Thursday, August 30, 2012

In the name of autism...

In the wake of the publication of an article about autism (with astonishingly beautiful pictures of Billy included) in Australia this week, it has been a real pleasure to see a broad discussion about issues related to the condition bloom. It has also been amazing to hear people's stories about themselves and their own children.

What has been slightly unsettling is to see how comfortable people are with falling into a polarised position, in relation to autism.

I have always felt uncomfortable with polarities, most especially because their yes/no nature denies the fact that new knowledge might exist beyond their limits.

It seems incredibly unproductive to present your position as the 'right' one, and the opposite position as the 'wrong' one, without acknowledging the subtleties of each of those positions (or any of the others that could be involved).

But maybe I'm missing something.

The autism related positions that shock me a little, with their simplicity, go like this.

I am an adult Aspie (or my child is an older Aspie) and I am fine. Therefore, people should stop worrying/pathologising and start accepting that difference is perfectly OK.

Autism is caused by... (insert opinion) and people who think otherwise are wrong and stupid.

Autism is not a disease (I know, because I am autistic or my child is) and people should stop saying it is because it is offensive to me as an autistic person.

And the one that really really concerns me is,

You should just enjoy your son.

I'm sorry. Did I hear that wrong?

I really appreciate people's positive energy, I really do. I am in awe of people's courage in making contact, and I am not trying to make anyone feel bad.

... but I'm wondering how it could possibly be that people who care about understanding where autism comes from and about reducing the incidence in future generations might not enjoy their autistic child. Or am I jumping to the same type of conclusions I am struggling to accept in other people...?

Let me tease this out for a second.

I get that people don't know us, unless of course you do (in which case, hi! how's it going?) but... is it a healthy step to take, people who don't know us, to jump from 'she wants autism numbers to decline' to 'she might not appreciate her own child enough'?

On similar thinking grounds, why do we need to leap from 'it is devastating to be told your child has a lifelong disability' to 'parents of autistic kids think autistic adults are not valuable'.

How in heaven's name could a parent who is in the early stages of understanding, never mind acceptance of a condition that -

a) we have no known cause for
b) we have no agreement on management of
c) we have increasing numbers of, and can't (won't) agree on why

- be thinking that adults who have the condition are somehow downgradable in anyone's estimation?

And again, why are we being encouraged, by people who say they have no medical challenges to deny the medical challenges that are apparent in so very many of our children.

Why is it all or nothing? Why is it 'my way or the highway'? Why is it not... we're all in this together?

Last time I looked, no-one questions the level of enjoyment a parent of a diabetic child gets out of their child. I'm not sure if adult diabetics get on diabetic forums and tell parents of newly diagnosed parents how to feel about their children.

I'm assuming this happens because the level of discourse about an established condition like diabetes is slightly more sophisticated. We know a little more about what causes it, we know some more about how to manage it.  I'm assuming, because I'm not in the diabetes community, but I can see it's easier to talk about than autism is... I wonder why that is?

I hear the chorus of 'autism is not a disease' as I type, and in response I say, 'how do you know?'

I hear people say, 'I'm not sick, I am just different' and in response I say, 'That's brilliant news but my child is often very sick, and so are many of his autistic peers, more and more each day.'

I hear people say, 'you disrespect me with your talk of disease' and in response I say, 'You disrespect my child by denying his reality.'

And that's the point where I feel like I'm back in school having arguments with nuns about whether God exists or not. The polarities are not only pointlessly impossible to prove, they are waaaaaay too far apart.

Why are we not all right? We are all here, acknowledging a connection to the same condition, right?

We all accept autism is a spectrum condition. It is very young, medically. It is changing in front of our eyes. People outside of the condition, or people who have had it for a long time may not be aware of the changes, but they are there.

Of the 100 or so families I would call peers on this journey, well over a third of the autistic kids have serious medical challenges. Not simple challenges. Serious, increasingly life threatening ones - metabolic conditions, mitochondrial disorders, serious mental illness, auto-immune conditions. Every week comes with a new, or worsening diagnosis among these kids. If this is just co-incidence or bad luck, we all need to move our houses off the indigenous burial grounds we must have defaced and buy a couple of black cats each.

None of us were told to expect this. None of us knew it was coming. All of us are, and should be (in my mind) alarmed.

It would take a very, very closed mind to experience what we have experienced in relation to the health of our child and not assume it was linked to the fact that he is also neurologically different. He is one person, one integrated body system, with a recurring set of blatantly medical red flags that bridge his 'difference' and his time in the ER.

Us accepting that has been hard, but that is nothing compared to what Billy has to deal with. Us accepting that does not, and should not lessen the legitimacy of any other life journey on the autism spectrum - similar or different to Billy's.

Does acknowledging (because calling an ambulance repeatedly for your child kind of makes you acknowledge stuff) the seriousness of our kids health conditions make us devalue them as people (autistic or not)? Of course it doesn't. And to be honest, it's pretty offensive to be told it does, or even that it might.

My personal take on our lives is this.

Billy is autistic. Billy has seizures. Billy has an auto-immune condition. Billy has chronic GI conditions. Billy has blue eyes, a photographic memory and gives the best hugs on planet Earth.

None of these things make him an better or any worse than any person on the planet. They, and many other things, make him Billy.

As his parents, it is our job to help him have the best life he can possibly have. This job is only different to other parents' journeys (ie. with children without the conditions he has) in the fact that we spend way more time in the hospital than some people, way less than others.

Beyond that, we love him and challenge him and care for his needs and, most importantly, help him find his path in life. The biggest part of that job is helping him have a very clear sense of who is is - inside and out. He knows he is autistic, he knows he has seizures, he knows he gives good hugs. The list could go on.

Does he think any of those things are bad? No. Not for a second. Are they always fun? No. No, they are not.

Acknowledging the challenges in anything, let alone something like autism, is a healthy process, surely? Giving an autistic child the opportunity to understand that his challenges are not because he is a loser, but because he has a legitimate condition that comes with a range of issues (more than just 'difference') is a responsible path.


I could honestly give two craps whether someone thinks their autism is a gift from God, or a curse from the vaccine industry or an unfortunate by product of a visit from aliens during pregnancy.

The reality is, it is here. None of it should be disrespected. None of it should be judged. None of it should be discounted as something as simple as 'difference'.

How an individual carries themselves through life, in addition to their inborn capacities, is influenced by how they were parented. We take that job very, very seriously.

If I thought I was bringing my son up to believe that there is one belief system, and all others were wrong, I would feel like I was failing dismally.

How we have got to the point where we think it's OK to apply this black and white thinking to a condition like autism, is a mystery to me. The only possible reason I can think of is because we do not know enough about it yet, so people are all clinging to their various lifeboats determined to believe theirs will make it to shore.

Polarities are not only basic level debate strategies, they deny the depth of information that exists (and will exist whether we like it or not) in that vast region that spans the line between black and white.

I'd quite like my son to be healthy. I'd quite like to avoid other children having to have his challenges or the challenges I see in his peers. The difference involved in those challenges is the least of anyone's concerns. The danger involved is the greatest.

