Valerie Foley

Archive for August, 2014|Monthly archive page

Can we talk…?

In Action, Research on August 29, 2014 at 11:52 am

This week, a CDC scientist revealed he had participated in what he considered falsification of data in relation to a 2004 study into MMR/Autism links.

Naturally, many who consider themselves effected by this falsification were up in arms. Articles and updates flew around social media. Appeals rang out across the world for media coverage, explanations and retribution.

The CDC issued a response, reassuring the world that nothing actually untoward happened, that they were merely massaging the available data for greater validity and that measles was indeed a nasty bug preventable by vaccination.

CNN got itself embroiled in the issue by repeatedly removing and reposting ireports on its site, and then broadcasting a story that denied the whole issue had limbs.

And in the middle of it all, my family and I sat in a major children’s hospital with a bunch of excellent neurology professionals. We are trying to work out why our son who went silent after his MMR at the exact time the study was released, and who has endured transverse myelitis, chronic gastro-intestinal disease and intractable epilepsy, has become near neuro, immune and gastro typical since we trialed him on massive doses of prednisone (the same drug that has shut down the circulation in his extremities, stacked on 6 kgs in 4 weeks and left him with a constant tremor in both hands, but I digress).

As I listened, learned and watched dedicated doctors scratching their heads and muttering ‘inflammation, idiopathic, auto-immune or something?’ I found myself wanting to raise my hand and say, ‘Can we talk? We all saw what happened here.’

These are doctors who signed a form many years ago to say, ‘Do not immunise this child any more. Signed, A Neurology Team from A Major Children’s Hospital.’

These are doctors who delight in every advance and decry every setback our child experiences.

These are genuine, honest, dedicated professionals who are doing their job.

Like Dr Thompson from the CDC.

While CNN, and TIME and Forbes (oddly silent for now, given their previous drum beating) and Snopes (I know, really?) scramble to deny any feasible reality to anything resembling a question over vaccine safety, real doctors and real scientists and real families are well aware there’s not just a gigantic issue, there’s a growing pressure to address it.

But we can’t.

For some reason, we can’t have a rational adult conversation that has the words ‘vaccine’ and ‘autism’ in it. Not even if we ban the prefixes ‘pro’ and ‘anti’. Even if we liberally apply the word ‘safety’ instead.

What is the problem here?

It’s not about the prickly issue of child health, because we all know R Kelly told us children were our future before he made a few crucial errors of his own. If we were genuinely concerned about child health, we’d be we’d be all over working out a solution to 2% (up from 0.000000001% 20 years ago) of our kids being chronically ill.

It’s not about party politics or socio-economic issues or geographic boundaries because autism crosses all of those.

If we listen to Forbes and TIME, it’s about crazy people and conspiracy theories. If we listen to many vaccine injured autism families, it’s about money and the power it wields over government and health policy. If we listen to some autism self advocates, it’s about cruel humans and their driving need for sameness.

No matter what, it’s an issue.

The media has grappled with bigger adversaries.

Why is this one so off limits?

A man whose job it was to honestly analyse statistics relating to MMR administration and autism diagnoses participated in fudging the figures. He knew what he was doing and it made him uncomfortable. He knows he contributed to the injury of subsequent children, including my own.

Instead of standing up as a world and saying, ‘Shit. OK. Let’s really look at this’, we are told to remember that vaccines are awesome at preventing disease and emotions are poor guides for reliable actions. We are told to again, question the credibility of those calling for change, and not to consider the possibility that change is actually a valid option.

We know science gets it wrong, all the time (the Earth is not the centre of the universe after all).

We know public health policy has to change sometimes (cigarettes were healthy once).

Medical conditions morph from annoyance to emergency regularly (diabetes, mesothelioma, radiation sickness)…

In autism terms, these things are true.

 – Kids all over the world went from healthy to disabled closely following routine childhood medical intervention.

 – Kids all over the world didn’t develop like their peers for no medical reason that any medical professional could name.

 – Kids all over the world are struggling to be kids in numbers we have never seen before.

It might be caused by vaccines or nutrition or chemicals or lifestyle or all of them and so much more, but the fact remains, it is happening. More and more every single day.

Obviously, it has happened to us. I have met many in our travels who have suffered similar fates. We are all different, but we share one thing – our kids are sick, and most of them weren’t born that way. Many of us do not identify with the highly promoted theories of fast evolving difference, Silicon Valley Syndrome and nerd-gasm.

