Autistic/AuDHD Burnout - Between A Rock & A Hard Place (Part 2)
In Part 1, I wrote about what Autistic/AuDHD burnout is and shared the research that led to defining it. I mentioned the common symptoms that people who experience burnout share. I also talked about how Autistic/AuDHD burnout isn’t the same as clinical depression and shouldn’t be treated as such, but that it can lead to or co-occur with depression. I griped about the barriers to supports and treatment and shared some of my own and my family’s experience.
Here, I want to dig deeper into the specific symptoms and give you some examples from my own life to illustrate how each of these can look - Keeping in mind that the examples I share are by no means a complete list for me, nor do they speak for the specific experiences of others. Although there are traits neurodivergent folks have in common, and similarities in the things we experience during burnout (and otherwise), we are all unique individuals.
It’s important to understand that someone who is strictly Autistic may present very differently than someone who is strictly ADHD, for example. And even then, no two Autistics or ADHDers are exactly the same. We are not a monolith. The assumption that these neurodevelopmental conditions all look exactly the same in every person, has contributed to so many of us falling through the cracks and ending up in dire straits.
Now that we’ve got that out of the way, let’s get to the point. Below, I break down each of the symptoms/categories I mentioned in Part 1, and dive into my own lived-experience of them…
Profound and persistent exhaustion (mental, physical, emotional):
Tired, exhausted, feeling worn-out and depleted are states we all experience in life. This is a part of being human. But the ALL consuming, bone crushing, body levelling, brain sucking, life altering, ever-present, Sisyphus-like exhaustion of Autistic/AuDHD burnout, is a completely different animal. Especially when burnout has reached the severe or chronic phase.
The exhaustion experienced during burnout, is not just physical. It’s a full-system exhaustion. In my experience, the emotional piece may be the hardest to endure. Emotional exhaustion can lead to some dark places. Including suicidal ideation.
When I’m in burnout, no matter how long I sleep, I’m never refreshed. Not for one minute. I can do ALL the sleep hygiene things (I even have a c-pap machine for mild apnea) and I’m still always walking around like I’m carrying a bag of medicine balls - that I’m supposed to pretend aren’t there.
I know this sounds far fetched, but I actually have a recollection of one day in March, many years ago, (I think it was 2012) when for some reason, I woke up feeling better rested and more at ease than I could ever remember. I keep waiting to have that experience again. Hasn’t happened yet.
I want desperately to do certain things - like go for walks in nature, maybe go out for dinner, have some people over for an evening, re-paint my weary kitchen, or even to get through a book I’ve been really interested in reading - but I’m so profoundly exhausted that I often can’t even will my being into action, or muster the energy output or mental focus to do any of these things.
In burnout, I’m keenly aware that I must reserve the small bursts of energy I’m graced with, for absolute essential tasks – like parenting, laundry, groceries, essential medical appointments, working to make money when I’m able, trying to advocate for myself (and others), attending important/mandatory functions, or other non-negotiables. When I do any of these things while I’m in burnout, I know I’ll pay the price tenfold.
People who aren’t personally familiar with this kind of burnout, have trouble understanding it. (In their defense, it’s difficult to truly know an experience unless you’ve lived it). Neurotypical and able-bodied folks (and maybe even some neurodivergent folks in ableist denial) tend to view lack of full participation in life as a character flaw and/or a matter of choice. And sometimes it is a choice, because choosing not to participate can be a survival tactic.
For example, attending a gathering that’s supposed to be fun, can leave me in a zombie-like state for several days or longer. Hauling my weary, beleaguered ass around and pretending to enjoy that experience for the benefit of others, just further contributes to the burnout. It’s not that I don’t like the idea of it, it’s that when I’m in burnout, these things are one more chore, and that sucks.
After awhile, you start to wonder if it’s is worth it, or if borrowing from tomorrow to pay for today is just preventing you from recovering to the point you might actually enjoy life again, instead of just tolerating it.
Loss of skills (executive functioning issues, increased difficulties with communication, inability to keep up at work and/or with life responsibilities, etc.):
This is exactly what it sounds like. In burnout, we literally lose skills. We can no longer do things we used to be able to, or we can’t do them with the same accuracy or efficiency as we could in the past.
This can (and often does) even include basic skills like speech and the ability to navigate social situations.
This symptom can look like a decline in cognitive ability, and it can be scary because, especially when you’ve reached a certain age (ahem), you can wonder if you’re losing your faculties.
Before I go into specific personal examples, it’s important to note a couple of things. Firstly, menopause and other periods of life where hormones are in significant flux, can exacerbate this (and other symptoms of burnout). Secondly, in autistic children in particular, this phenomenon is often seen and referred to as “regression.” As I noted, even children can experience burnout.
