Tuesday, 24 April 2018

Autism & Son-Rise

When I first stumbled across Son-Rise, I was hopeful that finally a therapy had been developed that would both treat autism and peel my son out of bed in the mornings without use of threats or a galvanised crowbar.
Sadly, it does nothing to help my son appreciate the joys of early mornings (it seems the only cure for dawn grumpiness is hot chocolate and a way-too-loud dose of Bob the Builder).  However, it does appear to offer an intriguing approach to autism that caught my attention.

an expression of our early morning home through the medium of  cats

Son-Rise was developed in the 1970's by the Kaufman couple, who were searching for an acceptable treatment for their autistic son, Raun.  They were less than impressed with  the therapies available at the time.  Like many special needs parents, they felt forced to forge their own path in the absence of one  that would meet their son's needs.  The core concept of Son-Rise is that the parent is trained to resist the temptation to coerce the child to join 'our' world and instead to enter the child's world.  This is done by parallel play, by echoing the child's verbalisation and by mirroring their behaviour.  This to gain the child's trust and to create a relaxed, non-judgemental environment in which  skills can later be taught.  It is a parent-led, play-based therapy that aims to facilitate the child to learn skills when he chooses to, and not according to the educator's schedule.
Parents can attend a centre for training, but most courses are on-line, which is obviously much more convenient for a special needs family.
It really sounds great.
Anything that is based on kindness, patience and the experience of the child has to be good, right?

But I began to wonder about a couple of things;

The websites are emotional manipulation on steroids.  Videos of sobbing mothers (never fathers, as far as I could see... honestly, women are so embarrassing)) crediting Son-Rise with their child's first "I love you mommy"  feature heavily (it seems that truly manly fathers don't need to hear this... they must be too busy hunting bison and wrestling bears).  There are acres of beaming families hugging children who definitely aren't eating sand or using your face as target practice.  There are proud stories about non-verbal, withdrawn children graduating college and holding down jobs.  Call me a jaded cynic, but my bullshit antenna was buzzing like a strung-out bee who had just stumbled across a meth lab.  Any therapy that needs to twang heart stings smells a lot like it's not based on much substance.  A quick search resulted in only one paper from a peer-reviewed journal citing the effectiveness of Son-Rise, but the authors were concerned that the results say more about parental attitudes than the actual effectiveness of the therapy.  If Son-Rise works, it shouldn't be that hard to prove.  Tears and testimonials are a thin veil over lack of evidence.
Despite all the talk about non-judgement and kindness, the goal seems to be 'normalisation'.   Parents talk about their kids joining clubs, going to parties and having conversations.  I didn't read anywhere that a parent was delighted that their child was out of nappies and could now sit long enough to enjoy an episode of Postman Pat, even though he's 15;  in reality, these are the dizzy heights that most of us aspire to.  There doesn't seem to be any celebration in figuring out what makes your child happy and enjoying that, and that's a sad indication of their true values.  Our kids are amazing and worthy whether they have a masters degree in Physics or in Applied Bob the Builder. And who wants normal?  It's much better fun having a kid who loves searching for the Gruffalo in Lough Muckno (and sometimes indulges in a delicious spot of tree licking), than dragging a sulky teenager through the woods who can't see the trees for his Facebook forest.

There is also much talk of miracles; 'Son-Rise; A Miracle of Love' was the documentary that brought the therapy to widespread attention, and Raun's dad self-published a book called 'Son-Rise; The Miracle Continues'.  The therapies that truly help my son don't rely on the supernatural; Speech Therapy, ABA, TEACCH and OT are grounded and predictable, and require work and persistence.  People wish for miracles to cure their child of autism; the real miracle would be to accept him as he is, work to achieve the best possible outcome for him and love him unconditionally.
The documentary title also implies that if you love your child enough, then he will be cured. There is an unsavoury undercurrent here,  that the kid who isn't cured has a parent who just doesn't love him enough.  And they do talk about cure; the Kaufmans don't hold back in claiming that Son-Rise cured their child... what they're less enthusiastic about sharing is that the first five clinics they took their son to failed to diagnose him as autistic.  It was only on his sixth evaluation that he was given the diagnosis, so it is fairly probable that he didn't have anything to be cured of in the first place.

