quacks like a duck ...
If it looks, quacks,
swims, flies and walks like a duck, the odds are that it’s
a duck. The same applies to FASD. FASD is grossly under-diagnosed.
Public Health Agency
of Canada FASD Statistics
In the literature, the
Public Health Agency of Canada cites 5 studies purporting to justify
its claim that the incidence of FASD in Canada is 1% of the population.
The studies are 11, 16, 21, 23 and 26 years old and were done prior
to the adoption of the current diagnostic criteria for FASD. They
were all done in small, remote, First Nations communities and none
were of non-native communities. In each case the study statistics
should only be applied to that specific community.
Even then, given the
age of the data and lack of sophisticated diagnostic tools (such
as MRI and meconium FAEE analysis) at that time in those locations,
and under-reporting due to social stigma attached to alcohol use
and abuse (village shame), the data likely do not provide an accurate
picture. Serious learning and behavioural difficulties often do
not manifest until a child is in school. By this time the possibility
of prenatal alcohol impact might not be considered.
Given the lack of knowledge
surrounding FASD at the time of most of the studies, (11,16, 21,
23 and 26 years ago) it would be almost inconceivable that individuals
with the more subtle manifestations would have been detected. Only
extreme cases would be diagnosed. Often the neurological damage
goes undiagnosed, but not unpunished.
In referring to those
specific studies, “However, none of these data should
be generalized to other communities, other populations or the Canadian
population in general.” Canadian Medical Association
Journal - CMAJ • March 1, 2005; 172 (5_suppl). doi:10.1503/cmaj.1040302.
Fetal alcohol spectrum disorder: Canadian guidelines for diagnosis
- Albert E. Chudley, Julianne Conry, Jocelynn L. Cook, Christine
Loock, Ted Rosales and Nicole LeBlanc
The Canadian Paediatric
Society states in their FASD policy position, "Fetal alcohol
syndrome is a common yet under-recognized condition resulting from
maternal consumption of alcohol during pregnancy."
The data from the old
First Nations studies used by the Public Health Agency of Canada
certainly should not be applied to 33 million non-native Canadians,
particularly as no study has been done of the “White”
population. This is the fatal flaw in PHAC’s statistics.
Impediments to Diagnosis
There is no way to effectively
implement a national mandatory surveillance and reporting system
for FASD. Physicians simply will not use it. There are many impediments
to diagnosis, not the least being that very few physicians have
been trained to screen and diagnose FASD. Even today, few medical
schools provide FASD diagnostic training to undergraduate physicians.
The Canadian FASD diagnostic criteria and practice also tend to
require extensive psychological testing, often reaching $2,500 per
child, testing that must be paid for by the family. This in itself
causes economic selection and data bias.
The Canadian Medical
Protective Association, the insurer for all practising physicians
in Canada, has instructed physicians to not make an alcohol related
diagnosis in a child unless the mother has admitted to using alcohol
during the pregnancy. Else she could sue the physician for libel
and CMPA would have to pay the legal fees and judgment.
Physicians do not ordinarily
screen their patients for alcohol use. It is a legal substance and
many are concerned about offending their patients. Rather than incurring
the wrath of patients or the CMPA, it is much easier to call the
child’s diagnosis autism, ADHD, bi-polar, RAD, etc. These
don’t carry the social baggage of an alcohol related disability.
Unfortunately, it can also mean the intervention and treatment protocols
may not be appropriate for the child and no intervention is taken
to prevent further alcohol exposed pregnancies by that mother. This
is where economic insurance considerations try to dictate medical
Social stigma of alcohol
problems within a family and particularly the guilt feelings of
having done something that permanently injured your child, are strong
incentives to denial. Within some communities, alcohol issues can
be seen as “village shame” and both opportunities for
diagnosis and services for treatment and intervention are denied.
This “massive denial” can prevent a child being screened
As the traditional statistics
and epidemiology methods are fatally flawed in this case, it becomes
necessary to find other markers that might be instructive as to
the incidence of FASD.
Balance of Probabilities
FASD diagnosis is always
based on a “balance of probabilities”. There is no blood
test and no genetic marker that alone can prove conclusively that
a particular individual has FASD. Instead, diagnosis is based on
the combination of knowledge (absolute or probable) of the mother’s
drinking behaviour, the child’s behaviour patterns and possibly,
in some cases, external or internal dysmorphology in the child.
As facial features are
formed during a very narrow time span around the third week of pregnancy,
if the mother was not drinking at that time it is likely the child
would have relatively “normal” facial features but could
still be as severely neurologically damaged as one whose mother
did drink during that time period. The perception that children
with the facial dysmorphology are more severely disabled than those
without, is extremely misleading and factually wrong. In reality,
it is those with invisible disabilities who are most severely compromised
and who develop secondary disabilities.
There are more
than 60 medical conditions known to be caused by, but not
necessarily exclusively by, prenatal exposure to alcohol. Ethanol
interacts with over 1000 genes and cell events, including cell signalling,
transport and proliferation. Alcohol is a known mutagen.
Prenatal Alcohol Exposure
Canadian Community Health Survey includes a section on drinking
behaviour. They state there is a 95% confidence level in its applicability
to the Canadian population. While use of their statistics cannot
conclusively identify an individual person as drinking alcohol at
a certain rate, in the absence of other information it can identify
a probability that an individual has been drinking at a given rate.
