Why Bother?

23-2016-12-17-16-05-13In a couple of earlier blog posts I mentioned that life is still pretty difficult at the moment, and cited one of the reasons for that difficulty, namely that I am still very exhausted and in a state of autistic burnout. I’m also, obviously, still reeling from the discovery and the change in identity resulting from it (I think I’ve mentioned that autistic brains are not great with change, so a big one like this is taking some getting used to).

I’m also in a worse state now than I was a month ago, because of what happened at the assessment at the end of November and because the person I saw on that occasion was unable to give me a formal diagnosis, and, in fact, didn’t even complete the assessment. Several people have wondered why getting a formal diagnosis actually matters to me, and why the fact that I didn’t get one on that occasion has affected me in the way that it has and is still using so much of my energy and currently causing me a certain amount of exogenous depression.

I have been considering this question. Why DOES it matter to me to be formally diagnosed, to have an official person say to me “Yes, you are autistic” and to get their departmental administrator to type out a letter to that effect, which will then be folded badly in order to get the address to appear in the window of the envelope, and which will arrive, probably slightly crumpled, a few weeks later? Why do I now care, since I have already taken the step of telling people that I am autistic, have done lots of research, and am already discovering strategies that work to alleviate struggles I’ve had for years? Furthermore, I’ve not, so far, encountered a single person in my own circle of friends who has said to me “I don’t believe you’re autistic – show me your piece of paper to prove it!” so why bother?

It’s a very good question, and one I’ve given a lot of thought to, given how much it is costing us in emotional energy to pursue it and how difficult it seems to be. I’ve come up with a few reasons why getting formally diagnosed is so important to me. I’ll try to explain them as best I can.

The first is a matter of practical convenience. There are straightforward practical reasons why having a formal diagnosis is better than not. The first, and most important, is my mental health treatment. Without a diagnosis of autism I am treated as an “ordinary” mental health customer. In a crisis I will get sent back to CMHT, treated, probably with heavy duty antidepressants and mood stabilizers as before, and I will go round the circuit I’ve already been round many times, over and over again. I seriously believe that treating me for bipolar disorder and anxiety without acknowledging the obviously huge role that being autistic plays in my mental wellbeing or otherwise is basically putting layers of paint onto a wall in which the plaster underneath is crumbling – I’ve spent 20 years doing that. It is only minimally effective, and sooner or later the paint falls off again. The only solution is to replaster the wall.

Furthermore, my current health problems, depression following the disastrous assessment aside, are not primarily mood related. They stem from sensory overload issues, anxiety caused by those issues, and sleep problems, linked to both. If I thought it would be wise to take any sort of medication at the moment, beta blockers or melatonin would do me far more good than quetiapine, but without a diagnosis of autism I’d be unlikely to get them prescribed. For the time being, a bottle of Pinot Grigio every night is having to serve as my medication for both anxiety and sleep – it is the only useful substance I can obtain without the help of the medical profession, so it’s the best I can do for now. I’d really rather prefer not to have to continue with that long-term because it’ll almost certainly damage other parts of me eventually.

In addition, without a formal diagnosis I have no access to any help that might be available. I’ve been around long enough and am realistic enough that I don’t believe there will be much, but there might just be something. When I was diagnosed with bipolar disorder I was allocated a CPN (Community Psychiatric Nurse) who was incredibly helpful. I was also given assistance applying for some benefits – something I could never have done on my own – as the benefits have run out I’ve never reapplied for them because I struggle massively with the forms. Maybe, just maybe, there would be somebody who could help us – my husband is currently working three jobs, out of the house from 7 every morning until 9 or later most nights, then he comes home, cooks our dinner, cares for the animals, and collapses into bed. He also has to leave food for me with specific instructions during the day or I don’t eat (I try, but it is really hard) and he messages me to remind me. Additionally, since I am currently unable to shop, where I would usually drive to a supermarket, he is now walking or getting a bus there with a huge rucksack, making him even later home. He cannot do this for ever. He will break. Any support that could take a bit of the strain off, or even start to allow me to recover enough to contribute again would be amazing.

And just silly things. Our local authority offers a card that autistic people can carry. You need to send your diagnosis letter to get one. I have meltdowns and shutdowns in public from time to time. I was once detained at the swimming pool and only persuaded the staff there to call the doctor not the police because I managed to tell them I was mentally ill. When a child has a meltdown in public they are accused of being naughty and their parents are accused of being bad. When an adult does, especially if out without a carer, then it’s more likely that people would think I was drunk or on drugs and call the police. I have had to get off buses to be sick with anxiety in the past and not been allowed back on because it has been thought I was drunk. An official card would make me feel much more secure.

The Open University are begging me to apply for Disabled Students Allowance. I have not done so, even though getting some support might be the difference between me finishing or not finishing the course I’ve put so much effort into. I’m also supposed to have filled in other forms allowing my husband to act on my behalf. I don’t feel justified in any of this without a diagnosis. I cannot send evidence. There is nothing except my say so.

Maybe, just maybe, I might one day be able to get back to work. It seems such a very long way away at the moment that it hardly features, but if I do, I’ll need adaptions. For those I’ll need evidence. Again, I have none.

I also have to consider my own head, and the way that it works. I like things to be “clear cut”. For me it is important to me that if I say I’m autistic, then I have the proof. I come from a world where kids who wrote their own sick notes at school were punished, a world of work where, when you call in sick, the first thing they do is to ask you to send in the doctor’s note. It is hardwired into my head that I need a piece of paper to prove I am not lying. Without one I feel like a fraud.