I hate to admit that I'm also a little disturbed by a name that sounds more like a doomsday cult who enjoy nothing more than a spot of human sacrifice with their holy Armageddon.  I know that's unfair of me, but unfortunately I carry all the psychological baggage of a lapsed catholic, and I immediately think of hellish judgement days and eternal damnation of the soul when I think of  sons rising (especially with capital letters).
Or maybe they just need a better marketing team.

As with any of these miracle cures, the cost is prohibitive.  Predictably, lots of people can, and do, part with their hard-earned cash, but I have no doubt that 'recoveries' are as rare as hens teeth (unless you know some seriously scary hens).  Playing with your child is free, and comes without the cost of bloated expectations.
And while there are doubtless benefits in the methods espoused by Son-Rise, maintaining the recommended 40 hours a week  of child-led play sounds like a recipe for  super-sized headache.
Much as I love my son, my instinct tells me that if I was to mimic his melt-downs, that my husband would have (with patience and much love) flung me through the gates of a cloistered convent with instructions that he had changed his address, his phone number and his identity.   And I don't think my family would appreciate me joining my son in getting arty with my own faeces... one finger painter in the family is quite enough.    What I'm saying, is that sometimes tough love is required from a parent; when you say "you can't eat glass because I say so" you're not going to be popular, but with some situations, patience and kindness just doesn't cut it.
The central principles behind Son-Rise are very simple, but they couldn't ever hope to live up to their inflated claims.  

Tuesday, 17 April 2018

Autism & Facilitated Communication

We all have people in our lives who aren't great communicators.

Teenage hormones don't stop at changing innocent, playful children into a raging, lust-filled monsters (damned to forever discover unwanted hair erupting from seriously weird places, and to be appalled that they find Jessica Rabbit attractive);  they also seem to lose the ability to move their lower jaw and speak in a language of  huh's? and wha's? only understood by other teenagers (and, I suspect, cavemen).
Married couples sit on the same sofa and text each other dirty jokes without exchanging a single word (my husband and I never do this.  We have earnest conversations about politics and global warming while carefully taking each other's point of view into consideration.... wait a minute, that's Prime Time.  Damn, we totally do the dirty joke thing).
Customers complain to busy waiters, without a please or a thank you, that their food isn't properly cooked, and then wonder why it tastes a little strange when it's returned (sidebar; never piss off the person cooking your food, unless you're partial to an interesting dollop of chef's saliva in your bechamel sauce. Mmmmmm.  Full of creamy goodness).
So, communication is important;  you don't need to have an autistic child to know that. But even though it's in everyone's best interest to keep the flow of communication as smooth and clear as possible, it's not unknown for therapists to over-reach themselves in an effort to encourage our kids to make themselves understood.
Facilitated Communication bloomed out of the gaps in communication with our autistic kids, and even though it seems to have grown from a good place, it is too heavily laced with bias and wishful thinking to be truly useful.

Facilitated Communication  is an awful lot like being married; you get to put words in the mouth of your partner and fill in the blanks with phrases of your choosing.  For example, when my husband is engrossed in watching thirty grown men tapping a ball around a playground, I mean pitch, we have some of the most intimate, meaningful conversations of our adult lives.  I discuss in detail the current emotional states and psychological workings of our children; he says "huh?".  I pour out all my hopes and dreams of a future filled with travel, learning and self-development; he says "grand".  I tell him I discovered the PIN number to his credit card and just ordered  a new wardrobe of clothes (plus shoes) for myself and he is suddenly as attentive as the lovesick young student who pestered me for weeks for a date back in college (the pestering thing is my version of events -  he reckons it was our mutual love of cheap beer and dodgy nightclubs that drew us together.  Either way, between us we don't have a romantic story to bewitch our kids with... beer and stalking don't make great taglines in wedding anniversary cards).
Facilitated Communication (FC)is a system of supporting the client's hand or arm while they point out letters of the alphabet on a board, or to type letters on a keyboard.   While some people with disabilities need physical support to guide their hand, supporters of this system believe that even those with good motor skills (such as those with autism, or apraxia) lack the confidence to select letters independently.  They believe that the facilitator is necessary to provide moral support, to initiate movement and to give verbal prompts and feedback.  This system was first given air-time in Denmark in the 1960's, but was soon put out to pasture to die a quiet death when they realised that it  simply didn't work.

"You called me a WHAT????"

