For starters, not one other disorder comes to mind that has the staggering amount of self-diagnosis in adulthood like Asperger’s syndrome has. ADHD is a close second but people usually come to that realisation when their life is spiralling downward and they might only get diagnosed to see if this medication actually does as well as those prescribed to it for years say it does. Rarely does one hear of mild ADHD or ADHD without medication. For those that choose to be without medication it’s usually a hard road of trying to control symptoms through supplements, herbal remedies, bio-feedback, meditation, exercise and healthy eating. Not one person I’ve met has had mild ADHD that has the label applied to their name. Such is not the case with a growing number of people with Asperger’s syndrome.

I can understand the relief one feels when those issues they’ve had for most of their life begin to make sense, I’ve been there and I’ve been through the whole self-diagnosis thing but the danger with this is that the self-diagnosing never stops. If you have this one disorder then what’s stopping you from having this other one? After all, you were so right about Asperger’s so maybe you could have dyslexia, dyspraxia, NVLD, ADHD, BPD, APD, Irlen’s syndrome, etc. But it won’t stop. I was the same and had to be criticised by someone who I would not hesitate to call a sworn enemy (not a family member) that I was essentially ‘collecting’ ailments. I just got caught in a loop, so now I only really self-diagnose with something that I have a significant amount of impairment in.

When I was a child I met the criteria for selective mutism and pathological demand avoidance syndrome. I still have remnants of those disorders because I developed them so early in life and they affected everything about my life and what people thought of me, but now I don’t meet the criteria for them in the way the disorders were first thought up by a group of doctors wishing to treat them. I still get ‘shy’ around strangers if I’m not on medication. I hate the word shy being applied to me. I had severe social anxiety as a child that rendered me mute in certain environments. To be called shy is a denial of my disorder. I still have PDA too but the controlling symptoms are more about helping people get the best out of their short lives and the only negative part is that I still avoid doing some tasks if I don’t agree with them. Once agreed I will do them. It’s all on my terms. But my disorder is not so severe to be diagnosed with it. In fact, I think PDA is the most accurate form of autism for me. It’s disappointing though because if I had known I had this sooner I wouldn’t have been such a stubborn child, or maybe I’d completely deny my diagnosis – I’ll never know though the latter seems to fit just right with who I was back then.

What I’m getting on is my critique on the people with mild Asperger’s. Now I know some forms of mild Asperger’s can be impairing (I’ll discuss it in more detail soon) but there are some people who came upon the realisation that may have had Asperger’s as a child, or were diagnosed as a child but have recovered from those symptoms in such a way they hardly show anymore symptoms yet they still say they have Asperger’s. There is some notion going around the autistic community that you will always be autistic, even if you don’t show symptoms. They say this because the autistic brain is wired a different way – one the human brain is not a machine, it’s organic. Man just imitates it by the machines he makes. The autistic brain developed differently and some areas don’t communicate well enough with each other to work as effectively as the neurotypical brain. Even the autistic brain can make new connections, daily, through learning and experience, and just using it. The hard part is figuring just how it can learn. So, if a child is born with it and only shows mild symptoms by their adulthood they may show very little signs of Asperger’s. We must stop this notion that born autistic means autistic forever. The only reason why the name autistic even exists is because it’s a developmental disorder that may require supports to help an individual function better in everyday life and in school and in work.

There are people that think that previously having Asperger symptoms means that it’s still alright to go get diagnosed, and there are doctors that will still diagnose it. No one gets diagnosed with ADHD when they no longer have it. Nobody gets diagnosed with dyspraxia if they are a bit clumsy. Dyspraxia is an interruption between the brain and motor movements. Nobody gets diagnosed with mild dyslexia. I had pneumonia when I was 13 – maybe I should just go to a doctor and get diagnosed with that. And what I call learning disorder – NOS. I had my treatment for my learning disorders. I used to need help with reading and writing and math. Now I can handle all three, math to a lesser extent but get some medication in me and I can get a clearer picture of it.

You see what I’m getting at? Then there are those people with Asperger’s that get these crazy ideas like being the next step of evolution. I’ll warn you you have some competition; dyslexics and people with ADHD come to mind. In fact, most people with neurological disorders or even the blind adopt a superior form of thinking about themselves and then come to the decision that there’s really nothing wrong with them. They don’t need to be cured. I say this to them: if what you have is just a difference and not a disorder, drop the label, don’t get any supports and then tell me that you can cope just fine. You may as well call yourself straightedge when you decide not to drink. Ha, I’m going to get it for that. Like I care. You can choose to do what you want but when you add a label it’s like you are parading it around.

It’s normal human behaviour for a group of people who feel left out of society to want to overthrow them and become the dominant power. This is true for many medical disorder communities. One, it makes people feel better about themselves but then they completely lose sight with reality. People don’t say you have a disorder to round you up like cattle and cage you off, they want to help you get the best out of life.

Asperger’s is a disorder and can be really impairing, confusing and depressing for those with it. The main symptom should be a lack of communication which involves little speech (i.e unwillingness to speak) to impulsive speech and a lack of knowledge about the social rules; a poor theory of mind which is like putting yourself into other people’s shoes; a poor ability to read body language and tone of voice; and your own lack of body language: looking at people, moving your hands when you speak, flexibility with your tone of voice. It all differs from individual to individual but this for me is that most significant impairment in Asperger’s.

Some people with Asperger’s have a learning disability and some don’t, in fact some excel in verbal skills but suffer in communication skills. Some can speak early and reach all their milestones but have an inability in other areas which significantly affects their life, their emotional development.

Other symptoms include an aversion to change, need for routines or repetitive behaviour, varying sensory issues and poor motor skills. There also may be a co-morbid disorder; a second disorder that impairs them to a degree that is separate from their Asperger’s. Some people even have difficulty learning new things and need it explained to them in a step by step way. People with Asperger’s have a great memory for factual information and a very detailed long term memory but because the frontal lobes don’t communicate effectively with the rest of the brain, short term memory which is temporarily stored there will suffer, so some things slip their minds.

They can be strong in a few areas and weak in others, either extremely creative or have a natural affinity with numbers. Rarely will you find someone that is both. Personally, I feel it’s better this way because the human brain is all about balance, when one area becomes more dominant disability may happen but more attention can be put in this one area that can turn a struggling individual socially into a mathematician or original artist or I dunno, some type of find-a-word savant? And because they tend to have an intense amount of focus on one or two subjects if they choose to make a career out of it they can really excel. Looking at a situation realistically doesn’t often occur to them (in my case, at least). It’s not always that case though and sometimes the negative symptoms outweigh these positive traits. I mean I’m a writer now but I had to overcome a reading disorder so most of my life I have been focused on more artistic pursuits.

The more mild diagnosis has escalated the diagnoses of autism. Is it any surprise that numbers have skyrocketed in the last 20 years? Maybe it’s got something to do with the MMR vaccine (I’m not touching that argument with a 100ft pole) or maybe it has something to do with the fact that there are 7 billion people now populating this blue/green planet of ours. The autistic spectrum has been broadened and doctors believe that the line between autistic and neurotypical has been blurred. By 2013 the autistic spectrum will be merged into autistic disorder and be judged on severity levels. Most people with Asperger’s will be level 1’s and they need not fear because it’s not like they have to be re-evaluated – only people seeking a diagnosis or without a diagnosis will be effected.

I hear parents worrying about what will happen to their children once the change happens. One, it will take many years for Asperger’s to completely disappear and two, did they actually need all that support? Maybe they need some support but paying some private therapist a whole stack of cash – that’s always seemed kind of iffy to me. I had no IEP, no special schools, no occupational therapist and there are many people like me that are the same. I know you want the best for your child but I think all the treatments and support is going a bit too far. It’s also making the child feel like something is wrong with them. You’re probably offended by now but all I am saying that if your child needs help you need to be the one helping them. Save your money, stop wasting time on diets not proven by credible scientific research, and just enjoy them for who they are. Remedial classes and social education is one thing but sometimes I think it’s gone too far. If your child has four diagnoses to their name and are starting a cocktail of medication, you need to start thinking is this best for your child. Medication can do worse than good, permanently. I will only stay on one form of medication and never mix it with anything. I will not take anti-anxiety medication, anti-depressants, not even anti-epileptics.

I hope I didn’t offend you I’m just adamant that some children don’t need the extra support.

If you think you may have Asperger’s syndrome but have managed to get through life without a diagnosis: you work, have a family, can have relationships or may be able to do small talk for a little while; you may just want to keep reading.

I have been studying certain Asperger individuals carefully over the years, from those seeking a diagnosis to their life after it. A diagnosis can change you. The good part is you might be more open minded to people with a disability, not be so quick to judge crying children in a supermarket and it gets you to read a whole lot. The negative part is that you might become depressed thinking that you’ll always be this way. You might become proud and think you’re better than people without autism, definitely those that used to pick on you. The problem with this is you might think everyone who isn’t autistic is like that. You may think your symptoms are getting worse, and this is different from regression; regression involves brain damage – what I’m talking about here is being influenced by other people on the spectrum to think that you may start showing symptoms after you read about others having them. It is possible to mimic autistic behaviour when you hang around people too. You get caught up in arguments emotionally driven and heated that the rest of the world outside of the community barely thinks about, and most of the time it’s triggered by misinterpreting sarcasm or not admitting you were in the wrong – and the spiral continues. You may feel yourself so superior for having Asperger’s that you try to distance yourself from the severe end of the spectrum.

This diagnosis will change more than just the way you look at yourself. Now for me I’m into the community and write this blog because I want share with people and get them to get a clearer understanding of what it’s like being me and I participate in the forum to be with like-minds and then rationally call them out when they become too proud, pick apart the diagnostic criteria too much or when I get in a situation that I can’t see an answer to. I needed to be diagnosed though. I was so unaware of my social issues and my basic skills issues and I didn’t know why I couldn’t get a job. It saved me from severe social anxiety and worrying about never having another relationship. I’ve gone through the five (or fifty-five) steps of mourning and now I’m just really positive about making more developments. I’m on disability, have extreme sensory issues that can disorientate me and give me migraines. I have something that could be classed seizures but I’m unsure. It could just be hypoglycaemia which no one will diagnose me with even if it gets to a critical condition. My medication helps me socialise and while on it I can work on social skills. I don’t like to socialise a whole lot, I need lists to help me function, I need routine and every special interest I have serves as research for my book. Fact is, I’m still autistic. Maybe when I actually work and get a social life that lasts for longer than a few hours a month I’ll drop the label. For now I need it – do you?

A plus side to this post is that I’ll probably get a lot of comments. Backlash, mostly, but comments nonetheless. I hope you can see what I’m doing here: reclaiming autism as a disorder. Enough of this it’s just a different way of thinking or calling it a ‘condition.’ I’m not a nervous 10 year old with Asperger’s that must be reassured he/she has nothing wrong with them. I know I have a disorder which limits me but at the same time I can focus on my strengths which may or may not necessarily be from the same said disorder.

Note: I have no quarrel with people that self-diagnose, only those too mild to be diagnosed with a developmental disorder. Autism is not a gift. We are not all savants. We have a disorder that we need to learn to overcome. We have strengths, yes, but those will always be with us as long as we choose to stick with them. We are most certainly not the next step in evolution; such thinking is arrogant.

This is me.

Updated: 29/01/2012

I’m taking a break from writing my science fiction novel which I’ve been spending so much time on I have to force myself to take a break, so I can recharge my story telling batteries, so to speak. I’ve decided to take this break from writing to describe to you just what science fiction means to me and how it has helped me as an autistic gain a much better understanding of human emotions and behaviour. Yeah, that’s right – I’m going to spend my break from writing by writing another six-page blog. I just can’t stop because my head is always spinning with these thoughts and ideas and if I don’t write it all down I might just go mad.

