Sunday, 12 August 2018

Autism & Fruit Flies (Reloaded)


As I'm very busy doing nothing on  Spanish beach (totally bragging), I'm upcycling an old favouite from a previous blog.
This was first published in Sept 2015.
Enjoy x






It's rare we achieve any meaningful change without having to navigate some form of conflict, so one of the reasons I'm such a slow learner is that at the first echo of gunshots I'm heading for the hills faster than you can say Dalai Lama.
One reason that I'm grateful to have Autism in my life is that it has challenged, with relentless patience, aspects of my life that I would otherwise have left as resolutely unturned, unchallenged stones.
Autism is a fierce teacher who does not do comfort zones.

This morning I read an intriguing book review of 'NeuroTribes' by Steve Silberman  discussing how a strength (such as intense focus on a narrow range of interests) can suddenly be perceived as  a pathology (perseveration) upon diagnosis with Autism.

Now, having spent  15 years dreading parent-teacher meetings, knowing my oldest (neurotypical) son's  attention span would be compared (unfavorably) to a fruit fly's, I thought it was great that I had a kid who persevered on the same phonics game on his vTech (btw, my oldest son is doing really well for himself... conforming to academic standards doesn't bring out the good stuff in everyone).
For hours.
And hours.
And hours.
He knew the alphabet backwards, forwards, upside-down and inside-out at the age of two, long before he even had speech.
I thought it was great.
So when someone came along and said this is "not normal" I wanted to commit acts which would conclude with the need to hide a body.

But are we stomping  on a huge amount of potential by medicalising what could be a game-changing strength?
By "fixing" their perceived defects are we doing the educational equivalent of telling Usain Bolt "Listen hot-shot, your super-fast running is a bit freaky so we're gonna break your ankles".





There are many thought-provoking arguments in favour of embracing all aspects of neurodiversity. This movement has (shamefully literally) taken special needs out of the darkness and makes the world richer by teaching us that people with special needs have a lot to contribute to society, and can make the world a better place.
People who have Autism often argue that to"fix" their Autism is to destroy a part of who they are; that their ability to perceive the world differently is their very strength.
There is a very real danger we are hobbling generations of potential artists, innovators and world leaders by gently battering their differences out of them.

This I get.

But the conflict is that to remain entirely academic about embracing neurodiversity, and to respect Autism by leaving it untouched and uncorrupted, is to condemn our children to remain  fearful, angst-ridden, shit-smearing, violent, vulnerable, malnourished, marginalised human islands.

While some people on the Autism Spectrum can identify, overcome and capitalise on their differences, most can not.
Without Speech Therapy, Occupational Therapy, behavioural education and a shit-hot education, Finian would still be a non-verbal, self-harming, nappy-wearing, mother-beating, sand-eating screaming ball of fury.
Now he is only some of those things, some of the time.
The rest of the time he is a cuddly, funny, energetic, bright, willful, glorious little boy who is loved without measure and lights up the world around him.

Is it not possible to cherish the positive aspects of Autism while working on limiting the traits that make life suck?
Surely this is not disrespectful to the autistic individual, and is actually just what we do as parents, whether raising special needs kids or neurotypical kids.

Throughout my life I have spent many happy hours torturing my sister Mary about being a professional fence-sitter. "Get off the fence and pick a side!" I'd yell while dismembering her Sindy dolls and drawing stubble on her Michael Jackson posters.
Now I'm beginning to see the wisdom of her ability not to be immediately polarized by a given issue and to be able to consider that there are usually many aspects to the same situation., and that none of these points of view are wrong...they are just different.
Not that I'll ever admit this to her, of course.

The hope of a bit of middle ground might be all that is needed to make room for everyone.
And Michael Jackson looked great with stubble.



My sister sitting on the fence.  True story. 


Monday, 6 August 2018

Autism & Speech Therapy 2.0

Now that Finian is working his way through a block of Speech Therapy, it seems like a good time to re-visit it's impact on his autism (I wrote a post on ST before, but there's a lot to say about it).
I may have proposed that Speech Therapists are a bunch of drunken, pot-noodle lovers (I know quite a few of them at this stage) but this sense of fun and irreverence makes them ideal co-conspirators in the quest to improve the child's communication skills.  The best Speech Therapists work with the child, instead of delivering a one-way system of information that would inevitably be seen as an irritating chore and ignored.  Finian learns best with the singing, gluing, star-jumping, glitter wielding therapists who dive straight in and engage his sense of fun; work becomes a bit of craic and he is learning about uncomfortable abstracts while playing games and shooting the breeze.




But, if like most parents, you rely on the sporadic appointments doled out by the public health service, you have to treat each session like a small piece of high-quality chocolate when you're on a starvation diet.  You gotta pay attention and savour the moment.  It's a precious piece of learning.
By far the most important thing for a parent to do is not only attend the session in body (daydreaming about winning the lottery and eloping with Benedict Cumberbatch might be very pleasant, but you'll still leave the appointment penniless, Cumberbatch-less and none the wiser); the application of your spirit is vital.  The benefits of  Speech Therapy are not confined to a thirty minute session, where you go in, do your thing and ignore the lessons for the rest of your life.  It's like the catholic mass of therapies; you can't just throw on your Sunday best, commune with God for an hour and then piss in your neighbour's eye on the way out the door... it takes a bit more effort than rattling off a few prayers to save your soul.  What you learn from  your child's therapist needs to become a way of life.

