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

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.

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.

To do or not to do

Making the choice to do something that I know is going to cause me pain and trouble isn't always difficult. There are times when it's incredibly simple because I know that the short term issues from my autism and sensory issues are massively outweighed by how much I would regret NOT taking up the opportunity on offer.

This was completely true on Tuesday when, despite a work day from hell, I travelled into London to meet a friend for dinner. Keeping this arrangement was more important to me than the issues I was struggling with at the time for many reasons but mostly because it was a one-off experience we had booked to do. Nandos isn't often a good place for me to go as it's generally a veritable smorgasbord of sensory overload; most places with open kitchens are!

But getting to experience the Saracens 'Nandos Takeover' fundraising event was something I'd been excited about for a while and getting to catch up face to face with a friend I hadn't seen since my birthday in February was very important to me!

When it comes to trying to live a 'normal' life as an autistic person it can be really hard to get others to understand just why I'm apprehensive about a proposed activity or plan; NT folk don't have to think about the multitude of things I do to assess whether something is going to be worth while or not. A NT person doesn't have to consider whether having the discussion in the first place will be constructive or just an exercise in frustration.

My workplace is a classic example of this difficulty and how people just keep getting it wrong with me. They seem determined to "protect" me by not letting me be involved in the more 'fun' side of things like big events - wanting to make sure I'm not stressed because I "have a lot of work to get on with" (even though during those big loud events there's not a cats chance in hell I'll be able to concentrate on my work!) And yet the things I need them to think about they seem to stubbornly cling to this idea that if they just tell me to be ok that I will be!

I'm writing this from the passenger seat of the car I'm hiding out in. The staff team have come to a Falconry Centre for the day as part of some end of year wellbeing nonsense; a day of birds of prey and sporting activities. Lovely.

No consideration was given for how I might handle this scenario; in fact when I was first told just last week of the plan (having already got fairly wound up about not knowing what was going to be happening on the last day as it was being kept a secret) my gut reaction was absolute horror.

Now don't get me wrong, I love birds of prey, watching them soar above in the skies, listening to Sir David Attenborough or someone tell me all about their habits and rituals is fascinating to me, they are truly magnificent creatures that deserve a lot of respect.

They also make sounds that are like a spike being plunged through the front of my brain.

I warned my boss about this but still she insisted that I come along and "give it a go" - a typical response from a former PE teacher.

I could hear the screechy chattering sounds building in intensity as we approached, it didn't take long for me to turn tail and run for safety. Maybe I could have coped better had I not just spent close to an hour crammed into a cafe hut thing with 50 odd colleagues most of whom are naturally loud people.

So now I'm sat in a car for 90 minutes while my half of the staff team do the bird experience. Then my group will have their turn at the sporting activities; shooting, archery and laser clay pigeon shooting. In the middle of a farm. Lovely. More stuff I can't cope with. I suppose at least my main reason for not wanting to take part in those activities is more obvious to people; the bright blue muscle tape running up my neck from my shoulders is pretty conspicuous!

At least I had some warning about what today involved so I could prepare some what; my ear plugs are near by in case I need them, I have my ipod on and playing calming music, I have recovery snacks with me if needed, my stress aids are in my bag and I didn't drive myself here so I don't have to worry about being safe to drive home later!

I'm isolated, with a building headache and feeling a bit fed up with the situation. Sums up the whole bloody academic year quite frankly! Thank crunchie that the holidays begin tomorrow and I can get on with my work in peace over the next few weeks!

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.

An inspiring week

Everyone has weeks that are tough, weeks that you wish would end already or never have happened, weeks that just make life seem so grey and rubbish.

This was not one of those weeks for me.

I am so lucky to have the opportunities I do in my life; to be able to stand in front of a crowd in Westminster and have them listen to what I have to say, to be able to see my family so often, to be able to share moments with people I love, and to get to meet some truly inspirational people.

Meeting Henry Fraser at his incredible art exhibition 'Hand to Mouth' was one of the most significant moments of recent times for me; he is someone that doesn't just inspire me but reminds me of the important things in life - to focus on "what you can do, not what you cant do". To have the opportunity to get to thank him in person for being a continual source of positivity has made me reaffirm my vow to not get caught up in the negative of life, but to continue to find ways to see the strengths in disappointment and to improve as a person with every knock-back or failure.

This week has been a phenomenal one for finding hope for the future thanks to the wealth of sport on TV; witnessing Andy Murray win Wimbledon again, watching Chris Froome's brilliant descent sprint to the Yellow jersey, seeing Yates and Cav in the White and Green jerseys, all these marvellous things give me such enjoyment and passion for British sport again - let's cheer Froomey on to victory in Paris in 14 days and then its time to bring on Rio!!

More than anything I hope that the sense of positivity coming out of British sport rights now will help to lift this country out of the funk its been in recently and start to unite and heal our people; the world is in a sorry state right now, but as some wonderful people have reminded me lately - even the hardest of adversities can be overcome with the right mental attitude and a willingness to accept what cannot be changed.

