Autism prevalence rates have increased significantly since 2000. Data from the Centers for Disease Control and Prevention's Autism and Developmental Monitoring (ADDM) Network put the prevalence rate at the beginning of this century at 6.7, which equals about 1 in 150 American children being identified with autism spectrum disorder (ASD). The latest data moves that rate to 18.5 or about 1 in 54 children with ASD (see box).
In Tennessee, the latest numbers show 1 in 64 children fall on the spectrum. With more than 1.5 million children in the state, those statistics underscore the great need for early assessment and intervention, which research has proven maximizes lifelong outcomes for children and families.
Nashville is home to the Vanderbilt Kennedy Center's Treatment & Research Institute for Autism Spectrum Disorders (TRIAD), which is one of 11 ADDM sites in the country. With wait times across the U.S. averaging from six months to a full year for an initial evaluation, TRIAD and Vanderbilt University Medical Center researchers have embarked on a study to test tools that could be remotely deployed via telemedicine to speed evaluation and connect children with therapy earlier.
Helping address those capacity needs, Nashville has benefited from two recent expansions of autism services in the community. The Siskin Children's Institute, which has served children in Chattanooga for 70 years, cut the ribbon on their new Nashville office in late January. At the beginning of this month, Autism ETC held a virtual ribbon-cutting on their brand new, 9,500-square-foot clinic on Music Valley Drive.
Carissa Coker, MS, BCBA, LBA
"The wait list to get diagnosed with autism is extremely long," said Carissa Coker, MS, BCBA, LBA, clinical director at Autism ETC. "The median age of diagnosis right now is 3 years, 10 months." Yet, she continued, children could be diagnosed as early as 18 months and certainly by age two.
Tina Patterson, MEd, BCBA, LBA, lead behavior analyst for Siskin Children's Institute in Nashville, said the long wait list for both diagnostic assessment and treatment in Middle Tennessee factored into Siskin establishing a presence here. Patterson, who has worked in the Nashville community for 25 years, said the new office has a developmental pediatrician on staff and is actively looking to expand both the diagnostic and interventional team to meet demand. "Siskin recognizes there is a growing need for developmental and behavioral pediatrics," she continued, adding the non-profit organization takes an integrated, collaborative approach to assessment and therapy.
Autism ETC contracts with a clinical psychologist for diagnostic evaluations ... but, as with other trained evaluators, there is a wait list. "Although Autism ETC provides diagnostic evaluations, the availability of providers who can perform this testing is very limited," noted Rhonda Manous, executive director of Autism ETC. The issue, she added, is multifactorial and includes bottlenecks in credentialing and certification, as well as actual training.
Manous added the frustration is real for pediatricians and parents who recognize a child has developmental delays, know that time is critical for intervention, and yet can't get the needed confirmation required to begin therapy. "There's just one hurdle after another these families have to jump over to get their child these medically necessary services," she said.
Even with documented notes in medical or preschool records, Patterson said, "Only one-third of children with autism receive a diagnostic evaluation from a developmental pediatrician by age three ... so there's a gap between early concerns and their first diagnostic evaluation." This is despite clear evidence showing early intervention works faster and lasts longer, she added.
Both Siskin and Autism ETC utilize evidence-based applied behavior analysis (ABA) to improve communication, attention and social skills while decreasing behavioral problems in children on the autism spectrum.
Patterson noted, "The science of learning and behavior has over 100 years of research behind it." She added, "We look at trends of behavior data to determine the 'why.' Once we can determine why, then we teach new skills to get the child where they want to be to achieve social and emotional goals."
She explained the three main deficits in autism are impaired communication, impaired social interactions and restricted or repetitive behaviors. And, because autism is a spectrum disorder, children will have different abilities to be considered in addressing each of these key areas.
For example, Patterson noted, a child might throw a tantrum out of frustration because they aren't able to communicate that they want a drink. With ABA, a therapist might work with a child to simply say 'cup,' or hold up a picture of a cup or to type or show the cup on an iPad.
"We can communicate in different ways," Patterson pointed out. "It doesn't have to be verbal." The ultimate goal, she continued, is to get the message across in a way others can understand. "Access and opportunity are huge. When you don't have the developmental skills, you aren't included and don't have access to opportunity," she said of the difference communication makes in a child's life.
Coker noted ABA therapy utilizes positive reinforcement to decrease problem behaviors and increase the probability that a good behavior will happen again. "Something that will absolutely inhibit these children from being successful in a public school setting are these problem behaviors," she explained. "ABA is always tailored to each person individually," Coker continued of being able to design therapy to meet a child's personal abilities.