After years of attending appointments and workshops, it's easy to become jaded by drip-fed information and painfully slow progress; it's easy to believe you've heard it all, played all the games  and jumped through all the hoops.
But it's always worth dredging up a little scrap of faith and optimism and attending appointments with your game-face on.  There is always new stuff to learn.
The block of SLT we're attending at the moment is  challenging Finian (not to mention myself) to consider abstract notions and intangibles, such as emotions and possible outcomes.  His efforts to avoid and disengage are pretty Herculean, but our therapist has clearly dealt with tougher cases than Finian before; she has an absolute wealth of tricks that blindside him into working unknown to himself.  She gives us just enough homework to keep his neurons fired up, and I'm not above using a little bribery to get the job done. My son would sell his soul for a couple of marshmallows.
It's really healthy, if uncomfortable, to be nudged out of complacency and to keep the spirit alive.  Stagnation isn't good for anyone's soul.

I'm not saying that a good Speech Therapist is the result of the genetic cross-over of a bead-wearing,  life-coach Buddhist and an alphabet Nazi... but if you find one who can wield glitter like a mofo while prodding your child out of his sleepy comfort zone, then you'd best pay attention in class.


Saturday, 4 August 2018

Autism & Unexpected Courage


I wrote this post 3 years ago (when Finian was 11).
It's really cool to see how much has changed (for the better) since then, and how surrounding myself with positive people and ditching self-pity has turned my life from night to day.
Even though Finian has grown bigger and stronger, he's also become more mature and has the benefit of a few more years of education to help him navigate his way through this world.
My point is, fear can be literally sickening; but as long as you are capable of  putting one foot in front of the other you can (as the cliche goes) feel the fear and do it anyway.
Go for it.





(first published 2015)

I spend a lot of time scared.
Of course, Special Needs parents don't have the monopoly on fear...most parents are excellent at worrying about their kids, and even enjoy creating  imaginary worries for entertainment in the small hours of the night.
However, Special Needs parents have an extra-delicious menu of worries to chose from.
Fear is a constant companion, sometimes quietly nipping at the inside of our skulls, or sometimes sitting front and central in our path and preventing us from moving forwards.

Probably the most pervasive fear is  wondering what will happen to our kids when we're gone. Dealing with that is like nailing jelly to a wall....it's impossible to get to grips with, but it's goddamn everywhere.

Second to this is the fear of reaching a point where I just can't do it any more.
There are times I can barely cope with Finian in a controlled environment, so to expose him to the world at large has been a bridge too far for me to overcome.
I have become a champion avoider in my bid to protect him, which is, in fact, a bid to protect myself.



CHANNELING MY INNER SCARDEY CAT




This fear became more tangible when I attended a talk on challenging behaviour at Finian's awesome school a few weeks ago.
It wasn't comfortable to think about.
Being afraid is an emotion I'm much better at avoiding than dealing with. But as the talk went on, it occurred to me that my biggest block to helping Finian cope with this world is my own ego.
It takes humility to expose yourself  to situations where you become vulnerable to judgement.
I would love to be seen as being competent, cool and in control, (with lots of alliteration) and it's much easier to do this in my fortressed house which is so secure I could easily hide John Lennon, Elvis and the second coming of Christ without raising suspicion.
It's easier not to take Finian to my favourite coffee shop for hot chocolate.
It's easier to go without milk and bread than to run the gauntlet of  Lidl with him.
It's easier to stay at home avoid any possible situation where I'm scared and unable to cope.
I don't want people to see me struggle with a large, screaming, thrashing child.  I don't want them to see me as scared, incompetent and hopelessly out of my depth.  And even when Finian is happy, I'm afraid that at any given moment something, anything, could trigger a meltdown that I am powerless to contain.
So the fear is all about me.
And it's preventing my son from enjoying his life to the full and becoming all that he is capable of.


what's life without marshmallows???



For me, one of the scariest hurdles is making myself vulnerable.
Asking for help (and putting myself at risk of rejection) is throwing myself at the mercy of another, and to get real, I would rather chew my own leg off than to feel like this.  But to move forward, this is exactly what I have to do (the asking for help bit, not the leg chewing bit obviously).
But since I attended the talk, I've been taking Finian out on short, planned trips and setting him up to succeed.  I know that sounds like yet another weary soundbite, but keeping our trips short, sticking to the plan and above all keeping Finian in the loop about where we are on our schedule, has given rise to several successful outings.

Identifying, and surrounding ourselves, with good people makes the hurdle smaller and less intimidating.
We've been to Eileen's Tea Rooms, where they give him extra marshmallows with his hot chocolate.
We've been to Burger King where he enjoys chips and coke and has, on occasion, entertained me with the 'Welcome To Duloc' song and dance from Shrek. Actually, he entertained about a dozen people and he can bust some awesome moves.
We've been on forest walks and spent time in the park.
We've even been to Lidl, where a shopping list and crisps helped.
All our trips were kept short and sweet, with an escape plan, and a watchful eye for any escalation behaviours.
This is giving us both an unfamiliar confidence that  makes us want to try it again.

The talk on challenging behaviour, pushed my own boundaries as much as Finian's.
I needed to be reminded that courage exists and that I can use it.
Finian navigates  this overwhelming world every day and is brimming with courage.  He has earned his own Purple Heart  many times over.
I'm following distantly in his wake.

