A Tale of Two Assessments

74-2017-02-22-12-26-06Last time: less than an hour.
This time: nearly five hours.

Last time: fluorescent lights.
This time: natural light.

Last time: just show up.
This time: information given.

Last time: sent materials.
This time: they read them.

Last time: alterations, cancellations.
This time: arranged, confirmed.

Last time: deserted, abandoned.
This time: explanation, care.

Last time: distraught, tearful.
This time: relieved, contented.

Last time: traumatised, scared.
This time: reassured, helped.

Last time: confused, alone.
This time: enlightened, supported.

Last time: injured, devastated.
This time: safe, grateful.

Last time: violent bad feelings.
This time: calm gentle feelings.

Last time: caused more problems.
This time: solved many problems.

Last time: maybe brain injury.
This time: clearly autistic.

Last time: uncertainty and pain.
This time: acceptance and comfort.

Last time: seriously suicidal.
This time: tired but resting.

Last time: no point to life.
This time: a new start.

FKM Officially!

73-2016-12-15-16-23-48I’m still reeling from the events of Monday. My thoughts are still not totally working coherently, and I have a whole bunch of feelings that I can’t identify and am still trying to work out. Both my husband and I are still also massively worn out after months of strain.

Five hours of talking to anyone about anything is something I find exhausting under any circumstances, and when a lot of that talk is to two new people, and the outcome of the process is really important, and a lot of the subject matter centres around my childhood, difficulties I’ve had through life, and the poor state of my mental health, it becomes even more exhausting. I even came home with a sore throat, simply because I’m not used to that much talking!

Yesterday I didn’t even have the energy to open the laptop to turn my jottings into a blog post, though I did complete One Day After, ready to post when I could. The evening of the assessment itself I managed to put up the Announcement (along with a visual fanfare for the picture), and jotted down the following, which never made it any further than a jotting:

Knackered
Shocked
Did all that really happen
Me
Autistic
Officially
Diagnosed

Thirsty from talking
Relief relief relief
They were amused when I said 2002 symmetrical

They asked me what happy felt like
I didn’t know
Perhaps this is happy

There are still so many things to discuss, and to work out, and to sort. Still lots of big feelings that haven’t quite worked out what they are yet. I can’t describe them because I can’t make the words happen properly yet, but I know they’re good. But very big. It’s almost 48 hours since I was diagnosed as I type these words, and it still feels very brand new and different.

There’s something significant about discovering I am autistic after 45 years of a life that kept going wrong in so many ways for so long, and working out why. And the whole notion of what I’d regarded as my normal being something that turned out to be the result of a different sort of brain. And how odd it is to type autism into search bars and find a whole load of other people who are the same as me, having spent my life with other people telling me that life wasn’t like this, it was like that, but for me it was like this, and apparently that’s because I’m autistic and it’s like this for other autistic people too. That’s really strange in so many ways.

And it’s all going to take a lot of working out, but I can start to do that properly now. The confirmation from the people I saw on Monday is a huge step to working it all out, partly because they UNDERSTOOD. They actually knew what I meant, and they made the assessment in a way that got the things that might cause problems and worked out how to deal with them before they happened. I’ll write it all up properly sometime, when my head’s processed it all.

And after a childhood working like crazy to try to fit in to the world, and a teenage accepting that I never would and taking refuge in music and study because they were the only things I really understood, and a quarter of a century of adulthood plagued by mental illness and the desire to be dead, some people finally got what it was and gave me an official label to explain why it had all been like that, and, when autism is added to bipolar disorder (that diagnosis still stands, as a comorbid condition), things make sense.

After so long living a life that didn’t work, to find people who believed what I said, and understood, and could finally officially say what was going on, was such a relief. And, interestingly, I even learnt a whole load more about another of my autistic traits, as it became obvious that there was something else I hadn’t even considered, that is clearly a result of autism (I’ll blog about it sometime, but not enough words now).

This assessment could not have been more different from the first. Totally different experience. To those who are out there still in the position I was in last week – keep going, keep asking, because there are people who can do it right and it is worth it.

I know that all my “problems” are not solved simply by being officially diagnosed. I know that there is a lot still to process. I know that there will still be dark times – being an autistic with bipolar disorder and anxiety probably means that my life will not ever be totally easy and smooth. I know that having a diagnosis isn’t some sort of magic spell that will cure everything, and that it’s a starting point for trying to work out how I can best function in the world and best live my life. But I now have that starting point, and it’s straight in my head, and I have the best chance now of official help or necessary adaptations or whatever.

