So you just found out you're autistic, you have a tonne of burning questions about your experiences, and you want to compare notes. Well, here are mine!
A friend of mine recently got an unofficial autism diagnosis from some medical professionals in his life and, knowing that I was autistic, asked if I'd be willing to chat. I pointed him to my previous writing "coming out" as autistic, and he had a bunch of follow-up questions to which I wrote detailed answers. A week later, he conveyed personal thanks from his therapist because I apparently got through to him about things he wasn't listening to his therapist about. So with his permission, I've converted his (unedited) questions and my (edited) answers into this blog post, in the hopes that it'll help more people.
Q. What are all the things that have helped since you've realized you were autistic?
So many things! I would say the two broad categories are: strategies to improve my relationships / interactions with other people, and strategies to help myself be happier when I'm alone.
With the first, it helps to articulate to other people what I need from them and what my communication style is so that there is as little confusion and discomfort for everyone as possible. For example, I ask people to be very direct with me because otherwise I don't always know exactly what they want from me, and it has led to many unpleasant situations where someone was saying something indirectly and I didn't understand so I didn't know to change what I was doing, and that made things uncomfortable. Two examples of this that come to mind are: saying, "You don't need to do that," when the actual request was that I stop helping with the dishes, and saying, "Let it go," when the actual request was to please stop digging further. There are fewer of these situations when people can commit to telling me things directly as an accessibility request. (Note that this doesn't always work. Sometimes people will say they'll be direct and still be indirect because allistic habits die hard.)
Another communication thing that I mentioned in my initial blog post was having days or times when words are hard, or when speaking is hard. When I can understand and frame this as an autistic need, it makes it easier for me to ask friends whether we can do texting hangouts instead of a voice call, or a voice call instead of a video call, for example, because it would require less energy.
In terms of how it helps my own personal understanding of things, most of it has to do with letting myself just exist and allowing myself to do the things I want and need to do to give my body comfort. I have gotten much more comfortable stimming, especially when I'm on my own but now even when I'm in the presence of other people but not "performing" attention. I will play with my fountain pen cap and shake my legs and rock and bounce in my chair and do whatever else my body just wants to do. I will let myself eat my samefoods without judgement or anxiety about how it appears to other people or how it's "weird." I can respect the times that I go into focus-mode about birds and don't want to talk to anyone, without judging it or thinking that I'm being rude. Of course, there's a balance to some of these things especially when they involve other people who want attention and time from you, but here the key has been having friends who are willing to work with me collaboratively on solutions that don't require me to be a different neurotype.
In addition to things that increase my general comfort, it is also very helpful to understand that what I sometimes experience if I go too hard or if shit happens has a name - sensory overload and meltdowns. I've been learning about the things that give me comfort in these situations, giving myself permission to do these things my body needs when I get into this state, and also to try and understand what some of the triggers are so that I can reorganize my life so that I'm not consistently experiencing autistic burnout.
Q. What are your thoughts about the whole spectrum thing?
The way I understand and employ the word spectrum is that there's a wide range of ways in which autism surfaces in different people and there's no one way to be autistic. A quote I like is, "If you've met one autistic person, you've met one autistic person."
Fundamentally, since it's a processing disorder, there are different things we might process differently. This shows up in my own autistic friends, for example. My thing is sound - the thing that's always affected me and is usually the first danger sign that I might be approaching a state of sensory overload. An autistic friend who once visited me was shocked at how much they saw sound affecting me on a day-to-day basis because it doesn't bother them as much. Another friend's main thing they talk about a lot is sensory defensiveness, whereas I don't normally experience that. I'm a mostly speaking autist but I know semi-speaking, unreliably speaking, and non-speaking autists. I have two friends who need very specific textures on their clothes, whereas I don't pay much attention to this. Some of my autistic friends are wildly sarcastic and deadpan all the time, and meanwhile I struggle with all non-literal language and it's quite obvious to people who've spent a bit of time with me. Some of them have stims I find unbearable, and some of them probably have issues with mine!
All this to say basically that even though I feel significantly more comfortable with autistic people as a group than allistic people (with some individual exceptions on this side), there is a lot of diversity in what that actually looks like - it's not all the same.
Q. What are your thoughts on the fact that we use the same word for people who with a particular cognitive style and people who have a very severe handicap?
So one of the frustrating things about this way of framing autism is that it creates a dichotomy of "high-functioning" and "low-functioning" autism. I say dichotomy, but it's not always presented as a binary - sometimes people try to propose different functioning levels. There are a bunch of problems with this.
One of the more practical issues with this idea of classification is that it acts like every autistic person is sort of static in their level all the time, whereas the reality is more like: if you met me on a good day when I wasn't stressed in an environment that wasn't overstimulating for me and I masked for you, I would pass as normative, allistic and neurotypical. Whereas if you saw me in meltdown mode rocking under my covers for 3 hours, wanting to be in a vat of acid to melt my skin off so I didn't have to feel it on fire anymore, feeling like rain on my skylights was like daggers repeatedly stabbing my eardrums, and unable to string a sentence together, you'd put me somewhere completely different on the scale.
