Awareness

Trying to describe
autism in one
sentence is like
trying to describe
what the color
nine smells like.

~Stephanie Grigley Eaton

It is April 2nd, World Autism Awareness Day.

Whether you know me in person, as a series of small squares on an Instagram feed, or through words on a computer screen, chances are that you are aware of autism. I use the word a lot.

Autism.

Autism Spectrum Disorder.

Autistic.

ASD.

I’m sure you are aware of the statistics, the misconceptions, the conspiracy theories, and little blue puzzle pieces. You are aware of Rain Man and Einstein, and of that viral video of an everyday father helping his son through a meltdown.

I know you are aware.

I also know that you have heard the statement “if you have met one person with autism, then you have met one person with autism”. Autism is different for every person…every family. It is incredibly complex. Trying to describe autism in one sitting would be impossible; you would get a surface view but miss the little nuances that can change daily. You are aware of this.

And yet, I hear so often “oh, that’s not what I expected autism to look like”. I get asked where Jason is on the spectrum. If I asked you where you are on the scale of happiness, would you be able to answer? It might be difficult, as your happiness can change daily. You may be high on the scale when you think about your family, but low when you think about work life. Then, suddenly, you get a pay raise and everything shifts again.

This is how it is with autism. Tomorrow may be completely different than yesterday. I am aware of this.

If there is one thing I can stress on this special day, it is that autism is not black and white.

It is a vibrant rainbow, with the colours swirling around each other in constant motion.

Did you know that Jason watches YouTube videos of washing machines with the sound turned up as high as possible? But, hearing his sister cry can set off a meltdown.

Did you know that we have to be on constant alert when we are visitors in someone’s home? If we look away for one moment he could be gone…hiding in the garage…eating snacks in the pantry…grabbing fish out of the tank with his bare hands…running down the street from a door left unlocked. But, when we are at home, Jason hardly leaves his bedroom. We even went through a stage where he kicked and screamed and raged when we would try to get him to eat dinner in the dining room.

Did you know that most days Jason can’t stand to be near his little sister, and other days we will find the giggling together while playing with Peppa Pig dolls?

Did you know that in a single day I can experience tears of pure happiness and tears of complete despair? I could be curled up in the corner of my bedroom with silent sobs racking my body, and just a few hours later feel overcome with pride and amazement at a new milestone achieved.

Autism is filled with these intense juxtapositions: predictability mixed with uncertainty, sensory seeking contrasted with visceral avoidance, progress mirrored by regression.

Joyful hope balanced with silent acquiescence.

Blinding lights and calming shadows.

Autism is so much more than numbers and percentages and a list of possible signs. It is knowing that the colour nine smells like sailboats. But…only for today.

Today, you are aware of this.