Two horse buggy: learning to drive the double horse team of autism and ADHD

I don’t profess to know anything about driving a horse and buggy but I watched someone demonstrating how the other day and it struck me as an apt analogy for life with autism and ADHD. The older and more acquainted I get with myself, the more I come to realise that a tug too hard on one rein can be to the absolute detriment of the other so its a fine art learning to steer that buggy!

There are many areas of my life where autism and ADHD seem to be in a push-pull contest with each other with “interesting effects (I won’t go into them all today) but let’s take for instance, that old chestnut, the many “social challenges” equated with autism. Well yes, I have those…but (I’ve also come to realise, I also stim by having (positive!) interactions with people and, checking back to met childhood diaries, I always have done since what I so obviously got from certain friendships, from the busyness of school and from family visits was exactly that. Though I am an introvert, without that certain fission you can get from being around other people from time to time and sparking with them, I can really fall flat in my energy and I now associate that with my ADHD. In fact, I suppose there may have been a time, when I was younger, that I stimmed from any kind of interaction with any kind of people, without so much discernment, as long as it was stimulating to me (which could explain how I spent so many years hanging out in some dubious places with some very unlikely friends) but, since my spoons have steadily run out over the years, that’s really not the case.

Increasing awareness of my autistic shortcomings when it comes to forming successful long-lasting relationships combined with an ever increasing propensity towards rejection sensitive dysphoria based on years of crashing failures and feeling left out or treated differently because of my “alien” neuroptype have veered me, concertedly, towards the need to stim through positive interactions and those, as we all know, can be difficult to find. I guess the upshot of that is, with such very poor odds of finding interactions that are both neurodivergent friendly and positive, I have largely given up on socialising as a form of stimulation and yet…here’s the thing…the need for stimulation is pivotal in my personality type, not just as a preference but as an actual driver of good health (as in, a direct and much needed source of dopamine and serotonin) and herein lies the difference, compared so anyone else who just “enjoys” being sociable or takes it for granted. Yet, the sting is, due to my autism my track record of finding or sustaining this isn’t that good and I have a lot of year’s track record of being labeled “weird” or being sidelined when I relax into being myself.

So what does this kind of duality look like on the ground and, in particular, what does it look like when I come across a “positively” stimulating social interaction? Well, ideally, it involves finding people with interests in common (since, akin to most people on the spectrum, there’s nothing like a special interest to light me up) and then I’m away like a race horse from a starting gun and forget the buggy!

Take this weekend, when I found myself at a vegan festival and came across a stall run by the people who make my favourite chocolate in the world and suddenly I was deep into the most animated conversation imaginable with these two people, so much so I attracted curious people to their stall to see what all the excitement was about and came away with numerous free bars on top of all those I bought for my Christmas stocking. Its fair to say, those people and myself and my family had a brilliant, animated, no holds barred conversation about our shared passion for vegan food, for well made no refined sugar added chocolate and how far such products have evolved lately and so everyone had a great time. There was none of my typical need to comb over what I just said or feel uncomfortable or embarrassed in case I overstepped some invisible mark, said or did the wrong thing or made a fool of myself. Instead, it was smiles all round; and there were numerous such conversations that day everywhere we went, because we were following the trail of our interests as a family unit…and, in my family, we all share such similar interests and passions.

In fact its been an unusually people-filled weekend as we’ve been away at a Christmas market in one of the most popular destinations at this time of year but as most of it was spent in the company of close family, who share not only similar interests but also similar processing modes, I’ve been completely in my comfort zone and its all gone extremely well. We kind-of form a bubble as we transport around in all the crowds and then, whenever we detect other people with interests in common, such as at a stall or in a particular coffee bar, we flower out of ourselves and the unit of interaction grows bigger for just long enough for everyone to get some positive vibes, together.

