Thursday, 14 November 2019

Coping when a Special Interest goes wrong

I write this having finally emerged from one of the hardest weeks of my life. It's not been life changing like when I lost my job last year or as utterly devastating as when I lost my grandfather 11 years ago but it's been a week of hurt and anger with every emotion amplified by the fact that I don't have something I love to turn to for distraction because what is causing me pain *is* the thing that brings me so much joy normally.

For those who don't know me or haven't read any of my other posts I should explain that my one and only Autistic Special Interest is Rugby Union. Specifically Saracens and England senior mens squads. Both of whom have had rather difficult weeks to put it mildly.

And that has left me utterly bereft, my emotional compass is effectively spinning in the wind as I'm overloaded by negative thoughts of loss, betrayal and heartbreak whilst having no positive input of joy and familiarity that I normally get when thinking of either team. Consequently not only have I been on an emotional plummet all week but without anything to cushion the mental blow I've had to deal with the physical reaction of my body to stress and shock - namely a lot of time spent huddled under a blanket shivering or hugging the toilet while my abdomen ripples with pain.

Even trying to forget about the rugby world for a while has been near impossible, as my living room is full of framed photos of key moments, signed items and all my #30GamesFor30Birthdays challenge programmes and memorabilia - things that normally inspire me and make me smile!

When a special interest is turns negative, even if only for a short while, it's really hard to cope with as it can feel like a physical part of yourself is missing, there is an aching feeling that lays over you like a pseudo-grief blanket, wrapped around you cocooning you, somedays feeling heavier and harder to shrug off than others.

Where in the past I would have used my rugby memories as a way of coping with trying situations I now find myself shying away from those memories, scared that they have been irreparably tainted in some way, and so no longer help me focus and dig deeper into my resilience reserves but instead fill me with a sense of melancholy.

People have tried to help me as things have gotten increasingly harder over the week but while the intentions are good there isn't the understanding of just how deep this runs for me, that I'm not merely "upset" about everything that has happened  but have been brought emotionally to my knees and am now floundering, drowning in this void.

Special interests are a core part of the life of an autistic person, they bring us joy and focus, they are part of a predictable routine for a lot of folks. In a lot of ways it's like falling in love, you dont know what (who) it will happen with (although you may have a 'type'), you cant fight against it and you dont know how long it will last.

I "completed" my childhood special interest in dolphins by achieving my ultimate goal when I was 14 by swimming with them in the Grand Bahamas. This moment of absolute joy allowed me to then "pack away" the interest, I no longer needed all the trinkets and things in my day to day life, stickers went unused and jewellery and clothing got retired to cupboards and drawers rather than being out constantly in use.

But that was a good ending to that special interest, it was a conclusion to the dream. What has happened the past week or so with rugby union is neither good nor conclusive, it's been harsh and ugly and painful. It's not a relationship that has ended by mutual agreement or by peaceful death warm in bed after a 70th wedding anniversary. Instead it's like the person you live with, the person you're in love with, forgetting your birthday and then finding out that they've been spending a lot of time with a gorgeous colleague and there's rumours going around the office.

So what do you do? Try to make a clean break, walking away and not looking back? Or wait, see how bad the situation truly is when your eyes are back to calm and logical rather than emotionally tinted, and then see if it's something that can be overcome?

One thing I do know is that what ever path I take this experience will leave a scar on my emotional core, it will change me and probably make me a lot more reticent to fully embracing the next interest that takes my attention and becomes special.

Sunday, 21 July 2019

Apollo 11 - the Eagle's legacy

This weekend saw the 50th anniversary of the incredible achievement of man first setting foot on the moon, a target many thought to be impossible for a long time.

To me the beauty of the Apollo 11 mission is not in the simple act of Neil Armstrong's boot touching grey dust or even the internationally famous words that accompanied it, but more the actions, the experiments, that followed.

