It’s been over 4 years now since the year the penny finally dropped that I am autistic. This time 4 years ago, I was still deep into all the fact-gathering, reading every book I could find on the topic, or at least the best of those written by actually autistic people, as well as diving on every conversation I could find on forums and podcasts, especially those relating to later-diagnosed women. There was a point when I began to wobble again, a few months later, which I guess was sort-of inevitable as it was such a lot to take in and there were times when my imposter syndrome caught up with me. Even with those kinks in the process of coming to terms with it, its still clear to me that pretty much everything changed from that point onwards, four years ago, because nothing could ever really be the same again once I knew and started unpacking what being neurodivergent (had always) meant to me as a lived experience. It was a slow and steady process of unpacking every experience I had ever had through different eyes and arriving at some really powerful reinterpretations of things I had really struggled to reconcile or make sense of up until that point.

That’s because my whole paradigm had shifted, pretty-much overnight. So many of the things I had assumed about myself and my relationship with the world turned out to be so distorted up until that point that it was like having a warped lens drop from my eyes. I suddenly realised I wasn’t that (insert terrible or broken thing) person, I was just different. Hardest to take in of all, I realised I had been running blind for over 50 years, drawing wrong conclusions left and right, not even beginning to grasp the disadvantages I was trying to compensate for every single day and all the many things I assumed were really messed up about myself, including my apparent lack of success in any kind of “normal” career,  or my long-running difficulties maintaining friendships, in spite of my obvious intelligence and friendliness. There were some real dark nights of the soul as I came to terms with all this but, looking back, it was the beginning of a pinpoint of light starting to appear on the horizon and that light has steadily intensified and expanded since. Just so many things have now improved for me that it feels like a good time, towards the end of another year, to share some of them, because it’s all too easy to focus on all the hardships and trauma of autism and even my own posts can sound geared that way at times. Those things are important to comb through, not ignore any more, yes but we also need to keep our eye on the upsides of realising something so vitally intrinsic to who we are!

Only the other day, I posted on the topic of trauma related to autism and its been a hot topic for me in the past few weeks but not because I am feeling extra-taumatised lately but, on the contrary, because I’m really noticing areas where I have tended to be traumatised, to do with autism, and how those old traumas still influence my emotions and decision-making to this day if I don’t shine the spotlight on them. This is an important distinction to make; and it’s a key reason why it can be just so important and positive to realise you are autistic…if you are. Before you realise, all you tend to know is the outline of your autistic self, as in, the shape that is left where you don’t fit in with other people’s experiences or expectations. It’s a bit like drawing a portrait of someone by filling in the background and leaving a space where the person is standing; what they call a negative space composition, in art terms. You get to know what you aren’t…but not what you are. Such an approach tells you a lot about all the misfitting bits but nothing much about yourself and that, in itself, can be a source of ongoing trauma because it can leave you feeling like a blank. This last four years has been a process of filling in the blanks for me!

Now, I’m really starting to grasp the difference between what is an autistic trait that I have and what is a trauma response (and the two are not the same…). I am autistic, that is a given and its also a positive because I exist and therefore that cannot be wrong; I just happen to be made the way I am and that’s a good thing, not something I should be apologising for. However, traumatic responses are a reaction to something outside myself and, in particular, they tend to be (old) reactions to how I have been received as an autistic person, or, the way that the allistic world has previously made me feel because of its reception of me…for instance, unsafe, left out, not seen or heard, odd, weird, stupid etc. Those experiences in my past have left wounds, which have fed into certain learned behaviours, however those behaviours are not “autistic traits” but the result of a less than ideal reception as an autistic person, often made worse by the fact that I didn’t know I was autistic myself, meaning I was also drawing all those wrong conclusions about myself as above just as much as those other people were getting me wrong. Now that I know the truth of the matter, I can not only start to see places where my behaviours are based on trauma (not autism) but also start to unravel them and, in seeing them, I am starting to help them to fall away or at least become less severe or influential in my life. In a sense, I am finally able to take what I need from those old traumas (because I wasn’t able to do this at all until I was finally able to work out the truth of where they had come from and so learn from them…) and let them go, which is not to deny them but to allow them to be less ever-present in either my consciousness or subconsciousness, where they have had a tendency to lurk.

