Valerie Foley

Archive for the ‘Diet’ Category

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.


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?)


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.



(Image: Clifford Harper/



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.

Wellness, Recovery and the odd black cat…

In Action, Diet, Environment, Medical, Parent issues, Perceptions, Research, Supplements, Therapy on June 1, 2013 at 2:58 am

Today, I watched this video again, because it popped up on my timeline and I hit play, like the trained monkey I am.

I rejected the school of thought in this video when Billy was a toddler.

I rejected it because I was encouraged to believe autism was not an illness, but a condition that I should just accept. So, I did not treat it. I managed it instead.

It is one of my biggest regrets.

When ‘actual’ illness became apparent in Billy (transverse myelitis, GI inflammation and now epilepsy), we jumped straight into treatment. As any human beings would. Illness needs treatment, right?

Put yourselves in our shoes – if you were told to just manage your four year old who was paralyzed from the waist down, mysteriously after a short bout of vomiting, would you go… Oh, OK? If you were told that your seven year old should just manage chronic constipation with no reasonable cause, would you go… Yeah, no worries? If your child was regularly woken from sleep with violent whole body seizures, would you just put a blanket on him and go back to sleep?

No, of course you wouldn’t. Of course we wouldn’t. And thankfully, his doctors wouldn’t either.

While I have massive issues with many of the medical experiences we have had, I want to be really clear about something.

The medical doctors will treat (to the best of their knowledge and ability) Billy’s medical conditions – auto-immune disease, constipation, reflux, epilepsy. A rare one will see, and maybe speak about, the fact that these conditions are occurring in the body of a person diagnosed with autism. They generally speak in terms of ‘coincidence’, a lack of luck or a series of unfortunate lightening strikes, but at least they notice.

We are now seeing (more and more) the emergence of an arm of the medical community that will speak louder and with medical authority about this. I for one am very grateful.

Because it might surprise you to know that, as Billy’s mother, I do not see any of this as co-incidence, I don’t believe in luck and I try as hard as I can to keep him safe from lightening strikes – real or metaphorical.

(As a side note, I’m genuinely shocked that doctors feel OK about using such non-scientific language, when their own first defense against autism parents’ concerns that vaccines/toxins/immunological events might play a role in their child’s wellness is… science. But I digress.)

Last month, at the MINDD International Forum, I was able to interview a few of the doctors who have changed the way I think about my son’s life. Actually, they are the doctors who affirm the parents who changed the way I think about my son’s life. But as this is getting a little bit too ‘lady who swallowed a fly’, I’ll clarify.

I spoke with Dr Martha Herbert, who appears in the video I linked above. I spoke with Dr Elizabeth Mumper, Dr Ron Erlich and Dr Robyn Cosford among many others. I spoke with Julie Matthews, the nutritionist who has forged a rational and evidence based path for so many autism parents. I spoke with incredible parents like Kris Barrett who have revolutionised their own professional practice in response to their own life journey.

The message from all these people was the same:
Making improvements in diet and lifestyle = improved  health
Treating underlying chronic disease = improved health
Improved health = improved functioning

Unsurprisingly, I came away thinking I am intensely fortunate for doing the work I do. More importantly, I really really really really wish I had been less cynical when this ground was being broken when Billy was tiny.

Because here’s the thing.

We are a canary family, in a whole generation of canaries. We are brighter and yellower than many, though by no means the most canary like.

Billy couldn’t be more medically autistic if he tried.

I was convinced when he was little that he was completely atypically autistic (and therefore inelligible for the raging hope that biomed offered) because he was not a behavioural kid. He didn’t tantrum. He didn’t spin. He didn’t rage.  I would look at these stories of kids yelling and biting and kicking at the world, and think, ‘my beautiful toddler is just autistic, he’s not sick. This stuff can’t help Billy.’

In the most perverse statement I will ever make, I will say Billy is fortunate to have become so very obviously unwell.

And before you diagnose me with Munchhausens by proxy, or call child protection, let me explain.

By separating Billy’s medical life from his autistic life, as we had done, we put ourselves in a unique position to see what happens when you treat the underlying medical conditions that manifest in an autism diagnosis.

When we treated his auto-immune illness with massive IV prednisone, his language improved overnight. Overnight.

When we treated his constipation and reflux (with diet, probiotics, enzymes and omega oils) his social skills improved. Noticably.

