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! ūüėČ), 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! ūüė䬆ūüĆł

Interview with Samantha Craft of Everyday Aspie

When Samantha Craft of Everyday Aspie posted on her Facebook page about doing a “blog tour” of interviews with other bloggers, I had to reach out!¬† She may be best known for doing the unofficial but widely shared list of¬†Ten Asperger’s Traits (Women, Females, Girls) – one of the first lists I came across during my preliminary investigations into my own Aspie-ness.¬† I am grateful for her time in completing my interview questions and I hope you enjoy getting to know more about her! ūüėäūüĆł

Firstly, thank you for your time and welcome to …i am my own experience… and this “stop” on your blog tour!

Thank you for taking the time to interview me.¬† I love the name “Cherry Blossom Tree.” ¬†I have a beautiful aged cherry blossom tree right out my dining room window.

I’ve really enjoyed reading your book, Everyday Aspergers¬†[Amazon UK eBook], and understand that it took ten years to compile and get published – a big achievement indeed!¬† What brought you to writing a blog in the first place?

Yes. I am quite relieved the process is over. ¬†It still feels a bit unbelievable.¬† Thank you for taking the time to read the book. ¬†I appreciate that. ¬†I began blogging in my mid-forties because I was confused by my own diagnosis in regard to what Asperger’s meant to me and how it related to who I already was.¬† I also continued writing because of an experience I had at a university I was attending, in which I was shamed for mentioning I had Asperger’s Syndrome.¬† I was motivated to keep writing to show others they weren’t alone and to spread the word about autism, particularly autistic women and late-age diagnosis.¬† But mostly, it was a place for me to process my own thoughts.

Can you tell me about what has helped you in blogging?

Hmmm.¬† That question can be taken a few different ways.¬† What helped me to blog was all of the thoughts and ideas I had in my head.¬† Getting the diagnosis triggered this whole self-analysis, and that in turn triggered my need to express myself through writing.¬† I’d say the angst inside was a primary motivator, that and the initial support (and later ongoing support) that I received from other bloggers, and later on fellow Asperians

How would you describe your blogging style?

At first I largely entertained.¬† I thought I had to produce something of value to keep anyone interested.¬† There is a lot of humour in my writings during¬†the first year on my blog Everyday Asperger’s.¬† Later, I started to write from the heart, to purge my soul, so to speak.¬† I would simply sit at the computer and listen to myself tell me what to write.¬† It was similar to taking dictation.¬† I just wrote what I heard… my fingers typed.¬† It was a¬†very healing process¬†and very therapeutic.¬† I rarely set out to write on a specific subject or topic, and let what was in me rise up and spill out onto the pages.¬† Most of my time went to editing, sometimes a few hours,¬†because of my dyslexia and dysgraphia and the way I process language.¬† The content itself flowed out quite naturally, and sometimes too fast for my fingers to keep up!

Was there a particular author/writer who inspired you to write?

No.  I did run into AlienHippy at the start.  She has a wonderful Christian-based blog on her experience as an adult Asperian.  If anyone motivated me to continue on, it was her, and a few others; not because of their writing, but because of their kind spirits.

Can you briefly explain for my readers about when you first wondered if/realised that you might be on the Autism Spectrum?

I first seriously considered I might be on the spectrum after I had been taking my middle son to therapy.¬† As part of the requirement for the master’s degree program in counselling I had started, I had to visit a mental health therapist.¬† She happened to be my son’s therapist, and I asked her if she suspected I might have ASD, and she was most definitely sure I did.¬† From there, I sought out an official diagnosis.

How has writing your blog helped you during your diagnostic journey? Has it been a hindrance at all?

The only hindrance happened when one person was offended by something I did/said on Facebook, which I cannot remember at this point, nor can I remember the person’s name.¬† (That’s one of the benefits of dyslexia, face-blindness, and short-term memory issues – I don’t often remember people who, at one point or another, caused me strife).¬† I was deeply vulnerable the first year or so after I was diagnosed and took people’s opinions to heart.¬† I have sensed grown a lot and have tons of strength.¬† But back then, I almost stopped blogging based on judgments and assumptions a person was not only saying about me but spreading on Facebook.¬† I actually wrote a post about the entire experience, not referencing the person or supplying clues about the person.¬† I didn’t wish any retaliation to come that person’s way.¬† I was deeply hurt.¬† But overall, astonishingly, with well over 1 million hits on that blog, that was the only incident!¬† I certainly didn’t think when I started I would be blogging over four years, that’s for sure.