People cleverer than me have better critiques of functioning labels than I do which you should read about if you're interested but basically it's counterproductive to focus on "levels" and classification and it's more helpful to focuses on the similarities (different neurotype, different way of processing).
More importantly, though, this sort of separation stems from the ableist (and capitalist!) idea of usefulness to society - like, oh, if you're a maths genius type then you're a Good Autist, and if you can't speak then you're a Bad Autist who can't be a productive worker, and all of this is genuinely just a bunch of ableist, eugenicist drivel that is plain awful, beyond being counterproductive. There is no collective liberation to be found in siloing ourselves like this.
Q. What are your reflections on internalized ableism around autism?
Oh gosh, where do I start with this. Society is ableist about autism and yes I have internalized many of these ideas from when I was very young, and we all have, and it is a constant, ongoing process to fight against it. It is not easy. I spend a lot of time thinking about this.
I know that wearing headphones to the grocery store significantly reduces the amount of energy I expend on a shopping trip, but I have a spent a lot of time agonizing over the fact that the grocery clerks probably think I'm being rude, even though I can hear them just fine. My headphones just dull the background noise - it's not like I'm listening to music when I should be paying the cashier. And in fairness, if the clerks knew I was autistic, they would probably (hopefully?) be nice about it, but they don't and it is almost definitely not the first thing that comes to people's minds when they see me. So this type of thing is a recurring conflict in my head - where I try hard to prioritize my needs in a society that doesn't necessarily know I have those needs and that may also be unnecessarily nasty about my actions (regardless of whether they know).
I've also struggled with internalized negativity about having samefoods that give me comfort because people have been weird about it before. Allistic society expects you and wants you to eat a variety of things, and when other people can see what I'm eating I can get cagey about samefoods or try to pretend I don't have them. I even tried to get on a plan with meal prep kits to force myself to increase the variety of things I was eating, but even there I had like one or two recipes that I would want over and over again and nothing else would make me actually happy. This is basically like doing ABA to myself because it's depriving myself of comfort to meet a mostly arbitrary allistic aesthetic standard. It's not good.
Of course, this means that my mental response has been to try to swing hard in the opposite direction, i.e., tell myself I should just be as unapologetically autistic as my body wants and "just stop masking," etc. But it is important to remember that masking literally happens as a safety response and is not really a conscious decision as far as I've read. So it doesn't actually make sense to penalize myself for masking either. It's complicated and contextual, as most things are.
Mostly I try to just... be. I try to be more aware of the things my body wants to do and likes to do and needs to do, and I try to respect that as much as I can, and I try to talk to people about my autism so that I can minimize the gap between what it looks like when I'm alone and feel safe, and what it looks like when I'm around those people.
Q. What is your experience of knowing when (not) to bring it up?
This is a tough question. I think in general I don't bring it up as much as I could with people in my school/work life because I feel like I have to explain many things since people have this preconceived notion of what autism looks like that is incorrect and based in stereotypes that I don't match. I worry about facing microaggressions or disbelief if I bring it up, because that has happened before, so I don't really bring it up unless I have a baseline level of trust and I'm prepared to talk about it in some detail.
I do talk about it a lot with autistic friends and I like talking about it on the internet and writing about it. Also it's a pretty important part of my therapy sessions with both my therapists and I consider it absolutely critical to communicate about in close personal relationships, particularly relationships where the other person is allistic and I have to explain that directness and confrontation are required accommodations for me because I am not able to read minds or read between the lines like they sometimes want me to.
Q. Do you know when you're masking?
I don't usually notice while I'm doing it but I will sometimes notice after the fact based on how tired a conversation leaves me. If I needed to put on a face and a voice the whole time then I feel tired at the end of it. This is why it takes fewer spoons to hang out with people who know I'm autistic and the least spoons to hang out with people who are autistic themselves.
Sometimes I can tell I'm masking when I'm having a difficult conversation with someone and I feel the presence of several layers of linguistic filters before I say anything. If I'm having a difficult conversation and I feel less filtered and safe being honest and direct, then I'm probably not masking.
Q. Do you experience issues with spontaneity?
So this is like the oldest complaint that my family ever had about me, ever since I was a little kid. When I was a kid I'd properly meltdown if plans changed and it has just been drilled into my head so hard that I am bad at dealing with spontaneity / changes in plans that I am extremely self-conscious about it and overcompensate quite hard in the opposite direction.
My strategy to do this to imagine every possible outcome and make my peace with it happening so that if it does actually happen then I've tried to front-load some of the processing. Some people call this anxiety. I don't (although anxiety is very often comorbid with autism).
