Getting through

It’s hard getting through to people. 

Hard getting them to understand how much I can cope with; how much I can tolerate. 

It’s harder when you’re masking and you don’t want the mask to slip but you find yourself in situations that are extremely uncomfortable and you feel very trapped. 

There have been a few of those recently. 

Even at home I’m masking most of the time. I don’t like upsetting my better half but I do wish I could really talk to her and get her to listen. Unfortunately, if I do that, it upsets her or she just starts talking over me. It’s a no-win situation. 

I find that people don’t want to listen. Perhaps they don’t have time to listen. Busy lives and making time to actually give proper attention to someone else is harder and harder these days. 

But it means I have to mask and bottle things up more frequently and the more I do that then the more anxious I become. 

I don’t want to tell my life story but there are things I want to really talk about, to talk about in depth so that those listening really get me!. I’m finding it harder to cope both mentally and physically but find that expressing how I really feel is now nigh on impossible. 

Yes I know people have problems but if your NT then you probably have friends and family to open up to. 

When you’re Autistic it’s not that easy. 

What to say ?. How to say ?. To whom ?. When ?. Can they be trusted ?. Will they understand ?. Will they think you’re making a mountain out of a molehill especially, as, being Autistic, small things can affect us deeply and we aren’t so able to brush them off as NTs are. 

I just want to be understood. I just want someone to actually hear me out; someone to empathise with me and see the world through my eyes; see how it all the affects me. 

I don’t want sympathy. I’m not attention seeking. I want to make my life easier so others lives are easier. Less stress for me is good for others. 

I have tried but, as I say, it never ends well. 

Why is it so hard getting through ? 

The joys of interaction

Two weeks ago I joined a group. 

We had a common goal which, whilst not important in the grand scheme of things, would keep us occupied. 

Welcome to the world of online gaming and the Clan! 

I’m not very good at games. That’s okay. I’m 51 and use them to chill. I’m not into being the best or breaking records. They’re a wind down after a tough day at work. They aren’t serious. Or, they shouldn’t be. 

I’m also Autistic so I’m not into chatting whilst playing or interacting verbally. 

But I joined the Clan and was immediately told there was no pressure on interaction. Do your own thing, join in if you want to, there’s no pressure. 

So, there I was, playing away. Doing what I do and, in this game, what I did benefitted everyone. Our score, for want of a better word, led to better in game “stuff” so I patiently added to the score as I played the various activities. 

Then I made my mistake. On our online chat I was taking the gentlest of P out of myself. That’s my bad. 

I was told that I should stop it, buck my ideas up, contribute more. 

I said, look, I’ve had two strokes, it’s a game, I’m not taking it seriously, I’m doing my bit. If I want to take the P out if myself I will, that’s my right. I’m not taking the P out of you. 

So then my lack of interaction gets brought up. I’m not a “team player”. I’m not contributing to the clans success. 

So I left. 

I don’t need that. I don’t need some self indignant individual telling me I’m not interacting. I’m talking to him aren’t I ?. Isn’t that interacting ?. By playing and contributing am I not interacting ?. 

I don’t get it really. I’m confused. I’m told I don’t need to interact but then get criticised for not interacting enough. What do they want ?. They know I’m Autistic, I don’t like talking on a mic when I play, that I don’t take it seriously so..

They know, right ?. 

Only they don’t seem to. Again. There’s no tolerance. It’s having to prove yourself or some other macho BS. 

It’s a video game. A video game. It’s not important. 

So, you may be saying, if it’s not important why are you blogging about it ?. 

Well because once again it highlights how confusing it is for Autistic people. There’s a definition of interaction that’s clearly NT and there’s my definition as well. I felt I did interact, I did what was expected of me, in the way they knew I would do it. 

And I do take the P out of myself. It’s who I am. 

Interacting is just another Autistic puzzle. Too much ? Too little ?. I only wish I knew. 

Selling myself

No, not literally. 

It has been considered but I don’t think eBay would approve.

I’m talking about the art, for it is an art, of selling yourself, your abilities and talents. 

