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.

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?!?!

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!


#TeamAnne

Terminology

I've been doing a lot of work recently on how to best support fellow autistics within the world of employment and social activities and as such have been thinking a lot about the ways to mitigate factors that precede the different types of meltdown. For explanation for the past few years I've been defining my meltdowns as having three categories:


Fight Meltdown
This is the most commonly recognised "meltdown" - the classic external expression of being autisticly overwhelmed. Its also the one I experience least of the three; its very rare I find myself shouting uncontrollably or lashing out with self-injurious intent, if I do its often because the "fight" is being aimed at myself as I try desperately to avoid one of the other two meltdowns.


Freeze Meltdown
Becoming more commonly recognised now under the term "shutdown" - the reaction turns inward, lots of internal negative/panicked thoughts, a need to 'hide' expressed by trying to become as small as possible through the tightening of the body space ('hugging' oneself, knees pulled up to chest etc). May look like a catatonic response as all movement stills and eyes becomes unfocused and non-responsive. Can include a measure of self harm if the freeze response is initiated to over-ride the flight response.


Flight Meltdown
An 'evacuation' response, the immediate need to 'run away' from the trigger in question; this can be as simple as just walking away from something, but can also include abandoning shopping in the trolley or leaving the room mid conversation. This reaction is a dangerous one, particularly in children as the 'flight' can lead them directly into more hazardous situations such as traffic. The response may be fought against and 'over-ridden' by the freeze meltdown as the logical part of the brain fights to retain control of the reaction, knowing that to flee the circumstances may be dangerous or have long term negative consequences.


There are two other terms I refer to a lot when I give talks and training, these are things I am (very slowly) trying to write a book about as I don't think they are very well understood, even in the autistic community:


Social Hangover
The consequences of an intense period of socialising - often a conference or highly stressful event like a wedding or funeral. The 'symptoms' are very similar to an alcohol hangover and can take several hours to dissipate. Best dealt with in the same manner as the post-meltdown period and whenever possible planned for, its very rare a large scale event like a birthday party or day out at the zoo won't have some measure of social hangover the next day!


Autism Fatigue
The almost chronic exhaustion that arises after a period of time exposed to lots of social interactions, sensory input or extreme emotion. It can be built over time or happen very quickly, I often experience autism fatigue at the weekend after long weeks at work when I've had to deal with lots of 'peopling' or my commute has been difficult (not unusual on the GNR/Thameslink line!)

Westminster Autism Commission speech 2 - A Spectrum of Harm

The speech I gave on Wednesday 28th March at the launch of the Westminster Autism Commission's latest report into fake cures "A Spectrum of Harm"

This report started life when one of the Commission members, shortly after our successful healthcare inquiry report, asked “Shouldn’t we do something about quackery and fake cures?”

Well, the short answer was yes we should, but it took a while to piece together exactly *how* to do so. We were at a loss to begin with, as to where the responsibility even lay in legislation and just who we were wanting to talk to.

And this wasn't a problem unique to us, so many people have told us their stories of how they've not known what to do when spotting a social media post advertising a false remedy, or heard someone recommending a treatment that sounds strange or dangerous.

The continual expansion of the internet and social media has been a boon for a huge number of autistic people like myself; we use it to reach out to our community and support each other across fields and oceans.

But there is a nasty edge to the internet and the surface doesn't need scratching very hard to find an ugliness waiting to take advantage of other people’s desperation and lack of knowledge.

The fear that strikes into my heart is not of the charlatans and snake oil salesman themselves, these people have always existed, but that we, as a community, have become "profitable", that being autistic is still being seen as "wrong" and needing to be "fixed".

Parents will always search for ways to mould their child to their own ideal and initially struggle with things that don't fit their preconceived ideas; you know the stereotypes - the son who's sexuality doesn't match his father's, the daughter whose lack of ambitions horrified the mother who broke the glass ceiling, the grandchild who just won't "settle down and get a real job"!

