Valerie Foley

Archive for the ‘Action’ Category

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.

The herd of elephants in the autism room

In Action, Diet, Environment, Medical, Parent issues, Perceptions, Research on April 23, 2014 at 3:32 am

Not wanting to deflate the hope of newly diagnosed families that their child will not be autistic one day, but wanting to protect them from the future awful feeling that they’ve been tricked into believing same.

We’ve all been here, right? You don’t want to spook the horses, but the road ahead for a family with a ‘quirky’ toddler is not an easy one. Do you pat them on the back and make comforting noises (like the doctors do), or do you blow their freaking minds and potentially break their hearts by telling them what you have learned?

I used to be a patter. Now, not so much. I struggle generally with heart breaking, but I’ve been trying for a while to come up with a way to do it anyway. Preferably with some intellect and guidance attached.

I know when I was in their (newly diagnosed) shoes a decade ago, the most powerful weapon I thought I had was hope. Really, at that time, my hope was actually denial wearing nicer clothes. Many many many people (real and virtual) gave me lots more pretty outfits to dress up my denial while we journeyed to a place where my kid was CEO of Apple and I was a hero for accepting him.

I now think my weapon of choice should have been thinking, not feeling. This isn’t about how we feel about our kids, that’s our business. It isn’t about how we feel about autism, which is also quite a personal matter.

It should be about how we think. What we think our children deserve. What we think happened to them. What we think needs to be done to prevent more damage.

We could start by casting a beady eye over how we, as parents, have been led to think about autism (or perhaps, how we have not been led to think at all).

Autism is a word used by doctors to describe behaviour and ability. It is diagnosed by doctors with training in psychology, ratified by para-professionals with training in the modification of behavior. At no point in the process of identification, diagnosis or mainstream management of autism is the physical health of the child, as it relates to this new diagnosis, examined. Causation is not discussed (unless your kind of discussion involves ‘we don’t know’ or ‘it wasn’t that‘).

Despite the fact that we all get rightly huffy about ludicrous theories like ‘refrigerator mothers made these kids autistic’ we let the definition of autism in the very hands that held that theory gently for so long.

Despite the fact that we have no idea what’s causing the behaviours and abilities that define the condition our child has been diagnosed with, we are encouraged to put the child in the hands of people who actually do not care about that very fact.

We tell people we want them to fix it, without ever asking a medical doctor what ‘it’ is. More precisely, we are told to accept that it is OK that medical doctors don’t know what it is, and we should leave it in the hands of those who will aim to ‘change’ it.

What the hell are we doing?

Well, some of us strap on the sheepskin and carry on to Early Intervention. Some of us scratch our heads and proceed with caution. The rest of us, an increasing pack of us, start researching. We do it the way we are all taught to research – go broad and understand as much as you can, make a specific plan, enact and continuously evaluate the plan, fall asleep at 3am, get up and do it all again.

With a few variations, this is what we learn.

There are many predicted roads to the future, each driven by their own philosophy and their own version of science.

The highly evaluated roads (the ones that reinforce the status quo, and aim to manage the outward expressions of ‘autism’ – speech and language deficits, behaviour challenges, restricted interests) do not question the causes of those expressions. These are the therapies that every family is told will change their child’s trajectory – speech, OT, PT, behavioural therapy. They undoubtedly help some children to live a calmer and more functional life. Extra emphasis on the some and on the non-health, pro-function related outcomes.

The roads that address causation are under researched and inadequately documented. When they are properly researched they are ignored, buried or pilloried by those whose philosophies they challenge. These are the biomedical, integrative, nutrition – health related medical strategies. These are the ones that examine why the things we call ‘autism’ happen and what we can do to treat those.

In a culture of evidence based medicine, are anyone else’s spidey senses prickling that we are actively encouraged to favour the non-medical strategies. We are constantly bludgeoned over the head with ‘the science’ and yet we are not publicly acknowledging the evaluation of the science of autism at all.

What’s up with that?

When mainstream opinion and policy makers discuss autism, they are describing outcomes as though they are symptoms, behaviours as though they are conditions and interpretations as though they were facts. There is little acceptance of a biological basis to autism. There is no awareness of the health status of the average child with autism.

Why?

It could be because the stakes behind establishing those things as a matter of public health record are too high. The change required to attempt prevention strategies based on the hard learned understandings of hundreds of thousands of thinking autism parents is too expensive, too wide ranging, too hard for health officials to enact.

So, we continue to allow a condition that is disabling our children at a rate of knots to be poorly described and treated as a mental health condition, to be managed. We describe it by how it feels, not by how it is. Worse, we leave its treatment in the hands of those who simply accept, and do not question, its existence.

We may as well go and sit in the refrigerator and make nice cups of (cold) tea for each other.

When change is unwieldy and expensive, it doesn’t seem like a coincidence to me that the powers that be choose the passive, self managing, just accept it and be quiet  road. To them, I’m guessing it seems like a cheaper option, a safer option and an option that ultimately asks nothing of them.

In this non-thinking autism state, nations may not question, but people do.

Parents who see their child mysteriously change, wonder why.

People whose children lose capacity after routine medical recommendations, don’t believe that should have happened.

Families crippled by the financial and emotional cost of seeking appropriate medical care for their child who has been defined as not having a medical condition, are oddly perplexed about why this occurred in the first place.

The system, such as it is, generally chooses to attach to the feelings behind these parental questions, and ignore the thinking. After all, there’s no place for emotion in science, right? It’s a persuasive argument, that shifts many of us back into the sheep flock while we lick our emotional wounds.

But, if you are a newbie in the field, know that if the sheepskin coat looks like it might smell bad, there are many in your circumstances who have acknowledged their feelings and transformed them, along with rigorous research, into advocacy and action.

If public health officials charged with managing autism, knew what we (as a society) were dealing with and accepted the reality of what we (as a society) have caused, then we might have a fighting chance at both healing and preventing the broad base of medical conditions that we (as a society) choose to call ‘autism’.

Healthy kids don’t stop speaking for no reason. Healthy kids don’t bite themselves and others. Healthy kids don’t covet pieces of string and more to the point their parents are not encouraged to view them as cutting edge contemporary artists when they do. Oddly enough, neither do children choose to not control their bowels, have seizures, compromise their own immune systems or react violently to environmental toxins and compromised foodstuffs.

The medical fraternity isn’t dealing with much very well, from what we can see. They are under stress from all sides – financial, logistical, technological. I can only imagine the fact that we have handed autism to those who manage the outside and ignore the cause, is somewhat of a relief to them. The previous generation of autism parents who appeared to accept the the futility of questioning the condition must have been a massive relief. The fact that these accepting parents are rapidly dropping in numbers and being replaced by angry, intellectually rigorous, politically organised autism parents must be a source of gastrointestinal upset for them. Lucky they have a drug for that, right?

If you join the aforementioned grumpy ones, know there is one thing and one thing only unifying us – the need for change.

If we want answers, we have to ask questions, even if the questions are large and confronting, even if the answers don’t come easily or quickly.

