Tuesday, 12 February 2019

Autism &The Nemechek Protocol

There aren't many truisms in life, so when one comes along that holds its water, it's worth remembering it, pinning it on your fridge, or maybe tattooing it to the inside of your eyelids.

For example, it's true that the world is round.
It's a scientific fact (borne out of rigorous trials and data analysis) that we will not plunge into a cosmic abyss if we travel south of Ardee.  Even if we disregard trigonometry, physics and space travel, and insist that our planet is flatter than a Spice Girls reunion tour, there is no petrifying ledge to peer over, more's the pity; we can happily walk in tail-chasing circles our entire lives without experiencing a free-fall where we might actually explore our own depths and evolve into stronger people.
But the earth is rounder than Kim Kardashian's terrifying butt, and no amount of dogged denial can make this untrue.

It's an irrefutable truth that the 80s are better left to quietly die in solitary confinement, after their arrest by the fashion police a few decades ago; yet they're sneaking back into the high street disguised as peach coloured pleated skirts and cropped jeans (excuse me, I appear to be vomiting).  This is massively successful if you want to look short and fat with the complexion of a week old corpse.... and if you'd prefer to look more prison-guard than princess, go right ahead, spring the 80s out of jail and knock yourself out with boxy jackets and tapered trousers.  The terrible truth will come back to haunt you in twenty years time when you browse through old photos, realise that the 80s were a fashion travesty first time around, and quite rightly die of mortification for flirting with it again.
Shame on you.

But truer than either of these unassailable kernels of fact, is the stark certainty that autism can't be cured.  This is truer than a papercut being one of the most unbearable agonies known to humans (although labour hurts a bit too), and as undeniable as ironing being proof that Satan exists and lives in my hot press.
If you ever pick up a book with the words 'autism' and 'cure' in the same sentence, it should only be to burn it, use it as a doorstop or to re-purpose it as a missile against anti-vaxxers.  If it also contains the word 'miracle',  you have a duty of care to take careful aim at it with a rocket launcher, atomise it and spread it's ashes to the four winds.
There are no cures for Autism.
There are no miracle cures for Autism.
But there are rocket launchers.... and it would be nice to see them put to productive use.

Target practice

Enter The Nemchek Protocol.
The Nemechek Protocol (devised by a husband and wife team of doctors) don't beat around the bush when they say that they can reverse autism. They claim that Autism is a 'brain-gut-autonomic nervous system' disorder triggered by (deep breath) bacterial overgrowth, chemical toxicity, metabolic inflammation, dysfunctional white blood cells, cumulative brain injury, autonomic nervous system dysfunction and nutritional imbalances.
How they reached these conclusions isn't clear, but they promote a combination of the following weapons of choice to reverse Autism; a prebiotic fibre called inulin, extra virgin olive oil, omega 3 fatty acids and an antibiotic called Rifaximin, as well as bioelectric transcutaneous stimulation of the vagus nerve.
According to glowing anecdotes, this protocol has allowed the mute to speak and the withdrawn to socialise.  They haven't gone quite as far as claiming to raise the dead, but they do profess to also cure chronic fatigue, headaches, dizziness, heartburn, chronic hunger, ADHD and OCD.

If testimonials are your funky thing, you can party all night on the bump and grind pumped out by this site; testimonials can be plucked out of the internet like ripe apples off a tree, but as ever, they are no replacement for solid research.
I was unable to find any credible research to support the use of this protocol to treat Autism, and no evidence to support it's claim that it can reverse Autism.
They came to the attention of the FDA (Food & Drugs Administration) who found that they failed to comply with regulations governing the proper conduct of clinical trials.  The FDA is very clear in it's position that there is no cure for Autism, and that anything alluding to produce a cure is a lie; they advise people to be aware of products that claim to cure a wide range of conditions, anything that promises a quick fix, using personal testimonials instead of research, and anything claiming to be "miracle" cure or a scientific breakthrough. 
The Nemechek Protocol treats these cautions like a target instead of a set of warnings.

Reversing Autism isn't like backing a car into a tricky parking spot;  it can't be undone with kitchen condiments and adding a bit of fibre to your diet.
It's a complex disorder that can be managed with education, proven therapies and plenty of love, and a few fish oil tablets isn't going to change that.

Thursday, 7 February 2019

Autism & Brain Balance

Achieving balance has been a core goal of humanity since time began.

Our bodies are in a constant state of flux as we attempt to maintain internal homeostasis (sometimes by eating a healthy diet and exercising.... and sometimes by peeing out last night's ill-advised third glass of Rioja).
Our kidneys are the main circus masters in orchestrating our physiological balancing act, and I really like to make mine earn their money by occasionally replacing most of my blood with a nice wheat beer, mixed up with a generous handful of luminous blue M&Ms for good measure.
Working on the principle that adversity can tease out the best in us, I have the most robustly functioning kidneys in the country.

Cultures and religions aim to reach spiritual harmony by equalising dark and light, chaos and order, good and evil.  It's a human struggle dramatised in every story from Greek mythology to My Little Pony (My Little Pony is dark).
Achieving balance is devilishly elusive for most of us mere mortals (with the exception maybe of a few extra-chill dudes hanging out in the Himalayas), but it's something we're programmed to strive for.

"We're screaming on the inside"

We attempt to reach a work/play balance by working five days a week, and spending the remaining two in a state of debauched semi-consciousness.
Nature itself is locked in a delicate dance of equalising environmental conditions to maximise the wellbeing of our planet, and everything that lives on it.

Striking the level sweet spot physically, socially and psychologically is our jam.

It's little wonder, really, that any therapy promising to make a level playing field out of our chaotic lives snags our attention, and sells us the hope that one day we could join the ranks of ordered civilisation.  But promises like this tend to set more alarm bells than joy bells ringing in me.
A rule of thumb; if it looks too good, and it sounds too good.... it's probably an autism "therapy".

I'm pretty sure if I ever approach anything resembling balance, though,  that my innards will explode and I'll die of confusion.   My default position seems to be anxious, bordering on neurotic, so anything approaching normality would pose a very real threat of blowing the last few functioning circuits I have.  I'm not convinced that 'normality' is the safest road to live on, or if it even exists.

That said, when you live with an autistic child, there are moments when you feel that it'd be kinda nice if you got more than three hours of unbroken sleep a night, or if you didn't have to script chunks of his favourite cartoon (in German) to calm him down.
A multi-lingual insomniac does not a good parent make.

So when I stumbled across Brain Balance as an autism therapy, it caught my eye; a title that not-accidentally uses the words 'balance' (what autism parent doesn't want a bit of that?) and 'brain', (which lends a sense of sciency intelligence) is designed to appeal to parents whose lives are a struggle of unpredictable chaos.
A slice of brainy peace would go down very well in our lives.

Brain Balance (developed by Dr Robert Melillo) promotes combining the disciplines of sensory-motor skills, academic exercises and nutritional changes to correct a child's developmental deficits (caused by imbalances between the brain's hemispheres).
It promises to help not only autistic kids, but also those with ADHD, Dyslexia, those with social and behavioural issues, as well as those with sensory integration issues.  It promotes itself as a drug-free, non-medical therapy which is not shy about including statements like 'autism can become a thing of the past' in its sales pitch.
It's easy to see how parents can be attracted by the promise that the brain can be changed (and therefore fixed) by implementing a set of tangible exercises and rules; the urge for parents to "do" something to help their child is a powerful one.

