The Truth About Autism
The 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 office building off Route 309. The first 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 building 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” morning 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 flight risk). A simple picnic invitation can be complicated with autistic children who have limited diets, no fear of running into traffic, 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 children has a developmental disability including autism, learning disorders or ADHD. The study researchers saw a 15 percent increase over nearly 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 autism turned your belly button purple,” says Karen 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 developmental profile 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 deficits 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 early,” 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 both told by their pediatrician that their kids were fine. “There is a qualitative nature to the diagnosis which leaves it in the eyes of the evaluator,” explains Margie DeRenzis, Supervisor of Special Education for Elementary Autistic Support Programs at the Colonial IU 20. And while it’s a mandatory part of training for pediatricians, the parents I spoke with didn’t receive a diagnosis until visiting a neurologist or developmental pediatrician. “The best advice I can give is to get a second opinion,” says Jane. “As a parent, you can’t afford to sit by and do nothing because time is so important with autism.”
Bypassing the long wait for a diagnosis may require creative strategies such as traveling out of town, utilizing a specialized social worker at places like ARCH, or calling your county to request an exam. “The county will send someone to assess your child to see if they fit the diagnosis,” says DeRenzis. “You would still have to get a pediatrician’s diagnosis, but if the child has a significant disability the county will provide early intervention services.”
Interventions for autistic children involve strategies to help develop language and social skills. “We work on getting them engaged, and intervene with their rituals,” explains DeRenzis. “For example, if a kid needs to have all the doors closed, the only intervention that has been found to be effective is applied behavior analysis–you would leave the doors open and reinforce the child with something they like, such as a snack or toy.”
The mothers that I met at ARCH accept that they have a lifetime of challenges ahead of them. Raising a child with autism forces you to learn how to navigate the system to get what you need for your child, spend time and money for therapy and interventions, learn strategies to help the child navigate the world, and the patience to help siblings and other family members co-exist with their unique behaviors. “Families with autistic children are some of the most flexible and laid back people you’ll meet,” says Stacy. “I know I am a better person for it.”
*Names have been changed to respect privacy.
Sources:
ARCH of the Lehigh Valley
1347 Hausman Road, Allentown
610-573-2500
Good Shepherd Pediatrics Program
850 South Fifth Street, Allentown
610-776-3578
Colonial Intermediate Unit 20
6 Danforth Drive, Easton
610-252-5550
