Melt Downs and Shut Downs, oh my!
An intense response to overwhelming sensory stimulation, explained.
Before I knew that I was quite different, I had melt downs and shut downs. The earliest ones that I can remember were in primary school. But first, a bit of definition.
For me, a meltdown is an intense response to overwhelming sensory stimulation. That's what it is - yet the words don't quite convey the intensity level of the feelings (I’m non-verbal, remember). Don't think in terms of scales from 1 - 10, they're so powerful that they should be measured in joules. They happen when I become completely overwhelmed by the current situation and temporarily lose control. Melt downs, when not managed correctly, trigger a fight / flight response. For me, it's mostly flight. For others, it's a fight (which has serious implications when autistic people melt-down and the police are called). But, when a human has a flight / fight response, other biological things happen.
From the textbooks on the typical human nervous system: the sympathetic nervous system (SNS) controls the body's responses to a perceived threat and is responsible for the "fight or flight" response. When it's in control, it shuts down the parasympathetic nervous system (PNS), which controls homeostasis. When the body is at rest, the PNS is responsible for the body's "rest and digest" function.
I can safely say that the first 30 or so years were spent almost entirely under the control of my body's SNS. There have been some significant health implications as a result. It wasn't until after 35, or so, that I became aware of my issues and began to manage them better. The period of my 20’s was a s—t show, mostly numbed by psychopharmacology (see the rest of the articles this week for more on that). My choice to retire early was due, in no small part, to the need to manage this issue better and restore myself to proper health. More on this in a bit.
What I now know is that I am a hyper-empath, largely due to alexithymia’s presences in my complex autistic system. I also have sensory issues. This means that energy, sounds, light, smells, and the whole world of my six senses bombard me constantly (again, this input should be measured in joules). Because of my wiring, they all feel, look, sound at the same strength. This can be quite overwhelming. When overwhelmed, I want to retreat or run.
Two rather powerful events happened when in primary school. I can remember quite vividly, and relive in my night terrors, an episode of abuse that was rather long in duration. The next day at school was quite overwhelming as well. There was no rest or retreat in between. The school bus was a nightmare of sensory overload, so I could not get myself on the bus to go home. I started wandering in a direction that seemed correct. It wasn't.
Autistic people, children and adults, often wander off in response to being overwhelmed. They, we, I, tend to retreat in the opposite direction of the perceived threat. In this case, a schoolmate saw me walking down the street and invited my to his house. I didn't really accept or reject the offer, I just went along. I remember playing with his cars in his back yard - quiet and peaceful. I was calming down in a way that I knew how to do, playing with cars in a back yard.
Hours later, the kid's mom wondered why I was still there. She got a hold of my parental units, who were absolutely beside themselves with anger over the fact that I had missed the bus. They were combing the neighborhood, and around the school. The call from my classmate's mom brought them some relief. But for me, not so much. I got quite the ass whooping when I got home - to the shock and awe of all of those assembled.
To my young autistic brain, this episode cemented a divide between the concepts of home and safety. That my abuser was next door complicated this issue further.
As I entered high school, I gained permission to ride my bike farther and farther away from home. I engaged in sports. This is how I "ran." This is how I fought the urge to run. I was in such good shape from all the running, training, biking. Sports was an acceptable excuse to not be home. I even snuck away after practicing with the varsity basketball squad, biking to the local community college to wrestle a a Greco club. No one knew what I was up to. I didn't want to be home. I didn't want to sleep - the night terrors. The only way I could sleep is collapsing from exhaustion. The more I trained, the more I needed to train to make this happen.
One summer, I rode my bike over 20 miles to play in the Converse All Star league. The league was held at a college (bigger court). I rode there, played for hours, then rode back. Again, I was in amazing shape. Not because I wanted to be. I had to do something to channel the energy away from simply running away and getting an ass whooping.
In college, I had access to vehicles. This made running more complicated. I could go quite far. I also hadn't quite worked out finances or fuel economy.
Being at college, being non-verbal but not knowing what that was or what that meant, and having really no business being on my own equals a recipe for disaster. That disaster would come in the form of an epic melt-down - and my first shut down. Shut downs are at the extreme end of the spectrum of melt-downs. Think alcoholic black-out, then magnify the terror by 100, measure in joules, and you'll get close.
I was dating a girl and we were quite serious. We were living in Germany. In hindsight, there had been a few warning signs of overload on the road from Santa Rosa to Germany. But, I had no way of knowing what was quite going on or what to do about it. Plus, I was still dealing with the effects of not really being able to properly care for myself. I wasn't sure where one ended wave of panic ended and the other issues began.