When did you get the idea for My Spectrum Suite? How long did it take for it to become what you hoped for it to be?

When I was about to publish my book, I wanted to form a company to represent the book, beyond the publisher.¬† I wanted a place to display activities associated with Asperger’s, speaking engagements, and share about some of the awesome people I met on the spectrum.¬† I created Spectrum Suite to showcase Aspergians’ gifts in art and literature.¬† I also have a great resource page their of other ASD professionals and artists.

How has becoming a known name in the online Autism/Asperger’s community been for you? What (if anything) would you change about it?

It doesn’t feel real most of the time.¬† When I went to the FABULOUS ANCA Worldwide Autism Festival event in Vancouver, Canada in early October this year, I walked into a formal award event and the sweetest lady (animation artist), Liz, turned around and said, “Are you Samantha Craft?¬† You are my idol.¬† I’ve been following you for years.”¬† Then the lady behind me, another nominee up for Community Mentor, tapped me on the shoulder and whispered with a smile, “I follow your blog, too.”¬† Turns out most of the women from the US at ANCA¬†knew of me or my blog.¬† That felt strange.

I don’t often¬†feel emotions about what I’ve accomplished.¬† I know logically I have accomplished something but don’t feel any sense of pride.¬† The process¬†felt necessary and natural to me — to process, to share,¬†to¬†give, to connect, to write.¬† It wasn’t something I set out to do; meaning, I didn’t set out for people to know me.¬† When I do feel a sense of accomplishment is when I am able to connect one autistic to the others I know and form new friendships and companionships for individuals.¬† I am most happy about that.¬† I cry about that.¬† The rest doesn’t seem significant, even though perhaps it ought to.¬† Kind of like if you brushed your teeth and got thanked for it.¬† I was doing something I felt I not only needed to do, but had to do.¬† It was my calling and soul’s purpose.¬† And I benefited from the experience internally, just as much as anyone else, if not more.

I’m quite excited to be part of the International Aspergirl¬ģ Society with you! As it’s still quite new, what do you hope for the future with this Society and for Aspie women and girls?

That’s great you are a member.¬† With all I’m doing, you need to nudge me and remind me to pop on in.¬† Rudy has some great videos listed there.¬† I¬†hope that her¬†vision for the society is reached and that more and more women find a voice, connection, and a way to use their gifts.¬† I think organizations like Rudy’s can go along way in providing opportunity, education, awareness, and a safe place for autistics.

If you had the chance to speak to your younger self, what advice would you give her?

I actually wrote a letter to my younger self twice in the book.¬† One about letting her know everything is going to be okay and one about puberty and boys.¬† Those are the things I’d still tell her.¬† I’d let her know that despite what she thinks she is brilliant, loving, pretty, and going to be safe one day.

To conclude, what would be five random facts about you that no one would ever guess? [these don’t need to be too personal, but just a bit fun!]

Oh, that’s a great question! ¬†Let’s see.¬† Most people know so much about me! I like to joke I am a literal open book now . . . hmmm . .¬†Off the top of my head:

  1. My uncle dated Patty Hearst. (I love to share that one for some reason)
  2. I am very self-conscious of my upper arms, and have been since I was in my 20s.
  3. I get mad at myself, if I think anything judgmental about anyone.
  4. I don’t know if I ever want to write another book, after the long process to write the first.
  5. I love my toes. They are really cute.

Thank you for this wonderful interview. Thank YOU for your lovely responses!

Please be sure to check out Samantha Craft’s pages across the Internet!

My First Special Interest: The Beatles

strawberry-fieldI’ve been a Beatles fan for as long as I can remember. ¬†Growing up with a British father pretty much guaranteed that I would be a lifelong fan, though I can’t exactly say that the same follows for a handful of bands my mother liked (*cough* Jethro Tull, for example *cough*).