I’ll stop there then. 

You see ?. It’s hard to sell yourself when your self esteem is so low that nothing anyone says about you seems, actually, to be about you. You can’t see it and that makes the compliments sound weird, a bit false and that they should have been made to another person. 

A colleague to whom I am exceedingly grateful has taken it upon themself to thrash my CV to within an inch of its life and shed some light in the darkness. She has done sterling work although, I must admit, what she sees in me I do not see in myself. That is not to be critical of her because I always feel it is far easier to write of others than it is of yourself. I can write wonderful references about others but can’t think of a single thing to praise in me. 

I had a meeting yesterday to talk about my CV. I felt myself cringing and shrinking into my seat as I squirmed and twitched at the skills it is alleged I possess. 

Do I have an analytical mind ?. Am I good at problem solving ?. Well it depends on the problem I said. And yes I over analyse things. 

An ordered and logical approach to tasks ?. If the task is to chop a banana I suppose logically that dictates a knife and, err, a chopping motion ?. 

Effective communicator ?. How do you judge effectiveness ?. Is that when people don’t have a glazed expression ?. 

Now I may be these things. May be because I don’t know. I don’t recognise myself in the descriptions. 

I was asked to list my achievements. That doesn’t include exams (though they aren’t anything special) so I squirmed and twitched some more, did a bit of sighing, looked at the ceiling, ummed and aaahed and then looked blank and admitted I couldn’t think of any. The person I was with didn’t help matters as he reeled of his environmental successes throughout South and Central America. There’s a big difference between those and mine which are basically getting up and into work every day!. 

It really is hard to sell yourself on paper. Writing seems to diminish achievement to the status of the inconsequential unless those achievements are, I feel, academic or unique. Saying I’m a good listener or logical seems, at least to me, humdrum and ordinary fare. There’s nothing standing out. 

And it’s not just on paper. You then have to convince people that what’s written about you is true. 

“So Patrick, you say you’re an effective communicator. Can you give us an example of where you used effective communication to overcome a barrier ?”. 

Help. 

“Err, ummm, well…..err, ah, well…oh, ah, well..yes…err….” 

Not so effective after all then ?. 

Perhaps this is my introverted self speaking, the one that can’t blow it’s own trumpet, the basically shy but having to mask massively because I’m Autistic self. The one which can’t see anything good in myself/himself/themselves or whichever you’d prefer. 

I really don’t know. 

I have to sell myself. 

I have to somehow be this person that other people see. 

I only wish I believed even a fraction of it. 

Treading Water..

This week I’ve been treading water. 

Not literally. 

I can’t swim and even treading water or floating is beyond me. 

But in my life I’m treading water. 

I’m not at a crossroads, I find that too limiting. I’m in a vast ocean being buffeted by different waves and pushed and pulled along by different currents. Occasionally a wave will submerge me and push me down beneath into the cold dark. Then I must push myself up towards the light and emerge, gasping for breath once more, into the air. 

I’ve had a few meltdowns. 

Not massive, serious ones but brief encounters with my dark side. Even though they’re brief they remind me that I’m just treading water and that I could, at any time, be engulfed and swallowed whole by an outburst of incandescent rage. 

Mostly they’ve been caused by ineptitude; miscommunication and people’s inability to listen. I’ve found myself teetering on the edge because people don’t listen to simple instructions and that causes me upset especially when that failure to listen directly impacts on me. 

So there’s work and that’s a large wave to contend with. 

Then there are the continual currents about house buying, moving, all the stress that will bring. They push and pull me in different directions because they are so contradictory; stay or go, how big ? Where ? Jobs ? ….

Then there’s me. Me as an individual. Anhedonic me, me with no hobbies, no interests, me who bobs along in the sea, going nowhere. 

This week, in a rare moment of clarity I thought about study. I thought about forcing my brain to do something, I thought about forcing myself to move, to interact. I thought about rekindling a special interest of mine, something I actually enjoyed and know quite a bit about. 

I really thought about it. 

But I don’t have that kind of money. £7500 for a three year course and then £3250 for the final year. That’s way beyond my means. 

