Located on the main campus of Nova Southeastern University, in Fort Lauderdale, FL, the Baudhuin Preschool is a center-based facility for children with autism spectrum disorders. Part of the Broward County Public School system, the sixth largest in the country, the preschool has 155 students-half of the preschoolers identified with autism in the county.
Having access to this large population was an ideal opportunity for Baudhuin educators Susan Kabot, EdD, CCC-SLP, and Nurit Sheinberg, EdD, to launch a study aimed at answering some questions about diversity, socioeconomic status and early intervention for children with autism.
"We have a great sample under one roof, and we've always felt that we needed to use that sample to get information about children with autism," Dr. Kabot told ADVANCE. "Because we're located in South Florida, we have a very diverse student population, and that population has really changed over the years that we've been serving children with autism. At this point, we almost have an even split in our county among white, African American and Hispanic families."
After reading several studies that indicated African American children with autism tended to be identified much later than their peers, she teamed with Dr. Sheinberg to study the student population of Baudhuin in an effort to determine if ethnicity or socioeconomic status play a role in identifying and obtaining early service delivery for students and their families.
Due to the naturally large sample size, Dr. Sheinberg was optimistic about extending the findings beyond Baudhuin. "It's not a small, isolated sample. Hopefully, it would represent what was happening in Broward County and give a sense of how those social demographic characteristics might be associated to important factors like when children are diagnosed and when parents become concerned. Having a program with such a large, diverse population of children with autism, it's a wonderful opportunity for study and to provide information to their families about the general field of autism."
She and Dr. Kabot gave questionnaires to the families to collect demographic information, the history of their child's diagnosis, and data on any additional interventions the child received prior to entering Baudhuin. They had a particular interest in noting what age families had recognized developmental differences in their child.
"One of the things we hear from families all the time is ?I told my pediatrician, and he told me it would go away' or ?I told my pediatrician, and he told me that boys talk late,' discounting the family's thinking about their child. We wanted to find out about that," Dr. Kabot said. In addition, "we wanted to know what kind of interventions families were accessing and what influenced that behavior."
Anecdotally, the researchers had observed that children were coming to the preschool younger. They wondered how much time was elapsing between the initial parent concern and the start of intervention.
"In the late 1980s and early 1990s, it was not unusual to get a 4-and-a-half-year-old child who would come in just for a few months at the end of the year before kindergarten," Dr. Kabot recalled. "That is not the usual pattern now. Most of our children are here on their third birthday, which is the earliest they are allowed to come into our preschool program."
The researchers paid close attention to any factors that could have influenced parents earlier or heightened awareness of autism-like symptoms or behaviors. "Our first hypothesis was that ethnicity was an important factor because the literature supports that sometimes African American children get diagnosed later, but we found that wasn't the case within our sample," Dr. Sheinberg stated. "Ethnicity was not a factor that predicted when children were being identified or diagnosed."
The most important factor across all demographics proved to be maternal education. "Children who had mothers with higher levels of education were receiving more services at an earlier age," she said.
Another factor was a family's previous experience with autism. Those who already had a child diagnosed with autism were more likely to notice developmental differences in another child at an earlier age. Knowing what to look for raised parental awareness.
Across all demographics, once parents became aware of symptoms, they very quickly took steps to begin intervention. "The initial point of when they became concerned was critical, and it was highly correlated with maternal education," Dr. Sheinberg said. "We might not be able to change maternal education levels, but we can provide more knowledge to parents and families in general so they are more aware of what types of things to look for."
Most children (84 percent) received some kind of therapy before age 3. The type and amount of early intervention services generally was influenced by maternal education and family income. Children typically began services around 25 or 26 months old and received an average of seven-and-a-half hours of therapy per week.
"We call age 3 early intervention, but we know the children [at Baudhuin] were receiving intervention services before age 3, before the children could be eligible through the county to enter our program," Dr. Sheinberg said. "You see that sort of discrepancy between parents who have more resources and are able to seek out those services."
Therapy hours tended to drop drastically once children entered preschool, said Dr. Kabot, noting that Baudhuin is a full-day, six-hour program. "Once they received full-time programming, many of the families did not continue with the therapeutic intervention." Of families that did continue private services, the time generally dropped to about two to three hours of therapy per week.
However, the demographics reflected in the survey results harkened back to the original literature finding that had been so troubling. The clinicians were concerned that 30 percent of students in the county diagnosed with autism are African American, while only 15 percent of the Baudhuin students are. "Those who are aware earlier are getting their children into programs at the same age as other parents, but it appears we are not reaching African American families at an early enough age," Dr. Kabot said.
The number of students in the federal free and reduced lunch plan at Baudhuin also does not line up with the numbers throughout the rest of the school district, a factor that the researchers link to maternal education levels and family income predictors. "The percentages of children receiving free and reduced lunch in the county is 39 percent. At Baudhuin it's 9 percent. There was a particular economic ratio of our sample that might make a difference from the rest of the county," Dr. Sheinberg stated.
Children in the county who are not Baudhuin students attend equivalent programs in elementary school classrooms designed for preschoolers with autism. Since Baudhuin is serving half the children in the district between the ages of 3 and 5 who qualify for services, the researchers questioned the larger demographic implications of their findings. "The question is does this represent which children get early intervention and the others come into the system later, or is it a matter that children end up in different parts of the county at this stage?" she asked.
To verify whether the findings are Baudhuin-specific or an accurate reflection of an early identification issue in the county, the researchers plan to expand their study to include the other programs that service children who meet the educational eligibility for autism services. "We want to address it because if they're not identified, we want to find out how it is that [families] are not getting knowledge, how pediatricians are receiving the information, and why families are not being reached," Dr. Sheinberg said. "If it's more a matter of those children being identified and not making it to our program, we have to revisit and see what factors are affecting access to programs like ours."
"We need to check whether the 150 children who are being served by different programs look the same as our group," said Dr. Kabot. "We have to make sure the percentages are in line with our percentages."
They plan to continue collecting data from Baudhuin families to observe any changes in demographic, diagnostic and intervention onset factors from year to year. The preschool graduates about 75 children to kindergarten each year and admits 75 more, providing a larger database of family information to study.
"We can continue to gather information from each year to look at trends, such as whether children are being identified at younger ages and if recommending screening at 18 and 24 months will make our sample get younger and younger," Dr. Kabot said. "Hopefully, it will."
- Sheinberg, N., Kabot, S. (2008). Demographic differences in identification and program access for children with autism. Autism Society of America National Conference, July 11.
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Alyssa Banotai is Senior Associate Editor of ADVANCE. She can be reached at firstname.lastname@example.org.