Update

My husband spoke to the triage service this morning. He described the conversation as “VERY interesting”.

I should probably not go into too much detail about everything that was said, because of “reasons”, but we do seem to have made some progress.

The triage service are going to refer me straight away to one of the other centres, which is in a different county. That centre maybe has its own issues and we’d previously heard that it was being closed, which was another reason we didn’t select it, but it seems that it is still operational at the moment and a new contract is being negotiated for the autism part of the centre. The triage service are going to try to get me an emergency appointment there as they understand that my health is rapidly plummeting at the moment and that we have absolutely no support. The triage person also says that they had no reason to believe that this other centre has any issues with autistics with comorbid mental health conditions.

He told the person at the triage service about the meltdown in the first appointment and the person there said that it was obvious that I’d have a meltdown in such circumstances.

If the psychiatrist returns to work while my second referral to the other centre is still processing, then I will go back to the hospital to see the psychiatrist, so the two referrals will now be in parallel.

***

Maybe, just maybe, we will eventually get there.

One thing that has happened as a result of all this taking so long is that my identity as an autistic has become more and more certain. I am no longer asking the medics to establish whether or not I am autistic, I’m now asking them simply to provide the official piece of paper to give evidence of what we already know. With all the stress and so on I am melting down more frequently, having more and more problems with speech and forming words, and am losing verbalness sometimes for hours at a time. I hope that once this diagnostic mess is sorted out that things will become just a bit easier and I’ll be able to get on with a bit more of my life.

What has also become apparent is how absolutely essential a role my husband is playing in all of this. I could not do what he is currently doing. Not only is he telephoning and discussing and making complex negotiations, he’s also still doing pretty much all care for me. Without him I’d be eating even less than I already am. I’ve lost half a stone since September, and I wasn’t trying to. Luckily my physical constitution is reasonably good and I wasn’t tiny to start with, but it’s not ideal.

How anyone without someone to care for them in the way that my husband has been caring for me in the last few months would fare, I shudder to think. I wonder how many people are out there, still struggling on, still knowing that their lives aren’t right, still wondering if this will be the day that they kill themselves because life is so absolutely bloody difficult? I wonder how many have tried to get someone to listen to them and to give them some answers, but have given up because it’s all just too much work at a time when they have so little energy.

I’m lucky I’m not in that position.

Adding Up

One of the things that has emerged out of this whole chaotic diagnostic fiasco is something rather lovely. It turns out that many of the people I know are really really good people and really want to help.

Interestingly, I’m already finding this blog post much much more difficult to write than the last one. The last one was factual information and sorting out logical sequences. This one involves feelings, and I’m very much less good at coming up with words about feelings. I discovered recently that that’s called alexithymia and it’s almost certainly one of my autistic traits. Usually, if I need to describe how I really feel about something, it will take me a day or so to come up with the right word!

Anyway, there are lots of good feelings about the way that people have been reacting to all this stuff, and the way that so many of them want to help. I sometimes read the posts of others and feel that I’m living this autistic experience rather backwards – I read tales of people self-diagnosing or receiving formal diagnoses of autism and their families and friends being disbelieving and talking about “labels” and so on. I still have no formal “label”, but I am yet to encounter anyone who has told me that I’m talking a load of rubbish about being autistic (maybe there are some who think so, who knows, but if there are, then they are doing a great job of keeping their doubts to themselves, which is much appreciated at the moment since I have quite enough to deal with).

Maybe I just got lucky and know really nice people, but loads of them are suggesting things and trying to come up with plans to make my life easier. I have been sent a lovely colour changing lamp diffuser, been given suggestions for meditation, relaxation, and so on, received many messages of support and offers of things that I might like on facebook, even a picture of someone’s dog to cheer me up, these from people I know well, people I know a bit, and some people I’ve only just met. Some are on my own wall, some are on some of the groups and pages I’ve recently joined, and some on the facebook page for this blog.

Some of my religious friends have told me they are praying for me, and said that they hope I don’t mind because they know that I’m not religious. Of course I don’t mind. Whether or not I believe in any higher power, the fact is that these people are devoting some of their time and their thoughts to hoping that my life might improve. That is generosity that mustn’t go unappreciated.

