Friday, 30 March 2018

Autism; Science, Art.... or Tigger?

As it's the Easter holidays and I'm expected to do ridiculous things like feed children and not kill people, I'm dusting down an old post from a previous blog (posted Sept 2014).  Enjoy XXX

Thursday, September 25, 2014

Science, Art... or Tigger?

I have a confession to make.
I can't explain what Autism is.
I've only been swimming in a sea of special needs for close on 10 years now, so it would be reasonable to assume that I know what I'm dealing with at this stage.

Except for the small matter of not having a clue.

I'd prefer to to have a lash at translating the Dead Sea Scrolls from Aramaic into Klingon.
I'd sooner teach quantum physics to preschoolers using crayons and play dough.
I'd rather grow a beard (not so difficult actually, now that I'm peri-menopausal) and explain the plot of Ulysses to earnest, flea-bitten students.
Are you feeling my vibe that I'd rather not do it???

About 8 years ago I became very familiar with the Triad of Impairments, which describes impairments in imagination, social relationships and communication as the three-legged-stool upon which Autism drunkenly wobbles.
It appeared in every article I googled and formed the basis of Finian's eventual diagnosis.
I don't usually have a graphic of the Triad of Impairments handy in my make-up bag, but just in case you're feeling a little curious, here's the very thing.

for your viewing...erm...pleasure

Succinct, isn't it?

And despite all the jargon, I still can't find my son in the tangle of "impairments" and "lack of"s.

Describing him as a list of impairments is just wrong, on all levels.
I understand that professionals need to tick boxes to get a handle on a child they don't yet know, but whipping out a copy of the Triad of Impairments when my friends asks why Finian can read car registrations in Irish, but can't tell you he feels hungry, does nothing to answer their questions.

So, over the years, I've attempted to formulate my own definition of Autism.

I'm suspicious that if Finian's lower legs were x-rayed that they'd discover he has tightly coiled springs where his tibia and fibula should be, so for a while I described Autism as a condition where you have difficulty with self-regulation.
But after a while I felt like I was describing a constipated grasshopper, so I dropped that one and went back to the drawing board.

Finian's sensory processing disorder is a very obvious aspect of his Autism to observe, so for  a while I used this as the donkey to pin the descriptive tail to.
I would say "he strips off because he perceives his clothes as uncomfortable, or even painful"  or "he can't eat fruit because the texture makes him gag".
But as time went on I thought, maybe he just doesn't like fruit and maybe jocks from Pennys scratch like medieval hair-shirts.
And not liking Friday Night Eighties being played too loudly on the car radio is not so much a sensory processing disorder as an expression of excellent taste.
You don't have to be autistic to know that some things are just crap.
So I dropped that one as a handy sound-bite to explain away my child's behaviour.

I have particular trouble when my young nieces and nephews ask "why is Finian jitterbugging like a 70's disco-ball on acid?"

I can't really refer  a four year old to a dusty tome about developmental delays,  so I usually respond with something like "erm...he's extra Tigger".  

Surprisingly, they buy this.
But maybe it's not so surprising.
Adults tend to over-complicate things, and it's possible that Autism isn't really that complicated at all.

Maybe I have been blessed with an exuberant cacophony of  energy, light and sound that no medical book has yet been able to pin down.
I'm beginning to see that it's artists, and not scientists, who will eventually perfectly capture the essence of Autism.
Or maybe a four year old niece will get there before them.

Friday, 23 March 2018

Autism & Reiki

I'm approaching this post with a sense of ambivalence, (which is code for having a massive dither) because my head is being all Stalinist and is already herding Reiki onto the next train to the gulags, while my heart is having a fluffy, Earth Mother moment and wants to cocoon my son in a giant Reiki-esque cuddle.  Grey areas don't sit comfortably with me;  I'd prefer to be force fed a diet of jellied eels cooked in frog spawn while listening to Big Tom on a loop than to entertain the fact that I feel two ways about one thing, but there you go.  Reiki is intangible and unsciency, but I just can't help liking it.

