Friday 22 July 2016

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!

Monday 11 July 2016

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.

Sunday 10 July 2016

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.

Monday 4 July 2016

Taking over Westminster - one speech at a time!

When I first joined the Westminster Autism Commission last year I had no way of knowing just what a bizarre and unusual predicament the hallowed halls would find themselves in by the time we came to launch our first inquiry report!


Today was a day where many of us spoke of change and the need for more to be done, yet just a few corridors away both sides of the benches were in turmoil, leadership challenges and bids being made, deals being whispered about yet not truly brokered. Our whole country is locked in a limbo-like existence where jokes about the twitter-sphere asking 'who is actually running the country at the moment?' and 'is there anyone left who hasn't resigned from/been appointed to the shadow cabinet?'


My way of coping with this strange British type of chaos is simply to retweet the jokes I find amusing and watch Wimbledon instead. Well, when Le Tour isn't on that is.


The thing is though, the more I hear about what is going on in Westminster right now the more I worry that one day I will have to choose a devil to jump in bed with. I've found myself captivated by the notion of becoming an MP one day, but to realise this dream I'm likely going to have to pick between being Tory or Labour, the devil or the deep blue sea so to speak.


But why would I want to be a part of such nastiness? Of such intensive backstabbing and hushed voice dirty deals. I've probably left it too late anyway - I didn't go to Eton OR Oxbridge so my chances are pretty scuppered to begin with, definitely more so by not joining a 'young {insert party} society' when at university.


Still, even with all that against me I was given a microphone and a captive audience today to speak to so my dream may yet live on! Then again if things carry on the way they are going who knows what our democratic government may look like in a few years time!!