Positivity

27-2016-12-30-14-48-13Much of this blog so far has focused on some of the more difficult aspects of my discovery that I am autistic. Several recent posts have dealt with the problems associated with getting a formal diagnosis, and most of the posts have been written since that difficult time.

Obviously, discovering, at this stage in my life, something so big, that has caused my life to be so difficult, is going to cause regret, anger, difficulty, and so on. Loads of that stuff. And I have to work through it all, get angry, get sad, be furious with the people who didn’t notice I was struggling and didn’t support me, and eventually come out the other side. I have to weep for the wasted years, regret that it took so long and ask myself what life might have been like had I known about this when I was younger and before I became so damaged by it all.

BUT…

And it’s a very big but…

The difficulties are only part of the story, probably exacerbated by my current state of burnout, shock, and so on.

The dark moments are really really difficult. Yes.

But there are also times when I know that, eventually, this discovery (and eventual diagnosis, if I can ever find a competent medic to give me one) will be a very positive thing.

Because here’s the thing. I always was autistic. Something that happened by pure chance before I was even born has defined my whole life and my not knowing about it didn’t change that. My being autistic isn’t new for 2016 – it’s been going on since the beginning of the 1970s. I don’t get more or less autistic by knowing about it. But knowing about it does mean I can start to live a more suitable life for me. I can stop doing the things I’ve done for years that have damaged me. I can decline invitations, take time out, moderate the amount of exposure I get to sensory input or add in extra sensory input as necessary. I can stop being so hard on myself and telling myself how pathetic I’m being when I need a rest. I can realise that the reason I can’t get myself organised properly or cook a meal is that my head doesn’t work in that way and I can come up with compensatory strategies. I can reframe my past and see how absolutely amazingly well I did at a whole load of stuff despite all the difficulties.

I can also look back and see the patterns throughout my life – relate the fidgety, non-sleeping, pattern-spotting, music-loving baby of the early 1970s to the person I’ve now become. I can solve the mysteries about my life that have baffled me for decades. I can make sense of it all.

So it’s not even about what I do, and practical stuff. It’s about identity, and knowing who I am, and finally having answers to why I had 40 years of stress and never quite felt like I fitted properly into the world around me.

And for me, knowing WHO and WHY is really really important.

And there have been times, over the last few months, when finally figuring that out has been really lovely. When I’ve sat back from all the stress and just enjoyed the new-found knowledge. One of the words that has emerged from my head over and over again is relief. Finally, an answer. Finally, I can stop trying to be some sort of superwoman, but can get to know what sort of person I really am, and then be the best version possible of that person. I can relax.

Over the last few months I’ve kept a journal of sorts. I wrote the words below on 4th October 2016, and I feel that, particularly after the strife of the last month, it is perhaps good to remember them as I head into the New Year. I’m not naïve enough to believe for one moment that there aren’t going to be further difficulties ahead or that life will suddenly become easy, but I am hopeful that I’ll manage to make whatever life I have ahead of me better than it would have been had the events of 2016 never happened.

4th October 2016

Being autistic is awesome. Because it’s being me. And feeling right. And having a deep calm I never had before.

Bloomin’ challenging right now. Obv. And will be for a bit while I work it all out and teach the world how to deal with me.

But it feels so bloody lovely, coming properly home. Being myself. Flapping and chewing and rocking. No longer worrying about fitting in properly. Because I was never meant to. The pressure is off. I can watch all the social people from the sidelines, knowing that’s where I’m meant to be. I can pop into the middle briefly if I want, but I don’t have to stay there. I can go and be on my own. And enjoy it. Knowing it’s not wrong any more.

I can just be me. Happy me. Autistic me.

All is explained. All is solved.

I could cry with happiness right now.

🙂

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Balancing Act

26-2016-12-30-15-35-28We have been away for a couple of days.

Back in October, when the hot water broke at home and we had a lot of trouble getting it fixed (his social anxiety, my unreliability of words, difficulty obtaining a part, and so on) we eventually gave up on the flat and checked into a hotel for a night. In order to be sure of getting a room with a bath we booked a better than average room, and it was an absolute idyll. I spent most of the time in the bath and the rest of the time filling in questionnaires for the autism assessment service!

