Welcome to the coziest corner of the DSM!
You may be here because I tricked you, or you suspect this could potentially apply to you, or perhaps you're just curious. Either way, I hope this little guide is illuminating. I did a lot of typing for it and if you let it go to waste you are personally responsible for hurting my feelings.
I did not learn that I was autistic (and still am too) until around the age of 30, which is pretty old in both dog years and autistic years. Looking back now, it feels obvious, but I (and probably virtually everyone) had such a skewed impression of what autism is that it really never occurred to me to legitimately consider it a possibility and look into it closely.
I'd always thought the hallmarks were things like not understanding sarcasm or lacking things like empathy or self-awareness, and that is pretty much the opposite of what I've always had going on.
I'd always pictured autistics as exclusively the kids in special ed classes at school who aren't able to function in typical classrooms, but 1. autism is a spectrum that varies widely in both type and intensity, meaning that many autistics are able to blend in, and 2. I had an uncharacteristically uncharitable and unsympathetic attitude toward the ones who were in special ed, as though they were a different species, whereas now I can easily picture myself requiring the same accommodations had certain things been only slightly different.
This page will discuss and include:
- Highlights (you are here)
- More using my experience as an example
- Culture
- Therapy
- Resources PDF - link and excerpts
- Unmasking Autism - excerpts
Here are a few aspects I'd like to highlight upfront before providing some resources and excerpts therefrom. Is therefrom really a word? That's nuts.
Spectrum
You've probably referred to autism as "the spectrum," and it has been officially classified as Autism Spectrum Disorder. There used to be something called Aspbergers syndrome which was basically considered autism-lite but is now no longer a thing, partly because it was kind of a bogus delineation and also its namesake was a nazi.
As we understand it now (which isn't comprehensively by any means), it's more helpful to think of it not as a spectrum like a line between more intense and less intense, but as more of a multidimensional wheel-chart type of thing, where one autistic person may be high in certain categories and low in others, while their autistic friend may have some similarities but big differences elsewhere.
You can find one of these with a good explanation here.
All of this combines to create a unique sort of thumbprint for an individual and play into what they experience, deal with, and how difficult it may be for them to get by without support in a world not designed for them – which brings us to:
Masking
This is basically the dynamic of changing what you naturally do in order to better fit in. This can be as simple as making sure to be more expressive and loud and eye-contact-y when speaking to people at the office, while you naturally are more dry and monotone and peripheral. It can be as complex as mirroring entire personalities and behaviors in order to keep up friendships because you feel too weird or boring or empty at your core. It can be as difficult as holding back the urge to scream or flee the room when someone is making a smacking or clicking noise that triggers your fight or flight response.
Most people may do certain things like this to some extent, but autistic people's can become so thoroughly ingrained that we don't even realize they are happening, perhaps as far back as we can remember, and indeed we may feel as though we don't have any idea what the "real" us is underneath our masks. We may be able to relearn how to get in tune with ourselves by getting alone time, being able to fully recharge, or meeting people with similar tendencies that make us feel more "normal" and socially safe to let our guard down, but it can also be a confusing and scary process and is certainly not something I have good answers about.
I think the best all-purpose descriptor I can think of is like autistic brains are running a slightly different Operating System than most, and so the rest of the world is just interacting (verbally and non-) using the "normal" OS, but autistic brains, whether they realize it or not, are trying to do everything everyone else does the way everyone else does it, but are having to sort of translate everything in and out of their OS for it all to be compatible.
Even if someone can achieve that seamlessly, it sure takes up a lot of computing power to keep that up, and so it can exhaust you either on a daily basis or in a long-term burnout way, and/or you may just be a little slower at processing information in the moment in certain circumstances. And I made that description up, and don't think there's actually a single specific Autism OS per se, but I've found it to be true that there is a sort of wavelength many autistic people are on that makes interacting with each other much more effortless than with others. For more about this, see the bit about the Sci-Show video further below regarding communication studies.
Burnout
All this constant masking, anxiety, and general living as a square peg being grated down into a round hole frequently and unsurprisingly results in very intense periods of burnout, which can last from a short period to potentially years and be completely debilitating.
Also, as you might expect, if you're experiencing this but don't have any idea that it is related to a disability, it can be especially confusing and distressing and make you feel like you're broken or lazy or all kinds of other negative things, and trying to get treated for generalized depression, anxiety, etc. may or may not help since it's not addressing the true underlying causes.
Burnout hit me hard in school, long before I had any understanding about it. The prevailing pattern in my young life was that, as soon as it became time to start making any decisions about life, I just sort of passively fell into the groove of whatever it seemed like I was supposed to do, not because I had any actual personal drive or aspirations. This is not a very effective fuel to power your engine with and I don't recommend it.
All my examples of people slightly older than me (e.g. brother, brother's friends, family friends) were extremely successful in high school, like, graduating top ten (or top three or top one) in our huge-ass classes, national merit scholars, very popular, successful athletes, take your pick, so once I got there, I just sort of assumed I had it in me to do the same. And for the first year, I pretty much did it – I took all pre-AP classes, got almost all As, and fought through a grueling year-long basketball program on the side. It felt par for the course, but I was overextending myself in a major way, and didn't know it because what I was doing was in line with the only models and experience I had.
I don't remember if it hit at the very end of freshman year, during the summer, or even the beginning of sophomore year, but I'd gotten so burned out I could barely function. It was like if you played a really intense pro sports season but then somehow didn't recover at all over the offseason, so you show up on day one and everyone else is 100% refreshed and ready to go and you're still broken down from the last game. I thought I was just depressed over a girl but it was much more than that. I needed more time off to just do nothing, but that's not possible, so I dragged myself through as best I could. I gave up basketball before it really even got started again, pretty soon I'd dropped from AP to regular in a few classes, didn't have any friends in school (and would soon lose my friends outside of school too because they were all really just the youth group for the church I soon stopped going to), could never muster the energy or interest to try new extracurriculars. It was, as Socrates might say, a bummer.
Not that it's the ultimate cause of everything, but in retrospect, autism had a lot to do with all this. Just existing in school all day was a nightmare. I was literally constantly preoccupied and self-conscious about how I appeared, how I moved, unable to speak in groups, brain working overdrive just trying to process and be hyperaware of everything going on around me, keeping up a mask to try to be normal and fit in or at least go unnoticed. I ate lunch alone in the library every day just because I was desperate for a bit of privacy, and barely ate. It was like running a marathon every day, so every night was just spent retreating to my room where I could be alone and in control of things and desperately try to recharge a little before doing it again the next day. I wasn't flourishing or comfortable enough to make or chase goals of any kind, academic or personal, because I was just in survival mode, every meter was running at a deficit.
