Leave My Diagnosis Alone

I mean here’s the thing about the proposed reduction of autism diagnoses; it’s bullshit. Here’s the other thing; they’ve already done it.

Okay, allow me to explain; the UK NHS rolled out an idea the other week to reduce the number of autism diagnoses to only the most severe cases, which I only didn’t mention last week because I’m also grappling with one of my not-as-infrequent-as-I-would-like low mood episodes, brought on mostly by stuff outside my control. They’re citing stuff like ‘waiting times for diagnosis’ and ‘allocation of resources’ but the point is, it’s quite severely damaging for people like me and my peers who barely make the cut as it is, and have to fight for every additional resource we need because we have all the effects, but on paper we don’t qualify.

The problem I have, in all the outcry over this, is, in a lot of ways, it’s already happened.

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Allow me to explain further; clinically speaking (and drawing heavily on my lectures here), autistic spectrum disorders are split into four syndromes:

These are diagnosed by the DSM, or Diagnostic and Statistics Manual, published by the APA and is used worldwide for the diagnosis of psychiatric and developmental disorders. It’s also the research criteria used by academics and researchers, but that’s beside the point.

The most recent DSM – DSM-5, the fifth edition released in 2013 – made several revisions to autism and autism diagnoses; namely, the removal of Aspergers and PDD NOS to be replaced by the umbrella term of ‘Autism Spectrum Disorder.’ They’ve also tightened the criteria, in the name of making diagnostics fairer and more valid. What they don’t realise, as the ARI article points out, and that the NAS point out in the BBC article, is that this runs the risk of us ‘high functioning’ lot getting left out in the cold. Just because we have higher IQ’s and are better able to learn how to socially function, doesn’t mean we don’t need resources; extra tuition, more time in exams, specialist equipment. It’s tough enough getting that help, and without that all important piece of paper telling the Powers That Be that we are entitled to them, we’re not getting squat.

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Under the rules, I have never qualified for an official diagnosis of Asperger’s, despite showing all the classic traits, and it was like a kick in the gut when my lecturer, quite calmly, explained that a part of my identity no longer existed, consumed by an umbrella term that doesn’t necessarily describe me the same way as ‘dyspraxic Aspie’ does. What might happen within the NHS is far, far more drastic a shift and if that happens, hundreds of thousands of people like me face the same kick, but from the system that’s supposed to care for them, not throw them away. I love the NHS, but sometimes it can be a bit bloody stupid.

I’ve lived with this ‘borderline’ thing for 23 years, and I’m used to it. There are people out there who have never been diagnosed, and now, under these DSM-5 revisions, might never be. And under the new NHS plans, still more people could lose out. That cannot and should not happen.

Hopefully it doesn’t happen – the NHS plans are only plans right now – but the things rolling around in the news these days, like dementia taxes and the US President pulling out of the Paris Agreement (aka. the biggest and most comprehensive climate change deal ever), I’ve rather lost faith in the abilities of the people leading us to make sound choices. Hopefully all that changes in the next couple of weeks, but we’ll see.

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Anyway, I should put that out of my mind for a while. It’s my birthday this weekend, and I’m attempting to organise a party. This could either go splendidly or down like a lead balloon. Low mood brought on by consistent, niggling pokes the universe seems intent on giving me right now is not doing wonders for my state of mind.

Oh well, I’ll crank it out. I usually do.

Stay awesome, everyone.

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Good Evening one and all!

My flipping beast of a laptop has decided to pick up the charming new habit of disconnecting from its battery if I pick it up wrong, so this might have to go up a couple of times…no matter.

Anyway, I’ve been stupidly busy over Easter, with both family and schoolwork, but it’s finally coming together and it’s all looking good.

So, in this installment of ‘What’s going on in Hannah’s head’ this week, I was thinking a bit about boxes. Mental boxes, not physical boxes. I just about finished my abstract philosophy essay this morning, and I’m pretty proud of myself for it. Maybe it is just a question of familiarity. But the thing about mental boxes, or labels, or whatever you want to call them, is that they’re quite a contentious thing these days. I spend a lot of time on Tumblr, when I get the chance, and when I’m not browsing my fandom tags (don’t judge me, okay) I’m skimming through the social activist posts that inevitably crop up on my dashboard. And most of them are on the same wavelength – “Let People Be Who They Are.”

Which is fantastic, but then you get into the argument of just where the boundaries lie, and that’s where you get problems. It’s like a sociological border skirmish.

