Valerie Foley

Archive for August, 2013|Monthly archive page

What if?

In Diet, Medical, Perceptions on August 22, 2013 at 3:18 am

The platitudes and polarities in autism world make living here a notch more challenging than it needs to be.

I have enough perspective to accept that other people can and will do whatever they please with their version of autism. I’m certain it won’t be what I would do, but I’m also certain that they, as I, have a bunch to learn from the experiences and choices of others.

Hence the torture I put myself through on a daily basis – reading about autism on the internet.

I hit a wall this morning when the comedian called ‘God‘ on Facebook posted a syrupy sweet (disappointingly unfunny) hooray for autism post. You may have to ‘like’ God to view. Generally, I find him pretty funny. Today, I did not.

Today, I felt stabby.

My son is a lovely boy, no doubt. He’s gorgeous and loving and great at some stuff. Do I believe autism made him any of these things? No. No I do not. No more than epilepsy does, at least.

Do I think autism is a repository for ‘awesome talents’? No. Nor is auto-immune disease.

Do I think we are doing anyone any favours by perpetuating this ‘love your captor’ nonsense? Well, only if we are confident that the world will somehow find billions of dollars to support millions of people like my son, from birth through adulthood.

This week, autism has delivered my son and his peers the following (feel free to sing along, Twelve Days of Christmas style):
– a literal shit storm,
– a paper war designed to save a 10 year old from suicide,
– a psych lockdown for a 7 year old,
– a Webster pack of medication for a 15 year old that would put a cancer patient to shame and
– a grown up wheelchair for a 9 year old who no longer fits his therapeutic stroller.

The combination of these events, and God’s blue flaming made me think… there must be some better ways to think about autism.

Here’s a few random what ifs (I’m sure we could all add a pile if we had an Edward de Bono style strategic planning love-in).

 – What if the socially-awkward-genius autism and the can’t-control-your-adult-bowel autism are completely different things?
How would making that definition change the way we approach the diagnosis and treatment of one or the other? How would it serve the medical integrity of the condition? How much could we learn about the whole spectrum if one end wasn’t constantly white-anting the other?

 – What if we could get over the knee jerking and finger pointing around vaccination and actually had a good scientific (not epidemiological)  look at whether it is involved in autism.
No, it hasn’t happened/been proven/been disproven. No, they are not tested in combination. And No, a comparison of vaccinated Vs unvaccinated autism rates has never been done. What if we did those things? What might we learn? What might change if we knew more about the subtleties of the choices we are expected to make?

 – What if we asked GPs and paediatricians to consider actively educating themselves on the basis and treatment of the medical challenges autism brings?
Would it change the advice they gave parents? Would it change the nature of Early ‘Intervention’? Would it change the health outcomes of people with autism, who are among the most highly medicated and chronically ill in our communities?

– What if we all held hands and sang ‘Kumbaya‘?
Or another lovely but non denominational song, just in case someone is offended by that choice.

It couldn’t hurt, right.

Well, maybe listening to a worldwide chorus of Peter, Paul and Mary could be a little painful.

Let me think some more on that last one.

Why?

In Action, Parent issues, Research on August 15, 2013 at 6:13 am

Some days, being an autism parent is like living in a hall of mirrors.

On the one hand, there’s the simple fact that your child is disabled. It’s really very simple, as a fact. Hilariously, despite the very apparent presence of disability, many people genuinely try to convince you it’s not disability after all, but some fluffy gift from the benevolent gods of quirk.

On another hand, there’s the future. It’s an oddly cloudy mix of maybes and pleases and probablys and of courses. It’s slammed in front of you all the time – when policies change, when friends celebrate life transitions, when family do what family do, when a child somewhere perishes in the face of life pressures they don’t understand… because they have a disability, or a gift (whichever).

In another hand (we are in a hall of mirrors after all), there’s the ever present question ‘why?’

There isn’t much in life that so confrontingly mixes viscera and emotion like childbirth. Maybe death. Maybe the odd violent hangover where the responsibility for your actions burns as you hurl it into a suitable receptacle.

Parenting is highly emotional and highly practical at the same time. The whole experience is based on hopes and promises, even though the practice is all about ancient wisdom and established routine. There are no guarantees, that’s for sure. You get what you get, no matter how consciously you sign up.

But there are lots of days where I wonder why so many people got autism. What did we do, individually and collectively, to bring on a wave of autism diagnoses?

Yesterday, I listened to a woman on the radio talk about the rise of type 1 diabetes among children in Australia. She said the trends and the analysis of those trends makes it abundantly clear that we (humans generally) are causing this – that a combination of genetic factors are combining with environmental and social factors resulting in the medical condition we call diabetes increasing in children.