I embraced lonerism to a degree, not in a rebellious way, but I didn't bother much about not having friends, I didn't want to be perceived, I skipped classes and left early pretty much the maximum amount I was able to without it causing attendance problems. Through means I don't remember, I established a tenuous truce with the security guy in the parking lot responsible for keeping student cars gated in. I just needed to get away. I somehow graduated decently, mostly on the strength of being good at standardized tests. Happy enough ending I suppose.
But then, because I wasn't at all aware of the underlying reasons for any of that, I essentially did the EXACT same thing in college. My first year was defined by chill intro courses at UT Arlington with the express purpose of getting a guaranteed transfer to UT Austin upon doing well enough, and I did this without too much fuss. But then, in Austin, I found myself somewhere I didn't have much business being, trying to major in something I had no business majoring in, tank hitting empty as soon as things got serious. I bombed out hard, this time with the added pressures of wasting money and losing career prospects. Straight back into survival mode. Of course in retrospect people in the 18-22 age bracket clearly seem like babies who should not be pushed into these situations and feel like their lives are ruined if it doesn't go perfectly, but that's life I guess.
After a catatonic and inconsolably depressed period I retreated to courses I already knew how to succeed in and did my best to limp onwards again, this time with less overall success, and eventually found myself just working at a coffee shop with no plan because it was something I could do (though this too was pretty harrowing in retrospect on a physical and emotional level). Through all this I again learned to fervently hoard and protect my private alone time, relying on my home and hobbies like gaming and reading to be able to decompress and briefly feel like a living person, which would almost feel like an addiction if it wasn't a basic need. (Also, as you might guess, autistic people are at increased risk of substance abuse for precisely these means of attempting to regulate.)
I was lucky enough to make a couple friends at work and network my way into the tech startup world (which has since kersploded), otherwise god knows where I'd be. Still, it's difficult to not feel like the walls are gradually closing in as I feel locked out of many types of work, including anything that would require substantial reeducation, anything particularly sales- or public speaking-based, or, increasingly so, even anything in an office every day rather than remote.
I write all this to provide a snapshot of how easy it is for undiagnosed autism to weigh your life down and drag you to some dangerous and disruptive places. I spent all my most formative years believing I was just broken and lazy and weak and scared and slow, beliefs that I still have not completely been able to scrape off the hull, and it took having about as much support and resources from loved ones as you could hope for to keep me mostly on the rails. It is heartbreaking to think about how many people do not have such a safety net and who do end up broken under America's wheels without ever understanding that it's not their fault.
Diagnosis
There is unfortunately not a lot of great news here, as official diagnoses are both costly to seek and not particularly useful to have. As such, self-diagnosis is common, valid, and primarily beneficial in terms of self-understanding.
As part of the immersive American experience of Freedom, autism diagnoses typically cost a few thousand dollars and are not typically covered by insurance. Furthermore, there's not really an official, universal means of identifying autism because it's still so little-understood and diverse, not to mention how many adults have spent their entire lives building walls to hide the fact that they have autistic traits.
In the end, scoring a diagnosis from, say, a licensed psychiatrist is a bit of a glorified doctor's note: it may be helpful in requesting certain specific accommodations in the office or classroom, or getting your foot in the door with job placement agencies that prioritize disabled individuals, but it's not going to be a massive meal ticket. Just to get approved for disability benefits or supplemental income, you have to be able to prove that you are fully incapable of working, don't have a spouse with income, and even then your finances will still be heavily regulated, with benefits cutting off if you accrue more than $2000 worth of assets to your name, which makes things like car- and home-ownership unfeasible and can even prevent being able to employ caregivers. It's all pretty bleak and, for someone like me, rather than providing hope of a little extra help, instead just makes me eternally grateful that I'm not any worse off.
So, unofficial/self-diagnosis. Whether it happens via a therapist, peer review from friends, or self-study using online resources and books and whatnot, you always have the final say on what resonates with you and what you identify with, because as we've established it's not like you're getting something for nothing or taking anything from someone who needs it more, you're just gathering information that can help you grow. Finally learning this about yourself presents truly massive opportunities to learn about how you work, reassess your life, and find further resources and community.
What's the Deal With This Guy?
Just to continue using myself as the only example I really have to offer, here are some of the autism-related traits I DO exhibit and which either helped clue me in on this initially or have become clear afterwards.
I've turned out to have a statistically unlikely number of autistic and otherwise neurodivergent friends and acquaintances, with whom I share many similarities that set my autism-radar off quite strongly but also many differences. As I said above and is also expanded upon in resource excerpts later on, everyone is unique and no experience is a better representation than any other, I just hope more details and examples might help get the gears of recognition turning for some.
Noise Sensitivity
The first clear issue I began experienced was misophonia, which can absolutely exist independently or as a part of other neurodivergencies, but which does have a pretty common comorbidity with autism. This is basically having one or more noises, usually repetitive things like food-chewing or pen-clicking, that upset you to the point of triggering your fight-or-flight reflex, making you want to scream or run away or hit something or any number of extreme reactions. For me it began with chewing noises – mostly excessive, wet smacking noises, but also just normal chewing and crunching to a certain extent. This first started around late high school or early college and has gradually and consistently worsened over time.
One interesting point here is that sometimes, say in an office environment, I'll hear vague noises from down the hall that could be chewing, like crunching a chip, or could equally likely be something else, like rolling a particularly loud computer mouse rolly wheel bit, whatever they're called. As my brain flip-flops between thinking it's one or the other, the misophonia response instantly arises or vanishes just as quickly. This indicates that it's not purely the noise itself causing the effect, but that there is to some extent (perhaps a very large one) an element of perception, association, and feelings of right/wrong.
For example, my noise sensitivity also in time began to extend to neighbor noise: initially only really egregious things like playing music or TV at such a loud volume that the base rumbled me, or loud parties that kept me awake, but eventually worsened to include pretty much anything, like heavy walking, dog barking, even just talking loudly. I have absolutely zero noise sensitivities in public and do not mind loud volumes at all – I can go out to some party or the mall and be around extreme chaos and be unbothered, then arrive home and hear a single dog bark and become agitated, even panicked.