Just a couple of weeks ago I wrote something on my phone (it was another started poem that never went anywhere) about my doubts, and how I wondered if I was just going mad. Going through a 5 hour assessment with people who clearly understood and knew what they were doing, and being told straight away that I clearly fulfilled the criteria for a diagnosis of Autism Spectrum Disorder (for that is its official title these days) has cleared those doubts.

The people will now write a report. I’m impatient to see it already, but my husband reminds me that I must be patient. Then they will give me a follow up appointment in about 4 weeks time, so I can gather questions and so on to ask them and they will point me in the right direction.

It’s the start of a new phase of life. I would be crying with happiness, but that point hasn’t yet been reached. Those sort of emotional reactions take quite a lot of days to happen for me, and the feelings are still buried under a whole load of surreality and slight dreamlikeness.

But it’s good. Properly good. Finally knowing me – officially.

An Announcement

71-2017-02-10-13-58-01Today, after an appointment that lasted nearly 5 hours, and included extensive interviewing, some testing and observation of me, I sat and listened to a very very lovely woman say the words:

“It’s clear that you fulfil the criteria for a diagnosis of Autism Spectrum Disorder.”

I am officially diagnosed as autistic as of today. At this moment I feel a mixture of total relief and utter exhaustion.

My head needs to do a lot of processing now. But this is very very very good news.

I will return when I have more words.

False Summits

68-2017-02-16-11-56-27When I was a child I did quite a lot of hill walking. In recent years I’ve taken to fell running. And, as anyone who walks or runs up hills or climbs mountains will know, one of the most disappointing and frustrating experiences is the moment when you trudge, exhausted, those last few steps to the top of the hill, but instead of being rewarded with a beautiful view and the moment of touching the triangulation point and knowing you’ve “got there”, all you can see ahead of you is another hill, seemingly bigger than the one you’ve already climbed. You know that if you want to reach the top then you’ll have to keep going, to carry on climbing, to drag your aching legs and burning lungs onwards, because otherwise you will descend, not with a sense of achievement, but with a sort of stale disappointment.

Once you know of the phenomenon of the false summit you can, to an extent, prepare for it. You can look at the contour lines on the map, you can make yourself aware that this is a multi-stage climb, you can take a sandwich or a little bite of something tasty as a reward for the smaller summits to encourage you towards the bigger ones. But the first few times you do a hill, when you haven’t remembered the map perfectly and it’s just a bit further than you think it will be, there is frequently that sense of disappointment as you have to dredge up yet more energy to go up that bit further and to keep climbing.

I googled “false summits” because I am wont to googling things. Google told me that false summits “can have significant effects on climber’s psychological state by inducing feelings of dashed hopes or even failure.” Google is correct, dashed hopes and failure were exactly what I felt after my first two autism assessments.

About a week after the failure of the first assessment I saw a cartoon, a bit like the one I’ve attempted to draw above, on an ultrarunning page. Obviously, it was meant there in the context of literally running up hills, something to which I can relate quite strongly these days. But, seeing the little person (who on the original was just falling off the crest of the first peak) with a new monumental task ahead of them resonated with me not only in a practical way but in a psychological way, as I was starting to realise that the process of obtaining a formal autism diagnosis was not going to be an easy one.

This is, of course, one of the reasons why self-diagnosis is widely accepted within most autistic communities – the process of getting a formal diagnosis is, for many people, very difficult and involves a great deal of stamina and perseverance, often at a time when a person is already compromised energy wise because the very process of discovering they are autistic has been triggered by some sort of crisis or burnout. Without my husband’s help I’m not sure how I’d have managed to get this far – it has been difficult and stressful in the extreme anyway, and how much more so it must be for those who don’t have someone absolutely 100% supporting them I cannot imagine.

So, as we approach assessment number three, I feel like I’m trying to trudge up the hill again, in the hope that eventually I shall reach the summit. I learnt from the first assessment that lots of forms, and lots of checking, and doing everything absolutely as well as I could was utterly useless in the face of someone who stopped the assessment because they said they couldn’t diagnose me. We were then promised that there would be someone available in January and the second assessment was booked – the promise of someone who could see me turned out to be a lie because there was no such person available and it felt like I arrived once more, with the triangulation point almost in sight, to be turned back because the path round that side of the hill had been eroded and slipped into the valley below. The stress of waiting for the second assessment and getting our hopes up once again was, of course, just enough to mean that the whole of the Christmas vacation time was spent stressed out and worried, which wasn’t great timing.

