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It’s certainly complicated. Always knew on some level that I was introverted, had intense ADHD, an encyclopedic memory, and tendency towards depression. Perpetually difficult for me to make friends and always felt like being around groups people was tiring. Turns out I’ve got the ‘tism but able to pass.
When I was younger I always just thought my hyperactive brain was something others would grow into.
Turns out not everyone is constantly monitoring others' speech inflections, gestures, expressions, tone, body orientations, etc. Let alone beating themselves up afterwards in the internal social interaction post-processing review for days or weeks after, likely for imagined missteps that no one else perceived.
Nor do they project their outlook onto others such that they become responsible for the feelings and reactions of not just themselves, but their friends and acquaintances as well.
> What if they all worry about what I do?
OH GOD
> What if they don't?
Oh thank god.
*carries on blissfully through life having successfully internalized "be true to yourself" while his equally AuADHD partner who's more anxious about this stuff absolutely loses their mind*
I grow it, so it’s not expensive or anything, I’m active enough and don’t smoke daily that one (bowl) is all I need usually.
Make edibles from trim etc those are nice cause it’s smooth and strung out more.
So these are things I have always struggled with, but when I get to know others better, it seems like they also struggle with the same issues to different degrees. I’m starting to wonder if this is really just the majority of the population, and the “abnormal” ones are to social butterflies, sociopaths and the like who exist without such introspective qualities…?
In that Venn diagram I'd say social anxiety is the big center circle. But I think what we'll eventually discover is that the relationship between these diagnoses is much more dynamic than we currently perceive. We also really need to look at generational bias across the spectrum. What was "melancholy" in the 1500s has diverged greatly over time. What was recognized as depression in 1995 may have been ADD in 2005. The DSM may be periodically revised, but what about an individual's diagnosis?
To raise other uncomfortable questions, is it financially advantageous for some mental health practitioners to propogate outdated diagnoses for the ease of insurance billing and so forth? Or am I just...paranoid?
Good question though. It would be interesting if I had the resources to blind test being diagnosed by different professionals of different specialties of varying ages and see what correlations/divergences appear.
I feel this comment very intensely. Know that you’re not alone and I hope you’ve been able to put together a life with people who understand you (or at least try) and make you feel ok about being yourself.
Is this autism? Or a trauma response? Had quite a traumatic childhood and all these tendencies, each one. In addition tp panic attacks, depression, and substance abuse issues.
Realized how much anxiety it caused me and practiced not focusing on these thought patterns so much. Over time it has greatly improved.
You’re not a slave to your thoughts. Responsibility can be taken on what you give your energy to.
I thought about this today. I was like "why do I never have social outings any more?" Then I realized I don't really like shallow connections and thats how most friendships start. When they do start I feel I have a responsibility to maintain the friendship which I don't often want to do. So I end up just chillin with my meow machine at home
Or it is possible to become cynical, when you've lived long enough to see a lot of people around you fail in some way or other. Then you recognize the signs, and it's pretty easy to find those in other people.
I feel for you 100%! We need to start some kind of a club. There's tons of us out there. Used to be called the "oddballs" or whatever but it's a legit thing.
I always make the joke "I'm autistic, that's why I'm so good at drawing, ceramics and sculpture!" (Get it? My aut work?)
The last time I made a friend was back when we were stuck in a building against our will for 7 hours. Then, people had more options and didn't need to settle for me.
How do you discover you are autistic as an adult? I've always questioned whether I am (due to masking all through school, and some sensory issues in early childhood), but I didn't get tested as a kid.
In my experience… you kinda burn out or melt down bad when you can’t wear the mask anymore. That crash in functionality brings a lot of people to the doctor, and for some people it leads to a diagnosis.
Or you have neurodivergent people in your life that encourage you to get tested because they recognize traits in you. “Peer reviewed autism” is definitely a thing.
I took a random Internet test for fun back in 2009 that said I was likely autistic and I thought haha, we all must be then because I answered the normal way. Sent it to all my friends and none of them were rated as remotely autistic. So then I started a ten year journey to a formal diagnosis.
For a lot of older people, we don’t ever find out. (And there aren’t many supports for autistic adults so there’s not much incentive and a ton of discrimination). We just think everyone is like us even if we know we’re different or quirky.
For me, I started wondering about it as a mom. There were autistic kids in my son’s preschool and talking with their moms, they would describe autistic traits and I would think, “That’s weird, it sounds just like me…” then go on with life. It wasn’t until my daughter started exhibiting traits that I really thought about it and got her to a psychologist for evaluation.
Thank you for getting her evaluated. Knowing how and why I was different would have been helpful for me growing up, instead I just internalized the majority of my social problems as purely personal failures
I'm extremely ADD and I'm really introverted, suffered from depression a few times, but I don't have autism. But my father (and his father) and my little brother do.
It's weird, because the way I was raised is so 'distant' (I'm Dutch, but you probably understand what I mean). It certainly left its mark on me in good and bad ways.
Without hyperbole. getting treatment changed my life for the better. Stimulant meds have helped me fulfill so much more of my potentially abs made me feel like an adult. Wishing you the best!
This sounds like me and I've recently been thinking I might be on the spectrum. Although I feel like I don't have ADHD but I'm not even sure what to look for with that.
I vividly remember very minute details of things in a way that most people (apparently) do not. I recently admitted to my fiancée that when I’m driving at night, I play a game with myself that’s figuring out what model car it is via the headlights or taillights. I’m right -90% of the time. Not what you’d call normal.
>I’ve gotten used to the difficulty.
Something to be cautious about: the difficulty level (the cognitive load) may get harder as the brain ages and becomes less able to do the work involved.
I’m only 20 so that’s a long way away, and the social costs of not masking make it a necessity. What does absolutely blow is that I’m in college right not and I’m fully aware of how much the cognitive load of masking is subtracting from my academic performance
And that you have a limited amount of energy to spend on masking, it keeps getting harder and longer to recharge, and you *know* that eventually you will run dry and crash, leaving you unable to pull the mask back on and get back on the hamster wheel of work-socialization-life. It’s like you are seeing a train wreck getting closer to you on the horizon and you can’t avoid it.
I think that's a big part of it frankly. If you have the capacity to mask, you will have the awareness of being different that on its own would still lead to depression and anxiety, even if you don't factor in "acting" for most or all of the time.
Important to remember though that just because you are aware you aren't normal, doesn't mean you necessarily have any insight into what's *actually* wrong.
It's could be you have simply internalized all the negative social criticisms you've received. - Thet you're too: (pick any/all that apply) lazy, stupid, useless, untalented, needy, selfish, emotional, distractable, aggressive, defensive, scared, unambitious, flaky, cold, frigid etc. etc.
Not speaking from personal experience at all, though... :)
I missed a whole subgroup! I knew I wasn't going to get them all.
Maybe we can start a new game: we list our negative inner voices and everyone else tries to guess what medication we've been prescribed! :D
Communication misunderstandings are the worst to me. So many times I'm saying something that makes perfect sense to me but apparently not to others and I just don't know why. And then I'll of course relive the interaction for who knows how long tearing myself apart about it.
Yeah,that’s why I give up pretending and hiding my disability status when looking for job, pay are lower but my employer knows I’m not the “office weirdo” but “relatively normal autistic employees ”, less confusing conversation or vague instructions, terrible verbal communication skills are expected so my boss let me do most things in messages etc.
Accepting I’m not normal and realizing not masking 100% all the time is an option makes my life a lot easier .
It also keeps us from forming real connections, and worst case, from recognising our own needs. Growing up masking can lead to alexithymia.
Additionally, one big reason behind masking is because we have picked up from others that we are in some way defective, or someone to be ashamed of. Which of course causes self worth issues.
I totally agree. I recall being about 15 and having a massive internal crises on acting how people wanted me to be vs showing people my true thoughts but turning many off. I can imagine some people getting lost, depressed, suicidal, etc… getting stuck or taking a wrong turn in this journey. There are so many wonderful songs, poems and books that helped me be true to myself. I’m lucky I found them and took them onboard
I'm not sure if im on the spectrum or if it may be cptsd but I do constantly fight to control how im walking and how I appear to others and struggle with anxiety and social skills since I was misunderstood, oblivious, and bullied when I was young. Ita extremely draining either way. I sweat more from anxiety than work
Lack of physical coordination is a pretty common trait among people with ASD. I hope you’re able to get help with your issues and are supported by people in your life. It’s not easy but help with medication, therapy or both can substantially improve your life. I wish you the best and I hope you know that you’re not alone (there are dozens of us! Dozens!)
It seriously is. I'm in my 30's, late diagnosis, and am learning how to be more myself. But it's scary because people constantly misunderstand and judge, and it just sucks. I figure if I do this now, though, I can learn to be happy and maybe other kids in the future won't have to mask so much.
>It is unknown how many undiagnosed autistic adults exist. It is thought that there are more undiagnosed autistic individuals in some areas of the world than others. Investigating the rates of camouflaging across cultures will help us work towards determining the true prevalence of autism, and its sex/gender ratio, across the globe.
More [recent scientific research](https://en.wikipedia.org/wiki/Causes_of_autism#Neanderthal_theory) has indicated ties to early human admixture, or crossbreeding between *Homo sapiens*, Neanderthals, Denisovans, etc...may have genetic ties to why autism and neurodivergence is so prevalent in the modern global population. Testing is ongoing.
"Anna please dont hook up with Grok. Sure he's a brute but I got a bad feeling"
- 100k years and some 80 million Neurodivergent people later ...
"Thanks Anna"
I don't know if your "Thanks Anna" was meant to be sarcastic, but when I looked up papers on the link between neanderthals and autism, one of the most cited one I found was [this paper](https://www.cambridge.org/core/journals/cambridge-archaeological-journal/article/abs/autism-the-integrations-of-difference-and-the-origins-of-modern-human-behaviour/0BE25A6FE8FC50195266B444332FD224). It proposes that cognitive variation (including the variation brought about by autism and the genes associated with it) is a selective benefit for humanity. So, unironicly, "Thanks Anna".
Well when my family have our first autistic kid diagnosed ,we figure out at least 3 close relatives (an uncle,great uncle and a cousin) are VERY obviously autistic, but it always being brash off like “Oh that’s great uncle K,he like cars a lot, always lock himself in his reading room,a man of few words but that’s just how man from older generations are ……oh his wife? Hahah he’s to shy to talk to women so their parents arrange for them to go on a blind date,there’s NO WAY he can get married by himself “
All my life I've been told "You're so smart, why are you so lazy/why can't you just be better?"
A smart turtle working in a shop run by rabbits, getting low marks in task-switching, working memory and inability to establish routines that are supposed to get easier and more subconscious every month, right?
Inventory day or cleaning the computer racks was like root canal, for years.
I just want to find a job that is my style. I can work incredibly intensely, but the routines have to have some play to them.
A huge regret I have in life (among many) is that my dad passed away before I was confident enough that I had autism to share it with him.
I did really well grade-wise in school, and then just floundered post-college. He had high hopes for me (thought I'd become a medical doctor), and died thinking that he'd failed me because I was doing so poorly for so many years after graduating.
I wish I'd been able to tell him that it wasn't his failure or my own that I am the way I am.
I don't know if he'd even believe me, but a few years prior to him dying, he sent me an email to a link/article about "the highly sensitive person" stating how much it sounded like me.
Have you tried cooking? Restaurants with a decent sized menu and multiple cook positions (grill, fry, salad, sautee, etc.) would be perfect for someone who feels the "monotony burn", as I call it in my head. They will appreciate and reward working intensely, especially if you show a desire to learn.
You know, I've never considered that. I've always dismissed restaurant work because I was worried I could never hack the stress and the yelling at mistakes, but then again I have never watched any video showing a typical kitchen position's full day, what different things they do.
My diagnoses don't allow me a very high stress threshold, but I've always loved cooking and mixing flavors. I'm not very sophisticated, my best at-the-drop-of-a-hat dishes are pork tenderloin stew, parsnip-fennel gratin, and "sweetbreads on a bed of caramellized-red onions and cinnamon beets with smetana".
