Valerie Foley

Archive for the ‘Perceptions’ Category

What if we’ve got it all wrong…

In Parent issues, Perceptions on May 8, 2013 at 12:08 pm

We are wrapping up a spectacular holiday in the Snowy Mountains. It’s 6 or so hours drive from home, stunningly beautiful and the home of Australia’s highest peak, Mt Kosciuszko.

Billy, contrary to autism related expectations, is a stellar traveler. He loves an adventure, the newer the better. The one caveat is that he is with us. This time, we got to bring the dog, which made it extra perfect.

Apart from being dumbfounded by the lack of McDonalds (all the superfood in the world hasn’t dulled the love of McDonalds chips), Billy is in heaven. He is hiking, looking for animals, identifying wildlife poo, appreciating the art of a good fire and generally loving life.

In these moments, I am reminded (loudly) why we live the way we do.

I am not ashamed to say, despite the contemporary love of connected parent bashing, we have refocused our lives to fit our son. We do what it right for him first. In a parallel universe, we would be quite the obnoxious family.

We do not live a strange life, by any stretch of the imagination, but we do not do things that antagonise Billy, just because that’s what ‘people’ do. He has an issue with sound, so we minimise the effects of the sounds that hurt him. He is overwhelmed by the company of more than a couple of folk at a time, so we home school and mete out his social hours at his request. He has a passion for learning about animals, so we spend our leisure time in the company of the finned, the furred and the feathered.

We do this for a couple of reasons.

The most important, is that it makes us all happy. It also seems exactly the same as what the families with talented sports kids or eisteddfod participants or chess aficionados do – just with animals and quiet and just a few chosen friends. Finally, and seeming like it might compete with the happy reason for importance – all our instincts scream that this is the best thing we can do as Billy’s parents.

A surprising number of people take the time to tell us helpful things like ‘he has to learn sometime’, and ‘you are not helping him fit in’ and the odd ‘you will live to regret this’… and to them we say, thanks for coming, here’s your coat.

Because here’s the thing.

No matter how many ‘different, not less’ platitudes we want to throw around, it seems entirely wrong to forget that different means… different. No matter how much I might have wanted it, Billy is not on anything resembling a ‘normal’ trajectory. He is literally, figuratively and neurologically on his own path.

So why are we encouraged, so rigorously, to force him onto ours?

It’s not about health and well being, that’s for sure. It might be about about a perverse finger crossing exercise that we, as parents of children with developmental disabilities, are encouraged to engage in – the idea that if we attend enough funded playgroups, the condition will magically disappear.

Realistically, though, if the ‘learn to be normal’ strategy is about anything at all, it’s about effectively minimising the need to pay attention to the root cause, the prevention and the treatment of ‘autism’. Maybe with a bit of, ‘it’s best to fit in’ thrown over the top for seasoning.

From the first days of Early Intervention, we were encouraged to teach Billy that his behaviour and preferences needed to be more like his NT peers. He needed to ‘learn’ to play with other children, he needed to be deprived of the things he chose and instead be provided with ‘appropriate’ toys. His speech was wrong, his body made the wrong choices and his brain… well, lets not even go there.

We called bullshit very early on.

Maybe it’s because I have a lot of siblings, maybe it’s because I studied education, maybe I was hugged an inappropriate amount as a child… but seriously, what is right about telling your two-year old they are wrong?

He wasn’t wrong. He was different. And the odd thing was (and the reason why we jumped on the Temple Grandin aphorism bandwagon so enthusiastically at first), different didn’t seem wrong to us.

Different simply seemed different to what we expected, and different has never seemed difficult. It just seems like our son. We don’t feel the need to normalise either him, or his condition. We also don’t accept that his difference is a random roll of the dice, or that it’s untreatable.

People choose to interpret the time and effort we pour into improving our son’s health and functioning in a number of ways, but really, it’s simple. To us, epilepsy is something that needs treatment. So is transverse myelitis. So is chronic GI inflammation. So is self limiting food, reacting violently to high pitched sound, and zenning oneself to sleep in crowded situations.

There’s a sliding scale of fixable, and a sliding scale of what we know anything about yet, and a sliding scale of what people are willing to write off because of parts one and two of this sliding scale. We’re all learning how to handle this, because twenty years ago it was rare.

But here’s the thing.

Billy should be who he is. How normal (or not) that is, means absolutely nothing. Billy should also be the healthiest and most well he can be. Ignoring that would make me worthy of the report to child protective services that a ‘kindly’ teacher treated me to.