And so we’re trying again. I feel like my legs are exhausted. My lungs are shredded. I have eaten nearly all my sandwiches. My backpack is digging into my shoulders and I really really just want to get to the top now. I don’t know whether I will or not. I don’t know whether this is another false summit I see ahead of me. I don’t know whether, by the end of next week, I will still be trudging up this particular hill in all weathers, still trying to get to the top, or whether I’ll be standing on the top, the sun will come out and I’ll be surrounded by beautiful views.

Uncertainty all round. I see the hill in front of me, but I don’t know whether it’s really the top yet. My mind is struggling to focus on much else at the moment, but thinking of analogies to describe it all helps somewhat. I dissociated quite a lot before the first two assessments, once the anxiety had reached a stage where my brain simply cut out. Maybe it’ll be the same this time. At least I’m prepared for it now.

And if it turns out to be yet another false summit or the path is broken again then I might well end up, as I did after the second summit, coming back down the hill for fresh supplies of sandwiches (another referral to another centre and a repeat of the whole formageddon experience). Another return to base camp for supplies, another failed attempt, another lot of energy needed.

Getting an autism diagnosis is like some sort of crazy psychological endurance sport!

Can you tell the anxiety levels are rising fast?

False summits…

The last sandwich…

Forms and evidence…

Uncertainty pervading…

The future, just a question mark, at what might or might not genuinely be the top of the mountain…

Autistic or Broken?

58-2017-01-21-22-05-52Yesterday, I put up a post on my Finally Knowing Me page on Facebook (feel free to like/share – it’s all public) about my levels of confidence of receiving a formal autism diagnosis. Before the first assessment I was 80% confident of getting a diagnosis, but 20% doubtful, but, since the first assessment, my confidence has plummeted and now the percentages are reversed and I’d say it was more like 20% confident and 80% doubtful.

Then there was some stuff about expectations and evidence, and how CBT taught me to use the evidence available to disprove my negative thoughts, but actually that’s a really bad idea because the evidence doesn’t disprove them, it reinforces them (there’s a whole blog post to be written about all that stuff at some point).

Something in the post triggered one of my friends to make a comment to the effect that I should remember that I wasn’t broken, but had a different way of seeing the world.

And that comment then triggered my head into realising what it is that’s so frightening about the prospect of not getting a formal autism diagnosis and being officially classed as autistic.

And it runs thus:

If I DO receive an autism diagnosis, and I do fulfil the criteria for being classed as autistic, then that diagnosis will effectively tell me that I have a different way of seeing the world. It will say to me, and to anyone else who cares to take any notice of it, that my neurology is different, that I have a different way of understanding people and communicating with them, a different way of organizing my body, a different way of perceiving light and sound and feeling and so on, and also that this difference has been there all my life (so it explains why my life has gone wrong in so many ways in the past) and that it impairs my ability to function within the bounds of “normal” society. It will also mean that certain things that have been interpreted for years as me being naughty, or picky, or a bit forthright, or disorganised, or lazy, will all now be explained by me just having a different sort of brain.

Conclusion: I am autistic.

However, if I DON’T receive an autism diagnosis, and I don’t fulfil the criteria, the reverse is true. I will not have that protective label. I will not be classed as having a different way of seeing the world. I will be considered, as I have been all my life, as a bit quirky and eccentric. Maybe I’ll manage to get a diagnosis of Sensory Processing Disorder or similar so that my sensory issues are recognised, but that will not help me when I lose my words and am unable to use the telephone. Maybe they’ll say I’m traumatised now, but not recognise my struggles as a child and I will know that I was simply really really bad while trying not to be. Maybe it’ll be back to just bipolar disorder and “ordinary” mental illness, but that won’t explain why my inertia is so high and my executive functioning is so poor. And, when I compare myself to those people who do have an autism diagnosis yet are able to hold down jobs or run homes or whatever, I will know that I can’t do those things not because my brain is different, but because I really am just a mess.

Conclusion: I am broken.

OK, it’s not quite as simple as that, because you have to factor in the fact that I am, evidently, very broken even if I am autistic, partly because I also have bipolar disorder and severe anxiety and so on, and partly because going undiagnosed and unsupported and trying to live a “normal” life for 45 years and suppressing my autistic traits has led to two major burnouts and been very damaging, especially to my mental health, which is shot to pieces. Being autistic doesn’t preclude brokenness any more than being non-autistic protects from it. And equally, there is justification for my difficulties in life as far as having mental health issues alone – my bipolar disorder is sufficiently impairing that it would probably have impacted upon my ability to work and care for myself even if autism had never entered the picture. Furthermore, it might well be that I have enough autistic traits to impact on my life significantly, even if I don’t fit the clinical definition or cannot provide enough evidence.