As well as being a passionate vegan foodie, another typical domain in which I could expect to have such an experience would be at an art or craft exhibition or at a music “gig” or anywhere I get to talk about neurodiversity openly; again, sharing special interests does more than half the work. What I also feel is so important to add here is that, when I have just engaged in such social interaction and its gone reasonably well, I am far more likely than at any other time to gaslight myself into thinking “you’re not really autistic Helen…you can’t be” but, really, this has been one of the pitfalls of this autistic~ADHD duality in me because its helped to keep me in total denial that I was autistic for five long decades of my life (when I might have done far better to own up to the fact). Only once I was able to recognise that socialising can be a sort “stim” for me was I able to begin reconciling that I can be both autistic and (to a certain point…with limitations discussed below) really sociable, both at the same time.

In fact its fair to say I have had to have more engagement these past four weeks than in a very long time due to “project house” as mentioned previously. A series of people having to come to my house for various meetings or to carry out work lately has resulted in me “just having to” cope with that autistic no-go zone of dealing with complete strangers wandering about in my personal domain, messing up or challenging my precious routines and scrutinising my inner sanctum. Please also bear in mind that I usually live like an absolute hermit for months on end so this was a very big deal for me…and yet, again, because this is all to do with a project that means such a lot to me, I was perfectly OK with it. At times, when those people coming through were more than alright to deal with (and I was particularly selective about the company I chose, making sure we were on a wavelength, because of this need), I noticed how I was distinctly “vibing off” having them come around and enjoying riding on that same animated flight of fancy I already described, which only happens when I get onto one of my pet topics or passions. These people were truly interested in my world and the interior I’ve created so I was able to be confident, a little bit more self-possessed of my artiness and quirks than usual and to dare to let my genuine love of good conversation, humour and enthusiasm out of the box to “just be me” at my best.

Afterwards, in fact for several days in between these highly necessary meetings, I felt more “vibey” and alive and animated than usual (like after a great pot of caffeine or a good belly laugh), and much more so than in my usual life, when I tend to languish in a state of chronic fatigue and a whole lot of health issues so much of the time. It really made me realise how much my somewhat necessary retreat away from the world because of my “neurological differences”, my hyper empathy towards other people and very high sensitivity to environmental factors, all of which have got much worse over the years, feeds into my health issues and sense of isolation, which presents quite the conundrum because, most of the time, I really can’t deal with being around a lot of people or subjected to so much sensory overwhelm and yet at another level I need it.

By contrast, there was a day when someone came round to the house for one of these necessary meetings and she was clearly not interested, her energy, voice and very demeanour was flat, she was really not invested in being there at all so my energy and enthusiasm suddenly went as flat as a pancake, as though to mirror her, from the very instant she stepped through the threshold. In fact, I went from feeling positively anticipatory (expecting another great meeting) when I opened the door to utterly depleted in such a split second that it told me a great deal about how one of my neurodiverse traits is to be able to “read” the energy and unspoken responses of the other person even before they open their mouth. This, of course, is in direct contradiction of the stock opinion that autistic people are unable to read social cues; we may not be so adept at reading some of the social behaviours (glances and tones etc) that are learned and then used as an unspoken sign language between allistic people in social situations and to which we seem to be somewhat “blind” because we don’t employ them ourselves but we are often supremely good at reading the truth of the matter and what isn’t being said beneath the surface of all that projected social nuance.

So, whereas I had been so into the conversation on all the previous days that the meetings invariably overspilled and everyone seemed to want to keep talking for longer as I was at my absolute best, I couldn’t wait for this one to be over. Instantly on meeting this woman, I felt so weary to my bootstraps I could barely summon any variance in my voice so that whatever I said (though it was really the same tour as on previous days) became flat and automatic, there were long silences and things quickly became awkward and laboured. Again, this told me so very much about all my years of really struggling with some people yet being animated with others; I can be like chalk and cheese with different people and it all comes back to having to have some sort of innate connection from the outset…I simply can’t fake it, at all. Of course, she may have just been painfully shy or even on the spectrum…but this goes to show how only chasing after engagement with other autistic people is not necessarily the key to me and could lead me even deeper into frustration and isolation than if I was able to find more people, of any neurotype, who happen to share similar interests to me and accept me as I come. I think if I was to meet-up with someone who was particularly poor at conversation, I would find it impossibly hard as I don’t have this issue, once I get going, but I do tend to match the other person where they are at; so, once again, ability to make conversation is not something that can be generalised about autistic people.

