Key Considerations for Medical Providers
Fetal Alcohol Spectrum Disorders (FASD) are a range of disabilities that are usually NOT evident at birth and that reveal themselves over time depending on how a specific child has been impacted from the prenatal alcohol exposure. As a result, screening for evidence of prenatal alcohol exposure is not simple and we know from current research being conducted by Dr. Ira Chasnoff (NTI Upstream) that the usual developmental screening tools (such as ASQ-3 or Ages & Stages Questionnaires) will often NOT pick up children who are having difficulties related to their prenatal exposure. They may NOT have developmental delays. BUT young (under age 5) children with prenatal alcohol exposure are likely to have difficulty with self-regulation, sensory integration, cognitive/learning/memory, and adaptive living skills (as compared to their peers).
Because the clinical presentation can be difficult, it is imperative that we embrace the idea of routine alcohol screening across multiple health care settings so that the information about prenatal alcohol exposure (even that prior to pregnancy recognition) is captured in the records (prenatal, birth, and pediatric) for use in differential diagnosis in the future.
FASD prevention efforts exist on at least 3 levels. Primary prevention involves work to eliminate alcohol consumption during pregnancy and reduce new exposures. Secondary prevention involves helping those individuals who may be affected that require early intervention, diagnostic, and special educational services. Tertiary prevention involves support across the lifespan, including transition from K-12 schools to adult life, supported employment, independent living, and improved interactions with criminal justice systems. We at the Alaska Center for FASD engage work in all areas of prevention to support individuals in their communities of choice across the lifespan.
Let’s think about the life continuum and potential changes the health care system can make to become more FASD-informed…
Women's Healthcare Providers
Women’s health care providers (obstetricians, family medicine, midwives, nurse practitioners, others) are the ‘first responders’ in the world of FASD. If routine alcohol screening and brief intervention were used across practices in Alaska, the conversations about alcohol use/at-risk alcohol use would be normalized and could help to reduce the stigma that interferes with FASD prevention efforts. Use of a tool like the AUDIT-U.S. is validated down to age 12 and not only captures information about quantity & frequency of alcohol use but has questions that are triggered (as indicated) to determine if the level of alcohol use falls into a more risky or high risk area that would benefit from referral to treatment. Because this tool gives the provider (and the patient) a numerical score for their use, it allows for comparison purposes at future visits. Use of visual charts/graphs can help to make the conversation a ‘visual’ one for the patient. Combining routine alcohol screening with a simple question “Do you want to be pregnant in the next year?” can open the conversation about the type/effectiveness of current birth control use and whether a woman* has an interest in either a) changing how she* is using alcohol or b) changing (or starting) a birth control product. CDC’s Project CHOICES has demonstrated that this type of strategy works! Finally, don’t forget that the male* partner plays a role in her* drinking…a good resource for ideas about how men can prevent FASD is here.
Health care providers can have a powerful influence on their patients. By using a nonjudgmental, concerned manner and practicing simple brief intervention conversations they can ‘plant seeds’ for potential behavior change in the patient. See Lets Talk FASD section of this website for more detailed information and resources and/or contact us OR call 907-249-6641 to arrange for training.
Based on conversations with women* who are pregnant in Alaska, we know that routine alcohol screening is NOT being conducted across prenatal care providers. This needs to change as evidence suggests that women* do not mind being asked about their drinking (especially in the context of a pregnancy visit and risk assessment). In addition, prenatal providers need to be very consistent about the message they give women* about alcohol use in pregnancy. Patients are seeking and finding information from multiple sources during pregnancy and there are many that do not have current or correct information. There are studies that are looking at the impact of ‘moderate’ drinking on children whose mothers continued to drink. However, most of these studies did not assess the wide range of domains that are impacted (particularly executive function & adaptive living) or did not follow the children long enough so that the impact could reveal itself. Alcohol is a well-studied teratogen that can cause harm ‘before pregnancy recognition’ up through the last trimester. It is important to tell women* that the baby’s blood alcohol level is the same (or higher) than mom’s. Considering that the baby has a considerably smaller body size, this one drink DOES matter and is not recommended. Per current CDC recommendations we continue to urge providers to be clear with their patients that there is No Safe Type, No Safe Time, and No Safe Amount of alcohol during pregnancy.