So, if a polarity in relation to autism is necessary, here's one.

Difference on the one side. Danger on the other. The stakes are not just way higher, I suspect they are very different to what they used to be.

As much as I don't care for such simplistic arguments, and don't see the sense in trying to unravel a person (least of all my son), I want him to not be in danger. I could care less how different he is.

If doing that makes people think I have somehow compromised my ability to enjoy my child, then that makes me really quite sad. The reality couldn't be further from the truth. Sadly, this very line of thought takes us back to a very unproductive way of viewing and managing disability or difference, in my mind at least.

The discussions we need to be having are so much more complex. I only wish we truly knew how to have them without alienating each other with polarities.

If there was a 'right' position in this game, surely we would have leapt on it.

Then, the world would be happily accepting all the 'difference' and we (and so many others) wouldn't be headed to the hospital again and again and again.

All in the name of autism.

Tuesday, August 28, 2012

The point of a point of view...

It's been an interesting few days.

A Canadian documentary about autism went to air in Australia, and the wave of reaction was something to behold. First, autism parents and families went 'Wow, finally, someone talking about one of the key issues we live with', with a tiny bit of 'Oh great, another thing to feel guilty about' and a few 'Why are people thinking we don't know this already' statements.

Then, the service providers and the non-aligned researchers started in, warning people (who clearly have no ability to interpret the information for themselves) to treat the documentary's message with caution (and I am being kind about their statements).

On the most basic level, I felt a curious mixture of anger and embarrassment. Anger at the pathetic patch-protecting response of the autism industry, and embarrassment that Australia is so far behind international thought on the medical nature of autism.

But that's my point of view, from where I am at the moment in my ride through autism land. It's not where I was when we started, and it's not where I was this time last year. It's not where I will be in five years time.

I think my journey is fairly typical, especially for someone with a child with a range of challenges.

Moreover, what I think is just that... what I think. I don't think it's gospel. I don't think it's irrefutable. I do think it's an honest product of what we have been through as a family.

In response to the interesting-ness of the last couple of days, I feel moved again to think about why I put words on paper about autism. I'm just another mother of a child with the condition. I'm no expert, in anything. So, what the hell am I doing here?

Let's see... I do not write this blog to:
 - present some ideal of what autism parents should do with their time.
 - harange/bully/insult anyone who does things differently to the way I do.
 - promote one intervention/service/initiative over another.
 - inflate my own sense of importance.
 - make money of any kind.

I do this for one reason (apart from to sort my thoughts into neat rows of word-ducks).

In case, one person, one day, in a moment of need might come across what I've written and go... Oh wow, I relate to that. 

It sounds insane, because autism is everywhere, right? It's not like there's a shortage of information out there. But, here's the thing.

Each and every autism parent has to navigate their own way through what really is a minefield of information. One would think, given the depth of the minefield, that it might be like autism Christmas... lots of choice, lots of positivity, lots of surprises.

Well, it's not.

It's more like autism Mad Men. On crack.

Almost every thing you read about autism has an agenda behind it. The agendas vary and they sneak up on you, especially if you are a little tired and emotional.

When you start in this game, it's really, really hard to decode those agendas.
 (well, it was for me, and I'll happily admit I'm not all that quick witted. If you've got this game wired already, just sing a happy song for a few minutes then cut to the bottom of the page. I'll try to throw in a joke for you, by way of a reward).

Here are a few I have found.

Someone is selling you something. 
This can be good and bad.

Some things, you genuinely need to buy, so it's good to have the information (therapist services, books, some food and supplement related products).
Some things you think you'd like to try, but it seems too good to be true or it's gut wrenchingly expensive and so it makes you nervous (computer based products, apps, other supplements and interventions).
Some things are so outrageous your alarms rise straight away but you can't help looking anyway (programs that teach you to 'love your child', snake oil of various kinds).

There is a giant, and growing, pile of cash swirling around autism and it is a giant, and growing shock that people will take advantage of you in pursuit of that cash. It's business, to them, and I'm sure there are very few genuinely evil people out there, but, seriously... buyer beware.

If re-mortgaging your house is required so you can engage in a long term behavioural intervention, and you don't mind re-mortgaging your house... go for it. But, know that NOTHING (repeat NOTHING) comes with a guarantee of success, so you may end up with a giant debt and not what the brochure tells you will happen. If you are happy to take that gamble, then take that gamble.

GFCF is expensive, in time and money. So is going organic. So are supplements. So are shoes, and restaurants and overseas holidays. Do not listen to the sales pitch. Well, do listen, then go and do more research. Then ask some people... Then, read some more, ask your doctor. They'll all say different things and you will feel like vomiting, but you will learn useful stuff. Even so, the outcome is unpredictable.

Therapists, psychologists, consultants will all charge you significant prices for their services. Are these prices justified. Sure, they are, if the therapist is skilled and experienced (which is really hard to work out because, lets face it, they all say they are, and they are all more skilled than we are - unless we are therapists ourselves, so... ). It becomes less and less easy to find the money, and more and more necessary to find it. Not the best position to be in, when one is under pressure to allocate the dwindling cashola.

It's tough, but you have to make the call that feels right to you, and it's bloody hard to know what feels right. More often than not, you listen to the spin, try the thing, drop way more money than you have and then kick yourself and move on. Once in a while, you hit paydirt. Those are good times.

Someone believes something, passionately.
This one takes a super human level of reading between the lines skills, and regularly explodes unsuspecting brains.

Autism is political. Autism is emotional. Autism is divisive. You have to get really good at working out where someone is coming from and reading their passion through that, very legitimate, lens. You need to know about the lens because you will grow one too (or a few if you are lucky) and it will influence who and what you believe (or not) and how quickly you will believe it (or not).

What the hell am I talking about?

Neurodiversity is the easiest to decode, to me. Neurodiversity is term coined by advocates who are autistic to advocate for their right to be autistic. It is a deep, worthy, complex set of beliefs that I will do no justice in one sentence. It has become an advocacy based political movement in the autism community and at various times, prominent members of the neurodiversity movement will make statements on various things relevant to the autism community.

Sometimes, as a parent of an autistic child, who is not autistic yourself, you will be deeply confronted and challenged by what neurodiversity advocates have to say. Other times, you will find yourself applauding their messages and finding great hope in them. Almost always, they will make you question your choices. Sometimes that challenge will disappear quickly, other times you will go out and sell a whole pile of stuff because you realise it's completely wrong for your child.

Similarly, advocates of vaccine safety, biomedical treatment, ABA, mainstreaming, recovery/cure... any number of things, will throw intellectual grenades into your journey through the information. It is really hard to not get scared, angry, threatened, inspired, teary, hopeful and a bunch of other Disney dwarves.

I suggest you become all of those characters, and while you do, try to work out why. Try to decode your reactions, and use that to get yourself a useful framework for action.

