As per requests, this is my description of auDHD experience. As there is very little research into this, I'm going to draw primarily upon my own personal experience and I'll draw upon peer experiences and I'll draw in bits of research through this post here and there. I am diagnosed with both ADHD and autism, both adult diagnoses, and there is treatment history to establish these as being accurate diagnoses. The psychiatrist who diagnosed me with ADHD gave me a diagnosis of primarily-inattentive ADHD but I had come to my own conclusions that I was probably combined-type which has had its hyperactive aspects mostly buried under trauma. My psychiatrist also independently arrived at this same conclusion unprompted. It's worth noting that being combined-type will colour my experience of auDHD.
As a disclaimer, this is going to be my experience so it will be limited by that fact. This should only be taken as information and not the definitive guide or the be-all end-all of The One True™ auDHD experience.
To start, I think it's of fundamental importance to understand that my experience of auDHD is one of internal conflict - I have competing sets of needs and desires. This manifests in a lot of internal struggle and it also means that my autistic or ADHD traits can be more prevalent and I can feel "more" autistic or ADHD, depending on my circumstances. (Maybe I'm a Marxist because deep down, at a fundamental level, my ADHD traits exist in a dialectical relationship with my autistic traits lol.) This manifests in a lot of extremes and a lot of bouncing between one extreme to the other.
Ultimately this is why I think I was previously diagnosed with a mood disorder and why it's very common for late-diagnosed autistic/ADHD/auDHDers to be misdiagnosed with mood disorders.
So what does this look like in practice?
I thrive under most novel situations and under high pressure. I find it exciting and this really engages me. However, I also find that I hit my limit in high pressure situations very rapidly, so there's a sweet spot where things are just new or high pressure enough that I thrive. Less, I feel pretty bored and checked out. More, I become an anxious wreck.
However this is counterbalanced by my deep and abiding need for stability, routine, and structure. I need enough that I can count on in my life that I feel capable of dealing with high-pressure and novel situations. Too much change, especially unpredicted change, leaves me really rattled and out of sorts (and not just feeling a bit uncomfortable but it can put me into complete disarray). It can take ages for me to cope with too much change or unpredicted change because, although I can be quite adaptable and flexible, if my base circumstances change then the pace at which I find my feet again is truly glacial.
This is also sort of why I find that I am either extremely well organised or I'm an absolute disaster, with little room in between. Without having structure and organisation, my autistic needs aren't being met so I feel very dysregulated and I am far less capable of relying on this aspect of myself to manage my scatterbrained ADHD traits.
When it comes to socialising, I can be very gregarious. (It's worth mentioning that I'm pretty high-masking when I want to be, so that may also be a factor here.) I am capable of being the life of the party and of facilitating stuff like group work and educational spaces in an engaging and interactive way, and have done so professionally. But this comes with a high level of social anxiety and an extremely limited social battery. I find that I much prefer facilitating, or better yet public speaking, than I do participating in a group activity especially if it's unstructured or there are a lack of clear guidelines and expectations. So externally I vacillate between being very social to being extremely introverted, depending on a variety of factors.
Another aspect is that I genuinely do need a lot of time to recharge after socialising, even when it's great and I'm really enjoying myself. Sometimes days. I feel like this is very much my autistic needs taking the front seat.
With regards to interests, this is a little bit tricky on account of being combined-type but I have very long, stable persistent deep interests ("special interests" but I am loath to apply that term to myself tbh). I also have the classic ADHD sort of brief, intense, transient interests that breeze in and breeze out just as quickly. There are things that I will always be interested in doing or talking about, then there are things that I have a sort of wild fling with before I find that I've suddenly wrung all the dopamine out of it and I'm ready to discard it and move on.
I'm capable of bending my deep interests and sorta redirecting them to topics that I need to prioritise but I'm not sure whether this is a me thing, an auDHD thing, a combined-type thing, or something else.
With regards to sensory processing, I am a fairly typical autistic scattershot of being mostly sensory-avoiding with some atypically high degrees of sensory-seeking, as per the Dunn Sensory Profile 2 administered to me as an adult. I am acutely sensitive to a lot of sensory input however my ADHD is a countervailing force here and I can be completely oblivious to certain sounds or smells or tactile feelings until suddenly my awareness is drawn to this and it becomes borderline intolerable. This may also be due to me being high-masking, having poor interoception, or experiencing dissociation due to lots of trauma, mostly developmental so keep this in mind.