And as I was listening, I kept on thinking, why can’t we acknowledge this about autism?

Why is our current autism research (especially in Australia) not focusing anywhere close to this?

Instead, we seem hell bent on pretending it’s either not happening, it’s the trendy choice of over-protective and under-realistic parents or it’s a random fall of some dice that none of us knew we were throwing?

As a parent, as a person who had the great privilege of meeting someone lovely and making a conscious decision to bring another human being into the world, just as a human being… I really want someone to stand up and seriously look at why my child is autistic.

I’m willing to help find an answer. I’ve been working my ring off up until now, with limited success, so I’m thinking smarter heads could prevail.

It’s not identifiably genetic, in our case. The geneticists are very clear on that.

It is heavily medical, in our case. Our bank account will attest to that.

It’s unlikely to be a gypsy curse, as I am not a gypsy, haven’t had my fortune told and have never owned a black cat.

So, why?

What did I do, in my life?

What did we do?

What did people around us do to contribute?

What did my mother, her mother, my father, his father do?

What could we all have done differently in order to avoid an eventual diagnosis of autism in my son?

It’s a fair question. It’s a fair set of questions. And in my mind, until we all start to answer them, we are never going to make any progress in preventing autism.

It starts with us.

We need the doctors, or the politicians and the academics. But it starts with us. Without acknowledging our responsibility, without understanding our responsibility, it’s almost impossible to know where to go next.

I’m not talking about feeling guilty or blaming ourselves, I’m talking about doing what you would do in any situation where something has gone wrong. And yes, FWIW, I believe having a child with a disability isn’t an ideal outcome. It’s one I accept with everything I have, but not one I would choose if choice were possible.

I’m talking about sharing experiences, asking questions, and expecting reliable advice to find answers.

Every day, ten new studies are publicised that shine a light into some corner of life that may be relevant to autism causation – maternal antibodies, thyroids, epigenetics, vaccines, nutrition, pollution.

Every day, people who do not believe those studies reflect their experience or view of the world, deny the relevance of those studies. Then every next day, people turn on each other, claiming their ideas are bogus and they are variously uneducated, blind to reality, hoodwinked, brainwashed, dangerous (insert your own thoughts).

And in the middle of it all, are our kids. Once well, now not. Treasured and valued. Inexplicably disabled.

Can there ever be a point where this generation of autistic kids cease being a political, ideological, intellectual, virtual football?

Do we even want to fix this?

I do.

I do, because it’s not a theory for us, it’s a stark scary reality. I do, because my son’s prognosis is not getting better, it’s getting worse. I do because parenting is a big enough job for anyone, without adding a giant hulking ‘stand by for repeated surprise smacks on the metaphorical head’ to the list of jobs.

I hope there will be a time soon where I can play an active part in de-footballing my son, and many kids like him. I hope in the process of doing that, I can protect future kids from being unnecessarily disabled. I hope that when I do advocates for disability rights and public health and nutrition can put their own agendas aside and listen.

Just listen.

This happened to us. It happened to lots of people we know. We don’t know why it happened.

We have no reason to make up lies. We have every reason to want to know more about what happened. We have every reason to want to know how to make it better. We should care about preventing it happening to other people.

We are at a point in history where the provision of autism related services and the positive portrayal of autism have been promoted as the most important autism related issues. While there’s no doubt those things are crucial to people living with a current diagnosis, it is bizarre to me that they have been actively used to obscure the process of understanding what autism actually is.

We have put the cart so carefully in front of the horse, that it’s hard for the casual observer to know there is, in fact, a horse.

It’s bizarre to me that we are not collecting data from families of currently diagnosed children about their life choices, their families, their medical history. Worse, we are not listening when people try to articulate their experience. Instead, we are telling families that what they think happened, did not (could not) happen.

There are other points in history when similar things have happened in relation to the health of children. To be fair, when a lot is at stake, it probably makes sense to turn a blind eye. An open, analytical, intelligent and compassionate eye would see way too much.

In my mind, we are letting our kids down. We are letting ourselves down. It might be hard to face whatever reality we uncover in terms of autism causation, but where we are now is no bowl of cherries either.

We’ve done awareness. We’re doing acceptance.

Now, let’s do why.

So the next generation can leave the horse and cart behind and get around in one of those flying cars The Jetson’s had.

____________

If you are willing to tell your story to Australian politicians (in person, on video or in writing), PM me at Information About Autism on Facebook and I’ll send you some options. We’ll collect people’s stories and present them after the election. All stories welcome, international perspectives carry a lot of weight at this end of the world.

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?

If you would like to purchase Autism World Magazine, subscribe to the digital download via this page http://www.autismoz.com/purchase-2/ or if you have an iPad download the free app then purchase/subscribe from within the app.

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.