Posted on November 28, 2020
As opposed to my usual week-in-the-life posts, I thought I’d do something slightly different this time and zoom in on what it’s like to be an autistic student at university (one doing an MA in COVID-19 times anyway). This is obviously just my experience – as the saying goes, ‘if you’ve met one autistic person, you’ve met one autistic person’ – but I thought it might be an interesting post to write. I feel like it’s so important to share our experiences as autistic people, especially when media is being created that can be harmful to us (i.e. everything that’s been going on with Sia’s new film – I feel like I should be writing about that but I still don’t know how to; it makes me so upset that I can’t really write anything that feels articulate enough to represent the significance of the issue). So I hope this is an interesting read.
THE NIGHT BEFORE
Monday was hugely busy, with a production session, two doctors appointments, and working on the essay of the module in the spaces between. I’ve been working on it somewhat steadily but since I have a feedback session coming up, I’ve been a bit more random in my approach to writing it – fitting writing time in wherever I can or just writing about certain things as they occur to me – so that I can get as much out of that session as possible.
So it was one of those days where I barely had time to think.
On Monday evenings, the Masters course have a song sharing session between 7.30pm and 9.30pm. I’ve been a couple of times but I tend to find it too much. I’m most creative at night and so filling my head with new songs and song analysis right before I try to sleep really messes up my ability to sleep, which I have to try to do relatively early with my first class on a Tuesday at 9am. And if I don’t get enough sleep on a Monday night, I’m useless in every class on the one day I have classes. So, unless there’s a really good reason, I can’t really prioritise them.
I also find them quite hard socially: as much as doing the Masters course part time was the right thing for me, it has meant that for both years, I’ve never quite felt part of the group. There’s a handful of us in the same position and I can’t speak for them but it’s always left me feeling a bit ‘other,’ like I don’t really fit anywhere – not quite part of the group in the first year and even less part of the group in this second year. Everyone on the course is lovely but it does have a pretty big impact on the social side of the course. And when you struggle with feeling like you don’t fit in, it’s hard to feel it in yet another area of your life. So sometimes that factor just makes it too hard on my mental health. Maybe it will feel easier when one of my best friends rejoins the course in January.
So, instead, I used the time to do some more work on my essay before emailing everything required for the feedback session to my tutor (I wanted to make sure he had enough time to go through it all before we met on Wednesday afternoon). Then I tried to unwind a bit. Somehow I still ended up going to bed too late – not that 11pm is hugely late but for me, the night before a class, it’s on the border of being dangerously late.
I have a prescription for sleeping pills because my anti-depressants can cause problems with my sleep but I try to avoid them where I can. Having said that, knowing how exhausting a uni day can be, I usually take one the night before to make sure I’ve had enough sleep to give me the best chance of getting through said long uni day.
THE DAY ITSELF
I wouldn’t say I slept well and I struggled to get up but I’ve had worse nights so I just tried to push through the fatigue. I got dressed and made up and then collapsed on the sofa for a rest. Standing for the time it takes to shower, get dressed, and do my make up makes me feel weak, and lightheaded, and sick – something we’re still investigating with, unfortunately, very little progress – but getting up as early as I had meant that I did have enough time for some recovery time. It’s all down to planning. My life is dependent on planning. I also managed to eat some breakfast and take all of my pills. I’m taking quite a few at the moment – more than the ‘normal’ ones that help me maintain my mental health – because of a Vitamin D deficiency and horrible nerve pain down my left side (I’ve been waiting for a hospital appointment for the latter since about April or May, which may be my personal record for appointment waiting times).
My seminar started at nine (if you’ve read my previous university posts, you’ll remember that I’m doing all of my classes online this semester). My normal tutor (who is legitimately one of the loveliest people I’ve ever met) started the class before handing us over to a guest tutor who gave us a two hour class on arranging strings and horns. He was incredibly knowledgeable and engaging and so it was really interesting. Plus, Tiger came and sat with me for most of it, which was very nice. University with cats is a definite advantage of online lectures.
I was struggling to concentrate by the end of the class so I was relieved when we wrapped up. It was a lot of knowledge and sensory information to try to process and sort through and digest. I felt more than a bit dazed. Fortunately, the session was recorded so I can either go back and listen to it in shorter sections or go back and search for something specific.