Me sitting on the fence.  True story.

Y'see, Reiki is lovely.
The Japanese didn't just invent the PlayStation and anime; they also got their creative freak on with spiritual/martial arts crossovers like Karate and Jujitsu, and dipped their toes into the sublime with Reiki.
Mikao Usui developed Reiki, not as a religion (which some people mistakenly believe), but as a technique used to promote relaxation and healing.  Reiki is a combination of two words; Rei is the higher intelligence that guides the universe, while Ki is described as as the spiritual energy that animates all living things, and is the unseen force that leaves the physical body at death.  So Reiki can be described as a non-physical healing energy that is guided by a Higher Intelligence. It is believed that disruption of Ki is caused by negative thoughts and emotions, and is the root of physical ailments.

A Reiki session involves the practitioner placing their hands either on or near the body to re-attune the flow of energy. I had a session done once a number of years ago and I felt almost dizzy with relaxation afterwards; that may have mostly been due to having a nice lie-down in the middle of the day, but I have rarely felt that zen-like, before or since.  The old killjoys called Time and Money prevented me from going back, and my cranky left-side logic insisted that it didn't really help, but I have definitely spent money on a lot worse and I would encourage anyone to give it a try.

If you can park your personal beliefs to one side and send your logical left hemisphere into a quiet corner with a Mars bar,  I think there's a couple of interesting things here.
Firstly, it's well established that emotional and mental disturbances have a pretty profound effect on our physical health; there's no shortage of studies linking depression with ill health (which is probably not the most helpful thing to point out to a depressed person) so it figures that helping to correct our mental health will in turn help re-tune our physical health.  The glaring problem with this, though, is that our western mentalities know we can't wish ourselves free of hypertension, or Autism, or cancer, so we discard it into the Psychobabble Bin.  But there's no doubt that our bodies run on energy, so we know the energy exists, so maybe we're just not capable of seeing what's under our noses.  It's possible that we value our intellect at the price of our spirit.  At worst, it's possible that believing you feel better might trick your body into actually feeling better.  At best, there might be something to it.

The other thing about Ki is more personal to me. When I was a nurse I was privileged enough to be with a number of people as they died;  I literally held one lady in my arms as she passed away.  There is a palpable sense of leaving when someone dies that is more than wishful thinking or emotional comfort.  The leaving feels as physical to me as the body in the bed.  In fact, often the body would appear almost unrecognisable after they departed.  Even though I'm not a fan of religion, the notion of Ki sits comfortably with me.   I have no idea if the Ki rambles off to strum celestial harps on a giant marshmallow (that sounds monumentally boring) or if it heads off to Lidl to buy a loaf of bread, all I can say for sure, at the risk of sounding delusional or a bit too fond of a nice Shiraz, is that I felt it.
(personally, I hope I depart to a small party with all the people I love most, where Prince is the DJ and I never get fat eating ice cream. A few books and hot coffee would be good too.  Really, I'd make a pretty low maintenance celestial being, if it wasn't for the whole Prince thing).

What I like about Reiki is that it is one of those rare complementary therapies that doesn't claim to cure Autism (or anything, for that matter).  Some sites says that it can help reduce stress in autistic kids, and one even shoots itself in the fiscal foot by suggesting that it may actually cause stress by expecting the child to remain still for a period of time, so it might be best avoided.  There's more chance of Leo Varadker dodging a photo op than of my son chilling out quietly on a therapy bench, but here's a thought.  It could actually be a pretty cool  therapy for the parents of autistic kids .... it'd definitely be healthier than downing half a bottle of Merlot (my knowledge of grape types betrays me.  Sigh) or eating a pack and a half of Jaffa Cakes instead of eating dinner (that definitely never happened).

"I missed a WHAT????"

So, while it may not be especially beneficial for Autism (unless your child is lucky enough to be able to remain still without resorting to a staple gun and horse tranquillisers), it might be worth looking into for yourself.  Even if your Ki packed it's bags and left for Neptune years ago, it'd be good to re-learn the art of stillness.