Add to that the imperfections of the diagnostic system, the fact that in my case it is relying on memories from many decades ago to fill in gaps about my childhood, the 40+ years I’ve been learning and masking and covering up all my difficulties and giving an Oscar-winning performance on the outside while falling apart on the inside, and it really isn’t an exact science.

But, even so, this is at the nub of the situation: if they say I am autistic then I’m not broken, but if they say I’m not autistic then I am broken.

And if I judge myself by non-autistic standards then I’m a terrible failure and my life has been a pointless disaster (but with caveats about mental illness) and I see very little hope for the future because I simply can’t work any harder or be any better than this – I am basically a broken, failed, weak human being and I always will be.

But if I judge myself by autistic standards then I’ve achieved an amazing amount and been incredibly strong throughout my life (even at great cost to my health) and I see that there really might be hope that I could live a gentler, happier life and achieve goals that are more suitable for me – in a few years’ time I could possibly be a mended, successful and strong autistic person.

And all this is swirling round my head at the moment, like some sort of primordial “soup”, out of which sentient life (or in my case, a moderately functional mind) might or might not eventually emerge. It’s almost exactly 6 months now since I had my first meltdown while away on a camping trip – 6 months ago I didn’t have even the vaguest notion that I would ever be thinking of myself as autistic, or that I’d even know a fraction of what I now know about autism, about myself, about my childhood, or about many people around me. At that point I just believed I was a bit tired and that life would carry on as normal once I got home.

So my head is trying to make sense of it all. I’m trying to work out the extent to which I’m autistic, broken, mentally ill, traumatised, and so on. I’m trying to find a health professional who will actually help me with all of these things. I’m trying to come to terms with the fact that I now identify as a non-binary autistic person. I’m trying to live through ordinary day to day life and remember to eat and so on. I’m trying not to let other aspects of my life (music, study, running and so on) fall completely by the wayside. And I’m still in the process of recovery from burnout and waiting to see exactly what level of functionality I will have once I’ve stabilised.

No wonder I get a bit wobbly from time to time.

Uncertainty and Fear

57-2017-02-01-17-28-33I finished the forms. I spent all of yesterday’s energy on them. And today I feel sick and exhausted. But that was to be expected. I’m also really stressed that all the things I was planning to try to do this week haven’t happened. But I can’t do anything about it at this stage. Every time I just feel like I might be getting things back on track I run out of time and energy again.

We have returned the forms and my second referral has gone through. My husband had an e-mail from the assessment centre today and we now have a date for my third assessment – it is in a few weeks’ time, at the end of February. It was quite a detailed and helpful e-mail, although my name was written with the wrong spelling throughout.

So now we start the wait again. The e-mail did speak of assessing whether I just had a few traits, and might be not enough for a diagnosis, and it would be unknown whether they would tell me on the day. And all sorts of other unsettling things. All sorts of unknowns and uncertainties.

And so the uncertainties are once again raging through my own head. Am I imagining all this? Will I once again be sent away with no answers and no help? Will I “fail” the test? And if I do, can we even contemplate the energy to do it again or will we simply give up? And if we give up, then I just have to try and live whatever years of this life I have left as best I can, and the whole autism business will join the whole childlessness business as one of the great unknowns, but the nightmare ended not by the menopause but by my death.

As time goes by I’m now getting less and less confident about the whole thing again. Life has always been like it is. I have struggled for years with it and nobody has ever officially given me an answer that makes sense of it all. I’m not that confident that they will now, given how badly the first assessment went and how they just cancelled the second one (see part B of the Blog Guide for the full story).

When I got the date for the first assessment I was nervous, yes, but I was also excited that it might be the biggest day of my life and the day that provided the answer as to why my life has gone so badly wrong in so many ways for so many decades.

Now I have the date for the third assessment, there isn’t excitement. I’m just scared. Scared that it’ll be as bad as the first, and that I’ll yet again be not believed, and that I’ll be sent away and there’ll be no closure and we’ll just have to stay alive and carry on alone somehow. I feel that this process should have happened years ago, maybe when I was a child with a parent to look after me, or in my early adulthood, before I was middle-aged and exhausted by everything, before I went through two major burnouts, back when there was still hope of building a life, maybe even of being supported enough to survive in the workplace and not ending up as useless as I’ve now become.

But at least the next assessment is in a different place, with a different person. With any luck I won’t ever have to go back to the first hospital ever again, which would be good.

