Autism & Definitions 2.0

A few weeks ago I wrote about how the official diagnostic criteria for Autism is often at odds with our lived experience of it.  The DSM-V is a necessary, but blunt, instrument.  It effectively diagnoses (or rules out) Autism, but neglects to mention many of the more colourful expressions of it.  That's not it's fault.  It's remit is that of a workhorse, not a show pony.  But it dulls the picture by brushing broad, two-dimensional strokes over vibrant personalities.  It's kinda a mood killer like that. 

For example, the DSM says it's looking for evidence that your kid has difficulty adjusting his behaviour according to social contexts.  In the real world, this clinical-speak may translate as your kid taking a dump in the display toilet on the shopfloor of B&Q (because a toilet is a toilet, right?).  But it doesn't spell this out in it's criteria.

Someone should give the DSM a box of crayons so it can express itself a little better.  You really don't want to get stuck with it at a party.

So I'm building on the Trojan work I slaved over in my previous post, by adding to my alternative diagnostic criteria.  

(sidebar; my legal team have advised me to add a caveat to my ground-breaking body of work;  it can only reliably diagnose Finian.  But science is science; the facts don't lie)

Here's more tell-tale signs that the DSM leaves out;

• experiencing the need to chase a naked man-child out of the kitchen
• being so accustomed to said man-child's nudity, that you sometimes don't notice him shake his jelly at the dishwasher
• only ever buying him long-sleeved tshirts because short-sleeved ones are stupid
• knowing who the fucking Enchantimals are
• nodding enthusiastically when a worried electrician points out that a mouse must have chewed on your cables.  Yes, Mr. Electrician.  An impossibly handsome, autistic "mouse"
• realising that everything you ever learned about nutrition is wrong.  It has been scientifically demonstrated (mostly in my house) that a human can thrive on a diet of nothing more than weetabix, mashed potatoes and pancakes.  In your face, Healthy Eating Pyramid
• knowing how to calibrate Lidl weetabix to the perfect temperature and consistency, or risk starvation of said man-child (altho......  I can't decide if this is an autistic thing or if my son is just a massive princess)
• with the above exceptions, noticing that your kid eats everything in the known universe except actual food
• when you elevate tooth-brushing to an exercise in stealth and tenacity, having first developed the fine motor skills of a master pianist.  If tooth-brushing requires Olympian hand-eye co-ordination, and has become all about hitting a moving target with colgate, then your kid may be autistic.  Just sayin'
• briefly considering leaving your adult-kid alone while you nip out to buy milk, but then remembering that you quite like it when said kid is alive, not on fire and boasting a full complement of limbs.  The kid always goes with you to buy milk
• when your kid enjoys wearing his (tiny) sister's pyjamas.  Commando.  The sister requires much therapy..... and frequent new pyjamas

I hope you find this helpful.  Out of the goodness of my heart, I'm sharing this cutting edge diagnostic tool with you for free.  However, if you'd like to show your appreciation by gifting me a two-year holiday in Barbados, or sending me a small lake of rioja, I graciously accept.

my legal team

Autism & Electronics

 I am in awe of neanderthal autistics.  

To narrow the timeline a little, I am in awe of any autistic person who existed prior to this shiny, new milennium.  Specifically, I am perplexed as to how they survived.

In the same way that a fish needs gills, and a bird needs wings, an autistic kid needs a smart phone grafted like an extra limb onto their body.  In time, maybe evolution will do the decent thing and genetically predispose autistic kids to sprout an iPhone from their wrist.  In the meantime, we have to settle for making Apple investors laugh all the way to the neurodivergant bank.

This morning, a Twitter mum commented on the guilt she feels over her kid's reliance on gadgets.  Perverse as it is to take pleasure in someone else's distress, I was DELIGHTED that another parent feels as inadequate as I do.  It's always nice to have company in the shit swamp. 

I did a quick audit on Finian's current electronic inventory.

He owns a smart phone, a dvd player (inc tv), a portable dvd player and a nintendo.  As well as having access to the family TV and desktop.  And this doesn't include the various iPads, laptops and smart phones he robs off his family members (he laughs in the face of passwords... cracking them just adds to the fun of it).

I am more than aware of how awful this is and how summary execution by the parenting police is just too good for me.  My mothering skills seem to have been learned from a manual co-written by Myra Hindley and Cersei Lannister.  A Good Mother would spend 16 hours a day enaging their kid in finger painting and visiting museums, in between baking organic gf/cf meals and worrying about their gut biome.  