If you don’t want answers now, you will as your child ages and the strategies you have been offered have likely not magicked the challenges away. The acronyms and the obfuscation of the condition and the medications do not heal the condition, they are a sometimes useful short term fix. The promises of the brochures and the programs do not heal the condition, they manage it, at best. While we treat it from the outside in, we are ignoring the elephant (the herd of elephants) in the room – something is causing it and there is no consensus on what – lots of workable theories, but no consensus. That is a shaky shaky foundation for intervention that is so enthusiastically endorsed by the mainstream.

You might not want to think about that right now, but trust me, you should. It feels much much worse when you look back and see how much time and money you wasted, how little progress has been made, and how much worse the condition has become.

When Billy was diagnosed, the number we were given was 1 in 10 000. It’s now 1 in 68.

When Billy was diagnosed, there were two predicted trajectories – severe autism or Aspergers, with little mention of any medical involvement. Even the most conservative of autism organisations acknowledge this is no longer the case.

When Billy was diagnosed, I was assured he would be mainstreamed, healthy and happy. That is not the case for him, or for the overwhelming majority of his same age peers. It’s just not.

And no amount of cuddly sheepskin makes that feel like a good thing. Because it is not. They didn’t know much then, and they don’t know much more now. Platitudes and promises will not heal your child. Sheer hard work, rigorous research and major social change might.

Though it doesn’t feel like it, right now, I am patting you on the back.

It may not make you feel better, but I hope it makes you think.

Bite me, April 2.

In Action, Diet, Environment, Medical, Parent issues, Perceptions, Research, Supplements, Therapy on March 31, 2014 at 5:47 am

**I apologise in advance for some of the articles I have linked to in this post. In covering the dross that April brings to autism world, some toe dipping in the grotesque waters of ‘Keep Calm and Suck It Up’ is required. It is heretofore referred to as ‘glurge‘ and will be expunged from meaningfulness in due course. I’ve tried to balance with some more useful stuff as well**

It’s that time of year again. You’d think after 10 years of this game, I’d be used to it. And yet, it just gets more frustrating.

New numbers (higher again, how about that?), science vs anecdote dogma (always a joy), everything is au-some, light it up blue, awareness is everything, blah blah blah…

I used to be able to float through this stuff and find the bits I needed. Now, it’s genuinely, literally and completely making me sick. My heart is pounding, my thyroid is busted, despite a great diet and a total life revision I am chronically deficient in things I shouldn’t be deficient in. It’s crazy.

Why is it crazy?

It’s crazy because I, and many many parents like me, want nothing more than to prevent the preventable in children. We want to do this because we have seen our own healthy children regress, or we’ve seen our own children fail to develop as expected, and we don’t think other kids should have to go through this if there is any chance it can be prevented. We can all see it can be treated, to varying degrees of improved outcome, so it’s a no brainer that we should try prevent it as well.

But, say that in the wrong place and you are a bee’s dick away from Hitler. Say the ‘v’ word and eyes glaze over as people picture you as some pubic-hair-plaiting-stoner-breathairian (not that there’s anything wrong with that). Mention your own story and you are ‘ignoring the obvious science.’ Best of all, if you happen to mention anything negative about ‘autism’ in the wrong place, an autistic adult will be cruelly used as a ‘how could you question my existence’ smoke screen.

It’s all bullshit. Every last wasted ounce of energy. Clouds and clouds of nonsense that cover the fact that we have a giant, wide and deep bottomed problem on our hands and we do not know what to do about it. So instead, we will pretend it’s all OK.

Well… it’s not OK. Not with me. And I no longer care to spend time listening to people who think it’s OK. If one more mealy mouthed parent/doctor/’academic’ tells me that it’s better not to use words like disability because Billy ‘might’ not want to think of himself that way, I will start hurling Thomas trains at them. And I have access to quite a few of them.

Billy doesn’t get that choice. We made it for him.

Who ‘we’ actually are, is up for contextual discussion.

We could be his parents by choosing sub-optimal nutrition and medical intervention for ourselves and then him; or our parents for same; or his doctors for not carefully enough including the ramifications of implementing standard operating procedure again and again and again; or the autism industry that promises big, charges for more and delivers almost nothing while shrugging its shoulders and saying ‘Oh well, that’s autism’; or maybe parts of the education system that betrayed him and so many more in their covert square edge smoothing operation;  or most reprehensible of all with blue day approaching, the part of the autism community that has decided it’s more important to viciously undo those to think differently about autism than to allow people to access help in whatever form they choose.

Billy doesn’t get to pretend he is not autistic through assiduous use of behavioural therapy and medication. Billy does not get to celebrate his difference in a protected social environment full of computers, lego and pizza loving peers. Billy is too busy hauling basic human function together. If your child is not, you are fortunate NOT more correct in your choice of terminology than me. And yes, I am being charitable.

We, as his parents have every right in the world to be angry about what has happened to our son. More to the point, we have every right to advocate for change to the systems that contributed to what has happened. See a couple of paragraphs above if you are wondering what systems I am referring to.

For each of the ten years Billy’s life has been compromised by this nonsense, I have a question that is yet to be answered by the administrators of glurge.

1. What is ‘autism’?
(like what biological function causes human kids to exhibit the same triad of impairments, that we conveniently aren’t allowed to call a disability. Why are we pretending that words like inflammation, encephalopathy, seizure, motochondrial, immune dysregulation, allergy and intolerance are less preferable than picky eating, tantrum, zoned out, stimming, lazy, unfocused and hyperactive?)

2. Where are the 2% of adults with autism?
(because if it’s better diagnosis making the numbers rise then the undiagnosed hordes are somewhere, functioning sub-optimally without intervention, early or otherwise that is essential according to the powers that be. If 2% of the population were somehow able handle school without support, though most current ASD school kids find that quite challenging, which magic pixies made their adult lives suddenly tolerable?)

3. Why can’t we talk about vaccines?
(If vaccine package inserts say autism is a possible long term outcome of use, how come we accept the statement that ‘science’ says vaccines don’t cause autism? In related matters, what perverse logic says every human will react the same to any introduced substance? Has science ever been in a room full of drunk people?)

4. Why do we use ‘science’ as a weapon to shut down discussion?
(When there are countless peer reviewed studies linking vaccines and autism, why are we pretending there isn’t? OK, there are 84 here, that’s not countless, but it’s not zero either. If they aren’t convincing, search the Australian Government’s database of Adverse Event Notification. Or watch this. It is as black and white as a rainbow, anyway, between statistics as science, anecdote vs science and my personal favourite the rejection of validity because the system is screwed anyway. Clearly, science has some issues)

5. Why are people so determined to normalise what is deeply deeply atypical?
(forget, for one second the tendency to go ‘normal, what a toxic word’, and instead focus on the experience of realising your child is not achieving milestones and is instead regressing and increasingly physically sick. If autism involved 2 % of the population developing a disfiguring rash, you can bet your life we’d be addressing causation as a matter of urgency)

6. Why do we hide behind arguments about semantics?
If disability is such a dirty word, why does the CDC refer to a speech and language impairment (the thing so many parents cling to like desperate autism avoiding limpets) as a disability? So, all that ‘my kid isn’t disabled’ means exactly what to the systems that oversee the wellness of the world? While we are on ‘d’ words, why is a ‘disorder’ preferable to a ‘disease’? Why are we ‘dicking about’ pretending that arguing the values of words is more important than focusing on the actual condition we are discussing?

