Autism & The Cute Quotient

I'm not entirely sure when Autism stopped being cute.

Back in the day, Finian was met with indulgent smiles when he flung himself into the arms of strangers.  He was chubby and cuddly and loudly generous with hugs.  His disregard for boundaries disarmed the most defended of people.  He took Cute, blended it with feral vitality, and unleashed his own irresistible brand of Lovable onto the world. There was no-one he couldn't charm.

Then, in the space of a few disorientating months, he sprouted body hair and grew 3 feet taller.  

The once compact, rosy-cheeked, ankle-biter scaled up into a man-sized Jitterbug, composed mostly of knees and elbows.  

He began to scare people.

Ngl, it was kinda a shock.  

I'm a card-carrying Irish mammy.  I am blessed with the unshakeable knowledge that I have given birth to the Most Beautiful Children Who Have Ever Existed....... but even I can see that Finian is at risk of becoming known for all the wrong reasons.  My son's deceptively adult body is governed by a banana republic with a drunk toddler managing the war cabinet ..... but all this limited world can perceive is an alarming eccentric with little regard for social convention.

It's my job to keep him as safe as I can in a world not designed for the neurodivergent.

There's nothing about this in the DSM.  There's no graduation ceremony, graph or flow chart to give us a heads-up.  We don't receive slices of cake, or HSE memos, or milestone reminders, indicating that the Delightful Quotient has degraded from Enchanting AF into Social Menace territory.

Special needs parents have to figure things out for themselves.  We have to be clear-eyed about what can make our kids lives difficult, and be creative with how we circumvent future hardship.

Finian is an unpredictable pre-schooler inhabiting the body of a nineteen year old man.  My task is to be his tree in the storm;  I need to have strong roots anchored deep in safe earth, with flexible branches that bend with the wind.  Because I enjoy a stretchy metaphor so much, I also need to be the leaves that evolve with seasons and create beauty out of air and earth.  No small task.

Flexibility, the willingness to embrace change, is central to the wellbeing of our special needs kids.  When we bend, we won't break.

Autism & Takiwatanga

Native Maoris don't recognise autism as a disability.  This 'primitive' culture were rocking neurodivergence long before white people arrived with a welcome gift of smallpox and genocide.  

Indigenous embrace of those with special needs is so pure that they don't have a word in their vocabulary for disability.  

The closest phrase they have of a definition of autism is "takiwatanga", meaning "his or her own time and space".  

What a beautiful phrase to taste and roll around your mouth.  

His or her own time and space.

Imagine if we enjoyed this flavour of autism, instead of wishing to change it, break it or spit it out?

In this insane corner of the 'civilised' world we value speed, productivity, material wealth, aggressive acquisition and perpetually anaesthetising 'entertainment'.  

We are rewarded for running on empty, using a burnt-out engine imposed on us by a toxic culture.

The notion of sitting quietly with ourselves is so alien that it fills us with terror.  Most of us have never met our true selves.

In my work as a counsellor, one of the first exercises I invite my clients to try is to practice five minutes a day of sitting in stillness.  Most struggle hugely with it.

In the west, we sleepwalk through our lives at lightening speed.

It's no wonder we frame autism as a set of infuriating deficits.

So, I caught myself feeling impatient with Finian yesterday.  

He is a handsome, able-bodied young man but I have to help him have a shower.  I found myself rolling my eyes as I had to rinse his hair and help him shave.

I'm a product of my western values, so I'm not being too hard on myself about this, but my life with Finian is teaching me to experience the world with a wider lens.

I took a deep breath and stayed with the discomfort of slowing down.  I remembered to be, instead of do.

In first nations cultures, our autistic loved ones embody mindfully living in their own time and space.  Seems to me that primitive cultures and disabled people are lightyears ahead of the rest of us in knowing their own souls.

Autism & Cuddles

I'm a shameless hugger.

No-one is safe.

In public, I practice an exercise where I mentally pin my arms to my sides and count to ten until the urge passes.  

Then I hug them anyway.

I've had to had a stern word with myself to refrain from hugging the postman or the bank clerk (mainly to avoid injury or incarceration).

Usually this works.

The thing is, I miss cuddles with my adult children.

Yeah, we hug, and chill together on the sofa etc. etc. But we don't do the big, full-on, soul-deep cuddles we did when they were little.  When puberty arrives, cuddles like that become a bit creepy and Game of Thrones-y.

Finian, however, doesn't waste any mental energy on social norms or raised eyebrows.

Finian folds that flying fuck into an origami humming bird and catapults it far, far away.

This is one of the sunny sides of autism.

On weekend mornings he waits for his dad to get out of our bed (Freud, eat your heart out), dives in, and cuddles up beside me from his head to his toes.  With a big old silly megawatt smile radiating from his lovely face.  The man just wants a goddamn cuddle and isn't shy about getting it.  There's a purity about his demand for love that is both vulnerable and courageous.  His autism bypasses all the conditioned bullshit that prevents most of us from experiencing this.

