Ten Years On - my diagnosis anniversary pt1

Time is a funny thing, I've written before about the passing of time and how it brings forward an odd sense of curiosity and anxiety.

When considering the events of the past decade I'm almost overwhelmed by the sheer volume of memories and emotional attachments to things I barely spare a moments notice to normally.  I find that as I reflect on the ten years that I have lived since my diagnosis in 2009 I almost can't recognise the person I was then, so much has changed. And yet so little has really, core personality and values haven't altered in any fundamental way, just matured and shifted with my growing understanding of the world around me and the solidifying goal of the person I want to be.

My journey to diagnosis was not nearly as long or difficult as a lot of other women's, I was very lucky to be supported so well by my incredible family and have a solid network of friends at the time (to my sorrow these haven't lasted the trials of adulthood and geography). But that doesn't mean it was simple. My journey technically started at 15, got kneecapped at 17 and took until a soul-searching holiday at 20 to recover and start the nearly 2 year process to finally see those immortal words in print "I believe that she does meet the formal diagnostic criteria for an Autistic Disorder" - it's slightly clunky medical terminology but it was from a clinical psychologist and that was what was needed!

I remember vividly the days leading up to the appointment- the terror that clutched at me over not being believed, being called a liar or attention seeking as I had been so many times in childhood. I desperately wanted the validation of the diagnosis (I'm still at scientist at heart and want empirical evidence to support any theory!) but the overwhelming feeling on entering the assessment room was pure fear.

I don't recall much after that. My mother has told me some of what happened as she was in the room with me answering questions about my childhood and reactions to things. I'm told my responses and actions where that of someone trying to hide - curling myself into my chair in an almost foetal position, turning my head away from them and getting very lost in my memories, there were so many that I had buried away. It also took a lot of work from the psychologist to get me to drop my mask and start responding as I would instinctively instead of as I had trained myself to, so many years of masking had made it such an ingrained habit that I was struggling to not edit my responses even though I knew that I needed to show this professional the raw real me if she was going to diagnose me properly.

After the 3 hour appointment was over we travelled the 15 miles home and I went to bed. And stayed there for the next 3 days basically!

Because that was how long I needed in isolation, away from any responsibilities or external inputs to rebuild my walls and shore up my defenses again.

And that’s what I continue to do ten years on, rebuild my defences after a difficult experience in the peace and safety of my own space. Because if there is one thing I’ve learnt over the past ten years, it’s that I need that time to recover and get back to my baselines; if I don’t go through a proper recovery protocol after a negative experience then the damage will build, resulting in a fairly catastrophic breakdown that can take days to even begin to recover from.

But it’s not just negative experiences that need recovering from! Social Hangovers are a part of my life I’ve become used to but they, along with general Autism Fatigue, can still have a large impact on the capacity for me to function in the days following. I’ve learnt over the decade to adapt my expectations of events and how long I can be at them, as well as working out key exit strategies and having different recovery plans based on the type of event in question (ie a night out at a pub will involve a more quiet and sensory plain recovery where as a busy family day event may lead to sensory seeking the next day with a large dose of free flowing rudely-honest commentary aimed at the TV as a result of having had to keep my speech family-friendly all day!)

Its been a long ten years looking back at everything that has happened, both in personal terms and the wider globe! But the more I reflect on what has changed the more I become hopeful for what still has the potential to change, what our world might yet become.

Everything I have learnt over the past ten years can effectively be summed up by two things;

my beloved Saracens values:

"Work Rate, Humility, Discipline, Honesty" 

and my favourite Henry Fraser quote:

"Always look at what you can do"

I'm going to keep working hard but be disciplined with the energy I have, keep being honest about my limitations and have humility about my achievements, and no matter what keep focusing on what I can do, even if today I'm struggling.

After all, who knows what the next ten years hold?!?!

Sarries in Philly!!!!!

There was a lot said about this fixture when it was first announced, mostly negative and critical. And yes, the crowd was a bit thin on the ground and the boys had to work incredibly hard in the humid heat of Pennsylvania but that's not the core of this fixture.

The heart of what the Premiership were trying to do was, in my opinion, achieved.

I spent time before the match with Sarries fans from New York and Virginia Beach, with Newcastle fans who'd struggled with JFK C&I even worse than me, with life long rugby fans and relatively new ones.

I was lucky enough to be in contact with BT Sport this weekend, and thus got asked to be a part of the pre-game filming with Sarra Elgan. She made sure to speak to two of the USA based Sarries fans who were with us before the 'lone' Falcon in the group (he wasn't, just the only one willing and around to be filmed!) and then lil ole me! 

I'd already talked to Sarra earlier in the day when we'd encountered her at the famous Rocky steps by the Philadelphia Museum of Art and had had the chance to have a decent chat with the BT Sport team and even a quick photo with ref JP Doyle when he randomly appeared!

Consequently I found myself kinda becoming the face of Sarries support in Philly - even more so when the Saracens social media team got me to do a good luck message to the boys on Instagram because Paul told them I could "talk for England"!!

I'm happy to do these things though because it's a subject I'm comfortable with, my public speaking reputation is good because I know the topics I talk about - autism, Saracens, space, physics, maths, working in a school, PRUs, all that is in my comfort zone. Ask me to talk about anything else and, well, it may not be pretty!

Back to the topic at hand now!

The match itself was not what you'd call the epitome of English rugby but it was very hot, bright, slippery ball conditions as the sun was setting across the stadium, and to be perfectly honest you're never gonna get the gold standard match in round 3! Maybe the next stage for the great American conversion is to get live showings of the ECC games and play-off matches going in big stadiums, sending a retired player or two over to do Q&As pre game.

