On the Path to Understanding Autism

Data Brief 97, “Diagnostic History and Treatment of School-aged Children with Autism Spectrum Disorder and Special Health Care Needs,” published in May 2012, is available for download from the NCHS website.

A collaborative effort between NCHS, the National Institute of Mental Health (NIMH), and the federal Maternal and Child Health Bureau (MCHB) has provided the first detailed look at the process of diagnosis and the treatment of autism spectrum disorder (ASD), intellectual disability, and developmental delay.  The project has its origins in something completely unexpected—and, until all the data are analyzed, inexplicable, according to Stephen J. Blumberg, Ph.D.

Dr. Blumberg is one of the authors of a recent NCHS Data Brief, “Diagnostic History and Treatment of School-aged Children with Autism Spectrum Disorder and Special Health Care Needs.”  This data brief is the first of several reports that the research team will publish addressing autism spectrum disorder and children with special health care needs (CSHCN).

According to Dr. Blumberg, the seeds of research into the diagnosis and treatment of ASD were planted by a 2007 NCHS survey.  That survey—National Survey of Children’s Health—included questions about ASD that were used by MCHB and CDC to generate a prevalence estimate of parent-reported autism.  The results, says Dr. Blumberg, were very consistent with CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network’s data, long considered the gold standard for autism research.

But the results also revealed something no one had seen before:  A considerable number of parents who said that their children once had autism—but didn’t have it anymore.

“That,” Dr. Blumberg says, “was completely unexpected.”

That unusual finding caught the attention of NIMH, which wanted to know more about these children who seemed to lose the diagnosis.  NIMH approached NCHS and MCHB to collaborate on a survey to study this finding, and diagnosis and treatment generally.

Funding for the project was provided by NIMH from American Recovery and Reinvestment Act grants.  NCHS, NIMH, MCHB, and a team of external advisers developed the resulting survey, Survey of Pathways to Diagnosis and Services, known generally as the Pathways Survey.

The Pathways Survey was conducted via the State and Local Area Integrated Telephone Survey (SLAITS).  SLAITS has been fielding children’s health care surveys sponsored by MCHB since 2001, but this was the first time that SLAITS fielded a follow-up survey to investigate a question that arose from an earlier survey.

The recent NCHS Data Brief, Dr. Blumberg says, looks generally at diagnostic history and treatment.  Subsequent reports will look at intellectual disabilities and developmental delays, and, of course, the group of children whose parents report that they no longer have ASD.

Dr. Blumberg cites pediatric health care researchers and policy makers as the target audience for the reports but notes that pediatricians are a key audience as well, since they are among the first to recognize developmental disabilities.  The data may also be used by the Department of Health and Human Services’ Interagency Autism Coordinating Committee, which facilitates and provides advice on prioritizing departmental autism-related activities.

Dr. Blumberg notes that, in contrast to the usual difficulties recruiting participants for telephone surveys, the Pathways Survey was remarkably easy to field.  “Parents of these children were happy to talk with us,” he says.   “They were excited to have an opportunity to share their stories, and they were pleased that CDC was taking an interest in their children.”

Dr. Blumberg will discuss “Autism, Autism Spectrum Disorder, and Other Developmental Delays: The Survey of Pathways to Diagnosis and Services” at the National Conference on Health Statistics, Tuesday, August 7, 1:30-3:00 p.m.  Visit the Conference page to register.