When we treated his seizures with anti-convulsants, his cognition took a huge leap.

When we changed our lives, we changed his ‘luck’.

I don’t give a crap if you call it recovery, or wellness or life… Billy’s existence is better. He is better.

None of these solutions are perfect, the journey will go on for his whole life, I imagine. But we’re on it. We’re driving it, and it’s making things better.

I spend my days talking to autism parents on various places on this journey. Some hardcore recovery journeyfolk, some dabbling in ‘the diet’, some adamantly opposed to the idea that autism is anything more than a roll of the genetic and behavioural dice.

Each to their own, I say. Despite drastic differences of belief and practice, I don’t know any autism parent who doesn’t think they are doing the best they can for their child.

In fact, I find it beyond ridiculous that parents would choose to use a difference of perception to reinforce the validity of their own path. Take yours and run with it, I reckon. All I ask is that instead of using the differences between your experiences and mine as a reason to reject my reality, I’d encourage you to learn from my experience.

I didn’t think my child was sick. I thought he was unlucky, and somehow we just had to live with that. We had to force him out into the world, with a few swings on an OT’s rope and some flash cards as weapons against a world that made him choose muteness over communication.

The pressure of doing that (or maybe time, inevitability, the manifestation of staring too many black cats in the eyes… whatever) made him really sick. When we treated the sickness effectively, the unlucky stuff improved too.

Billy still qualifies for an autism diagnosis, and I’m not thinking that will ever change. Billy will likely have lifelong support needs. But, Billy is much, much, much better and I have every hope that will continue.

He is no longer unlucky. He is on a path to wellness that can not help but improve his life.

I have no doubt that the path we are on now has genuinely recovered children from the medical conditions that can manifest in an autism diagnosis. I have no doubt that this path doesn’t ‘cure’ others. Just the same as some cancer treatments work for some people and not for others.

This isn’t a framework of magic bullets and miracle cures. It’s about health.

I rejected it because it seemed like the former, but it is actually about the latter.

Billy’s health is doing what health should – it is healing.

For those who take perverse pleasure in bringing down those who are courageous enough to take control of their child’s health, I say, who are you helping?

For those who say it’s dangerous quackery and parents should be warned against it, I say, do you think we are that stupid?

For those who think autism is just fine, I say, enjoy the ride and good luck to your grandchildren.

Eighty years ago, if your child developed acute leukaemia, you were told to try a blood transfusion and prepare your goodbyes. These days advances in medicine and more importantly in our understanding of what leukaemia is, mean the treatment and prognosis is entirely different.

We study, we learn, we change… in relation to all sorts of medical/social conditions, and until we genuinely accept autism as a medical condition, we cannot reasonably expect change.

In the meantime, I have grains to grind and nut milk to make.

And black cats to stare down. Just in case.

It’s April 2

In Action, Diet, Environment, Medical, Parent issues, Perceptions, Research, Supplements, Therapy on April 2, 2013 at 2:15 am

It's April 2

Red for Action.
I’m aware already.

What a child should eat…

In Action, Diet, Parent issues on February 19, 2013 at 10:26 pm

Just a quick follow up to yesterday’s eating post.

The ‘healthy eating’ guidelines issued by the Australian Government included daily eating plans for various sections of the community. The one for children Billy’s age is here.

Just because it riles me so much (knowing what ‘healthy’ eating can do to a vulnerable child’s body) I broke down the suggestions by ingredient.

The things that bother me are high levels of processed food and processed ingredients within that processed food, poor quality ingredients, preservatives, colours, high salt and sugar content, added vitamins and minerals (the bioavailability question), the reliance on gluten and dairy, the lack of fresh fruit and vegetables, the encouragement for low fat and processed ‘dairy’ products… I am sure I could go on.

On so many levels, WTF?

Even on the most basic PR level, these guidelines came out with news stories featuring faceless children shoving burgers into their mouths. How are they planning to combat obesity by encouraging children to look for nutrition in a packet or a box or a colourful tube?

Anyway… here’s the list. If the source makes you go ‘wha?’ it’s because manufacturers have websites full of spin and short on detail.

The plan again, for reference.

