WORCESTER — As a baby, the little girl we will call Robin was pretty quiet, not babbling very much, making little sounds. And there were other signs that troubled her mother, although others waved off her concerns.
“She didn’t respond to her name as you would expect. Sometimes it would take five, six, seven or more times before she would even look at us,” said Robin’s mother, who prefers that her family’s real names not be used in this story.
“As she got older she wouldn’t make eye contact when requesting, and she also started to display signs of extreme anxiety," her mother continued. "She would become very distressed and be unable to self-sooth or to be soothed by a parent or loved one.”
Robin’s behavior was suggestive of autism spectrum disorder — a range of many types of autism presenting different challenges with social skills, repetitive behavior, speech and nonverbal communications — which cannot be diagnosed through a medical test like a blood test or a screening tool like a CT scan.
Instead professionals such as developmental pediatricians, child neurologists or child psychologists need to examine a child’s behavior and development: walking, talking, interactions with others. In some children, ASD can be detected at 18 months, while for many others a reliable diagnosis can be reached later on.
But often children have a long wait before they are seen. According to data from an 11-state study of autism released in April by the Centers for Disease Control and Prevention, fewer than half of children identified with ASD received their first diagnosis by age 4, yet most had concerns about their development noted in their records before age 3.
Health-care professionals in Worcester say that the wait for ASD diagnoses in this area can be anywhere from six months to a year for children older than 3, and up to four to six months for children younger than 3.
But now a UMass Memorial Health Care neurodevelopmental disabilities pediatrician has devised a screening tool to cut that wait for an appointment to a few weeks for children younger than 3.
With the incidence of ASD increasing, according to the CDC, cutting the wait time for a diagnosis is essential in this age group.
Delay in diagnosing ASD can be crucial, according to Dr. Roula Choueiri, a pediatrician who specializes in neurodevelopmental disabilities at UMass Memorial. “Treatment for autism requires, in addition to the regular early intervention that any child can have access to in case there are (developmental) delays, a more intensive form of behavioral intervention called ABA or applied behavioral analysis,” she said.
Since a Massachusetts law passed in 2010 requiring private insurers to cover both diagnosis of ASD and treatment by therapies that are deemed “medically necessary,” a wide spectrum of interventions and services is available in the commonwealth.
“Research shows that children on the spectrum who receive early intensive services have better outcomes,” said Jeanine Mindrum, a speech/language pathologist at Thom Worcester Area Early Intervention, a private, nonprofit agency in Worcester that offers a variety of developmentally appropriate groups and activities for infants and toddlers.
For example, in conjunction with the YWCA, the agency offers a program for toddlers who are walking but need support in their motor development. Co-led by an occupational therapist and a physical therapist, the group focuses on coordination, balance, strength and movement planning in the context of pre-sports activities.
According to Easter Seals Disability Services, early intervention helps to minimize the need for special education and related services once children reach school age. Access to services also reduces the need to institutionalize people with disabilities and maximizes their potential for independent living.
Even after receiving a diagnosis, it can take months to access services. “The whole process from concerns to services is quite lengthy, and unfortunately these children are left waiting at the wrong time,” said Robin’s mother.
Here’s the problem:
When a first-level screening such as the Modified Checklist for Autism in Toddlers is used for a universal screening at agencies like Thom Worcester Area Intervention and in pediatric practices, it’s recommended that a child who receives a positive score be referred for a developmental assessment.
“Only 50 percent of the children with a positive score receive a diagnosis of autism,” said Mindrum. “So this large pool of children gets referred for assessment after screening and they are all waiting for an assessment.
“It was not possible to sort out which children really needed to get a faster assessment so that they could receive the early intensive services they needed so everyone waited a long time,” she said.
The 10-minute interactive, nonverbal screening test developed by Dr. Choueiri, called the Rapid Interaction Screening Test for Autism in Toddlers (RITA-T), triggers the skills that are unique to ASD.
Take Robin, for example. She was not behaving as the average child might, like preferring to do things by herself most of the time. “She would look at other kids for a minute or two but wouldn’t really engage with them, only parallel-play,” said her mother.
“Children with only developmental delays are expected to have social communication skills comparable to children of the same age with no developmental delays. However, those with ASD will have delayed social communication skills compared to both groups of typically developing and those with developmental delays,” said Dr. Choueiri.
The new RITA-T screening test consists of nine interactive activities, which assess behaviors known to represent early signs of autism in toddlers, including joint attention, social awareness and reaction to emotion awareness of human agency.
“It is a screening test, and we caution providers to also use their clinical judgment and history, and if the score is in the gray area or borderline, but the history and presentation are suggestive of ASD, to still refer for a complete evaluation,” said Dr. Choueiri.
It took just three weeks after Robin’s screening test revealed her at high risk for autism for her to be seen by Dr. Choueiri who, after a complete assessment, confirmed what Robin’s mother had always suspected: that her daughter had ASD.
“My daughter was able to receive additional services once she received the ASD diagnosis, such as applied behavioral analysis and occupational therapy as well as physical therapy. She will be adding speech therapy soon,” said Robin’s mother.
In a research trial of RITA-T by the University of Calgary at Alberta Children’s Hospital in Calgary, Alberta, almost 300 toddlers have been tested with the wait time for a diagnosis declining from more than a year to about a month. Now training and use of the screening test has spread to other major Canadian cities while the program in Calgary continues to integrate the screening test into their triaging of patients.
Some 150 children from Worcester have also been evaluated with the new screening test, and that number will expand as Dr. Choueiri has been teaching the screening test and training groups so more providers working with toddlers can screen them.
Now she is working on an online course, which will be launched soon as part of the University of Massachusetts Medical School website at https://www.umassmed.edu/AutismRITA-T/about-the-test.