Saturday, 16 November 2019

Autism & Moments

Today I had a moment.
Not one of those moments when I wonder why menopausal women grow chin hair (to keep us warm?  To give us something to play with when we're bored?).
Not one of those instances where I think it'd be quite nice to enjoy more than one glass of malbec without staring longingly into the pits of hell, knowing I'd be in a lot less pain there.
Not even one of those awful flashes of reality when I worry that maybe Benedict Cumberbatch won't ride into Castleblayney on his harley and whisk me away to a magic paradise where I'll always be young, thin and beautiful. 
(My husband is OK with this, by the way..... I'm pretty sure he has a crush on BC as well)

It was one of those rare moments of clarity when I saw the results of twelve years of  speech therapy, ABA, occupational therapy and autism-specific education.
Finian and I spent a few happy hours walking in Muckno Park, followed by hot chocolate in Eileen's (best Autism friendly tearooms for miles, just sayin').  Ginta gave him extra marshmallows and people stopped for a chat or just say 'hi'.
It was all stunningly normal.

Twelve years ago, this was unthinkable.
I had a son who screamed, smashed, eloped, smeared, stripped, self harmed, screamed some more, bounced off walls, ate glass, used me as a punch bag, did a bit more screaming, slept three hours a night, never stopped moving, screamed again, couldn't cope with haircuts/nail trims/showers, was non-verbal, subsisted on mashed potatoes, wore nappies til he was six, screamed a bit more.... and this is just off the top of my head.

We were prisoners in our own home.

And today I had this beautiful moment when I looked at my 15 year old son and felt almost weak with gratitude. 
We just enjoyed each other's company without needing an assistance dog, a watertight schedule and escape plan and some industrial strength xanax.
It was magic.

feral boy spotted in Castleblayney

Now, my son is still Autistic.
He still does some of these things, some of the time.
But over a decade of dogged input and a countless team of therapists allowed us to trek through a forest and enjoy a hot chocolate, all without the exhausted dread that coloured most of his childhood.

But while the moment was magic, the hundreds of hours that led to this moment were not. 
His progress is not the result of crystals, reiki, bleach enemas or anything with more quackery than a coked up duck farm. 
It was the result of work, persistence and faith in the rigors of science.

There are no shortcuts to progress.
Magic moments are forged in the mundane, not in the fantastic.

Sunday, 4 August 2019

Autism & Whipworms

If I had a euro for every time I heard someone (OK, mostly my mother) say "there was no such thing as Autism back in my day", I'd have enough money to pay someone to write a witty end to this sentence.
I'd also be able to afford a decent lawyer to bust me out of prison for matricide.
Life would be so much easier, and a lot less murdery.

But as it stands, it's pretty clear that Autism has been around since Moses became pervasively fixated on weather reports, methodically categorized all known animals into sub-groups of two, and further catalogued them by their fondness for water sports (to make the most out of the flood he kept banging on about).
Word has it he achieved all this while persistently scripting car insurance ads in Swedish and chowing down on dry pasta, although this didn't make the editor's cut of the bible.

"doesn't look like rain to me"

It's pretty much accepted that improved diagnostics and better (but not perfect) social care has lead to the current "explosion" of Autism.
The escalation in the incidence of Autism is not so much due to misaligned chakras and those infernal vaccines we insist on giving our kids (because we kinda like it when they don't die), but more so because we no longer commit our unusual children to institutions and forget they ever existed...  and we now consider things like infanticide a tad overzealous in our quest to maintain a functional family life.

Despite this, some people continue to insist that Autism is an unwelcome side effect of social progress and blame advances in our knowledge of microbiology (and subsequent 'obsession' with cleanliness) for its genesis.
There is some evidence to suggest that the 'hygiene hypothesis' (the increase in autoimmune and allergic diseases in developed countries) may contribute to the incidence of conditions like asthma and multiple sclerosis.
The idea that modern hygiene standards have upset the gut biome and precipitated a spike in inflammatory diseases was further developed by a team of scientists based in the University of Iowa.
They hypothesised that removing our exposure to a parasitic porcine whipworm, which was thought to both dampen down the inflammatory response and stimulate  immune regulatory pathways, was the cause of this spike.  They went on to have some success with  treating Ulcerative Colitis and Crohn's Disease using this theory.

However, as yet, there is no concrete evidence that Autism is an inflammatory disorder. 

Despite this, the tenacious research of Stewart Johnson, (the father of an autistic boy who exhibited particularly challenging behaviour) lead him to track down these researchers and to petition them with with his own research.  
Johnson presented the group with  data suggesting that there may be a link between inflammation and Autism, and was persuasive enough to convince them to run a double-blind, randomised, placebo controlled clinical trial to assess the effect of exposure to trichuris suis ova (or TSA, the eggs of the whipworm) on reducing repetitive behaviour, social cognition, aggression, irritability and global functioning associated with Autism.