My weekend wasn't just about the match though! I've detailed my Friday nightmare in this post: http://hjellis.blogspot.co.uk/2017/09/how-many-ways-can-one-journey-go-wrong but once on Philly my attention shifted from my complaining to having a great time in a new and exciting city!

Friday night was spent at the Hard Rock Cafe in my new Wal-Mart dress whilst Saturday morning was taken up with lots of laughter and photographs at the Rocky steps - particularly once Flats got there and had to don a fleece lined tracksuit to copy Sly's famous scenes!

We chose to head to the stadium really early as we wanted to witness the American phenomenon of "tailgating" - an interesting experience I must say!

We covered the car with Sarries flags to let everyone know who we were (Champions of Europe, we know who we are!) and waited to see who showed up. We knew of at least 3 groups headed our way, one of whom pitched up a gazebo so we quickly transferred the flags to the sides and made it Camp Sarries!

The next hour or so was spent sharing drinks and swapping stories of how we started following Saracens along with some interesting tales from the US Navy! We were joined by some Falcons fans and I had some sympathetic ears to my tale of horror and woe from my journey out as they had missed a connection at JFK thanks to the ridiculous chaos that is US Customs & Immigration!!

We were invited to join the BT crew again and so wandered over to the fan zone they were setting up, where I got to have my 5 minutes of fame on camera! (And then get inundated with notifications going "was that you?" "You were on my TV!")

Heading in to the stadium it was a strange place that distinctly reminded us of several prem stadiums, predominately the AJ Bell and the Stoop to me.

The merchandise shop showcased just what some of us are crying out for Sarries to do - women's jewellery!! I picked up one of the official match day t-shirts as a souvenir but was disappointed not to find any of the 'America Series' rugby balls that had been used in the online advertising. We did however manage to find pins which kept Adam happy!

I also struggled with finding a drink that wasn't a soft drink or beer! Having had 2 bottles of peach cider courtesy of our naval friend I was in the mood for another drink. It took a complete circuit of the stadium to find the one bar that did a bottled cider - no wine or spirits options anywhere!! And even then I was given my bottle of cider poured into a massive larger-than-a-pint plastic glass that every time I drank from took up my entire face so I couldn't see anything!!

During the match it was a bizarrely quiet experience, I've grown used to the Sarries fans getting the chants going and there not being many of us meant anything we tried starting never really went anywhere which was a bit embarrassing!

The second half of the game saw several of the non-playing squad wander past us up the steps to their box area, Loz seemed positive about his shoulder injury when I asked him how it was doing which is good! There were some moments of Sarries brilliance showing through, I nearly killed my vocal chords screaming for Wiggy when he went sprinting towards the try line at one point!

Towards the end of the game I head over to the guys to see if they would be willing to have a quick photo with us and the flags, seeing as we had travelled rather a long way to support the club!! At this point the lovely Duncan Taylor was an absolute gent and got the others to hold fire for a few minutes on the final whistle to let us get a few snaps off quickly before they 'll hurtled down to the changing rooms for the tiki tonga session!

Sadly the game had been so hot, humid and exhausting that the lads only briefly waved and applauded the crowd on their quick circuit of the pitch, leaving me fairly deflated and my mind crashing back to that dark place I'd been in after the Edinburgh game in May.

We got out of the stadium fairly quickly after we realised they weren't going to be around any time soon due to PR commitments and probably a vast need for ice baths and physio treatments! Heading back to the hotel fairly knackered and finally reunited with a phone charger I was taken aback when the humid heat very suddenly gave way to a torrential downpour, the likes of which I've only ever seen once in Florida!

Getting back to the hotel I couldn't actually get out my side of the car due to the mini lake forming and had to slide over out the other door instead, suddenly encountering the strangest of sensations - hot rain! The air was still so warm and yet the water was pouring down at a rate of knots!! Very bizarre to an English girl used to rain meaning grey miserableness!

The return to the hotel also brought the unwelcome news that my suitcase hadn't shown up and so a call to the lost baggage number was needed in order to discover that it was in New York and should be getting to me that evening.

After a few hours of unwinding, dreading all the social media messages I'd received about my starring role and generally sorting out plans for the next day I headed off to bed via a quick check with downstairs that my bag still hadn't arrived.

The next morning dawned cooler and grey than before and there was a distinct feeling of dread in my stomach as I woke. Checking my Virgin Atlantic app to confirm when I needed to be at the airport I was horrified to see that my flight home was no longer what I had expected to see!

The flights I'd been booked on for months going home via JFK were no longer there and suddenly I was being flown home via Atlanta Georgia with Delta the whole way getting to Heathrow at 11am!!!

What the hell!!!

A frantic call to Virgin discovered that Delta had inexplicably changed my flights for me and just hadn't bothered to let me know! In tears and furious I demand it be changed back only to be told that my flight to Heathrow was now fully booked!! So in the 48hours between me last checking my homeward bound flight and that morning they'd sold on my seat!!!

I was beyond furious and internally panicking like a man at the gallows, how the hell was I getting home?!? I didnt want to go via Georgia, i barely wanted to go via JFK but had accepted it as a forgone conclusion. The last thing I wanted was more changes, more crap moving me about! I was supposed to go straight to work from landing at Heathrow which is why I'd picked at flight landing at 8am!!

Well, actually originally I'd picked one landing at 7.20am only for Delta to move the first flight later meaning I wouldn't have enough of a connecting time so I'd had to call Virgin back in July to switch to a slightly later departure. And now the bastards at Delta had changed things again!

Eventually we managed to get me on to a flight leaving JFK at 9.30pm, due to get to London around 9.30am. Okay, sorted. Now to find out where the hell my suitcase was!

It turns out it was still (this is Sunday 8am) in frigging JFK having gotten waylaid in customs and missed the last flight on Saturday!! So now my choice was to either ask for it to be returned to London and buy a new hold bag to put all my newly purchased items into to come home or to travel to the airport after 11am to collect it from there in person as there was now no time for it to be delivered to the hotel and me to pack it before we had to check out at 1pm!! I told them to hold it at Philly airport and we would come collect it before midday.

