Improving health care for kids with developmental disabilities

At OHSU’s Katharine Zuckerman Lab, we study public health to improve health care for children with long-term health problems. We focus on autism and other developmental disabilities that affect communication.

Our goal is to help all families get the developmental and behavioral services they need, especially those from marginalized communities. We identify barriers to quality care and find solutions that work for communities, families and kids.

In our research, we use community partnerships, surveys, interviews, focus groups, analysis of existing data, and community-based interventions to build these solutions.

Through our results, we shape both clinical practice and public policy. We have:

• Led projects to improve early intervention access
• Done foundational studies on disparities in autism diagnosis for Latino children
• Created bilingual tools and inclusive materials to reach more families
• Trained pediatric providers throughout Oregon and the U.S. in developmental and autism screening
• Mentored a diverse group of students and researchers who work on health equity issues

On this page you can:

• Learn about our research projects
• Find links to our publications
• Meet our team

LEAP: Limited English Proficiency and Family Experiences with Autism Project

Through the LEAP project, we seek to improve autism care and services for families who have difficulty speaking and understanding English. Research shows these families struggle to find care, share their concerns, access services and get to appointments. These issues are worse for children with autism.

We created a survey to learn what gaps these families face when seeking autism care. The survey is in English, Spanish, Simplified and Traditional Chinese, Kreyol, and Vietnamese. We plan to launch the survey at six sites in the fall of 2025.

The project is a partnership with UMass Chan Medical School, Northern Arizona University, Massachusetts General Hospital, and Children’s Hospital of Philadelphia. It is funded by the National Institute of Mental Health.

mHealth: Building better mobile autism screening tools

Mobile health tools are digital apps, often on a phone or tablet, that can assess health quickly and remotely. Tools that screen for autism could help families get care sooner. But it isn’t always easy for low-income or minority families to use these tools.

We are studying existing tools to learn how well they work for families. We are looking closely at features of each tool and collecting qualitative and quantitative user data from low-income and minority parents as well as community providers. We also interviewed tool developers to learn about the challenges in creating tools that work well for families.

We used the results of this research to create guidelines for mobile health autism screening tools that better meet underserved families’ needs. The project is funded by the National Institute of Mental Health.

OPT-In Early: Online training for parents of children with autism

OPT-In Early (Online Parent Training in Early Intervention) is an online training program for parents of children under 5 who may have autism. It helps parents and caregivers teach key skills and manage behavior that interferes with learning and socializing. It is very useful for families who are waiting for a diagnosis or professional support.

With funding from the National Institute of Mental Health, we are adapting the program to better support Latinx families. We are using focus groups and interviews for this work and translating the website into Spanish.  The project is a partnership with University of Connecticut and Connecticut Children’s Medical Center.

We have a grant from the Kuni Foundation to expand this work. The grant will allow us to adapt OPT-In Early to better serve rural Oregon families. We will conduct focus groups with rural families and interviews with rural health care professionals.

ASD3: Improving autism screening and early intervention

ASD3 stands for Addressing Structural Disparities in Autism Spectrum Disorder through Analysis of Secondary Data.

In this project, we are using data from the Medicaid program in all 50 U.S. states to understand disparities in quality and access to autism services. For example, we are studying which children have access to early autism diagnosis and which children have access to evidence-based services.

We are working with an advisory committee of parents and health and education professionals who will help us translate the findings into policy changes.  The project is a partnership with OHSU’s Center for Health Systems Effectiveness, SRI International and Northern Arizona University.

ASCEND: Addressing Structural Disparities for Children with Early Communication Disorders

This five-year project started in 2022 and is the first comprehensive, multi-state study of structural racism and discrimination in the early intervention system and communication disorder treatment.

Partners in six states that have federally funded Early Intervention programs started with a detailed literature review and a review of Early Intervention resource documents and websites for content and accessibility. Our findings led us to focus our analysis on the structural inequities we saw in child-level Early Intervention data.

Our next step is to survey Early Intervention care providers and leaders to better understand where and why these structural inequities happen. Then we will meet with project advisors to recommend practice and policy changes that could reduce structural racism for children with early communication disorders.