Am I angry because it's genuinely offensive, or am I angry because I am feeling guilty for not considering this before? Am I teary because I am exhausted, or am I teary because I've missed an opportunity? The answers will surprise you, I promise. I suggest a including a drink or a chocolate or a very understanding friend in this decoding process, as it's not fun by its very nature. You may as well lighten the load a little.

Then, stand up, put your grown up underpants on and get on with it.

Someone is feeling a strong emotion of some kind.
This is about inertia.

We all do this in our non-autism lives. Well, I do.

Gyms (yoga/pilates classes/bootcamps) are stupid, is my favourite one. I say it all the time, and I have said similar things throughout my life. What I'm saying is, 'I should be exercising in a way that works for me, and I'm not.' Therefore, all the choices I have rejected are stupid.

In reality, they are not stupid. They are perfectly legit choices for other people. I'm not keen right now (though I am getting to love the treadmill running, but that's for another post), but I know I have to do something, so I'll say (or feel, if it's a calm day) my non-preferred choices are stupid. I might even go to lengths to disprove the validity of pilates in conversations, with involved stories about pilates disasters and unfairly acquired pilates injuries. No offense, pilates, I'm just using you to make a point.

I do not know one autism parent who feels like they are doing enough for their child. Not one. This might reflect the calibre of people I know, but I suspect it's more than that. You can never do enough. You can never stay ahead of the game. There is always something else you should be doing, thinking about, planning for, freaking out about... so don't allow that already fraught journey be hoodwinked by other people's emotional reactions to whatever you are considering.

So, my advice would be accept the information, but first process other peoples' emotions in whatever way works for you. They should not be a mitigating factor in your decision making. Do not use your reaction of fear or overwhelmed-ness as a reason to not act. Do not use your reaction of giggly hopefulness as a reason to act.

Take a sanity second. Take a sanity month. Stay engaged, but take a sanity year.

And here's where I want to say something I wish someone had said to me. It is my point of view. It has become the reason I keep on writing.

Hope is a wonderful thing. Progress rocks the kazbah. But if I've experienced and observed one thing on this journey so far, it is this.

It is not getting easier as time goes on. It is getting different. And it's not always an easier different.

I definitely know some families who have managed to minimise the challenge significantly, but they are in the vast, vast, vast minority.

Do everything you can for your child, of course. That's what parents do. But...

Do something (anything, whatever you can do) to prepare yourself for the fact that it might not get easier. Do something so that that reality doesn't stab you in the heart/gut/brain every time you face it.

I'm not saying anything even remotely related to not having hope, or that autism is a pox on anyone's house, or that autistic people are hopeless burdens on all of us.

I am saying, the narrative you are likely to be presented early on in this journey is that you will be relieved of the stress as soon as is humanly possible. The people who are presenting you with the information you seek have likely given you this message. Maybe it will come at EI, at therapy, maybe at school, or when your child becomes an adult. As much as I want this to be true for me, and much much more for my son, it is not what is unfolding. It is not what I am observing around me.

And...  it is what it is. It isn't a choice, and it is our lives. It isn't miserable by any stretch of the imagination, but it's not what the agenda bearing statement makers promised. They were making statements based on their agendas, not on us.

This is NOT a competition about who is more right. It is a significant, important, commitment to happiness. It is life.

You are the only you. Your child is the your child.

I have learned (been taught/been forced to accept) that it is really, really important to look after your own emotional (and physical) journey. Your child needs you to have your ducks in a row. They will need you to have your ducks in a row for a long time, a much longer time than you expected. Even if you choose to replace those ducks with geese, or oranges or bottles of beer.

OK, maybe not the beer. Not every day.

Sunday, August 26, 2012

Enough with the drugs...

Today we head back to Dr Poo, for what must be a six monthly check in. I kind of like that I don't know when the last appointment was.

In the time since we last saw him, we have made pretty significant changes to Billy's gut life, and we have seen pretty significant gains too. It's by no means perfect, but it's better.

I feel like the highschooler with a note from my mother to say I'm allowed to smoke at school, as I head back to the GI, just kind of in reverse.

And here's why.

To Dr Poo and to so many others, we say, 'Thank you, but we don't want to take the drugs.'

I want to put a giant disclaimer here.

I am not, and would not ever ever ever make a comment on or pass judgement on anyone who chooses to medicate their children or themselves. Everyone does the best they can, and more than that, it's their life, their choice and their internal logic that I can never and would never presume to understand.

Having said that... we get a lot of pressure to medicate Billy, from various places and for various things.

The GI would rather Billy took the drugs to keep his bowel moving, and to reduce his acid production so the reflux isn't an issue.

The neurologist would rather he started on anti-convulsants to reduce the number of seizures.

The paediatrician suggests we consider medication for attention/focus/stillness if we want to maximise Billy's school and social success.

We listen, we research, we talk, we observe. In the case of the GI drugs, we gave the drugs a red hot go.

But, so far, the hardcore pharmaceuticals have not proven to be the road for us - in theory or in practice.

We have seen drug reactions that doctors have no response for, but 'wow, I've never seen that before'. We read listed side effects and quake with uncertainty. We do not feel comfortable with the uncertain future that comes with long term untested use of big deal drugs on little growing bodies. We have the space in our lives to made lifestyle changes to accommodate Billy's needs, and the good fortune that he is not showing signs of being a danger to himself or others.

This is not meant to start a debate about whether drugs are good or bad.

Drugs are good. Drugs are bad. And what's a drug anyway? The doctors delight in telling us that supplements are drugs. 'Natural' substances are drugs. Drugs come from plants. I'm sure they are right.

There is no doubt medication is the only answer for many people. Right now, it feels a lot like once we walk through the hardcore medication door, it is very very hard to turn around and walk out again. We want to be genuinely and seriously convinced it's genuinely and seriously necessary before we turn that handle.

Here's some of the thinking I am falling back on (and am certain will evolve and explode many times over on this journey). I've ranked them from easiest to hardest to swallow (in my experience, and in a symbolic tribute to the substances we are considering).

What the hell is in there?
I have learn to not give Billy foods containing (randomly chosen food additive) Butylated Hydroxyanisole (E320, perfectly legal to add to anyone's dinner).

I do this because it's a synthetically manufactured chemical, and I can source enough reading to know it's not doing any good (at the very least) to our bodies. We do not need BHA in our bodies. The food industry needs it because it's doing a great job of stopping fatty foods going rancid on the shelf.

I can at least understand what is in the supplements we choose. I have a teeny tiny bit of knowledge based power. I'm no scientist, so it's not a massive advantage, but it's something. I don't currently have that right when it comes to pharmaceuticals. So I'm more cautious about them.

What the hell is going on?
Billy has odd reactions to drugs. Doctors don't know why. Doctors actually, genuinely demonstrate a lack of care about why. We think and read and ask and research, and if it seems right, we choose to manage the condition over masking it with medicinal bandaids and risking the side effects.

On top of that is the ever growing feeling that 'they' (those who make and sell medicines) are not in this game for our health. I'm not saying safety isn't a priority, I'm saying a bit of collateral damage is not a reason to consider not using the drugs, to the medical fraternity.

