel safe) they can work out the best way to react to a new situation.

Recently, I’ve had to deal with change mostly by force. I had to start work in Western Sydney. My disability job operator met up with me at a train station and took me to the facility. The next day I did it all by myself. It was scary but I adapted and now I think Western Sydney is better than my own area. It’s quieter at least.

After I was able to do this by myself I thought I should be able to go further. So, I’m planning a trip to Melbourne to see my favourite band Dallas Crane. I’ve got AAA passes for me and my sister so I know I’ll at least be able to go to the show if tickets sellout. But I’m still trembling inside. I hate airports because I’ve never been to one before. By now I know everything that I should expect to happen there because I’ve been preparing for it for years but I haven’t stepped foot in one yet.

A few years back my family went to Portland and I didn’t go because a few days before the flight I didn’t want to go, even purposely kept myself sick so I wouldn’t have to go. Most people blame my mum because she actually asked me if I would be able to cope, but the thing is my sister in Portland really had to go to every effort to make me feel ok about going in the first place, and anxiety creeps up on you. Even when you put a show of strength it’s always there and the smallest thing can trigger it. So, I don’t blame my mum. I thank my mum for being the only one who understood what I was going through. I wasn’t ready to fly to Portland. I didn’t want to anyway. Another thing people need to learn is autistic people aren’t usually interested in the same things as other people and they can’t feign it at all. At the time I didn’t like weddings. I didn’t like the fake sentiments that people would show at them. And BBC’s Sherlock agrees with me.

The second time I was meant to catch a plane was to see another favourite band of mine, The Ape. I was all excited until my sister told me all about going to the airport and catching the plane in an attempt to calm my nervous. It didn’t work. I felt so anxious that I could even hold my head up and then I went to lie down on the couch and shook for a little while. Then I couldn’t even get free tickets to the show and it was over.

This time I’m not exactly anxious about the airport or the flight, yet. I am anxious about plane tickets being bought. I’m anxious about having to go on my own. I’m anxious about not being able to go and letting the band down. I’m anxious about letting myself down. I could easily ditch the whole idea and feel better again, but I would feel like a failure. I would still have not overcome this obstacle. For many years I’ve been building up on my social and what is called life skills. This is the next step and I know there are people who do this all the time. But they’re not autistic. And for those who are either get or have had help to get them to that point. It’s bad enough I’m beating myself up for letting myself and other people down that I don’t have to feel depressed over the fact that this is such a simple thing for someone to do.

So change sucks. In fact, lately my eating routine has been completely thrown out of whack that I’ve lost my appetite but still have hypoglycemic crashes. When I’m hungry I feel sick but don’t even feel like eating. That’s something else I have to deal with on top of this. My head is in such a mess that I don’t even know how I can begin to start organizing it again.

My last panic attack was when I had to go back to the location where I was almost mugged which began my 4 year PTSD. It’s not as bad today, well, I thought it wasn’t til I went back. I started to panic, feel restless and agitated and wiped away my tears in the rain. So close to home but so far away. And I did beat myself up about being unable to do something so simple. But then a voice in my head reminded me I have PTSD. It’s why labels are so important to me. I feel like less of a failed adult because of all these diagnosis’s I have. For example my ADHD usually makes me feel stupid. I can barely remember anything. I can barely focus on anything. Sometimes something ignorant slips out of my mouth. Lately I’ve been beating myself up about my mood disorder. Bipolar maybe. I don’t know. Doctors don’t care enough to do the assessment. So I can’t get the meds. I don’t even want the meds. Medication is nasty stuff. I learned my lesson after taking Ritalin.

I suppose when I meet a new person that I really like I don’t want them to know about all my problems but I know in time they will eventually be seen. I guess that’s what I’m just concerned about. And the whole change thing. And the fact that I don’t even know when and how much to eat.

And now I’m depressed. Again.

