Valerie Foley

Archive for the ‘Medical’ Category

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– Developed rubella from the MMR (still not out of the realms of ‘normal’), came out of infection silent and withdrawn.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.

Surely we can do this better…

In Medical, Parent issues, Perceptions, Research on May 22, 2014 at 1:51 am

On 19 May, 2014 mainstream media put an issue to bed.

Vaccines don’t cause autism. Once and for all. Let’s all accept the truth and move on.

The headlines were based on a paper published by the University of Sydney. My hometown. A great university. My interest was piqued. Oddly, it was produced by a research unit within the Discipline of Surgery, but it’s got the university logo on there. Seemed legit. The author appeared on the radio, soon after, and spoke to his paper. It was an unusual interview but again, I’m involved and interested… so I went looking for the paper.

It’s called ‘Vaccines are not associated with autism: a meta-analysis of case-control and cohort studies’. And unless you live in a box, you will have heard something about it over the last couple of days.

This paper is truly one of the oddest things I have ever seen, and I have seen a few odd things.

From its curious authors, the vehemently inaccurate promotion of the paper, the gleeful grasping of spuriously false headlines and finally, and most importantly, the paper itself… in my opinion, it’s the academic embodiment of the Chinese ‘interesting times’ proverb.

Let’s take a look.

First though, read the paper. Right through. Follow the links to the studies it references.

Follow the links in this post. I’m not trying to make anyone think anything, and I could care less how people process their own choices.

Clearly I am pro-vaccine safety. What you are is your own business.

Give this some time. It actually deserves it, if you genuinely care about whether there is indeed a link between vaccines and autism.

 

First, lets take a look at the authors.

Luke E Taylor (1)

This individual, the number one author, is a bit of a mystery. He doesn’t seem to come up on PubMed, apart from this article.

Could be this guy, a recent graduate of Brown University. He’s listed as a ‘senior’ in 2013. I’m assuming they don’t mean me to insert ‘citizen’ after that. He’s very interested in coal divestment.

Or it could be some mysterious unpublished very recent graduate of an Australian university. See Amy L. Swerdfeder, below.

 

Amy L Swerdfeger (1)

She seems to be a recently graduated medical student, with a Bachelor of Surgery completed in 2013. No stated link to autism or child health. She contributed to this paper as a student, one would assume, unless the paper was thrown together in three months, which would surely be problematic, in academic terms.

Previous to her medical study, Amy was a chemical engineer with Roche. She has one publication listed on PubMed. It’s this one.

 

Dr Guy D Eslick (2)

The man is an epidemiologist. His stated research interests on the University of Sydney’s website are:

My research has primarily focused on determining risk factors and understanding the epidemiology of gastrointestinal diseases for the most part upper gastrointestinal cancers, predominantly, esophageal cancer and related disorders. I am also interested in understanding the epidemiology of Rare Cancers.

He’s highly published, very experienced, clearly credible in his field.

Am I the only one who thinks it’s odd that his field has never included autism, childhood disease prevention, autism… any of the stuff that would indicate an interest in this paper. Dr Eslick says in the New York Post he was inspired by watching ‘medical documentaries on the issue’… Which seems totally legit, because research dollars are just lying around on the floor of universities and inspired TV watcher-academics can just pick them up and use them for whatever.

 

To summarise:

The two lead authors have NEVER published (well, at least they don’t exist on PubMed and we’re told that’s where we should be looking) and unsurprisingly have not spoken on behalf of the paper in the media. They may or may not have been students when the paper was created.

The 2nd author, sometimes referred to as the ‘senior author’ or ‘corresponding author’ (presumably because he might be the only one with a current paying job in the field of academia) is well published, in other fields of medicine. His children had febrile seizures post vax, but he wasn’t scared away because he gave them paracetamol they are just fine now. Pretty solid proof that vaccines don’t cause autism, right? Well, solid enough that he included that little anecdote in the paper.