The stumbling block to doing anything about this requirement for social engagement, in my case, boils down to lack of confidence and opportunity. I also suffer from a combination of poor track record and the fact that I do have genuine social deficits or at least areas where my a-typical model of behaviour works against me in the eyes of others. This poor track record has filled me with very deep-set fear of things going wrong in my relationships and a sort of PTSD when it comes to the likelihood of rejection, exclusion, abandonment, betrayal, being laughed at or belittled or any of the other behaviours that were so rife in the relationship disasters of my earlier decades. From everything I am hearing and reading, these seem to be very typical of the kind of experiences shared by many autistic people of my age and especially women; we have, many of us, been through the absolute mill of relationships by the time we reach our middle years and lost all our confidence, stamina or desire to try again…or it takes great perseverance and resilience to keep trying. If your health also relies on it (and I would say especially so if you realise you actively stim from social engagement) then the need to persist is even greater so it helps to recognise your shortcomings so you can, at least, keep an eye on them.

What I have noticed in myself, in particular, are these kinds of pitfalls:

  • A propensity to open up too much, too soon or to risk to much and be too honest, a sort of heart-on-sleeve approach to friendship that backfires either because the other person is not as trustworthy or open to friendship as I assumed or because my openness scares them off in the early stages. This has happened to me a couple of times in just the last two years; both times, I felt I was following all the clues as to what constituted appropriate behaviour but, after the initial flush of enthusiasm at meeting me (almost as though they found my honesty and vulnerability refreshing compared to other people) my openness seemed to then freak the hell out of the other person once they had had the time to contemplate it further, to the degree they didn’t just withdraw slowly but slammed the door in my face with no explanation. I suspect this is a case of how honesty and vulnerability can unnerve people in a world that does not generally behave in that way…people actively look for ulterior motives which, in my case, simply do not exist!

  • I’ve been masking my whole life so, not only am I good at it but, its very hard to put that mask down. Not impossible…and I’m working on not having a mask at all…but it can be hard not to (subconsciously) reach for it in social settings, especially if there is more than one person to deal with at a time. I can fall into the social “role” that I taught myself for survival so effortlessly that I don’t even see that I’m doing it until I realise, afterwards, that just wasn’t me and it doesn’t feel good any more as it can be highly depleting and unrewarding in the long term. It can even feel vaguely comforting to fall back on the old social personas because, after all, “old me” behaved like this all the time going back to childhood so it has that air of familiarity about it…but it also has a long track record of eroding away my self-confidence and alienating myself from who I really am at the core, leaving me wrong-footed at every turn because if you can’t just show up as yourself it takes huge effort to handle every situation that presents and you always have to stay somewhat on your guard. Not only does it feel inauthentic and fake to live like this but it’s deeply exhausting, taking up far more spoons than I presently have and the clue to when I have been doing it is, how much has socialising taken it out of me and how many days does it take for me to recover? In this next phase of my life, I don’t want it to be like that; I simply want it to be me as I am and without the constant requirement to modify or obscure my natural responses. This, of course, is no small ask and will take meeting some extremely accepting people.