Other friends are doing similar things in their own way too, looking up articles and books and things that I might like, pointing me to websites and so on, talking to people they know who have contacts in the area of autism and mental health, trying to find ways in which they might help.

It’s all slightly overwhelming, but in a good way, I think (remember I’m really not good at this feelings business)!

And yesterday, after the second assessment became an aborted mission, several people started to suggest that they could help me fund a private autism assessment by sending me money or organizing a crowdfunding campaign.

Wow! People!

*more feelings I don’t really have the words for but if I wait three days to write this blog post then history will have moved on and goodness knows what will be in my head by then*

My immediate answer to all – apart from Wow! People! which is definitely a reaction but possibly not a particularly informative one, is “Please can I keep that offer on ice for a time that might be weeks or months?”

I *think* the process now is that we are going to keep the NHS referral to the hospital open, but also see whether there is any use in getting the triage service to investigate the other centres. There is no doubt that the best thing would be to get an NHS diagnosis because that offers the most support and is the most recognized as far as possible benefits and things is concerned.

However. If it becomes apparent that the NHS really is hopeless then the option of a private diagnosis would possibly do several things.

The first is that it would give me a diagnosis to start my own process of acceptance and to help me move on properly with life while I was still waiting for the NHS to catch up. I’ve come across several people on groups who have had private diagnoses which have been massively helpful to them and have then gone on to get the formal NHS diagnosis at a later date. I’ve even heard of cases where the private diagnostic report has been sent to the GP and it has been accepted for NHS purposes, although this is, apparently, variable and unpredictable. We still have a lot of research to do on all this.

The second is that if I did get a private diagnosis we could then take it back to the NHS and say “Hey guys, you didn’t manage to give us this, but this person HAS made this diagnosis and says that I am autistic and since we’ve gone to all this trouble and expense you can damn well get your act together and finally give me an NHS diagnosis – OK?”, effectively using a private diagnosis as a stick with which to beat the NHS diagnostic services (not literally, though, I’m not going to try bashing psychiatrists round the head with a rolled up bit of paper because I don’t want to end up in a padded cell)!

The third is that if the NHS does just totally fail me and we reach the end of the line with them, then a private diagnosis would quite possibly provide enough proof for me to get some support that I would not get from a self-diagnosis, and it would certainly go a long long way to helping me to accept everything and start to rebuild my life, and could possibly improve my quality of life much more quickly than remaining self-diagnosed.

So the practical answer at this stage is “Maybe, and we’re still thinking what to do next” if that makes sense, and I hope it does. Thank goodness for blog posts because I’d be completely incapable of conveying this information in any sort of conversation at the moment – I’ve even taken to typing out e-mails in a document first before putting them onto the actual e-mail because somehow what I’m doing now is just translating my thoughts into words, but as soon as it’s an actual e-mail or a message it becomes communication and therefore much more difficult.

I never said my brain was easy to fathom, which is, of course, a large part of the problem!

The other thing I want to mention briefly here is that I’ve also had a few communications from parents of autistic children who have said they’d really value my input on how they can help their children. Again, I don’t really know the words for it, but I guess “Awesome” or “Doubleplusgood” or something similar. I’ve hung out in groups of autistic adults long enough to discover that I’m not alone in hoping that one of the things I will be able to do as soon as my head is together enough, is use my experiences to help others work out what would be most helpful. Although I’m a brand new autistic as far as actually knowing about it is concerned, I have 45 years of lived experience behind me and if I can use that to be helpful then I absolutely will. I’m absolutely touched beyond belief that parents would value my input in this way and I’ll absolutely do the best I can to help, limited only at the moment by my own head being somewhat all over the place. I’m on to it as soon as I can be though.

It has even crossed my mind that I might eventually end up in some form of autism education. There’s no doubt that autism has, already, become a massive interest of mine (I can’t understand how it wouldn’t, given what I now know), and maybe I can use some of my experience and learning ability to be helpful at some point. Perhaps there is some place in the world that can use a qualified schoolteacher with personal experience of violent meltdowns and non-verbal episodes who knows that wearing certain clothes is actually distressing and painful? Who knows? That’s almost certainly something for the future because at the moment I’m still struggling to do even familiar things in places I’ve been before, but it shows the direction my mind is working in and gives me hope that I might possibly be useful in the future.

