AuDHD and Me
By Shane Pinnegar
Today marks four months since I received my official diagnosis of Autism and ADHD (unofficially AuDHD for short).
I had suspected I was on the autism spectrum for some time – years, in fact – but it’s not something I was really concerned about. Maybe I was a little nervous about opening that Pandora’s Box. I was definitely overwhelmed by the concept. But even in that I never for a moment thought I would also have ADHD, not up until the discussion about testing began in earnest.
The personal research I did before testing, over the past maybe five years and especially since early this year, was almost exclusively focussed on Autism, and what that might look like in me. In the past five months, though, I’ve widened that search radius to include ADHD and realised something which even the medical fraternity are still working out: that AuDHD is a different and unpredictable beast.
But I’m getting ahead of myself…
The more I have learnt about AuDHD, the more I have been analysing what it means to me, how it’s affected my life and relationships and decisions and… well… my everything.
I’ve read a lot – and I mean a LOT – so much so that a lot of it refuses to retain in my brain, which is why I share relevant memes and posts, so I have a reference later on. Unfortunately I’m not academic enough to recall everything at a moment’s notice, but I get the big picture.
I’ve thought back to old jobs, old girlfriends, old friends… to my travelling days, to school, to growing up in what I often thought was a somewhat dysfunctional house… and I’ve identified a lot of instances where my decisions were made or my actions taken which were entirely fuelled by my Autistic brain or by my ADHD brain – or, arguably more often, by the constant argy bargy between the two within myself.
The internal conflict exists because Autism really wants routine, structure, safe haven, comfortable surroundings, a detailed plan and no surprises. But ADHD craves dopamine constantly – it wants surprises, thrills, chaos, no script to follow, even danger sometimes.
Boredom is an anathema to ADHD, so it constantly sits on your shoulder like the cartoon devil suggesting you do the unexpected, maybe even throw grenades into the mix to make things interesting. In me that often manifests as cracking jokes (often one step over the line), trying to crank up the excitement level of anything we do, even trying to be the centre of attention sometimes. All of which goes completely against Autism – which wants the safety and comfort of relative anonymity and – if not boredom exactly, then a routine we understand in advance and which we feel in control of. Control is hyper-important to Autism.
So, all the time – ALL THE TIME – we’re at war with ourselves. One side of us is constantly clashing with a diametrically opposite side. Put even more simply: either my Autistic side or my ADHD side is usually disappointed by what the other is making me do, which as you might imagine is incredibly frustrating.
[As an aside, frustration is a huge factor in AuDHD – we’re not bad tempered or aggressive per se, but frustration at being misunderstood, at not being able to make ourselves more clearly understood, at little things going wrong, at life going off track or not adhering to the script you’ve imagined in your head… it all adds up and often manifests in a way that makes us appear angry or aggressive or unreasonable or tantrum-prone. We don’t mean to take it out on anybody – most often we are directing that frustration back at ourselves, even though it can appear to be sprayed outwards.]
Worse still is that we have learnt to mask this stuff to some degree from a young age. It’s the only way we could fit in as children, avoid family or friends or teachers calling us out for being awkward, difficult, problematic, ignorant, vague, attention seeking, troublemakers, lazy, and so much more – not that it works much, as we got all those incorrect labels and many more.
[Another aside: we WANT to function at a high level but it’s like our brain is our enemy sometimes. At times we literally cannot find a way to start a task, even a simple one or an important one. We are prone to completely work at the last minute. Or we can’t finish tasks: we get halfway through then our brains freeze like a laptop buffering. We’re not trying to cause problems for others or ourselves, or to be difficult – our brains just won’t do what they are supposed to do – which is why I refer to it as being “mis-wired” a lot of the time, like a computer with a loose connection that glitches regularly.]
We learn to mask to try to appear ‘mostly’ normal. That can be successful to different degrees. Often we just seem weird because we’re trying too hard. But if we successfully mask sometimes, then that can make people who see the difficult times – the times when the world is too loud or too bright and we’re overstimulated and go into executive shutdown, or the times when we are bored and get mischievous to spice things up a bit and because we’re inherently socially awkward we maybe go too far – as us being wilfully problematic.
