Autism, Distrust of Doctors, and Mental Health Awareness Campaigns

Trigger warning: mentions suicide, too many times.

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

Such things like:

“because mental health is real.”

“it’s ok to not be ok.”

“it gets better.”

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

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

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

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

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

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

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

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

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

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This photograph is a trigger.

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

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

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

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

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

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

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

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

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

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

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

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

UPDATE:

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

xSpycraft

How Playing Destiny Helped Me Build Social Skills

Destiny is a futuristic first person shooter in its third year. It may have had a rough start and disappointing first year, but things are looking up with the addition of extra content in Year 2, Year 3 and promises from game developer Bungie for more.

So what is Destiny about anyway? I’m expecting the audience for this blog being a mix of gamer and non-gamer alike so I will stick with the non-Grimoire* version. What is that? As I expect people will scratch their heads at a number of terms used in this post I will be adding Destiny terminology at the end of it. For now here is the story so far:

In the future humans find a planetoid entity known as The Traveler, who then gives them knowledge which launches them into another Golden Age for technological advancement. But The Traveler has some enemies who have chased it across the galaxies all the way to Earth. The main enemy in this game is known as The Darkness*, made up of different alien races including The Fallen who invade Earth. The Traveler protects the Earth and is crippled in this process, but in its last act of defense it created the Ghosts who contain its Light* and they bring the dead back to life, and give them some of this Light which makes them powerful. They become The Guardians, and that is who you play as. There are three different classes with different abilities; Titan, Warlock and Hunter.

Before I played Destiny I was relatively new to what was known as next gen gaming platforms. I bought an Xbox One because I wanted to be able to play the next Mass Effect game, and I got Forza Horizon 2 free with it. Let’s go back a few years though. As a kid I hated playing against people. I always thought this was because I wasn’t interested in competitive play but I later found out while playing multiplayer in Forza Horizon 2 that I was actually socially anxious.

Social anxiety isn’t something new to me. When I was young I had a severe form of social anxiety called selective mutism, and I’m autistic so social awkwardness and phobias have always followed me around. When my then boyfriend’s brother wanted to play a few Mario games with me I lost badly to him and then on I thought well if I can’t win then why bother?

But after playing Forza Horizon 2 competitive play was something I longed for. When I first heard about Destiny it was advertised as a shared world; other players would literally be there as you played story missions. I felt this would be a good way to introduce me to an online world. In those early days I was still nervous to perform actions in front of people. There’s this part of the game where you have to scan a crashed ship and I waited until another player had done it to do it myself. I would then have people around me to help fight enemies in story missions until I got to The Darkness Zone which is a limited respawn level. Then, I started to miss having them around. Often when I was unaware about what to do I would watch other players and even sometimes I would watch them just to learn how they would strategize their own method of facing powerful enemy AI. I copied that and I learned it and it soon became natural part of my own strategy.

By around level 12 I found myself visiting Bungie’s online community seeking help to make me finish story missions. It was the Grimoire that made me find their site at all. The people in the community were willing to offer help to noobs like me and were patient when they joined me for a mission and helped out when they knew I was too underpowered. Destiny is the type of game where you have to level up your strength and that’s usually by collecting higher Light weapons and gear.

When playing with these people I would be very nervous to talk and I couldn’t stand the sound of my own voice but overtime I began to relax and speak with more confidence. Then when I reached the endgame* I had to team up with people regularly. Now I was doing Nightfall Strikes, raids and harder story missions. I joined an Australian Destiny community and soon became friendly with all the regulars. To this day I still have over 100 people on my friendslist who I can invite to my Fireteam to help me with Nightfall strikes or a raid. Playing co-op in raids and Nightfall helped me learn about the different roles in a team and about how to listen, when to speak and to help others when they are literally (Guardian) down. It is valuable knowledge that I can take into the real world with me.

