Whatever You Call It

So, the dreaded “Autism whatever-you-call-it Day” has arrived. The day that, in theory, should be about autistic people and their needs and so on, but, from what I’ve gathered so far, seems not quite to work out that way (remember, I’m still really new to all this, and still learning, so I’m not going to go into detail about some of the more frightening aspects of the “light it up blue” campaign (please don’t light things up blue – many autistic people hate it, as they also hate the “puzzle piece” symbol), because I need to do further research and thinking before I’m confident enough to discuss some of the things I’ve been reading over the last few months – as far as the “politics” of autism are concerned, I’m very much still at the “listen and learn” stage).

However, as a newly-fledged autistic blogger, I eventually succumbed to the need to make some sort of statement about this day/week/month or whatever. I believe it was originally called Autism Awareness (and was then taken over by a particular organisation), but that the autistic community are now pushing it towards Autism Acceptance, and I’ve even seen several suggestions that it should be called Autism Appreciation! So, I’m going to look at awareness, acceptance, and appreciation, and consider just a few of the things I’d like to see more (or maybe less) of, as far as autism is concerned. This isn’t an exhaustive list, nor am I claiming to act on anyone else’s behalf, and where I’ve mentioned “most autistic people” I am acting, at this stage, only on the impressions I’ve received in the short time I’ve been part of the autistic community. I’m also conscious that the style is a bit rough, and it makes some generalisations for which I don’t currently have “hard” evidence, and that it also addresses non-autistic people rather heavily (if there is any element of “patronising” then it really isn’t intended, though I’m worried it might come over that way). Trying to make the thoughts into words is sometimes a little tricky – I am still very much a novice at this.

Awareness

1. I’d like everyone to be aware, really properly aware, that most autistic people are ADULTS. Autism is a lifelong condition and it doesn’t magically stop when someone reaches a significant birthday. Yet the mainstream focus on autism seems to be almost universally geared towards children – many autistic adults are unsupported, have poor access to diagnostic facilities, and are finding life tough. Many of us went through years of struggles before we even knew we were autistic and are burnt out and traumatised by the experience, yet when we search for information we are faced with a barrage of articles about children. This is not to downplay the importance of care for autistic children and the fantastic job that many parents do in trying to understand and care for their kids, but today’s autistic children will become tomorrow’s autistic adults – and once they’re not cute any more or their parents are no longer around to look after them they will very likely continue to need support.

2. I’d like people to be aware that most autistic people prefer to be referred to as “autistic”, not as a “person with autism” (though not all, and it’s always wise to ask people how they like to identify themselves because it’s their choice). My own thought is that “With autism” implies that some version of the person exists “without autism”. But autism is not an “add-on” – you can’t remove it somehow – the only way to make an autistic person “non-autistic” is to murder them, and I’m seriously not in favour of that approach for very obvious reasons! I’d also like people to be aware that many autistic people really really hate “functioning labels”. I have a whole blog post to write, one day, about the use of “high-functioning”, “low-functioning”, “severe”, and “mild” and how utterly inappropriate these terms are to describe an autistic person – autism is a condition that presents in so many different ways in such a variety of people that dividing the autistic population up based on some arbitrary criteria and how they are perceived in the non-autistic world is both nonsensical, and, to many, deeply offensive.

3. I’d really really like ALL health professionals to be more aware of autism and the needs of autistic people. Really aware. So that nobody will ever show up at a GP surgery and be told they “can’t be autistic because they make eye contact” or “there’s no point diagnosing adults because there’s no support”. So that nobody will have to spend years fighting for their daughter to be diagnosed, and go through multiple misdiagnoses because the professionals don’t know what to look for. I spent 20 years in the mental health system – not one of the professionals I saw suggested that I might be autistic – it was left to some friends I met by accident through a couple of my interests to point it out to me, and I then had to battle through a diagnostic process which nearly killed me, and where I encountered a psychologist who clearly knew very little about autistic people, how to treat them, or what some of the characteristics of autism even are. Awareness of autism in the medical profession is still, at best, patchy.

