For those who don’t know me, I’m autistic. I’ve been a developer for north of two decades now.
I didn’t find out I was ASD until 19, and didn’t reconcile with that until years later. These posts will be a combination of advice I’ve given to those who are like me, as well as a letter of sorts to my past self who could have used a lot of it.
I write these posts in the hopes that someone like me will find value in knowing a very simple and very important truth about ASD:
You are not alone, and you are loved.
Trigger Warning
I will lead with a warning: This post will make folks with autism uncomfortable, because what I’m about to describe is one of the darkest places you can be, and that may be triggering. If you are not in a good place this may not be the post to read in this moment, but perhaps in reading it you might find that you’re not alone in that experience, and there are ways to handle it.
It is not a particularly easy post for me to write either, as it requires me to relive the experiences in my head that are perhaps some of the most painful and terrifying in my life. I do this in hopes that those who are like me gain insight from it.
Panic
There is a failure mode for those of us with autism, often called a meltdown, in which we systemically short circuit and go into a mode of sheer panic and terror. For the duration of that episode it can feel like our entire body is imploding on itself and all you can think to do is hide and scream.
Your heartrate skyrockets like it wants to explode out of your chest, your breathing gets tight and shallow almost at the level of a gasp, you’re both sweating and freezing and boiling alive, your gut feels like a black hole that’s about to rip a hole in your middle, and your entire body is fully in panic mode.
The only thing you want in this moment is to disappear, to huddle in on yourself, to scream and cry out, anything just to make it stop.
It is not funny, it is not cute, it is a visceral response where your entire body goes into flight mode but the only thing you can do is turtle. In that moment, to you, the world is ending and everything feels like pain.
In those moments some will find themselves willing to do anything just to make it stop, and that can lead us to very dark places and suicidal ideation very quickly. I would be a liar if I said that I had not been in that place, but if you take nothing else from this post please please realize that this too will pass, and that there are ways to manage this.
You are loved and you are valued, and if you reach that point you are not alone, please reach out to the 988 Suicide & Crisis Lifeline and talk to someone, anyone, because losing even a single life is a tragedy which can never be undone.
Stages of Panic
As I have gotten older I’ve realized that an ounce of prevention is worth its weight in gold to ensure I do not get to this point. Part of that means recognizing the signs that an attack is happening, and dealing with each one as soon as humanly possible.
The progression here is often times close to the stages of panic I find myself in, and at each stage I have an off ramp unless it’s especially bad and my body decides to skip a few and get right to the end scenarios.
The First Stage: My Gut
The first stage I find is whenever my gut starts to feel like a black hole in my center. That sinking feeling that I’m going to be deeply sick.
If I ignore it I will be visibly sick. If I eat anything I will also end up sick. Really almost any strong sensory trigger around a time like this will very likely spiral me into a full attack, but that carries over into another stage.
The most effective way I have learned to deal with this stage is to skip eating for a while, remove myself from a situation, try and find some ginger or herbal tea (NO CAFFEINE), and a quiet corner. I’ll grab a pair of headphones, put on some softer music, and just completely stop for the next half hour or so.
Sometimes anti-acids help, but some ironically make it worse and do induce sickness from whatever gut conditions people like us might have.
What doesn’t help is eating, any amount of caffeine, trying to ignore it and pushing through, or trying to tell myself that a 5-minute breather will have me right back to it.
The Second Stage: My Head
The second is my head, or rather my neck. If I start to feel a pull in the back right of my neck at the base of my skull I have about 30 minutes before a full migraine will have me across the line into another attack.
I do not mess with this one anymore, I feel any tension starting to build there especially if I’m stressed I will full stop and find a bottle of Excedrin in my bag. If I’m late on this I will be laid out on my bed with an ice pack praying for release, and all the other fun stages start coming with it.
The most effective ways I’ve learned to deal with this are around drinking very little to no alcohol, getting appropriate amounts of sleep, checking my posture, and reminding myself to step back from situations as if I’m observing myself from the outside to recenter.
Skipping medication in this moment is a guaranteed route to misery for me. Some of this is a hereditary migraine curse I’ll have until I’m 50, but I find that very frequently panic triggers will launch migraines along with them just out of spite, so I include it here.
The Third Stage: My Heart
I’m in decent shape, I used to be a D2 college cross runner at one point, so my heart rate tends to be below 60 in most cases. If that number starts spiking into the 100s or above something is seriously wrong and my body is warning me to knock it off.