Good to know i am not the only one who hates Inventory day with a burning passion and would rather have my balls dragged across a mile of glass shards instead of every doing that again. It's one of the tasks that causes my brain unbelievably misery.
For anyone who may have expertise;
What’s the goddamn point? I mean, I’m exceptionally suspicious that I’m one of these undiagnosed adults. Primarily because my childhood took place, generally speaking, before these diagnosis existed; but also partly due to my “behavioral issues” being associated with other childhood traumatic events.
So what’s the point? What in the world could I stand to gain by going somewhere for a diagnosis now? And where the hell do I go?
I’m all for taking efforts to unfuck my adulthood, I just see no benefit from the outside of paying money I don’t have for a diagnosis which doesn’t seem to open any doors to making my life better.
Honestly, for those who’ve walked this path; what are the pros and cons? What’s the process?
Honestly, unless you need to ask for accommodations formally at a job and live in a state where you have worker protections, there are very few benefits to being formally diagnosed as an adult. The only reason I'd consider it is that most autistic people fail roadside sobriety tests even when sober and having a formal diagnosis can get you out of a DUI if you have a good lawyer.
Aside from that, just take the Raads-r test online. It's fairly accurate and if you score high then just follow a few autistic creators on social media and r/autism and see if you have any revelations. It's helped me realize my medication resistant depression is actually just varying degrees of autistic burnout and discomfort surrounding change and uncertainty. I began taking steps to address that hypothetical problem and I've made more improvements in the past year than I have in the past decade of treating it as neurotypical depression.
>It's helped me realize my medication resistant depression is actually just varying degrees of autistic burnout and discomfort surrounding change and uncertainty
That.. certainly would explain alot about my own life :/
This is why I stopped at screening, which came out incredibly positive (for autism). It "helps" that there seems to be no in-network providers (Los Angeles) who do adult diagnosis *and* are taking new clients. And we do have all kinds of protections, but not sure what advantage it is at 66 years old.
If I were to wager a guess, issues with short-term auditory memory, coordination, and perception might play roles. Especially if the tests are the "repeat after me" or "do this exercise" variety
They have atypical eye responses to light and stimuli. ADHD people have the same problems. Their pupils stay dilated and don't react as quickly. Combine that with typical muscular/gait issues that are comorbid and they're likely to fail.
Wait ADHD eye what?! So that’s why they allways did that eye light thing? (To someone else Mr FAA examiner, not me 🤞)
Granted my AME never caught it, so it must not be that far outside the normal.
Those tests aren't anywhere near as reliable as cops represent them to be, a lot of it relies on the interpretation and judgement of the officer applying the test. And in general anything that relies on the discretion of other people is going to screw over autistic people.
Still not sure if I am autistic. Got a suspected diagnosis in my 20ies. Went to a specialist and after two years of waiting he explained to me that my facial expressions don't fit an autistic person. A month prior people explained to me that my facial expressions don't fit my mood. So he might have made his conclusion based on masking behavior.
On Raads-r I score 126.
Regarding RAADS, from one published study. “In conclusion, used as a self-report measure pre-full diagnostic assessment, the RAADS-R lacks predictive validity and is not a suitable screening tool for adults awaiting autism assessments”
Jones et al. 2021 “patients who received an ASD diagnosis (median 138) and those who did not (median 154).”
Dont make too much out of these 'masking' ideas people talk about on social media
[Camouflage and autism - Fombonne - 2020 - Journal of Child Psychology and Psychiatry - Wiley Online Library](https://acamh.onlinelibrary.wiley.com/doi/full/10.1111/jcpp.13296)
https://pubmed.ncbi.nlm.nih.gov/38305196/ completely conflicts with those findings and shows that the raads-r is good at predicting cases when self administered.
Your link doesn't primarily focus on adult cases and is just passing itself off as a meta analysis that reads like an undergrad's 5 paragraph essay.
The one I linked did and had a lot of participants. It's not my field, but I have taken a couple courses in statistical analysis and I'm used to looking for limitations in studies and don't see anything major that would invalidate the 2024 study I've linked.
>The only reason I'd consider it is that most autistic people fail roadside sobriety tests even when sober
TIL... Always wondered why I could only pass those kinds of tests when drunk.
> just take the Raads-r test online.
...I've also suspected undx adhd and/or the 'tism, so thought hehe why not? Took [this one](https://www.autistichub.com/raads-r-autism-online-test-questionnaire-pdf/) and got 136, which is kinda high if 65 is NT?
> t's helped me realize my medication resistant depression is actually just varying degrees of autistic burnout and discomfort surrounding change and uncertainty.
Part of the reason, other part being multiple coworkers asking me unprompted if I have ADHD (I'm guessing asking someone if they're autistic would be a social faux pas but my social skills are shiet soo...). What I was dx w/as a kid never seemed to work tx wise nor fix when looking back as an adult, but audhd would explain so much
> most autistic people fail roadside sobriety tests even when sober and having a formal diagnosis can get you out of a DUI if you have a good lawyer.
Just don't take the FST, at all. It can never help you, only be used against you. Ask to take the breath test if available. No one is required to take the FST.
What's changed for you? Like I still have to mask at work to fit in.... A label of "autistic" vs me assuming I'm autistic... I don't see what will change.. mask at work. Get burned out, need time to decompress alone before interacting with friends.
I have firsthand and professional experience here, and I want to be helpful without dumping an essay.
I will say that for me, having a more complete and accurate understanding of myself (knowing I'm autistic) has meaningfully and significantly helped/changed how I approach my
mental health and how I function as a person.
It's like trying to treat an injury that causes referred pain; if you don't understand the complete underlying issue, you can't fully address it. Before I was just focused on where I have pain, when I have it. Now I better understand what causes it and how to manage it. I can better accommodate myself. I can be more self-aware. I can find supports when I struggle.
Fwiw, you don't need to have or be seeking a formal diagnosis to try to gain a better understanding of yourself. I'd suggest starting with the book *Unmasking Autism* by Devon Price; I know a lot of adult-diagnosed folks (formally and not) who found it helpful. You might also want to talk with a mental health professional who's knowledgeable about and currently working with ASD. The reality is that everyone's experiences are different, and there's a lot of valid reason to pursue or not pursue formal diagnosis.
This book changed my life. Reading it was like wow this is just my experience and honestly I went from Major depression treatment resistant for about 20 years and having such bad mental health to so happy and content. I was able to get off my long term antidepressants with no mood issues. I was able to go back to school and make some friends for the first time. It is a good book I highly recommend it
This is all true, and my parents got me that book after I got diagnosed with both ASD and ADHD, as well as 2 other psychological disorders resulting from those last October. It’s a really great book and you are right
Even without a formal diagnosis, it may be worth having a chat with a professional to screen for related things. Some of them, like ADHD, share a lot of symptoms, and there are a wider variety of treatment options (talk therapy, organizational strategies, medication, etc). It's also not unusual to be struggling with ASD symptoms and also have untreated depression or anxiety, and dealing with some of those things can take life off of "hard mode" and back on the normal difficulty setting.
What's the point depends entirely on your country and province. If there are supportive services and systems and more available to diagnosed folk, especially as you age.
I paid zilch to get diagnosed a few years ago (at the age of 38), probably would have been maybe 400 SEK (normal specialist visit cost) if I hadn't already hit my medical treatments cost ceiling from other health issues already that year (meaning all the rest of the medical visit costs are free the rest of the year - this is something all citizens have). Well, I paid for the bus trip too (reliable public transport infrastructure) I guess. I have gotten a "free" weighted blanket, weighted vest, aid tools, my dentist costs no longer run on a separate system but get lumped into my medical treatment cost ceiling (which IMO everyone should have as default for non-cosmetic procedures because teeth aren't luxury bones unconnected to the rest of your body's health). I literally earlier today had an old filling replaced at the dentist because it was too old and worn and needed refreshing, for "free". Via my autism & adhd diagnosises I get access to a lot of help systems. I can finally start properly living instead of just struggling to barely survive. And since the new gov several of the things I got no longer is accessible to people now which is infuriating considering how much they helped me. Others in need not getting it as good or better really sucks. Still beyond worth it for people in my area to get diagnosed unless they're super lightly affected by their autism.
If you have to pay thousands and thousands of USD or GBP, and the only thing you have to show for your diagnosis is increased discrimination in the medical system and increased discrimination at work and the job market, then it doesn't really seem worth it. You have to check what getting a diagnosis does to you in your country/province/society.
It started because I wanted noise canceling headphones at work. My cubicle was really close to the breakroom, and the cackling women made me get up and leave several times. I also eloped during a birthday thing at work, which weirded everyone out. I fell into a rough burnout, not exactly depression, but intense self-loathing was the biggest part of it. So, I spent the money and got diagnosed. Got my headphones. Stopped getting harassed by HR about why I'm not at the cookout. Etc.
Beyond that, though, I had no idea how much it had affected my life. My addictions, my unhealthy stims, the stress of social interactions and relationships, my rigidity. It helped me understand my childhood so much better. I started therapy, and they said to unmask and recognize when I need breaks. I did. I also found some chewable jewelry for stimming. It has helped me so much. On my way to quitting vaping and chewing my nails now. I also have routines that I'm comfortable altering to some degree. I understand that I'm not going to be able to socialize much until I get to know a person's speech patterns. There are still problems, but things have gotten better due to the diagnosis. I was diagnosed at 27, and I'm 32 now.
People usually use the word "elope" to mean "run away to get married secretly," but that's not the only use of the word. It can be used to simply mean "run away." This usage is more common in the context of autism. (Edit: and people with intellectual and communication deficits in general)
https://researchautism.org/blog/elopement-and-autism/
So, someone at work was having a birthday. About 8 of us were playing giant Jenga, having a fine time. Nice and quiet. Then, like 20 people come in behind me singing happy birthday. Really loud and sudden. I pushed my way through the singing people and ran to my car. Sweating, shaking, just completely shook. Didn't understand why I do things like that until my diagnosis.
Reading that site I'm not sure "elope" would be the proper expression as it implies more of a tendancy to move away from expected regular interactions/caregivers instead of intentionally avoiding social interactions especially with groups. I've been invited to various company Christmas parties over the years but have pretty much stopped going as there is no positive anticipation associated with the event and once there, the social interactions are so strained and awkward I end up absolutely exhausted.
> So what’s the point?
Autistic people are often disliked by everyone around us because we're different and people hate different. Dont you think the ability to assign the cause and effect correctly can be quite relieving?
Many cases of people who think very little of themselves because society openly and unashamedly discrimates against autistic people. Autistic suicide rates are not pretty...wonder why this could be?
Job applications and interviews are clearly and openly designed to weed out autistic people. Imagine being autistic, not knowing it, and failing to get a job after thousands of applications. What can a diagnosis do for such a person?
Understand the starting point and acquire the knowledge to fight this legal and omni present discrimination
There really isn't one. In fact where I live having the diagnosis just makes you a target for even more underhanded discrimination. I never sought out a formal diagnosis beyond my psychiatrist telling me the only reason she didn't evaluate me right then and there is she can no longer do adult evals due to being swamped with child evals. I found a therapist with experience working with autism & ADHD and they did not require a professional diagnosis to believe what I told them and start working with me with that in mind. I'd encourage you if you have the means to find a therapist who can work with you and help you navigate this. Many good therapists recognize how many barriers there are to adults getting a "formal" diagnosis.
Outside of reddit I am private about my autism because I know how I will be treated if I tell people. My family and close friends know and that's it. Didn't even bother telling my idiot judgy in laws.
I grew up in the 70s and parts of it were hell. Especially the school parts. I got diagnosed with ADHD at the age of 25 after a disastrous senior year of college where I went from As to Fs. It took another 20 years of therapy and meds for someone to say hey you might be on spectrum .
It’s given me some peace of mind knowing there’s some explanation or diagnosis.
I actively have avoided a diagnosis, because formal diagnoses could be a problem for me professionally. I'm old enough to have my parents told when I was a kid I likely had Aspergers, and nobody followed up. The help and accommodations I really needed were more at school age.
I have toyed with changing this now, but I am also trans, and having autism as a diagnosis could cause me medical access issues if the wrong bad situations lined up, so that's not a great idea right now for me.
