Valerie Foley

Posts Tagged ‘Action’


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.

I have no evidence

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

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

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

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

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

You know… ‘autism‘.

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

Are we that stupid/complacent/easy to placate?

It seems we are.

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

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

And here’s why.

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

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

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

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

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

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

Seriously, are we that stupid?

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

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

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

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

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

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

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

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

We’re here and we have cameras…

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

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

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

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

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

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

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

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

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

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

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

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

He is not what he became.

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

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

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

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

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

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

We suspect he is not alone.

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

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

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

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

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

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

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

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

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

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

We are here, and we have cameras.

Who’s Fooling Who?

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

Who’s Fooling Who?

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

It’s April 2

In Action, Diet, Environment, Medical, Parent issues, Perceptions, Research, Supplements, Therapy on April 2, 2013 at 2:15 am

It's April 2

Red for Action.
I’m aware already.

In lieu of absolutely nothing…

In Action on February 4, 2013 at 11:31 am

It saddens me beyond almost anything that autism could easily become an un-solveable issue.

For some in the autism community, the resounding response to that statement would be, hooray. It’s not an issue that needs solving, it’s just something that needs accepting. Open your minds and move on.

For many others, it’s a huge issue and it’s getting huger.

Every day, in my life, there are a series of discussion about school and health and hospitals and doctors and teachers and therapy and medication and side effects and… and… and…

Rest assured, for every study that says (or actually doesn’t say but that was a post last week) kids grow out of autism, there’s scores of children NOT growing out of it, and many many more growing into it.

And we are not doing a damned thing about changing it.

Sure there are parents doing a brilliant job – supporting their kids, fighting for change, provoking thought in a brilliant way. Sure there are professionals doing the best they can with limited resources. Sure, there are autistic folk living the best lives they can some achieving incredible things publicly, some moving mountains that other people don’t even see as they get through their day.


Where are the governments? Where are the policy makers? Where are the industry leaders?

Who is asking why and what and then signing off on following up their answer?

Who is acknowledging that we are not doing enough and committing to do better?

Who is actually actively listening?

Autism is not a choice. It’s not something that anyone assumes. It’s something that is. There’s no flexibility around that. We can’t just stop dealing with it, no matter how much we accept it.

As people who live lives with this disability, we don’t have the choice to disengage financially, practically or emotionally. Whether as a carer or as a person with autism, life IS about the issues. We cannot (and will not) stop dealing with the issues because we can’t. We have to maintain health, try to learn, to get around our cities, try to provide for the future… to live.

So, when pressure comes either from within the factions of the autism community (‘stop talking about autism as a disease, I don’t have a disease‘ or ‘autism is just a natural variant of normal and not something that needs fixing‘) or from outside (‘stop asking why and just accept that it is‘, or ‘you are just angry and want to blame someone‘, or ‘there’s no evidence of what you claim, end of story‘) I sigh… because it changes nothing.

Worse, that pressure is designed to change nothing.

And most families I know, living with autism would say, if we change nothing, we are in a very grave situation indeed.

In Australia right now, we have children being denied medical supplies, being under-educated, being under diagnosed and under serviced. We have people in varying stages of crisis, with no safety net. And there’s lots of them. More and more every day.

Yet, people try to say autism not a problem, that it’s an inflated construct.

Look around you. Go to a school. Talk to a doctor or a nurse. Open your eyes at a zoo or a theme park. Autism is a huge, present, obvious, increasing issue.

If the present is challenging, imagine what the future is going to be like.

The more we normalize this game, the less we support it, financially and politically. It may solve the storm in a tea cup now, but in 40 years time, when my ‘just-slightly-left-of-centre-calm-down-mum’ child has a fatal seizure because his autism means he can’t manage his own epilepsy medication, and there’s zero social service provision for him because autism is NOT an issue… we’ll have a whole new storm on our hands. Or will we…? Do we even care enough?

It seems to me, trudging forward wearing puzzle pieces and lighting things up blue is a colourful diversion from the reality. Sure, some days we need diversions. Why not?

But most days, we need so so so much more.

One in 62.5 school aged children in Australia. From one in 150 not very long ago.

It’s not getting any easier.

I made this petition and someone asked why…

In Action on January 9, 2013 at 4:24 am

Why did I start this petition on

(And yeah, if you want to sign it, I’d be most grateful).

On a personal level, my son is autistic, and he has a range of medical issues.

These include epilepsy, an auto-immune disorder (Transverse Myelitis), chronic gastro-intestinal disorders (constipation/reflux/encopresis), cochlear dehiscence, anxiety and OCD.

Among our peer group of families living with autism, the child without medical challenges is now the exception, and we are not a specifically ‘medical’ cohort.

