Posted on March 13, 2021
As of today, I have been self isolating for a whole year. 365 days. In that time, I’ve probably left the house no more than twenty times: for one morning of work (that had to be done out while the rest I’ve been able to do from home), for medical appointments, for swimming/hydrotherapy. And a haircut (when my Trichotillomania was particularly bad) during a period when it was considered safe to have one. But other than that, as a vulnerable person, I’ve stayed home. I worked out the numbers and that means I’ve spent 95% of the last year in my house. I look at that number and it kind of blows my mind. I’ve always been a homebody but this is so not the same thing.
So, to acknowledge the occasion, I thought I’d make a post about it. I thought about doing a list of good things and bad things, but given that the year has been dominated by the pandemic, that just felt wrong. Like, in general, it feels like the bad things carry so much more weight; a list like that just didn’t feel like an appropriate way to look at the last year. So, instead I thought I’d make a list of some of the things I’ve learned this year. There have been so many new experiences, new approaches to everyday tasks, new thoughts, new emotions, and so on. So I thought that might be a better way of looking at things. I doubt I’ll remember everything but I’ll give it a go.
As I said, I’m sure there are more things that I’ve learned during this time but I think that these are all of the big ones, the big, personal ones. I’m included in the group currently being vaccinated (although I’ve yet to hear anything) so maybe I will be heading out a little more often once that happens, if only to get some more exercise. But to be honest, given how this last year has affected my mental health, I don’t think I’m going to be exactly quick to adjust to the idea that things are somewhat safer (the government certainly seems to think so, what with their plan to come out of lockdown). As desperate as I am to see my friends and family again and get back to swimming again, I don’t think I’m going to feel safe again for a long time: as I said, I don’t cope well with change.
Category: about me, anxiety, autism, body image, covid-19 pandemic, diagnosis, emotions, life lessons, mental health, music, therapy, treatment, trichotillomania, university Tagged: adjustment, asd, autism, autism spectrum disorder, autistic, autistic adult, change, community, coronavirus, covid-19, covid-19 vaccine, diagnoses, diagnosis, essential workers, family, fear, friends, friendship, frontline workers, grateful, gratitude, hand sanitiser, health, helping, independent artist, learning, lessons, lessons learned, lockdown, mental health, mental health in lockdown, multiple diagnoses, online classes, online learning, online study, online therapy, online university, pandemic, pandemic 2020, planning, remote therapy, remote writing session, routine, self isolating, sensory, society, structure, swimming, therapy, uncertainty, unity, unsigned artist, vaccine
Posted on December 6, 2020
A couple of weeks ago, I got to speak on a panel at a conference run by UniversitiesUK about how COVID-19 is affecting the mental health of students in higher education and it was a really cool experience. So, now that the whole process and experience is over, I thought I’d write up what happened and why it felt like such a special experience.
A few months ago now, someone from UniversitiesUK contacted me after reading this blog, specifically the post I wrote about my first week back at university and doing it in the middle of a pandemic. She asked me if I would be interested in being part of the conference and speak on a panel about how to support autistic students in coping with all the changes to their education experience, drawing from both my experience of doing a BA pre-pandemic and doing an MA during the pandemic. I said yes straight away; I was excited by the idea that my experiences as an autistic person could help others, both autistic people and those in universities trying their best to support autistic students. So often – at this point in my life anyway – it feels like my Autism hinders my life, so it always feels like a big deal when it’s the cause of something good or provides me with an opportunity to have a positive impact.
Before the conference, there were a handful of online meetings where, first and foremost, I got to meet the other panelists: Jonathan Vincent (Senior Lecturer at York St John University and Autism Researcher), Eilidh Cage (Lecturer at University of Stirling and Autism Researcher), and Marc Fabri (Senior Lecturer at Leeds Beckett University, Autism Researcher, and Project Lead for IMAGE). They were all really lovely and working with them was a really positive experience for me. It was a bit of a challenge to figure out how we were going to deliver all of the information we felt was important to share without overwhelming the attendees. Between our meetings we collaborated on a powerpoint presentation and then met up again (online obviously) to refine things and make sure we weren’t missing anything.
On the morning of the panel, we met early for a quick technical rehearsal, since we were using a different platform than the one we’d been using for our meetings. All went smoothly but just as we were signing off, we got an email from Marc, letting us know that unfortunately he wouldn’t be able to be there. So there was a bit of a last minute scramble to figure out how best to share his contribution with the attendees, despite it being his field of expertise and not ours. I’m grateful that that didn’t fall to me, having no experience in the area of employability of autistic graduates.
I’ve never really done anything like this (the closest experience is probably being a guest at a conference where I briefly shared a project relevant to the talk that I’d worked on) so I admit I was pretty nervous when all the conference attendees started logging into our breakout room. But despite my anxiety, the whole thing went well, even though we did go over our allotted time. And that was with only the three of us!
