Autistic Burnout: The Cost of Masking and Passing (2017)

I definitely identify with that, so very hard.

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...

This is way too real. Attempting to milk the high functioning part of your brain just to run away and hide forever and hopefully coast on the achieved results post-burnout is a cycle I didn't realise I was even doing.

Heh, but isn't that almost everyone these days? And even normal people get a burnout when they have to run an internal virtual machine to conform to quickly changing society/rules they don't believe to maintain their status, and need a downtime to recover.

Why do you think that this only applies to autistic people? That's exactly how a lot of non-autistic people feel/behave/strategize as well.

This echoes so much to me. I'm working to start a company so I get paid enough to be able to take a vacation.

I feel like if I ever do get to that point. I would just spend the free time recuperating.

Is this really all that unique to autistic people though? Everyone is stuck in the rat-race.

Yes, and it never works. People don't remember what you did before, so the social and functional capital you've so carefully accumulated becomes worthless as soon as you need to cash in from some bump in the road :(

It sounds a lot like a substance abuser's mindset as well.

Yeah, this honestly fits an ongoing life pattern with me.

Also from the Seattle area and this hits home as well, except I am a bit agoraphobic and need to build up courage to go out.

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've been unemployed for two years after graduating, plus a short tense stint at a fast food place. It's hard to write any software. All I do is read HN and about technologies without actually doing anything. Have had several medical professionals "really think" I am autistic, but none were qualified to diagnose.

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.

Where (or to what kind of area) are you moving? Will you drive?

me too on both the diagnosis and "I forget I need to take care of myself."

It's really a struggle to maintain normalcy in the professional world and take care of myself.

I've always wondered if everyone is just acting to pass as neurotypical, when everyone is really just acting. And maybe there could be some way that everyone could just be real with each other and realize that no one is actually truly neurotypical. How do we tell if anyone is really neurotypical? And what would it look like if everyone was actually neurotypical?

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?

I'm not even sure what I've got. I can hear very well. With enough focus I can follow people and animals around at pretty sizeable distances. I practice that. Or perhaps I should say I enjoy doing that, in the dark in the small pieces of forest that still remain where I live. I can easily follow a conversation from 30 meters distance, with sufficient focus.

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.

> I've never really found a good solution to this that doesn't just require patience and persistence from the start.

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 think a lot of psychologists really have no clue. I was diagnosed with bi-polar II when I was 10, then major depressive disorder, then adhd, the oppositional defiance disorder. I was put on so many different medications which fucked me up and stole my adolescents from me. I ended up a ward of the state and cycled through more than a few mental institutions in my teens. Then I met someone who was like “I think this kids previous shrinks fucked up. I’m taking him off all the medication and then I’m going to observe him and find a diagnosis.”

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.

No, of course it's completely logical generalise the whole field of psychology and the diagnosis and treatment of complex mental disorders from the singular experience you had - especially when they've told you they're trying to get you the most help they can from various government bureaucracies. It's also perfectly logical to just take a face value your child's teacher's opinion that "they're fine" when they've got 20+ other children to worry about and monitor. Don't worry, you're the parent and you always know best - and you're sure to tell other people too. /s

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.

My 5-year-old daughter was just diagnosed with ASD. I was beyond skeptical through the entire process -- until I started seeing what they were seeing. If you go back and watch videos of her when she was younger you see it then, too. She's an incredible kid, intelligent, curious, goofy. I am still not sure I've really accepted it, but the help she's getting is really helping her. Unless you're a psychologist I don't think you should be "convinced". Get a second opinion if you don't believe it. Don't let your pride get in the way of teaching your son the _healthy_ coping mechanisms he might need.

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.

I am an adult who was diagnosed with Asperger's in 5th grade.

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).

What's important is to remain open to the possibility, because if you're wrong, your child is in for a world of hurt. I did very well in school, was a model student, and continued to do so until I was so exhausted by high school that I just stopped trying. I had no idea I was autistic, so I couldn't explain what was going on when I started missing classes to be alone, and going from a straight a student to doing only what was necessary to reach a c+.

