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 & 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. 

Autism & Sexuality

Yesterday, a pleasant chat with one of my nieces created an unexpected shift in how I see myself, and in how I parent Finian.  It's funny how profound growth can surprise us in the most ordinary of situations.

We were talking about relationships, when a clear, undeniable truth crystalised in my mind.  If I was a young, single gal again I would be open to dating girls.  I'm not sure if that makes me bi, pan or curious.  I'm not sure I'm even that interested in a label.  But learning a new truth about myself is thrilling...... that I am sure about.

Many of my friends and family are LGBTQ+ so I told myself that my attraction to the gay scene was to have a bit of fun while being supportive of my loved ones (plus I love rainbows, so there's that). 

But of course it was a covert way for me to explore my own sexuality without making myself vulnerable to judgement.  I find it hilarious that I managed, with great efficiency, to hide my own sexuality from myself.  Of course I had to, as being anything other than straight, white catholic in 80s Ireland guaranteed social ostracism.  It was a dangerous time to be different.

We all know that denial is a river in Africa..... but it  also appears to have plenty of tributaries in Co.Monaghan.

It's criminal that I grew up in a time when sexual exploration meant being an outcast.  Our sexuality is central to who we are, and to be battered and shamed to comply to a social norm is the real sin.  An awful truth dawned on me that the damage inflicted on our identity doesn't stop with us as individuals. 

It also affects how we parent.  

If we don't understand our own sexuality, how on earth are we supposed to help our special needs kids navigate theirs?

It's tricky enough to walk our neurotypical kids through the shifting sands of hormones, identity and orientation.  Throw autism and an  attitude conditioned by shame and self-loathing into the mix, and we have a recipe for a steaming hot mess.

I think the way forward lies in our openness to admit that we don't have any answers for our kids.  It seems to me that the best way to discover who we are is by feeling our way along in the dark, without direction from tradition, parents, churches, peers or social expectations.  We can find our true, authentic path by attending to the still, small voice within.

It's entirely possible to grow in tandem with our kids, if we are humble enough to feel our way in the dark with them.

 

Autism & Mad Mothers

This has been one of the most difficult years of my life.  

There was Autism, usual family stuff, college and covid.  But in the Spring, the shell protecting my mental health cracked open and I fell to pieces.  One day, all the defenses I used to avoid my issues (maintaining facades, perfectionism, anxiety, depression, overwork, wine, rationalizing emotions, denying my own needs, unhealthy boundaries, whatever you're having yourself) just stopped working.

It was about fucking time.

My breakdown immersed me in a world of pain that I'd been avoiding for a very long time.

Many months of therapy have helped me to integrate most of my big psychological injuries.  There's still one or two sticky issues  I need to befriend, but I know I'll get there.  Tbh, I'd rather french kiss Boris Johnson after he's eaten a packet of Monster Munch, but you do what you gotta do.  Am wearing Big Girl pants now, and all that.

The big surprise is that processing the awfulness isn't as terrible as pouring all my energy into avoiding it.  I mean, therapy is horrendous.  It's like being atomized in a high-speed blender and then re-shaped in a really unfamiliar new mould.  It takes a while to get used to.  And making friends with the dark creatures in my mental basement has been...... unexpected.  

But avoiding it has been worse.  The relief of allowing the mask to slip is wonderful.  Breaking down gave me the freedom to recognize and discard what was bad for my soul.  It's a work in progress, but yanno.

Autism was the catalyst that forced me to engage with my mental health in a meaningful way.  It's very possible I would have continued to spin in my resistant groove for the rest of my days, had Autism not driven me mad.

It's kinda comical to be grateful for something that caused me pain, but here we are.  Alice in Wonderland knew her shit when she said "curiouser and curiouser".  

Autism & Labels

The more things change, the more they stay the same (deep, huh?  And I haven't even had a coffee yet).

I recently noticed the same old arguments circulating on social media again.   As well as being  little tedious, it's kinda surprising.  How can people yell at each other for so long and not move an inch? 

Maybe people just like shouting.   

Bunches of people are immovably shrill in their opinions about how autistic people identify themselves, and how they are addressed by neurotypical people.  The vitriol has been spiced up a notch by comparing the symbolic jigsaw piece to a swastika (the very drama!).  As with any argument, there are two, or more, sides.  I get that some people don't appreciate being viewed as a cryptic puzzle, or as a symbol of something missing.  I'm not crazy about it myself.  But I find it improbable that a jigsaw piece will incite mass autism-phobia, culminating in genocidal hysteria.  My son will not find himself  the subject of discrimination (or holidaying in a concentration camp) because of a puzzle piece.  

To be fair, historically labels have been used to create mistrust and segregation, sometimes resulting in injustice...... but this has been against a backdrop of social upheaval, economic crises and civic unrest.  Injustice never happens in a vacuum.  

It's not as two-dimensional as a simple logo sparking annihilation.  

Armageddon coming atcha.  Bring your jigsaw.  

The old shouting matches still rage about using the terms 'is autistic' or 'has autism'.  Some folk express stroke-inducing rage at being labelled 'autistic' as it infers that it is part (or all) of their identity.  Some object to being described as 'having autism' as it implies that they have a disease.  When my patience runs thin with the polarizations, I sometimes tell people my son caught Autism off a toilet seat.  I'm not always popular.  I like to hope that it's possible for people to have different opinions and still be friends, but maybe I'm an optimistic fool.  I just think there are more immediate things to be concerned about.

I have a different way of looking at it.

When I am scrubbing my son's shit off the walls (something I do less often these days thankfully), it doesn't much matter to me if he is autistic, has autism, or identifies as Gerald the three-legged hamster from Ardee.  I'm still scrubbing shit off the walls.  It seems like such a waste of time and energy.  My love for my son doesn't change based on the use of a word.  There are more productive uses of our precious resources.

I'm not autistic, so how dare I have an opinion about the impact of labels, right?

I was recently ascribed a bunch of labels to categorize my mental health difficulties.  I am very aware of the impact of labels.  It's hard when your fears become reality.  But with the labels, comes a sense of direction and the growing realisation that our difficulties do not mean we're weak or 'less than'.  Labels point me towards the areas I need to focus on.  They also afford me a degree of self-kindness when I am working through challenging moments.  

A label is not who I am, but a signpost to becoming a better version of myself.

How other people perceive our labels is not our business.  We have no control over that.  Even when they are being unkind or judgmental, its a reflection of them, not of you.  I believe it's not the word, but the intention behind it that makes a difference.

P.S.  Maybe the Nazis wouldn't have been taken so seriously if they had a pretty jigsaw logo embroidered on their lapels instead of a sinister up-side down cross.  

Just sayin'.