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
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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. 🙂 🌸

Facebook Toxicity

This will not be a political post, but I will be making reference to the current political climate online, especially on Facebook.

I joined Facebook in November 2004 – one day after I turned 20.  I am now 32, which means that I’ve spent just over 1/3 of my life on Facebook.  This fact in and of itself depresses me to a certain degree.  Of that time, 2/3 of it has been me living in the UK; I use this as an excuse for keeping it going, as it “keeps me connected” with friends in the US, as well as my cousins & aunt.  However, I am finding myself feeling increasingly upset/frustrated by scrolling through my news feed.

The state of the world at present terrifies me.  Being Aspie, I’m resistant to change at the best of times (even the supermarket rearranging their shelves and it taking me an extra minute to find what I’m looking for is enough to send me into a mini-tizzy) but the swing from the 44th to the 45th President of the United States is as polarised of a swing that we’ve experienced in a generation.  Even though I’m living 3,500+ miles away from America, their level of power in the world arena is undeniable.  I am deeply worried about the future of the world – its citizens and the environment.

Facebook in 2004 was very different from today.  It was exclusively university students (needed a .edu email address to sign up!) and consisted primarily of frat party photos in varying degrees of fancy dress and “poking” wars with a crush.  Today, it’s full of baby photos (first, second or even third babies now), wedding reception photos, and long diatribe rants about the latest political news.  I am interested in others’ points of view and in learning more about what I may not understand, but the tone of people’s comments has been becoming increasingly vitriolic, especially from people that I “used to know” (i.e. went to high school together but haven’t communicated since before we graduated).

I don’t think anyone would deny that Aspies are highly sensitive individuals.  We take on the emotions from those around us and can feel really drained when energy is running high.  Because so many on my news feed are friends from America, I’ve been kept apprised of the political goings-on, especially during the bloodbath that was the 2016 election.  Many of my friends shared articles from trusted journalistic outlets, but then I’d see there were over 20 comments on the post, most paragraphs-long, decrying “liberal bias”, “skewed facts”, and other scathing remarks.  I opt not to jump in with the comment brigade for fear of being slammed down and hurled a plethora of insults – not because I’m a “special snowflake”, but because I don’t seek out recreational abuse from the trolling types.  It’s bad enough seeing exchanges like this on friends’ posts – I can’t bear anymore to look at the thousands of comments on posts by public pages, where the real internet trolls feed and thrive.

It has been recommended to me to contact the counselling-by-telephone service Let’s Talk… I’ve used it several years ago, but I do not feel that their services would help me at present.  I find that since becoming self-aware of my Aspie-ness and understanding how my mind works a bit better than before, I am able to unpick things myself and talk things through with likeminded friends (especially my fellow Aspergirl sisters – you know who you are 😘).  I recognise that I’m burnt out at present – likely from being too strong for too long – and I need to retreat into my protective bubble to recuperate and regroup.  Part of this will be actively self-limiting my use of Facebook, unfollowing those whose posts will likely cause me undue anguish, and outright unfriending those with whom I have no active connection anymore.  I have seen articles over time talking about how people can become depressed by using Facebook, as we tend to self-censor (i.e. putting our best selves forward for others to see) and if we do it ourselves, of course others on our newsfeeds will be doing this, so we base our own lives on the filtered versions of others… no wonder we end up feeling inadequate and down.  It takes a strong person to recognise this and pull themselves out of it.

I know I am a strong person so with my level of determination, I will be able to do it.  I just cannot rush it.  My lack of patience for waiting will interfere, but having several voices of reason around me will help keep me in check.  This is going to sound cheesy and cliche, but seriously, since joining the International Aspergirl Society and becoming actively involved with members, finding the sisterhood has been so amazing.  While we are all individuals with unique life experiences, there is a common thread that we all share which helps us (or at least this is true for me) feel less alone and isolated.  I am so grateful and do not take it for granted whatsoever.  This has helped keep me going over the last several weeks where I was feeling quite sad and alone.  Now I feel like I can face what life throws at me because I am supported and loved. 🌸

15 Reasons I love my Asperger’s / #actuallyautistic friends

Yet again, The Silent Wave has written an amazing post that I identify so much with. If you don’t already follow her, best to get that sorted out pronto. 😉🌸

the silent wave

Discovering the truth about my Asperger’s/autistic identity was in itself a complete life game-changer.  The discovery alone was its own gift, a head-nod from the universe or the cosmos or whatever that said, “you’ve worked hard enough; you’ve earned a little nudge, a little loving push, a little…secret decoder key that will suddenly clarify your entire life such that when you turn this key, your entire life will make sense to you.”

OK, cool.  Glad we’ve established that. 🙂

If the discovery was that monumental a gift, just wait–there’s more!  My Asperger’s/autism discovery and resulting identity had a ripple effect, a perpetual gift that just keeps giving and giving…

And that, my pretties, is that when I found my true identity, I also found my true community.  The place–and the people–to which and to whom I finally feel like I belong.

Over the past several months, I’ve been attempting to…

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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!” 🌸