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.

Thursday, 20 September 2018

Autism & Drumming

I've always been a bit suspicious of drummers.
They try to be arty and make complicated comments about off-beats, flams and linear rhythms.
They speak of the alchemy of art and science being coaxed to life in their skilled hands.
They comb back their long, dandruffy hair into dodgy man-buns to lend an air of earnest gravity to their trade.
But they're fooling no-one.
The truth is, drummers are adults who are delighted with themselves because they've found a legitimate reason to batter stuff with sticks. 
My childhood fixation on Animal from The Muppets may have prejudiced my opinions a little, but  drummers seems like a happy, hairy sorta bunch who won't murder you as long as you give them a tricky time signature to concentrate on.
Just look at the face of a drummer in action, and you'll see joy in its purest form.   They get to make music, release tension and pretend they're battering Donald Trump out of the White House, all for the price of one.  They're probably the chillest people on earth, even if they seem a little scary on the outside (again, using Animal as my point of reference here... I like to back up all my claims with in-depth research).
I'm more than a little jealous that I'm not a musician;  I'm not in a position to smash things up in my kitchen if I'm having a bad day and call it music..... well, maybe I could, but in my case it'd be called a breakdown, and I wouldn't get a record deal out of it.

Every drummer I've ever met. 

So, when I read about drumming being used as a therapy for Autism, my immediate reaction was that I could see it being fun, and maybe great for stress relief... but a therapy?
It seems that everything is an autism therapy;
Put jam on a banana and eat it by the light of a new moon? Therapy.
Go skinny dipping in the Irish Sea while eating a block of cheese?  That's a therapy.
Make a pact with the Dark Lord at midnight in exchange for the soul of your firstborn? Therapy.
So I thought that drumming would join the ranks of homeopathy and Satanism in the Great Halls of Quackery.

But it seems that Autism and drumming is a thing.
A study carried out in Chichester University earlier this year shows improvement in students interaction with peers, ability to follow instructions, improved concentration, calmer behavior and improvements in dexterity, timing  and rhythm.  The article doesn't say what the sample size is, and the data has yet to be analysed fully, but at worst, the kids seem to be having a blast.  At best, it seems to have the potential to be used as a therapy to lessen negative behaviours.
Another related piece of research looked at how percussion can improve attention to task in autistic children and found a positive result; this was a small sample group, but I can see how drumming would make any kid (or adult who pretends they're doing it for the sake of art, even though we totally know better) happier and calmer.

As I write, my glasses are balanced on my face on a wing and a promise, in an ill-fitting metaphor for my life (one arm broke last night, just because it could).
Finian (my autistic son) is treating sleep like an exciting game show in which you have to guess the minimum number of hours sleep you need before you start hallucinating that a crass, racist misogynist is the most powerful man in the world... wait a minute.....
Trying to exercise, write, read, see my friends and do all the things I love are constantly being sucked into the "Hah-We'll-See-About-That" hole that seems to live in my house, next to the autism gremlins and the Can-I-Stop-Adulting-Now fairies.
Life can be a bit crap sometimes.

Luckily, my face is also unbalanced

I can't imagine anything more satisfying right now than sitting behind a drum-kit and hammering seven bells out of it.  And if it leads our autistic kids to feel a little happier in this crazy world, then all is good.

Tuesday, 11 September 2018

Autism & Southern Exposure

This post was written in the comfort of my own home in 2010, when Finian was 6.
If I had to write it tonight, it would most likely be written from the confines of a Garda station, in the company of a social worker.
Good times.

July 2010
Finian and his big sister were invited to a birthday party yesterday at a really nice play-centre-type-place.
I was a little anxious as I wasn't familiar with the place and didn't have much time to prepare for the party.
And I'm not the one with autism.

So Big Sister catapulted herself into a small tornado of 10 year olds, and wasn't spotted in civilised society for three happy hours.

Meanwhile my understanding friends weren't offended at my poor conversation skills, lack of eye contact and intense focus on the whereabouts of Finian, as I busily frustrated his plans for escape.
(again, I'm not the one with autism, etc, etc)

He navigated  three dizzy tiers of the soft play area like a pro, and shot down the slides like a joyful little cannon.
All the while he was watching for an opportunistic open gate, a chink in the netting, or a strategically placed chair against a railing, so he could make a mad dash for freedom.

But he knew this wasn't gonna happen with BitchMother on patrol.
So what's an autie kid to do???

He climbed to the top tier, accessible only to those under 3 feet tall, with the litheness of a mountain goat.
And stripped off.
He dangled his crown jewels and aired his peachy little bottom to the world at large, safe in the knowledge that  BitchMother could not thwart his happy exposure.