But this isn’t about demonizing parents, it’s about supporting them - what we desperately need now is active guidance for parents towards support groups and autistic adults they can learn from, guidance for school staff and medical professionals on how to report concerns about dangerous treatments being used or talked about, and guidance in how to tackle the huge giants of social media and get them to realise that not every adverts money should be accepted and evidence bases are needed to promote treatments and therapies!

But more than that, we need those who hold the power to regulate to step up and start taking responsibility;

When it comes to vile ‘treatments’ such as MMS, we need the MHRA to extend to cover all healthcare products and not just those deemed ‘medicine’ by the NHS,

We need the Food Standards Agency to be clearer about its remit which extends beyond sandwiches and takeaways!

We need more clarity from all the agencies with responsibilities over what the public are told about products and how they can access them, and we need easier routes to advice and reporting.

These regulatory bodies should be easy to use for us and hard to escape from for those who seek to do us harm!

There needs to be repercussions for those pedalling these products; legal consequences – fines and prosecutions.

At this point I would like to thank the representatives of the agencies that did engage with us, and came to our evidence session, along with all the people who responded to our survey.

I would especially like to thank Emma Dalmayne for her tireless work in this area, it’s not easy to go out there every day and fight against people so entrenched in their mind-sets that they don’t see, or don’t care, about the harm they are doing.

We know that sadly, we will never be able to fully stop the actions of abusive people in this world, but between Emma’s work and our Commission’s report here today we hope we can make it harder for good people to get conned down those paths, make it harder for not so good people to make money out of those scams and ultimately make it harder for people to find out about them.

Vulnerable people are being targeted and we lack the arsenal to defend our rights as human beings, we need to bring the guidance, legislation and regulations into the smartphone century and realise that having the world at our fingertips means we need to be more aware of what is out there and what hopes, dreams and snake oil is being sold to people.

We do not need fixing, we do not need curing, but we do need supporting in our fight.

If you wouldn’t want it done to your child, then don’t stand for it being done to an autistic child.

Tales of Wisdom; Operation Extraction!

So I've been fairly quiet recently in terms of blogs, social media and general non-work activities.

It all started in October when I came down with the flu. Not a really bad cold but the genuine I can't get my legs to move for 5 days, even breathing hurts, flu.

Having had the flu twice before in my life (once was the awful swine flu version) I know how long affects can linger and still cause issues. So I was expecting the dull aches and joint pain and excessive tiredness to roll on for a few weeks at least which is why it took me so long to realise that the pain from my left side jaw was abnormal. I could tell that my gums had receeded slightly during the flu and thought that it was just a hangover pain from that, an ache in the bones from sensitivities and the flu.

It took me about a month to work out that actually, that teeny nub of a wisdom tooth had started moving again and it was essentially teething pain! A trip to the dentist at the start of December revealed that the tooth was trying to erupt but was so impacted it was on it's side, pushing into the next molar as its back point was erupting through the gum.

Ah great

This meant surgery to remove the tooth

Oh

Okay

The thing is I've had a pretty healthy life so far, made it to 30 without ever having had any big medical procedures like surgery. Sure I'd had MRIs done for medical research and the odd xray and ECG but nothing major, nothing that would involve General Anaesthetic. And this would.

I could have tried the local route but given how little of the tooth was through the gum it was going to be a fair bit more traumatic for my body than when I had two baby teeth cracked out at 13! (No adult teeth grew for my 5s, we thought this would make future wisdom teeth less of a problem!)

I was also acutely aware of how difficult I find regular dentist appointments and how utterly pushed to the edge of my coping ability I was by a molar filling a few years ago. No, going fully under was the best way for this to happen!

So, having decided on the best way forward I was then stymied by the eternal curse of the UK - the NHS waiting lists!

My dentist was unable to do the procedure so had referred me to a specialist surgery just before Christmas, and they in turn referred me on to Lister hospital - at the time of referral at the start of January Lister were advertising a 15 week waiting period.

I figuratively gritted my teeth at this (literally doing so was far too painful!) and simply began to carefully manage my pain relief routine (which now include codiene three times a day) and carry on with work as normal.

