FASD grossly under-diagnosed
Bruce Ritchie, Moderator, FASlink Fetal Alcohol Disorders Society
rates of FASD are grossly under-diagnosed and under-reported. There
are many reasons for this.
Rates and Markers
Canada, Canadian Community Health Survey 2000/01, reports
that between ages 12 to 34, 19.9% of females report having 5 or
more drinks on one occasion, twelve or more times a year. Depending
on age bracket, this number ranges from 13.8% to 26.0% who report
5 or more drinks on one occasion, twelve or more times a year. An
additional 32.2% ages 15 to 34 report using 5 or more drinks on
one occasion, 1 to 11 times a year. Five drinks will give a typical
100 lb (45 kg) female a Blood Alcohol Level of 0.25%, three times
the legal limit.
girls, including those in the above statistics, drink less than
5 drinks on each occasion but still drink frequently.
50% of pregnancies are unplanned. Most girls are 2 to 3 months pregnant
before they find out. In some cases, it is much longer. The baby
may have been swimming in alcohol at many parties before the pregnancy
was known. If she stops drinking then, she will often assume no
damage has been done.
Psychologically, it is extremely difficult for anyone to admit something
they did could have seriously harmed their child. That being the
case, what are the odds she will discuss the issue with anyone,
including her doctor?
83% of Grade 12 students drink, and 45% have had at least one episode
of binge drinking in the previous 4 weeks, according to the 2003
Ontario Student Drug Use Survey. While the percentage of
students binge drinking increases with each grade, the biggest single
increase – from 8 to 24 percent – occurs between Grades 8 and 9.
A significant number of kids are starting very young.
A 2003 survey
of British Columbia high-school students conducted
by the McCreary Centre Society found that 46 percent
of males and 43% of females in high school who admitted to drinking
had engaged in binge drinking in the previous month.
Canadian Campus Survey in 2000 found that 63% of students
reported consuming 5 or more drinks in a single sitting in the previous
is the first bowel movement by a newborn infant. Available since
at least 2001, the meconium based assay incorporates a panel of
Fatty Acid Ethyl Esters as bio-markers of maternal
alcohol use during the last 20 weeks of pregnancy. Studies with
the MecStat-EtOH assay (Avitar Technologies Inc., United States
Drug Testing Laboratories) found fetal exposure to alcohol
in 15-18% of newborns tested, approximately 4% of the newborns had
elevated results. These results compare to those included
in the CDC Behavioral Risk Factor Surveillance System
and the SAMSHA National Household Survey on Drug Abuse.
meconium test does not detect exposure in the first 4.5 months,
it would not include those mothers who drank during the first trimester
and quit when they discovered they were pregnant. Yet major damage
could have already occurred to the baby.
Given the above,
it is reasonable to estimate that at least 20% of children
have been exposed to multiple sessions of binge drinking.
In addition, there will be many who have been exposed to lower dose
drinking prenatally. Total exposure to alcohol could easily
Even low levels
of consumption, as low as 1 drink per week, are adversely related
to child behaviour. There is no known safe level of alcohol consumption
during pregnancy. “FAS represents the largest environmental cause
of behavioral teratogenesis yet discovered and, perhaps, the largest
single environmental cause that will ever be discovered.” - Riley,
E. P., and Vorhees, C. V. (1986). Handbook of Behavioral Teratology.
Plenum Press, New York, NY.
Paediatric Society states: “Fetal alcohol syndrome (FAS) is a common
yet under-recognized condition resulting from maternal consumption
of alcohol during pregnancy. While preventable, FAS is also disabling.”
“Health care providers play an important role in identifying babies
or children with FAS. They should become familiar with the screening
tools that are available to diagnose the condition in children at
various ages.” “FAS diagnostic and treatment services require a
multidisciplinary approach, involving physicians, psychologists,
early childhood educators, teachers, social service professionals,
family therapists, nurses and community support circles.”
school boards in Canada, the Lambton Kent District School Board
(urban / rural mix) with 28,000 Elementary and Secondary School
students has 6,000 students (21.4%) receiving services from
the Special Education Department. While not all the individuals
with disabilities are identified as the disabilities having been
caused by prenatal exposure to alcohol, the vast majority of the
disabilities are of types known to be caused by prenatal alcohol
students with FASD are misdiagnosed with ADHD (Attention Deficit
Hyperactivity Disorder), ADD (Attention Deficit Disorder), ODD (Oppositional
Defiant Disorder), RAD (Reactive Attachment Disorder), ASD (Autism
Spectrum Disorder), etc. These “symptoms” do not come with the social
baggage of an alcohol associated disability. Unfortunately, it also
means the children and the family don’t get the proper intervention
and later children born into the family will likely have more serious
disabilities. Alcoholism is a progressive disease. Many other schools
in other areas have far higher rates of “identification”. Some other
school districts discourage “identification” because they would
have to provide services with little funding backup.