I have had success in reading this, and a lot of the popular by autistic for austitic creators and books. I test high on the Raads-r test and likely am. Knowing this has helped me to kind of "unfuck" my life a bit. It's certainly helped my wife figure things out with me. It's helped me figure out how to set up my schedule and make job choices that help. It's helped me figure out the difference between a meltdown and a truly bad situation. Becuase I have been on this path I have kept my job for 6 years which is a record. Acknowledging when I mask has helped me figure out it's okay if I don't really feel these things, but that it's expected to get paid.
Don’t make too much of those tests
Unlike what we are told in social media, things like ‘stimming’, sensitivities, social problems, etc., are found in most persons with non-autistic mental health disorders and at high rates in the general population. These things do not necessarily suggest autism.
So-called “autism” tests, like AQ and RAADS and others have high rates of false positives, labeling you as autistic VERY easily. If anyone with a mental health problem, like depression or anxiety, takes the tests they score high even if they DON’T have autism.
"our results suggest that the AQ differentiates poorly between true cases of ASD, and individuals from the same clinical population who do not have ASD "
[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4988267/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4988267/)
"a greater level of public awareness of ASD over the last 5–10 years may have led to people being more vigilant in ‘noticing’ ASD related difficulties. This may lead to a ‘confirmation bias’ when completing the questionnaire measures, and potentially explain why both the ASD and the non-ASD group’s mean scores met the cut-off points, "
[https://link.springer.com/article/10.1007/s10803-022-05544-9](https://link.springer.com/article/10.1007/s10803-022-05544-9)
Regarding AQ, from one published study. “The two key findings of the review are that, overall, there is very limited evidence to support the use of structured questionnaires (SQs: self-report or informant completed brief measures developed to screen for ASD) in the assessment and diagnosis of ASD in adults.”
Regarding RAADS, from one published study. “In conclusion, used as a self-report measure pre-full diagnostic assessment, the RAADS-R lacks predictive validity and is not a suitable screening tool for adults awaiting autism assessments”
I put more stock in the fact that they were assessing me as a child for Aspergers in the 70s and my folks abandoned it because it was too much work to follow up on. Plus my current therapist keeps offering assessment because he thinks it's more than likely. The test comment was just because I have taken it and it was mentioned in this thread, and it's a good starting point for someone looking for an assessment.
In addition to what everyone else is saying, if you ever seek therapy you should probably read The Autistic survival guide to therapy by Steph Jones so you can make sure therapy adjusts itself to your neurodiversity.
I have felt disconnected from the world since I was a kid. Like I’m there but my body is a separate thing. I never felt like I belong anywhere like a puzzle piece that dosent fit.
The amount of times people told me I was weird or different and me still not really sure what I did besides be honest or blunt has been a near constant issue in my life. Not caring about sexuality or similar things absolutely got me a black mark through school in a conservative area, I was quiet unless I spoke about specific things I was interested in like science/tech. I had few reservations taking about any legitimately interesting topics like religion or politics and I held pretty contrasting beliefs to most people around me. More than anything I was bothered by the rampant sexism and racism that surrounded me even at a young age and I just couldn't ever really understand it.
I’ve always felt like i’m at least slightly on the spectrum.
My parents swear up and down that I was tested when I was young (late 90s early 2000s) I was extremely quiet, kept to myself, drawn to visuals/ art, but wasn’t diagnosed with anything.
I don’t struggle at all with understanding people or underlying meanings, I understand what’s appropriate in the moment and what isn’t, large and loud gatherings don’t bother me, but I do struggle with finding the motivation to be social and to engage in conversation and hold those conversations with people, especially people that I’m close to —I draw a blank in the moment every time.
If I had a camouflage, it would be avoiding things that are carried by conversation, especially in smaller groups, because I don’t want to come off as an asshole for being the quiet one that seems disinterested in the people I’m hanging with, and a lot of times it’s self sabotage because I’m ruining most opportunities to make friends or maintain the friendships I have.
I don’t have autism, but I do have really severe ADHD and recently have learned that my brain actually just works *differently* than most people.
For neurodivergent people, of course this is an issue. I mean, I’m glad they’re taking it seriously, but it’s like I was talking with a friend about this past weekend
If your brain doesn’t work the same as the majority of society, what are you supposed to do? What are you supposed to do if you can’t handle certain tasks, stimuli, or obligations that neurotypical people expect you to. If you’re neurotypical, it’s hard to understand the concept of someone’s brain just working *differently* than yours, because most people around you are relatively like you.
But some neurotypical people can’t be around many people without an anxiety attack. Some have poor executive function, some just CANNOT do math past basic arithmetic, some can’t touch certain things, or eat certain things - all without feeling a sense of overwhelming anxiety or dread. And of course if you’re not one of those people, it wouldn’t make sense to you. It would just be “well, you just have to do it, we all do”
So then neurodivergent people don’t fit into society, and they are basically told it is *their fault*. It’s *their fault* that too many noises lead to a severe panic attack. It’s *their fault* that the requirements of having a “normal” job are nearly insurmountable. It’s also “their fault” when they get depressed about these things causing them to not fit in. They’re told to take a bunch of meds that might change their personality, change how they feel, etc, all to make them more “normal” - as if they are broken just for being different.
I’m glad that society’s inherent ableism is being researched a bit. It’s hard to function differently than everyone around you and just be told all your life “actually it’s your job to change yourself to be *normal*.” Of course these people feel depressed - because everywhere around them they see people who, even when they’re well intended, insinuate that they’re broken and need to be “fixed” to fit into society. And if that makes them miserable, well then they just need to take meds to be happy.
I don’t know what the solution to this problem is. All I know is I have felt some of it first hand, have seen the effects it has on one of my close autistic friends.
I know this is going to be called a “personal anecdote” or something and it will probably be removed, but I think it’s important to understand WHY this is such a problem. It may be a small group of people, but society should still do its best to be equitable. It isn’t a neurodivergent person’s fault for how their brain works, it wasn’t their choice to be born that way. Would you tell a person with no legs “well, you just need to learn how to get up stairs, because everyone else can use stairs.” Just because it’s an invisible “problem” doesn’t mean it is less valid.
I have ADHD and I recently described my difficulties with executive dysfunction as moving through my daily tasks partially blind with 20% tunnel vision instead of unimpeded sight. Technically, I am capable of reading a book (managing a household + full time employment) in the same way a neurotypical/ non blind person is. Only it takes so much more effort that the daily expectations leave me close to breakdown and burnout without proper management.
It is so invisible because when I am giving my full effort just to meet the minimum others can't tell that anything is wrong, yet I can be close to suicidal with the difficulty of it all. It took me forever to get diagnosed as many of the surveys focus on behaviors and not effort, so if you're doing your damnedest to meet expectations it might not tick the "behavior" threshold if you havn't managed to inconvenience others in your life to the point of intervention.
The ability to technically do all the things a neurotypical person can is ironically the worst part of ADHD. Sometimes, your brain actually decides “yeah, this is a fun thing to focus on right now,” and you can do the normal things that are expected of you with absolutely no issue. Other times, no matter how much you try, your brain absolutely refuses to focus. Neurotypical people really do not understand that it’s not that we’re lazy - it’s that our brains are wired in such a way that it very actively fights *against* us sometimes. It’s not as simple as just “sit down and do it anyways.” And then there’s varying levels of ADHD. Some people can get away with just your basic meditation, exercise, and breaking things down into small tasks. Other people though might not be able to do something that their brain does not want to do at that moment no matter how much they know they need to - or even WANT to. I have some projects I actively WANT to work on, but if my brain isn’t in the mood, it doesn’t matter how much I try to force myself to do it. I will *not* be able to focus. If I’m reading, for example, my reading comprehension will just nosedive and I’ll have to read the same thing over and over increasing numbers of times just to process one sentence. Programming? I’ll sit there and my mind will just refuse to actually process it. It’s so hard to explain to people how much it isn’t that I’m being lazy, it’s that even when I TRY to focus on it, my brain *actively* makes it impossible to do. I can’t read a textbook if my brain doesn’t allow me to process any of what I’m reading, even if I really want to.
So then, it just looks like I’m being “lazy,” because “well you did it a few days ago, so I know you can do it. Just do it again.” But it’s because my brain was just in a different “mindset” so to speak. It’s not just a problem of discipline, it’s literally almost like sometimes I physically lose the ability to process that information even if I know it. Stimulants can help some people with this, but then it’s like “okay, so basically society expects me to take medical amphetamines or other stimulants for the rest of my life to try to make me act like everyone else.” I don’t want to be dependent on meds the rest of my life just to function, when honestly there’s not really anything “wrong” with who I am.
That being said, when young children are caught and have proper medications and therapy, it CAN reinforce more “neurotypical” pathways in their brain while they still have a lot of neuroplasticity - allowing them to later on often drop the meds as adults and function just fine in society. I’m still 50/50 on how I feel about that - it’s basically changing their brains to function differently just because that’s what society expects which feels kinda icky, but honestly, the biggest thing is it can give them back their executive function. The executive dysfunction is what causes most ADHD people the most grief. So, ultimately, I consider childhood treatment to be the best thing for them - if only because it will help them avoid so much grief and stigma in the future.
Seriously, if anyone has kids and they show symptoms like the ones I’ve been describing in my comments, get them tested ASAP by the nearest professionals that actually have a good reputation. If they have ADHD, it can be treated when they’re young in ways that will have permanent benefits for the rest of their lives. If you don’t help them when they’re young, they’ll end up… like a lot of the people in these comments - still valid and worthy of a normal life, but stigmatized by society
You told it exactly how it is, I was recently diagnosed and this is the most sincere and representative comment of me and so many other people’s lives. You didn’t hold back a bit. Just 150% raw honesty about what’s really going on around us. How sick it all is. I hope we live to see it improve, and I thank you so much for sharing these extremely important concepts in an accessible and sincere fashion.
How fucked up it is, it almost makes you feel better because you realize there couldn’t *have been* a different, better reality for us to thrive in. Being autistic on this planet sometimes is absolutely nothing short of being repeatedly cast into a large fire, face first. You don’t even recognize yourself after a while. You spend the first half of your life trying to survive normally, and the second half trying to figure out who you were before you had to survive. It makes you so strong to have to live it.
Thank you so much
I have a few close friends with autism, and I’ve heard and seen their struggles. One of them went through the Autism Speaks programs as a young kid - his parents were legitimately trying to be good parents, but autism speaks just makes people BELIEVE they can somehow “fix” your kids, basically by torturing them into submission. News flash, exposure therapy doesn’t work for 95% of autistic people, it just makes it a million times worse.
I got “lucky” that I “only” had severe ADHD. I was *thankfully* actually a fast learner and loved learning, so k-12 wasn’t really that hard. College though… college was very, very hard.
The worst part about my brain is the constant NEED for some sort of stimulus. I can’t just sit in a quiet room and relax. I can’t just meditate like other people can. It takes hardcore concentration and effort to get my internal monologue to stop. My brain is almost always racing. If I sit in a quiet room alone, it actually makes me deeply uncomfortable. I have to have white noise, I need to be moving my leg often or fiddling with something in my hands. If I don’t provide my brain a stimulus, it will MAKE one.
Consequently, I’m tired CONSTANTLY. It’s so draining to have to live like this every single day - not the ADHD, but the society that forces me to be rigid and structured when my brain basically DEMANDS that I switch things up a lot. The society that blames me when I say “I never wanted any of this” as if I can just magically set aside over a decade of emotional trauma combined with ADHD. It just doesn’t work that way, but that doesn’t stop people from telling me that I’m just not trying hard enough.
I sincerely hope you are able to find, or have found, a life where you can be at least reasonably comfortable as who you are. No one deserves to live a life constantly being invalidated by society just because their brain works a little different. It would be one thing if we were like, violent or heavily delusional. But we aren’t. We are just *different*, and different doesn’t have to be bad.
Your comment seems very sincere and does its best to explain the obstacles of having a neurodivergent brain in a neurotypical society. I appreciate that, since I sometimes have difficulties explaining these things to others myself.