It was really interactive so there were polls and questions for the attendees to respond to, plus the chat where they could ask questions, although we did have a Q&A set up for the end of the presentation. We went through the panels, taking turns to speak about what Autism is, the disclosure numbers in Higher Education, research into into how autistic people often struggle with uncertainty and change…
And then it was my turn (although I had spoken a bit during previous slides). My first slide was about my experience of how COVID-19 has affected me as an autistic student and the challenges I’ve been faced with. I’d put together what I felt were the most significant examples:
All of our strategies that have been built over time no longer apply and there has been no time to develop new ones.
My second slide was about what I’ve found to be helpful or what I would find helpful during this time, considering all of the uncertainty and anxiety. They’re actually all ideas that would be helpful generally but since many autistic students are struggling even more than usual, these things are all the more important.
(This wasn’t all on the slide, by the way. The headers were on the slide and the rest were my notes for expanding on those headers in order to provide as much clarity and insight as I could.)
I shared this slide with Eilidh and she described what she’d found to be helpful with autistic students, going on to share some of the research she’d done into some of the causes of autistic students dropping out of higher education (obviously done pre-COVID but still very relevant – many of those issues, such as lack of understanding, still exist regardless of the pandemic). But it was really interesting to see how much our experiences of what has been helping overlapped.
The Q&A section was a bit scary, given that I didn’t know what the questions might be and so couldn’t prepare for them. I didn’t want to say something and then realise later that it was bad advice. But it actually went okay. I got a couple of questions but there was one that really stuck out to me. One of the attendees asked me about the situation of many autistic students wanting to remain online – in environments where they were comfortable, without the anxiety of potentially confusing social interactions, not have to deal with the exhaustion that days at university can cause, and so on – even once it’s safe to return to university as normal. She wanted to know, from my experience, whether that’s a good idea. I can certainly understand that. But in the long run, personally, I don’t think it’s a good approach. Every autistic student is different, of course, and will have different needs but I think that the experience of university is a really important one. It definitely was for me. So I think it comes down to supporting these students through the process of either joining or rejoining university. Depending on the student, this could involve visits when there are as few people around as possible, one-to-one meetings with lecturers or tutors as a first step to going to classes, doing certain classes (perhaps the smaller ones) in person and doing others online in a blended set up, encouraging them to do as much as they feel able to (and depending on the student, pushing just past the point of comfort if that feels possible) but allowing them to leave if they feel it’s too much, and just slowly building up to the full experience, as the specific student feels able to. It reminds me of the Māori word, ‘Takiwātanga,’ which translates into ‘his or her own time and space’ (devised by Keri Opai). So hopefully that was a helpful answer.
It was a really, really great experience. The feedback I’ve had has been really positive and I learned a lot too; the whole experience was really rewarding. I’m so grateful to UniversitiesUK for inviting me to be a part of it. I would love to do more events like this in the future. I felt like I was actually helping people, something that’s always been important to me regardless of my Autism. And on a more personal note, having spent a lot of time feeling helpless (as well as being a person who often needs a lot of help), it was so empowering to turn something that can be so debilitating into something positive and useful.
Again, I want to extend my thanks to UniversitiesUK, Jonathan, Eilidh, and Marc (although he couldn’t be there on the day) for making my first conference such a positive experience.
Category: anxiety, autism, covid-19 pandemic, mental health, research, tips, university Tagged: asd, autism, autism research, autism spectrum disorder, autism support, autistic, autistic adult, autistic student, change, conference, disability support, eilidh cage, jonathan vincent, lockdown, lockdown 2.0, lockdown 2020, marc fabri, online classes, online learning, online university, pandemic, pandemic 2020, pandemic anxiety, panel, support, uncertainty, universitiesuk, university, university support
Posted on May 9, 2020
When I’m not spiralling into an anxiety-induced meltdown over the pandemic, the resulting quarantine, and (particularly) the thought of a loved one getting sick, I can look at living in lockdown in a somewhat detached, practical sense (something that has taken over a month to be able to do). Intellectually speaking, we’re living in unprecedented times, experiencing something that our parents are experiencing with us for the first time – something that very rarely occurs. There are very few people alive who have witnessed the last pandemic of this scale: the Spanish Influenza in 1918. So this is a big deal, one that will be written about in history books and studied in the future – from political, sociological, and psychological points of view to name just a few. I’ve been thinking about that a lot recently and I can’t help thinking how often history is told from the point of view of the powerful and how terribly, appallingly wrong that is, especially given the number of mistakes being made by the people in power during this period (I’m speaking from the UK but I think we’re all aware of the mistakes being made by other governments, especially that of the US). So, if we want that to change, we have to write it ourselves, write our own experiences of living in lockdown, both for the history books but also for our own sake, so that we don’t forget what this experience has been like and how our lives have been changed by it. And as true as it is that we’re all in the same position – all in lockdown with limited access to our families and friends, the world outside, and our ‘normal lives’ – each of us will be experiencing this differently so I think the more experiences written about the better. So here I am, writing about mine, both for the reasons I’ve already listed but also to keep from drowning in it all, in the anxiety and the fear and the attempt to keep going as if this isn’t a traumatic experience.
