Living with a differently-wired brain is challenging at the best of times – never mind in the midst of a global pandemic. Erin Kavanagh–Hall chats with six neurodivergent New Zealanders who share the obstacles they’ve overcome during the Covid-19 lockdown.
‘I was terrified of being stuck inside’
Cate, 31, Wellington
As a person with autism, the lockdown has been pretty unbearable. It has been absolute terror for me knowing that things are so very different – from what I knew, and from what the world has been, and should be. The terror comes and goes, but, to be honest, it never lets up.
I was initially diagnosed with obsessive compulsive disorder as a child, due to my stringent reliance on and obsessive need for routine. Even as a baby, I had very ingrained patterns – according to my mum, I would cry and cry if things weren’t running to a particular schedule. However, I was experiencing a lot of other difficulties – such as extreme anxiety in some social situations, and feeling overwhelmed and panicked by loud noises, to the point where I’d stamp my foot and shriek involuntarily if a motorbike passed me in the street.
At 21, Mum took me to see a neuropsychologist who was, at the time, one of New Zealand’s leading experts on the autism spectrum. She had me do a whole lot of diagnostic tests for autism – and I ended up scoring 49 out of 50 for most of them. My first thought was, “Hallelujah, it all makes sense”.
Like a lot of neurodiverse people, I manage my condition through routine. I find huge comfort in patterns and repetition. A massive part of my routine involves my gym: training, doing classes in a group environment, and connecting with the network of friends I have built. Exercise is like medicine for me – the best way to cope with my anxiety is to convert it into kinetic movement. If I don’t make it to the gym, I’ll go on a bush walk. I’m also someone who craves connection, so my routine often includes meeting up with close friends.
My routine is my anchor – it’s crucial for helping me feel safe. But, with the lockdown, many of the things that I rely on to stay well have been taken away, and I’ve been thrown right off balance. Doing yoga classes as an outlet, being part of a community, hugs from friends – I never realised until now what a privilege these were.
I’m not someone who does well just staying at home. We’ve been given permission, as a country, to sit on the couch and watch Netflix – but I don’t particularly enjoy watching series or movies. I’ll sit down, and watch maybe two minutes of a TV programme, and then I’ll get bored, anxious, and just want to move. I feel like I should enjoy it – but I’d rather do something than watch someone else do it on a screen. At the start of the lockdown, I wanted to go for a walk but it was pouring outside – and I got so upset that I ended up self–harming. I was just terrified of being stuck inside.
I’ve worked hard to modify my routine during the lockdown, and keep myself grounded. I play the piano and sing. I do a lot of housework – there’s something very cathartic about vacuuming. I’ve been doing body combat and balance classes online every morning – though I did panic when the internet went down last week, halfway through a yoga session.
A big misconception about us “Aspies” is that we don’t feel empathy or compassion for others. But, in fact, we feel these emotions very strongly – on a global scale. Hearing about elderly people left to die in their beds, abandoned by their support workers, in Italy and Spain tears at my heartstrings. Every time I hear of someone dying of Covid-19 in New Zealand, I cry. I’ve spent a lot of the last few weeks crying for our world. We Aspies do feel – we just don’t always know how to express it in a typical way.
‘I’ve been able to buy wine, but not the equipment I need’
Zari, 24, Auckland, legal researcher
I was diagnosed with dyspraxia as a small child. Despite the fact dyspraxics make up 2 to 5% of the population – more common than red–heads, who make up about 1% – our condition isn’t well known or understood. Basically, we have dubious control over our bodies.
The Greek word praxis translates as “action”, so we have difficulty with things like movement, balance and motor skills. For me, it hurts to write. I find it difficult to pick up and hold certain objects. I feel very tired if I have to run anywhere or walk up and down long flights of stairs, as I have to concentrate on co-ordinating my limbs in that sequence. I often joke to my friends that I’m like a video game that has lag. Or like YouTube when it’s buffering.
I also have some of the traits of autism and ADHD, in that my executive function and concentration is impaired. So, dyspraxia sometimes feels like an “everything and the kitchen sink” diagnosis.
