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

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.

Talkin’ Chronic Fatigue Syndrome

I’m going to take time to talk about something I should have been talking about all along, and not just to my adoring readers but family members and those people who handle my government disability payments. I’ve not talked about it because for a long time I thought I got a handle on it, even cured myself of it but now I know that’s not the case it’s still something that’s difficult to talk about because it makes me look weak.

This may come a surprise to many of my detractors (trolls) but I don’t want to look weak. It’s bad enough I almost pass out every couple of hours without eating, this is something that won’t go away every time I pop in a sweet glucose treat. I’m talking about chronic fatigue syndrome. It’s a condition where you only have small amounts of energy that gets used up fairly quickly, and once it is you are left exhausted, unable to carry on with the most basic of physical tasks.

In me personally, my mental energy becomes non-existent too. The cause seems to be from being bedridden for weeks or months on end. Think what a polio survivor had to go through. Now assholes will call this a first world problem but I tell you now if I lived in a third world country with this condition I’d surely die, and I often do imagine myself in less than desirable situations, harsher environments where I’d have to live off the land and try to cope with my many ailments, like primary dysmenorrhea – but’s neither here nor there. Men can look up what that word means.

But back on feeling weak, I hate it. I don’t want to feel pitied. I’ve been pitied enough for my autism. Feeling pity really strikes a blow to my dignity. People can’t help it. They’ve grown up in a world where people with disabilities are looked at as hopeless, something to be pitied as though that makes us feel better. Nothing could be further from the truth.

So, it gets hard to reveal those things that do disable us for fear of being accused of making excuses or wanting pity, when all we really want is some understanding and maybe not being put in situations that make our conditions worse. If you know me you know I’m quite open about my crippling anxiety and my depression that has made me feel suicidal so many times I’ve lost count. Those two things also reveal a weakness in me, a difference. Yeah sure, there’s a meme that says people who deal with these things are actually strong of having survived them, but they drain you of your mental and physical energy. They make life harder to live. You live a less average life when you live with mental illness, or autism, or ADHD, or hypoglycemia, or chronic fatigue. And I got all those things. They stack up and weigh you down. I’ve also got epilepsy but I have a handle on that, mostly.

I’ve always been able to hide my chronic fatigue, to stay on top of it, as serious as it is it was never life threatening. That was until a few months ago when I felt like I was going to collapse. I could always avoid it, because I wasn’t doing too much. I could rest when I was tired and pick up from where I left things after I got that energy back. But working just 8 hours per week and going to a gig on the weekend plus spending a full two to three days editing and uploading photos is just too much for me. Doesn’t mean I’m still not doing those things. Stress and anxiety and the stress from depression can also speed up the process of a CFS crash and I’ve always got an abundance of that.

Time for a little background history on how I became so fatigued: when I was 13 years old I caught a cold, which I thought was glandular fever – turned out it was pneumonia. I spent 4 months off school which I only remember because my teacher angrily made me aware of it. It affected my grades and I was in remedial classes before that. My usual childhood energy had dissipated. I just didn’t feel like doing things anymore. I felt like I was robbed of a normal childhood; I was just coming out of years of being a selective mute which meant I didn’t talk at all in some environments – all of those places that were not my home. I didn’t do much talking at home either. By the time I was 15 I was talking a little bit more. Might have even ordered food on my own. I had no energy to do much though. I’m introverted too and we feel the energy drained from us in social situations, add CFS to this and I may as well just have fallen asleep in front of everyone. I remember I used to rest my head on my splayed out arms on the church lunch tables back in those days.

It took me many years to realise my lack of energy wasn’t just because I was a teenager or because I ate mostly junk food. It contributed but it wasn’t the main cause. In my mid 20s I started to eat healthy and exercise and felt some of that energy coming back. I thought all my issues with a lack of energy were put behind me. But that wasn’t the case. I just wasn’t doing enough.  I was put on Ritalin when I was 24 because of my ADHD so I began to do more; learning advanced math, physics, starting to write my own novels – the usual things. I was wasted after just one day, sometimes just a few hours while the pill was still working in me. Eventually, I had to stop taking Ritalin because it was actually making me manic. I should probably mention that I still have a mood disorder of sorts because I tend to bring up my symptoms a lot. After a year without Ritalin I started to go back to normal. What is normal for me; completely unfocused, unorganized, forgetful, introverted, lethargic, apathetic, emotionally reactive, and with limited energy reserves.

