Sleep Problems

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. 🌸

‘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! 😊 🌸

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

London Autism Show, Day 1

So, I woke up at 4:40 this morning to get dressed and drive to Oxford to get the coach to London and managed to navigate the Tube (after pre-planning it all, of course, with each Tube line identified, which direction of travel and which stops to get off at) and DLR (a first for me!) to get to the ExCeL Centre in east London.  It has been a long day, but I’m going to persevere and write up my thoughts now while they’re fresh in my mind.

Widgit Software presented about using symbols (i.e. Communicate In Print) and announced that the new version will be released in September.  Quite similar to Makaton symbols, but a bit more colourful and descriptive.  Then a short session about Dyscalculia and how children on the spectrum can struggle with understanding numbers and maths… I was hoping for insight as to why I was good at math in school but still to this day cannot do mental arithmetic to save my life.  I then jumped over to Michael Barton’s talk (author of It’s Raining Cats & Dogs and A Different Kettle of Fish) about surviving at school and succeeding at work.  I remember seeing him speak at last year’s show in Birmingham; his books are about literal interpretations of language and how confusing these phrases can be for people on the spectrum.  I’ll admit, a lot of these phrases I know because they have been explained to me (“wears her heart on her sleeve”, “laughed my head off” etc.) but the one phrase I always have to look up is “butter wouldn’t melt”… I literally only looked it up the other day and I still can’t remember what it means.

After that one, I was keen to see the Speaker of the House of Commons, Rt Hon John Bercow MP provide an exclusive personal perspective on being the father of an autistic son… but when I got into the Autism Matters Theatre, the next session’s slides were already on the screen… they appeared to have changed the timings without any notification, or he just wasn’t able to come… either way, that was disappointing.  I went to grab an early bite of lunch (as breakfast was at 5am) and then saw Tom Bowes speak (quite energetically!) about echolalia improving socialisation.

After a little break mixed with wandering around and having a little sit down and checking on my Sims (yes, I’ll admit now that The Sims FreePlay is my version of Minecraft – just yesterday I created a house to replicate the Morgendorffer family home from Daria – don’t judge me! 🙂 ), I then went to see a talk I was very much looking forward to – Autism and Girls, featuring the head teacher and students from Limpsfield Grange School.  The girls who spoke (two current students in Y8 & Y9 and a former student now in college) did so unbelievably well… I could see they were anxious speaking in front of such a large crowd, but they handled it beautifully.  It is so important for these girls to have a voice in the autism world because (as I’ve experienced first-hand) females have a harder time being taken seriously and need to feel valued and worthwhile.  This school was featured in an ITV documentary last year [I quoted a poem from one of the students shown on the programme in my post titled Disclosure… and relief.] and I could see myself in several of the students there… like, different aspects appearing in different girls at varying intensities.  Later on in the day, just before the show closed, I went up to the stall and spoke to the head teacher, congratulating her students on their job well done speaking in front of the audience today and thanking her for doing the documentary last year, explaining how it was broadcast not long after I had the realisation that Autism/Asperger’s seemed to make sense to explain why I’ve always felt awkward in myself my whole life and it supported me to request a diagnostic assessment.  She was so lovely to speak to – I was a bit tearful because ALL THE EMOTIONS (and I was a very tired girl after a very long day) and she said that there were a few lovely women who came up to speak to her with similar stories, so I can imagine this has been a monumental and rewarding day for her and for the school.  I wish there was provision local to where I live like Limpsfield Grange, because they do such great things for girls on the spectrum [and other needs too].

After that session was back to back sessions about autism equality in the workplace: removing barriers and challenging discrimination, which was quite interesting [I may write a separate blog from my notes on that one, which may help me at work].  Then was a session which was added late to the programme: Diagnosing Autism Spectrum Conditions in Adulthood, presented by a neurodevelopmental specialist from the South London and Maudsley NHS Foundation Trust.  Let’s just say that it stirred up a lot of the still-raw emotions from the last two weeks.