Drug safety is based on statistics, not individuals. Billy is an individual. Until someone can give us a clear framework for the drug reactions, we will remain cautious.

Even if he didn't have odd drug reactions, we would be cautious.

What the hell are we expecting here?
Billy is Billy.

Right now, he is happy. Right now, he is on a semi upward trajectory in terms of the challenges he faces. Without wanting to sound like I'm selling front row tickets to my own show, I'd like to think some of that upward movement is because we have made significant changes to our lives to help him.

I'm not even considering the supplements or diet stuff here (though I'm sure they are contributing) but at the most basic levels, we live our lives to reduce his stress levels. We changed our lives so he can learn outside of a school/classroom setting which proved to be immensely stressful to him. We acknowledge his unique stressors and work with, not against them in a very practical sense. We allow him to lead in processes of scheduling and change in our lives. We keep a consistent (and yet growing) team of qualified professionals around both him and us (conflicted as that makes the grown ups in the room some days).

Let's choose a few 'problems' that the drugs are meant to address.

Can he sit still? No. Does it matter? No. Will drugs 'teach' him to sit still? Tough question. Will they make him sit still longer so he can comply with the requests of someone else? Maybe. Could that help him learn to sit still? Jury's out. Is sitting still a giant concern to us? No.

Are we willing to risk having giant adolescent in constant movement? Totally, especially as the potential alternatives seem either not such a big deal (ie. he can sit still) or catastrophic (living with the long term effects of a drug whose long term effects are unknown, even in kids without whacky drug reactions).

Again, the fact that others are willing to take these risks is a tribute to them, and all I can say right now is 'thank you', because somewhere along the line, you are helping all of us know what the effects of these drugs will be.

Can Billy control his bowels effectively? No.
But he is way better at it than he was before. His pathology/serology backs this up 100%.

Is he seizure free? No.
But are the seizures doing him damage? Not according to his neurologist. So...

Can he function better as a Billy?

Yes. No doubt in the world. Do we measure function on social compliance or similarity to peers or academic results? No. No, we do not.

Will we pay a giant price for choosing this path? Who knows.

All we know right now, is it seems like a better choice than drug induced bilious vomiting, uncontrollable diarrhoea, cognitive loss, stillness, compliance... oh wait.... we've gone from safety into some other, less formed territory.

It's the conceptual quicksand of difference, really. What are we wanting from our kids? If they can't naturally be like everyone else, should we force the issue? Is it our right, and is it the desired outcome anyway?

(I always get a touch of the early Carrie Bradshaws when I write something like that... then I realise what I'm writing about and whack myself across the knuckles like the nuns used to... it feels like an odd kind of balancing act)

Back on deck...

I do not envy anyone in this game. No-one's choices are easy. Ours have not been, even though (to us) they seem like the natural choices.

If Billy has an infection that we're clear he can't fight himself, we take the drugs carefully. If his diet is lacking in something he needs, we take the supplement carefully. If there's a challenge to him achieving something, we change our lifestyle to make it possible.

We know it's not this easy for everyone, and for that we are grateful. We know it probably won't remain this easy for Billy's whole life, and because of that, we remain massively cautious.

These strategies definitely don't make the challenges magically disappear, as much as we sometimes wish they would. But they do teach us more about what those challenges mean, and they do give us space to consider our next step.They allow us to live this journey a more examined, aware, considered manner.

Oddly, in an unexpected turn, this whole process has made us happier too. It's made us healthier too. It has shown us that sickness, otherness, difference from the pack is not a bad thing. It's just a thing. Some days it's a really, really good thing.

I wonder if Dr Poo will give a crap?

Tuesday, August 21, 2012

Dear Dr Scientist...

I have a question.

It's a fairly specific question, and I'd quite like a specific answer. The only problem is that I have a feeling the answer to my question is just going to be more questions.

It would be great if that didn't mean we quickly rush to a 'oh well, there's nothing we can do' position too quickly (or at all, if possible).

Here's the question.

Why are we not spending time and money trying to ascertain who the medically vulnerable folk are in our population?

My logic (honed by 44 years of thinking, reading and writing... OK, most of it has involved less hefty content than you are used to, Dr Scientist, but bear with me) says, medical action based on statistical success is awesome, as long as you don't fall into the nether regions of those statistics.

Birth control success at 99.9%, feels great each month when you use your birth control and you are not pregnant. The consequences when you are the .01%... fairly large.

Penicillin allergy risk sits at about 10%.  That's great for the 90%, and heartening that it's the overwhelming majority. It sucks quite substantial balls for the 10%, especially for the 1% of that 10% who may well die from their reaction. It has massive consequences especially for the babies who find out the hard way penicillin is not for them.

A 'very rare' vaccine reaction is listed by the CDC (Australian figures are much harder to source, Google wise... sue me, I'm a kids TV writer) at anywhere between 1 in 100 000 or 1 in 1 000 000... quite a broad range that changes vaccine to vaccine. Also, given that the US has a population of close to 315 million, that's a hell of a lot of people living with 'rare' consequences.

The World Health Organization says it's not possible to predict who will have a mild or serious reaction to a vaccine, and my question, Dear Dr Scientist, is... why not?

We can grow a human ear on the back of a rat. We can land a rover on Mars in real time. We made a sheep without the need for two sheep, soft lighting and a Barry White CD... why can't we work out who is vulnerable?

The cynic in me (or is it the realist) says it's all about money.

It's cheaper to deal with the aftermath than to investigate avoiding the risk. This is especially true if we do not acknowledge a lifelong disability with higher numbers than relatively common conditions (like diabetes or cancer) as a possible consequence of taking on the risk.

The peacekeeper in me wants to believe that governments give more of a crap than that.

Surely, public health, especially the health of children and adolescents comes ahead of financial gain. Surely, a growing and expensive crisis in education and social services is something a government would want to avoid.

The parent in me just wants to protect my child. The human being in me wants to protect other children as well.

And yes, I know that vaccines, penicillin and birth control are protecting children too. Personally, I think they are fab, and should be there along with lots of other procedures that make life better.

But, they need to be safe.

How do we make them safe?

I'm not a scientist, but I'd suggest keeping manufacturers accountable, separating 'testing' out of the mandate of the manufacturer and into the aegis of an independent body, and increasing transparency about how and why ingredients of all broadly administered medications (or whatever the correct word is) are chosen and approved.

Moreover, I'd say, if you want people to continue to use medications with confidence, find out who is at risk and encourage them to make different choices.

The 99% (or 75% or the 10% or whatever) who can go ahead with confidence, then should go ahead with confidence.

The rest can make a different choice.

We should have the right to make a different and accurately informed choice. Billy needs the right to make a different choice. We are not the only ones who need this right.

Just because we are not the majority, doesn't make our safety any less valid.

I remember, as a kid, reading somewhere that you have more chance of being kicked to death by a donkey than being killed in a plane crash. And yet, every year, hundreds of people would lose their lives in spectacular plane crashes.