Ironically, I am absolutely happy to accept others without a piece of paper, it’s not a need for pieces of paper per se, but an absolute need to prove that I am not lying. Maybe that stems from years of disbelief, from the times when I’ve been accused of being lazy, of being told to pull myself together. I don’t know. But I feel a need to “do it properly”. Although I believe it would be wrong, even a clear “no” from the woman at the first assessment would have been easier to cope with – something to fight against even, but the hanging uncertainty is something I have a real problem with. Uncertainty about something at this level gives me huge amounts of anxiety. Massive.

We encountered this when we were trying to have children. They did lots of tests on us to try to find out why we were failing to have a family, all of which came back saying that everything was “normal” and there was no explanation for our failure to reproduce. The “no explanation” thing was devastating. I wanted them to find something wrong, some reason why it wasn’t happening. Preferably a reason that they could fix, but if not that then a definitive answer so we could mourn our non-existent children fully and move on with our lives. They found nothing. The acceptance process, which will not be fully completed until I’ve finally finished going through the menopause, has so far taken well over a decade. Because there is no concrete answer. No closure.

Similarly, if I never get an autism diagnosis I’m sure I will eventually live as a self-diagnosed autistic, just as I’ve learnt to live as a person who is childless for no apparent reason, but it will take a long long time for me to accept. A formal diagnosis will provide a definite point, confidence, acceptance, and within, maybe, just a few years I can be living the best life I can manage, rather than the uncertainty in my brain continuing to keep me awake at nights and continuing to bother me and irk me for years, possibly decades, to come. At the moment there is a huge “browser tab” open in my head with “autism diagnosis” written on it. Every time I attempt to open up another programme, I get this giant pop up, saying “autism diagnosis tab is still open, do you want to continue”. It eclipses everything else in my life.

I don’t expect people will really understand this unless they’ve had the same feelings. In the same way that, regarding childlessness, I’ve often been on the receiving end of the phrase “children aren’t the be all and end all” (always from people who are parents and became parents easily, I hasten to add). Folk often don’t get it unless they’ve been there. When you can’t have children and you want them then they ARE the be all and end all.

It is very easy to say that something isn’t the be all and end all when you have it and you aren’t in a position where you desperately want it and can’t get it. The fact that my e-mail inbox is overflowing with adverts from dating agencies and that I constantly read stuff from people worrying about boyfriends, girlfriends, and so on, suggests to me that many people are desperately trying to find a partner. I am lucky, I found one. One of the few things that has been rather easy for me is finding partners, including the one to whom I’ve been married for nearly 15 years. I don’t know why this is the case, but I know that having found a partner puts me, as far as the dating thing is concerned, in a huge position of privilege – I would never assume to tell a lonely singleton that having a partner isn’t the be all and end all, because that would be seriously abusing my privilege.

I’d also ask anybody who questioned my desire for a piece of paper another question. Why do people get married? Surely, from a logical point of view, aside from a few legal issues (see medical and practical help above), it really doesn’t matter whether you’re married or not. In fact, many people are happy to remain unmarried, just as many people are happy to remain self-diagnosed. But the number of shops with big white dresses, the number of pictures of smiling couples on facebook, and the number of cars with ribbons that still drive through the streets, suggest that many people DO want to have a piece of paper, a ceremony, something to mark their change in status. I got married some time ago – I knew that when I set up home with the person who became my husband I wanted to make it official. That sort of thing is important to me. Same with a diagnosis.

But, and this probably eclipses all the reasons above, after so many years, what is most important to me is to be BELIEVED. I want some official acknowledgement of who I am, even, paradoxically, from a system for which I have, since the first assessment, lost rather a lot of respect. I have seen items on the news where someone has been wronged, and been through years of court cases to get decisions overturned, obtain compensation, and so on. What comes over every time is that the thing these people focus on at the end of these processes is the apology. They want to hear somebody say sorry to them, and mean it.

I want something similar. I want somebody finally to admit that I have a condition that causes me to find life more difficult than most people find it. I want a bit of paper that, even though it might be crumpled and say some rather vague words about “autism spectrum disorder” or similar, says something else to me. Just a fraction of what it will say to me is: “You are not a liar. You were not naughty at school. You are not lazy. You do struggle with life more than most people. It is not your fault that you lost every single job you ever had. You are not weak and pathetic because you feel sick every time you get back in the car after shopping. You have worked your butt off all your life to achieve what you have done and it has not always been recognized. We have finally solved the mystery of what has made you so ill all these years. It doesn’t make any difference that you can pass exams – your difficulties are real and we recognize them. You have learnt so well and masked your autism for so long that it has severely affected your mental wellbeing – you can now start to heal. It is worth staying alive because now you can build a new life – officially. There is a place in the world for you. You are now allowed to find out who you really are and to be that person.”

That is perhaps the biggest reason of all, and the reason I will return to the hospital that frightens me, the reason I will ask for referral elsewhere if necessary, the reason I will do everything I can to persuade someone to take me seriously. I can say those things to myself, yes, and I have done many times since the summer. But the official acknowledgment would give me, overnight, a level of confidence that it will take years to gain on my own. I want recognition, validation, belief. I want that more than anything, even if there is no other support, no more help. Even if I come home and all I can do is carry on annoying people on the internet with long blog posts, and drinking too much wine.

