My last post on Aspergers. 

I received my PIP Tribunal letter. I’m only worthy of the 2 points for difficulties in communication.

I’m not Disabled then. 

I’m hurt. I tried and ultimately the verbal traps got me both at the medical interview and Tribunal. 

I wouldn’t know or understand the verbal traps. The time I took to explain how i am to them was wasted. The letters and my responses 

It’s another cure by DWP. I can’t have difficulties, they’ve said so.

Their nurse and decision maker say I can’t have difficulties as I can drive and I work.

So, The Asperger’s Syndrome I have or thought I had is just a fraud. 

I need to see my GP to see the Community Mental Health Team to see the Adult Autism Unit to get un-diagnosed.

I’m normal. Must be.

My difficulties must be ones that normal able people face. I can’t be autistic or actually autistic then.

If I don’t qualify for PIP then I’m not Disabled. My contemporaries at my former autism coffee group all get PIP, all get help and support. They must be genuine whilst I’m fake.

I apologise to my readers some of who are autistic and actually autistic. I meant no harm. I thought a diagnosis meant that I was, but it’s not enough and it’s not right for me to comment further as I can’t be genuinely autistic.

I thought I was, but the DWP say I don’t qualify for PIP. I shouldn’t need help or support in my life.

I won’t need their financial support. I apparently can manage. I apparently can do everything a normal adult can do. 

So. Thanks if you’ve read my previous posts. I’ve cleared my Twitter of autism and aspergers as obviously I’m not one. I’ll unfollow on WordPress the autism and aspergers blogs too.

The Tribunal was the last point of appeal for me. I can’t do any more myself. They won. I’m cured. I’m not a Disabled or Autistic person.

I now need to ask for the diagnosis to be removed and taken away.

I’m down and I will be for a long time. I’m sorry but I don’t believe I’ll be able to read replies to this post, even if well intentioned. 

I’ll now concentrate on trying to keep my job, trying to keep seeing my children. Trying to keep from further debt and financial mess. 

I’m not autistic any more, so I’ll have time and ability to try all that.

Again. My apologies if you’ve read my posts under autism, ASD or aspergers before, I’ll remove the post tags.

Tailspin 

Sometimes, I know that my mood and anxiety are worse. Like it is just now and has been in recent weeks.

I’ve struggled since having to attend the PIP interview in February and the first PIP decision in March. I think the pressure of that has told on me. 

It’s been a background worry and just a constant thing on my mind.

The ‘lost’ PIP2 form last year, The waiting for the first decision, the waiting for reconsideration and the realisation my only hope was the Tribunal.

Feeling a bit more hopeless each time I was rejected and feeling frustrated and lost and not listened to.

The lead up to the Tribunal meant about 80-100 pages were posted to me. 

Initially, that was quite intimidating and a set back in terms of seeing so much paper. 

Basically, I had an early night after seeing it in envelope. It looked overwhelming.

Leafing through it later, I realised it contained my PIP1, PIP2 forms, paperwork on the lost PIP2 and that most of the other content was actually from me. 

There were copies of their decision letters and the only insight to their decision basis was the written account of the interview I had with the Healthcare Professional.

The decisions are short and to the point though, but hard to understand the perspective, anything I said wasn’t enough or commented on negatively.

Seeing the medical report properly made a real difference and became very clear that my impression of it and their impression of that interview were very, very different. 

I go on Wednesday to the tribunal. 

I started in May 2016, thinking maybe a little help. I had read comments saying don’t be put off applying. 

I particularly thought of the Survival pamphlet by the late Marc Segar – ‘try not to see it as cheating. If you have had a hard enough life then perhaps you deserve this.’

I had read into PIP, I was at a stage after diagnoses where I thought I understood condition and how it affected me (a year and a bit after diagnosis)
My mindset is now that if I lose, I lose. 

I’ll have to adjust to being ‘slightly’ disabled or not the same as the autistic people I’ve met in person. It may mean I don’t return to groups.

Everyone else in my social group doesn’t work, so it very weird.

I truthfully haven’t thought that I’ll ‘win’ or get PIP.

