What to say?

Sometimes I lose the desire to write or blog or whatever I do here.

It goes. I have things in my head and sometimes they don’t come out.

I might be thinking autism or politics or football or transport, but it doesn’t happen.

I try and stop myself having grand and unfeasible ideas. Ground myself.

I’m doing day to day and getting by. Seeing the kids, keeping up. Mood comes and goes. I watch TV, I try and listen to music.

I can’t push myself over getting ‘help’ or treatment, it’s not really going to happen unless I have a breakdown. I’m trying my best not to. See paragraph above this one and repeat.

So. What to say?

Do I want to break the cycle and think that all I’m doing is existing?

Do I want to think there’s more to life?

I’ve wondered about dating and also wondered about not.

The idea of accepting that’s it and I’m done is something that’s been kicking around my head.

I know I’m not brilliant and know I’m not maybe where I want to be, so understanding that what I may want to do and what I may be able to cope with.

I dunno. It’s effort and trying and believing myself well enough to project outwards and thinking and thinking.

A step forward is at least is knowing or thinking that it’s something to think about, but a step at a time. As ever.

But? What do I have to do?

Nothing is maybe the answer. Maybe I do nothing. Maybe I just think about it all a bit more. Leave it be.

Hope, Cross fingers, continue muddling along.

Onward. Ever onward.

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A shadow of the man you should be. (Autism)

I played some Big County on my phone and headphones the other day. It got around to ‘Just a Shadow’ and the lyric bit me.

It’s just a shadow of the man you should be.

Ouch.

That hurt.

I can duck and dive day in and day out, but I’m not really the man i was or the man I should be.

The lyric crystallised my thoughts.

I’ve deluded myself that things are better than what they are and I’ve hid from the really uncomfortable truths.

I’m over three years separated and over four from my autistic diagnosis. I’ve lost everyone and I’m pretty much alone.

My attempts to get help have failed and trying for PIP took so much out of me. My attempts to get other help last year proved fruitless and I’m just alone, scared and trying not to fail.

I’m in no fit state for anyone else and although I might think that I need company, I can’t see anything ever happening.

I don’t want to do things myself, where before I could. There’s no one to fall back upon and I’m not looking for pity, sympathy or anything else.

I need to figure out a great deal in order that I can be independent again and feel a bit more satisfied about life.

I see things that are on at the cinema and I dread the thought about going myself. I don’t think I can go out drinking myself either.

It’s a lot of negative things to attempt to process and make sense about.

Confidence and ability take a great deal of work to regain and I feel the loss of those. Functioning and managing day to day is one thing, these are another thing altogether.

For now, I have more humbleness and more accepting to do.

I think I must accept there’s little chance of any new relationship whether emotional or physical. I’m not going to be capable enough to do that.

I must accept that I need to make progress on my loneliness and work at things to make it easier and to try and pick up some threads.

I think I’ve had my chance on many things and that I can try to build a little bit more on my own and take some small steps forward.

I can’t fix all the things I’d like to and I don’t have the skills socially to repair some things in my life.

For now, I can work on things like my weight, anxiety and emotional and mental health. Those are my priorities to ensure that I continue to function and do what I need to do.

Anything else is too far to jump. There’s accepting how I look and how old I am and knowing there are limits to my abilities to deal with people or to even figure out everything else.

It’s a step back to a step forward.

Or it’s looking properly at issues and taking stock of where I was and where I am. Being honest and taking an issue at a time.

I will not wake tomorrow and change. I will not shake it off or find things to be easier one day.

Much to process and figure. Not easy either.

A year after PIP refusal.

Getting past April as autism awareness month is always good, but my mind has turned to it being a year since I was refused PIP.

I did the applications, asked for the Statutory Reconsideration and took it as far as the appeal panel.

I’m aware of Scotland’s new social security system coming in and I just couldn’t bring myself to re-apply. Even if all they say is true.