And, when you put all this stuff together, when you add it up, it is actually rather powerful. When I took up mindfulness a few years ago several people said they’d found that mindfulness wasn’t a cure all etc etc. I already knew that. I’ve been through 20 years of various therapies and medications and am yet to find the magic thing that sorts life – and I never will, because it doesn’t exist. But, what I said to several people about mindfulness was this: I’m aware that it won’t solve things, it might not even be 10% of the solution to my problems, but what is true is this – mindfulness costs me very little, an 8 week course and a couple of sessions with a teacher, a book, a bit of time, a bit of effort, but not much. And if it makes even the last 1% difference between me staying well or becoming ill again, then that little effort is well worth it. If I add it to running, and CBT techniques, and better food, and listening to music, and all manner of other things that might improve my wellbeing, then maybe they’ll add up to just enough to get me through the dark times.

And, like crowdfunding might, at some point in the future, mean that we can amass enough money for a private assessment, all the thoughts of the people and offers of help add up to make something pretty big too. Offers of finance, contacting people, sending articles, comments, lamps, pictures on my facebook, parents valuing my experience, even prayers, all add up. Maybe one of these things will be the last 1% that keeps me going through one of the darker moments? Who knows. I’ve also had a massive amount of help from a very small group of friends who listened to me for months before the first assessment – they happened to be in the right (or wrong?) place at the right (or wrong?) time and ended up witnessing several months of extreme moods and so on, so they’re probably very grateful that this is all now public and there is so much support from everyone else! They have been, as we say round here “totes epic”! There might not be much in the way of official support around, but the informal support from friends has been utterly fabulous.

I might not always be able to respond to all of this with much more than a “thumb/like” on a message, and it’s still all filtering in to my head. The best I managed to do to thank folks up until now was the poem I wrote a few blog posts ago, and I’m really not that much good at the whole feelingsy thing. But hopefully you’ll all get what I mean.

TY x

Waiting

I have to go back tomorrow. The news is not good. There is still no psychiatrist available for me. I have to see the same woman again and another woman psychologist. That is all there is.

There have been tears. Not hopeful. Not happy. Wishing I had never been born. Why me? Why was I born like this? Why did nobody notice? Why all the time I have to work harder? Why cannot I get help? Why is everything in life such a ruddy great battle all the time?

My head hurts. It is starting to detach from the world again. My ears ringing painfully, constantly. Loudly. I watch myself from the outside.

This is the moment when I wonder if it worth it. This is the moment I have to use all the strength. I am not even worth them providing me proper help. My feelings of worthlessness enhanced still further. Guilt at breathing the air.

Maybe in a day the ordeal will be over. Or maybe it won’t. Such uncertainty I cannot cope with. And everything out of my control. Dependent on some stranger who might or might not know anything.

My head hurts. So very very much.

Waiting…

Waiting…

Waiting for the second assessment.

When the anxiety is more than my head will take
I dissociate.

The world no longer real.

Happened last time too.

My head

Distant.

The world

Unreachable.

Thoughts

Fragmented.

The answer to every question…

“I don’t know”

Vaguely hoping this time will be better.

Hoping for the best.

Preparing for the worst.

Worrying they will once again fail to see the obvious

And Occam will end up with hair extensions…

Please Brain

Please brain,
Please work right.
Just enough to get stuff done.
To be useful.

I know you are broken.
I know you are struggling.
I know.

But I want to keep a bit of my life.
I want to hold just some of it together.
It is important to me.

E-mails waiting for answers.
Struggling to find the words.
Executive function, planning,
Deficient.

Uncertainty gnawing at me constantly.
The upcoming assessment. Fear.
Energy levels. Unpredictable.

Will I be well enough to run this race?
Can I play this gig and that?
People waiting for answers.
Need brain
For assignments and projects.

I talk strongly to myself
At times like this,
Calling myself harshly by my maiden name.

But no punishment
Can make my head work right.
It never could.

The system is wrong like that.

I am desperate to work,
To succeed, to be the best I can.
I always was.
Where I failed it was because I couldn’t, not wouldn’t.

You cannot do anything you put your mind to.
That is a lie. A filthy vile lie.