We don’t really do Christmas presents, aside from a few books and things we get from one or two folks, and we never buy each other anything for either Christmas or birthdays. We just decided it wasn’t our thing so decided not to do it. However, a few of our relatives sent us a bit of money with the intention that we should treat ourselves, so we decided to return to the idyllic hotel for a couple of nights.

Why is it idyllic? Obviously, last October it had the attraction of hot running water, which we didn’t have at home. But even when its hot water status is the same as at home it’s still pretty lovely. First off, the room is around two thirds the size of our entire flat, but without all the stuff crammed in, so it’s gloriously spacious. The bed is also big enough that neither of us has to hang our legs off the side and it is long enough that our feet don’t hang off the end. Second, the end rooms don’t adjoin other rooms. At home we are surrounded by neighbours – we can hear them talking, turning light switches on and off, opening and closing doors, and so on. In the hotel we have peace and quiet. Third, it is in a town centre, with coffee and a good selection of food within very easy walking distance. That means my husband can fetch food and bring it back to the room so I can enjoy the coffee I like and food I like without having to cope with being in a restaurant surrounded by other people. At the current time, when my sensory system is in this crazy state, that’s really valuable.

It’s also possible for me to go out and walk round the town for short bursts and then get back to the room quickly to recover if needed. And I’ve used the trip to start to find out what I can manage to do and what I struggle with.

For years, when we’ve stayed in hotels in town centres, we’ve gone out to explore the local area. We’ve see shops and wandered round them. We’ve browsed all sorts of things, taking an interest in whatever was around. We are both physically fit enough to walk for quite some time, so can easily spend an entertaining afternoon ambling round a town centre. Then, quite often, we’ve brought food back to the hotel room to eat it.

Only I’ve frequently returned to the room in a state of collapse. I’ve been able to do little more than collapse onto the bed and lie there, feeling utterly terrible.

And, on top of that, my hungry husband has been desperate to eat, and I have literally turned green when he produced food, and he’s had to stop eating, because I simply can’t cope with it.

It usually takes several hours of lying down before I start to feel OK again.

But now I have new information.

So we are adapting our behaviour.

On the day we arrived at the hotel we needed to get some lunch, and I was keen to get out and get some air – being stuck indoors for vast amounts of time really isn’t that much fun. So we went out, we walked round. We decided what to have for lunch, but where we would have gone browsing round the shops in the past, we didn’t. We stayed outdoors, away from the toxic lights. Yes, there was a lot of input from people, though I was in dark sunglasses, which helped.

We didn’t push it. At all. Not on the first day. No “pushing on through”, none of that “steely determination” that is so admired by so much of society these days. I bought a box of heavily reduced Christmas chocolates from a reasonably empty shop. We then went to the place next door to get takeaway sushi to take back to the hotel room. I stood and twirled my fingers at a fridge full of fish before having the exact same thing that I always do. My husband sensed I was nearing my limit. So he took the stuff to the checkout queue and told me to go and stand outside.

So I did. I stood on the street on a dull winter afternoon wearing sunglasses and holding a box of chocolates, twirling my free hand and bouncing up and down on my toes, feeling very much like some sort of bizarre undercover agent – some of them wear a carnation and carry a newspaper, but I wear dark glasses and carry a box of chocolates!!!

He then gave me the bag full of sushi and sent me straight back to the hotel while he went to collect a couple of coffees from the coffee shop.

The result of keeping the trip short, staying out of the shops, stopping before I reached overload, not pushing on through the stress, was that I was able to sit up and eat my lunch very soon after returning to the room. Very different from usual. And very different, as it turned out, from the second day, when I was already tired from the first, and stayed out for much longer, resulting in a shutdown.

My life will be full of decisions from now on. I will have to decide how much a browse round a shop is worth. I will have to weigh up the enjoyment against the cost. I am now aware that when I push on through the difficulties I’m overloading my system and making myself ill.

I feel somewhat wistful about this. I sometimes feel that I have basically discovered that I’m “allergic” to lights and noise and people. I am somewhat sad that “just stopping to browse round a shop” is now something I need to think hard about. I need to consider how much time I have for recovery, whether I’m hoping to do anything else that day. I suspect people who discover a food they really like makes them ill feel a bit the same (I couldn’t drink coffee for around 20 years – but, bizarrely, taking quetiapine sorted out the problem, though I still regard coffee as a real treat because I couldn’t drink it for so long).

The same will apply to social situations. I have to lead a gentler, more measured life. I now know that I need a lot more “down time” than most people, a lot more space between activities, a lot more blank days in my diary.