Meanwhile, I feed my boy Nutella on pancakes and allow him free access to the internet, hoping that I won't die of inadequacy by bedtime.  Some days I even get dressed before noon.

I stopped feeling guilty about the use-of-gadgets thing ages ago.

All week, Finian works hard at school.  The rest of the time he is working harder than we can imagine to survive in a world not designed for him.  If he can find some relief, and even a little pleasure, in watching Peppa Pig passive aggressively body-shame her father, then I'm down for that.  

I'm just a little horrified for the generations of pre-millennial autistics who didn't have cyberspace to save them from going insane.

Peppa, that fat-shaming whore

Autism & Definitions

Earlier this week someone asked me to explain autism to them.

This question never fails to stump me.  You'd think after nearly 18 years, I'd have a clear definition of it.... but I'm not even close.

Autism can be explained clinically in terms of the DSM-5 criteria.  This is necessary for clinicians to diagnose our kids and signpost them towards appropriate services.  But, from a parent's point of view, it does little to describe the lived experience of having an autistic kid.

Autism is deliciously spectrummy; everyone has their own unique flavour.  So this is how I choose to outline it in our home;

It's being able to speak fluent Bob the Builder.

It's knowing the difference between a tantrum and a meltdown.

It's hoping that the brown stain on the wall is Nutella.

It's loving the joy found in sporting a My Little Pony backpack.

It's a crash course in freeing yourself from any delusions of grace or dignity (both massively over-rated traits).

It's happily holding hands with your young adult kid in public.  And not just because he might play truth or dare with the traffic.

It's knowing your 6ft 3 son will attempt to sit on your knee for a cuddle.

It's knowing you will totally make that cuddle happen.

It's counting each nail you clip in Albanian.

It's having over 3000 episodes of Enchantimals recorded on the TV (true story).

It's accusing your kid of eating your purse when money goes missing.

It's developing a linguistic shorthand with your family;  yesterday my husband randomly said "we can't do that til we do the other thing" and I knew exactly what he meant.

Ditto with autism-parents you are friends with.  When you say you're having a hard day, you know they get it.  No further words necessary.

It's feeling disorientated if you get a full night's sleep and feel normal.  It's just weird.

It's having the most expensively accessorized septic tank in the country because your kid has eaten most of your jewellery.

It's learning from your kid to ignore convention and to carve out your own path.

None of this makes the diagnostic criteria, but it describes Finian's wavelength on the autism rainbow.

Autism & Admin

Today's story, friends and neighbours, is 'How To Crush the Soul of a Special Needs Parent'.  

Recently, I lost my Carer's Allowance and had to make a phone call to see if I was still eligible for Carer's Respite Grant.  This is how it went.

I dial the number.

An automated message kicks in.  In Irish.  The length of the message makes me wonder if I misdialed myself into a gaelic version of Homer's Odyssey.  I don't speak Irish so I can't be sure.  The only thing I can do in Irish is to ask permission to visit the toilet, or invite someone to kiss my arse.  These are both useful phrases tbf, but of little utility for today's purposes.  

Finally I get an option to select English.  I can only guess that the robot-man repeats what he has just said in Irish..... something involving websites and recording.  It bumbles into an incoherent drone after about 15 seconds.  As a numbing agent, it could be of use in anaesthetics in lieu of medication.  I feel nothing but the pressing urge to sleep with immediate effect.

I keep myself alert by gazing at my reflection.  I think I can actually see myself aging.

Eventually, the robot-man (who seems to have confused his job with reciting a twenty-seven verse lament), begins to list The Options.  Of which there are roughly 4000.  I am bored by the third one.  I consider making tea.  Then I worry that my tea distraction caused me to miss my option.  I experience a disconcerting mixture of panic and apathy.  My brain implodes a little.  I definitely should have made tea.  I select the option for the operator.  The line connects and makes what sounds like mating noises with another line.  I feel voyeuristic and a little icky. I want to have a shower.  Then, I feel a flash of excitement as the line makes ringing tones.  It clicks into life.

The automated message begins again.

The darkness of coma presses the edges of my awareness.  It is madly seductive.  But I have survived surgery, illness and three labours;  I can endure this.  Finally the message ends.

Then the "music" starts.

Self-harm isn't really my thing, but I wonder if pouring bleach in my ears would lessen the pain.  I really wish I had made tea.

Then..... result!... an actual living, breathing human being answers the phone.  Except I quickly become mistrustful of the living, breathing bit.  "Hello"  he wheezes.  With an optimism I don't truly believe, I explain my query.  Silence.  I fear the effort of speaking may have killed him.  "Hold on" he finally rasps.  My relief that I haven't murdered him is short lived, however, as once again the lines make their robot sex noises.  

