We 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.