I grew up in a household with a plethora of CDs and a fair few Rock & Roll Encyclopaedias. ¬†I loved looking at the album artwork for the CDs and through the contained booklets and their photographs and printed lyrics. ¬†I would sit for ages flipping through the rock & roll books and read up on almost anything and everything. ¬†When I worked out the discography order of The Beatles’ albums, I proceeded to listen to them in chronological order (because anything else is sacrilege) in order to immerse myself in the music. ¬†I learned the lyrics with almost encyclopaedic precision. ¬†I can pretty much tell you what album any song is on and what year the album was released. ¬†We had a LaserDisc player when I was growing up – which my husband loves to rib me about because of its now obsolete existence, but I maintain that I was watching HD video before HD was a thing!! – and we had The Beatles films of A Hard Day’s Night, Help!, Magical Mystery Tour and Yellow Submarine on LaserDisc, which I would watch frequently and scan back (“rewind”) my favourite lines over and over again to try to pick up their subtle but brilliant British wit.

What always disappointed me though was that not one of my friends in school were as remotely interested in The Beatles as much as I was, if interested at all (*scoff* philistines). ¬†I learned quite early on that when no one else is as interested in the same things as you, you stop waffling on about it because no one will like you. ¬†It was a very tricky thing to suss out and conclude because I desperately wanted someone else to be as excited about The Beatles as I was, but was sorely disappointed that in my very small town (and an equally small selection of peers) I was unable to find that person. ¬†I was grateful that my three closest maternal cousins loved watching A Hard Day’s Night¬†whenever we had a sleepover at our house with them and always laughed along with me at the funniest parts.

When the Anthology series came out in (*gasp*) 1995, little 11-year-old me was entranced and enchanted by the old footage and learning absolutely everything possible about my first favourite band. ¬†I think this is when I first developed my crush on Paul McCartney… it makes me cringe writing that now¬†because he’s¬†42 years my senior and a crush like that is clearly wholly inappropriate, but I found younger Paul (circa 1964 to 1967) really cute; Let It Be era and beyond? Meh – too beardy, too much mullet. ¬†Now? ¬†Absolutely not, bless him – I’m not one of those women who goes after much older men, especially one who is older than my own father! ¬†I just liked how he looked then, thought he had a very cute face and I think I was intrigued by him being left-handed too (always kinda wished I was ambidextrous). ¬†It’s so hard to explain without feeling absolutely reduced to being 11-years-old again!! ¬†My friend Katherine Uher (formerly known as Green) did an amazing presentation about Romantic Attachments for Girls with ASD at The Autism Show this summer (check out the PowerPoint slides here). ¬†I still like watching old Beatles footage and sometimes just staring at young Paul McCartney’s face… hell, it’s why I chose my husband’s alias on here as Paul!¬† I don’t mean for it to sound creepy, but I don’t know how else to explain it. ūüėü

The funny thing though is that when I look back at boys/guys that I’ve had crushes on in the past, with one exception, all guys that I liked sort of fit the young Paul McCartney archetype – tall, lean (not “skinny” as such), dark hair, dark eyes, cute/kind face. ¬†I’d dare to say that my husband fulfils this “criteria”, as it were – I’ve always found him very cute and nice to look at; he does not see himself as being especially handsome, but I tell him frequently that I love him and find him very attractive. ¬†Please do not interpret this as me being superficial or shallow; obviously, he and I have chemistry and matching personality attributes which led us to date and subsequently get engaged and married (five years married, eight years together come January 2017). ¬†What I’m simply saying here (in probably not the most articulate way) is that I have a definite “type”, I suppose.

Of all the non-essential information out there that could possibly occupy the precious real estate of my brain, I think there are definitely worse things to have in there other than having the order of the album releases, the entire scripts of their films (well, maybe not as airtight with Magical Mystery Tour), being able to hear a song and tell you which album it’s on, and having all the lyrics to all of their songs emblazoned in my mind forever. ¬†I’ve always suppressed my feelings of¬†utter geekiness¬†around¬†The Beatles because I never saw anyone else being as deeply¬†interested as I was.¬† Whilst “my Paul” (husband) understands, appreciates and respects my love of The Beatles and has learned more about them through me, it’s still my own special interest. ūüėĬ† We went to Liverpool for my 30th birthday and did a Beatles Fab Four Taxi Tour¬†[highly, highly recommend] and saw many important Beatles landmarks in Liverpool – categorically the best birthday ever!!¬† The Strawberry Field photo at the top is from our trip, as well as the two photos below.

Thank you for reading my Ode to The Beatles!! ūüėÄ

Yoga: Not “just like Pilates.” At all.