The automated message starts again. Then the music.  I consider sticking my hand in the toaster to defibrillate my fading heart.  

But..... joy of joys!.... another human answers.

"Housing benefit" she says.

My life flashes before my eyes.  I focus on not looking at the light.  I'm not ready to die yet.  I explain my situation, weak with hope that maybe she can help me.  "Hold on" she says.

I now have new respect for the term 'hold on'.  It's more than just an invite to brace yourself for a few moments of drifting in cyber-void.  Really, it's a grim warning to cling to your sacred soul as the life-force is bled from your veins.  Underestimate it at your peril.  

More pornographic connection noises.  The automated message reanimates.  I bury my face in my knees.  My daughter comes into the kitchen, makes herself tea, gives me the middle finger and runs away laughing.  I deeply regret my decision to reproduce.

My eyes glaze.  Outside, it starts to rain.  I feel myself being lulled to sleep.

But..... miracle divine!.... another human.  She asks for my mother's maiden name as a security question.  I am convinced this is some kind of sick test.  At this stage I struggle to recall my own.  

I dredge up the required details from the porridge between my ears.  The human is satisfied and agrees to send me out a form.

I collapse, make a small vat of tea and plan revenge on my reprobate daughter.  I have survived another Trial of the Special Needs Parent.

Carers in Ireland save the government roughly €10 billion per year.  It is means tested, but not only on my loss of income due to giving up employment to care for my autistic son.  The salary of the person I happen to be married to is considered to be my income.  The unfairness of this is sickening, but most of us are too exhausted to take the government to task over it.  In a weird Alice in Wonderland logic, we are penalised for working and paying tax.  It would be funny if it wasn't real.  

 

Autism & Insomnia

 I don't sleep well.  

After years of hospital night shifts, babies and an autistic insomniac kiddo, I'm kinda suspicious of people who close their eyes and immediatly sink into oblivion.  

For eight ridiculous hours.  

I mean, what kinda weirdo sleeps for eight hours???

Sleepers are sorta smug fuckers.  They talk about sleep hygiene as if room temperature and meditation will recalibrate my broken pineal gland.  There's an implicit subtext of blame that I'm doing something wrong if I can't obediently nod off.  But when my melatonin making machinery is in the bin, along with my ability to tolerate valerian-laced tea (tastes like feet), I get to ignore the finger wagging.  

Oddly enough, the sleep gurus never include advice on recalibrating a giant (albeit gorgeous) autistic man-child who considers sleepiness a personal challenge.  They also never advise on how incredibly loud his feet are at 4am.

But there's a really cool upside to insomnia.

One of my greatest pleasures in life is drinking tea in bed, in the dead of night, when the house is silent.  I get to experience a depth of serenity that eludes me during daylight hours.

I hear the fridge humming.  I see faint bars of light and hazy refelctions in the darkness.  I feel the warmth of my husband's hand on my belly.  I feel the weight of the duvet wrap each toe.  I hear and feel at the edge of awareness.

Silence is crowded with ordinary magic.

No pressing jobs scream for my attention.  There are no constant, heavy footsteps.  There is no echolalia.  There is an absence of anxiety over the whereabouts of my boy.  Gadgets are powered down.  Urgent red lights have snuffed shut on tv screens.  

I listen to the dogs shift in their baskets downstairs.  The air tastes soft, sweet, velvety.  I am aware of the vast, dreaming sky arced outside my window.  Somewhere, I hear a fox cry.

Sometimes, I hear Finian talk in his sleep.  I wonder what he dreams about.

Sleep would rob me of this experience.  I'll take my joy where I find it.

Autism & Abortion

There is no doubt that life is hard when you have an autistic kid (or kids).  Autism derailed my career, finances, friendships and world view.  It caused me to neglect my older children.  It threatened my relationship with my husband.  It kicked my mental health square in the kidneys when I was already struggling to stay upright.  It makes a long, safe, productive life doubtful for Finian.  None of this is news.  I don't feel sorry for myself.  It is what it is.

A question, which refuses to be ignored, has been tapping insistently at the inside of my skull all morning.

If, 18 years ago, I knew that I was pregnant with an autistic child, would I have had an abortion?

One of my dearest friends sent me an article today describing ongoing research in Harvard.  MRI scans of 39 unborn foetuses (at 25 weeks gestation) show undeniable anomalies in the brains of those who go on to be diagnosed with autism.