However, it was dragged out of retirement by Rosemary Crossley, a special needs educator, in the 1970's.  Crossley met a severely disabled girl called Ann McDonald and was horrified by the institutional conditions she lived in.  She fostered the girl (who was later the subject of a movie called 'Annie's Coming Out') and wasted no time using FC to improve Ann's quality of life.  Anne lived with Crossley for 32 years until her death, and it is clear that her efforts to facilitate Ann's communication came from a place of kindness and love.  The story came to the attention of  the media and was embraced as a simple, uncontroversial teaching strategy.  With a cultural backdrop of questionable behaviourist methods and risky biomedical beliefs, FC must have been balm to the special educators souls; it didn't didn't court the controversy of ABA or challenge  evidence-based medical practice.  It's really little wonder that people liked what they saw and ran with it.

But no amount of well-meaning kindness can compensate for the fact that FC just doesn't work.  It has been shown  many times over that the facilitator unknowingly determines what is typed or selected by the client.  The use of FC has been discredited since the 1990's, but it continues to re-surface from time to time under new guises.  The Atlantic  reports that "the expectation of validity combined with the facilitator's desire to do good" may be the secret to it's longevity, but it has exposed a dark side to the human psyche when unfounded allegations of sexual abuse were levelled at parents on the strength of FC messages.  It's a pity that  well- meaning beginnings spawned such an ugly underbelly, and if cool-headed reason had allowed FC to live out it's days in quiet obscurity, a lot of suffering could have been avoided.
Facilitated Communication is a lesson in not letting the heart rule the head.

That said, it's tempting to get my husband to spell out a promise to take care of the ironing for the rest of our natural days, or to clean the bathroom more than once a decade.  It might not be legally binding, but it'd be fun to distract him from sending me dirty jokes.

Friday, 13 April 2018

Autism & Reflexology

There are two types of people in this world.
There are normal, lovely people who enjoy a nice foot massage...
.... and then there are those who would prefer to be flayed alive while performing eternal sound checks for Big Tom &The Mainliners (who would possibly benefit from a stint in rehab, judging by their name) than to have anyone come within spitting distance of their bunions.
(I'm aware that this is the second time I've dissed Big Tom in this blog... I'm  recklessly courting danger seeing as I live in Co Monaghan.  Hopefully I'll be allowed three strikes before  I'm executed without trial on the shores of Lough Muckno.  
Totally worth it, though)
A foot massage is one of the few things that briefly stops me worrying about autism, the futility of existence and why bananas catapult from green to brown at light-speed, with only a thirty second window in which they won't kill you.
It's a loving narcotic, that can make all the dark stuff go away for a little while.
But when a foot rub decides to re-brand itself as a therapy, the pressure is on to make good it's promises.

There is evidence that some form of reflexology was practised in ancient China and Egypt, but it was modernised and made popular by Eunice Ingham (who was a physiotherapist) in the 1930's.
The idea behind reflexology is that the entire body can be mapped out on specific points on the feet.  Manipulation of these points are believed to identify and treat 'blockages' of energy on these points.  These 'blockages' (which are felt as tender, sometimes bumpy areas) are thought to represent ill health, which can then be restored by unblocking the energy channels through massage.

Couple of things;
If anyone presses on your feet hard enough, it's going to hurt.  So the pressure your therapist uses may depend on whether she is at one with the universe, or if the cat pissed on her cornflakes that morning.  If she's in a bad mood, she's going to press harder to make you atone for the sins of her incontinent kitty, giving the impression that you have more problem areas than you actually have.  Also, if you have the pain threshold of  a hungover kitten you will experience discomfort differently to a woman who could comfortably make the dinner and do a spot of ironing while in labour before popping off to the hospital to produce a perfectly baked baby by teatime.  What I mean is, pain is subjective and isn't always a reliable indicator that something is awry.
Also, reflexology charts vary quite widely depending on the source; the kidney point in one map might be the transverse colon in another.  So one therapist could believe she is treating your  Merlot-induced incontinence while another thinks she is unblocking six months worth of Big Macs from your large intestine.... there's enough excrement right there to smudge the validity of their claims if they can't even agree on where the shit is happening.
Various websites claim reflexology can treat the usual alternative health suspects of muscle and joint pain, insomnia, stress, hormonal imbalance, MS, cerebral palsy, autism, fibromyalgia etc etc.  It's like a drunk three year old found a medical index and highlighted the fun-looking words with a crayola.  In fairness, some websites are clear in that they don't diagnose or cure, but these are rare and most of them seem pretty cavalier with their curative wish-lists.
A number of years ago I did a course in reflexology and was taught by a lady who insisted on calling organisms orgasms.  It brightened up an otherwise tedious class and it also made me really wish I was a virus...  yeah, they might be murderous, pandemic-causing creatures, but they were definitely having  way more fun than me.   I met a lot of lovely people on this course and I believe that therapists who work in this area (for the most part) are kind, well-intended souls who want to spread a little love and comfort.   But as with other alternative therapies, there is a risk that people can delay proper medical attention for potentially serious conditions.  There is also no scientific evidence to support it's inclusion in healthcare, so if you're looking for a foot rub to cure your child's autism, you might as well roll yourself in pork and flour and call yourself an silly sausage.  It just doesn't cut the mustard.

