Social Media and Autistic Health..

Once more I’ve stepped away from Twitter. Stepped away in case I say something I later regret. 

I’ve mixed feelings about doing so but, in all honesty, mixed feelings about social media itself and it’s benefit, or not, to me. 

I used to use Facebook quite a lot but the shine quickly wore off that particular outlet and I post, perhaps, two or three times a year. It’s become an outlet for holiday snaps rather than a tool for interaction. I don’t find it user friendly nor particularly helpful. 

I joined Twitter because everyone else was. 

It has its occasional uses. The opportunity to interact with others, particularly those on the spectrum, but those interactions I have found, in the main, unfulfilling and occasionally quite scary. 

I think that what I’ve found is, within the Autistic community, little cliques that form and I usually….always, find myself outside looking in. 

I don’t know. I don’t know why I feel that way. Just what I observe. People grouping up, ganging up, cliquing up..

It’s all about establishing connections. I find that in the real world outside Twitter. Connections are based on mutual interests and yes, it’s quite had to establish connections around snakes and exotic travel. The latter is easier than the former to be sure but even so, very few people I know, travel outside Europe. I don’t feel connected to anyone on Twitter. I am unable to form attachments as much as I’d really like one or two people I could talk, really talk, to. 

Much of social media is devoted to the causes, “cures”, awareness and acceptance of Autsm. My input here is very limited. Cleverer minds than mine deal with stuff like that. Much of what is written goes over my low functioning head. Personally speaking I think more people are now aware of Autism but accepting it, understanding how it affects us, how we see the world, is harder to get through. Even my partner of eight years struggles, at times, to get “it”. 

I find Twitter frustrating. Sometimes I tweet because I’m hoping for a reaction and disappointed when none comes back. Sometimes I’d like support and don’t get any so that leaves me feeling isolated. Sometimes I tweet just to remind people I exist. 

The downside to tweeting is the volume of tweets from people you follow that hit your timeline. I seem to start online conversations in the middle third. It can be hard to follow interactions and threads and who answered who. And then there’s retweets. Hundreds of them. 

I try not to retweet much. I don’t follow celebrities as such and I don’t want their inane views or them telling me how to vote. I find that intrusive but people can retweet what they like so I can’t stop it. But it does affect me in a sensory way. It’s cluttered. It seems chaotic, disordered and I find myself feeling as though I am under attack. 

Perhaps I’m overly sensitive. 

But now, at this point in time, I’ve got to step away. 

There’s an election looming. That’s not good for Autistic health at the best of times but this constant barrage of tweets and hate filled nonsense spewing forth is more than I can take. I’m tired of irrational tweets, tweets that expect the unrealistic, the illogical. I can’t cope with the extremes being rammed down my throat. 

So I might say something I might regret. 

Social media, at this point in time, is not good for my Autstic mental health. 

I’ll see you around. 

Assaulting the senses. A brutal Autistic work day. 

Yesterday was a brutal day. 

Absolutely brutal. 

Work was merciless. From the moment I got in till the moment I left it was simply incessant with numerous demands on my time. Lunch vanished in a flurry of emails and calls. 

The trouble that brings is twofold. Firstly, it wears me out mentally. There’s no hiding from the sensory assault on my Autistic enhanced senses. My ears ring, my head throbs and quite quickly those defensive barriers in place begin to crumble. It’s a struggle for survival where all I can do is grit my teeth and hold on. I hate days like that. There’s no chance to breathe, no opportunity to catch my thoughts or my bearings. It feels like constant tidal waves smacking me heavily into the shoreline, bruising me, battering me. 

The knock on effect is the physical toll. Starting from a position of having fibromyalgia I’m tired, hurting and struggling before the day even begins. 

Add in the mental thumping and I’m not a pretty sight when I get home. (Point taken. I’m never a pretty sight!) 

When colleagues seem to be feeling the same way I take that as endorsement that it’s “not just me”. It’s not just an “Autism thing” that’s happening. When colleagues start shaking their heads, rubbing eyes, complaining of headaches and throw the phone down in disgust, I’m kinda getting that we’re all feeling the same. 

