Valerie Foley

Posts Tagged ‘Research’

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Or it could be some mysterious unpublished very recent graduate of an Australian university.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.

Why?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So, why?

What did I do, in my life?

What did we do?

What did people around us do to contribute?

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

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

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

It starts with us.

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

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

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

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

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

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

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

Do we even want to fix this?

I do.

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

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

Just listen.

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

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

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

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

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

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

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

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

Now, let’s do why.

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

____________

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

Brain connectivity and autism

In Medical, Research on April 23, 2013 at 9:18 am

Brain connectivity and autism

Click the link above to descend into the world of competing theories about brain connectivity and its relationship to autism.

It pains me to say that a page like this does for me what a couple of hours reading Perez Hilton used to do.

I am entirely unsure whether that’s a positive change or not.

Dear people who study autism…

In Research on March 29, 2013 at 6:47 am

It seems like you are floundering a little.

I’ve been looking at the range of studies about autism that get published each year, and the thing I notice the most is how few of them focus on… well, anything useful.

By useful, I mean meaningful, practical or even actionable. By useful, I mean things that could change the game, rather than reinforce the current state where head scratching and head shaking are about the most positive signs of forward movement we have. To be honest, a lot of the studies I do see (and I see a lot) are beyond illogical.

We’ve known autism has been around for quite a while now. We’ve been doing this long enough to have a fair idea of the range of useful interventions and therapies. We’ve known about (and somehow ignored) the need for specific and meaningful services for adults with autism for a long time.

Quite frankly, you’ve been studying these things for a long time and you haven’t had much meaningful impact. I can say this because nothing in my life as a parent of a child with autism and a range of supporting medical conditions has changed/shifted/exploded in response to a study. Not intervention choices, not school based services, not medical advice, not diagnostic practices. Nothing, in almost 10 years.

Also, you guys seem to argue a lot about the diagnosis rate. It seems obvious to me. You get a diagnosis, your doctor/government/school/parent knows about it. Ergo, you get counted. I’m not sure what the mystery surrounding numbers is, but it seems to consume a lot of your energy. Is it wrong for me to suspect that if you decided on one reliable method of counting and just did it, you could? I’m thinking maybe the argy-bargy is a smoke screen, and I’m appreciating it less and less every day.

We’ve seen a bunch of suggestions about causes, and a bunch of reasons why none of those suggestions can account for everything. This back and forth process might make you feel better, but it does nothing for us out here. Genetics, environment, vaccines, diet, deficiencies, lifestyle choices… all seem like plausible influences on the autism rate. It seems like we’ve seen a lot of talk, but absolutely no action.

Over the last decade, nothing much has been done about prevention, either. No advice, no concrete suggestions beyond a couple of vague ‘perhaps you should take folic acid’ type of things (handy that folic acid is a recommendation in most countries and has been for a while…). It amazes me, being one of the parents swept up in this that you’ve still got nothing. I can’t imagine why not.

The latest figures show 1 in 50 in the USA, 1 in 62 in Australia, 1 in 100 in the UK. Big, fast increases over the last decade. Something’s going on. What is it?

As a parent, I have a bunch of ideas, but you guys are the ones with your fingers on the decision making buttons. So, let me hit you with a few suggestions.

– buckle down and look at environmental issues and autism diagnosis rates. Do it in a few places. Look at a few different issues (chemical use, pesticides, GMOs, food quality, pollution). Compare those results. Recommend some change.

– start a longitudinal study of pre-pregnant women in a few locations. Follow them for ten years. See what happens in their offspring. Make some recommendations about what we should be doing offspring-making wise.

– suck it up and do an accurate vaccinated vs unvaccinated autism numbers study. Do it carefully, break it down, make some changes.

– while I’m inviting trolls, study what happens when unvaccinated people have their own children. Tell us what you think that might mean for the general population.

– compare immune function in autistic people and non-autistic people. Then protect the people who need protecting with good solid advice about medicines and lifestyle.