Brain Balance is a hugely successful franchise (if you count success in fiscal overturn and the volume of kids shunting through it's six month programme).  The families of 25,000 kids have spent typically $10,000 to complete the  programme, turning over an annual revenue of about 50 million dollars.
That's a lot of money, and a lot of children, but is there any evidence that it works?  Afterall, there are more important measures of success than healthy accounts.

First up, Melillo has a doctorate in chiropractic, and not in conventional medicine.   His qualifications seem to have been awarded from unaccredited institutions, some of which no longer exist.
I might as well award myself a degree in Being Fabulous (with a post grad diploma in Having Well Behaved Hair) from the University of Shit Hot Mommas, and then tell people this qualifies me to have a play with the plasticity of your kids brains.
It goes without saying, that a doctorate in chiropractic does not equal a neurologist, no matter how lovely your hair is. 

In reality, despite glowing testimonials, there is very little evidence that Brain Balance is an effective therapy.  A dozen experts in Autism and ADHD argue that the notion of 'imbalanced hemispheres' is too simplistic to explain complex disorders, and there is no solid evidence to support dietary exclusion as a therapy.

A small handful of scientific papers exist supporting the use of Brain Balance (one of which was co authored by Melillo who obviously has a vested interest in producing positive data); but critics have found serious shortcomings in these. One paper which positively reviews Brain Balance was published in an obscure journal, was penned mostly by chiropractors (with one MD), had no control group and only looked at one aspect of the therapy.... in other words it has all the reliability of a fox in a chicken coop.
There is no biological basis to support the idea that 'imbalances' in the brain cause autism; nothing can be measured or scanned to corroborate this.  There are no credible pieces of research proving that this therapy has a positive effect on autism.
Testimonials carry no weight, and could all have been written by the developer's doting granny for all we know.

"I'm just having a look"

Melillo's statement that 'just because something's not proven, doesn't mean it doesn't work'  doesn't  cut any ice.... by that logic, I can decide that it's unproven than I can't sing like Lady GaGa, so next weekend I'm going to slap on a meat dress and book the 3 Arena.

In short, Brain Balance doesn't work, and will do nothing more than relieve you of a sizeable chunk of cash.
Save your money and buy a ticket for my gig instead... I'll be barbequing my dress later.

Wednesday, 23 January 2019

Autism & Depression II

So, as we talked  about in a recent post, Autism and Depression are tightly united in the unhappiest of all matrimonies.
(I'm speaking about Depression in parents here, not in our autistic kids).

Depression hangs around in sullen shadows, kicking its heels, until Autism feels sorry for it and gives it a bit of attention... before you know it, Depression has moved in, claimed your sock drawer and redecorated your William Morris prints with scenes of primal anguish and existential terror.

"I was grand til this morning"

Sometimes Depression is relatively fleeting, and only exists for as long as it takes you to dance a devastatingly unsexy tango with the grieving process.
Sometimes, though, not only does it redecorate your living space, but it punches holes in the ceiling and burrows deep beneath your foundations, fracturing your belief in security and exposing you to the cold winds of uncertainty.
Sometimes Depression moves in for the long haul, and takes it's undisciplined wrecking ball with it.

Our primal reflex, in the face of pain, is to flip into full panic mode and to do everything in our power to oust this cuckoo from our nest.  Anything with such immense power to destroy and undermine must be inherently evil, right?
But Depression is a surprising teacher, and often it's worth listening to what it has to say before taming it with medication, exercise and talk therapy.

Depression, and my autistic son, are patient and persistent teachers.... but eventually their team work paid off and I experienced a light bulb moment that can only be called an epiphany.

It took a long time of being unwell, and a long time of trying to get to grips with my son's sunny disposition, to finally realise that living in the moment, without boiling in the vinegar of the past and torturing myself with future possible Maybe-Nevers, is where some semblance of peace lies.
Depression taught me that little in life is certain, and that there's a very thin veil holding together what we perceive as security.  
Everything can change utterly in an instant.  
But it also taught me that we are capable of navigating seismic upheavals, with the possibility of becoming wiser, more compassionate people because of it.  
So, life is punctured with insecurities, but it's entirely possible to not only cope with these, but to become a better person because of them.

Worrying about countless future possibilities is like trying to count the stars in the sky... there's no end or beginning, and even though its hypnotic and attention-devouring, it's a meaningless waste of time and energy.  
I'm not suggesting that we all become irresponsible and feckless, and don't bother planning for the years that lie ahead... but what I'm saying is that the future doesn't belong to us, and plan as we might, there is nothing certain about it.  
When we are aware of this, and accept it, our fear of all the 'what-ifs' diminish and lose their power.

It's important to visit our past experiences to help figure out who we are and what motivates us, but to remain there is a dangerous adventure.  There's a certain kind of sick security that comes with the familiarity of experience, but unless the bad stuff is acknowledged, learned from and filed away, it has a real risk of becoming a compulsive groundhog day of existing in bitterness and pain. 
I know you can't snap your fingers and decide that your tough times no longer cause you pain, but you can mitigate the damage by learning from them and by using your knowledge to make your current world a better place.

My son Fin has a thousand watt smile that lights up from his backbone and radiates like an aura around him.  When he smiles, there are no creases of worry dragging down the corners of mouth; there is no shadow of 3am night-frets dimming his light.  He feels pure joy in the present that is not contaminated with past sourness or future imaginings.
He embodies living in the present.

"Got that sunshine in my pocket"

Fin and Depression chained me to my school desk until I saw that consciously living in the present moment as much as possible is the best long-term way to manage my mental health.  Mindfulness, far from being new-age psychobabble, is a simple (if surprisingly hard to maintain) way of trying to live in each moment as it arises rather than being overwhelmed by what was, and what may never be... and missing our lives in the process.

Even though the notion of living in the present is a simple one, it challenges our default position of thinking ahead of, and behind, ourselves.  
This is a book I can't recommend highly enough, and my own copy is well-worn at this stage.

Depression and Autism don't have to be a negative experience, for all their hardships.

Tuesday, 15 January 2019

Autism & Chinese Medicine

Traditional Chinese Medicine (TCM) has been around for a long time.

For at least 2500 years, it's treated illness using Qigong massage, herbs, acupuncture, cupping (nothing got to do with bras), moxibustion (burning herbs), exercise (mainly Tai Chi) and dietary therapy.
In a world where diagnostics relied on the furriness of your tongue or how chilly your fingers were, this was fair enough; lack of access to a path lab and an MRI scanner fairly limits your ability to differentiate between a gall stone and pancreatic cancer.

But, just because something has been knocking around the planet for a long time does not automatically confer validity ; Iggy Pop, a notorious death-defier, has packed several lifetimes into one spectacularly abused body and he's still showing the Grim Reaper his middle finger... but his longevity does not mean that we should all start doing coke and shooting heroin.
Being a professional coffin-dodger is a low bar to aspire to.
My feeling is that we should base our choice of therapies on something a bit more reliable than forgetting to die.

