Whichever Comes First…

Hell, High Water, Or Something Actually Useful For A Goddamn Change!

As part of my longer and ever more drawn out PIP appeal, I’ve been told it may be helpful if I can get my autism diagnosis finalised. Easier said than done, you may think. My friend, you have NO idea…

First, you need a GP that’s done an adult referral before. My GP, whilst lovely and very supportive, and happy to initially decide to refer me over a year ago, foolishly thought that this would be something that psychiatry would deal with, it being to do with mental health.

Apparently, it turns out, this is laughably wrong.

However psychiatry are very busy and don’t like to talk to GPs or other mortals about their petty foibles, or respond to their letters or phone messages. The locum psychiatrist I was seeing did briefly acknowledge that I was being referred for an autism diagnosis and that this was the correct course. He even decided to refer to it in his next letter as ‘his autism referral’, leading my GP to then blithely assume that psych had taken on the referral and she could forget about it.

I asked occasionally how long it might take to find out what was happening, but was told that the waiting time was very long before anyone heard anything at all. Finding this too vague and frustrating, after having asked one last time for it to be chased up, I tried asking psych at my most recent appointment, who honestly looked at me as if I’d asked how long baby pandas gestate. “You have to ask your GP. It’s up to you to chase it up. There is no need to keep bothering us about it. We have nothing to do with it. Go back to your doctor.” At the end of a very stressful appointment, it was a final piece of oddness.

The wonderful pro bono law centre, not content with the lump of paperwork I had already dumped on them for my PIP appeal, had asked me to go to my GP and ask for a print out of my electronic notes. These are what your doctor writes up each time you go and see them, and it would help with timelines, and additional incidents I might have forgotten. They said that some doctors could be reluctant but you have every right to your own notes, but I was sure I’d have no issue getting mine as my doctor had always been super supportive and kind.

I was therefore quite surprised to find that when I gently mentioned it in passing at the end of my next appointment, my doctor was suddenly very defensive, and said she wasn’t sure if it would be entirely appropriate for me to have all my notes, but she’d review them and let me know. It would probably be better if I just had a condensed version and why did they need then anyway? What were they for? I was a bit thrown at this point, mostly by the fact that they might not be appropriate. What could be in there? I mumbled something about lawyers and not really being sure and left it at that.

Luckily, soon after, my team at the law centre had sent through a clear and friendly letter stating why I was legally entitled to my notes, why I couldn’t be charged for having them printed, and the exact dates needed, which I took into my doctors the next week. I spoke to the nice receptionists instead. “I need my notes printing out, do you think you could sort it out for me?” There was some muttering on the phone and then I waited whilst there was a lot of photocopying. I’ve been to the doctors a quite a bit.

And yes. It turned out that for a year, my autism referral had been nowhere because the locum psychiatrist had used the words ‘my referral’. When my GP had written and chased it up for me at last, they had written back to say that it was nothing to do with them. A year after she had first contacted them. I don’t blame her entirely, but I’d started looking at crowd-funding private diagnoses to get this done, because it matters. And we’ve wasted a year, ffs.

So I took in a print out of how to do a GP referral, because it isn’t obvious and I only found out by mistake. Kind of pointedly, but not really. Next I’m going to take in a print out of the private referrals I also found, and say, fine, put this to the CCG, then. These seem nice. Get this funded for me, because it says they take GP referrals so I know it happens, and I bet this is just the sort of situation it happens in, too.

As a weird sideline, if you do a private referral, you have to look at finding supporting evidence for yourself, which is harder being not only an adult but quite an old one. I do still have a mum, which counts, and they do talk to your parents in some cases, which make sense but feels odd. I don’t have much left from school, but I did join Mensa at 17, and as chance would have it, I saw someone post on twitter about being able to rejoin if you’d ever once been a member. That means they keep your scores on record, so I could maybe get proof of my IQ score from then if I ask nicely.

Turns out, Mensa are very nice, ever so helpful and do keep everything on record. They sent me a letter with my score on, though with a note that I had to ask for further explanation of. Turns out that the Cattell III B test now only goes up to 162, so my score would be recalculated if I ever did it again, but my percentile would stay the same.

I thought I misremembered my score, which was 176. But there you go. It will definitely help towards an autism diagnosis.

My father was so keen for me to do well at IQ tests, and maths, and get into Mensa. I could do everything but the spatial reasoning parts too. No visual mind, you see. But all the verbal and number stuff. But I do know it shows nothing more than the ability to do IQ tests and a low tolerance for people saying “You’d think someone with your supposed intelligence…” or “We know how bright you are..” or “It’s such a shame…”

That’s my school years. The final year of junior school was fine. I had a good teacher, and I could do everything, and I could do it well, and I was leaving so it didn’t matter about other children anyway. I was going to a small (non-fee paying) all girls grammar school, to hopefully be with my peers, and everything would be fine.