But I still want to do all the things. I still want to get excited and go places. I still want to meet people. I still want to learn stuff from experience rather than just books.

The new life is going to be something of a balancing act! Probably less so than it is at the moment while I’m still in burnout, still adapting, and still going through the diagnostic stuff and recovering from the shock of it all, but I know that I will always have to think carefully about stuff that many people take for granted.

I’ve never been that good at “moderation” but it seems that I’m going to have to learn!

Silence

25-2016-12-30-14-27-51So, at the moment, I now know that two days in a row out in the world results in me feeling very ill, then going into shutdown, and losing my words. It is happening quite often at the moment. I was completely non-verbal for about 3 hours last night.

I plan a proper post about losing words, and how I’ve been doing so regularly since I was a young child. But today is not the time for such a post because I don’t have the stamina and my head hasn’t processed it enough yet. However, I wrote a poem a few weeks ago, and after last night’s silent episode it seems that this would be a good moment to post it.

I have been
Losing words
Since childhood.

Nobody remembers
Early speech
When
Or how.

Information incomplete.

But words
Missing.
Every so often.
Throughout my life.

Silence when angry.
Silence when tired.

Stroppy?
Stubborn?

Meltdown.
Shutdown.

Sometimes just gone.
Or hard to make.
For no reason.

Ideas not lost.
All in my head.
Concepts. Pictures.
But connection unplugged.
Translation not working.

Often
Typing is the way.
Technology
Compensating.

Asking my husband for a glass of juice via facebook message…

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?

The Analysis

22-2016-12-17-16-06-21Slowly, I started to heal, and we started to come to terms with what had happened. It has taken me nearly a month to be able to write about the assessment – the first time I tried I got one paragraph in and was shaking so badly my fingers wouldn’t work to type. I had to give up and save the file for later.

I have tried, as far as possible to analyse what happened – since that is my way of coping with things. I have asked myself why it is important to me to have a formal diagnosis (that will, if I can manage to translate the thoughts in my head into coherent words, be discussed in a future post), and I have tried to work out just why what happened at the end of November was so devastating.

After I published the poem about living hour by hour on my facebook wall I gently started to interact with other human beings again. It seemed like people might be, even if disbelieving, sympathetic to how I felt. I also realised that however bad revealing publicly that I was autistic might be, it couldn’t be worse than living the lie that I had been doing. That was making me want to be dead. Even if I lost all but three of my facebook friends, was hounded off the internet for being a fraud, and people all told me to stop being so stupid, then maybe even that was better than being dead – the one thing that is certain is that having no friends and being thought an idiot is potentially reversible, being dead is not.

So I trashed the original first post for this blog and wrote another one. I kept the second and third posts, which I had already written. And I went for the “publish and be damned” approach. My ability to mask my autism, even online, had fallen to bits, and I needed to talk about it. I needed to get on with life – 45 years is quite long enough to wait. I knew there was no way I could properly start to work out how to live while I was still hiding something that is such a big part of me. Life had become too difficult to do anything else.

I’m still finding it challenging to comment on official pages and so on without an official diagnosis. I wish I was confident enough that I didn’t need one, but at the moment I’m not. My sort of confidence is a strange beast – I can stand up and play music in front of people, I can give presentations to a room full of people, but imagining I have a right to say anything on the subject of autism without an official diagnosis is terrifying. It’s why the only publicity I’ve given this blog is to post it on my own facebook page and my own personal profile. I don’t have the confidence to go beyond that. I tried to set up a twitter, but it wanted a phone number and I got scared and gave up. Even setting up this blog was a challenge sufficient that my husband had to sit with me and guide me through every step.

But I did manage to start this blog, and started to heal the damage done by the assessment. I was surprised out of my mind when people believed me – the evidence throughout my life being that they generally didn’t. And now this blog has become partly about my being autistic, and partly about the difficulty of it being recognised officially.

As I’ve calmed down and started to review what happened at the assessment from a safer distance, I’ve realised how inadequate the system for diagnosing autistic adults is. I’m luckier than many – in some parts of the country there is no NHS provision for diagnosis at all. If I was on the other side of the Atlantic then I’d have to pay a significant amount money in order to obtain a diagnosis, because, from what I can gather, such things are not covered by the health insurance systems over there. What I have is inadequate, but it does at least exist. There is still the possibility that someone might, one day, help me, although I am now much less hopeful and much more realistic that I was a month ago.