I was aware of the Coronavirus before it even moved out of China but it felt like such a horror movie scenario and caused me such anxiety that I worked really hard not to think about it too much. It seemed unlikely that it would get all the way to the UK so I focussed on the anxieties in front of me and got on with my life. Besides, surely the government would be prepared should it reach us, given how much warning they had. I didn’t vote for this government nor do I trust them but I assumed that their egocentric motivations would have them preparing the country as best they could, for themselves if not for their people.
But then the virus started to move from country to country and more and more people in the UK began to take the idea that it might reach us seriously. I battled with my anxiety around it, trying to act responsibly without thinking so hard about it that it sent me into anxiety induced meltdowns. To an extent, I felt fairly unafraid of getting the virus as a young, physically healthy person but having said that, I was very aware that I was in regular contact with immunocompromised people and I was terrified of getting it and passing it on to them. So I was careful to wash my hands, use hand sanitiser, and avoid busy areas and travel times where possible. My anxiety had already been high before the virus made the news so it was a daily battle, as it often is.
Then everything seemed to happen at once. One day I was making plans with a friend for later in the week and the next she was on a plane back to her home country because of the travel ban. I didn’t even get to say a proper goodbye (that’s my little bit of self-pity done because I know, without a doubt, that she made the right choice and I absolutely support her decision). Before that week of classes began, our course came together (electronically) and decided that we didn’t feel it was safe for us or others if we were travelling to and from uni, etc, so suddenly my weekly routine was gone, my education disrupted, and my friends were all going home, again without any of us actually getting to say goodbye to each other. I know we can all talk via social media and video calls and that this isn’t forever but depending how long this goes on, we may never come together as a course again and that is an idea I find really difficult to get my head around emotionally.
I think it was the next week that we went into official lockdown. My university pulled out all the stops to support us and within days, our classes had been moved online but prerecorded lectures and a forum aren’t the easiest ways to have discussions and a sudden lack of access to the library and facilities wasn’t an easy adjustment. I found the online classes difficult. Don’t get me wrong – I really appreciate how hard they worked to keep our education up to date and as normal as possible – but it’s not the way I learn best. It’s just a personal thing. It also made working on the assessment essay much more challenging. Fortunately, I had a tutor who was incredibly supportive and with his help (and my Mum’s), I managed to get it in with good time, despite the added stress and the impact that had.
The essay, despite the anxiety it caused me, was actually a good distraction. As soon as it was done and submitted, I really started to feel the effects of being in lockdown. After all, up until then, I was pretty much doing what I would’ve been doing anyway: spending all my time on my assignment. But with that done, it all started to sink in.
The most obvious struggle is that I miss and worry about my family. I have four parents, only one of which I’m living with, and the others are all on their own; my brother is living by himself in London; my Mum’s Mum is also living by herself, a significant distance from any of us, even if we were allowed to visit each other (I’m thinking more in the case of an emergency where we would obviously keep our distance from each other and be very careful); and I have multiple family members categorised as vulnerable. So I have a lot of people to worry about and worry about them I do. The constant anxiety is exhausting. And as grateful as I am for video calls, it’s just not the same. I miss BEING with them. I desperately miss HUGGING them. I try not to dwell on it – or stress about how much longer we’ll be separated – because that is only more damaging to my mental health but it’s hard. It’s really hard.
On a similar note, I also really miss my friends. We have video calls, regular calls, texting, social media, movie dates on platforms like Netflix Party, and so on but again, it’s not the same. It’s not the same as hanging out with them, or hugging them, or going on coffee dates, or having writing sessions. As I’ve already said, I’m trying not to think about how long it could be before I see them again. We’ll manage, thanks to the technology we have, but it will be really wonderful to see them again.
The other thing that I’m really struggling with right now is my mental health. For those of you who know me or have followed this blog for a while, you’ll know that, amongst other things, I struggle daily with anxiety and depression. These are the particular problems that have only gotten worse since the appearance of Covid-19 and the lockdown.