7. Why are we so afraid of common illness?
(let’s not sink into a pointless discussion of whether you would rather your child be disabled by autism or disease, and focus on the question of why it’s so not OK to be sick anymore. What’s wrong with a few days off school or work with the flu, well, except that the world has to adapt to the fact that you are away and that costs money, and also you lose money because no-one’s got a salaried job for life anymore… ah, OK. I see… carry on…)

8. Why have we accepted ‘there is no known cause’?
(How could any developmental condition, especially one that’s growing in impact daily, including ‘autism’ NOT be related to nutrition, the environment or the physical health of anyone involved? Seriously? After all these years? Why are we letting paediatricians say ‘we have no idea’?)

9. Why is autism intervention not related to physical health?
(How could it possibly be that improving the health of an autistic child through nutrition and lifestyle modification isn’t helpful? What deep Catholic denial was I in when I accepted that one? In other questions, why have we not studied more of the legions of children who have gone through biomedical interventions and seen improvements)

10. What are we doing about it?
(Why are we, and I refer specifically to Australia here, doing a grand total of nothing yet at a government level, to understand why more children every day are being diagnosed with ‘autism’ or how their ongoing health might be related?)

*crickets*

I’m done arguing. I’m taking action. Well, as much as my own health and my child’s health will allow.

I’m working with the system – finding alternatives in education, working with doctors with open minds and credible careers, connecting with like minded parents and service providers. We are all moving forward practically and medically, and more importantly, we are leaving the unhelpful nonsense (AKA glurge) behind.

It isn’t OK to hide behind anything. It isn’t OK to take each other down in order to build ourselves up. It is definitely not OK to co-opt people as emotive smokescreens in discussions that matter to the people having them (even if they happen to disagree with you). These things might be natural human reactions but they are also basic political strategies designed to shut down subversive agendas. We do not need to be distracted this easily.

No matter how you stand this condition up, it is an emergency. We are not set up to deal with it now, never mind to approach the future when there are not just kids unable to handle kid life, but an additional very obvious cohort of adolescents and adults unsupported in their existence.

One of them, unless we find something to help him that currently isn’t common knowledge, will be my son.

I will not let that happen. What responsible parent would?

That was another question. Ugh. He’ll be 11 soon. Indulge me.

 

IMG_6839

(Image: Clifford Harper/agraphia.co.uk)

 

What the hell are we doing?

In Action, Medical on October 29, 2013 at 12:55 pm

My child is really great. He’s one of those people that people respond to. He’s got a genuinely beautiful spirit.

I promise I’m not exaggerating about this. Ask anyone who has met him.

He’s been whacked by life’s medical wet fish way too many times. First with dodgily constructed ears, then with ‘autism’ and all it brings, then with Transverse Myeitis, then with gastro-intestinal issues and now with epilepsy.

We’ve avoided much medication in his life, which is handy because he reacts really badly to most of it. He had extreme vaccine reactions, he has vomited bile in response to every GI medication, his system flared wildly with every antibiotic. The most common response we get from doctors was, ‘I’ve never seen that before’ when we bring our kid back sicker after the medication.

He did have a really positive response to prednisone when he had Transverse Myelitis. It saved his life (so, quite positive) and also made his tiny 3 year old autistic body speak in full sentences for the first time ever. Sadly, it also (as predicted) blew out his liver and kidney function and so had to be weaned carefully.

Exactly a year ago, though, everything we knew changed.

Billy had what was described by his GP as a ‘mental breakdown’ (tics, OCD, anxiety) and which quickly became tonic clonic seizures.

After his first seizure, we watched and waited. After his second, we hoped we were just unlucky. When his third and fourth came in quick succession, paralyzed him down one side and made him vomit uncontrollably, we had to give in and medicate.

Since then, his body has been struggling.

The first drug, Epilim (or depakote, for the Americans) made him rapidly gain weight, lose control of his bladder intermittently, vomit in the early afternoon and develop OCD. Also, it didn’t stop the seizures.

The second, Keppra, stripped weight off him and brought on truly hateful psychosis. And it failed to stop the seizures too.

We are too frightened to try a third, so we are going backwards. First back to Epilim, and then, we will take tentative steps towards the Ketogenic Diet in some form.

Why am I telling you all of this?

I’m telling you this because every day, I pop pills out of packets and force my child to take them.

He takes them, because he’s a lovely and compliant child who doesn’t want to have seizures, but do you want to know what else he does?

Well, for some part of every day, he begs for us to ‘get his thoughts out of his head.’ He threatens to hurt himself, us or his dog. He screams a high pitched scream in response to the simplest challenge (the internet is frozen, Daddy is walking home instead of driving, dinner will be different tonight). He forces himself through self devised repetitive physical rituals to clear his mind and keep himself safe.

‘Meh, that’s autism’, you may be saying. ‘Lots of autistic kids do those things.’

Funny you should say that because his doctors try to say similar things.

But here’s the thing.

He did not, ever, do those things. Not before he was medicated.

And wah wah, poor us, get some perspective… whatever. But the reality is, the medication we are giving our child every day, the medication that his doctors insist is necessary to keep him safe, is sending him crazy.

He drops out of enjoyable activity to perform a set of tics and postures a hundred times a day. He is obsessed with all of us cleaning our hands. When his dog, who is his best friend, barks (which is rare, but it happens) he punches him so hard the dog yelps. These are all new and horrible behaviours.

And yet, we give him the medication.

We have plans to try to transition away, but those plans take time and medical supervision (and mega money and potentially almost total revision of our awesome whole food journey, but that’s a whole other post).

The point is, we give him the medication. People, we trust, with training we don’t have, tell us we must. And so we do. Despite the fact that it is taking him away from us every day, and worse, it is doing things to his body that make him hate himself. That can’t be ‘healthy’.

Seriously? Is there not something better than this?

I look around and I see so many of Billy’s peers, heavily heavily medicated. I see them with pale skin, dark eyes, way more or less weight that they should be carrying, restricted diets, school crises, failing energy, diminishing skills, failing bodies and maybe, if they are lucky some kind of an improvement in function. For many, there’s not even that.

And yet, we keep giving them the medication.

Why?

Well, we’re scared. In this house, we’re scared of seizures. In other houses, it’s that or fear of outbursts, suicidal thoughts, obsessions, violence, non-compliance, a lack of focus… all sorts of perfectly legit fears.

Balanced by another set of fears. That we are poisoning our kids. That we are doing harm instead of good. That something is very very very wrong with this picture. This is NOT what we were told would happen when the ‘a’ word was first uttered.

If you haven’t had to step into the world of medication, can I suggest you try like the blazes not to? Change your lifestyle, change your diet, change any possible thing you can before you get on the roundabout that has no off button.