It’s not just playing Destiny helped me gain social skills and learn the importance of teamwork but I would find on days when I was so overcome with depression that I couldn’t move from my bed and my head was full of many unpleasant thoughts of self-doubt, self-hate and suicide all it took to make those feelings disappear was half an hour of playing Destiny. Perhaps it was because you can play with random people in match-made strikes and sometimes you would find a team that really worked well together, we were old friends. Or I might play co-op and just mess around with friends. And even on those days where just everything goes wrong and I’m extremely stressed and ready to blow – that’s when it’s a good time to run around The Plaguelands and practice shooting Fallen Dreg heads off and maybe pretend they were someone else.

Between year 1 and year 2 I would play Destiny for 9 hours a day. I’d start by collecting bounties* that went toward leveling up with a faction* that would give rewards like new weapons and armor, usually of higher Light. Then it was about completing Nightfall on all 3 classes and then getting raid specific weapons and armor by, yes, completing raids. Then I found my childhood friend was playing Destiny with her husband and I joined a clan that I could really communicate with and have an enjoyable time with.

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Warsat Warriors ready to raid…after we get the rest of the members to join our Fireteam.

Raiding was where my social skills were really put to the test. People had a problem with me being too quiet and not understanding directions, and I had problems with the self-made alpha of the group and just very cruel humor and people chit chatting so I couldn’t hear directions properly. But when I found a patient and understanding raid team we really clicked as a team. When somebody stumbled there would be a bit of giggling but we’d help each other out. Through raiding and the very intense and difficult Nightfall strikes I learned to listen to people and communicate more effectively, and even join in on the banter. And it was always so rewarding completing the raid. What did Bungie used to say about raiding? You’d go in as strangers, come out as brothers.

Unfortunately, after my friends quit Destiny for a while I gave up on raiding. It’s something I would like to try again, because 100%ing Destiny is like overcoming some of life’s hardest challenges for me, but for now it’s something that I avoid. Just trying to complete raids was really putting more stress on me and reminding me of how autistic I am. It put me into a low mood where I was constantly judging myself. On the bright side at least when I go back to raiding there will be something new for me to do in Destiny instead of waiting for Bungie to release more content.

When The Taken King expansion pack was released Bungie introduced a quest system that made all the repetitive play worth it. It’s these quests, especially the record books that keep me coming back to Destiny. At first I was a bit annoyed that in order to complete some quests I would have to spend a great deal in The Crucible, the PVP* multiplayer mode. But then my skills in The Crucible increased and I learned to adjust with the changing meta* by changing the types of weapons I used.

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I enjoy my time in Destiny’s in-game universe too. I love science fiction so when I first heard of this game I was all for it. It’s an online world and I really see that world as an alternate reality. My class is Titan and I take their role as protectors of humanity seriously. When I play or read up about Destiny I put myself into a state of mind where I see that The Fall really did happen and we are at war with four enemy alien races. I choose my factions just as seriously; when I found out New Monarchy attacked the City I changed to Dead Orbit. I like to experience every moment of Destiny as though it’s real. I run through The Tower* like it’s Hogwarts. I used to play the Harry Potter games where I’d just run around and explore the school. I can ride my sparrow* through Old Russia* or Venus or Mars just for the sake of it. I love my fellow Guardians. There’s a real camaraderie between clan mates and regular players I’ve co-op’d with who have become my friends. We can dance at each other for hours or communicate through gestures. They can make me laugh without saying a word. When I’m not playing Destiny I’m missing making those gestures in other games.

I find the Lore inspires my own need to write science fiction. The way Bungie takes ideas from mythology and turns them into canon in their own made up universe is something that I strive to emulate. People who aren’t bothered to look into the deep lore are missing out.

Destiny is more than just increasing my skills as a gamer and making friends in a gaming world, it’s about making friends in the real world, learning to understand human behaviour and that the good guys outweigh the bad. There are some in the autistic community who give up on making friends because of a few bad experiences. I’ve had some seriously bad experiences in Destiny but I’ve also had great moments to treasure forever. Knowing that is enough to make me want to keep playing Destiny with others, and not reject friendship in the real world too.