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Here’s the thing about human beings – we like to put things in boxes. We like to label stuff – there’s evidence to suggest that we form impressions seven seconds after meeting a person, and stereotypes become formed by age 7. It’s probably a defence mechanism – we like to know what we’re dealing with. Ingroup/outgroup, and all that jazz.

Something that came up during my last ‘Philosophy of Psychology’ essay (let’s call it that for now) was that I can’t deal with abstract concepts, like theories with no scientific basis. Which is the whole basis of philosophy, as I see it – it’s all speculation based on either observation or one too many snifters (for further information, please see Monty Python’s ‘The Philosopher’s Song.’). Hence I finally grasped what the hell I was meant to be doing and promptly went, “Ah, f*ck this.” (The same is happening now, except I have more of an idea of how these people think, so it’s no so much of a holy mystery). But, anyway, something that came up between me and my mum was that I don’t do abstract. Like, at all. Stuff that I can’t put away under a label, or in a box, blows my mind.

Realising this was a good thing. I was able to tell him, “Be precise!” when I was doing some DIY on the farm over Easter with my Dad, rather than getting yelled at for getting confused (and then yelling back at him for being confusing) . Usually, I’m quite good at DIY, and at working with Dad cause we’ve had a lot of practice; but sometimes he trails off in the middle of an instruction, and then I can’t read his mind and get confused. Maybe a neurotypical could, depending on level of experience, but I can’t. Please, be precise, I don’t know what you’re thinking. I can’t extrapolate what you want.

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I think, as an Aspie, that’s why I like mental boxes so much. I like to have a category, I like to have a prescribed set of drills, I like to know what I’m supposed to be doing. I think maybe that’s why there’s such a lot of overlap between autism and OCD – it’s not just about the sensory stimulation, the tic-ing, the love of routine et al., et al…it’s about knowing what, or who I’m dealing with, which social scripts to access. The need to have everything where it should be so I can sort through it both mentally and physically.

It’s made more complex by the fact that my dyspraxia means I can’t always make my body or my words do what I want them to. Knowing who or what to expect makes it easier because I have time to activate the right script and practice it. You hear me talking to myself? That’s probably me doing just that.

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So, I see all these people on the internet, arguing about what constitutes a particular label, or what’s the best way of talking to people who identify with a particular group. And different names for the same thing, or different ways of referring to the same thing. Its like wading through a bramble patch. Hence I don’t really engage because I know I’ll slip up, so I stick to what I know.

Yeah, I’m aware of how closed minded I sound. But bear in mind this is the girl who didn’t engage in class discussion from the age of about 12 to 18, who had her first curry at 17 and thought she was brave for trying a korma (I still hate overly spicy food), who found it easier to lie about the fact she was in a same-sex relationship because it was preferable than facing the questions. Who had a complete sexuality crisis when she was in that relationship because she was changing boxes – from a girl who thought her bisexuality was a phase to embracing it fully (and loving every second, might I add).

I want to step outside the box, but it isn’t easy for me. I’m trying, but outside the boxes, I don’t know what I’m doing. I don’t know where the paths are, and I don’t want to get lost.

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As a species, we love boxes, and putting labels on them. For the people that don’t fit in a specific box, it’s tough. Hell, I don’t even fully fit into the Aspie box, but here I am. But labels can be empowering as well as stigmatising, so we shouldn’t throw them out altogether.

I suppose the end message is this: Box things up, but make sure you put them in the right place.

Stay awesome, everyone!

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Review: A Boy Made of Blocks

*Will contain spoilers for the novel*

Evening everyone!

You know, there’s very little that’s more British than wishing for rain while the sun is shining in a clear blue sky. We are never happy with the weather.

Okay, there’s a good reason for it; we need to roll out the lumps in the horse’s fields and we can’t do it while the ground is like iron, which means I get to ride the quadbike, which is AWESOME. And I just realised how incredibly middle-class that sentence makes me sound. I am so sorry.

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It’s one of the many things you don’t have to worry about in Minecraft. The earth always breaks when you want it to, and it regularly rains like a bitch. If you don’t mind the odd zombie hanging around (or a skeleton, God I hate skeletons), it’s pretty idyllic. The very ground beneath your feet bends to your will, which is at least part of the appeal of it for Sam in Keith Stuart’s novel ‘A Boy Made of Blocks.’

Some scene setting; Sam is eight, and on the autistic spectrum. He’s fairly high-functioning, but he had his moments – a lot. Alex is his father, and is, to put it bluntly, a complete mess. Jody is his mother, and perpetually stuck in the middle. Sam likes to play Minecraft, and Alex eventually realises that it may be the only way he and his son can reliably communicate. There are some other characters which move in and out of the story as necessary, but I would say they are more central to Alex’s story arc than Sam’s.

