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]

My city, my heart

We all knew it would happen one day, deep in our hearts we'd begun to consider it an inevitable part of modern life, 'when' not 'if' and a cold dread of waiting to see just how bad the final toll will be.

My heart aches for my city. I may not have lived there since 1995 but London will always and forever be my city; I learnt to count by stops on the Tube, to appreciate nature by time spent in the royal parks, to love history by regular trips to the museums, palace, tower. I lived and breathed the richness of our culture through my neighbours, classmates and family friends.

I've spent a fair amount of time in the Westminster corner of London. Long before my involvement in the Westminster Autism Commission I was familiar with the area, having spent many hours wandering the circuit of The Mall, Whitehall and Birdcage Walk. Its a part of London that gives me a deep sense of connection like no other, where I feel really at home amongst our wonderful history.

I don't need to 'hope' that London will heal and recover from this tragedy, I know it will. I know London and I know Londoners, this will hurt and it will resonate but it will not defeat, it will not divide. London does not cower, London does not flee, we put the kettle on and get on with life, we always have. The Blitz didn't defeat us, the IRA attacks of the 80s and 90s didn't defeat us, the 7/7 attacks in 2005 didn't defeat us. A single man with a car and a knife will not defeat us.

Yesterday I cried for my city, today I miss my city, tomorrow I will travel to my city. And for the rest of my life I will love and be proud of my city.


#LondonForever

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.

To cut your losses or to keep hoping?

I've been thinking a lot lately about the conundrum of when to continue trying for something unlikely and when to cut your loses and give up.

It's been playing in my mind because of work issues but I've been inspired in my decision making by recent comments by Alex Goode and Chris Ashton.

Goode's interview about being dropped by England was heart wrenching in the fact that it's obvious how much he wants to get back in the shirt, how much he's prepared to sacrifice to be the best he can be and by how much it hurts when it doesn't happen. He's not getting much hope from Camp England right now but he's not ready to walk away from the dream and chase the money instead.

Because, of course, this is what many say Ashton has done.

He hasn't though.

What Chris Ashton has done has been pragmatic and put sense over heart. I was fortunate enough to speak to him last week and you could see in every part of his body language when people mention the Toulon move how much he is struggling with the choice he has made. He didn't want to leave Saracens but he had to make a decision. His situation is not like Goode's. It's not a case of trying and proving that he deserves another shot at the white shirt. Ashton has been through too much with the RFU, the media and the fickle nature of public opinion. His career in this country is forever linked to the disciplinary panels and their outcomes.

I truly believe that the 'biting' incident that occurred during the Northampton game was a cynical play by Saints players to get Ashton in trouble. If you put your arm forcefully up to someone's mouth it's always likely to end certain ways: when a person, any person, feels in danger (like when their airway is being impeded) they react in manners not nessecarily in keeping with their character. Opening the mouth to increase the ability to breathe is a natural reaction to it being covered, and one the Saints player used to his full advantage.

I understand why Ashton has decided that his time playing in this country is over. Would he ever get a fair hearing again should anything else happen? No, I don't think he would, I don't think he did back in the autumn quite frankly.

So I get why he's made the choice he has and as a supporter of the team and the individuals that make up that team I will support his choice and wish him all the best in the world in Toulon.

I hope he, his wife and their child have the best of times living out in France for as long as he is there.

I hope, when all is said and done and Ashton retires, that he comes home to Saracens and can act as a mentor to the academy youngsters who may not realise just how easily the public, media and RFU can turn on a player.

I hope he can pass on to the future the wisdom that his past has taught him.

I hope he can come back with a smile on his face for fond memories and a full and happy career to look back on.

I hope there is still hope for both Chris Ashton and Alex Goode. They both deserve it.


I hope I find some hope soon.

Game over

This weekend has been a difficult one for me. A disappointing one because yet again I let my expectations get too high.

It's hard to explain, particularly when people have this curious view of autistic folks like me not having empathy or emotions, but I feel very deeply and can get majorly affected by others actions or inactions. I also can't stand getting caught in silly hostile 'politics' and nasty cliques.

I try so hard in my life to not let things affect me and yet time and time again I'm finding myself in these situations. The kind where I end up in tears and in meltdown mode because I don't know how to handle things.

My gut reaction to this weekend is to walk away from everything. From both SOT and the SSA, from my 30 games challenge, from the Saracens in general.

I hate myself for reacting in such a way, I know I need to take a step back and think pragmatically about everything but it's hard to do that when your memories are tied so intrinsically to your emotions.

I understand in my brain that the team don't have to come round and interact with the fans, I know that they know nothing of this stupid pettiness between the two groups and I know that I shouldn't expect more than just a game of rugby when I go to a match. But it still hurts to see the team go to the other corner of the pitch to say hi to the fans there, to see them look at the flag we were holding high and merely applaude and walk away. It shouldn't hurt, I should be more mature than this, but right now I feel like the kid who didn't get invited to the party again, the kid who can't find anyone to sit with at lunchtime, the kid who doesn't want to go to school anymore because it's so miserable.

I've worked too damn hard to get away from being that kid. I did my time as that child when I was in school and I refuse to do it again as an adult.

I need to stop setting my expectations too high, learn to want to be happy with "okay" and stop thinking that two "greats" in a row will mean anything changes. And to stop believing things people say just because they're saying something I want to hear/read. It's time to face the reality of life again after being in a bubble for a while. Show up, watch the game, go home.

I will make 30 games for this challenge. And then I will walk away with my head held high, leaving on my terms. It's about self-protection you see?

Thirty years and six nations!

So endeth the manic period of my life that was my 30th birthday, and it couldn't have ended better! Well, okay, it would have been a bit better if England hadn't been flummoxed by the Azzurri's tactics for so long and if Faz had a bit more accurate a day at the tee!


A day out at HQ is always something a bit special; the very nature of game day is just brilliant fun, the streets between the tube station and the stadium lined with stalls like the biggest most-British street party ever!


I'd never been lucky enough to go to an England test match before, my only experience of the national team being a Baa-Baas game a few years ago. Its unreal. I thought I'd got the full HQ experience when I went to the Premiership final back in May but my god do they go to town when the Nations roll up!


Of course there were times I struggled with the day, its part and parcel of being autistic that eventually the sensory aspect will catch up with me and have consequences but a day like Sunday is one that is completely worth it. All in all, despite the drunken idiot sat next to me (not my father, the other side!) and the slightly bizarre nature of the game, I had the most incredible end to my 30th birthday week - note 'week' not 'celebration' - that's going to be rolling on until the '30 Games for 30 Birthdays' is completed in May!

Autism Fatigue vs lots of exciting plans!

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

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

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

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

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

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