And then there’s the burnout, where the constant battle in your brain becomes so exhausting that you simply shut down and switch off. When that happens most people just think you’re being vague, or rude, or worse, but it’s a far deeper thing and difficult to explain – especially in the moment.
As with any invisible affliction, because we don’t have a broken arm in a sling, for example, there’s no obvious signs that the world should be a little gentler with the part of us which is struggling. And because we’ve often masked so well – covered it up in order to fit in, at least a bit – people make no allowances for us at all. They simply can’t see the constant internal struggle. I’m not complaining, just trying to explain how difficult it is, all the time. ALL THE TIME.
When I was young and struggling with this, being called “difficult” all the time by my mother, while she nonchalantly dismissed her friend’s suggestion that I get tested for Asperger’s (old term for level 1 autism), I found more and more ways to mask.
Back then I didn’t understand any of this, of course, so I created reasons for why I was a mess of contradictions – for why I was painfully shy AND gregarious at times; why I was so scared of being the centre of attention in a crowd but revelled in it around trusted friends; why I got so frustrated at things that I couldn’t control; why I constantly sought little wins for the dopamine hits or failed to engage with study in any subject I wasn’t truly interested in; and all the rest. I wasn’t making excuses for any bad behaviour (though many thought and still think that was what I was doing), I was making sense of it the best I could for myself. I needed to describe it to myself because then I could understand it on some level and therefore in some small way control it. To my autistic side, a little bit of control is far better than none at all.
So, I’d tell myself I was shy and go along with my friends’ suggestions rather than orchestrate plans myself. I told myself that I was scared of public speaking. I wouldn’t apply for some jobs and instead just bounce from one opportunity to the next instead of admitting that it was the chance of a negative response, a failure, which I couldn’t handle. In the same way, I rarely ‘chatted up’ women, rather created an environment where they approached me – so I dated a few people primarily because they showed an interest. Dopamine was more important than forever, so I also found it hard to say no even when I should have, which made me a shitty boyfriend more than once.
Long before I understood any of this, my ADHD side dragged me into some crazy situations which my Autistic side then had to dig me out of. I called it ‘fun’ but it got pretty irresponsible – dangerous, even – and often chaotic. Someone once quipped: “You get us into more fights than anyone, Shane, but you always talk us out of them before anything happens.”
As a result of all of this, I spent a LOT of time in my own head, so much so that – even when I had no idea I might be autistic or ADHD or both – I always felt very self-aware, perhaps because of the constant over-thinking and over-analysing and wondering WTAF is going on?! I guess I should clarify that: I was self-aware given my limited understanding. I flew by the seat of my pants, bouncing from one experience to another, largely led by the ADHD and its ferocious appetite. In more recent years, given a terribly abusive relationship, Clinical Depression, acute anxiety and CPTSD response to the same, my autistic side grew more prominent.
Since being diagnosed I feel like I’m finally, properly, self-aware – exponentially more than in the bad old days. I thought I had a good handle on myself back then, but any understanding I had was based on fake news. I get it now. I understand who I am and why I have done stuff the way I have, and why I think the way I do now.
You might think any diagnosis of a condition which can be extremely debilitating would be a negative, but this has been the opposite for me. In finally giving me answers to WHY I am wired the way I am, it has been extremely validating. The diagnosis has allowed me to understand myself, properly, for the first time ever.
I’ve always felt inferior, a failure, unable to do some “normal” things and function at a “normal” level. [not that ‘normal’ has been a huge priority for me since my teenage years. I realised early that wasn’t me. I’ve had a sign outside my front door for years which reads “there’s no such thing as normal.” It’s incorrect: of course there is. It just doesn’t live here.]
I’m high functioning, no doubt about that, and I have had done a lot in my life. I’ve enjoyed amazing adventures, travelled, made wonderful friends around the world, loved, partied, explored hobbies, written books, run my own businesses for close to twenty years – but I never achieved much financial success nor ever, ever, EVER felt that I fit in on a large level. Even with my best friends I’ve always felt slightly excluded, usually through no fault of theirs, just the way my brain reads things awry at times.