It's partly about being trapped with the noise in my home and it being repeated basically forever, or at least that lease-year, as well as the maybe-or-maybe-not reasonable sense of right/wrong in regards to finding it rude and inconsiderate to make these noises. At its worst it leaves me a panicked mess wearing noise-canceling headphones 24/7 basically hiding in a corner of my home trying to hide and unable to focus on anything else. It can be truly life-ruining and would see me walking away to build a shack in the woods if I didn't love water and internet so much.
Anyway, the three unblockable Bs of the apocalypse are Barking, Bass, and Babies. Please train your dogs, it helps them too.
Empathy But Like Moreso?
Pretty self-explanatory but I include this just as a counterpoint to the misconception that autism = lack of empathy. It's there. A lot. I sort of can't help letting it overwhelm me a bit at times. It is very difficult not to soak up the emotions in the room, and this can lead to tiring behaviors where you try to constantly keep everyone happy and in a good mood like trying to keep a balloon in the air lest you get dragged down too. But at least you can also be vicariously happy through others.
Speaking Difficulties
There are a few aspects to this one. The basic part is that I apparently tend to speak a little quietly and a little monotone. My best guess as to why this happens is that autistic people often try to take cues from others' behavior to see how to behave and match them, so it feels natural to speak at a volume that, from our perspective, is the same as others, except of course we are much louder in our own heads than we are to others. So, I hear someone speaking at an arbitrary 5, so I automatically speak at what sounds like a 5 to me, but of course if it's a 5 in my head then it's a 2 or a 3 once it actually gets to their ears. Just a hunch. This is also affected by my feeling uncomfortable with being overheard by anyone else, either neighbors at home or strangers in public, which is probably tied to the other major aspect: inability to consolidate groups.
I always got nervous and shaky when public speaking in class or wherever, and assumed it was just dumb kid stuff that I would grow out of, but then I never really did. What I've come to understand – and I don't know how much of this is autism-specific necessarily – is that when most people speak to a group, they're able to sort of consolidate everyone into one entity and still be able to think while engaging with it.
My cool and helpful brain, however, has not been able to do this – every individual is like a busy tab open in my browser and after a certain number it fries my CPU, I can't help but focus on each person and what I think they're feeling and getting lost in their eyes (non-romantically) (or perhaps romantically) and basically having an out-of-body experience because I'm split into so many pieces and none of those pieces are just thinking on my feet about what I'm talking about.
I typically try to script and rehearse everything I present, and deviations and questions are difficult to handle even if I know the answers. If it's remote, a helpful trick is to just drag my notepad over the meeting window so I can't see anyone and do my best to pretend it's a more relaxing setting.
Recharging
I typically need as much alone time as possible in order to fully decompress, recharge, and unmask. Due to both living with a partner and having apartment neighbors, and perhaps innate reasons, I gravitate strongly towards being very nocturnal when left to my own devices – if the rest of the world is asleep before midnight but I stay up until 5AM, that affords me five quality, dark, cool, quiet, private hours to revel and be productive in, plus I get the bed to my dumb long self for the most part which is good when you can only sleep in perfect laboratory conditions. It's a vampiric win-win. It turns out this is not conducive to most things in life.
Miscellany for the Connoisseur
Eye contact? It's hard because there's too much and too intense information and feeling being conveyed that distracts from all other assets of the conversation. Performing emotion and verbalizing things like affection on the spot? It's like when someone asks you what your favorite movies are and you suddenly can't think of a single movie you've ever seen. Intensified sense of justice/right/wrong? Once you convince me a habit or something is bad or unhealthy that is categorized that way forever and if you do it I'll be like why would you do that thing that is objectively bad to do. Picky eater? I don't have nearly as many issues as most others I know but a big one is finding it revolting when foods like applesauce are reminiscent of baby food. Babies are gross in general and extra gross eaters. Don't @ me. Yes they are innocent and no that doesn't help. Particular about my environment? I need a comfortable space to recharge and be alive so I take decorating and arranging very seriously. Maybe there's some sort of autism-specific feng shui. I used to be insufferably uptight about keeping every single item arranged perfectly and spotless but have thankfully been able to chill out in that regard, don't ask me how. Scared of yelling or rejection or conflict? You betcha. Fixations? I still don't really know what constitutes a hyperfixation – a fixation already seems like a pretty intense term – but my interests definitely ebb and flow on a weekly or sometimes monthly basis and I end up sort of bouncing around waiting to see what random game or book or whatever will fully absorb me that week, and it feels like a depressive period when nothing is doing that. Collecting? I just had a that's-so-raven flashback to when I was in elementary school and for no clear reason began collecting the little circles that would be produced when you punch a hole in paper and would store them by the thousands in these little clear plastic containers that were probably punches or sharpeners or something and my classmates would marvel at my mindblowing collections and it made me feel satisfied. Caught on too. Toy cars? In a line. Legos? Specifically displayed. Heartbreak at having to choose a single stuffed animal to sleep with while leaving the rest sad in the closet? Intense. Dice- and stats-based baseball board games? Custom-made. Virginity? Unthreatened.
Culture
SciShow: What Is the Autism Spectrum?
As with most things, there is a helpful SciShow overview.
One part that stuck with me is a study done on supposed autistic communication deficit: when playing telephone, all-autistic groups performed just as well as non-autistic groups, and it was only in mixed groups that communication broke down earlier, suggesting that neither group is objectively better or worse, just operating on different wavelengths, and we default to considering autistics worse simply because they're in the minority.
"Ultimately, for many people, the diagnosis is less about finding therapies and more about providing an explanation for your experience of the world."
Other Things Etc.
I've always gotten the sense that autistic representations in media are probably inaccurate in general, but I never knew exactly how. Well, who'd've thunk, it turns out just listening to actual autistic people is the best way to rectify this.
As also touched on elsewhere, exposure to other people in the community is one of the best ways to learn. I don't have a ton to offer in these departments, but one example of a writer I've found whose articles and podcast appearances I've found to be resonant and entertaining is Sarah Kurchak.
Therapy
A somewhat separate topic, but one I'm always eager to endorse. It might not always feel totally clear what the benefit of therapy is, especially if you're a big strong tough guy, but if you find someone you can talk to even on the weeks where nothing major is happening, it makes a huge difference already having an established relationship and schedule with them when something major does happen.
