8 Years of Autism Awareness – A Reflection

This Sunday will mark my 8th Autism Awareness Day and Month. Originally it was to bring awareness of the very broad spectrum of autism and to push for more services for both autistic children and adults. Previously, autism was thought as a condition that severely affected children and was often confused as an intellectual disability. Now a vast majority of people know that it can be either mild or severe, and that those mild symptoms can still be impairing. Doctors, parents, teachers, siblings and autistic individuals have all taken part to raise awareness. Doctors and scientists have shared their increasing knowledge through research which has helped show autism as a real neurological difference and has explained much of the behaviour through science. Teachers, parents and siblings have shared their experience with taking care of someone with autism, but autistic people have given real insight into their everyday experience.

Every year on Autism Awareness Day I’ve shared my own experiences and through this blog I talk about my day to day life with autism, my struggles with interpersonal relationships and a detailed breakdown of my other symptoms.
I started this blog as a way to explain my experiences to family and friends, as I was not able to tell them these things face to face. Then parents of autistic children told them I helped them better understand what their child goes through, so now it’s become a portal of self-advocacy with a strong emphasis on making neurotypical people understand the autism experience, as well as what it’s like to live with ADHD and mental illness.

Eight years ago I was a very different person to how I am now. People who have only known me for a few years would not even recognize me from back then. I could not have a conversation with anyone. I was not aware that some of my behaviour could have been considered rude and when confronted about it I just thought people were overreacting and if they interrupted my routine I would have lost it at them, and then blamed them for not knowing that’s how I would have reacted. I wouldn’t initiate conversation with anyone. I didn’t really want to. Just prior to my diagnosis I had very severe social anxiety. My mind would freeze up when I sat with a group and though I may wanted to reply my mind was completely blank.

Post-Asperger’s syndrome diagnosis my social anxiety dissipated because I had a reason to why I was so different and I was fine with it. I didn’t worry so much about fitting in and I stopped trying to be like everyone else. I no longer envied them. Even when people made fun of me for being a nerd, I felt good that I didn’t have to go with the flow, what I called ‘collective consciousness.’
It took a couple weeks on Ritalin to make me want to talk to people though. It enhanced my empathetic ability and at the same time an online forum full of people with ADHD were teaching me more about being empathetic. Some of those posts would originally start out really hostile but by the end the more higher functioning members would be able to explain why people reacted like they did and that we need to respect differences of opinion, and always keep in mind how our words might impact others. It’s something I always noted and now it’s my default reaction to any type of news article I read, the inevitable flame war in the comments section and even how I perceive the political opposition (mainly conservatives).

Being on Ritalin made my mind feel so clear and it slowed down the noise in my brain enough that I had time to work on my social skills. I learned everything from physics to advance math and worked on a science fiction novel. The energy and clarity of mind it gave me allowed me to learn something new every day.
But then the side effects came in so I had to stop taking them, and some autistic symptoms once again became hard to manage but the social skills I learned in that time stayed intact.

In the last 5-6 years I’ve made the most progress in my social skills. It was mostly through higher functioning autistics basically revealing to me social customs and social hierarchy, most of which I ignore. I decided to learn and put into practice social skills that were polite but not ego stroking. I skipped over any rule that felt unnecessary to me, particularly the amount of lies you have to tell people to make them feel good about themselves. If I like what you’re wearing I’ll tell you, but I’m not going to congratulate you for dressing yourself like you’re a 3 year old.

My social skills are now advanced enough to have conversations with people in my very jumbled way of talking. My brain often gets stuck so conversations I start do not last long. I don’t really like talking when I hear myself talk. When people go out of their way to prove me wrong and their better conversationalists than me I just feel humiliated and really never want to talk to those people again. I mean what is the point of trying to make a person who can’t even speak one fluent sentence or even organize a sentence in their brain feel bad? I’m not giving all that effort to just be looked down on. Those people are not worth my time or respect. People like that have in the past made me just want to stop talking to people but I know there are some decent folks out there.

I’ve had to go back to reevaluating my social skills lately. I’m finding I’m getting hurt by people when it might not be their fault. Although, people use so little tact these days that they hardly notice when they’ve been rude. At times I wonder why I still bother to perfect my social skills when the rest of the world is losing theirs. But this is about me and becoming the best person I can be, even if people are becoming like the old me. Not because they have a developmental disorder either, but because they live on social media the lack of face to face engagement have lost much of that inborn empathy, not to mention the ADHD symptoms they mimic from being dependent on digital technology.

I don’t socialise that much these days anyway. When the opportunity arises I’ll take it but I’m not actively looking for it, kind of like when I was a kid. My latest ‘friends’ have just seemed to want to get something out of me and most other people want more of a take and take relationship. I do all the giving but get nothing in return. I don’t stick around those people for long.
I don’t feel connected to a single person on the Earth. I never have. There’s always this invisible wall between me and people. Whatever feeling people get from being with someone else I don’t feel it. A lot of people in the autistic community feel the same way. I’m not really saying that as a downer, more stating a fact.

