Autism & Addiction

Last weekend my husband deleted over 2,300 episodes of Peppa Pig from Sky.  Two days later, Finian locked the sitting room door and un-deleted every fucking one of them.  His fine motor skills aren't great, so he didn't manage to give us the finger.  But I know he wanted to.

We laughed and said "gawd that kid is so addicted".  As I was eating chocolate and opening a bottle of wine.  Irony is a thundering fury-bitch, but she's usually worth listening to.  Hate that.

We tend to use the term 'addicted' loosely..... and I really ought to know better.  As I've talked about before, addiction tore my childhood apart.  It's taken a lot of therapy to help loosen it's grip on me. 

Of course Finian's Peppa Pig love-in is more aligned with the perseveration we see with autism, than with addiction.  So Finian gets a pass.

I can't speak with the same confidence about our weekend rioja and dairy milk, however.

What IS addiction though?  When does a pleasant pass-time become dysfunctional?

When we continue to repeat a behaviour for the rewarding hit, despite it being damaging (physically, socially or mentally), then we have a problem.  The dopamine surge is so overwhelmingly compelling that we are unaware of (or unconsciously deny) the harm we are doing to our bodies, minds, pockets, relationships and careers. We crave it in it's absence.  We surround ourselves with people who collude with our behaviour, and become increasingly disconnected from our own soul. We can be addicts and not even know it.

We can get addicted to anything.

Alcohol.  Prescription drugs.  Sex.  Porn.  Religion.  Instagram Likes.  Shopping.  Street drugs.  Gambling.  Sugar.  Dieting.  Martyrdom.  Peppa fucking Pig.  Cleaning.  Toxic relationships.  Exercise.  Candy Crush (true story).  Self-harming.  Shoes.  Keanu Reeves.

What we're addicted to doesn't really matter.  What's important is what it's shielding us from.

Addiction is seductive because it protects us from pain.

Addiction is soul-destroying because it protects us from pain.

Short-term respite at the expense of long-term wholeness.  

As the cheery Buddhists point out, life is suffering.  Sitting with, and owning, our awfulness is how we re-connect with ourselves.  Finding peace at the other side of  the (admittedly shitty) process is how we rediscover, and love, our true selves.

It's simple, but not easy.

Special needs parents need to be particularly vigilant.  We have plenty of reasons to crave escape.

Beneath the addiction, beneath the grief/shame/anger/whatever you're having yourself, is peace and self-love.  It's totally worth digging for.

Autism & Off-Days

Yesterday didn't start well.

My stars didn't so much align, as malign.......  probably in the waste pipe of a sewage treatment plant, as you will see.  

I took my car to the garage for a service, making sure my husband had booked a day off work to follow me down and collect me.  I organised getting my daughter to work on time.  I had a schedule prepared for Finian. I was altogether delighted with my executive prowess.  All I needed was an 80's power suit and a crown so I could rule the world.

Only to discover that I arrived at the garage a month early.

I managed to avoid breaking down in snotty tears and decided to save the situation by taking Finian shopping for new pyjamas.  My management skills restored, we headed off to Dunnes with renewed confidence.  Truth be told, I was more than a little smug that I had turned an irritating mistake into an opportunity.  Go, me.

We wandered along the pj section, and over in the next aisle a baby started crying.  Emboldened by my brilliant adaptability , I decided to seize the opportunity to teach Finian a little empathy.

"The baby is crying" I (kinda pointlessly) said.  "what does he need?"

"Turn the baby off " he suggested, a little too loudly.

The mother glowered.  I hoped she didn't have a brick in her bag.

"No"  I persisted "what would make the baby feel better?"

Finian was unmoved.  "Put the baby in the bin" he proposed decisively.  Practical, but not entirely ethical.

We grabbed some pyjamas and made a hasty exit before we could be eaten alive by a rabid mother.

Finian's mood got higher and higher until he jittered like a Wall Street hack who'd just pulled a straight 48 hour shift.  I've never done coke (and as a former ICU nurse I never will..... it's a scary drug) but I imagine his mood was similar.  His skin could barely contain him.  This was what we call his 'knife edge' mood.  There's a VERY thin line between (borderline manic) exuberance and having a fully-loaded, shit-flinging meltdown.

It was a long day.

But there was more to come.

As we left the shopping centre, I sneezed into my own mask, which was a novel experience.  Pebble dashing my face with my own saliva did not do wonders for my sense of competence.

When we got home, I realised the dog had a cut on his paw.  As I leaned forward to look at it, he expressed his gratitude by giving me a big, wet Frenchie.  Now, I don't know if you've ever had a dog's tongue in your mouth, but it made me wish I'd been born without a face.  I may have PTSD.

I was glad when the day ended.  Thankfully, Finian's mood stayed on the happy side of manic.  

Some days just belong in the bin.

for crap days (and crying babies)

Autism & Patience

I have a weird relationship with  Autism and patience.

I have spent actual years helping Finian to tolerate having his nails cut without breaking a sweat.  My vital signs remain god-like.  I make Buddhists look like squabbling toddlers.  I am the tranquil eye of a raging tornado.  If I was any more Zen, I'd be mistakenly buried alive but would be far too chill to worry about it.

Until I get stuck on the motorway behind a car doing forty.  

Suddenly I'm a screaming virago invoking the gods to visit the driver's genitals with purulent infections.  I invite him to perform illegal sexual acts with his mother.  I wonder aloud if his head might comfortably occupy his descending colon.

At these moments, my car is no place for the Mild Mannered or small children.

Autism seems to bring out my inner ascended angel (Saint Jean of Monaghan Bog sounds holy, no?), while minor annoyances unleash my inner hellhounds.  