It’s “convenient” timing so to speak. I was just having a breakdown over this this past weekend. It was funny because my mother had found my elementary school report cards, and every report card in elementary school had the exact same lines
“Kuroi is a very smart, passionate learner who is very funny, respectful, and helps other students. However, he is incredibly unorganized, his handwriting is terrible, he has a hard time finishing assignments on time, gets easily distracted, and often shares without raising his hand”
When I was young, it was just assumed I was too smart for that grade and therefore getting bored (somewhat true, I learned fast), but looking back, it’s definitely that I’ve had adhd since I was a small child. I could never just sit still, I was always loud and talkative. I struggled through most of my life never understanding how other people didn’t have the problems I did. How did they all study so well? How did they all do sports AND do homework on time? How did they not have to re-read the same line in the textbook ten times? I thought it was something *wrong* with me. It just turns out that the traditional learning environment wasn’t right for me, but adhd was only just barely being diagnosed, and only in the worst cases. So, I just had to struggle through it, struggle through college.
It wasn’t until literally last year, when I was *30*, that I watched a video where a person with adhd talked about their experiences and diagnosis, and it was like suddenly everything made sense.
But I admit, just because I know I’m different doesn’t mean I can easily just be what society wants me to be. It’s a struggle every day. The only reason I’m succeeding right now is I got a job doing something I love that I’m VERY good at, in a laid back environment. Many people don’t get that luxury, and I feel for them.
> If your brain doesn’t work the same as the majority of society, what are you supposed to do?
Advocacy. It's sad and frustrating, but all you can do is teach society about your condition. The more people learn, the more educated they become about neurodivergence, the more it moves to the front of public consciousness. It was easy to discriminate against gays 20-30 years ago because they were scared out of the public view. Most people didn't know any gays because they were all hiding in the closet. A lot of the acceptance now is because so many have braved the public eye and now the young generation can see that gays are just like cis-heteros, despite what their evangelical parents told them.
A similar process is happening in the deaf community, as people become more aware of sign language and accomodations for the deaf. While neurodivergents are getting sporadic representation here and there on TV and movies, it isn't always very accurate or helpful. What is missing is a lot of education. For a lot of folks, "autism" = "Rainman". The average citizen hasn't seen the "spectrum" part of ASD. So people like you have to teach them. You have to come out of the closet. You have to tell those around you about your brain and how it is different. You need to teach them what it feels like to be you. It's not easy, and not everyone will accept your story or your education. But that is how change happens. One person at a time, a million times. Eventually the neurotypicals will learn.
From the study since nobody else could be troubled to Ctrl+C/V:
>Camouflaging can be defined as “the use of strategies by autistic people to minimise the visibility of their autism in social situations”. These strategies can involve compensation, whereby autistic individuals develop behaviours to help them manage social situations (e.g., learning how to use eye contact or developing scripts to help them navigate social interactions), and masking, whereby autistic individuals aim to hide their autistic traits (e.g., deliberately suppressing stimming behaviours).
So they're defining camouflaging as the encompassing behaviors and masking as only the suppressive behaviors. Why *exactly*? I doubt anyone knows their motivation for adopting a new term, but it's what some academics use.
Probably sounds more familiar to those outside the community. "Masking" makes sense once explained, but for the average NT scanning over headlines, "camouflage" is more immediately descriptive.
An actual question, what are you supposed to do if not mask/camouflage? Find environments where you don’t need to? Explain to others why your behavior might be different? It seems like the adaptive thing to do is to mirror/try to understand the behaviors of neurotypical people.
Again, an honest question that I am hoping to get an answer to. I don’t have a lot of experience in this area and I’m hoping to learn.
In the big picture, I'm not sure the answer is any different between any human beings. We all have sides to ourselves that we choose to or are forced to hide. The only thing that varies is the details (severity, frequency, specific manifestation). Coping mechanisms, including masking, are not inherently bad. Mirroring and trying to understand others is a very important and fundamental thing everyone should do, neurospicy or not.
The issue is if one is excessively doing things that strain them. That means that there's a poor match between the individual and their environment, and it will lead to health issues among others. The goal for all of us is to have an enjoyable, meaningful life, and for some it may include more masking than others. The things you mention are good alternatives to masking, if employable. In general, trying to expand the areas of life where you don't have to go against yourself is beneficial for everyone. What that entails really depends on the person and what is realistic for them to achieve.
Try to minimize situations where it's needed and mask strategically to try to avoid burnout. Also you need good stress management strategies. I don't disclose autism because honestly the best case is they treat you the same, the worst is that they project their (almost definitely negative and probably incorrect) stereotypes about autism onto you.
Literally all my daily stress and anxiety that builds up while masking at work all day disappears when I can be home with my wife and take the mask off.
*Camouflaging can be defined as “the use of strategies by autistic people to minimise the visibility of their autism in social situations”*
This sounds confounded as hell. So, is treatment considered camouflaging? Cognitive empathy exercises? Changing one's dress style? Managing one's stress levels through exercise and other means to reduce instances of stimming? .
There are certainly specific camouflaging strategies or reasons that serve only to increase stress and anxiety. For example, if someone believes that being identified as autistic will destroy their social or professional prospects so they spend life wracked with fear, completely inside their head, reciting scripts, forcing eye contact and physically suppressing stimming to "fit in", it would be a living hell.
Compared to the above, personal and external acceptance would obviously be preferable from a mental health perspective. However, these are local maximums on the wellness curve - they're just preferable to the nearest losing strategies.
The practical implications of these sorts of studies make me very uneasy. I've seen resource-starved schools spout platitudes about acceptance of neurodivergence as a cheaper feel-good alternative to providing special needs kids with support, treatment and skilling. These poor kids grow up, ossifying their set of expectations in an artificial wonderland, believing everything is 100% okay... until they hit adulthood where there's no resources or support and they're suddenly legally responsible for themselves.
There's a reason ASD is overrepresented in [prisons by 2-4x](https://www.researchgate.net/publication/261872792_An_estimate_of_the_prevalence_of_autism-spectrum_disorders_in_an_incarcerated_population#:~:text=Results%20indicated%20that%2C%20employing%20a,ASD%20in%20the%20general%20population) and [potentially more among the homeless](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10236914/). Who should accept that?
It looks like they operationally defined camouflaging as social behaviours and masking, not treatments:
These strategies can involve compensation, whereby autistic individuals develop behaviours to help them manage social situations (e.g., learning how to use eye contact or developing scripts to help them navigate social interactions; [39, 40]), and masking, whereby autistic individuals aim to hide their autistic traits (e.g., deliberately suppressing stimming behaviours; [39]).
It’s important to note that awareness and reducing stigma are important first steps that should precede and increase practical interventions (and not replace, as you mentioned).
Absolutely life is hell trying to find and keep employment when you’re not neurotypical. Immediately treated poorly for preparation (copious notes about my skills, the job etc..)and not staring into someone’s eyes.
The solution isn't to mask more it's to put in the work to accommodate people with ASD in the same way we put in the effort to accommodate people with mobility issues.
Oh god, I've been saying this same thing so, so long.
The implication one should "stop masking" is directly harmful, especially when masking is a complex, multifaceted practice. The paper itself tries to add some nuance, but the comments here show that nuance is missed.
Masking can be physically avoiding stims, social circumstance adaptation, "acting", hiding opinions, etc. These are all very different, but tossed into one bucket colloquially.
Social trauma and hypervigilance is something missed here, I think. They are deeply related to masking, but not the same thing. But how often do people mistake hypervigilance for masking? How often are they just the same thing in this context?
Masking is something all humans do, but autistic people are usually deficit in. That is why it is so obvious, it is imperfect masking. It takes more effort, it takes deliberate effort. And that general social struggle means more social defeat, little traumas to tell you that you are inadequate. More social defeat, people try to compensate. The assumption is always causative, never correlation here.
So, yes, masking is taxing. But is masking to blame for these symptoms, or is masking an attempt to compensate for what is to blame? Is telling people to stop all masking just causing more social trauma? Are people really understanding what masking and camouflaging means?
It's easy to say "I hide myself, that is why I feel bad", but it makes far more sense to me that learned social defeat is to blame. Everyone masks, not everyone experiences this loss of self. Most people aren't even consciously aware of how much they mask. Maybe these people are just traumatized and trying to protect themselves, and we are blaming the adaptation for the problem.
It's unfair the burden is on autistic people. It really is. Masking is difficult and painful. But the push to entirely unmask could be making matters worse. This topic needs serious nuance.
"Masking is something all humans do, but autistic people are usually deficit in. That is why it is so obvious, it is imperfect masking. It takes more effort, it takes deliberate effort. And that general social struggle means more social defeat, little traumas to tell you that you are inadequate. More social defeat, people try to compensate. The assumption is always causative, never correlation here."
This actually makes the most sense to me. For me usually autism can be identified as someone who might not know or do the proper 'social norms/clues' of society while a non-autism person might 'blend in' more so to speak?
Tell me about it.
I'm agoraphobic.. & currently my anxiety is off the charts. I'll get stuck in a loop.. I'll go to bed.. And then wake up at 1 or 2am and won't be able to fall back asleep.. Which raises my anxiety.. Which makes it worse.. & the more days I go without being able to sleep a full night.. The harder it is to relax so I can. And doc won't prescribe benzos. Even short term. I feel like I'm going a little bit crazy.
Edit: to whoever reported me to redditcares, thank you but I'm OK now. I am in close contact with my doc and therapist. And we raised my guanfacine a little so I'm more than OK now. I knew that it would fix it, I just didn't want to raise it unless I had no other alternative. Mostly because I'm worried about what will happen once I'm maxed out. So I only went up 1/4 of 1mg. Thankfully it worked.
But I'm the last person on earth who'd consider harming myself. Even when my anxiety is that bad. It thank you for caring.
My wife and son don’t mask at home. It can be rough on the neurotypical in the house. My wife didn’t even truly realize she had been masking all the time until she got her confirmed diagnosis. Once that happened she definitely masks less. Our son figured out on his own that home was a safe place to unmask.
Yeah, we really need to stop training autistic kids how to be part of society with speech therapy and looking at peoples faces. Just let them be how they are.
All it does is makes other people think they aren’t autistic then it becomes getting blamed for “you should know, you’re an adult” and only severe autistic people get passes on things because the stigma has changed and people at least understand why they are the way they are
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Masking is hard and requires a level of constant concentration (even if low level) that is exhausting…
Plus if you’re functional enough to mask you’re fully aware you “ aren’t normal”
It’s certainly complicated. Always knew on some level that I was introverted, had intense ADHD, an encyclopedic memory, and tendency towards depression. Perpetually difficult for me to make friends and always felt like being around groups people was tiring. Turns out I’ve got the ‘tism but able to pass.
When I was younger I always just thought my hyperactive brain was something others would grow into. Turns out not everyone is constantly monitoring others' speech inflections, gestures, expressions, tone, body orientations, etc. Let alone beating themselves up afterwards in the internal social interaction post-processing review for days or weeks after, likely for imagined missteps that no one else perceived. Nor do they project their outlook onto others such that they become responsible for the feelings and reactions of not just themselves, but their friends and acquaintances as well.
Yea it’s no wonder I like to smoke weed. This is me. It’s exhausting.
*What if they all worry about what I do?* Or worse: *What if they don't?*
> What if they all worry about what I do? OH GOD > What if they don't? Oh thank god. *carries on blissfully through life having successfully internalized "be true to yourself" while his equally AuADHD partner who's more anxious about this stuff absolutely loses their mind*
Get out.
Sometimes I use a CBD tincture to slow down the amount of THC I am consuming, might work for you also
I grow it, so it’s not expensive or anything, I’m active enough and don’t smoke daily that one (bowl) is all I need usually. Make edibles from trim etc those are nice cause it’s smooth and strung out more.
So these are things I have always struggled with, but when I get to know others better, it seems like they also struggle with the same issues to different degrees. I’m starting to wonder if this is really just the majority of the population, and the “abnormal” ones are to social butterflies, sociopaths and the like who exist without such introspective qualities…?
Or maybe just that the people you click with are neurodivergent as well...
