Valerie Foley

Archive for the ‘Action’ Category

Leap off the hook, if you dare…

In Action, Environment, Medical, Parent issues, Research, Uncategorized on June 11, 2013 at 12:02 pm

Today, I unfriended someone I barely know on Facebook. I’m not a massive un-friender, as I’m of the opinion that virtual relationships are not the ones I should get too stressed about.

But today, I drew a line, and I think it’s a healthy one.

The un-friending came because the friend in question posted something about vaccination. It was an article about how if only a family had vaccinated their child, the child would have been alive. It’s a big call, not one that has any possible basis in provable fact, but more to the point, it made me think.

Here’s what it made me think.

I don’t care to engage with people who have not been dragged screaming into autism world about the issues pertinent to autism. I don’t think it is relevant or even interesting. Whether it is about vaccination or diet or environmental toxins or social policy… I’m out. Talk amongst yourselves.

I would like to speak about those things with doctors and researchers and policy makers and public officials. I don’t care what the general populous do, think or care about. And I mean that with great love.

The crisis we face, within the autism community (a screaming need for rigor, research and respect) is huge. It will hit the mainstream soon enough, when the costs drastically escalate and I’m sure they will care about it then. For now though, generalised awareness means nothing to me.

And here’s why.

Whenever there is an obvious crisis, such as the devastating tragedy involving Alex Spourdalakis, the general public (and many of the particularly shiftless within the autism community) leap gleefully on the opportunity to distance themselves from the crisis. People make disgusting statements on social media and on the websites of media outlets condemning people they don’t know, claiming all sorts of stuff they ‘knew all along’.

From a safe turret of moral high ground, people and their lack of anything resembling real-life understanding crow self-righteously, shoring up their own correctness. They use tragedy to reinforce their own life choices.

So a baby dying of whooping cough, is a reason to pat themselves on the back for vaccinating their own child (and thankfully avoiding the tragedy of an adverse event).

A child being denied medical care is a reason to believe medical care is not required by their child (happily pushing responsibility for their child’s condition onto their own child’s temperament/genetics/luck).

A alternate thinking medical professional being shouted down by the system is a reason to believe the system is doing the right thing (conveniently forgetting the ever growing reason that medical professional is speaking out in the first place).

I can’t imagine living in a world where I was looking for reasons to not take action. I can’t imagine caring about opening my mouth to shout ‘the system is perfect, we should question nothing and suspect those who suggest such a thing!’

Well, not unless I had a vested interest in not acknowledging or fixing anything…

The reality, for many of us in autism world, is that our children are one of many facing an uncertain tomorrow, never mind an uncertain future.

Most average people, as much as I want them to (at the very least) empathise with our family’s plight are too busy washing rugby outfits, stressing about their dogs and working out how to pay their mortgages. They don’t have the space in their minds to consider preventative autism policy, phenol reduction vs GAPS or why teachers forget everything they claim to know about the spectrum when their day gets busy.

And I think that’s completely OK.

If I didn’t have to police every foodstuff that enters my son’s personal space, I bloody wouldn’t. I dream of dropping him off at school and doing… something indulgent like working in the company of adults. I’m hopeful there will be a day (and a night) where every twitch, pause or drool isn’t the beginning of a seizure.

So, here’s my gift to the general public, and anyone else who wants it.

You are off the hook. I genuinely don’t care what you think about what I think. I have no judgement of what you do and I bear only the teeniest grudge (hey, I’m nothing if not honest) that your child wasn’t whacked with the random shatter-your-life stick mine was.

It’s OK.

If you don’t want to be autism aware, don’t be. If you don’t want to dig deeper into the key autism issues, don’t. You have other things to think about. Think about them. Do what is important to you. Turn off the blue lightbulbs and chuck out the stupid puzzle pieces, they are useless anyway. Live your lives, do your jobs, be nice to everyone, including the autistic among us.

And now that you are in the clear, let me train my beady eyes elsewhere.

Doctors, heads up. I am coming. And I’m not happy.
You need to lift your game, autism wise. No more denials. No more writing off the concerns of your patients. No more pressuring people to do things that are counter-intuitive. You need to listen, nod politely and action at least one thing that we ask of you. Instead of saying, ‘there’s no evidence of that’, admit that evidence had eluded you or is agin your philosophy or has yet to be established. Instead of insisting current practice is safe, do me a solid, look my child in the eye and admit we could do better.

