Does Autism matter ?

If you read the figures, or more to the point, believe them, then as many as 1 in 45 of us might be Autistic.

If you believe the figures.

Whilst I think that sample sizes have led to a mass of conjecture and broad guess work when it comes to identifying Autistic people I think it’s safe to acknowledge that there are a sufficient number of us to take notice of.

And there are clearly a large number of people, especially women, trapped in systems where a formal diagnosis is either a long way off or a forlorn hope.

So there are more of us out there.

I am Autistic and, honestly, wouldn’t have it any other way. I am who I am and I don’t regret that, genetically, I am Autistic. Nor, do I suspect, would many others.

So Autism, on a personal level, matters to the individual.

But look at it on a wider scale and we see evidence that Autistic people have played a key role in advances in science and mathematics and produced wonderful art and music. So it matters and has mattered to humanity that Autism exists.

We live in a predominantly neurotypical world.

No matter how many Autistic people there are, the odds, if I can put it that way, will always favour neurotypicals over us. We will always be outnumbered and probably, even with best guesstimates, by a considerable margin.

But we are a significant group.

And that’s something that shouldn’t be overlooked.

I’ve heard and perhaps you’ve heard, NT people commenting on our existence, asking us why we make such a fuss. So why do we ?

Personally speaking it’s not about ego. I’m not better than anyone else. I’m just me and I’m quite happy with that but my life, and others would be so much easier if we had a few adjustments in our lives. Adjustments that we require the predominantly NT universe to make.

We aren’t talking huge expense. We aren’t talking about anything that would negatively affect NTs. We are talking about simple things that would help us which, in turn, would help you.

Things like, being able to contact by text or email rather than the phone; quiet rooms for lunch; less open plan offices; less harsh lighting; clearer directions and signage; greater understanding of what we can bring to an employer without the ridiculous expectation that we are all savants; and, in general, asking us what we need rather than assuming or expecting. We are human beings and you can talk to us. Just don’t expect too much eye contact.

We matter because we give so much to the world. Sometimes it’s not earth shattering or world changing but something that gives pleasure because it’s been designed by an Autistic person whose unique brain allows him (or her) to see beyond the norm and produce something nobody else would think off. And I’m looking at a certain, previously pink haired but now a mixture of blues and purples, garden designer, when I say that.

Autism matters because, beneath the Autism, we are human beings and generally, a nice group. We aren’t aggressive or rude, are more introvert that extrovert, think a lot, read a lot and have ideas that can and have changed the world.

Autism matters because we see things differently and difference should be celebrated, not tolerated begrudgingly or ignored.

Autism matters because we matter!

If we sometimes come across as asking for too much it’s not because we are in the mood to fight, we are just looking for our place in a society that’s not really ours and one that we struggle to fit in to. It’s not a personal thing if sometimes we come across as demanding or frustrated. We would just like you to listen to us.

We do matter.

Please show us that you think we matter too.

Advertisements

Music through my life.

Age 8 ? – My sister, who was 14, was an avid listener to the Top 40 on the radio. Through her I was introduced to a wide variety of artistes which, when I think of them today, evoke a whiff of nostalgia. I recall the likes of Roxy Music, Kate Bush in her “Wuthering Heights” prime, Boney M and, before child abuse and paedophilic behaviour was exposed, Gary Glitter and his Glitter Band (who had some catchy songs in their own right).

Age 11 – The Shadows. I have no idea how I came to get “into” The Shadows but my mother was a huge Cliff Richard fan so it may have been that which first introduced me to them. I was a fan for many years and now and again I dig out their “20 Golden Greats” to recapture days of yore.

Age 16 plus – Heavy Metal. It’s strange that a genre that has become my favourite type of music (and it’s a very large and diverse genre) was discovered by accident. Nobody introduced me to it and I think, though the passage of time blurs memories, that it was having a radio in my bedroom at home that started it all.

I recall flicking through the channels and coming across Tommy Vances ” Friday Rock Show” which aired after my bedtime (I was living with my parents who had strict views on such things) so I listened to it under my bedcovers.

The music was unlike any I had heard before. My father had a particular loathing of “loud” music and anything involving guitars so music that tested those boundaries was quickly switched off.

The music was raucous and loud, it was fast, aggressive and heavy yet, beneath the raging torrent there was enormous skill and ear catching melody and I recall scribbling notes of bands and songs I enjoyed so I could look out for them in HMV.

Age 20 – First concert. Michael Schenker at the Bristol Colston Hall.

October 1986. A cold and dreary evening outside but a loud (I didn’t know concerts were that loud) and amazing spectacle inside in the company of the blond haired, leather jacketed, trademark black and white Gibson Flying V playing German sensation with his panache for melody.

