Autism & Death

Death is a difficult subject.

It is something we prefer to not-think about as a nebulous, hazy cloud on a distant horizon.  It is something we would prefer to not sharpen into focus with words or edges.

Death happens to other people.  

It doesn't happen to us.  And it definitely doesn't happen to our children.

Until it does.

I've been blessed (as a former nurse) with the honour of sharing this profound event with many people, sometimes in the company of their loved ones.  I'm also privileged to live in a culture where funerals and wakes are a public celebration of life, as well as an opportunity to express grief and loss.  Irish wakes are often the saddest, funniest, most deeply connecting social events we attend.  Because of my experiences, death doesn't repulse, or even scare me all that much.  Quite the opposite, I honour it.

But, no parent should ever bury their child. 

In the last few months, two fellow special needs mums lost their sons.  Over the years, many more of my special needs circle have buried children.  When this happens, I hold my kids a little bit tighter, feeling guilty gratitude that it wasn't my kid being prayed for.  But every time I attend a funeral, or send condolences, I am reminded of  how vulnerable our kids are.

The average life expectancy of an autistic person is 54.  Throw severe autism into the mix, and that figure drops to 39.

These are real numbers.

This is because autistic people often have co-morbidities (such as epilepsy), and may lack the ability to identify and manage health issues.  Accidents, often related to elopement, are a major factor.  Isolation, depression and suicide are in the mix.  Horrifyingly, Forbes magazine report the deaths of intellectually disabled people in police custody as a "global pandemic", especially when laced with gender and racial flavours.

But mostly, it's because our kids have been born into a world not designed for them.  Lack of social engagement and access to health care comes up with depressing regularity in the literature.

This is not a self-pitying exercise in victimised hand-wringing.  This is reality.  When my husband and I die, Finian will live at the mercy of strangers.

I very much believe that life is a gift to be experienced, explored, passionately loved/hated, played with, sometimes suffered, learned from, transcended, improved and fully interreacted with.  It is something to dive joyfully into, to be soaked and saturated by, and to be changed completely by.  Life is not meant to be sullenly endured while we wait to die.  We each have an expiry date, and each day endured is a day wasted.

It's hard to sit with a world that doesn't value our special kids and adults. It's hard to not be certain that Finian will continue to be loved, celebrated and cherished as a valuable part of society after I am gone.  I am blessed that he has family and friends who I trust to advocate for him after I've been jettisoned into the ether.  But it's sad that his life expectancy, both in age and quality, is compromised by a blinkered world.

Autism & Sadness

Sadness is an emotion in need of good PR representation.

It's usually labelled as a 'negative' emotion and we're taught to avoid it at all costs.  But sadness is an important feature of our emotional landscape.  When we're taught that sadness is unattractive, weak or embarrassing, we attach shame to it and learn to suppress it.  Emotions that are not allowed to flow and process become stuck.  They stagnate into defensive blocks and may eventually find expression in physical or mental illness.  

Paradoxically, it's impossible to experience authentic love and joy without acknowledging the inevitability of loss.  We can't know the heights of joy and love without feeling them against the counterfoil of loss and sadness.  

We apologise for shedding tears.  Repeated messages like dry your eyes, put a brave face on, get over yourself etc. cripple our authenticity and we learn to present an acceptably agreeable face to the world.  We run away to cry in the privacy of locked rooms.  Not alone do we avoid expressing sadness, but we are terrified of feeling it.

Except for Finian.

He does sad like a pro.

I envy Finian's ability to express his emotions without censor.  If I buy the wrong chocolate spread at Lidl, or Netflix cancels Bob the Builder, or there's a hole in his favourite pyjamas, he howls with abandon.  He has no concerns about ugly-crying, appearing out of control, or embarrassing those around him.  After a spell of backbone-deep sobbing, he's processed it and is good to go.

It's taken me six months of intense psychotherapy to achieve this and I'm supposed to be neurotypical.  As ever, Finian is my favourite teacher.

One thing we can be sure of is that life will give us plenty to cry about, so it's a skill worth mastering. Processing sadness isn't fun.  To be honest I'd rather chew a pig farmer's boot than sit with my sadness and learn from it.  But it's worth giving grief room to move to appreciate the good stuff.

Autism & Restrictions

When the first covid lockdown was imposed, many special needs parents were match-fit for the coming months. Lots of us were used to life with limited freedom.  Many of us had already given up friends, careers, and sometimes even marriages to adjust to life in a different groove.  As I've often said, ultimately these losses were not a bad thing (even though they weren't welcome changes at the time).  I like the person I've grown into much better because of Autism.

So when covid first hit, life didn't change all that much for me.  I already had a PhD in Restricted Living and was working towards my doctorate in General Awesomeness. Lockdown was gonna be a breeze, and I was destined to graduate as Dr Awesome (with honours).

Of course, the universe had other plans.  It would have been fine if it decided to deliver a discreet slice of humility pie with a gentle reminder to cop the fuck on.  

But the universe didn't do that.  

The universe chose to deliver its life lesson by pouring my mental health into a Magimix and blending it with marshmallows and batshit.  Being a seasoned autism parent, with years of restricted-living experience, did not protect me from cracking open like a fragile (if fabulous) egg.

me losing my shit

I'm well on the road to recovery now, but it was a reminder that we are all vulnerable, no matter how strong we think we are.

I went on a forest walk with my family yesterday.  It was magic to relax, appreciate nature and enjoy each others company.  My daughter and I commented that a few years ago, the same walk with Finian would have been a stress filled nightmare.  Its kinda ironic that I noticed my life becoming less restricted during lockdown.  

Dealing with my mental health problems helped me to see restrictions differently (some are tangible limitations, some are nothing more than our own perceptions).  I would have expected the double whammy of restrictions and a nervous breakdown to be the unraveling of me.... and it was for a little while.  But ultimately they opened me to appreciate the quiet things in life that I often didn't notice.   

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