I am trying.
So very very hard.

I always was.
But people never believed me.

Please brain.
Let me keep some bits of my life.
I am prepared to work as hard as I possibly can.

I always was.
And I always did.

It’s just that some things are
So much more difficult
For me.

Resolutions

So, it’s New Year’s Day and the world is full of people making resolutions, deciding that they want to try to improve their lives and so on. I don’t usually make resolutions, but I have, for many years set myself goals and used the New Year to focus on things that I’d like to achieve in the year ahead.

This year is slightly different. So much has changed in my life that the old system is not going to work. I’m still so unwell and life is so uncertain that I haven’t the faintest idea what I will be capable of doing in a few months’ time – setting specific goals really isn’t possible right now and I’m simply trying to get through from day to day. Just coping with the existing commitments and trying to decide how to answer e-mails and so on is taxing my brain massively.

I have set myself a few general goals, most of which are basically concerned with saving some of the parts of my life that are most important to me from completely falling apart, but beyond that, I cannot do more. Especially as the “get a formal autism diagnosis” pop-up referred to in my post “Why Bother?” is still flashing up in my head and the impending appointment is still causing me a massive amount of stress.

However, I have been “inspired” by some of the more typical pieces of advice that might work for some people to realise what bad advice much of it is for me at the present time, and to come up with my own alternatives. One of the things I’m going to have to come to terms with now I know so much more about the things that make me ill and the things that make me well is that a lot of the traditional “self-help” advice is not necessarily appropriate for me. I need to adapt it, partly because some of it is actively bad for me (e.g. get out and spend more time with people) and partly because my literal interpretation of a lot of it (e.g. keep pushing through the pain) means that I really will not stop until I reach the point of physical or mental collapse.

So I’ve come up with a few “alternative resolutions”, ones more suited to the person I really am than the person that society would like me to be. Little things that will help my wellbeing and will, perhaps, form the basis of a new way of living for me. I hope that maybe, one day, I might be able to educate people out in the world as to why some of the things that work for them, fulfil them, and make them feel good, don’t do the same for everybody. For now it is the start of a list that I’m sure will grow as I learn and discover. Maybe I’ll return to it and adapt it in a few months, but it’s the best I can do for today. I’ve written it in the form of advice to myself, so the “you” below is actually me, though maybe, for some of you, the “you” could be you too!

1. Screen time and mobile phone use is not evil. Sometimes, when you lose your words, it is your only option for communication. Staying alive by watching television programmes is just as valid as any other method. Never again feel guilty for carrying your phone everywhere, for getting it out to reduce anxiety when you’re surrounded by people and you start to feel ill. The technology naysayers do not understand the value of these devices to people like you – ignore them.

2. Remember that the internet is where most of your friends live, and where most of your support comes from. Meeting up with people in person can be lovely, and is sometimes even necessary, but it tires you massively and when you socialise with people face-to-face you are using energy much faster than most of them are so you can only do a small amount of that sort of thing. Don’t withdraw from the world and things you enjoy completely, but budget your people time carefully.

3. There is no reason on the planet why you should make eye contact with people on a regular basis. You have never been able to do it properly anyway, as evidenced by your lack of knowledge of the eye colours of your friends, but your ability to know what sort of teeth they have! Only force yourself to look at people when absolutely necessary. You have already found that if you are polite and nice to people that most of them really don’t mind whether you look at their eyes or not.

4. Stop pushing on through the pain. Your husband came up with the fabulous analogy that mental pain is like muscle pain – you need to be able to distinguish between the good and the bad. Learn what is acceptable and enables you to live a fulfilled life, but also learn what is damaging you and reducing your quality of life – and stop doing it! You are great at pushing through – you’ve been doing it for years. Now you need to learn when to stop and when to be gentle with yourself.

5. There is a lot of talk about how beneficial it is for people to “step out of their comfort zones” in order to grow. At the moment your comfort zone is under a blanket on the sofa. Every time you even put shoes on or step out of the front door you are out of your comfort zone. You do not need to make an effort to leave your comfort zone – you are doing that just by existing. Most people don’t think twice about going to the shop for a pint of milk, but for you it takes a massive amount of energy. Acknowledge that and ignore the glib remarks made by those who do not understand.

