What a week.
So this week my partner and I had to shelter in place. It’s not been great.
I didn’t realise how much I needed to be outside. Since, at least in mainstream culture, the use of the term “freedom” has often stood for “the freedom of the strong to destroy the vulnerable” (see the different parties “for Freedom” in Europe), I felt that the term itself was besmirched. But going outside after 8 days inside was revelatory. The world was overwhelming. There was so much noise and colour. The air tasted different. My body and my brain were not going at the same speed. It was joyful. It was also too much. The sense of freedom, feeling the wind and seeing the trees through only my own glasses, was like breathing after a deep dive. I now get why many autistics are allowed to go for walks, even during lockdowns. Freedom to roam in the world should be a right. Being locked in is torture, especially for autistic people. This is ironic given the name for who we are come from ‘autos‘, self – as in, self-contained, solitary. Some of us are extroverts, some of us are introverts; but all of us need the sky and we need to roam free. If we are constantly locking ourselves away, that is because we are forced to, not because we enjoy it.
While I was in isolation, I struggled to keep focus. I lacked the clarity to write my diary, then beat myself up for not doing so. I lacked the energy to exercise, then beat myself up for not having it. I constantly checked myself; how was I feeling? What does this cough mean? Am I getting better or worse? What’s my temperature?
Hals of the issue is the fear, the not-knowing. Whether I actually had the virus or not. Seeing myself not recover at the speed I want to. Seeing my partner, on antibiotics for an ear infection, recover at lightning speed. At ll hours, I was checking the way Covid develops as a disease. It wasn’t till day 7 that I was confident I didn’t have Covid, as that is the day people are usually sent to hospital.
Could I have died? Yes. Far be it from me to amplify a Tory, but in parliament Dame Cheryl Gillan made a point of order asking the government to support autistic young people with a vaccine. She said autistic young people are six times more likely to die of Covid than our neurotypical peers. The way anaesthetics work with me is not understood. An accidental overdose could have done it.
I’m not trying to get sympathy points here. It’s important to keep on stating that autistic people aren’t valued in the same way as neurotypicals. Health inequalities are real and austerity has made everything even worse than it was a decade ago – a universe away from where we should have been. It isn’t just a case of health care. An autistic boy with PDA profile was killed a week ago in Reading, where we live. By children his own age. He was 13. The movement against vaccines is one that specifically targets us. In the culture we live, our lives are disposable. That will not just change when a better political party gets into pow or if more #actuallyautistic people become powerful in the fields of politics or culture. It would help, but it won’t be enough. We need a paradigm shift that’s worldwide, cultural and economic. That’ll take time.
Another issue is the powerlessness. Thousands of people are dying unnecessarily every day and it feels wrong to sit on my hands while that is happening. That the best we can do is to sit tight and do nothing. It feels like a cop-out, an excuse. But that really is the best we can do. It doesn’t make me feel better. But sometimes that is the consequences of actions taken by others, who were willing to take the risk people’s lives by claiming a false dichotomy between a working economy and human life. It is also the responsibility of those who voted for them.
I want to share something about a topic that I was told about last year by an autistic friend with ADHD: rejection-sensitive dysphoria. A sense of powerlessness and deep feelings of pain at being rejected. The harshness of this feeling is overwhelming, not just to ourselves, but to others. It is not in and of itself a depressive symptom (more on autistic depression here: https://jorikmol.com/autistic-in-times-of-covid-19-sunday-26th-july-back-in-the-game-on-depression-1/ ) or a so-called depression attack (see my blog two weeks ago: https://jorikmol.com/sunday-13th-december-2020-bad-news-and-resilience/ ), but something else. An emotion that is overwhelming and can manifest in variable ways. It is also understudied and present in different ways in people with other neurodivergences. It certainly intersects/is comorbid with autism, mental illnesses and PTSD.
I’ll take myself as an example. Right now, professionally, things are frozen. I had an interview on Friday, which I thought went very well, but yesterday I heard I had not been chosen. I’m currently working through that. I’ve had phone calls with agencies that engage in training for SEN staff, who were very interested in me training their staff and new recruits. Unfortunately, until it’s real, there’s nothing much I can do but keep twiddling my thumbs, hoping something will come along. People can be kind and tell me how excited they would be to work with me, but afterwards, I need to take a step back. Intentions are not reality, I cannot rely on anyone but myself in this business. Instead, expressions of interest are nothing more than kind words, compliments, that should dissipate when I put down the phone. If not, I will feel like I somehow failed when no work manifests itself. But even then, I have no work coming in.
Today I felt useless after hearing yesterday that Friday’s interview had failed. It doesn’t matter how often I tell myself that a job interview is barely about me. If someone gets chosen, that is because they are the right place at the right time. If I don’t get chosen, unless I really messed up during the interview, that is also 99% out of my hands. That’s the great cruelty: you don’t get the job that you prepared hard for, but you also had barely anything to do with why you didn’t get selected. What’s left is a sense of emptiness. Cyclical thoughts, about how I don’t deserve a job or an income at all (I’m still not sure how much Universal Credit is going to be on the day I am supposed to start receiving it). I feel useless and talentless.
