I started this draft back in April.
I got as far as the title.
Executive Functions include basic cognitive processes such as attentional control, cognitive inhibition, inhibitory control, working memory, and cognitive flexibility.
Autistic/Aspie Burnout was brilliantly defined by Planet Autism Blog as: “a colloquial term, that the clinical world doesn’t seem to acknowledge as a genuine part of the autistic spectrum, resulting from the attempts to ‘be normal’, fit in and keep up.”
I won’t go into great detail about what specifically happened, but after several months of desperately “treading water” at work, an angry parent aimed their acerbity towards the local authority directly to me in a quite public and personal manner. Having endured years of working as a front-line social worker and various complex situations in SEND, this was the first time that it was made personal, despite me figuratively bending over backwards to sort this case out in a way that the parent would be happy and, of paramount importance, the child would have their needs best met.
When this all kicked off, I was shocked and rendered speechless; I could not believe what I was reading. When I flagged this up to my manager, she was quite comforting and told me to not worry about it (let’s face it – this advice DOES NOT WORK for me). I went home and told my husband about it, and he too said to not worry about it (see above). The next day, we found out that this parent posted his venomous letter publicly to Facebook. Thankfully, the local authority has a team that can approach Facebook to have such posts removed; however, in my mind, it was out there. My name was out there with libelous information about my professionalism and my dedication to my work. I was floored… I was crushed. I was emotionally numb over the course of the weekend, but come Monday, the start of the next work week, I couldn’t bring myself to leave the house. By Tuesday, I couldn’t stop crying. I phoned my GP and was given an urgent appointment, resulting in me being signed off work with stress. My GP even said to me, “I’ve never seen you this low.” When I explained everything that happened, she was very sweet and empathetic and insisted that I be signed off work.
Now, to tie this all in with the title of the blog (that’s why you came here, after all, not to read my long-winded whinge about how a parent was mean to me).
Following my diagnosis nearly one year ago, one could argue that very little in my life changed – I was still me, after all – but I would argue that everything in my life changed. My understanding of myself changed massively. Suddenly, the things I silently suffered with, I had the language to be able to explain them rather than just “deal with it” whilst it was silently causing me agony with an “oh, it’s not a big deal” attitude when it was a massive deal to me. I gained a network of friends – my AsperSisters – who shared my experiences and provided the validation I had craved for so much of my life.
Whilst so many positives came from my diagnosis, there still was a lot of new information flying around my head and I became even more aware of my particular set of needs. Despite identifying these things and the best way to manage them, I kept pushing myself in my usual way… which has led to the burnout.
The burnout where migraines prevent me from getting out of bed, let alone doing anything remotely social and otherwise enjoyable. The burnout where these migraines led to me being physically unwell – a new symptom which I had never experienced before (bearing in mind I’ve suffered from migraines since age 14). The burnout where I am left feeling feeble and useless, not only to myself but to others who rely on me.
The burnout led to the regression. The regression is where things that were once easily completed now take much more cognitive and physical energy. The biggest area in my life where the regression has hit hard is cleaning the house. [Now I will clarify this by saying we don’t live in a filthy house which is on the verge of being condemned, but rather it’s in a perpetual state of “organised chaos”.] I can just about muster the energy to do a superficial clean & tidy if someone is coming round to the house, but doing a full-blown cleaning blitz like I have done in the past requires too much energy. I’m not sure if it’s just because the house is a lot more space to look after than my previous residences and I just can’t mentally break the task down into smaller pieces or what, but there is some sort of disconnect where I just get stuck.
Another area of regression is going shopping at the grocery store or being out in town. It’s not like I particularly enjoy either of these things, but I could certainly just about cope for enough time to get done what I need to and then leave without incident. Now, I will actively wait to go grocery shopping until a guaranteed quiet time (usually around 7pm Friday or Saturday and either 10am or 2pm on a Sunday) and sometimes have had to resort to putting in my earplugs or headphones in order to minimise sensory overload (noisy kids or the rickety stock trolleys staff drag along with squeaking wheels and rattling metal!). The only time we go into town now is when we get haircuts. Whereas before we would wander amongst the shops and look around for a while, our routine now is to go for an early lunch at Jane’s Pantry, maybe nip into Boots first to pick up a few items, then go home.
