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CDC calls new numbers "urgent public health concern"

Richard Moore
Investigative Reporter

The hopes and expectations of many experts were dashed last week as new official government autism numbers were released, and once again the prevalence rate of autism spectrum disorders (ASD) was marching upward.

The numbers reflect the Centers for Disease Control's biennial report (using 2014 data) of the official number ofautism cases at 11 monitoring sites across the United States, showing that one in 59 children in the United States has autism.

That's a 15-percent increase over the last report issued in April 2016 (using 2012 data), when the CDC reported a prevalence rate of one in 68 children. When comparing the same sites that participated in 2012 (six out of 11), the increase in prevalence was even more pronounced.

"Among the six ADDM sites completing both the 2012 and 2014 studies for the same geographic area, all six showed higher ASD prevalence estimates for 2012 compared to 2014, with a nearly 10 percent higher prevalence in Georgia and Maryland, 19 percent in New Jersey, 22 percent in Missouri, 29 percent in Colorado, and 31 percent in Wisconsin," the report stated. "When combining data from these six sites, ASD prevalence estimates for 2014 were 20 percent higher for 2014 compared to 2012."

The ASD prevalence estimate from New Jersey continued to be one of the highest reported by a population-based surveillance system.

The new numbers represented disappointing news to those who had thought autism numbers might be plateauing. Hopes had been high because the one-in-68 rate in 2016 was the same as the prevalence rate of one in 68 reported in 2014 (using 2010 data).

It's also disturbing because the increase parallels an increase in prevalence rates in parental surveys by the National Center for Health Statistics, the latest of which put the number at one in 36, up from one in 45 children in the previous survey.

The parental numbers usually show higher prevalence rates for various reasons, but the significant fact is that the trend line in both surveys is continuing to move upward.

Overall, the CDC said, the numbers reflect an urgent public health concern.

"With prevalence of ASD reaching nearly 3 percent in some communities and representing an increase of 150 percent since 2000, ASD is an urgent public health concern that could benefit from enhanced strategies to help identify ASD earlier; to determine possible risk factors; and to address the growing behavioral, educational, residential and occupational needs of this population," the report stated.

Angela Geiger, the president and CEO of one of the nation's oldest autism education groups, Autism Speaks, also called the matter urgent.

"These findings demonstrate that while progress has been made on some fronts, there is still much work to do," Geiger said. "They urgently warrant a significant increase in life-enhancing research and access to high quality services for people with autism across the spectrum and throughout their lifespan."

Geiger said Autism Speaks was calling on legislators, public health agencies, and the National Institutes of Health to advance research that provides a better understanding of the increased prevalence and the complex medical needs that often accompany autism.

Lisa Ackerman, the executive director of Talk About Curing Autism (TACA), a national non-profit organization dedicated to educating and supporting families affected by autism, called the new numbers another major jump in the wrong direction. 

"Since TACA started, over 17 years ago, there have been eight new autism prevalence numbers announced by the CDC," Ackerman said. "With each increase, I think this number will activate more to care. This prevalence rate means even more parents are being told their child has autism. The diagnosis of one child significantly affects the parents and siblings too. We need to care. We need to act."

When a family receives an autism diagnosis, there is a huge learning curve, Ackerman said. 

"Therapies, medical intervention, diet, educational services and emotional support are matters most families know little about when a child is diagnosed," she said. "Our goal is to speed up the cycle time from diagnosis to effective treatments to independence and/or recovery. A prevalence rate of 1 in 59 cannot be ignored. Families are counting on us to act and support as we can no longer ignore this epidemic."

Autism is so prevalent today that if it is not in your direct family, almost every U.S. citizen can say they know someone with autism or a family who is affected, Ackerman said.



Significant findings

For 2014, the CDC reported, the overall prevalence of ASD among the 11 ADDM sites was 16.8 per 1,000 (one in 59) children aged 8 years. 

But those numbers varied among the 11 sites, the government reported, from 13.1-29.3 per 1,000 children aged 8 years. 

"ASD prevalence estimates also varied by sex and race/ethnicity," the report stated. "Males were four times more likely than females to be identified with ASD. Prevalence estimates were higher for non-Hispanic white children compared with non-Hispanic black children, and both groups were more likely to be identified with ASD compared with Hispanic children."

Among the nine sites with sufficient data on intellectual ability, 31 percent of children with ASD were classified in the range of intellectual disability, with IQs below 70, 25 percent were in the borderline range (IQ 71-85), and 44 percent had IQ scores in the average to above average range (greater than 85), the CDC reported. 

But the distribution of intellectual ability varied by sex and race/ethnicity, the government found.

In addition, fewer than half of children diagnosed with autism by age 8 had that diagnosis by age 3.

"Although mention of developmental concerns by age 36 months was documented for 85 percent of children with ASD, only 42 percent had a comprehensive evaluation on record by age 36 months," the report stated. "The median age of earliest known ASD diagnosis was 52 months and did not differ significantly by sex or race/ethnicity."