With regards to trauma and rejection sensitive dysphoria, there's evidence that ADHDers are more prone to developing PTSD symptoms. In my opinion one of the major factors in this phenomenon is the fundamental emotional reactivity inherent to the ADHD experience, especially if it's not appropriately medicated. My autistic traits lead me to ruminate a lot and so there's this unholy alliance that exists within me of my being more prone to traumatisation, having heightened emotional reactivity (even with regards to PTSD triggers that occur well after a particular event), and the classic autistic perseveration meaning that I get into ruts with my thinking that are very difficult to get myself out of. This is on top of the typical experience of PTSD and being emotionally and psychologically "stuck" in the traumatic experience. So it's a double whammy. Or maybe an exponential whammy idk.
I experience rejection sensitive dysphoria and I respond to treatment for it. I think that RSD in an auDHDer is especially difficult as being autistic means that I am just prone to making more faux pas, I'm going to unintentionally annoy or upset people, I'm going to miss cues, and ultimately that I'm going to face a whole lot more ostracism and social rejection than if I were allistic. So not only do I have a lot of the psychological consequences of trying to exist in a social world that is far from well-suited to an autistic person, I also have very visceral responses in my nervous system when I think I have fucked up or when someone gives me the impression of negative social feedback (whether imagined or real) and this has a pretty major impact on me. I am of the opinion that the ADHD traits that make me inclined to seek out social interaction and push me to be novelty-seeking means that I am much more socially engaged than I would otherwise be and since negative social feedback affects me unusually deeply, I think this is one of the major factors in why I am capable of being very high masking to the point of probably doing quite well at being neurotypical-passing if I care to.
It's my suspicion that most auDHDers are high-masking, not only because they tend to go undiagnosed and maybe even unaware of this personally for a lot longer and so they naturally develop strategies to compensate but because they tend to be more socially-oriented and I reckon they take knocks harder when socialising, all things being equal, so the end product is a person who is a sort of grizzled veteran who has learnt how to survive in the harsh wilderness that is the allistic social realm.
Moving on from that, I find that I am very extreme in how I experience fine details. I often plunge headlong into the deepest depths of detail but I am also quite careless and I can miss very obvious or critical details. I tend to shift between these two poles. Sometimes this also manifests in being so consumed by one aspect of the details that it's to the exclusion of all the other details as well, although that's more of a classic autistic experience imo. This might also be something specific to me but I am a voracious learner. Often I feel like my mind is like an odd-couple where I can get engrossed in a subject for virtually an unlimited period of time and I can be remarkably persistent with learning but I also have intense cravings for instant gratification and novelty which causes me to end up diving into one subject with great depth only to dive into the next soon after, and this pattern repeats itself constantly. It feels like half of my brain is constantly dragging me down one particular rabbit hole and the other half of my brain is desperately and impatiently dragging me to the next rabbit hole. This may also be something specific to me but I find that I'm actually quite a slow learner because of my needs to understand the intricacies of any given topic but, once I really grasp the fundamentals of something I tend to learn very quickly from that point onwards.
With regards to executive dysfunction, my experience is one of constant struggle lol. I feel as though I am constantly juggling too many balls - my need for novelty, my need for certainty and stability, my sensory diet, the need to stay focused and remember things, the need to observe the details so I don't make simple mistakes and so I don't find myself getting lost in any one particular detail, my need for routine and my fundamental incapability of maintaining a routine, attending to my interoception as I am very liable to not register that I'm hungry or thirsty or tired and so on. It feels like I am more or less constantly mediating the tensions between my different needs which often exist in direct contradiction to each other. So yeah, this means I burn out and I burn out hard lol.
I think ultimately my experience of auDHD is one where I can sometimes spot the very clear traits of either one shining through, such as struggling with pragmatics in communication and being completely capable of eating the exact same thing in perpetuity or being so forgetful and inattentive that I'll put my phone down in a drawer only to close it to later have zero recollection of what I did and having a real drive to experience new things. But more often it feels as though I am an odd mix of the two or that there's a sort of stalemate between the two and I feel like I'm kinda neither and yet both at the same time.
Sometimes this works really well, as my ADHD traits make me more adaptable and a bit more even in my interests and how I engage socially or as my autistic traits help me sustain my focus and to have a much better memory for things than I would otherwise have. I guess in short, being autistic keeps my ADHD traits more stable and consistent and my ADHD makes my autistic traits more flexible and it broadens my horizons. Each of them softens some of the rough edges of the other and I find that I can often lean into one in order to compensate for the deficits inherent to the other.
Unfortunately, the upshot of the autism and ADHD combo is that very often these needs compete and are in direct contradiction to one another as well. It's a weird sort of in between space to exist in, one where the only relatable parallel that I can think of that comes remotely closely is ennui - that feeling of being bored but where it's a conflicted or maybe a more existential sort of boredom; if you're just purely bored, you find something interesting or exciting and you have fixed the problem and the need has been addressed whereas with ennui there's a sort of restless interregnum-like quality where you experience a feeling of boredom but the thought of doing something exciting is also in itself boring somehow. That probably doesn't make a lot of sense lol. Also for my experience of auDHD it's not a feeling of being bored at addressing different needs but it's more like craving new things whie simultaneously craving the same things and the same routine, of craving excitement but also being overwhelmed and craving quiet and calmness at the same time. It's really quite odd to be honest.
