Still Complicated

After my autism diagnosis I was fortunate enough to be given two follow up appointments with the assessor, mainly, I think, to discuss how I felt about being diagnosed autistic once I’d had a little time to process it, and also to discuss the report and finalise paperwork and so on.

The first of those appointments was in April 2017, and I know that by that stage I’d already learnt quite a lot more than I’d known in February. Having a formal diagnosis finally gave me the confidence I needed to start interacting with other autistic people, and I was starting to discover that some of these people were more like me and some less like me. I slowly started to try to work out where I fitted into the autistic community and what role, if any, I might play in it in the future.

There were things that were obvious from the off. I’m not a computers sort of autistic, nor a gamer, nor do I seek particular solace in nature. Neither am I a hyperempath, nor particularly introverted, nor what most people would regard as shy! I can sometimes be quite extroverted, I have to work hard to try to interpret the feelings of others so as to try not to cause offence, I like engines and machines and cars and trucks and planes (and yes, trains too), but even syncing my phone to the computer or trying to do anything new with this blog can reduce me to tears.

But there were other things too. And, as we started to unpick all the features of me that were clearly related to me being autistic, we started to notice that there were quite a few things that weren’t explained by autism. And as I read more about neurodiversity in general and started to interact with people who were neurodivergent in many different ways and not necessarily autistic, something else started to emerge as a possible contender for consideration.

It was as though somebody had laid a whole load of objects on a table, each object representing a trait (this trait might be a “skill” or it might be a “difficulty”). As I’ve steadily been diagnosed with different conditions over the decades, these objects have been removed from the table and put into a bag labelled with the name of that diagnosis. When I was diagnosed with anxiety and depression a couple of decades back a few objects were removed from the table, put into a bag, and taken off to be given an antidepressant pill and some CBT. But there were still rather a lot of things there. The bipolar disorder diagnosis nearly a decade ago removed quite a lot more objects from the table and quite a lot more of my life was explained, but again there were still an awful lot of my “eccentric” traits left behind.

Then autism arrived. And a HUGE number of objects were put into a brand new bag with “autism” written on it. I took the bag and started to work through the contents and to try to deal with them as appropriate (e.g. there was an object that told me fluorescent lights made me ill, so I wore sunglasses and I now ask people to turn off lights when I can). Learning to understand all these traits, sticking them all together in the “autism bag” was revelatory and changed my life massively.

However, there were still things on the table. And once the autism traits had all been removed, it was clear that there was another outstanding diagnosis that would explain quite a lot more of my behaviour as both a child and during adulthood. It seemed unlikely that I really was a highly spontaneous autistic who just randomly did things out of routine sometimes or that the times when I missed details and struggled with mundane repetitive tasks were down to autism – and these traits were having a significant and often detrimental effect on my life. Chatting to other autistics online it became obvious that the mixture of traits I had were the same as those who were identified or diagnosed as being autistic but ALSO having ADHD.

I mentioned this to the autism assessor at my first follow up in April. She said that she was unable to diagnose ADHD because it fell outside her remit. She was absolutely totally certain that ADHD was not an alternative to the autism diagnosis because she was so totally certain that I was autistic, but she didn’t rule out ADHD as an additional condition that would be worth exploring elsewhere.

So we made an appointment with my GP, which, owing to terribly long waiting lists and difficulty booking appointments, entailed a 6-week wait. We used the precious GP appointment to briefly outline the results of the autism assessment and to broach the idea of ADHD. My GP referred us back to the mental health services, who were the people who were the ones to do ADHD assessments. And we settled down to wait, again.

Forms arrived a month or so later. I was away at the time so we didn’t manage to complete them straight away, however, eventually, in September, we completed Formageddon Round 3 – another set of questionnaires for me, a set for my spouse, and a set for my mother. I might write the process up in more detail at some point, but not today.

And so, at the start of October, I was given an appointment at the mental health services for what we believed would be a relatively straightforward ADHD assessment.

It turned out a bit differently from what we expected. I’m not going to go into details right now, because my head is still doing a lot of processing, but suffice to say, things changed from what we were expecting (the time and personnel of the appointment were both changed just beforehand). It turned out that I was seeing my old psychiatrist from many years back, and, of course (though I already knew this) it was in the mental health centre I’d left many years ago and had been to rather a lot at a not very happy time of my life.

The triggering effect of being back in the place, with the person, coupled with the fact that I was, on this occasion, again deemed “too complicated” (warning for picture of self-injury if you click the link), was nearly disastrous. This time, however, unlike the occasion in November 2016, my spouse spotted the signs and suggested I take a break. I spent most of the appointment outside, rocking on the pavement and communing with a pot plant with a small white flower.

