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.

Except...
.... 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
fact


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.





Saturday, 27 October 2018

Autism & Chemical Castration

Bet that title caught your attention.

I did more than a double-take myself when this popped up on my latest trawl through autism therapies; I immediately assumed/hoped that it was a bizarre idea floated by some lone crackhead who earned his doctorate in the Josef Mengele School of Medicine, and that it never really caught on.  I mean, no matter how hard of a time you're going through with your autistic kid, you'd never actually consider dosing them with drugs normally used for cancer treatment in the hope that it would cure their autism.... would you?

Unbelievably, this is precisely what hundreds of families exposed their autistic kids to in the USA in the early noughties.

We all have dark moments where we'd do anything to experience a life more ordinary; when you've cleaned up shit once too often, or  had yet another row with your husband over something stupid just because you're almost insane with exhaustion, or when your sense of self is so remote that you have no idea what happened to the person you once were.  In these moments, all of us have wondered just how many lines would we cross if hope of an autism cure lay beyond the conventional.
It's these low points that bottom feeders capitalise on, as quack therapists strip the shirt off your back while you're in pieces on the floor.  If Karma is as big a bitch as I hope she is, may these 'therapists' spend eternity locked in a windowless cell translating Ullyses into ancient Aramaic, where their only friends are their own pubic lice.

Puberty is tough... and when you lash a hefty dose of autism into the mix it can become a pretty exhausting mess of tantrums, facial hair, body odours and hormones.  Our door frames have all been tested beyond their limits by the amount of times Finian tried to slam them off their hinges (FYI, it seems that even if the rest of our house disintegrates around them, our door frames will survive nuclear war, a zombie apocalypse and an autistic teenager... go, doors!).... but to delay it by inducing chemical castration is a bridge most of us would balk at, even on our darkest days.


Plums;  Just say "No!" to drugs

Dr Mark Geier and his biologist son David were zealots in the (now discredited) campaign to blame thimerosal in vaccines as the cause of autism.  They were big fans of chelation (a potentially fatal procedure used to remove heavy metals from the blood; normally used for acute poisoning) to remove this mercury-based thimerosal, and thereby cure autism.  Chelation has long since been proved useless and dangerous as an autism therapy, but instead of bowing to science, the Geiers claimed that testosterone binds to mercury, making the mercury difficult to expel from the body.  They claimed that autistic kids already have too much testosterone in their bodies and were undergoing precocious puberty because it was impossible to chelate the mercury out of them effectively.  Got that?
Good, because I don't.
Their 'science' seems very much based around desperately shoe-horning a discredited theory into some misshapen hypothesis, in the hope that the faith they invested in the evils of vaccines would not be shattered.
They touted their business at the super-quack conventions promoted by those who view autism as a biomedical disorder, like the strident Defeat Autism Now!!! (with extra exclamation marks because we all like to be shouted at) among others.  They had no problem attracting a steady stream of desperate punters using their pseudoscience.
Never mind that it was inhumane, unreliable and crazier than sugar-loaded toddlers in a ball-pool; they ran with it with all the zeal of born-again christians on judgement day.  The Geiers decided that injecting kids with a drug called Lupron (normally used to block testosterone in hormone-dependent tumours) was a great idea; that removing testosterone from the autism equation would prevent mercury becoming super-toxic, and would magic it all away.
Because  they wore white coats, and that's how science works.

For a number of years in the early 2000's, the Geiers charged families tens of thousands of dollars to treat their kids by chemically castrating them.  They opened eight clinics in six states, and formed their own review boards to side-step those irksome ethical issues and conformity to regulations.  After three years of performing 'medicine' frighteningly reminiscent of Nazi experiments,  the Chicago Tribune investigated them and exposed them as the hucksters that they were; a paper they wrote promoting the use of Lupron was withdrawn.  Unbelievably, though,  this did little to diminish business, and the following year The Guardian  reported that the Tribune's investigation barely dented demand for chelation and Lupron, and the Geiers remained as popular as ever.

Thankfully, though, by 2013, Dr.Geier's medical license was revoked in all American states and he now works as a self-employed geneticist (the picture in my head of a Marvel arch-villain is a little too clear).