It might work for a while, it might seem right, but we do not know the consequences long term. Take that gem of wisdom from those of us who see the consequences immediately and still have no choice but to keep medicating.

There are no reliable long term studies on so many medications that are routinely given to children. There are so many massive side effects that are chalked up to bad luck, mystery or collateral damage. Despite the assurances of lovely doctors who want solutions as much as we do, Billy’s medications have not proven to be either effective or safe. The drug responses the doctors raise a crinkled eyebrow about, are genuinely terrifying to us. More importantly, they are terrifying to Billy.

And yet, we have to give them to him.

If I have learned anything in the last 12 months, it’s that nothing… not one thing, is more important than health. Inside and out, from food to function, we should be keeping our child healthy. That should be our job as his parents. Yet, every day, we make it worse, not better.

This is not made any easier by the fact that in a societal sense, the health bar is incredibly low. As a (privileged) population, we’re generally eating poorly, choosing badly and living slowly. Add to that, a kid with a swag of diagnoses and a bunch of ‘mysterious’ reactions to everyday substances and expectations are even lower.

What the doctors call health (still breathing, not bleeding from an artery, walking independently, communicating effectively) is laudable, but it’s not what our kid was, and it is certainly not what we hope he could be.

He is stuck between a rock (his health) and a hard place (modern medicine).

The only way out seems to for us to throw around a LOT of money and hope some of it lands somewhere useful. We’re focusing on diet, we’re educating at home, we’re investigating gene function, we’re testing every fluid we can. We are finding out useful things, incrementally, but it’s incredibly slow, incredibly time consuming and incredibly expensive.

At the end of the day, on so many levels, we find ourselves wondering what the hell we are doing.

This should not be as good as it gets for children in 2013. It really really shouldn’t.

As a postscript, I want to share this family’s story about their journey to discover more about leukodystrophy – Mission Massimo.

I am at once floored, devastated and unbelievably inspired by their story. They articulate so clearly what so many parents I know feel. At its base, an incredulous sense that not knowing ‘why’ just can’t be good enough.

I am reminded that we live in a time when many autism parents are slandered, doubted and questioned because they do not accept their children should be mysteriously disabled. When you look at it like that, I find it hard to believe that anyone could not be yelling from the rooftops that someone has to do something.

We will do something. We will try, at the very least. And we will speak loudly to anyone who will listen as we do.

Actually we’ll speak loudly until people listen. If they don’t we have a substantial collection of wet fish with which to flog them into consciousness.

Give this to anyone who thinks I am an idiot…

In Action, Medical, Parent issues, Perceptions, Research on September 25, 2013 at 6:28 am

Before I start… two warnings.

Avert your eyes and ears if you think you can’t handle reading about vaccination.

I think we really need to grow some sophistication when it comes to this issue, so I’m going to talk about it. I’m not going to argue, so if you are up for a barney, re-post this in your own networks and enjoy.

Also, this is long. Get a drink.

Almost a week ago, someone I have a lot of time for posted this article on Facebook.

At the time, I responded with a simple message that made it clear, politely, that it did not reflect either our experience or our understanding of the ‘science’ and pretty much left it at that. The discussion went on without me. I find this is the best way to preserve my mental and heart health.

On the same day, Billy and I went to the local pharmacy to pick up his epilepsy medication (a joy for another post).

A woman about my age and clearly under the weather, sat down next to Billy. She was, to put it politely, green around the gills and was waiting for her own medication. Billy was making one of those repetitive clucking noises with his throat that I know a lot of you will be familiar with, and I asked him to stop, suspecting that a woman on the verge of hurling would not respond well to that sound. She thanked me.

Somehow, in response to something someone said about a local chickenpox outbreak, the grateful green gilled woman said, ‘Oh WHY don’t people vaccinate their children!?’

At first I smiled politely. The lapsed Catholic in me didn’t want to walk straight into her bad books. Then I thought, ‘Screw that!’ (with the non-Catholic part of me) and said, ‘We don’t vaccinate anymore, because my son here is vaccine injured.’ I expected her to nod politely (we live in a polite neighbourhood) and ignore what I said, but instead she looked me in the eye and said ‘What does that mean?’.

I’ll interject here and say, I am not making this up to make a point. There is nothing I hate more than fruity autism blogs featuring clearly confected stories designed to make a hero out of the writer and a soft point about the wonders of autism. This woman exists, and she was genuinely blown away by the fact that kids can be damaged by vaccines. Which, in turn, blew me away to a more hopeful place.

I told her Billy’s story – that he didn’t cope well with any of the vaccines in the first year of his life, that his tongue swelled and he became lethargic for days after each one, that he still blitzed the average milestones up to his first birthday, that he developed rubella from the MMR and when he recovered he was silent. Much speech and occupational therapy later, he got some (but nowhere near all) skills back. He was, by then, diagnosed with autism.

Then, at 3.5 after struggling with the varicella and meningicoccal vaccinations, Billy got sick. He was weak, he wasn’t eating, he was vomiting anything he put in his mouth. He was in hospital for two weeks, not improving much, when a nurse noticed he was retaining urine and dragging his left foot when he tried to walk.

In what seemed like the speed of light, Billy was transferred to another, bigger hospital. He was poked and prodded. He gave what seemed like too much blood from his tiny body, he had nerve conduction tests and a spinal tap, he had an MRI at midnight. By now he was paralysed from the waist down, his remaining reflexes were hard to detect, his body was weak.

He was diagnosed with Transverse Myelitis and high dose steroid infusions were started. We were told by the hospital that they suspected a delayed vaccine reaction, he was enrolled in a longitudinal study of vaccine injured children, his neurologist said ‘no more vaccinations for this child.’ We were told 30% of people with TM did not survive, 30% survived with significant disability, and 30% recovered fully.

It took another two weeks of treatment, trial, error and some truly spectacular doctoring (on both ends of the spectrum) for our tiny boy to walk and talk (actually he talked a LOT better, but that’s a steroid related story for another day) and be strong enough to come home. He came through with some residual nerve damage that complicated an already complex toileting journey, but beyond that, he was back.

I didn’t tell the green lady all of that. I gave her the Cliff Notes. She was sick as a dog, and Billy was insisting on seeing how much of his almost 5ft frame he could cram onto a glass shelving unit.

But she listened and when I drew breath she said, ‘Why are you so calm about this?’

I said I’m not really. I’m like an emotional duck – smooth-ish on the surface, but beating myself with birch fronds underneath. But I am determined those in our position should share our stories as rationally as we can, otherwise it’s easy for people to dismiss said stories as perverse, money hating, conspiracy theorist, whale singing, dismissible nonsense.

And, they’re just not.

And even though she hastily thanked me and excused herself, with her hand over her mouth, the lady in the chemist understood that for the first time.

So, why am I forcing my figurative family slide show on random strangers?

I have all sorts of suspicions about the broader context around vaccination, just as I do about the safety of food and medication and public transport and building codes and international and domestic security.