Multiple health professional organizations have adopted position statements that indicate no alcohol use in pregnancy is recommended. The American College of Obstetricians & Gynecologists (ACOG) has developed nice tools for use by OB/GYN providers as have Nurse Practitioners in Women’s Health (NPWH) and the American College of Nurse-Midwives (ACNM) two nurse practitioner/nurse midwifery organizations.
Finally, noting that alcohol exposure occurred during the pregnancy, even before pregnancy recognition, in the prenatal record problem risk list could be one strategy that would help the pediatric community as they follow children and begin to wonder what variables might be influencing the difficulties being seen. Neonatal risk factors are transferred from mother’s chart to baby’s routinely. Alcohol exposure should be included in this information. ACOG has recommendations related to ICD 10 Codes that could be used for this purpose in noting prenatal alcohol exposure routinely in the prenatal problem list or newborn record. Alaska is not a state with a punitive regulatory environment related to women who have consumed alcohol during pregnancy.
Pediatric providers can be at a distinct disadvantage if they do not have the history regarding prenatal alcohol exposure. The American Academy of Pediatrics is a partner organization in the CDC Collaborative for Alcohol Free Pregnancy and has excellent resources and a toolkit that helps providers have the conversation with all of their incoming patients.
Alcohol is a teratogen and can be the reason for several physical anomalies including: classic facial features of FAS (small eye openings, flat vertical groove between upper lip & under nose, thin upper lip), structural brain defects (small head size or reduced corpus callosum), musculoskeletal conditions (scoliosis, pectus excavatum, joint deformities & laxity), oral/dental (small lower jaw, crowded teeth, propensity for dental cavities), kidney abnormalities, auditory/hearing system defects, cardiac/heart defects, and other anomalies. Consideration should be given for possible prenatal alcohol exposure when children are seen with these defects.
It is important to note that symptoms of FASD may be similar to those for other conditions such as autism, ADHD, and bipolar disorder to name a few. If the alcohol story is unknown, then consideration of the brain-based underlying reason for the symptoms may not be considered and, most importantly, the child may not receive interventions that best match what they need. It is critical that we all work to de-stigmatize prenatal alcohol exposure and possible FASD (both for birth mothers and their children) as it is a likely common occurrence in health care practices.
Some children with FASD do relatively well until they reach late elementary or middle school when the executive function and social skills demands and expectations for more independent life skills increase. There is no bad time to seek an FASD diagnosis. Self-advocates will tell you they ‘feel’ something is up long before they receive a diagnosis. Having the information provided by an FASD assessment can be a relief for the child as they may believe that things are “their fault” and that they are “stupid”. Preventing the negative mental health consequences of misdiagnosis and misunderstanding their needs is a huge role that pediatric providers can play in the FASD-informed care continuum.
For ideas about resources to share with families go to the FASD Basics-Resources & Research section of this website.
Many individuals with FASD may reach adulthood without having received a diagnosis. We know from research conducted at the University of Washington that better long-term outcomes are associated with: FASD diagnosis before age 6, supportive and stable home environments for most of their life, protection from violence, and appropriate services and interventions.
Many adults with FASD are ‘making it on their own’ without the supports they need. As a result they may be struggling to maintain relationships and employment, miss important medical or other appointments, connect with those who may not have their best interest in mind (because they don’t ‘read’ situations well but need someone to be their ‘external brain’), have mental health conditions, and get in trouble with the child protection or legal systems. They are struggling because they can’t do things not, in general, because they won’t do things. Understanding that someone has an underlying reason for the odd or repetitively negative behaviors that may be seen is critically important.
Researchers are beginning to learn more about how the prenatal alcohol exposure may be altering inflammatory systems in the brain/body so that an individual with an FASD may experience chronic health conditions (potentially at earlier than expected ages).
The health care provider for an adult who may have an FASD can provide a great service by making a referral for neuropsychology evaluation for the person at any age. Depending on the results of the evaluation, the adult may qualify for support services, and at minimum, they will have information that helps them to understand themselves better. Based on our conversations with adults who have an FASD, that alone can result in a more self-forgiving life journey.
For information about things that help adults with FASD go here.
The Alaska Center for FASD acknowledges that not every person who can become pregnant identifies as a woman. Although we try to use gender-neutral language as often as possible, much of the current research available currently refers only to “women” when discussing the ability to become pregnant. When citing research, we refer to the language used in the study. In these cases, “woman” refers to someone who was assigned female at birth.