Posted on December 24, 2020
As per tradition, here I am posting a list of things I’m grateful for on Christmas Eve. This year has obviously been very different to previous years and I think it’s fair to say that we’ve all had days where we’ve felt scared and angry and probably every negative emotion under the sun, making it difficult to feel grateful, but then it’s also reminded us of how many things we do have to be grateful for. There are many more things that could go on this list, but I’ll try to keep it as concise as I can. Otherwise, we’ll probably be here until next Christmas.
Family – I could not be more grateful for my family. I love them so much. So, so much. They do so much for me and all I want to do is make them proud. But this year, I’m especially grateful for their health and grateful to them for their care and caution during this time, for how sensible everybody has been despite how much we all want to be together. It’s been so hard not seeing so many of my extended (and even close) family members face to face for such a long time and I’m truly and deeply looking forward to seeing them all (and hugging the crap out of them) when it’s safe enough to do so.
Mum – Oh my god, my Mum. I love her so much. She is just incredible. This hellscape of a year has been so hard for me (as it has been for so many but in my case, it hammers right on my biggest autistic difficulties: uncertainty and anxiety) but she’d been completely solid throughout, always there for me when I needed her. She’s made this so much easier on me than it could’ve been and I’m so grateful for that. She’s handled everything with such grace; I’m truly in awe. I only hope that one day I will be as strong and capable as her. I’m probably going to have some separation issues whenever the world starts to function in a way that we’re more used to (I mean, we’ve been together almost 24/7 since March when I was usually in London a couple of days a week and she was in and out all day, out for full days, or even away for several days, etc so I’m very used to having her around and she’s become a bit of a touchstone when it comes to my anxiety) but I’m not going to think about that yet. It seems there’ll be plenty of time before that’s going to happen.
Friends – I am so grateful for my friends; I always am but I’m especially grateful this year. I have moments of being terrible at staying in contact and periods of being better (something that’s largely dependent on my mental health) but considering everything this year, I don’t think I’ve done too badly. I’ve been talking to and spending time with different friends in different ways: calling, messaging, video-chatting, watching movies together, a few socially distanced meet ups, etc. I’m really happy we’ve been able to stay in touch even if I do desperately miss spending time with them. They’ve been a real tether to ‘normal’ life and I’m more grateful for that than I can say. This year has also taught me (both as a result of the pandemic and not) what I need in my friendships (not that that’s all that matters but if neither of you are getting what you need most of the time, how are you supposed to make a friendship work?) and I really value that. It doesn’t automatically change anything but I think that knowing what is good for me in a friendship and what isn’t is really important and will only be helpful in the long run.
(There are a handful of people I wish I could include in this collage but don’t have pictures with, from this year anyway.)
Richard – I mean, where do I start? Generally, I’m of the opinion that the universe is completely random but something awesome happened that day six and a half years ago when I sat down next to him on our first day at university. I had no idea that I was meeting one of my best friends, most trusted collaborator, and creative partner. The Honest EP never would’ve happened without him. We worked on every aspect together and I can’t wait for whatever our next project turns out to be. This year has obviously been about as different as we could’ve ever imagined but he’s gone through every high and low with me and I couldn’t be more grateful. I’m so glad that we’ve been able to continue releasing the Honest EP and that we’ve been able to write together despite the pandemic, even if writing remotely isn’t as fun as writing face to face. I’ve missed just hanging out with him, with our friends, and actually doing things that don’t require a screen but I’m so grateful for what we’ve had and what we’ve been able to do despite the difficult circumstances. I don’t feel like I’m saying all of this as eloquently as I’d like to but what I’m trying to say is that I’m beyond grateful for Richard. I don’t know how I got so lucky with such an amazing friend.
All of the years I had with Lucky – January feels a bit like a lifetime ago; I can’t believe it’s only been eleven months since we said goodbye to our precious Lucky. It was one of the most painful experiences of my life but he was ready. I know people say that but you only had to look at him to know that it was the truth. But despite the pain and sadness of that twenty four hours (and obviously since), we had an amazing almost sixteen years with him. From meeting him when he was a few days old, to bringing him home, to teaching him to sit, to the hours we spent playing with him, to sneaking him onto the sofa with me when no one was home, to various people ‘sneaking’ him onto the sofa whenever everyone was in the room, to running around on the beach together, to watch him throw himself into hydrotherapy with such enthusiasm, to lying on the rug in front of the fire together… every second with him was a wonderful gift that I will forever be grateful for.