I have often used the term "pig in shit" to describe my son eating a bag of marshmallows the size of his head while watching Bob the Builder do his thing in Cantonese.... but up until now I considered the phrase purely metaphorical.  I have to say that literally exposing my boy to a pig in shit (not to mention the parasitic worms within it) was not in the Game Plan when he was born.
(Side bar; my son's Game Plan is the most revised edition of  Life Goals in existence.... what started out as 'grow up, go to college, get married' has been edited to 'furniture is not edible, and please don't masturbate in public'
It's a work in progress)

as good as it gets

As it turned out, the study was terminated as it failed to demonstrate "significant activity" (which I think is a sciency way of saying it didn't work).

So, worms living up pigs’ bums don't treat Autism, and now I can have fewer bad dreams at night.

Maybe the notion that you'll cure Autism if you live with pigs and don't wash your hands was an exercise in extreme optimism (bordering on enjoying one too many magic mushrooms in the lunchtime salad), but kudos must be ascribed to Stewart Johnson for pushing science to the extremes of its logical conclusion.
If we didn't have thinkers and dreamers, the world would lack the printing press, electricity, and ice cream Mars bars (there has to be a Nobel prize in that somewhere).

While I'm not glad my son's life (not to mention my own) is made more difficult by Autism, there's some small comfort to be found in not having to feed him piggy whipworms to treat it.
It seems that every Autism shaped cloud has a  mercifully worm-free lining.

Sunday, 30 June 2019

Autism & Pride

Yesterday I popped my Pride cherry by attending the biggest, funnest (real word), gayest parade I have ever had the privilege of witnessing.
Dublin city centre closed it's roads and opened its heart to celebrate diversity, mutual respect and sequined frocks.... and to honour the bigotry, ignorance and lack of intelligence that fuelled generations of  pointless suffering endured by the LGBT community.

I went with my daughter and her friend, met my son and his pal, spent time with one of my dearest friends sitting on a wall arguing over rainbow wings (they looked better on him), made a bunch of new friends..... and have been running on a high of super-charged love ever since. 
Spending the day inhaling an atmosphere energised by goodwill and support is the best antidote to a world that is often miserable, mean-spirited and paralysed by dogma.  

Pride is a living testament to the hope that love conquers all.

I couldn't help but realize that a parade of social misfits, same-sex couples and men in dresses delivered the good stuff that religion is supposed to, but doesn't.  
The irony also wasn't lost on me that a small bunch of christian protesters complained that Pride was an insult to God, while ignoring the fact that Jesus was a bit of a hippie who hung out with prostitutes, lepers, the mentally ill, women and criminals .... just about anyone living on the fringes of 'civilised' society.  
The Big J had no patience for an overbearing establishment who told people what to think, how to live and who to love (and we all know how that worked out for him).  
The very people who force their agendas in his name would have hated him back in the day.
If  JC was knocking around O'Connell street yesterday he would have been Grand Marshall of the Pride Parade, sticking two sequined fingers to the cruel stupidity imposed by organised religion.  

It's not a big leap to draw parallels between the LGBT community and our Autistic loved ones.
Both groups have been isolated, shamed, denied justice and reviled  (the most glaring difference being that our kids rely on parents and professionals to advocate on their behalf, while the LGBTers are dazzling in their ability to demonstrate effectively on their own terms.  In heels).

When I was a teenager in the 80s, special needs kids were as invisible as anyone LGBT.  They were removed from polite society in case they shamed us with their strange behaviour, or reminded us of our frailties and the capricious nature of humanity.
The thirty years between then and now has seen an unprecedented change in our society as the claws of religion are finally losing their grip, people are becoming more educated and social media has exposed us to bigger and better ideas.

About fucking time.

I'm proud of my autistic son.
I'm proud of my friends and family who are no longer afraid to love who they love.
I'm proud to have witnessed that malice and dogma is no match for love.

Pride is my new favourite deadly sin.

Saturday, 15 June 2019

Autism & the Alternative Trap

I originally wrote this for my blogger buddy over at Pendulum Physiotherapy, so I hope he won't sue me for copyright infringement for lashing it up on my own site today (you don't want to piss off a physio.... God knows what human origami they'll contort you into on your next visit if you do). 
It's a chat about the lure of the alternative, and feel free to add any stories you have yourself in the comments section x

We live in curious times.
We are safe in the knowledge that plague is spread by bacteria, and not witchcraft.
We know that soundwaves crackling across the airwaves, and not the cunning work of the devil, transports music to our radios.
We rely on doctors, and not the ministry of angels, to heal illness and injury.
These days, if Abraham tried to defend cutting his son's throat to appease a wrathful God as a test of his faith, he'd spend the rest of his natural in a high security unit for the criminally bewildered.  Luckily, God stopped Abraham in the nick of time... the Big G has quite a flair for the dramatic.  If he's ever thinking about a change in career direction, he'd make a great screenwriter.
Get thee to Hollywood, Jehovah.

But, it's the 21st century.
We've all been to school.
We're pretty enlightened, and the Old Testament has been shelved in a dusty, unused library along with tomes on alchemy, sorcery and mythology.