I will apologise at the off here because I don’t know if this will end up making any sense but I need to vent and process this out of my head.

I’m sat in my car outside our new gym (part of a Holiday Inn hotel) while Paul is carrying on with a yoga class inside. “Why?” you may ask. Well, let me rewind a bit.

We changed gyms a few weeks ago because it got to the point where I could not cope with the constant clanging and banging of the weight lifters in our massive gym, even with my ear plugs, and I was not about to start wearing frickin’ ear defenders in the gym (a. They pinch my head when worn for too long; b. I didn’t want to stand out). Also, the high number of “roiders” (big muscley guys) and their predisposition to wearing stringer vests with no antiperspirant deodorant was enough to make me gag… There was one particularly hot afternoon about a month ago where Paul said to me, “Do you smell burger relish?” I did, but it wasn’t burger relish; that was the lovely stank of B.O.

Paul agreed to look at another gym on the opposite side of the roundabout from the one we were attending because he knew (from previous membership) that it was a lot smaller and thus would be quieter than the much bigger one. We looked at it and we liked it, so we signed up. On reflection, the reason we stayed at the big one longer than I would have liked to was because we really enjoyed our Pilates classes on a Monday night with our lovely instructor. Thankfully she does classes locally in village halls, so we’re going to start attending once a week.

Looking at the class schedule at the new gym, we noticed a class called Pure Balance and asked what that entailed. We were briefly told that it was “like Pilates but focusing a bit more on strength” (whatever that means). We had a wacky week last week because of the bank holiday last Monday, so we thought we’d try it out this week on Wednesday (today). When we were in this Monday, we asked to put our names down and the guy behind the counter said that because the instructor was away, this week it would be Yoga. I was hesitant because my only ever previous experience of yoga ended badly (I tried a yoga DVD in my bedroom of my undergrad on-campus apartment in 2006 and nearly pulled out my back), but Paul said that we should just give it a go. 


At the start, she asked if anyone was new, so I awkwardly waved my hand and said that we (Paul and I) usually do Pilates. I think she said that we’d find this “a bit different” because you tend to hold poses for longer in Pilates. And by “longer”, it’s practically a minute versus the split-second hold-and-change that was occurring in front of me.

For someone who has difficulty processing a lot of language at once, let alone from someone unfamiliar, doing something that I have no real previous experience of, it was a perfect storm – a recipe for disaster – and led to the classic “fight, flight or freeze” survival mode. I first froze, then I fled.

This was after less than ten minutes.

I could not understand what she was saying, in so much that I was trying to process whatever she was saying whilst watching the accompanying actions, but I could not move that fast and I could not keep up. There was no way that I could last a full 55-minute class of this. So I folded my mat in two, picked up my FitFlops and tiptoed out of the room… from the front row, furthest away from the door.

Good grief.

I had to move quickly before I burst into tears and inadvertently turned it into a full-blown meltdown. Hence why I’m now sat in my car, writing this blog on my phone whilst waiting for Paul to come out so we can go home.

It’s certainly not the first time that I’ve been this embarrassed, but it’s been a long time since I’ve felt this deeply, horrendously embarrassed.

I’m mad at myself for not being flexible enough, not fit enough, not quick enough to pick new things up. Annoyingly, despite Paul’s more apparent social traits which point to him being an Aspie too, he can just dive right in with classes like this. He was away like a seasoned professional while I felt like a beached whale flopping about on the mat next to him. It was horrible.

So, I think I will wrap it up there and maybe have a little cathartic cry before he comes out (or not, because I am in a public car park, after all). I’m thankful that I have my blog to decant these thoughts out because it would’ve been horrible being sat here doing nothing for the better part of an hour waiting.

The moral of the story: don’t believe anyone who says “Yoga is just like Pilates.”

Update [20:30]: After Paul came out to the car, he said that he understood why I left, but wouldn’t you know it, the pace of the class slowed down after I left and was “actually quite relaxing by the end”!! Rage!! Frustration!! And stupid me, I sat in the car with the ignition on (after putting the windows down) and it nearly flattened the battery, requiring a bump start to get us home. Seriously, FML. It’s a good thing that I had a reasonably good day today at work, made better by a long conversation with a colleague who was keen to get to catch up with me following my final appointment (as we’ve not been able to catch each other over the last few weeks for various reasons). We had such a lovely talk and it made my day to know that she was thinking of me that much. I’m trying to focus on the good and not dwell on the bad. ūüĆł

Reasonable Adjustments

I gotta admit, things are going pretty good here.  I feel very fortunate for this and in no way take this for granted at all.