Ultimately, while I identify with a lot of traits and experiences of pure ADHD or pure autism, I feel as though my experience of these are much more varied and they shift in intensity. I also think that the way that I present, even if I'm not putting in effort towards masking, is one where the traits of both are apparent but they aren't easy to pin down because I readily switch between, say, a classic autistic infodump monologue to being very socially-engaging and mischievous like you might expect from an ADHDer. Or I can be incredibly details-focused while also being seemingly oblivious to details. That sort of thing.
Anyway, I think that wraps up my own personal experience of auDHD from an internal perspective.
This sounds exactly like me, and now you've convinced me I have both as well lol. First I thought inattentive adhd, then after stimulants it was clear I had autistic traits. The stimulants burnt me out so hard (and guanfacine made me sick) that I was convinced that they didn't work for me because I have actually been autistic this whole time and not ADHD. Otherwise the meds would have worked, right? So I've been talking to my therapist about my autism. But every single thing you just described is like you read my mind. Now what?
(also do you have any advice for how to get a routine going? I think that's what I need the most right now.)
I'm not gonna lie, there was a part of me that felt concerned that everything I wrote in this post would be unrelatable and all specific to just my personal situation, that other people would be like "The fuck is this person even talking about!?" so I'm relieved to hear that it makes sense to other people who experience the same.
So there's a comment I made recently that has all the things I wish someone had told me when I started on stimulant meds here. One caveat though: I think that ADHDers generally tend to notice a significant reduction in anxiety when on stimulant meds but I am not convinced that this is necessarily as common for auDHDers.
It's super common to get burnt out on stimulants as an adult, especially if you've been through a lot of shit in life in a general sense and/or it's been a really arduous process of arriving at the diagnosis of ADHD.
This is compounded by a few factors:
AuDHDers tend to report being sensitive to stimulant meds.
It's my hunch that auDHDers are more prone to autistic catatonia and, while studies indicate that stimulants are helpful with catatonia, I'm of the opinion that in the mid to long term stimulants are prone to aggravating catatonia. (Catatonia very likely being interchangeable with burnout in this case.)
Stimulants tend to make your nervous system more reactive. This isn't always the case because it's a complex matter but auDHDers may find themselves trading off between improving their executive function with stimulants at the expense of being more prone to becoming overstimulated and imo suppressing or internalising the experience of overstimulation on an ongoing basis is a fast track to burn out.
AuDHDers routinely report that when they are on stimulant meds they feel "more" autistic. My hunch is that if your mind is a whirlwind of hyperactivity or your attention is so thin on the ground then when stimulants help to address this and with a quieter, more focused and attentive mind you are able to notice your autistic traits more readily. I also think there's probably something in there with ADHD sorta taking a predominant role which sidelines autistic traits because autistic traits tend to be more subtle, a bit like when you're in an emergency and you're just focused on the immediate situation but you don't even realise that below that urgent experience which is blanketing out everything else, it turns out that you're actually really hungry but all of your awareness is devoted single-pointedly on the situation so it's only after the emergency is resolved that you are like "Holy fuck, I'm starving all of a sudden??"
Honestly, that's a hard question.
My general advice would be to consider revisiting stimulants at a low dose. Note that different stimulants can vary in their effects and from person to person so responding badly or not at all to one stimulant medication isn't conclusive evidence imo.
I'd also inquire with my prescribing doctor about adjunct ADHD meds. I'm a big fan of clonidine for me personally - it helps with my sleep, it has basically resolved my PTSD nightmares, it really dampens down my RSD, it works well for me to counterbalance my sensitivity to the norepinephrinergic side-effects of stimulants, but perhaps most importantly for your question it really helps me with regulating my nervous system.
Clonidine doesn't work for everyone though and there's a sweet spot with it - too much and you'll sap all your motivation to do anything because your brain will be critically low in norepinephrine. I've heard reports that ADHDers tend to respond well to either guanfacine or clonidine but generally not both.
I'd encourage you to try and trace out the causes of that burnout: was it that you lost your appetite and your diet was significantly impacted? Did the stimulants disturb your sleep? Did you find that you were pushing through tiredness, the need to take breaks, and the need to eat during the day? Was your nervous system getting really dysregulated by your sensory "diet" at the time? Did you notice that your brain started dredging up old, unresolved trauma which led you to burn out? Were you just on too high a dose or were there any difficult side effects from the meds?