One thing that's maybe worth looking into is gifted children, overexcitabilities and asynchronous development. It very common to misdiagnose young gifted children with ADHD, Aspergers and other behavioural disorders. This is because at a young age the symptoms are very similar and it generally requires a more indepth interview with the child to tell the differences.

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.

You may want to look into Pathological Demand Avoidance. It's very new, and has basically no awareness outside of the UK, but it seems to describe a class of people (including myself), who exhibit symptoms similar to people who are classically autistic or have aspergers, but with much better social skills.

Webpage: https://www.autism.org.uk/about/what-is/pda.aspx

Book: https://www.amazon.com/Understanding-Pathological-Avoidance-...

I never recovered from the addictive ADHD medication I was put on as a child.

I'd rather have been allowed to fail out of school than grow up a straight-A Addict.

DSM is a US standard, does Australia have a different standard?

From the psychologist's perspective, it seems like she might actually think she was doing you a favor because of the disability funding...

Not doing politics is not a mental disorder it's being noble.

I'm going to push back a bit on this. People like Spock and Sherlock only because they are incredibly capable. That is, it's entirely predicated on their instrumental value, not because of their personality. If they weren't as capable, people wouldn't hesitate to kick them to the curb and never interact with them.

This happens to me as well. I sometimes avoid speaking in meetings because the act of drawing the attention of the whole room on me tends to compromise my ability to think and speak clearly. So I can start with a completely coherent set of points I want to make, but when I start actually talking I can no longer “remember” them, which in the worst case could make me seem incompetent. I use quotes because I don’t believe it’s a legitimate lapse of memory so much as it is a sort of social overload that shuts part of me down.

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.

My problem, in general, is that I run just below redline normally. So any extra stressors and I'm kaput for a week.

"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"

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.

Autistic burnout is partially a result of pretending to be "normal" around other people (those who don't understand and judge autistic behaviour like stimming). "Normal" people can also experience this burnout if they're also pretending to be someone they are not (day in, day out).

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.

For ASD Individuals “Masking and Passing” is the primary mode of trying to “make it” in the world. It means we try to fake being normal as much as possible so folks see us and treat us as normal. This requires constant concsious thought as to our actions, our intuition and our judgement of other people and their emptional state, because we are absolutely terrible at reading other people. As an example, most people can tell the difference between if someone is excited or angry. I cannot. Anger and excitement look very similar to me. Similarly tiredness and extreme sadness looks very similar to me. So I have to constantly evaluate given other contextual clues what mental state the other person is in. This is an ongoing and very conscious process using logic and deduction. Nuerotypicals do not have to do this. You might get confused from time to time as a neurotyoical and ask someone “What’s wrong” to clarify but for us, it is a constant state of confusion. It gets fucking tiring. We spend our entire lives trying to conform to the world around us, while we are lost 90% of the time.

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.

They can no longer pass as a nuerotypical while they are burnt out, which I'm guessing can make things more difficult.

I read a really good blog the other day which I can't find any more. Its gist was that society, but particularly schools, are a lot less tolerant of 'quirks' than they used to be.

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.

I'm reminded of how some people complain that there are a lot more queer people around and claim that they are somehow "fake" or "going through a phase", when all that's happened is that visible signs are no longer quite so violently suppressed. Or dead of AIDS.

Perhaps modern life allows the issues to be explored honestly and openly, and that makes you uncomfortable.

Somebody with a psych background would probably inform you that autism spectrum disorder is a real mental disorder, and not people raising the victim flag.

I think I understand why you feel that way.

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.

I think that it is ok to talk openly about difficulties and challenges one faces. Talking and analyzing helps with dealing with shit. It is uncomfortable to hear about difficulties of other people, but imo, adults should be able to cope what that.

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?

Sure, people are playing Munchausen's by proxy with kids to get special treatment, and so are adults.

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".

That sounds like a very common empathy gap in the form of "it isn't a real problem until it affects me".

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.