On my own I probably would still be waiting for Lister to get in touch about a consultant appointment ahead of the surgery bit luckily for me I have a very caring, very interfering family!

I'd spent a few days with my Grandparents while my mum and stepdad were on holiday and my Grandad had seen the pain I was in, even with the religiously followed pain relief schedule, and decided enough was enough. Cue a few days later a conversation with my brother where he admitted that they'd been talking together behind my back about arranging for me to go private for the procedure!

Now, I'm a complete JAM 30-something thanks to rent rates and exorbitant train fares so there was no way I could ever afford private care, I could barely afford the price quoted just for the initial consultation! Luckily my brother is a complete softy when it comes to me and he pulled off a modern-day miracle by convincing my Grandad that it was his own idea to offer me the help I needed!

As it turned out the £2k price tag was a bit more than my state-pension grandfather could afford but my mum was willing to add a contribution to the pot so all I had to cover was the £150 pre-surgery consultation fee which my dad ended up giving me after the surgery! I did still have to cover the mounting costs of pain relief however - there were definitely days my resolve to not get them on prescription was severely tested, especially the day I worked out I'd spent over £60 on them!

Once we'd decided to go ahead with the private option it was all really quick. (It didn't feel like it at the time as I was still struggling into work everyday on huge amount of pain relief and a limited diet!)

I called for an appointment Thursday 25th, was given Monday 29th for the consult and had the surgery less than 2 weeks later on Friday 9th!

The one thing I did find distressing with it all moving so fast though was the lack of time to process what I knew and what I still needed to know - I was calling the hospital from work the day before the surgery to check what I was supposed to do about taking my pain relief the next morning as I was nil by mouth from midnight!

The hospital was not far from my flat but I would be going home with my mum afterwards as they wouldn't release me to go home alone post GA - fine by me, I wanted home comfort TLC anyway!

I was due at the admissions by 11am so had to plan my night before and morning carefully; last big meal at 10.30pm so when I went NBM at midnight my stomach had enough in it to last! I set alarms for 5.45am so I took all my usual medication plus pain relief with the last glass of water I was allowed before going back to sleep to "waste" the hours before I was due to leave - pretty sure my anxiety wouldn't have fared well against trying to do anything else that morning!

Arriving at the hospital was odd, I had loads of stuff in my mum's car to go back to hers after (like my huge bed blanket and multiple pyjamas!) but the bag I took in was fairly small - I wasn't expected to stay more than a few hours after coming round.

I had, naturally, completely freaked out the night before and had written on my phone a slightly rambling, slightly soppy 'letter' to my brother and had even set an alarm to go off on my phone that evening telling my mum the password to unlock my phone "just in case"!

Once admitted I was lead through to a lovely room where my mum helped me pass the time with idle chatter before the student doctor arrived. Mum had to go back to work then so I was left to twiddle my thumbs and answer the same questions multiple times - I was starting to doubt my own answers by the third time round!

Having finally got my hands on the after care leaflets I started reading the information and was trying to work out the likelihood of making it to work on Monday morning when I was given a gown and stockings to put on. I was told I could keep my underwear on which was a relief, and could put my long towelling dressing gown on over the top, which was good as I epically failed at working out how to do the ties up by myself!

The stocking though were a nightmare! Awful things that made me feel vaguely queasy as soon as I'd wrestled them on. The foot bit seemed to be wrong no matter which way I turned it and I couldn't work out why only the tips of my toes were poking out.

I had just about got myself sorted and was messing around with my sensory frog and social media postings when they came to take me down to theatre - I shuffled off down the hall in my stupid stockings, slippers, towelling robe and flapping open gown, clutching my frog with the strength of a front rower!