I tried and had a Doctor and Nurse lie to ensure I didn’t get anything. It stripped me of dignity and confidence and I couldn’t go through it all again.

My attempts to get help petered out after the Health and Social Care partnership referred me back to GP.

It’s a new GP after my old one excluded me and at an appointment I was told they prefer to phone than do appointments, so I’ve given up on that, barring getting my regular prescription.

I’m no better than I was. Not much I can do other than hope I don’t have a meltdown.

I think I’m self medicating between nicotine tablets and CBD oil. I’m not drinking alcohol at least.

I’m not sure on there being enjoyable days, maybe when with the kids, certainly not when alone or in the day to day of the work week.

For work, I’ve had to remove all my accommodations.

An email reminder on clear desk policy has sent me backwards on use of cutting pads to stop reflections and after a meltdown, I was told my earphones are antisocial to my colleagues, so I’ve stopped using them.

(Pointless saying I was triggered by the email system not working and a demand made for me to access email by someone not having issues with the email.)

Same guy that made comment on the headphones, later sent an email saying my employer is ‘disability confident’ – er..

I’m hating the trains and travel to and from work, as it usually means standing.

I had a dialogue with Scotrail’s inclusion team and it seems I can use the priority seats, but it’s not an issue as they’re usually occupied.

Everything’s pretty much still a mess and difficult.

Financially, I’m trying but it’s difficult every month.

I haven’t yet had that holiday I was deluding myself about.

I’m still alone and haven’t seen anyone new. I don’t think I can in the state that I’m in and I really am still hurt from past events. I don’t think I’m a prospect anyone would want.

It’s a boring and lonely existence watching TV and reading twitter but it’s about all I have.

So.. onward, ever onward.

There is no help.

17th March 2018.

My attempts to get any sort of help or support have failed. The letter pictured says..

Renfrewshire Health and Social Care Partnership.

Date 9th March

Dictated 23rd February

Dear Mr Gibson

Thank you for attending your assessment appointment at the Charleston Centre on 8th February 2018.

Following discussion with the multidisciplinary team we will be discharging you back to the care of your GP as there appears to be no role for CHMT at this point.

I have written to your GP informing them of this decision.

Yours

X

Community Psychiatric Nurse

Community Mental Health Team.

So, if I want help I’ll probably have to go and commit a crime. Seems to be the only way.

Alcoholics, drug users and all other forms of low life scum and vermin are treated to a higher standard than someone with a lifelong condition.

I’m beyond disgusted at this and I’m going to end up lower and more isolated as a result.

The Scottish NHS isn’t worth a fuck as far as I’m concerned. They’d rather see me dead.

Weighing Reality and Hope (Aspergers)

At times, it gets too much. It’s lonely and boring and dull. It’s me and the TV after work. I can vary what I eat and what I watch, but mainly it’s me on the sofa and the TV. I have early bedtimes. I wind down and I sleep. I get up, follow my routine and then go to work.

Maybe that’s all I can handle. I don’t particularly want to go out, I don’t particularly want to see anyone. My weekends have the kids. I like that and I’m focused on them. Then it’s back to the week and me, myself and I.

Maybe I don’t need excitement or change or different. Just float along, get older, have the routine. Stick with it.

I’m trying to avoid accepting a decision. Accepting that ‘it is what it is’

Me and the TV. Push away the other thoughts. Accept it.

I’m 45. Not young, Not old. But, what does that mean? What should I expect? Another 25 Years? Longer? – is there something to strive for or to believe in or to think that my life can change significantly. I could push it and look for more and think ‘I want to be happy!’ – but what if maybe I am already?

The blog, the twitter, reading articles online. Building a Lego kit now and again. The odd Instagram photo. What’s coming soon on Netflix. The tips from others on what’s good. Day to day at work. A message from my daughter. A text message here and there.

Maybe, I read some more philosophy. Maybe, I look at the graphic novels publishing list. Maybe, I see the rail forum or the train and bus magazines. Think about the paintwork, think about the bathroom. Read the bills again, look at the online banking.

