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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Broadcasting the Word

*raps* Guess who’s back, back again…

Yes, she’s back, she’s still alive (just about), and she’s having some pony therapy with her extended family down south. Just got back from a brief but lovely hack around the local farm; for those wondering, Josh is fine, but currently sporting the World’s Worst Haircut. Picture will not be forthcoming (yet, muahahaha…)

I’m still busy as hell, but I have got some good stuff stewing for when I have some more spare brain-space. So, what can we expect from the next few weeks? Well, I recently finished a book called “A Boy Made of Blocks,” about a boy with autism who learns to communicate with his family through playing Minecraft. As a borderline Aspie and a fellow player of Minecraft, I would highly recommend it, full review to come, probably later in the week. Still chipping away at that ‘Theory of Knowledge’ essay – I should not be complaining, I chose the title, I have nobody to blame but myself. Like I said in my last post, I’m not so good at abstract concepts, so there’ll be a bit on that, and why it’s so important for me to be able to fit things into boxes.

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But first things first – my stepmother listens to Radio 2 a lot, and I happened to catch the lunchtime’ Jeremy Vine’ show today while I was doing some work in the kitchen. It’s a show which covers relevant issues in the headlines, and invites both professional and viewer discussion, and it caught my ear this week because Paddy O’Connell (covering for Mr Vine) announced a special medical section on ‘dyspraxia.’

BBC iPlayer link (begins at 1:08:05)

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Paddy was talking to a medical professional, Dr Sarah Jarvis, and a woman called Charlotte who has dyspraxia herself (for the first section). On the whole, it was really lovely and quite respectful (aside from some unfortunate language use…’This dreadful condition of dyspraxia.’ Honestly, Paddy). I did also think Dr Jarvis took a bit of a patronising tone at times, but I’m looking at this from an informed insider’s perspective rather than a layperson who might know absolutely nothing, and she’s actually doing a very good job of explaining it in terms of someone who might never have heard of such a diagnosis. Let’s be fair here.

They focus a lot on the motor aspects of the condition, but I was very pleased that they included a section on how tough exams can be for us, because we have so much trouble organising our thoughts as well as ourselves. Charlotte told quite a humorous story about not being allowed to climb ladders because she couldn’t get down them again; I hate climbing on stepladders, I simply do not feel I can balance. Eating soup as well; Good Lord, it can be a struggle. Bread is such a saving grace when it comes to mopping up spills. She also spoke at length about always being picked last for sports teams. I never really cared all that much about sports, but I always thought that was because everyone thought I was weird, and it was quite distressing, on a personal level.

It’s so nice, so so nice, to know that these experiences are basically universal. We are a small but interesting community.

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We’re still focusing on the negative though; plenty of the people calling in were talking about losing jobs, being considered weird, never learning to drive a car or ride a bike. What happened to the rest of it? The differences in how we see people, and the world, the creativity and diversity of our voices? The doctor, the presenter, even some of the guest callers took a very negative view of the condition, focusing on its limitations and the negative impact it can have on children and adults, how hard it can be for us.

This isn’t to do down the people who do find it very difficult – there are people out there who are more profoundly affected than I am. I was lucky in that I was a very physical child and did a lot of physical activities including bike-riding and horse-riding, which let me practice co-ordination. Horse-riding is used as a therapy technique for children with conditions such as cerebral palsy, it’s amazing for co-ordination skills. But I recall saying to someone, long before I even knew dyspraxia was a word, that while I could balance perfectly on a horse (I have a very good seat and I’m very hard to dislodge, even when the horse is corkscrew-bucking), I could not do the same on the ground. Slow, careful, and fumbling on the ground, absolutely unstoppable in the saddle. Funny, that.

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 I suppose the point Dr Jarvis is trying to make is, it’s a lot easier with a diagnosis. Dyspraxia is one of the most underdiagnosed developmental conditions there is, and being teased for just being ‘clumsy,’ or ‘weird’ or ‘disorganised’ or ‘stupid’ (I heard that one a lot) can make it a very negative experience. As a young and confused child, it is very distressing and can very much colour your view of your condition. I was diagnosed at 21, some people aren’t diagnosed until 35, some get lucky and are diagnosed at 5. With a diagnosis, one has a new awareness of why this is happening, and we can start developing coping strategies for dealing with these difficulties, no matter what age we are. And this is true of any condition; dyslexia, autism, dyscalculia, even things like depression and anxiety as well.

Of course, if we don’t have an awareness, we can’t give the diagnosis.

“Aren’t I lucky that I don’t [have dyspraxia]?” is also a really unhelpful phrase, doctor. Let’s try and promote understanding, rather than creating an ‘us and them’ mentality, yeah?