NASA may well have been tasked with sending men to the moon as part of the testosterone fuelled space race with Russia, but at the heart of Apollo and all the many things that lead to that incredible moment, was a desire to learn - to expand our knowledge beyond our own natural surroundings and see for ourselves all the wonder that the universe has to offer.

I fell in love with space exploration and NASA as a small child, I'm of a lucky generation - born while Concorde still soared in the skies and the Space Shuttles were the magnificent creme de is creme of human achievement.

I loved reading about the history of NASA, about Mercury Seven and the Gemini project, I still recall the terror I felt at reading about the Apollo 1 tragedy for the first time and being profoundly saddened that the names Grissom, Chaffee and White were not ones that had ever been taught to me in school.

Challenger was a name that was familiar to me as a child, even if the individual names of the crew weren't. Reading the full description of what happened that day brought me to tears and I remember being momentarily grief-stricken - not only for the families of those long since lost, but for everyone involved in the programmes, for all those in NASA who stood helplessly unable to do anything in those heart wrenching moments, so unlike the incredible days of Apollo 13 when NASA's tenacity and brilliance was able to perform seemingly miraculous feats to save those three lives.

And when in 2003 Columbia disintegrated on re-entry my heart broke again for more than just the tragic loss of life, just as with Concorde we were witnessing the end of a truly magnificent scientific achievement because the risks had become too high.

But still, despite the mothballing of the Space Shuttles, the dream of space continued with the growing ISS in the sky - a wonderful piece of collaborative work that gives hope to that dream of space stations and starbases from TV and movies.

As we celebrate the gold anniversary of man's first steps on the moon's surface I choose to remember the hard work and sacrife that went in to ensuring those dreams were achieved as well as those that are continuing today to bring burgeoning hopes to reality.

I choose to celebrate the achievements of Neil and Buzz on the surface, the equipment they left and experiments conducted so vital for work over the past 5 decades, and to celebrate the bravery of Michael, waiting up above knowing that there was a potential of having to leave them behind and come home alone if the Eagle couldn't take off.

I never got the chance to shake Neil's hand and the likelihood of ever getting to shake Buzz or Michael's is decreasing every day but I still dream of one day seeing live a launch of a crewed mission, of experiencing weightlessness myself, of maybe even getting to see our incredible planet from orbit.

50 years has now passed since humanities greatest scientific achievement to date, and while there is no denying that science continues to grow and evolve I can't help but feel that the legacy of Apollo 11 has lost momentum, that the world is more interested in "going viral" and science is venturing into increasingly ethically-murky fields of tracking peoples thoughts via biometrics and AI usage.

But there are still people who are captured by the wonder of space, the pure science of physics and the endless questions still unanswered. I hope there are youngsters who have been inspired by the celebrations this week and are part of the generation that exceeds the achievements of Armstrong, Aldrin and Collins.

I've watched some amazing programmes the past few days and have been rereading old textbooks I haven't touched since I transferred off my astrophysics degree some 12 years ago - never has the desire to return to that study been stronger. And I know that there are so many people out there working in those fields right now trying to advance our knowledge and expertise further, waiting for the moment we can make that next giant leap for mankind.

To paraphrase some words from Tom Hanks brilliant portrayal of Jim Lovell; I look up at the moon and wonder, when will we go back, and when will we go further?


Saturday, 2 March 2019

Processing big changes and shock news

February has been one hell of a month for me! It started with an intense two day away meeting for work (featuring an oh so lovely fire alarm evacuation!) and went on to include a puppet play, a conference, a trip to Liverpool, the first 3 rounds of the Six Nations, my boss (HR director) leaving, meeting the new interim director, and was topped off wonderfully on my unseasonably warm birthday with the news that my big boss is leaving.

Yes, Mark Lever CEO of the National Autistic Society is leaving his role in May and it has thrown me into a complete tailspin.

See, not only is Mark my boss and the person who helped create my amazing job, but he's also been in charge of the NAS since before I got my diagnosis 10 years ago! I literally do not remember the NAS without him in command!

