This jumped out to me.
I suffered pretty horribly as a kid. On top of the autism, my father was abusive, one of the few friends I had died at 9 years old, and my mom was diagnosed with cancer shortly after. I began to act out, and the school I was sent to helped me learn to "pass" was so horrible I ended up writing about it anonymously for Boing Boing.[1]
Later in grad school, a counselor would point out that on top of the autistic spectrum issue, I may have CPTSD from the treatment I received from the teachers in the alternative school that my acting out caused me to be sent to. It's not in the DSM, so I can't really get anything for it.
I went to college hoping for some stability - anything beyond help desk in my hometown required a degree. College made me "overqualified" for those roles but didn't quite get me to the point I could get a systems admin or software engineering role. In fact between self care and classes, my technical skills declined a bit from when I was 18 to 22.
A professor who I took a job with due to the flexible schedule saw promise in me and encourage me to go to grad school. I don't need a ton of money to be happy, so I figured maybe acquiring some prestige would eventually lead to a decent job - I never wanted to be a professor but I didn't see any other path forward.
I burned out partway through grad school... I managed to pass my quals so I could prove leaving was my choice and left with a master's. Tried working for a smaller company who I told I wanted work life balance, but ended up being laid off despite putting in as much (and sometimes more) hours there than I did in grad school.
So now, like many of the guys I went to school with all those years ago, I live with my parents. The difference being that most of those guys spent the past decade as NEETS. I'm not going to claim living on disability is a picnic, but I sometimes wonder who's smarter: the "genius" who spent a decade trying to push boulders up hills until he got crushed, or the American Hikikomori sitting in their parent's putting in their 10,000th hour of Call of Duty.
[1] https://boingboing.net/2013/01/05/pedagogyofthedepressed.htm...
Today a recruiter crashed one of my mental containers when she made an API call to me telling me she had an opportunity for me and I responded with 200 "I've got a new role now that I'm happy with" then she fired a GET request for the company I am currently working. I don't implement that method on the social contract (I commented it out recently) and instead just returned a 404. She then immediately fired another GET request for the same information and my mental container just crashed. Just hung up and ended the call. That isolation is great though because I went straight back to enjoying my beer.
I feel like if I ever do get to that point. I would just spend the free time recuperating.
And then on top of that, depending on how far one is on the spectrum, it can be hard to judge people. It's not that you can't do it at all - it's that you are never really confident that you've got it right. And having an emergency plan that you're not confident in, but you know you will need to rely on at some point, can be very stressful in and of itself.
This has been me for the last few months. I just can't bring myself to do things I hate lately. I hate breathing cold, dry winter air and feeling it on my face, I hate being accosted on the street for cash, I hate the loud construction noise, I hate navigating through crowds of people and cars, I hate the overwhelming smells from exhaust and food trucks. I was able to deal with it for a while because I knew the expectations that came with living in a city like Seattle. It's just that the downsides are so many, and the upsides are so few. I want to preserve the facilities I have for doing things that I like and that allow me to make a living.
I'm hoping an upcoming move I've got planned will make it more pleasurable to engage with other people more regularly, but protecting my well-being still has to come first. I'm so incredibly fortunate to have a career that allows me enough income to offload menial things like shopping for groceries. I feel terrible for those of us on the spectrum without that option, as if I couldn't live this way I would end up being entirely dependent on my spouse or family. I can imagine that burning out + feeling guilty about being a burden financially makes recovery from that state even more difficult.
I used to push myself to go to dev meetups and such, even gave a few presentations, but eventually stopped. The emotional cost of going was high, and when I would get back home feeling wiped out and reflecting on it, I realized I actually gained very little from the experience. All the socializing was just hollow small talk and no lasting connections were ever formed. Interest-based meetups I've found to generally be transient, ephemeral, and unfulfilling for those who can't muster the enormous social buy-in to get any meaningful results. Volunteer work was more satisfying, but also fleeting and temporary.
