As per my last post, I just went through my lengthy autism assessment yesterday, having previously been through a pre-assessment stage that landed an almost 40-page report into my inbox on Saturday (based off three test results and a whole pile of notes and detailed answers to a lengthy questionnaire I had previously sent in), all the signs of which pointed at a very likely “high level of autism” correlating with what was once known as Asperger’s but which these days is referred to as Level one. Although this was no more or less than I had already hoped for and expected, the report itself made sobering reading as I read such phases as these (and they are just some of the most comfortably sharable parts of the report):

“The level of conscious effort and self-monitoring indicated by your scores suggests that social interactions are likely mentally and emotionally exhausting for you…Your high intellectual abilities and sophisticated masking strategies contributed to late recognition…While these skills may help you navigate neurotypical social expectations, they likely come at considerable personal cost in terms of energy, authenticity, and emotional well-being”. 

No wonder I was burned out before my 40th birthday and continue to experience frequent burn-outs whenever I push myself to integrate with normal social behaviours, usually in the kind of environments which I also find severely over-stimulating from a sensory point of view.

So I know I have been through a lot in this 57 year life of mine but to hear it all put so succinctly in somebody else’s appraisal went beyond validation into the realms of self-realisation for everything I have become as the amalgam of all my experiences, good and bad, along the long gravely road of undiagnosed autism. Here, I think I have managed to nail just one of the many reasons that seeking diagnosis can be such a deeply life-affirming experience, even if not entirely necessary, at my stage of life. I realise that I needed to hear some of those profoundly alienating and lonely experiences reflected back to me through the unemotive and, equally, undiminishing appraisal of at least one other human being beyond my husband. The fact that this was also someone (by the way, her details are now listed under my Neurodivergent Resources heading above) who didn’t overtly “know me” from Eve somehow made this all the more meaningful (since strangers so seldom “get me”…) than if a well-meaning friend had told me “gosh, you’ve been through such a lot” in kindly voice. This person knew what she was looking for and has seen the traits before in countless other long struggling undiagnosed women that have found their way to her door so she was thorough and she was profoundly interested in some of the signs and clues that other assessors (used to diagnosing children and, mostly, little boys) are prone to missing. Somebody had seen me, perhaps for the first time, across the whole course of my life from the deeply discombobulating experiences of early childhood to the road-weary late middle-aged woman that I am now, scars and all.

So yesterday was the face-to-face in which, I was fully aware, I was also being observed closely for some of my physical traits, from the near-continuous stimming I apparently engaged in for the whole interview to the sheer length and breadth of some of my extremely long explanations, complex to a flaw yet here…at least…it was in my favour not to curb or curtail but to let my uncamouflaged self shine through unedited. I often tell myself (or my husband will remind me) before dreaded face-to-face appointments “just be yourself” but here was the first time (pretty much ever, outside of some of my most trusted contexts, mostly inside my own home) that this actually rang true!

Although on Monday night, spurred-on by the contents of the pre-assessment, I did something extraordinarily out of character and joined one of the various late-diagnosed women’s zoom meet-ups that are starting to appear on the internet (this was through author Catherine Asta’s Late Discovered Club), another place where I was explicitly encouraged to “be my autistic self” or what was the point. There were just 5 of us including the host, as it happened, being that time of the year when a lot of people are away (a good place to start) and it felt so extraordinary (once I got past the first ten minutes of feeling like my heart would explode out of my chest..) for the way we got straight into the deep end without all the usual small-talk and social niceties that typically fill up the spaces of polite conversation but which, for us, only ever seem to cause us frustration and to lose our thread. A lot was covered in an hour and it was so oddly liberating to feel welcomed there, just as I am; able to freely discuss experiences that were clearly highly relevant to all of us in various ways and yet the kinds of topics that are normally sidelined or shut down in more typical contexts.