Things can be right in the world with love like this

.

Autism & Getting Weird

Change is always weird.

This particular transition knocks weird outta the park, though, as polarised stop/go events have me scratching my menopausal beard in bewilderment.

There's a lot happening, and nothing happening at all.  

We're getting ready to start the slow integration of Finian into adult services.  The whole process has taken the better part of a year.  There have been long periods of silence, punctuated by mad flurries of activity.  Next week he's going to attend for an hour for 2 days, with the intention of eventually working up to a full week.  I'm encouraged by their client-centredness, but I have to own that I'm worn out by the protracted nature of proceedings.  It feels like I've been holding my breath for a long time.

Finian has been expressing his anxiety in his own unique way.  

He's been picking the paint off woodwork in the dead of night, waking us up to inform us that he's turned into a giant, nocturnal mouse.  "The paint is scratched" has become a mantra I will never use in meditation.  

The distressed look (both woody and parental) is now big in our house.

He's pica-ing like a boss.  I found him having a good old chew on the dog's toy bone a few times.  Finno has an immune system made mostly of pig iron, so he'll probably give some exotic disease to Milo rather than the other way round.  I'm now watching the pooch for signs of Dengue Fever or Chagas Disease.  Meanwhile, Finian is healthy as an ox, with beautifully shiny, white teeth.

He's been blindsiding me with blitzkrieg meltdowns, in that he's binned the usual escalations I can work with.  Normally I like surprises, but I've discovered I prefer the ones that are wrapped and expensive.  To this end, for my birthday, I would definitely prefer a sparkly piece of jewellery than a conniption.  

Just sayin'

I've caught him peeing into the drains outside.  I don't know if this is anxiety related, or if he's just being a lazy-arse.  It's been a dry month, so maybe it'll do the roses good anyway.  Not too bothered about this one.

In addition, my daughter has moved into college accommodation.  I miss her like mad but am also delighted for her.  There's a feeling of not quite knowing what to do with myself, while being savagely proud of the focussed young woman she has become.

So these changes seem to be laced with some kinda ambivalent identity disorder.  They're behaving like feral children who had too many blue m&ms and aspartame-flavoured bubbles at a party. Meanwhile, there's only so much beard scratching I can do before my face falls off. 

my actual face

Autism & Guilt

Finian's anxiety is peaking.

He demands more hugs.  Less sleep.  More attention.  More meltdowns.  More body tapping.  More stimming.  More pacing.  More reciting obsessive lists.  More hours spent sitting with him as he howls instead of washing my hair, or brushing my teeth.  More anxiety-laced, repetitive questions.  More echolalia.

I'm fairly certain it's linked to his upcoming transition into adult services.  He says he's happy about it, but we know that autism and change don't make a happy marriage.

We've had a great summer.  He's been living his best life.  Sleeping in.  No demands.  Day trips.  Walks.  Uninterrupted access to me for reassurance and cuddles.  All the good stuff.

I'm the constant touchstone he can rely on to be reassuringly present, no matter what else is going on in his world.  With neurotypical kids, this reliance is gradually replaced with growing autonomy and self-reliance.  This isn't how it goes with our autistic kids.

It has become an impossibly complicated dance to try to foster his independence while helping him to feel secure in a world not designed for him.  

Guilt is unavoidable, so I own it instead of denying it.  

I'm ingraining his dependence on me by being his safe place.  This is not ideal, but he is more vulnerable than most.  I'm also provoking his anxiety by pushing him away from me into adult services and respite;  he is a young man and I won't be around forever.

Guilt is guaranteed either way, but I accept this and oddly don't feel bad about it.  It seems to be part of the special needs deal.

Before Finian, I had a negative, polarised view of guilt.  I believed it was a nasty hangover from a catholic childhood that needed to be peeled off  like an ugly scab.

Now I see guilt as something more nuanced; something softer than good-or-bad, that I can carry fairly easily.  It is an unavoidable consequence of special-needs parenting.  It seems wiser to make friends with it than to cram it into my unconscious (where it could manifest as unhelpful illnesses, addictions or general lunacies). 

I am eternally grateful to Finian for teaching me the complex layers of emotions we tend to shy away from.  

That said, I'll be glad to discard my unwashed, homeless look, and get back to seeing my clients next month.  The bin-girl vibe is not my jam.

Autism & Howling

 It's 5.30 on a Friday evening and I'm cuddled up in bed with my howling boy.

At least, I think he's howling.

He's scripting Bob the Builder in Albanian and maybe they speak in howls.  Who knows?  I don't know any Albanians to check this out with.

It's been an emotional week.