Don't do drugs, kids

TCM works on the principle that energy flows in channels (or meridians) through the body and connects all the internal organs and functions.   The idea is that health is achieved by balance of the Yin/Yang system by creating the correct tension between opposite forces in the body (and the universe).... the body does this anyway by constantly using feedback systems to maintain homeostasis (although the spiritual element of this is pretty cool). They believe that five phases, or elements (air, water, fire, wood and metal), and the way they interact with other, govern the flow of energy through our bodies.
So, while it may be strangely poetic, or of historical interest to read about TCM, there is no evidence that meridians exist or that these elements exert any influence over our health.  Assessment by practitioners is frighteningly subjective, so two people presenting with identical symptoms could easily be given a different diagnosis.
Also, there's the small matter that it doesn't work.

What is surprising, though, is it's continued popularity (TCM I mean, not Iggy); now that we can peek inside every crevice of the human body and accurately measure our biochemistry, it'd seem inevitable that Chinese Medicine would be put out to pasture along with homeopathy and exorcism.  I suppose what this doesn't take into account, though, is clever marketing and our fascination with the inexplicable; we love an easy bargain (whether or not the product actually works is a side issue) with a bit of mystery thrown in for good measure.

Following the fall of the Qing dynasty in 1911, TCM fell out of favour and became regarded as old-fashioned superstition, but the modern communist party blew air into its lungs and now insist that it's given the same status as western medicine.   The Economist suggests that this may be because TCM is a cheaper and more accessible way to treat their rapidly aging population.  This is hardly an ethical foundation to base your healthcare system on, but political pressure worked, because it's popularity is growing.  A recent endorsement by the World Health Organization, giving it a voice on global health issues, only serves to muddy the water.

It could be argued that Chinese Medicine should be respected as a cultural belief system, and I could just about swallow this if it was a benign (if ineffective) therapy.  But should a therapy be respected just because it's popular or persistent?  I mean, Justin Bieber and fungal infections enjoy a tenacious popularity, and are equally difficult to eradicate, but this this doesn't mean that either of them are good for you.
Firstly, being 'benign', is not really so benign, because you're wasting your time and money on something that doesn't work.  A review of research articles into Chinese Medicine proved this 2938 times over, when they found no evidence supporting the effectiveness of TCM.  Another article cuts to the chase and bluntly states that "TCM is not medicine".  'Nuff said.
Secondly, Chinese Medicine has a health and safety rap sheet that makes a pot of month-old hairy hummus seem like a safe bet in comparison.  There are reports of TCM herbs being adulterated with prescription medication, being toxic in their own right and being contaminated with heavy metals.  In addition, they may interact with other medications and cause relatively 'minor' side effects like nausea, vomiting, allergies, burns, haematomas, contact dermatitis, nerve damage and infections.  Some have even been identified as being  carcinogenic.   
But because herbal products are often sold as dietary  supplements, they neatly side-step stringent drug laws and can afford to play fast and loose with their claims.  Charles Dickens wasn't wasn't being gangsta when he said "the law is a ass".

"I know shit"

Many of the basic ingredients for TCM products are extracted from endangered animals and plants, so if saving the world is your jam, this is another reason to avoid TCM like a dose of genital warts. The Hawksbill Sea Turtle will thank you, and so will the receptionist at your STI clinic.

Here's the thing.
There's a bit of a crazy deal with Autism and TCM, in that Chinese Medicine doesn't acknowledge the existence of Autism, but gamely treats it anyway.  It sounds like a relationship too far down  Dysfunctional Avenue for resolution, but the pair lope along happily together, simultaneously ignoring each other while sticking pins and burning herbs on each other.
Most couples therapists would not take them on.
Practitioners believe that Autism is a deficiency of primary energy in the brain.  Herbal medicine and acupuncture are typical treatments, and I can't help but imagine trying to force feed my son dried grass while stabbing him with needles.  I'm pretty sure that by the end of the procedure I'd have less teeth, and he's still have Autism.
Needless to say (or needle-less, even..... not sorry), there are no shortage of  practitioners claiming to treat and cure (non-existent) Autism, but there is zero evidence that TCM has any impact on it.
Just don't even.

So, don't rely on antiquity as a measure of integrity, you crazy kids.... our children deserve better than that.

Saturday, 5 January 2019

Autism & Depression

Depression, like Autism, isn't just for Christmas, y'know.
You can't dump it in a lay-by after it peed on the carpet once too often, or return it to the pound because it's keeping you awake at night.
Well, you can try,  but it'll sniff you out and find its way back to you, and probably cheerfully hump your leg because it's so happy to be back where it belongs.

"My love for you is toxic and inappropriate, but whatcha gonna do?"

Depression and Autism go together like a match made in a dystopian heaven; even if you've never experienced Depression before your child's diagnosis, the odds of you getting up close and personal with it afterwards are high to probable.  If you're a betting person, you could probably afford to put a week's wages on it.
It's pretty typical to go through the grieving process in the first couple of years after Autism replaces your Orla Kiely interiors with toughened plastic and boil-washable furnishings; your life will never be the same again, and your future dreams have been swallowed up by murky uncertainty.
It's a heck of a lot to process.

Depression is part of this adjustment to a different path, when you relinquish your old life for an unknowable future... and there's no avoiding it; you'll never overcome it unless you go through it (massive cliche alert, but there's always a grain of truth in cliches).
This is the first, and biggest, mistake people make with their Depression; you can't shake it off by pretending it's not there.  It's a desolate, painful experience so naturally our spinal reflex is to do everything we can to avoid it.  We don't enjoy pain.

Trying to silence it with booze, drugs or any reckless adrenaline-seeking is an obvious reaction, but only serves to drive the pain deeper (and it will emerge in some shape or form down the line)... and  may gift you with the extra problem of an addiction to add to your List of Life Woes.  It's much wiser (but less easy) to allow the Depression in on your terms; to own it, name it and get to know it.

But who in their right mind would welcome it in, listen to it, and see what it has to say?
There's actually a a world of wisdom to be gained from meeting Depression head on, and either curing it or learning to assimilate it into your life.
What used to be called a 'breakdown' is a wonderful description of the desperately raw process of stripping who you thought you were down to your solid core;  everything unnecessary is scorched away and you are left with a clean base from which to grow again.
When you channel your energy into dealing with your Depression rather than avoiding it, you're taking responsibility for it, and overcome playing the victim into the bargain.  This in itself is worthy of self respect.

The funny thing is that we don't always recognize it when it arrives, though; Depression is not always tears, wailing and gnashing of teeth (although it can be that too)... sometimes it appears as a sucking void in your core that makes you feel hollow and frozen inside.  It can make you feel like you're separated from the rest of the world by three feet of glass, and that you're watching yourself go through the motions of existing but you're not really present.  It can surface as panic attacks, social anxiety or phobias... but these are all just different faces of the same illness.

In a weird kind of way, I was lucky that myself and Depression were old pals long before my son's diagnosis; I didn't have the double whammy of having to learn to deal with Autism and my own mental illness at the same time.  My familiarity with it actually helped me hugely in the early days of Fin's diagnosis.
And it's left me in a position that I can offer a few ways to help you through it.