I’ve been working from home for the past few weeks. Before the lockdown, I brought as much work equipment as I could home in my bag. I couldn’t take my ergonomic keyboard, however; I had to borrow one from my brother. I use two monitors at work, which means less flicking back and forth between tabs. For example, I have something open that I’m reading and something that I’m writing at the same time. Tabbing in and out isn’t great for my concentration, so it’s been a challenge at home with just the one screen.
I’ve been doing my best to replicate my regular working hours, even clocking in an hour early. Though I would say my productivity has been affected. I usually work in an open plan office, but it’s fairly quiet. I find I do get distracted easily – and there are a lot of distractions at home. As we speak, my five month old kitten is right beside me, goofing off. Her litter tray is in my room, and sometimes the ammonia smell really throws me. People come into my room to ask questions, or wanting a chat. Our house is over 100 years old, and noise travels really easily. The sounds of the vacuum cleaner, my dad having phone conferences in the next room, someone making a coffee in the kitchen all make their way into my room. Once my concentration breaks, it can be hard to get back on task.
I find wearing headphones and listening to music and podcasts, really helps. It gives my distractible Pointer brain something to chew on while I’m doing all the repetitive tasks, like spreadsheets. And I’ve been going for walks where I can. Usually, at the end of the day, I get the bus and walk the rest of the way home. My mental health has been adversely impacted without my evening walk – I didn’t realise how much I needed it until I was without it.
There are several ways in which the wider community can better support people with disabilities, but one thing that strongly comes to mind is access to equipment. Of course, the lockdown happened quickly, so there wasn’t a lot of time to plan – but it would be helpful if, during a crisis, there was more of a focus on the products and services we need to function. For example, stores like PB Tech were deemed non-essential. It was weird to me that I could buy wine, but not a keyboard or a computer monitor to help me do my work. It would be good if there were more awareness of the essential services for people who are neurodivergent.
‘My brain is a liar’
Gina*, 31, Lower Hutt, technical writer
I received my diagnosis in October last year. I initially thought I might have ADHD but, actually, I sit on the autism spectrum. It certainly put a lot of my life experiences into context. Things like spending hours researching my favourite topics, my emotions going from zero to 100 all at once, not being able to tune out the whir of the fridge or the buzz of the fluorescent lights at the office – turns out, not everyone has that. Not everyone can literally hear the electricity.
I’ve always tried to avoid the idea of working from home. Home is where all my comforts are – and thus all my distractions. If my supervisor can see what’s on my screen, I’m held accountable. But then the lockdown happened and my company was declared essential. We had almost no time to plan, and get our heads around all the logistics. So, I went home and basically commandeered the dining room table as my workplace.
Working from home while neurodivergent has been interesting. On one hand, it’s good to be away from the bright lights and cold temperatures at my regular office. If I want to switch the lights off and blast the heat pump at 28 degrees, I can. On the other hand, when I’m on my own, it’s harder to get on top of the mental underload side of things. If I’m working on tasks that I don’t find as interesting, I can lose concentration – and I have to really white-knuckle in order to be a functional adult and get myself through it. During the lockdown, I’ve had colleagues call me when they’d usually email, and when that happens it’s harder to pick up the threads of concentration.
It doesn’t help that my brain is a liar. I tell myself that I’m going to use the Pomodoro Timer method – work solidly for 20 minutes, then take a break for five. But my brain knows how to undermine that. It will be like, “well, you could go back to work after five minutes – or you could spend the next 25 minutes fucking around.” Luckily, I feel very supported and understood by my supervisor.
I know a lot of people have found it comforting to be able to go outside for a break, or go and get the groceries. But, to be honest, I feel scared to go outside at the moment. Going outside means interacting with people, even for a short time – and, with my autism, I find I can either manage my emotions or other people’s, but not both. There’s been a lot of tension and stress out there, and I’m sensitive to that. Plus, it’s really hard for me to read body language, especially when people are tense. I feel like if I go outside, I just bring the bad back inside. So, it’s safer to stay inside, and spend my breaks gaming or looking at memes on Tumblr.