He spoke so poorly in the media on behalf of not just the paper, but the general area of autism causation, he may as well have not turned up. FWIW, if you are going to slam Wakefield (and it’s totally your right), it would make sense if you slammed as though you had read the retracted paper. Then you would be able to slam it accurately. TL/DR… it doesn’t mention not vaccinating kids. Not once. Even though you claimed it does on radio.

If a transcript or podcast for Guy Eslick’s interview on the ABC appears, I will link it, but aside from a lot of odd mumbling… he said something very unusual in an interview with Richard Glover on ABC 702 (our public broadcast station here in Sydney).

He said the paper references a study comparing autism rates in vaxed and unvaxed children. (It does no such thing. It references a study comparing children vaccinated with thimerosal containing vaccines and vaccines containing no thimerosal. A very very different thing).

A vaxed vs unvaxed study is the one thing that has not been done, and is the one thing that is being consistently called for by both the autism community and concerned members of the US Congress.

Why would a professional epidemiologist, ‘inspired’ by something he’d seen on a screen, make a mistake about an important key finding of his own study?

 

Then there’s the paper itself.

Touted in the media as a study that blows the lid off the idea that vaccines could cause autism, a study that involved over 1.2 million kids and a triumph for Autism Speaks (my personal favourite given that their only involvement unless there’s something going on that I can’t identify was to promote its publication on their website).

It’s not a study. It’s a meta-analysis. Calling it a study is like calling a cardboard shanty town a brand new housing development.

It’s not new information, and therefore not anything resembling news. Being a meta analysis, it collates and reviews old information. That’s the point. The idea that the autism community would somehow benefit from the arbitrary collation of information that most thinking parents are very familiar with and have ready access to is perverse to say the least.

It isn’t published by anyone with a link to previous autism research or vaccine science and works very hard to state its independence and lack of conflict of interest. Given its publication under the auspices of the University of Sydney, the authors should not need to state within the paper that they don’t feel remotely conflicted. Unless, of course, the lady doth protest too much.

Autism Speaks pushed this baby hard. So much so that their news release was shared 34.5 thousand times on FB (as of 3 days after they released it). Compare this with 737 shares of an older passionate John Elder Robison plea to self advocates, and 559 pitiful clicks for a gut bacteria article.

 

The content of the paper raises many hairs located on or near the back of my neck, as well.

Studies that drew their cohort from actual VAERS reports were excluded.

Papers that recruited their cohort of participants solely from the Vaccine Adverse Event Reporting System (VAERS) in the United States were not included due to its many limitations and high risk of bias including unverified reports, under reporting, inconsistent data quality, absence of an unvaccinated control group and many reports being filed in connection with litigation.

So, actual studies involving individual people who managed to get their adverse event report through the system (no mean feat) were excluded because of possible bias. But studies funded by public health officials, with legitimate vested interests in promoting universal vaccination and companies with stated interests in the area… they were a-ok. On other matters, I wonder, if VAERS is a cesspool of bias, where is the reliable information relating to adverse events in relation to vaccine administration? I guess it… um… doesn’t exist.

On VAERS, a fine system if you can kick it into gear, I hear, the authors seem to have forgotten something. It’s American. The authors are Australian, and while I fully concede the internet brings us all together in an amazing way, it doesn’t make us all American. Why an Australian epidemiologist would, in the conclusion of his paper, encourage me (an Australian reader who lives in his city) to make a report of an adverse event following vaccination to VAERS is beyond me. We have a fine system here called AEFI. It’s a different system as our governments are distinctly different. Unless, of course, the paper was not written for me, but for a distinctly American audience. Odd, as it includes in its analysis papers from the UK, Europe, and Japan (and strangely, no Australian data). Also odd, as it is a paper from the University of Sydney, but yay for globalism.

 

It’s a study of statistics.

Epidimiology is a wonderful field, that has saved many lives by analyzing and predicting trends in disease. But is it the best way to view the potential safety of individual vaccines on individual human children?

