Autism & Masking

We tend to think of autism as a childhood thing.  

This is kinda dumbass as, inevitably, cute kids sprout into hairy, stinky (albeit impossibly handsome) adults.  I should know, as I've got several of my very own.  

Autistic kids are not just for Christmas, it seems.  We get to keep them forever and ever.  

And ever.

The assumption that autism is a kid-thing is doubly dumbass, as more and more people are being diagnosed well into adulthood.

In Celebrity-Land Anthony Hopkins, Darryl Hannah, Dan Ackroyd, Matt Haig and Elon Musk have been diagnosed as adults.  Not because they recently caught autism off a dodgy toilet seat, but because they were born with it like everyone else.

Like other late-diagnosed people, they probably learned to mask the signs to help them survive in an alien world.

Masking is a great term.  It describes exactly what it does on the tin.  If you can visualise someone printing out a 3D copy of someone else's face and placing it over their own, then you understand it.  Masking is a really clever way to compensate for difficulties with reading social cues (like facial expressions and tone of voice).  It's used to help a person fit in socially, to feel safe, accepted and to avoid mistreatment. Masking is when a person watches and copies someone else's responses, because they know an appropriate response is required, but they are unable to produce one themselves. The result helps the undiagnosed person pass themselves off as neurotypical, although often there is an 'oddness' that others intuitively sense.  

It's hard to imagine how exhausting this must be.

Of course, autistics don't have the monopoly on masking.  Plenty of neurotypicals protect themselves with assumed personas, sometimes becoming so invested in their mask that they lose touch with their authentic identity (this is a large part of my work as a counsellor).  It's a lonely place to be.  Imagine the awfulness of not only being unknown by others, but also being unknown by yourself.

Understanding masking has been part of the perceived increase in autism.  There isn't more autism.  We've just got better at diagnosing it.

On a sidenote, masking seems to be used more by females, which may flip the 'autism is a boy thing' trope on it's head.

Mercifully, Finian's particular flavour of autism doesn't require masking.  The flying fucks he gives about being socially accepted are in negative numbers.  

I can't tell you how much I envy him.

So, masking isn't a good or a bad thing.  It's just a thing..... and a very useful one in the short term.  But long term, masking can lead to burnout, depression, anxiety and whatever you're having yourself.  Having the insight and courage (sometimes requiring help) to expose your true, vulnerable self is what gives life depth and meaning.  It's always worth questioning what lies beneath the façade.

   

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 & 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 & 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 & Muses

So, I'm heading into the last stretch of my foundation degree.  

In my final essay I'm trying to coax words into well-behaved creatures that actually mean something.  I'm quite happy to let them thrum with a little wildness, as long as they help me jitterbug across the finish line.  Written words are my semi-feral friends.

I also have a presentation to prepare.  I'm confident enough to elaborate my points creatively, using my crocheted throws, with their many layers, and my paintings that make zero sense until they're finished.  Energy, colour, chaos and direction will illuminate my talk.

I'm really proud that, at the age of 51, my spirit of adventure and curiosity is exponentially burning.  My age has become an advantage rather than a limitation.

This is not what's keeping me awake at night.

It's the viva.

In the viva, I will sit before a panel and have to account for myself, without the shield of written words or power points.  There will be no props.  I will have to explain how I work, why I work, and just exactly who I think I am.  

I'd rather be Vladamir Putin's personal bum licker.

The prospect of the viva has re-awakened a stubborn core belief that I don't seem to have quite excavated yet.  Hate that.

As my training taught me, I leaned into the anxiety and discovered that I'm terrified of being a fake.  And even worse, being outed as a fake.  When my tutors discover that I tried to fool them by being clever, interesting and competent, they'll be disgusted by my boring, useless neediness.  My fear is that they'll reject the real, exposed me.  That my vulnerable self will be abandoned.

This is an opportunuty for me to embrace more layers of my shadow.  I know how important it is to integrate my unconscious so that it doesn't reactively run the show.    

