Why autistic burn out needs to be understood
Skill regression in autistic burn out explained in the final part of this series :: ORIGINALLY PUBLISHED SEPTEMBER 19th 2024
Welcome back. To recap, Since this is my worse burn out, and not my first time, therefore, my body is tired, I am not bouncing back as quickly. I am very much dealing with an allostatic load at this point1. It’s taking a lot more quantity of the supportive elements to help me make a bit of progress than I needed for my two first burn outs to resolve.
But I am glad to report that they still do work. So if you find yourself in the worst of the worst autistic burn outs like I did this past winter and spring, with the horrible list of symptoms I listed in part 1, have hope, it does get better. Slowly but surely. As Sarah Shotts, an amazing autistic artist and writer, shared in the comment of that piece, “I’ve had a very similar experience. I almost wish we had another word for it because I feel like it’s more intense and disabling than the words burn out communicate.”
This comment really moved me because I felt extremely seen by it. I’ve referred to it internally so many times since I’ve read it. It’s hard to understand how truly bad autistic burn out is, and part of that is that the word(s) burn out don’t fully grasp or convey the magnitude of what happens to our brains and bodies when we reach that point. This leaves us unable to communicate the severity to others with their full understanding of such.
I still do not think most people understand what I went through with autistic burn out this last year also because it’s just not really talked about or represented anywhere in media accurately. The only representation that highlights autism well for me is Quinni on Heartbreak High (here’s a scene displaying what is has been like for me to be at a restaurant every time I’ve ever been to one), played by actually autistic actor, Chloe Hayden. And it shows Hayden is actually autistic because the representation is so damn good. However, there is so far, no representation of her character going through burn out. It would be really cool if there was in the future.
Quinni in Heartbreak High - picture found on heartbreak high fandom page
In her book, The Autistic Survival Guide To Therapy, Steph Jones, who is both autistic and a therapist says this about autistic burn out:
The feeling of severe autistic burnout is quite possibly the worst feeling I’ve ever had. Worse than the meningitis I had as a child which almost killed me, worse than the two hours of reconstructive surgery I had after nearly losing my hand, worse than being run over by a car, worse than my complex PTSD flashbacks, and worse than the worse hangover of flu I’ve ever had.
I love this quote because it’s so damn honest - autistic people who have gone through severe burn out literally will describe this as worse than being hit by a car. Like common now. We have to take autistic burn out seriously, both the prevention and the healing of it. It is truly that bad.
It is clear that anyone who has gone through it, understands how devastating autistic burn out can be. Since I didn’t see my experience mirrored back to me much, I often had trouble orienting to, and therefore understanding, my experience well. I didn’t know what to expect which created a lot of anxiety. This was true until I found wonderful people online who documented their autistic journey - such as Devany Amber Wolfe and Charlie Rewilding. Before I found Charlie writing about having to quit her law career and having to sit in a sensory friendly room day after day while the world went on without her for over a year because of autistic burn out, I had not seen such a similar account of my experience anywhere. As I followed her story and her healing, I was comforted, that I too, would be okay soon enough. Before I experienced Devany detailing how she was unmasking on her podcast, I did not know I could do such things so freely. Other autistic writers and artists have helped me so much. They’ve made me feel like we are not alone, because we aren’t. It’s just it feels that way until we find each other.
In my memoir, I wrote this following quote about still masking despite having created a life that suited a lot of my autistic needs; a life I intuitively designed based on attunement to myself around the time I started my intuitive and coaching consulting business in 2014, and healed from my first burn out as talked about in part 3 of this autistic burn out series.
My autism assessor, Dr. Pat, says the way I act is probably based entirely on having modeled my behaviors to match the neurotypicals around me so I wouldn’t be found out as different. I realize that while yes, I have created a lifestyle that suited my needs over the past seven years, at the moment of my diagnosis, I still relate to this. I still pretend multiple Zoom calls on camera per day in which I have to monitor my body language and facial expressions to make sure I look interested and engaged and am pleasing the people on the screen, is not a big deal. I still push myself past my limits to make the person I’m dating feel loved, forcing myself to do a date activity, even when I’m so overstimulated that I shake secretly in bed later that night. I prefer not to make eye contact very often when talking to someone, but I’ve learned to do it and force myself to maintain it. I may work from home, have an alternative career, date women as a woman, and be proudly weird, but I still pretend that I’m not autistic. I’ve learned to hide my challenges and differences with hypersensitivity to stimuli, social functioning due to that hypersensitivity to stimuli, repetitive behaviors, and deep interests like a pro. Everyone around me treats me like a neurotypical and expects neurotypical things out of me, so I do my best to provide them. When I can’t measure up, I self-loathe and feel that familiar old feeling of being a failure."
