The GPS you didn’t know you needed – navigating autism with support

Just in case no one has told you yet – this is a journey.  A marathon.  A life adaptive experience that some people would call an adventure.  When my angel boy was first diagnosed with autism just before the age of 2, I remember hearing about a story that mentioned a mum who was taking a plane ride, thinking she was going to Italy but there was some miscommunication, and she ended up in Holland.  So, when she got off the plane, it wasn’t what she was expecting.  She was ready to see the Colosseum and Trevi Fountain, but what she found was the Anne Frank House and the Van Gogh Museum.  Still beautiful, still amazing, still so much to explore, but not what she expected.

There’s one really big point that was left out of this story.  A huge detail that was missed, that parents of newly diagnosed autistic children need to know. When a new person lands in a new country they don’t typically pull over to the side of the road and cry their eyes out.  No.  A person in a new country does what one would expect ask for directions!!!

As parents we’re not expected to know it all.  We’re not expected to know where to go for accommodation or for food.  Where the good parts of town were and places we should avoid.  When the restaurants and cafes would close and how they were supposed to change over money.

Entering the autism journey is exactly that.  You’re entering a new world, and you’ve got to navigate where to go.

Not for all, but for some, the autism diagnosis brings about huge amounts of shame, blame, guilt and grief.  These emotions prevent the parent from asking for directions.  They’re trying to navigate this journey by themselves which is next to impossible.

I will talk on my own experiences: the sheer weight of shame, blame and guilt that I carried around for 4 years prior to telling my extended family and friends of my son’s diagnosis was huge.  It was a heavy, heavy burden to carry that would keep me up at night and stop me from fully showing up and advocating as a parent.

Do you know how hard it is to find your way around a new location without directions or GPS?  It’s hard.  Really bloody hard.

Don’t do what I did.  Don’t try to do it alone, thinking that you know best.  Life will throw you some serious curveballs and if you don’t have access to people and resources you won’t know which direction to go.  Heck you won’t even want to move for fear of getting it wrong…..that’s a topic for another day.

So, this is me telling you – please ask for directions, and that can look like:

– Listening to podcasts.
– Reading books.
– Being part of social media groups.
– Being part of an autism parent community.
– Getting recommendations from anyone and everyone – you won’t know if it’s going to work for your child unless you’ve tried it.
– Seeking out a coach, psychologist or Councillor.

Asking for directions doesn’t mean you’re weak.
Asking for directions doesn’t mean you’re ill informed.
Asking for directions doesn’t mean you suck as a parent.

It means you give a hoot about your child’s future.
It means you’re willing to put yourself out there, to find out if this is the right direction to go.
It means that you are expanding and growing and broadening your knowledge.

Don’t ever give up asking for directions, in the long run, it’ll save you time, money and your sanity.

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