Coker said Autism ETC's day program utilizes discrete trial training (DTT), which breaks learning into small, 'discrete' components with one-on-one skills work, social skills time focused on interaction with others, and class time with teachers, which might be circle time for toddlers or more advanced learning for older children. "We have smartboards in all our classrooms so we make learning fun," Coker said.
For some children who receive early intervention, Coker noted, "The outcome can be that they are able to go to school and graduate at every level and live a really, really great life." Regardless of where a child falls on the spectrum, she added ABA helps children make strides. "The goal is to help children and families achieve the best possible outcome and the happiest outcome they possibly can," she stated.
While early intervention is preferable, gains can be made at older ages, as well. "We advocate for early intervention because the brain is so malleable when you're young," said Patterson. However, she continued, evidence shows significant gains are still made from ages five-12 and in older kids in the 12-22 age group, as well.
Siskin in Nashville
Recognized for working with children with ASD, Patterson said the Siskin Institute is equally known for their work in the broader arena of developmental disabilities. "According to the U.S. Department of Health and Human Services, 1 in 7 children between the ages of three and 17 have a developmental disability. That's 14 percent of children," she noted of the large demand for services.
"Siskin aims to provide evidence-based services for children with diverse abilities using a family-centered approach to increase access and opportunity for each child to reach their goal," explained Patterson.
During the current 'stay at home' order, the clinic in Nashville is closed through April 24. However, Patterson said that doesn't mean patient need or provider help stops. "Siskin has telehealth procedures to help support families," she explained. "That's been used heavily over the last weeks."
She added Siskin is forming referral partnerships with local pediatricians and other therapeutic clinicians as they build their presence in Nashville. "We offer diagnostic evaluations and treatment from developmental pediatricians with minimal wait time for children to receive therapeutic services," Patterson said.
Autism ETC's New Facility
Manous said the new Music Valley clinic is more than double the size of the previous clinic, which was converted from a private residence. Although Autism ETC isn't a school, she said the objective has always been to create a school-like setting for therapy. "Our goal is to prepare children for school for the first time, or ... for children who have not been successful in school, to address deficits to return to the school setting," explained Manous.
The new location, similar to Autism ETC's clinic in Clarksville that opened in 2009, is purposely designed very much like a school with two classrooms, bathrooms with stalls, a cafeteria with lunch tables, playground area and gym, along with individual therapy rooms. Coker said the larger space will allow Autism ETC to serve an additional 25 to 30 children in Nashville.
However, staffing remains a barrier to cutting their waiting list down further. "There simply aren't enough providers to be able to serve all the children, especially with the prevalence increasing," said Manous. She added Autism ETC provides training and shadowing to help those interested in becoming credentialed. "We're doing everything we can to make sure there are quality providers in Tennessee," Manous concluded.
New Report Finds Autism Prevalence Rising in U.S.
The prevalence of autism spectrum disorder among U.S. eight-year-olds rose 10 percent between 2014 and 2016, according to new CDC data published March 26.
As outlined in the report, 1 in 54 children eight years of age had a diagnosis of autism in 2016, compared to 1 in 59 children in 2014. In Tennessee, the prevalence rate increased from 1 in 68 children to 1 in 64.
The data was collected by the Autism and Developmental Disabilities Monitoring (ADDM) Network. Vanderbilt University Medical Center, one of 11 ADDM sites in the country, partnered with the CDC to publish specific data regarding ASD prevalence for 11 counties in Middle Tennessee for the second time.
Zachary Warren, PhD, a lead investigator for the Tennessee ADDM Network, said the number of children who are not receiving an evaluation for autism prior to the recommended age of three years is more alarming than rising prevalence rates. In Tennessee, only 36 percent of children received a comprehensive evaluation before their third birthday, and the median age of diagnosis was 51 months.
"The continued documented delay between early concerns and a diagnosis of autism -- both in the U.S. and in Tennessee -- highlights the need for innovative systems of care for screening, diagnosis and treatment," said Warren, executive director of the Vanderbilt Kennedy Center's Treatment and Research Institute for Autism Spectrum Disorders (TRIAD).
"Our novel programs include the use of telemedicine, the development of better diagnostic tools, workforce education and programs explicitly designed for rural and traditionally underserved populations. VUMC is focused on making early detection and action a reality for the children of our state."