Flights and luggage now sorted we had breakfast and then got on the road to go see the Liberty Bell. It wasn't something that particularly interested me, I look on the independence stuff as historical proof of treason against the crown by a bunch of rebels but that's just me!

We spent some time wandering around the area and I found a way to spend some money in the Liberty hall shop - only I could go all the way to America to their most historical sites and come back with a glitter timer and a maths pendant!

Still, I did have a good laugh at this sign on one of the walls - I've found things older than that in my garden at home!!

A quick visit to the airport to collect my suitcase and we were back to the hotel to change and pack up. I could finally wear one of the outfits I had packed for the trip as everything else got thrown in and locked up again ready to go back to the airport!!

Dennys was our lunch stop choice and it was an interesting experience although I am very glad I went for the big meal of steak and mash given what was to come still!

I got dropped at the airport just after 2pm by the Feaseys as they were off to the British Airways terminal for international departure as they had just the one flight home, where as I was on an internal to JFK where I had a 3hr layover waiting for me!

The check in for my Delta flight threw up an unexpected problem however as their system was still showing me as on the Atlanta bound flight!! Another call to Virgin and handing my phone over to the Delta staff and eventually I got my boarding passes for the right flights!

Suitcase was now back out of my hands less than 4 hours after I'd been reunited with it and I was through security and sat at the gates bored.

Really really bored.

After all the stress and problems last time I'd given myself so much slack time that I was now left with over 90mins to my flight departure and nothing to do! I managed to waste a fair amount of time by finding a charge point and hooking my phone in before calling my mum and then my dad for long chats about the match but that would only work for this wait, by the time I got to JFK they would all be in bed.

The flight to New York was uneventful really, apart from being unexpectedly placed on an exit row! When we landed there was a delay with getting the connecting gate bridge thing to us and I joked to my neighbour that we were spending more time in the plane on the ground at JFK than we did in the air! He was headed for a Heathrow flight to as he was taking a trip to the UK so I shared some suggestions with him of historical sites to visit while there which he seemed to appreciate.

Finally off the plane I found myself at the gate for my next flight in about 30 minutes as there was no security to go through! Now I could see that the flight was already saying a 10pm departure so I had even longer to wait!

And this is where my luck changed.

Wandering around the gate area for the London departing flights who should I see in front of me but one Chris Wyles!

Oh my God, the team are here to fly home!!!

I couldn't believe it, suddenly I'm seeing and saying hi to guys like Wyles, Ben Spencer, Sean Maitland! I even had a brief chat with Sean saying how I thought it's unfair that he doesn't get the try to his tally as JP gave the penalty try because he could see Sean was clearly going to score when the illegal move was made! He agreed and told me he'd been screaming at Goodey to get it to him as he could see he could score it!

I had thought I was going to be so lonely and bored but instead I got this amazing gift of being able to casually spend some time with my favourite people!!

I didn't take any pictures that evening, I made a concious choice to not be a selfie fan who hassled them at that stage but to just talk to them for as long as they let me. Any time one of them said "take care" or "see you later" I would wander off again and leave that person alone. I think one or two of them found it bizarre and I know that a few found it amusing, I was outrightly saying that I was on my own and starved for conversation so was desperate just to see familiar faces! It was quite nice though when some of those faces recognised me back, I'd had a great conversation with Wiggy and his missus at the Bedford game so he recognised me as we chatted briefly, Brad also recognised me from holding the flag up at the end of the game, even saying sorry for not coming over but he was too sore to try to jump the electronics barrier the stadium had separating us from the pitch!

One of the best moments of my whole weekend came though when I saw Billy walking towards me. I asked him directly why he couldn't have released his new book in time for me to read on the flight to which he replied that he thought it was already out!!! No Bill, it's on sale next week! Then, the legend that he is goes and finds me one from one of the lads as they've all been given a copy!! I have Billy's book and it was given to me by the man himself!!!

I was so happy with this and even more so when some of the other players saw me carrying it and struck up conversation about it with me!! George Kruis even joked that it wouldn't take me long to read as it was in big font! Maro was also interested in it when I asked to shake his hand, as I told him, I didn't want to hassle any of them but I'd been trying to shake his hand for well over a year now with little success due to the massive crowds everywhere he goes!!

Maro was an absolute gentleman and had a wry, slightly embarrassed smile when I said that but was really chilled out about me being there talking to him and the others. Most of the team had started filtering through the gate by this point as their flight left ages before mine (Wiggy and Sean had both asked if I was on their flight which I was a bit gutted to say no to!) I made the mistake of asking for "tries to win next week please" in jest to Wyles and Liam as they were going to board and ahead in the queue Owen suddenly turned around to look at me - I'm not sure if he was just surprised by a non-teammate voice or took offence to what I said - I didn't mean anything against him scoring points from penalties!!

Watching some of the huge guys like Will Skelton put flight socks on and line up for sleeping tablets from the harried Laura was amusing, Goodey seemed in an especially happy mood given the lengthy flight ahead!

The funniest moment though was right at the end, I had thought the whole squad had been through by that point and I'd just missed seeing a few, the staff were looking like they were moving to close when suddenly several of them appear armed with McDonald's!! Schalla seemed to recognise me immediately as he sat down with his meal, joking away about the queue for food and laughing when I asked if they hadn't used the "don't you know who I am?" move! Apparently that barely works in England for our rugby boys!! The guys suddenly seemed to realise they were holding up the flight leaving when a staff member came to tell them that they could take their food on board if they wanted to! That didn't stop Schalla trying to give away his fries to the cleaner/me/the gate staff however!!!

