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

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.

What is Autism Acceptance Month? (Long Post)

This month my blog is going to play host to a wide range of posts focused solely on not just raising autism awareness for World Autism Awareness Month but also explaining why accepting autistic people is important too.

I’m a bit late to join the acceptance cause because I’ve been trying to rationalise my decision to be or not be that way. You see, I’m a person who has built the foundation of my whole world view solely out of facts, and I couldn’t get past the notion that seeing autism as something more positive meant that autism awareness would go backwards to the little awareness there was in the 90s and when many children, including myself, had their autistic symptoms overlooked. I kept repeating the same thing to people ‘if autism is not a disorder it would not even exist. You wouldn’t have a reason for why you are different and not be a part of a community of people who relate to your symptoms and you would not be able to share your similar experiences with them.’

I thought I was right in having this view because no one argued against it, but then I learned that autism acceptance doesn’t mean that we should stop treating autism. It’s all for that, but people who support acceptance don’t want autism separated from them, they don’t want it cured and they don’t want to be looked down at by society just because they have autism. They don’t want to be merely tolerated but accepted as a regular member of society, and they want people to keep in mind that autism is a real disability and needs to be taken seriously, even though people may seem on the outside to be functioning just as well as everyone else; it’s an internal struggle of anxiety over pressures put on them from other people who can’t understand they see and do things differently, confusion over what is required from them from those people, and heightened sensory processes (though they can also have under sensitivity to some senses). It’s not an excuse to be lazy or rude or for people to overlook inappropriate behaviours. It’s a neurological difference, a different way of processing and perceiving the environment and often a failure to connect to others in the same way two non-autistic individuals could connect with each other.

As for me I want to be allowed to be myself. I came into this world a child with no real desire to socialise and through pressures from parents, siblings and teachers I had decided to change because it seemed the normal thing to do. Though I’ve had some great experiences socialising I’ve also left a social encounter feeling stupid, angry, insulted and just confused, and even suicidal. It feels as though I was never meant to be social. I feel like I’m more of an inventor or author and people are my audience. I’m not meant to chit chat or come up with 1000 new compliments to tell a person so they will like me and in return give me at least half as many new compliments.

I’m meant to spend my days alone being inspired by my narrow special interests that I’m extremely passionate about that help me come up with ideas of my own for an art project, a new photographic gallery, another blog post, or more likely a science fiction story that helps to raise awareness about how society treats people who are different. I want to dedicate my time to books about science, or just a good escapist sci-fi story, philosophy or even just Marvel comic books. People think I can have all that and a social life but they are wrong – I cannot balance to the two. It will always be toward one extreme to the complete neglect of the other.

I don’t want people to call me a nerd as though it’s something I should be ashamed of. I don’t want my politeness to be seen as a weakness. I don’t want to be sucked into a world of memes, lolcats, and other forms of mediocrity you find on social networking sites. It took me a long time to realise that social networking websites are just like socialising. No one takes anything said seriously and it’s all for fun. Well, I don’t want to do that from the comfort of my own home. I want to discuss big ideas and be inspired by someone else’s ideas. I want to do that when I’m talking to someone face to face too but that’s not always possible, so I would rather talk about funny cat pictures offline rather than online.

I find the whole social world to be full of a lot of deceit. I can do the social niceties but why must we hide when we aren’t feeling so great? Many times when someone asked how I was I could have said I was depressed, and sometimes I have. The only point to socialising with people is about getting a closer bond to them and sometimes I don’t want that bond, sometimes I just want answers to questions and to load off a whole lot facts on people. Yes, there are times when I do desire talking people for the same reasons they do and can do so comfortably but then there are times when I feel I’m hiding myself from people if I can’t be myself and just talk about those things I’m really passionate about.

Now just because I say this and feel this way doesn’t mean I’m not going to be social or even play the social game. Sometimes I think it’s needed so we don’t all end up at each other’s throats. I can balance being an honest yet polite person…most of the time. Occasionally I end up saying something offensive without even realising it. I can jump from being under empathic to over empathic, again depending on my moods and my environment. When around people I’m usually overwhelmed by the closeness off them, their voices, the light, background noise and the sudden changes in my emotions after every word they say, so I don’t always get a firm understanding of their feelings.

At times when socialising people have shut me down when I try to talk about my special interests which can be the only subject I’m capable of knowing a lot about and thus capable of talking about at length and with any passion at all. These days I’m better than most with an autism spectrum disorder at briefly talking about a wide range of subjects, but it leaves me feeling empty.

I’m perfectly fine being on my own and going days without talking to people and sometimes I want to be around people more, but on my own terms. And I don’t want to be made to feel like I’m doing something wrong when I choose to be quiet.

I do have a small group of friends who I love but I’m always saying, thinking or feeling things that will risk that friendship and it when it comes to drama I don’t know how to handle it so go into avoidance mode. I basically only have the basic set of social skills I have now because I memorised them and whenever something happens that requires more social awareness and experience of handling relationship issues I hit a brick wall. I’ve got nothing so I basically say ‘I can’t do this, I haven’t got the social skills required for this’ and leave.