In my experience, using statistics to analyze and predict the safety of a vaccine to an individual child (because that’s what it comes down to when you do the ‘vax hold’ on your baby in the GP’s office) is an interesting tactic.

It’s like telling someone who is just about to slam on the brakes because a semi-trailer has jack-knifed at high speed in front of them, that its OK because this stretch of road has had less accidents on it than the road they took yesterday.

The two things are related, and semi relevant to each other,  just not in relation to the actual decision at hand.

But it’s powerful hoo doo for the family driving down the same stretch of road tomorrow. It’s way safer than the alternate route, statistically. So their chances of making it to Grandma’s house in one piece are high.

It means very little to yesterday’s driver. But very little means much to them, as they are (best case scenario) recovering from a serious road accident.

 

It’s spurious science anyway.

A couple of quotes from the paper that make me go, ‘Hmmm…’

“The only review to suggest that a link could not be excluded was that by Ratajczak looking into the aetiology of autism and concluded that it is multifactorial involving genetics and/or inflammation of the brain caused by a wide variety of environmental toxins, one of which may be mercury.”

Aaaaaaand, this isn’t significant because…? In a selective analysis that excludes studies of actual adverse events, one related study backs up the concerns of parents worldwide and it’s not significant because it’s only one of lots that say other things, statistically.

But sure, no link. Whatevs. No link in any of these either, right?

 

“Studies were included that looked at either MMR vaccination, cumulative mercury (Hg) or cumulative thimerosal dosage from vaccinations to ensure all proposed causes of ASD or regression were investigated.

ALL proposed causes of ASD or regression? That’s a broad church. One that is not even remotely charted by looking at three very limited issues.

 

“While at the level of the individual avoidance of immunisation may be seen as conferring lower risk by avoiding possible associated adverse events, the increase in parents deciding to take this course of action has substantially decreased ‘herd immunity’ among populations, subsequently increasing the risk of catching potentially more serious infectious diseases”

Apart from being the world longest sentence, and virtually impossible to decipher… I need some references on this one. How do we know parents choosing to not immunize because they want to avoid possible adverse events (and not because of their religious beliefs, social morays, they fear needles) has substantially decreased ‘herd immunity’. And while we are at it, why put herd immunity in inverted commas? Unless it might not be a totally reliable medical thing, but a very effective marketing strategy. After all, life long immunity from a naturally fought infection doesn’t require booster shots for anyone in the herd.

While I’m on this paragraph, how do those infectious diseases become MORE serious as a result of people choosing not to vaccinate against them? I’d really like a reference on that.

 

Finally, the title of the paper. ‘Vaccines are not associated with autism: An evidence based meta-analysis of case-control and cohort studies’

Good solid stuff right there. Sends a clear message to the punters.

It does however fail to acknowledge that the paper looks at studies that looked at the MMR, DTP/DT (known as DTaP in Australia) and ‘thimerosal-containing vaccines’. So, the other vaccines, the ones that don’t contain thimerosal, Hg mercury or aren’t the MMR (that would be the vast majority of the Australian vax schedule)… those ones are OK? Aren’t vaccines at all? Must be fine because these ones are totally OK?

This is really really dodgy PR. It’s not information parents can use to feel safer about the relationship between vaccines and ‘autism’ or the actual risks to their individual child.

Well, not if you look past the sound bites.

And if you do want to look beyond the soundbites, please please look here. Heather White’s detailed analysis of the science behind in this study is seriously the most useful thing you will read on this matter.

 

My questions.

1. Inspiration aside, why would academics, under the pump and struggling for resources, develop and  publish a paper on a subject area that is not their own?

Unpublished number one authors, total lack of experience in the area the paper focuses, odd American slant on an Australian university paper… what’s going on here?

This is like getting a caterpillar to teach nutrition because it likes to eat vegetables. It seems like a cute and semi-credible idea, but really it’s just plain odd.

