Yes, another Monday blog. This is for the same reason as two weeks ago. I was totally out cold yesterday, needing a third full day of rest in a row. I had been able to function brilliantly well on Monday, Tuesday, Wednesday and Thursday – until the Autistic League meeting was over. I crashed, hard. I was totally incapable of doing anything at all on Friday, did the washing and cleaned the kitchen on Saturday, but Sunday I was agitated and frustrated at having fewer spoons than I did the day before.
This is pretty typical for me. As I said last week, my greatest weakness is my anger at myself for not being at 100% at all times. This comes from growing up at a time and place where being autistic was seen as an imposition on other people. Me existing, as someone who was different to the norm, was at best irritating and at worst an excuse for violence and abuse. That’s nothing new, everyone in the autistic community has scores of stories to tell about exactly how they were victimised for existing. It’s also not a surprise that so many of us are traumatised and have diagnoses of PTSD or Complex PTSD (I got my own diagnosis of CPTSD in January this year).
What I’m learning is that if I struggle with getting up, standing or moving, that I just need total rest. I am not lazy, arrogant, useless or a waste of oxygen, I am just exhausted and need recovery time. I have been a lot better this week at just allowing myself to crash and take as much time as I need to get better.
Yesterday, I was organising my meds for the next two weeks when I was shocked to find a strip of mirtazapine in the sertraline box. There were only a few empty slots, but I was worried all day that I’d accidentally taken mirtazapine instead of sertraline for a few days, just because I couldn’t remember whether I’d been taking orange or white pills in the morning. Now, a day later and feeling a lot more stable; I know that I hadn’t. I can even remember what my morning pills looked like yesterday, something I couldn’t yesterday morning. I needed full rest. In the afternoon I was sick, twice. My partner ended up cooking for me, because he’s wonderful.
Anyway, onto the topic for this week. TW: medical interventions, medical errors, deaths, vomiting, eating disorders.
I’ve got chapped lips right now, in two places. When my lips are chapped, that means I’ve been working myself too hard. My personal trainer said that this is due to an overabundance of cortisol in my system. Cortisol is a stress hormone that the body makes in order to deal with high-intensity situations. For me, that includes working myself too hard (which, as you know, is kind of my brand).
The other cortisol triggers I get are physical exercise, emotional situations such as misunderstandings, bad days with anxiety and/or depression, meltdowns and sensory overload and good-old frustration. Since learning more about myself and being autistic, my chapped lips are a sign from my body to stop and rest. When I was younger I thought I just had herpes and pushed on regardless, to the point of getting migraines or being physically ill. I usually only get chapped lips in one place, not two, but this is quite a stressful period for my body, taking another step down with the quietiapine on Tuesday night (no you’re a model!) and having a long, super-productive day on Thursday.
Autistic bodies are usually not considered different from neurotypical ones, a result of autism being considered a mental or brain “disorder”. The fact is, however, that autism is a neurological difference and our neurology is fundamental to not just our brains, but our bodies too. Therefore, our bodies are built in ways neurotypicals’ aren’t. That may be beneficial, our greater neuroplasticity in later life may protect us from Alzheimer’s and other neurodegenerative conditions. But in many cases, we are more likely to have physical health issues that are not prevalent in the non-autistic community. One of those is Ehlers-Danlos Syndrome, a disease of the connective tissues that often appears with (or, in clinical language, is comorbid) with autism. This disease can come with hypermobility of joints and can lead to severe injury and constant pain.
That, so far, is kind of it. Autistic bodies are seriously under-researched with obvious consequences to the lives of the community. I have been pushing for research to be done on autistic people’s bodies since I became an activist. The rest of what I’m going to describe is my own anecdotal testimony. If you have physical issues that come with your autism, please add them in the comments!
I’ve always had a bad relationship with anaesthetics. When I was four and had my tonsils removed, I woke up in the middle of the operation. When I was sixteen, I had to have a medically-required circumcision. Because of the previous experience, I chose to have local anaesthetic. It didn’t work. I was in so much pain, I begged for to be put under full. When I woke up, my mother said, I was screaming blue murder at the nurse who was helping me. I cannot remember that, but I do remember being very stoned afterwards.
