Autism & Diagnosis

When Finian was 3, he was diagnosed with Autism as described by the Diagnostic and Statistical Manual of Mental Disorders (DSM).   

The diagnosis wasn't a big surprise; he had been lining up his toys and eating firelighters since he could move.  He was (initially) non-verbal.  Intense sensory issues caused him to disintegrate into hysterical meltdowns.  He rarely slept.  Pica meant that he had to be perpetually supervised to stop him eating dirt, paper and plastic.  When he took to his feet, bolting became a preoccupying hazard. I had been pushing for assessment for 2 years.  By the time we out-ruled a slew of genetic, metabolic and developmental disorders, Autism was the obvious last card on the table.  The diagnosis arrived with sad inevitability rather than appalling shock.

I did what most parents do, and became a diligent student of all things neurodivergent.  There wasn't a book left unread, or a therapy left unconsidered, including a fierce study of the clinical criteria necessary to diagnose Autism.  I devoured the DSM.  It was populated with deficits (in communication and social interactions), functional limitations, and categories of restrictive, repetitive behaviours.  These were measured on score charts by well-intentioned professionals.  In slow-motion horror movie style, I realised that accessing the services my son required depended on him being reduced to a set of deficits.

But, search as I might, I could not find my lovely, spontaneous, unguarded boy in the language of insufficiency used by the DSM.  

I'm pragmatic about Finian's needs; I recognise that he has requirements that are reluctantly met by an ableist world.  I understand that we need to identify the areas that autistic people struggle with to attempt to help them.  Measuring the 'deficiencies' of autistic people is an expedient way to plan services.  It is all too clear, however, that service planning consistently fails our kids, so the price of prudently labelling our kids as 'less-than' and 'other' is a false economy.  

Sometimes I indulge in a dangerous fantasy. Imagine living in a world where the lens was reversed, and we focussed on changing the wrongness of our society rather than the wrongness of our children.  I know it's not going to be realised in my lifetime, or probably Finian's, but I'm cursed with optimism that, in time, the world will learn to value difference.  

Autism & Triggers

Sometimes, in case I'm falling asleep at the Autism wheel, Finian reminds me of his neurodivergence by having a meltdown.  It's a loud memo he sends me now and again to keep my spectrum senses sharp.  Nobody needs as complacent Autism Mammy.

A meltdown is different to a tantrum.  

In a tantrum, the person has one eye on the observer to check the effectiveness of their theatrics.  In a meltdown, the person is so overwhelmed that they..... well...... melt down; they don't need, or even notice, an audience.  Tantrums have purpose; meltdowns are an involuntary response to sensory overload.  A meltdown is not about being belligerent, manipulative or obstructive.  It's about being so fraught with unprocessed experiences and emotions that they erupt with apparently random violence.  They're exhausting, scary and not fun for anybody.

Emotional regulation is tricky at the best of times, but throw Autism into the mix, and maybe some excessive social demands, and it doesn't take long for the perfect storm to be whipped up.

The trouble autism parents have is that we don't always see them coming.  

On a good day, we notice escalating behaviours in our kids.  This gives us a chance to make environmental changes, or introduce calming practices, to minimise the distress.  

On a bad day, a meltdown bitchslaps us with the subtlety of a wet haddock.  

Neurotypicals can usually identify their triggers fairly easily.  We (mostly) have skills to help us manage dysregulated emotions.  It's not always so clear for those on the spectrum. It can take hours, or even days, for an experience to be processed as an emotional response.  This is what happened Finian two days ago.

At the weekend, Finian had a meltdown that'd make the love child of Elton John and Mariah Carey blush.  I didn't see it coming.

On the surface, it seemed to abruptly detonate without warning; one minute he was pottering about scripting Angelina Ballerina..... the next he was screaming into the void, flinging himself around our home with ferocity.  It lasted a couple of hours.  I dealt with it by meeting his heights of fury with depths of calm.  Co-regulation, the willingness to quietly sit in the storm with our kids, is best practice.  It always passes in the end.  

Often, I'm unable to pinpoint the trigger to Finian's meltdowns.  This time, though, I eventually figured it out.

Earlier that day we went out for a walk, followed by the promise of a kiddie ride in a local shopping centre.  I hadn't factored in that the shopping centres were closed because it was Easter Sunday.  The kiddie ride didn't happen.  Finian was disappointed, we had chats and a cuddle, and I forgot about it within ten minutes.  About six hours later, Finian remembered.  His experience of the world being unpredictable, unsafe and abandoning was too much to express in limited words, so they found release in a screaming, self-harming cacophony of raw awfulness.  

