Valerie Foley

Archive for April, 2013|Monthly archive page

Brain connectivity and autism

In Medical, Research on April 23, 2013 at 9:18 am

Brain connectivity and autism

Click the link above to descend into the world of competing theories about brain connectivity and its relationship to autism.

It pains me to say that a page like this does for me what a couple of hours reading Perez Hilton used to do.

I am entirely unsure whether that’s a positive change or not.

Emotion, the enemy of nothing…

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

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

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

Let’s pull it apart a little.

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

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

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

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

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

We are parents (genuinely emotional job).

Our children are struggling (stimulates the odd emotion).

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Here’s the thing.

Do nothing, is a deliberate social choice.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I have no evidence

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

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

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

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

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

You know… ‘autism‘.

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

Are we that stupid/complacent/easy to placate?

It seems we are.

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

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

And here’s why.

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

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

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

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

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

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

Seriously, are we that stupid?

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

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

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

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

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

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

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

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

We’re here and we have cameras…

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

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

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

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

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

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

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

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

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

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

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

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

He is not what he became.

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

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

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

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

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

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

We suspect he is not alone.

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

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

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

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

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

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

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

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

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

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

We are here, and we have cameras.

Who’s Fooling Who?

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

Who’s Fooling Who?

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

It’s April 2

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

It's April 2

Red for Action.
I’m aware already.