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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Formageddon The Sequel

56-2017-01-30-21-26-37There was an original Formageddon (my term for the feeling of gradual apocalypse in my head when faced with questionnaires and forms to complete) back in October 2016 when I was referred for the first autism assessment. But I wasn’t blogging back then, not confident enough to be publicly autistic. Too frightened, too afraid to even mention it without a formal diagnosis. Maybe I’ll write the entire “Formageddon” experience up properly sometime, but, for now, I’m about to plunge into Formageddon The Sequel.

For the original Formageddon I spent a huge amount of time working on something called the RAADS-R (Ritvo Autism Asperger Diagnostic Scale-Revised) and my husband interviewed my mother by phone in order to complete an SCQ (Social Communication Questionnaire). The hospital have never given me scores for these forms, neither were they even mentioned at the assessment, which, after the amount of work I spent completing them and explaining what the real truth was where the questions were badly phrased or imprecise or simply nonsensical, I found rather dismaying.

And now, with the second referral to the second place, I have received a whole load more forms to do. Two pages of “Developmental Questions” that mean we will need to call my mother again (some I know she can’t answer, because we’ve already asked and she doesn’t remember), one called simply the AQ (Autism-spectrum Quotient) which I recognise as the “internet quiz” mentioned in The Discovery, and one called The Cambridge Behaviour Scale, which has 60 questions, many of which will require extra explanation like the RAADS-R did.

I am not filled with joy at the thought of this task. I am exhausted by all this, low on energy, almost beginning to suffer from a sort of “autism fatigue” (I have been obsessively learning everything I can about autism for 5 months now) and I deeply hate dredging up stuff about my childhood – a period of time I’d hoped I’d closed the door on forever when I grew up and left school and home.

I’m also trying to use energy to salvage what I can of my present life. I’m still vaguely trying to save my Open University maths study, which is rapidly falling apart. I want to go running, play my viola, spend time with the animals. Almost anything other than go through another load of Kafkaesque questions that I already know will annoy the hell out of me and trigger all sorts of stuff I really don’t want triggered. And what I desperately need to do, more than anything, is to rest and recuperate, not sit at the computer making myself feel ill.

But the only way I will get another assessment, and maybe a diagnosis, and any closure to this whole diagnostic nightmare, is to go through these damn things, and is to sit, once more, anxious and frustrated, trying to go through this whole process all over again. As seems to be the way, in order to get help I have to make myself feel bad.

Doing it once was stressful enough, doing it again feels even more so, especially when the result might then be another really stressful difficult assessment with an inconclusive ending that leaves me feeling invalidated and suicidal.

This is taking every scrap of my willpower. I feel weary.