Age 29 – Perhaps it was maturity or perhaps it was the fact I was signed off work for 6 months through ill health that started me in my next musical adventure.

I was living in Bournemouth at the time and one day, casually flicking through the CDs at HMV, I came across a very cheap recording of Beethovens “Emperor” Piano Concerto. I wasn’t into classical music by any means but I did recall this piece of music from a childhood vinyl owned by my parents and so I purchased it and took it home.

I was instantly transported by the richness of the music. The lush melodies, the huge sound and the consummate skill of the soloist. I suppose I fell in love with the piano there and then and over the next 6 months I amassed quite the collection of piano concertos.

Of course piano concertos are but a small part of the genre so I expanded my audio repertoire. Violin concertos, instrumental music, great symphonic works, Gregorian chant etc all became part of my collection.

And now – Hang on you’re thinking. We’ve just jumped over 20 years and yes, you’re right. I’m now 51 and, in general I’d say my tastes are broadly metal and classical music. They aren’t quite the strange bedfellows you might think as many heavy musicians derive inspiration from the great classical masters.

I do listen to other music but, in general, I’ve found it totally banal and contrived. It’s all so artificial and real musical skill seems to have been abandoned in favour of computer assisted wizardry and repetitive, meaningless lyrics.

I’ve a particular loathing of Rap which sets itself up as being cool and clever yet just comes across as misogynistic speed talking (to me) and hip hop, R’n’B and whatever name is invented next sounds just like the same person to my ears. Modern “pop” music seems to have lost its way with so few distinct artists. But if you like it then that’s entirely your choice. Music should be a deeply personal choice.

But the music I loved has changed.

I came through an era of heavy metal that will not be repeated. New bands, extraordinary musicianship, a huge spectrum of new music. That’s gone now. There aren’t the great radio rock shows, there’s been an acute loss of melody in favour of speed and screaming, guitar solos aren’t as popular as they once were and artists I loved have died out or retired.

Even classical music has changed. Gone are the wonderful compositions of old with their ringing melodies and glorious tunes. They’ve been replaced by harsher sounds, atonality and they no longer sound welcoming or tuneful. Music moves with its times they say and perhaps it truly does reflect a less welcoming society.

I still listen to music and occasionally YouTube will throw me a gem through its “if you liked that then listen to this” suggestions. Where else would I have caught Breaking Benjamin’s “Ashes of Eden” or Skillets “Invincible” ?.

But Music now is tinged with sadness. As I grow older the soundtrack of my youth is now all but gone. Artists die, music moves on, tastes change. My CD collection barely grows and even they, once cutting edge, have been long surpassed by digital downloads. There’s still something great about a CD though, the lyric book, the jewel case, they still excite me.

As artists move on I am left with memories. Memories of great gigs in crowded halls. Of standing out in the freezing fog of a late December in Newport waiting for the doors to open. Of singers falling off stages, bands being so loud the music was lost in a sea of distortion and you went so deaf it took you 48 hours to recover.

Those were the days.

Music will never die. It is timeless although our tastes change. It is enduring although what we deem to be music may well change as we evolve.

But there will always be a soundtrack to our lives.

So now, if you will excuse me, I’m off to listen to some ABBA, Mozart, Rush, Hildegard of Bingen and Jean Michel Jarre…not necessarily in that order..

Rock on!

I’d never go on a cruise but…

It’s quite surprising, when I think about my travels, how much time, or how many times, I’ve found myself on the water.

I can’t swim. Whilst a 12 metre school certificate from about 1976 may hint otherwise I can assure the reader that was a simple error of judgement on my part in that yes, I actually managed some coordination to reach the other side of the swimming pool. It was certainly never repeated again.

So I’m not a fan of water.

But I am attracted to it. Sometimes.

Egypt is famous for its almost obligatory Nile cruise and indeed, what can be finer than basking in the sun upon your return from some excellent sightseeing, drifting along the magnificent river; or watching the sun set over the ancient land.

The sky seems perpetually blue and, on your floating hotel, your needs are met by helpful staff. Cruise boats are also, comparatively speaking, of a manageable size so you never feel crowded or hassled.

I did a short river cruise in Burma. The boat was much smaller and far less grand and the water much closer. In fact I could lean over the side and run my fingers through the wash. It was a memorable trip when one of my companions fell off the gangway whilst going ashore and received sodden trousers for his troubles. Such japes!

Cambodia saw me on another boat trip down the Sangker river. An interesting, if painful experience due to the fact that I have no bottom so sat upon a pile of life jackets for comfort. I’m quite sure that’s not their intended use but needs must..