That said, there is no getting away from the fact that reflexology is lovely.  My son loves a deep foot rub and will often wave his less-than-lovely size 9's in my face when he's feeling sleepy.  It really soothes him, and it's nice to see a bit of self-regulation going on as he actively seeks out it's comfort.  It's not so nice if he has only had a nodding acquaintance with soap and water for a few days, as he has definitely developed that uniquely teenage boy thing of having feet that smell like blue cheese dipped in battery acid.  Then, rubbing his feet is less an act of love and kindness and more an exercise in superhuman endurance.  I expect immediate access into heaven when I die.

So reflexology could benefit your child in that it might help him to relax; it might be useful when winding down for bedtime, or before a potentially stressful situation like having a haircut.  But if you're hoping it will cause a reduction in autistic behaviours, all the evidence points towards a short trip to disappointment.

Monday, 9 April 2018

Autism & Sleep Therapies

Y'know that feeling when you leap out of bed in the morning, fizzing with energy, eager to brighten up the world with progressive ideas and sparkling innovations?
Yeah, me neither.
My strict morning routine isn't so much cleanse, tone and moisturise, as check to see if I still have use of my legs before I wobble to the bathroom to brush my teeth (I'm pretty sure small animals die in my mouth overnight);  it's difficult to be taken seriously as Director of Morning Ops when you have badger breath.  The only morning prayer I say is one of thanks to the Great God of  Myopia, as my reflection is a hazy blur; for all I know, I could be Liv Tyler until I put my glasses on.  So I keep them off as long as possible, just so I'm not a threat to her.
I'm the reason God invented coffee and military grade concealer.  In my world, coffee and concealer are not so much luxuries, as stalwart providers of  heroic public service; without them, I would be more scary, less coherent and there would definitely be more people in hospital. 
In my bid to provide the consistency that experts insist autistic kids need, I have religiously repeated this morning routine for the last 13 years.   I'm not sure it makes my son feel any better, but I usually have fully functioning limbs and the ability to construct a sentence by about 8am.  Not bad going, if I say so myself.

Autism parents talk about sleep like crack den veterans;
"Hey man, how much did you get?"
"4 hours"
"What?? Together???  You must be so high right now"
"Why, yes, thank you.  I certainly feel less murderous than usual"
"Cool, man.  You can put the machete down now".

Everything gets on your nerves when you don't get enough sleep. It's tougher than normal to deal with everyday challenges like mundane plans going pear shaped, difficult autistic behaviours  and kids' squabbles that would usually only be background noise.  It can get that even the sound of your husband breathing can make you consider doing fifteen-to-life just to make it stop (that noise you hear right now is my husband on the phone, cancelling his life insurance).

Of course, the reason Autism parents don't sleep is because their kids don't sleep.  My son treats sleep like an unpredictable, rule-free game of DodgeBall.  He sometimes plays a straight game of Manfully Resisting Slumber; sometimes he lulls us into a false sense of security by happily falling asleep and then catapulting awake at 2am wondering where the party's at.  Then sometimes, just to confuse us, he'll sleep for eight hours straight.   
There doesn't seem to be any pattern, discernible cause or single remedy to his disdain for sleep; he just likes to show it his middle finger, often. 

Over the years, we've read every book, kept every chart and tried many therapies, with varying success. Some of these work some of the time, but if you get any ideas (or have any more to add) then please feel free to pitch in.

