A lot of this sounds really familiar. I’m dealing with a lot of RSD right now diving into dating apps and seeing my communication issues come up time and time again, feeling like there’s a black hole forming in my gut because I might have inadvertently insulted someone and that’s why they’re not answering my text message

I’m a big fan of normalising being a part of the high social filter gang.

If you think I’m just making excuses rather than describing what I’m struggling with?
Oops - you just hit the filter!

If you presume the worst of me or if you aren’t able to articulate that you feel upset because of the way I came off/the way you interpreted what I said?
Oops - you just hit the filter!

Now I’m not advocating for just cutting everyone out of your life or anything lol. But it’s okay to have a high filter, and I honestly think it’s probably for the best especially for autistic people.

I need someone to say “Excuse me??” when something I’ve done feels insulting. I can’t deal with someone in my personal life who isn’t assertive enough to address these things, and likewise I can’t deal with someone in my personal life who isn’t going to listen to me when I explain what I had intended. If someone is going to brood on a perceived slight for days while expecting me to identify the change in their mood so that I will cast my mind back over the past week to try and figure out what did wrong, they’re going to be miserable around me and likewise I’m going to end up being miserable around them too; I just can’t afford to extend my masking so far that I’m constantly trying to shape my behaviour and language to meet someone else’s wants/needs while trying to decipher their emotional state and constantly going through mental replays to scour my memory for anything I did which might have caused offence.

That’s not to say that I expect someone to be perfect in this regard or that I’m giving myself a justification to switch off my empathy but I do need someone who is confident enough to be able to handle miscommunications effectively and collaboratively.

If someone isn’t capable of that or they aren’t willing to meet me on that level, that’s cool—I know I’m not for everyone and I’m a bit of an acquired taste—you do you. But I’m also applying that to me as well and part of that means having people around me who just understand autistic communication because they’re autistic themselves or people who I can work with to bridge the allistic-autistic communication divide.

Also experiencing horrifying irrational guilt at the fact that I haven’t been keeping up on my Unmasking Autism book club

I was wondering where things were up to with that.

I had thought about reaching out to you but I didn’t want to add to the pressure. I’m just glad that things are okay and, tbh, I think it’s safe to assume that everyone who is participating in the book club feels the same way.

Remember that you are facilitating a book club specifically on autism in a neurodivergent-specific comm. If that isn’t the perfect crowd to say “Oops, sorry - this slipped off my radar and then I managed to roll that up into a huge ball of guilt and shame which has left me paralysed” to then idk who would be better.

but being generally really bad at interacting with humans

I’m really not in the business of telling people how they ought to feel but one thing that’s been really important for me has been to frame my experience of being autistic in an allistic world as one of an (invisible) cross-cultural divide.

Other autistic people generally seem to just get me. Always have, even before I started self-identifying as autistic let alone being diagnosed.

My mannerisms, my speech, my tone, my body language, my way of interpreting communication - these are all fundamentally at odds with the allistic mode of communication. I genuinely feel when I’m masking as if I’m in a different culture and I’m consciously translating what I want to say and how I want to convey that message while also carefully and consciously interpreting the communication from allistic people.

I once was fluent in another language. Masking while engaging in social interaction feels close to a 1:1 of the experience mid-level proficiency in another language—good enough to get by with concerted effort but not so proficient that it feels effortless—including the executive function crash that comes after a long day of translating and existing in a fundamentally alien cultural context.

But the kicker is that it’s usually obvious when someone isn’t a native speaker and people adapt and adjust their expectations accordingly. They also tend to extend a lot of grace to people from different cultures too.

I don’t get that same sort of consideration because I pass for being native to the allistic culture when it’s really not the case. That means people have higher expectations of me and they are less patient, less forgiving, and less understanding. In a lot of ways I think it’s actually harder to be autistic in an allistic world than it is to be a somewhat-proficient second language speaker in a different cultural context.

At the end of the day, I just have a fundamentally different way of communicating and experiencing the world but this is (mostly) invisible to others. That doesn’t mean therefore I’m bad at communicating any more than it means that your average allistic person is bad at communicating because they aren’t well equipped for communicating on the autistic level, it’s just different.

In fact, I’m proud of how well I communicate with allistic people and the amount of effort I put into this. If I end up in a situation where there’s an allistic-autistic miscommunication, as I inevitably will, I’m not going to shoulder all the blame for it. I’m doing my best and if I wouldn’t beat myself up for unintentionally saying or doing the wrong thing in a different cultural context then why would I do this when I’m essentially in an allistic-autistic cross cultural context? I’m quite happy to chalk these miscommunications up to being the product of a cultural divide tbh.