When I went back in for the last few minutes of the appointment my spouse had clearly explained a lot, and my autism report, which my GP had sent with the referral, had finally been read. It had also become obvious that there was something of a vacuum as far as finding anybody who understood both neurodiversity and mental health issues, and the ways in which they interacted, well enough to give me (an autistic person with bipolar disorder) an ADHD assessment. My psychiatrist, however, did think that there was someone who could be asked to help and that it was worth a try.

I’m not sure I was wildly optimistic at this stage. It seemed like the process of finding people who could actually work out what was going on in my head and help me put the objects from the table into bags and then deal with the contents of those bags, was just an uphill struggle. I pondered whether to just give up and go home and drink stronger drink, but in the end I was curious enough to wait to see what happened next.

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Flippant Suggestion

Very early on in the process of discovering I was autistic, sometime in the autumn of 2016, my husband and I had a brief and frivolous discussion. We spent a short while pondering what explanations would have been proposed for my behaviour as a child if I’d grown up in a different decade?

My behaviour at primary school was clearly somewhat different from that of most kids. I spent a lot of time on report, I got into trouble a lot, and I found most of the experience of going to school as a young child incredibly difficult. I evidently had some academic ability and I was a prolific reader, and I sang and played recorders and clarinet in school concerts, but I fell a long way short when it came to actually completing written work, even maths, which I struggled at until my mid-teens (this will surprise people who know me today), and my behaviour was way off what was expected.

At the time, the school did what they could, as I described in Head’s Office, and tried to find out why I wasn’t behaving “correctly” or achieving what I should have been in my written work. However, because it was the 1970s and they were primary school teachers in an ordinary primary school, no conclusion was ever reached, and I just eventually muddled through somehow, using my learning ability to adapt as best I could and to try to work out what I should actually do.

So, we knew what had happened in my real life, in the life where I was a primary school student in the 1970s. And, as it became obvious that I was autistic and that I had shown a large number of autistic traits right from being a baby, and as we discovered that my nursery teacher had remarked on my behaviour when I was 3, and my primary teacher had done likewise when I was 4, we concluded that it was likely I would have been given an autism diagnosis as a young child had I been 40 years younger. This was eventually confirmed by the person who did my autism assessment – she was clear that there was enough information about the early part of my life that I would, in the present day, have been diagnosed at around 4 years old, as I described in Circles.

However, that left quite a large gap. 40 years is a long time. Was there any sort of intermediate stage? What would have been the analysis of my school behaviour if I’d been, say 20 years younger? A halfway point between the 1970s and the 2010s? What would have happened to me if I’d been a child in the 1990s? Obviously, things would have moved on somewhat from the 1970s. I would still have been very unlikely to be identified as autistic, but we speculated, very briefly and slightly flippantly, what MIGHT have happened if I’d shown the same behavioural traits that I did in the 1970s but viewed through the eyes of 1990s adults.

We were, of course, adults ourselves in the 1990s, though mainly students and with no dealings with small children of any description. I eventually became a schoolteacher, but that was towards the end of the decade and I was a secondary teacher – I only gained limited experience (from occasional supply work) of primary age children and how people reacted to them in the early 2000s. But we did watch the news. We did follow current affairs. And, having the sort of memory that we both have, we both clearly remember stories about the behaviour of small children and the rise of a particular diagnosis during the 1990s.

“I might have ended up as one of those ‘Ritalin kids,’” I quipped to my husband! We both laughed! “Yes, me too!” he responded. We laughed again. The throwaway remark didn’t spark any further discussion. We were only bantering, wondering, throwing ideas around, and eventually we carried on with the serious business of gathering information for an autism assessment.

I didn’t think about that conversation again for a long time. The question of what would have happened to me as a child in the 1990s was just a little game of “What If?” and since we knew what HAD happened in the 1970s and we were now certain that we had found that my being autistic was the reason for my behaviour as a child, we had no reason to pursue anything else further. We had the answer – I was autistic and we were absolutely focused on getting me the formal autism diagnosis that I so much needed, and, at the time I spent most of my life buried in autism books and blogs – like a true autistic with a new shiny interest I really didn’t care much to think about anything else in life except autism!

I was also going through that really “heady” early phase of discovery, where, after decades, I was suddenly discovering so many reasons for so many things that had always been part of my life. I was reading whole books in one sitting, taking in vast amounts of information, and learning as much as I could about autism and being autistic and the ways in which being autistic influenced my life. I was still in that initial state of shock, excitement, relief, and so on and my mind was going at a million miles an hour.

