MOUNTAINSIDE – In a study with national implications, researchers at Children’s Specialized Hospital found that in underserved communities using teachers to screen for autism in preschools and day care centers is more effective than the current system that relies solely on parents and pediatricians to identify the disorder.
The research, which could fundamentally change the way disadvantaged children are screened for autism, will be presented this week at the International Meeting for Autism Research, or IMFAR, in Toronto.
Studies have long suggested that racial and economic disparities exist in the early diagnosis and treatment of autism and as a result many poor children with the disorder miss out on valuable early intervention.
Researchers at Children’s Specialized Hospital, looking for innovative ways to identify these hard-to-reach children, created community-wide screening programs that used teachers as well as parents to help identify at-risk children. The programs also used culturally sensitive materials distributed in places such as health fairs and screening programs in health clinics. Employing these methods, the study found autism rates of nearly three percent in these underserved communities, significantly higher than the overall New Jersey rate of approximately two per cent.
“We found that unless we go out into underserved communities we are going to be missing many children who have autism,” said lead researcher Dr. Yvette Janvier, developmental/behavioral pediatrician and medical director – Toms River, Children’s Specialized Hospital. “This is the first study to look at using teachers in preschools and day care centers to screen for autism.”
Funded by the New Jersey Governor’s Council for Medical Research and Treatment of Autism, the study looked at six New Jersey communities: Newark, Plainfield, Elizabeth, Trenton, New Brunswick and Bridgeton.
Dr. Janvier noted that current American Academy of Pediatrics guidelines recommend that children be evaluated by their pediatricians at 18 months and 24 months.
“We had significant concerns these screenings were not happening and parents did not have the resources or ability to identify risk factors or red flag. We decided to go to where the children are – in preschools and day care centers. These teachers spend a lot of time with the children,” she said.
The research by Children’s Specialized Hospital involved two studies. The first looked at over 1,000 initial screenings conducted with children attending preschools or daycares in underserved areas. The average age of the children screened was just over four. These were children never diagnosed with autism. They were screened using parent and preschool teacher responses to either the Modified Checklist for Autism in Toddlers, known as the M-CHAT, or the Social Communication Questionnaire (SCQ) Six percent continued to screen positive after the interview and needed further evaluation, although 40 percent of them were lost to follow-up because the families moved, did not respond to attempts for follow up or parents did not want to participate. Thirty one of the 56 children who received the full autism research evaluation were subsequently found to have autism – a rate of nearly 3 percent.
Dr. Jill Harris, director of program development at Children’s Specialized Hospital, said the rate suggests a significant rate of autism in low-income, minority communities. The U.S. Centers for Disease Control found the average rate of autism in New Jersey is just over one child out of 49, or two percent.
Dr. Harris said, however, that the study cannot conclusively say the rates in underserved communities are higher since the study did not evaluate all the children with completed screens and used different assessment methods than the CDC study. Additionally, the most recent CDC statistics were based on information collected in 2008 and more recent data may reflect a different overall rate in NJ. Further study is needed, she said.
As part of their community wide screening efforts, the researchers also created Autism Screening Clinics in federally-qualified health centers. They also worked with community focus groups to create educational materials that were easy to understand and that clearly spelled out developmental milestones that babies and children should meet – such as when a child should be expected to talk for the first time, wave “bye-bye,” or play with other children.
The researchers found that in some communities where English is not a first language, for instance, a child who does not make eye contact might be considered deferential and respectful by a parent, even though this behavior potentially may be a sign of autism, Dr. Harris said. The researchers also found that challenging behavior in children may be recognized but not necessarily linked to autism.
The second study compared how accurate parents and preschool teachers were at identifying children at risk for autism. Completed MCHAT screens were obtained by both parents and teachers for 190 children. An additional 405 children were screened by both parents and teachers using the Social Communication Questionnaire, or SCQ.
“When parents answered the questions you had a much higher failure rate than you would expect,” Dr. Janvier said, adding some parents sought to provide what they perceived to be the “correct” answer.
Preschool teachers were found to be quite accurate at identifying children at risk, but not as accurate at determining which children were not at risk. That is, they sometimes over-estimated who was at-risk. The study concludes that both parents and teachers should be involved in screening children.
“We wanted to find the best strategies to reach these children early, when we know interventions may have a lot of impact,” said Dr. Harris. “Too many of these kids are not being picked up and may be missing time when they could have received effective intervention.”
Children’s Specialized Hospital is the preeminent provider of rehabilitation services for children with special needs. The hospital serves children affected by brain injury, spinal cord injury, premature birth, autism, developmental delays, and life-changing illnesses. Children’s Specialized Hospital has eight sites in New Jersey and treats 19,000 children each year, making it the largest pediatric rehabilitation system of its kind in the nation. Services include outpatient services, acute rehabilitation, and long-term care through its sites in Bayonne, Clifton, Mountainside, Toms River, Fanwood, Hamilton, New Brunswick and Roselle Park as well as outreach programs in many communities.
Children’s Specialized Hospital Foundation supports the programs and services of the hospital. The Foundation is ranked among the top six pediatric hospital foundations in the country. To help, or find more information, visit www.childrens-specialized.org.
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