But it seems that despite steady progress in science and critical thinking, that our fascination with all things alternative has done nothing but grow.
You can buy a few healing crystals along with your weetabix on a trip to the supermarket.  Homeopathic tinctures are displayed with grave credibility next to paracetamol.
Aromatherapy oils bewitch us with promises greater than  just making your home smell better than a month-old ham sandwich (true story, involving my older son, poor food hygiene, and the use of under his bed as a teenage black hole... I think the third secret of Fatima and the remains of Amelia Earhart could be in there somewhere too).

When our heads know better, and there are acres of evidence discrediting quack remedies, it's puzzling that we continue to spend our time, energy and not inconsiderable money on them.  In a time when miracles can be explained with MRI scans and satellite images, we are still drawn to alternative remedies like moths to an expensive, but dishonest, flame.  So why do we fall for it?

I have a 14 year old autistic son, who has made my life harder and better than I ever imagined possible.
I am sleep deprived, anxious and depressed, yet I've never been happier.
I have fewer, but better friends.
My career is a distant memory, but I get to hang out with the best kids in the world.
The cracks in my marriage (which are in every marriage if you stay the course long enough) have been stretched and pounded with relentless force, but have not broken.
I am often lonely, exhausted and hopeless but am deeply grateful for the depth of love in my life.
I have less money to spend on making myself and my home look like a magazine photoshoot, but I am honest about who I am, and have a home with an endless supply of tea and coffee, if not designer decor.
Life is desperately hard and awesomely brilliant.

And some days are more hard than brilliant.

So, if  my son is having what I call an "autistic day", and somebody knocks on my door and says "hey, gimme all your savings, spray bleach around a lava lamp, feed your child nothing but corrugated iron and Goji berries, and I can magic away all the hard stuff", it'd be hard to restrain myself from dragging them inside, chaining them to the radiator and screaming "do your magic NOW!!!" while tearing off to the nearest ATM.
(btw, that 'crazy' stuff I just listed isn't a million miles away from many of the so-called autism therapies I've come across, just so you know).

So why, when we know better, do we continue to get sucked in by snake-oil salesman?

I can't pretend to have all the answers, but I think I've come across a few of them over my years of  trying to ensure that my son receives the best education and therapies available to him.

not a real doctor

First up, alternative therapies are easy.
Living with an illness, injury or disability is hard.
Taking medication and coping with it's side effects sucks.  Doing the physio, speech therapy, or Applied Behavioural analysis (ABA) is tiresome and slow.  Results are rarely rapid or complete.  And professional therapists will never massage your tired soul with lies.
On the other hand, an alternative therapist will promise quick, easy, expensive cures and will shamelessly lie through their teeth while selling you ionising foot spas to suck the autism out of your child (that's an actual 'therapy').
We will always prefer the easy option.  We're human.  But, if a therapy sounds too good to be true, it is.

As parents, we have to accept a large amount of responsibility for our child's progress.  We can't hand our Little Dear to an Occupational Therapist and say "fix him" while we spend an hour having a nice pinot noir in a book shop (my idea of heaven.... although Prince DJ-ing in a corner would  make it completely divine).  Parents have to get involved, attend the sessions, and do the work.  There is no get out of jail free card on this one. 
As with anything worth achieving in life, whether it's regaining health, weight loss, fitness, using speech, or learning a skill,  we reap what we sow.  It takes work, patience and tenacity to achieve the good stuff and as parents we have to accept that responsibility on behalf of our child.
The temptation to hand this over to an alternative therapist for a quick fix can be overwhelming, especially when we're at a low ebb. But they are our kids to nurture and to coax towards achieving their full potential, with the help of teachers and professionals, and nobody else's.  We lean towards quack therapists because we're tired, and the road is long, but it's important to recognise this and avoid it.

Where we're at in the grieving process makes us especially vulnerable to quackery.  When your child is diagnosed with a life-long disability, you grieve hard.  It can be difficult for other people to understand the pain and loss you feel, because your child is still here, after all.  But you grieve for hopes, dreams, a normal existence, your career, your marriage, friends, holidays, conversations, sleep, money, going to Lidl without a written schedule, trusting your child not to eat glass, no shit smeared on the walls, having a shower, remembering the names of your other children..... that type of stuff.  When you're chest-deep in all that, and somebody waves a shiny something under your nose and promises to make it all better, it's a test of character not to grab it and hold on for dear life.  It's pretty depressing that there are people in the world who will happily strip the shirt off your back while you're devastated with grief, but that's how it is.  One of the big reasons that we are drawn to quackery is that we're heart-broken and we want the pain to go away.  Of course, there's no avoiding grief; we have to go through it, and avoiding it by focussing on bleach enemas or restrictive diets will only delay our acceptance of our child's condition.  This helps no-one except the salesman, but it's an easy cycle to keep slipping into.