It's just that sometimes I really wish I was a Nepalese goat herder.

                                                                           

Being fully human is insane.

Luckily, I have a Finian-shaped muse who I look to for inspiration.  He manages the lunacy of  this world by wearing pyjamas all day and being wholly authentic.  His inner world is his outer world.   He doesn't need defences to protect him from being unacceptable.  And I get to live with him every day.

It's about being able to integrate paradoxes.  Owning my fear doesn't magic it away, but it IS liberating.  So I get to feel scared and free at the same time.  What a ridiculous mindfuck.

I'm putting together a post-viva recovery kit of chocolate, pyjamas (naturally) and rioja.  And even though they don't know it yet, my husband is going to give me foot massages, and my daughter is going to binge-watch Brooklyn 99 with me.  And Finian will continue to muse me.

Holy props, Batman!

Autism & Naked Walking

I submitted an essay today as part of my final semester at college.

To ensure its safe passage across the ether, it has been annointed by the blood of my firstborn.  I had it blessed by wise virgins (surprisingly hard to find) by the light of a strawberry moon.  Prior to it's dispatch I realigned its chakras with smudged sage.  Its aura was protected by incanting sacred mantras in ancient Arameic.  I thought it prudent to throw in a little garlic and holy water for good measure, because, vampires.

Y'know, the usual.

All the magic spells were evoked against a backdrop of Bob the fucking Builder in Albanian. 

My brain has been Moulinexed into particularly runny porridge, so I went naked walking to recalibrate.

Disappointingly, naked walking isn't as decadent (or chilly) as it sounds.  

Naked walking is mindfully exercising without the distraction of music, podcasts, phones, Autism, ...... or anything superfluous to surviving a brisk February afternoon.  So..... nothing in my ears.  Nothing buzzing in my pocket.  Just me and my senses and the elements.

The birds are starting to build now, so they were rowdy and energetic.  Sudden flashbombs of sunlight pierced the clouds and exploded back into darkness.  Rainbows played catch with the shadows.  Everywhere was light and movement and windrush.

It was magic.

I was alone, but part of something much greater than myself.

By the time I got home, I was re-centred and mindful that there's a greater world than my blinkered college microcosm.

Within a few hours I was once again part of the flow of family life.  Our ordinary dramas reminded me that I'm part of the poorer, uglier Kardashians.  A bit of naked walking helps me love every minute of it.

"ffs the bitch is watching us"

Autism & Therapy

The more personal development I do, the more I'm in awe of Finian.

The kid who is labelled as having 'special needs' lives in a state of self-acceptance and wholesomeness that most of us can only dream of.

To be fair, Finian does have special needs.....  anyone who routinely chows down on furniture and enjoys a nice game of chicken with traffic has additional requirements.  But 'special needs' is not a uniform blanket that covers every aspect of his being.

As far as I can tell, Finno embodies mindfully living in the present and doesn't waste time ruminating over the past or worrying about the future.  He seems to navigate this earth fearlessly, with a solid sense of his own identity.  He is who he is;  he doesn't fretfully construct a persona to make people love him.  People love him anyway.  

His authentic nature is saving me a fortune in therapy.

As a student counsellor, I'm expected to rise to uncomfortable challenges.

Well, to be fair, things like time management, academics and life balance are difficulties to be expected.  No-one goes to college for an easy ride.

It's the personal development demands of the course that blindside me occasionally.  Now and again I faceplant into that psychological shitpit and have a good old roll around in it.

It's mandatory that we attend our own personal therapy.... this is so that we're aware of our own stuff and don't project them onto clients.  But it occurred to me, that most of my work is around un-learning unhelpful patterns and beliefs.  Finian never bought into this crap in the first place.  It's like Autism has betowed upon him the gift of Not Giving a Flying Fuck (patented counselling term), and I could really do with more of that. 

He doesn't do defence mechanisms.

I've had to dig deep to find the courage and humility to make myself vulnerable (and authentic) to my therapist, and then to my loved ones.  This is a risk, with sometimes painful consequences.  But if I expect this level of openness from my clients, I need to be able to walk the walk myself.  Finian never learned to shut his real Self off from others, so he always knew exactly who he is.