(for the nerds at the back, the insula is markedly larger in autistic babies than in neurotypical children.  This part of the brain manages sensory processing, motor control, self-awareness, autonomic nervous function, decision making, emotional control and conscious desires.  So it's kinda important).  

These findings haven't been peer reviewed yet, but researchers have been confident enough to issue a press release about their progress. 

My friend asked "what d'ya think?"

My mind immediately pole-vaulted over the bit where they said that early detection equals early intervention. In an ideal world that would be wonderful.  But any autism parent will tell you that services are sorely lacking as it is (unless you pay for them).  Putting more pressure on an already underfunded service is unlikely to yield much benefit.  

I wondered, what I would  actually do with that information if I had it?

So many friends of mine have broken marriages.  Most are on antidepressants.  Few have fulfilling careers.  All are exhausted. Most of us will tell you that it's the relentlessness of autism that's the killer.  

It just never stops.

I won't sugar coat autism.  It really is shit.

But.

I don't believe life is meant to be easy.  I believe we are given opportunities to transcend, or alternatively be consumed by, adverstities.  Autism has pushed me to (and beyond) my limits of endurance.  And yet I still love my son and would happily die for him.  I would not be the person I am without autism.  I would not have the genuine relationships I have in my life without autism.  Autism has helped me become the best version of myself.

That said, if I knew of the trials I had ahead of me, I can't guarantee that I wouldn't terminate the pregnancy.  Abortion would spare myself, my child and my loved ones a lifetime of pain and adversity.  Who in their right mind would consciously chose that, if there were options?

But I would also have robbed the world of my loving, infuriating, hilarious, beautiful boy.  Life without Finian is unthinkable.

It's a chewey question.

Maybe these findings will lead onto treatments to limit the effects of ASD pre-natally.  Maybe they'll lead onto earlier screening indicators, meaning parents could chose to abort earlier (abortion is legal up to 12 weeks in Ireland and 24 weeks in the UK, except in exceptional circumstances).  Maybe they'll prompt the purse-holders to value a neurodivergant society and properly fund support services.

The one thing that needs to be removed from the conversation is judgement.  

I'm sure most autistic people are glad to be alive.  Autistic people make the world bright and interesting, and prompt us to be better humans.  But there have been enough incidences of murder-suicide to show how hellish living with autism can be.  The reality of our vulnerable kids being at the mercy of strangers after we die, is also an ever-present spectre.  

There are more grey areas around life with autism, than there are black-and-white answers.

big love 

Autism & Noise

My home is noisy.

I sometimes can't put a shape on my urgent need to escape, or why the persistent buzz of anxiety exhausts me.  I love my family.  I have purpose and joy in my life.  Yet I crave a roaring ocean, a stormy forest, a vast, empty sky.  I ache for restful birdsong and seasalt on my skin.  I want to lie in an open field with the sun in my face and the breeze on the back.  I long to be lulled by bees and made drowsy by distant traffic.  I am at a loss to explain this urge to flee.

My daughter's boyfriend, who I love dearly, recently articulated it perfectly for me.

"Your house is fucking mental" he told me.

Tbh, I had kinda forgotten.

In the same way that a fish doesn't know it's wet, I have become oblivious to the pervasive volume contained within our walls.  It is the constant heartbeat we are deaf to; the white noise we don't hear with our ears, but feel in our blood.

Clamour is ubiquitous.  We have no mute button.

Three TVs, in three different rooms, transmit a cycle of cartoon series.  A desktop pc spouts many open tabs of multi-lingual YouTube clips.   A portable DVD player syncs with the TV.  Finian vocalises his own autistic language; laughing, squealing, grunting, scripting, singing, humming, shouting, crying, snorting, talking.  But rarely silent.  He never stops moving, heavy feet bouncing between devices to adjust buttons and dials.  His mobile phone connects us to a river of nursery rhymes.  When he can, he comandeers his brother's XBox and streams his shows through that too.  I hear little of it.

Overwhelming sound is the silent river I swim in.  What I am ear-blind to, erodes my rest and invades my dreams.

I get that noise may, paradoxically, help defend him from sensory overload.  It may form a shield against the onslaught of sensory input he can't filter out.  None of this is his fault.

But it's exhausting.

A spell of silence, stillness, reverie would be divine.

Autism & Grizzly Bears

I've written about Autism and fear before, but it's a weighty topic.  It's too big an animal to reconcile with in one post (or maybe even one lifetime).  

I visualise fear as a grizzly bear napping on my kitchen floor.  I try to tiptoe around him.  I fear disturbing him, so I mop around him.  I know there's a large, bear-shaped patch of muddy floor beneath him.  But as long as I can't see the gritty shadow, and he remains sleeping, it's not a problem, right?