I’ve recently gone back to Gate World forums, a Stargate fan community. At first I found it overwhelming by the different way I interpreted the show to other fans. I’m very literal minded and I don’t tend to talk about the show like it’s a real thing. Maybe other people enjoy talking about it that way but me…eh. As a writer I don’t just enjoy science fiction I break apart every part of it and analyse it and through that develop ideas for my own. I’m pretty good at telling when a story could be better or when it’s just so amazing I can’t get enough of it. When the actors are bad or the dialogue is bad I struggle to keep watching, and then I try to avoid imitating that in my writing.

I like Gate World now, once I consciously told myself that the fans are doing something their way and I do things my way and I’ve tried to hold back getting into little Rodney McKay-ish disputes with them over it, and seeing how my avatar is of the good doctor and my ability for mimicking accents and personalities (I’ll explain this in more detail later) that’s a very difficult thing to overcome.

I want to start right at the beginning though, from the notion in my childhood that science fiction was the most uncool subject you could ever get into to finally allowing myself to be exposed to the epitome of all science fiction, Star Trek.

My older siblings made it quite clear that science fiction was for nerds despite the fact that my sister and I became fans of SeaQuest. What made that show so different? Was it the talking dolphin or was it the fact that we both had a crush on Jonathan Brandis? It was most obviously a science fiction show, unlike LOST which though it is science fiction doesn’t always seem like it. I call it ‘accessible science fiction’ which is all around Hollywood now. They take something that looks like a regular old movie and put in a few science fiction themes and make sure the actors are hot and in their 20’s. I sometimes call this ‘cut and paste science fiction.’ Wow, I really didn’t like Skyline, huh? And I am Number Four, eugh! I’m sorry but I love my science fiction that sounds like it’s been written by a physics professor – take all that science out and I will find it hard to pay attention.

Even though both science fiction and fantasy were considered taboos my sister and I got into a lot of fantasy. We loved Lord of the Rings and Harry Potter. Naturally I got way too obsessed and ‘serious’ about it. Fantasy has always done better than science fiction for reasons I can’t understand. All you need to do is put in some facts and actual science and fantasy is turned into science fiction. Is it because the world is made up mostly of empathisers than systemisers? That’s why I love Philip Pullman and his trilogy His Dark Materials. Actually, he was the very man that influenced me to learn more about science and is my primary inspiration to write science fiction.

When I was younger comprehending movies and TV shows was almost impossible. When asked to give someone the gist about what was happening in a movie I’d just tell people to read the back of the cover and then be angry or sulky when they would push me to just tell them. I never really knew what happened in movies especially when I first saw Stargate when I was eight or nine but because I loved dogs I took one look at the jackal headed Jaffa and was in love. I remember writing Anubis everywhere around the house; under the top bunk bed, under the table, my bedroom walls, etc. I started writing it backwards and renamed myself ‘Sibuna.’ I’m autistic, ok – I’m weird. I once renamed myself Barnabas. Please get that Bible away from that child.

Stargate remained a favourite movie of mine for years even if I never watched the series. Regretting that now, obviously. Once again the decision was made after hearing a remark from one of my siblings.

I should speed things along. The first science fiction TV show I got into was the new series of Doctor Who the very night after seeing Christopher Eccleston play Jesus in a movie. Doctor Who was always hard for me to watch being a child in the 90’s when special effects were just starting to get better, and we had colour for years and years since I was born, so watching something in black and white was like trying to keep me sitting still in church. I could watch Doctor Who now because of the colour, even the colour schemes and the music and maybe because it was made for my generation’s attention span (note: I didn’t say my attention span).

No. 11 has a new addition to his wardrobe. Yes, no.6 is holding a lightsaber.

I didn’t get really into Doctor Who until the second series and even then I kind of lost interest. I’m not sure when it exactly hit for me that this show was amazing and I wanted to know every possible thing about it but when that finally did happen that’s exactly what I thought, and exactly what I did. I really wanted to know the complete history every time they mentioned something that happened in an old episode. So, I read a whole reference guide in a week and decided to write my own fan fiction, which is linked to this blog so if you want to witness my insanity, go right ahead.

My love of Doctor Who is mainly because of the head writer (back in those days) Russell T Davies. I literally for the first time saw the pain in a character’s face and felt saddened by it. Actually pretty damn over emotional, as I have poor control over them usually. I now relate all emotional stories in Doctor Who, Torchwood and Sarah Jane Adventures to Russell T Davies or at least know he had some input in them. Oh and by the way he inspired me to become a science fiction writer, more than Philip Pullman made me want to be one. I usually describe Russell T Davies emotional style of writing as “not only does he tug at heart strings, he pulls them right out.” Maybe it’s my over emotionality that makes me see his writing that way. But he taught me how to understand human behaviour by possibly over doing the emotions – it may seem that way to people that don’t need any help at understanding emotions – I don’t know.

I was inspired by Stephen Moffat too (new head writer of Doctor Who) mainly to put in twists and then suddenly make everyone’s heads explode by introducing something completely random out of completely nowhere and still making it all fit into the story. Some of the twists do get kind of repetitive though. In the early episodes they were brilliant but I’m kind of tired of them now.

When I was writing my Doctor Who fan fiction I bought as many of the adventure books as possible and studied every word, just so I could remember the structure. Then I started to learn not all authors write the same and I had to stick with one style. I wrote it all so fast but in a lot of detail. The final book was written in twenty-one days and is twenty chapters long. Needless to say I didn’t exactly have a social life which has never really been much of a concern to me.

Then I started to get into Stargate and to help my writing, Star Trek – now I was definitely into science fiction. I was so obsessed (in autism we call it having a special interest) that I didn’t realise other people didn’t like it as much and was very confused to as why they would hate it. How could they hate it? All that information about warp cores and impulse drives and replicators – I loved it! I admit though I had to be medicated to understand some of the information early on though. These days I don’t need to be though I do need it for other such issues.

I even had a routine to watch Star Trek: the Next Generation every week night at 6:30pm on SciTV Australia. And on the weekends my Star Trek viewing started at early as 8am and because there was a channel showing shows 2 hours later, and then they showed it all again from 7:30pm. I can’t follow this routine any more and for a while I was deeply upset about it, so I replaced it with The 4400, Caprica and Stargate Universe and other science fiction shows I have easy access to.

But back to Stargate. Stargate was my whole world for six months. Now, while not as long as some people it was more about the intensity and getting stuck in that world and refusing to come out of it. I would talk about it constantly, read about it constantly, watch up to six episodes a day (thanks to Scifi TV Australia – on any given part of the day, every day except Saturdays it would be on) and think about it constantly. I started to see the Atlantis crew everywhere (imaginatively, not hallucinatory) and the first American band I saw I thought silently to myself ‘they’d make good SG officers.’ I’m Australian so I don’t get to hear many American accents in real life.

Then I began to mimic Dr. Daniel Jackson’s accent and I still find myself talking with a Canadian dialect. I made myself a Stargate army jacket and even some clothes I wear make me feel like I’m in that world. Clothing is like my own skin, essentially, and it becomes a part of my own personality, made up of characters from TV shows and movies. I went through the same thing with Doctor Who, even mimicked Doctor’s 3, 4, 6, 10 and 11. And dressed like them.

I didn’t just mimic Dr. Jackson though. I mimicked a whole bunch of characters, wasn’t fond of the Teal’c accent and got into many arguments over taking on Dr. McKay’s personality which is currently helping me write this blog. Having an accent of a character in my head helps me read and write.

I’ll give you a crash course in what I think is going on in my brain. There are these things called mirror neurons where neurotypical people (non-autistic) mirror the actions, expressions, maybe tone of voice of the people they are talking to. Autistic people who have difficulty communicating and bonding with people take on the accent and mannerisms and even dress style of their favourite characters and unconsciously use this to help them with social skills, but in some cases, it’s more intense and constant than what NT peeps go through.

We can’t for some reason communicate our true feelings effectively or show empathy (not have but show – well, it depends how severe our symptoms of theory of mind are). It may have something to do with the Intense World Theory. This crash course will take about 20 hours! But I’ll happily direct anyone interested to a technified interview my friend did with the researchers.

The world to me is a chaotic place, I’m talking a café is a chaotic place, a freaking bookshop. There is so much sensory information being experienced by me at once that a non-autistic brain can just filter out. Because of all this I see social situations just speed right past me and I never get that opportunity to detect and compute what the emotions of a person means, until much much later. I also still can’t read body language to save myself and this makes writing about facial expressions very difficult. This Star Trek book I’m reading now is kind of helping. I also can’t show empathy at that time though I have great understanding of it now. But when watching a movie or TV show with structured words, organised scenes and the main focus being on the main cast it is easier to connect to their situation. I even learned about the importance of teamwork by watching Stargate Universe.

Actually, it was Stargate Universe that affected me the most. When I watch it I’m not just watching another sci-fi show. I feel like I’m on Destiny (the ship both military and civilian personnel from Icarus base wound up on when fleeing an attack from the Lucian Alliance – the whole series is basically about them trying to survive on this ship while working out how to get home). I don’t even say “I’m going to watch SGU” I say “I’m going back to Destiny.” Even when I’m not watching it it affects how I see things. When I’m nearing the end up a bottle of water I think about how scarce water is on the ship. Since I’ve only recently moved out and live semi-independently with my sister food does feel like it is scarce so when I’m hungry but can only find little bits around the house like stale chocolate biscuits I just think they would love to be able to eat this on Destiny. When I eat fruit especially I’m reminded of being on Destiny.

I originally started to watch it a lot because I was stressed out and I used it to escape. Now I watch it to be with those characters, to experience every food shortage or alien attack or incursion by the Lucian Alliance, which is what I have to look forward to tonight. Yes, as a part of my set in stone routine I must watch SGU from 8pm to about 10pm.

It wasn’t just about feeling like I was on the ship. I felt closer to the characters as I began to unravel the mystery that is human emotions and behaviour. I felt their struggles, I eventually understood why they chose to say and do what they did, instead of being honest. I didn’t always agree with it. I used to hate watching shows where people would rather lie than be honest but I think I’ve begun to understand it. Not that I’d ever in a million years do it. Even if I wanted to lie my body language is telling the truth so there’s really no point. When I lie I feel guilty to so I try just my best not to or give very vague details. Sometimes I just wish people were more honest.

A very inaccurate Stargate, by me.

When Stargate Universe was cancelled I just stopped, I literally lay on the couch and didn’t move or think or have any type of emotion running through me. That happens a lot to me after change that I can’t control. In autism we call them shutdowns. It took weeks and weeks for me to actually realise that Stargate Universe was gone, as was Atlantis and the SG1 movie and the games. I think I was about to have a nervous breakdown when I found out the games were cancelled when they were so close to being finished.

I don’t know how it is for people without autism. I hate calling you guys NT’s. We just say it because we are so different and when it’s denied it’s like you are denying our issues, most of which you don’t experience. Anyway, I mean no disrespect.

Like I’ve said previously I don’t just enjoy science fiction I study it. Science fiction is my life, my life’s work. Seriously, in ten years I hope to have all my five books published. When life gets too tough I use it to escape. Once I was in my little I-don’t-want-to-socialise mood I escaped through watching the first science fiction movie I could find, Zathura. It was great because it had a young cast and it brought me back to a time where people wouldn’t pressure me to socialise because back then they never expected it of me. One of the reasons I write science fiction is because I want to have an adventure. I came from a small town where not a lot went on, but still, even going to concerts and clubs wasn’t enough for me. I wanted a true science fiction adventure, an ‘oh-my-God-the-Earth-is-going-be-destoryed-in-10-seconds-how-do-we-save-it?’ type of adventure. And the most important part about that is you forget about your own trivial issues or sibling rivalry when you’re fighting to survive, to save your own planet. And it’s important for me because when I get stressed out I have a meltdown or I just stop working (literally, I short circuit; I lose muscle tone, speech, emotions) and I want to know what it would be like for me if I could survive in that situation.