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The book is based on the author’s experiences with his own son, and I think that real-world edge really shows through; it manages to be both very true-to-life and heartwarming novel. It’s told from Alex’s perspective, so we don’t get a lot of Sam’s psyche; nevertheless, despite the insider view, I spent the first half of it wanting to punch Alex in the face (sorry mate), and the second half of him yelling at him to sort his life out. I can’t really blame him, in some respects. We’ve all been there, on occasion – life falling to pieces, no idea what to do about it, and burying our heads rather than try. It isn’t an excuse for not trying, though. There comes a point, even when depressed, one has to say ‘enough,’ and I think Alex was long past that stage – to the point I felt sometimes it was being milked for dramatic effect, but mental health issues aren’t overcome in a day, so Mr Stuart is forgiven. For now.

But I got so furious every time Alex got angry with Sam, whenever he shouted rather than tried to understand, whenever he gave up and snapped rather than tried to get down to Sam’s level, or Jody’s for that matter. Like he’d rather cause an argument because that’s what he’s expecting. There was a lot in the family dynamic that reminded me of growing up in my own household; not so much in terms of character personality, but in their interactions. It’s even true today, though these days my parents won’t even mention one another unless made to. It hit me quite hard in that area.

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No wonder Sam wants to run away and hide in a sandbox world. I did the same thing with storybooks. The same ones, over and over and over again, because they were predictable and therefore safe. I could deal with them. And Minecraft itself isn’t just a ‘run wild and free’ kind of game, even though you can build basically anything you want to. There are rules for it; all your recipes have to be exact or they won’t work, you can only pick up certain blocks if you break them with certain kinds of tools, certain things only spawn in certain places or biomes, it’s actually quite formulaic. You know what to expect. But there’s just enough freedom to make your own mark on the game. And okay, I can only really understand things once I’ve experienced them, that’s just the way I work, but I think the way it brought Sam out of his shell is actually quite accurate. In the same way I related (hah, still do) a lot of the world to what I read and saw in stories and films, Sam relates the real world to the virtual blocks of Minecraft, and in that way he starts to understand it. And so he starts to understand his dad, who starts to understand him, and it’s that understanding which starts to draw the family back together, in the end.

It was really beautifully done. And I guess that’s the point – if we don’t understand,or even try to understand, nothing will ever get better.

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Yeah, I guess it was one of those books which hit me in all the right places, even if the protagonist spent a lot of it annoying the hell out of me. And it portrays autism in a realistic light, rather than the overly positive or negative skews you can find depending on which media you access. Yes, I think it made a bit of a meal of Alex’s issues to try and create some drama and sympathy, but in terms of its portrayal of Sam and the spectrum, I thought it did a wonderful job of showing both the beauty and the strain. 9/10 would recommend to someone who was lowkey interested in the subject, or to someone looking for a starting point to learn about autsim.

Thanks for reading, and stay awesome!

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A Boy Made of Blocks (link to Amazon)

Minecraft (Mojang)

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Now trending – #ignorance

Hola!

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Last week, I quoted an old opinion article from the Evening Standard, talking about how we need to stop giving kids diagnoses like dyslexia and dyspraxia, and dyscalculia and the like, blaming the failings of the education system and the willingness of teachers to believe these children have ‘brain diseases’ rather than bucking up their act and teaching them maths. You may also recall I got a Bit P*ssed Off about this.

It seems to be a trend.

Fessing up to my own ignorance first; until I did a Google search for autism a while back (for something else), I did not realise that there are people out there who do not believe the condition exists. I was moderately horrified (though I suppose, in the end, not really surprised) to find that this was the case across the board for learning disorders, and mental illnesses in general. Like this article from the Telegraph quoting a group of academics who want to drop the diagnosis of dyslexia because they fell there are no unifying characteristics for it. (To which my slightly incredulous response was, ‘Have you never heard of an umbrella term?). I had a fight with my flatmate’s boyfriend last week when he came out with the phrase ‘People with depression should just grow a backbone.’ (He apologised afterwards, but only after being shouted at for five minutes straight). This afternoon I was chatting to a bloke with an autism spectrum disorder, who apparently was made to attend a “special needs school” because nobody ever thought he’d amount to anything. Can’t vouch for its veracity, but all together it got me thinking about how we find out about learning disabilities and mental health.  I’ll tell you something – at school, when I was growing up in the 90’s/early 00’s, we were taught zip until A-Level, and then only because I took psychology.