I still don’t know why medical professionals are so unable or unwilling to see autism in adults or to recognise it when presented with the evidence. I have, as I’ve said before, spent nearly two decades in the mental health system, and nobody has picked up on it. Even when I’m sitting in front of someone who is supposed to be an expert, it doesn’t happen. Is there some sort of module on “autism blindness” at medical school? I just don’t get it. Are they still stuck in the olden days when autism was considered to be a condition confined to non-verbal small boys with learning difficulties or savants who can tell you what day of the week it was on 27th March 1572? I don’t know. I don’t have any answers.

I’ve also thought long and hard about the surroundings in the room. I know that meltdowns are not on the list of diagnostic criteria for autism. I know that. BUT, anyone, surely, who has had anything to do with autism knows that, whether there is a line in a clinical manual or not, meltdowns happen, and that they can be violent. And, furthermore, meltdowns are more likely to happen in strange places, under pressure, while being forced to talk about things that are difficult and stressful, and being asked to perform tasks that are uncomfortable.

Can the NHS really not afford to sit a potentially autistic and possibly distressed person on a soft sofa? Somewhere they can bury their head, and safely bash themselves to relieve the distress without ending up bruised as I did. I thought, only half jokingly, afterwards that maybe I should send them a link to the IKEA website (my budget sofa is very safe when I meltdown at home), or if that was too much, then maybe they could find something on Freecycle?

Yes, I am being a bit facetious here, but not completely. I’m really serious that people should be protected. I know about budget constraints and different departments and so on, but I can’t help remembering the day I spent assisting a friend who’d recently had a cataract operation at the eye clinic up the road. Matching clean furniture, thousands of pounds worth of equipment, a whole team of specialists who clearly knew what they were doing.

This, again, is the tip of the iceberg of my thoughts about the way that those of us who are mentally ill or neurodiverse or both are treated. I live in a reasonably affluent area in the south of England – I shudder to think what it might be like elsewhere. I remember the poster that says that 91% of people would recommend psychological services to their friends and family – I’d struggle to send my worst enemy there on the showing of my experience so far. The administrator / receptionist who made us a cup of tea was the only shining light in a very dark experience.

In more philosophical moments I do wonder whether the woman, who had been called in to substitute for someone who was off sick, was simply out of her depth, although her assertion at the beginning of the interview that she was part of the autism diagnostic team at the hospital should really suggest otherwise. I’m still reeling from her apparent lack of knowledge of masking and scripting, her reaction to my meltdown, and the fact that she didn’t know about autistic people and clock faces to the extent that she started exploring the idea that I had neurological damage from some sort of brain injury. Again, I am baffled.

I’ve also tried to think about how to describe just why not receiving a diagnosis that day was so devastating for me. I know that many people will not understand, but for me it felt like I’d showed up for my wedding and been jilted at the altar, arrived at the examination room to sit my final exams and discovered my professor had forgotten to put my name on the entry list, gone to the funeral of a family member and discovered it was a different body in the coffin, and such similar scenarios, all rolled in to one. Whether anybody understands why I feel like this or not, or whether they think I’m being overdramatic, the fact remains that this IS how I feel about it. And that was why being disbelieved in that way was so catastrophic.

I am, now, much less confident that I will ever be diagnosed, but I will keep trying, and we will explore as many avenues as we can find with whatever energy we have at our disposal (which, currently, is not very much). I certainly now believe that unless this person in January is significantly better than the previous one, that it will be a fight, an uphill struggle, and it might take a long time. Maybe the internet will, as usual, be my refuge, and by writing this I might raise awareness of just how difficult it is for “complicated intelligent women” to have their difficulties recognized.

I do not want to go back to the place. I do not want to encounter that woman again, even with her colleague there too. I am frightened. I am traumatized. I seriously doubt I will be believed. I am looking upon it as a difficult and stressful ordeal. But I will go, because although I have very little confidence, I do have masses of willpower (that’s the upside of living as an undiagnosed autistic for more than 4 decades – although your mental health gets totally fucked up and your life falls to pieces, if you manage not to top yourself in the meantime you can end up with bollocks of steel, and mine are, once I’ve recovered from the immediate meltdown and my autistic brain’s strong protest about the change of plan, pretty tough).