My next class wasn’t until five so I had rather a lot of time to fill. Pre-pandemic, I’d hang out at uni and do cowrites, go to the favourite local coffee shop with friends, or work on whatever was on the list at the time but I’m finding it much harder to use this time effectively, whether that’s due to having my classes online or down to the pandemic just really screwing with my brain. Stuff that wasn’t hard before is now and the only thing I can put it down to is the pandemic, even if I don’t know precisely why. All I know is that it’s a weird time and so it shouldn’t be surprising that certain things aren’t the same as they were before. But it’s still frustrating to have such a big block of time that I could be using productively and not have my brain cooperate. Early in the semester, I ended up staring at my laptop screen, desperately trying to work on stuff and just not being able to. I got more and more frustrated and demoralised and eventually I just had to accept that this is not productive time. So I’ve been trying to come up with ways to fill it that aren’t too demanding but still feel like there’s a point to them; I don’t want to feel like I’ve wasted it by just staring at my phone or mindlessly jumping between the open windows on my laptop because that’s just not good for my general mental health. So I’ve been trying things like reading or watching new movies or TV shows – these have been good sources of inspiration in a time where I’ve struggled to find inspiration – or having a nap if I need one… Things that don’t require a lot of energy but still feel worthwhile (most of the time).
I did a quick scroll through my social medias to see if there was anything that needed replying to and then did some admin work: replying to emails, updating my bullet journal, and so on. Just as I was about to move onto something else, I got a load of notifications from social media, all Taylor Swift announcing her acoustic concert film going up on Disney+, folklore: the long pond studio sessions. That was so exciting that it temporarily scrambled my brain, in both a good and a bad way. As an autistic person, I’m really not a fan of surprise drops because I just get hit by a tidal wave of emotions and I feel so overwhelmed that I actually feel sick. I don’t want to sound ungrateful for the film because I am so, so grateful for all that Taylor has been putting out during the pandemic (her work really has been one of the things that’s helped me during this time) but the suddenness with which she’s been announcing things has been difficult because that doesn’t give me enough time to do the emotional processing that I need to do. So although I eventually settled into being really excited, I spent a lot of the day feeling painfully twisted up and anxious over the mess of emotion I was experiencing.
That did leave me floundering quite a bit, I have to confess. So, to try and take my mind off of everything I was feeling, my Mum and I caught up with the latest episode of His Dark Materials. It did help a bit. It’s such a great show; the casting, the acting, the sets, the interwoven storylines, etc are all so beautifully done. I loved the first series and I’m really enjoying the second one. I love Dafne Keen as Lyra (I so related to Lyra’s reaction to popcorn – it was freaking hilarious) and Amir Wilson as Will but I think it was Ruth Wilson as Marissa Coulter and Lin-Manuel Miranda as Lee Scoresby who really stole the show this week (pun actually not intended – if you know me, you’ll know I love a good pun). Their big scene together was just so powerful and how Ruth Wilson played the aftermath was particularly emotive.
I spent an hour or so working on a new blog post but after a while, I was just getting slower and slower and eventually I gave up and had a nap. I slept for about two hours before struggling up for my second class at five. I could’ve easily slept longer but I did my best to shake it off and concentrate on the workshop. This is where we (in this case, all of the 100% online students – the rest are blended and do the workshop in person onsite) share the songs we’ve been working on over the week and get feedback from the rest of the group. For most of the semester, we’ve had briefs each week but now we’re just working on whatever’s right for us. So, for example, I didn’t have a song to present because I’ve been working on the feedback for previous songs and the essay, rather than a new song (although I did recently write a rap, although I’m not sure whether I ever want anyone to hear it). Everyone else had songs to play though so I could still participate and give feedback, although I’m not sure how helpful I was because of how tired I was. But I tried. Some days I was just have less energy to work with than others.
I had an hour break before the evening session, which runs from seven to nine; they’re technically extra-curricular but I try to attend them when I can, especially now that they’re online and therefore more accessible. I don’t want to miss out on anything I don’t have to.
During my break, I had a quick dinner and catch up with my parents. The Grammy nominations had also been announced so I went through those. I’m super pleased for Taylor Swift: folklore is such a great album. Six nominations – Album of the Year, Song of the Year, Best Pop Solo Performance, Best Pop Duo/Group Performance, Best Pop Vocal Album, Best Song Written For Visual Media – is incredible and I’m really excited for her. Personally, I think she deserves at least several of those, especially considering the other nominees. I’m absolutely psyched for Ingrid Andress and her three nominations: Best New Artist, Best Country Song, and Best Country Album. I’ve been following her for years, having met her in Nashville at least a couple of years before her album was released. She’s an amazing writer and it would be just so awesome for her to win even one Grammy award this early in her career. But I’m concerned about her chances; she has some serious competition in all of those categories. The Best Country Song category, for example, is incredible, full of so many amazing songwriters that I love so much: Natalie Hemby (‘Bluebird’ by Miranda Lambert and ‘Crowded Table’ by The Highwomen, a group of which she’s a member), Maren Morris (‘The Bones’), and then Ingrid, of course. I want them all to win it. I was disappointed that Halsey still hasn’t been nominated. Manic is such an incredible album, as is Badlands (Live from Webster Hall), and it’s so frustrating that she doesn’t get the industry recognition she deserves. Especially given how popular ‘Without Me’ was, I’m really shocked that she’s never been nominated.
