Communication and Referral Tips

The Language of FASD

A nonjudgmental communication style that includes non-stigmatizing language is a best practice in all interactions among health-care providers, patients and their families.

Individuals who have children with FASD may be concerned about being judged and criticized.
They may be reluctant to discuss prenatal alcohol exposure.

Health-care providers can establish a bond of trust that makes families feel safe. Sensitivity and understanding are essential communication tools.

Children living with FASD and their families do not benefit from being defined by the disability. Instead, inclusive communication provides a space to thrive by allowing dignity and providing encouragement.

Gathering the Prenatal History

Health-care providers who treat young children and provide preventive medical checkups have a key opportunity to identify children exposed to alcohol. Taking time to build a rapport with a child’s parents or caregivers establishes bonds of trust and shared interest in helping children achieve and maintain good health.

Gathering a full prenatal history allows the clinician to evaluate a child’s overall health and to help determine whether FASD is present. A complete prenatal history includes information about alcohol exposure during pregnancy.

Some individuals may not report alcohol use during pregnancy for a variety of reasons, including inaccurate or incomplete recall, avoidance of stigma and concern that their child may be taken from them. If the birth mother is unavailable or does not have custody of the child, family members or other caregivers may provide a prenatal history. In some cases, the history of alcohol use during pregnancy will be unknown.

A prenatal history includes information from these questions:

How many months into pregnancy was the individual before learning they were pregnant?
Did the individual drink alcohol before learning they were pregnant?
- If yes, how much and how often?
Did the individual use alcohol during the pregnancy?

Improving Conversations with Motivational Interviewing

Motivational interviewing can help providers gather key information about prenatal alcohol exposure and prompt a pregnant individual to consider fully how the use of alcohol affects the unborn child. Guide the conversation with open-ended questions, reflective listening and a nonjudgmental manner, all which allow a pregnant person to explore thoughts and feelings about alcohol use. During the conversation, provide facts about the effects of prenatal alcohol exposure on the developing child and encourage alcohol abstinence during pregnancy.

Communicating with parents of a child with suspected or confirmed FASD calls for sensitivity and understanding. Keep all lines of communication and advocacy open as the child’s care is coordinated through the medical home, and reaffirm that the mother is a key member of the child’s care team.

Address the emotions and concerns of the pregnant person who engaged in social or binge drinking before becoming aware of the pregnancy. That includes supporting a decision to quit using alcohol when they did because their abstinence choice, whenever it occurred, offered protection for the unborn baby.

If a pregnant person has an alcohol use disorder, acknowledge the problem and refer them for treatment as appropriate. Referrals can be made to their local mental health authority. FASD United offers Circle of Hope, a mentoring network for pregnant persons who used alcohol while pregnant.

Provider Resources: Communication

In the Resources, you can access:

AAP’s Communication Strategies: Motivational Interviewing
Texas Department of State Health Services: A list of local mental health authorities, also known as community mental health centers
FASD United Circle of Hope

Referral Resources for Children with FASD

Proper treatment of FASD requires the expertise of a multidisciplinary health-care team. Specialists who can help diagnose, treat and manage the care of a child with FASD include:

Developmental pediatricians
Educators
Geneticists
Mental health professionals
Neurologists
Nutritionists
Physical and occupational therapists
Speech-language pathologists

Primary care clinicians continue to provide care coordination through the medical home. “The pediatric medical home coordinates and facilitates all aspects of comprehensive and continuing patient care, including referrals, educational services, health care specialists and community partners” (AAP, 2023).

Six-year-old Mila is a kindergartener new to your practice. Tanya, her birth mother, reports that Mila has trouble remembering her letters, simple math facts and the names of shapes. Last year Mila disrupted her pre-K class with impulsive behavior, and she has trouble maintaining friendships. During the exam, you note Mila’s small head size and the characteristic facial dysmorphia present in some disorders of FASD.

Here are recommended next steps:

Ask Tanya about prenatal alcohol use, maintaining a nonjudgmental demeanor. Tanya reports drinking wine and beer on a weekly basis throughout her pregnancy. She reports that she has been sober for the past three years.

Your empathetic approach and encouragement of Tanya’s sobriety allow her to express her anxiety about Mila’s difficulties in school.

Explain FASD and how Mila’s facial features, learning difficulties and behavioral issues meet the criteria for a disorder on the spectrum.

Complete a school district form to document Mila’s disability so she can receive special education services, including evaluation for speech/language and occupational therapies.

Provide Tanya with contact information for organizations that help families living with FASD, such as Navigate Life Texas and FASD United.

No reporting on your part is required, such as to the Texas Department of Family and Protective Services (DFPS), because there is no suspicion Mila is being abused or neglected by her family.

Jeffrey brings two-year-old Nate to your clinic because he worries his son “is acting like he is autistic.” Jeffrey adopted Nate after the baby was placed in state conservatorship shortly after birth. Nate’s birth mother tested positive for cocaine during pregnancy, but prenatal alcohol use wasn’t confirmed.

Nate’s medical history shows he was preterm, weighing 4 pounds, 15 ounces. He is small for his age, and his head circumference is in the 2nd percentile. Nate’s facial features are characteristic of FASD. He has a good appetite but has trouble falling asleep and staying asleep. Nate is prone to tantrums and exhibits aggressive behavior toward other children and family members, according to Jeffrey.

You use the M-CHAT-R/F to screen Nate for autism spectrum disorder (ASD), as recommended by Texas Health Steps, and record a score of 2, which places him at low risk for ASD.

Here are recommended next steps:

Explain to Jeffrey that Nate does not meet the criteria for ASD. Rather, his facial dysmorphia, physical features and behavioral issues point to a disorder on the fetal alcohol spectrum, even without documentation of prenatal exposure to alcohol.

Reassure Jeffrey that as Nate’s medical home provider, your practice will coordinate referrals and provide resources his family.

Refer Nate to ECI as legally required for children from birth to age 35 months.

Refer Nate for speech therapy and occupational therapy.

Provide Jeffrey with contact information for organizations that help families living with FASD, such as Navigate Life Texas and FASD United.

Provider Resources: Assessment for FASD