I’ve had a life. I’ve tried in the – what I know now is a – neurotypical world, I’ve pushed myself at 100%, their 120%. I’ve had ‘friends’, I’ve tried and I’ve been there and done that. I like my once a month meal somewhere different, I like eating out with my daughter and going to the bookshop. I like my random chats with my youngest and the mad friendly welcome from the dog.

Maybe, I accept that I’m fortunate, that I’ve got where I am and it’s good to get there and yeah, this can be better or that could improve, but I basically stop myself from pushing and railing at it all. Be content. Try to be wise and good and kind. I don’t need someone else to do that and there’s validation enough and it’s okay to be separated and alone.

I think I’ve always had the ‘romantic dream’ of miss right ‘rescuing me’, probably delusional, based on tv and film and that thought that ‘one day it’ll be me’. Maybe I met her and never knew it, maybe she walked past me, maybe she never existed. It’s a pleasant day dream or illusion as much as being a god fearing good man or to always be a gentleman.

I’ve read about involuntary celibacy and I’ve sort of questioned it. Firstly, I choose to do what I do. I might meet a woman by going drinking on my own, I might not. Social skills set deficit after all.

Obviously, if you go out on a Friday or a Saturday night drinking in places the opposite sex are, then it’s more likely. I suppose I choose not to.

That’s my voluntary choice and it reduces the likelihood of any chance encounter.

I don’t do evening classes or other activities, I don’t sit in a coffee shop for hours on end, I don’t go hillwalking or running or any of that sort of thing, again my choice and my circumstances.

Obviously the more human contact, the greater the possibility or chance. It’s odds, I suppose, you gamble a bit, you may be lucky, you may not. If you don’t play the game at all, then you’re unlikely to win.

So, therefore, I can’t bemoan being ‘involuntary celibate’. I can say I don’t go out much and I can say that I lack the practice in interaction with anyone new and that yes, I’d find it awkward and strange and a bit scary too.

Now, the question, is balance. Accept what you are and what you have or stretch out life seeking something or someone that maybe isn’t there.

There might be an equivalent woman around my age and with my interests, that’s got her own commitments, life and work and maybe feels about the tv and sofa thing as I do. She might not even be on this island. A needle in a haystack, a pin in a box of other pins. What might be out there is out there.

It’s a ‘might’ or a ‘maybe’ or a ‘what if’.

I’ve a tendency to say ‘travel in hope’ to others when they’re disheartened. I suppose I can throw in ‘it’s not the destination, it’s the journey’ and the other tidbits that one picks up along the way. I know a lot about not giving up and keeping going.

But, the question I have for myself is ‘Can you accept being alone and make the best of it?’

Accepting the life, the day to day routine and focus on the kids and be content. I’ve a way to go yet in resolving my inner conflicts, but I could make a simpler life for myself by being easier on myself by accepting what I am and letting go of fantasy and delusion and leaving dreams alone. Reality can be enough at times and getting through a day or a week is tiring enough.

I can read and ponder and keep going, but making a decision or classing myself as something? Perhaps that can wait.

Triggered (Aspergers)

I had a panic attack yesterday. I had used an in-store toilet in a supermarket and kids had shouted in and then turned the lights off.

I was trapped in the dark, I shouted repeatedly and after a few minutes the lights went back on.

Maybe it was teens pranking a friend, but it triggered a panic attack for me.

My breathing went, my head got sore. I was confused and frightened.

I could only make it to the customer service desk to say what happened and I then had to go outside and go sit at the bus stop.

I couldn’t face going to look for things. I had in my head going back into town by bus and then getting what I needed at the train station in Glasgow (another 40 minute trip).

A couple of minutes. A ‘harmless prank’. I was all over the place.

I wanted to scream, I was physically shaking. I was out of my usual.