My partner says yes I have the money. Okay, yes, I do have access to those funds. But that’s the house fund, I can’t take anything out if it, especially not at those levels. That would just diminish our budget by an unacceptable level. 

No I wouldn’t have to pay it all upfront but I would have to pay for the first year and I don’t have £2000 just lying about the place. 

And what if my brain didn’t want to do it ?. What if I found it beyond me ?. What if the Fibro fog and the Anhedonia simply said “No” ?. I can’t waste that money either. 

My partner asked me what I’d do with the qualification when I had it. She’s right. It’s not something that would get me a better job. It’s not that kind of qualification. 

So. 

Another idea that must be considered and dismissed. 

Oh well. 

I’m treading water this week. It’s cold out here in the ocean. And it’s lonely. I feel the waves increasing, the currents getting stronger. 

I’m treading water. 

Just waiting for a tsunami to wash me away. 

Words fail me..

I’ve given up. 

What’s the point ?. What’s the point in trying to protect people; trying to warn them, when they won’t listen ?. 

I may as well be invisible. 

The same person causing ructions. The same person publishing stuff shaming other individuals and still you follow them. 

After numerous account blocks from Twitter itself and account deactivations, name changes, you still follow. And to offer them support. 

Support ?. Where was the support for me when I was threatened; when the followers were encouraged to gang up on me; when I was called a c**t by the individual for no reason other than we had disagreed ?. 

I’ll tell you where it was. 

Nowhere!. 

When they complain about being trolled you leap to their defence yet seem oblivious to what they’ve done to me and to others. 

I can’t tell you who to follow. It’s freedom of choice but if you persist in blindly supporting someone who has demonstrated, time and again, a vindictive nature towards others, who won’t back down, who humiliates, threatens and swears at those who disagree, then I have no choice but to block you. 

I’m sorry because some of you I really like but I can’t take the risk of being dragged in to yet another scary situation in the Autistic community. 

I find the individual terrifying. Genuinely scary and, worse still, I think they relish the fact. 

So, 

Words fail me. 

I’ve tried. 

You won’t listen. 

So, I’m sorry. 

Goodbye. 

Aspie or not Aspie. That is the question!

Last week a neurotypical did something silly. 

They used the word “Aspie” in a tweet. 

I know, I know, I can hear your gasps of outrage from here. 

Soon enough the language police arrived and the poster was told in no uncertain terms that people in the community didn’t like the term “Aspie” and more than that, it was wrong!

Wrong! 

No, it’s not wrong. 

I follow several who use the word “Aspie” as part of their identity. It’s who I know them to be and they’re 100% entitled to identify with being Aspie if that’s their choice!

It’s not up to the community to police them. 

If you don’t like the word then don’t use it. Just don’t tell me what word I can use to describe myself. It’s not your business. It doesn’t hurt you, doesn’t affect you. By telling me what word I can use you are denying me a basic right. The right to choose. 

Stop policing us!. 

You can call yourself Aspie, Autie, Aspergic, Autistic, Neurodivergent or whatever label you like because you have freedom of choice!. 

I don’t care. 

It’s not my job to police you. The label you choose is the one you feel comfortable with in much the same way as you use a label to tell us your gender or sexuality. If you’re happy then so am I. 

It’s just another disappointment in the community. Another example of petty behaviour by our self appointed spokespersons who think they speak for eveyone. They whine about wanting acceptance, wanting understanding, wanting a voice and then display no acceptance, no understanding and deny a section that wishes to identify as Aspie, their own voice. 

Bunch of hypocrites. 

Sometimes it’s not hard to see why we aren’t taken seriously. 

Perhaps they think it’s divisive. The fact our diagnosis was Aspergers rather than Autistic. Or perhaps they link Aspergers with the terrible high functioning label and believe we use it to demonstrate some superiority ?. I don’t know. All I know is that I identify as “Aspie” because I think it’s a nice sounding term. It’s kinda cute. It’s nothing to do with superiority (as I have nothing to be superior about) 

So stop. Stop policing. Stop dictating what we can identify as. Stop trying to speak for everyone without asking first. Check your facts before you blunder in. 

