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 & 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 & 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 & Queer Eye

It hasn't been the easiest evening.

I missed yoga, burned the dinner and lost my glasses, all because of autism.

Finian is "exploring his emotions" (parenting code for being a massive pain in the arse), and is currently in his Unstable Nuclear Missile phase.  Everything is wrong.  He wants me to fix All The Things NOW.  It's hard to tell if he's singing or crying.  The wrong anything could trigger an explosion that might destabilise the earth's orbit.  

My son's bad mood could actually accelerate global warming.   

I'm not sure I want to become famous for this.

So before I get too comfortable on my cross (the view's great, but the nails kinda hurt), it's worth getting curious about looking at things in a different way.  

Autism sucks, that's a given.  But being martyred to it is optional.  

It's possible I burned the dinner because I'm a mediocre cook with the planning skills of a drunk toddler.  A myopic adult should know better than to take off the glasses they need to find their glasses.  

Missing yoga, though, is definitely on autism.  I couldn't leave my daughter to watch an autistic kid with the emotional stability of uranium.  No amount of downward facing dogs would make that OK.

But, there's always another way of looking at things.

Reframing the picture doesn't mean sticking metaphorical fingers in your ears to deny reality, but sometimes stepping back and being open to a different perspective can put a positive spin on a crappy situation.

So while I freely acknowledge that (this evening, anyway), my son is a Finian-shaped bag of wasps with all the charm of a farty rhinoceros, I'm choosing a different lens to view things through.  

I got to light the fire, change into my pjs extra early, and binge watch Queer Eye, while keeping an ear out for emotional volcanos.  So far, Finian is happily (and loudly) belting out the theme tune to Wonder Pets (in Hungarian), so all remains good.

So I'm shamelessly applying my own Queer Eye (am fairly certain they won't sue me) to view my own world in a healthier way.  

(p.s I love my son and don't really think he's a farty rhinoceros.........)

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 & Choices

I made an unwise life choice last night, and I regret nothing.

I ate a particularly delicious bag of cheese and onion crisps just before going to bed.  I woke up wondering if overnight a family of incontinent weasels had used my mouth as a public convenience (and neglected to flush when they'd finished).  The crisps were totally worth a case of morning potty mouth, but I thought it only fair to gargle with industrial strength mouthwash before kissing my husband good morning. 

We make choices all the time.  Its part of prioritizing, surviving and building our identity.

For example.

I made a choice to commit to therapy.  It is shockingly painful and deeply exhausting.  Mostly, I'd rather eat a tractor tyre than process the stuff I need to.  But I consciously choose to do some hard work to level up as a human.

But it seems to me that much of our life choices are either unconscious, or are made on our behalf by other people. So often, we continue to make decisions using outdated templates, or we conform to other people's expectations.

It occurred to me that I could extend this notion to Finian and try a little harder to encourage him to make his own decisions.  It's kinda complicated with Autism, though.  If I gave him free rein, Finian would chose to play chicken with traffic, eat hair-clips (a new favourite) and be positively cavalier about nudity.  So some caveats have to be applied.

But helping him to make decisions is an important part of establishing his own identity.  How will he know what style of clothes he prefers if I pick his outfit for him?  How will he discover hidden talents if I 'protect' him from dangerous activities?  How will he learn what delights him if I micro manage his free time?

Making our own decisions and owning our mistakes are an important part of character building.  This applies to autistic people too.  Being 'kind' and making their decisions for them is ultimately counter-productive (btw I'm totally talking to myself here) and stunts growth.

Luckily my marriage survived last night's unwise decision.  To be fair, James would kiss me anyway because he loves me and a bit of breath-stink wouldn't stop him.  But choices, and their consequences, would be so much more enriching if made consciously and with ownership. 

the test of any marriage