The last reason I want to touch on is marketing.
Alternative therapies are huge business, which are not above scaring parents into buying their product in  case their kid is missing out.
When you're new to autism, and you're trying to wrap your head around an entirely new language, meeting therapists you've never heard of and trying to separate the grain from the chaff, you're ripe as a juicy plum for being devoured by hucksters.
Everything scares you in the early days.
What if I prevent my child being cured because I didn't invest in a hyperbaric oxygen chamber?  
How can I live with myself if I don't suck out the autism-causing toxins with chelation?  
I don't deserve children because I'm not feeding them gluten-free, casein-free, hypoallergenic, extra-virgin, cold-pressed fish ears (or something equally ridiculous)?
Marketing works by figuring out our fears and poking at them with heartless, pointy sticks, and Autism parents have plenty of fears.

I think it's important not to beat ourselves up over being attracted by alternative therapies.  I love shiny crystals.  I give my kids fish oils.  I enjoy meditation.  But I know none of them will cure autism.
The best way forward is to read lots, talk lots and listen to the professionals.... and keep the shiny stuff to hang on your Christmas tree.

Thursday, 25 April 2019

Autism & Faecal Implants

There's a lot to like about getting older.
Despite having to run the gauntlet of anti-aging, anti-wrinkle, anti- 'No One Loves You Cos You're An Ancient Hag' lotions in Boots when I want to buy some paracetamol, the positives of aging far outweigh the negatives.

First of all, it's quite nice not being dead.
In the not-too-distant past, if men managed to side-step communicable diseases, occupational hazards like rolling around in asbestos, and malnutrition evoked disabilities, they got to enjoy fifty solid years of misery and squalor.  Meanwhile, if women were hardy enough to survive into adulthood, they lived til the ripe old age of childbirth. 
Fun times.
Vaccines, improved medical care, education and social care, while far from perfect, now enable most of us to live well into our eighties.
So even though it's in the economy's best interest to demonise aging as an (expensive) horror to battle against, the joke is on them.... because by the time we 'need' an anti-aging arsenal of AHAs, retinol and hyaluronic acid, most of us are wise enough to know that we don't actually need them.  A four quid jar of moisturiser from Aldi protects our skin as efficiently as an ungent costing the price of a house extension.... and you can use the money you've saved to rock some age-inappropriate clothes while flipping the bird to the anti-aging industry.
There is no magic ointment that will make me look like a sixteen year old again (by my calculations I now have three of those bitches screaming inside me), and if you believe that youth equals beauty equals lovability, you probably need to get out more and make new friends.

contains the active ingredients tears and self-loathing

Instead of being celebrated as a solid milestone, marketers have managed to convince us that aging is malevolent, unattractive and unlovable.  But, most of us aquire a little more wisdom, humility and patience with the advance of years, and paying for that with a few lines and grey hairs seems like a good deal to me.

(in the interest of public safety, please take note of an imminent awkward segue into a different subject using the most tenuous of links; please adjust your seating and make allowances for the fact that my autistic son has been riffing the same three lines from Postman Pat since 7am, and that I remain semi-coherent and vertical.  Go, me!)

So, there's a lot of shit written about getting older.
But that steaming pile of bum-waste pales in comparison to a truly out-there Autism 'therapy' I came across lately.

An article published by the Daily Mail (which is never racist, sexist or homophobic and prides itself on printing only accurate, non-sensational scientific research.... or is it the other way round?  I can never remember) relates that faecal implants "drastically" (quote) reduce Autistic symptoms.  They report that the number of kids classed as having severe Autism dropped from 83% to 17% by the end of the research, and suggest that the presence of abnormal gut flora can trigger Autism.
I must admit, I wasn't encouraged by the comments beneath the article stating that Andrew Wakefield needs an immediate, abject apology (and possibly a sainthood) and that protecting our kids with vaccines is the equivalent of injecting their eyeballs with uncut heroin (I may be paraphrasing)... but at the same time, it seemed like an area worth investigating.  So off I wandered into the websphere, brandishing a copy of the Daily Mail to protect me from science and reason.

Faecal transplants are used medically to treat complications of antibiotic therapy, where donor faeces, which has been screened for diseases, is introduced to the bowel during a colonoscopy (in layman's terms, someone else's crap is pumped up your poophole).  It sounds pretty distasteful, but it's an effective way of treating a debilitating side-effect.  But, I imagine because of the very tenuous gut-brain link that some people believe underlies Autism (there's no evidence whatsoever to support this belief), the procedure has been hijacked as a possible treatment for Autism.

In 2017, a very small clinical trial (with a sample group of 18 kids) was carried out to investigate if altering the gut microbiota affected gastrointestinal and autistic symptoms; the study demonstrated improvements, which persisted up to 8 weeks following treatment.  While this is something to sit up and pay attention to, another article points out that the sample group was too small (so the results can't be applied to the entire autistic population) and that data collection relied heavily on parental observation (which left it wide open to placebo effect, where unconsciously the parents may perceive behaviors that they wish to see, and not what they actually see).
As far as I can see, there was no control group, so the results had nothing to be compared against.... and it also meant that all parents of the participants knew that their child was receiving the active substance, which could skew their data collection towards false positives.
So, even though it was an interesting study, it's a good country mile shy of proving itself as a reliable treatment for Autism. 