– get a bunch of families to clean up their lifestyle, and leave a bunch of families doing what they want. Compare autism rates in both sets of families over time. By a bunch, I mean 100 000s of thousands across a number of countries. Tell us what we could change in our own lives.

– see what happens if you optimise gut function in a large scale sample of children over a long period of time. Give us some recommendations, instead of leaving us to work it out for ourselves.

– take every single person who reports an adverse reaction to a vaccination, and study their immune system. Find the similarities. Work out how to identify a vulnerable immune system and give them an alternate vaccination schedule. See what happens then.

– do a worldwide study of children with autism and… GI issues, seizures, mito, metabolic disorders. There’s a lot of them, all willing. Just ask.

– study the Vitamin D levels of people with autism, their parents and their siblings. Study what happens when they change their levels.

– do a world wide survey of autism parents. Ask anything you want. We’re a talkative bunch. We have lots of medical files.

These are just a few suggestions, and I’m sure that every autism parent I know has a bunch of much more impressive ideas. We have these suggestions, mostly because we need answers. We are not content accepting that our individual kids are acceptable collateral damage for what? A random role of the mental dice? A statistical anomaly? A surge in skill among doctors?

It’s not OK. If it was your kid, it wouldn’t be OK. It is your world, and it can’t be OK.

I’m sending you this set of suggestions because I want to you know we are not fooled by your tactics. We can see what you are doing. We are angry, and with very good reason. We are focused and smart and we know how to read a study.

We’d like to be able to read one that actually meant something significant to us.

Help our children. Prevent more children from being diagnosed. Treat those who have been diagnosed with medical respect.

If it was possible to write that gesture where I point to my eyes and then to you, and then back to my eyes, then back to you… I would.

You can pump out all the smoke and mirrors you like, but we’re not going away.

Cheers,

Valerie

Fox meet henhouse

In Perceptions, Research on March 29, 2013 at 3:46 am

Fox meet henhouse

Because the CDC would genuinely say if they thought what they were recommending was wrong…

How does one prove the reasons why someone didn’t develop autism?

Through statistical models.

Don’t worry about those actual people. They don’t matter.

Sometimes things are so stupid they’re barely worth linking to…

In Action, Environment, Medical, Parent issues, Perceptions, Research, Supplements on March 22, 2013 at 10:12 am

On the same day the CDC grudgingly admitted autism numbers in the USA have hit 1 in 50 (1 in 31 boys), another couple of curiosities emerged.

A study, from Harvard University (no less) linking childhood abuse and autism and a woman’s chance of giving birth to a child who would eventually be diagnosed with autism. There were cursory attempts to link the physiological effects of childhood abuse (stress on the immune system, brain chemicals rhubarb, rhubarb) to the creation of a child vulnerable to autism.

Also, a Swedish study linking young grandfathers and autism. I lost the train that logically connected the young grandfathers and autism, while I medicated my son’s seizures and attempted to soothe him from the whole body attack that is a dog barking in the distance. Though I suspect I lost it, because it’s so effing ridiculous that giving it thought would be insulting to my synapses.

It’s hilarious how we are often accused of spurious concept connections as autism parents (oh, the autism/MMR thing is a complete coincidence of timing… oh, he would have learned to control his anger with maturity and not all those whacky diets and supplements etc etc etc) yet ‘science’ can draw the longest bows known to man, and we’re supposed to go, ‘Oh, of course, that makes total sense because someone with Dr in front of their name said it.’

Nothing to see here. Move on. Smile at the doctor or he’ll say you have Somatic Symptom Disorder.

The timing is suspicious. But there’s a bigger suspicion/question/brain conniption.

There is no compulsion currently on anyone to publish research. It’s a big bone of contention in research internationally. So why publish these studies? And why publicise them on the same day as the CDC admissions (oddly impossible to find on the CDC website)?

Can you say, ‘Oh look, an unusual looking butterfly!’?