In 2018, my streak of excellent dental hygiene came to an end and I had to have a filling. I was injected with lidocaine in my gums. I got very woozy, coming close to losing consciousness. I was given sugar water and told to not skip breakfast the next time. I woozily went to Wetherspoons. The next time, a few months later, I had had breakfast, the same thing happened, only worse. I had no idea what happened, neither did the dentist. I was told it might be anxiety.
This, unfortunately, is what happens to a lot of us. I have never been afraid of the dentist, I had braces for three years, I had all my wisdom teeth removed. The truth is, I take to anaesthetics weirdly. Most recently, I had a gastroscopy that had to be delayed due to my blood pressure tumbling after pre-anaesthetics. When I had the actual procedure in March, I was given a mix of benzos and fentanyl to numb my throat. I lost consciousness. That was not supposed to happen, but the doctor was there and carried out the procedure.
These unexpected outcomes can be even more serious. The term ‘accidental deaths’ is used constantly to refer to autistic people dying whilst receiving medical attention. The equivalent is medieval doctors bloodletting patients with fevers and being surprised that they then die. The reason is the same: lack of research. I am not the only person who medical science simply doesn’t get. When at the House of Commons in March 2019 I spoke to a research psychiatrist about my issue, she said “all we know is that autistic people have highly ideosyncratic outcomes”. In layman’s terms: we don’t know. There are too many variables and not enough consistencies.
The reason for the gastroscopy was that I developed a problem with vomiting. Or, rather, regurgitation. Now I know that if I’m out of spoons, I will just start being sick for no discernible reason. I have had body image issues and problems with binge eating, but in December 2018, I just couldn’t stop being sick. I couldn’t keep down liquid (including pepto-bismol) and started throwing up blood. I was in A&E for 10 hours. Nobody knew what was wrong with me, I was given IV drips of fluids and salt. I was in a state of meltdown/shutdown throughout the first 8 hours.† At about 11pm, I was able to discern that it might just be exhaustion. Without a better idea of what to do, my A&E doctor accepted my theory and sent me home when I was able to drink small sips of water.
I was concerned I had a stomach problem, such as a permanent infection, an ulcer or, worse, a cancerous growth. I had lost so much weight in the past few years and my stomach had shrunk, there might have been a problem there. Hence the gastroscopy. Luckily, I was all-clear but some white spots on the mouth of the stomach that were immediately removed. I was lucky, many autistics struggle expressing their bodily symptoms in language understandable to NT medics. I only struggle when in meltdown, shutdown or exhaustion. Many autistic die because they don’t know how to express or even feel pain (listen to Jamie Knight’s story about physical illness here: https://www.bbc.co.uk/programmes/p08cfzvv)
Some researchers have tried to do double-blind trials with autistic people but struggled to get this done. The idea of ‘do no harm’ is vital to medical science. But by doing nothing, the harm increases and our community has drastically reduced life expectancies compared to the neurotypical norm. I saw an amazing post on Instagram, while my brain was fried. I think it was from an autistic researcher, talking about the frustration they felt from being told to “remove outliers” from the sample set. They wrote: “but that outlier is probably like me”. Too right.*
I am part of Autistica’s Insight Group and am on two steering groups for research. As part of the Autistic League, I am also pushing for more research. Please comment and let me know via email how your autistic body affects you and what you would like me to push for regarding research to save autistic lives.
So that’s it for this week, I have six days of daybook writing to catch up on, some Japanese to learn, tutoring to do and then I’ll rest. I need time to de-cortisol my beautiful face.
Anyway, here’s some final bits and pieces:
A week ago, I wrote to my local MP and got an email back! This due to the fact that my work is hugely affected by the drop in students and I’ll struggle to find replacement employment as my current job has been amazing at accommodating me. There aren’t a lot of those around. So please, share these blogs around, as I need the work. Richard Maguire from Autism Live has added a lovely quote to my Recommendations-tab. Find Richard and Julie here: https://www.autismlivetraining.com
Also, a year ago was Oxford LGBTQ+ Pride. I am stallholding with the Autistic League on September 30th, if that goes ahead. We’ll see. If not, we’ll be there in 2021.
Page 25 has a short interview with me on it, from when I was still working for Oxford Health. This is aimed at neurotypical health practitioners.
*If you can find the post, please send it to me, I’ll link it here.
† At least I wasn’t held in A&E with security personel, like what happened six months previous when I had a huge meltdown. Let me know if you’d like me to talk about this too.