I’m taking a break for Destiny while I play other games. I’ll be back when another live update* happens or when I’m over the other games and make an attempt to finally get Thorn* or my exotic sparrow.* Or private SRL matches* or another attempt to raid. Or try my luck and finally get Icebreaker.*  There’s always plenty to do in Destiny and it’s the type of world that I will always be happy to return to. It’s inviting, fun, challenging and extremely rewarding.

I may not play Destiny forever. Indeed, it only has a 10-year lifespan. But I will always remember how much it has helped me.

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Destiny Year 3, Christmastime. I’ve played since Year 1 and I’ve got nothing but hope for what Year 4 will bring.

Destiny/ Videogame terminology

MMO – Massively Multiplayer Online. A game-type where you can play and interact with other players online. Usually you complete quests or raids and can trade items between each other and join guilds or clans.
People would argue that because of Destiny’s lack of verbal communication with all players (you can only talk to your Fireteam) that it rules out Destiny being a complete MMO. Destiny is basically built like an MMO; you level up, upgrade gear and play the game past story completion. It’s played online and has content added to it. However, its lack of trading between players takes some of that MMO feeling away from it.

Grimoire pron: grim-wahcards you can unlock by completing various achievements or collecting dead Ghosts in Destiny. Each card has a piece of Destiny Lore which gives vital insights to the story. Among the most committed players it’s imperative to read your Grimoire cards. The Grimoire is only accessible through Bungie.net or the Destiny app.

The Darkness – Through reading The Book of Sorrows Grimoire you will find out that The Darkness isn’t a being but rather a philosophy that encourages gaining power through destruction and killing. Kind of like capitalism.

Light – Is it magic? It’s a type of supernatural power the Traveler, The Ghosts and Guardians have to wield special abilities. As some types of light are Solar, Arc and Void you may have to look into Hinduism to find your answers. It’s a bit like The Force in Star Wars which is taken from Jungian theory of a life-force.

End Game – In MMOs the End Game are challenges to complete for upgraded weapons and armor or even added on story missions after you complete the main campaign (story missions with the original game).

Bounties – Quests you can complete to level up with your Faction. You collect these bounties from a Frame (AI with limited helping abilities) on Tower grounds.

Factions – The Factions are groups who have differing views of where humanity should go next. They used to be at war with each other but now Guardians can claim allegiance to them by fighting in their name and collecting rewards as they level up.

PVP – Player vs player. Competitive multiplayer.

Meta – Originally meta refers to a type of strategy that transcends the basic rules and uses external factors to affect the outcome of the game. In Destiny weapons are balanced regularly and as a result some weapons become more powerful than others in PVP, i.e “Matador 64 is so OP now.” Following the meta means you’re guaranteed to own modes like The Crucible, but it means to regularly change around your preference of weapon, or weapon loadout.

The Tower – The last safe haven on Earth. The rest of the world has either been destroyed or occupied by The Fallen and Hive.

Sparrow – A guardians only means of terrestrial transport. Literally The Speeder Bike from Star Wars.

Live Update – Free content added to the game that is smaller than DLC (downloaded content). Because of micro transactions (real money purchases made in-game) Bungie can add this free content. Live Updates do come with new quest steps and sometimes new weapons and armor. Most importantly, they come with new emotes; gestures and dancing.

Thorn –  an exotic (super powered) handgun. Can only be obtained through quests. It’s a favourite amongst  Guardians. It’s also hated by many for its poison perk (ability) which made it a killing machine in The Crucible.

Ice-breaker – the God of all sniper rifles. An exotic that used to have self-replenishing ammo every 6 seconds. Currently only able to be obtained through Nightfall strikes.

Exotic Sparrow – A quest only once obtainable through buying Redbull is the U.S. Now it’s added to a forever growing questline. The sparrow is supposed to be one of the best, particularly in SRL.

Old Russia – Currently the only place on Earth Guardians can go beside the Dead European Zone, that is under enemy control. Hundreds of years ago humans tried to flee The Fallen invasion and the results of that encounter can still be seen in burnt out rusted cars piled before The Wall and human skeletal remains.

SRL – Sparrow Racing League. A PVP sparrow race that is super fun and just offers something different than the usually shooting modes in Destiny.