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.

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. 🙂 🌸

Aspie Burnout & The Worst Migraine of My Life…

This past week was very full-on, as we spent a few days in London, which were brilliant but completely overwhelming for me.  When you look at what we did, it was a fun time away:

We arrived on Tuesday, had lunch at Zizzi’s, then found our hotel and thought about what to do in the evening.  I suggested going to see the new Harry Potter(-ish) film, Fantastic Beasts and Where to Find Them.  As to be expected in London, standard cinema tickets were extortionately expensive, so to make it worth the extra money, we went to The Lounge at the Odeon, which was just down the road and on the corner of the road where our hotel was.  The Lounge was for adults only (as in no children under 18 allowed), with dedicated bar service and food menu, as well as leather sofas which reclined and had footrests which elevated – and even a call button for service so you didn’t have to leave your seat during the film!!  The film was fantastic and the viewing experience was top notch, as there were no extraneous noises from the other cinema-goers to irritate me.  We walked back to our hotel and went to bed, ready for another full day ahead.

Wednesday morning, we went downstairs for breakfast.  This is where my first wobble happened.  Every hotel is different – some let you help yourself to a table and food, others want you to wait to be seated and verify you have pre-booked your breakfast.  No one was stood by the door when we reached the breakfast room and when I enquired to an employee if we had to check in or just help ourselves, it became apparent that English was not her first language and she walked off to get someone else without saying a word (and just looking very nervous).  Someone else came back with her and still did not seem to understand my question, so led us to a table then said, “you can help yourselves to the continental breakfast.”  Why lead us to a table when we’re not going to sit down until we have food?  Surely it made more sense to say, “yes, help yourselves and I’ll lead you to a table.” or something like that.  So that frustrated me as it was a whole back-and-forth exchange that didn’t need to be so complicated.  The breakfast offering wasn’t that great either – the milk for the cereal was nearly room temperature (yuck!), the croissants were bordering on stale, the apple I had was mushy and gross, and nothing else on offer appealed to me.  We went back up to the room to prepare to set off for Watford Junction to get to the Harry Potter Studio Tour.

We knew that we had one change on our travels at Euston Station, but what we did not anticipate was the sheer volume of people trying to make it up the escalators – it was like herding cattle, so crowded and disorienting.  When we finally made it into the station to look at the train departure boards, I was overwhelmed by everything around me and only paid attention to seeing “WATFORD JUNCTION” on the departure boards – not thinking twice about it being London Overground (which is what we got) vs London Midland (which is what we wanted).  I thought that it shouldn’t be too much of an issue, or we could go change platforms, but Paul said that it would cost us to swipe our Oyster cards back out again, even though we haven’t gone anywhere, so we stayed and took the London Overground, which took nearly 45 minutes to get to Watford Junction, as it stopped at every. single. stop. along. the. way.  [The London Midland service would have gotten us there in 20 minutes.]  Thankfully, when we eventually arrived, the designated coach that runs directly between Watford Junction and the Studio Tour was still waiting by the kerb, so we dashed for it and got on board before it set off.

Queueing for entry to the Studio Tour wasn’t too terrible, though it was surprisingly crowded for a Wednesday morning (during term-time as well).  Seeing everything on the tour was hampered by the other tourists/visitors getting in my way when I was trying to see something or snap a picture – I realise this sounds childish, but I would stand aside to let people take their photo before trying to take mine, but I kept being cut off and blocked and at times I genuinely wondered if I was invisible. 😦  We did enjoy going around and seeing all the authentic objects/props/sets from the films… it truly was magical.  Lunch was expensive (as one would expect from a prime London tourist spot) and the Butterbeer was weird (Paul thought it tasted like butterscotch and Irn-Bru, and I thought the frothy foam top was a bit too sweet for my liking), but I’m glad we tried it.  We showed great restraint in the gift shop at the end, only purchasing a Hogwarts crest fridge magnet and picking up our Collector’s Guide (which was purchased as part of our ticket package).

The London Midland service back to Euston was a lot quicker.  We got back in plenty of time to grab a quick bite near the hotel, drop our Harry Potter stuff off and minimise our carried possessions to head off to the concert in Islington.  When we changed from the Central to Victoria lines, the Tube was quite full and busy, but I just counted the number of stops until we made it to Highbury & Islington.  When we arrived at the platform, the place was absolutely packed – unbeknownst to us, there was a home game for Arsenal and loads of punters were using the Underground to get to the match.  It took several minutes to get through the throng of people – Paul stayed behind me with his hands on my hips, which made me feel safe and secure – and when we made it to the ground level near the exit, I needed to stand off to the side to catch my breath and de-stress a bit.  I had never been in such a crowded situation like that where it was so closed-in (the last time we were in a similar situation was when we saw the Manic Street Preachers at Cardiff Castle and were trying to exit with the thousands of attendees through one of the two castle entryways, but at least it was out in the open).

