Valerie Foley

Posts Tagged ‘doctors’

One Day on Mars…

In Environment, Medical, Research on August 2, 2013 at 11:10 pm

This article was originally published in the August 2013 issue of Autism World Magazine.

One day, the medical profession will look back, from their shiny, flying car, teleporting Martian colony. They will look back at our degraded blue planet and they will see how badly they messed up in regard to autism in the early 21st century.

While they are comparing spacesuits and patting each other on the back about their forebears’ approach to dementia and diabetes and cancer, they will see the disservice they did to our children. They will see it, because they won’t be able to avoid it. It will be as in their faces then, as it is in ours now.

Our children, who are currently struggling to cope with being children, will be adults struggling to be adults.

While a fortunate few of their number may be innovators in useful fields, many may not. Lacking the requisite normalised life skills, their additional needs will be painfully apparent.

This will likely happen for three early 21st century reasons – all solve-able, all addressable, all confronting (and therefore unsolved and unaddressed).

One.

The general population have been convinced to tip toe around adults living with autism. This tip toeing means no-one is permitted to say anything negative about autism, (except the odd anointed adult). We can’t say it’s a medical condition because sickness is a deficit. We can’t say it’s not OK for children to be permanently and unnecessarily disabled because that would be insensitive. So instead we say it’s a gift, a different not less-ism, at very worst a ‘challenge.’ People’s lips go to string when we say the word ‘disability.’

It is almost impossible to rally the forces of medicine and politics when the verbal face of the disorder is frantically yelling that the sky is not falling, they rather like the way it is burning the tips of their ears.

Two.

Doctors know a grand total of next to nothing about a disorder taking over the lives of 2% of the population. They have somehow decided that dysfunctional and atypical behaviour just happens – that there is no medical basis to something that stops children from talking, eating and sleeping. They seem agreed that completely disrupted gastrointestinal systems, immune conditions and seizures are nothing to raise flags about. There is little incentive for them to find out more because to do so would be to turn their very world on it’s head and spin it so fast the people would fall out.

It is impossible to arrest the development of a behavioural disorder of no known cause. So, we don’t. Instead, we recommend training kids not to behave ‘badly.’ Just like we would if they had the flu. Or not.

Three.

We have normalised the common, and lost touch with the typical. Autism is common – therefore it is normal. We have done this about more than autism. We think pop tarts are food. We think multi-nationals have our backs. We believe chemicals are better than weeds in our gardens.

So, we sit politely and allow doctors to tell us we should accept that every second child is speech delayed, has trouble making friends, screams blue murder because of the tags in their clothes or seams in their socks. We do more than accept their word, though, we then minimise it with platitudes about acceptance.

And by minimising it, we condone it in more and more and more children. Why not? It’s common.

But here’s the thing.

The doctors are trained to fix things. If we tell them we believe our children don’t need fixing, then guess what? They go fix the diabetics instead. They have strategies for that – diet, lifestyle, supplements, medication and ongoing rigorous roll of research aimed at understanding and preventing diabetes.

The kind of things autism needs to explore.

Resources are limited. There’s currently little money in autism prevention (given that you can’t patent a supplement and all those amphetamines and SSRIs won’t sell themselves)  – though all of that’s likely to change as the education/healthcare/welfare/housing systems start realising what’s heading their way.

There are only a few medical research facilities around the world that genuinely investigate autism as a medical condition and demand light be shed on child health policy; that listen to the life stories of autistic people and their carers.

Yet, there are educated and committed families everywhere yelling those same stories to deaf ears.

If we lived by the platitudes we throw around on social media, we would all agree that we would rather children weren’t disabled. No-one gets likes on Facebook by saying, ‘Spina bifida is awesome! Chill out on those pre-natal vitamins.’

We need the medical profession onside, and normalising a growing, debilitating, complexifying disorder won’t do that.

More children are disabled. More children are sick. More children are dying. A small number are coping, clearly buoyed by the power of blue light and rainbow puzzle pieces.

Doctors have nothing. Teachers are overwhelmed. Politicians have no imperative to magically multiply already stretched resources.

Yet, we have allowed ourselves to be convinced ‘autism’ is more important that people. We have prioritised the status of a concept, and the esteem of adults who live with it, over the health of actual people.

Give me a break: Give children a break.

Accept that if we can avoid autism, we should avoid autism. Just like we do with diabetes or dementia, where adults with the condition have the open-heartedness to admit it’s something worth avoiding if you can.

Wouldn’t it be nice if the air-locked schools and hospitals in the shiny new Mars colony weren’t still arguing about autism?

Wouldn’t it be nice if the future money could be spent on supporting clean living and healthy families.

Wouldn’t it be nice if children weren’t being left behind in that shiny utopia because their needs are minimised, confused or misunderstood?

