I’m just surviving…

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This post, that I discovered via Inner Aspie, rings very true for me.

Once again, I’m wandering round the house on my day off, feeling jittery and close to tears, my skin prickling. I can’t listen to music because I can’t take the additional sensory load. I can’t cook because of the smell. I can’t work in the garden because the sun is too bright. Of course, I could force myself to do all these things,, but you know what? I want to do them and enjoy them, just like any non-autistic person would. I don’t want to push myself through things that should be pleasant, colouring them with overload and formless anxiety.

The only good thing to be said for this is that at least I now have an explanation. I’m not a useless procrastinator; there is something happening that makes me feel this way. Of course there’s also this, the knowledge that things aren’t going to change, the infuriating knowledge that whatever I do I am going to waste a lot of my life like this.

I was educated in a tradition that said that if you don’t have something tangible to show for your efforts at the end of each day then you are a failure. Try as I might, I cannot shake off that lingering voice in the back of my head. Look at that weekend, it says. You spent half of it sitting on the sofa reading, when there was all that stuff needed doing. You have a long list to get through and you’ve barely touched it. You are a failure.

I’m still adjusting to this knowledge of my difference. I’m still holding up my experience, examining it, asking is this autism? or is this just me being a failure? and trying not to conflate the two.

But I have stuff that needs doing, and this damn sensory overload is standing between me and getting it done…mahfaceitgo128397453235625000

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What autism feels like #1

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landmine

One of the difficulties as an autist is that there are often no words that describe my sensory or emotional experiences. It’s a bit like trying to describe the taste of cucumber to someone who has never eaten it.

So, today I am going to describe how it feels when something that should happen, doesn’t. That feeling which is often called wrongness, that can increase anxiety and panic. The thing is, the anxiety and panic are a consequence, they’re not the actual feeling. And wrongness doesn’t really translate as a feeling for a NT.

The closest I can come is the feeling when a close relative dies. Someone who has been part of your life every day for years, who inhabits the same house, whose existence is twined with yours. And suddenly they are not there, they will never be there, and the world feels broken, out of kilter. Your brain keeps trying to think of a way to make it right, to bring that person back where they belong, and the knowledge that it can’t actually done tips you into grief and panic.

That’s how I feel when something unplanned happens, when something goes wrong, something changes, when people start arguing… all sorts of things can trigger it. I want to shout at it to stop, to go back the way it should be, to resume the safe, expected path. The loss of an expected event, the change from normal behaviour to anger, these are bereavements and they send my brain spinning as it batters against what is, trying to turn it into what should be.

I’ve learned to lock down the panic, to resist the need to run away, to keep my hands in my lap and not cover my ears or hit my head. I struggle to follow conversations and ask people to repeat things again and again. Exhaustion is only a step away.

Eventually, minutes or hours or days later, it stops.

And I keep putting one foot in front of the other, walking across a landscape that is mined with episodes like this. I don’t know I am going to tread on one until it explodes underneath me. I don’t want to feel like this, but the world gives me no choice.

“The Closer” – fat shaming and LBGTQ abuse

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I started watching The Closer a couple of months ago, working through the seasons on iTunes. At least, I did until I got to the season with an episode entitled ‘Junk in the Trunk’.

The junk referred to is the body of a man in the trunk of a car. After this body is discovered, the police lose control of the vehicle. It runs downhill, slamming the boot/trunk against a telephone pole and crushing the body inside. Then some kind of electrical box falls off the pole, lands on the boot/trunk and explodes.

This scene is played for laughs.

Will it surprise you to know that the dead man is morbidly obese?

I cannot think of another episode where a dead human being’s remains were played around with, crushed and electrocuted, for laughs, but then up until this episode none of the dead people were significantly above a ‘normal’ weight.

Unfortunately I’ve lost the link, but a couple of years back there was a report of an obese woman in the US who was found dead, and whose body was dragged out of her house by police and left semi-naked by the road, kicked and abused by them until a mortuary vehicle arrived. Police were apparently encouraging local kids to join in. So this is not simply a television fantasy.