Researchers, no hiding behind the snack table… I’d like a word.
Who’s driving your decision making? Because if it’s you, what’s stopping you from wondering why autism rates are accelerating at a frightening pace. If you are one who currently thinks it’s overdiagnosis, or the rise of the super doctor, please go to a school and pick a random teacher, preferably one who has been teaching for 10+ years. Ask them what they think about the number of kids with high support needs in the mainstream. Then come back and convince whoever drives your decision making that you should start asking some questions. I’m not going to waste finger strokes going through my question suggestions, because many of us have done it many times before. Besides, you need to engage properly with the issues, rather than spend yet another year proving the unproveable (you know the game… without A, B would not be possible). Please stop talking to the ones you know, and front up to the ones who need your help.

Finally, politicians. We really need to talk.
I know right now in this country, you are busy starting and stomping on bushfires in preparation for the election. But once your burns heal, 2% of your children have some needs you are ignoring right now. Right now they involve education, therapies and medical care. In the blink of a parliamentary eye, they will also be needing housing, lifelong welfare and intensive medical assistance. None of these things are cheap now, and currently the adults in these kids’ lives are handling the cost (we’re the ones that inexplicably carry higher levels of personal debt than you would like and yet lack spectacular electrical goods or sports vehicles). However, those adults won’t be around forever. That’s where you come in. Because as much as you are currently being sold a happy line about interventions wiping the autism (and its pesky additional needs) out of 50% of the diagnosed cohort, the reality is something much more closely resembling… the complete screaming opposite. Listen to the people, not the people who are profiting from the people. They may promise to put a rose coloured wall between you and the costly reality of autism, but they have not, they can not and they will not.

In an ideal world, we’d all care about everything that needed care. In the real world, we just don’t. We care about what has an effect on our lives, and from that care, in some, comes action.

I don’t care who wins rugby matches of any level, at any time, in any place. I love and celebrate the fact that other people take that pressure off me.

I don’t care about any dog beyond my own. Again, I am trilled that other people take on the world’s canine dramas, and I adore them for their passion.

I don’t care who vaccinates and who doesn’t.

I care about changing the system so we know who is vulnerable to the effects my son and many others suffered, so we can minimise those catastrophes.

I care about cleaning up the environment for a bunch of reasons, not the least of which is to avoid making more kids vulnerable to ‘mysterious’ developmental disorders.

I care about fixing our food supply, revising our approach to medication, being rational about the limitations of our current education and health systems.

I care that the people whose job it is to make the world as safe as possible stop denying that autism is a massive issue and start making it less so – by being brave, asking questions and following through.

And I do care a little about the feelings of the un-friended person. I don’t want her to feel bad. I want her to feel free to speak her truth to those who want or need to hear it.

Her  lack of Facebook regard for the issues in my Facebook life is as OK as my lack of Facebook regard for whatever Facebook issues are crucial to her.  When we are both off Facebook, away from the realm of likes and links, we can change the world, much more effectively.

I will miss the pictures of bowtie wearing kittens, of course, but some sacrifices must be made for the greater good.

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.

Putting the big girl’s undies on…

In Action, Parent issues on May 26, 2013 at 7:34 am

Image

I’m inspired by the news coming out of Autism One in Chicago, and the MINDD International Forum here in Sydney.

I’m bored with people playing victim and bully and attention seeker and insta-theory genius.

I’m interested in action, change and getting stuff done.

I’m going to wear this ring – to remind myself I am serious.

Emotion, the enemy of nothing…

In Action, Parent issues, Perceptions on April 14, 2013 at 3:32 am

The arsenal of  ‘you crazy autism parents are wrong’ weaponry needs some attention paid to it. If you start picking the labels off it, there’s truly nothing meaningful underneath.

When evidence and science are not being foisted about as reasons why we are all unreliably nuts, we get ’emotion’ thrown at us. I’m talking choice arguments like, ‘your logic is clouded by emotion’, ‘you are inventing irrational theories because of your emotions’, ‘you are just being emotional’… you know, the kinds of statements that make domestic arguments go so very well.

Let’s pull it apart a little.

On a purely human level, any parent who has seen their child struggle with anything, gets the emotions we are talking about here to a greater or lesser degree – frustration, grief, desperation, hope, pride, anger, resolve.

On an intellectual level, these are the emotions that provoke thought, rigor, action.

On a historical level, these are the very things that have made invention, innovation and change happen.

So, I’m just not buying that emotion is a counterproductive part of this journey.

Instead, I’m thinking throwing shade over natural processes of human existence is more of a deliberate tactic to divert the need for change.

We are parents (genuinely emotional job).

Our children are struggling (stimulates the odd emotion).

We want to know why and we’re being denied answers (tends to provoke responses in the right kind of person).

