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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Taking Care

Evening all,

This week is Dementia Awareness Week over here in the UK, so I want to talk a bit about my grandma.

I read once, in a book discussing witchcraft practices, that it often skips a generation, like a grandmother teaching a granddaughter how to make crafts. When I think of my grandma growing up, that’s how I think of her. Not as a witch (I think she would have had an aneurysm if anyone had called her a witch, although she happily helped me with making broomsticks and witches’ hats during my ‘Worst Witch’ phase), but teaching me how to knit and sew and plait, and make cards and bookmarks with stickers and fine-liners. She was active in the WI as well, doing much the same thing in her community. But when my grandpa died, it was like a switch flipped. I remember her saying ‘Losing your life partner is a very different kind of loss.’

She wasn’t wrong. The initial depression passed, sort of, but the agoraphobia and anxiety didn’t. Then she started forgetting where things were, and when things were, and having conversations twice. She was diagnosed with dementia – Alzheimer’s – about two years ago now. The last time we met, she didn’t recognise me until I took my hat off. That was last Christmas. I doubt she’d recognise me at all now.

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It’s sad, in some ways. She, who was once so independent, who used to bodily turf Grandpa out of the kitchen so she could bake or cook, who had no issues teaching me some respect for my elders, is now almost totally dependent on carers and nurses. She, who could talk for hours about her family, and what it was like when she and grandpa were first courting, now has trouble remembering what was said five minutes ago. But in other ways, she’s very lucky. Dementia itself is insidious by nature – cognitive changes which occur suddenly and devastatingly tend to be result of stroke or traumatic brain injury.  Grandma never noticed the decline, or never cared enough to point it out. A report released earlier this week by the Alzheimer’s Society stated that 48% of people with dementia said they feared becoming a burden, and I think that being aware of the loss of memory and identity that comes with most forms of dementia is possibly worse than simply having the disease itself. But she’s happy where she is, and that’s the important bit. As long as she’s happy, I can’t feel sad for her. I feel worse for my dad and my auntie Helen, who are shouldering the majority of the administrative burden and who, unlike grandma, are more than aware of the decline.

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It’s not an isolated story, either. I used to do a lot of phone work for a charity for the elderly, and the number of people phoning looking for advice regarding their parent who had just been diagnosed with dementia, or a person with the early stage of dementia themselves, was astounding. And this is without the Tories’ latest social care policy announcement, which could see many people robbed of their assets to pay for their social care after they die; their new means test places people with assets of over £100,000 on the ‘rich’ end of the spectrum – well, okay, but included in this means test is the value of their home, which, unless they’re living in a council flat, is highly likely to be over £100,000. Considering it was much easier for a lot of people to buy their own homes back in the 50s, this means that, simply for having social care needs, a pensioner with dementia and their families could lose everything. They’re terming this ‘the Dementia Tax,’ and it’s clear why; those living with chronic and debilitating conditions which severely impact their ability to live day-to-day, like dementia, are those likely to be hit hardest by this. Rightly so, there are many calling this both ‘grossly unfair’ and ‘electoral suicide’, among some less savoury words – it strikes some of, if not the most, vulnerable people in society. Yes, in a lot of ways, my grandma is very fortunate; she has savings put aside for this scenario, and she has family to help her out. With any luck, she’s set to be happy where she is until the end of her days.

On a more positive note, I’m running 10km next Sunday in Manchester, in aid of the Alzheimer’s Society, who commissioned the report cited above (the whole thing is well worth a read) and who aim to support those living with dementia and their families, both at home and in the community. My JustGiving page is linked below, but don’t feel obliged to donate. Just, maybe have a think about what you’re voting for, before you cast your ballot – in the UK or elsewhere.

Stay awesome, everyone.

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Happy Hallowe’en!

Yes, it’s that time of year again – every kid dresses up as either a zombie, a witch, or Batman and starts combing the streets for sweets. Their parents desperately try and get them to sleep afterwards. The shops begin filling with Christmas things. Fake cobwebs reign supreme and that spider on the table is (hopefully) plastic.

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All kidding aside though, I love Hallowe’en, despite it’s commercialisation. I love this time of year as well – everything turns a really nice, warm colour which is comforting despite the drop in temperature. I get to break out my scarf collection the sunlight turns everything buttery and lovely.

So some things about Hallowe’en you might not already know.

It’s not actually called Hallowe’en. The word Hallowe’en itself is a corruption of All Hallow’s Eve; which unsurprisingly occurs the day before All Hallows. This is a Christian holiday that takes place on November 1st and may also be known as All Saints Day. Traditionally the dead are honoured, graves are attended to and tidied, a special Mass is said.

All Hallow’s Eve itself was another of the Christian Church’s way of imposing their religion on the masses way back when in the Middle Ages. All Hallows replaced Samhain (pronounced So-wen), which is a pagan holiday about – guess what- honouring the dead. It’s a Greater Sabbat, and it’s the night when the veil between the worlds of the living and the dead is thinnest. A good time for divination and for honouring the ancestors that came before us.

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To bust a couple of myths that annoy me while I’m here;

  • Blacks cats were believed to be witch’s familiars (a demon in a benign form that aided the witch in her evil spells and midnight demonic rendezvous). Hence unlucky.
  • 13 is the perfect number for a witch’s coven – again, hence unlucky thirteen. For this reason I consider thirteen a lucky number. It’s amazing what a shift in perception can do.
  •  Sacrifices do not mean live sacrifices. Usually it’s flowers or food. We’re not complete psychopaths.