After that session ended I had a 20 minute break until my next session and I went to speak to this specialist at the booth… aaaaaaaand became overcome with emotion [this was actually a couple hours before the emotional breakdown described above… conclusion: I do not function well on little sleep… I was verrrrry apologetic for being in a state].  We went and spoke outside for a few minutes and she was so lovely.  I explained what happened between the two appointments and how I felt after and wrote to the assessors.  [Update for you guys because I didn’t have time to blog about it last night, but I’ve had an email back and they have offered me a third appointment which will be with a psychiatrist, recommending that I bring Paul with me… but it’s not until 11th August – 8 weeks from yesterday.  Not exactly great in terms of timescales, eh???? 😥 ]  I asked what my options were, and I was advised to perhaps speak to Advocacy For All (as they have an autism-specific team) and go for the third appointment.  If I still feel that I’ve not been given the fairest assessment, then I could request from my GP to be referred to their service, as it provides nationwide support (not exclusive to South London).  I was relieved to know that I still had options through the NHS, as I just cannot afford to go for a private assessment.  I reiterated that I only want a diagnosis for personal validation and to put me in a context for what I need to get by in the workplace – not for any untoward reasons (claiming benefits or anything).

After all that emotional deluge, I saw another talk about teaching autistic girls, this time from an autistic teacher – she was another adult woman with a diagnosis that, upon first seeing her speak, you would not have assumed she was on the spectrum.  This, if anything, just reinforces my strong feeling that my assessors got it wrong and didn’t fully take the female element into consideration!!  The final session I attended was called ‘Turning the Triad on its head’, but to be honest it just repeated a lot of the same things I’d heard during all of the sessions (focusing on strengths, not defining by difficulties, etc.).

The recurring theme throughout the day was: if you meet one person on the spectrum, you have met one person on the spectrum; no two people are the same!!

It’s now 9pm and I’m completely zonked.  I had a lovely pizza for dinner at a little Italian wine bar while reading Harry Potter and the Prisoner of Azkaban on my Kindle (not my first time reading it) while it rained as I didn’t fancy a 20 minute walk to the hotel in the rain.  Checked into my hotel room, had a shower, and started writing this!  Now that my thoughts are well and truly decanted, I’m gonna climb into bed and hopefully fall asleep before 10pm. Day 2 tomorrow, and I will follow up with a similar analysis. 😉

Mulling it over…

I have written a letter which I intend to email to the ASC Diagnostic Team tomorrow for the attention of the Speech & Language Therapist and Clinical Psychologist I saw. The majority of it is below, modified for clarity in the context of this blog:

I feel that perhaps enough wasn’t taken seriously or discussed with me in depth from my written questionnaire; you both said that “the person in the room was different from the person in the questionnaire”. I think this is because I have had to “put this mask on so much that it has become my face” and that my most truthful self is the one written about in my questionnaire; it’s too painful for me to reveal that person in a room with complete strangers, though perhaps it would have been better to do so because of the outcome of the two appointments.

I feel that I was discredited because I’m too sociable. I feel that, despite my indicating early on in the first session that my American-ness may work against me here, this was disregarded. Also, being the firstborn in my family could also be an indicator as to why I am outgoing, but being outgoing is not a contra-indicator of ASC; being outgoing is a big feature of being from America – if we don’t take initiative and present as “confident”, we’re classified as “weird”. In England, one is allowed to be quiet and more reserved. I don’t believe that the reality of how I was taught to be was fully taken into account, and certainly, my more ASC-type traits did not come out in just seven hours of observation.

Watch Jennifer Cook O’Toole on YouTube (https://www.youtube.com/user/AsperkidsVideos) – remind you of anyone? She is a well-known writer with ASC and is very American and outgoing, and probably would have been undiagnosed in the UK.