My own experience with loss of skills shows up in things like: not being able to find the words to explain myself, taking ages to write a simple email or extra-extra long to write a blog post (like this one), mixing up schedules and appointments more frequently than usual (or having to reschedule them because I can’t even), not being able to keep a tidy house (which I crave because it’s soothing to my nervous system), even forgetting to do basic things like brush my teeth (when it gets to this point, I know things are BAD).
I also notice that I’m more clumsy, less able to follow instructions without labouring over them, and have more decision paralysis than usual. Some days, deciding what to wear, or what’s for dinner, seems like climbing Mt. Everest. I will stand outside my closet and stare for way too long, then land on the same old rotation, because it’s easy and comfy.
Recently, I’ve noticed how much more of a task it is to be in the kitchen. I love to cook. I’ve mentioned that food is a passion (special interest), but when I’m in burnout, making even a tried-and-true dish, requires mass amounts of concentration and effort. I find myself fumbling around and having to refer to and follow recipes for things that would normally be no-brainers. This is frustrating and sad and makes me less inclined to cook. (You see how this can be a slippery slope).
Increased Sensory Sensitivities:
Oh. My. Shattered. Nerves.
I’ve always had sensory issues – although I didn’t always recognize them for what they are (part of my autism), and evidently, neither did the people around me. Over time, like most neurodivergent folks, I learned to downplay my discomfort or keep it to myself – because nobody likes a complainer. What I’ve discovered is that when I’m in burnout, my sensory sensitivities are amplified.
One issue I have is with sound. I’ve always slept with one pillow under my head and another over it – leaving my nose and mouth uncovered to breath. It’s somehow comforting, but also, it helps block out noise. When I was a kid, my family did a lot of socializing and entertaining. It would often be noisy late into the night. I guess I developed the pillow strategy to cope and protect my sensitive ears.
I recently got a set of ear defenders (which I modeled on Facebook and Instagram). I got them to wear while I’m trying to write or work when other people are in the house (which is almost always). I don’t know how I ever lived without them. They block out the constant background noise that was apparently even more distracting than I ever realized. I wish they also blocked out my tinnitus. Sigh.
As for my sense of touch, I’m sensitive to certain fabrics. I donated every pair of polyester dress pants I owned when I quit teaching, and then again, when I left working in a traditional office. I also can’t tolerate the feeling of wool directly on my skin, and itchy clothing tags are my nemesis. More recently, I have a hard time with necklaces (which I used to wear all the time), or even t-shirts that sit in the ‘wrong’ spot around my neck. They make me feel like I’m choking. And underwire bras, which I actually wore most of my life - so over it. I can’t tolerate the discomfort anymore.
Then there’s my super sensitive nose. If you’ve ever been pregnant – you might know the experience of having a heightened sense of smell. That’s kind of my baseline. When I’m in burnout, I can’t even. The first trimester of my second pregnancy, I couldn’t be in the same house as open parmesan cheese, which I normally love.
Certain smells give me an instant headache or feeling of nausea. I dread being hugged by, or in an enclosed space with, people who wear heavy perfume, cologne, hairspray, etc. Especially anything that smells remotely synthetic, flowery, or too woodsy. You know those people who think that scent-free policies don’t apply to them? They’re the worst. Ugh.
If someone hugs me who’s wearing a strong scent, I’ll be distracted by the residue left on my clothing and/or hair until I can change and sometimes even shower. I avoid the perfume/cosmetics section in department stores at all costs. If I can’t avoid it, I hold my breath and speed walk through, because gag me.
When I’m in burnout, and particularly since I’ve hit menopause, I have a sniffer like a bloodhound. The smell of French fries being cooked by my kids at 1:00 a.m., will wake me out of a deep sleep. Even though I’m behind a closed door and they’re way over in the kitchen. It’s like someone shoved the pan right up my nose.
Increased Meltdowns & Shutdowns:
I’ll keep this one brief, because I already wrote a whole blog post about meltdowns (and in it, I also mentioned shutdowns, which are the outwardly quieter but no less intense version of meltdowns). Long story short, when I’m in AuDHD burnout, it’s like every little thing is the straw that broke the camel’s back. I’m one giant raw nerve at the best of times (and have adopted strategies to cope with this), but during burnout, the distance from regulated to dysregulated to full-blown meltdown or shutdown, is almost nonexistent.
Pre-diagnosis, I thought I was just increasingly short-fused. I thought maybe menopause and general life shit were the reasons I couldn’t cope (and they for sure didn’t make it any easier). People around me reinforced the notion that maybe I was just a surly bitch. I internalized that message for a long time. Turns out, I was actually in chronic burnout, ceaseless total-system overwhelm, and having frequent meltdowns.