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So, we’ll finish with a word from Mr O’Connell himself:

“Dyspraxia; learn what it is, and stop taking the mickey!”

Stay awesome, Internet!

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The Abstract and the Concrete

Evening, Internet!

So what’s up this week? Well, I’m wrapping my head around prism therapy, getting my Irish on for Varsity, and trying to stop my dissertation from crumbling around my ears. I am also highly aware that the structure for this whole blog has gone a little out of the window. Bear with, I’m doing my best.

I’m also trying to get my head around philosophy, which is no mean feat. Fun fact about me – I don’t do abstract. Like, at all. And translating the abstract into the concrete is even worse. I remember having a huge row with my mum over the right approach to the theoretical foundations to clinical case formulation because I simply could not comprehend what she was on about.  And now I’ve decided to write an essay about epistemology (also known as the theory of knowledge) in qualitative research, and I’m wondering if I’ve officially lost it for good.

Though occasionally I manage to surprise even myself, ’cause I wound up with a merit for the formulation essay. Who’da thunk it?

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It’s a bit like a lot of academic stuff, I think – a little bit harder for me, because my brain simply doesn’t urn that way. Most of the time, though, trying to grasp philosophy is more like  putting diesel in a petrol engine – *cough cough* and it’s dead. And I genuinely not sure why. Way back in undergrad, I just kind of accepted it (and took Dutch instead of a philosophy module because f*ck you). Can’t get away from it now, though. I deal in the concrete, the stuff I can measure, and analyse and then apply to previous knowledge, never mind the theory.

It might be a global picture thing. It’s a fairly well known facet of autism that we focus on the details first and the big picture second. Or maybe it’s just the fact I think along ‘tramlines’ according to my mum, which I think is a bit unfair, but not untrue. Anyway the long and short of it is, I might have screwed myself over with this one. Oh well. Just make it sound good, mm?

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On the other side, my organisational, people/social and general ‘cool’ are in the process of being pushed to the limits by my dissertation project. It’s just me – big contrast to last time. Which is simultaneously better and worse, I think. Yes, it’s more stressful, but ultimately, my really independent and narcissistic side would far rather be solely in charge. And here’s where I think the dyspraxia kicks in again – or rather, my coping mechanisms do. I have my own way of organising and my own ways of doing things (also known as three calendars, a spreadsheet and a decent mobile data connection). I don’t know why, but letting someone else into that tightly-run ship just puts my back up. It was a big problem back in undergrad – my partner had all the ideas and I felt like I was being swept along for the ride, and I had no idea at all what I was doing. It’s all so different now. I don’t know what happened in the two years between undergrad and postgrad, but I grew a backbone, that’s for damn sure.

Not helped by the tech that record the data screwing me around royally the other day and not actually recording anything, so I now have virtually nothing to work with. Joy of all joys.  And I have to deal with people. Wow. It’s so awkward. But I do have a script. A literal script.

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Anyway, as I said, dear audience, please bear with me while I sort out the whirlwind that is currently my life. I want to expend a bit more on small details vs big picture vision, and I’ll keep you updated on the dissertation research (without going into too much detail, obviously). It’s just all a bit much to juggle.

Have a good week, and stay awesome

Scan Initiated

Good evening, one and all!

First up, a couple of announcements. The first is due a change in schedule, I’ll be changing the update day of this from Thursday to Friday – reason being we’ve just been slammed with a compulsory three-hour stats lab on Thursday afternoons, which is fine, but leaves me mentally a bit wiped out. Therefore, happy Friday!

Might also mean I get it out a bit more regularly than I have been for the last couple of weeks! I’ll confess half of that is fatigue and half of that is my piece of crap laptop screwing me around again. The fix was, weirdly, removing my anti-virus software, so I’m feeling a bit virtually vulnerable right now. Is it going to stop me illegally streaming Yuri on Ice? Absolutely not.

But anyway, after the angst of a couple of weeks ago, and with blowing all your minds with cute on mindfulness, I want to talk about something cool that happened last week – namely, that I got to have a go in an fMRI scanner.

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For anyone who’s not familiar with MRI (or Magnetic Resonance Imaging) technology, what a normal MRI scan does is take a picture of your brain or body in the state it’s in at a given moment, by aligning all the water cells in your body to a strong magnetic field and measuring the time it takes for them to realign themselves back into their natural state. Different tissues have different amounts of water in them, hence the multi-layered image. An fMRI (Functional Magnetic Resonance Imaging) takes it one step further and, as the name would suggest, scans the brain as it functions, using the level of oxygen in the blood – the BOLD signal. Not in real-time, unfortunately, we’re not that good yet, but with enough spatial accuracy that we can pinpoint the areas which are active when performing a cognitive task. It’s not something many people will get to do outside of research or a clinical procedure – and even then it’s so expensive to run that even within research it’s not something which gets used a lot – and I consider myself quite lucky that I got to take part.