  • Related to masking, I unwittingly mirror people, which can be a precarious, if occasionally useful, trait to have. A bit like when I met the woman whose energy instantly drained me, I seem to size people up and match them without even thinking about it, even to the point I start to adopt their way of speaking, their pet phrases, their hand gestures, their accents…you can imagine how badly this can come across even if, in another lifetime, it could have made me into an impressionist comedienne. I’m also sure it could have helped me if I had wanted to be a salesperson as it can put people at their ease to be met by a version of themselves. I feel pretty sure it has something to do with the need to mask to survive when I was younger (by becoming more like the people I was forced to mix with, I was less likely to be annihilated by them) but it also has a lot to do with hyper empathy (feeling “as if” you are the other person due to hyperactive mirror neurones, which is a form of synaesthesia) and is also related to that oft reported autistic trait of feeling as though you lose your sense of identity around other people. In a phase where dropping the mask and simply “being me” at all costs is the objective, the effort it takes not to fall into unconsciously mirroring other people can be immense, like having to swim upstream against the urges of your neurobiology which have (after all) evolved this particular mirroring trait as a survival mechanism.

  • The hunger (from years of starvation) to be liked “just as I am” without the need to pretend or squirrel parts of myself away can lead to hyper fixating on how things are going and on every response I get back, which can lead to more exhaustion and dysphoria…and I am not in the market for stoking those fires. Every long silence or less than effusive response file with dread that I may have done or said something wrong. If I could just socialise without having to feel so hyper vigilant or like I am having to tread on eggshells then I feel sure I would engage more often but the reality is that it comes with an over-eagerness to succeed, the tendency to overthink and take things personally and a whole lot of other reasons to feel generally more anxious, which is not something I need to invite back into my life. I never invest lightly in my friendships and it often feels like I care far more than the other person; or perhaps I have more at stake as friendships don’t come that frequently. This does not make for a very level playing field!

  • Related to which, loneliness is never so much of a problem as when you flag it up against the backdrop of various failed attempts to engage; because, when you make your life extremely insular by choice, it is far easier to avoid feeling lonely than when you are trying to make a go of relationships and they don’t work out. Loneliness can be a very real and prevalent issue in autism (as is widely reported) and I’ve had my unfair share these last decades, so when opportunities come to flower open into some sort of engagement with another person, and if I start to trust it, I can make myself more vulnerable to its effects if that effort then backfires. I saw this happen a lot in my mother’s life; she would try “too hard” and the rebuff would come back at her so painfully and for no other reasons that I could ever see except that she was “different” and thus people mistrusted her openness and enthusiasm. This and many of my own experiences have taught me to be wary and, truthfully, wariness can be a useful thing to have when you are neurodivergent and not wanting to stoke the fires of the almost inevitable backlash into loneliness if it doesn’t work out. Over time, I see how I have tended to cut my loses and stay very aloof and independent. You certainly don’t risk it all for a casual relationship (and since small talk and triviality tend to annoy us, this also deters passing efforts at friendship).

  • As above, I can be really good at being sociable when invested. It’s almost an intellectual pursuit when I get onto that hobby horse (whatever the pet topic) since I am a wordsmith and love the feeling of getting into a flow. I particularly love clever humour (which is a classic neurodivergent thing). I can be deadpan and irreverent, I like to engage people with a gripping yarn and to make people lighten up, see the funny side or forget themselves for a moment. I love to surprise them and make them think outside the box and can be pretty good at it too; can turn a “quick” meeting into “here we are, an hour and a half later” with people hanging off every word, if I’m on form and they’re open to it. All this sounds positive, right? Yet I can also get it completely wrong, missing social cues and thinking they’re genuinely interested when they’re not, I can overshare (as above) to the point of cringyness and I can really bore people rigid with my special interests when what I engage in is less like conversation than me standing on a soapbox (to quote my husband). When I’m into a groove I’m sometimes not so much into hearing what the other person has to say as not being interrupted lest I lose my flow, which is a genuine concern for me as I easily forget what I was about to say. I also interrupt, over-talk and finish sentences that are coming out too slowly for my liking (I’m notoriously impatient), can get dogmatic and did I mention I can be far too blunt and speak my mind without filters. I can think of at least one “close” friendship where I’ve been unceremoniously dumped for having some of these traits. All of this is a lot to deal with…it makes social engagement a loaded gun to wield around with you, never knowing if you will hit the target or injure somebody. I then overthink and over-worry afterwards (oh how I can comb over and over a social engagement for hours on end) far more than the average person in a way that sounds horribly similar to what I am hearing from a lot of neurodivergent women sharing their experiences.