Probably the best piece of sci-fi merch I own, Dr. McCoy

This is why I feel insulted when people tell me they won’t read my book because it’s science fiction. What is so wrong with science fiction? Does it make you feel inferior that you don’t understand half of the science behind it? Is such a taboo in popular circles to actually have some knowledge about the laws of nature? Why do people hate science anyway? It makes no sense to me. Science keeps me going. I suppose I’m the same way about math. I can do it on medication but it doesn’t stick with me unless I use it every day. I do kind of like the patterns in numbers but that’s it.

Oh, by the way, I have Eli Wallace in my head, helping me write.

I just wish people kept more of an open mind. Science fiction is beautiful. It takes ordinary people and puts everything we know about the human race to the test. Do human beings really have humanity? It deals with racism in a way no non-sci-fi fan would ever think possible. It deals with greed and survival which usually go hand in hand. There’s no good or evil, just different perspectives and an instinct of survival. It even deals with the more trivial matters that happen amongst friends and families and business partners, revealing that the human race will always be human, with all its flaws. Star Trek especially makes you see aliens as more than monsters hell bent on destroying Earth for no reason at all – they’re people too going through the same issues as we do. Hell, there are probably autistic aliens too which is something my series will deal with.

I'm just putting this here, because, well...insanity.

It was Torchwood: Miracle Day that made me see death in a whole other light. I know a lot of people were disappointed by that series but moving to the show to America was a good move. It’s full of action and so much is happening (keeps the ADHD side of me focused on it) and all the issues it deals with just made me think about it for hours later. I was never trying to get through a week so fast in anticipation for the next episode of a series since LOST. But this series was 20 times better. I still need to get it on DVD. I had this thing about needing to watch it live because when it aired in the States at the same time it aired in Australia, so if someone was watching TV at that time, and it didn’t even matter if I could record it and watch it later – I had to watch it then or I was going make a very loud and angry deal about it. My mother must be so relieved that she doesn’t have to put up with that anymore, because I have since moved.

Torchwood: Miracle Day didn’t just make me understand human emotions more but made me aware of how selfish and how despicable we can really be. I think it was John Simm as the Master (from Doctor Who) that said: “The Human race, the greatest monsters of them all.” This past year I have found out so much about how deep it goes but Miracle Day reminded me that humans are just not evil in science fiction. It was probably why I was more affected by some of the plots in Miracle Day compared to other people. I first realised it when I at first wasn’t affected by people who were being classed as dead but were still alive (people stopped dying in the series) then it just hit me and reminded me how I had to change my perceptions.  Throughout history and even sometimes now the disabled are treated as less than human and those who have read Area 51 by Annie Jacobsen know all about the Roswell Hoax and what happened after. How’s that for vague? I don’t want my door kicked in. They’re were lots of shocking story lines in Miracle Day and I can’t understand how people say this series was boring or disappointing. It makes me wonder about their humanity. If you are unaffected by people being classed as category 1 and then burned alive, you definitely have a lack of empathy.

Now I have a few friends into science fiction not with as much intensity as me though and I dub my new home ‘the Sci-fi house’. There’s also a lot of jazz/art going around but for the first time I feel like I can just watch it and talk about it without making people bored or getting some smug remark about being a nerd. I know I’m a nerd; I don’t need to be reminded about it. Nerds are cool. Everything I was told in my childhood turned out to be a lie. Everything got better for me once I got into science and science fiction. The amount of knowledge I’ve acquired in just three years compared to my twenty-six years of life is, unbelievable. I have a lot more self-confidence too. And if I was to ever get really upset and lonely I’ll just put on episode 200 of Stargate: SG1. You know what I’m talking about. It’s my remedy for the blues.

OK, now it’s time for my real writing break because Caprica, The 4400 and Stargate Universe can’t watch themselves.

Here’s more about my take on Autism and Mirror Neurons:

http://www.autismhwy.com/articledetails.php?id=74

And here is the very long and technical WrongPlanet.net interview with the creators of The Intense World Syndrome (helluvaread):

http://www.wrongplanet.net/article419.html

I will still post here but about more advocacy issues or ones that don’t relate to me living in Sydney. Or ones over six pages long.

Check it out: www.autisticblogger.com

In other news I’m thinking about writing screen plays to show people how varied the autistic spectrum is, and also to explain autistic issues from the perspective of an autistic. And also, to show you how varied my stories can become. Some are psychological, some are about spies, there’s one with sci-fi/fantasy/possibly schizophrenia themes and one approaches savantism in no way seen before. You get to see the development of a savant talent and not just a child born with the ability to paint like Van Gough. And all the characters are of different ages, live in different locations and have symptoms all across the autistic spectrum, as well as different strengths. One is actually really good at math.

I call it ‘the second regression’ after autistic regression that happens for some of us between the ages of fifteen and thirty months after we typically develop as babies, may have some speech and desire for attention but then we quickly or slowly lose those skills. Many parents think that this is because of the MMR vaccine because it is usually given to their child around this time and I’m not here to argue with that.

This is a very sensitive subject and one not known by parents of autistic children or doctors, but it must be known because when it happens to an autistic person hardly anyone would believe them because things they were capable of doing they no longer are, or struggle with it, and it makes one feel very lonely when someone thinks you are capable of something when you’re not.

The second regression affects to my knowledge only those who are high functioning (as much as some people with ASD find that word insulting you’re just going to have to bear with me because I can’t find another word in which to describe it – you rather I called it ‘mild autism’?) or have awareness and have some level of independence because this regression happens commonly when an autistic person pushes themselves even though they are well aware of their limits into a much more stressful territory. The stress may be so severe it triggers seizures or what we on the spectrum call shutdowns, which is a temporary mental and physical shutdown; physical usually precedes mental or may be different in each person that goes through the ordeal. The regression happens when these shutdowns happen frequently over weeks or months.

This is my own uncensored account of my second regression:

Aged 24, diagnosed 6 months prior with ADHD and given Ritalin to decrease some of those symptoms. I started on 5mg and slowly went up to about 20mg a day and on doctor’s orders went up to 30mg a day; the legal adult limit in Australia. My weight had dramatically dropped and I was finding it hard to eat. I used to flap my hands to help me eat. It worked to a point but I was still losing weight. I got right down to 49kg (108lbs) and developed a type of hypoglycaemia where I would grow weak and dizzy if I didn’t eat every three or so hours. This by outsiders was seen as me needing to eat at certain times as a part of my routine and I almost believed it myself, until I almost fainted on my desk when my half made sandwich was on the kitchen counter when I was rushed from the kitchen while my mum dealt with someone doing some type of renovations or something. The details are a bit fuzzy.

One of my most crippling symptoms has been my fear of change. Written down it sounds almost ridiculous but I know just what it used to do to me. I would snap, sometimes explode, panic and become immensely worried as I would create every possible doomsday scenario in my mind of what could happen. As a child my fear of change was so severe I would have a meltdown, back then seen as a tantrum. It could have been slight changes in routine to dramatic changes like going to a place I’ve never been to before. I’ve written an article about the levels of change and will leave a link at the bottom of this blog.

Being aware of this fear of going to a new area made me very reluctant if not oppositional to go to new areas, like a town I’ve never been to before. Once I was offered to photograph a festival on the border of NSW and Queensland. Naturally I panicked and said I wouldn’t go and was yelled at by my mum for not trying new things. I had tried to overcome this fear; I even looked up bus routes and hotels to stay at when planning to go to another show in another town but decided to not go. I was a self-employed band photographer being asked by various bands to take photos of them in towns I’ve never heard of before. I did go when the location wasn’t too far away. Sometimes I did so without planning how to get back and once my brother Vishnu had to drive all the way to Camden to pick me up with my very ill dad in the car.

I was reluctant to go to more shows too since my over exposure to strobe lights resulted in the biggest public meltdown I’ve ever had since I was about eight years old.

My friends and I love this band called You Am I and always try our hardest to see them whenever and wherever they play. There is usually a big gap in between the time we see them play and I think that was a reason why I pushed myself to go see them in Castle Hill. I was so worried about going that I looked for pictures of the venue online and even looked at the route from Wollongong to Castle Hill.

A few weeks before the gig I was noticing for the first time my senses becoming more easily overloaded when I walked the half hour walk into town. It wasn’t anxiety, it was the opposite; I felt light headed and though people were around me it didn’t feel like it. On the actual night of the show I was stumbling around like I was drunk even though I hadn’t had any alcohol. I had barely eaten dinner because of my loss of appetite and around this time I was medicating myself into social competence. The Ritalin helped me talk more to people but for some reason didn’t work when I went to see bands live. The mixture of Ritalin and alcohol (a most potent mix, one that I strongly recommend against) was my form of self-medication to help me socialise. It was a foolish decision to make, what was even more foolish is that I took up to 30mg that night.

I was aware that strobe lights would lead to another meltdown so I planned to leave after three songs; the usual required length of time media photographers are given to take photos and the rule only applied to me by You Am I’s road manager, regardless of venue size. And after three songs I put away the camera and went to the back of the venue, where I still had sensory overload and became very hyperactive.

Then we got to see the band backstage which I was very nervous about. I have no idea why because I’ve seen them before. I was just very tired and hungry and sober and for the rest of the night gave vague replies, couldn’t participate in a conversation and the only thing I did say ended up embarrassing me.

The next day at the train station I thought I saw waves in sky. This was my first visual hallucination. When I returned home I wanted to work on the photos immediately but I felt tired so I took Ritalin, fish oil and a multi vitamin but it wasn’t enough so I decided to have a quick lie down on my bed, but then I got stuck in a loop of the same negative thought about the very thing that embarrassed me. I barely had any feeling for it anymore but it still looped in my head, and then I couldn’t move; only my legged jerked once or twice and I couldn’t speak. I lost a good hour too though I didn’t feel the time pass. When I finally could move I went to the mirror and saw that my right eye was bulging and that side of my face was drooping.

This was the beginning of my seizures and soon was accompanied by more jerking movements, automatisms which is like repetitively doing an action; like autistic stimming but very hard to control, and a partial paralysis called Todd’s paralysis; the fatigue that follows a seizure. Soon I began smelling things and seeing things and hearing things, though what I heard was short an incomprehensible and sometimes what I saw lasted only a second and sometimes it would be more vivid and I could actually feel it, as one feels things just by looking at it. This went on every day for weeks until I realised it could be Ritalin that was doing it. My appetite loss was getting out of hand too. I became very hungry to the point of feeling ill and weak but I still couldn’t eat, and once at my niece’s first birthday party in which it was a sweltering hot day and my glasses frames had just broken and I felt weak and knew I’d have a seizure at any moment, I had very severe partial seizures and a temporal lobe episode/ meltdown but was denied when I came clean about what was happening, even when I said my symptoms were getting worse. Not only did my mum not believe me but my doctor doubted Ritalin could be the culprit. I soon learned to keep my mouth shut and hide the seizures. I started to have migraines after them too (never before did I even know what a migraine felt like) and I was at least believed about that. The seizures continued throughout Christmas 2010where I still kept them hidden but was thinking about them constantly and after getting foolishly drunk with my sister and her bringing me to tears, in the morning I had a cluster of seizures. They were now tonic clonic without a loss of consciousness.

Around this time the cognitive regression was starting too. People would give me an order and I would stop still and ask ‘what do you mean by that?’ and wasn’t able to say much more. The instructions would have been easy enough to understand before but now they were confusing and I was taking words far more literally. One example is when I wanted to go into a store and my mum said I could leave my bag in the car if I like, so when it came to the point of buying something I told her my purse was in the car, and she laughed and said ‘why did you do that for?’ which I replied ‘you told me to put my bag in the car.’

I’ve made many literal interpretations like that ever since. Another thing that happened was I was too scared to go onto my little half hour walks into town, when I finally did I noticed my hand would shake as soon as I got into a public area and I became sensory overloaded. For a long time I started having visual distortions around town which still happens to this day but is so common now that it barely concerns me. They’re now closer to vivid hallucinations like ever before. Shopping centres regularly turn into elaborate scenes from futuristic sci-fi and busy cities turn into war zones, even my own street turns into a stampede of ravenous T-Rex’s.