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We all ought to know about the whole ‘autism is caused by the MMR jab‘ debacle that went down in the early 90s. Essentially some idiot published a paper of (completely fabricated) data that established a ‘causal link’ between MMR and autism, and anyone who’s ever done scientific research will know that concrete causal links are something of a holy grail, especially in psychology. This particular link was, of course, pure bullshit: yet is still extensively quoted by the anti-vax movement even today – America’s very own President Fart included. Because obviously, your child dying of measles is preferable to them having autism :/sarcasm/. What really gets to me is the wilful lack of education that these people seem to display. It’s not like we’re blinding them to the benefits of vaccination: we’re giving them reams of information on why it’s good for them, and the health of the population as a whole. We’re practically shoving it in their faces. Are they listening? Big Fat Nope.

(I should add, my mother and father were some of the ones that listened; autistic or otherwise, I was vaccine-ed up to the gills. Five-year-old me was not impressed).

It’s the same, I think, with mental health disorders. It’s gotten better, there is no doubt about that at all, but the second (and I mean the second) someone who has a mental disorder gets a gun and shoots someone/gets shot by the cops, everyone with a mental disorder immediately feels the fallout. Sometimes I feel like no matter how much we try to teach people about these disorders, and how to manage and care for people, and treat people with these disorders, it falls completely on deaf ears – or that all ears turn conveniently deaf whenever someone with a mental disorder commits a crime. And when you have people who are supposed to be professionals coming out and saying that disorders such as anxiety and depression are nothing more than myths…it’s enough to make anyone despair.

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It’s evident through history as well. One of the prevalent theories of autism through the 50s and 60s was that of the ‘refrigerator mother’ – the idea that autistic children are the way they are because their mothers are emotionally distant. This has thankfully been disproved a thousand times over, but the idea remains – as shown in this 2012 article arguing that children with autism are simply deprived of love. This, as we all know, is bullshit. I and people like me, react differently to the world; this does not mean we are neither capable nor deserving of love.

Thing is, as I said before, I never really expected to find the same case with dyspraxia as well – I guess because I grew up with a name for my difference, I simply took it for granted. Not to mention I study psychology, which probably colours my view somewhat. But then you get stuff like that Evening Standard article, and this book (the blurb actually makes me feel a bit ill). You note they both call learning difficulties ‘diseases’ as opposed to ‘disorders.’ Shoot me down if you will, but I think calling them diseases is a complete misnomer, and not for the reasons you might think. Yes, disease has a different stigma to it, but the word also implies that there is a ‘cure.’ And there isn’t. There is no cure for what I have, there is no cure for what my friends have, and in trying to cure us of autism, or ADHD, or dyspraxia, you’re more likely to destroy us. It’s like thinking you can cure someone of being gay, something else that makes me feel ill – the curing attempts, not the gay.

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And who suffers for this ignorance? The academics in their ivory towers, the titled professionals and the opinionated parents? No – it’s us. The labelled ones. Parents will scour blog-sites and newspapers for confirmation that this scary thing their child has is curable, and meanwhile I feel like nobody wants to understand why I am the way I am. Until my diagnosis, I’d never heard of dyspraxia. Nobody ever talks about this stuff, and it’s a crying shame. Because until we do, this culture of ignorance and fear of the unknown, or the different, or the extraordinary, is only going to grow, and prevail and I do not want to know where it may lead us.

So can we get the #ignorance trend out of society, please?

Stay awesome, everyone.

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Guess Who’s Back?

Salutations!

My God, what a week! First, I am so sorry there was no update last week – my Wifi decided to kill itself, and it didn’t come back until halfway through the weekend. It chose the worst time to do it, I have so many assignments to get in. Combine that with the lack of motivation I was experiencing a couple of weeks back, and academically I’m in the shit. I’m getting no sleep this weekend, I can feel it in my bones.

So, I’m a week late, and I feel like crap about that, but hey ho. On with the content.

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What I was going to put up last week was based on this wonderful article that was posted in the Guardian back in October 2012, and cropped up on my Facebook newsfeed the other week courtesy of a friend of mine. You don’t see dyspraxia in the news a lot, and I always love it when you do.