I’m at the stage of thinking, that it’s more about the principal of the thing. 

I’ve asked for help, described my life a bit and been truthful. Did all I can in terms of using my written skills. I guess I can only attend, see/hear what’s said and try to note as much as I can.

It’s been a journey. 

I’ve learned a great deal about trying to do things on my own and being unsupported, but it’s been stressful, horrible and has had me beat a few times. 

I’m maybe being downright stubborn, I’m maybe seeing the thing too literally, but some help maybe would have been nice.

I said to myself I couldn’t sit through it with a stranger. I didn’t want someone else there at the medical interview. I guess I thought that was too much in communicating and arranging.

If it’s a no from PIP, then I need to find out what actual support is available in my situation. 

I dread talking so maybe I do a script and type it out, maybe I begin thinking about how to go out and do things or be around people. 

That’s scaring me a lot and would be a huge jump from where I am and where I’ve been.

I know the adjustments I need, sound, light, rebound time. I still crash. Lose verbal skills, shut down and need to process how I am over things. 

But, for now I can just hope a little amongst the worry and stress and catastrophe thinking. 

(I’m out and finished and have no idea how it went. it was all a bit scary and got really thrown by my bag being searched before going to waiting room.)

Cutting the Input (Aspergers)

This is a Flare Audio Isolate earplug.
https://www.flareaudio.com/

It has worked brilliantly for me in reducing the noise. The metal is aluminium and its combined with a soft earplug.

So delighted with these I ordered a second pair and extra earplugs.

It doesn’t entirely cut off all sounds, but plenty enough. The ones the annoy me. The near constant ones.

My hands are big as are my ears, but these in my opinion are better than silicone ear plugs. Yes it’s strange, but I’m blue glasses guy anyway. 

I take one out if I need interact. Otherwise both in and it’s great. 

A date and a time (Aspergers)

It’s came in. I have a date and time for my PIP hearing. I’m the usual, anxious, worried, scared, at times terrified. 

I have looked and looked away from the screed of papers. 

I’m writing this on the train, my head has been full. 

I picked the one with ten minutes to go, so I could sit with my bag of food shopping, my rucksack. It’s a better evening than morning so I’m carrying my jacket

I feel warm and sweaty. It’s too hot for me. I’m carrying stuff. 

I’m out of sorts. 

I’ve been uncomfortable walking along Argyle Street from the shop I got food in, I hated how busy it was and all the people and all the eyes. 

I’ve hated the noise of buses on the streets and music coming from the shops. 

I tried avoiding a chugger with ‘sorry bud’ said loud and clearly. 

I’m not enjoying people getting on the train and acting in their demanding way for a seat, especially those walking through the train and coming from behind me and setting off the doors between carriages. 

I’m trying to look away from people I’m willing the train to move, bleeps to go on the outside doors. So I can be a bit less stressed for ten minutes.

The doors close, I feel the air pressure change. Two men are talking 10 metres away at the doors, I’m hearing every word.

 I’m feeling every movement as the train crosses the x’s of the points. 

A family burst through the doors behind me luggage and noise and a women lurches near me with her hair and her smell. I lean away.

The papers from the DWP imply I’m not that bad and things are okay as I’m capable of driving.

A mobile rings on the carriage it’s an insistent grating tone that distracts me, then another different one. 

The train lurches at points at Shields Junction. I’m sweating now. 

I have to move again in my seat as someone is coming right at me to work those doors. It’s like his arm is reaching at me. I’m trying not to react.

I’m not happy, I want this over.

 I have too much stuff with me, Those men keep talking and talking and talking.   

The door again, the same guy coming back into this carriage. The same things as I hear/feel/notice movement.

Hillington. Over soon. The fields now outside. Yellow, must be rapeseed. 

He’s standing again. Why? 

They’re talking. Almost Paisley!!

I’m off. 1757. Phew. I’m standing, breathing.

 I want the train away, the crowd getting off here away. 

I message my daughter. Put everything together and go. 

I walk from the station, people doors, moving around, getting out.

The street, cars zooming past. I feel the rush of air, if my feet are still, the vibration too. 