It’s hard to describe but there has been a sort of “ironing out” of the kinks in my experience; I feel more level, more grounded and much more whole now I know and fully accept myself as neurodivergent. Another way of describing it is that I feel like I’ve found something I mislaid years ago, perhaps once I started comparing myself with other people and noticing how the way that I am is not always understood, related to or accepted. Its like going back to the happy oblivion of earliest childhood when I was perfectly content to be me, only, I am no longer oblivious but fully aware of the way I am wired…but also, importantly, fully accepting of it.  So, there have been a lot of areas of improvement these past four years, some of them too nuanced to easily share without giving you far too much detail about my life, but I’m going to try to list some of the main headings that I’ve noticed.

Perhaps the biggest area of improvement has even that I have noticed myself developing far more confidence, and also far less inclination to apologise for myself (the two go hand-in-hand). As I think my last year of shaking up my whole life has been testament to, I’ve been far braver about making life-changing decisions, challenging the status quo of my routines, taking the plunge and also (a big one) going out and about into situations that are highly stimulating or challenging to me as an autistic person…however, doing so mindfully and with a high degree of preparation and self-support…because there is a big part of me that relishes positive stimulation from music or being in cultural, often crowded, interesting places.  Before “I knew”  what I was dealing with, I had become so overwhelmed by sensory overstimulation and wipe-out overwhelm in public, challenging places that I had become pretty much a recluse!

Now I know that my sensory processing differences are to do with my autism, I feel far less daunted or afraid of them…they just are, and there are measures I can take to mitigate them but I am no longer prepared not to have a life because of avoidance. The same with all my autistic foibles…I’ve learned that autism is neutral (as in, neither a deficit nor a superpower), it just is and its a case of learning all the ways that I am apparently different to other people, specialising in those differences, since I am the one who has to learn to live with them, and then advocating for them, or making them comfortable, as far as possible; just the same as everyone else is busy tending to their own interests and needs. I know I have some real strengths to do with my autism whilst some things are harder to deal with, though mostly (I am finding) in conflict or contrast with the way the world has been set up with the interests and preferences of neurotypical people in mind. It’s my job to work out how to advocate for improvements in that regard or learn to live with my differences as best I can.

In tangent with this is a sort of refusal to “give up and go home” building up in me and thus more preparedness to say yes to things, to be a little bit spontaneous, to be prepared to give something a try and, if it doesn’t work out, speaking up about the ways that I struggle or making an earlier exit but at least I showed up for a while. With most people (not yet all…) I am prepared to just blurt out that I am neurodiverse these days and then, if I have to, further explain that I have issues with certain things, for instance that I need to be in the quieter corner of the restaurant or that I need a break-out room. I recently asked a hotel I was booking not to put me in one of their flowery rooms as I would find the frilly yellow and red floral curtains and bedding all too stimulating, as a result of which they kindly and without fuss relocated me to a lovely alternate room with monochrome fabrics and simple furniture lines, which made all the difference. I also now carry a hidden disability card which allows me to ask for accommodations without a great need for spoken words at all, which is so useful at times when I am feeling too overwhelmed to deal with all that. I’ve notified my bank and the electric board that I am autistic and may struggle on the phone or need extra time to process my responses, especially when going through security ID checks, so they have this note on the file now. The main point here is that I am prepared to put my hand up and own my autism or at least the challenges I have because of it rather than suffer on in silence as I did for decades!

I notice I am scripting what I say to people far less. I still noodle what I am going to say around in my head a fair bit if I am about to talk to someone new or if I want to make a particularly good impression but this is no longer a full-time occupation and I am more relaxed about either taking a back seat until I have assessed the situation or just taking the risk of being more spontaneous, even being lighthearted and funny, which has allowed my quirky sense of humour to come out with far more frequency and with some pretty good effects lately. Looking back, I used to come across as a bit too blunt, a little too earnest and serious and probably more than a bit unstoppable because, once I had my speech prepared, I just had to get it out of me, come what may. Now, I am able to enjoy much more fluid conversation, interrupt far less and keep my pace much more relaxed, more responsive, more enjoyable for everyone and it’s all because I have become so much more aware of the pitfalls of my social style combined with other peoples’ style of communicating that I am better able to steer around the differences to meet in the middle.