I want them to see what is now so obvious and to believe me.

Is that really too much to ask?

Too Complicated

20-2016-12-02-13-36-42The chair I was sitting on was one of those with a fabric seat and back held together by a wooden frame. In my attempt to escape from the room coming towards me, and unable to perceive that there even existed in that room, a door, from which I might have escaped, I pushed the chair hard back against the wall. I desperately wanted to bang my head hard against the wall, because that was the only way I could stop the pain, but that tiny bit of my brain that was still working knew that it wasn’t the cushion I have at home. It wasn’t my safe bed. It was an alien hostile place with a shouty woman who didn’t believe me and thought I was a fake.

My upper right arm took the most punishment. From the wooden upright of the chair, as I hit myself over and over again against the hard wood. There was no soft safe place to retreat to.

My husband, himself still in shock and drained from the previous day trying to sort the appointment out, could only tell the woman that she shouldn’t try to stop me. He knows this because he knows that I am strong. Very strong. I’m a 5’9 person who weighs over 13 stone, can lift heavy weights and run long distances. He can restrain me, has done when necessary, and has occasionally sustained injuries doing so, but most people can’t. She certainly couldn’t have. We have since discussed how to deal with this situation should it arise again, and prepared ourselves that he will open the door and get me out, away from the trigger, away from the medics who seem still to be unable to tell me that I am autistic and still seem to be hell bent on inflicting yet more trauma onto me. We will not make the mistake of feeling that asking for help means we will get it, or that these people are on our side or understand our needs.

Perversely, the woman also discussed trauma. The words that stuck in my head were “you seem to have a lot of trauma” (no shit, I’ve been an undiagnosed autistic for 45 years, trying to survive in a hostile world and being told constantly that I’m so intelligent that I should be able to cope and I should just work harder), “intelligent women are a problem” (thanks for that, I’m so glad that I’m “a problem” – I’ll come back in the next life as a stupid man if that would help), and “very complicated” (well yes, that tends to be the case when you have bipolar disorder, severe anxiety, undiagnosed autism, probably sensory processing disorder as a subset of the autism, and some measure of trauma (see above) to add into the mix – if I was simple I wouldn’t be sitting in a hospital in front of a mental health professional asking for help, having spent months filling in forms and compiling information).

I turned back towards the table, feeling somewhat numb. The woman then said we could do the ADOS. The ADOS (Autism Diagnostic Observation Schedule) is a series of exercises used to assess whether someone is autistic. She asked if I was up to doing the exercises and said she wasn’t completely ruling out that I might possibly be “somewhere on the spectrum” or have a few traits so I might as well jump through the hoops so that when I came back in January to see, presumably, someone who had less of a problem with “complicated intelligent women with trauma”, I had at least completed the exercises. Having got up at daft o’clock in the morning and gone through all the stress I was keen to do as much as I could, so said that yes, of course I’d do the ADOS exercises. I also wondered if, at the end of a three hour assessment, when she’d got to know me a bit better and seen beyond the obviously scripted masking that characterized the 15 minutes preceding the meltdown, she’d change her mind and give me a diagnosis after all.

Then she produced a book. I won’t say too much about it here, in case other people going for diagnosis are reading and want to go into their own assessments on their own terms without my having influenced the way they behave. She told me it was a “weird book”, and, by this time, despite having told me how intelligent I was, had started talking to me like I was around five years old. My husband wondered whether the meltdown had disturbed her or something. We don’t know. I could hardly imagine that someone who was an autism specialist hadn’t seen people in a state of full-blown meltdown before.

The book was basically a book full of pictures of frogs and white houses. She asked me to describe each page of the book. I did. Turning each page and describing the frogs, the houses, the trees, a few people, and so on. It seemed like a terribly dull exercise, describing a whole load of random pictures of frogs, which is what the book basically was. It was one of those large paperbacks with few pages, such as you find in primary school libraries – maybe that was what had sent this woman into a sort of “primary school teacher” voice. It felt rather pointless and boring to describe a whole load of pictures that anyone who had reasonable eyesight could see perfectly well for themselves, and it made me feel rather weary. At the end of the exercise she asked me what I thought of the book. I couldn’t think of anything to say, so I just told her that it was indeed “weird” as she had already stated.

When I had finished the book the assessor started asking me about clocks. She had picked up from my description of the book that I couldn’t read the time from clock faces with hands. I have never been able to read the time from clock faces with hands. I told her this. I even showed her my digital watch and explained that I have digital clocks for the time, and hand clocks were something I considered purely ornamental. I can eventually tell you what the time is from a hand clock, but I have to go through the same process I did when I first learnt to tell the time at primary school – I say, in my head, every time, that the big hand is pointing here, and the little one pointing here, and I count up the fives, and add them up, and eventually work out what the time is. I’m quite fast at it when I can be bothered to make the effort, but, to be honest, most of the time it’s not worth it – get a digital watch, life is too short to be faffing about with all that counting.

The clock thing seemed to worry her. She started asking if I’d ever had neurological problems. Had I had a head injury? A bang on the head? Had I been investigated for neurological disability? Wearily I said that no, I’d never had a head injury, no, I’d never had any neurological investigations, no, I’d never had any significant bang on the head. To be honest, I couldn’t really see where this line of questioning was going, and I was starting to worry that I’d gone to the hospital for an autism assessment and I was going to end up either sectioned in a straitjacket following my meltdown, or being sent for a brain scan because she’d decided that I had some sort of traumatic brain injury. This was rapidly turning bad again.