This is another of those “therapy/journal” blog posts. This process is very hard, with many ups and downs, and in the absence of any sort of therapist, some of the downs will inevitably find their way here.

The irony being that getting another appointment, in only a few weeks’ time, from the second referral centre (meaning I don’t have to go back to the hospital), is actually a really big and positive step forward, and my brain knows this. My brain also knows that they can’t possibly tell me what the outcome of the assessment will be until they’ve done the assessment (otherwise there would be no point to autism assessments and diagnoses if they just diagnosed everyone), so of course it’s a whole load of uncertainty, but that doesn’t make it any easier.

Because the fear of it all going wrong again is still there.

Formageddon The Sequel

56-2017-01-30-21-26-37There was an original Formageddon (my term for the feeling of gradual apocalypse in my head when faced with questionnaires and forms to complete) back in October 2016 when I was referred for the first autism assessment. But I wasn’t blogging back then, not confident enough to be publicly autistic. Too frightened, too afraid to even mention it without a formal diagnosis. Maybe I’ll write the entire “Formageddon” experience up properly sometime, but, for now, I’m about to plunge into Formageddon The Sequel.

For the original Formageddon I spent a huge amount of time working on something called the RAADS-R (Ritvo Autism Asperger Diagnostic Scale-Revised) and my husband interviewed my mother by phone in order to complete an SCQ (Social Communication Questionnaire). The hospital have never given me scores for these forms, neither were they even mentioned at the assessment, which, after the amount of work I spent completing them and explaining what the real truth was where the questions were badly phrased or imprecise or simply nonsensical, I found rather dismaying.

And now, with the second referral to the second place, I have received a whole load more forms to do. Two pages of “Developmental Questions” that mean we will need to call my mother again (some I know she can’t answer, because we’ve already asked and she doesn’t remember), one called simply the AQ (Autism-spectrum Quotient) which I recognise as the “internet quiz” mentioned in The Discovery, and one called The Cambridge Behaviour Scale, which has 60 questions, many of which will require extra explanation like the RAADS-R did.

I am not filled with joy at the thought of this task. I am exhausted by all this, low on energy, almost beginning to suffer from a sort of “autism fatigue” (I have been obsessively learning everything I can about autism for 5 months now) and I deeply hate dredging up stuff about my childhood – a period of time I’d hoped I’d closed the door on forever when I grew up and left school and home.

I’m also trying to use energy to salvage what I can of my present life. I’m still vaguely trying to save my Open University maths study, which is rapidly falling apart. I want to go running, play my viola, spend time with the animals. Almost anything other than go through another load of Kafkaesque questions that I already know will annoy the hell out of me and trigger all sorts of stuff I really don’t want triggered. And what I desperately need to do, more than anything, is to rest and recuperate, not sit at the computer making myself feel ill.

But the only way I will get another assessment, and maybe a diagnosis, and any closure to this whole diagnostic nightmare, is to go through these damn things, and is to sit, once more, anxious and frustrated, trying to go through this whole process all over again. As seems to be the way, in order to get help I have to make myself feel bad.

Doing it once was stressful enough, doing it again feels even more so, especially when the result might then be another really stressful difficult assessment with an inconclusive ending that leaves me feeling invalidated and suicidal.

This is taking every scrap of my willpower. I feel weary.

Disclosing Identities

49-2016-12-31-12-56-17I have read several chapters in books and blog posts concerning the advantages and disadvantages of autistic people telling others about discovering they are autistic. As I mentioned in the first post of this blog I was hoping to wait until I had an official diagnosis before disclosing my autistic status to more than a few people who already knew, but since the process of finding anyone who will give me a formal diagnosis is so difficult and could still take many months (I’m rapidly losing faith – my husband e-mailed the triage service again last week to try to ascertain whether there had been any progress at all and has not yet heard back) I had to go ahead anyway – life was simply too difficult when I was keeping something so big a secret.

But being so open about things is something that has, maybe, been easier for me than it is for some people. And, ironically, that ease is produced because I am both privileged in some ways and disadvantaged in others.

First the privilege. I am a white, well-educated, grown-up person. I am literate enough to be able to write coherently and, when my words are good, I’m confident conversing with a wide range of people. I live in a part of the world that is generally open and tolerant to differences (I really hope it stays that way, although, like many, I fear recent events have altered things somewhat – but that is not a discussion I wish to have here and is only mentioned in passing). I rely only on my husband for a living – he knows everything and isn’t the slightest bit worried about any of it. My family seem to be pretty OK about all of it as far as I can tell, and, to be honest, if they’re not, then that’s their problem and they’ll come round to it all eventually or not. My friends are a pretty open-minded cool bunch, and if any of them do take exception then they weren’t real friends anyway so they can just depart and that’ll be the end of it. So far I haven’t noticed anyone treating me any differently from before, and everyone has either responded positively to what I’ve said or has politely kept their mouth shut or doesn’t care anyway. In starting this blog I did put a certain level of guard up against those who might want to cause havoc – maybe there will be some, but so far I’ve been lucky. I also have supportive people around me who will help if that does become a problem.