As for autism awareness, well it’s time we moved on from awareness into acceptance. What that means is autistic people should still get treatment and services but they need to be included more in society and not forced to change so people can be more comfortable around them.  Autistic people have such intense focus on their interests that they can learn expert knowledge about them in a short time, and their logical brains which seem to give them a better understanding of technology is why so many employers encourage them to join I.T. The artistic autistics like me though find it harder to have our skills appreciated. I’ve been able to go pretty far in my photography. I started out as a fan who wanted to take photos of his favourite bands and then I got free access to some big shows and got to hang out with the bands. Now I’m a protest photographer which means I feel less nervous about going to protests (I don’t really have to chant words while working). I’ve been focusing more on story writing and my ADHD and my lifetime love of film has led me toward script writing. So, I can also be of some use even if I need a calculator to do math.

There are other behaviours autistics need to do in order to be able to cope. Stimming is one such thing. It’s anything from hand flapping to pacing to making noises. It may make people feel uncomfortable so parents and teachers may want to discourage the behaviour but it’s actually a good way to calm anxiety. I even do a bit of hand flapping when I start to feel anxious.

Our intense focus on interests should be encouraged too. Many us of have turned our interests into a career. It’s also a good way to ward off feelings of depression and be less focused on the things we struggle with. When I’ve returned home after having a disastrous social experience it’s good to know I can soon forget about it by focusing on something that makes me happy or that I’m actually good at.

So, when you hear about autism awareness in April ignore all the charities talking about how terrible autism is for families just so they can get a few bucks out of you, and instead focus on articles that talk about inclusion of autistic people and accepting them into the wider community. Because we are people just like you.

Spy

Advertisements

As an Autistic These are the Things I Dread the Most About Christmas

I dread the crowded streets as people rush to buy Christmas presents and having to hold my feelings of discomfort bordering on anger inside because people are too loud and too close, and are essentially tourists in the stores that are usually my safety zones, my escape from the world of chaos outside.

I dread people changing plans last minute. I really really don’t want that happen. If Christmas lunch is changed to the 26th, or not at 12 o’clock or the venue is changed.

I dread having a depressive episode during such a happy season.

I dread the last minute pre-Christmas family drama coming out of nowhere.

I dread the bendy roads that give me motion sickness on the way to Christmas lunch.

I dread that first few minutes of awkwardness when I arrive at Christmas lunch, not knowing whether to sit or stand, or where to sit.

I dread the loud and sometimes angry voices from the kitchen, but glad it has nothing to do with me.

I dread people asking me what I’ve been up to lately and trying to make it sound as interesting as possible.

I dread trying to use small talk to talk to people and the resulting very uncomfortable long gap of silence that always follows and makes me feel like this is hopeless.

I dread remembering to make eye contact, but not stare too long.

I dread when I go to talk and my words come out in a garbled mess and I try desperately to make the next sentence come out fluently and coherently.

I dread being hugged and made to feel like everyone likes to hug, and then feeling like a cold psychopath because I don’t like them. I like hugs when given a choice to make them.

I dread being depressed on such a happy day.

I dread having to bite my tongue when someone says something offensive.

I dread telling an extrovert something meant just for them and they go and tell it to everyone else in their bellowing voice.

I dread my nephews opening the presents I bought them that I carefully and thoughtfully selected, only to push them aside and look for more presents

I dread my nephews losing interest in me because I have no cool games they can play.

I dread trying to talk to my nieces.

I dread meeting strangers that are friends of the family.

I dread some older family members (especially relatives I barely see) for giving me a hard time about being quiet.

I dread not having a quiet space to retreat to when I feel overwhelmed or depressed.

I dread people interrupting me when I’m engaged in something important, even if I’m just talking to someone on social media.

I dread drinking too much and end up acting like a buffoon, just because I wanted to feel less nervous and be comfortable speaking.

I dread people acting like their opinions are facts.

I dread that one person who makes a racist comment and I dread not telling them what I really think of them.

I dread family drama.

I dread the food not being ready in time. I dread having to ask what dish has citrus in it.

I dread meeting strangers and seeing their disappointed looks when I barely talk to them.

I dread drunk people telling me not to be offended.

I dread it being over.

Remember to ask about what your autistic family member feels, worries about and needs on Christmas Day.

Note: This doesn’t mean I won’t try to talk to anyone or hell, even hug, but I think it’s important to show people how I struggle.

The Conversation Conundrum

Engaging in conversation comes easy to most because of the way the human brain develops throughout childhood. We have an innate ability to pick up on social behaviour which helps us build up our social skills that by around the age of 10 we have a basic ability to talk to other children about the common things children talk about. However, for some of us this innate ability is missing, especially in those with autism, other neurological disorders or people with delayed social development.

I’m in the latter category. For me personally I never really had the desire to socialise and due to a severe social anxiety disorder known as selective mutism I rarely talked outside the family home. I saw some progress in my teens but I didn’t see much dramatic change until my mid 20s. By this time I was already diagnosed with Asperger’s syndrome and ADHD, and I can’t deny that being prescribed Ritalin not only helped me talk more but have the desire to talk to people at all. I finally had the patience and clear headedness to be able to pick up on social behaviour and put it into practice.