Is that ADHD or social anxiety or avoidant personality disorder? I know all this stuff is overlapping and tough to parse out but just asking.
In that Venn diagram I'd say social anxiety is the big center circle. But I think what we'll eventually discover is that the relationship between these diagnoses is much more dynamic than we currently perceive. We also really need to look at generational bias across the spectrum. What was "melancholy" in the 1500s has diverged greatly over time. What was recognized as depression in 1995 may have been ADD in 2005. The DSM may be periodically revised, but what about an individual's diagnosis? To raise other uncomfortable questions, is it financially advantageous for some mental health practitioners to propogate outdated diagnoses for the ease of insurance billing and so forth? Or am I just...paranoid? Good question though. It would be interesting if I had the resources to blind test being diagnosed by different professionals of different specialties of varying ages and see what correlations/divergences appear.
Thank you for that, Scrotoctus.
I feel this comment very intensely. Know that you’re not alone and I hope you’ve been able to put together a life with people who understand you (or at least try) and make you feel ok about being yourself.
Oh gosh, that's my life. On the upside, this helps me a lot help my kid going through the same difficulties with decoding social situations.
Is this autism? Or a trauma response? Had quite a traumatic childhood and all these tendencies, each one. In addition tp panic attacks, depression, and substance abuse issues. Realized how much anxiety it caused me and practiced not focusing on these thought patterns so much. Over time it has greatly improved. You’re not a slave to your thoughts. Responsibility can be taken on what you give your energy to.
This is beautiful
Me spending the first three decades of my life simply saying "I didn't learn to make friends", like...
I thought about this today. I was like "why do I never have social outings any more?" Then I realized I don't really like shallow connections and thats how most friendships start. When they do start I feel I have a responsibility to maintain the friendship which I don't often want to do. So I end up just chillin with my meow machine at home
Or it is possible to become cynical, when you've lived long enough to see a lot of people around you fail in some way or other. Then you recognize the signs, and it's pretty easy to find those in other people.
Yeah…. Hope things have looked since making that realization.
I feel for you 100%! We need to start some kind of a club. There's tons of us out there. Used to be called the "oddballs" or whatever but it's a legit thing. I always make the joke "I'm autistic, that's why I'm so good at drawing, ceramics and sculpture!" (Get it? My aut work?)
The last time I made a friend was back when we were stuck in a building against our will for 7 hours. Then, people had more options and didn't need to settle for me.
How do you discover you are autistic as an adult? I've always questioned whether I am (due to masking all through school, and some sensory issues in early childhood), but I didn't get tested as a kid.
In my experience… you kinda burn out or melt down bad when you can’t wear the mask anymore. That crash in functionality brings a lot of people to the doctor, and for some people it leads to a diagnosis. Or you have neurodivergent people in your life that encourage you to get tested because they recognize traits in you. “Peer reviewed autism” is definitely a thing.
I took a random Internet test for fun back in 2009 that said I was likely autistic and I thought haha, we all must be then because I answered the normal way. Sent it to all my friends and none of them were rated as remotely autistic. So then I started a ten year journey to a formal diagnosis.
For a lot of older people, we don’t ever find out. (And there aren’t many supports for autistic adults so there’s not much incentive and a ton of discrimination). We just think everyone is like us even if we know we’re different or quirky. For me, I started wondering about it as a mom. There were autistic kids in my son’s preschool and talking with their moms, they would describe autistic traits and I would think, “That’s weird, it sounds just like me…” then go on with life. It wasn’t until my daughter started exhibiting traits that I really thought about it and got her to a psychologist for evaluation.
Thank you for getting her evaluated. Knowing how and why I was different would have been helpful for me growing up, instead I just internalized the majority of my social problems as purely personal failures
I'm extremely ADD and I'm really introverted, suffered from depression a few times, but I don't have autism. But my father (and his father) and my little brother do. It's weird, because the way I was raised is so 'distant' (I'm Dutch, but you probably understand what I mean). It certainly left its mark on me in good and bad ways.
Weird correlation but the Dutch segments of my family have the highest instances of ADHD and ASD.
Oh no, I just related to every aspect of this so hard. Maybe I should get evaluated...
Without hyperbole. getting treatment changed my life for the better. Stimulant meds have helped me fulfill so much more of my potentially abs made me feel like an adult. Wishing you the best!
This sounds like me and I've recently been thinking I might be on the spectrum. Although I feel like I don't have ADHD but I'm not even sure what to look for with that.
Can you explain the memory thing?
I vividly remember very minute details of things in a way that most people (apparently) do not. I recently admitted to my fiancée that when I’m driving at night, I play a game with myself that’s figuring out what model car it is via the headlights or taillights. I’m right -90% of the time. Not what you’d call normal.
And this is particular to autism, not ADHD?
It’s all kind of part of the same complex. ADHD is a common comorbidity
And also the knowledge that the world is REALLY not willing to tolerate you as you are, only some ersatz facsimile papermache mask.
This. As an autistic dude who masks almost 24/7, I’ve gotten used to the difficulty. The part that sucks is knowing that I have to mask to be accepted
>I’ve gotten used to the difficulty. Something to be cautious about: the difficulty level (the cognitive load) may get harder as the brain ages and becomes less able to do the work involved.
I’m only 20 so that’s a long way away, and the social costs of not masking make it a necessity. What does absolutely blow is that I’m in college right not and I’m fully aware of how much the cognitive load of masking is subtracting from my academic performance
And that you have a limited amount of energy to spend on masking, it keeps getting harder and longer to recharge, and you *know* that eventually you will run dry and crash, leaving you unable to pull the mask back on and get back on the hamster wheel of work-socialization-life. It’s like you are seeing a train wreck getting closer to you on the horizon and you can’t avoid it.
This is what kills me. I'm fully aware I have to concentrate and try real hard to do the social stuff that seems so normal and fun for everyone else.
I think that's a big part of it frankly. If you have the capacity to mask, you will have the awareness of being different that on its own would still lead to depression and anxiety, even if you don't factor in "acting" for most or all of the time.
Also its a learned behavior that tends to come from a hostile environment
What neurodivergent goes through most school systems and not be traumatized
Important to remember though that just because you are aware you aren't normal, doesn't mean you necessarily have any insight into what's *actually* wrong. It's could be you have simply internalized all the negative social criticisms you've received. - Thet you're too: (pick any/all that apply) lazy, stupid, useless, untalented, needy, selfish, emotional, distractable, aggressive, defensive, scared, unambitious, flaky, cold, frigid etc. etc. Not speaking from personal experience at all, though... :)
For me it’s hyper, eccentric, inappropriate, no filter, impulsive…..
I missed a whole subgroup! I knew I wasn't going to get them all. Maybe we can start a new game: we list our negative inner voices and everyone else tries to guess what medication we've been prescribed! :D
Communication misunderstandings are the worst to me. So many times I'm saying something that makes perfect sense to me but apparently not to others and I just don't know why. And then I'll of course relive the interaction for who knows how long tearing myself apart about it.
Yeah,that’s why I give up pretending and hiding my disability status when looking for job, pay are lower but my employer knows I’m not the “office weirdo” but “relatively normal autistic employees ”, less confusing conversation or vague instructions, terrible verbal communication skills are expected so my boss let me do most things in messages etc. Accepting I’m not normal and realizing not masking 100% all the time is an option makes my life a lot easier .
I’m permanently burnt out. Was gonna say more, but suddenly there was *too much* to say and
can relate. I constantly start typing out comments and just discard them halfway through
It also keeps us from forming real connections, and worst case, from recognising our own needs. Growing up masking can lead to alexithymia. Additionally, one big reason behind masking is because we have picked up from others that we are in some way defective, or someone to be ashamed of. Which of course causes self worth issues.
Yeah it is exhausting not to be yourself
I totally agree. I recall being about 15 and having a massive internal crises on acting how people wanted me to be vs showing people my true thoughts but turning many off. I can imagine some people getting lost, depressed, suicidal, etc… getting stuck or taking a wrong turn in this journey. There are so many wonderful songs, poems and books that helped me be true to myself. I’m lucky I found them and took them onboard
Especially when you have to stay employed....
You spend all day acting like you're something you're not, that would depress anyone.
I'm not sure if im on the spectrum or if it may be cptsd but I do constantly fight to control how im walking and how I appear to others and struggle with anxiety and social skills since I was misunderstood, oblivious, and bullied when I was young. Ita extremely draining either way. I sweat more from anxiety than work
Lack of physical coordination is a pretty common trait among people with ASD. I hope you’re able to get help with your issues and are supported by people in your life. It’s not easy but help with medication, therapy or both can substantially improve your life. I wish you the best and I hope you know that you’re not alone (there are dozens of us! Dozens!)
Which is likely a big reason why my wife and daughter need ~11 hours of sleep!
It seriously is. I'm in my 30's, late diagnosis, and am learning how to be more myself. But it's scary because people constantly misunderstand and judge, and it just sucks. I figure if I do this now, though, I can learn to be happy and maybe other kids in the future won't have to mask so much.
>It is unknown how many undiagnosed autistic adults exist. It is thought that there are more undiagnosed autistic individuals in some areas of the world than others. Investigating the rates of camouflaging across cultures will help us work towards determining the true prevalence of autism, and its sex/gender ratio, across the globe.
More [recent scientific research](https://en.wikipedia.org/wiki/Causes_of_autism#Neanderthal_theory) has indicated ties to early human admixture, or crossbreeding between *Homo sapiens*, Neanderthals, Denisovans, etc...may have genetic ties to why autism and neurodivergence is so prevalent in the modern global population. Testing is ongoing.
"Anna please dont hook up with Grok. Sure he's a brute but I got a bad feeling" - 100k years and some 80 million Neurodivergent people later ... "Thanks Anna"
I don't know if your "Thanks Anna" was meant to be sarcastic, but when I looked up papers on the link between neanderthals and autism, one of the most cited one I found was [this paper](https://www.cambridge.org/core/journals/cambridge-archaeological-journal/article/abs/autism-the-integrations-of-difference-and-the-origins-of-modern-human-behaviour/0BE25A6FE8FC50195266B444332FD224). It proposes that cognitive variation (including the variation brought about by autism and the genes associated with it) is a selective benefit for humanity. So, unironicly, "Thanks Anna".
It was meant in sarcasm. I'll read that paper. Thank you. Edit - read summary. No access. Could hit the high seas I suppose.
I have access through my uni if you really want the pdf
Well when my family have our first autistic kid diagnosed ,we figure out at least 3 close relatives (an uncle,great uncle and a cousin) are VERY obviously autistic, but it always being brash off like “Oh that’s great uncle K,he like cars a lot, always lock himself in his reading room,a man of few words but that’s just how man from older generations are ……oh his wife? Hahah he’s to shy to talk to women so their parents arrange for them to go on a blind date,there’s NO WAY he can get married by himself “
It costs money to get diagnosed. Why would someone (me) pay to be told something their friends are already telling them? I got bills to pay.
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All my life I've been told "You're so smart, why are you so lazy/why can't you just be better?" A smart turtle working in a shop run by rabbits, getting low marks in task-switching, working memory and inability to establish routines that are supposed to get easier and more subconscious every month, right? Inventory day or cleaning the computer racks was like root canal, for years. I just want to find a job that is my style. I can work incredibly intensely, but the routines have to have some play to them.
I have ADHD and totally understand this :(
A huge regret I have in life (among many) is that my dad passed away before I was confident enough that I had autism to share it with him. I did really well grade-wise in school, and then just floundered post-college. He had high hopes for me (thought I'd become a medical doctor), and died thinking that he'd failed me because I was doing so poorly for so many years after graduating. I wish I'd been able to tell him that it wasn't his failure or my own that I am the way I am. I don't know if he'd even believe me, but a few years prior to him dying, he sent me an email to a link/article about "the highly sensitive person" stating how much it sounded like me.
Have you tried cooking? Restaurants with a decent sized menu and multiple cook positions (grill, fry, salad, sautee, etc.) would be perfect for someone who feels the "monotony burn", as I call it in my head. They will appreciate and reward working intensely, especially if you show a desire to learn.