As an autism parent, the phrase I hear repeatedly from doctors is, ‘It’s just autism, Mum’.

It makes some sense. There is definitely a range of medical issues that can statistically occur in people with autism – GI, epilepsy and anxiety/depression are named most commonly.[1]

However, the ‘it’s just autism’ mindset leads to a very limited set of strategies when it comes to managing, treating or investigating the medical status of an autistic child. ie. Don’t question it, medicate it, live with it.

Beyond the fact that it just seems wrong, as a parent, to medicate your young child for constipation as though they were an 80 year old (for example), a broader question remains.


  • Why do autistic people have gut issues?
  • Why do autistic people commonly live with epilepsy?
  • Why are metabolic syndromes and mitochondrial disease present in some people with autism, why are the hallmarks of these conditions (not enough for a full diagnosis) present in many others with autism, and why are these discoveries becoming more common?
  • Why do autistic people have more auto-immune and inflammatory responses than the non autistic population?
  • Why are young people with autism finding themselves mental health crises so easily?
  • What are we missing (or ignoring) about this condition?

On a societal level, autism is now the fastest growing developmental diagnosis[2].

From 1 in 10 000 to 1 in 88 in 20 years.

Even with a genetic component, even with changes to the DSM which included Aspergers in 1994, even with an oft quoted (though not reflected in many people’s real life experience) increase in the diagnostic skills of doctors, this rate is alarming.

It is real, and when you live it, it is frightening, because no-one knows how to manage it.

Autism is a behavioural diagnosis made under the DSM. The behavioural component of autism management is only one of the issues for families living with autism, and it’s not one that exists in isolation. Behaviour doesn’t come from nowhere. Autistic kids don’t learn it, they live it.

The medical reality for most families living with autism is complex, largely not understood and principally left up to individual parents to investigate and manage. It is a huge responsibility, requiring terrifying decision making on an hourly basis and truly challenging day to day lives.

As an added bonus, the medical fraternity look on these parents with derision (for the most part), quoting their chosen evidence as the reason. The suspicion that there’s some hidden agenda in the activities of pro-active parents is ever-present, when the reality for most is a life of pure desperation.

Like in any disability, there’s plenty done about autism awareness and acceptance.

These (very legit) campaigns about embracing difference and accepting quirks, are, to a simplistic society, also diluting a very important question.


  • Why is this happening?
  • Why the acceleration?
  • Why the medical complexity?
  • Are we causing it somehow?
  • Are we aggravating the condition in some way?
  • Can we slow it down?
  • Can we reduce the occurrence?
  • Why are we intent on questioning the credibility of medical practitioners and parents who pose questions like these?


  • Is it a legitimate hypothesis to say the best way to treat autism is to ‘teach’ autistic children to be normal?
  • Is there a biological basis to the behaviours we associate with autism, and if so, should we be addressing them medically?
  • Should there be an imperative to improve the health of children living with autism (children generally, even), and if so, is ignoring the therapeutic possibilities of diet/supplementation a sensible medical directive to give to parents?
  • On that, is the common use of anti-psychotics and stimulants a reasonable strategy when the medical basis of the condition is not yet understood?

In my opinion, we are currently playing an odd game as a society when it comes to autism.

We accept that we don’t know enough, and yet we get all Salem Witch Trial when it comes to the folk who ask questions – as though the questioning process is the problem.

We see our schools filling with children with complex additional needs, and we respond to these needs by questioning the credibility of parents and carers – as though the parents are somehow causing the problem.

We happily acknowledge the warm and fuzzy differences in autistic people, and yet we have no accepted strategies on how the condition mandates they should be treated medically.

We hide behind astutely passive statements about inclusion and acceptance, and use them to justify ignoring an accelerating epidemic among children.

It’s not good enough. Not on a human level, not on a social level, and definitely not on a political level.

If autism was polio, we’d be all over slowing it down. If autism was diabetes, we’d have media campaigns about slowing it down.

There is research, there is mounting evidence, there is rigorous thought about autism as a medical condition. The US Congress are accepting it[3], we should too.

As the parent of one child in need, and the observer of so many more, it seems absolutely crazy to me that we are passively standing by and accepting the inevitability of a future full of potentially avoidable childhood disease and disability.

[1] Apologies for footnoting Wikipedia, but the links off their article are great.

[2] Apologies for footnoting Autism Speaks, but they do stats for the uninitiated well.

1 in 88 – US Congress House Oversight Committee

In Action, Medical, Research on December 31, 2012 at 9:28 am

1 in 88 – US Congress House Oversight Committee

Watch this, if you haven’t already, to see the where the debate is going in the USA.