Thursday, 15 March 2018

Autism & Secretin

Donald Trump does not have a monopoly on Fake News. 
Thousands of years ago, Rameses the Great etched scenes of his armies defeating his enemies on temple walls in Egypt.  Never mind that the battle was, at best, a stalemate; his subjects loved it.
In 1835, the New York Sun ran a story about life being observed on the moon.  Subscriptions soared, and even though the paper eventually admitted that the story was a hoax,  it did nothing to diminish it's popularity (note to self.... even in the 1800's any paper called The Sun made better toilet roll than reading....who knew???).
A decade ago, Irish people rescued the banks from insolvency by accepting austere pay-cuts and were rewarded by the same institutions with increasing bank charges, increased repossessions and reduced debt forgiveness.... wait a minute...  that's not fake news....

Anyway, you get the idea.
We love a good story, and if entertainment comes at the price of honesty, so be it.
But sometimes the price checks out more costly than journalistic integrity and affects the well-being of our children, and an untamed media seem to have no moments of soul-searching when they question if this is OK.
The story of  hailing secretin injections as the Next Big Thing in the treatment of Autism was one of these pricey tales.  Luckily, it didn't go as far as costing lives, but it did lead families down another pointless rabbit hole, away from therapies that actually work.

Secretin is a digestive hormone whose main job is to control the pH of the small intestine, where most of the fun and games of digestion occurs.  In the late 1990's, three autistic kids were given intravenous secretin as a routine part of  preparation for having an endoscopy;  following this, their parents reported an improvement in their autistic behaviours.
But crediting an improvement in autistic behaviours to randomly receiving a hormone injection, is like saying that your child was born on a Monday, therefore Mondays cause Autism.  Correlation does not always equal causation; but scared, exhausted special needs parent don't think with clear-eyed logic.  We are prone to seizing any atom of hope when we are flailing about in the dark.
When my son was younger, I was convinced that his eye contact was improving a few weeks after giving him fish oils.  Of course it wasn't, but for a little while it created enough hope to get me out of bed in the morning and to keep putting one foot in front of the other.  Hope is the oxygen of our will to work with our disabled kids; if we can't find it, we either make our own (no matter how misguided) or give up.

So, with no-one to show us a clear path forward, we begin to create our own. 
Some of these paths are worth preparing for; strap on your favourite hiking boots and throw a couple of extra Mars bars into your backpack because it's going to a long, tiring trek.  However, the view will be totally worth it in the end.
Unfortunately, the reality is that most of these paths could be easily completed in sequinned stilettos; there are pretty, expensive and will inevitably end in blistered despondency.

Fabulous, but not great for chasing autistic kids in 

It's human nature to look for cause and effect, to try an search for nuggets of reason in this unreasonable world. We can blame natural disasters on a lunar eclipse, or a run of bad luck on the number thirteen.
It's uncomfortable to consider the notion that sometimes there are no reasons.  Sometimes nature is random and capricious;  sometimes we just  collect our happy jackpots or terrible windfalls from a giant cosmic lottery and our job is to make of them what we will.
As a great philosopher once said, shit happens.

The notion of treating Autism with secretin injections was latched onto by a culture preoccupied with curing Autism.   In particular,  the movements promoting the biomedical model of Autism (which invariably blame gastrointestinal problems as a root cause) were quick to jump on the bandwagon and flog it to desperate parents.  Every time a new 'treatment' for autism is proposed, it's depressingly inevitable that  conscience-free creatures will emerge from their caves to take advantage of  the vulnerable.  Research has shown that secretin has no significant effects on autism, and it's popularity is the result of a media storm in a teacup. 

While there don't appear to be serious side-effects for secretin injections, I think I'd find it easier to wrestle an irate water buffalo than to pin my son down and stick a needle in his vein.  If I was a betting person, I'd lay high stakes on my boy inviting me to stick the needle where the sun don't shine, and I could think of better ways of encouraging him to communicate with me. 
There's just no point in putting your child, or yourself, through that trauma for no benefit. 
Secretin is another addition to the giant Autism Crap Heap, but it's good to plant these 'therapies' where they belong.