The concert hall was easy to find and we were up in the balcony quite quick to secure good seats in the first row; Paul was very happy with our positioning in line with one of the speaker stacks.  The comedian who was emceeing was a bit obnoxious (I didn’t laugh at any of his material), the supporting act Haiku Salut was a bit too avant-garde for my liking (though I didn’t exactly dislike their set either), comedian Ed Byrne was hilarious, and PSB’s set was brilliant.  The one-off show was in benefit of Bowel Cancer UK and over £12,000 was raised.

The Tube was a fair bit quieter heading back to the hotel afterwards, as the football finished before the concert did.

Thursday morning breakfast was a bit of a palaver too, but this time it was just too crowded and too noisy for me – the ceilings were quite low, there were a lot of people, the tables were all quite close together, and all I could hear was silverware banging and clanging on plates and bowls – it was enough to drive me mad.  We quickly ate and went back up to the room and had a little lie-down with the curtains drawn and one of the dim sidelights on.  Paul gave me a cuddle and I got a bit weepy, but then I got cross with myself for getting weepy over something so trivial, but I was genuinely feeling so overwhelmed by all the extraneous sensory input over the last few days.  After about 20 minutes (and an episode of BoJack Horseman on Netflix), I felt ready to pack up and check out of the hotel.

Sitting in the Victoria Coach Station departure lounge was the most irritating experience, to say the least.  Every few seconds, the three-toned chime for an upcoming announcement would sound, followed by someone blowing into a microphone and saying “one two one two, testing”, followed again by the three-toned chime.  Repeat that at least 25-30 times over the course of an hour.  After about 5 minutes, I had to put earplugs in, but that didn’t help silence it completely, and I didn’t have my headphones or iPod to listen to music to drown it out, but it was slowly driving me mad.  Ten minutes prior to boarding our coach, Paul asked for the ticket, which I handed him.  He said, “the date is wrong.”  He had asked me to change our departure time a few days before from 16:30 to 12:30, but National Express’s website clearly did not keep my selection of Thursday 24th as it changed to Tuesday 22nd – effectively, turning around 40 minutes after arriving in London to return home!!  I naturally started to panic, but Paul said to keep cool.  He handed the coach driver the paper with his thumb over the date – everything else from the departure time to the coach number matched – and the driver accepted it and welcomed us onto the coach!!  I couldn’t believe it – thankfully the coach was less than half full, so it’s not like we were taking seats away from other travellers, but I was so grateful to not have to shell out extra money I didn’t have to amend it a second time.  I am grateful for positive outcomes like this!! 🙂

Thursday evening when we got home, I was zonked.  There was no way I had the energy to go to my usual choir session, so I instead went to dinner with Paul, his mother, and his uncle & aunt who were visiting from London.  Not quite a traditional Thanksgiving dinner (which I no longer observe), but a nice meal out nonetheless. 🙂

Friday was a busy day at work catching up on all the things that had accumulated in my inbox while I was away, along with picking up a quite serious safeguarding concern with a senior officer.  I was only too glad to be able to pack up at the end of the day and head home.  That evening was a Big Sing event with my choir where about 250 participants from across the 5 choirs our leader oversees met in one large room in a small assembly hall complex.  Whilst the sound we made was amazing, the PA had to be a bit louder than usual and the chatter of everyone around prior to starting was a bit much, so I put my earplugs in until my usual companions from my choir arrived and sat near me.  I also got to disclose my Autism diagnosis to two of my three usual companions, as an opportunity has not easily presented itself since we started up again in September and I wasn’t quite sure how to share it.  [Coincidentally, I saw this blog, Coming Out Autistic, posted today by Anonymously Autistic which I will also separately address in another post soon.]  I got home much later than expected because the northbound motorway was shut and taking the parallel-running A-road took about 20 minutes longer, thanks to the increased lorry traffic.  I went to bed and fell asleep pretty much straight away.

That brings us to Saturday morning.  Just gone 6:00, I woke up needing the loo and had an absolutely pounding headache – most certainly a migraine.  Did my business and went back into the bedroom, took an Imigran and climbed back into bed to go back to sleep.  Woke up again just gone 9:30, no effect from the Imigran, this time feeling quite nauseated.  Rolled over in bed, nausea got worse – a mad dash to the bathroom to be sick.  I have never had this effect from a migraine before.  Got back into bed and about half an hour or so later, tried rolling over again more gently this time – same again.  Then got myself into a more comfortable stable position where I would try not to move and slept from about 10:10 to 13:40, when Paul came in to see if I wanted lunch and if I was still alive.  My head was still killing me, but I wasn’t hungry.  He offered to bring me a few Pringles to nibble on, which I gratefully accepted, along with my prescription sunglasses (as it was too bright for me to just wear my regular ones without excruciating sensitivity).  After about 10-15 minutes, I thought I’d try going downstairs for a bit, hoping that being vertical and out of the bedroom might help, but I only lasted about 20 minutes before I had to retreat back to bed for another two and a half hours.  By 16:40 when I woke up again, I could not detect a residual headache.  I slowly sat up, fully expecting to be hit with it again, but I wasn’t.  I went downstairs with my regular glasses on and felt – dare I say it – fine.  We managed to keep our plans for the evening with some friends (as I had to postpone my plans with my cousin during the day for obvious reasons) which I was fully expecting to have had to cancel.  After having a bit to eat and a shower, I felt like my usual self again and couldn’t believe I had been laid out by that migraine for so much of the day.