On Being A Selfish Person

I’m a selfish person. I must be – people tell me I am all the time. “You’re so self-centered,” “you need to think about people more.” My own mother said that. I mean the person who raised me thinks I’m a selfish person. She thinks I have a choice in the matter.

Fact is sometimes I’m not even aware about how much I should think about a person. I try my hardest, often after I realise I’ve upset them or insulted them beyond all forgiveness. I’m an honest person and don’t agree that people should hold things in or lie just so we can all better get along. I try my best to not be rude and if I’m actually aware about what I’m thinking about saying could be misinterpreted I’d rather say nothing at all. I’d rather just ignore the whole damn situation.

Most people respond more emotionally to me. I react with heightened and unregulated moods, but I’m for the most part able to analyze my own emotions, re-direct my thinking and choose my words carefully so I don’t hurt people too much. Or I just ignore the situation.

If people still get hurt by my somewhat Vulcanesque response then it’s their problem. I went to a whole lot of effort to not just vent my frustrations at them and I can do no more. I’d like them to completely detach their emotions using kolinahr and come up with the most logical solution to this little dispute that’s only happening because people are letting their emotions get the better of them.

Another thing is that I can get so absorbed in what we in autistic community call a special interest that we can completely be blind to what is happening in the world outside of it. It becomes our whole world and completely takes over our personality. Not in the same way a personality disorder does. It just changes a few characteristics around, like for example I might be playing my Batman video game for hours a day for a week and my hometown might just start looking like Arkham City. Or all I’m capable talking about are Marvel comic books and will relate almost every subject no matter how disconnected it is to it. I’m not even making this up. My whole voice, dress and mannerisms can mimic that of one of my favourite sci-fi characters without any conscious effort on my part.

Those interests become the center of our world and everything else is in the background or puts up a barrier between us getting to spend time on them. They become less important.

If you think this makes me a selfish person then fine, think that. I’ve worked very hard to build my empathic skills and there are still a few gaps. I do eventually get a basic idea of what someone must have been feeling and I learn from that and I try my best to adjust my responses based on that understanding. That’s also called emotional intelligence.

Theory of mind is when a person has a basic idea of what people will be collectively thinking about. All humans follow a pattern of behaviour and I think learning this pattern made it easier for me to gain a better theory of mind. People without autism or social development issues will have this inherit ability from a young age and be able to pick up on the feelings of others more and more as they grow. I wonder if this is where the whole ‘you know what I mean’ statement comes from. Because I have never understood what a person meant when they said it. However, I could tell they got impatient with me if I said I didn’t so I just said yes. Then when my mother said it to me it was more like, ‘come on, YOU know WHAT I MEANNNN!!’

I apologise to my mother for keep using her in examples but I must tell the truth. The truth was I was a very confused child who never quite understood why people got angry with me, and I was mostly scared into changing my behaviour. I may have been responding to what she said with exaggerated emotions when any other child might have not even blinked at her disapproving tone of voice. Bringing this up may help other parents with autistic children properly respond to them. We can’t just be brought up the same way as non-autistic children and there was hardly any education for this twenty years ago. It’s now known that certain words always make us feel threatened; saying ‘no’ is like a slap in the face. You might have well said ‘no, you little retarded monkey. My God, are you so dense. As if I would have said yes. Now go chain yourself back in the attic, you’re an embarrassment to be called my spawn.”

That might have been a slight exaggeration but I just mean we can feel threatened by fairly innocuous responses. When I say ‘no’ myself I utter it under my breath as though it’s a forbidden cursed word to use. I anticipate a challenge and when someone just accepts it I return my sword to its sheath. I still look on like a guard dog lowly growling to give a warning to not come any closer.

Socialising is an agonising business for me. I can’t usually say much after the greeting and if I do it’s an impulsive jumble of the latest subjects that has excited me. I find it difficult to make eye contact and talk at the same time or even at all. It really depends on my mood. If I’m a lot more hyper than usual I’ll probably make too much eye contact and bounce up and down on my heels, and won’t be capable of zipping my lip. My thoughts are even more randomised and it becomes excruciatingly painful to allow pauses in between talking.