I've dealt with many guises of fear in therapy.  It has shown up in the shape of people, loss, trauma, powerlessness, illness, abandonment, perfectionism and all the slings and arrows of life.  I've survived them all.

But there's still a big fucking bear on my kitchen floor.

Most of my defense mechanisms have been therapied out of me.  I can't (and won't) think, drink or distract my way past this. 

We're in the middle of planning adult services for Finian.  I use the word 'planning' advisedly, as we have no idea what we are planning for.  Illusion, smoke and mirrors mostly, it seems.  Endless meetings, assessments and soul-destroying forms circle back on themselves with no clear destination.  

In 3 months Finian will turn 18 and leave the familiarity of school and respite.  The path he's blossomed on abruptly terminates at a cliff edge we can't see over.

I'm terrified.

The well-being of my vulnerable son is in the hands of people I don't know, turning cogs I don't understand.  He could be lucky and be placed in a day service where he will thrive.  Or he could be dropped like a stone with a wry shrug.  His fate will be decided by funding, politics or a rubber stamp.  My husband and I are advocting for him at every turn, but one day we'll be gone.  He'll be at the mercy of faceless people in offices who are more concerned with budgets than humanity.

I'm sick of being scared.

At the risk of snapping an already stretchy metaphor, imma poke the bear awake and either dance or be devoured.  I've wasted a lot of time and energy avoiding the fear.  I need to sit with it, feel it, meditate with it and process it.  I need to integrate the fear as part of my tapestry instead of having a wild animal controlling my home.

The only thing to fear, is fear itself is a cliche because it's true.  I've learned that embracing difficult emotions fully always leads to growth...... it's just that without awareness, my default poition is avoidance. 

I'm curious now about what this will unfold.

Fancy a chat?

Autism & Pyjamas

I love pyjamas.

My favourite part of the day is when I get to peel off the layers of the day and relax into a body unencumbered by straps, belts or elastic. (I may be mostly talking about bras here, but whatevs).  It's frowned upon to traumatise the family by lounging around in the nip, so I spare their horror by covering up in flannel.  

Pyjamas are great.  I can breathe, the family don't want to gouge their eyes out, and I get to commune on a spiritual level with my inner sloth.

I love that damn sloth.

If we all wore pyjamas going about our daily business, it might go a long way to neutralise the differences among us.  It could create a more level playing field, in a brushed cotton, horizontal kinda way.

But then (in a definitely more cellulite-y Sex & the City manifestation), I couldn't help but wonder..... would it really be so utopian if we were all the same?  

I wouldn't like all our differences to be mixed into a homogenous grey sludge of boringness.  Diversity imposes an edge of sparkiness that challenges convention and rigid security. Diversity births creativity.  Darwin, in the tradition of beardy clever people, told us this.  

Fear of difference can be explained as the original stranger danger, where rival tribes fed each other through mincers in case they robbed each other's crab apples and gave the gals the glad eye.  Or something.  Anyway, it was never a clever move.  A narrow gene pool is not healthy.  Check out royal families.

Difference in race, language, skin colour, age, gender, sexuality, IQ, religion, ability, species (I threw this one in to check you were paying attention) ..... whatever you're having yourself..... is what paints this world with beauty and interest.  Acceptance is not enough.  Embracing 'difference' is a joy.  Embracing difference is a key to transcending the dullness of this world.  

It's kinda a pain that I may need to change outta my pjs to get there, but some things are just worth it. 

would totes wear PJs if I could be arsed

Autism & Uncertainty

It's been a strange day.

I woke up unsettled and disorientated.  My dreams made me wonder if last night's herbal tea was sourced from a meth lab instead of Holland & Barret.  My head trips felt like they belonged to a 60s love-child forced to eat their way out of a field of magic mushrooms.  I was spaced out and cranky before my feet hit the floor.

My reflection in the bathroom mirror did nothing to ground me.  It felt like a family of disagreeable badgers moved into my hair overnight.  My expression suggested I may have been chewing thistles.  It wasn't good.

Then my bra tried to murder me by attempting to stab me in the heart with a rogue underwire. 

It was all very disconcerting.  

Things felt uncertain, like normality couldn't be trusted.  

By the time I drank enough tea to regroup into something semi-functional, I wondered if this is what life feels like for Finian.  

Does it feel like an unpredictable, sometimes unwelcome, world happens to him?   