I’m tense. I want to cross. It’s three lanes, an old wide street made one way. 

I get across, keep moving, there’s a women taking stuff out the Tattoists to their bins, I’m going sideways a bit to avoid her when she comes back. 

I’m past her and away thinking how I think and what I do and what I’ve started writing.

I get to the other crossing point, traffic flowing but a buzz in the air, a helicopter, black one. Lights change I can cross. I stop and take a picture (for you).


I keep going, the buzz is still as loud, rotors. It’s stationary in one place in the air. I want it to go.

 I get near the park, the pavement is narrow and a girl is coming the other way towards me, I speed up, get to wider bit, go through the park.

Helicopter, Fountain, kids playing, people talking, birdsong, trees swaying and the noise of their leafs moving in the wind. Road cars, noise, a truck over a drain over. Clank. 

I’m out the park. Nearly home. The helicopter moves slowly. Still the noise and buzz and loudness.

The outside door, moving my jacket and feeling for keys. I keep reaching in same pocket, I sway, bags. 

Finally keys. 

In and up. Door open door closed. 

Bags down, sweaty shirt off over my head. Shows off. Feet. Ooh.

Then the letter for the tribunal and it’s date and time. They think there’s nothing wrong with me…

This one’s for the Aspies x (Aspergers)

I’ll never understand my condition and my thoughts.

At peace, it’s beautiful and I see clearly and can see clearly and appreciate music, art and literature. I can be creative and positive and free and almost smile.

But it’s the fogs and clouds and darkness I dislike the fuzziness and cotton wool cloud that I make do with in the daytime, the bright lights and the noises, the too loud voices, the irritating sounds and the heat and the warmth and the whole cocoon of it all. 

My intellect gets me so far, I’m smarter than that big cloud of stuff, but it’s continual and it doesn’t ever stop.

So I block it out. The headphones, the ear pieces, the coloured glasses, hats anything to lessen it all. 

To breathe cool air, to feel gentle textures to move gently, to float, glide, to be effortless, to whisper.

To fascinate in detail, to appreciate things, to see every detail, to know nuance and the parts and bits and colours and..

It comes to fog. Blank faces, words misunderstood, raging at ignorance and incomprehension.

Knowing this language and the beauty of its words and sounds and inflections, but stumbling at Hi.

Liking people and wanting to be at one with them and finding the corner, the edge, near the door.

Days and time and being lost in a thought that’s moved away as quick as their conversation.

The watch and the minutes and being stuck doing and thinking and not knowing it’s moved onward.

Scheming and planning and hoping and getting bogged down when it comes to action.

Being approximately normal and knowing the gap is vast and the leap there is huge.

I’m no poet. I’m no singer. I’m no artist. I live for the eyes and smiles of three people I love.

Visible/Invisible (Aspergers)

I get my days where I think I’m part of the crowd, not much different to other people.

Thing is, I don’t see outside of myself and I don’t fully understand how I appear or come across or what I look like, sound like or seem.

It’s difficult as my perception is that I ‘fit in’, maybe I’m more odd than I know.

I have coloured lenses on my glasses and with those, I’m more aware of being different and there are times wearing them is difficult and I’ve had reactions that do upset me. 

I try and not get too focused on them, but if I’m wearing ‘my blues’, I just keep away from people, go around and not be too interactive. 

Before getting my ‘blues’ I used my sunglasses for same purpose, dealing with lights in places and got slightly less of a reaction, but some oddness from people.

I don’t want to be specific but sometimes, just being different is enough to throw people and it’d be lovely not to have a reaction or feel different or odd. 

I think when I became more aware of reactions, it brought my mood lower. I think when I realised my appearance I felt a bit hurt. A bit thrown. Not too many people ask about the lenses on my blues. 

But also, not too many people comment on my ‘otherness’ on a day to day basis. I think of it as an approximation. My masking isn’t always ‘on point’, it’s close to right at times and close to normal at others. 

I have to think eye contact and hand gesture and think slow speech and volume and tone of speech. I need to think rhythm of voice and use of language. 