I’m usually fine to just chat to people about my interests, or the news, if I’m actually going out and doing something, or my cats, but when someone says something unexpected which my oppositional brain just pegs as a good opportunity to show that I’m an individual with my own opinions, I might end up in the middle of an argument and the other person either gets exasperated and gives up or launches an offensive of their own in which in this passionate moment I will refuse to back down. Sometimes I will be impossibly to convince, even if my opinion is completely ludicrous. And yes, it has been. Basically, when someone is manic they feel like they are in a higher state of enlightenment and everyone else is just too stupid to get it. They’re just being unreasonable and deliberately disagreeing with you, refusing to open their minds up to greater ideas that challenge our conventional ways of thinking, and the laws of physics sometimes. There’s a whole lot more to it but I won’t go into it, and yes, I do become manic. I possibly have been while writing this post.

I can live with the arguments, even though they throw me off what I was going to talk about because I must be prepared for everything. I don’t do well with change. Yes, even such a small change as someone bringing up a topic or responding in such a way I didn’t expect. How dare they!

The social drama is where I really get stuck. It’s when people are angry enough to stop talking to me or having lasting negative feelings toward me. I might have personally insulted them, at least in their mind or I may have just…pissed them off. The only way I know how to get out of it is to explain the situation rationally. “Oh you thought I…no, that’s not what I meant at all,” or “I was acting that way because…” It doesn’t have the desired effect which befuddles me because I’m putting out factual information, without any feelings involved. I think the correct way to do it is say something like ‘man, you’ve been so good at putting up with me. Wow, you are strong to just ignore me and then be a complete passive aggressive bastard. Yes I was wrong and you were right. I suppose if I want things to work out I should just grovel on hand and knee for your forgiveness and essentially lie and say that none of it was your fault and it was all down to me – you know, the one with a goddamned social communication delay. How could I just miss those cues. I mean, it’s not like I’m autistic, or anything.” Woops.

Some sarcasm may have been used in the above paragraph. Oh my God, I can actually do sarcasm! Does this mean I no longer have the autisms?

Sorry. I’m venting.

I’m basically saying that I don’t agree with many social conventions, especially the one where I have to continually stroke a person’s ego just so they like me. I’d rather just go through friendships in a trial and error way. As a child I had no interest to be social, I was pressured into wanting it because people thought it would make me happy. It’s made me see that people are bullies, not willing to listen to reason, you must always agree with them even if you are smarter and think they can control you. That’s not all from one person. I’ve had good times with friends too. Early in my social development my skills were so poor I didn’t want to be more than a drinking buddy with people. But now I operate from a strict ‘Kiss and Make Up’ policy i.e I want to be able to maturely discuss our disagreements and not just go back to pretending everything is normal between us. I grew up having none of that until I moved out and lived with my sister. We apologised to each other and explained why we got so mad in the first place. Now I won’t take anything less. And if people aren’t willing to talk through our problems then I’ll completely close myself to them by not discussing any personal matters. I’ve been hurt so many times before and I’m just not going to risk getting hurt again.

For now, I’m happy to be the lone wolf. My interests keep me occupied and my strong will helps me be a rational person even when deep down my emotions are screaming out to be heard. The whole ‘willpower’ thing I actually borrowed from The Green Lantern film and is not based on any peer reviewed science studies. It basically helps me deal with my emotional responses.

I like having friends. I like having a good time with them but I think for now I’ll just have what I call a superficial relationship with them. The drinking buddy is back. I don’t really want to know someone enough to discover how much they irritate me because almost everyone does.

