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I'm the author of UNMASKING AUTISM, a new book about hidden and under-diagnosed neurodivergence. My book explores why so many Autistic trans people, women, and people of color end up having to “mask” their disability, and how they can learn to unm...
PROOF: https://i.redd.it/kv0yy5psyln81.jpg
Hi Reddit! I’m Dr. Devon Price (he/him), and I’m a social psychologist, professor, Autistic person, and the author of Unmasking Autism: Discovering the New Faces of Neurodiversity.
I found out I was Autistic in my late 20s, after years of avoiding other people, gritting my teeth through daily sensory issues and meltdowns, and letting my productivity determine my worth.
I started doing research, and discovered Autism is a lot more diverse than the average person realizes. We aren’t all white cis boys from well-off families who are obsessed with trains. We aren’t all flat-affected and science-minded either. Many of us are creative, emotionally expressive, and attuned to the needs of those around us. A lot of us are gender minorities who have never been able to follow the rules dictating what a “man” or a “woman” should be. Lots of us are from marginalized racial and socioeconomic backgrounds.
My research revealed to me that there is an entire massive, stealthy population of Autistic people who don’t fit the stereotypical mold, who have been forced to “mask” their symptoms and struggles for years. Masked Autistics learn to camouflage and compensate for our challenges from an early age in order to survive. We mirror the neurotypical people around us, and feign eye contact by staring at people’s foreheads. We memorize social scripts from movies and TV. We drink or use drugs to cover up our sensory issues. We smile and laugh our way through confusing social interactions to avoid seeming “weird.” It’s deeply emotionally corrosive and exhausting, to hide who we truly are so pervasively.
In my book, I review the literature on masked Autism, profile a diverse array of Black, brown, trans, gay, and female Autistics, and provide a variety of exercises for those exploring a neurodivergent identity. I also worked with Autistic therapists and coaches to develop tools designed to help people “unmask,” and tested all those tools on myself before putting them in the book. I’m passionate about making the world a more accepting place for all disabled people, and about empowering Autistics to live more vibrantly and defiantly as themselves.
Here are some pieces I’ve written about masked Autism in the past: - The Issues with ‘Aspergers’ - My Autism Checklist - Wentworth Miller and Masked Autism - An Autistic Social Butterfly’s Guide to Making Friends AMA!
devon_price80 karma
Yes! One person that I profile near the end of the book radically changed her entire life to allow herself to unmask more fully -- she quit a stressful job in the legal profession, stopped wearing suits and getting expensive professional haircuts and manicures, moved to the countryside with her spouse and started living at a much slower pace, wearing messy buns and sweatpants and napping a ton.
She isn't Autistic. At all. But her stepdaughter is! In the pursuit of making a life that was more comfortable for her Autistic child, she found out that the life she had been leading was not authentic to who she really is and what she really values, either.
All the tools in the book are for *anyone* who wishes to stop faking who they are and begin living a more authentic life. And the profiles throughout the book are really just general human stories of people choosing to stop conforming and begin being who they really are. That's not an experience unique to Autistics.
TexasChainsawManowar35 karma
Hello! Love your work! I’ve been wondering a lot about rejection sensitivity issues that seem to plague folks on the spectrum. Also I notice that the prevailing culture really emphasizes independence and not asking for help or support from a community. How does one make the distinction between problematic neediness/rejection sensitivity and getting your actual social needs met? Thank you!
devon_price76 karma
I'm of the opinion that "rejection sensitivity dysphoria" as a distinct problem or symptom doesn't exist, and that instead what we call RSD is actually a blend of attachment distress, social anxiety, hypervigilance related to trauma, and rumination about social rejection that is all rooted in genuine life experiences.
There is no doubt that Autistics and ADHDers (as well as others) struggle with the fear of being abandoned, and we tend to read a lot of negative feedback into neutral responses and see rejection when it isn't there, but this happens because we've lead entire lives filled with subtle mockery, abandonment, and rejection for doing things "wrong" socially that we don't even understand or recognize as wrong. We fear rejection really acutely because we know our social position is extremely perilous, and we've been burned before. In high school, I lost a dear friend whom I'd known for years because (from my perspective) I'd made a single statement that I considered to be a neutral observation, but that she considered to be a rude insult. She wasn't even wrong to feel that way -- I didn't realize how my words were coming across. I'd probably unwittingly hurt her feelings many times, and had absolutely no idea.
My life is filled with stories like these, moments where I was rejected or turned away because I'd been doing things "wrong" for ages, but nobody had ever told me. How can you not fear rejection around ever corner when your life is like that!
A neurodivergent person whom I interviewed for my book was fired this week at their cushy tech industry job because they'd been too "negative" at work (all they had done was point out clear problems in the workplace's diversity and inclusion practices). People misread the tone of their emails -- the emails were "too long," which suggested hostility. This person is incredibly patient, thoughtful, and diplomatic. They'd carefully edited every email they ever sent to make it as softly worded as possible. Yet still they were rejected for telling the truth of their opinions, and for providing too much detail, which made the neurotypicals around them uncomfortable.
As your comment points out really well, there is no objective standard of how much reassurance seeking is "too much," how much insecurity is normal, and how independent a person is really "supposed" to be. What we typically label as a dysfunctional amount of reassurance seeking or insecurity is really just a quantity that sticks out in our really individualistic and ableist culture. It's actually fine and natural for us to be interdependent. Even neurotypicals find it much easier to look after other people than to look after themselves when they are alone.
We need one another, and when we are abandoned, it's a dire situation. Without enough social contact and emotional support, people's immune systems worsen, their heart health plummets, and their mortality rate skyrockets. So I really don't think it's unusual or a sign of mental illness to fear rejection as much as neurodivergent people commonly do. A behavior driven by rejection sensitivity can be intrusive or abusive potentially, and we can focus on problem behaviors that either hurt other people or are ineffective -- but there is nothing wrong with needing a lot of social contact and reassurance itself.
Yaksher12 karma
I can't believe it, I've always struggled with the symptoms described by RSD, and by extension your opinion of what is it, but have always chalked it down to social anxiety because I had never heard of RSD. Reading through these symptoms explains how I've felt for the last 10 years and I feel like I've just discovered gravity haha.
One symptom that is the most distressing for me is crying and basically anything - criticism, explaining my feelings, discussing health issues, when someone disagrees heavily I can feel the tears starting. Is this an RSD thing?
I plan to purchase your book at a later date, but for now do you have any online resources you could point me towards. Thanks!
devon_price20 karma
I really like how the comic artist ADHD Alien illustrates rejection sensitivity and the overwhelming feelings (and yes lots of crying!) that come up when many neurodivergent people feel that they have socially failed. I'd check their work out!
berkcat0730 karma
How do you, or from your work, see how to resist the societal pressures to "change communication styles"? such as making more eye contact, etc. feels very insidious
devon_price63 karma
It *is* very insidious! I've had to get more comfortable with other people being uncomfortable. My masked self is this officious, chipper little people-pleaser who is hyper aware of everyone's reactions to me (and to other people), who wishes desperately to make sure everyone is accommodated and entertained -- except for himself. It's miserable and exhausting and sometimes my attempts at communicating the way I think people "want" me to are just annoying and overbearing, or overly conflict averse.
I've had to stop pressuring myself to be so pleasant and give myself permission to be disappointing to others. Often at work I am really a buzzkill to be around -- I don't bring the smiling, bright, compliant energy that is expected or that many of my colleagues feel they must project. I just say what I think, in as simple a way as possible, using a flat tone of voice and faking very few emotional expressions. It might make people feel sad to not get that fake sunniness beamed at them, but I really don't have the heart to do it anymore. Not after a lifetime of masking and years of a global mass death event. And ultimately, being a bit more flat affected frees up other people to show up more honestly too.
It's hard though. I'm very fortunate in that my job does not require the emotional labor of faking a bright personality the way food service, nursing, therapuetic work, and education often do. But we are in the midst of the great resignation and more and more workers are feeling free to bring a flat, so-done-with-this attitude to work and I encourage people to keep that going! Preserve your energy! Test the limits if you can. Give yourself permission to leave other people feeling awkward or underwhelmed. Their emotions are not something you are in control of or responsible for. Or you shouldn't be anyway.
Outside of work, the stakes are often lower and so there is even more room to play with disappointing people. Find safe friends to practice not making eye contact with. And really release the pressure you put on yourself when interacting with people you aren't invested in a relationship with -- like honestly, who cares if a total stranger at a party things you're weird for looking at their shoes while you talk. If they can't handle that they aren't gonna be a good friend to you anyway.