As their gate finally closed and that flight departed I was left alone again but with rich, treasured memories of the past hour.

Unfortunately by this point it was far too late to call anyone in England to share them with!! A few dashed off tweets expressing my gratitude to the team before I turned my attention to Billy's book! It kept me entertained for quite a while before restlessness got to me and I had to start wandering again. Annoyingly my flight was now saying it was delayed again, with boarding not due to start until 9.45pm! I was getting rather frustrated at this point, especially as the main reason I wasn't on the team's flight was because I'd been told back in July that I wouldn't have enough time between the flights to make it . . . I clearly would have had plenty!!!!!

Eventually we boarded and then taxied. And taxied. And taxied. Just after 11pm we finally took off and left America!!

I had hoped for a good flight that I could sleep on seeing as I was going straight to work but no. I had a guy in front put his chair back straight away leaving me with restricted room, the guy next to me immediately put in earplugs/eye mask/blanket and go to sleep so I couldn't get out at all and two rows back in the aisle a screaming baby!!

By 9am BST, when I should have started work, when I would have been clearing Heathrow baggage claim originally I was still 617miles from landing and really rather grouchy!!

Still, as the rather stressful trip drew to a close I can look back on some incredible memories and, once my various complaints have been made and settled, forget all about the crap that happened and just remember that I was there and no-one can every take that away from me.

#SarriesStateside
#SarriesInPhilly🇺🇸🖤❤

How many ways can one journey go wrong?!?!

I dont know what deity I pissed off recently to deserve a day like today!

My day started smoothly, I woke in the Park Inn hotel near Heathrow where I'd checked in last night, the room was an upgrade to the one of reserved (yay) but seemed to have the remnants of someone's coffee in it (boo). Still I'd had food (at the bar as the restaurant had a 45min wait for a table for one!) and had a lovely bath before painting my nails the Sarries colours and finalising what was in suitcase or hand luggage.

I'd missed a hotel hoppa bus by a minute due to the check out desk being busy but I thought with over 2 hours to departure I would be fine.

I'd tried the night before to check in using the Virgin Atlantic app on my phone but had failed so I needed to check in at the main desks, this didn't really bother me until the kiosk rejected my check in and told me to speak to someone.

That someone then typed in my details, got a confused look and took me over to the customer service helpdesk where things got, uh, difficult.

It's turns out that despite lengthy conversations with Virgin Atlantic over the past 4 months (since I changed my flight from an L.A. holiday to this trip to Philly) including one as recently as this week via their websites 'chat' function about using my airmiles to fly home premium economy (they told me there was no availability) no-one mentioned that there was an outstanding balance to pay still!!

Now, bare in mind that I had booked these flights by phone in May, at the time I called to change my reservations I distinctly remember being told a figure (the different in flight prices plus and admin fee) and giving the person my card details!!

And yet I'm standing in Heathrow with my flight leaving in less than 2hours being told my ticket won't print as I haven't paid for all of it!!

I was not happy. In fact I very nearly tumbled straight into a panic induced meltdown on the spot!

I stammered about having paid at the time but in the end just handed over my card knowing that the only way I was getting to America today was to pay and argue for a refund later when I can get a May bank statement.

Of course this brought the usual panic around whether my card would go through! Even knowing I had enough in the account I still really sorry with large amounts and get super nervous that it will reject if my bank thinks it's fraud!

So, card handed over should be end of story right?

No

The lady on the desk was coordinating the problem with another member of the Virgin team off site somewhere (their HQ I think) and was being put on hold constantly, told to cancel things she had done until they'd done something, I got very confused and distressed at this point so don't remember clearly.

What I do remember is looking at the clock constantly with the lovely first lady reassuring me that there was plenty of time. By 7.55am I could see she was starting to worry about making my 9.05 flight though. She very helpfully went to get me a glass of water to take a painkiller with as I'd ditched my liquids already!

Bag drop was due to close at 8.10am. The clock kept ticking as this hold music played . . .

Eventually the person on the line gave the go ahead for me tickets to be printed and the lovely desk lady did them as quickly as possible for me, printing at 8.12!

A dash to bag drop then with the first lady, she'd called over to a colleague to not close my flight for me! I then left my suitcase sat next to a check in desk with 2 others and some Heathrow staff who were to take them to my flight as late arrivals authorised to go on.

I was then hurried through to the First Class security where I said goodbye to the wonderful woman who'd been with me for almost an hour at this point, having got me through security in less than 5 minutes!

A quick march to the already open gate with no time to stop to have breakfast, use the ladies or even buy a bottle of water and I was in a queue to board!!

The staff on the flight could not have been nicer to me! They spotted my obvious distress (I'd been crying for close to 45 minutes on and off) and when I told them I'm autistic they just asked what I needed - I replied a drink to which they asked what I wanted!

After that the main staff member for my section in economy (a lady called Jemma) came over to say hi and have a chat before take-off. We discussed the mornings events and how I was still fairly shaky at this point but that I loved flying so was hoping to be okay soon.

By this point boarding had finished and the doors were locked . . . No-one was sat next to me!!! The day is looking up!!

The flight itself was lovely, the first staff member I spoke to brought me my vodka cranberry almost immediately and I started to settle down.

6 hours of in-flight wi-fi goodness later and I was starting to get nervous again though.

I had to change to a connecting flight at JFK, something I'd never done before, as Virgin don't fly to Philadelphia direct. Jemma again was brilliant in reassuring me and talking through what I would have to do once off the plane, she even offered to get some of the ground staff to meet me and guide me through.

Getting off the plane (and leaving my iPad in the seat pocket as I would realise hours later!) I was a bit nervous, being at the back of the plane is great for my wing watching habit but not so good for a speedy exit on disembarking!!