 

2. Why did this paper get so much airtime?

It’s not new information. It’s all accessible. It ignores actual studies based on actual reports of adverse events reported in the USA. It ignores data from its own country.

Leave aside the science, and just look at the methods. This isn’t world shattering stuff, simply a new look at old data.

And yet, almost thirty five thousand shares from AS alone, in three days. 3.5 thousand hits on a google news search.

 

3. When people around the world, including Australia, have children whose major post vaccination afflictions include seizures, gastrointestinal disturbance, auto immune disease, encephalopathy, mitochondrial disorders and progressive connective tissue disorders… why do we continue to ignore them?

Maybe because it’s easier to think of those conditions as the mystery meat of developmental medicine than call them what they are – autism. Or maybe because what they are saying is scary. Or maybe because the change that would be required if we listened properly seems so huge, it’s better to let Forbes Magazine call them crazy. Over and over and over. It’s better to shut down rational thought, and replace it with a smokescreen of big words and calmative statistics.

A generation of ‘coincidental’ paediatric collateral damage is not good enough, as an outcome of this ‘discussion’. It’s just not.

I get people’s need to feel safe. I had it too. I felt really safe, before I vaccinated my child. I did the ‘right’ thing. And it all turned to health custard. My son is disabled for life, in a world that doesn’t recognize his disability as chronic, treatable, preventable or medical. That does not make me feel safe. I can’t contemplate what it will do for him when we are gone.

Comparing misery is a dirty game, so ‘would you rather a child with ‘seizures, gastrointestinal disturbance, auto immune disease, encephalopathy, mitochondrial disorders and progressive connective tissue disorders AKA autism or a kid with measles?’ is a very poor argument.

Standing up and asking the real questions, calmly, rationally, without fear mongering and without the might of Autism Speaks denial behind it, might just be a more mature approach.

Don’t you think?

Excuse me while I ask this guy.

 

Image

(OK, he’s a worm… damned internet, misrepresenting the ‘truth’ again)

 

 

 

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)

 

I listen to the radio…

In Medical, Parent issues, Perceptions, Research on February 19, 2014 at 8:10 am

I’m a big fan of public radio. I have been for as long as I have had control of a radio dial. I was the nerdy teenager who fell asleep to Phillip Adams and not Duran Duran.

Now I’m middle aged and I sit in the millieu comfortably in so many ways. Except for one.

I have a child with chronic medical conditions and lifelong diasabilities. The letters after his name include ASD (autism spectrum disorder), TM (transverse myelitis), JFLE (Juvenile Frontal Lobe Epilepsy), CTD (connective tissue disorder) and GI (gastro-intestinal) issues. He has hyperacusis, cochlear dehisence and immune-defficiency. He also has a wicked sense of humour, astonishingly beautiful eyes and a heart of gold.

When I listen to the radio some days, I find myself muttering like Dick Dastardly.  As I supervise my son’s education, cook his customised food and clear up his discarded trains, I yell at my beloved radio without realising. I’m reacting to the fact that so much of what we are presented through the media is delivered with little acknowledgement that there is difference in the world – different abilities, different lifestyles, different journeys through life. There’s the odd mention of LGBT issues, occasional disability stories but, for the most part, the underlying broadcast assumption is that you (the consumer) are on the road more traveled.

Mostly, after my outbursts, I say to myself ‘Get over yourself. They have to cater for the majority. They can’t cover everything and everyone.’ But today, the radio was talking about something that was meaningful to us. They were talking about personalised medicine – genetic testing and its consequences.

So I called in, I spoke to Richard Glover‘s producer and I waited my turn. Alas, time ran out, but if I had been able to speak, here’s what I would have said.

“My son is a cracker of a kid. He works harder than anyone I know to take the developmental steps that all his same aged peers take for granted. He sees himself as the epitome of 10 year old boy-ness, which is exactly how he should feel.

