Autism Speaks and it's influence on the UK (and the world)



UK readers, or indeed anyone outside of the US might be wondering about the relevance of Autism Speaks, an American Charity, to them?

If you've read my article on the Autism Speaks 'Light it up blue' Facebook frame called 'If you Light it up Blue for Autism, you're supporting Autism Speaks and Autism Speaks doesn't support Autism...' you'll have a potted history of who they are and what they do, or more importantly, don't do, for Autistic people. If you haven't read it and wish to know exactly how Autism Speaks is harming Autistic adults, children and their families, please go check it out.

You might be surprised to know exactly what influence, both direct and indirectly, Autism Speaks has had on UK Governmental policy on Health and specifically Autism. It's really quite scary. And if they can do this in one country, how do you know they haven't done this in yours...

***Updated 06/01/2018***

What does it matter to us when they are an American organisation?

Well first things first I want to talk about those Facebook Frames the article i mentioned above was talking about (Seriously, go and read it!) That article was based on a Facebook post I made around the month of April last year. Why April?  It's Autism Awareness Month of course.

A lot of the Autism Speaks frames were being shared by Brits and it was pissing me off.  Not because i thought all my friends and friends of friends and random people i don't know were all being callous bastards, but because I was positive the majority of them had seen the word 'Autism' and thought they'd do something helpful.

I'm sure those same helpful Brits would be delighted to know who they were inadvertently supporting while thinking they were creating awareness for Autism (This is sarcasm by the way). If i thought for a second that any of my Friends and Family believed wholeheartedly in the message at the heart of Autism Speaks, they wouldn't be my Friends and Family any more.

So, Facebook frames aside.  Lets travel back in time to 2004...

Autism Speaks UK was set up in 2004 as a partner to it's sister charity: Autism Speaks, with the help of Dame "Steve" Shirley, a Philanthropist and early member of the original National Autistic Society board.  She'd previously established the Dame Shirley Foundation in 1996, which had spent millions funding research into Autism, including that of Professor Simon Baron-Cohen.

It was originally meant as a research group, intending on working on Autism Speaks funded human genome project (I wonder why), it's not like Autism Speaks to seek a cure now is it...  There were streams of funding available in the UK and Europe that were not available to an American Charity or research Institution, so they set up a British version.

Dame Shirley gave the organisation validation and credibility and, more importantly a direct channel to the echelons of power not only with the UK government, but also the business industry.

I can't comment on Dame Shirley's personal views of Autism.  She'd been on the board of the National Autistic Society when it was blundering around in the dark in the 1960's and it is hard not to imagine that her views may have an air of... Dinosaur... to them.  I may be being harsh on her, but then again, she did team up with Autism Speaks...

Autism Speaks UK rumbled on, with Dame Shirley hobnobbing with members of Parliament at dinners and lobbyist events and in 2007, she got the chance to talk before the House of Commons, with two Oxford researchers leading the Autism Genome Project.

Interestingly, during this speech she made reference to "...the active role UK researchers are playing in a global epidemiological network..."

Wait.

Back up there.

Epidemiological network?

Now forgive me, I was taken aback to hear these words spoken at the seat of the UK Government in front of MPs, Doctors, Teachers and parents...  For anyone who isn't sure what this means or why i was shocked, i Googled it for you:


Disease... Disease... Disease... Infection... Outbreak...Global infectious disease outbreak...

Did I miss anything here?  We're talking about Autism still, right?

Anyway, here's a juicy press release from the Autism Speaks UK website:




Autism Speaks UK continued to rumble on, chipping away at the Human Genome project, edging closer to wiping us infectious disease ridden Autistics off the planet when, in 2008, an amazing thing occurred.  Royalty deigned to visit.

In 2008 Bob Wright and Suzanne Wright, the founders of Autism Speaks, the King and Queen of Autism USA, came to London.  And what a whirlwind few days of schmoozing and back-scratching they had.

First up was a cosy meeting with Sarah Brown (Wife of then Prime Minister, Gordon Brown) and Maggie Darling (Wife of then Chancellor of the Exchequer, Alistair Darling).  Mrs Brown was then and still is an Autism Advocate (I use the term loosely) and had previously attended a breakfast put on by Autism Speaks for the UN in New York.  So herself and the Wrights were on speaking terms at least.


They then went on to have a meeting with MP Angela Browning. Yes, the same Angela Browning who proposed the legislation for the Autism Bill, the same Angela Browning who was the former President of the National Autistic Society, the same Angela Browning who became Baroness Angela Browning in 2010. 