Going to Pilates once a week has also taken a back seat whilst I’ve been recuperating from this burnout. We are very lucky to have an amazing Pilates instructor local to us and we enjoy her style of teaching, as she looks after every participant individually and advises how to do the exercises in a way that is best for you. Because I’m no longer a member of the gym where we first started going to her classes, we instead go to one of her sessions at a village hall 6.5 miles away from home. However, by the evening on the day of the class, I just don’t have the energy to sit in the traffic that we inevitably hit to get there… trying to get there before the 6pm start to establish ourselves in our preferred place in the hall means leaving ours around 5:20pm… it should not take half an hour to travel 6.5 miles, but it does and it just takes any energy I had out of me. You know The Spoon Theory? Let’s say by 5pm I have about 3 spoons left for the day; 30 minutes of rush hour traffic can easily take away all 3 of those spoons, leaving me susceptible to meltdown.
I also feel bad that I’ve let a new friend down, though she says that she understands. I met Izzie at the Autism Post-Diagnostic Group I attended from March to April through the NHS, and we struck up a friendship quite quickly. She is working on a young adult fantasy novel and I offered to do some reviewing and editing for her whilst she worked on it. I was captivated by her writing and really enjoyed reading it as I was editing, but found that I was only able to do both for a short space of time. It got to the point where she would spend a fair amount of time doing more writing and re-writing that the document that I had to review was no longer current. She had given me the memory stick again and it has just sat in my laptop bag, untouched, for several weeks. I gave it back to her yesterday (after a frantic search because it wasn’t in the part of my laptop bag that I thought I had left it in!) and apologised profusely that I hadn’t done any more reviewing or editing on it. Izzie is so lovely and said it was really okay, but I still felt bad. I told her that before she wants to submit it to give it to me with a deadline, and that whatever I get done prior to that deadline will be however much I actually do. I really think she’s got amazing potential and I hope someone will want to publish it for her.
Hell, even WRITING, something that I thoroughly enjoy, has been hit by this regression cloud. It categorically should not have taken me nearly FOUR MONTHS to write this flippin’ blog, but here we are on the 1st of August and I’m only getting it finished and published now. I’m hoping that this will knock me out of the funk that I’ve been in…
I have always been one to do too much to prove that I’m not lazy and to overcompensate when I feel like I could be misconstrued as such. Now that I understand that there is an explanation behind my reduced energy levels, recognise what autistic burnout is and how it presents in me, I’m hoping that I’ll be able to move forward in a more positive way. I will do my best to do more that makes me happy and less of what drains me and makes me miserable.
Thanks for sticking with me during this whinge and moan. 🙂 🌸
...i am my own experience... 
– a quiet voice of empathy –
that sounds like a horrific time, I’m not surprised it overloaded you til you no longer have any reserves left for day to day.
can I just send you a big kitteny hug and an armful of gentle soothing recharge x
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That’s very kind of you; thank you so much. 😊🌸
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I understand every word of this, and I am so glad you wrote it. It lets me know I am not alone in experiencing this scenario, but also so I could tell you that you aren’t alone. Classic cognitive inflexibility! Having the vocabulary to help us understand what is happening doesn’t mean we will get it “right” all the time, but it sure does help us to be mindful of our triggers and reactions, and also to reach out for help from those who support us. xoxo
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Your writing this and the comments here have helped me put concepts to what has happened to me.
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Thank you for taking the time to write this. Other than gender, this could be me.
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Thank you for sharing this: I recognise just about everything you describe from my own experiences of Burnout & Regression and it’s heartening to know one is not alone. Post-diagnosis I have changed the way I approach a lot of things and have found work-arounds that mean I can now, a couple of years down the line, do most of the stuff I like but in my own way. So take heart! I get someone to help me clean the house though. And I ALWAYS wear earplugs in the supermarket! x
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Reading this really helped me. I realise I am in a period like this at the moment after a tough couple of years. I am undiagnosed, but certain (having been through the process with our 12 year old son.. I say been through, we are finally hearing this week about him). I’ve always suffered from recurrent bouts of depression but to know why and potentially have the strategies to head them off in future is amazing to me. It’s certainly a learning curve though, isn’t it? Years of coping and ‘pretending to be normal’ exchanged for understanding oneself.
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Wow! So glad GRASP (reco’d by Autism Tennessee) posted Your blog. Will try to subscribe. First of all…prayers for you.
Recently diagnosed age 60. “Chronic Fatigue” type issues all my life. I like your terminology better – Autistic Burnout and Regression. Actually had to leave work place after 40 years several years ago due to it. Believe health issues make it much more difficult to overcompensate the autism – not nearly enough energy to do both at the same time.
