Prenatal alcohol exposure can lead to serious birth defects and developmental disabilities and is one of the leading preventable causes of mental retardation. Since the syndrome was identified approximately 30 years ago, advances have occurred in FAS diagnosis, surveillance, prevention and intervention, but a substantial amount of work remains. (Center for Disease Control and Prevention MMWR 2002)
The term FAS was first identified in literature in 1973 by Doctors Smith and Jones at the University of Washington. There are many points when a diagnosis may be initiated; a clinician may have suspicions during early newborn visits; a parent or foster care provider may notice delays in normal development; a social service provider or an educator determines deficits in educational achievement or social skills.
Benefits of an Accurate Diagnosis
- Help prevent secondary disabilities
- Help the person receive appropriate services and entitlements such as Supplemental Security Income
- Aid communication among clinicians, caregivers, educators, and families
- Provide better self-awareness and improved understanding from family members
Importance of Early Identification
Early diagnosis and treatment for FASD can help children reach their fullest potential, lessen secondary disabilities and problems, and help families better understand and cope. These secondary disabilities include: mental health issues, disrupted school experience, trouble with the law, confinement, inappropriate sexual behavior, and alcohol and drug problems.
From 1992–1996 a long-term study was conducted at the University of Washington (Streissguth, et al) to examine outcomes among individuals with prenatal alcohol exposure. A number of factors were identified that protect individuals with an FASD from additional (secondary) disabilities, including:
- Living in stable/nurturing home at least 72% of life
- Receiving diagnosis before age 6
- No experience with violence against self
- Staying in each living situation average of more than 2.8 years
- Staying in good quality home from ages 8 - 12
- Eligible for and receiving state services
- Diagnosis of FAS versus “FAE”
- Having basic needs meet at least 13% of life
Making a good referral
As educators, case managers, physicians, judges, counselors and adoptive families, it is necessary to become more aware and more responsive to the needs of children and families affected by Fetal Alcohol Spectrum Disorders. There are key questions to consider and documentation to prepare in referring individuals for services.
- Family History of substance abuse? (Maternal Drinking, DUI’s)
- School History (Learning Disabilities, Special Education, Failure, Drop Out)
- Mental Health (Multiple Diagnoses, Failed Interventions)
- Social Profile (Foster Care, Multiple Placements)
- Legal Profile (Frequent Contact with the Law)
- Assessments (Cognitive, Behavior, Daily Living)
Diagnostic Criteria (DSM-IV-TR, 2000)
The DSM-IV-TR by American Psychiatric Association (2000) is the most widely used criteria to diagnose Fetal Alcohol Syndrome.
In preparation for obtaining a diagnosis or beginning treatment it is important to note that a multi-disciplinary team may assess, interview or examine the individual. This may result in one diagnostic session or multiple visits. Team members may include:
- Developmental Pediatrician
- Speech-Language Pathologist
- Occupational and Physical Therapist
- Neurologist and Neuropsychologist
- Social Worker and Other Behavioral Health Specialist
- Education Consultant
Tools for identifying individuals with FASD
The goal of identifying individuals with FASD is to improve the delivery of appropriate services to those individuals and their families. As the 2004 CDC Fetal Alcohol Syndrome Guidelines for Referral and Diagnosis correctly states, "Diagnosis is never an endpoint for any individual with a developmental disability and his or her family.” If diagnostic teams or physicians specializing in FASD are not available in your community, the first appointment made can be with a developmental pediatrician and/or a genetic center. The following tools are available to assist physicians with diagnostic protocols and procedures.
- Guidelines for Referral and Diagnosis of Fetal Alcohol Syndrome Centers for Disease Control and Prevention. 2004. Fetal Alcohol Syndrome: Guidelines for Referral and Diagnosis. Atlanta, GA. Department of Health and Human Services.
- Washington State FAS Diagnostic and Prevention Network developed diagnostic method, called the 4-Digit Diagnostic Code, provides accurate and reproducible diagnoses due to its use of quantitative, objective measurement scales and specific case-definitions.
- Fetal Alcohol Syndrome TUTOR, CD This comprehensive tool distributed by the March of Dimes helps health professionals screen and diagnose children with Fetal Alcohol Syndrome. The CD-ROM uses descriptive text, video clips, animations and illustrations to assist users.
Thorough assessment includes:
- Comprehensive History (Records Review & Interviews to include prenatal, birth & medical)
- Behavioral Observations (Social Skills, Attention, Impulsivity, Communication)
- Standardized Testing (Wechsler, Vineland, BSI)
- Physical Examination (Height, Weight, Head Circumference, Eye Measurements, Philtrim/ Lips)