My anxiety was spiking massively at this point, I knew what was coming even though I'd never been through this before. A cannula and then lights out, simple right? Well, it might have been had the first cannula gone in properly! Maybe it was because I was so tense and nervous or maybe it was just bad luck but they buggered up the first try in my left hand and had to take it out. This left me lying there going through my usual shock reaction to a needle (I normally go extremely white and neatly pass out just having blood taken as I can feel the needle under my skin!) and feeling like I wanted to be sick and yet still not able to have the sleepy stuff pumped into me! At this point a very kind lady helped me transfer my frog to my now achy and taped up left hand so they could put the cannula in to my right. I was very surprised they hadn't taken him off my already, and when I slurred something to that effect the lovely nurse told me that I could keep him with me and covered my hand holding him with the sterile blanket! 

Cannula now inserted into the right hand I think I actually passed out before the anaesthetic hit me as it felt exactly like previous needle related faints did!

Next thing I know I'm looking out of very heavy lidded eyes at a glaring white ceiling with a very odd sensation over my whole head and neck. A face looms into view and says something to me but my ears are like they are underwater. Then there's a very peculiar feeling and a slight gag reflex and I realise the breathing tube has just been pulled out and suddenly I'm aware of how strange that had felt!

The voice comes back a bit clearer now telling me that I'm in recovery and doing nicely. Another voice joins in above my head but I can't really tell what's going on, I think I fade back to sleep at this point because the next thing I know the bed I'm on is moving and I'm feeling seasick. Still barely able to lift my own head or keep my eyes open I'm wheeled back into my room and asked to shift across to the bed there. How I managed to coordinate my limbs in the right way to achieve this I'll never know because I was so heavy everywhere I could barely feel my extremities!

Settled into the bed I think I dozed for an hour or so until I was woken by a nurse doing one and taking my blood pressure - a sensation I've never liked and always had a minor sensory reaction to. At this point I became aware of how hot I was and almost desperately tried to free myself of some of the numerous layers on my lower half - I had on the medical stocking, calf wraps of some kind, a foil type blanket, and actual blanket and then a duvet! I was cooking under all that!

I convinced the next nurse to take off the weird calf wrap things that apparently were an extra anti-DVT device to keep my muscles stimulated (even though I was only under for an hour or so I was given them "just in case"!) and I was able to start cooling down. The stockings still irritated me like hell though, tight and extremely uncomfortable in my highly sensory sensitive state.

No one had really been able to give me an accurate idea of what any of this post-op recovery would be like so I was just lying there in my dopey state wondering what would happen next. I eventually managed to get a nurse to give me some painkillers that I could take with small sips of water as my entire left side of my face felt like it had been hit by a car. The surgeon came by around that time to check in on me and tell me that everything had gone well, giving me his office card to call if I had any problems in the immediate recovery period.

After some more sleeping and more begging for the stockings to come off they did and I was able to move my legs about enough to lift myself higher on the propped bed and reach my phone on the side table to text my mum. I was incredibly surprised so little time had passed at this point - only 3 hours had passed from my last text saying the anaesthetist had come to take me down. I still had the cannula in which was causing me discomfort so the latest obs nurse agreed to take it out before my mum arrived. When she got to my room I was feeling miles better as the two little tablets had kicked in and I had regained enough feeling in my throat and jaw to talk reasonably unslurred. We stayed a little while as I was still not fully ready to leave but after half an hour of chatting (including a call to the grandparents) I was okay to get myself dressed and pack up my stuff ready for discharge!

Pt 2 continues in "Tales of Wisdom: The Recovery"

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]

RCGP Autism Clinical Priority celebration event speech

I was asked to do a short speech at a celebratory event for the Royal College of GPs in light of the Autism clinical priority coming to an end soon after 3 years. Dr Carole Buckley (RCGP Clinical Champion for Autism) and her colleagues from the RCGP spoke before me about some of the work the College has done and how the priority status has worked.

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I've spent a lot of time over the past few years talking about being autistic, and feeling like I'm either preaching to the already converted or that I'm just running into a brick wall of ignorance and misunderstanding.


Over the past few years the support that has been visible for this priority and the Westminster Autism Commissions report into 'Access to Health Care' has been both heart-warming and reaffirming that it is all worth it, no matter what the cost.

And there will be a cost, everything costs!


But for me it's not money, it's energy, the reserves I have to draw upon to cope in the here and now.