I also want a diagnosis. I want to “do this properly”. It is very very important to me. I will try to explain why as soon as I can, but it’s a very strong incentive to keep pursuing the medics and to keep trying to persuade them to take me seriously.

Support

22-2016-12-11-11-56-04We grow up
We learn to ask for help
From the people with the badges.
The proper people,
The “team”,
The doctors,
The shrinks.

So we ask.
We do it right.
As we have always tried
To do it right.

But right doesn’t work.
Right is wrong.

We have no support.

But we have huge support.

Put your phone away
“They” say.
Reduce screen time.
It is unhealthy and wrong.
Internet and blogs
Stealing your time.
Rude to use your phone at table.

But wrong is right.
Friends are there.
All of them who read this blog
Who react and comment on Facebook,
Supporting, caring, helping.

Without the pressure
Of eye contact or forms or hospitals.
Still there when my spoken words are not.
Me safe at home.
Believed. Loved from a distance.

Thankful for everyone.
Who reads.
Understands.
Cares.

There is support.

There are people.
Behind the tiny pictures on my phone.

(There is also wine)

The Aftermath

21-2016-12-27-10-54-38I drove us home. Carefully. Blanking everything that had just happened out of my head as much as I could. Fortunately, driving is one of the few things I can do even when I am in a really really bad way. I can be at the stage where I can’t even get dressed by myself and am incapable of feeding myself, but I can get behind the wheel of a vehicle and be calm and competent. My life skills are very very uneven indeed. Cooking is at the bottom – some days I can barely make a cup of tea. Driving is almost at the top – I can happily drive long distances and navigate cities, even when ill. The movement of the car also calms me, freeing my mind from many of its difficulties.

Once I’d parked the car in the car park and we’d climbed the stairs to the flat, I collapsed. I knew my life was over. I had planned everything, sorted how things were going to be, based on receiving my diagnosis that day. I would come home, report to my small group of supportive friends who had helped me in the pre-diagnostic time, let my family know what had happened, allow it to sink in for a day or so, and then start the “Finally Knowing Me” blog, going public about being autistic with the confidence of a diagnosis behind me. People would finally believe me, finally stop telling me that “everybody gets tired” and that I was perfectly normal, because once a medic had told me that there was actually something wrong with me and I wasn’t imagining it, I’d be able to start dealing with it and building a new life with some support and understanding. I’d deal with all the “coming out” during December, and then start the New Year as the new me, with the new life.

But there was no diagnosis. I couldn’t tell anybody anything now. I was a fake. A sham. I had just worked out that I was faking everything all my life and spent several months getting used to the fact that I was different, but now it seemed that I wasn’t autistic enough either. I was a fake autistic too. Everything was fake. I had no identity. I started to doubt my own sanity. I was clearly deranged. The whole autism thing was me being a deluded fool. It really was time to throw the sunglasses away, grow up and get a pair of bollocks and stop acting like the idiotic “special snowflake” that I evidently was. My problems really were “all in my mind”. Stupid me.

I knew I’d have to leave facebook. I’d been living a lie on my wall for months and couldn’t do it any more. The whole thing was an act, and I no longer had the energy for it. I knew I’d have to tell my family that no, this was a false alarm, I thought I’d found out what was wrong with me, but actually it was all some fantasy and I really was the lazy failure of a daughter after all. I couldn’t make life work for me and I didn’t have an excuse either. I was just basically a pile of crap who didn’t deserve to breathe the air. The people on the evening news were right, I was a scrounger, a waste of space. I wondered why the NHS didn’t just provide euthanasia for people like me, since they didn’t want to provide support or help and I was clearly dead wood in society.

And even when I asked for help and went to the hospital, they just looked at the fucking accursed sodding bastard brains and the intelligence. Maybe I should beat my brains out against the wall. Maybe if I was properly impaired and permanently couldn’t talk any more I’d get help. Maybe if I did have a “proper physical illness” I could go to the posh new gleaming hospital up the road rather than the place with the plants growing through the wall. The state of the building accurately reflecting my own self worth. Those whose own minds tell them their lives are worthless get the feeling reinforced when they go for “care”, an indication of where they fall in the priority list. Who cares. I am a mentally ill probably-not-even-autistic. I contribute nothing to society, and society lets me know by providing me with nothing. I’m a fake everything. Being dead would be the best thing I could do for everyone. A release for me, a relief for everyone else, no longer a drain on those trying to prop me up, no longer a scrounger and a burden on society. Everything finally sorted.

