Strong female character, p.21
Strong Female Character, page 21
‘It’s all arousal of the nervous system.’
Sue told me about spoon theory, which started as a way for sufferers of chronic illness to explain their limited energy levels to those around them but has since become popular as a way of explaining autistic energy levels to ourselves and those close to us. Embarrassingly, I took this literally, assuming it to be some sort of fixed currency that had the exact same values for everyone. I had to start realizing that the more I used all my spoons up, the more I was guaranteed to have a meltdown that day.
Things that drain my spoons are: noisy bars, fluorescent lighting, most conversations with fake people, work meetings. Things that increase them are: being alone, listening to music on my headphones, watching the same TV show for the millionth time, playing with my cats, smoking weed.*
‘What about walking?’ Sue said one day.
‘Um. I like walking, yeah.’
I wasn’t sure where she was going with this. I was pretty sure I mainly walked to lose weight.
‘It’s just that some people find the repetition of it can be helpful.’ I thought about this for a moment. I considered how much happier I was when I was working in Scotland because I walked everywhere at night and realized that the walking in itself was the thing. I thought of happy memories of times I’d left gigs at Battersea Arts Centre in south-west London on foot and walked all across south London to get home. I’d walked and walked and felt peace. The gigs themselves had been terrible but if I walked long enough it was like balm for my brain.
I took Sue’s advice and walked and walked, rubbing my fingers and thumbs together as I did so, flapping my hands, no longer caring if anyone thought it looked weird. Stimming wasn’t the gross thing I’d thought it was and anyway, no one in London cares or looks at what anyone does. Sure enough, the meltdowns subsided. I barely noticed until Conor texted me one day: ‘You’ve been really good lately. I’m proud of you.’
I also exercised regularly to prevent meltdowns but found that even too much of that actually caused them. Lifting very heavy weights, for example, can cause overload in the central nervous system. Of course, I thought to myself. I made the connection there and then that everything in my thinking towards meltdowns had to be related to the nervous system and sensory system. Excited by my experiment now, I started mixing up my exercise routine. I’d always despised yoga classes, with their competitive women and espousal of pseudo-spiritual woo and Eastern spirituality while the clientele wore £90 yoga pants. I scrapped the cynicism and started thinking of yoga as moving meditation and preventative treatment for meltdowns. This shift in perspective helped and the frequency and severity of the meltdowns reduced yet again.
I joined CrossFit, reasoning I’d love it as it involved intensive sessions of weightlifting every day and I liked weightlifting. I hated it more than any exercise since school. My coordination was worse than normal and for the first time in years I fell over when I was doing lifts. I started to dread attending, to dread scripting my hello to the chirpy woman on the desk as I entered, to dread talking to the manic type-A people who loved box jumps and high-fiving after endless burpees. Then I realized: most people loved the community aspect of CrossFit. They loved the group element. If I’d learned anything about myself in the year since being diagnosed it was that I don’t do well in communities. Socializing while at a gym was pointlessly draining energy that could be better used elsewhere. I went to the gym primarily to build up my energy, so it was counter-intuitive to go to a gym environment with excessive noise or social demands when I could spend that energy on the workout itself.
When you have a nervous system that’s in a state of hyperarousal, muscles that stiffen into knots every week and lungs that breathe shallowly every day, you start viewing exercise as a necessity. I stopped viewing yoga as crap pretend exercise and started seeing it as something I needed to regulate my breathing, to force a mind–body connection where alexithymia had left me numb. I viewed intense exercise as a way of putting fake stress on my body so it could better cope with the very real anxiety it felt every day. Weightlifting stopped me falling and tripping as regularly and gave me a more solid sense of myself (I mean this very literally – non-autistics speak about exercise very differently). Putting on muscle has helped my body feel more concrete, less likely to fall over.
A few months after diagnosis I went for a drink with my agents. One of them went to the bar and the other one looked around cautiously before asking: ‘Are you still – and this may be embarrassing to ask – are you still smashing up the furniture and stuff?’