What is it in human beings that they can treat dead people as a joke? I accept that sometimes people die in daft situations – the Darwin Awards are the best place to confirm this – but abusing and laughing at a dead body simply because it’s fat? Portraying this kind of abuse on an award-winning television show and no one batting an eyelid?

Unfortunately it gets worse.

The episode centred around an individual who was trans (or simply cross-dressing, it wasn’t entirely clear). Xie was brought to the police station dressed as, and identified to the police as, a woman. When it was discovered that xie was born male via fingerprints associated with a male name, the female leader of the police team  attacked xir, punching xir and tearing off xir wig.

Now this was objectionable enough, but the same police officer, in a previous episode, had suspended a junior colleague for punching a paedophile while trying to find out the location of an abducted child. So, the only conclusion to be drawn is that a physical assault on a paedophile is unacceptable, while an assault on a trans individual is not.

There was also the inevitable scene where a male police officer kissed xir and was then mocked by his colleagues once xie was ‘revealed’ to be a ‘man’.

So, much though I have enjoyed many aspects of The Closer, I haven’t watched any more episodes. I don’t like being ambushed by this kind of stuff. The series wasn’t without its issues of privilege, racism and misogyny, to name a few, but they seemed no more overt than any other similar series. But how this episode could get to air without a single comment bewilders me.

What is autism?

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Thanks to recent events, this is a question that I know is going to come up a lot. Curiously, if I reverse it and ask what do you think autism is, I get the same answer every time. It usually sums up as this:

It’s an inability to communicate properly and recognise what other people are thinking.

And maybe I’m a bit slow on the uptake, because it’s only in the last few days that I’ve realised that the majority of neurotypicals define autism as the impact it has on them. When I finally admitted my diagnosis to my mother the email that came back blamed me because ‘I don’t communicate properly’ and therefore the difficulties I have are my own fault. (Which on one level is true, but I did wonder if a paraplegic would be blamed in the same way for their inability to get up a flight of stairs.)

When I think about the day-to-day realities of living autistic, communication issues are not top of the list. And even if they were, they should be the easiest to solve, simply by NTs allowing me the space and time I need to understand or get my point across. And yet this is constantly held up as an autistic’s biggest problem, their major failing.

So I’d like to list a few things that NTs don’t seem to ever comprehend.

Being autistic is…

– sitting at work trying to calculate when the next person will grab my arm or pat me on the back, so I can control the resulting nausea and distress and not lash out. Wanting the comfort of physical contact, just like any NT, and knowing when it happens it will be deeply unpleasant and that no one will understand it, in fact, most people will deny that I experience it this way.

– standing in line at the cinema surrounded by dozens of people all yelling and shoving past me, trying to block out the multiple advertising screens that are flashing different trailers with associated soundtracks, (despite which there is also background music playing) and hoping I don’t see anyone I know because carrying on a conversation in this will bring me to meltdown. (repeat for cafes, bars, airports, train stations where mass proliferation of flatscreens ramps up the sensory overload to an intolerable level.

– waking up each morning to the disappointing discovery that I’m not dead, as I seem to be one of the 30% of adult autistics with near-constant suicidal ideation. Knowing that the rest of my life will be simply putting one foot in front of the other while consistently falling short of other people’s expectations.

– wondering every time I change jobs or someone new starts at work if they will see my awkwardness as an opportunity for bullying, and knowing if they do then it will be written off as a ‘personality clash’, if not outright blamed on me.

– being unable to address serious health issues because my anxiety and overload can peak for months, and there is no way I can let someone touch or examine me.

– constantly losing money because of executive dysfunction issues

– sleeping for 24 hours after a major meltdown

– being labelled as self-harming because I use scratching my arm as an alternative to banging my head against the wall when in meltdown.

– having to sit silent as people who know I am autistic use the word to refer to anyone who is getting in their way and annoying them. Having to sit silent as people who don’t know I’m autistic use the word as a generic insult.

– reading that people in the US think people like me should be locked up as we are all potential mass-murderers. Reading that scientists think research on people like me should be excluded from ethical oversight because we are not fully human and any experiment that might make us human is therefore justified.