I've had to un-learn relating to others from my ego, and try harder to connect from my deeper, more genuine Self.  I do this by slowing down, checking my responses and being painfully honest about what's motivating them.  It's a work in progress.  For example, sometimes on reflection, I'll realise that I've said something to appear clever instead of genuinely connecting with someone.  Or I'll respond in a certain, insincere, way to prevent a hostile reaction from the other person.  Finian doesn't give a shit sideways (also a patented counselling term) about any of this.  How others perceive him isn't even at the races.  I'm more than a little jealous.

It's not that I spend all my time joylessly naval gazing.  Occassionally I like to get nuts with the dark arts of crochet, or I've been known to crack open a new book midfuckingweek.  If I'm feeling really freaky, I'll drink tea right before bed.  So lock my bad ass up.

We have so much to learn from diversity, if we have the eyes to see it and the heart to feel it.

Also, I may have said before, but Finian would make a great therapist...... if he'd keep his clothes on and stop eating the chairs.

mmmmmm, delicious

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 & 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 & 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

Autism & Kindness

Kindness is a tricky concept to teach an autistic kid.

Finian gets that it's expected of him to occasionally share his salt & vinegar Tayto, but I'm pretty sure he only complies to get me outta his face and not out of a sense of moral obligation. 

Really, it's a tough enough gig for many neurotypical people to grasp.  

Kindness, as the cliche goes, is often mistaken for weakness.  This is a sad loss for the western world (it seems to be a western thing to admire stomping all over other people to get what you want?  Just look at the movies we love).  But kindness is not martyrdom.  

As I get older (and work through a lot more therapy) kindness is starting to appear as more of a superpower.  Maintaining the belief that kindness is the antidote to an often jaded, cynical world is an act of faith.  It requires strength and stamina that some days I have to dig awfully deep to find.

Here's what I believe.

Any act of kindness, no matter how small, creates a ripple effect that exponentially increases positivity and goodness.  Ultimately we all benefit, even indirectly, as it makes the world a better place.  Cynics may roll their eyes, but cynicism is lazy.  It takes thought and effort to emit kindness into a world you may have been battered and abused by.

I guess a caveat is that being kind should not hurt you.  There's nothing to be gained by channeling your inner doormat and tattooing 'masochist' across your face (you'd need a pretty big face tbf).  We are also obliged to practice kindness towards ourselves.

I think a particular challenge is to extend kindness (without hurting ourselves) to those who hurt us, or who we don't like.  That's next level Buddhist shit right there.  It makes sense that wishing ill to others is like drinking poison and expecting the other person to die.  The only person we make sick is ourselves.  It's a counter-intuitive win-win to extend good wishes towards those who wounded us.

Bitterness shrinks the soul and condemns us to live in the half-light.  Love is liberation.

A really hard part of healing my own wounds is being brave enough to experience the pain and bitterness I  buried many years ago. Owning the awfulness I avoided with overwork, perfectionism, wine and fakery has only been possible because I try to be kind to myself.   I've cried more in the last six months than in five decades (and I really fucking hate crying), but I also like myself better.

Being kind to myself has increased my desire to be kind to others, as I know how healing it is.

Now all I have to do is teach this to my autistic son.

morals never tasted so good

Autism & Why I'm an Asshole

Epiphanies aren't all they're cracked up to be.

Having a blinding moment of insight usually means that, up until this point, you've been kinda an asshole (and by 'you', I mean 'me').  It's never my favourite moment to realise this.

I was bopping around the house with Finian and he wanted to go for a drive, but something happened that prevented us from going.  Instead of losing his shit, he amped up his inner Zen and shrugged it off.  He met this with an inner calm that surprised me, and I was struck by his acceptance that our change of plan was beyond his control.