Learning new social skills was a matter of listening to two other people sit beside me and have a conversation and to carefully watch their body language; anything from the length of eye contact made to subtle hand movements. I often got some pretty confused looks from the people I was secretly learning from. I didn’t just pick up social skills from people talking to each other or from my own feeble attempts at having a conversation with someone but from watching actors on TV and in film. I’m a longtime fan of children’s films in the 80s and 90s and I’ve always mimicked the words, mannerisms and even dress sense of those young protagonists.

Some TV shows have been central to my social development or just made me understand confusing neurotypical (someone without a neurological disorder) behaviour. That wasn’t something I wanted to mimic but just be aware of because it was so illogical, things like lying and keeping secrets and the eventual confrontation that surfaced after being caught out. It was mostly science fiction shows that taught me the importance of teamwork and how to think about others. Recently, a TV show on Netflix called Granite Flats showed me how to apologize to people. These sound like very simple things to know but I’m not just taught these things by the characters on a show or film, but the way they say these things helps me actually get the words out at all otherwise it’s very difficult for me to say things such as ‘sorry.’ I don’t just mimic actors but become their characters. I actually sound exactly like the characters, anyone from Data on Star Trek to Captain Malcolm Reynolds from Firefly. I rather enjoy sounding like a space cowboy too. But I can also mimic people I know if I look up to them enough.

I’ve come far in the 5 or so years that I’ve been training up my social skills. I’ve also lost them and had to build them up over again which is what happens to autistic adults when they are under extreme stress. I can even lose these skills if I go a long time without talking to anyone. So, it’s important for me to get out there not just for emotional reasons but so I can retain the skills I’ve learned and continue to build them up. There are differences between what an autistic person wants to get out of a conversation verses an NT. An NT, or non-autistic person doesn’t care so much about what words are said but just the time spent with another person, whereas an autistic person really wants to share information and hopes that the other person will learn something new and remember it. That’s not always the case though. In my experience people don’t remember much of what was said at all.

I do enjoy the time I get to spend with people. I’m trying to focus less on the information I give and more on the time spent, especially when building a new relationship with someone. Talking though is still very hard for me to do. I have the usual problems that anyone with social awkwardness or delayed social skills goes through like not knowing what to say at all or worrying about whether the topic is relevant or socially acceptable, and then I have to work out whether what I say will come across as offensive before even saying it. But the actual act of speaking and making thoughts formed in my mind come out of my mouth in the order that I thought them is often a task I fail at. They don’t come out in the right order. I think this is because I think of two ways to say something and combine the two ways together in one sentence. I also get a blank half way through a sentence that I often spend a lot of time quickly trying to remember what I thought of a few seconds ago and grabbing any bunch of words that come to mind and make my best attempt to form a sentence out of them.

However, my friend Patrick seems to be the complete opposite of that. He’s a musician, a bass player that I’ve recently met after years of taking photos of bands he’s been in. I was in awe of his ability to keep a conversation going but staying relevant to the subject. I wanted to emulate that but at the same time it’s my impulsive mouth that makes me say anything at all. Sure, those words can often embarrass me or unknowingly offend others and often make me feel stupid, but it’s my thing. However, I’ve been noticing that I am holding my tongue more in an attempt to stay relevant. Pat though is a really nice guy and despite my social awkwardness which can lead to a lot of impatience by people or have them making fun of me for stumbling, he remains patient and tries to help me get around my little handicap.

Even though I’m still developing my social skills I’ve learned a lot and have a high amount of empathy for an autistic person and even find myself mentally telling non-autistic people to think about how others feel or will respond to the way they’ve said something. It seems these days with social media being such a huge part of people’s lives that they’ve forgotten the very first thing I learned in my social skills training: not everyone will agree with you or have the same interests. Psychologists call it having a poor theory of mind or mind blindness when you fail to understand this. I remember when I struggled to keep thinking of others as separate individuals from me with their own likes, hates and wants, and their own experiences which help shape their personalities.

Still, most people seem to have adequate enough social skills to think they don’t need any further help and still they look at those who struggle socially with impatience. The best thing you can do for someone who is struggling to speak is be patient, not assume you know what they are going to say or finish their sentences for them. We don’t all have the same social ability and the person struggling is often very frustrated at themselves. It’s not uncommon for the more introverted person to hold something against an extrovert who replies before they’ve even finished talking or repeats their words to other people. To them it’s very rude. As for rudeness, sometimes those with poor social skills can say something that might be interpreted as rude but often they’ve just failed to realize it would come across this way. If you keep this in mind and not respond with anger you can probably avoid confrontation and the person will not become depressed over their mistake. Having poor social skills leads to a lot of anxiety and depression and these two disorders really interfere with developing new social skills.

My mood disorder gets in the way of me developing socially. Sometimes I get too hyper and impulsive and slightly delusional to apply what I learned when I was in a more euthymic state, and my depressed and anxious states lead to a lot of self-doubt and negative social scripting, which is thinking of worse possible outcomes in a social situation. Usually though, I use social scripting to help me come up with subjects to use in a conversation and it actually does work.

