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.

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.

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!!

Limbo land; waiting to know

Its 11pm on Thursday 23rd June 2016, the EU Referendum polls have been closed for an hour now and counting is happening in earnest around the country. We are now officially in the limbo between voting and results being know.


My anxiety levels have never been so out of control.


I hate the fact that I don't know what will happen tomorrow morning. I hate that I don't know how this is going to affect the country I love. I hate that I can't control how terrified I am of what might happen.


These are the moments when being Autistic really really sucks.


But, from the depths of my fog of fear and trepidation is emerging a new way of coping. Gone are the days when I could rely on alcohol, cynicism or fake apathy to get me through nights like this, instead I find myself reaching previously unknown levels of zen; I have done what I could and can do no more, I must now simply accept and wait.


I'm reminded in these moments of the harrowing line of dialogue from the end of James Cameron's Titanic "had nothing to do but wait... wait to die... wait to live... wait for an absolution... that would never come"


Tonight isn't anywhere near on a par with the events of April 14th 1912 but there is a sense of worlds being shaken, of lives changing in ways that cannot be comprehended yet, of the endless wait to see what morning brings.


I hope whatever the result that my wonderful, amazing, proud country can come together and accept the majority choice. I hope that we will never again see the scenes we saw in the summer of 2011 when parts of London were torn apart by riots. I hope that we remember how lucky we are to be given a choice in our future at all.


I hate not knowing, but I would hate not having a say more.

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.