Pioulechauve13 karma
That's funny, because when i was kid/teenager, i was a really bright person, but in my early 20s, after a year and half of a nerdy/jobless life at my parent's house, i kinda "lost" my "socials abilities". Now when people are talking to me, i always feel akward, have very few facial expressions so people talking to me feel a bit akward to at first.
But in the other hand, online when i'm talking to friends, i'm still the dude i was 10-15 years ago, sincerely laughting all the time. And when we met IRL i'm back to the akward dude. (not thaaaat akward too tho, i never had problems with that, i think ?)
devon_price40 karma
okay yes I gotta respond to this, thank you for bringing this up.
For many Autistic people, masking means learning to fake a bright professional neurotypical personality, but it also means becoming deeeeply inhibited. Don't bounce in place on your heels. Don't talk about your passions "too much." Don't hand flap. Don't be weird. Don't sing along to your favorite music.
As I grew from a quirky kid to a repressed adult, I became less joyous and expressive too. So much more filtered and inhibited, and out of touch with my own joy. So for many of us unmasking does also mean learning to experience joy more openly again -- and not feeling ashamed of our positive emotions and passions. One great place to do this is online, and another that i mention in the book is the power of nerdy conventions, conferences, meetups, etc where a lot of people are likely to be super Autistic and awkwardly, adorkably passionate.
Pioulechauve0 karma
Thank you for answering, it was really interesting.
I had no idea about masks since i'm working with people that are 100% autists, the kind that smash their head to walls corner because they saw a light too bright 2 days ago. We are watching them out and giving them medicine just to prevent them to be violent or harm themself. And i can tell you, they do not have masks at all.
So i always though that becoming so serious and boring at work was just growing up. When i'm seing my coworkers, seing them being "childish" at work made me think that they had maybe they have all an issue, since we are at work to work and not to have fun or make friends you know ? In my mind being serious and boring at work is how we should act.
But that combo plus my lack of social ability isbstarting to make me think i'm the one with an issue now ahah.
devon_price3 karma
It sounds like you could stand to unmask a bit once in a while yourself, yeah! It's a shame we consider being completely flat and boring to be the mark of adulthood -- and that we consider seeming "adult" the only way to be respectable and deserving of rights in society. Some people are "childish" forever. Children are people deserving of respect, too. There are so many aspects of ourselves we are taught to hide and cover up with a professional, flat veneer, but life can be more joyful and open than that.
cold_dark_matters22 karma
Hi Dr. Price,
I'm a late diagnosed autistic and also Deaf. For many years, professionals brushed my issues under the Deaf/Hard-of-hearing umbrella.
Now I'm seeing other adult Deafies coming out as late diagnosed autistic and/or ADHD - that seems in line with many other groups that got brushed aside.
What's your take on this?
devon_price29 karma
Autistic people with other disabilities are one of the major categories of "masked Autistic" people I discuss in my book! Because of how these assessment processes were designed and because of most psychiatric professionals' biases, Autistic people with other disabilities get overlooked a ton. For both Deaf and Blind Autistics I suspect under-diagnosis is extremely common, because most assessors are hearing and sighted folks who already perceive Deaf and Blind people as socially "different." A lot of differences in social and emotional displays might be written off as """just""" you being Deaf. The social norms and scripts for sign language communication are so different from verbal communication, and unless your psychiatrist is also Deaf they're not going to be really perceiving you fairly or accurately during assessment.
Thejediwolf3 karma
I have schizophrenia, which i was diagnosed with at 19, but I didn’t find out I was autistic until 30. Like you I am highly attuned to others emotions and slight changes in the way they respond when I say something they don’t like, but I find most conversation exhausting and am selectively mute with a blank expression or awkwardly smiling and nodding wanting to flee when I am uncomfortable, which is with anyone until I get to know them well. I am also non-binary and half Mexican, not the stereotype of a privileged cis male. Your book seems fascinating.
devon_price2 karma
I think you would see yourself and your experiences reflected in many of the people I interviewed for this book! I certainly relate hard to what you've just described about going blank and losing speech... it can feel like my life force has just been completely sucked out of me and I need to mentally escape the world. It also reminds me of how my friend Angel (who is nonverbal) describes dissociating when he's overloaded: https://devonprice.medium.com/those-blurry-people-f4228003194e
Zeego12316 karma
Do you believe that the "natural self" or the "true self" or even the "self" at all is an independently-existing entity, or just a concept that exists in the perception of the individual? Ever since I first experienced depersonalization several years ago, I've been convinced that my "self" is an illusion that I can only maintain when all the parts of my mind are working in unison rather than separately.
devon_price27 karma
Yesss let's get philosophical with it. There is no "true self" in the sense of there being some crystalized, permanent identity that we always are true to, or can be true to. Humans are far too dynamic and influenced by context and sociality for any of that.
Here's how I think of it: there is no final state of true authenticity to arrive at, but there sure as hell is an experience of not being true to ourselves. Ask any closeted person who is being eaten alive by that shame.
Authenticity is not an end state, because who we are forever keeps changing. It's all about avoiding inauthenticity and getting better at listening to our real emotions, physical needs, preferences, joys, pleasures, etc as they occur. And those things will always keep occurring and shifting, as we and our environment changes. We're like little dandelion seeds casting on the wind -- we can follow those winds or we can fight them. It's better if we accept and listen to them.
HyrrokinAura15 karma
I haven't been able to buy your book yet but hope to. Do you have any advice for people who cannot seek formal diagnosis due to cost, but who might have to ask for accommodations in the workplace? In my experience accommodations are made grudgingly or not at all, and can lead to the ND person being demoted or fired for asking the company to do something outside the norm. I have enough trouble just getting someone to hire me & don't want to seem like a troublemaker because I need a more isolated /quieter place to work (in the positions I qualify for, the Holy Grail of work from home is rarely offered.)
devon_price41 karma
Professional diagnosis is highly overrated. It's expensive, it's rarely covered by insurance if you're an adult, and all the tests you'll be asked to undergo are based on how Autism looks in young white, cis male children. Adults who go to get assessed for Autism often get turned away for things as simple as wearing makeup, being polite, or being female (seriously). And even if you do get an assessment, it may take the form of being asked to explain the plot of a children's picture book, and other tasks designed for kids under five. the process is a joke, honestly.
For these and many other reasons, I and most of the Autistic self-advocacy community support self identification. If Autism is not a disorder to be cured, but rather a normal source of human diversity, why should it need to be diagnosed? We don't require people to be diagnosed as trans anymore to access trans healthcare, tho transness was also considered a mental disorder in the past. It's the same thing here. We are a diverse community that needs acceptance and support, not a disease to be identified medically.
All that said, in order to access legal protections under the Americans with Disabilities Act, you sadly do need a formal diagnosis! And even if you do get one, you might still be fired for asking for the accommodations you need, tho your employer will make up some other pretense for doing it. It's very difficult and expensive to pursue a disability discrimination case, so sadly many employers get away with very flagrant discrimination.
I wish I had better advice to offer. You will know the specifics of your situation and the vibe of the place where you are working best. You are correct to worry that asking for dimmer lights or more break time or whatever else you need might result in you getting treated poorly or being fired. Unfortunately, this happens pretty often. In the book I cite statistics on this -- the majority of Autistics who come out at work end up regretting it. The solutions we need are systemic: an end to at-will employment states (which make it possible for you to be fired for any reason at any time), expanded legal protection for disabled people that makes it easier to sue for discrimination, and far more social welfare benefits for disabled people, so we don't risk homelessness and starvation ever single day simply for being ourselves.
fiberholic11 karma
Hey do you have any advice for setting boundaries and maintaining boundaries?
devon_price37 karma
Boundaries are all about what you do. You can't force another person to behave or to feel a particular way, but if their actions make it clear they don't respect you, then you need to take action to protect yourself and assert your own agency. Walk away, hang up the phone, interrupt them and tell them you are not comfortable answering that invasive question, say no to an unreasonable request without providing any apology or explanation, stop hanging out with someone if they repeatedly misgender you without ever trying to fix it, etc. A boundary is always defined by what *we* will do to enforce it, if the other person does not respect it.
fiberholic10 karma
That’s really great advice. What do I do when I can’t maintain my own boundaries due to learned helplessness? How do I support changing contexts so that boundaries are reasonable?
devon_price30 karma
So if you struggle with learned helplessness, one thing you probably experience is a freeze or fawn response when someone socially threatens you or tramples all over your boundaries. I have this problem too. When someone is rude or invasive to me in person, in the heat of the moment I just want to make the tension go away. I'll smile and laugh or I will mentally go completely blank and cannot say a thing. This makes stuff like correcting misgendering really hard to do in real time. And this is very common for Autistics -- we need a lot of time to process our emotional reactions to things and may not even realize an experience was violating until way after.
