VIDEO - Alexa presents her autism awareness message
Rob Gilsdorf of Middletown lost friends when his son, Andrew, developed autism spectrum disorder.
“Once Andrew’s disability manifested itself, [some friends] drifted away,” Gilsdorf said. “But then the friends that remained were absolutely true friends and then we met an incredibly wonderful group of people associated with the disability who have become more than friends, but family, too.”
Gilsdorf is the past president of Autism Delaware, now on the board of directors.
During Autism Awareness Month in April, the nonprofit is hosting benefit walks to raise money and spread the word about support services, networking and social events for affected families.
Gilsdorf said being a parent of a child with the disorder can be very isolating.
“Your family structure doesn’t fit into the norm … autistic children can be a handful to manage in public and at social gatherings,” Gilsdorf said.
Autism often manifests itself, he said, “when the child becomes overwhelmed by a stimulus or stimuli like noise or an activity. Social interactions have to be carefully managed. The child can get very upset and act out.”
Gilsdorf said the biggest misconception about autism is that people affected by the disorder are “tremendously different.”
“In truth, they’re more like us than different. [They have] a desire to succeed, desire to please others, to enjoy family, friends and life adventures. They are pretty normal. They’re just trapped inside this disability,” he said.
What is autism?
Autism spectrum disorder, a developmental disability, includes impairment in social interaction and social communication.
Individuals with ASD exhibit repetitive patterns of behavior or interest that limit everyday functioning, according to Autism Delaware’s website.
An intellectual or language impairment is possible. Symptoms first appear in early childhood.
On the job with autism
Gilsdorf’s son, Andrew, was diagnosed when he was three or four years old. Today he’s 28 and working at United Medical.
After graduating from the Delaware Autism Program in 2011, he worked at ING Direct, where he indexed mortgages for four years. Then he worked at SC Associates, scanning tax and accounting documents. Now he has a job at United Medical, where he records payments.
In Middletown, he lives with a residential guardian and supports himself with his paycheck, Social Security disability and other social services benefits.
And he likes to see movies and remembers every movie he’s ever seen. He remembers the length exactly, and the actors’ and directors’ names.
“We call him the movie man,” Gilsdorf said. “He goes to Westown Movies every week.”
New way to communicate
Daren and Nakia Gayle of Townsend have a son with autism. Daren Jr., 5, nicknamed D.J. He can’t communicate well verbally, but he can communicate using an iPad with an app where he can press flashcards with pictures to make the iPad talk.
“His cognitive skills are typical,” Nakia Gayle said. “He doesn’t speak, but he understands everything you say.”
He’s in kindergarten at Spring Meadow Early Childhood Center in what’s called an inclusive class with students of all abilities.
“He learns well watching other kids,” Daren Gayle said. “We want him to embrace the social aspects of school.”
At home, D.J. has chores. He puts his dirty clothes in the hamper and he moves clothes from the washing machine to the dryer. He helps load the dishwasher.
“We don’t put any limits on D.J.,” his mother said. “Our motto is he may have to work a little harder, but he will eventually be able to do it.”
Daren Gayle said the biggest misconception with children with ASD is they aren’t smart or can’t learn.
“They’re just as smart as typical children,” he said. “They may just learn differently.”
The couple said while people’s attitudes about autism have improved over the years, more services are needed. There aren’t enough applied behavioral analysis therapists who handle what the child needs, and there’s a waiting list for such professionals. They said emergency responders should know what to look for when it comes to children with ASD.
Autism numbers rising
One in 68 children in the United States has ASD, up from one in 150 in 2002, and this school year, 2,109 students statewide have the classification, up from 1,660 in the 2015-16 school year, according to Autism Delaware.
And those numbers don’t include children or adults outside the special-education system.
The reason for the increase isn’t clear.
Teresa Avery, Autism Delaware executive director, said the discussion centers on whether there are more children with autism or if professionals are getting better at diagnosis.
“There’s a lot of research being done as to why the increase,” Avery said. “It’s a global phenomenon. There’s an increase in Australia, the United Kingdom and South Korea, to name a few”.
The autism stigma has lessened over the years, but more services are needed, she said.
Alison May, spokeswoman for the state Department of Education, said public schools statewide have different options in how they handle special education students.
Children with the disorder could be placed in inclusive classrooms or they could be sent to special schools somewhere in Delaware.
“Special education students have [Individualized Education Programs], which basically outline services and goals to meet each child’s individual need,” May wrote in an email. “The goal is always the least restrictive environment. So, while some students with autism and other disabilities are taught in their own classrooms, others are in inclusive classrooms and given the supports needed in those classrooms.”
Services for people and families
Autism Delaware has offices statewide and offers many services for those who have ASD and their families.
The organization has family navigation services, where people or families can call and ask questions, Avery said.
Its Productive Opportunities for Work and Recreation program connects those with autism with businesses.
“We can connect people with autism with jobs in the community and we support their success,” Avery said.
The organization has coffee hours throughout the state, giving parents a chance to talk to each other about their needs. And there’s family recreation like bowling, roller skating and trampoline bounce outings.
For more information about autism or Autism Delaware programs, visit the group’s website at AutismDelaware.org, call the Newark office, 302-224-6020, or the Lewes office, 302-644-3410.