The whole sorry tale is a sad reflection of the inability of some people to accept and cherish our kids  as they are; that some parents would rather arrest their child's normal development and pay the price of a house extension than to roll their sleeves up and get busy with Speech Therapy, Occupational Therapy, education and ABA.  It's also a sickening exposure of the people willing to exploit the grief of others.
I'd like to hope that we've moved away from this type of thinking, but knowing human nature, I think there'll always be an element among us willing to pay any price to acheve the 'perfect' child.



Thursday, 25 October 2018

Autism & Auditory Motor Mapping

Auditory Motor Mapping Therapy (AMMT.... coz there's zero chance I'm gonna keep typing out that mouthful) sounds like something you'd plug into a car in an upmarket garage; maybe to diagnose the reason behind the strange rattle in your biofuel-driven, WiFi linked surround-sound system... or maybe to assess why one of the eight thousand pilot lights on your Starship Enterprise dashboard is feeling a bit precious.
Not on my car though.
My car is held together with blue tack and good faith, and the only thing I need to diagnose an issue with it now is a pair of functioning eyes.  I suspect an exorcist would make a better job of fixing it than a mechanic.
I think if I tried to plug anything into it, that the delicate balance of hope and desperation that binds it together would be shattered and it'd disintegrate into a neat pile of rust.
(And blue tack)


I gotta improve my parking skills



But AMMT is not about cars, which is kind of a shame, because once when I told Finian that I loved him, he responded by telling me that he loves Ford Focus B Max (it took a few pounds of chocolate and a small lake of malbec to get over that one).
Cars, and their make, model, registration number and the precise mechanics underpinning the sequence of their hazard lights, rock Fin's world  in a way nothing else can..... not even maternal love apparently. Not that I'm bitter.

But AMMT is all about music and movement, so finding a therapy that involves cars will have to wait for another day.

AMMT is a slow burner that has been quietly building up a small body of evidence to support its use over the last few years.  It works on the concept that children who regularly play music have a larger corpus callosum, and frontal, temporal and motor areas in their brains, as compared to kids who don't play an instrument. An increase in the volume of fibres that connect these areas has also been shown to improve speech in adults with aphasia, so it's possible that increasing the size and connectivity of these areas would produce a similar benefit to autistic people with limited or no speech (got that?  I'll be asking questions later).

AMMT sounds like great fun for kids.  It involves singing, motor activity and imitation while using tuned drums.  It's highly technical and is definitely not a therapy you can download from YouTube and teach in five minutes, but in the right hands could be one of those therapies in which the child is learning while having the craic.
The research I've come across seems to indicate that it benefits kids who are deemed 'more verbal' than 'minimally or non-verbal'  and that AMMT will strengthen connectivity within the brain and so improve speech.  Maybe the fact that it mostly benefits this subgroup of  'more-verbal' autistic kids is the reason that it doesn't appear to be more mainstream.  Because I never came across it before, I don't know if it's something that your Speech Therapist will be familiar with, or if it's tricky to access.
There are plenty of online articles about it, if you want to read more about it, and it really seems like there's no downside to it.  It's fun, it promotes turn-taking, waiting, imitation, motor skills and verbal development regardless of whether it makes your child's brain light up like the national grid.  There's just something magic about music that makes the world a better place just by doing it's funky thing.

Music has been used as a therapy for autism in many incarnations, and there is certainly some proof that AMMT helps... although ironically, reading so much about neurology has kinda roasted my brain and I think I'll have to lie down in a dark room for a few hours to recover.


Thursday, 18 October 2018

Autism & Art Therapy

In a parallel universe I could be a brilliant artist; the only caveat required would be that stick men are sublime pieces of beauty, and that doodles of stars and hearts would represent the inner workings of my tortured artist's mind.  My irresistible leaning towards retina-scorching shades (with optional glitter) would be revered as cutting edge, instead of being accused of causing week-long blinding migraines.  My experimental methods of approaching art (usually a little drunk, and with both eyes shut) would be celebrated as being avant garde, and beardy people would scratch their chins and worry about understanding the true essence of my talent.