Every night, however, he falls asleep not knowing if his deepest sleep will be interrupted by violent seizures. He doesn’t know if he will wake in an ambulance or in his own bed. He is tormented by a dog barking two blocks over, his body wracked by the simplest sounds. He shakes violently when he tries to write, both because of a profound motor skill deficit and the medication he must take to attempt to gain control over the epilepsy. He can’t eat the majority of things a child wants to eat, simply because his bodily functions shut down if he does. He adores his friends and yet struggles to keep them, if they are neurotypical, because most kids live in a world where thinking fast is valued over thinking fairly.

Each of his diagnoses came evenly spaced over his life and each as a surprise. The doctors use the phrase ‘struck by lightening’, each time. As though he, they and we are powerless to predict anything about his health.

Don’t get me wrong, his doctors are brilliant people – neurologists, gastroenterologists, immunologists and one of the best paediatricians on planet Earth. And yet, they are at a loss to circumvent another strike.

Until now.

Now, have begun genetic testing. It’s NOT the be all and end all. It’s not a magic bullet. It’s not even a totally workable solution – yet. But it is the first time in this life that we have a sense that we are in control of the weather.

We know practical things like why our son can’t tolerate certain medications and why his Vitamin D levels are so dangerously low no matter what we do. We can fix those easily now. This helps his everyday health, as well as protecting his future wellbeing.

We are discovering theoretical things like which parts of his brain are genetically likely to be strong and which are not. This stops us from chasing rainbows and sends us on more practical paths of intervention.

And most of all, we are discovering that we have responsibility for his health – both in a personal sense and in a big picture sense. It’s not written in stone, by any stretch of the imagination, but it is a code that can help us better understand where we have come from and where we can go safely.

The results may well be confronting at times. But they are no where near as confronting as discovering him frothing in his bed at 1am. The predictions may be a little terrifying, but no where near as terrifying as not knowing why your perfect baby has grown to gather medical diagnoses like other children gather Lego kits.

We know the world he lives in in increasingly toxic. We know we have made well meaning decisions that were not the best for him. We need to know how to protect him so he has even a fighting chance of survival when we are not around. We need to know how to prevent more children having the same range of supposedly un-aviodable challenges he does.

I know if you are not us, it is tough to understand why we are so desperate for reliable answers and guidance. Kids should be kids, and not be burdened by the negative potentials in their future, right?

That is abundantly and beautifully true, if your kid isn’t already burdened by the mysterious ‘lightening strikes’ of disability and chronic disease. Even more true if solutions to their problems can be found in their own intestinal fortitude and not, as my son’s are, by searching endlessly for a ‘needle in a haystack’.

When you are looking proudly at the back of the head of your grown up offspring as they head off on their gap year or through the front door of their very first share house, it’s probably irrelevant that people like us will never have that opportunity.

I say this not to gain pity. We so don’t need that.

I say it to open peoples’ eyes to the fact that we are not all the same. We don’t all treat difference as something to fear. We don’t all experience normality as the norm.

We did not all get the choice to avoid the road less traveled.

Genetic testing and the emergence of personalised medicine doesn’t just help my kid. It helps us all. Small picture, we hopefully start to understand what the future holds for our boy. Big picture, we all start to understand what we can do for ourselves, our kids, our grandchildrens’ grandchildren. If we are lucky enough to have them.

So, if you eschew the genetic testing, fair enough. That is absolutely your choice.

But as you sip that glass of red while wondering if you are becoming drunk Uncle Bob, or stare at a diabolical sudoku and fear you have met your demented destiny… spare a thought for those of us who truly need the testing and for the world to have an open mind about it.

Spare a thought for my son, who tonight will be dodging lightening in his dreams.

And thanks for taking my call and listening. It means a lot.”

They totally would have let me talk that long on talk back radio too. 😉

Why is it so…?