Yes. These are dark thoughts. They are actually only the tip of the iceberg. I read memes on facebook that tell me to “be true to myself”. Seriously, that is not a good idea. Not at all. Part of “myself” wants to be dead, to do myself serious injury. This is not a part I show publicly most of the time. People don’t want to know about it. They look shocked, concerned. But this is part of my daily life, and has been since I was a teenager, maybe even earlier – I can’t remember. But it upsets people, and people don’t like to be upset. So I put on a smile and keep going. However, if I am true to that part of me, if I am “myself” like the memes tell me to be, then this will be my last blog post. But I know the memes are lies and platitudes and actually a load of rubbish. I know that the people who tell me that “you can do anything you put your mind to” are lying, and those who post “inspiration porn” don’t have the first clue what it’s really like to wrestle with your own mind on a daily basis simply to stay alive. Maybe they are “well-meaning”, but they are wrong. Very very wrong.

While I was realising that my life was over, and all these thoughts were racing through my head, my husband was doing what is probably the most sensible thing of all to do in such a crisis. He was making a cup of tea. He also posted on my facebook wall, e-mailed family members, and messaged those who had been supporting me to tell them what had happened as far as he was able.

I can’t remember very much about that afternoon. I remember thoughts going through my head that I couldn’t process, couldn’t form into words to talk about. I remember realising I had to do a group theory assignment for my maths course and that there was no hope. At that point I decided that the assessor had cost me my maths degree and had another meltdown – this time, at least, in the safety of my own sofa, so without causing further injury.

I also googled “clock faces autism” or something similar. Within two minutes I found a forum thread full of autistic people who couldn’t read clock faces. Why didn’t someone who was giving me an autism assessment know this? Did she know anything about autism at all? I later spoke to a friend who has autistic relatives, none of whom can read clock faces, and followed a thread on facebook that had similar information. Not being able to read clocks is, it seems, a classic trait of autistics.

My husband kept me alive through the afternoon. We went to bed. I slept briefly, then woke in the small hours, screaming, tearful, and terrified, as the walls of that horrible small room closed in on me over and over again. More trauma. The assessment. In the hospital. Where I’d asked for help. All it had done was added to my trauma. I screamed and rocked and my husband held me tight and I bit his arm. I was terrified. Nightmare. I never want to go back. I never want to see her again. Horrible horrible horrible.

The next morning, after three huge violent meltdowns in the space of less than 24 hours, I was calmer. My husband made me promise to stay alive. He went to work. He checked in with me at least once an hour on facebook. I agreed to stay alive until the end of Bergerac, the end of Lovejoy, the end of Murder She Wrote, and so on, channel hopping throughout the day, chasing familiar programmes around the television. There are those who question the value of social media, of television sets, who say people should get out into the world, turn off the electronic stuff, stare at trees and so on – maybe they have never lived hour to hour, programme to programme, scrolling through social media reading any damn thing, looking at any damn picture, just to stay alive.

The next night followed a similar pattern, except that it was quiet shutdown with tears rather than violent meltdown. The next day was the same. Living hour by hour.

Then came a turning point.

I wrote a poem.

I am not a poet. I don’t write poems. I never have (aside from a few rhyming ditties a year or so back, lost when the former blog site Posterous closed down). Weirdly, since I discovered I was autistic I have started, particularly when my words aren’t working properly, to write these strange poem-like things from time to time.

If I couldn’t come out as an autistic on facebook (for I was certain by now that I wouldn’t be believed – if a mental health professional couldn’t see it then there was no way that people on the internet would), then I could at least allow a bit of the real me to emerge. Just enough to soothe the pain a little. A bit like a cutter would make a few cuts and feel relief enough to get through a little longer. I’m not a cutter, but I know the need, and for me, the poem met that need. Expressing what I needed to say, but without needing to craft sentences of balanced prose.

I posted it on my facebook wall. It was the very beginning of the healing process. The line about not knowing who I am possibly didn’t make that much sense to some people when I posted it, but maybe does now.

Keep breathing

An hour at a time

Craving oblivion
And freedom from this world and this nightmare

Not knowing who I am
Or why I am

Not believed
Worthless

To live right now
Is to count each hour

To keep breathing
Through the pain

I do not want to be here any more
But I am trying so hard to hold on

It is not easy