On reflection, I think this was a classic case of Aspie Burnout.  I have seen this a couple of times floating around on the internet, but this best explains the migraine from hell.  I have never had one make me physically ill before – and I hope to never have one like that again – but it clearly was my body & mind’s way of saying, “STOP. Just stop what you’re doing and rest.”  I cannot remember the last time I slept that long, but I clearly needed it; I was even able to fall asleep without issue after we got home from our friends’ house on Saturday night.

As a bit of supplemental reading, please check out this post from Planet Autism BlogAspie Burnout, which also references The Spoon Theory, another good way to look at what I experienced.  I hope by sharing my experiences, others will be able to read them and say, “Yeah! I had that too!” 🌸

‘How can you not hear that??’ communicating sensory difficulties

I have always had sensory sensitivities but never knew that was what they were called; I always felt like others thought I was just being dramatic, so I rarely said anything. It’s nice, in a way, to have these sensory differences acknowledged. 🌸

YennPurkis

I’m not sure if this is the case for anyone else but the older I get, the worse my sensory sensitivities are. I used to be able to eat almost anything and it all tasted good and had a texture which didn’t revolt me. Now I am anxious about going to restaurants in case they have nothing I can happily eat.  I eat exactly the same dish every night unless I get take away, in which case I usually order the same dish! (Except for pizza. I think it’s pretty hard to make pizza horrible). To the horror of my vegetarian, vegan and health conscious friends, the things I am able to eat mostly come from the meat group or the sugar group! I am only 42 so worry that if I get old I might only have one thing I can eat!

I also have an increasingly heightened sense…

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Migraines.

I’m fed up of getting migraines.

First, I’ll apologise that it’s been quite quiet on Facebook, Twitter and here.  In the lead up to Paul and I going away for a four-night break, trying to get life sorted was proving to take a bit more energy than usual.  I don’t like sharing articles on Facebook unless I’ve actually gotten to read it first (and make sure it’s not just click bait) and I’ve just not had the mental energy to process whatever I’d be reading.

Since we came back from our little holiday, not only am I contending with my period kicking in a couple of days late (no scares, though – no little cherry blossom buds anytime soon! 😉), but it seems like my migraines are starting to become a bit more frequent again, which troubles me.

I’m not stupid enough to Google every time I have a headache because WebMD has predicted my demise no fewer than a dozen times.  However, I heard on the radio the other evening of a woman was left with severe brain damage after medics at the hospital did not correctly diagnose her severe headaches as being the result of a devastating brain infection; this happened in 2009, but it was in local news because a financial settlement was reached due to the negligence in her case.  Things like this terrify me.  It’s not like I’m a hypochondriac or anything, but I can’t help but think whenever I get one of these migraines seemingly out of nowhere – “is this how I die?”

I’m grateful that I am able to get Imigran (sumatriptan) through my NHS prescriptions, as it is quite expensive to buy over the counter (or from behind the counter, as a pharmacist would have to agree to sell it – it’s not like ibuprofen!).  However, I’m becoming concerned with how many I’m having to take in order to kick a migraine fully.

When I started taking Imigran (after codeine and some other anti-inflammatory didn’t work), one 50mg tablet got rid of it within an hour.  Brilliant!  To get my life back within an hour when before I could be laid out in bed for a day and a half was amazing.  As time went on though, one 50mg tablet would get rid of it within an hour… but it would sneak back after about 24 hours.  Another tablet and then it would seem to “take the hint” and would jog on.  Then it was one 50mg tablet… then another 24 hours later… then another 24 hours later.  So I read up if it was safe to take more than one (which it was, for me).  So when a migraine kicked in, I’d take two 50mg tablets… within the hour, it was gone and wouldn’t come back! Brilliant!  So a couple of months ago, after tracking this for a few months, I asked my GP if my dosage could be increased to 100mg.  She was reluctant to do this but instead increased the number of tablets I would get whenever I received my prescriptions (up from 12 to 18).

Fast forward to Sunday just gone.  Period kicked in three days late and with a vengeance.  Dull all-over headache, not sure if it was a migraine as I wasn’t too sensitive to movement or smells, though a bit sensitive to bright light.  Took 2 ibuprofen, but this did nothing whatsoever.  Tried going to bed at just gone 10pm… couldn’t fall asleep.  Took one 50mg tablet and went back to bed… must have worked a treat because I next woke up when I was supposed to, though after I got out of the shower and got dressed for work, the “fuzziness” was coming back, so I took one more 50mg tablet and went to work.  By the time I made it to the office, all was good in the world again (as good as it could be for a Monday morning), so I cracked on with my first day back from leave – 128 emails to sort through? Okaaaay…

By the time I headed home, the heavy headed fuzziness was coming back again.  I persevered for the rest of the evening, hoping it was just the stress of the first day back causing it and that having a quiet evening in would help, but it wasn’t relenting at all.  Again, it wasn’t restricting me from doing anything, it was just making me feel really tired and not keen to do anything.  At bedtime, I took two and hoped that this would sort it out once and for all.

