Parents and professionals at the seventh annual Autism Conference – held Monday on St. Thomas and Wednesday on St. Croix – learned that the incidence of autism spectrum disorder has increased by almost 30 percent since last reported two years ago.
In 2012, the U.S. Centers for Disease Control reported one in 88 children was diagnosed with ASD, but the latest research finds that one in 68 is affected with the disorder.
The cause is unknown, but the complex brain condition affects learning, behavior, socialization, communication and motor skills. So far, there is no cure.
The almost 30 percent increase in ASD is disturbing, said Dr. Yegin Habtes, executive director of the V.I. University Center for Excellence in Developmental Disabilities. VIUCEDD and the V.I. Autism Network sponsored the conference.
On the other hand, children are being diagnosed earlier and can get help earlier, Habtes added. The increase in early detection may account for some of the increase in the disorder’s occurrence.
One of the early detection tools is a child’s inability to make direct eye contact, according to Habtes. Other symptoms span a wide range and can include behavior problems, repetitive movements, developmental delays, or the lack of verbal and motor skills.
According to Habtes, there are 16,000 people living with disabilities in the territory, but the number with autism is unknown, because many parents don’t know or don’t report the disorder.
“If they do not declare, we can’t do the recommended accommodations,” Habtes added.
As a sample of the potential number, Stephanie Barnes, the ADA coordinator for the territory and the founder of the V.I. Autism Network, said about 25 parents have called her this month – National Autism Month – and said their children have symptoms but have never been tested.
More than 75 people – educators, health care providers and parents – registered for the St. Croix conference and Habtes said more than 100 attended the St. Thomas event, including a group from Tortola, British Virgin Islands.
Two guest speakers presented information about current practices for working with children and adults with autism.
Dr. Ann Cox, a scientist at the Frank Porter Graham Child Development Institute at the University of North Carolina and director of the National Professional Development Center on Autism Spectrum Disorders, talked about best practices research to support and promote learning for individuals with ASD.
The goal of the NPDC research was to help develop quality programs by observing classrooms and teaching situations, interviewing parents, children and teachers, and using previous research.
“We can’t always see everything through observations. We can’t always see everything through interviews and we can’t always see everything through data research,” Cox said.
Some of the important tools found to help teach life skills included having one teacher teach one student appropriate behavior or skills, physical exercise, parental reinforcement and peer interaction to learn new behaviors, communication and social skills.
“Research shows people with disabilities learn better with their peers,” Habtes agreed.
Dr. Somer Bishop, a clinical psychologist at the Center for Autism and the Developing Brain and assistant psychology professor in psychiatry at Weill Cornell Medical College, devoted her presentation to the little research there is about programs for adults with autism.
Difficulties for young adults include a lack of infrastructure once they leave school and few recreational programs. Another problem is that symptoms can change during adolescence and most live at home which can lead to another symptom – depression.
According to Bishop, autistic individuals have trouble finding work and developing careers. Research shows that behavior problems decrease when the person is employed.
“We need an economist to show it is more efficient to have adults with autism working than receiving disability,” Bishop said.
Because there is “extreme variability” in the symptoms, language ability and I.Q. of individuals with ASD, diagnosis is difficult, according to Bishop. The medical history and family also play an important part in diagnosis and treatment of the disorder.
“So when we’re thinking about interventions for any age, we have to think about the individual not just pre-packaged programs,” Bishop said.
Dawn O’Bryan, a parent in the audience, agreed with Bishop about the lack of services for young people, especially in the territory. Her son recently returned from high school on the mainland and it has been difficult finding educational and employment opportunities for him, she said. He spends a few hours a day at a Human Services program, Transition Connection, at the Herbert Grigg Home and whenever possible uses the services of Dr. Lindsey Wagner’s Island Therapies, where there are support groups for children and parents as well as an occupational therapist, a counselor and a social worker.
“The hardest thing to get a person with disabilities and a nondriver is a nondriver ID,” O’Bryan said. After exploring possibilities through the Motor Vehicles Department, she finally registered her son to vote.
“Now they’ll be calling him up to serve on juries,” O’Bryan said.
More remedial services for young adults are needed and a place, such as the Boys and Girls Clubs, where “they can be safe,” O’Bryan said. She hopes her son will be eligible for a new program through the V.I. Labor Department.
Barnes also spoke to the group about her son’s ASD diagnosis at the age of 3. Family and physicians advised her to institutionalize him, but she raised and educated him despite the breakup of her marriage.
Barnes’s son now attends college classes in New York and has become an artist with work selling for as much as $2,500.