As you might expect, there are no shortage of  online anecdotes crediting faecal implants with recovery from Autism, learning to levitate and speaking in tongues (although I may have been drunk reading these, I'm not sure).
It was a bit worrying to learn that online support groups have sprung up of parents advising each other on how to do a bit of DIY muck spreading of their own.  As well as making me a little nervous of eating food in those houses (blenders and cooking utensils feature heavily), homes can't screen for potential diseases or pathogens... and it seems inevitable that at some point a kid is going to suffer illness or bowel perforation at the hands of a crappy parent.
And, as ever, being distracted by an unproven 'therapy' means less time and energy is invested into treatments and education that actually work

So, the Daily Mail is a little premature in hailing faecal transplants as the new wunderkind of Autism therapies, but  they were never shy about printing shit so no surprises there.

Monday, 8 April 2019

Autism & Ayurveda

It's funny what we find funny.
A sense of humour helps us cope with our darkest moments, so we can whistle past the graveyard of traumas, grief and broken hearts.
When I was a nurse, rolling our eyes at death stopped us being crippled by loss and allowed us to continue functioning in our jobs.
As a wife, I learned that mocking my husband's farts, grunts and nail-biting is a more socially acceptable alternative to beating him over the head with a short plank.... anyway, I kinda love him, and I'm too pretty for jail, so I mercilessly torment him instead.  It's much more fun.
As a mother, I mastered the ancient art of maintaining a poker face in response to appalled kids shouting "I hate you!!!", "you're not the boss of me!!!" and "I didn't ask to be born!!!".  First prize for laughing on the inside definitely goes to me.

Autism fits comfortably into the list of strangely inappropriate things to laugh about.
We really shouldn't laugh about it, but some aspects of it shock humour out of the maddest situations.... and I would definitely prefer to laugh than to become a martyr to misery.

The other day, a friend and I were chatting about the whole 'is your child autistic?' or 'does he have autism?' debate; we agreed that when your child is smearing shit on the walls it doesn't matter if you say "has autism", "is autistic" or "will happily lick magic markers til he vomits"....... it amounts to the same thing.  Getting cerebral about semantics won't stop you trying not to gag while you scrub the paintwork.
It's kinda funny that people will get indignant about wording; my son doesn't care, I don't care and the brown finger-painting on the wall definitely doesn't give a shit, so to speak.
A good rule of thumb is that laughter trumps vomit every time.

"mmmmm..... delicious"

Autism turns the whole illusion of living an orderly, steadily progressive life into groundbreaking comedy.  Your early career goals may have been incarcerated, eviscerated and incinerated... but maybe the chaos of Autism evoked an untapped talent you didn't know you had, or surprised you with a level of creativity that would have otherwise remained undiscovered?
It's quietly hilarious to think of the person I would now be if the hurricane of Autism hadn't made short work of all the pointless crap that preoccupied me; I would be more shallow, less compassionate and would live in a tidier world populated by normal, law-abiding moderates.
It's hard to think of anything more boring.
So I owe debt of thanks to Autism for making a mockery of the superficial, and filling my life with intriguing, badly behaved friends.... and for awakening the courage in me to create and live by my own values.

Over the years, Autism has slapsticked me with enough material to mortally wound my ego, my grace and my dignity.  My son has been a flamboyant nude trampoliner, a vocal defender of his entitlement to shoplift with abandon, and an enthusiastic supporter of the right to express his emotions through the medium of drama (mostly by having massive meltdowns in shopping centres). Wrestling with a naked, bouncing boy, or sitting on the floor of Pennys while he attempts to shatter glass with his screams, are guaranteed to relieve you of any delusions you might harbour that you're a classy, competent adult.  Autism parents are a sweaty mess of neuroses (although, maybe that's just me), but there's something liberating about enjoying the madness that Autism brings with it... when you learn to let go of the self-consciousness, there's a lot of fun to be had.

But little in the Autistic universe has made me laugh more than the seemingly endless parade of cures, miracles and quackery.  Every so often, I think I'll eventually run out of therapies to write about, but it's the gift that keeps on giving.