Melatonin; this is a hormone produced by the pineal gland in the brain that makes you feel sleepy when it gets dark.  In some countries melatonin can be bought over the counter for jet-lag, but we love a bit of red tape in Ireland and are made jump through a number of bureaucratic hoops before we can use it for our kids.  It's use in Autism is evidence based , but like lots of parents, we resisted going down the road of 'medicating' our son for longer than we should have, fearful it was a slippery slope to sedative use.  Melatonin is not a tranquilliser and will not 'drug' your child or create dependence.  He will still go through normal sleep cycles.  Research has demonstrated that autistic people don't appear to produce enough of this hormone, so the hope is that replacing it will help your child go to sleep naturally.  It was a game changer for our son.  He takes it about half an hour before bedtime and is usually (but not always) asleep within an hour or so.  There don't appear to be any side effects, but there are a couple of caveats; some GP's are not comfortable prescribing it so your child may need to be referred to a paediatrician; also, it's not long-acting... it'll help your child fall asleep, but not stay asleep.  So don't fold your party clothes away.... you might need your glitter and glo-stick at 3am.

Essential oils; in my experience, categorically Do Not Work... but your home will smell awesome.

Weighted Blanket; Theses are great if your child loves the sensation of deep pressure.  My son loves his, and it seems to help him calm down.  They're pretty pricey (ours was about €100) but when sleep has galloped off madly across the desert and is now only a distant speck on the horizon, €100 doesn't seem quite so painful.  You'll find plenty of blanket makers on the internet, and they usually offer to make them in favourite colours or cartoon characters,  It's recommended that they're removed once the child is asleep as there's a risk of over-heating, but I've never found this to be an issue (I actually really like it myself... when we play musical beds in our home I'm quite happy to end up in Finian's bed under his Bob the Builder blanket).

Routine; boring and predictable, but that's the whole point of it.  Ideally bedtime should be at the same time, in the same place, doing the same things.  That would bore most of us into a coma, but sometimes I have to peel my child off the ceiling before I can engage him in anything remotely resembling routine. 
Still, you gotta try.

Reward Chart/Contract; This works really well for my son as a motivator to get him to stay in bed.  He earns a sticker for each night he falls asleep in his own bed.  When he gets 20 stickers (or whatever is appropriate for your child) he earns a treat like a new DVD or book.  At the moment, Finian is working toward earning a spin in his Uncle Oliver's car.  Never mind that Oliver would take him for a drive anytime, doing it this way really floats his boat.... or his Nissan Micra GX.

Removing Gadgets;  I know the logic behind taking away tablets and phones at bedtime, but it's a bridge we just haven't been able to cross yet.  Finian used to have his phone with him until he fell asleep, and gradually (using a reward chart) he is happy to have it for just five minutes after he goes to bed.  That's all very amazeballs, but I have often broke the golden rule of giving it to him when he wakens in the dead of night, just so I can not kill people.  I suppose it's all baby steps, and breaking the odd rule trumps disintegration of body and soul every time.

So that's the long and the short of it;  the only other thing I would add is to box clever when it comes to managing your own tiredness.  I've become something of a sleep ninja, and have been known to drop Fin off at youth club, find a quiet spot in a car park and set my phone alarm for a couple of hours.  Early nights are always good, and spending a half hour dozing on the sofa is ultimately more productive than washing dishes.  

Martyrdom is so last century; get clever, get help and do what you gotta to survive. 

Thursday, 5 April 2018

Autism & Packing

French is like liquid silk being poured in your ear.
I wish we all spoke it; our lives would be poetry in action.
The shopping list would sound like seducing the garlic off the shelves in Supervalu, instead of flinging into your basket beside doughy bread and sour oranges.
Giving out to your kids in French would make them stop hiding mould encrusted plates under their beds and turn them into laundry-folding angels.
Even washing merde off your walls could sound romantic.
Unfortunately for me, fate prepared me for a life less romantic; I studied German at school and spent five years coughing fur-balls at a classroom wall and spitting hard vowels in the eye of  the girl who sat next to me (she spat them right back, so we're even).
 (y'know, the Germans really didn't need to do the whole world war thing to dominate the planet.... they only had to speak to terrify everyone into submission.  As a teenager, I would definitely schnell instead of slither if I had a German mother)

But no matter how sonorous the French language is, no words could exist to tart up a particularly wtf autism therapy they developed.  Hang onto your designer hats, because this one's a doozie.