Canadian Centre for Children’s Research under the direction
of Dr. Dan Offord, stated that 20% of Canadian children have a serious
mental health problem.
World Health Organization’s “WHO Global Status Report on
Alcohol 2004 - Health effects and global burden of disease” states,
“Alcohol use is related to wide range of physical, mental and social
harms. Most health professionals agree that alcohol affects practically
every organ in the human body. Alcohol consumption was linked to
more than 60 disease conditions. In the developed countries, 9.2%
of the entire disease burden is attributable to alcohol, only exceeded
slightly by the burden attributable to tobacco and high blood pressure.”
Denial among governments
of death and disability caused by alcohol globally is similar to
that caused by tobacco and high blood pressure”, concludes a review
in The Lancet (Vol. 365 No. 9458, Feb. 5, 2005). The study states,
“A stark discrepancy exists between research findings about the
effectiveness of alcohol control measures and the policy options
considered by most governments. In many places, the interests of
the alcohol industry have effectively exercised a veto over policies,
making sure that the main emphasis is on ineffective strategies
such as education.”
The beverage alcohol industry has a very powerful advertising program,
showing alcohol as a healthy part of the lifestyle of youth. Attacking
such fun and games would paint one as a “spoil sport”, anal retentive
and otherwise general poop. Truth in advertising would show, in
Robin William’s words, “It’s 3 A.M. and you have just pissed on
a dumpster. It’s Miller Time”. Or they would show children with
The beverage alcohol industry has the same level of morality as
the tobacco industry. Any attempt to control them is met with well
financed attacks. They finance tainted research to promote the benefits
of their product or suppress negative results. They finance organizations
purporting to deal with the results of alcohol. If anyone goes against
the party line, they kill the funding. Some politicians receive
significant financial support from booze related sources. It costs
money to get elected. Who says you can’t buy votes?
In February 2005, Sandy’s Law came into effect in Ontario.
This requires any business that sells beverage alcohol to display
posters warning against drinking while pregnant. Yet those posters
are absent in many restaurants and bars and LLBO inspectors have
to be prodded by activists to enforce the law or they have to provide
copies of the mandatory posters.
If the true
extent of prenatal alcohol related damage were “known”, the cost
required to address the issues would be massive. In some cases,
the true extent of FASD, if recognized, would bring “shame” to the
village and is officially minimized or ignored. In many cases, the
leaders themselves are alcohol affected, an added incentive for
denial. In any case, governments are themselves addicted to alcohol
tax revenue. They see booze and gambling as the geese that lay the
golden eggs, as long as they can ignore the social and financial
fallout. It must be recognized that many legislators and bureaucrats
use and abuse alcohol too.
Justice spending exceeds $11 billion annually. When I administered
a police services computer system, including Occurrence Records,
more than 80% of police calls involved alcohol or other drugs. If
only half the Justice budget were attributable to alcohol, then
the cost would be $5.5 billion per year. Federal Health Transfers
to the provinces are about $20 billion annually. The Provinces claim
that amount is less than 20% of the actual health cares costs, the
balance coming from individual premiums and taxes, for a total of
$100 billion annually for Health Care. If 9.2%
of the total health burden is because of alcohol, that would add
another $9.2 billion to the annual cost of alcohol. Alcohol
taxes generate $3.2 billion per year - an $11.5 billion shortfall
in the Justice and Health budgets alone, $350 for every
man, woman and child in the country, whether they drink or not.
Add to this the alcohol related costs to individuals, families,
education, social services and businesses and it become obvious
that the beverage alcohol industry only pays a tiny fraction of
the cost of the fallout from their products. The beverage alcohol
industry has a large vested interest in minimizing the public perception
of the real effects of their products. Why are governments so addicted
to alcohol? Perhaps they don’t understand mathematics?
have provided only token funding to deal with FASD. In Canada, the
federal government announced $11 million (Canadian funds) ($3 Cdn
= $2 US) for FASD over 3 years. Virtually none of it has made it
to the grassroots where the battles are being fought. Government
funding of redundant research projects rather than sustainable action
initiatives postpones the necessity of dealing with the elephant
in the living room.
to the Ontario Physician Human Resources Data Centre, as at September
2005, there were 21,793 physicians in Ontario, including:
• Family Physicians/General Practitioners = 9,842
• OBGYN’s = 640
• Paediatricians = 936
• General Paediatrics = 750
• Medical Genetics = 24
How many physicians
have received training to screen for alcohol consumption among their
patients? How many physicians regularly screen for alcohol use in
do not receive training in FASD diagnosis at medical school, with
very few exceptions. General Practitioners and Family Physicians
are the primary line of defence in preventive medicine and diagnostic
screening, yet they are not trained or equipped to identify alcohol
use in their patients or diagnose prenatal alcohol exposure.
