I’ve loved music as long as I can remember… from singing along to “Shout” by Tears for Fears on MTV before I could properly talk to stim-listening to the same Manic Street Preachers song repeatedly, music has featured in my life in one way, shape or form.
My first ever concert experience was 25 years ago today – 15th July 1993 at Melody Fair Theatre in North Tonawanda, New York. I was 8 years old and attended The Moody Blues “A Night at Red Rocks” tour, my first outing alone with my parents since my brother was born a little over four years prior (he stayed with my grandparents while we went to the concert)… I remember feeling really excited to get the alone time with my parents, and I really liked The Moody Blues’ music.
(Before anyone decides to poke fun or anything, how many 8-year-olds do you know with their own taste in music that was not at all influenced by their parents?)
Because this was 25 years ago and I’ve slept a lot since then, I only remember snippets from the whole experience. Melody Fair had a circular stage in the middle of a dome-shaped structure which slowly rotated throughout the concert (the stage, not the building!)… at one point as the band rotated past us, bassist John Lodge waved at me! I remember one of my foam earplugs fell out (knowing me, I was probably fiddling with it because it felt funny or something) and I couldn’t believe how loud it was. I looked to my dad for help and he whisked me out of my seat to the rear of the auditorium to put my earplug back in and settle me down. We went back in and enjoyed the rest of the show. I loved the feeling of being immersed in the music and seeing a band that I had only ever seen in music videos on TV in person.
We didn’t know back then that I was autistic or had sensory sensitivities; my dad was acting as a concerned and attentive parent, ensuring that his young daughter’s hearing was protected.
Fast forward 25 years.
I can’t remember how many concerts I’ve been to, but I’ve seen The All-American Rejects nine times between 2003-2012 and Manic Street Preachers nine times as well between 2010-2018, so that’s at least 18 concerts… Roger Waters three times (twice The Wall 2011 & 2013 and once US+THEM 2018)… Flight of the Conchords twice (2010 & 2018)… you get the picture.
The phrase “I like going to concerts” is a bit of a misnomer. Being a pedantic amateur linguist, the more accurate phrase for me would be “I like actually being in my seat and watching the show in my own little bubble and ignoring the rest of the world around me while immersed in the music & lights”. I have continued with wearing earplugs to concerts, more recently really enjoying using Flare Audio Isolate Mini earplugs, as the sound isn’t muffled and you end up listening through bone conduction. The rumbling bass and pounding drumbeats reverberate through me and the lighting is colourful and fun to watch. Being at the concert itself is a full-body stimming experience, which may be overwhelming for some, but when in the right headspace, I love it.
However, it’s the before and after that almost always ruins the enjoyable experience for me.
I’ll use our most recent experience attending the Flight of the Conchords show in Birmingham a few weeks ago as a prime example of what I struggle with most.
We were in the midst of the seemingly neverending heatwave in the UK… temperatures were between 84-90°F (29-32°C). Very little breeze. Not really humid, but quite uncomfortable. My husband and I arrived at the National Exhibition Centre (NEC) complex in Birmingham, parked the car and walked towards Genting Arena. It felt like it was taking absolutely ages to get to our destination… the heat certainly wasn’t helping things. We stopped to get something to eat about 3/4 of the way to the arena itself at The Piazza within the NEC itself. Even going inside, there was no respite from the heat – no air conditioning, no real air movement at all. The restaurant we stopped at wasn’t very busy to start, but quite soon loads more people arrived and the quiet table we had to ourselves soon had people sitting at every other table near us, and because they were quite close together, individuals would invariably brush past or bump into me as they were walking to their tables from ordering within the restaurant. Once or twice, I could forgive, but by the fifth or sixth time, it was getting my hackles up, especially as I was still trying to finish my dinner. As soon as we were finished, we moved away from the restaurant’s seating area and sat at another small table in the Piazza’s open area, spending a little time catching up on Facebook and the news in general for several minutes before heading to the arena.
The walk to the arena wasn’t too bad, other than having to negotiate walking around pairs and small groups of people, which isn’t easy when you have subtle proprioceptive difficulties and somewhat dyspraxic tendencies that are exacerbated by being fatigued and overheated.
Following the Manchester Arena attack last year, security checks at concert venues have been ramped up, which I’m absolutely fine with; however, I am always very self-conscious when I find myself fumbling with the zippers on my rucksack and there’s a queue of people behind me watching, as well as the security officer waiting for me to get my bag open… this little spike of anxiety makes me less dexterous and fumble more, which I then think makes me look guilty somehow, even though I know I’m not bringing anything dangerous or illegal in with me.
Once beyond security, the overwhelm begins. The arena’s Forum Live area is “the place to grab some food, meet friends for a drink and listen to some fantastic unsigned acts on the Forum Live stage before the main event”… food stands, alcohol purveyors, merchandise stands, music performers, and even charity collectors from Guide Dogs UK – the poor dogs looked so miserable, it was so loud and hot. There were people everywhere… it was so noisy, and trying to navigate through the crowd was causing another anxiety spike. We joined a sort-of organised crowd queue system in front of the merchandise stand, which gave us time to have a look at what was available to buy. I settled on a set of enamel pins – Bret & Jemaine’s faces and a stylised FOTC logo like the pop art LOVE sculpture.
