My son Austen* looks like
most nine-year-olds, except perhaps a bit taller, with long legs that carry him
swiftly across the ground as he races you to the car or the door of the house
or the mailbox. He has curly brown hair, golden brown skin and painfully long,
lush eyelashes ringing his deep brown eyes. When he flashes you a big grin —
as he does when he’s thinking about something funny that happened at school or
his latest high score on a favorite video game — you see those new adult teeth
that still look a bit too big for his mouth, like a young colt’s. His
fingernails have a tendency to be dirty, for the same reason the palms of his
hands are calloused: from swinging on monkey bars and climbing trees.

 

What you won’t notice
immediately is his disability. It took me years to notice it myself. When he
was born, I marveled at the tiny perfection of his body. Every finger and toe
was intact, every limb sound. His heartbeat was strong and regular; his piercing
cry let me know his lungs were in fine shape. He could see, hear and lift up
his head. He learned to sit up, crawl and walk perfectly on schedule. And I
breathed a sigh of relief at each milestone.

 

But if you look a bit more
closely, you start to notice a few things that seem a bit odd. When he races,
for example, he runs leaning forward, his body stiff and his arms straight out
behind him. And he may race away from you, frowning, when you smile and say hi.
(Later, he will confide in me that you are “a meanie” because you
said “the h-word,” as he calls the greeting “hi,” a social
nicety that continues to baffle him.) His golden skin and lips are marred in
places by little raw, bleeding patches where he has absent-mindedly,
compulsively picked his skin. And that beautiful grin? He can flash it if he’s
not thinking about it, but ask him to smile, as for a picture, and his fingers
go to the corners of his mouth, pushing them up and providing him feedback on
what his face is doing. Finally, those hard-earned callouses are the result of
hundreds of consecutive recess periods consisting entirely of silent, solo
swings on the monkey bars and of countless hours climbing trees outside our
house, where he can see the world while escaping the chaos of having to interact
with it.

 

Speaking was the first
milestone Austen didn’t hit on time. Speech came eventually, but haltingly,
very late and filled with echolalia (a tendency to repeat words and phrases
without reference to their meaning). Austen’s failure to speak when and how
other children did sent us to exam room after exam room, as various specialists
each worked backward from his behavior to the same diagnosis: autism.

 

Austen is not at all what
I imagined a child with special needs would look like. There are none of the
trappings I thought would come with disability: no wheelchair, no guide dog, no
cane. There’s no “I’m autistic” label on his forehead. Outwardly,
physically, (aside from — in his mother’s unbiased opinion — his stunning
good looks, of course) he’s unremarkable. His disability is hidden in the
mysterious quirks of his brain and nervous system and shows itself obliquely in
his unusual ways of doing, being and communicating. Those differences are the
reason that he climbs aboard a little yellow bus each day to make the trip to a
school that has a special ed classroom able to accommodate his needs and help
him learn to interact with the world in the ways it expects him to interact
with it.

 

And those can be
mysterious. “Why,” Austen will ask, “is it good manners to say
‘bye’ but rude to say ‘I’m hanging up the phone now?'” He has a point.
Don’t they mean about the same thing? Isn’t the second one actually more
precise? Other questions follow: Why can’t I sit on the floor of the classroom
instead of at my desk? Or why can I sometimes and sometimes not? How long is
the right amount of time to look in someone’s eyes? Why do people think it’s
sad that I enjoy doing things by myself?

 

I never thought of these
things before Austen. I not only never questioned, but never even noticed, all
the unspoken rules we live by; all the ones we’re supposed to be able to intuit
without asking (because asking would be rude or stupid). I see them now because
Austen’s disability lies precisely in his inability to intuit them. He has to
be explicitly told. His teachers and his family are his universal translators.
We have to tell him. And help explain to the world for him.

 

And Austen isn’t the only
one. With autism rates alone currently at around 1 in 100, chances are one of
the people you meet today will have autism or multiple sclerosis or ADHD or any
of a host of other invisible disabilities. They won’t look like disabilities.
They’ll look like being rude or obsessive or rigid or strange or lazy or too
slow or too fast. They’ll look like Austen sitting high up in a tree or
absently picking at his lip.

 

So, as Austen has
struggled to master the rules, I’ve been learning my own lessons from him.
About how my expectations can trip me up, blinding me to the uniqueness and

diversity of creation. Or how not everyone’s brain or body works like mine, even when they look
like mine. I’ve seen the beauty in that moment of reaching out to say hi, even
when a curly headed, bright-eyed boy unexpectedly runs away — frowning —
silent, solitary and swift as the wind. And I’ve watched the way love and
compassion can rush into the space he leaves behind.

 

Mary P Jones* is a married
mother of two: 9-year-old Austen*, who is autistic, and 7-year-old Janie*,who
is neurotypical. She blogs at A Room of Mama’s Own.

*All names are pseudonyms
used to protect the family’s privacy.