How FAS DPN Turned Diagnosis into Practice

A Code, a Clinic, a Network: How FAS DPN Turned Diagnosis into Practice

FAS DPN built a diagnostic model that could travel from one UW clinic to communities across Washington and around the world.

A diagnosis can change the direction of care. For children and families affected by prenatal alcohol exposure, diagnosis can help explain learning, behavior, health, and developmental challenges that may otherwise be misunderstood. It can also help families, schools, clinicians, and service systems move from uncertainty to action.

That is the practical problem the Washington State Fetal Alcohol Syndrome Diagnostic & Prevention Network, known as FAS DPN, has worked to address for more than 30 years. Based at the University of Washington Institute on Human Development and Disability, FAS DPN began as a single CDC-sponsored UW clinic in 1993 and expanded into a legislative-supported statewide network of clinics in 1995.

Today, the FAS DPN is a clinical, research and training program focused on diagnosis, intervention, prevention, training, and public health policy. Its work supports individuals and families while also helping communities build the capacity to recognize and respond to fetal alcohol spectrum disorders.

Susan J. (Astley) Hemingway, PhD, professor of epidemiology and pediatrics and director of FAS DPN at the Institute on Human Development and Disability, has been central to this work. Hemingway’s contributions include the development and dissemination of the FASD 4-Digit Diagnostic Code, the FASD 4-Digit Diagnostic Code Online Course, the FAS Facial Photographic Analysis Software, Lip-Philtrum Guides and a broader diagnostic training model used by teams far beyond Washington.

The FAS DPN’s statewide history includes an important public policy story. In 1995, Andrea McNamara, JD, helped develop Senate Bill 5688, which expanded the single UW clinic into a statewide network of FASD clinics. McNamara trained as an environmental lawyer and was a graduate of the University of Washington School of Law. Her role shows how the FASD story at UW crossed disciplines from medicine and psychology to law, public health, and policy.

The statewide model mattered because FASD diagnosis requires specialized, interdisciplinary expertise. A single clinic cannot meet the full demand alone. The FAS DPN’s network approach allowed the UW team to develop a diagnostic model, train interdisciplinary teams, and support communities beyond Seattle.

At the center of FAS DPN’s diagnostic work is the FASD 4-Digit Diagnostic Code. Developed by FAS DPN in 1997, the Code provides an evidence-based method for diagnosing the full spectrum of outcomes associated with prenatal alcohol exposure. The Code ranks four key diagnostic features: growth deficiency, the FAS facial features, brain structural and functional abnormalities, and prenatal alcohol exposure.

Each feature is ranked independently, which helps clinicians describe the pattern of strengths, needs, and exposure history more precisely. This approach gives families and providers more than a label. It gives them a structured way to understand the person’s profile and plan supports.

The Code is designed for interdisciplinary use. The UW FAS DPN diagnostic team includes professionals from medicine, psychology, occupational therapy, speech-language pathology, social work, family advocacy, and public health. Together, the team reviews records, evaluates development and function, assesses diagnostic features, and provides individualized intervention recommendations.

For families, the goal is not diagnosis for its own sake. The goal is a better understanding of needs and a practical plan. FAS DPN evaluations provide treatment planning across medical, mental health, education, vocational and social service needs. For many families, the evaluation can validate long-standing concerns and point toward services that better match the person’s brain-based challenges.

The FAS DPN has also developed and shared diagnostic manuals, lip-philtrum guides, the FAS Facial Photographic Analysis Software, training materials, the FASD 4-Digit Diagnostic Code Online Course and clinical/research databases. These tools help professionals learn a consistent, evidence-based approach to FASD diagnosis and apply it in their own communities.

The scale of dissemination is substantial. The FAS DPN reports that more than 3,000 professionals from 62 countries have completed the FASD 4-Digit Diagnostic Code Online Course; more than 3,000 facial photographic analysis software licenses have been distributed across 62 countries; and more than 200 FASD diagnostic clinical teams have been trained worldwide. The FAS DPN has also diagnosed more than 3,000 patients over more than three decades of work.

The FAS DPN’s impact is clinical, educational, and structural. The program diagnoses individuals, trains professionals, creates tools, supports state reporting, and helps public systems understand what accurate diagnosis makes possible.

FAS DPN also built infrastructure to carry research into community practice over decades. It turned a clinic into a network, a diagnostic method into a training model and research evidence into practical tools for families and professionals.