So this news on its own would have been difficult to process and come to terms with but coming just 3 days after I said a tearful goodbye to one of the most amazing managers I've ever had, well, let's just say shell shocked doesn't even begin to cover my emotional state!

And because the email to staff came out on my birthday, with the announcement to the World on social media coming hot on its heels the same day, I found it incredibly tricky to process. I ended up mentally shoving the news to one side as I left the office at midday to meet my dad for lunch, feeling incredibly grateful suddenly that I'd booked the afternoon off as leave. I tried my best not to think about anything work related the rest of the day, throwing myself into enjoying my time with my dad in the sunshine and then later the Chinese takeaway with my mum et al at home.

But consequently come the next morning I was stuck in this vaguely grief-like state of shock still, tears appearing randomly, fear for my own career future gripping at me sporadically (my contract is up in September and the two people who designed my role will both be long gone from the organisation by then!)

I travelled in on the train that morning in a state of complete disarray. I have never before felt more in tune with autism being called a disorder, I felt so utterly disordered and adrift in my own swirling sea of emotions.

Slowly over the last week, thanks to some wonderful colleague's and a very supportive family, I have come to recognise and accept the emotional response I am having and start to identify how to deal with everything I am experiencing.

Essentially, it was emotional overload. And the closest I can metaphor it to is a sudden bereavement. It wasn't as intense and definitely is a temporary thing, unlike grief which can last a lifetime, but the gammut of emotional and physical reactions was very very similar.

As soon as I acknowledged that it was an overload of the emotional variety I could begin to employ some of the techniques I use for sensory overload and managed to make some headway in the over all processing of everything.

Now, a week later, I'm still struggling occasionally. I deeply miss my former manager who's support in this would have been invaluable - both as an emotional support but also in her role as HR director she would have been able to guide me through the next steps to know what is coming in the recruitment/handover process as well as reassuring me about my own place in the organisation.

And that's not a slight on the interim, but he is still learning the job, still getting to grips with the huge role he is performing, to have the news break of the CEO leaving on his third day can't have been easy either!

I haven't yet reached "Accept and Adapt" - Henry Fraser's wonderful saying being my ultimate goal, and I'm still having trouble controlling my chimp and the gremlins in my head, but in the words of someone who may or may not have been the UK's best prime minister "If you’re going through hell, keep going"

Saturday, 16 February 2019

All in a Row - an autistic review

For those not aware of the play "All in a Row" or the furore around #Puppetgate I'll attempt to give a brief overview; this play first burst into my awareness a few weeks ago via Twitter when I saw someone's post about a puppet replacing an autistic child. This got me very confused at first until I read into the story and discovered about the existence of the play and the nature of the autistic character in it.

The play describes itself as thus:

Laurence likes pizza.
Laurence is about to go to school.
Laurence thinks it’s okay to wee on mummy’s pillow.

Like any couple, Tamora and Martin have big hopes and dreams. But when your child is autistic, non-verbal, and occasionally violent, ambitions can quickly become a pipe dream.
In a household brimming with love, resentment and realisations, meet Tam, Martin and Laurence’s carer Gary as they struggle to care for their beloved boy. On the night before social services finally intervenes, who is the victim here? Who was the traitor? And who do you blame when you can no longer cope?

The storyline is about two parents, their 11 year old autistic child and his support worker, and all the chaos that unfolds the night before Laurence is due to go to a residential school 200 miles away - something that it seems was triggered by Social Services getting involved after an anonymous call reporting bruises on Laurence.

Now, the storyline itself, to me, is incredibly thought provoking. It encompasses all the fear and rage that families battle as they try to do their best for their loved ones, I empathised a lot with the parents emotions during the play, not in relation to an autistic child but thinking about my own grandparents and the increasing possibility of them needing assisted living at some point and our growing fears over dementia and 'losing' them.

But, no matter how much I loved some of the script, salty language and all, or how much the heart of the plot line resonated I could not escape from the huge elephant in the room.

That damn puppet.

It was offensive, it was a man with a grey bizarre puppet body in front of him running around making non-verbal noises and, when heading into meltdown, biting the other characters.