– having to spend a lot of time indoors because the constant rush of sound, light and movement outside is hard to process.

– losing my autonomy thanks to people who rush to tell me that there are things I can’t possibly understand so why bother making the effort to explain it.

– being told that counselling/therapy is pointless because I don’t actually have feelings, I just have a computer brain with faulty subroutines and so the only thing worth doing is CBT, because that will ‘correct me’.

– constantly second-guessing my every action and analysing how autistic it is. Constantly trying to hold back from talking to people outside of work because I’m more likely to say something wrong.

– worrying that my interests are actually obsessions and therefore invalid from a normal person’s perspective

– dividing the world into ‘normal’ and ‘me’

Did you doubt it for a second?

Gunman, 20, believed to be autistic

Right, there you have it. Case closed. Of course, some media outlets are describing him as ‘somewhat autistic’, because, well, yeah, that’s in the DSM.

ASAN has a statement.

And if he was on the spectrum? The current autism diagnosis rate is 1:88, so the statistical likelihood of an autistic person committing a crime is not inconsiderable. Add in the fact that at least 85% of us are bullied, both at school and in employment, that we are frequently excluded, blamed, physically assaulted. Remember that NTs talk about the difficulties people on the spectrum face, but when it comes to adjusting their own behaviour in order to help, or even just being accepting of autistic difference, it becomes more of a ‘pigs might fly’ scenario.

People rarely act in a vacuum. Of course, someone can have a psychotic episode, (Remember when the media diagnosis de jour for a criminal was schizophrenia? Then it switched to personality disorder, and now it’s autism. Whoop-te-doo.) but in acute psychosis an individual rarely has the capacity to carry out major crimes. Leaving out those who carry out mass murder for political or religious reasons, the one thing that seems to link shooters is a history of exclusion from the community. And I would be very surprised if that exclusion didn’t go back to primary school.

You don’t have to be autistic to be bullied (but it helps!), and sadly, the majority of adults see nothing wrong with allowing their own kids (or the kids they teach) to bully and exclude, based on disability, appearance, poverty, race… it’s an endless and arbitrary list. And it produces individuals who see their community as inherently unsafe. They will not seek help, they will not tell someone of their despair, rage and loathing, because they have tried in the past and nothing has changed.

Add in the inherent irrationality of the young adult brain and ready access to guns, and you have a disaster. It’s likely many teenagers resort to suicide rather than turning their anger outward. Still more will believe that they can only lead lives devoid of human interaction. But occasionally you will get something much worse.

I believe every life has value. Probably some of the more concerning personality types – sociopaths, psychopaths and so on – also have an underlying structural brain difference that cannot change. But this does not take away an individual’s value. It doesn’t mean they cannot be part of society. To do this, however, society needs to show kindness, and the ability to be open and accepting of someone else’s experiences. The willingness to work to harness everyone’s abilities. The willingness to keep trying, to never walk away.

Parents and schoolchildren have paid an awful price. The long term solutions are not rocket science. Take away guns, the means to kill so many in such a short space of time, treat every one you come into contact with as a valuable person, and teach kids to do the same. Rather than giving lip service to inclusion, work to make it a reality. Watch to see who is being excluded, and work to change that.

Because otherwise, this isn’t going to stop.

Books

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Writers are supposed to read. A lot. My reading tends to go in bursts, and, concentration issues aside, I’ve read a bit recently, so I thought I’d share. Most of my reading is now done on ereaders, in large part because I live in a rural area, but I have read a few ‘real’ books too (and added them to the groaning bookshelves).

Links on the book covers go to Goodreads, from where you can click another link through to your bookshop of choice.

This has been on my to-read list for a while. it’s a crime novel in three parts, set in a future solar system where trillions of people live in ‘bubbles’, like a second asteroid belt. it’s a fairly standard evil overlord setup, and Jack is the murderer and freedom fighter (this is pointed out in the prologue, so I’m not spoiling anything. An entertaining, well-written and thought-provoking romp, with one problem – I didn’t ever care about any of the characters.