And while I will always wish to have had more time with him, I’m glad that he didn’t have to manage the pandemic and all the stress surrounding it. He was such a sensitive dog, especially in his old age, and I think it would’ve been really distressing for him. Saying goodbye to him was devastating enough as it was; I know that having him put down during lockdown would’ve been so much worse, especially as it’s likely that we wouldn’t have all been able to be there with him.
My cats – The family of cats have been a bit of a lifesaver to be honest. Early on in the pandemic, their complete obliviousness to the chaos in the world was very calming: they just continued with their lives and there was something very soothing about that. And just throughout the pandemic, the cuteness and silliness and playfulness have been a wonderful distraction or comfort on the more difficult days. On the whole, they’ve all become very snuggly with only me and my Mum around (they absolutely freaked out when they saw a new person for the first time in months) and now, nine months into the pandemic, I rarely go a day without having had at least two cats draped over me at some point. It’s all very cute and very much appreciated. I’m also really, really grateful for their health. I’m always aware of that but with Lucy having a health scare that resulted in two surgeries earlier in the year, I feel particularly grateful that all five of them are well and healthy.
FaceTime, Zoom, Netflix Party, etc – I’m so grateful for the platforms that existed and have come to exist to help us connect with our friends and family (and continue with university) during this time. Yes, I’m sick of only seeing people via screens and I’m even more sick of my eyes always ending up on my own face and, as an autistic person, communicating feels ten times harder but I’m still so glad that we have them so that we can see and talk to and spend time with our friends and family. It’s not enough but it’s better than nothing and I’ll gratefully accept whatever way of connecting I can get.
TV and Film Streaming Services, eg. Netflix, Amazon Prime, etc – Having access to so much media to consume was a great way to escape everything at the beginning of the pandemic and throughout the first UK lockdown. I discovered some really awesome TV shows and movies (about which I’m going to post later this week). It was escapism, but it also kept my brain creative (filling it with stories and characters and ideas) even if I wasn’t able to express it for a long time. And now that I’m writing again, I have so many ideas and stories to tell.
Fanfiction – I mentioned Fanfiction in my Lockdown Favourites post and it’s definitely been one of the things that has helped me throughout the pandemic and lockdowns, especially early on when I was just paralyzed with anxiety. I’ve really struggled with reading during the pandemic; I just haven’t been able to concentrate enough to get into a novel, like there isn’t enough space in my brain for new characters, new worlds, and new storylines. But reading stories set in familiar worlds with characters that I love (Stargate SG-1, Sanctuary, Harry Potter, etc) feels much easier and really comforting, especially when my mental health is shaky. I’ve always found it to be a good form of relaxation and escapism; maybe one day I’ll post my absolute favourites because they’re just so good, so well written and quite possibly better than the originals. I do want to give a particular shout out to Annerb who has been my staple writer this year; I discovered her through her Stargate SG-1 stories and then fell in love with her Harry Potter epic, The Changeling, where Ginny is sorted into Slytherin. I’ve reread that particular story so many times. It’s absolutely incredible: she’s filled out the world of Harry Potter so beautifully, creating real depth to the different houses and characters, both canon and original. I mean, I could talk about it forever. It’s so freaking good.
My piano – My piano and I have been good friends this year, especially since the pandemic began. Between the nerve pain in my left hand that’s made guitar playing all but impossible and the soothing lower octaves of the piano, I spent more time at my piano this year than I probably ever have before. Between the calming sound and the concentration blocking out my anxiety, it’s been one of my favourite things to do. I’ve played so many songs and written quite a few too and it’s another of the things that have kept me going through the pandemic.
The music that got me through this year – I mentioned several songs in my 2020 in Songs post but those were my absolute favourite songs of the year. There were so many more songs and so many more albums that inspired me and encouraged me and helped me to cope with all of my emotions this year and I’m so grateful to every artist that gave me that gift. I’m going to write about a couple specifically but I also want to mention Sara Bareilles (both for seeing her in Waitress several times and for her new music), Halsey, Kelsea Ballerini, and Maren Morris for their various contributions throughout the year that made things just a little easier. I hope I’m not forgetting anyone but if I discover that I have, I’ll come back and add them.