I know I’m not being willfully selfish. I have autism which means I have a bit of a wonky theory of mind ability and don’t always empathise when I should, but I’m not incapable of it. I feel guilty when I realise when I should have been thinking about another person more and I keep trying to do better. But in order for friendships to work both people have to do their part to let the other know that they care about them at all. You’d think finding someone with the equal amount of mental health problems would make this an almost symbiotic relationship but as it turns out it’s like arguing with yourself. It’s like that evil voice in your head that tells you you’re no good that you try your best to ignore, but when it’s from another person you just feel like giving into it. You’re right, I am selfish. I’m horrible. I care only for myself. So, why do you even like me?

Is there any point for me to keep trying to make friends when I keep being reminded time and time again that I don’t always care about them? Seems pretty unfair to keep putting myself out there when I can’t reciprocate enough emotional understanding they require to actually feel loved.

On Autism and Empathy

For many generations there has been a terrible notion that people with autism lack empathy. I think this comes from the old way of thinking that people with autism couldn’t feel emotions. Fortunately, that is no longer the most common held belief but still people and even some scientists hold onto the belief that people with autism can’t empathise.

When it comes to a human brain things are just never so straightforward. When we are infants we all do lack the knowledge that children, adolescents and adults all share at the appropriate times. For those of us with a developmental disorder like autism we may lack some but not all of the information. Throughout the years we may have picked up a tidbit here and there and gained further understanding of other people. This is often not picked up intuitively but had to be told to us by another.

So it’s true that people with autism lack empathy in a way but not completely. They are not incapable of it or learning it but may need to be told gently when they seem to disregard a person’s issue why it’s important to feel sorry or some reciprocal emotion towards this person.

Think of it like them having an ability to empathize that is like an incomplete cross word puzzle, even with half of the answers written in. You need to be there to fill in the gaps for them, and usually when you help people answer questions they don’t know it’s not screamed at them or delivered coldly.

The mainstream perception of empathy is a very superficial one too. It’s mainly about caring for others, understanding when and why they are hurting and expressing this verbally and through such loving acts as hugging. Anyone who is seen to do less than this is immediately thought to be a very self-absorbed person and by choice is not thinking about others at all.

There are really three types of empathy: cognitive empathy, affective empathy and expressed empathy. Cognitive empathy is the ability to read non-verbal body language to get an idea about what is going on in the mind of another person. This is an area people with autism are most deficient in. Research has shown that when a non-autistic person makes eye contact with another person the ‘social area’ of their brain lights up but this does not happen in autistic people, meaning that something different is happening in the brains of autistic people compared to the general population.

People with autism have difficulty reading facial expressions, gestures and tone of voice as well as more subtle hints of a person’s emotional state expressed verbally. Not everyone with autism will have the same level of impairment but there will be some impairment to warrant a diagnosis. They’re also not incapable of eventually learning to read body language and intuitively gouge what a person may be feeling through being told by more socially aware friends or through trial and error.

The second type of empathy is affective empathy which has to do with understanding when someone else is in pain and feeling their pain emotionally. This is probably the type that autistic people have the least trouble in but like I said before each autistic person is at a different level of how much they can empathise.

I can recall being a child and hardly feeling any affective empathy towards anyone, even with my few friends and family members. I barely made any change until my early 20s when I started to work on my own social skills and through the use of ADHD medication. At times I did pick up that I wasn’t thinking about people when others were. I’m a very practical person who has a sometimes irritating way of making connections out of two very unconnected subjects and making it seem like an incredible epiphany every time. Often when overcome with the joy of these ideas I can neglect to think about how my words will affect other people and they will surprise me by either calling me selfish or giving me the impression that what I said was very insulting. If you’re a fan of The Big Bang Theory TV show then think back to when Sheldon Cooper revealed to Penny what ‘just fine’ meant; basically he revealed to Penny that her boyfriend Leonard told his friends about their sexual encounter last night, which both parties reacted to rather negatively and Sheldon was left there with the sudden realization that he may have overstepped a line. Sheldon is course an exaggerated character with Asperger’s syndrome.