On Friday, I also spoke to an agency about supporting a local Autistic school with Covid testing. But the woman who phoned me was sitting next to a blaring soundsystem. It was physically painful. I asked her several times to turn off the music because it was hurting me. She said: “I have no idea what you’re talking about. Maybe there’s music playing at your end?” I was in pain and finished the call politely saying that I’d rather not risk getting in trouble with Universal Credit for 6 hours a week, at the mercy of SEN teachers and staff who could get angry with me for being an obstacle that asks them to get tested every Monday. That was part of it, but the real reason was that she lied to my face and pretended I was to blame. It was gaslighting. Minor, and absolutely normal for neurotypicals to employ when they do something wrong, but not a trait that makes me feel safe in a professional relationship. I sent an email asking to no longer contact me. The woman apologised. I just blocked. It was the blaring loud music and the gaslighting that sucked out the joy I’d just felt from knowing we were free of Covid and having given a good interview. I felt like a failure for missing out on a job, as unhealthy for me as it would be.
My partner tells me that it’s the worst job market since the 1930s. He’s not wrong. He also says that capitalism is not about allocating the jobs to those who need it or are most capable. I agree with both points intellectually, but emotionally, those feel like cop-outs. Note: I only feel like that about myself, not others. I’m the first person to offer love and support, when someone else is in my position. But regarding myself, it feels like I’ve failed at keeping my innate need for failure at bay. Somehow, because of who I am and who my father was, I feel that failure clings to me like blood.
Still, not hearing back from potential employers or agents makes me feel even worse than being rejected. I’d rather know and mourn what could have been. The response should never be to stop trying. Because I feel rejected even if I don’t try. If I don’t apply for jobs, I feel lazy and cowardly on top of feeling useless and talentless. The only way for my rejection-sensitive dysphoria not to trigger is by getting everything I attempt right, at the first go. When I have any form of success, the joy is short-lived and quickly morphs to a constant anxiety: don’t fuck it up.
Brought together, that makes me a pretty high-strung person, especially in a new job. Because of previous failures, I want to do things right so badly, that I get other things wrong by overfocussing. It also pushes people away, hard. When people understand that I am in pain because I fear upsetting others or making the slightest mistake, they try to ‘help’ by saying things aren’t as bad as I make them out to be – at the same time they are saying my reaction is inappropriate. I then get upset with myself for falling into the same negative spiral again. The other person then runs out of patience and gets rid of me. I am a “lost cause”. They apologise, wipe their hands and ask me to leave. I lose the job. Things get even worse.
I know that’s no way to live. You don’t have to tell me. But that’s the way my brain works. I feel pain, hard. To the best of my knowledge, I will keep on feeling it for the rest of my life, hard, with everything I attempt and don’t attempt. There is no professional field in which I can safeguard myself from this periodic ache. As much as I’d like to, trying to change that won’t help. Therefore, rejection-sensitive dysphoria is not something to combat, but to live with.
So if this is the case, how on earth did I manage to teach in the same school for three years? Well, it’s different for everyone and may differ within the same person, even on the same day. Basically, I need be alone. Then, I need to get the excess energy out, by screaming, beating up a pillow or jumping up and down. Sometimes a good workout helps. Swimming is even better. Another way is positive sensory input: a deep hug, a feather to my skin or the tips of my partner’s fingers against my spine. Then, rest. If I manage to keep my job after a few of these happen, I’m your number one employee. At the back of my mind, I will still be terrified of losing my job (because of the world we live in) but 95% of the time, I manage to not trigger my rejection-sensitive dysphoria. I need to eat right, sleep well and exercise. I need to read, write and play video games. I need to be outside at least once a day and I need cuddles, friendship and intimacy.
I don’t want to pretend to be optimistic, or romanticise pain – there is nothing romantic about suffering. It would have made my life 100,000 times easier if it wasn’t there. But it is. I will have to fight for everything, and when I get beaten down, I go down hard. There is also nothing that will make getting back up easier, even after many a defeat. But that’s the way it is. Like being locked down in your own flat because of a virus, you can’t change certain things. This is one of those.
Talking about it helps me feel better, but it won’t cure me. I will get hit just as hard. The best I can do is find ways to punish myself less when it happens.
What are your experiences with rejection-sensitive dysphoria? Are you a clinician or researcher and interested in sharing your thoughts? Am I full of shit (see, there’s the doubt creeping in already X-D)?
Much strength to every one of you, I’ll see you next week.
P.S. Here is the personalisation of rejection-sensitive dysphoria. His name is Bumble and his sound is a shriek.