I still get surprised when I hit a brick wall in my social skills, which happens when people act in ways that I don’t understand or I realize that despite all the years I’ve put into developing new social skills I’m still not able to steer myself out of difficult situations. Usually, my answer to dealing with a heated dispute between me and a friend is to completely get them out of my life. Not everyone is happy with me using this approach but I’m at a loss to know how to work out a solution. So, much work is still left to do if I want to keep my friends. I applaud my friends for trying to keep our relationship intact, I just hope one day I can return the favour.

Videogames and Regression

I’ve categorized regression in autism into 3 severity types. Type 1 happens when an autistic person is under a lot of stress from a significant change in their environment that causes them a lot of distress which makes them regress into an earlier child-like state and they may preoccupy themselves with an activity that makes them feel safe and comfortable, and returns them to a state of order in an otherwise chaotic situation.

Type 2 is what I have dubbed ‘The Second Regression’ in the past which is a more serious and long term form of regression. It’s usually referred to as cognitive regression or a shutdown. Shutdowns in autism have their own terminology and have their own spectrum of severity and it’s something I won’t get into now because it will just deviate from the original point of me writing this post. This Type 2 regression usually happens when an autistic person pushes themselves beyond their own limitations and can result in a loss of developed skills. Since doctors don’t know much about this condition and even go as far to say it’s psychological hysteria they can’t do a lot in terms of treatment. Instead, the autistic person must re-learn all these skills over again. When their family members notice they’re a bit slower in communicating their thoughts, social understanding and basic skills they may have no choice but provide some accommodations for their struggling child, sibling or spouse.

Type 3 usually happens when a baby is 18 to 20 months of age and begins to show symptoms of autism for the first time. They may have already developed speech and hit their milestones on time or early but for reasons not clear to scientists their skills begin to regress.

I’ve gone through Type 2 regression around four times so I’m hesitant to push myself when I begin to feel anxious. I don’t ever want to feel helpless and dependent on others while trying to re-learn lost social and life skills which I’m all always trying to build more of. Recently though I experienced Type 1 regression for maybe only the second time. They may have been more but I feel so socially developed for an autistic person that this little set back really made a huge impact on my self-confidence.

It all started when I found out that my house’s lease was being terminated and my sister whom I was living with at the time had previously been looking for somewhere else to move, which I protested. But then we had no choice. We had to move. It probably took a week for my sister and housemate to agree to move to Katoomba but I resisted. I tried to find someone else to live with on Flatmates.com but after a few weeks of not really finding anything suitable for me and my small cat Lyra (not many places allowed pets) I started to lose confidence that I could move in with strangers at all. Eventually, I came around to the Katoomba idea but I was still anxious about it.

I was working in Western Sydney and I knew I had to stop working there days before moving to Katoomba. I’m also a gamer and around this time Quantum Break, a game I had been waiting years to come out finally did and I become wholly absorbed into the world of Jack Joyce, the main protagonist. I searched through every nook and cranny of that game world to uncover more of the story. It had become my new reality. Yes, time was breaking down and I had these cool time powers and Dominic Monaghan was my brother. There were these moments in the game called stutters and I guess I played the game for so long I started to see them outside of the game. There were TV episodes in between the levels or acts and I felt like I lived through every character in the show and game. When I was half-way through the game I started to take days off work just to play it, even after my flu symptoms started to dissipate. Then it was choosing playing that game instead of seeing Craig Nicholl’s from The Vines play a solo show at Newtown Social Club. I’m a live band photographer and go to quite a lot of gigs and consider myself part of the Australian live music scene so not going was even a shock to me. Craig also has Asperger’s syndrome so he’s probably the only person in the music scene I can relate to. My friend wasn’t impressed that I didn’t go to that gig. In truth I didn’t want to go out and risk getting sick again. I had already missed so many days of work it was impossible to catch up without risking a collapse. I’ve had chronic fatigue since I was 13 and last time I pushed myself I became close to passing out. It happened after I went to shoot a gig, spent two days editing the photos and went straight back to another gig. When things like that happen to me I become anxious about it ever happening again.

Another reason I was hesitant to go to gigs might have had something to do with feeling anxious and even suicidal at previous gigs I went to alone. The feelings lasted as long as I was alone and didn’t talk to the band members if I didn’t know them. Fortunately, at those gigs I did know some band members. These feelings were new and unusual and they may have also had something to do with my stress over moving.

When I was close to finishing Quantum Break a free Destiny update came out so I gave the game another chance and I enjoyed it a lot more. I was one of those year 1 players who got sick of it and vowed never to play again, but the loot and upgrading points were very rewarding so I stayed. I entered into a new reality, a futuristic dystopian world in which I and other players were the last hope of humanity’s survival.  I became my Titan subclass throwing fiery hammers, ground pounding groups of enemies into oblivion or helping my team mates out by erecting a void shield. I dominated the Crucible (multiplayer) for a short while employing underhanded tactics to defeat my enemies. I played for full days to slowly upgrade my light level so I could play the final challenge. But it was all cut short when Starfox Zero came out and packed up my Xbox One and set up my Wii U. Three days later I wanted to throw that game and Wii U into the Sun. I also played a bit of Alan Wake: American Nightmare on my Xbox One in between Quantum Break and Destiny or whenever I couldn’t connect to Xbox Live.