To different degrees. 

It’s all about tolerance. My limits are low. I grit my teeth early in proceedings. I can feel the physical pressure rising. I can feel a head of steam building up. I want to go bang!. I hit the barrier by mid-morning. If an NT colleague hits theirs around midday I can judge that it’s bad for most of them as well. 

Yesterday was brutal. Short of our usual numbers, trying to keep everything in balance because I know that, not working Fridays, my inbox on a Monday will be heavy already without yesterday’s residue and possibly today’s build up as well. 

It took all of my energy to get home. To slump. To eat. By mid-evening I didn’t even have the energy to watch television. I was anxious, irritable, fed up. Everything you can think of. I couldn’t concentrate. I was at melting point. I couldn’t cope with even the simplest interaction. I’d used up my spoons, elephants, snakes, didgeridoos or whatever it is you use to get through. I was running on empty. 

And actually the repercussions of days like that are not twofold, but threefold. 

I couldn’t sleep properly. I was too tired. My body was too painful. Brief snatches of sleep were interrupted by vivid nightmares. I tossed and turned, I wriggled, I stretched, writhed and moaned. I felt heavy, trapped, angry, frustrated, in turmoil, sick, nauseous and a hundred other things all brought together in one tumultuous package. 

So I was up at three forty five! 

Recovery takes time. It takes a long time because I don’t really recover. Each day like that takes a little part of me, gone forever. 

Yesterday was brutal. 

I’m sure it won’t be the last time…

Trust, Autism and Politics- What a mixture! 

Apparently there’s a General Election (GE) in the offing! 

Politicians eh ?. There are local elections on the 4th May but by announcing it too late Mrs May has meant I’ve got to vote twice in a short period of time!. 

Oh, did you see that, I called her Mrs May. Not some swear word or derogatory term. It’s Mr Corbyn, Mr Farron, Mrs Sturgeon etc. I don’t agree with people demeaning the office they hold by using vile epithets. 

And that’s what we’ve been reduced to. 

I can accept anger and indignation but the way to persuade is by reasoned argument. Cleverly (actually not) rhyming Jeremy Hunt with c**t is just, to me, deeply depressing. I just don’t see the need for it. Yes I called George Osborne deeply unpleasant and cruel but I didn’t need to swear to make my opinion known.  If you resort to vile language then there is simply no way I will accept any argument you make. I won’t be persuaded by bad manners and rudeness. 

Politics is about trust. Who do you trust to run the country and get us through Brexit ?. Who can handle the economy ?. Who do you trust on the NHS ?. 

As someone who lives in a state of constant, if hidden, agitation and anxiety, those questions take on an extra importance at election times. Is there a party that I feel, best represents the interests of Autistic people ?. 

So let’s start with the Conservatives. Ahead in the polls for reasons that are zero to do with popularity but rather the weakness of the opposition. Hated, you would think, by every NHS worker, lawyer, doctor and every other person whose lives seem to have been affected by austerity. The disabled must loathe them and all they stand for. They’ve overseen a divisive and costly Brexit referendum and seem only to be interested in their own kind. Surely they stand no chance of winning ?. 

Then there’s Labour. Run (term used loosely) by Jeremy Corbyn who is, in every respect, a thoroughly decent man. A man of the people with a conscience but let down by the rather sketchy support offered him by his cabinet and MPs. A man of such honest straightforwardness can surely appeal to enough people to bring Labour back to power ?. 

And, last of the big three, the Liberal Democrats. Surely, under Tim Farron, another decent bloke, this is the big breakthrough election for them, this can be their time ?. 

So, who to trust ?. 

You have read so far and I bet you’re thinking Labour or Liberal ?. 

Well, being honest the actual answer is……none of them. Much. 

I’ve already mentioned the Tory weaknesses but I have to admit they’re probably the most honest of the lot. Honest in the sense that you know who they stand for, you know they’ll be nasty, you know they’ll make cuts and you know you’ll suffer. But they’re still not trustworthy. 

