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.

Clarification

34-2016-12-29-19-41-46So, my husband returned home last night and filled me in as fully as he could about what he’d learnt from his conversation with the triage service. I’d spent the day feeling pretty rough, and I realised that the blog posts from this week might be rather muddled – I’ve found at least one instance of my using the wrong tense, which is not uncommon when I write! I don’t think in word tenses, but time is positional on the “map” (I’ll call it a map for now, but it’s actually not quite like that) in my head and writing things up using tenses is a matter of translating positions to words. I often don’t get it right first time and usually have to proof-read quite heavily.

Anyway, we are now absolutely confident that the triage service are doing their very best for us and coping with some rather difficult conditions in our county’s adult autism assessment service. I’m not going to go into too much detail, but if I say that the picture of the plants growing through the wall at the start of Too Articulate is an accurate visual metaphor for the attention given to adult autism at this particular hospital, then maybe you’ll understand what I mean.

We have also looked up the relevant NICE (National Institute for Health and Care Excellence) guidelines on diagnosing adults with Autism Spectrum Disorder and have discovered that they say the following:

In all settings, take into account the physical environment in which adults with autism are assessed, supported and cared for, including any factors that may trigger challenging behaviour. If necessary make adjustments or adaptations to the:
• amount of personal space given (at least an arm’s length)
• setting using visual supports (for example, use labels with words or symbols to provide visual cues about expected behaviour)
• colour of walls and furnishings (avoid patterns and use low-arousal colours such as cream)
• lighting (reduce fluorescent lighting, use blackout curtains or advise use of dark glasses or increase natural light)
• noise levels (reduce external sounds or advise use of earplugs or ear defenders).

Where it is not possible to adjust or adapt the environment, consider varying the duration or nature of any assessment or intervention (including taking regular breaks) to limit the negative impact of the environment.

I sit here and think of the environment I experienced at the first appointment, the tiny room, the patterned chairs, the orange chairs, the fluorescent lighting, the loudness of the assessor, and it’s no wonder that, when faced with those conditions, then asked about my childhood (a time I generally try not to think about too much because it wasn’t all that much fun), and my history of nervous breakdowns and suicide attempts, and then told that I was too articulate to be consistent with a diagnosis of an Autism Spectrum Condition, I had a massive meltdown. Every bit of me was stretched to the absolute limit and the fuse blew.

Furthermore, when I was in meltdown the fluorescent lights continued to shine, the woman continued to talk, and there was no opportunity for me to get any peace and quiet to recover.

We are also learning fast. We’ve discovered the difference between a PCT (Primary Care Trust – they ceased to exist in 2013) and a CCG (Clinical Commissioning Group – the modern version), and we are now confident that the problem lies with the CCG. We’re trying to get everything as straight as we can, while also trying to survive (I’m still really not that well and keep losing words and my husband is on the edge of his coping abilities, afraid of the telephone and forcing himself to make complicated difficult telephone calls, and trying to keep his employment stable) and we’re trying to learn about an area that’s pretty much completely new to both of us.

Apparently the idea is that we go to the medics for help, but thus far we’re finding out that it is very much the other way round!

We have also discovered that the advice we were given about going back to the GP and getting a referral to CMHT (Community Mental Health Team) for some non autistic mental health condition would have been an extremely bad idea, because not only would it be unsuitable treatment for me medically, but had I been placed under the care of another team for another condition, I would then have had to wait for discharge from that team in order to be assessed for autism – so that would have made matters considerably worse and more complicated, not better.

And as for sending an emetophobic autistic with serious sensory issues to an A&E department – it doesn’t bear thinking about. I’m absolutely terrified of such places and always have been – I don’t even watch Casualty on the telly because I know that it frightens me and triggers me. The chances of me ever going to an A&E department unless I was actually unconscious are virtually nil.

But they were the only two options I was given to get any sort of care at all. So I came home and blogged and wrote poems and drank large quantities of Pinot Grigio because that was all there was.

I expect things will become even clearer as time goes on, and we’re now waiting on the second referral and probably another lot of forms to complete. The first referral is still open, and if the psychiatrist miraculously gets better and returns to the hospital then I’ll see him. If not, I’m now under referral to another centre and having to go through the whole business all over again.

For the moment, we’re sitting tight and doing what we can as far as getting me diagnosed is concerned. Our immediate concern is simply to get me sorted and start applying for any help that might be available and to close the “autism diagnosis pending” tab in my head so I can start to recover from this current episode of burnout properly, move on with my life, and become somewhat less of a burden to my husband who is managing amazingly, but cannot do this for ever – he will run out of energy at some point.

However, we are gathering information as we go. Once we are through with this we will compile it into some sort of dossier of “robust feedback” and send copies to the relevant agencies who might learn something from our experiences. A few people have told us that complaining is hard work and gets nowhere. We are not trying to “complain” (although we feel very much like shouting like crazy about how unfair it all feels right now), nor would we seek compensation or anything because we simply don’t think in that way. But it might just be that if there is a critical mass of feedback received then the system might, in some small way (even if they just get a better room with plain chairs and low lighting and train the assessor about autistics and clocks) improve, and that tiny increment of improvement might actually help someone in future. What we’d hope to do is persuade them to make the system better so that someone else doesn’t go through what I’ve had to. Although life has, in many ways, dealt us a pretty bad hand, we’ve also been privileged enough to get educated and have abilities to write about our experiences, and with that privilege comes responsibility to use it. That’s the way we think, anyway.

And discovering what a fiasco the whole thing is and writing it all up has actually helped me considerably. I’m no longer doubting my sanity in the way that I was now that I know there’s a problem with the system. I know I’m autistic – there’s absolutely no question about it – the further I get with the research, the more I remember about my life, the more I observe the way I behave now and notice the impairments I clearly have and just how random my skills are, the more obvious it becomes. I came home from the assessment thinking that I was going mad and had got it all wrong, but now I’m getting the measure of what’s going on in the system I’m regaining my sanity somewhat (or, what there ever was of it anyway)!

If this ever does get converted into a book, the diagnosis chapter might be rather lengthy. I was originally thinking it might take one blog post, but it’s not turning out that way!