Since receiving my diagnosis and the advice from the Occupational Therapist, I have had some weight behind my request for reasonable adjustments in the office. ¬†My team works in an open plan, long corridor-type office (almost like a call centre) with horrendous fluorescent lighting and our outside wall is south facing (hence receives the most direct sunlight) with vertical blinds which provide minimum reprieve, especially on very sunny days. ¬†To cope with the brightness and loud nature of the office (phone calls, general chatting, photocopiers being banged about when there’s a paper jam, laughter, etc.), I have had to wear sunglasses and noise-isolating earbuds with my iPod almost all the time every day I was in the office, only taking them off to speak to colleagues coming over to chat about whatever. ¬†I startle easily, and whenever I was interrupted to be asked if I wanted a cup of tea (which I never, ever take anyone up on because I prefer to do my own), especially if I was particularly engrossed in what I was doing, it would take me several minutes to calm down again to refocus. ¬†It drove me nuts.

Prior to getting assessed, let alone diagnosed, I had shared my situation with my line manager and said that I was hoping that a diagnosis would help me to get adjustments made in the office – at that point, she said to me that I didn’t need to have a diagnosis to have adjustments made; however, despite me asking, no adjustments were ever made, other than those that I’d make for myself (i.e. sunglasses and iPod). ¬†One day I forgot my iPod and had to work especially hard to keep myself from having a meltdown, so instead used my headphones with my computer to listen to music streaming online. ¬†And if I ever forgot my sunglasses, it was a guaranteed migraine the next day.

So, since receiving the OT’s advice for reasonable adjustments, I requested if my height-adjustable desk (for back pain experienced due to hunching on standard desks which are too short for someone of my height) could be relocated into one of the “touch-point” rooms. ¬†These small rooms which were likely meeting rooms at one point have small desks with a monitor, laptop dock, keyboard and mouse available for employees working around the county to pop in and get some work done between meetings/visits/etc. ¬†I explained that there would be three main benefits to my desk being relocated into one of these rooms:

  • Reduce/eliminate the need to wear sunglasses
    • as the overhead lighting is less bright and the room itself does not receive direct sunlight
  • Reduce the need to wear headphones with music
    • as the room is naturally quieter with fewer people able to occupy the space and the ability to shut the door
  • I will feel less stressed and anxious in the office space thus bolstering my productivity
    • as my sensory defensiveness will be greatly reduced

I realised that this is an exceptional request and one that would not normally be requested in line with our Flexible & Mobile Working scheme. ¬†However, if I did not have the physical requirement of a height-adjustable desk and personalised chair, I would be actively choosing to sit in the touch-point room as several of my colleagues do, especially on days that they wish to have less distraction for increased productivity. ¬†However, because I have a “partial” fixed desk (i.e. it becomes a hot desk for colleagues when I am working from home/on leave) and thus have belongings stored and the desk arranged how I wish to have it, it’s not practical for me to go sit in the touch-point as it is; I would be compromising my posture and exacerbating my ongoing back issues by sitting at an ill-suited desk station whilst trying to manage my sensory differences, and up until now, it’s been more practical for me to over-manage my sensory issues rather than compromise my back.

So, going through the bureaucratic rigmarole that I had to (it is a Local Authority after all), my request was granted and my desk was moved into the touch-point room yesterday. ¬†My colleague this morning said to me that she noticed that I appeared much calmer and happier already, even though it hadn’t been a full day yet, and that one of the new caseworkers in our team (who has only been here about three weeks) noticed the difference too. ¬†On the one hand, it makes me wonder how chronically wound-up I must have been beforehand (obviously I can’t see myself as other people see me), but I’m glad that sense was seen and I’m quite happy in this room now. ¬†I suppose I’m quite lucky that I work for the Special Educational Needs Team because, if anyone was going to understand my needs and request, it would be this team! ¬†I was prepared to go to the union if necessary, but I’m really glad that they saw sense and that this request was granted. ¬†Ultimately, what it boils down to is that I was asking to have access to a height-adjustable desk in one of the touch-point rooms – we already had the height-adjustable desk, so there was no need to buy one, so it just made sense to relocate this one. ¬†And this will still be available as a hot desk on days that I’m not in… whilst I’m not 100% keen on it, there is little that I can do about it and it was more or less an unspoken stipulation of the request being granted or not.

