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.


Glasgow’s Jigsaw Logo for Autism Friendly City Centre is Wrong and Offensive.

I was aware of Glasgow’s plans to have a more Autism Friendly City Centre environment. I completed some online surveys and read the information that had been posted.

Then the logo was announced.

As you see above it uses a ‘Jigsaw Piece’ or ‘Puzzle Piece’ design.

It’s based on this. The multicoloured jigsaw ribbon that The Autism Society in the United States of America use. A similar blue single piece design is used by the controversial ‘Autism Speaks’ group.

The design of a Jigsaw comes from The UK and the National Autism Society.

The logo was created in 1963 by a parent of an autistic child. It represents the puzzle of autism, the missing piece and a sad confused child.

Ultimately other groups such as the American groups used the design and modified it to their ends.

As an ‘autism parent’ I get the sentiment as my son doesn’t speak and is non verbal.

As a #actuallyautistic person with a diagnosis myself, it gets me angry.

It represents a childish image of autistic conditions. (No-one grows out of it)

It says there’s a mystery to autism and that it’s unfathomable. (Many of the sensory and communication issues aren’t that hard to discern.)

It says autistic people have things missing. (Most of us are complete, in having heads, bodies, arms and legs, our heads are wired differently)

Therefore to me, this choice of symbol by Glasgow is wrong and offensive.

I’m aware that the design is the work of a schoolchild and reports state that the person is autistic too.

I don’t easily want to upset anyone, especially given the context of the idea of having kids design the logo.

It’s also important for ‘Autism Awareness’, sadly that’s not ‘Autism Acceptance’. Minority groups for race, feminism and LGBTI rights seem to get ‘Acceptance’ on the agenda rather than just ‘Awareness’.

The initiative is obviously well meaning, but the criteria given to the children at the schools needs questioned.

What were they told to design?

What were they taught about Autistic People, as child and adults and what were they told was acceptable as symbols?

I visited the exhibition of the children’s art work and the preponderance of the Jigsaw symbol on designs suggests that they were not.

To my eyes 80% of designs included either a single jigsaw piece or the combined pieces ribbon design.

One even had the slogan ‘put the pieces together’

A failure in teaching?

Or a failure in understanding by grown adults that set the children the task.

Was ‘Neurodiversity’ mentioned in any context or any point of setting the task?

My other issue is that Strathclyde University’s affiliated Autism Network Scotland were on the panel that chose the winning design.

Was someone from ASN content to accept such a design having knowledge of Autistic People?

I can’t understand the Council not consulting their Autism Resource Centre on this either, surely someone from there would have queried this design.

A step back for the #actuallyautistic and another example of the jigsaw/puzzle piece being used, despite how people feel over it.

The Autism Journal in the US recently removed the Puzzle Piece as their logo.

Autism Journal abandons Puzzle Piece

“As one would hope for a research journal, what led to this change was research,” said David Mandell, an autism researcher at the University of Pennsylvania who serves as the journal’s editor. “Given that we published that study, we thought we should act on it.”

“I really thought it was time to modernize and get rid of the puzzle piece and go with something more up to date and less offensive,” Brook said in a podcast about the change.

“The puzzle piece is therefore no longer an apt, or even adequate, symbol for autism as we currently understand it,” the journal editors wrote in an editorial announcing the change. “The move away from the puzzle piece here and towards our new design is not only about how we choose to represent autism, but it is also about proving that we represent that broader change itself.”

All in all a good move.

Here’s the research behind it

Participants associated puzzle pieces with imperfection, incompletion, uncertainty, difficulty, the state of being unsolved, and, most poignantly, being missing,” according to findings published online this month from researchers at the University of Wisconsin–Madison, Ursinus College and the University of Kentucky

it went on

If an organization’s intention for using puzzle-piece imagery is to evoke negative associations, our results suggest the organization’s use of puzzle-piece imagery is apt,” the study authors wrote. “However, if the organization’s intention is to evoke positive associations, our results suggest that puzzle-piece imagery should probably be avoided.”