(Did I mention I am Irish? We are quite fond of anticipatory catastrophising… which really means I should never ever have been put in this position in the first place, but I digress.)

Despite my underlying, nagging fears about protecting my child from what seemed like very remote-chance conditions given our lifestyle,  I did exactly as I was told. Mostly because I was terrified something would happen to my precious child.

I’d seen news stories about babies with whooping cough, which (despite its jolly name) doesn’t involve the good kind of whooping. I’d had measles and mumps. My memory of them didn’t involve much hilarity.

I definitely asked my doctor questions. I wanted to know about how safe the vaccines were (very, I was told). I wanted to know what was in them (non-live viruses, I was told). I wanted to know how to protect my baby from trauma (pre-emptive paracetamol, I was told).

So we vaccinated. Repeatedly.

We did everything we were told, and our son didn’t respond well. Instead of being protected from harm, he was walked into harm repeatedly. By us, the adults charged with his loving care.

Thankfully, his doctors (at a major children’s hospital) are open enough to acknowledge what has happened. It’s acknowledged as something they have seen many times… it’s not dismissed (as it is for so many other children). I’d be happier if we lived in a time when their views were openly discussed and shared, but we don’t.

Why?

Well, let’s go back to the stupid news article, and the ‘conversation’ about it. Let’s think about what people do when they read an article called ‘Six Myths about Vaccination’. They don’t research, they don’t question. People react.

There is no subtlety, no analysis, no discourse in articles that come with the word ‘myth’ in the title. And there is no subtlety in the response to them either.

Like most fear based discussions, people retreat to their safe corners, without taking more than a moment to acknowledge the validity of the other corners. Which (I’m guessing) feels awesomely righteous if you have a fully vaccinated child who sailed through the experience and is happily dancing toward adulthood. It must feel disturbing if you are a parent who thoroughly researched and made the decision to not vaccinate.

It feels like being kicked in the guts repeatedly when you are us.

So let’s get real about this.

Here’s what the Australian Government’s Understanding Childhood Immunisation booklet says about vaccination:

“Immunisation is a simple, safe and effective way of protecting children against certain diseases. The risks of these diseases are far greater than the very small risks of immunisation.”

Let’s start with ‘simple’.

You should read this, it’s freely available online. Most people don’t. I didn’t. None of it sounds simple to me, but hey, I’m not a doctor.

In addition to containing the immunising antigen(s), vaccines may also contain the following:

  – Adjuvants, which enhance the immune response to an antigen; an example is aluminium hydroxide.

 – Preservatives, which reduce the risk of contamination; some examples are 2-phenoxyethanol, which is also used in many cosmetics and pharmaceuticals, and thiomersal, which is used in the Q fever vaccine but is not present in any of the vaccines on the National Immunisation Program for young children.

 – Stabilisers, which improve the shelf-life and help to protect the vaccine from adverse conditions; examples are sucrose, mannitol, lactose and gelatin. Stabilisers are also used in most confectionery and many pharmaceuticals.

 – Emulsifiers or surfactants, which alter the surface tension of the liquid vaccine; examples are polysorbate-80 and sorbitol. Emulsifiers are added to most ice creams and many pharmaceuticals.

 – Residuals, which are minute or trace amounts of substances that remain after the manufacture of the vaccine; examples of residuals detectable in some vaccines are formaldehyde, antibiotics such as neomycin or polymyxin, and egg proteins.

Further details of a particular vaccine’s constituents can be found in either the product information (PI) or the consumer medicines information (CMI) for individual vaccines. This information is presented in the shaded box for each vaccine under the disease-specific chapters in Part 4 of this Handbook (current June 2012); however, it is important to note that PIs and CMIs are updated periodically. The most current versions of the PI (and CMI) for vaccines (and other medicines) are available from the TGA website (www.tga.gov.au).

I don’t use preservatives, emulsifiers, surfactants, residuals or adjuvants in the rest of my life. I have no idea why we think it’s OK to inject them into our bodies, but hey… the scientists know it’s safe right?

Hmmm… ‘safe’. Let’s look at safe.

Read this to see how vaccines are safety tested: TGA Vaccine Regulation Overview

(TL/DR: tested by the manufacturer, not an independent body or a government body, but by the manufacturer who stands to make untold millions from the acceptance of one vaccine into the national schedule. Not duplicated or validated, not even reviewed, simply viewed by an Advisory Committee and ratified. Not tested in combination with the other vaccines already in the schedule. Privately tested and risk assessed in the hen house, by the fox.)

The best possible outcome is that epidemiologically (statistically across the population) a vaccine can be shown to cause a minimal percentage of AEFIs – adverse events following immunisation.

Then, once they are added to the schedule, there’s the question of individual safety – actual AEFIs to consider.

The information no-one wants to acknowledge, is that adverse reactions to vaccinations happen. They, as the epidemiological (AKA ‘safety) data states, are uncommon. They are not, by any stretch of the imagination, statistically rare. Especially when you consider how few are reported and that even fewer are acknowledged.

Billy is someone who experienced a series of adverse reactions to vaccinations. Despite this, we were encouraged to continue. We did. He is now permanently disabled.

Would he always have been disabled? As his parents who have lived in such close proximity to him and his development, we do not believe so. We do not think there is anything close to evidence to prove he was ‘born disabled’ (and we have a LOT of video to back up our lived experience). Would he be ‘less’ disabled had we made different choices? Potentially.

Hilariously (and I mean that in the non-hilarious sense) many people feel a perfect right to insist we are wrong (and oddly NONE of them are doctors). The doctors, at least the experienced ones who have lived and worked for a long time in the company of children like Billy, absolutely agree with us. In fact, they were the ones who suggested it to us.

The most recent available Australian data on reported vaccine reactions is sobering.

Here are some facts:

“The overall AEFI reporting rate for 2011 was 10.4 per 100,000 population, compared with 17.4 in 2010. The AEFI reporting rate was the third highest for the period 2000 to 2011, after peaks in 2010 (17.4).”

It happens. It happened to us.

I’m not even close to saying all vaccination should cease, but that is only because I do not understand enough to say anything like that with any confidence. It’s clear to me it was not safe for us, and for a long time our doctors insisted it was, despite clear signs to the contrary.

I think we should find out who vaccination is safe for and who it isn’t safe for. Then, when people make a choice, they are making the right one for them – not for the economy, not for the statistics, not for their access to government benefits, but for their individual child’s health.

There’s no arguing that people dying unnecessarily of serious disease is something we want to prevent. Vaccinating abundantly against childhood diseases that rarely have serious side effects and against conditions that we may have very little chance of being exposed to… seems like economically driven overkill to me.

Let’s look at measles and hepatitis B.

The government’s own figures on the risks of serious complications from measles make it very clear that the risks of serious complications are low in unimmunized people. They are lower in immunized people. So, you can still get measles if you are immunized, according to the government. If you get measles naturally and fight it, you are immune for life.

So, now we are onto the issue of vaccination being ‘effective’. It obviously is, in the short term, for some people, but clearly, immunity is not guaranteed. If it was, vaccinated people would not get measles, and boosters would not be necessary.