France has a dysfunctional relationship with Autism.
They remain heavily invested in psychoanalysis and tend to eschew a diagnosis of autism in favour of psychosis.  Many children are labelled as being mentally ill and are institutionalised, instead of being given access to education and a family.  Parent-blaming (particularly mother- blaming) is the norm; an especially frightening case is being fought in the courts at the moment in which three French children have been removed from their family into state care.  The children have all subsequently been diagnosed with Autism, but authorities refuse to acknowledge this and the children remain separated from their mother.  Freud must be happily twirling his moustache in his grave.
It's hardly a surprise that a worrying autism therapy has grown out of such a stubbornly myopic culture.

Psychiatrists in France use a therapy called 'Packing' in which towels soaked in cold water are wrapped around the torso and limbs of a naked, or semi-naked child.  The child is then wrapped in blankets and restrained for 45 minutes.  This is repeated several times a week.   Neuroskeptic reports that the alleged goal of this technique is to “allow the child to rid him- or herself progressively of its pathological defence mechanisms against archaic anxieties,” by achieving “a greater perception and integration of the body, and a growing sense of containment.” 

Read that again, slowly.  
That's a horror show right there, playing on a reel in my head.

The reality of restraining, soaking and freezing your child sounds horribly similar to a post on exorcism I wrote a few months ago.  Obviously, it must be terrifying for the child.  But even more frightening to me, is wondering what kind of person would torture a child in this way, knowing that it has no therapeutic value whatsoever.... and knowing that the care of  vulnerable kids is entrusted to people who think this way is a bridge way too far for me.  When I read stuff like this, I want to grab my kids and move to an island who's only other buildings are a coffee shop and a library  (I suppose a decent off licence would't hurt either).  It's just too much to bear.

It's understandable that in the face of alarming behaviours, we would want to take action.  Over the years some shameful treatments have been employed in an attempt to subdue autistic behaviours; mercifully we seem to be moving in the more human direction of working towards gaining understanding instead of control.  Although we are far from perfect, education of our autistic kids using methods like ABA and TEACCH is producing happier, healthier kids and families.  Autism is slowly becoming normalised within society.
But fear and desperation is never an excuse for child abuse.  
It's one thing to attempt a therapy, no matter how ill-judged, because you just don't know any better.
It's quite another to consciously ignore prevailing research and proven methods just because you're the guy in the white coat.
For the moment, psychiatrists seem to have the law on their side, but even doctors aren't immune to progress.  Pressure is being put on French politicians to change policies by parents who are not afraid to move with the times (wow, that's a lot of alliteration).
Progress is slow and messy, and we can only hope that the momentum for change will gather and continue in the right direction.
In Ireland, we fret about  Autism being treated as a disease instead of  as a neurological difference; in areas in France, Autism isn't even at the races.  In the face of overwhelming research and unparalleled access to information, progress is in inevitable.  But it is a lesson in human nature that sometimes dogma and an almost superstitious belief can trip up our baby steps.

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 bouncy...like 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.

Wednesday, 28 February 2018

Autism & Chiropractic

On the seventh day, God realised he had an awful lot of time to kill, so to give him an endless source of entertainment, he erased the common sense setting in the human brain, and replaced it with a slack-jawed fascination with all things bizarre. 
Like moths to a flame, we are drawn to things that defy all reason and logic and cheerfully ignore evidence in favour of the ridiculous.  It seems that the Big G is a bit mean-spirited behind all his holiness, but I suppose he needs a few belly laughs to help him through eternity.  At some point he mixed it up by throwing in a handful of alternative therapies, and the combination must have had him chuckling into his cosmic ZZ Top beard for centuries.  Humans and homeopathy, aromatherapy and chiropractic (as well as the other usual suspects)  have proved better entertainment than binging on any Netflix box set.  Chiropractic, in particular, is fascinating as it's hugely popular for absolutely no reason.  When we aim to entertain God, we really go for it.

Chiropractic is the external manual manipulation of the spine and joints to treat disorders.  It was founded in the 1890's by David Palmer who, in an event of singular convenience, received his training from "the other world".  I think I may have attended the same school as him when studying parenting skills, where I received a BSc in Threats & Bribery and a Post-Grad Diploma in low grade Substance Abuse .  My son will do just about anything for a packet of salt & vinegar crisps, but if the going gets tough I sometimes have to resort to threatening to dismember Bob the Builder with his own power tools to get him to toe the line.  If these measures fail, there is always wine. 
Luckily, parenting isn't a popularity contest.