I had to wait, head in hands, until he descended the slide in all his splendour.

So he was re-dressed, re-educated in the niceties of social decorum and finally re-released (that's a word, OK?) into his natural habitat of a soft play area full of juvenile delinquents.

And then he stripped off.
In the top tier.

This time there was less discussion and more delivery of information, along the vein of "Three strikes and you're out!".

My apprentice streaker remained suited and booted for the remainder of the party, and sat peacefully while he ate his chips and juice.

There were no further incidents of anti-social behaviour, but he had about him an air of quiet satisfaction that his work here was done.

Sunday, 9 September 2018

Autism & Turmeric

It's fair to say I'm not the best housewife in the world.
Before I go any further, I KNOW the term housewife will upset some of you.
While it's not the most accurate term (I'm not actually married to my house... that'd be weird), it's easier than describing myself as a Domestic Goddess (lies), a Homemaker (damned lies... I don't so much create a home as desperately try to prevent the further destruction of my current one), or a Stay-At-Home Parent (mostly because I stay at home only if I'm hungover, or if I have offspring to save from the clutches of death... see Homemaker above).
But if you're offended by my terminology I make no apologies.  I recently heard a guy describe himself as belonging to a non-binary, pansexual relationship with a female.... which I think means he's a straight guy married to a woman?  Sometimes it's just easier to say what you are in my archaic (but simple) language....  saves a lot of head scratching (it's a bit like when people enjoy a bit of self-righteous semantic wrestling over using the terms "having autism" or "being autistic"... in my world, my son still wipes shit on the walls no matter how you dress it up).
Semantics are the clean-walled domain of those with too much time on their hands.

I'm a housewife, and not a great one.
This morning I fed a mug of cat-food to the dog because I ran out. I may run the risk of inflicting a trans-cultural identity crisis on Vikas, but until she starts temperamentally ignoring me and insists on being called a pan-species, feline mammal, I won't worry about it too much.
I cook more to avoid starvation than to produce culinary delights for my Little Darlings... I mean, WHY would I spend two hours sweating over nanograms of herbs and spices to create a meal that will be inhaled with precisely the same relish as a Domino's pizza, when I could read a book instead?
I consider cleaning an exercise in biological warfare.  If no previously extinct plagues re-surface in my fridge, and my laundry pile doesn't become animated by bacterial colonies and eat people, then I'm happy enough.
You can see that much of my housewife skills centre mostly around the prevention of death.
And none of that offends me, because it's true.

But have you noticed that it's only when people are defending a crock of horse-shit that they become furiously outraged and APPALLED that you could even think to question their beliefs ?

If it looks like a duck, and it quacks like a duck, it's probably an Autism therapy

Sometimes I feel like the Snow White's scruffier second cousin to the seven dwarves of  Petulant, Huffy, Affronted, Pouty, Aggrieved, Incensed and Scandalized for asking things like "are you sure rubbing lavender oil on the cat will cure my son's autism?" or "how do you know standing inside a salt circle and chanting prayers to one of Satan's henchmen  will help my son stop eating the mail?" (true story).
But you gotta ask the questions, or risk spending your life, not to mention your money, falling down autistic rabbit holes.

But I have to admit, that when I came across Turmeric being touted as a cure for Autism, I really didn't need to ask too many searching questions.

It's a spice.
It turns things yellow.
It doesn't cure Autism.

You're very welcome to check out the lovely sites that claim turmeric does more than tart up a curry (here  and here , but there's loads more... and it cures cancer and auto-immune disorders too, which is handy).
But save yourself some time and leave it on the spice rack.
If this upsets anyone, I'm not sorry.  But I will make you a really nice potato curry.

Saturday, 1 September 2018

Autism & GcMAF

I love a bargain.
I'm always suckered in by 2 for 1's and cut-price everything, because I definitely need three bottles of shampoo for my single head; three bottles of  Herbal Essence would be handy if I was an ancient Greek demon, but sadly isn't much addition in soggy County Monaghan where uni-heads are the norm... but who's counting heads in Boots when you could save a fiver?  Also, it seems a half price jar of (limited edition!!!) octopus beaks/batshit jam/radioactive chutney is essential to my survival, and the way they're pushed makes me feel a little impressed with myself that I've managed to avoid a terrible death without them so far. 
Get those bad boys into my basket!