But in this universe, I'm just kinda crap.

I can colour between the lines like a pro, and have even been known to add rude bits to my stick people so you can tell if they're male or female (toilet humour NEVER goes out of style), but so far the National Art Gallery have declined my calls. 
They don't know what they're missing.

But art is a pretty universal thing, and I get to enjoy it, even if I don't understand it and can't create it.
No-one will argue that art is fun, creative and expressive, but when I saw it being touted as an autism therapy, I have to admit I did an eye roll that allowed me to take a long, hard look at the back of my skull (which was a bit disappointing btw.... not a scrap of glitter or day-glo orange to be seen).
Everything is an autism therapy; from hanging upside-down on the  washing line to playing dodge-the-rabid-cat with the family pet (so I'm told, never tried these of course... and my team of lawyers will back that up).  Surely art can just be art, without being packaged with a few sciency soundbites and marketed as a cure-all?


my legal team


Well, it seems that art therapy is actually pretty cool.
The list of things it can help autistic people deal with is fairly impressive; planning, sharing, turn-taking, fine motor skills, group work, dealing with sensory issues, encouraging imagination, calming,  communication, self-esteem, developing a sense of self, helping social skills... all as well as having a bit of craic.
As well as lots of online stories about how art therapy is cooler than the Fonz in a freezer, there are a small number of research articles and case studies available to show that even my representations of humanity as a series of matchsticks with anatomically incorrect genitalia are of some value.  One study concluded that art therapy fosters a reduction in 'problem' behaviour, decreased internalizing behaviours and reduced hyperactivity scores.  Another study found that autistic kids did not make developmental gains with art and music therapy, but that they did make behavioural gains. It's an area that would benefit from a lot more large-scale studies, if only to promote its use as a mainstream therapy; it really seems to help.  At worst, the most harm it can do is create a mess that looks like a 70s disco exploded on your dining room table.  At best, it can help your child make a bit more sense of the world.
On a personal level, Finian is really proud of his interpretation of Autumn as a series of brown squiggles; I can't tell if I'm looking at a Dali-esque masterpiece or horse toilet paper (I'm not an artist; see above), but it gets my boy chatting about something he created.  Never mind that there's something close to horse shit pinned to my fridge, it's pretty awesome that he has overcome so many challenges to produce such an interesting turd. 

So, art therapy is in; even if it sometimes looks like crap, it's not actual crap.  Lash it up on your fridge with pride, and enjoy the fact that, for once, it's good to talk shit.







Tuesday, 16 October 2018

Autism & the Mirror-Neuron Theory


I wrote this post in May 2012, when Finian was 8.
I still have that mac.




If I was pottering about in a giant field with one small hole in the middle of it, guess what would happen to me?

No prizes to the person snoozing at the back of the class who guessed correctly that I would be helpless to avoid falling in.
(You can go back to sleep now.)

Let me explain.

I was in a bookshop the other day, one of my favourite places on the planet to be.
While normal people were happily browsing through the Hunger Games, or picking up the latest vampire bonkbuster, I was  furtively scanning the science section wearing my dirty mac of nerdiness.




I am afflicted by a fascination for all thing sciency, but tragically do not possess the brain power to make any sense of it.
I think it's partly the hope that life, the universe and everything can be explained with a zippy little equation, but mostly it's that I just like science.
It's just unfortunate that I feel the need to hide my physics books beneath copies of Hello magazine in case someone asks me a question and my brain explodes.

So I was leafing through a book about neuroscience, and how plastic and surprising the the cauliflower between our ears is, when I came across an entire chapter dedicated to autism.
The author discussed  the mirror-neuron theory, which I had never heard of before, and the more I read, the more it seemed like the answer to everything.
I was frozen in my tracks, like a geeky little rabbit hypnotised by headlights.

A  few years ago I learned the valuable lesson of avoiding most books concerning the 'A' word, as they tend to lead to a cascade of speculation, blame, and false hope.
I learned to accept and embrace my gorgeous little boy for all that he is.
But I was sucked in like a big, suckery sucker and quickly stashed the book beneath my copy of Cosmo (which was berating me for not looking like a sulky supermodel while having multiple orgasms... but I'm just too tired for all that) as I legged it to the checkout.