On the plus side I did gain experience in public speaking and discovered it really doesn't bother me (although the mingling afterwards is social anxiety hell). Unfortunately that skill on its own isn't terribly useful.
> I feel terrible for those of us on the spectrum without that option, as if I couldn't live this way I would end up being entirely dependent on my spouse or family. I can imagine that burning out + feeling guilty about being a burden financially makes recovery from that state even more difficult.
It is. I was swinging a remote-work career and doing the whole order-groceries-online shut-in routine as well. Eventually I succumbed to burnout for a host of reasons and the career crumbled to dust. Extended unemployment pulls you in like quicksand and I've been out of work for over a year now. I live in a converted tool shed in my parents back yard, and the guilt and shame is crushing. The erosion of self esteem saps your will to improve yourself, creating a vicious circle.
My last recourse at this point is to try to use this as an opportunity for learning and personal enrichment. While working I was myopically focused on programming and industry issues, and utterly ignored the wider world. I'm now trying to rectify that by reading more about philosophy, politics, history, etc.
There's so much more to the world than tech or vocation, and I regret ignoring that for so long. My advice to anyone in this situation is to, as much as your circumstances permit, expose yourself to a wider range of culture and find value and human dignity in ways other than your potential for capital generation. The value of a life is not measured in dollars, and don't let the world convince you that it is.
It feels like this is becoming a blog post or something, so I'll stop. Needless to say this topic hits home for me, as it seems to for many others here.
I agree entirely with your conclusion. That is frankly another reason I'm leaving. The connections I've made here around tech (and other hobbies) are largely shallow and unfulfilling. I feel like all my income got eaten up by rent, and bad habits I justified as coping mechanisms. I can save up and use the money to actually build something back home (NC) to help people there in tangible ways. I do hope I find some time to catch a breather at some point so I can dedicate myself to that type of effort completely.
Thanks for sharing your experience and findings. I wish you well and hope you dont dwell on that regret. We all have to learn how wrong we have been sooner or later. I know I have. It's an unfortunate necessity of developing into a better person. Still sucks though.
You have to be the one who moves the conversation from chit-chat about the weather to interesting topics. Sure, it's fine to show up to a dev meeting and chat about your favorite APIs and all, but that won't help you make friends.
The vague process chart I personally use looks like this:
1. Determine if you share common interests with the person (eg, small talk about things you do)
2. Talk at a higher level about a single interest. A good trick is to treat the other person a bit like an expert about that interest - "Oh, what board game would you recommend for X?"
3. Make an offer to hangout in the future. It should be in a situation with multiple people and a public place. You're not trying to invite them to a date, but instead communicate that you're already doing something and want them to join: "Hey, I hang out Tuesdays with some folks at the comicbook shop and play boardgames. You should come join us."
4. If the person finds that agreeable or reciprocates, exchange contact info. I usually just hand them my phone with my contact info on the screen so they can choose their preferred method, but you can also give them a personal card.
Congrats, you've now made a new person you know. Hang out with them, invite them to things. Relationships are like gardens, they require regular tending and maintenance at first but as they get established, they only need occasional check-ins.
Ties into the other article on the front page about mitigating climate change.
It's way too hard to find paid work. If I could earn minimum wage by coding simple, small systems, I would be so happy.
> Ultimately, for me, passing as “normal” means that I am now a fake person, never able to be myself without putting my ability to make a living in jeopardy.
> An issue that was previously “fixed” can suddenly appear to be “broken” again. In fact, nothing has been fixed or broken. We simply have very fluid coping strategies that need to be continuously tweaked and balanced.
Bipolar I here. As an episodic disease, bipolar is extremely susceptible to this passing/masking phenomenon. I have been "stable" for so many years that even close co-workers can't detect anything, and I hardly even notice how much effort I put into "passing". But the effort does tax you and build up over time. This post really hits home for me, and I identify strongly with this kind of play-acting and exhaustion (without claiming to understand, or taking anything away from, the autism spectrum experience).