I began to struggle to hold back meltdowns and would have them over things as simple as the fact it was raining. I started to blame people for not realising that something was a part of my routine which had to be followed if I wasn’t to have another meltdown or just stop and sit and not know what to do next. I began to lose my spatial ability and though every passing car that passed the car I was in would collide with it and my timing to cross the road was poor. I could no longer judge how long it would take a car to pass and me to cross. I developed a fear of crossing roads and demanded anyone happening to walk with me to cross at pedestrian crossings.

Needless to say I didn’t see any live bands during this time. Because of the increase in sensory sensitivity I communicated less to people because I would lose the ability to even look at them so quickly. Sitting in cafes was an absolute nightmare which I eventually banned myself from. I got really angry once that I didn’t receive my meal at twelve o’clock, but most of the time it was the ear splitting background noise that set me off. In supermarkets I would become dizzy, hyperactive or try my hardest to not have a meltdown I would have a shutdown and regress temporarily in walking and speech while still in the supermarket.

My social withdrawal meant a loss in the social skills I developed in those two years since I was diagnosed. I had to learn it all again from social niceties to remembering to not be so blunt to trying to decode tone of voice to reciting what various body languages meant, but I was never good at remembering those.

The seizures continued even without medication and my memory was becoming poorer and it was harder to stay organised. I wasn’t writing at all because I barely got a page out when attempting to write my novel without medication. I decided to go back on medication on the lowest possible dose and it works for me. I get three-four hours of increased focus and all the other pleasures that come from this drug and I only take it twice a day. Sometimes I try 5mg more and some days I struggle to take the first 5mg dose if it’s close to a holiday or I’m around a lot of people (I forget, basically). It does help with social skills but even on the low dose I get side effects, but it also decreases sensory issues. I can just tell when I walk down the street the difference in focus. The lack of focus actually saves me from much social anxiety and migraines. If I wasn’t on Ritalin I wouldn’t be able to write my novel (and therefore have very little to live for) and would have very poor reading comprehension.

My third regression happened after I moved to Sydney. Not only did I have constant meltdowns about moving things from boxes to not knowing what to do with the empty boxes to not having my clothes or most of my stuff to social anxiety in the streets (as soon as I left the front gate) and struggling to create a new routine, but because I was so busy I kept having breakdowns (kind of a combined meltdown-shutdown) and soon I was becoming so burned out I couldn’t make myself food and was too sacred to buy groceries and some days would panic over not knowing what meal to make. And then the criticisms came: you’re not exercising/ eaten healthy/ socialising enough. And then came more cognitive regression and although people around me didn’t like using diagnostic labels they sure treated me like someone who had one. In fact, it was all repeating again; the very simple instructions, the nurturing, the speaking for me. I knew I had to take a very long break from all of this otherwise I’d get worse.

Once again Ritalin was the culprit of the anxiety and migraines. I found that out when I went grocery shopping on Saturday and was fine. My senses were extremely overloaded that I used the street crossing as an aide to help me walk across the road without getting hit by a car, but I had less anxiety…and focus. It was like watching a video where the cameraman quickly moved the camera from side to side, up and down, and zooms right in on street signs and display windows.

There are many stories like mine where someone with autism who was once very capable had lost most of those skills because they pushed themselves so much or were pushed by other people. I didn’t want to share this with parents who spend all that time and money to help their children develop skills. I don’t want parents to stop helping their autistic children develop new skills but I want them and doctors and other people who aren’t aware to know that just because someone with autism develops more skills it doesn’t mean they won’t lose them. Not everyone does lose them and some that lose them don’t completely regress and may recover, though some may be unlucky; I know someone who now has severe communication problems because of the regression.

For an adult it’s harder to go through the regression because so many people have seen you functioning at a level you may now struggle to reach. For those who are parents and work it must be more devastating because of the level of responsibility they have.

It can be avoidable. Autistic people must know their limits and not push themselves too hard. They must pace themselves and not work until exhaustion. The consequences can be life changing and not for the better and the recovery process is long and some skills may be gone for good. The health issues I have are there for good, the higher mental functions can be worked on. My increased fear and paranoia that I haven’t even touched on may be harder to overcome (demons in room at night/ fear of everything at night), even the anger outbursts have become harder to control. I’ve recovered up to a point where I say ‘This is fine. I may never get those skills back and I’m fine with that. I am healthy and have been given a second chance after my second and third regressions.’ May there never be a fourth.

I know there are some people who have more severe autism than me and some may never recover, but I ask you this: imagine if they could speak and take care of their basic needs. Now imagine they lost all of that obvious stimming behaviour and started to socialise with people more and it got harder and harder to know they were autistic by what behaviour they had.  Socialising isn’t all fun and games; it’s a brutal game of popularity and conformity. If you are slightly out of the mould of someone’s perception as a ‘normal person’ you will get out casted, ridiculed or worse kept in the group but were teased constantly.  And most of us can not pick up on sarcasm and some of us get really offended over playful teasing. With an increased awareness at knowing how different you are comes anxiety and with this awareness and acquired skills comes more responsibility but you still have sensory issues, fear of change, need for routine, explosive meltdowns and have all your repetitive behaviour seen as weird by non-autistic people or people that don’t have an open mind to it. You have people doubting your impairments or even your diagnosis so you try to keep it to yourself but it all becomes so overwhelming. Depression can be developed or other personality disorders. You get judged by employers on your social skills and not the skills they actually require and you’ll be unemployed for a long time if you don’t have experience in IT, especially programming.

And you think high functioning means we have it easier? No. No one with autism, no matter what end of the spectrum they’re on, have it easier. There’s always going to be difficulties in different ways that feel pretty damn severe to those experiencing them.

A person that is high functioning is not always. For some of us we have a small window open where we have the mental ability and physical energy and drive to be organised, work on social skills and do very basic everyday things but we get drained of this early and if we don’t allow ourselves some time for rest then our functioning will become lower, but we have to keep it to ourselves because we’re not supposed to have those types of severe symptoms. I’ve been partially paralysed more times than I can count on both fingers and toes. I could probably count on both fingers the many times I’ve lost speech. My cognitive functioning has been slowed down so many times and so severely that I’ve barely been able to think one coherent sentence when it happens. I lose my ability to write only after a few hours of writing and my thinking slows down too.

One difference between severe autism and high functioning autism is the latter have to deal with this alone because people, no matter how much they want to help, just don’t understand temporary and long term regression and how it can happen to someone with HFA or Asperger’s or even PDD who one day is functioning at an almost NT level, to not being able to look at you or move their arms or speak or even feel emotions, a few hours later.

Parents with children on the severe end of the spectrum: I really don’t wish to offend. I can empathise with your struggles but just don’t think because it doesn’t say ‘severe’ or even ‘autistic disorder’ on my medical file it doesn’t mean that I don’t struggle as much, it also doesn’t mean that someone who has milder symptoms than me struggles any less. It took me a very long time to understand that. I too tire of people focusing on the positive side of autism and the media’s focus on those who are gifted. This disorder has halted my development so much, especially because when I was growing up hardly anyone got diagnosed with high functioning autism, and I needed to be diagnosed with something because I felt people had no hope in me and I was not verbally gifted or a little professor. I was just as aloof and distant as someone with classic autism. In the three years since my diagnosis I made a lot of improvements, lost some skills, gained them back and now live almost independently. They are many challenges that still lie ahead, like going to new areas on my own and getting a job and travelling on a plane. In fact the latter fills me with a lot of panic.

That said I do see some strengths in my disorder. I can make routines more functional, special interests into career moves, my own story into advocacy and my attention to detail and relationship with colours into an original art style.

The autistic community is divided by disagreements over causes, accusations of ‘you’re not severe enough’ to ‘I don’t want to have anything to do with those r*****.’ We need to stop taking things so personally and just allow the abuse of other to wash over us, go away for a while if you must. Honestly, I have a disorder which triggers a need to argue (even when I agree) and find conflict and I’m pretty good at staying rational in an argument (online – offline I just stay quiet). My other disorder makes me want to be in control of a situation and be pathologically avoidant. This community needs to remember there is a full spectrum and that even within each group people can be very different. We need to band together and approach self-advocacy by not leaving anyone out and not focusing too much on positive and negative – but to have a balance between them both.

Links:

Why do Autistics Hate Change?

http://www.autismhwy.com/articledetails.php?id=77

A Health Crisis on Christmas (during regression – I kept this hidden for over a year)

http://www.addforums.com/forums/blog.php?b=2394

If you would like to add your own link about regression in autistic adults please leave the link in a comment.

The WordPress.com stats helper monkeys prepared a 2011 annual report for this blog.

Here’s an excerpt:

A New York City subway train holds 1,200 people. This blog was viewed about 7,800 times in 2011. If it were a NYC subway train, it would take about 7 trips to carry that many people.

Click here to see the complete report.

I was going to write about my progress after living in Sydney for six months but seeing how I’ve adapted to my new living situation in just under two months, that post is coming a bit earlier. Almost an exact year ago I wrote a post that was so depressing I didn’t even post it on this blog (it’s on an ADHD forum blog) and it interesting to me because this post will be the exact opposite. While it does out line some negative symptoms it is probably going to be the most positive posts I’ve written to date.

Well then, get on with it already!

Not even three months ago I would be sitting in front of a computer screen day in day out, working on another chapter of my novel and not wanting to do anything else. I didn’t care about anything else and would only leave to eat, have a toilet break and to show people I could be social so they didn’t hassle me about it and then I’d return to my room and continue to work on my chapter. All the TV shows I watched, book I read and any type of interest, interaction or object that passed through my visual window would help me to write this novel. It could all be used.

I had a set routine to live by and hated interruptions, absolutely hated when I was told ‘oh, by the way we’re going out in twenty minutes, didn’t you know?’ Every day was pretty much the same routine, the same meals at the same time and if I didn’t eat at the right time I would become snappish and panic and try to eat something little just so I know that I had. If I wanted to eat something that took a while to cook and I’d need to eat right at that very moment I would panic and melt down.

I could only handle seeing my friends at least once a month and would only tolerate socialising with people for once a week; otherwise I’d be tired, moody and snappish.

The only responsibility I had was to feed my cats in the morning and evening and put them outside when they had to go to the toilet. I didn’t have to clean up after them too often, though there were some accidents. I didn’t have to give them anti-flea solutions, worming tablets nor did I have to buy their cat food. It was far too heavy for me to carry the half hour it took to walk up hill. The walk into town doubled as a good 40-50 minute walk (both ways) so exercise was covered, though I did use a trampoline and lift weights on the weekend.

Because I didn’t have a car I didn’t do my own shopping which led to a few near meltdowns when my mum forgot to buy the White Wings Choc-chip Drizzles biscuits I loved so much. I would always have two to accompany my cup of tea at 6:30pm when I watched Star Trek: The Next Generation. I had meltdowns over my favourite shows being moved into another timeslot without being forewarned or when somebody interrupted me when I was watching said favourite TV show or when I got excited before watching the TV show and walked into the lounge room to find people watching a movie – that means I missed not only my favourite TV show but my favourite TV show after that! It would make me shut down, not get angry at anyone like I was accused of but to just slump in my seat and stare and not have no feeling left in me or have any idea what to do next.

Me and my roomie Lyra ruining another great photo moment.

Then when I moved to Sydney there were more meltdowns or breakdowns as I like to call them because they were not outbursts but more of collapsing on my bed after doing too much in a day which usually involved over socialising. I had meltdowns over unpacking my boxes and then getting rid of those boxes so they don’t clutter my room. I had no idea what to do with boxes after you unpacked them. Then I was left with some stuff in boxes, my book shelf overflowing and my clothes having to be put in plastic boxes because my drawers were not big enough (after another breakdown). I had anxiety when walking into civilisation which was not a half hours walk away but on my very front doorstop. It took me a whole week to realise this was my medication so I decided to only go out once it wore off – but could not be as it wore off as going Christmas shopping in the city when they happened proved to be fatal.

