Autistic/AuDHD Burnout - Between A Rock & A Hard Place (Part 1)

I’ve been in and out of burnout for decades now. Mostly in. The severity waxes and wanes, but burnout never goes far away. Not entirely. Sometimes, it sort of just hums in the background – an ever-present irritation, like my tinnitus. Also, like tinnitus, it lets me almost forget about it for brief stints. Just long enough to think I’m on the upswing and then, enter a stressful situation/day/week (which happens with frequency) and BAM! Full-blown burnout takes me out. Like a baseball bat to the knees.

The length of time between feeling like I may be climbing out of the burnout bog and being sucked straight back into the abyss, has gotten shorter and shorter with age. Resilience, I’ve discovered, isn’t static or infinite. When life’s curveballs keep coming, and there’s a lack of both adequate time and support available, burnout is inevitable.

The opportunity to fully recover from burnout has never been an option for me (and I dare say many others). How does one take the time and adopt the measures required to recover - amidst the endless stress, responsibilities and obligations of adulting, parenting multiply neurodivergent young people with various support needs, chronic pain and other health-related issues, navigating neurotypical hurdles and obstacles at every turn, societal and familial expectations that are never met, and the dogpiling of past and ongoing trauma, all while navigating the horrors of capitalism and colonialism?

Sure, I’ll just ignore all that, reach into my bottomless piggy bank, and chill-out till I’m fully recovered. No worries, mate.

UGH.

Truth be told, having been in chronic burnout for as long as I have, I’m not sure if a complete recovery is even possible. I mean, I hope it is, but I won’t hold my breath. I’ve learned to let go of, or at least to lower, a lot of expectations at this point in life. I’m embracing the art of radical acceptance, and finding it to be infinitely more liberating than the years I spent worshipping in the ‘cult of positive thinking.’

These days, I’m more of a realist. And the reality is that I just don’t know if I’ll ever fully rebound.

Some of you might know the experience of Autistic/AuDHD burnout all too well. Some of you might not realize that you (or your child or someone you know) is currently in it, or that you/they have been at some point.

Some of you might be scratching your head and wondering what the hell I’m talking about, or you might be equating garden variety/occupational burnout to what I’m talking about here (it’s not the same). So, let’s back up the bus a sec, and let me explain.

Without getting too into the weeds… In 2020, Autistic researcher and scientist, Dr. Dora Raymaker and her colleagues published a seminal study on the phenomenon of autistic burnout. The paper was titled, "Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew": Defining Autistic Burnout.

The research resulted in the following definition of autistic burnout:

“Autistic burnout is a syndrome conceptualized as resulting from chronic life stress and a mismatch of expectations and abilities without adequate supports. It is characterized by pervasive, long-term (typically 3+ months) exhaustion, loss of function, and reduced tolerance to stimulus.”

The study concluded that: “Autistic burnout appears to be a phenomenon distinct from occupational burnout or clinical depression. Better understanding autistic burnout could lead to ways to recognize, relieve, or prevent it, including highlighting the potential dangers of teaching autistic people to mask or camouflage their autistic traits, and including burnout education in suicide prevention programs. These findings highlight the need to reduce discrimination and stigma related to autism and disability.” (Raymaker et al., 2020)

It was early in my own discovery journey that I came across this research (and related articles, presentations, etc.) and was mind blown. As I wrote about in my diagnosis story, I suddenly had an answer as to what was happening to me during those periods of my life when no matter how hard I tried or wanted to, I could not function at “normal” capacity, or even close to it. This experience apparently had a name and current research to validate it - Autistic (AuDHD) burnout.

I’ve since heard many neurodivergent folks share their experiences of burnout. Although people might use different language to describe specific symptoms, these stories all have certain things in common (new and emerging research reflects this lived experience, as well).

The common symptoms/themes are: Profound and persistent exhaustion (mental, physical, emotional), loss of skills (executive functioning issues, increased communication difficulties, inability to keep up at work and/or life responsibilities), increase in sensory sensitivities, increased meltdowns and shutdowns, decreased ability to mask/camouflage autistic/adhd traits, and social withdrawal beyond what is normal for the person. In some cases, there are also physical symptoms. (Personally, I experience all of these things and will talk more on this in part two).

The research to date indicates that Autistic/AuDHD burnout is not caused by being Autistic/AuDHD. Rather, it results from being an Autistic/AuDHD person living in a neurotypical society, and not being able to meet the demands/expectations/criteria of neurotypical-centred life.

“Many undiagnosed adults are unaware that their autistic burnout and general mental health struggles originate from trying to ‘live a neurotypical life’ as an autistic with different needs and functioning.” (Engelbrecth et al., 2024)

It’s important to understand that burnout can happen at any age (even in childhood). The more times a person hits burnout, the more likely they are to have future episodes and the longer those episodes are likely to last. In addition, the more likely they are to develop other issues such as chronic health problems and depression (more on that below). This is why it’s imperative to recognize Autistic/AuDHD burnout for what it is, and to support it early and appropriately. This is also why I’m openly sharing my own experience, because I don’t wish burnout (especially the chronic variety) on anyone.