I just made it in time for the late session, which involved two of last years graduates presenting their final projects, one about using songwriting to explore different aspects of personality and the other about the experience of their gender transitioning and how sharing that story has the potential to increase understanding and empathy and break down barriers. They were both really cool projects but it was also massively helpful to see their processes, how they’d developed their ideas and researched them and how that research had lead them to writing the songs they wrote. It was fascinating and I definitely feel more prepared for my own project. I’ve got several ideas I’ve been turning over and the presentations have been helpful in my decision making process too. So I got a lot out of it, even if I was completely exhausted by the time the session finished.
It was about half nine and I probably could’ve gone straight to bed but I went and spent some time with my Mum, watching some TV together as we both wound down from the day. But it wasn’t long before we were both falling asleep so we put the cats to bed (they sleep in the kitchen so that we’re not woken up at five – the time they start demanding breakfast) and headed to bed ourselves.
THE NEXT MORNING
I’m not one of sleeping in so I always set an alarm. Then I can get up and start doing things (I have a real problem with needing to be productive) but usually, the day after a uni day, I sleep through the alarms I set. It doesn’t seem to change anything though. I keep setting alarms and sleeping through them. But that morning was special. I dragged myself out of bed at eight to watch folklore: the long pond studio sessions, as soon as it was available. It wasn’t particularly enjoyable to get up when I was so exhausted but it was absolutely worth it. The film was amazing, so amazing that I still haven’t figured out how to put all my feelings into words yet.
Since this post is just about my day at uni, I won’t write much more but just as I wrote about the Monday night, I thought I’d write about the Wednesday morning. Usually there isn’t a brand new Taylor Swift film to watch so I try to rest and recover my energy – physical, mental, and emotional – from the day before. As I said, I’m struggling with this need to be productive all of the time so with that in mind, I try to schedule undemanding tasks for Wednesdays. That particular day, I had a couple of half hour tutorials with tutors, so I spent the morning making sure I was ready for those. I’d already made notes of what I want to ask and discuss so I spent the rest of the morning going through those to make sure I felt as prepared as possible.
So, as you can probably tell, it takes a lot of planning and prioritising and rationing of energy to make it possible for me to go (or at the moment, ‘go’) to university, to make it possible to live my life in the most positive and productive (to a healthy extent) way. This isn’t an unusual day for me. While stuff like big Taylor Swift announcements and the Grammy nominations don’t happen every day, there’s often something that can cause emotional reactions like the ones described and I deal with fatigue and anxiety everyday. It’s one big juggling act. Every day. One enormous, exhausting juggling act every day.
Category: about me, animals, anxiety, autism, chronic fatigue syndrome, covid-19 pandemic, emotions, medication, mental health, music, sleep, university, writing Tagged: ableism, anxiety, arrangement, asd, autism, autism awareness, autism spectrum disorder, autistic, autistic adult, autistic student, blog post, blog writing, cat, cfs, chronic fatigue, chronic fatigue syndrome, concentration, dafne keen, day in my life, depression, distraction, distress, emotional, emotional overload, emotional overwhelm, emotions, energy, energy levels, essay, essay writing, family of cats, fatigue, feedback, feelings, final project, focus, folklore, folklore: the long pond studio sessions, friend, friends, grammy 2021 nominations, grammys, grammys 2021, halsey, his dark materials, ingrid andress, instrumentation, lin-manuel miranda, lockdown, lockdown 2020, major repertoire project, maren morris, masters, masters degree, masters degree in songwriting, masters degree year two, masters part time, medication, mental health, music, musical arrangement, my cats, nap, natalie hemby, nerve pain, online classes, online learning, online university, overloaded, overwhelmed, pandemic, pandemic 2020, part time masters student, part time student, prioritising, productivity, rationing energy, recovery, recovery time, rest, routine, ruth wilson, schedule, seminar, sensory information, sensory overload, sensory sensitivity, sia, side effects, sleep, sleep schedule, sleepiness, sleeping, social media, socialising, songwriter, songwriting, student, taylor swift, time management, tired, tutorial, tv show, university, visibility, vitamin d, vitamin deficiency, waiting list, workshop, writing
Posted on August 19, 2018
This is something I’ve been meaning to write about for a while but it’s such a big topic that I was very daunted by just how much I needed to include. I’d open a word document, stare at it for ten minutes, and then switch to something else. You’ll see what I mean. Getting a diagnosis is a complicated and emotional process that is so different for everyone but I had no idea how difficult it would be when we started pursuing it. So I thought I’d write out my experience, just to put out into the world one version of the story. Maybe yours is similar, maybe it’s different. Hopefully you’ll get something out of it either way. And if you’re trying to get one, maybe this will give you some idea of the hurdles. I don’t want to scare anyone off; it was a brutal experience but it was absolutely life changing and life saving, both for my mental health and for who I am as a person.
