So, on an unforeseen impulse, I’ve suddenly decided to go after a formal autism diagnosis, prompted by finding a service that describes itself as offering a respectful and sensitive assessment for late diagnosing women, now added to my resources page in the menu above (I had long since given up on finding a sensitive female-presentation informed route that I felt comfortable with and performed by an autistic woman but this may be it). At the time, I wasn’t actually looking for an autism assessment but for an autism affirming counselling service (something I periodically scout for as something currently missing from my arsenal) which the same person offers, but when this also came up I got goosebumps and just knew that it was time. A whole lifetime of highly traumatising chronic invalidation had made me understandably wary until now but this felt so right I made an almost instant decision and set the ball a-rolling.

So I’ve just spent what has been an extremely sedentary week, due to not feeling well, hyperfocusing on filling in an extremely detailed pre-assessment form which took three days of deep self-enquiry and memory dredging to complete, since which I have followed up with a long list of add-on recollections and notes fired off in an email. It may sound like a contradiction to say that I have been unwell yet still tackled this gigantean task from my sofa but I always crave a mental hyperfocus when forced to be sedentary so this was just what I needed to take my mind off feeling shitty and shutdown and most of it was just a case of jotting down thoughts that I was already having. Also, if I had ever thought that I wouldn’t have enough “evidence” for my own autism assessment I was clearly very wrong!

Of course, it has been cathartic to sit down and write it all down and just so many pennies have dropped, so many dots have joined up and its still all falling into new formats in my mind. In fact I would go as far as suggesting that, even if you don’t feel like you need or want a formal assessment, it’s still worth writing down absolutely everything you can possibly remember from your life that would seem to support your conclusion that you have autistic traits because it has been an amazingly powerful tool of self-awareness, self-forgiveness (none of it was ever my fault) and reconciliation. My mind is still sparking and throwing up new levels of insight and understanding and I’m pretty sure this will continue on for quite some time, perhaps forever. Its helping enormously with gaining a sense of where I go from here.

I’ve also been spending a lot of my down time listening to the Audible versions of two highly recommended books, Rediscovered: A Compassionate and Courageous Guide For Late Discovered Autistic Women (and Their Allies) by Catherine Asta and Unmasking Autism by Dr Devon Price as well as catching up with the most recent series of The Squarepeg podcast, which I hadn’t listened to for quite a while (and I’ve just rejoined its Patreon group).

In other words, I’ve been in an autism deep-dive, and with all the same intensity as the time period between first realising my own autism back in 2019 up until a couple of years ago, right before we moved house, when I was pretty obsessed by the topic. It hadn’t really occurred to me until now that I had let my obsession move to the sidelines lately but, between the move, getting long covid and then my focus being on chasing an Ehlers Danlos diagnosis, my attention had been taken offtrack for a couple of years. Suddenly, I’m right back in the heart of it again, finding myself at every turning which, combined with starting the assessment process and going through my whole life with a fine tooth comb, is making my autistic traits feel even more present and undeniable than ever….

Which is tantamount to saying “I feel more autistic” this week than I did last week because I am seeing it in myself so very clearly now!

Conversely, when I didn’t allow myself to focus on autism all the time, as was the case for the past two years (not a conscious decision made but perhaps made subliminally because I knew it wouldn’t be all that helpful to hyperfocus on the traits that would make it exceptionally hard for me to cope with the whole sensory onslaught and sheer wanton destruction of routines that selling up and relocating to a different part of the country via several temporary abodes would involve) then, yes, for a temporary time, I stopped accommodating my autistic traits again, not quite as much as before I worked out I was autistic but my autistic self-care certainly went down a peg or two over that time span.

So what’s the answer? Is hyperfocussing on your autism, in order to achieve a very high level of lifestyle adaptations and accommodations, the only answer but will this automatically make you feel “more autistic” than you used to do as a biproduct? I guess the inevitable answer is “yes” but then (on the reverse side of the argument) dropping that focus or even ignoring your autistic traits doesn’t ever stop you from being autistic; it just leaves you terribly unaccommodated and unsupported so why would you ever want to do it?

During those two years of highly distracted focus, it’s fair to say that I took my eye off the ball again (not completely because I couldn’t “unknow” that I was autistic anymore but) sufficiently enough so I could push myself through the MASSIVE amount of unavoidable overstimulation and disruption, the frequent “peopling” and the masking that relocation demanded, none of which I could strategise out of my life to make it more comfortable or accommodating because I just had to get through it somehow to get here. Yes, it was a very big push and, now I am on the other side, life is a much better fit with my autism than its ever been in my adult life but there was a hell of a lot of damage done to my nervous system along the way and that took one hell of a price in the aftermath as I fell into all the health consequences.

So many of the anecdotes gathered for my autism assessment have come from examples, taken from the past two years, of how sensory overstimulation and high normalistic demands can lead to frequent meltdowns, shutdowns and burnouts in my life!