And then, having said she’d do the ADOS, having told me that we’d do all the tests. She then turned out to have lied to me AGAIN. She stopped the ADOS. She said she wasn’t going to do any more and that the assessment was over. I still don’t know why. I had run out of energy to argue by that stage. Making words was becoming increasingly difficult and I just gave up.

My husband and I sat in stunned silence while she left the room, then came back and gave us a time and date to show up in January. My husband said he was concerned about me and asked about support. We were told that there was nothing available, and that I could make an appointment with my GP and then get a referral back to the CMHT (the Community Mental Health Team) in the New Year or he could take me to A&E (presumably by calling an ambulance). She didn’t even acknowledge his concerns about our journey home (I had to drive us) or how we would cope over the next few days. She then departed.

I cried on his shoulders and we made our way out of the building, past the waiting room with the cotton reels and mismatched chairs, and past the plant growing into the building through the wall. Out into the cold. Back to where the car was parked.

I looked at my watch. It was just before 9 in the morning. The whole thing had taken less than an hour. For a three hour appointment. I felt abandoned. Ignored. Desolate. Nobody even checked we were OK before we left.

On the bright side, we’d been expecting to pay for up to five hours’ car parking. In the end we paid for just two.

Too Articulate

19-2016-11-30-07-24-02It should have been the biggest day of my life. I had done the research, I’d been right through my life, I’d discussed with friends, both autistic and not, and I’d examined how I fell into each of the criteria for autism. I knew I fulfilled them all. It should have been the day that I heard a clinician tell me that yes, I did indeed have autism spectrum disorder, and the day that I finally felt believed and validated and listened to. We had asked so many times and been told that yes, we would almost certainly know on the day, and the only reason a diagnosis might be delayed would be if they needed more information. We had sent over 60 pages of information, covering my entire life, demonstrating everything. I could not imagine what further information would be required.

But it was not to be. It didn’t work out like that. The response, as far as I can remember it, was “I can’t diagnose you, come back in January.” And then we were back on our own, unsupported. No diagnosis. No support. The only suggestions given were to make an appointment with my GP or to go to A&E.

With hindsight, alarm bells should have been ringing loud and clear the day before. I was too nervous to sit still for very long and spent a large amount of time pacing round the flat or curled up with my blanket rocking on the sofa. On one of the occasions I did check my messages I found a series of communications from my husband that sent me almost into meltdown. The hospital had called to say that the person who was supposed to be assessing me was off sick and we’d have to rearrange sometime in the New Year. My husband (who also struggles massively with the telephone) had bravely called the hospital and explained that I really was in a terrible state about this and we’d been promised, and that changing plans about something as huge as this was something that made me really really stressed (the sort of stressed where I start talking constantly about taking my own life) and that we’d spent weeks counting down the days, then the hours, then the minutes until this assessment.

So the administrator had fixed someone else to cover for the sick person. We would have to be there at 8.00 rather than 9.30. Was that OK? My husband said that if we had to be there at four in the morning then that was OK. We’d do it. This was something that was going to finally explain decades of a life that had gone wrong over and over and over. I viewed it as the hearing that would finally prove my innocence and release me from the prison of a life that I hated.

And no matter how hard I tried to prepare myself for a negative answer, just in case, I knew, absolutely knew, that autism WAS the explanation for everything that had gone wrong in my life. I’d spent months studying the DSM-5 and the ICD-10 criteria, and I knew I fulfilled them all. I’d scored right at the top of all the questionnaires, submitted pages of evidence going right back to my behaviour as a baby, interrogated my mother until I’d dragged every bit of information she could remember out of her head, and spent hours and hours discussing with a group of close friends who themselves were autistic, had autistic relatives, were not autistic but knew me and my behaviour. The verdict on the self diagnosis was not only that I was autistic, but that I was a very clear cut case.

So, at 4.30 on a very cold November morning we got up, drove to the hospital, parked the car, walked round in circles for over an hour because we were so scared of being late we were really early, and finally made our way into a slightly dilapidated building in the centre of the hospital. Dilapidated to the extent that the plants from outside were actually growing into the building. We sat on the floor in this foyer area trying to thaw out a bit from the freezing walk, and an administrator then arrived and showed us into a small waiting room with eight chairs in – four made of blue patterned cloth, three orangey, and one buff. One of the orangey ones had a grubby smear on the back. The lighting was harsh, even through my sunglasses. My husband and I sat at opposite corners of the room, both stimming wildly, and I observed a yellow and a red cotton reel on the floor under two of the chairs. There was a poster on the wall stating that 91% of people who had used these psychological services would be happy to recommend them to friends and family with similar needs. I was irked that it wasn’t an even number, but thought that the oddness probably meant it was reliable!

The administrator explained that they didn’t normally provide drinks, but since we both looked so freezing she’d make us a cup of tea if we wanted. I sat and sipped my tea, aware that I felt really sick, but also aware that the assessment was three hours long and I didn’t actually want to faint two hours in – I’d been unable to eat breakfast, or very much in the way of food for the previous two days, and I figured that the calories in the milk would be useful.

