My Sensory Hangover

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.

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Why Temple Grandin bums me out

Wow… the title of this blog certainly caught my attention, but what the author has to say is definitely worth a read. 🌸

Native of Nowhere

IMG_1157 At least I got a good seat

A week or two ago I went to Knoxville for a free opportunity to see the Grand Grandin Vizier of American autism. (Played by Clare Danes, of course. It seems obligatory to mention the award-winning TV movie about her). I had seen her lectures on YouTube and read her many contributions in books about Asperger’s and girls OR Asperger’s and employment. We have the same ideas about the types of jobs that would be nice for us to have if there were more of them.

I was so excited to get out of town for a day and find out what new things she had to tell us about ourselves. The place was packed. The overflow was 500 strong, but because I was there early I got to see her in the flesh.

By the end of the Q&A, I was livid. It…

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Dear Neurotypical friends…

Beautifully articulated… another amazing piece by The Silent Wave Blog. 🌸

the silent wave

I may have a social disability. I may say or do things that seem strange to you or put you off or leave you wondering.

This could–and sometimes does–lead to misunderstandings and unnecessary hurt feelings, on either side–or both sides.

I wantto be your friend. It’s just that aspects of life that the general population may take for granted as natural and intuitive are, for me, anything but. Aspects like communication (whether verbal or by way of facial expressions and/or body language), socialization, etiquette, and so on and on and on.

It’s not you; it’s me. Well, actually, it’s our intersection. It’s not a character flaw, just a neurodevelopmental variant. It happens, and it’s OK.

I’ll explain. In fact, I’ll provide you with a mini-handbook, a roadmap to the inside of the social areas of my brain.

I’m just not into gossip. I’m not into hearing about people I…

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Autism expert

Beautifully articulated and rationally presented. I consider myself still learning in relation to being an autism expert because I am only a year post-diagnosis, but if anything, I’m honing in my articulation skills and building my knowledge base off my experience and the experiences of others. 🌸

Michelle Sutton

I saw an advertisement today that was promoting a talk by an autism expert, a man who has an autistic son. A few days ago I saw a link to the website of an autism expert who is a psychologist and researcher. Last week I saw a short video explaining autism made by an autism expert who teaches about autism at a University. The week before I saw series of infographics made by an autism expert who is an author and counsellor to autistic people.

Each time I saw these things, I wondered what it was about the people who are such experts on autism that actually made them experts. So today I’d like to discuss: who is an autism expert and why are they experts?

I’d like to start by thinking about what makes a person an expert on a subject- any subject- just generally speaking.

The definition of…

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ICYMI…

I wrote this fun piece for Spectrum Women for Autism Acceptance Month in April.  Not for the squeamish but I try to break down taboos around periods!

How I Learned to Love Having My Period as an Autistic Woman
🌸

autistic anxiety

Michelle Sutton succinctly explains how autistic anxiety is not based off irrational fears, but rather comes from perceived stressors and past experiences. 🌸

Michelle Sutton

It’s great that as a society we are becoming more aware of mental health challenges and the impact they have on peoples lives. Words like depression, and anxiety are part of our conversations now, and the stigma around them is reducing. But there is still some misunderstanding about what they actually are, and even more so when we mention anxiety in neurodivergent people. 

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Autistic Burnout & Regression

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. 🙂 🌸