That same trip saw me crossing into Vietnam by boat, travelling the mighty Mekong. I recall Chris, a fellow traveller, listening to Bruce Springsteen’s “The River” on his iPod as we wended our way down and how apt his choice of music was.

That’s the boat I was on there.

And in India, whilst I’ve yet to sail the Ganges, the Hooghly or the Brahmaputra, I’ve enjoyed the waters of Lake Pichola in Udaipur on a sunset cruise.

I really couldn’t do a cruise.

The prospect of a week or more on a huge boat, crammed with thousands of people just fills me with dread. The enforced jollity and the like brings me out in the shivers. I have a friend who cruises regularly but they are far more sociable and extrovert so, perhaps, a cruise with it’s enforced socialisation, it’s ideal for them.

But not me.

Yet there is that appeal, in certain circumstances, to interact with water, to feel its motion beneath you and hear the gentle slosh and slap as it washes against your vessel.

I can’t swim. I don’t see the appeal of cruising but..

Just sometimes.

Putting plans into action

As I have no idea of my partners real feelings or wishes when it comes to a potential move I have, today, done the following –

1. Checked the Civil Service jobs page for any opportunities in the North East. Annoyingly, since I left the service they’ve changed the job titles to make them more fancy and now, it would appear, even something so humble as an admin officer is dressed up to be a “Specialist analyst in data collection and distribution” or some other gobbledegook!. Just remember that someone, somewhere, is being paid to come up with stupid names for ordinary roles!

2. Made a list of our expenses so I can work out how much we need to live on month to month. I have distributed large costs like car services and repairs throughout the year to give a balanced view.

The short answer is “wow, really that much ?”.

At least it gives an idea of how long any spare money we have would last if employment wasn’t forthcoming. So, depending upon price of house and other costs involved, we could survive for between 3 – 4 years. It could be worse I suppose.

3. Started a list of potential employments. It’s a very short list. It’s really hard because you are torn between move and job hunt in area or remotely apply and then move to near that employment. It’s no good buying in Sunderland if you work in Durham. I don’t do buses and trains are okay but they cost a lot and, given my fibromyalgia and autism, long commutes are difficult and stressful.

My partner (yeah, her again!) says I would be great working in mental health supporting individuals who are autistic. Not a field I’ve ever considered but, who knows…

4. Emailed a complaint to myself at work. Still in two minds whether to send it as the fallout might be unpleasant but have to weigh that up against suffering in silence. I’ll ponder further on this.

So that’s it for three hours on a Sunday morning.

Not bad for someone who is fed up and worn out…

Where there’s a will there’s a way..or so they say.

The Dark Place

I’m really down.

Really struggling.

The holiday period used up so much energy that even with three weeks away from work I don’t feel rested and going back to work just set me back again.

The moment I went in any good thoughts evaporated in an instant.

Back to the grind, the noise, the clutter, the office politics, the rudeness of people I am trying to help and the vicious emails to me which my boss responds to in a lukewarm way, ignoring how I feel but desperate not to upset the sender.

Such isolation. Such loneliness. But that’s how I feel.

On my own.

We came back and talked about our potential move north. Work wouldn’t help with employment. I knew it was a long shot but the lack of ambition is obvious. “We don’t want to lose you” they say yet, on the other hand, they don’t want to help me, encourage me or support me. People have expressed disappointment at the prospect of my move. Is that kind ?. What are their motives ?. Am I popular because of who I am or popular because I know stuff, do stuff and do more than my fair share ?. The “go to” guy because I’ll get it done. Are they scared of losing me because filling the gap will be so hard ?.

I don’t know. I’m not good at reading people. I never know who is genuine and who isn’t.

Moving north is a logistical nightmare. And I get no help there either.

My partner changes her mind daily and I can’t plan with her. I don’t know what she really wants and without some sort of direction I’m left floundering in the dark, the Autistic horrors of not being able to plan and zero certainty raising their ugly head by the hour.

I feel so alone.

And I’m trapped.

Can’t move on because..well, I don’t know where to move on to. It’s like Christmas never happened and we are stuck in the loop of indecision yet again. Can’t move yet can’t stay and loathe job but don’t know where to get one and need a holiday but can’t take money out of the budget!.

It’s a living hell.

Still, on a positive note (sarcasm) I’ve had a letter from the mental health team discharging me (again) with no resolution and no assistance. My thoughts about suicide and how I would do it are of no interest to them nor is my self harm which they describe as scratching..although the deep scars from cutting are, again, just ignored. Hey, I’m an adult who is autistic, I’ve coped before, I’ll cope now…they think..or, at the least, they just don’t care. Out of sight, out of mind.