A woman in leggings and a fancy jumper then arrived and introduced herself as the assessor. She said she had to sort a few bits out and would be with us shortly. We continued to wait, until a few minutes after 8.00, the scheduled start time of the appointment. She then came and collected us and took us to a tiny room with three chairs arranged around a table with a box of tissues on it. We added our tea mugs to the table and sat down where we were told. The assessor then started complaining about the chairs and saying that she wasn’t very comfortable. I wondered if she had the first clue of just how uncomfortable I was, but she didn’t give any indication that she did.

She then gave a short speech. She explained that it was over 90% likely that I would have an answer today, and that it would only be if there was a big problem that I wouldn’t know. Again, I couldn’t see what the problem might be, so I prepared to do whatever I was asked as best I could, give the fullest answers to questions, be myself as much as I knew how, and so on.

She started by asking me how I met my husband.

Easy. I’ve been asked this question hundreds of times. It’s quite a long story, which I won’t type in full here because I don’t have the energy or believe it’s pertinent to the tale I’m currently telling, but, and this is the crucial bit, it’s a story I know well. I have well-defined scripts for it, which I’ve used hundreds of times in hundreds of situations. I can tell the story, especially when I have plenty of words because I’ve spent the last two days alone, hardly talking to anyone, as was the case then. So I told her. A well-rehearsed performance, delivered as slickly as it always is, with dashes of humour thrown in for good measure.

Then she moved on to asking me about my family – brothers, sisters etc. I told her, again, more well-rehearsed stuff. More autobiographical history that I have clear scripts for. I downloaded the information from the relevant branch in my mind, spoke it out as I have done hundreds of times (a bit like some of the blog posts I write here). Information dumping, same old stories I’ve told to dozens of medics trying to get to the bottom of my mental health problems.

Finally, she asked me about my history of breakdowns. Again, stories I’ve told dozens of times to dozens of people. I told her about my breakdowns, about the people I’d asked for help over the years who had told me that I was so intelligent I couldn’t possibly be struggling. I was patient with her when she seemed to be struggling to keep up and write it down fast enough, patiently explained that I’d said September, not December, when she made a mistake. Tried, as I have done for years, to make it easy for her to understand because she clearly wasn’t keeping up, and it was, by now, evident that she hadn’t read the information we’d sent, but, since she’d been brought in at short notice because the other person was off sick I gave her the benefit of the doubt, explaining it again for her, even though I was getting more and more stressed and wondering when she’d stop taking this increasingly tedious history and actually start getting on to asking me about more obviously autistic things.

Then she stopped me.

I can’t remember the exact words, but she basically said that she wasn’t going to be able to give me an autism diagnosis.

My world started to collapse. My husband sat, frozen, shocked. He later told me that he was trying to work out how he would keep me alive because he knew the effect it would have on me.

Why? I asked.

She told me that I was too articulate and that I used hand gestures.

At that point I think I tried to tell her that I’d spent 40 years learning all this stuff to survive. I don’t fully remember what I said, or what her response was, because my head was falling to pieces. I put my head in my hands and muttered something about how much I hated being intelligent, and that if I’d been stupid someone might have taken care of me, looked after me, recognised the hell that my life had been. The connections in my head then disintegrated completely, the walls of the room came towards me, crushing me to death, the lights were turning up brighter and brighter through my closed eyes, the woman continued to talk, louder and louder and louder until I knew she was screaming in my face, and I went into full meltdown…

Different Language

08-2016-12-09-18-36-23Some of these blog posts are difficult to write. Some are emotionally draining and massively triggering – I’m working on one at the moment that I’m going to have to do paragraph by paragraph because it’s so tough, but I’ll get there in the end, and it’s a post that needs to be written, so I shall persist. Some are about things I want to say and the thoughts are all in my head in concept form but my words aren’t always in a great place so it takes a lot of effort to translate them into readable format.

Some, like this one, are difficult because I’m working at the very limits of my knowledge about a subject that I only started studying a few months ago and I’m still trying to work out what everything means and to construct my own verbal definitions of concepts that I instantly recognised from internal experience as soon as I knew what they actually were. I’m also still reading other people’s blogs and working out which ones I’ll want to share and so on – even blogging is something of a new world to me as my last efforts, years ago, were random and short-lived and I never really got into it in a big way.

I said in the post “Time Stood Still” that I initially called what happened to me at the end of the summer “some sort of mental breakdown” because that was the language I had available to me. That language, familiar to me from years of mental health struggles, diagnosed as anxiety, depression, and eventually bipolar disorder (I still believe these were not misdiagnoses, but they were only part of the full picture, and they are common comorbids with autism), is only partially accurate in my new changed world. I am now learning new terms, terms to describe things that have happened to me throughout my life, which I have only discovered since investigating autism.

What actually happened to me during late summer 2016 was that I entered a spell of autistic burnout. This is, apparently, not recognised by the medical profession, but is seemingly well-known among the adult autistic community in general, and those who are undiagnosed or hiding their condition in particular. I’ll try to write about it more fully when I have the ability to do so, but, for now, the best way I can explain it is that burnout occurs when an autistic person’s energy is exhausted, they can no longer hide their condition, and they go into some sort of extended shutdown and their autistic characteristics become very pronounced.