If that is the case, that's totally fine. You'll just have to start by enforcing your boundaries in a non-synchronous fashion. It is totally normal and okay to have to email or text someone after the fact and tell them that something they've done needs to change. If the person actually respects you, they will take that message to heart, and believe you, and alter their behavior. They won't disbelieve you just because you took a day or two to advocate for yourself. If someone does not respect your boundaries, they won't respect you no matter how you transmit the message. And if that's the case... it's time to radically alter how or if you engage with them at all.
So for example, if my family repeatedly keeps misgendering me after me telling them multiple times (via email and text, after the fact) that them doing so hurts me ... I am gonna stop talking to them so often, or may cut them from my life. Or ensure I only visit with them with a friend or relative by my side who will correct misgendering in the heat of the moment for me. But ultimately, the response to a person who does not respect your boundaries, after a grace period of letting them know it's a problem (which you can do in a letter, a text, whatever you want), is to give them far less access to you. That's a huge component of boundary enforcement: not allowing people to get close to us if they have repeatedly trammeled over our trust.
enbysquad10 karma
Hi Dr. Price, really appreciate your work. Depressed, exhausted autistic person here. Really fed up of trudging through the mires of existence under capitalism etc etc. My question is, how do us introverted, kind of self isolating, prone to depression and anxiety folks go about finding and nurturing community?
devon_price9 karma
In my experience, the more authentic your relationships become, the less exhausting being around people becomes. I used to think I was a far less social person than I am now, because I equated being around others with being masked, repressed, and faking a personality that they would like. Now, I still do get socially overwhelmed and need lots of recharge time, but I have people who accept me so readily and warmly that being around them actually "fills my cup" energy wise some of the time. Like a lot of Autistics I also am a huge proponent of getting social needs met remotely as well as in person: lots of watching movies together on Discord, watching someone stream themselves playing a game, writing letters, exchanging voice memos instead of talking live on the phone, etc. That helps me feel connected but also free to step away. Though I do enjoy in person events too. I just need my quiet time.
Storm-Sufficient9 karma
Hello and thank you for doing this. Could you please tell me about some things your parents did or didn't do that are still with you to this day? Negative and positive. I ask because my son is 11 and has autism with low support needs and impulsive adhd. I want him to remember me as a good mother who loved him. What are some things a parent of an autistic child should or should not do to help their child grow up, in your opinion? Thanks and take care.
devon_price6 karma
I've been pondering this question for twenty four hours. Trying to be fair to my parents and come up with a few positive responses. Because what looms largest in my mind is all the things that damaged me. I'm so glad you are thinking about this, and wanting to do right by your kid.
My parents were very emotionally invalidating. I remember being yelled at to stop crying, especially when I got a little "too old" to be having tantrums and no one understood that I was having Autistic meltdowns. My family would make little remarks about the way I moved my body, how excited I would get over silly or juvenile things, and would make fun of me for crying at sad movies or because I'd gotten trapped mentally ruminating about some worst-case scenario that was never going to come to pass.
As a preteen, my mom said some things about how I had no friends and no hobbies that haunted me for years. I'm still trying to prove to her that I have a full life and that people like me. She made those comments because she was a lonely person (probably Autistic herself) and didn't want the same fate for me. But the way she went about it, she just passed her shame onto me. I always felt like my parents thought I was an oversensitive, weird loser, and that my only redeeming quality was how brilliant I was, and how great I was at listening to them. I grew up seeing myself as an extension of the adults around me, a little entertaining pet and proto-therapist who would hold onto all their difficult emotions for them, and be their friend when they had none. Meanwhile I had almost no friends of my own either (until high school). It was... really emotionally ravaging.
I did have one grandparent who helped me feel seen and heard. She was a reflective person, and a good listener. She and I would spent hours sitting on the couch just talking about feelings and complex ideas. She'd level with me about death, and sex, and physical disability, and divorce, and anything else I had questions about. We'd go on long car rides and shop in antique stores together and she would explain to me how the world used to work. She could admit tome when she had been wrong about things -- she apologized for getting frustrated and snapping at me, for instance, and told me about the racism she was raised to believe in and then moved beyond. She loved me, really loved me, and would hold me to her chest while I sobbed with fear about the future. She never told me I was too old to be crying, or that my interests were weird. She let me play the exact same Savage Garden song on a loop for her in the car over and over, even though I'm sure she hated the song she never let that show. She delighted in my happiness and cared about my ideas. She believed me about what I needed and cared how I felt.
I don't know your life or your kids' but I hope some of this is helpful.
I will also point to Nicole Cliffe's excellent observation though that there is no accounting for what your kid will and won't remember. Whole years of killer parenting disappear down the memory hole sometimes. Your kid will remember the failures more than the successess. It's just how it is. So don't hold yourself to a perfectionist standard and accept, to whatever extent you can, that you will hold the highlight reel in your memory for yourself, and that your kid might not.
hshoats8 karma
Hi, I’m a huge fan of your work, especially on medium. I’ve read some of your thoughts on this before, but do you have anything to say about how mental illness, especially ones considered more “severe” fit into the broader context of disability justice and neurodivergence liberation?
There seems to have been a major effort to depathologize and destigmatize autism and adhd in recent years (at least for powerful groups) and I’m wondering if you’ve seen similar progress doing the same for conditions like BPD, NPD, Schizophrenia, DID, DP/DR, etc. What do you think would help people better understand and empathize with those who have those conditions (especially autistic/adhd people who may normally ignore their struggles)? Also, what material changes need to occur (especially within the mental healthcare system) to liberate people who deal with conditions like those listed above? I suppose I’m also curious if you could elaborate more on the struggles and ableism faced by people with “severe mental illness,” both in the present and historically.
devon_price26 karma
This is a great question. I think what many people don't seem to understand is that the social and medical models of disability are not in opposition to one another, or they don't have to be -- if we had more patient-centered, liberatory approaches to healthcare. The fact of the matter is, some disabled experiences are painful. I'm proud to be Autistic, but having sensory meltdowns really sucks. In a more sensory friendly, accommodating world, I'd have a lot fewer meltdowns, and the social ramifications of having meltdowns would be less severe than they are now -- but I might still experience intense sensory pain sometimes, and then (as now) I might still seek out substances or medication that allievate the distress of that.
Some aspects of being Autistic are really hard and unpleasant, and naming that is not incompatible with approaching Autism as a natural source of human diversity to be accepted and embraced. Far too many people in the Autism self-advocacy world seem to operate under the notion that we all need to feel positively about our disabilities and never say anything bad about them. I don't think having warm positive feelings about being Autistic is the goal -- I think justice for all disabled people, in a material and structural way, is the goal. My friend Angel (who I discuss in the book) hates being Autistic sometimes. He has painful seizures and wishes he could communicate more easily. He still deserves a voice in the Autism self-advocacy world and he still deserves accommodations and justice.
There are a lot of disabilities and mental illnesses out there which are both very real and debilitating conditions, and are also common sources of human diversity in need of broader acceptance. Having paranoid delusions really sucks, but we need more than just a cure for those things or a medication that makes them go away -- we also need social supports and broader acceptance for people who experience delusion and psychosis. Having a depressive episode blows, and it's not wrong for a person to want to have their depression cured -- but we also need more relaxed social standards and more community support so that depressed people's lives can be easier. I think if the disability justice and Autistic self-advocacy community focused less on positivity and more on actual material justice, we wouldn't have this infighting that we currently have between people who love and people who hate their disabilities. We actually all have the same enemies to fight together.
sleepy_star_trash8 karma
excited to read your book! my question is: as i begin to unmask, i realize that i have been living as a version of myself that doesn't align with my true unmasked self. some parts of of the mask i put on i enjoy because it has helped me stay afloat financially, but now that i'm experiencing burnout it feels impossible to keep up. i want to transition to a life style (mostly i need to change how i earn income) that doesn't burn me out. how do i take a risk and do something more aligned with my needs without falling into the masked version of myself that i have previously relied on? (hopefully this makes sense!)
devon_price17 karma
From the sound of it, the income piece is really central here. And that makes sense, it is for most of us! Masking is pretty essential to keeping a job and getting the bills paid, sadly, at least for most of us. I don't know your situation, but if you are on the verge of Autistic burnout or already experiencing it, you can expect your functioning, productivity, and energy for masking to be depleted pretty significantly for the next year or more.