Winston Churchill famously referred to his Depression as his "black dog";  this is a great metaphor.  What's important is that you claim it as your black dog; there's no point in complaining that it's an unwanted mongrel that grief (or dodgy genes, or past traumas) left you as a gift, or that you can't seem to get rid of it no matter how many vodka and tonics you sling at it.
It's yours to deal with; even if it's mangy and smells like a wet carpet, give it a name and own it.

Talk to someone you trust.
Your GP should be your first port of call, and you can talk about medication and/or counselling in a professional way... but ultimately it's having people you know and love to confide in who make the deepest difference.  Unfortunately, you will come across unhelpful comments like "but you look fine" or "what do you have to be depressed about" etc but you'll quickly learn who's there for you, and who'd rather dowse themselves in petrol and play with a box of matches than discuss your pain.  It's a pretty brutal way of figuring out who your true friends are, but that's not a bad thing in itself.  You need to surround yourself with a tribe of like-minded people, and even if that tribe is smaller than before, at least you'll know they have your back and will always have your  best interests at heart.  Life is too short to waste on falsehood anyway.

Prolonged Depression causes shrinkage of the Hippocampus (part of the limbic system in the brain that regulates emotions and is a key player in Depression), which was an exciting (if that's an appropriate word) find to prove the biological basis of the illness.  This points to a future hope of finding ways to repair this damage; already there is tentative hope that antidepressants and physical exercise will reverse this atrophy (although there is no medical consensus on this yet).  While most people subjectively know that medication and exercise helps their Depression, it's hugely important to know that there's a biological basis for this.  The next time someone tells you that your Depression is all in your head, you can reply "why, yes it is... in my Hippocampus to be exact".  Then you have my full permission to flip them your middle finger.  In fact, I insist on it.

Alcohol (even fairly modest amounts) causes pretty devastating damage to the Hippocampus, so if you're serious about taming your black dog, you need to consider cutting way back, or giving up.  This is not welcome news when a few glasses of something is all you have to give you a few hours respite from the weight of reality.  When you pine for Malbec with all the angst of a lovesick teenager, you're in trouble (which is why, after Dry January, I plan on limiting wine to a couple of glasses on a Saturday night).  There is plenty of evidence to show that abstinence aids recovery of the Hippocampus in a pretty dramatic fashion, so this in itself will help bring your misbehaving mutt to heel.

There is no shortage of research to support using aerobic exercise, in addition to medication, to treat Depression.  Even though you might rather paint yourself with treacle and streak through a den of hungry bears, there is no doubt that exercise works.  And if you exercise outdoors you'll get two for the price of one, as exposure to sunlight has been shown to regulate mood.  Starting is always the hardest part, but even the act of putting one foot in front of the other is affirming, and is literally a step in the right direction.

Establishing a routine is a great way to work though the really dark days, when the only thing to motivate you is completing what's next on the list.  It's almost ridiculous in its simplicity, but a written schedule helps you focus on days when light is only a memory.

It's worth trying hard to eat well when you're in the horrors, as fluctuating sugar levels have been shown to affect mood.  It's wise to avoid processed food high in sugar, and to steer towards food high in protein, complex carbohydrates and 'good' fats.  Eating at all can be difficult (just as over-eating can be an issue) so anything you can manage ideally should be aimed at regaining your wellbeing.

Finally, as well as talking to trusted friends, it's worth considering seeing a counsellor.  Sometimes it's helpful to talk out past traumas, to help re-frame them from your current point of view.
It can also help to learn to recognise negative thought loops, and to break them down.  A huge lightbulb moment for me was when a counsellor told me "just because you think it, doesn't mean it's true"... while that may seem  obvious to many, it was a game changer for me, and it took ten weeks of Cognitive Behavioural Therapy for me to learn it.  I've never been accused of being a fast learner.

So, if you can tame and cure your Depression, that's fantastic (and utterly doable).... if you can't, then it's possible to assimilate it into your life and to manage it.

The key is talk, talk, and then talk some more.

Wednesday, 2 January 2019

Autism & MMR (the beat goes on)

It's pretty remarkable that the words MMR and Autism still occupy the same airspace.
It's now over 20 years since the fraudulent link between them (proposed by the notorious Andrew Wakefield) was debunked, but the fear it planted in public consciousness has been painfully slow to shift.

It's hard to know why this is. 
Health scares change with the weather, but the MMR debacle has left a trail of misery in its wake, and it's power to instill fear lingers on like a bad dream.
It's like the bogeyman of public health.

Almost immediately following Wakefield's paper, a number of epidemiological studies were published, presenting solid proof that the MMR does not trigger Autism.  Probably the most notable of these was a large scale study in Denmark (involving half a million children over a 7 year period), which showed that the incidence of Autism in the group who received the MMR was identical to those who hadn't.  Other smaller scale studies reliably replicated these findings.
But these did little to dent the abrupt drop in MMR uptake, and the consequent increase in cases of measles, mumps and rubella.

The fact that the Lancet published Wakefield's paper at all is still a bit of a mystery; at best it was shoddy research (with a sample group of 12 children, no control group, selective sampling of children with pre-existing health issues, and the performance of invasive medical procedures without ethical clearance).  At worst, it was intentionally concocted as canon fodder to be used in legal cases he stood to benefit financially from; it slipped Wakefield's mind to mention that he was employed by families to help them prove that vaccine damage was responsible for their children's autism. A conflict of interest clearly caused him no sleepless nights.
This, and the small matter that no credible physical evidence of a link was ever identified.
How a sub-standard, ethically compromised piece of writing created such devastating, and long-reaching, shock waves has been a tragic education. 
What should have ended up in the shredder pile, somehow got airspace in one of the most influential medical publications on the planet.

Vaccines are relatively new kids on the block. 
It's still within living memory that parents didn't expect all their kids to survive until adulthood; diphtheria, whooping cough,TB, polio, measles, mumps, rubella and some strains of meningitis devastated families, complicated by the fact that there were also little or no medications available to treat these diseases when they hit.  So when children got sick, it was in the lap of the gods whether they lived or died; many died, and a great number more suffered complications like brain damage, deafness, infertility and permanent physical disability, among other problems.  It's almost impossible for modern parents to imagine the horror of witnessing your child going through this; so when vaccination campaigns became available, it must have been nothing short of a miracle.

But humans are peculiar creatures. 
Now that we've become accustomed to the privilege of healthy children, we've become complacent; none of us have watched our kids slowly asphyxiate from whooping cough, or convulse with measles.  We can afford to entertain a self-serving moneygrabber who abused his credentials to link the MMR to Autism, even though his 'work' has been roundly discredited.  It also doesn't help that a handful of publicity-hungry celebrities jumped on the anti-vaxxing bandwagon, and that conspiracy theorists blame Big Pharma for intentionally poisoning babies with the preservatives used in vaccines.

But these aren't the only reasons that anti-vaxxing remains a problem.
My experience as a Practice Nurse tells me that the response by public health powers-that-be fell way short of  rehabilitating the MMRs reputation.  They are no competition for the savvy media anti-vaxxers, and all that most parents recall from sensational headlines are the words 'MMR' and 'Autism'. They've been joined together in unholy matrimony, in the most dysfunctional of all relationships.
The perfect storm is completed by the fact that most parents notice the first signs of Autism in their child around the time the MMR is given.  Pointing out that correlation doesn't mean causation means nothing to a worried parent.  Appealing to a new parent's objective sense of reason is like nicely asking a rabid momma bear if she wouldn't mind not ripping your face off.  Visceral nature trumps sweet talk every time.