Labours problems lie in the fact that they think money grows on trees. Twitters a very left wing media outlet but I do find it worrying to find so many people blindly believing that there won’t be cuts and every disabled benefit will increase and every social wrong righted when Labour actually have no plan to create wealth. Mr Corbyns admission that we shouldn’t be afraid of debt, especially with a Brexit bill looming, is not an admission I find comforting. Hard to trust a party that doesn’t really have a plan. 

The LibDems are hard to trust simply because they’ve been out in the wilderness for so long. I’m not sure of their identity and perhaps they aren’t either. Trust needs to be built and developed and they’ve not been in a position to do that. 

Food for thought. 

I’m not telling you how to vote. I just ask that you do. Use a democratic right that people died to get for you. 

But don’t vote tactically. 

Have the courage of your convictions, not somebody else’s. If you can’t actually vote for the party you want then why vote at all ?. You simply disrespect the process and admit that you have no belief in your party, that they can’t win, won’t win. 

If you’re afraid another party will win then vote for who your party. Don’t vote simply because you’re afraid another side might win. 

What does that say about who you trust ?. 

There are six weeks till polling day. Six weeks of country dividing, deeply unpleasant news. I’m an Aspie, I hate confrontation, elections make me nervous. 

Who to trust ?. 

Trust yourself. Trust yourself to vote for the party you trust. 

Go for it!. 

Tribe or Community ?. What I see, what I hope for. 

Are we a tribe ?. 

Are we a community ?. 

Tribes are social groupings with social, economic or blood ties, usually having a leader. 

Communities are a group of people in the same place or sharing a common characteristic. 

Those loose definitions would, on the face of it, indicate the latter. We share the common characteristic of Autism. We might be linked socially, possibly economically, potentially by blood but we don’t have a leader (although there are those who clearly think they were born to lead!). 

I’ve never liked being part of a tribe. I’m not sure what it is, not sure why I say that but, to me, the word conjures up tribal warfare, an antagonism towards others. Behaviour that is aggressive is often described as tribal. I think of Africa and it’s huge cultural diversity and television programmes such as “Tribe” which only seemed to reinforce ancient enmities towards other tribes occupying or seeking to the occupy the same land. Perhaps, subconsciously, that’s why I couldn’t “get” Steve Silbermans “Neurotribes”, because of that word which didn’t seem to fit me. So, whilst reading it, I felt removed, apart, alienated by the title and therefore the content. 

I’d like to think we were a community. It sounds…. friendly. It sounds….. together. 

I’d like to think. 

But I’m not sure we are that either. I think we are close to it but not “it”. 

I’d like to think we’d work together “for the good of the community”. I’d like to think we’d pull together in a calm, measured way. But ego tends to get in the way. 

We don’t work together because some individuals want to be in charge. They want to be leader. You can tell them by their self description. “Highly educated”, “High functioning”, “Intellectual” and the like. I’m not even sure what highly educated means ?. Degree ?. Masters ?. PhD ?. And does it matter ?. High functioning ?. Set against ?, low functioning ?, not functioning ?. And intellectual ?. Are these phrases designed to intimidate ?. 

Saying these things makes me wonder (again) about the tribe/community conundrum. Are these individuals more worthy of being listened to than anyone else ?. Are their views and opinions of more value ?. 

No. 

I’ve no doubt they’ve read the research, know the diagnostic criteria inside out and can quote it chapter and verse. 

Those are not tools by which to intimidate or subjugate!. 

I’d like the think we were all equal. That all our individual experiences counted the same as each other’s. That we were all given due respect and fair hearing. That, as a community, we pulled together and felt we could express an opinion without being shouted down because it doesn’t match someone else’s. 

I’d like to think people cared. 

I care. 

I care about us. I care about the future. I want us all to be happy in our Autistic skin. I don’t need competition or people thinking they’re better than me. I have enough self esteem issues as it is without you adding to it and beating me down. 

Tribe ?. Community ?. 

Probably somewhere in between. 

Autistic discomfort and why Twitter needs a break

I’m not tweeting at the moment. 