In Medical, Research on November 16, 2013 at 5:03 am

We are faced with a variety of challenges in our lives with autism.

The ones officially known as autism (communication, behaviour, interests, social skills), are the least of them. The bigger challenges, for us, are medical, though they are often conveniently re-sized by being placed under the carpet we call ‘autism’.

It won’t surprise anyone that as the parents of a child who is struggling, obviously, with everyday life, we want to seek help for him. What may surprise anyone a few years behind us on this journey is how freaking hard it is to get the help you need, and how even freaking harder it is to get the help that actually helps.

In the words of Julius Sumner Miller, I find myself asking, ‘Why is this so?’

Short diversion. I love science. As a kid I was thrilled by the egg in the bottle. I lived for The Curiosity Show. I was driven by the idea that there were answers to the things that vexed me, I just needed to think the right way to find them. I have zero systematic thinking skills, and the memory of a very specifically trained butterfly, so a life in science was never going to be mine. But the big picture gave me comfort, and a certain self righteous drive around ‘the truth’. I took those and channeled them into a life of letters.

Back to why getting care for an autistic child is so challenging.

I’m fairly sure that it’s not that Billy’s doctors are lazy good for nothings who are more interested in their golf score than him. In this respect, perhaps we’ve been fortunate.

I’m also fairly sure it’s not because there’s an agenda discussed over the doctor lunch table about shutting the nagging autism mothers down. Again, maybe that’s just because we’re not sophisticated enough in Australia yet, for this to be a policy driver. I’m certain there are many of us the doctors don’t relish seeing.

I’m fairly certain it’s simpler than either of those things.

The mainstream doctors we see, as good as they are, and as at the top of their game as they claim to be, really don’t know what to do. They don’t know what to do for one solid reason. They do not know what autism is. Officially, no cause, no treatment, no cure.

Conveniently, if they care to look outside of their field to the seething mass of service providers set up to placate desperate families, they will learn that autism doesn’t require a cure as it’s not a disorder, or a disease, but a manageable variant of normal that should be accepted and even encouraged by actively NOT treating it medically. Because it’s not a disorder or a disease.

Rinse. Repeat. Go play another round of golf.

While you are there, talk to the Health Minister and see how well he or she has effectively swallowed this framework. It is waaaaaay easier to manage this systemically than address why 2% of your paediatric population are mysteriously and increasingly disabled. So… back to building buildings, keeping trains running on time and such.

Which is fine (I guess) if you are happy for children to be sick without cause and resistant to conventional treatment.

I’m not so fine with that. Not theoretically, and definitely not personally, it being something that directly involves my kid.

So, where are we?

Back with the wire haired professor, (seriously, he’s fabulous, indulge yourself)… why is this so?

This year, faced with intractable epilepsy on top of the GI issues, auto-immune disease and crippling sensory issues, we have made a couple of big decisions. Actually, it may have been expedited by the severe physical and emotional side effects of the epilepsy medication. Or the fact that after YEARS of being told by reputable gastroenterologists that our son (who couldn’t tolerate gluten without losing control of a very important set of sphincters) had nothing resembling a coeliac profile in his bloodwork and so shouldn’t be scoped, we discover that he has the genetic haplotype for coeliac disease (like the multiple coeliacs among my first degree relatives).

Decision 1
Do proper, as much as can be accommodated by current technology, science and finances, genetic testing on Billy.
This has manifested in three separate approaches, which is, I will admit a little over the top, but I’m figuring they can act as their own validity checkers (which will make me feel better while we are eating baked beans cold from cans as a financial result of my actions).

The first is 23andme. A rash decision I made when I had a spare $300. I’m waiting for the results and thinking they will be like an intellectual bone to gnaw on in my down time. Actually I will need a scientifically minded friend with co-occurring down time.

The second is a random letter from our state health service asking if we want Billy included in something called a Genetic Gold Service in 2014. ‘Sure’, we said, at the vague promise of a publicly funded Dr House style program that looks closely at the kids they have met that clearly have something going on, but they don’t know what.