Having the humility to expose myself to judgement and loss of control displaces fear as the focus of our journey, and moves Finian back as the central character to our story.
Just as he should be.

Isn't it ironic that it ended up being my behaviour that was challenged?
Progress happens in the most unexpected ways.





Monday, 30 July 2018

Autism & Rapid Prompting Method

I'm a big fan of rapid prompting.
I spend a lot of time rapidly prompting my kids to brush their teeth, clean their rooms and to at least pretend to behave like normally functioning humans.
It doesn't tend to work, though.
After the first eight hundred prompts they tune out, I get distracted and we all get bored of the sound of my own voice.
The only rapid thing in the whole equation is my decline in authority (which was non existent to begin with but has now descended into negative figures) and the reduction in probability of any of the requests ever being met.
When you're a parent, sometimes being annoying and repetitive is part of the gig  (although despite my tendency to be annoying I like to think I eventually grow on people... like a barnacle... or a yeast infection).  But repetition quickly becomes background noise when over-used, and less-is-more is definitely a more productive way to try to steer your kids between the ditches.

So, when I heard about an autism therapy called the  Rapid Prompting Method, I wondered if  there was an aspect of it I could use to encourage (and definitely not annoy) my kids into getting shit done, as well as helping my son cope with his autism.

This is how it works; a facilitator identifies the student's dominant learning channel (typically visual, in the autistic person) and uses it to elicit maximum correct responses to stimuli.  For example, the student is presented with a statement, which is immediately followed up by a question.   The student may be told "the door is green" and then asked "what colour is the door?".  A couple of options are presented to the student and he is quickly prompted to choose the correct one by a facilitator.  The prompts can be physical, visual or verbal, and the complexity of statements and potential answers increases with the student's progress.
This sounds very similar to Facilitated Communication, a discredited therapy I wrote about a while ago.  However, the founder Soma Mukhopadhyay claims it differs by using her background in chemistry and education; this, she says, gives her a special understanding of how to distract the autistic child from the confusion caused by poor sensory integration.

I have difficulty with this for a number of reasons.

Mukhopadhyay's son is autistic, and no matter how 'scientific' you believe your approach is,  I find it hard to imagine a scenario where your emotions don't get tangled up in your desired outcome.
She refuses to subject her method to scientific rigour, believing that it stigmatizes the students, while also conveniently side-stepping producing evidence that her method works.
Testimonials indicate an unexpected improvement in literacy skills, which makes me suspicious that the facilitator, consciously or unconsciously, is influencing the choices the student makes.
RPM therapists are not recognized professionals, with a code of practice and standards... so this means they are free to basically make it up as they go along, without having to account for their actions.  A four day training course (costing $925) is available in Austin, USA, but an Irish site is coy about charges, offering membership for €20 but expecting the participant to become an active fundraiser.




But mostly, common sense tells me that urging your child to select the correct answer to a question will not cure his autism.  It's like telling me if I point at enough treadmills and salads that I'll be a size 10 athlete.  It's too simple (and nebulous) a solution for a condition as complex as autism.

I'll still keep telling my kids to brush their teeth, but I'll continue to rely on the proven methods of bribery and coercion, instead of Rapid Prompting, to yield any results.



Friday, 27 July 2018

Autism & Expressing Emotions

I really wish I could learn to repress my emotions and give myself a stomach ulcer like a normal person.
When I let my emotions surface, they're like one of those pop-up tents you see at music festivals; I think it's safe enough to let them out, but when the time comes to tidy them away, they just never fold back down neatly the way they're meant to.  That's why so many people pretend they don't own them and run away quickly without looking back (of course that leaves a mess for someone else to clean up, both at the festival and the counsellor's office, but if you cover your eyes and ears and run really fast you might just outpace it). 
Of course, with emotions, there is no 'away'.... what lies beneath will always work it's way to the sunlight in some shape or form; ideally we're super grown-up about our dark stuff and express it in a healthy way through talking, art, music, running a marathon or sticking pins in a Donald Trump shaped voodoo doll.  Otherwise they tend to surface in bad dreams, illness and reckless behaviour (going to a Justin Bieber concert probably covers all three).  When we repress stuff  (and sometimes we have to, if we have other more urgent things to deal with), we often spend more time and energy struggling to avoid it than if we had dealt with it in the first place.
But it's also important to strike a balance.  We wouldn't achieve much in life if we were prostrate with grief over witnessing  Fluffy the Cat casually devour our pet canary twenty seven years ago.  We have to learn to manage our emotions and walk the fine tightrope between allowing ourselves to feel them without getting overwhelmed by them.
Easy.




So, managing our emotions is a tricky business for neurotypical people; throw autism into the mix and we're looking for nothing short of miracles.
Finian is half-way through a block of Speech Therapy and we're working on teaching him to identify and label his feelings.  This is a pretty typical area of difficulty for autistic people, but he's surprising me (as he often does) with his insight, and is reminding me that 'typical' people aren't a whole lot more adept at  juggling emotional  baggage than he is. He's actually a lot better at identifying emotions than I realised, highlighting that just because he often doesn't express them appropriately, doesn't mean he doesn't feel them.  An aspect of autism I've always been a little envious of, is their freedom in expressing whatever they feel, whenever they want, wherever they are.  I suppose it might be a little extreme to drop a designer vase out of the upstairs window because RugRats wasn't on tv (true story), or to block the toilet because wifi was feeling a bit precious (also true story); but finding that sweet spot between repression and extreme dramatics is something worth working towards.



