There’s so much I want to share about what I’ve learned that’s affirmative, but a lot of coaching conversations online start when people feel isolated, helpless and adrift. Burnout, specifically an Autistic Burnout or Meltdown, is what generally describes the conditions when someone with autism can no longer mask their autism, can no longer participate in the status quo. With 1 in 36 children currently identified as having autism*, the urgency to address coping strategies for kids is now. For adults with autism, it’s likely such coping strategies were never learned, needs never addressed, and all the data in the world about how not-alone you are in having autism, or even burning out, doesn’t change that we all need help getting out of our own head, and sometimes getting out of our own way.
Burning out from Burnouts
I haven’t gone through and fully identified all the burnouts I’ve experienced over my lifetime. That said, in the last fifteen years I experienced three distinct burnouts as an adult that compounded until the pandemic in 2020. Life slowed down enough for me to acknowledge feedback that a few things were happening:
- My fight-or-flight instincts were on overdrive — I could *only* frame things I was confused about as threatening.
- I “lost” my ability to advocate for my needs — I could speak, but “what” I was saying were fragments, out of the long streams of inner-monologue, colored by all sorts of unresolved arguments, fights and other trauma over a *lifetime*.
- The behaviors/methods/processes I hardened to participate and be present at work, let alone at home, became insufficient at best, and often as an obstacle to the changes necessitated by a new way of living and working forced by the pandemic response.
June 2009
The first autistic meltdown I can point to happened a year after my youngest, Norrin, was born. The morning after their birth, I had a final interview for an internal promotion that no one would reschedule. That morning when I was already en route to the office, I was told we could do this interview “at any time” and was encouraged to push back the interview to an unspecified date. Not twelve hours after the interview, a candidate without my eLearning and instructional bona fides got the promotion.
The whole of the next year was me trying not to go against the grain, but without a leader/manager who understood what and how I could best contribute value to the team, I felt increasingly on my own in consulting internally to business stakeholders.
The meltdown manifested in an interaction with a Director — an internal customer for me as an internal consultant. We talked about Yammer, which at the time I’d just helped launch in the organization, and he (once again) came up with plainly false platitudes about why he was pushing off trying it.
I couldn’t take the lie, as innocuous as it was. I scolded him in much the same way I was scolded by my dad as a kid for lying. Hours later, my new manager sat me down and reprimanded me, asking me if that’s how I talk to my kids, who were very very small. It got me thinking… “is that how I talk to my kids?”
That served as a wake-up call that I needed help, which was the first time I sought a psychologist, and worked with her using Cognitive Behavior Therapy (CBT) techniques.
CBT was useful as long as my home life was stable and consistent, because it acted as a sort of “training” my emotional responses for the conditions I’m likely to encounter. A year later, I went from working a regular job in an office to being a fully distributed worker contracting for the US Government… and all that consistency was gone, requiring new day-to-day behaviors and coping strategies… which were helpful while the job was predictable.
March 2014
By 2013, being an open standards community manager for the US Department of Defense required more juggling of issues, navigating tough external and internal politics, than I had a handle on. Being among the very first to manage open source international community for US Government, let alone US Department of Defense, carried a lot of professional risk. In simply trying to advocate on behalf of community and industry with leadership, doing that job well required asking tough questions where the power imbalance is so great, I could simply be fired for asking a question someone didn’t like. I knew of people that had happened to while I was in that role. There were at least three times that year alone that almost happened to me.
By 2014, I left my role contracting for US Government, made a huge move to New York for a new job/new career. Unfortunately, the company was already going under when I took the role and six weeks (yes, weeks) after making major life changes moving from Chicago to NYC, I was laid off. It forced my hand to consulting full-time at a point in time I wasn’t ready for. Six months later, all the unresolved messes I accumulated could no longer be kicked forward — I went into a full depression.
I couldn’t see a way forward; which frightened the hell out of me. I’d try to sleep but while awake, I’d see a creeping and foreboding black hole. I mistook an argument as a break-up and was unable to hear any words of comfort or reason to change my thinking. I became inflexible on my worst takes.
I simply could-not. I shut down. I could not move to another town. I could not stay in NYC. I knew there was no “going back home” bc I no longer even knew where home for me was. A lifetime of moving to new towns, building wholly new support networks and support systems, on a near-consistent cadence of every three years… I could not find another Ctrl-N* in me.
2014 was a really bad time for me and my family. Almost a decade later, it’s been hard to find any good that came of it, but I think now that I’m on this side of healing and rebuilding, we all know a lot more about mental health and the need to forgive and find closure, to make room to deal with new struggles and resolve them.
November 2020
No one who cares about me could understand what was happening to me in 2014 and it was frightening for everyone close enough to catch psychic shrapnel. xAPI still required leadership, and I was managing two similar, but different, communities of people who also depended on a consistent and steady hand to keep things going. So for three years I hustled until there’s was no more hustle to be had.