To finally be able to see real reasons for things which went wrong, for poor decisions and failures legitimate or imagined, is valuable. To see that people – family, friends, managers, work colleagues – treated me unfairly because in my neurodivergent reactions to what was going on they thought me unreasonable, is valuable. And in reconciling some of these things, I’ve been able to come to some realisations. Perhaps had I been wired more “normally” then maybe that job or that relationship would have lasted, for better or worse. Perhaps I could have found a deeper happiness. Perhaps I may have ended up more financially independent. Perhaps I could have more “normal” friendships – where you catch up with people regularly for social events instead of being shunned a lot of the time for being different/awkward/difficult/insert your own adjective here.
As if all that wasn’t enough, there’s also a tendency to observe things out loud – to say things other people maybe only think or perhaps don’t even notice at all. It’s because if I observe something unusual, I take note of it, because I’m truly interested – I’m not being critical. [though of course some people only want to think the worst of you.] So, because that is unusual, I think it adds to the, “he’s weird, let’s not invite him” thing.
To anyone who ever felt I was being insulting or lashing out: my apologies. I most probably was not, just observing something which seemed interesting or contradictory or unusual or illogical or outstanding or needed clarification, or expressing my abject frustration at myself.
Which leads us to the huge amount of loneliness inherent in AuDHD. We feel like we don’t fit in, we feel “why me?!”, we feel left out, we feel every inadvertent slight upon us like a landslide [Rejection Sensitive Dysphoria, a facet of ADHD, leads us to take any rejection – real or imagined – deeply to heart, sometimes to the point of feeling enormous, crushing emotional or even physical pain from it], so we might withdraw in order to minimise the likelihood of being hurt by being left out, which means we isolate more and more and become terribly lonely because of that.
There’s also the inherent huge sense of loneliness which stems from an entire life feeling different. Because we mask our symptoms from a very young age we feel like we’re faking at life a little – that we are forced to feel ashamed of who we are, what we’re covering up. Shame. Guilt. An ever-present point of difference which cannot help but make us feel like a team of one with no concrete support. At least prior to diagnosis, which in my case was at fifty-nine years of age. That’s a LONG time to feel isolated in some fundamental ways. It damages you. After all, you can’t talk about something you don’t understand yourself, and if you’re so desperate to be accepted, then you keep the manufactured façade up so tightly and for so long that it becomes you. I look back on pastimes and hobbies from years ago and I literally do not know any more if they were things I was truly interested in or things I did in an attempt to bond with family or friends.
As mentioned, since being diagnosed I can say, hand on heart, that I understand myself exponentially better – but ironically that understanding now throws some personality traits and passions I took for granted into question. It’s led to a strange sense of emotional disembodiment, of not being certain about your true feelings and connections, about what was truly me and what I adopted due to masking or attempting to fit in.
I wish nobody had to contend with any of this, but that’s a pipe dream: Autism is very real. ADHD is very real. Both have a collection of symptoms which manifest in clearly defined ways, though because they are spectrum issues some issues may be amplified in different people, whilst some may be far less.
AuDHD is the wild card. Take two disparate things which clash horribly, and mix them with often unpredictable results. Some days I can feel one side or the other is dominant – and that is such a weird feeling. “Today I am very ADHD.” It’s like somebody different driving your brain!
Most days it’s a clash between the two. Structure vs chaos. Calm vs excitement. Peace vs stimulation. Focus vs anxiety.
And I haven’t even touched on the insomnia, or the peak productivity time which is often long after everyone else has gone to bed; the creativity which (for me, at least) often feels like a very a small hop, skip & a jump from madness; the inherent hyperfocus on our ‘special subjects’ (and ensuing possibility that we bore others with them); the fact that small talk sometimes feels like pulling teeth; the financial incompetence; task avoidance due to overwhelm (which is why I am writing this RIGHT NOW instead of doing the other very high priority thing!!!!) leading to Olympic level procrastination; literally being unable to follow rules, even simple ones like take your meds twice a day; inability to manage time properly; inability to exercise sensible impulse control; the ability to notice fifty tiny details most others won’t even see the moment you walk into a room – but still miss the most important thing right in front of you; the exaggerated empathy to the point of distraction; constantly looking for patterns, especially numerical or visual; the forgetfulness; the stimming (fidgeting for stimulation, especially when anxious or uncertain or uncomfortable); the never ending thoughts and conversations and repetitive looping we have in our own heads that make it seem like there’s never, ever any silence, let alone calm; the inattention and lack of focus sometimes; problems with mood regulation; the ever-present thinking that we are about to be told off for something we didn’t even know we did wrong; and so many other things, leading to the overwhelming mental & physical exhaustion due to dealing with All. This. Shit. All. The. Time. There is a LOT to unpack.