There's a lot of causes and it's likely that there were multiple factors involved. I can't tell you what they were for you but you will be able to determine what happened last time and this will put you in a better position to manage these factors if you go back on stimulants.
I can help workshop some of this stuff with you, especially in regards to meds that are useful for ADHDers, but of course I'm not an expert so take what I say as being general pointers and not as professional advice.
That's a big question.
First thing, if you've got ADHD or you suspect that you do then it's always going to be an uphill battle on a neurodevelopmental level. Reconcile yourself to this.
I think that appropriately-medicated ADHD is important for establishing routines and habits because it's the dopamine that is crucial in the neurochemical reinforcement of whatever pattern you're trying to establish. If you're low on dopamine, you're going to be attempting to establish a routine on hard mode and there's not really any way around that fact.
Next, a lot of habit and routine advice comes from well-meaning neurotypical people which works for them. This is not necessarily applicable to autistic people/ADHDers/auDHDers.
One thing that I urge this cohort to be very cautious and mindful of is habit stacking and task stacking. While everyone does this to some degree, and while this is very helpful and often important, the risk of stacking for this cohort is twofold imo:
Making a habit stack of checking that a door is locked when you leave the house?
Great!
Having a huge chain of tasks that you feel that you must do, making it feel like you can't even get up because it has all snowballed into one massive project?
Not so great!
This is where the autistic traits take centre stage but if you have a big stack that you work to and, for whatever reason, you have to change the order or you aren't able to do certain parts of the chain then this can really make it difficult. At worst, your brain can get kinda frozen or it can go into full autistic revolt because of unexpected changes.
Next up, I hate the "swallow the frog" advice for this cohort. I think this is a shortcut to being completely overwhelmed and hamstringing your motivation and productivity. I'm a big fan of starting very small and going for the easiest task so you can start to build up momentum with which to tackle the larger tasks rather than trying to force yourself to do the biggest, most difficult task first.
Following up from that point, I think it's really important to milk the dopamine as much as possible from a routine. Checklists are great because you can cross things off and you get a sense of progress. It also offloads some stuff from your working memory by outsourcing it, which is a good thing all round.
I try to very consciously cultivate a genuine attitude of appreciation and gratitude towards myself for doing tasks and routines. When I wake up late and I'm scrambling to get out the door, I will consciously turn my attention to how I put my wallet and keys and stuff into their designated place the night before to feel thankful that I saved myself a lot of stress and a lot of time. I often go carrot-and-stick with myself, recalling the last time I lost my wallet and keys because I didn't put them in their place, and how this negatively affected me, then I contrast that to my current experience.
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I think it's also important to start small with routines and to aim for something that is below 75% of your capacity, however you wanna measure that. If you are trying to implement a new routine and it requires you to devote 90% of your effort to maintain it then you're setting yourself up for failure because it will fall apart as you are inevitably going to be operating at 60% when you happen to have a bad day.
So start realistically and don't bite off more than you can chew. You can always incorporate more into your routine once you've settled into it.
It's also important to recognise that you're probably not going to be able to maintain the routine indefinitely, there are going to be some setbacks and disruptions along the way. That's okay. A routine that is done 50% of the time is infinitely better than a routine that doesn't exist, so remain focused on the positives and on the benefits that you got from it. Don't adopt the attitude that one slip-up or a couple of missed days means that you blew it.
External motivation can be really useful for ADHDers especially. If there's a way of having accountability outside of your own head, even if it's just a habit tracking app or a whiteboard, then use it to help reinforce your motivation. Understanding the ADHD interest-based nervous system so you can take advantage of how it works might be really useful in this respect:
Last of all it's hard for a seed to sprout and grow a firm network of roots unless the soil is conducive to growth, and likewise it's hard for a routine or habit to be established if the conditions are hostile. If you are burnt out, if you get home from your day and immediately collapse into executive dysfunction, if you are chronically overstimulated, if you aren't taking reasonable care of your physical and mental wellbeing, and stuff like that then it's just going to be really hard work to establish routines and habits. You cannot pour from an empty cup, y'know? Sometimes it's about addressing the underlying issues which are obstructions to having a routine rather than being about trying to implement strategies to create routines.
Sorry I don't have some awesome, one-sentence piece of advice that changes everything. I really wish I did, believe me.
Thank you!!
I also showed this to my mom and she relates to a lot of it too.
I know I could try other types of stimulants other than Vyvanse, but I'm scared to try again because of how badly it fried me... I feel like I'm just starting to recover from that, and that was last year. I'll bring this up to my therapist though.
Also I'm taking zoloft because it seems to help reduce my sensitivity, but I'm wondering if I should be trying something else, but I'm afraid to go off of it...