Palmer advocated that misalignment of the vertebrae is the source of all illnesses and disorders,  and that adjustments can be applied to the spine, or joints, to restore balance.  No medicine or surgery is required, but some alarming sounding techniques have been imported from the 'other world' to cure all the world's ails;  craniosacral therapy (where the unfused sutures of an infant's skull are 'massaged'), the 'toggle drop method' (where the practitioner performs quick thrusts on the spine with their hands) and the 'activator technique' (where a spring loaded device is used to apply force to a joint) are just a few of the methods used.  Bearing in mind the esoteric origins of Chiropractic I'm a bit disappointed at the lack of dragons and unicorns, and feel it could be really tarted up with a bit of purple smoke and a few glittery crystals.  Battering people's bones and squishing babies skulls seem like pedestrian skills to learn in the spiritual dimension,  but if you don't mind being contorted into positions normally only seen on adult TV channels, then maybe it's the therapy for you.

Most chiropractors seem to peddle the treatment of back-pain as their main bread and butter, but predictably there are no shortage of therapists claiming to treat a colourful array of conditions including Autism, Bells Palsy, hearing loss, IBS, sleep disorders, depression and anxiety, hypertension, ADHD, PMS, migraine etc etc.  One site even mentions treating testicular pain, but it doesn't specify if this pain occurs before or after being presented with the bill.  As with any other quack therapy, my big concern is delaying medical treatment that actually works, but there is also an unsurprising risk of injury being caused by having your spine twisted into a giant, bony corkscrew.  There's a risk of causing new injuries, and a small but worrying risk of an over-enthusiastic therapist causing dislocations, blood vessel tears and worse; in 2009 a 3 month old baby died after receiving craniosacral therapy in Holland, and in 2013 an Australian baby was lucky to survive having her neck broken during a Chiropractic treatment.  But small matters like death and disability do little to affect the booming business of alternative medicine.  

One website helpfully, and with a happy lack of conscience, claims to treat Autism by 'restoring proper neurological functioning', but wanders into the arena of comedy when it suggests that the cost of treatment is "priceless".  I'm tempted to email them to find out if this means the treatment is free, but on balance I'm not sure it'd be worth having my inbox  flooded with spam.  There's no shortage of Chiropractors willing to cure our kids Autism,  and sadly, I'm sure they have plenty of business.

If you're the type of person who enjoys having their neck cracked, you can get it done for free in any Dundalk chipper at 2am on a Sunday morning.  However, if you'd prefer to pay for the pleasure, you can visit a Chiropractor, relax on their comfortable couch and and have them enthusiastically pop your vertebrae at your convenience. 
Personally I'd prefer to get it done for the price of a bag of chips, and if I have my son with me maybe a bit of neck-snapping will cure him into the bargain.
A cure for Autism and a bag of chips sounds like the perfect weekend to me.

Thursday, 22 February 2018

Autism & Social Stories

Kids shows are great. 

Who doesn't love watching a passive-aggressive Mummy Pig emasculate her narcissistic, self-deluded husband, or enjoy wondering when the emotionally stunted Bob the Builder will finally declare his undying love for Wendy (who really is a closet cut-throat business woman and is planning Bob's eventual downfall by taking over his construction empire)?
It's possible I drink too much coffee while watching these shows and my overactive mind turns cartoons into Game of Thrones Jnr,  but there's  more to kids shows than laughing a bit too much at gratuitous violence and knowing that the good guy will always win in the end.

"you are so screwed , Bob"

Humans have used story telling to educate and inspire since we evolved from our cradle in East Africa and used our ability to communicate and co-operate to wipe out every other (often physically stronger) Sapien group on the planet, just because we could tell stories.
Stories are used to build cultures, to teach survival skills and to manipulate minds.  Homo Sapiens managed to create co-operation on a scale not seen before, because we told, and bought into, the stories of religion, or commerce,  or history that enabled strangers to work together towards a common goal.  No other species does this.
The reason we love stories so much is not just that we want to find out if  Norman is the secret love-child of Fireman Sam (two gingers, one small village... go figure); we love them because they fast-tracked us to the top of the food chain.

