Continuing the history of FAS/FASD today we highlight a few significant dates in the medical and diagnostic arena. As with my posts, every attempt is made to obtain information from reliable sources. I encourage anyone to conduct their own research, consult professionals and feel free to contact OSB with any errors or omissions.
From the University of South Dakota’s FASD Handbook (original link is no longer valid):
In 1973, Dr. C Ulleland a resident at Harborview Hospital in Seattle, Washington (USA) noted that six infants in his care with failure to thrive were born to mothers who were alcoholics.
Dr. Ulleland brought these six cases, along with others he identified, to Drs. Ken Jones and David Smith who at the time were practicing pediatric dysmorphology at Harborview Hospital. Drs. Jones and Smith recognized in these children a characteristic pattern of facial features that were unlike those of any other condition.
At this point, Dr. Ann Streissguth, a child psychologist, was asked to examine the children and found that each had some degree of developmental delay or disability. Drs. Jones, Smith, Streissguth and Ulleland published “Pattern of Malformation in Offspring of Chronic Alcoholic Mothers” in the journal Lancet. It was in this article that the term Fetal Alcohol Syndrome (FAS) was first used.
In the years since the 1973 publication of this article, it has been recognized that FAS is only one part of a spectrum of disorders related to prenatal alcohol exposure due to maternal alcohol consumption.
In 1986, the United States Institutes of Medicine, Division of Biobehavioral Sciences and Mental Disorders created a Committee to Study Fetal Alcohol Syndrome. The culmination of the Committee’s work was the publication in 1996 of Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention and Treatment.
In 2004, a group of national experts representing the Centers for Disease Control (CDC), the National Institute on Alcohol Abuse and Alcoholism (NIAAA), the Substance Abuse and Mental Health Service Administration (SAMHSA), Health Canada and professionals in the fields of research, psychiatry and justice attended a meeting facilitated by the National Organization on Fetal Alcohol Syndrome (NOFAS). At this meeting, the term Fetal Alcohol Spectrum Disorders (FASD) was coined.
As a side-note, The FASD Handbook is a great information resource. It includes:
〉 A Historical Overview of FASD,
〉 Characteristics of FASD,
〉 Diagnostic Criteria for FASD,
〉 A Discussion of Executive Skills
〉 Secondary Concerns for Individuals with an FASD,
〉 FASD Prevention Information,
〉 Strategies for Individuals with FASD at Home,
〉 Educational Strategies for Individuals with FASD, and much more.
In 2017 and 2018, the new Canadian diagnostic terms was its own infographic for Day 25 – however this year, this information is included as part of Day 52. It is my understanding Australia (and I think France) also use FASD as a diagnostic term.
Canadian diagnostic guidelines:
- Fetal alcohol spectrum disorder (FASD) is a diagnostic term describing the constellation of effects that result from prenatal alcohol exposure.
- Making a diagnosis of FASD requires a multidisciplinary team and involves a complex physical and neurodevelopmental assessment.
- Diagnosis of FASD is critical to improve outcomes for affected individuals and families, and to inform pre-pregnancy counselling to prevent future cases.
FASD is now the recommended diagnostic term:
- FASD with sentinel facial findings (i.e. short palpebral fissures, smooth philtrum and thin upper lip).
- FASD with no sentinel facial findings.
The new guidelines refer to the designation of “At risk for neurodevelopmental disorder and FASD associated with prenatal alcohol exposure.” This designation is not a diagnostic term however.
Criteria for Diagnosis, Old and New
The growth criterion has been removed from the new guidelines because it is not deemed to be specific to alcohol exposure.
The following brain domains (now 10) have been revised or added:
- Motor Skills (used to be hard and soft neurologic signs; the most controversial has been the removal of the sensory domain)
- Neuroanatomy/Neurophysiology (brain structure and functioning)
- Language (originally communication)
- Academic achievement
- Attention (originally ADHD)
- Executive function, including impulse control (and now includes hyperactivity)
- Affect regulation (includes anxiety, depression and mood dysregulation that meet DSM-V criteria)
- Adaptive behaviour, social skills, or social communication
Severe impairment, >/=2 standard deviations in formal testing in three or more domains is required by the new guidelines.
Summary of Updates, Changes and Additions:
- The use of fetal alcohol spectrum disorder (FASD) as a diagnostic term
- The inclusion of special considerations for diagnosing FASD in infants, young children and adults
- The deletion of “growth” as a diagnostic criterion
- The addition of a new “at-risk” category that will capture individuals who do not meet the diagnostic criteria but are still at risk of FASD
- The revision and refinement of brain domains evaluated in the neurodevelopmental assessment;
- “Hard and soft neurological signs including sensory motor” was renamed “motor skills” and redefined
- “Brain structure” was renamed “neuroanatomy/neurophysiology” and redefined
- “Communication” was renamed “language”
- “Attention deficit/hyperactivity” was renamed “Attention” and redefined
- “Affect regulation” was added
- “Executive function” was expanded and clarified
More information on the new Canadian Guidelines can be found in the Journal for the Canadian Medical Association.