Weetbix: Wholegrain wheat (97%), raw sugar, salt, barley malt extract, minerals (zinc gluconate, iron), vitamins (niacin, thiamin, riboflvin, folate) (

Reduced fat milk: milk, vitamins, minerals, vegetable oil, fish oil, permeate. (

Crumpet: Wheat Flour, Water, Raising Agents (500, 450), Iodised Salt, Dextrose, Preservatives (282, 234), Vitamins (Thiamin, Folate). (

Margarine: natural plant and seed oils, vitamins A & D, colour and flavours (eg. diacetyl), additives (emulsifiers and preservatives 475, 476), milk, salt, water (

Ryvita: Wholegrain Wheat Flour (97%), Wheat Flour, Sugar, Skimmed Milk Powder, Rapeseed Oil, Salt, Sugar Beet Fibre. (

Tinned fruit salad: fruit, sucrose, invert sugar syrup, dextrose, dried glucose syrup, glucose syrup, fructose and fructose syrup. (

Kids yoghurt: low fat milk, milk solids, sugar, water, fruit (min. 5.5%), cream, rice starch, halal gelatine, natural flavours, preservative (potassium sorbate), colour (carotene), live yoghurt cultures (s. thermophilus, l.bulgaricus & b.lactis) (

Wholemeal bread: Wholegrain Wholemeal Wheat Flour (50%), Water, Wheat Flour, Baker’s Yeast, Vinegar, Wheat Gluten, Iodised Salt, Canola Oil, Emulsifiers (481, 472e, 471), Soy Flour, Vitamins (Thiamin, Folate). (

Reduced fat cheese: Pasteurised Milk, Salt, Cultures, Enzyme (Rennet) (

Peanut butter: Peanuts (85%), sugar, soybean oil (antioxidant 330), maltodextrin (from corn), emulsifier (471), salt, molasses (

Again, I say… WTF?

Call me a zealot, call me whatever you want. Just don’t call me or my family for any of these meals.


Food, eating and insanity

In Diet, Medical, Supplements on February 19, 2013 at 4:47 am

Today, the day after the Australian government released an arcane update to their slightly less arcane dietary guidelines, Billy has eaten quite a few more than twenty individual ingredients.

And the day’s not over yet.

I preface this by saying in his past, Billy has managed to eat only one ingredient in a day, and sometimes that ingredient was potato, maybe deep fried in oil (technically two ingredients, maybe more if you count the added carginigens). I’m not proud, but I am honest.

Insert ridiculous and constant illness, all sorts of associated social and health challenges and an ever growing list of diagnoses, and a rock could have worked out things had to change.

People said, ‘Yeah, autistic kids are picky eaters.’ We all compared our kids hilarious preferences for food of a particular colour or texture. PhDs were done on the autistic love of the chicken nugget.

I knew it was going to be a challenge and I knew (from failing spectacularly a number of times) that while there was an urgent need for change, speed was not going to be my friend on this journey (and I mean the hasty kind, not the illegal kind).

It’s been anywhere between one and two years (depending on which whack in the face with a wet fish I take as the actual beginning of this journey) of GI investigation, diet change, supplementation, lifestyle revision and research obsession and… we have reached a landmark, of sorts.

Today, for breakfast Billy had a smoothie made out of home made almond milk (almonds, pure water, medjool dates, vanilla), bananas, raspberries, spinach and ice. He ate some extra fruit as well. That’s 7 separate ingredients (if I was counting…)

Then we made muffins with the almond pulp (which I won’t count again) with carrot, sultanas, coconut, eggs, coconut oil and coconut flour. That’s 6 more. We’re up to 13 (though words are my thing and I’m very excited, so forgive me if the numbers are wrong). He ate a muffin.

Then, he requested leftover GF pizza. Mushrooms, olives, hard cheese (taken with enzymes), tomato, Superfoods for Kidz Vital Veggie Power on Quirky Cooking’s GF base. I’m stopping counting ingredients because these last two have bazillions of goodies in them. I’m confidently going to say he’s had maybe 30 different foods today.

It’s only the afternoon, so there’s probably a snack and dinner to go.

Now, when you ask him, ‘Would you like to try….(any food that’s not nuggets)?’ He says, ‘Sure.’ And he actually does try them. Last week, he asked for a fruit salad (I know…, seriously?) and he ate it. It had rockmelon, paw paw, blackberries, blueberries, banana, apple and grapes in it.

I know. It’s me talking. It’s my child I am writing about.

This is how bad it used to be.

We travel a lot. It was impossible for us, up until this year, to travel anywhere out of striking distance of a McDonalds. I’m not exaggerating. If we couldn’t cook for ourselves, McDonald’s chips were it. Seriously. Again, I’m not proud.