Tuesday morning, I woke up feeling great again.  Business as usual, no big deal.  Just after lunchtime, someone came to work in the touchpoint room where my desk now lives (see Reasonable Adjustments) who STANK of cigarettes.  The room was quite warm too, which was making it worse.  My throat was becoming more hoarse as the afternoon went on and it was becoming intolerable (not sure if I’ve ever mentioned before, but I am asthmatic too); the headache was also creeping back.  I ended up leaving a bit early because I just needed to get out of this man’s proximity.  I went to join the motorway and saw standstill traffic (most likely a collision), so had to quickly loop round the junction’s roundabout and re-route myself.  I had brought my gym stuff with me to go have a little workout before Pilates last night, but with the rural re-route adding nearly 20 minutes to my drive, I was feeling so drained.  I had to pick Paul up on my way home too and he could see from my face that I was just in need of going home and staying there, so we didn’t go work out and we didn’t go to Pilates either, which really bummed me out.  The headache lingered all evening and would not bugger off.  Determined to not take another Imigran, I took 4 ibuprofen instead a couple of hours before going to bed, and by the time we got upstairs to go to bed and it hadn’t kicked in, I knew that I was likely going to need to take more in the morning.  To help me sleep in the meantime, as I feel a cold creeping in, I took a dose of NightNurse and had a quite peaceful night’s sleep (though some baked-out dreams!).

That brings us to this morning.  The headache was still there.  It’s not typical (at least not for me) to keep coming back like this.  Again, I took two 50mg tablets before going to work, and so far, so good (thankfully Mr Smoker has not set up shop in the touchpoint again today!).  I’m really worried though that if I wake up with the headache again tomorrow, should I be ringing the GP?  NHS 111 helpline?

I hope that it has just been a bad combination of overlapping triggers – hormones, stress, environmental aggravation – and is not foreboding to something more sinister.

I’ve not looked into the incidence of migraines among Aspies and wonder if any research has been done on the subject… another search for another day, methinks.

Please comment below if you suffer from migraines and if there are any particular remedies which work for you, or if you have any insight into what I’ve described in this long rambling post! 😊 🌸

One Hurdle Overcome… One More Left?

Okay so I know I’ve been off the radar again for a little while, so thank you to those of you still hanging in here with me.

Since I last posted about the Autism Shows I attended, I’ve kinda gone into self-preservation mode… working in Special Educational Needs, the end of an academic year is always a trying and manic period of time with schools and parents rushing to get things sorted out for September and us caseworkers get caught in the crossfire.  Whilst I was exceptionally pleased to have had places in special schools obtained for not one but two of my cases (when it was looking unlikely due to lack of spaces), I was finding that my sensory differences were getting the better of me in the office the more stressed and anxious I was feeling.  I have been effectively wearing my sunglasses almost nonstop whilst in the office (only lifting them to the top of my head to speak to a colleague so I could focus better) as well as my iPod (because the noise created in an open-plan office is enough to drive me batty).

I emailed the Autism Assessment Team again on the 5th of July about what kind of time frame I was facing in relation to the Occupational Therapist referral, as I was starting to feel even more acutely anxious about everything.  I reiterated my sensory issues in the office and also wrote the following:

I am so sorely disappointed with everything to do with this diagnostic journey and I had certainly hoped that this would have been resolved already. I simply do not have the financial ability to pay for a private assessment and feel like I’m being treated as a hysterical woman that should not be reacting to things the way I am…  I feel like I’m being punished because I have learned and adapted ‘so well’ over my life thus far because I had no choice but to do so; just because someone has learned to cope does not mean that they don’t experience difficulties at all.

I reiterate again that “the woman in the questionnaire” was the honest and true me… I am experiencing such levels of traumatic despair at the fact that I am not being believed and I do not feel like this is being taken into consideration. I don’t want to go to my GP, break down and get signed off work because all of this being too much for me to deal with, but I almost feel like I have no choice but to do this, even though it won’t make things any better on the work front because the work will still be there, along with everything else!!

I need to know:
a) that the referral to the Occupational Therapist has been made
b) that the appointment will allow full exploration of my sensory differences and strategies to mitigate the stress and anxiety that they cause me
c) what the time frame is for me to be seen because this particular unknown is unbearable

Speaking to my dad about this all, he believes me and agrees that I may very well be autistic and he was astonished that no one from the service contacted him to discuss his questionnaire. I was given the impression that there was nothing of significance in his questionnaire to highlight things that may point to a positive diagnosis; he explained to me that he spent a lot of time on his questionnaire and had fully expected someone to contact him in some way to discuss things further. As such, he will be attending the appointment on the 11th with me and my husband Paul.