I have vague recollections of going to work one day in Germany, then having tea with an airport copper in London's Heathrow airport - about a day and a half later. How I got to the airport, how I got the money to book a flight from Frankfurt to London, what was in my rucksack when I arrived seemed amusing to the copper. Not so for me. I was in a manic panic. Nothing made sense. My girlfriend was terrified - car gone, odd assortment of things gone, I'm gone ... then a confused call from the Met via the Polizei, then a call from the MPs (we were working for the US Army - she still does). That episode was the beginning of the end of my time in Germany. I had to make it right with my employer, with the State, and with my friends. Then, I had to leave the country. Executive Functioning is a skill not very well employed by autistic people, myself included. These skills are entirely lacking when in panic mode.
Still not knowing what was happening, or why, the doctors focussed on the "low-hanging fruit," a childhood full of abuse and abandonment. They diagnosed all sorts of conditions. They prescribed all sorts of drugs. None of them worked It got progressively worse. They didn’t know why. I now know why. But then, all I could do was go along with their advice. After all, they are the experts … aren’t they
A few years later, the cumulative affects of the regime overwhelmed me into another shut down. This time, my room mates called 911. I wasn't making sense. I wasn't responding normally. This time, I was admitted to the hospital and would spend 33 days confounding Kaiser's best doctors. I wasn't discharged because they had fixed what was “wrong.” I was discharged because I ran out of benefits. I was given a bunch more medication and was shown the door. I was back in for a short stay not too long after.
All of this before people or doctors knew about autistic melt-downs or shut-downs. It's not always fun being at the leading edge of something.
You now know some of my deepest secrets. A few people know of these episodes from a superficial point of view. Fewer still know all of the details. I'm letting you see a glimpse of these experiences in order to help you understand just how serious melt downs and shut downs can be. I hope that you'll realize that my mentioning of a measurement scale in joules is not an attempt at sarcasm, but an attempt to convey the depth of energy associated with the events - melt-downs / shut-downs.
Now that I a lot older, I can control my environment to a greater extent. As such, I can control the amount of stimulus I'm subjected to each day, and control the timing and duration of my very necessary calm down times. Indeed, as noted previously, it was entirely necessary to retire from forensic science a bit early. Being a vital part of a small specialized unit meant that I was regularly on-call. Plus, once at work, there was no guarantee that I'd be home to rest on a regular schedule. To complicate matters further, for the last 7 years of my career, I slept in my office 3 or 4 nights per week. On average, I worked 18 hours / day. I calculated that I worked 33 years worth of 8 hour days in the about 15 years I spent there. The medicine necessary to maintain that lifestyle was literally killing me. If you see pictures of me on social media, you might have noticed my drastic weight loss since retirement. I've mentioned getting my health in order. Now you know the rest of the story.
Having learned all of this, it may help fill in some gaps in a wide variety of areas. People often struggle to define me, if they even try. When people see me - my body as presented in public - they see an older "white man, light eyes, short hair, very tall, and etc." I'm usually masking when in public - "have a smile for everyone you meet ..." The mask, combined with my physical appearance, leads people to form opinions about me that may be informed by eugenics classifications such as race and gender, then blending those together with Intersectionality to lead them to the conclusion that where I am today is entirely the result of "white privilege." I reject eugenics entirely. I generally reject Intersectionality as coming from a eugenic starting point There’s a way of handling the intersecting identities that doesn’t involve eugenics, but that’s for later. Now that you've read this far into the article, one can hardly make the point that being violently / sexually abused for a majority of one's upbringing is "privileged." Yet, people form their stereotypes largely from ignorance. Part of my writing in this space is to inform the wider discussion on self-ownership. This week’s topics should all be seen in that light - how to take yourself back and live a free and authentic life.
Yes, self-ownership (anarchy) is a huge issue for me. It's why even though I’m an elected official, I’m not a partisan and I don’t seek the limelight. I don't like mobs of people, and I don't like others being in control of my life. Self-ownership is how I am healing myself, taking care of myself, and forging a healthy path forward. Self-ownership is how I am managing my sensory world so that melt-downs happen less and less frequently - and shut downs (hopefully) never happen again.
As regards groups and meetings, yes, I want to be invited to participate in things. No, I might not always attend. I have no way of knowing, so far in the future, how I will be feeling on that day. I don't want to hurt people's feelings by not showing up. Thus, I tend to decline more invitations than I accept. If I have committed to attending an event of yours, and I didn't show up, please forgive me. Self-care is so important these days - at this stage of my life.
Thank you for reading. I hope that it all made sense. Remember, I'm not naturally verbal. So this is perhaps the best translation of these rather painful events that I can manage at the moment. But, I wanted to give an authentic telling of what this important topic means - really means. So many places on-line skim over this topic - telling adults that a melt-down is different than a tantrum, and etc. Seldom will you find the topic told in the first person - like I've attempted here. Feel free to drop me a comment if you'd like clarification on anything herein.
Don’t forget to subscribe to the AutSide. Your support means so much to me. The rest of this week’s articles help explain how I was able to get control of things, and start living as my authentic autistic self. I hope that you enjoy them.