Kalie Shorr – I am so grateful that I walked into that Tin Pan South/Song Suffragettes show in 2016 and saw Kalie play. There were so many shows I could’ve gone to and yet, somehow I ended up at that one and it has had such a big impact on my life. I mean, I wouldn’t have gotten to play at a Song Suffragettes show if I hadn’t gone to that show. But my point here is that I heard Kalie’s music for the first time that night and since then, she’s released the Slingshot EP, the Awake EP, her debut album, Open Book, and Open Book: Unabridged, a reissue of the album with four additional songs. Her artistry and songwriting got better with every project but each one still holds a special place in my heart. I love her music and I learn so much from her as a songwriter. She is one of my biggest musical inspirations and I hope that, at some point, I will develop as distinctive a voice as a songwriter and artist as Kalie has. So I guess that’s why I’m grateful for her in general but I’m also especially grateful for all she’s been doing this year. Throughout the pandemic, she’s done so many livestreams on various platforms, which has been really awesome. We’ve gotten interesting and funny stories, acoustic songs, previously unheard songs… it’s been great. And while I’m obviously still enjoying them, they were particularly important to me during the early days of the pandemic when my mental health was really bad; they really helped me keep going. She’s also been part of various other musical projects, puts out a podcast, is consistently hilarious on Twitter, and released the previously mentioned Open Book: Unabridged. I’d hoped to see her this year on my trip to Nashville but then said trip was cancelled by the pandemic. I’ve met her a handful of times and she’s so lovely. I wish I lived in Nashville; then at least there’d be a chance of us being friends and writing together. I’d love that. I admit that my insecurities do sometimes get the better of me and I struggle with, I guess, comparison anxiety (how well she’s doing vs. how I’m doing) just because I want to have a career in music so badly and have so many fears over why it won’t happen, but I’m still endlessly grateful for her and everything she does. Her music has changed my life for the better in so many ways and I appreciate that more than I can say.
Taylor Swift – Despite remaining largely out of sight during the pandemic, Taylor had a massive year and by extension of that, a massive impact on my year. Her documentary, Miss Americana, came out in January, of course, which was incredible; it felt like a great honour to be let into her life like that, especially during the moments that were really difficult and personal. She also released the City of Lover Concert on Disney+, which was really cool (although it was sad that her pre-Lover songs couldn’t be included); I’d so desperately wanted to go (especially since it was so close, considering that Taylor’s a US artist) but it was just too big a risk with my health and my finances as they were. So I’m really grateful that I got to see it in some form. Even though we got folklore and evermore out of the lockdown, I still want to mention the cancellation of Lover Fest. Even though it wasn’t unexpected, I was absolutely gutted; that and my Nashville trip were the top two most painful cancellations of the pandemic. I was so looking forward to it – the times I’ve seen Taylor live have been some of the bright spots over the last five or so really difficult years – and to have that ripped away was really hard (in a parallel year that I’ve daydreamed up, it still happened and it was glorious). But then we got folklore, folklore: the long pond studio sessions on Disney+, AND evermore, all in the space of about six months. I don’t know about anyone else but my head is still spinning. folklore and evermore are both incredible albums (I’m currently writing blog posts about them because I love them so much) with so many amazing songs that I’ve completely fallen in love with. They’ve also been hugely inspiring for me as a songwriter, which the long pond studio sessions only added to when Taylor talked about the songs from folklore and the processes behind the writing of them. She has just been a very inspirational figure for me this year (she always is but, again, this year has been a real example of that): as a songwriter and general creative person, handling the ongoing situation around her Masters with so much grace, speaking out during the US election and giving the Democrats her song, ‘Only The Young,’ to use in their campaign, being a really good example around safety during the pandemic… I’m so grateful for all she does, for how inspiring she is, for how much she CARES. I’m grateful to have her to look up to. I’m still hoping that I’ll get the opportunity to tell her that one day.
Agents of Shield – I was gutted to hear that this year’s season was going to be the last but damn, do they know how to go out with a bang. I wasn’t convinced about the time travelling element at first but I ended up really getting into it and I loved how, even though they stopped the Chronicoms each time, time still changed and they ended up in a drastically different present. Every episode was really, really good and a few of them were standouts of the entire show (7×09 – I’m just saying…). I loved the stories, I loved the development of the characters, and I loved the ending. It was perfect. I was sobbing throughout the last few episodes because it was so powerful and emotional. Daisy Johnson is my hero. I will love her forever. I will love this show forever. I’m so grateful to have discovered it, to have had it in my life, and to move forward with everything the show gave me. There may be no new episodes but that doesn’t mean it’s over; the impact it had on so many people will never be over.