This brings me to another good point. People with autism are often accused of being horrendously offensive yet will be confused as of why, and the person on the other end, still fuming, will hardly explain this to them. It leaves them confused and angry at the other person for being swept away by their emotions for days while trying to work out how what they said could have led to this type of oversensitive reaction. They are often more systematic practical thinkers rather than reacting with emotions. But it’s not hard for them to feel the emotions of other people – quite the opposite.

The Intense World Theory suggests that instead of feeling little emotion autistic people feel too much and this overloads their brain leading to a very emotionless exterior, while inside they are screaming. Although eventually all this extra stress will result in a brain going into a type of safe mode which stops all the negative feelings from being experienced. It’s like when in depression you end up feeling numb.

To better understand this I need to talk about my own personal reactions to other people’s emotions. Usually when my emotions don’t match a person’s own even if it’s a positive emotion like joy, I will be under distress. I might be annoyed or irritated just by the overload of the person’s loudness and their energy. When they are angry I feel either threatened or frightened even if they are not angry at me. If a voice is raised it is like I am being constantly targeted even if it’s not about me. It’s just the emotion coming out of the person and the way I experience it.

The whole experience makes me fairly poor in face to face confrontation unless I can be louder and more threatening than that person, otherwise I’d just avoid the situation as long as possible. Most of the time I can’t express any personal information about myself verbally, and I have difficulty getting any words out in the right order and not tripping over them.

The third type is expressive empathy which I’ve already sort of gone into. People think that people who will tell you they are concerned for you are the only people that care, but this is not always true especially when it comes to autism. We just have a difficult time knowing what to say even if we’re told what to say. Some of us might be able to do that more than others; it all really has to do with how much emotion we are experiencing from the other person.

For me, I get more of an emotional reaction from the type of word used that people usually use when they are under a lot of stress already. And it’s not simply the meaning of the word but how I personally relate to that word, like if someone called me selfish. That word stretches across my whole spectrum of disorders but not as much as autism. I’ve been told during moments of great stress that I wasn’t thinking of others. I remember calmly explaining to someone that it would take me awhile to deal with this sudden change in plans because it takes me a longer time to adjust to change – and I was of course told I was selfish and need to think of other people more. You would think if I was capable of it on an intuitive level that I would. Another point that is going a bit off topic is that I can control reacting emotionally to people after being hurt by what they said and when communicating online I can take my time to respond calmly and rationally, yet the response I get it often a passive aggressive attitude ot just untethered hostility. I suppose if people think if there’s nothing wrong with their social skills and emotional regulation they wouldn’t have to just as much effort to choose their wording as delicately as I do.

And just because I can’t always express in words how much I care for people when I truly do it doesn’t mean I don’t try to show it in other ways. I will often be first to put my hand up to help people out, even when not asked for it. I give them gifts such as drawings and maybe if I see something in the shop I think they would like I may buy it for them.

I didn’t explain much about my affective empathy. Usually when I’m with one to two or more people (what I call ‘in the moment’) I will not be able to empathise as easily when the situation calls for it, even when everyone else in the group would. I would consciously know I should be but I’m not feeling anything. Eventually, when I‘m left alone and given many hours to days or weeks to think about it suddenly it hits me. Or I might be too preoccupied with my thoughts and interests or under a lot of stress because of symptoms of mental illness and I’ll just overlook people’s feelings and they will make me aware of the fact in a very harsh way, and still lost in self-reflection that I continue to fail to think about them I will erupt with as much anger, and only when I have time alone to rationally think over the situation will I realise my error.

I don’t always need to upset people to become empathetic though. Sometimes it just takes a shift in emotions from low constant thoughts of self-doubt to high states of over confidence and within this I find ways to better empathise, even over empathise with people and take it upon myself to make other people aware of their apparent lack of insight into another person’s situation. But this has nothing to do with autism and is more just a personal thing. Well, it could have something to do with it. It’s very hard to know sometimes.

