Finding HopeMass Observation – A Day in the Life of UK Lockdown
Posted on May 13, 2020
On the 12th of May every year, the Mass Observation Archive asks people to keep a diary for a day in order to capture the everyday lives of people all over the UK. This year, 2020, is the 10th anniversary but we are also living in the midst of a global pandemic, making this year a unique one, to say the least.
I’m a dedicated diary writer and have been for years so this is the ideal project for me. I love the idea of so many people’s experiences in one place, the idea of collecting as many versions of one day as possible and trying to build the fullest picture of it. So I was very excited to take part in this day, even if I’ve recently been floored by one of the most awful periods of depression I’ve ever experienced.
Some important things to know before reading this: I am autistic, struggle with depression, anxiety, OCD, and Borderline Personality Disorder. All of the symptoms get worse under stress. I’m halfway through a Masters Degree in Songwriting. I’m really struggling with the Covid-19 pandemic (particularly when it comes to my anxiety, with the fear that my loved ones will get sick), self isolating with my Mum, separated from my three other parents, my brother and my friends.
I slept badly, waking up at eight with my alarm. I’ve been trying to keep to my pre-lockdown routines and on a normal day, I would’ve gotten up and got to work on something but I had a throbbing headache, probably due to the restless night. So I buried my head under my duvet and tried to hide from the light coming in through my curtains.
Being a part time Masters student means I have an empty semester from yesterday until the end of September and I had all of these plans: practice the songwriting skills I’ve learned this year, establish a recording space at home, and get back to swimming, to name a few. But then the pandemic happened and we went into lockdown and all of my plans went out the window. I’m terrified all the time. Everything feels pointless. I can’t focus on anything. And my creativity – my ability to write songs – feels completely blocked. I’m stuck in this frozen state and I just feel like I can’t breathe. I feel like screaming and crying and hyperventilating but I feel like if I start, I’ll never stop. But even distracting myself is hard. I just can’t make myself care about a TV show or whatever. It all feels too big, like there isn’t enough space in my brain for anything other than this howling fear. And this has only been made worse by the government’s most recent, incredibly unclear statement about easing the lockdown. The idea that the government think this is acceptable when hundreds of people are still dying every day makes me sick with fear. I didn’t vote for them but I at least thought they cared about the people they were governing.
The only thing that I’ve found actually helpful in distracting myself is reading fanfiction. It’s something I’ve found effective as a relaxation technique over the last year, dealing with my wildly fluctuating mental health, starting my Masters, and this pandemic. It’s easier than reading a book because I’m already familiar with the worlds and the characters, which is a relief when I’m constantly exhausted by all this fear. Escaping into a comforting world is just that… comforting. So I spent several hours doing that, reading through old favourites from my teenage years when I first discovered fanfiction. It just gave me a break from everything. As much as possible, anyway.
Eventually though I got up and went downstairs. I thought that maybe working on one of my anxieties would help my overall level of anxiety so me and Mum went out into the garden to do some filming for a music video. My original idea is now impossible with the lockdown, which has been very upsetting because I was really looking forward to it, so I’m having to come up with something new, something that’s been difficult and frustrating because the original idea felt so perfect. I’m not super happy with the current back up plan but I need something. So me and Mum spent several hours filming [I’m omitting some bits here because I don’t want to give away the video if this is what we end up using]. I have absolutely no energy at the moment so I was completely exhausted by the end of it, even though I don’t feel like I actually did that much. I ended up falling asleep in the comfy chair in the kitchen, sleeping for a couple of hours.
I woke up, stiff and uncomfortable and just as anxious. Apparently trying to work through an anxiety didn’t help. Maybe I didn’t solve that anxiety, maybe all of this is just too big.
I had a shower and then settled on the sofa in the living room. There are so many things that I could be doing with my time but I just don’t have the motivation, the emotional energy. I just can’t see the point – what does any of it matter when hundreds of people are dying everyday, when people are losing loved ones, drowning in unbearable grief? It’s in moments of quiet that these thoughts overwhelm me and I feel my throat start to close up.
I dived back into fanfiction until dinner snuck up on me. Me and Mum ate in front of a Lucifer rewatch – for some reason, it was the only show that didn’t make me want to scream. We watched until we were both falling asleep, until the cats were crawling all over us for their pre-bedtime snack (otherwise they do their level best to wake us up at five in the morning). So we fed them and headed for bed.
It’s hard to admit – maybe because I’m twenty five and feel I should be stronger than this – but I haven’t been able to sleep without my Mum with me for weeks now, possibly longer. All of my mental health stuff is worse at night, particularly my anxiety. It just builds and builds until I’m in a panic attack or worse, a full autistic meltdown. Having my Mum with me, feeling her heartbeat and hearing her breathe, makes things just okay enough to fall asleep, although sometimes it takes a sleeping pill too.
If you’ve been keeping a diary or still want to jot down some thoughts about yesterday, I really encourage you to do so and send it to the archive. The page is here, in case you’d like to submit or learn more about this and their other projects.