I don't understand or agree with the statement from the artistic director:

To me this is a cop-out, yes a child actor may well have struggled with some of the language and volume levels to the adults screaming rows, and yes there would have been the need for caution when doing the physical restraint scenes (at one point the father is over the child pining him down after a full-blown meltdown where he attacked his mother from behind as she was screaming at the father) but that in no way means they should jump straight to using a bizarre half-puppet prop instead!

The fact of the matter is that there was an adult actor behind the puppet, controlling the movement and providing the vocal noises. Why could this actor not simply have been Laurence? Why the need for a grey faced puppet torso? Yes having an adult play an 11 year old may look slightly odd but most good actors are capable of making you forget those things with their performances.

And it makes me so angry that what could have been a wonderful opportunity for discussion about residential care and the fear of sectioning and mental health units has instead become all about a damn puppet.

I'm so disappointed that the people behind that choice still don't seem to understand why autistic people and our allies are angry, I attended with a non-autistic friend who works in the autism research field and she too was incredibly uncomfortable with the entire way Laurence was performed.

And it makes me sad, there was such a wonderful core to this play, a real understanding of fear about change and the terror over the power that 'professionals' have. There is a brilliantly nuanced conversation between the father and the support worker about how residential staff cant hold doors shut and how there is the possibility of sectioning to a mental health unit if Laurence is asked to leave the school.

It nearly brought me to tears because these are incredibly real fears being delivered in a very realistic style, its shouting and arguing and absolute heart-breaking devastation at trying to prepare for someone you love to move somewhere 200 miles away from you.

There were some odd moments and some "saw that coming a mile away" moments - a very strange, clumsy and out of place comment from the support worker about animal reincarnation that was quite offensive, although it was dealt with superbly by the parents, and the almost soap-like nature of the mother getting drunk and trying it on with the support worker - I was sat in my seat silently screaming "workplace harassment!!!!" during the whole cringe-worthy lead up.

And, of course, the obvious (to me at least) conclusion about the anonymous call to Social Services. It was cliched but there was still some beautiful dialogue from the characters in the build up, the raw emotion being displayed by the actors was honest and hard to watch.

But again, through all of this I was distracted by the damn puppet. That and the facial responses of the front row of the audience on the other side of the 'stage' as this whole saga played out in a 'living room' on the same level as the first row of seats, with only a small raised platform area at the back of the space, representing the 'kitchen' area (complete with stocked cupboards and an openable door to a 'fridge').

I can't help wondering just how powerful this play could have been if there had been a proper actor used to portray Laurence, then all the furore and anger would have been replaced with meaningful discussions about family situations like the one presented, about residential schools and ATUs, about the procedures support workers and social services are supposed to follow, about other people's pity and outrage as the father describes when telling a tale of a trip to the park.

There were some elements separate to the puppet that I didn't like, I objected massively to the cliched scene between the mother and the support worker that follows a conversation about online dating, and I really disliked the fact that the father was implied to have smoked marijuana whilst out of the house buying cake - by the end of the play the support worker has left and the two parents are either stoned or drunk, neither in a truly fit state to be responsible for a child as vulnerable as Laurence.

To be honest there was a point towards the end, during a massive argument scene, that it did cross my mind that the only reason I wasn't worrying about Laurence ending up dead somehow was because I knew that would have been mentioning in all the criticism of the play going around already.

The final ending was vaguely sweet, I'm not a fan of social stories really but having Laurence between his two parents on the sofa as they sobbingly read one to him to prepare for the move to the school was the right way to end the play, there were massive implications throughout that their marriage is not going to last once Laurence isn't in the house holding them together anymore so to see them united around him was a nice way to close.

I wish I could see a performance of the same script with a young adult actor playing Laurence, and I wish more than anything that the storyline I watched wasn't realistic, that there aren't families out there going through the exact same things.