I work in TV. I see, all the time how a story emerges from the need to fill a black hole, the need to attract viewers or the need to share important information.

I live with a child who confounds his own doctors. Who charmed everyone with his precocious skills then terrified everyone with his sudden silence. Who has the atypical version of every diagnosis he gains.

There is much I don’t understand in this world, but this week, my lack of understanding has reached new bounds.

Why hasn’t one mainstream media asked the obvious question(s)?

Why did the CDC mandate the pre-publication reanalysis of figures they knew would be contentious.
Why have they promoted those figures vigorously for ten years as evidence that parents like me are crazy, despite the fact they KNEW they altered them to re-orient the study outcomes?
If they believed what they were doing was right, why not own it up front? Why leave a smoking gun dormant for a decade?

Surely this is interesting to someone? Government? Media? Business?

Someone?

Parents of disabled children around the world are interested, because many of us saw it with our own eyes. We didn’t need a study to tell us that our babies went dark after an immunization. We didn’t need our primary care doctors to tell us we were mistaken. We didn’t need the message that our fears were irrational or our reality was inevitable.

We are not helicopter parents (at least not by choice). We are autism parents.

Why is it that those unaffected by autism (or unwilling to challenge its inevitability) are so vehemently disinterested in talking about this week’s revelations? The information being shared is from the source we have been trained to trust- the CDC. The guys who look after America’s health, and by default, the world’s domestic health policies.

Surely this is a moment. Permission to speak. A chance to have an adult conversation. No tin foil hats. No hysteria. No vilification. No finger pointing or lying or obfuscation.

What we need is respect, conversation, listening, sharing, questioning, common ground, commitment to genuine understanding.

Media…? Government…? Business…?

Can we talk?

 

A word…

In Action, Medical, Parent issues, Research on August 3, 2014 at 4:42 am

I’m not sure if this post is for the general public, new people on the autism journey, or for the salty sea dogs, but it feels like it needs to be said, so here goes. This has been a big week, in a big year, in a big decade in what began as a very ‘normal’ life.

You know the drill – be a kid, grow up, make plans, achieve some, reassess others, trundle on, fall in love, become a parent. It’s hard to pick the point for me, when it veered from the stuff I’d seen on thirtysomething and into the bigness in which we find ourselves. But I am fairly sure it had something to do with doctors, medicine, research, trust and decision making, all of which I was previously fairly cool with.

Before I recap our story, with added spoilers, I have one thing to say (in case you are already going, ‘Man, I’d rather have a root canal than read this…’) Here’s the take home message. The thing I wish I had known a decade or so ago.

‘Autism’ is a word. It’s not a diagnosis. It’s not a reason. It’s not a condition, or a way of being. It’s not an answer.

‘Autism’ is a word. Sometimes it’s a comfort, sometimes a weapon. It’s often an obfuscation. A way to stop conversation and halt questioning. But… (you know what’s coming)…

‘Autism’ is a word.

Let me explain what I mean. Or maybe go make that dentist appointment. Whichever works for you.

I’m sure I’ve blogged my son Billy’s story before, but the TL/DR is: charming, hilarious, wonderful, really really sick.

– Born in 2003.
– Had a massive startle, huge smoochable cheeks and the nature of the Dalai Lama.
– Responded very badly to early vaccines (logged reactions, kept on going because the doctors said its all good).
– Still walked and talked early, and loved everything about life, except things that made sudden loud vocal sounds.
– Developed rubella from the MMR (still not out of the realms of ‘normal’), came out of infection silent and withdrawn.
– Did a lot of speech and OT.
– Developed atypical transverse myelitis at 3, following the varicella/meningicoccal vaxes (we stopped vaxing then because the hospital told us to… we were nothing if not obedient). Treated with massive doses of prednisone.
– Recovered, which is a bonus, as many do not, chronic GI issues from that point.
– Diagnosed with ‘autism’ at 4. Atypical.
– Still charming and hilarious.
– Tried really hard to cope with mainstream schooling, vomited and shut down a lot.
– Started homeschooling, a lot less vomit and a lot more engagement.
– Developed (in order, and increasing in intensity) OCD, tics, tremors and behaviour changes (see Dalai Lama comment earlier). – Now  diagnosed with CSWSS (Continuous Spike Wave in Sleep Syndrome), and doing a trial of prednisone at doses high enough to make our local GP make a face like I’d told her her mother was a zombie.
– Is still charming and hilarious.