Aspie or not Aspie ?. 

I like Aspie. 

I’m sticking with it!. 

What happened to me ?

I used to have interests. 

I used to be into stuff. Passionate about stuff. 

Now it all seems to be such an effort. My minds like a sieve. Stuff drips through it, drains through it and retention seems ever harder. And that’s frustrating. 

I have to force myself to remember stuff as it’s not coming naturally. And that’s actually a painful exercise, trying to force yourself to recall facts and figures that seem to be elusive the moment they float into your brain. 

I know I have Fibro Fog. I know it’s going to be hard but, three years later, I’d have hoped for some improvement. I’d have hoped that there were the first budding roots of an interest developing. That the first seeds had been planted. 

But there’s nothing. 

I can’t relax and perhaps that’s an issue. My brains fighting Fibro Fog and I’ve had two strokes. I’m anxious and stressed all the time. I don’t know how to relax so nothing’s coming naturally. It’s all contrived and forced. My brains taking a battering and my worrying about not remembering is just adding to the stress and worry. It’s a vicious circle. 

Works an extra pressure. 

All I want to do when I come home is crash. Go on my iPod. Do Twitter. Watch YouTube videos. I try and read before I go to my fitful, disturbed non restful sleep. But it doesn’t sink in and I skip more than I read because I find it frustrating. 

I’ve never had a vast range of interests. I’ve never had hobbies as such that involve making things or anything practical. But I’m sure I had some. 

But then I question that. I question everything. Have I ever had a genuine (and that’s the important word), genuine interest in anything at all ?. 

Seriously. 

Travel. Sure but that’s not a 24/7 consuming hobby as it’s governed by finances so it’s not a practical thing. Egyptology. Now there’s a thing. So many books, started to teach myself how to readHieroglyphs, gone in a moment. Football. Yeah but I don’t play. I enjoy football but it’s not something I avidly follow. Not now. 

Partially I think it’s because I’m a failure. I’ve never been good at anything. Never done anything that made me think, yeah, I could do this, I enjoy this, I can make this work. So my mind knows that I’m not going to achieve anything so hey, why bother ?. 

Things I might have been good at and I do stress might, are no longer open to me. So now there’s regret at missing out to go into the equation as well. 

I feel very broken. Very useless. 

I want to punch myself, to wake up. I self harm but that doesn’t seem to make me any more aware or any brighter. Perhaps I do it to punish myself for failing again. 

I’ve had personal loss, I’ve had illness but I can’t keep using them as excuses. They are, they’re certainly factors in my state of numbness but I need to wake up. 

Only I can’t. I just can’t. 

I’m tired. Disillusioned. Fed up. Exasperated. 

What the hell happened to me ? 

Feeling at home when I’m not..

It’s a contradiction in terms that I feel most at home when I’m far away from it. 

Home reminds me there’s work. Home reminds me there are chores to be done. Home reminds me that I really want to throw lots of stuff out (and then I realise that 90% of our stuff doesnt belong to me!) and that no matter how I want things organised the other half wants things done her way (that would be the messy, spontaneous, chaotic, whoops where did I put that ?way). 

It was once said to me that I only really come alive when the prospect of travelling arises. 

That’s probably true. 

It’s one of the few times that the decision is left entirely up to me (with a bit of advice which can be ignored) and it really brings out one of the Autistic strengths (or at least one of mine), the joy of organising. 

There’s the planning. Where have we been ?. Where shall we go ?. Budget ?. Likely weather ?. 

And the organising. Cattery. Driving time to airport. Airport hotel. Airport car parking. Seats on aircraft. Money. Visas. 

It wraps me up in a warm bundle of gooey cotton wool which smells of travel and I start to feel at home from the moment I book. 

Of course travel is not for everyone. It brings with it many Autistic sensory issues. Crowds. Noise. Chaos. Unpredictability. Social interaction. 

So I get into “The Zone”. 

Let’s call it “The Travel Bubble”. 