Wakefield was finally found guilty of over three dozen charges and struck off the medical register by the British General Medical Council, and his paper was  (eventually) retracted by the Lancet.  Weirdly, he continues to enjoy a cult-ish sort of celebrity in the USA,  rubbing shoulders with the likes of Donald Trump
Knowing this, and knowing that evidence is mounting that autism arises in the womb, it's nothing short of astounding that a poorly executed piece of research motivated by nothing purer than greed continues to frighten parents into eschewing the MMR. 

Administration of baby vaccines was part of my job, but I spent more time explaining  that the jab was not the equivalent of a neurological neutron bomb than actually giving it.
I really hope we never see a return to the bad old days of burying children before their time to wake us to the reality of greed fuelled hype.

Friday, 28 December 2018

Autism & Parents

People still occasionally say to me that a special needs child is only sent to those strong enough to cope with the extra emotional (not to mention physical) weight.... that some of us have an extra strong backbone crying out to be pressure-tested by the demands of` a lifetime of sacrifice (by "sent" I assume they mean selected by some bored deity high on magic mushrooms, and not accidentally Fed-Exed to the wrong address).

I don't feel angry when I hear this.... sometimes people just don't know what else to say.
Or they believe they're somehow paying you a compliment.
Or it's a way of saying "you're coping great on your own, I'm outta here" and they give themselves a handy get-out-of-jail-free card.
Whatever the reason, it's a belief I  like to challenge, simply on the grounds that it's just plain wrong.

Special needs parents don't have titanium scaffolding to prop up our lives; our frameworks are just as vulnerable to the slings and arrows of fortune as anyone else's.
No benign angel sprinkles fairy dust over us to protect us from the crushing stress, heartache and loneliness that  arrives abruptly on our doorstep, with no intention of ever leaving.
We are not blessed with especially tough mental resilience to power us through sleepless nights, failed marriages and elusive dreams.

Special needs parents are not special.

But, when I take a break from licking my own sorry wounds and look around me, it's obvious that everybody has tough stuff to carry.
Special needs parents don't have the monopoly on being dealt a tricky hand of cards.
We can get self-absorbed in our own troubles to the point of being blind to the pain being nursed by others.
It's understandable to have moments of fear and sadness and rage, but allowing ourselves to fall down the rabbit hole of self-pity, resignation and a sense of entitlement is a dangerous seduction; making sacrifices does not mean we get to wring our hands and play the martyr.

If life was fair, we would immediately receive all the state support necessary to allow us to care for our kids in a wholesome and productive manner; but we all know this world is often unbalanced, capricious and dismissive.
If life was fair, we'd all have supportive families, loyal friends and understanding employers.
If life was fair, I'd be six inches taller, twenty years younger and my hair wouldn't have a borderline personality disorder.
The reality is that we have to make sacrifices, which are painful and bitter at the time...  but which have the potential to become weirdly transformative and make our lives richer in a way we never expected.

It's easy to become bitter and cynical; to believe that life is filled with obstacles and betrayals and that trying to make our world a better place is a pointless exercise... we never asked to spend the rest of our lives putting the needs of someone else above our own, clipping our own wings so we tumble out of the sky we once cruised in, right?
But the world owes us nothing; we are dealt our cards, and it is our choice to make of them what we will.

What's hard (and infinitely better), is to accept our responsibility as ours, and nobody else's.... to learn to accept the exhaustion, the disappointments and the losses... and to allow them, in time, to usher in self-reliance, compassion and a tribe of people of integrity.
Learning this is not a linear process; it is an uncharted map scattered with dead ends, backtracks and roads to nowhere... but it's a map of our own making.
Our own perilous adventure.
The journey will disillusion us, scar us and without question change us, but accepting our load with good grace and intention means we get to make it with integrity.

Wednesday, 19 December 2018

Autism & Herbalism

Shopping is a complicated business.
It's not really enough to scribble a quick grocery list on the back of an envelope and stick it in your back pocket; hitting the shops requires military planning, deep moral questioning and more than a little existential angst.

Have the products been ethically produced?
Is the food dairy-free, gluten-free, additive-free, fat-free, nutrient-free and flavour-free (and, just to be safe, food-free)?
Prior to spending their afterlife as a delicious quarter pounder, have any animals been cruelly subjected to Justin Bieber in their final moments?
Do you possess the appropriate qualifications in pharmacology to decide if food is just food, or if it's a cure for cancer, autism and bad taste in shoes?

The final question is most important if you intend curing your child's autism with condiments normally used to tart up a lamb stew (although the shoe thing warrants attention too).
Next time you go shopping, you'd be forgiven for having a small nervous breakdown in the herb section... I mean, how embarrassed would you be if you cured your son's diabetes instead of his autism by adding the wrong bit of greenery to his dinner?
Apparently, it's important to know your sage from your onions.

Herbalism.... ain't nobody got thyme for that

Herbalism is the medicine we used before we had, well, medicine.  As science and experience evolved, the useful aspects were harnessed and adapted, while the ineffective stuff was discarded or used to disguise mediocre cooking.  Many drugs we're familiar today are derived from plants; digitalis (or Digoxin...  used to slow down cardiac arrhythmias) was extracted from the foxglove.  Opium is taken from the poppy.   Quinine, present in tree bark, is a great treatment for malaria.  It was the only medicine available to people before methods were developed to make them safe and reliable.
However, in its natural state, achieving the optimum dosage is an inexact science, and overdose could be a bigger problem than under-dosage.  Because herbalism isn't a regulated discipline, it isn't subjected to proving its safety and efficacy with scientific rigor; they can make sweeping claims based on vague surveys and old wives tales without facing consequences from a governing body.  Since 2005 a license has been required in Ireland to practice herbalism, but as it stands, I could boil a bit of mint in my tea in the morning and call myself a herbalist.  A license is granted on the basis that a product has been in long-standing use, and not on the strength of clinical data.
In a perplexing move in 2015, the UK government ruled that alternative therapies (including herbalism) don't need to be regulated on the grounds that there is no evidence that they actually work.... so they acknowledge that they're effectively useless but are quite happy for the public to continue buying them from unregulated practitioners.  I'd imagine it would make more sense to encourage the public to pursue therapies that actually work, so it seems weirdly counter-productive to public health.
Call me a Doubting Thomas, but I prefer my therapies to be based on reliable, repeatable science and not on half-remembered bedtime stories.  And it pays off to be skeptical, as in 1998 The American Journal of Medicine estimated that herbal medicine caused 16,500 fatalities....  these are odds I'd rather not play dice with.

So, what I'm learning is that not only is herbalism clinically useless, but can also be downright dangerous. Just because a product is labelled  'natural' does not automatically confer safety; arsenic is natural.  So is uranium.
Herbalism is lent credibility by being allowed to be sold on the same shelves as tried and tested pharmaceuticals.  In an ideal world, this wouldn't happen.  Kudos is inferred by associating them with real medicine.