I’m going to split this into two posts because although they’re linked, the processes for getting the mental health diagnoses and getting the ASD diagnosis were very different for me. I don’t know if that’s the same for everyone. This post will be about getting the ASD diagnosis and follows on from the one about my mental health diagnoses. If you’ve read that one already, you’ll know that it took several years to get to that point.
During our search – mine and my Mum’s – for an explanation as to why I was struggling so much, Autism came up several times. We didn’t pursue it straight away because I didn’t fit what we knew of it and because multiple health professionals had dismissed it. So we focussed on the mental health perspective and managed to get those diagnoses in January 2015. But it kept coming up and after talking to practically everyone we knew, we ended up at ASSERT, a local charity that supports people with Autism Spectrum Disorder. On their advice, we contacted the Brighton and Hove Neurobehavioural Service and that resulted in an assessment (in August 2015).
The assessment itself was pretty intense: three hours of answering questions about my life and my experiences, followed up by another appointment where it was all explained to me. The woman who assessed me was lovely, which made it easier, but it was exhausting. Afterwards, I received an eight page report with all the relevant information. I know I’ve already written a post about the presentation of Autism in women but this is the more detailed, clinical side of it, to give you an idea of what was asked and what went into getting an Autism diagnosis.
The questions – and the report – were broken down into several sections:
As a child, me and my brother played make believe games that involved the creation of very elaborate worlds, with characters and histories, and they often lasted for months, if not years. My other staple ‘game’ was arranging my toy animals into “carefully crafted scenes.” I did this over and over again, in a “notably ordered and systemised” way.
I was incredibly shy and although my speech and language were ‘well developed,’ I did struggle socially. I didn’t have many friends but the friendships I made were incredibly important to me (“the very commonly observed capacity for young women on the spectrum to make very intense, uncompromising attachments to individuals”) and the loss of those connections was “deeply traumatic.”
I did well in school because I had “an unyielding need for perfection” and a “capacity for intense engagement in subjects.” No one (including me) noticed any difficulties because I was quiet and hardworking (“like many young women on the spectrum”) but having said that, I was absolutely exhausted by school. I’d get home, collapse on the sofa, and kind of zone out, almost leaving my body. Time would pass and while I was still functional, it felt like I was on autopilot until I ‘returned’ to my body. That was how I processed school and how it completely exhausted me.
The one thing that I did notice and struggle with was my absolute need to follow every rule: “Lauren has a lifelong sense of right and wrong and cannot deviate from rules.” I’ve always struggled with the way people seem to know which rules are important, who they apply to, and so on. And even when there was good reason to break a rule, I could not do it.
“Moving to the chaotic, unstructured, unfamiliar sixth form [was] deeply traumatic. It was at this point that her meltdowns and mental health became of acute, identifiable concern.” Couldn’t have put it better myself.
RECIPROCAL SOCIAL COMMUNICATION
“Although Lauren has worked hard to integrate socially, she has clear lifelong social difference.” Socialising has always felt incredibly complicated and stressful. “Lauren has the almost universal autistic sense of feeling ‘alien’ (or as if behind glass) from other people. She feels exhausted by the social world. People are mysterious and chaotic to her, and although she is highly observant of others and learns and copies social behaviours, the possibility of unpredictable social behaviour provokes acute anxiety. She shows evidence of the triad of impairment but this is scaffolded and obscured by her intelligence and vigilance.”
Eye contact is tiring and uncomfortable. It feels so intimate – too intimate. And I don’t know which eye you’re supposed to look at.
I’ve always struggled with making phone calls, particularly when it’s someone I don’t know. Because I’m only hearing someone’s voice, I feel like I’m not getting enough information to ‘read’ the social interaction and so I get really anxious about saying the wrong thing or getting overwhelmed and missing things. I can just about handle it with people I know, where I’ve learned the ‘conversational rhythm.’