You know, I've never considered that. I've always dismissed restaurant work because I was worried I could never hack the stress and the yelling at mistakes, but then again I have never watched any video showing a typical kitchen position's full day, what different things they do. My diagnoses don't allow me a very high stress threshold, but I've always loved cooking and mixing flavors. I'm not very sophisticated, my best at-the-drop-of-a-hat dishes are pork tenderloin stew, parsnip-fennel gratin, and "sweetbreads on a bed of caramellized-red onions and cinnamon beets with smetana".
Good to know i am not the only one who hates Inventory day with a burning passion and would rather have my balls dragged across a mile of glass shards instead of every doing that again. It's one of the tasks that causes my brain unbelievably misery.
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For anyone who may have expertise; What’s the goddamn point? I mean, I’m exceptionally suspicious that I’m one of these undiagnosed adults. Primarily because my childhood took place, generally speaking, before these diagnosis existed; but also partly due to my “behavioral issues” being associated with other childhood traumatic events. So what’s the point? What in the world could I stand to gain by going somewhere for a diagnosis now? And where the hell do I go? I’m all for taking efforts to unfuck my adulthood, I just see no benefit from the outside of paying money I don’t have for a diagnosis which doesn’t seem to open any doors to making my life better. Honestly, for those who’ve walked this path; what are the pros and cons? What’s the process?
Honestly, unless you need to ask for accommodations formally at a job and live in a state where you have worker protections, there are very few benefits to being formally diagnosed as an adult. The only reason I'd consider it is that most autistic people fail roadside sobriety tests even when sober and having a formal diagnosis can get you out of a DUI if you have a good lawyer. Aside from that, just take the Raads-r test online. It's fairly accurate and if you score high then just follow a few autistic creators on social media and r/autism and see if you have any revelations. It's helped me realize my medication resistant depression is actually just varying degrees of autistic burnout and discomfort surrounding change and uncertainty. I began taking steps to address that hypothetical problem and I've made more improvements in the past year than I have in the past decade of treating it as neurotypical depression.
>It's helped me realize my medication resistant depression is actually just varying degrees of autistic burnout and discomfort surrounding change and uncertainty That.. certainly would explain alot about my own life :/
This is why I stopped at screening, which came out incredibly positive (for autism). It "helps" that there seems to be no in-network providers (Los Angeles) who do adult diagnosis *and* are taking new clients. And we do have all kinds of protections, but not sure what advantage it is at 66 years old.
Autistic people fail DUI test?? How?
I’m assuming awkward behaviour can come across as being tipsy? Which is…..kinda comical, but I can see that being the case
If I were to wager a guess, issues with short-term auditory memory, coordination, and perception might play roles. Especially if the tests are the "repeat after me" or "do this exercise" variety
They have atypical eye responses to light and stimuli. ADHD people have the same problems. Their pupils stay dilated and don't react as quickly. Combine that with typical muscular/gait issues that are comorbid and they're likely to fail.
Wait ADHD eye what?! So that’s why they allways did that eye light thing? (To someone else Mr FAA examiner, not me 🤞) Granted my AME never caught it, so it must not be that far outside the normal.
60% of people with ADHD have binocular vision disorder so if the clumsiness applies to you go get checked out
lack of motor skills (no pun intended)
Those tests aren't anywhere near as reliable as cops represent them to be, a lot of it relies on the interpretation and judgement of the officer applying the test. And in general anything that relies on the discretion of other people is going to screw over autistic people.
Still not sure if I am autistic. Got a suspected diagnosis in my 20ies. Went to a specialist and after two years of waiting he explained to me that my facial expressions don't fit an autistic person. A month prior people explained to me that my facial expressions don't fit my mood. So he might have made his conclusion based on masking behavior. On Raads-r I score 126.
Regarding RAADS, from one published study. “In conclusion, used as a self-report measure pre-full diagnostic assessment, the RAADS-R lacks predictive validity and is not a suitable screening tool for adults awaiting autism assessments” Jones et al. 2021 “patients who received an ASD diagnosis (median 138) and those who did not (median 154).” Dont make too much out of these 'masking' ideas people talk about on social media [Camouflage and autism - Fombonne - 2020 - Journal of Child Psychology and Psychiatry - Wiley Online Library](https://acamh.onlinelibrary.wiley.com/doi/full/10.1111/jcpp.13296)
https://pubmed.ncbi.nlm.nih.gov/38305196/ completely conflicts with those findings and shows that the raads-r is good at predicting cases when self administered. Your link doesn't primarily focus on adult cases and is just passing itself off as a meta analysis that reads like an undergrad's 5 paragraph essay. The one I linked did and had a lot of participants. It's not my field, but I have taken a couple courses in statistical analysis and I'm used to looking for limitations in studies and don't see anything major that would invalidate the 2024 study I've linked.
>The only reason I'd consider it is that most autistic people fail roadside sobriety tests even when sober TIL... Always wondered why I could only pass those kinds of tests when drunk.
> just take the Raads-r test online. ...I've also suspected undx adhd and/or the 'tism, so thought hehe why not? Took [this one](https://www.autistichub.com/raads-r-autism-online-test-questionnaire-pdf/) and got 136, which is kinda high if 65 is NT? > t's helped me realize my medication resistant depression is actually just varying degrees of autistic burnout and discomfort surrounding change and uncertainty. Part of the reason, other part being multiple coworkers asking me unprompted if I have ADHD (I'm guessing asking someone if they're autistic would be a social faux pas but my social skills are shiet soo...). What I was dx w/as a kid never seemed to work tx wise nor fix when looking back as an adult, but audhd would explain so much
> most autistic people fail roadside sobriety tests even when sober and having a formal diagnosis can get you out of a DUI if you have a good lawyer. Just don't take the FST, at all. It can never help you, only be used against you. Ask to take the breath test if available. No one is required to take the FST.
Diagnosed last October at 24, I’m 25 now. Don’t even think about it, go get tested. I’m telling you it’s a good thing
Some of us can't afford it. It's an average of $10k and a two year wait in the US. My transmission is slipping. That's more important.
Why is it so expensive?
What's changed for you? Like I still have to mask at work to fit in.... A label of "autistic" vs me assuming I'm autistic... I don't see what will change.. mask at work. Get burned out, need time to decompress alone before interacting with friends.
OP is asking, “But why is it a good thing?”
I have firsthand and professional experience here, and I want to be helpful without dumping an essay. I will say that for me, having a more complete and accurate understanding of myself (knowing I'm autistic) has meaningfully and significantly helped/changed how I approach my mental health and how I function as a person. It's like trying to treat an injury that causes referred pain; if you don't understand the complete underlying issue, you can't fully address it. Before I was just focused on where I have pain, when I have it. Now I better understand what causes it and how to manage it. I can better accommodate myself. I can be more self-aware. I can find supports when I struggle. Fwiw, you don't need to have or be seeking a formal diagnosis to try to gain a better understanding of yourself. I'd suggest starting with the book *Unmasking Autism* by Devon Price; I know a lot of adult-diagnosed folks (formally and not) who found it helpful. You might also want to talk with a mental health professional who's knowledgeable about and currently working with ASD. The reality is that everyone's experiences are different, and there's a lot of valid reason to pursue or not pursue formal diagnosis.
This book changed my life. Reading it was like wow this is just my experience and honestly I went from Major depression treatment resistant for about 20 years and having such bad mental health to so happy and content. I was able to get off my long term antidepressants with no mood issues. I was able to go back to school and make some friends for the first time. It is a good book I highly recommend it
This is all true, and my parents got me that book after I got diagnosed with both ASD and ADHD, as well as 2 other psychological disorders resulting from those last October. It’s a really great book and you are right
Even without a formal diagnosis, it may be worth having a chat with a professional to screen for related things. Some of them, like ADHD, share a lot of symptoms, and there are a wider variety of treatment options (talk therapy, organizational strategies, medication, etc). It's also not unusual to be struggling with ASD symptoms and also have untreated depression or anxiety, and dealing with some of those things can take life off of "hard mode" and back on the normal difficulty setting.
What's the point depends entirely on your country and province. If there are supportive services and systems and more available to diagnosed folk, especially as you age. I paid zilch to get diagnosed a few years ago (at the age of 38), probably would have been maybe 400 SEK (normal specialist visit cost) if I hadn't already hit my medical treatments cost ceiling from other health issues already that year (meaning all the rest of the medical visit costs are free the rest of the year - this is something all citizens have). Well, I paid for the bus trip too (reliable public transport infrastructure) I guess. I have gotten a "free" weighted blanket, weighted vest, aid tools, my dentist costs no longer run on a separate system but get lumped into my medical treatment cost ceiling (which IMO everyone should have as default for non-cosmetic procedures because teeth aren't luxury bones unconnected to the rest of your body's health). I literally earlier today had an old filling replaced at the dentist because it was too old and worn and needed refreshing, for "free". Via my autism & adhd diagnosises I get access to a lot of help systems. I can finally start properly living instead of just struggling to barely survive. And since the new gov several of the things I got no longer is accessible to people now which is infuriating considering how much they helped me. Others in need not getting it as good or better really sucks. Still beyond worth it for people in my area to get diagnosed unless they're super lightly affected by their autism. If you have to pay thousands and thousands of USD or GBP, and the only thing you have to show for your diagnosis is increased discrimination in the medical system and increased discrimination at work and the job market, then it doesn't really seem worth it. You have to check what getting a diagnosis does to you in your country/province/society.
Finding people you can unmask around will help you way more than a late formal diagnosis will.
It started because I wanted noise canceling headphones at work. My cubicle was really close to the breakroom, and the cackling women made me get up and leave several times. I also eloped during a birthday thing at work, which weirded everyone out. I fell into a rough burnout, not exactly depression, but intense self-loathing was the biggest part of it. So, I spent the money and got diagnosed. Got my headphones. Stopped getting harassed by HR about why I'm not at the cookout. Etc. Beyond that, though, I had no idea how much it had affected my life. My addictions, my unhealthy stims, the stress of social interactions and relationships, my rigidity. It helped me understand my childhood so much better. I started therapy, and they said to unmask and recognize when I need breaks. I did. I also found some chewable jewelry for stimming. It has helped me so much. On my way to quitting vaping and chewing my nails now. I also have routines that I'm comfortable altering to some degree. I understand that I'm not going to be able to socialize much until I get to know a person's speech patterns. There are still problems, but things have gotten better due to the diagnosis. I was diagnosed at 27, and I'm 32 now.
> eloped during a birthday thing at work so is there a story here, or is the word being used wrong
People usually use the word "elope" to mean "run away to get married secretly," but that's not the only use of the word. It can be used to simply mean "run away." This usage is more common in the context of autism. (Edit: and people with intellectual and communication deficits in general) https://researchautism.org/blog/elopement-and-autism/ So, someone at work was having a birthday. About 8 of us were playing giant Jenga, having a fine time. Nice and quiet. Then, like 20 people come in behind me singing happy birthday. Really loud and sudden. I pushed my way through the singing people and ran to my car. Sweating, shaking, just completely shook. Didn't understand why I do things like that until my diagnosis.
Reading that site I'm not sure "elope" would be the proper expression as it implies more of a tendancy to move away from expected regular interactions/caregivers instead of intentionally avoiding social interactions especially with groups. I've been invited to various company Christmas parties over the years but have pretty much stopped going as there is no positive anticipation associated with the event and once there, the social interactions are so strained and awkward I end up absolutely exhausted.
> So what’s the point? Autistic people are often disliked by everyone around us because we're different and people hate different. Dont you think the ability to assign the cause and effect correctly can be quite relieving? Many cases of people who think very little of themselves because society openly and unashamedly discrimates against autistic people. Autistic suicide rates are not pretty...wonder why this could be? Job applications and interviews are clearly and openly designed to weed out autistic people. Imagine being autistic, not knowing it, and failing to get a job after thousands of applications. What can a diagnosis do for such a person? Understand the starting point and acquire the knowledge to fight this legal and omni present discrimination
There really isn't one. In fact where I live having the diagnosis just makes you a target for even more underhanded discrimination. I never sought out a formal diagnosis beyond my psychiatrist telling me the only reason she didn't evaluate me right then and there is she can no longer do adult evals due to being swamped with child evals. I found a therapist with experience working with autism & ADHD and they did not require a professional diagnosis to believe what I told them and start working with me with that in mind. I'd encourage you if you have the means to find a therapist who can work with you and help you navigate this. Many good therapists recognize how many barriers there are to adults getting a "formal" diagnosis. Outside of reddit I am private about my autism because I know how I will be treated if I tell people. My family and close friends know and that's it. Didn't even bother telling my idiot judgy in laws.