Of course, it wasn’t. I didn’t like the school. I didn’t like the ugly brown uniform. I especially didn’t like automatically not being the smartest person in the room all the time. And I didn’t like having an English teacher who teased people and played favourites. I’d had a teacher like that in junior school. That was a big can of nope. I went from being a nice, helpful, shy and swotty type to the back of the class and staring you down and not even being asked for homework kind within a year. But, I also made friends. I did find my peers, and they were quirky, weird, awkward and smart. They were also wicked, and quite often up to no good, to a variety of degrees, especially as we got older. I think the first pregnancy was at 15, although Karen might have sneaked in at 14. Our year was a great disappointment. God, we must have been dreadful. Our teachers were used to teaching nice young ladies Latin and history, and we were crying in assembly because Ian Curtis was dead. They must have been at such a loss. Christ knows what they’d have thought of us having unwired the water heater in the 6th form toilet block and stored a bottle of vodka in it.

This, of course, wasn’t a catholic school. We were CofE. We had some standards. And fewer nuns. But just as much Latin, it seemed, and church so often we seemed to spend half our time trudging in disorganised lines back and forth to stand in drafty pews, hiding behind pillars, mouthing the wrong words to the Credo, and hiding our defaced Hymns: Ancient & Modern from any lurking staff.

The walk from the new school buildings to church (Holy Innocents in Withington) where the old school buildings stood, took us a good half hour; longer, if we dithered. We went past a good record shop and at least one sweet shop. This was in the late 70s and early 80s You’d see John Cooper Clarke hanging around sometimes, like the death of crows. It was a great time to be hanging around.

I did better in the final years. At O’ level my English teacher had given up on some of us, told us we’d fail and put us in another smaller group, as obviously there was the budget for remedial tutoring. Maybe we were supposed to do the CSE papers. We didn’t though. Everyone in that group got at least one A grade. No one failed. I got As in Literature and Language. I like to think, as most of that group did, that I did it out of spite My only regret is that I was told I couldn’t do Latin because ‘it wouldn’t be any use to me’ and I had to do History instead.

I love History now, especially the Victorians. But that teacher sucked all the joy out of it for me and made me hate it. That, and WWII. I did extra Maths in the back of her lesson so I’d have something to do. I got an F in the exam. I’d been scoring over 80% in Latin tests. I still regret the loss of Latin, now, and find uses for it all the time damn it. It’s the building block of our language, and most other ones too. Maybe I’ll find time to do it again one day.

Sixth form was ace. It was the 80s, and we’d gone full punk; our old wizened but terrifying headteacher had retired and she’d been replaced by a lugubrious man who was much easier for us to intimidate. Our school was no longer a grammar school, thanks to dear old Maggie, and the year below us would be the last sixth form. Might as well go out full Fin de Siècle and let loose, and so we lobbied for the sixth form to no longer have to wear uniform. We found we could lobby for many things, actually. We were punk as fuck. We were beautiful Blitz kids. We went to the pub at lunchtime – but were careful it was a different one to the teachers. We spent a lot of time in the headmaster’s office, although a fair percentage of it was denying things. I wish I could remember what it was that we all lined up to admit to, in an annoyingly Spartacus-like fashion. I do remember he had a face that was very easy to caricature, though…

It wasn’t all sailing, however. I started out doing Human Biology AO’ level, Combined Maths, Art and General Studies at A’ level. Within a year I’d had two months off and was just doing Art and General Studies. Mmm. Nice. I highly recommend it.

I did pass my Human Biology in the end, but I let the Maths go. I had wanted to do Pure Maths, but school only offered combined Pure and Applied, and the first year of Applied was too much, on top of other studies as well. I had my first real meltdown, and had to take time off after loosing control and trashing my room at home. I remember my mum gave me half a Valium and told me everything would be fine, and in the end, it was.

I did do one extra exam that final year by mistake, though. School put my name down in error for the Universities Test in English, and no one noticed until the day of the actual exam. They asked me if I wanted to do it or not and I thought, well, I’ve got nowhere else to be, it gets me out of sitting in assembly, why the fuck not? It was absolutely no use to me too. It was for people going the Oxbridge route who were science majors to prove their English language skills, as there was no real English language A’ level equivalent at the time.

It was such a joy to do. Part of it involved extrapolating the meaning of ephemeral from a text and explaining your reasoning. When we got the results back and I got a 1, one girl would not speak to me because she only got a 2, and the exam didn’t matter to me. There was nothing I could say to her to make it right either.

We put our children through hell for a few points on a scale, during he tiniest window of their lives. I couldn’t find that certificate or even explain what the test was or why I took it, today.

And now, I’m no further towards getting an autism diagnosis or a PIP review. But I know a damn sight more about how to get both. And I will be a hop and a jump further by the end of the month, come hell or high water.

Whichever comes first, really.