So, back to my assessment, it was long but (my fear beforehand) I was never once lost for words plus I managed to share, in surprising sensory detail, numerous social and situational memories across the whole course of my life that I had barely given a thought to myself until prompted and yet there it was, evidence by the spade-load of a highly autistic childhood into adulthood, a continuous thread, equalled only by the high-sophistication of my masking compensations from a very early age, fuelled also by precocious reading and a lifelong habit of closely watching other people’s behaviours. In fact I became so good at hiding my differences away that I even fooled myself for the first 51 years and now it was in plain sight…for both me and for my assessor, who had no qualms at all confirming her first appraisal that I am very highly autistic (nothing borderline here) by the end, her report to follow. In fact my autism traits are so present that, if I do have ADHD going on (as I suspect I do but not her remit to tell me) my autism traits tend to heavily dominate and, if anything, ADHD has merely helped me to mask my autism all the more in certain situations and eras of my life where its traits have been more assertive, which is much as I suspected since having both can make them each the harder to diagnose.

So, by the end, how did I feel: was I ecstatic, sad, even a little angry at all the wasted years of struggle? Really, I was and still am feeling a little bit of all of those plus some other as-yet unnamed emotions I have yet to process. Yes, I felt exhilaration on a par with gaining top A level grades, yes I spontaneously shed a few quiet tears even though I was still on camera, yes I did what I normally do when something exciting happens and talked all the more rapidly for the remaining ten minutes. I thought I would feel flattened and depleted by the end of such a long process but my first impulse was to celebrate by going off for a spontaneous late lunch with my husband who hugged me and looked relieved that I had finally received the validation I had been so-long seeking yet finding so evidently hard to obtain. Back on Saturday, my first impulse on getting the pre-assessment was to want to shout it from the rooftops (code for “announce it to everyone on facebook”) but thankfully something stopped me and I assume that was the ingrained knowledge that it really isn’t safe to be so free with this information, certainly not with everybody and in all scenarios of my life without careful consideration. This is something my assessor reiterated yesterday..to take it slowly and be discerning about who I told, why and when because not all reactions would be all I would like them to be. So I told my two closest friends and both of them responded in all the ways I would have hoped and more (whilst I couldn’t help running in parallel, in my mind, how many of those door-slam friends I had lost along the way, for reasons mostly related to my “different wiring” now I look back in hindsight, another trend of my life, would not have been so understanding or kind…so, no loss really). Anyone new that comes along will need to be comfortable with my autism before we even start.

Because autism isn’t something to be ashamed of, it’s just different and we all know how negatively so many people respond to “different”. For those of us at Level 1 it’s generally not such a disability except within context of a highly overstimulating world that is not made optimum for us to function in, designed by people wired very differently to our preferences. Given how severely messed-up the world is right now, I wouldn’t say there are any grounds for anyone to claim the current way is any better than how we neurodivergent folk might likely prefer it to be in order to better meet our sensitivities! Then, of course, everyone knows somebody who has a child, grandchild, whatever that is autistic so comparisons inevitably get made, assumptions drawn…either that you are like them exactly or that, because you don’t seem to be like them at all, your own diagnosis is void or even insulting to their relative. As the saying goes, if you’ve met one autistic person you’ve met one autistic person… A “piece of paper” may or may not help with such situations but ultimately how that person reacts is their journey, not mine. My biggest dread of all is being infantilized by anyone I entrust with this diagnosis and it would be a sure sign for me to step right away!

In fact, one of my biggest “problems”, inherent in the high degree of masking I was able to perform when I was growing up, was that I was gifted and extra mature for my age (my assessor is of this opinion) and most often developmentally ahead of, not behind, my peers (also, my observational skills of normal behaviours were clearly very sophisticated; I was reading adult books at an early age, helping me to absorb all the ways I was expected to behave, and there was very little that I missed in my quiet studies of human norms from the sidelines of all the childish behaviours I didn’t fit in with). So my teachers invariably left me alone, seeing me as exemplary and presuming I was more than coping with everything, not for a moment guessing that I was struggling. They would say things like “if only more of my pupils were like you”, self motivated and eager to do well because I was there to learn. However what they didn’t see was the severe sensory distress I was experiencing in a noisy and chaotic school context or ways I was being manipulated by my peers, one in particular who spotted my differences early and leaned into my constant propensity to be so trusting and to repeatedly forgive because (a common autistic weakness I had) I never could seem to grasp how underhanded some people could be or the degree of their malevolency. I fell into the same pattern with my first husband, who was emotionally abusive, also with somebody else I considered a “friend” for 4 years who abused me in my own home, all because I didn’t pick up on the signs or, you could say, recognise any of the the “subtle unspoken social cues”, that I was being played with. Those kinds of experiences are a major pointer as to just how dangerous the lack of a diagnosis can be and how exposed it can leave a person, even if earlier diagnosis is likely not to have been the greatest thing in the world for me given I grew up in the highly unenlightened 70s and 80s. I was left exposed, mostly, through my own ignorance of my differences and the propensity to blame myself rather than question the motives of others.