So which reality is the real one, the one where I normalise successfully enough to move house and otherwise do all the stuff that looks like having a relatable life (through the eyes of other people) but with terrible outcomes for health, or the one where I am fully cognisant of my autistic traits, meaning that I accommodate them so much better but also inevitably meaning that my life looks much more withdrawn, carefully curated and (yes) autistic by default?

Take today, when I am meant to be at a big family gathering (not an easy thing for me to attend, for reasons I don’t need to explain to my autistic readers) and, though I was intending to go anyway, I’m really not well as I mentioned above so I won’t be going after all. A decision that, I can tell you, has sunk like a lead balloon with those I am letting down but I’m increasingly running out of the neccesary stamina to keep trying to explain, in relatable ways, why I can’t manage to do certain things that normal people do all the time or to jump myself through all the hoops of feeling guilty. I’ve inevitably dragged myself through the mire, since making my announcement, for being a let down and clearly disappointing other people but (on the eve of my assessment) should I still be allowing myself to feel like this over things I simply can’t help?

Of course, everyone I know has an anecdote for how well I’ve managed to join in these kinds of things before and how happy and sociable I always seemed in the past but they don’t they know the half of it. They have no idea how much I was always having to mask, all the prep that went into it, the aftermath and shock waves through my highly sensitive nervous system as I swept up the pieces. No, I’m not a horrible, antisocial person, I’m just autistic!

Whenever it comes to finding a reason they can relate to in any of these situations, even that isn’t ever a simple thing to do and comes out sounding like I’m clutching at so many different different straws when it comes to excuses but there really is no clear-cut reason why I feel way too “off” to put myself through a social event today when I’m still feeling so fragile. Sometimes, when you’re autistic, it just “is” that way and people need to be able to accept that at face value, no neurotypical style excuses (ableism at its worst) required.

For starters, I have overlapping complex chronic conditions that frequently wrong-foot my health, no provocation needed and, right now, my dysautonomias are going haywire (which a crowded overstimulating space would make so much worse). Additional to that, I’m still in massive shutdown mode from last week’s Big Event (daughter’s graduation) the overstimulation of which I shared in fine detail on my last post. Truly, I’ve been feeling utterly shattered and undone by that three days of near relentless overstimulation and then a few days aftermath of still having visitors and social demands so I’m not sensorily recovered by any stretch. Right on the coat tails of that, I seemed to come down with some sort of virus early this week, which is very likely given all of the human contact I’ve had, in fact whatever it was behaved so much like covid, intensely attacking my nervous system first, that I actually ran a covid test but nope it wasn’t but still pretty awful and I’ve been floored all week. I strongly suspect (having freshly run through my life bio as seen through an autistic lens…) that my body generally responds to a viral attack according to how desperate it is to shut me down and withdraw me to quiet places.

So I’m not going today but, even then, I’ve had to mask a bit to politely get out of and, since the “virus” excuse is more relatable (and palatable) than sensory shutdown, that’s what I’ve inevitably gone for; not that I’m feeling so sensitive and shutdown that all my nerve endings hurt, that my brain fog is so intense I’m in a constant snowstorm of vision blur and (apart from my hyperfocuses) unable to string a sensible thought together and that I can barely make conversation with my husband (unless I’m monologuing on autism…) let alone 12 other adults in a small room. They won’t get it, which isn’t their fault, but the sooner I stop expecting them to the better I can start to feel, at least within the boundaries of my own self-created world. At least with an autism assessment in my hand, it might take me less words to say “no” in the future.

In fact, isn’t this whole susceptibility I have to my health so spectacularly crashing to do with the sheer overwhelm and sensory onslaught that inevitably comes my way from repeatedly trying to normalise when the body’s resources say no? Having just written up a long list of all the key anecdotes my life, all the other endless meltdowns, shutdowns and burnouts, the patterns seem very clear to me…pushing on through is never good for me, it never has a truly benign outcome, there are always high prices to pay so when will I ever stop doing that for normality’s sake?

Going forwards (with or without a confirmed diagnosis, though reading through my initial assessment forms, now submitted, I can’t see how this lengthy tale of a strugglingly autistic life could possibly fail to achieve the outcome I hope for) which way is this lifelong pattern now likely to go? Can I ever afford to stop hyperfocusing on my autism again (and do I even want to, such is my passion for it) if the risk is that I might stop accommodating it appropriately again if I ever do? The alternative being that I put it front and centre of everything from now on and that my life starts to look a lot more overtly autistic, to me and to everyone. Am I ready for that, is my husband? Then again, surely that’s the whole reason for chasing after the diagnosis I don’t really need to tell me I’m autistic…a “piece of paper” that could act more like a moral support passport or gateway to living life according to the fact of it whilst unapologetically owning it and unreservedly being it like never before.

I will no doubt keep you all posted about how the assessment goes.

Disclaimer: This blog, it’s content and any material linked to it are presented for autobiographical, general interest and anecdotal purposes only. They are not intended to serve as medical advice, diagnosis, treatment or prescribing. Opinions are my own based on personal experience. Please seek medical advice from a professional if you are experiencing any mental or physical symptoms that concern you.