What Women With Autism Want You To Know
Posted on December 8, 2018
The other day, I was just browsing through YouTube (probably procrastinating something) when I came across this video.
“Autism is not a disease, it is a developmental disability. It’s about living our best possible lives with this condition.”
I am ridiculously excited that this video exists. Even a few years ago, when I was looking into Autism as an explanation for my struggles, I was still being told that women don’t have Autism or being dismissed because I didn’t fit into the stereotype for Autism (which has come from autistic boys and men). So the fact that this video even exists shows that some progress has been made. At this moment in time, it has just short of a million views. A million! That means that potentially a million people now have a better understanding of Autism in women. That’s completely amazing!
There’s so much good stuff in this video – you really should watch the whole thing. But here are some of main points and some quotes that stuck out to me:
1. Autism covers a wide spectrum.
- “Autism is an internal thing, not an external thing. No one looks autistic.”
- “Autism isn’t a linear spectrum of high or low. It’s a whole bunch of different traits that are on their own spectrums. It’s kind of a 3D, weird mess.”
- “Autism is simply a different way of thinking, seeing, and interacting with one’s world.”
2. We have emotions.
- “I would definitely disagree with the idea that we’re not emotional. I think we’re actually highly emotional. I think that we just… many times we don’t express it the way people expect… We’re feeling it. It’s there. But it just might not come out. And then, at other times, it might be overly expressed.”
- “We can’t filter them out because we feel them so strongly so we shut down as a way of processing all those emotions.”
3. Social interactions can be challenging.
- “It takes a lot of effort to appear [like anybody else, like someone not on the spectrum]. Like, it takes a lot of conscious awareness. Social skills are like a muscle for us.”
- “It’s very, very draining. Even with people that I care for and enjoy being around, I have to psych myself up to be around them.”
- “All the little things that everyone does unconsciously, autistic people do manually. So that adds up. What I’m doing with every part of my body, I am to some degree aware of and trying to do.”
4. Diagnoses can happen at any age.
- “A lot of women, women that I know who are autistic, are not diagnosed until their twenties, thirties, or even beyond. A large part of this is because the way that we diagnose Autism is by using criteria that were created by observing boys and Autism looks different in girls and women than it does in boys.”
- “I feel like, ‘okay, I know why I’m this way, I know why other people are the way they are, so I can bridge this gap.'”
5. The nuances of dating can be challenging… but we do have sex lives.
- “We just may need more support in order to learn how to make [relationships and sex] happen. We don’t naturally understand the nuances that are involved and there are a lot of nuances.”
- “People on the Autism spectrum, especially women, are more likely to experience sexual assault or some sort of violent incident than the neurotypical, non autistic population. We are very vulnerable. We definitely can be more trusting because we are very honest and upfront people so we don’t think that other people might not be so honest and might be trying to hurt us.”
- “One of the traits of Autism is not reading between the lines in social interactions and so much of dating and sexually is supposed to be indirect and subtle and that it’s inappropriate to talk about sex in a direct way, even when you’re teaching it as sex ed.”
- “No one is teaching the social aspects [of dating and sex]. And honestly, this is where autistic people are the canaries in the coal mine. Teaching the social aspects of sexuality would help everyone. Autistic people need it but it also benefits everyone.”
6. We have lots of different interests.
- “There is a stereotype that everyone with Autism is into science and math and stuff, like Rain Man. But a lot of people with Autism… women actually, especially… a lot of us are into the arts.”
- “In my experience, autistic girls are also just as obsessive autistic boys. They’re just obsessed with, you know, fantasy novels or their favourite band or whatever. Not planes, trains, and automobiles.”
7. Bullying sucks.
- “You know, it’s like somebody making fun of a blind person only in this case you’re blind socially.”
- “We all start from somewhere but that isn’t necessarily where we’re going to end up and you have to believe that there is going to be a future.”
- “There’s enough misfits in the world, like, people who got picked on. There’s so many of us. So you do find your tribe.”
8. It’s getting better.
- “I think things are going to be a lot better for the next generation.”
- “You know, your kid might be behind their peers but it doesn’t mean they’re gonna be behind forever. Your kid is a full human being who will grow and change just like everyone else.”
As I said, it’s amazing that this video exists and that autistic women are being seen and that people are finally understanding that autism in women looks different than it does in men, and that it can look different from woman to woman. I agree with all of these points but there’s still so much to it, to living with this everyday. So, in addition to these points, this is what I, as an autistic woman, want you to know:
- I have no idea either – Just because these behaviours and reactions are coming out of my brain and my body, that doesn’t mean I necessarily understand them. I’ve done a lot of reading about Autism and mental health but it’s just different in real life. I’m learning everyday and I hope that you’ll keep learning with me.
- It’s exhausting – As these women said, it’s draining, even when it comes to things that you enjoy. It’s like you have to consciously process everything you do, everything around you, and that takes up so much energy. I cannot manage as much as everyone else and I find that so difficult to get my head around.
- I’m doing my best – I promise.