The chicken knows

I'm seriously considering approaching universities with a proposal for a new undergraduate degree programme; it's called  'Running The Gauntlet of Tesco Without Losing Your Shit'.  I expect it'll be over-subscribed.

Seriously, don't bother with herbalism to cure autism, IBS or the embarrassing itch you've had since your lost weekend in Magaluf.  It won't relieve you of anything other than time and money.
Save the herbs for the kitchen.

Tuesday, 11 December 2018

Autism & Deep Brain Stimulation

I can think of many occasions where an electrode planted in my brain would be fabulous.
It might buzz awake the sensible voice warning me that a third glass of Malbec is playing liquid Russian Roulette, and that the odds are not in my favour.
I could set it as a timer to remind me that spending an hour playing word games on my phone is not as productive as, say, cooking actual food or collecting kids from school (I mean, who would ever forget to collect their kids from school???).
Or I could use it to interrupt negative thought loops; I could set it to tell me that I’m a confidant, quick-witted genius who isn’t allowed near a catwalk because I make all the other models look bad (forget mindfulness… delusion is the true path to inner peace).
Surgically placing electrodes in your brain sounds like something a Star Trek arch-villain would do to make Captain Kirk forget to gel his beautiful hair into place, or to save the earth or something… but it’s actually not quite as space age as it sounds.

"Don't touch the hair!"

Deep Brain Stimulation (which could be a spa treatment for nerds?) involves implanting electrodes in specific regions of the brain to interrupt or stimulate electrical activity.  A battery pack is first implanted in the chest, and after this heals, implants are positioned in the brain and connected to the battery via internal wires that thread down through the neck. 
It's mainstream use is mostly to treat the muscle rigidity, tremors and tics associated with Parkinson’s Disease, but in the last few years DBS has wandered off the familiar pop scene and into the indie wilderness.  It's been used, apparently with success, to help improve the quality of life of a few autistic people whose lives were being made miserable with severe self-injurious behaviour and overwhelming obsessions.

In 2009 a young American woman had DBS electrodes implanted in a desperate attempt to manage her increasingly distressing symptoms.  DBS has shown some promise with treating severe OCD but had never been trialed with autistic people, but the FDA allowed its use for her on an individual basis.  Unknown to each other, around the same time, a teenage boy in Germany also underwent the procedure in an effort to manage his spiraling aggression.  Both kids responded positively and now have a greatly improved quality of life.
That's really good news.

But there’s a number of things to consider before we blindside a neurosurgeon with an electrode, a handful of Duracell batteries and our child's brain in a jar; the potential benefits would have to be carefully balanced against the very real risks.

First, its use as an autism treatment has not been fully researched.  A couple of happy endings do not guarantee consistency of results, and it’s entirely possible that the improvements seen in these people were coincidental.

There are medical risks associated with brain surgery including death, brain damage, stroke and infection.  The devastation wreaked by autism had better be pretty damn spectacular to justify going toe-to-toe with these four giants.  While I'm fairly sure it would improve matters if someone gave the porridge between my ears a good stir with a soup spoon, staking my son's well-being by juicing up his brain in the hope of improved behaviour sounds like a high-risk gamble. I feel you'd have to be stretched to beyond breaking point to place bets against these Goliath's  .... but, as we know, there's no shortage of families devastated by autism and, to them, maybe the odds seem reasonable.

Parkinson’s disease affects a very specific region of the brain, so it’s a no-brainer (sorry, not sorry) as to where to position the electrodes.  As far as I'm aware, there's still no hotbed within the brain that autism can call home, though, so it seems that the surgeons involved in these cases used educated guesswork to position their electrodes at the points governing what appeared to be worst of the symptoms.  Educated guesswork is OK when decorating your house, or buying a birthday present, but when it comes to jabbing needles into your child’s grey matter, I’d feel a lot more comfortable with laser precision than a ‘let’s-see-if-this-works’ approach. That said,  a paper written in 2015 suggests that the basolateral nucleus of the amygdala (a real part of the brain, disappointingly enough... and not a Deep Space 9 alien) is a reasonable location to place the electrodes due to improved understanding of the pathophysiology of autism; although they finish by saying that further study is needed to address 'mechanistic and operative challenges'.... which sounds a lot like they're not entirely sure what they're doing.  If I allowed someone to tinker with my son's electrical circuitry, the only challenges I'd be comfortable with would be to wonder if they are fabulous or just plain amazeballs.... learning on the job would not be an option.

There is a risk of the electrodes moving out of position and causing unwanted side-effects, and the batteries need to be recharged frequently.... although these seems like minor problems compared to the whole death and uncertainty thing.

The notion of subjecting your child to this would make most parents sprint to the shops to buy industrial strength cotton wool and bubble wrap to swathe their Little Darlings in.  
But we’re not most parents.  
If you’re on first name terms with emergency room staff because of the consequences of aggression, it’s safe to say we would consider most options, no matter how wildly off reservation they may appear (this is one of the things that make us so susceptible to quackery).  
If your child is living in a virtual prison because of unmanageable obsessions, or is living in an actual prison because they're so frequently restrained to prevent injuring themselves and others....  and quality of life (both yours and theirs) is a half-remembered fairy tale you think you heard about once, then it’s fair to consider all options.

DBS might not be able to jolt me into becoming a cool, classy member of society (see delusion above), but if  my child was enduring a miserable existence, it's a treatment I wouldn't immediately discount.  While I'm not crazy about the risks at stake, for some people it could be a judgement call between enduring an existence and living a life. 

Friday, 7 December 2018

Autism & CEASE

Is there anything worse in this world than a quack autism therapy?
I suppose famine, war and pestilence might trump them in the assault-against-humanity stakes, but if we eliminate anything that doesn’t require a Horseman of the Apocalypse to ferry it into existence, quack autism therapies have to be among the most heinous inflictions we encounter.
(Sidebar; on balance, we have to assume that bad haircuts, Bulgarian wine and Justin Bieber are also guilty of inflicting unnecessary suffering on the world, but some things are just a given).

Quack therapies are based on misleading pseudo-science, fraudulent promises of hope to desperate parents and the siphoning of cash from proven therapies that would be of actual benefit (as opposed to ones filled with more holes than a Monaghan by-road).  
I suspect quackery has been around since humans discovered they could swindle money from worried people using lies and manipulation, and then could shame them into silence when they discovered that they’d been cheated.  
It’s a clever way to turn a fast buck without using physical violence, but the injuries they inflicts are all too real.

There’s only one thing I can think of that’s worse than a quack therapy...
... and that’s several quack therapies spliced together to create the lame Super-Duck of all quackery.

(Not a doctor)

CEASE (Complete Elimination of Autistic Spectrum Expression) is a therapy that is in contention of becoming the super-group of all pop quackery, as it bases its treatments on the debunked red herrings of leaky gut syndrome, vaccine damage, unbalanced gut flora, amalgam dental fillings, medication use during pregnancy, food allergies, oxidative stress of the neocortex, infection, microwave ovens (seriously), exposure to plastic and heavy metals (I’m very proud of myself for not making Metallica jokes here), and premature birth.  It’s like a drunk three year old swallowed too much quack candy at a birthday party and puked up an indigestible mix of nonsense…. but instead of scraping it into the bin where it belonged, it was framed, packaged and sold as as a spectacularly unattractive treatment. 