I’m on my own today, as it’s a Friday and there tend to be fewer people in the office anyway, so I’m treating myself by listening to my Manics playlist through Amazon Prime Music¬†through my laptop speakers! ¬†I’m such a rebel. ūüôā ¬†I already feel like I’ve gotten a lot of work done today because I’m not having to cope with managing the sensory overload on top of everything else. ¬†The only thing that would make this perfect is a weighted blanket on my lap… otherwise, I’m a very happy bunny right now. ¬†Hope you all have a lovely weekend. ūüôā

Debunking “Everyone is a little autistic.”

I know several people who have said, “Everyone is a little autistic” in one way, shape or form. ¬†Hell, even before I was self-aware of my own autism, I hold my hands up and say that I thought this too. ¬†I’m writing about it now because it’s recently come up in a conversation with a well-intentioned friend and despite my attempt at a tactful way of saying, “Actually, no…” I don’t think this person quite understood and it’s been bugging me a bit for the past few days. ¬†Because I am a non-confrontational person, I didn’t escalate it any further because I was off-guard and didn’t quite know how to appropriately argue the point.

In the video Things not to say to an autistic person¬†posted by BBC Three¬†(which I have recently re-shared on social media), the panel of autistic people give their thoughts on this statement (ellipses denote going to another panel member’s thoughts/opinion):

“So we’re taught in school we’ve got five senses. Wrong – we’ve got six. The sixth one being our Theory of Mind, the ability to understand everybody else’s thought processes… You don’t have that instinctive understanding… and we rely on people’s body language and they lie with their body language, and that just makes me angry… So if you have the ability to do that, please don’t ever say you could be a little bit autistic, because it really is… Yeah, just don’t, just stop.”

I have managed to mask my lack of Theory of Mind quite well. ¬†With hindsight, I think I ended up studying Psychology and Social Work because I wanted to understand how people thought and why people behaved the way they do. ¬†Because I had the personality traits of a typical first-born in being a “people-pleaser” and learning from observing and trial-and-error, I learned a set of social skills to be able to appear to anticipate the needs of others based on what I thought I would need in the same situation. ¬†In my email correspondence with Katherine Green after my first two appointments, she read the longest version of my questionnaire responses (because I sent the very long version, an abridged version and a mid-sized one restoring some of the more significant details I had taken out because I felt the abridged one was then too short) and noted that I wrote in everything that I thought was relevant, not really having awareness of what details were more important and which ones were not. ¬†Even with this pointed out to me, looking back through what I sent, I still couldn’t unpick how I could have made it more relevant… This probably extends to my difficulties with job interviews because I know what I think is important, but I don’t know and can’t easily anticipate what it is that the interviewer is looking for in my responses.

I believe that when people say “everyone is a little autistic”, they’re trying to say that we all have certain levels of quirkiness and find certain things easier or more difficult than others, but ultimately, that’s just being human. ¬†It then makes those who are autistic feel dismissed and their autism not being that big of a deal. ¬†I came across a post on this topic by another blogger and thought these few sentences illustrate it much better than I feel like I am at this precise moment:

The only way I know to communicate how dismissive it is to say something like ‚Äúwe are all a little autistic‚ÄĚ is to shift the whole idea into the context of some other disabilities:

‚ÄúSometimes I am looking for something and it‚Äôs right in front of me and I just kept missing it even when I was looking right at it. We‚Äôre all a little Blind, aren‚Äôt we?‚ÄĚ

…When you use someone else‚Äôs disability as an adjective for your quirks or otherwise reduce it to a one-dimensional descriptor,¬†you are making light of their entire life. And when you say everyone is a little bit autistic, you are trivializing what it actually means to be Autistic.¬†~¬†Unstrange Mind

So, while I recognise that I’m still coming to grips with this new aspect of my personal identity, this is one subject that I felt needed addressing separately. ¬†For more on this, please do check out Unstrange Mind’s post (link above in quote box) because they explain it far more articulately than I can.