6. Give yourself recovery time. Lots and lots and lots of recovery time. Because of the way you process speech, participating in conversations tires you much more quickly than it does most people. Producing speech and giving real time answers is even more exhausting. Add the sensory issues into the mix, the overstimulation and processing, and you are working really really hard just to do ordinary things. Make time to recover. Do not feel guilty about staring at the wall – it is essential for your wellbeing.

7. Be alone. Stay at home on your own, quietly, with no pressure to speak to anyone. However extroverted some aspects of your personality might be, and however much you are excited and interested to know what’s going on, your brain simply can’t cope with too much of it. It has been making you ill for decades. Learn to be by yourself. Find interests you can do alone.

8. Find ways of expressing to the social people how important it is for you to spend time by yourself. Many of them will not understand. Sometimes you will need to be alone when there are people around, such as during tea breaks and social occasions or at races, and you need to find a polite clear way of telling those who come over to talk to you because they think you are lonely or being ignored that you are deliberately isolating yourself in order to recharge your batteries.

9. Do not be afraid to say no to things. Book blank space into your diary and protect it as if it were a formal commitment you had made. Do not be tempted to book this blank space for planning or otherwise pushing yourself either – leave it absolutely blank. Yes, you will struggle with massive fear of missing out, you know that, but you must choose carefully what to do because you don’t have enough social energy to do everything. You need more space in your life than most people do.

10. Listen to your own body. Really listen to it. If it tells you that it needs to spend half an hour or more rocking on the sofa or bashing against a cushion or jumping up and down or chewing something or flapping its hands or staring at a soft light or sitting in the dark or silently burying its face in something soft or anything else non-damaging, then do it, and do it as often as you need for as long as you need. It is your way of regulating yourself and you already have abundant evidence that it massively improves your wellbeing and makes you feel much less anxious and much happier.

11. Any time you see “advice”, remember that much of it is not written with people like you in mind. It is written for those with a different sort of mind. Many of those people have an inbuilt social knowledge that you don’t have and will be reading that advice differently from how you are. Many of them will be people who can go out for a meal with friends and return home feeling happy and relaxed rather than stressed and exhausted. Many will be people who have large comfort zones and do need to be challenged to leave them – the advice is for them, not for you. Ignore it.

12. Do not feel bad about asking for help. You might look strong and well, but you have many invisible conditions that mean you are not. I know it is difficult for you to accept this. I know you would rather be independent, fetch your own food, be a “normal” person in every single way, but just because that’s what you’d like doesn’t make it true. You need to work out what adaptions you need in order to be able to function as effectively as you can in the world, you need to be able to tell people about them, and you need to stop feeling guilty when other people have to help you.

13. You have a very uneven set of skills and abilities. You need to identify those things that you are unable to do and come up with compensatory strategies. It is not wrong to accept that cooking meals is beyond you and uses so much energy that you are too ill to eat food once you have cooked it. Give up. There are ready meals and other ways of getting food. It is more important that you get nutrition and eat regularly than it is that you try to cook fresh food. You also need to remember that you don’t feel hungry in the way that many people do and you sometimes need to make a conscious effort to eat. Leave the food where you can see it, set timers, reminders, and so on.

14. Do not feel pressured into answering e-mails and messages straight away, and continue to use phones for outgoing calls only. You have days when those sort of words work better than others. Do the communication work on the better days, and, unless it is really really urgent, don’t worry about doing it on the bad days. You will be more efficient that way and use less energy. Remember that you are not great at “changing mode” quickly, so plan your work to minimise task switching and maximise your available energy.

15. Be gentle with yourself. You are still recovering from a huge shock. You are still burnt out. You are still coming to terms with your new identity. Do not compare yourself to others – this is something you need to do your own way, in your own time, on your own terms. When you can, consider your skills and the things you are able to do, and how you can make your life work, but only when you can. In the meantime, just keep breathing, stay as well as possible, and maintain those things you value. You have spent more than 4 decades trying to be the person society wanted you to be – now it is time to be the person you really are.

Positivity

Much 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.

🙂

Balancing Act

We 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

So, 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…

The Analysis

Slowly, 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.

The Aftermath

I 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