Moreover, I consistently underestimate the amount of detox and rest that I need to recover from this constant performing. To borrow a line from Rogers & Hammerstein, "whenever I fool the people I act neurotypical for, I fool myself as well". I forget I need to take care of myself.
Thank you Ryan for aggregating & posting!
It's really a struggle to maintain normalcy in the professional world and take care of myself.
Would this mean that the phases of energy that people are using to act normal is actually energy that we really don't need to waste?
People often believe what they see and first impressions are strong. I seem like a perfectly functional hearing person 97% of the time, but the 3% of the time when I can't cover the gap, people tend to react with incredulity because they can't believe I have an actual disability. Some days I just don't want to deal with it because it's exhausting.
I've never really found a good solution to this that doesn't just require patience and persistence from the start. The best approach I've found is to be up-front from the start about my deafness and then to just "lie" about not being able to hear periodically to reinforce the "he's got a hearing problem" memory.
In the past, I used to try to be explicit and say things like "I'm sorry, but the air conditioning or something is droning and I can't hear you well," but that generally derails as people try to explain my own hearing to me with things like "that's so quiet, how it is louder than me" or "if you can hear THAT you should be able to hear me," etc.
But I cannot process, and sometimes not focus on multiple people talking, even when they're not talking through one another. I can tell you a lot generally about their speech, just not what it says. Where they're standing, tone of voice, are they moving, what their intentions are. But if there are 2 conversations in earshot of me I cannot tell you what anybody is saying even if they're shouting to me. If 3 people are standing around and talking I can only participate if I totally ignore one of them and just blindly shut them out, whatever they're saying. Sometimes it gets worse and even with little disturbance I just cannot tell anymore what people are saying to me.
People don't understand. In a 1:1 conversation I'm warm, open, attentive and so on. In a 3 way or more conversation, I'm cold, absent, distracted, annoying (because: very bored) ... Worse, often suddenly, from their perspective, I no longer understand them. I've learned to just hide this, and guess, and find some other excuse to turn the conversation back into a 1:1 conversation.
The kinds and amount of emotional labor that the "invisibly disabled" have to do for the "normal" people in our worlds is sometimes a full-time, completely exhausting, job of its own.
I really got the impression the psychologist was cherrypicking information (especially in the parent interview) just to check things off the diagnostic criteria. Everything he did that vaguely sounded like an ASD symptom was attributed to ASD, with no real thought as to whether it actually is or not. I compared her report to the DSM-5 criteria, I didn't get the impression she was actually applying the criteria properly, just doing her own thing and then invoking its name at the end as if it was some magic spell.
Her diagnostic report claimed our son (who was about to start school) needed all this special education help (timers in school, sensory diet, etc), and she really wanted us to give it to his school. The report sounded like a bad caricature of our son. We decided not to give it to the school and not tell them anything about it. And his teacher tells us he is going very well.
She also put him down in the report as being ASD Level 2, but she told us verbally she only thought he was Level 1, but she always puts people down as Level 2 or above because that's the cut-off for Australian government disability funding ("NDIS List A").
He's mostly normal kid, rather like myself at the same age. He's very intelligent, social stuff isn't his strong suit (but so what, it's never been mine either.) He's very shy, but my wife says she was even worse at his age. We did go through a period last year when his behaviour was becoming rather unmanageable (aggression, defiance, hyperactivity), but he's much much better now (so much so that we took him off his ADHD meds) and I think a lot of those behaviour problems were due to family stresses (new baby), parental mental illness (I have anxiety/depression, and I suspect my wife does too, although she resists diagnosis), sub-optimal parenting skills, rather than ASD and/or ADHD and/or whatever.
When people say that ASD is being overdiagnosed, and I look at what this psychologist did, I think it really is.
Turns out I had Aspergers. So at age 15 I was diagnosed, and then participated in a few brain studies which confirmed it. I stayed off the medication and went through therapy focusing on life skills and human relationship training (how to talk to and interact with huerotyipicals).
