CW: discussions of trauma and self-harm, as well as an autistic person being a bit of a moron. If that’s too much, then have a look at my bed in our wonderful new house! Category is: Passport says 33, but you’re secretly five.
It’s been a hot minute since my last blog. I’m really sorry about that. You saw how much I worked in May, June and July. It all went a bit mad and I was pushing to the point of burnout. I was writing blogs every week, some of them with a lot of research attached to them. I was doing talks and activism work. I was putting myself out there constantly. This combined with tutoring full-time and all the associated admin. I was looking for a new flat in Bath and I was preparing for an EAP role at University of the Creative Arts over the summer. I’d had my second meeting with my mentor for Teeming and I’d done a lot of preparation for that as well. I In fact, after a super hectic spring season, I was looking forward to a summer that was a lot less intense, with a lot more writing and a lot less work. How wrong I was.
The EAP role was actually pulled forward a week due to a miscommunication about the start date. That meant that the induction week was happening while I was still tutoring full-time. This happens all the time in the professional world, not a problem, I would just deal with that. It did mean that this week in particular was pretty heavily stacked. The weekend before, I attended a series of leftie political meetings which my friend was moderating. I had meetings with Stonewall and Oxford Labour, the Autistica Research Conference, panels for academic work I’m on the board of, and, since I’d just paid for personal training, 5 gym/swim workouts a week all in the middle of that, PLUS the panel on disability allyship for Euromoney’s Avid group. That combined with, you know, eating, shopping, cleaning, being there for my partner who was finding his job quite stressful. It was a lot.
The first week, I wasn’t 100% sure how much time I should invest into the course I was teaching. I tried way too hard, pushed way too much. Those first three weeks, where I should have worked about 6 hours a day, I worked more like 10. Add to that the few hours of tuition I was still doing and couldn’t cancel and the amazing opportunity I was given, being one of 4 hosts for Autscape; it was too much. By the end of the third week, I was burned out. I was sleeping badly, got a cold, was constantly berating myself for not getting enough done. We were waiting to have full confirmation from my partner’s work that he could definitely work from Bath and if he needed to be present, he could go to the Bristol office (he had already been given several unofficial confirmations over the past 4 months, but the actual meeting kept getting delayed). I was able to use my one day off (Friday) to go to Bath and view flats. I was already exhausted, but spent the day cycling around the city, trying to find a place to live. I found a beautiful house in southern Bath and I wanted to immediately move in.
Having come home, I was exhausted but excited. I showed my partner the photos and he loved the exact same house. Then he casually dropped in that his work had said he needed to travel to the Reading office 3 times a week from the moment we moved. That broke me. I was incensed. The only reason I had initially agreed to move to Bath was because they had given him confirmation that he could go. My partner had been just as surprised, since it appeared that his supervisor had simply forgotten about it and just said that they’d be expecting him in 3 times a week either which way. But he is incredibly emotionally resilient and is able to be so flexible as to simply accept whatever he’s given. It’s a very healthy way to live, but it does mean he puts up with a lot of bad behaviour from people who are able to take advantage of him.
That was really when I started to go insane. I was pushing myself so hard that I fell off a cliff, but still I kept on going. I would have full bedrest during the weekend, as well as Autscape hosting duties. By Tuesday, I went completely insane.
I’ve been nervous to express this, but I have a problem with internet porn. I use it when I’m emotionally exhausted, in order to kick myself into being productive. It’s chemical; the adrenaline keeps me moving forward. It’s like when I was young. I couldn’t go to school because I was sick and burned out. Instead, I took a Berocca and kept going. Whatever happens, just keep going. It was a misunderstanding of what my mother meant with ‘keep going’ after my father’s death. I took it literally. I took it to mean that I should never need rest and always be productive. If I am exhausted, that is laziness. That’s not the way she meant it, like, at all. But at the time, I hated my autism and I saw tiredness as weakness. Burnout was failure.
Internet porn kicked me into being productive. I can talk about this now, after having had therapy about it (in fact, I’m starting again on Monday). It’s self-harm. I would look obsessively at images and organise them. My body goes numb, I am absent. I don’t enjoy it sexually at all. What I get out of it is a state of dissociation. Time disappears. I am not present in my own body. Instead, my heart pounds in the centre of my chest and the rest of my body feels nothing. All I feel is a very distinct kind of fear, like I’m being hunted. I would lose hours doing this. I have the taste of iron in my mouth, which if you’ve got a phobic anxiety, you’ll recognise. It isn’t pretty. I never use porn because I want to. It’s because I’m too exhausted to think and dissociate. By the way, I’m feeling very uncomfortable writing this, so I’ll leave it for now, to discuss further at another time.