It was hard to watch (both content wise and sensory as coloured lighting is used along with several instances of shouting and screaming) and hard to process my thoughts on but overall I'm glad I went, that I saw it for myself and made my own judgements. I hope it can be a step towards the play I want to see, the play the autistic community deserves to have put on.

Overall score: 3/5 - huge potential ruined by one offensive choice.

Tuesday, 12 February 2019

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?!?!

Friday, 8 February 2019

Friendly acquaintance vs friend

At what point does someone you know become classified as a friend? It's a question I've long struggled with, not knowing if it's something I can classify myself or if it needs to be a mutual thing - if you consider someone a friend but they don't see you as any more than an acquaintance then can you truly say they are a friend? Should the relationship be classified by the lowest common denominator?

I try to make myself be pragmatical and honest about classifying people as friends; there are many people I know and interact with in my life but I would consider myself to have very few friends.

I think this is a self protection thing, I will only let myself fall a person a friend if I truly trust that I can depend on them being there for me when I need, a so-called "fair weather friend" is not a friend in my opinion.

And so I find myself classifying most people in my life as "friendly acquaintances" - people I like and interact with in wonderful ways but not people I could call for a chat when walking home or who would show up at my bedside if I landed myself in hospital.

I used to use markers of knowledge as a way of determining friendship level - did they know my siblings names, my favourite meal, the film moments that make me cry?

But I've come to realise that there are people out there who know those answers, or did at one point, but who have drifted away from me and are not now what I would consider to be a friend any more.

It's hard to admit sometimes that a friendship is over, it's not like leaving a job or a relationship break up when a clear conversation or action occurs, friendships can simply fade away and die due to neglect - ghosting in unintentional format.

Different types of acquaintances require different "litmus tests" for friendship - there are a several work colleagues who I get on really well with and have a huge amount of trust in, but I still don't consider them friends. They are wonderful people but our relationships are circumstantial and "in the moment" - were I or they to leave our current workplace I sincerely doubt I would ever intentionally hear from them again, interaction would be reduced to odd social media exchanges and the occasional reunion at another colleague's event (weddings, birthdays, leaving dos for example).

And while I would like to explore the idea of actual friendship with some current work folks I know that it's not that simple, friendship is a two way street and a lot of people already have enough friends in their life and not a lot of time for more.

But the thing that strikes me the most about this whole concept is that we don't have more classifications of friendship. We have them for romantic relationships - you can be seeing, dating, living with, engaged to or married. A single relationship with someone can go through all stages and it's mutually decided, there are even times when it can be reclassified down - a couple can decide to call off a wedding and return to a non-engaged status but still be in a relationship.

I guess in the very confusing world of social relationships I'm just looking for more clarity in a world where someone can have hundreds of Facebook "friends" and yet be incredibly lonely.

Tuesday, 20 November 2018

Anne Hegerty - Queen of our Jungle!

Something phenomenal happened this week in Britain and it wasn't anything to do with sport, politics or music - no, it was on one of my least favourite mediums of entertainment . . . reality tv!

Yes, after years of vaguely following the escapades of 'celebrities' via newspaper headlines and trending hashtags I am now a fully committed, even got reminders set, hard core fan of I'm A Celebrity Get Me Out Of Here!

And its all down to one incredible moment, when Anne Hegerty started talking openly on prime-time national tv about being autistic!!!!!

It was so powerful a moment, hidden in so mundane a scene, that it brought tears to my eyes, finally someone has broken that ceiling and is simply *being* autistic on screen, not playing a role or being the token person trotted out for an interview or camera piece but just being themselves!! To see her being so understood and supported by the other people in camp is also incredibly heartwarming, these are real people who don't have the background understanding of being autistic or family to autistics themselves and yet they are *getting it*!

And its so much more than that, oh the conversations it has started! Suddenly the country is alive to discussion about autism and being autistic as an adult and a female, things like sensory issues are being talked about by random non-autism world people online, and the world seems just a bit brighter and more hopeful.

What ever she achieves, however far she gets, Anne Hegerty is already our Jungle Queen just for being herself - thank you Governess!