The new swimming pool we found – Late in the summer, we found a swimming pool that was really strict about their safety guidelines and having not felt safe at my previous pool, I was so appreciative of that and so excited to get to swim again. It wasn’t as often as I would’ve liked but anything was better than nothing after months of not having access to a pool or not feeling like it was safe to be at a pool. It just felt so great to get proper exercise and really use my muscles again after not being able to since before the pandemic. I love this pool, especially when they turn the main lights off and the room is just lit by the underwater lights; it’s so soothing and just a really good atmosphere to exercise in. I always feel so good afterwards.
The benefits I receive – I am so unbelievably grateful for the benefits I get, more grateful than I can truly express. As a disabled person who struggles physically and mentally, I’m constantly worrying about money because my health is so unreliable and therefore steady work or a steady work flow can be really difficult or even, at times, impossible. So the financial support has been amazing and so important for my mental health, especially during this year of constant uncertainty.
The (medical) progress I’ve made despite the pandemic – Despite everything moving slowly due the pandemic (my rheumatology referral, for example, took about nine months), we’ve learned a lot about my body and my brain this year and we’re in the process of exploring the options, the avenues we have to choose from. I made medication changes, we chased more options for helping my CFS, was tested for a Vitamin D deficiency and given a high dose supplement to bring my levels up again, I was diagnosed with hypermobility, I finally had the rheumatology appointment and have been referred on to a handful of different departments. I’ve had a MRI, I’m due to have an ECG, and will hopefully start hydrotherapy as soon as it’s available, although I’ve already started doing the basic exercises I was given. And we’ll see what the other departments say. Oh, and I have another mental health evaluation coming up soon, which may give me some more information so, despite everything, we have made progress and progress that is hopefully leading to more progress. As hard as it can be day-to-day, I’m really pleased about that.
The result of the US Election – I mean, this one is pretty obvious. I was so terrified that Trump was going to get in and it was so scary to have no say or way to help. The days of waiting for the final result were agonizing and when I found out that Biden had won, I actually cried. No, he’s not perfect but he’s far, far better than Trump and I’m so grateful, in this regard at least, to finally have some hope rather than fear and horror and frustration.
My tutors – Of the two semesters I had this year, all of my tutors have been so, so good. And not just in the ‘being good teachers’ sense (you’d hope that was a given at Masters level) but they’ve all been so fantastic about working WITH me to make sure the classes and workload and assessments were as manageable as possible for me with my difficulties. They’ve been so open and supportive and they’ve made the semesters so much much easier; I mean, the work was still hard (but then it’s a Masters Degree so the work is supposed to be hard) but there wasn’t that unnecessary stress that there has been before. I’m still anxious about my grades but that’s practically a personality trait. Anyway, they’ve been absolutely wonderful and I so appreciate it.
The experience of the Honest EP – The first track of the EP, ‘Bad Night,’ came out in 2019 but the other four came out this year, including accompanying music videos and additional content like remixes and behind the scenes for the songs and videos. Making and releasing and promoting all of that was often really stressful but so much of it was really fun too. The beginning of the year was really fun: releasing ‘Clarity‘ and see it do better than ‘Bad Night,’ doing several really fun gigs with really lovely people (there was a really awesome moment where everyone was waving their phones with the flashlights on and another where everyone got really into the song, dancing and even singing along despite it being the song’s first outing), playing my university’s songwriters’ circle, a weird and wonderful studio day… and then the pandemic hit. My mental health took a real dive but things kept moving. I released a remix of ‘Clarity’ with an accompanying music video, which was definitely a new experience. Then I released ‘Sounds Like Hope‘ along with the gorgeous music video animated by Lois de Silva. I saw myself on TV when the music video for my debut single, ‘Invisible,’ was played as part of Brighton’s virtual Disability Pride Festival. Richard and I managed to film and edit the music video for ‘Back To Life‘ (during a period when it was safe to do so – we were very careful about that) in time for the planned release of the song. Even though shooting that video was super stressful, I was still able to have fun: it’s such an upbeat song that it was really fun to prance around to and even though the sea was freezing and the pebbles were painful to stand on, messing around in the shallows was actually kind of joyful. So the song and video came out and then, at the end of October, the fifth and final track, ‘Honest,’ came out, which was really exciting. It did really well and Richard and I celebrated the day with a dance party and a shot (I can’t speak for Richard but I’m a lightweight). It was a really fun day. We put together a music video for it, using clips from this whole bizarre journey; it felt very fitting for a song called ‘Honest.’ And as of this moment, the EP has surpassed 35,000 streams on Spotify, which I’m both really proud of and really grateful for, grateful to everyone who took the time to listen to these little songs that I wrote. There have been so many beautiful moments during this journey and it’s not even over yet; there’s still more to do and more to come. It’s been incredibly stressful but I’ve never felt so strongly that I’m in the right place as when I’ve been working on this project and performing these songs. I’m so grateful to and for all of the wonderful people who’ve worked on this project with and supported me through it, especially Richard and Mum. I couldn’t’ve done this without them. I’ve learned so much and gained more than I could’ve imagined (not financially unfortunately but in so many other ways). This project has changed my life and I’m beyond grateful.