I allowed a little seed of hope to grow in my belly and hushed the little voice that whispered if this stuff is true, how come you never heard of it??

I read the book, and figured that the Great God Google in the Sky would know all the answers.
A quick search showed that although the theory showed some promise, the findings couldn't be reliably replicated so it has joined the other legions of Autistic Red Herrings (which is a retirement home for bewildered theories, some madder than others).


I had done it again.
I had fallen down the magic rabbit hole of searching for a reason for my son's Autism, when I know that the reason doesn't matter and is just a waste of time and emotional energy.
My time is much better spent loving every quirky minute I spend with him and dealing with his problems, rather than falling down autistic rabbit holes (they exist, OK?).

It's surprisingly hard to stop living in the future though, maybe especially as a special needs parent, when fears for our child's future welfare walks every step with us.

As part of managing my depression, I have educated myself about mindfulness, which re-trains you to live in the here-and-now and to deal with the overwhelming intrusive thoughts that characterize depression.
It's harder than it sounds, but is worth the effort (even for non-loonies) as it helps us to see that life as it is now is just as it should be.
I also get this perspective by going to the gym, when my intense focus on breathing and rep-counting hush the intrusive thoughts until the endorphin rush kicks the low mood out of the playing field.

It's a nice way to feel, as opposed to wanting to chew my own leg off.

Except in the length of time it took me to read a chapter in a  (science, shhh) book, I forgot all this.

As my fellow loony Britney said "Oops I Did It Again".

It seems like a million years ago since I got excited about identifying a single cause (and ergo a treatment or  even an ohmygod cure) of Autism, and it annoyed me that I was sucked back into that state of mind so neatly, so quickly.

There's a fine line between optimism and delusion, and you can't walk it when you're tumbling down a rabbit hole.

Next time I go to a book shop I'm buying knitting patterns.


Friday, 5 October 2018

Autism & Ecstacy

When I was a nursing student in the early 90s, ecstasy was passed around like communion bread at a particularly frisky catholic convention. No self-respecting rave or club was complete without the holy trinity of cigarettes, booze and drugs, mixed against a backdrop of sweaty techno.  Ecstasy (like god) was everywhere.


Got my seat picked out in hell



Despite media portrayals of nurses as martyred, altruistic angels, our halos are pretty tarnished and there's a fair few feathers missing from our wings (probably lost at dodgy parties and sticky student apartments).  Nurses are as messed up and freaked out as the people we're treating... we just like trying to make people feel better while we're all falling over ourselves trying to make sense of the world.
Nurses are a funny lot;  we can have a cigarette at breaktime and return to care for a patient with end-stage lung cancer.  We can be fastidious in our care of a teenager in drug-induced multi-system failure, and see no harm in dropping acid tabs at the weekend.  We can witness men bleed out from esophageal varices (varicose veins above the stomach, caused by alcohol-induced liver damage) and think nothing of going on a bender that George Best would shy away from.
I'm not suggesting that nurses are a bunch of degenerate smack-heads, but we're just as human and fallible as any other profession, and can buy into the belief that bad stuff is shit that only happens other people.
I hasten to add (in case my mother is reading) that I never did any of these things  (.... actually the sad truth is that I really didn't... I'm one of those unfortunates marked to always be caught if I did anything wrong... instead of blowing off a bit of steam I'd become a cautionary tale with a massive guilt complex, so I left the reckless stuff to more daring souls).  I have a lot of stuff to catch up on.

Ecstasy was a big part of the drug scene when I was a student and (apart from killing the odd person or landing them into my ICU with hyperthermia or seizures), mostly did nothing more dramatic than cause people to feel like a loved-up jitterbug.

So, when I read about it being used as a potential therapy to treat autism, I thought "y'know, my life is hard enough without encouraging Finian to jive with crystal rainbows while getting touchy-feely with the postman.... maybe I'll give this one a miss".