Acceptance

1. Fully accepting autistic people and our ways is, for many people, going to be challenging, and those non-autistics (also called allistics) who lead the way as allies to their autistic friends and family will, to a significant extent, have to fight against their OWN neurologies. I know quite a lot about fighting one’s neurology – I’ve spent 40 years doing it – it isn’t easy. Worrying about “how things look” or “what people will think” has, sometimes, to be ditched when dealing with autistic people. Picture yourself in this situation: You’ve gone out to coffee with a hungry friend – that friend approaches the counter in dark sunglasses and orders their regular coffee and snack without looking at the barista, the snack is sold out, your friend starts to sweat and gets anxious and walks away from the counter, leaving you to choose an alternative snack, pay the bill, and deal with the barista. You get the coffee, take it over to the table, where your friend is sitting, rocking back and forth, and scrolling frantically through their phone. People on the other side of the shop are looking at your friend, who doesn’t thank you for the coffee and barely acknowledges your arrival. A gang of kids comes in and starts laughing at the two of you, your friend starts to wave their hands around, which makes you even more conspicuous, and then screams hysterically, jumps out of their seat, and runs out of the shop and up the road in tears, leaving you to sort out the resulting chaos. If you’re still cool at that point and totally accept that your friend’s behaviour is entirely beyond their control and is the result of their being autistic and you totally accept it all then I think you’re wonderful! And you’ve just had coffee with me on one of the days where I’ve made myself cope in the outside world when I needed to be somewhere, when the option just to curl up and stay at home wasn’t available.

2. Accepting autistic people doesn’t just mean accepting the visible either. I am one of those autistic people who visibly stims. I always have to some extent, and now I know how good for me it is I control it the absolute minimum possible – it’s easy to see. I wasn’t asked about repetitive movements at my assessment because there was no need – it was obvious! With me it’s a case of “love me, love my stimming” – simples!!! However, there are many autistic people who don’t visibly stim, who might be waggling their toes inside their shoes, or subtly pressing parts of themselves against something. There will be nothing to see, but they might be finding it really difficult to follow a conversation or cope with being downwind of someone wearing strong perfume. They might have changed their clothes 20 times before leaving home because they were having a bad sensory day. They might have spent the previous night in tears because their favourite blanket was in the washing machine or the shop had run out of the only thing they could possibly eat for breakfast. They might, themselves, be anxious about asking for adaptions and not be quite as brazen as I often am about such things (sometimes I’m very brazen, other times I find it more difficult). Accepting the invisible can be particularly challenging for many people, but to fully accept every autistic person it is essential – the words “but you don’t look autistic” can, I’ve read so many times, feel invalidating and hurtful. Personally, I’ve never had those words said to me (see the start of this paragraph, which probably explains why), but not every autistic person is like me, and questioning somebody’s identity based upon some kind of stereotype of what autistic people are supposed to “look like” is really not cool. Autistic people are varied in their looks and behaviour, just like everybody else!

3. Because autistic people have different ways of perceiving the world and quickly become overloaded, especially in certain environments and around people, we need a LOT of downtime. Accepting that your autistic friend is still your friend and still values you even though they’ve cancelled your meet-up yet again is tough, but is part of the acceptance. Sometimes we really do need to be alone and stare at the wall – maybe for several days. We often need to do things that seem, from an allistic, social, point of view, rude. I am much more likely to be able to cope with having dinner with you if my phone is on the table next to me and I take breaks from talking to you to play a game or retreat into cyberspace – this, I understand, is regarded as rude in many social circles. It is not rude – it is survival, it is coping with overload. Furthermore, for those of us who are sporadically nonverbal and have times when we can’t speak, such devices are our communication tools, and, often, knowing they are there and we can resort to typed communication provides us with sufficient security that we can actually get through a meal and contribute to the conversation because our anxiety levels are lower. Next time you see a child with an iPad in a restaurant, don’t automatically assume that it’s an example of “bad parenting” or similar – it might be the difference between that family being able to go out to lunch or not. We are not necessarily great communicators – we are unlikely to phone you spontaneously, or be very good at getting back to you quickly (sometimes sending an e-mail takes a lot of effort) and we might miss subtle allusions and misunderstand social codes and we often cope rather better if you talk to us in clear, uncluttered language, but we are nearly always doing the best we can – this means we can get exhausted very very quickly. Many of us struggle to keep our homes tidy and clean – if you visit, do not judge us by conventional standards, because we can’t always keep up in the way that might be expected. “Pushing on through” when we are finding things difficult is often, for us, NOT the answer, and might actively damage us (Note: I am aware that some of this doesn’t just apply to autistic people, and there are many others with other conditions who have similar struggles). We can’t operate with the same set of conventions that many other people can because we’re working on a different system with different energy levels.