May I suggest that you get your B12 tested at the cellular level, not just serum, which is standard? Also, your Vitamin D3. Maybe even your iodine level and comprehensive thyroid panel, neither of which seem to be standard where I live.
So sorry that the angry parent scapegoated you. Seems to be an ongoing phenomenon in my life, especially when my energy levels are flagging, and less likely to be able to stand up for myself. Wolves usually go after the most vulnerable. All the best to you!!!
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I can definitely relate to all of this. xx
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Thank you for writing this, I’m going through pretty much the same and not for the first time, though it is the first time that I at least know it is likely autistic burnout. I’ve been meaning to write a blog post on the subject for several months but haven’t even got as far as the title. I also have multiple almost finished blog posts to finish and publish but that’s but my usual level of executive dysfunction.
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OMG, that is everything in a nutshell. I am still awaiting diagnosis, but having changed job a year ago I am still in this stage where most other activities are simply too hard to contemplate. Fortunately things are getting a little easier with the new job and we may be over that ‘you don’t quite fit’ hump. The cloak of normality I wear has been getting heavier everyday with everything I don’t quite understand and every mistake I make.
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Thank you so much for this. So few people get overload and the sense of absolute panic that it can bring.
I remember once when I was in a yoga class and, because I was completely exhausted, began to have an anxiety attack. I went to roll up my mat and the instructor walked in; it was too late for me to leave the class. So I muddled through, and had to go to bed for the next few days to recover from the exhaustion.
I was diagnosed with ME way back when, but now know it to be AE. So much time lost. So many years lost.
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I think this is how a lot of people get diagnosed. I was doing a lot of overtime in a workplace with lots of conflict and I just ended up completely exhausted and suicidal I quit and stayed home in bed in the dark for months and now I just never want to leave the house or talk to anyone or do anything even thinking about it is exhausting and I just wonder how long it takes to get out of it or if there is anything you can do. I think the longer I avoid things the scarier they’ll become I tried a couple of temp jobs and just ended up leaving and having breakdowns about being a loser now I’m too scared to get a job anywhere but I don’t feel like it’s justified I just feel like I’m lazy and taking advantage of my spouse who is working full time.
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Can I just say that this just made me cry.
I have been in the MH system for other things for years and had always felt my diagnoses didn’t fully capture / explain it all?
By chance I took aspie / neuro divergent test just for fun but was very intrigued by the results. Moving forward from that I had an ASD screening test and hit 10/10 and am now on the waiting list to get tested.
I have been very reluctant to look too deep into autism for fear of colouring my behaviour before the test??
BUT…
Reading this post, omg in one way it made me feel tearful (The kind of relief tearful)
It also made me feel pieced back together???
You have explained things that I feel and do, I have had no language to convey these things but here they are. I don’t don’t don’t want to say to myself ‘yup, that settles it’ but how I feel about this lends even more weight to maybe after all this time it was undiagnosed :I
Maybe after all this time I’ve been in constant burnout because I never had the chance to unmask, it has made me so isolated.
Maybe I’m not an alien after all??
Thank you so much for posting this, what you postponed for a long time and maybe felt wasn’t worth publishing…. is just the thing I needed to read.
Also cool name !! Sakura !!
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My sonhas regressed to a point where he can no longer dress or get out of bed ( he used to go to work and drive ) he thinks people are making his life hard on purpose ( paranoia? )his mental health team are no help and he has been on depression tablets that change every 6 months and dont help. What can I do?
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I hope you got your diagnosis 🙂 I have to admit I laughed a little in recognition – don’t want to read up before in order not to colour your behavior is pretty classic autistic to me. For years I thought I could not have Asperger’s because I didn’t have a special interest (I do now but that’s after getting diagnosed). Good luck ❤
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wow what a quagmire of emotions and thoughts one has to go through let alone the awareness to spot the things that can drag someone down to a rock bottom when mentally getting burned out its the sheer cascading overloads that adds to feeling uselessness and at a lost
im thankful for this blog when things have been put in a clear prespective it helps to clear the mind when everything gets jumbled up and confused by to much overload
well i hope you all the best on the journey piecing your world back together
im relieved theres someone who managed to speakout about the effects of burnout and what it does to someone i wounldnt be able to speak so eloquently about it.
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