But cynicism is lazy.  It's thoughtless and judgmental at best, and at worst it can preclude learning and maybe make me blind to a potentially helpful therapy.
When I look at a therapy I have no experience of, I try to be sceptical, but not cynical.
Not long ago, I wrote about extracts from cannabis (not the rock n' roll component, sadly, just a well-behaved compound within it) that is successfully treating seizures and is currently being looked at as a possible therapy for autism.  My initial reaction was that someone was hogging the bong a little too long; but it turns out that my knee-jerk reaction was misplaced, and cannabis extracts show actual promise (further research pending) for helping our kids manage the hard stuff.

So I fired up Dr Google and did a bit of cyber digging.

Ecstasy (aptly often called E) induces a state of euphoria, empathy and energy about 30 minutes after being taken orally.  It has no current medical use; initially it was hoped it might aid disinhibition in psychotherapy, but I imagine that tripped out love-bugs who just wanna groove, maaaan, don't get the most out of therapy.   It can cause agitation, increased body temperature, dehydration, palpitations, bruxism, lockjaw, paranoia and sleep difficulties.... oh, and sometimes an abrupt case of death (bummer).  A regular user can build up a tolerance to it pretty quickly, so will need to take increasing doses to achieve the same effect.
Apart from all that, though, it's grand.

An article here suggests that ecstasy can help autistic adults who suffer from social anxiety, but I don't imagine that anyone off their face on E Bombs will be too concerned about committing social faux pas.  Eleven participants were selected to receive either ecstacy or a placebo, and not surprisingly, those who received the active drug experienced reduced social anxiety.  The sample group is small, there is no mention of a control group and there is no discussion of short or long term side effects; but at the same time anything that might help people whose lives are crippled by anxiety is worth a look, and maybe a much bigger study would shed more light on it.
However, another article criticises the promotion of ecstasy as a potential therapy, discussing it's proven neurotoxicity, leading to long term cognitive and physical decline.  They point out that it's media image as a love drug conceals the fact that it is a dangerous chemical with no safe limit in humans, and that testing it in autistic people who already have "disorganized, misplaced and irregularly shaped" neurons is especially dangerous.
Another very small study in 2016 showed a positive outcome for reducing social anxiety in autistic people, and reports no side effects (short term, at least).





These studies are obviously too small to apply to the general autistic population, and on the strength of what I've been reading I won't be popping down to my local rave to score a few scooby snacks for Finian.  For each article or paper cautiously hinting at promise, there is another saying it's all the work of  the AntiChrist and we're going to hell in a handcart for even thinking about it (although I may be paraphrasing).
Research has a long way to go before we're even close to considering ecstasy as an autism therapy.
It makes great headlines, but inducing my son to dance with purple elephants while licking the cat doesn't sound like a winner to me.
Especially not for the cat.

Thursday, 4 October 2018

Autism; Love Hurts

Here's a very short post from a previous blog four years ago.
It's an observation of how both draining and exhilarating it is to love someone with autism. 



First posted August 2014

It's quite an experience to feel polarized emotions towards the same person in the same instant.

I have a gorgeous little boy who cuddles me with every ounce of his high-octane love, while raking tattoos into my shins with the sabres that seem to have replaced his toenails.

He disarms me with his open grin while lobbing my Louise Kennedy Crystal off the top of a bookshelf
(crystal explodes, by the way).

He liberates my rabidly protective Momma Bear while depriving me of sleep, friends, a career and my identity.






In the same moment I want to scream white-hot rage while shielding him from every sling and arrow life can hurl at him.

Whoever said "love hurts" was writing more than a cliché.

Saturday, 29 September 2018

Autism & ABA 2.0 (this time it's personal)

I'm not entirely sure why the human race isn't extinct.
Despite our best efforts to poison, overpopulate and radicalise ourselves into oblivion, we're still clinging grimly to this beautiful, nutty blue marble of ours.  I'm wondering if it isn't our very contrariness that makes us incapable of dying, when really we should have checked out a long time ago.
We don't just bite the hand that feeds.... we tear the arm off at the shoulder and feed it through a woodchipper before sticking a band-aid over it and telling it not to be such a big cry-baby.




