Archives for posts with tag: fiona o’leary

It takes an extraordinary person to go after a global pseudoscience network and dismantle it, piece by piece. The network involved is the Genesis II cult, whose schtick has been to promise “miracle” cures to parents of autistic children. If they would only drink bleach, or have it forced up their rectums, their children would be cured of autism. These people have made their fortunes by selling industrial bleach to vulnerable parents. They couldn’t care less who got hurt in the process. Despite negative publicity and widespread condemnation, they seemed unstoppable. Business is business, right?

Then someone – a parent of autistic children – took them on. Working with concerned parents in other countries, she got the media to take note. By contacting the papers, independent journalists, TV stations, radio stations and networks, she brought the church’s tactics into the light. Documentaries were commissioned, special investigations produced, exposing Genesis II for who they were. At this time, the cult and their associates are in disarray. The light of publicity has not been kind to them. Some of the perpetrators are in prison, and more criminal convictions may soon follow.

The person who helped to make this happen is Fiona O’Leary. Fiona is an extraordinary person who I’m proud to know. Based in West Cork in Ireland, Fiona spends hours each day following up leads, talking to people around the world, reaching out to parents and victims – all the while getting the message out about the bleacher cult and their tactics. Fiona herself is on the autistic spectrum, which perhaps contributes to her tenacity. She is courageous to a fault; she has a strong sense of justice and she won’t easily give up.

Enter Andrew Wakefield. Wakefield is notorious in pseudoscience circles, having been responsible for perhaps the greatest health scare in recent memory. The story of Andrew Wakefield is as bad a tale of professional misconduct as it is possible to find. After the publication of a now discredited and retracted paper that associated the MMR vaccine with bowel and brain damage, a public health crisis emerged that resulted in old-diseases making an unwelcome return, with avoidable injury and needless deaths following in their wake. Wakefield’s medical license was revoked after he failed to disclose financial conflicts of interest and ethics violations.

Wakefield has been working hard to restore his disgraced reputation. His latest attempt is “Vaxxed“, a documentary that attempts to create a parallel history of what really happened, while scaring the bejesus out of parents. The Guardian noted how the documentary ignores contradictory evidence, while rehashing utterly discredited claims. The documentary film-maker Penny Lane commented “this film is not some sort of disinterested investigation into the ‘vaccines cause autism’ hoax; this film is directed by the person who perpetuated the hoax.” The Washington Post said it should come with a warning label: “May cause irrational anxiety, especially if taken with an empty head.” Variety Magazine called it a “scientifically dubious hodgepodge of free-floating paranoia, heart-rending imagery and anti-Big Pharma conspiracy mongering.” 

As far as I am aware, none of these highly reviewers received a threat of legal action from the producers of the movie. However, last week, Fiona O’Leary did. According to the legal notice sent to Fiona “We will ask for punitive damages and financial compensation for all losses to our business directly resulting from your actions.”

What utter cowards these people are. Fiona was within her rights to alert people to the vast problems inherent in the documentary – the facts left unsaid, the real story about what Wakefield had done, the treatment of his critics. “Vaxxed” is a piece of dangerous propaganda with a direct public health impact. By attempting to rekindle the mythical link between vaccines and autism, it puts needless guilt on parents of autistic children, implying – when there is no empirical evidence to back it up – that somehow they are responsible for what happened. If you were a parent and you knew the damage that such allegations could wreak, wouldn’t you be anxious to criticise them too? Clearly, Cinema Libre, like a classic bully, prefer to go for the small people first.

So, instead of accounting for the massive problems in their worthless and dangerous pseudo-documentary, Cinema Libre took a campaigner with a distinguished record of defending autistic parents and they threatened her with legal action. Honestly, I hope this move backfires on them utterly. They deserve every piece of bad publicity they get.

Further reading:

Makers of ‘Vaxxed’ Threaten Lawsuit Over Valid Criticism

Vaxxed distributor threatened Fiona O’Leary – they’re afraid of facts

Cinema Libre Studios and Andrew Wakefield’s Vaxxed team threaten autistic autism mom

http://www.harpocratesspeaks.com/2016/07/cinema-libre-bullies-critics.html

US film studio threatens to sue Cork autism-rights advocate

 

Fiona O'LearyWe were delighted to host Fiona O’Leary last Friday in Blackrock Castle. Fiona is a prominent campaigner on the issue of childhood autism. Over the past few years, she has proven to be a thorn in the side of groups who profess to be able to ‘cure’ the condition. She has been the major force behind a number of exposés and media investigations across Europe and the US, resulting in the closing down of lucrative illegal operations selling highly dangerous medications to the parents of autistic children. Fiona is tireless in her energy, passion and dedication. She attributes this to her own experience on the autistic spectrum – almost unable to anything in half measures.