It’s simple, then, to see where the whole ghost/witch/skulls/general spooky theme comes from. No matter which belief system you ascribe to, this time of year is certainly the time of the dead, with rites of some form or another going on right across the world. Though why the spiders have to get involved I just don’t know. I hate spiders. Even the plastic ones.

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It’s not even so much about celebrating death. It’s about celebrating the cycle of things. Our ancestors may leave us, but they also leave their lessons, and if we listen to them, I don’t believe they’re ever truly gone. And honestly, death is a very natural part of life. It has it’s place in the cycle just the same as the Beltane fertility rites in May or the return of light into the world at Imbolc (Candlemas in mid- February).

So, yeah, I love this time of year. It’s a quiet time of year. I outgrew trick-or-treating a while ago. While I was an undergraduate it was a Hallowe’en Corp night out in Sheffield wearing as much fake blood as was tasteful (or not…). These days it’s brownies or traybake, my Samhain rites and bed. And wine. Makes me sound like an old woman (which I’m not, how dare you), but there are other ways to enjoy Hallowe’en. Pumpkin carving, baking, stressing over assignments (this year anyway).

And hey, any excuse for sweets.

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Be nice to black cats should one cross your path. They’re not unlucky, most of them are quite friendly. If you see one being hurt at this time of year, please do something about it!

Stay awesome, and Happy Hallowe’en!

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Destroy The Stigma Around Mental Illness

Stigma: a strong feeling of disapproval that most people in a society have about something, especially when this is unfair

To Stigmatise: to treat someone or something unfairly by disapproving of him, her, or it

Definitions according to Cambridge Dictionaries Online (source link)

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Speaking as an almost-ex-depressive (as in, I’m three years out of therapy but the bad days never quite go away), stigmata and stereotypes around mental illness do exist, and I’m willing to bet they are one of the most popular reasons people will not seek help for the condition they have. It was certainly one of mine.

Speaking as a psychology grad, if it hits you, it hits you very idiosyncratically which, as with most mental illnesses, makes it hard to pinpoint. I’m not going to go into massive amounts of detail about what depression is; suffice it to say, it can hit anybody and whether or not you get it generally comes down an unlucky hand of cards – I ascribe to the idea that it’s a combination of family history and the way one reacts to the world.

By this time, many of you will have heard of the crash of Germanwings flight 4U9525 in the French Alps on March 24th, tragically killing everyone aboard. It’s since come out in investigations that the co-pilot sent the plane into its fatal descent deliberately. The latest report from the crash investigation states that the co-pilot had been suffering from depression for some years, and had ‘hid this from his employers.’

And with the stigma that surrounds mental illnesses, I almost don’t blame him.

There are careers that require you to be mental illness free for upwards of two years – mostly in high risk occupations such as careers in the Army and the police force. This is not the result of stigma – this is in the interests of personal safety. Anyone seen the bathroom scene of Full Metal Jacket? In careers where they teach you to fire guns for a living, they don’t want the insurance nightmare. Which to be perfectly fair, is understandable (if annoying to be on the other end of – been there, done that, but that’s a story best left out).

Inferring in part from the report, flying is another one of those careers where they like you to undergo some kind of psychological evaluation before letting you fly a plane. Again, understandable if they’re going to let you control a massive metal tube flying 38,0000 feet in the air with hundreds of people on board, supervised or otherwise. But these tests are far from standardised, and because of this, there are calls now for more rigorous, standardised testing.

Which is utter bollocks.

Talk to anyone who’s done a psychology base degree – hell, even a psychology A-Level (or equivalent). They will tell you that there is no such thing as a reliable standardised test, because there is no such thing as a standard mind. As a point of interest, among the first standardised IQ tests were a set of tests created to “scientifically” prove that some people were of substandard intelligence – as in, specifically designed to make them look stupid (see here and here). In the same way, accidents occur, or crimes are perpetuated, in which a mentally ill person is involved. And suddenly everyone with a diagnosis, or the same symptoms becomes dangerous, or incapable, and generally substandard.

A fantastic post by a writer for the Guardian throws it into sharp perspective. I, personally, haven’t noticed any outright condemnation of people with depression in the media – but we wouldn’t, because wouldn’t that cause a public outcry. What we see instead is a very subtle chain of association. The German newspaper Bild calling it ‘his madness.’ The BBC releasing editorials examining screening process for pilots, asking how pilots with mental illnesses slip the system. Talking about his lifestyle and hobbies as though the condition he had was some dark and twisted secret.

As a species, we are hardwired to put people in boxes – it’s a survival thing. It’s when we begin to put people in the wrong boxes, or assign them boxes they don’t fit in, that problems begin to occur. This stigma around mental health issues makes asking for help something of a minefield, and it shouldn’t be. We should spend less time worrying about screening procedures and more time worrying about supporting these vulnerable people through the bad times and out into the better.

I’ll finish on a word from the mental health charity Mind:

“Clearly assessment of all pilots’ physical and mental health is entirely appropriate – but assumptions about risk shouldn’t be made across the board for people with depression, or any other illness. There will be pilots with experience of depression who have flown safely for decades, and assessments should be made on a case by case basis.

Today’s headlines risk adding to the stigma surrounding mental health problems, which millions of people experience each year, and we would encourage the media to report this issue responsibly.”