CEASE is the cobbled together Frankenstein of Dr Tinus Smits (now deceased) but enthusiastically continued by his faithful acolytes.  It claims to reverse autism by detoxifying clients using homeopathy, fish oils, zinc, Vitamin C, a sulphur supplement called MSM, Vitamin B, probiotics, L-glutathione and L-glutamine supplements, L-Cysteine supplements, Magnesium, orthomolecular support (say, what?) and diet restrictions.  The homeopathy element of the treatment is composed of distilled water and a solution of the vaccines  (in the spirit of like-cures-like) believed to cause autism; it is so ridiculously dilute that it has been compared to finding a single molecule in the Pacific Ocean.  The odds of a client ever coming into contact with an ‘active’ molecule is remote… but homeopaths believe that giving the solution a good shake in between each dilution (a 30C solution will have been diluted a hundred-fold 30 times over) instils magical properties into it giving the water a ‘memory’.  
It’s like giving someone the memory of paracetamol for a headache and charging you for the pleasure.

In the recent years, Dutch, Canadian and British regulatory bodies have investigated CEASE for fraudulent claims and it was found in breach of advertisement regulations and marketing standards.  They were also instructed to refrain from telling parents that they must never have their children vaccinated.
That said, CEASE appears to have done everything except live up to its name, as it seems to continue to thrive despite complaints levelled at it.  The Guardian reports that currently there are 120 registered homeopaths claiming to cure autism in the UK alone.
They don’t seem to be unduly worried about the weight of the law or their conscience, so it remains up to parents to be vigilant for cures in quack’s clothing.

"Got my degree from a Fowl University"
(not sorry)

Friday, 23 November 2018

Autism & Fun

Nobody needs a memo to remind them that autism is hard work.

When you cancel arrangements you made with friends because you've been up since 2am listening to My Little Pony in Czech, it seems like life really sucks sometimes.
It sucks some more when your son breaks the stove glass you only replaced last month because the sound of breaking glass is music to his ears.
And it sucks like a Dyson trapped in a whirlpool, swirling inside a supermassive black hole, when you have to sit on the stairs holding your son's hands to stop him trying to draw blood with his own nails.

I think what I'm trying to say is that sometimes life sucks.
Of course you don't have to have an autistic child to join in the fun, but I find it really helps.

The dogged relentlessness of autism can grind the sunniest of natures into dull misery, and it can easily become a low cloud that darkens every aspect of your life.  The cloudiness can become a pervasive backdrop that shadows every action, thought and decision you make, often unknown to yourself.
Basically, autism could suck the joy out of Doris Day singing 'The World Is Wonderful' while working her way through a crate of Sunny D.

"I'm screaming inside"

I wouldn't dream of patronising you by suggesting that this state of affairs can be turned on its head (maybe by summoning up some demonic underling to magic it away in exchange for your firstborn, or by burning the right proportions of essential oils by the light of a new moon?).... it's pretty clear that there's no magic formula that'll allow us to add enough good stuff to cancel out the bad stuff.  The difficult stuff will always be there (although in time will be mitigated by education and the judicious use of proven therapies) and flinging lots of things at it to divert our attention will not make it go away. We need to make peace with the fact that autism will always be hard, and will always be here.
What we can do to make life manageable is to create a counter-balance to the hard stuff; to introduce a bit of light that will push back the weight of the clouds.

One of the best therapies I have ever used is cheap, adaptable and available instantly.... the only cost is to your dignity (which you're way better off without anyway).  Autism is a serious business, and the notion of giving it a two fingered salute by having fun is an attractive one.
Nietzsche famously wrote that if you stare long enough into the abyss, the abyss will stare back... my feeling is that if you drop a handful of glitter or a paintball into it, at least the misery it coats you with will be shiny and badly behaved.  Most definitely do NOT go gentle into the good night (maybe Dylan Thomas had some inside information on autism as well).

There's something gloriously defiant about having fun.
In a life filled with autism, illness, loss, mortgages, Justin Bieber, war and general hardship, there's a wonderful sense of being more than all your problems if you can take off your shoes (as well as any sense of grace or decorum you  might imagine you have) and bounce  on a trampoline with your autistic child.  It's entirely possible that you'll spend most of the time bouncing on your back with all the panache of a drunk, electrified rhino, but when you get over yourself, it becomes apparent that rhinos are having way more fun than we are.  And they never worry about the mortgage.

In the spirit of scientific endeavor, I've set myself the serious task of doing at least one fun thing a week with Finian... the only caveat is that I have to do all the fun stuff with him, instead of watching like a nervous mother duck from the sidelines.
So I've put my baby-trampled bladder to the test at Airbound in Dundalk (really recommend it) and managed to retain my bodily fluids as we jumped.  Kudos to the midwife who taught me pelvic floor exercises twenty years ago.
We've been to Tayto Park (another great spot for autistic kids) where I surprised myself by not vomiting on the heads of spectators (note to self; never stand within spray distance of a  roller coaster).  We go for forest walks where we search for the Gruffalo, and swing for the sky in playgrounds, not caring that we're the two biggest kids there.  We feed the ducks and definitely never run at them because it's hilarious to make them flap (who'd even do that?).
As soon as I get over my fear of water (I've started swimming lessons, but still don't trust the pool not to murder me) we'll find some water-based stuff to do.  Safe in the knowledge that (so far) no-one has ripped their eyes from their heads and poured bleach in the sockets after seeing me in a swimming costume, I also feel confident that I don't pose a threat to public health.  Once again, I just needed to get over myself.

But really what it's all about, is pushing back the hard times to remind us that life is worth living.  In a curious way, the hard stuff makes the fun times all the sweeter as they're so rare.  I think the saying goes that what's seldom is precious.
Autism is a brutal teacher, but it does teach.
Learning to be grateful for the good times, and proactively creating a bit of fun to balance out the sheer slog of it all, is a good lesson to file away, and an even better one to use.

Tuesday, 13 November 2018

Autism & the Parent Trap

Being a parent is the best, and hardest, thing I have ever done.
For those of us who choose, or are able, to have kids we believe parenthood is a medium-term contract that'll pretty much terminate in 20 years or so, at which point our kids will backpack across unmapped territories, only remembering to send us the odd postcard when they aren't busy barreling down Angel Falls or dodging piranhas in the Amazon.  Or working in a fulfilling job.  Or just being awesome human beings making the world a better pace. 
Active parenthood has a shelf life... until the day it doesn't.

Thanks kids

When my first son was born,  I was consumed by fierce love; my ambitions to develop my clinical practice and become a shit-hot nurse (that's an actual job title) quickly unspooled into distant second place to being his mother. The ferocity with which I loved my new baby was primal and wonderful; Momma Bear Syndrome is a dangerous and barely tamed beast. I relished the wild energy it gave me, and embraced the tunnel vision that came with parenthood. I chose jobs that dove-tailed around family life and paid the bills, but that didn't syphon my attention away from my young family.  A visceral survival instinct meant that my clinical practice books were shelved along with my focus on self-development. When you have a tiny, dependent baby, the self no longer matters... all that matters is keeping your infant safe and alive.  Biology dictates this.