There are numerous documented cases of disease outbreaks among vaccinated populations, highlighting the short term effects of vaccine mediated immunity –
Mumps
Measles
Chickenpox

Along with numerous simple analyses of the validity of herd immunity and the relationship between vaccine mediated immunity and passively acquired (maternal antibodies) immunity.

People are questioning, because there are valid questions to be asked. Big questions and little questions, broad societal ones and specific individual ones.

Hep B, is an easy vaccine to question.

The government’s own information on Hepatitis B explains how it is transmitted:

– perinatal transmission from infected mother to neonate (vertical transmission), usually occurring at or around the time of birth
 – parenteral or mucosal exposure to infected blood and other bodily fluids; common scenarios include:
* sharing of contaminated equipment that penetrates the skin, such as needles (among persons who inject drugs), tattoo equipment, body-piercing equipment, acupuncture equipment and razor blades
* needle-stick injury, for example, in a healthcare setting
* contact between infective body fluids and mucous membranes
* sexual contact (including vaginal or anal intercourse, although the latter is associated with a higher risk)
* non-sexual contact with an infected person (horizontal transmission), including household transmission, for example, child-to-child transmission through contact between open sores or wounds.

So… if I, as a mother was not infected (easy to ascertain) and had no plans to expose my child to anyone who was infected (again, easy to do), or to anyone who engages in any activity that might involve needles, razor blades or sexual activity with infected people (haven’t let him exchange bodily fluids with anyone like that yet) then he, as a newborn baby was vaccinated against hepatitis B because…

(INSERT YOUR ANSWER HERE BECAUSE CLEARLY THERE’S A GIANT GAP IN MY COGNITION THAT NEEDS FILLING)

So, vaccination not safe for everyone. It’s not effective for everyone. It is not simple for everyone. And there are some bizarre aspects to it that make no sense at all.

The issue here is very clear.

Whether you vaccinate or not is your business. However, it is a decision that requires thought and analysis. The decision cannot be made by your doctor because they are not you. The decision has to include your medical history and your family’s medical history.

It is a risk.

For some of us, the immediate risk level may be very low and for some that risk is very, very high. We do not know, with anything even resembling surety who is who (though I, personally would suggest anyone with a family history of auto-immune or metabolic issues or previous vaccine reactions could be given their own personal red flag right now).

If you have vaccinated and your child is OK, you are fortunate. Maybe a little, maybe a lot… but you are fortunate.

Maybe, rather than assuming people who choose not to vaccinate are idiots (acting on opinion, believing things that are not true, socially irresponsible), consider their position. It’s different to yours, but so is their DNA, and that is a crucial difference for many many reasons.

If vaccines work, then you are safe from infection. Then again, if vaccines worked, my son would not be disabled.

See what I did there?

It’s not simple. It’s not about facts or myths or right or wrong. It’s not black or white.

Life is full of grey, and this issue is among the greyest.

Now, go and play with your healthy kid. I’m here to answer any questions you have about our story (as long as you don’t threaten to vomit on me like the lady in the chemist).

PS. I truly hate that now that I have posted this, I am ducking for cover, awaiting the trolls and the nonsense that comes from posing questions about vaccine safety. May I remind everyone that I’m not even remotely interested in arguing. Accept the truth of my story. Take it elsewhere and use it for fodder if you wish.

But, please respect our position. We did not ask to be here, but now that we are, we think it irresponsible to remain silent, for all sorts of reasons.

We really need to get better at this.

Unlucky…

In Action, Diet, Environment, Medical, Parent issues, Research, Supplements on September 8, 2013 at 2:33 am

Today, in Australia, we have a new government.

It’s not the one I chose, but it’s the one I’ve got, so I’ve got to work with it… Which is kind of how I feel about the lot my kid has been handed, health wise.

The doctors say he’s unlucky. We believe something different.

Sure, we may have passed on some things that made him vulnerable, but the choices we made (under medical supervision/duress) have not helped. We were uninformed, inexperienced and like so many others, we did as we were told – because we were assured it was right, by people we trusted.

Add that to an increasingly toxic world, poor poor nutrition dressed up as health food, completely unnecessary household protection products pervading every part of us… and maybe it’s easy to understand why we have a chronically ill child.

He’s not unlucky, he’s been forced to play a game where the odds are actively and massively stacked against him.

For the uninitiated, my excellent son Billy is autistic (atypical, verbal, sensory, intellectually delayed and yet defined HF).
He has GI issues (atypical, chronic constipation and reflux, not coeliac by the traditional numbers but completely unable to tolerate gluten as well as dairy/soy/additives).
He had an auto-immune disease called Transverse Myelitis (atypical, sensing a trend here?).
He has seizures (frontal lobe, mostly generalised, tonic clonic and… atypical).

We’ve managed the GI and auto-immune fallout with diet and supplements – GFCFSF, low sugar, no additives, omegas, probiotics, enzymes – the basic stuff. The seizures are almost two years old, and we are still in the process of navigating through the world of anti convulsants.

The first medication of choice – Epilim (depakote) failed to control the seizures so we increased the dose. It packed weight onto his body then just as quickly stripped it off, sedated him, sent his TSH levels skyrocketing and as an added atypical bonus gave him OCD. It was the OCD that convinced the neurologist to change medications, not because he was concerned (lots of autistic kids have OCD), but because we were.

The second (and current) medication, Keppra, isn’t controlling the seizures either and has induced what’s known in the trade as ‘keppra rage‘, or atypical behaviour changes common in autistic kids (if you are a neurologist). His recommendation? Increase the medication, to see if it will control the seizures. We really have to comply, at this stage, as the non-pharma options require failure of at least three medications before the neurologists will mandate their use. And, yes, though every instinct is screaming caution, we trust the neurologists. They are genuinely good, open minded people and they are a critical part of all we’ve got.

Billy’s tonic clonic seizures are infrequent (every couple of months), happen mostly, though not exclusively, when we are away from home and last up to three minutes (which, oddly seems like three long, slow hours). They could be much worse, which is heartening in a truly unexpected way. The doctors say there’s no real way of knowing whether something is causing them, or whether they’ve been there all along waiting to emerge (the ‘unlucky’ theory).

I know I write a lot about wondering why this is happening to my kid, but seriously, the question never gets old.

Mainly because I can’t help thinking that ‘He might just be unlucky’ isn’t much of an answer.

It’s not much for him, who has a long life ahead of him, with much medical challenge and little medical wisdom. It’s not much for us, who are frantically trying to plan for that life in the now, and in the never-never that does not include our presence. It’s not good for the many many people who share his challenges in a country and a world that can do so much better.

So, while the blue light folk are sharing peace, love and awareness (oddly without the mung beans which are GFCF and therefore unsupported by evidence), I’m keen to spread the ‘why?’

We have a new government in this country, which makes this as good a time as any.
We have a fast growing cohort of ‘unlucky’ kids – young people diagnosed with a condition that their parents didn’t have, that limits their life journey in myriad ways, that has no known cause or treatment.
We have to do something, right?

