If it 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 diagnostic criteria.

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 for FASD.

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 Rates

Statistics Canada’s 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 levels.

Racial Bias

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 issue. Wrong!

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.

“• neurologic hard or soft signs (as age appropriate) such as impaired fine motor skills, neurosensory hearing loss, poor tandem gait, poor eye–hand coordination

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.”

Without information 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.

Conclusions

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 Records.

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.

Bruce Ritchie
Moderator, CEO
FASlink Fetal Alcohol Disorders Society

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