Disability Scoop Article

So will Glasgow acknowledge that this logo isn’t progress for Autism Awareness and will the perceptions that are behind the jigsaw piece design be challenged or taught properly to children?

Never be a truth teller.

The closure of the Children’s ward at Paisley’s Royal Alexandra Hospital by the Greater Glasgow and Clyde Health Board was approved by Shona Robison, The Scottish Government’s Health Minister.

It was followed by a blizzard of stupidity from SNP supporters defending the decision.

Wings Over Scotland goes off in his typically truculent way.

5 minutes away, 10 minutes away.

They refer to the relocated Glasgow Hospital for Sick Children on the site of the Southern General Hospital with the Queen Elizabeth University Hospital.

Somehow this one got over excited and threw in photos of the old yorkhill.

Yorkhill is still shown on this map that is shown. There’s one specialist RHSC and it’s at the Govan site.

‘It’s only six miles away.’

Others travel further.

‘Just a ward in an adult hospital.’

‘Are these people for real? ‘

Yes there’s lots that live in Paisley, Renfrewshire and other areas affected by the closure.

My family amongst them as both my sons attend appointments there.


‘It’s only 10 minutes away.’

I don’t routinely drive and use public transport a lot. I know that’s untrue and I challenged that.

By bus a minimum of 33 minutes, from the one hospital to other 52 minutes with a change.

Data from Traveline Scotland, the public transport website.

The QEUH complex is also at other side of Renfrew and Braehead and I’ve been that way by bus too as well as driving at weekends and it’s not brilliant journey either.

Now, of course, I wasn’t supporting an SNP government decision.

‘How many live at the old hospital?’

So.. don’t be a truth teller kids. Don’t use your own mind. Don’t support independence without turning your brain off.

I fully understand the desire to try and shield this decision from Criticism by Scottish Labour politicians, but the defence of the indefensible here is bizarre.

It’s the closure of a Children’s unit in an NHS hospital that has Adult and Maternity services on site.

Paisley had some of Scotland’s poorest statistical postcodes. That poverty extends to car use.

And to finish, very strangely for a self confessed pedant, the ten minute claim stayed in his article online.


Excluded by GP surgery for Autistic Meltdown.

As it says above. I’ve been told that my GP surgery will exclude me as a patient.

I’m very worried and not sure what I do. I looked for help in November and got nowhere. I kept asking for my repeat prescriptions and ultimately that’s what I did wrong.

I asked for another repeat prescription before Christmas as I knew my medication would run out over the holiday period.

I made the request on the 21st December, tried collecting it on the 22nd. The pharmacy said they didn’t have the drug in, so I left it with them.

On the 29th I tried to collect again to be told they had no stock. I was out of tablets at this point. I was given back the prescription. No one contacted me to say there was an issue and I was disappointed, but had to walk into town in any case.

I went to the biggest pharmacy/chemist in town and they were surprised I couldn’t get it from my regular pharmacy. I showed my white Autism/ASD card in case I wasn’t making sense. Fortunately they had the drug and the type I normally get.

I was relieved. Did some shopping and walked back. I realised the GP surgery was open and I wanted to query my dose going down.

I had previously been told by the GP that I may want to step down my dose, but at the same appointment I had said I was applying for PIP and had my appeal.

The doctor expressed surprise when I said that and I very much felt disappointed as they didn’t seem to understand that I needed ‘help’ too.

My PIP meeting or first tribunal was soon thereafter and the result effectively ‘broke’ me. I felt the panel was fair apart from the GP Doctor that used verbal tricks on me, effectively saying I worked, I drove. Much the same as the PIP claim manager’s view.

At that point, I was existing and I just kept going to get through the spring and summer. I got casual on taking my prescription and some days didn’t bother.

I had a bad time in October and November with a crisis point and again, I kept going. I placed in repeat prescriptions, I took my medicines more regularly as I knew I was on edge and struggling.