I’m starting to think I make people laugh the same way you would throw scraps of meat to placate a hungry predator. Like, a deep-seated fear of others is the motivation. Not just the desire to be liked, but the certainty that I will be punished if I don’t placate them. Lots of trauma informing this, I’m sure.

You are sufficient. Some people might want more or they might want something different, but that’s their own business. If you want to entertain people or to make them laugh then go for it but remember that you don’t owe them this.

You might be interested in this interview with Dr Miyabe Shields about cannabis and ADHD and autism.

Video description:

Dr. Miyabe Shields has a PhD in endocannabinoid pharmsci and is co-creator of ‘Network of Applied Pharmacognosy’ with Dr. Riley Kirk, a non-profit contributing to education and destigmatising of emerging medicinal natural products. Miyabe is also a thriving queer and neurodivergent Instagram personality with over 40K followers, which is often used to promote ‘Project Chronic’ from ‘Dose Like A Scientist’, a community-based educational platform for neurodivergents providing a network, teaching them about pharmacology and advocacy.

(that link skips to subject intro at 1:41; click here to skip to the interview at 2:21)

One of my big takeaways was that she truly believes that most daily users of cannabis are self-medicating neurodivergents trying to survive in a neurotypical word.

This is a really good question.

I used to smoke a lot of weed before I was diagnosed or had an inkling that I was auDHD so I’m going to try and cast my mind back.

One thing that does stand out to me is that I know of one person who is at least autistic that definitely uses cannabis to manage their catatonia, which tbh kinda tracks. It’s pretty rare for autistic people to be diagnosed with autism with catatonic features, let alone to be treated for catatonia.

In my case, I recall finding cannabis to really help ease the tension I would carry in my body and the degree of anxiety that had gradually ratcheted up over the day(s). I feel like it helped me to decompress from sensory overload too but I was super disconnected from my sensory experience back then so it’s hard to say for sure.

I actually think cannabis gave me an opportunity to unmask a lot too, not that I was aware enough of this at the time.

It’s worth noting that I have a really strong preference for high CBD cannabis and ingestion methods over high THC, because I can find THC a bit heady.

especially the differences in adhd+weed and audhd+weed

Well I’ll be goddamned, this is about the first time that I’ve had someone ask me about this stuff which has left me completely stumped!

I have absolutely zero awareness of what cannabis is like for ADHDers so I have no point of reference to compare the ADHD experience to my auDHD experience with.

So unusual eye contact is a very common trait in autism.

The most obvious example is avoiding eye contact but autistic eye contact gets pigeonholed into being exclusively this when, in reality, it’s not unusual for an autistic person to give very intense and sustained eye contact as well. Generally eye contact tends to be avoided in low masking autistic people but as the masking increases the eye contact tends to be more intense until you get to very high masking, where eye contact is often roughly that of an allistic person. Note that this isn’t something scientific or diagnostic, it’s just a general trend, and it isn’t an absolute thing; I worked with one autistic person who was low masking and who had quite high support needs that comes to mind. They would often avoid eye contact but at times they would give very intense sustained eye contact as well. Similarly when I’m in high masking mode, I can slip from fairly allistic-passing eye contact into giving intense eye contact unintentionally but on the other hand if I genuinely need to focus in order to recall information or to receive multi-step verbal instructions (ugh) I’m almost immediately going to break eye contact and avoid it while I’m focusing.

What defines it is that it is unusual and it’s viewed as somewhat socially inappropriate; me breaking eye contact to focus in closely to what they’re saying feels “wrong” to an allistic person, very intense sustained eye contact feels intimidating or threatening to an allistic person even if the autistic person is doing their best to show good manners by using eye contact to indicate that they are listening, eyes that switch from intense eye contact to an averted gaze and back again might be interpreted as the person being furtive or untrustworthy when really it could just be an autistic person trying to perform to allistic expectations of eye contact.

Is unusual eye contact the defining characteristic of autism? No.

Is abnormal eye contact one indicator that a person might be autistic? Definitely.

Are there other factors that may influence “unusual” eye contact? Absolutely - different cultural norms, social anxiety, visual impairment, neurological differences besides autism, having ADHD and making eye contact before lapsing into a daydream so that you accidentally end up giving someone the death stare or being so distracted that you can barely maintain eye contact… there’s too many potential causes to list.

Without knowing more it’s very hard to give an indication one way or another though.

This sounds exactly like me, and now you’ve convinced me I have both as well lol.

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.

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.

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??”

Now what?

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.

(also do you have any advice for how to get a routine going? I think that’s what I need the most right now.)

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:

1. You run the risk of stacking too much and bringing about inertia, paralysis, executive dysfunction, and overwhelming yourself.

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!

2. The more you stack, the more vulnerable your habits or routines become to being disrupted.

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.

[Continued…]