Similar to my gut, and often times comorbidly, the same fixes tend to help a lot here.
The single biggest thing for me here is that I cannot have any type of stimulant when this is happening unless I want to spike it worse and launch myself into an attack. That means coffee, a lot of teas, sodas, any of it? Very bad idea.
The Fourth Stage: Crushing Weight
This one is a bit more abstract, but if you ask an autistic person they’ll know the feeling of a crushing weight bearing down on them, frequently in tandem with all of the above stages.
Once it reaches this stage there’s very little that can be done to avoid a full attack other than ride it out and find a place to hide.
I’ve had some success with weighted blankets, dark rooms, screaming into pillows or anything noise absorbent, loud music, or in general full isolation from the world.
This is often the point of no return, and very rarely have I been able to stave something off if it gets here.
The Fifth and Final Stage: Catastrophe
If I ignore these long enough, or do not deal with them and isolate myself, I find myself at the gate to a full attack, catastrophe. Take everything above and add to it a sense of suffocating dread like the world is collapsing around you and if you do not escape this instant it will swallow you whole.
This is the worst stage, and thankfully an exceptionally rare one, but if I get here the only thing that I have ever had work for me is near-complete isolation as soon as possible and repeating to myself “this too shall pass” until I start to finally believe it. That can take potentially half an hour to several hours to regain control here.
It’s also the most dangerous to where some would do anything to remove themselves from this equation, and again, please don’t do that. I’ve been there, I get it, I know how that feels but remember please that this too shall pass.
For me if I get here I immediately reach out to those I trust and say that I am not ok and I need help immediately, and preferably to check in on me for a week or two afterwards to make sure I’m recovering well.
Living this Life
As I get older the frequency with which this happens is exceptionally rare and something significant has to happen to get me across that line. I’ve only had one full-blown attack back in late March and early April this year to where I hit stage five, and I was in an extremely dark place at that point. Thankfully I had a group of folks who cared enough to help me through it, but it’s a place I do not ever want to be in.
Once the stages start there’s very little I can do to offboard from that runaway train, but there’s a lot I can do before it gets to that point to make sure I never step foot on it in the first place. My life is a series of mechanisms to do just that.
Impartial Observer
The irony of autism is we are not emotionless, far be it, we’re actually excessively emotional and vulnerable to strong resonance with those around us. It’s one reason why I just cannot watch reality TV or dramas as it simulates those above stages.
The way I have learned to deal with this is to remove myself from the equation by imagining myself observing my actions, as an impartial observer, and removing as much emotion from the situation as I can to ask whether or not this incident is really important or not. It’s a variant on the irony that I know how I would coach someone else going through these situations, but I cannot do it for myself, so I find a way to do so for myself by wrapping everything I am into a small ball and watching it from the outside.
This takes a lot of practice, and while you’re working on it you’ll find that very frequently strong emotions will pierce the veil here and panic will creep in with them. Separate yourself from them, observe them, name them, recognize them, and then let them continue on their way.
I’m not saying to do this 100% of the time, emotions make us human, but sometimes I have to flip this switch to become who I need to be in a moment to lead. The other fault here is that it doesn’t go away, it comes back with interest, and I’m going to be paying back that debt whenever I get home so at best it’s a reprieve if I have no escape route.
Sobriety
All things told I do not consume any vast amount of substances, though in my 20s I did drink a fair amount. As I get older I tend to limit myself to one, maybe two drinks, on social occasions and otherwise I’ll likely skip and go for something non-alcoholic.
Everything I drink ends up making the medication that can kill a stage-two panic in its tracks dangerous.
Combine that with a general rule I keep to never drink whenever I’m in a bad place for any reason.
Rest
If I forget to sleep and get under ~6-7 hours a night I’m going to regret it. It effectively raises the floor level of panic I operate at making it far far easier for me to cross a few lines and need to immediately retreat. I have literal alarms telling me to go to bed to prevent this, and every time I ignore it I end up regretting it afterwards.
If I allow this trend to go on for more than a week at a time I’ll be operating at stage-one at a minimum until I’ve recovered at least a few weeks and my body will go into full shutdown mode around stage-two until I finally stop.
Eating
I forget to eat, I just don’t get hungry, so like rest I also have an alarm to remind me to eat. Even if I’m not hungry I try and maintain a minimum, but if I allow myself to get too busy and skip meals I’ll regret it just as much as skipping sleep.