That was followed up with a working lunch hosted by Baroness Pola Uddin (who claimed £125,000 of the taxpayers money in expenses and was barred from the House of Lords in 2011 for 18months and has never paid it back), along with 6 un-named MPs.  Un-named because there is no record of who attended...


The Wrights then finished their day with a meeting with Prime-Minister in waiting, David Cameron.

Most of the rest of their visit to the UK was spent in and around the Tree House School.  The Tree house trust was formed in 1997 by a group of parents including the Author, Nick Hornby.  The trust formed into the national charity, Ambitious about Autism in 2010.  The school has now become a centre for ABA (Applied Behavioural Analysis), while the trust was renamed Ambitious about Autism and now controls ABA colleges and offers training packages and research all based on around ABA.  Funnily enough, a lot of Ambitious about Autism echoes Autism Speaks.  They have no Autistics running the joint, they support abusive therapeutic methods like ABA. They have celebrity Ambassadors and two of their Patrons are John Bercow, the Speaker of the House of Commons and his wife Sally.

Here's a lovely video of Sally and John talking on the Lorraine show on ITV about their child 'with' Autism and how they knew something was 'wrong' with him, how Sally raised £100000 for Autism. By Autism, they mean Ambitious about Autism, which isn't Autism last time I checked. Please note how Lorraine repeatedly says about Autistic children "Acting up" then saying "Oops I didn't mean that"


It was nice that the message was so on point, Ala Autism Speaks.  Sally and John didn't send their son to the Treehouse School for a nice spot of ABA therapy, by the way, they're just happy to promote it for other people's children.

If you want to learn a little about ABA head on over to Spectrum News and their article: 'The controversy over autism’s most common therapy'

or look at The Suburban Autistics piece entitled: ''Real Science' and ABA.'

Or have a read of Amy Sequenzia and her beautifully emotional article for the Autistic Women's Network, 'My thoughts on ABA'

Let's skip forward again, this time to 2009 where Autism Speaks UK president Dame Shirley was named Ambassador for Giving and Philanthropy, where she would be advising the Government on how to facilitate and encourage giving. (Or perhaps how to more frequently and easily let lobbyists hand bribes over)...

Also in 2009, guess who came back!  Yep, two years in a row of lobbying and schmoozing MPs just wasn't enough, they had to be entertained by the Prime Minister for a third time, but this time throw in the then current President of the National Autistic Society and Professor Simon Baron-Cohen, the leading light in British Autism (massively bankrolled by Dame Shirley)...



So here are the founders of Autism Speaks, an American charity, this entity that was created to cure what they saw as a disease, who go to great lengths to spread this negative message about the foreboding monster called Autism, hobnobbing on a yearly basis with the policy makers, the proposers and the legislators of British government.  Find that uncomfortable?  I know I do.

In late 2009 we find there is trouble afoot.  Autism Speaks USA decided to run a lovely advert.  I mentioned it in the other Article, but in case you need a reminder:


This advert seemed to cause a rift in Autism Speaks land.  It is believed that many felt that the decision to make it was overplaying their hand a little.  It was too obviously menacing, too obvious in its message.  Autistic Advocates came out in force and publicly lambasted it. So, Autism Speaks UK said adios to Autism Speaks USA and completely re-branded, now naming itself Autistica. With Dame Shirley no longer on the board...

An interesting note to point out is that if you check Dame Shirley's Wikipedia page and her personal website (both of which i have linked above), there is not a single mention of Autism Speaks UK.  It's like she genetically manipulated it to make it look like Autism Speaks UK didn't happen, exactly like the charity she spearheaded for five years was trying to genetically manipulate Autism into not existing.

Dame Shirley though has never disappeared, unlike her stint at Autism Speaks UK, in fact she has continued to be involved in Autism at the highest levels in the UK.

Her philanthropy Foundation (The Shirley Foundation) has funded ABA schools in New York among other things, but most recently has been revealed as the driver and funder of the Autism Task Force, an Autistic run organisation set up to make changes in Autism policy in the UK.

This concerns me greatly, not just because Dame Shirley has a background in Autism that she has tried her best to erase, but also because Dame Shirley was the founder of the UK branch of the most anti-Autistic organisation on the planet.  Not only that though, but because Dame Shirley has been so influential in Governmental policy on Autism - While joining forces with someone like Bob Wright, who vehemently hates Autism and set up Autism Speaks to find a cure. There's also the fact that her philanthropy Foundation supports schools who use ABA therapies, which of course are vehemently opposed and abhorred by the Autistic Community.

