by Dalton Cox and Matthew Krause
One in 68 people in the United States have been diagnosed with an autism spectrum disorder (ASD). In North Carolina, the ratio is higher — one in of 58, and recent data suggest the prevalence of ASD has risen in recent years.
A March 2014 study by the Centers for Disease Control and Prevention surveyed 8-year-olds across North Carolina. Currently, more than 65,000 North Carolinians have an autism spectrum disorder.
“That is a number, but that doesn’t tell the true story,” said David Laxton, director of communications for the Autism Society of North Carolina. “That’s about prevalence. That means one in 58 kids in the counties that were sampled would meet the criteria for a diagnosis of autism.”
The autism spectrum encompasses a broad range of brain development disorders, characterized by social difficulties and restricted patterns of behavior.
“No two people are alike, and you have a wide range of levels of independence, functioning, strengths and weaknesses within the individuals who have the diagnosis,” Laxton said.
Patients might also experience body rocking, lack of verbal communication and aggression.
“On the other end of the spectrum you may have somebody who is out in the workforce, living on their own and driving,” Laxton said. “They have other challenges relating to processing information and organizing their day.”
Though these individuals have higher functioning intellectual abilities, their challenges are no less significant. They typically struggle to process social interactions in their personal and professional lives.
“The adults who are higher functioning may suffer more than the adults with intellectual impairments related to autism,” said Linda Watson, a professor who specializes in autism research at the University of North Carolina School of Medicine. “The services that are available are oftentimes geared more towards the individuals who have intellectual impairments.”
Diverse disorder rises in prevalence
This prevalence rate of ASD diagnoses is consistently growing. Within the past 10 years, the number of students with autism in the North Carolina public school system has more than tripled. According to Laxton, two other factors have gone in to these increased rates – better research in to autism and overactive diagnoses.
But Watson doesn’t believe that overactive diagnoses are as great of a threat.
“With more awareness, we are going to get more misdiagnoses, but on the whole we’re probably missing more kids than we are misdiagnosing kids,” Watson said.
Others say environmental factors may play a role in the increase in prevalence rates.
“There may also be something unknown happening that truly reflects a rise in autism” said Brian Boyd, a professor at the University of North Carolina School of Medicine. “It could be something environmental, but the prevailing theory is just that we’re better at screening and diagnosing kids than we were in the past.”
Most medical experts agree that the increase in ASD diagnoses are at least partially due to milder cases of autism now being more prevalently diagnosed. However, despite significant progress in diagnostic techniques, there are still improvements to be made.
“We’re still working on bettering bilingual assessment and diagnosis,” Boyd said. “Kids that are bilingual or learning English as a second language sometimes have communication delays, and we have to distinguish what’s autism and what’s communication delay. We’re also still trying to work out assessment of kids who have other intellectual disabilities that may be mistaken for autism.”
Children diagnosed with ASD can exhibit developmental irregularities at as early as 18 months. Though infants could still be developing language skills at this early age, children should express their needs in other ways, such as crying or making noises. Red flags are raised when an infant cannot express a need for food, a diaper change or parental attention. Autistic children may also avoid making eye contact when interacting with people or objects. A lack of interest in toys, pets or environmental changes may be a warning sign of ASD.
The American Academy of Pediatrics recommends that newborn children be screened for ASD after 18 and 24 months during their routine well-child visits. Still, the mean age of ASD diagnosis in North Carolina is 37 months.
Parents typically answer a questionnaire known as the Modified Checklist for Autism in Toddlers (M-CHAT). These questions assess the social skills of the child and restricted behaviors. Suspicious responses merit further testing.
“There are developmental milestones that people are supposed to reach at certain ages,” Laxton said. “If there are some delays in reaching those milestones, especially around language and communication, that’s something that needs to be looked at pretty closely.”
Because autism disorders vary across the spectrum, each individual’s intervention plan is unique. Autism treatment usually involves behavioral and educational therapies, possibly combined with medicines. Many individuals with ASD typically face additional medical conditions that require further medical treatments.
Adults with ASD struggle to compete
Increased awareness has led to a rise in ASD being diagnosed in early childhood, but individuals who reach adulthood have struggles of their own.
“They can continue in to high school until they are 21,” said Lisa Guy, clinical director of the UNC TEACCH Autism Program’s Greensboro Center. “Then at 21, they graduate from the special education system. We are seeing that there really is a lack of services for individuals as adults. That’s really true for individuals in North Carolina as well as throughout the country.”
Despite a lack of services across the autism spectrum, high functioning individuals with ASD are making plans for post-secondary education at a rate that has outpaced empirical research.
“Oftentimes people get their college educations, and they still are not successful once they get out in to the job world,” Watson said. “So it’s not a panacea for solving the problems of careers and independent living.”
Brian Boyd agrees that adulthood is especially challenging for individuals across the autism spectrum.
“One of the things that we found is that if you compare kids with autism to kids with other intellectual or learning disabilities, it is children with autism who are most likely to not be employed post high school,” said Boyd. “They have some of the worst post high school outcomes. A lot of them may unfortunately end up staying at home, because they can’t fight competitive employment or even supported employment.”
What can be done?
Aside from doing research and learning more about ASD, Laxton encourages people not directly affected to contribute time and resources.
“The Autism Society of North Carolina is a nonprofit, and we do provide a lot of services throughout the state. It costs money to do that and providing services to individuals with autism is a very expensive proposition,” Laxton said.
As more people are diagnosed, treatment and support become increasingly expensive, placing a greater strain on societal efforts.
“We have to do more fundraising on an annual basis to try to meet the need,” Laxton said.
That increase in diagnoses has an additional byproduct – a higher possibility of knowing someone affected. With one in 68 people on the autism spectrum, there is a greater chance of having a connection with someone affected than ever before. Laxton says that fact alone should encourage people to research the facts behind autism.
“It’s not a matter of, ‘do you know somebody?’” Laxton said. “It’s a matter of, ‘when will you know somebody?’ That’s why it’s important to understand for people to understand it.”
The Autism Society also conducts several community events, such as Autism Walks, to promote awareness of autism across the state. In 2015, eight walks are scheduled in cities such as Raleigh, Greensboro and Wilmington. The society also gives the opportunity for people to design their own fundraiser to support autism and its treatments.
Laxton says that even though the cause always needs support, those directly affected don’t realize it.
“They don’t view themselves as folks that need to fixed or cured, they like themselves just the way that they are and the more that you spend time in this community you realize that it is like a big extended family.”
For more reporting on ASD in Alamance County, North Carolina visit http://www.cdonohue.com/autism-alamance/