He's facing into huge life changes, most of which he has no input into or control over.  The direction of his adult life will be dictated by people he doesn't know.  He has little comprehension that any of this is even happening.  The unfairness of it is crap.

It's hard to find any certainty in this life.  Being autistic has to intensify that experience.

There's truth in the paradox that uncertainty is the only certainty.  This is something neurotypical people try to integrate into their world view.  But it gets tiresome when lack of clear direction muddies the water even further for autistic people.

I don't know much, but I know I'm done with herbal tea and homicidal underwear.  

I suppose it's nice to be certain of something.  

"one star on Trip Advisor"

Autism & Villages

I spent much of today procrastinating.

Instead of tidying up a few irritating loose ends in my college portfolio, I draped myself across the couch like I was in the terminal stages of a Victorian wasting disease.

My portfolio will be assessed in three days.  The bits that need attention will take about an hour to tidy up.  It's not even proper work.

But I acted like deadlines weren't even a thing.  It was of grave importance that my eyebrows were tweezed into perfect symmetry.  It was most urgent that the dog was groomed.  And all the tea wasn't going to drink itself.

My portfolio gathered dust while I alphabetised the spice cupboard.

I'd like to make my procrastination sexier by saying it was a coping mechanism, used to protect me from my fear of not being good enough..... like a type of performance anxiety.  But the real, and tragically less sexy, truth is that I was just being a massive lazyarse (real word).

And I loved every minute of it.

I idled the day away deeply appreciating having a lovely husband who will take Finian to youth club while I crack on with (*cough*) work.  I am weak with gratitude that I have emerged from the happy side of many months of intense therapy, now able to eat, sleep and not view the world as a hostile place.  

Having a kiddo with autism is hard.  That's hardly headline news.  Crawling through decades of psychological awfulness (without much grace, it has to be said) was also super not-good while managing autism.

But when things are hard, I've learned to look for the good people.  The ones who hug you when you're a stinky mess.  The ones who meet you for a walk or a coffee when you're Not Your Best.  The ones who let you know they're there for you, even when you've driven them insane with your lunacy.  There are good people who supported me without knowing it..... my yoga teacher, my college buddies, strangers who smiled at me in shops.

Before this becomes an Oscar acceptance speech, I think it's important to point something out.

Among our autism circles, we often remark that it takes a village to raise an ASD kiddo (albeit a weirdly niche one, characterised by much talk about streaking kids, and children taking enormous dumps in the display toilets in B&Q).  

But as I continue to flounder my way through this perplexing world, it's clear to me that it takes a village to raise every one of us.  It takes a little humility to accept this, but all of us need each other. 

Portfolio done, with fabulous eyebrows

Autism & Pica

Pica sounds like it should be something exotic.

A strange Amazonian fruit.  Maybe a Vivienne Westwood corsage.  Perhaps some prehistoric creature clinging to volcanic vents in the deepest caverns of the ocean.

But it's none of those things.  Sad face.  

Pica is eating shit you shouldn't.

Babies go through a stage of development where they explore the world orally, and just about everything goes in their mouth.  For a while they're like cute, but not very efficient, hoovers.  Then they discover that most stuff  on the ground doesn't taste great, so they stop.

Unless that baby is Finian.

It's hard to tell if its arrested development, or part of a sensory processing disorder, but pica has been his dependable companion ever since he discovered his hands could reach his face.

Finian seems to be committed to a life-long game of cat-and-mouse with Death.  He eyeballs the Grim Reaper, without blinking, while popping some broken glass in his mouth.  I imagine him saying "so whats your bony ass gonna do about it???"  

Death doesn't stand a chance.

The list of things Finian has eaten (entirely or partially) is impressive.

Coal.  Thumb tacks.  Paper clips.  Staplers.  Paper (important documents are especially delicious).  Firelighters.  Nail clippers.  Buttons.  Many, many books.  Wet toilet roll (yum..... and yes, from the toilet, for extra flavour).  Towels.  Styrofoam, which makes for defiantly floaty turds..... a few of them hung around so long I considered adopting them and giving them names.  Peter the Turd.  A chair.  Glass (see above).  Rocks.  Masonry.  Sand.  Jewellery..... we may have the most expensively accessorized septic tank in County Monaghan.  Packaging.  An electrician once remarked that judging by the chewed cables, we may have a rodent problem.   Yeah we fucking do.  Combs.  The insoles of shoes.  Pens.  Blue tack.  Googly eyes.  Crochet hooks.  DVD cases.  Baskets.  Logs.  Whatever you're having yourself.

Finian has the constitution of a hard-boiled ox.  He'd survive a nuclear holocaust with barely a sneeze.

