Autistic Burnout – Week 4 of #TakeTheMaskOff

I don’t have one of my researched, informative posts on this week’s topic. Yes, I’ve read other accounts of autistic burnout. I can’t recall off-hand if I’ve read any formal research or not. I know in a way what I experienced personally, though I struggle to find words that truly capture how it felt. Moreover, it was so pervasive it often lurked at the edges of my awareness. I can also find threads of common experience in the stories of non-autistic people struggling with the ongoing effects of complex trauma, especially from childhood. I don’t think there’s a single explanation or underlying cause for my personal struggles. I believe it was the weight of everything finally becoming more than I could carry.

More people, I think, have heard of autistic meltdowns and shutdowns than autistic burnout. Those are the short term and often visible results of sensory overload and emotional dysregulation. I had both as a child. I mostly learned to control them because I had to do so. I found a way, even though one unintended consequence apparently involved disrupting my interoception much more than I ever understood, at least until it almost killed me last year. After my last major meltdown in adulthood at age 22 landed me in a psych ward over a weekend, controlling them became one of my driving imperatives in life. No, that’s not really accurate. I was driven to control it as a young child. It’s always been an imperative. That was the last time in my life I lost my battle against it. I’ve let the energy out at times, but only in controlled doses in private where nobody could see. And I never, ever let it take control. I’m aware that many, if not most, autistic people cannot manage the overload and dysregulation the way I do. I don’t really recommend my experience, but it has certainly made my life more manageable than it would otherwise be.

Autistic burnout, by contrast, is a long, slow process. For me, especially since I had no idea I was autistic, I had no explanation. Things I had always been able to do became harder over time. It’s not exactly regression, but some loss of skill accompanied it for me. I felt increasingly overwhelmed. I began to struggle to get through most days. I started becoming less capable and less functional. I tried anti-depressants. The one I tried turned the background sense of not wanting to be here or be alive I had managed since I was nine years old into full-blown suicidal ideation. I tried therapy, but it went nowhere. That was always my experience of therapy before I finally figured out I was autistic. I discovered I had sleep apnea and treatment for that gave me a burst of new energy for a couple of years. I discovered I had celiac disease and my body was in bad shape. Treating that improved my energy again for a few more years.

But none of those improvements lasted. I could manage less and less. Every day became harder and harder.

Autistic burnout felt like losing my ability to be a human being, at least in any way that held meaning for me.

I probably reached my lowest point in 2015. I realized how much it was impacting my family and used raw force of will to make myself do better. I’ve begun to realize these past two years just how strong my will can be. I stopped sinking, but couldn’t make much headway until my ASD diagnosis a year later. That finally gave me a framework, explanation, structure, and grounding from which I could work. Things that had never made any sense finally fit. It hasn’t been any sort of magic pill. Progress has been uncertain and slow. But I have finally been able to make progress.

I have some hope again for the first time in a very, very long time.

The ASD diagnosis also gave me the framework and insight to begin to perceive, understand, and work through the impact of toxic stress from my traumatic childhood. I’m barely beginning that work and it’s really hard. I can distinguish the dysregulation of emotional flashbacks from the autistic response I have to overload and that different sort of dysregulation now that I know both exist. They have a different … texture to them. My somatic response, now that I’m learning to pay attention to the signals from my body, is different with each. And only the former comes tinged with dissociation. Complex trauma was certainly a factor in my burnout, but most of it followed the course I’ve seen others describe with autistic burnout, especially the part about slowly losing the ability to do things I had long done.

Life got really, really hard even as the objective demands on me grew less. It made no sense. And that was perhaps the hardest part for me.