Throughout this whole journey, the consistent message we received (from those in whose medical hands we have had to place our son) is… gosh, this kid attracts lightning strikes.

At first, we accepted the unlucky hypothesis without question.

– Massive startle in and out of utero? ‘That’s odd. But we see it sometimes. Chill and enjoy him.’ So we did.
– Swollen tongue, unresponsive after vaccines? ‘He is one of the unlucky few. Just give him anticipatory pain relief the next time.’ So we did.
– Infection after immunization? ‘He’s in the 5% who develop the infection. More pain relief.’ So we did.
– Silent after the infection? ‘Early Intervention is key. Try that.’ So we did.
– Transverse myelitis? ‘Rare, but not unheard of. Lets get him through this and then we’ll talk. PS. maybe stop vaccinating now.’ So we did. And we did talk a lot, about possible hypotheses, but while lots made sense to us, not much rang action inciting alarm bells in the medical system.
– Autism? ‘There’s your reason. He’s autistic. GI issues, inflammation… these things are common in autism. Just accept him.’ So we did, though something felt odd as we had accepted him all along. Accepting that one word was the reason for so much biological dysfunction was a bigger challenge. One we still don’t care for. But I digress.
– Epilepsy? ‘Seizures are common in autism too. Try these medications.’ So we did, and they failed, and he got worse and by now we were quite good at initiating questioning conversations and could request testing that eventually showed that he was indeed getting worse and…
– And now this new place we are in. This place where no amount of acceptance can shift the fact that life altering brain damage has occurred and will occur more. Every day and every night. Every 13 heartbeats, to be precise.

We we have a new hypothesis now, one even his mainstream neurologists don’t dispute.
– Vulnerable (for many difficult to nail down reasons) baby gets hit with environmental insults (some mandated by public health professionals, some from my diet and lifestyle, some from the choices we made for him, some from local councils happily spraying chemicals to limit pests and bacteria), goes into a state of neuro inflammation that gets written off, as it does in many babies.
– Vulnerable baby continues to get hit, even though his parents squawk a bit.
– Neuro-inflammation pops up again and is written off as bad luck.
– Parental squawking results in a descriptive diagnosis (and a prescription of acceptance, outside in ‘therapies and non-questioning).
– Parents change life completely to reduce chances of another neuro-inflammatory crisis (not that they really understand the detail, just that their kid is non-specifically sick and people keep calling it behavioural and that seems way wrong).
– Neuro-inflammation strikes again, despite massive lifestyle avoidance type changes. It gets treated as more bad luck, and as though it’s happening in a totally strong and capable body. Not only does the treatment not work, it seems to cause more damage. A lot of the damage looks behavioural… common in autistic kids, so not a big deal.
– And then it’s a big deal. A really stinking, capacity robbing, permanently damaging, terrifyingly uncontrollable big deal.

The reason is not ‘autism’. ‘Autism’ is a word. This is a life. A body. A brain. A person. A deep systemic illness, potentially shared by a LOT of people (given the amount of people who share the presentation and the word as a ‘diagnosis’.)

We (me, you, our kids, all those other people) are at the pointy end of a wedge that now encompasses at least 2% of a generation of children. These kids, no matter what you call their diagnoses, are struggling with being kids. Their bodies and brains are not working like they should. Instead of being adequately diagnosed and treated, they are told it is common (which is it, now, despite the commonality being the exact opposite of anything sociologically normal).

Instead of asking why, we are told, there’s no reason so don’t worry about asking. We are told the biggest problem is that we don’t accept difference, when really the biggest problem seems (to me) to be that we don’t accept the seriousness of what is happening. And let me tell you, from where we sit today, this is serious. All the doctors who treat him (and there are many) believe it is serious, and all they all agree the decisions we made to protect his health (nutrition, lifestyle, vaccination) were not the best in retrospect. They have signed official forms to say so.

I earned my tin foil hat, but I do not choose to hear it. I choose to see that semantic obfuscation complicates already complex arguments. Hear ‘vaccines don’t cause autism’ and know that ‘vaccines do cause progressive epileptic encephalopathy’. Looks the same on the outside. Is the same on the inside.

We are all biologically different. A room full of adults drinking alcohol makes that as clear as day. Ten people taking the same antibiotic for the same condition with entirely different efficacy makes that clear as day. Me getting stung by a bee and my siblings pissing themselves as my face swells up and theirs never does makes that clear as day.