There’s been a lot of talk over the years about flexibility in the workplace. The pandemic has forced companies to be more flexible as to when and where their employees are working. I’m hopeful we will learn some lessons from the pandemic, and allow people to continue working in the ways which allow them to be the most productive. I’m hoping that we don’t forget the pandemic happened, and just go back into our regular workplace boxes.
‘I’ve been able to lead others who’ve been falling apart’
Jacob*, 29, Auckland, nursery worker
Diagnosis: Attention Deficit Hyperactivity Disorder (ADHD)
Research has shown that us ADHD folk can excel in times of crisis – like a pandemic. In my experience, that’s absolutely true.
I was diagnosed with ADHD two years ago. I mainly have the inattentive sub-type (likely to struggle with limited attention span, distractibility and procrastination), but I also experience hyperactivity – if I’m not medicated, I go into Labrador puppy mode. It took me a long time to get a correct diagnosis. In the end, I paid for a private assessment, as the public health system had categorised me as bipolar and wouldn’t entertain the idea of anything else. Before taking Ritalin, my life was messy and disorganised – now I like to look at it as organised chaos.
Lockdown was hard to start with. But then, things started settling down. It was interesting, I’m not sure if it was the adrenaline kicking in, but I almost feel like I stepped out of my body and could see the world burning – and it didn’t faze me.
According to research, people with ADHD produce more theta brain waves which appear when you’re nodding off to sleep – indicating deep relaxation. So, while other people’s brains overload during a major event, ours feel relatively normal. Where there’s a panic situation, we can become relaxed, laid back and under control. I find crises, like Covid-19, kickstart me into action – I’ve been able to lead others who’ve been falling apart, taking them under my wing and helping ground them. Instead of going crazy, I’ve felt more clear minded than ever – in fact, in the days leading up to lockdown, I was functioning so highly my medication was having almost no effect.
The first couple of days of lockdown, I was thinking of all these things I could do to occupy and fill my time. But it became chaotic – I started a hundred projects and wore myself out. My mind is like spaghetti junction in rush hour, and it can be exhausting. So each day, I decide to do one thing – and anything after that is a bonus. I’ve learned not to expect too much of myself.
I have started cooking again rather than eating takeout every night, and have actually started to enjoy it. The sudden switch off has given me a chance to think about things I want to change about myself – in order to grow and move forward. I feel optimistic and excited about resuming a regular life.
‘It’s OK to have days in your jammies’
Rosie, 49, Auckland, occupational therapist
In all honesty, I think people with neurodivergence are superheroes. We have to work so hard to adapt to a world that’s straight and linear, when our brains are made up of squiggly lines and we have four conversations with invisible people going on at once. Some of us have been suicidal, or in prison. And now we’ve had to adapt to a pandemic and a national quarantine. But we cope, because coping is what we do.
I was diagnosed with ADHD at the end of last year, and have been on Ritalin since January. I was working in an office job, and really struggling – it was paperwork, paperwork and more paperwork. I was getting more and more overwhelmed, and thought perhaps I might be perimenopausal. I saw a counsellor through EAP Services, and she asked me if I’d done any research into ADHD in adult women. I read some articles online, and burst into tears of relief. Turns out I’m not just a lazy fuck up who loses her keys in her car. It’s just how my brain is. It’s a reason, not an excuse.
I’ll admit it’s been difficult these past weeks without the usual routine and structure. Usually, in the mornings, I’m up and getting my kids ready for school, and then I get stuck into schoolwork (I’m doing extra occupational therapy papers through Otago University) before going to work with my in-home care client. But before the lockdown, we didn’t come up with a schedule as a family – we’ve just kind of barreled along. I spend a lot of time wandering about in my pyjamas, and my kids spend a lot of time on their computers.
In some ways, it’s nice to have the pressure taken off a bit. In others, the lockdown adds another layer of pressure. People with ADHD actually tend to be very high achievers – we hyper focus on the things we’re most passionate about. We set high standards for ourselves. I’ve been scared to waste this opportunity – I’ve felt the pressure to use this time wisely, and do all the things I’ve been putting off.