Eventually I got off the plane but discovered that the ground staff were not nearly as helpful as Jemma was, she tried to get the "assist" staff to help me but was told they "only do wheelchairs" and wouldn't help me. After a few minutes I decided to just give up and thanked Jemma for her efforts saying I was going to give it a go by myself.

Well, Jemma had said to follow certain signs as I had a connecting flight in under 2 hours but when I got to the C&I hall is was utter chaos!

I tried to ask staff members for help but they were so ridiculously unhelpful! On man I asked for help just told me to "go elsewhere"!

Eventually I figured out the machines system and then had to join a long snaking queue that was merging with queues of people trying to use the machines! I end up stood for ages near a family with a toddler and a baby, both of whom were being rather grizzly.

As we slowly shuffled about I got to a point where I could see a staff member manning the queue. I tried to speak to him to ask the estimated time to get through but ended up catching the attention if a female staff member instead.

By this point I was very stress and on the verge of tears and close to losing my words completely.

I tried to ask her what the chances of me making my flight we're, holding my boarding pass to display the boarding/departure times as I was getting so flustered.

I was met with a distinctly snide "ma'am if you want me to help you jump the queue then get that boarding pass outta my face"

I tried to say I wasn't asking to jump just for a time approximation and that I was autistic. She turned her back on me, opened the tape and pointed me to a queue at  customs kiosk saying "go"

So I joined that queue, now with tears trickling and my stress scratching moving from my arms to my upper chest/neck.

I was then joined almost immediately by the bloody family with the young kids who stood behind me talking in their language (one of the Slavic languages I think) while the baby did that half-whimper, half-cry thing.

I was sensory flinching every few minutes at this point and whispering to myself to stay calm and not react but it was getting harder and harder.

Over an hour after getting off the plane and having skipped huge chunks of queues, I was next in line for the customs officer. The lady at the desk completed her business and moved through but the officer was typing on his computer so I didn't move. I felt a nudge in my back. I didn't move. I've been shouted at by American officers before for moving forward before called! The officer then looked up and beckoned me forward so I went.

At his desk he was fairly sunny and pleasant but he made the mistake of asking me if I was okay and the flood gates opened then and soon I was crying nearly uncontrollably as I explained my flight was already boarding!

He got me to redo the fingerprints and photo as the machine I used hadn't registered them properly so my C&I official entry to the country photo has tears rolling down my cheeks!!

He quickly processed me and told me where to go to collect my baggage. In the USA all baggage must be collected at your first entry point and re-checked for the connecting flight which to me seems insane, my ticket is for the whole journey so why doesn't my luggage just go the whole way before I get it back?!?!

So I went to the conveyor belt my flight was coming out of, there was huge amounts of baggage everywhere, stacks of it on the floors between the belts and the one I was at had two flights on it, mine and another.

After close to 15 minutes of waiting and watching the luggage come down and join the belt I asked a staff member who was pulling bags off the belt to stack on the floor. He told me that all the Heathrow bags were off the belt now and on the floor the other side - between 5 and 6, not 6 and 7 where I'd been checking!!

Going round I scanned the bags left. No bag. I check with another staff member, that's all of them she said, if it's not there then it wasn't on the plane.

Great. I now had to run to my next flight with no suitcase!

Getting to the Delta desk to check in for my next flight I was told to hurry as it was boarding and wouldn't wait.

Struggling to rush after 7 hours on a flight and with my dodgy back I walked as briskly as I could to security where luckily (as I asked a staff member there about my chances of making the flight) I was queue skipped again right to the x-ray machines/body scanner.

Of course I'd had no time to sort my hand luggage again so it was a scramble to get my liquids back into a bag and separated from my hand luggage bag before I joined the metal detector queue.

I was then told to take my flip flops off. Now London and most Europe airports have for a long time now said you only have to remove shoes at security if they are closed shoes (trainers/boots/loafers etc) not flip flops. But not JFK. No so I had to go back, grab another tray and throw my flip flops in and then join a queue again that was being held up by a deeply stupid/confused old man who kept setting off the metal detector as he had all sorts of crap still in his pockets!

Finally through and reunited with my things (in such a rush I wasn't registering there was no iPad anywhere) I shoved my feet back into the flipflops and set off as quickly as I could go to gate B42. Of course, as at Heathrow it was a gate pretty much as far from security as possible!!

I tried to go fast but a lower back spasm and shin splints slowed me down so much. I walked as quickly as possible and literally made it to the gate as the staff member was announcing "final call for passenger Ellis"!

On to the plane I had a bit of a shock - it was tiny!! I'd just come off a huge transatlantic flight to to get on to a plane that had 75 seats max was a bit 'woah!'

I changed my seat as I was due to sit next to someone but didn't see the point of making them move to let me in when there were so many free rows as the plane was 1/3rd full!

Well, I knew it would be a short flight but we were in the air less than 40 minutes by my estimation!!

The attendant actually said she thinks we were taxi-ing longer than we were flying!!

Finally at my destination I was united with the lovely Feasey family and got to spill my story and tears on to Sue's shoulder!

A trip to the Delta baggage collection desk followed with an explanation of the situation. Apparently my suitcase was still in London!

Now armed with the information that it would be delivered to my hotel the next day around lunchtime, we received a pack of 'essentials' and departed for the car, where Paul drove us to Wal-Mart for me to buy some clothes!!

I'm a pragmatic hand-luggage packer so had put my match outfit in my hand-luggage with 2 sets of contact lenses so I had all of that with me thankfully, but I was missing essentials like pyjamas and something to wear to go to dinner in that evening as I did not want to spend another minute in my flight outfit!

A $90 credit card payment later and I had a selection of clothes and toiletries to sort me out. The Delta essentials kit was nice but only had the basics - a razor, toothbrush and paste, a folding comb, stick deodorant and a thin white tshirt. I needed face wipes, a roll-on (I hate stick deodorant), some eye liner (all my make up was in my suitcase bar my sun cream stick and perfume) and a proper hairbrush!