ASCEND is funded by the National Institute of Deafness and Communication Disorders.

Autism ALERT: Helping families get through the autism evaluation process

Autism ALERT supports families with kids up to age 4.5 who have a referral to a specialty clinic for autism evaluation. The program connects these families with autism family navigators who offer resources and guidance.

We successfully piloted Autism ALERT and have expanded the program to serve Oregon families in Multnomah, Clackamas and Washington counties. Families learn about Autism ALERT from their child’s primary care provider, and we contact families on autism evaluation clinic waitlists. The program serves families who speak English or Spanish no matter their insurance type.

The program is funded by the National Institute of Mental Health, CareOregon, and Health Share of Oregon.

Research partners

We are proud to work with partners at OHSU and beyond. 

• OHSU University Center for Excellence in Developmental Disabilities
• Oregon Office on Disability and Health
• Portland State University
• American Academy of Pediatrics
• University of Oregon
• UMASS Shriver Center
• University of Connecticut
• Connecticut Children's Medical Center
• Johns Hopkins University Center for Indigenous Health
• University of Nevada – Reno
• University of Minnesota
• SRI International
• Northern Arizona University
• National autism networks and policy groups

Publications

Find more publications by Dr. Katharine Zuckerman on PubMed.

The Latino School Readiness Gap: Engaging Families in Design Thinking for Primary Care Interventions

Academic Pediatrics 2025

Peterson JW, Carrasco VIU, Postigo M, Robles A, Reyes N, Stevenson E, Zuckerman KE

Predictors of Early Intervention Referral after a Positive Developmental Screen in Community Primary Care Clinics

Academic Pediatrics 2025

Solgi M, Calub C, Feryn A, Hoang A, Fombonne E, Matushak C, Bush A, Zuckerman KE

Toward More Equitable Care: A Closer Look at Autism Clinic Intake Practices and Paperwork

Journal of Developmental and Behavioral Pediatrics 2024

Srinivasan AP, Nishiguchi EP, Gonzalez C, Jimenez ME, Zuckerman KE, Lion KC

Considerations and Actionable Steps to Promote Scaling of Early Autism Diagnosis in Community Primary Care Practice

Journal of Developmental and Behavioral Pediatrics 2024

McNally Keehn R, Penner M, Shannon J, Sohl K, Weitzman C, Zuckerman KE

Educational Values of Latino Families Participating in a School Readiness Intervention: Hopes and Implications for Pediatrics

Journal of Developmental and Behavioral Pediatrics 2024

Peterson JW, Robles A, Underwood Carrasco VI, Zavala J, Almanzar N, Zuckerman KE, Bruce J

Provider perspectives on equity in use of mobile health autism screening tools

Autism: The International Journal of Research and Practice 2024

Zuckerman KE, Rivas Vazquez LA, Morales Santos Y, Fuchu P, Broder-Fingert S, Dolata JK, Bedrick S, Fernandez J, Fombonne E, Sanders BW

Meet the team

Katharine Zuckerman, M.D., M.P.H., FAAP, leads our lab. Dr. Zuckerman is a pediatrician and public health expert.  She is a professor and associate division head of general pediatrics at OHSU.

We invite learners of all cultural backgrounds, dis/abilities, sexual orientations and genders to join our inclusive lab environment. We value mentorship, inclusion and shared learning.

Students, learners and partners in our lab take part in research meetings, present at conferences and work directly with community partners. We celebrate each other’s successes and enjoy non-work outings like lab lunches and volunteer events.

Lab staff

Lab managers:

Luis Rivas Vazquez (Andy), senior research assistant, supports LEAP, mHealth and Opt-In Early. He manages work with the IRB as well as data, recruitment and bilingual material integration.

Veronica Underwood Carrasco (Vero), senior clinical research assistant, coordinates ASCEND and ASD3. She leads data analysis and supports our autism and early development research work.

Research assistants:

• Alessandra Armenta Lopez
• Galilea Estrada
• Yasmin Guzman
• Ava Lu
• Michelle Owens Reinitz
• Maya Postigo
• Alejandro Robles
• Gabriella Tangkilisan