Anyway, the author of the article is about living with a slightly worse case of dyspraxia than I have, but much of it rings very true across the board, particularly the part about maths and statistics. Numbers give me a headache; trying to manipulate them is even worse. I feel like I could have passed the statistics portion of my dissertation if I’d had someone looking over my shoulder and telling me what I was looking at, maybe I’d have done it right. The author makes a very important point about verbal IQ and non-verbal IQ – while her verbal comprehension is extremely high, parts of her non-verbal are ‘subnormal.’ It was the same case with me – when I was assessed, I had a verbal comprehension score of something like 99.98, but couldn’t recite a string of six numbers backwards. This isn’t uncommon – maths troubles can be found in many developmental disorders. Dyscalculia is perhaps the most obvious is terms of mathematical disability, but across dyspraxia and dyslexia as well, troubles will be found. I recall trying to perform a task in which I had to arrange cubes with different sides into the pattern shown on the sheet in front of me. I got through 3 or 4  in the time allowed. I think the average is about 9 or 10.

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The other important point I think the article makes is the one about hearing people and remembering clearly what they’ve said. A person can say words to me, in plain, slow, clear English, and my brain will just say ‘What?’ I call it a lack of processing power. I can  multitask, but only on a good day; lecture slides for me are a godsend because it summarises what my lecturers are saying if I can’t make it make sense in my head. Now, I know what you’re thinking – “If her verbal IQ is so high, what’s with the lack of comprehension?” The answer is; I have no idea, and neither, it seems does science.

And that’s the sad part, I think. Dyspraxia’s called the condition that too many people shy away from, and it’s largely ignored in favour of the more noticeable, better understood and more easily diagnosed dyslexia, or autism, or ADHD, or dyscalculia. One article I came across while researching this was this one from The London Evening Standard in 2004 which genuinely pissed me off. For one, dypraxia isn’t overdiagnosed, it’s underdiagnosed if you ask me. Yes, diagnosis wasn’t always as sensitive as it is today, and diagnostic systems have changed and improved vastly over the years since this article was written, but that isn’t the point. If you don’t diagnose something at all, there is no getting help for those who can’t afford it privately (as these people obviously can). For another thing, it’s not another ‘excuse for academic underacheivement.’ I think the phrase that pissed me off the most was ‘brain defect.’ Bollocks. If I have a brain defect, it’s one that I love; it’s one that allows me to see the world in a poetry that nobody else does. And if I – an MSc student at one of the best universities in the country – am an academic underachiever, I would love to see your definition of an over-achiever!

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Yeah, I got annoyed.

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I have said it before and I will say again, and I will keep on saying it until I am blue in the face; the only way to get around this silence is to break it. I find it so interesting that the posts I make tagged as ‘autism’ get exponentially more views and likes than those tagged simply ‘dyspraxia.’ One disorder is not more important than the other, of course not, but ignoring something doesn’t make it go away.

Like my dissertation proposal. Though I wish it did – this weekend’s going to be tough. Think of me while you relax?

And, as always, stay awesome.

Dancer

 

 

Paltering Along…

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Salut! Another week gone and another one still to come. It’s back to all systems go in the Land of Uni next week, but right now it’s really quiet, with everyone still waiting for term to restart. And in the gap, I find myself, in the manner of all great TV shows, with a filler episode.

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One of the things I’ve always been very bad at is lying. Not because I’m a bad actress, but because lying to me feels nasty and unnecessary. And for want of other things to talk about, there was an article that cropped up on the BPS research digest this week which was interesting – how misleading someone with the truth can do you more harm than good.

I’ll be honest (ha!), at first I looked at it and went, ‘Is that even a thing?’  But no, apparently it is a thing – paltering, which is telling a truth to mislead someone. The example given from the original study was attempting to sell a car that occasionally wouldn’t start to someone, without telling them that it occasionally wouldn’t start; “The car mostly runs very smoothly.” According to the researchers, misleading someone in this way – telling a truth but lying overall – may feel better in the short term, but costs more in terms in trust and in future associations in the long term as it’s viewed as unethical.

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From my own personal standpoint, that makes perfect sense. I’m quite an honest person, occasionally to the point of painful bluntness. This has cost me some friendship points in the past. Yes, it’s an autism thing, we’re really bad liars as standard, but I was also raised that way. I still got in trouble for breaking stuff but if I was honest about it, all I got was a ticking off rather than a lamping. But in return, I’d far rather the other person was completely honest with me. The truth can hurt, but it’s far easier to deal with than suddenly changing your whole viewpoint of a person or situation after finding out they’ve outright lied to you to spare your feelings. That hurts more than pure honesty.