The irony is that he'll eat just about anything except food,

His diet is limited to about five or six items (excluding crisps and confectionery, which he would live on if allowed).  We rely on protein bars and multivitamins to keep him nourished.  He is a human paradox.

So, it would be lovely if Pica was a sublime piece of music or an unusual rose.  But it's not.  Which is just as well, because he'd probably eat those too.

Autism & Revenge

It appears I created a monster.

A short while ago I wrote about teaching Finian to help with housework.  He's enthusiastically making his bed, learning to use the washing machine, and emptying the dishwasher.  I should be delighted.  

But it's come at a steep price.

I'm undecided if it's his autism, or if he's turned revenge into an art form, but Finian has assumed responsibility for tumble drying clothes with relentless zeal.

He puts everything into the tumble drier.

Everything.

Clean clothes.  Dirty clothes.  Wet clothes.  Dry clothes.  Clothes he just stripped from himself in the kitchen.  (Naked tumble drying is now a thing.  You're welcome).  Clothes that should be air dried and emerge just about big enough to fit the cat.  Shoes.  The entire contents of the washing machine in one load.  The hair-infested dog blanket.  My favourite fucking cardigan.

I've developed a Pavlovian startle response to the sound of the tumble drier.  It invades my dreams.  I've created a niche anxiety disorder about what I'm going to find in the drum next.

Be careful what you wish for, as the surprisingly wise Pussycat Dolls warned us.

It occurred to me that the mafia famously said that revenge is a dish best served cold.  They didn't count on a tumble drier.

where my dreams go to die

Autism & Growing an Adult

I have Finian's head wrecked.

The whole object of parenting is to produce functional adults who will eventually leave us.  That part sucks, but it's how the gig works.

I know Finian will never live independently, but I want him to live as independently as possible.  So I give him jobs to do that challenge him a little, like unloading the dishwasher and changing his sheets.  Hopefully this will deepen his self-trust so that he can tackle more complex things in the future.  I try to help him develop confidence in his own abilities, safe in the knowledge that he can come to me for help if he struggles.  My hope for him is that he will have the courage to move further and further from my safety net.  That he will develop a sense of safety within himself and within the world.  This is where creativity and personal growth flourishes.

Like any self-respecting teenager, he resists like crazy.  He becomes deeply engrossed in his toenails, or urgently needs to watch an episode of The Power Puff Girls, or becomes strangely deaf.  Sadly for him, he's my third kid so there's no get-out-of-jail-free card.  I've heard all the excuses, and none of them fly.

Then, I had one of those light-bulb moments when I realised that I'm going through the same process.  As epiphanies go, mine wasn't as poetic as Saint Paul falling off a horse and being blinded by the divine light of God.  I think I was scrubbing skid-marks off the downstairs toilet wearing a pair of marigolds at the time.  While sweating like a mare through a menopausal hot flush (I suspect God doesn't like women very much.... he definitely seems to favour saints on horses). 

Anyway, I'm also learning to be my own safe space in therapy..... which is pretty much what I'm trying to teach Finian.  I had a happy little nerdgasm when I realised there's a parallel process going on.  It doesn't take much to please me.

Helping Finian to become a functional adult won't be let slide just because he's autistic.  I expect him to become all he is capable of becoming...... including creating inventive excuses to dodge housework.

somebody call Child Line

Autism & Amazing Parents

It's widely accepted that autism parents are saintly, wholesome creatures who could teach the Walton's a thing or two about being virtuous.  We have been gifted by the Gods with an eternal wellspring of patience, shouldering our load with inner tranquility.   We dispense kindly pearls of wisdom to those in trouble, having cultivated our Zen through the serene endurance of hardships.  

It is whispered that Buddha and Jesus are kinda jealous of the level of enlightenment we radiate.

Autism parents are the true Latter Day Saints.

"go in pieces"

No.  We're.  Fucking.  Not.

I'm having a shit day with Finian and I've just given him his third bag of crisps to try to stop him crying.  Learning to regulate his own emotions is a work in progress.  He's OK at indicating that a shower or a walk would calm him down, but he's unable to identify the reason for his irritability.  Equally, I'm OK at using Mindfulness and Other Tricks to help me attempt to co-regulate his emotions, but this relies on me getting enough sleep and eating properly.  This doesn't always happen.

Some days it all goes to shit and all I can do is throw crisps at him and hope it'll pass soon.