Can You Turn The Lights Off? : The Journey to Becoming Your True Self (pp. 360-361). Kindle Edition.
Here is what I am currently doing to help myself heal from autistic burn out:
1. I live with my care giver, and this gives me support, consistency and stability. I would have seen my lack of complete independence as an embarrassing life failure before as this is not the neurotypical norm for an adult my age. Now I see it for the extreme privilege that it is and how it has literally saved my life to have this reliable and healthy assistance with my support needs2. I would not be here without this and that is not a figure of speech. It’s super literal.
2. I am unmasking and am becoming more honest about my disability. Prior to this autistic burn out, I wanted to go about my life having a disability but having no disabled needs. I did not want to show my “weaknesses” around how easily I went into overstimulation and that translated to sensory pain and a slew of symptoms really fast. Over time, putting myself through this repeatedly without saying a word and suffering in silence, led me to this burn out. So now… No more pushing myself to sit through being under lights I can’t handle in offices of practitioners, no more tolerating sounds that hurt me, no more having a very busy social schedule that I cannot keep up with naturally, no more not expressing my feelings and what works for me and doesn’t, no more being exposed to familial chronic stress and not naming I cannot handle it (because I think I should be able to), no more going past my limits and doing date night activities only to be shaking in bed later on from overstimulation, no more hiding from people what is very hard for me in terms of communication or daily living: making eye contact, stimulus, demands, screen time, etc, to be strong or to avoid being “a bother”. No more hiding that I feel lonely when and if I have to mask.
Low demands and demands that match the capacity. I am on a medical leave of absence for the foreseeable future after a full time successful ten-year career in the intuitive arts and in life coaching services that went on from 2014 to 2023 (and I am so damn proud of everything I created and accomplished during those ten years). BUT it’s a huge change and one I did not take very well in the past several months (like at all), but it is important that I recover so it’s what my little family and I have decided for my wellbeing at this time.
Stimming without punishment. I move my body in the ways my body wants to move. This is part of unmasking too.
I’m still working on lowering my exposure and the duration of this exposure and/ or implementing boundaries around:
1. High stress
2. Sensory overload (this is getting better as my injury does good progress)
3. Incompatible environments (I really love Dr.Luke Beardon’s book reducing anxiety in autistic adults for help on understanding environment in the autistic context – it’s changing my life in a good way)
The more I keep solidifying these practices that are working and letting me see some progress and the more new supportive elements I can introduce with time, the more I will see healing occurring and the more I will feel back to myself.
On skill regression
I am experiencing much more severe skill regression in this burn out than I ever have in my other two burn outs. Skill regression is really why autistics everywhere reporting on autistic burn out are warning people about it and want to be taken seriously in the face of health care professionals. Skill regression can steal your life from you as what used to be easy isn’t possible to do at all, or to do on your own, or to do at the same rate you used to be able to without consequence. This is why it’s important we know how to prevent burn out in the first place and why it’s important we know what to do when we are in burn out acutely or heading towards that.
Some examples of skill regression are:
Unable to do self-care tasks consistently (being self-directed is a developmental milestone you can regress on majorly in acute burn out)
Loss of executive function skills like planning groceries, meals, feeding self as well as lack of energy to cook, or issues with task initiation like remembering to drink water, exercise, move, etc. Other executive function dysfunction can be around self-control, flexibility, perseverance, time management, etc.
