Reactions to Diagnoses

79-2017-01-05-13-36-21“Diagnosis” is a word that has featured rather heavily in my life recently, and even more so during the last couple of weeks. It’s a word that is loaded with all sorts of associations, both good and bad. A diagnosis can provide relief or despair, enlightenment or desperation. It can be something wanted and welcomed, or something that is most definitely not welcome and not wanted. But I would suggest that a diagnosis of almost any description provides information, and therefore the ability to make choices based on that information.

One of the first (and simplest) diagnoses I received was that of asthma. It was clear, once the doctor had assessed my lung function and made the diagnosis, what I needed to do. I was prescribed inhalers (and later pills), given advice about using them, and sent off to enjoy my new breathing capabilities (and new found ability to exercise). Once flu jabs were introduced I also started having one each year to reduce the likelihood of getting the sort of infection that might aggravate my already sensitive lungs. Although having asthma isn’t the greatest thing in the world, the fact that I received a diagnosis and can therefore get appropriate treatment is, in general, a really positive thing. Discovering that the reason I still had a persistent cough after many many months (I was drinking 2 bottles of cough syrup every day and not improving) was the result of my being asthmatic rather than having some more sinister problem was actually a great relief.

And so, a week and a half ago, I received my autism diagnosis. It’s not been quite as simple as getting a diagnosis of asthma, and the way I “use” (for want of a better word) the diagnosis will be very very different. It’s going to take quite a long time to work out how I live my life from now on and I’m going to have to continue to learn about autism, how it affects me and my life, and how I can best utilise my skills and compensate for my impairments to maximise my quality of life and productivity in the future. I’m already starting to adapt strategies that I’ve used for many years while coping with anxiety, depression, and bipolar disorder. I’m refining my notion of spoons (do read about Spoon Theory if you’re not sure what I’m talking about) and have already started to think in terms of “sensory spoons” and “social spoons” (thinking this way makes it easier for me to work out how much energy I have available for different sorts of activities). I’m considering how I can adapt the mood diary, which I’ve kept since my diagnosis of bipolar disorder, to include things relevant to autism – maybe how my various sensory systems are behaving, how good my executive functioning is, how exhausted I’ve been, what the state of my speech has been, how much my stimming has differed from whatever my “normal” turns out to be, and that sort of thing. I’m already certain that receiving this diagnosis is a positive thing and, although things are very difficult at the moment, I’m confident that they will eventually be easier as I adapt to my changed circumstances.

However, I was not the only member of my family who received a diagnosis last week. And I now have permission to say what it was that threw me into such a state of shock when I was told about it just six days after my autism diagnosis. I’ve been very much keeping quiet about it until I had explicit permission to mention it because we very much subscribe to Silk Ring Theory in our household, so as far as my autism diagnosis is concerned, I’m at the centre of the ring and I get to decide how to handle it and what I disclose. But somebody else’s diagnosis is entirely a different matter. However, this other diagnosis has affected me very significantly, and I hope that those who read this blog who are closer to it than I am will understand my need to mention it here.

A few weeks ago my father went for a routine health check with his doctor. Nothing very exciting – as far as anybody knew at that point he was a reasonably fit and healthy man in his 60s. Some blood was taken for a blood test, and when the results came back they were rather alarming. He saw a consultant just a few days after I received my autism diagnosis and received his own diagnosis – of advanced prostate cancer, which his consultant believes in his case will “see him off”. He then spent the next few days breaking the news as gently as he could to those of us who are close family members – my stepmother who was at the appointment with him, my mother, my brother, and me, followed by a few others. The prognosis is not fully known at this stage. There will be scans and histology and maybe biopsies (I’m not really very knowledgeable about all this stuff – though much more so than I was a few days ago). Current estimates vary between 12 months and (a “very slim chance”) 5 years (although there is always the tale of the outlier who survives much longer against the odds – it would seem that absolutely exact predictions are not possible). There will, obviously be treatment options discussed and weighed up, but the news that my father, who we’d sort of assumed would follow my grandfather into his late 90s, might well not reach 70, is a huge thing to absorb. My whole family is in shock, and my stepmother is in for a particularly hard time, for reasons it is not my place to write about here.

So, my life has been turned upside down yet again. My priorities are changing rapidly. I had hoped that after my diagnosis had sunk in, one of the effects it would have would be to go through some of the difficulties I had as a child, and also, particularly, some of the problems I’ve had with my father through my adulthood – many now obviously caused by undiagnosed autism and communication difficulties. For every event I’ve had with a boyfriend (such as that described in Mysterious Argument) there have been a dozen similar incidents with my father. I recall one from my late teens where we’d had “a fight” about something and I couldn’t explain any of it and I kept opening my mouth to speak to try to say something and couldn’t (I realise now that it was a nonverbal episode following a meltdown). There have been times throughout adulthood where communication has failed and not knowing I was autistic has meant that we have been unable to understand why things kept going so badly wrong. I was hoping to have years to go through all of this stuff and to be able to get back to the times when I was a younger child and my Dad was basically my hero, the one who was like me, and got me, and we could settle into a more comfortable relationship than has been the case through some of the more difficult years of my life.

But that now has to happen soon. I am already making plans to go to visit (he lives some distance away) and my brother is trying to work out how to organise things so that I can manage them. Considering I’m only managing to leave the flat around once or twice a week at the moment, it’s going to use a very great deal of energy. My father is, predictably, handling the whole thing by learning, and researching, and finding out all that he can. He’s taking a very practical and philosophical approach to it all. Exactly as I would have expected. One of the other reasons I’ve been silent on this blog for much of the week is that all my communication energy has been taken up communicating with my family. I spoke to my mother on the phone (she’s the only person I usually speak to at all on the phone, so that was reasonably smooth), and also to my brother (my words started to fragment somewhat, so we’ve now returned to e-mail), and my father and I have exchanged e-mails with things we hope to do together over the next few months. I hope I can find enough of the right words to say the things I want to say and to make some good memories for after he’s gone, because through all the difficulties and so on, he’s still my Dad and…

My reactions this week have been, maybe, predictable for someone six days out from an autism diagnosis. I described in Sensory Reaction how my system initially responded to the overload in my head. My husband worked only part of Monday in order to keep an eye on me, and to try to make sure I ate. Monday I basically felt completely numb. Tuesday I spent almost entirely dissociated, with no hope of any sort of functioning at all. By Wednesday my words were fragmenting and disappearing. Only yesterday afternoon did I regain any semblance of functionality, and it’s still very very brittle.

In a perfect world I would still be processing my autism diagnosis at this point, but the world is very much not a perfect one. I am, however, trying to use my father’s diagnosis as information to guide my actions (just as I take inhalers for asthma and just as I am learning to adapt my life to living a way that works for me as an autistic). I am rethinking the things I need to do in my life over the next few months and will be trying to find some sort of a balance that gives me time with my Dad, time to keep myself as well as possible, and maybe works out a way to leave some other parts of my life available to me in some form in the future. There are things I can simply drop for now and pick up later (they’re the nice easy ones), but there are some things that might not make it through because I simply can’t manage them and the option to continue in the future isn’t there. That’s just the way it has to be. Life happens and priorities change.

Diagnoses really do change lives – in all sorts of different ways.

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.