Wednesday 28th July 2021
So on Tuesday night, I was so exhausted after a 9 hour day, a workout, a tutoring session I couldn’t cancel, Autscape and doing the admin around the house move, I went on a three hour porn binge. I told my partner about it and he was frustrated that it had been happening again. I felt like a monster, a view he very much didn’t share.
I woke up at 5, trying to install a blocker on my phone. I had made my partner breakfast and was ready to ask him to install the blocker. It didn’t work, because in my exhaustion, I hadn’t modified the phone to actually block anything. “Well then, tell me when you’re feeling like it might happen, and I’ll take the devices away from you,” he said.
“That’s exactly the problem! I dissociate, I’m not aware of when it will happen or not.”
For a moment, he lost it. “Oh, fine, then I don’t fucking know.”
I had a meltdown. A bad one. He’d immediately apologised, but it hadn’t mattered. I was scum and needed to suffer. He needed to be calling in for work and phoned a mental health helpline to talk to me since he was busy with work.
The mental health helpline did not help. The person on the phone was not able to deal with me in meltdown, when I use everything someone else says to help me as a means of punishing myself. When she said: “I’m sorry sir, but you’re interrupting me,” I hit myself for daring to interrupt her. She hung up the phone. I called my friend Oskar, who’s a trainee psychiatrist. He was amazing. During our conversation, I felt the need to jump into the river. I didn’t, though. Then the doorbell rang. It was the police.
I held out my hands to be arrested, for what I wasn’t sure, but that didn’t matter. I deserved punishment for having a meltdown this bad. The police, actually, were incredible. They were wonderfully empathic, which was unfortunate for someone who believes that, as an institution, all cops are bastards. The woman who spoke to me would be an amazing mental health professional. She didn’t think I was a monster and talked me down. They proposed to take us to the hospital for a mental health evaluation.
My partner had to say to his work that he needed to support me and that he’d be away from his desk for a few hours. They took that very badly. But my needs, as much as I despised it at the time, came first. The police drove us to the hospital. There, things only got worse. I was incredibly vulnerable to light and noise, both of which overwhelmed me. The A&E door banged every time it opened. I had to re-explain everything to every professional we saw: the triage nurse, the examining doctor and, then, after over an hour’s wait, the psychiatrist.
What follows is a direct transcription of the text I sent to Berkshire Health NHS Foundation Trust, when they sent their ‘how was your service’-text a day later.
“The mental health professional who was sent to assess me clearly had never seen an autistic person before. Let alone two. She looked at me disdainfully and had absolutely no idea what to do with me. My partner, who’s also autistic, also got upset. He needed some time out. Instead he was upbraided for my loudness and was told he was “being aggressive” when he was stimming. Moreover, the mental health professional did not know about the therapies I’d had, including dialectical and CAT nor did she have an understanding of sensory divergence. When I’d said that I’d had CAT, she asked if I’d ever had talking therapies. Erm, yes. I thought at the time she was a psychiatrist, so she really should know. She seemed to not have read the notes from the police, the A&E doctor, the health assistant or the triage nurse either. No knowledge of prior medication, therapies or diagnoses. Nothing. The trainee nurse by her side looked kind but didn’t speak or act at all. The mental health assessor (she was no psychiatrist, I hope) even asked: “what was your expectation of what we could do?” My partner and I said that, well, we hoped she could help with that. We don’t know, that’s why it’s called a crisis. This did not please her, which triggered rejection-sensitive dysphoria in me and I had another meltdown. She said all she could do was either prescribe more medication or contact talking therapies. My partner said he was sorry but that he was really disappointed. That wasn’t valued at all. The behaviour of the staff at the hospital, with the exception of the doctor examining before assessment, the reception staff and the health care assistant was overwhelmingly poor.
“My partner was shocked at how poor things were. The police were better trained on mental health responses than anyone at Berkshire Health. There were only a few ways this could have gone worse, including arrest or restraint.* The department would fail every part of the CCF†, apart from the very kind and helpful provision of a de-escalation room, which we were told to leave because “someone else is coming.” The A&E doctor who examined me knows more about autism than the mental health team. Which is seriously concerning, as suicide is the number 2 cause of death in our community.”