To the observer my energy seemed normal as long as I paced myself. A medication damaged brain meant sensory sensitivity and a deeper sense of when something was going wrong with my body, which meant I could stop myself before I became exhausted. But then the government decided I could do some work despite being on disability. My disability was severe anxiety. I had only briefly mentioned that I had chronic fatigue, and my anxiety is manageable at work (though I have about 3 different shifts in mood – mostly depression and hypomania) and it happens to be the kind of job I can slow down in and it probably only gets noticed by other employees who don’t say anything and when they do I just glare at them. I’m the only one allowed to have a lunch break because of my hypoglycemia. But once I exhaust all my energy balanced blood sugar levels don’t really make much of a difference.

I get angry when I have to work more days because of another condition that makes me bed ridden for about two to three days. OK, it’s severe period pain and it’s getting on my nerves. I’ve started to pop muscle relaxants like they’re tic tacs.  I feel like my employer is not keeping with the deal that I’m only supposed to work 8 hours per week. I can push it to 16 hours but I can just make it. Push just one more hour out of me and you’re going to have to call an ambulance.

And that’s what makes me feel weak. I have at least 3 conditions that make me feel physically weak. I can deal with having a differently wired brain, even mental illness. But physical weakness – it’s like having energy is like the only good thing I’ve got going for me (probably why I enjoy the mania) but it doesn’t last long. It’s nothing I can simply cure with healthy eating and exercise. I’ve tried that and I continue to do that. The cause to chronic fatigue is still a mystery to me. I can only guess that the brain sees that the body is inactive for a number of weeks, months and shuts it down to save half the energy, but there’s no releasing that full amount of energy ever again.

What a person with CFS really needs is for others around them to be understanding and acknowledge that it’s really happening. They need to allow the CFS sufferer to pace themselves and only do as much as they think they can do, and when they know they’re about to exceed that then they can stop for the day. Usually when I get tired from doing something I get anxiety about getting tired about doing that thing again. I always have to reassure myself that if I pace myself better I might not get tired again. Course, I always get tired. So, it’s a simple matter of letting myself know I’m not going to be tired forever. In this impulsive and fast paced impatient world there’s not many who are willing to slow the fuck down and realise not everyone is going to be capable of doing the same things as them at the speed at which they can do it. But chronic fatigue is a very real illness, even in someone who is at times impulsive and hyperactive. It’s just as impairing as back pain. Might not be as painful but when you’ve got zero energy you can’t even go to the toilet let alone clean one room in the house or work for just 10 minutes. But with understanding and patience CFS can be less of a burden on the sufferer, as long as they’re allowed to pace themselves.

Note: I actually did a bit more reading up about CFS after writing this whole post, so I’ve learned a few more things, like it’s tied to hormonal and blood sugar issues, even sensory sensitivity. Maybe one of these days I’ll write about it in a more sciency way, but right now I’m so tired. This post is just one of three I’m writing over the next two weeks too.

Here’s a good link to read in the meantime

 

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.

Breaking the Bonds of Overprotection

We hear it a lot these days how children are being wrapped up in cotton wool or about the helicopter parents who can always be seen hovering near them, structuring their day including their playtime and never looking away for a second. Child experts say that it’s creating a generation of adults being ill prepared for the challenges of the world.

Now imagine an autistic adult being treated like that. Oh sure, I hear you with your ‘but it’s understandable, they don’t understand enough about the world and do require extra help.’ I agree to a point. See I was that over protected child. Not long ago I felt like I needed it because being autistic I was behind many children my age but even those with special needs need to grow up and acquire skills to help them navigate throughout this world.

Those skills were not learned while I was young. I have this suspicion that I was just expected to just get it when I was old enough. Maybe I was to pick it up from my peers. When I left home at 25 to live with my sister I was suddenly thrown into independent living without having the slightest clue about what I was to do, so naturally I had a breakdown. In the autistic community we call them shutdowns, they are commonly known as nervous breakdowns. Triggered by extreme anxiety both the body and brain shutdown, slow down, as if one was recovering from an epileptic seizure but there is lasting damage to the brain and recently acquired skills are lost. It’s happened to me about three times. How I am still alive is beyond me and every time I have had to build up lost social skills and even had to learn how to take things less literally. But there have been changes that I have not overcome or don’t think I ever can; I’m less coordinated, my previously internal meltdowns are as loud as the planes that fly overhead my Inner West home and my emotional regulation is completely out of whack.