  • Burnout is a very real risk from socialising! There’s no getting away from it, being social is not the natural domain of an autistic person, especially when it comes to group behaviours and crowds, so all of it runs contrary to innate preference and takes immense effort from the need for extra forethought, enhanced concentration during the act and then thorough recovery afterwards. After a few days of this, I’m not only burned out but sensorily crashed-out as though all my nerve endings hurt to the point I can’t bare a single drop of stimulation until I recover. My digestion stops working. My body becomes rigid. I’m fatigued to the very core. I have dysautonomic issues (with temperature regulation, blood flow, all those everyday kind of everyday things). In short, everything just stops working…and has to stop for a few days of reset. For weeks on end, I have thoroughly overdone this social thing and my ADHD neurology has stimmed itself into a pretty good place (because things have gone pretty well) which is an interesting thing to observe in light of my now fully recognised autism, however I also notice my physical body is yearning for a ceasefire and I have to accommodate both of these urges in equal part in order to maintain the semblance of good health. Remember, pull too hard on one of those reins and one of my team of horses is likely to turn us straight into a ditch, a risk that has increased exponentially as I have got deeper into my middle years (another trait I am hearing from a lot of neurodivergent women). I have to keep in mind that, for all of the above reasons, when I socialise (even if it is going well) I am also having to work extremely hard beneath the surface the way a duck’s legs never cease paddling like hell beneath the waterline however serene they may seem to be above the surface. It all takes extra vigilance, additional effort, to do what other people take for granted when you are neurodoverse (comparable with speaking a second language in a room full of natives) and is the very antithesis of relaxing…even though allistic people often consider socialising to be the very definition of relaxing behaviour. For me, with my ADHD, it is still the antithesis of relaxing and that’s why it makes such a worthy stim!

  • Cold turkey is a very high risk. As just mentioned, the fact that being social is not relaxing, that it contains the ingredients of high adrenalin or buzz-factor, effort and then the potential for reward is why it can be so usefully stimulating for me as someone who quite likes to socialise (I have come to recognise) and yet also why I can’t do it all the time as above, but also for another reason…I can’t abruptly stop but, rather, have to wind it down gradually as though weaning myself off a highly stimulating class A drug or else I will fall straight back into chronic fatigue or my body will try to hook onto something else to stimulate itself (not always the best kind) and this can have all sorts of detrimental effects as I have talked about before. You could say, in hindsight, my years of chronic illness could have been a version of extreme “cold turkey” caused by the body simply having to stop everything all at once due to burnout but then the complete and sudden withdrawal of stimulation having other highly detrimental effects on my health; not least the lack of social engagement, or variety, or excitement, or novelty…feeding back into the chronic state of illness due to lack of even some of the positive stimulation I natural crave. In my recovery plan, and in the recovery of anyone with chronic health issues who is also neurodivergent, I would say you have to look into the part played by stimulation in your best health and work out how to get just the right amount, from the most positive sources, rather than avoiding stimulation altogether as your recovery may rely on it. This is exactly what I am doing as I envision a somewhat more sociable future (on neurodivergent terms and without trading away my authenticity) and its not all about social engagement as there are many positive ways to stim. Today, I’m easing myself into being far less overstimulated for the next couple of weeks by, paradoxically, stimming gently by writing this blog!

In summary, though they often feel like they are a pair of wild horses head-bumping each other rather than having any prospect of pulling together, these two factors of my neurodivergence have equally important parts in my life, necessitating a sort of see-saw arrangement that keeps me at my healthiest via neither languishing into boredom or solitude nor completely overdoing things or submitting to overstimulation to the detriment of my health. Its taken me a long time to learn this extremely crucial thing about myself but I suspect it will serve me well for all the rest of my days.

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