There were many things I had to adjust to, even getting used to using a straight clothesline. I didn’t like having to buy my own groceries and my insecurity came out when people commented on me not eating healthy enough food or not knowing how to budget properly – then I thought ‘to hell with them’ I have loads of money. I’m not very good at mental arithmetic and am not good at estimating how much a group of items costs; to make matters worse I’m an impulsive spender.

I decided instead of medicating my sensory issues away I would block them out with my iPod. I still eventually got sensory overload or migraines but not to the extent I did when I was on medication (the migraines, not the sensory overload). It’s impossible for me to not get sensory overload. Put on a few choice You Am I and Vines tracks and I can have a vertigo-like sensory overload. Flash a light in my face or play Mario Kart with me and…you get it. I prefer the overload and the shutdowns compared to the anxiety I used to get.

I was reluctant to socialise in what I believed was the normal rate people socialised in Sydney. I was so against going to a formal after party (actually I lived above it) I’m convinced my body had a psychosomatic reaction and I fell gravely ill. Slowly I began to attempt socialising by sitting down in the kitchen or going outside and listening to my housemates talk and meet their friends, whom I had apparently met many times before. I did use medication and alcohol to help me communicate with people at times. I soon noticed on my non-medicated weekends I was still able to socialise, though my speech and thoughts were all disordered and my memory poor.

There were a few people I didn’t like at first and thought didn’t like me but I soon warmed to them. My niece and her friends being eighteen made it easier for me to talk to them because I look around that age and feel like am too. One plus was that I wasn’t the only person into science fiction or astronomy, though I may be more obsessive about it, and soon my topics of conversation turned into discussions about Battlestar Gallactica or some celestial event that was to be happening soon and my conspiracy theory discussions were well received.

Because of my insecurity about eating healthy made me want to learn to cook more food I was constantly being given little tips here and there and even got to make my new favourite dish: a Vietnamese noodle salad. I got to make it on Christmas day but because of thinking literally I was very confused that people didn’t eat it with lettuce, or tofu, or yoghurt.

My creation.

One problem I began to notice was my failure to bond with my young niece Olivia so I decided the best way to do this was to paint her and her sister Amy a canvass with Simba and Nala from the Lion King on it. Painting was something else I wasn’t very good at but through practice over the two weeks leading up to Christmas I managed to get it done and was quite impressed with how Pride Rock turned out. Olivia loved it and Amy feeling confused wondered where her Christmas present was. Then on Boxing Day I had a second Christmas celebration and the girls were there and though I did spend the early part of the day hanging out with and talking a bit to the adults, I spent the afternoon being the official photographer of Olivia and Amy and realised my communication with Olivia was getting a bit better and she was trusting me a bit more to hold hands with me when crossing the road or helping her climb a small brick wall when she was too scared to go alone. I now need to work on my communication skills with Amy. With very young children it’s harder.

On Christmas day I showed my six year old nephew Owen how to operate the very high tech UFO gizmo I bought him. I was worried because it was for ages 8 and up and was powered by a fan, but the only person who got their finger caught in it was his father. What’s interesting is that when Owen opened up his Christmas presents and screamed when he got a Lego set and especially when he got a Mario chess set, which he hugged, he reminded of a time when I was a child when I’d wait for a specific toy all year and on Christmas day I‘d finally get it, and that was enough to remind why Christmas is so special. There’s a whole lot more like spending time with family and loved ones. I would usually argue we were being forced into when we had a whole year to give presents and share with them – but do we really? It’s good to have a day where we slowdown from our busy stressful lives and just eat, share, give and receive presents. There are so many people with autism or ADHD that complain so much about it and focus on the negative. I was behind the scenes of Christmas lunch – believe me, I know how stressful it can be. I have the most crippling sensory issues too but I’m just so used to family gatherings I’m fine with it now.

Owen, so happy to get his Mario chess set he hugged it.

Something else I found interesting was when I was living in Nowra I would only socialise for a couple of hours and then lose interest and want to go home. A few years back I did have some nasty meltdowns if I continued to socialise myself even after I felt tired and cranky so I decided a few hours a day was all I could do – and I wouldn’t do it again for at least a couple days rest; a month if I had to travel more than an hour. Only a couple of days ago I had been going to large gathering of friends and family for three days and still going down to socialise on the fourth day when guests came over. I could feel myself getting tired though and while still going through PMDD decided it was best I took some time off.

It takes more effort to exercise than just walking into town and back because town is so near – it’s both a blessing and curse. The blessing part is having a shop called Terrific Scientific a five minute walk away. There are places I can walk that take a good hour. My brother Vishnu lives in a good area for that. There’s also a park nearby and a joining town, although the road gets a bit busy. And I still have some dumbbells to lift to build up some muscles.

Buying my own groceries doesn’t bring me anywhere close to a panic attack like it did before. I can usually get a lift to the IGA or I can choose from two smaller grocery stores a few minutes’ walk from my house. On the downside I won’t be able to buy my Drizzles, although my tea routine is hardly kept these days and I barely notice it. On the plus side I can buy a Kinder Surprise.

I’m back into my Doctor Who collecting because there are plenty of places to buy books, dvds and collectibles from without needing to go online. There was in Nowra too and Wollongong but some of the items are different. I also found a good shop to buy model kit paints from so I’m beginning a new hobby. I got two Russian MiGs for my birthday and I’m going to build the MiG-21 f-13 Fishbed C first and when I get up to my MiG-15 Bis I can get very specific paints and put extra detail on it. I first need all the required tools first.

Meanwhile in the city, everyone else is hanging out, getting drunk and high…

It’s a lot harder to get time to work on my novel but the story is still there in my head, all I need to do is obsess about it in my head, tell myself a little bedtime story which I view as a movie.

Around Annandale

I’m still not used to the city side of Sydney but I love my village and the little terrace house and my bedroom up all those stairs and my balcony, though it is more my cat Lyra’s balcony. I hardly have any anxiety when walking down the street except when on medication, but it’s still not nearly as severe as it was before. It’s hard to not give into the relaxing Annandale environment which makes it harder for me to stick to my routine and to-do lists but I eventually get things done on it.

I’m happier living here because my room can feel so isolated and if I want company it’s usually downstairs. Even if I want food but can’t feel bothered to make it it’s downstairs, although I do like to do my own cooking, but I hate the mess so I try to make something that I can clean up right away and doesn’t take too long. That’s why I don’t like cooking things from scratch. I’m also impatient and even though I usually follow instructions to a T I still forget about adding certain ingredients. I just like to know that I am capable of making meals from scratch. My health issues are nearly all understood too. I still don’t like talking about my seizures but to a select few people only. One day I couldn’t hold it back because the activity was so high I collapsed onto a table but then got to go to my brother’s house and watch Apple TV.

I remember it got so hard taking care of Lyra too because she’s still basically a kitten and a handful and didn’t like going outside at all. For a time I kept debating whether I should send her back to live with my mum because she had hardly anywhere to explore and I felt like she wasn’t adjusting, but I’m glad I didn’t because she’s my little roomie. She may knock down my model planes and bite them and break them and claw my straw drawers and sharpen her claws on the stairs though she knows not to – but we’re a duo and she’s become closer to me than ever before. She jumped off a balcony just to get to me one night.

Lyra

I love that there’s a dog in the house too. It took some time to bond with him – belly scratches are the way. I also love how many dogs I’ve seen since I’ve moved. I’ve made friends with a placid white dingo (and her owner – no no, she’s a really good friend) and two excitable pals Sam and Latch – and decided that Sam the Kelpie is the type of dog breed I’d go for if I had a big house and yard. I don’t mind just playing with other people’s dogs. I love how on the main street on my street dogs will be everywhere and you’re allowed to pat them. Dogs interacting with other dogs and sitting by a café table outside the café while watching people walk past with more dogs is just a way of life on this street – and I love it. There’s also a heritage vibe about this area that makes me love it even more.

Runta, the dingo I'm going to run away and join my own dingo pack with.

My social skills have improved so much that I could talk to people like I’m on medication but not on it; the only difference being my poor speech and memory and I may forget to look them in the eye and won’t be so wide-eyed and excited and stand too close to them. I’m still a little scared to go to new places, especially in the city. I can adapt to some change and don’t complain when things don’t go my way, though I may still mutter it under my breath. I haven’t got the SciFi channel anymore so my weekend Star Trek routine is broken; as is my watching-Stargate-whenever one as is my documentary and movie watching one. It’s good because I watch TV less and less and have more time for writing, reading and other hobbies.

I’m still finding out there are things they I may not be able to do on my own but in the last two months I’ve been able to prove to myself that I am able to learn and adapt to new situations, most times scary, but I made it out in the end and now I do them as a regular part of my day. Some are still tiring and stressful but I pace myself so I don’t overdo it.

After the Fall Live, Coke Live 2006

Ben Windsor (After the Fall) backstage at Coke Live 2006

One of my special interests was graphic design and because I had a brother who worked at IBM and could get my foot in the door, so to speak, I decided to study IT at TAFE College. He wanted me to eventually design my own software which I later found out was impossible because very basic programming was a nightmare for me. I would miss out key parts of the code, write code in backwards or even write it down twice or mix it all up. Programming was not for me, I was a designer, an artist.

In my last year of studying IT I lost interest in it and instead wanted to be a band photographer. The early days were very difficult for me; my parents and siblings didn’t take it too seriously compared to how they felt in the later years. I knew myself I was delaying employment by going to pubs and clubs and taking photos of many different types of bands. It never occurred to me to make a career out of it until a friend said that I took good photos that captured a memory. Still, I needed further encouragement when I didn’t feel like I could be as good as the very early days of Shot Through the Lens (I think that’s what they were called). They actually weren’t that advanced to me back then.

One little hiccup that put my photography on hold was when my dad gave away the camera he gave to me to a cousin in India. I was outraged and I demanded he buy me a new camera. To make it worse I made sure it was an expensive one. My dad and I barely talked much and in those days of me just beginning to communicate more but being unaware that we were both pretty much alike, I had no idea my behaviour was a bit pushy, rude, selfish.

My new camera was a FujiFilm S3500 because I didn’t feel ready for a DSLR yet. Soon this baby would break a month before Taste of Chaos festival or maybe it was Funeral for a Friend’s first headline show in Australia and naturally, I was freaking out about that. I didn’t actually get to take photos anyway and I had just purchased a Canon 350D (mum purchased it and slowly took the $1000 out of my bank account).

Now that I had a new camera I was eager to go to more shows. I had a cheap Tamron 28-75mm f/2.8 lens and later a Canon 50mm f/1.8. I knew a few people online who liked The Hot Lies who were on MySpace and they were friends with Trial Kennedy. It was Aaron, former bassist from Trial Kennedy, who told me to come say hi before a show and this started off my phase of making friends with bands in place of having any friends in my hometown. Through Trial Kennedy, who I had lunch with; I got to talk to my hero at the time, Dennis Lyxzen from The (international) Noise Conspiracy. I already knew Inge who used to date my sister. My friend and I had previously met the whole band by waiting on a frigid Newcastle night for them to come out (Inge would of course say: “You’re cold – cold? Australia doesn’t get cold”).

Me with Dennis Lyxzen

Me and Inge

Around this time I had met Matthew Davies from Funeral For a Friend online and was absolutely stoked (yes, I did say stoked) that he would message me. I think this was during the days when he knew few Australians. I can proudly say that I still do know the boy today even if back then I was very obsessive and star struck and all that. I decided to leave him alone for a very long time because I hated what I was doing and eventually we got to talk again when he got me a photo pass for Funeral For a Friend’s next gig, and the next year (or was it two?)