I have related my experience to a fellow female expat who is a writer and public speaker with ASC (I will refer to her as G); I have been chatting with her periodically online since meeting at the Autism Show in Birmingham last summer. She indicated that I may need a longer than average assessment and this would be in keeping with the Equality Act of 2010, which would argue that reasonable adjustments need to be made so that I am not inadvertently discriminated against because I am from a different culture. She said a longer assessment would be totally reasonable to ask for as 50% of the diagnosis rests on how I interact socially and I’m from another country where social interaction is reinforced differently (remember that I was 23 when I moved to the UK, so beyond my formative years). This is especially true if your service is considering denying the diagnosis based on my social presentation. As you know, women with ASC are good at hiding their traits, and American women will be exceptionally good at hiding them. G’s first diagnostic appointment resulted in her being told that she did not have ASC, but following further appointments for a second opinion, she was eventually diagnosed. I did not think that I would have to go through the same uphill struggle that she has; she is also the one who shared the YouTube link above.

Not much was discussed regarding how I felt about being on the periphery of my social group at school, despite me explaining how traumatic it was finishing high school and just completely obliterating my relationships; that is not typical behaviour, especially since I couldn’t identify a particular incident or altercation which caused it. G also read the extended version of my questionnaire and said the following (this was via email communication):

You mentioned feeling like you were on the periphery of your social group at school.  You mentioned being bullied and taking times away from people.  There was some detail but try to dig out more. It may be hard to do with you not being able to recognise and retell the specifics of what transpired or what went wrong. It’s hard to know at which moment you were “being weird” if you don’t know when you’re “being weird”.

A person on the spectrum would be bad at explaining exactly when they “got it wrong” socially, why they didn’t click with the group as well as others. I imagine this is the most difficult part for you to dissect, but this also is the part that your “outgoing” personality masks the most.  They aren’t seeing the social disconnect in the room, so you need to dissect past social exchanges and explain where it has happened.

It’s hard for me to recall back this far, as the high school fallout occurred 12 years ago and my memory is patchy at best. The only things I seem to recall in clear detail are things that had very strong emotions attached, usually of guilt or shame, which I have worked hard to cast from my mind because they are so debilitating. When I think about finishing high school, I can only remember feeling very anxious, uncertain and out of control. I think I cast away my friendships from the past 4-7 years [middle school into high school] at that point because that gave me some semblance of control, despite it completely isolating me between graduation and starting afresh at university in the dorms. I did very little that summer break because all my friends must have grown weary of trying to engage me and dealing with my flat-out refusal. Like I indicated on my questionnaire, I’ve “virtually reconnected” with most of these friends, but we have not spoken of what occurred at the end of high school, and while they are on my Facebook friends list, we do not talk like friends do. We may exchange birthday greetings, but that’s about it – how much more superficial can this be?? We have reconnected as “someone that I used to know” but that’s about it. Does that help?? Just because I appeared on the surface to get along with them all fine in my early years, doesn’t what happened in adolescence obscure that somewhat?

G also indicated that I wrote a lot about rigidity and a need for sameness and routine in my life in ways that have nothing to do with my sensory issues, and she said, “I don’t know how anyone can dismiss these.”

She indicated certain points from my questionnaire under Current Difficulties which jumped out at her:

  • needing sameness when living with Paul’s mother
  • I hate answering the phone, especially at work
  • I struggle being in overcrowded spaces where personal space can be an issue, especially any store which becomes crowded with shoppers prompts me to leave
  • social blindness when out in public
  • group conversations, especially being interrupted and unable to finish my thought or story – present in childhood and adulthood.
  • I can understand sarcasm, but only when context is given
  • perfectionism, which I had always attributed to being a “typical first born”, which can explain why I am so outgoing
  • as a child, I was very particular about keeping my toys in order and in pristine condition; my dad’s questionnaire probably didn’t say anything about this and he would probably have put it down to having taught me to respect my belongings… it was much more than that.
  • I preferred playing alone a lot of the time and didn’t regularly have friends over; I also did not (and still do not) initiating interactions and prefer someone else taking the lead and joining in when appropriate. I do not feel confident in initiating but will only do so when no one else will because I’m frustrated and want to get on with whatever the task is because I can’t take the awkward silence anymore.
  • you had me talk in detail about the bullying that I endured; I thought surely this would have mattered more strongly – again, just because my dad didn’t pick up on it does not mean it didn’t happen; I was quite private and didn’t tell my parents everything or would just tell them things were fine
  • particular about colour-coding things, especially in a ‘rainbow’ order
  • need for symmetry and matching
  • borderline ritualistic about numbers – I even described how Paul’s and my wedding date was “pleasant” – no one else I know has done that
  • resorting to putting on the same movies or TV series that I’ve seen multiple times to have on in the background – I can’t even begin to guess how many times I’ve watched and re-watched Daria on my Amazon Fire TV box or on my Fire Tablet when getting ready (for work or going out)
  • parking space at work and parking near an edge so I can find my car again
  • gauging the speed of fast-moving objects
  • handwriting and drawing – having an awkward grip and not ever being picked up on for it
  • problems with hormonal birth control – although others might not register this, but she agrees this demonstrates a fragile chemistry and I felt was quite compelling

G also attached some PowerPoint slides called Missed Diagnosis or Misdiagnosis? Girls and Women in the Autism Spectrum from Dr Judith Gould, Director of the NAS Lorna Wing Centre for Autism. I will attach it with this letter but I am going to highlight some of the stronger points here:

  • Historically there has been a strong gender bias of more males than females; as a result, professionals are less likely to diagnose girls/women even when symptoms and behaviours are evident
  • Asperger (1944) suggested autistic traits in females become evident only after puberty
    • My dad moved out of the family home when I was 13 years old and only saw me once every two weeks for several years, so he would not have necessarily noticed these traits and would assume my stroppiness whenever he came to visit was because of being a teenager rather than anything else presenting differently to my peers. I would agree that difficulties became more present after moving up through middle school into high school, culminating in the friendship breakdown at the end of my senior year of high school.
  • There is still a strong gender bias towards diagnosing boys (linked with descriptions in the International Classification Systems)
  • Social Interaction
    • Girls more able to follow social actions by delayed imitation; they observe children and copy them – masks symptoms
    • They are on the periphery of social activities [which I highlighted]
    • Girls more aware and feel a need to interact socially
    • When involved in social play are often led by peers rather than initiating contact [I agree with this – I rarely initiate because I don’t feel confident enough to do so.]
    • Girls more socially immature and passive than typically developing peers
    • In primary school more likely to be ‘mothered’ by other girls but bullied in secondary school [YES to the second part for sure; I can’t remember being ‘mothered’ in elementary school.]
  • Social Communication
    • Little difference in acquiring speech in girls and boys
    • Girls generally have superior linguistic abilities to boys of a similar cognitive level
    • In society, girls are expected to be social in their communication but they do not “do social chit-chat or make meaningless comments to facilitate social communication” [when I do make social chit-chat, it’s to quell the awkward feelings when not much is being said… that’s more unbearable for me than sitting in complete silence when there’s a lull in the conversation.]
  • Social Imagination
    • When involved in solitary doll play, they have a ‘script’ and may reproduce a real event or a scene from a book or film [I vaguely recall playing with my Barbies with an almost soap opera-like script, as when I was at home with my mother, she would regularly watch The Young & The Restless.]
    • There is a lack of reciprocity in their social play and can be controlling or domineering [I would get cross if my little brother wasn’t playing the way I wanted him to, which would lead to him and I bickering and fighting, which was probably minimised to sibling interaction.]
  • Special Interests and Routines
    • The male stereotype of autism has clouded the issue of diagnosis
    • Girls are more passive and collect information on people rather than things
    • The interests of girls in the spectrum are similar to those of other girls
    • Perfectionism is frequently seen in girls [Ding! Ding! Ding!]
    • It is not the special interests that differentiate them from their peers but it is the quality and intensity of these interests [I minimised the intensity of my areas of interests in the appointments because I have enough social wherewithal to know when it is and is not appropriate to talk about them in great detail, but that doesn’t mean that they are not there. Again, something not touched on much in my two appointments.]
  • The Diagnostic Criteria
    • The current systems do not give examples of types of difficulties shown in girls
    • There is a need for a wider perspective regarding social, communication and imaginative dimensions in addition to special interests and rigidity of behaviour
    • There is a need to ask the right questions and make appropriate observations
    • Over- and under-reaction to sensory input is an important feature for all on the autism spectrum and is common in females
  • The Importance of Diagnosis
    • A diagnosis is the starting point in providing appropriate support
    • A timely diagnosis can avoid the difficulties women experience throughout their lives
    • Diagnosis can lead to assessment of needs in employment (amongst other areas)
  • Dale Yaull-Smith, NAS Communication, 2008 – “The fact that girls with undiagnosed autism are painstakingly copying some behaviour is not being picked up on and therefore any social and communication problems they may be having are also overlooked. This effort of mimicking and repressing their autistic behaviour is exhausting, perhaps resulting in the high statistics of women with mental health problems.”