So, the need to work towards healthy emotional expression is not exclusive to autistic people; if we are conceited enough to believe we can teach this stuff, we really need to get our own shit together first.
Good luck with that.

Wednesday, 25 July 2018

Autism; My Family & Other Animals

This post was written in 2010 (when Finian was 6) , but has been reincarnated here due to the sorry situation of having less than sixty hours per day.  It seems I have feed and wash people during school "holidays", and it's tricky finding time to write against a backdrop of hungry, neglected children.
This was not in my contract when I had kids.   Just sayin'.




You would think that my life is complicated enough.
My three kids attend three different schools.
After school there is horse-riding, boxing, scouts, homework club and guitar lessons to shoe-horn in our week.
I have an autistic kid who likes to twang our nerves to breaking point by playing chicken with traffic and dismembering electrical appliances.
He is also an occasional drowner of fish (yes, you read that correctly).


Time management is something other people do.

It is quite nice if we find time to eat and wash occasionally.

But some people thrive on adversity.
Those "some people" being my kids.
I'd rather be burrowed under the duvet watching 30 Rock and drinking tea.  Adversity is wildly over-rated.
But my kids are an odd breed who believe that we should fling our doors open to the animal kingdom and invite them ALL to move in with us.




To date we have the following creatures co-habiting with us;
Two dogs, one hamster, one budgie, six hens, one  nervous goldfish and a cat.
If not for the forceful, and frequent, use of the word "NO!" they would also have added sea turtles, a corn snake, geckos and many, many felines to our numbers.

Now, I grew up on a farm, where animals are meant to do something.
So far, all our menagerie does is cost money and produce a frightening amount of shit.
The hens lay eggs when they feel like it, but mostly they seem to pass the day trying to commit suicide (hens are particularly stupid) and painting their nails.

If nothing else, though, my kids are learning Darwinism first hand.
A food chain has been clearly established, with the cat remaining indoors to avoid becoming a tasty doggie treat, while she terrorises the fish, the bird and the hamster by fixing them with a steely glare and whispering "soon you will be mine".

Although, in our home Survival of the Fittest has been amended to Survival of the Luckiest, as Finian is prone to opening the bird cage and the budgie has (literally) been rescued from the jaws of death on a few occasions.

I suppose Darwin couldn't get everything right.

Having pets is a great way to teach our kids to be responsible, as they learn to care for other vulnerable creatures.

I wonder if I stuck a few feathers in my hair and started squawking (more than usual) , if they would groom, feed and cosset me?
On the other hand I may be fed to the cat, or flushed down a toilet so maybe I'll stay as I am.

Sunday, 22 July 2018

Autism & Instagram

There is no shortage of things my son has difficulty with because of his autism.
He considers sleep more of a suggestion than a physiological requirement.
He views crossing the road as a personal challenge to to test the brakes of  approaching cars, rather than an exercise in health and safety.
He sees conversation as surplus to requirement and only uses words like hot chocolate and salt and vinegar crisps with judicious efficiency.

What he no difficulty at all with, though, is technology.
Give my boy a phone or a laptop and in seconds he can whip up a storm of music, favourite videos and uploads of people discussing their preferred elevators (there's a lot of niche interests out there)... enough stuff to keep an autistic boy content for hours.
Technology ticks a lot of happy boxes for Finian; watching the Teletubbies in Finnish (over, and over, and over...) gives him a bit of predictability and control in a sometimes overwhelming world (even if the most predictable result of this is having a mother who is trying to decide if she should chow down on some xanax or pour neat vodka on her cornflakes... some decisions are tough).  It also gives him the strong visual hit he enjoys; maybe pre-verbal, large-bottomed bears whose mother appears to be a voraciously hungry vacuum cleaner is not the ideal stimulation for an autistic boy, but who am I to judge?  And I'm sure Finnish people enjoy it.


who needs psychoactives when you've got the Teletubbies?



Anyhow, this summer we discovered Instagram.
If you're not familiar with Instagram, it's an app on your smartphone you can use to post photos online without all the wordy bumf of Facebook.  It's simple, utterly visual and perfect for use by an autistic kid and a technologically illiterate mother.
I started using it as nothing more than a bit of craic; I'd take pictures of Finian baking, going for a walk or helping to clean out the chickens.  That evening after I posted them, we'd have a bit of fun looking at them and having a bit of a chat.  So it's great for having a bit of fun with your kid, and also allows me to pretend that I'm amazing and that I'm teaching him conversational skills;  feeling a little less guilty about handing my child a smartphone and going off to have a cup of tea is always welcome (as Dara O' Briain once said regarding guilt, "I may be an atheist, but I'm still a catholic").
But over the weeks, it's evolved a little, and Instagram has become a motivator as well as a reward.  I'm finding I can cajole Finian into trying things he's a little uncomfortable with, like weeding, or chopping herbs, by promising to take a photo for Instagram; he's a lot more likely to inch out of his comfort zone on the strength of adding to our Insta Story, than for anything else.  Yesterday he even had a bit of a bash on a drum kit, when normally I'd find it hard to even get him inside the door of a music shop (it's possible he whacked the drum with a toy saw he had.. apparently this isn't a recommended drumstick and could have caused damage, but who cares about expensive instruments???  My boy hit a drum!!).  The point is, Finian wouldn't have pushed himself to vandalise pricey percussion without Instagram, and it was also fun watching his big brother have a near-death experience over the horror of it all.




