Diagnoses of autism of have risen sharply in recent years, but a new study shows that while the number of students with autism increased in every state from 2000 to 2007, black and Hispanic children were significantly under represented.
The study, led by Dr. Jason Travers, an assistant professor of special education at the University of Kansas, analyzed administrative identification of autism in every state under the Individuals with Disabilities Education Act for the years 2000 and 2007. The disparity in the odds of white students identified compared with minorities might reflect a similar phenomenon associated with the widespread increase in students diagnosed with learning disabilities in the late ’70s and attention deficit hyperactivity disorder in the ’90s, the authors argue, and also shows that minority students probably are not getting the same services as their peers.
According to the Centers for Disease Control and Prevention, an estimated one in 68 children in the U.S. have autism spectrum disorder (ASD), a complex developmental disability that typically appears during the first three years of life and affects a person’s ability to communicate and interact with others. But Dr. Travers, who has studied trends in autism diagnosis rates, says there are discrepancies in the number of children diagnosed across different population subgroups.
“That’s a pretty alarming number,” Dr. Travers said of the CDC figure. “I wanted to see if there were differences in these rates. Previous research had found that African-Americans were over-identified. But the data I was looking at showed they were under-identified. This was during an era when autism prevalence rates were increasing across the board.”
For the study, published in the Journal of Special Education, Dr. Travers and colleagues Dr. Michael Krezmien of the University of Massachusetts-Amherst, Dr. Candace Mulcahy of Binghamton University and Dr. Matthew Tincani of Temple University examined autism identification rates from schools in all 50 states in 2000 and 2007. Administrative identification reflects rates at which schools — not necessarily a clinician — identify a child as having autism.
Diagnostic rates ‘depict what’s going on in schools’
Widely varying criteria from state to state are part of the problem, the authors state, but not the full story. White students identified as autistic increased from 2000 to 2007 in all states and the District of Columbia. The number of African-Americans identified increased in all states except Alaska and Montana, and the number of Hispanics increased in all states except Kentucky, Louisiana and the District of Columbia. While counts in all categories showed an increase, black and Hispanic children increased at much smaller rates, and all three increased at lower numbers than predicted by the CDC.
“Nearly every state that had proportional representation of students in 2000 underidentified black and Hispanic students in 2007,” the authors wrote. “Although there is no firm epidemiological evidence that race is predictive of autism, we found substantial racial differences in the ways U.S. schools identify students with autism.”
The discrepancies indicate a number of problems, Dr. Travers said. Chief among them, regardless of why white students are being identified with autism at higher rates, the results likely mean services are not equally accessible among the races. When more students of one race are being identified, more services for autism will go to those students, and not to students and schools that are underrepresented.
Critics have claimed that white students are being overidentified or that administrative diagnoses rates are not reliable. However, Dr. Travers pointed out, “these data depict what’s going on in schools. Whether or not they match with clinical diagnoses, the numbers can be associated with a variety of costs. They tell us about the human costs, financial resources dedicated to services, administrative costs, community costs and many others.”
Differences in diagnostic rates likely reflect disparities in treatment
The disparities also suggest that white students are more likely to access early intensive behavior intervention services, educational supports, occupational supports and others designed for students with autism than their black and Hispanic peers. Dr. Travers intends to address the disparities in future research and develop more accurate methods to predict disparities in rates of autism.
One possibility is to gather data from school districts, counties and states across the country on the number of students with autism and analyze other demographics such as neighborhood median income, teacher quality, number of students that qualify for free and reduced lunches, staff turnover and numerous other factors. He would then compare that data to U.S. Census information to develop advanced statistical models that could more accurately predict indicators for autism numbers in schools.
“I’m not convinced we thoroughly understand this problem in special education right now,” Dr. Travers said. “I think what’s needed is advanced statistical models that can more accurately identify predictors associated with identification.”
In addition, schools and states need to identify consistent methods of identifying autism. The longer they go without, and the more prevalence numbers are used for political purposes, the greater the inequity will be for minority students, as the data suggests. “Unfortunately, but not surprisingly, until this problem is thoroughly understood and scientifically validated methods to prevent the problem are identified, it seems that the majority of the un- or mis-identified students with autism will be children of color,” the authors wrote.
The broader context
Diagnostic disparities, which can also lead to delayed diagnosis or misdiagnosis, are well documented in the mental health literature. These disparities are further aggravated by the lack of culturally competent services that can address the specific mental health needs of minorities within the context of their culture, family, and community. Implicit biases, misperceptions, and general lack of cultural competence among providers can also worsen the quality of mental health care received by minority youth.
Importantly, children of color may be particularly vulnerable to mental health conditions given that many of the identifiable risk factors for poor mental health — including poverty, food insecurity, experiences of discrimination, chronic exposure to racism, and exposure to violence — disproportionately affect minority children. Further, studies indicate that minority populations may suffer from a higher prevalence of certain mental disorders including depression, anxiety, and even eating disorders — a class of disorders often perceived as being most common among high-income whites.
Despite national initiatives to reduce racial and ethnic disparities in mental health care, black and Latino children continue to be underrepresented in mental health care services utilization and spending. Nationwide data show that about 10 percent of white youth are using mental health care at any given time, compared to about half that percentage — between 4 and 5 percent — of black and Latino youth using mental health services. Furthermore, while mental health care spending increased for white children between 2002 and 2007, it decreased significantly for Latino children.
Ultimately, this means many children aren’t getting the care they need: Among U.S. children identified as needing mental health care, whites are approximately twice as likely as blacks and Latinos to initiate care.