I don’t dispute that there may be an element of Sensory Processing Disorder on my part and look forward to meeting with the Occupational Therapist to discuss this further. I have also purchased Too Loud, Too Bright, Too Fast, Too Tight to investigate things further (like I have done with Aspergirls and the other ASC books I have read) in the meantime whilst I’m awaiting the appointment to be made. However, I still feel that my diagnostic process was too short and inconclusive. I’ve been doing my best to keep myself back from the edge of completely shutting down and being signed off work until this is resolved, mostly because I cannot afford to be off work long-term and I know myself enough that if I were to cave in and stay at home in bed, it will be infinitely harder to pull myself out of that funk and get back into work than just persevering with it, no matter how much it emotionally drains me.

You want to see the real me? Please read between the lines of my questionnaire again. Read between the lines of this letter. Yet again in my life, I feel like I’ve been misunderstood and it hurts me to my core that I have to practically beg for this to be understood. The thought of going into work today and facing people was too much to bear, so I’m working from home. I feel like raw nerve endings – on edge, anxious, unsettled, unsoothed – even a nice shower didn’t alleviate my anxiety this morning. Is this what you needed to see? This is the person that is in the questionnaire; I’m sorry you didn’t get to see her in those two short appointments, but considering that I’ve had 31 years of adapting my behaviour to appear “normal”, I think it takes a bit more than six hours to get to see her, especially since she knows how to behave in a clinical setting.

 

First appointment down…

So, with all the last-minute nature of things, I was quite anxious Friday morning and went in with my stomach in knots.  I was welcomed in by the lady I’d been emailing and speaking to on the phone.  She handed me a clipboard with a brief sensory questionnaire which I completed quite quickly.  Just as I finished, another woman came in (I assume another client) and sat down diagonally opposite me.  The therapist  who ultimately was going to be assessing me came into the room and addressed the other woman first (before me) and they started talking about going running etc. which I just tuned out to, mildly annoyed when she finally looked over to me and said, “Ready whenever you are.”  and I said, “well, if you’re ready to go then…”  I didn’t mean to be deliberately rude, but small talk like that when someone might be quite anxious and irritated by the whole thing isn’t exactly helpful.

We went upstairs and into a small office which was comfortably dim but scantly decorated (no lights on but just indirect daylight through the window).  The therapist was a retired Speech & Language Therapist brought back in to work with this service, which was only established two years ago.  She spoke casually to help bring my anxiety down and started asking her questions to embellish on my responses for my questionnaire.  Can’t remember if I mentioned it in a previous entry (and I’m too lazy to go back looking), but I sent three versions of my questionnaire through… the full version, which primarily was comprised of long passages from my “This Is My Truth” document I started writing last year, embellished with quotes from Aspergirls by Rudy Simone to back up my responses; a significantly redacted version to make it more brief, because I thought whoever got landed with it might not want to read the full long thing; and then a ‘medium-sized’ version, because I thought the redacted one might have taken out too much, so I put some stuff back but kept the Aspergirls quotes out.  She said that she had read the redacted version, so I said at various points that some of my answers were expanded upon in the long version.