If you've discovered you're autistic and are gradually working to get used to this new perspective, having a therapist that either specializes in autism or is autistic themselves can make a world of difference. It has for me - it's not even that every discussion fully centers on autism, but, understandably, it usually ends up being relevant at some point or another even if it's not the focus.
How Do?
Head to this Psychology Today landing page, add your location, and then any filters you feel are relevant, e.g. insurance, gender, focus, remote vs. in-person, etc. When you click to view a potential therapist, there's a new feature where they can add a short little introductory video of themselves. This is valuable to me because my less-than-stellar therapy experiences in the past have mostly arisen from finding someone very dry and untalkative and generally hard to keep a conversation up with, so this allowed me to hear and see them and find prospective therapists that I could tell I could comfortably talk to.
Once you've found two or three that look promising, send a quick message through the site stating your interest and requesting a quick consultation call. At least one will probably reach out within a day or so, then you can talk and see if you're a good match.
In the past it's seemed cruelly funny that things like attaining medication and therapy seem designed to be as difficult as possible to pursue for the specific people who need them, because often things like depression make it really hard to jump through a ton of hoops, so I appreciate how streamlined this process has become.
The Scope
A plug for the program my therapist runs: The Scope provides free online mental health support sessions in group format facilitated by licensed counselors. Offered groups include focuses on navigating neurodivergence, queer mental health, sexual/gender identity, religious trauma, and anxiety and depression, as well as advocacy for students with autism or ADHD and LPC-A support.
Scams
If you start searching for autism-related stuff, you'll probably soon notice plenty of targeted ads from various institutes and studies and stuff looking for patients and participants and that sort of thing. These should all be carefully vetted and probably ignored, as they generally lead back to groups like Autism Speaks that are by consensus of the autistic community considered misguided at best and perhaps even skeezy.
There is no cure for autism or direct/specific medication or treatment, other than medications and therapies aimed to help manage symptoms that are objectively detrimental (e.g. anxiety) rather than, say, hiding your stims. If in doubt about whether something feels healthy, consider whether a treatment is aimed at helping you more fully realize your authentic self, or aimed at changing you/enforcing masking.
Guide to Self-Evaluation - PDF
The first time I discussed potentially being autistic with a therapist, they sent me this: a neat and tidy summary of many of the things I've talked about that also contains a very handy index of links to numerous online questionnaires/quizzes and such that you can take, free, quick, and easy. Of course nothing like that is definitive, but they can give you a better idea of the sort of criteria under consideration, and if you end up scoring moderate or high on the majority of them, well, that's a pretty good reason to keep digging.
Included below are a few standout excerpts:
Most autistic people are likely undiagnosed, unidentified adults. Lack of awareness about autism has led to a "lost generation" of autistics: autistic people who have not been identified by clinicians. Even today, many autistic children go undiagnosed because of the poor understanding of autism and its many presentations.
Due to increased awareness and the amplified voices of autistic people, many adults who went undiagnosed as a child are now discovering that they might be autistic. For many, this realization is the first step on a journey toward self-discovery and clarity.
Autism is an integral part of our identity and deserves to be treated as such. Clinical diagnosis can be helpful for some but very difficult to access for many. Because of these reasons, the autistic community is welcoming of self-identified autistic people.
Autism is often described from neurotypical people's perspective and according to the pathology paradigm. Many autistic and other neurodivergent people are critical of this approach. The neurodiversity paradigm and neurodiversity movement offer an alternative to the pathology paradigm. The neurodiversity paradigm states that neurodiversity is part of human diversity and that neurodivergence in itself is not a deficiency. Some autistic advocates have developed their own communal definitions of autism and the autistic way of being. Many autistic people have also created their own lists of autistic traits that often differ from the examples presented in diagnostic manuals.
Autistic people often have a "spiky profile": someone may excel in some areas and struggle in others. For example, someone might be able to complete highly demanding tasks and have a successful career, but struggle to make a quick phone call. Some autistic traits and differences may be disabling, and autism is considered a disability.
In order to survive in the neurotypical world and be better tolerated by their allistic peers, many autistic people make a great effort to hide, or mask/camouflage, their autistic traits. For example, autistic people often use scripting – practicing conversations, facial expressions, and other mannerisms – to prepare for social situations. Many have learned (often unconsciously ) to hide their visibly autistic behaviors, such as stimming, when in the company of others. Suppressing stimming can lead to increased stress because controlled sensory input is important for autistic people's emotional regulation and cognitive processing.
Masking can be a survival mechanism. Many autistic children start to mask early on to avoid negative feedback and mistreatment. Masking is linked to many negative outcomes, such as burnout and suicidality.
The diagnostic criteria are, in many ways, flawed. This is because the criteria and descriptions do not consider the perspective of autistic people. Many clinicians have a poor understanding of what autism is and how it may present, often relying on outdated stereotypes and thus failing to identify and accurately diagnose autistic clients. Because of this, many autistic people are undiagnosed. Some autistic people advocate for changes in the diagnostic criteria and the language used to describe autism in diagnostic manuals. In future versions of the DSM and ICD, the criteria might be different.
Important note: Autistic and non-autistic people have different, distinct interaction styles. Both autistic and allistic people often struggle to interact with people of other neurotypes, but not with the same neurotype. As autistic people represent the neurominority and the diagnostic criteria are written from allistic people's perspective, the DSM and ICD frame these differences as autistic impairments or deficiencies. This does not mean that the autistic mode of social communication is worse or less valid than the allistic mode.
Many conditions often co-occur with autism, but in some cases could be a misdiagnosis. For example, autistic people are often misdiagnosed with BPD. Furthermore, autistic burnout – devastating and often completely debilitating exhaustion due to chronic stress and unmet needs – is often diagnosed as an adjustment disorder, anxiety disorder, or depression.
The best way to figure out if you are autistic is to connect with autistic people. If you find yourself relating to common autistic experiences and finding communicating with autistic people effortless, the chances are that you are autistic.
So you have discovered that you are autistic. Congratulations! This discovery will allow you to better understand yourself and others, give you the language to better describe your inner world and experiences, connect with others who share those experiences, and live your life as your authentic self.
Going through the assessment process can bring up many thoughts and emotions – clarity, joy, sadness, and anger. Discovering that you are autistic or otherwise neurodivergent can be life-altering – it may change how you view yourself, your whole life, other people, and the world. Fully integrating this new information can take years.