Related to this, another big improvement is that I’ve begun to notice how often I get impatient, because my mind works so fast and leaps ahead of conversations, and therefore, as above, I tend to overtalk people…which at least gives me a winning chance to try and avoid doing this too much (and alienating other people in the process) although its very much work in progress as I can’t seem to help myself sometimes. I’m also much more aware that I struggle with “dead” time such as sitting around waiting for something, the long pauses you get during small talk, even waking up in the night and having nothing to do and so, rather than beat myself up for this, I provide stim toys and things I can do such as an app for taking down notes on my phone (I now write down notes and lists, tagged so that I can easily find them later, of all the random things that occur to me…this post began as a series of notes) or listen to podcasts when there’s an unbearable gap in my day. I love organising and strategising and no longer think this is because I’m a control freak but because its the way my brain is wired, so it really needs something to chew on, dots to join and I now work hard at providing what it most needs (or else it will go off and find something less suitable to fixate on).

Then, if I really struggle or put my foot in it, for instance being too blunt, interrupting someone before they have finished what they are saying or taking a moment to tap something into a device when in polite company, I am far more willing these days (with most people) to inject something along the lines of “sorry, just my neurodivergent brain at work, I lack filters and my thoughts just leap ahead, I lose track if I don’t say what I think immediately or jot things down” (though I still struggle with the need to apologise for the way I happen to be; I’m hoping that people who know me come to just accept these things about me more and more as I continue to be honest with them). There are mixed reactions to this but its part of my authenticity project to be prepared to deliver this kind of information rather than skirt around the issue; plus I also believe that if more of us start to do this, it will be the best possible way for neurotypicals to start getting used to the fact that us autistic folk are literally everywhere and have just as much right to be the way that we are as anyone else!

The hardest people to come clean with can sometimes be the ones you have known the longest, perhaps even family, especially if you feel they are likely to doubt your diagnosis (especially if self-diagnosed which, although we know is perfectly valid, is something other people are often reluctant to accept). However, as I recently came to realise, sometimes our families may wonder what all the fuss is about because they are actually pretty neurodivergent themselves and so  they’re not ignoring or doubting you so much as taking you as you come. Constantly pushing for recognition of your autism can then provoke them if they are not ready to use such labels for their own quirks. I’m also, finally, learning that I don’t need other people to validate me as I start to come out as neurodivergent; its enough that I now know and am accepting of the fact.

Another thing is that I’m also noticing I take things less personally these days, also that my triggered moments are shorter lasting than they used to. Because I wasn’t aware of my autism before,  certain points in my life were a trigger-fest, especially my 20s and early 30s (right before burnout…) and those triggered episodes could last weeks or even months, during which time I would be so highly overstimulated, my mind on constant loop, fixated by whatever it was that was really bothering me. I would feel anger or intense fear over certain situations that was so overwhelming it would take me over and I can see now how much of that was to do with the frustration of not knowing why I was so different to other people, why something really bothered me but not them, why I was left out or left behind though I worked so hard to meet everyone’s expectations. If only I had known…but I know now and it has taken the sting out of a lot of things to reconcile that it’s never too late.

A new perspective regarding what is fearful is a very big area of change for me. When you don’t know you are autistic but all you do know is that you feel different, singled out, isolated, put at some unknown disadvantage and so horribly overstimulated by environmental factors that no one else seems to pick up on, your whole nervous system goes into fight or flight most of the time and you constantly expect worst case scenarios to unfold. Now, that whole effect has dissipated to a very large degree and my system has really calmed down. I can now rationalise my sensory differences (and deal with them as best I can…) because they are no longer an assailant of unknown source but to do with my neurodivergent wiring, plus I am no longer magnetised to all those catastrophic endings or obsessed with the odds being stacked against me because I am better able to orchestrate better odds by picking and choosing my preferred circumstances. Yes, I will always be that person that runs every possible scenario through in my head in advance, that’s just the way my autistic brain works (not a trauma response…) and I can’t help that, but I don’t always default to imagining the most negative outcome and am much more able to glean the more reasonable, middling kind of outcomes that won’t have my nervous system on high-alert even before I go somewhere!