Finally to the hotel I could have a shower and put on clean (new) clothes to go out to dinner, having first drunk nearly my body weight in water as I was so dehydrated and hungry! No time at either airport post security meant I hadn't been able to pick up snacks or bottled water anywhere and was only surviving because the transatlantic flight gave out drinks all through the flight!

It was a bit of a horrific day all told and I have lots of complaints and lost property procedures to follow now but I'm finally in Philadelphia!!!

#SarriesStateside
#SarriesInPhilly🇺🇸🖤❤

I'm autistic, what does that mean?

My 'Autism journey' started back in 2002 when I was a stubborn, hormonal, exam-stressed, self-centred 15 year old girl - which if you exchange 15 for 30 is still a pretty accurate description of me!

My mother had attended a course that featured Ros Blackman speaking about being an autistic female and a lot of things she had said were ringing true about our home life. So, over the next few weeks she put in place some of the suggested strategies for autistic people (at the time) and then broached the subject with me after I mentioned how much better things had been recently.

It took a long time for me to process the resulting conversation. At this point in my life my only reference points for Autism were the film Rain Man and the 'classic' autism of those in long-term institutions. My fear was huge, this was 2002, pre-Twitter and definitely pre the current availability of role models and positive messages.

Luckily for me I had been brought up by teachers, maths and science to be precise, so I dealt with the issue the same way I did anything I encountered that I didn't understand - my beloved set of encyclopaedias! Of course they didn't exactly have much in the way of comforting information there but I did end up learning a lot about the way the brain works and the chemistry of the body and briefly entertained the notion of becoming a neurologist . . .

Ultimately I forged my own path with understanding what the word 'autism' meant to me, I already had a lot of coping strategies and masking methods in place so continuing them on with conscious knowledge wasn't that difficult. Well, at that point in my life it wasn't. Between that conversation at 15 and going to my GP at 17 as far as I recall it was business as usual at home, which naturally mean lots of loud and emotionally charged rows, lots of stress at school, lots of mistakes and lots of spending time on my own - not always out of choice.

My biggest mistake came on the day of my GP appointment - I decided at the last minute to go alone and barred my mum from coming with me. To this day I cant remember my reasoning or why on earth I thought that would be a good idea.My GP (a lovely man that I hold no ill-will to) did exactly what any GP would do at that point when presented with an emotional, tongue-tied 17 year old girl - he asked me about school and home and concluded that it was just normal life, growing up and hormones and exam stress.

Of course I didn't take this very well but the reaction didn't come out until I was long left the surgery and so in no position to show him that he was wrong and that there was more to my problems than just the standard worries of a teenager.I avoided going back to the doctors for quite a while after that and quickly stopped mentioning to other people what we had self-diagnosed me as. Looking back there are moments I wish I had been diagnosed or on the referral pathway already by that point, times when teachers caused me problems or social situations got very difficult.

I remember one instance that still makes me burn with anger when I think of it - my A-level chemistry teacher had informed us before the Easter break that we needed to get our coursework to her before we came back to school for the Summer Term so she could mark them and send them off in time. Not a problem, she even gave us her home address to post them to over the holidays. In the final week of term she also mentioned that as the school had an INSET day on Friday we could go in to use the school space to finish off our coursework and hand it in then if we wanted to. I didn't want to, I already had plans with my family that day as we'd known we had an INSET day off that day for weeks. So I didn't go in, instead I laboured on with the coursework over the first week of the holiday (I really hated my project by that point!) and sent it off to her home address from my dad's house in the second week. When we returned to school for the Summer Term she pulled me aside at the end of our first Chem lesson to basically have a massive go at me. She very sarcastically and (in my opinion) nastily asked me why she had had to wait until the end of the holiday to complete her marking and assessment of the classes work when every other person in the class had come in on the INSET day to hand in their work then?! She concluded by stating that she was not happy with me and that she expected better - all of this in-front of the students who had filled in for the next lesson with her! To be honest it was probably only the fact that she was heavily pregnant saved her from my explosion of rage, instead I meekly turned and exited as fast as I could with my face burning with shame and ran for cover in the girls loos. I never confronted her about her inconsistency or way of handling the situation. I'm pretty sure she knew I hated her from that moment on as I'm not exactly a subtle person when angry but it was mostly passive aggressive and fairly pointless as we only had 6 weeks left before the exams by that time. But I still have a burning anger buried in my memories because of her, I still have a strong desire to verbally rip her to shreds in front of colleagues and family, I still wish to hear her grovel an apology to me for the way she made me feel like a piece of shit on her shoe that day.

As I've got older and have understood my emotional reactions to situations more I've gotten a better handle on how to process and respond to those sort of scenarios; I even practise them in my dreams! The sub-conscious mind is a phenomenal place and can process and figure out things so much more quickly than my waking mind can. In my dreams I'm still autistic, I still experience sensory overload and processing delay but I can 'hit pause' on things (well, in dreams anyway, nightmares are a totally different topic!) My dreams allow me to consider different ways I might react to things and how best to approach situations. I have dreamt of receiving the news of family members deaths, of being caught up in a terror attack, of being assaulted, of finding myself under arrest, of being fired, of pretty much any situation where my immediate reaction is going to need to be controlled and managed. I need to dream these scenarios so if, god forbid, they ever occur the freeze-shock hopefully wont be as powerful, wont be as debilitating, wont be as damaging.

I never like planning for the worst, I don't think I'm a naturally pessimistic person, but I do believe in the pragmatism of being prepared for all eventualities. Well, maybe not all, I haven't dream-rehearsed a zombie invasion or alien attack - Hollywood covers that well enough anyway! But the principle I adhere to is that I need to be able to predict my own reactions to things - how can I possibly hope to understand other peoples actions and reasonings if I cant work out my own?