‘I got really great therapy and it fixed everything,’ I lied. I knew it was the more comforting thing to say, for both of us perhaps. It was unlikely he wanted to hear about my careful tracking of meltdown data and how certain months saw a spike and other months saw a fall and that I had to work through every single influencing factor until I could find a cure, since the NHS didn’t seem to know or care. I couldn’t be bothered to explain to him that all I wanted was for my meltdowns to be less expensive and involve fewer trips to B&Q after I’d kicked holes in the walls and that just reducing them to once a month would be a dream come true.
Six months in and the year of tracking meltdowns seemed to be paying off. I used my autism to spot patterns in what caused them and was certain I’d find the solution.
By August I was down to a miraculous zero, which I suspected was because I was living alone in a friend’s empty flat in Glasgow while I put a new tour show together. I knew now for a fact, no matter how much Conor insisted otherwise, that living alone was better for me. I had always believed without question what parents and boyfriends had told me was best for me. But now I had the data that proved otherwise. I told Sue about it and she agreed it was true that many autistics found it easier to live alone. The downside to living alone would be that I would stop normal eating and sleeping patterns. When I was around Conor I copied what he ate and slept when he slept. If I wasn’t tired at night, I’d still lie next to him and pretend to be asleep and after the first year of dating the sleep problems I’d had my whole life significantly decreased. It was absurd that you could just copy what the other person in your house was doing and it would make life more normal, more stable.
By October they shot up dramatically and I charted seven in a month, a record high since diagnosis. I was back to working flat out with no end in sight. I asked to cut back on some jobs but this didn’t happen so I was forced to cut out most socializing instead. I thought of the time Stephen Fry had a manic episode and abruptly left the West End play he was starring in to board a ferry to France. This seemed like an appealing option.
I observed myself like this was a scientific experiment. All the conditions were as they should be. I was following all the advice. I had cut out alcohol and weed, was taking Vitamins D and B, magnesium, ashwagandha and 5-HTP. I was walking 10,000 steps a day, going to yoga and Pilates, weightlifting, eating at regular times, stimming more openly, masking less. Still the meltdowns came, often relentlessly and one day after another. I looked again at my data. I was forced to conclude it was excessive work. Yet again I promised myself: Just get through these three months then try and work less – even though by now I knew it was a lie.
In November I had ten. I was preparing to start filming Taskmaster and the stress of prep along with my usual workload was taking its toll. I asked to cut one job from my schedule – a podcast – but had to do more episodes so as not to be in breach of contract. I started to have meltdowns in front of people – including in the studio, where I tried to discreetly hit myself in the head over and over during a recording while my co-host tried to politely look away. The problem is that neurotypicals interpret this as rage when actually it’s more akin to someone slapping an analogue telly that’s on the blink. When I hit myself in the head, I’m trying to knock my nervous system back into function.
December. Month 12. I should have been cured by now. I went to Tesco with Conor to buy a Christmas tree. While we looked for tinsel and mulled wine, a woman started singing ‘Last Christmas’ and the high-pitched whine tuned everything out like a fly buzzing overhead. The syrupy X Factor crooning synced up with the flickering fluorescent lights in the ceiling. I felt the tiny hairs in my ear stand on end. I thought to myself that people who sang in public should be fined on the spot. People who whistled anywhere outside their private property should have their lips stapled shut. I stood motionless in the aisle, put one hand over my ear and grimaced. Conor pulled me away gently by the elbow. I asked to buy some chocolate. Conor awkwardly reminded me I’d ordered him to stop me from doing this because I was dieting for filming. I had a meltdown and started punching bars of Dairy Milk over and over. I remembered a work colleague who once told me I didn’t look autistic and thought, Look at me now, fucker.
In therapy later with Sue on Zoom, our respective Christmas trees twinkling in the background, I sat with my head in my hands and told her again I couldn’t seem to fix the meltdowns. She told me that in the same way you get As, Bs and Cs at school, I needed to grade my progress on reducing meltdowns that way. Currently I was giving myself either an A or a U grade with nothing in between.