Interestingly, in a valid quest to ensure people felt more confident about flying, we improved aviation safety. I'm guessing that improvement took a lot of time and money. I'll bet it also hurt someone's hip pocket, but at the same time, it felt like responsible progress.

It wasn't anywhere near the majority of travelers who lost their lives in crashes, but it was some. Death or injury as a possible consequence of air travel probably influenced people to make other choices about travel methods. Especially when the news kept flashing up pictures of flaming fuselages.

I wonder what's stopping us shining a similar light on safety in the medical industry?

I also wonder what all those angry donkeys are doing nowadays...

He really is useful...

There has been one true constant in our adventures in autism world.

The poo issues? Well, they only started after Billy had Transverse Myelitis when he was almost 4. Picky eating? Really only kicked in around 3. Anxiety? Seriously, not an issue before the reflux got bad.

Our consistent companion - Thomas the Tank Engine.

Billy is a hardcore Thomas fan.

I can clearly recall the first contact. We flicked onto an episode of Thomas on the ABC one morning when he was about 15 months old. It was Thomas and the Jet Engine. Billy stopped what he was doing, grabbed the remote from my hand and placed it out of my reach. He stood, transfixed for four and a half minutes.

We had a paediatrician's appointment that day, and afterwards we went to a toy shop. Tiny, toddling Billy wandered through the toy shop and again, stopped in his tracks. A giant tank engine shaped display called him over. He literally knelt before the temple of the tank engine. In a Thomas trance, he chose his first engine - Percy the small green engine.

And so began an enduring love affair.

Billy hearts Thomas, in all its forms. He loves the narrators, from Ringo Starr and George Carlin, through the questionable flirtations with Alec Baldwin and Pierce Brosnan, to the Michaels - Brandon & Angelis. He adores the TV show, even since they betrayed the autistic developmental paradigm by making the faces move. He covets the feature length movies, he consumes the books, he has every kind of train (the ertl, the wooden, the die-cast, the plastic, the wind up, the Subway limited issue, the Hornby and the Bachmann).

It hasn't been an easy relationship.

There were moments when the love of the trains tormented him. In toy shops, where other kids played on his beloved tables and he was too frightened to join in. In dark moments, when he clung to a page of train stickers like there was nothing else in the world, including us. In therapy, when his love was objectified into a motivator or a reinforcer... without a doubt the most exquisite torture a toddler could endure.

I have hidden and given away more Thomas products than I care to recall, at times when we feared his love of trains was taking over everything. But this never, ever felt like the right thing to do... despite all the professionals telling us it was.

And here's why.

Thomas taught Billy everything. He learned colours (for a long time, anything red was 'James'... James cars, James pants, James pencils). He learned directions (forwards, backwards, forwards, backwards... repeat endlessly while lying on the floor with a train in front of your eyes). He learned numbers (we all got this message clearly and quickly, as a misnumbered Thomas train is one of the easiest ways to spot a piss poor pirate non-licensed product). Thomas helped him to talk, to count, to read. Thomas took him further than any of us frantically caring adults could manage on our own.

Most of all, though, Thomas ensured Billy learned about positivity, gentleness, friendship, helpfulness - usefulness.

While I lamented the English class structure overtones in the engines' deferential relationship with the Fat Controller, Billy saw nothing but positive. He can't even see bad in Diesel, or Diesel 10. He reads their motivations better than I can read my workmates' thoughts.

While we feel like we've seen the same thing over and over, Billy finds depth. He can spot repeated shots, he finds characters lurking in backgrounds, he memorises scripts and songs as though they are Shakespeare.

While I wonder when it will end, Billy finds new ways to love. He's uncovered simulators and online games and nasty re-voiced YouTube clips full of swears (hilarious to Billy), explosions (what kid doesn't like a good explosion) and terrorist plots (yes, really).

More importantly, Thomas keeps him company. Thomas is his safe zone. Thomas is his friend. Thomas is his expertise.

Billy has other loves, especially as he veers perilously close to tween-age (he will be nine in November).

David Attenborough and all animals associated with him (read, all animals), zoos, Spongebob, Phineas and Ferb, Regular Show and Adventure Time... all approved Billy fun. He is morphing, reassuringly, into peer mandated, sophisticated popular cultural product consumption.

But a day does not go by, still, where Thomas and Friends do not make an appearance.

It's more sophisticated interaction now. He has a real tangible ability to make films. So, he re-stages Thomas episodes with his own toys. He films and re-cuts episodes, re-voicing the adventures and tightening the shots. He re-cuts trailers and songs. He makes animations. He writes detailed original episodes... I guess that's Thomas fan fiction.

His sensitive and clever teachers integrate his attachment to Thomas into challenging academic moments. His doctors are understanding that Thomas will help him through difficult procedures. We know anything in the universe is easier with an engine attached.

Even though he's almost nine and they are meant for much younger kids, the residents of Sodor still make Billy feel like the world is spinning on its axis.

Oftentimes, I wonder what the future will hold.

Will teenage Billy be charmed by the offer of a Thomas stamp on the back of his hand? Will he go on a first date with a train in his pocket? Will he attend university lectures listening to The Whistle Song on his iPod (or iBrain, or whatever Apple will have invented by then)?

You know what?

It's not really relevant.

As long as he is happy, who cares how he is happy?

We don't know what the future will hold. We can only speculate on what he has the capacity to achieve. We have no idea what to expect.

Autism has completely robbed us of that ability. Autism and its buddies, chronic illness, have scrambled that path for us, as parents. We don't know where we are headed. The road we thought we were going to walk with our child has changed. It's morphed into something else.

Maybe, it's a train track.

At least, if it is, we all know we are chuffing along among trusted friends.

Friday, August 17, 2012

I wish my gut could talk...

People tell you all the time to listen to your gut.

While I like this as a concept, when life shoves you onto the coalface of something, I find it's a little bit problematic.

This week, as we have for the last 8 weeks, we went to Billy's lovely psychologist for his CBT session. She is a brilliant young woman, who relates to Billy in an incredibly intuitive fashion. She is, in many ways, streets ahead of a lot of folk he has dealt with in his life.

My gut says very good things about her.

The CBT program is also incredibly useful. In the beginning phase, learning to understand anxiety and how it manifests, learning about the tools he has at his disposal to deal with anxiety... all good. He has really responded to this information and its processes.

My gut had only a few minor objections about this.

We have now moved onto dealing with Billy's specific anxieties, and my gut is protesting. Loudly. Spectacularly.

The specifics are almost unnecessary (though I'll touch on some in a second), it's the broad picture of the program that concerns me.

Am I (is my gut) disconcerted because it is uncomfortable to see my child struggling and I want it to stop?
It could be, for sure. Watching your child struggle is not fun and it's definitely counter intuitive to all the nappy ad/kids messily baking versions of motherhood we get sold on TV.
On the other hand, I have spent a disproportionate amount of my mothering time watching my child struggle, well aware that the conflict I feel is NOTHING compared to what he has been forced to experience in the name of 'education', 'socialisation' and the big kahuna 'responsible medical care'.
So... the idea of my soft heart driving the churning in my gut just doesn't cut it for me. Not fully.