In a much anticipated comparison, the government did not find significant differences between prevalence numbers based on the diagnostic criteria of the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV) and those based on a newer DSM-V criteria released in 2013, a drop of about 4 percent from DSM-IV.

"For the targeted comparison of DSM-IV-TR and DSM-5 results, the number and characteristics of children meeting the newly operationalized DSM-5 case definition for ASD were similar to those meeting the DSM-IV-TR case definition, with DSM-IV-TR case counts exceeding DSM-5 counts by less than 5 percent and approximately 86 percent overlap between the two case definitions," the report stated.

ASD prevalence was significantly higher among boys than among girls in all 11 ADDM sites, with male-to-female prevalence ratios ranging from 3.2 in Arizona to 4.9 in Georgia. Overall, the ratio of autism prevalence of boys to girls was 4-1, though that's narrower than the consistent 4.5-1 ratio during 2006-2012.



The report

The CDC numbers come from the Autism and Developmental Disabilities Monitoring (ADDM) Network, which it describes as an active surveillance system that provides estimates of ASD among children aged 8 years whose parents or guardians reside within 11 ADDM sites in the United States: Arizona, Arkansas, Colorado, Georgia, Maryland, Minnesota, Missouri, New Jersey, North Carolina, Tennessee, and Wisconsin. 

The surveillance is conducted in two phases. 

"The first phase involves review and abstraction of comprehensive evaluations that were completed by professional service providers in the community," the CDC states. "Staff completing record review and abstraction receive extensive training and supervision and are evaluated according to strict reliability standards to certify effective initial training, identify ongoing training needs, and ensure adherence to the prescribed methodology."

The CDC says the record review and abstraction occurs in a variety of data sources ranging from general pediatric health clinics to specialized programs serving children with developmental disabilities. In addition, most of the ADDM sites also review records for children who have received special education services in public schools. 

In the second phase of the study, all abstracted information is reviewed systematically by experienced clinicians to determine ASD case status. A child is considered to meet the surveillance case definition for ASD if he or she displays behaviors, as described on one or more comprehensive evaluations completed by community-based professional providers, consistent with the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, diagnostic criteria for autistic disorder; pervasive developmental disorder - not otherwise specified (PDD-NOS, including atypical autism); or Asperger disorder. 

In 2013, the DSM-V was published, which, as the CDC observed, made considerable changes to ASD diagnostic criteria. Because those changes could influence prevalence estimates, the CDC submitted 85 percent of the records used to determine prevalence estimates based on DSM-IV to additional review for ASD consistent with the DSM-5 diagnostic criteria. 

Children meeting the new surveillance case definition could qualify on the basis of one or both of the following criteria, as documented in abstracted comprehensive evaluations: 1) behaviors consistent with the DSM-5 diagnostic features; and/or 2) an ASD diagnosis, whether based on DSM-IV or DSM-5 diagnostic criteria, CDC stated.

Limitations

Many experts believe the parental survey numbers are more accurate, and CDC acknowledges some limitations to the official results.

"First, ADDM Network sites were not selected to represent the United States as a whole, nor were the geographic areas within each ADDM site selected to represent that state as a whole (with the exception of Arkansas, where ASD is monitored statewide)," the CDC stated. "Although a combined estimate is reported for the network as a whole to inform stakeholders and interpret the findings from individual surveillance years in a more general context, data reported by the ADDM Network should not be interpreted to represent a national estimate of the number and characteristics of children with ASD."

Second, the agency stated, it is important to acknowledge limitations of information available in children's health and education records when considering data on the characteristics of children with ASD. 

"Age of earliest known ASD diagnosis was obtained from descriptions in children's developmental evaluations that were available in the health and education facilities where ADDM staff had access to review records," the report stated. "Some children might have had earlier diagnoses that were not recorded in these records."

Likewise, the report continued, some descriptions of historical diagnoses could be subject to recall error by a parent or provider who described the historical diagnosis to that examiner. In addition, the report stated, another characteristic featured prominently in the report, intellectual ability, was subject to measurement limitations. 

Finally, the CDC stated, because comparisons with the results from earlier ADDM surveillance years were not restricted to a common geographic area, inferences about the changing number and characteristics of children with ASD over time should be made with caution.

The parental survey has limitations of its own, as the 2014 report pointed out.

First, that report's authors said, the reliance on parental reports could result in misreporting of children's diagnoses and may also be subject to recall biases. For example, the authors wrote, with the addition of Pervasive Developmental Disorder to the ASD question in 2014, some parents may hear 'developmental disorder' but not hear or understand the word 'pervasive,' leading them to incorrectly report a non-ASD developmental delay as ASD.

Then, too, the report states, there are many reasons children who received a diagnosis in the past may no longer meet the criteria for a diagnosis, including, but not limited to, maturation, misdiagnosis, and effective treatment. 

In addition, the authors continued, NHIS is a survey of the noninstitutionalized population and, therefore, children living in places other than the household, such as hospitals, would not be included in a reported prevalence.

Richard Moore is the author of The New Bossism of the American Left and can be reached atwww.rmmoore1.com.