It’s a myth that people with Autism aren’t empathetic. I’ve always felt like my empathy is overwhelmingly strong, to the point where it can actually incapacitate me. For example, after finding out that a friend was severely ill, I was so distressed that I was barely able to get out of bed for about three days: “[Lauren] is prone to fixating on helping people and is often very upset when this is not possible. Women on the spectrum are often highly sensitive to suffering in others and are drawn to the ‘caring’ role. This can leave them socially and emotionally vulnerable.”
I get overwhelmed very quickly, because I can’t process things as quickly as they happen. The best way I’ve found to process stuff (experiences, sensations, emotions) is to write everything down: “Lauren writes everything down in micro-detail and through this process she has learnt much about the human state and the social world that is not intuitive. The detail and perseverative nature of this recording is authentically aspergic.”
RESTRICTIVE AND REPETITIVE BEHAVIOURS (NEED FOR SAMENESS)
I’ve always had the intense focus and ‘restricted interests’ that people often associate with Autism. I’ve bounced from one to another to another my whole life. When I was twelve, I wrote a twenty thousand word story that I researched in “encyclopaedic detail.” I even knew the longitude and latitude of where all the characters were throughout the story. Every detail is important: “Authenticity is of enormous importance to her.” A truer statement was never made and it’s true for every part of my life, from my songwriting to the clothes I wear.
I’ve also always had a “strong need for sameness and routine.” I didn’t even really realise it until I was asked. Everything I ‘routinely’ do has a very precise order: “She has certain non-functional rituals that she needs to perform in order to feel safe and soothed.” And any change – big or small – can send me into a spiral of anxiety, which can lead to a meltdown. “She has a need for perseverative repetitive activity to soothe her anxiety and dampen the flood of intrusive information. She has the same TV programs on and listens to the same audiobooks again and again.”
I have always been “highly sensitive to sensory phenomena.” I struggle to manage and process se nsory information but with sound and taste in particular. But all of my ‘sensory sensitivities’ increase when I’m under stress.
“[Lauren] appears to be particularly affected by multiple streams of sensory experience: finding, for example, places where people gather cacophonous, overwhelming and she is swamped in anxiety about all the possible permutations of each person’s life.” When I walk down the street, I’m overwhelmed by the fact that every person I pass has favourite colours, foods they don’t like, phone numbers they can’t remember, important dates coming up, and so on and so on and so on. It’s beautiful and terrifying and exhausting.
One of my biggest issues sensitivity-wise is with food and I’ve struggled with it all my life. I’m very sensitive to taste and texture so I can only eat plain foods and I hate having different foods touch each other. I find pretty much everything to do with food overwhelming: the ingredients in a meal, the preparation of food, all the sensory information… This is apparently a common autistic experience.
“Some evidence of hypermobility which is a unifying diagnosis with autism.”
“The essential features of ASD as specified in DSM-V are persistent, pervasive and sustained impairment in reciprocal social communication and social interaction; and restricted, repetitive patterns of behaviour, interests, or activities and may be most apparent in difficulties in processing and responding to complex social cues. These symptoms are present from early childhood and limit or impair everyday functioning.” My assessor took in everything we’d told her and determined that I met the diagnostic criteria for Autism Spectrum Disorder, at level one, which is ‘requiring support.’ I meet all the difficulties likely to be experienced at this level.
“It is apparent that Lauren also has issues pertaining to personality disorder. She was vulnerable to the development of personality disruption due to the complexities of her developmental difference and her experience growing up (essentially as a ‘square peg in a round hole’) was sufficiently complex and invalidating as to cause her enduring distress and propensity for emotional intensity.”
Getting the diagnosis itself was very affirming but the conclusion of the report was also really positive: “She has amazing potential and I am really hopeful that, in time, this explanation will come to be a meaningful map for a resilient and contented future.”
This isn’t a complete report, just some snippets to give you an idea of what the session was like and some of the traits that make up an Autism diagnosis. It’s not a checklist or the ASD criteria. I just remember having no idea what was going to happen and the anxiety that that caused me. So if I can make it less scary for someone else, that’s something I really want to do.
(Again, no relevant photos but here are some from around that time.)
Category: about me, bpd, diagnosis, emotions, event, school Tagged: actuallyautistic, anxiety, asd, autism, autism awareness, autism diagnosis, autism in girls, autism in women, autism spectrum disorder, autistic, autistic adult, diagnostic process, sensory, sensory information, sensory sensitivity
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…