Hopefully it does not take that long to bounce back, but for many of us, needing a lot of recovery time is essential! And some of us never recover to our pre-burnout energy levels. We become different people to an extent. I know my capacity goes down more and more every year... and with that decline in energy and patience for bullshit, I am forced to be more and more honest with myself and others about who I am and what I need. It's actually been a positive thing for me.
I don't know your situation and it seems like it all comes down to what will pay the bills without making you feel anxious and exhausted. Are there ways you can alter your life to move at a slower pace? Can you cut back on any expenses or move someplace cheaper to live? Get roommates or downsize your cost of living in some way? Can you financially take the hit of going freelance or applying only to jobs with work from home options? I can't answer these things for you and I know most people feel really stuck in these regards. But it sounds like you know that what was once semi sustainable no longer is, and it might not ever be again. So something has got to give... and it seems like you are already looking ahead to that reality and troubleshooting what your next step might be.
I know a lot of Autistic people who have stepped down from rigorous jobs in fields like fundraising, advertising, academic research, nonprofit management, and more, pivoting from those grueling fields to part time work, bartending, freelance coding, doing odd jobs for friends, etc. Almost everyone I know who has been able to make that big risky change has wound up a lot happier and more peaceful. But it means taking on a pretty dramatic change in income and structuring life to accommodate that.
Autiqeering6 karma
Finished Unmasking Autism a couple of hours ago. Really loved it. But you have used the word "disorder" to refer to autism in the early chapters of the book. At one point you write, "every case of autism is different."
I didn't understand the reason for using these pathologising phrases and was left confused. Can you clarify the reasoning behind that?
devon_price21 karma
Sure! I discuss the fact Autism is categorized as a developmental disorder when discussing its placement in the DSM or its broader context within psychiatric frameworks. I also use the term disorder when discussing things like Borderline Personality Disorder or Narcissistic Personality Disorder, even though in my work I approach those things from a mad pride, neurodiversity framework and believe the entire conception of a person's personality or development being "disordered" is wrong. As someone who really believes in mad pride and disability justice, I don't consider disability, mental illness, or disorder to be bad or verboten words, but useful tools for identifying how a person is viewed and treated in our present social context.
therealthisishannah8 karma
This feels like a POV choice between being a realist vs. idealist. In this society, many autistic traits are pathologized, whereas in an ideal society (which we can envision and try to create) all neurotypes would be seen as normal & acceptable. Using idealistic language can help us envision where we hope to go, but it comes at the risk of invalidating people's lived experiences. To use realistic language acknowledges the burden autistic people have had to carry, but can also make the vision of a truly equitable neurodiverse world feel more distant.
devon_price14 karma
Yeah, I think my goal is often to bring the two together -- radical acceptance of what is, rather than pathologizing it or holding it against an idealistic standard. Autism is a disability and might always be no matter how much social acceptance we achieve, but it's also undoubtedly true that in a world that is hostile to difference, we are far more disabled than we would be in a world that embraced us. Diagnosis and disorder are not really the approaches to disability that I think are correct, but in the present context they are a huge part of how many people come to find out they are part of our communities and so I speak about them a lot.
oldasd19705 karma
I've only recently self-diagnosed despite being an old-fart. (There's a really good chance that I've been married longer than you've been alive.)
I consider my wife my one and only friend - ever. And now that I know what I'm dealing with, I'm understanding much better why there have been some persistent problems in my marriage that defied my usual ability to root-cause and solve problems. My children are grown and living on their own. I have a great career with a senior position.
I would love to make some actual friends. As my wife and I grow old and wander off into the sunset together I want to contribute more fully to her happiness or at least quit inhibiting it.
Most of the books I'm finding are geared towards someone young who is just starting their life, whereas I can sense I'm rapidly entering the last 1/3 of my life. I don't need to know how to go to school or get a job. Do you have any personal works or works of others that you'd recommend to someone like me?
devon_price2 karma
I would strongly recommend the writing of James Finn, an Autistic writer and activist in his 60s: https://jfinn6511.medium.com/
And I do have a piece on how to make new friends as an Autistic person that I think applies pretty broadly across age groups: https://medium.com/autistic-advice/an-autistic-social-butterflys-guide-to-making-friends-40bf4f9377f
ItsAllAConstruction5 karma
How do you usually describe or define autism, without making it pathological?
devon_price33 karma
My favorite way of summing it up is inspired by The Autisticats, who said we can best understand Autistics as processing the world in a bottom-up fashion, whereas most allistics experience the world in a top-down fashion.
Allistics are generally very good at filtering out information and sensory data that does not line up with their "big picture" image of the world around them. They're good at ignoring background noise at a crowded party, and entering a new space and immediately having a big picture idea of what is expected, where you're supposed to stand and what you're supposed to say, what the norms are, etc.
Autistic people generally process the world in a more ground-up fashion, taking in every piece of data and having to effortfully put it together into a cohesive whole. An Allistic can look at a person and know instantly that they are sad, for instance, whereas an Autistic person might notice a change in breathing, downcast eyes, a tense smile, and a quavering voice and have to effortfully put that evidence together and come up with the conclusion that the other person is sad. All while being hit with a barrage of background noise and facial movements and nonverbal cues from all the other people around them too. No wonder life is so much more exhausting for us! We have to behave like detectives every time we walk into a new environment!
ruzahk4 karma
Im really curious how this perspective could relate and account for the stereotypes of some autistics being very blunt and "cut the bullshit." I find I get very impatient with information and irrelevant details that doesn't fit "the point" when I'm focused on something, but that doesn't sound very bottom-up of me.
devon_price3 karma
This is a really good insight that actually had not occurred to me!! Like you I get very frustrated by extraneous details and dithering, especially in meetings at work (which are already overwhelming because of the social performativity of them). When people flood me with irrelevant details I just want to scream!
Page_Won-3 karma
How does this differ from introversion?
Edit: Why is this being downvoted? It's a genuine question because what was written sounds like what I've read about introversion. Anyone have an explanation?
devon_price1 karma
Introversion would typically only refer to social overwhelm, not sensory or information processing. Some Autistic people are extroverts!
dilemma1235 karma
Do you have any advice for when coming out as autistic to someone doesn’t go well? I tried coming out to my partner, who I suspect is also a masked autistic, but she was very dismissive of me, doesn’t seem to believe in self-diagnosis. Feels so bad to think you are going to be supported and then are not!
devon_price9 karma
I'm very sorry to hear your partner was dismissive to you and to the idea of self-diagnosis. Are they open to learning more? Many people think that psychiatric diagnoses are objective, scientifically verified facts, and are not aware of just how messy, invalidated, and flawed the process is. They also may have a very narrow conception of what Autism is. If they are open to reading more about these things, there are untold resources online, cited in my book, in other books like Neurotribes and Uniquely Human and Uncomfortable Labels, etc, all worth passing along to them -- but it's only going to be worth your time and energy if they actually are open to reconsidering their biases. Are they?
Convivialitea7 karma
My partner had been diagnosed as a kid, and as a teenager/young adult I was really dismissive of that diagnosis because of how stereotyped everything that I’d read/seen about autism was—and I was a devout devourer of psychological knowledge!
Fortunately my partner shared how hurtful that was personally, ie “I feel invalidated when you reject this thing that I think explains my challenges.”
That helped me get out of my head (thinking I was being “encouraging”) and into a state of “okay, I want to understand more”.
Part of why I’d dismissed some of his experiences as being due to autism is “well I do that exact thing and I’m not autistic” 😅
So yeah fast forward and I’m totally also autistic.
All the biases and hang ups that Devon describes in Unmasking Autism were things I needed to work through—learning what autism actually is, finding out how messy and reductive a lot of the science has been, seeing the ways that psychiatry has consistently failed this group of people who can clearly articulate their own experiences, seeing the high crossover with ADHD (which I had previously self-diagnosed as an adult), and ultimately coming to terms with being disabled.
So sharing that book in a soft way, like, “this has a lot of advice that works for anyone, whether you’re autistic or not, and it would mean a lot to me if you read it” could be a good way to gently broach the topic—if, to Devon’s point, they’re really willing to listen and rethink their biases.
My mom is probably a very masked autistic and she is probably not willing to rethink her biases. :/ As someone said to me this week, “someone can only know you as well as they know themselves.”
devon_price12 karma
Thank you for this comment, this is all excellent advice. A lot of the people who say dismissive things to newly-out Autistics are the friends and family who themselves are disproportionately likely to themselves also be Autistic. Autism runs in families and we often tend to intuitively find and connect with one another as friends and partners.