2017 was supposed to be the year MakingBetter finally would be in the black. I had spent a lot of time and effort in 2016 building up strong business relationships with a number of potential clients, and going into 2017, we had multiple soft and even signed commitments for work, but within a week of the inauguration, much of that work (in the public sector, for social-good agencies and foundations) was canceled. Reeling from the loss of over $300K in expected work in just shy of three weeks, we continued to bootstrap our family on what little work we still had (not quite 10% of the business we lost).
By May, I knew something had to change. I was desperate to keep our family going while also trying to feel good enough to keep going myself… I made the decision that I would seek a full-time role so our family could be on more stable footing, financially… with the hope that such stability would buy me time to work on getting better.
That is exactly what happened. Employer-provided health insurance plans are of far higher quality than those on the Exchange though ACA. As best as I understood my needs at the time, I was working on managing anxiety and depression. We had opportunity to develop the xAPI Profile Server… after I started a regular day-job. I was/am still transparent with my employer about my own business and projects — those are boundaries I navigate much better having worked with so many different employers over the years.
What I couldn’t navigate was dealing with a government stakeholder for smaller-but-significant project, who’d agree to one thing while doing and pursuing something different. To the degree that this person made some outlandish and untrue statements in public forums, requiring me to respond with legal representation… that was the last straw and I melted down again. I simply could-not… again. I was taking everything as a threat… again.
Ultimately, I had to see for myself that this was a pattern of behavior that was repeating for me to say to myself… “shit, I might be Autistic.”
Rebuilding for Resilience
In November 2020, I sought formal assessment for diagnosis, one way or the other, for autism. I didn’t need it to know if I was Autistic; that part became obvious. With a standardized assessment, it might pinpoint things to prioritize for self-work.
It revealed, for example, that I have really terrible short-term memory and poor spatial/abstract reasoning skills. Now… most people I’ve worked with never see this because I have so many tools — skills I’ve learned, methods I’ve mastered — to support this need in a lot of situations. However… you’ve never had to have me ask you multiple times a day “Have you seen my water bottle?” because I cannot remember where I placed it.
I spent at least three months just researching the findings in my diagnosis, talking with people who were sharing their stories on Twitter (back when it was still kinda useful). Much like how I’m finding and talking with people on Mastodon these days, I’m paying forward what other autistic folks did for me in late 2020 and 2021. I made connections between Applied Behavior Analysis (ABA)* and the fragility of Cognitive Behavior Therapy (CBT) when context changes and… most notably… you lack sensory awareness of context changes.
Autism is tricky like that, which is why ABA is frowned upon by much of the (vocal) autistic community online, and also why autistic folks look poorly on “Autism Speaks” as an organization.
C-PTSD
At any rate, in reading about how others struggled with their autism, it informed how I sought a therapist in 2021 who understood autism and the weird ways it can present itself, who understood the ways in which unresolved trauma in autistic people compounds to a point where I would have “trauma echoes” — I’d be replaying something from the past in my head but unable to discern if that was a conscious choice or not… and then having to exhaust myself trying to figure that out… every time.
A meltdown/burnout is a sign that things need to change. If you don’t change the things that needed changing, however, that trauma never gets resolution. Closure doesn’t happen. It festers while you build atop of the rot. Put enough pressure on that new scaffolding and it breaks where it’s weakest — from that original spot, but now it’s spread up and increased. No time to fix that? Ok… lay down more supports for yourself… but they also start to ruin while more pressure continues to apply from life and time, which never stop…. until you stop because you. simply. cannot.
Complex Post-Traumatic Stress Disorder* might best be described as such,
“If you have complex PTSD you may be particularly likely to experience what some people call an ’emotional flashback’, in which you have intense feelings that you originally felt during the trauma, such as fear, shame, sadness or despair. You might react to events in the present as if they are causing these feelings, without realizing that you are having a flashback.”
Mind.org.uk, 2021
Once I understood what was happening, I… well, I did a lot, but to try and sum it up in a sentence — I went all data-engineer on what feedback I was acting on, and reverse engineer-ed what the calls and responses were.. when these trauma echoes would emerge, in what way they’d demonstrate… I could get it down to a few things that might trigger these echoes in my head:
- I am tired and need sleep.
- I am hungry and need food.
- I am lonely and need belonging.
- I am constrained and need freedom of movement.
- I am confronted with injustice and need things put right.
With this understanding, I’ve been since able to catch and release a lot of intrusive thoughts. How I got to that mental place will be the focus of a lot of writing to come. For now, I just hope I’m establishing a vivid description, with some fuzzy boundaries, of autistic burnout and complex PTSD so that if you see this in yourself or someone you care about, you have some language to help you.
Related
- https://www.cdc.gov/ncbddd/autism/data.html ↩︎
- https://web.archive.org/web/20120310191752/http://www.aaronsilvers.com/2010/10/ctrl-z-and-ctrl-n/ ↩︎
- https://www.autismspeaks.org/applied-behavior-analysis ↩︎
- https://www.mind.org.uk/information-support/types-of-mental-health-problems/post-traumatic-stress-disorder-ptsd-and-complex-ptsd/complex-ptsd/ ↩︎