Finding hope for children with autism

By Kim Walter
The Northern Virginia Daily

Betsy Shanley, left, and her husband Jim sit with their son Phillip, 7, while he reads inside the living room of their home in Front Royal. Phillip has autism. Rich Cooley/Daily

Phillip Shanley is like any other child. He likes to play, has a wild imagination and at times wants what he can’t have. But unlike other 7-year-olds, he has a more difficult time communicating his emotions.

His parents, Jim and Betsy Shanley of Front Royal, noticed that he struggled to play with other children – including his eight other siblings. Mrs. Shanley said “he just couldn’t fit in” no matter how much he tried.

“It was heart wrenching,” she said.

In between age 5 and 6, Phillip was diagnosed with autism. His parents have had to embrace change to help their son, but over the past year of his working with therapists and special teachers at his elementary school, they say getting him help was “the right thing to do.”

April is Autism Awareness Month, and it seems to come at a good time. In late March, the Centers for Disease Control and Prevention released a startling update on the “epidemic” of autism, outlining just how many children in America are impacted.

Shamsi Sadeghzadeh, director of outreach services at Grafton Integrated Health Network in Winchester, has been with the network for the past 25 years. Her background was in counseling, but she said she was offered an opportunity to work with children with autism.

“I had just graduated, I had a masters,” she said, sitting in the Winchester office recently. “But I asked, ‘What is autism?’ … I had never heard of it.”

At the time, Sadeghzadeh said she was told autism was rare, only occurring in one out of every 10,000 children. However, the CDC’s latest report updated that statistic to one in every 50 childrend.

Just like 25 years ago, she said people still ask the question “Why?,” wanting to know the reason why their child had been placed in the autistic spectrum. She said she has no answer. The affliction is a neurological disorder, causing a child’s brain to work differently than that of their peers. The result can range from a few to severe symptoms displayed in a child’s social and intellectual abilities.

Sadeghzadeh said not one child with autism is exactly alike another, and that is part of the problem in finding a cause. Another question yet to find an answer to is why the number of children diagnosed has increased so dramatically.

While there are some roadblocks in getting to the root of the problem, Sadeghzadeh said she is encouraged by recent findings in treatment and behavior analysis.

“We do know that there is so much that can be done, and it is proven effective,” she said.

Babies can start displaying some “red flags” that could lead to a diagnosis as early as 6 months, according to Sadeghzadeh. From birth to age 7 is the opportune time for diagnosis and early intervention, she said.

In Virginia, the average age of diagnosis is 4 years old, which to Sadeghzadeh means “many opportunities and precious time is being missed.”

“The earlier the identification, the better the outcome for all involved,” she added.

Grafton offers clinic services for children with autism at a number of its facilities, and last year in-home services were added to the list of offerings. Sadeghzadeh said the ability to go to a child’s home and not only work with them, but in front of the parent, has been priceless.

In looking for early identifiers, Sadeghzadeh said parents might start to notice a lack of their child’s ability to engage with, observe and then imitate the things around them. Small children might lack the desire for their mother’s touch, or may not respond when their name is called out.

Sadeghzadeh said another red flag is if a child doesn’t invite a parent or other person to participate in an activity or emotion with them. For instance, a “typical” child may see something that makes them smile, and then point at it, and look to someone close by, inviting them into the experience. The same might not hold true for a child with autism.

“For as many people that are on the spectrum, there are probably that many symptoms,” she said. “When you meet a person or child with autism, that’s just it. You’ve only met one.”

She said often parents struggle with knowing exactly how to react to their child’s symptoms, whether it be biting, screaming or a variety of other things. Some children may struggle with social interaction, but excel in academics, while others will have the opposite issue.

Sadeghzadeh said it is not important how the child expresses his emotions, but why. She said it is crucial to understand what need is not being met in the child.

“If you only deal with the action, you are not fixing anything,” she said. “Our number one goal is not necessarily a cure, but to increase independence and quality of life for both the child and parents.”

The Shanleys decided to some research when they noticed their child not fitting in. They discovered that there was no time to waste given his age. They said they learned that Phillip might benefit most from public school, which was a huge change for the family since they had home-schooled all of their other children.

“Well, it was scary for him, of course,” Mrs. Shanley said. “But I was terrified to hand over my son to someone I didn’t know, in a place that I wasn’t familiar with.”

But the parents now agree that the benefits are very real.

Upon entering elementary school in Warren County, Phillip was testing below the kindergarten level. However, months later at the end of the school year, he was hitting the benchmarks. His teacher even suggested that he be placed in a standard first grade class.

Other students apparently don’t even notice that Phillip is a little different, since his social skills have improved greatly. Through in-home services, Phillip is observed while he plays with friends and family so that his specific needs can be met.

His therapist works a lot with his imagination, helping him to bridge the gap between fantasy and reality. He also looks at pictures of certain situations that might trigger anxiety so that he can begin to deal with those emotions – and truly understand them.

Sadeghzadeh said that every child wants to learn and succeed. “A child with autism is no different. If a child can’t swim, you teach, right? So if a child doesn’t know how to behave and react, our responsibility is to teach.”

Jim Shanley said caring for Phillip has its ups and downs.

“With him, we take two steps forward, but then take another back,” he said, sitting in the family’s living room as his son played. “But we know in general, we’re moving in the right direction. His lows are a bit more severe than another kid’s, but then his progress is so very rewarding.”

The couple admitted they struggled with the decision to tell their story. They strive not to label their son as “autistic” – they won’t be hanging a declaration of some kind on their front door concerning Phillip anytime soon. However, they say they hope others can learn that there is hope.

“This is how we dealt with it, and it worked,” Shanley said. “But we’ll keep working; it doesn’t stop after age seven. I see Phillip having a very normal adult life. If anything, it will be an extraordinary one.”

The Shanleys agreed with Sadeghzadeh in that there is no time like the present to get help.

Sadeghzadeh said the “days of ‘we’ll just wait and see’ are over. The time to move forward is now.”

For more information on autism services, or other resources in the community, contact Grafton at 888-955-5205 or visit grafton.org.

Contact staff writer Kim Walter at 540-465-5137 ext. 191, or kwalter@nvdaily.com