Thursday, 29 March 2018

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.

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