We've mangled the very environment that gives us life, and refuse to believe in climate change.
We've created vaccines and then won't give them because a hyped up lie is more appealing to us than empirical evidence.
We're living longer than ever, but think over-population, pollution and a ticking time-bomb of social issues are something our great-grandchildren can worry about.
But even though plagues and famines have made game attempts at eliminating us, and we enthusiastically assist our own downfall by manufacturing wars, we still stubbornly persist.
Like a human-shaped barnacle. 
Or a yeast infection.
We just haven't gone away, you know.

When I last wrote about ABA here, I talked about how it's been key in improving the quality of my son's life, despite it's questionable beginnings.  No-one will argue that it's early reliance on using punishment to avert undesirable behaviour was Not A Good Thing (plus, it didn't work).  But, in it's modern incarnation, ABA has evolved into a child-centered, kind, well-considered method of education.  We have used it to help Finian with toilet training, with road safety, with helping him to sit long enough to learn, to reduce self-harm and aggression, to develop social skills like eating with us, to sleep in his own bed, to reduce absconding, to cope with getting his hair and nails cut, and to develop waiting and turn-taking skills, among many other behaviours.  I have absolutely no doubt that without ABA, Finian would not be the happy (well, as happy as any fourteen year old cloud of testosterone can be), funny, crazy kid that he is.  We can function better as a family now and Finian is learning to manage his emotions and to regulate them himself... no mean feat for a child who used to have a meltdown at the Go Compare ad, and who lived under lock-down in his early years because he was such a danger to himself.

But I'm not an apologist for ABA, and I'm not trying to convince you that it works on the strength of my single anecdote.  I'm not an ABA therapist and I only use a very simplified version of it at home, when I write schedules on the back of envelopes and stick reward charts to the fridge (the expert stuff happens at school). 
All you need to do is google a phrase like 'the effectiveness of ABA' or 'proof that ABA works' to generate enough research material to show you (with data that can replicated in other studies) that it does what it says on the tin.
It works, it can prove it works, so what's not to love?

Over the last while I've become aware of a growing backlash against ABA.  Because we've had such a good experience of it, this caught my attention and I've read through a number of on-line campaigns and groups claiming that it's a cruel, controlling, personality-stifling, abusive therapy.  I attempted to engage (briefly) with one group but left as they got nasty and personal pretty quickly.
I just can't get to grips with why people would try to dismantle a therapy that works.
I have no doubt that individual cases of ill-treatment happen... any therapy, in the wrong hands, is subject to misuse.  But this is a reflection on the individual therapist, and not on the therapy itself. 
I wonder is there some perverse part of our psyche that won't allow us to accept the good stuff ? Is there some strange quirk in our DNA that would have us deny our kids protection from deadly diseases on the unfounded claims of a discredited doctor?  Or decide that a road-tested therapy is the work of the devil because of it's shady origins?  Are we so contrary that we'd prefer to ignore something proven to help our kids, just because we can?

It genuinely baffles me.
I can only hope that most parents can see past the vitriol and the unfounded accusations, and rely on empirical evidence (a rarity with autism therapies), as well as their own experience, to make an informed decision about their child's education.  Maybe the backlash I've come across is a storm in a teacup, but it'd be a real shame for something that works to be damaged by senseless shape-throwing.

















Wednesday, 26 September 2018

Autism & Attention Autism

In this crazy world, attention is currency.
You may have composed an arresting piece of music, written sublime poetry or carved a stunning work of art from a chunk of bog oak, but our culture dictates that unless it is brought to the attention of the masses with the crude hammer of advertisement, then it's all for nothing.  There is little value placed on creativity for the sake of creation.  Art is sugar-coated with attention-grabbing tricks to make it appealing, and we are tricked into believing that unless it is popular (and saleable) that it is worth little.  Our attention is assaulted with hype, notoriety and scandals and we get lost in the bells and whistles, and lose focus on the important stuff beneath.
The hype becomes reality and the good stuff gets lost.
In the middle of it all, our precious attention is diverted to nonsense.

