I guess I should be surprised that my diary’s made it this far without confronting the issue of treatment, because there seem to be two types of parent working with the Spectrum: those who accept the diagnosis as a lifelong fait accompli and who solely rely on behavioural techniques, and those who seek a solution through alternative therapies. The first type believe their children are biologically (and thus inalterably) ’atypical’, while the second believe their kids are also chronically ill and can thus be partially cured.
There are medical professionals on both sides who claim to know what’s best for your child. Are the doctors who advocate a purely behavioural approach part of an obsolete medical orthodoxy in thrall to pharmaceutical companies with no product to sell and so nothing, as yet, to gain? Or are the doctors pushing more radical treatments just playing on the hopes & fears of parents desperate for answers? Both will pepper their websites with testimonials from tearfully grateful parents willing to shout ‘We’ve Got Our Boy Back!’ from the rooftops, but no one treatment seems to be consistently successful. The Spectrum is so wide that what works for one may never work for another. Only one thing is certain: neither side knows what really causes Autism.
Speculation, though, is increasing at an amazing rate. Proactive websites abound, particularly in the States: Age of Autism, The Autism Research Institute, Autism Speaks – all want an answer to the obvious questions raised by a recent study’s indication that Autism now affects 1 in 58 boys, and is increasing by 10-17% every year. Why? And for how long can the Medical establishment keep ignoring this welfare time bomb by so blatantly failing to consider its causes beyond the genetic?
“Autism in 2009 is not mainly a heritable brain disorder, characterized mainly by social deficits. I wish! Autism today is a total body disease, one that affects the brain, the gastrointestinal system, the immune system, liver and kidney functioning…doctors must make an effort to educate themselves about the immediate and profound needs of our children and the need for more biomedical interventions.”
The following YouTube video is over half an hour long but believe me, if you’ve got a kid with Autism, it flies by.
If you haven’t got a kid with Autism, then, to brutally summarise, Ms. Masson is arguing that Autism is as much an auto-immune disorder triggered by environmental toxins as it is a hard-wired dysfunction of the brain. The sheer toxicity of everyday life in the 21st Century is impacting on adult’s bodies in the form of cancers, and on children’s developing brains in the form of Autism. She therefore prioritises detoxification through dietary change, and, while I sense Ms. Masson may have had a few setbacks, I think she’s mostly been successful with her treatments.
Many severely Autistic children have chronic bowel problems, and if switching to a gluten-free diet, for example, means a kid can learn to live without pain then great, bring it on. If Omega 3 and Zinc supplements can grant Eva’s brain the suppleness to more easily adapt to her environment then brilliant, buy me a bucketload. But then Ms. Masson also recommends purging a child’s system of Heavy Metals – predominantly Mercury & Lead - through the process of Chelation, which even Wikipedia describes as “a scientifically unsupported, dangerous, and occasionally deadly treatment for Autism.”
Like many doctors just trying to help families, she is willing to explore any biomedical treatment that might alleviate Autistic symptoms so long as she can minimise the risks, but is she right to even try? The source of many of the more outlandish therapies is actually a 2005 paper published in the Annals of Neurology by Dr. Carlos Pardo from Johns Hopkins. After performing autopsies on people with Autism, Dr. Pardo discovered that they all – without exception – suffered from abnormal brain inflammation. His study – to his horror – has since been used by radical treatment lobbies across the globe to justify adapting any treatment for brain inflammation, however hazardous, to an Autistic child; from powerful immunosuppressant drugs usually reserved for organ transplant patients, to Hyperbaric Chambers such as those used to alleviate ‘The Bends’.
Now, no-one knows how a child’s body might react to repeated & prolonged exposure to pure oxygen under pressure, but no-one seems willing to wait to find out. A recent article in the Chicago Tribune points out how one of the doctors pioneering this treatment…
“…has not done studies to show his protocols work and are safe. He said he doesn’t have time to wait for science to validate the results he and parents see. Also, grants are difficult to get and clinical trials may miss subtle improvements.
“Science is slow,” he said. “I will use the safety of the science and, no, I will not throw the science out the window. But the science has to be balanced against the wisdom. And science says, ‘There is no wisdom from you, the mothers or fathers of the world, who depend on anecdote. Only science has wisdom.’ “
What is this nebulous ‘wisdom’ you’re banging on about sir? Does it have anything to do with the cost of Hyperbaric Chambers, a course of which can run to tens of thousands of dollars? And did your report on the beneficial effects of oxygen treatment have anything to do with your status as ‘Medical Advisor’ to the International Hyperbarics Association, who actually co-funded your studies? Surely not. Christ, you’re not even considering what might have caused the brain inflammation in the first place. As one of Dr Pardo’s colleagues points out:
Meddling with neuroinflammation could actually be a terrible mistake, said co-author Dr. Andrew Zimmerman, director of medical research at the Center for Autism and Related Disorders at the Kennedy Krieger Institute in Baltimore.
“It may actually be an attempt of the brain to repair itself,” said Zimmerman, a pediatric neurologist. Suppressing the immune response “could be doing harm.”
I don’t believe parents ignore these dangers in search of relief, but I do believe there’s a valid reason why they’re driven to such extremes. They fill a vacuum created by the failure of authorities to address the expanding nature of the Spectrum with a corresponding expansion in therapeutic approach. Very few ‘mainstream’ paediatricians, for example, will clue you into the fantastic results you can get by simply switching your kid to a GFCF (Gluten Free Casein Free) diet as recommended by Ms. Masson. Here’s a video made by one mother who’s done just that, and who, along with intensive ABA (Applied Behavioural Analysis), has seen her life change dramatically. Yes, I know this vid is very American in its cloying sentimentality, but if I strip all that away and park my Limey cynicism for a minute, even I can see it’s a triumphant testimony to one mum’s battle to make her boy better:
So yes, biomedical treatments can work, and it’s a shame the medical establishment can paint parents as fundamentalist lunatics for even trying them. If, as the Tribune article concludes, it does no harm, then why not? But then medical professionals shouldn’t be encouraging parents to blindly use their kids just to push the envelope.
These parents are in a strange space. Faced with an increasingly common disorder for which there is neither cure nor apparent cause, they are more vulnerable than most to the lure of the unorthodox. In an ideal world there would be a more global, more inclusive approach to Autism treatment that acknowledges the validity of certain biomedical advances and at least tries to regulate them. That it’s down to proactive parents to sift through the quacks to find the cures says everything I need to know about how far we are from that ideal, and how much mums & dads are willing to do to build better futures for their children, most of whom, in the eyes of everyday doctors, are condemned to an Institutionalised adult life before they’re even five.
I can’t blame any parent for refusing to accept that, just as I’m appalled that the current orthodoxy will never guide the vast majority of more passive parents towards the help their kids need.
As for Eva, she’s very energetic, very forward, and very verbal - so much so that her condition isn’t immediately visible. Her problems appear to be largely social – an inability to read body language and life’s myriad unwritten rules – but she can learn that stuff and, most vitally, she wants to engage. Only last week her teacher saw Eva tap the knee of the boy sitting next to her and ask “Do you like me? Will you be my friend?”
Many parents with kids on the opposite end of the Spectrum would die for such development and I truly am a lucky man. The behavioural techniques we’re perservering with might not ‘cure’ Eva, but they will teach her what she needs to survive, and that’s the least any parent can do.