But still I go on. I feel like I’ve spent a lifetime on the disability pension. A few years ago I developed PTSD and every kind of anxiety you can think of, and probably those that are yet to be discovered. I have depression too but I can survive the most agonizing day of depression more than I can get through another panic attack. Both feel terrible but both I have to deal with in order to continue living. Sometimes I mean that literally.

I’ve overcome a lot between the ages of 26 to 29 and I’ve still got much more to overcome. The latest was being too afraid to go to a music venue after some helpful fellow thought it was a good idea to grab me by the arm and tell me to stop taking photos. I couldn’t stay out in the open after that so I went backstage and filled up on cans of beer from Darren Middleton and Guy Pearce’s rider. Yes, I was working with them that night and had every right taking photos of them. It was both the best and worst night of my life. Then I took about 3 months off taking photos of bands because of the panic attacks I had every time I tried to leave my house. One of my friends wasn’t happy about that, said I bailed on them one night while I was shaking uncontrollably on the floor, the door knob just feet away from me.

Media passes to concerts

It’s not always been that bad for me and there have been times where I’ve just wanted to go out and live a life as normally as I can, even get a job just to see that I can, but this is when various members of my family have reminded me that I wouldn’t be good at that job or I couldn’t cope with it. It’s not just about jobs but owning my own house or living in a share house, studying something like physics, script writing and even photography online (hint hint).

Yes, it happened to me recently about two courses I wanted to study. One was the most part-time course you could give a person that involved learning script writing at NIDA. I went through all my usual preparations at such a big change in my life. I budgeted my money, planned a good way to save more money so when the fee was taken out of my account I wouldn’t worry about going broke and starving to death (quite a common worry with me), and I even got familiar with my new bus route. Then I was told it wouldn’t be right for me, that I couldn’t handle it. I was heartbroken and the next person who told me the same thing got a rather agitated reaction from me. I even began to stutter and the words just wouldn’t form into sentences. That’s also a very common thing to happen with me.

One of these people, ok my sister, suggested I look for a TAFE course on script writing and photography and even though I was still upset they didn’t believe that I could manage myself in a short NIDA course I went along and looked up the courses. I actually got a phone call from Open Colleges when I put my interest into the Professional Script Writing course and had a chat about what I wanted to get out of the course, but it seemed my plan to get work after the course might not have been the best path to take. Then it was recommended to me to take a photography course, so I considered it. The next time I saw my sister she again said that it might not have been right for me. I wasn’t just heartbroken but depressed. My other sister that I yelled at the night before was already on board with the idea – yelling at someone really does make them try to take your point of view a bit more seriously. But still one sister didn’t think I could handle it.

Their concern was understandable (even though a few years ago they denied I had any medical or mental problems) but the worst thing you can say to an adult with autism is that they won’t be good enough. It’s funny that there was a time where I would have loved for people to take my impairments seriously and now that they do I want them to lay off. I might have difficulties but I’ve had them for almost 30 years, and I’ve developed new skills and overcame many obstacles just to get to a place where I finally feel ready to study those courses that will give me enough knowledge and confidence to launch my career, finally.

I’ve been unemployed for a very long time that I’m actually over doing nothing all day but playing video games or watching TV. There were some attempts at becoming the next best Science Fiction author but I stopped taking that medication and the mania is gone and now I realise that’s probably not the best way to write. I got a lot of encouragement for it then but people didn’t realise what was going on in my brain at the time and it wasn’t healthy. I went through a down period after that and people wondered why I was not pursuing the writing or the photography or anything. This was when people denied I had any problems, it was also when I almost OD’d on Ritalin.

Now they deny that I’ll be able to manage doing a full on course of study. It’s funny to me because they are pushing me in other ways. Take flying. I’m terrified of flying on planes. It’s not so much the flight that worries me, but the airport and the breaking of my routine and being away from the sanctuary that is my house and going to a place completely new and alien to me. In other words I’m scared of change. They tell me I’ll probably be ok, some even say I’ll get addicted to travel. But you know what? This Certificate in Digital Photography is me getting on a plane. If they think I’ll be ok flying to another country then they’ve got to let me take risks and do something they don’t think I’ll be able to manage.

about three times. How I am still alive is beyond me and every time I have had to build up lost social skills and even had to learn how to take things less literally. But there have been changes that I have not overcome or don’t think I ever can; I’m less coordinated, my previously internal meltdowns are as loud as the planes that fly overhead my Inner West home and my emotional regulation is completely out of whack.