I’d met with Taskmaster producers before we started filming in December. Someone asked: ‘Are there any phobias you have that might get in the way of filming?’ I paused and thought about what Sue said and considered whether I should openly say I’m autistic or do what she advised – half-mask and tell a white lie to explain my sensory problems. I looked at their kind faces. I so wanted to please them and do a good job.
‘Honestly, anything that might be an issue for you, it’s better you tell us now. We’ve had a few people on the show frightened of balloons and didn’t tell us then they freaked out on the day.’
A balloon phobia was pretty mental. Maybe I could tell them? I thought of the money I was being paid and the inevitable confusion on their faces if I explained that too much light or noise would cause me to go from normal to mute. How stupid and precious that would sound. Trying to encourage myself, I tried to think of what a positive experience I’d had telling the producers on another series I’d filmed.
‘Erm, I’m a bit funny with fluorescent lights and some noises . . .’ I trailed off, embarrassed. What was I going to say? ‘Oh, and if I get overloaded I’ll have a meltdown that looks like something a toddler might do. Or I’ll stop speaking and making eye contact and I’ll lose my ability to make you think I’m a semi-normal person.’
I thought again of the money. It was a lot and I wanted a new kitchen. They could still replace me at this stage. ‘But no phobias, no,’ I said finally.
We all laughed. Inside my head, I pressed ‘play’ on the sound of an engine revving up – the sound I always made inside my brain when I was getting ready to do some hardcore masking. I could spend the money I was earning on more fancy therapy. I figured if I could make enough money before I was 40 and had the career-ending nervous breakdown I seemed to be hurtling towards, I could retire and go live as a hermit back home in Scotland. Masking was surely better than being poor? When I got home, I composed an email to my agent to say I’d tried to explain my autism to them so that it wasn’t an issue, hoping for some advice on what to do. I stopped typing, read it back and saved it to my drafts folder. The pool of people I can talk to about this is so small it’s barely a puddle. I thought of a couple of high-profile comics I vaguely know who’ve had breakdowns from overwork and wondered if I should talk to them. It felt too risky so I decided against it.
On the first day of filming, I mentally totted up all the normal things I’d said throughout the day. During the tasks I’d unmasked and was my true autistic self. Taskmaster was unintentionally the most autism-friendly job I’d ever had because it’s a show that values being yourself. By then I’d learned I was my very worst self when concentrating on hiding my autism – so that meant that the only way forward was to openly stim, rubbing my hands together like a little praying mantis, while I thought of how to solve tasks. I’d opted to say my first instinct rather than focus on the correct thing to say and was encouraged when it was met with laughs instead of derision. I felt a very pure happiness that I didn’t feel in the hellish forced group banter of panel shows.
The following day I went in to have my makeup done by a new makeup artist. In a way, I like meeting new people as it means every day is a new opportunity to redeem yourself, to make a fresh start at being seen as a normal woman and practise at it. It’s when people get to know you that they realize something’s seriously off and that’s harder to rectify.
Wanting her to like me, I thought of some safe small talk for women. An article* I’d recently read online suddenly popped into my head.
‘Have you seen the new Sex and the City spin-off?’
‘Ooh yes, it’s not very good is it. Not the same without Samantha.’
I lit up. ‘Right? You know SJP bullied her off the set?’
‘Oh?’
‘Yeah, and if you look at the Instagram posts around the time of the second film, she made all these weird comments. Also, Cynthia Nixon and SJP were old friends and they ganged up on her when they made the Atlantic City episode in Season 3 by renting a house without her and—’
I couldn’t stop now. The persecution of Kim Cattrall and her potential ostracization from a group of mean girls was too appealing to remind myself not to monologue. I took the makeup artist through my dossier of evidence that SJP was a cow. I added that SJP didn’t see it like that and had issued her own statement on the matter, then realized she’d gone quiet.
‘Wow. You really do like the series, don’t you?’