I had walked earlier to the hospital to see a relative, but I’d mistimed it and ended up sitting in the corridor to wait on the food trays coming out. I handled that okay.

I was patient and quiet and tried distracting myself. I had looked at bus times on my way in thinking I could go and get things I needed later. My head was stressed with the timings but I tried to manage it by thinking that it was okay to wait and I didn’t want to disturb anyone.

I then walked to the big store. I needed things. There wasn’t a direct bus, I checked and it was dry, I knew I could get back by bus, so not a massive issue. Fresh air and a wander about.

Then I realised I needed the toilet, I suffered the inevitable hand dryer noise and then doors banging closed and open and again. A shout of a name and the lights going out.

I panicked and shouted ‘turn the lights on’, it was minutes in the dark. Pitch pitch black. I couldn’t see. I was stuck. I froze and didn’t know what I was doing.

I tried to say what happened when I got out using my ASD awareness card.

It took a long wait outside in the fresh air and the prospect of a long pointless trip by bus and train to make me go back in.

The lights. The noise. So many people. Having to think where things were and going an item at a time. Head full and sore. Needing earplugs and to cancel out the noise.

Getting further. Stopping. Starting.

Feeling stupid and lethargic. Glacial pace of thinking. Anger about the kids and the thought of being derailed from what I had planned to do.

Conscious of my breathing and shaking, trying to steer away and around people.

Item, think, Item, think.

Made it around. Sat down after paying to fix my bag and calm myself.

Days aren’t always straightforward and you can’t foresee triggers or stresses or panic situations.

I can write it after the event, the racing feel in chest, the tightness in head and the whirl of thoughts make ‘at the time’, so difficult.

World Autism Acceptance Week.

World Autism Acceptance Week is 26 March to 2 April 2018.

World Autism Acceptance Day is April 2nd. It was initially a United Nations initiative.

In the UK, materials are available from the National Autism Society.

NAS WAAW materials

1. What is Autism?

Swiss Psychiatrist Eugen Bleuler used the term, ‘Autismus’ in his work in the early part of the 20th Century. The meaning is essentially as ‘otherness’.

Autism was observed properly in children in the 1930’s and 1940’s by Hans Asperger and Leo Kanner in separate studies. They had a diagnostician, Georg Frankel, in common, as he left Europe for America to avoid the Nazis. He may have influenced Kanner’s work.

It is also thought that research in the 1920’s in the Soviet Union came to similar conclusions.

The English language medical model of ‘infantile autism’ followed on from Kanner’s research.

These theories were challenged in the 1970’s and 1980’s by Lorna Wing in her research. Uta Frith fully translated Hans Aspergers research papers around 1990.

The diagnostic basis were formalised in the late 1990’s and is now seen as a spectrum condition with diagnosis formalised as Autism Spectrum Disorder. (ASD).

2. Why Awareness?

It’s a prevalent condition in about 1% of the population. That could be around 700,000 people in the UK.

As a Neurodevelopmental Disorder condition, not a disease, it’s not something that can be cured as it’s a essentially a human difference like eye colour or skin tone.

It is not related to environmental factors as hypothesised by discredited researcher Andrew Wakefield who caused a panic over effects of childhood vaccines.

Symptoms vary and there are different degrees of learning disabilities or co-morbid conditions that can be associated with the principal ASD diagnosis.

Awareness of prevalence and the difficulties with social communication, social understanding and social development can help Autistic people to be accepted.

3. Why not Acceptance?

Autistic advocates would prefer Acceptance and for the concept of neurodiversity to become as known and accepted as gender equality or sexual preference equality have been in recent years.

It’s a neurological difference and if other human differences can be positively promoted in society, why not seeing the world differently?

It’s the next step in Equality thinking for many.

4. Is ‘Autistic’ or ‘Person with Autism’ better?

For me and many others it’s ‘Autistic’, whilst I understand person centred language, I don’t carry my Autism with me.