Organizational skills can get very affected at some point in acute burn out (which is also executive function skills being regressed), which can be jarring for the people around the autistic person in burn out and the autistic person themselves, as often times autistic adults are very self-directed, detailed oriented and efficient in domains such as appointments, paying bills, watering plants and ‘staying on top of things’ so it feels like they are not themselves
Sleep dysfunction
Unable to drive or take self to appointments and socially present well (lack of eye contact, zoning out when overstimulated, unable to retain information in these cases)
Emotional regulation regressed
Motor function skills decreased, which leads to vestibular and proprioception issues
Demands, including work or social demands, that were completely do-able without consequence before, leading immediately to overstimulation in acute burn out which means brain fog, overwhelm, ringing in the ears, lights being too bright, sounds being too loud, the ‘I have no skin’ feeling, anxiety, which could all lead to meltdowns or shut downs including selective mutism and loss of speech or dissociation and disembodiment3
As you can see, skill regression can be quite serious and life-affecting, and many autistics in burn out can live all of these simultaneously for a prolonged amount of time. There’s that, and then there’s all the fatigue.
I remember in my first burn out, I was so fatigued that my mom blew dry my hair every morning before school for months at a time. In my second burn out, I was so fatigued that making a smoothie felt difficult and literally some days, impossible. A smoothie. Like straight up, putting 2 bananas, frozen fruit, a bit of greens, and some OJ into a blender, pouring into a glass, and then putting all the ingredients away was physically painful because I was so fatigued. Oh god, then there was washing the glass! I’d pile up dirty dishes in my room for days. It was so gross.
Outside of autistic burn out, blow drying my hair or making a smoothie, or washing dishes, is not difficult and it’s hard to comprehend even for me, when I’m not in it, how real the fatigue of autistic burn out is or can be. I totally understand why some people do not understand how brutal this is, because until you’ve lived some sort of neurological fatigue, it’s hard to actually comprehend how life-altering it is. This time around, I was so fatigued at the beginning that taking a shower felt like it was an Olympic feat. Now it feels easier as I slowly recover. Some days, I am even forgetting that it used to be hell on earth to bathe or brush my hair during the winter and the spring because the energy is back as my brain and nervous system recover from all the ‘over heating’ to use a metaphor for what it feels like to have a burnt out autistic brain and nervous system. Other days, when I am in the normal backslide of the ebb and flow of recovery I am like, how much longer will this take? Ahhhh.
I gather I will not be able to return to a neurotypical pace of life in any way, in any sector of my life should I want to make a full recovery and never step into this bad of a burn out ever again. My autistic body has been too worn out at this point and I wouldn’t want to risk even more dire consequences.
What I did between burn outs previously was adopt a neurotypical pace once again once I healed enough in order to ‘get on with it’. Whether that was a neurotypical pace in terms of family, friends, work/ business or romantic relationships; I at least went back to a neurotypical pace in one area. And that does eventually lead me back to burn out. So no more. That’s why this particular unmasking I am doing now is so potent.
I am willing to do that- to grieve that I will not have a neurotypical existence. I am willing to have fierce boundaries, to protect and nurture my brain and nervous system as my top priority. Even if that means I make compromises. Even if that means I lose certain things that are not compatible with me and that’s hard for me to accept. I’m willing to be patient as my brain and body heals. And it’s taken me some time to arrive to this optimism, but I know for sure that I am going to heal this burn out. I have confidence in that because I know what I need now. This is why having a diagnosis of autism really helps, because we know how to approach ourselves, and also why naming autistic burn out and understanding it, how it happens, what it does, and what we need to remedy the impacts of it that are plaguing our lives is life-changing. And also, it helps that I’ve healed two really bad autistic burn outs before by offering what was missing to my nervous system, so I know I will do it again, even if the resources need to be different and more extensive. I refuse to succumb to the ideology that I am going to permanently be in hell because I am in this disabled body. I know to be realistic, I am disabled, but part of that, this being realistic thing, is also knowing very deeply that there are still good days right around the corner and I want to stick around to live them.
“Allostatic load refers to the cumulative effects that chronic stress has on mental and physical health. More simply, it refers to the 'wear and tear' on the body that life events and environmental stressors create. When events occur that exceed an individual's capacity to cope, allostatic overload may occur.” - https://www.verywellmind.com/what-is-allostatic-load-5680283#:~:text=Allostatic%20load%20refers%20to%20the,events%20and%20environmental%20stressors%20create.
“The concept of “support needs” refers to the pattern and intensity of supports that are necessary for a person when it comes to participating in typical activities” -https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7766556/#:~:text=The%20concept%20of%20%E2%80%9Csupport%20needs,premise%20of%20the%20support%20paradigm.
Please please please watch this video on sensory overload (overstimulation) by autistic artist Sarah Shotts:https://youtu.be/52fR_k8moH4