If I’m in an environment that’s less chaotic and fast paced as most social situations are then I can take my time to see from another’s perception. I get most of my education from TV and film especially the over emotive ones because it’s shown in such an obvious way, sometimes it’s like they are explaining the emotional states of the characters to kindergarteners, or maybe I’m just better at picking up on it now compared to how I was before. But I seem to go for hysterically over emotive storylines in science fiction shows such as Caprica and the Stargate franchise, or TV drama such as Parenthood and even Wonderland, though to be honest some of the NT social issues in that show seem to grate me. I remember when I started to watch Parenthood and I just thought why do these people lie so much – you can plainly see that they want to tell the other person the truth and it’ll be better if they did – so why lie? It relieves me when Max’s parts come up in the show, but then of course his family seems to overreact to the socially inappropriate things he says. What I see is a teenage boy that is willing to share with people and excited to be given the chance to do so, yet he gets shut down because of the content of his subjects and the abrasive way he delivers it.

I do care and empathise with the people that I know really well although I don’t often show it through expressive empathy. I’ve gone out and hung out with people when the environment was particularly uncomfortable to me and the event in question wasn’t very interesting to me. I just wanted to be there for the people I loved. When I’m under too much stress or preoccupied in other ways then I’ll probably not be as willing to go out, but I’ve always done things to please people even when risking my own mental health.

To be honest I get the impression that I still have major impairments in my ability to empathise compared to other people with autism that I talk to online. I often do put my interests and wellbeing in front of people. I often see what I can get out of a social situation without giving the other person much thought, so I suppose I have a lot more training to go through before I can confidently say that I do have about as much affective empathy as most autistic people that are just as high functioning as me.

I think I have good cognitive empathy when it comes to reading facial expression and tone of voice. My ability to look for connections or patterns helps me out a lot when it comes to understanding human social behaviour. There are patterns everywhere and if you follow it you almost have a psychic ability to know what people will do next. I struggle to notice gestures and subtle hints in words though, and sometimes I think they are being used when they haven’t been. When it comes to understanding the mind of others I am pretty hit and miss, I think that means sometimes I guess correctly and other times I guess incorrectly or completely fail to notice that people are having a different opinion or reaction to me at all.

Expressive empathy is where I fail the most. When near people who are under great stress I have flat effect and a blank mind. I use avoidant behaviour to overcome the awkward and distressing feelings. But I do show people I care through doing something practical to help them or at least draw them a picture.

So, there you have it. People with autism do in some ways lack empathy but through life experience and self-training they can build upon their skills. And even when they think they have an average to high skill in it there might be times when they completely fail to empathise at all, and may never quite get the expressive part down. But at least you know now that they still do care.

More thoughts about ‘Kids On Speed?’

Firstly, I want to thank everyone for the feedback I have received for my critique on ‘Kids On Speed?’ at Gina Pera’s (author of ‘Is it You, Me or Adult ADD?’) website ADHD Rollercoaster. You can check the post out but I must warn you this was my reaction after just watching one episode. After watching all three episodes I got a firmer grasp on the documentary.

Now I don’t know if it’s because of the poor sleep I got last night which has made my head such a mess today that I keep thinking how young Seth is doing, but I wonder how the poor boy is doing. All the children really. I can at least get updates about Corey from his mother’s blog but I still wonder about how the other children, especially Seth and Samuel, are doing.

Samuel reminds me of a young boy I knew that was diagnosed with ADHD as young as 2. He had oppositional behaviour too but my mother actually bonded with him quite well and got to know his softer side. She was a teacher of a Sunday School class he was in. I wonder how he is doing as well. He might be 14 now.

I suppose I’ve never really felt so involved in an Australian documentary before but the film makers were successful in making me feel like I got to witness the children’s everyday lives and I really felt like I was standing around with the film crew and not sitting on my couch in front of flat wide-screen TV eating a bowl of chips so I could actually sit down and pay attention.