Since then my life has been pretty good. It’s had its ups and downs, but a wonderful journey into my 30s.
In my case I was on the spectrum, but the whole experience has made me very skeptical of psychologists. I sometimes think about how many terrible programmers there are. I think the same spread of skills probably exists in every profession. Unfortunately, in psychology if you’re bad at your job, you end up ruining lives.
Like anything else, it’s best to shop around.
I was diagnosed with ADHD three times as a child, my parents never believed it and chose to never tell me or get me the help or medication or accommodation I needed because "I was fine". By god, I'm getting treated now and holy hell life would've been a billion times more enjoyable and productive if they'd just listened, or even told me later so that I could decide. I know you're just trying to do the best you can, but jeez this is sad - if you doubt the diagnosis, fine - get a second opinion, and a third, but think that if they're all the same, you went there for a reason and they're probably right.
> if you doubt the diagnosis, fine - get a second opinion
We actually tried to get a second opinion. We went to another psychologist for one, she booked us in, but then her superiors cancelled it. They said if a child has been diagnosed as having ASD Level 2, they didn't want to repeat the assessment since there was a risk they might get undiagnosed or only diagnosed as Level 1, which would remove his eligibility for government disability funding (NDIS). (Which we still haven't applied for, because we aren't convinced he needs it, and don't know what to spend it on anyway.) They wanted us to go to see some paediatrician they like, who is actually a colleague of our son's existing one.
Instead we took him back to his existing paediatrician. He said he too was a bit sceptical about the diagnosis, but that psychological diagnosis isn't an entirely objective process, and it doesn't really matter whether he has ASD or not, and it would be a waste of time to repeat the assessment, so we should just do nothing about it for 6-12 months, and see how he goes, and consider repeating the assessment in another 2-3 years.
I'd say everything else you just said describes us as well (stress, parental mental illness, etc), but I can't attribute her behavior to those things. That's just how she's always been, and there's nothing wrong with that.
How old is your kid? If they are as high-functioning as you claim, then you should involve them in the decision-making about what to do. ("Do you want me to tell your teachers you have autism?", "Would you like plain food at school?", etc.)
When I was in school, the written "Individual Education Plan" said that I got an extra 30 minutes per hour on tests. In practice, this starts a conversation between the teachers that says, "this student needs special handling for tests". In practice, the accommodation I requested (and usually got) was permission to walk out of a test or exam as soon as I finished (sometimes half an hour early).
We haven't told him about either the ADHD or the ASD diagnosis. We will tell him the full story when he is older (both what he was diagnosed with, and why we are sceptical about the diagnoses.)
Since we haven't told the school about any of his diagnoses, he obviously doesn't get any special consideration for them. But he enjoys school, he reports no problems and neither does his teacher.
This is a good article about the differences: https://www.davidsongifted.org/Search-Database/entry/A10900
That's not to say some kids aren't both. But the rush to diagnose kids, along with the relatively simplistic diagnosis process many psychologists use can lead to misdiagnosis.
Webpage: https://www.autism.org.uk/about/what-is/pda.aspx
Book: https://www.amazon.com/Understanding-Pathological-Avoidance-...
I'd rather have been allowed to fail out of school than grow up a straight-A Addict.
Do I say hi, how do I make small talk. What's the appropriate distance for personal space. I wasn't afraid of people. I was afraid of acting outside of neurotically behavior, and causing an uncomfortable work place.
Now I'm at the other end of the spectrum. I take a very honey badger approach to work. Zero shits given at work. This has made it much easier. Not that I don't deliver work, or half ass it. I just put aside any personal attachment.
I did have the aspie burn out before getting into my own routine. Work as above, but social interaction stimuli. Self discovery is key for anyone on the spectrum. For me things like constantly having earbuds, textile I wear, maintaining light (via sunglasses), etc.