The scanner itself is, in its purest form, a huge spinning magnet, so before entering the scanner I had to take my hoodie off (metal eyelets), all my piercings out (for obvious reasons) and answer a bunch of questions about my dental history (though it turns out normal fillings are just fine). Getting stuck to the inside of this thing is, I imagine, not fun. There are some really funny videos somewhere of a bunch of research scientists mucking around with the magnetic field (because we’re serious academics doing serious academic things), and this thing is seriously strong. Like, 30,000 times the magnetic field of Earth kind of strong.

Not that I was worried about this, or anything.

Nah, that was fine. I was more worried about the fact that the hole my body was being inserted into was no more than a couple of feet across, if that. Which makes sense if you’re trying to take an image through someone’s skull. It’s the same principle as X-Rays – you have to get up close and personal before they can get a decent image. And two sets of ear plugs. Think of a pneumatic drill being used right outside your window and then turn the volume up a bit – that was what it would have sounded like without them. It was still loud as hell even with them in. So as I’m sitting on the ‘bed,’ if you like, the researcher makes me plug my ears with those soft foam plugs you get in nightclubs and on shooting ranges, and then put a pair of ear defenders over my ears as well. I had to yell “What?” a few times before I could hear whatever else he was trying to say; which was a good thing. Then I lay back into the headrest, which was like a scoop with a cushion inside, had my knees propped up by a triangular cushion, and was handed a button box and told, ‘Just relax.’

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And then the scary part. So the hole through the scanner is a bit like a classic doughnut – it goes all the way through and out the other side. The screen where the task I’ll be doing is on the other side, but to see it, they had to fit a kind of mask or clamp over my head which had a mirror attached to it. It wasn’t flush with my head but it was close enough to be weird. It took a couple of tries to get it right – for some reason the attachment wouldn’t fit on the headrest – but a few minutes later it was fixed and I had a front seat view of the approaching back of the scanner as they rolled me into the tube. Remember how I said it was only a couple of feet across? I moved my arm to try and get comfortable and instantly whacked the side of it. Big incentive to keep still. (And you need to keep deathly still or the images come out fuzzy). I’m actually okay in confined spaces – at least, I prefer them over wide expanses, definitely – so once I was in there it wasn’t a big deal. The big deal comes next.

As with basically anyone who has autism or autistic traits, I have an absolute horror of sudden loud noises. If there’s one thing guaranteed about fMRI scanners, it’s sudden, loud noises. So the starting of the scanner was the most terrifying part. The headphones muffled the worst of it but there was a series of dull clicks and then a sudden, huge mechanical whirr, and I felt the thing shudder to life. But then, once that was over, I started to relax. It made a rhythmic series of loud clicks – and rhythmic is the key word here. I like rhythmic. It’s predictable and I can deal with it. That was the initial anatomical scan. The researcher can talk to you by intercom, so he comes over the airwaves and he says, “Okay, we’re gonna start the real scan now.”

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I was expecting more of the same. Oh no. Louder and bleep-ier. But still rhythmic, so once I’d gotten used to it, it was easy to tune out. But this point was when I started to feel the magnet. Like weird sort of pulling pressure that started on my right and moved around me slowly as the scan kicked into life. Suddenly I was glad they made me take my piercings out.

Another thing I never expected was the warmth. It’s a huge piece of electrical equipment, not to mention the magnet inside is spinning at stupid-RPM and kicking off a vast amount of heat. Never heard the air-con come on though, even though it must have because I never broke a sweat. The task itself wasn’t all that interesting – just looking for duplicates of pictures and whacking a button on the button box – so between the two of them I almost dozed off. Four blocks of that separated by another anatomical scan – by which point the cushion on the headrest had developed a ridge that was digging into the back of my skull. Never moved my head though – ‘remarkably still,’ he said afterwards, so score one for my pain tolerance!

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Just goes to show, I suppose – there are some situations where you just gotta relax and let it all happen. This does not ring true for 95% of my life, but for the moments it does, I do cherish them.

Though maybe not so much when I got out of the scanner and my head refused to stop spinning, from being lying down for so long. You win some, you lose some. At least I didn’t actually faint.

So, yes, an experience. One I would recommend to anyone who is neither claustrophobic nor scared of loud noises. But they all do their best to make sure you’re comfortable, and the panic button is always there if you need it.

And I get a cool picture of my brain to yell at whenever it starts messing me around.

Stay awesome, everybody.

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