Autism Speaks funds ECHO Autism Primary Care to bring better autism screening and care to your doctor’s office

NEW YORK -- Primary care providers are just that – trained to be the first stop for patients to get treatment for the most common illnesses. And, a sore throat or a fever might be an easy symptom to identify with a typical toddler.

But what happens when parents bring their kids to the doctor because they are playing with their toys in a way that seems unusual or has lost words they used to know?

For Alicia Curran, what happened is fairly common for people who can’t get to larger hospital systems and academic medical centers for care. When she told her family doctor in rural Missouri that her 2-year-old son, Sam, didn’t look at her when she called his name, and that he turned his toy cars over to spin their wheels instead of racing them, her provider didn’t have the autism expertise necessary to provide much guidance. Instead, her doctor made a referral to a specialist.

He didn’t recognize that these are common early signs of autism. Early identification is critical to starting early treatment and better quality of life as children with autism get older.

Autism specialists and researchers with Autism Speaks’ Autism Treatment Network are working together with families and providers to get early identification and better autism care into the hands of our primary care providers with the ECHO Autism Primary Care program.

ECHO Autism Primary Care is a virtual learning program where primary care providers (PCPs) get guidance from autism experts on best practices in autism screening, identification, and medical care.

“Most primary care physicians and practitioners get little or no training in how to reliably identify autism or manage common medical problems in children with autism,” says Kristin Sohl, M.D., executive director of ECHO Autism and a pediatrician who specializes in autism at University of Missouri Health Care. “Whether the provider is unsure when or how to screen a child for autism or needs to know how to look for medical conditions in a child with communication barriers, our ECHO Autism Primary Care team can give them the tools and guidance to care for their patients who have autism.”

Providers join a scheduled virtual clinic, where the expert team shares knowledge and resources, allowing PCPs to increase their autism expertise. This includes reinforcing the American Academy of Pediatrics (AAP) guidelines on use of global developmental and autism screening tools.  Additionally, experts coach and mentor providers to manage the most common medical and psychiatric conditions that affect children with autism, and discuss how they can affect the child’s behavior, learning and relationships.

Each clinic features one individual provider who presents a case to the group, and everyone participating in the clinic gets the benefit of learning from that real case.

“It’s a lot like the learning model in medical school,” Dr. Sohl says. “A group of providers – including experts in developmental medicine, behavioral health, and social work, plus a family advocate – talk about what is happening with a patient. Everyone attending the ECHO Autism clinic can learn from that example what to do if they see that kind of issue in the future.”

ECHO Autism is even more than the typical medical school education model because it includes the family/caregiver perspective.

“Families and caregivers are essential members of the health care team for people with autism,” says Donna Murray, Vice President of Clinical Programs at Autism Speaks. This department oversees the daily activities of the Autism Treatment Network, a group of 12 autism centers across North America. “Our ECHO Autism Primary Care sites include family/caregiver expert team members, because we know their insight on daily living issues is invaluable when providers are considering what to do to help a child and the whole family.”

Now, all 12 ATN centers have ECHO Autism Primary Care groups operating or planned in their local areas, most with support from Autism Speaks.  

The ECHO Autism Primary Care model was originally tested at the University of Missouri, an ATN site where Curran is now ECHO Autism’s Director of Operations and grant manager for Autism Speaks Autism Learning Health Network. Autism Speaks also funds Missouri’s leadership of ECHO Autism in the Autism Treatment Network in conjunction with the federal Health Resources and Services Administration through the Autism Intervention Research Network on Physical Health (AIR-P).

By combining a family perspective with the reach of community providers and the guidance of autism experts, ECHO Autism Primary Care helps communities be better prepared to care for people with autism, no matter where they live.

Sam is now 18 and sees a PCP who is helping guide him into the world of adult health care. For Curran’s family, that relationship with a provider in their home community is central to the success of programs like ECHO Autism Primary Care.

“When your family doctor knows how to care for your child with autism, it makes a world of difference,” says Curran. “I am thankful that the ECHO Autism Program allows families to access high-quality care from the local experts they trust, so that they do not have to wait to see a specialist. We all win.”