One of my biggest pet peeves is noted in the article. Constantly being told I'm not autistic. Just because I don't appear that way doesn't mean I'm not.
Right now my burnout is a sister symptom of the autism. In so much that it not directly caused. But a resulting effect. Where in I'm constantly moving or switching jobs. Because I don't feel stimulated at work, or challenged. The other big item is I don't do politics. Which can be very detrimental.
I still view being on the spectrum as more of a benefit. But it does require a fair amount of self awareness.
It's viable, you might need to scale down your life-style a bit but I've never been happier.
Programming on things you care about is a lot easier if you have a lot of time.
It seems like the authors never attempted an alternative: pushing back on people's assumptions and being themselves more often. People like and respect Spock and Sherlock Holmes. I get that those are extreme and fictional examples, but you don't have to be extroverted and "normal" to be liked. I'm not saying it'll be perfect, or always easy for you, but there are societal niches which don't mind that some people are weird. More importantly, they can tell that you're altruistic and well-intending, even if you you come off a little poorly socially.
That sort of talent filtering for stupid reasons is very not new - going back at the very least sexist exclusion from fields and Jewish university quota caps (as in maximum number of Jewish scholars) - let alone cases where people with massive potential never had the resources for education.
Pick any other fictional character who is neurotypical and extroverted: the people who want to emulate them are almost certainly a pale comparison. But, those archetypes are popular in culture, and accepted.
Probably happens twice a year during stressful times...
On the upside - I get a lot done! :)
This doesn’t always happen and I’ve found the exact conditions that trigger it to be complex. A huge factor is definitely whether I know everyone in the meeting in advance and feel comfortable with them. This is partly why I choose to stay at a job for years instead of job hopping — once I feel comfortable and stable with coworkers, suddenly I’m not only able to speak coherently in meetings but in fact I can even enjoy running large meetings with no issues.
Honestly I don't think I've experienced burnout from trying to normalize. There are probably a lot of reasons for that... I have a pretty good support system, I enjoy understanding other people, and perhaps I just don't always take it fully seriously.
I have had burnout related to other things. I personally think all people get burnt out if they are stressed out for a long period of time or deal with too many changes at once. That's not something super tied to Autism in my experience. Just tied to being human
I do relate to taking normalization a bit less seriously as I've gotten older. Partly because sometimes the normal thing to do isn't the best option. So perhaps I risk looking a bit weird at the cost of doing what I think is better. Going on my mission helped with that quite a bit I think.
So yeah, kinda mixed feelings. I'm sure some have felt what's described, I personally have not though.
I'm not sure but I'm pretty confident I've experienced a degradation of memory. I combat it with copious note taking and judicious use of a calendar but it does feel unpleasant. I do wonder if it's simply because I do more activities within a single day than I used to in my previous routine of development on a single application one task at a time + social. Now I can have to deal with many tasks for many customers all vying for my attention in parallel.
EDIT: Found great improvement from wearing headphones and sunglasses outdoors though. Helps me avoid too much new information in the morning when my brain is best suited for taking on new information and I have the minimal number of draws on my attention.
There doesn't seem to be intrinsically grinding pain to neurotypical behaviors. I say this because for the past couple months I have fixed the productivity highs and lows into a nice marathon pace. I will see how long this pans out of course.
nowadays im trying to just stick to cannabis and nootropics (namely memantine as nmda antagonism also tends to help me function and maintain the neurotypical façadre) though as they tend to get the job done without putting my body and mind in danger. I have a job interview with wpengine coming up so im hoping that maybe this time I can do it right because I don't really have any other options. im essentially going to lose my place to live at the end of the year so I really need to make sure I figure out a healthy way to maintain if I get the job.
im open to advice if anyone has any suggestions, as ive tried to do this alone my entire adult life, and i just can't seem to figure it out. you give me a formal discipline, something I can quantify and study every aspect of and ill have no problems figuring it out, but when it comes to figuring out how to irl properly i am but an inchoate
Start with finding a healthy way to maintain even if you don't get the job. That will put you in a place where you'll be able to find and retain one.