As for all the sensory stuff, probably my biggest area of “weakness” (though in some alternate contexts I could imagine, I feel sure my sensitivities could be a profound gift rather than a near-constant source of torture…) I could write you a very long list of all my various sensory peeves, especially having just so recently listed them out for my assessment. Of course we generally develop some capacity to lock some of them away in some sort of sensory safe box with time and repeated exposures (in other words, like developing a thicker skin from aversion therapy, it may be possible to learn to ignore some of the lesser triggers in certain unhelpful contexts…though not always possible when you are this hypersensitive, I have to add). However, when we also have a lot of other things going on, take for instance common co-occurring health overlaps such as Ehlers Danlos, leading to a lot of pain and other symptoms, or going through highly disruptive life stages such as menopause, our capacity to keep on doing this becomes more precarious until our override tactics may one day go all-to-pieces, as happened to me around 15 years ago and especially over the last 7 or so (corresponding with both menopause and my self-diagnosis of autism, quelle surprise). I long ago wrote another post on the topic of how menopause “broke” my autism.

These are some other stark differences from norm in my case, including the constant gravitation towards detail and complexity since my mind is never “off” and runs complex dot-to-dot threads of information all the time, which makes shrinking that down into relatable small talk in the living moment of some verbal social interaction near enough impossible to achive or incredibly tiring if I manage it. It’s like having to constantly translate from one language to another, which is never a slick process and even harder under pressure. So no surprise, given that, I also have a very strong preference for written communication over verbal because it allows for more complexity to be processed in a much more considered and usually non-linear way (my mind being more like a spiral…), and offers much more time and opportunity to process and to think everything through. This writing preference thing is especially common amongst us autistic women it seems, which made Monday’s zoom call all the more remarkable as many of us were not in our comfort zone but it worked because we weren’t being wrong-footed by the more typical styles of verbal communication or constantly being thrown off our train of thoughts, nor were we being scored on our delivery (which sometimes seems to hold more sway than content in some typical contexts…) either!

As for getting diagnosed, I’ve pretty much known for sure that I am autistic for 6 years now (and once I suspected it strongly, I read every book, listened to all the podcasts etc. to gather all the comparisons I possibly could; I’d previously had no idea there was a difference in presentation in older women that have learned to adapt, mask and camouflage so well, for decades, that they have even managed to fool themselves) so you would think that this really wasn’t such a big deal but it is. The best I can describe it is that its like stepping fully through a doorway where I’ve been hovering in the threshold for a very long time, with one foot in and one foot out and that door left open creating an unnecessary draught on both sides. Pennies are continuing to drop all over the place now I have the diagnosis, of course, which will be an ongoing process of increasing self-awareness, reframing and integration from here, but I am also detecting a subtle increase of strength where, before this, I was always being wrong-footed and sometimes rendered vulnerable by the expectations and judgements of neurotypical life, so that has got to be a huge benefit.

To elaborate on the essence of something I read this week, I am a freshwater fish that has been forced to swim in the saltwater sea for far too long, to the point of severe abrasion to my physical body and very nearly the point of personal extinction from being in an unknowingly unsupportive environment, at the most intrinsic level, and yet all it would take is the right kind of water for me to be able to thrive just the same as any other fish to be found swimming along through its life. Knowing what kind of fish I am, what that water looks like and where it can be found is the first crucial stage.

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.