I didn't appreciate how valuable stories are until my son was diagnosed with Autism. 
Our kids have difficulties coping with social situations that most others take for granted, and cartoons can break them down into concrete, bite-sized chunks using characters they can relate to.  Peppa Pig, for example, has some great episodes on a visit to the dentist, having your eyes tested and buying new shoes which are activities that are a tinder box of anxiety for many of our kids.  Giving a child a clear sequence of events in a relatable way helps remove the fear and uncertainty (although it's probably best not to focus on the marital dysfunction between Peppa's parents.... it's about time they were put to better use as a nice bacon sandwich instead anyway).

not so passive aggressive now

The value of story-telling did not go unnoticed for our autistic kids, and social stories were developed in the early 90's by Carol Grey to provide "short descriptions of a particular situation, event or activity which include specific information about what to expect in what situation, and why".
Like all the best ideas, social stories are genius in their simplicity.  In a similar way to PECS, they capitalise on the autistic child's strong visual style of learning and concrete thinking and can be used to help them deal with self-care, social events, changes and behaviour modification.
Even though we had already used social stories with my son to help him with toilet training, bolting and eating non-edible items,  we really hit the jackpot with them when it came to navigating the choppy waters of puberty.  A few years back his teacher and I put together a booklet explaining to him that even though erections are normal and not such a big deal, that they are best not displayed like a prize-winning exhibit in a Fabulous Penis competition (my son is a proud boy), and that masturbation is not a spectator sport.  Having a booklet we could (and still do) constantly refer to is worth it's weight in gold. As well as helping to teach your child, they can also help a parent who maybe finds it difficult to discuss sensitive issues (although in truth, by the time your child reaches puberty, most autism parents are happily unburdened of any delusions of dignity they might once have had).

(these are a couple of pages from my son's social story on puberty)

It makes sense to develop a social story with your child's teachers so that everyone is working towards the same goal.  There's a great book called 'Taking Care of Myself' by Mary Wrobel that you could use to create and adapt your own.

There's really no down-side to using social stories with our autistic kids.  If only we could use them to teach our neurotypical kids that parents are more than meal-producing, cash-dispensing laundry wizards, we'd be laughing.

Thursday, 15 February 2018

Autism & The Dopey Spider

Once again, I'm publishing an old post from a previous blog, as I'm a bit preoccupied with trying to un-batter our battered house (it seemed like such a good idea when we started).  
Anyway, this was written three years ago, when my main man was 10.  Enjoy XXX

Autism and the Dopey Spider

I have often heard those with special needs being referred to as "slow learners".

It's true that Finian can't comprehend society's fixation with Kim Kardashian's alarming arse.
He can't add and subtract enough figures to cause a banking crises.
He will never understand religion, and so will never hate anyone enough to burn them alive in a cage.

I wonder how many lifetimes will it take to teach us "normal" people (the ones who lie and cheat and steal) what this disabled ten year old kid already knows.
The one who is a "slow learner".
The who who fearlessly loves without agendas or conditions.

So far he has been gracious enough to teach me that most of the crap I consider a problem, is not a problem.
He is a patient (and persistent) teacher.

He has taught me that chocolate hand-prints on the wall are not a problem, but bloody ones are.
I have learned that screaming during a painfully tedious school play (him, not me) is no big deal, but running out in front of a bus is.
I now know that not living in a house ripped straight out of the pages of 'Perfect Home' is fine, and that living in an untidy home full of love and mis-matched cushions is great.

Most of what I consider important, is not important.
Like the best story-teller,  he adopts the "show, don't tell" approach.
He reserves his few words for the important stuff, like hot chocolate and ice cream.

I am a frustratingly slow student, and sometimes I cry and throw tantrums and drink wine in an attempt to avoid his lessons.
But they keep on coming.
If I remind myself often enough to stop being so obtuse, that surrender is not the same as giving up, then I will stop wasting time and energy resisting, and open my heart and ears to learning.
Finian is living embodiment of 'don't sweat the small stuff' and I can only hope that a little of this will finally rub off on me.

Finian is beautifully free from the web of conditions, protocols and unattainable goals that weigh us down and eat us up.
He has attained a level of wisdom that most of us could not hope to achieve in one lifetime.

Y'know, the grandfather of modern physics, Albert Einstein, was once labelled a slow learner.
When people finally listened to him, he altered the entire course of scientific thinking.
Imagine what the world would be like without silicone butts, thieves wearing Armani and religious fanaticism?

And with Finian in charge, there'd be a whole lot more chocolate.