Ah no. I’d failed. I can get interested in the same things as regular women but I will inevitably end up showing my enthusiasm autistically and neurotypicals are uncomfortable with this. My research tells me they find it creepy and unnerving. I clammed up and let her tong my hair in silence. I’ve a tendency to spend hours, weeks or months agonizing over conversations, wondering how I could’ve performed ‘normal’ better, but had decided that this habit also had to go as part of my mission to reduce meltdowns. I’ve also had to consciously train myself out of feeling bad for not masking and feeling shame for seeming autistic. To do so adds unnecessary stress, which results in – you’ve guessed it – more meltdowns. So ironically the harder I try to hide my autism, the more I’ll end up being visibly autistic.
There’s no neat happy ending here. I still have to half-mask at work. Still, the more I ‘came out’ as autistic or half-masked, the less I felt revolted at my odd posture or voice; and in turn, the more I stood up for myself the calmer I felt. The calmer I felt, the more the meltdowns reduced further. Learning how to cope with them came only in part from my therapist – mostly it came from the radical autism-acceptance movement that is growing online among late-diagnosed women and non-binary folk. It did not come from my GP or a psychiatrist. While it’s great I had access to this information, put together by a group of people who are built to learn every possible fact on a topic, it should not be the case that I’m having to learn how to cope as a newly diagnosed person from 19-year-old girls on TikTok. Is it right that when I felt completely isolated in those first few months after diagnosis, my first source of information was podcasts created by other late-diagnosed autistic women who, like me, had been unable to tell anyone what was happening outside the four walls of their house and, finding a total vacuum where information should be, have gone searching for answers online?
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* ‘Samefoods’ is a term used by the autistic community to describe the often bland, safe foods we eat to regulate ourselves. If your sensory system is overstimulated then it makes sense to down-regulate your system by eating plain beige foods. Some autistics exist solely on their samefoods, which can make aspects of everyday life – socializing or eating out at restaurants, for example – tricky. Personally I only revert to eating this way during periods of uncertainty or disruptions to my routine.
* Though it’s important to point out here that a meltdown is not an expression of anger but of extreme anxiety, like a huge fight-or-flight response.
† A good example of this is James Damore’s sacking from Google: www.theguardian.com/technology/2017/nov/16/james-damore-google-memo-interview-autism-regrets
* Proprioception is a person’s sense of their body’s movement and position and is sometimes known as the ‘sixth sense’. Many people with autism seek proprioceptive input to help regulate their responses to sensory stimuli.
* www.theguardian.com/australia-news/2018/jul/30/police-tactics-entirely-inappropriate-in-shooting-death-of-courtney-topic-says-coroner
† www.independent.co.uk/news/world/americas/woman-withasperger-s-syndrome-who-shared-viral-dog-video-shot-dead-bypolice-in-arizona-a6855901.html
* atlantablackstar.com/2013/03/08/eight-year-old-special-needs-student-arrested-in-illinois/
† 9news.com.au/national/nine-year-old-girl-with-autism-handcuffed-by-police-in-sydney-after-school-meltdown/7020af65-f087-445e-858a-b0137dbad4d4
* askaspienelle.wordpress.com/2021/12/28/meltdowns-and-black-white-thinking/
* You may have noticed I mentioned earlier that weed is one of the causes of my meltdowns; but cannabis seems to act as both a help and a hindrance for different aspects of autism. See for example: www.ncbi.nlm.nih.gov/pmc/articles/PMC6336869/
* www.cosmopolitan.com/entertainment/tv/a35246263/kim-cattrall-sarah-jessica-parker-drama-timeline/
Chapter Fourteen
‘Watch out for hate,
it can open its mouth and you’ll fling yourself out
to eat off your leg, an instant leper.’
—Anne Sexton, ‘Admonitions to a Special Person’
‘You have to forgive your mother.’
I groaned and shook my head. ‘Right . . .’
I was sitting in the green room at The Stand in Edinburgh with Raymond Mearns, a mercurial old redhead who’d been on the circuit for years. He normally shouted and swore a mile a minute on stage but had recently had therapy so now everyone backstage had to hear a working-class Glaswegian tell them how spiritually sick they were. It was my turn tonight after making a minor offhand comment about how much my mum annoyed me.