Many late-identified autistic people are diagnosed in the wake of difficult life events, such as burnout. During this time, it is important to seek support, connect with your community, and take care of yourself.
Unmasking Autism by Devon Price - Excerpts
One of the recommended further reading items in the PDF, this is an excellent book that I and multiple friends read early in our self-discovery processes. I ended up with about two dozen markers in it that I was able to share with my wife so that we could have all these a-ha moments and come to a much better understanding of why so many things are the way they are with me and how they affect our relationship.
I highly recommend the whole thing, but if you're curious, once again, here are some of those marked passages. Subject matter tags are my own as are any transcription errors and relevant memes.
pg. 20-22 [sensory processing; attention to detail]
Autistic people have differences in the development of their anterior cingulate cortex, a part of the brain that helps regulate attention, decision making, impulse control, and emotional processing. Throughout our brains, Autistic people have delayed and reduced development of Von Economo neurons (or VENs), brain cells that help with rapid, intuitive processing of complex situations. Similarly, Autistic brains differ from allistic brains in how excitable our neurons are. To put it in very simple terms, our neurons activate easily, and don't discriminate as readily between a "nuisance variable" that our brains might wish to ignore (for example, a dripping faucet in another room) and a crucial piece of data that deserves a ton of our attention (for example, a loved one beginning to quietly cry in the other room). This means we can both be easily distracted by a small stimulus and miss a large meaningful one.
Autistic brains have unique connection patterns that deviate from what is normally observed in neurotypical people. When infants are born, their brains are typically hyperconnected; much of human development is a process of slowly pruning unhelpful connections and becoming more efficient at responding to one's environment, based on life experience and learning. In Autistic brains, however, researchers have found that some regions remain hyperconnected throughout the life span, whereas other regions may be interconnected (relatively speaking). It is difficult to sum up these connectivity patterns because, as neurobiologists at the Weizmann Institute of Science have found, every Autistic brain exhibits a different connectivity pattern. Our brain wiring appears to actually be more diverse than the wiring of neurotypical brains, which researchers believe have a consistent pruning pattern. The researchers at the Weizmann Institute have theorized that this means Autistic brains respond to our environments differently; whereas neurotypical brains are believed to readily adapt to the sensory and social input they receive from the outside world, Autistic brain development and pruning appears to be "disrupted."
Autistic people also exhibit less of what neuroscientists call global-to-local interference: we are inclined to zero in on small details, even when those details don't jibe with the overall "big picture" that a non-Autistic person might see. For example, one series of studies found that Autistic people are far better than allistics at copying down a drawing of a distorted 3-D object that couldn't exist in real life. Allistics got caught off guard by how impossible and illogical the overall image was, whereas Autistics could just focus on the individual lines and shapes that made up the image, and re-create the drawing from the bottom up. This high degree of attention to detail also applies to how we navigate social situations: we focus on the small features of a person's face rather than taking in their likeness or emotional expression as a whole, for instance.
31-32 [sensory processing; anxiety; "subclinical" Autism; accommodation]
Autism is diverse. Though the neurological and mental features of Autism cut across a wide swathe of people, the way it presents is always a bit different. In fact, Autistic traits can manifest in downright paradoxical ways. At times, I can be so intensely focused on a task (such as reading or writing) that the rest of the world entirely drops away. When I'm hyperfixating, I fail to notice things like someone speaking to me or smoke filling the room because I forgot to turn the oven off. At other times, I'm an anxious and distractible wreck, unable to make my way through a single sentence of a book because my pet chinchilla is hopping around in his cage and making the bars rattle. These two very disparate responses have the same root cause: the overexcitability of Autistic people's neurons and the inconsistent way that we filter stimuli (at least compared to allistics). We tend to be both easily disturbed by sound in our environment, and unable to tell when a noise actually merits our attention, at the same time. I often brute-force my way into paying attention to something by shutting the rest of the world out. I think it's also likely that lifelong masking has rendered me hypervigilant, almost as a trauma response. My sensory system is used to scanning the environment, to determine whether I'm alone and thus "safe" enough to be myself. Trauma survivors often become hypervigilant, which tends to come with intense sensory issues. Some researchers have also theorized that sensory issues in Autistics are, at least in part, caused by the anxiety and hypervigilance we experience from living in a world that doesn't accommodate us, and often treats us with hostility.
Most people have heard that Autism is a spectrum, and it's really true: each of us has a unique constellation of traits and features, all at various degrees of intensity. Some people are also subclinically Autistic, meaning they might not qualify for an official diagnosis, in the eyes of psychiatrists, but share enough struggles and experiences with us that they belong in the community. Relatives of diagnosed Autistic people, for example, frequently are found to exhibit subclinical traits. Of course, what's considered to be "subclinical" is often more a function of a person's ability to hold down a job and conform to societal rules than it is a reflection of how much they are suffering.
"Everybody is a little bit Autistic," is a common refrain that masked Autistic people hear when we come out to others. This remark can feel a bit grating to hear, because it feels like our experiences are being downplayed. It's similar to when bisexual people get told that "everybody is a little bit bi." When most people make remarks like these, they're implying that because our difference is so universal, we can't actually be oppressed for it, and should just shut up about it. However, I do think that when allistic people declare that everyone is a little Autistic, it means they are close to making an important breakthrough about how mental disorders are defined: why do we declare some people broken, and others perfectly normal, when they exhibit the exact same traits? Where do we draw the line, and why do we even bother doing so? If an Autistic person benefits from more flexibility at work, and more social patience, why not extend those same benefits to everybody? Autistic people are a normal part of humanity, and we have qualities that can be observed in any other non-Autistic human. So yes, everyone is a little bit Autistic. That's all the more reason to broaden our definition of what is deserving of dignity and acceptance.
74 [therapy/training; emotional dysregulation]
Therapy that is focused on battling "irrational beliefs," such as cognitive behavioral therapy (CBT), doesn't work as well on Autistic people as it does on neurotypicals. One reason for that is many of the fears and inhibitions of Autistic people are often entirely reasonable, and rooted in a lifetime of painful experiences. We tend to be pretty rational people, and many of us are already inclined to analyze our thoughts and feelings very closely (sometimes excessively so). Autistics don't need cognitive behavioral training to help us not be ruled by our emotions. In fact, most of us have been browbeaten into ignoring our feelings too much.