I often think of Tony Attwood's wonderful phrase about autistic boys and girls where, to paraphrase, he states that while Asperger describe his boys as 'little professors' that autistic girls are more like 'little psychologists' - in short, we *want* to learn about other human beings, we *want* to understand this world we live in. I actually slightly disagree with Attwood in that I believe autistic females are 'little anthropologists' - we study the environment to learn from it, looking abstractly at why certain interactions happen but doing it in a range of ways, some of us immerse ourselves in the culture we are trying to learn from where as others maintain an observational distance.

I've always been fascinated with other people and with learning more about people in general. As a small child my obsession was my own fingers - the movement of the bones and muscles/tendons, the different ways they could be manipulated and move, how different peoples hands look to each other. As I grew my focus shifted more to peoples differences in general, I always notice height, skin tone, hair colour and type, face set and finger length in strangers. I'm not discriminatory in what I notice, I just mentally record it as a way of identifying an individual, taking note of how their hair reminds me of my Grandma or their hands look like a pianists or their torso is longer than my legs! Leg length is another thing that fascinates me, shaving my legs always takes forever because I inevitably become distracted by thoughts of how long my legs are and how did they ever get to be that length from the tiny baby legs I was born with! (and I've not exactly got long legs at only 5ft3" tall!)

At times I wonder if I should have used this keen interest to pursue a career in medicine or physiology. But I think my fascination with the human mind will always overrule my wonderings about how tendons make bones move. I *need* to understand why people think the way they do, why we interact in the social grouping manners we do, why we have desires for communities and social structures in our lives.

Being autistic gives me an added desire to learn about these things, I will never able to know what its like to not be autistic, to truly understand just how instinctive the understandings and reactions are to those who are not autistic.

When I went off to university aged 18 I was full of ideas and passions, I wanted to understand not people but the universe as a whole. My degree was Astrophysics, I wanted to become a theoretical physicist like Stephen Hawking, Galileo Galilei, James Clerk Maxwell, Robert Oppenheimer. I wanted to change the way we understood the world we exist in and learn more about *why* we exist.

This state of mind lasted until about halfway through my second year. By that point I'd immersed myself in the student union, learning through observation and casual interaction, finding out that it was (for me) the perfect way to test the waters of social activity, taking part in structured meetings and events before dipping into the more alcohol-based aspects of the post-meeting hitting the bar. I was surrounded by likeminded people who were passionate about helping others and doing things for the right (sometimes righteous!) reasons and more than anything they were accepting of me for who I was - quirks and all!

The more time I spent in this crazy bubble world that was, as a friend put it, 'Blue Peter on speed' I started to realise that my ideas for my future and career were starting to look very dull and miserable. Suddenly the idea of spending the next 40 years of my life in a lab with the same dozen people endlessly staring at numbers and fuzzy images seemed like the worst kind of hell. I'd not enjoyed much of my second year of studies anyway, my modules 'choices' were not exactly what I had wanted to study - the module of 'Multimedia Image Processing' (or something similar I've erased the knowledge from my memory!) was the beginning of the end for me. The module started with an introductory lecture, well, it should have done, instead what it started with was the professor going over the module aims and then launching into an overview of what we already knew. Except I didn't. I hadn't spent my teenage years playing computer games and fiddling with images and computer graphics and all that sort of thing, I literally understood the word pixel in the spiel he reeled off. So from day one I was massively behind my fellow peers and completely adrift in the module with no real desire to catch up as I found the subject mind-numbingly boring and not at all related to what I wanted to learn!

Things came to an apex in my mind whilst on a once-in-a-lifetime holiday with my mum and brother in Egypt. It was a place all three of us had wanted to go for years, an ancient civilisation we were fascinated with. Sitting on the top of the cruise boat on the River Nile looking out at miles of desert and historical temples and monuments I found myself realising the truth behind my feelings; I wanted to do something worthwhile with my life, something were I could affect other people's happiness in the here and now, not some abstract concept of improving human knowledge but a tangible legacy of impact on real people.

It was in this moment I also realised that I had truly come to terms with my identity as an autistic person and that I was ready to try again with the diagnosis process and commit to seeing it through to the end no matter what.

Those 10 days in the African sun were genuinely life-changing for me, I found a piece of myself that I hadn't known was missing and I started to put together a quantifiable image of my future. Within a few days of returning to university I had started the paperwork required to switch Faculties (virtually unheard of!) changing my degree from an MSc in Astrophysics to a BA in Social Policy! It would take a lot of work still and I had to restart right at Year One as my A-levels of Maths, Further Maths, Physics and Chemistry weren't exactly applicable to a sociology subject but I knew I was on the right track.

I was lucky in the respect that my parents had always taught me that it was okay to change your mind, that there was nothing wrong with admitting you had made a mistake. By giving me that upbringing they gifted me the skills to be able to take control of a life I was unhappy with and change it into one that had the potential for future happiness.

Now all I needed was that pesky diagnosis . . . .

[To Be Continued]

Autism Fatigue vs lots of exciting plans!

I've talked about the concept of Autism Fatigue before but it's never been more obvious to me than when I have a period of time like I'm currently in. I'm 9 days into a crazily busy 18 day stretch and already I've had to cancel 3 different plans out of the 18 things I've got in the diary (and that's not including the standard going to work next week!) I should note that I am incredibly lucky to have be given the opportunities I have and I am very grateful for the support of my university tutor, my family and the staff involved in the various work I've been contracted to recently.

I had to cancel certain things this past week because I was having to make choices between standing by plans I'd committed to and the need to protect my own health - mental and physical. It doesn't help that I'm still recovering from a nasty virus last week or that I've managed to pick up a cold along the way to join the fun. My point is that just because I want to do something doesn't mean I should; those decisions have to be made on a day by day basis and that unfortunately means letting people down at the last minute sometimes.

