FASD diagnosis can be complicated because brain function is complicated. Getting an FASD diagnosis is not meant to ‘label’ the person. Rather the process of the diagnosis, especially when using a team of professionals, can be a journey to discover the person’s strengths and areas of challenge so that the person and those who work and live with them can understand how to help them function better and succeed. Receiving an FASD diagnosis before the age of 6 is considered to be a ‘protective factor’ in terms of how someone may do over time but there is no bad time to receive an evaluation and diagnosis.
A team approach is often recommended for diagnosis because there are many areas of the brain that may have been impacted by the prenatal alcohol exposure (PAE). The team may include a medical provider (physician, nurse practitioner, or physician assistant), psychologist or neuropsychologist, speech language pathologist, and occupational and/or physical therapist. Common areas (domains) of impact include:
- Executive Function (difficulty with planning/organizing, initiating, shifting, self-monitoring, working memory, emotional control, inflexible thinking)
- Adaptive Living (difficulty with skills similar to same-age peers; may include social, self-care, safety, other skills needed for independence such as understanding money, time, etc.)
- Communication (receptive, expressive and social/pragmatic)
- Attention (easily distractible-might be related to sensory issues, not true ADHD)
- Memory (short & long term, may have problem with auditory or visual memory)
- Coordination (gross and/or fine motor skills, visual motor skills)
- Sensory (any part of the sensory system may be impacted- visual, auditory, textures on skin or in mouth, have a need for big movements, etc.)
- Cognitive (intellectual ability or IQ may be in ‘average’ range but cannot reliably use their abilities)
- Academic Achievement (particular difficulties in math, reading comprehension)
- Behavior/Mental Health (emotional self-regulation issues, may have anxiety/depression if not receiving correct supports, at risk for substance/alcohol use)
We recommend that professionals who are doing FASD evaluations also have an understanding of the impact of trauma on the brain as this can mask or further complicate how someone may be functioning. If effective trauma therapy is provided, their function in a specific area may improve significantly. If it is an underlying neural pathway ‘disconnect’ related to prenatal alcohol exposure the disability will be long term but can also respond to treatment interventions. That is because the therapies (speech, occupational therapy, mental health and other) help to create new neural pathways to create ‘work arounds’ for the brain. Improvement can definitely be demonstrated with correctly targeted therapies!
The world’s researchers are working hard to develop enough information about FASD so that in the future there will be consensus about one ‘best’ way to make a diagnosis. In the meantime, we have several options. Alaska FASD Diagnostic Teams and the Southcentral Foundation Child and Family Developmental Services use the University of Washington 4 Digit Code system.
Dr. Susan Astley Hemingway at the University of Washington recently published an analysis of her dataset in Comparison of the 4-Digit Code, Canadian 2015, Australian 2016 and Hoyme 2016 fetal alcohol spectrum disorder diagnostic guidelines that is an interesting read for those who want more details about the pros and cons of various diagnosis strategies.
One final important point, it is NEVER too late to consider seeking a diagnosis! As our colleague and board member, Gina Schumaker, will tell you it can provide information that helps with self-understanding and forgiveness. We are often our own worst critics. Check out her video here.
For adults interested in an FASD evaluation we recommend a neuropsychology evaluation and, if possible, a speech language pathology assessment that includes social language testing. Contact us for more details or call us at 907-249-6641