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Many Doctors Have Delayed Autism Diagnosis by Ignoring Parent Concerns

New analysis of 2011 survey shows that many healthcare providers were dismissing parents’ early concerns about autism
April 15, 2015

A new analysis of a 2011 national survey finds that many parents of children with autism had their early concerns dismissed by their healthcare providers. In fact, they were more likely to have had their first concerns dismissed than were parents of children with other developmental delays, including intellectual disability.

This appears to have resulted in significant delays in autism diagnosis and treatment. The parents reported first raising concerns about possible autism symptoms when their children were around 2 years of age, on average. By contrast, their children’s average age of autism diagnosis was close to 5 years of age.

The findings appear online in the Journal of Pediatrics.

At the time of the 2011 Survey of Pathways to Diagnosis and Treatment, all the children were between the ages of 6 and 17. This included 1,420 children diagnosed with autism and 2,098 children with intellectual disability or another type of developmental delay.

“This research shows that a decade ago parents' concerns about possible autism were being dismissed without action far too often,” comments developmental pediatrician Paul Wang, Autism Speaks’ head of medical research. “Since then we have been actively engaged with the medical community to ensure this no longer happens.”

Since its founding in 2005, Autism Speaks has taken the lead in raising autism awareness both in North America and around the world. In 2013, the organization launched its “Early Access to Care” initiative to lower the age of autism diagnosis – with a special emphasis on underserved communities.

In addition, Autism Speaks Autism Treatment Network has played an active role in developing medical treatment guidelines and providing autism-education for pediatricians and other healthcare providers.

On the positive side, Dr. Wang notes, the new analysis shows that when physicians did act on parents' concerns, diagnoses were getting made earlier.

“We know that the earlier intervention gets started, the better the long- term outcome,” Dr. Wang emphasizes. Autism can be diagnosed as early as 18 months, and associated developmental delays can be identified and addressed even earlier.

“We continue to strongly support screening of all children for possible developmental problems including autism at their 12- and 18-month well-child checkups,” Dr. Wang adds. “We likewise urge healthcare providers to be proactive in helping families access early intervention therapies, special educational services and specialist care, as needed.”

Download Autism Speaks’ First Concern to Action Tool Kit here.

Learn about Early Access to Care resources for parents and caregivers here.

Learn about Early Access to Care resources for professionals here.

Learn about becoming an Early Access to Care community partner here.