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?!?!

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.