Dialling it down, if you will. I need sometimes to phase out of things and at other times not to ‘ghost’.

So, I can probably think as I don’t have a stick or a wheelchair that I’m not disabled in that obvious way and that I’m invisible disability or whatever but there again are people with horrible internal conditions that are of course neurotypical. It’s thinking of a scale of issue for me.

I can tick incurable. 

I can tick life long.

I can tick degenerative (a Fixed viewpoint and aging won’t help). 

I can say my quality of life is affected and I can say that it affects my day to day decisions. 

My executive functions are wonky, my communication is wonky and so are my senses in that I hear and see and smell too much. 

My balance is probably a fraction off, it really shows when I ride my bicycle. 

My humour can be off and I can be inappropriate and I can be out of order. 

But, still I don’t qualify as ‘disabled’ as first time around I was refused PIP. (Believe me that hurts)

So, I keep trying and going and hoping something gives me a break. I’m under overwhelming stress from my life and what’s going on. 

I try not to break myself because of it, but my meltdowns this week have thrown me and put me off my usual sort of ‘keep going, don’t break’ mentality.

I know that maybe I don’t look different, or don’t seem disabled. My condition is a difference and if the world was fair, I’d get some adjustments and some thinking space in a lot more situations. I think there’s a chance of better understanding and some amount of leeway for how I am. 

At the same time,I don’t think I should have to feel stigmatised by wearing my blue lenses or to ever feel that I should need a badge or an armband or something to get a seat on the train or be treated normally (nicely or with empathy.)

So I’m Invisible/Visible. Disabled/Able. Problem/Normal. Believed/Doubted.

I didn’t choose to be. Just am.

How am I doing? (Aspergers)

‘So, how are you?’

“.. er..”

I can’t articulate verbally how I am, not sure where to start I guess.

“Stressed” – well yes, emotionally, financially, mentally and probably physically.

“Sore” – head is sore, I’m soaking in noise at work, I’m feeling sore from daft physical pains I’m also having. I know I’m tired.

“Upset” – most of the time I’m sort of feeling something, not sure it’s that or..

“Angry” – now and again. Frustrated at where I am with more than a few things.

“Helpless” – well I can’t ask for help and that’s a big bit of my problems. I also feel I cannot be helped either.

“Unhappy” – can’t think if or when I was last ‘happy’ as such.

“Depressed” – as far as it goes it doesn’t lift.

“Lonely” – I have my kids. I see people daily. I don’t really have anyone as a friend or that I talk with.

– so that’s today. 

Tomorrow will be similar and so will the day after that. 

I hate the way I look, I hate my weight, I hate my day to day life. I’m not looking to sugarcoat anything, I get so far, I keep trying and trying and getting nowhere.

I want to be ‘better’ or to sort of cure myself, but I feel I don’t get the chance. I don’t get the time, I don’t see how I can get help, I don’t think there’s help out there for me anyway.

I do have dark thoughts. I do think I’d rather be dead. I have children and I can’t do that to them. There’s no easy way out like that.

I’ve tried doing all the right things, I’ve tried to think what life I want. I can’t. I’m trapped in my conditioning and my responsibilities. 

I need to work, I lose everything if I don’t. I need to see the kids, I need to try and be there for them.

I know I don’t feel good, I know I look terrible, I think I want not to be as I am, but existing is living on a lower plain and keeping going no matter what. 

I get teary. I want to cry, it never comes. I can’t get to feeling sorry for myself. It’s my mess. I own it. I don’t want sympathy particularly. 

I’m not at an ebb to take on a relationship, I’m not at an ebb to even feel I could start again. What can I seriously offer?

So, I know the theory. I see where I am, I plan to be happier. I count the blessings each day, I set out what I’m grateful for. I go for walks. Do small phone calls to people. I think things aren’t as bad as they seem to me. I go to the doctor, I ask for help, I speak to someone. 

Yeah, I know CBT. I know it, been there and done it. Don’t want particularly to try today. I just want to get to the bit where it’s tonight, I can make food and flop on the sofa for an hour or so.

That’s as good as it gets.