In the past twelve
years I have heard, “Autism? What’s that?” from more than a few people. And
I’ve patiently answered. After all, twelve years ago I had almost no idea what
autism is.
Originally, when asked,
I quoted a definition of autism that went something like, “Autism is a
neurological disorder that limits a person’s ability to communicate and learn
from their environment. A person with autism may have trouble with
communication and social skills, and they might engage in repetitive behaviors
and have limited interests.” Of course, if given the opportunity I would
expound on that definition significantly, because offering that general and
very broad definition never really painted a very clear picture of who my son
was and what his differences were.
Many, many times, I
probably left the impression with people that autism is a very big and scary
beast. Back then, that is what autism was to me.
When we first
encountered autism it seemed like a powerful villain in a dark movie. It lurked
in shadowy corners like a kidnapper who was holding my son hostage, just out of
my reach. Autism frightened me like nothing I had ever known. And my definition
of autism reflected that. Autism does not intimidate me now like it did back
then so I can define it just a little bit differently than I used to.
Ten years ago, autism
meant: discrete trials and flashcards, long team meetings, therapists in my
living room for hours at a time, and a second mortgage to pay for it all.
Autism was stereotypic
behaviors like toe walking, posturing, squealing, and my constant reminders of
“calm hands please.”
Autism meant drool bibs
and diapers long after peers outgrew them.
Autism was a love
affair with vacuum cleaners.
Autism meant memorizing
acronyms that everyone around me seemed to already understand without pausing
to decipher, always leaving me a sentence behind while I tried to keep up.
Autism meant learning a
whole new vocabulary and using words like perseverate and echolalia on a daily
basis.
Autism meant owning
every character from the Thomas series, so they could be lined up and
worshipped, but rarely played with appropriately.
Autism was staying
awake for hours at night to make sure Woody’s hat did not come off his head.
And autism meant if the crayon from the sacred Blue’s Clues notebook was
missing, we searched as long as it took to find it.
Autism turned bath time
into a painful battle and haircuts into torture.
Autism was locked doors
and the fear of wandering.
Autism meant, “Please.
Please. Just take a bite” and “He hasn’t pooped in days.”
Autism was transition
warnings, meltdowns, visual schedules, and routines without flexibility. Autism made me
hold my breath, always waiting for the other shoe to drop.
Autism meant anxiety
and so many fears. There was the fear of storms. And loud noises. And people in
costumes. And dogs. And bats (because there might be one somewhere out there
that would swoop down and flap in his hair). And police officers. And other
children.
Autism meant I was
constantly explaining behaviors and making excuses for the differences.
Autism meant that I
dreaded detour signs.
That was a lifetime
ago, but only yesterday. Somewhere along the journey, as my son has matured and
time has passed, how I see autism had changed, It has changed just a little in
some ways, but a lot in others.
Perhaps it is sort of
like Stockholm syndrome and I now identify with my son’s captor.
Perhaps it is because I
have just come to accept what is.
Perhaps it is because
all the early intervention helped to eliminate some of the hardest parts of
autism.
Perhaps autism has
evolved as my son has aged.
Perhaps it is because
autism was never really as scary as I thought it was in the first place.
For whatever reason(s) I
have grown somewhat complacent with autism.
I do not embrace autism. I do not even like autism. I just do not fear
autism anymore.
It was definitely a
gradual thing. It did not happen in one defining moment. It’s not that we have
slayed the proverbial beast that I perceived autism to be, or even that we have
tamed it. Autism is still with us. It still sometimes seems bigger than us. But
mostly it is in the background. We used to revolve around autism. It was at the
center of everything. But these days,
most days, it lives with us quietly.
These days autism means
IEP meetings that go well, and an advocate who is like family to us.
Thomas the train and
Blue’s Clues have been forgotten. Now, autism means shelves and shelves
overflowing with movies and obsessions about movie personalities.
Autism means Legos.
Autism means that we
only get haircuts on Thursdays but they are not traumatic for us.
Autism means a peanut
butter sandwich, chips and 3 cookies presented in the same way every day for
lunch.
Autism means cheese
pizza, lots and lots of cheese pizza.
Autism is literal
thinking and explaining the punch line of a joke.
Autism is funny
misunderstandings.
Autism means peers who
are willing to help and educators who genuinely care about my son.
Perhaps in years to
come I will feel differently. It could be that as my son’s peers begin to
drive, go off to college, and wed, my vision of the ugly monster will be
resurrected. I can imagine as I get older and my son needs a sibling to step
into his life as his caregiver, that I will redefine autism once again. But for
now, these days, autism is just a quiet part of who our family is.
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