The inside of my head often feels like a circus – random conversations vie with snippets of song lyrics revolving on repeat, synapses spark with crazy brilliant impossible ideas, memories keep popping up without relevance, and it’s like three carloads of clowns tumbling about in front of a bunch of performing animals and magicians while a crowd heckles constantly.
And all the while we lose friends and partners like we have hot dinners. We’re too much or too weird or too full on, or don’t contact someone enough because we are isolating or because we honestly believe contacting them will be annoying to them or we’ve inadvertently crossed some line by saying something we thought was a simple observation but they took offence at, or for a hundred other reasons.
Before I wrap this up, I’ll address one more thing: to anyone thinking, “Yeah, everyone is a little autistic/ADHD” or “I have many of those symptoms, therefore I am as well,” I encourage you (or those you care for) to get clinically tested if you think you might be Autistic and/or ADHD – if I had understood myself better, or if those around me had, from a far younger age my life may have turned out very differently. It is VERY important to note that whilst many of these traits/symptoms may seem relatable to most people, the best way I have read it described is that with neurotypical people they are a thing which might happen casually now and then… with neurodivergent people, these things are hard-coded compulsions. Things we cannot control, are compelled to do without even realising, have no way of addressing at times. The difference between neurotypical and neurodivergent is perhaps the same as saying, “well I cough sometimes, therefore I must have emphysema like that person who coughs all the time.”
I feel extremely grateful to have been able to finally be diagnosed with Autism and ADHD. It has answered so many questions for me, cleared up so much confusion and corrected so much misunderstanding for me. What it has not done is stop that clash in my brain – nothing can do that.
It has allowed me to mask less, which has taken a little pressure off. It has allowed me to realise when I am getting overstimulated, or frustrated, or beginning to shut down. So, sometimes I can sidestep some of that by taking a time out. Sometimes I can articulate what’s happening a bit better – especially with my very understanding and tolerant wife, thankyou honey – and work through it quicker or better or more reasonably. I can remind myself, “this is an AuDHD thing, you are not useless.” That is incredibly valuable, and I wish I had all those tools many years ago.
Overall, I think I am calmer. Not totally calm, of course – hahahaha, no: ol’ mate ADHD wouldn’t like that! But MORE calm. Less in search of the next massive dopamine hit. Knowledge is power, after all: if you understand what you cannot do with your broken arm in a sling, then you will be able to protect it from being bumped in order to avoid damaging it more or causing more pain. Likewise, by understanding AuDHD on a tiny level I am able to avoid some of the pitfalls inherent in those conditions and avoid a little of the pain that comes along with all the above.
I want to stress that this diagnosis is not a ‘get out of jail free card.’ Acting like a dick is still acting like a dick – and I’ve been a dick more than I like to recall. I do feel most of that is due to AuDHD triggers or traits, and a little understanding would have gone a long way – but that doesn’t fully excuse my behaviour from time to time, especially in the bad old days. What this all comes down to is REASONS, not excuses.
I doubt I will ever fully understand what this all means for me – there is so much going on that it’s daunting – but even the small amount I have learnt has been extremely helpful, as detailed above. At least now I can sometimes recognise when my moods flip, when anxiety starts to build, when problems start to occur, and take preventative measures. That’s worth its weight in gold.
As long as this essay is, I could probably write another twenty the same length, delving into different facets and traits and difficulties of AuDHD. Maybe I will sometime. For now, I needed to summarise where my own journey of self-understanding has brought me.
The main thing is that now I’m at the point where I am able to articulate what it all means for me [and realise that what it means for me might be a little different to anyone else with AuDHD, because it manifests differently in us all – no two cases are exactly alike, which just adds to the frustration and difficulties being completely understood], so perhaps this article will help others with Autism and/or ADHD who are confused as I was, or neurotypical people interested enough to better understand how this works. Through understanding comes compassion, and the world needs that more than anything else right now.