Part of the problem is that people don't realize that everyone is on the spectrum, autism isn't a binary "property". The other, bigger, part of the problem is that there seems to be a negative stereotypical view of people with mental illnesses or just people who aren't "normal". Unfortunately autistic people fall towards that category in the current social context.
Wait, so autistic burnout is just regular burnout, but from general social interactions? I get that we're all on this autistic spectrum[0], but I think we all just get burnt out from time to time when dealing with jerks and other people in general. Is it just that autistic people get more tired from the standard social guessing game? If this is a spectrum, then where is the cut-off? Is it all self-diagnosis then?
Also, what is stimming?
Sorry for all the questions. Feel free to answer any/none of them. Thanks for the answers thus far!
[0] Also, how is the spectrum any different than just the normal range of being a human? It sounds like we've just got a new word for another normally distributed human thing, like height or hearing ranges.
This by the way, is why I made the decision to “come out of the closet” and damn the consequences because for me personally, I am just done trying. It’s been a freeing experience and has given me energy I never thought I would have. The skills I’ve learned from “masking and passing” are still there and are definitely still relevant and helpful, but I just don’t put as much effort into it as I used to.
I really think that more ASD people need to come out of the closet too. We need to start demanding that the world understands us and meets us halfway. So far it’s been a one way street, and that’s just not viable long term.
Nowadays if a child is fidgety and energetic people (teachers, psychiatrists etc) want to get them tested for ADHD and put them on ritalin to fix the 'problem', whereas previously we'd just view it as a quirk and make sure that kid had some time to tire themselves out.
I'm not sure why we're less tolerant now, my guess is an overworked education system and teachers (in the UK anyway). It's harder to just ignore quirks when you've massive class sizes.
For people with mental illness, there is a tremendous amount of pressure to hide their symptoms and appear "normal" in public. It's almost a prerequisite to be able to hold down a job or even go out in public without being ostracized. The original article refers to this as "masking".
What happens is as the underlying condition worsens, the victim simply expends more and more energy into hiding those symptoms. To outsiders, there is no perceptible change to the victim's behavior or condition. When the victim finally reaches the point of exhaustion, the collapse appears to come out of nowhere, or even to be faked.
Basically, the public expects to see a set of symptoms that are steady, or increase gradually over time. What you see in practice looks like normal, healthy behavior for months or years at a time, punctuated by dramatic breakdowns. (Or, in an effort to mask to the very end, the victim may abruptly disappear into hiding with or without notice until their symptoms are manageable again.)
If there's a TLDR for this, it's that, from the outside, mental illness looks very different from what you've been conditioned to expect, and it's not surprising that you interpret it as a form of hypochondria.
Blaming moms for autistic kids is how it used to be done. It did not helped kids nor moms. Kids and moms being silent and accepting blame did nothing to solve their problems.
Why would someone "raising victim flag" bothered you?
By percentage, of the people out there claiming ASD? Negligible. It's not a fun diagnosis. Nobody's going to play it up for fun. They'll pick something easier to fake and more rewarding, like cancer or allergies, maybe autoimmune.
Standard line treatment for ASD is "Good luck, I hope your life goes okay, I'm here if you want to talk about it".
In DSM-5, the diagnostic manual published by the American Psychiatric Association in 2013, this disorder is listed under 300.19 Factitious disorder. This, in turn, encompasses two types: Factitious disorder imposed on self – (formerly Munchausen syndrome). Factitious disorder imposed on another – (formerly Munchausen syndrome by proxy); diagnosis assigned to the perpetrator; the victim may be assigned an abuse diagnosis (e.g. child abuse).
When your neighbors get laid off it is because they are lazy bums. When you get laid off it is a recession or mismanagement. It is easy to understand why it is so common - it is so much easier emotionally to pretend the world is just except when it would imply you are at fault.