I’ve still been having therapy, but via Zoom instead of in person. In theory, it shouldn’t be that different but somehow it is. I’d never really considered how important it is to have a space to work through all the hard stuff and then be able to walk away from it, which you just can’t do when you’re having therapy in your living room. Plus, Zoom calls are exhausting – here’s a good article about that – which only adds to how exhausting therapy can be. Then, when it comes to the content of a session, it all feels a bit frozen: it’s hard to tackle difficult emotions when we’re in the middle of different difficult emotions. And when I’m just about coping, feeling so fragile, I don’t want to trigger something and make life even more emotionally difficult for myself than it is already. So the whole thing is really tricky and confusing. Having sessions is definitely better than not having them but it’s not straightforward. It’s not as easy as I thought it would be when we made the plan just before lockdown.
And just to add to that, I’ve been struggling with sleepiness as a side effect of my medication for months but that’s gotten a lot worse since self isolating (perhaps from the increased anxiety – I don’t know). I’m exhausted by the smallest things and I seem to need so much more sleep. And that hasn’t been helped by a sudden, intense bout of hay fever, which has bestowed upon me the additional symptoms of an itchy, blocked nose and sore, itchy eyes. It’s been so bad that even having the windows open makes it dramatically worse so going outside definitely hasn’t been an option (I can’t take antihistamines because of my other medication). So I can’t even go in the garden, making me feel all the more trapped. Inhaling steam helps but only for short periods of time. The recent rain has been a blessing, giving me several days of relief. I’m cautiously hopeful that it’s started to settle – I’ve managed a couple of trips into the garden without incident – but I don’t want to speak too soon.
And lastly, for now at least, I’m really struggling with how uncertain everything is, uncertainty having always been something that causes me anxiety. We don’t know when the lockdown will end, we don’t know when we’ll be safe again, we don’t know when we’re going to see our friends and family again. I don’t know what’s going to happen in terms of my university course. And so on and so on and so on. So on top of the ongoing fear, there’s nothing solid to hold onto. Many of my summer plans have become impossible or at least difficult, while some have been cancelled outright, which has obviously been very upsetting and left me without anything to look forward to or anchor me. I feel very lost. I’m sure that’s true for a lot of people at the moment. I try to focus on each day as it comes but it’s hard. We’re all so used to looking and planning ahead.
One more thing… I found this on Twitter the other day and wanted to share it:
Let me be clear (a thread):
Those "all over the place" feelings you've been having? They are symptoms of stress, NOT personal failures of yours.
Do you feel FLAKEY + INCONSISTENT? That's b/c your brain doesn't know what news to brace for next, or what next month will hold.
— Alexis Rockley (@alexisrockley) April 14, 2020
Feeling CREATIVELY BLOCKED? That's because your brain has temporarily diverted all its creativity (aka ability to solve novel problems) to "how do I avoid dying?" while in a narrowed, slow burn, fight-or-flight state.
— Alexis Rockley (@alexisrockley) April 14, 2020
Your plans, creativity, energy, focus + motivation are on a YO-YO right now, b/c your brain believes you need to be EXTREMELY ADAPTIVE.
You will not be on this rollercoaster forever. Be patient with your brain.
a positive psychology-certified coach + fellow human
— Alexis Rockley (@alexisrockley) April 14, 2020
I found it really helpful to have various explanations as to why I’m struggling, to know that my brain isn’t actually broken. Of course, knowing this stuff doesn’t actually fix the problems but being able to take a breath and reassure myself that there is a reason and that it won’t last forever has been helpful.
I hope you’re all safe and coping the best you can. And if you’re in the UK and they do loosen the lockdown this coming week, please continue to be careful. I hate being in lockdown but I’m absolutely terrified of what will happen if the government relax the rules, of how many more people will get sick and die. I’m scared out of my mind that someone I love will catch it. I can only speak for myself but I’m sure I’m not the only one with such fears. So please, please be careful. For all of us.
Category: covid-19 pandemic, death, medication, meltdowns, mental health, music, sleep, therapy, university Tagged: anxiety, assessment, collaboration, concentration, coronavirus, covid-19, cowriting, depression, drowsiness, emotions, essay, exhaustion, family, fatigue, focus, friends, hay fever, history, lockdown, masters degree, masters degree in songwriting, mental illness, netflix, netflix party, online classes, pandemic, planning, plans, quarantine, self isolating, sleepiness, social history, songwriting, summer, technology, travel ban, trigger, twitter, uncertainty, video calls, writers block, writing session, zoom, zoom calls
Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder (ASD), ADHD (Inattentive Type), and Hypermobile Ehlers-Danlos Syndrome (hEDS), as well as several mental health issues.
I’m a singer-songwriter (it’s my biggest special interest and I have both a BA and MA in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is on all platforms, with all proceeds going to Young Minds.
My debut EP, Honest, is available on all platforms, with a limited physical run at Resident Music in Brighton.
I’m currently working on an album about my experiences as an autistic woman.