It was crazy how fast the time went with answering the questions.  Some were harder to answer than others; remembering stuff about my time in school was particularly difficult, as was talking about my mother, but talking about how people using my desk at work and moving everything around upsets me (more than it reasonably should) led to me becoming quite animated.  I had some advice from the public speaker I had befriended at The Autism Show last year to make specific mention of my “American-ness” possibly masking my traits even more because we’re encouraged to be more “bubbly” and outgoing.

After the open-ended questions (which took up most of the session), I was asked questions from another scaled questionnaire (similar to the AQ Test but quite a bit different) where I had to answer questions as “Always True”, “True as an Adult”, “True as a Child”, and “Never True”.  Some of these questions I was able to answer quite easily (sometimes with a dropped-tone “yes” with a shade of embarrassment and an uncomfortable giggle) and the others I really had to think and make a best-guess answer.  I think she said it was 50 questions long too, but it didn’t seem to take too long because it was quick responses instead of long explanations.  She explained to me at the end of it (as a means to assuage my anxieties about being misdiagnosed with a mental health condition instead of Asperger’s/Autism) that when they have a client who presents with clear mental health needs (above and beyond what occurs in Autism) that for the second appointment they would ask the psychiatrist to attend, but she assured me that she did not think that I have any other co-existing mental health needs, so that was actually a relief.  Next week is the ADOS assessment with the same lady I saw then and a clinical psychologist, and I was advised that I should know my diagnosis relatively quickly, as they recognise how difficult it can be to be left wondering for too long after.  So, I think that means that by the end of this upcoming week, I may have my diagnosis after nearly a year.  I can’t quite process it.

Believe it or not, I walked out of there (after three hours and forty-five minutes!!) feeling surprisingly happy and light, rather than overwhelmed and done-in.  The worst part of the day was trying to get back to my office… let’s just say the motorway was crawling with people travelling back north after their half term breaks on the southern coast… aaaaand it took over an hour and a half to get to my destination.  The only reason I went back to work afterwards was because there was a caseworker evening out planned over a month ago and I didn’t want to not go (yeah, a roundabout way of saying that I wanted to go).  A nice evening was spent with my caseworker colleagues… cold drinks, conversation, a delicious dinner and sweet dessert.

Yesterday was another full-on day… met my tattoo artist first thing in the morning to go over my tattoo design that is going to be inked in three weeks’ time, then went to meet three friends from the admin part of my team for lunch and hung out with my closest friend from that trio for a few hours afterwards.  I came home and sorted out my iPod with the second set playlists from the last two Manics concerts we saw – Cardiff Castle a year ago today and Swansea Liberty Stadium last Saturday.  I was especially excited to find the BBC Radio 2 compilation of 80s songs which included their cover of (Feels Like) Heaven which was included in last Saturday’s second set.

I listened to the Swansea playlist this morning on my way up to my chiropractor appointment, which helped me feel calm despite waking up feeling a bit overwhelmed.  I adore my chiropractor and it’s not so much that I was feeling overwhelmed or anxious about my appointment specifically because I know what to expect, but I think I’ve just had a lot of input this weekend and I feel my energy levels are diminishing.  What didn’t help things on the drive there was that my Google navigation always seems to take me a different way to her new clinic, which means I have to keep using my navigation app because I’ve not yet learnt the way there so that I can drive without using it.  What especially didn’t help were the frickin’ cyclists on the twisty-turny country lanes I was driving to get there and back.  If I had £1 for every cyclist I encountered on the round trip, I’d have enough to have paid for my appointment.  The worst was a man who was running uphill towards oncoming traffic… like, a good three feet over from the edge of the road.  I was getting more and more cross as the journey went on and had to just come home.