So Instagram is a pleasantly positive surprise, as well as an effective guilt-dodger (and occasional instigator of  vandalism), so it's win-win all around.





Thursday, 19 July 2018

Autism; Internet Down

As it's summer, and I have to do ridiculous things like focus all my attention on my family, I'm pillaging posts from a previous blog with shameless abandon.  I wrote this post six years ago, and my technophobia has escalated, if anything.  
Point and laugh at will.




We had no broadband for five days.

Five.  Days.

Say it slowly and feel my pain.

In a house populated by a stomping teenager ("what do you mean I can't use Google translate to do my Irish homework?? That's so not fair!!"), an almost-12 year old having anxiety attacks in case her Moshi monsters die and an autistic kid suffering delirium tremens YouTube withdrawal symptoms, we were in for a rough week.

Having my self-esteem suffer and perish at the hands of over-the-phone engineers in the past, I put off phoning the broadband helpline for as long as possible.
I can change a plug and open a tin of beans but beyond that, my technical abilities implode like a black hole of happy electrical ignorance.  I apologise to all my bra-burning feminist sisters when I admit that I am more than happy to leave all that hammer and drill boy-stuff to...well, the boys.

I held out for 2 whole days.

My children have stumbled on a highly effective method of torture, which coupled with the refrain "are we there yet???" serve to crumble the resolve of the toughest, most battle-scarred  parent.  Eventually, my shattered nerves could no longer withstand the constant chorus of "We're bored!  We're reeeeeally borrrrrred!  We're soooooooooo BOOOOOORRRREED!!!".  
Added to the sad fact that I'm not actually tough, I cracked like an egg.


actual photo of my soul


With trembling hands, and against a backdrop of screeching feral children, I rang the helpline.

I even got to speak to a real human, after several dizzy minutes of having to select incomprehensible automated options.  In my giddy relief at speaking to an actual life-form, I forgot that he was about to eviscerate my self-worth with a torrent of technical questions.



He was especially evil, though.
He lulled me into a false sense of security by asking me to switch the modem off and on.
Easy peasy.
He then asked me to re-set the modem.
Slightly trickier, but he talked me through it and I dared to wonder what I had been so anxious about.
Then he circled in for the kill.
"Is it a short or a long cable?"
There was one cable jammed into the modem, which to my expert eyes appeared... well, cable-length.  And anyway, isn't length relative?  I mean, while it appeared cable-length to me, to a fruit fly it would seem frighteningly long but to a blue whale it would appear really, really short.  I elected to perch on my favourite fence and squeaked "medium".
"OK, I want you to unplug the yellow lead and plug it into another phone socket"
The single grey cable mocked me with it's sullen lack of yellowness.  I informed the engineer of it's lack of sunshiney colour.
Judgmental silence followed.
I willed the cable to change colour but, oddly, it resisted my psychic powers.
"OK" he said slowly "just plug it into another socket".
But where in the name of Jehovah and all his beardy disciples would I find another phone socket?  I knew we had some, but their exact location eluded me.  I sprinted around the house armed with my sulky modem and it's disappointingly grey wiring, searching under beds and behind wardrobes for a socket to plug it in.  I could have won outright first place as Worst Contestant Ever in the Crystal Maze. I pictured the engineer rolling his eyes and wondering who allowed this woman, who didn't even have the decency to be barefoot and pregnant, out of the kitchen. Finally, breathless and sweating, I found it, plugged it in and waited for the lights to start flashing.

Which they didn't.

"It's still not working" I wailed, shaking, but also relived that my ordeal must finally be at an end.
But there was more.

"I want you to disconnect all landlines and I'll call you on your mobile with further instructions"
But I could take no more.
Shame-faced with defeat I mumbled "my husband will call you tomorrow".
"That might be best".

I might as well have burned Emily Pankhurst and Germaine Greer with red-hot pokers while laughing at the silly notion of women breaking glass ceilings and voting and stuff.

I also couldn't help feeling a twinge of nostalgia for simpler, pre-internet days and wondered what exactly do people have against carrier pigeons and smoke signals.

Monday, 9 July 2018

Autism & Sleepless Nights

Autism allows you plenty of time to entertain 4am thoughts.

Now that school is out, Autism is front and central , and consumes me.  It's hard to know what the right thing to do is; if I should struggle against it to try and remember who I am, or if I should let go and surrender to it's relentless current.
The urge to hold onto my identity is strong...  I want to read and write and create beautiful things.  I want to have real conversations with real people instead of snatched online sound-bytes.  I want to go shopping with my daughter before she leaves home.  I want to figure out if there is any part of me left that is interesting or creative.  But Autism is voracious and hungry; it primes your adrenals, it doesn't let you sleep, it makes you lonely.  And it just doesn't stop.
Some schools of thought believe it is better to meditate these wants away; if you don't want rest, or fun or friends, then their absence won't hurt you.  It takes a fair bit of energy and concentration to maintain this, though, and when my guard is down, self-pity sneaks in the back door.
I could use the small bit of energy I have struggling to breathe air into a spark, when I'm not even sure the spark exists.
Or I could just stop trying and surrender to it's riptides.