How many physicians
can actually diagnose Fetal Alcohol Spectrum Disorders as FASD,
not just a subset of clinical symptoms such as ADHD, ADD, RAD, ODD,
etc.? How many physicians have ever attended an FASD conference
or seminar? This lack of physician training is obvious from the
difficulties we have in referring people to doctors for FASD diagnosis.
physicians are not trained to diagnose FASD they will attach other
labels to symptoms. Often the prescribed treatment will
be inappropriate and the prognosis will be poor. Further, the availability
of financial and educational supports for the child will be compromised.
If FASD is undiagnosed it is not part of the statistics.
resist a FASD diagnosis because they believe it would label
and stigmatize the child and the family. As there is no
“cure”, what’s the point of a diagnosis? If FASD is undiagnosed
it is not part of the statistics. The answer is that lack
of the proper diagnosis will have serious medical, educational,
social and legal consequences for the child, the family and for
do not screen their patients for alcohol use and avoid broaching
that issue with patients of child-bearing age.
a. They are often uncomfortable with the issue themselves.
b. They don’t want to offend the patient by asking questions about
a legal substance, alcohol.
c. They received very little training on the entire subject of alcohol
in medical school.
d. Physicians should be routinely using urine alcohol test strips
to screen for alcohol use just as they use N-Multistix for glucose,
pH, keytone, protein, etc. in urine samples. Yet they are often
resistant to the concept. Many even avoid asking non-threatening
questions about alcohol use during regular physicals.
(about the same as the general population) also have substance abuse
problems. Doctors who treat their own problems chemically will also
tend to treat their patients problems chemically.
doctors prescribed “alcohol drips” to delay the
onset of labour. This usually happened in the third trimester. A
current study reports that a single exposure to high levels of ethanol
(the alcohol in beer, wine and spirits) can kill nerve cells in
the developing brain. This exposure causes brain cells to commit
suicide by a process called apoptosis or programmed cell
death. Infants and young children are also exposed postnatally
to alcohol in colic and cold medicines as well as the breast milk
of mothers who continue to drink. Many are exposed to “a wee drop”
of spirits in warm milk to settle them down for the night. This
virtually main-lines the alcohol into their immature system.
any condition, doctors generally deal with the more extreme (obvious)
cases and with FASD it is the extreme end of the spectrum
that is most likely to be diagnosed, if at all. Yet research has
not found a safe level of alcohol exposure during pregnancy and
we have seen that the damage is a continuum, rather than a threshold
condition. So likely most affected children are dealing with reduced
skills, fine and gross motor co-ordination, talents, IQ, AQ (adaptive
capacity), and have more mental health, physical and learning issues
than necessary. Most damage is undiagnosed, but not unpunished.
If it is undiagnosed it is not part of the statistics.
Divide a condition
into enough small sub-diagnoses and the condition magically disappears
from statistical relevance. Fetal Alcohol Syndrome is a sub-category
of Fetal Alcohol Spectrum Disorders with specific diagnostic criteria.
It is not necessarily more disabling than Fetal Alcohol Effects,
or Alcohol Related Birth Defects, or Alcohol Related Neurological
Disabilities, or pFAS, or Static Encephalopathy, etc. ADD, ADHD,
RAD, ODD, PDD and CAPD are other favourite diagnoses. Some
of the sub-diagnoses have more serious medical (physical and mental
health) implications and others have more serious educational, social
and legal consequences. All are directly caused by prenatal
alcohol exposure and affect the health of the mother and the child,
and indeed the entire family. The GP/Family Physician is
still the critical primary line of defence and diagnosis but is
generally untrained, ill-equipped and disinclined to do so.
Denial is a hallmark of alcohol addiction. So those who
are addicted to alcohol will not recognize they have a problem and
may not stop drinking. Addiction by definition is the removal of
voluntary control. Drinkers will verbally minimize the quantity
they drank and will resist future diagnoses that might implicate
them as the source of their child’s problems. Fatty Acid Ethyl Ester
meconium studies confirm that pregnant drinkers lie about their
With some exceptions, couples tend to have similar drinking habits
and they tend to socialize with others with similar lifestyles.