So when one masked Autistic person is the first one in their social group to find out they're disabled, everyone around them (who is also masking) may initially have a dismissive and defensive response. "What? That's just normal! Everyone pretends to like small talk and hates being in large crowds! Everyone hates changes to their routine! We all just pretend that we don't!" It's hard being the first person to challenge the masks we all wear, but hopefully your loved ones can come around and realize it's good to explore for themselves too.
devon_price13 karma
Nope! There aren't even any assessments originally designed with adults in mind.
Tinytin2264 karma
Hi! Thanks for doing this AMA. I’m a clinical scientist looking to make the jump into autism research in my 30s due to similar experiences to what you’ve described.
Can you share any advice on how to move into the field? My interests are in sensory-based interventions in under-identified/misidentified populations.
devon_price11 karma
I would start by binging the entire journal Autism in Adulthood. It only started up a few years ago, but it is *the* premier place to consume research by us, for us. Take in their whole back catalog if you can. Other than that, I would just start doing it! Read a lot both from the peer-reviewed lit and from actually Autistic voices, and don't let the academic tendency toward imposter syndrome slow you down. We need more people doing work on Autistic adults, there are a ton of gaps in the literature that need filled. Here's a twitter thread with some gaps in the literature that stand out to me: https://twitter.com/drdevonprice/status/1354836356074233858
MartyRocket4 karma
I think I'm too late for this, but I found this and feel compelled.
Hello, Dr. Do you have any advice on how I can quit with the self loathing that I have when it comes to having autism? I'm very ashamed of it. Sometimes I wish that I wasn't, but I have a lot of self hatred about it and wish I was neurotypical, I guess. I've been advised that I've done a lot despite being autistic (I'm in a poly relationship, own a house, became a naturalized American, and have masked to the point people who don't know I'm autistic would ever guess). Yet, despite all of that, I have a lot of depression, angst, and self loathing over it.
I'm not sure I can elaborate; I just wanted to get it out. I struggle with it a lot.
devon_price3 karma
It's really heavy stuff. I struggle with intrusive bursts of self-loathing, too. In fact, the next book I'm working on is all about shame because, despite all the strides forward I've made, I can't quite shake the shame of being a closeted trans person and a masked Autistic for decades.
I'll say this though: I could not get through this stuff alone. No amount of individualized therapy and obsessive self-reflection made a dent in it. What I needed was to work on building supportive relationships with other people like myself, getting honest and vulnerable with them, and learning to love and appreciate them for their weird, traumatized, tender, complex disabled selves. Giving love to other people and receiving love and acceptance back (and working on how I engaged with others) is what helped make these feelings manageable. I also think DBT skills have helped a ton.
EaseApprehensive79324 karma
What would be your best general advice be to adult women, trans, non-binary, and BIPOC individuals starting the process of seeking out medical diagnoses? I’m a 23 yr old poc female and I’ve been diagnosed with ADHD for about 6 months. I’ve been treated and gone to therapy for anxiety and depression since my teenage years. I’ve spent some time searching for centers which offer A.S.D diagnostic assessments to adults in my state and the few options I’ve found have resulted in many unreturned calls, full waitlists, or over year long waits which has been very discouraging. I believe self diagnosis is valid and understand why it’s the only option for many given the hurdles and biases of our medical system, but it’s still important to me for a number of reasons to seek a professional diagnosis. I just wonder if with your experience you could offer any tips or advice for obtaining diagnosis appointments as an adult, especially for those that doesn’t fit the stereotypical idea of cis white male presentation. Thank you for your work and openness! Very inspiring! (:
devon_price10 karma
It sounds like you are doing everything correctly! The fact is, there are very, very few professionals who are willing to assess adults, and even fewer of those are actually competent in doing so. In my city I can name about two or three people who I'd recommend to someone who *needed* a diagnosis, and even then I could not promise that it would be a good experience or that the professional would even be available. I'm sorry. It's a really terrible state of affairs, which of course is part of why I am so virulently pro self identification. I would ask other Autistic people in your area to see if they have other leads, check in with local Autistic groups, keep calling the centers you do know of, and check Psychology Today's therapist finder. But you might already be doing everything you can.
G0bl1nG1rl4 karma
How to forgive my family for villanizing my behaviour? Getting my ASD and ADHD diagnosed at 37 is helping my family understand the behaviours they resent me for, but it's hard to forgive them.
devon_price6 karma
It does not sound like they have made amends for their actions yet, so are you sure you want to forgive them?
It's good they are learning to understand you finally, but if that does not come with a major realization that they failed you in the past, and a true attempt to make amends or at least acknowledge the damage, I don't know that forgiveness is owed.
But I understand carrying all that anger and hurt is very heavy. You can work on accepting how things were, and you can continue spelling out to them all the ways in which their actions hurt. You can ask for the validation you need from them to help you feel more seen in the present. But you dont have to ever forgive them if your heart is not there. There are many things my own relatives have done I will never forgive them for, even if I am grateful for whatever changes they eventually made.
Convivialitea3 karma
I’ve been eagerly awaiting the book release and am almost finished with it!
Especially as someone who’s always been hyper-verbal, hyper-expressive, relatively femme expressing, and extremely masked, it is a massive relief to be learning so much about who I really am.
My most important question is: where did you get the shirt in your picture? 🤩
mercurly3 karma
Hi from a fellow Appalachian! 😁
My question is: does the neurodivergence umbrella include trauma? If not, do you think it's important to try to separate the two at all, say if you think you have both and want to learn which one causes panic?
devon_price16 karma
Neurodivergence / neurodiversity includes everyone with any mental illness or disability or anyone perceived as having one, or having any traits that are pathologized. So yes, anyone with acute trauma, complex trauma, attachment trauma, complex grief, etc could qualify. Neurodiversity is a MASSIVE tent -- I think of neurotypicality as a socially constructed ideal that no one can live up to all the time, more than a type of person. Almost all of us qualify really, at least at some point in our lives.
Echoing what others have replied here about Autism and trauma being inseparable. Growing up Autistic in a world that requires you to be neurotypical is traumatic. Having to hide your real emotions, way of communicating, sensory pain, special interests, needs, etc is a really harrowing experience. Almost all of us are bullied, reprimanded, rejected, shamed, and internalize society's painful standards and baggage. ABA Therapy has been well documented to be a predictor of PTSD at this point, but even for those of us who did not go through it, we experienced really life-changing experiences of invalidation and social conditioning akin to it in many ways.
I am however a big believer in post-traumatic growth, and in narrative therapy as useful for recovering from trauma. You will never be the person you were before your trauma happened, but you can develop a unified, integrated sense of self that accepts your life experiences and how they have affected you, as well as the things you have learned and ways you have grown as a result. There is no version of me that exists underneath my Autism, it's an inextricable part of who I am. And that's wonderful. With trauma, accepting that same fact is a lot harder, because there is loss and pain and a lot to mourn -- but in my case, I have made some degree of peace with my trauma and am thankful for the ways I have used the learning that was borne out of suffering as a way to support and empathize more greatly with others.
You won't ever be able to untangle which parts of you are Autistic and which are traumatized, because you are not a collection of parts. You are a fully realized person exactly as you are, and all your experiences, struggles, pains, losses, lessons, etc all are equally essential to who you are now.
Convivialitea5 karma
From the perspective of understanding panic attacks, it’s probability a “yes, and” situation. Both trauma and autism can contribute to panic attacks. So it’s helpful to understand both.
Let’s say you often have a panic attack while on the bus. Maybe it’s sensory overload at the noise/rumble of the bus. Maybe it’s triggered trauma of being in a vehicle you don’t control, from prior PTSD or CPTSD. Or maybe it’s both—so you could try noise cancelling headphones and a comforting fidget to see if that helps with the sensory piece, and also look at trauma treatments if there’s still anxiety.
More often than not, they’ll be deeply intertwined.
devon_price12 karma
This is really practical advice. I think instead of trying to untangle "what is Autism?" and "What is PTSD?" you can ask yourself: what are my triggers? What situations do I experience panic attacks in? When I do have a panic attack, what tends to predict it? Was I hungry? Overcaffeinated? Did I have a long, crowded commute? Was I around my emotionally invalidating parents? Had I not had enough sleep? The more you chart it out, the more you will have a sense of all the variables that make your coping better or worse, and what sets you off.
frogandbanjo3 karma
Isn't the notion of "unmasking" impossibly normative and subjective? It seems like society itself - well, at least a fair one - can be defined as an agreed-upon bar that we all have to meet, even if we struggle.
