A brilliant post from a fellow advocate which explains my current frustrations within the online autistic community. 🌸
I hope my message comes across properly. I spent 20 minutes writing this before going to sleep because I really needed to get it off my chest.
Around this time 6 months ago, I was at my student house on my own as everyone else had gone home for Christmas. I was desperate to hide from the world that I hated.
On Christmas Day while everyone else was opening presents, having dinner with friends and family and sharing love and Christmas cheer, I was sat on my own in a dark room, eating tuna straight out of the tin with a bottle of wine on the side.
I felt hopeless, desperate and alone. No one understood what I was going through, and I wasn’t sure how much longer I could go on for.
I didn’t go to or flopped each of my university exams. I barely even left the house…
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I have a lot to say, but I don’t always know how to say it.
I have a lot to say, but I don’t know if you will understand me.
I have a lot to say, but I can’t get the words out.
I want to scream, but you’ll say that I’m being dramatic,
that I’m having a tantrum,
that I’m not behaving like an adult.
Spend a day in my head and you’ll see what it’s like
to be a woman,
to be autistic,
to be inattentive,
to be hyperfocused,
to be misunderstood,
to be maligned.
I have a lot to say, but I don’t always know how to say it.
Fantastic first effort from a viewer of my most recent live stream collaboration with The Autistic Advocate. This is definitely a subject I will explore in due course. 🌸
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.
Brilliant explanation as to why we’re not “all on the autism spectrum”. 🌸
I just read a post under the irritating title of “Why we’re all on the Autism Spectrum.” I went in expecting something a lot worse than what I found: I thought I was going to encounter someone trying to claim we’re all actually on the autism spectrum to some extent. The post came close to such a claim, but just managed to swerve away from such an extreme view, by rewriting the spectrum to apply to all of humanity – that all people are on a spectrum just like other spectrums (their example being sexuality). In making the claim in this manner, the poster makes a break from the actual meaning of the autism spectrum, allowing her to then make the otherwise factually incorrect claim that we’re all really on the spectrum. But that subtle shift, and the title of the post, are still going to mislead and…
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It’s kind of like that saying, “you can’t un-ring a bell.”
Once you know you’re autistic, it’s nigh on impossible to go back to what your life was like before having that knowledge.
That is why it’s so easy for us to be gaslighted (gaslit? I’m still not sure what the right tense is…) by others when we have a difficult time with something that we seemingly had no difficulty with before.
I enjoy concerts of bands/musicians that I love. It’s a full sensory experience which makes me happy. However, more often than not, it’s the before and after that causes me the most trouble in terms of a sensory hangover the next day… and no, I hadn’t had a single alcoholic drink the night before.
Two days ago, my husband and I attended a concert in Birmingham for Manic Street Preachers – a band he has loved since adolescence and one I’ve come to love over the last eight or so years. Living in the reasonably small “city” of Gloucester (and I put city in quotes because it would be considered a large suburb in American terms), there can be sensory overwhelm when in the centre during peak times (e.g. festivals or just especially nice weather), but Birmingham is a much larger city with far more of a metropolitan feel. Stepping out of New Street Station (or, as it’s now known, Grand Central), the sensory overload was immediate:
Sounds: traffic, tram, people, construction, some unidentified high-pitched industrial noise that makes me need to cover my ears.
Smells: vehicle exhaust, cigarette smoke, rubbish bins, gutters.
Sights: cyclists, pedestrians, cars, electronic billboards, tall buildings, trying to figure out which way to go since everything has changed since we were last here.
Fast-forward to when we arrived to the concert venue. Thankfully, once we got on the right track, it was a straightforward walk without much to write home about. The doors had been open about ten minutes when we arrived and there weren’t massive queues, so we got through security without incident. We had a slice of pizza each before finding our seats and enjoying the opening set by The Coral.
By the time the Manics hit the stage, it was apparent they were in top form for the evening. Their set was energy-filled and fantastic. My only critique of the evening – which husband politely disagrees with – is that the lighting engineer was a bit liberal with his use of the strobe lights.
Now, one may read that sentence and think, “Really?! That’s all you can complain about?”
But hear me out.
When you’re emotionally and/or cognitively depleted, or “running low on spoons” as I like to call it (not sure what The Spoon Theory is? Check out my video about it here), your tolerance for certain sensory stimuli diminishes significantly. In my case on Friday, it was for painfully bright strobe lights.
I wear earplugs to concerts anyway to protect my hearing, so that was being managed as usual. I had my sunglasses on my head acting as a headband to keep my hair off my face, but I was thankful they were to hand so I could put them on and continue watching the show, rather than have to sit with my eyes shut and face turned away because the light was causing me pain. The strobe light was only really used during particularly fast-tempo songs, so there were some extended breaks where they weren’t used at all.
It’s funny because thinking back to when I was younger, I can’t necessarily remember being especially bothered by strobe lights… I mean, I would never say that I loved them, but I can’t recall feeling actual pain in my eyes from the brightness before.
Perhaps it’s a combination of factors (list not exhaustive):
- Resilience of youthfulness
- Blissful ignorance of my autism in my early years
- A higher tolerance of sensory stimuli whilst still having sensitivities
- Decreased ability to cope in adulthood due to stress and exhaustion
After the concert, we had a brisk walk back to catch the train. Anticipating the chaos of leaving the venue led me to keep my earplugs in, a decision I was glad I took. Not only were people staggering around and bumping into each other upon exiting the building, but there were men shouting, selling fake tour tees on the sidewalk (sorry, pavement!) and blocking everyone’s path, which was making me even more anxious. Once we got clear of that and on the main lit path back to the station, I was feeling a bit calmer, but I didn’t actually remove my earplugs until we were nearly at the platform for our train… I just needed that sonic isolation to keep myself in one piece.
The train did not have many carriages and there were many people crammed onto it, with several people standing as there were no seats left… including a group of lads whom I can only describe as football hooligans who started chanting a Wolverhampton song quite obnoxiously. Thankfully we were only on for three stops, as we had driven up to Droitwich and caught the train from there; otherwise, it would have been a very long and insufferable journey home.
I woke up about four hours after going to sleep with a stonking tension headache, which I knew absolutely was a result of all the sensory assault I endured over the course of the evening, and I hated myself for it. I lay in bed for about ten minutes before prising myself up to get a migraine tablet just feeling absolutely loathsome towards myself… why is it that I just can’t do “normal” stuff without having some sort of reaction, either getting angry or upset or waking up with a migraine? Why do even the smallest perceived things seem to be so bloody hard sometimes?
The best I can do is just try to budget myself in relation to my senses a bit better… and anticipate when the overload is going to happen. Maybe I do need to keep my ear defenders in my bag, as they’re a bit easier to grab and put on than my earplugs in a pinch, and I just need to not be self-conscious about them… with any luck, people will just think they’re wireless headphones rather than ear defenders anyway. 😉
There are some days that I just want to give up. Never leave the house again. Just become a recluse and say, “fuck everything.” But then I think, “what good has that done anyone?” and then I get up and I try again. And I fall down again. And I pick myself up, try to figure out what went wrong, and try again. Lather, rinse, repeat… the perpetual cycle of being an autistic woman.