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I guess because I could never quite conceive of someone lying to me, I can never tell if they are, even to this day. And yeah, I’d lie to my parents to get myself out of trouble (not that it ever worked), but apart from that I was always on the side of truth. And they were always fairly truthful with me, like when our cat got cancer or ‘they’re not monkeys, they’re Orang-utans.’ So the concept of using the truth to mislead at first was a total mystery to me – but think of any ad campaign you’ve ever seen. I always find myself wondering, ‘Well, what’s the catch?’ which, I suppose, is the one question they don’t want you to ask. There’s always a catch, that they gloss over with something like paltering. When I realised people did things like that was the point I started to become jaded. Fortunately I’m not so jaded that I can’t see the good in humanity any more – but nevertheless, consciously comprehending a concept that comes more naturally to neurotypical kids I think had more of an impact on me.

In any case; lying costs – financially, emotionally, and if you don’t tell your mum, sometimes physically as well. Lesson over.

I’ll try and think of something a bit more fleshed out next week. Dissertation proposal coming up, as well as a few more assignments, so everything’s gearing up to go ape again. Though not orang-utan. I think they’re quite happy where they are.

Stay Awesome!

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Original BPS post

PsychNet article

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What’s in Your Head?

Good evening Internet!

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So this week’s post is going to focus a little bit on what’s happening in the brain when someone on the autistic spectrum meets the world at large. I should also mention I’m fresh out of an exam on this kind of thing, so forgive me if I get a little technical.

I should also mention being inspired by this post here; an article on “Meta-Culture” written by a good friend of mine. I think Meta-Culture is a really good phrase to describe someone’s mental landscape, so I’ll continue to use it here (no infringement intended, except possibly on the good name of psychology). Like me, he’s a bit on the spectrum, and a lot of our personal experiences in society line up.

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The defining feature of any Autism Spectrum Disorder is social impairment. Whether high-functioning, profound, Aspergers, or somewhere in the middle, we are born without this innate ability to…I suppose ‘read somebody’s mind.’ To be able to tell what somebody means without asking for clarification, or to read the subtext without needing a prompt. It’s not an upraising thing either, so you can dispense with the whole ‘cold mother’ argument right here and now. Children on the spectrum show changes at the most basic building blocks of brain structure – we’re talking the neuronal level. We are literally wired differently to neurotypicals, like Jedi and their midi-chlorian counts.

And as you might expect, a lots of these differences are found in the ‘social’ areas of the brain; Frontal lobe, temporal lobe, facial processing, language areas…there’s even been a psychologist try and show mentalising abilities are linked to issues with ‘mirror neurons,’ which stop us from imitating other people. I can tell you right now that’s not true for everyone, but interesting nonetheless.

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Definition: Mentalising, to mentalise (v)The ability to understand the mental states of oneself and others that underlie overt behaviour.  So not quite Derren Brown, for those of you who were wondering.

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So, it’s hardly surprising that we’re not sure from the outset what these funny little creatures trying to interact with us are really trying to achieve, if anything. I don’t have a lot of explicit memories of primary school but my overarching ones include a lot of being lectured by my classmates whenever I’d done something ‘weird.’ Not a nice feeling.You spend a lot of time messing up on the playground or in class and nobody will explain to you how, or why you messed up. It’s deeply confusing. Claire Sainsbury, in her wonderful book ‘Martian in the Playground‘ said “It was like everyone around me was playing some elaborate game, and I was the only one who hadn’t been taught the rules.” At eight years old, with only the vaguest concept of what autism was, having someone put it into words for the first time was a real eye-opener, and that quote has sat with me ever since. After that I started forgiving myself a bit for all those social screw-ups that made me so unpopular at both primary and secondary school. It was me, but it wasn’t really my fault. It wasn’t like I asked to be born like this.

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In terms of emotional development and in some areas of higher functioning, I’m about 3 years behind everyone else in my peer group (my own estimate, not a clinical opinion). As I mentioned last week, I’ve only just worked out higher education exams. Yes, everyone has to learn some social scripts, like eating in restaurants or going to the cinema, but not everyone has to learn them all; like the correct greeting, or when to greet, or knowing when to talk to someone and when to leave them alone. The correct protocol when seeing someone you might recognise in the street. When to pet the dog and when not to (that is so difficult. So many nice dogs, so little time).

Even today, walking into a new cafe and ordering a coffee can be fraught with difficulty, even fear, especially if I’m not having a ‘good words’ day. Did you know that anxiety disorders have a prevalence of around 40% in children on the spectrum? A lot of the symptoms are often mistaken for the characteristics of ASD, though, like hand-wringing, and social withdrawal, and insistence on sameness, so some will go untreated. Ultimately, anxiety disorders are a lot more common in neuroatypicals than in others – and it honestly makes logical sense. I don’t even have to cite the science. If you grew up knowing that there was a high chance that every time you went up to speak to someone – be in your best friend or the barista – there is a higher than average chance of f*cking up massively, wouldn’t you develop some anxieties?  As I’ve said before, social awkwardness and anxiety are not mutually exclusive, whether in a disorder or other wise.