The ‘little’ things – There were just a handful of things that I wanted to mention that there wasn’t really enough to say about for each of them to have their own bullet point but I didn’t want to leave out: my neighbour rescuing my cat when she got stuck up a tree even though he later told us he was afraid of heights; my brother doing a gorgeous job on creating a brand new leg for one of the china horses I got from my Dad (we think it got broken when we moved house); my therapist; the new cat tree and how adorable it is when all of the cats curl up on it at once; Tin Pan South still going ahead, if virtually rather than physically; the concerts I got to go to pre-pandemic; being able to dye my hair at home… I’m sure there are more but these are the ones that are coming to mind as I write this. Again, if I remember any others, I’ll come back and add them to the list.
So there you have it. This ended up a whole lot longer than I meant it to be but I think I am just really grateful. This year has been horrible in so many ways but it’s just made it really clear to me how good the good things are. And, as always, there have been some unexpected surprises along the way, things I never could’ve seen coming. I’m sure there are more things I could add but I’m gonna stop and go and do my Christmas wrapping. I hope you all have the best Christmas possible under these weird, hard circumstances. I hope you feel the things you need to feel and do things that make you feel good. Life is hard right now and no one should have to pretend otherwise. So I hope you’re looking after yourselves and I’m sending you big, virtual hugs.
Category: about me, animals, anxiety, autism, chronic fatigue syndrome, covid-19 pandemic, depression, diagnosis, emotions, favourites, holidays, medication, mental health, music, treatment, university Tagged: 2020, agents of shield, amazon prime, annerb, asd, autism, autism spectrum disorder, autistic, autistic adult, back to life, bad night, benefits, best friend, black labrador, cat, cat family, cats, christmas, christmas eve, clarity, coronavirus, covid-19, debut ep, disability, disability support, disabled, dog, ep, exercise, facetime, family, family of cats, fanfiction, film, films, financial support, friends, grateful, gratitude, health, honest, honest ep, hypermobile, hypermobility, kalie shorr, keyboard, lockdown, lockdown 2.0, lockdown 2020, loss, loss of a pet, lucky, masters degree, masters degree in songwriting, masters degree year two, masters part time, mother, movie, movies, mum, music, music video, music video release, music video shoot, netflix, netflix party, pandemic, pandemic 2020, pandemic anxiety, pet, pet loss, pets, physical health, piano, richard marc, richard sanderson, singer, singersongwriter, singersongwriter life, single, songwriter, sounds like hope, streaming, swimming, taylor swift, the changeling, tv, tv show, university, us election, us election 2020, zoom
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 September 12, 2020
Since the academic year is starting up again, I thought I’d write about my experience with getting support for my Masters Degree as a disabled student. The DSA (Disabled Student Allowance) process can be very difficult so, having been through it twice now, I thought I’d share my experience. I don’t know if I’ve had a good, bad, or typical experience but I thought that simply putting the experience out there might be helpful to anyone at the beginning of this process, to give them an idea of what may happen down the line. As I’ve already said, it’s difficult and tiring but that’s not to say that I would discourage someone from applying. I was just very naive going into it the first time and was blindsided by how complicated and stressful it was; I’m lucky to have had help going through this both times. Having support from sources such as DSA can be hugely beneficial but I wouldn’t want anyone going into the application process unaware so I thought I’d share my experience as I haven’t seen many accounts of the whole process…
I wrote about my first assessment in great detail here, so I suggest reading that but I’ll also sum it up here to make sure I’m sharing the full experience in one place. So… That first assessment was a complete disaster. The assessor was perfectly nice but when we got to discussing what support DSA was willing to offer me, it went downhill fast. They would offer me a laptop, but not one with an operating system required to run the programs I needed for my course because apparently that was a course specific need rather than a disability specific need despite the fact that I – a disabled student – needed them to do my course. They wouldn’t offer me any travel support towards commuting because I’d ‘chosen’ to live at home when I actually had to live at home because of my disabilities. And they have no direct contact with the universities themselves so they couldn’t offer any support through them. So, essentially, they weren’t going to offer me anything because my needs didn’t fit their guidelines, because my disability didn’t fit with their idea of disability. It was hugely frustrating and distressing and I left in tears. I felt completely let down and abandoned.