But I still have had a lot of fun times with friends and I’ve got a lot of fond memories, so there is always that small group of people that I will always hang out with, depending on my current mental state – and it’s more than being autistic that gets in the way of having a good time with them. I always find that having similar interests to people makes me more capable of saying anything to them and the likelihood of us becoming friends more. Mostly we all like the same music, though only one has a 90% music compatibility rating with me. That same person is just as geeky as me too.

There are some other strong traits of autism too. I function better or at all when I have a plan put in place for the tasks I do in a day or when going to an event, like a family picnic or seeing a live band. I have a natural ability to organise which comes in handy to control symptoms of ADHD and bipolar. I feel like I have more control over my mind too. I can blow up emotionally about little annoyances but I can quickly talk my way out of them and into a more rational state of mind. Is it really important to make such a big deal over this thing? It’s not usually and I just need to calm myself down and distract my mind, usually by choosing to spend time on one of many interests.

I have a close attention to detail which helps me as an impatient artist and band photographer. My best shots are close-ups of the singer’s face and capturing an emotional moment in their eyes, focusing on finger movements of the guitar players and patiently waiting for those ‘rock moves’ that get me such high praise. Drummer photos, usually taken from back, are always a challenge which is why I feel really satisfied when a nail that perfect shot of them. And I like to use real close-up lenses for them too.

I can detach my emotions from a situation when I know they can get out of control. This kind of gives me a flat affect about being told most bad news and I’ll be at loss about how I should react, except when it comes to bad news about animals. I feel like I’m more emotionally connected to animals and I’ve differentiated how I see my pets verse how non-autistic people see their pets. To them their dog or cat is like their child, to me they are my pals. I tell people my dog Bear and I run in the same pack. Sometimes I talk about him as though he is my Lord and I his servant. I even gave him a ridiculous long royal name: Lord Bertrand Ernesto Augustus Roxonbury. Meanwhile my cat Bluesy is my ‘roomie,’ Jazz is a grandma and Lyra, well, OK she is my baby but only because of her perpetual kitten look. She also looks like a rare endangered Australian species: a bush tailed possum mixed with a sugar glider and a Persian cat.

I think this ability to put logical problem solving skills before emotions is a great and useful trait to have. I still have a severe and at time debilitating anxiety disorder but I am able to eventually overcome those symptoms and think of a solution to my predicament at the time.

So, to me Autism Acceptance Month or Decade or Century is about accepting others who are different and allowing them to be that way. It shouldn’t matter if someone is introverted, not wanting to always be social or even wanting it at all. If someone is able to better function with routines and making repetitive movements with their hands, fingers, head, legs – then we should let them. As long as they are not putting anyone or themselves in danger and it’s not extremely annoying, then I can’t see why they should change. They shouldn’t be made to feel their behaviour is odd and therefore not normal. I’m a geek and proud. I also have what would seem immature interests and act far younger than my age. I’m not even talking about being 28 and acting like I’m 16. I’m talking about acting as young as 6 sometimes. It makes me take life less seriously without having to take a chemical to have such an experience.

Autism Acceptance Month is also for those individuals on the autism spectrum and their families who want to accept it. Not all can. Some people have children with severely debilitating autism who require around the clock care, and it’s up to those families to decide how they deal with them. I’m not even going to suggest anything. I have a lack of experience in that area and so this post isn’t directed at them. I do know people with severe autism who still don’t want to be cured and still don’t want to be seen as broken and inferior. I know one parent of a severely autistic boy in particular who has been very strong ever since he was diagnosed and didn’t blame anyone, didn’t try to take away his autism and just loved him for who he was. How someone chooses to raise their own autistic child is their own choice and I’m not going to get in the way of that or say they’re doing it wrong because I wouldn’t even know where to start with raising a child. All parents have a tough job but parents of autistic children have a real challenge on their hands. That’s a fact. And I’m sure even the parents who want to cure their kids are doing it out of love.

So, hopefully I’ve outlined what autism acceptance is all about and why it is important to see people with autism as not separate from their autism. They’ve had it since before birth or so early in age that it’s been with them for most of their lives. It has shaped who they are and every new experience is continually shaped by their differently developed brain. It has strengths along with weaknesses. Look at Jacob Barnett, teenage physicist or Temple Grandin; born severely autistic but through ABA therapy she has developed not just into an independent woman but as a spokesperson for the autism community teaching parents and other non-autistic people of the inner experience of the autistic mind, and she’s pretty spot on, although her visual mind is far more advanced than mine. And you know what she says? We are inventors and that the world needs us. Now, I’m one of the few autistic people that will still give credit to non-autistic ingenuity but there is definitely some truth in what she is saying. We with autism can get so passionate about an idea we become obsessed with it; we block out the world and all distractions and just get to work.