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Simple changes can make primary care environment conducive for kids with autism

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Editor's note: There has been a change in faculty members for this session. Jennifer Walton, M.D., M.P.H., FAAP, will present the session from 3-4:30 p.m. PDT on Friday. Adiaha Spinks-Franklin, M.D., M.P.H., FAAP, will present the session from 4-5:30 p.m. PDT on Saturday. Katharine E. Zuckerman, M.D., M.P.H., FAAP, no longer is presenting this session.

As the rate of children diagnosed with autism increases, so does the likelihood a pediatrician will be tasked with caring for multiple patients with unique needs.

One in 44 U.S. children has autism — up from one in 150 children in 2000, according to the Centers for Disease Control and Prevention. As such, it is becoming more important for health care providers to tailor visits to meet patient’s individual needs.

“It’s not that hard to make simple changes to a primary care environment to make visits more comfortable for kids, and parents can often tell us what is going to be the most important thing for them,” said Katharine E. Zuckerman, M.D., M.P.H., FAAP, a member of the AAP Council on Children with Disabilities Executive Committee. “It’s especially important for kids with autism because there’s so much about the way we do primary care that’s uncomfortable for them.”

Dr. Zuckerman will lead the interactive workshop “Building Blocks to Create Medical Homes for Children with Autism, Intellectual Disability,” focusing on what is “feasible and doable” in a primary care setting to make the environment more comfortable for children on the autism spectrum. The workshop will be held from 3-4:30 p.m. PDT Friday, Oct. 7 (I1240) in room 205 of the convention center and from 4-5:30 p.m. PDT  Saturday, Oct. 8 (I2643) in room 207CD.

“Primary care is an environment with all these people in it, and people are touching your body. They have all these invasive lights and sounds, and it’s not surprising that kids on the spectrum get really distressed by it,” said Dr. Zuckerman, associate professor at Oregon Health & Science University.

The workshop will include small group exercises that will include cases many providers likely have seen in their clinical practices.

Dr. Zuckerman said she has spent her career helping primary care physicians and specialists, like developmental pediatricians, improve equity and quality of care for their patients. She also has worked with state early intervention programs and families to help meet the needs of children with autism.

“As a primary care physician, I got really frustrated that the care for these kids was so inequitable and difficult to access, and it was frustrating for me and for those families that I care for,” Dr. Zuckerman said. “So I started working on solutions to make care better.”

Dr. Zuckerman said she will encourage health care professionals to work hand-in-hand with parents and guardians to ensure the best possible care for their children.

“Parents really are the experts on their children with disabilities, and asking parents to lend their expertise and to collaborate with them on what they think is best for their child is the recipe for success,” Dr. Zuckerman said. “It’s really about being ready and having a plan. I don’t expect people to be an expert on this topic. I know we’re all doing the best we can, and it’s really hard to provide high-quality care for these kinds of socially and medically complex kids in that fast-paced primary care practice environment.”

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