Understanding
Catastrophizing is a stage for a reason, so if I notice myself doing that with people I take a hard step backwards and ask myself whether or not what I’m starting to fret over is actually an issue. I try and understand from the other’s perspective what’s going on here before going to any more extreme measures, and often times I find that I was attributing malice to what has a pretty reasonable explanation.
With maturity I can find these reasons far more quickly and short-circuit most of this entire process, but sometimes we run hot and logic goes out a window with it, which brings me to…
Stepping Away
You may not like it, but some situations you just need to step away from whether it be jobs, people, activities, or otherwise. Take care of yourself first, and if something is repeatedly triggering you to panic it may be time to step away and ask yourself why that is.
You do not owe others your health and mental well being, and if they take issue with that? Well quite frankly screw them, they’re not worth your time.
What This Means for Work
There are times you can’t just step away, and work is one of those situations which will always find a new and novel way to launch you into a crisis. Mind I would still argue stepping away is an option here if it gets bad enough.
Even in jobs I’ve enjoyed I’ve had a few incidents which have happened to where I needed to step away. If a job ever gets me over a rate of 2-3 incidents a year I’m gone, and I’ve had that happen a few times and I have left those jobs afterwards.
The thing to remember though is that these are exceptionally rare situations for me, rather than a daily struggle, and I have enough mechanisms in place to prevent a vast majority of situations. I’m not writing this as some sort of “Guide to Me”, but as a resource for others who have asked how I deal with these situations who may not have their own mechanisms developed.
So what does it mean for work? For me, rarely if anything nowadays. I know how to handle myself even if I don’t particularly like parts of that.
The Aftermath
The most annoying part is even after things have passed they haven’t really passed yet. Often times it takes me a few days to a week depending on how bad the incident was to fully recover. I’m also likely very vulnerable to relapsing as the floor for panic is going to be at a much higher level during that time.
Even if I’m not visibly in a panic I’m still recovering, but I do have a group of good folks around me that support me through these times that I rely on, and in turn I try and be there for them when they find themselves in similar situations. End of the day we take care of each other and no one person is alone.
There’s no shame in needing help, in fact quite the opposite, it shows a lot of bravery that you know that you cannot solve this alone any more and you need help. I won’t lie to you and say it’s not embarrassing or you won’t feel ashamed every time it happens like you’ve failed and lost control again, but you don’t have to do it alone.
For the People Around Us
Perhaps you’re not the one in this story, perhaps you know someone else going through this and you just want to help them. We appreciate it, we really do, but there are things to keep in mind.
The most important of which is if we’re turtling we need space and understanding rather than solutions. That means go easy on touching, give us some space, don’t try and get us to explain things because we can’t even if we wanted to, and please believe us when we say we need time. It’s not the time to tell us to calm down, we know, and trust me we’d like to but frankly we can’t.
In the aftermath though? Check in on us, see how we’re doing, ask what you can do to help more next time when we’re back to a semi-sane state of mind. I at least appreciate those who care and check in, and I try and do the same with people in my life in similar situations.
On Medication
I take Excedrin for the migraines and sometimes alka-seltzer for my stomach, but otherwise I have not really taken medication for this. It’s rare enough that you never think you need it until an episode hits and you’re looking for anything to hold onto to weather the storm. While writing this the thought did cross my mind that I should probably explore medication more to help me deal with this more effectively.
I don’t consider medication a weakness, no, but I do consider doctors and healthcare as an autistic person to be its own form of trauma so working up the willpower to call in and even get something scheduled is quite a step for me. Thankfully in SF and other large metro areas services like OneMedical and ZocDoc exist or I’d likely be in much worse shape here. The ability to have something scheduled without having to navigate a byzantine phone maze and scheduling system is a godsend for folks like us, and honestly I’m proud to have worked for one of them for that very reason.
Perhaps ironically I ended up at One Medical for two years because when I was having a full blown panic episode at my previous role I found them as an option to get the help I needed, and I will always be grateful for that experience.
Wrapping Up
If you get nothing else out of this post realize this: You are not alone, and you are loved.
We survive together, we learn, and we grow from who we were yesterday. I sure haven’t entirely figured myself out, and you probably haven’t either, but every day we get better at it which is all anyone can ask of us.
Take care of yourselves out there.