I believe that this is the second time in my life that I have been in autistic burnout. The first was in 2001, when I was 30. However, this burnout is different from the last, because during the last one I was additionally in a state of nervous breakdown and severe depression as a result of bipolar disorder, so that will have hidden the autistic traits somewhat. I also lived alone at that time so there was nobody around to observe much of my behaviour. And, of course, nobody knew about autism, still less burnout, and at that stage I wasn’t even diagnosed with bipolar disorder – I was just given a packet of citalopram and signed off work for a while, as had happened during a previous breakdown a few years earlier. I eventually saw a psychiatrist who sent me for group CBT for anxiety, and I gradually learnt how to live in the world again, though that was the point at which the high-achieving, high-powered me disappeared from the world. I got back to work, but never to the level I had before, and I never lasted very long in any job – it’s now obvious why.

Looking back, I can now very obviously see the similarities and differences between burnout and breakdown, and can even separate out the parts of the two that occurred simultaneously in 2001, when whichever state was the stronger at the time took over. In both states: I find life very difficult and struggle to function; there is a desire to hide away from the world; I have to cancel things, put my life on hold, and need lots of support. In both, there is strong suicidal ideation (and there have been attempts), and I struggle with basic self care such as keeping up with admin and maintaining a reasonable living environment. I also have dysfunctional relationships with both food and alcohol and any semblance of normal sleep pattern usually goes completely haywire. There are probably more things, but this gives an indication of what I experience during both breakdown and burnout.

However, there are also differences. In breakdown I am still and I oversleep massively. In burnout I hardly sleep at all and I move almost constantly. In breakdown it helps to get out into the world and to be around people. In burnout I need to be alone for most of the time. In breakdown light can elevate my mood. In burnout I’m so hypersensitive to light I sit in the dark wearing sunglasses. In breakdown I generally overeat and crave sweet foods and chocolate. In burnout I struggle to eat at all and want plain white savoury foods above all. In breakdown I can cope with ordinary levels of background noise as well as usual. In burnout I’m really sensitive to sounds and crave silence – even having to watch the TV with the sound turned off and reading the subtitles. In breakdown I have a consistently low mood and am chronically depressed without let up. In burnout my mood fluctuates wildly and periods of depression alternate with much more positive phases.

I’m sure there are more differences too, but those are the ones that I have thus far observed, along with the fact that most of my breakdowns have followed a period of hypomania (my bipolar disorder is classified as Bipolar II), and the two episodes of burnout have followed an extended spell out in the world building a life involving lots of social contact and lots of sensory stimulation. Whether there will be future episodes of either breakdown or burnout I don’t know. The knowledge that I am autistic will now enable me to change my life and possibly to avoid, or at least soften, any future burnout, just as all the work I’ve done over the years has helped me to recognise early signs of both mania and depression and to act on them early enough to reduce the severity of more recent breakdowns.

Everything is starting to make so much more sense now that I’m reviewing my life with the added knowledge of autism. Things that have puzzled me for years are finally becoming clear. Some of the snippets of memories I have from the 2001 breakdown that have never quite made sense with my other breakdowns – my reactions to sound and light, my desire to bang my head repeatedly against something, my lack of sleep, my inability to eat – now make sense when regarded as autistic burnout, and when I compare that time to the present day, it’s very easy to see.

This is one of the reasons that an autism discovery later in life is so big. It’s not just about the present and the future and a change in life from the point of discovery onwards, it’s also about redefining many many past experiences and, to an extent, rewriting the history of my life from a different perspective. It’s a life-changing discovery that changes all of life, from birth to death. The facts of the history don’t change, obviously, since this isn’t time travel, but the perception of past events and the sense now made of previously puzzling experiences by having a whole new language to work with is like a constant stream of new discoveries and realisations that really are mind-blowing!

Written Therapy

07-2016-12-14-15-01-43I wasn’t going to post today. It’s been a slow day, a very slow day, and it has taken until 5 in the afternoon for the fog to clear from my head sufficiently for me to form proper sentences.

I’m also aware that I’m in quite a negative place at the moment. The lack of validation at the truncated assessment two weeks ago is still hitting me hard. I’m still struggling with the huge dissonance caused by uneven recognition of my autism. I have spent almost 20 years in the mental health system in one way or another, seen numerous doctors, counsellors, psychologists, psychiatrists, community psychiatric nurses, cognitive behavioural therapists, mindfulness teachers, and volunteer and charity mental health workers. In two decades, NOT ONE of these people has even mentioned autism to me. Not a single one.

The recognition that I am autistic is the single most important thing that I need in order to start to repair the damage done by 4 decades of masking, the thing that, had it happened years ago, could have helped me live a happier and better life. But in all those years, nobody said anything at all. I was sent for CBT to enable me to go to supermarkets and do shopping – it taught me immense willpower and fortitude, it taught me that it was normal to feel sick and exhausted. So I ploughed on through life and that was my normal. I smiled and assumed everybody felt the same. Until the point when I could no longer manage and my body gave up on me and I ended up ill and collapsed.

And two weeks ago, having even told the assessor that I’d spent my whole life asking for help the best way I could and being told I was so intelligent I’d be able to cope, the same thing happened again – I was told that my levels of articulacy (when asked a question to which I have a well-scripted and oft-rehearsed answer) were inconsistent with an autism diagnosis and the assessment was stopped after less than an hour and I was told that I’d have to return in January to see someone else as I was “so complicated.” I’m still trying to write it up fully, but it is immensely triggering and difficult.