Appreciation

1. Although we do need time and space, many autistic people really really want to participate in life. If you want to appreciate our enthusiasm and skills, then bear with us and KEEP INVITING US! Sometimes we will have the energy, and we will want to spend time with you and enjoy the things we have in common with you. Sometimes, even if we can’t make it, we will really value the invitation. Many of us have a lot to offer, and we’re happy to share our time and skills with you, even though we’re not often the greatest publicists on the planet. To fully appreciate autistic people takes time, and possibly a little more effort than is usual (believe me, we’ll be making as much effort as we possibly can – it goes both ways – many of us are doing our absolute damndest to fit into the world, even though it is incredibly difficult). Many autistic people have a great deal of knowledge about a great many things – we’re often prolific learners and when we’re interested in something, we can become VERY interested in it indeed – some autistic people can make great careers out of their interests and appreciating talents is just as important as supporting through the difficult bits. (I realise I’m using “we” here, without having consulted with any other person, but I hope you’ll forgive the generalisation based only on my observations thus far – I do make an attempt, from time to time, not to make all of this exclusively about me, because, lovely as it is to be appreciated, I’d really like all other autistic people to enjoy appreciation too). Don’t give up on autistic people because we need a bit of extra consideration – there are autistic people who never speak but write books, and there are autistic speakers who can present brilliantly but miss out on the opportunities for networking in the bar afterwards, and so on. Being autistic is an important part of an autistic person’s identity, yes, but so, often, is being an artist, musician, scientist, poet, writer, sportsperson, someone who cares for animals, and all manner of other things. Appreciate all this stuff for its own sake too! Never underestimate what is going on in our heads, even when it’s not immediately apparent from the outside.

2. If an autistic person shows up at your party, or comes to your event, or spends time with you, then appreciate this – they are likely to have put in a huge amount more effort to have shown up than most other people will have. This statement is in NO WAY intended to induce any sort of guilt or to stop you sending invitations (see above), but just to make you aware that what you see on the surface might not be the full story. I am currently at the stage where, in order to recover from any major time out in the world, I need two full days blank in my schedule where I am mainly alone, mainly in a dimly lit place, and free to stim for hours or watch the same film on repeat, or similar. But most people who see me out in the world will not know that. Most people who watched me play in a concert the other night will be unaware that I spent two full days with a blank diary earlier in the week in order to prepare and that I now have two further blank days in order to recover enough energy for next week’s commitments. Being autistic means, as I’ve already mentioned, getting more tired than most people who do the same stuff. Appreciating the effort made might often mean just being aware of that effort, and, when somebody turns down an offer of a post-gig drink, for example, don’t argue with them or push them, don’t feel slighted when they need to take time out or sit on their own during a tea break, or can’t contribute in quite the same way as everybody else – appreciate the effort that has gone into being there at all, and know that you are the recipient of massive amounts of energy because you, or your event, or whatever, is appreciated and valued by them.

3. And, lastly, appreciate what autistic people themselves have to say. There are lots of us around – we’re everywhere, and many of us have plenty to say for ourselves (as you’ve probably noticed) in the form of books, blogs, and so on. As I’ve already mentioned, we’re a varied bunch, and our opinions on things differ depending upon circumstances, background, and so on. We’re not some sort of bunch of “autistic clones” who are all exactly the same as each other, but we do, often, understand each other in ways that, perhaps, allistic people don’t – even the most highly qualified allistic autism researchers and those who care for autistic people do not experience things from the inside, although many of them do make a great contribution, but in a different way. If you want to know what it’s actually like to be autistic, then asking people who are autistic is, perhaps, a good place to start. Many of us are glad to be asked (though we might take a little time to respond, and, remember, our ways of communicating responses might be a little unconventional). I am, of course, all in favour of autistic appreciation – any time anybody wants to appreciate this particular autistic (and their blog), you’d be very welcome. Appreciation in the form of good lattes, wine, cheese, nice soap, and an endless supply of fuzzy tangles is particularly welcome!!! 😉

As to lighting anything up blue, please don’t. There are various other campaigns such as “light it up gold”, “red instead”, and even “tone it down taupe”, which are, I believe, initiated by the autistic community. I have gone for the colour orange at the top of this post – orange is reasonably close to red, gold, and taupe, and is also the complete opposite to blue on the colour wheel. Thought that might be appropriate!

My “awareness, acceptance, appreciation” duties now discharged as best I can on this day, this blog will now continue, quietly, to do whatever it does in its own way.

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Evolving Understanding

Now that I come to see it written down, that title seems really really strange. But I can’t think of a better one, so it’ll have to do. What I’m trying to say is really something along the lines of “I want to write about how my diagnoses (particularly with regard to mental health and neurology) and my understanding of those diagnoses and ability to discuss them has evolved over time” but that’s way too long for a blog title!