Is my gut protesting loudly (for all to hear) because I have no real idea of what is right or wrong therapy wise?
It could be, definitely. I have recently chosen to spend an hour a week working with a wonderful counsellor on my own psychological journey, and it's only the second time in 44 years, I've done such a thing. So, I am no expert in this game, in fact, I'm a true novice.
On the other hand, in our autism journey so far, we have researched and observed many behavioural programs. We have consciously chosen to not enroll Billy in these programs before because we have not seen them as a good match with his temperament and needs. Moreover, the practices within these programs, effective as they can be, do not appeal to our sense of... what is it..? Justice? Humanity?


Is my gut protesting loudly because we're doing something that's not right for Billy?
I have no idea.

Autism or no autism, I have never been comfortable with telling kids what to think. I'm not a big fan of telling children their behaviour is 'wrong'. I have never, ever thought it made sense that adults should be automatically right in the eyes of a child. Actually, that last one is a no brainer.

So, sitting in therapeutic situations where a child is given an arbitrary number of times he can say something, and then no more... feels kind of wrong. I get that asking the same question over and over is annoying (dear god, how I get it). But... is it my place to insist it stops? Is placing a random limit on repeated questions the right way to go about it? It gets the job done for sure, but is it fair?

It seems like the adults are saying the child's behaviour is wrong.

Billy's behaviour doesn't seem wrong to me. Different to mine? Sure.  Inconvenient? Occasionally. Challenging? Maybe. Counterproductive? To the therapy aim, sure. But it's him. It's genuine. That can't be wrong.

Approaching the need for change with just saying... your choice is wrong (or even worse, not saying it, just working on that premise without explanation)... it rankles with me.  I can see that presenting him with a broader range of options to choose from could help, but assuming his behaviour is intrinsically dysfunctional and lacking in logic... no.

The other thing that concerns me is the idea that external reassurance is an undesirable.

Billy has learned many strategies in is life, to his credit. He definitely carries some anxiety around with him, but, he has never ever been crippled by it. We chose to take this CBT on, because Billy's GP suggested (and his neurologist agreed) that his reaction to sound was partly anxiety related and needed to be worked on. Even though we feel strongly there's a solid biological basis to his issues with specific sounds (and his ENT agrees), we are under a certain amount of obligation to follow the suggestions of Billy's team. So, we did.

One of Billy's coping strategies is to seek reassurance from one or both of us.  His parents. Most autism parents joke about being the 'spare brain', the back up plan in their kids' lives. It makes a lot of sense to me, and it's a role we have taken very seriously up until now. In a world that confuses him on a good day, and assaults him on a questionable one, he needs a safe zone, I would have thought.

So, to be told that we should not reassure him, but instead to place limits on his need for reassurance, is about as counter intuitive as it comes.

The idea, which I understand intellectually, is that if we take away reassurance from us, he will be forced to form his own strategies to cope. This would make perfect sense, if he wasn't Billy and he wasn't autistic. The world can scramble this kid with something that the rest of us don't even notice is there.

Just as leaving him in a room full of toys as a toddler wasn't going to teach him how to play, removing one of his emotional fall back zones, feels a lot like it's doomed to fail. And probably hurt on the way down.

If I'm thinking all of this, I can only imagine what Billy is taking away from it - consciously and subconsciously.

And here's where my mind really starts spinning. Spinning me back to a point we've hit a thousand times before.

At what point, is an autistic child allowed to follow his own impulses? When do we say, 'this is like forcing a paraplegic child to stand up and run because everyone else can'? Who says 'normal', or close to it, is the aim?

All this therapy, surely, should be aiming at happy, at functioning at his best, at secure in his own skin.

Why does this behavioural therapy feel so... not like that? Why does so much of what the world expects of Billy, feel like we are forcing him to be someone he's not.

I'm all for learning new things. Presenting options in a way that he can understand seems like a great aim.

But if we've learned nothing else in the last eight years it's that telling him to be 'normal' is as insane and offensive as insisting he change his gender or his skin colour. Even worse, is assuming that mimicking 'normal' is success. Even worse again, is assuming neurotypical approaches are comprehensible or appropriate to him right now.

I can't be sure, but I think my reservations are less about being pro-autistic, and more about being pro-Billy. As I've said before, the idea of being anti-autistic is incomprehensible to me. As incomprehensible as saying to any child, your behaviour is wrong.

I'm not even sure that's what's actually happening in CBT. It might just be what I'm hearing. Maybe it's bringing up old auditory halucinations of nuns with giant canes and notions that I should be more Madonna like (well before that Madonna).

It's funny, but with the whole diet/supplements journey, I get it now (lord knows, it took me long enough). He's not always thrilled about the changes or the insistence he swallow one more spoonful of something, and that conflicts me slightly, but...

I see that health is the aim. Not to be 'like other people' but to be the best you can be. It's catered to his body, not some cookie cutter idea of good functioning. I see too, how the transformation in Billy's health has grown from the inside out. He feels it, and it allows him to change where change is possible. It doesn't measure him against others, it allows him to be himself, with substantially less physical discomfort. If he doesn't feel improvement, we reassess.

So what's the difference between focusing on improving health and improving behaviour?

I have no idea, really.

One feels more authentic. One feels more confronting. One seems kind of cruel. One feels kind of confusing.

Which one is which? I have no freaking idea, really.

What does my gut say?

Well, since it's gone gluten free along with Billy, and it feels infinitesimally better, it says 'Don't give me gluten'.

Beyond that it says, 'You are driving this bus, lady... suck it up.'

Helpful, really.

Friday, August 10, 2012

Moving the spotlight...

I spend a lot of time in autism world.

We live with it, we talk about it and we read about it. We devote an inordinate amount of time finding clean connection points between autism and everything else.

This week, autism took us into non-autism world, rather than the other way around.

And, like most things that happen, it got me thinking.

Billy and I were involved in a photo shoot for a prominent magazine here in Australia. The photos are to support an article written by another autism parent, exploring the question of why we all know so many more families with an autistic child than we did when we were kids.

The crew that came to take the photographs had very little experience of autism. They were respectful, curious and completely supportive of Billy.

Like any parent, I was concerned about how my boy would handle being photographed. I know how hard it is for us to get a photo of Billy looking at the camera (we take the, click 20 times for one 'successful' photo, approach). We totally get why that is, it's fine. No biggie.

Would the professionals get it, though?

Would he be able to understand their requests. I know how long it took us to adapt our way of speaking to maximise the possibility of successful communication. Again, we get it.

Would the professionals get it?

Would he be comfortable with four new people moving things around in his house? Would he just decide he wasn't doing it? Would the dog bark and ruin the whole thing for him?


Billy was a legend. Pure and simple.

He wasn't just comfortable, he was in his element. He loved the crew. He did what they asked. He worked with them, while I wasn't with him (I had the great luxury of having my hair and make up done, and being given wardrobe to choose from). He wore new strange clothes that had sticky, hanging labels in them and he wore them like a child model.