When I stopped talking to Matthew I started to correspond with Pete Wood, singer of The Hot Lies, online. My in with him was to talk about my brother and his band Irrelevant. I even got Matthew into them and it was a good name to drop when getting to know band members, because they had toured with them or played the same show or just knew about them. There was some animosity between the guitarist Josh and my brother and I only met Josh once and never said much to him. I’m very loyal to my family and friends, more so my family.

Matthew Davies Kreye from Funeral For a Friend.

Mikey and Pixie, The Hot Lies

I got to know the other guitarist (more lead) Benji or Pixie well and when Mikey joined that was when I was very friendly with The Hot Lies. Even though my friends Erica and I went to so many of their shows (she did about 10 one tour) I still couldn’t talk to them in the way other people could. I couldn’t partake in much small talk or have long discussions.

When I would drink I would be able to talk more and this was proven when I talked to Scott from Something With Numbers for two hours straight. It was also the first time I realised I tend to monologue.

I was also a part of the Wollongong music scene. I’d take photos of upcoming bands, give them photos and sometimes get paid for it. The money wasn’t much of a motivator but when I kept failing to find work I decided that I would try to make a career out of it. The most money I ever made was $160 when I went to Balmain to take photos of a band I wasn’t even that fond of.

Most of the bands I knew all knew each other and toured with each other. Some bands I got really attached to like Avalon Drive who have always been really good with their fans. When I did some volunteer work at Roadhouse Music (after lying about working there) I met The Cops and went to a few more shows and gave them photos. They supported Dallas Crane who I really enjoyed and then You Am I played and I saw it as a good opportunity to really get some attention on my photography.

It's The Cops @ some Triple J Aus Music Month rooftop event

I named my photography Lost Through the Lens after trying to think up the most Emo name mixed with Harry Potter. I went through so many different names but this one stuck. It was going to be called Spectacular Photography. Bands would thank Lost Through the Lens for taking photos of them tonight because I usually asked to get on the guest list. I was going to so many shows and couldn’t afford it…I also just really loved getting on the guest list. I’d trade photos for free merchandise and a few bands did give me free EP’s and t-shirts. On the very last Irrelevant gig I went to they gave me three shirts, some stickers, a neckerchief and I bought some badges because I felt they were spoiling me.

As the years went by and I started to befriend fans of the bands I knew I started to see little need in meeting more bands or even hanging out with the one’s I knew. I still made an effort to talk to bands to work on social skills.

Around 2007-2008 I was getting photo passes to Fall Out Boy, Anberlin, I Killed the Prom Queen, Avenged Sevenfold, The Klaxons, Wolf & Cub, Soundwave Festival, Come Together Festival as well as taking photos of local talent (Sydney/Wollongong) but then it all fell apart.

At Soundwave I realised that I just couldn’t speak clearly that day so I went on a search to find out just what was wrong with me. A teacher said it was dyslexia so I looked into it and was surprised about how most symptoms described me. After an IQ test by like 10 University psychologists it turned out I wasn’t severe enough because my IQ was too high but my fidgeting and looking around and putting my head too close to the test page was clearly text book depression to them. Not just depression, but severe. This was the beginning of my ‘psychologists are full of…well you know’ phase.

All Time Low @ Soundwave

Turns out through my own investigations the depression was actually PMDD, a severe form of pms which gave me sudden outbursts much like meltdowns, suicide ideation and misery to the point of suicide. I went on anti-depressants and about 7 months later went off them when I had the meltdown to end all meltdowns when exposed to strobe lights for two nights in a row.

A psychologist had already diagnosed me with Asperger’s syndrome and I left her shortly after when she said my meltdowns were caused by anxiety and told me to do mindfulness meditation.

The diagnosis and the sensory issues that were to follow (side effect of medication) made it very hard for me to continue to take photos of bands. I had to leave half way through Kid Dynamite because I had a meltdown over the lights. I kept taking very long breaks between going to gigs because I just couldn’t deal with it anymore. The last photo pass I got through an online music site was AFI and just dealing with the security (after getting lost and almost hit by a taxi) was just too much for me. But I stayed to take photos. The stress was just too much for me though.

Davey Havok from AFI

Band photography did help me work on my social skills, meet my friends and develop a relationship with them (some friends I made me realise how I could never be like them and some friends I made showed me that people could be accepting of my differences) and made me realise how different I was and how limited some of my abilities were, especially in general knowledge. It increased anxiety and exacerbated my sensory issues and led to a regression of skills when I forced myself to go to a town I’d never been to before to meet a band backstage I kept worrying about.

I was a band photographer for around six years and have a lot to show for it. I may even be able to get my dream job but that would mean I’d have to go through all the stress of being treated like a sub-form of the human species from venue security and road managers, even for issues that are my symptoms. Being ridiculed for being autistic or ADHD without it even said is hard to deal with. I used to play dumb but that felt like lying to me. My sensory issues are at an extreme level and will overload me within a few minutes of being exposed. Strobes lights are the worst too. Not many people believe me when I say they give me seizures; not always grand mal but complex partial can be very uncomfortable too, especially the memory loss that follows. My medication takes away those sensory issues but replaces them with a chemically triggered social anxiety and makes me too damn sensible at a concert and I dare not mix alcohol with them.

I still want to be a photographer because not only am I good at it, but I barely have to make an effort to be. My dad passed these skills onto me. I can still hear him telling me how to work the various manual settings on a telephoto lens on his Zenit 12 XP. It never made sense for me at the time but now it does, as my own Zenit 3 has settings written in Russian and I need to really read the manual to understand how to work it.

Randomly here is a photo of Davey Lane from the Pictures, who I decided to see instead of Brand New and I'm glad I did because I had very rare opportunities to see them live. Plus I got a song dedicated to me.

I enjoy spending time with my friends too who barely judge me and accept me for who I am. Sometimes they might say something sarcastic I will interpret as an insult but I know they mean well. It’s good to have friends I share interests with and can hang out with while listening to the bands we love and I get to photograph them and keep those memories forever…and have people fuss over how good they are. I admit, taking a photo that is perfect in sharpness and in term of light and shadow or is a really clear rock shot, does make me feel like some much needed dopamine is being released.

And this is for my friends: Tim Rogers on Triple J rooftop for Aus Music month in 2008 or 2009.

Part 4 will be about what social skills I have today and how I’ve progressed and all that.

Also keep an eye out for my future posts:

“The Second Regression”

“For the Want of a Label”

This is me as an overenthusiastic 12 year old on Christmas day.

Becoming a teenager is a difficult for anyone. You have these confusing hormones and body changes to get used to as well as extra responsibilities with class work and possibly house chores (unless your parents got you doing them from a young age) and you’re breaking away from the family to spend your time mostly with friends. An autistic teenager has all this but also they’re left with unresolved confusions and questions about people and the world and so far their experience has been one of peer rejection, sibling bullying and being told that most things they do are wrong. Eventually this turns into misery and a rejection of their own – rejecting the whole entire world and becoming moody and apathetic to all things. At this time some might become more self-aware but some remain oblivious to the fact that they are so different which in my mind makes things much worse.

After I completed year 5 my mum decided it was best to take me out of public education and home school me. I wasn’t really sure why but in my later years I would look back upon my primary school years and realise what I poor student I was. It was a miracle they kept putting me through to the next year. I believe my issues were a mixture of a lack of interest, processing issues, selective mutism (anxiety) and sensory issues (although back then I was underwhelmed by my sensory environment rather than these days where every sound is like nails on a chalkboard).

I was excited to start home school even though back then I like a lot of things, I didn’t give it much thought/ didn’t know what to expect. My mum soon found out how hard I was to teach and once got so frustrated with me and I got so frustrated with myself I burst into tears. I remember truly not knowing this answer that seemed so simple to her.

As an obsessed with skateboarding 14 or 15 year old.

Eventually though, I would start to understand my lessons (I think maybe my mum changed her teaching style) and I excelled in English, speed math, geography, science and art was something to do in my free time. I remember some kids saying that people that are home schooled are always smarter than public school students and I was becoming smart – me: the one my siblings still treated like a toddler – that every teacher I’ve had lost hope in? I actually got in trouble for repeating that line to someone who got defensive about public school education. Okay…so maybe some public school students are smart.

Then out of nowhere I said to my mum that I wanted to go to high school. I was about 12 and the consistency of the school lessons started to slip. There was a social day with other home schooled kids but I didn’t care much for it. I brought my skateboard along and just skated away from everyone. I did want to be at a school with other children though, so maybe that was my reason for going to school. I knew I was bad at socialising because my brother and sisters were all in bands and I thought ‘I don’t have very many friends to be in a band.’

High school was nothing like I expected…because naturally I didn’t have any expectations. I was 13 and placed into year 7 so I was a year older than most of the students. I saw my difference as maturity and a lot of other students thought I’d been to high school before and earlier that year I had become a pro at lying and I wasn’t ready to give up on it. There was just something about people believing something that I knew wasn’t true that was so…so…rewarding? I’ve always loved to know information people don’t. I’d make a good secret agent.

Early on I seemed to do ok with the work but then it got harder and I naturally reverted back into by fantasy world. Then when I got sick for four months I got really behind in my class work, which the teacher blamed me for – and it turned out I had pneumonia and chronic fatigue shortly after.

There have always been a few people who didn’t like me for just existing and there was a brother and sister who were like this. And there was this one boy who fancied me and I didn’t know what to do so he accused me of theft and damaging his locker. Lovely.

I did have some friends but they were in the next year up and in year 9 too. They were mostly church friends but one girl lived close to me so we became great friends, even if I did end up getting along with her younger brother. I was also a helper at a Sunday school class that he was in. All the church kids went to my school but were in the Primary School area and I’d walk down there at lunchtime and say ‘hey.’ That boy was only 9 years old when he had his own girlfriend…if I am remembering playground gossip right.

The pastor’s youngest son who I talked about in part 1, Sam, also went to the school (obviously, if all church kids did) and we probably hung out more at church. I was a wanderer and would talk to people if they stood in front of me to stop me walking further and actually tried to engage me in conversation. There was one day when we walked around the church talking (he did most of the talking) and it actually felt like I had a friend, and then he returned to his actual group of friends.

My biggest bullies at my school were teachers. I wouldn’t respect the dress code and couldn’t even put fraking stickers on my uniform. I couldn’t even untuck my shirt or loosen my tie if I went to town after school. I suppose I should mention it was a Christian Baptist school (Nowra Christian Community High School), and for a very short time I sympathised with Brian Warner (Marylin Manson) who went through his own ordeal from going to a strict Christian school.

I turned apathetic towards everything. My mum and my sister were very close because they both did church things. My whole school was Christian and almost everybody I saw was a Christian – I had to go to church as well. There were a select few boys at my school who didn’t want anything to do with it and naturally they were my friends (well, I hung out with them at school at least – I’d be surprised when they actually came over in the Summer to hang out at my home and I turned them away) and I dated a few.

I couldn’t understand dating. It was expected of me for being the oldest person in my class so it made sense that I dated the only other 13 year old in my class. He was a character, had no off button and just said whatever came to his mind. He built rockets and at the time I didn’t find it nerdy. Even now I wouldn’t find it nerdy. But I didn’t love him, he was just a friend. We didn’t even talk about our interests. The only time we talked was in our group of friends. Again, not the kind of friends I would go to their house to hangover, though some of them thought that of me.

Eventually, the slipping grades and the bullying of my teachers was too much and hiding in school toilets during class time wasn’t enough of an escape (or going to sickbay during PE – I was forcibly removed from it by my PE teacher when I actually was sick) and the school prefects always found me. My teacher said I needed to make more of an effort, so I made more of an effort to leave.

So I went back to home school. I can’t even remember how my mum reacted when I told her I didn’t want to go back. These days it would take a meltdown just to get my point across. By these days I mean 3 months ago ‘these days’ – now I could tell her because I’m no longer under her care.