Ayurveda came to my attention a few years ago as a benign, well-intentioned healing system which aims to maintain balance between the mind, body and spirit (in the belief that imbalance leads to illness).  It's an ancient Hindu discipline which views each person as composed of five essential elements (air, space, water, fire and earth), combined with one of three life forces or 'doshas' (Vata, Pitta or Kapha).  A practitioner assesses your physical and emotional condition, your dosha and the balance of all your elements.  To redress any imbalances, the client may be prescribed massage, 'blood purification', medical oils, herbs, laxatives and enemas.
At this point, the notion of being benign seems to be grabbing a passport, a toothbrush and a one-way ticket to LaLa Land.  The circus of blood 'purification' never seems to end well.... and Ayurveda also seems to be more than a little bowel obsessed; it's hard to see how having nice, shiny intestines will make your artritis better.
But any shred of credibility Ayurveda may have been clinging onto has been soundly peeled away by it's promise to cure Autism.  I hardly need to say that there IS no cure for Autism, and that any promise of it is misleading at best, and dangerous at worst. Obviously, there's no scientific evidence to support Ayurveda as a therapy, never mind a cure, for Autism, and the articles I've read are based on 'gut feelings' and traditions.

It won't come as a huge surprise to learn that the FDA does not approve of Ayurveda as a therapy, and has banned many of the products it espouses... not least because 1 in 5 of them contain toxic metals like lead, mercury and arsenic.
Ayurveda is a waste of time and money, and the likelihood is that you'll end up sicker by the time you finish your 'treatment'. So, don't even.

You could bang your head against the brick wall of quack therapies ... or you could laugh and walk away.
It's a no-brainer.

Tuesday, 26 March 2019

Autism & Toxin Removal System (TRS)

In the last few years I've developed a disturbing affinity for detox therapies, with the same unhealthy affection you might feel for a troublesome wart that won't fall off, or a weird attachment you might develop towards the last guest at a party too jagerbombed to leave.
We're contrary creatures who sometimes miss the irritating itch when it's finally scratched, but that doesn't mean quackery, in all its guises, shouldn't be politely invited to perform illegal acts of indecency while being directed towards the door.
But no matter how often they're instructed to slope off into the wilderness and die, quack therapies resurface with sickening predictability.... like a tenacious dose of herpes, or a new series of Love Island (which are not mutually exclusive).

I keep foolishly hoping that people will finally understand that our liver and kidneys are the most advanced pieces of detox technology in existence;  shelling out for pricey tinctures and ungents produces nothing more useful than expensive urine.
We're literally pissing our money down the toilet.
Our abdominal cavity handily contains all the equipment we'll ever need to dismantle the compounds we don't need into molecules we can excrete... we've been happily doing it all our lives without needing external help.

So what is it about detoxing that lures us to surrender sense and reason like the Pied Piper of Pseudoscience?
We seem to be helpless to resist the urge to scour away all our sludgey innards, replacing it with pristine purity; there's a born-again virgin in all of us screaming to get out.

My feeling is that our affinity for detoxing in embedded in our ancestral DNA; every religious and spiritual discipline seems to express an element of cleansing and rebirth.... the notion seems to be important to our mental and spiritual health.
Maybe our drive to get the feels on with the Master of the Universe is what's exploited by the producers of detox therapies?  We find comfort in ritual, and hope in the promise of renewal, which the detox industry sell to us like commodities.  It's fortunate for them that they're unburdened by conscience; their sleep doesn't seem to be disturbed by selling false hope to desperate people.
Lucky them.

Also, a central tenet of the detox industry is that toxins make us fat, sick and stupid, and that using their product will effortlessly transform us from doughy, diseased airheads into the glorious love-child of Albert Einstein and Scarlett Johansson.
I suspect that the detox industry appeals to the tired, time-starved people we are;  it's much easier to spend a few quid on a box of crushed Tibetan snail shells  (infused with dewy lotus flowers harvested by Buddhist monks in the light of a new moon, obviously) than to eat less, move more and read a few books.
But becoming a genius god(dess) takes time and effort and it's so much easier to swallow a promising, if useless, remedy.

But, whatever the reason behind our continuing love affair with them, detox therapies are a hugely lucrative business; if they were based on something more than lies and deception, I'd have no issue with them... but they turn a profit by creating fear, promoting lies and luring frightened people away from therapies that actually help.  Quack therapies have a sinister edge to their comic silliness.... they can prove dangerous as well as pointless.

So, with heavy heart, I joined a Facebook page called 'Advanced TRS (Toxin Removal System) Detoxification' so I could check out this new kid on the block; TRS is a liquid  produced by a company called Coseva, promising to remove toxins from the body in a safer, faster manner than chelation (notwithstanding the fact that there is zero evidence to show that 'toxins' cause Autism, and that the removal of them cures it).  Before I even read it's claims, it's a given that anything that alleges to cure everything from Autism to infertility (and just about everything in between) is Fake News. There is no panacea that will cure all ills, much less cure Autism  (on a side note, I've been carrying out robust clinical trials studying the effectiveness of wine and chocolate as an Autism antidote, and so far it's had no effect on my son, but I feel a whole lot better.  I will also selflessly continue to collect data, because I'm thorough like that).
Using sciency sound-bytes like 'nano-technology', 'zeolites' and clinoptilolite' do nothing to cover up the absence of evidence supporting its use.  Gushing testimonials about reversal of autistic symptoms are heavily peppered with "OH MY GOD!!"s and "I CAN'T BELIEVE IT!!!"s, along with the zealous use of exclamation marks, just in case you're a little hard of hearing. ... but yelling lavish praise is a faint distraction from the fact that there is no empirical evidence holding up their loud claims.

