THE TRUTH ABOUT
T
he weather was hot and sticky and I was begging my daughters to get dressed and
out the door. My frustration level was rising as the volume of their complaints over being rushed increased. Heading outside, I turned to my nine-year-old and said, “You brushed your teeth, right?” She gave me a look and then ran up the stairs to brush her teeth while I stood seething.
After dropping them off with my neighbor, I drove to my meeting at a nondescript offi ce building off Route 309. The fi rst thing I noticed was the roughly 12-foot high fence surrounding the place. Entering the building, I immediately felt a sense of calmness, and the anxiety of the mad rush to get out of the house faded amidst the soothing colors and décor inside. The build- ing I was visiting is home to ARCH--Autism Resource Community Hub of Lehigh Valley- -which provides services for autistic children and their families. Three mothers graciously agreed to meet me at ARCH and provide some insight to what it’s like raising a child with autism. As we sat around a conference table, Kate*, Jane* and Stacy* described their routines and I sheepishly contrasted their daily schedules with what I considered to be a ”stressful” morn-
50 Early Fall 2011
ing with my own children. Every time a parent takes an autistic child out of the comfort of their own home, the challenges are huge (hence the 12-foot-high fence at ARCH; autistic children are often a fl ight risk). A simple picnic invitation can be complicated with autistic children who have limited diets, no fear of running into traf- fi c, limited social skills and may react strongly to things like candles or noise. And while autism varies from child to child, they all described their experiences as lessons in patience.
According to a study recently published in the journal Pediatrics, one in six American chil- dren has a developmental disability including autism, learning disorders or ADHD. The study researchers saw a 15 percent increase over near- ly 10 years equaling an additional 1.8 million children with developmental disorders in this country. The reason for the increase is debatable, but the study authors attribute factors such as the increasing age that women are having children and genetics.
Another reason for the increase may be the lack of an objective diagnostic test. “I wish that au- tism turned your belly button purple,” says Kar- en E. Senft, M.D., a developmental behavioral pediatrician at Good Shepherd in Allentown.
“When we diagnose, it’s based on informed clinical opinion.” According to Dr. Senft, they start with a family history, discuss the parent’s concerns and conduct an extensive developmen- tal profi le examining the child’s social skills, eye contact, interaction with siblings, what they play with, what they eat, how they sleep and their self-help skills. The goal is to diagnose as early as possible. “The earlier, the better,” says Dr. Senft. “You want to start interventions as young as possible, working on core defi cits such as language, social interaction, and toy play for roughly 20 hours a week.”
With the focus on early interventions, parents with developmentally delayed babies are in a race against the clock to get a diagnosis and start treatment. “It’s going to take years to teach my child the life skills he’ll need once he’s out of the system so it was essential that we started ear- ly,” says Kate. But early diagnosis helps in other ways as well. “When you bring your child to the doctor you already know something is wrong,” says Kate. “Once you have the diagnosis, you can connect to services and support groups.”
All three parents who spoke with me said they knew something was wrong with their children early on. But surprisingly, Jane and Stacy were
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