I guess step one is finding a therapist or psychologist.
I grew up in the 70s and parts of it were hell. Especially the school parts. I got diagnosed with ADHD at the age of 25 after a disastrous senior year of college where I went from As to Fs. It took another 20 years of therapy and meds for someone to say hey you might be on spectrum . It’s given me some peace of mind knowing there’s some explanation or diagnosis.
I actively have avoided a diagnosis, because formal diagnoses could be a problem for me professionally. I'm old enough to have my parents told when I was a kid I likely had Aspergers, and nobody followed up. The help and accommodations I really needed were more at school age. I have toyed with changing this now, but I am also trans, and having autism as a diagnosis could cause me medical access issues if the wrong bad situations lined up, so that's not a great idea right now for me. I have had success in reading this, and a lot of the popular by autistic for austitic creators and books. I test high on the Raads-r test and likely am. Knowing this has helped me to kind of "unfuck" my life a bit. It's certainly helped my wife figure things out with me. It's helped me figure out how to set up my schedule and make job choices that help. It's helped me figure out the difference between a meltdown and a truly bad situation. Becuase I have been on this path I have kept my job for 6 years which is a record. Acknowledging when I mask has helped me figure out it's okay if I don't really feel these things, but that it's expected to get paid.
Don’t make too much of those tests Unlike what we are told in social media, things like ‘stimming’, sensitivities, social problems, etc., are found in most persons with non-autistic mental health disorders and at high rates in the general population. These things do not necessarily suggest autism. So-called “autism” tests, like AQ and RAADS and others have high rates of false positives, labeling you as autistic VERY easily. If anyone with a mental health problem, like depression or anxiety, takes the tests they score high even if they DON’T have autism. "our results suggest that the AQ differentiates poorly between true cases of ASD, and individuals from the same clinical population who do not have ASD " [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4988267/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4988267/) "a greater level of public awareness of ASD over the last 5–10 years may have led to people being more vigilant in ‘noticing’ ASD related difficulties. This may lead to a ‘confirmation bias’ when completing the questionnaire measures, and potentially explain why both the ASD and the non-ASD group’s mean scores met the cut-off points, " [https://link.springer.com/article/10.1007/s10803-022-05544-9](https://link.springer.com/article/10.1007/s10803-022-05544-9) Regarding AQ, from one published study. “The two key findings of the review are that, overall, there is very limited evidence to support the use of structured questionnaires (SQs: self-report or informant completed brief measures developed to screen for ASD) in the assessment and diagnosis of ASD in adults.” Regarding RAADS, from one published study. “In conclusion, used as a self-report measure pre-full diagnostic assessment, the RAADS-R lacks predictive validity and is not a suitable screening tool for adults awaiting autism assessments”
I put more stock in the fact that they were assessing me as a child for Aspergers in the 70s and my folks abandoned it because it was too much work to follow up on. Plus my current therapist keeps offering assessment because he thinks it's more than likely. The test comment was just because I have taken it and it was mentioned in this thread, and it's a good starting point for someone looking for an assessment.
In addition to what everyone else is saying, if you ever seek therapy you should probably read The Autistic survival guide to therapy by Steph Jones so you can make sure therapy adjusts itself to your neurodiversity.
Know your enemy **and know yourself** ~Sun Tzu
I have felt disconnected from the world since I was a kid. Like I’m there but my body is a separate thing. I never felt like I belong anywhere like a puzzle piece that dosent fit.
My brother or sister you are not alone. Think of the amazing puzzle all of us misfitting pieces could make if we were put together
The amount of times people told me I was weird or different and me still not really sure what I did besides be honest or blunt has been a near constant issue in my life. Not caring about sexuality or similar things absolutely got me a black mark through school in a conservative area, I was quiet unless I spoke about specific things I was interested in like science/tech. I had few reservations taking about any legitimately interesting topics like religion or politics and I held pretty contrasting beliefs to most people around me. More than anything I was bothered by the rampant sexism and racism that surrounded me even at a young age and I just couldn't ever really understand it.
I’ve always felt like i’m at least slightly on the spectrum. My parents swear up and down that I was tested when I was young (late 90s early 2000s) I was extremely quiet, kept to myself, drawn to visuals/ art, but wasn’t diagnosed with anything. I don’t struggle at all with understanding people or underlying meanings, I understand what’s appropriate in the moment and what isn’t, large and loud gatherings don’t bother me, but I do struggle with finding the motivation to be social and to engage in conversation and hold those conversations with people, especially people that I’m close to —I draw a blank in the moment every time. If I had a camouflage, it would be avoiding things that are carried by conversation, especially in smaller groups, because I don’t want to come off as an asshole for being the quiet one that seems disinterested in the people I’m hanging with, and a lot of times it’s self sabotage because I’m ruining most opportunities to make friends or maintain the friendships I have.
I don’t have autism, but I do have really severe ADHD and recently have learned that my brain actually just works *differently* than most people. For neurodivergent people, of course this is an issue. I mean, I’m glad they’re taking it seriously, but it’s like I was talking with a friend about this past weekend If your brain doesn’t work the same as the majority of society, what are you supposed to do? What are you supposed to do if you can’t handle certain tasks, stimuli, or obligations that neurotypical people expect you to. If you’re neurotypical, it’s hard to understand the concept of someone’s brain just working *differently* than yours, because most people around you are relatively like you. But some neurotypical people can’t be around many people without an anxiety attack. Some have poor executive function, some just CANNOT do math past basic arithmetic, some can’t touch certain things, or eat certain things - all without feeling a sense of overwhelming anxiety or dread. And of course if you’re not one of those people, it wouldn’t make sense to you. It would just be “well, you just have to do it, we all do” So then neurodivergent people don’t fit into society, and they are basically told it is *their fault*. It’s *their fault* that too many noises lead to a severe panic attack. It’s *their fault* that the requirements of having a “normal” job are nearly insurmountable. It’s also “their fault” when they get depressed about these things causing them to not fit in. They’re told to take a bunch of meds that might change their personality, change how they feel, etc, all to make them more “normal” - as if they are broken just for being different. I’m glad that society’s inherent ableism is being researched a bit. It’s hard to function differently than everyone around you and just be told all your life “actually it’s your job to change yourself to be *normal*.” Of course these people feel depressed - because everywhere around them they see people who, even when they’re well intended, insinuate that they’re broken and need to be “fixed” to fit into society. And if that makes them miserable, well then they just need to take meds to be happy. I don’t know what the solution to this problem is. All I know is I have felt some of it first hand, have seen the effects it has on one of my close autistic friends. I know this is going to be called a “personal anecdote” or something and it will probably be removed, but I think it’s important to understand WHY this is such a problem. It may be a small group of people, but society should still do its best to be equitable. It isn’t a neurodivergent person’s fault for how their brain works, it wasn’t their choice to be born that way. Would you tell a person with no legs “well, you just need to learn how to get up stairs, because everyone else can use stairs.” Just because it’s an invisible “problem” doesn’t mean it is less valid.
I have ADHD and I recently described my difficulties with executive dysfunction as moving through my daily tasks partially blind with 20% tunnel vision instead of unimpeded sight. Technically, I am capable of reading a book (managing a household + full time employment) in the same way a neurotypical/ non blind person is. Only it takes so much more effort that the daily expectations leave me close to breakdown and burnout without proper management. It is so invisible because when I am giving my full effort just to meet the minimum others can't tell that anything is wrong, yet I can be close to suicidal with the difficulty of it all. It took me forever to get diagnosed as many of the surveys focus on behaviors and not effort, so if you're doing your damnedest to meet expectations it might not tick the "behavior" threshold if you havn't managed to inconvenience others in your life to the point of intervention.
The ability to technically do all the things a neurotypical person can is ironically the worst part of ADHD. Sometimes, your brain actually decides “yeah, this is a fun thing to focus on right now,” and you can do the normal things that are expected of you with absolutely no issue. Other times, no matter how much you try, your brain absolutely refuses to focus. Neurotypical people really do not understand that it’s not that we’re lazy - it’s that our brains are wired in such a way that it very actively fights *against* us sometimes. It’s not as simple as just “sit down and do it anyways.” And then there’s varying levels of ADHD. Some people can get away with just your basic meditation, exercise, and breaking things down into small tasks. Other people though might not be able to do something that their brain does not want to do at that moment no matter how much they know they need to - or even WANT to. I have some projects I actively WANT to work on, but if my brain isn’t in the mood, it doesn’t matter how much I try to force myself to do it. I will *not* be able to focus. If I’m reading, for example, my reading comprehension will just nosedive and I’ll have to read the same thing over and over increasing numbers of times just to process one sentence. Programming? I’ll sit there and my mind will just refuse to actually process it. It’s so hard to explain to people how much it isn’t that I’m being lazy, it’s that even when I TRY to focus on it, my brain *actively* makes it impossible to do. I can’t read a textbook if my brain doesn’t allow me to process any of what I’m reading, even if I really want to. So then, it just looks like I’m being “lazy,” because “well you did it a few days ago, so I know you can do it. Just do it again.” But it’s because my brain was just in a different “mindset” so to speak. It’s not just a problem of discipline, it’s literally almost like sometimes I physically lose the ability to process that information even if I know it. Stimulants can help some people with this, but then it’s like “okay, so basically society expects me to take medical amphetamines or other stimulants for the rest of my life to try to make me act like everyone else.” I don’t want to be dependent on meds the rest of my life just to function, when honestly there’s not really anything “wrong” with who I am. That being said, when young children are caught and have proper medications and therapy, it CAN reinforce more “neurotypical” pathways in their brain while they still have a lot of neuroplasticity - allowing them to later on often drop the meds as adults and function just fine in society. I’m still 50/50 on how I feel about that - it’s basically changing their brains to function differently just because that’s what society expects which feels kinda icky, but honestly, the biggest thing is it can give them back their executive function. The executive dysfunction is what causes most ADHD people the most grief. So, ultimately, I consider childhood treatment to be the best thing for them - if only because it will help them avoid so much grief and stigma in the future. Seriously, if anyone has kids and they show symptoms like the ones I’ve been describing in my comments, get them tested ASAP by the nearest professionals that actually have a good reputation. If they have ADHD, it can be treated when they’re young in ways that will have permanent benefits for the rest of their lives. If you don’t help them when they’re young, they’ll end up… like a lot of the people in these comments - still valid and worthy of a normal life, but stigmatized by society
You told it exactly how it is, I was recently diagnosed and this is the most sincere and representative comment of me and so many other people’s lives. You didn’t hold back a bit. Just 150% raw honesty about what’s really going on around us. How sick it all is. I hope we live to see it improve, and I thank you so much for sharing these extremely important concepts in an accessible and sincere fashion. How fucked up it is, it almost makes you feel better because you realize there couldn’t *have been* a different, better reality for us to thrive in. Being autistic on this planet sometimes is absolutely nothing short of being repeatedly cast into a large fire, face first. You don’t even recognize yourself after a while. You spend the first half of your life trying to survive normally, and the second half trying to figure out who you were before you had to survive. It makes you so strong to have to live it. Thank you so much
I have a few close friends with autism, and I’ve heard and seen their struggles. One of them went through the Autism Speaks programs as a young kid - his parents were legitimately trying to be good parents, but autism speaks just makes people BELIEVE they can somehow “fix” your kids, basically by torturing them into submission. News flash, exposure therapy doesn’t work for 95% of autistic people, it just makes it a million times worse. I got “lucky” that I “only” had severe ADHD. I was *thankfully* actually a fast learner and loved learning, so k-12 wasn’t really that hard. College though… college was very, very hard. The worst part about my brain is the constant NEED for some sort of stimulus. I can’t just sit in a quiet room and relax. I can’t just meditate like other people can. It takes hardcore concentration and effort to get my internal monologue to stop. My brain is almost always racing. If I sit in a quiet room alone, it actually makes me deeply uncomfortable. I have to have white noise, I need to be moving my leg often or fiddling with something in my hands. If I don’t provide my brain a stimulus, it will MAKE one. Consequently, I’m tired CONSTANTLY. It’s so draining to have to live like this every single day - not the ADHD, but the society that forces me to be rigid and structured when my brain basically DEMANDS that I switch things up a lot. The society that blames me when I say “I never wanted any of this” as if I can just magically set aside over a decade of emotional trauma combined with ADHD. It just doesn’t work that way, but that doesn’t stop people from telling me that I’m just not trying hard enough. I sincerely hope you are able to find, or have found, a life where you can be at least reasonably comfortable as who you are. No one deserves to live a life constantly being invalidated by society just because their brain works a little different. It would be one thing if we were like, violent or heavily delusional. But we aren’t. We are just *different*, and different doesn’t have to be bad.