As a total asshole, I may struggle more to meet that bar in a variety of situations than a naturally pleasant, affable person.
Meanwhile, discussions of social disabilities also have to grapple with the harsh reality that most relationships are ultimately transactional. Given that deception is a baked-in (arguably endlessly recursive) element of these transactions, doesn't that only reinforce the above definition of society?
devon_price25 karma
I disagree with your major premise. Most relationships are not transactional in any easily quantifiable way. Most of us need other people and enjoy being around other people, to some extent, even if relating to others can be really painful or hard as well. Without human contact, people get ill and die, and tend to have far worse health by almost every single metric.
Humans are messy, irrational, and subjective, and even things like "being pleasant" are not easily measurable. I might like a direct, analytical person like you and find you way more pleasant to be around than someone who is really emotionally expressive and smily and supposedly affable. I find people like that really draining. I like being around people more like myself, because they help me feel more normal and okay, and I find them more interesting. It is not a transaction, I'm not trying to gain anything or game it out -- I just need to be in community with others, as nearly all humans do. What's that Alice Roosevelt quote, "If you don't have anything nice to say, come sit next to me?" I love sitting next to people like that. It's there that I feel safe and loved, and stimulated. I can only find my people if they unmask themselves and are willing to be a little bit brittle and snarky or "unlikable."
frogandbanjo0 karma
I'm not sure you disagree with my premise if you have to qualify "not transactional" with "not easily quantifiable."
I think interpersonal relationships are one area where quantification is trivial compared to the strong evidence of some kind of transactionality.
I'm honestly amazed you try to reject the premise, though. Ask autistic people how rough it is when they fail to understand the implicit social transaction of something as simple as the question "how's it going?"
If you fail to conform to your culture's expectations for how that question is supposed to be answered, you could end up suffering real consequences. Those consequences are, indeed, difficult to quantify, especially when you take snapshots. Broaden your outlook to overall social health over a decade, and then it starts to seem a lot more quantifiable.
devon_price3 karma
I thought by transactional you meant something is given in exchange for something else. I don't see how that occurs in an exchange like "how's it going?" That's a non-literal or symbolic interaction but it's not transactional in any way I can see. Can you explain what you mean?
Also I do not think that "not transactional" and "not quantifiable" are the same thing, but I do think there is an ineffable quality to many social interactions and that people really do just engage in them because they feel like it, or because of a desire to attempt contact, with no gain in mind.
UzoicTondo3 karma
Where is the line between autism and under-developed social skills? By labeling all neurodivergence as autism, aren't you risking pathologizing eccentricity?
devon_price25 karma
Who said all neurodivergence is Autism? Or that all eccentricity is neurodivergence? None of these things are pathologies, and they all exist on spectrums. A lot of Autistic people have non-Autistic-identified family who are eccentric or have a boatload of Autism spectrum traits. The line between "Autistic" and "non-Autistic" is an artificial one, drawn in the middle of a long, varied continuum. It doesn't pathologize eccentricity for more people to openly identify as Autistic. By creating a world that embraces more Autistic people, everyone who is a bit odd -- including the "merely" eccentric" -- can enjoy more acceptance and comfort, and less judgement.
Sel_Tomar_02173 karma
How would a self diagnosed respond to being gaslighted? I tried striking a conversation with someone, and the style of the conversation most seemed i was being gaslit. Now I don't know how to constructively respond to this person. Who says they have a background in mental health and neurology
devon_price8 karma
Well my first question would be: who is this person to you and does their opinion matter? Most people with psychiatric or therapuetic training approach Autism from the pathology paradigm, and most of them have little to *no* training about Autism in adults. They likely know very little beyond the most narrow, outdated stereotypes and they are probably really arrogant about how little they know, and tend to view self diagnosis as a threat to their authority. Which it is, by design. So if they find your existence and identity scary, they're probably someone not worth engaging with unless you have to.
Sel_Tomar_02171 karma
The person, is no one who I know In real life. The person is someone from the sewing community in which I engage with. I thought to strike a friendship. A while ago this person send a friend request and I accepted. We didn't communicate alot. In fact we haven't communicated other than me complimenting (commenting) on the person's posts. So today I thought to strike a conversation via messenger. But almost immediately after me disclosing I am self dx'd, the person let's me know of disagreeing with self dx. Also pointing out people from the autistic community disagree with self diagnosis. I've replied by asserting that I no longer wish to continue in that style. Do you think self diagnosis is a good basis? Even if maybe it may not be the correct one.
devon_price3 karma
I believe self diagnosis *is* the correct basis. I think it's liberatory and essential for disability justice. Here is a piece I wrote on that: https://devonprice.medium.com/self-diagnosis-isnt-valid-it-s-liberatory-ce9ee9d6fca6
I would say if a relative stranger online is being rude and dismissive to you, well, they've made it clear they are not the good candidate for friendship you hoped they would be. I wouldn't waste any more energy on them if it were me, personally.
therealthisishannah3 karma
Do you have any advice for self-identified people who have trouble getting others to believe they are autistic? I've only tried disclosing to a few people I'm close to who I believe are capable of understanding, but the most frequent response I get is polite skepticism. Lot's of "if you're autistic" and "maybe it's ADHD + anxiety"
I believe I pass as allistic bc both of my parents are professional actors who coached my behavior as soon as they noticed that I lacked the social instincts common in other kids my age. Also, I've been on a mission to eradicate every blind spot I have about human nature for over a decade via studying psychology/anthropology/hyperfixating on every unfamiliar human behavior I learn about until I feel like I understand it. Every social "instinct" I have was painstakingly learned through trial and error & extensive study.
Maybe my real question is, how do you find the inner resources not to be shattered when people you're close to assume they know you better than you know yourself?
devon_price1 karma
I really would recommend the book "The Courage to Be Disliked" as well as Adult Children of Emotionally Immature Parents (even if your parents were not that). I do also discuss learning to detach from others' emotional reactions in my book and cite some other resources there. Ultimately, you will have to work on internalizing that you are not in control of how other people feel or what they think. It doesn't matter if they believe you or not, you know who you are and what you need-- and you get to decide how to engage with other people and who to keep in your life. Look to behavior. Who is willing to listen to you? Who is curious? Who can admit when they are wrong? Who puts time into learning more? If someone shows no signs of actually valuing your perspective, there is nothing you can do to force them to. All you are in control of is your own conduct.
Ameisen3 karma
As someone who has Asperger's, I find your arguments regarding it to be intellectually dishonest.
First off, the actions and beliefs of its namesake are absolutely irrelevant to its validity, yet you spare two very long paragraphs on it. It almost feels as though you're trying to project his Nazism onto those with Asperger's given what you write.
I don't find that people with Asperger's share much with people with high-functioning ASD. I also know a number of psychologists who still oppose the removal of it, as it doesn't help with treating it.
And, frankly, I find your insistence on "unmasking" to be... offensive. It is a disorder, and I want to fit in with general society. I do not like feeling as though people are accommodating me. Or does this only apply to "cis white straight Aspies"?
devon_price5 karma
You must be referring to this essay of mine: https://elemental.medium.com/the-issues-with-aspergers-e6de6c4591fd
If you think this essay is saying no one should identify as Asperger's, then you are very mistaken and should give it another read. I also have a whole long rant in my book against language and identity policing within our community.
iamnotafraid23 karma
Hey! I’m a big fan of your work as a fellow writer and former public self advocate! I’m really excited to read your book. I’ve been wondering for a while, when/how did masking become such a widespread term discussed in in the ND community? I remember writing about this idea in 2016 and struggling to define it, or give it a name, and when I wrote about it I got a lot of mixed reactions and pushback, but this was 6+ years ago.
And then, If you’ll spare me a second question.
I just got into grad school for my MFA, specifically I hope to do some social practice as well as document the burgeoning ND community, so I’ve been wondering to myself lately:
Proactively, what can the autistic community do to organize and help make it easier and more acceptable for eachother to unmask in the world?
devon_price4 karma
I think the conversation about masking has just organically developed over time from the ground up, the way a lot of terms and concepts catch on. The scientific literature started talking about "reputation management" and camoflaguing by the early 2010s, and when I was first reading up on Autism myself around 2014-2015 I definitely encountered discussions of masking though it was less on people's radar then than it is now!
Here are some posts online from 2011 through 2015 where masking is named and discussed:
https://integratedlistening.com/girls-autism-better-masking-social-deficiencies/
And this review article cites some of the early research on the topic: https://www.sciencedirect.com/science/article/abs/pii/S0272735821001239
I encountered conversations on sites like Neurowonderful and Real Social Skills about the idea of masking, and I think over time it has become a really pressing concern as more and more masked Autistics have discovered themselves late in life and needed to find a way to describe it. The community has changed a lot in the last few years!