The term 'Autism Fatigue' is still fairly unheard of, but it is real, and potentially damaging if not managed appropriately.


There are times I simply am so overwhelmed, so drained of energy from just keeping going, so bombarded by the sensory nature of the environment that I am in, that formulating thoughts into speech becomes near impossible.


As a result I can come out of a meeting with no knowledge of what was said, only a headache from the overly busy walls. Or leave a doctor's appointment that was for an earache with a prescription for antidepressants - again.


The trouble is that people look at me and other autistic adults who appear to be coping and don't see someone who needs help; don't see the struggles inside.


I show you what I want you to see; a confident, independent person who lives alone, works two part-time jobs, is a postgraduate student and a freelance autistic speaker, as well as following Saracens rugby club around the country each weekend!


I can't speak for all autistic people, and I would never try to claim to, we are all individuals with individual struggles. But I can say that the majority of us struggle to ask for help when we need it, and struggle even more to cope when we don't get it.


This priority is so important to us because it proves that we are not a 'forgotten' group, that there is recognition in the world of healthcare that we exist, that we need support and that we come in more shapes and sizes than just the little white boy seen on TV.


We need to feel safe going in to surgeries and hospitals; we need to know we're not going to be belittled by receptionists who don't understand our difficulties; that we're not going to be dismissed by GPs who aren't able to hear what we're trying to communicate.


We need to feel confidant that we're not going to get trapped on the mental health roundabout, being passed pillar to post until we reach crisis point.


The work being done through this priority is fantastic, and I can only hope that the continuing efforts of those involve bear fruit, not only for autistic people, but for all people. When you make the world more autistic friendly you are generally making it less confusing, less overwhelming, less complicated for everyone!


We're not asking for UN-reasonable adjustments or a complete restructure of the NHS, we're not even asking for all GPs to become autism specialists overnight! But we are asking for you to continue the good work you are already doing and to keep striving to improve where gaps in practise still exist.


None of us want to be a drain on public funds, none of us want to be unproductive members of society or have poor mental health and terrible wellbeing. We want to be respected and treated in ways appropriate to our needs and sensitivities.


This priority has done so much already in raising awareness of autism; in making sure that the doctors and physicians we have appointments with are trained to understand autism, that the non-clinical staff involved in our care have a better comprehension of our needs, that the environments we have to go in to access healthcare aren't going to make our health worse.


I'm incredibly grateful to the Royal College for making Autism a clinical priority these past three years; I hope that this is not the end, I hope that the work done so far has managed to reach people and had a positive impact on the lives of autistic people and those who care about them.


I know its had a positive impact on mine already.


Thank you.

My speech from the Westminster Autism Commission launch!

On Monday 4th July the Westminster Autism Commission launched its first inquiry report 'A Spectrum of Obstacles' and I was privileged to be asked to speak as an autistic self-advocate.

Below is the speech I had written to give - on the day I think a few words may have gotten changed or swapped around as is the way with public speaking! I hope to be able to get a video of the speech posted online soon :)

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Good afternoon; It’s lovely to see so many people here today to listen to what our Commission has to say – for a very long time now we as a community have felt ignored or pushed aside so to see people from outside the Autism world here wanting to affect positive change is truly heart-warming.

I stand before you today not as a representative of the Autism community, but as an individual, as someone who has struggled both pre and post diagnosis.

You may look at me and not see someone who needs help; you may only see the mask I wear, the person I want you to see. I stand here as a confident independent woman, someone who lives alone, works full-time and splits my free time between the commitments of being a Tizard Centre postgraduate, a speaker for the NAS and Research Autism and whenever possible following my beloved Saracens round the country making friends with both fellow and opposition fans wherever I go!

What you see on the surface however is not the whole story, while some of you may be able to see the stress I carry or the tiredness in my eyes, most people would dismiss it as work related or assume I had a young child at home! And while a not small amount of my stress is from work, there is a lot that is due to the way my autism affects my life.