The show had such an impact on me that I still do think about it from time to time when I’m in the middle of working on something, or reading, or watching TV and get distracted by my thoughts. It probably has a lot to do with it being Australian so it’s like this is how it is here and not in another country. I’m especially now aware of the lack of services for ADHD in schools and for the children and family in general and not just the lack of help for adults.

I really want to help increase that awareness in October, though I’m set on writing about the ‘space cadets’ of ADHD. I want to get people away from thinking ADHD is mostly about hyperactivity and challenging behaviour, though it exists and these children (and adults) need help controlling those symptoms so they can really live a fulfilled life, but so do their less energetic and foggy-minded cousins.

It surprises me that I was once dealing with the issues of that group. I’m now very active and occasionally my hyperactivity and impulsivity can get out of hand. But unlike the way ADHD symptoms usually manifest, my more hyper symptoms seem to cycle and usually end in depression.

One last thing I’d like to mention about the whole ‘Kids On Speed?’ series is that the discussion on the ABC’s Facebook page, beside few ignorant comments about children needing a good hiding and well meaning people pushing elimination diets onto parents with children with ADHD, were comments from the parents who dealt with the same issues everyday and the parents from the show themselves who filled in gaps about some treatments done that were not explained in the show, and most of my questions were answered. For one, I realised how pointless it was to give advice to the parents about teaching new skills to the children when the program was shot sometime last year. And also, I’m not a parent.

It was good to get some positive feedback about my own comments which was just factual information about how ADHD is neurological disorder and not a problem with the gut that leads to the behaviours – though now I will consider the same symptoms can happen when someone has food sensitivities – and about my own experience as an adult with ADHD, and I got some encouraging words back from the parents on the show, which really impacted the way I felt about the show. It was just really an inspiring community to be in.

So yes, another short post – don’t get too used to it – after a day of being completely unfocused, impulsive, hyper and unorgainsed. It’s rewarding enough for me to even be able to write this much.

Why Does She Look Like A Boy?

When I watch my young nieces play with fairy toys and show off their latest little dresses I sometimes wonder whether they had a choice in liking fairies or dresses at all. Sure, the oldest one loves her princesses and unicorns and the younger one, well, I’m not quite sure. She reminds me most of me. I know she loves cats at least.

I wasn’t given the choice, not at first. I was put in dresses I hated wearing and by the time I was old enough to dress myself I stopped wearing them. During those years I still had the girly stereotype pushed upon me as though the way I chose to dress and style my hair was wrong.

These days I look around at people who watch me or talk to me and I don’t get the usual feelings I did when I was a kid, ones where I felt judged for wearing jeans, a t-shirt and had short black hair with a wispy little fringe. And the two dozen or so hats I owned. These days girls can dress how they want and people don’t give them as much grief as they did in the early 90s. At least, that’s what I’ve gleaned from my observations. I haven’t set foot in a school playground for a long time. I would begin to raise eyebrows if I did.

I’ve been told all my life to act more lady-like in some of the most ridiculous ways. It was hinted to me that I should want to have a small fluffy dog instead of the large wolf-like breeds I often wanted. I even got told that girls drink wine and guys drink beer. Not being one to back down to social conventions I stood my ground, called the person old fashioned which was received as an insult – because telling a young woman she’s acting more like a guy because she chooses to drink beer isn’t insulting enough – and then returned to the drinks cooler and picked up another beer.

I have heard snickers from strangers about me being gay but I’ve taken it upon myself to only be hurt by the truth. Just because I dress a certain way and keep my hair short doesn’t mean I’m gay or want to be male. They’re just clothes and a haircut. I come from a family of three girls and one boy and I looked up to my brother because he was the less bossy one but I was still intimidated by him a bit especially in his teen years. According to some I worshiped the ground he walked on and what he was into I also wanted to be into.