In terms of what we can do to help others unmask, that's what a lot of the book is about but to sum it up: by building communities by us, for us, living as openly as ourselves as we can, and by fighting for public policy changes that will allow more of us to be safe enough to mask. These public policy changes include things like better legal protections for disabled people against discrimination, the end of "at will" employment, and abolition of the police. I explain why each of these is essential in more detail in the book of course.
dej0ta2 karma
My wife was diagnosed with Autism last summer and is working on her unmasking process now. What tips do you have for neurotypical partners to be the best partner they can be?
devon_price3 karma
Believe her when she says something is bothering her. Give her space to collect her thoughts when she is overloaded. Provide alternate routes of communication beyond spoken language -- text, email, etc. Keep reading and listening to other Autistic perspectives. Just keep working on finding better ways for you both to communicate how you are feeling and what you need. Good luck!
dej0ta2 karma
Thanks Devon we had a rough night I needed this today! Have a great weekend. Following up like this is touching and appreciated!
devon_price2 karma
The fact you're being really intentional about this stuff and trying to learn more puts you miles ahead of many partners, sadly. It will be hard sometimes but you're doing the right thing and coming at this from the right attitude. <3
meatballlady2 karma
I suspect that I may be an undiagnosed adult. Besides your book, what would be some good resources to explore?
devon_price8 karma
Neurowonderful by Amythest Schaber
Real Social Skills by Rabbi Ruti Reagan
Anand Prahlad's writing
the book Uncomfortable Labels by Laura Kate Dale
The Autism Translated Subreddit
Here's a longer list I made a while back: https://www.instagram.com/p/CIbI3XJhJgw/
throwaway_am11132 karma
(throwaway because...masking 😅)
Hi Devon!
I'm in the process of unmasking, and have run into a problem which I can't seem to find any other perspectives on. I'd appreciate any thoughts or related stories you have on it :)
I realise that having this problem in the first place requires massive privilege, but how might a person avoid relying on their conventional physical attractiveness as "compensation" for existing in an atypical way? This thought process looks like: "it's okay if other people think I'm strange because of my autism - I will still be accepted BECAUSE I am conventionally attractive". This leaves self-esteem as an unmasked autistic at the mercy of weight gain, ageing, or a bad hair day.
A person can resist "compensating" for their autism through other conventionally-idealised traits by allowing themselves to behave in ways which contradict those traits. For example, compensation through intelligence might be challenged by being honest about what you don't know, or taking up a hobby which you're not naturally good at. However, conventional attractiveness is relatively static, so compensating through it cannot be resisted in the same way.
This layer of my "mask" may make life much easier now, but it will fade away as I age and bite me in the ass if I don't deal with it, so...yeah.
Btw, I love your Instagram/Medium content and started reading your new book today! I think you're a rad person B-)
devon_price13 karma
You mention that attractiveness is relatively static, but you also mention the fact that it does not last forever. You could choose to contradict your attractiveness if you wanted to do that to challenge yourself -- get a really unflattering haircut, dress in clothing that doesn't fit you well, get in a fight and break your nose. But I don't think you actually want to do any of that and I wouldn't recommend it.
I think the problem here is that you are approaching privilege as some kind of sin that we need to wear a hairshirt for, when what it *actually* is is a form of power that we have been given by an unjust society, and which we can use to uplift and support other people. You're attractive. Great. That's not a problem. Don't beat yourself up for it. Just be aware that it comes with power. And use that power to help others.
When you're hanging out with a less conventionally attractive Autistic friend and they get ignored in a conversation, help shine the light on them: "Barry was just saying the funniest thing to me...," If you see someone being treated unfairly in public, step in and use your pretty privilege to control the situation. "Hey, there's no reason to yell at the Barista for asking you to put a mask on, friend. They're just trying not to get sick at their job." Raise the difficult points at work that need to be said that no one wants to say. Use your privilege to draw attention to injustices. Be a tireless advocate for fat people, people with visible disabilities, etc.
And be gracious to others, and kind to the less conventionally attractive, and validate their experiences and perceptions. The privilege you are naming is very real and I know it well myself. Sometimes I have friends who ask me for dating advice, or advice for navigating a conflict at their job, and they wonder why I can seemingly breeze through so many situations just instantly being liked by people. Fellow Autistics in particular ask me for advice with how to get dates or manage disagreements. They want to know what they're doing wrong, or failing to do correctly, when often there's nothing to it beyond attractiveness and bias.
Instead of making people feel like they are doing something wrong, I just tell them straight up that I have the kind of appearance that makes people like and trust me. It's not fair, and it's not right, but it's true, and it would be irresponsible for me to not recognize that it's happening. I know that my friends who don't fit our culture's beauty standard have a harder time, and I can't fix that for them, but I can fight the systems of oppression that are all tangled up in that (which include white supremacy, ableism, fatphobia, and more), and I can tell them that hey, they're not crazy, they really do have a harder time out there than me, and it's not their fault.
Nocturne952 karma
Hello! Ive been wanting to read your book for so long as I am autistic and been involved with trying to give awareness about neurodivergence and autism/adhd at least within my untreated deeply neurodivergent family.
I struggle to explain them that they shouldnt try to train their kids to survive the deeply ableist world we live in, because thats usually what they do and its usually done suppresing their kids special needs.
From experience I know Ive fared way better than other autistics/adhders that werent forced to learn social cues et al, but Im struggling now with learning things i needed that being Masked 24/7 didnt allow and I cant seem to make a good balanced point about where to draw the line; have you dealt with this kind of intergenerational neurodivergence discussion? I want to find a solution that will give the kids more tools to deal with their neurodivergence without making them bullseye in our bigoted town but I havent so far
devon_price6 karma
I think it may be worth sitting down with your family (at least the people you think are capable of being reasonable and hearing you out), and talking about their concerns and fears, as well as your own. I'm sure they are genuinely terrified of their kids being bullied, punished in class, having trouble getting into college or doing well at work, etc -- basically they fear that being visibly disabled will make it hard for their kid to get along on their own in life. And they might think the solution to all those fears is to train their kids to slip under the radar as much as possible, and present as the person that our hyper individualistic capitalist world expects all people to be.
Their fears are real and some of them are based on actual realities of how ableism works in our world. So you can potentially hold space for some of those fears, and share your own experiences with being rejected or being made vulnerable because people don't accept your Autistic self. Then you can share with them how having to pretend to be someone that you are not is deeply, deeply gutting and emotionally ravaging -- and perhaps share with them research showing that masking is bad for Autistic people, or point to writing from Autistic people about how corrosive and exhausting it is. (I of course have written a ton about this and quote a lot of people with that experience in my book, but there are limitless examples free to find and share online).
I think ultimately you and your relatives are facing a common enemy: our ableist world. They are misguided about what the solution to dealing with that ableism is, but they may accurately recognize how stigmatizing and difficult being openly Autistic can be. I would encourage you to help them make contact with Autistic adults who are themselves parents, and to read their work: Tiffany Hammond of Fidgets and Fries is great, so is Jen White Johnson and her work celebrating her son's #BlackAutisticJoy, and of course there are many others online writing about this stuff. Perhaps if they can see that there are Autistic parents out there doing right by their Autistic kids, they won't be so afraid of letting their children be themselves. But the tension between the need to mask (which most of us *do* experience!) and the pain of masking is real, so neither of you are completely wrong, in a sense.
nxt_life2 karma
I hope I’m not too late. I follow you on Instagram and have learned so much from you, I’m a huge fan. I haven’t started reading Unmasking Autism yet, but from many of your posts and some other online sources, I’ve began to wonder (more suspect) that I may be on the autistic spectrum, and that what was diagnosed as OCD and social anxiety in my childhood was and is actually autism. I am, however, very high functioning, and when I said something to a friend about it they very adamantly told me I was absolutely not autistic (they have a psych degree, but so do I), and honestly seemed offended that I would even consider the idea, like I was trying to jump on a bandwagon or something.