114-115 [sensory processing/overload; anxiety]
One of the most common and subtly debilitating experiences Autistics have is sensory overwhelm. I've already described how the bottom-up nature of Autistic sensory processing leads to us being overstimulated and easily distracted by things like ambient noise and visual clutter. There is an additional neurological feature of Autism that contributes to our sensory issues and meltdowns in a significant way—our difficulty adjusting to a stimulus over time.
Neurotypical brains engage in sensory adaptation and habituation: the longer they are in the presence of a sound, smell, texture, or visual cue, the more their brain learns to ignore it, and allow it to fade into the background. Their neurons become less likely to be activated by a cue the longer they are around it. The exact opposite is true for Autistic people: the longer we are around a stimulus, the more it bothers us. As I've already mentioned, our neurons are also "hyperexcitable," meaning our senses get set off more easily by small input that neurotypicals don't even notice, such as a hair falling into our face or a pile of mail being left on our desk. We're better at noticing small details and changes in our environment, which can be a real advantage for meticulous work, but we are also more prone to being startled or distracted.
When an Autistic person is flooded with upsetting sensory information for too long, they enter a state of sensory overload. Sensory overload can look like a temper tantrum or a crying fit, it can take the form of a shutdown or meltdown, or it can present as the Autistic person becoming confused and responding to questions in routinized or nonsensical ways. Sensory overload makes it hard to complete complex tasks, think through things rationally, or manage emotions. When we're overloaded, we become irritable, or filled with despair; we might even start self-harming to get an endorphin rush or ground ourselves. Our bodies are visibly tense with anxiety, and we're difficult to engage with during these times. What non-Autistic folks often don't realize is that Autistic people experience intense sensory input as if it were physical pain.
Unfortunately, when an Autistic person complains about the sensory pain they're in, people think they're being overly dramatic, needy, or even downright "crazy." I can't fully convey how frustrating it is to be in deep distress over a persistent noise my boyfriend can't even hear. When I find myself stomping around the house anxiously, pounding on the floor with a broom to get my neighbor to turn down her music, I feel like I'm being "crazy." My partner knows I"m not making this stuff up, and he tries his best to be accommodating and patient. But for most of my life, people were unsympathetic to my sensory complaints. They acted as if I chose to be distracted and furious every day.
133-135 [stereotypes; masking; defense mechanisms]
As real, living people, Autistics are forever running away from the "asshole genius" trope. In a 2016 survey of college students' attitudes toward Autistics, psychologists found that people associated neurotype with introversion, social withdrawal, and having a "difficult" personality. These stereotypes of Autism existed before shows like The Big Bang Theory and Rick and Morty, but those portrayals certainly reinforced biases that were already there. In the average person's mind, there is a singular image of how Autism presents in adults: a genius, almost always a man, who is blunt and direct to the point of cruelty.
To avoid embodying this trope, Autistic people fold ourselves into all kinds of accommodating shapes. We do what we can to not seem difficult, cruel, or self-absorbed. We internalize the message that talking about ourselves and our interests bores other people, that we're socially inept and bad at reading emotions, and that our sensory needs make us big babies who never stop complaining. For fear of becoming a Sherlock, we morph ourselves into Watsons: agreeable, docile, passive to a fault, always assuming that the larger personalities around us know what's best.
Masked Autistics are frequently compulsive people pleasers. We present ourselves as cheery and friendly, or nonthreatening and small. Masked Autistics are also particularly likely to engage in the trauma response that therapist Pete Walker describes as "fawning." Coping with stress doesn't always come down to fight versus flight; fawning is a response designed to pacify anyone who poses a threat. And to masked Autistics, social threat is just about everywhere.
"Fawn types avoid emotional investment and potential disappointment by barely showing themselves," Walker writes, "by hiding behind their helpful personas, over-listening, over-eliciting or overdoing for the other."
Walker notes that by never revealing their own needs or discomfort with other people, fawners spare themselves the risk of rejection. But they also fail to connect with people in any meaningful way. It's a lonesome state to live in. It's also deeply draining. Many masked Autistic adults struggle to balance full-time work with social lives or hobbies at all because maintaining a conciliatory mask for eight hours per day is just too labor intense to have energy for anything else. The connections we do form may never feel satisfying or authentic to who we truly are, because they rely on us meeting people's needs reflexively and always telling them what we think they want to hear.
136-137 [masking/mirroring; conflict; defense mechanisms; emotional dysregulation]
The impulse to fawn that Finch describes is very familiar to me. I find it easy to correct a coworker if they make a factual statement that's wrong, but when I was trapped in an abusive relationship with a person I deeply loved, contradicting him terrified me. Just the idea of telling him that he'd treated me unfairly made me want to sputter and flee the room. Years later, I still have trouble criticizing people, including those who make me feel safe and accepted. My brain knows better, but my body expects a rage outburst all the same. Autistic people are at an increased risk of domestic abuse, in part because we tend to be a bit gullible or overly trusting, and are quick to alter ourselves to placate others. When you're tapped under the mask, all love feels conditional. It's hard to know which needs are acceptable to voice. It's also easy for us to feel responsible for serving as an intermediary or peacekeeper when any tension arises between other people, because for us, conflict can be very dangerous.
Some psychological research suggests that there are heavy emotional and relational costs to constantly aiming to please other people and project back at them the motions and responses they wish to see. One common fawning tactic among Autistics is mirroring: lightly mimicking the actions and emotions of another person, trying to meet the energy they are giving off so that they view us as normal and similar to themselves. However, paying close attention to a person's actions and feelings and then mimicking it as best you can is a very cognitively draining and distracting endeavor. A study by Kulesza and colleagues (2015) found that when experimental study participants were asked to subtly mimic the behavior of a conversation partner, the mimicker actually had a harder time recognizing the emotions of the person they were mimicking. Even though the (neurotypical) participants in the study were successfully imitating the emotional displays of their conversation partners, they were so focused on the performance that they stopped really thinking about what those emotional displays meant. This study has not been replicated in an Autistic or neurodiverse sample, but if mirroring other people is so mentally labor-intensive that it reduces the empathy of neurotypicals, it's likely true of Autistic people as well. In fact, these results suggest that all the attention we put toward masking our own emotions and mirroring another person's contributes to our struggles with empathy in the first place.
