Treatment and early detection were the focus of the 5th Annual Conference on Autism at the University of the Virgin Islands’ St. Croix campus Friday. The event was jointly sponsored by the Virgin Islands Center for Excellence in Development Disablilities (VIUCEDD) and the Virgin Islands Autism Network (VIAN)
In the keynote address, Patricia Towle, Ph.D., a specialist in early childhood and neurodevelopmental disabilities at New York Medical College, briefed the students, medical providers, and parents of children with autism in attendance on the latest research into the syndrome. She said that while our understanding of autism is still limited, it has improved greatly over the last 10 years.
“There’s still a lot we don’t know, but we can’t say we know nothing anymore,” she said.
Recent studies by the federal Centers for Disease Control and Prevention have found that the rate of autism diagnosis is increasing. Today, 1 in 88 children are diagnosed with some form of the disorder. Autism is significantly more common in boys (1 in 54) than girls (1 in 252).
The root causes of the disorder are still being investigated, but Towle said that genetics seems to play a large role.
“I don’t mean genetics just like how you get your eye color,” she said. “Really complex genetics. There seems to be maybe even hundreds of genes that are involved.”
Autism is a mental disorder that impairs an individual’s communication, social, and repetitive action skills. Towle explained that autism is not a single disease with a single set of symptoms, but a whole range of disorders. The severity of autism varies widely from child to child, ranging from relatively minor cases to instances where individuals cannot speak or function on their own.
The presenters at the conference stressed that while there is no cure for autism, the quality of life for people with the disorder is improving thanks to therapies such as applied behavioral analysis (ABA).
ABA is a method by which positive reinforcement is used to promote social and communication skills in autistic children. Proponents of the therapy claim that through years of treatment some of the symptoms of autism can be overcome.
“With applied behavioral analysis, trust me, you can teach them,” said Stephanie Emelia Barnes, president of VIAN. “You can teach a person that has been told that they cannot speak how to speak.”
Barnes knows this from experience. Her own son was diagnosed with autism and was nonverbal for years. Using ABA therapy, he learned to speak and recently graduated from high school. Barnes says that now her biggest struggle with her son is typical teenage moodiness.
“I just told everybody that I paid a hell of a lot of money to have him talk, and now I want him to shut up,” she said with a laugh. “I say that to give hope to the parents, because it’s a very, very painful thing to watch your little boy not be able to express himself.”
Barnes’ biggest advice to parents who suspect their child may be autistic is to be proactive. The sooner a child is diagnosed and put into treatment, the more effect it will have on their life.
“If we catch them early, we can retrain those behaviors we know are prevalent in children with autism,” she said. “Early diagnosis is the key.”
According to Towle, it is ideal for children to be diagnosed by the age of three or earlier. She said that an informed doctor can usually make a diagnosis by the age of two. To learn more about the early signs of autism, visit the CDC website or www.autismspeaks.org.
Another major message at the conference is that parents of autistic children are not alone. Charles Beady Jr., associate director of VIUCEDD, encouraged parents to contact his organization to learn more about their rights and the programs in place to support them.
“Our reason for existing is to support individuals and families who have developmental disabilities so that they can live inclusive lives,” he said. “They have the right to live, love, work, be employed, and just enjoy society that the rest of us do.”