What is FASD-informed Care?

Fetal Alcohol Syndrome (FAS) was first identified in the U.S. at the University of Washington in the late 1960’s.  Researchers identified a pattern of small growth, facial feature differences, and brain-based developmental changes in the children of women who had consumed alcohol during their pregnancies. As more research was completed it became clear that FAS was not the only impact of prenatal alcohol exposure (PAE) and that there were others who had significant impacts that were more ‘hidden’. Initially this phenomenon was referred to as Fetal Alcohol Effects (FAE) but over time we have come to understand that PAE can result in a wide spectrum of impacts that we now refer to as Fetal Alcohol Spectrum Disorders (FASD).  Despite over 50 years’ of work, in the U.S. and all over the world, there is still not complete international agreement on FASD diagnostic criteria but we’re getting closer.  Neurobehavioral Disorder Associated with Prenatal Alcohol Exposure (ND-PAE) is now in the appendix of the DSM-V (the American Psychiatric Association diagnosis definitions) for use by the behavioral health community and this creates more access to diagnosis.  And while stigma still reigns as a huge influence that interferes with successful efforts in prevention, treatments, and lifelong support, more stories are being shared to move this primarily ‘hidden’ disability into full view.

We are getting better at clearly identifying what works and what individuals with FASD need for services and support.  In 2015, Dr. Heather Carmichael Olson (University of Washington), one of the researchers involved with the original Families Moving Forward program made a good argument for increasing access to FASD diagnosis and what is needed to truly have FASD-informed care.

As recently summarized by Dr. Christie Petrenko (a researcher developing the Families Moving Forward Connect app)

FASD-informed care attributes include:

  • ASK questions about prenatal alcohol exposure routinely
  • ACT to promote prevention of prenatal alcohol exposure
  • DIAGNOSE those who have had prenatal alcohol exposure (the earlier in life the better) using either ND- PAE OR seek the evaluation of a multi-disciplinary team process
  • PROTECT those who may be at risk for maltreatment and promote protective factors
  • SUPPORT caregivers & connect them with each other and advocacy groups
  • REFRAME to educate self, caregivers & other providers about FASD and consider neurodevelopmental deficits in treatment and education planning
  • ACCOMMODATIONS can be provided to modify the environment which includes: caregiver, education, recreation, corrections & criminal justice, job & other settings AND modify expectations and treatment (take longer, move slower, be more concrete & experiential)
  • BRAINSTORM- regarding use of positive behavior supports, readiness to change, and motivational interviewing
  • BUILD SKILLS to help control arousal, build self-regulation, and other specific skills as needed (i.e. social communication, memory, safety etc.)
  • ADOPT HOPE as a guiding principle to promote success for all

We think that this framework helps to break the pieces of the puzzle into manageable steps to move toward better prevention and improving care and the lives of individuals who are experiencing an FASD and their families. Help us to make history in Alaska as we promote work in each of these puzzle piece areas and re-design the big picture!