At the middle of November I asked for usual repeat prescription and used the paper form in surgery to do so. It was light of the smaller part of the dose. I firstly thought it a mistake at the pharmacy, then it clicked and I realised I was probably being stepped down.

Now, at the time and as I said, I was struggling. I didn’t have any excess tablets or anything to keep me at previous dose and I realised I was struggling and that I was further down and further prone to outbursts and to meltdowns.

I had a few incidents before Christmas and I struggle with the period due to issues with family. I had a disappointing contact with a family member before Christmas too.

All in all, not in a good way and very much keeping going at the level of medication and through daily routines and keeping myself right.

I probably found over the period that regularly drinking coconut water for the potassium and eating plain yoghurt to help my gut bacteria did me some good physically and mentally.

So, a few difficult months, a major setback in getting help with ‘PIP’, a crisis point at the end October and start November and a dip in mood and motivation.

I snapped at the surgery on the 29th December. I had just been disappointed by the pharmacy next door with the prescription. I knew the prescription was ‘light’ and didn’t like idea of having to ask for the additional amount.

It was a milder day than some over the period. I had to take my jacket off as I waited. I was foot tapping/ moving and there wasn’t anyone else there or waiting.

I tried to be polite with receptionist, but maybe I was struggling.

I waited. Was told to ‘sit down’ and I maybe didn’t like tone or way I was told that. I saw the two Doctors talking and phones were answered and I got aware of time and that I had bags and shopping and that I needed to get home and put it away.

I realised I was hot and realised I had to see kids and do things.

I started to go. I think the receptionist said something to me, I tried to get to the doors, but one of the doctors got on my way.

By that point I had gone. Melted down, I can’t remember what I said but I was angry and shouting and unhappy, I just needed out of there.

There wasn’t a point of return. I had had enough. Shouting and the frustration of everything got to me.

I don’t think I swore. I may have. I didn’t refer to anything physical or otherwise about the Doctors or receptionist.

It was pure frustration and an autistic meltdown.

I tried to relay this at my appointment on Friday, it probably came across as a rant.

I never really got across that I needed help. For all the words, no-one got that. No-one saw the hurt and pain and stress and anxiety.

They just saw an individual being rude and shouting angrily. I must have a more limited range of facial expression or affect than I suppose too.

Which is fine, they have to do what they have to do, except for the fact that by excluding me from GP healthcare, they are doing the same for my young sons, one of whom has classic autism and is non verbal.

My condition is such that I’m embarrassed now to approach another GP surgery. I’m feeling very hurt by the decision and I feel my condition and needs haven’t been taken account of.

I haven’t had much help after being diagnosed as autistic and I’ve struggled on with the drugs and trying my hardest not to lose my job and not to lose my children.

I might present as someone polite and intelligent and not too much of a problem or an issue, but surely my notes or the patient systems flag what I have.

I’m disappointed and hurt over this and I have no idea where to turn.

I’m dreading getting the letter.

Tried to get help.

Very upset right now and have a tension headache at the back of my head.

The emphasis at my appointment was on my previous incident and how wrong I was about my behaviour.

Also that I hadn’t attended over summer and should have stepped down my prescription, so that’s why Last two prescriptions didn’t have it.

The practice are meeting on whether I’m allowed to be a patient too.

I was given a prescription, I don’t know if I’ll get a referral to community mental health.

So, no real help and the worry of finding a new GP. I don’t know how to start with that and I’m scared of getting a letter saying I won’t be treated.

I now have zero faith in GP Doctors. I feel they are charlatans and quacks.

I’d get everything going if I was an unemployed drunk or drug addict, but a life long condition? No.

I had written stuff down, but as usual, I didn’t get to speak. I had someone with me to help, but the focus was on what I’d done or not done.

Last Month, I had to go twice to the pharmacy to try and collect ‘the wrong’ prescription.

The pharmacy is next door to surgery, but anything I said about collecting drugs was treated as ‘nothing to do with us’ – if I can’t get the medication or it’s made difficult for me, then I will get upset and I did meltdown that day.