Actually, wouldn’t it be nice if that was happening now?

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All these canaries are so lovely…

In Environment, Medical, Perceptions, Research on August 1, 2013 at 5:41 am

Today we spent the morning with a geneticist at a major children’s hospital.

She was lovely, especially to Billy. She asked a lot of questions, wrote a lot of stuff down, listened very carefully, took a lot of photos and measurements and was intensely respectful.

She noted his hypermobility, his dysmorphic features, his medical diagnoses and reactions to medications and interventions. She heard it all, saw it all, acknowledged it all, even restrained herself from slagging off our dietary/lifestyle interventions.

All good.

The wrap up?

There’s no doubt in the world Billy is different from a typically developing child of his age. There’s no doubt he’s different to other kids with autism too. There’s no chance in 2013 that we can understand why.

She suggested a pencil grip (yeah, really), some core strength building activity (because seven years of OT has clearly been intensely useful) and a sense of gratitude that he’s not worse.

I made a few attempts to get her to understand that ‘hooray, he can talk’ isn’t going to help him get a job when he’s 18. I tried to light a little ‘this really isn’t right’ fire under her. She took it with more grace than most stethoscope wielders.

Does the last two hours mean anything? Change anything? Help anything?

Nope.

Don’t get me I’m exceptionally thrilled that there’s no obvious genetic syndrome screaming out for attention. I’m very grateful for that fact. It was unlikely that his ‘autism’ had a genetic cause, though the addition of hypermobility, auto-immune disease, GI issues and epilepsy makes a genetic cause slightly more likely. Hence the box ticking appointment.

The question remains, if we rule out genetics, WTF is going on? Chance? Bad luck? Or some deliberate choices we and others made on his behalf that kicked this game of Mousetrap into action?

The blank wall of ‘we don’t know’ is a way too familiar medical view in our lives.

We’re running out of ‘WEs’ to talk to, and there are two reasons why that’s both depressing and frightening.

The first is that the list of ailments in our kid grows, not shrinks, with time.
From hyperacusis, to hypermobility to GI issues to transverse myelitis to epilepsy. No-one medical knows why (bar the fact that some people who share an ‘autism’ dx have some of these things). No-one medical has non-pharmaceutical treatments or treatments that actually heal (rather than mask). No-one knows if anything else is coming. And yet, the impairment in him increases, against all spin- sorry, ‘odds’. The gap between him and his peers widens, and we see clearly he is not alone.

The second is that we live in a medical and political world that has been convinced autism is not a medical condition, with associated causations and solutions.
They have chosen to work on the notion that autism is either (a) severe or (b) magically overcomeable with behavioural training. The wave of autistic kids born in the 2000s kids are heading for adolescence and it’s not gone. The way smaller cohort of 90s births are aging out of school and guess what? It’s not gone. The later in life diagnoses, who managed to get through things that most kids with autism now have no chance of getting through are happily telling us all we should accept autism and leave our kids be. Which would be awesome, if leaving my kid be wouldn’t result in him walking in front of a car, ceasing all defecating activity and wondering what the hell happened to all the food.

Billy is currently a child with a serious disability. On paper, he is nothing of the kind.
‘High-functioning’ autism is not highly rated in the world of disability. He can talk. He is mobile. He has a level of emotional regulation. He’s not violent to himself or others.

He’ll grow up, dodging what ever medical conditions may be ‘lurking in there waiting to come out’ (the words of his neurologist), into a world that thinks he’s just fine thanks very much. He does not qualify for support, he does not have ‘high needs’, he’s just ‘different, not less’.

While we have a medical fraternity that thinks it’s OK to say ‘we don’t know why’, we have politicians who say ‘we don’t need to know why’ and we have a world that says ‘we don’t care why’.

It won’t (I fervently hope) surprise anyone that when it is your child this is happening to, you do not think it’s good enough.

He’s not bleeding from an artery. He doesn’t have cancer. He’s not strapped to a chair. We are incredibly fortunate we do not have to deal with these things currently, as many families do.

What he is, though, is one of almost 3% of our current child population in Australia (and climbing, and it’s no different anywhere else).

What he is, is mysteriously disabled (unlikely genetic, possibly environmentally, possibly preventably, possibly treatably).

What he is, is the canary in the coalmine.

And I adore the canary.

The coalmine… not so much.

The ones who dug the coalmine…? Who manage the coalmine…? Who spin shit about the state of the coalmine…?

They’re the ones I’d like ten minutes with.

They’re the ones who have a responsibility to care about the ‘why’, before there are so many canaries flapping their pretty feathers in their faces,  they’ll have no choice.

They’d tell me, right?

In Medical, Parent issues on June 28, 2013 at 2:07 pm

We spend a lot of time at the hospital.