Having been to the Autism Shows both in London and Birmingham a few weeks ago has further validated me and given me more fire to pursue this diagnosis. It is very apparent that the further away one lives from London, the harder it is for females to be diagnosed as autistic. If anything, it’s a shame that I attended my appointments prior to attending the Autism Show, because I have come away armed with far more information than I had previously and several well-respected professionals in the field agree that the diagnostic criteria used is based on the young male presentation of Autism and does not take gender variations into consideration, least of all the cultural differences with me being born and raised in America (because I speak perfectly understandable English, I think this element was not taken into consideration at all, as per my letter of the 13th of June).

My mental health should not be suffering as much as it is because of all of this.

Thankfully, I received a response from the OT (I’ll call her Emily) the next day (as I had sent my email outside of office hours).  She said that she was fully booked until late September/early October, but asked if I would be happy to take up any cancellation appointments should they become available.  She also briefly explained what the appointments would entail and that a written report would be provided afterwards.

I wrote back saying that I would be glad to take any cancellation appointments, but that just knowing that it would be late summer/early autumn was extremely helpful; it allowed me to “park” my anxiety so to speak, as there was no point in me staying angsty about it.

Fast forward to Monday the 25th July.  I received an email from Emily saying that a cancellation had come up on Wednesday the 27th July in the afternoon.  I responded straight away saying that I would accept the appointment.

Going back to the same clinic building where I had left so upset and (without wanting to sound too dramatic) a bit traumatised, my anxiety was rapidly climbing upwards, despite me actually feeling relieved that I was finally on my way with the OT component of my diagnostic journey.  I explained this when we got into the room and Emily suggested I try a few assistive items, including rolling balls with rounded-tip spikes on my thighs (where deep pressure receptors are high in concentration – it felt nice on my thighs but not on my hands), weighted lap pads (2kg each – which didn’t do much) and a weighted blanket (7kg – I really liked this one, despite the warm weather on the day).  Emily advised that I only keep the weighted blanket on for about 15-20 minutes and that the effects should last for about an hour or two.  We spoke for a bit, me answering open-ended questions about my sensory sensitivities and sensory-seeking tactics, and after what only seemed like a few minutes, Emily suggested that I take the blanket off… I was absolutely amazed at how calm I felt because it happened completely subconsciously.  When we finished the open-ended questions, we went on to the Adult Sensory Profile questionnaire (Based on the intersection of two continua [neurological threshold and behavioral response/self-regulation], this model describes quadrants identified as Low Registration, Sensation Seeking, Sensory Sensitivity, and Sensation Avoiding), ranking my sensory experiences from 5% or less of the time, 25% of the time, 50% of the time, 75% of the time, or 95% or more of the time (there were word associations with each ranking that I can’t remember but the numbers helped me personally be able to rank myself with each question).  When we were done with the questionnaire, we scheduled a follow-up appointment the next week to discuss the outcome of the questionnaire, how sensory processing works and strategies to help me moderate my sensory differences (because there’s no “cure” for it, just management, which I understood).

Fast forward again to Thursday the 4th August – my second appointment.  I was given the validation that I do experience some sensory differences which are made more apparent/acute depending on my mood (i.e. the more stressed I am, the more sensory sensitive/sensation avoidant I become), which made sense.  We talked through the report and strategies and how the body processes sensory information and where we ideally would like to be in a middle ground between agitated (extreme high end) and lethargic (extreme low end).  Emily also provided me with a list of suggestions for the workplace, because it was clearly identified that I was able to cope in office spaces before but that this particular office space (since we moved to it in October 2015) has been progressively having an impact on my mental well-being the more my sensory differences have been agitated.  I was grateful for the list of strategies/suggestions given and looked forward to discussing them with my manager the next day [side note: chatting about it with my manager was so positive; I sent her an email summary of our discussion which she is going to send to HR to see what can be done to help me out – will update when things happen!].  The suggestions for modulating my sensory differences were quite extensive, many of which I do to some degree already, and I will actively try to put these strategies to use and hopefully improve things for myself.

I left still preoccupied about my third appointment with the psychiatrist next week on the 11th with my Dad & Paul… she said that the appointment should help, regardless of the outcome.  I said again how I’ve been waiting a very long time and in that time have constructed this identity around being an autistic woman, which felt shattered to pieces after the second appointment.  Emily was sort of hinting at how a label of autism could sometimes be more detrimental than helpful and that I should think if it could be anything else…

One of the questions in the first appointment was if I had experienced any abuse in my life, which I flatly replied, “no.”  When Emily asked again in the second appointment if I had experienced any sort of abuse or trauma, and I made the throwaway comment that my mother cutting me off eight years ago probably wasn’t great and that through this process I’ve begun to wonder if she too is autistic… it was then that Emily said I should think if it could be anything else.

I had a 25-minute drive home ahead of me, and when I was sat in a queue of traffic trying to make it onto a main road near a very busy roundabout, a little gremlin popped out of a dark corner of my brain… something that had come up both when I was working as a social worker and in SEN… attachment disorder can present with a lot of the same characteristics as autism.  My heart sank.  Could all of this be attachment issues??  Does my mother have attachment issues which permeated her parenting??  It became far too much to bear.  I got home and was hardly able to speak.  I handed Paul the report and the workplace suggestions and sat silently on the sofa with the TV off.  Paul read the report and thought it all looked really positive, so was naturally confused as to why I seemed so out-of-sorts.  When I briefly explained, he didn’t know what to say.  I turned to my phone and sent a message to my fellow American expat Katherine (mentioned in Birmingham Autism Show) because if anyone I knew would know anything about this, it would be her.