And yet, the majority of autism related doctors will happily tell us that autism has nothing to do with health, and health has nothing to do with autism. A proportion of the adult autistic community will say the same, because equating illness with their condition is somehow a slight on their integrity. Because, I often look at sick people as weaker than me… less useful, less worthy. That’s just the kind of person I am.

Gosh, I hope the irony plays out in that last sentence, but quite frankly, if it doesn’t… stop reading.

I think the way we approach autism intervention is wrong. I think the way we handle autism in our education and health sectors is deeply flawed. I think we have framed autistic people as busted NT people, and I think that is ridiculously stupid. As stupid as calling systemic ill-health normal.

The same parental instinct that said, ‘No, my son dislikes the noise of children so he will not be forced into circle time, thanks’ also says, ‘This is a very serious condition (or set of conditions) he lives with and no amount of acceptance will cure it or him. I would much prefer a rigorous application of science, thanks.’

It’s happening. It’s increasing. It’s not getting easier for anyone.

I watch as the media, the government, the sadly preoccupied with renovating the dominant paradigm try to derail the revolution that’s required to solve the disaster that is the autism epidemic, and I see the same faces that told us to teach our disabled child that he was wrong.

I look at the areas of life that I think need serious analysis if we have any hope of slowing the autism diagnosis rate – education, child health (including vaccination), general health, environment, nutrition, industry, economics, lifestyle… and I see the same faces – those who have a vested interest in not fixing it.

It takes one ‘news’ story, about one study, on one aspect of what needs a pile of critical thought, and the great uninvolved suddenly know everything about autism. They know that vaccines are unrelated. They know that ABA is the key. They know that biomed is malarkey.

It seems to have escaped their attention that the media has also taught them everything they need to know about Jennifer Aniston’s pregnancy, Kim Kardashian’s integrity and John Travolta’s sexuality.

The lack of rigor applied to the dissemination of information about autism by the public in general, is depressing but unsurprising. Who wants to think that basic tenets of life like food, medicine and chemical usage needs drastic change? I sure didn’t, until they all came and blew a giant hole in my family.

But I know this like I know I don’t care if Jennifer Aniston never procreates… if we don’t change, the results will be catastrophic. I know this because I am an average person, of average means, who has no idea how her only child will survive on his own in one of the strongest economies in the Western world.

Write off this generation of kids if it makes you feel less confronted, but know that if autism hasn’t hit your family now, it will. Without change, the trend is terrifying. Just because we don’t know exactly which change should happen first, doesn’t make the necessity for it any less.

We know a bunch of things that can have a positive effect, and if I was Queen of the World, I would encourage people to sharpen their skills at identifying the kinds of people who tell them not to try any of them.

Why do doctors tell you diet won’t help? Why do teachers encourage you to medicate your child? Why is a behavioural diagnosis a catch all for a whole bunch of medical issues, acute or chronic that would be cause for major concern in children without that diagnosis?

Because it’s too hard, maybe? Because the change required to even begin to address it is immense? Because we caused it in the first place and there’s too much money riding on the processes that keep it going?

We are doing this wrong.

It makes me as sad as seeing junk food companies running fundraising programs in the same schools supposedly intending to combat childhood obesity with lunchbox guidelines. The vested interests and economic drivers far outweigh soft concepts like well being, caution or anecdotal experience.

Are we that stupid? Are we just programmed to not think critically anymore? Or have we lulled ourselves into such a sense of information security that we need to have something heartbreaking happen in our lives before we start wondering if maybe plastic wrapped white bread and peanut butter with six ingredients might not be good for us.

As my family prepares to head back to normal life, as abnormal as it is, I look at my calm little man. He’s dreaming of wallabies and wombats after getting an unprecedented peek into their actual habitat. He’s planning our next adventure, unaware of the sea of specialist appointments he has to attend between now and then.

He is happy.

Is he capable of being ‘normal’? Probably not. If he was capable, would the extreme cost of being ‘normal’ be worth it? Absolutely not.

In the pursuit of wellness for Billy, I will push the doctors. I will challenge the teachers. I will question the policy makers. I will not, however, twist my son into a socially acceptable shape in the name of therapy, education or success.

Will I do everything I can to make him the healthiest boy possible? You bet I will.

That same framework is, in my mind at least, what we need to do as a society in our approach to autism. Accept and respect the autistic people we have, of course we should… it’s not even a question. Keep going, like we are now,  thinking that no change is required, and that it’s OK for the diagnosis rate to rise exponentially. We can’t. We just can’t.

If that’s all we’ve got, we have definitely got it all wrong.