At the end of the shoot, the crew (who shoot with kids all the time) said he was one of the best 8 year olds they had ever worked with. They were expecting the usual objections, tantrums etc.

My sweet Dalai Lama autistic boy listened, complied and delivered. He was who he is, and he did what he could. As we have thought, many times before, he does a great job of advocating for what it is to be autistic.

I can't wait to see the final product in the magazine.

I'm really proud to be involved in an article like this. I hope it has the capacity to make real, tangible change in the way we talk about autism.

I think it's crucially important that we move beyond a narrative centered around acceptance of autism. I think acceptance is crucially important, but it's just one step on a long road.

While I find it extraordinary that anyone would choose to NOT accept autism, I have to respect the stories of autistic adults who feel incredibly strongly that it is, indeed, a problem.

But... so often, words like acceptance and awareness are used as blankets to stifle the ruthless kind of examination that, I believe, a condition like autism requires.

Without wanting to seem overly dramatic (I do write TV, after all), sometimes our adventures in autism world seem like the plot of a bad movie to me.

I'm watching and I'm screaming at the screen.

I'm thinking, 'Why don't they see (insert trend, pattern, blatant hipocracy)???'
Or I'm watching innocent minor characters wandering blindly into potential peril going, 'Stop! Think about this for a second!'
Or, worst of all, I'm seeing the dark side of seemingly reliable professionals and trying to find the language to make them bright again...

I've written a million times about the issues I think need more attention, autism wise -  the health implications, the need for an understanding of what autism actually is organically,  respectful medical management of the condition, clear responsible public health acknowledgement of the vulnerability of some children...

It honestly makes no sense to me to say that focusing on these things equals a lack of acceptance or hinders reliable awareness of autism or autistic people. It's like saying trying to understand epilepsy is undermining the legitimacy of living with it.

If I read one more 'autism is not a disease' thing on Facebook, I'm going to explode.

What's a disease? 

Well (ex-school debate team member reporting for duty), Merriam Webster says: a condition of the living animal or plant body or of one of its parts that impairs normal functioning and is typically manifested by distinguishing signs and symptoms.

Is autism that? Um, yes. says: a disordered or incorrectly functioning organ, part, structure, or system of the body resulting from the effect of genetic or developmental errors, infection, poisons, nutritional deficiency or imbalance, toxicity, or unfavorable environmental factors; illness; sickness; ailment.

Is that autism? Yup.

So, autism is a disease, by definition. What's wrong with accepting that? Is it because we think of disease as something we can prevent or cure?

While I respect that others disagree, I believe prevention of, or a cure for autism would be a brilliant thing - not for a desire for 'normal' but for a lack of debilitation. 

Living with autism is not a bag of apples, a lot of the time, and very little of that lack of apples has to do with a lack of acceptance (in our world at least). It has to do with struggle - with motor skills, with processing skills, with communication, with ill health that is connected to autism (gastrointestinal, immune, seizures).

I don't see many campaigns to shut down the search for a cure for MS or lupus. I don't imagine it would be considered appropriate to shut down the campaigns designed to promote a lifestyle that would prevent people developing Type 2 diabetes.

If people love being autistic, that's awesome. If people don't want their autism to be cured, that's excellent. What isn't excellent is that somehow, accepting that autistic people absolutely have an absolute right to their views about autism, means that the rest of us have no right to any view at all.

We work incredibly hard to ensure Billy is aware of and positive about, being autistic. He's smack bang in the middle of a generation increasingly full of autistic people, which would make his life easier if he actually had the capacity to give a crap about whether people around him were the same as him or not. Oddly, autism denies him that ability. And yes, I understand many autistic people do have that capacity.

We work even harder to keep Billy alive and functioning, and more and more of our friends are finding themselves doing the same. We are not unlucky, this is autism. It's the same autism that makes the high functioning role models we make movies about and the autism that prevents spoken language and the autism that allows constant self-injurious behaviour and the autism that makes social struggles, and also the autism that makes a few of the NASA scientist who landed a Mars rover.

Right now, as a society, I reckon we are doing a great job of NOT preventing autism, which I guess is great for the people who think it's not a disease.

Despite ever increasing numbers, and ever diversifying presentations, and ever more obviously sick children among autistic numbers, we are not being encouraged to change our lifestyles or public health policies. Instead, every step of any road to change is ambushed by economics, vested interests and the odd idea that acceptance is the opposite of care.

Acceptance and awareness are wonderful things. They are incredibly important to me. That's why we chose to pursue a complaint against Billy's school all the way to the Australian Human Rights Commission. Not just to 'win' but to set a precedent, to have a blatant infringement of his rights recorded publicly.

I don't know any autism parents who would not fight, as we did, for their child. In fact, all I know is autism parents who do fight, every single day for their children at school, at home, with doctors, in sports teams. They fight for acceptance, and they increase awareness, along side their children and other autistic people.

But in my mind, acceptance cannot replace scrutiny or examination or clarity. It makes no sense to me that the status quo should remain. I can't imagine a society having observed kids being born with spina bifida, actively not thinking it should throw everything it has at working out why? As it happens, we worked it out, we reduced the incidence, and it didn't make people with spina bifida any less accepted.

Acceptance is Phase One, in a long, long, long campaign. It's not an either/or.

So... for Billy and I to play a small role in shifting the narrative, in non-autism world, past (often erroneous) 'this is what autism looks like' frameworks, and onto 'why is there autism?' makes me proud.

Also, a little fearful of the photos of me wearing actual designer clothes and actual make up. I fear that might push social change in a whole other direction...

Sunday, August 5, 2012

At Hopeful Parents...

I'm at Hopeful Parents today.

Formulating a call to action of sorts.

Click through if you'd like to read it, and a bunch of other good stuff.

Saturday, August 4, 2012

Exploring the unexplainable...

Autism is an odd concept.

It's a diagnosis. A word we all recognise. A concept we all understand.

Or is it?

This week there was another discussion on another facebook group about the 'truth' of autism management. Someone posted something with a heavy biomed focus. Someone else felt the need to warn everyone that this was based on 'poor science' and shouldn't be viewed. Drama ensued as the discussion wandered from laws of gravity (concrete science) to the unlikely existence of coloured unicorns (proof that science is concrete) to athiesm (proof that science is important).

The discussion ended in a stylish grab for victim status ('I offer an opinion and I get attacked' style) which is the mocktail of the internet debate drinks menu, in my mind. The information was forgotten completely, in a debate about what is valid information and who possesses the truth.

Anyone who spends any time on the internet at all (pretty much all of us) is used to this nonsense. Anyone who spends any time in autism world, is unfortunately routinely battered over the head and exhausted by it.

Who is right? Who is wrong? Who knows why? Who knows what to do? Who do we listen to and who do we ignore? How do we know how to choose?

If vaccine safety and biomed is on one side, and hear the diagnosis, shut up and think of England is on the other, then our journey has taken us, absolutely, from one side of the argument to the other.