Tuesday, 6 March 2018

Autism & Floortime

Autism parents know floors.

I have spent many hours sitting on the kitchen floor with my son as he exercised a vocal range that Beyonce would be envious of.  I knew which tiles had cracks, which ones had stubborn marks that no amount of scrubbing could erase, and which ones warmed up quickly when the heating was switched on.  
It was pretty cathartic to finally lever those tiles off the floor a few weeks ago when my husband and I were prepping for home improvements, and I took a bit more pleasure in smashing them to pieces than I care to admit.  

My husband and I were very civilised in the aftermath of our son's diagnosis; we took turns at having breakdowns.  
I spent the first two years grieving hard, crying uncontrollably, terrified by the future and struggling to cope with the present.  James stoically cared for me, in his solid, lovely way until  the clouds parted and I started to work through my fear and loss of direction.  
Then he quietly lay down on the warm oak floor of our sitting room and didn't get up for weeks.  

There is a spot on the floor in Dunnes Stores in Dundalk that I feel a sort of ownership of, as it was Ground Zero for many supersized meltdowns.  It was on our path out of the shopping centre after we'd (usually very successfully) completed our schedule, and my boy had Just.  Had.  Enough.
So I'd sit on the floor of Dunnes while he thrashed about and performed some pretty epic vocal gymnastics, until he felt able to continue on to the car park.  
They really should have built a little bandstand there to facilitate our performances, or put up a commemorative plaque in memory of the many times we frightened hapless shoppers, but the floor was where the action was at, and that's where we stayed.

So when I became aware that there was a therapy called Floortime, I avoided it like the 1980s avoided style and understatement.  I would rather eat my own back-combed, over-processed hair (with maybe my acid pink legwarmers as a side dish) than consciously squat down on the dirt to engage in ground-level therapy.

The 1980s; The Land That Taste Forgot

Floortime was developed by Stanley Greenspan and Serena Wieder in the 1980s and does what it says on the tin; it works by teaching parents to literally get down to their child's level, to follow the child's lead, and to draw the child into a shared world.   
It is a 'developmental, individual-difference, relationship-based model' (DIR) for working with autistic kids.  It aims to teach emotionally meaningful learning experiences for the child, and to build on healthy development rather than focusing on superficial behaviour.  
On paper it sounds like the kind of parenting we should all aspire to.  
In reality, you'd need to be Mary Poppins on Mogadon to achieve it.  Recommended therapy sessions last from two to five hours a day, and even if you had the time and money to afford it, that intense level of input would drive the most dedicated parent straight into the loving arms of their nearest off-license. If you had no other family, no job, no friends and no life, you might just be able to maintain it's demands.... but if, like most mortal parents,  your life is a circus balancing act on roller blades,  then implementing it in it's entirety is a mammoth task.

It was one of those therapies that crucified me with guilt in our early autism days.  I wasn't capable of giving it to my son, and I was filled with dread that I was failing him by not providing it.
It took a while for me to realise that when you pare back the jargon and dial down the intensity, that Floortime, in essence, is playing with your child.  Rolling a ball over and back lays the foundations of the to-and-fro of communication.  Pushing trucks in the sand gives you the opportunity to chat about colours and explore textures. Watching favourite cartoons with your child can form the basis of social stories.  

Playing with your child doesn't have to be hard, and doesn't need to be sold as a 'therapy'.  Ten minutes here and there, in between cooking dinners and doing school runs, is as much as most parents can manage.  I imagine this is more fun and productive than resentfully scheduling the rest of your family around your autistic child's therapy.   

Even though the websites selling Floortime are not shy about singing their own praises, Autism Pundit reviewed research into it and concluded that there is no evidence to suggest that it is an effective treatment for autism.  A review of available research by Mercer in 2015 found the same.  

So, lesson learned.  
I could have spared myself a lot of guilt, and learned sooner to be my son's mother, and not his therapist.