We waste an insane amount of time and energy trying to change the unchangeable.  It occurred to me that we have no control over our outer reality.  This seems obvious, but we often act as if we can bend our environment.  But we can't change the weather, or make the driver in front of us speed up, or make our crush fall in love with us.  We can't force other people to see us the way we want them to.  We can't control random occurrences that scupper a road trip with our kids.  These perceived obstacles enrage us and we become consumed with the need to overcome them.  They devour our energy.

Imagine the creativity we could unlock if we channeled all that energy into developing our own inner strengths? 

It all starts with our self-concept, and the lies we tell ourselves to maintain it.

Our self-concept is who we imagine we are.  We construct it from what other people tell us we should be like, as well as who we imagine we want to be.  We build it as a shield to protect our vulnerable Real Self from the judgement of ourselves and others.  So basically, we become who other people want us to be, so that we will be safe and loved.  Eventually, we may come to believe that our self-concept is real.  Our Real Self  may become silenced and we don't achieve the potential we're capable of, depending on the level of judgment we are exposed to. It's kinda a bum deal.  

It's really only through having the courage and insight to dismantle our false ideas about ourselves that we can embrace our inner truth.  The energy we waste trying to maintain our self-concept could be vastly better used to become the best version of ourselves.

We drive ourselves crazy trying to change an unchangeable world to support our self-concept.  We scream at the slow driver.  We blame the weather for being in a bad mood.  We feel victimized by aging. Imagine accepting reality for what it is, free from the terrible anxiety of trying to twist it to fit a false agenda?

Acceptance doesn't mean passively enduring things that are bad for our soul.  It's not the same as giving up.  Finian knows this, and he kindly schooled me by being chill about change.

Autism & Authenticity

Finian has authenticity nailed.

At the risk of generalizing, most autistic people I know present their true Self to the world.  Finian doesn't do personas, mind games or subterfuge.

If Finian doesn't like you, you may be escorted to the front door with an unambiguous "bye bye" (true story).  If he feels like indulging in a spot of naturism, he'll happily deposit his clothes on the nearest floor-drobe.  If your armpits smell like out-of-date ham, he'll advise you to have a shower (usually adding that you "smell manky").

Its fair to say that his flavour of authenticity may be a little.... blunt.  For most of us, it'd be wise to dial down the truth bombs.  But authenticity is a trait to aspire to.

As a counselling student, I am expected to invest a lot of time and energy in becoming as authentic as I can.  This is so that I am aware of my own issues and don't project them onto my clients.  It's about keeping my clients safe.  

Developing authenticity is painful and unpretty.  As well as making friends with our good stuff, we have to uncover and examine our flaws, traumas and unlikable aspects.  For example, I like that I'm open, funny (I find myself hilarious) and fiercely protective of those I love.  I'm not so crazy, however, about my tenancy to be insecure, panicky and clingy within relationships.  This is not an attractive trait, boys and girls, and will likely drive your loved ones nuts.  I'm working on this and often fail spectacularly, but failure is educational (right?  right???).  Hopefully this will help me become a better counsellor and a less annoying human.

Then there's Finian.  He is the most singularly authentic person I've ever met.  He doesn't need therapy or hours of navel gazing to confidently express his true Self.  He is who he is, and embodies an attitude of "fuck you" if you don't like that.  He could make a great counsellor if he'd keep his clothes on and stop telling people they stink.

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

Autism & Loss

It's hard to imagine what my life would look like without Autism.

Fortunately, its just not something that ever occupied too much of my brain space. 

I fully embraced the enormity of Autism a long time ago, and never waste energy on bitter 'what-ifs'.  At the age of almost 17, Finian 'should' be agonizing over dating, flexing his social muscles in front of his friends and (maybe) wondering about college or careers.  He would almost definitely be smoking and drinking behind my back.  He'd be driving me insane wanting lifts everywhere, and be spending way too much time surfing internet porn channels.  He'd be a walking fire hazard due to the amount of gel cementing his barnet.  His bedroom would be a health & safety nightmare filled with objects so manky that they might be considered living organisms.  