It wasn’t until I finally received my autism diagnosis at the end of February 2017 that we finally stopped gathering information about my autistic traits and I started to relax a bit and gained the confidence to engage properly with the online autistic community and to start to learn about the whole area of neurodiversity and how it impacted on my life. Getting my diagnosis freed me to start looking outwards, and forwards, rather than backwards and inwards. I also started trying to rebuild my life and to try to find solutions for some of the difficulties that I was still experiencing.

And, in the usual way, I did so by research and by reading and by learning.

There was still a lot to learn!

Head’s Office

09-2016-12-15-16-03-53I was in trouble. Yet again I was in the Headmaster’s office. I can’t remember what I’d done, but it must have been something pretty bad because I was fairly certain I would be caned.

My misdemeanours usually came in two forms. The first – violent outbursts, hitting out, swearing, getting into altercations with other children. The second – failure to complete work, to present work sufficiently neatly, to do what I was supposed to be doing. I don’t know what I’d done on this particular occasion, but after weeks on report I was fairly certain I’d reached the end of the line and I stood there in my grey uniform with the chewed tie, waiting for the worst.

The Headmaster started to question me, which I found confusing. He asked me whether I had breakfast at home and what I’d had to eat this morning. I always had breakfast – my parents wouldn’t allow me to go to school without it – and it would have been cereal and toast, because it was always cereal and toast on a school morning. I told him this. He then went on to ask if I had my own bedroom at home. I told him I did. And he asked me what time I went to bed. I can’t remember what time it was, but I told him my bedtime, which was the same every night, and his response, which I can still hear in my head, was “That’s good and early.”

Then he started to question me about my parents. Were they good to me? I said they were OK, though they always made me go to bed earlier than I wanted. Did they ever hit me? I told him that they didn’t, but when I’d been naughty they lectured me on why what I’d done was naughty. Did they ever do anything that made me uncomfortable? I couldn’t think of anything. Did they ever touch me anywhere that felt wrong? I assured him that they didn’t.

I can’t remember much more than that (it was over 36 years ago after all), but I remember answering these slightly odd questions, wondering why he was asking me all these strange things and not just getting on with the caning thing. I remember eyeing the cane in the corner of the room, wondering whether it would hurt more or less than the ruler that another teacher had recently hit me with as a punishment for untidy work. I remember wondering how the cane worked and whether it would be on my hand, like the ruler had been, my bare legs, or through my skirt on my bottom.

I never found out. The caning never came. The Headmaster looked at me and said to me, very very seriously, that if there was anything, anything at all, that upset me at home, that I should come and tell him. And that it would be OK. And I could tell him anything. I was still very confused about this, because I couldn’t think of anything that I needed to tell him apart from some stuff about having to eat vegetables and I didn’t think he’d be interested in that. I assured him that I would tell him the minute anything bad happened. With this assurance, he dismissed me from his office and sent me back to the classroom.

I have never forgotten this incident. All my life I’ve known that I was very very naughty at primary school, constantly on report, and that I sailed so close to the wind that I was nearly caned and had this bizarre interview about my home circumstances. I put the naughtiness down to boredom, to being bullied, and to the general wilfulness that characterised my early school career. I realised that the Headmaster knew that there was something not quite right and, as I grew into adulthood, it became apparent to me that he was trying to discover the cause of my behaviour and was investigating the possibility that I was being neglected or abused at home.

But he never caned me. And he never did get to the bottom of my extreme behaviour or my problems in the classroom. But he tried. And he recognised that I was in considerable distress and knew that there was something going on. And, to his credit, he did his best to find out what.

At the end of the 1970s, an ordinary primary school headmaster in the north of England would never have guessed that the usually chatty wilful little girl who did well at tests, but whose behaviour was often challenging, was autistic. He’d never have known that she was constantly overloaded by the noise of small children surrounding her. He’d never have known that she didn’t complete projects because she didn’t really know what to do or how to go about it.

And the irony is that the little girl didn’t know these things either. She wasn’t making much effort to learn sums or spellings while at school because those things came naturally to her, but she was making an absolutely huge effort to try to keep the bullying at bay, to make a few friends, to work out how she was supposed to behave to fit in. She was processing massive amounts of information, building a mask that would cover her condition for decades to come, and working out what she had to do to survive in a confusing world. But she was only a small girl, and she didn’t know any of this. She just assumed it was the same for everybody because that was all she knew.

But now, decades later, she has finally discovered what was going on. And she’s thought of the Headmaster and how he knew there was something, but couldn’t work out what. And he tried, but, like her, he had no chance of finding the answer back then, because girls like her weren’t given labels or support and their difficulties weren’t recognised.

But he never did cane her. For which she was very grateful.

He did, however, make her stand up in assembly a few months later – so the whole school could applaud her for having the highest grade in the school on a musical instrument.

She must have been one of his more confusing and baffling pupils!