Next was Ratchet and Clank I think so I set up my PS4 and packed up my Xbox One. Around this time I was beginning to suspect that I had grown some sort of a psychological dependence on playing videogames. I would never buy so many games in a matter of weeks. Usually, I would play a videogame to distract myself from depressed and suicidal thoughts. So, it was a form of therapy for me. I discovered this when I was anxious about going to a gig and I found playing Batman: Arkham City calmed me down. Since then, playing videogames works better than any psychiatrist’s advice ever has.

Not only did I have a psychological dependence to play videogames I also stopped hanging out with groups of people. People would come over to the house all the time and there was even a birthday party but I just didn’t care about socialising. It may have just been another way for me to cope with my stress. But in my head I came to the decision that I just didn’t want to do it anymore.

I did want to go to Good Game Live though but I felt nervous about meeting fans of Good Game Pocket show, the ‘Pocketeers.’ I’m not really good at meeting people and becoming friends. I’ve been bullied and trolled by people who were meant to be my friends so I was hesitant to go. When I sort of told one of my friends she made it sound like I wasn’t making an effort. We had a big row, a big big one. She told me I was making excuses even for my PTSD and this is from someone who has a mental illness themselves. Emotionally I couldn’t deal with it and I didn’t know how to handle the situation so I did what I always do when I hit a social brick wall – I tried to get her out of my life but she kept trying. Through my sister I realized she missed me and it was something that never occurred to me. I don’t often miss people. I can spend 6 months without seeing people and as long as I’m preoccupied with an interest it’s enough for me. I did try to make an effort to hang out though. I was going to go to a gig in her town and asked to stay the night but I was never really given an answer. I deliberately didn’t go to two gigs I knew she’d be at. Although, I had no real motivation to go. This was You Am I and Davey Lane – they were usually unmissable gigs but I just kept playing Ratchet and Clank and Modern Combat 5.

It took about a week but things are good between me and my friend again. I think. I’m not very good at keeping friends.

Then Uncharted 4 was released and yep I bought it day one. Now I was Nathan Drake, a thief/ adventurer in search of pirate treasure. Once again I was completely absorbed into the story and became so accustomed to the combat it began to feel like muscle memory. I would shoot one bad guy, take his gun, grapple to a rope, swing on that rope to another ledge, shoot another bad guy while still swinging in the air, land on him and take his gun and continue the process until the area was cleared of enemies. I felt so athletic while playing it even though I had barely gotten up and gone for a walk. I never wanted to stop playing it. I wanted to stay in that world forever.

I might have spent between 6-10 hours playing it daily and completed it in four days. I’m not the best player but I thoroughly enjoyed my time playing as Nathan Drake. I enjoyed the cinematic driven story so much that when I played DOOM on my Xbox One it felt boring but I eventually got comfortable with it. It was hard to feel like I was in the DOOM world so I tried to read up as much of the lore as I could but the days til I moved were getting shorter and I had to stop playing DOOM and pack my Xbox One into a moving box. I also really wanted to see Dallas Crane and I felt I had to completely put away my game console so I could be sure I could go to that show. I put N.O.V.A 3 on my phone and played it before the show. The A.I that was supposed to help me was buggy AF though so I eventually gave up on it. But I am glad I went to the Dallas Crane gig. I got to hang out with the guys, talk mostly about videogames with the drummer Steve and take some good photos despite having no confidence of my skills after months off photographing bands. I even forgot the differences between fast and slow shutter speeds.

Then I was going to go see Olympia two or three days later, so I hastily edited the Dallas Crane photos, ignored the support act photos and was off to another gig. Then some more symptoms showed up. I completely lost my appetite yet still felt hungry; I just didn’t want to eat. The kitchen was a mess because of the move so that may have been one reason why I couldn’t eat.  I ended up surviving on Shapes and crackers. My sister was convinced that Olympia went to our church when we were kids. I didn’t really believe her.

The night of the Olympia gig I had some anxiety about getting in at all because my sister had my ticket but it passed and I met up with my sister (not the one I lived with) and we got together to excitedly talk about a house that we were approved to rent. I ate a meal for the first time in days and I was looking forward to seeing my friend Pat at the gig who plays bass in Olympia.

I was distracted and unfocused at the gig. Maybe it was because I kept talking to my sister when I’d usually be alone and hyperfocused on what was happening on stage. I yet again had zero confidence in my ability to take photos but I eventually remembered what a slow shutter speed does to photos taken in low light, so I corrected that. It was a good night. I got to talk to Pat and meet Olympia and my sister asked her if she was the same person that went to our church as kids, and she was and it was kind of strange but nice. I was an extremely quiet and weird child and I’m so different now that it felt good that someone knew me back then. It’s like that child actually did exist. I didn’t really have much to talk about because I had been playing videogames obsessively for the past month and being around a 35 to 40 something year old crowd I didn’t want to make myself seem any younger by mentioning that.

