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.

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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.

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.

Slightly Adrift.

I bet you thought before you left

I’d just sit in silence by myself

Turn this house into a jail

Dyin’ slow in a livin’ hell.

I shouldn’t really use song lyrics to try and understand life.

I guess I’ve been there though.

Sitting myself on my own, making the best of it, distracting myself and killing time until bedtime through tv and the internet.

By default, alone.

The emptiness when I don’t have the kids, a kind of pointless empty feeling. A pit in stomach feeling.

Same time, I either don’t want to go out or can’t afford to go out, so I have that lack of option pinning me down.

The idea of going out alone sometimes is overwhelming and often unappealing.

I don’t have a car usually, so getting in one and driving somewhere isn’t an option, even for a random coffee stop.

I try and immerse myself.

I get distracted and fail too. I can read the sports coverage or wiki articles or something else.

It’s temporary head filling.

Temporary distraction.

I read on philosophy, I read on how brains work. I read on the search engine on ‘Autism’ and ‘Aspergers’ set on last 24 hours. I click through the tweets on things like dementia on science journal feeds.

I probably want human interaction. I probably need it.

I’m adrift from ‘friends’, strained with ‘family’ and without a clue in many respects.

I don’t want to go out drinking alone, I don’t see a coffee shop and a book to read, as working as ‘a thing’ for me either.

There’s days at work where I don’t get any conversation directed at me.

I know why, I know I’m ‘difficult’ and that I get punished for ‘outbursts’ by being shunned.

I can’t really initiate conversation well and I don’t want to scare people by doing ‘odd, but active’

It’s unfulfilling and dull, but I can’t force myself into other’s conversation and it’s a thing I’ve generally given up on.

I find what peace I can in the day and at night. I can force myself on at work and push myself to be distracted at home too.

I still love music and songs and words and it gets to be my refuge.

Headphones on and nothing else to process, nothing more going on in my brain but the music, words and the tune.

But once in a while, I get unsettled at a lyric or an emotion, and I’m holding back tears or trying to quell the turmoil that’s been sparked.

Some songs perfectly capture where and how and who I am sometimes, sometimes too well.

(Lyric quoted is from ‘Record Year’ on the Mr. Misunderstood album by Eric Church)

‘Imagine Black..’

‘Imagine Black.’

‘No., really Black.’

‘Yeah? But, Blacker than that..’

Is how I wished I’d answered a question today.

I don’t think I answered well, I never can when it comes to describing depression.

‘When’s the last time you were happy?’

‘Dunno.’ is the easiest I guess.

I can’t always adapt quickly enough to answer verbally.

A lot of long and maybe lousy answers.

I got to say what I needed to. I addressed my 2017 issues.

I maybe set the story backwards. I maybe jumped from point to point.

I maybe didn’t have it ever framed in that verbal context.

I’ve left my hair and my beard for today.

I looked similar at my PIP medical. (The one where my lying Scottish NHS nurse practitioner said I was well kempt.)

Did I get over what I needed – HELP.

My cue cards said

ANXIETY DIAGNOSIS.

DEPRESSION DIAGNOSIS.

We talked medications, depression and length and extent. I think I was asked can I remember a time without it.

I cued myself on ‘The Blues’ and my ear plugs.

I explained needing to keep going and keeping doing and my fear of stopping.

I couldn’t explain depression and the lows.

I fumbled at ‘friends’, I fumbled at a few issues and questions and about everything going on.

I maybe got to where I was and how I was and my fears and my concerns and what I needed.

I don’t know if they can actually help me. Nice people but, what can they access for me.

I can’t face CBT. It won’t help. I do know that the need to communicate. The phone a friend bit, the build up the communication and contact part. The re-establish ties and do the basics in talking again and going for a walk, going for a coffee.

Now, that’s it in a nutshell.

Cognitive. Yeah, that I can do. Thinking is my thing. I’m an intelligent failure. I can see through that path of treatment.

I need more like Counselling or something with a structure.

I sighed today. At times I wish I was stupider and more social. That I had the real friends.

So, I’ll see what is decided that I need. I might be an expert on me and my condition, but I’m not medically qualified to make the decisions.

Long Way

I think I finally ‘get help’ this week.

Been struggling since October and kind of ironic that appointment with Community Mental Health is at a point where I’ve had to get through ‘the worst’ myself.

Rather than tell a story to them I’d really much rather try and direct them to what I need.

I think that is formalised Diagnosis of Anxiety and whether I can get that for Generalised Anxiety and Social Anxiety is my first question.

My other is a formal diagnosis of Depression. I’ve lived with it all my life. I need it confirmed and certified.

I’ll have to tell the nurse, presumably, that I can’t follow their script to CBT.

I can accept they’ll follow whatever the GP wrote to say, so I have to think through a polite way to say ‘Stop. This is what I need’ rather than go with the flow of the appointment.

Being Listened to is the thing that I need.

I may need to write cue cards and just show them.

I may need to sink the nurse’s attempt to do a ‘usual first appointment.’ By being awkward and uncooperative.

The risk in that is that I don’t get help as I’ve not did things in the way that they want.

It makes it critical that I get those points in before they start and especially get across that I’m Autistic and not needing a neurotypicals treatment for ‘just’ depression.

So, yeah I worry about ‘getting help’, I can’t just ‘be relieved’ and go with that.

I know I need more than that and I’ll try to ask but if they’re Interviewing as a first appointment I’m scared of a screen and someone at right angles to me.

I’d like to know if other specific medication can help or if I’m trucking along. I don’t need time off or a rest or anything like that.

Help and something to guide and soothe me please.

Obviously I’ll write after Thursday and I can only hope for the moment, but to temper that with a dose of realism too.