My Love/Hate Relationship with Concerts: Stimming Joy & Sensory Overload

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.

Losing A Parent Through Isolation, Not Death

Here’s the true story of how I started losing my mother, Ann, in late 2005/early 2006 and completely lost her in mid-2008, just as I was leaving the US to move to England. (Names and place names have been changed.)

I did not speak to my Dad for the majority of my junior year of undergrad (Aug 2004 – May 2005), as this was when the divorce was wrapping up (either the 11th or 13th December 2004 – it was close to Ann’s birthday – “the best 50th birthday present ever” in her words) and my Dad’s and my relationship hit a bit of a rocky patch and it was easier for me to just not speak to him so I could concentrate on myself at university.  Talking about it with him years later, he was devastated by this, but we have both agreed and reconciled that it needed to be that way at that time; thankfully, our relationship has remained strong ever since and it continues to strengthen.  I’m proud to call him my Dad.  He sacrificed a lot to make sure that my brother and I were never without; I don’t know if I’ll ever truly be able to express to him how grateful I am for all that he has done my whole life.

By the summer, I needed help with my computer, so I “extended the olive branch” and arranged to meet up with him after I was settled in my dorm room for the summer on campus for my summer job.  He came to work on my computer and we ended up having a long heart-to-heart, all-cards-on-the-table conversation.  I confronted him with several questions that had been bothering me for the last several years, which he openly answered.  After a quite difficult discussion, I felt like things had been sorted, but (understandably) I was going to approach things with caution because I didn’t want it all to blow up in my face again.  As such, I did not tell Ann straight away that he and I had reconciled because (knowing what she’s like) if it all blew up again and we fell out, she’d just go “well I could have told you that was going to happen”… she was very good at that.  So when I eventually told her that Dad and I were on good terms again (including that when I finished undergrad I was going to move in with him and Rita in the summer to commute to Uni for grad school), and needless to say, she did not take it very well.  Even though I explained that commuting from Suburbia (7.3 miles) made more sense than Smalltown (19.9 miles), especially in winter, she just saw that I had “switched alliance”, even though a child should never have to pick sides between their parents, no matter their age.

Over the two years of grad school, I barely saw or heard from Ann.  In my first year, I was living with Dad & Rita, interning in the city, and spent a lot of my time on campus or at a friend’s place writing papers late into the night.  By my second year, my course load was lightened a bit (thanks to doing two summer courses), I had moved to Littletown (less than a mile from where she worked at a supermarket) with a friend from the graduate programme and was interning at two schools in Biglittletown (i.e. much closer to Smalltown than Suburbia or the city).  Ann never once came to see my apartment, and when I showed up at the house in Smalltown one day when I finished my internship early, I was given the cold shoulder upon arrival, being told, “you know I don’t like cold-callers”… not realising that I had to make an appointment to visit the house I grew up in!!  She was pushing me away with both hands, despite me trying to maintain a link.

Ann has also succeeded at turning my only sibling, my brother Danny, against me as well.  Rita’s youngest daughter had messaged Danny on Facebook, which led to Danny blocking me on Facebook, because Ann convinced him that I was behind it all.  I realised that he blocked me and spotted him in the Student Union at my university (where I was finishing grad school and he was a freshman) – which wasn’t difficult as he’s over 6’5” with bright red hair – and he was not interested in hearing my side of the story… he said he’d unblock me but to this day, he still hasn’t… that was roughly April 2008.  So I ended up losing my only biological sibling before I lost Ann because of the poisoned thinking she had instilled in him.  Growing up, my Dad always reiterated to us both that we have to be each other’s best friends, as one day we may only have each other.  Funny, but Ann never echoed that sentiment.

I had to corner her at the supermarket one day to get her to sign a document for my UK passport – which was a declaration stating that both she and my Dad were legally married at the time of my conception and birth – but knowing what she’s like, I had to say it was for a work permit identity document rather than my passport, because if she knew it was for my passport, she would have refused to sign it – and I had far too much riding on it for her to mess it up for me at that point.  She would have flipped out also over the fact that my Dad informed me of his previous marriage – a detail which she forbade my brother and I ever being told – because I would have found out anyway when applying for my UK passport (needed to provide the Divorce Decree from his first marriage and the Marriage Certificate from his marriage to my mother).

The last conversation I ever had with Ann was on Sunday the 13th of July 2008.  I can’t remember the entire conversation, but the one aspect that rings in my head is her final statement to me: “have a nice life.”  No goodbye, no “I love you”, nothing.  Just “have a nice life.”  Talk about gut-wrenching and devastating to hear from your own mother – the woman who carried you and brought you into this world… who kissed and hugged you when you were crying inconsolably or painfully ill.  I was 23 when Ann disowned me, but today at 31 I’m still bearing the emotional scars.

I planned our wedding without my mother.  I didn’t get to go try on wedding dresses with her, or pick out a cake or anything with her, like most girls do when they’re about to get married.  I couldn’t invite her because I knew she would not have made the effort to travel to the UK, plus it would have been too difficult for my Dad (he’s been emotionally damaged by her too).  I’m eventually going to go through my first pregnancy without her to ring and complain about morning sickness or ask what her experiences were with me and my brother.  I will have to explain to our hypothetical children that they have a grandmother who lives in America, but that she doesn’t talk to their mummy so they won’t ever know her.  How is that going to make sense to them?  Will they fear that when they reach 23 years old that I’m going to stop talking to them too, like some sort of sick family tradition??

I had thought that she would have broken her silence towards me when my Grandpa was ill in hospital and ultimately passed away… nope, I had to find out through an email from my Auntie Pam (married into the family so no actual blood relation to me) that Grandpa was in hospital, and through a Facebook message from my aunt Theresa (Ann’s younger sister) that Grandpa had passed away in the night.  I cried for days and still cry when I think about him.  I couldn’t afford to fly back for his funeral, and even if I could, I doubt I would have been welcome thanks to Ann.  Earlier this year when my Grandma passed away, again I found out through another family member (my cousin Jean, Theresa’s eldest and closest in age to me) and not from Ann.  That pain from both of their passings cut me deeper than I could have imagined and reopened the old wound from 2008 that I thought had healed over.  THAT PAIN NEVER GOES AWAY.

When one actively chooses to write off one of their own children, it’s not over when you exchange those final words.  It’s like throwing a stone into a still pond; the ripples keep going on for ages before the water stills itself again… which will be after the culprit’s demise, no doubt.  This is worse than mourning a death, because you know that person is still alive and going on with their daily life, and you can’t help but wonder if you ever cross their mind like they cross yours every day.

I mourn the loss of the person that I thought my mother was.