So, despite all the stress and weird regressive symptoms and anxiety about everything and near starvation I still had a good time and took some great photos and just got to do what I had been missing out on for months. It was enough for me to want to do it again. A couple of weeks ago I had feelings of giving up on my photography because I just couldn’t get out to the shows, and also those suicidal feelings. Every now and then I think about giving up on my band photography anyway.

I hastily edited my photos of Olympia too because I planned on seeing The Matches that night. The Matches were amazing and energetic as usual but I didn’t feel like I belonged in that scene anymore. And that was once my scene. There was a time when everyone knew about my photography and at least two people at that gig knew me. I met the guitarist of The Matches but it didn’t go as great as it did at Olympia.

I’m in my new house now and I haven’t played a video game for about two weeks, maybe more. I’ve been watching a whole lot of Good Game Pocket and following gaming news. I’m waiting for a gaming monitor to be delivered and DOOM is sitting on a desk of dresser drawers in the lounge room waiting to be finished. I don’t think I’ll become dependent on videogames again, not to the extent I was. I think it all had to do with the stress I was feeling over moving. Sure, I’m going to be picking up a controller when I feel deeply depressed or even anxious but I don’t think I’ll choose it over going to a gig. I’ve been trying to work on my social skills – AGAIN! Sorry, but this is like the fifth time. I pretty much know what to say to people but don’t say it. It’s going to take time and practice but it will happen. The nervous impulsive speaker will return.

I still enjoyed my time playing videogames. I felt like a gamer for the first time. I’m not saying they’re as broken as I was. No, they seem to be able to balance playing games with work and socialising in a way that I never could. I’ll still continue to play games but I won’t have much money to buy them day one or pre-order collector editions ever again. They’re still the best therapy I can ever get and the only way I can make friends, outside of the music scene of course.

Autism and the Videogame Community

April is Autism Awareness Month and if I’m lucky today is the 2nd of April: Autism Awareness Day. I’m taking this time to not just write one but a couple of posts dealing with issues faced by those with autism, instead of my usual spotlight on myself and talking about what autism is like for me. It’s my 8th Autism Awareness Month so talking about that stuff does get tiresome. The first post will be about autistic people in the videogame community and the second about the state of the autism community and its many divisions within that community.

Recently I made the decision to quit playing in multiplayer worlds such as MMOs and spending a long time in game forums. I felt like it wasn’t a very supportive environment and not an ideal place for someone still learning social skills and dealing with serious mental health problems. I was let down by the fact that the game community and most social online communities are not really about making friends and supporting each other. I’m not saying it should change. I would love it to change but I’m not pushing anything here. It’s just not for me and I don’t think it’s for people with similar issues.

That said, I’m still going to play the DOOM beta later and if I run into the same obstacles I will try my best to get through it. Obstacles, you say? Yes, these obstacles are often the mindset other gamers have when they are looking to team up with another person. They expect you to already know what to do and be just as good as they are. If not they will accuse you of not trying hard enough, even being lazy. They just don’t see that two people may not be alike. It’s actually very autistic. OK, I deserve the abuse I’ll get from saying that. But it’s very true. I had to learn all throughout my early adult life to remember to think of others and even had to pick up in other people how to empathise. So, it’s something I’m always trying to keep in mind, yet others seem to be losing this innate ability.

I don’t play as much as other people. I have many other interests, all of which will individually take my complete focus for weeks and months on end. I can’t really commit to two at a time. At the moment I seem to be trying to juggle writing with my band photography with playing video games with reading comic books so I’m not putting much time on any one thing at all, so I haven’t got that intense attention to detail autistic people are famous for. I expect some abuse thrown at me from playing DOOM because I haven’t played anything like DOOM for years. I’m off my game, as they say.

What I’m really trying to encourage here in my speedy jumpy-brain ADHD writing style is that I wish gamers would open their minds up to the fact that not everyone who is playing with or against them is exactly like them. You never know what kind of stress someone is under or what their challenges are. Most of you don’t care but I believe there’s a minority of people who will still give consideration to a minority of people once they’re made aware of it.

The reason I play video games at all has a lot to do with my poor performance playing platform games on SEGA, PC and Nintendo as a kid and proving to myself that I’ve gotten better since. I have. I use my brain much more now than when I was a kid. The second reason is because back when I wasn’t even playing games but was sorta interested in them thanks to the invention of mobile gaming that I started to research game development to help me write about VR technology in a science fiction novel I was writing. Funny thing was I didn’t actually know another company was creating the same type of technology under the label VR Roaming. Anyway, tangent. Point is my research turned into playing the games and living in the communities and then I got so absorbed into the playing side of the research, I became a gamer myself. Then when I was going through a lot of anxiety over going to see live bands cause of a PTSD issue I found that playing Batman: Arkham City calmed these nerves and maybe beating the hell out of bad guys felt kind of empowering. So, when I was struggling to deal with crippling depression and suicidal thoughts (oops, trigger warning) I would make myself play a game at the very beginning of my depression and the feelings would be alleviated and I wouldn’t go on online rants and lose all my friends in the process.