There’s a big difference between accepting an individual with autism, and accepting that autism is inevitable. One I am all over. The other is as insane as trawling the internet for Jennifer Aniston’s ultrasound pictures.

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.

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.

Fox meet henhouse

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

Fox meet henhouse

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

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

Through statistical models.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Why are we not studying them?

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

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

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

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

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

Before he died.

Old.

We need to talk about ‘autism’…

In Action, Parent issues, Perceptions on March 3, 2013 at 2:10 am

April’s a coming…

If we needed any proof at all that autism is a contemporary epidemic, we just need to look at the ever growing divisions between autism parents.

I think I can safely say, very few of us had any of this in mind when we gave birth.

In recent days, I’ve had conversations with other mid-range veterans about the need for a thinking space where people who are past the initial shock, the initial grief, and the initial ‘hooray for autism’ phases can communicate openly with each other.

It’s not that those things aren’t important for people to go through, in whatever sequence makes sense to them. It’s that once you are past them (if you get past them), your tolerance for their passivity and lack of inertia (and general tone, if I’m brutally honest) starts to atrophy.

It may be because you are facing increasing amounts of serious medical crisis (as opposed to accepting that all these pesky ‘symptoms’ are ‘autism’).

It might be because life is all of a sudden getting really real (in contrast to the ‘they might grow out of it’ mentality we are all lulled into… newsflash, btw, they probably won’t and it seriouses-up fast when they don’t).

It may be because in your own temperament, within your person, as a product of your upbringing, in the wake of a lack of hugging, (insert your own reason)… you are simply not a change agent or a fan of change agent type activity.

Doesn’t matter why, to me.

These things just are, and that’s what makes human diversity.

Moreover, in autism there are people who can talk and people who can’t. People who can live independently and people who can’t. People who need regular hospital care and people who don’t. It’s a spectrum disorder.

So the idea that those who need less, actively campaign against those who need more, is not just insane, it’s got a really ugly feel to it.

In other social movements, the stay in the same placers tend to stay in the same place, and the move forwarders tend to move forwards. Makes sense. In autism, the stay in the same placers seem to need to slow down the forward momentum, and I’m buggered if I understand why. Because if you are happy with the status quo, wouldn’t you just um, live it?

We all have different stories that inform our perspectives. It’s hard for all of us.

But some of us aren’t happy with it staying hard, and so we fight for the change we think is necessary. That change is generally the right to chose a more appropriate path, medically and socially, for our kids.

I reached a point where ‘hooray for autism’ was not enough. In fact, it was embarrassing. Actually, it has become something that drives me senselessly around the house looking for sharp objects and something non-living to use them on. But that’s just me.

The point that turned me was my son’s health. It was the frightening co-incidences in diagnoses and conditions among the cohort of autistic kids he has grown with. It was the growing realisation of the medical reality of this condition, despite years of convincing myself otherwise. It was, scariest of all, the startlingly blankly similar reactions in a growing legion of doctors who had no answers for us.

Actually, I lie. They had one answer, ‘It’s just autism.’

I would read stories about really sick kids, from autism parents elsewhere, and I’d think, ‘Wow, that must be awful.’ I’d seen similar patterns of crisis in overseas stories and thought, ‘Gosh, I’m so grateful that’s not what we are dealing with.’ And in the back of my head, I’m thinking, I hope that problem with pooping isn’t more serious than they say… I hope that ‘freak’ auto immune attack that paralysed him wasn’t related to anything else… I hope those staring spells and tremors don’t mean anything.

It was, and it is and they do.

If they (the nagging fears) don’t mean anything bigger for your child (or you don’t have them at all), then I think you are very very fortunate. And I’m very happy for you.

But here’s the important thing.

Your personal experience contributes to the massive growing pool of autism experience. It is not indicative of everyone who shares the experience of autism. The reality of your experience does not negate the integrity or validity of anyone else’s experience.

And yet, by virtue of the diagnosis our children share, we spend a massive amount of time acting as though we share the same experience.

Even more insanely, (and maybe because doing less is generally more attractive than doing more), we use mindless inspirational posters to throw shade over the seriousness of the condition. We place ‘love’ and ‘acceptance’ on one side of the scale and the demand for medical respect for sick children on the other.

So here’s what I’d like to see us talk about in April.

Count your blessings if autism is something to celebrate in your lives.

Then, open your mind to the fact that it shouldn’t be. Stick with this. Listen, even if your guts are churning. You don’t have to change your mind. It’s your mind.

All of us love our children. All of us accept our children. These things are not in question.