bad hair days were created for multi-buys

Marketing is clever and I don't beat myself up too badly over constantly being hypnotised by subliminal messages and less-subtle sensory battering; on the surface, advertising attracts us with promises of good health, longevity and beauty, but in reality it's much more insidious as really it works on our unconscious fears of aging, being unlovable and mortality.
We love to feel like we've boxed clever by stocking up on crap we don't need (and probably never knew existed until someone marketed the shit out of it), but deep down we know that the house always wins.  We end up buying stuff we were lured into wanting; but we get to enjoy a short-term dopamine hit while the vendor counts his pennies, so it's win-win all round, right?
Well, not really.
The downside is that dopamine has a pretty short half life, while the marketers growing bank balance (and our diminishing one) is a constant.  We need more bargains to feel the high, and at this stage my senses are a little jaded by cut price chocolate sausages and everything-must-go slurry scented candle (a failed experiment in rural shops... we get to enjoy the sweet smell of shit for free here).  It's possible I made those up, but you get what I mean.
I believed that no more exclusive bargains (!!!! with lots of exclamation marks!!!!  I think these come free as well!!!) could possibly shock my senses awake until I stumbled across a person called Amanda Jewell, who recently had to decamp from the UK to Mexico for peddling a drug called GcMAF (which, as the living embodiment of the ultimate bargain, can cure everything from cancer to autism).
Got a brain tumour and HIV? Get yer 2fer1 cure-all here!
Is your autism wrecking your melanoma's vibe? Cure both with our amazing medicine!
That kinda stuff.
With offers like this circulating the ether, Lidl and Tesco really need to up their game.  Suddenly, a free mascara with my foundation feels a little dull.

Research into using GcMAF ( a protein created by altering a Vitamin D binding protein, hoped to stimulate a cytotoxic effect to cancer cells) was pulled several years ago amid discovery of ethical issues, methodology irregularities and the questionable integrity of  the studies.  This did little to stop it going underground and being produced and sold with breath-taking callousness  for use on children with profoundly challenging behaviour and to people dying from end-stage cancers.

These creatures always seem to be one step ahead of the law and only have to change address to continue flogging their lies.  Their inhumanity never fails to shock me.
All we can do as parents is to keep our bullshit antennas alert, and to remember that there's no such thing as a bargain.

Thursday, 30 August 2018

Autism & Alcohol

When you think about it, it's kinda impossible to have a healthy relationship with alcohol; the odds are all stacked in its favour.   It makes you feel great for a few hours but then leaves you begging for a quick and painless death when it's done with you (had a boyfriend or two like that way back when); it empties your wallet with practised ease,  and it sure as hell will never love you the way you love it.
So why do I sometimes use booze as a therapy to soften the edges of the loneliness, boredom and crushing frustration that comes with being a special needs parent?

I'm not suggesting that special needs parents are all closet drunks, adding gin to their morning coffee and pouring rum on their cornflakes; I can only speak for myself when I say that often, after a particularly long, difficult day I find myself opening a bottle of wine.  If Finian is having what I call an "autistic day" I comfort myself with the promise of a nice glass of rioja that evening.  If I have to cancel plans because he hadn't slept the night before, a cold beer that night can take the pain away.  There is nothing on this earth like special needs to make me familiar enough with the off license to know the staff by name.
Nice as they are, that can't be a good thing.

Lots of people can enjoy a drink or two, or even go on the odd bender without it being a big deal; that's cool if you can manage it.  What's bothering me lately is my motives for drinking.  Drinking is portrayed as a fun, sometimes sophisticated passtime, and has been marketed so successfully that no social occasion seems complete without it. But when you stop to really think about it,  consciously putting an addictive solution containing more health hazards than Iggy Pop into your body is all kinds of crazy.
It makes me sick, it makes me stupid and I absolutely love it.  There's a lot of things wrong with that sentence.

I did the very unpretty thing of listing all the reasons I drink; this had all the pleasure of performing a DIY colonic irrigation and having a long, hard look at the results.  It's lucky I have a strong stomach.
I drink because Im lonely, I'm sad or I'm beside myself with stress.
I drink because I'm socially awkward, massively uncool and would rather find a rock to crawl under than deal with a social event.
I drink because I can't sleep, or I can't control the pervasive thoughts that swamp my mind.
I drink because I don't believe I can fun without it, and without it, the real me is a little dull and forgettable.
None of these are persuasive reasons to stock up my wine rack.