For me, this habit of "imagining every possible outcome, especially the bad ones" is not something that interferes with my life as much as it is an autistic coping mechanism in an allistic world filled with randomness. It helps rather than hinders me, so even though it may share features with anxiety on paper, I feel uncomfortable thinking of it as a problem or a disorder.
But yes, I do love routine and fixed schedules and whenever I can point to periods of my life when I had that and it was stable, those are generally very good times.
Q. What is your experience of special interests, and why are they any different than just passions?
I think there are two things I can point to that are classifiable as special interests. When I was a kid it was cars, and for the last few years it's been birds.
My car obsession was never identified as a special interest but it looked very clearly like one, in the most classical textbook sense: I would beg my parents to buy me car magazines and I knew so much about them and when we'd drive around town I would point at cars and identify them, right down to minute details about models. Sometimes I wonder if this would've been picked up as an autism thing if I'd been a boy. I'm not interested in cars anymore, but I think everyone who knows me knows that my "thing" is birds.
I'm not entirely sure how one empirically differentiates a special interest from a passion or a regular interest (and would also ask if that's actually necessary), but I know I don't have other passions that are as intense or as consistent. Like, someone once asked me if I was into space and I actually hesitated and botched my response because in my mind all I could think was, "Well, sure, I like space, but I don't like space nearly as much as I like birds." And mind you, I've had star map apps on my phone and I've reported a fireball sighting and I've invested in space-related Kickstarter projects and I sometimes stay up to look for the International Space Station and I have a space-inspired tattoo and custom art! So for me to hesitate to even say whether I liked it, well, I think that's what lets me classify birds as my special interest.
Also, sometimes I get into this deep focus mode where I want everyone to just leave me alone with my birds - sometimes it looks like playing with my Wingspan cards or my German bird flashcards or doing deep-dives on Wikipedia or making lists of bird facts to share with the world or editing my bird photographs. And I get irritated when anything else bothers me, like I get annoyed even if I have to pee! Or I don't notice I need to pee, or I notice it but then because it annoys me, I ignore it and then forget. This is... not ideal.
Despite all this, I do still sometimes question whether birds are my special interest or just an intense passion because I'm not so passionate that I literally go birding every day at 5 in the morning - I like sleep and I have other things to do. But here I would go back to the question I posed earlier about whether it is necessary to delineate a special interest from an intense passion at all.
Q. What is your experience of sensory stuff and strategies that help?
There are various levels of sensory symptoms that I experience. I find I notice the sensory stuff more the more ambiently stressed I am. The more stressed I am or the more I'm not pre-emptively taking time to recover from any kind of interaction or outing, especially when they involve masking, that's when I start hearing the fridge and the pipes and the lights in an unbearable way.
This level of sensory stuff tends to be somewhat manageable with specific strategies, but if it turns into a full blown meltdown then it's pretty nasty. Meltdown for me feels like every sound is daggers stabbing my eardrums. Sometimes lights feel too bright. I usually lose my ability to speak, and at least once I have even lost my ability to read anything but the simplest, shortest sentences. If it's really really bad, my skin will feel like it's on fire and I will notice everything touching it everywhere. Usually I just rock or curl up under my weighted blanket and wait it out, but if this happens I lose a few hours of my day and feel like crap so I try to avoid getting to this point as much as I can.
In terms of strategies against sensory stuff, since sound is my big thing I chose to live somewhere where sound wouldn't be a regular issue for me - unlike, e.g., the city centre. I also have excellent noise cancelling headphones and I recently bought earplugs as well that don't block out all noise but have a calming effect on me. Also one of my best investments since moving to Germany was to buy a weighted blanket because I find when I'm feeling sensory or just generally stressed out for any reason, it makes me feel noticeably calmer to have my body be gently crushed.
I also have strategies to avoid getting to meltdown. I have been trying to be more intentional about mitigating stress and exposure to sensory stuff, e.g., by always wearing headphones to the grocery store, by spacing out my social commitments, by putting non-speaking days on my calendar for general recovery, and just trying to mitigate the stressors in my life from school and work as much as possible. Another thing is giving myself permission to do the autistic things that help with managing stress, e.g., giving myself permission to eat samefoods when I'm stressed out, allowing myself to stim more in class and on calls and even outside of that, etc.
I've had a lot of internalized baggage about this sort of stuff for a long time and allistic society's messaging about all of this doesn't help either, but this is where listening to autistic people and respecting my autistic body's needs is important and ongoing work.
If you just read this, suspect you're autistic, and want to chat, I'm available via email. I'm also always just happy to hear when things resonate with folks, particularly about autism, so please tell me if this does!
This post is mostly full of practical advice, experience and autistic self-love and self-acceptance, but I have longer thoughts for another day about autism and trauma - past and present, and how our experiences of the world as autists affect not just our autistic-allistic relationships but even autistic-autistic ones. So if you want to read that, tell me (it'll be good writing motivation!) and subscribe to my RSS feed, nerds!