Funny how much difference a few days (and an undoubtedly life-changing diagnosis) can make to one’s humdrum life.

Last night, I spent more time sorting out this blog and my new Facebook page in one sitting than probably the last two months combined. I didn’t get to bed until after Paul got home from his gig, despite me saying to him that I’d likely be zonked out asleep before he got home… So imagine his surprise to see me still awake at 01:30!!

And even during the night, I was having all sorts of happy dreams about making positive connections within this community with women who I’ve silently been admiring from the sidelines, too scared to reach out to until I had my official diagnosis (for fear of rejection – see my last blog here). And I woke up feeling happy for the first time in a very, very long time. I can’t remember the last time I woke up feeling this unburdened… I am starting to think I’ve never felt this way before (without trying to sound too full of myself). ¬†You can certainly expect more writing from me now that I have emerged from this dark cloud of uncertainty and am now standing in the glorious sunshine of confirmation and validation.

And even looking through my news feed on Facebook (as I was waiting for Paul to awaken), I came across an amazing blog post written earlier today that I could have written myself verbatim, even down to the “growing up in a very small country town” and using the phrase I have been using for the past year and a bit – “this is my truth”. I feel overjoyed to connect with these like-minded Aspie women… I feel like I belong.

This is my truth, my perspective. My life. Your story might be completely different and that is okay! We are all different with the same Autistic core. I‚Äôm sure I will have days where I hate my Autism, I will fall back into the trap of being miserable about my past I cannot change ‚Äď this is realistic. Today, however, I‚Äôm simply just glad I know now.

Source: The power of diagnosis as an adult.

1 year, 1 month and 24 days later…

…I walk into the clinic’s group room with my dad, my husband and meet the psychiatrist and the speech & language therapist (from my first two appointments). ¬†The time is 10:00am. ¬†We break the ice talking about tea before getting down to business. ¬†We talk… a lot. ¬†I cry… a fair bit. ¬†My dad speaks… I speak… Paul doesn’t say too much, but what he says is helpful and relevant. ¬†Hours pass. ¬†Around 13:30 (at an estimate, because I wasn’t actively looking at my watch), the psychiatrist said that she was still unsure about me. ¬†She felt that we had to address “the elephant in the room” before proceeding with the discussion about whether I am autistic or not – the underlying and apparent feelings of rejection I possess which run very deep.

The rejection primarily stems from my mother, which really is unsurprising; it’s just that I’ve just not had it reflected back to me in that way before. ¬†I could sense the shift in her attention from the age of four and a half when my brother was born. ¬†I could sense that she didn’t want me “in the way” when my brother was having his speech therapy sessions (with her best friend) and his occupational therapy sessions (because he had balance & coordination difficulties). ¬†I could sense her pushing me away after I reconciled with my dad because I didn’t tell her straight away in case we fell out again (despite it being none of her business) because she thought we were conspiring against her somehow (ridiculous, I know). ¬†I knew she had “wiped her hands clean of me” on 13th July 2008 when the last phone call I had with her concluded with her saying, “Have a nice life” before hanging up the phone to me indefinitely (still haven’t spoken with her since).

The second stem of rejection came around the end of high school. ¬†I don’t think I could cope with the prospect of my school routine being thrown completely into turmoil by graduating and going to university. ¬†I think I felt like my circle of friends were more ready to move on than I was. ¬†I am obviously looking back on events that occurred over 14 years ago, so I can only guess what I was actually feeling at the time because a) I can’t completely remember and b) I don’t think I even knew at that time. ¬†In order to feel some semblance of control, I felt like I needed to distance myself from my friends, completely cutting myself off from them. ¬†I did not attend anyone’s graduation party and I did not have one of my own. ¬†When my friends came round to try to talk to me to find out what was wrong, I refused to go out and speak to them. ¬†I didn’t know what to say or how to face them. ¬†I was hurting, I was embarrassed, I was confused. ¬†I wanted to apologise but I didn’t know how or what to say.