It's kinda comical that two such polarised aspects exist within the same personality.  But that's the truth of it...... it's not accurate to describe someone as "nice" or "impatient" or a million other adjectives, when really we can be any of those things, some of the time.  Moods don't say anything about who we are.  They just describe how we react in the moment.

When Finian is in full-throttle meltdown, I channel the calming power of the Dalai Lama meets Mother Theresa.  

Yet if someone chews with their mouth open, I make the Incredible Hulk look like Dipsy from the Teletubbies (in my head..... I'm far too passive aggressive to say anything out loud.  I chose to experience my rage internally where it can fester into a nice stomach ulcer or an interesting psychiatric disorder).  

Autism helped me notice that very different parts of my personality can exist quite comfortably together.  I don't know if this is a good thing or not, but it definitely helps me invent creative swear words.

bitch, don't make me slap you

  

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 & Appearances

A couple of years ago, we placed a log on top of our stove to fill a gap between it and the chimney.  To most people, it seems to be an attempt to introduce a little rustic whimsy into our dining room.  However, I hate to throw icy water across the Beautiful Homes  illusion, but the truth is that it's there to stop the cat dumping a load behind it.  

That log is an unromantic metaphor for life with Autism.

When you live with Autism, a fundamental law is that things are often not as they appear to be.  

When Finian starts rapping about locking people's cars, he's not concerned for the security of the vehicles of his loved ones.  What he's communicating is that he's feeling a bit frustrated.

When he requests a shower it means he's attempting to self-regulate a need for sensory input.  He really doesn't care if he smells like a piece of week-old quiche.

When he escalates to threats of pooing on people's beds, he's not actually going to relieve himself on my favourite duvet (although now that I think of it, he actually did  leave a surprise turd on our bed once, which I made him clean up.... he never did it again).  Threats of waste disposal means it's time to bring in the bomb squad and defuse whatever emotional explosion he's about to ignite.

It really helps if you can speak Autism.

As you can see, shit is a recurring theme in our home, both literally and figuratively.  There's definitely a pun in there somewhere about using a log to stop the cat producing one, but I'm not quite at full capacity today.  Forgive me.  I'll produce much better shit next time.

We're working with school to give Finian the language to express his feelings.  But it's become our normal to have to deconstruct images and phrases to decipher hidden meanings. We're used to taking nothing at face value.

So it's a huge shock to me when something is exactly as it appears to be. I'm not quite sure what to do with transparency.

Finian has taught me to listen to what is being said behind the words.  It's a great skill to bring into my counselling training.  I could do with less anxiety about finding rogue turds in unexpected places, but it's fun to find the silver lining.

Autism & Stillness

I love my FitBit.

It motivates me to keep active, and when I hit my daily 10,000 steps I feel like the next obvious step for me is pro-athletics (right after I win a Nobel prize for saving the planet, publish a series of novels and find a cure for cancer).  

I dream big.

My somewhat inflated ambitions tend to get flushed down the Great Toilet of Dreams, though, when I remember that I'm not a medical scientist, and writing novels is really really hard.  Also,  If I strapped my FitBit to Finian's wrist it'd run out of numbers by lunchtime.

Finian rarely stops moving.

He has a sensory processing disorder which means it's hard for him to make sense of the information his body is giving him.  He has to keep moving to regulate his sense of where his body is in space, so he paces a lot.  

Day and night.  

While eating, watching TV and brushing his teeth.  

While waiting for the school bus and standing in queues.  

This need was especially difficult to deal with during lockdown, and caused an escalation in meltdowns and self-harming episodes.   It was one of the factors that lead to my mental crash-and-burn earlier this year.

Part of my on-going therapy is about learning to cultivate inner stillness (a steady work in progress).  Inner quiet helps me to deconstruct painful defenses and get to know and honour my authentic self.  That said, I'd prefer if my authentic self had better behaved hair, but whatcha gonna do?  A calm centre facilitates mental clarity and emotional equilibrium.  It's hard to find fault with it.

The irony isn't lost on me that Finian's insatiable need for movement has lead me to find inner stillness.  What I wonder, though, is if it's possible for Finian to experience inner calm, or if his cogs are permanently set to cruise control?  His eternal pacing is his body's way of trying to reach a state of balance, but it remains one of those painful, unanswerable questions if he is capable of feeling true peace.

Autism & Playfulness

It's been a tough two weeks for Finian and, by extension, us.

He spent a fortnight screaming, sensory seeking, barely sleeping, avoiding food and needing constant reassurance.  It didn't pass the tipping point of self-harm or a full on meltdown, but we were worn out by the time his mood leveled out.

It's often hard to pinpoint a trigger for a mood change.  This time, though, it seems that his return to school was the guilty party.  In addition, some hormonal gymnastics were going on as he had an acne outbreak that looked like a medieval plague had partied on his face. Oh, and he was madly anxious about this being his final year at school.  So altogether it created a perfect stew to nicely boil his racing emotions.

It really wasn't fun.

Finian was miserable, tired and cranky and it didn't take long for the entire family to catch up with him. 

Absence of fun and joy can make living with Autism unbearable. We actually need to foster our own playfulness so that we can tolerate the difficult spells a little easier.  My husband and I consciously create opportunities where we can be irresponsible, carefree and a bit giddy.  We go on lots of coffee dates, hikes and  kayaking trips.  We cuddle up on the sofa, drink wine and watch comedies.  We spend as much time with friends as we can.

This is not with the intention of portraying ourselves as Barbie and Ken (besides, my boobs aren't perky enough and James has too much body hair to qualify).  We need fun so that we're not arguing over who gets the china in a divorce court down the line.

Having fun is serious business.

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