Although burnout shares things in common with clinical depression, it’s not depression. I repeat. Autistic/AuDHD burnout is N.O.T. depression, but it is often misdiagnosed as such.

Having said that, it may co-occur with depression. As I mentioned above, if Autistic/AuDHD burnout is left unrecognized and unsupported for too long, it can lead to depression. To complicate matters, treating Autistic/AuDHD burnout as if it is (or is only) clinical depression, can be ineffective, at best. In some scenarios, it can do more harm than good.

We, as a family, have anecdotal evidence of/experience with this. At various points, folks in our house were diagnosed/misdiagnosed with depression and/or anxiety and prescribed meds to treat it. When in fact, what we were really dealing with (or dealing with in addition to these things) was burnout and/or undiagnosed ADHD/Autism/OCD. The meds prescribed for depression and/or anxiety, either had a minimal impact on wellbeing, or in some cases, made the issues/symptoms worse.

Look, I’m not a medical professional, and I’m definitely not suggesting that people shouldn’t listen to/follow the advice of their medical provider. I’m also not suggesting that medication is always the wrong choice. It can be supremely helpful in some scenarios and sometimes people need to try different forms of an SSRI (for example) to see if one works better for them. (The same applies to ADHD meds). So, I’m not dissing meds or trying to replace the advice of your healthcare provider. I’m just sharing our lived experience and some current research, and suggesting that maybe we shouldn’t be so quick to chalk peoples struggles up (solely) to depression and/or anxiety. Sometimes, it’s more complicated than that. Sometimes, we need to dig deeper and consider other factors.

Aside from not knowing what Autistic/AuDHD burnout is when you’re dealing with/living it, in my personal experience, the most frustrating thing about burnout is that even once you do know you’re experiencing it, there’s very little support for you. Most medical professionals (and the general population) are still either completely unaware that Autistic/AuDHD burnout is a thing, or even if they’ve heard of it, they don’t necessarily know how to treat it appropriately. (I mean, our healthcare system as a whole is far from neurodiversity-affirming at present).

Another issue is that the recommendations given to recover from/treat Autistic/AuDHD burnout, are unavailable or inaccessible to many people. We love to give people advice with little to no consideration for their individual life circumstances. I’m guilty of doing this myself in the past. But now I know better, so try to do better.

Even in our so-called universal healthcare system in Canada – we tell people what they need to do to for optimal health and well-being, but we don’t consider all the barriers (financial, social, educational, systemic, geographical, cultural, etc.) that are in place to make it near impossible for many (maybe most) folks to do those things.

Case in point – earlier this year I saw a doctor at a local walk-in clinic who told me it was imperative I get a primary care provider. I had to explain to this seasoned professional, that our family doctor closed their practice last year and left us to figure it out on our own. Yes, I understand there’s only so much they are required, willing and/or able to do when closing a practice. So, we did all the things we were told to do – ordered our medical records (which we had to pay for out of pocket) and immediately got on the Healthcare Connect list. We’ve also contacted several physicians and nurse practitioners’ offices to see if they’re taking patients, and have asked healthcare professionals we know if they had any ins.

In a province (Ontario) which currently has an estimated 2.5 million people without a primary care provider, what the actual fuck else would you like me to do?  Also, how out of touch are you that you think it’s that easy? Ridiculous. Truly.

So, yeah, we tell folks what they should do, but make it near impossible for most of them to do it. Then we wonder why people are depressed, anxious, acting out, chronically ill, self-medicating, developing addictions, etc.

If we removed, or even lowered the barriers to people accessing the supports/treatments that they need, are advised to follow, and should be entitled to, we would save countless dollars, time, and other resources, in the long run. Instead, we seem to prefer performative gestures, half-measures, band-aid solutions, and various forms of ‘victim’ blaming and shaming. This is the system we’ve created and allowed to stick. It’s all so gross, bizarre, and inhumane.

I know that last bit may have seemed like a digression, but it’s important to name these things. Also, nothing happens in a vacuum. It’s all connected, you know.

Earlier, I listed the common symptoms of Autistic/AuDHD burnout. In part two, I’ll break those down and illustrate what each of these symptoms/experiences has looked like in my own life.

References/Sources:

"Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew": Defining Autistic Burnout. (Dora M. Raymaker, Alan R. Teo, Nicole A. Steckler, Brandy Lentz, Mirah Scharer, Austin Delos Santos, Steven K. Kapp, Morrigan Hunter, Andee Joyce, and Christina Nicolaidis. Autism in Adulthood. 2020;2(2):132-143)

Dr. Natalie Engelbrecht ND RP, Dr. Debra Bercovici PhD, Eva Silvertant BDes & Kendall Jones, “The Ultimate Guide to Autistic Burnout,” Embrace Autism, 2024. (eBook)

Amy Pearson & Kieran Rose, “Autistic Masking: Understanding Identity Management and the Role of Stigma,” West Sussex, Pavilion Publishing & Media, 2023.

Part 2 Coming Soon!