In addition to being autistic, I also have bipolar disorder (bipolar II to be precise – which means that my manic episodes are actually called hypomanic episodes and are somewhat more moderate than the full mania of bipolar I, but that my depressive episodes are generally longer and more extreme than the depressive episodes usually associated with bipolar I (there are also other forms of bipolar disorder, including cyclothymia (often called rapid-cycling) and, I believe, something about mixed states or not specified – my knowledge on current bipolar disorder designations is a bit rusty as I’ve not done much work on it recently and I don’t have the time to do a research project on it today)).

I was formally diagnosed with bipolar disorder in 2010, although I had evidently been self-diagnosed for some time before that. I briefly wrote about my experiences back in July 2009, and I was clearly already comfortable with the self-attributed label at that time, so I suspect I had been self-diagnosed for some while before then – I really can’t remember. I have openly and comfortably spoken to anyone who cares to listen about bipolar disorder, depression, and anxiety for many years now, and I’m currently learning to do the same regarding autism. As it’s bipolar day today I had wondered whether simply to share my previous writing about my experiences with bipolar disorder, but when I looked up those writings my rough style and my evident lack of knowledge were just a bit too grating, so I decided to write this post instead.

And so we come to the notion of evolving understanding. It is clear from my 2009 writing that my own understanding of my mental health and neurology has evolved massively in the last 8 years. It is also clear that the understanding of autism in general has evolved massively over the last 8 years. And it is also clear that some of the issues in my life that I attributed to bipolar disorder back in 2009 were obviously related to my being autistic, as this quote, from 2009, shows:

“Every so often I get stressed, sometimes for no apparent reason. And sometimes, as happened when the treadmill broke recently (it was really just the last straw), I go over the edge. I cry uncontrollably, I am unable to focus on anything and incapable of making even simple decisions. Work becomes impossible. I feel terribly guilty. Eating normally becomes impossible. My senses go haywire. I shake uncontrollably. My legs HURT. And the world becomes a very frightening place, full of bright lights and loud noises, where even little old ladies with sticks seem to move at the speed of light. It is worse in the mornings. And, as I am now discovering, rather hard to write down in a way that makes any sense.”

Bipolar disorder, particularly bipolar II, and particularly in those who are AFAB (Assigned Female At Birth), has traditionally been a common misdiagnosis in the days when the understanding of autism was poorer than it is today. I did wonder, when I received my autism diagnosis, whether my bipolar disorder diagnosis would be removed, because so many of the ways the two conditions present and interact can be similar. However, bipolar disorder is also a common comorbid condition with autism, and the prevalence of bipolar disorder in the autistic population is far higher than in the population as a whole. During my assessment there was a long discussion about my mental health and about how bipolar disorder and autism interacted in my life, and I’ve also mentioned this interaction in the post about Different Language. The conclusion was reached that bipolar disorder is, for me, a comorbid condition alongside autism, and the two have to be considered together.

It’s also obvious now, from the quote above, just how many of the characteristics I ascribed entirely to bipolar disorder in 2009 were actually part of my being autistic (“My senses go haywire” and the subsequent descriptions of sensory problems associated with light and sound are obviously autistic characteristics, in hindsight). For the best part of a decade, bipolar disorder was blamed for pretty much everything that was “wrong” with me, and for a decade or so before that it was simply “anxiety and depression”. As life has progressed I’ve steadily acquired more diagnoses (and more “labels”), which might be seen as bad in some ways, but is actually providing me with much greater understanding of how my head works, and I hope, eventually, how to control it sufficiently to live a life of reasonable quality.

Perhaps, when I’m a bit more able to focus than I am currently, I’ll write a bit more about bipolar disorder and how it affects me and how it fits into my life. I’ve spent most of the last decade becoming reasonably competent at managing the condition, through a combination of medication, various talking therapies, mindfulness, and, possibly most important of all, keeping a daily mood diary (which I did for years until summer 2016 when the “autism hypothesis” was formed and things went completely crazy – once I am a bit more settled I shall set up a monitoring system that takes both bipolar disorder and anxiety and autism into account). Although some of these treatments were not totally suitable for me because they exacerbated issues caused by undiagnosed autism, they did, on the whole, work for management of my bipolar disorder – what I need to do now is to adapt them so that they’re working WITH my neurology to improve my mental health, not against it.

And my understanding of mental health issues and neurology continues to evolve, as, I hope do the understandings of others. Part of the reason I write this blog is to try to understand things myself (it is well-known in teaching circles that explaining things to other people is a good way to test understanding) and also to try to help others understand the complicated world inside some of our heads!

I do, however, fear that I’ll look back on that last paragraph (and possibly most of the rest of this blog) in 8 years’ time and think that my “rough style and my evident lack of knowledge were just a bit too grating”, just as with the 2009 writing, so maybe it’s time to stop here.

Euthymic bipolar day to you all!

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!