I’d like to. There are things I’d like to say but nobody is listening so I’ve stopped trying. I’ve given up. After a long interaction with The Samaritans even they let me down, leaving me unsupported and quite disdainful of my predicament. So, throwing my hands up in despair, I give in! ..or give up..

Part of my discomfort comes from the “community” itself. I’ve said before that I don’t feel I fit in and recent events, or the continuation of events, has only reinforced that viewpoint. 

We’ve become too needy. 

We continually complain about wanting acceptance or awareness and yet, every time an NT says something, even though it might be blunt or a little thoughtless, we have a go at them. We describe their comments as “outrageous” or “appalling” rather than “uneducated” or “misguided”. Theres too much aggression. 

Sometimes, what people say to us, are just observations. They aren’t packed with ill intent. There’s no harm intended. Yet we bristle, we get indignant and seem unable to accept that, sometimes, there are no deeper meanings!. No hidden agendas. 

If someone tells me my eye contact is better or I seem less fraught I don’t treat that as being awful or a terrible thing to say, I just accept that is another persons view of how I am in that moment. I might not agree with their observation but it’s not harming me. 

We are too down on NTs. Most of us with official diagnoses have, I suspect, been diagnosed by NTs. But then we will start criticising them, telling them “they don’t know what they are talking about!”. So their diagnosis of you must be wrong then ?. Of course they come out with the occasional inanity (Baron-Cohens “male brain” springs to mind) but then so do we and we should stop pretending we are incapable of saying or doing stupid things!. 

We fawn. 

Yes, we fawn over each other. Just because a book is written by an Autistic author it does not make it the “best thing ever written”.  There might be greater empathy with the authors viewpoint or character but it’s not the “best thing”. The same goes for blogs. There’s support and then there is fawning, this over abundance of praise that goes beyond the natural to an over amplification to such an extent that I’m immediately put off the original work because it simply can’t be as good as is made out. 

If I like a piece of writing I will like it. I will click the like button. Very occasionally I will comment. Very occasionally. I do so because I am wary of the fawning trap. 

Most of what I write is trite. This is probably crap as well. I’ve written what I consider good stuff that gets ignored, I’ve written bad stuff people have liked. Yes I know people are entitled to their opinions, these are mine lol, but just because a book is about Autism or by an Autistic author, it isn’t worthy of such abundant praise. There’s good and bad in both the Autistic and NT spheres, but we seem, at times, incapable of objectivity. 

One of the reasons I’m uncomfortable is the use of the word “tribe”. It’s what some of us have become, very anti-NT, very ….well…tribal. A “We are better than you” stance. We are not better, we are different!. Yes the difference should be celebrated but not used as a weapon. We want acceptance, we want awareness but we don’t want to educate ?. We just want to crush every observation with a response that we are outraged ?. Why are we so narrow minded ?. We see the worst in people rather than the best. 

I’m greatly disenchanted at the moment. I’m withdrawing from the world and from a community that I don’t recognise as being one I’m comfortable in. I’m adopting an isolationist policy for fear of greater hurt by my so called empathetic brethren. 

I’m taking a break from tweeting. I no longer know how to react to things I’m reading. I’m scared I’ll say the wrong thing, to the wrong person, in the wrong time. 

I think it’s best to be on my own. 

Morning has broken..

It’s Monday. 

I hate Mondays. Start of the working week. Start of another week crammed full of Autism unfriendly situations. People. Noise. The vagaries of temperature control. 

I’m sitting on the sofa in “my spot”. It’s my spot because it’s where I sit. Not at the other end.  Don’t like the other end. Sitting there feels strange. It’s uncomfortable. Alien. Odd. 

The clock in the hallway is clacking and whirring. Once upon a time that was an annoyance. A sensory assault but now it’s part of the background noise, soothing, regular. When I lie awake in the middle of the night I can hear it tick ticking away in the dark. It’s like the worlds heartbeat, it’s telling me that everything’s alright, that the worlds still turning. 

It’s 6.36 and I have been up for precisely 24 minutes. 

There’s a low hum in the air. Inaudible to most but the hum forms the baseline for all other noise. The clock, the occasional car passing outside, the soft cooing of the birds on the telephone wires. The Monday morning melody makers!. 