It’s not resources. Not all the time. It’s not having a clue what to do with you. It’s not being able to listen and support, just basic stuff. Even when they make fancy promises they don’t keep them. I don’t want this or that, I want somebody to talk to, somebody who can give me an insight into stuff, who can be a sounding board. I don’t want a cure or to be over analysed.

Am I asking too much ?.

Seems so.

So I’ve gone back to the dark place. It’s the only place I really know. And I hate it. I don’t want to be here but what’s the alternative ?.

I’m down! I’m struggling..

And I don’t know why I bother..

Does my blog matter ?

Interesting point this as it’s a two point answer…or a two part question..or two questions..

I was looking at my viewing stats today and realised, depressingly, that nobody is reading my blogs.

Not that I’m forcing anyone to read it but, just not occasionally, it would be nice to think that I wrote something that captured the imagination or was interesting or useful and I had some views.

I’m a little envious of those who get regular sizeable views. I know there are some very talented bloggers out there with their finger on the pulse and who use the terminology concerning the subjects their readers are clearly interested in but I guess…or know..that I’m not in that category.

That’s a very different ball game..on a different playing field…

I try not to blog about Autism in great scientific depth. I leave that to the experts who know the up to date research and terminology and who can throw out the correct phraseology which, I must admit, goes way over my head. There are too many ‘isms for my liking.

I can blog about my experience of being Autistic but I’m not sure that’s found to be interesting by most people. Especially when I’m not couching it in the deep thinking way that many of my Autistic associates can and do.

And what I have found is that my interests, to other people, just aren’t that interesting.

I know popular blogs exist that review books, music and films but if they are already being written then there’s little point in my own perspective. And, in all fairness, having Anhedonia means that most of that kind of stuff just doesn’t interest me and hasn’t for the last three years.

I can only blog so much about snakes. For one they really don’t interest many and two, it’s not like I have one here that I can blog about. The Daily diary of Paula Python will have to wait.

I’ve done quite a few travel blogs.

I’ve tried to make them interesting and amusing but, again, they don’t appeal to many and I probably don’t have a style that’s distinctive enough to stand out from the crowd. I also don’t travel enough so can’t do daily real time updates that people can follow. Of course if someone wants to pay me to travel and blog please let me know…

So the question is, why bother ?.

Why continue to blog ?. Partly because it’s a way of expressing myself and getting thoughts down on paper..or virtual paper..and partially because of ego. I’d like to be recognised as a good blogger worth reading…

I suppose it’s very much that actually. With no identifiable talents it would be nice if what I wrote had an audience that wanted to read what I wrote and wanted more. It would be a boost to an admittedly broken ego and perhaps stimulate some interest in something.

But it’s not going to happen. I’m afraid that being realistic must come first.

So, the answer to my original final question is, I suppose “Probably not”…and that brings up a whole new question…”Should I carry on ?” ..

I think I’ll just have to wait and see.

So let’s make some plans..

After listing my hopes for 2018 it’s time to get some sort of plan in place..

Though, it must be said, any plans I make tend to be sabotaged, inadvertently, by my NT partner!.

Still, one must try and try again…

So, here’s what I need to do..

1. Have a sort out. A proper sort out. The kind of sort out that means I can actually find things when I want to instead of trawling through boxes of clutter. The kind of sort out that results in things going to charity or to the skip. Not the sort that simply moves stuff from A to B. I believe that to be my partners favourite type of sort out!

2. Be ruthless. If we are moving then we need to get rid of stuff. I don’t like keeping stuff in case it’s needed..because it rarely is and it just clutters up the new place (when that day arrives). I’ve already sorted out a load of charity stuff and I come across clothes all the time that are past their usefulness or too small or give me a poor sensory experience, so they can join the charity pile quite happily.

3. Be more active. Yeah that’s a tough one when you have fibromyalgia and I’m writing this three days after coming home from the North East, still feeling worn out and aching all over. But I’ve got to force myself to do it.

4. Sort work out. I’m waiting on a decision that I have asked them to make. If they say yes then I can make more definite plans. If they say no then I need to formulate a new approach to job hunting and establish a survival strategy to see me through to the end.

5. Mask less. Yes, I think the days of masking, whilst not coming to an end, must be reduced. For the sake of my sanity, anxiety and depression, I need to embrace my Autism. It’s time to put me first and play by my rules or, at the very least, have me time. It’s time to organise as I want to organise. It’s time to take control.

So that’s it..or those are they..or them…or something..

Five steps to, hopefully, get things on track…

Let’s see how far I get with them.