Here is what is in question, for me.

Is autism a random act of fate, genetic or otherwise? Or, is it something we all play a role in, like say diabetes, allergies, asthma, cancer? Yup, I went there. Cancer and autism in the same sentence. I question whether our choices, lifestyle, medical advice played a role in causing and exacerbating this condition in our son, and I question whether our societal choices play a role in causing and exacerbating this condition in a generation of kids. I don’t have all the answers, but I gain a lot from the search for them.

Does that make me love and accept my child any less?

I’m actually not going to answer my own stupid question, because it’s so damned ridiculous. What I will happily admit is that I was sucked in mightily by a passive acceptance manifesto for way to long. I promoted the ‘there’s nothing wrong with Billy and everything wrong with the world that judges him’ for a long time. And in that time, my son got sicker and sicker. If you want to follow that journey in painful (and sometimes witty) relief, download it for free here.

But that’s my journey, and everyone’s journey is different.

How is it I can say that, and yet others feel happy telling me my son’s story is (somehow, mysteriously and illogically) a random unfortunate series of events, and I am inventing logical connections because I have Munchausens or some other invented condition and so do all my crazy imaginary friends..?

As April approaches, I am bracing myself for a barrage of nonsense.

I am happy to report that my chosen perspective on autism advocacy is being presented now more than ever before on the information super highway. I am inspired and affirmed by the rigor and passion of the Thinking Mom’s Revolution. I am informed and challenged by Age of Autism. I am calmed and educated by Autism One. If there’s a fence, I choose to stand on their side. Do I agree with everything they say? No. Do I agree with everything anyone says? No. Does it stop me confidently standing on this side? No way.

If you identify on the other side, the ‘I wouldn’t trade my autistic kid for anything’ (whatever that means) side, it’s all good. I know you have a lot on your plate, and it’s not easy, and I’m guessing there’s a lot of comfort and focus in your side (as there is in mine).

Enjoy it.

And then, back off my turf.

It is hard enough to convince the actual doctors we see in our actual days that autism is not a good enough explanation for our son’s medical issues, or that adult doses of medication is not a good enough long term solution. We need change in this realm. If you do not, awesome, it’s no skin off your nose if I fight for it, so leave me to it.

Leave us to it. You have what you need. We are not competing.

It is hard enough to convince teachers and educational administrators that children with autism who are mainstreamed need complex and expensive support in the classroom. There is no other appropriate place for many of these kids, and they have to be in some kind of educational setting because that’s the law. So enjoy the fact that you need less, and support the fight for the kids who need more.

Or, even less confronting, just let the people who have to fight fight, and you do what you do.

The nonsense idea that just because your experience of autism means you see no need for change, then no-one’s experience of autism reflects that need, is just… immature. Politically and socially immature.

There is so much to question, so much to consider, so much to try… so much that can be done.

As much as I’d like to sit back and hum along to Simon & Garfunkel next month, I’ve got work to do.

How’s it working for you…?

In Action, Perceptions on February 11, 2013 at 10:35 am

I keep writing and re-writing this post in an attempt to make sense.

I’m thinking about how to change the world and make real change and fix stuff and protect other kids and families from some of the stuff we have to endure. I’m thinking about pluralism and inclusivity and agitation and policy change… and I keep disappearing around corners and up my own bottom.

So, instead, I’ll keep it short and sweet.

Here’s a list of what I think is holding back the realisation of actual, tangible useful change in the way autism is viewed, treated and understood.

In random order.

– ridiculous passive memes.

– hideous whiny stories about how no-one really gets it.

– the views of the few being touted as the universal truth.

– actively avoiding the acknowledgement of the presence of elephants in the room.

– pathetic mainstream attempts to divide and conquer with diversionary arguments about hot button issues.

– parents confusing acceptance with inertia.

– professionals pushing nonsense barrows to keep themselves in business.

– politicians answering actual thought out questions with irrelevant cut & pasted press releases.

– people who do not research but pretend they have, who are not informed but claim they are.

– people who buy the ‘movement’ and wouldn’t recognise the reality if it crept up and gave them a wedgie.

If I have to accept that I live in a time where real people seriously think that it’s OK to more than double the rate of a lifelong disabling condition in less than a decade, and not care about why or how… then I’ll stop writing sweet little lists and start running for office.

Or running down the street playing paintball with unsuspecting strangers.

One or the other.

Australian radio talks autism…

In Perceptions on January 25, 2013 at 11:36 pm

Australian radio talks autism…

It’s always interesting to see the perspectives that emerge when there’s no event to promote.