Naturally Introverted

bluesyinroom
Recently I’ve come across a website called The Quiet Revolution, a site that has many helpful posts about how to live in this extroverted dominated world as an introverted person. It’s important to me to really embrace my introversion because for a long time I have been trying to really push it away and become a more outgoing person. I even have had it taken away by going on medication for my ADHD so now it’s important to me to really return to my more natural state of mind, who I was before all these medications started to interfere with my brain.

Firstly, let me start off by telling those of you who don’t know I’m also autistic and identify myself as a severe introvert because not do I only thrive in solitude but prefer it and can be very stubborn to come out of it. I seem to become more withdrawn around a group of people due to my sensory sensitivity and the fact that I often do not share the same interests as other people, and am rotten at small talk. Although, because of the dramatic change to my brain on Ritalin I was able to have time to really learn and practice social skills so these days I’m probably 30% better  than what I was before. I’ve become impulsive and use that impulsivity to help me start conversations with people. A conversation with an ADHD person does not last long though. It starts, derides, jumps to some other subject randomly and then wanders away. One autistic symptom I’ve managed to completely reduce is talking only about my interests and not notice when people weren’t interested. I wish I could have that back. My trick is now to surround myself around people who have the same interests as me.

Introversion is like my default programming and as I’ve mentioned I had it taken away when I went on Ritalin. I became extroverted and I still at times can become temporarily extroverted. I know what it’s like to want to seek anybody out to talk to or just be around them. Some nights at home alone were painful because I just wanted to hang out with people. For the most part though I can be alone for hours and not miss a single soul. In my current living arrangements I’m not always able to be alone so I really yearn for that moment when I am.

Lately though the extroverts have outnumbered the introverts in this house and I’ve kind of felt like I’ve got pressure on me to talk more and not just that – to change to what seems normal to them. Introverts may want people to change for the better but we can still be content if people just stay the same. If it’s really something that’s annoying us we can confront people about it but we really rather not. Remember, I am speaking from the perspective of an autistic introvert so not all will agree with my interpretation of an introvert.

Introverts and extroverts are almost like two different species and are each annoyed by each other’s differences, but we need to remember that extroverts can’t help being outgoing just like introverts can’t help being quiet and staying at home but that doesn’t mean that we should allow them to change us. Extroverts can seem like they’re trying to control you but you just need to let them know that you’re introverted and will stay that way. It’s who you are naturally and there’s nothing wrong with it.

Introverts can give just as much to society as extroverts can. We ought to tolerate each other’s differences more, because it those differences that make us interesting. If we were all outgoing and chatty I’m sure we’d get bored with nothing new happening and if we were all quiet and stayed at home then we’d never meet each other. And I’ve tried to make a quiet friend – it is very hard. The person did come off as disinterested to me and that’s how some people see shy and quiet people. I’ve probably been seen that way many times. Once a housemate’s son came over to the house and in greeting offered his hand but I didn’t shake it. I’m not used to such a thing so didn’t expect it and couldn’t just do it once I realised that was required of me.

These past three years I have been really pushing my social skills development and taking any opportunity to practice what I’ve learned on people, or just taken another opportunity to pick up some more tips from them. When I went out to see bands I would try and meet them after a show and spit out whatever words I could. There was one band member in particular that I was so desperate to meet and talk to but I never got the chance so I would always say ‘next time I will do it, I will push myself right out of my comfort zone just to do it.’ But now it doesn’t seem that important to me. Maybe it will happen and maybe it won’t – but who really cares? I’ve stopped obsessing about it and stopped trying to act as normal and social as him just so we could better get along. I hope no one is offended by my use of the word ‘normal’ – to me normal is average and average is boring, uninspired, unoriginal and other things I’m not. I still think that musician is pretty cool though.

For so long I have tried to go against the grain of who I naturally am. I’ve pushed this brain so hard to be good at maths, to play a musical instrument and other things that I just don’t have the skills for. But I do have other skills and so all my time will be spent on pursuing work in that area than in an area my brain really has no clue about or passion for. Even the social skills learning is starting to feel like a futile effort; for every new skill I learn there’s one other thing I’m confused by, or accidental offend people about or just had no idea of the existence of. Maybe I won’t push myself as hard and accept the fact that I am autistic and will always struggle in this way. As long as I try to be polite and helpful then people should understand I’m not using my autism as a crutch.

As for the extroverted part of me, yeah, I’ll embrace it when it comes as long as I remember who I am the majority of the time: a quiet but deep reflector who seems to accept things as they come but is not afraid to stand up for herself once in a while, especially when it comes to people trying to push me out of my shell. No, I quite like my shell. Leave me be.