Sometimes we’re chronic, and sometimes we’re critical. Today, we were curious.  We spent an hour with a truly charming neuro-immunologist having one of the most depressing conversations I may have ever had.

I was hoping to be wowed by doctor magic. I really need to stop believing in doctor magic.

Billy’s first diagnosis was PDD-NOS, then Transverse Myelitis. Then came the GI issues. Then the full ASD. Then the epilepsy. His energy is depleted. His motor skills are impaired. The world takes a toll on him.

We’ve had a neurologist for the longest time, and today we got to meet the next line of defence – the neuro-immunologist. We wanted to know if we should be standing by for any new diagnoses.We’re starting to feel pretty unlucky.

The doctor listened carefully to everything we had to say, sympathised with the dilemma of the autism parent in the medical system and told us he had no idea why Billy has so many suckful medical conditions.

He said can see there’s something, and he suspects it has something to do with his immune system (and less to do with his mitochondria or his metabolism). He says genetics need a good going over. But he was very clear that we are in the realm of real but currently unquantifiable, medically. At least in this country.

Now, why am I telling this story? Apart from giving my fingers something to do in between the disappointed wine drinking?

Well, it’s a rare day that goes by when another autism parent doesn’t say to me… ‘well, if the doctors were worried about something to do with my child’s health, they’d tell me.’

I’m here to tell you, people, they wouldn’t.

Why? Because they genuinely do not know.

I think some of them genuinely want to know, but the momentum is simply not there to find out more.

We are also seeing, that when individual doctors do learn, they think long and hard about sharing their knowledge, because it is the sort of information that will shake up the public health landscape around the world in a gigantic way. And it’s a rare doctor that is confident about doing that.

The information required is the sort of stuff that makes people need to change their lifestyles, make decisions that make them stick out from the crowd, protect their kids from ‘normal’ life. Normal people. Run of the mill, everyday folk, changing their lives to keep their kids functioning.

But it’s not just the doctors.  There’s also the issue that corporate (governmental) knowledge of autism is lagging years behind the lived experience. This wouldn’t necessarily be a problem, if autism was universally the quirky talks-too-much-about-Star-Wars thing that we are led to believe it is. It wouldn’t be a problem if the bureaucrats didn’t need to believe that autism needed no more than some EI and the odd social skills group.

They not only have to learn what autism really is, they need to be willing to change the entire system to accommodate this new reality. No wonder it’s not happening.

Sitting in the presence of skilled and sensitive doctors who say, ‘I can see what you see, and I don’t know what it is’ is my least favourite parental job. I don’t want to hear that the biggest children’s hospital in the country are flummoxed by my son’s health. I also don’t need to be placated by statements like, ‘But autism wise, he’s pretty good.’

I am not the only person I know in this oddly comfortable leaky boat.

My co-floaters have beautiful teens in profound mental health crisis, tweens with degenerative movement disorders, primary schoolers with mito and pre-schoolers in psych lockdown.

‘Boy, I’m glad that’s not us’, I hear you say, ‘my kid just has autism.’

My kid just had autism too. So did the teen and the tween and the primary schooler and the baby. Autism is no more than a word (and that’s from the mouth of the neuro-immunologist). It’s a name we give to a set of symptoms that are evidence of something not doing what it was built to do. And that something is what we really really need the doctors and bureaucrats to understand – the somethings that have become frighteningly common but are not normal.

And, don’t be afraid of the word ‘normal’ for heavens sake.

Normal to me, previous to this medical adventure, was not fearing for my child’s future. Normal was bringing up my son to achieve his goals and find inner peace.

Now, it’s the fervent wish we won’t wake up in a pool of urine, or don’t have to spend our sleeping hours ensuring our son is safe in the recovery position while seizing uncontrollably. It’s accepting that a good day has to include medication, and supplements and vigilance about food that would put a TV chef to shame.

It would be awesome if the doctors caught up, in all honesty. We could do with the back up. We are just keeping afloat here, and the flares we are sending up are seen but not understood.

We can’t sit back and think it will be OK. We can’t write ourselves out of this narrative. It is what it is.

I’d love to think that autism parents who don’t feel like they live in this leaky boat would find the space to stand up and fight for change. At the very least, I’d hope they wouldn’t fight against us.

Billy is our everything, and he is the most important thing ever, but on days like today, it (not him, it) is the opposite of fun. Literally, diametrically opposed to fun.

On days like today, I realise that love is quite literally the sea keeping this boat bobbing up and down. All the reading, all the studies, all the therapy… dissolves into nothing.

And we go back to scratch. Focus on Billy. On health. On happiness.

So, yeah… Today I learned, that unless you ask, they won’t tell you anything.

And if you do ask, you might come away wanting.

We have a long, long, long way to go.

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.