After getting a pint of cider, we found our seats and settled in for the show. I finally was able to settle down and feel calm.
Eugene Mirman opened the show and was very funny. Having seen him in FOTC’s HBO show and being a voice actor for shows like Archer and Bob’s Burgers, it was a bit surreal to see him in person.
The Conchords took the stage to a warm reception from the crowd. The stage set was very simple – a couple of chairs, microphones and their instruments (including a piano) – and the plain backdrop behind the duo acted as a canvas for a colourful PARcan light show. The show itself was absolutely brilliant and I thoroughly enjoyed it… some new songs we’d never heard before mixed in with several familiar tunes from the TV show.
Then the show ended and it was time to depart. The difference between the NEC and the NIA (now Arena Birmingham) is that the NEC, while near the Birmingham International Airport railway station, I don’t think many people travelled by train; due to the show’s scheduled end time, the last train would have already left. The NIA is within short walking distance to both New Street and Snow Hill stations, and thus people tend to disperse in multiple directions from the NIA, whereas from the NEC, it seemed that the majority of people were heading in the same direction towards the car parks.
Walking out of the arena, I kept my earplugs in and I was so glad I did. Even through my earplugs, it sounded like a cacophony walking through the Forum Live area towards the arena exits, almost like the roar of the ocean in a storm. I clung to my husband so we didn’t lose each other in the crowd. As soon as we got outside, I took myself off the footpath onto the grass to catch my breath. I had to build myself up for the long walk back to the car.
Along the footpath to the car parks, there were pedestrian tunnels and pinch points along the way, which led to the throng of people to stop outright periodically. Even though it was getting close to 11pm by this point, it was still quite stiflingly warm and I was exhausted… I just wanted to get back to the car. I didn’t want to be stuck in amongst the crowd of people, hot and sticky and worn out.
When we finally got back to the car, trying to leave was nigh on impossible. The cars were queuing, pulling out of their car parking spaces cutting others off rudely, and only inching forwards every few minutes. We were stationary for nearly 45 minutes before we noticed that a second exit to the car park was opened, and we managed to loop the car around to leave that way. Due to traffic jams (unclear as to the cause), we ended up taking a little detour to get back on the motorway we needed to head home whilst avoiding the long queues on the roads off the NEC campus.
Granted, this was highly unusual and we’ve never experienced a departure from a gig like this… the last time I was stuck leaving an event was easily back when I was still living in Western New York and was trying to leave a Sabres game from downtown Buffalo.
The sensory overwhelm and stress caused by all of this almost made me completely forget about the enjoyable experience I had at the show itself.
My biggest frustration is that being autistic and having sensory needs is not quite recognised by venues like this, nor even by government support offices (I tried applying for Personal Independence Payments to have evidence of need for access, but was declined because I’m too capable of looking after myself… that will be another blog for another day). The NEC’s website has a section about accessibility for those with physical needs and disabilities, but no indication of how to support autistic guests. Having a separate accessible entrance & exit and perhaps a shuttle between the car park & venue would have greatly reduced the stress I experienced. I suppose it’s about raising these kinds of issues and making these venues aware of how they could support guests with invisible disabilities and conditions… but whether they would be open to accommodating us remains to be seen.
I started this draft back in April.
I got as far as the title.
Executive Functions include basic cognitive processes such as attentional control, cognitive inhibition, inhibitory control, working memory, and cognitive flexibility.
Autistic/Aspie Burnout was brilliantly defined by Planet Autism Blog as: “a colloquial term, that the clinical world doesn’t seem to acknowledge as a genuine part of the autistic spectrum, resulting from the attempts to ‘be normal’, fit in and keep up.”
I won’t go into great detail about what specifically happened, but after several months of desperately “treading water” at work, an angry parent aimed their acerbity towards the local authority directly to me in a quite public and personal manner. Having endured years of working as a front-line social worker and various complex situations in SEND, this was the first time that it was made personal, despite me figuratively bending over backwards to sort this case out in a way that the parent would be happy and, of paramount importance, the child would have their needs best met.
When this all kicked off, I was shocked and rendered speechless; I could not believe what I was reading. When I flagged this up to my manager, she was quite comforting and told me to not worry about it (let’s face it – this advice DOES NOT WORK for me). I went home and told my husband about it, and he too said to not worry about it (see above). The next day, we found out that this parent posted his venomous letter publicly to Facebook. Thankfully, the local authority has a team that can approach Facebook to have such posts removed; however, in my mind, it was out there. My name was out there with libelous information about my professionalism and my dedication to my work. I was floored… I was crushed. I was emotionally numb over the course of the weekend, but come Monday, the start of the next work week, I couldn’t bring myself to leave the house. By Tuesday, I couldn’t stop crying. I phoned my GP and was given an urgent appointment, resulting in me being signed off work with stress. My GP even said to me, “I’ve never seen you this low.” When I explained everything that happened, she was very sweet and empathetic and insisted that I be signed off work.