There’s no doubt there are many parents who share a similar journey to mine who do not want answers. Many of them are friends of mine (maybe yours too). They are flat out living. They trust the experts will take care of it. They do not care why their children have autism, they simply care about living the best possible life with it. Some choose to view their autistic children as gifted, some choose to view their autistic children as irritants, some have no view of the autistic part of their children at all. These parents can be vocal about their stance, or not. While I am not one of these parents, it is absolutely not my place to judge their choices. Speculate, privately, maybe a little, but not judge.

My take on the emotions that motivate me in this game?

If I didn’t let them be felt, express them, share them, acknowledge them, recognise them in others… I would be denying reality. Plain and simple.

Our personal story is not one of the most extreme, and yet…

We have watched our child be tortured (literally) by the presence of other children and the noise they make.

We have watched our child become paralysed (literally) in front of our eyes by a provoked auto-immune disease.

We have watched as his body has been poked, prodded, drained, infused, monitored, imaged (literally) as doctors pondered and never fully answered what was/is happening to him.

We have watched as trusted professional people who refused to understand him, mishandled him in a variety of settings. We have watched as those same people, under scrutiny, lied about their actions and their understandings.

We have watched our son, through all of this be a human being who values joy, humour, compassion and love over everything else.

It is not surprising we have some emotion tied up in all of that.

It is surprising that ‘experts’ would use the presence of that emotion to question our credibility.

And we are, again, by no means the most questioned.

I see, again and again, change agents in the autism community torn down by others. It can be other parents doing the tearing, or ‘experts’ doing the tearing. They do it openly, they do it subtly. It doesn’t matter how they do it, to me, though, the fact that they need to do it is the concern to me.

If, as I read this morning on Facebook, autism is not a disability and just a lovely set of accommodate-able quirks, and we should all be happy with that as a standpoint, because our peadiatricians (80% are on the spectrum apparently) agree…

… then, why the need to discredit those who think differently? Especially by using their normal parental emotions as reasons.

If more and more autism is OK with you, why be threatened by those who think it is not?

Forget the numbers (as if you can), forget the future (as though you can) and focus purely on the experience of being a parent and seeing your child unable to cope with normal life. Your child has a condition that makes the simplest things anywhere between troubling and impossible. No one knows why. No-one knows if it will ever go away. You may even suspect your child was once healthy, and they became… not healthy.

The best response strategy is acceptance, right? Put a lid on your emotions and get on with life. Keep Calm and Carry On.

Here’s the thing.

Do nothing, is a deliberate social choice.

Socially, economically (in the short term), politically (in a shortsighted kind of way)… do nothing is also much much cheaper.

When your doctor says, ‘you are clouded by your emotions and your gut instincts about what caused your child’s autism are wrong’ – why do they do that? What is the aim there? In the moment, I’m sure they just want you to feel better. But the social aim about the condition called autism is ‘do nothing.’

When other parents say, ‘it’s OK, doesn’t Bill Gates have an ASD?’, the social message is ‘do nothing’.

When autism service providers say, ‘we can teach your child to cope’, the social strategy on autism is ‘do nothing’.

Where the personal meets the social, I get to this – It’s not just about me and my family, it’s about all of us.

When we normalise the existence of a condition, we are not paying tribute to those who have it, we are condoning the actions of the society that does nothing to stop it.

When we question the credibility of the witnesses to the birth of that condition, we are choosing to condone doing nothing.

If you want to do nothing, do nothing. It’s your life. But do not work against doing something.

Because if you do,  your children and your children’s children’s children’s children will be paying for that choice – emotionally and literally, in the provision of disability services, housing, welfare, education, medical care.

Know that you are saying it’s OK for more and more children to be diagnosed with autism, and if trends maintain, those children will not have the kind of autism that makes them a quirky paediatrician or a sneaker wearing billionaire. They will have the kind that puts them in hospital a lot, on medication a lot, and in the presence of befuddled first responders a lot.

Obviously, that is a choice you are free to make.

I am not OK with that. My baby will not be a medical professional. He is unlikely to be any kind of professional. It is not easy to say that out loud.

I am allowed to be sad. It’s OK for me to be disappointed. There is nothing in the world wrong with my being angry. The problem, for me, would come if I did nothing with those emotions.

In my mind, anything that compromises someone you love is worth doing something about.

I love my own child to the moon and back, which is why I can acknowledge that what needs to change it is way way way bigger than even that.

I have no evidence

In Action, Perceptions, Research on April 8, 2013 at 2:07 am

One of the most insidious weapons in the war against medical and social respect for autism is the word ‘evidence’.