Home school the second time round fizzled out even quicker than before. I actually felt like I had no future. I’d take my skateboard and skate around for 4 hours on an empty stomach. Don’t ask me why. When I get depressed I don’t eat. I met kids around my street who talked to me and I barely talked back. I started to integrate my own town into my fantasy world. Now I could go on my own adventures to fight for survival or rescue some trapped animal and sometimes I got lost but always found my way home.

My collection when I was 14, still collect these days...it's turned rather sci-fi/sciency though

This year was the most miserable for me and what got me out of it was that I became a Christian. Things finally started to turn around for me. My mum was so proud of me. My pastor who had never talked to me said ‘congratulations.’ I remember the night was April 17, 1999 and a guest speaker, a Prophet Ashley was asking people to come forward to receive Jesus into their life.

I don’t want to get into too much detail because I’ve met a lot of atheists these past 10 years. All I know is I’ve been close to God since I was 5 and have always felt that he was my only friend in the world. Even through the misery of being a 13 year old I talked to him. When I was 14 I finally advertised it but as much as I loved my church and my new friends there was always a part of me that wanted to know more. And I found out just how much I wanted to know through the Afghanistan war and this new word called anarchism.

From researching anarchism online I found out it was actually called libertarian communism so I started to research communism. I would read about it for hours each day. My favourite line my sister had ever said to me was: ‘you can’t be a communist’ and then she told my elder sister who was an anarchist, who praised me and tried to get me into anarchism but still corresponded with me about political matters. I think she was living in Sydney at this time (she now lives in Portland, OR). I really valued this time talking with my big sis because my mum and my sister were so into the church and I just felt left out. After I became a Christian this changed a little but I always had my questions and I always felt like there were too many barriers put in place around the Church, just like the high steel fences that surround the church grounds.

It was my new special interest in Humanities at TAFE (as well as being a bit of a teacher’s pet) that got me into communism and since then it’s been a constant battle between my religion and my ideals. I eventually learnt that I couldn’t be both – and this started up my ‘on/off’ Christian phase that is still going today.

I started going to TAFE (a type of a community college) when I was 15 at the urging of my mum. I didn’t want to but I’m beginning to think I was a person that needed a push to do anything – read my blog about Pathological Avoidance syndrome and you’ll understand why.

My first course was an adult education course (learning how to learn – that was a great joke amongst the students – but was an actual learning module), which involved a first aide course, one lesson of OH&S (Occupational Health and Safety), then I did a few IT courses; build your own PC and graphic design and finally my year 10/11/12 equivalent.

It was all going so smoothly until TPC (tertiary preparation certificate – year 11/12) where I struggled so much I actually had to formally ask for more time with my assignments, I scored low on the maths exams and my science teacher and classmates turned against me.

One science lesson was simple and involved team work where you had to go around and ask other students on the campus survey questions. I tagged along not feeling much like a leader or investigator and my friends spent the whole time talking with their friends, who I didn’t like very much. It turns out that during idle chit chat they got them to fill out the survey questions and blamed me for my lack of team work, and my science teacher gave me a hard time for not doing my class work. You just try to teach someone who can’t even understand what they read and who struggles to learn anything they hardly have an interest in. These days I of course love science and would have wiped the floor with them and would probably become the teacher’s pet.

Even with all this happening no teacher suggested I see doctor for learning issues or even social issues. This was 2002 – Asperger’s or ADHD were on the medical books.

I was obsessed with dogs too and loved my dogs Jack (Jack Russell) and Bobby (Silky/terrier cross).

I managed to scrape by a year 12 certificate by just scraping a pass with maths. I remember when I had to drop math which may have been in year 10 which my mum went ballistic about, then said, or rather yelled something about ‘we all got to work sh** jobs and do things we don’t like…” I rather enjoy remembering all the criticisms I received in life prior to my diagnoses. At the time it made me miserable but now it’s just evidence because I really did have learning issues which was more than not doing the work because it didn’t interest me.

I remember being 16 or 17 and telling my mum I was going to look for work at the start of one year but she said not to worry about that yet, so I didn’t. Eventually though, I was doing so many TAFE course over the years that I got so sick of it that I just wanted to work.

I still didn’t have much of a social life. One TAFE student asked me one day to lunch and I got to meet her friends. They let me sit even though I was usually silent and I know when you’re like that people can say whatever about you and you just remain silent (one thing I hated about not speaking much – selective mutism look it up!) and they usually made some joke about me talking too much. It was how the youth at church treated me too.

At the time I wanted to get into PC repair because I liked learning about the individual components of the hard drive and how a computer actually worked from start-up to programs working in the background. I kind of fell behind in my work but once I handed it in and did my exams I passed. I would have got a distinction if I did my homework and handed it in on time, instead of forgetting to and asking for an extension.

I was still reading about communism, now Marxism, and got into the Socialist Alliance – not joined, just interested in them. They had a Marxist 2003 forum and I signed up. I think the first one was in a small university building down some stairs. I felt like I was in an underground movement. My sister Jyoti went with me and I thought she had complained to my mum that I didn’t say much but really it was because I didn’t eat much. At this time when I went to Sydney I couldn’t eat – it was very hard to break out of too. I didn’t speak up during discussion though and when I went to Marxism 2004 the next year, alone, I had to navigate through the much larger UTS building. My dad drove me and had to keep driving me because I just couldn’t work out how to get back to his place – though now it’s so so easy – basically, it’s walking from the UTS to Pitt St. When one member recognised me from last year’s forum he invited me to lunch, which I said yes to but then I walked in the other direction, all the time hating myself. I couldn’t even talk to other socialists which I not only shared a common interest with but a passion, a goal, a fraking lifestyle!

After Marxism 2004 I decided not to go back next year. I had missed out on seeing Sparta live and I didn’t like that. I made it my mission to go to the next gig I really wanted to go to (at this time I had NEVER seen a live band on my own and that wasn’t international – unless you count R.A.M.B.O which I wouldn’t) even if that meant missing my sister’s 21^st birthday party or going to a concert with people I thought were my friends but really weren’t, and with a point and shoot film camera my dad gave to me and my tightest jeans I went with some old school chums to see Alexisonfire and about eight Australian bands. The Hot Lies were there and they were good fun but one hardcore band and one crazy ass guitarist, who jumped into the crowd with his guitar, made me fall in love with the rock/punk music scene and made me want to experience more of it, and becoming a band photographer was a great excuse for being allowed to go to as many gigs as possible and put searching for work on hold for the next couple of years.

Even though I always say my sisters were critical of me, I still love them.

And mere words are not enough to describe how much I love my mum. And obviously I love my brothers too, even if I can't find any photos of me with them.

Thursday, Factory Theatre. Photo by Lost Through the Lens (me)

I’m going to take a little detour from my usual blog posts about growing up with autism or what I experience today and instead thought I’d focus on a band that has been a special interest of mine for about seven years – though I think calling them a special interest takes away the importance the band has had on me. Special interest is a label doctors apply to autistics for our abnormal amount of focus and knowledge on a subject, when in truth our interests become an extended part of our personality. They are all we ever focus on, think about and to the displeasure of many people around us, talk about. We become so passionate about them that we can’t understand why others don’t feel the same and end up pitying people when they make fun of us for them, instead of annoyed or upset.

The title of the post is a little saying of mine to say to people when they made some comment about my Thursday shirts and that it was the wrong day to wear it or something…Oh yeah, almost seven years of this. I would simply respond ‘it’s Thursday everyday.’

When I found out Thursday were breaking up I was in shock and it still hasn’t fully registered in me yet. Although I did feel depressed (after crying shortly) but tried to get myself through it. I had to press on. I had so much to do today, including writing this blog post. I remember when Stargate Universe was cancelled and it finally registered with me and I literally just stopped. I lay on the couch and stared blankly at the TV for hours. It happened again when the SciFi channel moved Stargate SG1 to a different time slot. I sort of don’t deal with change well.

I don’t want this post to be about me talking about how I don’t deal well with change. I’m well aware about what happens and I’m getting kind of tired of it. I know if I feel unfocused, angry and miserable that it could have something to do with Thursday breaking up – I already had a mini meltdown because I lost my Thursday broken record shirt and I was obsessively searching for it. It must be some weird autistic thing: I want to gather all my Thursday merchandise together and listen to them all day.

I don’t want this to be a sad post though. My friends know how sad I am over this and what Thursday meant to me.

You know, I’ve witnessed a lot of bands breaking up that I’ve loved but it’s nothing compared to this. Sure I was upset when they broke up especially those with band members I knew and would never get to see again but Thursday have always been my number one – will always be my number one. I’m assertive so once I say Thursday is my favourite band it’s final, unmoving. But I have a lot of emotion toward them too which I will talk about – not oh my god I’m so sad that they broke up but about how their music and words made me feel.

The first time I heard Thursday was on Christmas Day in 2004. I think the song was Signals Over the Air which my brother put on, my sister complained about it and I enjoyed it silently, as I was not much of a talker back then. Then when I went to a From Autumn to Ashes gig (or was it Day of Contempt?) my friends were listening to them as well, so I decided that I need to get into this. I even crashed my own computer from downloading War All the Time (I have bought many of their other albums – I’ll probably get a rare vinyl of it seeing how it’s my favourite album of all time) and once I got the computer repaired downloaded it again.

I was gutted when I missed a tour they did with Poison the Well earlier that year and I didn’t get to see them live until 2008, and since I was a band photographer with a few years’ experience under my belt and knew two websites that could get me media passes (and also had a friend with connection to Bombshellzine who I actually took photos for) I tried my hardest to get a media pass. I got to shoot Soundwave Festival 2008 for Bombshellzine. I braved the heat and my stress around crowds and my growing hate towards security for this one band only, although, it was kind of sweet getting to take photos of Motion City Soundtrack too.

Thursday, Sydney Soundwave 2008. Photo by Lost Through the Lens (me.)

Around this time there was something I noticed about myself: because I was speaking more I was tripping over my words, mispronouncing, slurring and changing my mind the very second I would speak so both sentences kind of layered over each other, and I stuttered.

The only people I talked to at Soundwave were other band photographers, my heroes really. There was Matt Booy and Kane Hibbered as well as my friend nicknamed Lambchop and I talked to a few others, but I was messing up my words the whole time, so when it actually came to meeting Thursday (thanks to the Dwarf for media pass that I tore every nail off my fingers in anxiety waiting to be approved for) I turned right around and walked away. I was very insecure about my speech and was both jealous and ashamed when my friend with a severe stutter actually got to meet them. Now though, messing up my words is standard procedure and I at least have an idea about why it happens. When it comes to meeting bands these days I can medicate and have a few beers and you can’t really shut me up. I talk about my interests though and anything that comes to mind. I have no filter although I’m aware of some social rules. I don’t agree with them.

Thursday, Factory Theatre 2008. Photo by Lost Through the Lens (me).

I’m glad Thursday is doing one last tour of Australia. I live in Sydney now and my friends are trying really hard to get me out to gigs and I reply that I’m not really into gigs anymore, if I see a band it has to a band I really love, like Thursday or something…

I have extreme light sensitivity these days which triggers a seizure but I can manage them. If I’m going to see Thursday one last time it has to be memorable, not stressful. I probably won’t take photos. I’m still trying to decide if I want to become a photographer for BLUNT magazine. I’m trying to adapt to Sydney and still have breakdowns every now and then. If they tour next year, maybe, definitely. I want to take photos of Death Cab For Cutie so hopefully I’ll have my portfolio all sent in by then. If not I think I’ll stand back, medicate, avoid alcohol and just enjoy the show. I probably won’t get those strong emotions I get when so close to the front, where all I see is the stage and the band and the crowd disappears and it feels like it’s just me and the band. An autistic’s intense attention to detail and over focus on one part of an object can be a great coping mechanism.

And now it’s time for me to talk about my reaction to their music and words. I get so emotional when writing this because I get this intense feeling just remembering it. If I had to explain this face to face to somebody I couldn’t, the emotions would overtake me.