Some of you may be able to see the strain I’m under trying to control my anxiety, you may be able to tell the level of pain I’m experiencing from my sensory sensitivities, or recognise the amount of effort I’m putting in to maintaining this ‘normal’ image.

But can you know what this will cost me later? The hard recovery process I will have to go through just to be able to function at work tomorrow?

The term ‘Autism Fatigue’ is relatively new but very apt. There are times I simply cannot explain what is wrong with me as I am so overwhelmed, so drained of energy from just keeping going that formulating thoughts into speech becomes near impossible. As a result I can come out of a doctor’s appointment that was for an earache with a prescription for antidepressants – again.

Of course, that outcome is subject to me actually making it into the consultant room in the first place – there have been a number of occasions in the past where I have simply walked out abandoning appointments or tests because the waiting room has become too much and my sensory sensitivities have been driven into overload by the potent mix of chemical cleaning smells, screaming children, airless rooms and over busy walls. When you’re not feeling well and already anxious about talking to someone do you really need to be overwhelmed with images of the many ways you could die?!

I like to think that I’m a fairly effective communicator, able to get my point across and be understood, so when I’m finding it hard to get what I need out of my GPs surgery it’s really not a surprise to me to learn of some of the horror stories that the commission heard. Some of the experiences sent in as evidence were terrifying – one woman told us of her 40 year old autistic daughter who was taken to hospital with a suspected dislocated hip only to discover that it was in fact a 2 kilogram cancerous tumour! Another parent told us of their autistic son only being diagnosed as having acute renal failure after having an NHS health check – for which he is only eligible for because he has learning difficulties.

But not everyone with Autism has learning difficulties.

A regular health check for autistic people would go a long way towards helping the current situation and catching these medical issues before they become life-threatening and more costly to the NHS as well as taking some of the pressure off of carers, parents and the autistic people themselves.
I know I would definitely appreciate an annual health check if only to put any niggling fears at ease and enable me to regularly stay in touch with my GP surgery. I do know from personal experience with my university mentor however that the onus needs to be on the professional involved – I needed my mentor to regularly contact me to see how I was doing, if it was left for me to contact her when I needed I would bury my head in the sand and not know how to deal with the problem, often leaving issues far too long to ask for help with.

And that ultimately is the crux of this issue, why this report was needed. I can’t speak for all autistic people but I can say that the majority of us struggle to ask for help when we need it and struggle even more to cope when we don’t get it.

We’re not asking for the world to change overnight, for every person in every healthcare establishment to suddenly become an expert in autism, we’re asking for the people who hold the purse strings to recognise that we , the autistic community, are a large (larger than you may think!) group of patients (and voters!) who need more support than is currently being provided.

We need to feel safe going into surgeries and hospitals; we need to know we’re not going to be belittled by receptionist who doesn’t understand our difficulties; that we’re not going to be dismissed by GPs who aren’t able to hear what we’re trying to communicate. We need to feel confident that we’re not going to get trapped on the mental health roundabout being passed pillar to post; only receiving crisis support when we have a complete breakdown.

We’re not asking for UNreasonable adjustments or a complete restructure of the NHS. To paraphrase a favourite film quote of mine "we’re just a community of people, standing in front of our representatives, asking them to help us"

Please, it’s taken so much effort from us just to get to this point, to finally be able to express what we need and ask for the help to get it. Please don’t let us down.

Thank you.

Parliament and Politicking

It's strange the way humans have evolved to be creatures that create hierarchy and then fight each other for positions within it by trading words and favours instead of spilling blood as our evolutionary ancestors would. 
Spending the afternoon in Westminster taking part in Autism related meetings has been an eye opener into the differing opinions across the society we live in. Hearing academics talk from a psychological/biological point of view being at such cross purposes with my view point as a person who is autistic every day of the week has left me feeling both deflated and pumped up to fight my corner. 
I don't ever profess to speak for the community I'm a part of, nor try to say that my experiences are in any way superior to others but I do swear that the work I am trying to do is for the right reasons and has an aim to stop others from experiencing the same pain and troubles that I have been and still am going through.
I know that politics is a hideously complex thing, where people and organisations that should be working together are bickering over who gets the last penny left in the treasury, but I find it incredible that some of the basic things that could help people like me still need to be spelled out and then enshrined in law to make sure people follow the directions they're given instead of wriggling out by doing the bare minimum to tick the box!
Autistic people don't need superchampions and specific leads in education, health, employment, housing, criminal justice. What we need is for ALL people involved in those departments at all levels to have a good decent knowledge of what Autism is, how it might cause issues for people and how to help resolve those issues.
I hope that over the next few months things that are works in progress will come to fruition and I hope this will help the community I am a part of, because we are a community and we have a voice, we just need to be listened to now.