Since Autistic people often struggle to identify our emotions as well (particularly in the heat of a stressful social interaction), we often have a hard time recognizing when someone's actions have hurt us or made us uncomfortable. It takes time for me to reflect on how and why someone's actions might have hurt me. Autistic sex educator and writer Stevie Lang has observed that Autistic people sometimes find it challenging to negotiate sexual consent as well, because we can't always tell the difference between wanting something, and wanting to want it in order to make someone else happy:
"Our aversion to rejection and desire to be accepted may make it difficult to know when we are experiencing consent," he writes, "and when we are trying to conform to social expectations to be liked or to avoid rejection."
Ultimately, all masking is about setting our feelings aside so we can focus on pleasing others or conforming to social norms. This is always going to be a self-destructive values system to live by, regardless of the coping mechanisms we use to prop it up. Whether we use alcohol, excessive exercise, overwork, social isolation, codependency, or some other self-destructive strategies to help us blend in, it's always going to be damaging to put social approval and "passing" as neurotypical above our actual needs.
We don't actually have to live this way. Autistic people can learn to listen to ourselves again, challenge the shame society has pushed on us, and become radically visible and outspoken about the accommodations we require and deserve. It may be challenging and daunting to detach from years of reflexive, self-protective masking, but a life free from its confines is possible for us.
139 [acceptance; questioning; masking]
Let's start at the beginning: the first step of the unmasking process is realizing you're Autistic. It might not feel like it's an active step toward self-acceptance or authenticity, but coming to understand yourself as disabled is a pretty dramatic reframing of your life. Almost every neurodiverse person I've spoken to for this book shared that discovering they were Autistic was a powerful aha moment, one that prompted them to rethink every narrative they'd believed about who they were. Painful labels they'd carried around inside themselves for years suddenly didn't seem as relevant: it wasn't that they were stupid, or clueless, or lazy, they were just disabled. It wasn't that their efforts had never been enough, or that they were fundamentally wrong or bad. They simply hadn't been treated with the compassion they deserved, or given the tools that would have allowed them to flourish. Naming their position in society as a disabled person helped them to externalize that which had long been internalized. It proved that none of their suffering had been their fault.
Of course, adopting an Autistic identity doesn't instantly undo the habitual camouflaging and compensation that so many of us have had to default to. Much like the hyperviliance that's common to trauma survivors with PTSD, masking is a reflex that comes out most intensely when we experience uncertainty or social threat. And recognizing oneself as a disabled person certainly doesn't make the world seem any less confusing or threatening. However, accepting ourselves as Autistic does free many of us (perhaps for the first time) to question whether it's fair that we be expected to live in such a concealed, apologetic way.
The process of unmasking is all about rethinking the beliefs and behaviors that seemed normal prior to discovering we were Autistic. It means reexamining the stereotypes about Autistics (and other disabled people) we've been exposed to via media, education, and formative experiences in our youth. It requires we question society's most deeply cherished values, and notice where there are gaps between what we've been told we should be, and how we'd actually like to live. Finally, unmasking demands that we look back on our past selves with a spirit of grace, gradually learning to see that the sides of ourselves that we were told were too loud, too stilted, too weird, or too much are actually completely fine, even wonderful, and absolutely deserving of love.
143 [stereotypes; accommodation; empathy]
Kurcinka asked that parents try to reframe their kids' "problem" traits as positives. Many of a kid's most disruptive behaviors were signs of their independence and will. As disability advocate Rabbi Ruti Regan writes on the blog Real Social Skills, "noncompliance is a social skill." It's only "bad" if you're looking at it from the outside, from the perspective of someone who seeks to control or restrict. Though Autistic people are stereotyped as lacking empathy, it's frequently non-Autistic teachers and caregivers of Autistic children who fail to reflect on their interior experience, and the motives and feelings that make their behavior make sense. A noncompliant child may be stressful to raise, but if you want your kid to become a strong, healthy person with the power to self-advocate, it's crucial they know how to stand up for themselves and say "no."
170 [sensory processing; empathy]
Experimental research shows that many Autistic people have trouble ignoring visual "noise," to the degree it really disrupts our processing. Clutter can erode our focus, making it hard for us to think clearly or regulate our emotions. A study of Autistic schoolchildren found that many had trouble paying attention in classrooms where the walls were covered in distracting, bright posters, and the shelves were stuffed with books and toys. Most children's spaces are very busy and bright, despite how negatively this impacts Autistic kids' processing. It's no wonder that Moorea Seal became known for her minimalistic, sleek aesthetic. Lots of neurodiverse people crave spare or even Spartan surroundings. It's less to keep track of, less to clean every week, and less to pack up when it comes time to move. It's also very on-trend: minimalistic design, capsule wardrobes, and throwing away items that cause clutter and fail to "spark joy" (a la Marie Kondo) have all become immensely popular in recent years because it is so visually soothing and practical.
That said, not all Autistic people are well suited to minimalism. Marta Rose observes that objects carry a very strong significance for Autistic people, so tidying our living spaces up and throwing things away can be very difficult. Many of us identify with the items we love, and even feel a degree of empathy for them, as if they were alive. Psychologists call this phenomenon object personification, and Autistics exhibit it at an elevated rate compared to the neurotypical population. We also tend to connect emotionally with animals more readily than people, which can also influence how our home environments should be arranged.
174-175 [masking; sensory processing; accommodation]
The schedules and work habits of Autistic people challenge the prevailing neurotypical, one-size-fits-all conception of time. Like Sue, many of us are able to complete a great deal of work in a single hyper-focused burst, though typically we'll need much more rest and recovery in order to sustain such efforts. The sleep-wake cycles of Autistic adults also differ, on average, from the circadian rhythms of neurotypicals, and many of us experience sleep disorders. One reason that we may need more sleep than others is just how tiring it is for us to be in the world. Sensory overload, social overwhelm, and the pressures of masking all significantly drain our batteries. This means many of us are not well suited to a nine-to-five job, and keep other hours instead.
Of course, industrial-organizational research suggests that actually very few people thrive in a rigidly structured eight-hour work environment, regardless of disability status. Most workers are only capable of truly focusing and being "productive" for about four hours per day. Long workdays and long commutes erode a person's life satisfaction, job satisfaction, and their physical and mental health. In addition, many of the features of the neurotypical workplace are distracting and anxiety-provoking for allistics as well as Autistics. Allistics just tend to be better positioned to push through the discomfort of bright fluorescent lights or a coworker's pungent cologne. In this way, to acknowledge the needs of Autistic workers is to listen to the canaries in the coal mine: our sensitivities and needs help lay bare just how unfair many work expectations are, even for neurotypical people.
