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Training program meets ‘critical need’ for earlier autism identification

by | Posted on Thursday, Jul. 11, 2013 — 1:00 AM

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A Vanderbilt research program that trains community pediatricians to diagnose autism within their individual practices may lead to more effective treatment of the disorder that now affects an estimated one in 88 children.

Vanderbilt University Medical Center researchers released today in the journal Autism the results of a three-year study that evaluated the effectiveness of a training program designed to enhance autism spectrum disorder (ASD) identification and assessment within community pediatric settings across Tennessee.

After participating in training to learn strategies for conducting rapid diagnostic assessments following positive ASD screenings, pediatricians reported significant changes in their screening and consultation practices, with 85 percent reporting an increase in numbers of children with autism evaluated within their practice. The study also found that pediatric providers were nearly as accurate as specialists in their diagnoses, with agreement seen in more than 90 percent of all cases.

Zachary Warren, Ph.D., associate professor of Pediatrics, Psychiatry and Special Education and director of the Vanderbilt Kennedy Center’s Treatment and Research Institute for Autism Spectrum Disorders. Photo by Susan Urmy/Vanderbilt.

“Ideally, definitive early diagnosis of ASD would be rapidly accomplished by a team of developmental specialists, and children at risk for diagnosis would obtain services immediately after screening positive. The reality is that such diagnostic teams, or even individual professionals, are not available in most locations,” said corresponding author Zachary Warren, Ph.D., associate professor of Pediatrics, Psychiatry and Special Education and director of the Vanderbilt Kennedy Center’s Treatment and Research Institute for Autism Spectrum Disorders (TRIAD) at Vanderbilt University. “Even when available, the waitlists for diagnostic services are so long that children referred for evaluation wait extended periods of time for diagnosis.  As a parent, I cannot fathom how stressful it would be to be told that your child may have autism, and we’ll let you know the answer to that question in six to 12 months.”

Despite screening initiatives, advocacy efforts and increased public awareness, the most recent Centers for Disease Control and Prevention data regarding autism prevalence suggest that the diagnosis is still not made until 4-5 years of age.  The increased prevalence of autism and documented benefits of early intensive intervention have created a need for flexible systems for obtaining accurate, time-efficient diagnoses, the authors wrote.

“Although the field has made great advances in early screening for autism, the steps taken after a positive ASD screening in community settings are much less clear and often problematic for clinicians, families and systems of care alike,” Warren said. “Essentially, more children are being referred for a very limited number of expert diagnostic assessment resources. Because of this, wide-scale screening for ASD at young ages may in fact increase wait times for diagnostic assessment.  Given this context, it is critical to develop enhanced ASD-specific diagnostic training programs if we hope to shift the age of diagnosis and promote earlier access to early intervention.”

The training was designed to teach enhanced diagnostic consultation and interactive screening procedures to community pediatricians so that they could offer families the opportunity to be rapidly evaluated within practice rather than being referred to a specialty clinic, where they would likely have to wait many months before being seen.

Amy Swanson, M.A., TRIAD Research and Training Coordinator. Photo by Kylie Beck/Vanderbilt.

“The findings provide initial evidence suggesting early accurate diagnosis of autism may be possible and appropriate within many community pediatric practices,” said Amy Swanson, M.A., TRIAD Research and Training Coordinator and lead author of the study. “Given the potentially harmful consequences of lengthy waits for comprehensive diagnostic evaluations, the potential impact of such training programs for advanced autism diagnosis within community practice settings could be quite powerful.”

Key findings:

  • Community pediatric providers were more likely to conduct independent autism assessments within their practice, rather than referring the child for outside evaluation.
  • Community pediatric providers showed high agreement in ASD classification with expert clinicians.
  • A dramatic shift was seen in pediatric providers’ sense of the appropriateness for a child to receive a diagnosis from his or her primary care provider, without or before a comprehensive evaluation.
  • A dramatic shift in the comfort level of discussing ASD diagnoses with caregivers was seen.
  • There was a significant increase in the number of diagnoses made within respective provider practices.

This study builds on pilot findings from 2009 by presenting a more comprehensive evaluation of the training model and utilizing a broader sample of pediatric providers.

Although this training program targeted the state of Tennessee, Vanderbilt’s research team has also provided this training in several other states and presented the model to the Society for Developmental and Behavioral Pediatrics.

This research was made possible by the Maternal and Child Health Bureau, Health Resource and Services Administration, Department of Health and Human Services (grant number T73MC00050).

 

 

 

 

 

 

Contact:
Jennifer Wetzel, (615) 322-4747
jennifer.b.wetzel@vanderbilt.edu


  • Anne Dachel

    What’s missing in this report is any explanation for why a
    once rare disorder is now so common that doctors have to be trained to identify
    it.

    Does “the increased prevalence” refer to
    the claim that all the autism is just better diagnosing of a disorder that’s
    always been around?

    The problem with that claim is that no one has ever been
    able to show us adults with autism at a rate even remotely comparable to the
    rate we see in our children.

    In the 1970s, the autism rate was one in every 10,000 kids and almost no one knew anyone with autism. That changed when the definition was broadened in 1994 to include other behaviors doctors were seeing in children. At that point the numbers exploded.

    1995 1:500
    2001 1:250
    2004 1:166
    2007 1:150
    2009 1:110
    2012 1:88
    2013 1:50
    If this were really better diagnosing—no real increase, the rate would have leveled out between 1995 and 2000, after the definition was changed in 1994. That hasn’t happened. One has to wonder how bad the numbers have to get before we recognize that autism is a national health care emergency and honestly address what’s happening to our children.

    Anne Dachel,
    Media editor: Age of Autism.

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