And when you have to get up in the morning (and probably during the night) with a bouncy autistic kid, with a head full of broken glass, a mouth that feels like it may have housed a nest of incontinent badgers overnight, and your motivation wedged in the toilet, it's a good time to think about ending the dysfunctional relationship.
It's not even that I drank a huge volume of alcohol.... it's just become a crutch I've been leaning a little too heavily on.  I've experienced enough of alcoholism personally and professionally to know better, but it's much easier to go the off license than to go to the gym, and the lure of the short-term hit is a seductive one.  So, not only do habit and laziness have to be kicked to the kerb, but also other people's judgements.  You have to justify not drinking, and maybe deal with judgement from 'friends' (are you sick? pregnant?boring?) but maybe not drinking could usher in newer, more positive stuff into your life anyway.  No-one needs judgemental people in their lives.

So I haven't drank in a week or so and plan to stay off it for the month of September (initially at least)..... I'd love to say it's easy, but it's shamefully difficult.  It's tricky finding new therapies to replace the buzz of wine, but already I have the energy to exercise more and my mood is more even (which is no mean feat when you're managing depression and anxiety).
In the evenings when I feel the need to escape, I've started crocheting a blanket for a friend, I'm reading more and I'm finding engaging shows to follow on TV instead of mindless chewing gum for the brain.

Going out will be a challenge, though.
It'll be unnerving to sit in a bar or a restaurant  and resist a glass of anything that will make me feel less like a human plank.
There are interesting days ahead x

Sunday, 26 August 2018

Autism & Cannabis

When you're handed your brand-new baby for the first time,  you spend hours counting their perfect little fingers and toes and inhaling the gorgeous newness of them;  the notion of  one day scoring dope for your little bundle of joy is as alien as spreading jam on chicken and calling it a sandwich.
But life has a curious way of throwing you into situations that wouldn't seem out of place in badly-written pulp fiction.  You can find yourself in muddy waters with no clear path forward remarkably quickly.

Often, progress only happens when some pioneering soul steps outside the boundaries of convention and challenges commonly held beliefs and assumptions.  This is rarely an exercise in gaining popularity and invitations to parties; most innovators are treated with suspicion and sometimes downright hostility.  There's a huge risk of failure, loss of credibility and wearing enough egg on your face to become a human omelette.  Progress is rarely neat and linear... it's usually bumpy, messy and exhauting... but mostly it's totally worth it. 
And omelettes are awesome.

Galileo was accused of heresy and spent a good deal of his life under house arrest for daring to suggest that the universe does not revolve around our planet (when we all know it revolves around Kanye West and his large-bottomed wife; but Galileo wasn't to know -  Twitter wasn't as big as Kim Kardashian's arse back then).
Health care workers run the gauntlet of  criticism for providing needle exchange services for drug addicts - needle exchange works; it doesn't 'encourage' addiction, but goes a long way towards preventing ill health.  The only thing it 'encourages' is sniffy judgement from people who'd prefer to sweep the homeless off the streets into a giant skip before returning to their darjeeling tea and House Beautiful magazines.
David Bowie and Prince put gender fluidity on the map decades before millennials made it their thing. They used their talent to make us ask uncomfortable questions while lighting up our world with purple sequins and man-stilettos (we have a lot to thank those guys for).

'nuff said

My point is, progress doesn't just require creative thinking... it also demands balls of industrial strength steel to survive being unpopular, being the butt of ridicule and deflecting people's fear of change (which may be expressed in extreme ways, from career sabotage to social exclusion). 

So, when I heard about parents giving their autistic kids cannabis to treat the worst of their symptoms (like aggression, self-harm and meltdowns), it was easy to dismiss them as new-age stoners who probably administer it while chanting shamanic rituals and clearing chakras with sparkly pebbles.
Judgement is lazy, though. 
And just because I'm finding that most emerging autism therapies are as useful as applying reason to religion, that doesn't mean I should automatically include cannabis in the same shit show.

There are two main active ingredient in cannabis; the psychoactive agent tetrahydrocannabinol (THC) which is the peace n' love chemical that makes you feel at one with the world and want to eat your own body weight in ginger nuts.  But Cannabidiol (CBD) is the chemical  that parents of autistic kids are interested in ; it's antipsychotic, calming, anti-inflammatory and anti-depressant, and its benefit to autistic kids was discovered by accident through using CBD to treat epilepsy (there's a big overlap between autism and epilepsy).  So, autistic children aren't getting high on cannabis oil, but they do seem to be responding positively to a component of it. 
It's use created enough online chatter to attract the attention of researchers (working in Israel, where the production of medical marijuana is legal, and also in the US where red tape is slowing, but not stopping, investigations) who are currently researching its use in autistic kids who are not responding to more conventional medication like ritalin or antipsychotics.
Early indicators point to CBD being strongly beneficial to autistic kids so, what's not to love?