Even earlier than that I was deeply absorbed in children’s films and related most of the young protagonist who was often male and when I like characters I tend to dress like them, mimic their accent and mannerisms and feel like I am them. Because of an isolated childhood of having my own voice stuck in my own mind because of a severe social anxiety disorder called selective mutism and autism that made me feel comfortable in this isolation, I spent many hours in front of the TV watching such films, from The Never Ending Story to the Home Alone films and The Three Ninjas and hell, even Small Soldiers in my teen years.

I really do believe that early in life we’re influenced about how to dress and act by the people around us and I ignored a lot of those people, had absolutely no interest in fitting in or sharing with them and was influenced most by the films and TV characters I watched.

Androgyny is a word that often has a negative connotation attached to it in Western society because if you don’t fit society’s view of what a girl or woman should be then you deserve a label such as tomboy, something I was called quite a lot in my childhood and teen years. It never really bothered me much being called that because I liked being different but at the same time knew there were others out there like me. To be honest I see nothing negative about being called androgynous.

I’m very comfortable with the way I am, the way I dress and my constant need for a messy mop of hair that tends to stick out. It must have first come from my desire to look just like an anime character. Then, in my early 20s I seemed to fit snuggly into the emo scene and now I both watch and photograph a lot of rock bands with unkempt hair. There’s also the whole writer thing; if I’m spending most days locked in my room in front of a PC I really have no need to keep my hair tidy. Seems a waste of time to me too as I seem to just end up running my hands through it in frustration over having absolutely no focus on the topic at hand be it writing a few new scenes or reading a physics or mental health article someone posted on Facebook.

There was a time where I tried to dress more ‘girly.’ It took a great deal of effort to do that and I was often tired by the time I had to go out. I couldn’t keep up with the changing fashion nor did I have much variety in my wardrobe, but what made me finally decide to stop dressing up was that it made me feel like a fraud. I was even uncomfortable in clothes. The thin material that seemed to stick to my skin often itched and I was just aware that I was wearing it. On every corner of my body I could feel the itchy suffocating material like my body was inside a vacuumed sucked bag.

I wasn’t even dressing up for myself but for other people and that didn’t feel right to me. It was just one night to dress up and hope males found me attractive and then it would be over. I saw no point in it and had better luck with guys who took me in all my emo garb.

The truth is I feel more comfortable in my variety of geeky $10 t-shirts with an opened buttoned down long sleeved check shirt (also, to avoid a skin allergy flare up) and cargo pants. Not to mention the Captain America belt. Even skinny black jeans become uncomfortable to wear, though I still force myself into them whenever I go see live bands. As for shoes you can’t beat a pair of Macbeth Elliots. I’ve been wearing them for over ten years. I tried another type but it just didn’t work out.

I’ve even made it quite clear that I will not wear a dress to my sister’s wedding later this year. Instead, I have put my hand up to be the official photographer. I just so happen to have some camera equipment worth a couple of grand and 10 years experience in photography behind me. And all it’s costing me is a couple hundred dollars worth of travel insurance to avoid wearing a wasps nest for a dress. No photographer that doesn’t usually shoot weddings would offer their services for free, especially a band photographer, but I’d rather not face the day itching, fixing up my clothes and walking like a zombie or robot for most of the day. My clothes should feel like an extension of my skin. Anyway, it’s no harm to my sister because I’ve already driven most of my family crazy with my little anxiety related freak outs over travelling overseas to go to this wedding.

I had to get through a childhood of being mocked for having air force (which is awesome, by the way) short hair, striped shirts and hoodies and classic 90s blue jeans. And the latter I still like to wear. These days I get less of that and I breathe a sigh of relief for the other girls who don’t have to be teased by their peers about looking like a boy or being gay or have people seriously tell them ‘you can’t do that – that’s what boys do.’

And I know my brother and my sister in law. They are intelligent and opened minded people and I’m sure if their girls decided one day to drop princesses for pirates they’d be met with a lot of support.

 Shanti