Now, to tie this all in with the title of the blog (that’s why you came here, after all, not to read my long-winded whinge about how a parent was mean to me).
Following my diagnosis nearly one year ago, one could argue that very little in my life changed – I was still me, after all – but I would argue that everything in my life changed. My understanding of myself changed massively. Suddenly, the things I silently suffered with, I had the language to be able to explain them rather than just “deal with it” whilst it was silently causing me agony with an “oh, it’s not a big deal” attitude when it was a massive deal to me. I gained a network of friends – my AsperSisters – who shared my experiences and provided the validation I had craved for so much of my life.
Whilst so many positives came from my diagnosis, there still was a lot of new information flying around my head and I became even more aware of my particular set of needs. Despite identifying these things and the best way to manage them, I kept pushing myself in my usual way… which has led to the burnout.
The burnout where migraines prevent me from getting out of bed, let alone doing anything remotely social and otherwise enjoyable. The burnout where these migraines led to me being physically unwell – a new symptom which I had never experienced before (bearing in mind I’ve suffered from migraines since age 14). The burnout where I am left feeling feeble and useless, not only to myself but to others who rely on me.
The burnout led to the regression. The regression is where things that were once easily completed now take much more cognitive and physical energy. The biggest area in my life where the regression has hit hard is cleaning the house. [Now I will clarify this by saying we don’t live in a filthy house which is on the verge of being condemned, but rather it’s in a perpetual state of “organised chaos”.] I can just about muster the energy to do a superficial clean & tidy if someone is coming round to the house, but doing a full-blown cleaning blitz like I have done in the past requires too much energy. I’m not sure if it’s just because the house is a lot more space to look after than my previous residences and I just can’t mentally break the task down into smaller pieces or what, but there is some sort of disconnect where I just get stuck.
Another area of regression is going shopping at the grocery store or being out in town. It’s not like I particularly enjoy either of these things, but I could certainly just about cope for enough time to get done what I need to and then leave without incident. Now, I will actively wait to go grocery shopping until a guaranteed quiet time (usually around 7pm Friday or Saturday and either 10am or 2pm on a Sunday) and sometimes have had to resort to putting in my earplugs or headphones in order to minimise sensory overload (noisy kids or the rickety stock trolleys staff drag along with squeaking wheels and rattling metal!). The only time we go into town now is when we get haircuts. Whereas before we would wander amongst the shops and look around for a while, our routine now is to go for an early lunch at Jane’s Pantry, maybe nip into Boots first to pick up a few items, then go home.
Going to Pilates once a week has also taken a back seat whilst I’ve been recuperating from this burnout. We are very lucky to have an amazing Pilates instructor local to us and we enjoy her style of teaching, as she looks after every participant individually and advises how to do the exercises in a way that is best for you. Because I’m no longer a member of the gym where we first started going to her classes, we instead go to one of her sessions at a village hall 6.5 miles away from home. However, by the evening on the day of the class, I just don’t have the energy to sit in the traffic that we inevitably hit to get there… trying to get there before the 6pm start to establish ourselves in our preferred place in the hall means leaving ours around 5:20pm… it should not take half an hour to travel 6.5 miles, but it does and it just takes any energy I had out of me. You know The Spoon Theory? Let’s say by 5pm I have about 3 spoons left for the day; 30 minutes of rush hour traffic can easily take away all 3 of those spoons, leaving me susceptible to meltdown.
I also feel bad that I’ve let a new friend down, though she says that she understands. I met Izzie at the Autism Post-Diagnostic Group I attended from March to April through the NHS, and we struck up a friendship quite quickly. She is working on a young adult fantasy novel and I offered to do some reviewing and editing for her whilst she worked on it. I was captivated by her writing and really enjoyed reading it as I was editing, but found that I was only able to do both for a short space of time. It got to the point where she would spend a fair amount of time doing more writing and re-writing that the document that I had to review was no longer current. She had given me the memory stick again and it has just sat in my laptop bag, untouched, for several weeks. I gave it back to her yesterday (after a frantic search because it wasn’t in the part of my laptop bag that I thought I had left it in!) and apologised profusely that I hadn’t done any more reviewing or editing on it. Izzie is so lovely and said it was really okay, but I still felt bad. I told her that before she wants to submit it to give it to me with a deadline, and that whatever I get done prior to that deadline will be however much I actually do. I really think she’s got amazing potential and I hope someone will want to publish it for her.
Hell, even WRITING, something that I thoroughly enjoy, has been hit by this regression cloud. It categorically should not have taken me nearly FOUR MONTHS to write this flippin’ blog, but here we are on the 1st of August and I’m only getting it finished and published now. I’m hoping that this will knock me out of the funk that I’ve been in…
I have always been one to do too much to prove that I’m not lazy and to overcompensate when I feel like I could be misconstrued as such. Now that I understand that there is an explanation behind my reduced energy levels, recognise what autistic burnout is and how it presents in me, I’m hoping that I’ll be able to move forward in a more positive way. I will do my best to do more that makes me happy and less of what drains me and makes me miserable.
Thanks for sticking with me during this whinge and moan. 🙂 🌸