And then the disadvantage. I am childless and cannot have children. This means that where some worry about any consequences regarding their children if they tell people that they are autistic, I don’t have to bother. It’s simply a part of my life that doesn’t exist. It is one of the greatest sadnesses of my life that I will never have chance to know what it might be like to live in that sort of happy family situation, but in this particular instance it takes off a whole level of complication. I am also unemployed and have been so for many years. My attempts to sustain work have failed over and over again and I eventually reached a level of sickness where I was signed off from work permanently (I’ll write a post at some point about my working life and how it gradually disintegrated). This is bad news in that having a job and being well enough to work would be wonderful from both a life-fulfilment, and financial point of view, but it does mean that I don’t have to worry about telling a boss or colleagues I am autistic or about whether I will keep my job. I have no professional standing in any world, so I cannot lose it! If I ever do get well enough to consider working again then it will have to be as a fully open autistic person, and I might well need many adaptions to working hours, environment, and so on. Even working from home independently would present a massive challenge for me because my ability to communicate regularly is not great and my executive functioning is absolutely shocking.

It also became apparent after the first assessment that concealing my autistic identity was driving me to the brink of suicide. The effort of concealing my new-found knowledge was killing me. The alternative to any consequences of telling the world I was autistic was possibly ending up dead. At that point, as I’ve mentioned in an earlier blog post, I was stuck between a rock and a hard place and the rock was still on fire and had just exploded out of a volcano – so the hard place it was.

At the moment I am still very envious of those who have already received their formal diagnoses, or those who feel comfortably able to live life as self-diagnosed autistics. I’m also envious of those who didn’t have to wait until they were in their mid-40s to discover who they were, and who could adapt their lives and embrace being autistic before they got as sick as I did. Also those who are now receiving their diagnoses as children, who won’t be told all their lives how badly behaved and lazy they are because they have a label that protects them, and who won’t suddenly get a massive shock when they’re middle aged and burnt out, and won’t spend decades in a psychiatric system being subjected to well-intentioned but sometimes harmful treatments. I’m envious of those who have support services helping them, who have therapists to listen to them, and who have had considerate and helpful diagnosticians and so on. Of course I am – I’m human!

But I have also come across stories of people who are much older than I am before they finally discover who they are. I know there will have been autistic people in the past who struggled with life in the way that I struggle with it and who never had any explanation but simply went to their graves thinking that life was really really hard work and difficult and painful. Some will have had even worse times – maybe locked up as a result of other conditions being misdiagnosed (I’ve found tales online of people locked up until their 80s, filled with unsuitable medication, only finally freed from incarceration and a drugged up haze once their autism was recognized). I weep for their lost lives, and I weep for those who I know existed (I was very nearly one of them – my life could so easily have ended in my late 20s) who killed themselves because their lives were so tough, who never got through the burnouts and the breakdowns, and never even discovered they were autistic and that they needed help and compassion and strategies to cope with living in a hostile world.

And I also come across those who are not able to disclose fully their autistic (or gender) identities to those around them. I read about young people, dependent upon their parents for a roof over their heads, whose parents are in denial and don’t want to support them. I know there are people all over the world who don’t have the privileges I do and who are living lives that are not quite right for them and they have no choice about it for whatever reasons.

And yet again I come to the conclusion that for all the comments I’ve had regarding the bravery and honesty of this blog (there have been, embarrassingly, lots), I’m able to be open and honest and write these words because I am lucky.

And it also makes me particularly glad when they help other people in any way.

Clarification

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Mission Aborted

31-2016-12-29-19-40-30So, the second attempt to get an assessment for an autism diagnosis never even got as far as the launch pad. I should, right now, have been sitting in a hospital with a psychiatrist, probably looking at books of frogs again, and maybe acquiring the piece of paper that will enable me to get any help that might be available and will make me feel believed, but I’m actually at home, making blog words again and attempting to survive another day on the planet.