In the lucky country – hell, in any country, it’s not good enough.

So, my plan is to see if we can convince the economic rationalists that addressing autism causation will save them money, that knowing what it is will help us prevent it and the massive costs it manifests in the education/healthcare/social services sectors, that leading the world in interventions that actually reduce those costs would shine a positive light on them and their time in government.

If an election proves nothing else, it proves that luck has nothing to do with anything. It’s about strategy, focusing on the relevant information and pushing and pushing and pushing until you get the change you want.

Our new Prime Minister is definitely aware how that works…

I’ll play his game, if it gets the result for our kids. All I need to do is encourage him to understand how he could stack the odds in their favour.

And learn how to speak conservative without a bad smell look on my face.

I’m not sure which one will be harder.

Why?

In Action, Parent issues, Research on August 15, 2013 at 6:13 am

Some days, being an autism parent is like living in a hall of mirrors.

On the one hand, there’s the simple fact that your child is disabled. It’s really very simple, as a fact. Hilariously, despite the very apparent presence of disability, many people genuinely try to convince you it’s not disability after all, but some fluffy gift from the benevolent gods of quirk.

On another hand, there’s the future. It’s an oddly cloudy mix of maybes and pleases and probablys and of courses. It’s slammed in front of you all the time – when policies change, when friends celebrate life transitions, when family do what family do, when a child somewhere perishes in the face of life pressures they don’t understand… because they have a disability, or a gift (whichever).

In another hand (we are in a hall of mirrors after all), there’s the ever present question ‘why?’

There isn’t much in life that so confrontingly mixes viscera and emotion like childbirth. Maybe death. Maybe the odd violent hangover where the responsibility for your actions burns as you hurl it into a suitable receptacle.

Parenting is highly emotional and highly practical at the same time. The whole experience is based on hopes and promises, even though the practice is all about ancient wisdom and established routine. There are no guarantees, that’s for sure. You get what you get, no matter how consciously you sign up.

But there are lots of days where I wonder why so many people got autism. What did we do, individually and collectively, to bring on a wave of autism diagnoses?

Yesterday, I listened to a woman on the radio talk about the rise of type 1 diabetes among children in Australia. She said the trends and the analysis of those trends makes it abundantly clear that we (humans generally) are causing this – that a combination of genetic factors are combining with environmental and social factors resulting in the medical condition we call diabetes increasing in children.

And as I was listening, I kept on thinking, why can’t we acknowledge this about autism?

Why is our current autism research (especially in Australia) not focusing anywhere close to this?

Instead, we seem hell bent on pretending it’s either not happening, it’s the trendy choice of over-protective and under-realistic parents or it’s a random fall of some dice that none of us knew we were throwing?

As a parent, as a person who had the great privilege of meeting someone lovely and making a conscious decision to bring another human being into the world, just as a human being… I really want someone to stand up and seriously look at why my child is autistic.

I’m willing to help find an answer. I’ve been working my ring off up until now, with limited success, so I’m thinking smarter heads could prevail.

It’s not identifiably genetic, in our case. The geneticists are very clear on that.

It is heavily medical, in our case. Our bank account will attest to that.

It’s unlikely to be a gypsy curse, as I am not a gypsy, haven’t had my fortune told and have never owned a black cat.

So, why?

What did I do, in my life?

What did we do?

What did people around us do to contribute?

What did my mother, her mother, my father, his father do?

What could we all have done differently in order to avoid an eventual diagnosis of autism in my son?

It’s a fair question. It’s a fair set of questions. And in my mind, until we all start to answer them, we are never going to make any progress in preventing autism.

It starts with us.

We need the doctors, or the politicians and the academics. But it starts with us. Without acknowledging our responsibility, without understanding our responsibility, it’s almost impossible to know where to go next.

I’m not talking about feeling guilty or blaming ourselves, I’m talking about doing what you would do in any situation where something has gone wrong. And yes, FWIW, I believe having a child with a disability isn’t an ideal outcome. It’s one I accept with everything I have, but not one I would choose if choice were possible.

I’m talking about sharing experiences, asking questions, and expecting reliable advice to find answers.

Every day, ten new studies are publicised that shine a light into some corner of life that may be relevant to autism causation – maternal antibodies, thyroids, epigenetics, vaccines, nutrition, pollution.

Every day, people who do not believe those studies reflect their experience or view of the world, deny the relevance of those studies. Then every next day, people turn on each other, claiming their ideas are bogus and they are variously uneducated, blind to reality, hoodwinked, brainwashed, dangerous (insert your own thoughts).

And in the middle of it all, are our kids. Once well, now not. Treasured and valued. Inexplicably disabled.

Can there ever be a point where this generation of autistic kids cease being a political, ideological, intellectual, virtual football?

Do we even want to fix this?

I do.

I do, because it’s not a theory for us, it’s a stark scary reality. I do, because my son’s prognosis is not getting better, it’s getting worse. I do because parenting is a big enough job for anyone, without adding a giant hulking ‘stand by for repeated surprise smacks on the metaphorical head’ to the list of jobs.

I hope there will be a time soon where I can play an active part in de-footballing my son, and many kids like him. I hope in the process of doing that, I can protect future kids from being unnecessarily disabled. I hope that when I do advocates for disability rights and public health and nutrition can put their own agendas aside and listen.

Just listen.

This happened to us. It happened to lots of people we know. We don’t know why it happened.

We have no reason to make up lies. We have every reason to want to know more about what happened. We have every reason to want to know how to make it better. We should care about preventing it happening to other people.

We are at a point in history where the provision of autism related services and the positive portrayal of autism have been promoted as the most important autism related issues. While there’s no doubt those things are crucial to people living with a current diagnosis, it is bizarre to me that they have been actively used to obscure the process of understanding what autism actually is.

We have put the cart so carefully in front of the horse, that it’s hard for the casual observer to know there is, in fact, a horse.

It’s bizarre to me that we are not collecting data from families of currently diagnosed children about their life choices, their families, their medical history. Worse, we are not listening when people try to articulate their experience. Instead, we are telling families that what they think happened, did not (could not) happen.

There are other points in history when similar things have happened in relation to the health of children. To be fair, when a lot is at stake, it probably makes sense to turn a blind eye. An open, analytical, intelligent and compassionate eye would see way too much.

In my mind, we are letting our kids down. We are letting ourselves down. It might be hard to face whatever reality we uncover in terms of autism causation, but where we are now is no bowl of cherries either.

We’ve done awareness. We’re doing acceptance.

Now, let’s do why.

So the next generation can leave the horse and cart behind and get around in one of those flying cars The Jetson’s had.

____________

If you are willing to tell your story to Australian politicians (in person, on video or in writing), PM me at Information About Autism on Facebook and I’ll send you some options. We’ll collect people’s stories and present them after the election. All stories welcome, international perspectives carry a lot of weight at this end of the world.

Be afraid… be very afraid…

In Action, Medical, Parent issues, Perceptions on July 29, 2013 at 4:46 am

In May this year, I wrote a letter to Disability Reform Minister Jenny Macklin.