My main question is: is it disrespectful to people who are diagnosed as autistic for me to be questioning out loud whether or not I’m on the spectrum? If the answer to that is no, then how can I deal with people who think it is? I really don’t like offending people when it comes to their mental health.
devon_price5 karma
If someone tells you that it's offensive for you to be exploring an Autistic identity, they're being completely absurd. That would be like me telling someone exploring a trans identity that they're offending me. Who cares about my feelings in that situation. It's their journey. It's their identity. Lots of trans people are in the closet. Lots of Autistic people have no idea yet that they are Autistic. it is a *good* thing for our communities if more people question neurotypical norms and explore a new identity. I actually have a whole long long passage on this in the book -- it is laughable for anyone to claim that exploring a neurodivergent identity is wrong, or appropriative, or anything else. That assertion makes zero sense and should be completely ignored. no one "owns" Autism and gets to tell you whether you belong in the community or not. All that is required is feeling some commonality with us and wanting to fight for disability justice with us. Any one can and should be a part of that.
t-sais2 karma
Hi Dr. Price! I'm almost finished with your new book (and it's great, thank you for writing it), and the exercises on values-based integration were really eye-opening for me. Is there any further reading you would recommend on the subject?
devon_price5 karma
Yes! The Values-Based Integration exercise is by the amazing Autistic life coach Heather Morgan, who writes at PoweredByLove.ca! She has so many useful tools and insights there. I also love the blog Real Social Skills by Rabbi Ruti Reagan.
Imaginary-Sky55832 karma
Hi Devon,
So fwiw, I happened to try out your chinchilla's name on my cat Malcolm because I call him the names of different cool individuals all the time to switch things up, and also because he has a glorious dump truck ass not unlike that of a/your chinchilla, and he looked over and winked at me and put his butt in the air to stretch.
Anyway, here is my question: I figured out I'm autistic a few years ago and have been in the process of unmasking as a 30 year old undergraduate student. I want to go to grad school for a combo of my special interests, because I absolutely love what I study and feel consistently exhilarated while learning and doing research, but I'm ambivalent about going because it's been such a shitshow trying to navigate the social aspects of my undergrad degree, especially networking with many of my professors, classmates, and constantly having to unsuccessfully advocate for myself with the with my campus's Center for Students w/Disabilities and my profs in order to access adequate support for my sensory processing issues. Having recently finished reading your book about laziness not existing and then starting your new book, I've been unpacking a lot of things about my life and values as a proud-yet-struggling autistic person, but find it challenging to apply some of these new frameworks of thinking to the idea of my life in academia...I'm scared that if I try to exist with my worth not being predicated by my productivity, like I'm learning we all need to do to thrive, then I won't be able to keep up in college, because I feel like the only way I've been able to progress in my degree and thus be able to access the education I desire is by ironically devaluing myself, disregarding my basic needs, and balancing the cognitive dissonance of bettering and worsening myself simultaneously.
With all that being said, what I would like to ask you is: -------How might you have approached going to college, and especially grad school, if you could have done so armed with the knowledge about laziness and autism/neurodivergence? -------- It's confusing that what I'm striving for seems designed to burn me, and now that I'm learning to not regard that burn as a badge of honor anymore, I'm not sure what to do instead. Maybe it's because I've relying on the laziness lie as a script for my autistic ass to live by for so long, but by continuing to unmask maybe I could develop the artfulness and adroitness needed to navigate the difficult places without getting burned as much. I guess I should go finish your book lol.
Thank you for your work, and also for creating a space to talk about this stuff!
-Whitney (they/she)
devon_price9 karma
Honestly? I think if I were going to graduate school now, understanding how exploitative of an environment that it is, on a systematic level, and how hostile it is to difference? I would never make it through. I have way too much self respect now, and I run out of energy way more easily now than I did when I was pliable, naive early twenty-something.
I could not handle the disrespect and abuse I endured then if I were going through it now. I only made it through by keeping my head down, ignoring my needs, neglecting my social and emotional life, and internalizing all the blame they hurled at me for everything I found difficult. The experience broke me in a lot of ways. It took years to recover from the mistreatment. And now that I know that the way I was treated was wrong, and what that experience cost me, I could never withstand it again.
I hope you have a really robust support system in place, a ton of practice with self-advocacy, a firm internal compass that will let you know when things are going badly, and the ability to walk away if you need to.
devon_price3 karma
In my view, maladaptive daydreaming is just a specific form of dissociation that can feel more intentional than other kinds, though it isn't necessarily fully in a person's conscious control. And I don't know how maladaptive it really is, either -- I think the actual problem is that a person is overwhelmed and under-supported.
In my book I talk about one Autistic friend, Angel, who dissociates into "Angel World" when he is socially overwhelmed. Everyone around him goes blurry and he can't really respond to complicated information and just moves through life in a daze. He can't even recognize most people's faces when he's like that. Angel World has a specific image that he can illustrate and his toys and special interests are there (and sometimes his mom, dad, and grandpa can enter in there with him, and be perceived by him while he's in that state), but the rest of the world is blocked off. I also personally experience altered mental states that help me regulate emotional distress, sensory issues, and social overwhelm -- sometimes I blank out involuntarily, but other times I can choose to slip under it, to help me cope.
To me, all of that is dissociation, and it might also be categorized as maladaptive daydreaming depending on whom you ask. But is it really that maladaptive? If Angel is that overstimulated and feels that unsafe, what else should he do? If dissociating on the train and entering a kind of trance helps keep me from puking due to motion sickness, is there anything wrong with that? I actually think it's really cool that neurodivergent people are so good at building those protective realms for ourselves.
devon_price5 karma
There's an excerpt online that's free to read here: https://devonprice.medium.com/i-wish-they-could-understand-autism-isnt-what-you-think-8ebde19a1d62#6903
0961 karma
What's the second word on your shirt? This is a fantastic AMA and this area of research needs more exposure. So I'm glad this opportunity is available for you and so many others to better understand themselves and others. But I initially clicked this because it bothers me I can't read all of your shirt.
trulythehardseltzer1 karma
I hope I'm not too late to join in and ask a question: do you see autism and NT as a binary? I hear some people say that "everyone's a little bit autistic" but then I hear others in the community refute that claim. Seems like the more we learn about these traits and neurology, the less black & white a "diagnosis" or label becomes.
devon_price2 karma
I explore this in more detail in the book, but I think of neurotypical as a rigid cultural standard more than it actually is a type of person. Some people are closer to being able to fake meeting neurotypical standards all their lives than others are, but almost none of us live up to those incredibly rigid rules that dictate how we are supposed to act, feel, express emotion, relate to others, work, cope with difficulty, etc -- at least not all the time.
Scared-Marzipan61141 karma
Hi! I have been diagnosed with ADHD recently, and as I read through your book, I feel emotional because it’s describing many many things as they occurred/occur in my life that ADHD doesn’t quite explain. I have been subject to scrutiny by employers and I don’t know how to protect myself going forward without an autism diagnosis. Where can someone like me (WOC who doesn’t fit the stereotypical mold) go to get diagnosed?
devon_price3 karma
Unfortunately, the options are really limited. I would first contact your insurance and see if they cover Autism assessments for adults, and ask if there are any in network providers in your area. Then contact those individuals or centers and grill them a bit on their experience with women of color on the spectrum. I'd also just google around a little for your area, and reach out to a local ASAN chapter or Autistic group for adults and ask for tips. You can use Psychology Today's therapist finder tool as well to get some leads. It really is just a matter of poking around and seeing if anyone even is available, then asking questions to see if they have worked with adults like yourself. Often it's really hard to find someone who has sadly.
Setsudo1080 karma
Do you have any thoughts on overlaps of autism and sexuality & gender? Of course, there are as many autistic sexualities and genders as there are autistics, but it does seem that there are some tendencies when compared to the allistic population. I have seen evidence cited of higher rates of gender nonconformity and I have heard of anecdotal speculation regarding greater rates of involvement with kink. Do these higher rates seem to be the case from what you've seen? Any thoughts on why that might be? Any other hot takes or hypotheses about autism and sexuality?
devon_price5 karma
here are my thoughts. The question is not really "why are so many Autistic people open about being queer or trans?" -- the real question is "Why are so many allistic people not?"
honoraryidiot-6 karma
What do you think of the theory that autism is a different branch in human evolution compared with allistics? I have heard some people talk about this 'theory' but is there any research to back it up?
Edit: changed 'stage' to 'branch' because I think a lot of people reading have decided that I have some stance on this when I don't. I am asking an expert for clarification on something that I see talked about a lot by leypeople.
devon_price18 karma
No, there is no support for that theory, and it is based on a misunderstanding of how evolution works. Evolution is not an upward progression, no animal or person is "more evolved" or "more advanced" than another evolutionarily speaking --- there are just animals who fit their environment well and thrive within it, and those that don't. It appears that Autistic people and ADHDers have always existed in human societies across time.
grwy36 karma
Are there any useful stories/insights in Unmasking Autism that may be useful for people who are (perhaps not neurotypical but) not on the spectrum?
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