Another really troubling aspect is that she had a double page spread in the Daily Mail several years ago where it announced Dame Shirley wanted to kill her Autistic child.  She's since gone on to release a book about her life and hides the fact on the description that it is mostly about 'her struggle' with her Autistic child (Probably because she didn't want to draw negative attention from the Autistic Community.

What's more terrifying is that only seven months ago she gave a lecture at the Royal Institution promoting ABA and the use of ABA based therapies at her Autism School.

The biggest thing that scares me about Dame Shirley, her influence over policy and government is that the narrative of Autism is still being dictated by those who are not Autistic and couldn't be further away from being reclaimed by Autistic people.

The Non-Autistics are "Allowing" (A direct quote from the inaugural speech of the Autism Task-force, again, funded by The Shirley Foundation) the Autistic people to have a say, while hovering hawkishly above in a position of power. Funding of course can be pulled at any time.  Political winds may change, but the whispers blown into the ears of the unwitting subservient are more powerful.

Nowadays, Autistica is no longer connected to Autism Speaks. 

I mean, it has similar issues as Autism Speaks in that there is no Autistic involvement at board level, beyond their Science Director and it's still doing what Autism Speaks set it up to do in the first place, which was sucking in grants, but Autistica has become much more favourable to Autistic people, is involving Autistic people in it's research  and the direction of it's research and is starting to promote Autistic voices. 

Admittedly they appear to have changed as an organisation, an awful lot in a few years.  There are still several sticking points though, in that they are still chaired by Dame Shirley, their biggest funder is is... Yep, The Shirley Foundation..., but how much of Autistica's running and focus is directed by the rhetoric that got Dame Shirley where she is today, remains to be seen.

My trust in them has improved greatly, i converse fairly regularly with their team over social media and have agreed recently to become part of of their Insights programme, where Autistic people have a say in the direction of the research they fund.  My trust in them is still fairly cagey, but it does look promising.

Autism Speaks has created the 'Cure Culture' that exists today, it was built on the premise that Vaccines cause Autism and did more to disperse that myth than any other entity on the planet.

They are the creatures that enable anti-vaxxers into meetings with Prime Ministers.

From Autism Speaks' supporters was born MMS or Miracle Mineral Solution (MMS is the art of squirting bleach solutions up your child arse so that they shit out their stomach lining as the parents have been led to believe their children have been infected with Autism inducing parasites.  So when the stomach lining comes out, the parents are delighted because they think it's the parasite...)

You can find out about MMS by reading The Guardian's article called 'The fake cures for Autism that can prove deadly'

Or, Huffpost's article by Todd Drezner, entitled 'The curious case of Autism and MMS'

Or, you can even read about how it's not just happening in the United States by reading about MMS and bleaching in Leeds

Or watching this BBC news report:

All of which has prompted the National Autistic Society to raise an eyebrow and post this page on 'So Called Cures'

You can thank Autism Speaks for the prevalence of Biomedicine and the connected treatments sold by 'charities' like Treat Autism.  Here's their 'about' page, does it read like a Pyramid Scheme to anyone else, or just me:

Like I said, Treating Autism promote Biomedical treatments which you can read all about in an article by David Gorski called 'The autism “biomed” movement: Uncontrolled and unethical experimentation on autistic children"

Biomedical treatments are not based on any sort of science, other than that dreamed up in a kitchen by a bored kid and a cupboard full of ingredients.  George's Marvellous Medicine holds about as about as much Scientific value as any Biomedical treatment.  Basically you won't find a description of what a biomedical treatment is (Go on, Google it, I dare you), only what it does, which is basically cure Autism.  Except obviously it doesn't, it makes you part with cash and hand it over to the Snake Oil Salesman in the lab coat. They talk about supplements and dietary additives and especially Casein, which was dismissed years ago as being connected with Autism.

I never thought I'd say this, but thank the Daily Mail for being the voice of reason with 'The Great Autism rip-off'

Biomedical treatments were born out of the Anti-Vaccination Movement or Vaxxers.  Those guys sure do love them some Andrew Wakefield.  And who was the biggest proponent of the lie that Vaccines cause Autism?  Why Autism Speaks...