Or perhaps the hum is the dough and the rest are just audible pizza toppings! 

It’s 6.40

Bad night. Sunday nights usually are bad. Poor, restless sleep, up and down like a yo-yo (another activity beyond my feeble coordination), bad IBS attack, dry retching, stiffness and soreness. 

Crammed full of anxiety, nervous, dry mouthed, swollen and sore tummy. Yes it’s certainly Monday again. 

6.43. 

I should be home from work in precisely 9 hours time. I say should be because that’s subject to being picked up on time. I have little control over the traffic on the country lanes or my partners memory!.. ‘What was I supposed to be doing at 4.30 ???”…

Morning. 

The sky’s quite bright but after a weekend of warm, unbroken sunshine, it’s much cooler. A white sky, not a blue sky. 

Cat one has taken up her position on the windowsill. Ever vigilant she scans the road and car park outside for signs of unwelcome visitors or extra breakfast. I know which she would prefer. 

6.49

In precisely 31 minutes I will commence coffee and tea making. Coffee for myself, tea for my other half (though she will only wake up when it’s gone cold). I’m not much of a breakfast person. Full English is too time consuming and messy, toast annoys me (I blame erratic toasters) and we’ve run out of my cereal (Special K with chocolate curls) so it will just be coffee for me. Coffee and pills. Another dose of infighting tables designed to keep fibromyalgia bearable, diabetes under control, acid reflux down and IBS an occasional flare up. 

But because it’s Monday and there’s the extra anxiety involved they’ll fight amongst themselves for control of my body. So I’ll feel even worse within an hour or two. 

Don’t you just love Mondays ?. 

6.56. 

Good Morning. 

I hope you have a wonderful day. 

What would make you happy ?

Have you ever tried to answer that ? 

Of course you might be one of those people for whom happiness or, at least, a state of non-unhappiness is your everyday position. 

But, for me, it’s probably the most difficult question I have ever been asked. 

To begin with I don’t actually know how I feel. About anything. I am uncomfortably numb. I exist and drift through life in a state of self-anaesthesia/sedation where I’m not quite with it. I can see the world going by but there’s this barrier, a bit like a warm, foggy “softness” that’s insulating me from reality. 

It’s odd and I really don’t like it. 

And when you don’t know how you feel and you don’t know you, it’s hard to tell people the things that would make you happy(er). 

We rent and, putting it mildly, it’s a shit hole. It’s damp, freezing in winter as the heatings knackered and we have mould infestations in the bathroom, bedroom and on the landing. But it’s all we can afford. 

So, a decent place to live would make me “happy”. A place of our own. But given that house prices here are crazy, I have a limited budget, we earn minimal wages and we wouldn’t get a mortgage, unless miracles happen we aren’t going anywhere. 

I’d like a dog. I like dogs. We have cats. I like cats. But I like dogs more. A dog to walk, a dog to look after, to get us out. But we can’t have one here. That makes me unhappy. 

I like snakes. I’d like a pet snake. But it wouldn’t make me happy. They are, actually, fairly non-interactive pets unless you’re constantly annoying them by picking them up and waving them around. I think that would make them unhappy. 

Travel makes me happy. But, once more, that happiness is so dulled, so diluted by Anhedonia and depression that I struggle to enthuse over my passion. Yes, I’ve become passionless about my passion. If I add in the increasing pain and stiffness of fibromyalgia then I also need to ask if my travelling days are numbered. Will I have the stamina to travel ?. There’s so many countries I want to visit, Peru, Namibia, South Africa, Costa Rica, Morocco… that the thought of never reaching them makes me deeply unhappy. 

Truth is that right now, nothing makes me happy. It’s a state I no longer recognise. In fact I actually question if I have ever been happy. Have I ever experienced true happiness ?. Have I let myself go to the extent that I reach a state of euphoria and actually relax into that feeling and accept it’s truthfulness?. 

Perhaps what would make me happy is being able to recognise the reality of my emotions. To be the real me, whoever that is. 

I don’t know any more. 

Happiness. 

What is that ?.