I’m still not completely sure that we have the full story or know exactly what’s been going on behind the scenes, and, to be honest, I think that most of the people involved don’t really know what’s going on either, which is a big part of the problem. But as far as I can gather, the main problem seems to stem from the fact that not only am I autistic (or, as far as the authorities are concerned, under investigation for autism), but I also have other mental health issues and a long history of mental health problems, and, it now seems, rather a substantial amount of trauma from the years of masking and lack of support, and the difficulty seems to be that in order to diagnose me with autism they need to work out exactly how my autistic traits interact with all my other mental health problems. The only person who can do that under my current referral is an autism specialist psychiatrist, and the only one in my county and the next county is currently on long-term sick leave. So we are now at impasse – the people who would diagnose me if I was an “ordinary autistic” are unable to deal with me because it is beyond their remit, and there is nobody else available.

We started to discover this yesterday when my husband got one of his “feelings”. My husband has a talent for spotting patterns that results in his occasionally appearing almost supernatural. He has, in the past, resigned from a job just one month before the company went bankrupt, predicted that a coach due to turn up to drive a bunch of people the length of the country wouldn’t show (and, as a consequence, sorted the problem before 50 people had to spend the night standing on the street). He got a “feeling” yesterday, so he called the assessment centre at the hospital just to “confirm” that all was well and also to ask for a bigger room with some natural light.

Initially, all seemed fine. A second psychologist had been found to join the first one at the assessment, and the two were going to be having a meeting about me to discuss my case in the early afternoon. I wasn’t wildy optimistic about the second person being another psychologist, because I know that I really need a psychiatrist (I’ve had a lot of dealings with both counsellors and psychologists in the past, and have generally found that my mental health issues are way beyond their capabilities – some have been lovely but not helpful, one counsellor I saw was actively damaging and the only reason I kept going to the appointments was that I got an afternoon out of the office environment which was damaging me even more badly than the counsellor did). However, the psychiatrist was still off sick, and there was no suitable psychiatrist available to cover, so it was psychologist or nothing.

Anyway, my husband also gleaned some other information from this first contact with the service. He discovered that the first assessment had been stopped because of my meltdown. There was something about guidance being to stop assessments if I became distressed. He tried to explain that the meltdown wasn’t “distress” in the conventional sense, but part of the condition under investigation, but because meltdowns are not on the list of official criteria for autism, there is again a situation of impasse. A solution was found to this difficulty in that we would produce a letter, which I would sign, to say that if I had a meltdown in the assessment again I was to be allowed time out to go for a walk round the block, get away from the artificial lighting and any loud voices, stim safely on my own, and then return to the appointment. My husband also looked up and printed out the National Autistic Society’s information on meltdowns for guidance, since meltdowns are quite frequent and common for me, and it was agreed that a more suitable, larger, room would be provided.

So this wasn’t exactly perfect, but it did seem that we were starting to get somewhere and that maybe things would get sorted out second time round.

Then the two psychologists had their meeting about me, and the dung hit the wind machine once more!

***

I’ll just explain a little about the process we’ve gone through to get to this stage, because it seems that the whole process of getting me assessed might have gone wrong earlier in the system, and it also appears that we have (before I’ve even received any diagnosis or help) thrown up a communication problem in the county’s system for diagnosing autistic adults with mental health problems.

First, after my self-diagnosis in September, I went to see my GP. My GP, who has known me for over a decade, instantly had a “lightbulb” moment the minute I said the word “autism”, and pretty much kicked herself for not seeing it earlier. Totally obvious once you see it. I started to self-identify as autistic from that point onwards and my GP referred me to the county’s triage service – the first people who will assess me initially and refer me on for a full autism assessment and formal diagnosis.

The next thing that happened was that I received a bunch of forms from the triage service. I dutifully filled in the forms and the questionnaires, telling them why I wanted a diagnosis, a bit about my history (including all my mental health history), how I was unemployed etc etc. and I returned the forms to the triage service.

A few days later I got an e-mail from the triage service saying they’d reviewed my forms and information and that they could offer me a pre-assessment chat if I wanted one, but that I really didn’t need one and they were happy to refer me to one of three centres for assessment. All I needed to do was to select one of the centres and tell them which one. I selected the centre closest to home, the hospital in our nearest city, where I knew the parking situation and so on, since I knew it would be a stressful occasion and I wanted to minimise stress.

Around a week later I received another lot of forms and questionnaires, this time from the hospital, one lot to be completed by my mother (my husband interviewed her down the telephone and we filled in as much as we could) and one lot to be completed by me. We then sent off this lot of forms, received a letter from the service thanking us for the forms, and asking us to call to make an appointment for the assessment, which was the appointment I had at the end of November.

