By Laura Krueger Crawford
If you have a child with autism,
which I do, and if you troll the Internet for information, which
I have done, you will come across a certain inspirational analogy.
It goes like this: Imagine that you are planning a trip to Italy.
You read all the latest travel books, you consult with friends about
what to pack, and you develop an elaborate itinerary for your glorious
trip. The day arrives. You board the plane and settle in with your
in-flight magazine, dreaming of trattorias, gondola rides and gelato.
However, when the plane lands you discover, much to your surprise,
you are not in Italy - you are in Holland.
You are greatly dismayed at this abrupt and unexpected
change in plans. You rant and rave to the travel agency, but it
does no good. You are stuck. After a while, you tire of fighting
and begin to look at what Holland has to offer. You notice the beautiful
tulips, the kindly people in wooden shoes, the French fries and
mayonnaise, and you think, “This isn't exactly what I planned, but
it’s not so bad. It’s just different.” Having a child with autism
is supposed to be like this - not any worse than having a typical
child - just different.
When I read that, my son was almost three, completely
non-verbal and was hitting me over a hundred times a day. While
I appreciated the intention of the story, I couldn't help but think,
“Are they kidding? We are not in some peaceful countryside dotted
with windmills. We are in a country under siege - dodging bombs,
trying to board overloaded helicopters, bribing officials - all
the while thinking, “What happened to our beautiful life?”
That was five years ago. My son is now eight and
though we have come to accept that he will always have autism, we
no longer feel like citizens of a battle torn nation. With the help
of countless dedicated therapists and teachers, biological interventions,
and an enormously supportive family, my son has become a fun-loving,
affectionate boy with many endearing qualities and skills. In the
process we've created… well… our own country, with its own unique
traditions and customs.
It’s not a war zone, but it’s still not Holland.
Let’s call it Schmolland.
In Schmolland, it is perfectly customary to lick
walls, rub cold pieces of metal across your mouth and line up all
your toys end to end. You can show affection by giving a “pointy
chin.” A “pointy chin” is when you act like you are going to hug
someone and just when you are really close, you jam your chin into
the other person’s shoulder. For the person giving the “pointy chin”
this feels really good, for the receiver not so much – but you get
used to it. For citizens of Schmolland, it is quite normal to repeat
lines from videos to express emotion.
If you are sad, you can look downcast and say
“Oh Pongo.” When mad or anxious, you might shout, “Snow can’t stop
me!” or “Duchess, kittens, come on!” Sometimes, “And now our feature
presentation” says it all. In Schmolland, there's not a lot to do,
so our citizens find amusement wherever they can. Bouncing on the
couch for hours, methodically pulling feathers out of down pillows,
and laughing hysterically in bed at 4:00am, are all traditional
The hard part about living in our country is dealing with people
from other countries. We try to assimilate ourselves and mimic their
customs, but we argent always successful. It’s perfectly understandable
that an 8-year-old boy from Schmolland would steal a train from
a toddler at the Thomas the Tank Engine Train Table at Barnes and
Noble. But this is clearly not understandable or acceptable in other
countries, and so we must drag our 8 year old out of the store kicking
and screaming while all the customers look on with stark, pitying
But we ignore these looks and focus on the exit
sign because we are a proud people. Where we live, it is not surprising
when an 8-year-old boy reaches for the fleshy part of a woman’s
upper torso and says, “Do we touch boodoo?” We simply say, “No we
don't touch boodoo” and go on about our business. It’s a bit more
startling in other countries, however, and can cause all sorts of
cross-cultural misunderstandings. And, though most foreigners can
get a drop of water on their pants and still carry on, this is intolerable
to certain citizens in Schmolland who insist that the pants must
come off no matter where they are, and regardless of whether another
pair of pants are present.
Other families who are affected by autism are
familiar and comforting to us, yet are still separate entities.
Together we make up a federation of countries, kind of like Scandinavia.
Like a person from Denmark talking with a person from Norway, (or
in our case someone from Schmenmark talking with someone from Schmorway),
we share enough similarities in our language and customs to understand
each other, but conversations inevitably highlight the diversity
of our traditions.
“Oh your child is a runner? Mine won’t go to
the bathroom without asking permission.” “My child eats paper. Yesterday
he ate a whole video box.” “My daughter only eats 4 foods, all of
them white.” “My son wants to blow on everyone.” “My son can’t stand
to hear the word no. We can’t use any negatives at all in our house.”
“We finally had to lock up the VCR because my son was obsessed with
the rewind button.”
There is one thing we all agree on: we are a growing
10 years ago, 1 in 10,000 children had autism.
Today the rate is approximately 1 in 250.
Something is dreadfully wrong. Though the causes
of the increase are still being hotly debated, a number of parents
and professionals believe genetic pre-disposition has collided with
too many environment insults -- toxins, chemicals, antibiotics,
vaccines -- to create immunological chaos in the nervous systems
of developing children. One medical journalist speculated that these
children are like the proverbial “canary in the coal mine” here
to alert us to the growing dangers in our environment. While this
is certainly not a view shared by all in the autism community, it
feels true to me.
I hope that researchers discover the magic bullet
we all so desperately crave. And I will never stop investigating
new treatments and therapies that might help my son. But more and
more my priorities are shifting from what “could be” to “what is.”
I look around at this country my family has created, with all its
unique customs, and it feels like home. For us, any time spent “nation-building”
is time well spent.
By Laura Krueger Crawford
~Used with permission of the author~
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