I had all these grand plans to get into the garden, do some house painting, and work on the bach we’ve been building. But, with all the business closures, I can’t get hold of the supplies I need. I’m not doing all these amazing macrame and crochet projects I see some of my friends doing on Facebook. Since my diagnosis, however, I’ve found my self-talk has changed. It’s OK not to get everything done at once. It’s OK to have days in my jammies, and park myself in front of Netflix with a wine.
I’m a member of several online ADHD communities, and they have been a great source of support. I’ve found I’ve been a lot more sociable during this time – I’m having video chats with friends I haven’t seen in months. I feel like I need to stay connected, keep being part of the world. Shopping has been pretty horrible; ADHD people don’t do well with queues. It would be helpful if supermarkets reinstated their “quiet hours” for neurodivergent people during this time – it would reduce anxiety for a lot of people.
People with ADHD have plenty of adaptability and tenacity. If society ends up forever changed by this pandemic, I think we will come out of it pretty well.
‘If I want to do the dishes in a superhero costume, I will’
Emma, 31, Tauranga, student
Diagnosis: ADHD/bipolar disorder
I’m a solo mum of three boys (a 10 year old and eight year old twins), and I’m in my third year of a Bachelor of Creative Industries, majoring in Fashion, at Toi Ohomai Institute of Technology. I have a dual diagnosis of ADHD and bipolar type 2. I’m also about 95% sure I’m on the autism spectrum. To put it simply, the lockdown has been a learning experience.
I initially sought a diagnosis for ADHD after my twins were born, but a lot of my symptoms were dismissed as just hormonal or related to postnatal depression. I was finally diagnosed by a psychiatrist in Auckland four years ago. I got my bipolar diagnosis not long afterwards. It was freaky – my personality almost completely changed. During my first hypomanic episode, I’d do things like jumping on the desks in the lecture theatre, and getting a kick out people’s “what the heck?” expressions. My 10 year old son was diagnosed with autism spectrum disorder last year and, frankly, a lot of his symptoms feel very familiar. Specifically, sensory overload, intense exhaustion from social contact, and rigidity when it comes to routine and pattern. It’s interesting – I showed no emotion while giving birth, but I’ll feel unreasonable anger if ever my mum helps me with the washing up, and she puts the dishes away in the wrong order.
The lockdown has definitely been an adjustment. I miss my way of doing things which may not be “normative”, but are normal for me. For example, I don’t think according to the days of the week – I think according to events. I usually have my rock n’ roll dance classes on Fridays – and I’ll think to myself “OK, I’ll need to have my assignment done before dancing”, as opposed to before Friday. Most neurotypical people might shower every day to get clean, whereas I’ll shower so I don’t smell while out in public. I just randomly realised last week that I’d not had a shower in five days. Not having these outside cues to base my life around has been a bit weird and scary.
I’m definitely getting a lot of sensory input from having my sons at home. They’re very hyped up, and going to bed later and later. And one of the biggest triggers of my bipolar is a lack of sleep. Homeschooling has been a challenge – they don’t really want to learn from their mum. I’ve been trying to get my own study done while they’re doing their schoolwork but that’s almost impossible with the boys coming at me with constant questions. I don’t like how irritated I’ve felt myself getting. On bad days, the idea of spending more time with them fills me with despair.
But, we’re getting there. We’re thinking outside the box, and doing things our way. No one’s going to come into the house and tell us off, so if I want to start school later in the day because we hate mornings, I will. If I want to do the dishes in a superhero costume, because it makes my kids happy, I will. Being possibly autistic, I find I’m more able to relate to my older son’s style of learning – I understand what he’s going through. I’m not putting any pressure on my boys, or myself. I’d rather them fall behind than watch their mum have a mental breakdown.
Being a solo parent, I wouldn’t say I’m lonely as such. But it would be great to have another adult in the house. At the moment, I’m keeping sane by exercising, talking to my best friend online, and drawing. I do a lot of cartoons – girls with big eyes in vintage-style overalls. I’d love to put together a comic book at some stage.
* Some names have been changed, and all portraits are fictionalised representations.