Now the fact that I was in these mental states while gaming meant any slight abuse hurled at me was deeply felt as my mind wasn’t even seeing the world properly – both depression and anxiety put thoughts in your mind that often do not reflect your current situation, but are both paranoid and delusional, in a mild non-psychosis sense. You’re self-critical, sometimes hating everything about you and losing hope about your future. You start to hate everyone and everything around you too. What were once little annoyances are now the most irritating things in the world. And you believe them, you always believe them. It doesn’t matter how many times you try and put positive thoughts in place of them, they will always sneak their way back in. At least for a little while. Dealing with toxic people in the gaming community just becomes more of a burden when in that state of mind.

Now back to autism. I believe it’s tough being an autistic gamer because our symptoms may lead to playing badly, though sometimes an autistic gamer that has gaming as a special interest can have the upper hand. The old term used by psychologists was ‘little professor’ – it was the fact that a child with Asperger’s or high functioning autism (they’re basically the same thing) could become interested in something and soak that knowledge, mostly facts, up like a sponge and when they talked about it they sounded like an expert in the field. People with autism can teach themselves to do anything this way. I used to read a lot about physics, especially astronomy and spit out facts I memorised here and there and people thought I was a genius. I understood what I was saying but I’m far from a genius. We have a high attention to detail so can pick up on things people may miss. Try to pick up an object with a lot of detail with it and try to pick off every little detail on it. This is what we do naturally. It’s actually a good coping mechanism. When we look at the whole picture (environment) we’re easily overwhelmed. Most of us have extremely sensitive senses (take note Bungie) and need to detach from the world and just focus on one thing. As a result we memorise all the details. I’m just saying, a player like that on your team could be an asset.

We’re also very good problem solvers. Despite thinking mostly linearly, like it says in the diagnostic criteria, some of us can think of unconventional ways to solve a problem. A big problem I have with video games is that there’s usually just one way to play the game. I was once doing a raid in Destiny playing the Dark Below DLC. You have to take down a Hive Prince called Crota. We all pretty much knew the drill. All six of us have to touch a stone, then you gotta fight the Hive minions and there’s just a very set way to go on from there. But there was this one time where Bungie servers were being little buttholes and glitching the whole raid up, so we were impatient to finish the game so we broke protocol. It was only a slight deviation from the plan but we defeated Crota a lot faster than we usually would. So, maybe having a less than conventional member on the team could not only make a boring rinse and repeat raid more interesting but may lead to quicker victories. And I just think if there were at least 3 or 4 possible ways to complete a level then it would make for much more exciting game play. I really like emergent game play where you take over some dialogue decisions and it affects the outcome of the game. Developers need to make the way players actually get around the environment and the decisions they make within be as varied as the many choices of dialogue in story driven game play.

Autistic people may be able to learn a lot of information quickly and rehash that knowledge as though they’ve been into that subject for ten years when really it’s been two days, they may see other things people miss and they may want to shake up the linear way in which you play games, but there are also some cons. One of the most noticeable shortcomings about someone with autism is their poorly developed social skills. I’m here to elaborate on that. When talking to someone with autism it’s best to talk in a fairly straight forward manner and leave the phrases and idioms at home. They also cannot process too much information at once so it needs to be done in step by step intervals. For me, I don’t like too much banter while in a raid. I need to be able to focus on the mission at hand and really focus on the team leader’s directions. I simply cannot hear two different types of dialogue at once. I always have to pause a TV show when someone comes into the room talking. I can no longer follow what’s going on TV. I feel so frustrated I feel like throwing the remote at the people talking, but I know they don’t understand why I can’t hear the TV. They can filter out unwanted noise and focus on one thing. I and most people with autism, can’t. And always remember, people with autism cannot deal with change. A very helpful and awesome person will help them slowly transition to change by revealing that something different is going to happen and a most unhelpful person will just drop that information 2 seconds before it happens. The difference is a calm and contended person eager to do some team death match or a very angry person who is going to rage quit anyway, and blame you for it. Might rant on Facebook about it. Maybe.

One thing to keep in mind is people with autism just want to be understood but still be treated like everyone else. We don’t want pity. We’ve been handled with kid gloves for most of our lives and to be treated that way in your teens or adulthood is degrading and patronising. There has to be a balance between not being an ableist coont and not treating us like we’re in damn kindergarten.