Today is one of those days that grabbing a shower is a hazy dream, and cooking a proper meal is the stuff of fantasy.  Balancing a Gin and Tonic on the ironing board while I tackle the laundry seems much more conducive to coping, as does a phone call to our friendly (and very familiar) take-away.  

You do what you gotta do to manage.

It's important that we forgive ourselves for being less than perfect, and for breaking the rules to survive a hard day.

Today I look like a small family of weasels live in my hair, and I seem to be wearing my husband's clothes (and not in a fun, Friday night sorta way).  Finian's breath stinks of salt & vinegar, and I may be half-baked by bedtime.

But I'm OK with not being an Amazing Parent.

Being OK will do grand.

The Waltons.
Off their tits on Mogadon.

Autism & Why I'm an Asshole

Epiphanies aren't all they're cracked up to be.

Having a blinding moment of insight usually means that, up until this point, you've been kinda an asshole (and by 'you', I mean 'me').  It's never my favourite moment to realise this.

I was bopping around the house with Finian and he wanted to go for a drive, but something happened that prevented us from going.  Instead of losing his shit, he amped up his inner Zen and shrugged it off.  He met this with an inner calm that surprised me, and I was struck by his acceptance that our change of plan was beyond his control.

We waste an insane amount of time and energy trying to change the unchangeable.  It occurred to me that we have no control over our outer reality.  This seems obvious, but we often act as if we can bend our environment.  But we can't change the weather, or make the driver in front of us speed up, or make our crush fall in love with us.  We can't force other people to see us the way we want them to.  We can't control random occurrences that scupper a road trip with our kids.  These perceived obstacles enrage us and we become consumed with the need to overcome them.  They devour our energy.

Imagine the creativity we could unlock if we channeled all that energy into developing our own inner strengths? 

It all starts with our self-concept, and the lies we tell ourselves to maintain it.

Our self-concept is who we imagine we are.  We construct it from what other people tell us we should be like, as well as who we imagine we want to be.  We build it as a shield to protect our vulnerable Real Self from the judgement of ourselves and others.  So basically, we become who other people want us to be, so that we will be safe and loved.  Eventually, we may come to believe that our self-concept is real.  Our Real Self  may become silenced and we don't achieve the potential we're capable of, depending on the level of judgment we are exposed to. It's kinda a bum deal.  

It's really only through having the courage and insight to dismantle our false ideas about ourselves that we can embrace our inner truth.  The energy we waste trying to maintain our self-concept could be vastly better used to become the best version of ourselves.

We drive ourselves crazy trying to change an unchangeable world to support our self-concept.  We scream at the slow driver.  We blame the weather for being in a bad mood.  We feel victimized by aging. Imagine accepting reality for what it is, free from the terrible anxiety of trying to twist it to fit a false agenda?

Acceptance doesn't mean passively enduring things that are bad for our soul.  It's not the same as giving up.  Finian knows this, and he kindly schooled me by being chill about change.

Autism & Ability

I like to think of myself as being adventurous rather than unwise. 

It could even be true.

In my 50 years on this earth, I never quite got the hang of running.  I seemed to lack the ability to coordinate breathing, moving and remaining alive at the same time.  On the strength of this, I decided that I had to train to run 5 km.  It seems my defiant streak shouts louder than rationality.

So I gave a two fingered salute to Wisdom and started to run.  Wisdom, however, promptly gave me a two fingered salute back by trashing a muscle I never even heard of (the soleus, apparently.... which up til now I thought was a type of ice cream).     

So, I'm hobbled.

My stellar running career has been put on hold,  and my ego is sitting on the Bold Step thinking about what it's done.

Limping around is one thing.  Apart from being endlessly entertaining to my family (who find it hilarious because they're a bunch of bastards), being slowed down is driving me crazy.

Using the stairs takes forever.  Housework has slowed to snail's pace.  Every movement requires planning, intention and lots of extra time.  The space-time continuum has ruptured along with my disagreeable calf muscle.  

In a minor way, it feels like being temporarily disabled.

The world is not as easy to navigate.  I'm frustrated because I can't do all the things I want to do.  I'm exhausted by the extra effort it takes to manage simple things I previously took for granted.  And this is just a damaged muscle which will repair in a few weeks.

I wonder how many times I'd have to multiply the feelings of frustration, impotence and rage to imagine what being autistic feels like?  It's little wonder that autistic people are often overwhelmed, strung-out and explosive when they live in a world that doesn't match their needs.

I often say that I'd love to live inside Finian's world for a day, to truly understand how to help him live comfortably in this world.  Now I'm not so sure I could manage even that.  My respect for people living with life-long disabilities has dialed up past the max. 

not a muscle