I texted Paul to say that I wasn’t going to be going grocery shopping because I’m fed up with going on my own (which he’s tasked me with the last few weeks despite my protests) and am not leaving the house again (today, not “ever”).  I’ve come home and put a load of laundry in the machine and started writing this entry… it’s taken me a good nearly four hours to get it all done, with a few breaks to hang the laundry outside and have lunch.  I came across this article about Executive Dysfunction which beautifully explains what I feel when I become too overwhelmed with things and start “moving like molasses.”

And that leads up to this exact moment in time, wherein I will bid you adieu until after my second appointment.

It’s happening… It’s finally happening.

So this morning I had a phone call missed from a number that I thought I recognised… it’s local(-ish) to where I live, so originally thought it might be the dealership where I bought my car begging me to test drive their latest whatever.  Googling the number elicited no hits, so I went to my Gmail inbox and searched for it… and had one email thread as a hit – the Autistic Spectrum Condition Diagnostic Assessment Service.  It was only six minutes since they rang when I called back… spoke to the lady I’ve been emailing and she said that she had to “remember why [she] rang [me] in the first place” and that she’d ring me back in five minutes… fifty five minutes later, she rang back and informed me that there was a cancellation and could I be available tomorrow morning at 9:30 and next Thursday at 14:00… I said of course and thanked her for ringing me.  She confirmed my email address and said she’d be sending me the letter, map to get to the clinic and a photo of the building.

Oh. My. God.

Bearing in mind that in April (see my blog post That took effort.) I was told that I could expect an appointment in July or August, I had been preparing myself for that eventuality, so to have this come up so quickly [especially after emailing my MP as part of Autism Awareness Month through the National Autistic Society, but more on that in a minute], I have had no time to mentally prepare for what is going to happen tomorrow… but perhaps this will be for the better, because it’s not like an interview where you have to put your best self forward… it’ll be better if they see the raw, unmasked and vulnerable version of myself that no one has ever really seen…

I know that writing to my MP (which sounds so uppity and Daily Mail reader outrage-ish) had no impact on there being a cancellation, but I can’t help but wonder if my name has made its way up the list because of sharing my story with him.  I shared a very abridged version as part of a form that the NAS had on their website prior to the Parliamentary debate on 28th April about the national Autism strategy.  I had an email back from him thanking me for sharing my story and:

Delayed diagnosis of autism causes needless suffering, and I am committed to ensuring that people with autism spectrum disorder (ASD) lead fulfilling and rewarding lives, a commitment the Government shares.

Delivery across health care is a Government priority, and the Adult Autism Strategy means we are improving care for those with ASD. Government guidance sets a clear direction for how health and social care can continue to improve services to deliver fulfilling and rewarding lives for people with autism.

The Government has introduced a new birth-to-25 education, health and care plan which sets out in one place all the support families will receive and help bridge the gap between education to employment and independent living.

For children, the Government is funding £750,000 in 2016/17 to the Autism Education Trust to provide autism training to teachers. This ranges from basic awareness training and practical knowledge through to more advanced training for school leaders. To date, the Trust has arranged training for around 90,000 education staff.

NICE guidelines on autism make it clear that people should wait no more than three months to start diagnosis. Every part of the National Health Service should be keeping to these guidelines, however decisions on how money should be spent locally are for clinical commissioning groups.

I know this means a lot to you and I will continue to monitor the situation closely.