If we listen properly to our Autistic loved ones, the triggers to their emotional pain hide in plain sight.  In hindsight, Finian had been chatting about locked cars;  if I had been listening well, I would have spotted the metaphor for powerlessness and being denied access to something.

This isn't about self reproach; it's about being willing to learn.  If our kids are a cryptic crossword, it makes sense to pay attention to the symbols and metaphors they communicate in.  

Triggers are not something to fear, but should be recognised as welcome signs of rough winds approaching.  Paying close attention gives us a little ability to contain the incoming storm.  Whether typical or divergent, challenges to our world expectations are deeply triggering; noticing and working with them makes a lot of sense in this crazy world. 

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 & Nose Bleeds

I decide to have an early night.

I relax into my quiet bed with word games and herbal tea.  I feel terribly grown up.  Perhaps this is what it means to be a normal, functional adult?

I am almost asleep.

Finian thunders across the landing with the grace of an outraged wildebeest.

"It is bleeding" he announces.

His words are made redundant by the red soup smeared across his face and pyjamas.

Nosebleeds are a thing for him, a gift he has inherited from me along with Raynaud's and a love of sparkly things.  I am nothing if not generous in sharing my most interesting genes.

I take him to his bedroom. In the absence of tissues, it seems Finian has used the walls to wipe his nose.  It resembles a 1970s horror movie abattoir, where possessed workers enthusiastically paint the room with pig innards.  I briefly wonder if I could sell it to a gallery.

I sigh.

I feel bullied by genetics and bad movie sets.

He is a little distressed, but he knows the drill; pinch his nose, lean forward, wait for it to stop.

It does not stop.

My fingers hurt from compressing the bridge of his nose.

Long minutes pass.

Finian's bedroom walls and ceiling are crammed with art he has made over the years.  I have plenty of time to look at them.  Pammy Panda and Bob the Builder feature heavily.  I rub his back and hand him fresh tissues.

Inexplicably, one of the pictures falls from the ceiling.

Finian can cope with the bleeding, but disobedient art proves to be a bridge too far.

He loses his shit.

He leapfrogs around the room clutching the offending picture, spray-painting the room red with gay abandon.

"Fix the picture" he screams.

"First we fix your nose, then we fix the picture."

"FIX THE PICTURE!!!!!!!"

I accept we may be the playthings of the gods, but I am not pleased with being blindsided by this level of fuckery.

I invite them to perform illegal sexual acts with their mothers.  I suggest they roast their genitals in the fiery pits of hell.  I direct them to assume unlikely yoga poses involving positioning their heads in surprising body cavities.

The gods don't care.  They roll their dice and laugh.

I decide that this is not the time to reason with my son.  It is clear it would not be helpful to point out that if he bleeds to death, he won't care where the picture of Pammy Panda is located.  I consider suggesting he securely locate Pammy Panda in a place visited only by proctologists and the unholy.

I call my husband instead.

"Can you find some blue tack please?"

There is no blue tack.

James gets ice to try to stem the bleeding.

It does not stem the bleeding.

We take turns pinching his nose and replacing bloody tissues.  Finian is most vocal in prioritising art over imminent death.  We brainstorm how to reattach the picture.

My haemorrhaging son is flanked by two nurses, and we are all more concerned with re-hanging a picture than hypovolaemic shock.

The bleeding finally slows.

James goes in search of something adhesive. His misspent youth being amazed by the A Team does not go wasted.  He returns with band aids.  The picture is replaced, and my dripping son is less screamy.

"The pyjamas are splashed" observes Finian, now that world order, and art, has been restored.

The pyjamas are indeed splashed.

The once-grey sleepwear, now tie-dyed in body fluids, resemble something the Charles Manson clean-up crew may have worn.  I doubt soaking in salt and cold water will save them.  I worry that the bin men might suspect we indulge in a little light genocide at the weekends. 

Eventually, the bleeding stops, pyjamas are changed and evidence of massacre is cleaned up.

I return to bed.  Early nights are inadvisable.

Autism & 'Autistic Privilege"

I have a question.

How do we tell if our kid is being autistic, or just being a massive miscreant freshly ejected from the bowels of hell?

I have always been taught that there's no such thing as "bad" behaviour, and that beneath each behaviour is a need.  However, there is a world of difference between the rarefied air of a sober classroom, and the fluorescent jungle of aisle three in Lidl.

When Finian morphs into a purple incubus because I won't allow him an extra treat, I have to question the wisdom of psychologists.  I wonder how often do they actually take autistic kids shopping?

I still can't tell if Finian's behaviour is signposting a need for safe boundaries, sensory regulation or just a signal that he (very loudly) wants more crisps.

There must be a line between our kids acting out of autistic overload, or out of opportunistic delinquency.

While Finian was at youth club yesterday, my friend Tara and I tried to figure out where this line may be located.    