Sudden abstinence during pregnancy requires the support
of the father, families and friends. Yet the pregnant mother
is often placed in social situations where she is encouraged to
“have just one drink. It won’t hurt you or the baby”. The social
pressure to deny alcohol has affected the child is great.
alcohol is legal and is advertised as part of a youthful, sophisticated
lifestyle, social condemnation of alcohol abuse leads families to
conceal the problems. At the higher end of the income scale, it
is easier to hide the problem than it is among those in regular
contact with social services and health care agencies. Families
become enablers and the problem drinking progresses. Again,
social baggage attached to the word “alcohol” results
in concealment of problems in the children. The concealment leads
to failure to properly treat the child and results in development
of secondary disabilities. Primary disabilities are those
the child is born with and secondary disabilities are those that
develop as a result of the failure to diagnose and treat the primary
disabilities when the child is young.
”The girls get knocked up and the boys get locked up.”
They are followers, easily misled, with little or no appreciation
of consequences. Without intervention, many ride the justice system
merry-go-round or become “homeless street people”. They are required
to compete in society but have been denied the tools to do so. Brain
injury cannot be cured with punishment.
Of FAE individuals between the ages of 12 and 51:
• 95% will have mental health problems;
• 60% will have “disrupted school experience”;
• 60% will experience trouble with the law;
• 55% will be confined in prison, drug or alcohol treatment centre
or mental institution;
• 52% will exhibit inappropriate sexual behaviour.
Of FAE individuals between 21 and 51:
• more than 50% of males and 70% of females will have alcohol and
• 82% will not be able to live independently;
• 70% will have problems with employment
children with FASD are born to multi-generational drinkers. Children
with FASD are having babies with FASD. Inability to predict
consequences, impulsivity, high potential for alcohol addiction
and a hormone driven twitch in the kilt are a dangerous combination.
These individuals are less likely to get proper prenatal care, admit
to alcohol consumption (let alone accurately admit the quantity
and frequency), or maintain proper nutrition during pregnancy. Many
of these babies with FASD will never be diagnosed but will continue
indicate that more than half the prison population was likely exposed
to high levels of alcohol prenatally and should be formally diagnosed.
Half were under the influence of alcohol and/or other drugs when
they committed the crime for which they were incarcerated.
is estimated that perhaps 80% of children in protection by Children’s
Aid Societies, DFS, etc. have FASD. However, diagnosis
is often withheld so that FASD does not have to be disclosed in
adoption proceedings. If they get a diagnosis, they have to disclose
or face lawsuits. If they do disclose, it could reduce the number
of potential adoptive parents for that child. If they don’t get
a diagnosis, they don’t have to disclose and the child could be
easier to adopt out, and the agency may avoid paying adoption subsidies.
Unfortunately, it also means the proper interventions are not done
and the child and family deal with years of frustration, heartache
and personal and financial disaster. Foster parents have been threatened
with dismissal if they take a ward in for FASD diagnosis. In my
opinion, failure to diagnose borders on criminal negligence.
Fifty years ago, the vast majority of children
placed for adoption came from healthy young teens that “got into
trouble” and became pregnant. The social stigma of being an unwed
mother and the lack of financial supports were serious problems.
Today the social stigma has virtually disappeared and many babies
born to unwed young mothers are raised by their mother and the grandparents
in the family home. The availability of proactive and retroactive
birth control has also made a difference.
Today, a very large percentage of children in care
have been removed from abusive homes, usually involving alcohol
and other drugs. Most of these children have been prenatally exposed
to high levels of alcohol and will pay the price for a lifetime.
Often, these are children who are difficult to place and who grow
up bouncing through many, many foster homes. They started with serious
primary disabilities and become adults with a bunch of secondary
disabilities added on.
children in foster care are denied adoption because although their
birth parents / birth family may not be able to care for them, the
biological families do not want to permanently lose contact with
them and the possibility of playing some role in their lives. Consequently,
they refuse to waive their parental rights and the children remain
data collecting systems have not been established and properly
financed to identify the extent of the problem. Meconium testing
should be mandatory for every birth in Canada. It is the only way
to objectively screen for the need for early intervention and diagnosis.
There is no question that early diagnosis and intensive intervention
do radically improve the prognosis for the child, and the family.
And it is far less costly than dealing with the secondary disabilities.
the baby has passed fully from the mother’s body, it is legally
a human being with full rights to the protection of the state
under the Canadian Charter of Rights as well as child protection
legislation. Yet there is some debate about the right of the hospital
to test the meconium (baby poop), a waste product, without the mother’s
consent. The rights of the child to full and proper health care
should take precedence over a parent’s ego.
to be trained, equipped and required to screen all their patients
for alcohol and other drug use. They are responsible for their patients’
health and cannot competently do the job without the proper information.
All of the
above, and more, work together to grossly under-report and under-estimate
the incidence of damage caused by pre-natal exposure to alcohol.
Prevention initiatives are critical to the survival of universal
public health care. To deal with the problems, they have to be diagnosed.
really is in the living room and “Denial” is not just a river in