The third is a broad based study of the genetic profiles of children with existing autism diagnoses. More about that as time progresses.

It’s early days in this game, and we have absolutely no idea what we are going to learn.

But we know one thing for sure – we are going to learn something.

Because, here’s the thing.

In traditional medical practice, treatment is pretty much trial and error. Let’s try this medication, and if it doesn’t work, or there is a bad reaction, we’ll try this other one. If you are in robust general health, I guess this isn’t an entirely harmful way to proceed. If you are Billy, and countless kids like him, it’s downright terrifying.

On the most easily understood level, his reaction to epilepsy medication is testament to this. The doctors go, ‘Wow, we haven’t seen that before’, and we take a child home with (a) no viable treatment plan and (b) potentially irreversible side effects and a bonus (c) NFI why or what to do next.

So, just like the coeliac genetic test shows us that symptoms plus atypical bloods plus haplotype means ‘don’t eat gluten’, discovering more about Billy’s make up might just help us understand how other foods and medications/chemicals/supplements may interact with his system.

At least, that’s the logic.

And after all he’s been through, we simply cannot afford to ignore that logic anymore.

I see the cynicism around genetic tests and autism. I respect some of it because some of it is coming from people I truly respect.

I understand ‘it’s genetic’ is a get out clause for the medical profession. To be honest, I think it’s a ridiculous statement. What does it even mean, practically? A long history of no-one with autism, and a few people with mental health issues. Then a generation full of autism. Yeah, clearly, it’s genetic. Cos in the past, some of my family got a little bit of cancer and then in this generation they got lots of it. Not.

If the genetic traits that lead to autism are in my family, given three of my mother’s grandchildren are diagnosed currently, then surely it behooves all of us to find out what the hell those markers are. If I has known there was a strong genetic potential for me to give birth to a child with a lifelong debilitating disability, I would have thought very very seriously about proceeding with the process of procreation. What the outcome of that thought process would be is my business alone, but I would have appreciated the heads up. For absolutely sure.

Moreover, if my child, in utero or as soon as he was born was showing recognizable, medically respected genetic markers for the medical conditions that are the basis for the thing his doctors call ‘autism’, then I could have made very very very different choices about his lifestyle – BEFORE those choices had the impact they did. I’m talking about my diet, his diet, chemical exposures, vaccines, stress factors etc etc etc.

Finally, it’s a simple matter to test us as parents and ascertain what’s ‘genetic’ and what’s ‘epigenetic’, and that’s where the interesting stuff can start being talked about.

I have no time for the eugenics arguments, because I hold absolutely zero concerns about such things. Despite being resolutely pro-choice, I see absolutely no evidence of a worldwide conspiracy to rid the world of any type of person pre-birth, let alone autistic people. I see people making choices, with their own free will. If I see anything dodgy from underneath my tinfoil hat, it’s the opposite of eugenics. The lack of attention to autism prevention makes a mighty profitable future for the medical industry and the grotesque autism industry that has grown up around selling false promise therapies and services to vulnerable families.

The key for us is that every single thing we put into our child’s body has some kind of unexpected effect. And we are done experimenting with that process.

We’re looking for reliable solutions for our child.

Decision 2
We have started an official journey with a integrative medical practitioner, to join with all the allopathic medical practitioner relationships we have now. This is the reliability part of the exercise. I’m not keen on experimenting with my son, or with our life. We want to know what’s going on, we want to know why, and we want to know what we can do about it. We want measures and data and evidence.We want reasons, not promises. We want strategies, not risks. Where ever those things are technologically possible.

We have been watching Breaking Bad like it’s a documentary in the hope of paying for all of this. Because the painful irony is that this will bankrupt us. Plain and simple. Unless we win the lottery or a leprechaun leads us to the end of his rainbow.

There has to be a why.