I have to leave it there for now… more very soon. xx

London Autism Show, Day 2

Amazing what ten hours of sleep can do to make you feel like a human again. 🙂

It was a bit difficult getting to sleep last night because it sounded like there was a helicopter hovering for aaaages… whether it had to do with my hotel being adjacent to the London City Airport or not may remain a mystery, but it felt like it was hovering in the same vicinity for a long time (i.e. not flying away anywhere else any time soon).  Being in a king sized bed by myself is a rare treat, so I used the two spare pillows as cuddle pillows – one on each side of me so if I flipped over, there was one there waiting for me.  Lush. 🙂

After a nice partial English breakfast (because I don’t think you can call it a “full English” if you don’t like beans, mushrooms, or grilled tomato!), I walked back to the ExCeL Centre rather than grabbing a bus from right outside the hotel; it was a lovely morning, crisp air without being too cold and a bit overcast enough that it wasn’t super sunny, but the sun was breaking through enough to make it just seem nice and peaceful.  There were loads of people running along the river behind the ExCeL Centre too… I don’t generally get the appeal of running, but when running along the river like that, I think I could kinda get it… still doesn’t mean I’m gonna take it up anytime soon! 😛

Arrived just in time for ‘How learning impacts life: how cognitive learning in the early years affects education, transition and adult life’… if I’m honest, I was hoping for a bit more out of this one, with such a grandiose title like that.  Granted, it was only 20 minutes long, but I didn’t learn anything new; it was basically a rehash of many of the talks I’ve heard already.

The updates and initiatives round-up was interesting because Geoffrey Maddrell (OBE, Chairman of Research Autism) because he mentioned a shift in the direction of putting more research focus on its prevalence in females — YES!! It’s finally being recognised by those who can do something about it!!

I ended up missing the Brain in Hand talk because I went back to speak to Sarah Wild, the headteacher at Limpsfield Grange.  I had given her the link to this blog yesterday (if you’re reading this now, HI! :)) and it was nice to speak to her without being stupidly emotional like I was yesterday.  Honestly, she is possibly one of the nicest people I have ever had the privilege to meet and speak to at some length (and I’m not just saying that because she may be reading this blog!) and I wish I had a teacher like her that I could have gone and spoken to when I was feeling wobbly in high school especially.  Looking back on my high school years, there wasn’t really “that one teacher” who I could go to whenever I needed it.  Oh sure, there were teachers I could talk to, but not like this… it’s difficult to articulate right now.  If anything, I think my time chatting to her over the last couple of days helped make this experience all the more worthwhile.  She validated me more in probably a half hour (collectively) than the Speech & Language Therapist and Cognitive Psychologist I saw at the ASC Diagnostic Assessment Team.  I showed her my timetable of talks and my step-by-step directions that I drew up to get me to the ExCeL Centre on my own, and she asked if I had shown these in my assessment, which I said that I had.  She asked me, “did you need this to be able to get here today? Could you have gotten here without it?” and I said quite simply, “no.”  I need this level of planning and virtual rehearsal to be able to do anything remotely like this (if anything, this was the biggest single trek I’ve done on my own) otherwise, I would never get out of my town.  I don’t understand how this wasn’t taken into account in my appointments… but then again, I showed them briefly, but the need for these tools and strategies weren’t discussed any further… because clearly, my sociability overshadows all of this. {grrrrrrrumble}

The next talk I saw was the whole reason I came to London’s Autism Show in the first place: Lana Grant, author of From Here to Maternity, talking about pregnancy and motherhood from an autistic perspective.  WOW.  Simply WOW.  I’ll rewind a bit to give context – I saw that she was down to speak on the Saturday of the Birmingham Autism Show, and when I realised that my tattoo appointment had been booked for the same day, I was gutted.  So I looked at the programme for the London show and saw that she was listed as a speaker there too, so that was how I came to pushing myself to come all the way out to London on my own and do this – the motivation to see her speak for half an hour was motivation enough (and there were several other sessions about Autism & Females so it was going to be worthwhile altogether anyway).

I’ll be perfectly honest, and in an autism context it makes perfect sense, but I am terrified about having a baby.  Petrified.  I’m of an age where many of my peers are having their first, second or sometimes even third baby, and I feel like there is something wrong with me in that, while I am aware of the instinctual part of my brain which is saying, “C’mon girl, you’re not getting any younger here…” the ‘rational’/Aspie part of my brain is saying, “Are you serious? You and Paul have a good thing here, you have your routines, you have the cat, you have a glorious bed that you LOVE sleeping in because you LOVE SLEEP… are you seriously thinking of chucking that in so that you can have a tiny screaming, crying, pooping baby to keep you from doing anything for yourself ever again??”  I love being an ‘Auntie Cherry’ in that our friends’ or my cousin’s kids look to me and Paul as Auntie and Uncle and they love it when we come around and play with them while trying to maintain some sort of ‘normal’ adult conversation with their parents.  And people have said to me more than once that I’d make a great mother because my caring motherly instinct is very apparent (which heartens me, considering that my own mother clearly is missing out on that attribute) – hell, even in the dorms at University I was called “Mama”.  But what I try to hide from people are my strong sensory aversions to babyhood: dirty nappies, spit-up, snot, general stickiness (how do kids get so damn sticky!?!)… makes me either cringe or want to hurl.  This is why I wanted to see Lana speak: to tell me how she’s done it and managed it!!