It has been very cleverly twisted to mean, ‘anything anyone but the most popular of scientists say is bunkum.’ It ignores the vast accumulating and changing breadth of knowledge that is science. It presumes that ‘truth’ is something that is and can never change.

It’s incredibly childish, and way too close to the energy behind religious zealotry for my mind. More than that, it is deeply unhelpful in the situation we are in now.

To be clear, the situation I am talking about is an epidemic of a behavioural diagnosis, that was previously rare but has somehow become genetic, and has spectacularly compounded in less than 25 years.

You know… ‘autism‘.

Instead of evidence being the thing that helps us solve it, evidence has become the thing that reinforces the idea that the situation is out of our control.

Are we that stupid/complacent/easy to placate?

It seems we are.

To compound the issue, rather than demanding pin point, ruthless, specific science, we are happy to be seduced by hope based narratives that gain their unquestioned credibility because they have been lived by well loved, and rightly respected adults with autism.

With all respect to those people (and I speak specifically of Temple Grandin and John Elder Robison here), who themselves demand science turn its beady eye on the epidemic, I firmly believe we as parents of autistic people are fools if we grasp the fronds of hope as an alternative to donning the uniform of action.

And here’s why.

Autism, in its rapid rise to epidemic status, continues to morph and change. There are more and more people, with more and varied manifestations of the condition. Children with autism now, are not the same as children with autism in 1960 (plucking a date out of the air) – not medically, not cognitively, not behaviourally, not in functioning level, not in prognosis. And there are a LOT more of them.

While the doctors and scientists argue about which evidence is the most reliable, and adults with autism insist that acceptance will do the trick, more and more children join the fold. A fold that has no mappable future – no infrastructure for housing, healthcare, employment, financial support.

We don’t even know what autism is, but we think it’s OK to just keep letting kids ‘get’ it.

We don’t know how to stop it, but we think it’s OK to tell parents there is nothing they can do.

We don’t have an explanation for the rise in numbers, but we think it’s OK to surge forward to a future where at least more than 2% of the population will need lifelong support (that doesn’t currently exist) without any social change to enact that support.

We take solace from the muddy water, because it stops us from accepting its murky depths.

Seriously, are we that stupid?

It feels much better to be told we should just believe in our kids and magic pixies of ability will carry them into middle age, I am sure. I don’t know about anyone else, but I do know my own throat constricts for a fair proportion of every day when I try to get a handle on what the hell will happen to my gorgeous son when we are no longer around.

Where will he live? How will he get money? Who will help him with the medication that controls his seizures and the nutrition that helps his body to function? How will anyone know if he is not OK?

His diagnosis is ‘high functioning autism’, a confection designed to convince parents that it’s not so bad after all. He cannot control his bowels, he needs daily medication, he is unable to plan for or accommodate change, if we asked him to walk five minutes around the corner, he would be lost as soon as he lost sight of his house or us… but he’s high functioning – AKA he can talk.

He qualifies for no adult support at this point, hell, he qualifies for no child support. But he’s fine, right? He should be talking about his science fair projects, not rightly acknowledging the profundity of his challenges.

He’s not, because the depth of his disability precludes that kind of talk. He is like many many other autistic kids, who are rapidly becoming adults. Not adults like Temple Grandin and John Elder Robison, brilliant as they are and as much as the rhetoric had me believe he would be. Adults like the ones NT kids avoid in the streets because they are freaking out about which way is home.

I have no evidence he will be OK, and hoping he will be is not enough.

We need real understanding, real action, real change – not more candy coated reasons to deny the seriousness of what’s going on.

We need evidence, and I for one don’t think I would be adequately and responsibly parenting if I didn’t start demanding it.

We’re here and we have cameras…

In Action, Parent issues, Perceptions on April 5, 2013 at 11:17 am

This week, while co-incidentally basking in the blue light that tells the world there’s nothing serious going on, we transferred all our baby home movies onto a hard drive at home.

We’re both quite fond of our technology, and as media professionals, we are never far from a video camera. Unlike a lot of people, this was also the case back in 2003 when we brought Billy into the world.

A significant amount of time has passed since then, both in units of time and in units of significance.

In the first few years of our lives with autism, we heard a story a lot. It came from the mouths of doctors and therapists mostly. They said, ‘The fact that autism becomes apparent around 2 years of age is because the demands of life outstrip the child’s in-born capacities’. Hilariously (in retrospect), we bought that piece of spin. In fact, we didn’t just buy it, we took it home and swallowed it like so much Kool-Aid.

We were told that being first time parents, we would have missed the subtle signs that something was amiss in our son. We were told that our memories of a child who connected, and reciprocated and obliterated milestones of all kinds were coloured by grief. We were told we just thought he was OK because we didn’t know any better and because we told ourselves he was.

