According to a new research, the rate of autism has climbed in New Jersey and across the nation while a significant number of children with autism are not being diagnosed early enough to get the proper treatment.
The rate of missed, delayed or inaccurate diagnoses varied from state to state. Data from 11 states in the autism-monitoring network of the federal Centers for Disease Control (CDC) and Prevention shows that in New Jersey, one in five children with autism was undiagnosed.
One in 59 children nationally, and one in 34 in New Jersey, has autism, according to the most recent data, from 2014. The rate of children with autism has increased more than 2½ times in 15 years, according to the CDC.
“What we know to be the prevalence of autism is more likely the tip of the iceberg,” said Dr. Arun Karpur of Autism Speaks, a national autism advocacy and research organization, commenting on the new research. “The data are providing us a warning that many more children with autism spectrum disorder remain undiagnosed in this country.”
You can read: Study: New Jersey could be the state with the highest rates of autism
The research, by Wiggins, CDC scientists and Walter Zahorodny of the Rutgers New Jersey Medical School, among others, was published in December in the journal Autism Research.
“We were surprised at the number of children that did not have a clinical diagnosis,” Wiggins said.
The implications of this delay can have serious consequences for those undiagnosed children.
“Having a diagnosis might prompt delivery of services that really maximize the developmental potential of the child,” said Lisa Wiggins of the CDC, lead author of the study. It “could result in less intensive treatment over time.”
An official diagnosis can make a difference in whether autistic children receive the education services they need. It can also be used to justify the therapies mandated by some states, like New Jersey, for insurance coverage. And it can facilitate the communication between parents and health professionals about their child.
Suzanne Buchanan, psychologist and executive director of Autism New Jersey said that children who are treated early with a form of treatment called applied behavior analysis, 30 percent of them “lose their diagnosis” and can be mainstreamed in school
Nadine Wright-Arbubakrr, founder of Nassan’s Place, a non-profit for children with autism in the Newark area, considers education as a necessary element for recognizing the characteristics of autism and for working on diagnosis and treatment.
Single-parent and lower-income families often lack the time and resources to recognize the signs of autism and advocate for their children. “The parents are not as educated about it as they should be; they don’t press the school district to do what they need to do,” Wright-Arbubakrr said. “Put that on top of the school district not recognizing it,” and the children don’t get the help they need.