Then I went ahead with starting this blog and full disclosure. The decision to disclose was an easy one – not because it was an easy thing to do (outing myself about something of such massive proportions without official say so was way beyond my confidence level that I would even be believed) but because I couldn’t figure a way that life would be worth continuing with if I didn’t disclose. In the perpetual debate as to whether to choose a rock or a hard place, the decision is made somewhat easier if the rock is freshly erupted from a volcano and is still on fire!

And so I disclosed. And received a whole host of positive responses – Of course you’re autistic. You didn’t know? Yes, it’s absolutely obvious. Me too and I knew instantly you were. I assumed you’d been diagnosed years ago… and so on and so on and so on. Some of these people have known me in person for decades, some I’ve not met but they picked it up simply from online behaviour, some hadn’t thought of it but the minute I said it they said how much sense it made and how obvious it is.

So what’s the deal? Every book I’ve ever read, every quiz I’ve ever done, every list of traits, people who know me (who I honestly expected to say “Really?” and be as shocked and surprised as I was) all scream autism at the top of their voices.

Yet the medics seem to have some sort of blind spot?

This single thing that could dramatically improve the lives and health of so many people like me is being ignored. My head is wrestling with this in a big way. I simply don’t understand. What is the matter with these people?

After a calm early evening yesterday I became very angry about it late last night. As a consequence I spent most of this morning in a state of shutdown. I was still in a fairly bad state when I finally managed to drag myself out of bed shortly after midday.

I absolutely believe that when the turmoil is settled down discovering I am autistic will be a massively positive thing and I’m very keen to embrace the positive bits and find out what my strengths actually are (the things I can really do, not the things that I’ve trained to do but are counter to my natural aptitude and achieved through immensely hard work) and how I can make a better life. Since I always was autistic and always will be, I might as well make the best of it and learn how to look after myself properly, using appropriate strategies to compensate for my impairments while positively embracing any strengths I might have.

However, I also want to tell the truth. Getting up and trying to achieve something today was tough. And I share the words below partly because they are the truth, but also because someone else might need to read them sometime and know that they’re not alone. Positivity has a great place in the world. But sometimes it is more comforting to know that somebody else understands.

Slow Start

My head isn’t working right.
Everything is irritating me.
Not at ease with the world.
The thought of doing anything, impossible.
Annoyances from the last few days racing round my head.
Anger and frustration.
My legs and feet tense, moving back and forth.
Picking my skin. Chewing my fingers.
Almost paralysed on the sofa.
My brain knows there are things to do.
I cannot reach them.
There is me, and there is everything else.
Noises surround me.
I am anxious and edgy.
Thoughts fragmented.
Speech great effort.

I need to meltdown.
To press the reset button.
But it can’t be made any more than stopped.
And I am stuck.
Searching my mind for a way to feel better.

I shuffle to the fridge.
Get a “breakfast drink”
And sip the cold liquid through a straw,
Rocking on the sofa
While the weatherman on the telly
Gives the early afternoon forecast.

Movement isn’t working.
So try compression.
I wrap myself tightly in neoprene supports.
And the pressure begins to work.
And I start to calm.

It is three in the afternoon.
I am almost ready to start the day.

The Discovery

03-2016-12-07-20-11-56

Although I was completely unaware of what was about to happen in my life, with hindsight, there were a few clues. And some people have since commented that they weren’t completely surprised by the outcome.

Looking back, there were occasional messages and odd comments made, I assumed, in jest. I largely ignored these, assuming crossed wires or fanciful imaginings. Panic attacks. Stress. That is all. I get so many messages telling me that eating more vegetables or taking some magic supplement or giving up gluten or wine or whatever would solve all my problems that I tend to smile and say thank you and leave it at that.

There was also some stuff on the internet. A video of a kid in a shopping centre. It’s supposed to show something. I don’t understand it. I just assume it’s a bit rubbish. Then a quiz. Just for a lark. Internet quizzes are notoriously daft. I think one once told me I should be a goat farmer in Borneo. I score several times in the mid-40s out of 50 on this internet quiz. Ha ha I say. Internet quizzes. I return to my dreams of goat farming.

However, within three days of leaving home to spend the summer living in a tent and playing orchestral music things start to go wrong. Badly wrong. Extreme “panic attacks” as I’m still calling them. Running away to hide in a shed as the result of one small thing upsetting me. Nights silently crying in my tent, unable to think, speak, or even put my torch on. The feeling of sickness and exhaustion that engulfs me half way through every rehearsal. My inability to focus, to play properly, to cope with any more than just sitting there. My reactions to apparently ordinary things is often so extreme that I completely lose control of myself. This leaves me drained, exhausted, and somewhat embarrassed.

I know I have mental health issues. I’ve had them for decades. I also know that eating in the big room with lots of noise and people is unbearable for me. So the people make an accommodation for me and let me eat outside. I don’t like having to be different, but maybe it’ll sort things out. I am sitting with someone who asks me what my diagnosis is. I tell her – bipolar disorder. She asks me whether I have ever considered…

Of course I haven’t, not seriously. Why would I? I smile and say “maybe”. Then I chat to someone else during a tea break. We sit side by side. She describes so much of her life that makes so much sense to me. She seems to understand what I say in a way that most people don’t. When the words run out we simply stop talking and drink tea. It is easy and feels unpressured. We don’t look at each other once throughout the conversation. That feels right. More relaxing, less exposed. I know something about this person. I start to think.