Nothing like what we are seeing right now, with regard to the acceleration autism diagnosis, and in particular what is obviously medically concerning in autistic people, happens in a vacuum. We take responsibility for the increase in diabetes. We see our part in the rise in heart disease. Yet we are encouraged to write off autism as a diagnostic or statistical anomaly.

The egg in the bottle. The liquid into the chalk. And just so you know I don’t base all my thought processes on products flogged on ancient Australian TV… the man in a box trick.

There is always a why.

We just have to know how to look for it. And right now, the beginnings of accessible knowledge in genetic screening seems as good a place as any for us to start looking anew. ‘We don’t know’, is not a good enough answer. There is no way we will stop looking, while we have eyes and the odd un-engaged brain cell.

Which probably means we should lay off the chocolate and fluoride products.

Thanks Professor Sumner Miller, the dude with just a moustache and the dude with just a beard, and Mrs Marsh. See what you’ve done?

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.

What if?

In Diet, Medical, Perceptions on August 22, 2013 at 3:18 am

The platitudes and polarities in autism world make living here a notch more challenging than it needs to be.

I have enough perspective to accept that other people can and will do whatever they please with their version of autism. I’m certain it won’t be what I would do, but I’m also certain that they, as I, have a bunch to learn from the experiences and choices of others.

Hence the torture I put myself through on a daily basis – reading about autism on the internet.

I hit a wall this morning when the comedian called ‘God‘ on Facebook posted a syrupy sweet (disappointingly unfunny) hooray for autism post. You may have to ‘like’ God to view. Generally, I find him pretty funny. Today, I did not.

Today, I felt stabby.

My son is a lovely boy, no doubt. He’s gorgeous and loving and great at some stuff. Do I believe autism made him any of these things? No. No I do not. No more than epilepsy does, at least.

Do I think autism is a repository for ‘awesome talents’? No. Nor is auto-immune disease.

Do I think we are doing anyone any favours by perpetuating this ‘love your captor’ nonsense? Well, only if we are confident that the world will somehow find billions of dollars to support millions of people like my son, from birth through adulthood.

This week, autism has delivered my son and his peers the following (feel free to sing along, Twelve Days of Christmas style):
– a literal shit storm,
– a paper war designed to save a 10 year old from suicide,
– a psych lockdown for a 7 year old,
– a Webster pack of medication for a 15 year old that would put a cancer patient to shame and
– a grown up wheelchair for a 9 year old who no longer fits his therapeutic stroller.

The combination of these events, and God’s blue flaming made me think… there must be some better ways to think about autism.

Here’s a few random what ifs (I’m sure we could all add a pile if we had an Edward de Bono style strategic planning love-in).

 – What if the socially-awkward-genius autism and the can’t-control-your-adult-bowel autism are completely different things?
How would making that definition change the way we approach the diagnosis and treatment of one or the other? How would it serve the medical integrity of the condition? How much could we learn about the whole spectrum if one end wasn’t constantly white-anting the other?

 – What if we could get over the knee jerking and finger pointing around vaccination and actually had a good scientific (not epidemiological)  look at whether it is involved in autism.
No, it hasn’t happened/been proven/been disproven. No, they are not tested in combination. And No, a comparison of vaccinated Vs unvaccinated autism rates has never been done. What if we did those things? What might we learn? What might change if we knew more about the subtleties of the choices we are expected to make?

 – What if we asked GPs and paediatricians to consider actively educating themselves on the basis and treatment of the medical challenges autism brings?
Would it change the advice they gave parents? Would it change the nature of Early ‘Intervention’? Would it change the health outcomes of people with autism, who are among the most highly medicated and chronically ill in our communities?

– What if we all held hands and sang ‘Kumbaya‘?
Or another lovely but non denominational song, just in case someone is offended by that choice.

It couldn’t hurt, right.

Well, maybe listening to a worldwide chorus of Peter, Paul and Mary could be a little painful.

Let me think some more on that last one.