Yeah it was bad. My partner was incredibly angry, though not with me. He’d never been treated like that. Even worse, he now understood how I have been treated by the medical system thus far. I told him he was lucky to be so mentally healthy, because this is the norm for people like us.
We got home by taxi, after being rained on, waiting outside for ages. The assessing psychiatrist came to have a look. They were utterly baffled by what had happened, my partner said in no uncertain terms that their behaviour towards us had been unacceptable, but neither of us remember what he said exactly.
Two days later, I checked in with my GP, to see what he thought about everything. He… hadn’t heard from anyone. There was no follow-up from the police, A&E or psychological services; nothing. This can’t be legal, frankly, though they might hide behind a misunderstanding of GDPR. When an autistic person has an experience like this that could impact their health, the least services can do is contact the GP. In fact, that is the norm with all NHS services. Why not now? I have also heard nothing from Berkshire Health NHS Foundation Trust after my review and the training opportunities for local police services fell through because I’ve moved house. It’s a shame. My experience is common in our community and I would love to provide education following on from my lived experience. But maybe there will be people in the West of England that are interested in learning how to do this work better.
Looking back, nearly two months later, I’m surprised how quickly I “recovered”, or, at least, how I was able to be productive again. I had a full day off on that Wednesday, was able (somehow) to teach on Thursday. Afterwards, my supervisor told me to not work for 72 hours and have bedrest. This was vital. My partner was with his parents and I had the house to myself. After that, I managed somehow to finish teaching the course, go see people in Farnham on the final day of teaching and move house. This last week is the first one where I’ve been able to take stock, and, frankly, I can’t really believe that I survived this, again! Looking back from today, I’m surprised I was even vaguely functional at all. I should have had a 6 week depressive episode, like I did in 2020. But I didn’t. I got through it. Now we live in a gorgeous house in Bath. We haven’t even fully unpacked yet, but we’re home.
What have I learned? I have learned that I need to have more rest and less work. I have been working far too hard over the past 5 months. I put myself in situations where I was over-stimulated and underslept. The flat I lived in was next to a busy road, which stopped me from sleeping as well as I should have. I beat myself up for not exercising enough when I was probably over-exercising. I really struggled with the heat in July, too. The world was just too much.
How should I do this again next time? Firstly, make sure to have less work. I have more money now, but my life shouldn’t be about flip-flopping between hyper-productivity and burnout. I have decided to limit my teaching hours as best as possible. I don’t want roles where I’ve got lots of NT colleagues anymore, so I have to constantly switch codes and present an NT-adjacent caricature of what they don’t even realise they want me to be. When I am myself around neurotypicals, I am in danger. If you still think I should just ‘be myself’ in professional and social contexts, again, please watch Asperger’s From The Inside’s video on ‘unmasking’.
People often ask what they should do when they see an autistic person in meltdown. The answer is: don’t let them get that far. Prevention is better than anything else. If I am in meltdown, there has been a very large amount of things that have gone wrong to push me over the edge. That’s not unique to autistics, of course; neurotypicals can have meltdowns too, after all. But there are differences for autistics, their:
- a. frequency
- b. intensity
- c. basis in the sensory world
- d. recovery time.
a: Autistics are more likely to have frequent meltdowns due to the world just being ‘more’ to us. We get exhausted more easily. This is why I was constantly tired as a child and ate to compensate.
b. Our meltdowns are harsh and swift. We can’t always see them coming. Yesterday, I had forgotten to take my morning meds and was at the point of a huge meltdown, in public. But I was able to see it coming and chose to mentally step away. I’m 33 and I can sometimes do that now. But it’s highly uncommon that this happens and I hope it’ll happen more often.
c. I like to always say that with autistics, there is a difference not just in degree, but in kind. What I mean by that is, our brains function in a different way, so we experience the world’s intensity in a way that stacks and stacks, rather than a neurotypical’s brain which simply ignores vast parts of the sensory world.
d. If we have rest, sensory deprivation and time with our specific interests, then we can get through meltdowns relatively quickly. I did not speak for the rest of the day and by Thursday night, I was vaguely myself again. I was even able to continue teaching the course, this time with clearer delineations on what to do and what not to do.
What happens when I melt down? I get aggressive towards myself because I have been taught that meltdowns are bad. I also hate not being in control, that’s why I hate losing things; since, to me, at that moment, it’s indicative of a failure to already be organised. I am lazy and evil, therefore I deserve punishment. I was hitting and biting myself from a very early age.