My letter was in response to her assertion in this article that following Early Intervention 50% of children with autism will be ‘educationally normal’ (whatever that means).

Today, I got a response.

I’ll insert it here as a series of pictures, because I don’t have the tech skill to do anything else.

All I will say is if you have a newly diagnosed child in Australia, be very very afraid.

The people in charge are not even remotely up to speed on what autism actually means.

Image

Image

Image

Image

One response… (though there could be so many).

Does anyone know anyone with a child diagnosed with autism whose needs disappeared after EI? Because it seems like the government is relying on there being quite a few of these stories, and I don’t know one.

And (I lied about the one response thing)…

With all your careful tiptoeing around first person language and care to assure me you are empowering people, Kate Costello, could I suggest you do not refer to the early medical care of my child as an ‘investment’. It kind of gives away the idea that you aren’t really valuing him as an individual. At all.

Off to buy a lottery ticket.

The Epidemic Is Wearing No Clothes…

In Action, Perceptions on July 6, 2013 at 10:05 am

This article was originally published in the July 2013 issue of Autism World Magazine.

When my child was paralysed from the waist down with an auto-immune disease, people told me it was a gift. When he needed adult doses of laxatives to maintain bowel function at 6-years-old, they said ‘that’s going to set him up for his University years.’ When he shook uncontrollably and foamed at the mouth while he slept, people said ‘it’s just quirks.’

Actually, they didn’t. No-one would.

Maybe they wouldn’t because I would have punched them in the mouth (and I am not a naturally violent person). Maybe they wouldn’t because it would have made no sense.

And yet, the condition that umbrellas all those events, autism, is considered lightweight; nothing to worry about; nothing but a natural evolution of human brain engineering.

Just like the naked King in the kid’s story, a respectable and placatory fiction is paraded in the faces of autism parents  – autism is not an epidemic.

Although anywhere between one and three per cent of the world’s child population now carry an autism diagnosis we are told autism is not a problem;

Although this rapidly increasing cohort of children have a massive range of compromise in communication, learning abilities, social functioning and life skills, we are told autism is not a cause for alarm;

Although children live with debilitating, gastrointestinal conditions, auto-immune illness, seizures and food/drug intolerances, we are told autism is just a harmless quirk;

Although children die after wandering from the safety of home or school;

Although children die at the hands of desperate, derailed or ill-equipped carers;

Although children die at an increasing rate;

Autism is not an epidemic.

It’s almost as ridiculous as my pretend illness conversations, except it is actually happening.

As many of us have said many times before, if autism was diabetes, we’d be launching international preventative campaigns. If autism was cancer, we’d be making heart wrenching music-laden slo-mo news features about protecting vulnerable babies. We would want to know why it’s happening and how we can stop it.

Measure it by CDC acknowledged diagnosis (1975: 1 in 5000 2013: 1 in 50)

Measure it by deaths (four autistic children drowned in the last two months in the USA alone)

Measure it by economic impact ($3.2m is what’s needed to fund an autistic person’s lifetime care according to the Autism Society of America, with a predicted 500 per cent increase by 2030)

Autism is on the increase, and its impact is widening exponentially.

We are undeniably in the grip of an epidemic.

Of course, it makes much more sense to push such thoughts to the back of your head. A lot of us don’t take kindly to having our lives described as a catastrophe. It’s confronting to think we might have made poor decisions. It’s really scary to think we might have been ill-advised by professionals we are bred to trust.

Let’s think about it this way.

Many of our children are not coping with childhood. We’re happy to bleat on about the inadequacies of the systems that provide them with therapy, health and education. We force them through those systems because we are told that’s what we should do, and we are somehow assured the strategies employed will work.

They are not working in any way, shape or form.

Kids are struggling with basic life, learning and health. More children are diagnosed every year. The ranks are growing every year.

I’d like every reader to nominate 10 kids who have, through educational strategies, lost their autism diagnosis, attend school without support and live life with zero supports, accommodations or quirks.

What’s that? You can’t? No, neither can I. The only people who can are service providers and politicians. Funny that.

Here’s some of the anti-‘Houston, we have a problem’ spin they spin for us:

–   it’s insulting to use ‘disease language’ when autistic people are happy just the way they are.

To which I say, this simplistic nonsense allows every doctor my seriously ill child sees to say “It’s just autism, Mum.” So, it’s insulting to him (also autistic) to deny him the medical care  he requires. Are his rights any less than the rights of an adult self-advocate? Of course not. As sibling advocate Natalie Palumbo said in her 1 in 88 video “If you can argue against a cure, you don’t need one.”

Also, I’m not in the habit of looking down on sick people. I don’t know anyone who is.

–   it’s all better diagnosis, these kids have been around forever and they’ve been ignored, pushed through the system anyway or institutionalised.

To which I say, really? Where are all the autistic adults, to match the autistic children they must have been? Where are the teachers who ‘pushed’ these kids through despite challenges that confound contemporary, well-trained and skilled teachers. Where the hell are the gifted doctors who are suddenly able to display sensitivity and insight that very, very few of us see and all of us need right now.

Also, name me 10 autistic kids you knew when you were 10. OK, I’ll make it easier, name me 10 autistic kids you know now.

–   it’s all about changing diagnostic criteria.

To which I say, okay, so the steep rise should have happened in 1994 and in the years immediately following, and then levelled off, but it didn’t.

Also, the issue of changing diagnostic criteria will hit us soon, with the DSM-5 cutting out all the Aspies under three. Still with the same massive additional needs, but no diagnosis, so poof, the epidemic is gone. If the changing criteria logic works, then what was the aim in expanding the criteria in 1994? Creating work for therapists?

–   it’s genetic.

Purely genetic conditions do not accelerate from 1 in 5000 to 1 in 50 in one generation. Medical conditions do.

Actually, this spin is insulting my intelligence, and it should be insulting yours.

Most of you are parents who saw your child or a child you love struggling so you sought help. Are we honestly saying that parents in the past simply ignored their kids’ struggles and went on drinking highballs?

They didn’t ignore it because we all know, it’s impossible to ignore.

If you need a framework that’s less histrionic than mine, Google ‘Nature Magazine’ and ‘Karen Weintraub’ and ‘November 2011.’

If you need to get over the semantics, Google the definitions of the word ‘disease’ and the word ‘epidemic.’

We are surfing a wave of epidemic, and the only reason we think we aren’t is because we don’t want to be.

Denying the autism epidemic is giving approval to governments, doctors, educators and service providers to NOT respect your child’s needs.

It is saying it is completely okay for more children, maybe more children in your own family, to have autism.

It is saying you are happy to foot the bill – the $3.2 million per 1 in at least 50 of the world’s population, for their lifetime of care and support.

If you are happy for these things to occur, then perhaps you should join the parade. I believe there’s a fine ermine cloak on display.

If you would like to purchase Autism World Magazine, subscribe to the digital download via this page http://www.autismoz.com/purchase-2/ or if you have an iPad download the free app then purchase/subscribe from within the app.