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Elly Griffiths is one of my new favourite crime writers. I’m a little sick of the self-pitying divorced/widowed male detective with a taste for whisky and slightly offbeat musical taste, or the slender, staggeringly beautiful female detective with amazing skill at hand-to-hand fighting who every male character wants to sleep with. Meet Dr Kate Galloway, a woman who really is smart and independent, who wears tracksuit bottoms around the house and lives on an isolated area of marshland with her cats. She’s a forensic archaeologist who assists DI Nelson in cases around Norfolk. Within the expected genre boundaries, Galloway is a sympathetic and believable character, and I recommend the whole series.

Beautifully written story of a group of people travelling through England, trying to stay one step ahead of the plague. A brilliant and absorbing read.

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I have lived on the Isle of Lewis, so I’m not sure how this book will read to someone who doesn’t have that familiarity with the landscape and culture. That said, this is an excellent crime novel, holding back just enough information to keep you speculating. Well written, and recommended for those who like their novels to have a spirit of place.

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Some people were startled when I picked up this book – it is a hefty tome, which sadly is going to be offputting to many. It doesn’t, however, read that way. Two separate but linked stories, one a murder in a future Newcastle, where a gate is located that allows people to travel to another planet,. This planet, having no sentient inhabitants, has been set up as a massive biofuel farm, and the world has become very dependent on that fuel’s steady flow. The second story takes place on this planet, where people are beginning to suspect that it may not be as uninhabited as previously thought. Absorbing and very well-written.

[and if wordpress would allow you to have empty paragraphs, the layout of this post would have been a lot easier]

Diagnosis

Things a psychologist said to me last week:

‘You must have got into medical school on grades. They interview now, so they wouldn’t take you.”

[I interviewed for three different medical schools. All of them offered me a place after the interview. They were interviewing around 15 people for every place.]

“you’ll have done lots of [really appalling] things to people but you aren’t capable of recognising it”

[Well perhaps I should just kill myself, then, as I’m clearly of no benefit to society]

‘There’s no point explaining it because being autistic means you won’t understand”

[Would a NT ever accept a statement like that about them?]

There was a lot of other stuff, but I was in meltdown and couldn’t take it in. I do know that after some discussion of how I have serious touch issues, he made me shake his hand at the end. I walked out of the office and promptly got lost, which was even more frightening (I have near-perfect visual memory, meaning that if I’ve walked a route once I will remember it, and this was in a city I’m broadly familiar with).

OK, kitten time:

Calmer now.

The usefulness of a diagnosis is directly proportional to the attitudes and assumptions of those who know about it. That’s stating the obvious, of course, but it’s sobering to be reminded that those who think they know about autism are often those who carry the most damaging beliefs, because they have the power to influence attitudes of everyone around you.

Hypocrisy, thy name is the Church of England

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Couldn’t resist passing this on – the CoE, having just voted against same-sex marriage and women becoming bishops, is now outraged that the government has specifically excluded them from legislation allowing them to marry same-sex couples.

Wait, what?

the bishop of Leicester said: ‘We didn’t ask for it’ … and was very upset about it because it gave the impression that the Church of England were unfriendly towards gays.

So telling same-sex couples that they are not entitled to get married because they’re not ‘real’ couples is being friendly, but government legislation to exclude a homophobic organisation is not?

What gets me about organised religion is not just the things they do, but how, when they get caught out, rather than quietly admitting their hypocrisy and/or appalling behaviour, they go on the offensive with absolutely no insight whatsoever as to how they look from the outside.

Search terms – a warning

You all do it. Those of you who blog, I mean. The searches people use to find your blogs are one of those curious facts (as well as a window into the strange world of search engines). But sometimes it’s really depressing to see what brings most searchers to your pages. I’m afraid I have to stand as an awful warning to other bloggers.

As a result of this post, the top eight search terms for the last year have been some combination of:

[December holiday] + [humour] + [felines]

I daren’t type the actual words for fear of making the situation worse.

You have been warned.