Ten Years of Autism: What I’ve Learned Riding the Autism Spectrum, Part Two
Saturday, September 24, 2011
the second post in this series! I’m marking the ten-year anniversary of my
son’s autism by comparing what I learned in these past ten years to that which is discussed in the classic book, Ten Things Every Child With Autism Wishes
Chapter Two: My Sensory Perceptions
This means that the
ordinary sights, sounds, smells, tastes and touches of every day that you may
not even notice can be downright painful for me. The very environment in which
I have to live often seems hostile. I may appear withdrawn or belligerent to
you but I am really just trying to defend myself.
~ Ellen Notnohm
easily discernable, even at an early age, that certain sounds, smells, touches,
etc., had either the power to set Billy off -- or to shut him down. Haircuts make him scream. The whistling of a
tea kettle sends him running out of the room. Unfamiliar foods make him gag. His
mood and behavior are often unsettled long after the offending sensation has
opinion it is imperative that we parents of children on The Spectrum understand
that sensory hypersensitivity will result in “acting out” behavior. It is not, admittedly, the easiest concept to
grasp – or to integrate into our parenting. We are responsible for setting limits and for
disciplining our children. We are charged with teaching our children to follow
rules so they can function in society. Actions have consequences and all children need to learn that.
What I still
struggle with – especially now that my son is an adolescent – is how to tell the
difference between the typical behaviors of a teenager testing limits and those
that are completely beyond his control because of sensory irritation.
me of something that Temple Grandin, a well-known author and speaker who has
Asperger Syndrome, has often been quoted as saying: “You can’t punish a child
who is acting out because of sensory overload.
I posed the
question to Billy’s psychiatrist while my 13 year-old son sat there, pretending
to be a dragon breathing fire on me. (He obviously didn’t want to be there.) “Is he doing this as a form of normal teenage
rebellion or is he doing this because of his autism?” I asked. The doctor had no simple answer.
“He’s doing this because he’s a teenager who has autism.”
I guess the
best advice I can give to both myself and to you is to:
reasonable limits -- without them it will be impossible for a child to navigate
the world. (Don’t expect too much from
your child; but don’t expect too little.)
consequences known and follow through with them. (If you keep screaming we will
leave the store – without the thing you are screaming for.)
alternative, more acceptable behaviors that will help to diffuse tension. (Don’t
rip the wallpaper off the wall; tear these newspapers instead.)
4) Pick your
battles. (Pretending you’re a fire-breathing
dragon toasting one’s mother like a marshmallow is one thing -- hitting and
biting her is another.)
* * * * * *
Billy and I will be traveling to Walt Disney World without my husband and
daughter, so as a result I’ll be solo-parenting Billy for the week. Parenting a
child who has ASD is a challenging enough role for two parents let alone one –
and it will be even more so for me because we’ll be in a highly stimulating
environment. Let’s face it; a day in a
theme park can be over-stimulating for anyone.
I anticipate that there will be many times I will miss having my steadfast husband there
to share the parenting duties.
One of the
interventions I’m planning in the event that Billy becomes overwhelmed and
begins acting out is the use of Social Stories.
first defined Social Stories early in 1991.
A Social Story is a
short story – defined by specific characteristics – that describes a situation,
concept, or social skill using a format that is meaningful for people with ASD.
(*Visual as opposed
to verbal.) Social Stories are often
written in response to a troubling situation, in an effort to provide a person
with ASD with the social information he may be lacking. The result is often… an
improvement in the response of the person with ASD.
Social Stories a lot more when Billy was younger and less verbal. In
fact, back in 2006 I submitted a tip involving the use of Social Stories and
kids with ASD and it ended up being included in the book PassPorter’s Open Mouse for Walt Disney World and the Disney Cruise
Lineby Deb Wills and Debra Martin Koma.
working with Billy’s behaviorist to develop these social stories. (The school
he attends uses a program called Board Maker, which I don't have.) I will be sure to post them here. In the
meantime, my good friend Amy, who has two boys on the spectrum, has
graciously agreed to share pictures of just a few of the social story cards she made
for her upcoming Disney trip:
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