Many folk way smarter and better connected than me have spoken about the importance of the international community waking up and smelling the autism flavoured coffee.

My rant for today is about why in heavens name we are persisting in ‘studying’ things we cannot control?

I have absolutely no control over the fact that both my grandfathers were well advanced in age by the time I was born. I also have no control over whether I suffered abuse as a child (OK, I know that’s marginally contentious and if you want to see how insanely dinosaur like some members of the Australian media are about issues like this, click here.)

I have control over… um, wow… just about everything else. What I eat, what I wear, what chemicals I use and consume, where I live, how I sleep, what I put in/on/around my body, and let’s not even start on the choices I make about my child. We have control over those things. We all do.

Why are we not studying them?

Where’s the funding for the ‘how about a year without E numbers?’ study?

Who’s the Bill Gates of NOT filling our bodies full of foreign substances?

We are being fed the information that it is important to feed us.

And we are living with the consequences of not questioning it.

Even my cranky old grandfather would have been able to see that.

Before he died.

Old.

Growing out of autism

In Research on January 17, 2013 at 9:22 am

Growing out of autism

The rug doesn’t match the curtains.

The study and the headline are so very very different.

FWIW, of the 100 or so families in The Autism Experience, the overwhelming majority of kids who have grown up to be successfully mainstreamed (and I mean without 1:1 support) and anything close to being ‘un’-diagnosed are the biomed kids.

It took me a long time to accept it, but it’s without a shadow of a doubt true.

Our journey has taken a very different route, but it is what it is. The wellness narrative is far more potent for us than the recovery one, now.

Here’s the actual study.

In the interests of comparison…

In Research on January 13, 2013 at 1:06 am

We have issues with vaccines in this house, because our child has issues with them. Legit, logged, accepted by the doctors issues.

And he’s autistic, and epileptic, and he has gut and auto-immune issues, and the doctors agree vaccines played a role… so we are the collateral damage. Part of the ‘minuscule’ percentage for whom this particular public health initiative led to ill health. Vaccines were not safe, for Billy.

In the interests of comparison, I thought it was worth looking at the evidence that the CDC in the USA (the body designated to ensure vaccines and other public health initiatives are safe) publish as proof there is no link between autism and vaccines – at the bottom of the page, here.

And a pair of lists compiled by TACA (Talk About Curing AUTISM) and Ginger Taylor, an autism advocate – here.

No interpretation. I’ll leave that up to you.

What should we be researching?

In Action on January 10, 2013 at 11:28 am

What should we be researching?

Autism Speaks (yeah, yeah, I hated that video too, though mostly because it was a giant misguided rip off of the ‘What would you say to cancer’ campaign… and they exist and they seem to be turning a kind of a corner, maybe) announced their latest round of grants recently (click the link above), and it got me thinking about autism research.

What do I think we should we be researching? What have we done to death? Where is the evidence of anything? Who do I believe and who do I doubt? What research do I think would really help right now… really make an impact in reducing the rates of autism globally?

The biggest thing I can come up with is this.

If we accept that there’s some link between genetics and the environment in this game… if we think that medically vulnerable babies are hit with insults from the outside, in utero and after birth… then why aren’t we knocking ourselves out to discover who those vulnerable babies are?

Why aren’t we profiling immune systems? We could start by testing every immune system of every kid with an autism dx, in the same way as we do lame genetic testing (that sits in files and does nothing) right now.

We could make an autism test bank. Internationally. Then we could use it find out as much as we know how to find out. Compare these kids, as much as we can, see what we find. Put it on file until some genius works out how to test the right way.

We could apply some creative thought to the question – why do some kids develop autism and others do not? Not looking at ’causes’, looking at people. What do people with autism have in common, biologically?

Or, we could keep on making apps to remind us what ‘confused’ looks like, and whether your pants get pulled up before or after you wash your hands.

Cos, we clearly need more of those.