When Billy was born, I was passionately pro-vaccination. I was a fervent user of massively toxic cleaning products because a clean house was the most important thing. I thought I ate well, but really I did not. I did everything my doctor told me to, because I had no reason to suspect they didn't know what they were talking about.

I vaccinated bang on schedule, and when Billy had adverse reactions (swollen tongue, ptosis and loss of reflexes at birth/8weeks/16 weeks, then developing german measles after the MMR at 13 months) I believed the doctors' assurances that this was uncommon but not worrying.

Even when he lost his previously acquired language and retreated socially, we rationalised that he was just growing up quiet.

Before Billy was diagnosed, we were referred to a paediatrician who was heavily biomed oriented. His approach scared us so much, we rejected the whole idea for years.

We did everything BUT veer off the mainstream path, in an effort to keep our son well. We did exactly as we were told, exactly what was expected of us as parents.

Then he developed Transverse Myelitis when he was three. And no-one could tell us why or what to do to protect him from further potential demyelinating, auto immune attack. Despite being asked to commit to a longitudinal study of vaccine injured children and admit personal liablity in our choice to vaccinate, we were given vastly conflicting advice about whether it was safe to continue to vaccinate further. We chose not to.

Then Billy developed chronic constipation and no one had any solutions. We were told it was common among autistic children. After trying the drugs, and realising we weren't comfortable with a young child needing medication to poo for the rest of his life, we started peering across to the world of complementary medicine.

Then Billy developed reflux, but no-one picked it, despite multiple trips to various specialists. The consensus - that we should remove his tonsils, despite a complete absence of tonsilitis. We complied, in the hope it would help him sleep (his principal symptom was coughing and snoring leading to disturbed sleep). We prepared him for surgery as well as we could, but the journey was rough.

Then a dentist realised it was reflux, and we were reassured by a GI doctor that reflux was common among autistic children. Billy had a violent reaction to the PPIs he was given.  We started seriously looking for natural alternatives to avoid the bilious vomiting spells that were somehow considered a viable alternative to reflux.

Then he developed seizures, which have also been written off as a part of autism.

You may be missing my tone here, so let me clarify.

We feel that mainstream medicine has let our child down. We think that is too high a price to pay for compliance.

We do not feel we are being irrational in our choice to clean up our lifestyle (no non-plant based cleaning products, no plastic, no pesticides, no toxic anything wherever possible in our living environment), clean up his diet (GF, CF, no colours, no preservatives, organic where possible) and to add a regimen of supplements under supervision (prebiotics, probiotics, Omega 3 and 6 oils, b12, specially formulated multivitamins). What we are doing is minimal, in reality.

We do not do anything dangerous. In fact we protect him, way better, that mainstream medicine ever did.

And here is why.

He is not a statistic to us, but he is to the doctors. In medical terms, he is one of the unlucky few. He is collateral damage. He is one of the ones who will need to rely on the herd, for immunity and for basic care all his life.

He is not a mystery to us, but he is to the doctors. This might give the impression that they are carefullly collating clues to solve his medical quandry. This is not what is happening. Mysteries and medicine do not mix outside of TV medical dramas. Mysteries are met with phrases like 'we don't know' or 'it's the hand that God dealt him' or worse, 'don't worry, Mum'.

We do not think it is right to leave our child languishing in physical ill-health, never mind precarious mental health. In the absence of anything but short term pharmaceutical solutions from the mainstream, we have learned to carefully choose the complementary. We still see a battery of mainstream specialists, and we listen very carefully to what they have to say. We consider their solutions and then we look for less potentially damaging, long term alternatives.

We read everything we can get our hands on. We consult as widely as we can. We seek information and opinion constantly.

This is not an ignorant journey. It is not a passive journey.

As far as I can see, our decisions to blithely vaccinate and operate, in the past, were far more ignorant and passive. Definitely, they were far more damaging.

I understand people's need to hold onto the traditional way of doing medical or health related things. It's what we know. It is promoted as being researched and tested and validated. It is supposed to be safe.

But, for our child, it was not safe. The doctors agree, even though they admit they don't know why. We know too many children for whom it was not safe. Too many kids with a similar history, who had skills and lost them or who had health and lost it.

To be honest, I would give anything to feel comfortable about giving Billy any kind of medication. I would give anything to feel safe about his ability to withstand environmental toxins. I would give anything to have a clear picture of what his future health might be.

I need to know what to do. Mainstream medicine has done a great job of showing me what NOT to do.

So... when people throw 'truth' around, like it (a) exists and (b) is universal and (c) irrefutable and (d) unchangeable, I don't lie down and take it.

We believed the 'truth' and it hurt our child.

So now, we seek alternatives.

Some of it has validated research behind it. Some of it has generations of accepted wisdom behind it. Some of it makes a lot of sense.

More sense than continuing to do what the mainstream told us to do, because that clearly backfired.

The upside? We see a lot of positive change in Billy (and ourselves). We have a holding pattern of health and function. We will continue listening, learning and hoping for the best.

The downside? We often find ourselves fighting back a tide of self-righteous know it all, opinionated (primarily virtual) blowhards who have not lived what we have lived. For reasons only known to themselves, they need to assert their rightness, assuming that people who do not adhere to their path have blindly slurped some guru's kool-aid and signed up to intravenous snake oil.

I hope, more than anything, that some time in my life, we can really say we know more about autism so these ridiculous conversations can stop.

I hope we know why autism happens, and what it is medically, and how we can manage it and how we can prevent it. I hope we can stop having ridiculous, pointless discussions about who is right because we know what is right.

We need to get rational about this.

Autism parents who want their children to be healthy are not the enemy.

We are parents, who want our children to be healthy. 

No hidden agenda, no mystery.

I have seen my child struggle, in deep distress, in life threatening situations. I don't just want to minimise the chance of this continuing for him, I also want to ensure future families do not have to endure similar things (if it is possible to avoid it).

If the internet blowhards had any sense at all, they would be thankful that there are people who are willing to stand up and do this section of the hard work for the rest of the community. No-one is asking them to join in. They have the luxury of standing by on their medical high ground, and watching as others discover a potential parallel path.

But that's just it.

People who lurk on internet boards and shut down any point of view but their own are not interested in change. They are interested in being right. And when they can't be right, they can play victim and call in the moderators. And when they don't get joy there, they troll about for a new place to be right.

I am quite happy to admit I have no idea if I'm right. I just know what we did under the direction of the doctors (and social pressure) was wrong, and I can't in all conscience risk doing that again.

Our journey is not uncommon. If it's not familiar to you now, it will likely be in the near future. This condition strikes more children each year than paediatric AIDS, diabetes and cancer combined.

The current approach to management and treatment and prevention of autism might seem OK to some folk. It does not seem OK to me, and it won't until we acknowledge the medical nature of the condition. It won't until we acknowledge the role of the environment and it won't until kids like Billy are no longer considered mysteries.

While this is happening, it would be great if someone could invent a button on the internet that zaps people before they think arguing with invisible strangers is a productive way to spend their time.

Actually, let's do this one first.