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!

WORLD AUTISM AWARENESS DAY!!!

Is today a celebration or a campaign?


I'm honestly not sure and quite frankly am not bothering to chose! I treat WAAD as both a chance to express my passion for promoting awareness of Autism and to indulge my inner ego's desire to say 'yes I am doing well and I'm damn proud of it!'


The thing is, these two elements are so deeply intertwined and most of the world doesn't even see it; my need for validation that 'yes I am a functioning, society-contributing, independent adult' comes not from a place of vanity or hubris but from a place of loneliness and fear, a place that was born from the way the world treats the word 'Autism' and the overwhelming negativeness that Autistic people are subjected to.


I hope as we move forward in the 21st century we (as a species) can continue to grow and remember that were it not for the evolution of things like opposable thumbs and language that we would not have become the race we are today. I'm not saying that the Autistic brain is the new evolution of humanity, but is it so wrong to think that maybe, its an evolutionary response to the world we've created? Is the emergence of more common sensory issues directly linked to the massive expansion of things that demand our senses take notice?


I'm not talking about the recent growth of the technology word here but a more fundamental shift that occurred generations ago - the industrial revolution opened the door to loud, in-your-face, constant noises and smells. The world suddenly got a lot louder and with it came a change in what we saw, wore, smelt, tasted. Global communities sprang up sharing new exotic tastes, new fabrics and dyes came into public fashion, the need for marketing and advertising suddenly became apparent. Maybe I'm wrong, maybe I've misunderstood history, but the way I see it is that not too long ago (in an evolutionary sense) the world was quiet, calm and less busy. Now, its considered an achievement if you can find 'peace and quiet' for more than a few minutes!


I fully support the NAS's current 'Too Much Information' campaign; I whole heartedly agree that we need less overstimulation in the world. We're never going to stop dogs barking, babies crying or even (unfortunately) traffic being traffic, but maybe we can start to think about what is truly needed and what is surplus. Speaking as someone who working in the education field one of the first things I always talking about sensory-wise is how bad schools are for over stimulating children visually! I know OFSTED (cough *bastards* cough) love to see classroom walls covered in displays and information but this can be incredibly overwhelming for the Autistic mind - I actually got triggered into sensory overload from a primary school classroom once the walls were so busy! (And that's without mentioning the smell/sounds of the class pet in the corner, the school bell ringing, the children screaming outside on break!)


Its sad to think but these days I'm not sure I could cope with living in a big busy city like London, and that to me is one of the biggest problems I 'suffer' from. I was born in London, I love the city and have always intended to return there one day, maybe even after a stint living abroad somewhere like San Francisco or Boston, but I'm genuinely not sure if I would be able to cope with the constant overstimulation that those big cities generate. Certainly not alongside the stresses and issues that come with full-time work anyway. God knows its hard enough sometimes managing just living in a town - although in my defence I live next to an industrial estate and railway tracks!


I think ultimately the world as a concept has both grown and shrunk too fast for us as a species to keep up with, we exist now in society where I can speak to someone in Australia whilst eating food that originated in Asia, typing on piece of technology from America, and watching a rugby match being played in Europe! 4 generations back and my family didn't even know what electricity was!


If I could ask one thing of the world on World Autism Awareness Day it would be 'please stop stacking the deck against us' - we exist, we walk and work among you, please stop making our lives so much harder than they need to be.