I imagine, early humans needed to focus their attention on survival; on finding food and keeping safe. They didn't feel less than adequate because their thighs were lumpier than Rihanna's (airbrushed) legs, or because their cave had an unfashionable postcode.  They were quite happy to raise families, wear bearskins, and not get eaten by lions (well, I imagine.... I know I have a few miles on the clock, but I wasn't actually around back then, no matter what my kids believe).  We no longer need to focus so much attention on avoiding death (unless you're hanging around Dundalk town square in the wee hours of a Saturday night... then all your survival skills come in remarkably handy), but our modern society has capitalized on this gap by dragging our attention away from simpler preoccupations to tricking us into believing that we'll die without the latest iPhone or  designer handbag,
I suspect we left a fair chunk of our mental and emotional  health back in the caves.




Our world is over-stuffed with things jostling for our attention, each louder and gaudier than the next, and we wonder why we're all so stressed and anxious.  Throw autism into the mix, with it's difficulty in filtering out the white noise, and the ability to pick out the important stuff from that cacophony of over-stimulation is tested to the max.

Imagine you're trying to read a word.
Most of us can focus on that word without too much difficulty.  We filter out the words around it, the smell of the book, the movement of other kids in the classroom, the sound of cars two streets away, the need to keep moving to maintain balance, the changing light as clouds scud across the sun, the abrasion of sock seams against skin, birds outside the window, the sound of your own breathing, the teacher's perfume, the weight of air against your face, the need to dig your fingers into your knees so you can check where your legs are... just reading this is exhausting.
Neurotypical people can block their focus on these distractions as easily as pressing 'decline' on Lusty Linda's request to follow your Instagram account.... unless Lusty Linda is your sister...  or you feel she's a kindred spirit and you hope to develop a deep, intellectually satisfying relationship with her.  Not judging.
Then add in all the craziness of an over-loud, over-bright environment, screaming for your attention.
Now imagine you have autism, with a sensory processing disorder as a side-dish, and that stew of sensory input is churning inside you, along with the word you're trying to focus on.  And we wonder why our kids become exhausted and frustrated and have meltdowns.

Some education methods, such as TEACCH, work by dialing down the environmental demands on our kids.
Others, such as Attention Autism, approach things differently, by presenting a learning opportunity as something absolutely irresistible, something so arresting that the child's entire attention is focused on it.
Attention Autism, developed by Speech Therapist Gina Davis, uses the typical strengths of an autistic learner, such as strong visual skills, love of routine and a good memory and breaks learning down to four stages;




Stage 1 - The Bucket, to focus attention -   the group is shown a bucket containing exciting, attention grabbing toys.  This promotes shared, group attention.
Stage 2 - Attention Builder, to sustain attention - kids develop attention span as the leader shows visually compelling activities, such as messy art.
Stage 3 - Interactive game  (to shift attention) .  Kids participate in turn-taking games as demonstrated by the leader.
Stage 4 - Individual activities, to focus and sustain attention in a group, transition attention shift to individual work and then re-focus on the group to show completed task  The leader teaches the child a creative activity which they do independently and then show to the group.

Attention Autism teaches focussing attention, joint attention, turn taking, communication skills, transition, independence skills, spontaneity, working in a group, waiting and emotional regulation.
This is a heavy mix of education, but the cool thing is that the hard work happens while the kid is having a blast.
A research paper from 2012 shows that Attention Autism improved the concentration span and joint attention skills of autistic children.  Another paper found that the impact on communication skills was inconclusive, but mentioned that a longer study including more children would be worth doing. It's difficult to find research papers looking at it, but on a personal level, a handful of Speech Therapists and teachers I have spoken to recommend it as a teaching tool.... I know that this isn't exactly a standard research method, but I've always found that the therapists on the coalface of education can tell very quickly if a new method is a high-flier or a lame duck.

In a world full of cynical marketing, quack therapies and snakeoil designed to distract us from the good stuff, it's good to come across a therapy that is kind, fun and well-intentioned.  There are no ludacris promises of cures, but plenty of optimism about slowly improving skills.  It's good to find warmth and humanity, instead of resigned eye-rolling, and hopefully more research will soon emerge about its place in our kids education.