And here’s how excellent it has become. Yesterday, he asked if we had any chocolate. I looked. All the packaged stuff in the pantry was out of date (woo hoo!!), and he went, ‘OK, can I have an apple?’

If we can do this, anyone can do this.

What’s the issue with dairy?

In Diet on January 20, 2013 at 9:34 am

Exactly what is the problem with dairy and autism?

Is it the casein?

Is it the BCM7 protein fragment?

Is it the permeate? Or the lactose?

Is it all of them or none of them?

We know that dairy completely slows Billy’s gut function. He was completely CF for five years, and in the last year we have been able to re-introduce hard cheese as long as he has dietary enzymes first. He still can’t tolerate milk, ice cream, yoghurt or anything that includes them as ingredients.

Every day I read something new – a new theory, a new recommendation, a new piece of advice. They are always full of certainty.

Which is truly awesome.


Eating the elephant

In Diet, Medical, Supplements on January 19, 2013 at 11:28 am

Eating the elephant

Another good page – info and links.

Biomed is like eating an elephant.

Except the elephant is made of pills, oils and powders.

We tried it when Billy was two and got spooked by spooky doctors (who have subsequently lost their licenses), and saw little progress and hemorrhaged cash for too long. Then a homeopath provoked Billy’s immune system so hard it collapsed.

So we gave it up, thinking it was all a bunch of dangerous hooey.

But it’s not. I promise it’s not. Not all of it.

No more than eating, drinking and sleeping well is a bunch of hooey. It seems like the fun police but it’s not. It’s a roadway to better functioning. Sometimes things work, sometimes they don’t. But that’s like anything in wellness. We’re all different.

Do it carefully, do it safely, do it with your eyes and heart (and wallet) open. Don’t do anything that feels wrong, but if something does feel wrong, do yourself the favour of working out why.

Most importantly, my personal advice would be do not do this alone.

It’s an elephant, and it’s big and once you take one bite, it changes shapes and then it’s hard to know where else to bite.

Find a medical/wellness professional who knows autism and talk to them, without your child first. If you don’t like them, move on and find one you do trust. The internet is not a medical professional. It’s a great support, but it is not reliable enough to guide you completely. It’s just not.

Here’s search engine to find a practitioner in Australia and NZ. I’m sure these people would point you in the right direction if you are in other countries.

The reason I think this is important is because autism is not a medical diagnosis. It is a behavioural one. If the behaviour you experience/see/deal with is troubling or self injurious or dangerous, then it seems nuts to me if you don’t try to do something to ameliorate it.

Also, there’s a lot of stuff that’s become normalised in autism that should not be, in my view – GI issues, food intolerances, sleep disturbance. In an NT person, you’d be asking for help. In an ASD person, doctors go ‘Oh yeah, lots of autistic people have that.’ – end of story. Actually, not end of story, ‘Take this drug.’ Now, end of story. I’m not buying that for a second. It’s like saying, ‘Lots of people who sit down a lot are overweight. If you have to sit down, take this metabolism booster.’

It just seems logical to ask why. Why does my child struggle to poop? Why does my child bite himself or others? Why has my child developed OCD? Seriously, why is why so unexpected?

Behaviour does not exist in a vacuum – it is learned or it comes from a biological basis. That biological basis can often be an imbalance or a malfunction and it may be able to be addressed biomedically. If it’s learned then there’s behavioural therapy (not that I’m a massive fan, but that’s a whole other post).

Despite the whole, ‘if you’ve met one person with autism’ thing, there are too many similarities across the autism spectrum to not learn from the journeys of others. You don’t have to copy them, just learn from them. I quite like this site, but there are a billion others, catering to your belief set.

Knowledge is accumulating.

I, for one, can’t imagine a reason to ignore that knowledge (whether I agree with it or not).

Obviously, if you are happy as a clam with your child’s or your own health and behaviour and you don’t see the need for any change, then ignore this whole post.

You’ll know by now, that I think my son is a cracker of a human being, but I’d be an idiot if I denied the complexity of his challenges – across the board, with ‘autism’ (as it is defined in the DSM) being the smallest of our concerns.

I can’t imagine ever ever giving up the chance for him to have better health and functioning.

And that is why I eat the elephant.

Apologies to all the elephant lovers out there.