I can see how precious it is to be able to sleep through these thoughts; to express them in dreams that make no sense, or lose them in the deep, silent night.
Until sleep comes, keeping a hold on the real world is a slippery business.


Thursday, 5 July 2018

Autism & Patterning

We all love a nice pattern.
Interpreting patterns has helped us survive as a species;  following the migration habits of wild animals helped us hunt, and observing the sequence of seasons and plant growth helped us develop agriculture.  So patterns are handy sorts of fellas, besides looking pretty; they also helped catapult us to the top of the food chain.
So, spotting patterns is important.
We can predict rain when swallows fly low over water; don't know if that's true or not, but it makes me feel wise and earthy saying it, like I should be wearing a shawl and stirring ancient runes with an old stick, saying sage things like "the great spirits foresee a time of civil unrest which can only be averted by distracting the masses with iPhones and Love Island" (I look awesome in the shawl, by the way... like Peig Sayers' better looking sister, with less personality issues).
We translate a whirl of clouds into the Virgin Mary; although, why on earth would she chose to hang out in something as insubstantial as clouds when she could incarnate as Judge Judy and clip people round the ear for being assholes? I suppose seeing her in clouds is keeping her at a safe distance; she's too far away up in the sky to hear her giving out to you to tidy your room or go to mass.  That's why people don't conjure her up from a bunch of bananas in Lidl; proximity means they'd actually have to listen to her and do something.
We ascribe meaning to a random jumble of coincidences and come up with numerology or astrology (or it could be physics... I'm always mixing them up, but they're much the same thing, right?).  Placing things neatly in categories is less scary that entertaining the notion that life is capricious and arbitrary; life doesn't care if the arrangement of a certain sequence means we win the lottery or get cancer.  Patterns are a comforting security blanket to snuggle us away from cold reality.


Rockin' the look


If you hang out enough with autistic people you'll get a very tangible sense of how important patterns are; predictability and patterns help us to create sense and order in an overwhelming world (unless you're like me and are drawn to retina-scorching patterns that could be classed as a seizure risk... I suppose there's an exception to every rule).  So, patterns make us feel safe (often for good reason), but we're so hung up on them that sometimes we see them where there are none.

Patterning is a sequence of exercises and passive movements designed to improve the neurological organization of the autistic person (among other client groups).
It is thought that each infant is born with a primitive set of reflexes which guides them through the milestones of crawling, sitting, walking etc; the idea is that as each milestone is achieved, neurological feedback reports back to the brain and the primitive reflex is 'switched off', allowing normal development to continue; so, kids who do not reach the various milestones are stuck using primitive reflexes and are in a state of arrested development.  Patterning aims to identify and inhibit the primitive reflexes to promote normal functioning.  At £1500 per programme I'd quite like a new bag or a pair of shoes thrown in with that (with or without a snazzy pattern).
Research Autism found that although Patterning isn't harmful (except to your wallet and maybe your hopes of  a nice holiday this year), that they can't support it as a therapy as it is not research-based and draws on out-dated theories of neurological development.   In fact, it was discredited as a therapy way back in the 1970's, but somehow it never got the memo that it had died and has been resurfacing under various guises ever since.
If you come across it, just don't bother.  It's a waste of time, energy and money; moving your child's limbs into various positions will not cure his autism, and spending the price of a short holiday on it doesn't make it any more valuable.
Chuck it in the red herring bucket (which is getting pretty crowded by now) and step away from an expensive piece of quackery.





Sunday, 1 July 2018

Autism & Coconut Oil

Unless you live in a lead-lined, hermetically sealed bunker in the darkest hole in the deepest ocean, you'll know that coconut oil is a thing.
I know coconut oil is a thing and I live in a bog in County Monaghan.
Even coconuts know they're a thing, and are relishing their moment in the sun after  decades of being outshone by showy fruit and improbable superfoods.

Coconuts aren't beautiful; they're obtuse, hairy and big-bottomed (...wait a minute.... are we still talking about coconuts here or am I writing my obituary???) and in Ireland we were never quite sure what to do with them unless they came in a Bounty bar or a bottle of shower gel.  They also suffer a pretty epic identity crisis ; they can be described as a fruit, a nut or a seed... it's like looking in the mirror each morning and trying to decide if you're going to dress like an embryo today or if you're going for more of a wizened hag look (FYI, the wizened hag look isn't very in right now, but it's epically low maintenance).  It has to be confusing.  It's little wonder they spent years sulking like an unloved child among pretty extroverts like mangoes and starfruit.

To heap chaos onto confusion, coconut oil isn't even an oil.  An oil is liquid at room temperature, and coconut oil is sold as a solid, waxy resin.  The bombardment of mixed messages coconuts have endured at human hands amounts to emotional abuse; we've PTSD'd the fuck out of them.  Maybe to compensate for decades of psychological torture, we've decided to pimp them up with an exciting new identity and rebrand them as a superfood?  We took a dumpy, traumatised fruit/seed/nut and had it shaved, smashed, eviscerated, pulped and processed into a grease that bears zero similarity to its original self; then we poured it into humourless, environmentally -friendly glass jars that have a serious message for all humanity.
Almost overnight, coconuts became rock stars.