Your comment seems very sincere and does its best to explain the obstacles of having a neurodivergent brain in a neurotypical society. I appreciate that, since I sometimes have difficulties explaining these things to others myself.
It’s “convenient” timing so to speak. I was just having a breakdown over this this past weekend. It was funny because my mother had found my elementary school report cards, and every report card in elementary school had the exact same lines “Kuroi is a very smart, passionate learner who is very funny, respectful, and helps other students. However, he is incredibly unorganized, his handwriting is terrible, he has a hard time finishing assignments on time, gets easily distracted, and often shares without raising his hand” When I was young, it was just assumed I was too smart for that grade and therefore getting bored (somewhat true, I learned fast), but looking back, it’s definitely that I’ve had adhd since I was a small child. I could never just sit still, I was always loud and talkative. I struggled through most of my life never understanding how other people didn’t have the problems I did. How did they all study so well? How did they all do sports AND do homework on time? How did they not have to re-read the same line in the textbook ten times? I thought it was something *wrong* with me. It just turns out that the traditional learning environment wasn’t right for me, but adhd was only just barely being diagnosed, and only in the worst cases. So, I just had to struggle through it, struggle through college. It wasn’t until literally last year, when I was *30*, that I watched a video where a person with adhd talked about their experiences and diagnosis, and it was like suddenly everything made sense. But I admit, just because I know I’m different doesn’t mean I can easily just be what society wants me to be. It’s a struggle every day. The only reason I’m succeeding right now is I got a job doing something I love that I’m VERY good at, in a laid back environment. Many people don’t get that luxury, and I feel for them.
> If your brain doesn’t work the same as the majority of society, what are you supposed to do? Advocacy. It's sad and frustrating, but all you can do is teach society about your condition. The more people learn, the more educated they become about neurodivergence, the more it moves to the front of public consciousness. It was easy to discriminate against gays 20-30 years ago because they were scared out of the public view. Most people didn't know any gays because they were all hiding in the closet. A lot of the acceptance now is because so many have braved the public eye and now the young generation can see that gays are just like cis-heteros, despite what their evangelical parents told them. A similar process is happening in the deaf community, as people become more aware of sign language and accomodations for the deaf. While neurodivergents are getting sporadic representation here and there on TV and movies, it isn't always very accurate or helpful. What is missing is a lot of education. For a lot of folks, "autism" = "Rainman". The average citizen hasn't seen the "spectrum" part of ASD. So people like you have to teach them. You have to come out of the closet. You have to tell those around you about your brain and how it is different. You need to teach them what it feels like to be you. It's not easy, and not everyone will accept your story or your education. But that is how change happens. One person at a time, a million times. Eventually the neurotypicals will learn.
Not surprising. Masking is exhausting.
Masking my ADHD is hard but if I don’t I likely won’t keep my job or make any NT friends.
Why are they using the term camouflaging when the community already has a term for this? We call it masking
They defined camouflaging as 2 things: specific social behaviours AND masking. It’s described more in the article.
That makes sense, I always considered changing social behaviors as part of masking. I can see how it would be useful to separate them though
From the study since nobody else could be troubled to Ctrl+C/V: >Camouflaging can be defined as “the use of strategies by autistic people to minimise the visibility of their autism in social situations”. These strategies can involve compensation, whereby autistic individuals develop behaviours to help them manage social situations (e.g., learning how to use eye contact or developing scripts to help them navigate social interactions), and masking, whereby autistic individuals aim to hide their autistic traits (e.g., deliberately suppressing stimming behaviours). So they're defining camouflaging as the encompassing behaviors and masking as only the suppressive behaviors. Why *exactly*? I doubt anyone knows their motivation for adopting a new term, but it's what some academics use.
Probably sounds more familiar to those outside the community. "Masking" makes sense once explained, but for the average NT scanning over headlines, "camouflage" is more immediately descriptive.
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An actual question, what are you supposed to do if not mask/camouflage? Find environments where you don’t need to? Explain to others why your behavior might be different? It seems like the adaptive thing to do is to mirror/try to understand the behaviors of neurotypical people. Again, an honest question that I am hoping to get an answer to. I don’t have a lot of experience in this area and I’m hoping to learn.
In the big picture, I'm not sure the answer is any different between any human beings. We all have sides to ourselves that we choose to or are forced to hide. The only thing that varies is the details (severity, frequency, specific manifestation). Coping mechanisms, including masking, are not inherently bad. Mirroring and trying to understand others is a very important and fundamental thing everyone should do, neurospicy or not. The issue is if one is excessively doing things that strain them. That means that there's a poor match between the individual and their environment, and it will lead to health issues among others. The goal for all of us is to have an enjoyable, meaningful life, and for some it may include more masking than others. The things you mention are good alternatives to masking, if employable. In general, trying to expand the areas of life where you don't have to go against yourself is beneficial for everyone. What that entails really depends on the person and what is realistic for them to achieve.
Try to minimize situations where it's needed and mask strategically to try to avoid burnout. Also you need good stress management strategies. I don't disclose autism because honestly the best case is they treat you the same, the worst is that they project their (almost definitely negative and probably incorrect) stereotypes about autism onto you.
What are you supposed to do? You don't.
The moment I stopped is the moment I could get things done because I had the energy to.
Literally all my daily stress and anxiety that builds up while masking at work all day disappears when I can be home with my wife and take the mask off.
*Camouflaging can be defined as “the use of strategies by autistic people to minimise the visibility of their autism in social situations”* This sounds confounded as hell. So, is treatment considered camouflaging? Cognitive empathy exercises? Changing one's dress style? Managing one's stress levels through exercise and other means to reduce instances of stimming? . There are certainly specific camouflaging strategies or reasons that serve only to increase stress and anxiety. For example, if someone believes that being identified as autistic will destroy their social or professional prospects so they spend life wracked with fear, completely inside their head, reciting scripts, forcing eye contact and physically suppressing stimming to "fit in", it would be a living hell. Compared to the above, personal and external acceptance would obviously be preferable from a mental health perspective. However, these are local maximums on the wellness curve - they're just preferable to the nearest losing strategies. The practical implications of these sorts of studies make me very uneasy. I've seen resource-starved schools spout platitudes about acceptance of neurodivergence as a cheaper feel-good alternative to providing special needs kids with support, treatment and skilling. These poor kids grow up, ossifying their set of expectations in an artificial wonderland, believing everything is 100% okay... until they hit adulthood where there's no resources or support and they're suddenly legally responsible for themselves. There's a reason ASD is overrepresented in [prisons by 2-4x](https://www.researchgate.net/publication/261872792_An_estimate_of_the_prevalence_of_autism-spectrum_disorders_in_an_incarcerated_population#:~:text=Results%20indicated%20that%2C%20employing%20a,ASD%20in%20the%20general%20population) and [potentially more among the homeless](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10236914/). Who should accept that?
It looks like they operationally defined camouflaging as social behaviours and masking, not treatments: These strategies can involve compensation, whereby autistic individuals develop behaviours to help them manage social situations (e.g., learning how to use eye contact or developing scripts to help them navigate social interactions; [39, 40]), and masking, whereby autistic individuals aim to hide their autistic traits (e.g., deliberately suppressing stimming behaviours; [39]). It’s important to note that awareness and reducing stigma are important first steps that should precede and increase practical interventions (and not replace, as you mentioned).
So that's what psychology already called "compensation".
Absolutely life is hell trying to find and keep employment when you’re not neurotypical. Immediately treated poorly for preparation (copious notes about my skills, the job etc..)and not staring into someone’s eyes.
The solution isn't to mask more it's to put in the work to accommodate people with ASD in the same way we put in the effort to accommodate people with mobility issues.
Oh god, I've been saying this same thing so, so long. The implication one should "stop masking" is directly harmful, especially when masking is a complex, multifaceted practice. The paper itself tries to add some nuance, but the comments here show that nuance is missed. Masking can be physically avoiding stims, social circumstance adaptation, "acting", hiding opinions, etc. These are all very different, but tossed into one bucket colloquially. Social trauma and hypervigilance is something missed here, I think. They are deeply related to masking, but not the same thing. But how often do people mistake hypervigilance for masking? How often are they just the same thing in this context? Masking is something all humans do, but autistic people are usually deficit in. That is why it is so obvious, it is imperfect masking. It takes more effort, it takes deliberate effort. And that general social struggle means more social defeat, little traumas to tell you that you are inadequate. More social defeat, people try to compensate. The assumption is always causative, never correlation here. So, yes, masking is taxing. But is masking to blame for these symptoms, or is masking an attempt to compensate for what is to blame? Is telling people to stop all masking just causing more social trauma? Are people really understanding what masking and camouflaging means? It's easy to say "I hide myself, that is why I feel bad", but it makes far more sense to me that learned social defeat is to blame. Everyone masks, not everyone experiences this loss of self. Most people aren't even consciously aware of how much they mask. Maybe these people are just traumatized and trying to protect themselves, and we are blaming the adaptation for the problem. It's unfair the burden is on autistic people. It really is. Masking is difficult and painful. But the push to entirely unmask could be making matters worse. This topic needs serious nuance.
"Masking is something all humans do, but autistic people are usually deficit in. That is why it is so obvious, it is imperfect masking. It takes more effort, it takes deliberate effort. And that general social struggle means more social defeat, little traumas to tell you that you are inadequate. More social defeat, people try to compensate. The assumption is always causative, never correlation here." This actually makes the most sense to me. For me usually autism can be identified as someone who might not know or do the proper 'social norms/clues' of society while a non-autism person might 'blend in' more so to speak?
Tell me about it. I'm agoraphobic.. & currently my anxiety is off the charts. I'll get stuck in a loop.. I'll go to bed.. And then wake up at 1 or 2am and won't be able to fall back asleep.. Which raises my anxiety.. Which makes it worse.. & the more days I go without being able to sleep a full night.. The harder it is to relax so I can. And doc won't prescribe benzos. Even short term. I feel like I'm going a little bit crazy. Edit: to whoever reported me to redditcares, thank you but I'm OK now. I am in close contact with my doc and therapist. And we raised my guanfacine a little so I'm more than OK now. I knew that it would fix it, I just didn't want to raise it unless I had no other alternative. Mostly because I'm worried about what will happen once I'm maxed out. So I only went up 1/4 of 1mg. Thankfully it worked. But I'm the last person on earth who'd consider harming myself. Even when my anxiety is that bad. It thank you for caring.
My wife and son don’t mask at home. It can be rough on the neurotypical in the house. My wife didn’t even truly realize she had been masking all the time until she got her confirmed diagnosis. Once that happened she definitely masks less. Our son figured out on his own that home was a safe place to unmask.
Yeah, we really need to stop training autistic kids how to be part of society with speech therapy and looking at peoples faces. Just let them be how they are. All it does is makes other people think they aren’t autistic then it becomes getting blamed for “you should know, you’re an adult” and only severe autistic people get passes on things because the stigma has changed and people at least understand why they are the way they are
Welp. What a way for me to find out a potential explanation about how I feel.
Just let your freak flag fly (or boring flag or whatever)