In barely discernible print at the bottom of the Coseva website, is a disclaimer stating that they have not been evaluated by the Food & Drugs Administration and that they do not intend to diagnose, cure, treat or prevent any illness.  Maybe they just don't notice that their product is sold specifically to treat Autism, and that their facebook page is rabid with gratitude for improving children's symptoms?
A paper published last year demonstrating the safety of zeolite (a main ingredient of TRS) is a pretty big leap from proving it's therapeutic use; you might as well hand your child a nice Mars bar (as it's safe.... apart from the whole diabetes and dental decay thing, maybe) and keep your fingers crossed that your kid will stop stimming.
Your kid will also adore you....
....while all his teeth fall out.

If biochemistry is your jam, you can check out a good article here  explaining why zeolites (and therefore TRS) don't treat Autism; although, personally, I'm just a little disappointed that the word 'zeolite' is misplaced in yet another tedious Autism scam.... I think it'd better describe a member of a remote religious cult who wears clothes made of  bulrushes, howls at the moon and wrestles grizzly bears for a bit of fun. Using it to describe an inoffensive, but useless, molecule is a bit of a waste.

So, the frustrated affection I feel for TRS means I'd like to place it in a Home for Bewildered Detox Therapies, and maybe visit it at Christmas and Easter to see if it's playing nicely with the other residents.
It's getting to be an awfully crowded house.

Sunday, 10 March 2019

Autism & Astrology

If Autism and Astrology were kids in a playground, we'd expect them to hang out with totally different friends; Autism would buddy up with the earnest nerds who approach Minecraft with religious zeal, while Astrology would drift with a crew of vegan hippy chicks connected to the earth by a tenuous string of hemp and incense.
We'd expect them to play in opposite corners of the yard, only crossing paths to eye each other suspiciously in the canteen queue  (where Autism carefully ensures that the different food groups don't touch on his plate, and Astrology choses ethically produced organic quinoa and places it on a biodegradable plate composed of marsh rushes and guilt).

You'd be forgiven for thinking that the only thing Autism and Astrology have in common is proximity in the dictionary.

I naively believed that Astrology had long since been relegated to being a harmless bit of fun in the back of newspapers; that it's nothing more than a forgettable page filler to have a laugh over with a mug of coffee.
Last weekend my horoscope predicted that a dark, handsome stranger would present me with important news, and to expect a Big Surprise midweek.
It turned out that the dark man bearing news was my postman delivering the bin charges....
... and the Big Surprise was a giant floating turd thoughtfully produced by my son, which gamely resisted being flushed away for several days  (it hung around so long, I thought we were gonna have to adopt it and give it a name).
It seems Astrology predicts shit on many levels.

Astrology is pseudoscience which interprets the changing positions of planets and stars as having influence over life events and our personalities; some people take this a step further and believe that Astrology influences their kids Autism, and may even have caused it in the first place.

Pay attention class.
Several astrologers I looked into believe there is a 'Uranian' component to Autism, as this planet controls innovation, radical changes in society, new ways of thinking and emotional detachment. They suggest that "Indigo Children", born in the decades leading up to 1995, are strange, intuitive, strong-willed and rebellious and that their appearance coincided with the increase in the incidence of Autism.  Indigo Children arose during a time of astrological upheaval and paved the way for  Crystal Children, born from 1995 onwards, who are 'old souls' with telepathic abilities.  They are often diagnosed with Autism as they are late talkers with developmental delays;  astrologers believe they are using different ways to communicate, and that Crystal Children are here to ferry us into the next phase of humanity's spiritual growth.

So your kid doesn't have Autism.
He's just a funny colour.

Apparently up to 25% of Americans believe in astrology. 
This is no stranger than believing that a magic baby was conceived of a virgin mother and an absentee father (who, in fairness, was probably extra busy, because of the whole God thing) and redeemed us of our sins by being tortured to death (how exactly does that work?)..... but then had the last laugh by reanimating and totally freaking out the Romans (oh, and he also did some cool tricks along the way when the booze ran out and that time he walked on water.  He was a laugh).
I suppose the point is that we'll believe any old unproven story if it suits our narrative, but calling your kid a Crystal Child won't stop him bouncing off the walls and eating firelighters.

Changing the name of something does not change the something.

Sean Combs changed his name (in chronological order, coz I take my research v seriously) to Puffy, Puff Daddy, P Diddy, Diddy, P Diddy (again), Sean John, Swag and Puff Daddy (again).  Signing his cheques differently, however, does nothing to hide the fact that his music would be best listened to underwater where no one can hear you scream.
Autism is Autism, and Sean Combs is.... overrated.