For me, meltdowns are self-destructive. For others, they can be destructive towards other people or objects that are not themselves. However, this is also self-destructive, for obvious reasons.
Sensory overload is not the same as a meltdown. When you see someone in sensory pain, they probably need to not be in the place they’re at at the moment. Sensory pain can be expressed in several, highly personal ways. Sometimes the person is grasping their ears, rocking, shaking or becoming very quiet. Sometimes they won’t breathe in, because the smell is ‘too much’. Other times, people can become hyposensitive. That means that they are sensation-seeking, for instance by going to loud places and listening to loud music when they’re already tired. They need more input, in a similar way to me browsing on the internet endlessly. This can mean that they’ve hit a wall energy-wise and need something to keep them going. In each way, the outcome is the same: REST.
Rest is vital. We need it more than neurotypicals, that’s for sure. When I was in school, the exhausting parts were never the lessons. I preferred the lessons to the times that I was supposed to communicate with other children. I was always exhausted when I got home. Often I’d be so tired I couldn’t just cycle home, instead wandering around aimlessly in order to gain enough energy in any way I could. Usually, this would prefigure a meltdown. ††
The way this need for rest manifested itself was physical. I would just get ill. I was asthmatic at the time and I even got checked for Glandular Fever; I had apparently already had it. My body expressed its exhaustion in physical symptoms, as well as weight gain. It didn’t help that emotionally I was convinced I was not autistic and needed to live as unautistically as possible, with obvious results. Illness, especially frequent illness and constant colds, were indicative that something was draining me and I was internalising my meltdowns.
Is there a way to avoid rest? No. You can’t drink coffee (tried that, didn’t work), alcohol (check), energy drinks (my brother tried that, didn’t work) eat lots of food (check), exercise (check) or work (OH CHECK) your way out of it. It means, for me, quiet time. If your interests include Metal, like my partner, it could be going to a music festival, though you’ll need some rest from that as well, afterwards.
If you insist on inclusive schools, healthcare and workplaces, then we need to stop privileging neurotypicals over and above autistic and neurodivergent people. It requires a paradigm shift and an understanding that the very way the status quo operates is damaging to us. It may not be fun to you; it’s unliveable to us (unless you’re that rare breed, the Establishment Autie. For more information, see this video here: https://www.youtube.com/watch?v=O3Pq70RGlAw).
We have to change our environment to be better suited to all of us, not just neurotypicals. If you respond with ‘well, both sides have to give something’, that is either highly ignorant or you’re acting in bad faith. Autistic inclusion is not labour autistics need to do. If I have a cake and you do not, we don’t share the cake by each giving away some of the cake that we already have (you are, in this example, cakeless. Soz). The revolutionary labour of undoing centuries of racism, sexism and homophobia should not have to be done by the people still undergoing the discrimination that leads us to live worse lives. It should be done by those who are privileged and redistribute that privilege. Insist on neurodiversity-informed decision making and for autistic and neurodivergent people to be at the head of those changes.
If the lives we lived were more conducive to autistic people, then we wouldn’t burn out so much faster than our neurotypical peers. And even they burn out! In huge numbers. The world we live in is not conducive to human life, since it only serves to benefit those who already have resources. The best way to stop us having meltdowns, in short, is to end capitalism.
There we go. Didn’t think I’d end there, did you? Well, I did. Deal with it.
That being said, if you are looking for a consultant or speaker on neurodiversity and inclusion, please don’t hesitate to contact me.
Yes I went there as well.
I’ll see you next week. Love you lots.
* I have been restrained before and arrested once, when I was sectioned in 2017. I had a meltdown due to continuous vomiting in 2018. I was then put into isolation for three hours with a security guard present. He was irritated that he had to be there because I was clearly not able to be dangerous to anyone.
† The Core Competency Framework, which is the government framework for treatment of autistic and otherwise disabled people within government regulated sectors, such as the NHS, Education and social care. See here for more information: https://skillsforhealth.org.uk/info-hub/learning-disability-and-autism-frameworks-2019/
†† If I could have had home-schooling or a 3-2 school week, I would have far preferred that. I never understand the logic of forcing young people into schools when they would prefer not to be. I learned a lot from being around other people at school, but would I have made more progress academically and emotionally if I didn’t have the daily grind of being around people, especially noisy and smelly teenagers? That’s an unanswerable question. But if you or your child is struggling with being around other humans, drop a message in the comments, I’d love to talk.