The stench from these statements has been permeating our lives for a long time. It’s got stronger and stronger. This week, it was blown away by a gust of evidence.

We have hours of video of Billy from birth to now. Birth to 4 was on DV tape, which is why we hadn’t looked at it much. This week, we looked at it. And what we saw is remarkable.

Let me preface the explanation of how remarkable, by saying a couple of things.

– I don’t believe all autism is the same.
– I don’t believe all autistic people gain the label at the same time or in the same way.
– I don’t believe autism is anything more than a descriptor (and a scapegoat, but that’s a whole other post).
– I’m not telling the universal one and only story of autism here, just our view as one of many.

Having said that, here is what we saw in our videos.

There is nothing related to the autism triad in Billy in his first 12 months. He is communicating, reciprocating, engaging, exploring, connecting, investing, accumulating, accepting… he is not lacking anything. He is not struggling. He is a normally developing baby.

He is not what he became.

If anything, our memories have been tarnished by the pronouncements of the doctors. We had convinced ourselves that he must have been ‘autistic’ all along. That the demands of being a one year old outstripped his little being’s capacity.

It didn’t. He lost what he had. It’s clear as day. And it’s all on video.

You can see the day when he stopped responding. He has a rubella rash on his face, gained courtesy of the MMR (‘It’s OK, Mum, about 5% of kids get rubella from the MMR. Calm down.’ ). He’s transfixed by his own reflection. He can’t pull himself away from looking into his own beautiful eyes.

The gaps between the laughter got longer. The furrow in his baby brow deepened. The connection between him and non-essential personnel fractured.

We know, now, that Billy has vulnerabilities. We know, because it has been acknowledged officially by the medical profession that his system is easily triggered into… reactivity, crisis, medical collapse. We’ve seen it too many times (vaccine reactions, drug reactions, transverse myelitis, pesticide induced seizures) and we are very very keen to understand how we can avoid further crises.

We suspect he was born with those vulnerabilities, unseen by us and his doctors, at the time.

We suspect he is not alone.

We are not rocket scientists, and we are not saying anything that other people haven’t said.

The difference is, we have video that proves we are not crazy.

The gift of the Apple generation is documentation. We all have it. More and more we have it. And as gut-wrenching as it is to trawl through footage highlighting, in shining relief, what has been taken from your child… it is there.

I am backing myself. I am backing my child. Something happened. We don’t know what or how, but something happened. Something is happening.

Yes, we are hurt. Yes, we are grieving. Yes, we are angry as hell. Rather than clouding our reason, these things sharpen our perception and focus our resolve. It’s not about statistics. It’s about our kids.

We get arrested if we fail to stop at the scene of a car crash.

Letting the autism epidemic unfold without questioning it, is just wrong.

If it doesn’t involve you now, bless your good fortune, because it will soon.

We need to know what is causing this thing called autism. We need to know how to treat it. We need to know how to stop it. We need to hold each and every responsible person accountable for what-ever-the-hell is going on. Doing nothing is no longer an option.

We can’t be fooled into thinking there’s nothing we can do. We can grow an ear on the back of a rat. We can understand this. We have millions of witnesses.

We are here, and we have cameras.

Who’s Fooling Who?

In Action on April 2, 2013 at 2:17 am

Who’s Fooling Who?

Click the link above to see the genius campaign from Treating Autism in the UK.

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Why are we not studying them?

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

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

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

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

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

Before he died.

Old.

We have to tell these stories…

In Action, Medical on March 9, 2013 at 5:00 am

We have to tell these stories…

This story, unfolding in the USA as I type, is horrific.

In short, a young man with severe autism is being denied appropriate (hell, any) medical care while being held in restraints. For his own safety, one can only assume, though the restraint injuries on his body (among many other abuses) tell a different story.

While the autism community, internationally, has rightly leapt to the support of this family, it’s important to remember that what’s going on there goes on, to varying degrees, everywhere. All the time.

How many of us have been told ‘it’s just autism’? How many of us have stared into the face of a doctor who has absolutely nothing to offer our children? How many of us have bowed to institutional medical pressure, despite every one of our instincts screaming, ‘This is not right’?

If the medical fraternity is happy to stand by and make ‘I don’t know’ faces in the wake of accelerating ASD diagnosis rates, then they should probably consider stepping up and working out how and when to treat autistic folk. If they are struggling now, they’re going to lie down and weep in five years or so.

The more we tell these stories, the less acceptable they will become. The more we tell these stories, the less they will happen.

End of story.