The third stem of rejection was losing my job just after returning from our honeymoon. ¬†In brief, I interviewed for a career enhancing position with an independent fostering agency after I had about three years of experience as a Local Authority social worker. ¬†They briefly threw the word “recruitment” (of new foster carers) into the interview, and because I wanted the job, I said that I’d be open to learning about how to do it. ¬†After I started, it became apparent that despite my job title officially being “Supervising Social Worker” my actual role was to go out and recruit my own caseload of new foster carers. ¬†For someone without additional (and at the time unknown) difficulties, this would seem a steep request. ¬†Counting from the day I started (1st December 2011) to the day they fired me (15th February 2012), a week and a half after I returned from getting married and having our honeymoon (15 working days off), I had actually worked for them for 36 actual days. ¬†How in the hell was I supposed to recruit ten new sets of foster carers in 36 working days where the Christmas period was smack in the middle of it all?? ¬†I think it boiled down to a personality conflict with my line manager, who was on one day nice as anything, and the next day could be extremely unapproachable. ¬†I didn’t like her approach and she didn’t give me any sort of actual support in doing the recruitment, even after I asked for help¬†because she expected me to “use my initiative” but that’s very hard to do when you don’t even know where to start. ¬†I’d spend 8 hours sat behind a table with leaflets on it and a pull-out standing poster behind me in a supermarket foyer, hoping somebody would come and talk to me (as I could not badger customers coming in or going out of the store). ¬†It was hell. ¬†It was demeaning. ¬†It was embarrassing. ¬†I’m glad I didn’t end up being there very long, but I’m painfully embarrassed to the pit of my stomach about being fired from there. ¬†I had never failed at anything so severely before in my life and I wanted to die. ¬†I was miserable for weeks and struggled to find long-term work after that. ¬†After several short stint jobs (teaching assistant, outreach worker, SEN Casework Officer for three months), I finally landed the fixed-term contract with the authority just south of where I live and was there for ten months before landing the post I’ve been in for two years (as of the 1st of August). ¬†I don’t talk about this period of my life much because it caused me so much turmoil and grief. ¬†Not long after losing that job, Paul and I were faced with having to move out of the annexe and move into the house Paul grew up in, with his mother. ¬†The plan had always been for this house to eventually become ours, but we were newly married, I was newly unemployed and had been faced with the biggest rejection I had personally felt in my young adult life. ¬†While one could argue that the rejection from my mother would be more hurtful, she had been gradually rejecting me throughout my life, whereas the job rejection was far more personal and felt much more traumatic. ¬†I think this experience has also reinforced my feelings of being unable to work at a higher level where I’d be managing people… I could not bear the responsibility of causing anyone else that kind of pain.

The psychiatrist said she would not be doing her job properly if she did not address this with me, which I understood and thanked her for because this will ultimately help me be more mindful and recognise things more readily when I find myself feeling down. ¬†Thankfully, she explained how she didn’t think the rejection exclusively explained all my other difficulties. ¬†The other element that stumped them was my ability to read and anticipate from others’ facial expressions, body language, and vocal tones. ¬†I explained that I did train in graduate school to be a social worker who did counselling, as well as studying psychology in undergrad, so it’s hard to say if this is a natural ability or if I have just learned and retained this because of my level of intelligence.

They both said that having read through my information (the many, many pages of it) and speaking with me, there were definite moments where they felt it was clear that I was autistic, but then I’d do something unexpected and sway them back to thinking I wasn’t. ¬†They explained how they have seen many women over time, some blatantly obvious and others who have learned how to mask and cope so well, and that I’m probably at the highest functioning end that they’ve seen – they joked that they’ll need time in a dark room to recuperate from this diagnostic process!! – but that they felt that it would be beneficial for me and my mental health to have a diagnosis at this time, and that if in the future (whether it be the upcoming weeks, months or years) I chose to not disclose it to people or not recognise it in myself anymore, then that would be my choice. ¬†However, I don’t think that is likely to happen, considering that since I had my “moment of clarity” at the Birmingham Autism Show on the 19th of July 2015, I’ve gone through 420 days (or 1 year, 1 month and 24 days) of wondering and seeking validation… and at 14:30 yesterday afternoon, I walked out of that clinic with a smile on my face and a feeling like a massive weight had been lifted off my shoulders. ¬†I walked out into the sunshine with the diagnosis of autism that I had been hoping for. ¬†I feel like while the journey to validation has come to an end, my new journey has just begun: to continue sharing my story, to continue sharing information, to continue adding more to the collective voice of women around the world with autism who may not yet know it or do know it and need help being believed. ¬†We all know our own truths. ¬†This is my truth… tell me yours.

One Hurdle Overcome… One More Left?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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