We didn't get too far with a definition, apart from concluding that sometimes our kids (much as we love them) make rabid honey badgers seem agreeable by comparison.  The 'line' seems to be more of a mercurial, moody suggestion than an actual point of reference.

In Tara's house, the term "autistic privilege"  is used by her neurotypical kids (along with much eye rolling) when their  brother gets off the hook for doing something "autistic".  It's my new favourite phrase.  

Tbf, life is generally not kind to those on the spectrum, so maybe when they get the opportunity to play the autism card, they should do so without consequence.....

..... not that Finian's conscience will ever be troubled by chancing his arm in the supermarket.

"I wanted Tayto, not boundaries"

Autism & Trolls

 The autism veterans among us use a mantra that saves us much time, energy and ophthalmic health.  

Ophthalmic health, because the well-being of our eyes is challenged hard.  

First, we cry lots.  Second, we don't sleep much.  Third, our eyes roll in their sockets like incredulous dynamos at the bullshit we have to see through.  

The mantra is, don't feed the trolls.

Trolls, we quickly learned, do not only lurk under wooden bridges and traumatise goats (for those of you who didn't grow up with Ladybird books, this is a Billy Goats Gruff reference).  Trolls live among us, masquerading as normal people, sometimes appearing curiously human.  However, when exposed to the intoxicating power of a keyboard, it doesn't take long for their inner swamp-monster to emerge.

The weird thing is that it's often those within our own tribe who attack us.  The scourge of special needs parents are often other special needs parents with spleen to vent and inferiority complexes to inflate.

They are also the people who wouldn't say "boo!" to you if they met you in person.  Keyboard warriors are generally cowards in reality.

Earlier this week my friend Emma pointed out (on a supposed support network) that she doesn't feel safe to explain how ABA (applied behavioural analysis) benefits her kids.  This is a therapy many of us use with positive effect to keep our kids, and us, safe and well.  However, some people really don't like ABA; it is singular in it's ability to summon screechy hell-demons.  Trolls become VERY animated at the mere mention of it, and accuse anyone who uses it of being child-abusing satanists.  

Instead of scrolling past it like normal people.  

Adult, reasoned discussions are firebombed by right-on, self-righteous high-horsiness.  Constructive, useful discourse is a bust.

Emma also highlighted the insanity of being anxious about what words we can use to describe our kids (autistic? have autism? mad as a box of coked-up frogs?).  I may have added the frog bit, but there's a lot of eggshell-avoiding in an attempt to not upset someone's delicate sensibilities.  

What the actual fuck?

Anyway, she was flayed alive, roasted, salted and then devoured for speaking about her lived experience.

On a support platform.

The effect is that most of us long-term SN parents avoid social media groups, because we end up giving oxygen to the hot air of trolls.

We can't reason with crazy, but we can roll our eyes at it and refuse to feed it.

Autism & Name-Calling

I finally did it.

I crossed the threshold from being occasionally distracted to living in the twilight realm of pleasant confusion.  

I called Finian "Milo".

Milo is the dog.

It's a fine line I managed to stay the right side of for an admirable stretch.  I suppose I should be grateful that I realised I did it.  And that Finian didn't respond to it.

Silver linings, and all that.

Tbf, Finian and Milo have a lot in common.  They both chew the furniture, howl at invisible phantoms and have, on occasion, used the kitchen floor as a toilet bowl.  Easy mistake, really.

I can't blame overwhelming stress for my lapse, either.

As a family, we're cruising through relatively smooth waters, and relishing every minute of it.

Finian is thriving in his adult day services.  He loves hanging with his  friends at his Saturday youth club.  Our older adult 'kids' are painting their own worlds with evolving palettes.  

On a professional level, I'm in the messy process of setting up my own counselling business.  This is fun, if you consider skewering your eyeballs with toothpicks fun.  I comfortably hold space for clients as they grow through the dark recesses of their souls;  however, swallowing the alien language of sole trading, revenue and marketing is like drinking bleach.  I'd prefer to rote learn Ulysses in ancient Aramaic. My resistance has resistance.  But, still, this is not the source of my mis-dropping of names.

Maybe this pleasant confusion is peace?  

It's nice to lean into it without waiting for the other shoe to drop.  Maybe I'm relaxed enough to allow things be as they are? 

To breathe into this life, without pushing, grasping or resisting, accepting the tornados and sinkholes as part of the rich tapestry, is a nice place to be.  When people talk about the search for their 'authentic self', this is where it lives.

Surrendering the weight of trying to force life to be other than it is, is deeply wholesome (if unfamiliar).  Confusing my son with the dog is a pretty stitch in the comfortably bewildered embroidery.