Decreased Ability to Mask/Camouflage Autistic/AuDHD traits:
This deserves a whole blog post of its own, and at some point, I’ll write or talk more about the concept of Autistic/AuDHD masking/camouflaging and my experience with it. But for our purposes here, what you need to know (if you don’t already) is that Autistic folks (and ADHDers, to some extent) learn from a very young age (even as babies) to mask (hide) our neurodivergent traits. This is a coping strategy we adopt (unconsciously, consciously and intuitively) to help us survive and fit into the neuronormative world. Which, let’s face it, is not kind to, or accommodating of, those of us who don’t fit neatly into boxes. Even though it likes to virtue signal and pretend otherwise.
It's important to acknowledge here, that people with marginalized identities (Queer, Black, Indigenous, etc.) know the experience of having to hide their identities or certain parts thereof. Code-switching and hiding one’s true gender identity, are two examples that come to mind. People do these things to protect themselves when they don’t feel safe. If folks have intersecting marginalized identities (for example they’re Trans and Autistic, or Black and ADHD) then they are further burdened by the effort and impact of masking. More so than a cisgender white autistic like me.
You might be thinking, doesn’t everyone hide or tone down their true selves sometimes? Yes, everyone masks sometimes to some extent. It’s a human thing. For example, most people have a work version and a home or off-work version of themselves. You may wear certain clothes to the office and change into comfies as soon as you get home. You may swear like a trucker at home, and watch your mouth at work or in front of certain family members.
This kind of masking is considered normal and is a very watered-down version of what neurodivergent folks do ALL. THE. TIME. Except maybe when we’re alone, or occasionally with people we feel extremely safe with – which are usually few and far between. Most of us mask so intensely and often that we find ourselves having identity crises because we lose who we are behind the mask. That’s not how it works for neurotypicals.
One of the ways people come to be diagnosed later in life (like me) is that we lose the capacity to mask as effectively, frequently, and sustainably as we had been able to in the past. This is directly related to burnout. See, Autistic/AuDHD masking is a kind of hypervigilant state that takes up an unfathomable amount of energy, internal resources, and cognitive bandwidth. When we’ve poured all we have into meeting life’s demands, obligations, and neuronormative expectations, the well runs dry and we have no resources available to keep cos-playing neurotypical. Burnout has been identified as one consequence of masking. (Pearson and Rose, 2023)
Social Withdrawal (Beyond What is Normal for the Person)
Generally speaking, Autistic folks crave (and need) more alone time than the average bear. This doesn’t mean that we don’t like people or enjoy being around them. It also doesn’t mean that all autistics are introverts. People who are AuDHD (both autistic & ADHD) can come across as very social and extroverted – this is another reason why some of us aren’t identified earlier in life.
When I was a teenager and young adult, to the people around me, I could appear the life of the party and I was often the hostess with the mostest. In my social butterfly heyday, people who weren’t paying close attention wouldn’t have known I often retreated for stretches of time. Sometimes, it was an unnecessary trip to the loo where I could spend a few minutes breathing, regulating and not having to ‘people’. (I still do this. Even in my own house). Sometimes, I would retreat for longer stretches - hours or days at a time. Ignoring this genuine need for solitude leads to me either over-indulging in drink as an (ill-advised) coping mechanism in the moment, or being irritable, closed off, and even physically ill. It can also lead to more frequent meltdowns and shutdowns.
As I got older, and the demands on my time, energy, and internal resources increased, and as challenging life events robbed me of more and more capacity, I hit severe burnout. It was at this time that I began to withdrawal socially in a bigger way. I just couldn’t keep up the pace anymore. This irritated and perplexed some of the people in my life, and for this and other reasons, some of my relationships suffered or faded out.
The last couple of years, since I entered menopause, have been gruelling. As I mentioned at the start of this piece, I’m in a constant state of burnout. It takes all I have to get through a day. I have almost no capacity for socializing, especially if it requires me to mask. Most of my need for connection and interaction are met in my own home. When I do socialize, it’s with very safe people who know, understand, and accept what’s been going on in my life, and who don’t take it personally when I tell them I just can’t. These days, some of my socializing happens online, especially among neurokin. I’m past caring what people think and assume about that.
Physical Health Issues:
This one is a bit tricky to address because aside from the profound and persistent exhaustion I covered earlier, there are many health conditions that research indicates commonly (but not always) co-occur with Autism and/or ADHD. Some examples of these co-morbidities are: connective tissue disorders like Ehler’s Danlos Syndrome, POTS (Postural orthostatic tachycardia syndrome), Dysautonomia, Mast Cell Activation Syndrome, Chronic Fatigue, Fibromyalgia, IBS, Long-Covid, Autoimmune Conditions, and many others.