Those clever marketing people have whipped up an absolute storm of things it does and cures; it can be used for cooking, cleaning, treating, curing, anti-aging, as a cosmetic and, most usefully,  as something to mask the overpowering smell of having your house full of teenage hormones on legs.  They make it sound like something I'd quite like to marry.



actual selfie



Inevitably, though, like the killer hangover you dread after a wild night out on the tiles (or half a bottle of wine listening to dodgy music in my case... I'm a cheap date) an avalanche of stories crediting coconut oil to curing autism have followed.  While coconut oil is fairly nutritious (apart from containing enough saturated fat to worry the heart of small elephant), cure is a bold claim.
I'm not quite sure if you're supposed to slather your kids in the stuff and fry them, or if you feed them with it, but salespeople are getting very excited at the prospect of flogging another red herring to autism parents.  Their websites contain words like 'miracle!' and 'amazing!!' and have a pretty unbalanced exclamation mark to fullstop ratio (those sites do enjoy a good shout).  They throw in a bit of sciency backchat about long-chain polysaccharides and low-density lipoproteins, but it means nothing.... if you keep frying your eggs in coconut oil you'll end up in a cardiac rehab clinic and you'll still have autism.

So, take it easy on the super-oil, you crazy kids, to avoid becoming a great-smelling, coconut-shaped corpse.  There's not much in this world worth risking your health for, especially when the benefits are as unlikely as Kanye West finding a non-Kayne West shaped God.  Have a bit of craic with your autistic kid instead, eat the odd Bounty bar and worry less about changing the good stuff you have.


empirical evidence supports this






Friday, 29 June 2018

Autism & Puberty

Fifteen years ago, when I was pregnant, my biggest concerns centred around hoping I didn't split in two like an over-ripe melon before the child inside me decided it was time to look for alternative accommodation that didn't  lead to my inevitable explosion.
I was anxious about expanding to a point where I exerted my own gravitational field, and that I'd start controlling tides and planetary orbits with my sheer roundness.  In pregnancy I actually could  have become the centre of the universe.
I hoped that my husband was making a decent job of shaving my legs, I'd forgotten what my feet looked like, and I hadn't been able to paint my toenails in months.
And then there was the labour to worry about.... even though I'd done it twice already, the unlikely mechanics of squeezing a new human through an impossibly small pinhole always baffled me; it's a glaring design flaw with the female genitals.  God really needs to sack the engineer and recruit someone from 'Wombs that Work' or 'Designer Vaginas'... it's the equivalent of trying to force a basketball through your nostril.  It isn't fun for anyone.
The bible was spot on when it said it's easier to pass a camel through the eye of a needle than to get to the kingdom of heaven... I'm beginning to suspect that the holy book was written by a midwife.
And I'm not for one moment suggesting that some babies look like camels (even though some of them clearly do... did I say that out loud???).  It's no wonder they all look a bit squashed and irate when they finally battle through to the outside world.


"It's a boy!"
                                                                 

But I shouldn't have bothered worrying about any of those things at all.
What I should have been worried about was the fact that one day I'd have to teach my teenage autistic son that it's not cool to sport an erection, no matter how fond of it he is, while watching Postman Pat in the living room.  Postman Pat isn't even that attractive.
Big mistake, and a total misuse of good worrying time.
If I'd known what was ahead of me, I would have fearlessly taken on labour like a champion fighter (albeit with the help of some excellent class A drugs) and displayed my back-combed hairy legs without a care.
It would have been much more economical to place all my fretful eggs in a giant basket of puberty and just put it to one side for a decade or so; I could have really enjoyed all my lesser worries if I'd known that this doozie was quietly waiting it's moment to hatch into a fearsome gruffalo.  It dwarfed all my other worries into cuddly teletubbies by comparison.

'Puberty and Autism' sounds like a floppy-haired boy-band who'd expire immediately if they came into contact with sunshine and fresh air, and who take themselves way too seriously.
Sadly, though, they're not that easy to ignore.
Puberty and Autism go together more like Thelma & Louise, where two utterly mismatched people  are flung together by fate, forced to career across the country in a stolen car, murder people and finally drive over a cliff.... Except Thelma & Louise water the whole experience  down a little too much.

Now that fine black hairs are appearing on my son's upper lip, I find myself  seriously considering  allowing him to grow a knee-length beard rather than using a sensory nightmare to do battle with his face.  In fact, puberty pours a bucketful of sensory overload onto the autistic person in lots of aspects; in our home it's caused my son to become sweatier, stinkier, more emotionally volatile, less able to indulge in a full night's sleep and more likely to want to marry cartoon characters and make strange hybrid babies with them.

Of course, the best approach to puberty is to prepare for it early (and I don't mean by having a fully stocked wine rack.... although that helps).  Teaching your child to keep his crown jewels under wraps outside of the bathroom is a good place to start, ideally from an early age.  There is nothing cute about a fourteen year old boy streaking through the kitchen because you didn't give him his favorite pyjamas.  Teaching the notion of privacy isn't about prudishness... it's more about avoiding arrest for indecent exposure  in their teens.  Teaching your child to have a shower every day and to use deodorant helps them deal with their overnight transformation into a six foot tall sweat gland.  It's good to have a head start on all this stuff so you're not heading into puberty on the back foot.
It'd be really worth your while to attend a course on autism and puberty, even if you rather chew your own leg off than learn about proactively allocating your child private time for nudity and masturbation (this is much better than re-actively 'punishing' your child by sending him to his room every time he gets an erection).  I have to say, I have many moments where I feel like a Talking Heads song and wonder "My God, how did I get here???".... taking my son to his room for private time was never on my bucket list, but my bucket just seems to be getting weirder as I get older.  Sometimes you just gotta go with it.