Lana talked about how it is a time of massive transition and extra challenges.  She said that she has six children and was diagnosed with Asperger’s before her sixth was born, so she was able to take more ownership over what she experienced whilst armed with her diagnosis, challenging the “machine/production line of the medical field” moving from one step to the next to the next, powerless to influence anything in relation to one’s additional needs.  When looking into information about pregnancy and motherhood for women with autism, all she could find were bogus articles about what to do and not do during pregnancy to prevent autism, hence why she wrote her book about her experience [I’m SOOO buying that for my Kindle!!].  The prevailing element she spoke of was the lack of understanding and mindfulness from medical professionals and nothing being done to mitigate her massively high levels of anxiety.

Lana also spoke about social situations imposed upon pregnant women and new mothers – antenatal classes, mother & baby groups – and how she had been incorrectly diagnosed with postnatal depression, bipolar disorder, anxiety disorder; she didn’t feel depressed, but felt that she didn’t understand the same feeling that everyone else around her seemed to feel.  This all makes perfect sense to me and mirrors my exact feelings.  She also talked about the sensory processing and the overload that various experiences can bring along with it – smells, noise, lights, tactile experiences – all of which she was spot on with my own anxiety.  The final message was: “Pregnancy and motherhood has been the hardest but the most amazing thing [she has] ever done.”  I have sort of reconciled that Paul and I will most likely try for a baby in the not too distant future, but only when I’m feeling 100% ready, and I have come to terms that if we do get pregnant, we may just have one child.  I cannot foresee being able to cope with more than that at the present time, but perhaps in time our thoughts on the subject will change.  I asked her about the Facebook support group she started and asked if someone like myself (not yet diagnosed, not yet a mother but considering it) could join, and she said “Absolutely”, so I’ve requested to join that group.  I am so glad that this session was what I was expecting and more; it completely justifies the expensive weekend I’ve just had. 🙂

Straight after that session, I went into the ‘From school humiliation to internationally acclaimed artist’ talk by Willard Wigan MBE, micro-sculptor with autism.  WOW.  His sculptures are small enough to fit in the eye of a needle – and the detail!! It’s unbelievable.  Check out his website (link above) to see some of his works.  Unfortunately, I had such a tight timetable that when I did have free time to look at the few samples of his work available, they were either occupied by other people (yesterday) or they were gone (today)!! I will have to make it a point to see them in Birmingham.  The images he used in his presentation were incredible, but I do feel like it’s a case of “you need to see it with your own eyes to believe it”!!  His talk was brilliant and funny; it really is amazing how he has turned around being told that he was stupid by his teachers to being commissioned by the Queen herself to make a replica of the Crown Jewels which fits on the head of a pin.  Simply staggering.

The next session – the top ten autism research questions – was interesting enough, but I was disappointed that autism & females did not appear within this top ten.  However, Autistica did appear to go through a lot to get the views of adults with autism, their families and clinicians to narrow it down.

Because I know you’re interested, the top ten questions are:
10. How should service delivery for autistic people be improved and adapted in order to meet their needs?
9. How can sensory processing in autism be better understood?
8. How can we encourage employers to apply person-centred interventions and support to help autistic people maximise their potential and performance in the workplace?
7. How can autism diagnostic criteria be made more relevant for the adult population?  And how do we ensure that autistic adults are appropriately diagnosed?
6. How can parents and family members be supported/educated to care for and better understand an autistic relative?
5. Which environments/supports are most appropriate in terms of achieving the best education/life/social skills outcomes in autistic people?
4. Which interventions reduce anxiety in autistic people?
3. What are the most effective ways to support/provide social care for autistic adults?
2. Which interventions are effective in the development of communication/language skills in autism?

and the number one question is….

1. Which interventions improve mental health or reduce mental health problems in autistic people?  How should mental health interventions be adapted for the needs of autistic people?

It will be interesting to see how these questions come to be answered in due course.

The next session was about managing Pathological Demand Avoidance (PDA) in the workplace; I’ll be honest, I think I was reaching a point of information saturation because I spent most of the session colouring in a cloth bag from Helsey Group [there is an image of a blank canvas on an easel with a girl stood to the left and a boy stood to the right; the bag had a small set of markers in it so one could draw what they wanted on the canvas]… I used the markers to make a pretty rainbow and a rainbow-coloured heart.  I also coloured in the boy and the girl to resemble Paul and I. #Don’tJudgeMe. 😛  It was interesting to see what strengths PDA can provide: people skills (at least on a superficial level); taking leadership (often from a desire to be “in control”); adaptability (either to a situation or ‘playing’ a certain role); and team management (how to best use people’s skills effectively).