And also (as i mentioned way back up this now, monstrous article), cultivated in the heartlands of Autism Speaks, have bred an army of salivating, obsessive monsters that are the main promoters of ABA and pretty much responsible for how successful it has become.

ABA which is now being offered by CAMHS.  It pays well, you know.  As well as the advent of ABA dedicated schools up and down the country, including one in Maidenhead, Forest Bridge, which Theresa May visited personally and backed publicly. Which was lovely for her I'm sure.  She'll probably be long dead before the next batch of ABA induced PTSDers all kill themselves.

So, you might say, all this was years ago now.

Well like i pointed out above, Autism Speaks have had a direct (and negative) impact on British government and its attitude towards Autism, that much is pretty undeniable.  Whether they have directly influenced policy is another thing altogether, but to be honest, it wouldn't surprise me.

They have left a legacy of a negative Autistic narrative and also this malignant cure culture, which still persists to this day and has bred so many companies and charities which prey on desperate parents.  Desperate because there are no support strategies in place because the Government cut them all, apart from ABA of course. There's always room for ABA. Even when Autistic people ask for it to be stopped...

Not only this though, but they're back.  I mean literally, back in the UK

Recently, just a few weeks ago in fact (at the time of writing), with actor Matthew McConaughey, Autism Speaks has set up a Corporate Partnership with Kiehl's and started promoting it in the UK. You know, the Skincare company:




Or, as I like to call them now:

So yeah, an American firm has teamed up with an American charity and an American film star to talk about Autism, in the UK.  You can find Kiehl's Autism Speaks post on their page by clicking this link, in the meantime here's a screen-shot:


Let's not, eh...

You can see the backlash Mr McConaughey got, on one twitter post about his new relationship with Kiehl's and Autism Speaks and you can see the complete an utter lack of response from him or whoever runs his Twitter account.

You'll see also, if you go to the Kiehl's Facebook post I cited above, the complete lack of response by them when questioned by Autistic people, including myself, about the fact that Autism Speaks harms us, beyond the standard copy paste reply. "We were aware of the problems, but Autism Speaks have changed their message"

Blurgh... I mean seriously.  For years Autism Speaks have served their own interest and ignored Autistic people when hunting for a cure.  But now they are going to stop looking for a cure and are going to listen to Autistic people, while still ignoring them.  Just like Kiehl's are doing.

Where do I get my info?  Why the Autism Speaks website... It's not hidden. It's all in plain view for anyone who wants to find it.

I don't like Conspiracy Theories, but you have to admit, that since the arrival in this country of Autism Speaks, a lot of crap has gone on and the message that Autistic people need to be heard couldn't be further away.  It's exhausting every day writing the same things, saying the same things, repeating over and over the same messages that parent's of Autistic children don't seem to want to hear. They don't want to accept that their children are different.  That a bunch of strangers can identify with these kids more than their own parents. That their children will grow up to be us...

Autism Speaks is a real life threat for Autistics and parents of Autistics and everyone should be aware of it, all over the world.

For the UK especially, it's legacy lives on, carried and flag waved by Dame Shirley, her Foundation and all the organisations that have benefitted from using ABA and promoting snake-oil cures because of the path that Autism Speaks paved.  That their ideology is still influencing policy in countries separate to America, as well as America, either directly or indirectly after all this time is a terrifying prospect.

It scares me that ABA and Autism are being spoken of in the same breath at the Highest levels of British Government, across the NHS and that it is being done subversively and quietly.  That the NHS is currently costing using ABA as a standard front line therapy for all newly and currently diagnosed children in the UK. Driven by fundamentalists who are challenged only by Autistic people and driven by legitimate organisations like the Caldwell Charity and Ambitious about Autism.

I fear for the future of Autistic people, at a time when more and more adults and children are being diagnosed and recognised, that many more are being shunned and turned away because the services can't cope, that schools are being led down the path of failing Autistic children - I fear that this will lead to further reprisals, further therapies, more chance to blame our mental health and punish us for that, further cycles of Masking, of burnout, of early death - All only 'treatable' by therapies that are cheap to deliver wholesale as a one-size-fits-all 'cure', that end up doing more and more harm..

It scares me.

It should scare you too.

What do we do?

We keep talking.

We keep fighting.

We keep yelling and shouting.

We stand up for our Autistic family, for those who cannot speak we shout louder still.

We ignore those who would silence us, dismiss us.

We sweat blood and tears to get the Acceptance we deserve.

And we do it Autistically.

We don't need to be cured, we just need to be heard.

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