I eventually grew over a lot of those, mostly through some good friends, sheer grit and the knowledge that hiding wasn’t going to solve anything. Trying to act like my favourite book characters helped, because I got thoughts and scripts and a lot of confidence from them. The internet helps as well, through mediums like this; people sharing their stories. We’ve all got a lot more in common than we like to  admit. As Sherlock Holmes said last week in The Lying Detective, “I have this terrible feeling from time to time that all of us might just be human.”

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We don’t all have the best understanding of other people’s meta-cultures, but it’s not an excuse to be an arsehole – on either side of the table – and it’s not an excuse to bully or belittle. While a lot of us will learn how to talk to people – how to be ‘earthlings’ if you like, rather than the martian in the corner, some of us need a bit of understanding every once in a while, be it our own space and permission to do what we want to do to calm down, or an out in an emergency.

We’re doing our best, and we love you.

Stay awesome, people.

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Wine and Beer

Teapot and Teacup

If anyone’s interested, this is the paper which demonstrated lack of connectivity to mirror neurons in the brains of autistic adults

 

 

 

 

Christmas Crackers

First off, I’m a bit annoyed with myself. This was supposed to be going up earlier in the week. Regrettably, I then went to my Dad’s, who turned out to have no internet. Oh well, it’s forcing me out of room and into being social, which I guess is the point of having a family Christmas.

For a long time, Christmas has been a bit of a weird time for me. Up until the age of about 16, it was me, my Mum, and my Dad in a mildly stressful but ultimately happy dynamic. That fell to pieces at 17, and at 18 I outright refused to come home. Ever since, Christmas has been a mixture of the weird and the wonderful. More weird than wonderful, to be honest.

See, now my Dad has a whole new family (and cat). Josh is still in the picture, obviously, and my sort-of-stepmother has a mother, and three kids of her own, two of whom have long-term partners. Christmas Day rocketed from three people to about nine in the space of a very short time. New house, new town, new people, new baby this year…for an awkward dyspraxic-autistic kid it was like being thrown into the seventh circle of Hell. All my little Christmas traditions went completely out of the window, along with my comfort zone. Which incidentaly, I’ve never found since.

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I’ll be honest, I spent the first year of it all drinking steadily. I think I drank about half a bottle of Amaretto, plus some bubbly with dinner. Worked for me, since Amaretto I can drink pretty well without being too ill. My boyfriend and I, however, agreed that it wasn’t a very healthy comping strategy and I abstained last year. Big mistake. Massive anxiety attack slap-bang in the middle of dinner.

If there’s one day you don;t want to be having an anxiety attack, it’s Christmas, made worse when Dad wanted some help and then got pissed when I couldn’t give it to him and accused me of throwing a tantrum just to be awkward. Anyone who knows me knows I grew out of that phase aged about 15. Would he or my stepmum listen to me? Absolutely not. And ever year since, something about Christmas has devolved into some kind of massive argument. Needless to say, I’m not looking forward to it this year.

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Well, that’s a lie. I still love the spirit of Christmas; the pretty lights, the good food, and the crap telly. The one time of the year the family really comes together in the season of forgiveness n’ all that. Thing is, I feel more and more like a guest in my own family a lot of the time these days. Mum’s got her lot, Dad’s got his lot, and I’m left somewhere in the middle, drifting from one to the other as time and money allow. I’d stop; but Josh IS my Christmas tradition now. I’m not sure I could ever really stop seeing him, even if the rest of the visit is awkward as hell. My Dad’s partner’s family are lovely people, but occasionally I’m not convinced of how much they understand about a condition like mine – nothing obviously wrong, just a different view of the world that they’re not necessarily expecting.

It harks back to a point made by by our old friend in this post here – If you misunderstand something, it’s Your Fault. It’s not the nicest feeling in the world, misunderstanding something and then being told off because you misinterpreted it. This applies to all the times of year, not just Christmas. And I’m not throwing a tantrum – I’m being overwhelmed. Anxiety attached to autism is not restricted to small children in supermarkets – it occurs in adults to, even adults who are borderline. Dyspraxia itself comes with its own dose of social awkwardness, and I find, especially with me, it’s often this that creates the anxiety; they aren’t mutually exclusive. You screw up in public, you aren’t sure why or how, and nobody will explain it to you.

So think about your family neuroatypical this Christmas. If they’re scared, or triggered, or down, try talking to them. We exist, we’re valid, and it’s not just up to us to make Christmas amazing for the whole family.