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.

The consequences of a meltdown at work

We had a fire drill at 12.20pm today.


This was a rearranged one from last week - I had been told the original date/time and left the building 10 minutes in advance to ensure I didn't get caught in it (as I am allowed to do by our H&S officer) but when it got rearranged due to an unavoidable issue my only information was that they 'hoped to have it next Tuesday' - no confirmation, no time, and the first day back after a 4 day weekend . . . (I spent most of today thinking it was Monday, despite knowing yesterday was Easter Monday!)


So, its 12.15pm and I'm knee deep in a particularly tricky report I'm working on and quite frankly feeling fairly below par already as the weekend (being a family orientated one) was fairly tiring and I hadn't managed to get enough sleep Monday night as my brain kicked into overdrive at about midnight and didn't turn off til gone 3am!


12.20ish and the siren suddenly wails through the building.


Now, I'm actually pretty good at the first reaction part - I can compartmentalise my base reaction and squash it viciously whilst dealing with the 'getting out of the building' part but once outside all the rush of panic, sensory overload, claustrophobia (from coming down the stairs with a dozen other people) and general anxiety comes out in the form of hyperventilating and pre-meltdown behaviours emerging.


Its worth noting here that I'm incredibly lucky in working for the same organisation as my mother, and by sheer luck we were both working in the same building today so she was able to take care of me when I needed help with my recovery process.


The fact that my colleagues still don't seem to understand the implications of things like fire alarms on me is disappointing. Co-workers I encountered over the course of the afternoon seemed surprise that I was still suffering 2-3 hours after the drill, not realising that a post meltdown recovery can take hours. I actually never progressed into full meltdown as I retained a level of control during the incident but I was certainly on the very limit of my capacity for control and came very close to toppling over the edge into full blown meltdown at least twice.


It took me until nearly 8pm to feel fully 'normal' again this evening; only after eating junk food (dominos to the rescue) and taking a 2 hour nap on my sofa did I finally feel back to my baseline levels. I still don't know how I'll wake up feeling tomorrow - that will all depend on tonight's sleep quality.


The hardest part of the whole afternoon for me was trying to verbalise my pain to people - I have a multitude of different categories of headache but explaining the difference between 'dull top vice' and 'consistent mallet' to people can be interesting - especially when I'm tripping over my own tongue as exhaustion robs me of some of my fine motor control. I also lose control of some of my external 'masks' and allow my autism to show through more, become more abrupt and harsh with people and a lot more demonstrative of my displeasure - when you're in pain other people's feelings/opinions become a lot less important!


The tiredness is also a shock to a lot of people, they seem to think I can just 'shake off' a reaction and be fine 20 minutes later, they don't seem to understand that, a lot like a burn, sometimes the initial pain isn't the worst part and that the damage can still be developing over time. I'd like to see them moving at full pace when they have a brain that's occupied with self-preservation and healing.


The sad thing is that one day they will all realise what its like because a lot of what I describe my recovery process to be like is how my grandparents describe ageing - the frustration of not being able to think/move/react as quickly as before, the slipping of hand/eye coordination and motor control, the verbal mistakes, the brain 'blankness'.


Maybe one day research into Autism or brain conditions such as dementia or strokes may shed some light on how to help people like me in meltdown recovery. Until then I'll keep doing what I'm doing and try not to get myself fired in the process!

The A Word - thoughts and feelings

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


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


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


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


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


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


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


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

Rollercoaster week

What a week.

Its been Schools Autism Awareness Week for the past 5 days and I wish I could say I've seen much evidence of it but it seems to have largely passed my local area by, even my own school didn't really bother with it much except to allow me to run an afternoon/evening conference on Wednesday.

Despite the numbers of children diagnosed each year climbing and the ever increasing importance of autism awareness and reasonable adjustments being needed it still feels like a lot of school staff, employers, colleagues, general public don't really give two figs.

I worked incredibly hard to pull off our conference on Wednesday and while I'm very proud of my own achievements in that regard, I do feel somewhat let down by the attitude of my colleagues towards my event and the campaign in general - yet again autism is something that has been dismissed as 'not a priority' which disappoints me.

Its a pervading attitude that I worry is indicative of the way non-autistic people think of autism in general; its too easy for people to 'pay lip service' for a short while then go straight back to carrying on as they always had been with no regard for what we live with every minute of every day. Its not like my sensory issues come with a dial or pause button that I can utilise when it suits someone else.

They certainly wouldn't be allowed to 'get away' with 'forgetting' about the specific needs of a diabetic/nut allergy sufferer/paraplegic/blind person - in fact I'm pretty sure sometimes more effort goes into be considerate of my colleagues gluten/wheat/dairy intolerances than goes in to making sure I've got a sensory environment that wont give me an overload migraine every few hours!

Anyway, stressful week over - its time to crack open a bottle of wine, watch The Last Leg and enjoy the thought that I have nothing planned for the next 48 hours apart from watching the England team lift the Six Nations trophy!! (Lets make it a Grand Slam please boys?!)