Alarming increase in autism spurs need for awareness

IT’S THE phone call you don’t want to get, from the person you don’t like to hear from.

Perched in front of my living room window for 80 minutes, I anxiously waited for Madison’s bus to arrive. The phone interrupted my worries. The assistant principal, whom I’ve known for years, identified herself by first and last name as well as her position. I knew there was trouble.

“Is Madison home yet?”

“No,” I stammered. “Is everything all right?”

“There’s been an accident,” she continued. “All the children are fine, but there is a significant delay. She should be home soon,” she assured me.

A car had skidded into the back of the stopped bus. Baltimore County transportation officials inspected the site. The children appeared OK, but I was encouraged to “check Madison out” and report any problems.

That’s easier said than done with my 9-year-old daughter, Madison. She is part of Baltimore County’s special-needs population — specifically, the recently reported 640 percent increase since 1993 in the number of people suffering from the neurological disorder that impairs communication, autism.

As a seasoned student in the Autism Outreach Program, Madison rides a bus with other special-needs children, all with varying degrees of communication. I tried to envision the accident and the impact of the collision. With our children’s limited use of language, we parents of children with autism become astute observers of behavior. Recently, Madison’s persistent hair twirling at her left temple signaled an ear infection. Cryptic requests for “Pressure, please,” on her face often indicate a headache or sinus problems.

After a jolt from behind, how would I know if she is OK?

Children with autism are often sticklers for structure. Routines, punctuated with picture systems, as well as verbal and nonverbal cues, organize their world into manageable chunks of activities. Changes in daily schedules can lead to upsets, even violent behavior.

The bus was now nearly two hours late. I could only hope this major disruption of routine would not set off a pandemonium too great for the driver and assistant to handle.

I waited. I prayed.

After a few minutes, that seemed like an eternity, I spied the top of the bus rounding the corner of our neighborhood.

“The bus is here!” I shouted. My 13-year-old daughter threw on her coat and ran out to greet her sister. Madison bounded down the steps singing, “Old MacDonald Had a Farm” at the top of her lungs. The driver slumped over the steering wheel, crossing his hands to cushion his weary head. I could not begin to imagine the day he’d had.

Madison scurried into the house, hanging up her coat and backpack before plunking down at the counter for her after-school snack.

“I want milk, please,” she politely stated, using one of her scripted functional requests. Children with autism need to be taught the most basic language. She learned this sentence after hours of repeated drills, both at home and at school.

Unfortunately, her vocabulary does not include the words, “I hurt.”

That long afternoon finally melted into the evening, as did my fears of Madison’s invisible injuries. I only wish my fears for her future could be so easily assuaged. The first step is to care and prepare for this lifelong disability by finding a forum to speak for the hurts of those who can’t.

That’s why I joined former Oriole B.J. Surhoff and other parents of children with autism as we unmasked our hurt and found our voice for these children at a recent kick-off meeting for the congressional Autism Caucus in Washington. Addressing the alarming increase in incidence, this group will provide a forum for autism issues culminating with a nationwide rally planned for today, Autism Awareness Day.

This article was originally published in The Baltimore Sun.