Stay awesome, and have a Merry Christmas/Happy Holiday, one and all. I’ll finish on a word from Tiny Tim (A Christmas Carol)

“Bless us, every one.”

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Picture credits:

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Borderline Blues

It’s getting cold again. It’s definitely hat weather up here – even Rafferty, my adorable giraffe, is getting in on the action.

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Hello, Rafferty.

 

But I’ve had something of a rough day today and I wanted to talk about something.

Being borderline is painful.

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I should explain I’m dyspraxic. I may have mentioned this before. A few facts here. Dyspraxia, also known as Developmental Co-ordination Disorder, is at it’s heart a motor development disorder, which often goes hand in hand with mental difficulties as well, like organisation difficulties, speech and perception, and planning; I call it a lack of processing power. There are days a person will say a simple sentence to me, in perfect English. I will hear that sentence, and will have to spend a good couple of minutes to work out what the hell that person meant. I am no less intelligent than anyone else on a Masters Course, but I look at things differently and sometimes more slowly than the rest.

I am also borderline autistic. Borderline meaning I have all the major traits; delayed speech, delayed social development, stereotypic hand movements and a real aversion to eye contact and intense stimuli like bright lights and sudden loud noises – just not enough of them to warrant the full diagnosis. The way they teach it, and the way that a lot of publications write (academic and otherwise) focus a lot on early development and autism in young children, because this is when it’s most salient. It’s pervasive, though, and continues into adulthood. But I don’t get why every autistic person portrayed in the media, especially documentaries and the like, is either a genius, or in need of permanent home care. It is a spectrum, and a long one at that.

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The nice part of it is that I’m seeing more and more news crop about about shops and airports and cinemas becoming more autism-friendly. Autism friendly cinema viewings, for examples, have lowered lights and loud noises to stop sensory overload. The music and announcements are turned off in certain Asda and Toys R Us stores to allow children and adults with autism to shop in comfort. And I’m happy for them, if that’s the right phrase. Delirious, in fact. I’m only borderline, and every time the fire alarm goes off, I have a little panic attack (especially in the case of our halls fire alarm, which includes not only a siren, but flashing lights and an announcement declaring there is a fire in the building. Well no shit). It’s like a stimulus sensitive person’s nightmare. I can’t imagine what it must be like for those further along the spectrum.

It’s irritating as all-get-out, because as much as the dyspraxia diagnosis felt like it fit me (and it does, it fits me like a glove), every time someone talks about autism as a condition or their personal experiences of high-functioning autism, I feel like that fits me too, especially when I was younger. I’m autistic but I’m not. I’m dyspraxic, but sometimes I don’t know where the line is.

About this time last year, there was a fantastic blog post (which you can read here) which cropped up on my Facebook about having mild autism/Asperger’s Syndrome. This is essentially how I feel a lot of the time, diagnosis or otherwise. And there’s a lot of hate out there about it being ‘just an excuse for shitty parenting’ and a fake diagnosis. It isn’t. I made the massive mistake of clicking that option on a Google search earlier, and now I honestly feel physically sick. Later ranty blog post alert. Blogs like the one above, and a hundred thousand others will tell you it’s not like that. These are real people with real experiences.

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In some ways, I’m not really qualified to talk. I’m sort-of autistic, not absolutely autistic, and either way I’d be high-functioning. High-functioning autism is defined as having an IQ of over 70 (which is the average for people on the spectrum). This basically means that people with HFA have a greater capacity to learn things like social skills and ‘scripts’ (even if I’m still reeeeally bad at new situations. Seriously, new situations; I lurk like a creepy lurker). Still autistic. And dyspraxic. And a trainee psychologist, and a horse lover and a knitter and a walker and a consummate nerd who like Rooster Teeth way more than she should, who is head over heels for her boyfriend and want to go inter-railing next summer.

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Not being Aspie enough for the full diagnosis, and yet experiencing everything a person with Aspergers does, is not easy. Plus dyspraxia means I spend most of my days walking into doors. It’s a crazy-weird thing. And I’m not sure I’d change the way I think. I just want to be able to manage it right.

I am capable. But sometimes I feel no-one seems to think I am.

Stay awesome!

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For more about dyspraxia: The Dyspraxia Foundation

For more about Autism and Aspeger’s Syndrome: The National Autistic Society

A short note here; for the love of God, don’t go via Autism Speaks. They do not speak for us. Trust me.

Also a brilliant friend of mine works for the NAS and she’s quite frankly amazing, so; cheeky plug.

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