Dr Mel Houser is an autistic medical physician in Vermont, USA, who started a non-profit health clinic serving mostly neurodivergent patients. She refers to these co-occurring, interconnected conditions as a cluster or constellation. She has been instrumental in helping neurodivergent people and the clinicians who treat them understand that “everything is connected to everything” and that treatment shouldn’t happen in silos. More on this can be found at her website which I’ll link at the end of this post.
These medical conditions can be triggered/exacerbated by stress, and when a person is in burnout, these issues can flare. It’s a bit of a chicken and egg situation.
To bring it back to examples from my own life, I was diagnosed with IBS (Irritable Bowel Syndrome) around my early 20s. Although I’ve worked hard to manage this condition to the point of remission for long periods of time, my IBS flares when I’m in burnout.
I’ve also been diagnosed with Fibromyalgia. I’ve had bouts of chronic pain since as long as I can remember. I’ve also had some other ‘weird’ health issues. At the height of the serious burnout that led to me leaving teaching, I was told by a naturopathic physician that I likely had Fibromyalgia. I was only formally diagnosed with Fibromyalgia (and Osteoarthritis) by a rheumatologist in July of 2023. Again, the symptoms were flaring during burnout.
Recently, I saw an ENT specialist who diagnosed TMJ (Temporomandibular Joint) Disorder. I’ve actually cracked four back molars from clenching my teeth (mostly in my sleep) when I’m under extreme stress.
I suspect there are other conditions I may be diagnosed with if I ever had access to a physician like Dr. Houser. Since that’s unlikely to ever happen, I educate myself, manage things as best I can and wish for the best.
My hope is that sharing all this has given you some food for thought, and a better understanding of Autistic/AuDHD burnout. I also hope it serves as an entry point to a recently recognized, long misunderstood, yet very real phenomenon that profoundly impacts the lives of more people than we currently know. I’m crossing my fingers and toes that the dialogue and research on burnout permeate the mainstream sooner than later.
I dream about a day when medical providers and the systems they work in, are better-informed and able to understand, identify, diagnose, and appropriately treat Autistic/AuDHD burnout. I also imagine a society where all of us get the understanding and support we need, and nobody finds themselves circling the drain of Autistic/AuDHD burnout.
On a personal note, I long for a future when life’s pressures and demands ease a little, and I have more time and capacity to tend to my own needs. I pine for a life in which chronic burnout is a bad memory of an extended challenging period in my life. In the meantime, I do what I can, when I can, and for who I can, and try not to beat myself up for falling short.
If you think that you or someone you know might be in burnout, here are a few resources that may help:
Sources/Resources (This is by no means an exhaustive list of available resources):
Article on Autistic & ADHD Burnout by Dr. Megan Anna Neff https://neurodivergentinsights.com/mentalhealthresources/autism-and-burnout-glypb
You will find many other informative and useful resources on this site.
Article on Autistic Burnout & Extreme Burnout Crisis by Viv Dawes Autistic Advocate https://www.autisticadvocate.co.uk/autistic-burnout
Website of Dr Alice Nicholls where you will find tons of resources centred around autistic burnout
https://www.dralicenicholls.com/
Website of Dr. Mel Houser’s non-profit medical clinic where you will find many resources.
https://allbrainsbelong.org/
Dr. Natalie Engelbrecht ND RP, Dr. Debra Bercovici PhD, Eva Silvertant BDes & Kendall Jones, “The Ultimate Guide to Autistic Burnout,” Embrace Autism, 2024. Ebook available at:
https://embrace-autism.com/the-ultimate-guide-to-autistic-burnout/
Amy Pearson & Keiran Rose, “Autistic Masking: Understanding Identity Management and the Role of Stigma,” West Sussex, Pavilion Publishing & Media, 2023.
Podcast Episodes on Burnout:
The Neurodivergent Woman Podcast:
https://omny.fm/shows/the-neurodivergent-woman/autistic-burnout
Divergent Conversations Podcast:
https://www.divergentpod.com/blog/ep-2
The ADHD Adults Podcast:
https://podcasters.spotify.com/pod/show/theadhdadultspodcast/episodes/Episode-59-ADHD-Burnout-e25vb8f
Podcast Episode with Dr. Mel Houser on Divergent Conversations:
https://www.divergentpod.com/blog/ep-15
YouTube Video by Orion Kelly on The Differences Between Autistic Burnout & Depression:
https://youtu.be/ltbQZ6qDBhs?si=Xd_B6ndGaszRk-yA