The influence of astrology on our personalities and life trajectories has been soundly debunked here and here...  and in about a thousand other places if you have a bit of idle surf time.
The Barnum effect (which is the use of deliberately vague statements which could readily apply to anyone) applies perfectly to Astrology to give the illusion of being scarily specific.
So when your astrological profile tells you that Librans have a deep need to be liked by others, and you go "OMG, how can they tell???", remember that the other 11 signs also prefer it when their peers don't dowse them with petrol and play with matches.
We all like to be liked.

But my favourite quote relating to Autism and Astrology needs to be read aloud;
"It is Uranus which opens the door to Eureka type experiences"...
.... the unbreakable link between Astrology and shit just won't go away.

not even sorry

Thursday, 21 February 2019

Autism & Stimming

Stimming could become this season's new grey.

It's one of those things we've never heard of that would improve our lives immeasurably.... kinda like Bikram yoga, wheatgrass shots or washing your hands after using the toilet (although that last one may only apply to my sons).

Stimming is an obvious, observable sign of Autism and is usually the first thing that alerts passers-by that your child has a neurological condition, and is not squealing in a language only Flipper the Dolphin can decipher to make an ironic, anti-establishment point.

"fuck the po-lice"

Stimming is a seriously happy business; it's shorthand for self-stimulatory behaviour that includes rocking, flapping, spinning, flicking, head-banging, spinning objects, repeating words or phrases, rapid blinking and pacing, among approximately a hundred thousand other behaviours that are not considered 'normal'.
The list, like our children, is pretty much inexhaustible.
To the uninitiated, stimming appears puzzling and without purpose, but these apparently strange, repetitive and persistent expressions have an important function that, frankly, wouldn't go amiss in most of the general population.
If you have ever drummed your fingers on a desk, bitten your nails or twirled your hair, you're
an undiagnosed stimmer and need immediate intervention to rehabilitate you back into civilised company.  While this may be (a little) extreme, these are small, socially acceptable, idiosyncrasies we use to help calm us down when we feel anxious; an autistic person's stims can be seen as a proportional response to the anxiety of processing an overwhelming environment.
The difference between a 'normal' stim and an autistic stim is duration, intensity and social acceptability.

Spinning, or rocking, or whatever floats your sensory boat can regulate senses that have been jitterbugged into meltdown and can help claim back a little control in a disordered, frightening world.
If you're flappy and you know it, clap your hands.
It has also been suggested that stimming is used to satisfy hyposensitivities, or to stimulate the release of opiate-like chemicals to arouse pleasure; the jury is still out on a definite cause.
But regardless of the function, stimming is a strong enough feature of Autism to be included in it's diagnostic criteria.  You will not meet an autistic person who doesn't lick walls, twirl strands of ribbon or indulge in some sensory eccentricity that, if I'm honest, makes me more than a little envious.  My son only needs ten minutes on a trampoline, or a long shower, or a turbocharged scooter session to access his Happy Place. It takes me a netflix binge and enough wine to risk a two day hangover to get even close to that kind of emotional equilibrium.  A bit of audacious bouncing or bold adrenaline seeking seems like an intelligent alternative to liver failure, so it's a trait we stand to learn a lot from.

It's obvious to most of us that if the only cost of having a calm, centred child is to occasionally surprise strangers, then it's a price worth dipping into the Christmas fund for.  It's wickedly funny to see someone do a double take when Fin stretches his mouth wide enough to inhale a small planet (plus several of its moons and maybe a few random satellites), or bursts into an enthusiastic rendition of  'Santa Claus Is Coming To Town'.
In February.
In Polish...
... and even though now that Fin is a handsome, 6ft tall young man, his facial tics are more likely to make strangers wonder if he dropped a tab of MDMA, instead of thinking "hmmm... that boy's unusually pervasive behaviours are indicative of a developmental disability".  Luckily, I've never been bothered by the stares, and my son is blissfully immune to the judgers, so we get by quite happily without fretting over rubber-neckers.

But even though, on the whole, it seems perfectly sensible to allow autistic people use their stims to help them manage an unpredictable world (and people who try to extinguish these out of embarrassment, or trying to impose 'normality', deserve to be incarcerated in a correctional facility where waterboarding and listening to Justin Bieber are mandatory), there are times when stims are undesirable or even dangerous.
It's obvious that steps should be taken to teach a child to chow down on a chewy tube instead of  his own delicious fingers, or to seek out 'head squeezes' instead of bouncing his head off the nearest wall  (no matter how hard the child's skull is, the wall always wins).  This would seem self evident, but some parents need to be reminded that trying to stifle a child's coping mechanisms does not end well for anyone; the parent is only stoking their own intolerance and the child's mood and behaviour will inevitably deteriorate.

So, even though stimming is seen as a trait of Autism, I think it has all the hallmarks of an excellent therapy that could be generalised with good effect (and a few raised eyebrows) to the entire population.
Next time you see me hypnotised by a weaving loom, or folding all the towels a certain way (because I'm not a neanderthal... and definitely not because it makes my eyeballs itch if they don't face the same way), don't stop me.... I'm reaching for my Happy Place.

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.