Comfort is absolutely vital to me when I’m travelling. I need to be both physically and mentally comfortable. 

So, through careful preparation and a lot of reading (Guide books, travel blogs, travel websites) I first satisfy myself that there are things I want to see. That there’s going to be enough to occupy me. I want some free time to catch my breath but no so much that I’m lost without a routine. 

I want decent accommodation. I don’t need five star luxury as that tends to wash over me but I want a spacious room and the prospect of food I will recognise. I have quite a limited diet and although I adore India I am not, actually, tolerant of curry so the availability of comfort foods such as toast or omelettes is important. I’ve yet to find a place that couldn’t rustle up either and there’s usually plenty of fruit to nibble on. 

I don’t like being in one place. I’ve done two beach holidays. Neither were successful. I can tolerate a beach and admire the beauty of a beach but sitting on one for days on end I find utterly exhausting. 

So I need to move around. If I’m going for 15 nights then it’s not unusual for me to stay in 10-11 different hotels. Wow, that’s a lot of changes I hear you say. You’re right, it is, but I’m in the bubble. Embrace the bubble. If you want to see a lot of different things then you need to move about and with a timetable to hand that I understand and can follow, I can get myself prepared.

I don’t pack too heavily. I wear what I’m comfortable wearing. Usually bright stuff. But then I wear that at home as well. I like to keep cool. T-shirts, shorts, comfy closed toe sandals (I’m awful for stubbing my toes), trousers to fly in and a spare pair in case of emergency. And I take old stuff I can leave in hotel rooms as gifts or because I have newer stuff at home. I’ve often returned with a lighter case. 

I like to diarise my travels. Where we stayed, what we saw, what we ate, impressions of the journeys between hotels, impressions of our fellow travellers. I like to extend the bubble by writing up my journal when I come back. I like to list things, another Autistic trait. 

Travel brings delays. It brings inconvenience. But then I have those here. Roadworks are to blame!. 

I’m at home when I’m comfortable and I’m most comfortable when I’m not at home. When being Autistic means that you’re the one who knows what’s going on, when you’re the one who knows what you’re looking at, when you’re the one with the full medical kit for all emergencies, when you’re the one in the luminous t-shirt the rest of the group can see from a mile away (“Can you see the guide ?. No, but I can see that bloke in the orange t-shirt!”) and even when you’re the one that your fellow travellers are convinced works for the tour company because “You’re the only person who really seems to know where we are and what we are doing!”. 

They say that home is where the heart is. 

My hearts in the travel bubble. 

Please don’t burst it. 

The Autistic family expands…

My three year old grandson has been diagnosed as being Autistic. 

And that’s great. 

He’s a lovely little boy who likes nothing better than walking along hedges taking in the patterns of the leaves. He likes to walk alongside fences because they guide him and give him purpose. He likes to read the Highway Code because he likes the different shapes of the road signs. He gets right up to the Tv and takes in the images on the screen but in a way most of us don’t. He sees behind what we see, he sees the pixels dancing and they soothe and delight him. 

He’s a really cool little lad. His speech isn’t great, he’s always had an issue there and most of what he does say in sentences is just repetition of something that’s been said to him a thousand times. But he’s getting there. 

He’s the middle child of three. I’d suspect that his older brother might be somewhere in the spectrum, possibly Aspergers but I’m not an expert on anyone else’s Autism. 

He’s had a tough life with a very prolonged stay in hospital being pumped full of gallons of drugs after his knee swelled up out of the blue and we seemed to live through several months of him being in and out with fluid being drained on a weekly basis. No wonder he has, like me, a needle phobia!. 

He’s fortunate that his parents are super people. His dad is a driving instructor (all three children are car mad) and his mum (my partners daughter) was a nursery nurse so her knowledge of Autistic children is based on solid practical experience. 

I think we’d known for a while that he was possibly on the spectrum. You get this sense of it and I had mentioned it on several occasions. It takes one to know one, perhaps ?. 

So let’s welcome him to our community. 

He’s three years old, he’s Autistic and he has a very bright future ahead of him. 

Just watch him shine!.