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.

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.

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.