For one, the last few decades has been littered with 'miracle' breakthroughs that turned out to be damp squibs, so it seems kinda prudent to exercise cautious hope until all the results are in.
Also, research is in the very early stages; there is a need for double-blind studies where neither the subject or the researcher is aware of who is taking an active drug or a placebo until the field work is done.  This will give more unbiased information about how, and if, it works.
There's also a need to iron out who exactly will benefit from cannabis oil, what the dosages are, it's safety and any potential side effects.  It's also hard to see how they can predict potential problems caused by long-term use, as using CBD on it's own is so new.
It's not legal in most jurisdictions, and is only legally prescribed by a small handful of experimental doctors, so if operating outside the long arm of the law would cause you sleepless nights and stomach ulcers, it's probably best avoided.

What I can't quite get my head around is the resistance by various governments to entertain CBD as worthy of research.  I don't know if it's association with horizontal potheads is just too big a hurdle for them, but certainly the volume of anecdotes warrant at least  a closer look.  Opiates (which are in the same family as heroin) are prescribed without hesitation, so I don't understand the reluctance to consider another illegal form of medication as being of potential use.
And sense tells me that it's be much safer to process and produce cannabis oil legally, because parents are getting hold of it and using it anyway, legally or otherwise. That would prevent the crazy situation Vera Twomey was put into last year when she was forced to move to Holland so that her epileptic daughter could receive CBD (which reduced her seizures from a dozen or more per day to practically zero).  After months of nothing short of torture, Vera has been given a license to administer the medication to her child at home in Cork, but she has to travel to Holland to collect the prescription.  This  bureaucracy would be almost laughable if it wasn't so cruel.

To have a potentially helpful medication available to help our kids be blocked by some weird stigma and officious red tape, especially when that drug is less harmful than alcohol, prescription opiates and cigarettes makes absolutely no sense to me.

Charles Dickens said a couple of centuries ago that the law is an ass. 
Not much seems to have changed since then.

Wednesday, 22 August 2018

Autism & The Intriguing Case of the Autistic Stylista

This is an old post from six years ago, when Finian was 8.

It'll give you a laugh, if nothing else, until I can start writing new stuff again.
Enjoy xxx

The Intriguing Case of the Autistic Stylista

As a child I was a big fan of mysteries.
I loved Nancy Drew and wanted to be the token Irish person in the Famous Five (I wonder how Enid Blyton would have handled that...I'm pretty certain my character would say "begorrah" and "top o' the mornin' to you"  a lot.  And she'd probably make me look like a freckled spud. So, in retrospect, I'm glad that dream never came true.)
As a nursing student, my favourite module was psychology.  I just couldn't get enough of trying to figure out how, and why, people behave the way they do.
When I grew up, Fancy Nancy was replaced by CSI and Criminal Minds.
Then CSI was replaced by Autism, the biggest mystery of them all.

I got to super-sleuth my way through conundrums as puzzling as 'The Incredible Mystery of the Streaking Toddler', 'The Fascinating Tale of the Boy Who Ate Sand' and 'The Curious Incident of the Turd in the Nighttime'.
Sherlock Homes was in the building and wearing lip-gloss.

As time went by I became quite adept and figuring out the meaning behind apparently bizarre behaviour.
For example, when Finian tells me to take his toes off (yes, he really says that) he means that he wants a cuddle in bed.  Chief Inspector Mammy deduced that one night he got a cuddle after having his toenails cut.  Either that or he thinks his mother is Hannibal Lecter.

Dragging visitors to the front door and attempting to eject them with great  (but curiously polite) force does not mean that he is sick of your company, thank you very much, and that he is on the verge of barfing if he has to tolerate your mug for another minute.
He just wants to watch the tail lights on your car.
Although, I must remember to employ his method the next time Jehovah Witnesses call around  (especially the barfing bit).

So I thought I had a pretty good handle on the whole solving mysteries shtick.
Until yesterday.
Finian threw a shit-fit (that's a medical term for a REALLY bad tantrum) because he wanted me to wear a posh frock.  
While we were hanging out at home. 
Hoovering and making jigsaws and eating beans on toast.

Maybe he's watched one too many episodes of  Trinny & Suzannah with me and decided that screeching at me would  shock me out of my current "style" rut of jeans and cardigans.
Maybe he thinks wiping the kitchen counter isn't given enough respect and deserves to be approached in heels and costume jewellery.
Either way, I still can't figure out what his angle was.

I eventually had to hide the dress on top of the fridge (I was desperate, OK?  Hopefully no-one will eat it, but in my home you can't be certain) and let his tantrum blow itself out.

I think Sherlock Holmes will have to retire without a pension.