193-194 [masking; conflict; defense mechanisms]
Unmasking isn't a universally positive experience; sometimes when we put ourselves first, we will frustrate and disappoint others, maybe even leave them feeling triggered or upset. It's vital we learn to navigate interactions marked by conflict, and practice standing firm in the face of negative reactions from others. As long as we haven't abused anyone or violated their rights, it's okay for our actions to make others unhappy. After all, neurotypical people step on conversational toes and continue breezily along all the time. Neurodivergent folks should, at the very least, be given the latitude to be flawed, fully present humans as well.
In many ways, masking is psychologically similar to codependency, a relational pattern of seeking to manage or control the reactions and emotions of other people that usually results from abuse. Unmasking requires we stop relying on neurotypical people's acceptance in order to guide how we should act—and that means sometimes doing the "right" thing even when we know it will rub others the wrong way. Most masked Autistics need a lot of practice developing a strong sense of discernment, which is essentially using our own beliefs and perceptions to guide our behavior, rather than deferring to everyone else's fleeting reactions and impressions. Maskers tend to get very distressed when people are unhappy with us, because disapproval has been so dangerous and painful for us in the past. Many of us will do nearly anything to keep other people satisfied. Learning to tolerate the distress of upsetting someone is crucial to developing reliable self-advocacy skills.
Maskers are highly dependent on the opinions and feelings of other people. We bend over backward to make life easy for neurotypicals and the people we care about, we hide facets of ourselves that are distracting, weird, or inconvenient, and we become hypervigilant about tracking people for signs of disapproval. It's normal and healthy to be considerate toward other people, but masked Autistics tend to devote so much energy to people pleasing that we have almost no cognitive space left to think about (or listen to) ourselves. It also impedes us from connecting with people in a genuine way. You have to really recognize a person's emotions—good and bad—and respond to them honestly in order to forge a bond. Surface-level smiling and mimicry makes it harder to see and appreciate people in all their complexity.
Unmasking in public feels nearly impossible, because when we are around people, it's as if we have no thoughts or feelings of our own. I've been in that position myself, so profoundly inhibited I had no idea what my genuine preferences were, unable to recognize someone had crossed a boundary or made me uncomfortable until hours after the fact, when I was alone and had space to reflect. Though I wish I could present unmasking as a singularly positive experience where you unburden yourself of all anxiety and venture out into an accepting, enlightened world, I know for a fact this isn't the case. Often it will be nerve-racking and awkward. We have to choose to unmask because we recognize masking is hurting us, and that it is worth being subjected to neurotypical disapproval in order to claw our way out of that trap.
212-213 [acceptance; accommodation; self-advocacy]
I used to believe I was horribly inept for not being able to read between the lines of neurotypical speech. Now I realize most neurotypicals aren't all that good at it, either. Non-Autistic people process complex situations intuitively and efficiently, but make a lot of errors. Just think of how many times you've seen a really confident, outgoing person misread a situation, interrupt another person, or say something offensive without seeming to realize it, or to care. There are negative consequences to such actions, but usually the allistic person who made the error doesn't have to bear the brunt of them. It's everyone around them who has to scramble to pick up the pieces, clarify the misunderstanding, or smooth over hurt feelings. One of the most liberating realizations I've made as an out Autistic person is that it's not harmful for me to ask questions, interject when needed, or be honest about how I feel. When you tell people what you want and need, you actually stand a chance of getting it. You also free up other people to express their needs more openly, too.
217 [acceptance]
For many masked Autistics, learning in adulthood that you have been secretly nursing a disability all your life is quite the world-shattering experience. Adjusting your self-concept is a long process. It can involve mourning, rage, embarrassment, and dozens upon dozens of "wait, that was an Autism thing?" revelations. Though many of us come to see Autistic identity as a net positive in our lives, accepting our limitations is an equally important part of the journey. The clearer we are with ourselves about where we excel and where we need help, the more likely we are to eke out an existence that's richly interdependent, sustainable, and meaningful.
232-234 [accommodation; lineage]
As the psychiatric anthropologist Roy Richard Grinker writes in his titular book, Nobody's Normal, our current definition of mental health is tied to the state and employers' desire for productive, inoffensive conformity. Emotions that are too large, passions that are too childish and not profitable, habits that are too repetitive, and bodies and minds that require daily assistance all challenge this incredibly narrow definition of health. It is only by expanding our definition of what is acceptable human behavior and working to meet other people's manifold needs that we can move forward.
Many people who are categorized today as disabled or mentally ill might have functioned just fine outside of an industrialized capitalist economy. Someone who might thrive as a hunter, midwife, storyteller, or seamstress in a more interdependent society may appear dysfunctional if trapped in an office. In fact some genomic evidence suggests that when humans moved away from hunter-gatherer-based societies and toward agrarian (and later, industrial) ones, alleles that predict neurodivergence became a disadvantage. For example, in societies where daily life offered less stimulation and novelty than a life of hunting and gathering did, ADHD traits turned disadvantageous. Some researchers have theorized that the same is true of Autism, but much of the research on the subject is quite poorly done, because it assumes Autism must have always been a pathology and an impairment to reproductive success. We don't really have a good reason to believe that is true across all societies and all periods of time, though. Our ways of living and of caring for each other are so numerous, and haven't always been as atomized as they are today.
Many neurotypes simply are not suited to long workdays, lengthy commutes, nuclear families, and isolated "independence." Arguably, none of us are well suited for that—the nine-to-five workday is not evidence-based—but some of us suffer more visibly and pervasively than others. By tearing down our current, constricting definition of mental health, and celebrating different ways of thinking, feeling, and behaving, we can improve countless lives. By reworking society to make it more flexible and accommodating of difference, we can improve the mental and physical health of all people. In this way, unmasking is a political goal. It requires we place value on all human life, no matter a person's abilities or needs, and view society as a social system that exists to care for all people—not an apparatus to make everyone as productive as possible.
Images
Clouds - up
Eyes - Sam Mohler
Creepy people - "Burn the Witch" - Stanley Donwood for Radiohead
Memes - reddit.com/r/autism