Three years later when my daughter was born, I was in peak Parent Mode.  All my plans for completing my degree were a hazy memory;  I only wore clothes I could boil-wash, and didn't bother with makeup because removing it at bedtime was just one more job I could forego.  Expediency trumped self-expression at every turn.  Having two small children was tough and awesome, but I was up to the job, even managing to juggle kids, depression and part-time work in the meantime.
My 'career' had long since stopped being a career and became a job.  That was fine. I knew that being a parent was self-limiting; the goal of parenting is to help your kids grow into well-rounded, resilient, independent adults. The day would come when they would strike out into the world and fill it with their own visions and energy, and then I could return to my ambitions and switch the focus back on my own path.

When my youngest son was born four years later, I could rap motherhood like Slim Shady, and I knew it was only a matter of time before I had raised three amazing adults who would make the world shine brighter.  They make the world glow with ease, but when Finian was diagnosed with Autism, all assumptions of future independence became more slippery than an Irish politician in a tub full of greased-up eels.

Parenthood consumes you, but Autism devours every ounce of you.
By the time you wake up from the haze of lunacy that Autism blitzkriegs through your life, you can barely remember what your favourite colour is, no less what brings you joy.  I got to the point where I couldn't read a book, didn't know what I liked or disliked,  had no confidence in my own abilities and couldn't make a decision to save my life;  I became utterly lost and could see no clear way to move forward again.  Finian is amazing and has taught me more than I could ever hope to teach him, but it's easy to find ourselves snared into a life-long parent trap.  Being a parent doesn't end, but parenting does, and most of us expect that at some point an equal relationship will evolve with our kids. At some point, your adult kids will be taking the world by storm while you light a few fires yourself.
But Autism grabs this notion by the throat, shakes it around like a frisky terrier, and finally tears it to pieces before inviting you to have a long, hard look at what it's done.
I have no illusions that Finian will ever be independent, but equal in my struggle to help him realize his full potential, is my own need to become all that I'm capable of too.
It is so easy, so seductive, to remain in the role of Uber-Carer.... to allow exhaustion, fear and loneliness  to limit us from pushing our own boundaries and becoming people in our own right; not just somebody's wife or mother or carer, but someone with their own adventures to strike out on.  There's a measure of safety to remaining on a familiar, but suffocating, path, but ultimately this isn't good for anybody.
Getting to know ourselves is the work of a lifetime and it seems to me that a key part of this is learning to express ourselves in whatever way lights our fire.  It could be joining a club, creating something beautiful, being open to new friendships, considering a new career, painting your nails... whatever helps you remember who you are,   No matter how much we love our kids, we don't have to be chewed up and swallowed by Autism.
Being a special needs parent is devilishly tricky, but it doesn't need to become a trap.
Autism parents are a ballsy bunch.... diverting some of that courage in our own direction could be a game changer.

Friday, 9 November 2018

Autism & Broccoli

I have no strong feelings about broccoli.
It's a difficult thing to get passionate about.
It's a pretty inoffensive side-dish, not known to polarize emotions or provoke controversy.
In fact, I didn't even know broccoli existed til about 1985. 
Until the Irish economy exploded and we got strung out on complicated coffees, and developed notions about playing sports other than GAA, our dinner plates were a simple affair.  Before this, the only veg we were familiar with were overcooked cabbage and a plate of mashed spuds the size of a child's head.  Sometimes we'd go crazy with a few brussel sprouts at Christmas, but that was for show more than substance.

But a lot of changes occurred in Ireland in the 1980s.
We began to question religion and wondered troublesome things like "is it really my fault that some ancient Israeli dude was executed for being a bit of a hipster?.... I mean, I wasn't even there" and "exactly how is Scientology any madder than Catholicism?" (my religion teacher hated me).
The slow demise of catholic guilt led to crazy social reforms like the introduction of contraception and divorce; suddenly single parent families were a thing, and relieved wombs were given time to consider their options in between churning out hundreds of stalwart, god-fearing babies.
Protestants and Catholics got a bit sick of shooting the heads off each other and started to take tentative steps towards developing a peace process; it only took 800 years for god warriors to consider that maybe murdering each other was kinda missing the point of the religion they supposedly protected.
So, even though the 80s were mostly about shoulder pads and massively back-combed hair, social reform crept in with better education and shook up our rain-soaked country; it was a pretty confusing time.

But things didn't start to get seriously freaky until our mothers started buying things like oregano and bell peppers from the supermarket; it was like martians dropped the Shroud of Turin on our kitchen tables with the condition that we somehow add it to our shepherd's pie.
We had no idea what to do with this stuff.
We spent many happy Friday evenings prodding these curiosities with our fingers.... if memory serves correctly, a drill was produced in our kitchen at one point to go toe-to-toe with a particularly Stalinist coconut.
But in the middle of mistrusting chilies, and treating avocados like primed grenades, broccoli slipped unobtrusively onto our plates, and has been sitting there quietly since.

But, as it turns out, not so much sitting quietly as biding it's time.

Now it's wide-eyed innocence has been called to question as broccoli seems to be enjoying an image overhaul and has become the new darling of autism treatments. It has become the Pygmalion of the humble side-dish, and I'm beginning to long for the day that food can just be food, without needing to be a pharmacological panacea for all ills.

As ever, when I hear about another dietary treatment for autism, I feel an overwhelming urge to strap myself to a railway track at rush hour and have a nice little lie-down.  I don't so much feel tired, as tired of feeling tired.  The oncoming train of inevitable disappointment and cynicism couldn't put me out of my misery quickly enough.  Along with turmeric, coconut oil, megadoses of vitamins and some seriously dodgy cabbage soup, I assumed that broccoli would join the ranks of The Ridiculous as far as treating autism goes.

.... a number of research articles indicate that sulforaphane (a compound within broccoli already cited  as being helpful in inflammatory conditions) has been useful in alleviating symptoms associated with autism.  This small, double-blind, randomised study yielded some positive results, although the data seems to have been collected by parental observation.  Another on-going study looking at the safety and efficacy of sulforaphane in the treatment of autistic kids is giving it the green light.  A paper published in 2014  found behavioural improvements in autistic people receiving an active supplement rather than a placebo over an 18 week period. 
Research into its usefulness seems to be grinding along without fanfare, and it's a little surprising that marketers haven't pounced on this as their new golden egg.  I suppose the difficulty there is that they can't suddenly start selling broccoli on prescription.... even if they stick it in a pretty box or add some sciency jargon to it, it's still just broccoli.  Hate that.

autism cured

In fairness, in all my intensive, in-depth research (half an hour sifting through Google with a strong coffee), I didn't come across anyone promising a cure.  There are no websites promoting broccoli-themed health spas where you sign your house over to a "therapist", wrap your child's head in green vegetation and feed him nothing except, well, broccoli.  The science behind the interest in it as a treatment seems pretty solid.

Autism & Broccoli is probably not something I'd order in a restaurant, but I wouldn't rush to throw it on the compost heap either.  If it helps manage the hard stuff, so well and good.  If it doesn't, you won't lose the shirt on your back over it.  So it looks like there won't be any blood on the tracks over this one.