About the Work Group on Autism Research and Training

Exciting Achievements in Diagnosis


matt reeseWhen a parent suspects a child is developing slowly or atypically, alarm bells go off. A mom may voice concerns to a preschool teacher, or a dad will volunteer his suspicions during a routine, well-baby checkup. It's often the start of a long, puzzling process for the family, fraught with uncertainty and delay, sometimes resulting in a diagnosis of autism.

But a diagnosis is not an end when it comes to autism but a beginning, a jumping off point for critical intervention services. And research shows that the earlier intervention starts, the better the outcomes for child and family.

The American Academy of Pediatrics recommends screening and diagnosing children for ASD between 12-24 months of age. But, in practice, the national average is 4 1⁄2 years.

The reasons are many, according to Matthew Reese, K-CART co-director, psychologist and director of the Center for Child Health and Development (CCHD) at the KU Medical Center, K-CART's clinical partner. Symptoms aren't always unique to autism. Many children lack access to good health care. Socioeconomic factors can mask developmental disabilities, especially among non-English-speaking or low-literacy families. Physicians with little training in ASD sometimes encourage parents to simply wait it out.

Lowering the average age of diagnosis in Kansas is no simple matter, Reese said. Ideally, families who are worried about their child would talk to a medical provider but many small towns in western Kansas don't have a pediatrician, a primary-care physician or even nurse practitioner.

TELEMEDICINE

As a result, Reese and colleagues have worked to identify and train teams of non-medical professionals across the state who can screen and assess children locally. Composed primarily of infant, toddler and early childhood teachers, the local team collects information from the family, performs evidence-based assessments, and links via telemedicine with Reese at the CCHD in Kansas City, Kan.

Reese reviews the family's medical history, performs test-and-retest reliability checks, rules out other medical conditions and provides a diagnosis, all long distance. Reese, the child, the parents and the assessment team are together, virtually speaking, which has made a critical difference. "You have all the players in the same room who can run with the ball and help with the next step," Reese said. "The parents walk away with a game plan."

The Kansas Instructional Support Network and CCHD have already trained 30 out of 75 targeted autism teams, focusing first in western Kansas. Plus those teams do more than assess—they are community-based advocates for early intervention.

ON THE ROAD

Reese also takes a traveling team of CCHD clinical faculty and staff on the road at least twice a year—physicians, nurses, psychologists, occupational therapists and speech-language pathologists trained in developmental disabilities. Each team can screen and diagnose as many as 10 children in a single community for a range of developmental delays, not just autism.

Efforts are paying off. In the last two years the average age of children diagnosed with autism in Kansas has dropped to 3.5 years, a full 12 months younger than the national average. In its 2010 report to Congress, the Combating Autism Act singled out Kansas for making significant progress toward lowering the average age of diagnosis and increasing the ability of local communities to diagnose and treat ASD.

RESEARCH TREASURE TROVE

In 2010 the partnership between K-CART and CCHD produced another milestone: the first database in Kansas containing critical information about children suspected of autism. The brainchild of Sean Swindler, K-CART's director of community program development and evaluation, the CCHD database is a searchable resource that compiles family medical history, lifestyle, information on health issues that surface with autism (sleep problems, gastrointestinal distress) and details such as if or when a physician was consulted.

Reese estimates that data on more than 1,000 families calling into the CCHD every year is now being collected and will constitute a raw data gold mine for clinical teams, researchers and epidemiologists. The data will also be used to improve the clinical experience for children and families coming through the CCHD.

FUTURE LEADERSHIP

Reese also directs a nationwide training program that is working to pack the pipeline with young physicians and healthcare personnel who can make a difference in small and large communities alike. The Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program, funded by the Bureau of Maternal and Child Health, awards grants to research institutions to provide future physicians, dentists, psychologists, occupational and physical therapists and speech pathologists with clinical experience in developmental disabilities.

KUMC's program targets medical and graduate students from low-income, underserved, non-English speaking or rural communities. Since it began in 2007, Reese and CCHD colleagues have provided training for 88 students through the LEND program, one-fourth of them from culturally diverse backgrounds or underserved, rural areas.

In 2007, Reese also received a supplemental $200,000 grant from the LEND initiative to train interdisciplinary graduate students how to screen and diagnose ASD, specifically. About 100 students a year rotate through the clinic in month-long training sessions. "It's impossible these days for a graduate student to rotate through our center and not have direct experience with autism," Reese said.

"K-CART and CCHD are major partners in building capacity throughout the state," he added. "It all seems to be working really well."


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