The Misunderstood and Underdiagnosed Condition of Fetal Alcohol Spectrum Disorders
By Elizabeth Cleveland, PhD, CCC-SLP and David Deere, MSW, MTh
The prevalence of fetal alcohol spectrum disorders (FASD) is roughly 1 in 20 individuals. Less than 1% of those individuals are identified and diagnosed, leading to a vast misunderstanding of behaviors and symptoms. As an umbrella term, FASD categorizes a variety of disorders caused by prenatal alcohol exposure that can happen at any time during a pregnancy, including before a parent finds out they are pregnant. Individuals with FASD have many strengths and with the right intervention and supports, can be fully successful in all areas of life. However, these individuals often have difficulty with many areas of thinking and adaptation and can fall through the cracks of society easily if not identified.
Jerome is a very outgoing little nine-year-old boy who is struggling in third grade. He reads at the first-grade level and his math skills are at the kindergarten level. He becomes easily distracted during lessons and his teacher sends him to the principle’s office frequently because “he won’t sit still and he can’t keep his hands to himself.” Jerome’s mom reports that simple, routine instructions like, “get dressed,” are difficult for him. He needs constant supervision because he does not think before he does something. When he gets home after a hard day at school, his mother reports that he is on edge and can be very emotional. Occasionally he will get so upset that he breaks his toys. He has no best friends because, although he is not shy, he cannot maintain friendships. Jerome had prenatal alcohol exposure. He has an FASD.
Sarah is a tiny two-month-old girl. She has spent her short life being seen by specialists for feeding and weight gain. Sarah was born at 39 weeks, but only at the third percentile for height and the fourth percentile for weight. She has a diagnosis of microcephaly and has strange looking facial features. Sarah’s mother is an alcoholic and did not get support during her pregnancy. Sarah had prenatal alcohol exposure. She has an FASD.
Billy is a 25-year-old man. He lives at home with his parents and has never been able to maintain a job for more than four months, despite trying multiple times. Billy reports that he often feels sad and lonely because he feels “different” than everyone else. He had a hard time in school when he was younger and still needs help following multi-step directions. His anxiety can be debilitating, which makes him want to stay home instead of attempting another job. His parents report that he would not be able to live on his own without someone checking up on him multiple times a day. His bedroom is a mess, he does not seem to understand the concepts of time or money, and he needs reminders to take showers. His mother reports that when she was pregnant her doctor told her than she was too anxious and that she should have a glass of red wine every evening. She followed the doctor’s instructions. Billy has an FASD.
Miracle is a sweet 12-year-old girl that was adopted from Russia with her twin brother, Russell. Miracle has an intellectual disability and has been placed in a self-contained classroom at her school. She has been diagnosed with ADHD and an impulse disorder. Miracle receives services for speech, occupational, r and physical therapies. Russell receives special classes for reading and math but does not have an intellectual disability. He also has a diagnosis of ADHD and impulse disorder. He also has a diagnosis of Oppositional Defiant Disorder and Disruptive Mood Dysregulation Disorder. Both Miracle and Russell have FASDs.
These stories, with name changes to protect confidentiality, are all examples of why the Specialty Diagnostic Resource Center (SDRC) was founded.
About the SDRC
Elizabeth Cleveland and David Deere Co-Direct the SDRC, which prides itself on being Arkansas’s resource for all things related to fetal alcohol spectrum disorders (FASD). SDRC conducts research on FASD and provides interdisciplinary evaluation, intensive intervention, and ongoing training for individuals and families across the state. Located on the campus of the University of Central Arkansas, the clinic is part of the Arkansas Leadership Education in Neurodevelopmental Disabilities (LEND) training program. The team is dedicated to excellence of service for families in need.
Specialty Diagnostic Resource Center
201 Donaghey Ave (24.76 mi)
Conway, AR, AR 72035
Don’t miss this upcoming training in November!
Advocating for Individuals and Families Living in Arkansas with Fetal Alcohol Spectrum Disorders (FASD)
Online: Via Zoom
Friday, November 12, 2021
Purchase tickets at https://bit.ly/FASDinAR
This all-day training will provide an overview of diagnosis, ramifications, interventions and prevention of fetal alcohol spectrum disorders (FASD).The U.S. Centers for Disease Control and Prevention reports that 2-5% ofU.S. children have FASD. To put this in perspective, FASD surpasses the prevalence of Down syndrome, cerebral palsy, or autism spectrum disorders. Estimates are that the prevalence of FASD among children in foster care approaches 70%. Since FASD is widely misdiagnosed and undiagnosed many children and adults with FASD are, likewise, never diagnosed as having secondary neurodevelopmental disabilities.
Don’t miss out on this full day of expert discussions!
We were happy to close out September & FASD Awareness Month with this guest blog from our partners at the SDRC. We hope you will join the network of organizations and advocates working to prevent prenatal alcohol exposure and support children and adults living with FASD. Check out the SDRC on social media! @ArkSDRC