For me, Autistic Person is fine. Person with Autism isn’t.

Research suggests split views on terminology.

5. Should I ‘Go blue for Autism’?

No.

You may see Facebook pictures with the above filter. By doing so you are supporting the American Organisation ‘Autism Speaks’.

Autism Speaks is criticised in the US by ‘Actually Autistic’ advocates because of their previous research focus and support for families and autistic people.

So please don’t ‘Go Blue for Autism’ especially if you’re in the UK.

A grassroots ‘Red Instead’ campaign exists online. I certainly support it myself.

‘Light it up Blue’ attempts to light landmarks and buildings in blue, again it’s Autism Speaks and it’s not an international campaign supported across all countries by all Autism organisations.

I think it’s inappropriate in the UK, sadly some building owners have participated in the UK.

6. Should I post a jigsaw logo on social media in support?

No. There’s not a recognised worldwide symbol.

The Autism Awareness Ribbon of the American Autism Society uses the puzzle piece design and although colourful and distinctive is based on a 1960’s jigsaw design that the UK’s National Autism Society initially used.

The puzzle piece or jigsaw piece was thought to represent the mystery of the condition and isolation of a child with autism.

Significant that the NAS moved away from the imagery as have others, such as the American Journal ‘Autism’.

It is offensive to many advocates, although it remains popular amongst some parents.

My thinking is that I have nothing missing, neither do my sons, and that we’re not a mystery or a puzzle either.

A better symbol for neurodiversity is the infinity sign, it has been used with multicoloured or rainbow variants.

7. ‘It’s just a thing boys have.’

Increasing numbers of women and girls have been diagnosed in recent years and some of the best actually autistic advocates are female and have a brilliant grasp in describing the condition and difficulties in writing.

Diagnosis for girls may be trickier as they have been better at masking or disguising the condition.

8. ‘Rain Man’

Quite a film and performance from Dustin Hoffman as Raymond Babbitt, but his savant character was based on Kim Peek, who was previously diagnosed with autism but thought to have FG syndrome, a genetic defect.

The ‘Rainman’ shorthand description isn’t accurate and isn’t the experience for autistic people and the parents of autistic children.

Often the words as used as an insult.

9. ‘Sheldon Cooper / Saga Noren’

Sheldon from ‘The Big Bang Theory’ is often thought as a high functioning autistic character and although the portrayal by Jim Parsons may point to many of these traits, the show has never made reference to him officially having Asperger’s Syndrome or Autism.

Similarly, Saga Noren in ‘The Bridge’ or ‘ Bron/Broen’ is a Swedish detective played by Sofia Helin has many traits and signs of autistic behaviour but the show never specifies her as autistic.

The characters may point toward autism and display signs of things that autistic people recognise, but are not specified in their shows as diagnosed autistic people.

Recent TV shows such as ‘The A Word.’, ‘Atypical’ and ‘The Good Doctor’ have addressed autism more directly and not just as a character quirk in a drama.

Possible that more TV shows and films will address matter in future.

More positive representation can be in reality shows such as ‘The Autistic Gardner.’

10. How can I help?

Donate.

Give to local autism groups that fund or provide services to families and autistic individuals.

Other charities for often horrible and scary, but ultimately curable, illnesses get more exposure and more funding.

Autism is lifelong and affects a person from early childhood onward. It affects their ability to work or study and studies show lower levels of employment and higher suicide/harm risk as well as lower life expectancy.

Council Social Care and NHS services aren’t there in many places and donating can help to fill the gaps

Understand.

Read Steve Silberman’s ‘Neutrotribes’ or look at information available online about ASD, Autism and Aspergers.

Campaign.

Ask your MSP, MP or similar what they are doing to help. Raise Neurodiversity with others. See how families are affected and the help that can be given.

Be a friend.

Support those you know or maybe learn enough to know ‘that kid’ in the supermarket or train might not be naughty, just different.

Read #ActuallyAutistic posts online.