Another plus point of less catastrophising or thinking ahead is that I now manage to stay much more present, not only with myself but with other people. I look back and grimace at how un-present I often was when I was with other people before “I knew”, even if they were telling me something, including my daughter when she was growing up (that makes me particularly sad to think back to as I was often distracted by things I was hyperfocusing on) but I am finally able to compensate for this by becoming much more available to people and situations as they happen…specifically because I now realise I have this propensity to wander off in my head  or leap ahead to the next step. These days, I make the extra effort to stay put and now gain all the benefits of far better quality time, making for far stronger memories of places we go to and pleasant situations we experience (which so-often used to pass me by as if in a dream before) and so actually reaping the benefits of having the kind of nervous system that picks up on all the nuances of a situation, all the finer most enjoyable sensory details, taking in all visual impressions that I can and then I can recall it all much more clearly later. 

I do recognise very strongly in myself this need to plan ahead, to have strategies, even to fill up all my time, as I really don’t cope well with amorphous stretches of time, they can really mess with my head and my sense of wellbeing (although chronic health issues have kind-of forced them on me). The kind of day when I am not able to do anything much can be extremely distressing or agitating to my mental health as it feels wasted, like I have nothing to show for myself and have lost something…so, knowing this (and where it comes from) as I now do, I have learned to find things I can do to engage myself, even when those amorphous stretches of time force themselves on me. I guess its a kind of stimming, and may typically involve listening to podcasts or brainstorming lists that later turn into blogs as I mentioned before or it could be engaging in repetitive or highly focused tasks on my computer…whatever it is, it now keeps me from the brink of hopelessness, whereas before I knew what my kind of brain was like, I would sometimes force myself to take compete rest days, or suck up boring days, as so strongly advocated when you have chronic fatigue or burnout (even when most burned out, I tend to need something, even if its just an audio to listen to, that keeps my brain occupied). In other words, I have got a whole lot better at curating my particular kind of a life and avoiding some of the surprise pitfalls (after all, who else doesn’t like a complete rest day?). I have to keep in mind that I am also ADHD so the need for stimulation can get pretty intense if denied, so I have to watch out for things like impulsive spending or overindulgence.

The same goes for working with my strengths and letting go of some of the things that are never going to be in my range, so no point in kidding myself. Rather than limiting me, this has somehow expanded my sense of possibility as I find there are even more juicy areas of experience or creativity that I long to explore, knowing full-well that they will appeal to my particular neurodivergent foibles and strengths (many of them to do with my particular sensory traits such as love of music and colour, of pleasantly tactile things and beautiful form). These aspirations are entirely particular to me so no point sharing them here but I guess the big thing that has occurred is that they are no longer filtered or funnelled by mainstream aspirations, as fed to us all by peer pressure, advertising outlets and social media telling us what we should be “into” at certain ages. I know that my best life is going to emerge by more deeply exploring my neurodivergent leanings, not by flicking a magazine to see what other people are doing with their spare time!

There’s nothing like realising your traits are not some arbitrary foible or flaw specific only to you (since you never before found anyone else with them…) but, rather, something shared by loads of other people for helping you to appreciate them all the more. In particularly, I have been enjoying all the ways that having highly tuned sensory abilities enhances my experiences of life. Whether its witnessing a sunset like it’s a transfiguring event, enjoying a full body experience from listening to live music, picking up tingles from the positive feeling in a room, more intensely experiencing “normal” sensations in my body, deeply tuning into animals and nature, pricking tears of joy when some minor thing transports me to another place or time or any one of a myriad of highly intense sensory experiences I might have in the average week, I intend to enjoy it all; not damn it all because it comes in the same package as sensory experiences that sometimes greatly aggravate or overwhelm. As before, autism is neutral and comes with its highs and lows but if I try to focus on the highs I get a much better experience out of it.