I don't feel a sense of loss over this (no matter how tongue in cheek I sound about it).  I fully accept and love him just as he is.

What I wonder about now and again is how different my life would be if Finian was neurotypical.  

I really wouldn't want to be that person.

On the surface of it, Autism was awful.  It galloped into my life, napalmed my values and belief systems, and obliterated my social and emotional landscape.  It turned my world view on it's head.  For a while, everything was alien and unfamiliar.  I lost a lot.

I lost my career, friends, a social life.  I lost income, freedom and opportunities.  I lost much, much sleep.  I lost what I believed was my identity.

And thank God.

Loss is not always a negative thing.  

Autism wasted no time in shaking off my materialist, egocentric outer shell.  It laid me bare to continue the real work of cultivating my authentic self.  I will always be grateful to it for that.

The reason I can't imagine what life would look like without Autism, is because I don't want to.  My life is harder, fuller and better than I could ever have hoped for.  

Life's lessons come in strange packages.  It's a joy to recognize this.

my favourite teacher

 

 

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'.

Autism & Identity

There is nothing subtle about Autism.

It announces it's arrival with blunt hammer blows and doesn't much care about the collateral damage it creates.  It impacts our kids in a profoundly obvious way.  What may not be immediately apparent, is that the body blows it inflicts on parents and carers are just as foundational.

When Finian was first diagnosed I read approximately 87,000 papers on Autism (only a small exaggeration) and watched twice as many documentaries.  I joined support groups.  I informed myself about therapies, education and interventions.  I spoke at length with teachers and therapists.  I rolled up my sleeves and fought Finian's corner for access to appropriate schools and services.  My tunnel vision only allowed me read books that had the word Autism in the title.  I stopped watching TV.  I talked, walked and dreamt Autism.  It filled my field of vision.  It seemed necessary, for the survival of my son, to immerse myself in Autism and inhale it into my bone marrow.

I told myself I consumed Autism so I could be a better parent to my son.  

In truth, of course, Autism consumed me.

It has woven itself into the spaces between my cells and lined my internal systems with tenacity.

Now that Finian is a young man, the day is coming when he will move into a living situation that will better suit his needs (and ours).   One day Autism will no longer be my centre of gravity.   Waking up to this fact evokes fear and excitement in equal measures.  Starting to extricate who I really am from the version of myself that is bound up with Autism is a scary, but galvanising, business.

It's not unusual for new parents to lose a sense of themselves as a whole, unique person when they become "mum/dad" instead of a name.  Eventually, this pattern tends to play itself out as children grow up and push for their own independence.  However, having a child with special needs muddies the developmental water.  The child often remains dependent into adulthood, and the parent remains deeply invested in maintaining the role of nurturing protector.  It is easy to fall into a pattern of not knowing who you are independent of the other person.

Starting to figure out your real Self, as separate from the version you have been told/believe you are, is like opening a map but discovering there are no coordinates.  Or directions.  And the compass is broken.  Plus you don't know your left from your right (true story).

While this can initially feel frightening, there's also an energising element of curiosity and excitement.  Creating a new map gives you the freedom to explore aspects of yourself that hid in the shadows.  Maybe you're an artist?  Maybe you like dancing? Maybe you have an untapped gift for Swiss yodeling?   Autism can devour the mental space we have for fun and creativity, but I have also used it as an excuse to avoid the anxiety of exploring new territory.  I have many times nailed myself to the Autism cross and said 'I can't try that because ...'.   It became, at times, a convenient get-out-of-jail-free card to 'protect' me from the shame of trying and failing.

What a shame to go through life and not become the best possible version of myself.

"time to get offa this thing"

Figuring out your identity is the work of a lifetime.  It means becoming familiar with your comfort zone and pushing beyond it.  It means being open to new experiences in the hope that it could spark a creative flame within you.  It means getting real about your own flaws and committing to resolve them in a tangible way.  

Special needs parents are not short of courage.  It seems wise to direct some of that inwards and breathe life into the Self that is waiting to set the world on fire.