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Monday, January 13, 2014

Diagnosis Bottleneck

One of the frustrations that parents of children with autism most commonly voice is the long wait for a diagnosis.
Delays can occur at every step of the process. A child’s pediatrician may not be trained in identifying signs of autism, for example. A worrisome screening test may get lost in the shuffle without triggering a referral for follow-up. Even once a referral is made, a child suspected of having autism often spends months on a waiting list for evaluation at a specialized autism clinic.
“There is on average a two-year gap between when the problem was first noted and when the [children] are diagnosed,” says Matthew Maenner, an epidemiologist at the Centers for Disease Control and Prevention (CDC)’s National Center on Birth Defects and Child Disabilities in Atlanta. In fact, CDC data show that only 20 percent of children who have symptoms consistent with autism receive a formal diagnosis by 3 years of age1.
There are then likely to be more long waits for practitioners who have expertise in caring for people with the disorder, adding up to years of delays.
In the meantime, the children grow up and out of the critical period for early intervention.
What’s more, the gulf between supply and demand may be growing. The American Academy of Pediatrics recommends that every child be screened for autism at 18 and 24 months of age. Yet only about half of pediatric practices routinely conduct such screenings2, 3.
This means that as more practices fall in line toward universal screening, waiting times for a diagnosis are likely to grow longer.

1: Maenner M.J. et al. J. Am. Acad. Child Adolesc. Psychiatry 52, 401-413 (2013) PubMed
2: Carbone P.S. et al. J. Autism Dev. Disord. 43, 964-972 (2013) PubMed
3: Zuckerman K.E. et al. Pediatrics 132, 445-453 (2013) PubMed