When I return home there is a book waiting for me, sent by a friend who has been following my trials and tribulations on Facebook. She says “I think you should read this.” Since it would be terribly bad form not to read such a gift, I start to turn the pages. And the pennies start to drop. Slowly at first. There are similarities. Yes. But me? Really? No! Well, maybe. But this is how my life is. This is just normal life, surely? It’s certainly normal life for me.

I buy another book. A book with lists of “traits”. The slot machine in my head hits the jackpot and the steady drip of metaphorically dropping pennies becomes a deafening cascade of metal discs. This, improbable as it at first seemed, appears to be the case. I do the Internet quiz again, several times, taking it more seriously this time. My most oft-repeated score is 47.

My husband and I start to make notes. To compile data. I dredge up memories from childhood. Of bad behaviour. Of the junior school headmaster who questioned me about home life as he thought I was being abused – he sensed something wasn’t right, but didn’t know what. Of being bullied from reception to sixth form. Of hours on the swing. Of fear of the telephone. Of biting my nails until they bled. Of sitting alone in my bedroom most of the holidays. Of crying at playtimes.

And through my early adulthood. Of abandoning trolleys in supermarkets. Of exhaustion so severe that I would collapse or be sick. Of crippling depression and suicide attempts. Of my inability to sustain employment or be financially independent. Of my notorious inability to cook a simple meal or remember to eat. Of waking up most mornings for the last quarter of a century thinking “How long can I keep going with this life that has no place for me and that I find so difficult?” Of cutting labels out of my clothes, being unable to wear bras or tight waistbands. Of lying in bed shaking after social events. Of deadlines missed. Of the hours of planning needed to get out of the house. Of jiggling my legs and playing with my hair and chewing up pens and rocking gently backwards and forwards on the sofa. And so on and so on and so on. Pages and pages and pages of it.

I make a double appointment with my GP. We take the notes. The pennies start to drop in her head too. She remembers an incident where the local swimming pool called the surgery when I was detained there, apparently violent and extremely distressed. Meltdown. Too much noise. Too many people. Somebody kicked me. Invaded my space. I couldn’t cope. I gave up swimming.

My GP writes the referral. I go to a rehearsal that night and then away for the weekend without it really sinking in. But knowing that my GP believes me. Relief. A sudden feeling that all that had gone wrong in my life all these years was Not My Fault. A communication issue. Different perception of the world – over and under active sensory systems. Not just fussy. Not naughty. Not lazy at all – in fact, quite the reverse. My life, which I had long viewed as a string of failures, I now see as remarkably successful, given what I was dealing with. I achieved so much while masking a condition that made life so difficult.

Alongside the relief, I feel a sense of sadness that this was not spotted earlier. That I have lost my youth to illness and difficulty. That I am deeply in debt, have received almost no support, and have spent my life being told that I am so intelligent I’ll be able to cope and that I should work harder, smarter, manage my time better, just get my act together. Impaired executive function makes these things very difficult, especially when I’m already working at my limit to cope with the sensory overload and the complexities of interacting with other human beings. Time agnosia means that I’m actually an expert in time management, but still struggle with deadlines. I thought it was like this for everybody, but that they somehow had access to energy I didn’t and they were tougher than me.

I start the wait for the formal diagnostic procedure which I know might take months, and continue to gather evidence, while trying to cope with my fears of the diagnostic process. However, it is so obvious what has been going on all these years that I absolutely believe it. I speak to my mother and learn about my early life. I was a 4-year old who sat on my own and obsessively drew circles all day and couldn’t be persuaded to write. The teacher said she’d never encountered a child like me, but in the early 1970s nobody knew what to do about me – other than removing the paper to stop the circles. My only memory of that time was crying every playtime as I was mercilessly bullied and the playground was painfully noisy.

I start to adapt my life, and things get easier. I realise how looking at people’s eyes saps my energy. I can do it, but there is a cost. I consciously start to spend more time alone. My next pair of glasses will be tinted despite the fact that I can’t really afford them because it will help the confusion and nausea I get in bright conditions. These adaptions also come with a sadness that I know I will have to exclude myself from many social situations if I am to stay well. I will have to change my life for ever if I am not to pay a heavy price. If I plan to go to a dinner or social event I must leave two blank days in my diary for recovery. And the chances are I will end up feeling sick and in meltdown too.

But I also discover behaviours long hidden that feel beautiful and soothing and joyful to me. And I allow myself to explore what my body naturally needs to do to be comfortable and happy, even if it is counter to what I have learnt about societal expectations over the last 4 decades. The word “stimming” is brand new to me, but it turns out I’ve been doing it much more than I thought throughout my life. Now I discover how I can dissipate some of the immense stress I feel by flapping my hands and sitting on my feet and simply not forcing myself to stay still. My whole system breathes a huge sigh of relief.

The whole process of discovery and realisation took about six weeks. Six weeks of public meltdowns, many tears, massive amounts of learning and reading and researching, acute anxiety, way too much wine, almost no sleep, difficulties eating, and hours and hours of discussion with my husband and one or two others. The culmination is the biggest thing that has happened to me in my life. Ever. No question. The thing that will eventually enable me to be more myself than I have ever been, happier than I have ever been, despite the inevitable challenges that interacting with the world will continue to present.

A few days after the visit to the GP, unable to wait, as I had hoped, for the formal diagnosis, I type the words that finally make sense of my life, that feel like coming home to where I should be. It feels very strange, almost unnerving, but it also feels right. Very very right. To finally realise and admit what should have been obvious all along, but which nobody saw until this year.

I am autistic.