On April 2015 Kathy Crissey and I had the opportunity to attend a training on Fetal Alcohol Spectrum Disorder (FASD) put on by ECCPASA, March of Dimes and Northpointe Council. Dr. Luther K. Robinson and Christie Petrenko Ph.D. were the two keynote speakers. We learned quite a bit and thought we might share some of our notes.
Dr. Luther Robinson is the Director of the Special Diagnostic Program at Women and Children’s Hospital of Buffalo. The program assesses individuals who have been exposed to alcohol or other harmful agents, and makes recommendations and referrals where indicated.
Dr. Christie Petrenko is a Research Associate at the Mt. Hope Family Center/ University of Rochester. She is also one of the Directors of the FASD Diagnostic and Evaluation Clinic, which is one of two multidisciplinary clinics in the state of New York.
Here are a few takeaways from the session:
20% of pregnant American women drink alcohol, 2-3% drink at “at risk” levels. At-risk levels are defined as either 7 drinks a week or 3-4 on one occasion. 7%-10% of children born to women who are alcohol dependent have FAS.
The potential impact on infants from a physical perspective appears to be more significant when the woman who is pregnant is older. This is thought to be related to the way the body metabolizes alcohol as we age.
Advances in research can impact the lives of individuals affected by fetal alcohol spectrum disorders. Fetal alcohol spectrum disorder is both a clinical and a medical diagnosis. The diagnosis is a clinical exercise. When you have a child with FAS you should ideally have a ‘team’ of support to include parents, teachers, physicians, occupational therapists, physical therapists, nutritionists, psychologists, audiologists, speech and language pathologists and social workers. Most communities are unable to support this type of multidisciplinary team.
Many professionals are uncomfortable with bringing up the subject of alcohol and pregnancy. They are afraid it will make the client upset and drive them away. The data shows that encouraging clients/patients makes a difference. FAS is 100% preventable and all professionals need to find ways to comfortably address this with their clients/patients.
Dr. Christie Petrenko has done, and continues to do, some fascinating research into FASD. One area she has worked on is delineating the differences between ADHD and FASD. She has drilled down many of the differences but summarized the global difference by noting that those affected with FASD have trouble with transitions or shifting attention from one thing to the next. Similarly, those affected with ADHD have trouble focusing and sustaining their attention on one thing.
She highlighted five protective factors for those diagnosed with FAS or FASD which include: diagnosis before age 6, correct diagnosis, never experiencing violence, receiving developmental disabilities services and a living in a stable/nurturing home.
Dr. Petrenko did a study that aimed to identify the types of interventions that would be most acceptable and helpful for individuals with FASD and their families to prevent or reduce secondary conditions. Here are three notable findings:
- Program characteristics for preventive interventions need to be: available across the lifespan, proactive/prevention focused, individualized, comprehensive, coordinated across systems and developmental stages.
- Challenges for parents include: stress/frustration, limited resources, knowledge of FASD, isolation/stigma, constant supervision, sadness at seeing child struggle, worry about the future, more than expected.
- Assets for parents include: devotion to child, patience, persistence, advocacy, problem solving, being resourceful and receptive to learning/interventions.
Dr. Petrenko then created an integrated intervention program called Families on Track whose overarching goal is to prevent the onset or severity of secondary conditions in individuals with FASD.
Several parents were present on a panel to talk about the challenges of raising a child with FAS/FASD and the difficulties of obtaining services and support. All of these parents expressed the need for ongoing involvement with their children well into adulthood and felt that the availability of a support group for them was essential in helping them to effectively find services and share information.