FASlink Fetal Alcohol Disorders Society
FASD grossly under-diagnosed and under-reported
Bruce Ritchie, Moderator, FASlink Fetal Alcohol Disorders Society

The current rates of FASD are grossly under-diagnosed and under-reported. There are many reasons for this.

Exposure Rates and Markers

Statistics 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.

Many girls, including those in the above statistics, drink less than 5 drinks on each occasion but still drink frequently.

About 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?

In Ontario, 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.

The Canadian Campus Survey in 2000 found that 63% of students reported consuming 5 or more drinks in a single sitting in the previous year.

Meconium 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.

As the 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 exceed 40%.

Results of Exposure

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.

The Canadian 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.”

Typical of 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 exposure.

Most 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.

The 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.

The 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.”

Massive Denial among governments

”The amount 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 full FAS.

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.

Canada’s 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?

Governments 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.

The Physician’s Role

According 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 their practice?

Physicians 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.

If 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.

Some physicians 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 society.

Doctors generally 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.

Some physicians (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.

For years, 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.

With 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.

Families and Fallout

Massive 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 alcohol use.

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.

Although beverage 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.

Secondary Disabilities

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 drug problems;
• 82% will not be able to live independently;
• 70% will have problems with employment

Many 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 the cycle.

Studies 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.

It 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.

Thousands of 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 in limbo.

Independent, 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.

Once 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.

Doctors need 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.

The elephant really is in the living room and “Denial” is not just a river in Egypt.