Most people have been fairly understanding recently, having a virus that's leaves you with dizzy spells and nausea is understandable to most people. Certainly a lot more understandable than Autism Fatigue is.

Trying to get people to understand the concept of social overload or the need to conserve energy for a more important commitment the next day is difficult. A lot of people still don't understand how draining social activities can be - even if I'm enjoying them immensely!

It's true that the satisfaction I get from doing things can give a boost to my flagging energy levels it's rarely enough to compensate for the losses due to sensory environment and stress.

I hope as time moves forward and more of us are talking about these concepts that society as a whole becomes more aware and more forgiving of our needs. I've had to plan these few weeks so very carefully  to ensure that I make it to the end still in one piece and still able to enjoy my final event - England vs Italy in the 6Nations at Twickenham - a hell of a way to finish off my 30th birthday week!!

Beyond the comfort zone

I'm not sure where this recent increase in my need to self-challenge has come from but lately I'm feeling more and more desire to expand my horizons and continually push myself beyond my comfort zone.


I think it has a lot to do with my falling back in love with rugby, not that I ever really stopped liking it, I just got very 'meh' with competitive sport in general last year, no one sport or teams fault, just a slowly growing unpleasant feeling about attitudes and commitment.


I believe that to succeed in life and in sport you must be willing to commit everything to the pursuit of your goal. Don't half arse it and expect a medal, promotion, achievement on the other side.


Personal and professional growth takes work and effort, it takes a desire to become a better person and an acceptance of what the current failings are.


I have so much respect and love for the way the England Rugby team approached the recent Six Nations tournament, especially coming on the back of the World Cup. It would have been very easy for them to roll over and play dead or to come out all guns blazing like it was a wild west showdown. But they didn't.  They came out with passion, energy, and dedication. They had a game plan and they stuck to it. Get the job done and get it done well. You only had to look at the team's reaction after the skipper went down; concerned but pulling together for a quick team talk before going into running drills. No standing around chatting or hassling the medical staff, staying focused on the job in hand and make sure they were ready to go again as soon as the ref resumed play. (There will probably be a post at some point about my thoughts on rugby vs football referees!)


Taking a massive disappointment and channelling that experience into a determination to do better is something I hope I can keep doing; the next few weeks are full of a lot of challenges for me including 3 exams and a social event I'm terrified of so here's to positive thoughts and just getting on with getting it right!


And if I fail, well, some of the best people in the world have failed at things, they just kept going and didn't let it define them :)

Autism Training and Presentations

Having been sorting through my laptop and trying to organising my filing a bit better I thought it might be a good time to record the various topics I have spoken about in the past, along with the ones I have things prepared for, just in case anyone would like to learn more!


* "Education: Learning to Cope"
* "Autism in Pink - Personal Health domain"
* "Autism Training for Schools - sensory focus"
* "Females and the Autistic Spectrum"
* "Finding the balance between Reasonable Adjustment and Professional Development"
* "Pressure and Perfectionism - Coping with Society's Expectations"
* "Sensory Sensitivities"
* "What the Future can hold"
* "Autism and Sport - why doing something is important"
* "Social Interactions - how to start them and how to survive them"
* "Overload, Meltdown, Shutdown - what to do when things go wrong"


Most of these are aimed at people who want to learn more about Autism or who want guidance for how to improve things for Autistic people, please do get in touch if you want anymore information about anything above or want me to come talk about something different, I'm willing to talk about pretty much anything I have experience in!

The A Word - thoughts and feelings

Its been hard watching 'The A Word' series on BBC1 as it brings out a lot of painful memories and feelings about my own journey from ignorance to diagnosis and beyond.


I love the concept of the show and think its wonderful that the BBC commissioned a show that can help bring Autism to a wider audience, however I do worry that by nature the show is 'drama' and may end up pushing a more dramatic/extreme journey on its characters just for the shock factor.


The latest episode dealt with the concept of home schooling and the specialist vs mainstream vs alternative approach argument. Its a topic I care passionately about as someone who works within the education field; my place of work is technically a mainstream school as its not an EBD/Special school but as a PRU we do have more flexibility than standard secondary schools. (Don't get me started on academies, that's a whole separate issue!)


The main argument in all this is not necessarily about which style of education is best for the autistic child but about the social inclusion nature of childhood - if you spare the young child then pain of school/classroom due to fears of bullying, exclusions, SEND problems then unfortunately I really believe you are creating larger problems down the line.


Unless you fully intend for the child to live out their entire adult life in sheltered supported accommodation and make no form of contribution to society then you owe that child the right to learn the skills they will need for adult life. If you overly protect them as children then how do they learn the required skills to cope with post-16/18 life? There were parts of school I absolutely hated but I would not exchange those hard-earned lessons for anything now - I needed to learn that not everyone could be trusted, that not every 'friend' truly was, that I was going to fail at somethings and succeed at others and that sometimes there is no rhyme, reason, consistency or logic to life, sometimes its just not fair!


Being made to cope with the mainstream classroom allowed me to cultivate a thicker skin about Joe Public and their opinions/actions, it also allowed me to develop the coping mechanisms I use regularly now about sensory overloads - particularly in the workplace and when out at social events.


I'm not saying that mainstream is right for every child or that every autistic person is capable of living the kind of life I do, but I do feel that by restricting the child's experiences of 'normal' you are creating a stunted, unprepared adult who will not be able to cope with this crazy world we all exist in. People are more understanding now of the damage emotional neglect can do at a young age - maybe we need to be considering what long-term effects can come from not allowing children to experience the nastier sides of childhood as well as the positives.


After all, life is about balance isn't it?