My kid wasn’t any different to anyone else’s kid when he was born. Once he started behaving differently, people still insisted he was just fine, biologically.

The doctors who treated him. The teachers who mistreated him. The public health policy makers and politicians who unquestioningly counted him among many others in the ever growing autism numbers… they insisted he was healthy. That what we were seeing was not a health issue, but a learning/social issue that could and would be managed easily.

There was no need for medical attention because there was no medical issue. Until there was.

My son is sick. Really sick. All the reasons why, given to us by doctors and therapists and policy makers, have turned out to be smokescreens, diversions and actual flat out mistakes.

Illness, dysfunction and a lot of other words we were told not to associate with ‘autism’ caused the behaviours that we call ‘autism’ in our child. Left untreated, these illnesses have had consequences way worse than the behaviour we were encouraged to focus on. He has the same diagnosis as a legion of other kids. A benign, tolerable, nothing to pathologise diagnosis.

Yet he will never have a job, never drive a car, never have a relationship of his own choosing, never go to university or live alone. He can’t use his limbs effectively. He can’t think clearly. He can’t sleep through the night without intense epileptic activity.

He is on the pointy end of the spectrum for sure. He’s the canary in the coalmine. He should never have been thrown into the pool with the other kids, and yet he was. Because god forbid anyone gets measles or dirty hands or prickles in their gardens.

‘Autism’ is a symptom of a far greater illness. For some, maybe the illness is manageable. For my son, that illness is deadly serious. And let me be very very clear that I do not accept it. I will never accept it, and do I believe anyone should – no matter what we are told by medical, educational and social policy professionals desperate to shore up their own (probably legit) agendas.

‘Shit Happens’ can’t be a guiding principle when it comes to the lives of children. Can it? It should not be happening. It should not have happened. My son should not be this sick. If we (us and his doctors) had stepped in at any one of four or five obvious junctures, with a framework other than ‘this is common in (autistic) kids’ we may have averted a disaster that may yet get much, much worse.

If we did not live in a world that says ‘this is common’ at all, my son may have avoided a life of permanent disability. If babies reacting badly to common medical and lifestyle interventions was not swept under the carpet, we might not be here, and nor would potentially millions of other people. Accepting ‘autism’ is like accepting ‘the internet’. It is, now, though it wasn’t before. End of analysis.

Ignoring the medical nature of  ‘autism’, is like ignoring the weird way we use cats on the internet. If you take nothing else from making it this far through this post, take this. https://i0.wp.com/cdn.cutestpaw.com/wp-content/uploads/2013/12/Most-Famous-Felines-007.jpg

This cat isn’t ‘grumpy’.  She has a medical condition (difference, variation, other happy word) that makes her look grumpy.  As it happens, it won’t kill her, but is that even the point? Who wants to think about that cute cat having a medical condition? It’s far easier to normalise it and appropriate it for something charmingly, warmly and fuzzily human. Look beyond the behaviour to the biology.

It’s not happening because it should. It’s happening because it does. Because something is not working like it should. You can be mollified by value laden distractions like ‘normality is overrated’ if it makes you feel better, but the reality of the something not working like it should still remains. That something just might be a big deal. It is for us. A deal that’s so big, it’s hard to contemplate. Unfairly hard.

It is clearly not just a vaccine issue. It’s not a stupid V clever issue. It’s a complex, systemic, generational issue that is way too important to be buried in us/them arguments and self righteous personal ‘passions’.

If your gut is rumbling, if your instincts are prickling, if you feel like something is not right… open your mouth. When you are told to stop questioning, you are probably asking the right questions. Challenge the science and the system. Don’t be placated with words. Use them to demand the change you think is necessary. I wish we had, way sooner.

And if you couldn’t be arsed, at the very least show some compassion for people who have found themselves in a position they could never have anticipated. Who followed the rules. Who were the opposite of the ‘stupid’ you like to label them with in the cheap memes you share, or want to share online.

We did what you did. You didn’t suffer. Billy and many others did.

Think what you want to think. Believe what you have come to believe.

It doesn’t make you any righter, or me any wronger. It just is.

If you are happy for the collateral damage of your certainty to be my kid and not yours… thanks for coming. Your sense of social justice has been noted.

NB. Please excuse my random manipulation of cats to make my point. They will have their revenge.