By the end of the assessment, I was so utterly distressed that the assessor told us that we could appeal, which we did. The second assessment was with a different person, a really lovely woman called Rebecca, and was much longer and in much more depth. We went through everything again in minute detail: from the necessary computer specifications to the exact details of an average university day’s travel. She went through all the possibilities and all the potential outcomes, as well as the potential roadblocks and the reasonings behind them. It was a lot of information but I did leave feeling more hopeful; I really felt like she was on the case, like she was really committed to helping me get as much support as possible. Her report went through several different people before reaching a senior SFE (Student Finance England). It was initially rejected but then, when we provided them with documentation proving I receive PIP (Personal Independence Payment), they changed their minds and granted me a new laptop, software and apps to help with my lectures, independent study, and mental health, and mentoring through the National Autistic Society (although it seems that, due to the pandemic, this service no longer exists). I didn’t get any support for the travel but I’m grateful for what I did get, plus the travel costs haven’t exactly been an issue over the last few months… From that second assessment, it was four months before I received the support I was awarded.
In my experience, the whole DSA process is very slow. It was slow when I went through it during my Bachelor’s Degree and it’s been even slower this time, presumably due to the pandemic. I started this process in January – much later than intended but my mental health was so bad that I couldn’t handle the in person assessment – and didn’t get the equipment until June. Then the laptop that arrived wasn’t the right one and so we had to spend another two weeks – and a somewhat ridiculous amount of emails proving that it was in fact the wrong one – organising the swap, insuring that I got the one that my DSA assessment had determined I needed. A couple of weeks later, the new laptop arrived but setting it up took much longer than it should have. This was due to how the people who’d previously worked on my laptop had set it up, making the transfer of all my files much more complicated and messy. It’s still not as sorted as I would like it to be but it is functional.
Factoring in all of this, had I been doing my Masters in one year rather than two, I would’ve had this equipment for less than a semester before I finished the course. Yes, this was affected by the pandemic, problems with the university Autism support person, and the late start in pursuing DSA but that was due to the reasons I was in need of support so it’s not the most efficient system in that regard: what happens if you’re too disabled by your disability to seek help?
The laptop and software that DSA have provided me with has been invaluable, especially since my laptop was dying a slow death around the time I received the new one. We didn’t get everything we were hoping for but it’s definitely better to have it than to not. So, having now been through this twice, I thought I’d offer some tips that would’ve been helpful to me before going through the process…
I hope this post is helpful for anyone considering or going through the process. I hope I haven’t made it sound too scary. I really do recommend it but I wouldn’t want anyone to be unaware of how difficult and stressful it can be. You deserve to get the support you need and I only want to make that easier, if only by arming you with information and advice. So, if you’re going through it, I wish you the best of luck and I’m rooting for you.
Category: anxiety, autism, chronic fatigue syndrome, covid-19 pandemic, depression, meltdowns, mental health, ocd, tips, university Tagged: actuallyautistic, actuallyborderline, actuallybpd, actuallydepressed, anxiety, anxiety disorder, asd, assessment, autism, autism spectrum disorder, autism support, autistic, autistic adult, autistic student, borderline personality disorder, bpd, coronavirus, covid-19, degree, depression, disability, disability stigma, disability support, disabled, disabled student, disabled student allowance, dsa, dsa assessment, gad, general anxiety disorder, invisible disability, invisible illness, lockdown 2020, masters degree, masters part time, mental health, mental illness, mental illness stigma, neurodiverse, neurodiversity, obsessive compulsive disorder, ocd, pandemic, pandemic 2020, part time, part time masters student, part time student, personal independence payment, pip, sfe, stigma, student finance england, tips, uni, university, university support
Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder, as well as several mental health issues. I’m a singersongwriter (and currently studying for a Masters in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is now available on iTunes and Spotify, with all proceeds going to Young Minds.
I’m currently releasing my first EP, Honest, track by track and all five songs are now available on all major music platforms. However, there’s still more content to come…