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.