By using the drinking statistics of females during the fertility
years, birth statistics and population statistics, it is possible
to identify a probability of exposure to alcohol. On this basis,
barring other information being available on a specific individual,
there is a 79% probability that a child has been prenatally exposed
to alcohol. Further, there is a 37% probability of that child having
been exposed to binge drinking of 5+ drinks per occasion, multiple
times. In many cases, the exposure would have been in the two or
three months before the woman confirmed she was pregnant. However,
Meconium FAEE studies show 15% to 18% of pregnant women continue
to drink during the final 20 weeks of pregnancy, 4% at elevated
According to Indian
and Northern Affairs Canada and Statistics Canada there are 720,000
registered Indians in Canada. The total Canadian population (all
cultures) is about 33,000,000. Registered Indians are only 2.2%
of the population. Yet 79% of Canada's babies are prenatally exposed
to alcohol, 37% to binge drinking of 5 or more drinks per occasion,
multiple times. It is the non-native community that is doing most
of the drinking. Biases and bigotry die hard, as does learned helplessness.
The attitude in government and promoted by the media, is that natives
have a huge drinking problem and FASD is primarily a First Nations
Special Education as
an incidence marker
In Canada, children
are required to attend school until age 16 to 18, depending on province.
They are tested in a wide variety of ways and records of those tests
are kept throughout their school career. It has long been recognized
that some students have exceptional difficulties in their behaviour
and/or learning performance that place their education at severe
risk. The Ministries of Education have developed stringent criteria
for those students most severely affected to be able to be “identified”
and provided with Special Education.
The Canadian diagnostic
criteria for FASD include probability of prenatal alcohol exposure
and degraded behaviour and performance.
hard or soft signs (as age appropriate) such as impaired fine
motor skills, neurosensory hearing loss, poor tandem gait, poor
E. Evidence of a complex
pattern of behaviour or cognitive abnormalities that are inconsistent
with developmental level and cannot be explained by familial background
or environment alone: e.g., learning difficulties; deficits in
school performance; poor impulse control; problems in social perception;
deficits in higher level receptive and expressive language; poor
capacity for abstraction or metacognition; specific deficits in
mathematical skills; or problems in memory, attention or judgment.”
to the contrary in a specific case, there is a 79% probability of
prenatal alcohol exposure and a 37% probability of binge drinking
exposure. If the behavioural and/or performance markers are there
too, there is a high probability that they are due to alcohol exposure.
Balance of probabilities.
Of the 28,000 students
in the Lambton Kent District School Board, 6,000 (21.4%) are receiving
Special Education Services. The causes have to be either environmental
or genetic, or a combination of both. As alcohol is a known mutagen
and teratogen, we cannot discount all the possible genetic causes.
We do know that alcohol is the most pervasive environmental toxin
to which children are exposed in utero.
Prenatal alcohol damage
is a diverse continuum from mild intellectual and behavioural issues
to profound disabilities or premature death. Prenatal alcohol damage
varies due to volume ingested, timing during pregnancy, peak blood
alcohol levels, genetics and environmental factors.
If we remove from the
Special Education rolls, those students whose presence there is
clearly unrelated to prenatal exposure to alcohol, we are left with
the vast majority who are there for conditions of types known to
be caused by prenatal alcohol exposure. As there is a 79% probability
of prenatal alcohol exposure in a child, the onus is on proving
there was no alcohol exposure and/or alcohol did not cause the presenting
problems in that child. Balance of probabilities.
It is probable that
between 10% and 15% of students are receiving Special Education
because of prenatal exposure to alcohol. More precise information
could likely be gained by detailed studies of the Ontario School
Given that the statistics
used by the Public Health Agency of Canada have been obviously inappropriately
used and are dangerously misleading, my conclusions are more likely
to be valid in the Canadian context.
Sources of my conclusions
My conclusions are based
on Statistics Canada data (drinking, birth, and population), existing
medical research literature, Ontario Ministry of Education Special
Education Exceptionalities criteria, Special Education statistics
(Lambton Kent District School Board - 28,000 students) and the Canadian
FASD Diagnostic criteria.
My conclusions are influenced
by attendances at numerous FASD related conferences and hundreds
of meetings with those active in the FASD field, as well as having
compiled more than 130,000 FASD related documents in the FASlink
Archives. I publish the FASlink CD, a compilation of more than 212
MB of FASD related information. I publish the FASlink website, the
highest rated Internet location for credible FASD information. It
serves more than 400,000 people annually and is a major source for
FASD related books, journal articles and theses. I have lived and
worked intimately with FASD issues for 20+ years and am the recipient
of the Toronto St. Michael’s Hospital “Award for Pioneer
Work in the Area of Fetal Alcohol Spectrum Disorders”.
In 2007, I travelled
for 4 months and 22,000 km on the Great FASD Horseback Ride Across
Canada to raise awareness of Fetal Alcohol Spectrum Disorders. It
was the first Canadian national public awareness campaign for FASD.
I lived on and off First Nations reserves, in treatment centres,
with FASD families, under canvas and in comfortable accommodations,
participated in dozens of FASD events, shared in hundreds of teaching
and learning moments and talked with hundreds whose lives have been
dramatically affected by prenatal alcohol exposure. During the trek,
I was presented with two Eagle Feathers. To be given an eagle feather
is the highest honour that is presented within the First Nations.
Similarly, the Métis Nation presented their Honour Sash.
Everyone has personal
experience and biases that they bring to any authored work. In some
cases, the bias can be influenced by the project funding sources.
It is always critical to know the sources of the funding for any
research project. A researcher does not bite the hand that feeds.
It is for that reason that FASlink does not accept any funding from
the beverage alcohol industry.
My personal bias, and
we all have them, comes from having a child with Fetal Alcohol Syndrome
and having lost my wife to alcohol. It cost her life and cost society
a brilliant family physician. This is what began and encourages
my 20+ year involvement with FASD issues.
FASlink Fetal Alcohol Disorders Society