(stretchy metaphor incoming.  Brace yourselves)

He (and by extension, we) have raked together all the happily drifting leaves of emotion into a single (worryingly large) bonfire.  We doused them with miracle-gro for shits and giggles.  We mixed them together with altogether unnecessary violence, using agricultural machinery we borrowed from a farmer who may be Hannibal Lecter.  

Because I like overcooked analogies so much, Finian set the overfed confusion of leaves aflame this evening.

It would have been a thing of beauty, if it wasn't quite so loud.  And howly.

Let me explain.  

Today, Finian left the school that was his safe, loving, ambitious haven for the last decade.  It feels like we just deposited our parachute, lifejacket and flare in the bin and took a foolishly optimistic leap over a cliff.  

It's an awfully long way down, and I don't like heights.

In the last week he had a moving graduation ceremony, an 18th birthday party ( 2 of them, actually) and goodbye parties at school.  There have been birthday cards, rituals and bouncy castles.  It's all very healthy, moving-on stuff, but there's no doubt that a good howl was required to process all of this.

It's kinda unfair that as an adult I'm not really allowed a lusty scream into the void, so I have to settle for a headache instead.  A headache isn't nearly as sexy as an exuberant purging of the soul, but it's all I have to work with.

I'm trying to embrace the fall through the void in a grown-up, philosophical sorta way.  Which is a shame as I'm not very grown-up or philosophical.

I'm just glad God created the comfort blankets of chocolate, rioja and Schitt's Creek.

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 & Autonomy

Finian was supposed to go to Youth Club this morning.  He hasn't been for a few weeks and was really looking forward to it.

But this morning he was glued to his bed.

The shoulder of a reinforced crowbar wasn't enough to disengage him from his duvet.

The lure of a spin to Drogheda wasn't sweet enough to entice him from the arms of slumber.

Even the promise of hot chocolate failed to cut through the layers of indolence.

He gave the conscious world a Hard No.

For a few minutes I cajoled, threatened and bargained.  Nothing.  I tossed my self-respect in the bin, and begged.  Silence.  I considered bringing out the big guns and crying.

Then I caught sight of myself from the third person.  I saw the absurdity of trying to force a tired young man to attend a club when he'd clearly rather rather sleep.  It's his choice to spend his down time as he choses.

Stepping back from making choices for our special needs kids is a tricky two-step.  We spend so much time advocating for them that making decisions on their behalf becomes second nature.  It's easy to mindlessly impose our choices on them, no matter how unwelcome.

Special needs kids already have little enough autonomy, without us devouring the scraps that remain.  Even when well intentioned, it's not cool.

So I let him sleep.

Autism & Adult Services

We are deep in the trenches of planning Finian's transition from school to adult services.

We had another meeting today to try to shuffle things forward an inch or two.

It's tiresome, and built with a matrix of uncertainties and wait-and-see's.  So far, though, no-one has given us the bum's rush out the door.  I'll take my positives where I find them.

All the professionals we meet are lovely.  I have no doubt that they are all fighting in Finian's corner.  It's not the people within the system who turn the road into treacle.  It's the system itself.

Our already complicated lives are further perplexed by having to repeat the same information to multiple teams, multiple times.  I lost track of which team serves what purpose ages ago.  When you're preoccupied with raising a special needs kid, extra layers of red tape tend to get lost in the haze.

The process is arduous and anxiety-laced.  This is bearing in mind that, as supports go, parents are not all placed on a level playing field.

It is with something close to guilt that I'm aware I have the support of a great husband, close friends and dear family.  We can comfortably manage to pay the mortgage and put food on the table.  We have the benefit of education to help us navigate the criss-crossed waterways of disability services.  Finian is as healthy as a grass-fed ox, with no extra conditions tangled up with his autism.  Our older 'kids' are thriving, (almost) independent adults.  

And we find it draining.

I find myself thinking about the parents who start out on the back foot.  The single parents.  The ones who worry about paying the rent.  The ones who sweat at the supermarket checkout in case their card is declined.  The ones who struggle to comprehend the layers of bureaucracy-speak.  The ones managing two (or more) special needs kids.  The ones struggling with their own health issues.  The ones who carry the weight of tube-feeding their children or injecting them with insulin.  The ones who cry themselves to sleep with lonliness.  The ones sporting bald patches where their kid ripped plugs of hair from their scalp.  

I'm not diminishing my own experience, but the balance of good fortune is tipped in favour of some.

While I'm deeply grateful for the supports I have, it's kinda crap knowing that not every special-needs parent has these.  

Unfairness is part of life.  But that doesn't make inequity any easier to bear.

Autism & Murdering Trees

Yesterday I woke up with the intention of  working on an assignment, but I ended up murdering trees instead.