After that was a brief session by the Director of External Affairs and Social Change at the National Autistic Society, talking primarily about the reach of the Too Much Information campaign run in April [which I blogged about in Join the Thunderclap].  The NAS are going quite good work at spreading awareness and acceptance of autism in society – not just tolerance of it.

I will interject here with a side anecdote: The worst thing about these final two sessions was that a guy ended up sitting on a bench near me and he STUNK MASSIVELY of B.O.  Talk about an assault on my olfactory system – he was quite fidgety and EVERY TIME HE MOVED, I got another waft of his stank [not a typo].  I tried breathing through my mouth, but that didn’t feel natural, so I started chewing gum, hoping that the strong minty flavour would overpower my sense of smell.  I was quite disheartened when he didn’t leave for the final session… honest to goodness, how can someone not be aware that they smell that bad??  And how can people close to them not say anything?!?!  I just cannot understand it for the life of me.  I get self-conscious when I get any slight smell which might be coming off of me… ugh. I just can’t.  Anyway………

The final session of the weekend was another one about autism & females, this time from the Director of Autism at the Priory Group.  Even more validation/vindication about my being convinced of my diagnosis, despite what I’ve been told thus far.  Girls are more passively avoidant than their male peers who can be more “in your face”.  42% of girls with ASD are misdiagnosed with different disorders (e.g. personality disorders, mood disorders, depression, anxiety, OCD, even anorexia); this is a staggering figure – nearly half!!  Girls are more verbally communicative, less violent, more demand-avoidant over time, less rigid and over-focused (although I’d say I’m pretty rigid, but that might be more in relation to my sensory issues).  Clinicians need to look beyond the obvious for obsessive behaviour, problems with multi-processing, sensory issues, demand avoidance and those with a “real” friend.  Again, it was reiterated that there is a bias in diagnostic tools and protocols which are based on “extreme male” characteristics; shyness and oversensitivity are not included in the diagnostic criteria, the questions are not sensitive enough and do not take into account that girls imitate social skills better and that girls are praised for showing love, kindness and empathy (as it is suggested that girls on the spectrum are hyper-empathetic and feel too much as opposed to too little).

I stopped over again at the Limpsfield Grange stand to say goodbye and to say that I will keep things updated on my blog, and was kindly told that I can keep an eye out on the website and to keep in touch because I’m “part of the community and [I’m] not alone in this”.  That was so nice to hear. 🙂

I camped out for about half an hour near an outlet to charge up my phone before setting off on my journey out of London, because I had taken loads of photos and notes so the battery just about died.  Then I had the fun experience of a bus replacement service for the DLR, as it was closed for planned maintenance.  I hate standing on public transport, but especially on a bus because sudden stops which send you juddering forward are so disorienting and horrible.  Thankfully it wasn’t too terribly long to get from Custom House to Canning Town where I then took the Tube out to Victoria station and then caught the Oxford Tube coach out of London.  I hadn’t had anything proper for lunch (just a millionaire shortbread slice and a Coke) and I didn’t stop to pick anything up before getting the coach, as my motivation to get home was greater than that for quelling my hunger.

I had another sensory assault on the coach wherein the group of three women (who really were behaving like teenagers; I reckon they were near my age) were chatting away so loudly that I put my newly-acquired pair of ear defenders on over my earbud headphones (listening to the Manics, of course) which worked amazingly well to silence them so I wasn’t blasting my eardrums with my iPod.  I spent most of the coach journey typing this blog on my Kindle Fire with my little portable Bluetooth keyboard, which was an efficient use of time. 😉  Then suddenly I got a horrible smell in my nose which I soon realised was nail polish… and sure enough, despite the fact that the coach journey was quite bumpy (I had to keep sliding my Kindle back into place as it doesn’t attach to the keyboard), one of the women across the aisle from me was actually painting her nails – WHO DOES THAT ON A BUS?!?!?  I literally could not believe it.  I just glared at her and her friends and carried on working.  Thankfully she didn’t have it open for too long, but honestly, if I wasn’t so self-conscious (and not wanting to stand out even more because of my still-strong American accent) I would have said something along the lines of “I have strong sensory issues and the smell of that is really making me feel unwell; can you please put it away?” but I felt like my shy high school self again and saw the situation play out in my head with them being arsey like popular girls would be and just refuse and carry on.  She might have been perfectly nice and understanding about it, but I did not have the courage to find out.

I think this is probably the longest blog I’ve written.  If you’ve made it this far, congratulations for sticking with it, though there’s no prize for finishing it other than being able to go back to whatever productive thing you could otherwise be doing! 🙂  I’m looking forward to the Birmingham Autism Show next Friday to see a few other talks which clashed with my timetable here, and most importantly I’m looking forward to actually seeing Willard Wigan’s work (nice alliteration, eh?)!! 😀

Take care, folks. xx