Another new development related to this: I am now freely allowing my depth of processing to be there; its who and how I am and not something to be suppressed, belittled or shut down. As well as causing, I guess, “more pain” than some people tend to experience (which is why other people may try to advise you to stop allowing this part of you to run free if you have it…they likely do so from the best of intentions) it also makes my experience of life so much richer and is such an intrinsic part of me that not to allow it is to trim my own wings in order to become more “normal” and I’m not prepared to do that any more. When you have this propensity to fly very close to the sun you are always going to get a little bit scalded as well as enjoying all the intensity and exhilaration of the flight; the two come together as a package, but I feel I now have to shut down all the internalised voices that tell me its better to be more mainstream in my focuses in life and to be less into everything with such passion. Intensity if my middle name and I don’t ever do things by halves; when I feel it or love it or want it I do so with ever fibre of my being. I can particularly hear my parents cautioning me to not let my imagination run away with me…but then without the free rein of my own mind, which is naturally inclined to wander wide and free, poking in all the corners, joining dots, wandering about things, then who am I? It’s one of the plus points of lacking synaptic pruning to be this way and I intend to make the most of it.

I guess a major improvement is that I now feel valid just as I am. Before I realised I was neurodivergent, it felt like I was always having to apologise for, underplay or hide the way things really were for me, so unrelatable were they to all but a couple of people that I can think of and, of course, my mother but I lost her so early in life that it was a huge milestone in my sense of isolation when she died. My daughter is now my main confident on all points to do with neorodivergence as we are just so very similar and relate all along the way, which helps both of us enormously, but I also know she has also found one heck of a massive resource in the form of social media posts from people wired similarly to us, in fact it has helped her to self-diagnose and to navigate all the many challenges of being a young adult at large in the world which (at her age) was the oh-do demanding stage of life that utterly defeated and floored me, getting me into all sorts of scrapes, so I am beyond grateful that these kind of resources now exist!

In fact, finding other neurodivergent individuals to connect and share resources with has been one of the most positive outcomes of all. Lived experiences of neurodivergence hold real power for other people going through similar experiences and seeking information that hasn’t been devised by neurotypical “experts” and thats’s a big reason why I share what I do here; which has rocket-launched a whole lot more motivation in me to keep me writing since its my particular way of connecting with others. I almost can’t imagine how I managed to navigate my own life, at all, before I began to seek out and immerse myself in real-life accounts of autistic and ADHD experiences described by other people that, at last, sounded so similar to me, something which had eluded me all my life. Honestly, it almost brings me to tears to my eyes to consider how impactful this one single positive factor has been for me as I had honestly spent most of half a century feeling pretty isolated and cut-off by the uniqueness of my own experiences.  Finding other people that sound so familiar when they share their experiences has helped to validate some of my own experiences that I used to doubt, deny or squirrel away out of sight as though they were too weird to face up to. Through comparison, I’ve been able to identify some of my weak spots and adopt ways of better filling in for them, which has allowed my life skills to tailor much more exactly to me (not to some other type of person that I will never become) which is one massive upgrade.

Coming back to that original point, connecting with people who “get you” just as you are so that you don’t have to feel all alone is so important but I’ve also been able to realise that even that connection might not look like it does for a neurotypical person. My version of connecting isn’t necessarily being in a big group of friends, meeting in-person or needing to talk to people daily; it’s having the support system of relatable podcasts, social media accounts and forums I can dip into on my terms, even if I don’t want to say anything or engage most of the time. Honouring that, allowing that this preference isn’t wrong or weird or antisocial, has been so important and, because these kind of communities (and they do still feel like communities to me) are relatable to me, I don’t feel so isolated any more. 

Last but not least, I now notice far more efficiently those times when I’m trying to do more than it is possible for me to do. I recognise when I need things such as accommodations. I recognise the early signs of burnout (my most challenging autistic traits such as sensory issues become more prominent). I have strategies for getting what I need just in time, before I tip over that edge. I set far more appropriate expectations in my diary and also better boundaries, plus I also remember to do what it takes to uphold those boundaries (since other people can’t be expected to relate to why they are so important to me so its down to me to advocate for and safeguard them). I don’t fall for being gaslit, manipulated or simply not heard out like I used to do. There is a resiliency to me, now, that was lacking before.

There are loads more positives I could list but I would be here all day writing about them if I didn’t make myself take a pause, although you can be sure I will share more along the way. The above topics feels like some of the main points, at least for me, and its really helped to shine the light on them this morning; I hope its been uplifting or encouraging for some of you too,