It was my birthday and the last thing I wanted was chasing a prescription and going to different chemists to get it. I didn’t understand why they couldn’t get it and I had been patient and in to ask for it twice.

Somehow this has nothing to do with the GPs. (Same Building) (patient with autism and depression)

I was berated about not attending from April onward, but after I saw another GP who questioned ‘why are you applying?’ When I mentioned PIP, I didn’t really want to go back. I saw that as ‘you have mild autism’ and that whole connected myth. So, there was no prospect of having a doctors letter for PIP or anything helpful.

I also had the experience of a GP doctor tripping me up verbally at my PIP first tribunal.

I just wanted to collect prescriptions , but I’d been erratic at asking for repeats and I don’t know what their systems say, but it’ll be my fault on the whole thing. I accept that as some days I forget stuff and sometimes the drugs don’t do anything.

I accept having a meltdown isn’t good. All I’ve ever wanted was help. Just help.

I don’t understand why it has to be so difficult and so hard to just get a bit of help.

I’m frightened and I’m worried and I haven’t had any help.

Trying to get help

I have the GP Doctor tomorrow, my gateway to health services..

I’m apprehensive. I melted down last time I was there.

I was upset, angry, annoyed. I found lower prescription doses and had near ran out of the antidepressant I was on.

So I’m dreading it. But I need help. I was at the edges for a while, I thought I could just find a way, but I guess I couldn’t.

Some days, I guess autopilot and need to do helped. I know about needing my things, needing sleep, needing something else.

I think I get somewhere by keeping going. I know it had a cost. I think I’ve paid my price. I’ve given my due.

I want…

Maybe not to feel as..

Maybe not to..

Maybe to be..

Sometimes to be..

I know myself. I disappoint myself.

I’m scared. I think I need to get help and taken seriously and have just that bit of help.

Not chemicals. Not different drugs.

I don’t know what else to say. I don’t know what I can do without just asking for a bit of help.

That’s it. I haven’t much more. I just need to get through.

Part formed thoughts

I usually write with a pre-formed idea of a subject.

Today, I’m probably writing something that’s been in my head and sort of given for a while.

I’m separated and have been for a while and as the months go on, I enjoy that some things are easier for me and that I cope better and that I do better.

Then, again. I’m on my own.

There’s me and the walls and the TV.

The distraction is there, I can watch things, I can be online, but I’m not going out, I’m not with people (apart from when the kids are here.)

And that’s it. I’m realising that I’m lonely.

I’ve written before on the fear of involuntary celibacy and to an extent that’s where I am.

I guess I can challenge involuntary as I’m not going out and I’m not meeting people. Simply, I just don’t have confidence to do that.

I’m maybe unsure about moving on, I’m unsure that I’m ‘worth it’ and I have this dread of ruining someone else’s life. I’m complex and not easy and I’m certainly no ‘catch’.

I can think ‘deserve to be happy’ or ‘try to have a life’ but, do I accept what and who I am enough to forgive myself the things that I need to?

How do I take myself forward enough to do that and if I am ready, then how can I push myself to try?

As I said, part formed thoughts in my head that I’m expressing imperfectly.

I don’t think I’ll ever get that part of my life right. So, do I give up?

I’m older, I’m broken in terms of the thing I have and maybe I just accept that it’s a social thing and a can’t do.

Maybe I find other things to occupy myself and just try harder to lose the thoughts.

Maybe in time and by not looking or not thinking about it, then I’ll just be happier.

But is that giving up?

I’ve only seen the ‘first dates’ and ‘undateables’ stuff in passing and I cringe and I get uncomfortable at the thought of being the person filmed and being ‘entertainment’ for the masses. ‘This week’s condition’.

I also try and think out of myself and maybe I deserve it, maybe I’m getting what’s due.

I’m not perfect, I get things wrong. I do it again and again and that’s why I’m alone and there’s reasons for it in my past.

I try and think what others might say or think about me and that’s tough trying to imagine and think it through.

But.. what to think and how to put all of that together enough to make sense, never mind move on.