And, as I’ve recounted in the three blog posts from Too Articulate onwards, things started to go wrong.

***

The result of the meeting between the two psychologists was that they decided that neither of them was able to diagnose me. I was, indeed, too complicated for both of them and fell beyond their remit. All that bringing in a second psychologist had done was to clarify the need for a psychiatrist.

So the first psychologist called my husband to cancel the appointment.

And, it seems, there is even more to it than just a problem at the hospital. I am only reporting the best we can gather here, and I still don’t know whether we’re getting the full story, but this is the best I have at the moment. The psychologist said that I should never have been referred to that hospital because they don’t deal with autistics with mental health conditions. She also said that the psychiatrist who is off sick is actually from the next county and is not supposed to deal with mentally ill autistics in our county anyway because of something to do with PCT (Primary Care Trust) issues (this is into NHS admin realms that are currently beyond my knowledge, but might become within my knowledge rather soon if this situation continues), but that he would deal with me when he returns to work because I’m already in their system.

This, of course, presupposes that he ever does return to work – I know the pattern of being signed off sick for a month and then another month and so on, and I know that the end of that pattern is not always a return to work… This was one of the patterns that triggered my husband getting one of his “feelings” yesterday morning and prompted him to call the hospital…

So, it is now not clear that there wasn’t some sort of cock up by the triage service, who should, maybe, never have referred me to the hospital in the first place. They knew about my mental health history (I have copies of the documents I sent them) but, seemingly, referred me to a place where I then encountered a psychologist who was totally out of her depth. My husband got the impression that she had never encountered anyone like me, and we now wonder whether it’s the first time she’s actually witnessed an adult having a violent meltdown. Her lack of knowledge about autistics and clocks certainly indicates that her knowledge about autism has some significant limitations.

We’re not totally sure that we’re still getting the full story and not some sort of “back covering” version. The assertion that the assessment was stopped as soon as I exhibited signs of distress is distinctly inaccurate, since the whole frog book thing happened after the meltdown, and if it’s about duty of care then just abandoning us at the end doesn’t really fit. We were also assured that there would be a psychiatrist available for the second appointment and it seems that assurance was made without any actual ability to back it up. My husband explained that when communicating with autistics what we really want isn’t some sort of “second guessing maybe possibly” stuff, but genuine assurance that there would be a psychiatrist available. Otherwise all we are perceiving is a tissue of lies. He did, I’m told, receive an apology, and it seems that there have been lessons learnt about how to communicate with autistic people, and that holes in the countywide adult autism service have been uncovered.

Although this is a horribly difficult experience for us, we do have a couple of things going for us. First, and most importantly, there are two of us. Had I been on my own, the mess at the end of November might well have cost me my life, and I’ve read news reports that suggest autistic people have taken their own lives as a result of this sort of thing. I didn’t, because I have a husband who is an exceptionally good carer – that is only a matter of luck.

Secondly, the very intelligence that has tormented us over the years and raised expectations and so on, is actually very very useful in these situations. We have both studied at postgraduate level and have research backgrounds, so we can put in the work to find out what we are supposed to do. We are not intimidated by people who call themselves doctor or professor or whatever (in fact, we don’t even notice) because many of our friends do, and we’ve both worked in public sector admin roles so we know quite a lot about the system and we know its shortcomings. We will get through this by treating it as a project, a goal. That, at the moment, is what is keeping us going – although our mental health problems kept us both from succeeding in the academic world as we would have wished, we are still both, at core, researchers and teachers and are driven by an insatiable desire for information and clarity.

If, as a result of our experiences and our actions, someone else, in the future, who doesn’t have a husband and an obsession with research and so on but does have the same complex mental health issues that I do, doesn’t fall through the cracks in the system as I have done because we have found those cracks and made people close them, then it might just save their life. And that alone makes the fighting worth it. We can but hope.

As far as our next move is concerned, we now have to wait to see whether the psychiatrist from the hospital returns to work (which will be at least another month) or whether they manage to find someone else who can do the job. In the meantime, my assessment process has stalled there and there is nothing to do but wait. I have to force myself to get on with life while the autism diagnosis tab in my brain is still open.

We will also get in touch with the triage service (who, it seems, might also be hearing from the hospital regarding future referrals), but the contact person there only works part time and is still on Christmas holidays, so we’ll have to wait for that too. We will then ask them what possibilities there are for the other two centres on the list and see what we can work out from there.

For the time being there is nothing else we can do, except continue to document as much as we can and keep investigating all the possibilities. But they are for a future time and a future blog post because this one is already much too long!