I think one of the big problems facing people with autism and is probably the reason why they remain unicorns to me (hard to find in the gaming community) is because of the fact that autism is used as an insult throughout the gaming community and social media as a whole. Now, I’m not going to tell those people to stop. I know how much gamers hate having to change something about themselves to seem less offensive. I just don’t think autism should be used as an insult. For one, there’s nothing in the diagnostic criteria that says people with autism have an intellectual disability. Anyone who would make fun of someone with an intellectual disability have voided their humanity and are not subject to the same rights as declared in the United Nations Declaration on Human Rights in my book anyway. They’re monsters and not worthy of a second thought. Hmm. I may be compartmentalising here..eh. People with autism are not mentally handicapped; it just co-exists in those with severe autism. In the psychological world we call that co-morbid. Like my ADHD. The symptoms of autism are to me personally a set of behaviors developed within the brain as its own way to cope with the chaotic world that the differently connected neural circuits within the autistic brain cannot cope with. But go ahead and think of autistic people as all retarded. It just shows how little you really know about the condition. It’s probably one of the very few mental disorders that give special skills within the frustrating life experience limiting symptoms too.

There are other autistic gamers out there who face the same issues as I do in the online community. I can’t be the only one. I wish to find them and give us a safe place to exist in the game community. If you’re on Xbox One send REDMENACE85 a message. If you’re a troll you will be ignored, reported to Microsoft and name and shamed by the international autism community. If I ever get back into Destiny I’ll make a clan just for us.

Nightmares Coming True: Fear of Change in Autism

I’ll explain that title later.

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

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

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

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

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

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

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

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

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

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

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

And now I’m depressed. Again.

2015: The Year of Change

Usually when you hear me talk about change it’s in defiance of it but this time it’s been more about embracing it. More than that. Change has happened in my life and within me personally that I barely even knew it was happening.
First, I decided to start a photography course which I at times have doubts that I could ever finish after I start another subject but I work out ways to make it happen. I’ve learned a lot from this course and I use it my general and concert photography. General is anything from self-portraits to photos of animals to photos of children’s birthday parties. I now have the passion to take photos again. I’m not really sure where it went all those years before to be honest. I have had to overcome anxiety that kept me from going to concerts and still have to face a type of agoraphobia that developed in me after a traumatic event. That was years ago though and I now feel ready to move on.
Secondly, with my 30th birthday looming near I decided I should probably go find my some work. The government also requires it of me despite being on a disability pension. The hardest part for me would be overcoming my physical weaknesses. I have hypoglycemia and so need to eat a little every few hours. I also have chronic fatigue and can use up my energy in just a matter of hours. I’m sure there’s a nice employer out there who can work around these issues. I have a lot to offer and not even Asperger’s syndrome, ADHD or mood disorders can hold me back.
Third and last and probably most important I’ve become a committed Christian again. I don’t think Christian is the right word but I believe in God as I have from a young age and follow both early Hebrew traditions and the New Testament. I have a calling on my life that I’ve felt since a very young age but it was never revealed to me until now. I will not say too much since I don’t want to scare you away but I’m very serious and committed to what I have to do and am even creating artworks to share this message, and those artworks will be on another blog. People can mock me. People can try to convince me I’m believing in fairy tales but it won’t do them any good. I’m a rock. Agreeing with people just so they don’t feel uncomfortable around me doesn’t matter to me, the only thing that matters to me is what I can do to secure a future in the next life.
So, I’m finally getting back into my art. I’m a gifted artist (or just quick to pick it up) but have never had any formal education. So I have a lot of self-learning to do to reach these artistic goals I have set in place.
I still want to be a writer of some kind and have a story in the back of my mind. Instead of being science fiction it’s more to help autism awareness. I recently saw a BBC miniseries called The Politician’s Husband and while the depiction of a child with Asperger’s was truthful it focused too much on the negative. I believe showing the negative is important but as someone who has lived that child’s life I can tell you it does get better. In fact, things might be able to get better for an autistic child when they are still a child. It’s more about teaching them life skills without trying to make them ‘normal’ i.e allowing them to have interests and their own coping strategies most commonly referred to as ‘symptomatic behaviour.’ So, that’s the book/screenplay I wish to write.

I don’t make myself ridiculous new year’s resolutions to keep, instead I’m just going to launch straight into a healthy diet and exercise routine. I like feeling fit and it does help give me prolonged concentration and just puts me in an all round happier mood.

As it’s now the first day of 2016 I can begin seeing these goals through. I’ve got plenty to keep me busy. I’m now a photographer for CargoArt Magazine which could mean my photographs can now be printed. I’ll continue to do my photography course and just keep on taking photos in my spare time or for my band photography. I look for jobs daily now, usually anything that involves using a camera. I’ll have to start learning how to draw and paint those things I wish to create on canvases. I’m going to be reading plenty of religious books, including The Bible every Saturday in my own little live-in Church which is my bedroom and the only Church I can trust. I’m already exercising and eating healthily too.

It all seems to be working out pretty well for me – the planning stages at least. I’ll still have plenty of downtime to rest and recharge. So that’s that then. It will be a great year because everyday I will strive to get better; healthier, fitter, mindful, creative and righteous. Now I’m not trying to sound better than everyone – far from it. I mean others are allowed to sin. I have to watch everything I say, do and think very carefully. I just want to be a good person. Good in the eyes of God and mentally sound and say goodbye to physical weakness.

Shanti