I sent back that I was aware of the Education Health & Care Plans as I write them on a daily basis and that, unfortunately, I’m a few years beyond the age range (and to be fair, knowing the criteria, I don’t think I’d fulfil it anyway!) and that “If NICE guidelines indicate no more than a three-month wait (which I was not previously aware of), then things urgently need to be reviewed within the local NHS Foundation Trust, as I am still awaiting confirmation of my assessment appointment.  I have chased up a rough estimate and was advised “possibly July or August”, which will be just over a year after requesting an assessment.  As I originally wrote in my first message: ‘It will be a year in July since I requested my assessment, but because of a breakdown in communication between my GP surgery and the Assessment Team, I emailed and called to chase up my referral (as I’d not heard anything) and it was never received by the Assessment Team. As such, my referral and subsequent place on the waiting list was delayed by 6 weeks, which has caused me a great deal of undue anxiety and stress. Because I have adapted and built up a repertoire of coping skills over the years, I was able to chase it up myself without anyone else’s help, but I must stress how terribly upsetting the whole thing was and I had to emotionally wrestle myself back from the edge of a colossal meltdown.'”

After sending that email reply, a few days later I had a letter from the House of Commons in the post on my MP’s headed paper, saying: “Thank you for emailing me about Autism.  I am very sorry to learn of the challenges you have faced with getting an assessment and support.  I have raised this issue on our behalf with the local NHS Hospitals Trust Foundation and I will let you know of their reply in due course.” [He also included excerpts from the debate but I doubt you’re that interested in all of that from my letter, but you can find it on Hansard – World Autism Awareness Week.]

Thankfully, my managers were both really supportive and wished me luck for tomorrow (not that they wouldn’t be supportive working in a SEN Team, but they could have been a bit awkward with how short notice it was).

On a completely separate note, we went to the chip shop this evening and I opted for a burger instead of my usual battered sausage and curry sauce.  The girl brought over the empty bun to put salad and sauce on it… and I was horrified to see that she had brought over a buttered roll.  Like, a buttered bap that is individually wrapped by the till.  WHAT!?  WHO PUTS BUTTER ON A BURGER?!?  That sounds like an American thing if anything… my polite filter wasn’t on and I said, “Um, I don’t want butter on it.”  and the girl was a bit taken aback and had to warm up an unbuttered roll from the fridge.  I’m sorry, but if we’re paying money for a burger, I should be able to have it how I want it… never before in my life have I ever had a burger with butter, nor will I ever!! Blech!!

So, wish me luck for tomorrow…

Protecting Oneself

Alternate title: Letting People Down & Feeling Deep Shame and Guilt

I’m having an ethical dilemma… before Christmas, I said I’d go along to this Peter Kay’s Dance for Life event in Birmingham with Polly (a person I am friendly with from this singing group I used to participate in)… and my anxiety was starting to creep up because I couldn’t find any details about it, and then when I realised that Paul & I were going to attend a Thanksgiving service (like a Christening but not) the day after (even though I’d technically agreed to go to the Peter Kay thing prior to the service’s arrangement), I messaged Polly saying that I’m worried about having a very late night when we’d have to get up early for this service where I’m participating in it as well (which isn’t a lie!), but I just feel horrible letting her down and she’s not given me details (bank or PayPal) to pay her back for it.  We’ve left it last week that she was going to try to find someone else to use the ticket, but I’ve not heard back yet and I REALLY do not feel comfortable going anymore… I found a video on YouTube and it basically looks like sensory overload + too many people…

Like, my biggest frustration is that I want to want to go, because it could be a lot of fun, but I’ve already psyched myself out of going and I just can’t bear it.  The primary problem being that the last thing I want to do is upset Polly, but it doesn’t help that I haven’t seen her in months (not since the funeral of a former member of the same singing group) and I’m not close enough with her yet to be able to share this whole Aspie journey that I’m on… I don’t know what to do. 😥

When I’ve had a very full-on experience, it drains me mentally, physically and emotionally… and I worry that if I went along to the Peter Kay thing that I would be coming along to the Thanksgiving service tired and overwhelmed from the night before, especially since I’d be getting back late (after the crush of trying to get out of the venue and ultimately back home) and I don’t fare well on limited sleep, particularly when I need to be my sociable self in a group setting.

It’s very troubling being in my brain… like all of the time.

I feel horribly guilty and am probably beating myself up more than necessary, but that’s what I do best. 😦