I love everything about Thursday’s music; the raw aggression, the reoccurring themes, the verbosity of the lyrics and the fact that I know the songs are so personal yet I can relate to them. But the music does something to me physically. Emotion to me is like a force that weighs down on me and has an almost narcotic feeling on me. It can cause my synapses to become overactive and each note has a colour, a shape, and a feeling associated with it. This is called synaesthesia but Thursday doesn’t bring it as powerfully as the more psychedelic music that I listen to. What really touches me are the words, they have motion to them and can bring about an emotional reaction through them alone. It’s actually difficult for me to explain in much detail about how the words affect me. It’s just so personal and the emotions are so strong. What I can say is that certain parts do just make me stop and completely focus on them and really think about what they mean. Essentially, I just get drunk from the music.

I have favourite songs that mean a lot to me and are reserved for certain times.

Division St is not only my favourite song of all time on my favourite album of all time but it’s comforting to listen to when I’m lost or scared especially if I’m walking down a strange dark street. I used to call the street just around the corner to my sister’s street in Marrickville ‘Division St’ because it was so scary to walk down it when coming home from a gig. Division St has since moved to Norton St.

Asleep In the Chapel is really visual to me and was a kind of rebellion song for when I went to church. There are a lot of song like this by various bands. You have to have been forced to go to church for 11 years to understand it. It might have had something to do with being a socialist too.

Steps Ascending got me through my dad’s death and it almost always makes me cry. This is another visual song to me. I think they all are.

There are so many songs that I love and mean something to me but it’s the theme of trains that gets me. I know that Geoff Rickley (singer) had a friend that got hit by a train and since my dad’s passing death is a very sensitive subject for me. I couldn’t feel any emotion towards it at first but now every time I hear about it happening I get sad, especially when your favourite singer is pouring his soul out over it.

My own blog title is inspired by the theme of trains. I may have changed my background information like I do every year but I did write about how Platform 25 was the place where I experienced the most anxiety and hopelessness and listening to Thursday on my iPod got me through it. People that live in the Illawarra should know that Platform 25 is one of the most inconveniently placed underground stations that take about 20 minutes to get to, so when you’re worrying about whether you’ll miss your train you usually end up waiting another 20 in that crowded and noisy tunnel. It’s always on a track work day too so you find out the trains leaving from there last minute when you’re above ground at the platform that you usually wait for the train home on. At least that’s one thing I don’t have to worry about now that I live in Sydney.

And now I’m going to continue to listen to Thursday’s complete discography and allow the music to take my mind into another world. Or I’ll just sit in my chair with my head uplifted and slightly tilted to the side, with stupid grin on my face.

I’ll miss you, Thursday.

Thursday, Sydney Soundwave 2008. Photo by Lost Through the Lens (me).

Division St really is the best song in the entire Universe.

Update: Hmm, had a shutdown, Stargate Universe style. I should have expected this.

The social anxiety is confusing because ever since my regression (autistic symptoms getting worse because of appetite suppression/ seizures/ forcing self into knowingly stressful situations) it was something I seldom experienced. I used to think I had such severe sensory issues that I couldn’t even notice people around me to feel anxious. And why feel anxious? Do I really want to be like them or a nerdy scifi lover who has a habit of getting obsessed with physics for less than three weeks? I don’t want to be like them with their addictive habits and fashion and lack of SciFi TV watching. Most importantly, I don’t want to be like them and their superior thinking to people who have mental disabilities. OK, not all are like that but I’ve come across many like that.

Normally it doesn’t matter much if I come across as socially awkward around people. Usually I just sit there the whole time thinking “this whole conversation is so NT…I wanna talk about Area 51” But with You Am I fans I just want to fit in a bit more. They are my friends and accept me for who I am and don’t seem to mind if I just sit next to them remaining silent but sometimes I wish that I could join in on a conversation and maybe not seem like I am reading out of an encyclopaedia whenever I do attempt to say something.

Before I went on medication I used to experience massive sensory overload at gigs. I still do but not as severe. In order to save myself from sensory overload usually accompanied by an angry outburst or a shutdown I have to take an extra two dosages which isn’t exactly healthy but we’re talking an extra 5mg every 6 hours and I don’t drink that much alcohol because of the next subject I’m about to go into.

From December of last year I seemed to develop a mild seizure disorder out of nowhere. By mild I mean I don’t lose consciousness even if I go all the way up to clonic tonic (gran mal). My most frequent seizures are of the temporal lobe kind which affects behaviour and gives me auditory and visual hallucinations and add extreme sound sensitivity to that, some mild agoraphobia and I become a bit paranoid at night. The second most common seizures I have are complex partial where my body just becomes rigid and I get some short term memory loss and Todd’s paralysis. It’s become so common now that people would be worried at how casually I describe the process.

My seizures are manageable as long as I avoid rich and sweet foods, caffeine, alcohol and flashing lights. I can’t even watch lightning anymore and look away when there are flashing lights on a videogame or movie. When it comes to concerts though even closing my eyes isn’t enough.

On the day of the most recent You Am I gig I broke literally every rule. I had a cupcake (this can seriously be a seizure trigger), had a few beers and I had a panic attack (stress is also bad for seizures) when I was worrying when my friends would come to my house before the gig. I’m all about time management. Then I took the longest shortcut possible to the gig because when someone explains something to me I do it exactly that way and not take the five minute shortcut I vaguely remembered taking. To make matters worse when I become aware of my symptoms I get a bit angry…miserable…suicidal.

Ever since moving to Sydney I’ve felt like my emotional intelligence (and some cognitive intelligence) has gone back ten years. It’s like I’m learning to walk again. I cannot function without a to-do list on a phone, I worry about starving or running out of money (I did this before leaving home by the way – maybe people feel like this occasionally but at least once every two days I have a mini meltdown over it), and I’m afraid of walking on my own street without another person or medication.

I’m also stimming less. Maybe I ought to do that to calm down. That’s what autistic people do to calm down in stressful environments. I’ve done it a little bit but nothing like hand flapping. Screw social acceptable customs. If I want to hand flap I’ll bloody hand flap.

I think most of the stress is because the people I live with don’t believe in diagnostic labels and don’t’ even think I could have ADHD. I just find it weird because I’m textbook autistic and ADHD. I’m not extremely hyperactive but I can be. I’m more the forget what that person just said five seconds ago, can’t speak a single clear sentence and can’t keep focus for longer than ten seconds (and some days can’t even focus at all). I’m constantly obsessed with certain subjects, must have a plan, will breakdown over change and don’t share my emotions. I’ve learnt them but I still can’t share them. I will not talk to anyone if I wasn’t medicated too. Well, there are some people I’d talk too but I’d be cranky and foggy and ooh, that’s interesting…*walks off.* I can easily detach from emotions too and really can’t feel close to people. It’s like there’s a brick wall between us or something.

But back to You Am gigs and feeling miserable after because I wasn’t social enough or maybe shouldn’t have said that or done that or…strobe lights, oh my! Yeah, I think the Ritalin is working.

I get sensory overload at gigs before I even see the stage lights. It’s from the people, something I call clutter: too much visual information in front of me. A lot of people look at me strangely when they see me looking up at the ceiling or at the Annandale Hotel, the fans. It’s because it’s a single static object that is unchanging or if it’s turned on it’s at least repeating. I can stare at objects for hours on end and sometimes have. It takes the stress away from looking at my chaotic environment and I have a great attention to detail. I love shapes and tones and textures and most of my objects have sounds. Most of the objects in my room have sound or can be remotely controlled. People think it’s weird that I can hate background noise but turn on all my planes, Doctor Who toys, and robots and not be annoyed – they certainly are – but it’s because I have control over the sound. I used to think autism was about wanting to be in control of your environment but the truth is I have Pathological Demand Avoidance disorder which makes me angry or anxious if I can’t have some control; the fear of change, the daily plans and my routines are all explained by it. Also, if you do a search on it the description is like reading about my early childhood.

Because of the PDA or the fact that I’m an INTJ (Introverted Thinking Judgement) personality type I like to work out my own solutions to problems. I can be miserable and complain for a short time but I really need to get control over a situation. I was actually thinking about never seeing You Am I again but then I wanted to take better photos and because I’m now living in Sydney all the photographing opportunities I used to dream of having back in Nowra are now possible.

My brother who has been in the music scene for many years (in bands since he was like thirteen but was also in a very popular band called Irrelevant) says he can get me a job at BLUNT Magazine. Back when I was at 313 Media school in Nowra I was asked what my ideal job would be and I answered being a photographer for BLUNT Magazine. I’ve been collecting issues since 2005 and I won a skateboard through them. In order for that to happen I need to put together an updated portfolio and start adapting to the live music scene again.

People say that living in Sydney will dull my senses eventually but my sensitivity is acquired through the many years of being over medicated. Actually, some of that medication was a life saver and the stupidly small dose of Ritalin I’m on hardly gives me any side effects. In fact, it decreases sensory issues, which is probably why I get so damn anxious all the time.

I hope my senses dull. Having sensitivity to sound and light is the worst. The tactile sensitivity is a bit annoying but not as crippling as the former. The only thing I like about it is the synaesthesia; where through one sense you experience another. I try to suppress it when I watch live bands because I can see the colours the guitars are making. Sometimes it’s a good distraction but other times I just stand there and focus on it and don’t do a whole lot else.

I wonder how I look when trying to avoid the lights. Flashing lights are the worst. I have mini seizures even when I try to look away or close my eyes. Even with eyes closed I can see the flashing in my mind. Ritalin gets me through it without threatening the life of the person next to me (see: The Vines, The Metro 2011) but it makes me so damn sensible and make me analyse everything I see very loudly in my mind.

Sometimes it just seems like so much to make sure I medicate and eat and not drink too much alcohol and make sure I don’t have a meltdown or I’ll get kicked out of the venue for me to keep going back. Maybe it’s the timing that really set me off. Only five days ago I moved into a completely different area, lost my clothes, couldn’t use my computer and out of nowhere experienced these sweltering hot days. Not to mention I haven’t written one chapter of Working Memory and it usually only took four days of not writing it to make me feel miserable back in Nowra. I really don’t know what’s going on with that. D Publishing still hasn’t started up so I haven’t got a publisher. But I’ll get back into it, I know I will. I’ve been watching loads of science fiction and getting more and more ideas for it which I shouldn’t have because I don’t want to change any more of my story.

I wonder if I’ll ever adjust, feel OK about buying food from the corner store. There’s Terrific Scientific which I really love and there was this one store in Nowra that I‘d go to which helped develop some social skills.

There’s always my family and friends to confide in but when asked if I’m OK I’ll lie, I’ll always lie. Telling the truth will be sharing an emotion which is something I find difficult to do. I’d rather deal with it on my own…even if it kills me.

I suppose I am adapting a little bit. I live with a few people so have gotten use to them and all the cats. I have to be more responsible for my own cat too. I always clean up after myself and follow the rules of the house down to a t as soon as I’m made aware of them. It’s just the outside world I’m having difficulty dealing with. The traffic is so damn loud especially on George St where I feel like I’m in a warzone. There are people everywhere while in Nowra you can walk around for hours and only come across two or three handfuls of people. And the town was a twenty minute walk from my house, not outside my doorstep.

A few days ago I kept having these short little breakdowns and it took me awhile to realise it was because I was doing way too much without having breaks. I just felt like “oh yes did this and this and still need to go out for lunch. OK I’m just going to have a short breakdown before I go out again.” But there’s one thing I like about being in Sydney and that’s being close to my family, especially my immediate family. They know just who I am and on one side I have my sister who I share a lot of interests with then there’s my brother who has a better memory than me for physics so it’s like doing re-vision when talking to him, and for some reason people really are interested in conspiracy theories that I hardly believe in. Most of the subjects I talk about are conspiracy theories and I’m a rational Vulcan who is very sceptical of them. Or I just talk about my book.

Maybe I will adjust to living in the city. I’ll update in another six months to let you all know how much progress I’ve made. Next I’ll update Social Growth with Part II: my teen years.