Fiona gave a great talk – lucid, wide-ranging and often shocking. She gave us an insight into the activities of organisations such as the Genesis II Church, who claim that industrial bleach can cure Autism, or David Noakes, who sells a blood based product called GCMaF to parents of autistic kids. These people have been helped in Ireland by health-care professionals, some of which are likely to get debarred as a result of Fiona’s work.

Rather than recap the talk in its entirety, here are some of my take-aways.

Autism is not a disease. Talking about it as if it were a “disease” that can be “cured” is misleading and insulting towards people with autism and their families. Unfortunately, there is a view out there that a cure exists, but big pharma or the medical establishment are actively working to suppress it from the public. The groups selling magic potions such as GCMaF or MMS seem to see themselves as plucky counter-revolutionaries who are in a fight with the establishment to get the truth out. It’s a very seductive narrative, but it doesn’t quite cover the fact that their purported remedies are both useless and dangerous. They are also in the business of selling false hope to vulnerable families.

Autism is not the fault of the parents. Some observers, harking back to the “refigerator parent” hypothesis, appear to prefer a narrative that kids who manifest autistic characteristics, do so because of a lack of affection in their earlier years. This hypothesis has long been debunked, yet prominent commentators still prefer nurture to nature.

The treatment of autism in some countries lags far behind international best practice. France, in particular, has been called out repeatedly for inhumane treatment of autistic kids. At the talk on Friday night was a family who fled the country in order to protect their autistic son. The people of France will have some considerable accounting to do in the years to come.

Autism is not a recent phenomenon. The huge rise in the incidence of autism diagnoses worldwide is mainly explicable through better detection and reporting over the past 30 years. Before movies such as Rainman raised the condition to public consciousness in the 1980’s, it was often misdiagnosed as a psychiatric illness for which institutionalisation seemed to be the only ready answer. If there are silver linings to this story, it is that autistic people are no longer confined to the shadows, no longer considered to be a source of shame to their parents.

Vaccines do not cause autism. Multiple scientific studies have now confirmed that there is no link between the two. However, well organised groups – a sizeable percentage of the autism advocacy community – dismiss the evidence, preferring instead to yell “conspiracy”.

Autism needs to be considered a part of the diverse human spectrum. This, ultimately, is what Fiona’s message was all about. Just like sexual preference, skin colour, eye shape, curly hair and male pattern baldness, it’s part of who we are and what makes us different. It can be debilitating and exhausting but the answer does not lie in paradigms that talk about cures and blame. Funding and support is required to enhance the lives of autistic people, so they can live happy, worthwhile lives.

There is a war going on within the autism world. The autism advocacy world is marred by infighting, verbal abuse, threats and character assassination. A huge section of the movement has embraced conspiracism over evidence, logic and critical thinking. The only weapons in their arsenal are emotion, anecdotes and bullying. In doing so, they are convincing none of the people who actually matter. Governments, philanthropists, foundations, trusts, charities and other non-governmental donors, who prefer well reasoned and well researched cases, are receiving mixed messages from advocacy groups. They may well be persuaded in the end to invest their resources elsewhere. How much progress has been wasted while autism advocacy fights itself to a stand-still over vaccines and big pharma suspicions and damaging concoctions such as MMS? There is a need, I think, for campaigners to work together and explore common ground, even if they have disagreements on certain issues. . Critically, they need to engage positively with the scientific community. It’s a Herculean task, akin to squaring the circle, but I don’t see an easy alternative. Until the advocates start basing their campaigns on the science, many kids and their families will not get the quality of life they deserve.

I want to thank Fiona and Tim. It must seem that they are fighting against the tide at times, such is the vitriol directed against her and her family. But it’s a worthwhile cause. The sidelining of the fanatics and the creation of space for more reasonable engagement is an important step in giving these families the support they need.

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