But, besides the shaving, the sweating, the acne, the twitchy genitals, the smelly feet, the moodiness, the tantrums, the lack of sleep and the explosion of your baby into a man-sized oil-slick, puberty and autism is a walk in the park.
Jurassic Park.







Tuesday, 26 June 2018

Autism & Faith Healing

A couple of days ago, we had an Autistic Day.
We don't live in a pick n' mix world of  neurotypical vs spectrum days; obviously my son has autism every day.  But mostly he is sweet and funny, and his autism is just another colour in his gorgeously spectacular rainbow.  Now and again, though, his autism amps up to become a screaming beast on steroids and we have spells of slammed doors, airborne electronics and shattered eardrums.  Nothing is sacred, and he'd smash an XBox as quick as break a dozen eggs (thankfully he rarely self-harms or lashes out these days), but these spells serve as a dour slice of realism that he has a debilitating, and permanent, condition that restricts his (and our) lives.
It's like throwing the odd bucket of icy water over our sleepy existence,  just to remind us that it's there.
On days like this, I survive by relying on past experiences and having faith that it'll pass; it's just a matter of dropping all the other balls I'm juggling, calming his overwrought nerves and waiting for the storm to pass.
It always does.




Having faith based on predictable past experiences is one thing; it's quite another to invest your faith in something as flimsy and unreliable as hearsay, especially when that hearsay is inflamed by desperate hope and unwillingness to accept reality.

Faith healing is huge business, because there is no shortage of  people stuck in a cycle of hopelessness and denial, and no shortage of people ready to capitalize on this.
Well-intentioned prayer or good wishes is kind and benign, but when faith grows an ego and believes it can cure conditions (or manipulate other people into believing this, usually at a cost), all the good intentions are worth little.  Faith healing is believing you can heal by prayer, rather than science-based medicine, and has become such a problem in Finland that doctors are lobbying the governemnt to regulate it's use.
Cyberspace is positively crackling with stories about people being recovered from autism by prayer. The videos and anecdotes consistently fail to mention the years of education and therapies that preceded the 'cure'.... hard work may eventually reduce the outward signs of autism to a point where they are no longer detectable (which doesn't mean the person is no longer autistic, just that their overt behaviours are managed).  I sometimes wonder if people who invest their faith in religion find it more comfortable to credit their child's improvement in  something supernatural (and in this way justifying their beliefs) than recognizing the more pedestrian truth. This must seriously piss off teachers and therapists, and begs the question of where God got his professional qualifications.  It's like the dark mirror image of  blaming the onset of autism to the MMR, because it's given around the time parents first tend to notice signs of autism.  It's easy to pick a convenient untruth to support our beliefs.

Getting real is not so easy, though.
I have no issue with anybody's faith, on the whole, and I understand that it's a deeply personal (and often social) part of a person's identity.  While praying for a child to be cured of autism does not, on the surface of it, seem harmful, it does point to a lack of acceptance of the child as he or she is.  No matter how 'disabled' a child is, they're bound to pick up on the fact that their family wish them to be different, and that they are less than perfect as they are.  Where autism is concerned, I think faith healing can inflict dreadful emotional damage.  To me, it would make more sense to pray to accept and cherish the child you have and to love him without condition, not to magic him into a less inconvenient normal child.  Equally, any organised religion would be a lot more  christian if they offered tangible help instead of  perpetuating someone's wish for things to be different.  Wishing for things to be different, when they clearly can't be (such as in the case of having a disabled child) does nothing more than inflict mental suffering, and really, it's a type of cruelty to cement people into this mindset instead of guiding them out of it.

Prayer, in whatever form, can be great, though, as long as it's not used to muddy the waters of reality.  While I don't believe in the God that was drummed into me as a child, I do believe we are all part of something much bigger than our individual selves.  We experience this world through a very narrow range of senses, so our knowledge of how things work is pretty limited, but I believe we are all here to make the world a better place in whatever way is available to us, be it having kids, playing the fiddle or sweeping the streets.  How we manage the cards dealt to us is our choice.  I pray, or meditate, by clearing my mind of the rash of jumbled conscious thoughts to find the important stuff underneath (the rest of the time I'm a basket case... life is all about balance) and this helps me to accept and love what I have.  I find it hard to stomach oppressive, controlling religions that practice the opposite of what they preach and do little to reflect the words of a pretty cool sandal-wearing hipster from a few years back, who basically told us not to be assholes (but we're very slow learners).  I actually don't think there's a need for organised religion at all (history shows that they inflict a lot more harm than good) and that spirituality is your own business... unless it's used to sell lies and false hope to emotionally stuck people.

Doctors object to faith healing on very good grounds.  As well as delaying people from seeking medical help that actually works, it's also damaging on a much deeper level.
If you pray, use your hotline to JC to say a big thank you for the awesome kids we have, instead of wasting your precious time chasing shadows.