Tree genocide (in the form of wasting paper pointlessly) is not something I'll proudly add to the Achievements section of my CV (it's surprising that so many agencies still use paper in this digital age).  Tbf, if I'd dealt with the growing mass of forms a bit sooner, it wouldn't have become such a big chore......  but it's nice to have something to complain about.

I was kinda hoping that if I ignored the forms long enough, they'd disappear, or maybe even complete themselves.  But they sullenly remained un-disappeared and un-completed.  Anyway, it reached a tipping point where I was either gonna have to change my identity and flee the country, or put on my Big Girl pants and dive in.

So I dove in.

I completed a form reviewing my Carer's Allowance (€39 per week to spend wantonly as I please).  The paperwork required for this alone is eye-watering.  They wanted hard copies of three months of bank statements (approximately 8000 pages) and my husband's payslips. I can still hear the trees screaming.  More worrying though, is the prospect that they'll further cut my allowance.  How will I maintain my lavish lifetsyle?  I may have to find a sugar daddy to keep me in Bollinger and Lacroix (sorry Husband Dear, but I'm being penalised for you working hard.  What's a girl to do?).

I booked my NCT.  Next appointment available is August.  Wtf.

I filled out a tax form for the dentist.  The same form I fill out EVERY visit.  Sigh.

I started a form applying for adult services for Finian.  It cunningly tricked me into a false sense of security with its apparent simplicity..... until I realised that I need to catalogue 17 years worth of schools, services and hospital admissions.  I literally can't remember what I did 2 hours ago.  The ink may now be unreadable due to my bitter tears.  Hate that.

I booked a smear test and ordered prescriptions.  Disappointingly easy.

Then I tackled Finian's prescription sheets for respite, which now need to be taken to my GP, collected in a few days and then returned to the respite centre.  Reassuringly complicated.

All powered by a triple espresso and a family-sized bar of wholenut.

As a great philosopher once said, what a load of bollox.

More strangers know my PPSN than friends know my phone number.  

I could have spent a happy morning eating doughnuts, judging dysfunctional families on Say Yes to the Dress, or buying impractical online fuckery.  Or doing responsible parenting stuff, obvs.

Wasting time, energy and resources, repeating the same information to the same people, makes the Trials of Hercules look elementary.  He'd tap out in five minutes of being a special needs parent.

the trees are screaming

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 & Attachment

Attachment is a pretty cool concept in psychology.  

It's more than having a deep affinity for orange chocolate, rioja and Matthew Mc Conaughey's abs (or so my college tutors insist).  Attachment is the mutual feeling of security and love that develops between an infant and it's caregiver.  But as well as being warm and cuddly,  it's a deadly serious survival strategy.  Attachment ensures you'll continue to care for the outraged poop-machine that popped out of your (now traumatized) vajayjay.  Evolution hardwired us to fall in love with the fruit of our loins so we don't return the screaming balls of fury to the baby shop, strap on our sparkly high heels, and hit up the nearest nightclub.  Survival of the species etc. etc.

Healthy attachment happens when the caregiver responds to the baby in a loving, consistent way and they learn to co-regulate each others emotions.   The baby develops emotional resilience and is securely attached.  The child grows into an adult who can enjoy healthy, loving relationships.

Disordered attachment happens when care is inconsistent (resulting in insecure anxious attachment), or mostly absent or dismissive (causing insecure avoidant attachment).  Disorganized attachment arises when the caregiver oscillates between the two and the baby becomes.... well.... disorganized.    

The insecure, avoidant adult tends to be emotionally unavailable within relationships and may feel suffocated by love.  They dislike relying on others, and they mistrust intimacy.

The insecure, anxious adult tends to live in fear of abandonment and lack the resilience to cope with being left.  They're often needy, and seek validation from others.  I fall into this group, which is great fun for my (eternally patient) husband.  He totally ruined my anxiety with his damned love and consistency, though.  That, and lots (and lots and lots) of therapy have finally allowed me to retire my preoccupation with abandonment.  Hurray for nice husbands and therapy!

The insecure, disorganized adult tends to crave love while pushing it away, which isn't fun for anyone.

(there's a good article describing attachment here, including a quick test if you want to check what type you are)

That's all well and good when you're neurotypical.

But what about when you're autistic?  How do autistic people form attachments, and what can we do to help them thrive?

Not surprisingly, research shows that autism is associated with avoidant attachment styles.  More reading shows that when parents develop a secure relationship with their kid, that the outlook improves.  It's also hard to tell the difference between what behaviour is autism related, or attachment related.  

Academic papers aren't always helpful in the real world.  Sometimes they just muddy the water.

I think all we can do as parents is love our kids as best we can, and be kind to ourselves when we don't get it right.  I feel a deep love for all my kids, and I know they all love me back.... including Finian.  

Autistic people are clearly capable of forming healthy attachments.  It's our job as parents to do what we can to make this happen.

securely attached

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